My medical oncologist, Dr. Aithal, presented everything to me in an honest and forthright manner. She offered hope, but it was never any fluffy false hope, just matter-of-fact, real hope. She proposed the game plan for my treatment. I was to receive 30 radiation treatments (TomoTherapy® five days a week for six weeks) and a whole lot of chemo (a regimen that included cisplatin and etoposide). The plan was to shrink and kill the tumor and then, hopefully, doctors would be able to remove it surgically. It was an aggressive plan of attack, and I liked that.
Disclaimer
In the winter of 2009, I began to experience several symptoms and realized something was wrong. I noticed my voice was becoming weak, to the point where it sometimes disappeared altogether. It would get very raspy, and I would cough a lot. The primary care doctor I was seeing treated it as GERD and put me on Prilosec®, which did nothing. I also had pretty bad pain in the upper right side of my back. The doctor thought it was muscle spasms and put me on muscle relaxers for three weeks. This didn't help either. And, I was losing feeling in parts of my right hand. The doctor thought I had a pinched nerve. To help me deal with the numbness in my hand, I saw a pain specialist. I also saw a chiropractor and a massage therapist figuring they could help solve my back pain.
After more than three months of runaround and no relief, I finally asked the doctor to give me a chest X-ray. When he refused, I walked out of his office and decided it was time to get a new doctor. I called a family practice for an appointment, which led to an X-ray. Three weeks went by before they called to say the X-ray showed a “density” on my right lung. Finally, I had a CT scan. This time my wife, Susan, and I didn’t wait for the practice to call us with the results. Susan was on the phone the next morning.
Susan called me at work to give me the news she received: The scan showed a mass the size of a golf ball. They thought it was lung cancer. I didn’t want to hear it. Susan had suspected all along I had lung cancer. She lost her father to it in 1984, and she recognized similar symptoms in me.
It’s hard to describe my reaction to the news. I have to say I felt nothing. It was like a void of emotion, just blank. The career and lifestyle I led weren’t conducive to great health. I was an industrial painter for many years and a smoker for most of my adult life. I quit five years' prior, but it didn’t seem to matter. At this point, what happened in the past was irrelevant. It was all about moving forward and figuring out what I needed to do.
An appointment had been set up for us to meet with a local thoracic surgeon, but it was three weeks away. We felt waiting that long was unacceptable. Susan immediately started to look online for treatment options and other hospitals. She found the Cancer Treatment Centers of America® (CTCA)* website and read about the lung cancer treatments they offered. We looked at the website that night and agreed to make the call to CTCA®. Susan talked with an Oncology Information Specialist named Bob. He provided more information about CTCA and their approach to patient care. I loved the idea that CTCA hospitals were focused on treating cancer. That was important to me.
The next afternoon, Bob, Susan and I had a conference call. Bob told us CTCA checked to see if my insurance would help cover the cost of my treatment at one of their hospitals. He said my insurance was accepted and CTCA could see me at their hospital in Philadelphia for an evaluation in less than a week. Bob also explained CTCA would arrange to acquire my medical records.
I was pretty impressed CTCA had taken care of so many of the details and was ready to see me for a consultation so quickly. But at the same time, I was a bit taken aback because I didn’t know if I was ready and I wasn’t sure of the next steps. I needed to be convinced, but it didn’t take long until I said, “Let’s do it.”
Susan and I made the two-and-a-half-hour drive from our home in Dauphin, Pennsylvania, to CTCA in Philadelphia. We got there first thing one Tuesday morning in June for a three-day evaluation. A nurse explained step-by-step how the three days were going to proceed and what I should expect. She told me my doctors would meet and discuss my case and give me a plan of attack. That gave me hope. There was going to be a plan. It was going to be “This is what we’re going to do to fight it and get rid of it.”
On the second day, I had a PET scan to help my doctors determine whether the cancer had spread to other areas in my body. I’ll never forget how they explained what the test would help them learn. They told me, “In order to fight your enemy, you have to know your enemy’s name and where he lives.” They also did a CT-guided needle biopsy. I learned then that I had stage 3 lung cancer. The tumor in my right lung was what the doctors called a pancoast tumor. The cancer was stage 3 because it had invaded my spine at the T1 vertebrae and a rib.
My medical oncologist, Dr. Aithal, presented everything to me in an honest and forthright manner. She offered hope, but it was never any fluffy false hope, just matter-of-fact, real hope. She proposed the game plan for my treatment. I was to receive 30 radiation treatments (TomoTherapy® five days a week for six weeks) and a whole lot of chemotherapy (a regimen that included cisplatin and etoposide). The plan was to shrink and kill the tumor and then, hopefully, doctors would be able to remove it surgically. It was an aggressive plan of attack, and I liked that.
I went through treatment that July and August. My life revolved around getting better and doing whatever it took to get through treatment. It was hard at times. I lost my hair, my blood counts were all over the place, and my immune system was compromised. Exhaustion was the worst side effect, and the neuropathy was pretty bad. But I never had nausea. My CTCA naturopathic clinician recommended supplements to help me deal with side effects, and the hospital’s pain management team prescribed medications for the pain. When the radiation and chemotherapy started to kick in and shrink the tumor, I had less pain because the tumor wasn’t pressing on my spine and nerves as much. Fortunately, the pain went away and I didn’t need to stay on the pain medications for long.
That September, I underwent more testing so that my doctors could see how well I was responding to the treatment and if I could have surgery to remove the tumor. After a thorough evaluation, they decided surgery would be too risky.
Dr. Aithal knew I was devastated by the news I wasn’t going to be able to have surgery. But she gave us comfort by telling us there were still other options and plenty of reason for hope. She prescribed another chemotherapy regimen with a different drug (Taxotere®). I completed the additional chemotherapy at CTCA and the radiation treatment at a facility that was closer to my home. Three weeks later, I had scans performed. They showed no activity. Only scar tissue remained.
My team and experiences at CTCA
In the beginning, I had no knowledge of what cancer was, or how it was going to affect me. Once I started to see all of the evidence, technology and people that were there to help me and offer every possible method for me to get through it, there was hope. I saw how hard everyone at CTCA was working for me, and I wasn’t about to let them down. I was determined to complete my treatment plan.
Dr. Aithal has a mind like a steel trap. She never had to look at a chart to remember me. She was always very real with me. I thought of her as the captain of my team. My radiation oncologist is incredibly smart, too, and very funny. He went out of his way for me to make sure I got answers very quickly. He gave me plenty of high fives, fist bumps and encouragement.
I went through physical therapy and occupational therapy at the hospital, too. I am especially grateful for one of the therapists who pretty much taught me how to breathe again. I still practice what she preached. The first day I went through physical therapy with her, I could not walk a flight and a half of stairs without stopping. By the end of the three weeks of physical therapy with her, I could walk up an entire stair tower.
I also worked with the pulmonologists at the hospital. They did pulmonary function tests on me to check on my lung capacity and put me on an inhaler. Dr. Lund did a bronchoscopy and needle aspiration to biopsy lymph nodes they were concerned about in 2011. During my checkup in January 2012, Dr. Hoag prescribed pulmonary rehab to help me with my COPD. They continue to be concerned about me and are trying to help me build my lung capacity and maintain it.
The pastoral care team also offered biofeedback therapy, which I found to be helpful for reducing stress and anxiety. By far, though, what helped me stay calm, positive and focused on my fight was the support and encouragement I received from the many people I met at CTCA. I got to know a lot of patients who were in the same boat I was in. We shared meals and stories, and sat next to each other in chemo and talked. We called our experience “cancer camp.” I will always remember those wonderful people.
I also became friends with many of the nurses and staff members at the hospital. I enjoy seeing every one of them when I go back for checkups. My friend Daniella who works at the hospital taught me how to keep my eye on the prize. The outcome of this period of my life depended on how I wanted it to turn out. She said that if I planned on disaster, then disaster it would be. I followed her advice and kept my head up and envisioned the future the way I wanted it to be. Freedom from the grip of cancer was my goal, and I know Daniella’s guidance was a key in my success.
My outlook
I continue to return to CTCA for checkups. I do live with fear the cancer will come back, but I try to think positively. I intend to put cancer out of my life and move on. There’s every reason to be optimistic.
I am fortunate my career was long and fruitful and I am able to enjoy my pension, retirement and life with Susan. We’re coming up on our 40th anniversary, and we’re going to make it to our 50th. We have a happy house. We’ve been to Arizona, Illinois, Florida and Washington. But no matter where we go, we always can’t wait to get to home. We cherish it. We have projects around the house and every spring we look forward to planting our next garden. All of those little things fill 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.