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Scott Olmstead

My life and diagnosis


Scott Olmsted lives in Lakeville, MN, with his wife Michelle and their two lovely daughters, Olivia (10) and Eleanor (8). In late 2010, Scott began having stomach pains, and in January of 2011 was diagnosed with Stage IV Mantle Cell Lymphoma. With great attentive care from his team at Mayo he underwent multiple rounds of varying chemotherapy and in August of 2011 was cleared for a stem cell transplant. During Scott's recovery at both the Transplant House and Hope Lodge in Rochester, he was blessed with the presence of his 23 year old cousin Rob, who paused his life at college and assisted with Scott's full time care so Michelle could balance the required care for Scott with the needs of their young girls.

By December of 2011 Scott was recovering well and wanted to regain his physical strength along with paying forward the swell of support he received during his battle. He joined his local chapter of the Leukemia and Lymphoma Society's Team in Training, committing to training and completing a triathlon in July 2012 while raising funds and advocating for those afflicted by blood cancer. After completing his first triathlon with Team in Training, Scott found great satisfaction in the connections he made to both survivors and the fight for a cure. He realized the importance of giving back and became an advocate for LLS.

In March of 2013 Michelle was diagnosed with breast cancer. Scott immediately planned to pull back from his training to attend to his wife. Michelle, however, urged him to continue the fight for those with blood cancer and search for a cure. She stated the reason her prognosis was so good was due to the commitment and advocacy of those before her. If there was to be a cure for other cancers, the fight must continue. Scott attended to Michelle and their daughters until Michelle recovered and then completed his Half Iron Triathlon, later that year adding on a marathon and long distance ski race with Team in Training.

Scott has continued his advocacy for cancer treatment and cures, training and fundraising with LLS and in 2018 he joined their Board of Trustees. He is so thankful for the time he has been granted to spend laughing with his wife and kids, as well as being a part of and witnessing his daughters maturity into amazing young ladies.

Before my familys battle I had little to no personal connection to cancer, but in the years since my diagnosis I have been trusted with many stories of friends and colleagues personal struggles with cancer. I am extremely motivated to continue my advocacy with the Leukemia & Lymphoma Society and finish the fight for better treatment options and an eventual cure.

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In October of 2010 while spending late nights renovating the only bathroom in our 1940s house around the needs of my wife and two young girls, I started experiencing pain in my chest as I lay in my bed for a nights sleep. I ignored it for some time until I was talked into getting my first full physical since my youth, as I was 36 now. I did not have a regular physician so I choose a clinic that was convenient to my downtown office. While getting my physical I mentioned the perceived acid reflux symptoms and was prescribed Prilosec OTC. This seemed to subside the pain for a bit and as I felt the pain reach to my abdomen I kept popping more Prilosec. This continued into December, when I was now sleeping on the couch at night as the pain was consistently waking me and a dramatic body shift or necessary 90 degree positioning made it impossible to get any real rest. At our annual Christmas party we host, a new neighbor that is a physician politely offered his advice if ever we needed it for our young children, I took this moment to mention my condition and he advised me to get a blood test. I returned to the clinic updating my status and requested a blood test. Being the holidays this ended up happening just after Christmas. My clinic directed me to further blood tests at the University of Minnesota, but as I waited for those tests and results I had the original blood results in hand. My untrained online research during that pause to diagnosis gave me many possible outcomes. I remember visiting my grandfather in the hospital, being treated for his diabetes, and asking about our family history regarding cancer. He was adopted, so many of the family lines were unknown to me. On Friday January 7th 2011 I received a call from the University of Minnesota while at work, I headed to a conference room for privacy, I was told that I had cancer and that it was either a specific form of leukemia or lymphoma and that I should return to the oncologist on Tuesday with my wife to discuss treatment options. It was strange that the first person I called on my way out of the office was my manager who was planning to fly in on Monday to interview me for a promotion and I had to tell her to cancel as I was dealing with this knowledge. I went home and after the girls were put to sleep I broke the news to my wife.

We met with the University oncologist and were explained that the treatment of Mantle Cell Lymphoma had two distinct schools of thought, theirs being the more aggressive of the two. We decided to request a second opinion from the Mayo and after finding an immediate personal comfort with their team we bought into a less intensive plan that would allow me to continue to work and be with my family for the majority of treatment cycles. I remember pulling the Mayo oncologist aside once my wife left the room and telling him I can handle the strong stuff, to be rebuffed with a message of in due time.

We started the first round of treatment right away and made it through the first couple rounds with great promise, eventually paused by the mysterious build up of fluid in one lung that was equated to a leak in the lymphatic system. I was advised that a drastic reduction in fat intake could curb the problem so I began my daily 10-gram of fat diet and periodic draining of the lung. This restriction proved to be especially damaging to my psyche.

After coming up with a game plan for the leak, we continued with treatment, only to find that the initial regression hit a tough spot and more intense chemotherapy was called for. The treatment regimen was intensified in steps, balancing the fluid draining and eventually the most intensive chemotherapy shrunk that stubborn mass. During the high intensity chemo, while having my fluid buildup drained, my lung was accidentally punctured and I was put upon a devise to inflate my lung. That was definitely the most painful portion of my treatment to date, but the recovery came with knowledge that I had reduced enough of the cancer that I qualified for a stem cell transplant.

I received a stem cell transplant on August 17 2011.

During my recovery I was blessed to have my 24-year-old cousin pause his life and attend to mine for a month of recovery. My wife was a huge support system, but with two young children at home it was impossible for her to care for me 24/7. Rob was able to stay and care for me until I was declared ready to go home in early September.

A follow up scan in December of that year showed no residual sign of cancer and I was declared in full remission.

I remained in remission for nearly seven years, with periodic checkups as we knew this would eventually return. In the summer of 2018 I noticed a small lump in my calf. Upon notifying Dr Thompson at the Mayo, she ordered a biopsy. The results showed signs of Mantle Cell Lymphoma. A full run of blood tests, and scans showed a best-case scenario in that the cancer was contained to this mysterious lump. A regimen of localized radiation treatment was prescribed and after 18 rounds of daily zaps the lump regressed eventually disappearing. After another follow up scan in February I was again declared in full remission.

I am very excited with what is happening in the world of research and treatment options. Since my initial remission a new drug has gone through FDA fast tracking approval and is showing promising results for relapsed MCL. My hope is that when this once again turns its ugly head there will be even more effective options to extend my time.

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