Two contradictory things I have constantly heard since this odyssey began were that I need rest, and I need to stay active to build my body back up. Taking it easy and pushing myself a bit. Sounds like a fun moving target to hit, eh? “Do enough to stimulate healing, but don’t do too much that it inhibits recovery.” Piece of cake, all I need to do is know exactly how much is enough and then get as close to that as possible, without overdoing it.
As you can probably guess, hitting that sweet spot is difficult enough in a vacuum, much less in my reality. After dose #5 (the day before July 4th) and through dose #6 (this past Thursday), the activity level rose quite a bit. We had some of celebration moments that I wrote about previously. We did a trip back to Jersey and spent a week at the Shore, bookended by visits with family and friends. We celebrated Tommy turning one year old in New Jersey (twice) and Florida (once). I even pushed a bit and asked the doctor if it was OK to scuba dive… four hours after I got off my buddy Fred’s boat, 23 lobsters in tow between us. (There is a two day mini-season down here before lobster season officially opens; think Memorial Day levels of activity, except under water). The “ask forgiveness, not permission” thing applies to cancer treatments, apparently.
So for most people, this would be a ridiculous three-week stretch; for the Sharpes, it’s just called summer. Or, at least, that’s what it used to be called. I have pushed things more since the 46 percent shrinkage scans came back, and probably could have used a reminder that I need to be a little less liberal with the “stimulate healing” thing. Unfortunately, I got one this past weekend.
You know those commercials about shingles you see on TV and probably don’t pay much attention to? Yea, they are actually quite informative, once you do indeed have a flare up of the varicella zoster virus, as I found out the hard way. A slight tingling in my forehead Saturday turned into a full-on rash by Monday morning. A couple of trips to the doctors’ offices confirmed that it was, indeed, shingles. A weakened immune system is the primary cause of shingles, for those of us who have had chicken pox before. So, while it is impossible to pinpoint an exact cause, I am pretty certain that higher activity levels coupled with a drug targeting the immune system led to case of a very annoying virus becoming active in my body.
If you are keeping score at home, this would be the third dose with some kind of reaction, so we’re batting around .500. It unfortunately means that the next few days will be spent a lot more inert than I would like, seeing out of one eye. It also reminds me that I don’t always have a good grasp on what is too much – those of you who’ve been out with me on a Saturday night know all too well my “off” button doesn’t work real well sometimes. So to hit that moving target of being active without overdoing it is like bringing a kid into a candy store, letting them sample a few items, and then giving them a gallon bag and saying, “Just get a little.”
The silver lining to this – well, other than catching up on some emails and a few “Burn Notice” episodes – is that my body is still giving me indications of when I cross the threshold of too much. Yes, I feel lousy right now, and the right side of my head has been throbbing for the last two days. This might be nothing at all, or hell, it could be a bad sign. I choose to view it as a reaction my body is having to the stress it’s been put under for the last year. Shingles popping up isn’t a bad thing – it just means the immune system is a little preoccupied with a more severe problem right now. So I will deal with an uncomfortable rash and a bit of a headache. It’s the byproduct of activity, stress, and, hopefully, my T-cells being diverted towards beating a bigger problem.
Now we concentrate a little healing on this side effect so that the bigger part of getting better can continue uninterrupted. Tomorrow is another day, and although those cancer cells seem to have won a round here, it is a small price to pay for a greater victory. I got to spend time with my family and friends and wife and kids, creating some special memories along the way. A couple of days resting is the toll for trying to hit the sweet spot perfectly. I suppose it’s time for a little forgiveness for the immune system. After all, I know those days were worth a small setback.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »