Day -6, Wednesday

Photo of the Day: Today I started Chemo. And once again, I stood up for myself against GATA2

I’m not sure how long this post will be – it was a surprisingly involved day, and I’m tired. Officially, I started chemotherapy today. There was a 2-drug cocktail (nope, not the “fun” cocktail, but the kind that hoovers your bone marrow and makes you go bald) – of Busulfan and something else. Pardon me for forgetting the name – I’ll see if I can get it by the end of the post. Or just tomorrow, because I’ll be on the same stuff. Again.

I woke up to fog and mist. It was beautiful.

Pre 10 am Chemo, I showered, carefully with my wrapped and water-proofed central line. Personally between you and me, I’m considering in “water-resistant”, but there you go. It still wigs me out, having a direct line into my heart.I also washed my hair and used the LEAST amount of shampoo ever. Seriously, penny sized splat on my palm. Little hair = minuscule shampoo. Didn’t even bother with the conditioner. And then I shaved my legs, likely for the last time in a while. No love lost there either. Side note, once I become neutropenic, I’ll have to be super careful with cuts and stay far away from razors, even the super body friendly ones. For those of you who know me, I am a clutz and will likely injure myself in some way. Somewhere my nurses are just shaking their heads.

Pre-chemo, I had what’s becoming my normal anti-viral, anti-nausea, steroid and anti-seizure medication. I also gave myself a shot of blood thinner, Lovonox. Being hooked up to the IV Pole was actually really anti-climactic, but I watched with interest as my nurse Elaine had a second nurse, Sarah, verify that I was being given the appropriate chemo.

Verifying that everything is A-OK. After they removed the anti viral and steroid drip, I joked that now was not the time to open a Twitter account and start tweeting. Thankfully they laughed and didn’t kick me out of the room

And then – it was just a matter of being infused. 40 minutes on one drug, 4 hours on the Busulfan. At the time, I tolerated it well – no issues insofar as I could tell. I’ve been told that it will likely start making me feel “blah” and “meh” in another day or two. Writing this currently – 9:30 pm – I’ve got a headache. But that could be any number of other things.

Standing up to Chemo, my photo of the day. I was actually chilly in my room, so I wore a comfy hat, donned hiking pants and a sweatshirt that Dr. Hickstein joked, “did you need to hike to Durango to get that?” I answered yes – but he already knows that I did. This was a big day – once this is started, there’s no going back.

After Chemo, I had blood draws for 4 hours, testing my body’s metabolization of the drug. And I was also visited by A LOT of people – including Dr. Hickstein and Dr. P——— aka Dr. Acupuncture. He’s really cool, from Croatia and we talked Eastern Europe and travel for a bit. I like his sense of humor. He approves of my acupuncture. I think we’ll make a good fit.

Dr. Garcia and CNP Danielle. These are some of the rockstars of my transplant team who have helped me reach this point. We were joking around and they were great with me taking their photo. We were happy because we were talking MSNBC and Rachel and Brian on the evening lineup. We laughed, and it was nice to talk about something non-transplant. These are very thoughtful, kind people whom I am so fortunate to work with – I will forever be grateful. And think of them when I turn on MSNBC & Rachel.

The final part of the clinical day was meeting with an Occupational Therapy specialist whose focus was on Lymphedema. Likely, my lymphocytes were damaged while in formation in my bone marrow due to my GATA2 mutation – and while my 2010 DVT blew out the valves in my right leg from ankle to hip, fluid retention has been something I’ve battled most of my life. Even in my early teens, I would get out of school to play soccer or run, and my shins would always be tight with a build up of fluid.

Good to know.

My OT Specialist was called in to consult and help. It’s important for my team to have a hold on this now – while my swelling is “just” sausage toes” and “cankles”, before it potentially becomes something much more challenging to manage. My foot, ankle, and legs from ankle to knee were measured in seven different places and compared, and there was a difference between the two. I was given a few different pairs of compression socks to wear during the day, and at night – in my right leg which is larger than the left – I’m supposed to wear a nylon sock with am ace bandage-like wrap This promotes continued flow of lymphatic fluid, so if the nice expert lady recommends it, I’m game.

Dealing with my lymphedema, in what I now know is GATA2 related, gives me so much peace. It was the same with finding out about my plantar warts – that none of this is my fault, rather, a function of my body dealing with my GATA2. I teared up in front of the OT person – she was so understanding. I didn’t feel ashamed at all, even though one leg is slightly larger and a more red color than the other. I wish that I could go back and give my younger self a hug, some grace to make her feel better. Illness is so cruel and no one is immune. All I can do is my best to stay as healthy and strong as I can, while also treating myself with compassion and kindness.

I also mentioned that I was going to order a yoga mat, a kettle bell and Christmas Lights – she was great and we finished our conversation while I was getting ready to go for my walk around the clinical center. I may have climbed 14 flights of stairs a few times – what can I say, I was still feeling OK. And then walked around the 7th floor atrium for a bit while speaking with my folks, Lucy and Andy. And as I returned to my room, there was a brand new yoga mat on my bed. I cried because it was such a thoughtful thing to do by someone who took the time to listen and to help.

I’m grateful to be here on this day, Day -6.

  1. God bless the ones who listen❤️ Your OT is another person of magic on your team. What a nice surprise to find on your bed – kinda like we’d do treasure hunts once in a while after you practiced violin! I admire you so much – your spirit in this struggle
    is beyond anything one could hope for!


  2. Wow! This post certainly reveals a lot about your team members and an equal amount about you: your graciousness and sense of gratitude come through in every paragraph. I’ll be thinking of you in these days as you count down to the actual transplant.


  3. I asked Kurt about you at the gym this morning and he shared your blog with me!! I just read all of it….. I had no idea about any of this when we worked our together at HEW!! You are a strong person and I will be praying for you every day!!


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