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

Thursday, April 25, 2013

Keep A-Goin'!

I started my high dose Blinatumomab yesterday at about noon and so far I haven't had any fevers or chills. My face is a bit flush again so Amanda thinks they are on the way. Only time will tell.

Hat's off to the miles to give team! I wrote a song for them the day after the Music for Marshall benefit and Landon had them post it right on the main page of their website! Check it out: Miles2Give

On Monday I went to the exercise class. When I got there everyone was sitting in chairs and stretching while someone played the harp. I sat down and joined them. It was very relaxing. I was thinking if this is exercise I am in! Then the instructor told us is was time for our last stretch and then she was turning the time over to someone else. Then we actually had to exercise... bummer.

We celebrated AJ's Birthday on Tuesday, and thanks to some kind hearted Houstonians, namely Michelle Cotton and Kristy Stoddard, we had a decent little evening with cake and presents and all the fun stuff!

Earlier in the day I took AJ to lunch at the fanciest restaurant in the hospital. She looked so lovely with her hair put up I had to snap a photo. The next morning I attempted a pencil sketch of it for her. This is what happens when I try to practice "Marshall Art"...

I call it the, 'Manda-Lisa' 
I've been trying to read from the "best books" as we are counseled in section 109 of the Doctrine and Covenants. A book of poetry given to me by a surprise visitor last week (if you read the last blog entry she is my cousin's, husband's, sister's, neighbor's, dogs previous owner's, aunt). 

Okay maybe just stop after the first three associations but even then it's a bit complicated. I've enjoyed thumbing through selected works from Emerson, Thoreau, Whitman, Shakespeare, and many others. I particularly enjoyed the following down to earth versus penned by Frank L. Stanton:

"If you strike a thorn or rose,
Keep a-goin'!
If it hails or if it snows,
Keep a-goin'!
'Taint no use to sit an' whine
When the fish ain't on your line;
Bait your hook an' keep a-tryin' -
Keep a-goin'!

When the weather kills your crop,
Keep a-goin'!
Though 'tis work to reach the top,
Keep agoin'!
S'pose you're out o' ev'ry dime,
Gittin broke ain't any crime;
Tell the world you're feelin' prime -
Keep agoin'!

When it looks like all is up
Keep a-goin'!
Drain the sweetness from the cup
Keep a-goin'!
See the wild birds on the wing,
Hear the bells that sweetly ring,
When you feel like surgin, sing - 
Keep a-goin'!

We received the exciting news that if all goes well I can leave the hospital and begin outpatient treatment on Monday! More exciting however, is that my Mother is coming to visit next Thursday and she is bringing Kezman with her! It's a good thing too because I think he's starting to miss his Mommy and Daddy.

I don't know bout' the rest a ya'll, but I'm-a keep a-goin till then, an' after that I'mna keep a-goin' some more!

Friday, April 19, 2013

Fevers, Sideburns, and Handwriting Samples

We checked into MD Anderson on Tuesday night and started the Blinatumomab on Wednesday afternoon. My room here really is nice, it almost seems more spacious than the hotel we stayed at for the first few days. They rebuilt this wing a little over a year ago so everything is shiny and new.

Every day I provide a handwriting sample to see if I'm experiencing tremors or neuropathy in my hands. My penmanship has never been that great - good luck to the handwriting analysts! Check out all the warning labels on the Blinatumomab. Nice eh?

If the therapy is successful in bringing me into remission, I will have to undergo some pretty intense chemotherapy in order to completely hollow out my bone marrow and eliminate my immune system. This will prepare my body for a second bone marrow transplant. This time we can't use radiation. Initially I was excited about this (radiation was not kind to me) but that only means I have to endure chemotherapy with a higher toxicity. 

If that doesn't kill me (sorry but that's the truth) then we move for a second bone marrow transplant. Transplants have a 99% success rate of grafting, but transplants after relapse only have a 25% chance of keeping someone in a long lasting remission. Not odds you want to take to Vegas, but we don't have much other choice.

Yesterday was pretty exciting I started getting red in the cheeks and then fevers and chills. Last night my fever hit 103 - I soaked through two shirts! The good news is that Tylenol seems to be working in bringing the fevers down.

For some reason only my sideburns are growing in. If I put on a baseball cap it looks like a have a head of hair underneath - I wish I could grow some huge lamb chops and really pull a gag, but that's probably not going to happen right away.

Had a neat visit yesterday, try to follow this; my cousin Mindy's, Husband's, Sister lives in a suburb of Houston and printed out some family pictures for us. She even framed them so we could put them around the room. It feels much better in here now. I can't wait to bring Kezman down when I get out of this joint, I miss that kiddo!

