The price you pay for success

Dose #4 of PD-1 was last Thursday, and sometimes things don’t always go as planned. Sometimes, you take the good doses for granted as a sure sign of “getting better”.  And sometimes, a taste of normal literally reminds you life is different when battling billions of your own cells that want to kill you.

The dose itself, like the three before it, went fine.  I had even prepped ahead of time with a bit of immunity-boosting soup – garlic and onions and some veggies.  Not exactly Campbell’s or Smitty’s Clam Bar chowder in culinary appeal, but, in theory, it gets the immune system fired up.  Even if it’s only a theory, and, in reality, does jack to fight melanoma, there is a bit of an emotional lift that comes with actively doing something you feel contributes to the fight.

So perhaps it wasn’t the best idea to have a little “celebration” lunch of all-you-can-eat snow crabs immediately following the dose.  While crabs are fine, and the drawn butter use was very limited, that whole “balance” thing wasn’t much of a consideration once a pile of steamed Alaskan crabs hit the middle of the table. Fast forward to midnight, and some serious stomach cramping that made sleep fitful, and I remembered taking a break from this battle sometimes comes with consequences.

The positive thing is the price paid for combining a crustacean temptation with experimental pharmaceuticals was only stomach pain and a couple days of fatigue.  It served as a good reminder this isn’t just taking some medicine and waiting for the symptoms to recede.  It has been a little bit easier to relax – our minds, our diet, our lives – seeing the neck tumors shrink and shrink.  It has emboldened me to push myself a bit more physically, to start building muscle back up a bit after nearly a year of my body atrophying.  Feeling like garbage for 48 hours after dose #4 was a bit of a reality check.

So what, if anything, changes?  Certainly the post-dose #5 lunch will be a little more palatable to a jumpy immune system.  I’m also drinking a LOT of water; dehydration is a common problem for many, but for those of us taking immunotherapy drugs AND with a colostomy, it’s even more vital to keep the body flushing toxins out as they are picked off by the PD-1 snipers.  Otherwise, though, the diet – while still restricted – is continuing to loosen a little bit here and there.  Right now, the emphasis is on getting immune-boosting meals on our plates and gaining a little weight, with a bit less stress put on “avoid this” and “don’t have that”.   

While being conscious of not overdoing it on a daily basis, I continue to push myself a bit – more active with the kids here, doing more house stuff there.  Plus, the yoga sessions continue, with a few rounds of golf thrown in as well.   Golfing in long sleeves and a sweat-inducing wide brimmed hat in the Florida summer humidity is akin to the hot yoga classes; I repeatedly bend and twist at awkward angles, aspire to get on par with those much better than me, and feel good enough afterwards to forget how difficult the session/round really was.

Mentally, it also serves to keep myself in check.  Being a pretty optimistic person, when you give me a couple of signs something is working, it tends to stroke the self-confidence levels.  As quite a few people reading this have told me over the years, cockiness isn’t my most endearing trait (they usually don’t care for the “It ain’t bragging if you can do it” Dizzy Dean response, either).  A little reminder from my body that this fight is long from finished helps keep my focus clear.

In twelve days, we find out just how well (or poorly) these first three months of PD-1 have gone.  Regardless of what the scans show, I will better handle the ups or downs after this past dose.  If the news isn’t what we hope, I know my body will still fight.  And if it is, I’ll remember there is still a long way to go before “winning” turns into “won”.  Then, we’ll celebrate a little bit – after all, it ain’t bragging if you can do it.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »