Coming SoonPosted: February 6, 2019 Filed under: cancer, Emotions, Health | Tags: gratitude, leiomyosarcoma, LMS, ned, oncologist, pet scan 6 Comments
Just a brief update again, I swear I’ll be back in the game tomorrow.
I saw my new new oncologist today. I do not need any radiation or chemotherapy. Well, he was obligated to offer chemo, but the standard for LMS would involve a lot of health risks and at least 12 days in the hospital for about a 1% decrease in my risk of recurrence. I declined.
Leiomyosarcoma is a plain old bad luck cancer. They don’t even know of any risk factors, it just happens. It’s practically unheard of for LMS to initially present in the lungs anyway, but mine was caught at a fraction of the size that they’re usually found.
If I didn’t get CT scans for kidney stones so often, it could have been years before I showed symptoms and by then, my prognosis would have been grim at best. I never thought I would be grateful for kidney stones, but they have literally saved my life.
LMS has a 30-50% recurrence rate, so I will be getting PET scans for a long time, if not the rest of my life, but that is a small price to pay. It’s a good day today.
The First Follow UpPosted: January 25, 2019 Filed under: cancer, Health | Tags: cancer, followup, healing, leiomyosarcoma, surgery, thoracotomy 11 Comments
Today I went back to the surgeon for my follow up visit. I’ve been improving daily, but every time I have an outing, like to my primary care doctor last Friday, or lunch with Ian and his dad Wednesday, I’ve been paying for it with excessive pain later that day and most of the next.
Then there was my first post-op sneeze on Monday morning: agony. I’ve stifled them since, without fail. But as we all know, nothing feels like a good sneeze, and I’m longing for the day that I’m brave enough to try again.
We brought a walker because while I was confident I could make it there, I didn’t know how long it would take and how tired I’d be by the time we were done. I almost feel like my old self with the walker; it supports my right arm enough that it takes two or three times the distance for my incision to start hurting badly.
It ended up taking only an hour, but I’m still glad we brought it.
After I was all checked in and vitals taken and history updated, the nurse griped at me for using the walker while taking us to an exam room. When she handed me a gown and told me to put it on open to the front, Ian realized that she thought I’d had the easy surgery, thoracoscopic, with several small incisions and a couple weeks’ recovery time. I’m doing well enough to fool a surgery clinic nurse!
I saw both residents and the surgeon who operated on me. They were all thrilled with my progress. A medical student removed the suture from one of my chest tube wounds and the resident who pulled them removed the other, then he pulled the tape that’s been covering the dermabond on my surgical incision. I should have asked to see that to really see how long it is; I’ll eventually grab a measuring tape and ask Ian to measure. The worst part was him picking off the sticky residue; it was worse than the suture removal.
They all repeated “extremely rare cancer” several times and were happy to hear that I see the oncologist next week. There are no known risk factors for leiomyosarcoma. I just hit the cancer lottery. Why not the actual lottery? Who knows. Probably because I didn’t buy a ticket.
My surgeon said he’ll see me back in a month, and he fully expects to discharge me from his care at that time. I fully expect to be back at work well before then, albeit without the heavy lifting.
After the clinic visit I got a chest X-ray, and we were all done.
It is amazing how much better my wounds look without the sutures and tape. I haven’t gotten a good look yet, just a bit in the bathroom mirror, but I’m impressed. I still have a ton of sticky residue on my back and side, but we’re getting there. I’ll have to find some adhesive remover. My poor skin has been punished enough.
So tldr, I’m doing well. Thank you guys for all of your support!