A full year after my radiation treatment

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 johnkuby@gmail.com

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.

19 thoughts on “A full year after my radiation treatment

  1. Hi John,

    My name is Richard Bone, and I was pointed towards your blog yesterday when I attended a Support Group at the Cross. Anna invited me to attend so that I could meet others who are , or have gone through similar surgeries as I did. Your name, and reference to your blog came with high recommendation. I look forward to taking the time to read back through, and would like to thank you for putting it all out there.

    1. Thanks Richard
      The blog is hard to read as a linear series as a blog is not organized that way. Your comment has inspired me to get going with publishing this into a book that will be more useful for new throat cancer patients.
      It is now 70% edited and i am hoping to have it available for download as an e-book on Amazon in a couple of months

  2. John as always your words are inspiring. You’ve kicked cancer in the ass, your recovery is going well (with a lot of hard work), have realized your new normal and are already on to your next journey in Comox….. you forgot to take a break between recovery and your next chapter! Oh right, no quit in me. You certainly walk the talk.

    John everyone needs to know the real truth in the gym. You go hard, not just hard, but give it everything you got (including the maxed out facial expressions). Though exhausted from your last set you had enough in you to calmly ask “so what’s next”. Translation, “I’m not done yet”. What John also didn’t tell you that he worked past the maximum weight he started one exercise with by 34lbs during one long exhausting set. I may have tricked him into it but he did not quit!

    John, you are a role model for role models.

    Put me on the list for one M T shirt and a book.

    See you and Linda soon

    BrYan

  3. Great post John, I’ll be buying the book and the shirts when they are available! Keep working hard and I promise to do the same!! No quit! 🙂

  4. Great blog, great cover for your book, great design for your t-shirts! I cannot thank you enough for your honesty and candor in writing this blog. It is both an inspirational and interesting journey about fighting cancer, and it’s a spiritual awakening as the reality of life changing events take place. You didn’t lose the hope and faith that helped you fight this cancer. Don’t worry about the weight gain – I’ve been trying to gain for two years now and I just stay the same…good excuse to buy new clothes!! HA! I’ll be happy to have your book. Glad you are moving to the West Coast… I think you’ll really enjoy it.

  5. Hi John. really looking forward to your visit in 2 weeks on the way to the coast, Kootenay lake is just like the wet coast , but living is cheaper!!!!! great blog, and a great story, a real inspiration. Wish I could gift you 20 pounds, I would even pay you to take it. Easy on the packing, just give most of the stuff away!!!!! Rick

  6. A great blog, John. Good to hear from you again and in such a positive way. It has been a long and eventful year and your progress is certainly inspiring. Looking forward to hearing of your BC adventures. Much love.

  7. John, it’s great to read your blog, and hear you are doing well. Kudos on the choice for the cover of your book, as I see you standing tall in the face of adversity. As you know I never quit, and I want to thank you for your motto “No Quit In Me” for inspiration to keep going.

    1. Thanks Gerry
      You need a “No Quit in Me” sticker on your bike. I will give you some when we get together next.

  8. Hi
    I posted this blog today and it was supposed to go my Facebook page but it does not seem to me that it did. It only got on my news feed because Linda posted it.
    So I am hoping some of you who have read it will tell me if you found it on my news feed on Facebook or if you got a word press alert. Let me know.
    John

  9. “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.”

    Amen!

    1. Garry,
      Trust an F’n Rider to pick up on the “staying active” theme. You are one of the guys who has inspired me to ride as much as I do. Thank you.
      John

  10. Hey John. Thanks for the update. So great to hear there is still no quit in you. It’s a tough road.

    A few brief comments I’d like to make is that while you’ve discovered your “new normal”, if your journey is anything like mine, you will be discovering you new normal several times over the next few years. Maybe our whole lives. Embrace that. It surprises me every time I realize that something very difficult for me a year ago is no longer as problematic as I had once felt. So my normal is a bit of a moving target. Even my swallow is miles beyond what is was a year out of my surgery. ( I’m coming up to three years now)

    Aspiration is always something you and I will have top of mind for the rest of our lives but what I have found for me is something I know you have always been good at, keep yourself sensibly healthy. That’s step one. I wish I’d understood that for the other 52 years of my life I pissed away living a crappy lifestyle. It seems to me you never did that. So, you’re winning against the odds already.

    Spice was a big issue for me. Very much the same as what you’re experiencing. And I loved spicy foods and I may have mentioned this to you in the past. What I have learned about my own tastes is that it is less “spice” and more to do with the salt content in the spice. A hard thing to regulate when you eat in restaurants of course.

    I have the exact same reaction in my mouth to salt that I have with sugar. It burns.

    But more to spice, I have been able to slowly and carefully re-integrate spice in small amounts by assuring the purity of it all. Or the salt free aspect of it.

    I am occasionally been intentionally able to add drops of Franks Hot Sauce on some items. Just bits, but a nice reminder of what I used to love.

