Monthly Posts? Lazy!

The latest update is unleashed.  My sister, Terri, provided the impetus when she tagged my last post with a note yesterday.  Now, she's visited me more recently than I've updated this blog; she already has most of the interesting information regarding my life.  I'm pretty sure she just likes to keep me busy.  Enjoy!

Dates escape me, weights are inaccurate, sleep is my enemy, and I have diabetes.  Last we talked I was bottoming out.  In the past ~38 days almost everything has gone as I predicted then.  We managed to get my blood product to stabilize.  White, red, and platelets were all headed south and now they are all on the rise.  Platelets are still low but I haven't needed a transfusion in almost 4 weeks.  Previously transfusions were every 3 days.  My weight is currently about 146, so I'm almost 9 pounds up.  That is a very strange 9 pounds, mind you.  It consists mostly of fat and water.  It seems like Cushing's Syndrome decided now was its time to shine.

Diabetes deserves it's own paragraph, don't you think?  So it is real, plain old, adult onset diabetes.  I take a finger prick 4 times a day, I take 10ml of Lantus every night, I require 1-3 insulin shots a day, and without doing all of that my blood sugar level hovers in the upper 200 to lower 300 range constantly.  No one in my family, including my distant relatives, has ever had diabetes.  I'm the winner!  In all likelihood the steroids induced the diabetes.  Hopefully the diabetes will just go away at some point in the future.  However, the doctors have said that they can't make a guess and that they have seen this often and they've seen it go both ways down the road.  We shall see, our good friend time will surely tell us one day.  Until then, hold the sugar.

My dietary options continue to expand.  My stomach, liver, and kidneys seem to be holding up well enough. The only issue I've run into is in relation to highly acidic foods.  Apparently they'll lead to heart burn.  Who knew?  Yeah, everyone else knew.  I've never had that type of heart burn before, unpleasant it is.  I limit highly acidic foods.  Beyond that I eat what I want when I want, it is great.  The only downside is what the radiation and chemo have done to my taste buds.  It'll be a few more months before everything tastes the way it should again.  With fork and spoon in hand, I look forward to that glorious day.

A while back I had bone marrow biopsy number seven.  Six or seven, who can count?  Anyhow, it was far and away the worst biopsy of them all.  It was as bad and as long as the previous worst two put together.  The pillow I bit, swore, and yelled into will probably never be the same.  I'm guessing the poor PA, who was performing one of her first biopsies on me, also won't ever be the same.  I take no comfort knowing that her day was also ruined by my biopsy.  I won't go into all the details but I will say that I won't have another biopsy without very serious sedation, likely general.  This still ranks as only the second most painful experience of my life.

Before going further, and there is a bit further that I'm willing to go, I'd like to share with any who don't already know: The bone marrow results indicate that I have no detectable leukemia at this time.  This doesn't mean that I can't still relapse later, I can.  We all hope I won't, but I'm just putting it out there so you know.  Also, there was 100 percent Jennifer cells inside my marrow.  This is also very good news.  None of my cells remain to fight her cells and her cells are there to fight off any leukemia that may lurk.  All my blood is girl blood, baby!

Here, we'll play a fun game where I rank the pain I've experienced.  Pain is fascinating, especially the idea of trying to quantify pain in a universal or objectively meaningful way, which you absolutely can't.  The worst pain, #1: violent rigors brought on by sepsis is the only pain I've known that I still fear and dread; shaking so violently that I passed out repeatedly from lack of oxygen.  That last biopsy is #2, nothing like repeatedly puncturing bone and extracting marrow if you're looking for a cry of pain.  Other biopsies take spots #3 and #4, I was 32 and 33.  Breaking my arm takes spot #5, I was 31.  Running my foot through the front gear of a bike and the attached chain is #6; I was 7.  A wart removal attempt when I was 11, not numbed properly, the doctor got the needle stuck in my bone and couldn't pull it out, that wasn't even the most painful part of the experience; that's #7, I was 11.  I was hoping to see a top 10 but I don't think I've had all that many extremely painful experiences.  I'm a very careful person.  As you can see, only 2 of the above were self induced.

My current challenges include remembering to take my medicine and staying on top of my diabetes.  I'm also not doing well with diet and exercise.  I generally don't get more than 6 hours of sleep a night and that leaves me uninspired when it comes to staying on top of the day-to-day.  I need to start gathering data, showing myself some improvement.  That always helps.  The problem is starting that process.  I'm all over the place in my daily schedule right now.  It's time to streamline and pull it all together, work harder at getting back to a normal life.  My bone marrow density is 30%, I experience frequent fatigue, I can't control my muscles (this morning my chair ate half my breakfast), and I could go on and on with the physical annoyances that plague.  I don't really let them stand in my way though; I find ways to ignore them using various workarounds.  What I'm rambling about here is a need to refocus, take that away from this awkward paragraph.

