When I am out and about these days I often meet people who know about my cancer. They tell me how good I look and ask how I am feeling? To them it seems that, since I look and feel pretty good, I have beat this thing. They are kind of right. I have won the big battle, if that is what it is, but in some important ways the fight still continues.
What I am dealing with is hard to explain in a social setting. So I end up just saying I still have swallowing issues and that some day soon I will have to write blog post to explain my issues and the implications.
This is that blog post.
First the good news!
I have beat cancer, in that I am cancer free and it will likely never come back, and my recovery from radiation is almost complete. Yes, there is radiation damage I will not recover from and there are long-term implications. I will explain after the good news.
I am felling great. My mood has shifted. I don’t seem to have that low grade depression I was experiencing. The counselling helped. Talking it through with Linda helped. Even blogging helped. It also helped to get out on my bike and get riding. Maybe the Oilers winning their hockey games has helped.
I am healthy. My weight is up to 150 pounds at 16% body fat. I could add a few pounds of muscle and I continue to work on that.
I am eating three big meals a day. My swallowing troubles limit some of the foods I can eat but I eat pretty well. Linda is now cooking us meals that will help her lose weight, so I have to supplement her meals to get up to my 3,500 calories a day for weight gain. Bonus! I eat a lot of high calorie foods without worrying about it.
I still do high intensity interval training workouts. 14 minutes each day. One day upper body and the next lower body. All body weight exercises except for a few that are done with dumbbells. Go hard for a minute, rest for half a minute and go hard again, for at total of 14 minutes. it is meant to be exhausting, and it is. This is an exercise regime that works. I can do 36 push-ups now and 2 full pull-ups. That is incredible progress from 6 months ago. when I could only do 4 pushups and no pull ups.
A week ago the single-track mountain bike trails in Edmonton’s river valley dried up and I was able to get out on my bike again. In the last week I have been out 4 times and rode stronger each time. On a whim, I joined a Hard Core Bikes’ Monday Night Club Ride to see if I could cut it and was surprised to find that I rode for two hours. Sure, I was with the slow group but three of the 12 riders we started with dropped out. I didn’t. And I climbed some steep hills.
I have been out with other riders three time since then, and was able to hold my own. I am lighter so it’s actually easier to climb those steep hills than it used to be. But I am not kidding myself, its going to be hard to get my base fitness levels up to where I can ride hard with my friends on the F’n riders. It will take time on the wheels.
And spring is here. The ice is off the river so Linda and I will be out kayaking again soon.
Life is good. But it’s not all good. Here is how I have “not” beaten cancer. My new normal has complications.
Two issues – my teeth and my swallowing. Both are issues caused by radiation. Both are long term and will always be with me. There are things I can do to minimize their impact over time. It’s a good thing there is ‘no quit in me’. The bad thing is I have to form some new good habits.
First the teeth issues. There are two. Radiation to the throat area weakens the bones that the teeth are embedded in. I am not experiencing anything now but apparently over time, I will have problems. The dental people do not talk about “if” I start losing my teeth, they talk about “when”. Any extractions will have to be done at the U of A where it is done in a bariatric chamber.
They took extensive pictures of my face, jaw and teeth when I was first diagnosed and recently took another set. They need them to track all the changes over time.
My friend Freda, who had throat cancer twelve years ago, just emailed me to say she has teeth breaking. She is also having difficulty getting used to her lower dentures. There is ‘no quit’ in that lady though. She still seems pretty cheerful and active at 77 years of age, despite her teeth problems. I hope the treatments are better now and I will not have the teeth problems she is experiencing. I use fluoride trays for my teeth every day. She wasn’t offered them.
My friend Gary in Vancouver, who also had radiation for tongue cancer, recently mentioned in an email that he broken a tooth.
I guess it’s very likely to happen to me too. We will see.
My teeth are now much more prone to decay and cavities. Radiation damage to my saliva glands means that saliva isn’t naturally cleaning my teeth like it used to. It’s not that my mouth is dry all time. I have saliva but I don’t have as much as is as I need. In fact, I chew gum almost all the time to generate more saliva. I am not sure chewing gum is good for me otherwise, but it sure seems to help with saliva.
The gum also keeps my mouth fresh. I hear dry mouth causes bad breath. No one has complained yet.
