It has been a full year since my last radiation treatment so I am writing this blog to bring you up to date on my progress. I have not blogged for the last few months. Linda and I have been very busy, too busy to blog, as you will see as you read on.
My new normal is here. Normal is not what it used to be; but it’s not too bad. I have changed; in some ways for the better and in others for worse. I am proud of myself for having survived and for blogging about the experience but in many ways it has humbled me and left me feeling vulnerable. I am physically weaker and somehow less vibrant. Cancer can do that to a person I guess. My challenge now is to get my vibrancy back.
I have not blogged for a few months, so to bring you up to speed with everything will be hard. I am writing this partially to catch you up on where I am at and partially because I find I miss writing the blog. I miss the writing and I miss having readers. I miss knowing I am connecting with readers out there who care. I suspect I don’t have many readers left, but I have no doubt there are people out there who care. That is one thing this blogging experience taught me. People care.
I quit blogging because I felt the drama of my cancer story was over. I had survived a challenging experience, there was no more drama. The story was over, so why continue.
I also did not have time to write it. I got caught up in turning the blog into a book which is time consuming. It’s still not done. I am only half way through editing it.
I have also been distracted by my rapidly unfolding life. In late May, Linda and I started the first leg of our retirement travel plans by driving our Sprinter van, our “Casita” (little home), to Vancouver Island. The trip was supposed to last a month. We had such a great time, and the Vancouver Island is so nice, we decided to stay. We bought a condo in Comox, BC. A great place to retire. Now we ae moving. The plan is to resume our travelling once we are settled in Comox.
Right now, we are back in Edmonton preparing for our move. We take possession of our new place in late August. There is a lot to do. Purging our belongings, packing, getting a mover, renting out our home here, selling our rental property, trading our two older cars in on one nice one, saying good bye to friends.
We came back in early July to get started and we have been busy, busy, busy. We move out at the end of August and will be in Comox early in Sept to meet our the movers with our stuff. My sister Shenta and her husband Gary are also moving from Edmonton to Courtney, right near Comox, at exactly the same time. They bought a house 10 minutes from us.
Life has just taken over and has left me no time for blogging. But here I am again.
This is a cancer journey blog so let’s get on with that part of my life. It’s a year from the end of treatment so to make the story complete I feel an update is required.
I recently had my 12 months from treatment CT scan and met with Dr. Debenham for the follow up. My throat looks healthy. No signs of cancer.
There are signs I am aspirating and food is getting into my lungs. The spots on my lungs, shown in the last CT scan, which are indications of food having entered my lungs, have receded but are not gone. There are new ones now.
My epiglottis has hardened and my swallow has been impacted. As I have described before, I have trouble getting the food down because of the lack of saliva so often when I swallow I chase the food down with water. There is always a chance I will aspirate (liquid or food going down my air passage) because the epiglottis does not fully cover my air passage as it would have normally.
I am still working with my swallowing coach, Anna. She has me doing exercises that may or may not help develop my swallowing muscles. I did the exercises faithfully for a couple of months but recently not so much. Too busy. I went for testing this week to see if there has been any improvement. They take X ray images to show my swallow in action and watch water go down to see if some escapes into the air way to my lungs. Turns out that it still does. I am controlling it better using techniques from my swallowing exercises but for the most part I can not sense or detect it slipping down the wrong way. When I begin to aspirate I usually choke and cough the water back up into my esophagus, sometimes consciously and sometimes unconsciously. Unfortunately, I am apparently aspirating sometimes without even being aware of it.
So, what are the consequences? The liquid that gets to my lungs is a potential source of bacteria that can cause pneumonia. Pneumonia can kill an old man. Especially if the old man gets pneumonia repeatedly, and the risk is higher the older and more frail the old man is.
What can I do? Three things. First; thicken the water I drink with meals. There are thickeners I can add to my water that makes it slide down past the wind pipe opening with less risk of aspiration. I am now using it and it seems to work. Second; brush my teeth frequently and make sure my mouth is clean despite not having normal saliva levels. Manually do the job that my saliva does. I have found that chewing sugarless gum also helps keep my mouth clean. Third; be physically active so that my lungs are healthy and naturally moving any accumulated wastes. The first two are new aspects of my new normal. The third one is not new but it has become even more important. So, I can’t stop riding my bike, weight training and doing yoga. Not the worst life sentence.
I also have to get myself to a hospital any time I have a fever. A fever could be a sign of infections in my lungs. Something I always have to be aware of.
Other than my swallowing issues I seem to be healthy. I look good. Skinny in an ‘old man’ way, not in an ‘I have been sick’ kind of way. My face has more wrinkles but my eyes still sparkle.
I am eating well these days. I eat everything except spicy foods. My tongue and the skin at bottom of my mouth have developed a sensitivity to spices and they explode in my mouth. Something is going on that Dr. Debenham did not predict and does not know what to do about. I have what are sores or sensitive areas in my mouth that are always there.
Occasionally they get worse or they flare up and bother me but mostly they are not too bad. Spices charge them up so I avoid spices. They are also sensitive to something in normal toothpaste so even brushing my teeth is a bit of a problem. I recently found a new toothpaste called GUM that does not aggravate my mouth. I try to control the sores by gargling with salt water and it kind of works. I am not sure if they will ever go away. It is frustrating but manageable. I think of it as a small challenge compared to the ones I would have had if they had decided to operate and had to take my tongue out.
I am having trouble gaining my weight back. I still weigh 148 pounds. I get up to 150 pounds but I lose it easily and sometimes go down to 146. Tough for most people to imagine, I know, but gaining weight is hard. I rarely feel hungry and eating is a challenge so I am not always prowling in the kitchen foraging for food like I did before I got cancer. I used to feel like eating all the time. Now, not so much. A blessing I guess. I never worry about getting fat.
The weight I lost was not all fat. Of the 20 pounds I lost, much of it was muscle and I can tell by how weak I still am. I have continued to try to exercise every day, either riding my bike or doing high intensity interval training but I am not making much progress in gaining strength or stamina. All I seem to be doing is keeping myself from gaining weight.
When we were on the island travelling I had trouble fitting rides and exercise into my day and since we have been back home I have got back at it but not as hard as I need to.
I can’t keep up with the guys I used to ride with, so I found a new bunch of guys. They are younger, mid thirty to 40-year-olds, but not as fit or experienced as the F’n riders. They are also busy guys so they do not ride as often or as regularly as my old group. I can keep up with them on our rides but it’s harder on me than I think it should be. I do not recover from exertion anywhere near as fast as they do, or as fast as I am used to. Once I get short of breath and feel physically drained at the end of a climb, it takes a long time to recover. I had no idea it would take this long to get my base fitness level back. I am frustrated. It will take a long time to get myself to where riding is more fun than hard work.
I am looking forward to riding in Comox. One reason we chose to live there is that the area has some of the best mountain biking trails in Canada. We are also only 30 minutes from a ski hill. And the winters are temperate so there will be days I can both mountain bike and snowboard. If I ever get my strength back.
My new plan is to become more serious about resistance training. One of the super fit F’n riders, Bryan Fontaine, has started taking me to his gym to train me on how to use free weights. Brian at 58 years of age did 2 sets of 8 pull ups. I can do 2 sets of 2 repetitions. Then he did another set of 14 reps. Really? Super fit. He is an inspiration. The plan is for me to find a gym in Comox and start to muscle up. Byan has also got me using TRX straps for doing workouts outdoors. My goal is to add another ten pounds of muscle. Being muscular in my 70’s would be a good thing.
I have had some of you comment that you sort of follow how my illness has affected Linda’s and my relationship, so here is a comment for you. As I have noted in previous blogs, my illness or my retirement or my advancing age has slowed me down and made me even more inattentive, inconsiderate and disorganized than I have always sort of been. Linda on the other hand is attentive, considerate and organized in spades, so, she is also predictably exasperated with me. i tell her she has to learn to live with people who are not as smart as she is. It’s not our fault that we can’t see what she does. We are coping. I try to be more attentive. She tries to be more patient. We still talk and laugh a lot but I would have to say not as much as we used to. Our problems are pretty minor in the big scheme of things. Right now we are both really looking forward to getting this move over with and being in our new condo in Comox. Coping with the new slower me and our changing relationship is challenging but there is a lot of love and appreciation. We are good together. She still laughs at my jokes.
