Day +105, Tuesday

Photo of the Day: Lake Powhatan during today’s walk with Mom, Kurt & Hazel.

I just spent the past 45-ish minutes searching for a skittish cat, who – when afraid – tends to poop in corners. Since a) I do not like poop in the corner and b) want all creatures in this house to be OK, I did my best to find and tend to Wheezy-Bear (WB), but was unsuccessful. By the time I returned to the bedroom, lights were out and Andy was attempting to sleep. I shut myself in the bathroom, finishing my nighttime routine started 50 minutes earlier, when Mom ushered WB back into the room saying kind things like, “there you go WB! That’s a good girl, yes, back in your room!”

It was funny, and had it been a few hours earlier, I would have laughed. But it was late. And Andy was almost asleep.

I did my best to quietly shush the cat in and Mom out, but it just failed. I heard a faltered, “….Babe?” Somewhere in that word, there was a comment and question all wrapped into one. Mom quickly closed the door and I retreated to the bathroom to finish up, after which, I crept silently through a darkened bedroom to grab my laptop and phone from my nightstand. Andy was tired: he typically wakes at 5 am and just keeps moving all day. In an effort to not disturb him, I’m typing away in our upstairs Study/Lounge/TV/Multipurpose Room (we haven’t figured out a name yet).

I feel terrible and guilty at the same time. For the past 4+ months, Andy has been here with his own routine. Things are obviously different now with my return. And this is important to point out – it’s just another part of a Stem Cell Transplant. Just as much as I’m adapting to returning home, Andy is adapting to me and my Mom. I wish I could make it easier, or just wave a magic wand and have everything figured out – but in spite of my new Elf Ear, that’s not how this works. We both need to live and experience it.

So that’s that. I’ll work on my guilt – because I didn’t do anything wrong. I just feel badly for Andy who is tired. I wish I could make it better for him because I love him and am concerned.

Alright – moving on –

My Hematology appointment went great. I appreciate my doctor and his team, and we have a good system set up, thanks to great collaboration between his nurse Mary and my NIH Team. Labs were drawn, but I won’t get the results for another day or so – and that’s OK. It’s another step in this post-transplant life (not having immediate results). I must say, I really DID miss my NIH phlebotomists; they used small needles and were gentle with their stick – neither of which happened today. I’m hoping that Thursday’s blood draw is significantly improved. So does my vein.

Post-appointment, Mom and I swung my FedEx, overnight express mailing the blood sample the NIH requested. This will give my NIH Team a chance to compare Tacro level results with my AVL Hematology lab – there won’t necessarily be a discrepancy, but it’s nice to have a baseline comparison of the NIH lab to my AVL lab. After that, we met up with my excellent friend Kurt and his lovely puppy Hazel for a walk in part of Bent Creek. Yes, our parking lot’s name of “Hard Times” sounds terrible, but actually provided one of the more level hikes in the area, taking us past the lake and onto some gentle trails. It was lovely introducing Kurt to Mom, and seeing an old friend.

Later, I gave Mom a quick tour of Western Carolina University at Biltmore Park, drove past some beautiful Craftsman Style Houses, and stopped off at the Asheville Rowing Club. I’ve been toying with the idea of trying a “new” sport – or “old new” sport in this case, having been an Elite Rower in a previous life. At one point when I was 19 & 20, I rowed the lightweight single sculls for the US National Team, and went to the World U23 Championships in Denmark. It was an incredible experience.

But then that Fall of 2000, as a sophomore in college and rowing at Wisconsin, my bone marrow shut down, meaning that it just stopped producing new blood cells. I asked so much of my body and with a dream of a future Olympic spot, I worked incredibly hard. But my body just couldn’t keep up. I spent Christmas in the hospital and was extremely sick with multiple infections, including a very dangerous case of CMV. It took years to recover after that – in retrospect, I should have taken a semester off from school, but I also didn’t think that was an option. When reviewing my health records from that time, Dr Hickstein – the head GATA2 Transplant doctor at NIH – commented, “wow. You really dodged a bullet with this one.”

But I’ve always loved the sport of rowing. There was a lot of sadness when I stopped, a grieving cycle I didn’t yet have an understanding of or name for. My life took different turns, I lived in many places and it wasn’t really something I pursued because it was just too painful. I had so much hope – but then my body just stopped. And deep down, I suppose a piece of my heart did as well.

With distance and time came understanding and peace. I understand about my GATA2, the likely culprit, and I’m not planning on making an Olympic or World Championship Team. It just sounds incredibly beautiful to head out in a single scull.

At ARC I was fortunate enough to meet a lovely gentleman who gave me a quick tour and explained the club’s policies. I would only be eligible to row in singles for now – and honestly, that’s fine by me. I could take things at my own pace, my own tempo – I’ve already been invited to join the 70-somethings for a row around Lake Julian. Thankfully, because I’ll be sitting backwards, I won’t see them leave me in the dust.

To be continued with this one, to be continued.

The rest of the day was OK, mostly because I took a 90 minute power nap. Mom watched Top Chef, we all enjoyed our Crock Pot dinner, and then Andy & I headed over to Kurt’s to help with a fridge installation. I mostly laughed at their terrible jokes and still-terrible puns, and enjoyed Mike’s company when he returned home. Driving home with Andy was nice – we held hands and talked. I don’t really remember all of what was discussed, just that his hand was warm and I was happy to hold it.

That was my favorite part of the day.

Andy and Kurt – brothers from another mother. And no, I can’t believe I just said that, but it’s true.

  1. Wonderful that you are considering a return to rowing. I recall how that was your passion. I’m reminded of this when I descend to the basement and see your oars which have been been stored there since you “retired.” I hope you will be able to make a comeback. I know you will because you have made fantastic progress since the transplant. Keep on keeping on!!!
    ❤️Dad

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