A Message: Unplug “Light Chemo”

After one of my monthly blood tests, I received a call. I was at the ceramic studio on my mindful day. Art is my food. I usually do not answer calls or texts in my space, centering, forgetting, remembering, dot after dot, fingers, clay, circular moments, and breathing. But I noticed the number. It is saved under my contacts. I answered, “This is Dr. K’s assistant. She wants you to stop the methotrexate due to high liver functions immediately. She wants you to test again in two weeks and see you in the office.” It was a Friday when I usually took my treatment and held on for a rough weekend. “What does this mean?” I thought, “What’s next?”

For the following weeks, I lived in a state of confusion, yet enjoyed the days without side effects, without nausea, without holding onto Netflix shows and texts to my friend Robin to distract me during difficult moments, weekends filled with silly emojis and silly videos, breathing my way through treatment one text and one movie at a time.

I heard the whispers of the wind in the car. I amplified the volume of my French music, of my 80s albums, and of the hand claps each time I drove in the morning, in the rain, in the snow, in the sun – I enjoyed each face of nature like a kiss reminding me to live. From that moment, I felt a blessing, a hand to hold onto while I step forward to the days ahead.
Time to visit Dr. K, “Your blood results are better…Your lungs show some fibrosis…How do you feel about starting Cellcept, a medicine also given to transplant patients to suppress the immune system.” That is all I remembered from an hour’s examination of my extremities, fingers and toes, pictures, and lab results. “How do I feel about it?” I thought, “Do I have a choice?”

I found myself at the pharmacy reading a long list of side effects. Some included:

asthma, herpes simplex infection, infection, metabolic acidosis, oral candidiasis, pleural effusion, respiratory tract infection, systemic cytomegalovirus disease, urinary tract infection, viremia. “What in the world is this list? I don’t understand most of this,’ I thought

abdominal pain, acne vulgaris, “Is any acne not vulgar?”

anemia, anxiety, “I feel anxious just reading this list.”

asthenia, back pain, cardiovascular disorder, chest pain, constipation, cough, depression, diarrhea, disorder of integument, drowsiness, dyspepsia, dyspnea, edema, fever, headache, “I have one already.”

hypercholesterolemia, hyperlipidemia, hypertension, hypertonia, hyperuricemia, hypervolemia, hypokalemia, hypotension, “enough with the “h” fancy diagnoses!”

increased lactate dehydrogenase, increased serum alanine aminotransferase, increased serum aspartate aminotransferase, increased serum creatinine, leukopenia, lower limb cramp, myalgia, myasthenia, nausea, pain, paresthesia, peripheral edema, pulmonary disease, rhinitis, sinusitis, tachycardia, thrombocytopenia, tremor, vomiting, weight gain, chills, and flatulence. “this list is pure flatulence.”

malignant neoplasm of skin, dizziness, and insomnia. “Great. I already have insomnia. Let’s increase it!”

I could barely swallow the first pill. Due to scleroderma, which affects connective tissues and does damage multiple areas of the body, including the gastroenteric, I experience difficulty swallowing, especially elements than cannot melt or are fluid by nature, such as pills. My Cellcept medication did not want to go down…I had to breathe and not give up. “do not spit it out!” I kept repeating to myself. One pill, one moment.

I might gain one moment with my children, “Do not spit the pill! Each pill equates to a moment gained with my children. One moment. It could be the moment my youngest son Nikolai graduates High School, could be the moment my son kisses his wife at his wedding, could be the moment I hold my granddaughter in my arms when I pick her up from school, could be a moment when I step my toes into the ocean, one last sushi outing with dear friend Mae, one poem, one smile, one laugh, one pear picked up from my tree, one bite into life, one last round of wheel throwing at the studio, one last cheesecake for my Mom, one last silly emoji to a dear friend Robin, one last bite of chocolate, one last sip of coffee.”

One pill. One moment. One breath.