I’ve recently signed up for the Vermont to Quebec Ride with the Multiple Myeloma Research Foundation (MMRF) Road to Victories (R2V) team. Though I’ve always known the “why” for my participation in MMRF events – she’s quite evident in my daily existence, along with all the other patients that I’ve met in this journey – it’s always been a struggle to put my thoughts into words. A challenge most of you, who have read her blogs over the years, know Jeanie doesn’t have
I’m typing this in one her “healing nest spaces” – a magical area of healing and self-comfort created in our home because, like many advanced MM patients, if you can’t get to your dreams you need to create them where you live, and she has done this remarkably.
Jeanie has been battling Multiple Myeloma since June, 2010 – when our twin boys were almost 10 and our twin daughters were 7.
Up until her diagnosis, we considered ourselves as winners to life’s lottery – sure, we were experiencing the same things most young families endured, we were constantly busy, exhausted, and unable to be on-time anywhere – but we had the treasures that life had provided us and we couldn’t have been in any better of a place.
Since diagnosis, we’ve been swept up by the world that MM has dropped us into where the value of hope and time often change positions, but neither seem to figure out a way to stay together permanently. Despite the challenges, periods of hopelessness, and pain, we’ve also been exposed to the beauty of the human spirit and lessons that have helped us live and thrive through this disease. A disease that we all know will ultimately win until a cure can be found. It has been over these 9 years that I have been on this journey with Jeanie, and amongst the valuable lessons we’ve learned is what patients need to live and thrive with MM. It’s not only a physical game, but a mental one as well. There is no roadmap, but over the course of this journey, with all the exposure we’ve had to the community and the patients within it, I’ve noticed some common themes and from these I want to share my 3 wishes for all Multiple Myeloma patients.
My 3 Wishes for Multiple Myeloma Patients
My 3 wishes are interrelated and can be summarized in a simple statement:
Until a cure can be found, I wish for all Multiple Myeloma patients to have a knowledgeable TEAM to support them within targeted treatments and protocols with low toxicity that will provide quality of life so that they can have a full and satisfying life, even if shortened by this awful disease.
Broken down into the three main components, I can provide some more detail on each wish separately.
Multiple Myeloma is multi-faceted. It is a marathon and there are many physical and mental challenges that must be overcome. Critical to any patient’s likelihood of success is the knowledge that their team has about Multiple Myeloma and the patients that are affected. We have been beyond fortunate with our team, which consists of the research leading TEAM at Dana Farber Cancer Institute, our local oncology TEAM at SNHMC, the MMRF, along with others that are not affiliated with either group.
I cannot begin to tell you how critical the word “TEAM” is here – in fact, I’ve bolded and capped it to show it.
Our TEAM consists of researchers, multi-disciplined doctors, nurse practitioners, oncology nurses, pharmacists, home health nurses, coordinators, therapists, social workers, and many more. They may not work together, or be part of the same institution, or even, be tied to oncology, but a good TEAM will all work together for the greater needs of the patient and adapt their needs as their journey changes. They will be educated, knowledgeable, and resourceful.
Our hardest challenges have been overcome by our entire TEAM working together in a coordinated effort focused on their specialization and their knowledge of MM.
Every patient deserves, if not, should demand, a strong Knowledgeable TEAM to support them in their journey.
Quality of Life.
As I’ve said, Multiple Myeloma is multi-faceted and as Jeanie’s primary oncologist once said, it’s a marathon. When she was first diagnosed, unfortunately we were not armed with the right information. We consulted “Dr. Google” and learned that multiple myeloma was an incurable cancer with a life expectancy of 1-3 years, at best. During our first meeting, our oncologist set us straight on that. He viewed Multiple Myeloma as a chronic condition, similar to diabetes, rather than a life ending disease. He was armed with his research and experiences to give him this life-changing messaging. Fortunately, Jeanie and I jumped in and have adopted this thinking and I personally know it has helped give us the last 9 years.
Part of the success of Jeanie’s journey can be attributed to the fact that some of the treatments have enabled her to continue to do the things that she’s liked and have made her whole. For example, 11 months after her autologous stem cell transplant, she completed her first (of many) post-MM marathons. She was able to do this because of her complete response with Revlimid, which was, to her, a low toxicity treatment that included a pill a day for 21 days of the month. This treatment was one of many that was launched with the help of the MMRF and a global response to MM research.
I have personally seen that quality of life can mean the difference between success and failure of treatments, along with the positive benefit on mental outlook.
The MMRF has long worked with doctors, pharmaceutical teams, and patients to accelerate treatments and provide a pathway to availability to the people that need them to survive. They have been very successful with this model and have been instrumental in the development of helping bring 11 new treatments to patients in the last decade. In that time, the average life expectancy of patients has tripled.
In addition, The MMRF had pioneered the practice of sharing critical patient data with other researchers to accelerate discoveries toward new treatments and ultimately cures. They sequenced the first myeloma genome and have created the largest genomic data set in all cancer, providing valuable information that helps researchers understand that myeloma is not one, but 12 diseases. These findings now open up the notion of “precision medicine” – that is, providing the right drugs to the right patients based on their genomic myeloma profile. This means more effective treatments and perhaps less unneeded drugs, and minimization of unnecessary toxic drugs.
Every patient deserves, if not should demand, quality of life targeted treatment options to support them in their journey.
Full and Satisfying Life.
An MM diagnosis is both frightening and hopeless and can elicit all ranges of emotion from anger and rage to sadness and despair. I still remember the phone call that we received at 6:30 in the morning while rushing the kids off to school on a Thursday. Watching the expression of Jeanie change from a quizzical nature to complete despair in moments, I could have never known what the road was that lay ahead. It felt like an eternity to meet with our oncologists, with only the internet to fill in the blanks in between.
The unfortunate reality is, that until there is a cure, in the mind of every patient, caregiver, and spouse, there is a countdown clock of indeterminate time that nonetheless starts ticking. It is in this that I have witnessed some of life’s hardest lessons and greatest joys. MM is not a choice, but the path forward for patients is a choice, or is filled with choices as to how they will their life, as long or short as it may be. My last and final wish for MM patients is to be able to live a full and satisfying life after diagnosis.
It wasn’t until we met with our oncologist at Dana Farber that the burden of ticking doomsday clock was lessened. It would be a battle, but the battle that would yield time, the precious time to see family and life milestones – birthdays, graduations, and individual growth and direction.
Jeanie’s choice became clear shortly after an inspirational event, a 5K in Boston, put on by an organization focused on bringing treatments to those impacted by MM, the MMRF. It was shortly after this event that she decided that she would do everything to continue to prove to herself and our family that this disease would not take away her life, her goals, and ambitions. In addition to her goals of filling every hour with activities to benefit her family, she pushed the envelope with activities that would fill her life with meaning and self-fulfillment.
Within a year of her first transplant, Jeanie completed her first of many marathons post-diagnosis. In addition, she continually challenged herself physically to do challenges that are even tough for non-patients, including the incredibly challenging Spartan Beast in Killington, VT.
MMRF Team fot Cures
MM could take away time, but it wasn’t going to take away meaning. For her, hours, minutes, and days had more purpose and meaning and she has learned and taught many lessons to our family and others along the way. Whether it was creating a healing nest in our home, taking a short run, or sitting for a cup of coffee with friends, she is determined to take advantage of the best that time can offer because we have experienced what the bad times bring. It has not always been a perfect approach and the challenges are apparent and revealing every single day, but she, well we, have been trying our best to give her a full and satisfying life.
As with my other two wishes, patients should demand, of themselves and of their caregivers and family members, an effort to have a full and satisfying life. This is, without a doubt, one of the toughest goals to meet and is always a work in progress, but with continued improvement of multiple treatment options focused on quality of life and low toxicity, and with a knowledgeable TEAM, my wish is that all MM patients are given the best possibility of a full and satisfying life.
I would love your support of my ride and the MMRF. Visit: https://endurance.themmrf.org/R2VVermont/CureMM