It’s Finally Happening

For 12 days, I’ve been telling Marc that “today is the day. Today is the day they’ll call me.” Well, wouldn’t you know it on the 12th day I got lucky and got the call I’ve been waiting for.

I have a confirmed surgery date of April 30.

Wow, talk about the best early birthday present ever. Not many people want to have their rectum removed and their bum stapled shut for their birthday – but I’m not like most people.

So, now I’ve got 16 days to get ready physically and mentally. I’ve been so super tired lately so this cold weather is a blessing in disguise. It’s taken me two weeks of riding in the cold to realize that with my body as worn down as it is, it’s okay to say “I’m too tired to ride.” This is not an easy thing to do. I’m programmed to ride, ride, and ride some more.

I’ve got a good chunk of work to do before the 30th. But this is all really self-imposed. My super bosses at Know Agency have been overwhelmingly understanding and I really can’t imagine any other place being so accommodating. So yeah, if you need SEO or digital marketing work/advice/expertise – give Know Agency some payback for me and contact them.

It was my birthday on Friday the 13th. It was a good one. A huge thank you to everyone who made it so special.

And now, comes some tricky stuff. There are lots of people who I want to get together with before my surgery. However, I cannot under any circumstances risk catching a cold or flu. So if you have the sniffles, sore throat, an earache, a stomach ache, an upset stomach, pink eye, shingles, are getting over a cold/flu, or don’t feel well and believe you’re not contagious – please stay away from me and Marc. I cannot get sick. Please cancel our plans. If we meet up and I sense a sickness – I will leave. Yes, this is harsh but I have no other choice. This surgery is this important.

One more thing… having this kind of surgery is not fun. My rectum is being removed and my butt is being stapled shut. Not cool. At all. After the surgery, I won’t feel great or look great. I’m only in the hospital for a short period of time (four days). So please, do not come and visit me. Seriously. You can come visit me at home – you can even put me in your car and take me to Starbucks or somewhere with fresh air. But please, do not come visit me. Put it this way, not even my parents are coming – I’ve told them to stay home and to come in May or June when I can move around without a catheter, a hospital gown, an IV, an abdominal drain, adult diaper thingys, and narcotics.

I know, I’m being harsh and very self-centred here – but I don’t want to get sick and have my surgery cancelled and I really don’t want you to be disappointed with a hospital visit that involves me not being my best self.

So, yeah. That’s the news. I think being 46 is going to be really damn good. Well, apart from not have a butt anymore. But hey, at least you can’t call me an asshole…. (Sorry this is a barbie butt joke…)

It’s The Waiting That’s Hard

Two weeks ago I received a call from the Civic Hospital with the date and time for my pre-op appointment. This was a very welcomed phone call. However, I still don’t have a surgery date. All I know is that it will happen “sometime in April”.

So now I wait. I’m trying not to count ahead in the calendar and guess when the surgery could be. This is completely out of my control. But, it’s hard for a planner like me to not be able to plan. I like schedules, to do lists, and a bit of organization in my life. I like to save the serendipity and fast-and-loose living for vacations and lazy days.

So, I guess if anything this waiting period is forcing me to be a little bit more fast-and-loose with my long-term planning. I don’t know when I’ll be in hospital or when I’ll be getting on with my recovery. All I know is that it will happens sometime in the next five weeks. So I wait.

The thing is, today I got out for my first road ride of 2018 and it was super fantastic. It took a bit to readjust to the geometry of my ‘cross/road bike – bit different from my fat bike. But soon enough I was rolling along with Big Red (this is my nickname for my bike and was also my favorite gum as a kid).

This ride really was a gift. I didn’t expect to get out for a road ride until well into late June or early July. While I enjoyed every moment of the ride, I’m now trying to figure out how I can squeeze in as many road rides as possible before my surgery. See the thing is, I haven’t been feeling all that great lately.

In fact, I think this is the first time since my original diagnosis in 2009 that when asked how I’m feeling I answer with a variation of “not great”, “sick”, “pretty crappy”, or “tired of being tired”. This is what makes the waiting so much harder. The surgery and the recovery are my light at the end of the tunnel – but it’s so hard to keep looking forward when I have no idea where forward is.

29570571_10155161838046244_5114749099553958602_n

In a way, I hope we get a massive snow storm and then a massive rain storm everyday until my surgery and for the first few weeks of my surgery. At least then, the feeling of missing out and not being able to do what I want would have less of a sting.

But, this likely won’t happen. So, instead I stay busy and try not to think about something that is going to happen but I don’t know when. I signed up for a hand building pottery class at Hintonburg Pottery – oh it is so great. The first class was last week, it was 2.5 hours of pure relaxation – I didn’t think about anything – I just focused on the big lump of clay in front of me.

Okay, well this has gotten a bit long. Now you know what’s going on. Don’t worry – I am fine. Lots of waiting. Lots of tiredness – but this doesn’t mean I can’t go out for a bike ride,  supper, meet up for coffee, etc. Life has to keep on going. And really all things considered, with what is happening in this great big world of ours, a bit of waiting and some tiredness are just specs in a big dirt pile of chaos and problems.

Reading, Watching, Listening, and Eating

It’s time for a post that is more interesting than my health chaos.

Reading

I like books. I remember as a kid I’d go to the library, come home with a stack of books, sit down and read all day. Nothing better really. However, sometimes reading in the middle of the day seems like a guilty pleasure, as if I should be doing something else. But this year, I’m abandoning the “shoulds” and fully subscribing to the “wants”. I’m an adult, surely reading in the middle of the afternoon is one of the few earned pleasures of making it this far without screwing up too much. So, here’s what I’ve read and what I’d like to read. Note, I’m a slow reader so please be patient with the disparity in the two lists.

So far this year in 2018, I’ve read:

  • The Crown: The Official Companion, Volume 1 by Robert Lacey. I thoroughly enjoyed this book. It took me a long time to read it but I felt I couldn’t rush through as I needed to absorb all the historical facts that somehow were missed in my many years of education. If you’re a fan of The Crown on Netflix or would just like to learn more about an important era – this is for you.
  • All We Leave Behind by Carol Off. This was a heavy heavy read. It pulled on my brain making me think hard about the destruction governments such as ours somehow justify. There was again so much history and key information in this book that I had to read it slowly. I also found reading about war and the real people involved in this harshness did not make for good bedtime reading. I’m torn on Carol Off’s decision, but this is exactly why she wrote the book, she is also torn on what is right/wrong as her role as journalist and compassionate human being. One paragraph stood out for me (not word-by-word but as I remember it), “When Asad and his family arrived in Hamilton, ON they were shocked. Shocked that in a country as rich as Canada, there would be people living on the streets – homeless with no one looking after them.” Please read this book, I think so many of us are unaware of what is happening on the ground in Afghanistan (and beyond) and why it’s happening.
  • After You and Still Me by Jojo Meyes. After two heavy books in a row, I decided to read some lighter fare. These two books by Jojo Meyes are the follow-on to Me Before You. Good writing. Engaging characters. Moments that generate a pause. Some subtle commentary on human decency. Thinking about what is important. If you’re looking for something that is cloaked in “lightness” but provides more, I recommend the three books. Start with Me Before You and then read them in order.
  • Wreckage by Emily Bleeker. I’m currently reading this. I’m trying to like it. It’s kind of a mystery/thriller (not my chosen genre). I’m at the point where I just want the author to skip all the dribble and get to what happened. But I’ll stick with it.

On my to read list:

  • Educated by Tara Westover
  • Land of Lost Borders: Out of Bounds on the Silk Road by Kate Harris
  • Long Haul: A Trucker’s Tales of Life on the Road by Finn Hales
  • Tears of Salt: A Doctor’s Story by Pietro Bartolo and Lidia Tilotta
  • My Journey from Death to Recovery and the Redemptive Power of Hope by Rana Awdish
  • Dunkirk: The History Behind the Major Motion Picture by Joshua Levine

Watching

I like to think that I don’t watch much in the way of television shows and movies, but then I’d be telling a half-truth. I watch and I like it. Primarily I watch shows on Netflix when I’m riding my bike. However, lately as I’ve been dealing with what feels like insurmountable fatigue, I’ve found myself on more weekend afternoons than I’d like to admit, flaked out watching something on Netflix. Such is life. I could nap instead, but frankly, I don’t nap. Napping only happens when I stretch out on the couch with my favorite quilt, a very warm black cat, and a carefully chosen program on Netflix – then I take an adult version of a nap.

If you find yourself in need of an adult nap or just want something to watch, here you go:

  • Broadchurch. Hooray for the third season.
  • Everest. What a film.
  • Restless Creature. Wendy Whelan gives us a look at what passion really is.
  • The Bridge. Seriously, how good is this series?
  • Top Chef. Can’t help it. I have to watch it.
  • Grey’s Anatomy. I watch in the name of research for my upcoming hospital stay. Okay, maybe a half-truth.
  • Molly’s Game. Very good movie.
  • Three Billboards. Wow. Wow. Wow.
  • All The Money in the World. Enlightening.
  • This Is It. For the Michael Jackson fans.
  • On Yoga. Interesting look at yoga from an interesting dude.
  • London Has Fallen. Yes, a weak moment. But it did it’s job. I was entertained.
  • Patriot’s Day. Okay it kept on showing up in my list. So I watched it. I liked it.
  • The Darkest Hour. A good film. But I felt I lacked the historical knowledge to really “get it”.
  • Kill the Messenger. Based on a true story. Worth watching to help understand what is and isn’t reported.

Okay, I was going to include lists for the Listening and Eating categories, but this post is too long now. I’m even getting a bit bored. So I’ll save that for another day.

If you have any recommendations for any of the categories: Reading, Watching, Listening, or Eating – let me know.

Never A Dull Moment

Well, at least life is remaining exciting (challenging) with the twists, turns, and curveballs it sends my way.

I spent 14 hours at the ER on Thursday. Arrived at 4:30 a.m. Left at 6:30 p.m.

I avoid the ER as much as possible but sometimes the pain can’t be ignored. Terrible stomach pains convinced me to wake up Marc and to go out in public in my pyjamas on Thursday morning.

At the end of it all, I really did experience all levels of humanity. I heard and saw things I’ve never anticipated. I witnessed people treating doctors and nurses very poorly. I saw the kindness in people who realize that there is someone feeling worse than them. I experienced the very short tolerance people have for waiting. I heard yelling, threats, and foul language – all directed at the nurses and doctors. Shocking really.

I neglected to bring my Kindle with me on Thursday morning, thinking I wouldn’t be there very long. But frankly, I was in no condition to read and I didn’t need the Kindle to pass the time – there were enough fascinating/shocking people to do this for me.

Blood work, CT scans, surgical team consult, GI team consult, and more blood work. At the end of it, no one is sure what is causing my ridiculous stomach pain – likely a combination of a worsening diversion colitis flare and the impacts of the Prednisone taper. The body is so super complicated.

Turns out I have to go back for more tests because the CT scan showed that my liver bile ducts are narrowing and scarred. Apparently this can be due to Primary Sclerosing Cholangitis (PSC). Turns out that people like me with ulcerative colitis are susceptible to this disease. It causes narrowing of the bile ducts which could eventually result in severe liver damage. Sigh. The good news is my liver enzymes are normal so this is a good thing.

The other fun twist to this crazed body of mine is that the arthritis pain is back. At least I had one good month free of the crazy joint pain. I’ve got a prescription for strong pain killers – I use these when the joint pain and/or stomach pain is too much. Fun.

So yeah, lots of excitement here.

 

Control the Controllables

My surgery has been cancelled/postponed.

Turns out that I can’t have massive surgery while on Prednisone. Prednisone inhibits inflammation, which in-turn inhibits healing.

The biggest risk factor with this surgery is not healing properly.

So – no surgery on Feb. 9.

The surgeon I saw on Thursday said that they’ll try to get me in for surgery in the middle of April. By then I’ll have finished the Prednisone taper and have had a couple of weeks to recover from any taper side effects.

Thursday afternoon was very very hard. I cried a lot. But I understand the decision. I appreciate that the surgical team are doing everything they can to make sure I’m as ready as possible for the surgery.

