Day +17, Friday

Photo of the Day: Recreation Therapy (yes, such a wonderful thing exists!) with Caitlyn. Today we played Bananagrams, a fun, scrabble-like game minus the board. I’m competitive and can occasionally pull out a win, and it’s fun joking around with Caitlyn – she takes my mind off how I’m feeling and instead I get to be distracted and have fun. For a few moments, I’m not thinking about being in the hospital or my transplant; it’s just me and a friend hanging out. In the past we’ve gone on walks around the hospital, played various card games and done meditations in the rec room. This type of therapy is different, non traditional, but I’m thankful that it’s available at the NIH. I make a point to try as many different programs offered as I can, minus acupuncture. Not because I’m afraid of a doctor walking in and seeing me awkwardly stuck full of pins (already been there, done that), but because currently, my platelets are too low for needles or body massage. I’m grateful to all the different types of therapies the NIH, and am convinced that these additional tools have helped facilitate my recovery.

When Galina, my overnight nurse came in this morning just before 5 am for vitals and labs, she remarked, “Happy Friday the 13th!”

Then there was a pause. She gave me the side-eye while checking my Ins & Outs sheet on the bathroom door. And warily continued, her Russian accent thick, “in 2020.”

I laughed so hard I nearly peed. But she’s right – Friday the 13 of 2020. Perfect. But then she put my numbers on the board and my laugh went more along the lines of holy shit balls Batman!

With a total White Blood Count of 2.84, well, that’s a number that I rarely saw pre-transplant. Typically my WBC would hover between 1.8-2.2; GATA2 just prevented my body from making more and healthy cells. I don’t recall the last time this count was above 3.0, but after my 2 pm labs, my WBC hit a new personal record of 3.31. I may have jumped up and down with my nurse, Sonja. It was epic.

In general, this Friday the 13th was a good one, a good one indeed. I was awake early and with my newfound ability to swallow, made my way easily through a 12 oz cup of crushed ice chips and water while reading Harry Potter and listening to NPR’s morning edition. It was magic. After a quick half-shower (waist dow) and wet wipe frenzy (waist up), my clean clothes felt great. I was just tucking in the corners of my bed when Tonya from my Transplant Team came in to discuss a few things, the typical – “how are you doing, any new symptoms” and then the less typical – “how do you feel about being discharged next week on Friday?

Woa. Wait, what?

It’s something that the Team has been discussing since Wednesday, when I began Engrafting my new cells, and started feeling really fucking good. The Team question shifted from “how do we support her?” to “what is keeping her here in the hospital and how do we change that?”

I thought about that for a moment before answering Tonya. 1. Bart, my bff IV pole is keeping me here; he’s essential because he provides life saving medicine and allows blood products to enter my body 24/7. 2. My inability to swallow is keeping me tethered to Bart. If I can’t swallow my pills, I can’t leave the hospital. 3. My PCA, or pain management.

So the plan has become – as long as I’m comfortable with it and my body does OK – to adjust for these changes. Over the weekend we will switch to all oral pills, except for the Tacrolimus, a key prophylactic in Graft v Host. Tonight I took my first oral dose of Micophenolate, an immune suppressive agent that helps with the rejection of kidneys (meaning that my donor stem cells would attack my kidneys) – and the two large-ish pills went down with no problem. There are a few more that I’ll start orally tomorrow. Thankfully, as my counts continue to rise, it will be easier to swallow; ensure, broths and smoothies have become my go-to choices. When I can successfully and pain-free consume my favorite Pull & Peel Twizzlers, well, that’s my litmus test that I can swallow just about anything. And finally, pain management. No changes over the weekend, but next week, we’ll start tapering off the mini-dose of pain meds that I’m given 24/7, making small changes every day. I can go home with pain medication, as needed – but again, that ability to swallow is key.

Putting puzzles together, rec therapy

How do I feel about this? Both excited and nervous, as I think anyone in this situation would be. Physically I am feeling SO MUCH BETTER. My mouth almost feels normal, except for a small snag with my swallowing. My tush is nearly healed. My bladder is suffering the wrath of the BK virus, so every time I pee, it’s like the worst UTI ever; with increased cells, though, it means my body will be able to attack this virusr and I’ll feel better soon. The same thing happened with my Mucositis; higher cell counts attacked the worst of my mouth sores and for a day, I could barely talk or swallow – but then it got better.

