Patient #1 anticipates results from his first PD-1 scans

“The waiting is the hardest part, every day you get one more yard.
You take it on faith, you take it to the heart, the waiting is the hardest part”

Tom Petty and my nephew Tyler both sing about the difficulties of delayed gratification; Petty in front of 20,000 fans, Tyler in front of his little sister and a bunch of Thomas the Tank Engine trains.  The anticipation of what is to come is stressful; anyone who has ever taken the SAT’s or a driver’s test can tell you that sometimes, you just NEED to know NOW how you did.  Add in “your life depends on these results”, and the delay from completion to notification makes time crawl.

In late February, we had that feeling waiting to get my scan results from Moffitt, after nearly six months had elapsed from initial diagnosis to completion of experimental treatment.  When the tests results showed progression (oncology-speak for “it’s getting worse”), a bit of deflation and disappointment ensued.  On Friday, I will have my first scans since we started PD-1, and the internal caterpillars are turning into butterflies in droves.

The nervous anticipation this time has been tempered somewhat; as I shared in the last blog, I was “lucky” enough to develop tumors in the lymph nodes on both sides of my neck.   They felt ominous in March (when one grew big enough to be seen clearly), but actually became a gauge as to PD-1’s effectiveness.  As those tumors shrank over the last two months, our confidence grew that this course of action was working.  Major caveat: there is no guarantee the larger tumors are reacting as well, so there is still plenty of uncertainty going into Friday’s scans.  Waiting for the results – which might not come until Monday afternoon – is not going to make this a “normal” weekend.   Then again, “normal” for us is quite different from most people,

The best thing about those little neck tumors going down is that our attitudes have changed.  Jen and I (and the rest of our family and friends) have always had an optimistic outlook, but there was always a bit of a cloud hanging over us.  The cloud certainly isn’t gone, but a positive sign has removed some of the worry and replaced it with renewed optimism.  Being in a better mental place has allowed me to focus on making my body healthy, and spending quality time with Jen and the kids.  It is helping me get back to living again, instead of just trying to stay alive.

Between feedback I get from this blog, the Facebook page, and a couple of melanoma groups, one consistent thing is anticipation puts stress on nearly everyone.  It is difficult for many, and downright impossible for some, to leave their cancer at the hospital door.  Knowing they cannot do anything outside the walls of their treatment (and lifestyle/heath changes) makes living in the present just as daunting a challenge as overcoming the cancer odds.  I end up reading about the melanoma (and other cancer) battles of many and thinking “They are going to beat this thing, too” for those who project a strong and positive attitude; conversely, and sadly, there are too many I read and think “This person isn’t going to make it” if they continue to let cancer consume them mentally AND physically.

So the nerves will be there tomorrow, and surely will continue until we get the results.  In the meantime, there are life moments to be enjoyed.  We just spent a couple of nights in Disney with a “pair plus one” set of miracle triplets approaching two years old; they were two months early and all weighed just slightly more than your average bottle of wine.  Today they are healthy, independent-minded toddlers and reminders that wishes do come true.  Being a part of the Nichols family trip gave us Sharpe’s some much-needed and appreciated life memories (it also gave some practice in waiting… ugh, the lines were ridiculous).  We’ll find out shortly how promising the outlook is for many more trips to the Magic Kingdom.  Meanwhile, the hardest part won’t be the waiting; it will be making sure that we aren’t waiting around while life passes by.

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