Day +77, Tuesday

Photo of the Day: Frustrated after getting off the phone.

Tonight I ate dinner in my room, sitting on the floor, back against the bed. A self-imposed time-out, if you may. I ordered Alexa around, played a few songs, and sulked. There were also tears – not really sad tears, more like just a few frustrated tears.

This post-transplant existence near the NIH during a global pandemic isn’t easy. I do my best to stay upbeat and focus on the positives, not dwell on the negative. Racing Ironman taught me how to be relentlessly positive while taking things step-by-step. I do struggle with transplant related fear – it’s there, running, a constant current under the surface of my psyche. I’ll acknowledge it and do my best to let it go, to move on. Mostly, I’m successful. And finally, there are moments when I’m just angry – passing someone without a mask, a lost pair of sunglasses that could have been helpful to my sensitive eyes, being warned one too many times about potentially horrible traffic, getting a lot of “no” from my AVL hematologist’s office regarding Pentamadine treatments, constantly being asked what excursions I’ve got planned next and finally, a significant other in a whiney mood- his words, not mine.

These all happened today. And I was over it.

There are times I just want to shout, “Dude, I JUST HAD A STEM CELL TRANSPLANT. I’m the one whose body is recovering, I’m the one who was sick. JUST STOP.”

But then I feel guilty, as though it’s not OK to think/feel these things. This is ridiculous because of course it’s okay to feel and think the way I do, even with multiple emotions (angry, frustrated and grateful, for example). And it’s true: I did just have a Stem Cell Transplant and my body is healing.

I recognize that I’m extremely fortunate; post-transplant, my body is doing well (knock on wood). It’s wonderful to be able to get away from Bethesda, to hike, and travel and see new places, learning more about Maryland’s history, all while gaining strength and flexing my photographic eye.

Generally, I don’t mind being a cheerleader for Andy on the few occasions he’s upset; it is TOUGH having a loved one far far away. I understand that because of my own history as a former military spouse. And, when Dad warns of dire traffic or weather, I’m good about keeping it in perspective. It’s just what Dad does. As for the missing sunglasses – Mom found the ones that I lent her, which was great. It’s a big adjustment to live with your parent/child after 22 years of being away, especially in a small space during a global pandemic. I’m thankful she’s here, and am grateful for the time we spend together – but I’m also looking forward to being in my own home, in my own space.

So that’s where I’m at.

So….I pulled up my Big Girl pants, put in my nearly noise cancelling ear buds, stopped bossing Alexa around, and listened to Mahler’s 1st Symphony. Life isn’t all bad. And tomorrow is a new day.

Physically, I’m feeling OK. I never want to do another pushup or lunge, but that didn’t stop my nearly 5-mile walk with Mom. We visited Antietam National Battlefield, near Sharpsburg, MD and toured the area. Later, I met virtually with Jennifer, my NIH social worker, and enjoyed a 60-minute yoga session. There were some poses that I could do, others that left me hopping oddly on one foot, and two that I didn’t even bother attempting. I didn’t know people could bend their bodies in that manner; I held tree pose and watched in alarm. Later, it was completing my 30 pushups (does doing it from your hips even count??), eating cheesy pasta, and photo proofing in my room. Now, Mom is listening to Neil Diamond in the other room (still). I may have to insist on quiet hours at some point – but not tonight.

It’s been a day, but it’s almost done. For that, I’m thankful.

Below are a few photos from today’s exploration of Antietam National Battlefield.

The view South, from Rodman Ave.
Prickly, like me today
50th Pennsylvania Volunteer Infantry Monument
Burnside Bridge

  1. Some days are like that. Today will be better! Great job trying yoga again. The yoga with Adriene is only 20-30 minutes and builds up your yoga strength each day. I think you will like her and free on youtube. Her pup is adorable. Hang in there Warrior!


  2. Frustration is bound to occur now and then, especially in your circumstances. I hope today looks brighter, and I’m pretty sure it will. You’ve managed such situations before.


  3. Hopefully,today will be better. You have undergone so much in the last several months that one can understand why you have to express your frustrations. Better out than with them than to hold them inside.t
    I love your photos from Antietam, The result of that battle led to many positive consequences for the union.


  4. Having loving people in your life is such a blessing, but it is normal to feel frustration at times. You are dealing with so much right now post transplant AND in the midst of the pandemic. As Winston says it is better to express the frustration than to hold it inside. Hoping for a better day today.
    So glad that you can enjoy the hikes through the richly historical countryside.


  5. Such a brave blog to publish!❤️ I know how difficult it is for Marit to write about her frustrations, especially, when doing so, may hurt another’s feelings. But, this was so well done. Thank you Marit❤️ I am thankful to you for information that can improve our time together. In not too many weeks we will be on our way to Asheville and things will only get better.


  6. Ah, this reads like a day unraveling, and it’s no wonder, really. All who love you and especially you are going through a lot. I hope today was easier. Fear is real, and I’m glad you’re able to acknowledge it, yet set it aside. Better than burying it, I think. Your determination and optimism will carry you through. Thinking of you!


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