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

Saturday, March 23, 2013

Isolation with a View

I'm sure I'm overdue for a blog entry so let me first make some excuses... I've been spending time with my family, I've been updating my website (check it out), oh ya and I've kinda been working through some chemo therapy treatments - no big deal ;)

They moved me back into isolation because I contracted Rhinovirus. This is the third time I've picked it up in the last 6 months - darn my weak-sauce immune system! Don't worry though it's not as bad as it sounds. "Rhino" is Greek for "nose" and the Rhinovirus is actually what we refer to as the common cold. The only problem is that my chemotherapy has wiped out my defenses so I don't have any neutrophils (white blood cells) to fight it. So I'm pretty much stuck with a cold that I can't get rid of. Let's just say I've gone through a lot of tissues :)

Ironically I was put in the same isolation room I had back in January when I was treated for RSV. The familiarity has been comfortable for me. The view is much better than my last room. I can see the mountains in the East and across the valley to the Sugar House neighborhood I grew up in.

I finished my last dose of chemo (for this round anyway) on March 20th. It caused a little neuropathy which wasn't very fun. Neuropathy is nerve damage - in this case my fingers were numb and my hand would cramp up in weird shapes and I'd have to massage it out to move it again. This happened a little bit with Vincristine (the chemo drug) last year, so I wasn't too freaked out, but it does make playing my guitar a little more challenging when I can't feel my fingertips. Interestingly, Vincristine is derived from this lovely flower.

Some good news: for the last two weeks there has been no trace of cancer cells in my blood! The plan now is to give my blood and bone marrow time to recover and then do a bone marrow biopsy. The biopsy will tell us whether or not we were successful in eliminating the cancer from my bones. If we are successful the next step will be to prepare for a second bone marrow transplant. Finding a donor will take approximately 3 to 5 weeks, during which time I will undergo a "maintenance" protocol - basically several more weeks of chemo to ensure the cancer stays in remission leading to the transplant.

There are a number of "but what ifs" hanging in the balance right now, but we are hoping for the best and praying a second bone marrow transplant will do the trick.

I've been doing my best to stay in shape, although I must admit I weigh less at present than I ever have in my adult life. On my good days I walk a mile and I'm eating plenty. The reality is that the chemo depletes my bone and muscle tissue.

I've been drinking protein shakes and I recently got a stationary bike in my room that I've been riding while I watch March Madness - so hopefully that helps. In the hall they have a cork board race track to help you chart your daily walks. My wife brought me some colored pencils and I made a little guitar and beanie for my figurine :)

Ironically, I received a letter from the University of Utah informing me that I had been awarded the scholarship I applied for (full tuition for 2 semesters)! I don't know that I'll be able to accept it but the social workers here at the hospital are contacting the University to see if we can postpone it until my treatments are complete. My mother in law says it's a sign that I still have more to accomplish and that I'm destined to beat this cancer again - thanks Margaret :)

And thank you to everyone else who has been so generous and kind. It may sound strange, but I view everyday from a balcony of gratitude. I've never been in a position to observe so much goodness and charity. It is truly a blessing to see so many who care and serve. I am humbled daily by your examples.

Thursday, March 14, 2013

But If Not...

If you have seen any of my video posts on facebook lately you may have noticed that my facial hair is getting pretty scraggily. Allow me to explain: chemotherapy makes my skin extremely sensitive - rash and razor burn are inevitable. I decided since my hair will fall out in the next week or two anyway, what's the point of dealing with that!

I appreciate and I am grateful for all the kindness and generosity that is being shown to me and my family at this time. I feel very blessed. Thank you to those who shared the words of the apostle David Bednar on March 3rd. As I had just been readmitted to the hospital for treatment they were very personal and touching.

He gave an account of Neil A. Maxwell's experience with cancer and how he said it is better "not to shrink, than survive" and "don't become bitter from drinking the bitter cup." Profound statements from a spiritual giant. 

Regarding a different and much younger couple's struggles with cancer, Elder Bednar felt impressed to ask them the following two questions:

"Do you have the faith not to be healed? Or is your faith dependent on outcomes?"

I have pondered these teachings and questions frequently over the last couple weeks. If the Lord swooped in every time and saved us from disappointment, heartache, suffering, and sorrow our progress would be stifled - we could not learn true faith in the Savior. 

I've come to the realization that faith is not about what we want and desire, it is about accepting what the Lord wants and that becoming our desire. 

The ancient King Benjamin taught we must be, "submissive, meek, humble, patient, full of love [and] willing to submit to all things which the Lord seeth fit to inflict upon [us]."

Paul tells us in 2nd Corinthians Chapter 12, "I will glory in my infirmities...for my strength is made perfect in weakness...for when I am weak, then am I strong." 

This scripture definitely runs parallel with my chemotherapy treatment. Not necessarily that I'm glorying in my infirmities (I'm still working on that part) but that I physically have to be brought to a point of intense weakness in order to be made strong again. 

This happens to everyone at many times and many levels throughout our lives. Great accomplishments are almost never the product of a single triumph, but of many acts of steady, perseverance. 

Most everyone can recognize the American icon and home run slugger Babe Ruth. He held the all time home run record for 52 years with 714. That is what most of us remember about "The Sultan of Swat." 

