Cancer Treatment Centers of America

Ken Butler

Non-Hodgkin lymphoma (NHL) - Stage I aggressive mediastinal B-Cell

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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My story

Sleepless nights

I had always felt healthy and had never had any serious health issues. Out of the blue one day at work, I began having bad chest pains. I felt a strong pressure, like a vice grip was squeezing my chest and back. I feared I was having a heart attack. My local doctor did a chest x-ray and saw a mass in my chest. He showed it to me and said that although he thought it was likely cancerous, he could not diagnose it based on an x-ray alone. This all happened a day before my 16-year wedding anniversary.

One of my good friends, who is a nurse practitioner and works for a local pulmonologist, got me in with a pulmonary specialist that evening. An immediate CR (computed radiography) scan was ordered. The pulmonologist told us he thought I had lymphoma, but he would be more certain after seeing the scan. The next day, we went back in and he said he was 95 percent certain of the diagnosis, but I would need a biopsy to confirm.

The biopsy had to be done by a third doctor at a hospital near our home. This was the first surgical procedure in my cancer journey. The doctor made an incision and took 35-40 specimens from the mass from behind my breastbone. This time, the results took three to four weeks. In the meantime, I was in shock and felt gripped by terror. I was nervous and unable to sleep. My family did a lot of praying, and found that our faith helped keep us strong.

As the days went by waiting for the results, I started feeling more optimistic and our friends and family kept a positive outlook. I didn’t want to believe that I could have cancer. We interpreted the delay of my biopsy results as indicating that I probably didn’t have cancer.

That interpretation turned out to be incorrect. After an excruciating wait, we finally got the call with the test results: I had aggressive mediastinal large B-cell lymphoma.

A turning point

We live in a fairly small town in Oxford, Alabama, and although there are oncologists practicing locally, we wanted to be sure that we knew all of our options. My sister mentioned to us that Cancer Treatment Centers of America® (CTCA) had a facility in Atlanta, Georgia, just 90 miles from our home. 

I called CTCA and spoke with a representative about my diagnosis and explained that I had no idea what to do next. The man I spoke with told me he would send me some information and explained what I needed to do. I felt so lost at that time, and from that first call, I felt that I could I lean on this person for guidance.

My wife and I went to CTCA for a consultation the week of April 14, 2014. From the moment we arrived, we never felt like we were at a hospital. Everyone there, including the patients, was smiling. They looked happy. Experiencing that atmosphere was a turning point for me. I started feeling better about the road ahead.

During those first few days, I met with many doctors and other members of my care team. They were all onboard to help treat my disease. My wife and I were kept busy during my initial trip, and were very well looked after. During my initial consult, my oncologist ordered a PET scan, I had a port placed and received my very first round of chemotherapy – all in that first week. My oncologist and care team were very aggressive with my care and treatment.

Side effects

My treatment consisted of eight rounds of chemotherapy with the monoclonal antibody rituximab, plus the regimen known as “CHOP.” I received treatment every three weeks for a total of eight rounds over six months. During my first treatment, I was quite terrified, but the infusion nurses checked on me every few minutes to make sure I was all right, and they answered my questions and generally set me at ease.

Going through chemotherapy was the hardest part of this journey, but my care team at CTCA was able to address the side effects that I faced—nausea, fatigue, abdominal pain, hair loss and neuropathy, to name a few. I received anti-nausea medication and pain treatments, as well as other therapies. My care team also got me in with a doctor to help address the mental fogginess I was experiencing that made it hard to concentrate.

Living my life

I am grateful for the caregiver I have in my wife, Selena. We got through this together because we want to be there for our children.

I know now that a cancer diagnosis does not always mean certain, sudden death. I just turned 37 years old, and am optimistic about the decades of birthdays to come, watching my kids grow up and graduate high school and enjoying life. My wife and I are back to doing and planning all the things we love as a family—traveling, attending our children’s sports events and just simply being together.

