I'm Only Sleeping

I'm a fan of The Beatles.  Lately I find myself playing "I'm Only Sleeping" in my head.  That last round of chemo has left me tired.  I'm so tired, so tired.  Really, quite tired.  Every time my body comes to a stop all it wants to do is sleep.

Writing these posts is no small task.  My brain stops while I sit here, trying to remember why I'm sitting here.  Remembering what happened over the past few days is tricky.

I believe my brother Scott visited for a few hours on Wednesday evening.  He brought his boys and they played with my boys the whole time.  Scott and I did the usual, which was nice, it had been a while since we'd last talked.

On Thursday my sister Jennifer visited for a few hours in the evening.  Emily made an amazing salad for us.  Jenny and I had a nice long talk, we haven't had many like it.

Emily worked Wednesday but not Thursday.  We hung out in the hammock on Thursday and played San Juan.  If only everyday was so pleasant.

Friday has been a bit of a sleeper.  It's 6:50 now and I'm typing this in bed.  Nothing interesting has happened.  That's a good thing.  The past three days have been good.

Everything will be much more interesting next week.  For now I'll keep enjoying my time out of the hospital.

I'm going back to sleep.  The posts will be more interesting as soon as I'm less tired.

The picture of the day, Jonas and me having fun six and a half years ago:

A Birthday Surprise!

Today Emily and I visited the LDS Hospital for my weekly checkup.  My platelets are still low at 30 but they're climbing, they were at 22 yesterday.  My hematocrit seems to be holding, very low but holding: 22.7 today, 22.8 yesterday.  The low hematocrit leaves me a bit light headed.  My white blood count is attempting to rise.  Neuts are steady at 200, mono is up to 400, and I have a band count of 2.  In summary,  I have a minimally functioning immune system.  Hopefully that grows day by day from this point.  I believe everything is trending up and that I'm recovering from the last round of chemo as expected.

I've been scheduled for a bone marrow biopsy on May 1st.  May 1st is my birthday.  Two days after that birthday present I should know the results of the biopsy.  Next Thursday or Friday is the big day.  I will either find out that I am in remission and headed for a bone marrow transplant or I will learn that I am not in remission.  If I'm not in remission I become a viable candidate for many studies dealing with T-cell ALL.  We shall see, 9 days from now.

Sunday, Monday, and Tuesday have all been great.  Time was spent in a hammock.  A park was visited.  Pizza, noodles, and salads were consumed.  Emily was, as she always is, awesome.  The boys have been a lot of fun; they made their own tie-dye shirts, with help from our tenants.  That's all the update you get on the day-to-day.

Haiku time:

        - My Emily -
You share my hardship
You inspire my conscience
You sustain my whole

The picture of the day involves Emily, Jonas, and Max enjoying the hammock, 3 and 1/2 years ago:

Naps > Titles

Thursday happened.  It did.  I'm pretty sure I was there.  But I have no recollection of it.  It must've been a good day.  I believe Gavan came over for lunch, that was the highlight.  Maybe Emily can help me with the details later.  I'll update you later if I've missed anything interesting.

Friday I remember, Emily worked.  Max and I did the school thing and then we played outside, sat in the hammock, and had broccoli and cheese for lunch.  I did the dishes twice and forgot to do the laundry, which I plan to do today.  My sister Erin visited for a couple of hours between 4 and 6.  She was involved in an accident on her way home.  An SUV hit in to the vehicle behind her and that vehicle hit her.  Her car is still drivable but her neck is hurt.  I'm still waiting for the details.  For some reason her airbags didn't deploy; this caused her to eat some steering wheel.  That low point is not the end of Friday.  Emily's aunt and uncle dropped by with some homemade rolls and soup.  I love Denise's rolls and the soup is one of my all time favorites.  That was a wonderful surprise.  The end of the day was a date night with the Ashby's.  We visited from about 7:30 to 11.  Good times were had by all.  Friday was a good day.

Saturday has been fun.  I played outside with Emily and Max, laid about in the hammock, wrote this post, and even considered doing the laundry; I also really need to get to the dusting today.  There is no interesting medical news at this time.  My neuts are lingering at 200.  I expected them to jump a bit more by now but they haven't and that's alright.  This weather is great and I much rather be home than in the midst of a bone marrow transplant.  Saturday is shaping up to be another good day.

