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

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.

Sunday, July 13, 2014

First Week in Philly

Philadelphia has welcomed us with open arms! Not only do we have an affordable place to stay, the friends of the HEADstrong foundation have provided gift cards for groceries and toys for Kezman. Now if we could just get this treatment underway...

My Lucky Charm :)
We met with Doctor Porter on Friday. He explained that he is meeting with the FDA on Monday, and they are hopeful to get things started. He also listened to my lungs and used the adjectives, "Wheezy" and "Mucky". In hopes to avoid a repeat pneumonia he prescribed some serious antibiotics.

I still have neuropathy in my fingertips. It doesn't completely disable me from playing guitar, but any song that requires a high level of dexterity presents a formidable challenge. It's akin to trying to play guitar with gloves on. Even typing this blog entry is a little tricky - I can scarcely feel the keys and I have to trust my fingers know what they are doing.

Fierce Family
Kezman is definitely a "threenager" now. We are curious to know how much of his acting out is due to the huge change in our living circumstances and how much is typical behavior for a child his age.

Crabby Kezzy
It may sound a little scary or even crazy to participate in a treatment after 3 people just died from it. Keep in mind however nearly 100 other people have undergone this therapy successfully. The harsh reality is that if I don't do something the cancer will win. Although this protocol has its risks (as did my first two transplants) it is the best shot I have at a long term remission.