Thank You Easter Bunny

Last night I tried (unsuccessfully) to blog while under the influence of Oxycodone.  After crafting the opening sentence no less than five times I gave up.  I might have continued to push if any of these attempts were at least consistent in topic.  Instead they ranged from the problem with Easter Bunnies that don't talk, to the worst shart of my life.  I was unable to get any of the topics out of first gear, so I just gave up and took an Ambien.  I woke up this morning with little recollection of the night before and the weird sensation that I'd gotten up in the middle of the night to ride the Schwinn.  The nurse informed me that we had wild storms last night; i just smiled and looked over at my bike.

My undoing seems to be the result of overzealous exercising.  Yesterday, despite getting winded on trips to the bathroom, I did 25 dips, 25 pushups and 30 crunches in the morning, later a couple of laps around the hospital, and finally I rode the Schwinn Comp for 25 minutes.  Each effort began in severe reluctance and ended out of breath, but the voice in my head kept reminding me that I'm determined to keep eating and exercising through all of this.

I really like listening to bluegrass when I ride bikes.  The rhythm, typically based on that of a train, makes me peddle faster.  It's irresistible; I can't keep myself out of rhythm with the music.  This habit used to be rather embarrassing when Missy and I had a gym membership.    I'd start doing squats, and inevitably something like Nelly would come on the radio.  I'd find myself powerless against squatting up and down to every beat of "It's Getting Hot in Here".  Anyhow yesterday I set the ipod to the Weary Boys, and began to whip up a frenzy on the bike.  Their preferred tempo tends to mimic that of a high speed commuter train as oppossed to a slower more sensible cargo train. When I got off the bike, it felt like a small man had been punching me in the stomach with each peddle stroke for the past 25 minutes.  Taking a deep breath, which I really felt like doing after this effort, hurt even more.  Gasping for air, I called the nurse, who called the doctor, who shook her head and told me to take it easy next time.

Today I'm feeling slightly better.  I still can't take a deep breath, but no need for painkillers.  Needless to say I've gotta switch bluegrass bands for a while.  The good news is that while I needed yet another blood transfusion due to low Hemoglobin, my platelets are up and my WBC (white blood cells) are up as well.  Once my counts return to normal I can go home. Perhaps I'm rounding the corner?  I'd love to get home in time for Easter, but its looking more like my reprieve will come a few days after. 

Which brings me to the Easter Bunny.  The Easter Bunny is creepy; plain and simple.  Right up there with mimes and clowns.  So I don't blame my kids at all for being freaked out by him/her/it.  In fact, as I'll explain later, I encourage them to be skeptical.  I relate this story as it was described to me by my wife, who took the boys to the mall last weekend for their first introduction to the Easter Bunny.

  

While Brogan (4 years old) attached himself with a vice-grip to the back of Missy's leg at the mere sight of the Easter Bunny, Ethan (2 years old) ran right up and introduced himself with confidence.  "Hi Easter Bunny"...nothing.  Just a silent wave from a fully grown stuffed animal wearing the same freaky smile he had on his face 10 minutes ago.  Still Ethan gave it one more try.  "Hi Easter bunny"...crickets, a blank stare and a hollow smile.  That's when poor Ethan decided it was time to run.  And I don't blame him.  I would have run too.  I once saw an episode of Cold Case where people in furry animal suits got together to rub on one another.  Anyhow, for some reason Ethan's distrust became Brogan's inspiration.  I like to think it's because Brogan has embraced the role of Big Brother Superhero.  He stepped out from behind mom's leg and boldly proclaimed that he, despite the obvious danger, would have his picture taken with the Easter Bunny.   He gingerly climbed onto the bunny's lap and forced a few twisted smiles towards the camera, then hopped off as quickly as he could.  As they left the mall, Ethan, perhaps emboldened by his brother's bravery, tried one more time to converse with the bunny...who remained cold as ice, smiling, and mute.  Thank you Easter Bunny.

The Climb

My spirits are a bit low today.  No particular reason other than feeling a bit caged in my hospital room.  So instead of getting into some of the technicalities of my induction therapy, which I had planned on doing, I'm gonna ruminate.  

