Robbie Robinson: My name is Rob. I had non-Hodgkin’s lymphoma and I have been cancer-free going on three years now.
Originally I was diagnosed with food amnesia by my gastroenterologist that I had known for ten years, and I didn’t agree with that. I had had a brother-in-law that had just been misdiagnosed also and when I told her that she said, “Okay, we will run a CAT scan”. They ran the CAT scan and saw a mass in my chest about baseball size and from there she recommended I go to a different place, a large training facility here in Chicagoland area and I didn’t like the pace of that. It was extremely slow to me.
And so I called a friend and when I was complaining to him about the slow pace he suggested that I call CTCA which I did, and the next day the FedEx truck pulled up with packet of information from CTCA and I knew those were the people I needed to be talking to.
Well, they gave me an option – they said, “You have non-Hodgkin’s lymphoma. Normally we would wait and see but you are at the point where you are having pretty bad symptoms and these are the options. If we can give you treatments on a weekly basis, smaller doses or we can do every three weeks for the heavier dose”, and at that time I felt like I could handle the heavier doses so that’s what we did, and I liked that they involved me in the decision-making on that.
They treat you as an equal. They let you in on it. Where I was going at that time, it was as if you were an outsider and they were telling you what they were going to do without asking you as if you wouldn’t have the knowledge to make any decisions yourself. And when I came up here they were very open. They listened to my concerns and together we came out with a plan.
My oncology nurse was Pam, who is a great person. She has been a friend through this whole thing. She knows my case probably better than anyone does because she has been with me the last four and half years handling the case and any questions I had, any concerns – she was always there to answer them and direct me to who I needed to talk to.
Dr. Bernard Eden is a radiation oncologist. After I went through eight months for six rounds of chemo my next step was to do radiation. At that point we were pretty sure that the cancer had died off basically, and to make sure we were going to do the radiation to kill off any cells that had got away from that you couldn’t tell. He was my radiation oncologist, very warm, caring individual.
There’s a wonderful sense of community here. As soon as you walk in the door, a couple I had met through the patient-to-patient network later on after my treatments and everything her comment was, as soon as she walked it oozing out of the walls – the positive atmosphere.
Everybody here – from the person sweeping the floors to the cafeteria to the doctors, are all on the same page. They are all focused on the patient and their needs, and not just the patient but their family and their caregiver also, which is a very important part.
What do I have to live for? I have very many things to live for. I am a very blessed man. I have a beautiful family. Somebody was complaining to me one day about how they hated that their family and friends had to do this or that for them and I said, “You are looking at it wrong. You should be telling yourself how fortunate you are that you have the people in your life that care enough about you to want to help you basically.” And I focused on that. I didn’t focus on the negativity of cancer. I have gotten much more out of cancer than cancer ever took from me.