Spiritual Leukemia

Being stuck in the hospital gave me a great deal of time for reflection. Some of my favorite afternoons were spent with my Grandpa Reese. He has an abundance of amazing stories (and usually brought junk food). I enjoyed sitting back and listening as he recounted the remarkable events of his 83 years. Thank you Grandpa for the stories and potato chips.

One analogy that I contemplated as I stared longingly out the window of my hospital room was what I have come to call "Spiritual Leukemia". Allow me to explain; cancer - of any kind, not just leukemia - is basically when cells grow out of control. The location of those cells, and the nature of their malfunction determines what type of cancer you have. The point is that cell growth is not a bad thing (it's necessary for life), but when it gets over done or distorted it can have devastating consequences.

This was my view during the 2nd hospital stay

Leukemia is a result of the unrestrained growth of cancerous blood cells. These cells are not functional and basically crowd out the good cells and prevent them from performing their proper functions. If untreated it is fatal. Likewise, there are many activities (work, hobbies, facebook etc.) that can crowd out the aspects of our lives that revitalize our relationship with God. If untreated, these behaviors can be spiritually fatal. It is important to understand that these actions are not necessarily bad, but if overdone or distorted, they can have devastating consequences.

Unfortunately there is no perfect cure for leukemia. There are many methodologies - chemotherapy, radiation, transplantation - but nothing that will guarantee the cancer will be defeated. 

Luckily, unlike leukemia there is a cure for spiritual cancer: the atonement of Jesus Christ. By acknowledging our weakness and having faith in Christ we can overcome even the most egregious habits and behaviors. I conclude with a quote from one of my favorite speeches:

"Don’t think you can’t. We might think we can’t really follow [Jesus Christ] because the standard of His life is so astonishingly high as to seem unreachable. We might think it is too hard, too high, too much, beyond our capacity, at least for now. Don’t ever believe that. While the standard of the Lord is the highest, don’t ever think it is only reachable by a select few who are most able.

In this singular instance life’s experience misleads us. In life we learn that the highest achievements in any human endeavor are always the most difficult and, therefore, achievable only by a select few who are most able. The higher the standard, the fewer can reach it. But that is not the case here because, unlike every other experience in this life, this is not a human endeavor. It is, rather, the work of God. It is God’s work and it is His “glory … to bring to pass the immortality and eternal life of man.” There is nothing else like it. Not anywhere. Not ever. 

No institution, plan, program, or system ever conceived by men has access to the redeeming and transforming power of the Atonement of Jesus Christ and the gift of the Holy Ghost. Therefore, while the Lord’s invitation to follow Him is the highest of all, it is also achievable by everyone, not because we are able, but because He is, and because He can make us able too."

The Way - Elder Lawrence E. Corbridge 

Half Full, Why Not Filled to the Brim

When my wife and I were dating she gave me this pin. She told me that when she saw it she thought, "That's so Marshall" and had to get it. I'm not entirely sure what's optimistic about ballistics but the little character does appear to have a bald head - so we have that much in common.

I've received a great deal of feedback that my positive attitude during this ordeal has been "inspirational". I must let you in on a little secret. The truth of the matter is that I don't have a lot of choices in this whole calamity. I can't choose to not have cancer, all I can do is choose how I react to the situation. I can wallow in self-pity and spend my days lamenting, "why me" or I can choose to find the joy in each day, be grateful, and be faithful that I can make it through this. When you think about it like that the choice is pretty easy.

As I made my many laps around the Bone Marrow Transplant Unit - you gotta get your exercise - I couldn't help but notice the titles of the different rooms and offices. One plaque read, "Mid Level Providers". This made me wonder, if the mid level providers are on the 8th floor where do they put the high level providers? On the roof? Furthermore, what do you tell people if you work for the low level providers; "I'm sorry, we only provide the crappy low level of service. If you wanted quality, you should have signed up with the guys on the roof."

Another plaque read "Consultation Room". Whenever I saw people in this room they seemed very somber and serious. I had the thought that maybe if we changed the name of the room that would help. Why does it have to be a "Con" sultation room... why not a "Pro" sultation room? That way they could focus on the pros of the situation rather than the cons.

