Thank you’s and acknowledgements – part 2

 

The thank you’s continue to the F’n riders, the Pow Pow Crushers, cancer survivors, freinds, neighbours, blog commenters, blog readers:

All the F’n Riders, the gang of 25 mountain bikers, mostly guys over 50 years old, who I ride bikes with for two hours every Thursday night and go for beer with afterwards. You guys were very supportive. Thanks for stopping by our house so often to say hi when I could not join you on your rides. Its nice that I live right beside one of the main bike paths.

Thanks particularly Andy Young, Tim Webber, Gerry Simpson, Nick Croken, Val Letawsky, Bryan Fontaine, Monika Mannke, and Kent Zucchet for occasionally stopping by on your training rides to say hi and have a beer on the patio in our front yard.

Ashley Ryniak, one of the Dirt Girls (mountain bikers) who was kind enough to burn me a CD of tasteful folk, country and bluegrass music.

Val Letawsky for lending me a road bike when I could not mountain bike and Harry McKendrick for introducing me to road biking on a long slow ride out in the country.

Nick Croken for taking some great photographs of me mountain biking in the river valley before I got too weak to ride.

Gary Ogletree for organizing the F’n riders and for continuing to keep me in the loop even though I am not riding with the group. And for making sure we all got those nice new merino wool F’n Riders jersey’s. I wore mine with pride all summer especially when I went for my radiation treatments at the Cross.

Gerry Ralph, a F’n Rider, for printing up the Fuck Cancer stickers and my noquitinme.com business cards.

Steve Martins from Hard Core bikes for getting me a stash of muscle building fish oils from his wife Karen anothe rider who is reseaching the effects of fish oil on cancer patients.

Thank you to all of you.

My snow boarding buddies on the Pow Pow Crusher cat ski trip that I was on the weekend before I was diagnosed with tongue cancer, most of whom sent me very flattering and supportive emails or called me to just to talk. I appreciated that you guys were there for me. You got me feeling good about myself as I started into this scary cancer adventure.

Chip Duffie, the Pow Crusher who first coined the phrase “no quit in John Kuby” when were all in the hot tub after the first day of cat skiing. He was impressed by my persistence after I had fallen so often and struggled to get up on my board to keep up with the rest of the guys in all that deep snow. Thank God I eventually got the hang of it.

To Antoine Palmer who organizes the Pow Crushers and is good enough to include me, an old guy, each year in this annul cat skiing/ snowboarding adventure with his young friends. I am now working to be in good enough shape to join them again for the next trip this coming march.

Antoine again sticking with me and taking me out for some slow mountain biking while I was in treatment this summer. Antoine again and Chase Allen for introducing me to a business broker, John Carvalho, who successfully managed the sale of my business.

Thank you also to John Carvalho, a very talented business broker, who was very sensitive to my situation and did a great job negotiating a successful sale. Thanks also for bring in a great lawyer Ross Swanson to help. Thank you too Ross.

Jesse Hahn, a Pow Crusher, who took me to his yoga classes when I was starting treatment.

Mike Geary another Pow Crusher who turned me on to “The Truth about Cancer” (which did not help me but it was an act of concern and kindness on his part).

Marcus Gurske for staying in touch from Houston and sharing his wife’s cancer story with me.

Pete Wardell, a Pow Crusher, who has kept in touch with me throughout this adventure, coming by to visit, taking me for coffee and sharing stories with me. Pete is a very successful young man who flatters me by frequently telling me that he sees me as a role model and that he wants to be like me when he is 68.

Thomas Beyer, another older Pow Crusher and very successful businessman, who has become a frequent Facebook friend. Thanks for the banter and entertainment Thomas.

Ryan de Milliano, a Pow Crusher, who filmed and edited a You Tube video of my snowboarding shortly after I found out I had cancer. Thanks Ryan. Check it out https://www.youtube.com/watch?v=-YLVpm5cZzI

Judd de Val and Tommy Kalita for being there for me when I started spitting up blood in the hotel on the last night of the trip.

Thanks to all the other Pow Pow Crushers on last year’s trip, especially Joey Hundert, Tommy Kalita, James Knull, Ryan Kohen, and Jeff Fillmore who are core members, there on all the trips. But all the other guys as well for expressing your support when we learned I had cancer. It meant a lot to me coming from guys I came to know and admire on this trip.

To those who shared their own throat cancer or other cancer experiences with us.

Gary Harvey, an established TV director in Vancouver, and a throat cancer survivor, who our nephew, Daniel Arnold, and friend of our boys, Brianne Nord Stewart, both had worked with and felt I should meet. We met with Gary at a restaurant where we spent a couple of hour talking about his cancer experience. We learned how challenging my experience might be, which was scary. But, we also met a courageous and generous man who had survived it and was proof that a person could both survive and thrive through cancer adversity. Gary had lost 90% of his tongue but taught himself to speak well enough to keep directing TV and movies and continue to work to support his family. Gary also kept in touch and gave us caring advice through the blog and emails. Thank you, Gary.

Freda Van Niekerk, a friend of my mother’s.  Freda survived throat cancer a few years ago, and is now a 77-year-old dynamo.  She recently got married, sings in a choir, does charitable work and is generally a bundle of positive energy. We had never met but when she heard about my situation Freda immediately contacted me and has been in touch by phone, email and the blog. She even came to visit me at my mom’s in Winnipeg last summer and brought me a special cake. What a sweetheart.

Mildred Thill, who I knew first as a client years ago, and now as a friend. She had throat cancer when she was quite young, probably when the doctors did not know as much as they do now about how to handle it. Mildred is a slender wisp of a woman with dynamite energy and a giving nature. She is an inspiration.

The surfer, snowboarder, throat cancer survivor from Mexico and California who I have only communicated with via the blog and email. Thanks for assuring me that I can still come back and be a snowboarder and mountain biker after cancer. Send me another email as I have forgotten your name.

Jan, an insightful contributor to our throat cancer support group who had cancer on his voice box but after treatment that included surgery is speaking clearly and eating well. He was scared that the cancer had returned but he now thinks that it was a false alarm.

Gary, from whose I will always remember for suffering through weeks of a strong burning sensation in his mouth after his radiation treatments. No one else experienced that burning. This is an example of how each of us experiences cancer differently.

Al, who seems to be progressing at the same pace as I am from radiation and chemotherapy. Al was told by his surgeon, in the early stages of discovering he had cancer, that he probably had only ten months to live. He was told there was no treatment and to start getting his affairs in order. Fortunately, a month later, the radiation/chemo team took over his treatment and got him to where he is now; back to work and recovering nicely. During that month, he loaded up with medical marijuana to try cure himself. I think, like mine, his cancer was too far gone for that healing process to work.

Manon Aubry, whose cancer experience had parallels to mine and was generous with her advice and enthusiasm for my recovery.

Richard Stecenko, a cancer survivor, who’s comment on the blog made me realize that some day, down the road, I could be one of the people who occasionally realizes that, “Oh, yeh, I used to have cancer”, instead of always dealing with it’s after effects like I do now. In fact, I will always have some after effects but Richard gave me hope when I needed it.

Sandra Stuart, a friend and yoga instructor in Winnipeg. Thank you for the breathing exercises.

The yoga instructor at the Family Yoga Centre, also a cancer survivor, who told me, in a lengthy conversation, that there was a lot to learn about myself from a cancer experience. She also said I would be a changed person when this is all over.  I took comfort in thinking that was a good thing. Maybe it’s not over yet, because I am pretty much the same guy but in a weakened condition. More yoga might help.

Thank you.

To the friends who we have broken bread with over the last while:

Dave Gillespie and Karen Pumphrey, who we shared our first RV experience with in Waterton after we bought the Sprinter van.

John Tansowny and his wife Peggy Arbeau, who we have broken bread with a several times since I was diagnosed. You always treat us like gold. Thank you.

Dwayne Kushniruk and Gay, new friends who invited us over for a fabulous dinner with the Tansowny’s. Entertainment for the evening involved watching all the John Kuby snowboard videos and listening to the CD’s of my favourite songs. I was feeling shitty that week but much better that night. Good people.

