Tuesday, August 19, 2014

Now is the Time to be HEADstrong!

Last summer while struggling for a cure in Houston my heart was touched by an amazing community who united in love and gave of their time and talents for our family. Simultaneously three warriors had begun a journey across the entire country to raise money for cancer research and awareness. These two forces united in the heart of the city and my life was elevated. Within only two weeks of treatment I had already reached remission. 

I realized that I still had Miles 2 Give.

Although he can run for miles Kezman is never short on hugs and smiles!
Just when I thought my cancer journey was complete, I was shocked to find that I had only reached an apex; my cancer coaster came crashing down another cliff. We recently found that the leukemia has found its way into my brain. Irony... No... This is Destiny!

Now is the time to be HEADstrong! 

Tis' time for cancer to walk the plank!

As strong as I need my head to be in order to overcome this most recent challenge I am unable to ignore my heart. I want to thank my wife for sharing this scripture with our family the other night.

Proverbs 3:5

"Trust in the Lord with all thine heart; and lean not unto thine own understanding." 

As I'm amidst my third year battling cancer,there is much that I have found difficult to understand. What i do know is that I have seen more kindness, goodness, and selflessness; more of the pure love of Christ in my life than I have ever before. I am grateful to the Lord for his tender mercies each day, and thankful to each soul who has touched our family with your love.

Thursday, August 14, 2014

Remember, Remember, Remember

Early last week I had the opportunity to talk to Cheryl Colleluori, the President and CEO of the HEADstrong Foundation. She is also the mother of Nick Colleluori, a cancer warrior who devoted his final days to something bigger than himself. It is because of his desire to serve and his wonderful family that carried out his dying wish to create Headstrong, that we have a place to stay while I'm being treated in Philadelphia.

As I spoke with her last week I shared my gratitude, and let her know that I had been thinking about the sacrifice their family has made. I explained that it must be challenging to be reminded of her son's death every day. That I had lost a brother to suicide, and that even though the circumstances are not comparable, the heart ache from the loss of a loved one never really goes away.

I admitted that I almost felt guilty that I have days in which I become so distracted with my day to day activities that I don't really think about it. The thing is, the Colleluori family doesn't have that "luxury", they are surrounded by their son's legacy every day, and I'm sure that there are times when it is difficult. I told Cheryl that I admire her for that.

As I reflected back upon our conversation later in the week, I was reminded of another parent who lost a dearly beloved child. 

"For God so loved the world that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." St John 3:16

'Carry your World' by Landon Cooper
It reminded me that I lost another brother, even Jesus Christ. He died on the cross and overcame death by the power of the resurrection that we too may share in this wonderful gift. It reminded me that when I was baptized I made a covenant to always remember Him and keep His commandments. 

Accordingly, in a poignant parallel,as the Colleluori's remember their son and brother every day, even when it's hard, even when it hurts - they remember and turn it into something beautiful and benevolent; I to will strive to remember every day, my brother, my Savior, my God, and turn sin into sanctification, suffering into serenity, and great worry into good works.

Monday, August 11, 2014

How to Speak Like a Philadelphian

After spending over a month in the city of brotherly love I have started to pick up some of the local accent. I thought I would share this tutorial with anyone who is interested in speaking the local language.

Replace the hard "A" vowel sound as in Ant with "ee-A"

Ya = Yee-A
Cat = Kyat
Pants = Pyants

Precede the soft "A" sound as in Awesome or Drop with a short "oo" sound. The "oo" and "ah" should only take up one syllable. Shape your mouth like your going to say "oo" and then open up to the "ah" sound.

Water = Woo-ah-der
Bought = Boo-aht
Audio = "oo-Ah-dio

The vowel sound in words that end in "or" such as Floor should also be pronounced this way but only open up half way to more of an "uh" sound.

Door = Doo-uh
Fort = Foo-uht
Board = Boo-uhd

Finally, talk (t'oo'ahk) about your local sports (sp'oo'uhts) team with resentment, and then cheer for them like you can't (kyant) remember how many times they've let you down.


Sunday, August 10, 2014

Double Your Fun...

The headache started Tuesday night and greeted me promptly in the morning. After they prescribed some maximum strength headache meds my oncology team and I tried to figure out why these hives are lingering. Following a great deal of speculation they scheduled me to meet with the dermatologist. He put my mind at ease when he explained that it is not uncommon for hives to persist for several weeks. The downside to that however is that they don't want to give me my CART-19 cells while I have hives. Long story short - more delays.

