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.

Ryan Returns to the Keyboard

I haven't posted in a while.  The weeks haven't been kind to me.  Hopefully I'll be posting more in the future.

I'm feeling better now though and I hope to be home in the next 7-10 days.  We'll see if that date holds.

3 days ago I was started on some powerful steroids.  I don't know why I'm telling this story.  Anyhow, the doctors couldn't keep my glucose at a proper level.  So for two days, every two hours, they would prick my finger to check glucose level.  It was inevitably high every time, ranging from 190-250.  So five minutes after the finger prick I'd be giving myself an insulin shot. The first finger prick didn't always work either.  Thus ends the story of why I gave myself 24 insulin shots in 2 days, along with 28 finger pricks, and two lovenox shots.  It's day three or four today and I think we almost have things under control.  They've added 35 units of insulin to the TPN that drips into me all day.  I'm pretty sure this will temporarily give me adult diabetes.  Today I've already given myself two more insulin shots, one while writing this post.

In the past two days I've been out of the hospital for walks.  It's been nice, apparently my white counts are good enough for outdoor activity.  That is, as long as I don't get any exposure to sun, wear a mask, wear a gown, and wear gloves.  Still, this is much better than being in the hospital all of the time.  Emily and I did 1 lap around the hospital two days ago, we did two laps yesterday, the goal today is three laps.  It would be nice to know the distance.  Either way, it takes us a long time.

They are moving me to ice chips today.  This is thanks to the steroids and other drugs doing their job with my gut based GVHD.  If the ice chips don't make things worse I'll be allowed to drink some water.  If that doesn't make me sick I'll be allowed to have half a soda followed by the same amount in water.  And, finally, if I handle all of that well I will be allowed to eat rice or cheerios with soy milk.  It's a good thing I'm not hungry, this is a depressing list.  After graduating through all of the previous levels without relapsing I'll be allowed to eat food you could live on.  That's when I really start to eat.  They won't let me out of here until I'm putting down 1745 calories a day.  Let me tell you, that is a staggering amount of soy milk and cheerios.  So, everyone keep your fingers crossed, I could be out of here in a week or so if everything goes perfectly.

What else is moderately interesting.  My general health, perhaps.  Strange leg pain between foot and leg.  Dry eyes.  Odd thick mucous that must be sucked out with the same tool dentists use.  Persistent general fatigue.  Chemo brain.  Nominal emotional control, that's the roids for you.  Stomach pain, GVHD.  I'd like my hair back.  All-in-all I feel well.  Everything really could be so much worse.

I'm optimistic.  I think I'll be home soon.  I think I'll feel better soon.  I think home life will be mostly normal shortly after I return.  I'm excited about the future, regardless of quantity.  I don't care about percentages.  I'm going to do  everything I can to enjoy the rest of my life.  I realize much of the next year will have me tied up in clinic visits.  That's alright.

I have wonderful friends and family.  Did I mention that the steroids make me emotional? I'm taking life one day at a time and enjoying it.  This is an easy proposition when Emily is your best friend, helping you in any way she can.

My love goes out to all reading this.  Have a wonderful day and a wonderful life.  I believe this is your one shot, make it count - live a happy life.

The picture of the day - what happens when Tim and Emily conspire to hook me on a children's game while I'm fatigued.

Return of the Steroids

Ryan's doctors put him on steroids yesterday to try to control the GVHD (graft versus host disease) that they confirmed from those biopsies. Ryan was pretty disappointed. He was hoping to be able to kick the GVHD without steroids. But the doctors thought this was the best option- try to hurry and get it under control and not risk having it really take over. We don't want a coup here. Steroids cause a whole host of problems for Ryan. He has severe muscle wasting if he's on them for very long. He doesn't like the way they change his personality/demeanor (roid rage is no joke, people). They throw his blood sugar level through the roof. Since yesterday morning Ryan's blood sugar level went from low 100s (very normal and consistent for him) to 270 last night. So they're pricking his finger every couple hours and giving him insulin shots. No fun.

His stomach is still really hurting, but they're hoping if they can get the GVHD under control then that will get a little better. Still no food for Ryan, although I can tell he'd like to eat. I'm under strict orders to not talk about food. That's tough because food is one of my favorite topics of conversation. They're talking about letting him eat a tiny bit today and see how it goes. There's a detailed eating plan when you have GVHD. You start with one thing (just one!) and it can be half a cup of white rice or mashed potatoes (no butter!) or a slice of white bread. And then depending on how that goes, you can add one new thing the next day. It's slow going.

His counts are looking awesome though. His white count is 1800, platelets are at 79, hematocrit is almost 30. One more day like that and they'll officially say he has engrafted. That is really exciting. Even with the GVHD, the bright side is that maybe he'll experience the GVL effect to a greater degree (graft versus leukemia effect, which is a good thing.) Oh, two more pieces of good news- the polyp biopsy came back and it's not cancerous AND they found a medicine that helps a lot with the burning feet problem. Super nice.

This post is kind of late because I keep waiting for Ryan to do a post and I know he really wants to. He says he picks one of his better times, opens the laptop, gets ready to start typing, and then instantly falls asleep sitting up. (He really does do this, I've watched him.) I think the mental energy it costs him to write is just too much for him.

We had a good time playing Name That Tune last night. This is Ryan's trickiest way of getting me to stay awake longer (and now he knows I know). I got "While My Guitar Gently Weeps" and "Can't Get No Satisfaction" and "These Are Days" super fast. I failed on a bunch of Ani DiFranco songs ("Slide" and "Make Me Stay" and "Dog Coffee". Son, I am disappoint.) Ryan didn't sleep a whole lot during the night, what with all the finger pokes for his blood sugar levels. I slept better than I usually do here. I'm trying to let Ryan get some sleep this morning, but it is a steady stream of hospital people this morning.