And if I can get through the past week that I had – probably the most pain that I’ve been in throughout the course of my life – then I can do this too.

Something else that my new cells are attacking are the warts on my feet. So much so that the other day, I went to remove my sandal strap and it took off the top bit of wart on my middle right toe. My eyes crossed and I hit my pain button. And then fucking cursed. For those that know me well, you know that I’ve struggled with my feet; every step I take, I walk with pain as a result of plantar warts, backpacking, running – you name it. I’m stubborn so I keep doing the things that are important, chasing dreams, warts and all. I’ve had then since I was 15, had major foot surgery to have them all removed in 2016, but before I was even out of my crutches they all grew back. I remember feeling like a failure.

When I received my GATA2 diagnosis 18 months later, so much of my feet struggle suddenly clicked, came into focus and just made sense. I stopped hating my toes, and chose to wear sandals because they’re comfortable (pressure from socks and shoes sometimes really hurts my sensitive warts), refusing to hide something that I had no control over and wasn’t my fault. My body doesn’t even know that I have warts, and even if it did, is unable to fight them off or make them go away like a normal body would. Mine, as my nurse Ayesha said earlier, has just given them a free ride all these years

“But there’s a new Sherrif in town now!” she chuckled.

Wound Care was called in to consult and they recommended a Honey Wrap dressing. Ayesha was kind enough to help me with this, while I took a few shots. I rarely share feet pictures, but this is just part of my GATA2 journey.

My tattoo says, “She believed that she could so she did.” I had it inked after completing the Colorado Trail in 2019, and as a personal reminder to myself going into Transplant.

The rest of my day passed in a blur. I chatted with my folks, giving them a tentative schedule and they were extremely accommodating. I met with Jen, my social worker and she was great with answering questions about the next phase of my transplant journey. We plan on touching base Monday, after the Transplant Team meets. I was informed that the apartment that Mom and I will be placed in will be ready next week; I will forever be grateful to the organization that is donating it for our use. I finished the evening off with another Ensure, my third of the day, and more chicken broth with benecalorie. Let’s just say that I’m REALLY looking forward to those Twizzlers. I chatted with Andy, texted with a few friends and enjoyed another wonderful episode of the Great British Baking Show. Thank you Day 17!

Yes, I could manage cheesecake, maybe not 12 mini ones, but I could definitely manage cheesecake.

  1. Oh Marit, I am so happy to hear you are able to be discharged soon! Congratulations-another milestone indeed. Continued prayers and love support you every step of the way. Blessings my friend and Happy Friday the 13th. What an amazing day.

    Like

  2. What exciting news about your release from the hospital! I am sure you are thrilled and nervous at the same time, and I imagine your mom feels the same. You will manage beautifully, however, and you will still be close to your doctors and others. The system at NIH has thought of everything. I’m cheering for you!

    Like

  3. Great progress. You worked hard to stay in mental and physical shape and now you are reaping benefits. Soon you will be able to wish Bart a fond farewell and be discharged from the hospital. Mom will be with you and Andy, too. Life is good.
    ❤️Dad

    Like

  4. Awesome News! I’m so happy to hear this. I hope today is even better! The nurse and doctors there are just wonderful. All my nerves being there just to start, they made the process feel less anxiety ridden. Can’t wait to read next chapter. Go WBC and beyond!

    Like

  5. Can’t begin to say what today’s been like: Making lists, Packing, Making different lists, Unpacking and Repacking. Looking forward to Wednesday afternoon when we finally meet again! We’re celebrating you❤️ We’re making a fire in the fireplace ❤️❤️❤️❤️

    Like

  6. I have been walking by your house in Asheville every day and wonder how you are doing. I tell myself, “I need to check in with Andy to see what’s happening.” And every day I failed to do it. Until today. Today I texted Andy and he let me know about your blogging project. Today I read every word you have shared (and shed a few tears on day 0 and a few other excerpts). I am elated that you are doing better and your numbers are up. Kelly and I look forward to your bright light gracing our neighborhood again. You are an inspiration and gift. Thank you for being brave and sharing your journey.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s