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.

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.

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.

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.

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.

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.

Constantly Questioning What We Think We Know

Posted on March 13, 2012 by admin

Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah. However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions. In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians). So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases. I view the results of that kind of discussion more favorably. While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer?

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer. And that another doctor had deemed that nonsense, saying it had to be ovarian cancer. Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.” The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor? Ovarian?

“I have no doubt,” Dr. Denver said, emphatically. The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon. He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate. (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion. If this was a high-grade cancer, she likely would have died of it by now. In that sense she’s fortunate. But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.” (I now see ambiguity in that “it” — to see if what shrinks down? The cancer generally, or the difficult lymph node? Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?

She didn’t have the reports in front of her (note to doc: buy a tablet), she said, but said mucinous was the histology of her ovarian cancer. “These tumors aren’t known for being chemo-responsive tumors,” she said. I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous? I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?” I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific). By “everything,” did she mean everything that looked problematic? That was my understanding. I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable. This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much. It will be all scarred in, it will grow back, and any attempt to resect will be even harder.” As I did many times on the call, I restated this to her in different words to ensure I had understood it. She went on: “When you operate and disturb the natural tissue plain, you create more scarring. If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future? And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals. It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science. The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning. Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission. It can get aggressive and resistant to treatment. Almost every patient on IPT will go into remission, he said. They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said. He said it was very good that Mom felt well. If she feels well with no symptoms, he said, she’ll do better with IPT. “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”. She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies? I’d been unable to find any original studies on the web, and only scant reference to any studies. I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies. The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true. They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United). There is no money to be made in therapies that aren’t conducive to being patented. If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices. In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies. Doing studies properly costs a lot of money. IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals. And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy. Anything else is just investigational. She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said. “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed. That she hadn’t even heard of it proved that much. It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said. She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”: the systemic assault of chemotherapy was the solution to such a case.

Biopsy

What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay. There are a variety of them in use; some are good and some are not. The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said. A certain amount of tissue. And she was doubtful you could do that safely. She concluded: “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.” This is the kind of language I look for. It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us. We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.

Paging Dr. Chutzpah

Posted on March 11, 2012 by admin

I came to Colorado near the end of February because my mother’s Denver surgeon had

What I brought from Oregon

said, unequivocally, that surgery on the last of Mom’s tumors would take place “at the end of February or in early March.” Once I was already in Colorado, the doctor, whom Mom had told I would be flying in for the scheduled surgery, told us removal of the entire tumor would be risky, and was not viable.

Still, I’m glad I am here now to sort out this curious breed of people they call doctors, and to help Mom reason her way through important medical decisions. I am finding that being a patient-advocate means being a very patient advocate. Here I am, calling the proton therapy center in Loma Linda, California:

Me: What do you mean you can’t take people with Stage IV cancer? Why not?

Bureaucrat (not her actual name or title): We only do the proton therapy on Stage I and II.

Me: She’s not symptomatic. Another proton therapy center thought that made a difference. No?

Burcrat: We only do I and II.

Me: So is there some distinction, as regards proton therapy, that makes Stage I and II different from Stage IV without symptoms? Or could it be a distinction without a difference?

Burcrat: Stage IV is the stage we don’t do proton therapy on.

Me (trying another tack): Can you tell me why that is?

Burcrat: That’s our policy.

Kafka Was Lucky

The works of Kafka became famous for situations that make more sense than talking to someone who doesn’t know why her organization does what it does. If only the woman had uttered one of my favorite lines from The Trial, in which two mysterious men materialize in Joseph K.’s apartment and are unresponsive to his queries, the day would have been at least aesthetically perfect. In The Trial, Joseph K. eventually tries to leave his apartment, but the men tell him: “You can’t go out, you are arrested.”

“So it seems,” K. replies. “But for what?”

“We are not authorized to tell you that,” he is told. “Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course.” And then the hilarious line: “I am exceeding my instructions in speaking freely to you like this.”

K. tells himself this must all be a practical joke, or at least a mistake, for he lives in “a country with a legal constitution.” But no. K. is now in the surreal, irrational world that would come to be called Kafkaesque.

And I am in the world of American medicine, the bloated, inefficient thing we find ourselves stuck with in 2012. I’m an advocate for my mother in a different kind of trial. And one of the lesser trials is of our patience.

Witness our experience with the Denver-based gynecological surgeon and oncologist we met above. We’ve taken to calling her Dr. Chutzpah.

Dr. Chutzpah: Part I

Nearly two years ago, Dr. Chutzpah told my mother that she, Dr. Chutzpah, would not perform surgery on the tumor now in question unless my mother underwent chemotherapy afterward. (Yes, afterward. As if she could legally bind my mother’s post-surgery conduct). My mother told the doctor that she couldn’t go through another round of chemotherapy. The doctor said she would not operate without chemotherapy.

Last Monday, Dr. Chutzpah told us that the tumor is now too wound up with veins from the aorta to allow for a safe operation. She also said that Mom has a mucinous tumor, and that such tumors are usually not responsive to chemotherapy.

Dr. Chutzpah to a White Paging Telephone, Please

So Mom and I unpacked that as best we could.

In order to perform critical surgery, two years ago, that could have prevented the further growth of the tumor, had she required a likely waste of time, my mother’s scarce money, your taxpayer money (Medicare), and, not least, a great deal of statistically unnecessary suffering?

So what should we do now? we asked, two years later.

Dr. Chutzpah suggested that Mom should go through chemotherapy, just in case it worked.

Mom and I were perplexed. Hadn’t she just said this tumor was unlikely to respond to chemotherapy?

Dr. Chutzpah: Part II

In mid-January, Dr. Chutzpah told Mom to get another $8000 PET scan. Mom had just had a PET scan in mid-November.

Dr. Chutzpah then had Mom and her friends drive over the Continental Divide, in January, to Denver, for a pre-op procedure – and then sent her home, saying the hospital in Grand Junction had failed to send the critically necessary PET scan. Once Mom had arrived back home $400 lighter, Dr. Chutzpah’s office located the PET scan. It had been in her office all along.

But then Dr. Chutzpah said the $8000 PET scan that she had ordered, and which was necessary to the $400, two-day trip to Denver, didn’t show the right information. She called it “blurry”. Then Dr. Chutzpah did an interesting thing. She told my mother to get a CAT scan.

Now, you would think that if a PET scan had been the best choice all along, Dr. Chutzpah would have ordered another one. Or, if PET scans had a tendency to be “blurry” or to be unlikely to show the object in question, Dr. Chutzpah would have known that and ordered the CAT scan the first time around.

So far, two PET scans and a CAT scan in 60 days. Who absorbs this cost? We do.

In any event, Mom, her immune system struggling with the fearful thoughts this confusing process was causing her, immediately went to St. Mary’s Hospital in Grand Junction and underwent a $4000 CAT scan (thank you, readers!). The hospital again sent the doctor the CD. Then we heard nothing for several weeks. How to explain the time-sensitivity that says a November PET scan may not be current enough — but surgery can wait for several weeks after the third scan? Maybe there is an explanation, but if Mom was given one, she didn’t realize it.

Mom’s nerves were fraying. She wasn’t sleeping well.

Finally, Dr. Chutzpah left a message last Saturday saying she’d call Mom on Sunday. On the appointed day, Mom chained herself to her phone and did not go out all day. There was no call.

Late on Monday, Dr. Chutzpah reached Mom, said she’d called both of us earlier in the day (a curious fib in the age of missed-call lists), and said she hadn’t called on Sunday because, she said, “I thought you might be in church.”

When Mom (who does not go to church) got off the phone, she was incredulous. “Did she think I’d be in church all day?”

This, too, affected Mom’s sense of trust, and well-being.

**Dr. Chutzpah: Part III — Primum non nocere, or First, do no harm**

I watch these things with the eye of a consultant, a coach, a businessperson. (And a comic, sadly). I have been passionate about best practices and efficient systems since before I knew their names. I’ve devised the best ways of doing things, used them, recommended them, helped others build them for my entire career. And I too am incredulous — at the avoidable waste, inefficiency, and poor service I see in medicine.

