We’re talking small
Before I get into all the gory details of everything that transpired at the NIH clinical trial last week, I wanted to share my unique lodging experience at the Bolger Hotel & Conference Center, which was originally constructed in the early 1980s as a training facility for U.S. Postal Service employees, and recently taken over by the Dolce Hotels and Resorts group. Given that hotel rooms in the vicinity of the NIH are at a premium in terms of both availability and price, and that the lodging stipend extended to trial participants is a modest $50/night, I felt very fortunate to happen upon this hotel, given that it’s a mere five miles from the NIH yet runs barely a few bucks more than the stipend amount. Plus, it’s located on 83 acres of private forested grounds with a 1.5 mile walking/jogging trail, two fitness centers and a pool, and–most importantly–complimentary wired and wireless Internet access.
So what’s not to like? Well… because it’s more of a conference center than it is a hotel, it was lacking in a lot of the typical amenities common to most hotels. Like employees, and room service, and vending machines, and a place to purchase goods and sundries, and a mini-fridge or microwave in the room; those sorts of things. Perhaps that’s because there was literally no room in the room to accommodate even the smallest of appliances–or anything else for that matter.
I’m certainly not the “road warrior” type who’s stayed in hundreds of hotels as a function of my job, but I have done quite a bit of traveling over the years, and I have to say, I’ve never seen a hotel room as small as this one. It was essentially the size of the bed (a double), with just enough space added on either side to be able to get in and out of it. There was a padded desk chair and a very shallow desk at which to work, but it was virtually impossible to move the chair back far enough to get up without being blocked by the foot of the bed, so I had to crab-walk the chair sideways towards the bathroom in order to escape.
As the extremely polite and professional front desk clerk informed me, since the rooms were originally designed to house hundreds of postal employees for training purposes, the emphasis was on efficiency, not on spaciousness or comfort. Given that I wasn’t there for a vacation, and that everything else about the place was more than satisfactory, I’lll just have to remember to request the room dimensions next time I’m ready to book my hotel for an upcoming clinical trial 😉 Come to think of it, maybe now we have a more definitive explanation for the phenomenon known as “going postal.”
Officially known as the Chronic Graft vs. Host Disease (cGVHD) Natural History Protocol, the trial in which I participated began way back in 2004 and will continue until the investigators have seen approximately 600 cGVHD patients. Only one participant per week takes part in the festivities, so I was feeling very special as all the physicians, investigators and techs were totally focused on me for the entire four-day period. The schedule of tests and consults was extremely tight and allowed very little room for error, much less for eating lunch or returning emails, but everything needs to be completed in that period of time as they don’t want to be dragging participants back there for any do-overs. Besides, in the immortal words of Gordon Gekko: “Lunch? You gotta be kidding. Lunch is for wimps.”
Things started off less than auspiciously before I ever got inside the hospital; the NIH is a Federal facility and as such they are required to (very thoroughly) inspect every vehicle that enters, and of course mine is always filled with boxes and boxes of computer parts and audio cables and hard drives and all manner of tech paraphernalia that would have had to be taken out of the van and individually X-rayed by the security staff ;-( A very helpful member of their team suggested I simply back out, find a space on the street and walk in, which turned out to be my modus operandi for the entire week. Otherwise, my schedule would probably have blown before the trial even got started.
Speaking of the schedule, I was typically looking at, on average, three specialist consults and 2-3 diagnostic tests in the course of a given day. Fortunately everything took place inside the NIH Clinical Center building, which is unabashedly massive, but very well signed in terms of locating specific clinics and testing areas, and although there are 13 floors in the building (or perhaps because of it) the elevators were as fast as my hotel room was small. The Center is the largest hospital in the U.S. devoted entirely to clinical research, and nearly half a million trial participants have come through since it opened in 1953.
One thing that particularly struck me at the outset–and all the way through the gauntlet of tests and consults–was how polite, caring and helpful the specialists, techs and support staff were. Given that the NIH is a government facility, I have to confess that I expected to be confronted, at least in some instances, with the less than optimal attitude and effort all too often exhibited by your typical bureaucrat/government employee. Like, say, a U.S. Postal Service employee trained at a facility in a room the size of, er, a postage stamp… So you can all rest assured that, at least in this, your tax dollars are well served.
Another pleasant surprise was the degree to which the study was constructed to aid each participant with their current cGVHD issues and symptoms. I had assumed that for the most part the techs would be taking blood (26 vials on day #1 and 13 more on day #4) and administering diagnostic tests, and the specialists would be examining and quizzing me, in order to derive as much data from me as they possibly could for purposes of the study. Anything I could glean from the experience for my own benefit would be up to me in terms of taking careful notes and quizzing my tormentors at length whenever time permitted.
Yet in the course of virtually every test and consult, I was provided with all manner of unsolicited and highly personalized advice on the spot. Further, on Friday, Dec. 6th, the specialists with whom I met will assemble as one to “rigorously” review my test results, along with their own individual observations, and will then make specific recommendations to Dr. Strair, my lead physician at the Cancer Institute. I will also be provided with all my records and test results following their meeting, and they will recommend any applicable current clinical trials, as well as whichever studies may come along over the next 5-10 years that could potentially be of value, given my specific set of cGVHD issues.
