Saturday, November 27, 2010

Results?

From in the air somewhere over probably Colorado. I had the Avastin infusion yesterday, and turkey dinner today at Jacki’s sponsee sister’s home.thefirst was (and remains a bear) and the 2nd was a delight. My appetite is less these days. I have lost 16 pounds sonce 4/09, mostly muscle mass. I wear suspenders now because cinching my belt was no longer enough to hold up my pants – the no-belt prison look with my back pockets at my knees.

I had plans last night to do a meeting and a recovery Thanksgiving pot-luck. After the seeming ordeal yesterday,I was way too sapped of energy to go anywhere nor do anything. Pretty much zoned mindlessly watching TV. Jacki says I am depressed for a few days after each bi-weekly infusion. For sure this time she is right. I feel so down. Part of it is worn out, part is the drug(s). I am sure in a couple days I will feel better.

Meanwhile, feeling this way is just part of the journey. Some days it just gets to me more than others. This trip is one of the now bi-monthly trips I make for restaging visits. Restagiing means tests and samples and scans, CTs, MRIs and PET. The PET is rough because I must not eat nor drink anything for 6 hours before. The Pet this time was scheduled for Tuesday so I ate naught prior to noon. And then 1pm. And then 2pm when they decided the machine was disabled until tomorrow. So on Wed I got to eat nothing again until about 4.

Now it is Saturday, 3 days after the infusion. Feel better except I have a cold. Nose running faster than I can keep up. Drip.

In my head it is busy with what ifs. The results of the scans were, "No change, no growth, no shrinkage." "However, we do see a small spot on your hip of something with activity going on around it. Probably is nothing, but it may be a good idea to start an additional medication just in case." "Probably is nothing". You can guess where my head went, and the thought of yet another medication dripped into my arm for an hour once a week - well let's just say fear, anger and resentment poured into my thinking. Let's just wait 'til the next restaging in January and see what those scans and tests say.

It is still Saturday and I am in the grip of infusion effects, fear of the spot, fatigue from the whole process - I am tired of this! And in the grip of my first cold in a couple years. This to shall pass?
Bill

Saturday, November 20, 2010

Rock and spin or roll and flow

Recently I have done a guided imagery meditation that I learned 35 yrs ago. It always led me to lying on a small sand bar between 2 boulders and more high boulders across the stream. I was sheltered, safe and lying in the sun. The stream carried me to that place, just as in the hundreds of times over the years of doing that same meditation. Using my God given built in meditation tools, breathing and imagination, I have reached that peaceful and safe place many times. Less frequently the past few years, caught up in life on life's terms. Distractions away from the gift and practice of something so good and replenishing - I had forgotten.

Recently though, almost by accident, I slipped into the little boat and rode the stream that has always taken me to the sand bar. This time, lying basking in the sun, I had the thought of getting back in the boat to see where the stream goes. Around the bend a beautiful garden-like vista of green and light and gently flowing water leading to what appears to be a small pond but impassable due to a damn of sticks and branches, logs and brush. In that moment I just plain knew that dam is my cancer. It has been a beautiful ride, but no way past this damn dam.

And then, I see this is a beaver dam with busy little beavers slapping the water with their tails and fortifying the damn. In despair a deep moaning howl escapes my throat, attracting the attention of the much larger and wiser old Mother beaver. She takes my hand and pulls me under, guiding me under water to the beavers den - a small dome-like shelter still under the dam but with space to breath and rest above the water. She showed me that I could just ride the boat to this point only to sit dammed in by my cancer. A beautiful journey ending here. I can relive the journey over and over, but still end up here. I can be grateful for the boat and the stream, the sun and the sand bar, the cavern with the floor of river rock crunching as I walk to the stream and find the boat. I can enjoy the mystery of the entrance from the back of my closet to the winding stone stairwell leading to the cavern of many colors.

Indeed I can feel gratitude for every single heartbeat of living that eventually has led me to the sandbar and now to the beaver dam. I can stop here and maybe help move some twigs and branches, even logs. Maybe the dam can be broken. But then the Mother beaver takes my hand again, pulling my from the den, under water and up to the surface where the water flows, as with all dams, over the lip of the damn dam. I can catch glimpses of what lies downstream but I cannot flow nor climb over this obstruction. The wise old Mother beaver tells me there is no way around but through. What?

This still, after several more imagery journeys, leaves me perplexed. "What the heck is she talking about." I do know the glimpses are hope and with that hope I can still find enough faith to keep paddling, swimming, hold my breath and trusting wise old beavers and doctors and above all else, trust the God of my own understanding. I have been helped along this far and I'll not be dropped now.

Jacki and I leave in the morning for Bethesda and another round of poke, prod and probe, scanning for changes in my tumors. Last time there was a tiny bit of shrinkage. Thank you for your prayers.
Bill

Thursday, November 11, 2010

Comparing a few notes

Again, writing my blog and writing to others effected by the same cancer type, seem to feel the same to me, so I put this one in the blog.

Say Hey Matt, I did not even see that I had a reply from you until just now. I had another infusion of Avastin today. I think this is the 7th. I recall the first almost giving me a lift for a couple hours after, but now it just kicks my butt for 2 - 4 days. Since the previous infusion I have been fatigued all but 5 or 6 hours each day and even then I get uncontrollably drowsy and have to, HAVE to, get horizontal for a while.

I cannot imagine what this must be like for your daughters. My 27 yr old daughter has been a trooper and very helpful and supportive, but I also think she blocks it out most of the time. That's the thing about this type of cancer, it just drags on and on. I still feel no direct effect of the cancer itself, well maybe some breathing difficulty, so I sometimes wonder, "Will my life be like this for 5 or 10 years, or will the cancer suddenly take me south in a few months?" I imagine for our daughters it must be like having to watch wheat grow on an active California fault line waiting for the earthquake.

I have been told the Avastin costs about $5000 per two week dose, and the Tarceva is about $100 a day. I cannot imagine how anyone outside some research project could be on these drugs which seem to be the only thing that works on our type of cancer. To be having to fight with insurance companies on top of cancer's emotional drain - I can only sense a dread.

So the medication adds up to about $13,000 per month. My brain comes up with things like, should we in America spend that much to prolong a life? And of course, that thought is supported by, "Am I worth it?" Thank God I do not have to answer those questions now. I am extremely grateful for me personally being blessed with my treatment, and I feel so very sorry for so many in the USA who are not allowed this or other treatments because of money. I think I will stop here before getting on my healthcare soap box.
Bill

Sunday, November 7, 2010

Not the only one

I am not the only mPRCC case. It is quite unusual, but I do communicate a little with others in the same boat. Often they seem focused on technical terms and acronyms while searching for THE answer. We all have different ways of dealing with the immediate and continuous losses as cancer steals the lives we used to have. My own narrow viewing often fails to notice the new and different life evolving around me. The possibility of dying and suffering is always over my shoulder, but this is just not all bad. The profound gratitude for my life to date balances the grief and heartache.

Within the diagnosis of PRCC are several variants. Mine is not hereditary. I get other terms for other colors of this deadly, to date incurable, PRCC. Mine I like to think of as a quirky curveball kind of PRCC. I have seen the term sporadic in a few references, but the narrow field of study is still missing exact parameters. I received a letter that asked if my type is sporadic and here is my hopefully compassionate response:

There seems to be nothing sporadic about my mPRCC, but then I really do not know what sporadic means in this context. I have chosen to focus more on relationships with wife, daughter, family and good friends. I remain amazed at the depth and quality I get to experience with those closest to me. It seems each morning I awake with a small box of energy and so I am very selective in allocating and I consciously choose giving and receiving in those relationships.

My search for treatment began with Mayo Clinic right here in my own backyard. They misdiagnosed and said I probably had 18mos - 2yrs. 2nd opinion was with a supposed expert PRCC pathologist at UofAz Med Center. I went on Tarceva April 2009 and saw what I guess is very slow (but steady) growth. The 9cm tumor on my kidney was a coin flip about cutting out. Still have it.

Soon after I began my own research to find work being done on this exact type of cell. XL880 seemed effective for hereditary but not my type and I was too late anyway. As I continued my search for expertise, all roads eventually led to NIH and here I am, 22 months since that first revealing scan. I believe that NIH has more experience on exactly mPRCC than any where else in the world. The fact that insurance companies are not manipulating treatment at NIH/NCI gives even more credibility. Consciously I decided to trust them on technical issues and focus more on my own areas of expertise - living and enjoying every little bit of life I can notice.

Maybe the hardest part of the whole experience has been watching my caregiver, my wife, go through just as much pain and loss and fear and personal horror. I have watched her age 5 or 6 years in the past two. I know she tries to protect me from how hard she is hit and I try to protect her from how hard I am hit. We always end up in each others arms getting real and crying for a few minutes and then we are good for 2 or 3 weeks.

Writing this blog has always been cathartic, and so is writing back to people in the same boat. Emailing or blogging about what this is like for me are similar efforts to me, so todays blog has some of both. It helps me and hopefully others as well. Beyond that I can send some prayers your way.
Bill

Friday, November 5, 2010

5

Measuring change, growth or shrinkage in the tumor on my kidney is very difficult - nigh on impossible. It is shaped too irregular. I said early on that it is about the size of a baseball.That is about right, except from another angle it looks more like a bean - it is an irregularly shaped mass attached to my right kidney. I once saw a picture of a papillary renal cell carcinoma (my type) and it looked a little like a geode broken open and showing ugly crystals within. I have learned that most of this mass is comprised of dead cells - I believe the term is necrotic.

So, how do the docs at NIH/NCI measure changes? They picked 5 of the largest nodules in my lungs. Remember way back in January 2009 the first radiologist reported too many nodules to count? They are smaller than the kidney tumor and easier to measure change. Those 5 nodules of metastatic kidney cancer are my baseline tumors measuring change in size. At the end of my second cycle those 5 tumors showed a 1 to 3MM shrinkage. Not very much, but the first time in 22 months I heard the word shrinkage

That was wonderful news, giving us hope and determination to withstand the side affects of my combination of very powerful drugs. I was discouraged and for the first week since diagnosis considered (privately) stopping the treatment. The word shrinkage ended any real thought of stopping.

Even better! I communicate some with a very few patients with same type of cells. She started the same protocol a month before me. Her recent measurements show some shrinkage and "disappearance" of a few of the smaller metastatic nodules. Dude!~ Now I am almost eager (one foot on ground Bill) for my next bi-monthly end of cycle scans. Thanksgiving week. Good timing, eh?
Bill