Day + 36, Wednesday

Photo of the Day: Mom dusting me on the inclines during our 40-something minute walk through the neighborhood.

Today was a good day. It involved setting up a Christmas tree, a FaceTime date with Andy, buttered pasta with Parmesan, a chat with Dad, getting mail, a Christmas movie (or two) and laundry. Not in that order, of course. But it still felt pretty darn productive.

If there’s one thing I can say, is that today’s walk just about did me in. It was hard. I walked slow, and had to catch my breath on the neighborhood inclines. So incredibly different from where I was 2 months ago – backpacking, running, going to the gym, holding a 32-minute plank (yes, that actually happened). I know my body has been through a lot – and I recognize that so much has changed. And I don’t really care about the lost fitness or strength, I know that will return.

But there’s also a part of me that is afraid. I’m afraid that I won’t be as strong, or that it’s going to be really really tough getting back to my “normal” self. For the past 25 years when I’ve been athletic, I’ve also dealt with sinus infections and pneumonias, and later lots of lung issues and fatigue stemming from my GATA2 – but I’ve always ALWAYS fought my way back, pressed on regardless because gosh darn it, that’s who I am. I know the work and effort it takes to comeback after illness, because I’ve lived it most of my life.

But today I was just tired. I think that’s normal, at least that’s what I’m telling myself.

So I’m trying to give myself some compassion and self-love. My body is building an entire new immune system, it’s been through a lot of fucking trauma in the past 6 weeks. The chemo alone has left me wiped, not to mention low counts and all the medications that I’m on. I need to remind myself that I’m at the start of my outpatient journey- and still pretty vulnerable.

And that this is OK. I’m OK – and that as long as I do the things my doctors want, it’s going to be alright. That fire in my belly is still there – just like the rest of my body, it’s slowly stirring itself awake. To be continued…

Later on Mom and I set up the tree and enjoyed Elf and Bad Moms Christmas. It was awesome, especially with the tree up and my buttered noodles. The first ornament was a picture of me & Andy, the second was Santa. We’re in good company.

Mom reaching for the high branches. This is when I need my 6’3” boyfriend to reach the top branches. Or I could just do the totally unromantic thing and use the stepping stool I got from Amazon.

Tomorrow I’m back in the Clinical Center for half the day, and we’ll get an update on bloodwork and counts! For now, goodnight!

Sometimes you just want a double cookie ice cream sandwich. They work for hot flashes, too.

  1. Beautiful tree! You and mom did well.
    You will regain your stamina! That’s what you do. You have met every physical and mental challenge with determination and hard work. Just think, you were in hospital for over 1 month undergoing a horrendous medical procedure and in less than 1 week after release you are out for a long walk and on the same day you with Mom assemble and trim a tree. You have come a long way and will reach your former powerful form.

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  2. Dear, dear Marit, recovery can seem like a chipping away at self oncepts for someone as goaland achievment oriented as you. It can feel like an attack on one’s identity as strong. As a child who prided myself on being able to walk on acorns barefoot, I have experienced such. There hasn’t been much call for that skill, but the persistence and endurance connected has paid off. For training your body it can be best to not push to struggle or exhaustion but stop while it is going well and then have some ejoyable actiity after even a small one. Bodies have good memories! You are right to think of reccovery as a marathon with all of us cheering you on! I don’t have mudh chance to teach self management these days so thanks for listening. Hear the cheers. Love, Grace and family

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  3. I just took a picture of Julie and my message disappeared . And I probably can’t attach it here! Anyway I was saying your tree is beautiful, and that you’re exactly where the doctors think a transplant patient should be at this point. And that your body is setting the pace this time for healing, despite the enormous drive and effort you apply to every facet of your life to attain great heights! Going slow is never fun though. Maybe the universe is giving you an opportunity to do something now that is very special? !

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  4. I am sure it is hard to be patient as the body heals, and I understand your fear that you won’t return to your normal strength. But time does amazing things, and bit by bit you will be moving forward and making progress. You’ve already been through the toughest portion of this journey, and look how far you have come. I’m cheering you on from Minnesota!

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