August 11, 2005 5:30 AM
Saw the doctor today...there appears to be two problems.
1. radiation fibrosis -- "generally untreatable" scarring of the lungs due to radiation. This is progressing right now at an unknown rate. It is late onset -- it's not on any of the scans from 1-2 years after my radiation treatment. But this doesn't appear to be the whole story because according to the recent scans, only 40% of my lungs are scarred, so I should have 60% of my lung capacity, not 25% that the pulmonary function tests indicate. Which means..
2. something else is probably going on. I will almost certainly need a biopsy on the scar tissue to find out what it is. The doctor will make a final call on whether to do the biopsy in about a week, to be scheduled shortly thereafter. I'd be in the hospital for 3-4 days, which was a shock -- way more than I expected for a biopsy. I guess any lung surgery is a pretty big deal.
Basically, the doctor is hoping he can find a #2 that he can actually treat. A treatment may include steroids and/or chemo. Whether that would even work is up in the air. It's all speculation without a diagnosis on #2. His goal is to get me to the point where I can function somewhat normally. I won't be able to run, but hopefully I will be able to walk up a flight of stairs without much trouble.
Then he mentioned I might end up being a good candidate for a lung transplant.
Whoa.
The biggest problem for me in this scenario is that for my body to accept the lung, they would have to dramatically suppress my immune system, leaving me wide open to infections and tumors, particularly because of my cancer history. So I may not even qualify.
I looked up the stats on lung transplant survival rates for radiation fibrosis: 87.8% make it 3 months, 76.1% make it a year, 54.2% make it three years, and 39.1% make it five years. However, CyIS therapy (delivering cyclosporine directly to the lungs) has been shown to increase the four-year survival rate to 84%. It's currently under review by the FDA. It's the first major breakthrough in lung transplant survival rates. Unfortunately, it also weakens ones' immune system.
Then I found that "good lung transplant candidates" generally have a "limited life expectancy of less than two years." Before, uh, freaking out, I called the doctor. He doesn't have enough information to be able to say how long I've got (well, duh), but that it's "not going to be thirty years."
Ever since the second round of cancer, I've felt pretty certain I wasn't going to live as long as most people. But to actually know that, at least to some certainty, is a very strange feeling that I haven't quite processed yet. What's really creepy is that I've thought for years that I wouldn't live past 30. I'm 2 months shy of 28 years old. Life is short.
But it's way too soon to talk about that. We're all going to die, my date just got a little closer and a little more certain.
There is some good news... I can cash out my 401k.
I'm gonna die young (08.11.2005)
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Dhermesc:
That sucks all the way around. Hopes and prayers go with you.
Thu Aug 11 2005 8:56 AM
J:
I am SO sorry to hear about this. I don't really have the appropriate words to express how sorry I am. You are a brilliant man and we need you around as long as scientifically and humanly possible. You're braver than anyone I know and I desperately hope you are here for a long time to come...
Thu Aug 11 2005 11:46 AM
Mike of the Great White North:
I really don't know what to say... im going through a feeling of 'its just not fair', and also thinking of my own mortality right now.
No one should have to know they're going to die within such and such a date. You are braver than you know.
As an aside... have you gotton any 2nd or 3rd opinions... or checked out Cancer Treatment Centers of America?
http://www.cancercenter.com/Good luck Jim.
Thu Aug 11 2005 12:43 PM
SView:
I enjoy your blog and I'm looking forward to reading long in the future.
Best Wishes
Thu Aug 11 2005 2:29 PM
Dave E.:
"...I can cash out my 401k."
Levity is the only way I've ever known how to plow through "not so good" news. Granted, this is a whole different galaxy of "not so good" news, but good to see you can still crack a joke under such circumstances.
To echo Mike, I'm sure you've been exploring different specialists from around the medical community. You never know...you might stumble across that one hardly-known, 'nichey' treatment developed by Dr. Pflugenstrutten, from some remote scandinavian country.
Thu Aug 11 2005 3:36 PM
Right Wing Robby:
Jim,
Although you got hit with terrible news, the type or news a person who hasnt been there cant even imagine, I hope you can stay positive.
History is littered with stories of people who beat the odds. And in all the stories you have read of people beating the odds, there is one common thread. All those people never gave up and stayed positive. Its easy for me to say, and unimaginably difficult for you to even think about. But you have no choice do you?
You're gonna beat this. Drill that into your head.
