Days +223, +224 & +225, Monday, Tuesday & Wednesday

Photo of the Day (Monday): Monster. Not pictured – the mouse under the dryer.
Photo of the Day (Tuesday): there’s something so comforting in baking. You find a recipe, measure the ingredients, follow directions (mostly), maybe listen to a podcast in the background, do your best, sample and bam! Lemmon Bars. For me, baking is meditative, meaning I only focus on the task at hand, not worrying about what was, what is and what may come to pass. In the past when I’ve gotten sick, finding a healthy outlet was a challenge, as many of my outlets involved physical activity- running, the gym or my favorite, spending time on a trail. Over the past 10 years/pre-transplant, I had to learn to be OK with being still when I got sick – not running or forcing a workout or anything- just letting my body heal. For someone who raced triathlon & running at a high level, that was really tough, especially as I didn’t understand why my body was sick in the first place. And it was also challenging academically & professionally, frequent illness without a “why”. I’m thankful for the understanding peers & employers, family and friends, support groups & excellent therapists in my life – you helped the hard and scary times be more bearable, gave me tools to help cope and a shoulder to lean on when I couldn’t stand. There was a lot of sadness in those pre-transplant years – I suppose that’s why getting sick now stirs up these memories. So there you go – baking helps me to feel better, allows me to focus on the task at hand while creating something (hopefully) yummy on the other end. It has a predictable start, middle & end – and for me, living with an illness that has been anything but predictable, and now in my post-transplant phase of this journey, a little predictability can and does go a long way.
Photo of the Day (Wednesday): I told myself it would be ok to use paper towels. But then I remembered how terrible my tush felt in the hospital with the terrible toilet paper – and I quickly went upstairs to grab a box of Puffs plus lotion. (Indeed!)

I’ve been fiddling around with my site, Safari and Firefox for the past 20 minutes, and at this point, its just annoying. The short long short of things – I can’t edit my posts in Safari after installing Mac OS Big Sur (annoying), and Firefox allows me to write, but for some reason I can’t see any of the image captions (again, annoying)….so for Tuesday’s picture, I methodically typed everything out on my phone, uploaded it and then opened my browser. It’s such a first world problem annoyance and I get that – but that’s where I’m at. Moving on –

It just stormed again – torrents of rain and a few good cracks of thunder. I’m grateful to be inside and off any high mountain ridge. Monster agrees, as the rain pulled her away from the mouse under the dryer.

Afternoon thunderstorms

So, it happened.

I got sick.

I know this is something that every Stem Cell Transplant person deals with eventually, and to be honest, I’ve been really fortunate. The mask mandates during COVID, social distancing, etc actually helped prevent transmission of any sort of illness (not just COVID), so there was a huge silver lining in that I wasn’t sick earlier. And I still wear masks in stores, medical offices and in areas they are mandated and mostly social distance when I can; however, last weekend during our pool tournament, I didn’t. I was exposed to more people, and unfortunately, someone was sick.

On the one hand, I’m shaking my head – I feel like an idiot. But I can’t go back and change what already is, so there’s no point in berating myself for that one. On the other hand, I’ve been vaccinated against COVID-19 and 23 strains of pneumonia (and yes, I still have a lot of vaccines to go) – and according to my Team, have a young, but normal functioning immune system. And after a year of face masking/social distancing/transplanting, I just wanted to feel normal in a social setting for once…to be recognized. Even last night at regular pool league, I had someone come up to me and say that they didn’t realize it was me because I looked totally different from a previous Facebook profile picture. They thought I was taller and had longer hair.

Yes on the hair, negative Ghostrider on the height. But thank you?

And maybe that’s a part of this, too. Sure, pool (billiards not swimming) isn’t my thing, and I’m there because it’s something Andy loves – it’s one of the ways in which I participate in our relationship. But through the game, I’ve met a lot of AWESOME people, kind, really good folks who I’ve enjoyed getting to know. Walking into Fat Cats a year later, when the US was re-opening and after my Stem Cell Transplant, there were a lot of people that just didn’t recognize me. Many of us wore masks, my hair was totally different, I had lost some weight and it was just awkward because people I had known before COVID, before my transplant, just didn’t recognize me at all. And it was the same at my gym, where a few members I’d know before re-introduced themselves, not realizing it was me.

So here I am. On the couch, Puffs Plus Lotion (Indeed!) next to me, and waiting to hear back from Dr. W after speaking with the triage nurse.

On a deeper level, I think the mask thing is something I’m going to grapple with, unless my Team tells me to wear a mask at all times. I want to be safe for my own health, I want to do the kind thing for other people and help prevent them from getting sick, but I also don’t want to live the rest of my life in fear of getting sick. And in +7 months post-transplant, I’m not sure where that line is – should I still always wear a mask or is it OK to not wear a mask? Last week when I reached out to Daniele/NIH about hiking longer distances, she talked about balance and enjoyment, doing the things that are meaningful and fulfilling. I think the same is true for living my life in general, although hiking is very different than mask wearing. At some point, I need to understand that my immune system is working towards becoming normal and I need to be OK with doing Life accordingly.

It’s just really scary when I’ve spent an entire lifetime battling illness and bone marrow failure, blood clots and opportunistic infections, have gone through a stem cell transplant, and lived during COVID to suddenly just shift gears and change course with my mentality. And then when I did – not wear a mask – I’m sick.

Prior to my transplant, I spent 2 years on daily antibiotics (Augmentin), which helped prevent sinus infections, pneumonia and the pneumococcal-type bacterial infections that historically, nearly did me in. But now I’m here, not taking Augmentin, and maybe my new immune system will respond? Maybe my Team will recommend a culture, antibiotics, both or none? The point is – I just don’t know. Perhaps that’s one of the reasons I love baking so much – I have the privilege of following a recipe and creating a tangible end result. And in a world with a lot of unknowns, this can be a beautifully comforting thing.

Aside from getting sick, my week has been OK. Monday was low-key, although I felt good enough to do a really challenging workout at HEW, which I’m still sore from today. I was late to pool league which was fine, but only because I was concerned for the mouse, hiding under the dryer. Thankfully all was well for the little guy, but the cats remain curious. Monday night pool league involved another team tie, and I lost narrowly to a skill level 5, but had a lot of fun trying. Going up to the table was freeing, in the sense that I had nothing to loose because no one expected me to win, including myself – so I just had fun, laughed, made some shots and missed more. I kept that same mentality for Tuesday night’s match-up against a skill level 4, except this time got a few good rolls in my favor and actually won. It will never happen again, so that’s cool.

Monster bringing BB & WB into a life of crime

My Tuesday appointment & labs with Dr. W were good, although EBV is still high and my counts were down a tad from last week. I mentioned feeling like I was getting sick to Dr. W, who immediately asked if I wanted a chest x-ray. I laughed and said that I wasn’t there yet – but I also thanked him for being so vigilant about my health. He checked for enlarged lymph nodes (none to be found) and we talked about my symptoms, of which I really had none except for some nasal drip, fatigue and that feeling of coming down with something. Unhelpfully, my body decided to start producing sputum Tuesday night and today, Wednesday. I also pointed out a few small red dot-like things on my stomach and he laughed and said those were my hair follicles, likely meaning that small hairs were beginning to grow again.

After my appointment I baked Ina Garten’s Lemon Bars. They were delicious!

Why Ina Garten? Because I’ve always loved her recipes and anyone who can do this, is awesome in my book:

And now, onto today – Wednesday. I’ve texted the NIH, spoke with the triage nurse at Dr. W’s and am waiting for a callback about what to do next. I’m thinking sinus infection based on the yellow snot, sinus pressure, teeth & ear pain, swollen glands, and general fatigue. I’ve drank my weight in tea, Throat Coat being my bag of choice. Its rained – hard rainstorms – twice, and even thundered. I’ve been invited to practice pool because the 8-Ball Team that I’m on qualified for the World Pool Qualifier Tournament (last weekend was 9-Ball), but given how I feel, I’ll likely take a rain check. If anything, I’ll aim for a neighborhood walk between thunderstorms. I’ve largely spent the day in my comfy clothes on the couch, a good book, laptop and cat by my side. In spite of being sick, I also recognize how incredibly fortunate I am as well.

So that’s all I’ve got. Currently waiting for a doctor’s call and getting ready to either read or continue HBO’s Mare of Easttown. And make more tea, of course. I’m a few chapters into Mirna Valerio’s excellent “A Beautiful Work in Progress”, and 40-ish minutes into Episode 1 of MoE. It’s a toss-up folks. Regardless, I hope that wherever you are, you are happy, healthy and staying safe. Thanks as always for reading!

  1. So sorry to learn about the sinus infection. So happy about your new immune system!❤️ Terrible Monster is bringing 2 mostly Innocent kitties into a life of crime. She needs to know that crime does not pay. Hopefully, the little mouse won’t have a heart attack.


  2. I am hoping whatever bug you have disappears quickly so you will feel better and so you won’t worry!


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