They drew a lot of labs on Wednesday!
To complicate matters I began to have bouts of double vision that afternoon. They increased in duration throughout the week and by Friday I felt like I was living in a double mint gum commercial. We met with an Ophthalmologists at the Eye Emergency Department on Saturday. After extensive examinations, hours in waiting rooms, and an MRI, surprise surprise... they had no idea what was causing my ailment. Apparently causes of double vision are almost as difficult to decipher as causes of hives!

Things grew even more exciting at about 3:00 AM when I woke up with a headache like I'd been smacked in the back of the head with a two by four. Then I looked in the mirror I realized that I couldn't move the right side of my face. The fun part was that I got my first ride in an ambulance, although I must say it's probably more exciting in the drivers seat where you can see all the traffic move aside as you cruise through red lights.

There's a first for everything...

Well that's pretty much the update. I have more testing scheduled for tomorrow, Currently we're just hanging out on the 6th floor at the University of Pennsylvania hospital. I'm squinting at my laptop with one eye closed (otherwise it appears like I have two laptops). Which reminds me of a couple good things about double vision: one, you have twice as many friends come visit you in the hospital, and two, when you open up your wallet you have double the cash!

Valley Forge Fun

Friday, August 1, 2014

Thank You For Loving Me Enough to Cut Me Down

Earlier this week I had the privilege of going to dinner with my friend Aymon. We met in the hospital on my first trip to Philadelphia back in June. I was waiting to have my t-cells extracted for the CART-19 study, and he was awaiting an infusion to help treat his multiple sclerosis. Initially we were all staring at our "smart" phones, then somebody made a joke about it and we began interacting like people used to before the invasion of "social" technology - and I'm glad we did because it gave me the opportunity to meet a truly awesome individual.

We found out that our diseases are nearly opposite - his immune system has gone out of control and attacked his nervous system; my bone marrow has gone out of control and my immune system doesn't do anything about it. We swapped hospital horror stories, and found that despite the differences between our ailments we had undergone several of the same chemo therapies.

Aymon has been dealt what some would consider a tough hand, but he manages to keep a smile on his face. He was a long distance runner in high school, but at age 24 he was diagnosed with an aggressive form of MS. He is now confined to a wheelchair, has gone blind in his right eye, and is beginning to lose control over his arms and hands. Notwithstanding all this, he related the following to me, "If I had the choice to be healed today, or to go back to when I was 24 and never fall ill with MS I wouldn't go back. I've had too many amazing experiences. I've learned so much. I wouldn't trade it."

I was inspired by his words. I told him I have never considered my cancer diagnosis in that way and that I would need some time to ponder it. As I've contemplated this interesting proposition throughout the week two things came to mind:

First, was the Lord's council to Joseph Smith as he endured the horrendous circumstances of Liberty Jail,"If thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; If fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good." (D&C 122:7)

I don't know about you but in my mind that scripture conjures up visions of some of the darker scenes in The Lord of the Rings! That said, I've never had the elements combine against me, or the jaws of hell gape open after me, but if those terrifying scenarios can be for one's good, then I suppose I too can gain experience and learn something from my trials.

Second, is a story related by Hugh B. Brown that has come to be known as, 'The Currant Bush'. These are his words,

"I was living up in Canada. I had purchased a farm. It was run-down. I went out one morning and saw a currant bush. It had grown up over six feet high. It was going all to wood. There were no blossoms and no currants. I was raised on a fruit farm in Salt Lake before we went to Canada, and I knew what ought to happen to that currant bush. So I got some pruning shears and clipped it back until there was nothing left but stumps. It was just coming daylight, and I thought I saw on top of each of these little stumps what appeared to be a tear, and I thought the currant bush was crying. I was kind of simpleminded (and I haven’t entirely gotten over it), and I looked at it and smiled and said, “What are you crying about?” You know, I thought I heard that currant bush say this:

“How could you do this to me? I was making such wonderful growth. I was almost as big as the shade tree and the fruit tree that are inside the fence, and now you have cut me down. Every plant in the garden will look down on me because I didn’t make what I should have made. How could you do this to me? I thought you were the gardener here.”

That’s what I thought I heard the currant bush say, and I thought it so much that I answered. I said, “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and someday, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down. Thank you, Mr. Gardener.’”

