Medical News….Updates on my condition…..
I had a routine doctors visit on today nothing major came of it and I only got stuck with the needle once today so that was good. There is some concern over some of my lab results so some medications will be adjusted and more test run in the coming weeks to see what is causing the lab results to vary. I have a CT scan scheduled for next month, eyerthing else is pretty much the same. I leave my apartment everyday with a bag packed waiting for the call (I have never been in the military so I can’t make a statement about being the first to go and last to know but, I am a father so I can make the connection here to always having to have the maternity bag packed and ready minus the good snacks that were hidden from the wife the guys know what I mean).
Random thoughts and Jerroldisms
Longest living heart and double lung transplant patient
http://www.sunherald.com/mld/sunherald/news/nation/15806296.htm
United Network for Organ Sharing
http://www.unos.org/
Article about CT scans and Lung Cancer
http://www.cancerpage.com/news/article.asp?id=10214
I make a lot of references to sports because to me sports in many ways parallels life. Some use blogs as a gripe session to say things they would otherwise be to afraid to say in person. If you know me, you know I am not afraid to say much of anything, I still rarely hold my tongue I am now just mature about some of the content and responses that fly out of my mouth.
I with so much down time in the evenings I have too much free time to think and too much time to spend reading books of all kinds. I have even begun to form Jerroldisms and the meaning of life according to Jerrold ….
I think in life we have to great vices fear and failure. There are many different vehicles we can use to mask those root vices but in the end all roads lead back to fear and failure. These two root vices are not something we are however born with they are more or less learned responses. For example take a young child learning to walk they don’t learn fear or failure until they get a reaction from their parents. I feel that I have over the last several months conquered my fear (of death) as everyone must go sometime no one lives forever. It is in knowing that I will one day die (as an old man) that I am able to live without fear and try to take advantage of every moment I have. Failure is not in my vocabulary athletes don’t fail we might not have as many points as the other guy at the end of the game but we don’t fail.
Life is like baseball and this temporary illness is no exception, it is temporary. Cancer to me is a curve ball the pitcher has served up but, little does he know that I could always hit the curve.
I think I am going to stay the course in dealing with this cancer, I am stubborn so all I know is to fight.
Two books that are good reads if you get a chance to read them are
Coach
by Michael Lewis
Shackelton’s Way Leadership Lessons from the Great Antartic Explorer
By Margot Morrell and Stephanie Capparell
Friday, October 27, 2006
Monday, October 23, 2006
What's Going on with me Now Oct. 24, 2006
Howdy it has been a while since I have blogged and for that I am sorry. There really hasn’t been a lot to write about on my end. I am in a holding pattern for the lungs as things are kind of slow on the transplant front here right now. I am as a computer scientist would say in a Queue (a data structures problem so to speak) it is not a FIFO (first in first off) or a push or pop queue. All transplant patients are grouped differently as the selection criteria for the patient to receive the harvested lungs is different for our type of transplant (grouped by body ie. lung size, blood type, antigens and then need is factored in) this equation is a lot easier to figure out than the BCS (bowl championship series) equation is.
My health has been up and down the last 2 plus weeks as I had to battle a viral infection (it is pretty much cleared up now IMMO in my medical opinion). I am still hitting the gym and running out of weights to lift I think I totaled just under 35,000 lbs. lifted on the 11 station fitlinxx workout we do at the YMCA. My neuropathy seems to be getting a little better as I am noticing more phantom pains/itches in my toes (so I can almost feel my feet). The increased dosage that I am on now with my oral chemo is really doing a number on my appearance (I look like an Ugmo with breakouts and nutty buddies all over).
That just about brings you up to speed with my current situation work, school, and the gym really keep me busy. I will try to get down to the city SF more since I am feeling much better to take pictures at some of the art galleries and also take some artsy type shots of Half Moon Bay.
