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 www.marshalljmusic.com (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.

Saturday, February 2, 2013

Teaching Like the Savior using SALT

Marshall and I sang for a scripture night last week along with Elizabeth Weiler and Sister Groberg drew us this cute picture. Thank you Sister Groberg- your sweet note and picture made my week! We love you too Grobergs!

There have been a few people who have asked for a copy of a talk I gave a few weeks ago. Enjoy and change some ways you teach after you read this!

Jan 13, 2012

Teaching like the Savior

SALT- Spirit, Act, Love, Teach

Intro: {family stuff- end with If we look tired it’s because it’s been physically and emotionally grueling this last year but I'm, so I’m glad to be here where we focus on what’s most important- the spiritual stuff.} 
     I’m sure you are all familiar with the concept of giving a man a fish and feeding him for a day or TEACHING a man to fish and feeding him for a lifetime. As mothers, fathers, bishops, priests, sons and daughter, we are all teachers or future teachers in every moment and “no greater responsibility can rest upon any man or woman than to be a teacher of God’s children.”  Young people will become teachers at a younger age now so it is important that youth as well as parents teach like the Savior.  President Bednar says that as teachers, we are not distributors of fish. (We can’t pour all our spiritual knowledge into the next person.) I have an original painting in my library that I bought from a young man in Brazil who was saving to go on a mission. It is the back of a fisherman. I want to point out that in the picture he is working hard at gathering his fish. Do we hang back on the sidelines of fishing/teaching?
My mother in law is one amazing cook! I love it when she invites us to dinner, but dinner is almost always already made when we get there.  One Super Bowl Sunday I asked if we could make it a SOUPER BOWL Sunday and if she would teach me to make a few of her delicious soups. For Christmas, she gave me this amazing book (show Family Recipes book). Today, I would like to invite you all to not just sit and eat. Uchtdorf says if you’re a spectator on the sideline of a ball game you are not reaping the health benefits of playing. I extend an invitation to all who teach or will teach (everyone here even if it’s just a little brother or sister watching you) to write down and ponder some of the ways to add yummy spices to your recipe of teaching more like the Savior would and apply and evaluate your lesson today. Today I would like to share with you the ingredient SALT. Remember the acronym: S, A, L, T.

S: SPIRIT- Teach with the Spirit…
                “It is only with the heart one can see rightly”- Linda K. Burton.  It’s not important what we see with our eyes and navigating millions of web pages isn’t good enough!  The things of most importance are invisible to the eye.  What the world offers is not good enough and we all need to be healed by the word of God. An unrushed atmosphere is essential. “Too many of us rush. We rush right past the Spirit of the Lord trying to beat the clock in some unnecessary footrace”.
Never postpone a prompting to be an instrument in the Lord’s hands!! When determining what to teach adapt the lesson to the individual needs of people and teach what is needed right then! Right now is the teaching moment!  Heavenly Father will guide as we review lessons, ponder, and pray to be aware of other’s needs. If someone has had a challenge that week, change the dynamic of the lesson. 1 Sam 12:23 Moreover as for me, God forbid that I should sin against the Lord in ceasing to pray for you: but I teach you the good and right way. Talk to parents, teachers, and ask the learner themselves what they need. Concentrate totally on the Needs of the Sheep. Do not teach lessons, teach people. We’ll have experiences during the week that will prepare us if we have QUIET TIMES- a little quiet and still time every day, not just 30 minutes before we teach a lesson.  There is not enough time to cover the entire outline when thinking of the students.  Teach what they need and teach it simply. Take just a few good ideas and get a good discussion.  1 Cor 14:19 Yet in the church I had rather speak five words with my understanding that by my voice I might teach others than ten thousand words in an unknown tongue. Hebrews 4:12 For the word of God is quick and powerful and sharper than any two-edged sword, piercing even to the dividing asunder of soul and spirit and of the joints and marrow, and is the discerner of the thoughts and intents of the heart. When we are teaching we really are preparing all within our voice to fight every day for righteousness. We are equipping them with the gospel- something that is more powerful for good change than the sharpest sword.  The preaching of the word, the power of the word has more effect on the mind than the sword.
     Remember as a teacher to be an instrument in the Lord’s hands.  We need to ask ourselves how can I listen better to the people I am teaching and the Spirit? Simplicity inspires heartfelt questions (learners, ask these). [Ex: Nicodemus invited the student to talk, listened and responded.]  Comments will not only direct this week’s lesson, but the next week’s lesson as well.  Matthew 10:19-20 Take no thought how or what ye shall speak; for it shall be given you in that same hour what ye shall speak. For it is not ye that speak, but the Spirit of your Father which speaketh in you.  Elder Scott said a teacher should humbly recognize that the Holy Ghost is the true teacher.  A teacher is the instrument to teach, testify, comfort and inspire.  2 Nephi 33:1 for when a man speaketh by the power of the Holy Ghost the power of the Holy Ghost carrieth it to the hearts of the children of men. Elder Bednar said that the content of the message and Holy Ghost penetrate only if the receiver allows them.  Our job as teacher is to open the pathway into the heart.   D&C 84:85 …treasure up in your minds continually the words of life and it shall be given you in that very hour that portion that shall be meted to every man.  You can’t know exactly word for word what you will teach, but you do need to study, ponder, pray, and use the scriptures. You can describe quickly the history and context behind each scripture so you are nourishing not just feeding. Don’t be overwhelmed because you don’t feel you know enough about the scriptures. We all feel that way. Primary teachers be relatable and try to have scriptures come alive1 Cor 2:13 Which things also we speak not in the words which man’s wisdom teacheth, but which the Holy Ghost teacheth; comparing spiritual things with spiritual.  Remember our perspective is extremely limited to the Lord’s perspective, but we have a wealth of the word of God available to us and we ought to use it. [Ex: Dad and the question I asked him].  The scriptures don’t need to be diluted, but do need to be applied and likened with statements like, “This is what I will do”. Read and discuss them in class for they provide strength, authority and a foundation of truth.  Living prophets should have special attention in a lesson for they are vital for success [Class taken at BYU-I taught they should be right next to the ancient scriptures].  Our call from Christ as a teacher is just as those in ancient times, “Come Follow Me”. Prepare spiritually through DAILY prayers, scriptures, and living the gospel.
     Teach by testifying.  “Testimony is found in the bearing of it”. [Ex: When Christ asked Martha , “Believest thou this?” It was when she said aloud, “Yay Lord, I believeth thou is the Christ” that she had a testimony.] When we testify, we and our friends strengthen our desire to follow the Savior in a troubled world.  There were so many scriptures I read about bringing peace to your children in a troubled world.
     Music is another magnificent teacher and way to bring the Spirit to the room.  Colossians 3:16 Let the word of Christ dwell in you richly in all wisdom; teaching and admonishing one another in psalms and hymns and spiritual songs, singing with grace in your hearts to the Lord.”

A: ACT- Invite those we teach to act…
As a teacher we are the facilitator, the encourager, the guide. Invitations to action can be sent by discussing challenges and following up from the last invitation with statements like, “I acted this way and that’s how I changed my life”.
     We are not the only teacher in the room- allow others to teach.  Help the learner assume responsibility for learning. Let other members share, help, and gain confidence. Give them responsibilities as Christ did with his apostles.  He repeated three times the question, “Lovest thou me? (And answer) Feed my sheep.” [Ex: The Savior invited an enquirer to act on the next step when he asked what he could do: “One thing thou lackest. Sell what thou hast and give to the poor. Thou shalt have treasure in heaven.” Surely if the Savior asked that we can give an assignment to study for the next week or a challenge to notice the Hand of God in our lives, or even a reminder text. We need to follow up and invite others to share.  Even if we feel inadequate, we should aim high in our teaching.
     Teach them to learn for themselves.  We need to awaken a desire to learn, study, understand, live the gospel and to use our own efforts to gain knowledge and truth. Marshall will talk more of how to become a diligent gospel learner.  Diligent gospel learning is fundamental to teaching process.  Invite diligent learning.  David A Bednar asked if we are preparing our kids for the challenges of mortality. As parents are we preparing our kids to seek learning by study and faith or to wait and be acted upon?  “Are we primarily giving them the equivalent of spiritual fish to eat or are we consistently helping them to act, anxiously engaged in asking, seeking, and knocking?” What is in the minds needs to be felt and owned in our children’s hearts, not just relying on parents. This is the meat of the gospel that you are ready for after the milk.
     Teach unity and have the patience to know it is a step by step, line by line process.  Day by day as we choose to act, hearts will change, and we will see and feel unity.  Unity empowers more change. Remember as we testify it strengthens not only us but those around us.  King Benjamin, Alma, and Jesus all rejoiced because a group of people they were teaching no longer had the desire to do evil. Proverbs 11:12 He that is void of wisdom despiseth his neighbor; but a man of understanding holdeth his peace. 2Nep 22:13 and great shall be the peace of the children.  We all have weaknesses and we should challenge ourselves and each other to make changes to be in harmony with the Lord’s teachings. Every once in a while I check where I am at by using preach my gospel, “Develop similar attributes of Christ” at the end of the purple section and we can use these great questions to work on our weaknesses as well. Conclude lessons in a way that invites the learners to live what they have learned. We can review main principles and ask learners to apply or review main points.  Remember to do what Elder Bednar said and exhort spiritual, mental, and physical excursion not just passive absorption.

