This was one of those posts that was started Monday and it is now Wednesday. Update, it is now Friday. I’m currently in the waiting area of Mission Health’s Cancer Care Center, awaiting my long anticipated PET scan, checking for problematic lymph nodes due to continued high Epstein-Barr viral loads. To be clear, because I no longer take immunosuppressive medications, the chance of post-transplant lymphoproliferative disorder (PTLD) is low – how low? So low that the NIH wasn’t 100% behind my PET scan, and assured me that my new immune system should handle the high EBV infection. However, Dr W just wanted to be sure – even though it’s likely nothing – but in his words from yesterday’s appointment, “I think it’s really important to do our due diligence and just get this checked.”
I agreed, because, well, if my body is dealing with PTLD, this is something I want to know.
So the PET scan will check my body for any enlarged lymph nodes, and we move on from there. Should any be found, the next step would be to biopsy said lymph node(s). After that, well, I’ll continue to take the advisement of my AVL & NIH Teams – but there are multiple courses of action, based on the results.
Results of my PET Scan: enlarged lymph nodes were discovered on both sides of my neck, likely due to my recent sinus infection and continued upper respiratory infection/virus/cold/thing. Thankfully, no further enlarged lymph nodes were discovered anywhere else in my body. The next course of action involves a potential ultra sound OR biopsy, but this is something I will discuss with Dr. W next week.
Thankfully, it is now 3 hours later (technically 3 days later), and I’m sitting in my favorite burger spot (sitting outside in the back at home, with 4 cats stretched out in the sun). I was hoping Kurt would be managing, but he’s not here until later. Rest assured, I’ve got a gym date with my friend on Friday (the workout was hard – thrusters & burpees, but we survived and then had a lovely coffee/breakfast date in the River Arts district, to make up for all those burpees). So I’m sitting in a booth at Juicy Lucy, sipping a hazy IPA and an amazing Cowboy bison burger has just arrived. Life isn’t so bad.
This past week (because really, it’s been a full week+ now) has been OK. I returned to my gym both Thursday and Friday; I love HEW (Hard Exercises Works), and am so thankful for my gym family. I wrote about this before my transplant, but in the weeks leading up to my hospitalization, I had to go through a series of tests, including a Pulmonary Function Test (PFT). The goal for everything was to establish a pre-transplant baseline. In 2018, I took my first PFT with the NIH and having just finished backpacking the John Muir Trail and running daily. I was in pretty decent shape and my PFT reflected that. My 2020 PFT blew that one out of the water, though, and the NIH Pulmonologists wanted to know what I had done differently; I told them that I joined HEW, in addition to continuing with my hiking & running. They were all impressed and commented that this was proof in the benefits of strength/HIIT/CrossFit training. I smiled and my lungs said thank you.
Anyway, both workouts were solid, tough but good. I was especially touched at the thoughtful care package the coaches & staff put together for me; likely the only time I will ever get ice cream and Twizzlers from anyone affiliated with working out and the fitness industry – so I had to laugh at that. But it was very meaningful. I’m thankful for my community, my HEW family.
After Thursday’s workout, I grabbed lunch at the Arboretum and especially loved walking through the Bonsai exhibit – just magic! Later, it was an easy walk in the woods.
Friday, rather than the Arboretum, I added a 10-ish mile hike through Bent Creek, my pack loaded down with extra water, doing what I can to get ready for a Yosemite backpacking trip mid-July. Bent Creek is such a wonderful nearby resource and every time I hike/run/walk through the lush forested trails, I’m thankful. Plus, there’s a good mix of technical and non-technical trails, so holding a solid pace for 10 miles is possible on the non-technical stuff (a tad over 3 hours for inquiring minds). Afterwards, the ice cream called my name.
The weekend was solid, in spite a major change in plans. Originally we were set to go car camping in Smokey Mountain National Park, but a 100% chance of rain due to the Tropical Storm churning in the Gulf and motoring it’s way inland gave me pause for thought. I’ve car camped in the rain and it’s not the most fun; as this is something I want to do for many years in the future with Andy (car camp, but not car camp in the rain), I figured it’s ok to be picky during less than stellar weather. When the precipitation started at 9 pm, I felt good about our choice; at 6 am Sunday, listening to the rain pound against the windows, I snuggled deeper under the covers and went back to sleep.
Anyway, Saturday was low key and we headed up the Blue Ridge Parkway for 50 minutes to Craggy Gardens for an easy hike through pine forests and rocky outcrops. We picnicked at a mostly empty area, sipping beers and solving the worlds’ problems and later hit up Hilman Brewing for dinner and another brew. It was just a really nice day with Andy.
Sunday started off rainy, but eventually the storm passed. I, however, was feeling more antsy, a combination of being cooped up and my body getting stronger. I felt restless, bored even; my thoughts turned inward and anxious. I felt as though I was missing out, some unnamed agitation in my psyche. And I felt this pull to just do something, to pack up, drive, move, wander – similar to what I would do while living in California a lifetime ago: throw a backpack in my trunk and drive to the Sierras, an open desert road through the Owens Valley and snow capped peaks on both sides stretching endlessly ahead, easing my restless spirit. Or hop on a flight to Seattle, seeking solace and refuge on a tiny island in the Puget Sound, safe from the rest of the world at large. The possibilities and promises were endless, and I found these trips soothing to my soul.
But how does one convey that?
I need to add: my life is here, with Andy and our kitties – and I’m really excited to start my graduate program this fall, and hopefully break ground on our home next spring. I’m excited to build our future together.
But there’s still a part of me that wonders what it would be like to live on this tiny island in the Puget Sound, seeking solace amongst the giant pines of the Pacific North West, an ancestral homeland I feel inexplicably pulled towards, a place that has always felt comforting and safe even in my darkest times. I suppose during those anxious moments, when I’m restless, bored, am slightly disappointed at not camping, and survived a stem cell transplant during a global pandemic – escaping to one of my favorite places in the entire world seems only natural.
I think this is probably pretty normal after going through something as life changing as a stem cell transplant, to question your place & direction. In the end, my life with and love for Andy is more important than a place I really really love, and I need to be mindful of all the amazing things/people/life/future I have here. But I also love travel, backpacking, high mountains and the Pacific NW, and there’s a part of me that wishes I were closer to this beautiful area – I’ve felt this since my first visit to Bainbridge Island, WA after racing Ironman Coeur d’Alene in 2009. I could barely walk after my race, and yet, I felt this insatiable longing to run and hike, exploring every nook of the island (which I did, to everyone’s horror). I felt myself come alive, full of joy. And throughout the years, it’s been the one place I’ve returned to the most. I can’t explain it, but this region breathes life back into me.
At first I wasn’t sure if I wanted to share this, just because Sunday was tough; however, what I was feeling had much less to do with my physical location, and more to do with my headspace. I think I struggled with a bit of anxiety around the idea that life is really short, and I’m fearful of not doing things or having experiences and/or living in places that matter to me. Transplant has exacerbated this life/location questioning, I think.
My therapist calls this “future tripping”. I believe she’s right.
Now that I’m getting further out from transplant and the chances of acute complications have (hopefully) passed, it makes sense that I would examine life, my needs and my wants. I don’t want to deny to myself how important the Pacific NW is, and over time build up resentment for not being there; just like I don’t want to take for granted the wonderful partner and life I have here. It’s totally a balance. And on a rainy Sunday, cooped up at home (by choice, I might add) – I just had an anxious moment and it was challenging to see all the awesomeness around me that I’m already living, even while all I wanted to do was pack up and retreat to a space that breathes life back into my soul. On Sunday, I did a lot of crying and I felt sad and stuck. So Sunday night after Andy had gone to bed, I pulled out one of my many area hiking maps and picked a route that looked full of promise. And afterwards, I hugged him tightly in bed, whispering I’m sorry through tears.
Spoiler Alert: Monday’s hike WAS incredible, a stunning 18 mile route through the Shining Rock Wilderness.
In moments like this, I just need to admit that there are special places that resonate deep within my soul, and I’m grateful for their presence. I’m also grateful for the love of a wonderful man, and the life we are building together. And the beautiful thing about the future is that we just don’t know what it holds, sort of like the promise of a backpack in the trunk and an open road stretching endlessly ahead. Or a tiny island in the Puget Sound, providing the promise of safe harbors and endless breaths for my soul.
As I hinted in my post, physically I’m still dealing with a bit of sinus congestion. I’ve finished a 10-day course of antibiotics, Augmentin, and that did the trick on the bacterial infection bit. But I’m still a bit congested, so too is Andy. I think part of it may be the fact that we are slowly re-emerging in our post-COVID-19 world; not only did I have a stem cell transplant, but I’ve also worn a face mask for the past year – just as most of us did (face mask, not transplant). Getting sick or catching a cold after social distancing for so long makes sense. It sucks, but it’s a thing. Eventually, this too shall pass.
The rest of my body is doing alright, including my skin, eyes and hair. I still use my rosacea medicine at least once per day, take my eye drops at least once per day, and my hair is growing. I’ll still catch glimpses of myself in the mirror and have to do a double take…this is me, yes, but it’s not the me with the long and wild and unkempt hair from before. Over the past week or two, I’ve found myself really missing my long hair. I suppose that’s just another sign though: if I can focus on something like my hair, as opposed to Graft vs Host, or post-transplant complications, then I’m really lucky.
And now, it’s Friday afternoon. This has truly been the Post That Never Ends, and there’s a small part of me that figures I might as well start my Monday-today post right now. Expect it sometime Sunday. Congratulations for making it this far & for sticking with it! I hope that wherever you are, all is well!
I share your love of the Pacific NW. So glad we will be there together in a few weeks. My memories of it go back to 1945 when I lived with my grandparents in Ballard. We could see Mt. Rainier through the front window.