Everyone who can should get out and enjoy this weather.  I'm tired.  The nelarabine has left me perma-tired.  So I'm going to have a nap now.  Enjoy your weekend.

Here is the picture of the day.  My favorite person with one of my favorite people.  Such sweet beautiful peoples I have.

Rub-A-Dub-Dub

Tuesday involved Emily staying home, enjoying her viral infection.  I went up for a visit at LDS hospital. I left at 1 and made it home around 5:30.  During the visit they stole 100 mils of blood from me for a variety of tests they need to run in preparation for the bone marrow transplant.  The event was uneventful otherwise.  Emily's amazing chicken salad is no more.  We ate it along with 24 croissants in a period of 3 days.  Maybe it was 4 days.  Either way, that's 10,000 calories of croissants and chicken salad.  I didn't think we could do it.  Tuesday was a good day.

Wednesday, today, has been nice.  Emily and Max both seem to be doing better with their colds.  Emily went to work and seems to have had an enjoyable day.  I played Monopoly with Max, did the dishes, had a CBC drawn, received a platelet transfusion, didn't eat or drink enough, and worked with Max on his schooling.  This evening Emily and the boys will be leaving for a celebratory dinner at Emily's parents' house.  There is word on the street suggesting that said party will result in a steak dinner for Ryan.  Yummy.  Today has been a good day.

So, my last post bored me.  And the first two paragraphs of this post bore me.  The cause of this boredom, I believe, is that I'm not a poet.  I don't enjoy providing brief summarizations of my recent past.  What has happened isn't nearly so interesting as what is happening or what might happen.  I'll keep providing the boring updates, but only because my audience demands it.  Just know that I'm boring myself and I do so on your behalf.  This paragraph, on the other hand, has been very entertaining to write.  Yes, don't concern yourself with my boredom.  I always find a way to entertain myself, sometimes at your expense, which only seems fair.

My sister Jennifer, Emily, and I are nearing our grand adventure in bone marrow transplant.  Jennifer is committed.  I haven't heard of any red flags.  Insurance has signed off on the procedure.  In a week or three I'll get another bone marrow biopsy.  At that point there will be new information and decisions to be made.  If I'm in remission at that time we'll prepare for the bone marrow transplant, likely starting with 6 days of full body radiation therapy.  Good times.  Jennifer plans to get milked for stem cells, Emily plans to be my primary care giver, and I plan to survive and recover.  We three, with the support of dozens of others, will have quite the adventure.

The picture of the day, three men in a tub:

Really? Four Days, Again?

It's Monday, isn't it?...  And I last posted on Thursday.  Another four day gap in my posting efforts, that's weak.  We'll see if posting frequency changes for better or worse in the future.  My guess is that it won't get better.  I'll surely write less once I start radiation treatment.

Friday Emily worked and I stayed home with the boys.  I have a difficult time recalling but I'm pretty sure it was one of those deceptive days where it looked lovely out, despite the cold reality.  The boys spent most of the day watching TV.  I don't like those type of days.  My energy was far too low to do anything about it.  When Emily returned from work we ate, watched even more TV, ate again, and slept.  Friday was a good day.  A very tired day, but a good one.

Saturday began with Emily suspecting a cold coming on.  One of our neighbors had a birthday party for her son at Kangaroo Zoo.  Our boys were invited and spent 3 hours of the afternoon jumping on inflatable toys.  Emily and I had some tasty take-out, played a game, and generally capitalized during our kid-free time.  In the evening Valerie, Jacob, and Jack visited.  We played San Juan, Emily won.  It was a fun short visit.  At 7 Emily and I went to AF Hospital where I received another platelet transfusion.  Saturday was a good day.

Sunday morning Scott Ashby surprised us with some fresh donuts and chocolate milk, yummy.  Emily made an amazing chicken salad sandwich mix.  It's all I've had to eat for the past 4 meals.  Emily's cold really started hitting her by Sunday night.  She visited her parents' house in the evening with the boys and returned earlier than usual.  I have no idea how I spent the three hours they were gone.  I know I talked to Tim and I ate a sandwich, I may have also watched the end of the latest Batman movie.  I'm so tired these past few days.  I'm very prone to sitting and doing absolutely nothing, truly vegging.  It isn't pretty, especially when I start to drool.  Am I kidding?  You'll never know.  Sunday was a good day.

Monday was supposed to be a work day for Emily, she only lasted for 3 hours.  She's working from home now, or trying to.  The cold is beating her up, she didn't sleep well last night.  We're all being vigilant in our efforts to prevent me from getting the cold.  It'd be particularly unpleasant with no immune system, guaranteed pneumonia.  Max and I finally resumed his schooling.  Low energy teachers are boring.  I don't think I've successfully reengaged him.  The week of Spring Break was no good for the boys' brains.  It's lovely outside today.  I may put on my mask and spend some time in the hammock.  I haven't done well with exercise, the recent spinal tap has caused issues.  Maybe if I tell you that I'm going to bike today then I actually will.  Monday has been a good day.

The picture of the day is several years old.  Max is doing his best impression of Elton John and symbiote Spider-Man:

Four Days?

It appears that my last post was on the 8th at 9:04pm.  That's not nice.  I feel a commitment to posting at least once every 3 days.  Technically it has only been 3 days and 21 hours, but still.  I blame my lax posting on the fact that I'm home.  It's easy to post in the hospital, I can usually find an hour here or there.  It isn't nearly as easy at home.  At home I'd rather spend time with Emily and the boys.  They're out for the night though, so I have a bit of time to myself.  Let's try to piece the last 4 days together.

On Monday new central line was placed and my PICC was removed.  Emily and the boys visited in the morning.  I'm not sure on that last detail, but we'll roll with it.  I wasn't allowed to eat or drink before the central line was placed.  This created a situation where I didn't eat or drink for almost 24 hours.  That cost me a pound or two.  The best part of the day was probably the fentanyl and versed, the waking sedation used for the placement of the central line.  That stuff is awesome.  It's like being given a hot bath and a massage at the same time.  All of your muscles relax and all of your thoughts float away.  Good stuff.  I don't remember much about Monday but Monday was a good day.

On Tuesday Emily worked.  Around 3 they administered chemo via spinal tap.  Then I was discharged.  Scott Ashby provided escort services home.  For some reason I hadn't thought to ask him for a ride.  Luckily a group e-mail brought my situation to Scott's attention in time for him to save Emily a trip.  Scott works in SLC but lives very close to us.  It was pretty funny.  I played a new version of the "which superhero power would you choose" game with him.  I won't go into it, it's very detailed and the details aren't fully hammered out.  Scott was my test subject for the game.  He played along and helped me to further narrow the rules of the game.  I'll write them down sometime so that others can add to the game.  Tuesday was a good day.

The bit about the superhero game reminds me of two topics I've considered writing more about.  One is a thought I had which I think would make for an excellent novel.  The premise being that we're all powerful beings who have plugged into this life/world as part of a game that limits and thus amuses us.  Everyone knows that if you were all powerful you'd get bored; It'd be even worse if you were all knowing.  So perhaps you'd virtually cripple yourself and live out a life in a false linear existence as a form of entertainment.  It'd certainly add variety to your existence.  Perhaps I'll elaborate another time.  My brother has heard the one hour version of this idea more than once.

The other topic is in regards to my parents and the idea of living life with an eye to the journey versus an eye to the destination.  My father seemed to always be hoping to achieve something, he rarely seemed content with a given moment.  My mother, on the other hand, seemed happy most of the time.  She usually focused on the moment and the people around her.  When my father passed, I felt sad for him.  When my mother passed, I didn't feel sad.  It's taken me a long time to be able to succinctly articulate why I felt how I felt, but this is why:  My mother enjoyed the journey, she lived a happy life and died.  My father didn't enjoy the journey, he lived a strained life and died.  I was sad because he'd largely missed his opportunity to smell the roses.  There was no reason to feel sad over the death of my mother, other than selfishly.  She had a wonderful life and was a beacon of happiness and hope in the lives of those who knew her.

On Wednesday I recovered at home.  I couldn't exercise, having recently had the spinal tap.  Emily had the day off.  Jonas went with Andrew to an event where he played with and programmed Lego Mindstorms, now he wants some.  Max, Emily, and I spent most of the day playing games.  I can not really remember much of yesterday.  I'm really tired and my brain is giving out in a big way right now.  It was a good and fun day.  I am always happy at home.  Alright, I'm cashing out on Wednesday.

Today Emily spent the day at home again, which was awesome.  The boys went and played with Bethanie and a cousin from 10 to 5 at Emily's parents' house.  Emily left at 5 to visit her parents for a meal and to pick up the boys.  In between 10 and 5 we had a tasty lunch, exercised, talked with my sister Jennifer for 2 hours, went to AF for a CBC, picked up some prescriptions, and generally had a good time.  It's been another good day.

On the medical front, if all goes well, I'll be looking at proceeding with the bone marrow transplant in 3 to 5 weeks.  In the meantime I will try to keep everyone up to date.  For the next two weeks we'll be in wait-and-see mode.

The picture of the day is a self-shot taken only days after learning of my relapse.  I do not appear to be amused, though I do appear to be slightly blurry; perhaps the two are related.  This reminds me that I miss hair and that my version of expressionless comes across as disappointed or upset:

I'm an ENTJ

Ryan and Christy visited with me on Friday.  They gifted me two yoga bolsters.  For those who don't know, I didn't, yoga bolsters are very firm pillows that don't change shape easily.  They're built to help people do certain yoga poses with more comfort.  I'm using them to help prevent bruising.  Christy and Ryan couldn't have had better timing.  My platelets were 38 on Friday, 21 on Saturday, and 13 this morning.  I have point pain and bruising cropping up all over my body.  But I've been using the bolsters and they're helping a lot.  Aside from the bolsters, which I realize I'm pretty hung up on, we had a pretty entertaining conversation that lasted until both Ryans had a desperate need to urinate.  I think we made it over two hours.  Friday was a good day.

Emily arrived Saturday morning at 9:40.  That's quite early.  Thanks go to Jessica and Elliot who took our boys for the day.  Emily and I had a great day.  We talked, pretended to nap, ate hospital food, and visited with Gavan and Amy for a couple of hours in the afternoon.  Saturday was a great day. There is absolutely nothing I enjoy doing more than spending time with Emily.  She's so pretty, nice, and sweet.  She even smells good.  As an added bonus she does a wonderful job taking care of me, the boys, and all of our shared burdens.  That's right folks, she is the whole package.

Scott Ashby visited for a few hours today.  He offered me a break from hospital food.  Today I had, for the second time, the Taco Bell Dorito's tacos.  They're very tasty.  We discussed all of the usual stuff then  we had fun guessing at the myers-briggs personality types for various people.

It was awesome of Scott to take a big chunk out of his Sunday to be my only visitor.  I think I would've slept through the day otherwise.  I woke up this morning at 7:30 but didn't finish breakfast and get out of bed until 10.  I kept laying down and closing my eyes.  Even now, I'm standing while I type this, I keep closing my eyes.  If I weren't standing there's no way I'd be able to stay awake long enough to type this post.  I received two red blood cell transfusions and one platelet transfusion today.

My PICC, the central line in my arm, became compromised yesterday.  So tomorrow they'll be pulling the PICC and placing the central in my chest.  It'll be the same as the one I had last year.  This needed to be done for the bone marrow transplant anyway.  I think I'm also supposed to have a spinal tap tomorrow.  The central line will likely hurt a good deal more than the spinal tap, if it's anything like it was the last time.

Sunday has been a good day.  I feel pretty beat up and tired.  Tomorrow looks like it'll be a bit rough.  The silver lining for tomorrow is a visit from Emily and my boys.

I've been good with exercise and eating, despite being fatigued.  I do wish I had more creative energy.  There are quite a few things I'd like to do.  Instead the day just slips by with the fatigue biting at me.  Alas, these are the woes of a Ryan receiving chemo.

The picture of the day, baby Max and Jonas being cute:

Time Flies Like an Arrow, Fruit Flies Like a Banana

Tuesday was extra boring.  I was too tired to do much.  I exercised, did the normal routine, then sat in a chair and watched a funny show.  Then I went to bed.  No visitors.  Nelarabine didn't put me into a coma.  Tuesday was a good day.

Elliot and Jessica visited early Wednesday.  Wednesday was an Emily day.  The four of us discussed the merits of different perspectives, living in the present, and fiat currency versus the gold standard.  After Elliot and Jessica left we were supposed to have lunch visitors but those plans were cancelled.  Emily and I made the most of the day.  It was the best day out of the nine I have spent here.  Wednesday was a great day.