    I find I’m able to push through some of that with relative ease when used in small doses.

    Brushing frequently is something we’ve also discussed and has been a huge help. My teeth are a mess from the radiation but my oral health is the best it’s been beyond that specific damage that has been caused. Of course narcosis of the jaw is something we both have to be wary of but thus far I am winning that one and continue to do whatever necessary to ensure that.

    Whenever you feel phlemy or like your mouth is not feeling the “new 100%”. Brush. It feels better. I carry a kit with me and do it wherever and whenever I need to, to kickstart my mouth again.

    Opposite to you, I sometimes suffer too much saliva. Brushing helps curb that. I also find, as you have that when I’m dry, it has the reverse affect, raising my saliva level.

    A small test for you – monitor what happens in your mouth on those occasions when you are hungry, then you personally do the cooking. If you’re anything like me you may find that exercise of physically creating a meal will help you salivate. Pure animal reaction. When I first realized that it was so refreshing for me to see my system still wants to do it. And now I know for me how to make it happen when nessesary. Not always convenient but when possible try it.

    As to you’re own head space (and Linda’s), I recently downloaded an audio book “The Untethered Soul” by Michael Singer. I listened to that book 8 time through in three weeks. It was life changing for me because there was plenty of times in my journey when I was experiencing tremendous anxiety and never really realized it.

    This book has been instrumental in clearing that stuff from my head and allowing me to live a much richer life. It’s spiritual but more or less spiritual in the yogic tradition. Something you know about. And it has not only profoundly changed me,but my wife read it too and it has made her more comfortable in our new life together. I cannot tell you how much it has help us face the daily challenges and brought us closer than we’ve ever been. I strongly recommend it to both of you. It’s a beautiful meditation on life and how we move in and around all wonders it has to offer. I also recommend his followup “The Surrender Experiment” which is Singer’s life story. Not the same kind of meditation but is so full of context for his first book, it shouldn’t be missed. Plus, being the motivated self starter you are, I think you’d appreciate a story of a hippy who went into the forest to meditate for the rest of his life and emerged as a CEO of the largest online medical billing system in America, just because he refused himself the luxury of ever saying no to anything in his life. He committed himself to saying yes to the universe, always. And the universe guided him. As I grow in my own understanding around this idea, the better my life is. It’s happening without me forcing it. It’s kind of mind blowing.

    A wonderful lesson for us at this stage in our lives.

    You are still so full of inspiring life for all of us to embrace John. And I hope you will find that this journey is just the beginning of something truly incredible.

    In a weird perverse way, I have come to the realization that my cancer has turned out to be the most amazing turn of events for me and I have experience tremendous personal growth as a result that I would have never come to in my former life.

    I still struggle with things around my speech and communication. But I am me and i adapt. I now believe that I am a much better me than I have ever been.

    Good luck on the book John. I would love to add something as a testimonial. Did you want those now or are you going to make the book available to read first (edited) before any of us comment?

    Stay well my friend. And the very best to Linda.

    Gary.

    1. Gary,
      It is so good to hear from you so quickly. Good to know how your feel three years
      in. You are right to point our that there is potential for growth to come from experiences like this. There will probably always be “John, before cancer” and “John,after cancer”.
      My spice issue seems different than yours. I actually like salt now more than i ever did. Strange how our senses can change.

      I have already bought a Kindle copy of “The Untethered Soul”. Will start reading right away and let you know how I feel about it.

      As for a testimonial. Please write what you think others should know about the book that would encourage them to read it. In your case you might want to address those who either have or are caring for someone who has our cancer.

      The book will seem like a reprinting of the blog because that’s essentially what it is. I will not be adding anything except that it will be edited so it reads better. the editing process just finds better ways to get the message across. You would read the book and not distinguish is from the blog except that it is sequential. It is hard for a new blog reader to read sequentially from the first to last blog. The book format will make that easier.

      Let’s stay in touch. I hope to see you when we are in Vancouver.

    2. Thank you so much for this Gary. Our physical symptoms are not the same so your remedies are not always applicable but I still appreciate them.
      As for the life advice for a throat cancer survivor that is always applicable and knowing some of your experiences is instructive and inspirational. I have started reading both of Michael Singer’s books. I have been talking to myself about starting a serious meditation practice for a long time but just never do. The closest I get is a the casual yoga I do every few days. Maybe Michael Singer will inspire me to get going. I listen to the Waking Up with Sam Harris podcasts and am inspired to meditate by knowing that Sam Harris, who is an amazing person, has meditated seriously since his early twenties. There are a lot of impressive people who meditate. Seems like a worthy retirement project.
      Yes, I would really appreciate a testimonial from you and any other of the readers of this blog. Please send your testimonial to johnkuby@gmail.com.

  11. Hi John. Good to see you back blogging again. Lots of big changes in your life right now I see. I don’t envy all the work involved in your big move but the condo looks wonderful so it will all be worth it in the end. Best wishes on getting the book published and for sale through Amazon.

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