Picture for the day: Ryan holding a green tea from our most recent trip to San Francisco (May 2009). This green tea is easily the worst thing I've ever tasted. Kind of makes you never want to eat again. Maybe they could use a mouth rinse of this for Ryan. Help him get over the idea of wanting to eat.

Define Irony

Let me tell you a story of irony. It's a double-feature. Friday during the day, Ryan and I were talking about life and how sometimes things can happen that come out of nowhere and completely throw you off balance. Ryan likened it to a car accident (because he is the master of analogy). He talked about how you're happily driving along and BOOM! You get hit. It shakes you up. You're shocked, you're skittish around other drivers, you're sore. It takes awhile to calm down, it takes a few days to drive around and feel somewhat safe again, etc. It runs its course, you deal with it, life goes on and pretty soon you're feeling pretty good again.

So on the way home from the hospital that night, I got rear-ended. It was not a big hit, the car's fine. But the first thing I thought (well, right after "What the heck just happened?!?!") was "How ironic." And that's what I texted Ryan.

So I went home and decided that instead of working, I would just veg in front of a chick flick. A time-honored remedy for stress, right? I got set up with some ibuprofen and cold cereal and settled in to watch my run-of-the-mill romantic comedy about a funny, beautiful, and successful woman that can't open herself up to love until she meets the right man, etc. etc. etc. Pretty standard stuff, which is all I wanted. Then the movie takes this major turn. The girl goes to the doctor, the girl finds out she has colon cancer, the girl quits the chemo treatment, the girl says a slow and painful goodbye to her family and friends, the girl dies. Holy crap! That is not what I needed in my chick flick. Sheesh.

So the next day they do an endoscopy and colonoscopy on Ryan and find a polyp. How. Ironic.

Enough about me and irony. I want to give you all the details on Ryan. I've been told I don't give enough detail. Since the last post, they found out Ryan has another virus called the BK virus. It's a similar story to the VRE virus- they won't treat it unless it starts to cause a problem. Hopefully his body (with its climbing neutraphils) will be able to keep things under control. We're not going to worry until there's actually something to worry about. His platelets climbed another 10 today, his white blood cell count is climbing as well, his hematocrit is almost at 30. Things in his blood are definitely headed in the right direction.

They did six biopsies during the procedures yesterday. The GI doctor was very good. She said we'd have results back on Monday. It will tell us everything we need to know about whether Ryan is having GVHD symptoms, and also about that pesky polyp. They didn't remove the polyp because they were worried about bleeding and infection risks. Tony (our nurse yesterday) said that the bone marrow patients make the surgeons really nervous, and they're very reluctant to do much work on them.

Ryan's mouth and throat have improved a lot. It no longer hurts much to swallow. His stomach is feeling less upset the further he gets from that unfortunate bowl of Cheerios. He hasn't eaten anything for two days now and it's going better. He has found ways of dealing with his burning feet. Leaving them out of the covers, not letting them touch each other, ice packs, putting them on the cold floor in the middle of the night, etc. He looks a lot better than some days I've seen him. The pain pump is helping control his pain quite well.

Ryan's friend Travis dropped by last night with a smoothie for Ryan. Very thoughtful and it went straight to me. Ryan really liked talking with him. Travis actually had an autologous bone marrow transplant about a year ago I think. He looks good, is doing well. Scott and Melissa visited for awhile after their anniversary dinner in Salt Lake. It was so good to see them. We talked about all the black-and-white shows we watched as kids. (Loved The Donna Reed Show, hated The Andy Griffith Show, felt neutral about Mr. Ed, etc.)

Today's plans are to get Ryan to walk around a bit and do some exercises and stretches. Also to finish watching Spies Like Us, which I've never seen before. Ryan decided now is as good a time as any to make me watch all the movies from the eighties that I missed (which is most of them). I wouldn't say I missed them, Bobs. Finally, here's a picture of Jonas on his first ever fishing trip. Jenny & the Porritts treat him like the world's only and cutest kid, and frankly, spoil him completely. I think it's exactly what he needed. Thanks so much Jenny and all the Porritts! Jenny says Jonas caught 15 fish at Strawberry Reservoir. Ridiculous!

Titles should not be the hardest part of a post

Ever feel uninspired? Well, that's how I feel, so this update will be short and dull. You're welcome. Ryan ate a small bowl of Cheerios this morning with some soy milk. As he set the bowl aside, his nurse came in and let him know that he's NPO again (he can't eat food anymore, he'll have the TPN dosed at full strength again). Apparently they suspect GVHD, given all Ryan's stomach pain and other issues. So the hope is that if they back off on the food, maybe his body will calm down and we won't have to get into a serious GVHD situation. 

About ten minutes after that, we found out that Ryan has VRE. This is a bacteria that many people can carry. If you're healthy and have a normal immune system it rarely causes a problem, it just kind of camps out. If you're immune compromised, it can turn into an infection that is hard to treat and can cause some real problems. VRE is short for Vancomycin-Resistant Enterococcus. Vanco is one of the antibiotics Ryan is already on, so obviously that won't work to treat a possible VRE infection. So if it becomes a problem, they'll have to break out the big guns, antibiotic-wise. What I love is how the doctors and nurses come in and let you know you have VRE and that it's no big deal, don't worry, they won't treat it. At the same time that they say this, they're all getting hazmat suited-up and hanging a warning sign on your door. You have to laugh because it's kind of funny. I can picture a fantastic Andy Samburg skit about this. 

Other than that, Ryan has mostly slept and pushed the pain pump. So there's the update. Now here's one of my favorite pictures of Ryan- it always makes me smile.