On December 10, 2009 the cancer that visited my body for a third time was removed and along with it went my tongue. Prior to that I still had about 20% of my tongue with a “flap” taken from my back attached to it to help me eat soft food, drink smoothies, and talk in a coherent but slurred manner. It wasn’t ideal of course but daily trips to Bob Evans for mashed potatoes with extra gravy became routine and I liked them. I also either made my own favorite peanut butter and banana smoothie or bought one at a nearby smoothie store and enjoyed those for a brief while. My speech was slurred and I drooled but there was hope that the drool would stop and that in the not too distant future I would be able to go to a baseball game and have a brat with mustard, or visit my sister’s restaurant and have a slice of pizza. It was an odd goal but it’s what I wanted. I was also confident my speech would, over time, improve and would return to near normal. I was optimistic. The doctors were optimistic and saw no reason why I couldn’t achieve those goals. I even progressed to macaroni and cheese when my brother Joe visited in the summer. All systems were go and I had returned to work and was getting back in the daily routine. Thoughts of a brat and a normal life danced in my mind
Shortly thereafter I got a sore on my tongue and every food or liquid that touched it hurt like heck and I had to give up my mashed potatoes and smoothies. Severe headaches returned and kept me up through the night. Instead of progressing toward my goal, I regressed rather rapidly and severely. I visited my oncologist and surgeons, as well as my dentist to try to find a cure for the headaches. A MRI was clear but the headaches got worse. There were several days I would go to the smoothie store to get a peanut butter, jelly, and banana smoothie to go and I would pray all the way to the golf course that it wouldn’t hurt when I took my first sip. “Today is the day” I would tell myself and I’d feel hopeful anxiety all the way to the parking lot. I remember sitting in the parking lot looking at the tennis center while gingerly removing the lid from the cup holding my hope and joy. I took a sip and …. that day was not the day. It hurt like heck. It felt like pouring hot sauce on an open wound, yet it was just a sip of a mild smoothie. I put the lid back on and set my head against the steering wheel and wondered when I would be able to enjoy something so simple again, let alone a brat or a slice of pizza. I couldn’t sit there and dwell on that so I got out of the car to practice golf before I lost that, too.
It was also increasingly difficult to talk as it hurt to do that, too. The headaches, for the most part, stayed away during the day but at night they became so severe I had to sleep in my recliner and I would essentially crawl to the kitchen in pain to take some various pain medications the doctors gave me. This went on for about 3 months or so, and the various medications had no effect, or had ill effects. At no time did the doctors think it was cancer because of that MRI. Then Dr. Wilson and Dr. Barrett suggested a PET scan and it was scheduled. I had it done and was then advised that it “lit up” showing the darkness of cancer. There was only one option – the tongue had to go.
Surgery was scheduled for mid January, about a month and a half away and that delay concerned me. I had a second opinion lined up at the Cleveland Clinic but it couldn’t happen immediately either. I asked the staff at UC if the surgery could be moved up and they shockingly said they could do it that Friday, December 10, 2009, just 3 days from the date of my call. I have regretted my decision ever since but oral cancer is fast-moving and the fact it had returned to my body was a bad sign and my quick thought at the time was to get it out and get it out now. I agreed to the Friday surgery and for the next 3 days my head was spinning and I was in a fog. Should I wait and try to enjoy Christmas? Should I try to have a last meal? What do I say when I record my last words, as I had planned to do on video? Maybe I should wait and get the second opinion? Should I not have the surgery and just hope it went away and try to enjoy as much life as I could? No, I thought, every concern was trumped by – get it out now before it spreads.
The Thursday evening before the surgery, my dad and my brother Jim came to be with me and take me to the hospital the next morning. I had hoped to just sit and talk and do nothing else but it didn’t quite work out that way and I was mostly tense. Friday morning I recorded my last words, a message to my family and former students that I will post privately on You Tube at the appropriate time. Dad, Jim, and I headed to the hospital in the darkness of the early morning and it was rather quiet in that car. I felt like I should be talking as much as possible to just experience the sense of speech as much as possible before that gift would be taken from me. In just a few hours my life would change forever in ways I did not imagine at the time. I had no idea how hard it would be to communicate after that surgery. With each passing mile as Jim drove us closer and closer to the hospital I felt like I was being led to the gallows and the whole situation was just surreal. If anyone reads this post I am sure they will be thinking, well, you should have done this or you should have done that, but it doesn’t work like that. In the moment it just happens and you go where and do what you’re told or simply where God leads you.
At the hospital the nurses did their usual of asking the same questions 50 times. I had been through that utter nonsense often enough that I made cards with the same information on them: name, date of birth, why I’m there, medications, I did not eat or drink after midnight, etc. and I just handed the cards to each nurse who walked in. That part of surgery is just so frustrating and ridiculous that it boggles the mind but that’s a discussion for another blog. Dad, Jim, and I had some idle chat and Dad joked with the nurses as he always does. Dad and Jim are both better at that type of conversation than I am and they helped lighten things a bit. I laid there clutching Mother’s rosary, as I always did for every surgery, quietly praying and asking her to be with me. She was. I knew what I wanted my final words to be and when the nurses finally came to get me to take me back to the operating room, I grabbed Dad’s hand and said with sincerity, “I love you, Dad.”
After that I chose not to say anything to the nurses or doctors and merely nodded when they asked questions or made idle chatter on the cold ride to the gallows. It wasn’t long before the double doors swung open like the trap floor of a gallows and I was wheeled into the room. It was very cold and bright and there were about 8 nurses walking around prepping for the surgery in seemingly organized chaos. I just laid there looking around and taking it all in. Dr. Patil came in and shook my hand and he nodded to the anesthesiologist. I saw him turn a small plastic pin on a tube connected to my right wrist and I was out.
I would never eat again.
I would never drink again.
I would never speak coherently again.
I would never kiss a woman again.
I would never be held again.
After the surgery there were complications with bleeding and I had to be rushed back in for repairs. I had, in an odd way, looked forward to seeing the nurses who were so nice and helpful after my previous surgery and the feeling of perfect peace that overwhelmed me at that time. Unfortunately, when I awoke the nurse on my case was surly and unkind. The feeling of peace I felt after the previous surgery was nowhere to be found and that disappointed me greatly. I closed my eyes and prayed in hope that it would come to me, but it never did. Nurse Surly didn’t help matters. One of the nurses from the previous surgery was there but she was assigned to a severe burn victim and other than brief visits I didn’t get to enjoy her company. I saw a mirror and regrettably looked at my mouth. I was shocked to see several of my lower teeth missing and I could tell a tooth in the back was gone as well. I wasn’t told some of my teeth would be pulled and while I understood the necessity I was disappointed I wasn’t forewarned.
I won’t go through all of the things that followed over the next few weeks and months that had me at death’s door for that is not the purpose of this post. I really just wanted to say here that I had no idea what lay before me. I don’t know what I was I was thinking. I was advised that a prosthetic could be put in my mouth and I’d be able to eat and drink. (A year later I would learn it wasn’t possible for me even though it worked for others.) I ended up with an extended stay in a nursing home and I was writing on a pad of paper to get my comments out and that was sort of working, though my handwriting was atrocious in part because I was writing so fast. Still, that seemed to be working, or so I thought.
My sister Kathy told me about a text-to-speech app for an iphone and that seemed incredible, so we began to discuss how to get out of my phone plan and switch into an iphone. Poor Kathy tried and tried but AT&T was cold, uncaring, and unkind to her. They said I had to go into the store to sign a form and pay an enormous penalty — knowing full well I was laying in a bed recovering from surgery, unable to talk on the phone by the way. Nice company. Fortunately, I was blessed that Dr. Kevin Bright, the superintendent of our school system, and Amy Spicher, our incredible assistant superintendent who has helped me immensely, visited right at that time and they heard my dad and sister talking about it. Dr. Bright made immediate arrangements to get me an iphone so I could do my job and communicate via text messaging and text-to-speech. I was moved to tears by the thoughtfulness and kindness, as well as his assurance I would be able to keep my job. One or two days later, Dave Hickey, the tech leader of our school system, walked in and gave me his iphone and showed me how to use it. I downloaded the app Kathy mentioned and it was pretty cool and effective and I thought – this will work.
