If you’ve not read my old post with details I’ll summarize. I’ve had melanoma for 9 years, stage 1 boosted to stage 3 practically immediately and was excised along with my right ear. Entered a trial treatment which has since been approved, Ipilimumab. For a few years after I continued my foolish behavior like nothing happened. 2018, my melanoma had evolved to stage 4 metastatic and we had no idea. In august of that year a tumor in my brain decided to explode...luckily I live close to Johns Hopkins, and my life was saved. Months later it ran down my spine, legs, lungs etc. Wheelchair after a cane in weeks. I had a month or two. Tafinlar and Mekinist cleared it just as fast as it hit me. Clean scan. The next will be my experience since then, for some reason I felt the need to post something today.
My name is Ryan, I’ve had melanoma since I was 21. I am 30, and I’ve now had 10 surgeries. After the post above, I had a few months to recover and enjoyed that time as best as I could. Shortly after my recovery, cancer infested my stomach area, and a large resident in my lung. Since taf/mek stopped functioning we tried a duo of immunotherapy, and my body denied it. Keytruda was tried once (one infusion) before it took over my body before, and oncology assumed it didn’t work, so we went straight to chemotherapy. The only thing chemotherapy did was take my head hair and my priceless beard, not a single thing more. At that time, the idea was that I was a goner. My lovely girlfriend looks things up, studies oncology and my test results like a professor....and she demanded keytruda. Her nickname is Keytruda now, because it saved me again. All things shrunk or disappeared in 3 months, or so said the radiologist. My health....improved in a way. I was able to finally reduce and eventually remove the dexamethasone that wrecked my skin and added 60 pounds. Blood clot popped up somewhere in that time period and I had to inject medicine into my thigh every night but I’d trade that any day, and people with diabetes have it much worse. For almost 8 months I had intense stomach pain, even on narcotic pain medicine for around a year. We assumed it was a standard opioid effect, constipation. A clean scan shows that it’s not cancer, does it not? Today is the last day of August 2020. Early this month I could no longer take the pain (or eat), even after I quintupled the amount of pain medication (don’t do that) as tears fell, nothing withdrew so I went to the ER. They didn’t realize the seriousness of ME complaining of pain and ignored me, so I banged my head against the wall to relocate the pain. Shortly after, they moved me to the oncology unit, my timeshare. After a lovely brain swab for COVID-19 and 5 attempts to shove a tube down my nose into my stomach, I had a few new scans with a large team of doctors reading them. There were 3 tumors in my small intestines, one completely blocking and two others stacked on each other almost blocking as well. Oh, and a large artery was a full blood clot. I probably shouldn’t have denied taking blood clot medication, sometimes lessons are hard but that’s another story.
Well that explains why a 30 year old man with no other medical issues needed consistent blood transfusions and iron infusions huh? It also shows that the doctor who put a camera through my mouth and the opposite hole is blind but that’s not why I’m here. The general surgeon basically said there’s nothing he can do about it...hospice. My oncologist and my palliative care doctor are some of the best people in my life. Oncology denied my death an innumerable amount of times, and did so again. The doctor found a surgeon, and interviewed him (doesn’t that sound funny?) but he accepted and she accepted. A man with low red blood cells, low iron, thinned blood, cancer, a major artery blood clot, pain medicine and no food on their chart is rarely able to have surgery, but he came in the room and calmly said I will not go to hospice. He will either remove all three, or bypass them so I have more time. Shortly after I accepted the surgery, he fit me into a busy day and 40 minutes later sowed shut a cancer free body with clean margins and clean lymph nodes. ~14 inches short of small intestines but I live comfortably today, less than a month later. Keytruda began again today.
A few positive things about that 9 day hospital stay:
1. I shed every single dexamethasone pound comfortably
2. My girlfriend was able to be by my side each day, even though others were prohibited because of COVID. Having a nurse clean you is painful mentally.
3. I am still here, better than I have been in years even though there is an incision down my stomach (they saved my bellybutton 😎) that feels like it’s on fire and I can’t do certain things.
I’m not sure how many times I’ll walk by deaths door but I demand purpose for such luck and love. I’ve written a letter to the governor about people with cancer...but that’s just a letter and may run by his eyes. I hope that somebody can read this and reach out. If any of the doctors interest you, I will give you their names. The doctor who did my stomach surgery is about the only solution to pancreatic cancer. I hope you all are doing well, feel free to ask any questions, even if they aren’t related to cancer or pain medicine.
-Ryan
