June 2, 2006 - Day 3 - Week 9 -
Mantle Cell Lymphoma Compatriot
One of the great gifts to us
all through life is family and friends opening doors
to new opportunities, relationships, or
experiences. Three weeks ago at the St. Matthew’s
Town Fair Harry McMahan suggested I call his
business associate at Merrill Lynch. He emailed me
his number, and opened the door to his friend Lee
who has been struggling with MCL – mantle cell
lymphoma for over two years.
We have chatted and though
separated by 3000 miles, he lives and works in New
York City, we are now blood brothers, of a type. I
share his story because he is blazing a trail I too
may follow one day. His words are already
revelatory for me, and contained within his journey
are perhaps pearls of wisdom for all of us.
Over two years ago his primary
physician, at his annual physical check up,
(learning #1 – have regular check-ups) noticed
irregularities in his white blood cell count. This
led to a diagnosis and his own personal quest to
find the best possible treatment available in the
United States. (learning #2 – listen to all
suggestions and find what works best for you) Since
there are only 3000 new MCL cases a year, he
assumed, and rightly so, that only a handful of
experts were available for consultation. In a 3
month learning process he visited MD Anderson Clinic
in Houston, Fred Hutchinson Clinic in Seattle and
the Sloan Kettering Clinic in New York and listened
most attentively to a Dr. Leanord. Lee discovered
that he could get the latest treatment at his local
hospital 5 blocks from his home in the City,
because the top fellows all consult with one
another, and he was pro-active about his own health.
After 6 rounds of chemo therapy
the MCL was arrested but his spleen took a dive and
he had to have it removed. He then went on a
regimen where rituxin (the key drug in my program)
was a part of a pill maintenance program. He did
not take my breath away with the next statement, but
close. “You know Peter, there is really no cure for
MCL, it keeps coming back,” or something to that
effect. He then went on to justify why he went into
experimental therapy trials. “The historic stuff
wasn’t lasting for me. MCL is a tough guy to beat.”
Lee, the first person I have
talked to with my specific challenge, and no wonder
with only 3000 new cases yearly, spread across the
country, sobered me up pretty quickly. When he went
on to talk about the mathematical norms of life
expectancy at around 3-5 years and that we are in
the frontier of treatment of this type of cancer, I
thought to myself all who travel the road with me
will be called upon for support. I am not hiding
and going down the path all by myself, that is for
sure.
Lee describes where he is today
as functioning on ‘automatic pilot’. “I do what the
doctors tell me, while continuing to learn as much
as I can,” he went on to say. (learning #3 –
partnership with doctor without abdicating our own
responsibility for our own well being is the right
choice).
On a personal note I inquired
about the impact of the treatments on his physical
well being. I told him I call it the yo-yo effect.
I said that I feel good one day, bad the next and
never really know what to expect from day to day.
He said that in his case by the 6th round
he had had enough. For two to three weeks following
treatment he was exhausted, had no interest in food,
and was tired of the whole ordeal. Period!
This made me pause again as
treatment #3 is in process. Then I thought: I bet
Lee was not supplementing his diet with seaweed,
miso soup, sea vegetables, and The Perfect Food –
the green drink made from wheat grass, spirilina,
and a variety of other healthy greens that tastes
like you are eating grass, unless mixed with
something sweet like carrot or beet juice.
Lee and I agreed to stay in
touch. We agreed to have lunch on Nantucket one
day. The food for that lunch will not be selected
from my current diet, that is for sure.
Back
to Week 9 |
