In 2005 at age 70, Mary Miller of Doylestown, Pennsylvania was diagnosed with MDS. Now 77, she says of her diagnosis, “My initial reaction was that I had never heard of it, so I looked it up online and scared myself half to death!”
Like many MDS patients, the first indication there may be a problem came from experiencing significant fatigue. “I was tired and cold all the time, and my hair began falling out. At first, my primary care physician thought the problem was low thyroid and prescribed medication. However, additional blood work showed an anemia that could not be treated with B-12 or iron, and I was referred to an oncologist/hematologist.”
When a definitive diagnosis of MDS was made, her hematologist wanted to adopt an approach of “watchful waiting” (also known as “watch and wait”). Watch-and-wait means the patient is in the low-risk category and does not require transfusions. No treatments are given, but blood counts are carefully monitored for further changes indicating medical intervention is now required.
Mary wanted to try a more proactive approach in maintaining and supporting her overall health with non-medical regimens and programs to be used in a preventive manner and hopefully improve her quality of life. Some were directed toward improving physical health while others were to help relieve the emotional stress that an MDS diagnosis brings. Mary knew that developing or existing underlying physical conditions could be complicating factors should she progress to needing supportive care or active treatment for MDS.
Getting started with a healthier lifestyle
Even prior to her first appointment with the hematologist, Mary decided to learn everything she could about her disease including research that was being conducted all over the country. Still experiencing significant fatigue, was there anything she could do now to help the quality of her life and what options might be available in the future—medical and non-medical?
“Online, I found two pilot studies at the University of Massachusetts Medical Center involving natural substances that were suggested to be better tolerated by older patients (that’s me!). I found this interesting and took the abstracts of these research studies to my primary care physician as I thought I would like to try these if treatment were to begin. However, he suggested trying one or both of these protocols now used in a preventive approach. I agreed. This option made more sense to me than just waiting and doing nothing until my counts got worse. In addition, because natural substances were used, while they may not help, they could not hurt.”
The challenge was finding a physician in Philadelphia who could follow the research protocols which she was able to obtain from UMASS. Mary found a physician at Jefferson Hospital’s Integrative Medicine Department and prior to meeting with him, she made sure her hematologist knew about her idea to see if non-medical intervention could help her health during her watch-and-wait period.
During this time, Mary consulted with the director of integrative nutrition at Jefferson Hospital, who prescribed an anti-cancer diet.
“It’s very close to the Mediterranean diet of fish, chicken, beans, nuts, whole grains, lots of fresh vegetables and fruits—organic as much as possible--and lots of water. Dairy is limited, and sugar and processed and packaged foods are completely out.”
Stress continued to be an issue, and treatment-resistant borderline hypertension was giving a clear message. Mary was already exercising regularly at the gym, but a trainer suggested she substitute the treadmill with walking outside at a park with a beautiful lake near her home, which she describes as beneficial to reducing stress as it is to her heart. She also signed up for a Mindfulness-Based Stress Reduction Program at the Abramson Cancer Center, University of Pennsylvania to which she attributes a great improvement in her attitude about her condition.
“The worries that come with diagnosis of MDS can be overwhelming. I would become very anxious just before blood tests—how would my counts be and what would my doctors say? The stress reduction program taught me how to be less reactive to stressors and to accept things as they are rather than the way I want them to be. The latter is not resignation or giving up.
Rather, it is learning how to take one step at a time and to focus on the present moment as opposed to worries about a future that in reality is unknown and uncertain for all of us. Using the “mindfulness tools for living” I continue to learn at the Penn Program, helps me in my daily life in addition to coping with MDS.”
Emotional and spiritual support complements her efforts
Mary believes building a support system—having a strong community of support—is just as important as the steps she has taken in her initiative to do all she can for her physical health even while she is in an untreated “watch-and-wait” stage of MDS.
“I’m a clinical social worker and still work three days a week, so I understand from my professional background how important it is for patients with any serious chronic disease to have support from family, friends, co-workers, and other patients. However, this is not so easy especially as one of my friends explained ‘no one knows what this disease is which is one reason why patient/caregiver conferences are so beneficial.”
One of my doctors insisted I tell my children how serious an MDS diagnosis can be as he felt my trying to cope with MDS alone was contributing to my blood pressure issues. I was reluctant at first as I didn’t want to worry them, but it turned out to be one of the most helpful things I have done. We met with my primary care physician who explained MDS and answered all my children’s questions. We talked about where I am now, and my prognosis, and we agreed on future treatment options. Our honest and open discussion about MDS has helped me to be more honest and open about my disease with others.
Spirituality is an equally essential component of my “mind, body, spirit” approach to living with MDS. I have made a more active commitment, participation, and involvement in my faith community which has become a strong part of my support system. When asked to submit a photo, I chose one playing golf in Ireland July 2011; something I never would have dreamed possible. On a spiritual pilgrimage to the Celtic sacred places in Ireland, our amazing Irish driver/guide arranged for the three of us to play golf at a private club outside Dublin--something I would never have dreamed possible--and I learned the sacred is everywhere!”
Since Mary’s 2005 diagnosis, her red blood counts have improved, but her white counts have fluctuated. She has had several infections sometimes requiring more than one course of antibiotics, but no treatments for MDS. She continues to have blood tests and physician office visits every three months to monitor the MDS. Her physician charts her blood counts over time and goes over them with her during office visits. Some of Mary’s physicians are of the opinion that alternative and complementary approaches and lifestyle choices such as she has made will have no effect on the relative stability or progression of her MDS and thus make no difference. Some of Mary’s friends and family agree. About this, Mary states,
“I began this path October 2005, and I’m staying with it! However, I’m not saying the path I have chosen is right for everyone or has been easy. In fact, it’s been challenging and one with no guarantees. I am overwhelmingly grateful to the support network I have developed to help me hang in there and continue a ‘mind, body, spirit’ approach to living with MDS, as quality of life is paramount"