The family is doing great.  Jonas and Max are loving school, they both think the teachers they have this year are great.  Emily is still adjusting to here new role as Accounting Manager at OrangeSoda.  She loves working there and loves the people, once she's more familiar with her current role I'm sure she'll love it even more.  I'm able to do some things around the house.  I take care of the boys after school and get them sent off to school in the morning.  I do dishes, take out garbage, clean up in various other ways.  I'm not able to vacuum, dust, and the like due to the tacro and my complete lack of a functioning immune system.  I also can't perform yard work or be exposed to the sun for more than a few minutes a day.  However I am to the point, finally, where we can enjoy tabletop games together and other sit down type activities.  Fancy, eh?

It's been good to get out my monthly post.  Perhaps I can start posting with greater frequency soon.  I hope all of the lovely readers and their loved ones are doing well.  Take care.

Photo of the day, me after visiting the ophthalmologist several days back.  I wanted to do this as an extra large photo but, frankly, even I found it too scary looking; enjoy the medium size Ryan:

The Nader

It's 4:50 a.m. on the tenth of August in the year 2012 and I am still alive.  Despite deadly cancer, blood infections, exposure to maximum limits of radiation, pumping my body full of chemotherapy poisons, becoming an invalid through weight loss (twice), working through a bone marrow transplant and the associated graft versus host disease, and having more transfusions than I could guess at.  I'm something pretty Frankenstein if you think about it.  But I, as was he, am alive.  I'm not so much me as I once was, physically or mentally.

Since this all began last March I've had to first deal with the possibility that I was going to die.  Of course, we all are, but no one should have to spend their time believing it will be soon.  The idea that staggered and pained me for more than a year was the harm that my death would bring into the lives of Emily and my boys.  I've finally moved beyond the pain of that idea and accepted that I've done everything I can do in preparation for it, again, both physically and mentally on my behalf and theirs.  I've created videos, I've created financial stability, I've written letters, and I'm still alive!  I've worked very hard to stay alive.  Hopefully no one mistakes that hard work as a selfish desire on my part.  Were it not for my desire to protect these few I love most I would not have had a bone marrow transplant and I would instead be enjoying chemo induced remissions until those quit working.

So I haven't had any real news in the past month.  So I haven't shared any.  Well, that's part of why I haven't shared.  There's always news.  It's just that, in medical parlance, I've been doing nothing good, I've been approaching one nader after another.  Bottoming out is what I've been doing.  There may be good news though.  I believe my weight may be stable at 137.  If it's stable I can get it to climb.  I was started on 75mg of prednisone and I'm below half that now.  The Cushings is pretty ugly right now.  I have a giant extra chin and my face looks like a huge potato, the hump on my neck is way sexy.  That should all go away too, once I have functioning adrenal glands, perhaps in a couple of months.

More condensed detail: I'm receiving platelet transfusions every 3 days, I don't know why they won't do two bags at once.  I'm visiting the hospital clinic in SLC every week for updates, they do x-rays every other week.  I talked them out of x-rays every week.  I take roughly 35 pills a day along with 7 oral medications and a liter of fluid with magnesium through my central line over 2 hours.  In between that I am attempting to hit a minimum of 3000 calories each day.  My days are a blur of medicine, food, and lying around in bed waking and sleeping at odd times.  Lately I wake up at 4:30 and can't sleep after that.  Today, that netted you all a post.

What does one do to enjoy this whole process?  Not much.  I've converted my bedroom into a very functional place.  I have 20 ways to entertain myself but only one way to be even sort of comfortable.  At my weight and with no platelets a fold in the sheet under my body causes me pain.  To that end, I don't generally wear any clothes in bed and I often have to adjust the sheets underneath me.  Reminds me of the story of the princess and the pea.  So that's my day.  Me.  Naked.  Chilling in bed.  Here's to hoping we're headed for the zenith, starting now.

There are still so many people doing so many kind things for us.  I would hate to miss listing a name so I won't list names.  But, you know who you are and what you've done and I want you to know how much it means to us to have your love and support in our lives.  I've had very few visits over the past month as I generally don't feel well enough.  However, there are those who've been turned away often and I just want them to know that I'd love to visit or take calls but most of the time I don't because I can't.  I would love to visit with my friends and take their calls and I will as often as I can, hopefully with increasing frequency.

Let's do something different for the picture of the month.  This is my beautiful sister Terri and me as children:

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.