Day +43, Wednesday

Photo of the Day: My incredible Mom – pulling herself over rocks, using trees for leverage – in order to climb the 1,282 foot Sugarloaf Mountain with me. It wasn’t easy. The trail was steep, rocky in places, and temps hovered around 40. Oh, and Mom is a 70-something, which pretty much just makes her even more of a badass.

This morning while chatting with Mom and Dad, Dad mentioned that I really haven’t talked much about how my body is feeling; instead, I’ve just been writing about the things I’ve been doing. I spent a bit of time thinking about what he said. And it’s true, in some ways. I’m out of the hospital, the door to my bedroom is not a revolving door for medical personnel to walk through at all hours. I don’t get asked a million times per day (OK – slight exaggeration) how I’m feeling, or how my pain is, or if I’ve got a rash anywhere, have I taken my meds, etc. I’m not awoken at 0500 for labs, and I haven’t got a Central Line sticking out of my jugular vein (although I am going to develop a small scar. Boy, what a story that one will have!). Out of the hospital, I don’t have those same, constant reminders of just having had a Stem Cell Transplant.

While descending Sugarloaf Mountain today, the following quote from The Shawshank Redemption popped into my brain, “Get busy living, or get busy dying.”

Obviously, “dying” is extreme, so we could replace it with something more comforting like – “get busy living, or get busy remembering that you’ve just had a Stem Cell Transplant and your body is fragile and delicate so don’t do too much because you’ll just make it worse or get hurt or develop Graft vs Host.”

Yeah, I don’t like that one either.

View from the East parking area, Sugarloaf Mountain.

I’m feeling..my body is feeling..OK. There are moments, wonderful gifts, where I just don’t think about my transplant. Or, I’ll forget that I’m bald. Or while getting dressed, I’ll play music and sing and just feel like myself. Other times, I’ll catch a glimpse of my feet – nearly free of warts, new skin a different shade of color – and think, “holy shit, did that just happen?”

I’ve had warts for 25 years. All people with GATA2 struggle with them, and it’s horrible. I had constant pain in my feet, my toes; regardless, I ran, backpacked, and hiked. Sometime early 2018, I stopped caring if other people saw my feet, and embraced sandals. More importantly, I have always though of my feet as a sort of litmus test to what’s happening inside of my body. Pre-transplant, my body couldn’t fight anything off. Post-transplant, it’s a different story. I think I had help from the chemo and other drugs, too, but eventually, my new immune system will activate as well.

Physically – I’m sticking with the standard – I’m OK. I don’t have my energy at the level it was pre-transplant, and I’m cautious about pushing myself too hard, too quickly. I feel I’ve lost strength, but I’ve also lost a bit of weight – my understanding is that this is normal. Walking up a flight of stairs leaves me winded – on my good days, I’ll still give it a go, resting part way up. Other days, I’ll take the elevator. Or I’ll just ask Mom to climb a mountain with me. Thankfully, my lungs and heart are still doing well. I will do my best to keep them as such.

The trail. We followed the Orange blazes to the summit. The orange blazes mostly took us over the rocks and roots. Mom is a great sport!

Other things about my body? Where to begin? Obviously I’ve lost my hair, but I have little stubbly bits on my head that just never fell out. They are soft and remind me of a spikey peach. Not all the hair on my body fell out – a lot of it did, but I kept my eyebrows and eye lashes (thanks to rigorous self-imposed protocol of NO TOUCHING), and about 1/5 of the hair on my legs, arms, and throughout my body remained. My skin is incredibly dry, lips cracked even (I use petroleum on them multiple times per day), and I feel that same dryness in my mouth and throat, and extends into my pelvic region, even. The Chemo drug, Busulfan, is notorious for this, and while in the hospital, I used something called “1-2-3 Paste” to relieve the labial discomfort. Out of the hospital, Daniele recommended “VMagic” as an intimate skin cream, and made several other suggestions for safe (for me) lubricants during sex. Hey – it’s important, what can I say? It’s something that I’m dealing with at the moment.

Looking towards the West, towards what I think is the Shenandoah National Park range (way way in the distance)

I’m still dealing with a bit of discomfort from the BK infection. It basically puts pressure on my bladder and urinary tract and is not fun. I don’t recommend. I take two different medications to help ease the pain, but it will go away once my Lymphocytes are high enough to kill the virus. It may take a while, but – there you go. I try not to focus on it, and instead, stay hydrated. Speaking of hydration, I feel like I can never drink enough. And the fizzy water – soda water, kombucha – if I drink too much of it, gives me heartburn at night. I take medication to help with that, but if it’s a simple thing that I just stop drinking liquids with carbonation after 5 or 6 pm, the OK – I can do that. Water still doesn’t taste great, but Mom is an excellent example of someone who stays hydrated, and I appreciate that.