Ernie and Beatrice Meili, old friends and business associates from a previous lifetime, before playgrounds, who entertained us for a couple of days this Fall at their home at Candle Lake, Saskatchewan.

Kevin Taft and his wife Jeannette Boman who we have shared dinners with when I have been able to eat. We have a ski trip planned together in Banff for late February.

Catharine Phillips, friend and former business coach, and her husband Russ Phillips for three enjoyable days at their summer home at East Barrier Lake near Kamloops in BC.

Richard Stecenko and his partner Lorna, who served a fabulous diner for Linda and I with Ken Friesen and his wife Sandra Stuart in their charming home in Winnipeg this summer. Richard, Ken and I know each other from high school where I was a jock and they were student council types. It was not until University that I appreciated how cool those two smart guys were.

Phil Haug and Lorna Thomas for their thoughtful attention over the last year and the delicious loaf Phil made. Lorna Thomas is a cancer survivor herself and continually touched base and offered good advice on the blog, on Facebook and in person. Thank you, Lorna.  And thanks for the peace rock. It is on the pony wall in our kitchen.

Deanne Morrow, one of Linda’s long time friends, who made me a beautiful blue quilt with bikes on it. I use it frequently and think kindly of Deanne when I do.

Brent Skidmore and Susan, in Lethbridge, who have stayed close to my situation through the blog, emails a couple of shared meals together. Brent, your contributions have really enriched the blog.

Thank you to all of you.

Thank you to our neighbours in Riverdale:

James Rockey who surprized me when I first told him I had tongue cancer by simply saying, “Ya, it will be tough but you will get over it.” I remember at the time thinking that this a low-key response and later I realized that I wished I had his confidence in me. Turns out he was right.

Paul and Monica Iglinski, neighbours, who inspire Linda and I  every time we see them going out for one of their long walks. Paul is also retired and walks with a cane now as he is recovering from an injury. Thank you also for the fresh mangos Monica.

Rocky Feroe, who calls me the Kubinator, or now Cancernator, She also told me after I had lost 25 pounds that I was still good looking. That was nice of her. Thanks Rocky for the fossilized piece of wood you found on the bank the North Saskatchewan river and gave to me.

Jeremy Baumung, an apprentice electrician who lives next door, for doing a bunch of electrical work for us. Thanks Jeremy.

Rob and Zane who live two doors away and inspire us with their industriousness.

Our kids’ friends who joined us for our little fuck cancer party one July weekend; Kris Currier and his girl friend as well as Scott Zucchet. I enjoyed the mountain bike ride we went on.

To all of you who have been commenting on my blog.

Some of the most memorable commenters were:

Brent Skidmore for being the most prolific.  Brent and I have continued to be in touch since high school. We share a spirit for adventure. Brent is a prolific writer and has had more health issues than the average person so I appreciated many of his comments.

Patty Burke, a friend from University days, who married my best friend Greg Matthes twice before giving up on him. Patty has had cancer and has lost loved ones to cancer so her caring and insight was especially appreciated, as is her friendship.

Aina O’Malley, a friend of Patty’s, who when I was about twenty years old turned me on to reading books and changed my life forever. Aina, also a cancer survivor, is a reader and contributor to the blog.

Greg Matthes, best friend, married to Patty twice back before they knew better. It makes a great story. Greg has been happily married to Kris for years now and they live on a sailboat. Greg only commented a couple of times but charmed me each time with his compliments. I especially liked his story about first meeting me as a smart assed 13 year-old at the hockey rink.

Ken Friesen for his description of watching me skate as a teenager and admiring how fluid it was. I think he compared me to Gretzky but Gretzky was not born by then. Nice to know.

David Wagar, a friend from University, whose one comment was, “It is ironic that the man with the golden tongue would get throat cancer”. It was a nice compliment from the charming and witty, golden tongued David Wagar.

My sister D-Anne Kuby who was always had some caring insight. Thanks for giving me permission to make my blogs as long as I needed them to be.

Drew Hornbien and Jp King, two young guys, family members, who both had stories about me challenging then on mountain bike ride.

Lori Webber, wife of an F’n rider, whose supportive comments meant a lot to me since she is living bravely through a chronic health issue that is much worse than what I am dealing with.

Manon Aubry who paid attention to my issues and always had good advice from her personal cancer experience.

Kristin Gardiner, a good friend, a regular reader, frequent commenter and always a cheerful cheerleader.

Marg Artis an infrequent commenter but regular reader and loyal friend.

Val (Watt) Goodridge a high school friend, and cancer survivor who frequently had something encouraging and supportive to add. Thanks Val.

Jim French and his wife Val from Silver Heights Collegiate days in Winnipeg who have followed this from day one and provided attentive comments.

Joan Arnold always paying attention and frequently offering cheerful encouragement.

Kent Zucchet almost always the first to respond to a new post. Always with an encouraging and supportive comment.

Cheryl Caul, a nurse practitioner, who always had our backs if the medical community got it wrong.

Anne Ryan who always had wise comforting words. Thanks for being there for us Anne.

Jeff Olson, from my Big Toys days, 20 years ago. Jeff not only followed the blog and commented, he made me a member of his adventure junkie group called HARD (Horny, Ancient, Radical Dudes). He even mailed me a HARD T-shirt to prove it.

Brenda Field and Claude Vilgrain two former employees that reached out to me through the blog. Nice.

Ben and Ruth Prins, dear friends for many years, made many heart felt contributions to the blog. Thank you both.

Brenan Prins who contributed and sent me emails that offered prayers and testimonials to the power of faith. Thank you for caring enough to reach out Brenan.

To the many of you readers who are from faith-based communities, thank you for including me in your prayers. As I have said before I may not believe in God but I have some faith in the power of prayer.

Michael Kuby, my son, who commented a few times and often shared the blog on Facebook so his Facebook friends who know me could read it.

Kyle and Kirsten McCrea, Linda’s son and daughter who were regular insightful and caring contributors.

Mikes friends Charli Elber, Steve Babish, Cayley Thomas Haug, Ily Barnes, Bryce Zimmerman and Ryan McFalls for asking about me and paying attention,

Joyce Kuby, my mother, who is 95 years old, made the occasional comment.

Joyce Scott, Linda’s mom, also a faithful reader and contributor

Lorna Rasmussen, Linda’s twin sister who, despite having had her own health challenges, managed to care about mine and was a frequent cheerleader on the blog.

What about Linda? Shouldn’t I thank her. There is not enough space on the blog to mention everything she should be thanked for.  I have been blessed to have her in my life, not just because she took care of everything while I was recovering but because she is such wonderful company. I am looking forward to travelling with her in our retirement. We are going to be that happy retired couple living like nomads.

To the many of you I may have forgotten to acknowledge here, I apologize. I am thankful but I am often also forgetful. Please forgive me.

To all of you many faithful readers who have followed the blog without commenting. I know you are there. There have been many occasions where I meet some of you and find out that you are very familiar with what has been happening with me. Thanks for following.

I have to say that noticeably absent from the commenters are the many people in my customer contact list who I have considered both customer/ clients and friends. I could be that the advice, “never mistake your work associates for your friendship group” is good advice.  I am inclined to think that you are, like I always was, just too busy working to notice that I was not around any more.  We are still friends in my mind.

Let’s end with the funniest comment.

From Havey Brauer, a mountain biker, who sees me fall a lot and often spectacularly.

“You went from a Cat Ski to a Cat Scan! Now of all the things that could take you out, this is the best you could come up with? I don’t think so. You are not going to deny us some spectacular header of all headers that is going to give us the ‘remember when’ story of all time. Where we bury you on the spot and tie a couple sticks together and say ‘He died doing what he loves’. You know, the stuff Legends are made of. So get over this minor setback and then get back to regular programming. No rush though.”

Thank you to everyone for the love and attention. It worked.

We are now almost back to the regular programing.

Sincerely,

John

Many thank you’s and acknowledgements – part 1

It’s been a challenging, eight-month long journey from discovering I had tongue cancer to where I am today, cancer free and almost at my “new normal”.

