October 2017
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I’ll Be the Cancer Mom

for Brooklyn Paper
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I’m lying next to my beautiful, sweet daughter trying to comfort her as she flips and turns in a fitful, uncomfortable sleep after a day of chemotherapy. She tries hard not to fully wake up because that will bring on the debilitating nausea. I will her to stay asleep because she is just too sad to be awake tonight. I’m a cancer mom.

Our world changed unexpectedly and immediately six months ago with her diagnosis. We entered a frightening and shocking world of hospitals, infusions centers, chemotherapy, side effects – a world of cancer and all its insult and pain made all the worse because it was happening to our 16-year-old daughter. I never thought this would happen in a million years. I buy organic food, supply her with sulfate and paraben free shampoo, make her wear sunscreen. I do the right things. To me, yes, sure it could happen. Between mammograms, Pap smears and skin checks, cancer is always something I feel might be lurking. But to our daughter? No, never.

A Persistent Cough

I thought she had pneumonia. That surely was what was causing her persistent cough and miserable demeanor. I insisted on a chest X-ray to prove me right, but the pediatrician heard nothing in her lungs and saw no clinical symptoms to convince her to expose my daughter to the radiation of an X-ray. It was her allergist that saw the swollen lymph node and sent us straight to the radiologist. I didn’t know at the time that the lymph node was a signal to him, I was just grateful that someone was seeing things my way. Two hours later as I’m going to pick up the umpteenth supply of cough and allergy medicine as well as inhalers to open her airways, I get a call from the pediatrician. “I don’t want you to freak out while you are driving, but you need to pick her up right now from school and go straight to the ER. It looks like she might have lymphoma.” She had a mass in her chest pressing on her trachea causing the cough. It was never pneumonia.

Our New Reality

Five days of tests, biopsies and doctor after doctor marked the most frightening and uncertain time of our lives. The doctors knew it was lymphoma, they just didn’t know yet how bad or how far along it had spread in her body. Days and nights blended with nursing shift changes, trading places with my husband as we each drove home quickly to shower and see our son who was home on college break, and then rush back. Uncontrollable sobbing in my car on the trips back and forth is mostly what I remember of those first days. We didn’t know if this was curable. We didn’t know what it would mean for this little girl who innocently lay in the hospital worrying that she wasn’t studying for midterms and couldn’t go to play practice. Finally, the results came back. The doctors explained that it was good news. Hodgkin’s lymphoma stage 2. The disease was only located in her neck and chest and had not progressed throughout her lymph system into her marrow or her brain. This is good. She would be cured. She will live. She will thrive. She started chemotherapy the next day and has received treatment since then every other week for six months.

The first treatment of chemotherapy cured the cough. It was a huge relief to have that gone, but after that, the chemo has brought on so much insult to the original injury.

Now I understand what people mean when they say that “she battled cancer,” or she is a “warrior.” It’s a fight. It’s a fight to stay positive, to keep living, to stay strong, to keep being yourself. For a teenager, it’s an unfair fight. She’s already battling high school pressure, friend drama, college board exams, relentless homework. Now she battles nausea, hair loss, exhaustion, weight loss, loss of appetite, immunity suppression, nightly injections to stimulate white blood cell production, trips to the ER if her temperature goes above 100.4, fear, anxiety.

We have worked hard to try and help her just be a 16-year-old and a junior in high school. She sees friends when she’s well, she performed in her school production of The Tempest, she goes to Broadway shows (we get her an aisle seat so she doesn’t have to be next to a stranger and their germs). We move forward, to do anything otherwise is not an option. We make sure she gets in one activity a day, maybe a play rehearsal, a driving lesson, a meeting with one of her teachers; we watch 30 Rock and laugh; we homeschool; we visit colleges; we go to the movies. We constantly wash our hands and wipe down public surfaces with sanitizing cloths, and we keep going.

Gratitude

I am grateful to everyone who has been here for us with homemade dinners, daily calls and texts from family, spontaneous walks and visits from friends, teachers who tutor after their own school days are over, hugs and advice from our cancer support group Soul Ryeders, doctors who act with decisive care, and warmth from our chemo nurse Katie who is unfailingly sweet and understanding and gossips with our daughter about the TV shows and characters they both love.

My daughter grimaces as she shifts again in bed to try and find a position that’s comfortable and staves off the nausea. I stroke her forehead and whisper that she’ll feel better in a few hours. She’ll be laughing with her brother by tonight when the medications wear off. She gives me a little smile, pulls the blanket over her head and turns over. I believe that with time this will just be a blip for her, a bad memory. I can’t wait for that. I can’t wait until she is healthy and doing things she loves and enjoying every bit of her wonderful life. She is a warrior. I’ll be the cancer mom but there is no way that I will let her be defined by this. She has too much life to live.

Corinne Zola is a founder of the Westchester Children’s Museum and a former President and current member of the Board of Directors of the Museum. She lives in Westchester with her husband, her daughter, her son (when he’s home on break from college) and Penny, their dog.

Resources

These organizations have been extremely helpful in our family’s journey with Hodgkin’s Lymphoma.

• Leukemia and Lymphoma Societylls.org – the national organization has an active Westchester chapter providing a wide range of information and support for patients and caregivers, including one-on-one counseling; peer-to-peer online chats with young adults living with Leukemia, Lymphoma or Myeloma.

• SOUL RYEDERS®soulryeders.org – a volunteer-driven charitable organization based in Westchester County, offering compassion, emotional support, as well as fitness, nutrition, and educational programs for people affected by all types of cancer in our community. Soul Ryeders will be available to you from diagnosis through treatment, and recovery through survivorship. Their kindness and generosity with their expertise and time was indispensable.

• The Wig Exchangethewigexchange.org/ny – The primary mission of the organization is to provide women, including teens, undergoing chemotherapy with high quality wigs and hair pieces, as well as practical tips and emotional support for managing the issues related to medically-induced hair loss. You will be assigned a Wig Exchange advisor, a cancer survivor herself, who will help you choose a hair piece and is generous with hugs and warm advice.

Posted 12:00 am, October 9, 2017
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