Okay, 2019, So Far You’re Good

So we’re a month and a bit into 2019 and I have to say that things are turning a corner.

The shingles appears to finally behind me. My left eye did not come out of the ordeal completely unscathed but the damage is not too critical.

The uveitis also appears to be in the rearview mirror. I finished the Prednisone on Sunday and so far so lucky – no rebound flare.

So yeah, the health problems that dragged me down and put in me in a not great place at the end of 2018 and start of 2019 are now just a memory.

The thing with memories though is that they often leave a scar. I’d be lying if I didn’t tell you that I’ve got a few extra scars. The emotional scars that come with a roller coaster of being chronically ill are ones that I don’t think ever go away.

For me, the biggest scar is the fear of the unknown. What will happen next? Does the pain in my chest mean something serious or is it just indigestion? Is the pain in my stomach that wakes me up a blockage or something worse? What about these constant cramps in my calf muscles – is this just fatigue or a sign of something more? What is going to happen as I begin to increase my riding and get back to yoga? Will my body rebel and put me back in bed?

Trust is huge. And this is what I don’t have. I don’t trust my body. This body that I’ve tried to treat with the best care I can give it. A decent diet, no smoking, no drinking, regular sleep, steady exercise habits, and a generous amount of chocolate. It seems like I’m doing it all right – but for some reason my body feels otherwise.

So what do I do to overcome this fear of the unknown so I can rebuild my trust? Good question. I don’t know. All I can do, I suppose is just keep on keeping on. I’m getting pretty good at picking myself up. So this is what I’ll do the next time. And yes, I do believe there will be a next time.

What I can do is remember that today is a good day. That yesterday was a good day. And that there is a high likelihood tomorrow will be a good day. This way I can keep up the hope and slowly rebuild myself.

Admittedly, I feel this is all a bit self-centred. I am, after all not dealing with a diagnosis that sees me counting my days and months.

Last week Paul Dewar died. I did not know Mr. Dewar. However, the words posted on his Facebook page after his death from Grade 4 glioblastoma, have imprinted on me:

“…

It is easy sometimes to feel overwhelmed by the gravity of the challenges we face. Issues like climate change, forced migration and the threat posed by nuclear weapons. It’s hard to know how to make a difference.

The secret is not to focus on how to solve the problem, but concentrate on what you can contribute – to your country, your community and neighbours.

…”

I urge you to read Mr. Dewar’s full post and think about how you are making a difference.

I think it’s important to remember that the difference Mr. Dewar speaks of doesn’t need to be earth-changing. The small acts that you do each day when you interact with your family, friends, colleagues, and strangers are the ones that really make a difference.

Talking to a stranger as you stand waiting for the bus. Asking someone who looks sad if they’re okay. Picking up the phone and calling your friends just to chat. Remembering that everyone is dealing with something. Know that the little things do add up.

Not to leave this post on a sad note, I want you to think of these words left to us by two young women who recently died:

“…

I decided not to spend whatever time I had left (whether it’s a year, a month, another ten years—you don’t know until you’re gone) lamenting all the things that weren’t right. Instead, I’d make the most of it. I’m using cancer as the excuse I needed to actually go and get things done, and the more people I share those thoughts with, the more I hold myself to them. If I write this intention down, if I have it printed somewhere like I do here, I have to hold myself responsible, because I have people counting on me.

What is my intention? To live my life. To fulfill all those genuine dreams I have.

…” Fatima Ali,  who died in January at the age of 29 from cancer

“…

Live while you’re living, friends.

We control the effort we put into living.

…” From The Unwinding of the Miracle, A Memoir of Life, Death, and Everything That Comes After by Julie Yip-Williams

So now what? What do I do next? What do you do next?

For me – I talk to the strangers, I pick up the phone, I eat the cake and don’t worry about the calories, I plan for the future, I offer help, I listen, I keep on setting goals and doing all the things I long to do.

I owe this to myself. I owe this to you. I owe this to the people who can’t do what I can.

See Ya 2018

The thing is, the last two weeks and a bit have been a bit rough. Yes, you guessed it – I’m sick again. What started with a slightly irritated eye turned into anterior uveitis which them morphed into shingles on my forehead, scalp, and left eye.

This is the opposite of fun. And to be honest, this recent bout of sickness nearly broke me. I was finally pushed to my point of no return. Never before have I said to Marc, “I feel like I’m dying“.

It wasn’t the pain that made me say this. It was the feeling of giving up. Giving up the fight against this body of mine that seems to hate me.

I really was optimistic with the start of 2018 that once I had my final surgery, the health problems would be over. This simply is not the case. I haven’t felt well since August. Something is off, but according to my blood work, everything is normal.

When doctors keep telling me that there is no indication that there is a problem, it begins be a bit hard to hear. I guess I’m imagining my fatigue, the breathlessness, the small intestine pain, the blockages, the racing heart rate, and the general feeling of being unwell.

And now, still after the acute peritonitis and this crazy storm of uveitis (likely thanks to a funky little gene called HLAB-27) and shingles – I’m still considered to be healthy.

So yeah, now I feel like my body is winning this battle. I try to do everything right – eat healthy, exercise regularly, keep my stress low, get adequate sleep, etc., etc.

