Marshall's music, t-cells, t-shirts and more

Monday, January 30, 2012

There is No Fear in Love

Tuesday was a big day. We received the results from last Monday's bone marrow biopsy and the chemotherapy appears to be working! When I first checked into the hospital 97% of my bone marrow had been taken over by lymphoblasts (cancerous cells). By Monday most of my bone marrow had been destroyed (this is by design) and the lymphoblasts in the remaining marrow had decreased to only 25%. This is good news, but the fight is far from over. The doctors have to keep reminding me that I am on the first mile of my marathon.

Tuesday night was more than entertaining. My good friend Teri had the talented Loraine Horstmanshoff visit for what can only be described as a musical healing session. Here are a few highlights:

Blues Jam 

Some Funky Flute

Aint it Good to Be Alive 

Didgeridoo to the Dome

Thank you Teri and Loraine for a very memorable night. I'm sure the didgeridoo helped blast some lymphoblasts!

For some reason I felt it would be appropriate to start reading the book of Job. I guess I thought that if anybody overcame difficult trials he did. In the first chapter alone, Job's oxen are stolen, his sheep are burned, his camels are stolen, his servants are slaughtered, and tragically his ten children are killed. I was quite inspired by the way that Job handles this devestating news. The chapter concludes as follows:

Job 1:20-21

Then Job arose, and rent his mantle, and shaved his head, and fell down upon the ground, and worshiped and said, "Naked came I out of my mother's womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord."

I love it! Job has a horrible trial and what does he do? He shaves his head and has a positive attitude. Well you can guess who my new hero is :)

In chapter 2 Job's friends come to comfort him during his tribulation

A few days ago AJ turned to me and asked, "Are you afraid of anything?" The question suspended in air between her little bench and my hospital bed. I took a moment to think about it (a rare excersize for me) - usually my mouth just starts yapping before I even know how I'm going to respond - but I want everyone who reads this to know that I really thought deeply about this and I really meant it when I replied, "Honey, fear and love can't exist in the same sphere; and I have had so much love in this room that I couldn't be afraid if I wanted to."

I want to thank everyone who has visited, called, texted, posted, emailed, cut your hair, shaved your head, fasted, prayed, served, cleaned, and showed compassion towards me and my family in any way over the last several weeks.

During this time I have felt surprised, tired, confused, sick, in pain, and even anxious - but never afraid. I'm not sure if I can explain it entirely, but I am certain that we will make it through this adversity.

1 John 4:18 "There is no fear in love; but perfect love casteth out fear."

Sunday, January 29, 2012

Lumbar Laughter

I begin with a few phrases I think doctors and nurses should be trained not to say:

1. "Hmmm... I've never seen anything like this before."
2. "Whoops."
3. "Wow, that's bad."

Monday was a big day for me. I had a triple header scheduled: a lumbar puncture (also known as a spinal tap), followed by some intravenous chemo treatment, and then a bone marrow biopsy to top things off. I did my best to eat a big breakfast before they whisked me off to "Angio".

Angio is short for Angiography - a medical imaging technology in which they use an x-ray type machine to get an better view of my central nervous system during the spinal tap procedure. The first thing that I noticed about the room (other than they keep it as cold as a refrigerator) was that they had some great music playing. I inquired as to the source of the tasteful playlist and was surprised to find that they rock Pandora in Angio :)

As things turned out they hadn't prepared my chemo drugs in the lab yet so I had about 20 minutes to "chill" (don't worry they brought me a warm blanket). Rather than sit and think about the giant needle that they were about to stick in my back, I decided to pretend that I was getting a spa treatment (like acupuncture or something). I put my head back and relaxed to the smooth sounds of James Taylor and Eric Clapton (the unplugged album) and really began to enjoy myself. 

During the procedure (and others) I don't really like to think about what's actually going on so I try to make small talk with the doctors and nurses. As Trent (that's the name of the Physician Assistant) is poking and injecting, a song from Norah Jones comes on. I start chattering, "You know the thing about Norah Jones; she is an amazing musician and song writer - love her voice - but she is plain boring to watch..." yada yada yada and before you know it we're on the last injection (I got 3) and what song comes on: Loggins and Messina, "Danny's Song". If you don't remember this one let me help you out...

Nice Hair Kenny!
And even though we ain't got money,
I'm so in love with you, honey,
And everything will bring a chain of love.
And in the morning, when I rise,
You bring a tear of joy to my eyes
And tell me everything is gonna be alright.

My wife's father and uncles sang this song at our wedding and it always brings back good memories (she has been here at the hospital with me nearly every night and truly does bring a tear of joy to my eyes each morning). 

After a lumbar puncture - spinal tap, LP, whatever you want to call it - they require that you lay flat on your back for at least one hour (apparently if you don't you're prone to get a really nasty headache). So they move me to "recovery" - a nifty curtained room - and I'm staring up counting ceiling tiles when all the sudden my tail bone starts spazzing out. Not sharp pains though - electric tickling spasms! So the nurse comes in to examine my back and I am just giggling like a school-girl. She asks the standard questions: 

"Any numbness or tingling?"
"Shortness of breath?"
"Pain in your chest?"
"Sharp shooting pain down either of your legs?"

No, no, no, no I reply - just tickling spasms at the base of my spine! So she starts poking around and checking for swelling. As soon as she hits the spot I'm hooting and hollering and giggling unbearably. My wife is watching in complete surprise and the nurse says the magic words,

"Hmmm... I've never seen anything like this before."

So what's the game plan? The nurse looks into it, and Trent (the PA that did my LP) is doing another procedure.  She says that she'll have him come check on me when he's finished. I go back to counting ceiling tiles and I figure out that if I hold completely still that the spasms subside. Problem is (and those who know me know this) I can't hold still! Even when I try the moment my foot twiches, or I get an itch and move my leg - zzzzzzzzztt! Spazm, laugh, spazm, moan, spazm, ahhhhh, okay, okay, just hold still... 

Well this goes on for about 20 minutes before, all the lower abdominal constricting leads to another problem... I gotta pee! It's not just a casual, "oh I think I have to tinkle" either, we're talking serious pain and discomfort. You should know that I received two units of platelets that morning which is basically like drinking a 2 liter. 

This is where it gets really interesting - I can't sit up right, so I the nurse tells me I have two options: try to use a hand held urinal while laying on my back, or have her insert a catheter. I wasn't about to let her insert anything so...

It took some serious and intense concentration but I finally succeeded. After this accomplishment you might be tempted to think that my awkward back spasms stopped - they didn't. I kept whooping and giggling and even AJ had to laugh because I am not a ticklish person. 

The whole situation was pretty silly, albeit uncomfortable, and to make matters worse it only takes about twenty minutes and my bladder is complaining again!  After another gravity defying urination the PA finally shows up. He goes down the list of questions: numbness, tingling, sharp pains, yada yada yada... No, no, no, - just laughing till I'm about to pee my pants. To which he replies,  

"Hmmm... I've never seen anything like this before."

After my mandatory hour of staring at the ceiling they agreed to let me go back to my room. The PA said he would check on me in an hour or two to see if the spasms persisted. He said his best guess was that the needle hit a nerve and that was causing the discomfort. Funny thing is that when I got back to my room and stood up the spasms (and the giggling) stopped. 

I thought about it later and I have to consider myself lucky. If the doctors are worried about numbness, and pain, and all I have to do is endure some tickle torture - I figure I got it pretty good :)

Thursday, January 26, 2012

Shave Your Head Saturday

To whom it may concern, 

I have tried everything but cannot figure out how to get rid of the "Cutest Blog on the Block" icon on our page! My apologies to anyone expecting something cute who stumbled over graphic pictures of tubes coming out of my chest! If I could I would change it to say, "The ACUTEST Blog on the Block" :)

It's a good thing we scheduled shave your head Saturday this last weekend because on Thursday I had my first clump. Allow me to explain; I was busy watching the Jazz/Mavericks game when the nurse came in to take my vitals. My blood pressure was a little bit higher than normal - close game imagine that. 

Photo compliments of the Deseret News
So I'm sitting up nervously in my fancy bed, my hands on my head and there is some ridiculous foul call.  I yank my hands forward in protest, arms out, palms up, pleading at the television, "Whaaaaat!" and then I see it, my eyes refocus from the TV to my right hand, and there, pinched between my middle and index finger is a dark tuft of hair. My horror over the foul call has been replaced by a new and more personal horror, "Whaaaaa!" I shout again, but there's no need for a referee on this call: I had my first clump... 

It didn't matter what phase of denial I was floating in prior to that; the clump snapped me out of it. I would soon look like all the others in East 8.

I did my best to hang on to my hair till Saturday, and I would like to thank everyone who went under the razor to support me. The response was overwhelming - with quite a few surprises. My uncle Steven and his family drove up from New Mexico to show their support (a couple with shaved heads) and all decked out in orange leukemia fighting garb. 

Steven's family plus Grandparents and Aunt Martha

My mother's sister Martha is a nurse here at the hospital and is nothing short of amazing. Aside from stunning everyone with her fabulous shaved head, (which even Kezman likes to touch) she has doted over me and checked in on me every chance she gets. 

I'm thinking, "grape vine" I can't even eat grapes!
One day I'm out for my "walk" - gas mask, gown, gloves, you know the drill - and this nursing cart comes flying out from around the corner to impede my course. There's Aunt Martha with three bottles of the most magical lotion I've ever used. She said she "heard through the grape vine" that my knuckles were dry and cracking.

Saturday night my brother's Jordan and Tyrel came and shaved their heads with me. Even my awesome nephew Eric wanted to be in on the fun. It's a good thing Tyrel kept his facial hair too because you can hardly tell us apart. I didn't disclose this to him, but I was tempted to slip my hospital band on his wrist and go out for a night on the town.

I have felt so much support from the many friends, family, co-workers, and others who shaved their heads and got haircuts. I wish I could mention everyone individually, but I fear I might leave someone out. I wouldn't be surprised if beanie sales rose in Salt Lake this week.

Know this: as I sit here stripping the marrow off a bone of string cheese and wonder, "Why does it taste so much better when you string it, as apposed to just biting off the tip?" I am also thinking of each one of your shivering heads. Every frigid quiver you endure brings warmness into my room.

Sunday, January 22, 2012

How Can I Keep From Singing?

My uncle Dale has a song for everything!  Seriously.  My Mom's oldest brother has an uncanny knowledge of underground/folk music and it never ceases to amaze me.  On Thursday he brought me a stack of music. One song was based on a true story about a young father who is diagnosed with cancer and his friends and community rally to support him.  I don't know how Dale did it but other than some minor details I thought I was hearing my own story in a song - it was very touching.  Here's a link if you want to check it out: "Manuel Garcia" by David Roth

Thank you uncle Dale :)

The music was only getting started with uncle Dale's stack of CD's - on Friday my 3rd grade teacher (and family friend) Marsha McBride came to visit with her guitar and book full of sing-alongs. If you've ever watched "The Magic School Bus" Ms. McBride is basically the Irish "Ms. Frizzle". Her class was such an adventure I would have to dedicate a whole blog post to fully explain it. 

Aside from making every other subject fun and interesting (we named a teddy bear "56" so we wouldn't forget what 7X8 equals), Ms. McBride also taught us to play and perform music. I don't remember how she had the patience to sit with twenty-some-odd hyperactive 9 year olds and teach them to play the ukelele! What I do remember, is sitting in a circle and tuning up... "My - Dog - Has - Flees" was our phrase for the pitches of each string (still makes me giggle). 

This is where I got my first taste of what it was like to strum and sing - life would never be the same.  And I'm not the only musician to come out her class either - many of you have probably heard of the local talent John Schmidt; he is also a graduate of Ms. McBride's 3rd grade class.

So Friday Marsha comes by for a surprise visit at the hospital and we get to talking, and then we get to jamming. After a couple of songs, she's on her phone rescheduling her guitar lesson because there is no way she's leaving in 5 minutes; we're just having too much fun. I uploaded a couple of the videos on YouTube; you are welcome to have a listen :)

Speaking of guitar lessons, I have to mention a very special gift I received from Styles Weiler (one of my most dedicated students). Last week he stopped by the hospital and presented me with a "Leukemia Guitar". Its custom design and fashion are said to have special cancer fighting powers. According to Styles I am to keep it with me always because it will "rock away my leukemia". Thank you Styles, you are a true friend.

To wrap things up I have a little bit more to share about uncle Dale. In addition to the Bill Cosby he brought - which had me laughing out loud this morning - he also brought me just about every album that Enya has ever released. I was listening to the "Shepherd Moons" album and track 3 really hit me. I listened to it again and again and the words have now become my personal anthem to beat this cancer.

I researched the song on Wikipedia - better do it now while the SOPA and PIPA legislation are still pending - and found out that the original music was written by a Baptist minister named Robert Lowry. The lyrics are attributed to Pauline T.

My life goes on in endless song
above earth's lamentations,
I hear the real, though far-off hymn
that hails a new creation.

Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?

While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
songs in the night it giveth.

No storm can shake my inmost calm,
while to that rock I'm clinging.
Since love is lord of heaven and earth
how can I keep from singing?

Wednesday, January 18, 2012

Chemo Emo

It hurts just lookin at it :(
One cool thing about being isolated on East 8 is that I have more time with my guitar. Some of the nurses and neighbors seem to like it too (no complaints yet). I even had one nurse comment on how she couldn't believe that I could just sit there and jam and carry on a conversation at the same time. She said she has played piano for over 20 years, but has never been able do that. For me it's very therapeutic.

There was a tragedy on Sunday night though.  The bridge on my beloved Ovation ripped from the body of the guitar! I didn't notice till morning and was utterly devastated. I am next to certain it is due to the arid lack of humidity in these hospital rooms. 

I hooked her up to Willie and tried to resuscitate her back to health, but I think my cancer diagnosis was just too much; she needed a break from all the drama.

Fact: Sodium Chloride doesn't fix a broken bridge.

Don't 'fret' however, my good friend Carson was kind enough to bring me another guitar from home and I am not without.  Plus Carlos (that's the name of my other guitar) is pretty happy to be getting some attention because my LX has bogartted the stage for years now. 

To prevent a future casualty I am down tuning the strings at night and my mother is bringing in a guitar humidifier. So there is no cause for lamentation or discord, - my music lives on in East 8!

In fact, I'm thinking of starting a new genre, "Chemo Emo". Instead of dying your hair black, and wearing skinny jeans, you shave your head and wear sweat pants. Instead of shouting shrill obscenities about the girl that made your blood boil, you hum peaceful melodies about the treatment that is making your blood normal.  And finally, you don't try to imitate The Cure, you find the cure and you embrace it! 

Monday, January 16, 2012

Cancer Vocab

Cancer gives you the opportunity to learn a bunch of interesting words and acronyms.  Here are a few that have recently joined my vocabulary.

Came out the year I was born, 1984
Those of you old enough to know what a vinyl record is may be under the assumption that an "LP" is a "Long Playing Microgroove Disc" - and that's what I used to think; but up here on East 8 (that's what the cool people call our wing) LP stands for "Lumbar Puncture".  

There is a similarity: they both involve a needle.  The difference is that one reads music off a disc and the other goes into your spine. The other name for an LP is "Spinal Tap" - which again to avoid misinterpretation is not just a cheesy 80's mockumentary about heavy metal bands - but a procedure to retrieve/inject fluid from/into your spinal column. The good news for me is that my first LP did not show any signs of cancer in my spine.

This is a fun one. I had to keep from laughing at the first doctor that I saw with "HEMONC" on their name badge.  To me it sounds like something I would call my little brother to tease him. It actually stands for Hematology/Oncology.  

Hematology is the study of blood diseases (what I have) and Oncology is the study of cancer (also what I have).  The Hemonc is the doctor that gave me my diagnosis.  Which brings me to my next term... 

Diagnosis vs Prognosis
I've always understood pretty well what a diagnosis is.  In fact my friends at work know that one of my favorite maxims is "Diagnose before you Prescribe".  This is my way of reminding myself that every situation is unique, and that it can be foolish to jump to a solution before you've really done your homework.   