L: Love- Teach through love: Teach each and every heart and life…
     The key to teaching like the Savior is charity. We have the power to teach hearts. “If children are unresponsive we can’t teach them yet, but we can love them. If you love them today, maybe you can teach them tomorrow”. Maybe there is a disruptive person in class. Picture them all in white.  Instructors- fill your pockets beforehand with study and prayer! The Lord knew and loved his disciples personally. His love gave them power.  Ask, “How can I help people resolve their problems? How can I help people overcome their bad habits and vices?” [Maybe example of dad’s words or Uncle Bill here]. Mark 6:34 And Jesus when he came out, saw much people and was moved with compassion toward them because they were as sheep not having a shepherd and he began to teach them many things.” Love One Another as he loves us. Ann Madsen loved those she taught and started telling them one by one as they left her classroom each week. At first it was awkward. Over time things changed, the spirit became stronger, they grew to love her, and years later her students still remembered knowing each week that someone loved them.
Christ didn’t just speak or teach about love. He SHOWED it. He didn’t remove himself from the crowd. His hands lifted up and healed.  If we are His hands shouldn’t we do the same? [There is a song by Casting Crowns (a Christian rock band) called If We are the Body referring to us being the body of Christ. Some lyrics, If We are the Body, Why aren’t his arms reaching, why aren’t his hands healing, why aren’t his words teaching? Why is his love not showing them there is a way?
What good is teaching without love?-Uchtdorf. As you show love to each person they become more open to learning from you and aware of their eternal worth. Seek to understand them and reach out to each person individually. Worry a little more about the location of your student, what is going on in their heart and soul.  Search ways to help new members and less active feel welcome. Invite, introduce, and ask questions they will know the answer to in class.

T: Teach- Teach by Asking Questions…
     Asking and answering is at the heart of all learning and teaching. The Master asked, answered and sometimes chose not to answer. “Whom Say Men that I Am?” “Whom Say Ye that I Am?” Some questions invite inspiration and great teachers ask those. Try to ask questions that will come alive. Sometimes just the right inflexion or talking about feelings instead of lists makes the difference. Besides asking inspired questions, help find the answers. Examples of some inspiring questions are: Where did we come from? Why are we here? Where do we go when we die? Many revelations in the Doctrine and Covenants came about from asking a question.
Include these 3 questions in your lesson (in some form): Where have we been? Where are we going? What does the Lord want us to do? If I was to ask you these questions as pertaining to this talk today you might answer:  Nothing is ever as it was before and the teaching curriculum to prepare younger missionaries gives us more meat than milk. I will implement the ideas to teach people, not lessons and to concentrate on needs throughout the week when I am asked to teach. You may be tempted to turn back to teaching how you always have before I shared my SALT flavor with you, but remember what happened to Lot’s wife when she turned back (she turned into saltJ- don’t say this).
    We need not only talk, but we need to listen. Listen for new ideas that might not have anything to do with the lesson. Listen with your heart and soul. Jesus did not just lecture. Look outside the box. Mark 4:2 And he taught them many things by parables… not by a monotonous pattern of presenting the same kind of lesson week after week. When you teach with variety, learners tend to understand gospel principles and retain more. Some examples include presenting an object lesson, writing a question on the board, having someone read an article or story, etc. The manual, “Teaching, No Greater Call” has 37 different methods to teach. [Ex: Jelly beans in International Health class. Marbles when I taught a class in college. That way everyone participates then let talkers go]. [Ex: In 2008 President Monson shared the story of a young man who told his instructor there was no way he could learn Spanish for his mission and he was giving up and going home. When the instructor called for advice, they said, “Send him to a Japanese class”. After one time in the class, the young man came to his instructor and said, “I am sure I can learn Spanish”.] Christ will not fail. He knows how to succor his children. Respond to those you teach with questions sometimes. Remember to ask to restate principles taught in own words or ask questions that require them to express they understand.
     Prepare questions and what you teach beforehand. “Seek wisdom from the best books, seek learning, study, and also by faith.” [I need to ask HF to help me to teach so Kez doesn’t have too much TV time]. Evaluate your teaching! [NGOs can have good and bad effect- imperative that we evaluate now]. Ask yourself the questions, “When did they seem most willing to participate? When did they understand how the principle applied to their lives?” “Ask and Ye Shall Receive” is repeated the most in the scriptures so it has great significance to the Lord. David O McKay said, “We become so caught up in the busyness of our lives. Were we to step back, however and take a good look at what we’re doing we may find that we have immersed ourselves in the “thick of thin things”. In other words, too often we spend most of our time taking care of the things that do not really matter at all in the grand scheme of things, neglecting the more important causes”.
     Taking the time to be a more Christ-like teacher is one of the more important causes and Jesus gives us SALT: 1. Teach with the Spirit. 2. Invite those we teach to ACT. 3. Teach through love. 4. Teach by asking questions. [I testify that as we set aside things that don’t really matter we will have time to add SALT to your recipe of teaching. Teaching is eternal and will help you feel wonderful. I hope our teaching ingredients can be passed on from my children to their children so the recipe just keeps getting better and better through time. My cooking and teaching are definitely not all I want it to be, but I can keep working at both.“After all that has been said and done teaching the gospel is the most important” and the best tool to teach it is YOU. You are the Salt of the earth.]