Mom and her “pop of color” red gloves!

Food texture, chewing food and swallowing is also challenging to me still. Dry things, meats, canned vegetables – it all sounds terrible. There’s a part of me that really misses my kale salads and the excellent sandwiches that I used to make. But there are SO MANY FOOD RESTRICTIONS that it just feels like more work than what it’s worth. If given a choice, I’ll almost always choose something with liquid in it – fruit, for example – over anything else. Or some kind of pasta. And cheese. And something with a strong flavor. Tonight’s dinner of Sun-dried Tomato & goat cheese tortellini with marina sauce and Parmesan cheese was a winner. Then later, while Zooming with Andy, I suddenly got a craving for gingerbread…..

Perhaps it was because I’ve been looking at this damn box for the past 7 days…

So instead of building a house, I decided to cannibalize it for parts and make myself a half-a-wall gingerbread cookie. With “snow”. Why not? Get busy living, and all.

It was, eh. I may have to try my hand at making real gingerbread. And royal icing. Just like that baking show….hhhhhhmmmm.

I really don’t know where to go from here. Every day is a new one, and I understand that I’ll be faced with challenges, some easy, others daunting. But it’s that one-foot-infront-of-the-other mentality that I’m taking with me, the understanding that I’m in for a Long Haul. It’s OK – as long as I can work that balance, find that place where I can continue to challenge myself (body, mind, soul) without jeopardizing the integrity of my transplant. That’s key.

Mom, heading back towards the car in the East Lot

Physically I felt OK, good today. Climbing was fun, fresh mountain air beautiful and I definitely want to return to Sugarloaf Mountain and explore more trails. We took the scenic, 60 minute drive out, past horse pastures and rolling fields dotted with red barns and the occasional winery. Our hike total was about 75 minutes and the steeper pitches had me gasping. I enjoyed the terrain and cheering Mom on, and cresting the final saddle towards the summit, sunlight hitting me full on was magic. After tagging the summit, we returned via a longer route, and I just enjoyed chatting with Mom in the woods. The trip back was a quick, reverse commute towards Bethesda on the 270, followed by dinner, and a Zoom date for me with Andy.

I was tired at that point and needed to lay down, vent a little. I’m grateful for our apartment, but its small and sometimes I just need my own space. And I need to figure out a creative solution to store our luggage – but that is a different story. Later, Mom and I watched the WORST Netflix Christmas movie about a prince who broke his leg and had to “recover” in the pediatric – was it an oncology? – unit of a hospital with a doctor who went to boarding school with him. Yeah, terrible.

It’s when I devoured my gingerbread house siding. Even Mom was appalled by the movie and acting. So my streak of 2 days without Christmas movies is broken, but that’s cool. Because I climbed a mountain today and spent time in the woods, jumping over boulders, taking pictures, singing loudly in the car (sorry Mom), talking with Andy and just living my life. And honestly, I can’t ask for any more than that – to keep busy living.

The rocks continued, all over the summit.

  1. What a great day we had! On the road to Sugarloaf Mountain we saw small towns and great big spaces filled with pastures and old red barns, forests and open fields. Then we climbed the mountain. Rocky terrain made the climb challenging. I asked Marit how far we would be going and she sweetly said “Up to the top”. Reaching the top was anticlimactic. No great vistas, instead, all we saw was rocks and bolders. Enormous bolders. But I got there.

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  2. It seems that a lot is going on. The hikes are a great pick-me-up. Keep on with them I like the way you encourage mom to reach the top. I expect that when she returns to me she will be in fantastic shape
    I trust that over the next several weeks you will have less pain and more endurance .
    I look forward to more positive blogs.

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  3. Wow it’s amazing you are out there hiking! Truly inspirational! I’m so glad your feet are doing better. When my dad had his cancer, chemo, radiation and stem cell transplant he had terrible dry mouth, I have it from medications so I know how horrible that is. I tried all the dry mouth relievers: mouthwash, gel, drops, Toothpaste. It helps for a short time. You might try some of those to help a little if allowed. I have to sleep with a bottle of water next to my bed which sucks cause I get up all night! Can you try flavoring in your water? That might help. I’m so glad your mom is there taking the journey with you. She is inspiring too! Send me your address when you get a chance! Thinking of you often and continued prayers!

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