The week leading up to Christmas was physically and mentally demanding. I received a treatment infusion, attended three days of radiation treatment, and was beating back the vestiges of a cold that just did not want to fuck off.
On Saturday the 23rd, I found myself in the emergency room due to febrile neutropenia: a fever caused by a lack of a specific type of white blood cell.
Our bodies produce special cells, called neutrophils, which respond to infections and wounds. An absence of these cells—neutropenia—means that our immune system is unable to effectively suppress infections.
Chemotherapy and radiation can both contribute to neutropenia, which is a serious, life-threatening condition, even though it’s often a side effect of treatment.
It’s true. Sometimes the cure does feel worse than the disease.
The staff at the emergency room took good care of me, offering me antibiotics, hydration, and some additional testing to rule out the swath of respiratory infections circulating this winter. They even gave me a chest X-ray to rule out fluid buildup and pneumonia.
No COVID. No RSV. No pneumonia or strep.
Yes to neutropenia.
So, each day—more or less—since the 23rd, I’ve been attending the Malignant Hematology unit for daily testing, watching for my white blood counts to improve.
Finally, just over a week since my neutropenia started, it is over. My immune system has rebounded back to its normal state.
New Year’s Day marked the end of my daily hospital visits.
I’ll do my best to describe my experience with neutropenia but it’s important to be explicit: everyone will have a different experience.
At its worst, neutropenia felt like a combination of symptoms cherry picked from various ailments to ensure maximum misery.
There was the fever itself, which caused chills, hot flashes, disorientation, and a lack of appetite.
Regulating temperature was a problem. Holding conversations was a problem. Hell, even staying awake was a problem. You know: regular fever stuff.
My energy, which is precarious at the best of times, simply evaporated into the ether. What remained was my husk, tethered to my recliner, head bobbing in and out of wakefulness.
I’ve always called this the “dead disco.”
Layered further was the head and muscle ache that often accompanies a nasty flu.
Tightness, soreness, and stiffness do not pair well with pre-existing bone pain. When your muscles are compensating for broken bones already, the result is a nearly immobilizing ache that’s immune to pain medication.
…and, as an additional bonus: you know when you rub your eyes a little too hard and end up seeing the universe because your phosphenes go apeshit and the inside of your eyelids looks like a space-themed screensaver from Windows 95?
Shoutout to the Lovecraftian Great Old Ones. Specifically Hastur, Lord of Interstellar Spaces, for the tour of the universe.
That was standing up. Dizziness, lightheadedness, and seeing spots.
Yet, in spite of all of the physical effects, I think the psychological horror is much worse.
Now I know that no matter how bad I’ve felt before, it can always be worse.
Without exaggeration, when I went into the hospital on Wednesday, I didn’t think they’d let me come home. It was that bad.
Rest and recovery
To write about rest may seem silly. After all, I’m currently not working and mostly choose how I spend my days, but hear me out on this.
In order to have meaningful rest, it’s important to seek out activities that are reinvigorating and that fill your cup.
Today, rest has looked like having a nap and listening to a podcast. It’s included writing this, enjoying a cup of tea, and mindfully sitting with and petting one of my cats.
Lately, rest has been about ensuring that I don’t overexert myself while still maintaining some level of activity. It’s meant turning down some social activities, belaying plans that would take me out into public, and being more judicious in deciding what I undertake.
Sorry, I can’t make it. My spine is broken in a dozen spots and my immune system decided to quit. Nobody wants to work anymore.
My body needs to convalesce so that I’m prepared for chemotherapy next week. This recent neutropenic setback delayed my treatment at a time when I cannot afford it.
As time ticks forward, we need to get some cycles of my latest treatment regimen completed so that we can gauge its effectiveness. As I’ve mentioned before, there are still other treatment options, so it’s critical to ensure that I’m on the right one.
Thanks for reading.
Best wishes for 2024!