Surgery is done, scans are complete, and infusion on schedule for Thursday afternoon. It’s time to digest exactly what happened the last two weeks, and make sense of what this means for the future.
The day before surgery, the entire world flipped, this time in a good way. A PET scan from the first visit revealed the adrenal tumor was lighting up – but that nothing else was. “Lighting up” is bad, and conversely, little or no light up is very, VERY good; it indicates the cancer cells didn’t register metabolic activity. This was shockingly great news. Like, “Holy ***, do you mean this stuff could be gone?” It was so good, and so surprising, that when I got initial word of it just before we left, I was hesitant to share with anyone.
As a quick summary, CT scans (which are the standard of care, and what I have been getting on the study) reveal “What does this look like?” and are good indicators of size and location. Positron Emission Tomography, or PET scans, use nuclear medicine to more accurately address the question “How is something working?”, or in my case, “What is still active/alive?” Tumor cells and/or scar tissue can remain in the body for years and remain on CT scans as “masses”, so a PET scan is valuable in determine what those cell masses are actually doing, if anything.
“FDG-avid” is the radiologist term for “those cancer cells are alive, well, and sucking up this radioactive glucose (technically, fluorodeoxyglucose, thus, FDG) like it’s their job”. Something that is FDG-avid is almost certainly cancerous, especially in us guys with a recent history of melanoma. The radioactive molecules in the injection are picked up by live tumors; if you ever hear someone say “cancer feeds on sugar”, the FDG in PET scans are one of the primary examples cited (although often incorrectly). Technically, the PET scan tracks the uptake of sugar through a radioactive tracer (the FDG); after letting the injection coarse through your body for an hour, the scan measures which spots absorb unusually high levels of the radioactive glucose. Like Biggie said (sort of), mo’ activity, mo’ problems.
We asked about a PET scan earlier this year (and a brain MRI, which was also done and came back negative – insert joke here) but it isn’t on the trial protocol. It’s also expensive – double or triple the cost of a CT – and has a higher exposure to radiation. Last week, though, it gave a much better picture of what was actually happening in me. I understand the need to curtail costs and avoid unnecessary testing, but in this case, a PET scan was the more accurate barometer of what the remaining masses were. Getting the PET scan results were the perfect companion to an optimistic surgical outlook (and, eventually, procedure). It cannot tell us everything is gone, but indicated we are as good as we can be at the very moment.
This is awesome, awesome news – I can’t begin to tell you how ecstatic we are. There are also very, very big caveats; “Is this response is going to last?” being the biggest one. The existing masses don’t show activity, but that doesn’t mean cancer is gone, either. One of the down sides is that I’ll live my life with melanoma always dancing in the shadows, wondering if or when it will jump out and rear its ugly head. It’s not the perfect scenario, but compared to the alternatives, this is pretty much the top of the mountain.
Think about it – right now, the biggest negative moving forward is not knowing when this will recur/progress, if at all. There have been about 18,000 melanoma patients since my diagnosis who have fought just as hard, but lost their battle. There are thousands and thousands more who will never get this far – more like hundreds of thousands if you expand to all types of cancer. To wake up a few days past the two year mark of my first hospitalization with no detectable live cancer is surreal.
We got back to Florida and it was the perfect homecoming. Mom and Dad were down from Jersey all week to watch the kids, and had decorated the house for Jen’s birthday and a triumphant return to our families. Both sets of parents and Jen’s brother came over for a birthday dinner/family celebration. Josie gave me little star stickers to put on my shirt, like she gets in school for doing a good job. Even being a little groggy with some residual stomach pain, it was a special moment. I was home, I was with the core group of the people I loved most (albeit missing a few), and the joy and happiness we strived (and often struggled) to maintain the last two years came effortlessly and naturally.
Since the grandparents were staying in Josie’s room, she slept with us the last few nights. On Monday night, she rolled over and opened her eyes, and cuddled in with me a bit, saying, “Daddy, I am glad you are home.” I gave her a kiss on the forehead and told her I was happy to be back, and that God had listened to her prayers to make Daddy’s boo-boo’s all better. She sighed, smiled, and closed her eyes. Just as I felt her fade, I heard a soft mutter, almost like she was talking in her sleep: “I’m glad God listened to me. I love you, Daddy.”
I love you too, little girl. I am glad He listened to you, and the many many others who’ve been praying, too.
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »