Day -5, Thursday

It was a long day and I’m beat. Perhaps I can blame the chemo – I discovered it’s a cocktail of Busulfan and Fludarabine they are pumping me full of. Every time I see the “chemo bucket” I still think it’s the spot to toss my cookies, should the need arise. That being said, in addition to the chemo, I’m given about 10 drugs that include IV anti nausea and IV anti seizure, injectable blood thinner, anti-virals, anti-nausea and anti-seizure pills. And then my nurses dress in their hazmat suits and it’s just a lot.

Overnight, I wrapped my right leg, in effort to reduce the lymphedema. You can still see where the localized swelling is in my right leg. I hate that I have this, but it is what it is. I’m just managing it like so many others are. The wrap helps, as do the graduated compression socks throughout the day. Behold, the Before & the After:

Later, I had a very nice Messenger Date with Andy, and then a FaceTime date with Lucy and Julie. They got to meet a lot of my nurses, and see the general craziness of my morning. At one point Lucy remarked, “Does it ever stop?” (She meant with the people walking through my door).

“Nope.” I replied.

Thankfully I had preemptively eaten breakfast and even more important, had my coffee.

After my 9:30 IV Drip of meds, I was rushed up to OP9, where I did some respiratory therapy that involved breathing an infusion of Pentamidine, which will helpfully prevent me from contracting a serious type of pneumonia while undergoing Transplant. I feel proud wearing my RESIST hat, in honor of the Women’s Mvt.

After that, it was 4 hours of Chemo. Drip drip drip.

During my chemo, I met with Jennifer, my incredible social worker who inspired me to go into the field. Thankfully my Plan B backup of an iPhone worked like a charm in opening Microsoft Teams, so through some festival miracle, I was on time to our 1 pm, even managing to call in a lunch order just in time. THAT is success!

As always, it was a great meeting that ended at 2, and then I went to eat lunch, but….Rec Therapy came in….and just as they were leaving….another doctor who worked with my lovely PT/Lymphedema doc, Leora, came in. And then, in spite of my effort to quickly set up a lunch and viewing of the Great British Baking Show (literally, I had JUST removed the cover from my salmon, and pressed “play” on Netlix), another doctor came in.

Realizing that I was not going to eat, or watch my show, I paused Netflix and took one shot with my camera. And then I gave her my unedevided attention, like I had been with everyone else throughout the day. I was tired, hangry, and just wanted to be alone for a few minutes. I was happy to be wearing a mask and hat.

It’s a shame, I don’t really even remember what she was saying. I was aware of my chemo finishing up, and my food getting cold. There was also some hanger in there. And wondering what the “chocolate” challenge was going to be. It was just a moment where I really wanted some time alone after talking all day with other folks – and I had just uncovered my lunch and started my show – when someone, who undoubtedly wanted to meet me and do good, walked into the room.

I’m winning by being here, I really am. But today I had a few difficult moments as well. The good doc didn’t stay long and then my lovely nurse Elaine and Junga came in to unhook me from the chemo. And then, seeing the look on my face and knowing how many people visited my room, Elaine kicked me out.

“Go for a walk, go outside in the courtyard. Have your zoom meeting outside. I don’t want to see you until you’re done and then we’ll change your dressing.”

I could have hugged her, but, you know, COVID.

So I power walked up the stairs and around the floors above the atrium, ascending and descending, doing what I could to MOVE and get my heart beating and lungs pumping. Rounding the turn back onto 3NE, I kept my head down, powered into my room, grabbing my laptop and retreating just as fast as I could. By 4:02, I was logged into my zoom call and seated next to some lovely plants in the outside courtyard. And for 90 minutes, I got to be with good people that I know from Asheville. It was lovely.

My evening was another blur. I had my Central Line dressing changed, as it got wet in my post-Busulfan shower (yes, my Team wants me to shower after taking this especially hardcore chemo drug). So Elaine worked on that, while Junga removed the IV from my arm. At some point, someone shoved a phone in my ear and I ordered dinner with about 3 minutes to spare. Dressing was changed, dinner was in – all was well.

On a deeper note, I need to do better at taking time for myself. My hospitalization as a kid in Czechoslovakia really traumatized me – I was so fearful of adults not understanding me (even though I spoke fluent Czech), and therefore not helping me. I was afraid of dying.

To a certain extent, that mentality has stuck with me as an adult. I tend to go out of my way to accommodate medical professionals, even if it means I don’t complain or I wait a long time for appointments, or I fail to set my own boundaries. Generally, I try to be a kind, empathetic and generally good natured person – likable, if you may. And I don’t want to change that – I really don’t.

But I do want to figure out how to save time for myself, in all of this transplant-ness. If I’m needing lunch, a break, or even a time out, I want to know how to assert and respect myself in a clear way that is not hurtful to others. And maybe that’s just another really cool thing that will come about as a result of this transplant. I can figure this shit out.

Congratulations again if you’ve made it to the end of this post. My evening anti-seizure and anti-nausea meds are just taking effect. I’m not even going to bother with the debate; Harry Potter is calling my name. So too is the rice crispy treat I saved. And my bed, yep, that too. Here’s to surviving the day, Day -5.