Hi, everyone – it’s been a while!
I hope you’ve been enjoying the last days of December. I wanted to give you an update on where I’ve been and where I (think I) am going.
December 2019 Scan Results
In case you haven’t already heard (quick reminder: you can find me on instagram @girlmeetscancer, it’s where I’m spending most of my social media time these days), the results from my December MRI are back. My tumor is continuing to shrink! It’s down another 0.7 cm overall, which brings my total shrinkage since beginning doxil to 1.4 cm total. I celebrated with a Christmas themed selfie in front of my tree.
Treatment in 2020
After my infusion last week and meeting with my oncologist, we agreed to another three additional rounds and a scan. So I’ll have infusions number eleven and number twelve in 2020, followed by a scan. And then, it’s a big question mark.
The hard thing about desmoid tumors is that they are, in my oncologist’s words, “notoriously unpredictable.”
Treatment: My treatment options are – how to put this? – either dismally uncomfortable or not medically appropriate. There’s one other commonly used IV infusion, but it’s insanely aggressive and would treat me worse than doxil. I’m not a candidate for HIFU or cryoablation, which are high-tech surgical procedures, since my tumor is too large and too close to my brachial plexus. That leaves oral chemotherapy, of which there is one viable option remaining: pazopanib. Pazopanib is related to Sorafenib/Nexavar, the drug I was on for 9 months last year and gave me a whole host of issues: constant nausea, vomiting, emergency room trips, etc… only Pazopanib’s side effects are reportedly worse, which makes it very unappealing as well.
- Here’s why pazopanib could be awesome: It could maintain the shrinkage that I spent a year to gain.
- Here’s why it is scary: If all goes according to plan, I’ll be headed back to work once doxil is over… only I’ll be headed back then on a drug where I can expect nausea, vomiting, and more GI issues.
Active Surveillance: There is a chance that doxil switched my tumor into a pattern of stability/shrinkage that it had previously not seen, and that’s potentially a vote in favor of active surveillance (what is sometimes referred to as “wait and watch.”) Meaning, I’ll go off of all medication and get scanned after a specific amount of time to see if this thing is growing/shrinking/stable (which sounds like the name of a terrible reality show).
- Here is why active surveillance could be awesome: Boy oh boy, do I miss my body. It’s vastly different than the body that I’m in now. My body, free of chemo, free of treatment side effects…. I can’t quite remember what it’s like to not have pain caused by treatment, or fatigue, or nausea, or some combination thereof every day. I’d love to see what this old girl can still do.
- Here’s why it is scary: I could lose all of the shrinkage I fought so hard to achieve over the past year of doxil infusions. My tumor has never been stable without medication. The idea of this leap of faith terrifies me.
* If I were to go on active surveillance and my tumor were to grow, I would be eligible for a clinical trial that’s currently enrolling… but only if it grows 20%.
** If I enrolled in the trial, and I’m the control group that’s getting the placebo and my tumor continues to grow – I’d be switched to receive the drug… but only if it grows 20%.
*** I’m potentially looking at 40% overall growth before getting actual treatment.
As you can see, there’s a lot of different factors to consider. It’s hard not to look at everything and be overwhelmed, so I try to look at it one step at a time. Some days I do a pretty decent job at achieving this perspective and other days it’s a glorious mess. So it goes.
2019 in Review
I’m trying really hard not to fight this deeply engrained thought that I haven’t accomplished anything this year. I didn’t get to do… well, a lot of what I love. It’s hard to fight this notion that productivity is the only important measurable outcome of life, not just because I’m inapprorpiately Type A, but because people always ask how I’m “staying busy” while on disability, or how I’m “keeping my mind sharp.” The truth is, I’m resting 25 out of 30 days of the month. I’m watching The Golden Girls, napping, or working on a puzzle. (If that kind of productivity matters to you, I finished 6.5 seasons of The Golden Girls and finished 6 puzzles.)
At the end of the day, I stayed alive, and I try to tell myself that’s enough. And when that doesn’t work, I try to focus on numbers that help me feel proud, even if it’s just for withstanding.
$150,000 worth of chemo
$11,029 raised by the Unicorn Squad for the Desmoid Tumor Research Foundation
1,732 miles flown for CancerCon
900 miles traveled for infusions
210 miles traveled for a second opinion
76 members of the Unicorn Squad at the Running For Answers 5k
30 total researched social media posts for the Desmoid Tumor Awareness Month
7 prescriptions for chemo side effects
2 surgical consultations
1.4 cm of shrinkage
1 tumor, measuring in at 4.9 cm by 10.9 cm by 8.2 cm.
This is not at all what I thought my life would look like at age 30. I’m still angry about it, to be honest. I still feel robbed of normalcy. To deny those facts would mean taking the humanity out of this experience and reducing the narrative to a neat, linear story. I’m not interested in either of those things. I’m here to tell the truth.
So here it is, the truth in all its messy complexity and unpolished thoughts: I don’t know what any of these pieces or numbers or treatment options mean. I’m grateful in some ways and very much aching in others. I feel simultaneously more connected to other patients than ever and also so lonely it hurts. At the end of the day, all I can hope is that the noise I made this year, whether advocacy, fundraising, or simply shouting my story loud enough so someone will hear, means that someone else will someday enjoy a greater sense of normalcy.
Thank you for reading. May we all experience health, peace, and joy in 2020.