Making our time together more than just pictures and memories

Being a patient in recovery has a LOT of small advantages — “silver linings,” I called them in one of my first blog posts. You are afforded significant leeway, and the amount of support offered and given is often way out of proportion to what is really necessary or even deserved.  The optimistic tone that has been one of the mainstays of this blog is a lot easier to maintain when the world around you is doing everything it can to make your life as painless as possible.

Sometimes, though, the kettle boils over – the emotional difficulties of this journey don’t allow every worry to just dissipate with an eventless infusion or even good scan results.  The morbidity of the situation can’t always be brushed aside with optimism or laughed off with gallows humor. For every miracle story of decades-long survival, there are exponentially more sad endings.

Being an active member of a Facebook Melanoma group and reading different melanoma sites, I get a pretty good idea of how people are faring against this disease. You know what, it’s not good.  Bad news comes often – scans show disease progression, brain metastases appear, someone is back in the hospital, etc. It seems like nearly every week, we mourn the loss of one of our own. The down side of a support group is that it is not immune to reality, and sometimes that reality comes from unexpected places. 

I recently had lunch with two long-time friends, catching up on the last year and talking about kids and vacation trips and the like. It was nice; the conversation didn’t center on cancer, as many of mine invariably do (I don’t mind – I mean, I wouldn’t be telling the world about this if I did). One friend talked about how difficult it was for her friend Holly to get the right advice and find the right treatment for her melanoma. I casually asked how she was doing, thinking maybe I could help, and got this response:

“She passed away.”

I was stunned. I don’t know why I was caught flat-footed; I know the dismal median survival rates and life expectancies. For some reason, I just didn’t expect to hear that, something so abruptly different in tone and content from the rest of our conversation. There I was, having lunch with friends on a breezy day in Miami, like everything in my life was fine and I didn’t have a care in the world and less than a year ago, Holly was likely doing the same thing — not yet aware melanoma would take her life in a few months’ time. All of the sudden, there was this reminder that the chances are about 8 in 10 that someone will be saying those exact same words about me within the next three years. 

Adjusting to this reality is an ongoing process, and one that we will likely never complete. Jen and I have had a few up and down moments recently, as I am trying to become more active in daily parenting and family life. Being the know-it-all that I am, there is an occasional overzealous “observation” or “suggestion for improvement” that isn’t warmly received.

She is in an impossible situation; dealing with the emotional and mental difficulties of being a mother and a cancer patient’s wife, while processing her own feelings and emotions. Even though I am a pretty open book, there are few times I willingly admit that I have trouble with this – with battling a disease that is likely to leave me dead before Tommy hits Kindergarten.  Just writing that is tough; unloading it on an overworked mother/wife/law office of one doesn’t seem fair. Then again, being in a funk for a reason I couldn’t explain (as I was just this past weekend) isn’t really fair, either.

When I set goals for myself on New Year’s Day, they were tangible and actionable, which is what good goals should be. Neglected in all of that was emotional consideration for treatment and recovery — or, in a plausible scenario, disease progression. I don’t have a way of dealing with the stress this puts on me or our family. Being a survivor won’t mean much if Jen and I sacrifice our emotional wellbeing just to keep this family intact as long as possible.  I need to understand my struggles in coming to terms with this, so that we can make this time – our time – together more than just pictures and memories.

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