On January 24th, 2012, I heard the words, “Mr. Baker, do you mind if we place an IV in so we can give you some contrast dye?”
My experiences with two previous cancers taught me that there is only one reason for contrast dye after performing a scan without contrast. The imaging technician saw something fuzzy on the scan that he wanted to get a clearer picture of. At that very moment, I knew two things: I had a brain tumor and God had just answered my prayer, which was simply to help me find my way. Not for one second did I consider dying, rather I began to develop a plan to get through what I knew was going to be a very tough battle.
I had already survived systemic Non-Hodgkins Lymphoma on two occasions. In 1999, at the age of 29, I had a small bowel blockage due to advanced NHL, which had grown from my lymph nodes into my small bowel. Pathology on several surrounding lymph nodes showed that my Lymphoma had already spread to lymph nodes throughout my abdomen. He performed a bowel resection and, after a few weeks of recovery from the surgery, I began five months of chemotherapy. I was told that radiation could increase my chances of five-year survival. I had lost 75 pounds after surgery and before chemotherapy because I was unable to eat for about five weeks due to the pain caused by the spread of lymphoma.
The good news was that everything changed after my first chemo treatment and I started eating immediately following that first treatment. I also went back to work and to the gym to try to rebuild all the muscle that I had lost. I achieved remission and returned to my life as it was. I truly believed that my diagnosis was a wake-up call, but I failed to make any real changes. In 2006, just after Christmas, I was told that my cancer had returned. Again in my abdomen, but this time I had a golf ball size tumor resting on my kidney. Pain saved me yet again by alerting me that there was a problem.
I had chemotherapy from January through March and had an Autologous Stem Cell Transplant (ASCT) in April of 2007. Again, I had achieved remission. We had two sons by this time. The youngest was still an infant and the oldest was only two years old. I realized how lucky I was to have survived this disease twice, but still only made minor changes in my life and the way I responded to the world, particularly to my wife. I was aware that the most important thing to succeed at in life was to be the very best husband and father I could be, but I felt that I was coming up short. This became depressing so I turned to God to help me find my way.
In January 2012, I was having stroke-like symptoms such as slurring my speech, loss of balance, and the inability to construct an email. I went to the ER and it was determined that I had a brain tumor. The very second that I learned that I had a brain tumor I began to develop a plan to, not only to fight the cancer, but to change my life completely. I didn’t know how I was going to do that, but I was determined. I had brain surgery to get a sample to determine what kind of cells we were dealing with. I was diagnosed with Primary Central Nervous System Lymphoma (PCNSL), a very rare brain cancer with a dismal prognosis. Immediately when I returned home from the hospital, I began to research my disease. I searched the Internet for hours and was unable to find one encouraging article suggesting that I could be cured of this disease. I stopped researching for two days because I found it impossible to stay positive based on what I was reading. My oldest son, who had just turned 7, asked me a question that told me how important it was for me to find a way to survive. As soon as I put him and his brother to bed, I immediately opened Google and typed in “PCNSL Survivors”. I found a 28-year survivor and a 10-year survivor within seconds. My whole mindset changed in an instant. I would learn that the 10-year survivor had started a website called the Braintrust a few years earlier and a support group that connected people through email. I joined immediately and was so inspired by all of the members of the group, which consisted of survivors of PCNSL and other types of brain tumors that I had the most important tool to have in my arsenal – I had hope. Hope led to an absolute belief that I would survive.
My research indicated that the best treatment for PCNSL was available at Sloan Kettering in NYC, which is only 2.5 hours south of our home. However, I decided to seek treatment locally. I achieved remission for a brief time, but recurred almost immediately following treatment. By August 28th, 2012, I had almost lost my life, but my wife had arranged for me to be admitted to Sloan Kettering. I would receive an extremely aggressive treatment regimen from August until November and achieved remission yet again. This time I was offered an opportunity to have a second ASCT if they were able to harvest enough viable cells.
On Black Friday 2012, I learned that the apheresis was a success and I was going to have the transplant. I entered the hospital on December 18th and was in isolation until January 14th when I was released and went to the ACS Hope Lodge in Manhattan. There were moments during those 28 days where I really believed I was not going to make it, but with the support and expertise of an army of healthcare professionals, I survived and continue to recover from the effects of the treatment. I have been able to coach youth baseball for both boys, participate in the Livestrong program at the YMCA, I went back to work on October 10th , 2013 after nearly two years, and I recently joined the Leukemia and Lymphoma Society’s Team-in-Training. I believe that my prayer was, in fact, answered. My life has changed completely. I view the world and respond to life’s circumstances differently. I changed my thinking completely. My focus is on others rather than on myself. I am committed to helping others through support groups such as the Braintrust and WhatNext. I have discovered that sharing experiences with other survivors is absolutely priceless. For the first time in my life I go to bed at night knowing that I am doing the very best that I can in every aspect of life. I have certain limitations, but I continue to improve. I am truly grateful for my life and all its blessings. I have been given the opportunity to continue raising our two boys, Jacob and Shane, with my wife, Suzette, which is the greatest blessing imaginable.