By Barbara Falkowitz
my husband, Phil, was diagnosed with multiple myeloma (MM) 25 years ago, I was 43 and we had a 14 yr old and 9 yr old twins. I was juggling working in an accounting office, homework, after-school activities of three kids, along with household chores. Suddenly, I had to add researching treatment options, back surgeries, stem cell transplant, rehabilitation, “nurse” on call, and manage the emotions from the kids and Phil. I found myself handling all of this without a thought of whether I could deal with it. The ability to adapt at a moment’s notice was a survival tool.
Organization As Life Blood
I found that organization was an important tool for managing my caregiving and myself. I believe if you can be aware that your emotional mind might be taking over, you can choose to let your rational thinking mind predominate. I had been able to keep many things in my head but I learned to rely on notes that I scribbled down when a thought came to mind. I also found that starting a task when it comes up and organizing my calendar relieves anxiety for me.
When faced with change that I didn’t count on, I learned to take a deep breath, relax my shoulders and think about how to achieve the new goal set before me. If plan A doesn’t work, there is plan B, C, or D if needed. We had family meetings with the kids and honest discussions about how we all had to be flexible with our desires and plans. MM can lead to a loss of lifestyle previously coveted. Embracing change can lead to many new avenues you never thought about. When Phil lost his physical sense of self, we needed to find other things in our lives to give it meaning. We couldn’t go bike riding as a family, but we could still go to the beach or a picnic. We also tried family therapy which didn’t end up as planned, but we laugh about it now! I really earned my nickname “the rock”.
Creativity As My Therapy
During my life, and especially at trying times, I have found that art can act as therapy. Sewing, beading, weaving, macrame, or baking has helped allow “me” time and act as relaxation. I feel lucky that I have so many outlets where I can “meditate” as I create. During the ten years I co-owned a bead shop and taught classes, I acted as a therapist for many of my customers. It was good for me, also, because I was able to let go of my own problems and focus on someone else’s. Maybe a lot wasn’t solved, but we had the mutual appreciation of being understood. During the pandemic it was hard for me to sew my usual purses, or bead a necklace, but I spent many hours making masks and sending them across the country to friends and family.
It’s important to have a community of support when going through various stages of cancer and also a pandemic. We are founding members of PMMNG (Philadelphia Multiple Myeloma Networking Group) started 25 years ago. Our support group has been a crucial part of our well being. Meeting this wonderful group of caring people has been an inspiration for us. We are so proud of how well attended our meetings have been, even over Zoom. We are inspirations for each other and sources of valuable information. We are amazed at how many new members we see each month and hope to be be a beacon of light for any who are newly diagnosed and feeling overwhelmed.
Many of us are so independent that we don’t want to impose on another person for help or even to cry with. I was told by a therapist many years ago that letting someone help you is like giving them a gift. It’s so true: they feel helpless to alleviate your stress and you need the assistance to make your life easier. It also opens the door so you can reciprocate. We need to adopt the mindset that we are all paying it forward.
Hold Onto Hope
We have exceeded our expectations for what we would experience in our life since diagnosis. We are blessed to see all three of our children marry and give us five grandchildren! We have so many wonderful friends, a close family, and a support group of people who are always there for us. There are so many treatment options available and more in the pipeline. Two foundations dedicated to supporting patients and families and working towards finding a cure, The MMRF and the IMF are valuable tools for anyone diagnosed with MM. Phil is the second-longest patient in the world taking Revlimid and was part of the phase one trial in 2001, remaining on the drug since. We feel so lucky to be a part of Celgene/BMS, and we take every opportunity to give back by speaking to groups and spreading hope throughout the MM community.
In sum, being organized, flexible, and finding time for yourself is crucial to your journey with MM. Phil has found photography and combined with his love of old cars, he has a portfolio of amazing pictures. I find that simple things in life give me pleasure, like taking a walk or getting into the mind of a 3 or 5-year-old.
Barbara is a retired accountant, bead and jewelry shop owner, and grandmother of five. She has been a caretaker for her husband of 47 years, who has been living with MM since 1995. She and Phil are founding members of the PMMNG support group, are a part of Celgene’s patient outreach, and feel a deep connection to the MM community. As unlucky as it is to have MM, they feel lucky to have the close connections they have made through this journey.