“The patient is the boss, not the doctor,” he said.
Those were the words of the surgeon who removed my diseased tonsil. Those words will stick with me for the rest of my life.
Getting a cancer diagnosis is a scary thing. Treatment can be brutal and life altering. The doctors are eager to get to work on your case. Maybe a little too eager?
For two years I’d had a bothersome, periodic soreness on the left side of my throat/neck. The annoying condition came and went. My doctor did the usual; he looked into the throat, did a strep test, couldn’t see anything. Nor could he feel any swollenness in my neck. In time, the annoyance would recede and I’d go on about my life.
The first record I have of this condition was in autumn of 2017. Thanks to the systems that store our medical records online, I was able to find the exact date of the first consultation. My symptoms were minor, but with the holidays approaching I wanted to make sure I didn’t have something I could pass on to others. The doctor did a strep test. Negative.
For two years my symptoms came and went. Two years before the issue manifested itself fully. In late summer 2019 (see part 1), my doctor referred me to a specialist. After diagnosis and surgery, I was ready to move onto the next step in my cancer journey.
Getting Ready for Radiation
While I was still undecided about chemotherapy, I was sure that radiation therapy would be in my treatment plan. The CT scan showed a few bright white spots beyond the area where my left tonsil had been, an indication that the cancer had invaded some adjacent lymph nodes. Still, the area was contained, which was good news.
I was to received five treatments a week, Monday through Friday, for seven weeks. But there was prep work to be done before the radiation could be administered.
Because my radiation would be targeted at my head and neck, I first needed to get sign-off from my dentist. Some patients need some or all of their teeth pulled before radiation begins. Fortunately, I have taken good care of my teeth over the years. A plus. I got sign-off from the dentist; no additional work needed.
I would also need a mask. A mold was made to perfectly fit my face, neck, and shoulders. This was designed to hold me in place during the administration of radiation. This therapy is very targeted. Any movement during the treatment would result in radiation being delivered to the wrong area. Any movement might render the treatment ineffective, while potentially causing permanent damage to areas that were not diseased.
In addition, scopes were done repeatedly so that the doctors could monitor my healing from the surgery to remove my tonsil. My tonsillectomy had been on October 28. The surgeon said it would take six weeks to heal. Four weeks later, on Thanksgiving, I was still on a liquid diet. Even that was painful to swallow. But nothing compared to what was ahead.
My first radiation therapy treatment was December 4. I wasn’t fully healed from the surgery, though I was feeling pretty good. Now the radiation was about to attack the already-wounded area of my throat.
The Participant Patient
One of the things I appreciated most about two of my doctors – the radiation oncologist and the ENT who performed the surgery – was their willingness to answer my questions. As you can probably tell by now, I was not the docile patient. I wanted to be an active participant in my treatment. I wanted to understand the what and the why of procedures. And, these two doctors in particular, appreciated my interest in their area of expertise.
When they did a scope – the uncomfortable but not unbearable insertion of a camera into my nose and down my throat – they showed me what they were looking at on the screen. Early on the ENT walked me along the path showing me what the camera saw and naming each part. I appreciated that.
The radiation oncologist is a young and friendly doctor, obviously still very excited about his chosen profession. He answered all my questions, and never seemed in a hurry to get on to the next patient. I remember how he laughed when I told him how interesting this all was.
“I can see why you chose this field of study. It’s all so fascinating,” I told him. “Too bad it has to hurt so much.” I added.
He and the ENT collaborated. The older, more experienced ENT discussing procedures and outcomes with the younger doctor. They obviously respected each other. They were a team. And they put the patient (me) at the center of the treatment. What a concept! After being bullied by a previous doctor (see part 2), I was so thankful for this collaborative team.
The systems we have built around medical care are designed to be efficient. An entire system of specialists will likely participate in your care: nurses, technicians, dietitians, physical therapists, social workers, etc. Each has a specialized role.
As with any profession, those performing the same jobs over and over, day after day become efficient. But repetition can become boring. Some may lose interest. If your doctors seem to be going through the motions, not seeing you as an individual, you may want to look at other options. This is especially true for patients like me, patients who want to be participants rather than just recipients of their treatment.
Advocacy and Support
At the beginning of my treatment, I felt strong and determined. But I knew that the road ahead would be difficult. So, I needed to be prepared.
My granddaughter came over the day before Thanksgiving and helped me prepare my home office in the most comfortable arrangement. The windows in that room face south, so I would get the winter sunlight. To the right of the windows, we put my desk, where I usually sit to do my morning writing. To the left we placed my overstuffed chair, so I could sit in the sun and read in the afternoon. I was about to spend a lot of time at home.
I notified my siblings of my diagnosis and upcoming treatment, and that I planned to blog about the experience during the coming months. But I quickly found that I was unable to do so. I was too sick and too weak. Taking care of myself quickly became a full-time job.
I was unable to partake in the delicious dishes of Thanksgiving. There were a couple of soups I could sample. By Christmas I couldn’t swallow anything that wasn’t liquified. I enjoyed spending time with family Christmas morning, but needed to lie down and sleep by midday. The festivities would go on without me.
The physical challenges, however, are only part story. Emotional support is equally important. Your family and friends will want to help. Let them. You don’t have to do this alone.
My daughter was my hero throughout the journey. She went to all preliminary appointments and many of my early treatments, until she was confident that I could do some of this on my own. She put up with my exhaustion and mood swings, with patience and grace.
During their Christmas break, my granddaughters sat with me during chemotherapy. Like me, they were fascinated by the process and had many questions, that the nurses were happy to answer. Early on, I was allowed to have companions at my therapy. It was the end of 2019, a couple of months before Covid-19 hit the U.S.
I had chosen to withdraw from some of my activities, not knowing how much energy I would have. I kept working with only two of my coaching clients. We had an established relationship, and I knew they would understand if I had to reschedule appointments. I didn’t take on any new clients, thinking I probably could not give them my best.
I informed a small group of trusted friends, who were all willing to help, if needed. I intentionally kept the group small. People want to help, and they mean well. But I knew that I would need rest, and that I might not have the energy to respond to phone calls and emails. I chose not to share my story on social networks, which turned out to be the right choice for me.
Radiation was only part of my treatment. Shortly after radiation began, I also started my chemo therapy regimen. The two aren’t always done simultaneously, but in my case, it was recommended.
If you’re interested in knowing more, stay tuned. In upcoming posts, I will share more about my journey and what it taught me.
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