Dr. Chutzpah, for example, does not have in place the fundamental operating policies a competently-run business has in place to make a real effort to respect clients’ time, money, and emotional energy (which is, or may as well be, the immune system). Leaving aside the possibly wasteful scans, here are just a few policies Dr. Chutzpah could implement as easily as creating checklists for them:

Waste no patient money, I. Establish a procedure to ensure that a patient does not even cross town, much less the state, unless the doctor possesses all the tools and information the appointment requires, including a PET scan.
Waste no patient money, II. Establish a procedure to ensure that a patient does not expend the time and money to come to an appointment unless all tools are in working order, such as clear PET scans.
Take responsibility. If doctor’s office does cause a patient to foreseeably waste time and money, the patient’s overall bill should be reduced to compensate for the increased expense caused by office’s negligence.
Pay attention to foreseeable consequences. If you know that a patient is making plans based on what you say, pay attention to what you say. For example, if you haven’t yet reviewed the CAT scan that would alone tell you if surgery was or was not possible, do not set a date for surgery that others will rely on at their expense.
Do not substitute authority for evidence. When you do recommend courses of action, explain why. Cite a scientific basis for a recommendation. For example, if chemotherapy doesn’t “usually” work for a particular situation, give the patient, at a minimum, statistics for your interpretation of “usually.” Better yet, provide the actual studies you are referring to. Otherwise we have to wonder how cutting-edge your knowledge is, how good your memory, and how well you interpret data. And because you’re a human being and I’ve read the research on medical errors when doctors don’t implement good systems, I don’t want to rely on you alone.
Have the courage to talk about ideas you disfavor. Please address those actions you do not recommend, even if you think they are absurdly alternative. Because we are going to find out about them, and we will want to know the scientific bases for your dismissal of them. We’re probably going to ask you anyway; why not be thorough and streamline things in advance? (Another doctor inspired this addition: When you are asked about alternative therapies, discuss them rationally and unemotionally, rather than with anger and contempt. The latter is about your ego. The former is about your patient).
Better yet, write it all down. It is madness to expect a terrified person to hold in her head everything you tell her, or to take flawless notes. The mind screams: What are you thinking?

Dr. Chutzpah’s Last Ride?

Because no doctor had clearly laid out the options for my mother, nor written anything down for her, we were left with a raft of questions. I called Dr. Chutzpah’s office and left a voice mail saying we had questions. I asked for her email address. I said that we would not rent, sell, or barter the email address, but if the doctor was concerned about getting inundated with emails, I could put the questions on a web page and they could view them there.

I mean, right?

Dr. Chutzpah’s nurse called, several days later, to say that I should leave the questions on their answering machine. Twice she stressed that I should not be worried about leaving “a long message”. In fact, I was quite brief. I read off these questions:

What is the primary cancer here? We have heard ovarian and lung.
How was the stage defined? What does it mean to be in Stage IV without symptoms? Is such a Stage IV not qualitatively or quantitatively different from more symptomatic Stage IVs?
Is this tumor metastatic (spreading) from the primary?
Why was chemo required 2 years ago when she’s saying now that Mom’s type of cancer typically doesn’t respond to chemo?
Why not do a chemo compatibility test?
What are your thoughts on partial removal of the tumor first?
Can a biopsy be done without surgery, or in this case is a biopsy about the same procedure as surgery? If the latter, does it not make sense to do the surgery in order to learn what kind of mass it is?

The next day, the nurse called us back.

“Dr. Chutzpah,” she said, “said that if you have so many questions you will need to make an appointment to see her.”

No, Seriously

“I’m disappointed to hear that,” I told the nurse, “because I think we shouldn’t have that many questions. Their answers should have been included in a well-thought-out presentation. And if there’s not going to be any medical exam, it doesn’t make any sense to travel all that way for a conversation that can be done by phone. Does it?”

Eliminating the only remaining reasonable objection, I added, “We’d be happy to pay her for her time on the phone, but it makes no sense to drive four or more hours to Denver when there won’t even be a physical examination.”

“I will communicate your views to Dr. Chutzpah,” the nurse said.

Eleventh hour cancellation and more questions..

Posted on March 6, 2012 by admin

Well. Knock me over with a feather! After waiting all day, Sunday for Dr.D. to call and being anxious about it, it never happened. Another beautiful day wasted and gone.

Monday morning I called Denver and left messages with Dr. D’s Onc nurse and the Co-ordinator. Another beautiful day was promised and I had enough of being cooped up. As soon as Cameron was finished with his coaching call, we got ready to drive to Ouray and have lunch. Mosey around that pretty, little town. I already had my coat on, when my cell rang. Dr. D. herself. She started out by saying why she had not called Sunday. She assumed I was in church. (Even if I would’ve been, I doubt it would be an all day service.) Anyway, I digress.

She then launched right into why surgery was not an option at this time. Seems that the lymphnode has wrapped itself in and around the vene (the aorta and therefor would be difficult and risky to remove.) I held the phone so that Cameron could hear her as well. She suggested ‘ a few chemo sessions’ first, to shrink tumor and then do surgery.

Although, this type of cancer may not respond well to chemo?? She said that it was a good thing, that the tumor showed so little growth in all this time. When I pointed out that my CA 125 numbers had gone down as well, she brushed that off as lab differentials, or something else. Funny, that! When these points had gone UP, my local doc and Ocologist, Dr. Giggles, both remarked how urgent it is that I see Dr. D. ‘You must do something soon’, they stated. But, when those same numbers go down, they’re dismissed. Of course, I never mentioned that I am taking these supplements.

I used many of those idle Sunday hours to research. What I found was this:

The Promise of Proton-Beam Therapy -Us News and World Report

I had filled out their online info sharing form and at one point they’d call me. Free consultation.

We drove to Ouray, mainly in silence. The thoughts were bumping around in my brain but didn’t find landing a spot. We parked and went up the street to find a place for lunch. The early March sun, in this high altitude was wonderfully hot. Felt great behind my cloesd eyes, to soak it in. And the fresh mountain air. Since it is still off-season, there was not much going on. A few stores trying to get rid of long kept merchandise, with offers of 20-50% 0ff. In one window, a display of rings made of semi-precious stones, caught my eye. Not too much for $75.00 but… I don’t need more stuff. There would not be much joy in wearing this bauble with tumors’ Damocles sword hanging over me.

The Vegetarian Bistro, that I’d been to before was closed. So, to Brian’s Pub we went. Semi Irish decor. The minute I went in, the cheap fry-oil smell was so strong, it made me want to get back out and breath. We ordered a Black Bean Burger with red pepper pieces and caramelized onions. I chose potato salad and Cameron had sweet potato fries. I ate half the burger (which was previously frozen and luke warm) left the bun alone. Cameron ate the burger but not the fries. By that time I was nearly nauseous from that hot-oil-grease-smell. Since I have not cooked with ‘industrial’ oils/fats, this is an assault on my taste buds and senses. (See my recipe entry about Oil Change in the Kitchen.)

We walked to the book store and I purchased two books. My sleeping pills as I read in bed, every night. Cameron expected another work call, so we decided to drive home and pick another day for going to Box Canyon Falls.

My little buddy came to have help with weekly homework. In between trying to make 10 word sentences with him and preparing dinner, the phone rang. It was the Protone Docotor.

He asked me some questions about first diagnosis and recurrence. I repeated the diffilculty of tumor place, etc. He said, oh, Inge, I can get this.’ Told me of the many success’ they’ve had with inherently worse tumors and cancers than mine. One of the worst ones he’s ever seen was a CA 125 (Ovarian cancer) with a 12,000 number! (Mine is 52). Then we got to the REAL point. Cost. One treatment would be $1200.00-1700.00 and about 8 treatments would be required. I quickly figure this to be around $10000.00 Of course , added cost the flight and stay at ? hotel? I thanked him for his time. He gave me his private phone number, encouraged me to call 24/7. No Medicare help on that one either.

Meanwhile, I had received my reply from Professor Koebe. Quick as always to reply. Never have to wait to hear from him. He’s adamant that no matter how little could be removed, to do so. Not to mess with Cyberknife and doesn’t like the idea to start out with chemo. He suggested a vene graft. I would imagine, he means to clamp off either side of the veine area, then cut it all out and graft a piece in between to make the bridge.

When Dr. D. heard that, she immediately negated that idea. ‘People can die doing this and it’s not standard practise of care. Then, post care would be near impossible.

What to do? What to do? Where to turn? Who has the best, workable treatment? Instead of final clarity, I’ve got more, hard questions. Where would I get this sum for Protone, even if I would want to try? We wasted nearly 3 months with back and forth. We wasted $16000.00 of Medicare’s money (hello, Dr. L) for 2 useless PET plus nearly $4000 more for CT. Already so much without any real help for me. (And, of course I have to pay 20% of all that.) The only one, working for free is Professor, Dr. Koebe. He gets a whole heart and ‘sack full’ of Thanks.

Prayers, Angels and Candles…

Posted on March 4, 2012 by admin

As I was waiting these many weeks for a surgery date, many people were waiting with me. In various corners of the world. There’s my family (what’s left of it) in Germany and Switzerland. With e-mails, Skyping and phone, they kept in touch. There are my FB friends who inquire daily. Everyone wishes me well, supportive with words, deeds and prayers. There’s my good friend, Ingrid in Csakany, Hungary. The rest sprinkled across the United States.

My sister and niece, drove to Heroldsbach, Germany. A place in the countryside purported to have had a sighting of St. Mary in 1949-1952 by several children. The spot, where St. Mary was said to have hovered, had supposedly brought forth a spring. She told the children that this would be sacred water. To heal. This sighting miracle was not supported by Rome. But, this did not keep people from coming to this small village, by foot, by car and later, by bus from all over Europe. I had never heard of it, until about ten or so years ago. I was in Germany when my sister asked if I wanted to come with them. I was curious and agreed.

The place is beautiful. Set on a large, sloping meadow, fenced in with a discreet, unobtrusive, wooden fence and a well trimmed hedge. There are the 14 stages of the cross with altars placed in between. There are flowers everywhere. There are also a lot of wooden crosses, in various sizes and weights, for serious pilgrims to carry, depending on what their self-imposed penance may be. In the middle is a small pavilion with several steps going down on 2 sides to the origin of the spring. You can see the small body of water underneath a polished, ornate brass grill.

I was having these undiagnosed, abdominal pains at that time and I placed my hand over this spring and said a silent, little prayer. A little further is a Glass Chapel with the statue of Mary inside. In front of her, huge profusion of flowers. Mostly roses. A large book, on a stand is right by the entrance, where people can write their concerns for prayer intervention, into the book. All that St. Mary required for her help is that everyone would then give written notice of any healing they received. There are plaques all over the place, running up to the ceiling, all 4 walls. Mostly with grateful, short sentences. Mary has helped. Or, with heartfelt gratitude for our miracle.

Since we finally had a date for the surgery, my sister had called with the promise of driving to Heroldsbach and placing my name into the big book. As well as spending 5 Euros for a candle to be lit on the day of surgery while the good nuns would pray for a successful outcome. I was touched.

Then Julio wrote a very nice e-mail, that he too, would go to the cathedral in Bilbao, Spain, on the day of surgery to light a candle on my behalf.

My friend Carla and her husband pray for me daily. The cashier at the Natural Market also offers prayers. As do many friends and acquaintances. I am sent Angels by e-mail, promising to keep watch over me. I should be well covered in Prayer Insurance.

BUT. There’s a bit more drama. Yesterday, I had just finished a nice, surprise call from Julio and Marianne with their happy news that they are booking their flight to the U.S. in mid April. First they’ll fly to New York, where they will spend a few days, then take the train to come West, ending in Grand Junction. We made great plans and I told them we would have a fiesta with friends to welcome them to Colorado.

Cameron was getting ready to go skiing in Powderhorn, which had just received about 2 feet of new snow. Sort of a last hurrah before the medical route with me.

I was scurrying around, letting my friends know that we have a pre-op date and went on last-minute errands.

When I came home, the light was blinking on the answering machine. Without much of any thought, I pressed the button. It was Dr. D. from Denver. She said that she and the Oncologist/Surgeon were looking at the latest CT scan. (She thanked me for getting it done as it gave them a different view and perspective of this lymph node that had gone beserk.) Then, continuing, she said that they had grave concerns as the tumor had intertwined with the veins in such a way that there would be great risks in removal. She would call me this morning to discuss this in person.

Needless to say I was stunned. I felt like I had been running and someone put a stick out to knock me off my balance in mid run. I just stood there and couldn’t even manage to produce a thought. The next thing, CRAP. What NOW? If there are grave concerns, should I even go ahead? Of course, I don’t know the detail of these concerns but I don’t like the sound of that AT ALL!! Next thought: Well. Maybe back to Cyberknife. Also. Write the Professor in Germany, ask him if he had received copy of CT scan and what did he think?

Then. Must do more research. Maybe alternate is my other only option? How do I get this damn blood-sucker out??? De ja vu! I was in this spot months ago when I agonized over the decision to even have surgery. It took such great, inner force to wrap my brain around being cut (“fileted”). Now, I have to again entertain different course of action? Should I have chemo first? To shrink this tumor and then surgery? Should I check into Proton Therapy? How is this different from Cyberknife? There’s one in Loma Linda, they’ve done this procedure longer than anyone else. As I understand it, the machine is 3 stories tall and cost EIGHT Million dollars. But is painfree. I filled out their online intake form. Someone will call Monday and explain it to me.

I’ve also drafted an e-mail to Cyberknife Oncologist. There are still all these alternate centers. GEEEZ! Nothing easy about me and my stuff. More prayers. More angels and more candles are needed.

Scalpel, just over the mountain

Posted on March 3, 2012 by admin

My son, Cameron arrived a few days ago in preparation to drive me to Denver and be there during surgery. We’ve had snowstorms for two days and bitter cold. We only ventured out to get groceries, in case we would be snowed in. (No really.) We took a short walk just to get aired out. The rest of the time, he was busy with work and I was busy with prepping, cooking and freezing meals ahead for our return, when I can not do these things.

My little buddy came to have help with his weekly homework. My friend came to drop her two dogs off. Pumpkin and Max. They absolutely enriched our days. Other than that, nothing exciting going on.

Friday, after noon, I’d asked Cameron to give Julianne, Denver coordinator a call to ask how we’re progressing. Then, suddenly we have a date. After all that waiting, it seemed nearly too fast. As in, ‘oh, I’m not sure if I’m ready for this!’ But, there it is. THE date. Pre-Op appointment is set for Wednesday, 11:00 o’clock in the morning. Anschutz Cancer Center in Denver. At that point I will find out everything.

This means, getting everything ready and set up for a Tuesday departure for the 5+hr trip. Hopefully, the roads and passes won’t be too stressful to get over. Luckily, we have a place to stay with a very generous lady, who offered her home to both of us.

I am ever so grateful to have my son there, to be my ears and common sense, when my brain turns to mush when I walk through those doors. To ask questions and to champion my cause. I will hang on to my daughter’s words, that I have her heart with me. I’m trying to figure out, how we can have her come, at least for Easter, so we can all be together for a little while. She’s so sad, that she can’t be here but we do understand.

Each time, that I’ve had surgery (meanwhile a few), I’ve had this fear of not waking up from anesthesia. At my surgey, ten years ago, to remove cancerous Ovaries and lymphnodes, I started to cry as I lay there IV in my arm, waiting to be rolled to surgery. My son was with me and asked why I was crying and I said “I am soo afraid of not waking up.’ I did, of course but I also remember the horrible pain.

When I was 8 and half years old, I had a tummy ache. Mom was getting ready to go to work, for a few hours and allowed me to stay in bed. (We had no babysitters those days.) I remember laying on the couch, vomiting vile and bitter stuff. Next day, I was already having delirious dreams. I do remember, vaguely, dreaming of large Gnomes. (Honest to God.)

When the doctor came, he pushed on my large, tautly swollen belly and quickly called an ambulance. I remember seeing neighbors gathered outside the apartment house, to see who was sick and I felt very important. I remember getting a thick- needled shot.

I’ve had ruptured appendicitis. Mom told me later, that it was already touch and go. Someone, meaning well in the most awful sense, had told her not to fret too much as she had three more children.

I remember waking up, in pain and after awhile, I felt overwhelming thirst. I’d asked the nurse for something to drink. I asked for peppermint tea as this was what I’d had at home. She said NO. I asked for something else but she said NO. Never explaining why not. After awhile longer, I just got up and went over to the faucet and drank …water. Lots of it. Well, the hoopla after that was bad. They rushed me somewhere but now I don’t remember what they did. (Pump stomach?) I remember, having this dream. I was walking toward a walled city. Everything was gold. Trees, houses, the river winding around, outside the walls, like a golden ribbon. Not made of Gold but like, evening summer-sun-gold. There was a bridge that I needed to cross to get inside. Suddenly, I heard my name . ‘Inge! I-N-G-E!’ I stopped walking. I woke to see my friend, Irene by the window. Since she was so young, she was not allowed to visit but I am sure that she saved my life, by calling me back.

After a few days without having a bowel movement, the nurse came with an enema bucket and hose contraption. At that time, I did not know what this was. I had also had developed an abcess. When she tried to insert the hose, the pain was so excrutiating, that I screamed bloody murder and wiggled to get away from that source. Well, this nurse came from Haides Hell. She hauled off and slapped me in the face. Hard. Then continued to ram this hose in. I sat in bed, sobbing when my mom came. She looked at the marks the 5 fingers left on my cheeks and asked how this happened. She took off. I could hear her shouting all the way. Mama-Bear. She went to the Administrator, she went to the Professor. She cleaned up!! I never saw this nurse again. (My daughter is a lot like her. The protectiveness is alive and well a generation later.)

