But it doesn’t happen. Physically strong and optimistic against all odds, I go through the second cycle of immunotherapy without major problems. I am now halfway through the twelve weeks of the clinical trial and feeling good. With each IV drip, I imagine my newly emboldened T cells leading the army of my immune system to attack and defeat every melanoma cell in my body. I will it to happen, I will all of the cancer cells to die. They must die.
I’m full of hope and energy. Nearly every day, I run or walk a few miles. Nearly every day, I go to work and complete my tasks with no problem. With every bone in my body, every neuron in my brain, I believe that I am on the mend.
And then—everything breaks down.
I never see it coming.
4
Derailed
Sometime after the second infusion, my body turns on me.
Modified by the drugs to sense danger everywhere, my immune system has been on high alert since the first infusion. Now, after the second one, it begins to attack not just the tumors in my brain but healthy tissue throughout my body. This autoimmune reaction causes inflammation in my skin, thyroid glands, and pituitary gland, a tiny structure in the innermost part of the brain that controls the flow of hormones to the body’s other glands, including the adrenals. Soon, my thyroid stops functioning, forcing me to take replacement thyroid hormones; I also begin taking prednisone to stop the rashes and fill in for the natural steroids that my adrenal glands have stopped producing and without which I would experience serious fatigue, muscle weakness, and weight loss.
My skin bothers me most. From my scalp to my feet, and especially on my back and butt, I’m covered in a red, itchy rash. I have trouble sleeping, and I have to scratch, scratch, scratch. I lather soothing steroid creams all over my body, which help for a while, but soon the itching comes back, and I scratch again. The only relief I get is when I stand in the shower with lukewarm water cascading over me.
And there’s another side effect that I can’t ignore anymore.
“I really need to take care of my arm,” I say to Mirek. “Look how swollen it is. It’s very uncomfortable.”
When my left breast was removed six years ago, almost all of the lymph nodes under my left arm were taken out too. Without the nodes, lymph fluid can’t drain properly, and it builds up in the tissues in my arm, causing it to swell, a condition called lymphedema. My engorged arm has been a nagging reminder that I’m not 100 percent healthy, so over the past few years I’ve ignored it and endured the discomfort and puffiness. Now, however, immunotherapy is aggravating the lymphedema, a side effect that I knew was likely. While I see it as a fairly benign consequence of the treatment that may save my life, it really hurts. I can no longer put off getting help.
I call the reception desk in the department of physical therapy at nearby Inova Fairfax Hospital and ask for an appointment. There’s nothing open until mid-June, weeks from now. I’m surprised and dismayed by the delay and try to convince myself the time will fly by so fast I won’t notice. But my arm is really sore.
I decide to take my mind off it by making a quick trip to see my daughter and her family in New Haven. It’s been a month since we were together and I yearn to see them, to spend as much time with them as I can while I still have the time to spend. My third infusion is scheduled for May 26, a week away. I’ll be on a northbound train the very next day.
May 27 dawns hot and humid, a taste of the brutal summer that will soon stifle the mid-Atlantic. My left arm is swollen and aching, and my full-body rash is driving me crazy. But my physical discomfort is dwarfed by the joy I feel at the thought of seeing my daughter, son-in-law, and grandsons. Not for a moment do I consider canceling my trip.
At noon, Mirek drops me off at Union Station in downtown Washington, DC, and I board the Amtrak to New Haven. I clamber onto the train with my few belongings in a small suitcase and head for the quiet car, where cell phones and loud conversations are banned. I find a window seat in a row with no other passengers, nestle into the cushions, pull a book from my purse, and cherish the solitude.
The train rumbles slowly across Maryland, then New Jersey. Then, in the middle of nowhere, it grinds to a halt. Through the window I see empty fields, green and expansive pastures, and a few trees dotting the landscape. There’s no station in the vicinity, not so much as a house.
After a moment, the lights in the train and the air-conditioning system go out. All of the electricity has been shut off.
We wait in total silence, a quiet that I appreciated a short time earlier. But not anymore. This silence is irritating. It lacks purpose.
I place my bloated arm on the narrow windowsill. It’s too high and makes my arm even more uncomfortable. But the armrest doesn’t work either; it’s too low. My arm is painful, my hand swollen. I stare at its fingers and palm, so fat and tender that they look like they could burst.
Why didn’t I call the therapist sooner?
I try to focus on my book, try to be patient and relax, to no avail. My discomfort persists and the delay grows; minutes tick by and we’re still not moving. There are no announcements, and no one in the train car seems to know what’s going on. Finally, after at least half an hour, the loudspeaker crackles.
“There’s a problem on the tracks.
