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Dedicated in loving memory of Lori Anne Krull
I always used to think that cancer was something that would strike a neighbor
or someone else, anybody but me, besides that it only hit older people not a
seventeen year old
Well I was wrong
.. The fifth day of my senior year in
high school (August 18th 1995). I had been having extremely severe headaches
all week. On that infamous Friday after several days of nagging by my mom she
finally convinced me to go to the doctor after I started to get a sore throat.
My mother met me at the doctors office that day after school. To my surprise
we didnt have to wait very long in the waiting room. They led us down the hallway
into a small cubical they call an exam room, with the usual stuff sink, paper
covered table, and a desk with chairs. The doctor came in soon there after,
and did his usual routine of poking and prodding, big breath, listen here, listen
there (That stethoscope is always so cold). Then he sent me to the lab. In the
lab they took some blood and a lot of X-rays. So needless to say I was glowing
on the way back to the cubicle. Well once back in the familiar little cubical
we sat down and waited, and waited and then my dad arrived, so he joined us
in waiting, and waiting, and then we waited some more. Well finally the doctor
came back into the room. When he came in the look on his face was grim. That
sent my mind into overdrive. I expected him to tell me that I had Mono or Pneumonia
or something that only required a shot and I was done with it, but he took my
hand, and told us that he wanted me at All Childrens Hospital that night, and
that he thought I might have Leukemia. I felt like the doctor had just signed
my death certificate. I cant describe the feeling I felt when he told me his
diagnosis, except for that it was a horrible feeling. There was going to be
an oncologist waiting for me when I got there. We left the building, we had
come in three cars, and I did not feel up to driving home, so we left one car
there and took the other two home. We threw some clothes in a bag and we started
on our journey to St. Petersburg. When we were about 3 miles from home the temperature
gauge in the car went al the way to hot, but thankfully we were only a mile
away from the doctors office where we had left the one car. We went to the
doctors office switched our stuff into the other car and took off. We called
a friend to get our car for us. I cried all the way to the hospital. There were
so many thoughts going through my head. I was so scared. I cant describe how
I was feeling, I felt like life was so unfair. I kept asking myself why, why
me, what did I ever do to deserve dying at the age of seventeen, Why, Why me.
I couldnt understand why, or what I did. I mean how does God decide who is
going to live or die, I just couldnt understand. Even though I know that there
is no answer, I still ask myself why, why me. When we arrived at All Childrens
Dr. Rossbach was waiting on me. They asked a lot of questions and at 10 oclock
they took me to a sterile treatment room to do a bone marrow aspirate. This
procedure consists of me (the patient) getting to lay down on your stomach.
For about an hour you have had EMLA cream on your skin over the spot over the
pelvic bone where they are going to poke you. (EMLA cream is an ointment that
helps to dull the initial pain from the needle) They then inject lidocane into
the bone and let it set for a minute to take effect. By now half of your pelvis
is completely numb to pain, this is a good thing because now they have to push
a needle through the bone in to the center. Believe it or not you dont feel
much pain at all, all there is is pressure. At 11 oclock that night they confirmed
that I have Acute Lymphoblastic Leukemia. I had been crying off and on (more
on than off) for about 7 or 8 hours straight. Right away they told me that I
would have to get a central line, more commonly referred to as a mediport. This
is a surgical implant that is put beneath the skin in the left side of my upper
chest. They stick a needle through the skin and into the device and leave it
in, this replaces the use of a peripheral IV (for the most part anyway). This
scared me at first, I didnt want the scar and the thought of having surgery
scared me, but when they said they had to change the peripheral IVs every other
day, and after Willie, another young man about my age who also had cancer, had
come by my room and showed me his mediport and explained how he felt about the
procedure, I decided that it was a good idea. They finally got me settled down,
and I went to sleep. The next day I met the oncology wings day nurses. When
I got up they started explaining things to me, mostly telling me about what
was yet to come. They always answered any questions I had. They gave us more
literature than we could stand about Cancer, Leukemia and Chemotherapy. They
also helped me and my family to stay somewhat calm and to deal with what we
were going through. The nurses introduced me to other patients on the floor
who had been through the same initial shock, including a very special young
lady Lori. They introduced me to a couple of people who had leukemia also, but
nobody there had the exact same type of leukemia I do. I learned more in that
first week than I think I have ever learned in any school. They told me about
all the chemotherapy drugs, how they worked, how they were administered and
what some of the side effects of these drugs were. Hearing and reading about
the side effects scared me also, I knew that my hair was going to fall out,
I didnt know how that was going to work out, but it didnt turn out to bad.
