So this is why I am not really a good blogger. I started this post on Tuesday, since there was some material specific to that day, and here I am still writing on Thursday. Granted I was a little busy, but a blog is supposed to be a quick, timely read, not War and Peace. So as quickly as I can, here's what has unfolded in the last 48-72 hours.
On August 12, 2012, I was admitted to Broward General, the ER doctor telling me there was a good chance my twelve years of cancer remission was over. Two years to the day later, Jen and I were stuck in the Atlanta airport until 1 a.m., with a layover turning into a 3+ hour weather delay. We were on our way to MD Anderson in Houston for a consult for adrenal gland removal surgery.
This trip and situation revealed how similar scenarios can have drastically different results. Back then, we worried about the unknown - literally, we had no clue what was going on inside me. I would eventually undergo a week of tests that would reveal multiple growing tumors, leading to four surgeries and two clinical trials for which we had, in hindsight, almost no real knowledge or information. Now fast forward to Tuesday night — Jen and I were a bit anxious, but had a pretty good idea of what the near future presents: Adrenal surgery and more PD-1 until this disease progresses elsewhere, if it does.
The first night of my 2012 hospital stay, the guy in the next bed shuffled past me in his tighty-whities, talking about a MRSA diagnosis (the first sign things were not good). Yet, our 2014 delay found us in the airport bar, where the strangers next to us were less contagious and extremely friendly. By the end of the night, we had made a couple of new friends and even generated some interest from a Houston local for A Prom To Remember.
In each case, the following days would be filled with tests and consults, but the difference in situation is remarkable. In 2012, I was revealing how sick I was getting, while now we are seeing how I am recovering (and planning how to continue that recovery).
Two years ago, I knew something was wrong but had no clue what to do about it. Melanoma was little more than a prior diagnosis I had escaped from with a few scars and long sleeve shirts. Wednesday, we entered a top cancer clinic armed with significant layman's knowledge on multiple options for surgery and potential systemic treatments should PD-1 start to lose its mojo.
This week’s Houston trip was quick, and decidedly split - on one hand, we were less than impressed by their preparation and overall coordination. Jen and I both left the hospital underwhelmed by the day's initial consults, and wondered why a lot of the stuff had not been addressed beforehand, so the doctors could actually have a plan(s) in place to discuss when we got there.
On the other hand, once it got moving, it moved quick - a brain MRI and a PET scan were both added to the schedule, fitting us in late at night on Wednesday and bumping us up today in just enough to make our flight home. Annoyance at the surgeon needing to be switched was tempered by realizing we were getting one of the top surgeons in the entire hospital, which will increase our odds that the adrenelectomy is done laparoscopicly (and recovery time is shaved by 75 percent).
During the registration process, one of the MD Anderson nurses said, "You must be someone special, because Dr. Hwu doesn't take on many new patients." Dr. Hwu (one of two melanoma oncologists with a last name pronounced "who", which has led to multiple Abbott and Costello moments) has a very loosely worded TIL trial at MDA that is part of their "moon shot" campaign. We are lucky that there is a good chance I remain on the PD-1 trial, and there are multiple backup options to consider. The brain MRI and PET scan could reveal really good or really bad news; either way, there are options, which too many people we know have run out of.
The night we left for Houston, a good friend lost her sister to cancer at 42, leaving behind a fiancée and two young boys. She and I had met (and karaoked!!) a year or so before both receiving our diagnoses. Sadly, she heard the words that many others have, ones I am hop-scotching to avoid: "There's nothing else we can do." If I wasn't comparing life before hearing the news of her passing, I certainly am now. What a difference two years can make.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »