After over a year of misdiagnosis, Alex was surprised to learn he has Stage 4 Sarcoma. Right now the consensus diagnosis from several institutions is Rhabdomyosarcoma acting like Undifferentiated Pleomorphic Sarcoma. Both are rare, aggressive cancers of unknown cause, and are especially rare for someone at Alex’s age.
The Pancake family has been learning and adjusting to their new journey. Inpatient chemo, many blood draws, scans and appointments are the current path. But they have been working through it together, and with the support of their community through meals and childcare.
They’ve always been independent people who like and want to do everything on their own. But they’re slowly learning how to accept help too. Every bit of support, financial and otherwise, is wholeheartedly appreciated.
“a PARP inhibitor, olaparib or niraparib, not like you’ll remember those names”, is what my doctor said. I wrote them down because it seemed unreal. Yes, there is a pill that has a good chance of killing my cancer if it comes back in the future. When they cut out my tumor, they had a…
First time caller. That’s what I thought of when I got to see a lot of my friends this weekend for the first time in months. I heard from many quiet, solid folks who read my blog and like to work hard in relative obscurity. I like that a lot about the mentality of people…
I’ve alluded to the posts being half for me. I’m often only half sane when I write them due to sleep deprivation from the hospital or otherwise. But I do want to try to remember everything afterwards. And I know how hard that can be, especially when chemicals are stewing around post-anesthesia. So I write…
True, like an arrow that hits its mark. Like paging the weekend’s on-call physician who then coaches you through changing your wound bandages and vac over the phone for 30 minutes. Noble, like the king with authority to definitively solve any conflict in his realm. Right, like you know what to do, even though it’s…
I told Ambi early in our marriage that when I stop talking is when I’m really mad. I stopped talking after the surgery as they wheeled me to the observation floor. I didn’t say a word for 10 minutes. Ambi knew I was upset and rubbed my head as she followed behind the nurse pushing…
I’m waiting for follow-up plastic surgery on Tuesday and I sorely need it. Things are falling apart. Both my thigh wound and foot wound are not doing well. I hope I make it to the surgery without them ripping open and hurting more. Time to distract myself with music… “Things are gonna change now for…
Despite how much I share on here, there are some things that I don’t want to. They’re too hard. Too gross. Too personal. Ambi is with me through them all. She’s amazing. Thank you, Ambi, for all the things I don’t write about or talk about. You’re a great wife and mom. Coincidentally, Happy Mother’s…
Dr. John Alexander was the surgical oncologist who cut out my leg tumor. https://cancer.osu.edu/find-a-doctor/search-physician-directory/john-h-alexander He deserves credit for the clear margins of my soft tissue tumor. He did the cut without robots and skimmed along the margin between my soft tissue and bone/muscle. The final closest margin was 1.1 mm near my tibia. For comparison,…
It can be hard to focus on the good with all of the loudness that plastic surgery and small children bring. But I wanted to give you a simple update. Lungs: the post surgery biopsy showed that all three wedges had the same cancer (pleomorphic rhabdomyosarcoma) as in my foot tumor. But all three wedges…
The reward for surviving surgery is more surgery, it seems. I talked with the plastic surgeon today. They’re going to need to do surgery for the skin pulling away at my thigh, a dehiscence. And there’s a second place on my foot at the tip of the flap that isn’t going to make it. (I’ll…
