Chris Gorelik’s first diagnosis of lymphoma started in 2010. Initially, he found himself fighting to stay awake and sleeping as much as 18 hours a day. As a single father of two young children, Gorelik needed as much energy as possible, but his efforts to increase his energy were not working. After numerous doctor visits and tests, he received news that a tumor was growing on his kidney. It was later confirmed he had diffuse large B-cell lymphoma (DLBCL).
“I remember my doctor coming into the room, looking very grim, to tell me I had cancer. But quite frankly, my first reaction was that I was relieved to finally know what was wrong with me,” says Gorelik. “I was even more relieved when I learned my cancer was DLBCL, because of how effective the treatments are.”
DLBCL is an aggressive or fast-growing type of non-Hodgkin lymphoma (NHL). DLBCL affects B-lymphocytes, which are one type of white blood cell. These lymphocytes make antibodies to fight infections and are an essential part of the lymphatic system. DLBCL is the most common type of NHL worldwide, accounting for 18,000 newly diagnosed cases in the United States each year.
Presently, the most widely used treatment for DLBCL is the combination therapy known as R-CHOP (rituximab [Rituxan], cyclophosphamide [Cytoxan], and prednisone). The R-CHOP regimen is usually given in 21-day cycles (once every 21 days) for an average of six cycles. However, the length and number of cycles given can vary based on the patient’s disease and health status.
“The most difficult part of my diagnosis was telling my children, who were 12 and 10 years old at the time.”
“The most difficult part of my diagnosis was telling my children, who were 12 and 10 years old at the time,” says Gorelik. “Fortunately, we had been working with a family therapist since 2004. To say she was instrumental in helping our family navigate through some difficult times is a massive understatement.”
With the family therapist’s help, Gorelik was successfully able to communicate with children Madeline and Maxwell throughout his illness. “The best advice our therapist gave us was that there was no need for my kids to participate in my illness or even be a part of my care. They could just be kids, doing kids things. In fact, they shouldn’t even be given any slack from their daily routine because of my illness.” says Gorelik. “They should still be held to family standards, attend class, do homework on time, complete their chores, have playdates and go to all their extracurricular activities.” This helped the children for many reasons, and it also helped Gorelik as it took a great deal of emotion out of everyday life decisions.
Gorelik’s therapist also gave him a mantra, “If I do what the doctor says and I don’t do anything stupid, I’ll be fine.” This mantra, according to Gorelik, helped his entire family, especially when he had to go off to the ER with an infection or leave for a week for a new chemotherapy treatment. Gorelik would tell the children this mantra and it calmed everyone down right away. It also helped him make the right decisions when he felt too tired to complete tasks from his doctor. “In my mind, a big part of beating cancer is doing what the doctor tells you and not doing anything stupid!” Gorelik jokingly says.
Unfortunately, one year after completing treatment for DLBCL and in remission, he began to feel soreness and stiffness on the right side of his body. During an appointment with an acupuncturist to help with his body stiffness, the right side of his face went completely numb.
“The right side of my face just fell. The acupuncturist looked at me and said, ‘You need to go to the ER right now.’ So, I drove myself to the ER,” says Gorelik. “When I walked in, a nurse took one look at me and immediately pulled me through the lobby past a dozen other waiting patients and brought me in to see a doctor. Regrettably, the doctor misdiagnosed me with Bell’s palsy. This resulted in prescribing me the standard treatment for Bell’s palsy, a high dose of steroids, which masked the real issue.”
Three weeks following the ER doctors’ protocol of steroids, Gorelik’s symptoms became so bad he was no longer able to move his right leg and was unable to walk. The pain was incredible. After several tests, he was finally diagnosed correctly with central nervous system lymphoma (CNS).
“Looking back, I would’ve benefited greatly having an advocate to help me navigate through this illness. I was essentially going through this alone while raising two children at the same time,” says Gorelik. “Throughout all of it, I never thought to call my hematologist or even let any of my other doctors know I had been to the ER and diagnosed with Bell’s palsy. Just doing this would have saved me countless hours of pain and confusion. It seems crazy to me now that I failed to reach out to any one of my primary physicians. However, it does demonstrate how one’s thinking becomes distorted and clouded when going through an illness. It’s important to have someone there to double-check your thinking during times like these.”
Gorelik also said that this does not mean an advocate should do everything for the patient. “I believe one of the most helpful things for me was the fact that I was responsible for making all my appointments and travel arrangements for my treatments, keeping track of my medicines and ensuring the care of my children. This forced me to stay alert and connected to the world. Sometimes an advocate can do too much, but it’s important to remember, sometimes the best help is to do nothing at all. It is finding the right balance that makes an advocate most effective.”
CNS lymphoma is an aggressive form of NHL in which malignant (cancer) cells form in the brain’s lymph tissue and/or spinal cord. It may develop in the brain, spinal cord, eye or leptomeninges (two of the membranes surrounding the brain and spinal cord). The main symptoms of CNS lymphoma are focal neurological deficits (i.e., problems with nerve, spinal cord or brain function), but headaches, vomiting, confusion, seizures, personality changes and blurred vision can also occur.
Dealing with a more severe cancer and poorer prognosis, Gorelik set out to accomplish specific goals. “Survivorship for me at that point meant getting my kids to college.
“Looking back, I would’ve benefited greatly having an advocate to help me navigate through this illness. I was essentially going through this alone while raising two children at the same time…”
I thought if I can hang on long enough to get them to college, they would be okay,” says Gorelik. “I had to figure out how to stay with them long enough to do this. After this decision, it really never again occurred to me I was going to die. I can’t explain why except to say that the children were an awfully great incentive!”
Through a connection with a friend, Gorelik was able to obtain referrals to three oncologists specializing in CNS. Gorelik decided on one doctor offering a different protocol outside the standard treatment. “It was a leap of faith, absolutely — to try a different treatment protocol, especially in my condition. But what encouraged me to try this treatment was my confidence in the referrals and the fact that this particular doctor had such an air of tenacity and reassurance. The sureness that I was on the right path saw me through many days and nights of what otherwise would have been much scarier.”
Gorelik’s new treatment protocol required him to receive 17 milligrams of methotrexate every three weeks. After almost one year of this treatment, Gorelik was given a new chemo “cocktail” that he describes as the most physically difficult part of his protocol. This was followed by an autologous stem cell transplant. Two years ago, and five years after his stem cell transplant, Gorelik finally received the news that he is cancer-free.
Since then, Gorelik continues to be active, playing low-impact sports that allow him to stay healthy without agitating some of the prolonged symptoms and side-effects acquired from his lymphoma and aggressive treatments, like seizures and hemophilia. He also uses his story to connect with others in the lymphoma community as an LRF Ambassador, and spoke at a TED Talk titled “How to help a friend with cancer.” He’s even remarried and has a large, happily blended family. His daughter graduated from the University of Alabama one year ago, and his son is currently a junior at the University of Southern California.
“I remember the day I helped my daughter move into her dorm. A typical college move-in day — tons of parents with their kids, everyone whizzing around from dorm room to dorm room, boxes everywhere,” recalls Gorelik. “After all was squared away, I hugged my daughter and said goodbye. When I left her room, miraculously, the entire hallway was empty, not a soul but me. It was at that moment on my way to the elevator when it hit me. I raised my fists over my head and quietly said to myself, ‘I did it. I got her to college.’ No exclamation points. Just a silent moment of pure triumph.”
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