Not So Smooth Sailing

It's been almost two months since Ryan's last update, and it turns out maintenance has been more of a mixed bag than we had hoped. We had a much more normal holiday season than last year, spending time celebrating with friends and both of our families, which was very good for the soul. Ryan finished radiation and started on the daily oral chemo and was feeling good for most of December. However, right before Christmas he got sick and spent the majority of our time in Louisville in bed sleeping. The timing of this along with the Omicron surge caused my stress levels to skyrocket for several weeks.

He was covid negative but definitely had some kind of bad cold, and we ended up realizing his blood counts had dropped significantly when he woke up one morning with a nose bleed that wouldn't stop, prompting us to drive back to Indy a day early so that he could get platelet infusions at the clinic (the alternative would have been to take him to an ER in Louisville, which is pretty much the last place he needs to be right now given the covid situation). The drop in his counts meant he had to stop taking the chemo pills for a while, but the team at Riley assured us that this is fairly normal at the beginning of maintenance when his body is still bouncing back from a year of being put through hell. It will take a few tries to figure out the right dose for the chemo; ideally they will be able to keep his counts somewhat stable, without such dramatic dips (although still much lower than the average person).  

I will pause here to ask a favor of all of you: please donate blood if you can. If I had to guess, I would say Ryan has probably had around 100 red blood cell and platelet transfusions over the course of his treatment. If you imagine that much blood needed for just one person, and then picture how many people in our hospital systems also need blood, you can see how quickly reserves of blood are depleted. Add that to the fact that donations have plummeted during covid times (not to mention that many people - namely gay men - are actually still not allowed to donate due to extremely discriminatory and irrational policies created during the AIDS crisis), and that explains why the Red Cross recently announced the most severe national blood crisis in ten years. So please, find a local donation center or drive near you and donate ASAP - and then keep donating! It's really easy and you get the bonus of free snacks! The last thing healthcare workers and patients need to be dealing with right now is worrying about the availability of lifesaving transfusions.

So anyway, while the technical maintenance schedule would only have Ryan coming into the clinic once a month, he has actually been in at least once, sometimes twice, every week this month. And with the spike in covid cases, we have gone back to mostly laying low and staying home. Anyone else feeling déjà vu? I know we are all so burnt out and sick of this freaking pandemic. Trust me, we are exhausted from the constant risk analysis, second guessing and anxiety. I don't blame anyone who is fully vaccinated and boosted for living their life. But I do ask that we try not to lose sight of our compassion for our immunocompromised neighbors and for all the healthcare workers who are at the end of their rope. Be kind, wear a good mask in public, and understand that there are 7 million immunocompromised adults in the U.S. who don't have the freedom to be careless right now - Ryan included.

I do have some good news to share on the covid front, though. Two weeks ago, he received the Evusheld injections, which just received emergency use authorization in December and are made specifically for immunocompromised individuals for whom the covid vaccines might not have given as much protection as the average person. It is a preventative treatment for covid that can give added protection for up to six months, and if you haven't heard of it yet it's probably because there are very, very few doses available right now. It's extremely hard to come by, so we feel really lucky that Ryan was able to secure a dose (perhaps because I found an article on it back in early December that Ryan shared with his doctor before it was authorized, so she had it on her radar as soon as it became available). Hopefully the U.S. government will continue acquiring many more doses, because this could be a tool to help people like Ryan get back to some semblance of normalcy.

That being said, covid isn't the only thing that can knock you down when your immune system has taken a hit. Ryan picked up what we are assuming is a stomach bug that landed him in the hospital for four days this week because he couldn't eat or drink anything. His counts were fine this time, but they kept him on fluids to make sure he was getting nutrients until he could start eating and drinking on his own again. He came home on Thursday and has been taking it easy since then. I have to say, after everything we've been through, it's unsettling to have a hospital stay and not know exactly what the problem is (they tested him for a range of viruses and they all came up negative). It seems like every time there hasn't been an obvious answer for his sickness, it's ended up being something major, so we've both felt anxious and frustrated. We thought these days were behind us.

Last January, I wrote about being afraid to write anything into my planner after having so many plans ruined. This year, I am willing myself to make goals and plan things to look forward to, even though it's scary. Maybe this phase hasn't been as easy as we hoped, but I know there are better days ahead. Ryan is resilient, and he has a fantastic team looking out for him. And we have all of you! Thank you for continuing to pray for us and send positive energy our way. We're grateful for you.

We felt the holiday spirit at the Indianapolis Symphony Orchestra's Yuletide Celebration - so happy to return to some fun Christmas traditions!
Ryan got to ring the bell after his last day of radiation. He's holding the mesh mask he had to wear over his head during the treatments. 
We got to enjoy NYE with a small group of friends - very happy to not be on Zoom this year! 

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