My primary oncologist at City of Hope agreed with the previous recommendation that no treatment was needed at that point. The difference was he explained why no treatment was needed, and what would happen if treatment became necessary at some point.
Disclaimer
For more than 20 years, I had a small lump on my back. I had it biopsied during that time, but the results always came back benign. In March of 2009 when I was 58 years old, my wife, Connie, noticed that the lump had changed in size and color. She was concerned.
I went to see a dermatologist near our home outside Columbus, Ohio, who did a punch biopsy of the area. The results indicated that I likely had skin lymphoma. The doctor recommended that I have additional tests performed at a nearby cancer center, which was a highly regarded facility.
At the cancer facility, I had a CT scan, blood tests and a bone marrow biopsy. The results revealed that the lymphoma was not cutaneous, or skin-based, as the dermatologist had believed. Rather, the disease was systemic, meaning it was in my bone marrow, with about 30 percent to 40 percent bone marrow involvement. Some lymph nodes in my abdominal area were enlarged, and my spleen was slightly enlarged. The diagnosis was low-grade B-cell non-Hodgkin lymphoma.
That's it?
When I received the diagnosis, the doctor told me I was at stage where no treatment was needed until I experienced symptoms, such as night sweats, anemia or raised lymph nodes.
Hearing this recommendation, my wife, Connie, and I were a bit shocked. I had blood cancer. They told Connie and I not to worry about it, but how would that even be possible?
When we came home from the hospital, we decided to look for another facility to get a second opinion. Late one night, I found Cancer Treatment Centers of America® (CTCA)* during a search online. I had a “live” chat with a representative, who was able to verify that my insurance would be accepted. Soon, I had an appointment scheduled.
Different care
From the start of my three-day consultation, I could see how CTCA® was different. The way we were greeted and the overall atmosphere were so welcoming. We received a schedule for the visit, found out about activities we could join while we were there and had virtually everything taken care of.
My primary oncologist at CTCA Chicago agreed with the previous recommendation that no treatment was needed at that point. The difference was he explained why no treatment was needed, and what would happen if treatment became necessary at some point.
I also met with a naturopathic oncology provider and a dietitian while at CTCA, both of whom suggested ways to keep my immune system strong. I have been following these approaches for several years now.
No longer watch and wait
In August 2015, I started having chest and arm pains after a walk. Throughout the "watch and wait" period, my red blood cell count and hemoglobin numbers were continuously decreasing. A bone marrow biopsy was scheduled and showed that 90 percent of my bone marrow was now involved. At this time, I chose to begin treatment.
At CTCA, I had four rounds of chemotherapy, combined with an antibody treatment for four months. The side effects from the treatment were very minor, and I continued to meet with my naturopathic oncology provider to discuss ways I could keep my immune system strong. In December 2015, Connie and I received a wonderful Christmas present: I was in remission and no further treatment was needed.
Living my life
Today, I am living my life to the fullest alongside my bride. Connie is my soul mate. We have been married for 45 years, and we plan on many more years together. We love spending time together with our children and our grandchildren. I am so thankful I am in good health after almost two years with no evidence of cancer.
Becoming part of the CTCA family has been wonderful. Connie and I joined the Cancer Fighters® Care Net together. And I participated in a Celebrate Life® event five years after my diagnosis in 2014. We enjoy our trips back to CTCA for my check-ups.
Connie’s story
The beginning of Bud’s journey with cancer was frightening. Skin lymphoma is simple to treat compared to other types of cancer, so we did not do much research of our own after the initial diagnosis.
After Bud had the biopsy, we waited about five weeks for the results. Upon our return for the results, he had additional blood tests and I knew that Bud didn’t have skin lymphoma. I was sure that the cancer was in his whole system. I’m not a quiet person, but the diagnosis left me speechless. I was numb and had a hard time absorbing any information. When the doctor told us that no intervention was needed, I was very concerned.
Bud and I read more about non-Hodgkin lymphoma and came to understand that the disease can be slow to progress, but that it could become life-threatening in time. So, we wanted to explore other options.
I had mixed feelings about CTCA at first. As with any new experience, you don’t know what you’re going to encounter. However, from the start of his consultation, I was totally pleased. The reception was welcoming, we took classes, participated in the laughter club—it was fun and inspiring. The care was professional and also compassionate. The naturopathic oncology provider and dietitian told us what Bud could do in terms of diet and lifestyle changes that might help stop the disease or slow its progression. We were willing to try any intervention that might help, and I was grateful for the experts who were able to guide us in that direction.
Bud’s care team at CTCA always included me in the process. They gave me space to ask questions. No one was ever in a hurry. If there were aspects of his disease that I didn’t understand, they would patiently explain the details over and over. When we were meeting with clinicians, we felt that we were their number one and only priority for that moment. CTCA is an environment of caring.
As a caregiver, I have learned the importance of just being there—to be willing to listen, hold a hand, give a hug, whatever is needed. Support comes in many forms, but mostly it’s just about being there. When Bud was working, I was always making his meals and following his dietitian’s advice about what fruits and vegetables to add and what vitamins to take. I try to provide the support he needs at any time. Through it all, we have remained strong together, united by our faith and our wish to have many more years together and with our family.
The clinicians at CTCA have empowered Bud by being forthcoming with information and sharing it in the most positive light possible. They provide reassurance that if the cancer does progress, they are there to treat it.
I have taken the positivity we feel at CTCA and translated that into our life together. We seldom sit around on the couch watching TV. Instead, we get up and do things, keep active. Bud didn’t retire so he could come home and wait to get sick. We have our lives to live, and we are going to live our lives.
* Cancer Treatment Centers of America® (CTCA) is now City of Hope®, working together to expand patient access to personalized, comprehensive cancer care. Because this patient testimonial was written and published before CTCA® and City of Hope joined forces, mentions of legacy CTCA locations have not been updated in the interest of maintaining the patient’s original voice and story details.