Wednesday, July 29, 2015

Latest procedure on the books means no rest for Patient #1

Lest we thought just waiting for scans were the only March activity, melanoma or something related to this treatment decided to add another mystery obstacle – on Josie’s third birthday, of course. Back in December at the end of our quick Disney trip, I had some funky white-ish growth on my right tonsil. It was pretty nasty looking; I’ll save you details, but a very foreign-looking, superball-sized mass appeared, nearly overnight, inside the back of my mouth. After treating with Nystatin for a day, the thing fell off – unfortunately, right down my throat, so no biopsy was possible. Several doctors and dental professionals concluded it was likely thrush, as I was on antibiotics at the time and neglected my probiotic pills and yogurt just before and during Disney.

Latest procedure on the books means no rest for Patient #1

0 comments

Lest we thought just waiting for scans were the only March activity, melanoma or something related to this treatment decided to add another mystery obstacle – on Josie’s third birthday, of course.  Back in December at the end of our quick Disney trip, I had some funky white-ish growth on my right tonsil.  It was pretty nasty looking; I’ll save you details, but a very foreign-looking, superball-sized mass appeared, nearly overnight, inside the back of my mouth.  After treating with Nystatin for a day, the thing fell off – unfortunately, right down my throat, so no biopsy was possible. Several doctors and dental professionals concluded it was likely thrush, as I was on antibiotics at the time and neglected my probiotic pills and yogurt just before and during Disney.

Well, guess what – it wasn’t thrush.  It came back, starting the weekend before these final scans (10 days ago) and growing bigger.  By the time we left Tampa, it was necessary for the mass, and the entire tonsil, to be removed.  Back in Broward County on Wednesday, I had my right tonsil removed, along with our unidentified growth.

A full biopsy will be done on the mass, and a piece was saved should Moffitt want to do their own research.  The two most likely scenarios, now that normal viral and bacterial causes have been ruled out, are: a tumor in my cervical lymph nodes is causing something to get pushed out via the tonsil, or the Yervoy is causing a swelling reaction.  I am certainly hoping for the latter, but concerned it is the former, since the first occurrence was six weeks after a Yervoy dose.  Actually, I am really hoping guys in dark suites come knocking on my door, whisk me away to some secret government medical facility, and study how alien DNA got into my throat, but short of that, an inflamed tonsil will do.  If you don’t hear from me for a week or so though, you know what REALLY happened…

Adult tonsillectomies are a bit more difficult than the “little kids and ice cream” stories I remember hearing about when I was a child, although most of my tonsil knowledge came from the Bill Cosby “Wonderfulness” album.  The recovery is a bit longer and more painful, but after the last six months of fun, this outpatient procedure was simple.  The recovery hopefully follows a similar course; so far, so good. 

It included a pint and a half of sorbet, several bowls of pastina with chicken soup/broth, and a tiny slice of birthday cake for Wednesday, with generous amounts of water and green tea mixed in. Other than fatigue in the afternoon, which has been routine, and not being able to talk loud or long, I feel really good.  A couple of days’ rest should get me back to somewhat “normal” levels.

Food Side Note: Since we were unable to get to Tony Luke’s during our Philly trip, I was able to feed my jones, so to speak, with a Roast Pork Italian at the Phils spring training game Sunday.  It wasn’t quite as good as the original, but came close enough that I might make another game just to get my Tony Luke’s fix, now that this thing is out.

Of course, being back in the hospital (sigh) was not fun; having another IV was almost routine, in a “pay the monthly bills”-type weary way; and getting knocked out, even for an hour, throws your body off.  Jen counted – this makes four surgeries in August, October, November, and March, with the chemo/TIL/IL2 thrown in during January for good measure (and the crux of all this).  Someone should start an online pool to see where they are going to slice me open next – hint to my degenerate gambler friends, you know who you are (if we have texted point spreads, watched “Rounders”, played Hold ‘Em into early AM hours, or sat at a swim-up blackjack table together, yes, I am talking to you).

Of course, I am falling asleep typing this – shades of late night term papers or requirements documents that unexpectedly had a several-line string of aaaaaaaa’s where my next thought was going – so maybe I had better get some rest to heal and avoid Surgery 5. Getting my body the recovery time it needs has been a constant back and forth balancing act, even with all the help we get.  I see work piling up around the house, our to-do list getting longer (thankfully, a college buddy volunteered to clean all our track lights), and Jen running around like crazy doing Mommy/Housewife things, and I (usually) feel the need to pitch in.  We also have always been pretty active, “on the go” people and downshifting from that mindset is tough, especially when I feel relatively healthy and eager to resume life at home.

Even when I do consciously keep myself to limited duty, having a two year old – whoops, make that having a three year old – and an infant ensure that shattered relaxation is only one child’s need away.  Jen is going to need at least a month of downtime after all of this to properly catch up on her sleep.  Let’s hope Josie got a step closer to a healthy Daddy (and rested Mommy) for her birthday this year, starting with one last minor surgery and ending with a major recovery.

0 comments
We encourage respectful comments but reserve the right to delete anything that doesn't contribute to an engaging dialogue.
Help us moderate this thread by flagging comments that violate our guidelines.

Comment policy:

Philly.com comments are intended to be civil, friendly conversations. Please treat other participants with respect and in a way that you would want to be treated. You are responsible for what you say. And please, stay on topic. If you see an objectionable post, please report it to us using the "Report Abuse" option.

Please note that comments are monitored by Philly.com staff. We reserve the right at all times to remove any information or materials that are unlawful, threatening, abusive, libelous, defamatory, obscene, vulgar, pornographic, profane, indecent or otherwise objectionable. Personal attacks, especially on other participants, are not permitted. We reserve the right to permanently block any user who violates these terms and conditions.

Additionally comments that are long, have multiple paragraph breaks, include code, or include hyperlinks may not be posted.

Read 0 comments
 
comments powered by Disqus
About this blog
T.J. Sharpe is sharing his fight against Stage 4 Melanoma. A South Jersey native and Bishop Eustace graduate, he currently lives in Fort Lauderdale, FL with his wife Jennifer and children Josie and Tommy. He was Patient #1 in a clinical trial at Moffitt Cancer Center in Tampa as the first person worldwide to use this sequence of treatments to fight melanoma, and is currently in a second clinical trial at Holy Cross Hospital in Fort Lauderdale receiving Merck’s anti-PD-1 drug Lambrolizumab

The Patient #1 blog will update the progress of T.J.'s fight against cancer, and also touch on many cancer-related topics.

Follow T.J. on Twitter and Facebook. Reach T.J. at Patient1@tjsharpe.com.

T.J. Sharpe
Latest Health Videos
Also on Philly.com:
letter icon Newsletter