Back to publishing my book. Yes, it’s sort of coming along but it has been bogged down, first by travelling and now by moving. I am doing the editing using an on-line editing program which is really effective but the whole process takes a lot of time.
Each blog takes a couple of hours to edit. I have done 34 blogs now. By edit I mean clean up the sentence structures and language usage so it reads better. The program helps me do that without losing the flavour of my original writing. It also catches all the grammar errors.
I am also reading a book on self publishing that explains all the different steps along the way. It provides links to all the companies that can help me create a ‘print on demand’ paper back book or an e-book you can buy on Amazon
It’s a complex process that will cost me $5,000 to $8,000 to do it properly. If I can ever get around to it I am thinking of doing a Kickstarter or Indiegogo campaign to raise the money and get the book promotion started. Right now the move is our priority.
I will also need to find the time to promote the book. It seems like a worthy retirement project for me; promoting HPV cancer awareness, early throat cancer detection and advocating for immunization of boys. Boys get head and neck cancers from HPV whereas girls, who already get immunized, are more likely to get cervical cancer.
So far, I have only edited 35 of my 76 blogs. Progress is slow. I have a really good forward to the book written by Dr. Debenham and another written by Anne Ryan, one of you blog readers. I also have a bunch of testimonials but could use more. I need testimonials to entice new potential readers into buying the book and reading it. I want to have two pages of them inside the front cover so they get read when someone opens the book for a sneak peek on Amazon. I would appreciate any of you writing a short testimonial. Just add it to the comments, I will get it. Or you could email it to me at firstname.lastname@example.org
I have also chosen the cover I will use. Here it is:
And as part of the promotion I am going to make a T-shit available to order on line. You will eventually be able to order both the book and the T-shirt on Amazon but I have not figured out how to make that happen yet.
I have also not chosen a supplier for the T-shirt yet but it will be a quality T-shirt when I do.
Here is what it will look like.
I also have “No Quit in Me” stickers to put on bike or bike helmets or on your lap top or the back of your phone.
Thank you to JP King for the great graphic design work. And thanks Michael Kuby for the photo on the book cover.
I am kind of looking forward to seeing the book in print but I am getting apprehensive about going out and promoting it.
I am kind of looking forward to seeing the book in print but I am getting apprehensive about going out and promoting it. Seems like a daunting task, but a worthy one. I just heard on the CBC news last night that the incidences of Oral Cancer have increased by 50% since the year 2000 in Canada, 74% of them are HPV related, 85% of the cases are in men and HPV is the most common sexually transmitted infection in the world. Something worth talking about as I promote the book.
There, I have finally done another blog. I guess I will know soon if I still have any readers. In the coming months, I will find out if there is merit in turning this blog into a book.
Tongue cancer has been an inciteful journey for me. I learned a lot about myself. I endured a lot of frustration. I had a lot of help along the way especially from Linda. It also brought me even closer to my family. Blogging was a therapeutic experience and I certainly appreciated the fact that so many people followed my journey. Thank you all, especially those who wrote comments on the blog or on Facebook and all of you who referenced reading the blog to me in conversation or emails. I appreciated getting that attention when I really needed it.
Going forward I know I will always have trouble swallowing. That, and being skinny is my new normal. I am going to keep on exercising and doing yoga to get my strength back so I can keep on riding, snowboarding, maybe even surfing, until old age catches up to me. It will, but I can hold it off for a long time if I just don’t quit.
I do hope that reading this blog or the book has inspired you and others to not quit. Don’t quit whatever is important to you. Don’t quit being healthy, which means don’t quit being active. I know that I will be snowboarding and mountain biking in my 70’s because I just never stopped being active. I have pretty much always tried to make physical activity a part of my life. I didn’t quit like most guys do in their 20’s when their careers were taking off or in their 30’s when family was too important or in their 40’s when their skills were diminishing or in their 50’s when injuries stop them. I also did not let cancer stop me from being active, and I am proud of that.
Being active is easy to do. Its even easier to not do. Quitting is so easy. Every time you miss a day of not being active you are beginning to quit. Don’t let it happen. Start again the next day. Starting is easy too. If you are not currently active, start now and don’t quit. Keep putting one foot in front of the other. Every day, for the rest of your long life. That’s what I am going to do.
Thank you for reading.