Getting to live more: Not just the good stuff, but all of it

So the good thing about tumor regression is that, well, I get to stay alive awhile longer.  The silver lining?  That means I have to live – and life isn’t always the fun Keys trips and family times I tend to share.  Sometimes, that means being a Dad, and a husband – roles I am plenty qualified to handle (well…), but can certainly present a challenge. Like Friday morning. 

I’m typing this from the passenger seat of Jen’s SUV, while Tommy snoozes in his car seat.  Before you call DYFS, it’s a temperate 71 degrees an hour before sunrise, and the windows are cracked.  Faced with the decision of bringing this nocturnal beast back inside and risk waking him, or letting him (and, hopefully, Jen and Josie) continue to sleep, I grabbed my laptop, a Lara Bar, and some water, and have camped out until he begins to stir.

After failing to take a nap for the first time ever, Tommy crashed by 7pm last night – which meant he was awake before last call. And he’s been awake ever since.  Jen tried all the normal tricks, but between being awake, recovering from being sick, and in the final phases of weaning off nursing, he wasn’t heading back to bed for her. One drawback of our parenting style of bringing the kids places and letting them adjust is that a “sleep schedule” is something we never really implemented. In the Sharpe house, bedtimes are guidelines based on the day’s progression and the evening’s activities. That means some nights (and subsequent following mornings) are earlier than others; it also means we get to deal with this on occasion.

So Daddy got the call from the bullpen. My sleep has been a bit off too – the 14th PD-1 dose was Wednesday, and a four-hour nap starting at 5 p.m. that afternoon really messed up my waking hours.  But, this is when duty calls. I cannot solely focus on “recovery” if it means sacrificing Jen’s health, and sanity. She has pulled off solo duty on compromised sleep more times than I can count, so it’s time for me to pitch in too. Even if it means driving this kid around in the early morning hours. Or blogging from my driveway while he sleeps far away from the girls in the house.

Parenting styles are all different; some friends have a strict schedule and rarely deviate from that. We chose with Josie to be much more relaxed, and enjoyed being able to take her places and have her sleep anywhere. It made for some long nights, but a few years ago, it was two healthy parents versus a toddler — our odds were at least decent. 

When Tommy came along, we spoke about being a little more rigid with his schedule, especially juggling both kids. Four weeks into being the parents of two, all that changed with my diagnosis. I lost track of how many people took care of him in the subsequent months, but needless to say, the multiple places and faces didn’t give him any better of a sleep schedule than his sister had. And now it’s time to pay the piper, so to speak.

These, however, are great problems to have. If you would have told me a year ago, while I was getting ready for my TIL and IL-2 treatments, that one of the biggest issues I would have in early 2014 would be getting Tommy to bed, I think I would have been pretty happy about that. So this negative silver lining is just something we take in stride as a normal repercussion of the healing process. I get to live more, not just the good stuff, but all of it. 

So that means some late nights, and early mornings, with a feisty little 18-month-old. As a patient, sure, it would be nice to pawn off these tasks to someone else and get a full night’s rest. Being more than just a patient, though, means shouldering the responsibilities of Daddy and Hubby when and where I can. So sleep tight, kiddo — Daddy’s here.

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

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