I will start this post with a warning that it probably won't be uplifting, as it's been a pretty hellish few weeks. But I will also say Ryan is doing alright at the moment. My last post was on Saturday, August 28, and the Tuesday evening after that, he had some brief neurological symptoms. He couldn't control his hand, and his speech was slurred for about 10 minutes. Since it resolved so quickly, and with the help of advice from his two older brothers with much more medical knowledge than me, we decided not to rush him anywhere. Then, on Thursday, September 2, around 11am, he started slurring his words again. He was already scheduled for a clinic visit that afternoon to check his counts, so when I called at first they said to wait for his appointment. But within about 10 minutes, he completely lost his ability to speak, so I called again and they directed us to come into the ER (despite really not wanting us to go to the ER because his chance of exposure down there is much higher).
We were in the ER for 7 hours, during which Ryan didn't speak a single word and became completely disoriented. He couldn't use his phone, he couldn't write anything, and he couldn't respond to questions or prompts. He had a CT scan that was clear, and then a fast MRI that showed he had neurotoxicity from methotrexate, one of the main chemo drugs he has received through the duration of his treatment. I'll jump to the punchline, which is that for some weird reason, Robitussin (yes, cough syrup) is the antidote to that side effect. So Ryan was admitted on Thursday night and by Friday morning he was speaking again. That said, I do think it's worth telling the story of our ER experience in case it might give some insight to someone down the line.
If I were to come up with the perfect setting to make someone go absolutely insane, it would be a hospital emergency room. That's not to say I don't deeply appreciate all of the hospital staff and the medical care they give, but I've never had an ER experience that wasn't painfully long and frustrating. The beeping, the endless repeating yourself, and the waiting, waiting, waiting all makes it totally maddening. On this particular day, they took him back right away - the clinic had called ahead to tell them we were coming - but when I was checking him in, his chart wasn't coming up. When they put his name in, the computer was showing that he had never visited Riley or any IU hospitals before. You can imagine how frustrating it was for multiple people to ask if he had ever been there before when he has visited Riley at least once a week for ten months. This continued for a couple of hours, which made the questions even more never-ending than usual because they were asking me things that should have been answered by abundant records (think - What medicines is he on? What treatment has he received? Does he have any medical history we should know about?). On top of this, Riley is a teaching hospital, so there are a million people everywhere, all of them talking and asking the same questions. Again, I appreciate the medical care and the value of hands-on learning, but it can be extremely unnerving to deal with interns who literally just started this summer and haven't quite mastered the ability to conceal their stress levels or talk to us in any sort of organized fashion.
At one point I called the nurse out of desperation because Ryan kept gagging (he couldn't swallow his own saliva) and acting agitated. A new nurse came in (the prior nurse had not told us they were leaving) and asked what was going on. I explained that I needed help and I couldn't figure out what was wrong because he couldn't speak, and she asked, "Is the speaking thing new?" Now I know she had just gotten there, but how are you supposed to provide informed care if you don't even read the chart before you walk into the room, enough to know the sole reason the patient is there in the first place? We had been there for at least 4 hours at this point, so I think she could see the steam coming out of my ears.
All of this added to the stress and fear, along with the fact that no one was comforting me at all. Even when they figured out what was wrong, all the neurologist said was, "We're seeing changes in his brain caused by the methotrexate." As someone with no medical background, the questions immediately running through my head were of course, "Is he going to have permanent brain damage? Is he going to speak again? Does he even know what's going on right now? How is this going to impact his longterm treatment plan?" I honestly don't think I felt relieved at all until we were settled up on his usual hematology-oncology floor and they told us they see this type of thing enough not to be too concerned about it, and they had no reason to believe the effects would be longterm.
Suffice it to say, I freaking hate the ER. Ryan doesn't remember much of anything from that day, lucky for him. For me, it was extremely traumatizing and also a scary reminder of this time last year, when he first got sick. His first symptoms from the Leukemia were stroke symptoms - including aphasia - so there's already quite a bit of trauma and anxiety associated with that.
Thankfully, Ryan's brothers, Marc and Tim, were able to be with him in the hospital for the weekend and encouraged me to take a much-needed mental break. Anyone who has been in a situation like this before knows that caregiver burnout is a very real thing, and it's hard to take care of yourself with the constant ups and downs.
So Ryan ended up coming home on Sunday, September 5, and has continued taking Robitussin twice a day until further notice. He went into the clinic on Tuesday and received his last chemo dose of this phase - Hallelujah 🙌 - and we hoped he would be on the up and up going forward.
Unfortunately, (see, I told you this wouldn't be uplifting) we ended up back in the ER yesterday (Friday... why does it seem like he always gets admitted on weekends?!) because he spiked a fever that got all the way up to 103.9. His counts are all extremely low right now, meaning his immune system doesn't have much to fight with. His blood pressure also dropped quite a bit, so last night they decided to admit him to the ICU instead of the hem-onc unit. They explained that this is just because the ICU nurses are more familiar with the blood pressure medicine he needs, and the hem-onc nurses wouldn't be comfortable managing that. This morning his fever has gone down and his blood pressure has improved. Even if both of those stay at baseline, he will remain admitted so that they can continue administering antibiotics around the clock to fight whatever potential infection might be causing these symptoms. They are currently weaning him off of the blood pressure medicine with the goal of moving him to the hem-onc unit.
So, all in all, it's been a rough two weeks. I'm hopeful that this is one of the last major hurdles we have to overcome before he starts feeling better, but it seems like every time I say something like that the universe has other plans. I asked Ryan if there was anything he wanted me to include in this about how he's feeling, and he just said, "Exhausted." Yep, that about sums it up.
Now that I have sufficiently depressed anyone who has read this far, I'll leave you with some good news... in the middle of all of this craziness, Ryan accepted a new job offer! I'll let him share more about that when he's able, but right now we need everyone to send as much healing energy and good juju as possible so that he can recover and start work (remotely) in a few weeks.
Thank you for reading, praying, and supporting us through this mess. We appreciate you all!