Linda, Follicular Lymphoma Survivor

I always thought I was the healthiest person in the room. I was in the gym almost every day and would take long walks at every opportunity. Then, in April of 2008 my happy world changed forever when I found a lump under my right arm.

I had been having night sweats but paid no attention as I thought they were just hormonal. I decided to go to my ob/gyn who informed me that the lump was not breast tissue, and she immediately referred me to see an oncologist. At this point, I decided to tell my husband, and from that moment on, we were on this road together. The oncologist did a full examination and discovered my spleen was also enlarged, but told me not to jump to conclusions until a biopsy of the lump was performed. A few days later, they performed the biopsy, and the report came back that I had follicular lymphoma. I was referred to a lymphoma specialist who immediately had me get a PET scan, and the next day when we sat in his office he showed it to us and said that my spleen was “on fire” – and needed to be removed as soon as possible. Within a few days, I was in the hospital to have my spleen removed laparascopically. The results from my spleen biopsy only added to my problems, as the doctors then informed me that I my follicular lymphoma had transformed into an aggressive lymphoma called, diffuse large B-cell lymphoma. In a matter of two and a half weeks, I went from thinking I was quite healthy, to learning I had not one, but two types of lymphoma. Jackpot!

Up until this point, I hadn’t told my son what was going on, but once I learned the complexity of my diagnosis, I knew it was time for me to tell him – and I also knew that it would be the hardest thing I had ever had to do in my life. My son had recently graduated from business school and landed a job that he loved. However, his firm was unfortunately on the road to collapse and he was going to have to search for a new job when the job market was rough – and now I had to tell him that his mother had cancer. Needless to say, there were lots of tears.

On May 1, 2008, my doctor started me on a chemotherapy regimen called R-CHOP and I was scheduled for a total of six treatments. At the time, I was the publisher of a travel magazine and had multiple business trips planned, including one to Korea, as well as a vacation to France on the books. I expected that I would have to cancel everything, but my doctor gave me the go ahead to travel, and that’s exactly what I did. Everything wasn’t perfect, but in the end, I am so glad that I decided to go because I was able to continue living my life in a modified but normal way. I was especially glad that I never felt nauseous during my treatments because I love food and fortunately was able to eat whatever I wanted.

Later that summer, I received an email out of the blue from my ski instructor in Colorado, who told me that she had another student living with lymphoma who had benefited greatly from the Lymphoma Research Foundation (LRF). I started with LRFs website and so many of the fears that had built up from random internet searches were allayed – I got real information framed with hope. I then discovered that there was a networking meeting of the New York Chapter coming up and so my husband and I decided to go. It was really one of the best decisions I’ve ever made. At this meeting, I met Paul Majkowski, who was Chapter President at the time, and more than 20 other lymphoma patients who were living with various subtypes and stages of the disease. I knew right then that I wanted to become part of this wonderful and helpful organization. It was targeted to lymphoma, had the best of the best doctors on its Scientific Advisory Board, funded critical research, educated patients, and most importantly to me, I felt welcomed by a group of very nice and dedicated people. Over the years, I’ve held a variety of volunteer positions with LRF, including following Paul as NY Chapter President. I have also been highly involved in the organization of LRF’s New York Lymphoma Walk for the past ten years.

After my multiple cycles of chemo, I was luckily declared to be in remission. I continued with rituxun maintenance therapy for the following few years, but basically my life got back to normal. That is until, October 2016, when I felt a large, hard lump on my neck. My doctor came to the rescue again, and took two biopsies to determine that my diffuse large B-cell lymphoma had relapsed – an occurrence that was extremely rare after five years.

My doctor recommended that I receive a stem cell transplant – a challenge that was a much more risky and toxic than what I’d gone through nine years earlier. But, I was lucky about one thing. Nine years earlier at my first LRF networking meeting a fellow lymphoma patient, but otherwise total stranger, suggested that I have my stem cells harvested and stored. I spoke with my doctor about who agreed that it would be a good idea, even though he thought that I would never actually need them. Due to the support and advice from a total stranger, I was able to have an autologous stem cell transplant, and not have to deal with finding a donor or the additional side effects that are sometimes associated with donor cells. The procedure was difficult to say the least, and for weeks, I felt like I had the worst flu in the world, but I got through it. One of the reasons I was able to push through, was the support that I received from my colleagues and friends at LRF. There was a constant flow of emails, calls and all forms of support.

Now, two years later, I am still healthy and grateful for the life I currently get to lead. My son is married to a woman I adore, I have a grandson, and life is just great! Though it was a tough journey, I got through it with the support of my husband, son, daughter in law and dear friends who were there with attention, love and FOOD!