Patient #1: Over the hump but not out of the woods

The most difficult stretch of my treatment is officially in the rearview mirror.  I was discharged Monday morning from Moffitt, almost a week to the hour after checking in.  The recovery indicators shot up between Saturday morning and Sunday, so I just needed to remain off oxygen all Sunday and I was good to go Monday morning.

That the TIL + IL2 took only a week to go from infusion, through seven doses, and then get fully recovered is something that makes me proud.  Originally, my goal had been to break records for the number of IL2 doses received; now, I am glad we halted them at seven before any markers got into the “red zone.”  Sorry for any misconception at the end of the last post – both the doctors and I were thrilled to get seven doses in and remain fairly healthy.  Stopping then was absolutely the right decision; there is no proof seven doses of IL2 is better than six or eight, when used as a TIL supplement.  So, getting in a good number of doses, without triggering any cascading side effects and medicines, was very positive for my treatment and for my body in general – which has taken a beating the last few months and, frankly, could use a bit of good fortune.

Still, I’m not out of the woods yet, though. Chemo and IL2 both have delayed side effects that can kick in over the coming weeks. Plus, two doses of Yervoy still remain, and no one is sure what the cumulative toxic effects are of two Yervoy doses, followed by TIL, followed by IL2, followed by two more Yervoy doses.  Oh yea – throw two surgeries in there too. This sounds like the lineup of shots from my 21st birthday, not a cancer treatment plan.  So, the next couple of months will be rest, recovery, and lots of praying that these t-cells do their thing. A preliminary scan is scheduled for the end of February, but we won’t know for sure until early April how well this worked.

As difficult as I thought the chemo/TIL/IL2 part of this would be, it turned out way better than anyone thought.  Yes, it was difficult, but the horror stories I heard from others never materialized; if you told me I had to go through another two week stretch to get rid of cancer, I’d sign up for TWO of them, just to be sure.

Yet, those two weeks were also framed in perspective.

 I learned the day before chemo started that my brother in law (technically, my brother’s brother in law, but as anyone else with South Philly Italian roots knows, “family” extends to every distant relative, blood-related or not) had been shot and was in critical condition.  Over the course of those two weeks, as I dealt with some fatigue and shakes and side effects, David ultimately lost his battle and passed away – not before helping others by donating organs, though. My “two weeks of hell” was suddenly framed, much more accurately, as “two weeks of feeling lousy.” Losing a child or sibling is truly hell; I have watched families go through it, and know that is real pain and suffering. If Tracey and her parents could be strong for those two weeks as their brother/son passed and was laid to rest, I sure as hell could get through a few doses of drugs that could save my life, a chance David never had.

The entire Compton family has been so very supportive of me during the last few months, and now I have one more incentive to keep me strong – when my wife and I asked how we could help, their only response was “get better.”  So, that is what I am going to do, for many reasons, but this one for sure.  After all – they are family.  RIP David, I will make sure your nephew and niece/goddaughter have Uncle T.J. here to share the moments we both should be a part of.  You are loved and missed.