Logistics.

Full pathology came back from MD Anderson in Texas today verifying my original diagnosis in all its raunchy stank. This is a good thing. This means there are no surprises; the treatment plan stands. As my oncologist and the onlooking PA student read it back to me, my brain excused itself politely and started singing the lyrics to Tom Petty’s “You Don’t Know How It Feels” instead. I don’t want to hear it. Diving into the peculiarities of my diagnosis, the stage I’m in, it changes nothing. I know myself. If the prognosis says 25% chance I will fixate on it, squeezing out space otherwise used for things like sleep and laughter. Some words slip in like “rare”, “aggressive”, “chaotic” and the involuntary waves of terror move through me. I feel the exact way standing on the edge of a cliff; noodle legs, palm sweats, energy turning my blood cold. Please, Mr. Petty, I’m gonna need you to take me on that moonlight ride now pleeeese!

We cover blood tests, symptom management, dates for a PET scan and for the next appointment before the next hospital visit. Overall, it’s a positive visit marked with as-expected blood tests and no surprises. Speaking of super blood, the math works out between 10-15 times in July that I will be poked for a blood draw. Right?! Evan and I pour over the blood graphs like nerdy vampires, getting hyped like “Ohhhh, check out my lymphocytes getting their shit together” then high-fiving over normal platelets counts with the enthusiasm we used to bring to the new Kurt Vile album dropping. After we high five we always wash our hands because the queen bee Neutrophil % is not playing. Bitch crazy.

This, on repeat.

Our once carefree life of coming and going has now become hyper-present. How I feel at any moment, literally minute by minute, swings drastically. That is a story for another day. Today, the update first and now walking you through a chemotherapy “cycle”. Keep in mind, every c-bag requires something a little different. For me, the “rare” and “aggressive” nature of c-bag means cycles that look like this:

Hayley’s C-Bag 21-day Cycle:

Day 1: A blood test to ensure I’m well enough to get poisoned. Check-in with my many overnight bags to the hospital. I will not breathe outside air for 5 days. Port accessed (aka big needle through the chest), hooked up to chemo drug #1 that immediately gives me the flu which I’ll have for the next 5 hours. Evan rubs my feet a lot and I watch Tik Tok to keep from getting bummed about it.

Day 2-5: In the hospital room with an occasional .48 mile lap around the ward which we keep track of on the whiteboard under “mega loops”. Our goal is to get 50 miles in the next 6 cycles since I wasn’t able to run the SOB 50-miler. The hospital experience, also a story for another day but I’ll say the nurses are never not awesome and I fucking hate it there.

Day 6: Once chemo is done, they let me go home. I will cry in relief the minute I step outside the hospital and spend the day touching plants and cats. The neighbors surely think I’m on psychedelics. The bald thing is already throwing them off. This brings me more joy.

Day 7: An immune booster shot that hurts like hell but will give me wings the following 24-hours. By wings I mean I can get off the couch to go to the bathroom without assistance. Huzzah!

Day 8-11: Home. Much like a 3-year-old, I am unpredictable. I’m coming off the insane amount of steroids that are part of my treatment plan AND that nasty ass poison is leaving my body so I’m needy, cranky, can’t open things, have to flush the toilet twice because, well, poison and Evan just posts up to serve. #SaintEvan

Day 12: Follow-up doc appointment like I had today.

Day 13-14: Home. Get wave two of the chemo burn, Netflix & chill days.

Day 15: Time for chemo in my spine, ya’ll! Pew pew pew pew! Yes, it’s as fun as it sounds. This is precautionary as my c-bag likes to weasel its way into the central nervous system, so I spend 3 hours in the hospital giving blood then having a radiologist team Frankenstein monster me on a table to drain spinal fluid then push chemo in. Lots of needles involved. To pass the time, I like to brainstorm with the PA back-related songs for the occasion (e.g. Back in Black, Baby Come Back, Back..street’s Back, ALL RIGHT!) I have to lay on my back for hours afterward at home to avoid headaches. I will still get headaches.

Day 16-19: Headaches. They go away if I lay down so I am laying down almost the whole day. We’re working on ways to improve this so fingers crossed.

Day 20 - 21: I feel great like old Hayley! Let’s eat tacos, talk about our feelings, and get the H.E. double hockey sticks out of the house.

Cycle complete. Back up to the top.

We will do this anywhere from 4 - 11 more times. It’s…a lot, I know. BUT there is so much between these lines that are wonderful, and that is what you will hear about each day.

How are you doing today Hayley? Today was a good day, thank you for asking.

The pond outside the clinic where Evan and I wait between blood tests and seeing the oncologist.