The term I kept hearing that I wasn't familiar with was "Prognosis".  A prognosis is more than just knowing what's wrong with you; it's forecasting the outcome of the disease and your chances for recovery.  Ironically, I was flipping channels the night before I was diagnosed and I saw the preview for that new movie coming out, "50/50".  Apparently it's a drama about a young man who is diagnosed with cancer and has a 50/50 chance of surviving.  I remember thinking, "That looks pretty cool.  I think I'd like to see that." Little did I know that I would get to star in the main role :)

Now to give you some details about my diagnosis/prognosis: the type of leukemia I have is very rare, especially in adults. According to the Leukemia and Lymphoma Society it is most commonly found in children 1-4 years old (7.8 out of 100,000 or less than 1/100th of a percent).  In adults between 25-29 the number drops to 0.7 out of 100,000 which means that the chance of me developing this cancer was less than 1/1000th of a percent - and all this time I could have been working my odds in Vegas!

The good news is that my chances for overcoming this cancer are astronomically greater than those that I got it.  Although there is no concrete data on recovery rates, my handy pamphlet from the Leukemia and Lymphoma Society informs me that children between 1 and 15 years of age had a 3% chance of surviving in 1964.  In 1975 to 1977 the cure rate increased to 58% and the most recent study done between 1999 and 2006 showed a 89% recovery rate.  

I would ask you to be mindful of a few things when considering my prognosis.

First, contrary to how I often behave, I am not under 15 years of age (adults don't have as high of a recovery rate as children). 

Second, I am participating in a clinical trial being conducted by the Dana-Farber Cancer Institute in Massachusetts. The purpose of the study is to test the safety and effectiveness of certain cancer treatments that are similar to those being used to cure children. 

Third, and most importantly, as my friend Charley - a cancer-patient in the same study - reminded me yesterday, the Lord is in charge of this whole thing. It is His will and His plan. You don't have to worry about some guessing game at 60% or 70%, trust in the Lords prognosis.

Far from fantastic, "lymphoblastic" blood cells reproduce rapidly and out of control. They don't work properly because they are mutated. Your blood stream then gets inundated with dysfunctional scrap and your healthy blood cells diminish. 

Think of it like a football team that falls victim to a crappy recruiter (in my case the recruiter being a chromosome mutation known as hyperdiploidy).  For the first little while everything seems to be fine, but as Recruiter Diploidy brings on more immature and dysfunctional players the team struggles.  Pretty soon they can't even get a first down without tripping over their own linemen. 

During my stay on East 8 I have become familiar with 3 phases of denial.

1. As my good friend Chris often reminds me, denial is a river in Egypt. In this phase of denial, you deny you're in denial by making jokes to change the subject.

2. "I don't have Cancer" This is outright denial.  You'll come up with any excuse to dodge reality: this is all a dream, the doctors are wrong, cancer is for old people, I feel fine, or this is a practical joke.

3. "Cancer's not that bad" This is more on the acceptance side.  You've taken the pills, you've watched your blood counts closely monitored, friends and visitors have come with well wishes. At this point your mindset is: Cancer - no big deal, everybody gets cancer if they live long enough; cancer-shmanser!

Reduced Microbial Diet 
This one made me laugh.  When I first checked into East 8 they told me I would be limited to a Reduced Microbial Diet (sounds pretty serious right?) So I asked what that meant.  The only thing the nurse could tell me was to stay away from grapes. I asked another nurse and she elaborated a bit on how grapes can grow a certain bacteria that isn't always washed off because they are in clusters.  Other than that the suggestions were: avoid fast food (of course) and anything that has been sitting out (naturally).  So in a nutshell they use eight syllables to say what they could in two - no grapes :)

Saturday, January 14, 2012

Daily Bread

Thanks for everyone who sympathized with my disdain of pill popping.  After hearing I wasn't alone, I thought of starting the "Anti Pill Coalition" (APC) - a nationwide movement to engineer a pill that doesn't stick to your tongue, float to the top of your mouth, or leave a vile and unrelenting taste. It was then that I remembered the darn things are saving my life. I can honestly say that I have taken more pills in the last week than I have in the last several years combined.

Now for an update on my chemo treatment.  I last wrote on Day One and we were kicking things off.  Since then I have had the opportunity to try a few more new and experimental drugs; which is generally discouraged, but when you have cancer nobody seems to give you a hard time :)

Chemo Dew
On Tuesday I got some more of "The Red Stuff" (Doxorubicin).  Like I said before, it looks intimidating but it's not so bad. 

On Wednesday I got to try Methotrexate. When I heard it was an appetite suppressant I was going to nick-name it "The Junk Food Drug".  I changed my mind just slightly when the nurse came in with a syringe full of Mountain Dew.  Methotrexate thus became "Chemo Dew".

I have a self correction about the asparagus drug I mentioned in a previous post.  It is not one of my pills. It is actually one of my chemo drugs.

The full name, "E.coli-Asparaginase Cytarabine" is quite intimidating (E.coli, seriously?) so you can imagine why I was a little nervous on Thursday. I showered and put on a pair of jeans rather than sweats because I didn't want to show this big bad asparagus drug any signs of weakness. 

The catch, this one is administered "inter-muscularly". A shot - well four shots actually - two in each thigh. "Luckily" they were able to have two different nurses come in and shoot me up at the same time, so I "only" had to get two sets of two shots simultaneously, instead of four successive pokes (I guess that's better?).  My wife said the only other time I was that nervous was the day I proposed to her!

After all the treatments I was pretty tired on Friday. The good news: I don't have any chemo scheduled till Monday and today I feel great!

Which brings me to the title of my post; D. Todd Christofferson wrote a very inspiring article in January's Ensign.  It is titled, "Recognizing God's Hand in Our Daily Blessings".  In it, he speaks about asking for, and receiving daily bread from the Lord.  

Needless to say my "daily bread" is a little different these days.  Sometimes it's as silly as finding the courage to swallow a grody pill on an upset stomach, and other times it's strength to go another day watching my adorable little boy on a webcam because he has a cold and isn't allowed to come see daddy till he gets better.

The point: life is a day-at-a-time journey.  There is wisdom in asking for and recognizing God's hand everyday. Even with cancer, I have been amazed by, and thankful for the many blessings I have received from the Lord.  Most of which have come to me and my family through ordinary people amidst their day-at-a-time journey, who out of the goodness of their hearts allowed us to be part of it.

Wednesday, January 11, 2012

First Day of Chemo

I would like to thank Bob Williams (Although I doubt he has facebook, or even knows how to find our family blog).  Bob is, and has been the president of the homeowners association since I moved into the neighborhood.  He is a kind and selfless man, always willing to help with a smile.  I really appreciated his visit on Sunday.  He has a great deal of experience with cancer and chemo therapy, and it was good to have little pep talk before the big debut on Monday.

He warned me up front about "the red stuff" (Doxorubicin). It is known as a VESICANT.  For any of you that are like me and don't know what that means, here's the dictionary definition: A chemical agent that causes burns and destruction of tissue both internally and externally.

With a warning more likely to be seen on radioactive waste, you can imagine how excited I was to have this stuff injected into my body.  Even the nurse has to wear an extra gown and gloves for safety. Thanks to Bob, I knew I could live through it so went forward with the inoculation.

Here I am starting to get nervous...

Here I am getting really nervous...

Lisa (my nurse) was so patient, she had to inject the vesicant really slowly by hand for 15 minutes so that it didn't mess me up too bad. 

After "the red stuff" I also got a dose of Vincristine (a mitotic inhibitor) which basically means that it prevents your cells from dividing.  At my towering stature I'm sure many of you probably assumed my cells stopped dividing a long time ago ;)

The other drug I started on Monday is Prednisone.  This is a steroid, and I think my nightly dosage is keeping me up like an energy drink.  My cute little wife can hardly keep up with me while I make laps around the nurses station, jabber and make jokes.  This I'm sure is doubtful to continue as my treatment intensifies, but hey why not have a little fun while you can.

Truth be told, I'm feeling pretty darn good right now.  No harsh side effects, no hair loss, just a lot of bed rest, pills, and pokes.  My blood levels have been steady so I haven't had to receive anymore blood transfusions or insulin shots.  The doctors say that chemo effects everyone differently, I hope that I am among the more fortunate.

Tuesday, January 10, 2012

Tanning Doesn't Cure Cancer but Grandma's Home-Grown Peaches Might

I would like to personally thank everyone who approached me a few weeks ago and said, "Wow, you look awful.  Are you feeling alright?" To be honest at the time I wanted to punch you in the mouth, but in the end it was your cruel honesty that helped coax me into a doctor's office (ask my Mom, this is no easy feat).

What does this have to do with tanning you may ask?  Well, I was feeling pretty self conscious about all the "you look really pale" comments, so I visited the tanning salon to try to fix the problem.