The list of people to thank is so long that I have to break it up into two blog posts. I will post the second one tomorrow.

Here goes:

If you are reading this then you are one of those I need to thank. It flatters me to know how many people read my blog. I appreciate your interest, caring and attention. The blog has had close to 15,00O visits and over 1,000 comments. Thank you all. Many of the commenters get special mention later.

Thank you to the doctors, nurses and other medical staff who cared for me throughout this process.

The very attentive locum doctor from the Links Clinic who had me do all the tests to determine if I had cancer. She was concerned enough to give me her cell number when I went on my cat ski trip in mid – March last year. I called her on the trip when I started coughing up blood.

Dr. Glen Burchette, our family doctor, who told Linda and I clearly and directly that it was tongue cancer, that it was an ugly cancer but that I would likely survive it.

Dr. Jeffrey Harris, my surgical oncologist, who scared the shit out of us with his talk of surgically removing my tongue. A nightmare scenario that helped to put my actual cancer journey into perspective.

Dr. Brock Debenham, my radiation oncologist at the Cross Cancer Institute, who killed the cancer with radiation, was always cheerful and encouraging, flattered me by calling me a high functioning patient. He also came into the hospital on his day off, a Saturday, to help me with my feeding tube when a resident could not losen it.

Dr. John Walker, my chemotherapy oncologist, whose chemicals kicked the shit out of me but helped the radiation. He was always very open and encouraging. He also thinks enough of my blog to give it out to his new patients. Flattering.

Anna, my speech therapist, who helped me with my swallowing issues. Thank you for your patience with me and for the encouragement. Anna is also the organiser and guide for the support group for ear nose and throat cancer patients. We meet every Tuesday with the other professionals from the Cross Cancer Institute. Very helpful.

Patty, my dietitian, who had so many ideas for keeping my weight up.

Karmen Schmidt, the Nurse Practitioner in the support group who always had a helpful professional advice and understanding perspective on what the patients where going through.

Lindsay, the psychologist in our support group for being there for us.

The members of our Tuesday morning ENT cancer support group, especially Gary, Al and Jan whose struggles with their cancer issues put mine in perspective. It was amazing to witness your positive attitudes in the face of the constantly changing daily challenges of dealing with recovery from radiation treatments. You guys were inspirational.

The support staff at the Cross who keep the atmosphere there cheerful and calm. I am sure all the cancer patients and their families appreciate your persistent optimism. I know Linda and I do.

Kyle, the guy who had to check us in with at every visit. I enjoyed your attitude. Thanks for laughing at my jokes.

The many nurses and technicians that I was helped by at the Cross Cancer institute, the U of A Hospital, the Royal Alex and Misericordia Hospitals who were always cheerful and professional. I like that the nurses at the Cross always had me filling out those questionnaires to monitor our changes. It’s impressive that you ask about both health and psychological issues and even ask if we are experiencing financial difficulties. There was evidence that the doctors actually read them.

Oscar Mora, a nurse at the U of A Hospital, who I bonded with during my first PET scan and I am now Facebook friends with. Oscar, I think I promised to teach your kids snowboarding. Let’s do it.

Lisa Reid-Branconnier, a fellow cancer patient who I met briefly when we were being administered the chemo drugs. She did the inspiring cancer doodle that was on my fridge for so long and is in the photograph series my son Mike did. She is now also a Facebook friend.

Thank you to all of the above.

Thank you to my family for all their support and many acts of kindness. Too many to mention.

The kids; Mike, Kyle, Kirsten and her husband JP as well as Linda who created a special touching appreciation ceremony for me in Vancouver when I first learned I had cancer and before any treatment had been determined. Each of them took turns telling me what they appreciated about me. It was very touching. Many tears. I will never forget it.

My son Jeff, for crying while sitting across the table from me in a restaurant as our new friend Gary, a throat cancer survivor, described in graphic detail the challenges I was about to endure.

All of my family members who joined us for that party in the Air BnB apartment we rented overlooking False Creek in Vancouver. Linda, Jeff and Connie, Mike, Kyle, Kirsten and JP, Sandy and Rita, Callie, Tom and Katrina, Rebecca and Josh, Daniel and Marisa.

My sister Shenta for always keeping in touch with me through phone calls, texts, emails and visits. Also for the many times she came by to do Reiki treatments when I was exhausted and most needed them. Thank you Shenta.

Shenta’s husband Gary for his insights into the world of cancer and for actually reading that award-winning book on the history of cancer treatments, “The King of All Maladies”.

My sister D-Anne in Winnipeg for being present for me right from the start. Reading and commenting on my blog. Especially for two comments. One where she gave me permission to write as much as I wanted to and to not have to make it short and punchy. And the other where she asked commenters to stop giving me advice without considering that it was my experience not theirs that counted here. (or something to that effect). D-Anne also came out to Edmonton from Winnipeg to be with us for a weekend as treatment while I was getting treatment.

My brother Sandy, and his wife Rita, for their genuine concern while Sandy struggled, as he still does, with his own problem; severe tinnitus. I feel for you Sandy.

My sister Callie for the marijuana based healing products and the Phoenix Tears. Also for pointing out that as soon as I got cancer I had to hog all the attention. This reminded her that when she was sick, I was nowhere to be found. It’s true she had a series of very serious life threatening health issues that lasted years and I was relatively insensitive to her plight. Not that I don’t love her. I am just inattentive.

My mother Joyce Kuby, in Winnipeg, who at a healthy and sharp 95 years of age is an inspiration to everyone she knows, especially her kids. She uses an IPad to read and comment on my blog. Thanks Mom. Keep pushing that walker around the outside of the seniors home and out on to the walking trails.

Linda’s mom, Joyce Scott, who at 87, lives in a senior’s home in Lethbridge. Joyce follows the blog on her computer and phones Linda every day. They talk like best friends for an hour or so, which helps keep Linda entertained. Thanks Joyce.

Lorna, Linda’s twin sister, and her husband George who are in the process of moving from Atlanta to Costa Rica. Lorna has had her own health challenges with a heart problem and then a broken ankle but has always took time to check and comment on my blog and to Facebook with Linda and me. See you soon in Costa Rica Lorna and George.

Graydon McCrea, Linda’s ex-husband, and his girlfriend Nan Schuurmans, for caring and especially for bringing over a wonderful beef stew for Linda and me shortly after learning that I had cancer. Graydon gave me a backhanded compliment after reading my blog by telling me how surprised he was that I could write so well. It made me realize that my blog was showing sides of me that many of you might not be aware of.

Freda Wapple, Linda’s aunt, who expressed her concern and support through emails and the blog.

Dr. Glen Zenith, our dentist who is married to Linda’s cousin, for getting me in quickly so he could be sure to do any necessary work on my teeth before my radiation started.

Margaret Langston, another of Linda’s cousins, who really helped me with her “hands of light” treatments before and after my chemotherapy. Thank you for your energy and you skills Margaret.

My playground and recreation equipment business community:

Thank you to staff at PlayWorks and ParkWorks for taking care of business without me, for being supportive, and for following my blog. And for the loyal service. In order of the years they have worked with PlayWorks (some up to 20 years) Lori Vogelaar, Selena Madar, Jenny Harry, Debbie Souve, Pat Zelenak, Jay Silverman, Allie Perrin, Jacquie Lautermilch, Mitchell Taubense, Melodie Ouellette, and Brien Davis.

And to Don Wong who has done the books and been my financial guy, and a loyal friend for over 35 years. He helped me build this business from nothing to what it is today. www.playworks.ca

As special shout-out to Pat Zelenak, our number one salesman and all round go to guy for all things sales and project related. Thanks for everything, Pat. You have been a major contributor to my business success. You now have all the pebbles (inside joke). Some day there will be sales reps and playground designers that snatch them from your hand.

To Jill White, the owner of one of our main suppliers, who bought the business from us. She has been great throughout the whole process. She made it possible for Linda and I to just concentrate on getting healthy without undue worry about the business and our financial future. We could not have found a buyer more suited to making my company even better than I could have.

Serge Morin, the owner of one of the playground companies we represented and a good friend, who flew out from Montreal to Edmonton for a weekend just to be with Linda and I during radiation treatments. We really appreciated that.

