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.

 

 

 

 

 

 

 

 

 

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.

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

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.

 

 

I know I complained ‘a bit’ about the food on the camino. I want to be very fair and state that I really don’t know how the rest of the people in Spain eat. I just don’t like all that mayo on Tapas, nor some fish. I just couldn’t have so much grease and there was a LOT of it. In the end, it made me nauseous as I had hardly had any fat the last 18 mos and my system protested in more ways than one.

I must give our friends, Julio and Marianne a lot of kudos for their cooking because that was good and plentiful and Julio really took care to prepare dishes that I could eat and were close to my diet. I want to get the recipe for Marianne’s Couscous salad. I really liked that one.

Some of the soups I’ve had were very good, especially the one at the Fiesta where Julio ran down the cook and asked for a special bo wl for me. It was only on the Camino that things were uninspired. It’s O.K. to have eggs and bacon and ‘Jamon’ but there should be at least one or two choices for people who have health issues. i.e. Diabetes, cancer, ect. There’s a lot of sugar everywhere and at breakfast that’s all one gets. Danish, Croissants, other sweet pastries or just white bread. This is what makes the beginning of the walk difficult and hard. I wish they’d serve Oatmeal in those bars. Some had fruits, like banana, orange, and apple. But that was few and far between. and wouldn’t sustain energy over the amount of kilometers.

Maybe they’ve not even thought about Pilgrim’s health issues?

Some people are allergic to fish and lessens the choices  considerably.

I know I missed my veggies something fierce.