Going to a cancer institute to discuss radiation being shot into your body is a surreal experience for anyone. Radiation is the same effect of the bombs we dropped on Hiroshima and Nagasaki and even though it’s in a controlled environment there’s nothing natural about that entering your body. Radiation kills the cancer cells but it also kills healthy cells and it leaves its mark so that you know it was there long after the treatments are finished. Like anyone, my mind was swirling but I approached the situation in an organized, I suppose you would say, manner. To prepare for my meeting with the radiologist/oncologist I typed out three pages of questions and left room to write in the answers in between each question.
The Barrett Cancer Center is affiliated with the University of Cincinnati hospital and as such there are many interns working there and although I didn’t realize it at the time the routine was to always send in a physician assistant or student of some level first so that person could get experience and then Dr. Barrett would come in shortly thereafter. On my first visit I had no idea what to expect and as I entered the examination room I have to say I was unimpressed with the cleanliness and overall appearance of the room. I think one would expect hospital examination rooms to be pristine, immaculate, and always contemporary. (As an update, since that time the Barrett Cancer Center has invested a great deal of money updating their facility and it is much nicer now, but those were my honest thoughts at the time.) That observation aside, my primary experience with radiation was going with Mother to the Lancaster Hospital and waiting while she went back for her treatment. Afterwards, Mother would need to rest and she would typically head to the couch, though I wasn’t there every day the way that my siblings who lived in Lancaster were. Still, I didn’t know what happened when they took Mother back into the radiation area, only that it didn’t take long and that it drained her. Mother, though, showed her usual grace and strength throughout that ordeal.
Soon, a Middle Eastern or Asian physician assistant entered the room and he looked inside my mouth, shined a small pencil-like flashlight along my tongue and mouth, and poked around with his finger and an ice cream bar stick. (I’m pretty sure that ice cream bar stick is the appropriate medical term for that flat wooden stick they might refer to as a tongue depressor.) Then he sat down and explained that I was going to get 30-35 treatments and that they would first mark my face so they could line up the radiation tube in the same place every time. He then explained that about a fourth or a third of my face and neck would turn red or raw from the radiation and that I would likely have a dry mouth for the rest of my life. I then asked my many questions and he couldn’t have been nicer answering each of them in detail and thanking me for being so prepared. I didn’t feel good and the news that it would be impossible to go through this without telling anyone didn’t help either. Marks on my face for alignment, followed by redness, probable speech issues, pain from my tongue swelling, and being very tired after about a week of treatments meant I had to share this at home and school.
Then Doctor Barrett came in and he was / is a terrific human being who is very caring, thoughtful, kind, intelligent, and compassionate. As he always does, Dr. Barrett invests a few minutes getting to know his patients first and this quite personable approach appealed to me greatly, first because it is comforting and let me know this doctor cares about me as a person, and second because it is/was my style with my students and their parents, and used to be in meetings I had when I was in sales and marketing. Dr. Barrett asked all kinds of questions about my life and I shared with him that my main concern was with my mother and he proved each time we met that he cared as he helped by answering questions, as well as providing comfort and insight. Dr. Bill Barrett is simply an amazing human being for whom I have the highest regard. I would also ask him questions about his personal life and learned that he is a father, football coach, and avid reader, and we shared book titles that we would recommend to each other over time.
Like the P.A., Dr. Barrett, while wearing a light on his forehead, looked in my mouth, poked around, shined the light all over my mouth, took measurements, and asked questions. Then he referred to the biopsy report and paced around the room. He then said he felt they should take a different approach and do direct high dosage radiation. He said they should do fewer treatments but actually more radiation directly on the affected area of the tongue. The side effects would be different, no marks on my face, no rawness on my face, but lots of swelling on my tongue and I’d get very, very tired. This meant that the plan as described by the P.A. was not what was going to be done, but oh well. Anyway, it was going to be about 18-20 sessions as I recall.
The burden of not sharing this problem and worrying about Mother, plus worrying about the tremendous burden being carried by Dad and my siblings was too much to carry and soon I caved, as I had to. I just didn’t want Dad or anyone to worry and I didn’t want to add to their burden, so I wanted to present it as calmly and clearly as I could. Talk about confused. I didn’t know how to go about this communication part and I no doubt made mistakes. How do you tell your father and siblings who are struggling with the worsening condition of Mother – Hey, guess what, I have cancer, too? It just felt wrong and I felt trapped.
While driving from Cincinnati to Lancaster, a two hour trip I would be making daily to maintain work, get radiation, and spend as much time as I could with Mother, I thought and prayed for a way to explain this without it seeming selfish.
The timing wasn’t right that day so I told no one. The next day, a Saturday, I was at Kroger’s with my sister, Kathy, and was going to tell her but didn’t despite having an emotional breakdown in one of the aisles. The day went by and again I didn’t share. Maybe I should wait a week? Sunday was emotional and I even saw a brother heading to Kroger’s, yet I avoided him because I was so confused and hurting at that moment that I just couldn’t talk to anyone. I just wanted to grab some Ensure for Mother and get home. I’m sure that wasn’t nice but I couldn’t even pretend to have a normal conversation at that point. I later went for a walk in St. Bernadette’s parking lot just to clear my head and spontaneously called my brother, Joe, and dumped it on him. He listened, didn’t overreact, and asked the right questions. It felt good just to finally get this burden of carrying this alone off my chest. Joe could tell his wife, Therese, a nurse, and get her input as well.
