Day -4, Friday

It’s late and I’ve wound down, mostly from my day. Round 3 of chemo is in the books and I’ve (mostly) tolerated it well. I’ve got a bit of reflux and chicken – especially dried out – tastes like sawdust. The nausea is just below the surface, but as heavily medicated as I am, it’s still in check.

Something else really fascinating about my chemo, the Busulfan (drug) especially, is that my Team wants me to shower EVERY EVENING after receiving my daily 4-hour dose. No argument on this end, folks. What then transpires is one of my super nice nurses wraps my Central Line in water proof plastic and then I apply way too much tape over my right pectoral muscle up and over my clavicle and around my shoulder. I would take a picture, but it’s not PG, more R, depending on if I manage to cover my boob in tape. Yeah, and that was a lot of information that no one really wanted to know.

Essentially, it’s imperative that I keep my Central Line dry. Tonight was a treat and I washed my hair – so far it hasn’t really fallen out more than usual. I’ve been told it’s usually 10-11 days post-Chemo start, so I’ve got another week to let this haircut grow on me. Or not – because the end will be the same.

Overall, my day was good. It started with a 75 minute walk up around the 7th floor atrium overlook. I was gassed going up the stairs – something my nurse practitioner Tanya mentioned would be normal, given how many anti-seizure and anti-nausea meds I was on. “Stairs…?” She looked at me and shook her head. “Stick to flats.”

So the 7th floor it was. I listened to NPR’s political podcast and Up First Morning Edition, and then switched to upbeat music on my phone. It was nice to observe the NIH Clinical Center coming alive from the 7th floor.

Then it was time for pre-chemo meds and my 3rd round of Chemo:

And, once you’re hooked up for 4 hours, how does one go to the bathroom?

Somewhere in the middle of my 4-hour chemo, I became really tired. I’ve been a low-40s resting heart rate kinda gal over the past day or two, and it just wore on my. I grabbed my blanket, stuffed the little hair that I’ve got left under my hat, and kept good company with Whiskers. The Sleep Stories from my Calm App did the trick and within minutes, I was sound asleep, the low ticks and hums of my Infusion machine continuously feeding my veins the cocktail of choice.

Although, I did need to fix it once when some air got in the tubing. This wasn’t the first time, and I managed to solve the issue myself, having watched Elaine train Junga on how to do it. And before anyone could be alerted, I was back asleep. Again.

Tomorrow is my last round of pre-transplant Chemo! It’s surreal that we are counting down this close. When I asked my team if there was a celebration, Elaine said, “yes!” But that was it. I didn’t press it. I also suspect that I’ll have a partner-in-crime for my f*@^ing jigsaw puzzle. But enough for now. The latest episode of the Great British Baking Show calls my name, if I can stay awake.

Thank you all for your support, kind comments, and reaching out to me. This is hard, and I know it will get incredibly more difficult as they days go by. I am appreciative of each and every one of you.

Love, Marit