I sat in the French Urgent Care, tears streaming down my face, thinking “Not again. How can I live my life this way?”
I was three days into a nearly three-week vacation and already sick. My husband was also sick — except his cold really acted like a cold and was gone in 3 days. Mine … well I’m writing this 22 days later, still on antibiotics (a second round, new strain), hooked up to a high-dose IV of Vitamin C, fatigued, congested, and nowhere near healed.
This is life with chronic neutropenia (low white blood count), a direct result of the chemotherapy and radiation I underwent three years ago. My team of doctors has not been able to figure out why my white blood count never recovered (“We nuked your bone marrow with chemo” is often the response I get, but in more doctor speak). But living with neutropenia is not fun at all.
Ironically, during Covid I almost never got sick — I was so terrified of catching the virus with no immune system, that I stayed in my little bubble, always wore an N95, and made everyone who came into contact with me take a rapid test. When I did travel, in an N95, everyone was masked.
But we can’t stay in bubbles forever, I tried returning to work in 2022 — within two days two people from my writing cohort had Covid and we were all sent home. My anxiety skyrocketed. Suddenly, being around people was dangerous. No more masks, no more bubbles. I ended up with strep throat nearly 3 times in 6 months, plus a couple of colds that lasted four (4) weeks each time. In a way, my year of working turned into a year of teetering on the edge of health at all times. It was exhausting.
My immune system is so low that if I get stressed enough — I’ll break out into shingles (really not fun, especially when they’re on your face). If I exercise too hard, I catch a cold. A rhinovirus can morph into bronchitis. Maybe pneumonia. I get flu vaccines, Covid vaccines, mask everywhere, take a million supplements, infuse high-dose IVC, ozone, you name it. For me, or any neutropenic cancer patient, it’s not just about Covid, we can’t catch ANYTHING … or else.
One time I went to the ER with a neutropenic fever and everyone freaked out. Fever indicates infection and an unknown source of infection can be deadly for us.
Many cancer patients know this feeling all too well — sometimes it’s like living in a world of landmines … I’m still not allowed to get my nails done or see a dentist because the risk of infection is too high. I’m also not supposed to eat sushi, but I can’t seem to quit that one.
You might be thinking, surely medical science has a way to “grow” white blood cells. Yes, we do. And when you go through chemotherapy they inject you with a medicine called Pegfilgrastim (Neulasta is a brand name), which stimulates the growth of WBCs. It’s very painful, you can feel your bones hurting and it exhausts you.
Good news: It can keep your blood counts high during treatment, but the effects are short-lived, about 14 days. Not so good: You have to keep receiving injections and the downside to that is it can CAUSE ACUTE MYELOID LEUKEMIA. I received SIX injections during chemo, so it’s not really an option now (and I get to have yearly bone marrow biopsies as a result).
Of course, I am alive. That’s what it all comes down to, I survived the cancer that statistically speaking was meant to kill me. I am SO thankful to be alive … but I miss hot yoga classes, I miss parties, I miss eating indoors, and traveling without ending up in urgent care. In these times, these seem like first-world problems, but at times it’s depressing. I’ve lost social connections, often feel isolated from the world, or have so much anxiety in a group event I’m not all that fun. I also hate being a Debbie Downer — you know the person always saying things like “Is it outside? Is everyone Covid free? Is anyone sick? Why are you coughing?”
From the outside I look fine, neutropenia is a hidden disability, but it’s one that haunts me. It’s hard to leave cancer behind when the side effects follow everywhere you go.
I often feel lost, thinking about what I can and can’t do. How do I live in this body that is at risk every time it gets near another person? I can’t go to gyms or movie theatres, dance in clubs, or attend Christmas parties. I can count on one hand how many times I’ve been indoors (in public spaces) without a mask in the last 3.5 years. Just when I think, “No, I’m gonna live my life” and take a risk to fly across the world … I find myself crying in a Nicoise urgent care and googling the term for neutropenia in French. It’s neutropénique for the curious. And all I can say is je suis fatiguée.
Hi, I’m Taryn. I was diagnosed with high-grade small cell neuroendocrine cancer in 2019. I underwent a radical hysterectomy, chemotherapy, radiation and brachytherapy before starting high-dose IVC, mistletoe and ozone treatments. I’m a big advocate of combining standard cancer treatment with holistic, integrative treatments that include diet changes, acupunture, supplements and others. My IG and Tiktok are[@] TheAnticancerlife.