Earlier in the year, I was diagnosed with malignant neoplasm, floor of mouth, stage 3. Simply translated, that means cancer.
It started with a lump in my jaw and I had pointed it out to my family doctor last fall, but they decided it was something they can just keep an eye on. As we? inched into the new year, the lump had grown larger and I was beginning to experience pain in my jaw and under my tongue, especially when eating.
I went to the emergency room at a local hospital and their determination was that I had a salivary gland stone that could likely work itself out by using lemon drops. Two weeks later, the pain was increasing, sometimes unbearable, so I returned to the emergency room. They concluded, once again, that is was the salivary gland stone but suggested I see a specialist if things don't start getting better.
A couple of weeks later, I saw a local ear, nose, throat specialist and they referred me to an otolaryngologist. They determined the growth had to be removed and scheduled a surgical procedure and ordered some further tests at the hospital. Initially, the doctor was not overly concerned and said the surgical process, with recovery, would take about 3 days.
However, when the fine needle biopsy results were reviewed by the doctor, she called me to tell me the news. It was determined that I had cancer and the surgery would be more extensive than originally planned. Reconstruction of my mouth would be required.
The surgery took over 8 hours at Florida Hospital, Celebration on March 11, 2014 and that was followed by 3 days in ICU and 4 more days in a standard hospital room for observation.
I don't recall much about what happened during the recovery process in the hospital. A lot of the time was spent just trying to figure things out. It was not clear what was next: the chemotherapy, radiation, the healing. The way I was feeling, I had many more questions than I did before. But I knew I had to somehow regain the faith I would need to overcome this disease.
On March 17, I was released from the hospital and taken home by ambulance.
I then spent a few weeks getting used to things at home. I have the Percutaneous endoscopic gastrostomy (PEG) tube inserted in the stomach for liquid nourishment and for taking medications. A hospice nurse came twice a week at first then once a week until the insurance company (not the doctors) released her. But she was able to show us how to change dressings, how to properly use the peg tube and also advised us of the medical supplies we would need. She also reviewed proper use of the oxygen tanks, the suction machine and the nebulizer.
There were problems sleeping too. I was not able to lay in my bed comfortably because the neck and throat were swollen and when I would lay flat, the air supply seemed to be limited. So I slept in a recliner since I was able to adjust the angle of my throat by positioning my back and head
I was supposed to start chemotherapy and radiation treatment about 4 weeks after surgery, but I had been given an antibiotic for some reactions I was having in my mouth. These evidently caused lower intestinal bleeding and I was taken by ambulance back to the hospital. While undergoing a series of tests, it was discovered that had contracted C-Diff , but that was cleared in a couple of days. I was, however, able to get a much needed colonoscopy while anesthetized. Thankfully, just one benign polyp was found and that was removed.
The following week, the radiation and chemotherapy had to start or I would be falling behind in the recommended treatments. Certainly, I had no idea what to expect, but I was prepared to lose my hair. I even bought a baseball cap that said “Cancer Sucks.”
I was not able to sleep in my bed comfortably because the neck and throat were swollen and when I would lay flat, the air supply seemed to be limited. So I slept in a recliner since I was able to adjust the angle of my throat by positioning my back and head.
This issue almost caused another set-back to the treatment. The radiation therapy staff asked me to lie down on a table so they could fit the mask that I would have to wear for each treatment. They heat the plastic mask then form it to the contours of my face. This mask would then be clamped to the treatment table to make sure once the coordinates were established, I would not be able to move.
I explained that I was unable to breathe while laying on my back, and the doctor in charge told me that I would be able to breathe. I was frightened and was not sure what to do. I asked for a different doctor since I was not comfortable with him. He, in my opinion, would not work with me to solve this problem. I was assigned to the another doctor in that department and after meeting him, I felt much better. He provided me with a prescription for Xanax to help ease the anxiety.
I spent an afternoon laying on my back in the living room, extending the amount of time at comfortable intervals. Each radiation treatment required that remain laying down on my back for about 20 minutes.
Later, I met with the oncology social worker and she took the time to sit with me while the first Xanax dose was settling into my system. She went over breathing techniques and what to do if it felt like I could not breathe.
I can't say that I fearlessly walked into the treatment room, but the staff greeted me with re-assurances that I would be ok and that if I felt something was going wrong, I needed to release the hand grips that pull my shoulders into place. They would notice this through the cameras in the treatment room and they would come to my aid in a matter of seconds. Remember, I remained clamped to the table and was not able to move. The table is also raised about 5 feet so the radiation machine could reach any angle necessary.