Thinking about the other side effects like severe nausea, mood swings, exhaustion
and all the pain that was yet to come scared me. I didnt know what to think,
I knew there wasnt an answer to my question, why me, but I couldnt keep myself
from asking that question. The staff at All Childrens Hospital helped me to
accept what had happened. I was still confused, I didnt know how this was going
to affect my future plans. I didnt know what was I going to be able to do while
I was on treatment and so on. The nurses and doctors were so very supportive.
The nurses on that unit are the best and most caring people I have ever met.
One nurse, Nurse Nancy, played a practical joke on me, and shot me with water,
that was her first mistake, and so to quote a famous rabbit "of course you know
..This
means WAR," and so it began. After a while though the other nurses got dragged
into this WAR. Monday morning the doctors took another sample of my bone marrow
because the sample taken Friday was used to make a quick diagnosis, so they
needed another sample to do extensive testing on and to send out to the Duke
Medical Center, and to Montana for chromosome testing. They also took a sample
of my spinal fluid in a procedure known as a Lumbar puncture (a spinal tap).
To do this they had me roll up into a ball. Then they stick a very long needle
in my back and between the vertebrae and into the spinal column. Before removing
the needle they take a sample of fluid for testing, and then inject a special
mixture of chemo in to my spine. They started my chemotherapy on Monday the
21st of August. There are to be three phases of my chemo. The first phase is
called Induction. It was to last 28 days, and we had to drive to St. Petersburg
twice a week for treatment, but I spent the majority of those 28 days already
there as an inpatient at the hospital that month for various reasons, two infections,
and a reaction to a flu shot. I had been having severe headaches constantly,
they got so bad that I was bedridden with them. If I would even try to stand
up the pain would become unbearable and I would just fall back down in bed again.
They performed an MRI of my head to see if there was anything wrong ( really
I think that they just wanted to see if all my marbles were there ), and they
said everything was fine. The doctors then had a neurologist examine me and
he diagnosed me with Migraine headaches, on top of all my other diagnosiss.
In the induction phase I needed a lot of blood transfusions because the chemo
kills both the good and bad blood cells. At first when they gave me the blood
transfusions through an IV in the arm, the cold blood would cause my arm to
hurt very severely from the inside out, and on top of that just the idea of
getting blood that came from another person made me sick, and so I could not
stand to look at the bag of blood hanging on my IV pole. After a while I got
used to seeing the blood on my pole, and it didnt bother me psychologically
anymore, but when I got a bag of Rh negative blood it would make me queasy.
During the first phase I was on several different types of chemo, and a steroid
called Prednisone. Prednisone is the drug that actually puts the cancer into
remission. Remission is a state where there is no visible sign of cancer. Prednisone,
being a steroid, has some side effects, like retaining water, weird cravings
for food, and all you want to do is eat, as my parents said I was like a pregnant
woman with all my food cravings and eating. The first of the chemos they gave
me was daunorubicin this drug is dangerous if it gets out of the vein, and while
you are getting this drug a nurse will be keeping close tabs on you. This drugs
side effects include the usual nausea and it will cause your urine to be red.
Second was vincristine, this drug causes potentially painful jaw pain. Last
drug of induction was PEG asparaginase. This drug is given in a legshot (I had
to get one in each leg because of my size). When you get this drug you will
have an hour long pow-wow with your nurse because they have to be right by your
bedside with emergency meds because of the high rate of allergic reactions to
this drug. During this phase my ANC (ANC, Absolute Neutrophic Count, is a numeric
value of your immune systems ability to fight infection based on the white
blood cell counts and differential) was at about zero the whole time. With a
low ANC I couldnt go to school, or even out in public because there was to
great a risk that I could get an infection. If I did get infected I would have
no immune system to fight it, and it could potentially cause death. My parents
had to get a full medical history from everyone who visited me to make sure
they had not been exposed to anything, even a simple cold. Whenever I show any
symptoms of anything I had to go to the hospital for at least three days while
they run blood cultures. If anything grows in the culture then I got at least
a two week stay at the Hotel de la All Childrens. I did not like being in the
hospital, but I made the best of it. I went to Loris room a lot to talk with
her, or I would be setting up some kind of a special surprise for some poor
unsuspecting nurse. I would also go to the playroom, and play with all the little
kids who were also in the hospital. These kids are remarkable, they have so
much energy. You would see a kid go flying by the door on a plastic tractor,
and right behind them would be a panting and tired parent pushing their IV pole
for them. The child life department had volunteers and staff at the playroom
to keep tabs on the kids while they did arts, crafts, played games, watched
movies or playing Sega or Nintendo. For the kids who couldnt leave their room
they had VCRs and Nintendos on carts so they can be wheeled into the kids room.
