Fleas and Lice

Posted on March 5, 2014 by admin

My goodness. I just cannot believe how long this took to hear anything.

Biopsy was 2 weeks ago. Total disaster. I was in LOTS of pain and awful nausea. Scheduling nurse and I had talked 3 different times about taking my MJ vapors, so I wouldn’t vomit. She said she would make a note of it. Next time, when I brought it up because I remembered the ‘circus’ when having a CT scan.

Once there, however and barely registered, I was taken to the Financial Office to ‘see if they can help me.’ Well, NOT on that day! Just before a procedure.

Again, this ‘nurse’ came up to me as I was waiting on the Gurney to admonish me about ‘smoking’. GOSH! NOT again. I just moaned, cried and rocked with pain. I ‘think’ they finally gave me something for nausea. Speaking of nausea: This last bout of ‘bowel problems’ has been responsible for me losing 35 lbs in 5 weeks. This had me so very worried and concerned. I finally put the symptoms in search engine and there was a NEW word. (New for me.) ‘CACHEXIA’. This is the terrible ‘wasting disease’ caused by cancer. Cancer cells feed and suck the protein out of the healthy cells. NO MATTER HOW MUCH YOU WOULD EAT, even if you could, it would not matter. You starve to death. Being so passionate about food and a decent cook, I thought this would be the most cruel end. Many a night I cried with terror of this death and no one told me different. This was an older dated research and I’ve not had time to find more. BUT, other than some Opiates which they say may or may not be effective, what I did see was that this ONE medication for this ‘condition’ has shown good promises: “CANNABIS”. At that time (2006) it was only legal in Europe. Well, was I happy to see that. I’m already on my way. Then, after a break through 2 weeks ago, when I finally had some peace and less pain with bowels. Three days ago, I strted eating ‘NORMAL’ (organic) food. Just small plate but ‘plate’ never the less. My weight had spiraled down to 155 lbs. I’ve gained 5lbs since. I cannot convey the PURE JOY of feeling ‘Hunger’. I’ve also learned, that I have to have 3 different forms of MJ.

First: ‘Tears of Phoenix’ cannabis oil for cancer. One grain of rice-size about 5 times a day. Ingested with applesauce, 1 mini, tiny piece of ‘European butter’ (fat content is higher.) I found the perfect way to get it down without ‘gagging’. I cut off a slice of lemon, suck on it, throw down the ‘cannabis’ and suck on lemon again. THAT way, no taste of MJ.

I’ve also learned, that when you are so very sick, you cannot eat from a plate or ‘chunky food.’ I was still drinking this powerful bone-meat-veggie-broth. In the middle of the painful night, to soothe my poor abdomen, I would get my beanie bag heated and then 1/2 cup of thus HOT broth.

When Cameron was here and we sat down to eat and I couldn’t, he looked at me with such naked fear and tears brimming, that it broke my heart that I can’t do better. But then, if it had been this disease, nothing matters. I took a photo of my ‘first food’ and posted it on FB. 🙂

Meanwhile, I have also had an appointmenbt with my ‘regular’ doc whom I beseeched to help me get better with the ‘other stuff’. Also asked him, if he would ‘monitor’ me and note changes and improvements.

I guess, we are still doing the CA 125 even though the Diagnosis is in question. When I learned, that even though the Liver has lesions, it is not cancerous. Once I had shared this, I received many ‘congratulatory’ mails and phone calls.

This does NOT mean, I don’t have cancer anymore but only that not now, on the liver. Everythinbg else was still there, last CT scan. The one with the MOST worrying feature, is the tumor on the aorta. No help for that. This is why the Cannabis has to work because THAT could be my death sentence.

I had asked a friend from the medical field to look at a few things. He graciously did so. Since I don’t have a ‘workable’ diagnosis, I asked what it could be? He answered:’ Lice and Fleas!’

WHAT!? “Some people have a definite cancer (lice) and some people have a definite cancer ( fleas) and some people have LICE AND FLEAS!” Best medical explanation I ever had. Thanks.

Had to get another batch of cannabis. This one seems to be much improved and so am I. When you consider, that ALL I am taking for the remaining bowel problem, is ONLY 1/2 of an Ibuprofen and ‘maybe’ 1/4 of a Tramadol, then be assured that’s my entire PHARMA. Less and less pharma pills.

Still envisioning going to Germany and Austria. I guess I will know more after next week’s test.

At the hospitas, later, I vomited all over the place. Horrible experience. I made some decisions. I will have all my tests done here, at home. That will reduce the ‘Misery time’ of about 3-4 hours or more. I live only a few blocks from our Hospital. (They are NOT as rude, either.)

I am supposed to have another Biopsy. (Will call my surgeon and ask if he does this as well.) Not sure if I shoud have before or After the trip. (I will interject that if the ONLY option they will offer me is chemo, I probably won’t take it. My bowels and blood clots would not withstand a new toxic assault.

The other day, I felt soo good, I put some ‘Strauss’ on and I cleaned my fridge, kitchen, changed guestroom, made Pear Strudel, cleaned my bathroom and THEN….. then I danced a waltz. Alone in my kitchen, the pale sun shinig in and tears running down my face for the JOY of just doing this simple, little thing.

“Chemo never felt this good.’ Cannabis can do a lot but it cannot sew. Healing (sewing) damage. Researching new concepts and treatments.

Lost a few ‘friends’. One, because I take Marijuana. (Gateway to Hell) hahaha. The other one, because I won’t play the Political-Hate game. I JUST do NOT care right now. I am trying to save my life and ignorant opinions do not interest me.

Sure wish I could see my grandkids. It’s been over 2 years with Kaleb and 3 years for Brianna. (Dylan is working, still and busy in the high country.)

24 Hours in the life of….

Aside

As days passed in a haze of pain and misery, not knowing why I was hurting so bad.. and why the Vapors were not working. Coupled with such debilitating nausea and loss of appetite that I rapidly lost 22 lbs before one month was out. I was trying desperately to slow, halt this slide toward starvation…As a total Foodie and passionate cook, not being able to cook/eat was so sad. Cameron came to help out and take me to the store. It had been days since I’d been out. But only a few minutes in the Grocery store I had to leave very nauseous. Sight and smell of food was ‘disgusting’ to me. I asked to hurry home.

Weak and sick, so sick. So much in pain. PLEASE-DEAR-GOD-MAKE-IT-STOP-PLEASE-PLEASE-PLEASE…..crying and snot running down the same time. That’s all I have against the pain. If I take morphine, constipation so severe, same pain.

I had been off the cannabis for 3 days and decided to restart with the original ‘rice size’. I swear, that only 3+ hours later , pain subsided and I could ‘go’. But, at night, still between the hours of 1-4 A.M I was in Painhell!! I noticed, that this pain was like a ‘rollercoaster’ peaks and valleys. I thought: this is NOT the cancer, this is the COLON trying to PUSH and if it is blocked, then the matter pushes against your stomach, which immediately makes you sicker than a dog! Being nauseous from NOT eating is different. Learn to listen to your body. The cycle continues IF there’s no relief. In the pain category,

I would judge this way: 1. Kidney stones, 2.Bowel obstruction, 3. Childbirth. (I’ve had all 3.) Bowel and Birth pain is about the same with ONE HUGE difference: After labor pains you get a lovely, little baby and then it’s over. With bowel obstruction, all you may end up with is a bag that doesn’t match anything you have.

As lay helplessly weeping and hiccupping, Cameron came to sit with me, talk and hug me.

Then I learned these small but oh so important improvements.

First: I manage the pain throughout with smaller portion but more times. Right now, I take this times 4, so it covers me DURING the spasm time. Then, I take some ‘vapors’ against the NAUSEA. I’ve cooked a strong beef-bone stock and this is what I divided into 2 batches. I take 1/2 cup of hot stock and the warmth that I feel going down, is priceless. The instant relief one gets is miraculous. So. Now I could start to eat. (Cameron did not inherit any cooking genes.) When I woke in the morning without ANY pain nor NAUSEA, I sank to my knees, just overwhelmed with blessed, heavenly relief.

BRAEKFAST: 1/2 cup stock. 1/8th Melon, a few vapor puffs, wait 10 min then 1/2 sandwich. ( A few vapor puffs, wait, then LUNCH: 1/8 of Melon, 1/2 bowl of Spaghetti with only a little garlic taste and butter, plus 1 German Hamburger. Later: Tea with 1/2 slice bread.

DINNER: Left over Spaghetti, same way with 1 more hamburger.

I have learned to PUREE my food so it will NOT become a harsh mass. BE kind to your colon and learn to eat ‘different’. Your brain only knows ‘what was’. That’s why we want to ‘sit down with the family and eat a nice dinner.’ Well, of course you can sit down with them BUT you cannot EAT like them. We now have a new way of eating. Small portions, pureed so I can have (organic) meat-protein as I’m not allowed much Vitamin K. (Blood clots from chemo). When my friend Silke took me to CT scan and then out to Lunch, I’d asked to have this great soup ‘pureed’ and they are more than glad to do this.

To fight cancer successfully, you should really RESEARCH well. Go to: www.phoenixtears.ca learn how to make it. http://phoenixtears.ca/videolibrary THIS IS NOT IN A DISPENSARY. You have to find someone to make it. IF it is NOT high in THC content and it’s not been decarboxylated FULLY— then it is NOT Rick Simpson’s oil (RSO). Suggested is 95-98% of INDICA strain .( SATIVA is what is used more for brain matters such as Epilepsy, Alzheimers.)

The latest link is from a Swiss clinic, which reports marvelous successes. When you click on link, there are little Flags which depict language uses.

http://www.qcmaf.eu/our-swiss-clinic-opens-on-the-28th-october

Friends have asked, how much do you take? Well, it is different for everybody. That’s why you start so small. But, rule of thumb: If you ‘poop’ like an elephant, it’s too much, if it’s like a Hummingbird, not enough. (That’s one of the ‘side effects. Great, huh? FOR US it is. I have managed to get it nearly right after 3 mos of hit and miss.

Still waiting on CT scan results. SOO many desperate phone calls and messages. SOOO many people in PAIN. SOOO many ignorant people. Be at least open minded. Research. You may just save your or your child’s life. There has been an Exodus to Colorado by parents who bring their very sick children to have this PLANT medicine. NO one should be denied to help themselves and their child. I had to make a decision, when Chemo was in-effective, I remembered this quote: When you are on the edge of a cliff and there’s no way out, you better grow wings OR take a LEAP of faith. This is what I did.

48 harrowing hours

Posted on January 16, 2014 by admin

I am astounded that I am still here. I am not exaggerating. The whole past months I was continuing with cannabis, I was in so much pain that I was just an exhausted, weeping mess. Every night, between 1:00 and 4:00 A.M I woke up with great abdominal pain. I would try to take 1/2 Ibuprofen, with a half of Tramadol. Might as well spit into the wind. I would put heating on it, I would fix tea, etc. I twist and turn and I could not sleep. Could not figure out why MJ was not helping much.

The next thing that happened was as I was on the couch and my abdomen was extented and I had ‘gained’ 17 lbs starting chemo. I kept telling the nurse, I don’t know why I gain as I can hardly eat and have to have Marijuana vapors just to get a few bites in. Well, December 29th, the day when this ‘hard knot seemed to ‘snap, break, sharp pull, etc. I nearly blacked out with pain. Some time after I had the urge to use the bathroom. Seemed like an elephant got there first. I had lost 16 lbs in 2 days. I am holding my ‘old’ weight even though appetite is still a problem.

The way I am dealing with food is different now. It occured to me that we always expect to sit down and eat our plate. When you’re nauseous that way too much food to look at. So, I wouldn’t eat. BUT you HAVE to eat. Then I had the idea to minimize. I am using my small, tiny prep bowls and would put 3 grapes in one, 2 apple slices in the next, banana, etc. In between, I would use my MJ vapors to produce appetite long enough so I can eat a few bites but I ate throughout the day. I’ve become addicted to Wendy’s Chili. When I can’t cook, that’s is great to have.

The other worrisome change that happened was my mental agility. I felt as if there was a steel band around my head. Pressure. I would talk to my friends and after every 5 seconds I would ask, ‘what was I talking about? Where am I going with this? It made my friends pay excellent attention as they had to remember. NAUSEA. NAUSEA. That was my companion all day. I just did not know why. Then came: Depression, anxiety, paranoia, nausea, loss of appetite, I was getting scared as I felt I am falling into an unknown hole. But by being unable to eat, I was nauseous because I had no food. Terrible catch 22. Since I was already up, I researched Rick Simpson again. I had always used the You Tube video info. I knew that one cannot overdose on Marijuana. You may get really sick, they said, like bad drunk but you will not die as one would with alcohol. I am the living proof.

There were the ‘Side Effects listed, if you take too much stuff. I had overdosed regularily for 2 months. All of the symptoms that are listed further up are the ones. My goodness. Trying so hard to save my life- may kill me! But from chemicals NOT MJ. I stopped right away to hydrate and try and flush it out. But I was so nauseous. VERY surprising, I had absolutely no withdrawal or anything like one would with some REAL BAD drug. Not addictive UNLESS you decide. When I’m well, then I’m done stuff!

Doctor exams, all well. They said not to try to diagnose myself. I said, well, I’m sorry but I had NOT HAD the best of luck with proper diagnoses. Besides, that’s what we do. When things are not really helping, you just want to do it to get it done. Just want the pain to stop. Just that tiny bit of ‘mental problem’ the weeping, etc. is so very painful (even if it is not you) that ‘anything’ would do to ram it in there to STOP.

My blood pressure , three hours later when I saw doc, was still 190/95. She said, she could not believe that I did not have a stroke. Also, the horrible, horrid abdomina pain was an “bowel obstruction’, which is fairly common with chemo. (Also, chemo injures the colon. A woman from my support group, died because most of her colon had become thin as paper and then broke when fecal matter moved through. Because I had been regular I did not know.

CA 125 cancer marker numbers were UP but not much. Doc said, what with all that trauma of colon and nausea and a new Lab may be responsible. I am NOT starting another chemo. My colon is trying to repair itself. I did say again, that I did NOT think that this was the ‘Cancer’ . Maintaining that 1/2 of an Ibuprofen would not help managing cancer. Besides, it would also be painful during other hours. (Oh, excuse me. I just ‘diagnosed’ again. :-)I think it’s healthy LOGIC. I’ll just keep it to myself. Tuesday CT scan to see ‘inside’. At the cancer center I was so manic and wired, that I had to ‘suck’ on my vapors to get rid of feeling. The problem was, that there was too much SATIVA in it. This works on your mental receptors. That’s why they are using it on Alzheimer patients now. INDICA is the one for cancer and many other illnesses. It is usually mixed because Indica seeds are very hard to come by and GOVERNMENT does NOT allow the cultivation. So, we have a ‘lower’ quality. I suppose, Gov wants to make money too.

A friends’ 95 year old mother is on this for Alzheimer’s and doing pretty well. (She still has Alzheimers but not so severe and has bright times.

While I was gone, my sweet friend cleaned the whole house! Vacuumed. Had taken the morning off to give me this gift. THIS IS WHAT WE NEED. Someone to help. When I walked in, I cried. She also came after work to stay with me until my other friends came. They had gone out for their anniversary dinner. (My friend texted if it was possible t come, not knowing. ) I will cook you a 5* menu when I’m better to make it up. Love you guys.

Also had to get back on Warfarin because ‘those numbers’ were too low.

Trying to get cannabis after my son left for a little time off, turned out to be a very stressful circus. It has become harder and harder for me to get this ‘paste’ down, even with aplesauce. My gag reflex is the best working thing in my body. I was anxiously awaiting my appointment for blood work to see new results. Also had appointment with my ‘old’ Oncology surgeon who gave a big hug and smile. I had wanted a CT scan to see if the tumors had less or more activity. I mean, I had 2 hours between appointments and I didn’t want to make an extra trip. Not till Tues.

The night before my appointments, I was not feeling well. But, as usual since there is nothing else I can do, I used my homespun tricks. Finally, I got up at 1:28 A.M to take a hot bath with epsom salt, which always helps. I ran the water into the tub, added salt and could hardly wait to go into that wonderful warmth. I figured since I’m already here, I might as well shave my legs, now that’s it’s growing agin. Suddenly I was overcome with a nausea so severe that I thought this is BAD..black spots in front of my eyes and I could hardly breath. I propelled myself out over the rim of that high, old tub, as I was afraid of ‘blacking out’ and drowning. There I was. The skin of my whole body was Lobster red. Never experienced anything like it. I looked over to the tub and all I said was, ‘well, that won’t do.’ I crawled to the bedroom because I was shaking uncontrollably and felt like fainting. I need HELP I thought. I called my good friend Bonnie. There are REALLY friends you can call at that time. She drove right over. She stayed with me until my other friend Berle, came to take me to Grand Junction. As we were sitting there, talking, I remembered suddenly a sentence in a conversation that I had with a nurse friend, right after the blood clot incident. I was telling her about my tub/salt preference. She looked at me funny and said: YOU CAN’T TAKE A HOT BATH WHEN YOU ARE ON CUMADIN! WARFARIN!! I had a severe reaction and nearly had a stroke. That’s what that bright lobster red was. I had taken the pill the evening before.

Some people received wealth, Beauty, talent at the time of their births. I? I received 9 Lives. THANK GOD!

This is for my support group “TEAL Warriors:

Dear friends. I’m using this way to answer requested info.

Marijuana is the plant. Cannabis as a product, divided into INDICA and SATIVA (many otherstrains and combinationa.) ONE product dowes not work on everything. It’s like cooking. Let’s sa, recipe calls for Parsley and Dill , they go well together but if you add some curry that’s not good. The right strain for the ‘right’ illness. You need the TEARS of PHOENIX model, not just ‘some oil. I can’t afford Rick Simpson’s oil as it is %4000.00 for 3 mos. Still WAY cheaper than chemo but WE have to pay this. I needed an EXTRA $1200 per month to buy my cannbis. My son thinks, that these prices were before it became legal in a few states.

My son gave me the Link to a Foundation to help financing the treatment. I can’t access the link right now but I will later.

You remember how you start? a small rice-grain size with European butter to take it. The higher fat content will intensify the healing properties. What cannabis does, is to instruct the cancer cells to committ suicide without harming surrounding cells. This could have been the reason that my first month on it, the numbers were lower.

Tears of Phoenix is NOT like cooking OIL. It’s a dark, dense PASTE. You take it x3 a day. Also supplement with Tinctures, Vapors and WEW. (What ever works.)

Victoria, and all of you precious friends try to get this. I cannot promise ‘it’ will do exactly the same with you guys. Everyone is different. The break through from blocked bowels was the prolonged (2.5 mos) use of cannabis. The properties of the LEAF PLANT had worked it’s way through, THANK GOD. After that, the terrible pain was gone, the nausea dissipated. Oh MAN, I can take a deep breath without thinking I’m throwing up. Just the next day, I’ve eaten more than the other 3 days combined.

Research : Rick Simpson but this time NOT on You Tube. There’s a new web site full of GREAT info, testimonials. Go to www.marijuanadoctor.com If you need more info, CALL> xxxooo

CANNABIS vs CANCER

Posted on December 31, 2013 by admin

At first, I wanted to wait until I had results from CA 125 blood test. But, meanwhile, things change and my memory is not the best these days. In 2 weeks, I will start my 3rd month on cannabis oil ONLY. People have asked me why I would not take anything else with it. Like, chemo or pills. How would we know WHAT had worked? I need to know that it was the cannabis. It’s vitally important to many people who are waiting to ‘see’ how things turn out with me. Of course, many cancers are different and this treatment is too new but we do know, it works!

I don’t understand it. Someone has cancer. They do all the conventional treatments. Then, one day, while they are settling into their chemo line and sit there, while Toxins run into the body and they’re trying so very hard to use gentler Visualization of this ‘liquid’; why they would NOT run out and get something far less damaging. I thought, once they see that it works and cancer numbers are coming down, that this would convince them. Well. Knock me down with a feather!! That did not happen. I suppose people will do what they KNOW. No matter that it fries their intestines, damages veines, loss of hair, appetite, sick, sick, sick till the cows come home. And you want to use it again? How many people know that Chemo comes from Mustard gas??

Well, then comes the day that they tell you, you have become “Chemo resistant’. When you have no choice, then you eat dirt if it helps!! Wouldn’t you think that in over 50 years of cancer reserarch and the BILLIONS of dollars for research, they’ve not come up with something better and more humane. Already in 1989 the Cancer Industry made more than 100 MILLION per year from cancer, in the US alone. What does that tell you? Huge business.

Christmas was a quiet affair and sad. Grandkids are too far away, and so is family. No tree this year. No money for frills. It all goes to ‘Cannabis.’ This ‘new’ batch though was MUCH more pleasant to ingest and it only takes applesauce to get it down. The taste for that split second in my mouth, gags me. I would never make a ‘Druggie’.

Here is a BIG shout out of THANKS to the group: German Girls Living In America.’ It is due to their compassionate collection and donations, that have made this possible. Ihr Lieben. I cannot thank you enough. Also, your never wavering Belief and support means the world to me. Other friends have made generous christmas checks and so I could have another month.

Cameron is in New York. A well deserved Respit. I’ll try not to bother him while he is there. (Hope you have LOTS of good times, son.)

To get a refill on cannabis, I called the producer of this oil. (Usually, Cameron does this for me as it takes over an hour to get it to Montrose.) This turned into a circus of frantic messaging. But, finally that nice guy got a ride and DROVE all the way to bring me my medicine. At $550.00 this makes it very expensive and NO Ins pays for this. (NOT even Affordable Care Act. 🙂 This last about 2 weeks.

I’ve read that to be better equipped to fight cancer, one needs to be ‘comfortable’ with death. Accept it. Only then can you move on. (Seems paradox but, if that’s what it takes?)

So. I’ve written and determine what is to happen with my (meager, few) possessions. I’ve decided, that this spring I will go to the gorgeous Black Canyon, find me a pretty spot and when the time comes, put the Ashes there. Take a photo of the area and breathtaking surrounding of the canyon and its Billion year old rocks. But, of course this little excercise is not what is meant. Taking stock, asking and giving Forgiveness.

In pondering this one, it surprised me how many people are holding on to ‘Stuff’. Someone very dear to me, brought up an incident which happened over 25 years ago! It was nothing earthshattering but obviously bothered enough for so many years. Need to forgive. The heart is big and elastic. It will adapt to any size. Just not too small.

I’ve been doing pretty well for most part. Twice, there was an episode and always at night, that the pain was so excrutiating that I layed on the floor, in fetal position, just howling. I put my feather comforter over my head, so the neighbors wouldn’t hear. But, there was nothing else I could do. This took about 2 VERY long hours before it abated.

I have had big problems with loss of appetite. (One of the 4 symptoms of ovarian cancer.) I look at food and I’m hungry but then it nauseates me. No matter what it is. THIS is what is soo debilitating for cancer patients. They starve to death. If I did NOT have my MJ Vapors to produce appetite, I could not eat at all. This way, I can eat small amounts and get appetite. Even though, I’ve lost 15 lbs so far. Cannot and am NOT allowed Dairy as it produces painful inflammation. (Eggs are not dairy.)

Yes, I have Morphine, Tramadol, Oxycodon, etc. I cannot take ANY of it. The side effects are too severe. All I have, is my little 600 mg Ibuprofen. I don’t ‘like’ it either. It damages your liver and I already have a ‘cancer leasion’ there. But, what to do? At some point I said, ‘Dear God. I’m not doing this anymore. I can’t stand it anymore. It’s been (nearly) FOUR years with this bout. I just want the pain to stop! Yes. Cannabis helps and I do take it when I go to bed. But then, it wears off and by the time I get more in, I’m already in pain. (GOSH. This is sooo BORING to talk about. I’m sick of it myself. 🙂

Wishing all of you the VERY best of 2014. Make it YOUR year. Change your lifestyle. Walk a little more. Be kind. Be tolerant. Thank you for sticking with me through this journey.

HAPPY NEW YEAR.

cancer, marijuana and no GPS

Posted on December 11, 2013 by admin

What a month it has been. I had problems with ingesting the cannabis ‘paste.’ Just the smell or the taste had me gagging. Peanut butter nor Nutella worked. Now I am only having it with applesauce, that way I don’t need to chew, just swallow.

The same ritual applied. I take my ‘paste’ and then I have to sit on the couch. I have all necessary things close by. Remote control, water, meds. Since I don’t function well in this state, cooking and eating have become a challenge. But more so, is not having an appetite. No matter what I look at to eat, I lose all interest. Some foods ‘gag’ me. NOT the food itself, just whatever causes this. (Went to my regular Doc here who then says:’ Well, it’s the cancer’.) We are both very pleased how my leg is doing. I am getting closer to ‘speed walking.’ Friends and my neighbor bring food. Sometimes, they even attempt conversation but most of the time, after 2 words I lose the continuing thread and have to ask constantly:’ What were we talking about?’

Each night, for about two hours I wake up from a sound sleep because of abdominal pains. When I asked my local doc about it, he said: “Well, it’s the cancer.’

Last week, as I put my measured amount on the spoon and looked at the syringe, I noticed how little was left. Cameron had just brought it to me, 2 days prior and here it’s already low. I dashed off a spirited message to call the supplier and tell them they shortened me. He replied right away, ‘Mom, you are taking a lot more than in the first month. That’s why it’s less. ‘ I was a little chagrined at that. Had not thought of the doubling every 4 days. (Well, at least until you take as much as you can. ) The closer time came to have the blood work done, the antsier I got. New Lab person. (Would that interferr with result? ) What if he drew it wrong? And then we wait……

Yesterday, was the appointment. I didn’t take the ‘paste’ so I could drive. Met with my Carrie for Lunch and she went with me to Cancer center. Finally time to go in and see Oncologist. She came in with her papers, asked how I was doing, etc. Then I said:’ What are my numbers? I’m not saying another word until I know my numbers. ‘

‘Didn’t I give those to you , yet? She smiled. I shook my head as my heart started to hammer. What would the answer be? What if this stopped working too? What will I do? Should I start give away my worldly goods? Make a will? (Of course I am sure that MJ had a play in that mental conversation. )

IT’S 99 !! she said. OHHH, Oh, YAY, YAY a 99 a 99 a 99!!! We hollered and danced and my nurses teared up. (I suddenly remembered the German song about : ’99 Luftbalons’. The number 9 is the highest number in Numerology. Someone said, this was an excellent number. 🙂

THIS IS HUGE! Imagine. A little plant. Natural. NO side effects. NO trauma. Just a little, woozy feeling. “THE NEW CANNABIS CHEMO”.

My Oncologist said, ‘One more test, next month and if that’s lower too, I’ll change everyone’s treatment option.’

I asked for direction to their MJ Dispensary and was told that in Grand Junction, the ‘Powers that be’ reneged on their voting MJ in and brought Authorities in and raided the dispensaries. WTH?? Now, these people, who so desperately need it, have to go out of town. (Come to Montrose. We’ll help you.)

Shall we compare? 1 chemo- $5000.00 (Ins pays, medicare pays 80%. Blood tests, scans, appointments, etc. The effectiveness of chemo, questionable now. 1- month of Cannabis Treatment $1,200 and it WORKS but no one pays, except me. Wonderful ‘Tears of Phoenix’. THANK you to Rick Simpson to have fought the fight. I was so worried and stressed to figure out, how I would pay for this. I put a wedding ring set up for sale (for half its worth) and posted it on FB. No one wants to buy it. They all want me to keep it and are outraged that I’d have to resort to this. I told them, it didn’t ‘mean’ anything’.

Enter the ‘German Cavalry’. These women got busy and immediately went about to set up for donations. I cannot tell you ‘Girls’ how very, very grateful I am because in essence, ALL of YOU are saving my life. DANKE.

To my son, my daughter, grandson, granddaughter, BFF Irene, and all my wonderful, beloved friends “THANK YOU FOR HANGING IN THERE WITH ME.

Meanwhile, getting now ready for Christmas. A friend is coming today and we’re baking Stollen. We will have a wonderful Christmas. In January, next test. Then I’ll go on a Road trip to spread cannabis miracle. 🙂

….the envelope goes to???

Posted on November 18, 2013 by admin

How different time seems when you have different things to do. Like, trying to figure out how to get the ‘canabis oil’ past my tastebuds? This is what I have the most problem with, the taste. I have hidden it under Nutella, butter and peanut butter as well as applesauce. But, I always said I would eat dirt if it would help.

Finally the day approached when I was to go and have my CA 125 (cancer blood test marker). I had the whole CBC panel done as well. Just to see how I functioned without chemo. I tried to stay busy but with taking this ‘oil’ I was un-busy most of the day.

I was having doubt-thoughts too. ‘What if? what if this does not work? what if there’s no other chemo? what if …..

Meanwhile, what with absence from chemo, my body is feeling much relief. My leg is so much better.

Finally Monday was here and my grandson went with me. When I was called into Dr. M’s office, I chatted with her for just a minute and then said: ‘Well?’ What are my numbers?? She smiled and said, ‘I don’t know what happened but it went down 28 points . (I say 30 as no one was quite sure of the previous number.) WOW. Lovely surprise. I twirled just a little down the hallway. NO chemo this month, either. Another month off and keep taking this cannabis oil. Took my grandson to Telluride as he found a job and staying with Cameron.

Bought some more oil and sure hope the numbers keep tumbeling down.

My main goal is to sit on the couch and not fall off. What I like about it, is, that there’s no ‘Hangover’ feeling. Dreamless, restful sleep.

Gearing up for Thanksgiving. Whether there are just the three of us, or we end up with half the neighborhood for ‘Thanksgiving’, I have LOTS to be thankful about and for, and I am. Very much so. I want to thank ‘YOU” for hanging in there with me. For all of your support, encouragement and prayers as well as the recent generosity with donations. Received a beautiful ‘care package’ from an anominous ‘German Lady’. THANK YOU>

Look Ma! .. No net!

