Journal 2/25

Journal 2/25

Main Page • John's Journal • CLL Information • Contact John • Seattle Cancer Care Alliance • MD Anderson

9 Days since the transplant. The main objective yesterday? Pain control.
The mucositis pain, especially in my mouth and throat have been overwhelming.
The sides of my tongue and throat are one big sore. The tongue is loaded
with nerves, making it a horrible place to have sores. Dr. Petersdorf told me I would get painful mucositis pain because of all the radiation and high dose chemo. However, I didn't realize just how intense the pain would be. Fortunately, my diligent rinsing with saline solution kept the mouth and throat sores at bay for the first week. Allowing me to eat well and put off TPN (Total Parentrial Nutrition...basically food through an IV bag) . Now I will eat whatever I can just to keep my GI tract healthy, but my main nutrition will be TPN.

Last night was my first bag of TPN . The bag contains 2,068 ml of a
transparent yellow liquid, infused through my Hickman at a rate of 86 ml/hour. It takes about 24 hours to infuse the whole bag. The TPN bag contains various amino acids (amino acids form proteins...essential for muscles and chemical reactions within cells), vitamins, and dextrose (sugar for energy production). In addition to the TPN bag the doctors infuse a 500 ml bottle of lipids. The lipid liquid looks like milk. Lipids are needed by cells to allow electrolytes (potassium and sodium) and vitamins to pass in
and out of the cells. The bottle of lipids takes about twelve hours to
infuse. An interesting note: One bag of TPN costs about $300 dollars. That's a lot of cheeseburgers.

Yesterday, I was visited by Michelle's dad, Bill. He came to take her home
to be with our boys. Karen Davis came by too. The Davis's are good family
friends. I also had a great visit with Kelly Vigna, a former student of
mine. My buddy Brad Robinson stayed with me last night. I don't think he
got a very good night's sleep. I was up every hour to go to the bathroom,
rinse my sore mouth, or to allow the nurse to carry out all her duties...take
vital signs, take blood, change IV bags, etc.

My hematocrit is 25% today and my platelets are at 8,000. I will be getting
platelets today, but no blood. My polyneutrophils (infection fighting
WBC's...also known as polys) are slowly coming back. I am at 9. All I need
is about 6,500 more. The nightly growth hormone shot will help the polys to
come back more quickly.

I think it is incredibly important for a cancer patient (any patient for that
matter) to have the utmost confidence in the medical staff taking care of
them. I can easily say I know I am in the hands of an incredibly talented
and compassionate medical team. The nurses and doctors here are clearly the
best. Every morning at 7:30 am Dr. Michael Chen, one of the doctors on my
team, comes by to see how I am doing. After my morning examination he
handed me a couple cycling magazines he picked up for me. I thought that was
so cool.

Even though the mouth pain is very difficult, my spirits are up and I am
feeling so good about the whole transplant. I have been given a second
chance on life through this transplant and I am going to make the best of
every single day. Even the days I have mucositis. Wishing all of you
reading this journal a great day filled with the Lord's blessings.

Having a tough day?
Come to me, all who are tired of carrying heavy loads, and I will give you
rest.
Matthew 11:28

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