Thursday has been nice.  I feel better today than I did yesterday.  I was strangely sore on Wednesday.  Today I'm back to my normal workout routine, I was able to get in 35 minutes of biking as well.  Feeling better is strange.  With chemo you generally feel worse every day; this has been a pleasant surprise.  Today I'm receiving my third dose of nelarabine.  So far I appear to be surviving the nelarabine without too many noticeable or terrible side effects.  The full cost to my health won't be known for several weeks; The etoposide, cyclophosphamide, and nelarabine don't leave the body quickly.

Emily and the boys will be here for a visit any minute.  It's 4:09 now.  I'm sure we'll have a great time.  It'll be like home in the hospital.  A really tiny home.  Where strangers keep walking in and out, uninvited.

So far everything is going quite well with this hospital stay.  I've maintained weight.  My energy levels have been alright.  There have been no blood infections.  I'm knocking on wood and tossing salt over my shoulder.  Hopefully everything will keep going this well.

The picture of the day, me and my homies sitting for a meal:

And Rocky said "Doc, it's only a scratch"

My last post was Friday at 2pm.  That evening Emily and the boys visited me.  I can't recall what we did. I do remember enjoying the visit.  Friday was a good day.

Saturday was Emily's Birth Day.  She visited me for part of the morning and all of the afternoon.  We played San Juan, picked up take-out for lunch, and watched a show.  Later that evening my brother Scott came by, we talked for about 5 hours.  Saturday was a good day.

Sunday started with a visit from Emily and the boys.  We ate, watched a few episodes of Adventure Time, did some homework, and played goofy April Fool's pranks on each other.  They left around 3.  Scott Ashby brought me dinner and talked for 4 hours.  Sunday was a good day.

Today Gavan brought me lunch and we're now partly caught up.  Tim called and we discussed mind enhancing drugs, we're both for it.  And one of my nurses had a deep discussion with me, it went for at least 30 minutes.  Chalk up one more friend for Ryan.  Today has been a good day.

Scott Ashby re-sent a link to a TED talk, a link Emily had sent previously.  I watched it for the first time today and thought it was very relevant, relevant to anyone with a pulse.  Here is the link, you're welcome.  All hail Emily, queen of the good link.

I'm the type of tired best described with colorful metaphors.  My hematocrit was 21 today.  I received two transfusions of red blood.  Despite this I made it through most of my exercises, I didn't get in the 30 minutes of biking I normally do; I may try to squeeze the biking in later tonight.

It's day six.  No chemo today.  I'm through the first 5 day round of etoposide and cyclophosphamide.  The nelarabine starts tomorrow.  The patient information leaflet for nelarabine was pretty funny.  It warns of extreme sleepiness, seizures, coma, numbness (peripheral neuropathy), weakness, and paralysis.  Right under that section there is a section entitled "Call the doctor right away if:" which proceeds to list most of the symptoms previously mentioned.  They were clever enough to not list coma and seizure.  I suppose a seizure or coma is one of those "don't call us we'll call you" situations.

I look forward to seeing Emily on Wednesday.  Until then I will rest and focus on taking good care of myself.  The best parts of this life pass the fastest.  What's up with that?  Human perception is daffy.  When something hurts terribly the passage of time slows.  When we're having a great time it's over too soon.  I recommend that we look into reversing this issue of perception.

It's time to sign off.  If I don't write in the next day or two, no worries, I may just be enjoying a momentary coma.  Here is the picture of the day, redheaded Emily and Max:

No April Fool's

This afternoon when Emily showed up with the boys we were discussing April Fool's Day.  During that discussion it dawned on me that I was positioned to pull off the worst type of April Fool's Day joke.  Of course, I immediately dismissed the idea.  Because making people believe you've died might upset someone.  It might.  Just maybe.  Maybe a little bit.  And I wouldn't want that to happen.  No sir, not me.   There will be no April Fool's Day jokes from me.  You'll need to look elsewhere for shenanigans.

I'll do a more complete update tomorrow.  It's late, I've had my sleep meds.  I don't have the energy to write much more now.  I haven't had time to write during the past two days; this is due to visitors and routine, not health complications.

Random picture, happy handsome husky baby Jonas: