Relapse *Warning - Contains Onions*

My leukemia has relapsed.  The physicians caught it three weeks ago.  I wasn't very surprised by the news, I'd been in a constant state of fatigue for at least six weeks.  Fatigue has been my only major symptom before being told of my leukemia each time.

The week after diagnosis was spent performing tests to verify the state of my leukemia.  What it came down to was fifty percent bone marrow density and eighty six percent leukemia.  That means that since my bone marrow transplant I've recovered half my bone marrow and as of two weeks ago eighty six percent of that marrow consisted of leukemic cells.  The fancy twist to this relapse: I now have two leukemias.  I have immature T cell ALL, as I have for 20 months, and I have AML, myeloid leukemia.  The AML is likely due to the radiation I received prior to my BMT.

Emily and I consulted with the physicians regarding options, discussed them privately, consulted further and finally, after several days, decided on a course that we felt would likely provide us with the best outcome we could reasonably hope for.

The options were not great.  The options were heartbreaking.  The options forced us to make a decision no one should ever have to make.  We're getting used to making such decisions.

Option 1: Also known as the hardcore option, consists of chemo, chemo, and another bone marrow transplant.  We'd be banking on the graft versus leukemia effect, apparently my leukemia is strong against radiation and chemo, GVL (graft versus leukemia) is the only possible hope for long term survival.  The problem with this option is the very low probability of a successful outcome; it is calculated roughly .4 *.4 *.4 = 6%.  In theory you have something like a 3-6% chance of long term survival.  You have a 40% chance to survive the necessary chemo attempts and achieve remission, a 40% chance to survive the BMT process, a 40% chance of contracting GVHD,  and an unknown % chance of also picking up GVL.  Only one study has been published regarding people in the situation I'm in now.  It was published this month, the data has been collected for over 3 years and there were 31 patients observed.  These patients opted for the second bone marrow transplant procedure.  1 year after the transplant was completed 23 percent were still alive.  3 years after the procedure 11 percent, 3 patients, were still alive.  None have achieved long term survivor status, that takes 5 years.  The physician I spoke with here doesn't believe any will make the 5 year mark, possibly 1.  Option 1 offers a minimum of 10 months combined hospital and recovery time, 1 year of immune suppression, and because a successful outcome requires GVL it also requires GVHD which can take years before you find a balance with GVHD that allows for an acceptable quality of life.  Option 1 is a near guarantee that you will suffer all your remaining days and death is very likely to come for you inside the first year.

Option 2: Palliative chemo with the intention of creating a balance between length and quality of life.  With this course you'd be looking at the first forty percent gateway again because you'd do a round of intense chemo up front which could well lead to death via complications.  If the chemo goes well we would then begin a long term regimen of another weaker chemo that should allow for good quality of life.  It won't stop the cancer but it will slow it.  There may be other decision points in the future where I could do full rounds of chemo to try and live a bit longer.  This option could kill me tomorrow, carry me for 7 months, or it could lead me along to a miracle.  The doctors anticipate 7 months.

Option 3: Hospice.  I would die before 2012 was out.  How's that for a Merry Christmas?

I chose option 2.  I started the least pleasant round of chemo two weeks ago.  Clofarabine was recommended.  I'm hitting the low point of the treatment right now.  I was admitted to the hospital on the third and returned home on the eighth of December having received 5 treatments with Clofarabine.  I spent a week at home while shuttling daily for blood tests and transfusions.  Yesterday I was re-admitted to the hospital, which is where I'm writing from right now, because they cultured bacteria in my blood; I have sepsis, it is a gram positive bacilli.  They may need to remove my central line and replace it because of the infection, we'll know in a day or two.  If all goes well from here I'll be home before the weekend.

Emily and I have had various unpleasant but necessary conversations.  She generally doesn't like talking to people about the details of my condition.  As you can imagine, it's very difficult for her.  She also worries about our boys becoming aware of all the details any sooner than they need to.  Writing this post makes that danger a bit more real.  I'd appreciate if you didn't discuss any of the details around my boys or around children who interact with my boys.

Now, more than ever, I'm enjoying life.  I still have hope.  I hope for something, miraculous or mundane, to come and fix me so that I can spend the next 50 years sharing my life with loved ones.  There is no belief in a long life for Ryan, just a hope.  I believe I will go as the statistics suggest.

This situation is tragic, I can't imagine anything worse than losing Emily.  As it stands she'll have to live through the worst thing I can imagine.  I can't afford to spend the rest of my life acknowledging that fact.  The tragedy warrants grief, more at certain times.  The only reasonable course for me is to acknowledge it as often as Emily needs me to; I try to spend the rest of my time thinking of and doing fun and productive projects.

I meant to post this update weeks ago.  The first week we didn't have answers, only questions.  For the last two weeks I've been so tired that I couldn't write.  Today, thanks to a fentanyl patch and a free day at the hospital, I've felt well enough to get this much of a post written.  There are plenty of questions you may have, feel free to ask me anything.  My thinking is mildly impaired because of the narcotics working to dull the chemo pain.

You are all wonderful.  Thank you for being my friends, supporting me, following my story, and caring about my family.  The support networks that Emily has are my greatest comfort when I imagine her making her way in this life without her partner.  All of her family and my family, all of my friends, all of our shared friends, the girls in her book club, and her friends and co-workers at OrangeSoda, I'm counting on you to keep supporting her as you have so that she can carry on with a wonderful life when I'm not there to be her support.