Posted on October 23, 2013 by admin

So. How does this saga continue? On Oct. 14 th with Cameron in tow as well as Adam, who was visiting, I showed up at the Cancer Center. I visited Sue first.

Sue has had ovarian cancer over 3 years ago and dealing with a recurrence right now. It is really upsetting and worrisome that NOTHING was detected. She had her bloodwork and tests, she had her CT scan and all showed ‘clear’. She had complained about pain but also ‘diagnosed’ herself… thus saving docs the trouble and cost of medical school. She kept telling her oncologist that she may have ‘appendicitis.’!!!! I believe that ANY time a cancer patient complains of a long lasting pain, you don’t send her home. They all trusted these tests. And then, she had emergency surgery and it was finally noticed that she has new tumors. So. Now a much worse scenario. But she’s fighting the fight. As one motto says in our group: Fight like a girl”. Big shout-out to Gerald, her husband, who is such a tremendous help with everything.

We’ve lost 3 of our ‘Teal Warrior’s. Wow. So young. There’s Sonya, not quite 48 years who did not get to see her grandchild being born. Not even the measly-amount of 3-6 mos ‘given time’, was upheld. We are all reeling. Of course, the unspoken fear is, that ‘YOU’ are next. We’re all moving in a little closer to each other, as if for protection. Who will the Boney guy pick next? You all duck!!

Here I am, after a whole month being absent from the ward and visiting Sue, I went to Doc’s office. Cameron was there. First thing: Scan shows no new growths. No significant changes. I asked her if she thought I could stay off chemo for another 6-8 weeks and give this Tears of Phoenix’ a chance. If we start chemo and, at the same time, take this, I won’t ever know if it really worked. Since the last 2 chemo’s did not work anyway, I’m not losing a lot.

It does feel odd. No chemo. No radiation. No magic pill. Only a tiny, dark powerhouse. I spread that grain of rice-size cannabis on my cracker and the taste of it, errupts in dramatic shakes all over me. I do not like this at all. Yuck. I have now sheduled my ‘waking errands and chores’ before I take anything because I am totally useless, once I have it.

It’s a good thing, one can’t overdose. I thought I was ready to doulbe my dose. It had been 10 days, although when I have an appointment or some things to drive to, I won’t take anything because I cannot function. After about 35 min there was this pressure around my forehead and my surroundings were compromised. Like swimming through Molasses. I tried to get up but couldn’t. It took all I had to GET up! When I finally managed to be upright, I bounced off the wall like the bumper-game machine. That night was really horrible. Dreams and images, torn and loud.. …but I noticed that was me coughing my lungs out. Terrible cold to boot.

My grandson, nearly 19 years old, is here to help me. All the way from Alabama. They move 10 years ago but he’s till our Colorado boy. Have not seen him in a long time and I sure hope he can withstand my present life. We had the ‘booze-drug’ talk and a few others. Done. He has worked in the yard, cutting down some of those silly trees that have thousands of seed pods to procreate and they’re such a nuisance.

What if ‘Tears’ of Phoenix’ does not work? Well, there are a few chemo’s left (that may not work either.) Meanwhile I now have problems walking with these compromised legs. Still taking Werferin but can’t go far. Maybe around the block. I really have to increase my distances. I am just tired.

I borrowed Pumpkin. My best Poodle buddy. He snugggles up and stays close and is totally devoted. I wish he could fetch and carry. But, I have to get up and go for a walk with him. (NO! Please. No dogs for a gift.) I have Cassie next door, whom I love and visit. There’s Bruno, another fun dog and Pumpkin. Those are enough.

Chemo Limbo and Tears of Phoenix

Posted on October 7, 2013 by admin

There is always something else to rattle my brain and make me shake all the way to my “argyle socks’, if I had any. I’ve had another CA 125 (the cancer marker blood test) after my second ‘Doxil’ chemo to find out how it is working. Well, the Hawaiian Punch carried NO punch. My numbers went up a few points. In itself not a drastic change were it not in the middle of CHEMO treatment!! Now what? I can’t quite understand it. This had never occurred to me that chemo may not work. Doc is not giving me another chemo until we find out why this one has not worked. She will say:’ Cancer cells got smarter’.

What is our option now? Atom bomb? Next step is CT scan. Is there, perhaps a new tumor? Is this the preventing factor that cancer cells don’t die? In a few days, this question will be answered. Wait for blood test, wait for phone call, wait for news, wait for next step. Wait for CT scan. Wait….

I had researched the ‘Tears of Phoenix’ quite a bit a few years ago but

THC and CBD mixture the size of a grain of rice

could not find anything on where they make them, who makes them, what it is exactly. Meanwhile, there is a LOT of information on You Tube. The founder’s name is Rick Simpson. He had to leave the country, years ago because the Fed’s were after him. This goes with all the horrid meds are allowed but let someone invent something cheaper that actually helps, well there’s hell to pay. Of course, Medicare (Nor any other ‘care’) will pay for this. So it was out of my budget zone.

Then, something absolutely wonderful happened. A Facebook friend told me that she and a few of her friends were talking about my situation. The exorbitant cost of being sick. She asked if I had a Pay Pal account because her friend would create a “Widget’ for me. (A ‘what’s -it??) Never heard of it. But soon, there was this Widget on our Camino page (under ‘Read our Story’) as well as on the group page.

Pretty soon, I heard the ‘ding-ding’ of e-mail alerts on my I-phone. I looked and saw names I did not recognize, sending money. More names, some I did recognize from my German Group. ‘German Girls Living In America.’ Had not known much about the other group called ‘Laester Schwester’. Seems they are at odd with another. BUT, for my sake, this time, there was only the desire to help, putting aside their differences. (Unlike the Government, this seems to work.) So, with utmost gratitude and waves of overwhelming feelings of so much kindness and sharing of even a few dollars, had me crying. Their generosity now allowed me to purchase the very concentrated Hash oil to ingest. For the amazing hash properties to go in and tell this ‘smart-ass’ cancer cells to commit suicide.

I really, really want to thank all involved of helping me so I could buy this stuff. I was a little apprehensive. Here I am again, taking and trying more ‘stuff’. Going on some Internet info and FAITH that this will not only work but better and cheaper than chemo!! –which does not work.

Help Inge get treatment that works. You can do so here (ignore the ad on top) where it says “Pitchin“:

I take this on a cracker, with just a little butter. The size not much larger than a half a grain of rice, and take it 3x per day. The tiny Powerhouse looks like a ‘ mouse-turd.’

So. I had my first cracker with the oil on it. My son took me out for breakfast. Not knowing what to expect, I thought oh, this is not so bad. Other than a little off center, I didn’t feel anything. Luckily not, till I got home. Then had to sit on the couch. Fog descended, things seem to move much slower. I felt like I was talking very slow myself. My son, meaning this in a good sense gave me a double dose for lunch… just before he left to drive to a wedding. Well, I sat there much later, still. I thought, ‘good Lord, I sure hope somebody comes and feeds me’. Couldn’t get off the couch. Fell asleep in the middle of one of my favorite programs. I’m thinking, the world needs more of this. They won’t argue, fight, kill each other. My foot started to feel much better but I’m not sure if this is a coincidence or some ‘early healing.’ I can’t believe that this tiny, eensy =weensy bit has that much POW.

So. After 4 days, we double the dose. I hope I have enough time taking this hash oil, before someone decides to throw chemo after it. I want to see how it helps but if I do get another chemo, I won’t know for sure whether the cell death is due to chemo or hash oil. But then again, if chemo does not work…again… except make me miserable and sick, I may ask for more ‘non-chemo’ time to allow hash oil to work. I guess, it depends on the CT scan results.

Meanwhile A BIG, HUGE Thank you to my German ‘Girls.’ Ich druecke euch alle in tiefer Dankbarkeit, das ihr mir diese Lebenschchance ermoeglicht.

Great Kindness at the POW WOW

Posted on September 23, 2013 by admin

For the past 15 years I have visited the annual POW WOW, which was only 30 min away. I may have missed one or two when I went on the Camino and once when I went to Germany when my brother died.

Always loved the colorful Ragalia. (I was told by one Native American whom I’d asked a few questions that these were NOT called ‘costumes.’ It takes a very long time and skill to sew them and especially all that wonderful bead work.

This year I had also fully intended to go but I had also had painful ‘issues’, again after chemo. But, I thought this may distract me. So, I took my umbrella as it looked very much like rain and walked the 5-6 blocks to our Fairgrounds where the Pow Wow was held the last couple of years.

I was a little early and so walked around the huge hall and looked at all the beautiful jewelry, paintings, blankets, good smelling grasses and sage bundles. I picked out 2 necklaces for my granddaughter and her beloved. I went to the kitchen section and was greeted by one Native American woman, whom I’ve known for years. She came out the side door, beaming and enfolded me in a big hug. “How are you?” she asked. I pointed to my blond wig and said, ‘I’m surprised you recognized me with this on.’ She answered, ‘I would recognize your beautiful smile anywhere. ‘ She gave me a cup of mint tea, from leaves she had grown herself. After a few minutes conversation I moved on.

I had not gone the whole perimeter as I had leg pain and sat on the bottom step. As I looked around I saw some more booths against the back wall and since I still had time before the Grand Entrance, I got up and went there to see their wares. A friendly Native American came toward me with a beautiful necklace but I held my hand up, smiled and said that I was sorry but simply could not afford one since I had lots of medical bills.

He asked me, what was wrong? I told him that I have cancer, now the second time. He nodded and told me, somberly that his wife too, had breast cancer and died 5 year ago. He said it was the worst but also awesome experience he’d ever had. (Awesome???) He said with their ritual and her grace, how she dealt with it. He turned and picked up something and then handed it to me. I was a long, gray feather with two smaller feathers, one yellow and one green bundled and fastened with a leather strap. He said that this was his gift to me. It was a “smudging Feather” and meant to heal. I immediately became emotional, and tears ran down my face. He took a step toward me with wide open arms and said, ‘ Come here, sister.’ Made cry more and I was so embarrassed. Here came a younger woman, also hugging me from the side, and a third one and she said, ‘this is a healing circle.’ I had told them that I had wanted to go to Santa Fe (weekend before) to try to find a Shaman. That I had wanted to visit Santa Fe for a long time and that it almost felt like a ‘pull’.

After a few minutes I had myself in better control again and he handed me a napkin. I smiled and thanked him. We exchanged a few more words and as I turned to leave, the younger woman approached me, with a Native American man in tow and told me that he was a Shaman and that he would take care of me. I said, that I had no money. ( Because I’d read in my Santa Fe research, that they could demand $300-450.00 for a session.) He shook his head and took my hand and sat me into a chair, at a little more private area.

He told me that he could see my aura, the rainbow colors and black spots which were blocking me. He took my newly acquired ‘Smudging Feather’ and waved it up and down my body, chanting in his native tongue. He stopped one time, looked at me and said, ‘your chakra is way out of line on your right side and it has been that way for quite awhile. I will try to align it.’ On went the chanting as he moved the feather from head to knees. He said, ‘oh, there is a big blockage in your leg. ‘ I said, yes, this where I have blood clots. ‘ (How could he know?) He told me he would now ‘give me over to the ‘Great Spirit’, to heal me.’ That’s when I started crying again. He too, had tears in his eyes as he looked at me and said, ‘if the Great Spirit would not be filled with love for you he would have not put you in his (Shaman’s) path.’ He told me, what a beautiful spirit I had. He asked me, if I felt the heat of his hands (which never touched me) and indeed I had. He apologized as he had had many sessions the day before and was thus weakened. I told him, that I was grateful for anything he could give me.

After about 30 min he got off his knees and asked me, if he could hug me. I totally said yes. I took the only $20.00 bill I had and handed it to him, saying that this was all I had but wanted him to have it. He thanked me big time and said, that most people didn’t even say Thank-You and that I was only the second person within those past days that had given him a GIFT. He also gave me his phone number, in case I wanted to have another session. Imagine my delight to see that he only lived 30 minutes away, and I was prepared to travel 700 miles.

I sat on the bleachers and enjoyed the rest of the program and felt very much at peace, marveling at the set of many ‘coincidences’ which had brought me there that Sunday.

Yellow Love and 2nd ‘new’ chemo

Posted on September 19, 2013 by admin

After my ‘new’ chemo, I was trying to be as ‘normal’ as I could. Doxil, the charmer had different ideas. The depression and deep, spiral to darkness had me scared and overwhelmed. I absolutely can understand when people, who hurt like this, committ suicide. Even though a tiny part of my brain did whisper that this is ‘chemo effect’, and interlectually I understood, it is very hard to deal with it. I’d go to the store and as I stood before the pasta a wave of such sadness came over me, I started weeping. I ran to the bathroom to control myself.

It also happens while watching T.V., going for a walk. Even in the tub and the howling that was produced scared even more. I definitely need to ask what is available to help. (Probably Xanax or another drug which will have its own side effects. Maybe hash oil would work, if I took a larger amount to put me to sleep.

On the other hand, however excrutiatingly real this feels, it is NOT a reliable emotion. The brain has been altered by chemo and therefor we need ‘sound minded’ family and friends to help differentiate. Those people who know me best and can sort through this mental mess.

On the tail of this darkness comes paranoia. ‘I’ll probably die. I won’t be able to get well, this time.. and other, similar thoughts. I think of my daughter, grand daughter, grand sons and my son. And I weep because I already miss them so much. I weep because, well, because. A song, a bird, a flower, a word, blue sky, rain, the mountains , because I have cancer, because I have blood clots, because I feel sorry for myself and because of no reason. My emotional equilibrium is way off. Its pendulum swinging from one extreme to the other. Friends call and ask ‘how are you?’ I don’t know what to say anymore. This has been going on for sooo long. I want it to be over. I want some semblance of my life back. I want to walk and just enjoy nature around me. I definitely want the pain to stop. Backache, abdominal pain, constipation, heart burn , on and on and on. I am exhausted by it. And now the question remains whether this chemo would work. I have no date scheduled for the nextinfusion, since we don’t know. Added stress. (What do you mean, it may not work?? What is in that bag? Sugar water?)

I get so tired of people complaining about such small and crazy ‘problems’. I know it is not their fault that I am in this situation and I really don’t blame them for getting tired of this long journey. Not as much as I am.

So. My wonderful friend, Bonnie came last week, holding out a plastic container with paper towel cover. I asked what was in it? She told me that her 2 grandsons (9 and 5) Harrison and Mason (whom I know and love) had gone mushroom hunting with their dad. They remembered that I LOVE chanterelles. They had walked 8 miles ( 4 in and 4 out) to find these for me. Imagine. Walking that far and that age. I was in tears from this gift of LOVE. Impressed and proud as well. You can’t PAY for this sort of thing. I cooked them the next day and ate them with great appreciation.

Then, it was time for my 2nd Doxil. Short check up: Heart, lungs, prodding and pushing on abdomen, blood tests (which were ‘excellent’.) Then, off to Infusion room. After the pre-meds, here came Hawaiian Punch colored Doxil. It woud not go in. Something wrong with the tubes. After a while, new tubes were attached and then it flowed pretty quickly. Had another CA 125 drawn to check whether cancer marker went up? Oncologist told me ‘not to freak out, if it went up because usually it take the 2nd one to bring marker down.

Meanwhile, I saw on my support group posting, that 2 more ‘Teal Warriors’ had died. Had me very upset as I had just ‘conversed’ with them, not so long ago.

Then there’s my friend Sue, who has a recurrence. Shout out to you Sue. Fight like Hell. If you want to know other and or additional information, call or come.

After the 2nd chemo, Cameron had to leave for a couple of days and invited me to come along to Silverton, where he had an offer, for the free work he had done, to stay in this B&B.

A very nice, Victorian house, blue and white trim. Lots of flowers and gorgeous views. Since this was short notice, the owner had previous engagement and so we had the whole house to ourselves. My room was lovely and next to it a huge bathroom with BIG tub and jets. I was (what else?) in a lot of pain and so Cameron got some Eucalyptus Epsom salt and I took a hot bath and felt some better. We took a couple of drives around the area and we saw just the most gorgeous surrounding. (We are on the ‘Western Slope which is many hours away from the devastating flood zone.) We went to the grocery store and I fixed our supper. I tried to go into a couple of stors but my back was killing me and so, frustrated and upset that I simply cannot DO anything, we went back.

I believe now, that this has to do with high altitude. Silverton is nearly 10,000 feet. My veines are compromised due to blood clots and the thin oxygen may deprive organs and extremeties of needed blood flow and thus cause pain. (Right? Dr. Inge??)

My Bonnie came Tuesday, punctually as always and for so long now. She took me to diner and then a movie. “The Butler”. Except for Eisenhower, the rest of the presidents is the same time I have been living in U.S.A . September 16th marked my 50th year. I went through all those growing pains and historical times of this country.

One week after chemo, the horrid depression has disappeared. THANK GOD. I have not called for my cancer marker result. Same reason as before. IF it went up, nothing I can do (except get upset). On Sept 30th when they draw new test, THIS one will show what has, or has not, happened.

New Chemo… and no Germany

Posted on August 27, 2013 by admin

I had 2 weeks in between being thrown out the ‘carbo/toxil’ chemo club and had to wait to set up the new ‘Doxil.’ Had to have a heart test prior to receiving this new one. Tech said, I had a good heart.

So. Tuesday, August 13th Cameron drove me to Grand Junction. I was pretty anxious. How would I react to this? What side effects would it give out? What IF this one does not work either?

Saw my Oncologist and we took blood tests to see what happened in the 2 ‘off” weeks. Then on to the chemo room. Sat in a recliner and waited to be attached. The chemo nurse wanted to tell me all the things and side effects that ‘could’ happen. I told her, I did NOT want to know. She said, ‘really’? I nodded and said, well, if it’s not in my head then I can’t wait for it to happen. Otherwise every twitch or sudden cramp will mean ‘is this it?’ I knew one of the side effects. Painful, swollen red hands which will crack open. (Of course, my old chemo companion ‘constipation’.)

Here came the nurse and she hung the clear, liquid bag with pre-meds. Saline and other things which I can’t remember because I have also ‘chemo-fuzzy brain’. (Oh, yes, there it is.. Benedryl.)

Soon after, here came a bag with red liquid in it. Leaning way back in my chair, I asked “what the hell is that?’ They should have told me that the chemo would be red. Just like ‘Hawaiian Punch.’ I had to really breath and work on my psyche to allow it in. Even to bless it.

We went home and then worked the next few days on loosening up constipation. I am soooo tired of that. It’s painful and uncomfortable.

We had also drawn the CA 125 cancer marker. I did not call to ask what that number was. Usually, I’m on the numbers like a tick on a dog but not this time. If it’s up, I reasoned, there’s nothing I can do, if it’s down, goody. (They did not call me either, following my lead.)

As always, there are my good friends (Bonnie, Silke, Monika, Inge and more) as well as my Support Group ‘Teal Warriors’. Then, lots and lots of cheerful messages and support from ‘German Girls in America’ group. It sure helps a lot keeping some of the fears in check.

But, I had a real strange feeling as if something had shifted, internally, irrevocably. As though, all my cells ‘moved’. I can’t explain it any better. But, it had given me night mares. (No, no drugs, pills or whatever.) I have also had two dreams of my own funeral. THAT was weird! And upsetting. It occured to me, that ‘this’ could get me. Maybe I can’t outrun it. Maybe it’s nipping at my heels and I can’t run any faster. Premonition? I don’t believe so. Hopefully, just a strange time. Oh, I know. Let’s blame it on the chemo.

I had asked about Germany trip. She said, you have 28 days in between chemo. At first I was happy that I could still go but then, abdominal pain started again and every night, pain would wake me about the same time. I got my beanie bag and heated it, or when it is particularily worse, a hot epsom salt bath. I had asked my local doc for pain med. By the time I picked it up, 3 days went by and then they had ordered the wrong pills. I decided not to do anything as I remembered that any of these ‘stronger pills’ also caused constipation. So I would have to take one due to the pain of that source, just to have the same problem. I asked about Ibuprofen. Not really allowed on my regiment with Werferin, as Ibuprofen would also be blood thinning. But, perhaps I could take a half one? they allowed. Sure enough half a one helped.

When I gave up being worried about eating this or avoiding that because of the blood clot and vitamin K, my test for that improved as well. I eat what I want but careful about K and so now my number is ‘excellent’.

After figuring out that I would NOT have 28 days to go to Germany. I called and heavy hearted canceled. I could not have chemo and run to the plane and leave. The same on the return. I would need a few days either way to feel up to it. That way I would only have 2 and half weeks. Not enough to do what I wanted. Then too, I do NOT want to come back to chemo. I want to be DONE. This is now the 3rd time I have to postpone. Hopefully I’ll get there in May.

A new friend, Michele was coming all the way from Abu Dhabi to meet in person and visit for a week. I got things ready and was going to pick her up on Monday, then spend the night with the Lane ‘girls’ as I had an appointment with Oncologist, last Tuesday, early morning. Saturday, I went shopping so I would have a few things and finished Cameron’s frozen meals as we were going to Telluride Wednesday. As I left the store, I thought perhaps, I should get chicken, in case we needed some more food. Back I went and bought organic chicken. Got home unloaded groceries and then did not go anywhere the whole weekend. Monday morning I got ready to pick up Michele. As I walked to the car, (wanted to clean it out a bit) I was assaulted by this horrid smell. Well, it was Garbage pick-up day and I hollered to the neighbor, ‘ man, it stinks like something died’. I looked in my shed, worried an animal got in there and couldn’t get out. Nothing there. We decided it was the grbage because it had been hot.

I walked to my car and opened it and LORD have mercy!! I got so nauseous, that I was worried I would vomit my toenails. Not sick from chemo but .. chicken. There it was, the plastic bag, laying on the front seat, forgotten to bring it in. I rushed to the grocery store to buy ‘Febreze’. You’ve seen the commercials? Blind folded people being put into raunchy, dirty, smelling cars or kitchens. They all exclaim how wonderful and spring like it smelled. Blind fold off, BIG surprise. Yes? Well, NO!! This is not true. I emptied half a can till I was sick from the mixture of rotten chicken and Febreze. But, I had to leave for the airport. I turned on the air conditioner, all the windows and as I drove, sprayed some more. OH, I thought, to be a dog and hang your head out the window. Luckily, by the time I arrived, it was not so bad.

I recognized Michele right away and was teary when I hugged her. We met up with Laurel, Carrie, and her new boyfriend and precious Hayden. We had a lovely visit with the girls and nice dinner.

Next morning, cancer center. I told Michele, I only take her to fun places. I did ask, this time what my numbers were. Sure enough, during the 2 chemo free weeks, they had doubled. After the first Doxil, no change. But, it was too soon. Maybe test after 2-3chemo’s. My blood test were ‘excellent’. Right to the pint of where my bone marrow is still producing red blood cells. I am grateful that inspite of everything, my body/Immune system is trying to help.

I took Michele to the Black Canyon and next day to Telluride. Went to Karaoke and watched as Cameron (and others) sang. Lots of wolf whistles and female appreciation. He’s got good moves, my son. (Of course this is from me.)

Cooked a nice dinner for the gang but after 2+ days and the altitude and not being able to hike, etc. I needed to come home.

Cameron brought Michele back on Saturday and I took her to the airport Sunday. Sure glad she was here. House is empty and still.

Meanwhile, my son’s and (ex) wife’s book came out in German “Die Katzenfluesterin”. The Cat Whisperer. I am so excited and tickeled. I am going to order it in German.

Next chemo, September 10th. I have all this time to spoil my body and be gentle and kind.

BIG Rollercoaster ride…

Posted on August 9, 2013 by admin

As I was envisioning the end of chemo, other forces were hiding, internally and getting ready for a big surprise.

Oncologist had ordered a CT scan to find out why cancer markers are going up. (In the middle of treatment!) My friend Inge B. drove me to Grand Junction last Monday, to do just that. I put enough Lidocane cream on the port side to last a week. I don’t like the needles. It sure works. After that, she treated me for lunch and then we drove home.

Chemo Tuesday, my friend Lynne took me, dropped me off while she ran some errands. Nurse came to prep for chemo, when Oncologist came in with paper in hand. I looked at her face and my heart started pounding. She shook her head just a fraction but enough to have icy cold fingers grab my heart.

‘What is it?’ I asked. ‘Seems that there is a new lesion on the liver. It was there prior but now it is 10 mm and positive for cancer, she said.

“LIVER??” What the hell happened there? I had problems assimilating the words in their proper order. But as if that wasn’t enough, she also told me that chemo quit working. We took another CA 125 test and it came back, again elevated. So. That means, that the 6 rounds of chemo (18 in all) stopped working because the cancer cells are ‘getting smarter’, she said. I told her, that if this Crap wasn’t inside me, I would definitely be in awe of so much brilliance.

I was absolutely stunned. Shocked. Scared. What to do? Well, she said, we’re going to have to use a different chemo-DOXIL. Once a month. Your hands may get red (inflammed) and skin peels off but you won’t lose your hair! HA I was silent. Just thinking of the misery and wasted MONEY of these chemo’s.

She gave orders to stop the chemo as there was no use putting me through it, when it’s not working. So. I left the chemo ward and felt like I had been thrown out of this ‘exclusive club’. All others were getting their (workable) infusion, except me. I just didn’t know what to do. I called Cameron and told him. I called Bonnie and Monika. Each time it felt more unreal.

Back home, I just wandered around the house, trying to absorb the shock. I had asked about Germany. The whole six month of mental preparation and Joy of being able to go. She said, I could still go, if I can handle new chemo. I would have 28 days before the next chemo and have to be back. We’ll see.

My childhood friend, Irene would also go and that would be the first time in many years we’d be there together, revisiting all the places we played at as children.

I was not thrilled having the whole week and week end looming before me, waiting for new instructions. I did not want to think about, research nor deal with it. My friend Lynne was going to Salt Lake City to visit her parents and she invited me to come along. So I did. Forgot how long a drive this is, for nearly 6 hrs. But, it was nice. We went to Cosco and next day, to the German Deli.

Back home, I was still waiting. So I called them, left a message and Oncologist called back and told me Tuesday- 13th we start. I feel like I got a big chink in my Armor. Things don’t fall together as well as they did. I feel that my body betrayed me. No matter how good I treated ‘it’. I am getting so exhausted by this whole thing. It’s over 3 years now and people are getting bored by it, too. It’s a though I have a whole sack full of rocks and must climb the mountain, only to slide more than half way down and have to repeat, repeat, repeat.

I need to go ‘somewhere’ and regroup. Be still, think and refill my ‘fighter tanks.’ That would be the Black Canyon. I’ll get off the beaten path and sit and look at the awesome surroundings. I will do the best I can.. the rest is up to bigger sources.

Yesterday, my Sydney came and worked in the wild looking yard. She also took me to Dispensary as I needed more Hash oil for this pain in my pelvis and couldn’t drive. (What’s that all about?) Peggie brought me some fruit and other goodies. My Teal sisters surround me with their love and support as do the ‘German Girls’ and my FB friends. Huge support and I am so very grateful.

Not so nice changes

Posted on July 24, 2013 by admin

After I have had such a nice week off chemo and doing what I like best, I had to return to my 6th cycle of chemo. To ordinary folks that means 18 of those cocktails. That day was uneventful, aside the toxins.

I woke up 2 nights later to use the bathroom. I usually go in the dark, since I know my way so well. This time, I felt strange and thought it was my eyesight and the dark. I turned the light on and the whole room was spinning. Like a BAD drunk. But, I had to go and bumped against the wall and could barely get there. Back in bed, it continued. I tried placing my foot on the floor and sat up but this got worse. Little, black spot, cold and clammy and I thought I’d pass out.

Was getting anxious and freaking out a bit. Who do you call, at this ungodly hour? It was 1:00 o’ clock. Went mentally through the list of my friends, who had assured me that I could call ANYTIME but they all lived a distance away and I thought I needed someone fast.

So. I called my nice neighbor, Nancy. Asked her if she would come over. She was here fast, in nightgown. Sat on the other side of the bed and rubbed my back . I was getting nauseous as well but took some hash oil and that worked in a few, miracilous minutes. At least no vomiting the bed.

She asked, ‘what do you want to do? ‘ I said, I didn’t know but we could call Doc’s office here and night operator would know how to get ahold of one.

Luckily, my old doc was on night shift and therefor I did not have to explain all the way back to Adam and Eve. Although, he said, he could not determine over the phone what this episode was. I should come to ER. This ‘could be Vertigo’ OR this ‘could be a tumor on my brain!!’ Great choices in the middle of the night to be told! ( I tallied up the several thousands of dollars this would cost.) I said, NO, I think I’ll wait till morning and come in. If I pass out, my neighbors will drag me to ER.

Nancy stayed with me all night. I told her to try to get some sleep, I would wake her if something happens. The hash oil put me to sleep as well. Woke early and though I was still dizzy, it was not as much. At 8:00 A.M I got a call from doc’s office with appointment.

I went (different doc) and they took Vitals (bloodpressure, pulse and finger stick to see how blood thinners work. He had no clue as to what to contribute this episode to. “Probably from chemo’, he said and that was that.

I hung around on my couch pretty much all day. Was listless, fatigued and still off kilter. Tried to figure out, as so many times, what could have happened and why? Well, I don’t have the answer either.

Went on with my business. Tried to clean house a bit, had to go shopping, cook something. Every time I go to the store, prices have gone up. A few tomatos are $3.99 (Do they really think that one cent difference to $4.00, makes us buy with joy??)

Cameron came Monday eve to take me to chemo Tuesday. I was a bit anxious as CA 125 blood test was on the plan. (To measure cancer marker.) I packed my ‘chemo bag with bottled water, a few yoghurts and cherries and 2 pieces of coffee cake. I can’t leave to eat and I can’t eat what they offer. Salad and an awful potatoe bisque.

I was kidding with receptionis as I had not received the usual ‘reminder to come’ call. I said, Chris didn’t call but I came anyway. They said laughing, they were happy to see me. Lab tech came and we filled 4 vials of blood. (I’m thinking, each week that much, wonder what to eat/drink to replendish? Beets came to mind.)

Then visit with Oncologist and retelling of episode. She also thinks, it’s an accumulative effect of the chemo. I said, I think I reached my tether with chemo and I hopefully could stop and CA 125 would be in normal range! She said, will you kill me if it isn’t? I said NO, that’s against the law and I want to go to Europe NOT jail.

Then we went to the infusion room and hooked up for my cocktails. Cameron went outside to work and calls.

After a little while I saw Oncologist come in and holding a piece of paper. I looked at her and said, YES? what is it? She shook her head slightly and for a second a cold hand twisted my heart. IT WENT UP!! I felt a little betrayed by my body! Ok. Ok. I said, 8 points is not that much. We all know that this is not an exact science and other factors could have contributed. Change in diet, which has me upset since all the ‘healthful foods are almost off the table. Because of the vitamin K and blood clotting factor. Also, taking Warfarin. I’m disappoined but this will not change my plans. Instead of waiting to the end of chemo (which we anticipated by having a good number) to have a CT scan to see what the tumor is doing, she scheduled a CT scan right away and as soon as they call with appointment, I’ll have that to contend with.

Cameron came back in and saw the expression on my face. He hugged me and said, this is just a temporary, little set back. We’ll do this too.

I had sent a message to my support group, my TEAL sisters and immediately the comments and loving support poured in as was the same with my FB friends. Nothing from some family members but it seems they have a different priority.

My good friend Bonnie came with food. We had decided on a baked potatoe with all the trimmings, since this is what I’m allowed to eat. Had a good visit and talked this new thing over. It’s so good to have good friends.

I have decided to regroup and circle the waggons. I will renew my efforts and eat as closely healthy as I can. I KNOW this makes a difference. I have proven it before. This is just a little ‘hiccup’. I have 4 weeks before the next CA 125 and hopefully can walk as leg and foot feel better. Some may think that this sounds like ‘Denial’ but I asure you, it’s not. Coincidentally, I saw a man on T.V. who said, YOU CAN DO ANYTHING THAT YOU PUT YOUR MIND TO’ , as he levitated several feet off the ground. The MIND is more powerful than anything. We just have to learn to harness more of it. “You can think yourself well and you can think yourself sick.” I will do what I can.

Hot days and cool cooking

Posted on July 8, 2013 by admin

The continued heat makes everything harder to do. There is a certain inertia, when you step outside and a hot slap assaults your face. No rain since May. I am going walking early in the morning while it’s cooler.

Last Tuesday, was chemo day and a friend drove me to Grand Junction, so Cameron can have some days ‘off’. I was so sure, that the scheduling nurse had made a mistake, I called her over to ask what happened to July 9th? I didn’t want to get it all confused and somehow miss having a chemo. She and another nurse checked and it was my ‘chemo brain’ that had lost an entire visit there.

While I was waiting in the lobby of the cancer center to sign in, a woman spoke to me. ‘Excuse me,’ she said, ‘where did you get that shirt?’ At first, I was bit puzzled because this is an old shirt, white with two colorful parrots painted onto the right front. ‘Oh, my niece painted them a long time ago. She’s very talented’, I said smiling.

She really liked that shirt. A man was sitting across from her and a younger one opposite. She asked me, what I was doing there? Waiting on someone? I told her, no, I’m waiting on chemo. She said, you are too cheerful to have chemo. Ohhh, I said, ‘not always.’ But, I can decide, each time with which degree of fear, dislike, etc. I approach this treatment. I then told her of the lifestyle changes I had made. I told them about walking the Camino de Santiago. I really had their attention then. She told me, that her husband also was just diagnosed with colon cancer.They were there to find out all the hard stuff. Stage, treatment, possible surgery, etc. They looked like they been hit. Which, of course they were.

Before too long, they were called to their oncologist’s appointment. I quickly tore a bank deposit slip (had my adress, phone number on it) and told them, that if I could help in any way, to call.

Meanwhile, it was the 4th of July celebration, which I was invited, first by the neighbors and then later that afternoon, at a friend’s house. Ate hot dogs, a burger, beans, and 6 salad leaves (because of the Vitamin K thing.) Then, they talked me into a slice of home made apple pie. At first, I was steadfast and said, ‘no thanks, I think I quit while I’m ahead.’ Well, that didn’t last long when I heard all these happy sighs. So, I did eat a slice… with whipped cream and a dollop of ice cream. My Goodness. Nausea hit like a well aimed arrow and I ran for the bathroom. Luckily, I had my hash oil pen and immmediately took some deep puffs. After a few, I coud feel the nausea receding. Just like someone threw a soft blanket over it. A little shaky but otherwise restored, I went back to the kitchen. I tell you for sure… Pure Magic’. I was upset with myself for eating like that. I had not had a hot dog in over three years. I had not eaten as much in long time.’ If you dance, you got to pay the Piper’.

Yesteray, I was invited to a concert, given by a very talented Bob Milner. Plays some ‘mean’ piano tunes. From Blues, to rag time to Boogie-Woogie. Had us snap fingers and tap toes. Nice break in an otherwise boring Sunday.

Came home and sat back with a good movie, when the phone rang it was the son of the people I’d met at the cancer center. He told me, that theye were now ready to change lifestyle and would I consider coming to Grand Junction and show them how to do this. Of course, I said, I would be delighted. (Of course, they will pay me.) He told me, that his parents (as well as he) really liked my positive outlook inspite of the C world. His father could really benefit to be around me, especially since this was my 2nd time around, dancing with the ’emperor of all maladies’. I told him that having cancer was not automatically a death sentence. It is a definite change in ones life but we have a choice how to react.

We decided on Saturday. Sure hope my car will not be expensive to fix as I first, drive to Telluride to visit and bring (frozen) dinners to Cameron and hopefully go up into the mountains and see those awesome wild flowers. ( I really want to see Cameron singing Karaoke.)

I am thrilled to be able to ‘cook’ and teach about healthier lifestyle, so at least bump up the Immune system to have a fighting chance.

I am still struggling on finding something to eat which does not throw off the ‘Cumadin’ blood thinning med. Can’t eat too many greens. Can’t eat too much fruit which contains K. I never even thought about ‘K’ and now it absolutely controls my life.

I am excited to design menus for my new friends. I love having a ‘purpose’. And, just in time, my leg feels much better to where I can stand, walk for more than 30 min. Life is good.

CA -125 Ovarian cancer blood test

Posted on June 26, 2013 by admin

Last week, was my OFF chemo week. I felt somewhat like I was playing ‘hookie’. I felt pretty darn good, well except for the bum leg but even that one is improving. For the first time, in many months (nearly a year) I walked 25 min. I had my old camino poles and set out for a few blocks because I was ‘lazy’ and then I rememberd how, only a short few weeks ago I had to lay on that couch, not being able to walk at all and I pushed myself onward. Ended up going longer. I was pretty proud of myself.

I visited friends and did some ‘normal’ stuff. I went to second hand shops to find a lamp and night stand for Cameron. I cooked and baked. A friend of mine had a yard sale and I put some things in it but hardly anyone came. I think, she sold a few of my books. Not enough to help with costs.

A lovely surprise was the visit of my long time friends Garwen and Garci. Have not seen them in several years. Had a nice few hours. Always too short but better than nothing.

Also trying to stay cool as temps are up in the 90’s and the daily hot, strong winds are a great fire danger. Very low humidity makes a tough job for forefighters in Eastern Colorado and trying to contain the “Black Forest Fire.”

As the day to another cycle of chemo came closer, I also became more anxious as I also had a CA -125 scheduled. This is a tumor marker and stands for : Cancer Antigen, which is measuring the protein in a cancer cell to determine how much is floating around. This test is NOT an exact science and it has its faults but it’s the only one we have. Different cancers have different numbers. Beast cancer has CA-138.

My whole system had just returned to normal. Everything was working well. But… I had to go back on Tuesday. Cameron came from Telluride, Monday eve and we took off at 8:00 A.M for that 1.5 hr drive. At 9:00 A.M it was already 90F. Another hot, dry day.

I had baked a dozen Muffin shaped, little white-chocolate-raspberry cheese cakes for Oncologist and nursing staff. They said, it was more than delicious.

I put the Lidocaine cream on about 1 hr before we got there so it can really numb my port entry. Most cancer people are not that worried about chemo, since it does not hurt going in (side effects later) but the needles going into port causes anxiety. My blood pressure, which is a nice 120/78 most of the time, went to 147/94. Anticipation. Even though outwardly, not even I can tell.

I requested that they would call me as soon as they had the result as last time it took several days of nail biting worry and phone calls before I found out it was 116. Not as bad as some but not as great.

As I sat in the Lazy boy lounger attached to the IV’s, the nurse came and handed me the result. (Oncologist had rushed it through). She also came by my station with a big grin. We had made a little bet. She had said, it’s probably around 50 and I had said 45 (well, a little more hope.)It was a LOVELY, lovely 59. Normal range is 0-35. Next time, next month there will be another one and GOD, let it be 30! or, lower. There is an end in sight. Later on we will also have a CT scan (racking up those test costs) to see what the tumor is doing. I am envisioning that it’s dried up, shriveled and useless, even to the ’emperor’, hanging by a tiny thread.

I also asked Dr. M. to check on CT scan picture to see if there’s anythting left of the small lung tumors, which I had called ‘seedlings’. None there as far as she could determine. Ohh, a pocket full of miracles.

So. This morning, I have to go for a little finger prick to check on slow moving blood. Professionally, it’s known under: prothrombin time test, PIT for short. It is reported as an International Normalized Ration (INR). Hopefully, this too has improved and the blood clot is disappearing.

I have also ordered a ‘Cumadin cook book’. It’s annoying having to consult the Internet each time I want to prepare food, to see how much ‘K’ Vitamin is in stuff. All these numbers, what a crap shoot.

I am not complaining at all. This gives me renewed energy and hope and strength to think, that this is NEARLY over. Only a few more months before I want to go to Europe. Use up my frequent flyer miles and staying with relatives and friends. I could not afford this any other way. I will have to go to a medical facility to have my port ‘flushed’. It’ll have to be in there for several more month, just to be sure. I am not sure if I’ll have it removed, which would be another invasive surgery and then the worry, “What if IT comes back?” Then I would have to go through all that again. I would have to have it flushed once a month though. I’ve had 10 years of remission ( very rare with ovarian cnacer) but also know that each time there is a recurrance, time is getting shorter in between. But, I’m not thinking about that. I’ll have at least another 10 years.

I am very grateful again. Not getting caught up with superficial stuff. Thanking my friends, who go through the hard stuff with me, as well as Cameron. Never complaining as he drives 6 hrs round trip.

Also, my support group ‘Teal Warriors.’ A fine group of ladies with some bad, crappy cancers and side effects, many far worse than mine. We lost a dear ‘sister’ a couple of weeks ago. They are there when I want to whine and complain because I KNOW they understand. That’s one place we can unload, ask questions, get great, joyful Hurrah’s when tests go better and each tiny improvement is celebrated. Thank you, dear sisters.

Eyebrow….wigs?

Posted on June 14, 2013 by admin

The other day, my friend Bonnie came for her weekly visit and to either take me out to dinner, or picking up something.

This time, I felt well enough to go out. After ordering our dinner, we talked about ‘everything’. She asked me why I had not posted anything. I looked at her, a bit puzzled and replied ‘because nothing is happening and I don’t want to just whine what I can’t do, or used to do, etc. Well, she said, people don’t know that and they are worried when they don’t hear from you. When you suddenly stop.

I was properly chagrined. So, I apologize. But, I do have ‘sort of an excuse’. Chemo is messing with my brain. My memory is faulty. I have a hard time thinking of the word of the moment. In one sentence in can happen that I’m searching, or my brain searches for several words. I feel like we’re playing charades. (Just a moment ago I had to look up ‘apologize’. Couldn’t remember if it’s one ‘p’ or two. I have learned to be patient (most of the time) with myself. I was wondering aloud, to Bonnie, if there would be someone to invent ‘eye brow wigs’? We have false lashes and mustaches and hair but nothing for brows. Mine are all gone. I try to pencil them in but am not good at it. Oh, let me tell you what had happend 11 years ago, when I had now brows either, (from chemo.) After I had had my last chemo, a couple of weeks later I visited Cameron in Portland, (OR).

I was still bald as well. Put on my hair and my make up. The bathroom lighting was not the best, so I did most of it by memory.

Then, cheerfully went shopping. I noticed that people were really looking at me. After awhile, when this kept on happening, I worried that I may have something on my nose, teeth, etc. So, I went to the rest room and looked into the mirror. Ahhh! I had grabbed the wrong color pencil and instead of brown, a bright blue. Really noticeable.

My birthday was absolutely wonderful. I’ve received so many (paper) cards and flowers, books and chocolates and a French coffee press. Then phone calls from Hungary, Switzerland, Germany and a few states in U.S. Lots of Facebook birthday comments and pictures. I felt truly special.

My friend Peggie and husband took me to a Puerto Rican restaurant for lunch where I had a great ‘fish ceviche’.

Cameron’s aunt Jayne came from Rangely and we packed up food and other important stuff to take to Telluride and visit Cameron and be spectators for the grand balloon festival. Cameron had asked us to bring his bike, which had wintered in my cellar. Jayne has a big pick up and we could haul just about anything. I went to the cellar and saw the he had chained and locked the bike around some pipes. I texted and asked for the combination. He send three. None of them worked. Jayne tried, the neighbor tried. Nothing. Could not unlock that bike. I saw in my minds eye, the bike would be there, still in 150 years, chained to the furnace.

Jayne remembered that she had bolt cutters. So, this was brought down. It totally cut through the rubbery part and exposed 4 shiny, thin cables. I tried, she tried and the neighbor tried. Nothing. That is one good lock! Wondered how they steal bikes so easily when we couldn’t get one milimeter out of it.

I researched ‘how to unlock cable chains.’ Most of the websites suggested to go to a bike shop.

Meanwhile we took off and drove to Telluride. A most beautiful day. The majestic views of the mountains, still capped with snow, the blue, blue sky, then the greening trees and meadows. Never gets boring.

I cooked lunch, which I had prepared ahead of time and only needed to reheat. Then, out on the town. Gosh, Mercy! That altitude had me huffing and puffing. ( It’s over 8000 feet)My leg hurt but I wasn’t about to stay inside. We went to see the beautiful library. Since we had time before the balloons, I asked if we could go to ‘La Marmot’. A long established Restaurant. A bit pricey (like so many things in Telluride) but I had always wanted to go. Cameron said, sure, let’s do that, since it was my birthday present.

I had ordered French Onion soup and a Goat cheese and caramelized onion Tart. Cameron had the Squash soup. The tables had white linen, beautifully folded napkins, sparkling glasses, flowers and the ambiance was nice. The waiter gracious and polite.

When the soup came, in a small bowl ($12.00) I didn’t recognize it. I got the waiters attention and asked ‘Is this a classic French onion soup?’ He pointed out that it had stated Creamed’ on the menu. Well, I guess my eyes just ran over that word without recognizing it. In the middle of the ‘cream ‘ soup was a small ball of melted cheese.

Cameron asked me to try his soup. It was bland. Oh! I said, how disappointing. He asked me what I would put in to perk it up. I said, well, a bit of nutmeg, cinnamon and Sea salt. (Starting with a good stock). My soup was bland as well with just a ‘hint’ of caramelized onions. Every seasoning had galloped past the Goat cheese tart. I have no idea how much Cameron paid for the whole thing. We don’t mind paying for food that is GOOD. I don’t have to have that again, any time soon. (I’ll cook it at home.)

After we came home and Jayne went on, I went to the bike shop. I told the owner our problem and he offered to bring his bolt cutters. I told him, we already tried that but he said, HIS bolt cutters were the best. Asked me to come back the next day. I did. He forgot to bring them. He said he would go home at noon and get them and call me. He never did and I was tired seeing his face.

After Peggie and husband brought me back home, he had brought his bolt cutters. Down we went. The first couple of trying did not produce results. Then, oh, brilliant idea!!! He cut through the ‘plastic’ tumbler part and VOILA!! The bike was liberated.

Last week was my ‘chemo OFF week.’ I was treating my immune system especially well with juicing and eating spinach, etc. Well, the spinach was not a good ida. It has too much vitamin ‘K’ and slowed blood flow more. I MISS my greens but can’t have them right now. Not going to whine about other side effect of chemo. Next week, back for more. (My 4th cycle) Each cycle is 3 chemo’s. (That’s $15.000 each month for only that.) On June 25th, thorough check, lab and CA 125. That’s the one I am really curious about. The ‘cancer marker’ blood test. Asking for good thoughts and a couple of prayers that the numbers have gone down. I am soooo ready to stop chemo.

My hair, inspite of the toxins, wants to grow. I look like I have baby-chick-down. This had better not be permanent.

O.K. Enough rambling. Just so my friends know that I am still kicking.

Door Number 1-2 or 3?

Posted on May 26, 2013 by admin

A few years ago, there was a T.V show with that title. Contestants would go through a series of differnt question they had to answer correctly and then they got the choice of the 3-curtained doors. Two had nice and sometimes valuable prizes, one of them a ‘boobie’ prize. A bale of hay, or a pile bricks.

I feel like I got one of those doors.

Two weeks ago, I had a CT scan to determine how well (or not) chemo therapy was doing and, what change, if any, about the ‘tumor.’ As many scans as I have had, this result was very much anticipated.

Lab person was going to use my port to access veine for dye. Not sure what happened but the pain and burning sensation was so severe, that I yelled and came off that chair. Startled, nurse pulled it out quickly. To allow her to do this again took great effort.

My friends and I went to have lunch down town and theybought bought this delicious Gelato for me to minimize ordeal.

After I got home, I waited for the call which would give me results. There was Tuesday evening, Wednesday, Thursday. Nothing. Friday I called Oncologist’s office only to find out she had left.

Then, I called local doc. I knew they also would get a copy. Left message. Then I went grocery shopping. Walking is still an effort. Although swelling has receded, there are places which are painful and I have to wear compression hose, which go up to the thigh. After walking some, they roll over and then there’s a big, red indentation and I constantly have to pull it up. Annoying. I need one of those stocking holders. As I drove home, my cell phone rang and it was the nurse from local doc. She said, they were looking at scan and that blood clot had not dissipated. Was still there and in precarious place. I needed to go to Hospital as soon as I could and have another Ultra sound. I was really confused why they would see the ‘clot’? She said, that scan reaches a larger area.

So. Went to hospital and got scan. Waited till they send it to doc before I was allowed to leave. He did tell me that tumor had receded. But not how much, or anything else, since this was not his expertise. Waiting some more.

Tuesday, chemo day and appointment with Oncologist. So. This is the good news. Tumor has shrunk from 5 cm to 2.2. Doing the happy dance for that. Now I am hoping, that these 2.2 cm will be gone in another 2 month. Then she says, that blood clot did not originate in the leg but in the abdomen. It was very unsusual that the clot would travel DOWN instead of UP. Which would’ve been very dangerous. I totally believe, that I had my little miracle. My blood tests, which I have to have prior to each chemo is ‘perfect’. (I asked what I was doing there if everything is so perfect!!)

The down side is, that the chemo is destroying my veines. There’s the catch. I can’t stop chemo now but for the veine, it’s a horrid thing. Which door to choose??

After so many rounds, the effects from the chemo are felt more and more . Most of the time I am very fatigued and can’t catch up with house and yard work. For 2-3 days, bones hurt and I am freezing form the inside out. Depression is marching in as though it belonged. Watching a commercial the other day, I started crying although there was nothing about it to cause this. At the store, suddenly there are tears. My nose is dripping constantly, until we figured out it’s because I have no ‘nose hair’. No eye brows, lashes … nose hair. Now that it is getting warmer, the pretty wig feels like a fur cap. My memory is becoming faulty and this what we call ‘chemo brain’.

Bills are piling up and that one night stay at the Hospital cost a whopping $6800.00 and of this $1,133.00 which I have to pay fully. I am feeling overwhelmed. It shows that one cannot be allowed to get sick in the ‘Golden U.S.A.’ I’ve not opened the bills from St. Mary’s.

I have had wonderful and caring support. Some from people I have never met. (I received a $25.00 donation from a ‘Stranger’. I was so very touched.) I get uplifting and caring posts nearly every day from a new and precious friend ‘Michele M.” Two days ago, I had a particular hard time, when a beautiful sun flower appeared on my Facebook wall. This helped more than any pill I could have taken.

I also got to drive to Telluride to visit my son. A dear friend drove as she was certain, this may be too much for me, to start. (She was right). A most beautiful, perfect day and drive. His new apartment is gorgeous and roomy. I had prepared lunch to take up. (Hungarian Gulash, Spaetzle, cucumber-tomatoe salad and fresh strawberries for dessert. We drove to the end of town to see the many waterfalls. Azure sky and awesome surrounding. Good to breath and be out of this house. It was slow going as the altitude was making walking more labored but I did walk from mid town to the apartment. Small victories.

In a few days, it’ll be my birthday. I am totally grateful that I get to be here and celebrate, although this will be the first time in many years, that I won’t (can’t) host a party.

I still try to reconcile the actual number of my years with my internal years. Where have the last 20 years gone??

‘Lawd… Lawd have Mercy’.

Posted on May 3, 2013 by admin

Before anyone thinks I am making fun, that’s not so. This came to me the other day when I was still hugging the couch.

It was a long time ago, when I first arrived in Long Island, N.Y. as a nanny. After I was there a few months my aunt and uncle came from Munich to visit and we took off to see New York.

It was a hot, sweltering July day. I believe it may have been the 4th because I remember a long Parade with music, drums and everything. When it was over, the people dispersed and we were thirsty and started to look for a diner or Cafe. Not knowing the area and had no map, we got lost.

We ended up in a very different neighborhood. Not another white person. We were watched and looked at but had no idea why. No one bothered us though.

We came upon a building with multi-colored windows. From inside we could hear a Tamborine and singing. I thought it was a bar. We stepped inside. Right away I noticed that this was not a bar but a church. Filled with Black people. Dressed in their absolute best. Hats, gloves and pretty dresses, the men in somber dark suits. We just stood there, not knowing what to do. The Pastor was saying that someone should start giving ‘Testimony’. My English was still in its infancy, so I was not sure what that meant. Suddenly, a lady got up and started shouting’ :Lawd, Lawd have Mercy!’ She was looking toward the ceiling and lifted her arms, while repeating. (I thought she said ‘Lard’ and couldn’t understand why someone would shout to heaven, to get it.)

My aunt and uncle who spoke no English asked me where we were. Before I could answer, the Pastor waved me forward and greeted us nicely. Asked where we were from and how we found our way to their church. I told him that we were glad to be there. The congregation gathered around us, talking and smiling and being very friendly. When the service was over, the Pastor walked with us to the edge of Central Park and pointed us to the right direction. We did stop at a diner and had a Cola. We had got lost in Harlem, in the 60’s. It was for us a very nice experience. I still smile when I think of the ‘Lawd’ and hope whatever that Lady wanted, she got.

When I started walking, with the bum leg painful and heavy, I too said ‘Lawd have mercy’.

I couldn’t write anything for awhile as a horrible tragedy happened to a very good, dear friend of ours. Just a few days before his wedding, his Fiance’was murdered by her sick and violent ex-husband. Shot in front of her teenage daughter, in broad daylight, in the parking lot of the dressmaker where they had gone to try on her dress. (He too was shot by Police after he opened fire.)

I was stunned and cannot imagine the grief and sadness over such a senseless act. Instead of the wedding, there was then a funeral. Anything I had to say about my problems, paled immensly in light of so much pain. I was supposed to be there for the wedding and had so looked foreward to a visit and to get to know this beautiful, vibrant lady that our friend had chosen for the ONE in his life. Due to the Thrombosis, I couldn’t go. My son had flown to be ‘best man at the wedding. What does one say? What words can possibly be used? What sense can make someone out of this hellish act? So many people who will miss her. The mom, the daughter, the aunt, the good friend to so many. I’ve cried for days. For her, her daughters, her family and our good friend. From the very beginning when he told me about her, I loved her name– ‘VIOLETA.

For the last few days, the leg has improved. I am doing ‘baby-steps’. I can now walk 3 blocks. In between, I had chemo. The blood test shows that the numbers are down. I am grateful. In 2 weeks I will have a CT scan to check on tumor. I envision that it is ‘dried up’ hanging by a thread, and I can stop having chemo.

Meanwhile, life goes on and my beautiful granddaughter is now 22. My daughter will have a birthday soon and then, it’s my turn. So much has happened in that year. And, we are molded once again by all the happenings in the tapestry that is Life.

Couchsurfing…

Posted on April 17, 2013 by admin

‘Couchsurfing’ – Travel the world- explore your city and host new friends. Couchsurfing is the world’s largest travel community.

Well now. My couchsurfing has been everything BUT that. I am counting now 16 days, on this rust-terra cotta colored couch. It’s a nice one really. It has big, fluffy back cushions and seats are comfortable. It also sports a Queen size bed. The fabric is micro-suede. Easy to clean, should there be spots.

My day starts early in the morning, since this is when I wake up (thank God.) I take my Levothyroxin and read another 20 minutes so the pill can work. Then, I go and brew my ONE cup of coffee. It’s nearly a ritual. NO automatic drip pot for me. I boil my water, add 3 scoops of (German mild, non acidic) coffee, a few salt crystals and a ‘breath’ of cocoa. I heat my cup, so the coffee won’t be luke warm when it hits the cup. Just a dash of half and half. That first swallow is sooo good.

See? How much my life has shrunk? Not much happening when you lay on the couch. I bought a big pillow to rest my leg on, which is encased in Ted-hose. Those white stocking that prevent new blood clots from forming.

I can’t stand long, well, not even short time. So, most mornings, I eat Oatmeal or cereal with coconut milk. I try to get dressed, which is not easy to lift that leg to fit into pants. It still seems to weigh 50 lbs. It is still swollen and very tight, and that is the source of the pain.

Now, that I spend those first few minutes on whining, I will also talk about the good things happening. My friends come with food. (I’ve eaten more Kentucky fried chicken the last two weeks, than I have the last 10 years!) But, that’s what my chemo brain wants.

I get home made chicken, potatoe and other soups. I had my favorite Mike come, with family and bring ribs. (Do you all remember that I had NOT eaten meat in nearly 3 years??) Right now, it’s all by the way side. No juicing. Not many salads nor veggies. Chemo has changed my taste buds and I have very little appetite. I still have to have MJ vapors to get ‘hungry’.

I watch T.V. and can’t believe all that mindless crap that’s on. I have read and re-read books. My family calls from Germany and friends and relatives call, so that takes up some time. I watch German T.V. which is some better because it’s not all about killing, blowing up stuff, etc. Sometimes, I wish people had a little more time to spend with me. Like, the length of a movie. But, I am grateful I have so much help and support. My friend Berle is a champion. She cooks and does the vaccuming like a little dynamo. She shops and puts it away and spends time. People do what they can. I am rich beyond measure. My friend Marie came while I was getting chemo and she cleaned house, put fresh, beautiful flowers on the tables and I was so touched and emotional when I came home. My friend Peggie made a late Spaghetti run because my taste buds wouldn’t accept other food.

I never did get Home Health because they don’t ‘help’ . They will give medication, help with bathing but not food or a little cleaning. I only take 1 pill and can bathe, so this is not for me, even though Medicare would pay 100%. But just because I CAN, I won’t squander resources. I thought, they would be the same as in Germany. My dad, brother, cousin all had Home Health and it’s a very efficient, good help with everything. A new, lovely friend is Michelle M. Lives and works in Saudi Arabia. Beautiful, eloquent and so tender hearted. My personal cheerleader.

I want to thank my other friends, who donated money to reduce some of the medical cost. It’s a bit humbling but I so appreciate it.

The other ones are my TEAL sisters. My Ovarian cancer support group. Great ladies. Each batteling her own, tough fight but they’re always there. Supportive. Non Judgmental.

No one has looked at my leg. They say, ‘just keep taking your Warfarin and we’ll see you in 2 weeks.’

I WAS going to go out but a short trip through the kitchen and looking out the window… I see SNOW!! Dang it. My apricot tree blossoms froze and we’re not sure about the other things I had planted last fall. This is a LONG, cold winter. I am ready to put my toes into some turquoise, mild ocean water. But, that will remain a Fantasy. Bills are coming by the droves and just to tell you: ONE chemo is nearly $5000.00 I have had 9 so far. This is why cancer won’t be ‘cured’ that fast. It is such a money maker.

Just reading this, shows what a boring life it is, right now. I only complained the first week and was very depressed. Mainly, because I did not know what the matter was and have never had anything like that. After that hard week, I decided that I would change my attitude as this would be more beneficial to my mental well being.

I fervently hope, that by next week I can walk. Just normal steps. Nothing huge. Sending out hugs and a heart full of gratitude.

Too close for comfort.

Posted on April 6, 2013 by admin

If this were not my life, I would believe someone made it up! What more can possibly happen?

It’s nearly two weeks ago, now, that when I went for chemo, we noticed my right leg being really swollen. All the way up to the groin and down to the toes. Immediately an Ultra Sound was ordered and performed to check on blood clots. I could hear the return ‘swooshing’ of the blood. NO obstruction, they said.

By the time I got home, it was worse and I was in a LOT of pain and could hardly lift that leg. I called twice on that Thursday, needing help and asking what to do?

They said, it was ‘probably’ lymphatic blockage and I needed to go have it ‘drained.’First, there was this thorough process of marking and measuring certain points, up and down the leg. By the time it reached the groin, we had 68cm. (Used to be almost my waist size.)

The massage felt rather pleasant and I was happy that finally something that didn’t hurt. Came home and was miserable.

I cannot move. Cannot walk. Two steps and I’m done for. The skin is so very tight that I’m afraid it may just crack open. I was to have another massage on Friday. Cameron took me there. When the Therapist saw the leg, which now sported a huge, red-hot area of 20″ inches, she became very concerned. Thought it might be cellulitis. (I thought that meant ‘fat-handles’.) Absolutely no massage. I was so worried and requested that this leg should be seen by a doctor. Easter was coming up and people go out of town and help may be scarce.

She called over to the E.R and then wheeled me over. They inserted an IV. (They did not access the port as that may bring a different problem.) My ‘old’ doc came and I sure was glad to see him. He just knows my whole history. They decided I should be admitted and stay for observation overnight. They were not sure whether this red area was an infection. The Ultra Sound showed at least 3 blood clots. What? Where do they come from? Well, that’s the $64,000 dollar question. Could be from chemo. Could be from the port. Could be from not being able to move a lot. Could be that when I stopped the Ibuprofen, the blood thickened? Well, just a guess. I feel ‘betrayed’. I was soo good to my body the last few years and this is how it pays me back? Childish outcry.

I felt so removed from reality. This is now my LIFE!! A leg that is the size of small tree. Luckily, cellulitis was ruled out. (Staff and hopsital were great.)

A friend, who is a retired nurse had agreed to stay with me, so I could have help. That fell through. Cameron had already left for Telluride. He has to find a new apartment since winter season is over. We were supposed to fly to New York for a dear friends’ wedding. Certainly I can’t go.

As I layed there, leg way up and in white TED hose, totally feeling sorry for myself, the thought came to me HOW VERY LUCKY I WAS! Yes. In all of that, I was so very close to disaster. IF she would have massaged the leg, the blood clots could’ve been set loose and traveled to lungs, heart, brain. BOOM!

Had I ignored all the little signs, at that point and went to Germany, this could have turned into a full blown disaster. So, even in all of that, I was protected. Now, all I want, is to just walk again. Do all of the mundane chores. I would LOVE to clean the toilet.

Friends have been a big, big help. Sending food and coming by. But, there are many hours in the day to fill. I have never been so ‘still’ in all of my life. Whole different reality. Having a problem adjusting to these blows, one after another. Back on pain pills. Of course, there’s MJ. My good buddy. Have very little appetite but this could be because I am not busy enough.

I had to give myself shots. Twice a day, in the abdomen. There were 8 shots in all. That cost? $611.00. There’s nothing generic or anything else. Either that or you could die! Also taking Warfarin to help thin the blood. It did come up from 1.1 to 2.8.

I think, somewhere along the lines, I lost a portion of my positivity and good humor. I am cranky and whiney. I am in pain and general discomfort. Now, I have to deal with constipation from the darn pain med. (I don’t know me like that either!!)

No breaks to catch…

Posted on March 25, 2013 by admin

I was finally on board with bald and cold head and all inclusions thereof. I was being strong and gracious (except a tiny fraction here and there).

Back in December, on one of my visits to Cameron in Telluride, I had noticed that my upper thighs seems to be really heavy. I thought, this was because I had not been able to excercise since the last two surgeries. I blamed the high altitude and steep incline to his apartment. When I was back home, it disappeared only to repeat this on my next visit.

I had mentioned it to Cameron because this puzzled me but did not give it more thought.

I was starting to feel better. The different pains in my abdomen were GONE. I thought ‘O.K. that’s one good point for chemo.’ Still awful stuff but hey, no pain. I could finally stop the 600 mg Ibuprofen. Felt great about that as at that point ALL I was taking was my daily Thyroid pill. No other meds.

After a couple of days, the pain in my thighs returned. Funny that. I walked a few steps, had to stop and rest before I was able to walk another few steps. What the heck?? I thought, it would ‘go away’. I thought, this is only temporary. No such luck. I could not walk much farther than half a block.

Now this really scared me. I had walked 500 miles only 18 mos ago and now couldn’t even walk around the block? I was stunned. What to do? What IS this new calamity? If I can’t walk, they may as well shoot me. No matter about the ‘hair’, no matter even about chemo. THIS was a real big, black shaky fear. My mind could not even go there. Ever since I was a child, I hardly ever ‘walked’ I ran, skipped, jogged. As an adult my strides were always longer and faster than the person next to me. (Except my son, who is always ahead. )

I could not think straight. My mind was crowded with terror. I remembered Doc’s urgent words when he had called me that Sunday. ‘ The tumor is pressing on the Aorta and can restrict blood flow to your legs. Once the damage is done, it cannot be reversed. You must have chemo and it must be soon’.

Was this that point of no return? Is this going to be my life? Had I brought this on by my own ‘stubborness’ NOT to have chemo sooner? Am I to blame for this? ‘Oh GOD. OH GOD.’

I had foot therapy and could barely do the exercises prior to being hooked to the machine.

Last week, I had had enough and called Oncologists office in Grand Junction. No live person to talk to, so I left a message. Nurse called back and I explained this in very careful words. I had told her that this was NOT due to chemo since I had this before I started. She passed the message to the oncologist and then called me back. Onc said ‘this is probably neuropathy, caused by chemo’. I frowned on that because it was opposite of what I told them. I had also asked to have a CT scan to see what the tumor was doing and if chemo was helping with anything. Too soon for CT scan, they said. Chemo had not had time to really work but we will do a CA 125 this Tuesday.

I could not find anything online that would give me an answer or, even a starting point. My legs hurt and I took a bath in Epsom salt. My veines were more pronounced and there were ‘blotches’ on my upper thighs. I think I need oxygen to my legs, is what I thought before I absolutely broke down and horrible keening bounced off the bathroom walls. I screamed and cried and thought I would lose it completely. Only a few times in my entire life had I felt like this.

So far down in despair. NO one near, no one here. Very alone and felt abandoned. ‘Always have to go through the hard stuff by myself’ , is what I thought at that point. Of course, that’s not really so. But then, I also have chemo brain and along with it, comes its faithful friend ‘depression’. There is absolutely no way to cut this tumor off and out. There is no way I can have radiation. There is NOTHING anyone can do. The perfect Storm.

I won’t be able to travel. I won’t be able to go walking, hiking in Austria when this cancer part over. I may never be able to leave this house. Those were my darkest and blackest thoughts. It seemed unbearable and I wished I would just die.

I also took a break from Facebook. Couldn’t deal with people’s petty, little problems. Talking about if they couldn’t find the perfect, water proof mascara, that this would RUIN their day. That was the last straw. I know that this is not their fault. They just do their lives. But, when one battles on so many fronts, this was just too much.

Other people just stay away. Don’t even visit or call. I am ‘pruning’ my frienship tree as well.

I sat on the couch, took some ‘puff’s of my vapor marijuana’ so I could just calm down. Had a fitful night.

I had an appointment with my Foot Therapist early in the morning. I ranted and complained about not knowing what ‘this’ was and what to do? Where to go?

He looked at me thoughtfully and said, ‘I think, I know what it is you have. Give me a few minutes to research’.

He came back with some medical research. ‘Here, he said, this is what you probably have.

ATYPICAL INTERMITTENT CLAUDICATION.

What? What? What the hell is that??

‘Claudication or limping . The Term is associated with the Roman Emperor Claudius, who was notably lame. As a medical term it refers to a cramplike pain in one or both legs, which developes on walking and may eventually cause a limp.

The usual cause of claudication is typically that theyhave to stop walking a set distance because of pain in the calves. After a short rest, they may be able to walk another few steps. This is called Intermittent Claudication.

A rarer cause is spinal stenosis (narrowing of the canal carrying the spinal cord, causing pressure on the nerve roots that pass into either leg.

My cause is different, that’s why it’s ‘atypical’ but the end effect is the same. With me, it’s the tumor that’s pressing on the aorta and restricting the bloo flow.

Oh, my goodness. That’s IT, I said. I was so relieved that ‘it’ had a name and a starting point for me to research and get help. He gave me some pills “Argenine Plus’, which is a cardiovascular aid. I looked at that little, brown bottle as if it were Manna itself.

I took 2 Pills that Friday without noticing anything but then, it was to soon.

Meanwhile, my best and childhood friend had flown in and what a rock she is. We met in Kindergarten, in Germany 60+ years ago and went through all the trials and tribulations good, bad and horrid times. No matter what, she’s always there. I was soo glad to see her.

Saturday morning we got ready to do some shopping and I stopped at the bank to get a few dollars. I came back out and as I approached the car, suddenly I noticed I was ‘running’!! My usual fast stride. Ohh, I cried out loud, ‘did you see me? Did you see me running?’ Tears yet again. Joyous ones. Once, the pills wear off, then it’s the same but in between, I can almost walk normal. So. I am hoping that with the next 2-3 chemo’s that sucker in there, is GONE!!

Then, finally the book which my son had ‘ghost written’ came out. That was a proud moment. ‘The Cat Whisperer’, by Mieshelle Nagelschneider My ex-daughter in law. A beautiful and great expert on cat behavior.

Next book? “Camino not Chemo.” Maybe not that title but our adventures. Cameron will unveil the new working title soon.

Tomorrow is chemo day. Friends are coming with me. My relief and new hope were so enormous, that I planned and had a wonderful Lunch for friends and my son on Sunday.

The worst nightmare in recent history is receding. THANK GOD!

Goldilocks no more.

Posted on March 17, 2013 by admin

As the days were bumping along and I was just about to catch my emotional equilibrium, there came the next surprise, courtesy of chemo.

Went to take shower and got my stuff ready and shampooed my hair, when I felt something weird and unsusual in my hand, as I wiped the soap out of my eys and looked, there it was. A whole big fist full of hair.

Now, of course I knew this was going to happen and I had told Cameron, that I would definitely lose my hair ( I remember saying that this would happen in 3 weeks and 20 minutes) but he had said, ‘you don’t know that. Maybe it’s different this time.’ Cancer people cling to every little lie. So. No matter what you tell yourself and how strong one deals with this, when hair loss happens, many say, it’s the toughest part of chemo. It’s tied in with the little girl brushing her dolls hair, her friends hair, the dog’s hair. It’s having good and bad hair days, when just a few strands look out of place. It can ruin the first good moments in the morning, when after gel and curls and spray, the outcome is not what people expect. So very much is tied up in hair, or the lack of it. The feminin thing. Guys always look good bald. Hair is overrated.

And so, I stood there with water running furiously, and sobbed. I felt very vulnerable, exposed and naked. Eye lashes will follow and brows as well. Well meaning people say, oh, it’ll grow back’ and they have so many new things now’. Others, who had cancer previously would say, Just embrace your baldness’. But, we must be allowed to moarn. It’s not business as usual. There’s no strength that lasts 24/7. No matter how old you get, you want your mother at this point. A pain that runs that deep that it goes all the way back to childhood and needing that comfort. (Besides, I already embraced it once, with grace.)

I had asked my Ovarian Cancer Support Group, what it was that they wished people would NOT say to them. Here, some of the comments. When you want pople to hear you and not for them to keep saying how strong you are. When people dismiss their feelings because they don’t like having to comfort. When they say, ohh, you look so good. Which is quite suspect because, how on earth did I look before this? They are also annoyed because they do not want to talk about cancer all the time. Or, that someone elses’ grandmother’s brother’s cousin had this cancer. They don’t want to hear every cancer story in the universe. Meanwhile we do stay strong because there’s not much else to be. Once in a while, you just want someone to take your hand and tell you, ‘it’ll be alright’.

Thank you, Sue for your warmth and wonderful comforting e-mail.

When I had sufficiently gathered myself, I thought I would like to walk to the Post Office. Had to return the wig, that my daughter chose because it was too narrow, too tight and the color did nothing for my face.

I was about a block and half, when the pain in my upper thighs was so severe and felt like they weigh 50 lbs each, that they just went out from under me and here I sat on the street. Forget the hair. THIS was serious. If I can’t walk, then we have a huge problem. Since it was right by my Beauty shop, I was helped and sat on their chair to collect myself but then it was just too much and a torrent of tears came unbidden.

I remember when I had the frog ‘Timothy’ in my throat while walking the camino at certain times. Here he was back. I just could not talk. My Beautician offered to do my mailing for me as well as re-do my wig from last time. I also found a few scarves/turbans. They sure got expensive. Up to $30.00 each. Everyone cashing in on cancer.

My neighbors saw me come back and came to check on me, since they had not seen me. No word was needed, they just enveloped me in a big hug and told me how much they cared.

My good friend Peggie came by to cheer me up and took me to a new wig shop. I didn’t even know we had one right on Main Street. I’d tried a few on and chose a blond one, that they all really liked on me. ( My daughter said, do NOT get blond.’ Sorry, Sweetie. There just isn’t anything else that looks decent.)

My friend Silke came to take me to foot therapy. This is called ‘Sympathetic Therapy’. I like that name and it really helps with neuropathy.

Yesterday, a gray and dismal day but here again, my friends show up. Peggie took me for a walk while we had ten minutes of sun and then, my favorite Mike came with wife Jodi and son. They brought chicken and we spend a few very nice hours. Thank you. This means a LOT.

I am alright now. Got over the hair-thing. Come Monday, I’ll call my Oncologist to find out what this weirdness is in my legs.

Then, I’ll find out how many chemo’s she thinks I should have.

After Chemo..

Posted on March 10, 2013 by admin

The cancer ward at St. Mary’s is a depressing place. Not one little, ol’ plant. No nice, soothing colors. Nothing to feast the eye on. There’s a row of Lazy-Boy chairs against the walls and that’s it. Nurse’s station in front. When I remarked on the bleakness of it, one Nurse said, that as soon as it’s nice, one could go outside. (What to do in winter months?)

Once we came home, I rested since it was somewhat tiring. I was a bit apprehensive waiting for the second day ‘boom’. I was on tenderhooks to see if this awful nausea would appear. I was given prescription and instructions how to take them. Compazine at bed time and Zofran in the morning. In between I would take some Marijuana as I’m always worried about side effects from pills. I only felt a small ‘tinge’ of nausea which disappeared later on.

It went pretty well, I must say. NOTHING like the first time, when they threw the whole chemo truck at me.

Friends came with soups and flowers and warm hugs. Took me for walks to get things moving. That is the challenge now. This awful constipation caused by chemo. By the time it’s finally working, then it’s time for the next chemo. I thought a bit ahead and took a softener and small laxative on the day of the 2nd chemo. I figured by the time it would shut down, I would be a little ahead. As well as eating Prunes. My Oncologist advised that I should drink warm prune juice, first thing in the morning. Well! I don’t think so. That is truly a horrible thing to do. My gag reflexes work very well on that one.

When Tuesday came for 2nd chemo, Cameron drove me to Grand Junction. Blood draw and waiting for Lab results before going in to be attached. This time, there were quite a few people there, a lot of them, men. Older and younger.

Cameron and I worked on the ‘Camino Book’ until I fell asleep. (He had ghost written a book with his ex-wife, which is now on Sale everywhere. ‘The Cat Whisperer’ by Mieshelle Nagelschneider. A truly fantastic book for any and all cat problems. Without Cameron though, this would have never taken place. Even though he was barely mentioned, we know of his contribution and efforts. )

Two days after chemo, there were the first signs of ‘side effects’. Almost nauseous. No appetite and tired. Joint pains and Neuropathy on my foot soles. Those are like electric currents of shooting pains. I am going to have treatments for that. There are pills and good creams but who can afford it? Medicare does not pay for that.

My dearest friend, since childhood (now, over 60 years of great friendship) called and told me she was coming to visit. I am soo happy. There’s nothing like a good, ol’ friend who knows you inside out and still likes you.

Friends ask me, what can I do for you? I am so very lucky and blessed by so many wonderful people in my life. My neighbor, Rob who comes to my aid, no matter what it would be. Small repairs and taking care of the garbage to the curb. My favorite Mike, who comes and checks on me, texts funny stuff and repairs bigger things but also giving me his friendship along with that of his wife and son. Then, a aprade of wonderful friends. My Bonnie, who comes like clock work each Tuesday, either to take me out or brings food and good cheer in.

Yesterday, my friend Monika came with good soup and a few grocery items, instead of flowers. (Thank you.)

When people are sick, there are a few things which would really perk them up. These are my suggestions and thoughts. A gift certificate for a pedicure, massage or Accupuncture. A few could get together and pitch in, that way it’s not so costly for one person. As I look around the house, even though it’s fairly clean, there are things left behind. Just don’t have the energy or I am near nausea and have to keep still so as not to invite it in. A gift certificate for house cleaning would be awesome. My friend Inge B. showed up yesterday with a Orchid plant, fresh, organic strawberries and a British movie.

This is a very expensive illness. Even with GOOD Insurance, which I don’t have. I am constantly stuggeling to make ends meet.

My friend Berle made an awesome Ginger veggie soup with chicken ‘meat balls’. My friend Lynne came with a very good carrot-ginger soup. My little buddy comes, just to be near and we watch companiable T.V. So far, so good. I have now 3 good days before next chemo and then I have 1 week off. I going to ask how many chemo’s my Onc has in mind. I would agree to six or eight but NOT 20!! It’s too soon to test the effectiveness, so I don’t know what the numbers are.

(I try to write with minimal mistakes/typos. But, I did notice that when ‘chemo brain’ happens, things get fuzzy and sometimes, I cannot recall a word or know how to spell it, whereas before, there was no problem. So, for those mistakes I appologize.)

I aslo want to thank the people who send uplifting e-mails and comments. Most of them, I have never met but you must know how much this is helping.

Port and Chemo

Posted on March 1, 2013 by admin

February 22nd was a cold and snowy day. My friend Lynne came to pick me up and drove to Grand Junction. I was extremely anxious. The whole idea about insertion of Port and then Chemo, was a hrash tig to swallow. During the ride I made liberal use of my MJ.

The day before my little buddy and Annika came to visit. Their mom had just told them about my situation. When I opened the door, I saw the solemn faces and the minute they came in, started to cry. I asked what was the matter and he said;” I am so sad’. I patted the couch beside me and told him to come sit. I actually put him on my lap and held him as he cried and being scared for me. I told him, that even though this was not what I had wanted or planned on, it would be alright. That I would do all I could to get well and he could help me.

I saw Annika sitting there, crying as well and I told her how I remembered the last time, when she was only 3 years old. She had asked me, if she could see my bald head. I said, sure and took my wig off. Ever so tenderly she touched my head and petted softly, saying “awww.’ Brought tears. She said, she remembers it too.

Blood pressure was still 159! I asked Nurse, who approached with IV, if she was any good with inserting the same. She said, ‘yes’. Well, she lied. It took her several tries and finally called someone else.

As we were waiting to be wheeled into OR, there came the ominous ‘Code Blue’ over speakers. Not something you want to hear before going in.

The surgeon came to talk with me and to explain procedure. Tears came unbidden and this Doctor said to me:’ We don’t force anyone to do this. If you don’t want to continue, then we’ll call Dr. M and tell her you want to stop.” Well, being chided was not what I would expect. Do they not teach compassion 101 anymore? But, I can imagine if you put people through like cattle, there’s not much left. I told him, that I’d only had 3 days to get used to this whole thing. It was also, the inevetability of it. That nothing would stop this now. That after 3 years of out running chemo, there it was.

The Twilight sleep was very nice. I did feel gentle pulling on my upper chest but no pain. Afterwards, I was starved and we went to lunch.

Next anticipation was the dreaded chemo. Cameron came Monday afternoon to take me next morning to GJ. I woke early, as usual and when I looked out the window, fat, thick snowflakes and everything white. Geez. What else? We had a white-out as well but got there very punctual.

One of my support group ladies had told me to have a cream (Lidocaine) prescribed, which goes on top of the port, so that way I would not even feel the ‘Poke’. Anything I can have and take and do to minimize the trauma, I will. (Got me a MJ refill and I used that a lot as well.)

Nurses in the chemo ward, were not sure about this protocol but I told them since it is NOT smoke, I would use it. The ward itself could use some nice paint and some greenery. Some pictures and ‘warmth’. Very generic and blah. Had some very nice and compassionate Volunteers. Ready to give you anything you’d want. Among a few documents I received a beautiful quilt. Sewn by Lutheran church ladies. I must send them a nice card. I was very touched.

Then it was time for all the ‘liquids’ to be hung. Saline, Carboplatin, Toxil. I worked very hard not to resist. For that chemo to come in and do it’s job. My Onc promised I would not get sick. She said, ‘I know you’ll be pleased how easy this will be, this time.” I assured her that I really wanted to believe.

We came home right after chemo. In the back of my mind, I was wondering if I can really go past the nausea which was soo very debilitating, the last time. I had prescriptions for anti nausea but 20 pills are $91.00 so I’d left them there. Cameron said, no, I’ll get them for you, in case you need them. Plus he bought all supersize Miralax and Softeners, etc. (That has been more miserable than anything else. To be in that situation again, after I’d just got everything to work normal.)

This morning, now 2 days after chemo, just a tiny bit nauseous but immediately took a pill.

Now, waiting for Tuesday and round two.

I do want to say a few words about the great social media, when it’s used to the good. I have so many, many people, most whom I’ve never met and don’t know personally, wishing me well, cheering me on and supportive with words and deeds.

Now, that the decision has been made, I’ll try not to whine or become a Prima Donna!

My daughter picked out two very nice wigs and I shall order those.

GOTCHA!!

Posted on February 21, 2013 by admin

After that little pondering session in my last post, I was still clueless about what might come, running over me like a dump truck.

I was waiting for the doctor to call with results but figured what with the weekend and then a holiday, it might be Tuesday before I would know.

Sunday, early afternoon, I was watching this great show on T.V. when the phone rang. Unsuspecting of anything, only mildly curious who it might be (I canceled caller ID since it’s over $10.00 a mos.), I heard a long-forgotten voice of my former local doctor. He asked pleasantly how I was doing. He’d given up Private Practise to work at the hospital, so I didn’t even know he was still involved but then, he been still listed as my Primary Physician and he got the results. He always works on weekends at the office, clearing things up.

He told me, he as looking at the result and it was NOT good. At this point, my breathing became shallow. He continued to say that the tumor had increased and pressing on that veine and it would cut off my blood supply to legs. Worse, the return of said blood supply would be near impossible and legs would fill with fluidds and that would be disastrous. My CA 125 blood test had risen to 159. Nearly 2.5 times higher than previous. Alright! He now had not only my attention, he had me scared to death. All I could think of was: I already booked a flight to Seattle and then a flight (with frequent flyer miles) to Germany.

He said I could not go because this tumor was creating big problems and I had new ‘spots’ on my lung and liver. He urged me to have chemo. He said that I would be fine, that a lot was different than last time. That I was in good shape and that my Immune system was great and I could live ‘forever’. (Now there’s a lie 🙂 I said I didn’t want to live forever but a little longer.

When we hung up, I was shaking and my brain was truly fuzzy. I nearly hyperventilated with fear of CHEMO! I called my son who told me he would come.

I cancelled my flights, barely being able to talk. I thought I was in a real dangerous place and my system kicked in with that ‘flight for life’ response. Only, I wanted to run away. (Yea. And then what??)

Cameron arrived and then called Oncologist’s answering service for her to give us a call back.

I called my family and told them I could not come after all. Set off this upsetting motion.

Mom listens to her oncologist, Dr. Melancon

Then everything went very fast. Hardly time to think. Met with the Oncologist Tuesday, early morning. When she came in, the first thing she said, was “Who scared you to death?”

Although things do need to be dealt with, she was NOT as dire as my local doctor made things out to be. I was really angry that I fell for this, in the end. He’s been trying to scare me into chemo for nearly 3 years and now, that’s where we are. But, for these reasons. The tumor on that vein does need to go. We can’t do any other localized treatment because there are a few spots and they need to be gotten at once. I do not want to have to worry about this on and on and on. She promised that this would be ‘gentler’. Funny, that. To use in the same sentence as ‘chemo’. We will do a lower dose of carboplatin and Toxil, same stuff I had last time. Once a week but for longer. I ‘may’ have constipation or diarrhea. I may be nauseated, I may get neuropathy (very painful) but all in all I will be fine! (In what way has chemo changed?? Sounds like the same horrible side effects I had!) Except this timeI have marijuana for the nausea. A few, little pills she had called in are $91.00. Pot is cheaper, better with no side effects. It is a NATURAL plant.

I had finally got the Diverticulosis under control where everything worked well. But, I do have pains in my lower back now, where tumor sits. So, I am now symptomatic. This bitter cup does not pass me by. I can’t be ignoring things just because I want it to be different. Could I have waited another few months? Possibly but then, perhaps would have had more unpleasantness to deal with.

Friends are gathering with their love and support, like a beautiful coat. My son will be

Carrie and Mom reunite for another camino, or path

here this time to help as well.

But look, I say. How many things I have done those last 3 years, while running away from chemo? Germany, Holland Venice. The following year, Camino de Santiago. Wow! Would have never done this except for cancer. Cameron says, there will be another camino now. The North Route. It’s just as long, perhaps even a little longer. But, I don’t have to do the whole thing.

I am calmer now that the decision is made. At the same time, I started to juice Marijuana leaves. Went to Dispensary and got me some fresh leaves. I washed them and juiced them with a little apple juice to sweeten the bitter taste. Only a couple of ounces. I would have needed 40 days for this treatment. There are lots of great testimonials about this.

I made a wholesome Lentil stew with Kale leaves. Then drank my juice. It was pleasant. The name not so much. This strain is called “Agent Orange’. Good thing I am not superstitious.

So family and friends, we have started a new journey. A detour I had not planned and am so reluctant to go. But, I can’t fight the chemo otherwise it’ll be that much harder to tolerate. Friday morning I will go to the hospital to have to port placed (in my chest.) They put you into a Twilight sleep, as they do with Colonoscopies. Tuesday then, is my first chemo.’

( It occurred to me, that maybe I need to change blog name? camino not chemo only fitted for 3 years.. Now, that I have to have it, what name can I choose?)

A most amazing gift…

Posted on January 12, 2013 by admin

Several weeks have past since I had anything to post. Various reasons. My health condition was the same and to whine about it seemed pointless. Epecially in the face of ‘Sandy’ and Newtown shooting. Compared to these horriffic disasters, I’d feel guilty posting something so trivial.

Christmas was a quiet affair. My daughter and grand children could not come and therefor I did not even decorate. Aside from one, tiny, fake tree in my living room, on the small corner table top. Cameron came from Telluride and we were invited to friend’s house on Christmas eve. I’d offered to cook. (Menu: Smoked Salmon roses with capers and lemon. Beet salad. Then, Champignon pork loin with bavarian bread dumplings and red cabbage in red wine. Chocolate Mousse with raspberry coulis for dessert. Hmmm. Good.) Nice conversation and cozy.

Just on cue, when we left it was snowing. Large, soft flakes. Lovely. Cameron was invited at a friend’s house in Telluride for Christmas dinner and so he left early that day. I went out to shovel snow. I went to my little buddy’s home for christmas dinner. His grandparents had come from Utah. Beautiful table setting and very nice dinner and talk.

I have often talked about my ‘little buddy’ but seldom about his older sister, Annika. The reason being, that in the past few years I’ve hardly seen her. School, extra curricular activities, friends and out of town sports made it nearly impossible to catch her. She’s very bright, excells in school subjects and sports… and gorgeous. I sure missed her but this is how it goes when they start to grow up.

After dinner, they both gave me a lovely, silver- heart necklace and I was touched.

As I got ready to leave, Annika came downstairs with a red folder, which she handed to me. I opened it a littleand just saw my name in fat, black lettering. I wasn’t quite sure what it said but I wanted to read it at home. So I did. And, became a total puddle. Even at the chance that this will make it a bit long, I want to share this extraordinary gift. I’d received a few, touching poignant cards, letters over the years form my family and grand children but this is the very best from a ‘non-relative’. (Except related by heart, as they say. And there it is:

“INGE”

Throughout my life I have been positively impacted by many people, non so much as my beloved Inge. She has been with me for nearly all my life, and without her, I wouldn’t be who I am today. She has inspired me persevere through the hardest of things, and to try my hardest to achieve my highest standards. She taught me the courage to stand up for my beliefs and opened my eyes to new experiences. Inge is caring, she is selfless and she is determined.

Some have to try to be caring, but for Inge it comes naturally. It is a cring so honest and sweet, as well as comforting and protecting. It is something only Inge is able to create. For my little brother and I she has been our base. She is someone that can always be relied on. When I went out to try something new, I could always count on her loving arms to be there for me if I stumbled along. I remember being sick; her caring hands spooning me tea and broth as she nursed me back to health. Even with her kids grown and gone she always had that motherly touch that I still hold so dearly. Inge was a huge part in my growing up. In a world where people fall unknown and lost she made me feel important. She made me feel as if I were part of something bigger than just Montrose.

Never in my entire life have I met a more determined person than Inge. She has endeavored the most horriffic misfortunes and every time she is able to pull through and remain the strong, beautiful woman I hold so dearly. She has overcome cancer and other health complications without giving up or losing sight of her goals. When Inge sets her mind to something, it is accomplished. No matter the difficulty of the task or the obstacles that are thrown at her along the way. Inge never fails to impress me. She is an inspiration to me, to my family, and all the citizens of Montrose who know her. Her endurance and determination are truly unique. No matter what it is, Inge will overcome.

To put everyone before yourself, to give what you have to others, and to be able to care about the needs of others even when your needs are far greater is something that very few people posses. This influence is selflessness and it is something that Inge displays every day. She cares about everyone, and no matter her condition she is always willing to lend a helping hand. Inge is a supportive, kind caring and non-selfish friend. She gives everything she has to make others happy. Amazing people like her are very hard to come by and I am so fortunaten to have her in my life.

I have grown up with Inge. She’s seen me learn to read, learn to play sports, learn to sing, and she has seen me growing up. She has always been by my side through all the ups and downs and I am eternally grateful for this. An anonymous person once stated, “To the world you might just be one person, but to one person you might just be the world.” Inge has been a huge part of my world ever since I can first remember. All my life I have wished to myself to grow up and be like Inge. I wished to grow up to be a strong, caring, determined, courageous, selfless woman just like Inge. She is my role model and a huge positive influence for me. I will always strive to be more like Inge”.

Can you imagine how I felt reading this? My heart beat like a drum. There is not enough gold, nor diamonds to compare in value. This is the BEST medicine I could ever have received. And, it humbles me, to be so large in a ‘child’s life. She used this as a school project. I know she got an A. But aside of being the focus of her story, it is wonderfully well written. I have been fortunate as well to be allowed in her (and brother’s) life, for 11 years now. She was 2 and a half when we met. Annika. You are my heart ‘child.’

Finally, Diagnosis.

Posted on November 13, 2012 by admin

As days went by, in October, I was just holding on to make appointment. After the 6 week wait, then finally the day to meet with Gastroenterologist. Nice doctor but no help. Expectation fizzled. We talked about health background and what he would suggest. Which was, to wait for Colonoscopy result and go from there. (Waited SIX weeks for that.)

I ‘almost’ looked forward to that procedure as it would give answers to a host of problems I did NOT want. i.e. colon cancer? (I’ve had some cancer cells on the sigmoid colon in 2001.)

On the day of procedure, I was, unaccountably weepy. I can only guess that I had had my fill of needles, hopsitals and mis-diagnosis. This journey to run down the source of maddening pain took its toll. Not only in misery but cost.

Nursing care was excellent and compassionate as they handed me kleenex and told me not to worry about having these emotions to begin with. Procedure itself was uneventful. (Had more problems with the ‘cleansing’ and drinking 64 oz of horrid stuff.)

Was just a bit groggy coming out of anesthesia and then dressed to go home. They gave me the discharge sheet and the nurse pointed to it and said:” Looks like you have some Diverticulosis.’ I said, WHAT? She pointed to the attached photos from internal colon and sure enough, here, for all the world to see, pockets!

After ALL that time and seeing primary doc twice and E.R. doc, etc. and YET they were all wrong. I just shook my head. But, finally had a diagnosis and a name. Once you know your enemy, you can map out a strategy. I started with renewed vigor to research and learn everything I could about this, very common disease. Which amazed me even more, that the medical PROFESSIONALS missed it. Each and every time, I recounted the symptoms. I was very precise in giving them the place, the pain, the feeling.

I started to eat differently, once again with the help of my German cookbook. YOU ARE WHAT YOU EAT. I re-read the book about cause and cure of Immune illness. I know that I have to go to the source of the illness, not mask it with pills and stuff. I’ve tried to impart this research and what I’ve learned with some friends but they are resistant. Rather go along with their disease than TRY something for only 2 mos. I don’t understand it. They must like where they are.

I had a lovely respit time in Telluride. The weather was gorgeous and invited to go for walks. But, since I still have bowel issues, I couldn’t go far. I have to map my walks according to bathroom availability. More difficult now since the Public restrooms are closed for winter.

Now, the next test that came up was my CA-125 cancer test. I had not had one in nearly 6 mos. Understandably I was anxious to see what that result would be. What with all the inflammations, infections and trauma my body went through since the surgeries. Stess too and all of that can very well change the outcome.

When I had not heard anything a few days later, I called and got the result. So, it is 62. (Normal range is 0-32). Last time, it was 68. When I had cancer in 2001, stage III the number was 29!!) So, not very reliable. Which means, yes, there is still cancer but it has NOT changed. Despite all of that, it’s still sitting still. What a glorious day and what a fine Thanksgiving this will be. I wish I could have all of my family here to celebrate. Will have this test every few months to keep taps on it.

I am so glad that doc was wrong again, when he kept saying: ‘It’s not Diverticulitis, it’s the CANCER!”

Hopefully, I get on top of things and can enjoy future days and travel. For a while I had nearly given up visions of travel because I could not imagine, going anywhere with that awful pain. Now, I hope to go to Austria, Germany, in Spring.( While I can before something else falls apart. )

Hope very much that I can now write about different and better things than boring pain and long journey to find cause.

Really grateful to my son, unwavering by my side. As is my daughter through concerned calls and her love. My granddaughter who writes beautiful, loving notes. My friends, who did not desert me when I whined and complained but took me out, or stayed in and brought food when pain was so bad I could not move. (You are a Gem, Bonnie.) And then, my favorite Mike who came and repaired things and visited with wife and son. Indeed grateful and lucky to have this extented family.

More E.R.- More questions

Posted on October 27, 2012 by admin

I know it’s been over a month since my last entry. I’ve had technical difficulties with log in etc. Writing this on my old, little lap top and hope it will hold on. The other reason was, that being in constant pain just does not translate into excitement to write, or sit. I was getting grouchy and irritable. ‘I’ve had enough’, I would yell.

Since last month, not much had changed healthwise. Constant pain and sliding into depression as I had seen Doc twice but no answers and no suggestions. Meanwhile, Cameron had decided to rent an apartment in beautiful Telluride. He had not ewanted to leave until we would know what was the matter with me. Not far from here but having his own space and different places to go and climb, write, meet and visit people. Also, to give me a place to come to and relax, having a bit of a respit from this nightmare.

First, there was another visit to the E.R. I was doubled over in pain but refused to take ‘Narcotics’ as the following constipation (even taking all sorts of help) was just as, if not more painful than the actual pain. ER doc respected my wishes not to give morphine (or others) and I received IV Ibuprofen which did help. Also had a CT scan. Upon reading the results he said, that there was NO sign of Diverticulitis!! Instead, his diagnosis was: Retro peritoneal Fibrosis. Huh? Meaning, way back in my abdomen there were adhesions. So. Nothing new, only different language for the same thing, for which I’ve had 2 surgeries. Meanwhile, since I had no idea what to do, I had written the German Professor an e-mail. Just as many times before, this busy man answered right away with suggestions, empathy and up lifting support. (Have I mentioned that he’s the only one NOT getting paid??)

Made an appointment with surgeon. Cameron went with me. She was puzzled as to what could be the source as well. But, no answers as I have to see the Gastroenterologist. (Finally, after 6 weeks waiting, it’ll be Oct. 30th.) Then, Nov. I will have a colonoscopy and after that, cancer test. If things have changed surgeon said, I may have to have radiation. (Maybe back to Cyberknife as they only radiated the ‘spot’ and not the whole abdomen with the danger of burning bowels.) I am not ready nor wiling to get a ‘bag.’

I went to Telluride the first weekend after Cameron had the Apartment. Lovely place and all furnished with a nice kitchen, two generous bedrooms, a large, sunny window with breath taking views of the mountains. Nice living room and dining area. The drive was beautiful through autumn colored forests. The town has quaint shops and Cafe’s. Lots of great places to walk. (Only parking seems to be a problem.) Of course I went shopping for groceries right away. Slow going with altitude being over 8000 feet. (I remembered my discharge instructions which noted: Avoid high altitude places.) ha. Didn’t seem to matter whether I was ‘high or low’ the pain the same.

I belong to an online Ovarian cancer support group. You probably have not seen the color of that ribbon. It’s Teal. It gets so lost in the sea of PINK and breasts. I posted about the malady and what I could do. Prompt reply from several ‘sisters’. It seems a very simplistic treatment but I was willing to try anything. A piece of Flannel dregded with Castor Oil, then a heating pad. I did this for a week. Heat feels very good on the spot anyway. Two days ago, when I woke up I had a strange sensation. Could not figure it out right away, then I knew. NO PAIN!! I could not believe it. I didn’t dare to get up right away for fear it may return but when I did, I only felt a tiny ‘twinge’. I was elated, hoping for perhaps an hour or two. Well, I got a whole day of this priceless gift. NOTHING compares to the absence of pain. I did some cleaning, laundry, shopping, writing and walking. It was also enough time to pick up some renewed hope which had fallen around my knees. It does spring eternal.

Yesterday, was not as good but also not as bad. I am also taking mineral baths with a whole host of different salts and additives. The other new thing is a new marijuana device and cartridge. No more Bong and no more smoking, which I detest. It burned my throat and my lungs. This one looks like an e-cigarette holder and it’s vapors only. No smell (which I dislike) and no going outside in the middle of the night. Between these 3 new treatments, any one could’ve made the difference but I’m not going to analyze. I am just so very happy to have less pain right now. I am still taking Ibuprofen (600 mg) but no other drugs. I have also been on many of my friends’ prayer list and credit those as well.

Hopefully submitting myself to all these tests will bring answers. I KNOW there is ‘something’. It could be ‘just’ more scar tissue (adhesions) but I think it’s too isolated. It could be a crimped colon or maybe it twisted? Well, I can guess as good as the docs. As I’m writing this, the pain is returning. Crap. Well now. We just have to wait and see. I had told the surgeon that she had better get me well so I can go to Europe in Spring, actually what I’d said was: ‘Come hell or high water.’ Neither one would be advisable.

Up-Down-Sideways

Posted on September 23, 2012 by admin

Mom, “bonging and banging”

Another one of Colorado’s beautiful Fall days. Colors are just at the right Peak and I miss the picture posting function. It stopped working when computer crashed due to virus.

Not much difference to report since last posting. I am just trying to breath and eat. I’ve lost more weight since I have so little appetite. The days run into each other with the same complaint. Pain, nausea, constipation if I take meds, doubling over if I don’t.

The only thing that helps is Marijuana. I still don’t like to smoke it. I don’t like the smell of it, the taste of it so in this sense it’s not enjoyable. BUT, after four puffs, the nausea is gone. A little later, I feel hungry and so I hurry to prepare something that I find interesting enough to eat. It’s a challenge. Portion size has decreased dramatically. Sometimes, I crave ‘junk food’. (Let me state here quickly, that the idea with Baby food did not work. It’s awful. Salt-free, taste-free and just plumb boring. I remember now why babies spit and we unrelentingly scoop up the bits and re-enter it, making plane or car noises. ) I thought I could invent a really good diet for this Diverticulosis but it’s different from person to person.

I decided to ignore my local doc’s advice to forgo Gastroenterologist. I need someone to help me and I need answers. On the last visit he repeated that he thinks it’s the cancer and I should have oral chemo.

Knowing how nauseated I am already this idea is the last thing I want to have reality. Talk about SICK!! There are no Gastroenterologists in this town and so I made an appointment in Grand Junction. Of course, being a new patient, I have to wait until the last of October to get in.

When I wake up, the first thing I check is whether I’m nauseous. The other day, it was really bad and the first thing I did was to go outside and have some marijuana. That stopped the nausea immediately and then I could breath. I experiment with food. Liquid, soft, then more fiber. Doesn’t seem to matter much. It’s really depressing that as a chef I now find food repulsing a lot of the time. When I do manage to eat, it seems to go right through me.

Yesterday, I walked a few blocks to visit the annual Pow-Wow. I sat there and listenend to the strong pounding of the drums and the singing-chanting. Beautiful, colorful regalia of the dancers. Hopefully, today we will see the gorgeous fall colors.

Cameron is getting ready to leave soon and I am torn as I am so used to him being here, especially at night. I know I will miss him terribly but, he has a life and must be able to have some more fun things to do, than listen to me retch.

Missed my grandson’s 9th birthday and the distance seems longer each year. I am delighted by his intelligence, good grades (looks) and now football. I miss hugging him.

Finally!! Discovery of pain source.

Posted on September 5, 2012 by admin

For the last couple of weeks I felt very sick. Nauseous nearly every day, all day. No appetite and still this horrid pain. After these TWO surgeries and now still..

I’d called Dr.’s office in Grand Junction and got the nurse, who said I should make an appointment with my Doc here, as surgeon is on vacation.

The day of the appointment was a particular bad one and I just could not sit still. I was soo sick I was afraid I’d vomit after every second breath. I could not find joy in anything. It was simply too far away. Cameron went with me just in case I’d pass out.

I told Dr. of all these things. We asked if this could be Diverticulitis but dismissed it after he said that I was on a good diet. When I had researched this malady, I was puzzled how I could have this when I walked, ate healthy, etc. Research states that Diverticulitis comes with a ‘typical American diet’. Little or no fiber, couch potato. That was not me. Dr. was going to rule out Diverticulitis and said, there were so many other things that ‘could be wrong’. Also, that he was not very happy that I don’t have chemo. He gave me a copy of the pathology report whic states the existence of ‘mucinous cancer cells present’.

I remember telling him (and my two other doctors) that ‘if the appendix were on the left side, this would be the very spot of the horrid pain and it feels like someone was stabbing me.’ Also, the lack of appetite.

We were all so concentrated on the scar tissue/adhesions, that everything else went by the wayside. One must remember that I am NOT a doctor.

I went home and even though had doubts, started to research many web sites on this disease. Came across one particular one from University of Freiburg/Germany. What caught my eye and got my attention was the describtion of the symptoms. ‘ Patients will complain of severe pain in the left, lower abdomen. Often they will say: If my appendix were on the left side, this would be the source of the pain. It also feels like someone is stabbing me.’

These two symptoms are the most important to recognize and any good doctor, who listens, will be able to diagnose. Diverticulitis is an Auto Immune disease like fibromyalgia and many others, when there are small pouches in your colon that have filled with fecal matter and has become inflammed. This then, is that excrutiating pain people feel. Nausea, (vomiting) lack of appetite, chills are more symptoms. First thing to do, no fiber! Liquid diet and later soft, easy food. It is manageable with food. The clincher was, that my Vegan diet, which was so tremendously important and helpful for cancer, is mostly the wrong one for Diverticulitis. Too much raw fiber. I couldn’t believe what I was seeing. But, I was so very glad to finally put a name to this and get pro-active. I got stool softeners, antibiotics, pain meds but stopped taking it since it makes me constipated and that hurts a lot.

I got a prescription for an antibiotic for Diverticulitis (‘in case you have it’.) When I took the first pill, I got so sick I ran to the bathroom and …. I felt I was going to faint and called Cameron. He was right there, holding me up and cooling my face and neck. He also heard mecry, late one night when I hurt so much. Role reversal when he held me and soothed me.

We went to the Dispensary, after the doctor’s visit. I was so sick I could barely stand. I bought different things, since I couldn’t eat the oral marijuana stuff due to nausea.

So. Against all earlier protestations, I would start smoking it so it would get into bloodstream right away and deal with this nausea. It took awhile to get the hang of it but then, after only a few puffs, nausea was gone. The world looks immediately brighter and better.

Now, I am into revising my diet once again to settle the colon. I am working on menu selections for, maybe seven days and then go on from there. In addition of the Vegan diet, which I have these recipes on the blog, I will have some for Diverticulitis as well.

One of the first things I cooked, that really appealed to me, even in this nauseated stage was a home made beef stock. I bought a nice beefy bone (man, is that a turn around from no meat!) and small pieces of stew meat. I also had leeks, carrots, onions, root of celery and green celery, bay leaves, a little tomato paste. I sauteed the meat, veggies, added water and cooked this for over 2 hrs. Then, I strained the broth. I had not been able to eat for nearly three days at this point and was a bit apprehensive that this too, would not be the magical food. I slowly sipped this wonderfully hot broth, that also smelled so good and lo’ and behold, it stayed down. I felt I was warming my whole insides. I had another cup. Wow. I am also adding more Probiotics. I am sure that as time goes on I will have more information how to help oneself.

I came up with ’emergency food’. When I am nauseous, can’t eat much, don’t feel like cooking and need something in my stomach, I will eat Baby food. It’s clean, non toxic and all pureed for the ultimate soft diet.

So. Rather than being done with this blog, it seems that there are more things to help with and share. It’s been over a months since the second surgery and finally I have an answer. I had been in bed most of that time, either dealing with nausea, pain or both. Clutching my heated beenie bag and wishing I were somewhere else. A few times, I just broke down and cried when the pain hit. I’ve not been out of this house, except for grocery trips since I came home. The walls are closing in. I’m fighting depression when I think of the long, long winter ahead. A few friends have stopped by but most of them have not. When I asked where they were, they told me ‘because my son was here that they did not want to interfer’. My goodness. My son is busy with his coaching and other things and why would that be interference? Hurt my feelings.

It’s been nearly a YEAR since the odyssee of running down this pain. Surgery was still not in vain because she did cut out a lot of messy adhesions and repaired the urethra. Another couple of days of barely voiding would have shut down everything.

I am trying to go on short walks. I am trying to figure out how to best help myself. I cannot believe that no medical entity picked up on those symptoms!! And so, the saga continues. I am getting bored by it, you may be too.

I thought, when I woke this morning, that this would be a better day but I can feel the nausea starting and sitting in my throat. —-I will stop for today.

Second surgery

Posted on August 19, 2012 by admin

The problem with time is, that over the span of a few days the mind’s focus is on something else and not being able to take notes, things become a bit blurry.

I missed a couple of key points with the first surgery. Of course, important news was, that there is no new cancer growth.

The other strange thing happened was, one night, when I was in extreme discomfort and pain, I’d rung the bell. It took 25 min to get answered. I fleetingly thought, I was glad I’m not having a heart attack. I asked the nurse’s aid to tell nurse I need pain meds. She trotted off. I was holding my expanding belly, moaning, crying in pain. Nurse came after many more minutes passed, only to tell me she had to call Dr. H. Came back and said, I was not getting any meds because : Dr. H. had said, since I’d taken morphine prior to surgery, the pain imprinted on my brain and this was NOT a real pain I felt. I looked at her in disbelief and said, it didn’t even make sense.

She left the room. I was doubled over at this point just crying helplessly and wondered whether I was in TWILIGHT ZONE!

I rang the bell again and again nurse’s aid came after a while. I said :’ I need pain medication right now! After no one came, by now it’s 2:30 A.M and I had no pain meds in nearly 6 hours, I rang the bell again. This time I said:’ This is a hospital and I am in distress. I am hurting very much. If I do not get any pain meds, I will call my son, my daughter, the administrator.’ Finally, I was given Dilaudid.

(In retrospect, this was the time my abdomen was filling with bloody fluids.)

Next morning, Stuart came on durty. He was there when I was in recovery at the first surgery and witnessed how very sick I’d been. I’d requested that the nurse from previous night not attend to me again. I am grateful for his excellent care.

After walking in the hallway and going to bathroom by myself, it was decided that I could go home. That belongs to first part. ———–

Back to Montrose Hospital and being told that I needed Emergency surgery and needed to go back to Grand Junction. This time, by ambulance with flashing lights. The road to Grand Junction is really, really bumpy. Of course, my main worry, in the ambulance was, that I either get sick, or have to use the bathroom.

Nice EMT Rick assured me and talked with me. Made me as comfortable as he could. Gave me a big hug when they unloaded me and wheeled me to surgery. This time, a woman anesthesiologist. I pleaded to give me something different than her peer had. She said, not to worry.

I woke up, sore, in pain but not sick! What a difference. When I saw my abdomen, it looked like a trussed turkey. I had staples, stitches AND a red, plastic hose woven through. WOW. Dr. H. said, she was not taking any chances.

By now, I had not eaten anything in 5 days. ( I.V. fluids don’t count.)

I’d given anything for a hearty, nice, wholesome, home made chicken-noodle soup. But, nothing but the same awful, unhealthy choices.

Finally, I was allowed to come home a second time. My good Julie came to stay with me. I still had nausea and pain. I was still dealing with constipation. I was so scared of THAT, that I didn’t take anything stronger than Ibuprofen.

One very early morning, I felt like I couldn’t breath. Could not get my breath nor breath deep. That scared me. Off to doc for H2O saturation test. I had to walk around the office with and without oxygen. Level fell to 86 (should be over 96).

Went to get oxygen and for 2 days, it helped a lot. Next morning, I breathed easier on my own again. Whatever the obstruction was, or swelling due to tubes, was gone. I could not envision my life on oxygen. Can’t travel.

My son Cameron had called and he was going to drive to Colorado to help me. Julie had to go back as her Grand father had passed away while she was here. Cameron arrived Friday evening and Julie left early next morning. I really appreciate that he would interrupt his life, yet again to help me.

On Friday, Julie took me to Grand Junction to have the whole stitchings out. The incision burned like hell. Felt like the scalpel slicing through. THAT had memory! The nurse said to use Orajel. We got some and indeed it helped some. It’s been a few painful days and slow walking. Each night, I pray that when I wake, it’ll be easier and better.

The BEST news of all of that is, that my Oncologist and Gyn/onc/surgeon both have said, I DO NOT NEED CHEMO!! I am doing so well with my lifestyle and cancer is growing sooo slow, that I can MANAGE it without chemo. It took a few days to really sink in. That I had won! The whole, long journey, the ridicule by some medical professionals, the head-wagging from acquaintances and some friends. The loud, sarcastic exclamation from Dr. Giggles:’ YOU CAN’T CURE CANCER WITH FOOD!!’ Well, perhaps not ‘cure’ but certainly we can help ourselves doing the best we can for the Immune system.

I have been told by doctors, that I was in very good shape and how it made all the difference. Once I am recovered, I will then continue this lifestyle.

Now. I want to count my miracles. One: Camino de Santiago. To be able to walk all that way and NOT have any pains (other than normal ones). TWO: Even though the cancer is not gone, it certainly has not moved or grown since I’ve returned, last October. Three: That my body responded to this healthful way and is healing itself. Thank you God.

Yesterday, was the first day that when I woke up, there was NO pain. At all. I layed in bed and cried grateful tears. I get a few more years. I can travel. I can function. I can visit and interact with my friends. I can do normal, every day stuff.

People just do NOT know how precious health is. They moan and complain about silly, un-necessary things. Forgetting the wealth they posess. Or, stuffing themselves with enough junk food and toxic crap. In time, the body repays this horrible treatment and falls apart.

I am most happy to end this chapter with a heartfelt : CAMINO NOT CHEMO. Hard work and faith.

Surgery….part I

Posted on August 12, 2012 by admin

The day of surgery my friends Inge and Monika picked me up and off we went. Lovely day but I was somewhat apprehensive. (I was also already hungry.)

First stop the Cancer Pavilion to check in and complete paperwork, then across the street to St. Mary’s Hospital, Surgical Unit.

We didn’t have to wait very long before they came and got me for surgery prep. Had a little problem finding a ‘workable’ vein for I.V. Then the anesthesiologist came in and we discussed anti-nausea meds in my IV so I wouldn’t get so sick, as I had been on previous occasions. One more hand wave to friends and wheeled into OR.

I remember voices, saying ‘take a deep breath’. I was in a LOT of pain and asked for pain meds. Was told again, as soon as my Oxygen level was alright, they could give me something. Then, I was wheeled into the room.

Suddenly, one huge wave of nausea hit and I’m coming up into sitting position, in spite of my just incised belly and vomited. On and on. I was SICK! I tried to hold my belly and its stitchings but also had to hang on to Basin. At one point during retching, I heard this sound: “drrrrrrd”. I knew I had busted a staple but was also concerned about the noise-feeling.

I had told the nurses and my surgeon as well. Since my incision was doing well, no one thought of anything else. (I’d asked one nurse’s aid to measure my belly as it seemed bigger to me.)

Dr. H. told my friends and me that I had one of the worst cases of adhesions (scar tissue) that she had ever seen!! Also, my urethra had been totally encroached and choked with this stuff. There was one tiny place where urine could seep out but I was very worried at that time. Only a short time later and I would’ve been unable to void!!

I had the catheter removed and could do other functions (except one vital one). Was given uniform discharge instructions and a friend came to pick me up and bring me home. We stopped at a Cafe, so I could have a little breaksfast. Hospital Liquid and soft food leaves a LOT to be desired. Their “fluids” are made of canned soups! Beef, Chicken, Vegetable. Salty like all get out! They do have low salt but the taste of canned made me nauseous.

At home, walking in, the house looked so very nice as it was cleaned and waxed and polished. Had all my friends lined out to come in and help while I’m in bed.

As the first day went on, I became bigger and bigger. My belly was extended to about 8 months pregnancy size. I thought, at first, that I was stopped up. Constipated from meds. Discomfort became such that I asked Connie to take me to the Emergency room. Nice, young Lady doctor, who then had the job to help get me started. Undignified procedure, to say the least. Also, at one point, when she advanced toward me with all the periphenelia, for a second I was that 8 year old child again, being manhandled by a nurse. That’s when I started to get teary. I didn’t want her to think that I was being difficult, so I told her what had happened. Sure is funny, how long any childhood trauma can linger.

I had also received a small bottle of Citric Magnesium. To help clean me out. This is the very stuff they give you for a colonoscopy. Came back home and for the rest of that day, into the night I would take small swigs from that bottle, plus suppositories. (I know. I know, it’s really indelicate but I can’t find a way around it.)

I had started to have severe pains and asked Connie to take me to ER. Got pain meds per IV and after that felt well enough to go home. (I kept thinking, that something was wrong with the size of my belly. Friends suggested that this was ‘swollen’ and due to having surgery.) As did the ER crew. Everyone looked at the incision.

About 4:00 A.M I had an 8 lb Alien and then went to the bathroom twice more. Totally clean!! I was so elated that this was working.

As Connie had to leave in the afternoon, I called my friend Berle and she came for shift-change. Barely had changed my bed when I got my second BIG wave of nausea. I was so sick, I thought I’d die. Projectiles, wouldn’t stop and then, painful, dry heaves. I also had to use the bathroom and when I came back to bed, I thought I had missed the pot as I was soppy wet all the way down but upon checking, my GOD, bloody stuff running out of my navel wound.

I looked up at a worried Berle, who couldn’t keep her concern in check and started crying because she was so scared for me.. I declared that I need to go to the hospital and be admitted as I could not keep coming back to ER and SOMEONE needed to help figure out what had happend.

I was admitted and put into a very nice room. My friends came, as I had put the call out. Dr. T. came and looked and requested a surgeon to look at me. Handsome surgeon came. He took a long Cotton Swab and put it into the belly hole and there was no bottom. He figured that I had ripped every INTERNAL stitch. I showed the nurses how, with just a little bit of pressure, a whole lot of bloody-water came out. Took a video of it so no one would blame Montrose Memorial Hospital. Surgeon called my surgeon and she wanted me back in Grand Junction to repair this herself. Since she knew what all was there and needed repaired.

(There is a picture and video on my Facebook, caminonotchemo page.)

I would like to say a BIG thank you, to my camino friends in Canada. (Sorry, I accidentally deleted your wonderful e-mail. Please send your e-mail address.)

Tomorrow…

Posted on July 24, 2012 by admin

It’s getting very close and I’m getting very antsy. Hospital called yesterday with pre-op instructions. NO food/drink after midnight, tonight. I’m already worried about food or, the absence of it.

I’ve requested that they add anti-nausea meds into IV so I won’t get so sick upon waking. (I also worry about waking, or not waking.) I remember, some time ago when I saw a medical show where the patient was given anesthesia and they started to cut him open and all the while he was wide awake, felt everything but couldn’t move. I really know that this is silly and I don’t know why my mind conjurs up these oddities.

Friends have been steadily visiting and asking how they could help best. It’s great to have this circle of friends embracing me with a big hug. They will clean house while I’m in the hospital, also shampoo carpet and work in the yard, trimming tree limbs and bushes. (That alone is worth going to the hospital.) Others will prepare soup.

Last night, when I woke with pain and took meds, I was so hoping that this was the very last time I’d feel it. That, in a few days, other than the soreness of the incision, I’m done. My son Cameron is offering for me to come to San Francisco after I’m healed as a Reward. I am so excited. Also, making plans to go to Austria. It may be cutting it a little short with time. May have to postpone it until spring.

Professor Koebe wrote a nice note to wish me well. Still laments the fact that he can’t personally do this surgery. I am definitely going to go to Wuerzburg to see him again and Marion, his secretary.

My daughter called the other day and we had a nice, long talk. I know that her not being able to come is tough on her as well. Grandkids sending notes of love and support.

So. I’ll meet you all here, in a few days. Gung-ho and ready to roll.

I will put myself into the hands of our Lord.

Full circle and Dr. Two

Posted on July 15, 2012 by admin

I drove to Grand Junction myself, the other day for my appointment with Oncologist/GYN/Surgeon. (I had been there just two days prior for a CT scan. )This was, after all, ‘number Two’. This was the one, I had meant to see when Dr. Giggles insisted that I go to Denver, ‘because Dr. D. was ‘number one’.

We all know how that worked out and ended. Wasn’t too impressed by number ‘one’.

So, I was a bit curious how I would find this good doctor? Would she be brusk? Unfriendly? Arrogant? I sat in the treatment room and nurse did the vitals. Bloodpressure up a but it seems to match the surroundings.

After that, I sat there and waited. Nothing so boring as to sit and wait. Not even a magazine in there. My cell phone didn’t work in that little room. I took my checkbook out and tallied the sums. Not very exciting nor fun. Noticed how much I spend on medical bills and holistic stuff. I just heaved a sigh and put it behind me. Light knock on the door and in came Dr. ‘Two”. Nice smile, handshake. Then we discussed the lengthy tirade of my futile visits so far.

She examined me, then told me that she could not tell the source of the pain. There are many choices. But the CT scan was alright. No changes. No new growths, or movement from the old one. THAT is good news.

Here are my options: Try to manage pain ( not an option because it’s not managed.) Or: have a laparoscopy, go in, look and see’ then discuss further steps. (WHAT??? Go in twice? No. No.) third: Make a larger cut, so she can get her hand in (too much information!) to feel around. She said, they really can’t ‘see’ much therefor have to also ‘feel’. She wants to remove the cluster of small lymphnodes. They are no problem at the present but could be. Then, take out that piece they placed there over 10 years ago, for the adhesions to grow onto. (Should have been taken out and exchanged for a newer one, years ago. Maybe that’s the culprit??)

She will then place a new material in the abdominal cavity, the material being similar to ‘Saran Wrap’ so adhesions can’t form. We will NOT touch the ‘errant lymphnode’ which is too overgrown with veines and blood tissue.

Surgery would take under two hours and I’d have to stay there 2-3 days.

So. Our number TWO doctor has no such hesitations to help me, as did doctor number One in Denver, or my GYN here, or, even worse Dr. Giggles with his arsenal of chemo.

I like her and I absolutely trust her to do her best for me. Finally. Someone to help alleviate this horrid pain. She asked me to think about it and then let her know. I was already pretty sure when I left, that I would do this surgery. She also assured me that we’re not doing chemo until ‘absolutely’ necessary. That was balm to my fearful soul.

I met with Carrie and Laurel, Gracie and a couple of their friends for lunch. Fun to have young, vibrant people around.

When I came home, I called Cameron to discuss these new options. He said they sounded good to him, too. He offered to come out again as well but I can’t ask so much for just a few days. Besides, sometimes we need a woman to do ‘womanly’ things.

Friday morning, I called Angela, her nurse and said I’m ready to set the date for ‘redecoration of the pelvis.’ She laughed and we settled on the 24th, July.

Now, that this is settled, once I have passed the unpleasantness of waking up right after, which is always so bad as the pain hits severely before they can give you anything. I remember this from every other surgery I’ve had but yet, this is not enough to deterr me.

Now, I’m setting up the friend rotation schedule, for after when I’m released. I so wish my daugher could’ve come to help me physically (she helps with the writing of my story with her brother) but with the children and no money for the trip, it’s not possible. Cameron can’t come this time as he has to move. But, I think it’ll only be for a couple of days. Friends have offered right away to stay the night. Even from far away, like Boulder, my friend Rebecca has offered. Many, many well wishers and so much kindness.

Of course, sneaking into my brain are the thoughts that I usually have before any surgery. That very thought that woke me, early this morning before even the birds were up. I sure hope I will wake up. What if I don’t?? Well, I wouldn’t know about it but the (even remote) possibility makes me sad with missing my children, grand kids and friends already. And then, there’s my little buddy.

I better push all that out of the way and concentrate instead on my trip this fall. I’ve seen some pictures of ‘Meteora’ and ‘Valley of the fog’, in Greece. I really, really would like to go there. But, I speak no Greek, ‘that’s Greek to me,’ ha (even less than Spanish!) So. I better stick with Austria. Just the thought that I could plan and actually go gives me new vigor. A very nice Facebook friend, from Austria, who’s a singer- (You Tube-Peter Martell) wrote the nicest comment. He told me that when he recorded ‘Amazing Grace’ he was thingking of me and praying that I’d find relief soon and asked the Lord to listen. Touched me to tears. Also said, when I come to Austria, he and his lady friend would sure show me around and help me find reasonably priced rooms.

It seems a long time now, since I’ve started this ‘cancer-health-journey, to now. I told my friends how grateful I am for their loving, never wavering support. For listening to my woes and tirades. For coming and helping, no matter how big or little the problem. In this, especially my ‘favorite Mike’. My son, who took a big chunk out of his life and time, to come and help me find treatment. My friends, Monika and Inge, who always take me for tests. Others who bring food, laughter warmth. Strangers, who, after reading the blog have called or written e-mails with suggestions and links to doctors and or Naturopathics. Others, who have become new friends and presented me with a Pedicure. Others again, bring vegetables, soup, cage free eggs etc. Or, bring the dogs when I had a particular low day, to cheer me up.

(I’d written an e-mail to recommended Naturopathic doctor in New York but have never received an answer). Never again heard from that woman Dr. in Boulder. That 15 min phone call cost me $75.00.

So. Next week, I will pack my bag. (They have T.V. computers in the room). I can wear my own PJ’s. Hopefully, this will be my last surgery. I sure would like to have a few years without pain or some other health problem. As long as the cancer behaves, I’m good to go. I will write after surgery, as soon as I’m able.

Thank you all. Hugs all around.

Oh, I want to mention that it rained yesterday. A true ‘Gully-washer’. Everything looks brigher, greener and grass is finally green and not brown. Birds are singing and the scent of fresh washed air is coming in through the open windows, carried by a light breeze. Great Sunday morning. Thank you GOD.

Rain, finally and new Doc

Posted on July 6, 2012 by admin

After the long, long dry conditions and the horrible fires in our beautiful state, finally it rained. Yesterday, thunder crashed and lightening all over but with it blessed rain. I ran outside to take pictures as the earth opened to receive the long awaited rain. Parched as it was, water ran in thick and heavy rivulets down the street. A cooler day is here and all week our Monsoon season.

Fourth of July was subdued due to all the people, houses and forests lost. Also, no fireworks as it would have ignited the rest of the state. Some people actually were complaining about that. Fools.

On Tuesday, (my friends) Inge and Monika and I, set out for my appointment with Oncologist. We chatted and looked out at the dusty, dry fields. Almost in Grand Junction, each time we turned on the air conditioner the car sputtered and so the trouble began. It was a sweltering 102F and no air. We pulled over, let it rest, started again. With its last power we pulled into the parking lot where it promptly died. But, we were there.

I explained to Dr. D. my whole, painful dilemma. She examined me and pounded front and back checking and after all that we agreed to have the OB/GYN Oncologist/Surgeon have a ‘look-see’. Well, I’m certainly hoping that once, on this fact finding mission, if she sees the problem and it is adhesions, she will snip it on her way out.

I really like Dr. D., who is competent and compassionate. She told me she would talk to surgeon herself and then that office will call to set up appointment. Sure enough, Thursday they called. I am impressed with the speed and efficiency of taking care what they promise.

I am trying hard to get my excitement back for healthy living. Due to this pain and lack of appetite, I was eating other foods as well. Not too far away from my ‘lifestyle’ but yet enough to make me feel guilty. After a stern talking to (myself) I am now back on track. Neighbors were grilling BBQ and that smell nearly drove me off the edge. I just wanted to run over there, grab that piece of steak (or chicken) and run off. HA. But, I did no such thing!!

Friends come by and spend some time. Also, taking me out to dinner. I had a nephew and his wife and their wonderful son, Zane, come visit. I have not seen nephew in 30+ years. It was a nice visit. I cooked Schnitzel and several salads and we had a great dinner.

When the hot water heater broke and water was flooding the basement, the mice came up. I am so squeamish when it comes to those critters. (..and snakes… and spiders.) But, I couldn’t let them run free and ruin my sleep, running over things. I had bought humane traps. But, could never tell if it really worked. Had my ‘favorite Mike’ come over (husband of a friend of mine) who repairs, fixes and in other ways is very helpful and kind. His 8 yr old son comes with him and takes out the traps with carcass and re-sets them!! I feel only slightly embarrassed that he can do this and I can’t. I think, we are successful and for the last two nights, I slept very well. Of course, that could also be due to the new, colorful Marijuanan candy. There are soooo many different edible things to choose from. Yesterday, when it was cooler I also walked for 45 min.

My daughter is busy trying to keep her children entertained for the summer and work at the same time. She lives far away and won’t be able to come. Cameron is on business in Venezuela.

I suppose my friends will take me to the hospital and bring me home and take care of me for a few days. I plan to start hiking again, once the damn pain is gone. I told Dr. D. I need to be all improved by mid September as I have plans.

I will be so very glad when my ‘whiney’ season is over and I can concentrate on the ‘cancer’ instead. So far it’s behaving and I really am thankful because I don’t think I could handle both.

I also want to thank all of you for the kind messages, suggestions, comments and support from ‘you’ out there. Most of you I don’t know but am really humbled by so much kindness. THANK you.

Enough is enough.

Posted on June 27, 2012 by admin

Last week I had my CA 125 (cancer marker) test. I am very relieved that it is ‘the same’. Actually, it went down a couple of points but this is not of huge importance, in this ‘crap shoot’. I was worried, that, perhaps due to this continuous pain, it may be affected.

Each day, I was hoping that ‘whatever’ this may be, would ‘just go away’. It didn’t. At odd hours of the night, when meds had worn off, it came back with a vengeance. I was walking in circles, crying and howling until, finally the morphine kicked in. I simply can’t understand WHAT this could be? My doc here seems to think ‘it is the cancer’. He suggested to call Oncologist, have a laparoscopy and ‘mark the interior with clips, so it would show up when doing radiation’. I took the phone away from my ear and looked at it as if a snake was going to crawl out. Always, always ‘the cancer’. I so want to prove him wrong but not to the point of being stupid.

Even though I do not believe it is the cancer but this also could be based on denial. Right now, I don’t care what the source is, I want it removed. So. Whatever it is I have to do, I will do.

Last Sunday, a couple of friends (and favorite dog ‘Pumpkin’ and Max) set off to the black Canyon to see if I could hike a bit. I wore my camino T-shirt and had my poles and ‘Quasimodo’. Bittersweet, at once so familiar and yet already in the past. It was around 6:30 a.m when we parked the car and started walk to the next look out point, which is nearly 2 miles. After only 10 minutes or so, I could tell how much out of shape I was compared to one year ago. We stopped at the picnic benches and had our breakfast snack. We could smell and see the dark plume of smoke from all the wild fires that are burning in our beautiful state. No humidity, no rain in months.

On the way back there were a couple of times when I thought I need to stop and let my friend get her car. It was getting hot and the incline seemed more steep. But, then I thought, ‘just another few minutes’, just keep going and I did.

I was hurting and tired. My dear friend Bonnie came and helped clean my house. I’ve been having problem bending, mopping, pulling weeds. She didn’t do lengthy speeches of ‘ let me know if I can help you’, she just came. I wonder how many people actually would call and say ‘remember when you said….?’ Actions are needed so much more. If you know someone who is not doing well, words don’t matter a lot. Help with shopping, driving, or just visiting do wonders. (Most of us will not call.)

Laying on the couch, having taken some meds and my VIP Beanie bag, which gets heated in the microwave and feels soo good on my abdomen. I could hear her banging around in the kitchen. It’s an unsettling feeling not being able to DO this myself. Having done pretty much everything ‘myself’ for so many years, it’s tough letting go. But, she’s been steadily by my side for so many years and especially the last cancer-rodeo, years ago. A simple, heart felt Thank you for her.

Sunday night, when I finally could have had a good night’s sleep (with a little ‘tootsie-roll’ marijuana) I woke to some rustling. There it was again, the MOUSE! Ever since my basement flooded, they’d come up into the house. Hiding during the day and dancing around the traps at night. Jumping up or down and it is very un-nerving. I had bought every ‘HUMANE’ trap as I can’t bear to see the squished, little body with bloody tongue sticking out. These contraptions are nice as one can’t see anything. Mouse goes in to try to eat Peanut butter and ‘wham’ it closes. The whole thing get’s discarted. Well, this didn’t work anymore. Then I had enough sleepless night and brought in the BIG guns. ‘d-CON’ toxic and powerful. I had a good night, last night!

Next morning, I took an early walk as it is so hot during the day. Pain. Then I got furious at that too. I thought about ‘why am I waiting until August’?? If it is the cancer, then I just have to submit and have oral chemo. If not, then go in quickly, get these adhesions out and leave. I remembered Dr. G. saying that ‘we shouldn’t open up, worried what we may find’. But, when I had the last surgeries, they didn’t know I had cancer and we opened up the whole abdomen TWICE! I have to take a chance as I cannot live this way. Not at all.

Hopefully, this will all be over with (whichever way it goes) so I can go to Austria this fall. Well, I’m not sure anymore if it will be Austria as Cameron found this gorgeous place in northern Greece. The Valley of the Fog, I think.

Venus in Transit

Posted on June 11, 2012 by admin

It seems that a lot of time has passed since my last entry. Actually, not really. If I start to recount the past days and describe these painful bouts, I will get very bored with myself. I can’t believe that there’s nothing else to talk about than constant pain. But, it is my life right now. Just trying to work the meds to where I can ‘outsmart’ it, is a full time job.

Yesterday morning I managed a 40 minute walk. (Last year, I managed 8-10 hours). I miss, really miss this good feeling and energy I’ve had. I have very poor appetite!! I feel like I’m slipping and can’t get a good hand-hold.

I spend a lot of time in my back yard. Now, that the Medicine Wheel Garden is finished and so lovely, it gives me such pleasure.

This past week, there was all the attention on Venus’ transit. I had brought free newspaper home and started reading. Good things are going to happen to me, I’d read in my horoscope. Venus is in MY sign. It’s always nice to read something nice. I was really very pleasantly surprised when this ‘love’ promise actually started to become reality.

I had befriended a young lady over FB and would share comments, pictures, with Lori A.H. She had sent me a message asking if she could meet me. After a little scheduling back and forth, she came Thursday. With a potted plant in hand and big, lovely smile.

We got along like ‘a house on fire’. She was so complimentary and credited me with lots of wisdom. The time was too short before she had to leave but, there will be other times, I am sure.

Then, Saturday I received a letter from Amber. She is the daughter of an old acquaintance who’s life I had saved about 28 years ago, when his two gas tanks caught on fire under his pick up. Lonely, empty stretch of highway, on a Sunday afternoon in January and the Superbowl on, no one else traveling.

Her dad and a few family members and Amber were coming through Montrose and wanted to visit. I put up all six people, fed them and next day they left. That was 2 years ago.

She had just found my address. The letter is filled with Thank-you’s. She states that even though the time was so short, I made a profound difference in her life. In part, she writes: Thank you again. You are a special person who really makes a difference. Please know how truly amazing and inspirational you are. Thank you a million times over!

I was totally and wonderfully surprised. To think, whatever I had said and done in these few hours, made such a difference in this young Woman’s life. (I think she is 29).

So, how very accurate this Venus Transition was in my life as well. I felt warm and appreciated, even 2 years later or maybe, because it was 2 years later and she still remembered. So, I am glad that I was kind and hospitable. I have no clue what in particular I’d said. This letter and Lori’s and Julie’s visit really made my day(s). It buoyed my stale energy. Another new friend (met her through the blog) invited me to have a pedicure, next week. It’s raining Love and Kindness. Venus in Transit.

Oh. With all of that, I nearly forgot the awful day I’ve had. For days I smelled something musty. I kept saying to Julie,’ I smell something wet’. She couldn’t really smell anything so I let it go another day. Then, Thursday morning when she left, I thought to check the cellar. I went downstairs, turned on the light, openend the door And … WATER. Lots of it. All over. Immediately I called ‘my favorite Mike’. He came at once and at least shut off the water. All hot water. Hundreds of Gallons. Water heater valve had broken and so it kept running over. He called the Plumber. Luckily, the warranty was still in place. I was overwhelmed with all these tasks plus hurting like the dickens. I called my friend Bonnie, at work, trying not to cry and asked her to come help me for a bit. Which she did. She handled the Insurance company and just to have someone here, had me much calmer. Is it the meds? Is it my age? I seem to have a harder time dealing with sudden mishaps, or changes.

Meanwhile I had yet another appointment with Dr. Michael. He has performed several colonoscopies and my lung surgery, last year. It’s actually on the same date this July 5th, that I will have a colonoscopy. I am sure, my colon is fine. But, ‘just in case’ as the last one was 6 years ago.

Another doc, more tests and CA 125

Posted on May 30, 2012 by admin

I can’t believe how unraveled my whole life is becoming. More questions than answers piling up. I have faithfully taken those Chinese Herbs. (They look like little BB’s.) I’m sure that some of the debris from the kidneys got out. It gave me temporary relief and I thought, I nailed it. Until the pain came back with a vengeance. It feels like some little gerbil is biting its way through the abdomen. Really. Although not much faith, I called my OBGYN for an appointment. This was de ja vue of 11 years ago, when I came to his office, crying in pain.

Well, we now know how that ended. This time, I already know that I have cancer, so I just needed help with this pain. He was not encouraging. Would not advice laparoscopy because they may encounter something much worse, i.e. cancer stuff and won’t be able to deal with that kind of surgery. He suggested a colonoscopy. Wow-yay! But, since I’ve not had one in 6 years I said O.K. I am not, at all looking forward to that procedure.

I remembered that I had some dealings with pain two years ago, which had me visit the Emergency room. I got my diary and went back and sure enough I’m describing the very same symptoms, place and severity. They hooked me up to Morphine and I remember saying , ‘Thank GOD for drugs’ as it flowed through the veines and I could feel the relief at once. No diagnosis though. As I was still losing weight at that time, it seemed to disappear after awhile. I wonder, if these is the same scar tissue that I’ve had so much problems with, over the years. I’ve had 2 surgeries to alleviate that pain but it always returns-worse. Research shows, that it’s a chronic disease. To think, I may have to live like this, is not an option. I wouldn’t care if I got ‘just’ another 10 years out of it, I’d go for it.

I will have to call my Oncologist and see what she says. We know, this has nothing to do with the cancer, although my Doc, here, always seems to want to place it there. I’ve had my CA 125 blood test (cancer marker) the other day and doc called me yesterday to give me the result. It went up. He said to start thinking about oral chemo. He thinks this is the cancer pushing on something or has grown to where it gets in the way. I am going to be contrary again, and say no, these are adhesions. My oncologist says: This is not the cancer. Radiologist and her went over that CT scan with a fine tooth-comb and nothing has changed. (Except numbers are a bit up. But we won’t worry until numbers go up 35-45 points.) They went up only 6 points.

I was not surprised as my Immune system is fighting this inflammation and taking these meds will always change numbers. I can feel myself slipping. I wonder where all this great energy went? I am uninspired about cooking. I feel no great need to eat. (That worries me a bit). I am not motivated because I am in pain so much that nothing else seems to matter. I just want to reach in there and rip it out. I tell myself to ‘buck up’, to get over it, to stop being a wimp’. But time is starting to wear me down. I can’t concentrate on helping myself against the cancer, as I have to get my energies toward this issue now. If it isn’t one damn thing, it’s another. I am starting to feel overwhelmed, again. Since I have not been able to walk much, I’ve gained weight. That has to go so now I am back on track. But, my friends are not making it easy. They invite me, either out or to their home and surprise me with wonderful food, but not the kind I’m allowed. Then they say, oh, go ahead, it won’t hurt you this once! Yes, it does. And it’s not just once. I’m struggeling with low appetite and so they want to tempt me, so I’ll eat. Loving gestures but I need to get back into my lifestyle.

My friend Julie called and she will come on June 2nd to help me for a week. Help clean, cook and go walking with me. I wish my family lived closer.

My BFF Irene, send a birthday card with money and although I told her NOT to, she ignored me and did anyway. I’ll use it to have acupuncture since that is helping a lot. (And, maybe a pedicure because my feet hurt.) All these extra treatments and herbs and supplements are costing a mint. Not something that Medicare pays but yet vital to me, in fighting this fight.

I still try to envision my trip to Austria, this fall. I can’t seem to see myself there, yet.

I’ve been walking again because I can’t just sit here. I need to move. I’m taking Ibuprofen before I start and hope I can finish.

Tomorrow is my 68th birthday. I look at that number and it looks so strange. I don’t feel ‘that old’. On the other hand, two years ago when I didn’t know where this journey would take me and the ‘C’ loomed huge and scary, I am sure glad to see 68. If I just get to feel better, I don’t want anything else. Ever. I don’t care about a new house, or furniture or keeping up with certain people. I don’t care about sleek cars and who’s got more. I just want to feel better. In that is a richness beyond compare.

I am trying to get my ‘umph’ back.

Calling Dr. House.

Posted on May 21, 2012 by admin

When the TV series ‘House’ started, I watched each week, applauding the cleverness of this Diagnostician and super medical strategist. But after awhile his rude behavior got on my nerves and I stopped. Of course, there was a reason for this behavior. I remember he had a medical condition that caused severe pain.

NOW I understand what it must be like for someone who is in constant pain. How it eats away all the good feelings and joy. As well as appetite.

It took a few days for the dismissive way the Urologist handled the visit, to sink in. He had insisted on a bladder scope ‘to rule it out’. I’d told him, there’s nothing wrong with my bladder. Another test, that was not necessary. He gave me a precribtion for PT! Yes. Physical Therapy. I looked at it, then him and said ‘what?’ I can barely function due to this pain and I should do therapy???WTH? I may need a laparoscopy to figure out the cause. My oncologist is firm with her statment that this is NOT cancer related.

I am just sick of the whole thing.

My friend Lori, who works at Organic Grocers recommended a natural treatment. It’s for kidney health. Uva Ursi. Not to be taken longer than 2 weeks. So, I’m trying this right now. On Wednesday I’m going back to have acupuncture as well as the herb he had special ordered. Of course, there’s a lot of advice from friends. Try Asparagus. Try this tea. Try this herb….I am my own guinea pig.

Can’t concentrate on what to do and a new plan against cancer as I have to put this ‘fire out’ first. Yesterday, was a bad day. I am fighting against falling into depression. I believe that when I take morphine, it ascerbates this feeling.

I feel shut in. No real plans, since this is really holding me back. Can’t travel this way. Going to bed with pain, getting up with pain.

I still walk, some. When I think, that just a few months ago I was walking 8-10 hours a day and now, barely get 35-45 minutes in, I am really sad. Two years of medical dealings is now taking its toll. Can’t get my ‘oommmph’ back. How can anything keep hurting like this? Sharp pain. Am I whining now? Yes. Do I feel sorry for myself? Just for a little bit, at least until the pill is working. I want to say, stop! I don’t want to play anymore. I don’t like this game. I am tired.

Mainly what I need is a good doctor. Gosh, remember Dr. Welby? He made house calls. I’ve tried the ‘Symptom’ checker online. But there are too many possibilities so there’s no answer to be found.

If any of you know a good doctor, do let me know. I’m almost out of ideas.

Fiesta–Test results–new malady

Posted on May 9, 2012 by admin

We sure packed a lot of activities into the last few weeks. Filled with happy anticipation to see our camino friends again, I drove Cameron’s old Land Rover to Grand Junction to pick up Julio, Marie Anne and a little later, Cameron as well.

I’d bought a few flowers to greet MarieAnne and a bottle of Rioja wine (Bilboa) for Julio.

When I entered the hotel, they were already seated in the lobby, waiting. A big, cheery hello with a few tears from Marie Anne. They had visited New York for 4 days, then came by Amtrack to Grand Junction. Julio told me that MarieAnne, while looking out the window, kept saying ‘so big, so big.’

We stopped at a Diner and had a genuine American breakfast. Then it was time to pick up Cameron. What a happy reunion all around. Carrie had seen them the day before and spend a few wonderful hours touring the Monument.

Next morning after breakfast we took them to Ouray and Box Canyon. Amazing how that water rushes and is pounding with great force through the hole in the rock that took millions of years to create. They were duly impressed.

Saturday morning, they were helping to set up the yard and cleaning, etc. for the Fiesta. Carrie came with her sister and her dad. Their mom came later with marvelous Truffels.

Pretty soon, all guests had arrived and we introduced our guest around, mostly to people that had read the blog and had many questions for both.

Sunday, we went to the Black Canyon and also had a picnic. Cameron decided that they should see The Arches in Utah’s canyonland. They took off Monday, while I took care of things here and also had several blood tests and an up coming CT scan to determine, whether there has been any growth.

Blood test results were great. Cancer markers had not gone up. Stable. On May 2nd, we all drove to Grand Junction for CT scan and an appoinment with oncologist afterward.

Dr. M. showed us the scan and was reasonably sure that there too, was no sign of growth. BIG exhale for me. I did tell her about the ‘new’ pain in my left, lower pelvis. I thought and believed that I had a kidney stone(s). After viewing the scan, she said that Radiologist pointed out some small stones in the the Urethra. Thus, the horriffic pain. I told her, that I was afraid turning into a Junkie trying to stay on top of this pain. I am not going to live like this, is what I said. I figured out the best way to medicate: 1 Ibuprofen (600 mg, followed 45 min later by 1/2 of Morphine (10 mg). I nearly cried with relief when the pain finally stopped. I also came down with a unpleasant chest cold. This constant pain is taking a big chunk out of my ‘cheerfulness’ and up-beat, positivity, etc. These pills are making me not only dizzy but weepy. I’m going to try a brownie, laced with Marijuana. No nightmares and bad side effects.

Well, smiled Dr. M. looks like you have another 3 mos before we check. Keep up what you’re doing. Although I had not been doing that well and kept falling ‘off the wagon’ with eating all sorts of ‘regular’ food. But, now I’m back on it. I don’t feel very energetic when I don’t get my ‘greens’. She said, I want you to think about taking ‘Tamoxifen’. It’s an oral chemo pill. You can’t just keep having this cancer and even though, you’re doing well, should think about this option. I want to talk to you about side effects, when the time comes.

Well! I did check on those side effects: Stroke, peritoneal/ vaginal cancer, and a host of other possibilities. How can this be called a ‘life saving’ med??

I have 3 months to do something and try to get the numbers down, the tumor reduced.

My Acupuncturist was ordering herbs to diminish stones. Now, I must call and cancel. I wonder if Dr. B. could be wrong? I’m just stunned.

Those few days were over too quickly and Julo and MarieAnne had to leave. They couldn’t say enough about wonderful, colorful Colorado and awesome Utah. We were marveling at the fact that last year, in May, none of us knew each other and yet, here we were, darn good buddies and an experience that has bonded us for life.

Friday, I had some nice friends here for lunch from Utah.

The Aunties came from Rangely for 2 days after, so we still had nice company. Then, they too were gone and took Cameron to the airport. Wow. The house was still and quiet. Everyone has abandoned me. I wandered through the rooms and not even the mouse is back.

I’ve finished my medicine wheel garden. Not all the planting as it takes a lot of plants (money) but I have time. When I checked on a peace pole, the lady offered to come with the Indian Society Members to perform a ceremony. No charge. I am so tickled.

I had an appointment with Urologist Dr. B. whom I had been to a few years ago. I couldn’t take any meds before driving 1 hr and 20 min. By the time I got there, I was in agony. The usual bloodpressure, vitals were taken. Dr. B. came in and after the cordials he looked at the CT scan and said that there were NO stones in the urethra. Only 2 small ones in the right kidney but they could easily get out if needed to. So? I asked. What is this pain? Classic symptoms of reduced urine flow, horrible, prolonged pain. Tiny, pink droplets. That does not mean stones? That’s right, he said. Well, I wanted to know, ‘WHAT is it?”

” I don’t know,’ he says. You need to go back to Dr. M. and find out where this is coming from. I can’t believe it! Back to square one! Where do I go? Whom do I see?

Last night, as I woke with pain again, I wondered whether this could be caused by scar tissue? I had this before, 10 years ago on my right side. Left over from a pediatric Ruptured Appendix surgery. These now, could be caused from the debulking surgery from Ovarian Cancer/Hysterectomy

I can feel the meds taking hold and numbing my brain and thoughts. I better stop before all sorts of nonsense appears.

Time’s up…

Posted on April 24, 2012 by admin

Although it seems long, these past couple of weeks went rather quickly. There was the usual laundry to do after my son left and things to straighten up. Having my schedule and life back felt pretty good, although the house was quiet and empty. No one calling a cheery ‘hello’ and I had no one to tell little newsy things to.

I couldn’t go walking because there was, still, this pain in my left pelvis. Whatever medication I tried, did not work and so I wandered the living room, the kitchen, the bath, bedroom and back because it’s all I knew to do.

Instead of having a nice, few weeks off before tests and CT scan, etc. I’ve been dealing with this ‘thing’. I’ve decide it is (probably) some remnants left from kidney stones trying to get out. It wouldn’t help to go to Urologist as I need to deal with cancer issue first. Not more tests and more x-rays into body. I finally figured out that if I took one Ibuprofen (600 mg) and one half morphine (5 mg) that I could function. I don’t like to take either one. Someone from my cancer support group told me to research medical marijuana.

There are many different ways one could choose to take it. I was surprised to find out how much it was used in the medical field. For depression, PTSD (Post Traumatic Stress Disorder). For chemo side effects, the nausea, the inability to eat, neuropathy, the horrible pain and all other co-hosts of this toxin. The side effects of the meds I am taking is not such good news.

It’s suggested to take marijuana at bed time so it can help repair while the body is trying to do this anyway. I may just really find out as much as I can and then decide. I am tired of pain. And, I can’t go walking as it starts its hellish descent and I have to stop, clutching my side and moaning. A couple of times, when I tried walking, I thought I couldn’t make it back home.

Meanwhile, I’ve also had my first Acupuncture. It was a pleasant experience. I realize that just one treatment won’t help much so I have 2 more before my CT scan. I am also taking 20,000 units of Vitamin D3 (at bed time) as recommended by a Naturopathic doctor. I am still trying to out run chemo.

Then, a terrible tragedy has come into the life of my very best friend. Another, had a massive stroke and fighting for life. I was thinking, that there are worse things than my cancer. More immediate.

As it is with life’s tapestry, weaving other threads into our day, there’s the happy news that Julio and Marie Ann are coming this Thursday. Our camino buddies. Julio called a few days ago, as they were boarding the train in Chicago to go to Yellowstone. “Are you still alright with kind invitation of us coming?” he asked. I responded in the affirmative. He also told me, that Marie Ann is saying that this country is soo big. Too big.

So, I am planning a few outings as they’re only here a few days. I need to cook ahead so we have something to eat as they’ll be late that Thursday. Cameron is coming in as well, so I pick him up first at the airport. (Must not forget to go to have several blood tests done that morning.)

Hopefully the aunts can come, as well as other friends who have been so supportive, loving and kind. The timing is good as I’ll have the CT scan and appointment with Oncologist May 2nd. Then we’ll have all the answers. Iwill ask Radiologist to concentrate on my left side. Maybe we can see what’s going on. If not, I guess I shall make appt with Urologist. (Julio and MarieAnn are leaving May 3rd.)

If tumor has not grown I will have another 2 mos.

Saturday, I have planned a little Fiesta for my friends.

Different days

Posted on April 8, 2012 by admin

Even though surgery is off the table and I am very relieved not having to got through all of that, the chemo boogie-man is still hovering close by. But, those fangs are not as sharp and big as they were.

The house is still since Cameron’s departure. Having lived alone for so long, it’s rather different having someone here. I have my old schedule back and my odd time keeping.

Since I nearly had one months before having bloodwork, CT scan, etc. I figured I deserved some time off and perhaps go to a cancer retreat. Get acupuncture, breathing techniques, raw food-juicing, emotional cleansing as well just in case there were unknown remnants. etc. I’d found a place in California. Sonoma Valley. Burbling brook, bird singing, lovely surroundings and peaceful. I envisioned myself on long hikes through a tall tree forest, doing all the above described things. I’d send an e-mail for more info and the owner called. After hearing some of my story, he was going to lower the rates so I could afford it. I’d also found a reasonable air fare and was so excited and looking forward to this marvelous respite… when…. I had to cancel everything. Sudden onslaught of a sharp, poking pain which nearly had me doubling over. I was hoping it would ‘just go away.’ But days later when it became worse not better I was scared and canceled the ticket, the retreat, not knowing what it was.

I finally had to go and seek medical help . From my back, to my side, to my lower front pelvic region. I would start out with Ibuprofen, then when that did not help at all, called the office to request stronger pain meds. Well, he called in some pills that made my head rummy and dizzy but did nothing for the pain. By Thursday, all day and through the night I thought I’d have to wake Cameron to take me to the Emergency room but then, held off because that would cost several thousand dollars. Friday morning, I called my GYN’s office to try to see him but discovered that they don’t work on that day. So, I called my Dr. They booked me for the afternoon. Those hours stretched painfully before me but finally I got to go.

Examination, Urin sample, blood test, including CA 125. I had shown doc the written order from my oncologist and asked if I could do these tests out of his office, the end of the month. He agreed but then ordered the very same tests!! I said, we didn’t need those now since I was going to have them the end of April. He answered, ‘well, we’ll just do them again’. This is the same Dr., who, a few weeks ago was trying to save Medicare’s money when Dr, D. ordered a CA 125. Go figure.

I had a thoughrough examination, including rectal which was a total surprise and produced groans and eye-rolling from me. Well. He didn’t know. Could be Diverticolitis. Painful, chronic attacks. I said ‘what??!’ I wouldn’t have anything I couldn’t spell, I told him. Or, it could be some infection, or if the pain won’t go away, it could be the cancer. He wrote a prescription for infection control. Cameron picked it up and when I saw the one page and a half warning, I was queasy.

I researched Diverticulitis and it stated: ‘Caused by a total ‘American based Diet’ of too much meat, too little fiber, not enough vegetables and chronic constipation.‘ I laughed out loud. Come on!! I’ve been on a Vegan lifestyle (except for a few times) for 2 years now and with detoxing I had enough roughage to fill Noah’s Arch. Had he not listened at all? I decided, right then and there that this would not be what I had. I was a little un-easy about the cancer since there are some other tumors in there, they just have not lit up the PET.

Then I remembered, when I had the Lithotripsy a couple of years ago, to blast way kidney stones. A couple remained on the bottom of my left kidney, they could not go up and then out. The pain I remembered as being the same excrutiating, writhing thing. I also remembered that the Emergency room Doctor, prescribed Flomax. I had thought that this was a med for males only but he said, no, it would make passing the stones a lot easier. Right he was. So. I searched and found the vial with some left. A little out-dated but I figured this was not Yohgurt. Sure enough by Sunday morning it was gone as sudden as it had appeared. What a total, happy relief.

Next day, I fell over the strung out garden hose and hit my knee and hurt my wrists. Just can’t have a day without something hurting or going on. Tiresome.

I was getting cabin fever as the weather was so unfriendly. High winds started up to 35-40 mph and I couldn’t walk. A friend called to ask if I would drive to Crested Butte with her. Sure, I said. Had not been there for years. That broke up the day.

Now, I try to keep busy until my appointment May 2nd. If tumor is table as well I won’t have to do anything for another 2 month. My life could be measured in 2-months increments. I’m planning a road trip with friends to Santa Fe.

Now it’s Easter Weekend. Inspite of this roller coaster ride, the terror and fears about surgery and chemo. The ever present cancer I feel at peace. The rising of CA 125 has stopped. This is my gift from God. Also, from my hard work. Happy Easter.

Dr. Very Nice

Posted on March 28, 2012 by admin

After the many days waiting for this appointment, it finally came. A very windy day but we made to Grand Junction. Cameron accompanied me for some ‘hand-holding’ if need be and to take notes.

Meanwhile, I had bought a book, Embrace, Release, Heal,’ written by a Grand Junction woman, who had horrible cancer with 3 recurrences. This is an amazing journey and after I read what she did and her decision to do Alternate and why, I felt totally re-invigorated. She spoke to me. She had the same fears, doubts and terrors….. and then, she had success and despite that her doctors/oncologist and other people tried to dissuade her, ridiculed her, she stayed the course. I applaud her. She made it. She’s well, for the time being.

After filling out some more paperwork we sat and waited. Wasn’t too long before I was called and went to the examination room. The nurse took my vitals and my bloodpressure was up a bit but nothing like in Denver (or Montrose Cancer Center.) I attribute this to two things. First, Cameron was with me and second, I have been at this Pavilion so many times, I should own a corner of it. The staff is very nice and ‘upstairs,’ know me by name. Dr. M. came in, introduced herself and we all shook hands. She told us that Dr. D. had not send certain scans (??) and they had called and asked for them.

To explain what I am dealing with, she drew a rough sketch of the body ( appologizing for lack of artistry) with the aorta running through. In the pelvic region she drew a cluster of lymph nodes next to it. Very neatly, tightly attached to the aorta. These I had not been aware of. You mean there’s more??

She told us, why surgery would not work. Even if they could get to the 5.5 cm ‘problem node’ and extract a portion, we’d still have to deal with the other ones and they simply cannot be excised out. ‘Cancer is a chronic illness‘, she informed us, ‘Similar to Diabetes.’

Even though she was aware that I did not like chemo, yet it was the only available option. Cyberknife would not work due to that cluster and one other area in pelvis. Chemo had worked well for me before, she said. She had me describe the after effects. She told me, that we could do the schedule differently. Instead of throwing the whole works at me in one sitting, we could do a lower dose over one week’s time and have 3 weeks off. At the same time, add anti-nausea meds into the IV, so I could or would tolerate it better. She told me of another patient, who’s abit older than I, who has tolerated this and functions quite well. Radiation would not work either, due to where it all was and the intestines would be damaged greatly.

She asked me how I ended up in Montrose. I’d told her, she didn’t have that much time. She laughed and said, take short route. I gave her the highlights. I felt so comfortable with this nice, kind spoken Doctor, that I’d told her what I was taking and what I was doing for myself. She did not even blink. I went a bit further and added that I take Tumeric/Curcumin, etc. No ridicule, no exclamation of ‘this is nothing but quackery’. Oh, I like her, I thought. She even gave me the name of a Naturopathic Doctor, in Ridgway, whom I can consult about the Vitamin C, Iscador and other vials that I had brought from Germany and had been sitting in my fridge ever since.

She asked, if anyone had ever suggested genetic testing? No, I said, never even came to mind. Well, since I have quite a line-up of family members with a cancer history on both sides, it would be feasible to have one. For my children and grandchildren. To find out if there’s a genetic reason. Medicare may not pay for this pricey test but we’ll go ahead and do this. I’ve had some ‘Angel’ friends visit me and others who send a check to help out with these expenses and bills that keep coming. Their love and kindness had me in tears.

I also told her about this new, piercing pain on the left side, in my abdomen. That one has me disturbed enough to mention it. I am taking my Ibuprofen 600 mg but sometimes, that’s not even touching it. I have stronger stuff but hesitate to take this as it will cause constipation and I feel so ‘rummy’ and fuzzy. I don’t like ‘drugs’

She said, that I could get just as many years out of this chemo.. and if ‘it’ came back, well we’d treat it again although the time span of remission in between would be closer together. Hey, I thought, ‘ Thank you, God’, I’ll take 10 years, to be with my family, to travel a little, to see the beauty of this world.’ I’ve made peace with my cancer and I will do things to help get better as this is another wake up call (unless it’s GENETIC) to change things in my life. No matter what its origin, now that it is here, again, I’ll try to deal with it as best and as gracious as I can.

Dr. M. suggested that we do a series of blood work, including genetic testing and a new CT scan as well as another CA 125. (Ovarian cancer marker).

When we were leaving, I took her hand and thanked her for being so kind, gave her a spontaneous hug and promptly burst into tears. I wasn’t used to kindess. It’s unsettling.

I felt a huge weight lifting. I finally had a plan. We were doing things. I was really relieved not to be cut open and have my intestines rearranged and to deal with the pain and accompanying discomfort.

I’m not sure, whether we’ll travel to Huntsman now. We have not heard from them and what could they tell me differently? I think, I’ll just stop resisiting and wrap my mind around this and work on being accepting. Camino NOT chemo. Well, family and friends (and myself) I sure tried. You’d have to say that. I gave it a good run. And, of course, I will seek alternate advice until all these appointments. I still have a little time until then. Hope does spring eternal.

Yesterday, the phone rang and, would you believe it was Dr. M’s office (already!) to schedule these bloodtests for May 2nd. Until then, I have time to work on me with a last ditch effort, to detox, take stuff, do acupuncture, cleansing and whatever else I can do. Maybe, just maybe… it’ll disappear.

I was telling Cameron, that this thought occured to me: When I was on the camino and walked up to the cross, offering that the tumor be taken and then when this did not happen, I failed to see that I’d already gotten my miracle. Although the tumor was not ‘gone’, it has stopped growing since October. I mean, I have 3 PET and one CT to proof this. The markers have gone down. I am grateful.

I want to go away for a few days. Have a vacation from cancer and all this intense talk and research and accomapying fear. I am calm now and feel peaceful. Another gift.

One day, like the next…

Posted on March 20, 2012 by admin

Sometimes, I can’t remember what day it is. They all seem to blend in to pretty much the sameness. Make breakfast, then again for Cameron. Clean a little, run errands. Shop for groceries (often). Bring them home, then prep, chop cook or not. Make salads.

Cameron is busy with his work and then calling, researching, answering calls, talking to Medical Professionals.

Meanwhile, I’ve acquired an odd pain which has me puzzled and Doc doesn’t know either. Since I’ve just had so many (and expensive) scans, I’ll not have another. He called in a new prescription which is a little stronger than Ibuprofen.

Last Saturday, we went to a friend’s house to photograph all the items I am selling to help defray cost of this cancer and treatment. We have posted the pictures on Facebook and the Facebook caminonotchemo page.

Buy Gorgeous Decor, Help Pay for Treatment!

Still researching prices. Will put some on eBay. Ask!

By: Camino Not Chemo

Photos: 145

Friends have been overwhelmingly generous. With Organic veggie presents and money, discreetly placed in envelopes, which allows me to ‘save face’.

So now, we wait. For the appointment on March 26th, in Grand Junction with Oncologist. Then, hopefully, we hear from Jon Huntsman Clinic, in Salt Lake City, soon.

The great thing about going there, is, that we have friends who have offered their home and we can stay while I am being examined, questioned and hopefully have a good solution.

This is getting really old. Not knowing. Not doing, and now having pain. Trying very hard to be patient, to be up-beat but once in awhile, like in the darkest hour of the night, I was caught in a weeping storm. I have nightmares.

Flurry of e-mails

Posted on January 25, 2012 by admin

Since the last 12 days and most them of them without any word from Denver camp nor Montrose, I had Dr. D’s words running incessantly around my head. ‘Maybe we can’t remove this tumor surgically.’ I was in a deep shock. So, how else can it be removed? She did not address this issue. I imagine, perhaps it would be chemo and for good measure, radiation.

I had a call to my doc, here, well, we already went through all of that. I even called again. No answer. I felt totally alone in trying to figure out what to do with this huge problem.

Several e-mails were sent back and forth to Professor in Germany, who was my only link. He replied at once, every time.

I’d sent medical records and scan results. He answered promptly and was concerned, as the tumor had grown and did not see why we had to do another, expensive P.E.T. When I told Professor that Dr. D had stated she ‘may’ not be able to remove tumor, his next e-mail said, ‘if this is so, then to come Wuerzburg. I’ll be here for you.’

Denver co-ordinator had called Thursday afternoon to schedule a P.E.T scan, in Denver, for the following Wednesday morning. I was totally stressed out, how on earth could I manage to get there, again. Who could drive? Where to stay? How to get around? I don’t have unlimited funds. I’d spend over $350.00 on the last, useless trip. I asked, if I could have this done in Grand Junction. I said, I don’t live around the corner and to expect me to come there for a scan and then be told she may not be able to do surgery, was unreasonable. Unless they could tell me, why a P.E.T in Denver was more sophisticated than the one in Grand Junction. (I had called my son while coordinator was conferring with doc and he led me through the mental maze.)

She called back to tell me that this was alright and they’ll set it up. My blood pressure has been really high with all these stressful talks, then e-mails to figure out, if I had to go to Germany, where I could convalesce? How much would that surgery cost? All my adult life I’d paid into Social Security, to have some help in my ‘old age’. Now, that I was finally old enough for Medicare, I’d have to pay 100% over there? NOT fair. Not fair at all. But, to even have someone offer this kind of help has me very emotional. In one e-mail, he wrote that he could not open the disc and so could not look at it. But, he was sure he could do surgery.

(Remember? Dr. D. had not looked at it either but cautioned, that she may not.) I’m not giving up on her because she is good. I need good, or, as they said, ‘the best’.

Yesterday morning, my friends, Monika and Inge B. and I, drove to Grand Junction. They’ve been with me, for every P.E.T scan, starting nearly 2 years ago. It had been snowing when we left. For a large part of the way, there was very thick fog. I was so very thankful that I did not have to go to Denver, over those passes. I would’ve stressed out a lot more.

The ladies at the reception recognized me and were glad to see me, although not glad (she said) that I had to be back. The nurse, who inserted the catheder, also remembered me and said, ‘How nice to see you again. You’re just like a breath of fresh air when you come.’ I had to be poked 3x before it my veine finally agreed. She also gave me a large cup of (nasty tasting) thick, contrast. Then, to lay down, resting in the big chair. Curtains drawn all around. You can’t read. You can’t talk. Just laying there. For nearly an hour. That’s such a long time and feels like punishment for me. I’d tried to visualize the tumor hanging in there, dried up. This would be so ideal compared to what I’d be facing.

Finally, bathroom break and then into the room with the big, doughnut shaped, scan machine. At least, they’re not closed in any more, like those narrow coffin-ones they had, even just 2 years ago. Both arms go over the head and are strapped down. Then, mid section is strapped in. (I asked, if this was a straight jacket? Was I in the right place. ha.)

Then, the scan began. Of course, right away, my nose itched. Can’t scratch. Have to lie perfectly still. Then, my eye itched. I’ve tried very hard to ignore all those suddenly, itching body parts. It seemed like a long, long time. Finally the movement to get out of the scan. The nice radiologist, who has done my last 3 scans, assured me that he would give me extra discs, so I would not be anywhere without them. Of course, he can’t tell me what he saw.

My friends were outside waiting and after I received the discs we left. It’s a good place to go and I was not stressed at all. I know, it’s because it’s not so huge and impersonal like Denver University. It’s also because I know these people and they know me.

My doc had finally called Monday eve. He appologized as he was at the hospital all week. He told me all my decisions were really good ones, and ‘right on’ and to involve Professor, as well. He also told me, he would call me at once, today, when he received P.E.T result.

So. Pilgrims. Within a few hours or tomorrow, I should know where to go. Denver or Wuerzburg. My son has agreed to come with me, no matter where I go. My daughter, who has family and can’t leave, is close with support, love and keeping the home front.

( I am selling some ‘stuff’ to finance at least the ticket.) I try not to think about this huge obstacle of money.

Well, here I go…

Posted on January 6, 2012 by admin

After some bloody, scary days last week I’d found out I was detoxing too much and my colon was ‘squeaky’ clean. Stopped doing that and things went away. Still had to go to my appointment and since I was there, I had another CA 125 (ovarian cancer blood test).

I was really, really hoping it had settled downward. But, yesterday’s result was such that I have to hasten to have the tumor removed. In only one months it climbed another 9 points.

Everything is lined up for the trip and I have a feeling that, maybe I should take some more things with me, which I would need, in preparation to stay. I think, Dr. D. may schedule surgery fairly soon. I am working very hard to do a Brain change for these very different treatments than I had envisioned for myself, for so long and stay positive.

When I saw my Doc, I was telling him about meeting with Dr. Giggles and that we’re not a good fit and how insensitive, rude and condescending he was, inspite his Wall-Diplomas, or because of them.

I was also telling him of the compassionate, kind Professor in Germany, whom I had only seen twice. He must’ve heard something as he told me, that I was in the best shape to have this surgery now. We talked about surgery and I jokingly said that I hoped there would be someone there to hold my colon while she went all the way back in there, he seriously replied, oh yes. There will be a resident doing that.’ Wow. That’s a picture I could’ve done without. He walked with me to the Front desk and gave me medical copies to take to Denver and then said, You look very nice and healthy’. I replied ‘ in Europe they call this the blooming life’. So ironic and sad that my numbers have gone up when I feel (and look) so well. No swollen lymphnodes. No pain, which is good but realistically, this will change. I hope they have good drugs.

When Doc called to give me the result, he ended by saying again, that I am in very good shape and he was very optimistic about the outcome. I suppose, now that ‘ve raised him for 10 years, he’s starting to ‘get it’. He has become a little more compassionate.

I will drive to Grand Junction on Tuesday so we can leave early for our 5+ hr drive over two mountain passes and hope the weather will keep being as good as it is now. Carrie wanted to come along and I said, of course she can, she’s my little soldier.

Marriott Hotel is close to University and offers a discount for patients. Also, free shuttle to Hospital and anywhere within 5 miles, to shop or restaurants. I don’t think I have time nor money to shop.

If I have to stay, Bonnie and Jayne will come to help pull me through and wait until I’m done. Got to have someone on the other side of OP cheering me on .

I will try to inform everyone, once I consult with both doctors. Wish me well. Say a little prayer.

Thumbscrews

Posted on December 1, 2011 by admin

Flying to Denver

After many days of amazing peace and tranquility inspite of negative (or medical ‘positive’) news I went to Colorado Cyberknife in Denver. A good friend had secured buddy passes to fly there rather than our driving over snow-packed passes and enduring long hours. We would’ve spent more on gas. I remarked how rich I felt just to fly to Denver, overnight, and maybe even get a bit of shopping in.

The Hotel shuttle picked us up and whisked us away. Barely put our stuff into the room and set off by shuttle service that took us to the nearest shopping center. (Nice Russian driver, married to German wife.) I spent very little.

The beds were a dream and I slept really well, until… this sound woke me at 3:11 a.m. …. snoring! For a second I thought I was back on the camino. I clapped my hands a couple of times and that took care of it.

The transportation to Lafayette was a quite a problem. There are no buses, except to get a cab to Bus station, get on, transfer twice and then it would take awhile to drive those 26 miles and then walk back to Cyberknife address. Renting a car was out of the question as I would not be able to navigate through Denver with all these crazy, speeding drivers, trucks and everything else. Especially, not knowing where I’d be going. My friend couldn’t drive as she’d had surgery 2 weeks ago. Neither of us wanted any added stress and so we took a cab.

The driver had to use his GPS to find it as well. Cyberknife is a couple of miles outside Lafayette. Nothing else there. We wondered how other people would get there? My appointment was 2 hrs away. Luckily, we’d stopped at a German deli and brought food. The recepionist was nice enough to make us tea. There are no stores or anything close by.

Cyberknife Disappointment

The nurse took us to the examination room, took blood pressure (was up a bit and I suppose I was a bit anxious, or, as the nurse said “because you are here”. I filled out pages of medical forms and possible problems, which went fast because I don’t have ANY, except for the little c. I don’t want to name it the BIG C since I think I am bigger than it.

More manageable that way too.

The oncologist, Dr. S., came and we started talking. He asked me what I knew about this tumor. I told him that, according to my doc it was a cancerous lymphnode, now the size of a golf ball.

“What!? What?” he exclaimed, startled. “I don’t remember anything like that.” He turned his monitor on and there was my internal picture of organs, etc. Then, there it was. Colored in primary red. The Thingy, the cancer, the nodule, the beast. It seemed strange that this was really inside of me. I viewed it with curious detachment. But it was not a GOLF BALL. Not this round mass which I’d envisioned all this time. It’s smaller and rectangular and sits with squatters rights next to the aorta, feeding. Although that feast quite curtailed, lately. Starving it.

The risks are the same as with conventional surgery. The lower bowels are in the way to a straight shot to the back of the abdomen, to the spine. It would be a bit tricky but could be done, if not a desired 3-4 treatments but lowering radiation strength and having 10 treatments instead so as to not damage my bowels. Non-invasive and pain-free. This is the plus side. On the other side, it cannot detect anything else. My PET scan was clean in any other way, I said.

I asked Dr. S. about metronomic chemo, or RCT. He had not heard of either but was willing to check into it.

There could be recurrence and there could be this and there could be that. I would be treated as an outpatient. That means I’d have to get a hotel, nearby and for 10 days go there for 30 min a day. Then, nothing else to do in this ‘nowhereness’. Well, I guess I could walk unless the icy northwinds blow.

Survival for the Wealthy

I had researched and found another natural treatment clinic, in Arizona. The cost? A mere pittance. ONLY $8000 per week with a minimum of 3 weeks plus it’s out patient so there’s an added $1500 for an apartment. So, there I realized that all these gentler, healthier options are out of reach and felt defeated in that desire. Although, ther’s still Bad Mergentheim in Germany. Lot less and that includes plane fare.

I have not heard anything from my local doc. There was to be this meeting with medical professionals, discussing my case and giving recommendations. I had called to ask about CA 125 date. No call back. Nothing. I feel very much alone in this search and all the questions I would have. I called again and was told that Dr. had been out of town and was on an emergency call. Then, I received a call from local cancer center, telling me I’d missed my appointment. ??? I said, I have not been informed of one. We rescheduled for next week. This is on an information gathering only. I want to be informed of ALL options and newer technology and/or treatments. I want the BEST because I AM WORTH it.

Being on this poverty level has now taught me, that this is what it is. If you’re poor, you’re screwed. You have to do what mainstream says or live (die?) with the consequences.

I was not very peaceful nor tranquil yesterday. I feel pressured by my well-meaning friends, who called in a steady stream, after my return from Denver, to ask “What are you going to do? What have you decided?” I had said, time and time again, I am going to make a decision AFTER Christmas. That I was still researching and working as hard as I can to help myself. So. I will tell them, PLEASE. No more questions. Stop asking.

I had sent Dr. Professor Koebe (in Germany) an e-mail, asking for his advice. As usual, his reply was fast and kind. He congratulated me on my ‘fabulous spirit’ and to keep that one up. He also put another, seemingly disappointing outcome into perspective by stating: “You don’t know how things were and don’t know what may have happened and what it was before you went to the cross.” Ohh, that soothed my spirit again. His advice is still, open up and go in there after it, examine and take care of it.

Other people have been working on my behalf and offered advice and suggestions. I will follow up every lead, gratefully.

Next decision would be, where to have surgery.

Brain freeze

Posted on November 24, 2011 by admin

Can I trust my brain to make the right decision? Or, does it beat a path to least resistance? I think I’ve made good decisions over the past few years. I’ve tried to make the proper ethical, moral choices. In emergency situations, I did act and react with good speed and choice of treatment.

It’s amazing what one can learn when we start to educate ourselves and do not allow for pre-chewed ideas and opinions to cloud our minds.

Although I respect the genius of the cancer cell; it’s clever deception to sneak past the vigilant immune system, I do not want to get comfortable with it. Certain sources suggest that one should make peace with various, chronic illnesses. I feel that if I do this, I’ll become complacent. What with all this respect and mutual admiration, feelings of peace and light I am a complice and co-dependent in my own cell problem. Like a snake charmer who concentrates soley on the snake.

I shook myself free of this warm, fuzzy peace with cancer feeling and declared a serious Tumor Hunt. I have a few sneaky tricks up my sleeve as well to circumvent that tough, little outer wall of the C cell and obliterate it. So there. This includes different measures at the time being. Holistic measures until I have assimilated all information, main stream medicine as well. It also includes very different culinary tastes.

Starting in the morning, upon rising, I take 3 enzyme tablets. For breakfast, 1 cup cottage cheese with 5 Tbsp Flax seed oil (from Johanna Budwig, German bio chemist who states that this will carry vital oxygen to the cells.) Add 1 tsp ground flax seeds and whip it into a frenzy to combine. To hide the oily-cheesy taste, I add frozen blueberries or other berries and this makes it tolerable and looks like a nice smoothie. It is very, very filling and I have to work to get it all down.

Then, I continue with the ‘Hufeland Clinic’ protocol, plus Tumeric, Curcumin, Vitamins: C-E-and B12, followed by the metals: iron, zinc, magnesium, copper, etc. More recently, added visits to Hyperbaric oxygen chamber.

After 1 hour I continue with juicing. Mostly carrot with apple and add ‘Green Pro’. Foul tasting and looking but filled with important chlorophyllic properties. I take fermented wheat germ which looks like dirt and when you add water/juice, it tastes like sweet mud. Yuk. Have to try hard not to get nauseous. But… this is not business as usual. I am working with everything I have to help myself so as not having to be ‘filet’ and filled with Toxins and poision.

Radiation Oncology Sydney Cancer Center studied 5 year survival rates of 22 types of cancer in the U.S.A and Australia. They studied 154,971 Americans with cancer, age 20 and older that were treated with chemo therapy. Only 3,306 lived to the 5 year mark. Study results: The overall contribution and adjuvant cytotoxic chemotherapy to 5 yr survival in adults was estimated to be 2.3% in Australia and 2.1 % in the U.S.A.

Cancer is a message. It wants to show you that something is running off the tracks in your life. ‘You go ahead”, said the soul to the body “because it’s not listening to me.’ “Alright’, replied the body, I will become ill, then he will have time for me.’ Although how this translates into children, even babies having cancer, I don’t know.

Another study, in Germany: Group A- 389 patients who underwent conventional therapy . (41.38 %)

Group B-patients who denied conventional therapy, including patients that could not be helped w conventional therapy methods. 312 patients (26.7%)

Group C: patients who did not even appear to consult and who’s fate could not be followed: 312 patients (33.0%

After 8 years, group A -only 102 (26.22% patients were alive with conventional therapy.

Group B- after 8 years, 183 were alive (85.11%) these were treated ONLY with Biological Conflict Therapy.

This is part of a treatment used in Germany. Brain scan is used to identify the spot, which highlights where those signals come from ad being sent and then this exact spot is treated with above mentioned thearpy. They also use a whole battery of holistic ingredients. ( Dr. Andreas Puttich, Darmststadt.)

Prof. Dr. Charles Mathe, leading Oncologist and Specialist for Oncology, in Paris, France stated openly: If I were to have cancer, I would not allow myself to be treated in conventional cancer centers. Only those cancer patients will have a chance to survive, if they stay away as far as possible. (Scientific Medicines Nouvelles, Paris.)

NOW, can you appreciate my dilemma??

Futile questions

Posted on November 21, 2011 by admin

Yesterday, as I was walking, I reflected on the past 3 years. I was wondering, had my symptoms been recognized and not so easily dismissed, would it have made a difference? Instead of scrambling to find a treatment now and looking at so many difficult choices, not to mention extreme financial hardship, could I have had just a nice, peaceful, healthy life?

Three years ago, I had a backache. I ignored it for awhile, then it became worse. I finally went to doc. Told him my right kidney hurt. He couldn’t find anything. Went to another, who diagnosed some calcification in my “tailbone”. Still same pain. Went to doc again and was referred to surgical center to have a series of shots into my spine. I’ve never felt such pain. But, after one ($1800) shot I did not return. Did not help. I said, my right kidney hurts. I felt I was being passed around like an old shoe.

This went on for 18 mos. Then I had additional bladder pains and frequent bathroom visits. As many as 15x a day. My doc sent me to Urologist. He did a test, inserting the scope without local anesthesia. It hurt so bad I came off the table. His diagnosis was “Interstitial Cystitis”. A chronic disease where bladder membrane is “eaten” away. Medicine cost, per month, $450.00. It was a good thing I could not afford that. Pain persisted. Made my own appointment with a urologist in Grand Junction. They said my bladder was fine and healthy and after (finally) an x-ray, it turned out I had kidney stones. Removed by Lithotripsy as an Outpatient and still $16.000.00

Next. Many different symptoms. Hair falling out, grainy eyes, swallowing difficulty, heart palpitation just to name a few. Doc said, nothing the matter except “old age”. My daughter worked for an oncologist in Alabama who diagnosed a thyroid problem just from these symptoms. I insisted on a test. The doc did agree and then called and said “It’s Normal.” I said so was my cancer test. (Ovarian, 10 yrs ago. No one listened then either.) Base number is different than what is still used by many doctors. That’s why it shows normal; when it is not. All symptoms disappeared with a small dose.

Next: While in Seattle visiting my son for Christmas, I had a severe cough and spit blood. I thought, it was due to climate change and harsh cough. Ignored it for the time I was there. Came home and it continued. Upon rising I had so much mucus I was afraid it would strangle me. Scared me.

Back to doc, who listened to my lungs, knocked on the back a few times and said, they sound clear, but did send me across the street, to Ear, Nose and Throat doc to check. He did put a scope down my throat and said I had an increased mucus production. I questioned that, since this had never happened before. I told them that I did not agree with this. ( I believe this is when my lung tumor started. The cellular change.) When there’s cancer in ones background, would not a test be a good idea? We rely on the medical professionals to advice us.

Meanwhile, I was dealing with Plantars’ Fasciitis, which was hell in itself.

I was dealing with very stressful family issues. My whole body was falling apart.

Next. I was sitting on the couch, watching T.V. when I absentmindedly scratched my armpit. I noticed my lymphnodes were swollen. Well. I didn’t want to run to doc again, since I had the feeling I was thought of as hypochondriac. After a few days though, of increased swelling, I did make appointment. He looked and touched and said it was “barely” noticeable. Sent me to another doc, who said the same. Sent me home. My CA 125 (cancer blood test) was steadily creeping up.

I FELT that something was wrong and would not be quiet. It was on one of those appointments, when I asked the doc if he ever had someone say that their blood was singing, that he paid attention. Immediate blood test which result was such that he told me to rush to the hospital for another test. Scared the beejeezus out of me, as they were saying that it could be a blood clot, which could kill me. (Thanks for the nice way of telling a patient.) It wasn’t. Then he said, “Well, we’ll just go ahead and do a P.E.T scan so we know once and for all.” Just to appease me.

I did and that was the beginning of this present nightmare. P.E.T showed 3 tumors. One in abdomen (gone with lifestyle changes, never re-appeared.) Lung tumor, since removed with VATS, and now dealing with this last one.

Now I have Lymphoma stage IV. (is this a Roman 4?) Although I have not have had any of those symptoms. (Swelling has not re-appeared , except once or twice, since I’ve changed lifestyle.)

O.K. I got that off my chest and now I deal with whatever I must but I will have a say in my treatment of it.

Moonwater

Posted on November 17, 2011 by admin

I went about my business yesterday while the back of my mind was listening to the ringing of the phone. Somehow I knew it would be ‘Hiob’s’ news. That’s what we call bad news in German. Hiob’s Botschaft. Then, there it was and I knew who it was before I picked up.

In a clinical voice, devoid of emotion my Doc told me that the tumor was still there and grown to the size of a golf ball. (Cruz del Ferro did not fullfil obligation.) Julio had written a very nice card in which he stated that cruz del Ferro must fullfil obligation and future must be encouraging. Maybe would be a good idea long term pact requesting luck for a couple of decades. This is what I was thinking about, all the way to Grand Junction to have my P.E.T scan.

Doctor also said he would get me in touch with a noted Oncologist, here, so I could ask him questions. I’d wanted to know about metronomic chemo, or RCT regional cancer treatment/chemo. He had not heard of this as he’s not treating cancer patients anymore. Well, that was new to me, too. I told him I would meet and listen. I do want to know all my options.

Forget about the ‘New Hope Forever Center’ in Scottsdale, AZ. They called back with lightening speed and whooed me with soothing voice, to come. I was mesmerized until I heard the cost. A 12 day stay would cost $19000.00 dollars. Hard cash. (Although there are Financing companies available.) I have become a HOT commodity. It’s almost like ‘Moonwater.’ Going to the moon to harvest rare, healing water. They did, however offer to look at my scans, ect and advice what they would recommend, free of charge.

What to do? What to do. So many choices, still. I know I’ve stated that I had given up the idea of Cyberknife treatment but that was before.

Now that it is cold, scary reality once more, I am really chicken to the idea of pain. I’m going back to my original question: Why would I NOT want this? Non-invasive treatment?

Conflicting thoughts are still clamoring to be heard about natural, holistic treatments. Not to have my body polluted with poision. Of course, in all of this there are the costs to consider.

Doc said, that the Board would meet and review my case. This board is set up of Oncologist, Radiologist, Gynecologist (from ovarian cancer time) himself and some others. They will let me know their recommendations. I’m already thinking, how would I or could I argue against so many, learned men? However, I have to stay true to myself and not be brow beat into a quick decision. Doc said, not to wait too long now. Not to miss this golden time, or to wait until I had painful symptoms.

So. Now comes my next Camino. Steep, mental hills I have to climb. No one can help with final decison. I can weigh, I can throw ideas back and forth and still won’t know to 100% certainty, if the one I choose is the RIGHT ONE.

If there are any out there with opinions or ideas, that do not take up a lot of precious time. I am more than willing to listen.

Meanwhile, I will take advantage of a promised, beautiful day and drive to Ouray where I will hike up to a waterfall and gorgeous scenery. To sit and to think.

Two days to go..

Posted on November 13, 2011 by admin

As I am waiting on P.E.T scan appointment I’ve been very busy researching my options.

Time is somewhat of essence now and no more playing with it, nor running away. There’s a wealth of information to wade through. Family and friends have been helping to find possible solutions. So many different approaches and everyone claiming theirs is best. Cancer, especially Lymphoma stage 4 as they claim, does not leave a lot of room for erroneous trials. I still do not have any of those symptoms.

I have had an offer for a holistic treatment, handed down by many generations from Shaman’s. Even for free. A most touching and generous offer. This person would even come to my home., or have me at theirs, or even go to Shaman.

In the end I must decide. That is a very scary thing to do. What if it’s the wrong decision? Should I have done anything different? I feel very much alone in this. Uncharted waters. So far, I’ve not had a strong feeling that I would be on the wrong track. So far, I’ve not freaked out. I am not trembling with fear as I have at previous times when results had increased. I am peaceful. Maybe this is what I brought back from the camino?

I have started on a new supplement, recommended by a trusted friend as well as the others I’m taking.

In yesterday’s mail, arrived an envelope from the Surgical Team. At first glance, I thought it was another bill and so it was with delight and joyful laughter that I read the card, which showed 3 letters on front -‘WOW’. Opening it, there was congratulatory sentiments over my accomplished camino miles and bravo’s to keep it up. ( I will bring them my wonderful Pumpkin- raisin- hazelnut-cranberry, low fat/low sugar, cookies.) Also, a lovely card from Julio and Marianne.

Going back to my research this morning, I’ve found a place in Scottsdale, AZ., called New Hope Unlimited. A different approach. A holistic approach under controlled circumstances with a huge medical team at one’s disposal. Combining traditional medicine with holistic but one is give a choice. This feels like a good decision. Tailor made for what I would like to have happen while my body is still ‘pristine’ without chemo/radiation and thus can respond readily. I am already on lifestyle ‘diet’. Now, we just have to find out if Medicare will pay?

Twilight Zone

Posted on November 8, 2011 by admin

Over the last few days, since my CA-125 bloodtest, I’ve been wondering about the result. Not stressing, more like being very curious.

Yesterday was doctor’s appointment. He wanted to know about my camino hike and said what a tremendous accomplishment that was. Then he showed me the paper with result, which was high. Another few points added to the fear scale.

I said, “Oh this just shows that there is more sugar in my blood.”

He just smiled but didn’t reply. Checked my lungs, which were clear. He noticed my weight and said I’d lost 8 pounds since May. I said I would hope so as I’d just walked nearly 500 miles. But, back to discussion as to what treatment.

I told him I did not want chemo. Should be the very last choice. He said that in his opinion I should have surgery. When I reminded him that the Denver specialist we consulted did not want to touch me without chemo, he assured me that we could find someone else. He was concerned about possible “seed pods” in the abdomen. He explained that P.E.T can’t “see” those and if they’d turned cancerous, I would be in a difficult place. Only through surgery could they look around and see other areas. Of course, this surgery would not be without dangers. The same is true, though, with Cyberknife or any other.

I asked if he would go “outside the box” with me and help me with alternate treatments. I still have about $500 worth of Iscador and other holistic meds I’d brought from Germany, and which have to be injected but ONLY by a Physician. He said he knew of 2 holistic docs in Ridgway. I said O.K. we’ll wait until P.E.T results and then I need to do something quickly. He said: “Inge, you really need to. This is cancer we’re dealing with.”

I told him that chemo had not done too well for my friend Phyllis, who died while I was on the camino. Different cancer but same effect, as for so many.

My blood pressure was up but I’d imagine it was due to anxiety. After my walk, it had dropped 10 points.

I’m scared but want to have ONE more chance before pumping poision or radiation inside and kill off half my cells and then experience those side effects. Once this is done, any holistic approach would be extremely difficult to remedy the situation. Of course, holistic means also very expensive.

I am still researching for places which have a different approach. There are quite a few choices.

I needed to breath and I needed to walk. I made a quick salad, a small sandwich, took a bottle of water, grabbed my poles, and drove up to the Black Canyon.

We’d had a week of rain, snow, gray and I couldn’t walk a lot. I drove in and parked my car. Snow-covered brush and canyon walls. Beautiful view, sun, and only a gentle breeze. I was the only person. I took my day pack, which was astoundingly light, my poles, and walked. I noticed soon that where I would’ve been slowing down or was out of breath, previously, after all, this is 10,000 feet. I just plowed through. It felt so good to just walk. Then, the familiar click-clack of my poles. Stillness, peace. I saw tracks in the snow from all sorts of wildlife. Rabbits and large tracks, probably elk.

I thought back to just a couple of months ago, when I walked and wondered what the camino would be like. Now, I was back looking around and noticing how similar the view and the absence of noise. I’d also noticed that I clipped that 1.3 miles in under 25 minutes.

I stopped at the picnic bench, brushed off the snow and had my lunch , I looked around and enjoyed the peacefulness. I walked up to the edge of the cliff and looked down. The Gunnison river was like a small glittering ribbon. The walls of the canyon looked like they had been dusted with powedered sugar. It is so very beautiful there.

I didn’t come home with any answers to the decision I have to make but it sure made me more peaceful. I won’t be able to go up there when it snows again as I won’t have the proper boots and the terrain will be too difficult to walk. But, there are plenty of nice trails close to town.

Now, meanwhile, waiting for P.E.T scan and those results. That’s the BIGGIE.

The Cutting Edge

Posted on August 30, 2011 by admin

Yesterday, late afternoon, my little buddy was here and we were just enjoying a movie and a sandwich when the phone rang and my ‘other’ reality interferred. Oncologist/Radiologist from Cyberknife asked to speak to me and then explained the following to me. (Very nice and patient Doctor.)

Seems that I am a candidate for this procedure. Seems it’s not quite that simple, yet again. Pro- there may be only 3-4 treatments necessary to get rid of that tumor. Con- there may be some damage to some areas due to location of that tumor. AND, I still may need chemo!

Conventional treatment: Surgery, would be more informative as they could check surrounding areas, IF there could be additional nodules, which then would be biopsied for positive/negative results. Then follow up with chemo for a better quality of life. (Sounds backward to use ‘quality’ in the same sentence with chemo.) Still not an easy choice. Still wondering which road to take? If, if, if.

I have to wonder again, WHY they did not take this lymph node out 10 year ago? I’ve had two surgeries within 2 weeks. That’s when they told me, afterward, IF this lymph node made any problems, it would be diffilcult to remove. (I had purchased a long, purple zipper which I’d put under my hospital gown , so when they’d took it off before surgery, they saw it laying on my belly. Message: You sew that in there for easier access. They had a good laugh about that.) So, now I’m stuck with this cancerous, enlarged lymph node, like some ugly souvernir and have to make these awfully hard decisions. ( Am I whining? Well. Sometimes I get to do this.)

Even though there were other health problems that came in rapid succession, I was always in gratitude and proclaimed, “As long as it’s Do-able.” It’s still do-able but in a more sinister way and it’s not leaving a lot of room for erroneous decisions.

There’s another choice: Cancer Centers. Closest one is in Phoenix. I have some good friends, living close by.

Before all of that, there’s still hope that some ‘miracle’ will happen and through this long walk on the Camino, my body will heal itself. Then, we do a P.E.T scan, bloodwork and SEE what happened. (Although the P.E.T does not show everything, either, I am told.)

I’ve been up since 4:00 A.M again and these thoughts are circling like big birds. (Sure hope they don’t turn into Vultures.)

Any medical voices out there that want to weigh in?

Critics weigh in…

Posted on August 12, 2011 by admin

WELCOME TO

OUR AGENCY

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TESTIMONIALS

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TRAVEL

NECESSITIES

Stockmarket feelings

Posted on August 10, 2011 by admin

When the call came, I wasn’t prepared. I can barely remember what all Doc said except that my cancer markers went up. Not just one or two points. Although not an exact science, we have relied on this for ten years. Now, I’m not so sure that I can outrun this ‘thing’. Time is not as abundant as a few months ago. My confidence is slipping and fear is raising its ugly head. My emotions have this Yo-Yo effect. Or, up-down like the stockmarket. (It did recover?) My best friend held me while we cried. I didn’t quite realize how much I had hoped for lower numbers until they were not.

My son said not to worry. We’ll find the best treatment and money. Friends rally and surround me with theit love and support. Even unknown facebook friends are right there with advice and encouragement.

Although I would be a good canditate for Cyberknife ( I still like the idea of no cutting, no pain best!) It seems that Medicare won’t pay for this treatment. They view this as experimental?? Really? Only ‘traditional radiation’ pay. If I had a Grandma, I’d have to sell her to cover these inflated costs. Should I research other ‘alternative options?’ Which one to pick? Which one is only smoke and mirrors? How can I make a reasonable decision when there’s molasses in my brain?

I have written an e-mail to German University. Not that I believe they’re better but so far, they’ve been cheaper. University of Heidelberg has a state of the art oncology-cyberknife center.

We still hang on to the thread of hope to ‘lose’ this 50 cent size tumor on the camino. I have enough time to do that.

Am I ungrateful in this ‘whining’? At least there are options. Many people don’t even get that much. Well, one thing for sure. I will have plenty of quality time to think about any and all of this when I walk the camino. There are still miracles out there. I’ve had two, ten years ago, within six month of each other. But, that’s another story.

For those of you who would like to know what this Cyberknife is all about.

rocky mountain cyberknife center

Can we talk?…

Posted on July 28, 2011 by admin

You will excuse my hurried post this morning. I’ve been up since 4:00 A.M. although surpised, somewhat, that I could sleep at all after the ‘not-so-new-news’. I am thankful to the powers that be, to give me peace of mind after the initial shaking and quaking. The running hither and fro with terror and flight of life feelings. After I’d told a friend, she suggested that, perhaps I had to ‘own’ the cancer to start to get better. I said, I ‘owned’ it last time and this time I’d just want to rent.

I thought, I may as well start my increased attention to the matter on hand. Coffee enema. I lost precious time while trying not to upset my ‘tender sensibilities.’ Yesterday came the push I needed. So. I boiled my (organic) coffee (with distilled) water the prescribed method and time. After it cooled I put it in the bag. Well, I’ll spare you the details. Let me just say, that the hosing is a piece of crap (no pun intended) and as I was laying there, being quietly pleased how well this was going, the coffee (four cups ) ran without interruption all over the bath room. Looked like a battlefield. Me included. After cleaning it up the first time, trooper that I am, I did it again with nearly the same results. Ninety minutes later, I am exhausted and it’s not even 7:00 A.M. Definitely need a new contraption. I am now preparing laundry!

This I must do for the next four weeks. I am committed and serious in doing all I can to avoid chemo/radiation. Inspite of a messy start, this is so much easier than having to do chemo which, by the way has the same bathroom results when you’re sick and everything within you wants to come out. God, that was sooo bad!!

Then, I had to hurry to get my first juicing in as I have to follow the schedule, every hour on the hour. Who would come and help? Need someone for shopping or prepping food. I promise I’ll do the enema’s myself.

Got to run.

Answers…

Posted on July 28, 2011 by admin

I need to order my thoughts before I try to put the kaleidoskope of thoughts down, following the phone call from Doc.

The explanation of the test would be long and in medical language. The slide that was done (and they’d stake their reputation on it) is, that it is cancer and as there is still that last tumor, near my spine, we need to proceed with a therapy and or treatment. Of course, the first thought was denial in some form. Maybe 50%. I don’t want it to be there, or, with all that I’m doing the tumor has regressed.

I forgot to ask about a ‘name’ and I forgot to ask if there’s a ‘stage’. (Maybe I don’t want to know until way down the road.)

The word ‘radiation’ surgery/chemo, nearly took my breath and I’ve begged off for a time, yet. I told my Doctor, I really want to do the camino first. He agrees that this would be a grand thing to do. I am doing so well that it is very difficult to perceive there’s anything traitorous going on in my body. This is the push that I needed to go ahead with Gerson’s therapy. Now, that the juicer is working and I have little else occupying my mind other than taking care of myself. Having my coffee in a different way.

There are still more tests on August 2nd and waiting for those answers. If camino and my faith in a higher power do not work, the next step would be plan ‘B’ and Cyberknife’. But before that, I want to have a scan to make very sure that there is actually something there. My thoughts right now are really like wild birds flying in every direction.

This, I know for sure. I am going on the Camino de Santiago and nothing will deterr me.

Calling to find out…

Posted on July 26, 2011 by admin

Against my earlier self-advice I did call Doc’s office yesterday and left a message with my question about test result. Of course, then I waited and jumped every time the phone rang. My reason was/is, that when I do know I need to have time to research my options and can’t wait until the last minute.

Finally, in the late afternoon I get a call from the nurse only to tell me that Dr. is out of the office as well as today and if he has not called by Thursday, to call back. Geez!! It’s been over two weeks. This whole thing is like a crap shoot.

I had a hard time, yesterday not eating ‘Kielbasa’. When I was at the grocery store, suddenly I absolutely craved a piece and imagined biting in to it with the fat running down my chin. Luckily, this only lasted a second or two and I was once again, sane. (Could be I’m missing some protein??) I don’t have to plan what to eat (or avoid) as I’m invited to a Veggie lunch. Just had a tall glass of wonderful carrot/apple juice, all the while imagining my cells jumping in this bright red, healthful ‘bath’, splashing and having a grand time. Sure makes one feel better right away. … and then, they rest on a tiny lounge chair wearing tiny sun glasses. haha (I swear there are no drugs involved.)

Waiting….

Posted on July 23, 2011 by admin

Phone calls are becoming more frequent with family and friends wanting to know the test results from the VATS. (Video Assisted Thoracic Surgery). The first result was incorrect and my Doctor ordered a new test from the Mayo Clinic. We know it is cancer. We just don’t know what ‘type’. What to call it. Give it a name. Well, I don’t want to name it. That would mean it’s going to hang around like a pet.

Meanwhile I also received my new ‘Champion Juicer’. Have to figure out how to work it. Bought 25 lbs of carrots. (Nearly the weight of my back pack!) That’s a lot of juice and I’m supposed to drink 8 oz every hour. (I wonder how quickly I’ll get tired of the taste? )Means, I can’t leave home. By the time I start and clean it up, here I go again. I think, I need to move someone in to help me with all this stuff. Then, the assortment of Vitamins and preparation of fresh, organic food. Of course, keeping a good attitude all the while, as well.

I’m having Lentils and potatoes with Bok-Choy today. A salad to start.

Another coincidence?

Posted on July 16, 2011 by admin

Just got back from town and buying more stuff. Sports Authority, where I now own a corner. I was checking out back packs and this guy wanders over to help me. In the course of the conversation, after he tells me, what an awesome idea this is to walk the Camino and I told him why I’m going, he asks:” Do you know about the Gerson Therapy?’ I was speechless for a second. Not only that but in specific about the coffee enemas. My goodness. This is Montrose. Seems like there are a few enlightenend people here.

Bought the backpack but probably end up taking it back as it weighs twice (over 3 lbs) of what should be available, according to research. I need every ounce and every spare inch.

Train wreck

Posted on July 12, 2011 by admin

Well. I didn’t see that one coming. I am totally wiped out and could wipe the puddle on the floor, that is me.

After months, weeks and days of utter cheerfulness and Pollyanna method, the mighty self crumbled and I’m weeping over any damn little thing. Could be the pain meds. Could be that I feel that having cancer once was enough. That I paid my ‘dues’. I feel like I carried this big sack up the mountain, slid back down, picked it back up and go again.. and again. I feel overwhelmed and sad. I wish I could find a Naturopathic Doc who would lead me through this jungle of choices. Which one to do? Which one to avoid?

I don’t want to repeat, even one more time, what my test result was and how this brings the reality closer and closer. Then again, tomorrow is another day and I’ll carry on, chin up, etc.— Thanks Cameron for catching me and giving me a soft place to fall.

The Verdict: Cancer. Again.

Posted on July 11, 2011 by admin

A few days ago, Mom must have been having thoughts of mortality again, because she arranged for me to have power of attorney over some funds she has in an account in Germany “in case anything happens to me”. She also mailed me her “UBC [USB] stick”, which has her notes on her life story, illness, and, not least, recipes.

Today she Facebooked this:

Dr. just called with Pathology report. Yes. It was cancer but he’ll send it off to Mayo clinic as he disagrees with pathologist [who erred in one of his key premises, that Mom’s lung cancer was her “primary” cancer, when her primary is the one from ten years ago: ovarian]. It was “clean” without any others in there.

And she sent me a message from there too:

Just got report and it’s what I knew. Will now start the ‘Gerson method’ for sure. Need a different juicer. Mine’s crushing and not expelling the juice.– Will you start checking on flight cost? Where are we starting? French side? It’s the prettiest.

In other words, she’s as determined as ever. So here’s where things stand:

1. We expect a report on the actual kind of cancer, and type of cells, from the Mayo Clinic within several days’ time.

2. She’s throwing herself into the Gerson Method. We’re looking into juicers that actually facilitate the whole point of juicing – at costs of around $1000 on eBay, but stay tuned to see who – we humble deserving sorts or the faceless eBay masses — wins the next auction (I’ll even take bets on who wins the betting). Pricey, but we think it’s worth it. Penny-wise, pound-foolish – and Mom’s pounds, so to speak, make up some very precious cargo!

3. Mom is now clear that she wants to spend six weeks in Europe, walking as much of the Camino as she’s able, and then – and this thrilled me to hear it, Alp-lover that I am – reward herself with a few days in some Alpine spa, a la the old-fashioned “rest cures” popularized in Nobelist Thomas Mann’s The Magic Mountain.*

4. I’m researching online and asking Don Julio, our Man on the Ground, what city to fly into, where to begin, what to bring, what it should weigh (a critical consideration), and so on. As I do that, I’ll build our Resources page . . .

* Except that, if I recall correctly, Mann’s hero, Hans Castorp, a symbol of [pre-WWI Germany? European bourgeois society?] was sort of in love with being sick and dying. Though he visited the Swiss sanatorium of the title (based on the famous Waldsanatorium in Davos, Switzerland) only to see his tubercular cousin, his health got mysteriously worse and worse, so that he spent seven years there before being called up for World War I and, presumably, his end. Mom is the anti-Hans.

Mom, Irascible, Continues Recovery, Insists on Hiking

Posted on July 10, 2011 by admin

Like in the Rocky movies, right after he hits either a physical or emotional downturn in mid-movie, Mom is back in training only days after leaving the hospital. Cue the Training Montage, staple (in fact) of all fight movies, from martial arts and boxing films to wrestling, cheerleading, and dancing movies. (My favorite scenes are of Stallone and Carl Weathers sprinting, on the beach).

Mom hasn’t quite figured out how to blog here, so I’m reposting her Facebook posts (at which she has become expert).

Yesterday:

Remember the old joke that the brain was not the most important organ?? It’s been 5 days without BM and I don’t think that’s a correct statement –I KNOW SO!Stopped the drugs all together. I think, one incision opened. I feel like I’ve been ‘filet’. Little buddy came with beautiful flowers as did other friends. Those bird brains have not called about pathology. Letting me wait the whole freakin’ weekend.

One of Mom’s friends told her that if she had an open incision, she should get to the hospital!

Mom:

I’m not paying Emergency room fees on top of those inflated ICU rooms. (You’re a good nurse. You come and see. :-)– I’m going hiking tomorrow. Maybe not Black Canyon but nevertheless…

Three or four days after surgery, Mom is ready to train again. Can you believe it?

Today 6:02a.m. Mountain Time:

Hard rain most of the night. Great smells and sounds except for the huge Thunder. Came out of my bed (injury and all) like a shot and hollered ‘Holy Crap!!’ Dog ran under my bed and whined. If I could’ve, I would’ve followed. Going for a long walk at the park. Bored to tears at home.
It’s been gushing rain for days, in the form of thunderstorms. Mostly at night. Sleeping with the window open, there’s no better smell nor sound.

Post-Surgery, Mom Reports Into Facebook

Posted on July 8, 2011 by admin

Here’s what she had to say today:

I feel like I’ve been stabbed and then hit by a ‘Mac truck! (2 Days in Intensive care unit and then home. Too ornery to keep.) So. When someone says it’s ‘minimally invasive’ make sure you interpret MINIMAL correctly. Holy crap that was a surprise. Going back to bed and my hazy world of drugs. But, not to fear… I’m back. Thanks for all your good wishes and prayers.

and

Can’t sit very long and am too ‘medicated’ to think about spelling. 🙂 Just checking in to say ‘Hi’ to all of you lovely friends and wonderful family. Everyone called. Brother from Switzerland. Cousin from Germany. Friend from Las Vegas my daughter Tanya and my other daughter. :-)))))))))))) Coughing presents multi-culti curses.

Well-wishers are piling on with comments and Likes.

“It wasn’t a minimally-invasive procedure after all”

Posted on July 7, 2011 by admin

Mom called me today, having just gotten out of the hospital. My first reaction to her voice was concern: she sounded . . . sad. Or emotional. Turned out she was, in fact, in “a lot of pain.” One of the first things she said was that the procedure “wasn’t minimally invasive, I can tell you that.”

“I don’t know why I thought it was going to be a simpler procedure,” she said, in that slightly higher, sleepier tone. “But I guess I’m glad I didn’t know what it was going to be.”

“You probably would have just worried more, to no effect,” I agreed.

“I just wanted you to know I’m going to be out of commission for a while. Julie” – a close friend of Mom’s who is around my age – “is here and she’s helping me. I have to go now, though. I need to lie down and just rest. The pain is really terrible.”

“Okay,” I said. “I’ll talk to you later. I love you. And have someone read you my blog article!”

She said she would. And off she went, probably to sleep.

Musings of The Son as the Mother Lies in Hospital

Posted on July 6, 2011 by admin

An attitude of gratitude. That’s what I am trying to cultivate today. Generally speaking, I am nothing but annoyed – an attitude of ingratitude, I might point out – by nifty-sounding phrases like “attitude of gratitude”. But the rhyme clothes an important and skillful way of being, one often overlooked by people who wonder, as a result, why they’re not happy. More on that later . . . For now, I am simply cultivating these positive, grateful, appreciative thoughts that, by definition, crowd negative thoughts off the stage:

I’m grateful that Mom came out of the surgery without incident. (As I write this, I still haven’t heard from her personally, so she’s probably still woozy; I know what I know from Monica, one of the members of the Montrose Deutscher Posse).

and

She’s such an inspiration to so many people.

There’s no one with an attitude of gratitude like a cancer survivor. We ignore at our peril the elixir of life with which they emerge from their hero’s journey, telling us, in so many words: This matters. That does not.Guess what “this” and “that” are.

A Cancer Survivor (yes, first caps) is what Mom is, about ten years strong. But cancer is something that’s never entirely gone from a survivor’s life. For a decade now, she’s lived with the tests and the doubt and, more happily, the new and healthy ways of thinking and eating.

In fact, it’s ways of thinking and eating that work that are among our interests here, in this blog.

She had cancer in three places a year ago: pelvis, stomach, lung. (It is the measure of the power of a son’s denial that I cannot call up these locations with any confidence). She put herself on a gourmet cancer-killing diet (and if that sounds like an oxymoron, then my mother has a new definition of ”gourmet” for you), lost over fifty pounds, saw one cancer spot disappear, another get smaller, and the third stay the same. We cheered her success.

Over half a year later, it appeared that one of the spots might be getting bigger – it was hard to tell. Cancer tests, especially after one has had cancer and the resulting floaties – a technical term – remain in the blood, are notoriously unreliable. She was disappointed, bowed, but unbroken. And she still had no desire to put toxic chemicals in her body ever again.

So one spot was operated on today, in a pretty routine procedure. “It’s not the surgery I’m worried about,” she told me on the phone this morning, “it’s what they tell me afterward.”

Camino versus Chemo

I’m hoping they will tell her she can do the Camino. That’s the Camino de Santiago, a thousand-year-old path that stretches from western France across northern Spain, and that’s the Way she wants to travel this September, in lieu of the dread chemotherapy. The Camino, or Way, is said to lead to the bones of St. James, apostle of Jesus, who, like other friends and family of Jesus, is claimed to have left Israel and made his way into European lands more convenient to Catholic churches. In any event, the legend is a minor detail; neither of us is religious. Mom, after an upbringing that prominently featured violent Catholic nuns, hasn’t any Catholicity left in her. So it’s not a religious journey. But it is one in which people can, and do, find their own meaning, and I’ve read that it quite often becomes a spiritual journey, as anything does when we do it mindfully.

I know the last thing in the world she wants to hear is that she needs chemotherapy. I’m hearing of more and more people who have endured the horrors of chemo and who refuse ever to do it again – the horror! I hear Kurtz saying, in “Apocalypse Now,” a movie about the Vietnam war that prominently features chemicals that kill. The horror!

Over the last year, whenever Mom has tried to talk about chemotherapy, she’s begun to cry. It’s one of the freshest ten-year-old wounds you’ll ever see. “I can’t do it again,” she says. “I just can’t.” So she has turned the power of that emotion into the passion with which she exercises and disciplines herself to a super-healthy, natural diet in a world of fake food and other gustatory gimcrackery.

The Purpose of the Camino

About two months ago she got the idea of the Camino from a documentary, and that idea burgeoned into her new purpose. (Researchers into all manner of illness, and even longevity, will assure you that it’s a sense of purpose that separates the happy from the less so, and the healthy or long-lived from the sick and early-dying.)

So she bought herself some hiking shoes and began to “train” for her pilgrimage through Spain on the trails around Colorado’s Black Canyon – at nearly 7800 feet high, that’s more than enough altitude for the 5000-foot Pyrenees.

“Instead of doing chemo,” she reported thinking a few weeks ago, while she hiked near the Canyon, “I’m walking the Camino.” Now you know why this site is called what it is, or at least the limits of my imagination.

What will the doctors tell her after the biopsy on the removed mass? Will they say “Chemo”?

And if they do, will Mom respond, with a shake of her head, “Camino!”?