Dr. Pavletic, the lead investigator, examined me on the first day and indicated that, based on his preliminary look at my history and symptoms, everything looks positive for me to eventually overcome this. His experience is that the average time to complete remission of cGVHD symptoms, to the point where no more steroids are required, is between two and three years from the transplant date. So now I have another target date to beat; since I was sprung from both my hospital stays much sooner than the docs or I expected, I’ll just have to get past this faster too 😉
Overall, I feel incredibly fortunate that I virtually stumbled on this trial while poking around online, and was able to schedule it almost precisely at the one-year mark, which dovetails very nicely in terms of getting a raft of “free” tests that I would have needed to undergo at the Cancer Institute this week. I do still need to receive all my childhood immunizations again starting next week, since the transplant basically wiped clean any immunities conferred on me by virtue of being immunized as a child, or by actually contracting a particular virus like the measles, which in and of itself confers immunity to that specific virus going forward. In short, I am now a tabula rasa–a blank slate–in terms of my disease and immunization history. One could even say I’m now more like a one-year old child than a 51-year old man, at least from an immune system standpoint. Given my experiences over the past couple of years, I can think of a lot worse things to be…
Following are all the tests and consults that were shoehorned into the four days, for those of you who enjoy minutiae or just like reading lists. If you’re not of that ilk, maybe you’ll simply want to belt out a few verses of that classic bloodletting round, “39 Vials Of Blood.” C’mon, you know the words…
39 vials of blood, is that all?
39 vials of blood?
It’s just for the trial
We need six more vials…
39 vials of blood, is that all?
The Diagnostic Tests
- Bone Density Scan (wrist/spine/hip)
- Chest CT
- Pulmonary Function Test
- MRI (upper thighs, bilateral)
- Abdominal Ultrasound
The Specialist Consults
- Pain, Palliative Care And Symptom Management
- Rehabilitation Medicine
- Quality Of Life Assessment
- Social Worker
- Occupational Therapy
- Venous Assessment
- Skin-Punch Biopsies (6mm left arm, 2 stitches; 4mm inside left cheek)
- Full-Body Photography
Gil 2.0 (w props to elaine) … I won’t go so far as to say I’m glad you got cancer so we could experience more of your musings, but I will say it’s been an unintended but happy consequence. And you are probably the only person I know who can say you literally gave blood for your craft. Now to monetize that skill … Hmm, perhaps sell subscriptions to your blog? I’ll keep noodling. xoxo
Thanks for keeping us in the loop. So very pleased to hear that your prognosis for beating cGVHD looks good and you are on track to ditch those pesky steroids. Meanwhile, sending you the mental image (no documentation of this on the web!) of one of those late 1970s posters of the cat on a barbell…”Hang in there baby!” You are on the home stretch.
Sounds like quite the experience Gil. I hope you are feeling well.
Have you ever thought about putting this all in a book? Seriously. I have learned so much from following your posts, and you put it all in a style that is easy to read, and makes me want to read and learn more.
dear Gil 2.0, or should i address you as Mr. Rasa, Tabula Rasa? of course, of course, of course the news is fabulous! but the experience itself, what a gift! i find it hard to believe that the trials are such a well-kept secret. so lucky you, that you stumbled across them. i’m sure, as others have suggested, that there is a best seller in your future. keep up the good healing! ♥
Just think: maybe the roots of all the problems with the Postal Service are that for years their people were trained where the rooms were too small to turn around. But I digress…
Glad to hear that it was a productive and interesting week even though you were poked, punched and drained relentlessly. The fact that you got such an encouraging preliminary assessment must have made it all worthwhile. Keep it up!
I’m so happy to hear you’re doing so well. And as always, helping others along the way. You deserve a super deluxe hotel room with room service!
keep up the positive spirit….I’ll never complain about a slow download again. Thanks for the reminder about what’s important. Prayers and salutations.
Why do I look forward to your miserable escapades so much? Because you’re such a damn good writer, that’s why. I especially love the “everything looks positive” part.
So glad to get this update and the positivity that runs through it! I agree with Anita: we may not have otherwise been aware of your writing abilities and so another silver lining. I hope that you continue to document this journey.
Isn’t it great relief to know your symptoms are all perfectly normal (arghhhhhh) and that your progress is in fact excellent. One thing for sure is you have not lost any piece if your incredible sense of humor. And ability to write up your life experiences. Thank you for good report and news. We’re pullin for ya.
Gil, I’ve known and worked with you for more than 20 years and it’s never been more of an honor and pleasure to have known you. You’re an inspiration and help to so many of us. The Jewish people have a great three-part blessing that ends the service and we Catholics have it too. It starts “May the Lord bless you and keep you.” Be seeing you soon.
Thanks for these postings.
The postings might bring some of us uncomfortably close to that creeping sense of mortality, and yet … and yet … the information you pack in, the vivid descriptions, and your positive spirit (elan is how the French would describe it) are so reassuring.
On a more mundane note, from your mention of discovering this “trial” on your own, I infer that your good doctors were not aware of this? Somewhat surprising? Or not.
Hi Gil, You really are a WRITER! I live with one, have a daughter who is one, am sort of one (The Pumpkin Smasher & is selling well!) and in this town I’m surrounded by them, so I think I can recognize one when I “see” one.
What a Story!
“…now more like a one-year old child….” What else is new? Another life experience! Encouraging prognosis! “Take one down and pass it around… 38 vials of blood in the lab….”
Gil these reports must be put together, at the very least for your doctors, who must adore you, and those of us who know and also adore/admire you. …..not to mention the tremendous help this would be for anyone else who is afflicted….informative as well as damned entertaining!!!
Wow. You did not say “Mac” or “Apple” once.
Computer by default means Mac- as in “Kraft Computer and cheese”. Jeesh
Wow. I’d prefer to go thru the blood part comatose. But your prognosis is fantastic. What incredible strides they’ve made — and you’ve made. Stunning.