The next three months were busy, but I was enjoying my dive back into a job that required my full attention, all the time. I was able to work my regular 8-hour days without fatigue, and I often stayed late to help out. The COVID variant was amping up overseas, but I paid little attention to it since I continued to wear a mask everywhere I went, but as June turned into July and then August, COVID spikes were becoming the hot news topic once again.
So I asked my oncologist if he'd order a blood test to determine if I'd made any antibodies to the vaccine I'd received in May in order for me to safely return to work.
A few days later it was revealed that I hadn't. I was completely unprotected as I continued to work as a nurse in an Assisted Living facility, the hottest-hit population.
But I still wasn't worried since the virus was "out there" somewhere, not in our building that had never seen a positive COVID test since the pandemic began.
That all changed when I received a call a week after my negative antibody test, that I'd been exposed to someone who had tested COVID-positive. I didn't think much about it; after all, my interaction with him was brief and we were both wearing masks.
But I woke up the next morning in a panic. The reality that I'd been exposed to COVID finally hit me twelve hours later. I was an immunocompromised woman who was only six months out from the groundbreaking treatment that put me back into remission this past February. It was designed to wipe out my cancer-carrying B cells, but it also may have wiped out a fair amount of healthy B cells--the very cells that carry antibodies.
The treatment also rendered me defenseless against the typical childhood diseases like measles, mumps and rubella, along with Hepatits A/B and Influenza B. I've been raw and exposed all this time, but because I'd also been feeling so well, I never felt the enormity of it.
I texted my boss that weekend to inform her that I was not comfortable returning to work until I spoke with my oncologists, and once I did early the following week, it was clear that my concerns were valid. Until the pandemic slowed down, or I made antibodies to the vaccine, or my immune system caught up, another leave from work was necessary.
I wasn't happy about this since I'd been so happy returning nearly three months earlier, but I was also not comfortable surviving two bouts of cancer in three years, only to be taken by COVID.
It was time to be a fierce advocate for my health again, especially because my situation is unprecedented. Having to navigate immunosuppression is one thing, but having to do it in conjunction with COVID is too scary. And again, it's hard to remember that because I feel so well, especially since I have only a few side effects from my treatments: neuropathy in my hands and feet; and throwing up every 2-3 weeks. The former has been around since 2018, though it worsened with CAR-T, but it' still manageable.
The throwing up? I'm convinced it's a weird byproduct of having my T-cells genetically modified. My oncologists cannot explain it with any confidence but it's obvious to me since it began the afternoon my T-cells were reinfused into my body. At first I explained it away as an isolated event from the stress of the moment, but it has continued every 2-3 weeks for 7 months without fail and without any link to food or drink ingested. The Facebook group I belong to has been an invaluable source of information from CAR-T recipients from all over the world, and many have cited their own cases of emesis without cause.
My oncologist has to do her due diligence and figure out why I'm throwing up, so an appointment has been made with a GI specialist for next month. Frankly, I think it's a waste of time. Throwing up monthly is not something that had been happening before my treatment; in fact, I rarely threw up as a child and don't recall throwing up since I was 12 (outside of 3 pregnancies).
But I digress.
The point is, I feel back to my-old self before the exhaustion and fainting spells were triggered by treatments in February. But I must remember that my immune system is not back to normal...yet. It is still in healing-mode, even though my monthly bloodwork continues to look great, with only a few values on the low side of normal or just below normal. But the tests that measure immunity have not all been normal, and even though that has been expected post-CAR-T, it is still jarring, especially in light of a pandemic.
My Immunoglobulins, or antibodies, have been tested every few months and my latest reading shows that I am off-the-charts low on IgA--antibodies that are found in mucosal linings that make up the gut and lungs. Which means that I am highly susceptible to any gut issues (that may explain why I've been throwing up), and to lung issues, like the common cold, the flu, pneumonia, or COVID.
The value is also lower than it was the last time it was checked, and so is my IgG, which make up about 70-80% of the immunoglobulins in blood. IgG antibodies are produced during an initial infection, then create long-term protection against further infection. In those with a normal immune system, sufficient IgG is produced to prevent re-infection, but in those who are immunocompromised, insufficient IgG renders people like me highly susceptible to infections of any kind.
In order to avoid possible IVIG infusions (antibodies donated by others) to boost my own lagging antibodies, I was told that my IgG levels need to stay above 400. A few months ago they were 600 and last week they were 513, but the normal range is 586-1602.
And those not-yet-normal values are why I must be vigilant about my exposure to others, especially in my work environment. My defenses for fighting COVID (or any other virus/bacteria) are deplete right now, no matter how great I'm feeling or how well I look.
Sadly, I feel more vulnerable this year than I did a year ago when I was undergoing chemotherapy, but a friend reminded me that a year ago I still had an intact immune system.
Oh yeah, that.
I had five vaccinations last week that I'd already received as a child--two for hepatitis A/B; one for pneumonia; a Tdap (normally done in infancy); and an influenza B vaccine. I cannot receive the MMR (measles, mumps, rubella) until I'm 18 months out from CAR-T, so I am steadfast about having only-masked interactions with everyone, including my grandson who just started Kindergarten, since most children are walking petri dishes.
I've resumed my walking schedule, but this time with a mask. I used to think that was over-kill since I'm outside, but knowing how lackluster my antibodies are and how crippled my immune system, I'm not taking any chances.
This crucial time off will allow my immune system to heal, just like I gave my vascular system time and space to heal when my blood pressure crashed and I kept nearly-fainting on the heels of CAR-T. The symptoms were more obvious then, but paying attention to the needs of my immune system is just as critical.
So while I'm sad about having to be out of work once again and resume my hermit-ways, I'm grateful that I have a savvy medical team who continues to look out for my health, and a supportive work place that has been willing to ride the highs and lows of cancer with me.
As always, I am beyond grateful.