Brad Friesen a sales rep from Rubberstone who took the time to come to our house for visit when he was in town after I has sold the business. Nice.

Margaret James and Dave Hilmer, former employees and friends from my days back with Play and Learn who are still in touch with me.

To the many people who work with our suppliers who made special call or or emailed me to express their support.

My long time freinds from Kompan and BigToys community over the last 35 years who are now part of my active facebook communitiy.  Warren Baxter, Jeff Olson, Jay Becquith, Tim Madely, Scott Ramsay, Susan Crawford, Valarie Wiggen, Natialie Haggen Child, Tom Grover, Tracy Themes, Bob Ross, Hap Parker, David Parker and a few others who I am sure I have forgotten to mention.

Ben and Ruth Prins who I know through SofSurfaces and Active Playgrounds. I received some heart felt, helpful, caring and complimentary emails and comments on the blog from both of you. Thank you, I appreciate that you hold me in such high esteem. You do me a lot of good.

Pam Hoffman,  Eric Von Dohlen and Denise Seidle from my days selling Romperland  play equipment. Thank you for being there for me; then and now.

Kurt Krause from Playcraft. Allways a big fan and freind to me and Linda. Thanks Kurt for your faith in me and all of your support.

Dan Christensen from UPC parks. Thanks for the banter.

Thank you all

Part 2 of the thank you’s will be posted tomorrow.

Getting to my “new normal”.

It’s been a month since my last blog. Really nothing eventful has happened so I have not written. However there has been progress so I should be documenting it.

Yesterday, at my support group meeting, a new tongue cancer patient Franz  and his wife joined our group. They started talking excitedly about a tongue cancer blog they had been reading. Of course, it turned out to be mine. Of course I was thrilled.

I am about five months ahead of him in my cancer treatment so they are finding the documentation of my experience very useful. I was pleased to know they were reading it and  finding some use in knowing my experience. We have the same chemotherapy oncologist, Dr. Walker, who had sent them to my blog.

I have been encouraged by othera and am thinking of printing this blog in a book format. Meeting Franz and his wife made me feel that it might be a good idea, so I am going to explore it. My swallowing coach, Anna, says that, even though all throat cancer experiences are different, mine has been very common, so it could be instructive to new patients.

Franz and his wife wanted to know why I had not blogged in a month. To be true to the blog’s purpose, I should capture as much of the experience as I can, even if the long healing process is a bit dull. I have not done that so, here goes.

According to my Radiation Oncologist, Dr. Debenham, it takes about a year from the last radiation treatment to get to the real “new normal”. I am still 6 months away.

Here is a look at my current normal.

I think I will give you a picture that shows the progress I have made. Then I’ll outline the things I still have to deal with now that are not normal to most people. But it might tell us what my new normal, six months from now, might be like.

First the good things:

I am actually cancer free as I said in my last blog.

The spot in my throat that was hit the hardest by radiation is healing well. My doctor was very pleased when he looked at it with a scope yesterday. It is almost healed. I can still feel some pain there but not much. It is still sensitive to spicy foods but that is going away, I think.

I don’t have a feeding tube any more. I can swallow without any pain and I can eat three meals a day. Eating is challenging but I will say more about that later.

My weight has come up from 141 lbs. a month ago, and 136 at the worst, to 147 now. I still drink two bottles of Ensure or Boost a day to keep my calorie intake up or I lose weight.

I am in no pain. I take no medications. My bowl movements are regular. I sleep well, without sleeping pills. I am almost as energetic as I used to be although I do not have the stamina I used to have. That will come.

My facial hair is back. The hair at the nape of my neck is also back and in a darker color. Stylish I think.

My problems with mucus and phlegm have gone away. That was mostly from the healing in my throat. It is still a problem when I am eating but I do not have to spit phlegm into Kleenex all day long like I used to.

And I almost look healthy. Skinny but healthy. Not emaciated like I used to look. My cheeks have filled out a bit.

So, I am thankful for all the progress but here is what I still continue to deal with:

I can taste my food but it’s not the same, especially sweets. Sweets start out tasting good but then leave a bad aftertaste. So, many of the things I used to love to eat are now dead to me.  Ice cream, cake, cookies, even fruit. And wine.

Wine tastes more different than expected. I never was a connoisseur but I drank a lot of wine. That is apparently over. Most throat cancer patients do eventually get most of their normal tastes back it’s not assured. Many never really get their taste for wine or beer back. Hard liquors I don’t know. They are hard on my throat now. So, I will have to celebrate my Thursday night mountain biking rides with Perrier water, my current beverage of choice.

I still have problems swallowing and that may be part of my new normal forever. What happens is that the damage to my throat and a lack of saliva has made swallowing different that it used to be. The food often will not just slip down my throat. It does go down, but not all of it.

Part of every swallow seems to get hung up at the back of my throat and needs to be pushed down with a drink of water. Even then it does not all go down. During and even twenty minutes after a meal there is gunk in my throat that just won’t easily go away. After a meal bits of food keep backing up into my throat and I have to clear my throat often and spit out the phlegm and food bits.

I usually do that when I am brushing my teeth, which I have to do after every meal just to clean out my mouth and my teeth. I don’t have enough saliva to naturally clean my mouth and teeth. I do a lot of brushing and swishing to clean away the bits of food that cling to my teeth and inside my cheeks.

I often have a bad taste in my mouth after eating so the brushing and swishing helps with that problem too. I follow a meal with sugar-free Trident gum that gets the saliva flowing and improves the taste in my mouth. We bought some expensive Xylitol gum ($11.00 a package) specifically for generating saliva but Trident seems to work just as well.

Apparently, the saliva glands at the upper part of the mouth that secrete a thicker mucus-like saliva don’t get damaged by tongue cancer radiation but glands at the lower part of the jaw that secrete a more liquid version of saliva do get damaged. Sometimes they never heal. If they heal, it is not until a year after the last radiation treatment.

The biggest problem I have with eating is aspiration; liquid and sometimes food that heads down the wind pipe not the esophagus. It happens a few times every meal, depending on the food. When it happens, I cough, hack, sputter and sometimes sneeze and sometimes end up spitting food into a Kleenex. By the end of a meal bits of food will have migrated into my nostrils which often makes me sneeze and blow my nose to clear the food bits and mucus. Its like a I have a sinus problem or a cold right after every meal.

I have not been able to predict for sure when this is going to happen. It seems to occur when the meal is dry and I have to follow my chewing with a swig of water. It also happens when I am eating stews and soups that are quite moist. The food least likely to bother me are pastas. The noodles go down easily.

Will this ever go away? Apparently, it likely won’t. It could if I am lucky and maybe doing those swallowing exercises will help me control the problem. What I was told is that the sensors in my throat that would ordinarily identify food going the wrong way and block it are damaged. In my case, damaged enough that the sensitivity will likely not come back. The other guys in my support group do not seem to have the same problem. This is where my cancer is different from the norm.

I am lucky though because my saliva problem is not as bad as some of the others in my group. My experience of “dry mouth” is not as bad as most.

I do drink a lot more water than I ever did; with meals and to clean out my mouth. I have taken to Perrier water because I like the fizzy sensation.

Oh, I forgot to mention that the risk of food getting into my lungs is that the food in my lungs can cause infections and potentially pneumonia. Serious stuff.

One thing that we know from radiation is that my teeth and oral health will always require more attention. I have to brush after each meal and before I go to bed. I also have to use fluoride trays once a day. These are the same as your dental hygienist gives you when she cleans your teeth, except I do it every day. That is to protect the enamel and to prevent cavities. If I ever get serious tooth issues I have to have extractions or any surgery done in a bariatric chamber for protection. Besides treating decompression sickness, hyperbaric oxygen therapy helps to heal serious infections and wounds that won’t heal as a result radiation injury.

Also, there are often problems with gums and soft tissue around the teeth. Something to have to watch out for.

The doctors and health professionals have made it clear from the beginning that they would be there to help me with my dental issues and it looks like we are tied to Alberta Health Services for the rest of my life.

Alberta Health Services also provide us with free counselling as well. I may just take them up on it. Frankly, I am not as happy as I should be considering that I just beat cancer and that I sold my business and am comfortably retired with nothing to complain about.

On a day to day basis I am strangely a little bit sad and out of sorts. Not that I am really concerned about it but I do notice it. I think it’s a retirement thing. Feeling a loss of purpose. I am hoping that five weeks in Costa Rica and two weeks in Panama will perk me up.

The other issue for me is that I may never get as strong and fit as was. That feels like a real loss to me. I enjoyed the level at which I could mountain bike and snowboard. I sure hope I can get my fitness level back. It is probably just a function of how hard I want to work.

Right now, I am on fitness program that involves swimming every second or third day as well as some resistance training and yoga to prepare me for learning how to surf. Surfing has been on my bucket list for a long time and since we are going to Costa Rica, now is the time to learn. Besides, Linda wants me to be active where it is sunny and warm not where it is cold and snowy. She deserves to do her holidaying near beaches and flowers.

I am not optimistic that I will ever get any good at surfing but I want to give it a shot. If I become a good enough to ride beginner waves that will satisfy me. Surfing is very hard and the most demanding part is actually paddling out to catch the waves. I may not be fit enough for much of that.

Shortly after we get back from Costa Rica, Linda and I are planning to go to Sunshine ski resort near Banff with friends for a few days so I can snowboard. I need to prepare for the cat ski/boarding trip I have planned with the young guys I went with last year.

I should be in good enough shape to go even if I can’t exactly keep up. Anyway, its good to have goals to work towards like surfing in January and snowboarding in March. It keeps me doing my daily workouts.

I am getting stronger. I did 16 good push-ups yesterday. Up from 5 or 6 a month ago.

One more change to add to my new normal is my voice is lower and deeper. That would not be such a big deal but it has happened around the same time as Linda has had to start using hearing aids. She often can not hear me because her hearing aids don’t pick up my voice in it’s new range. It’s irritating for both of us but we shall overcome.

And one other note. As a lifetime reminder that I survived this cancer I now have a second belly button. When they took the feeding tube out it left what looks like a belly button above my real belly button just below my rib cage. Weird.

Ok enough about me.

The next blog is going to be an acknowledgement and thank you blog. It’s composed in my head now and I will send it in a few days.

Also, my photographer son has a photo series of the cancer experience that he wants to share. I will blog about that soon too.

Great News!

We got the CAT Scan results from my doctor fifteen minutes ago.

I am Cancer Free.

The spots in my lungs seem to be infections probably caused by food going down my wind pipe. The larger one has shrunk to half its original size. Cancer does not shrink. The smaller ones are arranged in a pattern that is typical of infection.

I still need to do another scan wen we get back from Costa Rica in late February to make sure the infections have cleared themselves up.

I have not been worried.  The doctor had told me they did not think it was going to be cancer.  But then again you never know.

Meanwhile I am now in a hurry to get my feeding tube out. I discovered this week that after getting the tube out there is a risk of getting a hernia if I strain that area of my stomach. They wanted me to avoid sports and heavy lifting for 6 weeks after getting it out. So, in order for me to take surfing lesson in Costa Rica I have to take it out this coming week. It is being done on Thursday, two weeks ahead of schedule. They cut me some slack because I have been eating full meals for a while and they trust me. And I have gained a bit of weight. I am up to 144.5 lbs today.

As there is no risk of a hernia right now I am going snowboarding at Marmot Basin near Jasper on Sunday and maybe Monday . Linda and I are winter camping in the Sprinter Van.

And on Saturday, tomorrow morning, I am signed up for a beginner surfing lesson at the big wave pool at West Edmonton Mall. I watched some guys surfing there a few days ago. It looked like fun. The waves appear tto be the size of the waves at a beginner beach in Costa Rica , but more predictable. I think I can do it.

I am feeling unstoppable now. We will see.

Cancer Free, but I will be feeling the effects of the cure, radiation therapy, for a long time. Small price to pay. I am thankful.

How far I have come and how far still to go

It’s been 12 days. Seems like a long time. Nothing dramatic. Slow steady progress.

This blog is about how far I have come with reminders of how far I have to go:

I have kicked the morphine by reducing the amounts slowly. Took nothing yesterday or today. It took a few days to get my head to the point where I noticed that I was essentially off morphine. When I got there I actually had the conscious realization that the “old me” had returned.

I noticed that my mental energy and sense of humour were back. I could think again. It was like putting on my glasses. What was so blurry has become clear and sharp again.

Also, I have made big strides with eating. I am back to where I was two month ago and even better. I am eating with far less pain. On Monday, November 14 I started counting down the 30 days I need to go without using my feeding tube. If I do, they will remove it.

So, I am on Day Six of eating everything through my mouth. I have to demonstrate that I can do that without losing weight. I started this at 141 lbs. and I am now at 142.8 lbs. My goal is to get up to 150 by Christmas. I am doing that by eating three meals a day and drinking two Ensures. Gets me up to over 2,000 calories a day.

However, before someone invites us out for dinner, let me warn you that I still have trouble eating. The pain of swallowing has gone but still find it difficult to swallow. I have to make gurgling sounds and swallow hard with every swallow. It’s work and slow going.

I also have to follow most every swallow with a drink of water unless I am eating soup. I have come a long way in terms of pain but in terms of actually swallowing effectively I have a very long way to go.

I swallow but the food does not all go down. Bits and pieces stick in my throat and I have to bring it back into my mouth with some phlegm and spit into a Kleenex. This goes on after the meal too. I have phlegm at the top of my throat most of the time so I always need Kleenex nearby. Yuk.

Also, I still have a tendency to aspirate which makes me cough but am learning to control for it. I have come a long way and I am pleased with my progress, but there is a long way to go and I get frustrated.

Same with my stamina and strength. Yes, it’s coming back but I have a long way to go. I still tire easily but I recover much more quickly. When I was on morphine I would take and hour to recover from an hour-long walk. Now I barely notice that I was on a walk.

So, my stamina is improving. And I am stronger. I do a weight training program that takes me half an hour to do. I do most of the same exercises that I did before cancer but I now use 15 lb dumbbells and I used to use 25 to 30 lbs.

I started at four push-ups and am now up to eight. A long way to the 40 I used to do but it will come over time. I am optimistic about eventually getting my base fitness level back even though it will take a long time.

Linda and I went swimming today and I did laps, with plenty of rest between them, for 20 minutes. Again, I am pleased but I know I have a lot of work to do to be ready for the surf lessons during our holiday in Costa Rica in January and February.

I am signed up for a week of lessons already and our accommodations in Tamarindo are booked so I have to be ready. Two hours a day of lessons. Don’t worry, this is beginner lessons on very beginner waves. I will be safe. And I am a good swimmer.

If I can’t do it that’s OK but I feel compelled to try. My exercise program is keyed to surfing fitness. I will be strong enough but I am worried about my stamina. I think I have to get out riding on my fat bike and go swimming more often.

Do I have any pain? Yes, my throat still hurts where the radiation was the strongest. It’s going away but not gone.

Do I have the saliva problems they predicted? Yes, but not the dry mouth that some guys get. My saliva glands sort of work overtime so I get more saliva than normal. Not a big deal but it’s part of why I always need Kleenex with me.

Everywhere I go I have Kleenex and a plastic bag with me along with a water bottle. I frequently have to clear my throat and spit, then wash my mouth with a quick drink of water. Partly this is a swallowing problem but partially it’s my saliva glands.

Even though I seem to have excess saliva, my teeth don’t get cleaned naturally, like they normally would pre-radiation. So, I still have to swish my mouth clean with water after every meal and brush frequently.

This saliva problem may never go away. This is an irritant for me but it could be much worse. I am grateful that I do not have dry mouth.

What about my taste buds? Yes, I seem to be able to taste everything. Sweet is not as sweet but it used to leave a bad aftertaste now it doesn’t. Again, something to be grateful for.

