Watertown, MA; email@example.com
1964 / Class of '96 / Type: IgG / Meditation and Chinese martial arts / Updated: 1/07
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.
April, 2004: I continue to be surprised and grateful as my life continues. The treatment regimen described above of pulses of Dexamethasone along with 150 mg of thalidomide lasted in all for about 2 years. My doctor and I found that I have a very "sluggish" Myeloma that resembles, in many respects, indolent Myeloma. My IgG drifted down from 7100 to 2000 following a very gentle, stop and start pattern all the way down. Along the way I experienced a number of treatment-related side effects, the worst of which were weight gain (30 pounds) and hypertension (I should note that I never experienced any problem with neuropathy although I did notice very subtle changes in sensation in my hands and feet)
Eventually, last September, I decided to take a break from treatment. At first the IgG reacted by bobbing up by nearly a thousand points over 4 months. Since then, however, the IgG seems to have stabilized. Since stopping treatment, I've lost 30 pounds and experience much more energy during the day. I am ready, however, to go back on treatment at a moment's notice should the Myeloma begin to react aggressively -- and I'm relatively confident that the treatment should work to bring things back under control (I also sleep better at night because I know I have so many remaining "bullets" in my belt, including Velcade).
The things that challenge me the most, ironically, are the issues that troubled me before I got the disease--including new surges of anxiety about work, money, and the state of repair of my house, an aged fixer-upper. One of the most pleasurable challenges I face is that of managing a demanding workload as a full-time researcher at Harvard Medical School investigating possible mechanisms underlying alternative therapies such as Qigong, which I continue to practice daily for 2-2.5 hours, and acupuncture. I am also part of a group that is examining closely what it is like to interact with and receive care from a holistic practitioner such as an acupuncturist. I am pursuing two other initiatives that may be of interest: 1. I am looking at how the brain responds to touch to see whether there are specific therapeutic pathways involving touch and bodily feeling that may affect our mood, immune systems and pain networks. 2. I continue to work with my Qigong teacher, Ramel Rones, investigating Qigong as a treatment for cancer. We are very excited about a pilot study that we have helped plan that will look at whether Qigong can help people with advanced cancer by improving their mood, pain, and fatigue.
It is hard to believe that I was diagnosed with Myeloma almost 8.5 years ago. I never thought I would last this long. In addition to the Qigong, I think that all of the support I have received from my husband, family, friends, my oncologists and nurse practitioners, and other healers has made so much of difference. Now having been given this time, I want to if, without draining myself in the process, I can take some of that caring and direct it outward in my life and my work and make a difference to people in the same way that people have been so important to me.
January 2007: I am still alive. And doing well, mostly continuing to avoid medical therapies other than occasional (several times a year) use of bisphosphonates. I remain committed to allowing my disease to "smolder" at a low fairly stable level, using therapies occasionally to knock the IgG level down. Since I was diagnosed in January 1996, I've had two episodes of active therapy. In the first, my doctor and I settled on a combo of Dex and thalidomide which worked very very slowly to bring down the IgG from 7100 to 1500. This course lasted a little more than two years. I then smoldered again for another two years until, in the fall of 2005, I undertook a short course of Velcade (with a little Dexamethasone to give it a kick). My doctor and I decided to unleash the Velcade because my IgG was once again climbing (to around 3800). I finished the Velcade in March 2006 and since then have been on a nice level plateau (IgG around 2200 but seemingly rock steady) with no Myeloma related bone involvement.
My approach appears, perhaps at first glance, unconventional. It was not my doctor's choice for me to "hang out" with low level disease, instead of going for a nearly complete-remission+stem cell transplant (SCT). My decision comes from the fact that I have felt, since very early days, shortly after my diagnosis, that my immune system had more competence than it was initially given credit for. I just felt, on some gut level, that my system had some remaining capacity to cope with and meet the disease. And I think that capacity has been borne out. I have worked full time since my diagnosis and at some points have even felt as if I am flourishing. Whether I am self-delusional or not, is not for me to say.
I continue to believe, and my doctor now gives some credence to my view, that my successful Myeloma history may be due in part to the Chinese qi-based meditative exercises that I do every evening in which I stretch and "open" my body and build an internal feeling of stability and vitality. I know the meditative exercises have kept me sane, made me wiser and have also given me the basis for a new career investigating the effects of meditation and other therapies on the brain and its maps of bodily feelings. Over the next few years, I hope to make my research relevant to cancer patients and others with serious health conditions looking for ways to open to the possibility of healing. We seem to be on the cusp of discovering so much about health and about serious illness. Myeloma treatment has changed radically for the better since I was diagnosed. I continue to hope and pray for the future, for all of us, with (and without) Myeloma. And I try to live with and relax into the uncertainty in which I and so many of us (really, all of us as humans) have to make our home. I could say so much more about the spirituality that has grown in me in relation this last point but will stop here. Thank you for this opportunity to continue to share my story.
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