I love the Lord!

First let me start out by saying I have neurofibromatosis.  This is a
condition that causes tumors to grow on any and all nerves.  The tumors
can also grow on the surface of the skin as little bumps and a person
may have just a few tumors or thousands on the body. These tumors will
increase in number with age.  At times these can become cancerous or
cause the loss of hearing, vision or limb.

At age 13 while living in Alabama it was discovered that I was not
growing.  I was the size of an 8 years old.  Let me insert here that I
was under care of the doctors and they never gave it a thought as to my
age and size. I was sent to Walter Reed in Washington DC.  Tests pointed
to a tumor on the pituitary gland. Mom was told if the tumor was not
removed it would be fatal and they were not fully sure it could be
removed.  They wanted me to finish the last 7 weeks of school and return
for a test to pinpoint the tumor and for surgery.  I had been at Water
Reed for 5 weeks and they didn’t want me to miss any more if at all
possible. At the end of the school year dad retired from the Army and we
came to Tennessee.  I returned to DC for the test and x-rays and
possible surgery.  But no tumor could be found.  Back at square one the
doctors decided to give me Human Growth Hormone.  A little while after
treatment the growth spurt started, I grew 8 inches in one year.  Mom
could not keep me in pants.  LOL.

I have a very bad habit of hiding physical problems from anyone and
everyone.  When I was in the 6th grade my voice started going hoarse.
At times it would totally go.  It did not happen very often and since I
talk very little so this was easily hid.   Now due to the fact that I
was in the hospital for 5 weeks and the doctors and nurses never caught
on I figured I had it made, and I did.  The symptoms went away for a
while and after graduation from high school they returned.  Mom heard me
go hoarse and right away had to go to the doctor.  A tumor was found on
the vocal cord.  It was a neurofibromatosis tumor.  I was sent to a
hospital at Ft. Gordon GA near Augusta.  The tumor was removed and I was
placed on voice rest for 2 weeks. This was a very hard job for me. The
left vocal cord is still paralyzed, but the right vocal cord compensates
for both.  Doctors who have checked this are amazed that I am able to
speak as well as I do.

As most of you know I took care of my mom for many years.  She and I
were the best of buddies and we could talk about anything. We also got
into a lot of trouble together…hitting the sales at the malls.  She went
into the hospital in November of 1996 for a biopsy.  She crashed on the
table and was placed on a vent.  The surgeon told us she would not make
it through the night.  I stayed at the hospital that night.  Deep down I
had a feeling she would make it through the night.  Her pressure came up
a little – mainly through medication.  They were surprised that she made
it that night.  After a couple of days one of the nurses made a comment
that she was a strong lady and was really fighting to stay alive.  I was
allowed to stay by her side since they saw she was content with it, even
though she was sedated.  On day six I knew deep down this was it and
started carrying my food stash out to the car.  That night I was allowed
to stay by her side.  She fought so hard, but her pressure was slowly
falling.  I fell asleep in the chair by her side.  Waking up around
midnight I told the nurses on duty that she knew I was at her side and
was fighting for me.  I rubbed her hand and whispered in her ear.  I
will be ok, do what ever you need to do.  Looked at the nurses and made
them promise they would come and get me before she died.  They came and
got me a little before 1 AM on Wednesday 27 November and let me in to
the ICU.  She died with me at her side.  This was day 7 post op and I
think she lived that long to help me.

Tony Edwards, Respiratory Therapist and very special friend to the
family told me I needed to get out of the house and do something and
encouraged me to come to the hospital and volunteer for a while.  Taking
him up on his offer really helped me, in more ways then one.

I was having major breathing problems.  OK I would stop breathing and
someone would have to do the himliate maneuver to restart it.  I refused
to go to the doctor mainly cause I was a chicken.  One day this happened
while I was on duty in the intensive care unit and just my luck Gary
Parker another respiratory therapist was on duty.  I gave the
international sign for choking and he jumped up and started giving me
the life saving hug.  After I started breathing and he found out I had
not choked on candy or anything,  I was threatened.  The nurse and Gary
made me promise to go to a doctor about this and not to put it off.  I
guess it was within the next few days that Dr. Robert Marcum came in to
see a couple of patients.  He was leaving and at the door I called to
him and asked where his office was located, that I needed to make an
appointment and see him.  He came back to the desk, sat down and asked
what my problem was.  After explaining he said that is not normal, to
which I replied but Dr. Marcum I ain’t normal.  He grinned and said I
know but make an appointment as soon as you can and come to the office.

At the appointment several tests were scheduled including a CT, that
showed some stuff that needed to be looked at closer.  So and MRI was
done and a tumor was found at the C1-C2 area on the spine with part of
it going into the medulla of the brain stem.  My thyroid was also found
to have several nodules one it.  In April of ’98 my thyroid was removed
and then in August I was sent to a neurosurgeon who removed the tumor.
Prior to surgery he held up his hands about 20 inches apart and said
this is the risk if you don’t have surgery and then moved them about 8
inches apart and said this is if you do. I was really scared but didn’t
want to admit it.  But when I went into the secretary’s office a New
Testament was lying on the desk and I felt a total calm about it all.  I
did really well, spending one night in the Neuro ICU and then being
moved to a room.  Surgery was done on Tuesday morning and I was
discharged on Friday morning.  The thing that bothered me most is the
vice grip that my head was placed in during surgery.  It made a few sore
places on my head.  Out of the deal I got a really cool haircut, the
back of my head had to be shaved.  If someone asked me what happened I
turned my head and said the doctor gave me a new haircut.  Then I would
tell them what had happened.

I think that if mom had not of made it through the night I would never
had started volunteering at the hospital.  Which in turned aquatinted me
with doctors and nurses who made me seek medical attention. Which saved
my life.  I knew it was necessary but let’s face it; I am not one who
likes to go to a doctor.

In January 2000 I found it necessary to have one more surgery.  A large
tumor was in the left armpit and was starting to cause pain.  It was
decided that this needed to be removed and soon.  Due to the fact that
skin grafts would be needed and my skin could not be used.  It contains
the same tumor tissue that was being removed and would be defeating the
purpose and could not be used.  So approval to use Apligraf was obtained
and a representative from the company came to observe the surgery. This
was a big deal for the company and they followed up the progress.  I
received 5 graphs in the OR. My arm was immobilized for 2 weeks so my
tissue could start to take hold of  the grafts.  Later a few other
grafts were place to aid in healing.

To end the story I am doing fine, so is the arm.  I had some great
doctors but the best was my Physician Jesus.  Keep smiling and have a
happy time knowing the Lord.

Debbie Mae
(go-for)--(2002)
Return to Home Page