Like so many others, Zoe and her family are struggling to keep up with life in general. In addition to havinga young child who can’t yet be vaccinated, Zoe is going through long-term treatment of a large tumor in her right shoulder and back (more info below, from her Facebook post). It causes a great deal of pain and makes it difficult to take care of everyday tasks, and the medications have side effects that include fatigue, brain fog, and arthritis-like pain in her hands and feet. Knowing that they have one night a week where they don’t have to think about and prepare dinner would be a great help.
“One year ago, I finally got to see the giant hitchhiker, we’ve named Fred, who is hanging out in my back causing years of increasing pain and dysfunction. Getting to see an image of this tumor, roughly 7″ long and up to 2.2” from front to back, was both a relief and terrifying. It was another month before I got an actual diagnosis, 2 months until I got in to see the appropriate specialist at U of M, and 3 months until I started treatment. That first month was the most terrifying, as more and more things were ruled out and it looked more and more like an advanced sarcoma with a very poor prognosis. Reading “Desmoid Fibromatosis” was initially a relief, as it was classified as benign. However, benign only means “non-metastasizing” in diagnostics, not harmless as we often think. These tumors are aggressive, persistent, prone to recurrence, and often lifelong battles. They are treated by sarcoma specialists in the same manner as sarcomas, just far less likely to kill me than some other sarcomas. They are also a one-in-a-million diagnosis, and not a lot is known about them. Mine is large and invasive, shoving bones and muscles out of the way as it grew between my shoulder blade and ribcage, up to my neck and creeping around to the front of my ribcage. Fred is sprawling and untidy, with little tendrils reaching out in all directions.
Due to his size and location, my current treatment options are limited to various chemotherapies. I’ve been on Nexavar, an oral targeted therapy, for 9 months so far. My 5-month MRI showed no significant growth and the appearance of less activity, which is positive. Hopefully my 11-month scan will show shrinkage as well as decreased activity. Unlike classic chemotherapy, targeted treatments can be taken indefinitely, and I’ll be on this one until Fred or I give up. If this treatment doesn’t work, I will probably move on to one of the couple of drugs currently in clinical trials. It’s been exhausting and frustrating, adding the drug’s side effects to all of the pain and lack of function that Fred causes. I’m tired all the time, haven’t been pain-free in years, and operate at probably 60-75% of my pre-Fred functioning. There are so many things that I just don’t have the strength or energy to do. The drug affects my hands and feet, causes intermittent, intense bone and joint pain that travels around my body, and what feels like arthritis in my hands and wrists. Large quantities of my hair fell out, and are now growing in strangely. I have brain fog on many days, and my brain just doesn’t work as well as it used to. The medications I take to combat pain and chemo side effects come with their own side effects. Despite all of this, it’s mainly invisible, and most people I interact with have no idea.
I’m grateful for excellent health insurance. I have near-monthly hiccups with treatment-related issues, but it has covered over $150,000 of expenses this first year. The chemotherapy alone costs over $10k a month. I’m relieved to have one of the top specialists just 2 hours away as the next closest are 4 and 6 hours away and not covered by insurance. I’m grateful for supportive and understanding family, as this journey has been hard on us all. I have a much greater appreciation of disability accommodations (or lack thereof) and accessibility issues. I haven’t shared much on social media, but am happy to answer questions if you have any. I feel pressure to have a pithy motivational quote to end with, but I don’t. I don’t believe in toxic positivity, I know other people are in worse situations, and honestly, this sucks.”