“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.

My heart, my beats, my song

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I walk in a dirty hallway. I wonder why I have bottom healthcare services, not the worst, but not the best. I cannot choose who looks at my heart or what keeps me alive. I have to go where my insurance sends me. My heart squeezes, and I check in.

I sit in the waiting room, listening to the music within and hearing the drums calling my name. I close my eyes and smell the perfume of another patient who just walked in. It distracts me, and I cannot hear my song—confusion of the senses.

My name. I hear my name in the background. It is my turn to walk into a small room and expose my body and breasts for an EKG. Stickers, cords, and music notes are printed—my heart’s composition.

I wait not for a cardiologist but for a PA to talk to me. I am nobody, so I don’t get to speak to a cardiologist. It is my heart, the song of life. How long will my music last? Why can’t I choose the musicians in my heart orchestra who will help me create the best performance? It is my heart, after all.

I have no control. So, I wait.

“There is an abnormality with your heart. We will order more tests: an ultrasound and a stress test. Happy Holidays!” the PA said. Since when are heart tests in the same dialogue as “Happy Holidays?” The term is just used as words with no meaning, just as “hello,” “good morning,” and “how are you?” Not many people pay attention to what they say and when.

The P.A. places her stethoscope on my chest, “breathe,” she says. And, again, “breathe.” She adds, “take one deep breath!” She pauses for a moment and walks toward the corner of the room. “I can hear a slight murmur. We just need to know where it comes from.”

I guess my song has a murmur, another music playing in the background.

My lungs have a minor problem being investigated, and my heart has a murmur being investigated. Scleroderma might have started to affect my organs. Or is it something else? My life is changing regardless.

I close my eyes and depict my hands on the drums. Music. Notes. I need music.