Day +129, Friday

Photo of the Day: Today was a big milestone – I hiked 10 miles! Double digits! I’ve thought about hiking 10+ miles, what it would be like, how I would feel, when it would happen – even from before my transplant. And today, it just felt right.

In spite of my blood draw being at 0930, I still managed to be a few minutes late, but within an acceptable five minutes (for me). I’ve chronically run a few minutes late to things in my life – perhaps my donor has as well? And now with his blood in my body, well, it’s just a recipe for running a tad more late? Of course, I’m speculating. Anyway – blood draw went well, butterfly needle was used (they don’t even ask anymore), and I bid the techs an enthusiastic, “Happy Weekend!”

Afterwards, I was determined to head out for a hike along the (Blue Ridge) Parkway and MTS (Mountains To Sea) Trail, but first I needed to take care of a few business related things. I’m grateful for smart phones, in this instance. Since Starbucks was out of my beloved Chai Tea Latte, I instead ordered a triple shot Cappuccino – fatigued as usual, I thought this might help. So I parked in the sun, slathered on extra sunscreen and followed up with emails, texts and a phone call. It felt good – even if I couldn’t sit inside, to be out on a late winter/early spring day.

I’m told that my body is producing systemic inflammation like crazy, hence the super puffy eyes. Usually, later in the day it will decrease, but this has been a constant since November or December. My mask lines are comical but eventually disappear. Wearing masks is so important – for all of us, of course. It’s a small price to pay to help keep each other safe, an act of kindness towards others.

It was a short drive to the Parkway from Starbucks. Once parked, I scrolled through a few podcasts, but nothing really seemed exciting. On a whim, I entered “Stem Cell Transplant” into the search engine and was rewarded with the “Anthony Nolan” Podcast. Anthony Nolan is a UK-based charity organization that helps connect patients in need of a Stem Cell Transplant with their donor. It has been around for 45+ years and was named in honor of Anthony, Shirley Nolan’s 3-year old son who developed a rare cancer and needed a life saving transplant. In addition to their incredible website, they’ve also got a great section on patient resources and they produce a podcast. I was hooked.

For two hours while hiking, I heard other patients and listened to their unique experiences. I also listened to an episode from an Oncology Nurse that related to life after transplant; more interesting, I finally figured out how to differentiate “Tired” from “Fatigue”.

The recovery process after transplant is typically 6-12 months, but for some recipients, it can take years. Often, we struggle with feeling tired all the time. Tired simply means in need of sleep or rest; a good nights’ sleep and one feels better. In post-transplant life, a good nights’ sleep doesn’t take away the tiredness – or fatigue – I feel during the day. Sometimes I am just exhausted and no matter how much rest I get, it doesn’t go away. I have my days where I take it easy and then I have days like today – where even though I feel fatigue – I still want to challenge my body, with the notion of getting stronger long-term. I think it will just take time.

One more really wonderful thing I learned is that there’s such a thing as the World Transplant Games (WTG). As a former competitive athlete, this definitely piques my interest…I’m not exactly sure what I want to do with this, but its wonderful knowing there are options for people in their post-(solid organ, tissue, bone marrow)-transplant lives to compete. I may have already reached out to the North Carolina Team Captains.

(I would be remiss to say that I’m lucky – my donor was alive when he donated his Stem Cells. But for some solid organ and tissue transplants, that’s not always the case. I very much appreciated the respect that the WTG has for this aspect of transplant).

When I finished, I was pooped – too tired to even text Andy those words. But I was also really happy; even though it was just a hike, it was one more step in my post-transplant life. (Or 10-ish miles of steps). When I was out there on the trail, there were bits that were hard; the MTS is famous for the PUDS (pointless ups and downs), so I was constantly hiking along undulating terrain. And there were some steeper hills that in my pre-transplant life didn’t phase me – but today? I stopped part way up and paused. And the paused again before actually making it to the top. But you know what? It was OK – because I was out there doing and honoring my body at the same time. I stopped to use the bathroom 2x (no emergencies here, thankfully!) and also to sip water and eat two bars. They were delicous!

Tonight, Andy prepped for a pool (billiards, not swimming) tournament, which meant that I enjoyed a lovely dinner of Avocado Toast with sunny side up eggs. The secret to GREAT Avo Toast, is to mash up the avocado and mix in a bit of lemon juice and salt & pepper to taste. Toast sourdough bread, spread the avocado mixture over the toast, and top with 2 sunnysideup eggs. It was amazing. My second dinner consisted of Girl Scout cookies, which in my onion, was just as amazing.

Now it’s late and I’m tired. I watched Kung Fu Panda, a classic and favorite movie and thought a bit about this post. Tomorrow, Andy has a pool tournament in Knoxville, TN – when there’s not a global pandemic, he’s actually a very accomplished pool player and has been playing in leagues for 20+ years. I’m nervous about general population mask wearing, him being indoors and people practicing social distancing. Vicky, the (lovely) league organizer for Blue Ridge APA assured Andy that COVID CDC guidelines will be in effect, but I’m still nervous. Walking into a pool hall isn’t a choice that I would make right now – but then again, I just had a Stem Cell Transplant and am recovering/immune compromised. Plus, I’ve been in the NIH and post-transplant “bubble” – I wear a mask whenever I’m around people, spend time outdoors and really only go to the grocery store on an “as needed” basis. Andy, who is generally healthy, has had his his vaccine, true, but it also takes time to build up immunity, something that he likely won’t have a few days after his first of two doses.

This has been something that we’ve discussed and has been a big deal; doing more public facing things wasn’t an option until after Andy received his vaccine. I’m not eligible until mid-June, at the earliest. The balancing act is tough – it is for all of us. I want to be supportive of Andy, in every way possible, and he does his best to stay safe – I just don’t trust other people, I guess. It’s one thing if you have an ill/recovering/health-compromised individual at home whom you are trying to protect and stay safe for, and its another thing when you don’t.

I could go on and on, but it’s even later so I’ll stop.

My weekend plans involve exploring Smokey Mountain National Park and doing a hike around the Knoxville area. While I’m choosing to not step into the pool hall, we’re staying at a local Air B&B. It gives me a chance to support Andy in a way I feel comfortable with. I always enjoy travel; getting to see a different area and hiking a new trail is no exception. Tonight I am tired, and my body feels a little stiff – but I’m good. Small blister on my right fourth toe (the Little Piggy that “had none”). Eyes and skin are still dry, so that’s unchanged, in spite of the 8 different lotions and creams I’ve applied throughout the day. At least it’s not painful – yes, I am thankful for that. And I should probably drink a 4th Liter of water before bed – just because I hiked far…repeat after me: I love my kidneys, I love my kidneys.

On that happy note – have a terrific weekend everyone!

Somewhere around the 5.5 mile mark of my hike. I loved the light drifting through the trees, and the round trail blaze always makes me smile.

  1. Thank you for your blog. The information I read here was interesting and enlightening. I especially liked the Anthony Nolan Podcast. I’ve been looking at it for the last 45 minutes. Fascinating,
    informative, and user friendly. And I cheered when I learned about WTG! Definitely something for you. Enjoy your time in Tennessee. Good Luck to Andy.

    Like

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