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.