My first complete radiation treatment took place on April 14 and my first day of chemotherapy was April 16. On April 17, I had a Bard Power Port surgically implanted in my upper chest. This allowed access for the chemotherapy treatments. The treatment plan called for 37 radiation treatments consisting of 16 fields and chemotherapy treatments once per week.
As the treatments continued, the process kept on getting easier and easier. There were some days that were more difficult than others. This was primarily due to an excessive mucus build-up that occurs from radiation. I always learned, however, that I would still be able to breathe despite this additional blockage. On May 22, I was pleased to learn that the radiation fields were reduced from 16 to 6.
It's odd, but these treatments became a part of me. They provided a comfort zone. Maybe because so many things were going on, so many changes in my body and in my emotions, I felt safe going to the hospital. I would know what was going to happen, for the most part. I felt like these doctors, nurses, technicians were all rooting for me and I knew that they were – and still are.
My final treatment, as I understood it, would fall somewhere around June 14. I was looking forward to this last day and the opportunity for me to ring the “Bell of Finality,” as some call it. It is a bell that the patient rings on his or her last day of radiation treatment. I had never seen it there at Florida Hospital, Altamonte, but knew it had to be there somewhere. Perhaps in an area further away from patients to keep from startling them.
But it was on June 3 that I learned the next day would be my final radiation treatment. While my calculations were wrong, I was not about to dispute hospital.
So, on June 4, we set out for the last treatment then gathered the staff to ring the bell. My wife, Vida, wore nice black slacks with a dressy blouse. We were ready for this wonderful event to take place. This day was historic in my journey and I felt I had earned every bit of it and so did Vida.
After the treatment, and after the CLINAC radiation machine powered down, the staff came in to release me from the table. I was excited and they were excited right along with me. I was asked if I wanted to keep the mask but I had already made arrangements to take it home with me.
I was putting my shirt back on and asked where the bell was so we could take some pictures. They looked at each other and said they had heard that some hospitals have a bell-ringing ceremony, Florida Hospital Altamonte did not.
Disappointment seemed to take over for a moment. I really wanted to celebrate by ringing the bell; the bell that did not exist. Vida came into the room and after I told her the news, she took a few pictures of me with the technicians in front of the table and CLINAC machine that I had spent a small portion of every weekday for the last 7 ½ weeks.
Still invigorated through the disappointment, we decided on the way home that we would have our own celebration and we would ring our own bell. It was fun, it was rewarding and we are glad we did it. But we also were inspired to help Florida Hospital Altamonte create their own bell-ringing program – mostly for the patients, but for the hospital staff too.
Apparently, the bell-ringing tradition started at the MD Anderson Cancer Center in Houston, Texas. U.S. Navy Rear Admiral Irve Le Moyne was a patient with head and neck cancer and installed a brass bell at the main campus Radiation Treatment Center in 1996.
“This is tradition is very warmly received by most patients,” Michael Fox of the MD Anderson Cancer Center said. “Staff and patients recognize it as an opportunity for closure,” he explained. “It is a symbol that patients look forward to as it indicates the completion of that phase in their cancer journey.”
Inscribed on the plaque where the bell is mounted, there is a poem Moyne wrote:
Ring this bell
Three times well
Its toll to clearly say,
My treatment's done
This course is run
And I am on my way!
- Irve Le Moyne
Locally, we learned that Florida Hospital in Winter Park provides its radiation patients with a bell-ringing celebration along with the Orlando Health Cancer Center.
Mike Branch of Orlando had an early stage of prostate cancer. His wife, Vicki, appreciated the bell at Orlando Health (MD Anderson at the time). “There was a certain relief when Mike rang the bell that all the treatment was done,” Vicki explained. “We got to know the different types of cancer that people had and how far some had to drive to get their treatment. It was always great to hear the bell ring because you knew someone finished radiation and that we would soon be next.”
When Maxine Thomas of Longwood read my update on the bell on facebook, she responded: “So that is the bell that we heard ringing throughout Central Florida.” While I tried to apologize, she said that I had earned it and to ring that bell whenever I wanted to. “It is music to our ears,” she said.
So I went out and got my own bell to ring. When I rang it, I felt a surge of confidence, inspiration and hope that I am beating this disease called cancer. Maybe after reading this story, other cancer centers will start their own bell ringing program. Maybe the first will be Florida Hospital Altamonte.