Ryan Here, It's Been Awhile

This is my first attempt at a post in weeks.  I wish I'd had the creative energy to write more and keep you all up to date.  Who knows, the way things are going this could be the last update I do for quite some time.  Let me illuminate.

Since leaving the hospital 9 days ago I've had one major problem to combat, on top of everything else that goes along with just having had a bone marrow transplant.  Weight loss, due to steroids, especially muscle loss is my current plague.  I entered the hospital at 163 pounds and a resting heart rate of 65 beats per minute, I'm now just under 140 pounds with a resting heart rate of 90 - 105 beats per minute.  Starting three days ago the vascular issues have caused me to feel constantly dizzy; I white out when I sit, I white out when I stand, I even white out when I go from standing to laying.  It is very unpleasant and has substantially lowered my quality of life.

To fight the problems mentioned I do three things: cardio exercise on my recumbent bike, eat ~3000 calories a day, and lightly exercise any muscle I can every day.  All three of these tasks are very taxing, considering my present condition.

I believe I'm still losing at least .25-.5 pounds a day, hopefully not.  The steroids aren't set to taper off until the beginning of September.  I won't make it that long.  Hopefully I can work out a faster taper with the physicians.  I've seen myself at 130 last year, I really don't want a repeat.  I don't have the strength to rise from the floor at 130.

So, other than those serious issues, life is great here at home.  Well, Emily has a cold.  So I'm dodging that too.  For me it'd be guaranteed hospitalization with pneumonia if she shared the cold.  Having a non-functioning immune system is nothing but kicks and giggles.

The GVHD is going well.  I'm able to eat most things with no problem.  Milk is an enemy still, spices don't play nice always, and I still haven't played with tomatoes or legumes.  I will conquer all eventually.  Lactaid pills work to get me past heavy cheese.  Animal fats don't bother me.  Bacon is my friend.

My world is a bit small today.  I can't seem to bring my mind to the 50000 foot view.  Being fatigued and hurt probably has everything to do with that.  I would like to write about more pleasant realities but I don't think that's about to happen.  And, since my back hurts I'm really incentivized to call it quits here.  All of you wonderful people out there cheering and pulling for Emily and me, thank you.  We're still in the thick of this thing, hopefully that changes over the course of the next two months.  I'm looking forward to being on the mend.

The picture of the day is from earlier this year, Max and I were both hairier than we normally are:

Home!

I'm so tired but I wanted to post that Ryan is home! I brought him home this afternoon and it is wonderful. Ryan says it's surreal to be in his own home and untethered (he's been hooked to a pole in that hospital room for 47 days). We moved out all his stuff, which really does accumulate. We filled all his prescriptions (which filled a paper grocery bag, I wish I were exaggerating). We did a little grocery shopping to find a few things he can eat. Okay, when I say "we" with all these things, I mean me. I would not let Ryan grocery shop or move stuff or think through his medication doses. Right now Ryan is asleep in his own bed, hopefully for quite a few hours (except for when I wake him up to take some meds.) He's down 14 pounds from when he was admitted in May. We'll get all settled tomorrow and get the boys back home. It's all going to be hard but good. I can't wait for the new normal to start. Well, I figured a short post is better than no post. Goodnight.

Watch out- kissing picture!

GVHD Stage 1 Diet

A full week has passed since the last update. How is that possible? I guess it's kind of good that time went quickly. Our days are filled with blood sugar tests and the beeping of the pumps for Ryan's IV meds. I'd like to record the noises of the hospital and mash them up into a dance club hit. I might be too tired.

Ryan is snoozing. I was explaining the rules of cribbage and apparently it was like a lullaby to him. Put him right to sleep. I need to make sure he gets some exercise today. I know that last night he woke up at 1am and decided to do a one-mile walk in the halls. Then he showered at about 3am and went back to sleep. It's a good strategy he has going- you really can only sleep when your body lets you sleep. The steroids make it hard to have a normal sleep schedule. So I know he's going to be upset that he slept through most of the time I was up here, but it's okay. 

Ryan's blood counts are so good that they don't even check them every morning now. He's over 3000 on his white count, 36 on hematocrit, 81 on platelets. Things are great in the blood department. Jenny's stem cells are getting in there and taking charge. The GVHD is what's really slowing things down. Yesterday we sort of maybe bullied the doc into letting Ryan try some solid food. He had just less than half a cup of white rice. It didn't make him worse, so today they let him graduate to the GVHD Stage 1 diet. Very exciting! Ryan had half a piece of white toast with a little grape jelly on it. We'll see how it goes. It's been hard for Ryan to feel like he's stalled all week. So this is progress. They will let him add one food at a time, very gradually, and we'll hope that it doesn't cause trouble. If he does get worse when he takes a new step, then you usually have to start back at square one (ice chips). I think we're in the home stretch, which is awesome, but it can sometimes be the hardest part. You feel like everything is just about to fall apart and you don't know how much longer you can hang on. We'll keep hanging on.

I do wish Ryan was awake enough to do a post. Maybe he'll do that at 1am tonight. 

The boys are staying with Terri and Ryan the past two weeks. I think they're having as good a time as they can in the situation (they adore Terri & Ryan but they're tired of all of this and want things to be normal at home). I keep telling them that they're wishing they could be home but as soon as they do get to come back, they're going to be bored and wish they were playing at their cousins' house. It would be hard to express how grateful we are to Ryan and Terri for all they're doing for us. They are loving and caring for our boys while we can't. It means everything to us.

We've had some great visits with family and friends this week, and have enjoyed every minute of it. Thank you so much for visiting Scott A & B, Terri, Mom & Dad, Christy & Ryan. 

I think that is the update for now. Below, a picture of Becca, who I miss.