I was listening to the Morning Shakeout podcast on Thursday while walking to and from yoga – this episode featured an interview with Des Linden, a top American marathoner. She said something that struck a chord while I was walking and it is still making a lot of sense:

“Control the controllables.”

She said this in reference to how she approaches her training, racing, recovery, and life in general. I like it. I’m borrowing it.

This is exactly what the surgical team is doing – controlling the controllables. And this is all I can do – get myself as healthy (physically and mentally) as possible to be ready for an April surgery date.

 

Good News

I don’t know what I believe in but I do believe that there is some kind of higher power out there keeping watch. I don’t know how it all works, I just know that it’s important to have some kind of faith and to believe in something. So I do.

I remember when I was in grade 12 and had a car accident – I managed to roll my dad’s car on a gravel road. My friend and I were left dangling upside down in the car, strapped in by our seatbelts (thank goodness we were wearing those) in a farmer’s field literally in the middle-of-nowhere northern Saskatchewan. We both walked away from the accident without a scratch – we were very lucky.

My dad said to me after that accident “someone was watching over you”. I didn’t think much of it at the time, but that comment really has left an impression.

Over the years I’ve thought about that someone who is watching when I’ve been dealing with injuries, illness, sadness, good fortune, and happiness.

On Monday it happened again. My phone rang and I received a life-changing phone call. In fact the phone call was over so quickly that I’ve been trying to replay its entirety over-and-over so I can remember every second of it, and to make sure that I gave the right answer to an all important question:

“Hi, I’m calling from the colorectal group. We’ve had a surgery cancellation for Friday February 9th. Do you want this surgery date?”

Yes, this is the question I was asked. I was stunned. Of course I said yes. So now I have a surgery date. I don’t know the time or even the hospital. I’m waiting for the next phone call and pre-op assessment.

Yesterday was a blur. Calling a few people, talking to my colleagues, planning out my work schedule, and really just trying to stop grinning. Most people might not get excited about surgery, but well, I’m a bit different.

This start of 2018 has been tough. The joint pain and the constant bleeding have been a lot. In the past two weeks I’ve had five medical appointments, seeing various doctors and giving up lots of blood for tests. On Thursday, I’ve got an appointment with one of the surgeons on the colorectal surgical group team – this was scheduled a few weeks ago to discuss my surgery options.

Some more good news is that I’ve learned more about the intense joint pain I’ve been dealing with since November. Turns out it’s called enteropathic arthritis due to ulcerative colitis. I saw a rheumatologist on Friday (again someone was keeping an eye – this appointment was originally scheduled for April 3 – but again a cancellation and I was called). The good news about this arthritis is that it should go away once I have the surgery. Relief. This joint pain has been the worst pain I’ve ever experienced – at times it has been so severe that I really thought I was crazy.

So yeah, good news. February 9th. A big day. I’m looking forward to lies ahead. Thanks to that someone who is keeping an eye – I’ll try to do the same.

Good-Bye 2017

It’s just a bit after 12:00 p.m on December 31, 2017. I sit here patiently waiting for time to pass. Calvin is stretched out on the table (yes, a cat on the table). We’re waiting for a very special arrival today.

Not only is it the end of a not-partitcularly-fantastic year, it’s also the best day of the year – Marc comes home today from Belgium. As happy as I am for him to spend six weeks or more in Belgium racing and training – I do relish his return.

2017 was not fantastic. It wasn’t utterly horrible. But it really wasn’t great. Yes, there were many special days and moments, but these were overshadowed by persistent challenges.

The undercurrents to our year were my ongoing battles with health and Marc’s recovery from a concussion suffered on January 3, 2017. These two constants were with us everywhere we went. We’re very fortunate, Marc is 99% recovered from his concussion (we are lucky) – but the post-concussion symptoms will always be there.

More days than not, I was awash in a feeling of  “life sucks and then you die”. My commitment is to push this pessimism (some may call realism) to the far corners of my brain. We are lucky. So very lucky. No one is bombing us. The fridge is full. We are safe. We are loved.

I’m happy to welcome 2018 and put the losses, sadness, doubt, and fear behind us. Marc will be home in a couple of hours. Can’t hardly wait.