Staying Alive...For the Cure
This is a story of a survivor, me, Michael R., I am 59 years old, and I live In Jamison, Bucks County, PA. I am married to a wonderful wife and caregiver, Monique for 31 years. I have two children, Christina 27 who lives in Doylestown and Theodore, 20, who attends Lehigh University. I had virtually no symptoms of my blood cancer multiple myeloma until a tumble in the waves at the beach resulted in a compression fracture in my neck, (happened on a beautify July day in 2011, I was trying to play ‘teenager’ with my son and his friends by bodysurfing) this began my journey with Multiple Myeloma, or MM for short. I was 51 years old at time of diagnosis. After many months of Chemotherapy and a stem cell transplant I obtained remission in early 2012 and has been in active observation remission ever since. Something that still impresses me is that my doctor never talks about prognosis. If I ask, he says, “My job is to keep you alive, and your job is to live your life.” So I am a survivor!
In April 2018, I had surgery to relieve intense pain in my spine due to arthritis, spinal stenosis and other issues. The surgery relieved 90 percent of my pain, and I can swim, exercise and walk again. I’m currently on a “drug holiday.” I only take medications to treat symptoms. I have bloodwork every six weeks to three months along with a bone treatment to help strengthen my bones. If I come out of remission, I’m open to any clinical trials my doctor recommends. I try to stay educated on the latest therapies for myeloma by attending conferences or watching webcasts from trusted myeloma resources.
My wife comes to all of my doctors’ appointments. We drive into the Philly, and we typically try a new restaurant while we’re there. Making it a fun day takes the edge off that fact that at any moment a blood test could reveal that I am out of remission. About once a year, our son and daughter go with us, and they get to ask my doctor all the questions. We’ve done it that way since the beginning. It makes them feel involved and informed.
I have also become totally committed to helping others facing myeloma, it’s so important to give back just a bit, so thru my work at the Leukemia & Lymphoma society as well as my multiple myeloma journey partner programs. I am lucky to be able to help.
It all occurred to me that I can make a difference in people’s lives when Monique and I attended our first Bone Marrow conference in San Diego in February 2014 as guests for my Multiple Myeloma Journey Partner’s program (To learn more about MMJP click here https://www.mmjourneypartners.com/ ). After a night of enjoyment, a friend asked ‘Did we ever think after being diagnosed with an incurable cancer that you would be on the USS midway in the middle of February? “ The answer was “no”, but I am sure glad we are. That was the beginning of our family setting out to make a difference in people’s lives.
My perspective on life has changed, I pride myself on living a different life with cancer. You have to rule it, not let it rule you.
I find my biggest challenge today is not being able to do everything I think I should be able to do. Because my bones are brittle, it’s a fine line between pushing myself and protecting myself. My wife and family have been a huge source of support. Today one of my favorite things to do is swim and exercise “it clears the mind,” and combats the fatigue that is so often occurs with myeloma patients.
I have many goals, daily, weekly and long term. My sights are always set on the future: first goal – to see my daughter graduate from college-realized in 2013. Second goal (very emotional) was to pass the 5 year mark (the median survival rate for MM is 50% at 5 years). Third goal- see my son graduate from high school, which he did in 2017.
Now my goals are seeing my son graduate from Lehigh University in 2021 and walking my daughter down the aisle. As a survivor is so important to focus on the present, to live in the present and keep hope that you will be surviving for the goals you set.
Back to helping others..
I am actively involved with the Leukemia and Lymphoma Society (LLS) for the past 7 years. Fundraising thru Light the Night Walks, giving mission speeches, advocating for improved laws, and better access to treatment for all, and talking to other patients diagnosed with blood cancers.
This year I also participated in a different campaign for LLS-The Man & Woman of the Year Campaign. This was a once in a lifetime opportunity to make a difference in the lives of others living with cancer.
The Man and Women of the Year Campaign is an opportunity to raise funds for life saving research. Maybe this research would saved a dear friends life who passed from MM just a few short weeks ago. It is an intense 10 week campaign that involves hundreds of letters and phone calls, thousands of emails and several huge events to generate donations. The goal is to raise $50,000 so that a research grant can be granted in your name or requested cancer type. It’s an opportunity to provide education and support for blood cancer patients and families. When a person gets cancer, everyone around them “gets it too” – it effects every aspect of their lives. My thought was to work together through my Man of the Year campaign and eliminate the heartache, pain and endless therapies for MM patients by funding research to find a cure. The candidate that raises the most dollars becomes Man or women of the year.
I was told 7.5 years ago I would likely die within 5 years after my diagnosis, (the 5-year survival rate for MM is less than 50%). So, I am currently beating the odds and am truly blessed to be alive today. Currently, there is no known cure for MM, so raising dollars for research is vital.
I did exceed my fundraising goal of $50,000. As of June 21st, I raised over $90,000, in ten weeks, towards blood cancer research. However…I did not win the Man of the Year Award.
But, I did win something dearer to me.
I won the “Mission Award” which to me is the most important thing I could have done.
The Mission Award is given to the person who exemplifies and has given the most effort and value to the campaign through spreading the good works thru grass roots efforts that LLS does.
The mission award was derived out of the need to thank and honor the person who gave the most to the campaign, but may not have won the title. LLS is a volunteer driven, staff supported organization and me reaching out to 100’s of new supporters and having them understand the ‘mission’ is of high value to the organization.
I am so honored and humbled to have won the mission award.
Through my efforts and the efforts of all of those who supported my campaign I know that we CAN, we WILL, and we ARE making a difference in peoples’ lives.
If you would like to donate for blood cancer research and support , you can give to our Light the Night campaign here https://pages.lightthenight.org/epa/BucksCo19/mriotto.