Ursula: the tumor origin story
2011 to present
Like all good stories, let’s start at the beginning: May 2011.
I found the lump on my back while attending Kristy’s graduation. I thought it was the stadium seating—the chair with an uncomfortably sharp edge. My physical therapist friend advised I get it checked out ASAP. Trying not to overthink it, I got a biopsy a week later at Kaiser. The doctor discovered I have a rare tumor “friend” know as a Desmoid Tumor, aka Aggressive Fibromatosis. I call her Ursula.
She has tentacles, malicious intent, is relentless, and really f***ing hard to kill. Borderline impossible. Instead of the sea, she lives in my fascia, the connective tissue between the skin and muscles.
Since 2011, I’ve had two surgeries, two months of radiation, one trip to the ER, two experimental operations (called HIFU), and three chemotherapy treatment protocols. I’ve tried Ayurvedic medicine, a “plant-based” diet (aka vegan), yoga, meditation, essential oils, and more supplements than I care to count.
In my experience, she is either in a state of rapid growth or shrinkage, which I’ve experienced multiple times in the past four years. Unfortunately more growth than shrinkage. I’m currently on an IV-form of chemotherapy called Doxil, which is administered monthly. I’m tolerating it much better than previous chemotherapies, with which I had intense neuropathy (making it hard to walk), difficultly digesting food, and hair loss, weight loss, among other symptoms. My hair is growing back (with chemo curls), I ran a half marathon last March, and I can eat like a champ. A recent scan showed progression but my pain is less, which was not enough to jump for joy, but enough to feel hopeful.
About Desmoid Tumors
Desmoids are one of the rarest tumors — you’re more likely to get struck by lightning than have one of these (only 2–4 people per million, <900 people per year diagnosed in the US). It’s caused by a mutation in the DNA, and typically is activated through impact, i.e. a broken limb or pregnancy. Cells (fibroblasts) turn on to repair the tissue but mine are missing the “off” switch that normal cells have. So the cells keep reproducing and reproducing. These tumors don’t invade, instead opting to push on things like my ribs.
The doctors don’t like to surgically remove Desmoids because the recurrence rate is over 50% (inflammation from surgery tells any remaining cells to keep reproducing!). Most of the treatments are cancer treatments, and the rate of growth is in-line with cancer. The verdict is still out on if Desmoid Tumors are officially “cancer” because they technically don’t metastasize. But I can tell you having been treated by cancer centers for the last 9 years, it sure as hell feels like cancer.
They are most commonly found in the abdomen and, depending on location, can cause all sorts of internal issues, including death.
Early lessons
More than anything, Ursula has provided the opportunity to become a student of my body. A witness to the physical and emotional processes we hold inside.
Uncertainty
If you know me, you know I love a good plan — calendar invites, planning spreadsheets, goals, and checkpoints. As long as I feel like I’m in control, I can let go and trust the process. The uncertainty of this disease (every treatment option has ~30% effectiveness rate and the sample sizes are tiny) has challenged me to the core. I’m not sure how much “better” I’ve gotten at this, but one this has CERTAINLY done is highlight a growth area for me.
Healing
The Book of Joy talked about the difference between healing and being cured. You may not be able to find a cure, but it is always possible to find healing.
“Adversity, illness, and death are real and inevitable. We chose whether to add to these unavoidable facts of life with the suffering that we create in our own minds and hearts…the chosen suffering. The more we make a different choice, to heal our own suffering, the more we can turn to others and help to address their suffering with the laughter-filled, tear-stained eyes of the heart. And the more we turn away from our self-regard to wipe the tears from the eyes of another, the more- incredibly- we are able to hear, to heal, and to transcend our own suffering. This is the true secret to joy.”
― Dalai Lama XIV
When Ursula came back in 2016 after a five year hiatus, my focus was 100% on curing myself. Attack and die! I gotta life to live…and an Ironman to complete.
When the HIFU didn’t work, we tried radiation. For treatment, I would bicycle over to UCSF five days a week, between classes, for a 20 minute “zap”. While in a low point, I planned a future funeral date for Ursula, once again anticipating her death.
Radiation did the trick, for 6 months. And by March 2018, she was right back where she started. I tried HIFU a second time and soon after met the surgical team at Ohio State University, whose advice I took and proceeded with (a massive) surgery. I have mostly recovered from the surgery—it left permanent scaring on most of my back, which transitioned to a partially open wound. To give you a sense of the trauma, I literally did not look at my back for over a year. At first it was by design (Mark covered the bathroom mirrors with butcher paper), and then it was by choice. The UCSF plastic surgeon insensitively said it looked “like a shark bite.” As soon as the wounds healed, Ursula came back again, but this time in four places along the perimeter of the surgery, requiring me to turn to chemo.
As this journey continues with no end in sight, I have slowly transitioned towards a mindset of acceptance and love. I attempt to speak positively to Ursula, to check in, and see what she needs. I have slowly let go of my suffering and moved to a place where I can mentally and emotionally help others and surround myself internally and externally with joy.
Thank you to my parents, family, and friends for the flowers, meals, sleepovers, house keys, check-ins, emotional support, and for riding this roller coaster with me.
With love,
vanessa
P.S. If you don’t have an Amazon Smile charity chosen yet (% of Amazon sales donated), think about choosing the Desmoid Tumor Research Foundation. They are doing a lot to support and find a cure for this rare and terrible disease.
P.P.S. I love hugs and will accept them at an acceptable social-distanced length for now