good riddance november!!

wow. november was a crazy 30 days. i had good intentions of blogging at least once but for my first month not in “active treatment” there was nothing inactive about it.

medically i: finished radiation, started endocrine/hormone therapy or “maintenance”, fought through 3 weeks of an upper respiratory infection, regenerated the skin affected by radiation, had a PET scan, and two blood draws.

here’s the good news: my scans are reading as “NO EVIDENCE OF ACTIVE DISEASE” (NEAD) which is, in a broad sense, the ultimate goal.

here is what that means in more detail: having had a met to my sacrum means the cancer cells found their way to my blood stream and travelled around, deciding to set up shop down yonder. the treatment i have completed has resolved any masses of cells that were actively dividing and conquering or that were dominant enough to be visible on a scan. so unfortunately, NEAD doesn’t mean cancer is dessimated, gone, never to return, it means now the objective is to prevent the remaining cancerous cells that are floating around from getting ambitious enough to band together and start another takeover AND/OR to be ahead of it when they rally.

here’s the news that makes the good news annoying: the medication i take for maintenance affects me systemically just as chemo did. the medicine doesn’t know a good cell from a bad cell, so it attacks all cells. in the first three weeks of this medicine, my blood counts (white blood cells, neutrophils, and platelets are mainly what we focus on) tanked lower than the lowest they were during chemo, which was a point i didn’t reach until 3.5 months in. i’m not a doctor, i just watch a lot of them on TV, but it would seem logical to me that since there is “no active disease” the medicine has a significantly less amount of bad cells to attack and a whole lot of healthy cells to feast on and therefore, it makes sense why it would hit so hard so quick (i will get curious about this with Dr. Mehrotra next time i see her).

typically the med that does this is cycled 3 weeks on, 1 week off but i am currently finishing my 2nd week off, with the hopes that the counts restore significantly enough to start another cycle this week. so, the reality of this feels very “damned if you do, damned if you don’t”. if i don’t take the medicine, i’m looking at a sooner-than-later recurrence that will put me back on the medicine. if i do take the medicine, i’m poisoning an otherwise healthy body to keep it healthy. since it’s only my first cycle, there can still be dose adjustments and this is what Dr. Chupp would likely call the “art of medicine” because now we dance and play until we figure out the right dose so my quality of life is such that it supports me getting BACK to life instead of having to isolate from it hoping i don’t get an infection my body can’t fight.

if you couldn’t tell, this is all kind of frustrating. it makes it feel awfully challenging to think about how to get on with life when the near future holds a decent bit of “getting used to” and “figuring out”. fortunately, all side effects or symptoms have been manageable and no other interventions have been necessary but if there’s one thing i can help you understand about life “after” treatment, understand this: it’s not as simple as it sounds.

socially/personally/professionally i: finished writing and (with some brilliant editing prompts from my dear Lea) re-wrote an essay for a local publication, finished the application process for disability, started and finished an application for a UX Design program, was the birthing coach for Colleen’s 30+ hour labor and delivery (shout out to baby Ezekiel!!), and cleaned out and re-arranged 3 rooms of our apartment. ooh! and got prosthetic breasts (or, the sexy name for insurance billing: Durable Medical Equipment…. ha)!

between all of this going down in november plus daylight savings time, the rhythm Audrey and i established to start off the school year and daily homework didn’t hold up so well. which reminds me, she sprained her ankle and was on crutches for three days, had another bout of head lice, and also had the same respiratory infection i did in the month. things have been going well between her and i, which could be simply because i don’t have the energy to pick any battles and am just banking on faith that anything that comes from this season and my lackadaisical nature will work itself out in the long run.

this month we are gearing up for this coming weekend in Chicago with family, next weekend we’ve got Audrey’s first cheer competition, and following that, Florida for Christmas!

that’s all for now folks —

H.