Wednesday, July 30, 2014
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The rest of my life as a metastatic melanoma patient

Where does this leave us? My doctor was fairly upfront with us - I am likely going to live the rest of my life as a metastatic melanoma patient. While I harbor aspirations of one day getting the No Evidence of Disease label, there's still nearly 12cm of measurable tumor in me.

The rest of my life as a metastatic melanoma patient

After unsuccessfully lobbying for a change in scans from Friday to Thursday, we once again had a weekend to await results.  The delay seemed to bother everyone but me; I was a little more concerned about figuring out how to use a lob wedge on Friday afternoon than pestering the Holy Cross staff for results.  It wouldn’t have done much good anyways; the radiologist who reads the scans was away for his daughter’s wedding, so it was going to have to wait until Monday no matter how many calls or emails I sent.  You would think the bride would be a little more thoughtful of us cancer patients on her big day…

The scans show stable disease; it shrank another 8% the last six weeks, so I am continuing to respond.  Since I am now getting scans every six weeks, there will be less of the drastic change from scan to scan, like there was between the baseline first scan and scan two (a 46% drop).  This scan was almost identical to the drop between scans two and three (both were rounded to an 8.6% decrease), so from weeks 13-26 in the study, I had an overall decrease of 17%. 

Where does this leave us?  My doctor was fairly upfront with us – I am likely going to live the rest of my life as a metastatic melanoma patient.  While I harbor aspirations of one day getting the "No Evidence of Disease" label, there’s still nearly 12cm of measurable tumor in me. So there is a balance between extremely positive thinking and medical reality that we are learning to live with. 

When you get thrown into the medical world, there is a certain matter-of-fact bluntness that comes with a terminal diagnosis. I appreciate their being honest about my condition and its treatment — that’s what I have wanted throughout this ordeal.  I remember watching my grandparents in their final weeks and how doctors sometimes sugar-coated things for their mental well-being, and thinking, “I hope that never happens to me.” We have gotten an honest prognosis all along, from the first doctor telling Jen, “I’d be surprised if he is here in two years” to being offered options at Moffitt that would give me “many more months.”

I know I am mentally strong enough to handle bad news, so I can sift through the grounded assessment that I will “always have metastatic melanoma” and focus on the positives of life right now. I have felt exceedingly well the last month or so, even with shingles side effects lingering (mainly light sensitivity and irritation to the skin area affected). Physically I am getting stronger, even taking Josie out on a kayak and stand up paddle-boarding on Tybee Island last weekend. Fatigue has lessened, although Tommy is making that a challenge with late-night I’m-wide-awake!! sessions. Overall, I have been able to simultaneously take more on and feel better while doing so.

So when the doctor tells me I am “stable” and that I will “always have metastatic melanoma,” I process the assessment objectively, then look at it through the eyes of someone who is determined to put “cancer patient” on the list of things that I once WAS — even if I don’t exactly know when or how that day will come. Like many things in life, it will likely dawn on me sometime after the fact, that a transition was made while I was busy with the daily battle ridding myself of these tumors.

Right now, I am still a patient, and will remain so while these things continue to shrink. I’m a patient – a patient with my ninth infusion coming up a day after my fourth straight positive scan. Could life be better? Sure. Am I overwhelmingly happy with life right now? You had better believe it. One year is already down, and I am doing everything I can to make sure Year 2 and “many more months” are just milestones along a much longer road.


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

T.J. Sharpe
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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