Due to the fact that I am a newcomer to
the world of non Hodgkin's Lymphoma, I have hesitated to talk about my
experience living with this disease. I have not endured the
painful bone marrow transplants, nor have I had my quality of life
destroyed for a time by chemo, my body has not had radiation burns and
I do not have to worry about what would happen to my children if I
should die since they are adults.
But, I got to thinking that my story is the story
of many of the people with non-Hodgkin's . . . we are a large group
who lurk out there in limbo. There is no cure for our disease and
there are very few approved non- toxic treatments available to us, so
we are on what is called "Watchful Waiting". This
means that we do nothing medically to prevent the cancer from growing
until it reaches the point that we are forced to treat. Many view
Watchful Waiting as the gold standard for treatment of non-Hodgkin's.
. . doesn't it seem barbaric in this day and age that the best we can
do is nothing?
Every three to six months, we are evaluated with
numerous blood tests and a CT or MRI to see if the cancer has
encroached to a point that requires treatment. We constantly worry
about our tumor burden becoming too great since that will affect how
well we respond to treatments. We agonize over choosing the
"wrong" first treatment which offers, at best, just a short
reprieve but can burn bridges to other treatments. We fear the B
symptoms, drenching night sweats, fever, loss of weight, and extreme
fatigue, because this will mean our disease has transformed to
aggressive lymphoma which requires toxic chemotherapy immediately.
But worst of all, we live each day with the knowledge that no matter
what we do, our life is going to be cut short.
There has been a lifeline thrown to us in the form
of low toxic personalized vaccines which have been shown to be
effective against lymphoma. Many think that they may be a cure for our
disease and if not a cure, they do offer long term remissions without
burning bridges to future treatments. The concept of "Watchful
Waiting" was born out of the belief that first you do no harm .
The Lymphoma Petition, which has been signed by thousands, was born
out of the belief that there is Hope.
Betty Walters: dx August, 2001, Low Grade Follicular non-Hodgkin's