06/06/2022
Enjoying my last swim for a while... I sure love to swim but being so sick has made it virtually impossible! I'm taking the time tonight to recharge my battery before heading off to Ayala Pharmaceuticals Clinical Research Trial tomorrow in Minneapolis, Minnesota. I'll be there for only 24 hours and then back home again, but I'm looking forward to meeting all of the other Desmoid patients!
So status update, since it has been a while! My tumor came back as a type of non malignant cancer called "soft cell sarcoma: desmoid fibromatosis." Of the types of cancer you can get, it's one of the better ones because it doesn't spread throughout the body. That's why desmoids are often called "benign", but in reality they are rather insidious. They like to come back even when cut out really well: there's an up to 70% chance that my tumor will be coming back, but I am staying positive!
Positive only gets you so far, though, so I applied for this clinical trial for a new oral preventative medication. If all goes well, I will be included in phase 2b. *fingers crossed* At the very least, I will get a free trip to Minneapolis at a 4 star hotel for free, so I won't complain!!!
When I get back, I have surgery on Wednesday to finally get a port put in to make medication taking a lot easier. So far I haven't needed chemo since they think they have clear margins, but I have an MRI scheduled for next month to verify. I need the port more for IV fluids and antibiotics since I have now had 4 seperate bacterial infections!!! Who knew missing a spleen was such a big deal? Hopefully the port surgery, a 30 minute procedure, is worth it! ANYWAYS, with all the antibiotics came vomiting, and because of the vomitting I developed a hernia last week.
I go in to Lubbock on Friday for a consult with Dr. Bayouth, the surgeon I originally spoke to for my initial surgery that had a waitlist. I like him and I trust him, I just didn't want to have to wait back then. A hernia isn't TOO serious unless there's an entrapment, so I can wait a bit for him. All in all I'm honestly frustrated. I knew that the road ahead would be challenging, but I am honestly over all of this. 😑
So for now, I self care. I'll spend another 30 minutes in this whirlpool bath at the Holiday Inn Express in Roswell, then head upstairs and take a bubble bath to ease my aching muscles. I got a lot of productive things done around the house this weekend, so I feel super efficient and mentally prepared for my upcoming incapacitation. I'm going to miss my fellow Board Members for tomorrow evening's meeting, but it's for the best! I know they have my back while I'm gone.