How do I look? Well, better than when I was on morphine but I have hollow cheeks, wrinkles I never had before and jowls and a turkey neck that are a result of radiation. All head and neck patients get the turkey neck. Apparently, it goes away eventually. The hollow cheeks will fill out when I gain weight. I look very skinny now but that too will change over time.

Did anyone ever wonder about my sex drive? It went away, but it’s back. That is a very good sign that I am recovering. I am thankful.

Can I drink wine or beer? No, it’s just too hard on my throat. I drink water, apple juice and that’s about it. Not even coffee. Oh, I also I chug an Ensure twice a day for the calories and protien. No pleasure in that.

What else? Linda is getting tired of looking after me. The morphine days were hard on me but hard on her too. And when I came out of it I was pretty used to being looked after so I just carried on being lazy. That did not go over well. Good thing we are capable of getting over these difficulties.

It is interesting that at my most recent support group meetings, Linda was there along with two other wives, it became very clear that the wives were also victims of their husband’s throat cancer. They were expected to care for us and they are OK with that. But our symptoms and needs are constantly shifting, so it’s hard to be a caregiver. It is also damned hard to cook for us. That was the most common complaint.

I have the CT scan coming up on Thursday. The doctor needs to confirm that the two small spots on my lungs are from food that I aspirated into my lungs and not another cancer. We will let you know when we know.

The good news – the Oilers are back on track after losing a few games. And you just spent 10 minutes reading this without having to read or think about Donald Trump.

Quick update and a heartfelt thank you

I was at the Cross Cancer Institute recently so there are updates to share with you.

The first visit was with my swallowing coach Anna. She is actually a speech pathologist but her job is to make sure throat cancer patients do not lose their ability to swallow. I am “not” one of her better patients.

I aspirate as I swallow. Too much, water and, maybe food, goes down my wind pipe. She is concerned. The concern is that food can cause infections in the lungs and it gets complicated and dangerous. Pneumonia. I experience the aspiration as coughing at the end of a swallow and have been learning to keep that from happening with techniques my swallow coach showed me.

The last CT scan showed small spots in my lungs which we hope is nothing serious and will have gone away by now. It could be an infection due to aspirated food. Remember it could also be another cancer but we are pretty sure that it’s not. We won’t actually know until my next CT scan on November 24.

She tested my swallow with something that graphs the motions on a chart. She was pleased with the progress but still concerned. I still aspirate but not as bad as before. She warned me that I have to do my exercises regularly or my swallow may not improve. If I leave it too long, the throat gets ridged and won’t get better, ever.

I am now committed to doing 30 swallow exercises a day. Like everything good for you – easy to do, even easier to not do.

After meeting with Anna, I went to my head neck cancer support group session. This is with a few other people with tongue or throat cancer who meet once a week with a Nurse Practitioner, speech pathologist, a nutritionist, and a psychologist and other support people from the Cross.

It’s interesting to see how all the participants, who are mostly three or four months out of radiation, struggle with similar but not the same issues. We all have similar cancers but all in slightly different locations in the throat and tongue. Because the radiation hits each differently and we all react differently neither of us has the same experience. But the similarities are there and the struggle to stay on top of it is similar. It is interesting to share our stories.  I find it therapeutic and others shared the same feeling in the group yesterday. It is good to be in the company of others who you know are actually experiencing  some of the same shit you are going through.

One thing I learned today is that the Cross Cancer Institute puts more resources into patients recovering from head, neck cancer than any other cancer patient group. This is because this cancer is the hardest to recover from.

It is not often a fatal cancer and maybe it’s not as painful or hard to cure as some other cancers but, due to where it is located and the pervasive effects on the rest of your body and your life, the extra care is warranted. The psychologist explained that the effects of this cancer are varied and many of the losses a person suffers are quite consequential, not just to the person’s health but their total sense of wellbeing.

Life is hard, but its harder when you have tongue cancer. Weight loss, strength loss, feelings of weakness, exhaustion, the experience of pain, swallowing problems, loss of appetite, taste bud changes, dry mouth, choking, mucus management issues, mouth sores, foul tastes, nausea, vomiting, burning sensations, constipation, inability to talk, facial changes, turkey neck, sleep deprivation, fear, memory loss, mental functioning and concentration issues all compound on each other. Any one of these is hard to deal with but for us they just keep on coming.  You get one thing under control and all of as sudden another appears or it comes back a month later. It seems relentless.

Think about this. Much of anyone’s social life revolves around eating and drinking. We are always sharing meals or drinks of some sort. Throat cancer patients are cut off from the pleasures of eating and the social life that goes with them.

That was one of the first things I noticed when this happened. No more beers with my biking buddies. No more wine in the evening with Linda. No more diners with friends.

If you were a physically active person, like I have been, chances are you are not going to be again for a long time. It is a real personal loss. A loss of identity. I was a mountain biker. Now I am not. Yes, I may be again, but there is a fear that I never will be and it is going to be very hard to ever get that base fitness level back.

There is also the challenge of dealing with the new person you have become. Someone less than you are used to being. That is hard for me. It’s also hard on relationships or can be. Thank God I have Linda who is so understanding. But it is hard on her too. She does not have the life she had.

Hence the big team of specialists available at the group support meetings.  We need all the help and the support that we get from them and from each other. Sharing our experience in a supportive environment and in the company of professionals who can answer our individual questions is invaluable.

There is also an extensive program to help us protect and save our teeth that is very comprehensive and free. Remember that radiation to the head and neck area is very hard on teeth. As I was dealing with my immediate frustrations like throat pain or mouth sores I was always forgetting that the radiation has put my teeth at risk. Now that I am actually well into recovery, I had better get on that.

I am very thankful that the team at the Cross is there for me.

I am also thankful that all of my family and friends have been so supportive. I am not surprised at the support I have from my close family, especially my sisters and brother and, of course, our kids, who have been great. However, I did not know I had so many friends.

That is one of the good things that has come of this. I did not know so many people would care. Many of you have stayed connected with me or become even more connected through visits, phone calls, emails, thoughtful deeds, and, of course, this blog. Thank you all for the love and the attention. I am very appreciative.

This experience is teaching me how compassionate some people actually are and how “not that” I have been in my life. I am not a bad person and I don’t beat myself up for this failing but I now know that whenever one of my sisters has been sick (and they have had some very serious illnesses) I was never really there for them.

Which, of course, means that for any of you or anyone who has not stayed connected with me through this illness; you are all forgiven in my mind. I would have probably have done the same if it was you who was sick. I know we will still friends be next time we meet.

My sister Callie actually poked fun at me the other day saying, “Sure, now that John has cancer he has to have a blog, let everyone know and get all the attention. Where the hell was he when I had my ulcerative colitis and heart surgeries?” Sorry Callie, Shenta and anyone else I have failed to be there for when they needed me.

Linda laughs and says it’s sure a good thing it’s me who sick not her. That is so true. It’s also true that my life has been blessed in so many other ways that this cancer can be considered a blip. Another frigging learning experience.

I am learning fast God. Leaning fast. Can you let up now? This recovery has been going on way too long.

No more drama.

Nothing dramatic is happening. Just slow steady boring progress.

The thrush is gone. The facial pain is gone. I am weaning myself off the morphine slowly. I don’t have enough pain to warrant being on morphine but the doctor has me I getting off this stuff very gradually given my recent problem.

I am down to about a third of the morphine I was taking before. I still have pain in my throat. The doctor says that the spot where the thrush was causing the pain is where I got the heaviest dose of radiation. It is going to take a long time to fully heal – anywhere from a couple of months to six months.  He used the scope again and we saw the images of my throat. It was very healthy looking except for that one inflamed patch on the side of my throat that hurts.

I only feel the pain on the left side of my throat now. So, as long as I tilt my head and channel the food or water along the right side I can swallow without too much pain. It looks awkward, holding my head parallel to the table as I eat, but at least I am eating. Oh, and I still have to gurgle as I swallow to keep the food from possibly going down my wind pipe.