Some time soon I will write again, probably once I'm out of the hospital.  Until then, as you were.

Jonas and Ryan, 2002 was a crazy year.  I have no idea why Jo looks terrified.  We were happy to have him home alive:

 

The Halloween Advice and Update Column

Life is silly.  Since last posting I've had hundreds of interesting experiences, thoughts, dreams, and ideas.  What I choose to share will be offered with limited context.  This is, of course, all by necessity.  I've long dreamed of a device, method, or magic that would allow for a person to completely experience the consciousness of another; I believe this would bring about world peace.  But we don't have that magic.  We have our senses and faculty.  So I write this for you.  I don't write it hoping, or believing, that you'll ever know me or understand my experience of the world; you won't and you can't.  I write today to offer advice.  We set out looking for comfort only to learn that hard work is life's greatest comfort, life is silly.

Be happy.  Do yourself this favor.  Your emotions are one of the only elements of life that you control.  In most other cases control is an illusion, a very frustrating illusion.  All that you love can be taken from you in an instant, you can't control that.  But you can control your attitude.  So be happy.  There isn't a magical formula, there aren't steps you need to follow; it is a one step process: Be happy!  Now, especially with the uninitiated, there are questions that arise such as "How can I be happy when I'm worried about problem x, y, z, etc..?".  The answer is, quit worrying about issues you can't do anything about and if you can do something about the issue, go do it and do it happily.  Try not to consider yourself a victim, it's hard to be happy when you have the excuse of your victim status as a reason to be unhappy.  I didn't opt-in to cancer.  I don't consider myself a victim.  I'm happy and I've been happy despite the cancer, hospitalization, etc.  Be happy.

Be prepared for the future.  Don't worry about the future.  Tomorrow may not come.  Don't waste today on worry.  You should spend your time and energy on pursuits that you enjoy.  Spend your time with friends, family, and whatever interests you enjoy.  Don't waste your life, it is a time-limited event.  Time is the most valuable resource, worry wastes time.  If I'm going to die tomorrow, I certainly don't want to spend today worrying about it.

Don't spend your time regretting the past.  Perhaps, 20 years ago, you did something that you regret, maybe it was only 30 seconds ago.  Either way, I suggest you get over it.  You cannot undo what you've done.  If you should apologize, do so.  If you can offer to repair or replace something you've broken, do so.  Do not sit and be upset with yourself.  This is terribly common way the people waste their lives.  Prolonged regret wastes time and robs you of an otherwise happy state of mind.  When regrettable situations occur you should do what you can to repair them, commit to avoid similar situations in the future, forgive yourself for your foolishness, and move on happily with your life.

Don't pin your willingness to be happy on outcomes.  Far too often people choose to suspend happiness and replace it with another emotion pending future events.  They say "I'll be happy when it's the weekend" or "I'll be happy when I have a job I enjoy" or "I'll be happy when my son is home safely".  Such thinking is asinine.  Why not be happy now and when the thing you're hoping for happens.  Even better, be happy now and keep being happy even if that thing you're hoping for doesn't happen.  Why choose a less pleasant emotion in the meantime?  You can't control the job you have, how quickly the weekend comes, or whether your child makes it home safely.  Relax and enjoy the life and time that you have while hoping for the best.  If the worst comes it'll be easier to bear it in an accepting and relaxed state of mind.

When the end is near and I review my life as I wait for it to pass, I honestly believe that my greatest regret will be all the times that I choose to be something other than happy.  It already is my greatest regret.  I just don't ever think about it because I don't have time to waste on regret.  Neither do you.

I write this to remind myself of my own priorities and reasoning as much as I do hoping that others will gain some benefit from the reminder as well.

As for my health, we're in a constant state of flux.  I ignore thinking about it as much as possible and focus instead on taking care of myself in the moment.  Fatigue has been winning a battle with me over the past two weeks.  I'll win that battle soon.  Diabetes has backed off, I'm not on any medications.  It appears that the diabetes was steroid induced.  Visited the dentist today concerning teeth sensitivity.  I'll be picking up fluoride trays on Friday.  There is some concern right now about a skin based chronic GVHD.  I'll be going in for a skin biopsy soon to determine if it is indeed GVHD.  If it is, that won't be fun.  I'm still on more than a dozen medications, many of which have very unpleasant side effects.  Hopefully I can keep working away from those as time moves on.

I miss the world, my old life.  I miss going for walks, being in the sun, seeing all of you people, enjoying a meal at a restaurant, feeling well, working, co-workers, enjoying a false sense of control, believing that my behavior was justified, and feeling like I was good at what I did.

My people are doing pretty well.  Jonas and Max are both wonderful and sweet boys.  Emily is, well, Emily. She is rightly idolized by many.  We would all be in great shape if we were blessed with Emily's brains, work ethic, efficiency, wisdom, sympathy, grace, beauty, and general awesomeness.  I'm a very lucky man, to have such beautiful people in my life.

Let's see, for the picture of the... Month?  We'll go with a picture of my peeps in partial Halloween costume:

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.

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.

First signs of engraftment

Some great news! Ryan's neutraphils are at 200 this morning. That means that the process of engraftment is beginning. The doctor said he expects Ryan will have fully engrafted within about a week, then we'll be hanging out waiting for his counts to come up and get past that window of accute GVHD. Still no signs of GVHD, so we're hoping for the best. The week has been a stressful one, but we're really happy about this morning's news. We love you all and appreciate your continued caring and concern. 

Ryan has been mostly out of it today. He's still having quite a lot of pain. He is doing his very best to get out of here though. He's trying really hard to eat so he can get off TPN. He's trying to use his pain pump less. They definitely won't let you out of the hospital if you're on TPN or a pain pump. He's also trying to move around, walk, etc. This gets pretty tricky when you're a falls risk, but we're doing the best we can. I'm trying to be up here as much as I can so he has help in staying awake for even part of the day in order to do some of these things. I'm sure he'll want to give a more complete update when he feels up to it, but I wanted to give a brief update while I had a minute. 

Highlight of my day was giving the grocery store sushi a try. Surprisingly delicious. Also scored a free latte from Einstein Bagel. I go buy my $1 whole wheat bagel and there's a free coffee coupon on the receipt if you fill out their online survey. So I do. Then I go buy my $1 bagel and get my free coffee. Rinse and repeat. This can't last. 

Well, you should get back to work or your kids or your life. I will get back to Ryan.

Yes, Everything Still Hurts

My Emily has gone home.  She's the best part of my life.  Sure, some people believe co-dependance is a bad thing, and they're probably right.  However, knowing that there is a person out there who cares as much about me as I do about them brings me peace and gives me the will to fight.

My everything continues to hurt rather seriously.  This is day 20 here at LDS Hospital for the bone marrow transplant process.  Everyday has been a little bit worse in one way or another.  Today and yesterday are exceptional in that both days my throat improved.  My body compensated for that by increasing joint, muscle, and bone pain.  I think it overcompensated.

Time is passing quickly enough.  Hopefully the next week will be a harbinger of good things.  Since I don't have much in the way of good news this will be a short update.  Also, my head keeps slumping into semi-consciousness.  I don't want to take any new injuries while writing a post.

I'm sure that soon enough my posts will regain some of their entertainment value.  Until then I recommend re-reading all of the old Peanuts books, Snoopy is hilarious.

Thank you to everyone for your help in this process.  Jenny, those bruise pictures look terrible.  Thank you for the bone marrow.  I owe you one. ;p

As for visitors, it depends.  I sleep all hours of the day but I've still managed to have a few drop by and it's been nice.

The picture of the day, my monkeys enjoying the bunk bed:

Constant Short-Lived Naps

I think I'm honestly posting this just to have two days in a row of posts and not feel the need to apologize at the beginning of a post for once. Also, I'm probably posting because I have time and I don't know what to do with myself in a small quiet room. Ryan has been pretty out of it this afternoon. He's getting almost no good sleep. He's at the point where he's hallucinating, drifting in and out of sleep constantly, etc. Tacro (the immuno-suppressant medicine he's on) has a side effect of making your hands and feet feel really hot, like maybe you're holding them over a hot burner. It makes it really hard to sleep. Also, anytime Ryan sleeps for a bit, he wakes up in a lot of pain. His mouth, his head, his stomach- they all wake him up and he's miserable for awhile, then he kind of falls back to sleep. It sucks. I wish I could help. I can't really. I massage his legs (that helps a bit with the bone aches) and I hand him things (tissues, saline rinse, urinals, pillows). Not a lot I can do right now. Ryan did drink a ginger ale today. He thought it sounded good and he wanted to test out his throat to see if it felt any better. He got through the whole thing and said it was about a 6 on the pain scale. So what does that translate to on the Clydesdale scale, you ask? I believe it's two mules. I'm not great with that scale though, so don't take my word for it.

I believe the plan for the rest of the night is to keep Ryan as comfortable as possible. Maybe listen to some more Bossypants. Maybe make a list of my top ten movies. Maybe get Ryan to take a short walk in the halls. That's always a goal, it doesn't usually happen. Dang- Ryan was sleeping pretty nicely just now and the CNA loudly came in to do vitals. Maybe I'll make a DND sign. Or at least a "Be Stealthy" sign.

For my own entertainment, here's that movie list. Most are good solid shows you can be proud to call your favorites. The rest are more the "I don't care what you or all the critics think" variety. I'm sure you'll be able to differentiate.

1. Castaway
2. Out of Africa
3. Meet Joe Black
4. The Royal Tennenbaums
5. Forgetting Sarah Marshall
6. Amelie
7. High Strung
8. O Brother Where Art Thou?
9. Shawshank Redemption
10. When A Man Loves A Woman

Picking just ten is too hard. Pelican Brief, Dan in Real Life, Gattica, High Fidelity, and Field of Dreams didn't make the cut, and that doesn't seem right. Don't hold me to these. But please do post your own list in a comment. Entertain me for the night.

Hospital Bed Transformed Into Day Bed

Can five days really have gone by since the last blog post? That's shameful. Time flies in blog land apparently. It's not going quite as fast in hospital land, but we'll get through it. Ryan wanted to write a post with me two days ago, but he really wasn't feeling good enough and it never got done. Then he insisted he would write a post himself yesterday, but that was the drugs talking. He spent a lot of the day sitting up in his bed with his eyes closed, saying he didn't want to lay down or he'd fall asleep. This is cute and sad at the same time. 

The update on how he's doing physically is a little bleak. The mucositis is progressing and is extremely painful. I know the kepavance probably prevented it from being worse, but it's still plenty bad. He has a suction tube so that he literally never swallows. He had one medication that doesn't have an IV form so he was still trying to swallow that in pill or suspension form, but it is agonizing so they decided to ditch it for awhile. His liver will have to fend for itself for a few days until he can swallow again. Today a nurse told us a lovely story of a patient with mucositis in the pre-kepavance days that coughed up his own uvula. I thought I'd share that pain with you all. Sorry, I feel bad about it already but I'm not going to delete it. We're really grateful the mucositis isn't worse, but it's still the most painful thing Ryan is dealing with right now. To give you an idea, he says that swallowing is easily more painful than getting a bone marrow biopsy and even more painful than when he broke his arm a couple years ago. He has a very hard time sleeping due to the mouth/throat pain, aches in his leg bones, digestive tract issues, and headaches. The pain pump helps. To me, he looks a bit better than earlier this week. Here's to hoping it won't be worse tomorrow. That is our dearest hope right now. It will be really exciting when his counts start to come up and things start improving. Starting tomorrow (Day 8) they will be looking very closely to see if there are any signs of engraftment (a good thing) or acute GVHD (a bad thing). 

I don't know what else he wants me to give an update on. We've been working our way through the audio book Bossypants by Tina Fey. It's a perfect book to listen to right now because it makes me laugh and it doesn't matter if Ryan sleeps through half of it- it's not one continuous story that you'll be confused about if you miss a part. He still enjoys the parts he hears. This afternoon we rearranged his hospital room. This is a much bigger deal than you realize. The room is a positive pressure room with a hepa filter running all the time. This is great for keeping out germs but it constantly blows cold air right where the hospital bed was. It was Ryan's biggest complaint about the room. So now we rearranged the whole thing and it's much better. The bed isn't in a wind tunnel anymore, the room feels bigger, I have room to stretch my legs out, Ryan has a great view from his bed (this is reminding me of that O. Henry story about the last leaf for some reason)- anyway, it's all very pleasant. I got the idea from a seventy-year-old guy across the hall. I feel like all we need is a rag-tied oval rug for the middle of the room and we'd have ourselves a stunning sitting room. That rug is probably against hospital policy, so never mind.

We really love Jessica. I feel that this can't be said enough. She is loving, smart, hard-working, generous with her energy and time, and an amazing friend. She and Elliot are taking such good care of our boys. We deeply appreciate what they are doing for us and it means so very much to us. 

We also love the nurses, CNAs, and doctors here at the hospital. They are fantastic. We've had some visitors this week (and we've also cancelled on quite a few because Ryan just wasn't up to it), but we were really happy to get to see Becca, Elliot, my mom and dad, Angela, both the Scotts in our life (Bonnett and Ashby, henceforth to be referred to as Scott A and Scott B, grade-school-style), and Terri. We love them and we love all the people in our life- that is what it's all about.

Ryan is hooked up to six different lines at all times. The TPN for nutrition, the pain meds, fluids, Tacro, Invanz, Micafungen, Vancomycin, Acyclovir, Levaquin, platelets or red blood, an O2 sat monitor- he says he finally feels like he's getting his money out of the nursing care fees now. They're in the room a lot, switching out meds, changing dressings, taking samples, etc. Good thing we like them. Ryan used to be the easiest patient here, but he's definitely stepping up his game. He keeps them hopping. It is very nice though to walk into the hospital and know almost everyone's name. It feels like a home away from home now- so different than the first time we walked in last March. Even when they use the cleaning product that smells bad, I don't mind. It's just nice that it's familiar. Also, maybe I can't smell how bad it is anymore because I'm used to it. Probably like when I worked at a dentist office- pretty soon I didn't notice that bad dentist-office-smell. And I didn't know I smelled like it when I came home. Nice for me, not so much for Ryan.

Well, Ryan is napping. The room rearranging and shower have completely exhausted him. The medications are hitting him hard as well. They give him a dose of Benadryl before the Vancomycin because he has a reaction to it. The combination of Benadryl and Fentanyl (pain med) makes him really sleepy. I'm always glad when he can relax enough to sleep. I hate seeing him in pain. We're going to count moving hospital furniture and showering as his workout for the day. 

I'm rambling now, so I'm going to end here. Photo of the day is a few of my favorite people: Jessica, Valerie, Jacob, Jonas, and Annalisa. This was a New Year's Eve party a few years ago, when Jessica organized onsie pajamas to be worn by all.

Transplant Update

So sorry this update is a little late in coming. Ryan isn't feeling so good. And no, he hasn't started referring to himself in the third person (yet), this is Emily filling in again. Ryan thinks he'll dictate some at the end here. The transplant well smoothly for the most part. Jenny came in on Tuesday and Wednesday morning at 7am on an empty stomach. They poked I don't know how many holes in her arms. She'll have some fine bruises to show for all her trouble. They were able to avoid using a femoral artery to harvest the stem cells, which I know Jenny was really happy about. Jenny was pretty happy about most things the second day because they finally gave her the good pain meds. I felt so bad that she did the first day with no medication. Not cool. Since I don't know how to sufficiently thank Jenny for all she's done for us, I'm not even going to try. How's that for fair? Jenny knows how much we appreciate and love her, and we'll keep showing it year after year. That's a bit more fair. She's still very nauseated today. I'm hoping she can recover soon.