Twelve minutes in the super-ruva-tano-magic and slicked up with tanning lotion - I still looked like the albino in that weird Powder movie that came out in the 90s. The lady at the salon said it could take a couple days for the tan to sink in but when I started peeling white off white I knew the endeavor was a failure.

Bottom line, tanning doesn't cure anemia, or cancer for that matter, in fact, I'm pretty sure causes it.

On the flip side, I had my first real alone time in my hospital room on Sunday morning.  I sneaked down the hall, pulled out the jar of Grandma Joyce's home grown peaches I'd been saving in the fridge, and tiptoed back to my room for some quiet indulgence.

I didn't feel much better after 12 minutes of tanning, but I swear I felt more than back to normal after 12 minutes of Grandma's peaches.

Saturday, January 7, 2012

Life in the East Wing

Me and Papa Willie
First I would like to say THANK YOU to all my family, friends, and co-workers who have called, texted, visited, posted, and prayed for me and my family.

Second, as promised I wanted to keep you all informed on my new life in the Leukemia/Bone Marrow Transplant Unit. Let me just say, they are a little more strict here on the East wing.

For instance, I can't leave my room without suiting up in Hazmat gear like I've got some hazardous materials to clean up.

But what the hey, it makes for some some good practical jokes on the elevator.

In addition to friends and family we've also had many other visitors: doctors and dietitians, coordinators and social workers, PAs and CNAs. My room at the hospital has had quite the revolving door.

After a good chat with Doctor Asch we made the exciting decision to join a clinical trial for ALL (Acute Lymphoblastic Leukemia). What did this mean for me; another exciting bone marrow biopsy!  And after all the poking, twisting, and grinding was over, we were still unsuccessful in getting a sample of bone marrow.  Apparently this is not uncommon when you have leukemia because your cancerous cells multiply so quickly that your marrow becomes ultra dense and difficult to extract (a tid bit of knowledge that I may have liked to know BEFORE we started drilling).  Truth be told however, my experience with bone marrow biopsy hasn't been all that bad - a little painful, but not unbearable.

Put simply the clinical trial regiment is a hybrid developed from the pediatric approach to fighting leukemia because children have shown better cure rates. The Doctors tell me that I am young and resilient... but is it that I am child like or just childish that makes them feel this treatment is for me?

The day starts with an optimistic shot glass full of different colored pills.  One of which I believe is called asparigenace and is for all the little kids that got cancer because they wouldn't eat their asparagus.   

I'm not the biggest fan of taking pills.  In fact I think I had my mom buying children's chewable Tylenol for me till I was about 12 years old. The phobia originated from a violent gagging incident that took place with a hearty orange slice.  Needless to say, I take my pills one by one and go through about two classes of water just to finish them off.

In addition to my morning pills they've also been cranking me full of some fun steroids that hype me up like a pot of coffee.  So that's been pretty exiting.

I had a main line sewed into my chest and neck; a quite uncomfortable contraption that prevents the continuous poking of my inner elbows (which were beginning to look suspicious from a pioneer park point of view) and allows medical staff to extract blood and inject whatever kind of fun medication they would like directly into my heart without any poking around.  Other than appearing like I have 3 gangly nipples its not so bad.  My sweet mother is working on some special seamstress magic that will allow me to wear an undershirt and then pop out the 3 ganglies when necessary for maximum comfort.  Yes, she is a compassionate genius (and may have had some practice with this sort of thing while breast feeding 7 children).

I made a new friend and decided to name him Papa Wheely (pronounced Willie). We are pretty much attached at the hip.  He's a thin wiry guy (kind of resembles a hat hanger) that delivers all the right medicine at the right time. Earlier in the week Willie and I went  for a stroll.  Me in my hazmat gear and him, like a robotic bag of hangers with 3 white mini computers on his belt.  Here is a look down the hall from Willie's eyes.

I'll admit, it's not too exciting up on the LBMT Unit but we make the most of it.  My to do list consists of walking, sitting, using this nasty salty mouthwash, and breathing 10 breaths in a spirometer 4 times a day 
(it's like a slow motion bong without any of the hallucinogenic side effects.) Now I know this all may seem pretty easy but this is just the beginning. 

Currently I'm still in the "Prophase" section of my treatment; this started with one dose of Chemo in my spinal chord and is being followed by three days of steroid injections. My hematocrit levels have been pretty consistent so I haven't had to undergo any more blood transfusions but my steroids have upped my blood sugars so now I've been getting shots of insulin, yay! Let me give a shout out to my diabetic friends!

The real fun starts on Monday when I begin the "Induction" phase; this is when they really start hitting me with the hard drugs that destroy my lymphoblastic B cells (the Luekemia). Here's what they look like. The bad news is that to take out these cells we deplete a protein that other fast growing cells also need.

Lymphoblastic Leukemia Cell

This is what ends up causing all the fun side effects: weak immune system, inflamed digestive track, and most noticeable, hair loss. This week has been a big pep rally, the game starts Monday.  I would appreciate all your support through this time, but please don't visit unless you are in good health because we are going to wipe out my immune system and then build me back up.  The point of "Induction is to send the cancer into remission" if we can accomplish this, I will be able to leave the hospital and participate a long road of out patient therapy (about 2 and 1/2 more years). Huzzah!

Again I appreciate all your support. Thanks to Johnny for stopping by and creaming me in gummy bear black jack.  To Carson and Teri for bringing food, and gifts, and just hanging out.  For my little brother for taping jazz games and playing old school street fighter on SNES with me deep into the night.  To my nurses and doctors for all their hard work and dedication.  To my amazing mom and mother in law for all they do. To the Ward Relief Society for helping organize a babysitting schedule.  Everyone else again for all your kind and thoughtful words of concern and encouragement. And most importantly to my lovely wife for spending every moment she can with me and even skyping in when Kezman got sick and couldn't visit.

If anyone wants to know my personal strategy for battling this disease read the first presidency message in the Ensign for January.  It's A: for a positive attitude, B: believe in myself, others, and the gospel of Jesus Christ, and C: courage. 

Ironically the Jazz are playing behind me in this underdog shot :)

For as my often hyperactive but awesomely inspired cousin Chuck popped in from North Carolina tonight and said, "It's funny how the things you don't want to happen end up teaching you the things you need to know the most."


Friday, January 6, 2012

I've got it 'ALL'

I thought it would be a good idea to let everyone know what's going on with me and my adorable family.

On Tuesday I went to the doctor to try to figure out why I've looked so pale and why I've been having headaches. Dr. Monroy said he hadn't seen me before but I did look exceptionally pale. Everything else looked pretty good so he sent me to the lab for blood tests and I went to work.

About 4:30 I got a call from the Dr. He said my blood counts were severely low. He said a normal hematocrit level is from 40% to 50%. I clocked in at an awesome 15%. Needless to say, the doctor asked me to check in at the nearest emergency room. I let him know that was LDS hospital and he said that he would call ahead to let them know I was on my way. (That wasn't scary or anything)

Here is a picture of the awesome gown I got to wear in the ER.

One of the first tests they made me do was a CAT scan. I told them there must be some mistake because I had clearly noted on my medical paper work that I was allergic to cats. Kezman had fun playing with the metal railing on my hospital bed.

Most everything looked good the first day, but they committed me to a room upstairs for future testing. I couldn't watch the Jazz game on their sports channel at the hospital, so I was forced to watch live coverage of Mitt Romney and Rick Santorem at the Iowa caucuses all night, yay...

Wednesday morning I had the privilege of taking part in a bone marrow biopsy, sooo fun! They drilled into my hip bone and extracted the marrow. They couldn't get enough out of the left hip so they drilled into my right hip too. Then I put my right foot in and spun myself around.

Later that afternoon they broke the news... I've got it A.L.L. (Acute Lymphoblastic Leukemia) - in other words I have cancer - Leukemia.

We've been waiting all Wednesday and Thursday to figure out the specific type of ALL I have. We found out today that it is not Philadelphia chromosome (that's good news because it means I won't have to have a bone marrow transplant right away)

My cancer cells are hyper diploid chromosome 9 - I think that means that they're hyper reacting like a 9 year old.

I'm working with a team of doctors and the outlook is bright. Now that we know the specific type of cancer I've begun the chemotherapy. I will keep all y'all posted. Thanks for all your love and prayers.