Watertown, MA; firstname.lastname@example.org
1965 / Class of '96 / Type: IgG/ use of Meditation and Chinese Martial Arts / Last Update: 1/02
I was diagnosed in January of 1996 after a random blood test picked up an
elevated protein. After a few retests, it was determined, shockingly to me, that
I had smoldering IgG Myeloma with an initial level of 4400. I was 31 years old
and had just moved to the Boston area to take a lectureship at Harvard.
It was quickly decided, after a consultation with Dr. Robert Schlossman at
the Dana-Farber Cancer Institute, that I was not "yet" ready for
therapy--no bony involvement. But Schlossman suggested that an allogeneic
transplant would be appropriate sometime between 6 months to 4 years hence.
After that, I entered a state of “watchful waiting” – in which I was to
receive no active therapy until the disease progressed. Left to my own devices,
I very doggedly pursued a number of alternative remedies – the most important
being private training in meditation and martial arts (Tai Chi, qigong) with a
martial arts teacher named Ramel Rones here in Boston (his teacher is Dr. Yang
Jwing-Ming, a well known author on the Chinese martial arts). This training has
helped me stay sane; it has made me more focused. I feel much stronger, both
mentally and physically, than I did before my diagnosis. And, I believe, it kept
me from needing active therapy for much longer than my initial consultations
with Dr. Schlossman and others led me to expect.
Things stayed pretty stable for the first four and half years. In late 2000,
however, my IGG protein began to rise each month and my hematocrit began to
drop. Deciding to begin treatment was very difficult because I had taken a very
conservative approach to the disease—I wanted to smolder as long as possible.
I didn’t want to “waste” a bullet if I didn’t have to. And, I worried
that any treatment I might choose today could foreclose a future option--
especially as there are several promising remedies that will be available in
just a few years.
I finally did start on pulsed Dexamethasone in June 2001. Since that time my
protein has slowly been “ramping” down. I will continue with pulsed
treatments, perhaps adding in some thalidomide, in order to get the protein
level down to a normal level. When that happens my oncologist and I (along with
my husband and family) will talk about what to do next.
Weirdly enough, the disease has been a blessing. It's forced me to confront
fear, death and to feel and express love (and fear and sadness) much more than I
had ever done before. It has also helped me to find a new career which I really
enjoy. I've become an alternative medicine researcher. I began by helping my
martial arts teacher and researchers at the Dana-Farber Cancer Institute at
Harvard design and launch a protocol testing the effects of qigong on Natural
Killer Cell Activity of former cancer patients (no results yet. Still in the
pilot stage). I am now initiating some of my own research projects—for
instance, investigating how a patient’s understanding of a therapy (like
acupuncture, for example) can affect the type of result that he or she gets from
that therapy. I am especially interested in 1) how someone’s mental
understanding of their physical condition can affect their physical experience
of their own body, and, 2) how certain physical sensations (elicited by
meditation, martial arts or acupuncture, for example) can change a person’s
understanding of their physical disease or condition.
So much has changed in the world of Myeloma since I was diagnosed—so many
new treatments, so much more hope. To make sense of all of this, I have
consulted with myeloma specialists to help me and my oncologist form a treatment
plan. The two whom I have turned to, Drs. Brian Durie and Kenneth Anderson, have
been both very helpful. Of Dr. Durie, I found there is something about the way
he listens to what you have to say and tries to make sense of it -- rather than
fitting it into a cookbook notion of the disease -- that is very calming and
very sane (in particular, immediately following diagnosis, he was decisive in
steering me away from a consideration of the older style myeloablative
allogeneic transplant). And, of course, here in Boston, Dr. Anderson is an
incredible researcher and clinician. He has consulted with us at critical
moments;at one point last year, when quick decisions had to made, he was wise
and very helpful.
Right now, my major life goal is to work on my most important relationships
-- my husband and my sisters and parents and extended family, and close friends
-- and to continue to heal from the six year experience of living in close
proximity to this entity. While the whole thing has been very strange, in the
end I feel, at some deep level, that everything will be all right.