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

Thursday, November 12, 2015

Other Plans...

As Amanda and I continue to search for a cure for my leukemia the words of John Lennon continue to ring true, "Life is what happens to you while you're busy making other plans." 

Nearly four years have gone by and we're still fighting. As I sat down to eat breakfast in my little hospital room this morning I realized just how lucky I am. 

I realized that if someone hadn't donated that bag of blood hanging above my head - I wouldn't be here. As a cancer patient I'm lucky to know how fragile each moment is. It keeps me humble that's for sure and grateful for that special gift - to breath - to be alive. 

When placed in a position of suffering, one often wonders, "What is the purpose of this?" and "What am I supposed to learn from this experience?" If I've succeeded at anything at this point it is getting people to pray. Your prayers are truly supporting a miracle. 

Most recently my fight with not one, but three bacterial infections that sent me into septic shock. A state that has a mortality rate of nearly 50%.

Let's have a look at the culprits:

Since my trip to the ICU I have been able to fight off the first two bacteria with the right antibiotics. However, the third bacteria (which I'm told is pretty wimpy to someone who has a healthy immune system) has been lingering. My doctors suspect that it is hiding out in the central line in my chest. 

To avoid future complications we inserted two IV lines in my left arm today and tomorrow we are scheduled to remove my central line and hopefully any infection that may be hiding there.

The plan at this point is to pull the line and continue to allow my body to recover from the last round of chemo. It could take a couple of weeks to reach this point but I am getting neupogen shots each day to help speed up the process.

At that point, barring any other setbacks we will proceed with three days of preparatory chemotherapy and then introduce my re-engineered t-cells. Thank you for your prayers. I am ever grateful for your support. 

Sunday, November 1, 2015

You Say Goodbye and I Say Hello

Goodbye Utah, Kez, friends and family, house, cars, dogs.  Hello Philadelphia, City of Brotherly Love, Hospital University of Penn, and T-cell Try Number Two! We at least made it across the country. There were many days that I wasn't sure if we would even make it this far so this is a step in the right direction and a feat that was not easy! As many of you know, Marshall had been in the hospital back in Salt Lake for quite some time with severe pain. He was pretty much only released Thursday so he could pack and fly out to Philly early Monday morning. The severe pain is the result of the leukemia growing out of control over many spots in his body namely his hip, knees, ankles, wrists, and back.  We flew here with the help of wheel chairs and first class flights (thank you Jones)!  Our flights took all day Monday and the plan was to meet with the doc Tuesday and admit Marshall Wednesday to start prep for t-cells. As we are now used to, the plan all changed...
Overlooking the Delaware River

Tuesday morning Marshall awoke in our hotel room and could not move. He informed me (or more like cried and screamed to me) that he could not get out of bed; that we would have to call an ambulance because he could not so much as lift his arms to get dressed. I didn't like the idea. We've had our fair share plus some of emergency room experiences and the one here in Philly was by far the worst. Waiting in the ER for five hours while my husband screamed in pain then waiting another half day or so for a room to open in the hospital did not seem like the best option to me. Don't get me wrong, I was listening to him as he begged me to call an ambulance, but it seemed to me he was in a state of anxiety and panic. He hadn't slept much the night before due to his pain. I seriously pep talked him for about 3 hours which is odd for us because usually he is the peppy one. I told him if he could just roll to a wheel chair I could get him to the appointment with his doctor and we would ask the doc to admit him TODAY.  I also assured him that if he was not able to roll into the wheel chair that I would dial 911.

He did it. It hurt. It was painful, but I helped him dress and roll over into that wheelchair. We took a taxi to the hospital and after meeting with the doctor we were told Marshall is not ready for t-cell treatment due to the cancer being so out-of-control as I'd predicted he'd say (we only heard that a few times last year). If he were to receive t-cells at this stage either the t-cells would reek havoc OR they would take a while to react if they work and they would have to treat the cancer with steroids or chemo that would kill off the t-cells.  So last year, there wasn't enough leukemia to create the reaction wanted. This year there is too much. I pray we can find that sweet spot and try this treatment again. So as the plan is now, we will wait for Marshall's counts to tank, then recover, then go on to what we planned. That means we won't be home for Christmas. As we know, that could definitely change too.