Friday, January 25, 2013

So Fresh and So Clean Clean


On Wednesday we found out that Kezman and AJ have Respiratory Syncytial Virus (RSV). Even though she has felt miserable, Amanda has done a great job taking care of Kezman while I try to avoid the germs. I haven't felt sick but they tested me at my clinical appointment and sure enough I have it too.




What is RSV? For adults with normal immune systems not much more than a cold. For young infants it can be more serious, and for bone marrow transplant patients it can be fatal. That's why the hospital said they wanted me to come in right away when they called with my results.

My treatment lasts for 5 days. I inhale the drug Ribavirin in 2 hour intervals at 6:00 AM, 2:00PM, and 10:00 PM. Before I inhale the Ribavirin I get to "puff the peace pipe" it's an apparatus called a nebulizer that I use to take Albuterol. This drug opens up my bronchioles so I don't have any coughing spasms from the Ribavirin.

The Peace Pipe
Ribavirin works at an intercellular level. It disturbes the DNA of the virus and prevents it from multiplying. They aren't entirely sure how it works, they just know that it does. It has some dangerous side effects (kind of like chemo) so the nurses have to dress up like there has been a hazardous chemical spill when they administer it. 

All Hooked Up
It also clings to my skin and clothes so I have to go into a separate isolation room for the treatment. After 2 hours of breathing the funky stuff I have to take a shower and change into fresh clothes. Then I can go back to my room.

This bad boy vaporizes the Ribavirin.
That's three showers a day! The good news is that if all goes well I will be home by Wednesday. And I will be super clean! Always a new adventure on East 8 :)

Friday, January 11, 2013

1-11 AJ Day O' Wishes Come True

Every January 11th I celebrate my very own unofficial holiday of AJ Day O' Wishes Come True (if anyone knows how much it cost/what to do exactly to make it official, please let me know:). Last year I didn't write about it (I did the year before) due to Marshall taking over the blog for a while. He had posted about his first crazy experience with chemotherapy. That was a wish come true in a way because it was a step toward his remission---and hopefully cure!

Marshall has been doing well. He still has tons of pills he takes every morning and night. Most of them are vitamins.  His weekly visits to the hospital have gone down to bi-monthly visits. I always get anxious before and during these check-ups and lately I have been staying home with Kez to try to keep my anxiety in check since Marshall has been healthy enough to go on his own.  Each time they check his blood levels- if leukemia returns they would drop, tacrolimus level- this is the drug that suppresses his new immune system so his graft verse host disease is under control, and he meets with a doctor to talk about how he feels.

 His most recent visit he brought up how his skin has been itchy for a few weeks. The doctor said it sounded like graft verse host of the skin. His tacro level that day was later called in at a whopping 15. It is supposed to be from 8-10, so we are hoping the itchiness was due to high tacro levels. Once you have chronic graft verse host (anything 100 days post transplant is considered chronic) there is not much you can do for the rest of your life but try to treat it with creams and medication, stay out of the sun (the ultraviolet rays can cause the disease to spread to liver, etc. that could be fatal) or steroids.

Like many other cancer related ideas it can be a curse and a blessing. With the GVHD disease, the cancer is less likely to relapse--- the new marrow and immune system is working well to fight not only healthy cells, but bad cells. With no graft verse host the cancer is more likely to return. At this point, Marshall has been clinically diagnosed with acute (acute is anything in the first 100 days post transplant) GVHD of the gut. Clinically diagnosed means that they gave him the diagnosis based on his symptoms since when they scoped his stomach and intestines they did not find hard evidence of the disease. This may have been because it was too early to have developed enough for the scope to find or it may have been his stomach and intestines were still healing from the full-body irradiation.

Okay! So some of my wishes that have come true since the last time I posted on this day:

1. I have a child! A handsome, healthy son with his mom's button nose, cute little toesies, and huge hands (he gets those from the Jensen side-neither of his parents have them). He has been talking more and more and I am SO enjoying this stage :). Today we got 3 feet of snow (3 feet on 1/11 ya!) and he just LOVES snow! I also have a much greater reason to adopt/be involved with the IVF science like I always wanted with Marshall's current fertility status.

Oh, I also have a dog. His name is Booker- like Booker T. Washington. Even if we can't have our own kids for a while if ever again, the fam is still growing.

2. If Marshall survives this for years, I have lived my part in my wish to find a cure for cancer.

3. My wish of helping people internationally is coming true. It may not be Save the Children because I need my Master's in International Health before I get the position I would want there. In a way it is more than I dreamed of because I was wanting to help the physical state of children. The new job I have started at the Global Service Center will help people of all ages in Brazil spiritually.


4. Along the lines of helping kids, I didn't think I would learn to craft well with my hands after making a baby outfit with different lengths of arms when I was 12. This only became a desire one day in my mission when I was studying the scriptures about good traits of mothers and one of them is to work well with their hands. Proverbs 31 says she will seek wool and flax and willingly work with her hands. Well, I made this sweet mohawk hat and cute ribbons and pins for my nephew and niece.


Marshall took it to another level and got me a sewing machine for Christmas, so watch out! Something else I have been trying to do with my hands is make some nutritious meals.


5. My wish of all three brothers serving a mission came true with my youngest brother going to Kobe, Japan.

6. We celebrated Marshall surviving one year with the family at Friday's! Now that is a wish come true!

7. This year I made a Drops of Awesome Box for our family. This will be to remind us of the amazing things people do for us and the amazing happenings throughout our days- even on the bad and 'nothing special' days this year. My wish is that every year my family can look back through the drops of awesome and remember how awesome we are and how awesome the world is!



Thursday, January 3, 2013

One Year Ago Today

One year ago today I...
  • woke up and got ready just like any other day
  • knew nothing about leukemia or bone marrow transplants
  • met with a doctor about persistant headaches 
  • submitted a comprehensive training portfolio at work
  • received a phone call from the doctor requesting I go to the emergency room
  • spent nearly an hour in the bathroom because I refused to let the doctor "obtain" the fecal sample
  • had a dangerously low blood count
  • ate a baconator that my brother brought me from Wendy's
  • did not know that over 90% of my bone marrow was packed with cancerous cells
  • received my first blood transfusion
  • did not know I would be diagnosed with cancer tomorrow
Today I do not wish to repeat any of those things - accept the waking up part... and maybe the baconator :) 
It's been a while since I've posted anything and I am happy to inform you its because things are going well. I have a fairly secluded work space back at Lexington to avoid germs. I aced all three online classes I took at the University of Utah. I had my central line removed just before Thanksgiving and no longer have to do 3 hour infusions of Magnesium every day. I finished physical therapy, and I was approved to skip town and visit my in-laws for the holidays.

Kez got a puppy for Christmas and that dog has kept me up more at night than Kezman ever did! It's not that the dog is terrible either - Kez has just always been a good sleeper. It is so fun to watch the two of them giggle/bark and run around the house. They like to pick on each other too. Half the time I'm hollering at the Kezman to play gently with the puppy and the other half the time I'm reprimanding Booker (the puppy) to stop playing rough with Kezman.





















At the beginning of every year I sit down and write myself a letter. I do not read this letter until the first day of January the following year. It is a great exercise to help me take a personal inventory and be honest with myself of what I need to improve. Last year (just days before my diagnosis) I wrote, "Have a positive attitude. Believe in yourself and those around you. Face challenges with courage." How fitting this advice was for what I was about to undertake. I then transcribed the following quotations in my letter:

"He does not believe that does not live according to his belief." - Thomas Fuller 

"Be patient with yourself. Perfection comes not in this life, but in the next life. Don't demand things that are unreasonable, but demand of yourself improvement  As you let the Lord help you...He will make all the difference." - Russell M. Nelson

If this advice was good enough for last year, I'm sure it's good enough for this year. Here's to 2013!