Day +191 & +192, Thursday & Friday – finishing up the week!

Photo of the Day (Thursday): Grateful to have Dose #1 of my COVID-19 Vaccine!
Photo of the Day (Friday): Overlook, while descending Greybeard Mountain (5500′).

This week seemed to speed up towards the end, with both Thursday and Friday containing lots of good happenings. Thursday morning, though, was a bit rough, with residual fatigue from Wednesday’s 11-mile hike setting in hard. Copious amounts of coffee – which currently amounts to approximately 1.5 cups – chased by a full breakfast of avocado toast (yum!) and a banana (less yum) had me going. I did a few things around the house, and then hit up the noon HEW (Hard Exercise Works) class. The workout was tough, and at first glance (workouts are posted online at 4 am. Don’t ask me how I know that), completing 6 rounds of a 400 meter run + 50 double under (jump ropes) + 20 V-ups (horrid sit up things) in 4 minutes and then doing it again seemed impossible. So I figured I would scale the workout to meet my body where its at. In the past, this would have been really challenging; now, post-transplant, I make my own rules according to what my body is feeling & needing, and I don’t really give it a second thought.

For the run, 200 meters sounded like a good option, though when I walked into HEW, there was a 300-meter option, which I tried, and worked well. I had enough time between sets – about 45-55 seconds – to recover, catch my breath, get a sip of water, and be outside ready to run the next round. And though I was slow, and likely still last – the gap didn’t seem as far from the other members as it has in the past, so I’m calling that a win. I felt good, I felt strong, and most importantly, happy and grateful – floppy hat and all – to be present on this day.

The rest of my Thursday was WONDERFUL – first, I received dose #1 of my COVID vaccine (Pfizer), I can’t say enough about this, it means so much. First, pre-transplant, as a person living with a major genetic disorder where my body can’t fight off infections, and my bone marrow doesn’t work properly – COVID-19 was terrifying, really tough. Add in waiting for a Stem Cell Transplant, and trying to stay healthy/strong/sane/safe and All The Things leading up to transplant, well, that’s also tough. And then that window of time, where I had a transplant and lived at the NIH and in Bethesda, and worrying about loved ones – Andy, my folks, Aunt Lucy, KK’s & Debbie’s family – it was a lot. Returning to Asheville post-transplant, everything had changed with my body, but little had changed with how we lived in this (still) COVID-19 World. And then Dad got vaccinated. And Mom. And Andy…and eventually more and more friends and loved ones. And I watched, because that’s all I could do. And I waited.

When I left Bethesda, after Day +101, I was told I couldn’t receive my vaccination until June 16; this was important, as my Team wanted to ensure my body didn’t develop any complications from Graft vs Host Disease. But when I returned to the NIH at the post-transplant +6-month mark, the Science had changed, and my Team wanted me to be vaccinated as soon as I was off Tacrolimus, my immune suppressive medication. Two weeks ago (still at the NIH), I received my Pneumovax (pneumonia vaccination); two weeks later, giving time for my B Cells to process & develop antibodies to Pneumovax, and time for the Tacro to completely leave my system, I received my first dose of the COVID-19 vaccine. I was very very very excited! And grateful.

Later, we celebrated with Nancy and Richard, Andy’s mom & stepfather, and enjoyed a lovely meal of Chicken Cacciatore. Everyone else seemed to go for the chicken, but me, I ate my weight in garlic bread…delicious! It was a great end to the night, to be able to spend time with family

Friday came bright and (too) early for Andy. By the time I made it downstairs, he had thoughtfully made coffee and set out a cup and creamer for me, no doubt payback for the lunch I made him the previous night. Regardless, it was a wonderful way to start the day. I spent a few minutes assessing my body and figuring out what I wanted to do – the weather called for highs in the low 60s with no precipitation, which seemed perfect for hiking. And the workout at HEW seemed like a good one – meaning a total-body challenge that I wouldn’t normally do on my own. I checked the clock and – if I hurried – figured I could make the 10 am HEW class and then head towards any number of mountain ranges for a great hike. In the end, I selected Greybeard, a beloved training hike near Black Mountain.