Ryan started receiving Jenny's stem cells about 6pm Wednesday night. We had one of our favorite nurses that night, John, who was very good to work with. Ryan started having a reaction about five minutes into it, but they backed way off on the rate they were putting the stem cells in and that helped. The rest of the transplant was uneventful, which we love. Call us boring, but we love ourselves an uneventful day. I believe Tim called me boring the other day. Hmmm. 

The day of transplant is officially day zero of the protocol. So now we're on day three. Ryan is not feeling good. The whole process of food is becoming too much for him. It hurts going in because his mouth and throat are getting more sore each day (thanks radiation!). Once the food hits his stomach, he struggles to keep it down. And then it goes right through him and is painful on the way out. I haven't managed to talk him into any food today. He dodges any questions I ask about his food intake yesterday. (I wasn't here yesterday- craziest day of work ever, but his brother Scott spent a lot of the day with him.) The doctor should come in to talk to us any time now, and I believe we'll talk about starting TPN (total parenteral nutrition, you can read more about it here: http://www.livestrong.com/article/374528-the-tpn-diet/). Other troubles are headache, body aches, ear ache, strong hiccups from the chemo, fatigue, (radiation and how hard it is to sleep in the hospital), etc. Ryan doesn't like to complain about all this, since it doesn't help. But that's the update. Even though he feels crappy, he is still working hard to stay positive, make jokes, and smiles (although they're sad smiles). I love him for trying.

Right now he's trying to distract himself from all that by playing Fallout. His mouth is getting sore enough that talking just makes things worse. But we've still talked this morning about this strange life. How beautiful and unique and fleeting it is. My grandpa died on Wednesday. I loved him very much. He gave me his books to borrow when I was young (The Wizard of Oz, The Great Brain, lots of Beatle Bailey comic books) and then gave me his Alfred Hitchcock videos to borrow when I was a teenager.  I loved his sense of humor, the gleeful look on his face when he would tease babies, the way he always called me "little one" even though I'm thirty-five now, hearing him read poems at family parties, and the way he loved his hobbies and knew how to share them with people. I will miss him very much. 

The boys have essentially moved in with Elliot and Jessica. They are surrounded by family and people that love them. That makes it a little easier to cope with not being their full-time mom right now. I can't actually talk about this right now. But I'm told they're doing alright. Thank you Jessica, Elliot, Mom, Dad, Bethanie, Lily, and Cameron- for spending time with them and loving them. We're going to get through this and pretty soon we can be at home again with our boys and have our family back together. 

So the plan for Ryan is: keep doing what we're doing until his counts come back up. That's easier said than done. His body will continue to deal with receiving Jenny's stem cells. The hope is that they can prevent acute GVHD and that Jenny's cells will slowly take up residence without Ryan's body freaking out completely. That is achieved by using Tacro (an immune system suppressant) and methotrexate (a chemo drug to beat Jenny's cells down some but not all the way). Don't quote me on any of this by any means. Read something on the internet and quote that- it will be more reliable. The doctors and nurses are watching out for signs of GVHD- it can affect any organ of the body but most often targets the digestive tract, the skin, etc. If that starts up, they'll combat it with steroids, which Ryan is understandably afraid of. Another danger is any kind of infection. The guess (although each person has a different experience) is that he'll feel worse and worse each day for a couple weeks, then hopefully things will level off and maybe even gradually improve. They're watching for signs that the stem cells have engrafted (that Jenny's cells have won this battle they're having with Ryan's remaining marrow and leukemia). We'll know that's happened once Ryan's bloodwork starts showing a rise in platelets, hematocrit, etc. That engraftment process can take up to day thirty. Until that time, Ryan's body can't produce it's own blood stuff, so he'll be getting transfusions whenever he gets too low. Blood stuff- so technical, huh? 

That's the update. Let me know if I missed anything big. I want to thank a few people that have helped this week- Jeff, Mitch, and my other friends at OrangeSoda, that have gone above and beyond for me and Ryan. I can't even thank them enough for being so supportive and concerned and kind. My sweet neighbors Julie and Debbie, that were weeding my flower beds when I left yesterday morning. Tim and Scott, for being true friends to Ryan. Buffy, for sparing Tim and sending him out and for being a true friend to me. Gavan and Amy, for being there for us and making me laugh. My family and Ryan's family- we love you forever. Melissa, for having Jonas over Wednesday night and taking his mind off things. For so many friends and family that have shown their love and concern for us through calls, letters, texts, comments on the blog, etc. It means everything to us.  

Okay, Kelli, one of our favorite PAs, just came in to go over things. They are going to start him on TPN and more IV fluids today. Mucositis is starting to develop, and since he's just starting into this process and it's still a long way down (in her words), there's no need to power through with the eating. It will hopefully help him get the calories he needs and decrease his pain. Kelli is awesome. She knows her stuff, she's a good listener, you can tell she cares, and she gives us a lot of good information. Ryan is really hopeful that TPN will solve some of the biggest problems he's facing right now. Looks like Ryan isn't going to dictate anything today. Maybe next time. Below, a picture of better days. 