Now that I told someone, I had to respect others and share with them as well, but how, when? It turned out that Kathy, Karen, and Joan were heading out for shopping and a maybe a drink at a restaurant and I wanted to catch up with them so I could tell them all at the same time but I was home alone with Dad while Mother was in bed so I decided to stay at home. Adding to Dad’s sorrow and burden while Mother laid in bed fighting for her life is the last thing on earth I wanted to do, but I told myself if the situation were reversed I would want to know. It was an opportunity to tell Dad and I did, though I caught him at a busy time. I kept that discussion as brief as possible and a phone call about a football pool actually helped make that possible. At the time, I thought that call was weird but after reflecting on it the call may have been a blessing because it was a distraction that was needed. Soon, other siblings started to return and the timing wasn’t right to return to that conversation. Dad was very loving and was worried, of course. Dad and I would later talk on the phone so I could give him more details and address his concerns. My goal, though, was to try to limit his worry, but of course that was impossible as Dad was and is my most ardent supporter.
Rather than making a bunch of calls I decided to use e-mail to explain the situation to everyone at the same time. In the e=mail I gave perhaps too many details as is my style, but I also noted that I was okay and that obviously our focus belonged totally on Mother. What was I to do? It was an impossible burden to carry, I was going to have radiation that would affect my energy and possibly my speech. It was impossible to hide, too heavy to carry alone, and delaying anything was not a safe option. I absolutely hated the fact I had cancer and the timing could not have been worse. Just as I hated having to share this with Dad at such a difficult time, I hated having to share it with my siblings because of the pain they were already experiencing, but I didn’t know what to do, and again if it happened to any of them I would be upset if I wasn’t told. In fact, very upset!
E-mail can be impersonal but it was the best available tool to let everyone know the same way at the same time. My focus remained on Mother and the level of emotional pain I felt, just as we all felt, was like nothing I felt before. Ron’s shocking death was as deep a hurt as I had ever felt but Mother’s tragic yet heroic journey was different. I spoke with Ron on the phone quite often and we had some very personal and important conversations and I knew he was very depressed, his death was sudden, shocking, and I felt enormous sadness and also guilt for not helping him more. Mother’s ordeal was a tragic, painful, heroic, and lengthy journey that seemed somehow guided by God. Comparing such painful situations makes no sense because each one is completely personal and different. Suffice it to say we were all suffering like never before and to send an e-mail announcing I had cancer in the midst of that is something I dreaded doing to everyone.
I felt guilty.
Responses from everyone were kind, compassionate, encouraging, uplifting, and loving, the type of responses one would get from people who love him.
For the same reasons I told my family I had to tell my principal in case I would need some time off, though I was committed to not missing a day of work through my surgery and radiation. I even scheduled the radiation at a time of day that allowed me to get it done and then go to school. Because of the early start time of a middle school, the radiation folks were kind enough to put me first, and in fact do so early. I met with my principal, a very kind-hearted woman, and her reaction was rather surprising because she was so matter-of-fact that I was taken aback. Right after I told her I thought to myself that I had made a mistake but maybe that’s the way a person who oversees more than 150 employees has to react. Even days later I got the feeling that some distance was being put between us, but again maybe there is only so much pain a person in that position can take on. I should also mention another teacher had also recently been in to see her to say that he too had cancer. Who knows what else she was told by employees? After all, we all have our problems and she had hers at home, plus 150 employees.
At no time did I tell Mother, and that wasn’t going to happen.
Just a quick point about how people reacted to this. Most people were very caring, concerned, and nice, and they wanted to help. Others started immediately to tell me about their problems, in fact that happened a lot as I had to tell more and more people. The oddest reaction of all was a fellow teacher who essentially acted like it was exciting because she “never knew anyone with cancer before” and she wanted to go with me to radiation so she could learn all about it. I thought that was the absolute strangest reaction I ever could have imagined and I stood there wondering what on earth she was doing. I could go on, but I digress …
Mixed emotions – good and bad – telling people, but it had to be done and on balance it felt good to share. I had done nothing wrong. Never smoked in my life, left youthful excesses in my youth, ran extensively, and generally took good care of myself, though my diet was not the best, I must admit. The doctors repeatedly said that 25% of oral cancer cases occur for no known reason and my case fell into that category. None of it made sense, frankly.
Radiation loomed, and it was time to take the next step in the journey. At least now I was no longer alone. My brother, Joe, said something that I’ve remembered, “You’re not in that bunker alone. There are a lot of people who love you who are in there fighting with you.” That bunker analogy made sense and I’ve always remembered it. It was true, too, because calls and e-mails of encouragement started to come in and every note, every card, every e-mail, every hug meant a tremendous amount to me, and still does to this day.
Comforted by the support, I still sat alone in my recliner, head in my hands, worrying about Mother, and thinking of the possible problems on the horizon.