Sunday, August 2, 2015

Doing too much and not enough

I have a big week coming up — scans, infusion, and a meeting with the colorectal surgeon to see what to do about this colostomy. For the first time, I am a little nervous. (OK, maybe not for the first time…) I also had a back MRI thrown in there because, hey, what’s one more test, right? (One more loud, four-hour-long test!) Thankfully it came back negative for any trace of cancerous activity in my back and spine. I’m glad the doctors are being cautious, but lower back pain isn’t exactly a rare occurrence in middle age men with portly little toddlers (and Tommy is a 27 lb. bowling ball of energy who wants to be held quite a bit). I attribute the back pain to more activity, and muscle immobility, over the last year.

Doing too much and not enough

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I have a big week coming up — scans, infusion, and a meeting with the colorectal surgeon to see what to do about this colostomy. For the first time, I am a little nervous. (OK, maybe not for the first time…)  I also had a back MRI thrown in there because, hey, what’s one more test, right?  (One more loud, four-hour-long test!) Thankfully it came back negative for any trace of cancerous activity in my back and spine. I’m glad the doctors are being cautious, but lower back pain isn’t exactly a rare occurrence in middle age men with portly little toddlers (and Tommy is a 27 lb. bowling ball of energy who wants to be held quite a bit).  I attribute the back pain to more activity, and muscle immobility, over the last year.

Mentally, I have felt more up and down the last few weeks. For someone who has focused on staying grounded and levelheaded, I had quite a few fluctuations in emotion the last month or so. There were the “fun” things, like the trip home for Pearl Jam, but also smaller, subtler things that gave me a bit of a boost. 

I went jogging for the first time in a while the other day, a year after my lung surgery.  Three miles, and while they were three SLOW miles, I was determined to finish and NOT stop for a break. It got me pretty pumped; I’m not a runner by any stretch, and seeing how far I came in the last year gave a huge sense of accomplishment. Heck, it’s the first time I ever got emotional during a workout. I got back home and immediately looked up local Tough Mudder and sprint triathalons coming up – and then nearly passed out from the run.  I suppose I have a ways to go before I am ready to get back out there.

There were other things too – a marriage retreat at our church, a day-long seminar for charity boards, meeting friends for the Florida State-Miami game.  I did a headstand at yoga — an “inversion” (sounds cooler, and more difficult that way).  Even just playing with Josie and Tommy, there were a lot of positives, a great collection of memories made and moments seized.

So why have I not felt “good” all the time?  One would think that the continued good news with my treatment, coupled with more activity and some pretty special events, this would be the time to bask in happiness 24/7.  While I am not close to being out of the woods, there are many positives in life right now.  So why, all of the sudden, have the down moments come nearly as much as the up ones?

I suppose part of it is medical – while I am more active than I have been since being diagnosed, it has definitely taken a toll.  The uptick in activity has made my body ache a bit, and certainly left me feeling drained on several occasions.  Jen and I talked about how different life has become, and how limited my participation and energy is.  It has to be frustrating to her, to see me able to do things sometimes but not others and never really know which T.J. is going to show up.

But it’s not just that. I know me, and I know when I get “down” and how it feels. I see how my behavior changes. I get less patient and more irritable; my focus becomes me and not Jen or my children. I am sure there is a clinical diagnosis here somewhere, for something, but more importantly, I feel whatever “it” is. I have adjusted life out of necessity this past year, and selfishly, I want some of that old life back.  Jen does, too — she even said it to me at the retreat session on Saturday. Life has become “T.J. vs. Cancer” for all of us, and seems to be measured in moments, with cancer being the omnipresent backdrop to everything.

I think about my cousin Alison, whom I barely knew (she was 5 when I went off to college) and has passed away at 23.  She battled depression, and reflecting on her death and struggles she had fills me with the desire to be strong for others.  At the same time, it makes looking in the mirror a little more difficult — feeling that life is passing by at a rapid pace and I am a bit paralyzed by my own body’s issues to steer the course I want. Feeling like I am losing the ability to dictate life and what I get out of it weighs on me, kind of makes for a heavy heart.

I also think about my grandmother, who passed away in her early 40s, and something my Uncle said to me — that he would have sacrificed a year or more of doing things with her, if it meant she would have been able to see him grow up. Maybe that is what this boils down to.

Paradoxically, I am doing too much and not enough. Our lives have been scheduled with events and activities, all to create those “moments”, but maybe the focus shouldn’t be on the items on the calendar, but all the time in between. There are sound arguments for those events and the natural high they bring, but it shouldn’t come at the expense of being out of sorts as a husband and a father — and I most definitely am out of sorts a bit right now.

Luckily, I get a reminder that life “is a one-way street” every three weeks, and a tangible measure of success every six weeks. This is a good time to push the reset button and re-start the things that bring happiness into my family’s life, and therefore into my own. The next eight weeks will have plenty of holiday “moment/memory” time, with calendar-filling appointments to complete. I will check back in after the ball drops on 2013 and see how we did making life (and not just life’s special moments) the focus of happiness and energy. 

No reason to save the resolutions for New Year’s when I can start them today.


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

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About this blog
T.J. Sharpe is sharing his fight against Stage 4 Melanoma. A South Jersey native and Bishop Eustace graduate, he currently lives in Fort Lauderdale, FL with his wife Jennifer and children Josie and Tommy. He was Patient #1 in a clinical trial at Moffitt Cancer Center in Tampa as the first person worldwide to use this sequence of treatments to fight melanoma, and is currently in a second clinical trial at Holy Cross Hospital in Fort Lauderdale receiving Merck’s anti-PD-1 drug Lambrolizumab

The Patient #1 blog will update the progress of T.J.'s fight against cancer, and also touch on many cancer-related topics.

Follow T.J. on Twitter and Facebook. Reach T.J. at Patient1@tjsharpe.com.

T.J. Sharpe
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