A Message: Unplug “Light Chemo”

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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.

 

“chemo-like” or “chemo-light.”

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A few months ago, my rheumatologist. Dr. K sat down with me seriously and gave me options. She was very kind and supportive, yet I only heard “chemo-like” or “chemo-light.” It took me a while to process and comprehend. I discovered I didn’t know much about medical science, healthcare, and pharmaceuticals. I used to faint in biology classes as a teen. And I feel dizzy when my kids have nosebleeds, vomit, or get sick. Don’t get me wrong, I still care for my children and will do anything for them. It is just not a preferred area of interest, yet I had to become an expert fast in my illness and how to manage it.

I had two treatments now: five pills once a week. Methotrexate. It is a pharmaceutical drug used in chemotherapy. It is an antimetabolite that interferes with DNA and RNA. Not a kind of medicine, aggressive. The side effects and risks are numerous. It took me a while to agree to the treatment. I was scared and usually did not take medicine unless I had to…I don’t have a pharmacy filled with over-the-counter medication and tons of vitamins and supplements. I am more holistic by nature. I prefer to exercise, nutrition, and mindfulness to care for my body and mind. However, it came a time when I was confronted with western medicine, and to go through my newly diagnosed chronic illness, I had to think and analyze my options seriously.

I sought a second opinion. I sought a naturopath. I read. I asked questions to specialists and patients. I thought. I debated. I looked at my children. I held my grandchild. And I made a decision. However, I also decided to manage my treatment by balancing it with exercise, nutrition, and mindfulness activities. Taking control of my health was essential as I felt powerless. It made it easier to digest both the diagnosis and the pills.

The week before the first treatment, I tried to prepare myself physically and mentally for the “chemo-like” or “chemo-light” treatment I was about to begin. I attended Tae Kwon Do. I breathed. I wrote some poetry, mostly compost. I communicated with my friends as much as possible, held my children, and laughed with my granddaughter as hard as possible. I looked at my roses. I paused. I drank a lot of water. I slept (not well, but I tried). I went to therapy. I complained a lot. I searched for balance. I dreamed of the ocean.

Treatment one, and treatment two, were both right before the Holidays, and treatment three will be right in the midst of it.

According to the Mayo Clinic (2022), here are some side effects to expect. I highlighted mine, experienced only after two treatments.

Black, tarry stools – bleeding gums – blood in the urine or stools – bloody vomit – diarrhea – increased heartbeat – itching, rash, reddening of the skin – joint pain – nausea – pinpoint red spots on the skin – sores in the mouth or lips – stomach pain – swelling of the eyelids, face, lips, hands, feet, or lower legs – swelling or inflammation of the mouth – trouble breathing – unusual bleeding or bruising – vomiting – yellow eyes or skin – back pain – bloody nose – blurred vision – body and muscle pain – burning while urinating – confusion – continuing ringing, buzzing, or other unexplained noise in the ears – cough or hoarseness – cracked, dry, scaly skin – dark urine – dizziness – drowsiness – ear congestion – fever or chills – headache – loss of appetite – loss of hearing – loss of voice – lower back or side pain – painful or difficult urination – pale skin – runny nose – seizures – sneezing – sore throat – stuffy or runny nose – unusual tiredness or weakness – weight loss – white or brownish vaginal discharge – hair loss or thinning – blemishes on the skin – hard, red, swollen skin irritation – pimples .. and there are others.

I was ‘out of order’ and realized that my weeks now run from Mondays to Fridays, and the weekends are reserved for treatment, side effects, rest, mindfulness, family, and friends. I was rushed with a feeling of loneliness in this quest for balance, breathing, and life. I felt at peace with my treatment, yet disconnected from the world and my loved ones. I did not want this to happen. I played games, watched Christmas movies, and spoke to my children. It was not enough. We usually go on adventures, and I miss it. They missed it too. I prayed and meditated that I could get back to activities once I got used to the treatment. I wrote down a preferred list, and the ocean frequently appears in various ways: walk in the sand while the water envelops my feet, watch my children build sandcastles, eat pan bagnats (a French sandwich from Nice) by the shore, hunt for seashells with children, speak to the seagulls who try to steal our food, write in the sand, …So many. Enough to fill many weekends and repeat them, just like a refrain given by the ocean.

 

Awareness of my Toes

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After a rheumatology appointment, I pulled over to a stop somewhere in Mission Hills. It was unfamiliar, but I decided to attend a Musings and Movement event via Zoom. It was time, and I didn’t want to wait until I was at a convenient location; otherwise, I would not attend again. So, I was, parked along an unknown street between my doctor’s office and the freeway home. Slow down, push in the breaks, and stop. Stop. Take a deep breath.

Feet out of their shoes. This sense of freedom is unusual in the car.

I move my toes around as the boundaries of the shoes no longer restrain them.

Nobody sees my toes but me: the big toe and the four other ones.

“They are all different, and they all have personalities,” Gayle says.

Yes, they are all different. With Scleroderma, sometimes they swell like latex balloons about to pop. Sometimes just one or two of them. The stubborn ones. Occasionally they freeze and are cold like popsicles on a hot summer day. Sometimes they are white, purple, or blue. The color shades of my toes vary. I have five toes, like five children—teenagers, free-willed and undisciplined.