I pulled out my guitar and played her a couple songs and said, "That's all I can really give back right now." All I can say is wow, the kindness of others is truly humbling. I've been thinking a lot about the account recorded in the 2nd chapter of Mark regarding the man afflicted with palsy - a disease that caused night sweats, shaking and crippling of the limbs and often proved to be fatal.

Recently it was pointed out to me that there was no way this man could come to Jesus to be healed on his own, the record states that "four" carried him. When they arrived at the house it was too full to get him through the door - did they give up on their friend - no, they climbed up on the top of the house, pulled the roof apart and lowered him through! 

We often think of the miraculous healing that followed, but I want to focus on these four friends. What examples of charity, and faith! I want ya'll to know that you represent the four friends in my journey to be healed. I couldn't do this on my own, you have carried me, you have climbed the roof, you have lowered me down at the feet of my Savior. If it is His will I will be healed. 

Sunday, April 14, 2013

Mr. T-Cell V.S. Luke Kemia

It has been quite a whirlwind of a week, I will do my best to give you some highlights. On Monday morning we met with staff, nurses, and doctors, to set up my patient information and review my medical history. I received a cool wrist band free of charge! After some lab work we met with Dr. Jabbour. He is assigned to my case and works on a team with over 20 other doctors.

He discussed many of the ALL research studies they are conducting at MD Anderson with us. I will likely be participating in the Blinatumomab or "BiTE" study so I won't waste time explaining the others to you.

Let's start with T-cells: T-cells are a particular white blood cell that fight off viruses. Think of them as big tough warrior neutrophils. The problem is my T-cells (technically the donor T-cells from my first bone marrow transplant) are not effectively locating and eradicating my cancer. 

The drug - Blinatumomab - identifies a genetic marker on my T-cells (marker 19 to be exact) and helps them (the T-cells) locate and destroy cancer cells. I like to think of it as a fight promoter that is setting up microscopic boxing matches within my bone marrow.

After a few days of tests (blood, vitals, a chest x-ray, an EKG, a lumbar puncture, and two bone marrow biopsies) I was ready for a break. We checked out of our hotel and headed two our new home away from home. A friend of a friend, set us up with an amazing couple who has been more than gracious to let us stay with them.

It is lovely house about 15 or 20 minutes South of the hospital. Yesterday, (Saturday) Amanda took me out to spoil me a bit before we check in to the hospital to start the treatment. We went to Salt Grass Steak House for lunch. The service was amazing and the food was delicious! It was nice to spend some time just me and my sweetheart before we are going to be stuck in a tiny hospital room for days on end.

As long as my lumbar punture is clean (we haven't heard otherwise), I am scheduled for an appointment at MD Anderson tomorrow at 10:00 A.M and will begin my treatment on the Blinatumomab protocol sometime in the afternoon. 

From what I understand - the drug was developed in Germany and the study is in its second phase at MD Anderson. Only 24 patients have participated in this study previously, with a success rate of over 50%. Because it only targets the cancer this is technically not a chemo-therapy, but rather an "immuno-therapy". The most common side effect is hand tremors (not good for a guitar player) but luckily they go away after you discontinue the drug.

As things are planned, Amanda and I will spend about two weeks at the hospital as they begin the treatment and monitor me closely. Then we will return to our new friends, the Edwards' house, and continue the next four weeks of treatments there (obviously with regular check ups at the hospital). 

I am so lucky to have Amanda here to support me. She is so good about doing research and asking the right questions when we meet with the doctors. I don't know what I'd do without her!

Our hope is that this new treatment will bring me back into remission. If we are successful, I will undergo a second bone marrow transplant and hope that my new T-cells are a bit more agressive than my previous transplant.

Friday, April 12, 2013

MD Anderson

I do not want to steal Marshall's thunder, but I did want to catch y'all (as they say in Texas a lot) up on where we are. Marshall was not in remission- in fact he was far from it at a whopping 32 percent leukemia blasts in his marrow still when he was biopsied at LDS Hospital in Salt Lake. The first thing the doctor asked was if we have any rich relatives to help pay for a potential clinical trial in Texas at MD Anderson since he had already called Huntsman and surrounding institutions and they said there was nothing more they could do for him. "Nothing more they could do". I was not expecting to hear those words for a very long time. Prior to the doctor coming in we had already discussed the possibilities. We both FELT that he would not be in remission, but we always have that hope of an unexpected miracle!
Marshall said with a smile, "ok what is next?" Through tears I asked a lot of questions. Luckily our wonderful sister in law Julie came not too long after to take me to lunch so I could not mope for long! I wanted to give Marshall some time alone in case he needed to cry, but he did not. We packed up our bags and took a neutropenic Marshall home where we started the beginings of a journey to Texas in hopes of "something more we could do" and here we are!

After a 10 miler with wonderful sisters Julie and Melanie, visits with many family members and surprise friends (Jason Brown!), a wonderful general conference and a few family pics, we hit the plane. I was nervous to fly with him alone because he had to stop taking his blood thinner prior to being seen (you think the possibility of blood clots is higher on an airplane- try being a blood cancer patient on an airplane!) and he had kankles due to water retention (first time that has ever happened in his treatment). So he had to balance elevating feet to avoid more retention and walking around just enough to avoid blood clots.
We miss our boy like crazy! A marvelous member of the ward here named Sherilyn picked us up and took us to our hotel where we have been going to and from the amazing cancer center of MD Anderson ever since. The lines are crazy long. The waiting is even longer. Yet the staff and the doctors are efficient and kind. When we were going through demographics the lady checking us in had never heard of the "LDS" faith. Marshall jumps on every opportunity he can to share his testimony of the gospel. The other day his brother Jordan sent me a text saying he'd just received the best phone call of the day. Marshall had accidentally pocket dialed him while sharing his testimony to a man outside our shuttle.  That same shuttle ride there were 2 college students from Brazil who asked how I know Portuguese. I told them I read the Book of Mormon! I can't imagine going through this trial without the gospel truths.
Well in summary, last biopsy showed that Marshall is now at 61 percent blasts. To calm his cancer, but HYPE him up they gave him 15 mg of dexamethasone yesterday. Right now he is sleeping beside me after his spinal tap and receiving two more units of blood.  This is the last test to see if he qualifies for the blinotumomab study that we are hoping to get into. If he does, we will post more details about that. It is not a chemotherapy, but an immunotherapy.

Cameron, a friend, has also been a caregiver and described it in a way that resonates. "Over the next two months, our lives were turned upside down. Before [his wife] was diagnosed with this awful disease, we both held full-time jobs. After the diagnosis, [she] could not work, and I could only work part-time. I also was responsible for [her] and our daughter. This was an overwhelming experience, and I often found myself dwelling on the worst case scenario, despite my best efforts to stay positive. I often feared that [she] would die, we would become broke, and I would have to raise [our baby] all alone. As a result, I would often break down and cry alone. But, whenever I was around [her], I would never shed a tear. I knew that [she] depended on me to be the strong one, and the last thing she needed was to see my fears.
[She] and I had many family, friends, and even strangers to help us during this time. Many offered comforting words, and others offered financial assistance. I always encourage other cancer caregivers to use all the help that is offered to them. It will allow you to realize that you are not going through this by yourself, but you have people who care about you.

Being a cancer caregiver is an extremely difficult job, and you will definitely experience many different negative emotions. However, this is a job that you cannot simply quit; therefore, you have to remember to hold on to the hope that everything will get better."

I still have that hope! Hope that new immunotherapy will work! Hope in Jesus Christ that he overcame death! Hope that unexpected miracles still happen daily!

Monday, April 1, 2013

It Takes a Team

The last week has been somewhat uneventful (which is a good thing). My chemotherapy treatments depleted one of my blood clotting agents, so yesterday I received an infusion of Antithrombin III.  It sounds like the third episode of a bad sci-fi series, but according to Wikipedia it is a protein produced by the liver composed of 432 amino acids that assists in blood coagulation - not complicated at all - as you can see by this illustration.

Who knew that your blood clotted using tiny yellow sticks of dynamite stuck together with different colors of old chewing gum?! 

My big bone marrow biopsy is scheduled for tomorrow. We will find out whether the chemo was successful in eliminating my cancer or not. Although the biopsy is Tuesday, we won't get the results until Wednesday, and yes I will be sure to let everyone know as soon as I do. 

One benefit of being hospitalized in March is that you have plenty of time to watch college basketball. The tournament had a tragic moment on Sunday when Louisville guard, Kevin Ware broke his leg against Duke. I was surprised to see many of his teammates and even his coach in tears. It was clear, they didn't want to see their friend in so much pain. Despite the set back they went on to victory, holding up their fallen teammates jersey and dedicating their victory to him. 

Thank you to everyone on my team, for your prayers and your visits. You continue to lift me up as I work through this. It is clear you don't like to see your friend in so much pain, and I am confident that we can win the victory.