Admittedly, I’ve had some tough days and weeks. I want to thank everyone who has reached out to me offering kind words, sturdy shoulders and for just simply being there. It means so very much to both Marc and myself.
I’m steadily getting back to being me. Working hard on being positive and looking forward. Taking the time to look around and recognize how fortunate I am. To not take for granted the health that I do have. To remind myself that I have a body that despite the cranky colon, is fitter and healthier than the average person. I’ve stopped dwelling on the things I can’d and I am enjoying everything I can do now.
On Wednesday ulcerative colitis won. I was crying in the car. I was crying in the hallway at work. I was crying in the car on the way home from my doctor’s visit. I was crying on Marc’s shoulder. On Wednesday it all just became too much. Too much of feeling rotten and not feeling like myself. Too much of not knowing. Too many unanswered questions. Too many bad days and not enough good days.
Today is a little bit better. I still feel rotten physically, emotionally and mentally. I feel like ulcerative colitis has become an unstoppable train and no one knows how to slow it down. I can’t get off this train but I’d like to get back to where I was five months ago.
Now, I just wait. The new drug, Entyvio, has knocked down the ulcerative colitis symptoms but the side effects of this drug are not any better. There is nothing really to be done about these side effects – apparently less than 10% of the people in a two-year trial of Entyvio reported the side effects I’m getting.
My doctor has agreed to arrange a surgery consult for me. It will likely be a year-long wait until I can talk to a surgeon. Until then, I keep taking Entyvio and deal with constant nausea, fatigue, headaches, stomach pains, chest pains and a general feeling of unwellness.
So that’s that. I don’t have much else to say. I really don’t have anything positive or uplifting to say. I’m going to continue going to work, riding my bike, and doing everything else I enjoy. Because after all, life is for the living.
Photo by Alain Villeneuve of RedCap Photography
I love this photo. It encapsulates everything I’ve been looking for this cyclocross season. That feeling of going very deep and asking my body to do more. That feeling after the race where I’m convinced I can’t pedal another stroke and I’m struggling to catch my breath. The memories and sensations that become locked in my body and heart after such a strong race. Feelings of happiness, success, relief, elation, fatigue, and the desperate need to do it all over again.
Admittedly, three weeks ago I was less than pleased with my start to the cyclocross season. After looking at my lap times I felt even worse. I thought about where I used to be and where I really had planned to be this year. It didn’t take long for me to get down on myself.
And then I went to cyclocross practice and helped a small group of women work on their cyclocross techniques. I felt their enthusiasm and excitement after having done the the first race of the season. Every week at these sessions my primary underlying goal with each drill is to build confidence. Confidence on and off the bike. Confidence that these women can race any course and handle any off-camber, descent, barrier, run-up, or other obstacle. The confidence to try something new and be ready for all outcomes.
Over years of racing I’ve learned how vital this confidence is. Trusting and believing in my abilities took me a long way. It helped me push back the voices that said I couldn’t achieve my goals. And this on-bike confidence has helped me so much in all other aspects of my life.
So, if I’m trying to get the women in my cyclocross clinics to gain and learn this confidence – why was I letting my confidence falter? Exactly…. time to hit the reset button and remember that I can race a bike. I can drive a bike around a course and I do know how to race. Sure, I don’t have the fitness I had “planned” on having and I’m not reaching the goals I had initially set out in January – but so what?
The key is to simply Just Do It. Get out and ride. Get out and race. Push my limits. Enjoy the moments and hold them close. At the end of it all, we’re grown ups riding around on bikes – no one is really paying any attention to our results and lap times.
Line up every Sunday and give it a go. Race hard. Accelerate out of the corners. Look forward. Keep pedaling. Dig deep. Trust in yourself. Have fun.
Last night I watched the finale of Great British Bake Off and I must admit I found my eyes getting a tad watery when the winner, Nadiya Hussain said:
“I am never going to put boundaries on myself ever again. I’m never going to say I can’t do it. I’m never going to say maybe.I can, and I will.”
Something to remember the next time you’re not sure, you hesitate or you hold back.
You know when you have a sore knee and there are days when it hurts less and days it hurts more. Regardless of the hurt, you try your best to do the things you enjoy and not let the hurt worry you too much. You wait for it to get better, hoping and believing that it will. Delaying that call to your physiotherapist and try some new stretches or some extra ice in the evening.
While I don’t have a sore knee – I do have a very angry colon and it’s kind of like that sore knee. Right now my colon is determining what I can and can’t do. While I try my best to maintain control, it’s a real challenge to assert this. Instead my colon is holding me captive and has got me in a holding pattern.
A holding pattern of generally not feeling very good at all. I have days when I feel better than the day before but honestly these better days really aren’t that great. After being sick for so long, my perspective on what “feeling good” and “feeling bad” really means are quite different from most people.
I’ve been in this flare since June 20. This is the longest flare I’ve been in since my diagnosis in 2009. Admittedly, this flare is starting to wear me down. I have days when I just can’t understand why this is happening to me. I shout out loud when I’m riding my bike and when I’m alone in the car. I shout at the sky, tears streaming down my face, demanding answers. But there are no answers. There are just the facts. The fact is I’m sick. I have to wait and maybe the new medication will work. We’ll know in eight weeks if the new medication is going to work.
Yes, eight more weeks of waiting. Eight more weeks of wondering. Eight more weeks of shouting at the sky. Eight more weeks of my answering the question “how are you feeling?” with “ah, pretty good”. Very few of you get an honest answer from me… You do the same thing. You could have an extremely sore knee but when I ask you how you’re feeling, you’ll shrug your shoulders, smirk and say “oh pretty good”.
I wish I could wake up tomorrow and be better. And in fact I did have a two week run where I tricked myself into believing that I was “cured”. Yep, a desperate person will believe anything… My symptoms went away. I felt like I did in early June. But this two-week reprieve is long gone. I’m back to where I was before (but a bit worse). I don’t know why my colon cut me some slack for two weeks – likely part of some big cruel joke on its part to get my hopes up. I’m starting to wonder if I’m actually the one in charge here.
So for now, life rolls along like normal. I work. I ride my bike. I race my cyclocross bike. I eat food that I enjoy. I wait.
With September’s arrival comes cyclocross season.
There is something so special about cyclocross. (I know I write this every year….) It’s hard to pinpoint but I think tonight’s experience explains it well.
Imagine a small park with a bunch of flags organized in a 4 x 4 grid pattern on a hill and one lonely barrier in the flat at the bottom. Add into this picture nine women ranging in age from their mid-20’s to late-60’s. These women are riding all types of bikes from disc-brake enabled bikes to bikes with flat pedals. There is a set start time for the session but people arrive when they can make it based on their schedule. Everyone is relaxed and smiling.
The ladies ride around, practicing slow dismounts and mounts. Sometimes they stop and simply practice lifting their right leg over the saddle. Then they practice lifting their bikes and putting them down. They do seemingly simple and basic tasks over and over again. No one complains. They listen. Sometimes it looks like they’re just riding in a circle, but really they’re practicing always looking ahead. Looking ahead to the next barrier, the next corner, the next patch of gravel, the next obstacle.
Eventually the ladies move on to the flag grid on the hill. Working on their uphill cornering, momentum and forward focus, these women keep riding and pedaling. They are getting better. Soon it’s time to move on to a new drill. Riding the grid down the hill, no front brakes allowed and always pedaling. We discuss and dissect the best way to do this. Everyone moves forward.
At the end of the session, we talk about what to work on next week. We discuss some things to think about during the pre-ride. We talk about the different races in our local schedule. We talk about the great success that some of our junior riders are having – two of them off to the World Road Racing Championships and one a member of the Senior National Whitewater Paddling team.
Everyone is so happy to be out again riding bikes together. On Sundays, these women are all competitors and racers but once the race is over so is the competition. On Mondays we’re back together, working with one another to improve and keep moving forward.
This is what cyclocross is for me. These sessions have me feeling like myself again – the enthusiasm from this small group of women is contagious and motivates me to look forward. Who would of thought a barrier, some flags, a bike and a small park could do this?
Earlier in the week I said to Marc, “why don’t I just get it cut out?”.
On Thursday I asked my gastro doctor’s resident the same thing “why can’t you just cut it out?”.
It being my colon.
I learned on Thursday from my gastro doctor that if I really do want “it cut out”, I can have this done. He then went on to tell me that I have one other drug option left – a drug that was only recently approved by Health Canada.
So there are two treatment options left: have my colon removed or try the new drug.
It’s was a tough decision to make sitting in a small consulting room with a resident, second-year medical student and my gastro doctor siting there. My eyes were bleary and I felt like my heart was pounding so loudly that everyone could hear it.
I asked a lot of questions. I asked my gastro doctor what he would do.
And here’s what I’m going to do: I’m going to try the new drug. We’ll know within three months if it’s going to work. If it works, there are no guarantees on how long it will work. If it doesn’t work, I’ll have the surgery.
The last few days have been a bit scattered and confusing. It’s one thing for me to say angrily to Marc and others “just cut it out” but quite another to hear this from my doctor.
So this is where I am.