Oh yea I was going to blog on how tired I am of needles and techs/phlebotomist digging in my arms over and over searching for collapsed veins (thanks chemo) but I think I may have found an angle amongst the butchers. I am not a wimpy guy but after some of these needle sticks and watching the butchers dig in my arms and hand, wrist, chest, neck... I think I have felt a tear or two b/c IT HURTS especially when they encounter scar tissue. Sorry for the soapbox back to the angel I have found her and although they rotate there staff all over the hospital I got her name and told her I would find her the next time I have to get blood work done. Oh yea after first we did not hit it off so well (the angel and I) that is until I showed her all my track marks and detailed how many times I had been stuck and had needles dug into me at each lab visit (8 times on average). I also told the angel that she gets three sticks to get what she needs and if she can't get what she needs in three we are going to have problems b/c they aren't sticking me anymore, fortunately she only needed to sticks one in my chest (chemo port) and one in my hand. She latter jokingly told me I made her nervous and intimidated her, I didn't want to do either but looking back I could see where I might have made her a little nervous.
Lastly I should be making my last move to the pre/post transplant apartment pretty soon. This move will be good as I will have one less set of logistics issues to worry about after the transplant and I can really concentrate on getting things ready for my wife and daughters to come out for Thanksgiving. I plan to do all or most of the cooking (no fried Turkey this year maybe next) they will have to work on retraining me. I have unfortunately reverted back to my bachelor days of work, working out, and school minus the parties, I was everything in one or two/three loads I never knew I had a tie-dye dress shirt before. I am wearing holey socks, scratching, and belching out loud my ladies really have there work cut out for them.
I have adapted and overcome a hurdled that was thrown in my path out here; it seems that although I am bringing treated for cancer and ultimately the research vulchers want my old lungs to cut-up in their labs, I can't use the Stanford basketball court to walk laps before and after transplant (it is getting cold out here). No fear when one door closes another opens so I found a treadmill for free on my new Ebay which is www.craigslist.org and will put it in my new apartment so I can stay in shape pre/post transplant (the treadmill is most post transplant as I will be wearing a large mask to keep out germs for at least 3/4 months).
Well that is all for now, I know I promised a blog on my initial reaction upon being diagnosed and it will one day be posted but something’s (memories) I don't want to think about right now.
Have a great day
My health has been up and down the last 2 plus weeks as I had to battle a viral infection (it is pretty much cleared up now IMMO in my medical opinion). I am still hitting the gym and running out of weights to lift I think I totaled just under 35,000 lbs. lifted on the 11 station fitlinxx workout we do at the YMCA. My neuropathy seems to be getting a little better as I am noticing more phantom pains/itches in my toes (so I can almost feel my feet). The increased dosage that I am on now with my oral chemo is really doing a number on my appearance (I look like an Ugmo with breakouts and nutty buddies all over).
That just about brings you up to speed with my current situation work, school, and the gym really keep me busy. I will try to get down to the city SF more since I am feeling much better to take pictures at some of the art galleries and also take some artsy type shots of Half Moon Bay.
Oh yea I was going to blog on how tired I am of needles and techs/phlebotomist digging in my arms over and over searching for collapsed veins (thanks chemo) but I think I may have found an angle amongst the butchers. I am not a wimpy guy but after some of these needle sticks and watching the butchers dig in my arms and hand, wrist, chest, neck... I think I have felt a tear or two b/c IT HURTS especially when they encounter scar tissue. Sorry for the soapbox back to the angel I have found her and although they rotate there staff all over the hospital I got her name and told her I would find her the next time I have to get blood work done. Oh yea after first we did not hit it off so well (the angel and I) that is until I showed her all my track marks and detailed how many times I had been stuck and had needles dug into me at each lab visit (8 times on average). I also told the angel that she gets three sticks to get what she needs and if she can't get what she needs in three we are going to have problems b/c they aren't sticking me anymore, fortunately she only needed to sticks one in my chest (chemo port) and one in my hand. She latter jokingly told me I made her nervous and intimidated her, I didn't want to do either but looking back I could see where I might have made her a little nervous.
