Journal Feb. 24

Journal 2/24

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

8 days post transplant. Yesterday was sure a beautiful day. When I
look out on the water of Lake Union I find myself getting excited about my
class reunion which is going to be a cruise on Puget Sound. My 20 th reunion
this summer. My how fast time goes by.

Prior to my transplant Dr. Petersdorf said, "A transplant is no walk in the
park." Well, yesterday was one of those tough days. One of the problems was
the mouth sores on my tongue. Despite the pain medication (dilaudid) and the
regular saline rinses, the pain on the sides of my tongues is extremely high.
On a scale of 1 to 10, the sore pain is a 10. Talking and eating are very
difficult too. Smiling feels good though. Mouth sores are always worst in
the morning. Breathing through your mouth while sleeping dries out the
tongue, increasing the pain. To deal with the pain I press my PCA pump very
frequently. However, the pump will not allow you to get pain medication in
increments of less than six minutes. In other words, you could press the
pump a 100 times, but you'll only get a dose after six minutes. Obviously,
they don't want you overdosing on the pain medication.

I was also very nauseated yesterday. The doctors said it could have been
several things. Increase in pain med use, something I ate, residual effects
of chemo and radiation, anxiety, or just a combination of everything. My
body has been through an awful lot. The nausea kept me from eating or
walking around. Walking around made me want to throw up. As a result, I was
lying in bed most of the day. No walks or bike rides...frustrating.

The main thing yesterday, however, was my frame of mind. Towards afternoon
I began to lose it mentally. I couldn't maintain a coherent conversation or
hold a thought for more than a few seconds. I kept saying the most off the
wall stuff which had nothing to do with the conversation. Michelle said I
kept talking about my knitting class. (As far as I know, I don't knit)
Those of you who know me are probably thinking, "that's the way John always
is." I think my wife and nurses thought it was funny, but I was just so
confused. I kept having these bizarre day dreams. I'm going to talk about
all this to my doctor when he comes by this morning. I'm sure it's a
combination of being very tired and all the medications I am on.

I ended up not getting any transfusions or platelets yesterday. I still
continue to get a growth hormone shot for the bone marrow every night. My
temperature was up yesterday to 38.3. They did a blood culture to look for any
infection. It take a couple days to find anything. A couple Tylenol and by
evening my temperature was down to a normal 37. I am taking Potassium tablets
almost daily due to low potassium level. I continue to get IV antibiotics,
as will be the case for the next few weeks. To maintain hydration, saline or
potassium solution is continually flowing through my Hickman at a rate of 60
to 150 ml/hour. Today my Hematocrit is 27%, up 3% from yesterday without a
transfusion. Occurs sometimes as body can produce some RBC's without the
marrow. My platelets are 14,000, down from 16,000 yesterday. My marrow is
slowly beginning to become active as my polyneutrophils (WBC's that fight
infection) have went from '0' on day one of my transplant to '5' today.
Normal range is 1,800 - 7,000. Remember, 21 days is about how long it will
take to get my blood levels back to normal.

Additional meds for today: Prilosec (stomach acid), Colace (stool
softener), Zofran (nausea)

I forgot to mention this yesterday, but on Monday afternoon I decided to
change my hair style. I went for the Marco Pantani (1998 Tour De France
Winner) look...completely bald. Actually, I think I look very good. I might
stick with this style, along with the addition of goatee.

Thank you to all who visited me yesterday. I appreciate visits so much, even
when I'm not feeling that great. Family and friends lift me up. My mom came
by. She brought me some treats....candy, nutrition bars, etc. You know
moms, always wanting to keep their children well fed. Ladd and Beth Wolfe
stopped by. Ladd teaches 4 th grade at Endeavor Elementary. They have two
little girls. We ran into their family in Leavenworth last year and really
enjoyed their company. Fred Morrison, friend from church, visited yesterday
and brought his daughter Sarah (present student) and son Adam (former
student). They also brought Amy Holmquist, student of mine, along. Pastor
Walt also visited. He is the most encouraging man I have ever met. The
Lord has blessed him with the gift of encouragement. The best visitor,
however, was Michelle. She listens to my worst complaining and puts up with
my attitude when it isn't so pleasant. Her patience is unending. She does
things for me even when I don't ask nicely. I know one of her greatest
gifts is compassion and it has made all the difference in my ability to get
through tough days like yesterday. I love her and thank the Lord daily for
her. I am truly a blessed man.

Good verse for a tough day:
Be strong and courageous. Do not be terrified; do not be discouraged, for
the Lord your God will be with you wherever you go.
Joshua 1:9

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