On cancer and carnival metaphors

 I really, really meant to write this post yesterday, as it was MARCH 13, officially 2 years since my initial diagnosis, or as many cancer patients like to call, The Official End of the Before Times. Many cancer patients probably have said it better than that, but many use the phrase "the new normal," and I honestly despise that phrase with the fire of a thousand suns, so to each her own. 

OK HERE IS WHAT HAPPENED WITH THE SCAN: It showed that the cancer is stable, and even slightly improved. And while that is FANTASTIC news, it was also confusing, based on my CA-125 number taking that giant leap. The doc says that discrepancy in the number could be a lot of things: cancerous activity too small too be seen yet on a scan (ugh), just a weird glitch because that number does weird glitches (ok). So obviously, we will watch that number, but the two most important things happening are that i feel okay physically, and that the scan shows stability. 

THIS IS ALL GOOD STUFF. it is also exhausting stuff, that emotional roller coaster that is. so. constant. I spent the morning before the doctor phone call wondering, where will the new cancer show up: on my liver, in my lungs, bones, brain? This kind of thinking changes you. You go from worrying if you'll make some freelance deadline to worrying where a deadly cancer will show up next in your body. Wondering if it will be operable, treatable, require surgery or radiation or more chemo. You are that close to the unpleasantness of death virtually every day, and you cannot help but be changed by it. 

Listen, I am grateful for the news of STABLE. After we got off the phone with the dr., we ate big bowls of ice cream and went for a long walk in the sun and laughed even. It was the first day in a really long time that the news wasn't awful, and we felt the load lifting a bit. I let myself feel hopeful again, cautiously, but still... it was kind of lovely.

And then, as is the cancery way,  I soon had something else to deal with. On the CT scan, the radiologist thought she saw something near my neck -- PROBABLY NOT CANCER! but like, maybe a small blood clot or something. So the next day, after I received infusion #5 of the stabilizing drug, i went for an ultrasound to get that checked out. 

Yes it turns out, I have a small "occlusion" in my jugular vein. Which sounds terrifying, but in reality is not as terrifying as it sounds. I will take a few weeks of blood thinners and it should dissipate or dissolve or whatever it is those things do. It is not life-threatening. It is not as hugely serious as it sounds like it should be. But it is another long day in the hospital waiting for test results, it is more medication, something else to keep track of. It's a low arc on aforementioned rollercoaster, but an arc nonetheless. 

I actually detest the rollercoaster metaphor. really, i'm a poet, can i not come up with something better than that? for the moment, no. I will, though. And not merry-go-round, either. Like any of this has anything to do with an amusement park! There is a horror movie idea in there somewhere, but I leave that to your wild, macabre imagination, hehe. 

Today I am okay. Today is still a little bit lighter, literally and figuratively, than many days of last week. Holding steady. 

is the waiting really the hardest part?

 did Tom Petty know someone with cancer? 

well here we are. tomorrow i have a scan that will show if the medication i'm on is working (holding cancer stable) or not (cancer is running rampant throughout my entire body, cancer has spread to virtually all my vital organs, cancer has one new growth and it's tiny, etc.). i honestly can't tell which way i think it will go, because even though the oncologist tells me to "go by how you feel" and i actually feel physically ok, i did not feel super-sick even when initially diagnosed. that doesn't help. 

the biggest struggle today (and many days) is with my thoughts. last year, the chemo i was on worked for about 2 infusions, did nothing on the 3rd, then stopped working for numbers 4, 5, and 6. super-disappointing. 

so now my brain is mostly convinced the same is happening here: the first two infusions of this drug, my tumor marker number was going down. on the 3rd, i think it went up (as implied by oncologist), and i have no idea what happened on the 4th infusion because i refuse to look up the number on my patient record. (i think i've mentioned, focusing on that one number drives me to insane levels of obsession, and the doctor isn't concerned unless there is an upward trend AND something shows on a scan. 

BUT. i can't help it -- my brain wants to find patterns and it thinks it has one here: something works for a few weeks or whatever, then it doesn't. these are totally different drugs, by the way. scary avastin is not technically chemo and it works differently in the body. so it's not equivalent to chemo and i therefore can't really make assumptions. but when has that stopped any cancer patient ever? 

BUT. it's also MARCH. MARCH has historically (as in, the last 2 years, ha) not been a great month for me. in March of 2019, i was initially diagnosed. in March of 2020, recurrence. so i would like this March of 2021 to you know, break the mold or whatever. 

i started the month by getting the first of my COVID vaccine shots, so there's that. and there's some (emphasis on some) semblance of sanity in the White House, so that feels a bit better. so why not get a clean scan, cancer-free, tra la la? or, a stable scan. stable would indicate a better March as well. it is weird what passes for "better" these days. 

so yeah, waiting on scans and appointments, waiting for treatment to work, that is all pretty fucking terrible. But for me right now, it is the thinking part that is doing me in. i hope i can at some point find a way to calm myself, a way that i actually can put to use. i suppose something like that comes with acceptance, though. and even after all this time of living with it, a small part of my brain reserves the right to live in a more pleasant world where none of it ever happened.