A day or so after the diagnosis I began to see cancer as more than a disease.  It still weighed heavily on me as a burden, but there was another perception materializing.  A few years ago, I did a winter ascent of Gray's Peak in Colorado alone.  Its not a very technical climb, nor would it be considered difficult for an experienced mountaineer, but it still carried with it enough risk to make me acutely aware of my own mortality.  One moment reigns especially clear in my memory.  There is a portion of the route about 1500 feet below the summit that traverses a very steep slope for a 1/4 mile or so.  I stuck with the traverse for a while though I was feeling increasingly exposed.   Looking down I could see the path of my potential fall, which would carry me a long way into the valley below.  To make matters worse I still had my snowshoes on, which I should have replaced with crampons long before.   Traversing a steep slope in snowshoes is fairly awkward, but it would not be safe to sit down where I was and change gear.  Though wiped out and feeling the altitude, I made the decision that kicking steps straight up the mountain, rather than following this exposed traverse in snowshoes was a safer proposition.  So that's what I did.

Now after my diagnosis I am aware once again of my own mortality.  I see the road ahead of me as parallel to my ascent of Gray's Peak.  At the outset of my climb I was pretty full of doubt, and honestly there was some fear.  I hiked into the woods alone around 4:30 PM to an area I'd never been and set up my tent in the dark as a snow fell steadily.  In the morning I'd be embarking on a route I'd never seen before, with the knowledge that there was risk of avalanche.   Arriving from the relatively low altitude of Vermont only the day before, I wasn't sure how I'd feel at higher altitude.  As I began the route the next morning, I had to wade through thigh deep snow, and was exhausted almost immediately.  I was only guessing at times which way the route was supposed to go.  On occasion I ventured way out of my way, unnecessarily expending energy.  But as I gained altitude the route revealed itself.  It became clear that completing it and summiting depended only on my will to succeed.   I believe surviving cancer can be an equally challenging and perhaps satisfying journey.  There is doubt, there is fear, and there are things beyond my control, but I still have control of my will.  When the will is tested the true measure of a man is revealed.   

I thought a lot about that climb in the early days of my diagnosis and resolved that I have the will to beat this thing, though there have been times when I've questioned myself.  A few weeks ago I was sharing a hospital room with a man who was much sicker than I, our beds separated by only a then curtain.  I overheard him explaining to his daughter that while she understood it was time to let him go, he still needed to convince his wife.  He mused with satisfaction that he had lived a good life, raised his children, and felt no regrets.   As I lay there with my head pounding from a chemo induced headache, feeling the weight of all that's happened, and gazing at the long stretch of road ahead, I felt envious.  This man no longer was bound to life and the struggle to survive.  He could leave it when he was ready; no strings attached.  It would be easy.  The nurses would give him all the painkillers he needed to slip quietly and comfortably into death.  For me this was/is not an option.  I'm still young.  I have two little boys and plans to fulfill with my wife.  My parents are still alive and I still have grandparents.  But in the thick of feeling like shit its easy to envy a man with an easy way out.   Now 3 weeks later, as I sit here pain free and feeling good, the envy is gone.   I'm not sure what's become of my old roommate, but I hope everything is working out the way he wants it to.  I am unfinished.

Day 70

So today is day 70 since my diagnosis. I'm in the hospital riding out my 3rd round of chemo and I'm feeling great.  I am at what the doctors are calling my low point, meaning all of my blood counts including my immune system are at 0 or close to it.  I've been receiving regular platelet and blood transfusions.   I have been reacting to the platelets with hives and swelling in my face.  If you've ever seen the movie Hitch, with Will Smith, you'll get the idea.  Actually its not that bad.

I have a dry erase board in my room where I write my blood count goals and other health related goals, like "no fever".  The big one is to keep my platelets above 10 so that I can ride my exercise bike and go for walks.  Yesterday my mental focus on keeping my platelets over 10 worked. Which is awesome because typically everyday I'll get a platelet transfusion and by the next day they are all gone.   I kept them at 14 and had a good session on the bike.  Its a Schwinn Aerodyne Evolution Comp.  As you can see from the photo, this is a high performance machine.  I'm pretty sure the 'comp' stands for competition model.  When I ride it creates a torrent of wind and noise that wrecks my mom's hairdo.   So far I can do 30 minutes...hoping to get up to an hour before I leave here.

