A Profile of Hope: Bob's Story
In Bob's own words
I was diagnosed in August of 2000, after not feeling like my usual self for awhile. I had trouble sleeping at night, and experienced difficulty breathing. Previously, I had my doctor check a few lumps around my chin, and at the time, it was fine. But this time I was sent for further examination. After a CAT scan and a variety of other tests, I was diagnosed with mantle cell lymphoma (MCL).
Receiving a cancer diagnosis is never something that you can be prepared for; I drove home in a state of shock. I had no conception of what MCL was, and I didn't know how to deal with it. But luckily, I had a good team of doctors.
I told my closest friends and family in person. And for those who we did not see as often, my wife and I wrote an email. It was interesting that some relatives and friends really helped. But others backed off; I think that they didn't know what to say or what to do. Alternatively, there are also many moments when you don't want to talk about it and that is ok too.
We followed the treatment plan that my doctors made, which resulted in complete remission. Looking back on it, I would have asked more questions in the beginning. At the time I only asked if their treatment plan was going to help me.
I had an autologus stem cell transplant in February of 2001. The biggest challenges were the intense chemotherapy, and having to spend three and a half weeks in the hospital. But I got to know a couple of people, and we spent our time roaming the hospital for exercise and to help pass the time. It took about a year and a half for me to feel good again. But then I relapsed in August of 2004, and after a chemotherapy treatment called RICE, I had a matched unrelated donor transplant (MUD). This transplant was much more difficult; the chemotherapy hit me harder, I had high fevers, fluid retention, and whole body peeling. I was so fatigued that I could barely lift a dinner plate, but I forced myself to be active and eventually I was able to walk my typical two miles each day. In the years following the second transplant, I had many health issues due to a weakened immune system; the worse was septic shock. I am very grateful for the good health I enjoy today, and for the excellent care I received from my doctors and nursing staff.
I'm involved with the Lymphoma Research Foundation (LRF); it's my way of giving back. I participate with the Chicago chapter's Lymphomathon where I help streamline the registration process. I attend the LRF Patient Forums and am a member of the Ambassador Program. LRF often connects me with patients to help answer questions, and be a shoulder for them. I tell patients that I'm an 11-year survivor and there is hope at the end of the tunnel. I still remember my doctor saying "I'm going to make you very sick to make you better, because we are going for the gold." In other words, he was going to help get rid of the MCL.
The end result is that I'm here and am feeling pretty good. My biggest fear is that the MCL can come back. But I've come to a point where I know that it can come back, but I just don't think about it as much.