Day +20, Monday

Photo of the Day: So long Black Bucket of Toxic IV Meds! Today, my Team removed my IV Tacrolimus and switched me to the pill version, in an effort to get me ready for discharge on Friday. Tacrolimus is an immunosuppressive drug used to help prevent Graft vs Host and organ rejection after transplant, and was the last of the IV medications I was taking. Currently, the only reason I’m still hooked up to Bart, is because of my PCA (pain management), and my Team is tapering me off from this as I write. No offense Bart, but I’m hoping to be free of you by Wednesday morning. It’s not you, it’s me. I would sorta like to be able to wear a top that does not have a zippered down front, take a full shower (none of this wet wipe stuff), or put my bra top on over my head, and not shimmied over my hips. After 17 days of being hooked to you, and your loud wailing beeeeeep beeeeeeeeeeeppppppsss, it’s time for this relationship to end.

Another day passed at the NIH. The Mucositis continues to improve and I managed to down Chicken Pot Pie for dinner. The BK Infection in my bladder is still there, but my morning labs revealed the INCREDIBLE addition of both monocytes and lymphocytes to my White Blood Cell panel. Pre-transplant, the lymphocytes I had, really didn’t know how to properly do their job; I did not have monocytes, ever. And now I do – proof that my donor’s stem cells are engrafting into my bone marrow and magic (or science or a little of both) is happening. I am so grateful!

When the Team came in for rounds this morning, we discussed a few of the other symptoms I’ve been experiencing, including increasingly dry skin, chapped lips, itchy eyes. Apparently I’ve got a small rash on my lower abdomen; pulling down my yoga pants in front of 8 people was not my most favorite thing to do, and I erred on the side of modesty. One of the female docs who specialized in infectious diseases stayed after and did a more thorough examination – and said it might be something like skin irritation or the beginnings of Graft vs Host (I’ll do another post about that. Basically, GvH is where my new cells, from my Donor, attack my body and organs. Cases range from mild to deadly; there are many factors that go into GvH). She recommended Aquaphor to help with the dryness – and to report of any changes.

Then my nurse Elaine shared a lovely Girl Scout almond/chocolate/mint thing with me, that she purchased from a co-worker that she really likes, in an effort to help with their daughter’s Brownie troop sales.

I had to admit: after 12 days of mostly bland flavors and a liquid diet, these cookies were a shock to my system. I stopped at first bite for fear of what could go wrong in my GI system. Wise choice, my friend, wise choice.

After this, I spent some time working on Mom’s travel arrangements, and I’m SUPER EXCITED to report that she’s flying out to the NIH on Wednesday!! I love my parents, both very much, and my transplant has been wonderful in some ways, but incredibly challenging and isolating in others. I just want to give Mom a hug and tell her that I love her – I’ve missed that connection throughout my hospital tenure. Zoom is helpful, but not the same. And if all goes according to plan – leaving the hospital on Friday and moving into our long-term apartment in the heart of downtown Bethesda – I’ll get to see Andy that night. I’m over the moon to see him, if only for a weekend before he returns to Asheville. Thankfully, Mom stays in Bethesda long-term with me as my caregiver; I’m so thankful to her and my Dad for being able to support me when I’m newly out of the hospital.

Bart, about to loose IV Tacrolimus.

The rest of the evening was uneventful, just how I like it. I did eat most of my chicken pot pie, while Andy enjoyed Chicken & Spinach tortellini soup; it was another Zoom dinner date, what can I say?

And then rather than watching MSNBC, I went for BRAVO and enjoyed the classics “Below Deck” and “Real Housewives of… Salt Lake City”….? The second was new to me, but they’re all the same anyway, right? It was fun to vege out while going over photos and thinking about today. Tomorrow will be exactly 3 weeks from my transplant and while I know I’ve still got a long road ahead of my, I’m just grateful to not be in pain, that my cells have reached Engraftment, thankful for my donor, and looking forward to the promise of time with Mom and Andy.

  1. Three cheers for monocytes! I’m a retired lab tech, so I know my cheers! Marit I’m so stoked over your new white counts! And worrying about your fashion faux pas is a sign of robust health returning for sure. Thanks so much for sharing this with us….allows us to be closer to you and understand what you’re going through. Loved the detail of your dad tearing your blankie in half so you could retain at least half the comfort during that ordeal in Czechoslovakia. I agree, he’s a true mensch! Enjoy your time with your mom…I know it will be a true bonding experience. Someday soon I hope we can talk again, and someday visit in person. Take Good Care!

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  2. All good news! So happy to hear. Marit we are cheering you on here at the Ambler house. We speak of you daily and tell the kids about what’s going ok in their terms. We’re all so excited at the thought of being reunited soon!

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  3. So glad that pain has subsided. I will miss Mom but having her as your caregiver is a real blessing Sounds like your condo will be a good place for you. Hopefully, I’ll be with you folks over Christmas and New Year’s. So grateful for the support you’re receiving from Andy. What a guy.
    Keep up the recovery. Your positive attitude is paying off.
    Take good care of Mom when she gets there.

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