Remarkably, despite the chemo, I still have my hair.  I was kind of hoping to lose it, at least in certain places, but apparently its there to stay.  I've lost 40 lbs since all this began, but I've been working hard on eating even when I don't want to in preparation for the stem cell transplant, and I've gained 6 lbs back.  

For those of you who haven't heard I have a donor lined up.  Apparently she's 53 years old and a perfect 12 out of 12 match.  While I would prefer to have 21 year old male viking, stem cells are stem cells.  My mom says I'm going to get hot flashes now.  Anyhow, the plan as it stands now is to head to Dana Farber in 4 weeks for the transplant.  I can't wait to get that over with.

How it all began

If only I had TMJ

Mid January 2011, things started getting weird.  I wasn't feeling incredibly motivated at work.  I felt tired and unfocused.  Then one night I started feeling an aching pain in my cheekbones and teeth.  The pain began to radiate down my neck.  I had just been to the dentist and thought, "hmm maybe I have an infection".   Of course Missy caught me standing in front of the mirror with my mouth open as wide as it could go (which those of you who know me can verify...is pretty wide.  Think tennis ball) trying to peer inside my mouth.  To my horror I noticed a small black spot on my gum.  The next morning I went to the walk in clinic to ask them about the pain in my face, the mysterious black spot, and also to have them check my urine, which Missy kept reminding me was really frothy (like a head of cheap beer in the toilet)...sorry for the details.  They told me they had no idea what the black spot was, and if anything I had TMJ, and that my urine was fine.  They gave me some pain killers and I went on my merry way.  I made an appointment with the dentist just to be sure.  He told me that I didn't have TMJ, but I should stop eating bagels or anything really chewy for a while to give my jaw a break.   He said the black spot was an amalgam tatoo, which often gets left behind by dental tools.   Ahh, my first tattoo.   Not quite a bad ass eagle across my chest, but a tattoo all the same.  As I left his office feeling somewhat relieved, i thought about buying a motorcycle...with a sidecar.

Crazy...

Soon after the trip to the clinic, I began experiencing sharp pain in my lower back that radiated around my hips into my groin and down the inside of my leg to my knee.  In fact I remember limping into the dentist office, never imagining that the pain in my face and the pain in my back could be connected. The back pain I was sure I had an explanation for.  Over the holidays I had done a lot of snowshoeing.  One particular day I carried Ethan on my back, and hauled Brogan in a sled, a mile up the ridge behind our house.  Shortly after that Brian and I did a 2.5 hour slog in the Hinesburg town forest with Brogan on my back.  And not long after that another 5 hour jaunt with Jimmy.  My thought was that I must have aggravated my old nemesis, sciatica.  I went to the doctor, and he agreed.  He prescribed a steriod and some more pain killers, then he sent me home to ride it out.  Next came the most painful night of my life.  

The steroid and painkillers seemed to be working after just one day, and I was feeling pretty good.  In fact I demonstrated to the family just how well I was feeling with a pretty sweet dance, replete with every hip gyration I could muster.  Later Missy and I put the kids to bed and were settling in to watch a movie when I began to feel slight spasms of pain in my back.  Over the course of an hour I turned into a groveling wreck.  My whole body was spasming with pain.  I begged Missy to take me to the hospital or call an ambulance.  However after three weeks of me complaining of one pain or another and going to the emergency room, dentist, and doctor almost routinely, we both were beginning to think I might be going crazy.  She refused to take me to the hospital or call an ambulance.  Instead she informed me that she had been through child birth before and that we were going to get control of this pain through breathing exercises. We got down on the living room floor and did breathing exercises through the night.  It never really worked, and finally at 9:00 the next morning we made the excruciating drive to the hospital.  I was balled up and crying when I walked through the door, and one of the nurses said to me, "So is this your first time with kidney stones"  I said I don't think that's it.  I don't remember too much after that other than a nurse asking me what kind of cocktail I'd like.  Whatever she pushed into my vein took the wind out of me and then knocked me into sweet painfree la la land.  When I finally woke up, they sent me home with still more pain killers and valium, but no explanation.  Funny thing is all of the places I visited were part of the same network, so everyone was able to see all the drugs that had been given to me in the last 3 weeks, but no one seemed to mind or was concerned to look further. 