This could be a huge opportunity. Think about it; we often invite colleagues to a "conference". What would happen though, if we had them attend a "proference"? Who knows! Instead of conversations people might have proversations. This would lead them to come up with new prostructive ideas. Think! Congress would be changed to Prongress and might actually make some progress! The economy would be transformed into an epronomy. Unemployment would be obliterated!

Wishful thinking? Probably, but still fun to contemplate; or should I say protemplate?

BYOB / Bring Your Own Bone-Marrow

First, the good news: my bone marrow biopsy revealed that only 1% of my remaining bone marrow consists of lymphoblasts (cancer). This means that my cancer is in remission! I've already started the next phase of chemotherapy in an attempt to wipe out the remaining "blasts". On Thursday I had a 24 hour dose of Chemo-Dew (the green stuff). It doesn't give you the caffeine boost (quite the contrary) but does increase your visits to bathroom.

Second, we finally heard back on my cytogenetics test. This is a test that evaluates how the cancer corresponds to my chromosomes. I need to be clear here, this does not have to do with my "family tree" type of genetics (I didn't get my cancer from my parents, nor can I give it to Kezman). This test looks at the mutations in my chromosomes that triggered the cancer. Initially we believed that my cancer was due to extra copies / mutated versions of my 9th chromosome (hyperdiploidy). 

However, the experts at ARUP did extensive analysis - my bone marrow wasn't being very cooperative - and found that my cancer is more complicated than we initially anticipated. My 9th chromosome was not the only one undergoing mutations. It turns out I have a rare variation of ALL called MLL (Mixed Lineage Leukemia). We found that my 11th chromosome, and possibly others are also mutating in a process called chromosomal translocation. This abnormality shows up in less than 10% of people diagnosed with ALL and is most common in infants (less than one year old). What can I say? I like to be exceptional!

In short, I'm a mutant - and yes in a twisted way this has always been a secret dream of mine. It started when I used to play Teenage Mutant Ninja Turtles with with my brother Conrad and Michael Pendleton (he lived down the street). Even though I liked Raphael more (he's cool but rude) - I was always stuck being Michelangelo (he's a party dude) because I was younger, and smaller, and pretty much had to do what I was told. It was okay though because Michelangelo had nun-chucks which are way more entertaining than the little daggers that Raphael had to fight with.

Ninja Turtles Theme Song

For clarification mixed "Lineage" doesn't mean that my parents are cousins or anything like that. The lineage referenced is in regard to this type of cancer. As you may have already surmised, MLL has a less favorable prognosis than my initial diagnosis - in layman's terms, it's a worse kind of cancer. The reality however, is that it is so rare - especially for a 27 year old - that any data we look at is not statistically significant. For this reason my wife has begun to call me a "scientific pioneer". I figure that's better than a couch potato :)

I'm just waiting for my "mutations" to give me some kind of super power. I've already got some numbness in my fingertips (the docs say it's a combo of chemo and guitar) so I was hoping for some wolverine claws or something like that.

Finally, with the MLL diagnosis there is a good chance that I will need a bone marrow transplant to overcome this cancer. Although a transplant may decrease the likelihood of the cancer coming back, it also presents a whole set of other possible complications.

My wife and I are still reviewing our options with the doctors. As always we appreciate all the love and support.

There's No Place Like Home

I've never had ruby slippers or a dog, but now I have two dogs and a couple of adorable nieces living with me (I'm pretty sure they have some ruby slippers) - and all I can say is, "There's no place like home".

As you may have read my in my last post - my neutrophil count reached 0.5 on Wednesday and they were able to release me from the hospital! I was getting so used to it there that it was kind of hard for me to believe I was really getting out. 

I'm pushing a cart of stuff out to the parking lot and AJ stops me to take a picture.  As I'm posing for my "photo op" a family is approaching the hospital and I realize - nobody can see my silly grin under this face-mask! I turn to the unsuspecting patriarch of the group and jovially holler, "Why am I smiling under this thing? It's not like it's going to show up in the picture!" Obviously preoccupied with whatever brought him to the hospital in the first place he chose to ignore my outburst and I received even stranger looks from the children. My mother and wife had a pretty good laugh about it though.

