MY
NHL STORY
David
Perreault - 15 year, 3 remission survivor of
Low Grade, Follicular, Small Cleaved, NHL. First noticed node
1989 at age of 29; diagnosed 1990 remission from
Leukeron pill; recurrence 1993 remission from Leukeron pill; came back
in 1994 bought time; 1996 phase 3 clinical trial with monoclonal
antibodies; 1997 Peripheral Stem Cell Transplant - Etoposide, total
body radiation; Remission since :) Yahoo!
"NHL Playing In The
Wrong League" was created with NHL patients in mind but is proving to be a valuable source for
spouses, concerned loved ones' and to all present and future caregivers. The need to understand the human
side of dealing with one of mans' greatest fears is sometimes a loved
ones' only hope at control because:
KNOWLEDGE
HELPS to FIGHT OFF
INSECURITIES.
This
will not be a site with direct links to "the
now" (clinical
trials, new drugs etc..), but rather focus on "the how"
(humanistic aspects of a lengthy battle with NHL). You
won't find the latest in the wonders of the new technogies, but rather
the feelings associated with reaching long term goals and growing out
of pet peeves
like "you're
so young". My latest NHL pet peave is that I'm still usually the
youngest person at the cancer center after 15 years. In some places it
may be too real, but I'd rather be honest than to try to paint too
pretty a picture. A lot of people
have told me that I deal with my NHL, not suffer from it.
Recently I 've been
battling again (pulmonary embolus in lung /Aug 04
+ Malignant Melonoma Oct /04) after a 7 year period of good health
following my stem cell transplant. Physically I'm having a harder
time to recover this time (last time a node caused spinal damage), but
overall things are somewhat back to as normal as life with NHL
gets. The up and downs and the asociated feelings. The plusses
and the minusses. The divine knowledge that edge walking brings, like
simple life satisfaction.
All of us have
different levels, needs and wants to understanding, take
different paths to understanding and this fuels our
thirst for knowledge. Fifteen years into my NHL ordeal my main health
related concerns are the complications from previous treatments, not
the threat of NHL returning. The addition of a new type of cancer to
worry about, accompanied by the routine of blood monitoring have
brought the reality of "downtime" once more to the forefront and
another reason to update the web page.