What we don't often talk about is that he had 1,330 strike outs! That means that he would strike out nearly twice as many times as he'd hit a homer! About this he was quoted as saying, "Every strike brings me closer to my next home run." 

We often have to endure a great deal of failure, weakness and disappointment in order to become strong and achieve great things. So my cancer came back - that just brings me closer to my next homerun, and I've got a pretty awesome team supporting me :)

My mother's cousin once shared a song with our family that a church leader had written for the youth in his congregation. It was a simple song about this principle of perseverance. If you'd like to listen I put it to music the best I could remember and recorded it in my hospital room this morning.

You're not judged by the number of times you fail
But by the number of times that you succeed
And the number of times that you succeed is in direct proportion
To the number of times you fail, so keep trying

Keep trying, keep trying, keep trying, keep trying
You will succeed if you keep trying
Keep trying, keep trying, keep trying, keep trying
You will succeed if you keep trying

In conclusion I would like to tell you about this hand crafted little friend that I received from my sister-in-law Melanie. His name is Meshach because he is accompanying me in my "fiery furnace." Allow me to explain...

In the 3rd chapter of Daniel we learn about three Jewish leaders (Shadrach, Meshach, and Abed-Nego) who refused to worship a golden image as decreed by the King of Babylon. 
They were brought before the king by penalty of death in a fiery furnace if they would not forsake their God and worship his idol. This is how they responded (Dan 3:17-18):

"If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up."

"But if not", three powerful words that separate true faith in God from faith dependent on outcomes. If God had plans for these men in the spirit realm they would have been consumed by the furnace and died - they understood that and were willing to accept the Lord's will. 

The key to trials is how we respond. I know that the Lord is to able to heal me from this awful cancer - but if not, be it known unto anyone who reads this blog that I will not lose my faith in the Lord Jesus Christ. I am grateful and indebted to him for every breath. I know that because of Him I have been, and can continue to be made clean and inherit eternal blessings with my family - a better comfort I could not have at this time of uncertainty.

Thursday, March 7, 2013

Back in the Saddle Again

Two weeks ago I began suffering from severe back pain (particularly at night). It reached the point that I could not sleep without heavy medication and a heating pad. I finally made a visit to L.D.S. Hospital on Monday night (2/25/2013) and they gave me some stronger pain meds, and ran a blood test. On Tuesday my doctor called with the sobering news that my leukemia has returned and was causing the discomfort in my spine. She requested that I report back to the hospital first thing on Wednesday morning. 

I had a wonderful dinner with my family at my parent's house on Tuesday night. It was comforting to have all my family (that lives close enough) to be there as I prepared to once again face the cancer that nearly took my life last year. This in addition to the outpouring of online support, visits, phone calls, special musical numbers, and texts, has been a great strength for me.

Julie, Melanie, and Amanda
For those of you interested in what I've been up to, my time on East 8 began as follows:

Day 1: February 27th (Why are there two r's in February, can't we just change it to Febuary and move on?) - who's with me?

I checked into the BMT clinic at 8:15 am. After some lab-work they moved me to my current room and asked that I refrain from food and drink as I would be undergoing a minor surgery in the afternoon.

I was connected to a pain pump for my back pain which was successful but only in temporary bouts. My initial blood-work indicated that my white blood cells consisted of 81% blasts (leukemia). Early in the afternoon I was rolled down to "Angio" and treated with a spinal tap while I laid on my stomach (this consisted of withdrawing some spinal fluid for testing and then inserting some chemotherapy to fight the cancer).

Right after that they rolled me over on my back so that they could surgically insert a new central line (the "triple nipple") back into my heart for easy blood and medication transfusions. As you can imagine I was pretty groggy for the rest of the night. If I remember correctly they still ran an echocardiograph (basically an utra-sound of my heart) and a chest x-ray. 

After all the exciting preliminary tests we got a good start on my chemotherapy regiman. I am taking Dexamethozone twice a day (it's a kind of a steroid), I also underwent an infusion of Vincristine, and what I like to call the "Smurf Sauce" because it is bright blue - and it's more fun to say smurf sauce than Mitoxantrone.

Rather than continue with the day to day - believe me it just keeps going - more chemo, more pain meds, more smurf pee, you name it. I will give you a quick run down on the general plan for my treatment.

Dr. Asch wrote up a custom chemotherapy schedule for me. It is based on other treatments that are being tested in a couple cancer centers across America. It is basically the same but we couldn't include some of the experimental drugs that are only part of those particular trials.

The goal is to get the cancer back into remission as soon as possible. We are already looking for another bone marrow donor. If I can reach remission again, the goal is to try a second transplant. I must be honest and tell you it is difficult to achieve remission a second time (particularly if you relapse within a year) but we are hopeful. 

I conclude with an anecdote my father shared with me about my nephew this last week. My Sister-in-Law Julie (pictured above) had taken her two little angels roller skating and my father had the following conversation with Alex about it.

Alex: "Grampa, I went roller skating today."

Grampa: "How was it? Did you fall down?"

Alex: "Yes, but I know how to get back up."

And that's just it. I may have fallen down again, but I want all of you to know that I will not shrink from this challenge - I know how to get back up.