Too Emotional

I've been physically addicted to Restoril since February.  It's not possible to get a good night of sleep in the hospital without some sort of sleep aid.  Anyhow, this has recently created a conflict.  Restoril is a benzo, Ativan is a benzo.  Ativan is the only thing that can really keep the nausea at bay.  The Restoril was making the Ativan less effective, so I talked with the resident psychiatrist and he had me switch to Trazodone.  Trazodone was originally invented as an anti-depressant.  However, even at a quarter dose it makes most people so sleepy that it does a great job as sleep aid.

I've slept better and the Ativan has been more effective.  A side effect I've noticed, regrettably, is that I'm much more emotional on Trazodone.  It isn't making me feel sad or happy, it's just making it difficult for me to contain the emotions I normally have.  That means lots of weeping, etc.  Weeping isn't good.  It sets my eyes up as a source of infection.

The troubles for the day have been the shameless weeping, hiccups (thanks to steroids), increased fatigue (due to loss of blood product), and an increasingly dry and tender mouth.  I'm still hoping to avoid mucositis.

The good parts of the day involved visiting with Jennifer, who has been going through a painful donor process for me.  I was able to weep unabashedly for her, give her a hug and a kiss, and visit with her awesome supporters and second family, the Porrit's.  I'm still not sure if she has to come do it all again tomorrow.  I hope not.

This morning I managed to shower.  I performed 60 squats, 60 lunges, 5 minutes of hand exercises, bicep and back exercises, and a bit of ab work.  It was a good exercise day.  I paid for it later with exceptional fatigue.

Later I spent an hour and forty five minutes replacing the LCD display on my ridiculous 17 inch gaming laptop.  I like the 1920x1080 matte screen.  It came with a 1600x900 glossy, pooh to that.  Sadly the screen I purchased had a defect.  Today I installed the replacement, it's perfect, not a single dead pixel.  I'm now nearly 4 hours sunk into replacing displays on this laptop.  Meh.  I'm happy now, it's so pretty.

Tim has been here for the past week, continuing to prove himself as my most dedicated supporter and loving friend.  He was a bit late today showing up to the hospital and I'm afraid I wasn't much fun to be around, but that didn't stop me from weeping when he left for the night.  He'll be back tomorrow.  I'll still be on Trazodone, I'm sure his shirt will be drenched in my tears before he heads back to Boston tomorrow afternoon.

Tomorrow is my new birthday. I will receive Jennifer's stem cells.  Well, they're mine now.  It should be very anti-climactic if all goes well.  Emily and Tim will be here.  I need to get my beauty rest in preparation for the glorious day.

Today has been a good day.  I'm tired, weepy, haven't slept well, and I miss all my peoples.  But everything is going as well as one could hope.

The picture of the day, an updated photo of Scott Ashby, Tim, and myself.  I managed to wear the Hahvahd shirt.  These photos are 16 months apart.  Tim is presently built like a tank.  I couldn't imagine two better friends.  And now I'm weeping again.

Once, Twice, Six Times Irradiated

It's Sunday morning.  Saturday was the last radiation treatment.  Today we'll be starting me on the highest dose of cyclophosphamide I've ever had, given over a very short time.  It will be followed by Mesna, this is to prevent bleeding ulcers in my bladder, and vast quantities of lasiks and sodium/chloride/potassium water solution.

Historically I've done will with cyclophosphamide.  It makes me lose my hair.  Which is a bit depressing, as I am just now getting my hair back for the first time in 3 months.  Otherwise it just makes me feel bloated and need to pee often.  Well, it does do one other funky thing.  These little red marks appear all over me and they are sore to the touch.  Then after a few days they sort of pop and die, they are deep under my skin.  Afterward I have little scar blast marks in those locations for the rest of forever.  It's exactly as sexy as it sounds.

The last few days have been good.  Tim, Scott Ashby, and Emily have all been visiting regularly.  I have nausea issues but they're not so bad.  From what I've been told, things get bad during the next 2 weeks.  That is, if things are going to get bad.  Here's to hoping they don't.

I look forward to hanging out with Tim today, and possibly replacing a laptop screen.  I'm so nerdy.

I hope everyone is enjoying the beautiful weather.  I love it.  Last night Scott, Emily, Tim, and I escaped the hospital and went across the street to a chocolate factory run by little people.  I had a shake.  It was tasty, considering that I can't really taste anything right now.

Perhaps if I'm lucky I'll get to visit Grandpa Wilde the next time he visits the LDS Hospital.  I'm in room East 848.

Again, thanks go out to Jessica and Elliot for taking such good care of my children during this time.  Thanks to all that read these posts and double thanks to those who respond.  It always lifts my spirits to know others care.

Alright, that's the update.  Let it be complete with a picture and an expression of my undying heartfelt love for Emily my hero, guardian, defender, and nonpareil.

The picture, my soon to be lost, though only recently acquired, facial hair.  Might I add, the eye on the left seems freakishly higher than the eye on the right.  Perhaps radiation is melting me.  Maybe it was an odd angle with the camera.  Maybe my head has always resembled a potato.  Whatever the answer, it's working for me.  My beautiful wife has never complained about it.

