Day +88, Saturday

Photo of the Day: Reminiscing with my good friend Janette as she shares a picture of me from 3 years ago, at Pulmonology check-in. When I was referred to Johns Hopkins February 2018 (hopefully to discover what was going on with my body) Janette went to nearly every appointment with me. We drove from Fredericksburg/Stafford, VA up the clogged 95 corridor to Baltimore, a one-way trip clocking 90+ minutes in good traffic, (an anomaly in DC) and ultimately back. They were long days. Most trips involved multiple appointments, plenty of time in the car, passing time in waiting rooms, and speaking with kind and inquisitive doctors. Janette took notes, asked questions (she cleared it with me first), and was present for me in a way I no longer thought I deserved. Since she was keeping me company, I supplied endless coffee and food, we sang (or tried to sing) Eminem’s “Beautiful” and practiced our DBT Skills (we were taking a weekly course together). We challenged and supported each other; my marriage had long since fallen apart – she held space for my tears and anger while also challenging me to consider my own voice, needs and future. I would not be the person I am today without Janette. In May, I received my GATA2 diagnosis, left my ex in July and she was with me that same month when I first spoke with Cindy at the NIH about Dr. Holland’s GATA2 Protocol (Study). And perhaps in a most beautiful twist of fate, she later introduced me to Andy. Though the ups, downs, highs and lows, my life is better for having Janette as my friend.

This morning it wasn’t just soreness from a workout, but my BK infection was still really bothering me. I doubled my Pyridium dose and popped two Tylenol, hoping they would manage my pain. It worked, sort of.

This is just me, in the process of getting ready to leave the apartment. One day my face will be less puffy and I’ll have hair. The compression socks are tough to pull on – especially when I’m sore – but they provide an extra layer of insulation while keeping my ankles somewhat svelte, so I just deal with it. Whenever I leave the apartment, I try to make sure I’ve got extra lotions for my dry dry skin, and tons of layers to survive the cold, so packing and organizing is key. I forgot my chapstick once – nightmare. But yes, at Day +88, this is just me, getting ready.

The goal was to head down to Fredericksburg, VA, near my old stomping grounds when I lived in Stafford and my ex was stationed in Quantico. A windchill in the teens pretty much meant that Mom and I spent minimal time walking outside and rather than pay admission to my beloved Prince William Forest Park, I figured that a quick lap of Government Island would suffice. The wind screaming off the water of Aquia Creek set my teeth on edge; we walked quickly.

Bright sun. And cold fucking temps.

Post walk, we made the 25 minute drive down the 1 (otherwise known as “Jefferson Davis” Highway…yes, it is named after the president of the Confederacy. When I think about that, it makes me both angry and want to puke). I cranked the heat and after getting primo parking on Caroline Street, we dashed into Italian Station (nee Stallion). I loved seeing my friends, Janette and Kelsea. They were both pillars of strength for me during a very vulnerable time and I can never thank them enough for their support, wisdom, love and kindness. Plus, we just had fun together – at a dark time in my life, they helped me recall what it was to laugh, joke around and be accepted.

Its scary in the time of COVID to be so close to others – add it a Stem Cell Transplant and phew! Both girls were incredibly respectful, and I appreciated their understanding and support.

Later, Mom and I picked up Pho (me) and a Bento Box (Mom) and made the 60 minute drive back up to Bethesda. I chatted with Andy and caught the newest episode of Season 2 “Discovery of Witches.” My Pho was wonderful, although I boiled the broth and noodles and everything else quite zealously – basically the noodles turned more mushy as they absorbed the broth. But it was boiled and that was my main concern. It was also my first take-out meal since…since….October 2020, before my transplant. Food-borne illness is a serious concern in transplant folks, so eating out is not encouraged (especially in the time of COVID), tonight was a special treat.

I ended the 23rd by knocking out my 30 pushups, with about 1 minute to spare. But it counts, my body is still sore and I’m beat. So with that, I’ll bid you a Goodnight!

Caroline Street, Fredericksburg, from Italian Station looking NE

  1. It was great that you were with your old friends in Virginia. I’m envious of you having pho. It’s one of my favorites.
    Your exercises have influenced me to do some as well. I started today with situps and will do them daily. Thank you for being such a good influence.

    Love, Dad


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