Dealing with Desmoids
During a second teleconsult on October 6 to discuss results from the MRI, the doctor drew arrows to point to the cluster of desmoids in my abdominal wall. All he or I can really do is look on.
October 8, 2020
“Do you take anything for anxiety?” my Nana asks me as I walk out the front door for a sec, her warm timber voice responding to my quickly rattling on and on about how I have so much stress weighing on me, even more now, with the stomach polyps—and now the desmoid tumors too. It’s been so much, and at such a deeper level, this dread of the desmoids and of their potential growth; so her question is right-on. I appreciate the pertinence of her question for as I step out onto the fresh air of the front porch to run and get my son from my mom’s.
What do I take for this anxiety? Breathing in, I say “fresh air,” smiling back at her, as she smiles as she nods her head at a three-quarter profile. “And concentrating on my time with Julien and the things we do together,” I quickly add, in all seriousness. She fully nods in her armchair, her short, faded red hair framing her silhouette in her gentle way. She, the grandmother who had gotten on her knees and wrapped her arms out around me to say that if she could take this disease upon herself she would. This, when I was first diagnosed and going through the barrage of doctor appointments and practical decisions to make.
Before this diagnosis of desmoids, which happened to coincide with the breakout of Covid-19 and the pandemic in the US, I have never had so many tears run involuntarily down my cheeks in the middle of the night, with the only thing to do is to accept. To tolerate the pain. To hope for no chemo. To consider the quality of the rest of my life—and wonder if this is the best I would ever physically feel. To make sure I am seeing the right expert doctors. To think of the worst possible scenarios and worry about fatigue from chemo while raising my son. To read some of the terrible stories of other desmoid patients.
Yet I will decide to do more than just breathe and be present to my son as much as possible as the news (or terror at times) settles in deeply: I will give up my weekly glasses of wine that I didn’t need anyway. I will reduce sugar and fried foods, whittling down, maximizing only the healthy nutrients my small intestine and stomach—alone—can absorb. I will spend money and time on supplements and fill my own do-it-yourself pill capsules. During the first presidential debate of 2020, before Trump came down with Coronavirus, I would therapeutically stuff each vegetarian capsule full of Ashwagandha (a known adaptogen to help the body process stress), or chlorella, or spirulina, or amla powder. I would buy a whole sleuth of natural supplements and vitamins to support my body and immune system, inspired by scientific research on the benefits of Pycnogenol (French Maritime Pine Bark extract) and Traditional Chinese Medicine like Huang Qin and Shi Quan in reducing the side effects of chemo and suppressing regular tumors.
I had come to my Nana’s house to be able to speak with my sarcoma doctor at Dana Farber without interruption. Being that the pain in my abdominal wall had increased over the past three months since my last CT scan in June, and particularly in the last few weeks, I wanted to hear every word he’d have to say in the teleconsult. I had left our in-person consult following my three-month check-up CT scan with the news that there was no significant growth, but the test results had come to my inbox in Patient Gateway a few Friday nights later with comments of slow growth for one tumor, and mild growth for another. It should be against the law for the automated system to send test results to patients in the patient portal after 5pm on a Friday when the patient can only wait all weekend and wonder before being able to speak with a doctor or nurse.
There is no significant growth, I hear my doctor say again, at least not enough to warrant the toxicity of chemo at this time. This, despite the increasing pain. The doctor and I decide that the next scan must be an MRI, as some of the tumors are not visible in the CT scan. Neither my doctor nor I am enthusiastic about starting chemo. If the desmoid in the abdominal wall (stage 2 because symptomatic) grows, I would be put on a chemo at four times the dose that a breast cancer patient takes. If the one in the mesentery were to grow, the more dangerous desmoid because of its location, I would be put on an even more toxic chemo. The doctor had gone through all of the potential side effects of the chemotherapies in our in-person meeting on September 11, following the initial results of my third CT scan this year (my eighth CT scan since my diagnosis of F.A.P. in 2016). That was enough to freak me out and begin to see chemotherapy in my possible future.
Today, I don’t know where I stand with it all. On which side of the line: hope for no chemo for the rest of my life—or more realistic expectations that at some point, or multiple points, I may be going through some very serious rounds of toxicity? I’ve looked into cyroablation and asked my doctor if this can be done on the symptomatic desmoid in the muscle wall, but to date it’s only been done twice at Dana-Farber—once with success, once without. For now, I can tolerate the pain, but I can assure you it is real, and it is emotional.
Though extremely smart and kind, my local oncologist had failed to understand that this diagnosis of desmoids is an entirely new level and new diagnosis. Back in June, I told him this is very emotional because I can feel the pain, increasingly, and almost constantly. He looked at me and said: “Well, we knew your life was never going to be the same when you were diagnosed.” I processed what he said in the silence that followed. It took until I left and reflected to have something to say back: No, this is a brand new diagnosis. In 2016 I was diagnosed with F.A.P. and needed a colectomy. I had no idea I would become one of the 10–15 percent of F.A.P. patients to develop desmoid tumors. I certainly did not feel chronic pain like this until now. And I certainly didn’t have to deal with visceral anxiety and triple the fears as I had then. The threat of colon cancer could be mostly removed with a surgery—but Desmoids are largely inoperable, though some surgeons still operate—despite the fact that we now know that it is likely that the desmoids would come back multiple and inoperable. Wait and see is the best solution… and when they grow, if they grow, then chemotherapy. It is not an easy prognosis.
Radiation is not an option for tumors in the mesentery—too risky. Cyroablation is something I may inquire more about as I have read some good things on the private “Desmoidian” facebook support group.
All I can really do for now is hope, pray, and be proactive regarding my overall health and sense of well-being. My eternal thanks to my family who does their best to support me emotionally at this time, and to my friends who keep lifting me up in spirit and prayer from afar.
Entering a CT Scan at the local hospital. My desmoids were diagnosed in February 2020, just as Covid-19 was exploding around the globe. From here on out, my imaging will be done at major cancer centers, as it is their preference to use their own radiologists for rare things.