Lastly I should be making my last move to the pre/post transplant apartment pretty soon. This move will be good as I will have one less set of logistics issues to worry about after the transplant and I can really concentrate on getting things ready for my wife and daughters to come out for Thanksgiving. I plan to do all or most of the cooking (no fried Turkey this year maybe next) they will have to work on retraining me. I have unfortunately reverted back to my bachelor days of work, working out, and school minus the parties, I was everything in one or two/three loads I never knew I had a tie-dye dress shirt before. I am wearing holey socks, scratching, and belching out loud my ladies really have there work cut out for them.
I have adapted and overcome a hurdled that was thrown in my path out here; it seems that although I am bringing treated for cancer and ultimately the research vulchers want my old lungs to cut-up in their labs, I can't use the Stanford basketball court to walk laps before and after transplant (it is getting cold out here). No fear when one door closes another opens so I found a treadmill for free on my new Ebay which is www.craigslist.org and will put it in my new apartment so I can stay in shape pre/post transplant (the treadmill is most post transplant as I will be wearing a large mask to keep out germs for at least 3/4 months).
Well that is all for now, I know I promised a blog on my initial reaction upon being diagnosed and it will one day be posted but something’s (memories) I don't want to think about right now.
Have a great day
Monday, October 16, 2006
A few poems I really Like
Equipment
by Edgar A. Guest
Figure it out for yourself, my lad,
You've all that the greatest of men have had,
Two arms, two hands, two legs, two eyes;
And a brain to use if you would be wise,
With this equipment they all began.
So start for the top and say
"I can,"Look them over the wise and great,
They take their food from a common plate,
And similar knives and forks they use,
With similar laces they tie their shoes,
The world considers them brave and smart,
But you've all they had when they made their start.
You can triumph and come to skill,
You can be great if you only will
You're well equipped for what fight you choose,
You have arms and legs and a brain to use,
And the man who has risen great deeds
to doBegan his life with no more than you.
You are the handicap you must face,
You are the one who must choose your place
You must say where you want to go,
How much you will study the truth to know;
God has equipped you for life,
but HeLets you decide what you want to be.
Courage must come from the soul within
The man must furnish the will to win.
So figure it out for yourself,
my ladYou were born with all that the great have had,
With your equipment they all began,
Get hold of your self and say, "I can."
Nothing Gold Can Stay
by Robert Frost
Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.
Smoker Fullback it's pain time, baby....wooooooooooo watch the cut block it's coming
Since the last blog entry I got the CT (CAT scan) results from my doctors and as expected no change. I have gone up on my Tarceva dosage to maximum dosage to see what sort of effect this increase will have on the cancer cells. There isn’t really a whole lot more to report right now I am increasing my weights in the gym and looking to do one of the many 5k races around here. I still have the illness I am fighting but every trip to the gym or mile I put in on the track leaves the doctors scratching their heads and destroys the stereo type about what a cancer patient can and can’t do. I really can’t control much right now but I can control my physical activity and quite frankly the YMCA down here needs some new weights because I have gone through all the plates and dumbbells they have and I am still hungry for more.
Oh yea I have a slight chest cold so I had to inform the transplant team so if I get the page they know what I am currently up against. It shouldn’t be a problem as long as I don’t have a fever or this cold isn’t really an infection.
I have been doing a lot of thinking about this procedure and have come to the realization that new lungs (baring any medical complications) can heal my body but my mind will still need some work. I am not crazy, deranged, I am just mad as hell. I am mad when I fight for breath (never having smoked) and I see smokers lighting up not caring where or in what direction their second hand smoke goes. In California there is no smoking in the restaurants, businesses, stores… (you get the picture) however that dose not stop the smokers from lighting up right out side of entrances to such establishments. It physically hurts me to have to walk through this stuff most of the time I just get in my truck and take my business elsewhere but some places I have to patronize (i.e. library, hospital…). With this month being Halloween I am tempted to stop at one of the local costume stores and buy some sort of superhero costume so that I can shoulder tackle these butt heads outside of places where I need to go (office linebacker style). So folks pray for me that I don’t bring the pain on some random smoker it's pain time, baby....wooooooooooo!! (BTW by the way I advocate non-violence).
http://en.wikipedia.org/wiki/Terry_Tate
http://reebok.com.edgesuite.net/lastexit_terrys_world_dsl.wmv
http://video.google.com/videosearch?q=terry+tate
Sorry good people that is it for now (today) I have to hit the gym to my Texas crew now that I am in California my Governor can bench more than your Governor.
