Day +23, Thursday

Photo of the Day: Waiting. Just waiting to be escorted to the ICU for my sigmoidoscopy. My Team, while consulting with the GI folks, decided that both an endoscopy and colonoscopy would be too invasive and they could likely discover the same result (since whatever I have is affecting my entire system) with a more mild procedure, the sigmoidoscopy which only explores the rectum and sigmoid colon. This was also significant because two hours prior to the procedure, my platelet count was at a whopping 15, a far cry below the 40-50 the GI folks wanted. So I received the first bag of platelets in my room and second while being wheeled into the ICU.
Sometimes this process feels so lonely. It’s 2020 and we are all adapting the best we can. And sometimes its really hard to not stay with fear, especially when something new pops up and I can’t help but question, “am I going to be OK?” And the people I love are spread out too many miles away. I know – I’m putting my best foot forward, doing my best to send positive energy into the universe, walk every day here, engage socially as much as I can, etc. But in this pre-procedure moment, I felt apprehension, fear, sadness.

Day +23 is rounding the final curve and headed for that finish line, just as I am ready for bed. It was a busy day today, and I’m happy to report that I didn’t spend all of it in bed with ugly pajamas. Nah, I slightly sharted myself the previous day in bed, so into the laundry the old pjs went, into the linen hamper my sheets went. By the time I had gotten out of the shower, my awesome nurse had already changed the bedsheets.

Remember that comment about when in doubt – go to the bathroom? Yeah – I was speaking from experience.

Morning rounds came and went. The original schedule was to do more of the same. Not let me eat anything while my GI system “cools” down, and also to better be prepped for the procedures that were supposed to happen Friday morning. I was reconnected to Bart – apparently its more difficult to break up with him than I thought. But because of my throwing up the other night, my Team is more concerned with me not missing ANY of my anti-organ rejection drugs, so while my system is settling and we figure out WTF just happened with my gut, IV important meds it is.

NaDine getting ready to place MMF or Micophenolate, an immunosuppressive agent.

Then Caitlyn from Rec Therapy came by and we had fun playing scrabble. I must say, since starting Words With Friends and actually learning some strategy, this was more fun for me than for Caitlyn. Then again, since I’ve been in the hospital, I’ve been a bit off of WWF. And coffee, come to think of it. And working out, yeah that’s not happening. But, but – my body is growing an entirely new immune system!!! How awesome is that?

I don’t remember the final score, but I think that I was up 100.

And then the Lymphedema doc came in to check on me. As did the Pain & Palliative care folks. And then the GI. And then nutrition. And just as I was about to watch old episodes of Below Deck (BRAVO, oh how I’ve missed you!), my nurse came to tell me that my procedure was going to happen today and to stop drinking anything. My water jug was half way to my lips and I may have whimpered.

“All right, all right, finish that, but small sips!”

Then the plans changed again and a second time. And then someone wheeled a chair into my room and I didn’t even have a hospital gown on. She he apologized and said that he would be back in 6 minutes to pick me up. I stared at the chair. And the chair stared back at me.

Eventually I rode the chair down. But only 2 hours later.

In the end, my Team decided they wanted to go ahead and get biopsies from my colon asap. And because my platelets were so low (at 15), they would need to pump me full of platelets in order to control and stop the bleeding. Quite frankly, it’s a shitty place , these biopsy sites, all up in your colon – so my body being able to clot where the tissue was removed is essential to preventing additional blood loss or infection. The first bag got me up to 27. So my Team met via Microsoft Teams and they talked. And talked . And talked some more.

And they blew the house down!

Oops – wrong story. Nope, they decided that as long as the GI folks were OK with me receiving platelets while on the table undergoing the procedure, they would give me another full bag. Something worked and the universe came together for this one. Me, my platelets, Tacrolimus medicine and Bart were all wheeled into ICU and the rest is history. Oh yes, and then there was a long scope and pressure. I was told that it was OK to fart on the table, but having already been slightly scarred by the sharting incident of the previous day, I held back and waiting until I was safely in my room to let ‘er rip.

NaDine scanning my ID band for the umpteenth time this day

So it’s Day +23, and I think I need to look at my Stem Cell Transplant process in terms of running a marathon, or Ironman. There will be times that it’s hard and I’m suffering, or I’m really not motivated or feeling great. But there are other times that the effort is easy and there’s no place I’d rather be. For the race aspect – there are times on a course where you just want to stop, or crawl into a hole or lay on the beach and wonder – WTF am I dong here? But I don’t…I got through those tough times by putting one foot in front of the other, and repeating that over and over and over again.

I understand that the trajectory to recovery from a Stem Cell Transplant is not easy – its quite a bumpy road, in fact. But perhaps if I just keep my head down, keep putting one step in front of the other, continue to put good vibes into the Universe, well, then, this too is possible. I’ve done this before, I can do it again.

“She believed that she could

so she did.”

Tattoo on my right foot

  1. You are, indeed, practiced at putting one foot in front of the other, and you will do that during this marathon, too. You already are! I’m cheering for you from Minnesota.

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  2. So glad you have so many experts following your immune system’s every move!! Hope that all this competence helps with your fear! I’m so impressed by your resilience: thanks for letting us be with you. Things are really getting wierd in the outside world—we can’t help but think you’re in the best of hands right now. We love you!!!

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  3. Oh! the roller coaster. If they were ever fun for you, this kind is not. Your body is telling you it is smart but the drugs should override your body’s detection skills. OK to baby yourself a bit here. It is good you are hopeful. Hope is free. We are with you all the way. Yes, a marathon it is. Much love, Grace and Keith and family.

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  4. If anyone can do a marathon, Marit, it’s you! Although this time there was no way to have predicted what the process would require of you. Every one of us is at the sidelines, cheering for you as you go the next lap on the journey. You are showered and embraced with virtual hugs and healing thoughts from across the universe. We are there with you in spirit.

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  5. So much going on, including all the changes along the way. Not easy to work with everything so fluid, when all you want to do is move forward and get to the condo with Andy and family. I heartily want this too. And it will happen! Soon! I’m packed and ready to go at a moment’s notice.

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  6. You can do it. You have met every challenge (athletic, academic, artistic, and serious illness) and prevailed. You will do it again and emerge with a well functioning immune system. There is no holding you back. Your strength and good nature are carrying you through to the desired goal.
    ❤️Dad

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  7. Marit- ever the Iron Woman, survivor of a Torrey Pines bike crash, scaler of mountains, Renaissance woman. You would have been ruler of Westeros, no doubt. Thank you for keeping us with you. And we are with you. You are not alone.

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  8. For sure Keep your head down and keep grinding. Thinking of you today and wishing you better health and a speedy recovery.

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