First, you need to know this. I am a person who is mostly unfamiliar with illness. I never get sick. Not a cold. Not the flu. Nothing. At 65, I was on no medications. Once in a while I’d take pain medication for a headache, but first I usually tried relaxation, deep breathing, and hydration. I know that painkillers only mask the problem; they don’t fix what’s wrong.
I was in the gym 4-5 times a week, usually in the pool. I could swim a mile non-stop. Other times, I’d lift weights, do 3-4 miles on the treadmill, drop in for a yoga or aerobics class. I felt good. I was strong.
All that was about to change.
Second, you need to know that I am not a doctor. My posts are, in no way, intended to be medical advice. This is my cancer story, my own experience. There are many different types of cancer, and many different treatments. Your journey will likely be different from mine.
My Diagnosis and Surgery
My cancer made itself known in late 2019. I say made itself known because it had been developing for some time – who knows how long – until it finally became something that couldn’t be ignored. What had begun as a discomfort, coming and going for no apparent reason, bloomed and stayed.
The scope that the ENT performed, revealed problematic lesions on my left tonsil. I saw them myself in the real time. The doctor described what we were seeing on the screen as the camera went up my nose and down my throat. He also showed me the right tonsil, the healthy one, so I could see the difference between the healthy tonsil and the problematic one.
He was a kind, experienced man who treated me with respect, patiently listening to and responding to my questions. He told me what his concerns were, and he admitted to what he didn’t yet know. He would also be the one to perform the surgery to remove my tonsil.
The issue was found on a Thursday at the end of October. The surgery was scheduled for Monday. In between, I traveled to Nashville with my daughter and her husband to attend my nephew’s wedding. I could hardly swallow. I had to skip the champagne toast, but other than that I felt okay.
The surgeon warned me that having a tonsil removed as an adult was very painful, much more so than it is for children. He recommended narcotics for the pain. I bulked. I told him about my high tolerance for pain. I’ve had root canal work and birthed a baby without anesthesia. How could this be worse? He assured me it would be.
He prescribed Hydrocodone for post-surgery pain. I agreed to three days only. After that I switched to over-the-counter extra strength painkillers. The doctor helped determine the dose, which was higher than the recommended dose on the packaging. After I switched, I was not without pain. But neither had the Hydrocodone eliminated the pain entirely. I chose a bearable degree of pain over addiction. I wonder now whether I could have done this without the Hydrocodone.
Note: Hydrocodone is a highly addictive prescription narcotic. Over the past 20 years, deaths from prescription opioid overdose have, and continue to, outpace overdose deaths involving heroin and other illegal drugs. (source CDC)
As it turns out, surgery was the least of my problems. In fact, it was the easiest part. Through the coming months I was to learn a lot about: physical and mental health, our medical systems and practices in the U.S., and the role of patient advocacy. I also learned a lot about myself.
What Came Next
When the lab results came back, my surgeon called with the news. The tumor was a very low Stage One Squamous Cell Carcinoma, responsive to radiation therapy. It was also a cancer that is slow growing and “doesn’t like to move”, in other words, less likely to metastasize.
In the coming days I was scheduled for a CT scan (head and neck) and a PET scan (full body) to determine if the cancer had spread. I also had preliminary visits with the radiation oncologist and the hematology oncologist (chemo doctor). Two specialists, in two different areas of the same building, who I would find out later, never discussed my case with each other.
The CT scan showed signs of cancer in the lymph nodes adjacent to the site of the surgery. The PET scan revealed no additional cancer anywhere in my body. The results were reviewed by the treatment center’s Cancer Board. They recommended both radiation and chemotherapy based on the NCCN (National Comprehensive Cancer Network) guidelines.
Before moving forward with treatment, I wanted a second opinion. My surgeon agreed. He liked and respected the doctor I planned to see, and said he would facilitate access to my medical records. I wrote the surgeon’s comments in my notebook.
“The patient is the boss, not the doctor,” he said. “No doctor should be bothered by a patient seeking a second opinion.”
As it turned out, the doctors did not agree. The oncologist who provided a second consultation did not recommend chemotherapy. He had seen the same scans and used the same NCCN guidelines. He was adamant that radiation should suffice. He also consulted with both my surgeon and the radiation oncologist. His analysis raised more questions in my mind and theirs.
A word about my second opinion. The doctor I consulted was well-known and respected in the community. In fact, he had practiced for many years at the very institution where my surgery and treatment took place. His desire to approach healing from a holistic perspective had led him to go into private practice. At our very first meeting he recommended dietary changes and supplements to boost my immune system. He said to begin immediately, even before my treatments started.
So, now I had even more questions. I returned to talk with each of the doctors involved in my case: the surgeon / ENT specialist, the radiation oncologist, and the hematology oncologist. All but one doctor was understanding and willing to answer my questions. The hematology oncologist (chemo doctor) was not. He had already decided for me.
Remember, “the patient is the boss, not the doctor”. It’s your body. You get to decide what happens to it. You deserve the opportunity to ask questions and get answers. If your doctor is not open to this, perhaps you should look for another doctor. I did.
You may want to discuss your decisions with your loved ones. They will have questions and opinions too. They know you much better than your medical team ever will.
A Word about Advocacy
Find an advocate right away. You are going to get a lot of information, some of which you might not understand. Medical professionals have their own jargon. They sometimes forget that the patient doesn’t speak their language. If you don’t understand, ask.
I was fortunate that my daughter was available and willing to be there for the surgery, the preliminary consultations, and the start to my treatments. She was my other set of eyes and ears. She asked questions and took notes. She heard things I didn’t hear. My journey would have been much more difficult without her.
You should not have to do this alone. You will probably need help. Or at the very least, someone to talk to. If family is not available, ask a trusted friend. Ask someone from your church. Ask a neighbor. People are willing to help.
Take notes. I have more than one notebook that I filled during the months of my treatment. Even now, as I write this, those notes fill in details that I might have forgotten. One notebook was dedicated to tracking my medications. At one point it became a lot to keep track of.
Don’t rely on your memory. Use your advocate and use your notes to help you out.
Don’t assume that your doctors are talking with each other about your case. Chances are they’re not. You need to fill them in. They’re busy. You’re not their only patient. Take your notebook with you. Ask them to repeat things. Let them see you write things down. It helps.
If you’re interested in knowing more, stay tuned. In upcoming posts, I will share more about my journey and what it taught me. Remember, this is my story. It is not intended to be advice for you. If you take away one idea, one question, or maybe a little hope, that’s enough for me.
Do you have a question or comment? Drop it in the comments section. Others might be wondering the same thing. Or, you can send me a private message by clicking Contact.