The great news – I was only 1 minute late to the start of HEW class, the bad news – I left my extra hiking long-sleeved shirts and jacket on the bed in my haste. Oh well. HEW was good – I ran the 400 warm up with Coach Joe, as I was the only member in the class. We went through a series of mobility warm up movements, and then it was on to the main set – 25 minutes of 12 Dead Lifts + 9 Hang Power Cleans + 6 Push Jerks. Yeah – I can’t explain that, but just know that I was tough, I worked hard, but I was also smart. In the end, I selected a weight of 55 pounds, the Push Jerks (basically pushing the bar from your shoulders to an up & overhead position) being the limiting factor. I wasn’t fast, but then again – I didn’t need to be. It was just me, challenging my body and taking back my strength. In the end, I made it through 7 rounds and I was really proud of the effort I put forth.

Mixing up my 5 lb & 2.5 lb mini plates. In the end, I felt strong and decided to go with the higher weight. Not every day will be like this, but today I felt good. I felt strong. And I felt like me.

After HEW, I discovered that I forgot some essential hiking clothes – like a long sleeved shirt. Thankfully, I had a spare in the trunk of my car and all was well. I wolfed down a recovery drink, a packet of almond butter + egg white (still don’t know how they do that, not sure I want to), and my daily banana. Then it was a quick 20-ish minute drive on the 40 towards Black Mountain and up into the town of Montreat, nestled deep in the mountain’s cove.

My hike felt solid. Greybeard is an approximately 10-mile/2500+ gain, and I just did the best I could. At the trail head, I texted Andy my plan and let him know that it was raining and sprinkling and that I had no desire to hike through wet weather in sub-50 degree temps. He gave me a thumbs up. Thankfully, the weather cleared quickly and I enjoyed a 2:10 ascent to the summit. It wasn’t my fastest – not by a long shot…but it’s the first major mountain that I’ve climbed since my transplant, and as my former go-to training hike, I couldn’t be happier. (And yes – the other peaks that I’ve done still count as mountains…but driving up most of the way detracts from that climbing thing. And those peaks are still meaningful in my recovery. But today was extra special).

A few pictures from my hike:

Crossing Flat Creek
In addition to leaving my shirt at home, I forgot my sunscreen in the car. I did my best to improvise, pulling my hood up for the entire day. At one point when it was really sunny, I even wore my kerchief over the bridge of my nose and cheeks. Floppy hat was left in the car and a winter hat was used instead.
Walkers Knob shelter & group camp area
Huzzah! Greybeard summit! Windy, sunny, happy! I stayed up here for approximately 2 minutes before descending. Once I dipped below the ridge, 1/3 mile past the summit, I was mostly out of the wind. Floppy hat would have blown away. I’m guessing temperatures were in the low 40s, if that.

My descent was thankfully uneventful, and my legs hung in there with the rocky trail & terrain. Overall, I was pleasantly surprised with how my body performed and cautiously look forward to pushing myself more, as long as my body does OK. Even my skin came out alright, with only the slightest bit of pink on my nose and cheeks. I’ll have to see how that translates later in the week with my rosacea and/or possible acne.

The drive home went quickly, chatting with Mom. I’m so excited to see my folks next week! My shower felt WONDERFUL and dinner was breakfast – pancakes and bacon, because why not? Oh – and a very special Fin du Monde beer, an old favorite of mine that I’ll have on special occasions that I’m happy to report tasted just the same post-transplant as it did pre.

And that’s it! It’s late and I’ve blown my bedtime routine completely out of the water, but oh well. It’s Friday and I had pancakes at dinner – it’s OK. I hope that wherever you are, the rest of your week went well. Have a terrific Saturday & Sunday!

Pancakes, bacon & beer. I think I know why he’s smiling

  1. Loved our phone “date”! So great to talk about our visit and make plans. Dad and I can’t wait.
    Your daily activities take my breath away. Not many could keep up with you. Let alone after a stem cell transplant. Amazing. You’re making your body strong and us so proud.
    See you on Tuesday ❤️

    Like

  2. You are fantastic. That exercise program would overwhelm an NBA or NFL player. Keep on keeping on!
    We are so looking forward to our visit.
    ❤️Dad

    Like

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