 
It's a good thing that I had been mentally preparing for this in my hospital room. Seriously, when I found out that I would have to wear a mask in public I started envisioning scenarios of being out and about and how people would react. I'm okay with it. And now that I've had a chance to try it out it's actually pretty comical :)

The hardest part of this whole thing is that Kezman is still sick and I have to keep my distance from him (the slightest cold or fever can send me to the ER). Kez is such a happy-go-lucky little guy that he's taking it pretty well. But every once in a while he'll pull himself up by where I'm sitting and give me this look like, "Dad, why won't you pick me up and hug me?" I'm only able to bear it because I can still watch him with his lovely Mother (doesn't she look pretty with her new haircut!)

I have to be honest though... when I first arrived home I wasn't sure I was in the right place. The joint was spotless! The bathroom was painted! My room was painted! I felt like I was on one of those home makeover TV shows! I would like to thank everyone that has reached out to my family over this last month (I feel bad that I don't even know who all of you are). Please know that your kindness has meant so much, it has lightened our burden, and helped us to focus on the adjustment. 

Specifically, I would like to thank my amazing brother Jordan and his family. Within two weeks of hearing about my cancer they moved down from WA state to help us take care of Kezman and offer support during my treatment. My sister-in-law has been so kind and helpful; and my two little nieces and nephew have been such rays of sunshine in our cloudy moments. The difficulty is that my brother (their Dad) is active military and remains stationed in Washington. What a man! Maybe it's because he's served overseas before, but I am still in awe of his sacrifice (it's a long shot but we've requested a transfer to Hill AFB). We are praying for you every night JJ. I've always looked up to you, and not just because you're the tallest brother.

The Luck o' the Irish

I'm not sure why I was such a jokester on Tuesday. It may have been because I was disappointed that my neutrophil count hadn't gone up (neutrophils are the white blood cells that fight bacteria and infection). For weeks I have had none; chemotherapy does that to you. That's the main reason they had me isolated on East 8. 

To give you an idea, a normal healthy person has a neutrophil count of 1.8. On Friday I clocked in at an impressive 0.1. Doctor Forsythe congratulated me on a 100% improvement. On Saturday I hit 0.2, and on Sunday I hit 0.3 - that's when doctor Petersen let me know if I measured 0.5 I could go home. So then Monday I scored 0.4, and I was poised to go home on Tuesday. But, as you may already know my levels held - Tuesday I was still at 0.4. To battle the bewildering blow I just goofed around.

That morning I woke up giggling because I had this silly idea. While AJ was sleeping I slipped on my tennis sneakers and snuck into the hall. I had queued up "Eye of the Tiger" on my iphone and put the volume all the way up. Just before I past the nurses station I hit play... Bada-bada-bada-bada-bada-bada-bada-bada - Dunt... dunt, dunt, dunt... dunt, dunt, dunt... dunt, dunt, dunnnnnn! So as I'm sauntering by I start throwing air punches to the beat; dunt... dunt, dunt, dunt... I kept the music playing as I walked my laps for the morning, and I'm pretty sure everybody that got a glimpse of my antics had a pretty good laugh.

But the shenanigans didn't stop there. The woman that cleans my hospital room is bilingual (Spanish/English). When she came I told her I was going to play a song for her... To be honest, I wasn't sure what I was going to play so I took the easy route - The Blues. I summoned what Spanish I could remember and sang: 

No hable espanol
Pero yo trato
No hable espanol
Pero yo trato
Gracias por limpiar mi cuarto

It must have gone over pretty well because she had a huge grin on her face when she left.

After my customary shower for the day, I decided to wear what I call my "newsies cap". Rather than go with my customary New York accent though, (my work friends know that one well) I decided to try some Irish instead. There were many random reasons for this: 

First, early in my hospital stay my Grampa Reese told me all about my Irish ancestor Stillman Pond (Kezman's middle name is Pond just like my Grampa). Second, my brother Justin sent me a Louis L'amour novel titled "The Iron Marshal" and it just so happens that the main character is an Irish immigrant who finds himself out West. Third, the woman across the hall with AML (it's like my cancer but red blood cells instead of white) also has Irish ancestry. Her sweet daughter (Therese) flew in from CA to look after her and has been here nearly as long as me. Turns out Therese is an amazing bagpipe player (and teacher).

My hat is kinda like this one

So I'm quoting silly stuff from that movie Far and Away with Tom Cruise and Nicole Kidman, "Tell me yuh like me hat Shannon. Why can't yuh tell me yuh like me hat?" The nurses laugh, but I have a hankering suspicion that they are just trying to be nice (it's their job to help people feel better). 

I knew I was running out of material when I started quoting Irish Spring commercials, and Lucky Charms slogans. It occurred to me that I don't know what a real Irish accent sounds like, and it was a good thing that no real Irishman was around to clean my clock for trying to fake it - I've heard about the "fighting Irish".

I must have subconsciously known that it was my last night in East 8 because as the day drew to a close I had the urge to invite anyone who would listen to come to my room for what will now be referred to as my farewell concert.

I'll post some more videos later, but I wanted to share this one as it relates to an earlier blog entry. I dedicated this song to Joleen (Therese's Mom) because she was having a rough week. I wish you could meet this woman though, she is just a ball of fun with a smile so broad that it can hardly balance on her face.

If you read my previous post, you know that when I listened to Enya's version of this song (ironically Enya is also Irish) it really touched me and was my inspiration through the first phase of my treatment. 

Well you know me, I had to write my own version, or should I say, "me own vareshun"...

How Can I Keep From Singing?  

I'm not sure if it was the music, everyone's prayers, or the luck o' the Irish but when they did my blood draw the next morning I hit 0.5.

Four for me, None for You

Friday started off normal (well normal for me and my hospital routine).  Eat breakfast, take pills, call the CNA to change my sheets while I jump in the shower - and that's when things got interesting. To be honest Wednesday and Thursday were a little rough for me last week. I think Monday's chemo treatment finally caught up to me.  My blood levels were low, and by Thursday morning I was due for a transfusion.  They gave me two units and by Friday morning I was feeling much better (ya, I'm kind of like a vampire).

Nicolas Cage may want to consider washing that thing off too!

Not feeling well I hadn't shaved for a few days and I was starting to get some whiskers going. So I'm in the shower and I have the washcloth out and I kid you not - yes gentlemen be jealous - I wipe it across my lip and my mustache just washes right off! It was a very strange and interesting sensation.

Later that day my wife texts me - she, my sister, and my brother's wife were out and about for some "girl time" - and they had gotten their nails done. Orange is the Leukemia color (you know how breast cancer has a pink ribbon, leukemia's is orange). Anyhoo, I get this text and the three of them had their nails done bright orange with 'ALL' (Acute Lymphoblastic Leukemia) on the big toe. With that and the shaved heads, I would say that I've had support from head to toe around here :)

I have one more story from Friday but this one is going to require some background. I'll do my best to keep it brief. 

Unfortunately this Leukemia business is not my first hospital stay. When I was 12 years old I injured my head in a roller-blading accident and spent several weeks at Primary Children's Hospital. The injury lead to a bacterial infection in my brain known as "meningitis"; this can be lethal or cause serious brain damage (I have brother's that still claim I received the latter). I was in a coma for a full week, I had a respirator and tubes coming out of my head to relieve the pressure - it was a pretty serious ordeal.

My Dad actually worked here at the time I was a patient

Miraculously (come talk to me some time if you want the whole story) I survived. During my stay I had several friends from my 6th grade class come to wish me well. One very special visit was from my good friend Brandon Julian, and the scandalous part (for 6th grade anyway) was that he brought a girl with him!

Brianne Baucom. So these two came to visit, and I still remember I was a little embarrassed because I didn't have a shirt on. They had brought me a Twix - but not just any Twix - the King Size, that's four chocolatey crunchy cookies (not just two). Oh wow, I still love these things. 

So this last Friday, I'm hanging out minding my own, when who comes in? Brandon Julian and Brianne Baucom Julian (I'm happy to share that they are married now).

Anyway, I bet you can guess what they brought me - in addition to a fun baby toy for Kezman - a King Size Twix bar. Yep - four for me, none for you!