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Robbie Robinson

Non-Hodgkin lymphoma (NHL)

This testimonial includes a description of this patient’s actual medical results. Those results may not be typical or expected for the particular disease type described in this testimonial. You should not expect to experience these results.

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Video: Robbie Robinson - Non-Hodgkin Lymphoma Survivor

Non-Hodgkin Lymphoma Survivor

No case is typical. You should not expect to experience these results.

Overview

My story

In the fall of 2001, I was praying for a change in my life that would allow me to work from home and spend more time with my family. That prayer was answered in a way I wasn't expecting.

My wife, Julie, was still recovering from an operation she had in 1998 to take care of a giant brain aneurysm, and I wanted to be home more.

So that my wife would be taken care of in case something happened to me, I purchased a life insurance policy that August. I was deemed fit and healthy by the insurance company after blood tests and a physical.

In late October, I started feeling very tired all of the time. I was cramping badly when I ate anything, which shortly became all of the time, not just when I ate. I shrugged it off as best I could and assumed it was stress related from the combination of work, caring for my wife and parenting three daughters and a son.

As I felt progressively worse as time went by, in January 2002, I decided to get a checkup from my internist, whom I had known for 10 years. Once again blood tests were taken, as well as most internal exams, top to bottom. Since all tests came back as normal, aside from some minor digestive problems, I was diagnosed with having "food amnesia.” My doctor believed it was nothing more than I was just eating more than I was willing to admit to her or myself.

At the time, I had a brother-in-law who had been misdiagnosed with a very aggressive form of cancer, which was now in his lungs and elsewhere in his body. I told this to my doctor and asked her to please try some other tests, since I didn't agree with her diagnosis. She said she would order a CT scan, one of the tests that had not been done yet, but that she still believed that it was simply bad eating habits. I didn't disagree about the bad eating habits, but I did about the diagnosis.

Ten days later, I received a call at 9:30 at night from my doctor telling me that a baseball-sized mass had shown up on a CT scan of my lower chest. She said it could possibly be an infected abscess, but that I should make an appointment with an oncologist at a cancer facility in Maywood, Illinois to get a second opinion. The only word that stuck out in that conversation was the word “cancer.”

By this time it was March 2002. Five months had passed and I was getting weaker by the day and hurting more all the time. It took me 1 1/2 weeks to get an appointment with the oncologist. Once I saw him, he slapped my CT film on the light, told me that I definitely had cancer, but wasn't sure if it was lymphoma or pancreatic.

The next step was to schedule a needle biopsy, which took another week to get. After two painful, failed attempts to retrieve the biopsy, I was referred to a surgeon. Of course, it took another week to see the surgeon. A week after my consultation with the surgeon, he attempted to, as I put it, "Cut me open and get this thing out of me!" But because the tumor was wrapped around my aorta, it couldn't be removed. Ten days after the surgery, I called the surgeon and asked if he had gotten the results yet and was told, "No, but if you hear anything, Rob, let me know."

I was devastated, exhausted and becoming weaker by the day. I knew that if it was cancer, it wasn't going to take a break, go on vacation or take the day off. And I still wasn't actively fighting it, just diagnosing it. That evening, I was complaining to a friend about all of it. He told me that everyone who knew me would tell me somewhere to go, someone to see and something to take. He then gave me the number for CTCA at Midwestern Regional Medical Center in Zion, Illinois, where he had gone when he had cancer. He told me to see what I thought.

The next day, which, by this time, was late in April 2002, I called CTCA and spoke to Doug White, an Oncology Information Specialist. Doug patiently listened as I frantically told him my situation. He took my insurance info and said he would call back that afternoon. I wasn't going to hold my breath waiting for the call because of what I had been through so far with all the other medical contacts. Within a few hours, Doug actually called back and said he would FedEx an info pack about CTCA and that I should be receiving it the next day. When that truck pulled up the next day, I knew at that moment that CTCA was who I should be dealing with. Someone finally understood my sense of urgency.

I called CTCA right away and made an appointment. The oncologists and care team there wanted me to come in sooner than I could, but I had to wait for my records from the other facility. I called back a few days later in a panic because the first facility had lost all of my films and I couldn't replace them for at least another week. I was told not to worry. CTCA had all of the equipment needed to run the tests and that I should keep my appointment because they felt I had lost enough time already.

Within the next week, CTCA had done what had taken the other facility weeks to accomplish. I was diagnosed, staged, given my options of how I could receive treatment for the non-Hodgkin’s lymphoma I had, told what my prognosis was and assured that I was not alone in my fight. I was on a team now—which I was to be a big part of—and we were going to do everything possible to beat this disease.

My treatment consisted of six rounds of immunotherapy and CHOP chemo (a chemotherapy regimen) over the next eight months, followed by five days of radiation for five weeks. At last, I was physically fighting my cancer. It tried to overtake me, but with the support I was receiving from my care team at CTCA, I knew I was going to win.

I have now been an aftercare partner on the healing team of my healthcare management for many years. I joined the CTCA Cancer Fighters® program to become active in helping other cancer-fighting partners recognize their own strengths in their fight. I speak and listen to others who are seeking insight on CTCA and its philosophy of healing. I have made life-long friends with other cancer fighters through the Cancer Fighter patient-to-patient network, such as Jon and Rene Tackett, whose own story is one of true triumph and courage. I get to have an active part in actually saving someone else's life through all of the opportunities offered through CTCA.

Because of the philosophy that is cultivated throughout CTCA, I have been able to become an ambassador for hope, faith and belief that just because someone tells you that you have cancer, it doesn't mean your days of greatness are over. I walk in marathons to raise money and awareness for the fight against blood cancers.

Thank you, CTCA, for helping me to realize that I have the ability to be enabled in life—not disabled—because of cancer.

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