Started on the same two drugs again - the "little white pill", Tarceva, at a lower dose. The logistics of finding a way to afford the drug after that will take time, perhaps until July 1st when my Medicare starts. Until then, the Avatar protocol will hopefully hold growth and spread to a minimum. Maybe the lower dose will work better - you know, like 1 or 2 cups of coffee vs 9 cups. ;-)
Still, the news from the recent battery of scans and tests has given me (and Jacki, Kate and . . .) pause to consider and feel the current facts of my particular brand of cancer: there is no cure and the best current treatment can slow growth but not stop it. The best medical hope is that I can endure until a "cure", perhaps genetic intervention, is found. Short of that, continued growth and spread of the disease will take me out of this life. Previously I had looked only at the nodules in my lungs as very slow growing, leading to a long drawn out bout of cancer. Throw in the spread to my bones and new growth in my lungs, and the long part shortens.
Last weekend Jacki and I went to a friend's cabin in the mountains and considered the ramifications of the news from 10 days ago. I look at the previous sentence and know at a visceral level that it is a cold and shallow statement of what is really going on. The bottom line is that the road to my death is shorter and the time is sooner. Not imminent, but not long and drawn out so much as previously assumed. In the mountains we shared the intimacy of getting in touch with great sadness. We shared a gut level appreciation for where we have been and the richness of our life together today. But we also cried and talked, taking notes about end of life matters.
So now, a few days later, I have taken 5 days of the new reduced dose of little white pill poison, and I had an infusion Thursday. As before the two post infusion days are extra fuzzy and tired. So far the good hours each day seem to total about 8 instead of the old 6. I even have some hair growing on my arms. The acne-like rash on my face is still gone. I am still very tired, but the naps are shorter. I have gained 5lbs. All in all, the break from chemo was really nice, and so far the side effects are still less than before.
Some moments are bleak outlook "screw it, I'll just roll over and die!" Other moments are over the top optimistic expecting a miracle as though I know the details of God's plan. Other moments are just that: the small bits of life that are to be noticed, appreciated and shared. This moment is awesome! Oops, that moment passed, but check out this moment! And now another moment. Did we notice?
Bill
Wednesday, March 30, 2011
Friday, March 25, 2011
Avatar
The two medicines of the protocol I have been on, and now have a break from, are AVAstin and TARceva. Ava-tar. There are a small number of us on the protocol at NIH, maybe 20 patients, informally called "Avatars" One of them died this week.
As I am on break from Avatar and considering very limited other options, hearing that news magnified my already roiling waves of emotion. Turns out that my own response to the Avatar protocol is sketchy - some shrinkage and some growth and some spread. WTF do I do now?
Jacki and I were in bed a couple nights ago nearly asleep. My body started jerking as tears insisted on coming out. The jerks awoke Jacki and she asked what's wrong. "This is so hard!" was all I could say and it was enough. Now we both were crying in each others arms because this is so hard for both of us.
All but one of my current options offer slowing or maybe stopping the growth of cancer in my body. It is now in my kidney, my lungs, and growing into my bones. I went off the Avatar protocol in part because the price extracted by side effects became greater than the decreasing benefit of the medicine. Now I look at a couple other drugs that might slow or maybe even stop my tumor spread and growth. They both are extremely expensive. I go on Medicare 1st of July, so maybe then the cost could be covered. I will not break our bank.
"All but one of my options . . .". The spouse/caretaker of the woman who died called it "She became an angel last night." I am not ready to stop seeking a solution for my disease. I will keep "fighting". And, I dream at night of becoming an angel.
This is so hard!
Bill
As I am on break from Avatar and considering very limited other options, hearing that news magnified my already roiling waves of emotion. Turns out that my own response to the Avatar protocol is sketchy - some shrinkage and some growth and some spread. WTF do I do now?
Jacki and I were in bed a couple nights ago nearly asleep. My body started jerking as tears insisted on coming out. The jerks awoke Jacki and she asked what's wrong. "This is so hard!" was all I could say and it was enough. Now we both were crying in each others arms because this is so hard for both of us.
All but one of my current options offer slowing or maybe stopping the growth of cancer in my body. It is now in my kidney, my lungs, and growing into my bones. I went off the Avatar protocol in part because the price extracted by side effects became greater than the decreasing benefit of the medicine. Now I look at a couple other drugs that might slow or maybe even stop my tumor spread and growth. They both are extremely expensive. I go on Medicare 1st of July, so maybe then the cost could be covered. I will not break our bank.
"All but one of my options . . .". The spouse/caretaker of the woman who died called it "She became an angel last night." I am not ready to stop seeking a solution for my disease. I will keep "fighting". And, I dream at night of becoming an angel.
This is so hard!
Bill
Saturday, March 19, 2011
On the spot
When we go over the scan results, in the exam room are usually 5 people: the lead Doc, his intern/student, the Chief nurse on the project, my support person and me. This time it was my sister, the Lead Doc, the nurse and a doc skilled at showing the film of the scans. Right before my eyes were the before and after scans from July and from this week. I could see the shrinkage and even disappearance of some of the smaller nodules in my lungs. I could also see the before unnoticed nodule grown to 1.18 inch. And there near my tail bone was the lesion grown from scratch since July, now a hairy bright spot shaped like a curled up caterpillar.
So, after 8 months on the combination of Tarceva and Avastin, I have some shrinkage, a new and large lesion on a lung, and my cancer spread from kidney to lungs and now into my bones. The side effects boil down to debilitating fatigue most of every day. The lead doc looked me directly in the eyes and right there on the spot said, "This combination is not working." My eyes teared. Fear of letting go of the familiar and of trying something new. "What if the next combo doesn't work at all."
After such a pow wow, I have 8 or 10 people who I must tell about what happened. I am wiped out physically, mentally and emotionally by that time and thinking mostly of myself: getting to the hotel and crashing. Instead I must get my bags and catch the airport shuttle to catch my flight home to PHX. Six hours later I arrive home with Jacki and a few into-me-you-see moments with each other. Then I crash, deep sleep, awake and only then begin to inform others who need to know what happened. Several text messages await. Even more voice messages. How could I possibly forgotten to call my daughter, and my Mom. This trip my sister went with me and I left Jacki in the dark for a tortuous amount of time. Ohhhhhh, that hurts my heart.
Now it has been two days since getting home. The new information is just beginning to sink in. I have slept about 20 hours since the plane landed. I have talked to most of the 8 or ten and the words have become more succinct at summing up the new picture. Sharing the picture with anyone however, requires I dig inside to find what I really feel. If I can do that then we connect as two human beings sharing from the inside out. Often it takes several conversations. Cups of love seem to fill with tears of compassion. That is why they ask and why I want to answer. Thanks for being along for the ride.
Bill
So, after 8 months on the combination of Tarceva and Avastin, I have some shrinkage, a new and large lesion on a lung, and my cancer spread from kidney to lungs and now into my bones. The side effects boil down to debilitating fatigue most of every day. The lead doc looked me directly in the eyes and right there on the spot said, "This combination is not working." My eyes teared. Fear of letting go of the familiar and of trying something new. "What if the next combo doesn't work at all."
After such a pow wow, I have 8 or 10 people who I must tell about what happened. I am wiped out physically, mentally and emotionally by that time and thinking mostly of myself: getting to the hotel and crashing. Instead I must get my bags and catch the airport shuttle to catch my flight home to PHX. Six hours later I arrive home with Jacki and a few into-me-you-see moments with each other. Then I crash, deep sleep, awake and only then begin to inform others who need to know what happened. Several text messages await. Even more voice messages. How could I possibly forgotten to call my daughter, and my Mom. This trip my sister went with me and I left Jacki in the dark for a tortuous amount of time. Ohhhhhh, that hurts my heart.
Now it has been two days since getting home. The new information is just beginning to sink in. I have slept about 20 hours since the plane landed. I have talked to most of the 8 or ten and the words have become more succinct at summing up the new picture. Sharing the picture with anyone however, requires I dig inside to find what I really feel. If I can do that then we connect as two human beings sharing from the inside out. Often it takes several conversations. Cups of love seem to fill with tears of compassion. That is why they ask and why I want to answer. Thanks for being along for the ride.
Bill
Friday, March 18, 2011
... and fits in my life?
Metastasized Papillary Renal Cell Carcinoma. Journey through cancer and how it feels and fits in my life. Those are the words that 2 years ago I used to describe the intended scope of this blog. I guessed, I was wrong and totally off target on the last part. Cancer does not fit in my life!!! It has however, commanded, shaped and overrun my life.
Two years ago I was told I had maybe 18mos to 2 years to live. And then a carrot was raised in front of my nose: "We have some new medicine that might slow or even stop the advancement of the disease." Reaching for that carrot has ruled my life and had a huge impact on my loved ones. Now, a little cost/benefit analysis.
Cost: I have lost 30 pounds, mostly muscle mass; I am no longer strong. I am left with a few functional hours in the morning and a few in the evening; forget about most activities from noon to 6ish everyday. My thinking is sketchy and my equilibrium is off. Fatigue. Fatigue. I cannot remember the last time I did anything for over an hour without stopping to rest, usually in a horizontal position. Fatigue most of the time. A friend gave me words that fit: it feels like a hole opened in the bottom of my heel and all the sand its pouring out. Maybe the biggest cost is the emotional toll on Jacki and Kate, the rest of my family and my sponsees.
Benefits: As of this week and the scans, analysis, I have shrinkage and even disappearance of some of the multitude of lesions in my lungs. I have a couple good new friends (thanks JT). 2 or 3 of my sponsees and my sponsor have been there every step of the way. I have grown closer to family: Getting along and getting to know my sister Gina for 8 consecutive days surpassed my imagination. The 6 days in a row of just my 26 yr old daughter and me together, no one else, is a precious miracle. I know of no other father with that experience. Jacki, my wife. Indescribable! In our hurricane, flexible as a willow, rooted as an oak and giving fruit from her inner orchard. I did not know this depth of love and I aspire to be the man one day at a time deserving.
The scans this week showed shrinkage of some nodules in my lungs, but one bad boy thought dormant in my lung but next to a rib, has tripled in size to 3cm, about 1.18 inches. Several of the others that have shrunk remain an inch, give or take. But worse to me is the growing nodule near the left side of my tail bone. Overall, kidney tumor is about the same, some tumors in my lungs shrank but a new large one has popped up, and now my cancer has metathesized into my bones. The cost out weighs the benefits.
The lead doc at NIH/NCI on my study is taking me off both drugs for a couple weeks - take a break. Jacki and I will consult with him and the rest of the team about what to do next. There are a couple other combos of drugs to try. It has been near 48 hours since last dose of the daily "Little White Pill", and I feel better already.
Bill
Two years ago I was told I had maybe 18mos to 2 years to live. And then a carrot was raised in front of my nose: "We have some new medicine that might slow or even stop the advancement of the disease." Reaching for that carrot has ruled my life and had a huge impact on my loved ones. Now, a little cost/benefit analysis.
Cost: I have lost 30 pounds, mostly muscle mass; I am no longer strong. I am left with a few functional hours in the morning and a few in the evening; forget about most activities from noon to 6ish everyday. My thinking is sketchy and my equilibrium is off. Fatigue. Fatigue. I cannot remember the last time I did anything for over an hour without stopping to rest, usually in a horizontal position. Fatigue most of the time. A friend gave me words that fit: it feels like a hole opened in the bottom of my heel and all the sand its pouring out. Maybe the biggest cost is the emotional toll on Jacki and Kate, the rest of my family and my sponsees.
Benefits: As of this week and the scans, analysis, I have shrinkage and even disappearance of some of the multitude of lesions in my lungs. I have a couple good new friends (thanks JT). 2 or 3 of my sponsees and my sponsor have been there every step of the way. I have grown closer to family: Getting along and getting to know my sister Gina for 8 consecutive days surpassed my imagination. The 6 days in a row of just my 26 yr old daughter and me together, no one else, is a precious miracle. I know of no other father with that experience. Jacki, my wife. Indescribable! In our hurricane, flexible as a willow, rooted as an oak and giving fruit from her inner orchard. I did not know this depth of love and I aspire to be the man one day at a time deserving.
The scans this week showed shrinkage of some nodules in my lungs, but one bad boy thought dormant in my lung but next to a rib, has tripled in size to 3cm, about 1.18 inches. Several of the others that have shrunk remain an inch, give or take. But worse to me is the growing nodule near the left side of my tail bone. Overall, kidney tumor is about the same, some tumors in my lungs shrank but a new large one has popped up, and now my cancer has metathesized into my bones. The cost out weighs the benefits.
The lead doc at NIH/NCI on my study is taking me off both drugs for a couple weeks - take a break. Jacki and I will consult with him and the rest of the team about what to do next. There are a couple other combos of drugs to try. It has been near 48 hours since last dose of the daily "Little White Pill", and I feel better already.
Bill
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