August 2, 2005 2:01 AM
I don't normally talk much about my personal life here.. this is a personal blog, certainly, but not a diary. That being said... I got some bad news today.
For the last couple of years I've had problems breathing. It's been overshadowed by other health problems, and has even appeared to go away for a time, but in the last six months -- after I dealt with all the other problems -- I was left with a dry cough and a steadily deteriorating ability to breathe. To the point I'm at today where I get severely short of breath just taking a shower, or walking up one flight of steps.
After much pressure from those close to me, I went to a pulmonary specialist a week ago. He immediately honed in on the problem, identifying that my lungs are restricted.. ie, it's not asthma. I had a CT scan and X-ray last week, tracked down an old CT scan from 6-7 years ago to compare it to, and today I came back for my results.
There's a substantial amount of scarring in the upper part of both my lungs which is restricting my lung capacity to about 25% of what it should be. The question is what is causing this, and to quote my doctor "whether we can reverse the process."
I haven't talked much about my two bouts of cancer here... Here's the super-short condensed version. In 1996, I was diagnosed with t-cell lymphoblastic lymphoma, which is a rare form of non-Hodgkin's lymphoma. Basically I had crab-grass growing around my lungs giving off fluid which, by the time I was eventually hospitalized, had grown to several liters around my heart and lungs. 9 months of chemotherapy later, I was clean. 6 months after that I was diagnosed with acute lymphoblastic leukemia (better known as ALL). The same cancer, only it was now in my blood stream instead of my lymphatic system, which changed its name to leukemia. Massive amounts of chemotherapy and radiation led to a bone marrow transplant from an unrelated donor found through the national marrow donor program. The transplant was a huge success, and I was back at work within 6 weeks.
Restrictive lung disease can happen for a variety of reasons, but due to my history, it's probably one of the three things that saved my life: 1. the chemo, 2. the radiation, or 3. the bone marrow transplant. The doctor needs to do a biopsy (get a piece) of the scar tissue and run some tests on it. First, he is going to present my case to the pulmonary board at Cedars Sinai to get their feedback.. we will meet in a week and figure out how best to do the biopsy. In the meantime, I'm tracking down as much of my old medical record as I can.
I don't know much right now, except that this is scarring.. meaning it's permanent and not something that just goes away. I will never have normal lungs or be able to run a mile or anything. The question is whether the scarring can be stopped, and the scar tissue that is already there can be reduced at all. That depends a lot on what is found in the biopsy. I think the best case scenario is if this is due to an inflammation -- something that can be treated pretty easily.
When the cure becomes the disease (08.02.2005)
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NJGuardsman: NEW
Mr Gilliam,
Although we differ greatly in our political ideology, I wish you strength in this trial in your life, best wishes for a speedy recovery and please know I will keep you in my prayers!
I could say a lot about this issue, I will not… stain this blog with anything political unless someone else decides to.
Tue Aug 2 2005 7:19 AM
Stephen Shields: NEW
Jim,
I'll be talking to God ab this.
Stephen
Tue Aug 2 2005 7:41 AM
tomaig: NEW
Scary stuff, even without the 2 bouts with cancer.
You're a brave fellow, JG.
Gather those rosebuds.....
Tue Aug 2 2005 9:58 AM
Right Wing Robby: NEW
Hope you feel better.
Tue Aug 2 2005 10:23 AM
J: NEW
Hope you make a speedy recovery.
You are brave indeed.
Tue Aug 2 2005 12:38 PM
Andrew: NEW
Jim,
As a cancer survivor I can really feel what you are going through. Every trip to the doctor feels almost like russian roulette. LiveStrong and live well, all things will resolve themselves.-Andrew
Tue Aug 2 2005 2:34 PM
Austin Burbridge: NEW
Dear Jim, I am sorry to read your distressing news.
With sincere best wishes for the best possible outcome --
Regards,
A U S T I N ,
Cinema Minima
Tue Aug 2 2005 3:18 PM
will: NEW
Jim,
Praying.
Tue Aug 2 2005 10:34 PM
Dave E.: NEW
If anyone has the spirit to overcome, it's somebody that gets off their ass and fights for what they believe in despite the odds. Obviously, you've got that down cold.
You've got all the intangibles you need to take this bull by the horns and drag it to the ground with impunity.
Please try to keep us posted as we think of you.
Wed Aug 3 2005 12:47 AM
Jim Gilliam: NEW
Thank you! For the prayers, emails, thoughts and inspiration.
Mon Aug 8 2005 12:52 PM
aunt kim: NEW
hey you. i'm so sorry to hear this latest news. then again, thank god you went to the doctor and you can now focus on the cure/remedy. i remember you lying in that hospital bed (well, most of you, your feet hung off the end) during the bone marrow process. there were several times during those days that i thought you had died - you were so still and pale. but of course, i was wrong. now i know you were just preserving your strength for the fight. in spite of the slimmest oddshere you are. and, righting the world's social evils. i know you are going to be fine. i know it. but it sucks. i love you. can i help????????? anything. aunt kim
ps. i know how you love the mushy stuff. have i humiliated you???
Tue Aug 9 2005 8:55 PM
Macgrath: NEW
Presence of some pathology or abnormality in a part of the body. Bacteria and viruses cause many such diseases Tolerance – In pharmacology, the ability to tolerate larger and larger doses of a drug after each exposure to it.
Tue Feb 14 2006 11:20 PM
Learn more about me or read my blog. For the latest on my lung transplant situation, check on jim.
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