A Pain in the Neck

After a night of fitful sleep and weird dreams, I went in for my MRI early this morning. As I suspected, the news isn’t good. At first it seemed like the tumor may have grown, but I think the official word is that it just stayed the same and the chemotherapy didn’t make much of a dent. There’s usually a 70 percent success rate for the chemo, but as always, I fall into the unlucky group. (Being in the group of Hodgkin’s lymphoma patients that chemo didn’t completely eradicate, not responding to the clinical trial, having a second type—and relatively rare—type of cancer, getting the cancer again, not responding to this chemo.) I am not surprised, just disappointed.

The doctors are concerned that I’ve been feeling so terrible. The last few days of fever, chills, fatigue and nausea don’t seem to be related any viruses (cold, flu, etc.). Today, my fever and chills don’t seem as bad, but I’m still fatigued and generally pretty run-down. The peripheral neuropathy has really been affecting my quality of life. Right now I am getting some IV fluids to hopefully get me feeling better and more hydrated.

I thought they were going to do a PET scan today, but I was just told it’s next Tuesday. They’re going to try get a full picture and make sure there isn’t anything that has been missed. They are also checking to see if these tumors are producing hormones that are causing some of these symptoms. They already know that my tumor is a little bit on the aggressive side; mine if more poorly-differentiated than they would like.

I hope they find out what might be causing me so much discomfort and can maybe help with these latest symptoms and neuropathy. I know they’re also trying to determine the best steps to take to treat the tumor: ablation, more chemo, clinical trials. I’m worried they’ll find some other terrible thing on the PET scan.

Shortly before his death, Leonard Cohen said, “I am ready to die. I hope it’s not too uncomfortable.” I am not ready to die, but I do hope that what awaits me isn’t too uncomfortable or too painful.

The hardest thing has been hearing my boyfriend’s voice catch when he asked the doctors some questions about my quality of life. He’s been there when I can’t sleep because of cramping feet and legs, or when I wake up with my heart racing. He accompanied me to the ER on vacation in October. He’s seen me cry because of the pain in my legs and has seen how scared and frustrated these symptoms have made me. It was also hard to hear the tears in my mom’s voice, because she has been so hopeful.

As sad as I am that this disease is hurting people I love, I am grateful for everyone’s well-wishes. I am also inspired by so many of you. When I talk about not being able to make any plans because of such an uncertain future, one of my friends reminded me that you can’t think like that. (She should know—she just wrote a book about her family’s fatal gene disorder.)

As I sit here on this nice day hooked up to an IV and watching people walk by on the street in my old work neighborhood, I’m reminded of a book I read recently: My Name is Lucy Barton by Elizabeth Strout. The opening paragraph reminded me so much of the month I spent at Sloan-Kettering for my stem cell transplant. Except I didn’t have a view of the Chrysler Building from my room (though I did from my old work office around this very spot) and I just had a sliver of sidewalk I would hungrily watch for any pedestrians during lonely afternoons. “There was a time, and it was many years ago now, when I had to stay in the hospital for almost nine weeks. This was in New York City, and at night a view of the Chrysler Building, with its geometric brilliance of lights, was directly visible from my bed. During the day, the building’s beauty receded, and gradually it became simply one more large structure against a blue sky, and all the city’s buildings seemed remote, silent, far away. It was May, and then June, and I remember how I would stand and look out the window at the sidewalk below and watch the young women—my age—in their spring clothes, out on their lunch breaks; I could see their heads moving in conversation, their blouses rippling in the breeze. I thought how when I got out of the hospital I would never again walk down the sidewalk without giving thanks for being one of those people, and for many years I did that—I would remember the view from the hospital window and be glad for the sidewalk I was walking on.”

I am grateful I had those several worry-free days in Barbados. (Well, they weren’t completely carefree—the water in the hotel’s rooftop pool was cold and there was a fruit fly in my tropical juice. You have no idea how I suffered.) I knew I could be facing some bad news and I wanted to savor the time before I could face more uncertainly, barrages of tests and treatment. Also, I didn’t get sick until I got back, and for that, I am very grateful. Next Friday, I should have some answers and info about the plan.