The child life department made every effort to get the children out of bed and
interacting with everybody else. Immediately after the end of the first phase
of chemo they performed another bone marrow aspirate and the results of that
test determine which protocol I would be on for the second and third phase of
my chemotherapy treatment. I was still surprised that I had hair left, I figured
it would have been gone by now. My hair surprised a lot of people by hanging
on so long. The second phase of chemo called consolidation consists of a series
of hospital stays in a cycle. The first week I would go in for three days and
for the first couple of hours they pre-hydrate me with IV fluids until I can
pass a special urine test. Then when I pass they would start me on a solid 24
hours of constant flow IV chemo using a type of chemo known as methotrexate.
After the 24 hours of solid methotrexate they hang a 6 hour long bag of IV 6-MP
(another type of chemo) then they have to give me post hydration, which is the
same as pre-hydration, until the level of chemo in my blood is back below the
toxic level. Then when my level is down I get to go home. Usually it would take
from Monday morning to early Thursday morning for all the chemo to be infused,
and for my toxicity level to come down to a safe level. Then on the following
Monday, week 2 of the cycle, I had to go over to the clinic for a half a day
or so depending on whether or not I needed a blood or platelet transfusion.
Then the third week after the start of the cycle I go back into the hospital
for four days to receive a drug called Ara-C. This drug is given for a solid
72 hours. Mixed in during this 72 hours are several drugs that take anywhere
from 15 to 30 minutes to be infused. After the infusing is complete, I can go
home immediately WhoooHooo
Then the following Monday, week 4 of the cycle,
I had to go to clinic for blood work, and some more chemo. Then I get a week
of rest and relaxation, week 5, all I had to do was go to a local Lakeland doctor
to have a CBC (Complete Blood Count)with a differential run and the results
were then faxed to my oncologist in St. Petersburg. After that wonderful week
the cycle starts over. (YUCK) Mixed in there about were spinal taps, and spinal
chemo. I dont like spinals because they set my migraines off. This cycle of
visits lasted for 6 months. After a cycle or two my hair finally fell out, and
then I truly blended in (well on Two Southwest anyway) About halfway through
the second phase I got an infection in my mediport and was given a two week
sentence at the beautiful, charming, and luxurious Plaza De All Childrens (boy
was that a bunch of hooey). The stay wasnt bad since I could go out on 6 hour
passes. My friend and cohort Willie was also an inmate there at the same time,
so we ran a muck giving the nurses of Two Southwest a lot of trouble to put
it mildly. Finally I am getting into the final stage of chemo, the Maintenance
phase. This is the final phase, but it lasts two years. Maintenance is a lot
less intensive than either of the first two phases. I go to St. Petersburg every
Monday for blood work and a shot of methotrexate in the leg, and every night
I have to take an Oral form of a chemo drug called 6-MP. The chemo is not intensive
enough to make my hair fall out. But I got used to being bald, so I am keeping
it short so I dont have to worry about my part all the time. Every 5 weeks
I have to have a spinal tap, but I get Happy Juice so I stay relaxed throughout
the procedure. I also have Emla cream to dull the pain from the needle prick.
Now it is getting down to the nitty gritty I havent had to be hospitalized
much throughout the maintenance phase but, I have gotten sick a lot, and am
constantly fatigued. I have less than 10 weeks left and am so looking forward
to March 24th when I go in for my final tests and to finish it all. It has been
a long 2½ years and I cannot wait to get off the drugs and go on with my life
and to marry the girl of my dreams whom I met on AOL. She has been there for
me in so many ways over the course of this treatment..I could never imagine
life without her and I never will! I love her!! I have managed to keep in touch
with all the nurses and the other patients with whom I went through this ordeal
with I go back to the hospital often just to visit and to see if I can help
counsel new patients. Once again I cannot wait to get off chemo it has been
a long ordeal but I hafta say if I had the the choice of having cancer and not
having it in 1995 knowing what I do now I would have chosen to have it......because
without it I would not know my fiancé, and I would not have met all the
wonderful people I have met. I hope you have enjoyed reading this and if you
have any comments please feel free to e-mail then to me...thanks
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