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:

The Update

Updates continue to be sparse.  I need a ghost writer.

Today I was setup with Radiology in preparation for bone marrow transplant.  They gave me four tiny permanent tattoos, two on my back and two on my chest.  They took a piece of soft hot plastic and mushed it down over my face to create a mask.  The mask will hold my head in place during central nervous system treatments.  I had Emily take a picture of me on the contraption that I'll be standing on during radiation treatments.  I will post it later, it's on her phone.

After visiting with Radiology I had three other preparatory meetings, all discussing the bone marrow transplant process.  We were also informed that the whole time line for bone marrow treatment had been shifted.  It appears now that I'll not be admitted until the 21st.  Next week I'll be visiting LDS Hospital Wednesday, Thursday, Friday, and Saturday.  Next week will be busy.

Right now I'm enjoying a big break from the hospital.  I'm not sure what I'll do with the time.  I don't feel entirely well but I feel alright.  I think I'll spend the next six days getting ready for the six week stay in the hospital.  That, or I'll head off to San Francisco and enjoy a short vacation.  We'll see.

It's onto the picture of the day, I'm too mentally exhausted to share anymore thoughts right now.  The picture is a self shot on my part.  Enjoy the chunk of Max's two year old head.

Bone Marrow Transplant

It appears that I'll be admitted on the 16th in preparation for bone marrow transplant.  If everything goes according to plan I will receive Jennifer's stem cells on the 26th.  That's the short story.

The medium story:

I will spend the next 12 days participating in various exams and medical procedures.  I'll spend my spare time reviewing and signing consent forms.  The I being referred to here is really Emily and I.  We will be busy.

Once admitted to the hospital, on the 16th, the first six days will involve radiation therapy.  That will be followed with two days of high dose cytoxin, another chemo drug.  That will be followed with a one day break.  On the 26th, or tenth day after admission, I would receive Jennifer's stem cells.

After that there is, generally, a period of about 30 days where I will remain at the hospital for monitoring.  They will be looking for engraftment, that is when the new stem cells begin to properly act as my bone marrow.  They will also be watching for signs of GVHD, graft versus host disease.  GVHD is common and it can be life threatening.  GVHD is also complicated.  It is a lot like cancer.  There are thousands of forms of cancer.  There are, similarly, many forms of GVHD.

Once I am released from the hospital, which will likely be no less than six weeks after admittance, I will remain under close observation for at least a year and probably more.  More than 50% of patients with similar disease and treatment indicated that a reasonable quality of life returns after one year, according to surveys; for the remaining patients it is two or three years before quality of life returns to something approaching acceptable.

That's the end of the medium story.  The long story is very long.  I won't be sharing it.  Emily and I will live it.  All of you wonderful readers will hear of it and many of you will help us through it.  Children are resilient, I'm counting on that.  Jonas and Max will make it through this as well.

It's late.  I need to go to bed.  It has been another good day.  Rubber bands were shot, wiffle balls were struck.  How could that not be a good day?

The picture of the day.  I wasn't stoned, I wish I was, but I wasn't.  I took this picture while shaving my hair earlier this year.  That first round of chemo had it falling out fast.

Second Remission

Anyone reading this is interested in the results of my latest bone marrow biopsy.  The good news is, according to the printed results, I'm in remission.  Apparently I'm not just in remission.  I'm in remission with no detectable minimal residual disease.  The last time I was in remission the morphology exam detected <1% leukemic cells and the flow cytometry exam detected 3% leukemic cells.  This time there was no detection of leukemic cells noted in either report.

What does this mean?  I don't know.  Emily and I will visit with a physician to discuss options tomorrow.  In all likelihood the plan will be to head for bone marrow transplant within the next few weeks.  All of the studies I've read suggest that even with no leukemia detected you're better off continuing treatment or having a stem cell transplant.  That's what I'm planning to have, a stem cell transplant.  We'll see what the physicians have to say tomorrow afternoon.

That's all of the interesting news.  Hopefully there will be more detailed and firm information tomorrow.  There's a lot more to share but it would only serve to confuse my dear readers if I were to share it now, before the details are in stone.

The past several days have been great.  I apologize for not posting.  I was writing a post yesterday when I first saw the flow cytometry report come in.  I deleted what I had written and waited for the morphology report.  The data has left me thinking for the past day.

Everything else: I'm less tired now, which is very nice.  My blood is playing strange games, neuts rising and falling.  Max and Jonas seem to be doing well, they continue to be great kids.  Emily is as beautiful, helpful, and thoughtful as ever.

The past year and five months has been strange, difficult, and increasingly surreal.  As necessity is the mother of invention, this experience continues to necessitate my reinvention.  While transcending once perceived limits I feel untethered.  Despite the sense of freedom, capability, and willingness to roll the dice, I desire nothing more.  For nineteen years I have wanted only what I have.  It is an interesting juxtaposition of sense and desire.  I've done well.  I know this because I'm happy with what I have, what I have done, and whatever might happen.  Can anyone hope for or believe in something better than happiness?  If so, I've not been convinced of it.

The picture of the day is Max and Megan ensorceled by a stream.  The song Row, Row, Row Your Boat has taken on an entirely different meaning for me over the past year.  Whenever I see a stream I am reminded that life is but a dream and it should be enjoyed merrily.  Hobbits have the same effect, no idea why.