The Breakthrough

Missy made yet another follow up appointment with my doctor (I was basically incapacitated by this time) and got signed up for physical therapy.  Still no real investigation.  We all thought it was due to overexertion and sciatica.  The first PT session actually seemed to help some, but on the day of the third session I was in severe pain, not in my lower back but my upper back. The pain was radiating around to my chest, and I was having trouble breathing.  I also had very tender spots on my shoulders.  I mentioned this to the physical therapist and he looked at me with what was now a familiar look of disbelief, but he had me do a few movements and then stopped me and said, "I can't help you with this, its not mechanical.  You need to go back to your doctor."  

Already in severe pain, and having  trouble breathing I decided enough is enough.  I drove myself to the hospital, and checked into the emergency room for the 3rd time.  I called Missy, and could tell by her voice she was getting really worried.  She got our neighbor to watch the boys, and came to the hospital.  The doctor that saw me, finally ordered a full workup, blood, urine, ekg.  When Missy arrived she was relieved to hear that someone was finally taking a close look at me.  After a 2 hour wait, the doctor returned to the room and told us that something was up.  My blood counts were off.  Specifically my white blood cells.  She said it could be something as benign as an infection or possibly something "malignant".  While were shocked to hear the word,  neither one of us believed that's what it was.  They decided to admit me and do more tests.  And so on January 31, 2011, I began a 35 day stay at Fletcher Allen hospital.

The Diagnosis

Over the next few days I relinquished what dignity I thought I had.  My first night I had to have a temporary catheter put in by a young nurse, because due to all the painkillers, I couldn't pee.  I asked for a pillow to put over my face, and moaned and groaned the whole way through it.  The poor guy I shared the room with had to sit there and listen to me.  Definitely one of the more uncomfortable procedures I've ever been through. The next day I had my first enema.  They needed to shoot dye up my ass so that they could take a look at my insides.  I had x-rays taken literally of every bone in my body.  I had a full body MRI, and more blood drawn than I believed was prudent.  All of the tests were coming up clean more or less.  They did see my spleen was slightly enlarged and knew my kidney was functioning at only 50%, but other than that nothing was really pointing to anything.  After 3 days of coming up dry, they ordered a bone marrow biopsy as my last check, before they were going to send me off to Infectious Disease or Autoimmune Disorders.  While nothing definitive was showing up, my counts were continuing to go down.  Missy was with me for the biopsy on Feb. 3rd.  They basically drill a hole into your pelvis, aspirate some blood cells and then go in for a piece of the marrow.  The test was done at 11:30 a.m. and at 4:20 the doctor came in to see us.  Their was a harp player in the room (a hospital perk), and he asked her to leave.  Missy was still there and her Mom had also popped in to see me.  The doctor sat down and was definitely uncomfortable...visibly sweating.  He gave us the diagnosis.  At first when I heard the word's Acute Myloid Luekemia, I was relieved. I thought to myself... Ah ha I was right, the pain was real, and now I can get down to the business of getting better.  Quickly my relief was replaced by many emotions.  Knowing how the diagnosis was hitting Missy, watching her try to control her emotions and then hearing her sob when the doctor said Leukemia, was absolutely the worst feeling in the world.  I felt a deep sense of guilt for bringing this burden to our lives, and totally helpless in making her feel better.  In a paltry effort at sounding valiant I said to the doctor, "good...ok...well what do we have to do to fix it".   Needless to say it was a long night.

Greetings

The mere word blog has always bothered me. While its true that most words ending in og refer to great things, i.e. nog, frog, & bog, I can't help but think the word blog belongs to a world that was created much too quickly for anyone to stop and say, wait a minute is this term cool; do I really want to call myself a blogger.  Do men really want to tweet and "friend" each other?  Anyhow despite my misgivings I think the value of the blog itself outweighs its name so here we go.

Presently, this blog is to keep folks up to date on my progress fighting AML.  I'm starting it a bit midstream in my treatment, so over the course of the next few posts I'll bring those of you who don't know the whole story up to speed.

Later.