After about a month, I was released. I needed to recouperate. So it was decided to send me to the country. Plenty of good, fresh air and wholesome meals. This was through the catholic ‘Caritas’. The small village was about 1 hr drive from Erlangen. Set in a very scenic and pretty village surrounded by forests, gentle, sloping hills. They call it the ‘Little Switzerland’. The little house was a kilometer or so, outside the village. Two nuns lived there. In their care was a small orchard with plum, apple and other fruit trees. Then, there was a small, lovely chapel. The ‘Sisters’ themselves were very firm and stern. (I suppose, never having had children, they just didn’t know how to interact.) It was not a good time.

My duty was, to ring the bell to assorted prayers. The length of the prayers, decided how long the bells wer to be rung and why. It all went well until another girl came. Then we both got into trouble because we were just not as pious as they expected of us. When we rang the morning vespers, we got to talking and rang and rang that bell. Village people thought there was a fire and ran outside.

When I was in Germany, several years ago, I asked my cousin to take me there. Pinsberg, fifty years later had not changed much. The village fountain, surrounded by geraniums and other beautiful flowers was the focal point. The houses, more modern and added on, white washed with brown balconies, with many, colorful flower boxes.

The Chapel still the same. Walking inside, the smell of centuries of francincense. A beautiful, crochet, starched, white cloth on the altar as well as flowers. Even though not used much, it was still lovingly cared for. It was emotional to see myself there, as a child. We had lunch at one of the ‘Gasthaus’ there. It was the best Trout I’ve ever had.

I can safely say, that there won’t be any slapping in Denver.

A new test, no date.

Posted on February 24, 2012 by admin

My days consist of the same, daily routine. I try to walk, depending on this fickle weather which is, at times, too cold, too windy, too muddy. Our regular winter weather. The monotony is only broken by short trips to the Organic store, Post Office and other errands. My light, happy moments come in the form of my little buddy. We do his 4th Grade homework together and then visit. (Are you smarter than a 5th Grader?) I find 4th Grade Math to be a challenge!! So different and strange from my days.) We’ve been friends for 10 years now. Practically since his birth. He says, we may not be related by blood but certainly by heart. Ahh. He does my my heart good.

I try not to be gone very long as I am waiting for the phone call from Denver. Two days ago, even after careful plotting my time, I came home just in time to hear a voice on the answering machine. Quickly I lifted the phone to my ear and it was Dr. D.’s Assistant.

But, not to give a date for surgery but to request that I call Grand Junction Pavilion, to set up an appointment for a new CT scan. As it turns out, the much lauded (and costly) PET, was an inferior view of the needed tumor position. I was to have this CT a.s.a.p and then the disc FED EX’d to the surgical team.

I immediately called and got an appointment for Thursday morning. Since I was not allowed to have any food nor drink 4 hours prior to the scan, I awoke at 3:45 A.M without an alarm clock. My brain and system at the ready for a fast breakfast as the interval would be very long until I could have sustenance. And, boy, do I need my sustenance. So. I cooked a bucket of Oatmeal and had a cup of tea and then coffee for good measure. Punctually at 4:30 I ceased shoving anything in.

Outside, the wind rattled and tore at the bare tree limbs. As soon as it was light, the clouds chased each other over the horizon. I really would’ve rather stayed home, on such a day. When I watched the news and weather, the report of strong winds and snow stressed me out.

Punctually at 7:30 A.M my friend Inge B. came to pick me up to drive to Grand Junction and be with me. As so many times before. Never complaining. Never using an excuse of not being able to do this kind deed. Monika had to work, so she had to miss out on this grand adventure.

We arrived early and were shown to the waiting area. There we settled in to wait for whatever would come next. What came next, were two women, who upon seeing me broke out in happy greeting and surprised exclamation. They were from Rangely. I had not seen them, in over 20 years. I said, I recognize you. I just can’t place you. Oh… I know. Rangely, right? You’ve friended me on Facebook, right?

Nancy has been fighting cancer for 12 years now. Has a port inserted in her chest for easier access of whatever needs to be pushed through. Her, daughter, who was in school with my son, faithfully goes with her, each time. Soon, the Radiologist came in with a huge, paper cup and gave each of us the ‘drink’. Gatorade with other tastes. Nasty stuff for so early in the morning. But, dutifully we drank large sips and both of us, making a face and shuttering.

Soon after, I was escorted to the preparation room. Needles, plastic hose for the veine insert. Then, off to the scan room. Siemens machine. Nothing but the finest. Laying down on the gourney-bed, I looked up and saw two panels with azure sky and white, puffy clouds. Nice touch. PET people don’t have that one. Radiologist comes and shoots the dye into my veine. Just one minute later, a very warm feeling goes through your entire body. This sensation makes one feel, like urinating on oneself. Always worries me, that I accidently would do so. Then, the voice command to ‘inhale’ hold your breath…………. breath. After about 15 minutes we are done. Needle is removed. (Thank God, I have good veines.)

By now it’s after 11:00 A.M and I am starving. Off we go to Apple Bee’s and celebrate with a big salad. Now, we wait, again. Meanwhile, my son is flying in on Tuesday. Everyone getting ready. I am somewhat antsy about the whole thing. Since I am feeling so well, I wonder how I’ll feel, afterwards. I manage to surpress worries and creepy fear during the day. But, the brain won’t be deprived of this ecclectic fodder. I dreamed: I was in the hospital, a day prior to surgery. A very efficient nurse came in, rolling a cart ahead of her.

On this cart was a long line of injections. Needles of various sizes. She looks at me and declares firmly, all these 20 shots need to be given within the next 20 minutes. All in preparation for the bag you need to wear after surgery. I woke, heart pounding and terrified that this could be a reality.

Nowhere that I can run. I am tethered to the hospital like with an umbilical cord.

I wonder, if my CA 125 has gone down more points, again? I wonder, if that would be enough to stall chemo.

I belong to a closed, Facebook Support group. Women with Ovarian Cancer. Some of them, like me, survivors of previous cancer. Many of them, like me also, have recurrence. They are very researched, knowledgeable about any and every form of chemo and radiation. They comment on their treatment. They comment on their hugely, elevated CA 125 (Blood test) numbers. Into the Thousands!! One lady’s numbers have gone up to 9000!!! The whole, horrible misery of this disease. Their cancer, unlike mine, goes rampant, aggressive and very fast. It’s in their liver, colon, lung, pancreas and other terminal places. They fear for their very lives and some, have lost the battle and their sons, daughters or other family member will post of their passing. The raw pain of their grief is more than I can bear.

I’ve decided, not to go to this site, for awhile. This is too scary and too close for comfort. I don’t want to have their painful echo and terror in my brain. I feel much compassion but this sucks energy and positivity from me. I fervently hope that they survive.

Meanwhile. I am continuing on my course. Healthful meals. Walks. Tumeric and Curcumin. I have added Black Raspberries and lemon loaded water (Alkalizing). Maybe just pitiful attempts to ward off the beast. But, so far, I have. I have done amazingly well and I’m holding on to that with all my might.

Cabin Fever…

Posted on February 16, 2012 by admin

The days drag on with no news of surgery date. Everyone is in limbo. Both of my computers had crashed with serious ‘Trojan’ virus and so I was without any communication for several days. When I went to pick up my little Notebook and didn’t have enough money, we agreed to barter. One Applestrudel for the remainder of the debt.

When I came home, last week from running errands, there was a crate at my door step. Filled with fresh vegetables. Carrots, Root of celery, egg plant, Mango, Apples, etc. The attached note read: Thinking of you, with Love. Your Friends. I was very touched and so grateful. These medical bill are leaving a big hole in already meager finances. It’s so heart warming that some people recognize the need without my having to spell it out. It’s a very difficult thing, to accept help. Since there is no date, I can’t even schedule cooking classes. By the time we’d get the word out and bring people together, it may have to be cancelled because of the trip to Denver. I really, really want to work.

Some friends have been with me through the last cancer journey. One, in particular. My friend Bonnie. Every time I had chemo, she was there all day, next to me, sitting on this hard chair. She had worked through her lunch hour, each day the week before chemo, so she could spend that day with me.

Yesterday, the trio went to Grand Junction. Inge B. drove and Monika texted and I sang along some German songs. We arrived ahead of the appointed time. I really am a very punctual person. That being one of my ‘virtues’.

I filled out the 3 page in-take form. (Should just have one copied and pass it out.)

Then, the nurse called my name and off we went to the exmination room. She sprayed my throat with very bitter stuff and thus I waited. Doctor came in with a smile, shook hands and chatted a bit. He then ran a thin scope with a small pin light through my nose, down the throat. It was just a bit uncomfortable but otherwise bearable. Then, the other nostril. Declared that I was doing great and that there was absolutely nothing to worry about. Not sure why the PET lit up. (Medicare does not pay for Consult. So this was on me.) But, to hear news like that, I will eat beans for the next week.