Everyone coping with a cancer diagnosis should know that they have options. Hearing a doctor recommend a treatment does not mean that you must then proceed with that treatment. There are options for care, options for addressing side effects and options for where to be treated. There are so many choices patients can make.

Selena's Story

The first few weeks

The day that Ken went to the doctor for chest pains, was March 20, 2014, the day before our 16-year wedding anniversary. I was at a pep rally with our daughter when he called to explain that he’d just left the doctor’s office and that there was a mass in his chest the doctor thought might be cancer.

Imagine getting that call and having to get your kids out of school and drive to the doctor to meet your husband.

My mind was racing. I was scared – crying and praying the entire way. I didn't know what to say to our kids. I just told them, “Daddy is sick and we are going to meet him at the doctor.” We were to be leaving on a family vacation with friends to Gatlinburg, TN in a few days, but knew now that Ken and I have to stay home to deal with the tests he needed.

Our children went on the trip with our friends, and we managed to drive up for one night and surprise them before driving back for Ken's biopsy. It was so hard to leave our kids, but we knew we had to keep things are normal as possible for them.

On the inside, we were going through an extremely difficult time awaiting the diagnosis of the biopsy that was done on March 30, 2014. The doctor took 35 or so specimens during the biopsy, but the local pathologists doing the analysis could not make the diagnosis. The results came back inconclusive, so the specimens were sent to a facility in Atlanta for further testing. These were the worst few weeks of our lives. After running several different tests, we finally received the diagnosis.

Solid ground

After doing our own research and hearing about CTCA from Ken’s sister, I was ready to try CTCA. From the moment we arrived, I was impressed. The atmosphere is one that you’re more likely to find at a resort than at a hospital. I was impressed by how knowledgeable, yet down-to-earth, the staff is. We were made comfortable right away. The doctors explained everything, which helped calm our nerves and ease our fears.

Ken's care team immediately went to work coming up with a plan of care. On April 16, 2014 Ken had a bone marrow aspiration and his first PET scan. With the diagnosis confirmed, Ken had port placement on April 18, 2014 and his first round of chemotherapy that same day.  Everything was explained to us along the way and we felt very comfortable with the plan of care.

Support at every turn

Chemotherapy was difficult for Ken. It was hard to watch him go through this time – to see him lying on the couch sick and in pain, with no strength to even get up – but CTCA provided excellent support. They recommended medications and other approaches for alleviating his symptoms. Three days after the port was placed, his arm became red and his hand and fingers grew numb. I called CTCA and was able to speak directly with the surgeon who placed the port. He explained that Ken probably had a minute clot and asked if we could get to CTCA. Once we arrived, Ken received attention and the issue was resolved quickly. As a nurse for 12 years, I can tell you how unusual it is for a patient or caregiver to be able to speak directly with a surgeon. This shows the care and compassion CTCA has for patients.

We got to know some of the staff members on a personal basis during Ken’s chemotherapy treatments. Those who we’d become acquainted with would come talk to Ken during his infusion, even when they weren’t involved in his care. For example, Ken was at CTCA around the time of his birthday, and one of the infusion nurses who we had gotten to know saw it on Facebook and brought him a cake to celebrate.

Occasionally, we brought the children with us for Ken’s appointments. We wanted them to be at ease about the treatments and thought seeing CTCA would help. The staff was phenomenal with them. The children painted, played pool and engaged in other activities. The focus was on the patient, the caregiver and the entire family.

I cannot count the number of times that someone at CTCA has seen me walking through the halls and stopped to ask how I am doing. The staff has given me so much support, and so have the other patients and families there. We keep each other strong and give each other the support we all need. That is why Ken and I were excited to be asked to join Cancer Fighters® Care Net as a way of giving back and speaking with newly diagnosed patients considering CTCA and explaining to them our experience. It is very rewarding to speak with patients and caregivers and let them know there is hope with a cancer diagnosis and to trust the expertise of the top-notch staff at CTCA.

There are days when you want to give up. In those moments, we pray for strength. I always encourage others to do the same, in whatever way works best for them. There is hope in the journey and at CTCA.