My next entries will flashback to my reaction when the news was given to me and the many thoughts that raced through my mind.
Beat cancer on rep at a time. (Gym talk)
Oh yea I have a slight chest cold so I had to inform the transplant team so if I get the page they know what I am currently up against. It shouldn’t be a problem as long as I don’t have a fever or this cold isn’t really an infection.
I have been doing a lot of thinking about this procedure and have come to the realization that new lungs (baring any medical complications) can heal my body but my mind will still need some work. I am not crazy, deranged, I am just mad as hell. I am mad when I fight for breath (never having smoked) and I see smokers lighting up not caring where or in what direction their second hand smoke goes. In California there is no smoking in the restaurants, businesses, stores… (you get the picture) however that dose not stop the smokers from lighting up right out side of entrances to such establishments. It physically hurts me to have to walk through this stuff most of the time I just get in my truck and take my business elsewhere but some places I have to patronize (i.e. library, hospital…). With this month being Halloween I am tempted to stop at one of the local costume stores and buy some sort of superhero costume so that I can shoulder tackle these butt heads outside of places where I need to go (office linebacker style). So folks pray for me that I don’t bring the pain on some random smoker it's pain time, baby....wooooooooooo!! (BTW by the way I advocate non-violence).
http://en.wikipedia.org/wiki/Terry_Tate
http://reebok.com.edgesuite.net/lastexit_terrys_world_dsl.wmv
http://video.google.com/videosearch?q=terry+tate
Sorry good people that is it for now (today) I have to hit the gym to my Texas crew now that I am in California my Governor can bench more than your Governor.
My next entries will flashback to my reaction when the news was given to me and the many thoughts that raced through my mind.
Beat cancer on rep at a time. (Gym talk)
Quick Post
Pardon the interruption this is just a quick post as I sit in the doctors office waiting on the results from my last CT (Cat Scan). This will tell us how well the Tarceva (oral cancer pill) is working on my Bronchioloalveolar Carcinoma (BAC).
Thanks for all the feedback I will try to update as much as possible.
I am assuming that either the results will be positive and I am showing improvement. I am making this assumption based on the fact that if I was getting worse I would have heard from my doctors as the CT was done almost two weeks ago.
Oh yea and no I did not hack into the hospital computer systems, they have computers in all the hospital rooms so we can multi-task; Silicon Valley you gotta love it. Athoriti (spelled wrong on purpose)
Thanks for all the feedback I will try to update as much as possible.
I am assuming that either the results will be positive and I am showing improvement. I am making this assumption based on the fact that if I was getting worse I would have heard from my doctors as the CT was done almost two weeks ago.
Oh yea and no I did not hack into the hospital computer systems, they have computers in all the hospital rooms so we can multi-task; Silicon Valley you gotta love it. Athoriti (spelled wrong on purpose)
Sunday, October 15, 2006
Hello World (My First Blog)
Hello World, You have dialed in and found my Blog an idea I have kicked around since I was diagnosed with terminal non-smokers lung cancer earlier this year (02/01/06). My goal is that through my experience (the good the bad and the down right ugly) I will be able to help someone that might find themselves in a similar predicament. The format for this blog will center around my medical condition (treatments, feelings, diet, exercise, medical myths, and medical mistakes…..). I will try to the best of my ability to censor my comments so I don’t discuss my work and my family at great length. With all that said let’s begin shall we.
