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This year, I will once again be participating in the Multiple Myeloma Research Foundation (MMRF) Team for Cures 5K Walk/Run on Montrose Beach in Chicago, Illinois on Sunday, September 15, 2019. I have committed to raising awareness and funds to accelerate finding a cure for multiple myeloma, which is the second most common blood cancer and is incurable. Your generosity truly makes a difference, as funds raised at this event have helped to:
Nearly tripled patient survival
Deliver ten new treatments in a decade
Launched over 60 new clinical trials
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)(3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy's diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure.
As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $330 million since its inception and directs 90% of total budget to research and related programming. The MMRF has received a “Best in America” Seal of Excellence from the Independent Charities of America, and an “A+” rating from the American Institute of Philanthropy. The MMRF has been recognized by Philanthropedia as one of 16 expert-identified, high-impact nonprofits in the field of cancer. We are also in compliance with all of the Better Business Bureau’s Wise Giving Alliance Standards for Charity Accountability. Rated 1 of 2 highly rated cancer organizations from Consumer Reports.
For those of you who don't know my story, here it is...
On June 7, 2015, I did one of those sneeze coughs which sent an electrical jolt down my back along with extreme pain. I tried the holistic approach, but then I started getting numbness in my abdomen. As the days passed....the numbness got progressively worst. No feeling in the saddle area or sacral and then down my legs to my toes. Needless to say, I was concerned and made an appointment with a doctor my cousin had suggested. To my surprise, they admitted me on June 15, 2015 and did a MRI of the lumbar, thoracic and cervical spine along with CAT scans. After several MRI and CAT scans the doctors discovered a lesion that was attached to my spine and wrapped around my spinal cord. They performed a laminectomy which removed my spinous processes from T7 to T9. They were able to remove most of the lesion except for the portion that was wrapped around my spinal cord. I was told that it could be one of three things: a hematoma, an infection, or a tumor which would have to be sent for biopsy.
As it turns out, my lesion that they removed from my T9 vertebrae was a tumor that was later diagnosed as Multiple Myeloma (MM). What does that mean? Well, there are many antibodies in your body and one of my antibodies is producing way more protein than the other ones. At this point, the protein starts "punching holes" into my bones making my bones porous and susceptible to breaking. They also performed a bone marrow transplant that revealed that my cell structure was composed of over 45% MM cells.
Over 20 years ago, it was suspected that I had MM. A total body bone scan along with several blood tests were performed; however, nothing tested positive at that time. So although the results were devastating because there is no cure, it was not surprising.
After being in the hospital for several weeks, I was finally discharged with a "turtleshell brace" and underwent 4 months of a chemotherapy combination of Velcade/ Dexamethesone/Revlimid. After treatment, I underwent another bone marrow biopsy and found that the shots and pills lowered the percentage of MM Cells to 15%. I still had to undergo apheresis for chemo via IV and a Stem Cell Transplant (SCT) in order to put me further into remission. This was probably the most difficult part of treatment as it made me very sick.
On December 28th, 2015, I was admitted again into Lutheran General Hospital. I was given chemo for the 1st couple of days and then underwent the SCT. My immune system was completely down and stayed in the hospital for at least a couple weeks.
After a few months, another bone marrow biopsy was done and it revealed that my percentage of MM went back up to about 40%. So, the chemo combination that was used did not work. As a result, I had to undergo a different chemotherapy combo of Carfilzomib/ Dexamethesone/Revlimid for about 6 months.
My 4th bone marrow biopsy was performed and revealed that the percentages of MM cells went back down to 15%.
What happens now? I was admitted into Lutheran General on December 12, 2016 for a 2nd SCT using a different chemo combo of Bendamustine / Melphalan. Results were better, but not quite into full remission which is anything less than 5%.
My Oncologist, Dr. Leonard Klein, wanted to give me a break at that time both physically and mentally. He put me on a maintenance program of Revlimid that will with hopefully put me into full remission or keep my MM cells from going out of control.
My body is still healing at this time and I keep forgetting about that because I was unexpectedly admitted into the hospital on May 9,2017 for a Bacterial Pneumonia with a Viral infection. I guess my immune system isn't up to par and I'm still susceptible catching thing easily which was proven with a viral cold that kept out of commission and off chemo for a majority of the the summer/fall in 2018. I then went into the hospital again for a small incision and drainage surgery that turned into MRSA on December 2018.
I thought I was good and went on a couple rounds of chemo before I started having back and rib pain after my last Zometa infusion. I was sent to the ER from my oncologist to check for a blood clot in my lung after hearing diminished sounds in my right lung. It turns out I had fluid on the bottom of my right lung and it was diagnosed that I had pneumonia again and that it presents itself differently (ie. the back and rib pain). So, I was admitted again and put on heavy antibiotics. I’m finally back on my chemo regimen and have to constantly remind myself to slow down and protect myself by constantly washing my hands after touching public things like carts or doors at the stores or staying away from sick people.
Reading this over, I guess I've been through a lot. My outlook still remains positive as I put all my faith in God. I know that He is control and has a plan for me. I am so grateful and thankful for all your continued prayers and support! Thank you again and I hope to see you at Montrose Beach this year for the annual MMRF 5K Walk/Run!
If you're not able to join us at Montrose Beach this year, please support my participation in the MMRF Team for Cures 5K Walk/Run. Your donation will have a meaningful impact on the lives of thousands of patients and their families! The MMRF is bringing treatments to trial 60 percent faster than the industry standard and tripling life expectancy. THIS IS SCIENCE, NOT FICTION. The MMRF needs your support. History is being made, so I invite you to join us.
* Did you know you can double your impact in seconds? Many employers sponsor matching gift programs and will match charitable contributions made by their employees.
Find out if your employer offers this benefit! Visit the MMRF Matching Gifts website (themmrf.org/matchinggifts) or ask your Human Resources Department!