ROUND
1
NOTED IN 1997 ( original web page )
Welcome to the world of living with Non
Hodgkin's Lymphoma, or in short NHL.
By now you have had time to sit back and take everything in. A
little overwhelming isn't it ? That's why life from now on
certainly won't be boring for both patient and caregivers! If you're a rookie
(patient or
caregiver) you'll have to learn to thrive on this
type of diversity,
because life with Non Hodgkin's Lymphoma, brings new adventure on a
regular basis. If you're a veteran (patient or caregiver) you're probably almost
just as confused as the rook, but mellowed, and at least now you have the wisdom of
personal experiences to help you
make decisions.
The
bottom line is that
life
with Non Hodgkin's Lymphoma is what you make it !. Twenty years ago little was known about
the disease, but today's information oriented society has changed all
that
for both patient and medical team and the future
seems even more promising. Knowledge is the name of the
game, and being informed makes you more comfortable with the decisions
at hand. Procedures and statistics are all fine and dandy but there's
another side to the battle, a human side, one that helps
you better understand.
My name
is David
Perreault and I'm the compiler of this WEB PAGE a. collection of information obtained from
the Internet, and personal experiences. For 7 years
I have lived the life of today's
gunslinger, with a bounty on my head ( Recurrent
Low Grade Lymphoma ), knowing that more showdowns with the BIG
C were coming. 3
times along the way I have been forced to heal my wounds and regroup, living the life that
Recurrent Cancer represents --- shorter and shorter, good health
periods.
The
last fight saw me use one of
my
best weapons, a Peripheral Stem Cell
Transplant
in February of 1997. Since then the road has been bumpy and. challenging but once
again I am ready to regain my perch and live the life that a true
gunslinger
does, living life to it's fullest, while the chance is still there. I
have
no idea what the road holds ahead because there really is no history to
base decisions on when you're entering new territory, much like our
western
heroes. It has been 3 years since the transplant and I'm still
in
remission, thus at least relieving me of the recurrent
( keeps on coming back ),
handle
that I so despised.
What does the future hold? Only time will
tell. However
I can inform you about my
past Cancer experiences, and
future one's if
they develop. Keeping
my fingers crossed and touching a lot of wood..
ROUND NUMBER
ONE 1990 (
MASS CONFUSION !)
(
Treatment - Leukran, a
chemotherapy pill
.
ROUND NUMBER TWO 1994 ( WHAT'S GOING ON ? )
(
Treatment - Leukran2, a
chemotherapy pill )
.
ROUND NUMBER THREE 1995 CLINICAL
TRIAL
( THE WONDERS
OF TECHNOLOGY ! )
( Treatment - Monoclonal Antibodies
)
( Treatment - Local Radiation )
PERIPHERAL
STEM CELL TRANSPLANT.1997
( Treatment - Cisplatin
- Cytarabine,
chemotherapy drug IV's )
( Treatment - Harvesting Stem Cells )
( Treatment - Etoposide
- Melphalan,
chemotherapy drug IV's )
( Treatment - Total Body Irradiation )
( Engraftment
)
( Mucositis )
( Personal
Medicine )
( Post
Transplant )
I was
diagnosed with Low Grade Non Hodgkin's
Lymphoma in
early
1990. I like many others, had watched it grow for several months before
doing anything about it. At the time I was working in Toronto in
advertising,
after seven years of post secondary education, all at a young, now old
age,
of 29. Several years of long hours and plenty of stress had taken
its
toll and it was time for a major change.
Ironically
it was at my
first old timer hockey tournament, when I finally decided to do
something about the small growth in my groin. I was always athletic and
healthy and being sick, was all new to me. In fact I had been living in
Toronto for 7 years and still had no family doctor, or need for one.
Several referrals and
weeks later, I was finally at a specialist and receiving treatment. By
this time there was noticeable nodes in both groins, under the armpits,
in the neck area, and not to mentions
the internal nodes that I really didn't want to know about.
Even
if your not sick find a family doctor because
when
you need one it speeds up the process.
And
sometimes time is precious.
"Please make sure I am asleep, Doc!"
This was a
whole new world for me. Cat Scans, Ultrasounds, and another type of CBC
were overused vocabulary. At one time I was considering getting another
wallet for all the hospital cards. Did you register, did you do this,
did you do that ? I remember those first days were mass confusion.
I knew nothing about the disease and relied totally on what my doctors
were recommending. I was put on low doses of Leukran, a
chemotherapy pill, for two weeks to start with. Next came a six week
dose, at a level in accordance with the amount recommended for a person of my body size. I was lucky my
cancer was chemotherapy sensitive and went into remission. Another six
week cycle was done for safety's sake. With
my years of experience I have come to realize that I indeed have been a
fortunate one.
I continued to work during
this first ordeal with little side effects. I found that if I kept
something in my stomach I felt all right. One thing that I would do
differently is to make sure more family and friends were kept up to
date on my
status,.. right
from the start, to ward off hearsay. My parents called from Mattawa
one day and were coming to get me ( in Toronto ) because they had heard
that
I had lost forty pounds and was sick all the time from the chemo pills
I
was taking. It was then
that I assured them that I was telling them everything, and my word was the word. Today I still
find
myself
defending my word. Living with Cancer does that, everyone things you're
hiding
something from them..
That's the dark side of Cancer, the
uncertainty of
ignorance,
and
it's ominous presence in the faces of well wishers.
END OF ROUND NUMBER ONE
(A
BIG SIGH ) ..
With the
remission came a new outlook on life.
I began to appreciate the
little things, and I was no longer a procrastinator, and I was becoming
somewhat of a chance.taker.
I moved to Sudbury to become
closer to family and friends ( Mattawa ),
but also because the Northeastern Ontario Cancer Center was there. A new
job
( didn't come easy ) and
healthier lifestyle followed, with an emphasis on getting and staying
in shape. I worked up to a two an half hour cardio workout three times
a week ( my stress release ) and began to watch what I ate,
cutting off all fat and
increasing my veggie and fruit intake, but best of all I felt like I
was living again and even the simpler things in life weren't
taken for granted anymore.
I
guess the thing that amazes me the most about
that first battle was the size and quantity of visible nodes without
having
any associated difficulties, you'll learn later on why I say that. When
I look back now I realize that I was indeed fortunate to be treatment
sensitive to Leukeron, for it bought me time to grow up in
terms of dealing with NHL. Now that I think of it back in 1990
I wonder what my options would have been if the pills hadn't worked.
Don't even want to go there.
I still remember leaving the specialist's office having received the
good news that I was in complete remission, although at the
time I didn't even know what complete remission meant and
containing my excitement until I left the building. By the time I got
to the parking lot I could
contain myself no more and I did a jig of joy that brought chuckles
from
people near by. I remember sitting in the car thinking that my life had
to change and that I needed to do all the things I said I was going to
do
if I got better. Gone was the procrastinator.
