The new abnormal; or, “stuck” in Bethesda

Yes, it’s that special time of year again, when our thoughts naturally turn to things like vampires, dripping blood, terrified screams in the darkness, the donning of masks and the reanimation of dead tissue. I’m speaking, of course, about the one-year anniversary of my stem cell transplant, which in the most bizarre of coincidences happens to fall precisely on All Hallows’ Eve. Since it’s been a whole year now, I would like to report to you that all’s well that ends well, as they say, and we move on.

The truth is… a bit more complicated than that.

Approximately half of those who receive human stem call transplants (HSCTs)–and that half includes me–are affected to some degree by what the docs call chronic graft vs. host disease, or cGVHD. Put simply, in any transplant situation, even stem cell/bone marrow transplants, the organ that is transplanted is the “graft” and the recipient of said graft is the “host.”

Ideally, the graft (let’s say a donated kidney) and the host get on more or less famously (given that the recipient is maintained on the proper regimen of anti-rejection drugs, of course), and the new kidney lives happily ever after in the abdominal cavity of the host. Occasionally the graft is rejected, which would be a “host vs. graft” situation, and in that event the kidney may need to be removed and it’s back to square one–or kidney #2.

In the case of HSCTs, the host is not just receiving new and hopefully cancer-free stem cells/bone marrow, but because a good chunk of the immune system (every white blood cell in the body, for starters) is created by the new bone marrow, any incompatibility between the transplanted stem cells and the recipient constitutes a “graft vs. host” as opposed to “host vs. graft” situation.

In other words, using someone near and dear to me as an example–namely, me–I’m not rejecting the transplant so much as the transplant is rejecting me. But since the transplant is me now, we can break it down to the point where we can simply say: I’m rejecting me. Now there’s a Hallmark Halloween special for you…

Most HSCT recipients actually experience acute GVHD in the form of a nasty skin rash within a few weeks to a few months after the transplant, and that is not only expected but represents a positive signal that the transpalnt is “working” because it’s attacking what it perceives to be foreign invaders, even though they are just normal ‘host” cells. Typically this acute reaction subsides fairly quickly and the recipient is free to graduate to more pressing matters, such as fighting with their health insurance company and growing back their hair after the chemo regimens.

In the case of chronic GVHD sufferers, the effects linger and can cause all sorts of damage to everything from eyes to liver if left unchecked. A whopping dose of corticosteroids (typically Prednisone) is the weapon of choice against cGVHD, although steroids carry their own side effects (“moonface,” osteoporosis, nasty mood swings, significant weight gain, etc.) so they are not a viable long-term solution.

Then again, they sure beat suffering the cGHVD issues like severely dry eyes, blurred vision, inflamed mouth and throat, major gastrointestinal problems (the specifics of which I’ll graciously spare you), skin rash/tightening/thickening, muscle weakness, chronic pain and a sudden inability to compose brief, succinct email messages.

All of which finally brings us to the reason for this uplifting Halloween greeting. The National Institutes of Health in Bethesda, MD is home to an ongoing cGVHD clinical trial conducted by my new personal hero, Dr. Steven Pavletic, who is on a mission to help chronic GVHD sufferers by first quantifying the issues we face and then assembling that data so that whatever other treatments may be out there, or have yet to be developed, can be assembled and brought to bear against what he insightfully describes as a “man-made” disease.

Now, how exactly will he gather all this data? Folks like me will travel down to the NIH and for four straight days, we’ll submit to being prodded, poked, stuck, scanned, imaged, and questioned relentlessly until we cry “uncle.” Or until Friday at 3:00, whichever comes first.

In return, I get access to all the test results so I can see precisely how much damage has or has not been done to date, my docs at RWJ get a full report on my condition and therefore don’t need to run the standard one year post-transplant tests they would normally conduct on me because they will all be done for “free” at the trial. To say nothing of the fact that I will be afforded the opportunity to quiz some of the leading physicians in their fields as to which GVHD treatments are out there now, which are on the horizon, and which might be most helpful to me in particular. And I’m helping future transplant patients, who will certainly benefit from the information gleaned from all of us.