Literary Favors

This is Emily, posting for Ryan today. He's doing pretty good, but if he sits at this laptop to type, he's sure he'll lose it. "It" being dinner. But hooray for eating dinner. If he keeps his calorie intake at around 1600, they won't make him go on TPN. Ryan has done so well during these first four days of radiation. I'm proud of how tough he's been, how positive he has remained, and how hard he's tried to keep eating and moving around. The nurses that work in radiation therapy are very kind. For Ryan, they play music from his iPod in the radiation room, which echoes out to the whole office and waiting room. Radiohead, Beatles, White Stripes- they seem willing to play anything. I find that very sweet. Tomorrow we could see how Rage Against the Machine goes over. (For me, they leave a puzzle to work on in the waiting room. Today I finished it. So satisfying.) Ryan says each day has been a good day. Looks like we've found the right anti-nausea cocktail to help him get through radiation. We're hopeful it will keep working. The ice packs to the neck after treatment also seem to help him a lot.

Tim arrived last night, visiting all the way from Boston. We really appreciate him taking the time to come, and we appreciate Buffy for holding down the fort while he's gone. Ryan says to mention that Tim is ridiculously buff. It's true.

This blog posting stuff is not as easy as Ryan makes it look. I feel like I'm talking to myself on an answering machine. Anyway, the plan for tonight is to keep dinner down, try to get some decent sleep (trying a new sleep med tonight), and maybe do a couple laps around East 8 if I can talk Ryan into it. That's gonna be a tough sell.

The view out the window is not too shabby. Actually, when they admitted him on Monday, it was to a room that had a view of the other side of the hospital and a sliver of sky. I actually asked the charge nurse if they could move Ryan to a room with a view. That's how much I love him. So they did, and though the room is small, you can see mountains, the avenues, what we believe is Rice Eccles Stadium, and the U on the mountain. Lots of sunshine. Since Ryan will be here for so long, we're thinking about sprucing the place up a bit. Maybe some wall art. A mini fridge. Better wall sconces. I don't know, but we'll think of something.

So, two more days of radiation, then two days of chemo, then a day of rest, then the transplant. Jenny will probably be starting neupagen shots to help produce more marrow for Ryan. She is not in for fun times, but she knows this and still seems really happy to do it. We love her.

Hopefully Ryan will feel good enough to post tomorrow because I think this has been a little painful for all of us. Hope you all have a wonderful Thursday night. Below, the radiation room and the "cage" that Ryan stands in for most of the radiation treatment. The bed near the front is where he lays for the extra cranial radiation. This picture was when they were adjusting it for him. During the treatment, no one is in the room with him but they watch him on video and pause if he needs them to.

Radiation is bad, mmmkay?

For those of you who have never seen South Park, you've dodged a bullet, congratulations.  This is in reference to the post title.  Mr. Mackey, you're the bee's knees.

Physically, today sucked it up.  Mentally it was so-so.  I will rate this day at one donkey on the Clydesdale Scale, which goes as high as ten Clydesdale.  It could've been worse, it could've been a Shetland pony.  And you are correct in believing there is no such thing as this scale.  Never the less, this is the scale we'll be using for now.

My everything hurts, and it hurts quite a bit.  I've had 8 saltine crackers and a diet Sprite since 8 am.  Anything more won't stay down.  I do not, and let me be perfectly clear about this, recommend that anyone ever receive radiation treatment.  My nurse has kindly informed me that each day will be worse for some indefinite period.  She's a sweet lady, really.  But sometimes she is honest and that's not great.

Right now the game is all about disavowing my physical reality and finding any and every escape that allows time to pass by without me noticing just how much awful is presently occupying the same space as my body.

Well, it is time for bed.  Not sleep, but the general act of lying in bed.  I will attempt to distract myself with something humorous.

As for the rest of you, keep avoiding radiation.  It is the smart thing to do.

Shout outs go to: Orange Soda, for taking good care of Emily.  Emily, for being better than everyone else at everything of consequence.  Elliot and Jessica, for taking care of my sweet boys.  Everyone who takes the time to read this, thank you for caring about my family.

The picture of the day, me after radiation therapy.  Once again, that isn't a healthy glow, that's a rash:

Radiation Starts Tomorrow

Everything is packed. I'm prepared for my 6+ week stay at the LDS Hospital.  We'll be there tomorrow morning at 8.  It will be a unique opportunity to practice self control.  My goal is to be as pleasant and relaxed as possible regardless of physical or emotional distress.

Negativity is the reason I haven't posted recently.  The last time I started writing a post, which was Thursday, I had to keep erasing paragraphs because they were such downers.  After 25 minutes I gave up.  You've got me back today.  I'm going into bone marrow transplant feeling happy and free.  I need that to last for the rest of my life.

There isn't a lot of update.  The last week was a bit rough.  The kepivance has been unpleasant.  Kepivance is a drug that stimulates the growth of epithelial cells.  They've administered it over the past several days.  The purpose of the drug is to thicken the lining of my mouth and gut.  The hope is to avoid severe mucousitis.  Anyhow, it has thickened up all of the epithelial cells in my body.  My fingers are thick, my face is red and breaking out, my tongue feels like it's been covered in lard, and food has lost all flavor.  This is all better than bad mucousitis, where a patient will simply be given lidocaine and morphine for weeks while they're fed through a central line.  I'll include a picture for you here at the end of this post.

