Journal Feb. 23

Journal 2/23

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

One week today since the transplant. I am continuing to do very well. My
platelet transfusion gave me the best jump so far. I went from 9,000 to
25,000, a jump of 16,000. My best jump before that was 9,000.
Unfortunately, the platelets dropped this morning to 14,000. I think the
platelets dropped because I had a very minor nose bleed in the evening.
Enough, however, to use up some platelets. This morning my Hematocrit is
24%. Doubtful if I'll need blood today. Transfusions will continue to be a
regular part of the program until my marrow kicks in and produces the blood
cells on it's own.

They increased my PCA (Patient Controlled Analgesia, analgesia means pain
med) yesterday to help control the mucositis pain. (Remember, the pain med
is pumped directly into my Hickman.) The medicine being used for pain is still dilaudid.
They increased the continual flow of PCA from 0.3 mg to 0.5 mg per
hour. I also have a button I can push as often as every 6 minutes to give me
an additional dose. The dose I get from pushing the button was increased
from 0.1 mg to 0.2 mg. I only use the button when I am eating, which is the
most painful time. The increased pain med allowed me to eat well yesterday.
A small victory everyday I can go without TPN (nutrition through my Hickman).
My weight has come up from 164 to 166 lbs. I entered the hospital at around
173-174 lbs.

I continue to have three different broad spectrum antibiotics flowing through
my Hickman. Fortunately, no infections yet. I continue to have small
fevers. However, they have always dropped off rather quickly. I still take
various daily pills, such as Fluconozol (antifungus) and Prilosec (controls
acid reflux in stomach). Acid reflux is basically burping up acidic fluid
from stomach. This would be very painful on a raw esophagus. I was also
given a pill called Colace. Colace is a stool softener. It worked great. I
had a perfectly normal bowel movement yesterday evening. Just what you all
wanted to hear :). Moving to the other end of the GI tract, I tried something
new for mouth sores. My nurse gave me this triple mixture of malox,
lidocaine, and benedryl. I rinsed my mouth with a small amount and then
swallowed. This stuff tasted like chalk and numbed everything. It was
actually a little scary, because for several minutes I couldn't swallow due
to the lidocaine numbing my throat. Eventually, the numbness and taste went
away. I have decided I won't use the mixture again.

I have been taking potassium tablets every couple days over the last week.
The tablets are large, yellow, circular tablets which are very difficult to
swallow. They can give potassium through the Hickman, but it would take
several hours to administer the dose. I'm fine with the pills. Potassium
and sodium are called electrolytes. Electrolytes are found in all cells and
help transfer the electrical impulses which travel through all cells. For
example, your heartbeat is controlled by electrical impulses. If potassium
were too high, you could be subject to a heart attack. If your potassium
were too low, your heart rate could become irregular...which is dangerous.
Muscles will also cramp up if they don't have enough electrolytes.

Not to complain, but the most difficult part of my day yesterday started around
4 pm. I started hiccupping again. The hiccups continue to be uncontrollable
and strong. I can barely speak when the hiccups are going strong and am
often left short of breath. They do stop if I am given benedryl through my
IV and go to sleep. I don't want to go to sleep at 4 pm, however, so I just
tough it out. Actually, if hiccups are my biggest problem, I am thankful.

I was visited yesterday by Daryl Smith and his grandson Joey Vanaman. Joey is one of my students. Daryl's son Steve is a very close friend since high school. Steve took the picture on the home page of my website. My in laws, Bill and Pat Potthoff stopped by too. They are living at our home taking
care of our boys. It is so helpful having them at our home because it helps the boys feel somewhat normal throughout this whole ordeal. Anne Marie Petersen stopped by too. Anne Marie's son Jacob is one of Tanner's best buds. Michelle and my youngest Tanner spent the night with me. I love
these slumber parties. Tanner is a great snuggler.

We had a frightening experience last night. Tanner and I took a walk together through the hallways and when we stopped to talk to some of the nurses at the front counter Tanner accidentally tripped into my IV lines connecting the IV pump and my Hickman. There was a strong tug on the lines
which I grabbed immediately in hopes of stopping the Hickman from being
pulled out of my chest. You can only imagine the fear I felt as the nurses
froze looking at the situation in front of them. A couple nurses
immediately took me to my room. I was very scared. I prayed continuously..."
Lord let the Hickman be OK." Having a Hickman pulled from your chest when
neutropenic is a very serious situation. The nurses quickly examined the
Hickman and to our relief everything was OK. What saved the Hickman was a
necklace made out of tubing by one of my nurses, Stephanie. Stephanie
secured the Hickman lines to the necklace so in the event of a strong tug on
the lines the tubing necklace would hold the line in. The necklace worked.
Considering the seriousness of a pulled Hickman, Stephanie probably saved my
life. Praise the Lord everything is fine. The whole situation was a
complete accident. The lines are clear and run close to the ground, making
them difficult to see. Little Tan Man just didn't see them. I have learned
from this situation. Always stand close enough to the IV pump stand so a
person can't walk between the pump and myself. Also, take great care not to
trip when going for a walk.

I have said to friends and family several many times that I think Tanner (my
youngest-6) handles the whole transplant the best because he doesn't really
understand the seriousness of it all. I was proven wrong last night.
Tanner, Michelle, and I were playing UNO together and out of the blue Tanner
says, "I hope Daddy doesn't die from his Cancer. That really scares me." A
very difficult moment for Michelle and I. Never underestimate what your
children understand and feel. My response to Tanner was to tell him, "God is
taking very good care of Daddy. God has a perfect plan for Daddy and we will
trust him completely." Tanner's response, "I know Dad." Many adult's
faith pales in comparison to the faith of a child.

A verse I cling to:

We know all things work together for the good of those who love God-those
whom he has called according to his plan. Romans 8:28

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