Tuesday, October 13, 2009

Reflection and GVHD update

Today, I had my second GVHD evaluation at SCCA. I arrived at SCCA this morning around 8am for a routine blood draw and another GVHD eval. After my blood draw, I sat upstairs in the floor 6 waiting area looking out at the amazing view of Lake Union and Seattle. I had about 45 minutes until my 9am appt. and I started thinking about where I was at about one year ago. I had just begun radiation treatment at the UW to try and get rid of the Leukemia in my spinal fluid. This was a 12 day treatment schedule with about a half-hour of radiation each day. Needless to say looking back now, this was effectively the beginning of an extremely demanding stretch of time. The biggest demands were in the physical changes that occurred during and following radiation treatment.

I began to develop mucositis on or around the 6th or 7th treatment.....at least I started noticing a change with my esophagus and my ability to swallow. Pain began to set in slowly at first.......and then about a week later around the end of treatments it was getting "very" painful. I was developing a lot of nausea at that time, and I started to become unable to eat solid food.

About 2 or 3 days after my treatment ended, the pain was so unbearable that I begged Mandy to take me to the hospital at around midnight. I was admitted to UW at that time, and was not discharged until about 7 weeks later!! This stretch of time was physically and mentally the "most" difficult period of time for me. I could not eat.....swallow pills, and upon finding out that the radiation didn't even work I was trying to figure out what I could possibly look at for positives. Things seemed extremely bleak, and the main reason I was able to forge on was my wife by my side. Now I have many people that I drew strength from during "all" of my recovery, but during this time specifically....... Mandy was my everything!...... and the main reason I was able to wake up each day and fight against this brutal disease. Seeing her by my side....constantly.....reminded me why I needed to beat this!

During this time my food was pumped in through my Hickman line into my bloodstream. My food was called TPN, and it was a 24 hour supply of liquid with nutrients. This for all intents and purposes is what I lived on during that time......the nurses, nutritionists, Mandy, my mom, etc.... all urged me on to eat other things but for me it was so difficult and I was not able to eat much of anything. This was the start of losing about 40+ pounds over 3.5 months, and I will never forget the intensity both physically and mentally!

Also during this time is when I developed a "foot neuropathy"...called Foot Drop. About my 3rd night at UW, I fell asleep in an awkward position on a morphine drip, and woke up about 6 hours later in a lot of pain! I also noticed I could not feel my left foot. As I began to search through the fogginess of discovery.......I noticed that I could not lift my foot upwards. I also noticed that my foot was numb on top, and the numbness ran all the way up the outside of my left leg to my calf. Walking became difficult at that time and a physical therapist was able to get me a brace which allowed my foot to lift automatically for me. It held my foot at a 90 degree angle with my shin, and every step the brace allowed the front of my foot to "lift".

I could go on..........but the memories seem endless.........anyways it was about time to concentrate again on today and my GVHD evaluation. I was able to see the Long Term Follow Up specialists at SCCA today around 9am, and they inspected my skin, eyes, mouth, mobility, and we all came to the conclusion that my GVHD symptoms have not progressed and had in fact improved slightly. However, this GVHD is something that even if you have just mild symptoms.....you need to pay extremely close attention to any changes. I have received my instructions for things to watch for, and will be paying very close attention to any changes specifically with my eyes, mouth, and skin. The doctor had a good analogy for me to think about. GVHD is like a burning house.........if the fire is only in the fireplace, its all good........but if the fire is spitting out cinders, its time to call for action! GVHD treatment can prevent damage, but GVHD damage cannot be repaired. An example is your eyes ability to produce "tearing". If you lose that ability due to GVHD damage, it is unfixable..........and your eyes will be dry and uncomfortable always. With all of this in mind.........I left SCCA very happy that my GVHD had not progressed, but very thoughtful about "all" I need to pay very close attention to.

I hope all of those reading this find themselves doing well, forging on, and are looking forward to all of the positive things that surround each of us every single day! I care about all of you and hope things are going well!

Take care.....Tyler


  1. Tyler,
    You and Mandy have truly been inspiring the way you have handled everything thrown your way. I often check you blog and have shared with Tom, the ups and downs that you have been through. Even during the times that were tough on the two of you it has been obvious that you have battled them together. You are extremely lucky to have a person like Mandy by your side. I don’t really know either of you all that well but have drawn strength from your strength during the time Melissa (our daughter) has been going through treatment and the effects of the treatment that she is still battling. I am grateful that her battle has never been as tough as yours. I was hoping to see you and your group at the walk but didn’t run into you, I was thinking about you that day and the fact that you were able to join in the walk this year was very exciting.
    Just want to say thank you for your blog and the strength you have shared.
    Valerie (and Tom) Hoffman

  2. Beth G. referred me to your inspiring blog. My Jeff has the t315i mutation just like Beth and your friend Han's. I just left Han's a note too. Jeff had a transplant on October 16th at SCCA and is now starting to experience the mucositis. And to think you were just there and he was too! I will share some of your encouraging thoughts with him, and your father's too! Hang in there! Jeff's web link is www.caringbridge.org/visit/jford