At first text-to-speech was novel and interesting but I quickly learned that precise spelling was important, and creative phonetic spelling was even more important. Text-to-speech is not at all like the rapid texting that teens have mastered. If I typed “LOL” for instance, the listener wouldn’t think I was Laughing Out Loud, but would instead hear, “LULL.” I had to learn that commas or periods were really important to slow down the monotone voice that likes to just run through sentences or paragraphs nonstop at one steady pace. I also learned that correct spelling isn’t always the right thing to do. For instance, “Skype” gets pronounced “Skeep” instead of “Skipe.” It takes time to learn those nuances and the mispronunciations completely destroy the meaning of a sentence. It amazed and frustrated me that the phone wouldn’t say the word properly, but also that a person I was trying to communicate with would get hung up on it and couldn’t understand such an error. People would talk about that one word rather than using the context of the sentence to understand what I was trying to communicate. However, the most frustrating part of text-to-speech apps, and I have since invested in an expensive one, is that in a conversation people simply do not wait for me to type a comment. I have written about this issue before and thought if I typed faster or people became more aware that the problem could be solved. It just seemed that this problem would get corrected somehow over time. I don’t know why I thought that, I just did.
I have been in many meetings and of course countless conversations over the past nearly 2 years and I have come to the unmistakable conclusion that text-to-speech devices are nice and they have their place, but they are a complete waste in the work world where comments and conversations in meetings have to happen fast. People know I cannot talk in a coherent manner and they know I have to type my comments but they just don’t or can’t wait and I continue to either delete comments or not even try to make them anymore. There is a flow to human communication and people in my situation interrupt that natural flow which throws everything off. “Waiting” just does not work in the real world. In an ideal world, maybe, but I work in the real world and text-to-speech does not work.
The odd thing about this is the field in which I work – education. Education is the field of understanding. Education is the field of inclusion. Education is the field where we tell students that everyone’s opinion matters and we teach them to be patient and understanding of kids with disabilities. None of that happens in the adult real world, folks, none of it. I suppose I could could get aggressive and “shout” in meetings that they have to wait but that is not my personality and I refuse to be a burden to a conversation or in a meeting. Amy wants to change all of that and she wants me to talk about ways we unwittingly marginalize people with disabilities, but there is work to do and I am just not comfortable bringing attention to myself. No one intentionally sets out to not include me and I think people just don’t know what to do – it’s not something normal and it’s uncomfortable so we humans choose the path of least resistance in those situations. In all reality, and I am not being hard on myself, why would 12 people in a meeting have to adjust their method of conversation when the one person who has the problem needs to find a way to make it work? Then again, if I happened to be Hispanic, for example, I think people would be more understanding of my inability to communicate in the same manner as others. We teach Spanish, don’t we? It would also be different if I was a person of authority. If I was the superintendent, for instance, and I had the same problem I am certain that whether it was 12 people or 50 people in a meeting it would be handled differently. That’s a societal problem that isn’t going to change, so there’s no use going there.
Text-to-speech hasn’t worked so I have defaulted to trying to talk. Having been embarrassed on more than one occasion I have tried to talk slowly even though what I say is largely incoherent. I also look silly as my jaw continues to deteriorate and shrink, plus my jaw is stuck and I cannot bring it forward. It’s embarrassing. especially when I’m in a meeting. I have been trying to talk to people for nearly two years and for the most part they just do not understand the bulk of what I try to say. The more I talk, for some reason the more tired I get, and drool just keeps flowing. There are certain letters like “G” that I simply cannot enunciate no matter how hard I try. I hear in my mind what I am saying but when people look at me as if I have two heads that is my clue that they have no clue of what I think I am saying. It’s as if we are speaking two different languages, except I am the only multilingual person in the room.
This week I was in a meeting with about a dozen people and wanted to contribute several times but I knew I wouldn’t be understood and I knew the text-to-speech wouldn’t work so I said nothing for an hour. I followed that over the next 3 days with individual meetings and realized the problem of my incoherent speech is worse than I thought. It just isn’t working and I am wondering more and more if I can actually do my job with any level of integrity.
With respect to trying to talk or to use text-to-speech, I think it is time to throw in the towel. I am tired. The only way I can think of to communicate is through these blog posts so I may be writing more of them. It doesn’t matter that they are either not read or lightly read, at least I will get to share my thoughts with me. Many of my thoughts on political, education, or sports issues are contrary to others in my world but they are my thoughts and this is the only way I know how to share them. The other methods, incoherent speech and text-to-speech, have had a long enough trial period to know they are ineffective. The time to throw in the towel on those methods has arrived.
At least I saved my best words for last.