The bad news is, Im gonna have to read your liberal crap for many years to come.
Thu Aug 11 2005 4:15 PM
deborah:
Jim,
I believe that love and prayer can work miracles.I'm the first News Hound to hear this heart wrenching news and I want you to know that your 8 Blog Moms love you deeply and we can't possibly let anything happen to you.
Thu Aug 11 2005 4:17 PM
Jimdear,
Please get yourself the best care available and let us know if there's anything, ANYTHING, we can do. We all love you a lot.
Stay positive and eat raw, esp. watermelon and lemons. Really.
xo
Chrish
Thu Aug 11 2005 4:43 PM
Anonymous:
Blogfather,
This sucks, big time.
I'll pray for you everyday.
Love,
Judy
Thu Aug 11 2005 9:32 PM
Bro, I'm sorry to hear this news.
I will keep you in my thoughts and prayers.Aaron Flores
Fri Aug 12 2005 11:39 AM
friend of will's - will be praying here too. especially every time i drive by walmart - i will use that store to remind me of your story.
Sat Aug 13 2005 6:50 AM
Anonymous:
So see? Something good CAN come out of Walmart! I am a praying friend of Will's, too, with several Walmarts in my path to remind me...
Sat Aug 13 2005 9:57 AM
aaron:
im really sorry to hear about that man. i really wish i could help you. but all i can say is live life for everything its worth... youll stay in my prayers
Mon Aug 15 2005 4:54 PM
christopher:
jim,
very sorry to read about this. but it's good to see you're willing to pursue other options than chemo. my dad is an alternative medicine doctor who may or may not be able to help you, but if he cannot, he would certainly be able to point you to some vvery good doctors who do "alternative" treatments.
i'll do whatever i can to find out more information for you.
peace.
Tue Aug 16 2005 3:21 PM
jim, this is alarming. I have been and will be talking to God ab this.
Tue Aug 16 2005 11:13 PM
If youAreNotReligious Then
premise: your brain ceases to work
premise: you forget everyonething you once know
conclusion: once you are dead, you know nothing you once knowpremise: according to Berkeley, you only know things from your senses
premise: your senses doesn't work when you are dead
conclusion:
life is so pointless
there is no point in living
there is no difference in living for 2 years and 80 years cuz you'll dieimmortality is the only way to
you need to be immortal somehowi need to be immortal somehow too
i need to be godit is better for me to believe in immortality
if i was on a cliff and i believe i can jump to the other side.. according to Philosopher James
i will be god
you'll seeElse If youAreReligious Then
God bless you
you will get into heaven cuz your so awesomeEnd If
Sat Feb 24 2007 2:00 AM
on my second conclusion i did not finish the conclusion/ argument cuz there is no need to + i got the James argument thing to back me up
Sat Feb 24 2007 2:02 AM
btw all the best luck to you
you are awesome guy
seriously man you are my hero kinda
Sat Feb 24 2007 2:04 AM
Ontologiest:
pascal's wager, man
if one got one in a few billion odds of being invincible and immortal; god-likeif one try to become immortal and god-like
case one: becomes immortal: infinite gain
case two: not immortal, dies: finite lossif one not try to be immortal and god-like
case one: not immortal, dies: finite loss
so even if one in a few trillion chance of succeeding to be immortal..
ok i should shut up now
you probably think i'm insaneanyways you are awesome, man
Sat Feb 24 2007 2:17 AM
Norman:
I think I'm gonna die soon, I have a bumps inside my chest on both sides and i get weird pinching stomach pains, I also have a ball like feeling in the back on my head, could be a tumor, I am to scared to go to the doctor to find out this bad news, Im scared too, I'm only 19!!
Sat Mar 10 2007 3:10 AM
Alan:
i feel sorry for you :(
i beieve we come back as another person when we diehope your ok mate.
Thu May 24 2007 2:20 PM
ABBY:
I think I'm gonna die young too.. Like Norman, I'm to scared to go to the doctor.. I have lost half of my sight in my left eye.. And Just today I found a weird ball in my neck, that's why I google "I'm gonna die young" So I could feel a little supourt..I'm 20..
Wed Jun 27 2007 8:50 PM
deanna:
i just want to know the truth of when i am gonna die b/c i am worryed about it ok....so if u would please just tell me when i would really appriciate that ok....thanx
Sat Aug 4 2007 8:36 PM
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