At age 35, on a beautiful summer day in 2013, the doctor who had done my endoscope two days before called me in for a follow up, two weeks earlier than scheduled. The day of the endoscope, he had said he’d found what looked like a partially healed ulcer and that the lining of my stomach was inflamed. For about three months before this, I’d been full after only a few bites of food (early satiation), slightly nauseous, and had subsequently lost 20 pounds. The doctor quickly told my husband and I that the biopsies had shown stomach cancer cells.
He scheduled me for blood work the next morning, a Friday, and a CT scan on Monday. Monday afternoon, my primary care physician called me in for the results. We brought my best friend with us. My primary care explained that there were inflamed lymph nodes in my abdomen and one near my clavicle, as well as some suspicious spots on my liver. She had already begun the referral process for me to Dana Farber Cancer Institute in Boston. The next day I went to work, told my colleagues, and spent half the day on the phone arranging appointments.
The following week was filled with appointments. The first one was pretty awful. My husband and best friend accompanied me to meet with my primary oncologist and an oncology fellow. They explained that the inflamed lymph node near my clavicle is where stomach cancer likes to go when it spreads. Assuming this was true in my case (which a biopsy a few days later would confirm), I had stage IV stomach (or gastric) cancer, and therefore, surgery was not an option. Shock set in. They explained that chemotherapy would be the treatment of choice and I would be eligible for some promising trial drugs. The good news that came out of this appointment was that the world class radiologists were not worried about the suspicious spots on my liver. The rest of the appointment, frankly, sucked.
It has been almost a year since I was given that initial diagnosis. I’m responding better than to be expected to treatment, and therefore, I’m erasing the “months” part from that prognosis and focusing on years to decades instead.
My most recent scan showed great results. The lymph nodes remain stable. More excitingly, the usual wording on the report is “continued thickening of stomach lining”, but this time it read “perceived thinning of stomach lining”. This is something we were led to believe wouldn’t/ couldn’t happen. Since the stomach lining is so difficult to measure, this also seems to imply that the cancer there is significantly reduced.
As I’ve stated, I’m being treated at one of the best cancer institutes in the world where I receive infusions every other week. I receive the standard treatment for stomach cancer which is called mFOLFOX6 (actually three drugs: Fluorouracil, Leucovorin, and Oxaliplatin). Although four months ago the Oxaliplatin was reduced due to neuropathy. I am also part of a Phase II study of the drug Ziv-aflibercept (this one makes me laugh when the doctors say it because it sounds like something from Dr. Seuss, but I am assured it is the real deal). Ziv-aflibercept has been approved by the FDA to treat colorectal cancer and now they want to see if it is effective in gastric cancers. 1/3 of the participants in the study receive a placebo and since it is a double-blind study, neither my doctor nor I know for sure if I am getting the placebo or the real drug. However, since starting this drug, my normally low blood pressure has spiked and my first port got infected, presumably because of the side effects of this drug (high blood pressure and causing wounds to heal slower), so most likely the real deal and not a placebo. This treatment also involves a portable pump that I wear connected to my port for 46 hours after the infusion to deliver more medicine and then disconnect at home. Every two months I get another type of infusion to strengthen my bones and prevent mets. I can’t remember the name, but I think of it as skele-gro, from Harry Potter.
Every other week, we drive two hours from home. My port is accessed and I have blood drawn. We hang out in the cafeteria until it’s time to meet with the doctors (my primary oncologist and an oncology fellow). Usually a family member or friend joins us. The doctors seem to enjoy my sense of humor. They told me I have a lot of friends in the back room, whatever that means. Then I have 3 or so hours of infusion, almost always with the same nurse, who takes excellent care of me. I am often visited by my social worker, nutritionist, or psychiatrist during this time, which goes faster than you’d think.When I was a teenager, I had to go to Boston Children’s Hospital. I wore Converse sneakers because it was the early nineties, and like I said, I was a teenager. Both a doctor and an orderly commented something like, “Nice sneaks”. My dad and I have often reminisced about this. So when at thirty five I was diagnosed with stomach cancer and the decision was made to go to Dana Farber, I thought, “Well I know how to get special attention at fancy Boston hospitals” and I wore Converse.
My friend who came with us to that first appointment caught on and we were talking about it in front of my sister, who said, “Well, I’ll just wear my Cons on your treatment days” (she already has enough pairs to wear an appropriately different pair each day of Spirit Week at the school where she teaches). Another friend overheard all this and started a Facebook campaign so that on my first treatment day my homepage was flooded with people wearing Chucks. Within a few weeks, there were over 100 people wearing Converse sneakers for me on the days I had treatment or tests. Now, I think it’s closer to 200. These include friends, family, my coworkers, my students, my camp counselor from when I was eight, people from church, and the friends and family of all those listed above. Complete strangers are wearing Chucks for me. People have posted pictures from South Africa, Costa Rica, Australia, Paris, London, Jerusalem, the press room of the White House as well as the State of the Union address, and the Great Wall of China. I’ve put many of these pictures into a book I made on Blurb. The week after I finished the book, my cousin posted a picture of herself snorkeling in Hawaii with her Cons, so I had to start making another book.
On the day of my second treatment, my oncologist walked in and commented on my Chucks, “Orange today”. So I explained my theory about getting special attention at fancy Boston hospitals. He replied, “Well it is the first thing I noticed about you today and commented on, so it seems perfectly logical to me”.
Sometimes it’s overwhelming, all of this love and support, but I know I couldn’t do this without them.