December 16th, 2019
| Survivor: Liposarcoma
Starting in spring 2018 I was having regular back pain. I chalked it up to being 51, playing sports, working hard, and flying all around the country in uncomfortable airline seats. Lots of my friends had sore backs. Then I started getting constipated in May. It didn’t let up, despite the use of OTC laxatives. I wasn’t feeling right. So I went to my local doctor, he took an X-ray and some blood. “Yes, you’re constipated,” he said. Keep taking the laxatives. Then the following week he called back. “I don’t like what I see in your blood. You’re anemic. I’m sending you for a scan”. At that moment I said to my wife “I have cancer”. She tried to comfort me by saying that I was jumping to conclusions. But I knew it. The scan confirmed a large pelvic mass 17cm. Like a nerf football. Holy crap!!
I’m fortunate to have an excellent general practitioner in NYC. He got the results on Friday before the July 4 weekend, and, amazingly, got me in on Monday to see one of the top colorectal oncologists at Sloan Kettering. After a day of scans and many uncomfortable examinations, he said that I don’t have colon cancer, that it appears to be a localized tumor and that it hadn’t impacted any other organs. Everything else was clear. A bit of relief, but we still needed a biopsy to know what it was for certain.
Two weeks later, the diagnosis, dedifferentiated liposarcoma. A what? I tried to stay off the internet and just place my faith in the team around me. I met with a medical oncologist who said that with certain drugs there was a 30% chance of shrinking it by 25%. Not great odds. Then I met with the surgeon who confidently said, “let’s take it out”. “How is the day after tomorrow for you”? At that point, I realized just how serious this was. If the most experienced liposarcoma surgeon in the country wanted it out immediately, then let’s get it out. I took the two days which happened to be over the weekend to mentally prepare.
I went in for surgery on Monday, July 30, 2018. The whole procedure was 11 hours. The tumor was large, wrapped around my colon (the constipation!) and was up against a part of my spine (the back pain!). Two surgeons took part. The lead surgical oncologist told my wife afterward that it was the toughest resection of a tumor he had ever done. But they believe they got it all. Because it was wrapped around my colon, they needed to sit part of it away. That required an ileostomy. So I came out of surgery with a foot-long scar down my abdomen and a bag for the ileostomy.
I spent 23 days at MSK recovering and finally was discharged in late August. I went home with four tubes sticking out of me. Not fun. But I was home and the long-term prognosis was good. I spent another month plus recovering at home and then started to garner enough strength to get back to my daily life.
Over the following 9 months, I had two scans. The first was clean. Whew. The second showed a small regrowth of the tumor. Only 2.5cm. Uh oh. What did that mean? It’s common for this to reappear, the doctor said. But we have a targeted radiation therapy that can help shrink it. I went and had that therapy. Quite easy, actually. I just sat in a mold they made of my posterior to ensure that I was in the same position each time, then zapped the spot with a high dose of radiation.
The therapy worked, and they shrunk the tumor. The medical team felt the right thing to do was to go back in, remove that now dead piece of tumor and reverse the ileostomy. In mid-August 2019 I had that procedure. The doctors say I’m cancer-free.
I had the ileostomy reversal and I’m trying to get my body back to normal bowel function again. I’ve been told this can take months to heal and get back to a baseline. I hope it’s sooner as I’m in a lot of discomfort now. But I’m confident that if I can survive what the doctor said was his most difficult surgery, I can survive this.
I am so fortunate to have all the things I needed to heal and get better. First and foremost, the most amazing wife you could ever ask for. She is a rock. You make a few really important decisions in life and man; did I get that one right. I have a wonderful extended family that gives me amazing support. I’m also fortunate to have an incredible group of friends that repeatedly checked in on me (and still do) and will do whatever it takes at a moment’s notice. And so much more that would take lines and lines to recount.
I know I’m fortunate. I’m gonna beat this. At the end, it will be Me - 1. Cancer - 0.
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