Today is now day 3 out of 5 on a chemo called clofarabine. It's used to treat patients with refractory disease. He finished his third bag so that means he is now officially half way done with treatment. We are not newbies to this, so we know most side effects come about a week later. His counts are definitely dropping, but they were super low prior to this due to cancer building up in his marrow. He finally had a break today from transfusions, but up to this point in the hospital he has had to have either a blood transfusion or platelet transfusion or both every day since he was admitted. The first 2 days the pain did not let up and I was nervous the chemo would do nothing to the disease.  Finally today he seems a little better. He walked a little without the use of a wheelchair. In fact he is walking to the bathroom without his walker right now and I'm telling him how proud of him I am.

Marshall's first walk day 2 in the hospital. He made it half way down this hall.
Some moments I realize how trapped and consumed I've allowed myself to become in this cure crusade. I do think it is noble to lose myself in helping my husband and the search for a cure, but I also have come to realize that it's caused me to become depressed at times and not myself. Dear friends, I am sorry I often cancel plans, but click here if you want to know more of why caregivers often cancel.  I feel like I've lost many friends over the years (although the friends who have stayed in touch are golden friends- the kind that you want to surround yourself with because they love and help when life is hard and keeps being hard) because my time is completely consumed with this. When it isn't, it's with my little boy or my work. Speaking of our little boy, my heart hurts missing him so much! He chose every single time I asked him to stay back home where he could go to pre-school and soccer and be with grandma. They have a very special bond and I am so, so beyond grateful to my mother for sacrificing so much so she can care for him and our dogs while we are battling on across the country. We watched his Halloween program the other day and he did such a great job. We also watched his last soccer game. I know this takes a toll on him, but we FaceTime him about five times a day (sorry mom). If Marshall can get stable enough I will fly home to see him or we will fly him out here to us.
Poems and songs about Halloween
Speaking of hurting hearts, these four years have taken a toll on my health as well in the form of chostrocondritis. It's not terrible- just a condition every once in a while where my heart literally hurts. It's usually only brought on when there is a lot of stress and I am sure it will go away completely if/when that gets better.  I haven't talked about this much on our blog, but I read two other blogs that made my heart hurt. One was comparing infertility to cancer by saying that because those experiencing it don't talk about it much, it hurts even more. The other was comparing depression to cancer for a similar reason. I wanted to scream from my hurting heart that cancer often causes both infertility and depression. This has been the case with us. We tried two cycles of in vitro that failed this year. We've stared at hospital walls that have felt like prison walls. I don't say this to compare burdens. In fact, that is what bothered me about it so much in the first place.  The fact is, we ALL have our struggles. Be they small, large or somewhere in between. If you're experiencing some kind of burden in your life click here. I was reminded recently at a Peace Retreat of that popular analogy that if we were to all write down our problems on a piece of paper and throw them in a pile we would want to grab our own right back after seeing the others!

When you're going through a rough patch which can be years or a whole lifetime, just remember that often posts on blogs, FB, instagram are not the whole picture.  In the age we live in sometimes it can feel like our lives suck compared to those perfect posts. One of my favorite lines from Marshall's songs says, "There was a wise man who could only see the way the world was supposed to be". Talking about it is one thing but doing it is a whole other. I'm not a good talker, but I'm a good listener. It's important to talk about the hard things. I aspire and try to be a good doer. Einstein invented the equation E=mc^2 to try to help the world. If he'd known that it would have been used for that atomic bomb he probably would not have lifted a finger. Sometimes we portray our ideal world through words and pictures, but often it isn't reality. I'm guilty of this too, but it's important to be real and personal. 

I'm grateful for being able to share my sorrows AND joys through this blog. Through the crowning atonement, we can come together AT ONE. One thing I have learned to appreciate more about my brother and Savior is that he didn't see himself as a victim despite all that he had to endure and his world and friends crumbling around Him. He forgave his crucifiers and endured his pain for a greater cause of peace in life, death and good will to men. He went into his mission knowing that it wouldn't be an easy feat! That it would mean torment and pain, but would also give joy and life. He allowed so much pain so we could all learn to serve each other instead of hurt each other. If we remember Him more throughout our lives, through him our sorrows and burdens can be eased. That equals less pain for him in that atoning moment. Less comparing. Less hurt. More love, goodness, and help.