Day -2, Sunday

Photo of the Day: Dinner date with Andy. I had called in my order, while he was waiting for his to heat on the stove. His was ready before mine arrived; I inhaled my food before he could finish. It was helpful that my nausea was mostly gone.

I started my day by not feeling the urge to toss my cookies.

It was a good start.

Overjoyed, I decided to get tea. Scratch that. Overjoyed, I decided to check in with my nurse Patricia and make sure it was safe for me to order tea from the cafe cart. (The 4 rounds of chemo I’ve gone through have now, essentially, hoovered my bone marrow, and my resistance will continue to plummet for the next several weeks). My cafe cart tea is on borrowed time!

But it was so quaint, and cute and homey – I just wanted to curl up with my tea and watch the rain.

For the record, I choose the Pomegranate. It was very soothing

And then there was the atrium. When I think of this spot, I think of Harry Potter and the Ministry of Magic (with a hospital twist). That being said, I’m tearing my way through Harry Potter all over again, so everything that I see has a slight Harry Potter filter over it.

Anyway – I tried to photograph the atrium with the help of my tripod, but a random security guard didn’t seem to think this was a very good idea. I may have pulled the, “I’m having a bone marrow transplant and this is how I communicate with friends and family…..,” card, but she didn’t seem impressed. It was OK – the shots were hard and I was finished up. And this just means that I get to figure out another way of showing the massiveness of the atrium.

Me and my bobble hat, looking up towards the ceiling.

Challenge accepted!

It ended up OK, though – because I wandered up to the 7th floor, where I sipped my tea and looked out on the fall colors and rain. For a brief moment, I felt almost normal – like it was my choice to be curled up in my chair just watching the skies fall. I was happy to be sitting here in this moment.

The rest of today was thankfully uneventful. My lymphedema is behaving, with the help of the nighttime wrap. The nausea stayed away and I was able to get down all my food, thankfully. And I didn’t even need to eat a non-strawberry tasting shake. My potassium level has begun to drop because of the chemo, so my afternoon nurse brought in three very large pills for me to swallow. I was assured that it’s easier than it looks; she was mostly right.

Today I was also visited by Dr. Holland, the incredible doctor who discovered GATA2. He was on call at the NIH this weekend, and just wanted to pop by my room to see how I was doing. We exchanged our usual elbow bump and chatted. I told him that I was scared, and nervous at times – fearful that the new stem cells wouldn’t take, or that I would have really serious complications.

Dr Holland looked at me and remarked that as good as the science is, we are all just waiting to see how it goes. And that scientists don’t always have all the answers. But that there’s been a lot of research and calculation that has gone into this, and this procedure is necessary. And I don’t want to paraphrase any more, because he’s such a lovely human and I don’t want to butcher his words – but Dr. Holland made me feel better,

But I’ll be honest – I am scared going into this. I don’t know what will happen, and with the chemo in my rear view mirror, I know the only way forward is with the transplant. This will save my life – and I’m still nervous, scared, trepidatious. I can’t change it. It’s like I’m strapped in to the old wooden rollercoaster at Valley Fair, the one that I went to as a kid and just loved. I’ve left the loading area and I’m climbing the hill approaching the top, the chunk-chunk-chunk-chunk-chunk of the chain pulling me up, up, up, anticipation growing. The world is much higher up here – I can see so much further than I thought possible (that, and MN is totally flat) – and it doesn’t matter that I’ve committed to the ride. I’m here, I’m on it, we’re going.

And for the life of me, I don’t know where I’m at on the stem cell ride – top of the hill, over the edge, screaming up to the next plummet? I don’t really think it matters – I’m on this rollercoaster and have to ride it through to the end – through the good days and the bad, the nauseating ones as well. And everything in between. The way through is my journey. It won’t be easy, but when have I ever done things that are?

  1. I so feel for you. One more day and then the transplant. After that the road to recovery and construction of a new and better immune system. There will be bumps on the road but you have conditioned yourself and with your strength, will power and the best medical support in the world there is no doubt you will emerge healthy and safe. The next 40 or 50 years will be much healthier than what you have previously experienced.
    I so wish that Andy, mom and I could be at the NIH with you through all of this.
    ❤️Dad

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  2. Marit, doing things the easy way, not a chance! You’d see several ways to accomplish a goal; but every time, you’d choose the most difficult way. I now know why: you are curious, driven to learn, to explore, and to solve. With every move you make, you learn more and understand more. Be brave and believe what Dr. Holland has told you!

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  3. I can only imagine you must be scared, but I agree with your parents: you have proven that you are up for the challenge! And you have scads of cheerleaders ready to virtually hold your hand along the way. I’ll be thinking of you especially in these next days.

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  4. Just like that ValleyFair roller coaster this will be a ride, and you are ready for it! I know that deep down you are. Id be scared too. But we are with you and thinking of you always
    Ps that tea cart looked amazing, i love coffee but tea is my go to no matter what

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  5. As a fellow Minnesotan, I have fond memories of Valley Fair summer trips. The trepidation of the rides, the fear, and excitement. The nervous anticipation. The “geeze how long has this been here and is this white wooden structure still sound?” Yet also, the sheer joy. I cannot imagine what you’re going through in this roller coaster of life, but I have hope knowing those super smart docs and nurses are WAY more attentive and knowledgeable than the ride attendants at VF. 😉 You’re in great hands. Be well, Marit. ❤️

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  6. Your roller coaster image is perfect! Only a total goofball wouldn’t be scared. You are clear-headed, bright, very funny and you will do this!!

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  7. Hang in Marit…rescue is only a couple of pom poms away. You are so amazingly brave and aware of yourself in this endeavor. Thoughts and prayers to you, your friends and especially your Mom & Dad!! ❤ Lorelei

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