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.
Not just pain, but the fear of pain can change the way you act. I was reminded of this when I saw my dog, Lucie, favor her back left leg as she walked up the first couple of stairs, remembering an old strain. She then realized that her leg didn’t hurt at all and continued […]
“Hope is the thing with feathersThat perches in the soul.” – Emily Dickinson I sit here on the 5th day of chemo, wrapping it up with very few side effects, and I’m glad for it. But the uncertainty of whether this works and what the future looks like wears on me when I get bored, […]
Throughout the cancer stuff, I want to scream. I have to remind myself: you’re allowed to scream. In fear. For joy too though. With indignation. With relief. While sitting, traveling, doing things you never thought possible. Things you’d never thought would be for you. Good and bad. You’re stronger after. The feelings aren’t weakness. The […]
(I write this to my children) As I sit in the hospital with the drips of the second round of chemo starting, I want you to know that I fight for you every day. This is the “Second Line” of chemo, meaning due to toxicity, I’m not allowed to take the same chemo that I […]
Don’t waste your: FOMO. Regret. Path not traveled. Worry for the future. Cancer experience. All of these strong feelings come from gifts. That’s a tough and powerful statement. It’s tough for me to reconcile that idea when inpatient in the hospital. When suffering in the heat. When… But I’m comforted by a great power of […]
I’ve never smoked. So visiting Europe, where many people smoke or vape, repeatedly confronts me with something that makes no sense. I have cancer in/near my lungs, caused by cancer from my leg, but not from smoking. And I’m surrounded by people who are smoking but have no lung cancer. I know this is only […]
Let me first start by saying how hard it is to write these posts on trains riding through the Alps between cities when tons of beautiful views keep rolling by. It’s like trying to write a poem about a beautiful woman instead of dancing with her. I try to do both at the same time. […]
It’s been hot in Europe since last Saturday. As I arrived in Italy, I had prechosen the town of Bolzano to base out of for a two nights. I had picked a hotel near the main train station but past that I did no research. 😁 Fun, huh? Ambi loves it when I do that. […]
Me: I think you have the most beautiful hotel views I’ve seen in a long time. But living here, you must get used to it.Hotel Attendant: Yes. But when the first snow falls on the mountains, it feels like the first time. I saw dozens of children playing in the park next to this river. […]
To myself: You have to be ok with sitting with yourself. I say in the long summer eve under the Chinese tower in the English garden. Do you forgive yourself for missing the cancer? You should. Even if it wasn’t a tough time in life. Even if it wasn’t a rare cancer. Perhaps there is nothing […]
