I rode my bike this morning!!! That may sound like nbd to most people, but this my first ride in over two years. It was only about 1/2 mile, and took it easy - I will probably be sore tomorrow - I hope so! It will be a joyful sore because I rode my bike to get it. I just cannot convey in words how awesome it was to ride. Wow!
Before this little malady took me by the 'cajones' and shook out my balance, stamina and strength, I was riding 3 or 5 times a week, 6 - 12 miles each ride. When I stopped smoking 5 years, 3 months, 21 days, 16 hours and 31 minutes ago (who's counting?) I started riding and going to the gym soon after that and got into the best physical shape since my 30s. And then the big C began taking it away. Balance, weight loss, muscle loss, stamina, energy. Now, a month off any chemo, it begins to return.
I went to my home group last night for the first time is a couple months - 8pm meeting lasting to around 10 with hang time after, was just too late before. Last night I felt good well after getting home. 'Twas great getting the hugs and seeing my homies. Soon I go on some other drug, but maybe it won't take so much away. Regardless, I sure do appreciate the respite. In recovery we call this a pink cloud; it will pass, so enjoy every minute!
This is the best physically I have felt in a loooooong time, but between my ears I have office workers who keep telling me how empty the cups are. The news is all bad. Politicians suck and we are forgetting the poor and unfortunate. The singers on "The Voice" all suck. Drivers on the road with me all drive maniacally or too slow. My belly is too big and I have jowls. You don't do things right and you really need to listen to me.
So what's really going on? I know the current feel goods are from going off chemo and I am already projecting, with some previously denied dread, the re-occurrence of previous symptoms. I have felt overwhelmed with searching drug trials, getting medicare set up, fretting about future medical expenses. Setting up my Medicare involves picking an insurance company that contracts with Medicare. Maybe you already know how I feel about scumbag insurance companies. (Oops, did I say that out loud?) What drug will best treat my cancer, and will my insurance cover it? Even the method of chemo delivery, injection or pill form, effects the cost and what percentage insurance will pay. Should I go on typeX chemo or typeY chemo? Gee, which will insurance approve of the most?
So, what to do about the currently pervasive half empty cup attitude between my ears? What a silly question! I already know what to do. Knowing by itself does me absolutely no good. Doesn't do anything at all other than give me one more way to evaluate myself harshly for not doing what I "should" do. Without action, knowing accomplishes nothing. So, get the prayer and meditation going. Get to another meeting. Ask for help. Tell the truth to just one more person willing to listen. Good grief, it even helps telling the truth to one more person who doesn't listen. Reach out and help just one more fellow human being. Give another hug. Trust God, clean house and do the next right thing. Just for today I will put into action what I already know to do. Maybe even get on that bike again.
Bill
Saturday, June 25, 2011
Sunday, June 19, 2011
They should do a study
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
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
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
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