BY PHYLLIS M.
A Specialist's Specialist, that's what I needed. I'm Me- a wife, mother, licensed Allied Health professional, daughter, sister, friend, and many other things (all hopefully with a positive legacy). I have spent over 30 years in a gratifying professional occupation primarily in pediatrics. I am incredibly blessed to be given a wonderful family and the gift of working with others while seeing the humanity of people.
It's all a process, embracing a different perspective of living life to its fullest. I have tried to facilitate opportunities and advocate for others to find their "voice" during challenging life experiences. Now my perspective of living life to the fullest had a compelling urgency of needing help from someone else.
I'm not giving a long disquisition, but briefly I found out during a routine physical that my lab work was off, ah, nothing to be concerned about maybe fatigue, stress from overextending myself, or menopause, but no… it was multiple myeloma. So here I am looking to now change what sounded like dire limitations, of maybe six months (as five out six of my family heard ) to potential…
I tried to educate myself learning from my family, primary care physician, the community oncologist, myeloma specialists, support groups, and I read, read, read. I think of myself as having an inner strength of spirit and intuition that I try to be mindful of. I have tried to learn from those that have walked before me. I found overwhelming frustrations ( let's start with this disease), new experiences (myeloma, a bone biopsy aspiration), and laughter along the way (I wear my lucky pineapple underwear so I can tell myself the bone biopsy doesn't hurt but let's be real). Or when I was told the date of a stem cell transplant, I piped up that I will miss the St. Patrick's Day Pub Crawl. Yes, it's a lonely walk at times, but I have found so many people some that I never would have met, that now stand beside me to support and encourage me. I'm learning to shift my perspective from how to help others, to all about me right now. I needed someone to hear me, try to help me, and I needed someone to design a measurable intervention with some hope thrown in.
I needed a myeloma specialist's specialist. Someone that was extremely well versed in high risk myeloma who thought out of the box. And I needed someone that had a similar perspective of hope, balancing and living life, and still try to accomplish moving forward. After meeting a few specialists I met Dr. G. Koehne who is part of a team of myeloma specialists at Memorial Sloan-Kettering. His patient load is comprised of patients that have found him, or that have been sent to him from other myeloma specialists for their high risk needs. In my terms, he is that Specialist's Specialist in myeloma. I was also slightly unique. I had not received treatment yet, and I was still in good shape (medical stability) though I have this aggressive diagnosis. Fortunately Dr. Koehne is interested in working with people similar to me. I realized my perspective is helping others, and now if I can help someone else find information, then I will have been given a gift that someone gave me: renewed hope to continue living life to the fullest. I write this as a reminder to myself to enjoy life.