Professor wrote an e-mail and wanted to know what they decided to do with me… and why the wait? He also told me, that when he looked at the latest PET scan, he saw a slight tumor reduction. No one had told me that. I was very happy. Even ‘slight’ reduction is ever so much better than growth. It shows and is proof that what I am doing and all of this hard work is paying off. Let the doubters doubt. They cannot dissuade me.

More ‘what- for’

Posted on February 5, 2012 by admin

The next day I went about my business when the phone rang. It was my doc. He chastised me, once again and I answered the thoughts I’d had, yesterday.

Before I could launch into the financial aspects, he told me to ‘get on with it as he was in between patients’. I think, that was the last straw. I am looking for a new doc. Had enough of this verbal abuse, for which I am paying. Not much… after all it’s only Medicare but still, I am employing him.

It reminded me, when I was married, to ‘what’s his-name’. He was perfect in the art of verbal abuse. I remember one incident, now rather comical. He was reading something to me while having breakfast. So this was the sentence;’ This fakuhd had interesting structures.’

I asked, ‘fahkud?’ I don’t know what that is. ‘What!?” he yells, you don’t even know what a fahkud is? You always want to be so clever! Puzzled over this outburst, I said, no, I’m sorry, this is a word I’ve never heard, would you show it to me, please? He did and it was ‘facade’. Meaning: front. Spelled the French way with the accent under the c. “Oh’, I’d exclaimed, delighted, that indeed, I did recognize the word, ‘you mean ‘Fassade’, pronouncing it the proper way.

Before I knew what was happening, he picked up his cup and threw it against the sink. I was not allowed to be intelligent. He couldn’t handle it. He was throwing a whole, complete hissy-fit. (I’ve been divorced for many years.)

The rest of the day was spend in self created harmony. Feeding the birds and listening to their excited chatter, when saw me approaching the feeder. A walk by the river, azure sky and sun on my face.

I’d called Denver camp and they promised that Dr. D’s nurse would get back to me She did. Could not give me result of PET since Dr. D said, that she didn’t have the Radiologist there to interpret. My scan and case history would come before the board, this Thursday, to be discussed and then I would get their recommendations.

I’ve also made an appointment with ENT docs in Grand Junction. Another red flag for my doc, as he questioned why I wouldn’t go to local. I didn’t have time to explain, how that one missed the whole symptoms and only diagnosed ‘increase mucus production’, when it was the cellular changes of lung cancer. Why would I go back to him??

Fenruary 15th is my appointment. I really don’t think, it’s anything to worry about. This is ‘just in case’. A Raiologist and friend of mine, who had looked at the scan, told me he’d never seen anything, that would show cancer, ‘in that area’. This was later confirmed, by the nurse, who said, that Dr. D. noted, she had never, ever seen ovarian cancer end up in the throat. I have no symptoms of anything. (Other than some scratching-tickle, when I had a cold after getting back from New York.)

I got busy baking an apple cake and made myself a big salad. I’d called my friends, Monika and Inge B. and invited them for Coffee and cake for Saturday afternoon. Cleaned house, ironed and had a good evening.

Saturday, while setting the table with Bavarian China and bright, yellow tulips, the phone rang. Caller I.D. showed doc is calling. I didn’t pick up right away. Didn’t even want to talk with him but then, I didn’t want to have resentment brewing and be so little. I picked up and he gave me the result of our ‘disputed’, un-necessary CA 125 blood test.

SHOUTING FROM THE ROOFTOPS!! My CA 125 has lowerd 7 points. Seven, heavenly points. DOWN. Not the same, not UP but down. My Immune system is fighting like mad to get rid of mutant cell problem. I was elated. I would’ve cleaned the street to earn this money for the cost of test. The boost it gave me, the delight and joy of having my hard work confirmed, my faith substantiated is awesome. You cannot pay for this feeling.

So. What did he say?? ‘Don’t get too excited. You still need surgery.’ Gosh. I am going to find this golden nugget in the med world, who can be supportive and applaud my victories, whether they co-incide with his/her beliefs, or not.

I celebrated with a double amount of carrot/red pepper/celery juice. I had the music on and danced around my living room, singing along, loudly. More endorphins to shake up errant cells. Right now, I am a happy camper.

Thank you, GOD.

Odd message

Posted on February 3, 2012 by admin

Since I’ve not heard from anyone, nor from anywhere, I’ve had to make my own decisions.

No news from Germany, either. (?) But then, they have Sibirian weather there and perhaps the words froze mid -flight in Cyberpsace. Or, it was just too crazy trying to figure it all out.

It has been one month since my last CA 125 blood draw (cancer markers). So, I’ve decided to go to the lab and have one, should Dr. D. (Denver) need that as well. She had been unhappy that I had so few ‘recent’ tests done. After PET disc was send to her, again, it was placed on her desk, for review on Wednesday or Thursday and then, hopefully a word about decision to me, about yes, no, to do surgery.

Since my doc wasn’t there and I’d done this multiple times before, I just had the draw and left him a note for an order. I had a few more questions for him, as well.

This waiting is really getting on my nerves. Sitting home, waiting for the phone to ring. Just like in (long) days past, waiting for an elusive, unavailable boyfriend to call.

I went to lunch with a new friend. Then, came home to my (boring) vigil by the phone.

I thought to charge my cell phone, as I’d wanted to call my son about questions he had. There I noticed a message. Curious, I accessed my mail box. (Very few people call my cell.) It was my Montrose doc. He said, that I don’t need a CA 125 this time. Wouldn’t matter if it was elevated or, even if it went down as I had to have the surgery. ‘We must save Medicare money for your surgery,’ he said. And, why would I need a ENT (Ear, Nose and Throat) doctor? That Denver Dr. may not have excellent people skills but she does have excellent surgical skills and to wait.

Perhaps, they think, that since I’ve waited this long, a few weeks won’t matter now.

After I got over the sting and puzzlement, I was glad I wasn’t here to take this call. Here is my side: I’ve paid into Medicare my whole, adult life. It’s not charity. So far, I’ve not been a big burden nor expense to them. Then, if we needed to save, it would’ve been to dismiss the P.E.T scan of $8325.00 (German Professor said, I didn’t need one.)

Doc here also wouldn’t mind, that I use what little money I had and get into debt with charge cards, to go to Germany to have surgery and let them pick up the rest of the tab. Last time, with the cancer rodeo, I had NO insurance and was really crippled financially. Sold everything I had to help along and it was never enough. Cleaned houses and offices while vomiting from effects from chemo and cleaning supplies. Did baby sitting as well just so I would not end up a welfare case.

Friends were helping by leaving cash and checks around, hidden, easy to find but so I wouldn’t have to lose face. In return, I baked and cooked and baked and took these goodies all over town. Some church members, whom I didn’t know, donated $500.00. When I was feeling better, I baked 15 Apple Strudels and took them to their church, the following Sunday.

Then, I paid medical bills each month, for years. The State of Colorado stepped in and paid the rest. I felt very embarrassed.

I’d acted on my doc’s advice to have throat examined due to PET hot spot!

Had they all acted sooner on my symptoms, perhaps I wouldn’t be in this boat!

I was really upset and woke up early from stress dreams. To get rid of these negative emotions, I put Mozart’s ‘Le Nozze de Figaro’ into stereo with volume up. Baked an Apple cake.

I am ready for when he calls back today.

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.

I had a feeling….

Posted on January 18, 2012 by admin

After I had some time to rest and think, I became pro-active once more. Gloria from medical records at my local Dr’s called me, to assure me that she did, indeed, send the records. I, in turn assured her that I knew it was not her fault. Since it was a holiday, no one was at the office and I need to wait for my dr. to call. I’m still waiting. She worked on having records transferred on Tuesday as well. (I will bake her a cake.)

Meanwhile: I had send an e-mail to Professor, Dr. Koebe in Wuerzburg. I’ve described what had happend and asked for his advice, as I was really worried how I would get rid of this last cancer tumor.

With efficient speed there was a reply as I checked my e-mail, first thing, yesterday morning. My heart beat a bit faster wondering whether he would say, ‘so sorry but I can’t help you. You live too far away and it’s not my jurisdiction and I wish you well’. Something like that. But, what I saw instead was his reply to their incomptence and failure to communicate. How sorry he was that I had to drive so far for practically nothing.

He offered to look at my scans and surgical records, at the slides from lung surgery, etc. He wrote, to hold off on expensive P.E.T ($8000.00) until he could view all of my stuff. Then, he wrote, ‘Marion and I are always here for you.’ This simple, caring sentence made me cry. ( Marion is Executive Secretary and a warm, caring woman who has also written uplifting and cheering notes. I was so relieved that there was someone, looking out for me.

I also received a very nice comment/e-mail from a woman, who, as it turned out lives here, in Montrose. She has video’s of alternate treatments which she offered. She is convinced that traditional medicine helped to kill her son. After a few e-mails back and forth, I am invited to her home and we’ll look at this info together. I offered to bring Apple Strudel. Through this blog, I have met the nicest people.

Since Dr. D. (Denver University) had made the remark that ‘it may now be too late to remove tumor through surgery’, I started to research that very subject. (I can’t sit home scared and chew fingernails.) Why did she say this? Because she was cranky that I did not listen to her 20 mos ago? Really small of her. I have the right to look for the best, ost gentle treatment for my immune system. I have done very well until last October, when things started to move and I took immediate action, although it was ‘conventional’ treatment option because I was scared.

I’ve found CRYOABLATION. This treatment was first used in Bejing, China, about 9 years ago. It’s a process that uses extreme cold (cryo) to remove tissue (ablation) as salvage therapy when there is no other way to get to a tumor. It is also minimally invasive. (I’ve heard that one before). It’s injected at the tumor site then substance is released which freezes the tumor and it shrivels up and is ‘dead’. It only costs $26,000.00 plus air fare. Down went my excitement. But, further research showed that they also use this at Dana Faber, Harvard cancer center. My one shot to get into Harvard? 🙂 I will check this out. ‘Just in case’.

I’m also thinking of sending my records to #2 Dr. in Grand Junction. Dr. Giggles had told me that she was Nr. 2 and that Dr. D. was #1. But, just like Avon, maybe Nr.2 tries harder.

Meanwhile, everyone is on hold. My son, my daughter, my friends- me. Not knowing what to do, how to do it or where?

If Professor in Germany could remove it, do I go there? Would my son come with me? (note to self: ask son.) I could but have to pay myself and who knows how much that would be? Where could I go after surgery for convalescing? It would be so lovely, if I had their insurance and could go to one of those marvelous Wellness Centers. Maybe in the Black Forest? Upper Bavaria? Of course, if it works out that I can stay near home with loving support that would be most ideal.

Out from Under Myself

Posted on January 17, 2012 by admin

January 14. I write that to keep track. I’ve been sick for almost exactly two weeks, and in a sense I feel like I’ve missed 2012. I’m in the city now, that singular city, Manhattan. Standing before my MacBook Air at a tall, chairless table in Le Pain Quotidien, the kind of table meant to encourage executives to quaff their coffee and tourists to eat their croissant and then to get the hell out, I begin, suddenly, at long last, to write . . .

I was so happy to get into the city again, after over two weeks away. If I didn’t get a visual of John Travolta walking the streets to the sound of “Stayin’ Alive”, that’s about how I felt. Sometimes I can really feel the heels of my shoes hit the sidewalk, and at about 40^th Street and 7^th Avenue I was having one of those moments. When I realized my gloves were missing and turned to see my bus heading down 7^th I was just starting to listen, on my iPhone, to the guitars of Jet’s blistering “Are You Gonna Be My Girl?” What are the odds that, just when I need to sprint after a bus, on comes a soundtrack song from the Ski Dance Drive mix?

I leapt into the street, outran a taxi, and ran down the bus. Whew! That the gloves weren’t there (I’d left them on the first bus) hardly dampened my enthusiasm.

Afterward, I posted a photo on Facebook, of a different bus, which sparked general outrage that I would stop to take a picture of my prey before running it down. One person suggested the gloves must have been lined with rabbit fur, but the suggestion is patently ridiculous. They were actually lined with down harvested from a hundred virgins’ inner thighs.

As I continued my walk to the New York Public Library, I reached into my change pocket and without looking gave the contents to a sad-looking seated man who wasn’t even begging. Outside the library I would later set up a recurring donation to Somali refugees.

And I walked east on 40^th Street and soaked up the energy of the city.

Why didn’t I do this more often over the last two weeks? Was I thatsick?

Bryant Park Grill, with the New York Public Library behind it

You might wonder – well, you probably aren’t wondering, but lately I have been so self-absorbed I can readily imagine you thinking about me almost as much as I do – you might wonder, I was saying, if I, a coach, made New Year’s resolutions this year. In most prior years I’d have said no. This year, I have been putting together ideas, so I have a sort of plan, but it’s not done. It can’t be done until I figure out what the purpose of 2012 is, other than to scrawl on the wall another tally mark of years gone by.

My resolutions, that is, like me, are a work in serious progress. Whither Cameron? There are no yellow arrows here. “Snap back to reality, oh, there goes gravity,” sings Eminem as I write this. Exactly. Back from a camino, or path, with clear markings on it, I am still on this latest quest, the kind of quest outlined in the hero’s journey of myth and cinema.

When I left Bend in August, my plan, which I’d arrived at after visiting several cities last summer, was to move to the winner, San Francisco, sometime after I got back. That “sometime,” I suppose, holds the rub. In August I had no idea when my house would sell, but there I was, on an October 14 morning in Galicia, three days from the end of the Camino, executing the closing documents on my house and signing most of my considerable down payment into the recessiosphere. My wonderful Bend real estate agent, Kelly Neuman, hired movers to pack up my things and put them in storage somewhere in Bend.

At this point in telling my story, the language I overhear myself using with people is revealing:

I sold my house out from under myself.

I find it incredibly useful to watch thoughts, and to deconstruct them like a committee comprised of a literary critic, a psychoanalyst, a lawyer, and a writer (Freud was arguably all of these, the lawyer courtesy of his late 1800s Viennese Judaism). The metaphor I used – out from under myself — told me I believed, or felt as if, I had knocked the foundations of my life out from under myself, the way you might kick away a ladder you’re standing on.

When I got back to New York on October 22, I wasn’t ready to go back to Oregon on the October 25 flight I’d scheduled. I felt drained to contemplate it. Besides, what would I do there? My life, including my BMW, was in storage. The Land “World’s Most Expensive Ski Accessory” Rover I listed for sale on Craigslist. And if I would ever be ready to move to San Francisco, I knew it was not anytime soon.

After all the metaphorical running, running, of the past year-and-a-half, after the literal walk through Spain and jaunt through Portugal, I was, at last, without anything in particular to do. Oh, the coaching continued, but it was the next mission, the next purposeful and deliberate search for meaning, that was not clear. And as I tell clients, clarity is confidence, and confidence clarity. They are really two ways of describing the same phenomenon; you’ll never have one without the other.

In hindsight, it was probably unreasonable to expect that I would attain that clarity and confidence so quickly. Right. So, I’ll get back from the trip and I’ll be totally done with the past and completely clear about the future and life will just sort of proceed from there. There are measurable steps in life’s major transitions, and I was still, on all the evidence, engaged in some form of rest, recovery, recuperation, rejuvenation, perhaps even a subtle, low-grade form of mourning. Whatever it was, I was not my usually hyper-efficient, hard-charging self.

I tried not to resist this, because resisting reality always hurts. I should be different. I should be other than what I am. Even though any sentence that begins with “I” and continues with “should” is almost always untrue on arrival, I “knew” I should be writing. The following captured thought, repeated incessantly day and night, is how I knew:

I should be writing.

. . . multiplied, like horseflies and gnats and sometimes a mallet, by several thousand.

But what to write? The camino blog felt over for me. In title, intent, and practice, it had been a blog about Mom and the Camino and cancer: I hesitated to make it a blog about me. But even that was probably academic, because I didn’t know even what I might want to share with the world, or at least with the blog’s hundred-plus readers. I can see why all the gurus write their books from the perspective of having already reached their grail, after the fact, rather than showing us the dirty confusing embarrassing spectacle of themselves floundering about, flapping about like a fish on shore and in search of oxygen. Eckhart Tolle wrote his books after his enlightenment, and they’re fine, important books, but how do you relate to a Zen master?

Before the Camino, I had thought about keeping a blog on my journey of separation and divorce in real-time, to illustrate most pungently how a fairly normal person gets through, and to differentiate any related book from all those that show gurus dispensing wisdom in hindsight. It seemed to me that people don’t benefit from seeing or reading someone tell of their journey once it’s over as much as they would from witnessing the journey itself. But the Anatomy of a Divorce blog also was not to be.

I also toyed for a while with launching a blog about one of the few things I was , apparently, motivated to do while in New York, which was trying to meet women. But that idea too has languished, for reasons that need not detain us here.

Happily, for a while in May I had felt like working on “The Novel,” by which I mean the first in a trilogy I conceived of over seven years ago. I had worked on it peripatetically for about five years, but drifted away from it in 2009, as I spent my time being a senior executive in a start-up, being married, helping my wife run her business, and researching and co-writing a book for several publishers. I had a brief fling with The Novel during my two weeks in Israel, in May, felt great about it – but arrived back in Bend to reality. I also lost most of what I had written, after my new hard drive crashed. This was discouraging, but a drop in the bucket of everything else going on at the time.

