An Unexpected Haiatus

On Sunday, June 23, I went into the hospital for symptoms associated with dehydration. I just got home Friday, July 12. Nearly 3 full weeks of my life are now gone, never to be gotten back. As hard as those weeks were on me and my family, Noelle took the brunt of it squarely on the chin. To be perfectly honest, I don't even remember half of my stay. My liver and kidney functions were all screwed up, which caused me a lot of issues, including coherence and other issues as my body tried to sort through medications that just weren't filtering properly through my body.

What I Missed:
I missed my 41st birthday. I have vague recollections of my family members - many of them from out of town - coming into the hospital to wish me well. I missed the donor drive I had scheduled for that day. My goal had been to add at least 100 people to the National Marrow Donor Program's Be The Match Registry. I think I ended up coming in somewhere between 70 and 80. I still need to get "official" numbers from Trina, the woman from the NMDP who helped with the drive. Additionally, there are others who registered - or are still in the registry process - who need to be added to those "official" numbers. For example, one of my nurses who attended to my needs in the hospital over the past couple weeks got to talking to me about the drive, asking me how it went. I told her I didn't have official numbers, but that my understanding was that it went well. She told me that she was kind of ashamed that she wasn't on the registry yet, given what she does and the patients with whom she works. I told her she could still register - that it would never be too late. That night, during the duration of her shift, she and my Nurse's Aide for the night both got on the program's website and registered for their kits to be sent to them. I don't know if they went through my portal so they could automatically be logged as "my" enrollees or not. I'm just so glad they got off of the schneide, so to speak, and did what they should. There are others who emailed me to let me know that they had registered. There are several in California who joined at local drives or registered on line and had their kits mailed to them. So, it's going to be tough to know "official" numbers, but considering all things, I'd say that the drive was a success. According to my helper from the NMDP, between those that showed up in person that day and those who registered on line, we hit 119!!! I'm so, so happy!

I missed a family reunion. Nearly 30 family members from around the country descended on Taylorsville for a few days and I missed it all. I wish I had been able to participate. I love my family. Our next reunion of this scope will probably be some time a few more years from now, after my parents return from their mission. They'll be moving out here to Utah some time next year, then likely leaving around the end of the year for who-knows-how-long, probably some time between one and two years. Our next family reunion will follow their return from their field of labor.

What Passed Me By:
A lot. I went through a lot, and I mean A LOT of tests on various body systems. My liver and kidneys were really messed up, and so there were multiple tests and re-tests on those and related systems. Noelle could probably enumerate and estimate the total number of tests I went through. I'm pretty sure I don't even remember half of the tests they ran me through. I remember one MRI, because I HATED it. It took forever. I was very uncomfortable throughout the entire thing, and Noelle was right there. I was aware of how uncomfortable she was, which made it worse.

Several Days of Only Partial Coherence. There were many days of little-to-no coherence or awareness of my situation. There were days when Noelle did what she could to communicate with me, with little to no responsiveness coming back from me. We tried "John, squeeze my hand if..."There were days when I supposedly was lucid for an hour or so at a time, but I don't remember those times.

What I Remember:
There were periods of time when I was coherent and able to understand what was going on around me, though my ability to participate in any conversations about it was severely limited. Those times were very frustrating.

I recall some visits from family, friends, neighbors, though the content of those conversations is spotty, at best.

My coherence began coming back in earnest last Friday and Saturday. I had begun working with the folks in Physical Therapy on basic things like walking. I remember the first time going out with them to walk the halls on Friday I had such a hard time just keeping my walker going straight. I kept running one of the PT guys into the wall. I had developed stooped shoulders and a mean forward lean which they worked really hard to correct. Saturday was when the physical therapy started to really take its effect. I began to respond well to the exercises and walking. I will never look again at the people in the halls of East Eight who are struggling to walk the same way. In my various stays, I've frequently lapped my associates walking the halls and wondered what was making it so hard for them. I never realized just how bad things can get. There I was last weekend, doing everything I could to walk a single lap and keep my walker going straight and not having a good time of it. My issues weren't caused by my cancer. My issues were caused by a body that was struggling to rid itself of toxins and clear medications that had been in my system for weeks, though none of those medications had been added to my system for weeks.

Last Saturday morning was the first day I remember waking up and feeling the beginnings of healing. Interestingly, Noelle had reached the end of her rope Saturday morning. She tells me that on her way to the hospital that day, she had a very frank conversation with our Father in Heaven, telling Him that she was done and that she needed His help with me. Little did she know that the answer to that plea had already begun to be fulfilled in how I felt when I woke up. She got to the hospital to learn that I had been talking and making sense for the first time in a while. By Sunday, I had set the goal for me to be out of the hospital by the end of the week. Noelle thought my goal was a bit too aggressive, but I knew I could do it. Since then, my head has continued to clear every day, and my abilities to communicate clearly and effectively have improved every day as well. I still have some trouble putting words together or holding a thought in my head for very long, but every day is better and we'll continue making strides.

Now it's time to begin catching up on my life. I have a lot of time to spend with my kids and wife. I've got about five or six weeks before my kids go back to school, and want to be sure to spend lots of time with them before that starts back up. Today is about day 47, post-transplant, which means we're about 1/2-way to a pivotal bone marrow biopsy and other tests that will show us how effective the transplant has been. That's something I'm nervous about, but there's nothing I can do about it at this point, so I just wait. Next week Thursday through Saturday, I'll have a visit from "the guys," which will be so good to have. They were last out here in March, with snow on the ground. It'll be good for them to see/experience Utah in warmer weather. We'll go back up to Silver Lake and walk around it, which we weren't able to do in the winter with six feet of snow covering the lake. I'm happy to be home and feeling stronger every day. This post may not have the best "flow" of any I've ever written, but it gets the gist of things down. Future posts will likely (hopefully) be more like me and my typical style of prose, but for now I just needed to get some of this stuff down. More to come as the healing continues over the coming weeks...