It’s ugly but it is progress. I just started eating again a few days ago and I still have to do three tetra packs of Resource 2.0 through the feeding tube in order to keep my weight up. Remember I have to go for a month without using the feeding tube before they will take it out. My goal now is to have it out in December. That would mean eating three meals a day and still gaining weight one month from now. This morning I ate deviled eggs for breakfast along with yogurt and a cup of berries (frozen berries are my treat these days) and tonight I had wor won ton soup.

I am now at 142 pounds, up from the low of 136. Remember I was around 146 to 148 a month ago. I look gaunt and I feel weak, of course. I tire very easily after a walk or doing anything around the house. Not that I ever do much or ever did. But I recover very slowly and have to nap or rest after any exertion. Even if we go out of the house for a while I usually have to rest when I get home.

So, I am not doing much, watching the Oilers and the Trump Parade. Trying to read but it’s kind of hard to concentrate. I am still a bit brain dead.

Linda has been great at looking after me but she decided a couple of days ago that, since I am on the mend, she can take a break.  She drove down to Lethbridge a couple of days ago to visit her mother. Good for her. She deserves a break from me. I will be OK on my own for a week. And Mike, my son who lives in the basement suite, is here.

Even though I am getting better I am frustratingly slow at everything and as I have said before, I am even more scatterbrained and more forgetful than ever. It is frustrating for Linda and I sympathize. Frankly, it’s very frustrating for me too. We laugh about it but really it’s no laughing matter. I worry that I will never get my old self back.

I can hold a conversation for a while and I can be fairly social but it does not take much to wear me out and make me feel tired.  Any set back weakens me. The tired feeling pervades my neck and shoulder muscles so I take naps and do yoga exercises. Deep breathing helps too.

Linda and I have continued to walk and sometimes I can go for an hour or so but then it takes me an hour to fully recover. My doctor says that there is good evidence that exercise speeds recovery so he encourages me to exercise but not overdo it. I struggle with finding that border. Yesterday I did a light weight resistance workout and felt good but today I am taking a complete rest. Tomorrow I will walk again.

Now that the thrush pain is gone I was supposed to get back on my “care for my teeth” regime. This involves a fluoride treatment once a day as well as brushing and flossing 3 times a day.

The fluoride hurt my mouth when I had the thrush (yeast infection) but now I have canker sores that hurt when I use the fluoride. If it’s not one thing it’s another.  Baking soda seems to be helping with the canker sores.

While I am on a roll and doing all this complaining, I am just going to take the opportunity to also add that, for some reason, I also have a bad taste in my mouth all the time. It just won’t go away. Maybe it’s from the morphine, I don’t know, or maybe left over from the thrush.

It could also be from four months of eating through a feeding tube. I didn’t have any issues with the feeding tube before but, recently, I have felt bloated, especially during the evening and later at night. Not like I am going to throw up mostly just unsettled stomach. I burp a lot to relieve the pressure. Gross.

Remember part of our pact is that I write about what is happening, not what is entertaining. If I feel like this I am writing about it. See why Linda had to go see her Mom.  I am not in serious pain any more, I am just uncomfortable and no fun to be around. I do see that on paper it looks like whining. Oh, well.

One thing I have learned about this slow recovery is that no matter what is happening today it’s going to be different tomorrow. It will be different and, from what I can tell, I am on a good trajectory so likely it will be different better. Maybe I am a little too impatient.

What have I missed? Social notes. We are staying home for Christmas. And we are going to Costa Rica for most of January and February. looking forward to hanging out with Lorna Linda’s sister and her husband George who just moved there from Atlanta.  I accuse them of being among the first to escape the US before it all falls apart under Trump. (I am writing this the day before the election.)

My friend Antoine told me about a beach in Costa Rica, near a town called Samara, where the waves are perfect for old men and children to learn how to surf. Predictable waves, shallow water. I can’t wait to give it a go. Since Linda wants sunshine and flowers in the winter I have to find a new sport. Maybe surfing will be it.

In the meantime, I can’t wait till the snow gets here so I can get on my snowboard again. I don’t think it will be too strenuous as long as I don’t push myself.

Pray for more steady progress.

 

The worst night of my life

Last blog I ended by wondering what my issues would be in this my next blog. I never would have guessed.

The day after the last blog post, last Monday, my facial pains all of a sudden disappeared, and the thrush was virtually gone. No explanation except that the drug for thrush is working.

I still felt weak and out of sorts but the severe facial pains were gone so I was optimistic since progress was being made. No facial pain meant to me that I did not need the morphine any more, so I just quit taking it.

Big mistake! You might think that I am an educated man and should know better. Even Linda didn’t. She thought I wasn’t taking enough morphine or for long enough to worry about withdrawal effects.

We really never discussed it together or with anyone else. I just quit taking the 10 ml every 2 hours that I had been taking.

We even mentioned having gone morphine free for the last two days to our Nurse Practitioner at a group session on Tuesday. Not one said anything about going off morphine too fast. How were we to know?

Well, here is how I found out. This description won’t do the experience justice but I will try. It was painful – like drug withdrawal is apparently supposed to be.

I am thinking of reading some of those classic drug addict books like Under the Volcano to see if my coming off morphine is anything like what those real drug addicts experience. I am sure I got a taste of how bad it can be.

According to what Linda just read, withdraw symptoms start 36 hours after you stop taking morphine. In my case that was exactly true. The main symptom; vomiting, throwing up, hurling, puking. And it does not matter if there is anything to puke up. Dry retching, dry heaves and hurling are all part of it.

It started just before bed time. Sometimes, like when you have been drinking and you throw up before bed, you can count on getting a long night’s sleep. Not this night. It just kept coming and coming.

After each event I would lie there, trying to calm down, practicing my deep breathing. Mostly I just tossed from side to side and massaged my muscles trying to get comfortable.

Eventually I would fall asleep only to have to once again sit up quickly, lean over the edge of the bed and hurl into the bucket again. I think I was getting sleep in short maybe15 minute bunches and the pattern just kept repeating itself; no relief.

My stomach had been emptied after the first few events so mostly it was dry retches. Violent dry retches that hurt.  So I started drinking a bit so I had something in my stomach to throw up. That helped a bit. It did not hurt as much and the experience was more rewarding. At least I could see the black bile coming out.

Linda stayed up with me all night trying to comfort me and see how she could help. But there was not much she could do other than be there, which I appreciated.

The puking is only a part of the experience. There were chills and sweating as well as the usual body aches and pains but none of that was very severe. I did not seem to have a high temperature. At one point I actually reminded myself that this could all be much worse. Note to self: never become a real drug addict.

One unusual thing I kept noticing is that once I finished retching I could not just lay there comfortably. I could never find a way to lay that did not aggravate the muscle pains in my chest and stomach area which were probably caused by all the dry heaves.

Eventually we decided to pump my stomach full of Resource 2.0 so I would have something to puke up and hoping that maybe, just maybe, food would calm my stomach down. What it did was make the vomiting events fewer and further between. That was good.

This was around 6:00 in the morning. Linda eventually went to sleep. I kept it up for the rest of the morning with longer and longer periods between and by mid morning I was sleeping fairly soundly.

When we got up around 11:00 am, the first step was to call the doctor who, of course, said,” No, no, no you can’t quit morphine cold turkey like that.”

He was not sure how fast to come off it but gave us a general guideline that we are following. So I am now back on the morphine in gradually reduced amounts. I felt weak and tired all day yesterday and, of course, the nausea did not go away immediately so there was still some throwing up to do.

One funny event happened in the afternoon as I was walking to our bedroom and picked up my cell phone that had just rung. As I started to answer I realized that I was about to throw up. (Seriously throwing up was happening that fast with that little warning).

It was Pat, a sales rep from PlayWorks on the line. So I said hi and told him to wait while I puked, which he did.  I filled my bucket beside my bed and then we chatted.  Gross! Pat used to be a paramedic so he could handle it.

By the time the day was over and the Oilers had beaten Alexander Ovechkin and the Washington Capitals I was feeling much improved. Probably because I was now on morphine again. I decided to take a sleeping pill before bed and I think that helped. I slept well. No events.

When I woke up this morning and realized I was feeling no nausea, no facial pains, no pain in my throat (well, not much), no real discomfort anywhere. What I actually felt was something like joy.

I called it “joy”. Not a word I use a lot. But the room was bright, my bed was warm, Linda was beside me sleeping, and I was not in any pain. I felt joyful. So I just lay in bed and felt that way for while. Get it while you can. This too will pass.

We now have a program of pills that includes, morphine in decreasing amounts, an anti nausea pill, and a pill to get rid of the thrush. The thrush, which is the reason I had to go on morphine in the first place, seems to be almost gone. There are a few visual signs of the foam on my tongue but, most importantly, the pain in my throat has receded. My swallow does not seem normal yet but it also does not hurt like it used to.

After the last couple of days, I feel so relieved to just be sitting here in my big chair typing and not feeling nauseous or sick. But no rest for the wicked, I have to do more than luxuriate my way to health. I have to get back to where I am eating again.

Remember a month ago I was eating almost all of my own meals. That has to start again. Right now all my food comes through the feeding tube, but now that the thrush is gone I should be able to start eating again.

Oh, I forgot to tell you that, of course, over the last few days I have lost even more weight. I have been at 146 to 148 lbs for a month or so, down from my normal 165 lbs Today I hit the scale at 136 lbs. Yes 136. So I have lost 30 pounds. When any of you tell me I am looking pretty good I know you are just being polite.

The last time I weighed 136 lbs I was 19 years old and playing hockey for the University of Winnipeg Wesmen. I remember the coach announcing at our first weigh in that I was 30 pounds lighter that the next lightest guy on the team. Even Gretzky weighed 165.  I centred the second line but didn’t actually play much. I was injured most of the time playing against the big boys.

Speaking of playing with the big boys, I wasn’t fat at 165 lbs, so most of the 30 pounds I have lost must be muscle. If I am ever going to ride with the Fn Riders again I have a lot of work to do get that strong again. Being able to ride hard on a mountain bike for two or three hours seems like long ways away. A worthy goal.

First step is to go for more walks with Linda. And yoga. And then light weight training. I do have a fat bike, so I can do some riding in the snow this winter. Snowboarding season starts in mid November. I hope I am ready for that.

Look at me. I sound like a man who is ready to live again. A big improvement over the last few days.

Slow to no progress

Not much has changed since the last blog. That may be why I am not blogging much. That and the fact that I am not sure what to blog about any more.

Part of me does not want to write this litany of issues I am dealing with because they are probably boring and it is presumptuous of me to think that anyone would be interested. Another part of me says that I should continue to try document how I am experiencing this cancer adventure and just try capture what it is, boring or not.

Today I decided to continue to try document or express what my cancer experience has been recently. And yes, it is a litany of aches, pains, irritants and frustrations that make up my day. I hope it does not come across as me giving up. I am not. I am just frustrated with the lack of progress.

I saw the doctor again last Tuesday. Linda and I watched as he put the scope down my nostril. We could see a patch of white foam on the left hand side of my throat. It seems to be the inflammation from the thrush but other than that everything looked very healthy.

The cancer is gone. The doctor also assured us that that those spots on my lungs are not likely cancerous. He is not worried. We will know in 5 weeks.

The yeast infection, thrush, is not getting any better. I still feel pain at the left side at the back of my tongue and my tongue is covered with foamy white spots which are the signs of thrush. The prescription I was taking (nystatin) did not work to clear up the thrush. So I am now on a one that is stronger (fluconazole). I am hopeful that it will work.

The thrush inflammation on my tongue makes it painful to eat. Remember, I was eating three meals a day by mouth and now, because of the thrush, I am back to eating only through my feeding tube. I now weigh between 144 and 146 lbs. Not good.

I also have a bad taste in my mouth most of the time, which I think is from the thrush. A minor irritant but still it’s there and it’s not pleasant. Also, I am still dealing with build ups of phlegm from my nose and throat. I frequently spit into a sink or a Kleenex to get rid of the phlegm and the taste. No, the phlegm is not as bad as it was before but it has not gone away.

The greater concern is that the doctor also thinks that the thrush is triggering the pains I am experiencing in my facial muscles and bones. These are generally dull but persistent pains that feel sort of like a toothache or ear ache.

I am now controlling this pain by taking morphine pills every couple of hours. I find that massage and deep breathing also help  when the morphine has worn off but frankly without the morphine I would be in constant pain. How would people ever do this without drugs?

When the morphine is working I don’t feel any real pain but it is rarely working 100%. It is often either taking hold or wearing off. My challenge is to always be taking the pills just frequently enough to be effective. For the most part, it’s working.

The downside is that my brain is on morphine all day long. Morphine dulls the pain but it also muddles my thinking.  I go through the day in a bit of a fog. I lose track of time. I can’t remember what I have done from one moment to the next.

I get flustered easily. Normal life seems harder to manage. Not too hard, I can manage, its just harder. Since I had to start using morphine, my life does not flow as easily. Morphine fog.

I also feel tired a lot of the time. I experience it as a heaviness across the back of my neck and shoulders. Deep breaths and relaxation exercises help but sometimes I feel like I could spend the day doing them.

In general, I don’t feel good about myself. I often feel out of sorts and I don’t seem to have the energy or discipline to take advantage of all the free time I have. Not only am not doing anything productive, I am also not doing the relaxing and healthy things.

I used to read the paper, read books, listen to music. Yes, I still do these things but not as much. I have not read a new book in the last two months. I don’t even go for walks. I have only gone on one walk since we got back from Winnipeg. I just find it hard to do things. For instance, writing this blog which use to be easy is now hard, so I am not doing the blog as often as I used to.

What do I do with my time? Well, too much Facebook, too much web surfing, too much Donald Trump and now there are hockey games. Can you believe the Oilers are number one in the league after six games?

I have also been sleeping a lot. I don’t know if it’s the morphine or the cannabis oil I have been taking at bedtime recently but I find that I am sometimes sleeping in until late in the morning. And I take naps.  Another reason I don’t feel I am using my time well. Yes, I know, sleeping is therapeutic and I am happy to sleep when I need it but all this sleep is not making me feel any better.

As you have probably guessed, I am not being good company for Linda these days. I often find it a bit hard to talk because of the throat pain but even more I just find I am not sharp enough to stay on top of what is going on so I tend to not participate in normal daily conversation like I used to.

I frequently feel out of step, so sometimes I don’t try. Linda is using hearing aids these days and sometimes she doesn’t put them in or she is listening to the radio through them. Since my voice is also deeper and quieter, she doesn’t always hear me properly.

So, I have to repeat myself. Since it’s a bit of a strain to talk, I find it frustrating to have to say it again. I often regret having started a light conversation because it starts out as a simple observation or question ends up being way too complicated.

Subsequently, our conversations are shorter and not as deep. The communication barriers also throw my comic timing off and, as a result, our conversations are not as much fun.

It’s a strain on our relationship for sure. Thankfully Linda is very understanding and we are adapting, but frankly; I want my brain back.

The new thrush medication and the morphine both have the potential to upset my stomach so I sometimes feel waves of nausea through it. I mention this now because as I was writing this blog I started to feel nausea coming on and had to run to the toilet to throw up. I emptied my stomach of the last tetra pack of Resource 2.0 into the sink. Yuk. I hate throwing up.

Interesting that before I threw up, I had been writing all these negative thoughts. They must be a reflection of how I was feeling physically.

That was in the early afternoon. Since then, I have had a long recovery nap so I am starting to feel rejuvenated. As I finish writing this after an evening of watching TV, I do feel better. Its hard to pin down how I am feeling because nothing seems to stay the same.

Before I sign off, I should mention that some of you have recommended various medications and concoctions for getting rid of yeast infections. My sister Shenta and my friend, John Tansowny, both recommended honey concoctions. John even gave me the rest of the mouthwash he was prescribed for thrush.

I haven’t tried anyone’s special remedies yet but did get some acidophilus pills that someone recommended. It is a probiotic, similar to what is found in yogurt. Many of you are recommending yogurt for thrush. I got the pills because I do not like yogurt.

I am hoping that, by the time I send out the next blog, this thrush will be gone, my facial pains will be gone and I won’t need the morphine any more. I wonder what my issues will be then?