I also have a teeth cleaning routine I have to follow. It’s time consuming. Every morning and every evening, I have to clean between my teeth with a pick, brush for at least two minutes with an electric toothbrush, then floss. Every evening I do a four-minute fluoride treatment and then have to wait half an hour after that before I can eat or drink. I am also supposed to rinse my mouth after eating with a fluoride mouth wash, but I alway forget. I used to be a “brush quickly twice a day and floss now and then” kind of guy. I am now on a serious dental care regime.
A month ago, my dental hygienist cleaned my teeth and announced that I already had decay showing. That kind of scared me into following my new regime. Fear works.
Now, for my swallowing problems and their implications. Like all the stuff happening in our bodies swallowing is more complicated that we know. I used to just gulp my food down and not think about it. I still eat too fast and rarely concentrate on how I swallow, but when I do, I pay a price.
If the food is a thick and heavy like bread or potatoes, the price could be my throat getting so clogged up that I almost choke. When that happens, I have to tell myself to try be calm and relieve the congestion with that ever-present glass of water. It’s scary when I don’t have water handy. Choking is always unnerving.
This is happening because my natural swallowing mechanisms have been compromised. The food just does not get pushed down like it used to. The nerves in my throat are not sensing what is going on. I can’t always tell that the food is not going down unless I eat consciously and I think about each swallow.
The food that sits at the top of my throat gets caught there for a long time, even after a meal. It can take about 10 minutes of throat clearing, nose blowing, swishing water and spitting to get all the food particles and gunk out of my mouth, throat and nose.
Another issue with the food jammed up in the top of my throat is that food particles find their way into my nasal passages. Then my nose gets runny like I have a bad cold. I blow my nose with that ever-present Kleenex and I get a Kleenex full of snot and bits of food. Gross stuff, I know. I also do a lot of spitting into the sink. Same issue.
Sometimes the food particles in my nasal passages make me sneeze, like a tickle in your nose will do. This is a bad thing if I have a mouth full of food. Fortunately, it doesn’t happen often any more. I am smart enough to catch it.
If the meal has a lot of liquid, like a clear broth soup, or ever the liquid from fruit that is juicy like pineapple, the liquid can slip into my wind pipe during my swallow. That causes me to cough involuntarily. That used to happen a lot but I am more careful now. Also, I have a new swallowing technique to keep it from happening.
About an month ago I had my six month check up and did a bunch of swallowing tests at the Misericordia hospital. The speech therapist, Georgina, had me swallow liquids with a variety of consistencies and captured images of my swallow on what looked like an ultrasound. We watched the images together and she showed me how she interpreted them. What I learned was not good.
Her expert opinion was that I was aspirating more than we had earlier thought. Remember aspiration is when liquid or food goes down the wind pipe, usually liquid. Why does it go down there? My epiglottis, the cartilage that covers the wind pipe as food goes past, has become fibrous from the radiation. It has hardened so now it can’t fold completely over the entrance to my wind pipe. Hence the liquid slipping down.
What happens then? I cough involuntarily. The cough drives the liquid back up and out. Sometimes that does not happen and the liquid goes down to my lungs. According to Georgina, I do not always cough and don’t always know if I am aspirating. The nerves in my throat have been compromised by radiation so they are not as sensitive as they used to be.
What are the consequences? The liquids coming from my mouth are full of bacteria. So there is always a risk of inflammation or infections in my lungs from whatever bacteria the liquids are carrying. I have more bacteria than usual because the saliva does not clean my mouth, just like it does not clean my teeth.
Lung infections can lead to pneumonia. Once you get pneumonia a few times, you become susceptible to getting it more easily. Over the long haul pneumonia kills people. Do I have to worry about dying of pneumonia any time soon? No, but I have to guard against getting it and be hyper alert to getting any inflammation or infections in my lungs.
Georgina also expressed concern that liquids getting into my lungs will cause some of the cells in my lungs to die which will cause hardening in my lungs over time. Not a good thing, long-term.
She painted bit of a nightmare scenario for me. If I am aspirating too much or too often I could end up eating all of my meals through a feeding tube so the aspiration just does not happen.
Am I at that point? No. But she I could tell she was worried for me.
She said, if I was ever hospitalized for any reason and could not sit up straight I would need to be fed through a tube to my stomach. To her, it seemed that serious.
What can I do about it? Georgina sent the results to Anna, my swallowing coach, with instructions to get me back to doing daily exercises to strengthen my swallow muscles and to try change how I swallow. It’s going to take time and effort and it may not work but it’s well worth the try.
Anna seems more confident than Georgina that I can overcome this. Anna has graduate student, Anita, who now works with me once a week. Anita seems confident too.
One of the key things that Anna and Anita do is hook me up to an instrument that graphs the quality of my swallow. The graph shows the breathing sequence and the strength of each swallow. I do an exercise then look at the graph to see if I did it right. That way I am getting feedback on my swallow that I would not ordinarily get from my senses. As I do this more and more I learn to hold my breath as I swallow. I also get sense of what it feels like so I can adapt.
I now have breathing sequence exercise to do 30 times a day and also two muscle strengthening exercises, one for my tongue and another for my throat muscles. I do them 30 times a day as well. The exercises take a full half an hour to do. Not too long, but it’s hard to get into the habit of doing them. Linda will tell you I don’t create good habits easily.
Here are the exercises:
Breath hold: take a sip of water and hold it in my mouth. Take in some air, hold it. Swallow hard, swallow again continuing to hold my breath, then clear my throat and clear it again before I take in another breath. If the swallow does not feel complete then I have to cough hard.
The idea is to hold my breath until the swallowing is done and my throat is cleared so that no liquid gets down the wind pipe. Then I use a cough to drive any liquid out of my air pipe.
I am engaging or closing off my vocal folds, located in my voice box, to stop any liquid that has got past my epiglottis from getting into my lungs. My throat clear is to move the liquid back up out of the wind pipe.
If there is still liquid there, the hard cough will drive it out completely. If I cough involuntarily or I feel a tickle in my throat, it is caused by the liquid being where it’s not supposed to be.
I am supposed to repeat 30 times without either of these things happening, coughing or feeling that tickle. So far, I cough as often as 6 times in 30, and as few as 3. I feel I am getting better.
That is the complicated exercise. The other two are easy to do. I swallow hard 30 times while biting the front of my tongue. This is to strengthen my tongue and help my tongue and the back of my throat squeeze together more tightly when I swallow.
Then I have a little gizmo I blow into 30 times to strengthen my throat muscles. It provides resistance so that I have to blow really hard to get air to go through it. I stop when the air flows. When I can do it easily, we adjust the gizmo so it’s hard to do again. Over time we continue to gradually adjust the gizmo so the resistance gets harder and harder and my throat muscles get stronger and stronger. Anita says there is good evidence that this works to improve swallowing.
Like everything that is good for you, especially exercise, this is easy to do, but even easier to not do it. There are no immediate consequences for failing to do the work. I have to create a daily routine around doing them.
Does everyone with tongue cancer, or radiation to the throat area have this problem? No. Some do, most don’t. I do. This is my long term issue.
Others have different problems. Georgina also tested me extensively for issues with my voice and ability to speak. I am good. No problems talking. That’s a blessing. My taste buds also work well. Another blessing.
Sure, I have saliva issues but they could be so much worse. I have much to be thankful for.
In the big picture, I am doing OK.
I have this retirement and beat cancer party planned for this coming Friday, May 12. That’s exciting. I was worried that too many people were away, and not many of you would come, but that seems to not be the case now. We expect well over 100 people.
Many of those who couldn’t make it wrote nice comments. That makes me happy. I am looking forward to seeing everyone and partying. If you are a reader of this blog, you have probably already reveived an invitation. If I have missed you I apologize and hope you show up.
Cloverdale Community Hall – 9411 97 Ave, Edmonton
Drop by to say hi between 3:00 and 5:30 0r come to party from 7:00 to 11:30 or longer. There will be food and drinks (including a toonie bar) available. There is a playground at the hall, so bring your kids if you want.
Linda and I have summer trips planned in our Sprinter van which we now call “the Casita” (Spanish for ‘little house’). We are spending June on Vancouver Island and in Vancouver for a wedding, then we are meandering back to Edmonton.
After the Folk Festival in Edmonton we head east, visiting folks along the way, spending time in Toronto and Montreal then going to the Maritimes. We will come home via the US visiting friends in Maine and Boston. We will be home in late October I suspect.
Linda and I are looking forward to travelling and we are glad I am feeling up for new adventures.