For future reference, NEVER wait and see.
My sonogram showed that “it” had vascular development. An MRI was ordered but they had no available appointments for two weeks. I couldn’t get in right away and we had a feeling this was serious. At my father’s suggestion we headed to the Cleveland Clinic the following day. Something was amiss.
It was Friday and 5 days had gone by since my visit to my PCP. My father and I saw a couple doctors at the clinic who were confident that this was probably a “non-issue”. As a precaution, an MRI was completed that day. We left the Cleveland Clinic that evening, feeling positive and flew back home.
My second wise decision had been made. Get treated right away. Go to the best place you can find. Trust your gut.
It was a Saturday night when I received the call from one of the doctors I had met at the Clinic. The MRI results were in.
I stepped away from the family and into my son’s unlit room to receive the news. I was told I needed to see an orthopedic oncologist who specialized in musculoskeletal tumors. The mass “seemed” to be growing into the bone and it was deeper than had been expected. This was more serious than had originally been thought. I asked the doctor multiple times if he thought it was cancer. He said he couldn’t say at this point.
I hung up the phone and in the darkness of my son’s room began to cry. My chest tightened, my breathing became labored. I quickly steadied myself so that this situation wouldn’t turn into a full-blown panic attack. I let the stress hormones burn off. Even though the biopsy hadn’t been ordered I knew, without a doubt, I had cancer.
Thankfully, my wife eased my emotional pain and helped calm me down. She wasn’t going to let the C word enter her vocabulary. Paula’s tears would come soon enough though. They just took a bit longer to form.
Saying goodbye to Sofia and Alex was rough that Sunday afternoon. It took everything I had to be strong in front of my children. Like me as a child, Alex suffered from anxiety. I wouldn’t/couldn’t let Alex see me scared and vulnerable. I was fortunate that my parents lived in Asheville. They took the kids so Paula and I could travel to Cleveland to wait our turn in the rotation.
We told the Clinic we would be flying up to Cleveland and living in a hotel until we were seen. It was really important that they knew we were extremely serious and wanted answers as soon as humanly possible.
While we were grasping for clarity we found ourselves confronting confusion and uncertainty. Paula’s anxiety was starting to build. This wasn’t part of the plan.
We passed 48 hours waiting. We went to the Rock and Roll Hall of Fame. We shopped. We lived in a blur. We were going through the motions, but our minds were occupied with fear and concern. Finally we received the call early Wednesday. A slot had opened. We could see the orthopedic oncologist that afternoon.
My pulse was close to 170 when the orthopedic oncologist arrived at our small examination room. After a basic physical examination and without the smallest hint of empathy, the doctor opened up a picture on his computer of my upper arm MRI. It didn’t take a rocket scientist to see that my “it” had become a “something” that was laying waste inside my body. Our knees buckled.
My upper arm was a mess. The doctor’s initial opinion was this was a metastasis of a cancer that we had yet to find. He believed the primary tumor was somewhere else in my body. Metastatic cancer of unknown primary is how we left his office.
Up to this point I had never taken Xanax or any other anti-anxiety medication, but after our meeting with the surgeon, I walked straight to the pharmacy, picked up my first prescription, and swallowed a pill without water. Then the two of us walked into the basement of the Cleveland Clinic main campus building where the biopsy would be performed.
After the procedure Paula and I sat in a small section of the biopsy room waiting area. It would take around a half hour to receive the results of the frozen biopsy.
The phone rang and the nurse said the doctor wanted to speak with me. Cells were malignant. I had cancer. The pathologist believed the cancer to be either lymphoma or sarcoma (little round blue cells).
I’d cried in the house the week before. My tears had come and gone. Now, it was Paula’s turn. This time, I comforted my wife who struggled to keep it together.
Right away, a chest/pelvic CT scan was ordered to see where this was coming from and/or where this cancer was spreading. Paula was slumped in her chair, crying. Quickly she regained her composure.
A nurse came over and asked if we’d like to say a prayer. She grabbed our hands and asked God that the scans show no more evidence of cancer.
The reality of the situation was getting heavier by the minute.
After the Chest/Pelvic CT scan I was led to get a chest x-ray. Once again, we found ourselves in the same area waiting.
It was late in the day, almost night when we called the orthopedic oncologist’s cell phone as he’d requested. It looked as if the cancer was not present in the abdomen or chest (a glimmer of positive news). The doctor felt we were probably dealing with lymphoma or sarcoma.
The next four weeks were awful. The nightmare would not end. Every day things seemed to get worse as the news trickled its way down to us.
We were all about coming up with a military style plan to go after “this” but we didn’t even know what “this” was. Here we were at the Cleveland Clinic, arguably one of the best hospitals in the country, and they were at a loss with my diagnosis.
By now my case had appeared before the Clinic’s weekly tumor board and some of the top doctors in the world were scratching their heads at the pathology results. Throughout this month-long ordeal I had nearly every type of scan possible. Potential diagnoses were neuroendocrine type carcinoma, gastrointestinal tumor, cancer in the membrane of my brain, metastatic cancer of unknown primary, and some type of sarcoma.
Paula and I were at our wit’s end, but still going through our routines, trying to keep our kids as sheltered from the situation as possible. Smiles were hard to come by and felt very rehearsed.
The Clinic ordered another biopsy. This time, a larger section of the tumor was taken out in order to conduct more pathology tests on the specimen.
****Knowing what I know now, I’d have sent this tumor out for genetic testing.****
Paula and I returned home to wait an unbearable wait. On a cold November night while we were sitting at the Laughing Seed Café in Asheville, the call finally came in. It was around 7:00pm and the doctor told us we finally had a diagnosis. I had Ewing’s Sarcoma (bone cancer). We both exhaled and Paula couldn’t stop her tears. We felt relieved “as if” this were good news. “It” now had a name. At last we had a starting point.