They should do a study of what happens when you come off a chemo drug after 2 1/2 years on. I felt really good for the first 10 days or so, and I still do. And, some odd little symptoms linger. Late morning I may feel extreme drowsy with a little blur vision and off balance. Or, I might not and feel fine until 4 or 5pm, then the drowsy thing. I swear I cannot see as well since stopping the drugs. There is an intermittent blur, one eye then next time the other. My body hair is growing back and I need a haircut much sooner than all the time on treatment. My head hair is not as coarse. None are tough symptoms, just little oddities that I won't even notice or remember in a couple weeks - the body does forget.
It has been a month long break from treatment. Now it's time to go again but on something different. I have been exploring several "first in man" trials, but I think I will wait and be "2nd in man" when those trials mature a bit. NIH is trying to get one of those and I will be a good candidate when that happens. For now, I plan to start Torisel, a weekly in the arm infusion along with the previously used Avastin to slow blood flow to tumors. For Torisel info: http://www.torisel.com/How-Torisel-Works.aspx
First of July I qualify for Medicare, so no more very high premium COBRA payment. Medicare is not free but it's expense does have a predictable cap that most likely is less than I had to pay on COBRA to have coverage. Medicare is way to complex to get started on, mostly because Congress has passed so many nit picking laws. I think many elderly get caught in the complexity and do not get the care they need or pay too much. Hopefully I have it nailed correctly from the start.
Between figuring out medicare and researching trials and knowing I need to get back on treatment, I was feeling overwhelmed and stressed. The relief of getting those things done is welcome. Thank you all for being in each other's corner.
Bill
Sunday, June 19, 2011
Father's Day
Any male can sire a child but only a Dad can be a father. My Dad was a father. He died in 1992 of anger, resentment, fear and low self esteem. It's hard to keep those feelings stuffed down and in without something exploding like a heart attack or some other bizarre symptom of stuffed emotion. He slapped me around, maybe worse so it is said, but I do not remember. He knocked my Mom around and berated all behind our closed doors. I saw him cry once, at his Mom's funeral. I heard him cry once on the phone in a drunken stupor.
And, he was my Dad. He took me to the pool hall and to work with him - I loved to follow him around, and sometimes what he won at pool is how we ate. He taught me to throw and called me "Rag Arm" as I learned to be the pitcher and play shortstop. He coached my teams from age six onward and then he coached my brother and the girls. He sometimes drove a hundred miles to see my basketball games and wrestling matches even though I lost every one.
He found my first car for $400, taught me how to change the oil, sand it for painting and install my eight track player with customized speakers. Many times at night I stole a dollar out of his pants pocket until one night I found instead a note saying, "Take two". I never did it again - not from him. I came home drunk and he was waiting. Didn't say anything except,"Son if you ever come home drunk I will take you down and sit on you while I pour a fifth of Jim Beam down your throat." He didn't say the word "again", but I never came home drunk again.
Sometimes I got straight A's in school. He was a high school drop out who could do complex math in his head. He didn't read very well and his singing in church scared the organist but no one said anything. I read alot, graduated from college and I still sing in a band in my head. He didn't say much about that stuff, rarely was I good enough, and yet I always knew he was proud of me.
He furiously compared himself to others, falling short to the day he died, and yet well over 300 people in our little home town came to his funeral. I guess we all disagreed with his estimation of himself.
Especially I think of him every Father's Day, remembering the good stuff and feeling sad about the bad. He grew up with the bad stuff, but I think he ad-libbed the good. He was my Dad and I miss him.
Bill
And, he was my Dad. He took me to the pool hall and to work with him - I loved to follow him around, and sometimes what he won at pool is how we ate. He taught me to throw and called me "Rag Arm" as I learned to be the pitcher and play shortstop. He coached my teams from age six onward and then he coached my brother and the girls. He sometimes drove a hundred miles to see my basketball games and wrestling matches even though I lost every one.
He found my first car for $400, taught me how to change the oil, sand it for painting and install my eight track player with customized speakers. Many times at night I stole a dollar out of his pants pocket until one night I found instead a note saying, "Take two". I never did it again - not from him. I came home drunk and he was waiting. Didn't say anything except,"Son if you ever come home drunk I will take you down and sit on you while I pour a fifth of Jim Beam down your throat." He didn't say the word "again", but I never came home drunk again.
Sometimes I got straight A's in school. He was a high school drop out who could do complex math in his head. He didn't read very well and his singing in church scared the organist but no one said anything. I read alot, graduated from college and I still sing in a band in my head. He didn't say much about that stuff, rarely was I good enough, and yet I always knew he was proud of me.
He furiously compared himself to others, falling short to the day he died, and yet well over 300 people in our little home town came to his funeral. I guess we all disagreed with his estimation of himself.
Especially I think of him every Father's Day, remembering the good stuff and feeling sad about the bad. He grew up with the bad stuff, but I think he ad-libbed the good. He was my Dad and I miss him.
Bill
Friday, June 3, 2011
Taking a break
I started Tarceva in April 2009 and added Avastin July of 2010 as part of the AvaTar protocol at NIH. So for 25 months I have been on Tarceva until 10 days ago when my protocol participation officially ended. The Tarceva and then the combination no longer was keeping growth slow. As of today I have relished 10 days of no treatment of any kind.
Driving yesterday at 2pm was a first since April 2009 - one side effect was my equilibrium being off just enough to prohibit driving . No 4 or 5 hours of down time mid day due to mushy brain and fatigue. I have already gained 8 pounds with my improved appetite. Too bad the weight has all gone to my belly. My skin rash has cleared enough that I no longer have "acne face". Generally my energy is up though my strength remains low due to muscle mass loss since April 2009. Maybe my tumors are growing more, but oh my gosh it is nice to have the break.
NIH diagnosis zeroed in on non-hereditary sporadic PRCC - not very responsive to another trial drug XL880 it seems. Per my NIH team suggestion, I am investigating 2 or 3 C-met Kinase inhibitor "first in man" trials, but may go on Avastin plus Torisel for awhile. My COBRA insurance will cover infusions but not pills such as Afinitor, so for a few weeks until Medicare kicks in my choices are extra limited. Insurance companies do tend to rule!
My cancer was first noticed in Dec 2008, and then identified as PRCC mets to lungs in March 2009. At that time an oncologist at Mayo inappropriately told me 18 mos to 2 years and already I know he was way off. Back then my hope was for a medical advancement within 2 years. It seems the Tarceva and Avastin drugs did at least buy me considerably more time to remain in the game. Best wishes to us all.
Bill
Driving yesterday at 2pm was a first since April 2009 - one side effect was my equilibrium being off just enough to prohibit driving . No 4 or 5 hours of down time mid day due to mushy brain and fatigue. I have already gained 8 pounds with my improved appetite. Too bad the weight has all gone to my belly. My skin rash has cleared enough that I no longer have "acne face". Generally my energy is up though my strength remains low due to muscle mass loss since April 2009. Maybe my tumors are growing more, but oh my gosh it is nice to have the break.
NIH diagnosis zeroed in on non-hereditary sporadic PRCC - not very responsive to another trial drug XL880 it seems. Per my NIH team suggestion, I am investigating 2 or 3 C-met Kinase inhibitor "first in man" trials, but may go on Avastin plus Torisel for awhile. My COBRA insurance will cover infusions but not pills such as Afinitor, so for a few weeks until Medicare kicks in my choices are extra limited. Insurance companies do tend to rule!
My cancer was first noticed in Dec 2008, and then identified as PRCC mets to lungs in March 2009. At that time an oncologist at Mayo inappropriately told me 18 mos to 2 years and already I know he was way off. Back then my hope was for a medical advancement within 2 years. It seems the Tarceva and Avastin drugs did at least buy me considerably more time to remain in the game. Best wishes to us all.
