Journal entry by Nicki Sebastian —
Time sure does fly when you're aware that it's finite—or however the saying goes.
I've been meaning to sit down and churn out a thorough update, but the last eight weeks following my first round of consolidation chemotherapy have been filled to the brim with simple pleasures (I garden! I drink tea! I take walks!), frequent trips to the UCLA oncology clinic for blood work and monitoring, and a very calculated and much-needed regimen of nutrients, rest and family time in order to continue to rebuild my marrow and immune system so I could head into round two (which is technically my third round of chemo, but round one was labeled Induction, as if I should be honored to be selected to be here) with a strength of body and mind that will carry me to the treatment finish line.
It's now Day 17 of Consolidation Round Two at UCLA Ronald Reagan and I feel like I'm in the midst of my senior spring, albeit a dark and cruel one. I began this journey as a wary freshman, endured indescribable mental and physical battles, learned to care only about my ANC (Absolute Neutrophil Count) because my life quite literally depended on it, and mastered skills that are not applicable anywhere else (examples include: disentangling myself from my IV pole, remembering that Wednesday's soup is chicken tortilla soup and it's damn good, and placing my Ativan under my tongue for faster efficacy). In short, I entered this last round with the overconfidence and passivity of an undergrad waiting to finish her last elective so she can just graduate and move on with life. I even walked in with a new, thick, salt-and-pepper pixie, which is essentially a big Cancer Varsity Jacket that I wore proudly with my matching sweats and Crocs. Little did I know that my diploma wouldn't be spoon fed to me and the cumulative effects of chemo mean that I'm basically operating on a too-full advanced course load in order to walk out of those secure double doors.
After settling in to a light-filled dorm that felt like the upgrade that I had so deserved after already clocking 60+ days in a confined ward, I had myself yet another full-body cry (leaving my girls for a third time was torturous and that's an understatement), then I found my old game face and prepped for a week of chemo to launch a month of pain and uncertainty. The regimen was the same as last time: a cocktail of three drugs specifically formulated to fight my very specific genetic marker permutation. Again, these two consolidation rounds are meant to clear out any leukemia stragglers (even one tiny stem cell can cause total relapse) and essentially take your immune system down to non-existence, after which your marrow slowly dusts itself off and starts creating shiny new (ideally not-flawed) cells. This process takes about a month or longer, and my doctor described it as "getting rid of a few weeds by ripping out your entire yard and planting all new seed as opposed to trying to just pick out the weeds." I describe it as "getting squarely punched in the face until you're nearly unconscious and then being expected to get up and ask for more." Whatever the analogy, these treatment rounds have been a real test of will and strength and every other virtue—but I've learned to take what comes each day, have patience with my body and not fight the nebulous, often frustrating timeline. I'm discharged when my body says I'm good and ready, aka when my ANC is 0.5 (the magic number that doctors deem safe enough to re-enter the germ-infested world, but truth be told, safe feels like an unusable term with the Delta variant at play—but the COVID digression is another post altogether.)
Anyhow, back to the here and now, the equivalent of mile 23 in a marathon. This week, I hit The Wall, and I hit it hard. My prior chemo round at UCLA Santa Monica was fairly uneventful—I was able to somehow skate by without a single fever (which, according to one of my nurses, is akin to seeing a real unicorn), and as such, prided myself on my excellent hygiene and borderline hypochondriasis. I'm a certified control freak, and I fully gained the control (or so I thought). But I've since learned that when you have zero neutrophils and nearly zero white blood cells as a whole (I'm currently at 0.03 total), the naturally occurring bacteria in your own body can actually turn into your worst enemy. You see, those of us with normal amounts of neutrophils are constantly fighting microorganisms that live in our mouth, in our gut and elsewhere, but when you take away the soldiers, no amount of hand-washing can prevent an infection from something that has always resided in our system. Which is precisely what happened a few days ago when I woke up with 103-degree fever and a lethargy I've never known. When this happens to neutropenic patients, the doctors, nurses, technicians and phlebotomists rush in like a NASCAR pit crew. A fever sometimes signifies infection, and an infection in this state is life-threatening if not identified and treated quickly. While the scene was alarming to say the least, I've never been more grateful for and in awe of modern medicine and my safety net of doctors and nurses here at UCLA. Blood cultures were gathered, chest x-rays were taken, urine samples were procured, IV antibiotics were administered within the hour, and results were back from the lab shortly after. Turns out it was Gram-positive cocci, specifically Streptococcus A in my bloodstream, aka Strep A, a common bacteria in our mouths, but dangerous when found in the blood of an immunocompromised patient. The drug regimen cleared it in a few days and an echocardiogram showed no signs of any infection in my heart. All in all, a scary 72 hours, but until this whole debacle unfolded, I don't think I fully understood the gravity of my current state of neutropenia (and why I have to remain in a highly sterile hospital room for weeks on end).
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