A Very, Very Slow Healing Process

Well, when you spend two weeks on your back in a hospital bed, mostly incoherent, it takes some time to regain what you lost. One of our favorite nurses on East 8 explained to Noelle and I recently that every day spent lying in a hospital bed requires 3 to 4 days of recovery time (and we've since heard 5 to 7 days) to regain what was lost in that one day. Two weeks! That's how long I was in bed. That means 6 to 14 weeks to just get back to where I was when I was admitted to the hospital on June 23rd! And when I began getting out of bed more around June 5th, it was still so little compared to what it should have been. Yikes! I'm not even three weeks removed from my release from the hospital or four weeks removed from when I BEGAN to come around. This is going to take some time.

I've begun outpatient Physical Therapy appointments two days a week, which will really help. They've given me some really good exercises to do and every time I do them, I feel weak, but invigorated. They're kicking my butt, to be honest. But I've got to get stronger. It's still a HUGE thing for me to just climb the stairs to the top floor in our home. I have no strength, relative to what I've grown accustomed to as an adult. Since my diagnosis in October - yes, almost 10 full months ago - I've lost about 50 pounds, a huge portion of which is muscle. I'm down to about 170 pounds, and with the steroids the doctors have me on, my metabolism is racing every day. I am doing my best to consume over 2,000 calories a day, and still can't put on any weight or muscle. I'm weaker than I've ever been since my childhood.

Cases in point:
Evening walks. I (typically with Noelle by my side) take a walk for a mile or so around the neighborhood every night (weather permitting). Just walking across the street, where there is a slight rise in the middle, can slow me down and tax my muscles. The neighborhood isn't completely level, though I never noticed it until now. Walking sidewalks that rise and fall is a strain.

Stairs. I have to use the banister(s) and work and breathe hard just to get up and down. If there's no banister, I'm in a lot of trouble.

The floor is not my friend. I can't squat, crawl, kneel to pray, or be on my knees for about any reason. If I do, it can take everything I have to get off of the floor. One day last week, I went down to the basement food pantry to get a box of Mac n Cheese for Michael and a friend who were playing here. I got down onto one knee to get the box and couldn't get up. I knew Abby was just above where I was, so I called to her to come downstairs and help me. She came down and literally had to pick me up off of the floor. Noelle later told me that I could have crawled to the stairs and gotten up there, and she's right. I just didn't think of that. Today I was organizing some things in my room and ended up sitting on the floor for a while. When I was done, I had to crawl over to the bed and pick myself up from a kneel, as if I were praying at my bedside. I tried with all that I have to get up off of the floor, but just couldn't without the help of my bed. My balance and strength in my legs and core are THAT bad.

One of the interesting things to me about all of this is that this issue I'm having with my strength has nothing to do with my cancer, per se. For nine months, my cancer treatments went really well. No illness during chemo, quick transplant stays in the hospital and feeling pretty good after and between all of those treatments for my cancer itself. Now, though, I'm dealing with the after-effects of what happened to my body due to a medication it couldn't handle and having trouble functioning at anything near what I'm used to. I told Noelle yesterday that sometimes I feel like I'm in my 80's, not 41 years old. That's so incredibly frustrating. Feeling like I should be checking into the Golden Living Center is not a good feeling. However, I have to count my blessings. It could have been worse - a LOT worse. I could have gone into the ICU (and would have if Noelle hadn't been able to stay with me one night in particular) or worse. My liver and kidneys could have completely failed, causing me to go onto dialysis, which they didn't. Again, that was an "almost" thing. I'm glad we're not playing horse shoes.

I've been cooking a bit lately, and when the kids are back in school, I figure I'll be doing even more cooking and baking around here. It runs me down a bit, but I can do it and it feels good to contribute a meal or two or three every week. Noelle has so much to do every day. I do my best to either help or stay out of her way completely. It's frustrating for us both, and emotionally exhausting. I want so badly to help and because I'm so weak and have no stamina, I can't. I just become a sixth child for Noelle. I hope to become less of a burden soon - very soon.

When the kids go back to school, I do have some projects I'll be working on to do my best to not be a nuisance to my sweet Noelle. I've written a children's book and have ideas for two books for adults. I'll also be working on writing my personal history. It's something I've wanted to begin for a very long time. Now, there will be nothing to hold me back. I also have some genealogical work to do.

For now, though, it's clinic visits continue once a week, with labs drawn on the clinic days and on another day during the week. I've begun taking a med called Cyclosporine, which is a "cousin" of the tachro med my body couldn't clear. We're watching that one and the levels of it in my blood very closely...we want no repeats of last month's performance. Add to the clinic visits my twice weekly physical therapy appointments, and we stay busy. The kids go back to school on August 21st, and we're doing our best to do lots of things as a family in the meantime. I lost about 4 weeks of their summer, and now I'm working really hard to not be a bump on the log.

Here are some photos since my release from the hospital. This first one is from yesterday morning at the Tracy Aviary, an aviary in Liberty Park downtown SLC.

This is me on my first day out of the hospital. Noelle and I took the kids to a splash pad that was a HUGE disappointment.

This is me making my "Mall Pretzels," which turned out oh, so good!

This is me with Dr. Sarada Krishnamurthy, with whom Noelle and I simply fell in love during her 6 or 7-week stay in SLC at LDS Hospital. She is such a wonderful doctor and a joy to know. We are happy she's back with her family now, but we were very sad to see her go.

If you can see, it's now after 2:30 in the morning, and I'm suffering from insomnia. Hopefully, I'll be able to get some rest in the next 4 and a half hours or so before having to leave for a clinic visit at 8:15 this morning. Happy dream hunting.

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...