And so the writing proceeds very slowly, though it is mostly about the Camino project, which I am tentatively calling Mom and Me, along with some subtitle, perhaps relating to divorce and other cancers. Could I finish it before the next camino season, say, by May, and get it in Kindle format so pilgrims could take it with them on the Camino? Could I get enough word-of-mouth and other buzz to sell more than a few copies? We shall see…

In early December, I decided to go to Bend to tie up many of the loose ends that had been grating on me. But that trip would turn out to be completely different from what I imagined.

Friday the 13th

Posted on January 13, 2012 by admin

Laurel, Carrie and I, left January 10th a little late but still in good time to get to Denver. Only had one pit stop in Silverthorn but boy was it frigid! Icy wind blowing and I was worried about the rest of the way, over snow packed passes, icy patches and ever more urgent warning for Trucks to stop and chain up.

Finally made it and stopped at the Marriott right across the Children’s Hospital and next, University of Denver Hospital. Huge buildings and a whole campus with medical facility for each body part.

We checked in and the room was at a ‘patient discount’. Offered Hot Tub, pool weight room and breakfast. The girls took off to check it all out but I had stayed behind, just to rest and get my thoughts in order. Later, we asked at the front desk, where they would recommend that we go for dinner. She mentioned a name, that I already forgot and the shuttle took us over there. At first, I thought it was a double wide with christmas lights still strung up, by the door.

It was an older, ‘established’ Western theme place. I noticed a large, gilded framed painting on the wall as we waited to be seated. It depicted a white cow, sitting up, short horns with a bibb around its neck and long, pink tongue lolling in anticipation of having a ‘good steak’??

I said to the girls, ‘I have this suspicion that they do not serve anything Vegan nor Vegetarian, here.’ They laughed and agreed. We observed the waitress as she went to another table and pronounced that this was a ‘verbal menu’. Rattled off the choices but not the prices. Well, with our turn, I did order Prime rib, baked potato, salad. Recklessly, I even ordered a Margarita but after 2 sips had enough guilt feelings to pass it to Laurel. Carrie and I shared one order of Prime Rib and she opted for her favorite Spaghetti (they serve it with Prime rib?)

Same waitress came to the table with this huge 3 foot peppermill to sprinkle on the salad but in retrospect, this cutesy idea did nothing to excuse the tough meat (and the mediocre spaghetti.)

My one fling before the long ordeal next day and that’s what I got. As we waited for the shuttle, people came to the foyer and looked at the pictures of past rodeo Queens and prize bulls. A whole row of this one, big black bull. Some guy remarked how the owners got quite a long run with this bull. I said, I think, we had him tonight’. The girls just doubled over with laughter, especially after some other patrons asked if our meat was tough?

I said, we should’ve called Gail and ask her where to go. Beds were great and so I had a good night. Woke up at my usual, early time and tried to be very quiet. Fumbled with the coffee maker, in the dark and then re-searched Dr. D. online. It stated that she has 27 years experience, Board certified and has, a generous 5 star rating.

Visiting the Surgeon and Oncologist

I was getting antsy and got ready to go down for breakfast. The girls just opened their eyes at that point. I went down and had some of the Institution scrambled eggs, a gray sausage patty but then felt really guilty and exchanged it for oatmeal. Promptly at 8:00 A.M. the shuttle took us over to the Cancer building. Huge. First appointment wit Dr. Lisa C. Intergrative Medicine. Her nurse came to take Vitals and remarked at my high blood pressure (168/95) I assured her, that this was only due to the surroundings and that I had very nice, normal numbers. Then, Doctor came and we went to Consultation room. (Girls came with me.) I thought, that this was akin to Alternate but no, that’s not so. Very nice doctor though. She recommended a ND. (Naturopathic Doctor)- Oncologist, in Denver for me to see but the subsequent events made this not possible. She was thrilled that I was already a a good diet, had all my thought process in order, seemed cheerful (not depressed) definitely not a couch potatoe and upon hearing of our camino adventure, exclaimed what an awesome thing to do. She kept saying, that this ND would absolutely ‘love me’ and what an inspiration I was. My blood pressure went down 30 points. She listened to my medical history and then gave me lots helpful material. i.e. Dieticians, Pharmacy, Supplemental advice and assured me, that all of this was free. Part of their program. She’s also a great advocat for Acupuncture.

Then, it was time to see Dr. D. We all went there and, after seeing this big CANCER CENTER sign, I could feel my blood pressure again. Luckily, not quite as high. All that talking helped. More vitals, weight, height. More forms to fill out. Back to Waiting area. I could see Carrie getting pale. Even a little green around the gills. I told her, she would not have to stay. This was not a nice place to spend some hours. But, she insisted on staying and even going into the room, once more, to listen to all this history, again.

They went out as I was getting ready for exam. There I sat, in the gown, in this bare room, dangling my feet and wishing I was miles away. Then, Dr. D. came in and greeted me formally and briskly. After examination, she asked her resident for P.E.T scan disc and OP slides from lung surgery. She responded in the negative, as it was not send from Montrose.

She shook her head and was upset and muttered, that ‘heads would roll’. But, she also told me, that now she had doubts, whether this tumor could be removed surgically. WHAT??

Well, it may be too big, she said and since she could not look at it, she had no idea how to proceed. They (Montrose) would need to get her this information, we also need another P.E.T scan, as the one I’ve had in October was too long ago. She said, it was really a shame that I did not have better info. Denver would now set up a P.E.T appointment, for middle of the week so I would have time and would have to do all these other tests and maybe, pre-operative, if possible. Coming on a Thursday was not a good idea.

My head spun as I tried to take all of that in. I also felt extremely guilty, stupid and ‘wrong’ to have wanted to try to help myself, in a different manner. Like, this is what you get when you go against medical advice. Good one, Dr. D. More to deal with on my full plate.

I was really shaken at that point. I felt the tumor like a monkey on my back, or more so, in my back. This was fast becoming a nightmare. I had psyched myself up, finally, to have surgery and chemo and now, we don’t even know what to do????

Now, I have to wait, again until all these appointments are in place and i’s are dotted and t’s are crossed. I think, I need something to keep me calm. I need to call some of the people, who offered their guest room, in Denver, so I can stay and get those things done. I may need someone here, to help me do all this. I think, this may be more important than having someone here at chemo. Heck, I don’t even know what’s up.

I felt very much alone, coming home this early morning. Some animal, probably a Racoon? came dashing across the road and I could’ve clipped it. Not sure. At least there was no thump, or, worse, thump-thump. But it was enought to start me crying all the way home. The dim headlights being swallowed up by the dark road and dark sky. Right now. I am out of ideas, cheery, little remarks, etc.

I am just scared.

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.

Musings

Posted on December 16, 2011 by admin

As I am waiting on word and schedules from Denver coordinator, I am in a fog-like state of limbo. I am still researching and still holding out some hope.

Cameron came, the other day, driving his big, red scout across the many miles from Bend, OR., to Montrose. He had brought odds and ends from his former life including his big, brown leather chair/office. It now squats in the living room as a silent reminder of his future presence and changes of things to come. His willingness, kindness to put his future and plans on hold is an amazing gift. Also not lost on all friends who will be involved with support and with chemo care. (At the same time, I am researching different chemo availability.) Now, he is en route to New York as we will spend Christmas together with my daughter and grand children, all put in place before these changes. I am very much looking forward to a ‘last fling’ before surgery/chemo.

We definitely need someone to help cook.

As I reflect on some of the parallels of last cancer journey to this one, I see many changes in myself. Last time I didn’t know diddly. Although being informed is not a doctor’s dream of a compliant patient. Now we can challenge and argue and ask and suggest, (for all the good it does.)

I’ve been corresponding with a friend from my courthouse days. (Bailiff that I was and loved it immensely). She’s going through cancer as I write. After my dis-enchantment with this oncologist, who in the last 20 min of our meeting talked solely to my friend, Monika and ignored me completely, an attempt of reversed psychology? Once home again and when the smell of the place had dissipated, the more I thought about his manner and behavior toward me, the less I cared for him. This is where my friend comes in as her experience was very similar to mine with same doc.

She is very happy and well cared for by Oncologist in Grand Junction. I shall call and ask to be accepted there as well. Tired, disppointed of these two, here.

One of the things I’d suggested to my friend was to have a visible goal to concentrate on and to look forward. This helps immensely on stronger brain activity, over powering negativity.

When I had cancer 10 yrs ago, I had taped a fold out from a magazine, showing gorgeous pictures of Tuscany, to my entertainment center. When the time was rough from chemo, in between vomiting and general misery, I would look at the pictures and mentally climb the stairs to the tower. There were 52 of them. I would imagine, walking through the colorful market and hear the cries of the vendors, offering their wares.

