Day 15 and 16

Trigger warning: discussions surrounding bodily fluids so if you’re not comfortable with that, move along.

Thursday, June 13, 2024 – Day 15

Today was an okay day. A lot of the dead flesh in my mouth sloughed off this morning. It’s great because it means my body is healing, but unfortunately, that also means the naked flesh beneath was exposed, making it very very tender. Luckily, I was able to push through and eat a yogurt this morning, a spoonful of pureed carrots, a spoonful of macaroni and cheese and some rice and beans. It’s the first time in almost 2 weeks that I’ve eaten any food. I’ll take it as a good sign that I am having hunger cravings, mostly my mom’s cooking.

I’ve also still been experiencing diarrhea. I soiled myself a few times today, and I realized how traumatized I have been from my 2022 experience.

Don’t get me wrong. I am so happy about my engraftment, but when setbacks like soiling myself happens, I realize I have a long way to go and I’m sad about it. I also realized how my norovirus hospitalization in March 2022 really traumatized me and my whole family. For those unaware, in 2022, I had an emergency cholecystectomy in January at my brother’s hospital, a bronchoscopy in February, a sinus revision surgery in March, and somewhere in all of that, contracted norovirus, was hospitalized for >30 days at University of Washington and lost 30 pound (>30% of my body weight). At my worst, I was going to the bathroom 15+ times a day, and they were giving me 5+ liters of fluid to try and keep up with the losses. I was 85 pounds when I left the hospital. There were conversations about death at this point (unbeknownst to me) because there was a real fear that I’d never be able to clear it on my own given my non-functioning immune system. We even thought about doing a T cell therapy clinical trial at the NIH (but the protocol wasn’t quite approved yet so the timing may not have worked out). Miraculously, I did clear the norovirus with the help of drinking immunoglobulin (yes – highly off-label), but I was still stooling 6+ times a day and for the next 2 years, it was challenging to control. We attributed it to bile acid malabsorption for a while from my removed gallbladder, then perhaps some level of autoimmune inflammation in my gut. But during this time, I had accidents in public and I would have to pack extra clothes and paper towels in each car. I would joke about poop to my friends, but it honestly was incredibly anxiety inducing to leave my house, not knowing if I’d have an accident. All of my community were so incredibly supportive, so I know it was anxiety that I brought on by myself, but I think just having to live this way made me really sad. I am kind of surprised at myself too though because I went back to work full time in August 2022. In retrospect, the additional stressors of working probably wasn’t the best for my health, and I do think I probably pushed myself too hard (whether that’s my own doing or the additional pressures from work at the time or both), but mentally, I wanted to just feel “normal” again because it had been so long since I had felt that.

Today was also Tonya’s birthday. She is the NP that has been taking care of me the entire time I’ve been inpatient. She’s a boss. We got her a raspberry white chocolate bundt cake.

Friday, June 14, 2024 – Day 16

Today I attempted to transition from tube feedings to some solid food. I was able to get down a Greek yogurt for breakfast in the morning. It did hurt to swallow, but it is SO much better than last week so I’d take that as a win.

I also started transitioning a lot of my medications from tube feedings and IV to oral pills or oral suspensions. I’m able to swallow some smaller pills, but the bigger pills we’ve saved for later.

For lunch, I had a few spoonfuls of pureed carrots and mashed potatoes. The sad thing is that even though food smells like food, it doesn’t taste like what it’s supposed to taste like. Everything has a metallic taste so it’s not appetizing and I don’t necessarily want to eat it, but food is medicine at this point.

At dinner, I had two pieces of ravioli, some rice and beans, and some mashed sweet potatoes. I felt like I had made such progress today, but an hour after I had eaten, I vomited everything up.

There’s a lot of disappointment in the healing process. I want to think that everything is linearly improving, but I need to remember to show myself grace that even though sometimes it’s one step forward, two steps back, it’s still an improvement overall.

Today is also the first day that I transitioned from two full IV poles to one. I also stopped the pain PCA so down from 3 pumps to 2 pumps on my IV pole. And the biggest win was that I even was able to disconnect everything for a good night’s rest!

Friday is also the day the snack lady comes by. It’s my mom’s favorite day of the week. Look at how cute she is.