To give you an idea of the scope of the trial, I’ll be evaluated by an ophthalmologist, a dentist, an immunologist, a physical therapist, a neurologist, a dermatologist, an oncologist, an osteopath, an occupational therapist, and a cardiologist, all leading physicians in their fields and all extremely conversant with GVHD. And that’s just on Wednesday 😉

OK, those consults are actually spread out over four days, but given that I’ve also got quality of life assessments, meetings with Dr. Pavletic and the other investigators, a consult with a pain management specialist, a pulmonary function test and a 2-hour leukapheresis session (blood goes out, blood goes back in), the schedule is pretty grueling…

The excitement starts Tuesday, Nov. 5th at 7 AM at the NIH’s Clinical Center, which–in spite of the best efforts of our esteemed House of Representatives–is once again open for business, with the poking and prodding finally winding down late Friday afternoon. For those of you who may require personalized technical assistance during this time, rest assured that I will be accompanied by a full complement of computers and iDevices and will respond to your inquiries post haste, given that there will be moments throughout the week when I expect to be, shall we say, indisposed.

So, bring it on, as they say, and let the chips fall where they may. If psychotic slasher Michael Myers of “Halloween” movie fame can survive falling from a balcony, being shot and/or stabbed innumerable times, caught in a gas explosion, buried in a mine shaft, beaten with a lead pipe and electrocuted by Busta Rhymes over the course of the original film and no fewer than eight sequels, I figure I can handle a few biopsies and an MRI or two and still escape in the final reel…

==================================================================

The man of the hour, a.k.a. Steven Z. Pavletic, M.D., M.S.:
http://ccr.cancer.gov/staff/staff.asp?profileid=8479

The trial of the century, a.k.a. “Factors Determining Outcomes in Patients With Graft-Versus-Host Disease”:
http://www.cancer.gov/clinicaltrials/search/view?cdrid=714145&version=HealthProfessional&protocolsearchid=12096388

20 Comments

  1. Thinking of you today as you start your grueling week! Good luck!

  2. Gill,

    You contribution to us all on both a technical and medical level is significant and appreciated. Thank you for educating your readers as well as your physicians, while doing so with your own style of humor. Stay strong and enjoy the beauty of this superb bright autumn day!

    Regards,

    Peter J. Young
    Rapp Advertising
    +1 973 467 5570 ext. 17

  3. Gil. We will be thinking of you and sending our positive thoughts your way. What a rough year it’s been! Stay strong and positive – we know you have the humor part covered!
    Kathy & Nick

  4. Hi Gil: I’m glad you sent this to me again. It was worth reading and a good piece of writing. Good you are keeping record in this way. I’ll be thinking of you and sending vibes that all will go very well.

    Toni

  5. Gil, You Are Incredible! In 1980 I had thyroid cancer surgery & wound up selling illustrations I did of my room at Hahnemann Hospital to the alumni magazine. Your story is definitely magazine worthy…..it has it all….humor, narrative tension and is surely a” page turner”.
    How about emailing it to LIVES,The New York Times Sunday magazine section, email address lives@nytimes.com
    Keep us posted, Anita & Mel

  6. Our positive thoughts are with you Gil. Good luck!

  7. Your communications are truly special. Hope you’re keeping them all because there’s a book in there!
    Warm wishes!

  8. I didn’t get it two times

  9. I didn’t get it twice

  10. Dr. Gil,
    This is a rather unusual way to earn an MD, but then you are really one unusual man. Thanks so much for sharing and educating us as well.
    Very, very best,
    Marion

  11. Hey Gil,

    My prayers are with you. You are one tough sonofagun!

    Best,

    Joe

  12. gil my friend I wish you all the best, if anyone deserves it you do. let you know my wife is finally doing good. I know you will combat what ever is trown your way. my prayers are always with you

    bill & Sharon Gale

  13. All the best Gil! Our thoughts, prayers and IT requirements are always with you!

  14. elaine kilcullen

    30 October 2013 at 11:55 am

    I beg to differ, your “sudden inability to compose brief, succinct email messages” was installed with the original Gil 1.0. and for that we are grateful. we get to experience second hand, much of what you’re going through. all the while increasing our medical knowledge. Rock on, Gil 2.0

  15. The gang at Erbach is thinking of you! Good luck!

  16. Sending positive thoughts your way! You’re incredible!

  17. Hey Gil…. Maybe you should get all this on video so we can scare the hell out of ourselves on future, more boring (All Hallows) anniversaries – many of them! Good Luck!

  18. Sounds intense, but i know good things can only happen to “God”!!! The Ardente’s are rooting for ya and sending prayers for all good results and treatment!!!!!! xox

  19. Best of luck to you — your willingness to share your story, and the style in which you present it, is to be commended!

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