Bill
Sunday, May 22, 2011
The Long Way Out
"The Long Walk: The True Story of a Trek to Freedom", a book made into a recent movie called "The Way Back". I saw the movie and now I am reading the book. 5 men, later joined by a young woman, escape from a Russian Gulag during early WWII. They trek 4000 miles through Siberia, through the Gobi desert, and over the Himalayas to freedom in India. Along the way they nearly starve and/or die of thirst or heat exhaustion or freezing to death.
Their symptoms included extreme weight loss, dysentery, diarrhea, scurvy, edema and frost bite leading to gangrene. Several of them fell in their tracks and died in the desert - all were emaciated and ravaged by multiple nasty maladies. What a miracle that any survived. Good movie; good book. Inspiring to me.
My symptoms today fall far short of what they made it through. They felt excruciating bodily changes that remain beyond my experience. My symptoms have been rough and near debilitating but if they can do it, so can I. Screw the possible plan of stopping drug trials. Rather, continue the search and try possible bridges and secrets to the regression of my rare (?) form of cancer. Those bridges just might be around the corner of medical research and I believe I can hang on, trudge along and survive my own "Long Walk Out".
Here's the update: I am officially off the drug protocol on the past 10 months. The protocol included Avastin to reduce blood flow and Tarceva, the "Little White Pill" of poison that I started April of 2009. Those drugs slowed my cancer growth for awhile, but now the growth of nodules in my lungs and the metathesizing into my bones prove that it is time to go another direction. I have a lead to 4 other drug trials holding promise for breaking the structure of my cancer cells. I could start on of those "first in man" trials. Or I can start a combination of blood starving drug and a different poison drug, maybe Torisel. Tomorrow Jacki and I meet with my oncologist here in Scottsdale to gather info and discuss possibilities with him. I am penciled in for two infusions tomorrow, but we have decided to wait until we have done a bit more research. My body can use the rest.
The past 3 weeks since my last posting have been the greatest swing of emotions since my diagnosis in January of 2009. From despairing and despondent, hopeless and depressed, to hopeful and full of faith, all cycling within the same hours or even minutes - that has been the ride since blood in urine began in April. Turns out the blood was not from an infection. It might be a symptom of the blood supply drug, but more likely is my biggest tumor pressing on the connections between kidney and bladder. The bleeding is now sporadic and I think correlates with how much water I drink. More is better. The bleeding was traumatic and discouraging at first but now I am becoming used to it.
Meanwhile, I am feeling pretty good and today my chin is up. The short break from drugs is a welcome respite. My bicycle is calling my name - maybe just a short ride.
Bill
Their symptoms included extreme weight loss, dysentery, diarrhea, scurvy, edema and frost bite leading to gangrene. Several of them fell in their tracks and died in the desert - all were emaciated and ravaged by multiple nasty maladies. What a miracle that any survived. Good movie; good book. Inspiring to me.
My symptoms today fall far short of what they made it through. They felt excruciating bodily changes that remain beyond my experience. My symptoms have been rough and near debilitating but if they can do it, so can I. Screw the possible plan of stopping drug trials. Rather, continue the search and try possible bridges and secrets to the regression of my rare (?) form of cancer. Those bridges just might be around the corner of medical research and I believe I can hang on, trudge along and survive my own "Long Walk Out".
Here's the update: I am officially off the drug protocol on the past 10 months. The protocol included Avastin to reduce blood flow and Tarceva, the "Little White Pill" of poison that I started April of 2009. Those drugs slowed my cancer growth for awhile, but now the growth of nodules in my lungs and the metathesizing into my bones prove that it is time to go another direction. I have a lead to 4 other drug trials holding promise for breaking the structure of my cancer cells. I could start on of those "first in man" trials. Or I can start a combination of blood starving drug and a different poison drug, maybe Torisel. Tomorrow Jacki and I meet with my oncologist here in Scottsdale to gather info and discuss possibilities with him. I am penciled in for two infusions tomorrow, but we have decided to wait until we have done a bit more research. My body can use the rest.
The past 3 weeks since my last posting have been the greatest swing of emotions since my diagnosis in January of 2009. From despairing and despondent, hopeless and depressed, to hopeful and full of faith, all cycling within the same hours or even minutes - that has been the ride since blood in urine began in April. Turns out the blood was not from an infection. It might be a symptom of the blood supply drug, but more likely is my biggest tumor pressing on the connections between kidney and bladder. The bleeding is now sporadic and I think correlates with how much water I drink. More is better. The bleeding was traumatic and discouraging at first but now I am becoming used to it.
Meanwhile, I am feeling pretty good and today my chin is up. The short break from drugs is a welcome respite. My bicycle is calling my name - maybe just a short ride.
Bill
Saturday, April 30, 2011
Move quickly
Moving quickly because blood in urine began again while still on antibiotic, and because they do not know the cause, NIH now wants me in Bethesda in two days not 10 days. Did not sleep well last night but I did write a little something at 1:30am:
If I can be there at just the right moment,
hearing the squeegee slap against the shower wall.
She slides the curtain open and steps into
the towel I hold and draws it to her heart.
I cradle her face between my hands and see through
her bright eyes into her soul and know
I love her.
Gratitude.
Bill
If I can be there at just the right moment,
hearing the squeegee slap against the shower wall.
She slides the curtain open and steps into
the towel I hold and draws it to her heart.
I cradle her face between my hands and see through
her bright eyes into her soul and know
I love her.
Gratitude.
Bill
Thursday, April 28, 2011
The unknown "one more thing"
The previous "one more thing" was another Urinary tract infection. Turns out, it is not a UTI. NIH has studied the culture and it is not growing like a UTI, but they don't know what it is instead. So now I get to go back to Bethesda early for a round of CT scan, MRI and maybe PET to see what is holding up the urine show. Where's the cranberry hue coming from? I guess you could say to me . . . . . . . . ., "Urine for it now!"
Tuesday, April 26, 2011
One more thing
Have not had words come to mind for awhile about what to write. There is a certain slogging through mud feel to how it's going since going off and now back on my Avatar regimen. The Avastin infusion continues every other Thursday. The "little white pill of poison" aka Tarceva is at a lower dose now and so far the side effects are not as rough as before. I have more energy - I last a little longer in the mornings and my afternoon funk is shorter, meaning I can drive and get out and about as early as 5pm. Past 9ishpm though is still a cur off of energy. Get horizontal.
Last time in Bethesda they did a cystoscopy, looking inside my bladder up to the tubes coming from my kidneys. They used a mini video camera but we will leave out how they got the camera in place. That video showed no problem in bladder, but also did not explain my chronic microscopic blood in urine. Well, whoopty dooo, now I have blood in my urine. Can you say cranberry juice with chocolate syrup mixed in? The chief research nurse says that is a very helpful description of the blood so I thought you might appreciate the visual too.
It is called a "UTI", urinary tract infection. I never had one before, but I guess it is very familiar to most women. What a gift it is to pee red in the middle of the night. What? Did I eat too many cherries? Is it Christmas? I was so taken aback that I erased it from my willingness to tell anyone (Jacki). A few more red streamlets (streamlets? Not very manly my head says) and I did finally fess up on the way to Tucson for her sister's b-Day. Late that night I agreed to reach out to the on call doctor back east. He wanted me to go to ER now, but I knew it would be all better in the morning after a good night's sleep. 'Twas the next night, late, that I followed his instruction. That's when I got the cranberry chocolate.
So the ER doc diagnosed UTI, and I took antibiotic for a week and it went away. Not!! 10 days later, same thing again but darker. ER again, sample, antibiotic, but this time I sit here 3 days later still feeling an ache lower back - kidney area). Doc says the culture isn't growing like a UTI bacteria and maybe it is something in my kidney. And there my dear reader, is the title of today's blog, "One More Thing". I'll know more in 2 days, but in the mean time I get to view the movie in my mind in fast forward, but it wants to stick on the same few frames of disaster. My own little internal tsunami of tumor exploded and rushing around my defenseless body. Stay away - it might get messy. Why don't movies come with cartoons anymore?
Anyway, I can make light and try to entertain. Or, I can tell you that while I still do not think I fear death, I do fear excruciating pain. The cancer has begun to spread into my bones. I swear I can feel spots of it when I lay down in certain positions. If the pain get too great, then doctors and even my sponsor start talking about morphine and even methadone. I am 17 years clean from drugs and now cancer contemplates screwing with my recovery. It sure is easy to slip into projecting my minds version of the future.
So instead I can breathe and notice my breath, slowly in and easy out. Again. Notice and listen to my breath. Breathing, God's gift of a built in little meditator. Slow down Bill. Let it go and worry if or when it comes to pass. Breathe, deeply in and peacefully out. Right here is where I am. The time is right nowe. Right here and right now, I have all I need to be happy with the life I have and the experience that has led me to this moment. And be grateful for my wife and daughter, friends and family, people who populate my life and offer love and acceptance anytime I am willing/able to receive. Thank you,
Bill
Last time in Bethesda they did a cystoscopy, looking inside my bladder up to the tubes coming from my kidneys. They used a mini video camera but we will leave out how they got the camera in place. That video showed no problem in bladder, but also did not explain my chronic microscopic blood in urine. Well, whoopty dooo, now I have blood in my urine. Can you say cranberry juice with chocolate syrup mixed in? The chief research nurse says that is a very helpful description of the blood so I thought you might appreciate the visual too.
It is called a "UTI", urinary tract infection. I never had one before, but I guess it is very familiar to most women. What a gift it is to pee red in the middle of the night. What? Did I eat too many cherries? Is it Christmas? I was so taken aback that I erased it from my willingness to tell anyone (Jacki). A few more red streamlets (streamlets? Not very manly my head says) and I did finally fess up on the way to Tucson for her sister's b-Day. Late that night I agreed to reach out to the on call doctor back east. He wanted me to go to ER now, but I knew it would be all better in the morning after a good night's sleep. 'Twas the next night, late, that I followed his instruction. That's when I got the cranberry chocolate.
So the ER doc diagnosed UTI, and I took antibiotic for a week and it went away. Not!! 10 days later, same thing again but darker. ER again, sample, antibiotic, but this time I sit here 3 days later still feeling an ache lower back - kidney area). Doc says the culture isn't growing like a UTI bacteria and maybe it is something in my kidney. And there my dear reader, is the title of today's blog, "One More Thing". I'll know more in 2 days, but in the mean time I get to view the movie in my mind in fast forward, but it wants to stick on the same few frames of disaster. My own little internal tsunami of tumor exploded and rushing around my defenseless body. Stay away - it might get messy. Why don't movies come with cartoons anymore?
Anyway, I can make light and try to entertain. Or, I can tell you that while I still do not think I fear death, I do fear excruciating pain. The cancer has begun to spread into my bones. I swear I can feel spots of it when I lay down in certain positions. If the pain get too great, then doctors and even my sponsor start talking about morphine and even methadone. I am 17 years clean from drugs and now cancer contemplates screwing with my recovery. It sure is easy to slip into projecting my minds version of the future.
So instead I can breathe and notice my breath, slowly in and easy out. Again. Notice and listen to my breath. Breathing, God's gift of a built in little meditator. Slow down Bill. Let it go and worry if or when it comes to pass. Breathe, deeply in and peacefully out. Right here is where I am. The time is right nowe. Right here and right now, I have all I need to be happy with the life I have and the experience that has led me to this moment. And be grateful for my wife and daughter, friends and family, people who populate my life and offer love and acceptance anytime I am willing/able to receive. Thank you,
Bill
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