Love, Olivia

Getting a diagnosis of a deadly disease is like being hit by a tractor trailer truck. How we first react to this diagnosis takes us down individual paths. How we come to grips with this diagnosis often involves the support of others. How we get through treatment with this diagnosis – it takes a village. This is the story of my village. In the fall of 2006, I had severe pain in the back and legs. I started with my family physician in upstate New York, who has known me for many years. Through 2007, we ran through tests after tests, scans after scans. Eventually some blood tests results gave her cause for concern, and she referred me to a hematologist. The hematologist ran through more tests, the results of which determined I had MGUS. MGUS is a condition to be monitored that may lead to cancer. The only problem is that MGUS is typically asymptomatic, which could not explain the worsening pain in my leg and foot. I went for a second opinion in New York city at Weill-Cornell in December of 2008. After seeing 2 dermatologists, 1 chiropractor, 2 massage therapists, 2 podiatrists, 1 hematologist, 1 rheumatologist, 2 neurologists, 1 nephrologist, 1 blood pathologist, and 1 neurosurgeon, the second hematologist arrived at the diagnosis of AL amyloidosis. This was the equivalent of getting a death verdict. What I did not know was that the second hematologist, Dr. Niesvizky, is one of the leading experts in multiple myeloma. I am still not sure what prompted him to rerun a particular test. This was a test that had already been performed in upstate New York. Was it experience or intuition or genius? The result indicated I have multiple myeloma and secondary amyloidosis. The treatment was a stem cell transplant. This is equivalent to getting parole. By late spring of 2009, I had my diagnosis. Two weeks later, I went through a stem cell transplant. I had the absolute best care between Dr. Ruben Niesvizky, Dr. Tomer Mark, and their team. The hospital staff at the stem cell unit at New York Presbyterian hospital, from the cleaning lady to the nurses, to the attending physicians – all of them shall remain in my heart forever. They are all part of my village. Hope Lodge, in Manhattan, provided my first glimpse into the larger village. Being with other cancer patients made me realize that we can cope for decades with deadly cancers, beating all the odds, supporting each other with hope and love. My village includes the community of incredible friends who circled around my family like protective angels, taking my two young girls through an incredible spring and summer. My husband, Wai, rose to the occasion and was quietly and gently supportive. My brother Nicky, who lives in Nairobi, Kenya, came and played with the kids for 2 weeks. Friends called, sent cards, and Emails. My faith grew in leaps and bounds, not because of the disease, but in spite of it. During this period, the economy crashed and burned. The area I live in has one major employer, and one out of four employees were laid off during this time. A retirement package became available, and we were not able to take it due to a future lapse in health insurance coverage. But my village came through. Our family and friends showered us with care and love. There is always going to be someone who hurts you badly when you are down. But then there are those who lift you up. I had never asked for help for ourselves before, and I took foolish pride in providing it to others instead. It was really hard to ask for help. But we did. Help came pouring in - overwhelming help, selfless help, loving help.– an inundation of care and concern. After the stem cell transplant, life started up very slowly, in bits and pieces, between naps and long periods of rest and sleep. Our village was there for us. It sustained us. It helped me recover physically, but it also helped me grow mentally and spiritually. My village has a name. I dub it Hope. Will you please come join my village? Love, Olivia