I've had good days but I haven't been able to recognize them, not with the attitude I've had.  I'm working my way back to a more pleasant perspective but that's been a slow process.  I'm almost back.  Just in time to be laid low by radiation.  So you may not see a lot of posts from me in the near future.  However, Emily has told me that she will post here to keep you all up to date.  I wonder if she'll allow for a bit of dictation on my part.

There is a thought experiment that I was performing earlier today.  The idea was consider what you would do if you only had five minutes left to live.  The answer came to me immediately and I acted on that answer, despite the fact that it was only a drill.  My answer was to express my love to those who are most dear to me.  Jonas was the closest, so I went and told him that I loved him.  Love, in its many forms, is the only message and impression I hope to leave behind when I'm gone (not that I'm going anywhere).  

My actions have too often been self serving in such a way that my love for others isn't reflected.  I don't have time to regret that fact.  Instead, it is simply my hope that I can change for the better and leave a more admirable impression.  I realize that I've been on the quest to improve in this regard for 24 years.  Here is to another 24 years of trying.

Enjoy the picture of the day, this one isn't pretty.  I'm rendering it in a smaller format.  I appear oddly chinless, almost perfectly oval, and generally acne-ridden.  I'm sorry if you were trying to enjoy food while viewing this photo.  That is a rash, not a suntan.

Post 50

Though the posts have grown further in distance, I'm still posting.  In one week I will be admitted to the hospital to begin radiation therapy.  Ten days after admit I will receive stem cells harvested from my sister Jennifer.  All of this done hoping to cure my T-ALL leukemia.

This morning I had a CT scan at LDS.  They were worried about some inflammation they saw on my lungs in an x-ray from the 8th.  Hopefully they find nothing interesting as that could complicate the bone marrow transplant.

Tomorrow and Sunday are lined up as my only breaks for the coming week, other than that I'll spend a part of every day at the LDS Hospital.  On Wednesday I have a consult with the physician to sign consent forms regarding bone marrow transplant.  Thursday, Friday, and Saturday I'll be up there for a drug that thickens the cell lining of my tongue and mouth.

During my visit this morning I met two other patients, both ladies between the ages of 40 and 55.  They both spoke with me about their treatments so far.  Both have been through a bone marrow transplant.  One has relapsed and is now receiving another treatment.  Talking with them about their experiences was enlightening.  Hopefully I'll be able to talk with them again soon.

I've had a rough week.  Yesterday and today have been better than the 4 days that went before.  There was an anti-depressant I went on, the physicians advised it as a preventative measure, and I had to quit taking it a week or two ago.  It made me very very tired.  Since getting off the medicine it has left me acutely aware of pain and riddled with anxiety.  The pain and anxiety issues seem to be wearing off.  It was the type of medicine that you are literally supposed to wean yourself from over 5 months.  Yeah, no thanks.  I did it cold turkey and paid the price up front, I wouldn't have it any other way.  I'd rather be anxious and awake than debilitated with sleepiness.

Diablo III, a video game, comes out at midnight tonight.  That's midnight Pacific, it matters.  So you won't be hearing much from me for a while.  You know.  Because I need to be playing Diablo.  Emily and the children will suffer the most.  Hopefully they will remain strong, during this, my great time of unavailability.  We'll see, maybe I'm kidding.  A little bit.  Maybe.  But probably not.

In summary, life has been grand for the past 5 days.  I look forward to playing Diablo.  Cancer sucks.  Bone marrow transplant, though possibly life prolonging, also sucks.  You all are wonderful.  Emily is better than every one else, you aren't the only one thinking it.  Emily's awesomeness is an objective reality, not merely a subjective opinion espoused by many.  My boys are beautiful, intelligent, often a bit difficult, and soon to be someone else's burden most of the time.

Is there anything more to say?  Let's cover some random thoughts:  Elliot and Jessica, you guys are awesome, not the lip service awesome but the real awesome.  I often wonder how you do it all.  Ashby's, thank you for always being there for us.  My dear brother Scott, you haven't talked to me in a couple of weeks - give me a call.  Jennifer is the best big sister a brother could ask for, all of this has been a huge hassle for her and it will soon be a good deal of physical pain as well.  Emily's Mom, I'm sorry I didn't get to see you on Mother's Day - I hope yours was spectacular.  Also, Emily's Mom, thank you again for all of your help with the boys and the delicious meals.  Valerie and Jacob, thank you for your help with the boys and for maintaining a close relationship with us.  Jeremy and Chelle, best of luck with the practice and thank you for the gifts, we miss you.  Terri and Ryan, thank you for being our friends and for the future Sunday favors.  Erin, I love you, give me a shout anytime and I'll harass you just like a big brother should.  Gavan and Amy, visit soon - it has been far too long.  Mr. Al Walter, I'll be there for a game of poker with you as soon as I can - In the meantime you should call or visit sometime, I'm wondering how your life is going.  All of my Ancestry and OrangeSoda friends, thank you for keeping tabs, thank you for keeping me in mind, and thank you for being my friends.  Many of my friends and Emily's friends have gone unmentioned here.  That'd be a long and difficult list.  This giant awkward paragraph was just a stream of consciousness.  Hopefully you've enjoyed it.

The picture of the day.  Tim is coming to town to visit during my radiation therapy.  In honor of that I present you with a picture of Tim, Scott Ashby, and myself: