Rough Days

I have so many things running through my mind right now, I don't even know where to start. Unfortunately, this post will probably end up as unorganized as those racing thoughts. But I think I need to get it out on "paper."

I never expected this to be easy for Jake. I think I just hoped it based on how well he tolerated the first round. Each round proves harder and harder, though, and I'm constantly surprised at how strong I'm not. It's no secret that I've been nervous for the transplant round since we realized that was the road we needed to take, and I can't say it's getting any better. I really feel that I'm being tested beyond what I was prepared for, and I'm struggling to maintain a sense of feeling grounded.

Radiation began Jan 13th, and lasted for 6 days. Nausea hit hard within a couple of hours of his first round. Each day's side effects got progressively worse, and the doctors had a hard time getting his nausea under control. (Side note: It's been interesting to see the use of psych meds in nausea control. From a psych nurse perspective, it really threw me off). On Friday, he finally had a day that was much more tolerable than days past.

Following radiation, he had 2 days of chemo. Jake was quite nervous for those days, but they turned out to be a bit of a reprieve and those 2 days he was able to spend doing things he enjoys, such as working on dj mixes and playing video games. It was great to see him doing so much better. But that relief was short-lived.

This morning, he was started on an anti-rejection medication, and it really messed with him. His blood pressure went from normal, to 190/100, to 80/42. His heart rate spiked up to the 130's. He had tremors and a high temperature, and he was really reacting poorly to this medication. After nearly an entire day of trying to fix these problems, his providers finally decided that the best course of action is to transfer him to the ICU.

I can't begin to describe the things that start going through your mind when this kind of information is received. I've been struggling with the poor prognosis and long-term survival rates as it is, and then to have him transferred to a higher level of care was incredibly stressful and scary. I took comfort in the fact, however, that I was able to call and speak to Jake through all of this, so I knew that while he was talking he was mostly ok.

Jake remains in the ICU for tonight, and will likely stay there for the majority of the day tomorrow. He is stable now with a BP of about 110/70 and his heart rate is hovering between 100-110 (which is fairly normal for him). His temperature is also back to normal. So he's looking really good for tonight. He receives another dose of the anti-rejection medication, and so they'll monitor him more closely due to the reaction that he had today. We're hoping that he'll be back in his room on BMT tomorrow evening. Transplant is still on for Wednesday, so that's another thing to look forward to. We were hoping that transplant would be the start of the downhill part, but we have learned that the week after transplant tends to be the hardest. We are told that we can look forward to more nausea, mouth sores, body aches, fevers, and all kinds of fun things. I'm really not looking forward to the next week to week-and-a-half of hell.

I really wish Jake didn't have to go through this all. It's hard to watch and know that there's really nothing I can do for him. I just hope that once it's done, we'll be able to have a relatively normal life together, and experience the things we talk about so much. I miss him deeply while he's gone, and am hoping the next 5 or so weeks go by quickly.

Thank you to all of you who were willing to include Jake in your prayers when he requested it; I know those prayers and your faith helped him through this and have peace tonight.