We often think we know the Lord's plan for us only to be disappointed when things don't turn out how we expected. We may be tempted to complain, "How could you do this to me? I was making such wonderful growth." It can be difficult, or even painful, but sometimes the Lord has to remind us that He is the gardener, He knows what we are to be, and if we could only see from His eternal perspective we too would say, "Thank you [Lord], for loving me enough to cut me down."

Wednesday, July 30, 2014

My Golden Birthday

According to one's 'Golden Birthday' is, "the birthday when you turn the same age as your birth date. My wife tells a fantastic story of how on her 23rd birthday (her golden birthday) she visited a church in Brazil that was completely made of gold. Well, it just so happens that my golden birthday is coming up - I turn 30 on August 30th. While many individuals dread their 30th revolution around the sun, I will be more than thrilled if I can live to the ripe young age of thirty! Allow me to explain...

We met with Dr. Porter on Tuesday morning. The bone marrow biopsy from last week revealed the 5 weeks of chemo I endured before leaving Utah brought my cancer to a mere 6%! My blood counts are great, my weight is up, and my lungs sound good - no more bronchitis. I'm still tapering off of prednisone due to my bought of hives/emergency room visit last week. Dr. Porter recommended we wait for one week to ensure they don't return after I'm off steroids. This means I am scheduled to start chemo the second week of August, and I will receive my t-cell treatment the following week.

This puts me right amidst a cytokine storm as I approach my 30th birthday. What's a cytokine storm? Wikipedia explains it this way, "A cytokine storm, also known as hypercytokinemia, is a potentially fatal immune reaction consisting of a positive feedback loop between cytokines and immune cells." This immune reaction is not necessarily a bad thing, it basically means that my new "mighty mutant ninja t-cells" are going "incredible hulk" on the "criminal leukemia" in my body. If they are victorious in this epic battle of cellular superheros - I get to celebrate my golden birthday!

Friday, July 18, 2014

Bronchitis, Biopsies, and Broadway

Greetings from Philly! On Monday I went in for CT scan because my cough had not let up. At our return visit on Tuesday the doctor explained that it appeared I had a viral infection that had developed into bronchitis. He prescribed an inhaler for when I have coughing fits. He then surprised me and said he wanted to do a bone marrow biopsy right then and there!

Kezman running down our street in Philly.
I wasn't planning on a biopsy but I have been very curious to know how/if the cancer has progressed since I am into my third week without any chemo treatments. I can honestly say I was excited for it - really? excited to have them drill into your hip, extract the marrow and then wrestle out a core of the bone - yes it sounds crazy but maybe I've just grown accustomed to the practice. Amanda and I estimate I've had nearly 20 bone marrow biopsies in the last 3 years and I have the scars on my back to prove it.

This was also a good sign because on Friday last week Doctor Porter said he didn't want to do a biopsy because they still weren't sure when the study would continue. At this appointment he explained that he worked out most of the kinks with the FDA on Monday and there is a very good chance the study will resume next week. If I can kick this bronchitis I may start chemo as early as next Wednesday. It's good to know that they are finally making some headway.

Getting ready for the show to start :)
With the possibility that this may be my last week before I start another debilitating round of chemotherapy and a life threatening treatment AJ and I decided to throw caution to the wind and took the train to New York City to see a play on Broadway. With wifi and cushy seats an 80 minute train ride goes pretty fast. Before we knew it we were standing in line to see the Newsies. Secret revealed; I've been waiting for a stage version of Newsies to show up somewhere since I was in high school. When I caught news that it came out on Broadway two years ago I was extremely excited but feared I may never get to see it. Well, you can mark that one off my list!

I ran into a couple old friends in NYC.
As if that wasn't enough my amazing and talented friend Jessie Davis took the train from Brooklyn and met us for dinner at the London. Her sister works there so the Gordon Ramsay menu prices didn't hit our pocketbook like they would have otherwise. Thanks for the discount Maggy your a sweetheart! We took a walk to central park and Jessie packed her ukelele along.

Trying to play ukelele with numb fingers...
Imagine this; a game of softball winds down across the walking path as you're seated on a park bench listening to a soulful private musical performance, your dream girl by your side, a back drop of the sun sets in shades of orange, purple, and pink behind the silhouette of the city as fire flies begin to sparkle in the grass at your feet.

That was my reality on Wednesday night and for a brief moment I forgot about hospitals and hand sanitizer, tests and treatments, pokes and pills, biopsies and bills, what saves and what kills and the fine line between them in the nightmare that calls itself cancer.