I am obviously a non-smoker I never smoked although I did buy a cigar when I graduated (no honors) from college in 1997. I subsequently lit said cigar let it burn put it to my mouth but did not inhale (dry lung cancer humor). I don’t drink although I did have several beers with some of my offensive lineman, and some of the d-line, and linebackers, and d-backs (uh we drunk beers a lot freshman football um intake process). I learned from the beer drinking that I don’t have a taste for alcohol, that I couldn’t afford it (poor college kid), and that I really liked to be in control of my body at all times. For those very observant readers you might have gathered that I am an athlete track and football through college (football scholarship). The scene that I am trying to set is one that raises the question how the heck did you get lung cancer (I don’t know). I was subject to second hand smoke growing up but if that is the case my siblings would have probably gotten the same cancer (they are cancer free thank GOD). I am a medical mystery and my condition redefines what these rookie doctors learn everyday. Given that I am at Stage 4 (I am supposed to be on oxygen) well I am not on oxygen, I work out hard at least 4 – 5 times a week (reverting to my bachelor days since my wife and daughters are not here with me as I await some new lungs).
Cancer stinks it sucks no one deserves it but you can’t let it beat you (the medicine will do that) you have to fight for every breath because they are so precious. The doctors tell me I have cancer and looking at the x-rays and seeing the huge chemo-port-o-cath that bulges from beneath my skin of my chest I think they are half right with the diagnoses. I have cancer but cancer doesn’t have me.
Well that is it for this first blog my intro of sorts. I hope all enjoyed and will continue this journey with me. Future blogs will be broken down into to sections the first will be called current (containing info about what is going on now) the next will be called Flashback (random glimpse back to treatment I have had since I was diagnosed 02/01/06 and misdiagnosed from at least 2001 on; this section fill in the blanks that existed prior to starting this blog.
Warning: My grammar is horrible (I am lettered but not learned) my spelling is terrible so be forewarned. I may also become vulgar is some of my language as I am truly in the moment and giving you all my raw emotions.
GOD Bless
I am obviously a non-smoker I never smoked although I did buy a cigar when I graduated (no honors) from college in 1997. I subsequently lit said cigar let it burn put it to my mouth but did not inhale (dry lung cancer humor). I don’t drink although I did have several beers with some of my offensive lineman, and some of the d-line, and linebackers, and d-backs (uh we drunk beers a lot freshman football um intake process). I learned from the beer drinking that I don’t have a taste for alcohol, that I couldn’t afford it (poor college kid), and that I really liked to be in control of my body at all times. For those very observant readers you might have gathered that I am an athlete track and football through college (football scholarship). The scene that I am trying to set is one that raises the question how the heck did you get lung cancer (I don’t know). I was subject to second hand smoke growing up but if that is the case my siblings would have probably gotten the same cancer (they are cancer free thank GOD). I am a medical mystery and my condition redefines what these rookie doctors learn everyday. Given that I am at Stage 4 (I am supposed to be on oxygen) well I am not on oxygen, I work out hard at least 4 – 5 times a week (reverting to my bachelor days since my wife and daughters are not here with me as I await some new lungs).
Cancer stinks it sucks no one deserves it but you can’t let it beat you (the medicine will do that) you have to fight for every breath because they are so precious. The doctors tell me I have cancer and looking at the x-rays and seeing the huge chemo-port-o-cath that bulges from beneath my skin of my chest I think they are half right with the diagnoses. I have cancer but cancer doesn’t have me.
Well that is it for this first blog my intro of sorts. I hope all enjoyed and will continue this journey with me. Future blogs will be broken down into to sections the first will be called current (containing info about what is going on now) the next will be called Flashback (random glimpse back to treatment I have had since I was diagnosed 02/01/06 and misdiagnosed from at least 2001 on; this section fill in the blanks that existed prior to starting this blog.
Warning: My grammar is horrible (I am lettered but not learned) my spelling is terrible so be forewarned. I may also become vulgar is some of my language as I am truly in the moment and giving you all my raw emotions.
GOD Bless
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