Three years later, I had the good fortune to go to Germany with my BFF Irene and my son. My cousin, generously loaned us her Lincoln Town car to use. We drove to Switzerland to visit my brother and sister-in-law. He was still Chef owner of this his little Chalet Hotel, Rubschen. We had 3 mavelous days there with the best food. He’s such a gourmet genius.

On we went through Italy. Staying at wondrous places, seeing beautiful, old towns, villages and country side. We came to Lucca (birthplace of Giuseppe Verdi.) The big car could not be driven through the small streets and we parked it outside the city walls. On we walked on cobble stone, narrow roads to the town square. And, there it was… the tower I had seen so many times in a much smaller version. I nearly fell to my knees with the joy of actually being there. Of being alive to see it. The gratefulness I felt was overwhelming. I ran over to see the steps and yes, there were 52 of them. Florence was anticlimactic to Lucca, for me.

Now, once again, I am searching and selecting a goal of a place to tape up, to strive toward.

A few years ago, I was in las Vegas visiting my BFF and we went out on the town. One place had a small, colorful tent with a ‘gypsy’ woman offering to read our future. Full of vim and vinegar the both of us laughed and said ‘oh, why not?’ I take these predictions with a grain of salt. But, a few came true. One thing she said, was that I would live to be 93, after a health challenge. I remembered that, the other day and so I wrote it on a large piece of paper and taped it to my kitchen wall. A visual reminder of what could be possible. In case you shake your head, I will hasten to tell you that I choose to believe this prediction in place of a more dire one a doctor told me, ten years ago. He’d said, that I would only have a 60+ percent chance of survival. Even though, for most cancers, this is a good number, I, who didn’t know diddly at the time, said to him, you don’t even know me. If I turn this number around, it becomes 90+ percent.

Just a matter of engaging different thoughts to take an entirely different course. It’s a choice. YOU can tink yourself better or you can think yorself into a dark place. I want a sunny spot for my future and, have some more moments of joyful recognition when I come upon a chosen place.

‘Gotcha’.

Posted on December 8, 2011 by admin

Looking at the title of the blog is almost mockery. My lofty illusions. My brave attempt to keep my body safe from harm. Yesterday, I folded. I aquisced. I capitulated. I gave up.

After more research for more natural treatments and found only slammed doors bolted with large money locks, I agreed to see local cancer center oncologist. Came highly recommended by my Dr.

A little before the appointed time, I arrived and my friend Monika, met me there (for support.) When they built this new Cancer Center, I used to drive by on my way to visit a friend. They had a huge thermometer looking board where they tracked money collected to finish this project. I remember thinking, I will NEVER go in there. Funny, isn’t it?

The appointment was for 11:30 A.M. I had to wait one hour. I found that to be rude and of course by that time, the place and its meaning had done their toll on my blood pressure. The nurse took my bloodpressure and fever indicator and pulse. Climbing up like my cancer marker. I wasn’t sure why I needed all that just to get information. But, … rules, you know.

Finally Dr.K. came in with a young lady (I imagine to observe how to handle a stubborn patient who clings to alternate medicine.

He took apart the treatmend possibility of Cyberknife. Too risky and not thorough enough to remove the ‘Squatter’ lymphnode, now a large blob. Only surgery will do this and also look into surrounding area for possible, espcaped smaller, cancerous culprits.

He took away Metronomic chemo, saying this is only for colon cancer. He took away holistic clincis as quackery. He said they used to try the hyperthermo treatment, where they removed the blood ‘to boil out’ the cancer but more died. So, they gave it up. ( My doc had informed him very well of what my ideas had been.)

He was, One of Those.

He alluded, since I’ve waited so long, maybe even Dr. D. (whom I ran away from 19 mos ago) couldn’t remove the tumor by means of serious surgery. That, perhaps radiation was the only way left. This intricate surgery can not be done even in Grand Junction. I must go to Denver and Dr. D. is the best. He said, I needed the BEST.

I’d told him, in the beginning of our talk, about the lifestyle change and its first, promising success. He said that, You don’t do away with cancer just by a diet!’ giving a dismissive wave with his hand. I replied, with all due respect, that indeed I had removed one tumor and even the ‘bad’ one had retreated a bit and no one was going to take that away. His expression was mildly condescending and I could see the words “Gotcha’ imprinted on his forehead.

I swallowed the bile that threatened to rise and I added, that even by waiting this long, it was perhaps to get ready for this fight as I am in the best shape I’d been in a long time. I imagined myself standing up and motion to pick up a mantle and say “I am the Warrior Queen, You may get me now but I will determine the rest.

They will send my medical records to Denver and in a few days I will know the date of my consultation with Dr. D. I wonder, if she’ll say, what took you so long? Or, I knew you’d be back. (Tail between my legs.) Right now, I’m just concentrating on breathing, in-out. So as not allow fear to rule. I don’t want to ponder the particulars of this ‘intricate’ surgery and all the things that ‘could’ go wrong. The ‘could’ word, with which they scared me into submission.

What did I do after this meeting? I went to the Organic food store and bought some more ‘Dessicated raw liver’. Then, I went shopping to buy a few things, luckily on Sale, for my trip to New York. I will do what I see fit as far as my food-lifestyle and supplements are comcerned. Maybe, after chemo, even go to a nice Wellness place, to remove the toxins and poision out of my body. I am going to have a Wellness Sale. (Anyone want a diamond wedding set? A men’s Turquoise silver bracelett? An antique painting with a scene from Russia, in Winter, with a Daka lighted windows?

Friends are gathering, once again, to help with loving support. To stand watch outside OP to pull me through with their Love. My daughter, sending up her own wishes in prayer and support. My son, prepared to come at a moments notice, to mop up vomit.

I will not dismiss God’s Grace in all of this. That, even though He did not accept my offer at the cross, that He’s given me all these months, to experience, to enjoy these marvelous gifts of travel and The Camino. That I am in the best physical health, otherwise. That was his generous gift to me. I just didn’t see it right away because I was so focused on the THINGY being gone.

I have my moments. Stark fear and shaking terror. I remember. I remember. I think, even Mother Teresa had her moments. Can’t be Pollyana 24/7. Must be allowed to deal with disappointment and change of venue.

Fifty reasons..

Posted on December 6, 2011 by admin

Sunday started out rather nice. I had found a German channel on T.V. that played snappy music. I cleaned house to that and gleefully did the polka and waltz while dusting and waxing. When I was done I watched a beautifully done fairytale.

A friend came by and we had coffee and just baked Gingerbread Muffins, which were divine. After she left, the phone rang and it was my Doc. After not hearing for nearly 2 weeks it startled me. So. He expressed his great concern and launched into a thorough explanation of what I should do and why. (I think I covered that in a recent post). The risks were covered as well. Surgery would not be an easy one and as previously stated, the lower bowls are in the way! Once the cancerous lymphnode was removed, clips would be used to mark the spot for later radiation. And then, for good measure the dreaded, long avoided, running away to do the camino, CHEMO! There it is. I can hardly stand to look at the word.

Then I fell apart. Just howled with the memory of pain and crap and that I would have to do it again. I could barely get my breath. If they slipped, horrible things could happen. That was a bad night and a very long one. Friends would say, why didn’t you call me? I’m open 24/7. I said, well I could not have talked. Dawn took a long time coming. This long time… the blue hours. I have to catch my emotional equilibrium again. Spirit, don’t leave me now. Strength and faith— where are you??? Someone else said I can imagine how you feel. NO. You. Don’t. I was just a quivering mass inside, scared out of my wits. I was caught. Just like an animal in a net.

I feel my control is slipping away. I have to bow to their treatment as the others are now too ureachable. Moonwater. I said to him, wow, now I have to go to Dr. D. with my tail between my legs to do surgery. (She was the Specialist from Denver University, whom I saw 19 mos ago.) The one that lit my fire to run away. And look, what all I have done in that time. So, no. I’m not sorry nor filled with regret. I am soo proud of what I’ve done and so very pleased all the places I went to think it over. But now, I am at the end of my tether. The things I ground up, swallowed, mixed, pureed, cooked and ate raw. The vitamins and irons I faithfully swallowed. The good thoughts I thought. The optimism I stroked so tenderly. I have to work hard to recapture this again.

As I commented the other day, they can kill me but they can’t eat me. I will be up once more and I will put my warrior coat on and I will fight for the best life I can have. To even get another chance is a blessed gift from God. That the cancer has not spread throughout is remarkable. To have removed the largest one JUST with lifestyle changes, was enormous. I am in the best shape, physically, that I’ve been in, in a long time. I am not defeated.

So. I start marching.

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.

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?

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?