But it’s not working. I can’t stop the battle that my body is waging.

Normally this is when I write about looking forward or being optimistic or doing the best with what I have. I can’t write this anymore. I don’t feel this. I’m at the point where hope just seems to end in disappointment and sadness.

So now, I’ve accepted that it is what it is. After nine years on this sickness train, I’m okay with it. This is how it is going to be for me. Better than me than you – I know how to handle it.

I realize this post could be considered to be a bit of a downer – don’t worry. I’m okay. I’m in a new place. I have finally admitted to myself that there is nothing I can do to stop the chaos that is happening in my body. It really is out of my control.

Fortunately, thanks to 2018 Boston Marathon winner, Des Linden, I have a good quote to think of in times like these, “All I can do is control the controllables“.

 

Only Option is Forward

Two weeks ago I was in the hospital. I thought I was just going in for a quick trip to the ER to get my intense stomach and pelvis pain sorted out. I did not expect to stay until Thursday afternoon.

So many doctors. So many questions. So much pressing and poking of my abdomen. So many blood draws and two CT scans. This was all on Tuesday. At this point, Marc was still supposed to be getting on a plane the next day to fly to Belgium.

This all changed when the doctor started asking me about my living will and my end-of-life directives. This is when shit got real. Turns out that I had acute peritonitis. You can Google this if you want. Let me just tell you it’s bad. 40% of people who get this die from it.

Those days in the hospital were crazy and intense.

And now, here I sit, two weeks later. The pain in my abdomen, pelvis, and the area where my rectum used to be finally eased off on Saturday. (Yes, three days ago.)

I don’t know what caused the acute peritonitis. I saw doctors from the gastro team, the medicine team, the general surgery team, and the gynaecological team – no one could tell me why I got sick. It’s a mystery.

What is not a mystery is that life is for the living.

So now, it’s forwards and upwards. I don’t know why I got sick. I do know that never want to experience pain like that ever again (the pain caused me to faint and crash land on the floor).

But this is the past. I live in the here and now. So now I get back to life. I was sick, and now I’m not. End of story.

On Repeat

I feel like I’ve written a version of this blog post so many times before. It’s the post that goes something like this: okay there’s a big pile of lemons but it’s time to make lemonade and I can’t sit around waiting for something to change, if I want progress and to be whole again, I have to be the change, I have to be the one inspiring me.

Yep, I’ve written very similar words many times before. All those times before I was in the thick of racing my cyclocross bike and had big goals I was aiming for. Back then I was bound and determined that I wouldn’t let little barriers like chronic illness stop me. In fact, at the time, this was just the extra fuel I needed to convince myself that anything is possible.

Now, it’s a bit different. I’m not that same bike rider anymore. I’m not that same person anymore. Now, the bike for me is something that I ride for fun. I want to ride and long and hard. I want to ride my ‘cross/road bike, my mountain bike, and my fat bike. I want it to be fun.

This is the time to put a new record on the record player. No more repeating the same old words about lemons. Now, here at the age of 46 with a huge dose of perspective and life experience, the training, the riding, and the racing mean something different for me.

I want to ride. I want to get stronger. I want to lift weights. I want whole body fitness. I want to be outside. I want to enjoy what I’m doing. I want to do it because it feels good that day. I want to be comfortable in my skin and spandex on the bike.

Yeah, I think this is a pretty good place to be. Tomorrow is a brand new start. I start with heaving some dumbbells around in the basement. I get going with some structured bike riding. I commit to my yoga practice. I do some new stuff like walking in the woods and slowing myself down. I get myself ready for a great winter of long fat bike rides. In between all of this I remember that there is a huge life away from sport that includes things like pottery class, drawing, movies, books, delicious food, traveling, and exploring this city fully.

It’s kind of exciting. I’ve got to admit it. I think this time around, it just took me some extra time to find myself again. And now, I’m keen to see what’s next – gravel riding, more technical mountain biking, riding up big mountains and eating croissants, bunnyhopping curbs, and maybe a few drawings about bikes – really whatever I want.

 

Lingering

I’ve had this gnawing pull to write a blog post for a few days now. The only problem is, there’s simply not much to say.

I’ve been riding a bit – not as much as I’d like. I’ve signed up for another pottery class. I’m doing the local cyclocross series around Ottawa on Sunday mornings. I’m slowly teaching myself to draw thanks to a very well-written and illustrated book. I had a silly fall on my mountain bike last weekend and sprained my thumb. That’s really about it.

I kind of feel like I’m just lingering. Waiting for things to happen or even turn around. The lack of control that comes with the long-term status quo of lingering can be tiresome and unnerving. The not knowing and the weariness of wondering if it will ever end can be a lot to manage.

When it gets to this point – the point where I am now, I get fed up. I feel the need for action and for something to happen. Normally, I would tell myself “right then get up and do it then”. But I can’t do this. I’ve got something new keeping me at a standstill – fear.

Fear of not knowing what could happen. I’m used to riding and training. I’m used to feeling alive through my ability to sweat and suffer. But this is coming with a heavy price right now. So what is a person supposed to do? I’m about ready to say “to heck with it – let’s get back on the two-wheeled horse and start moving forward”.

If not for my physical health, but for my mental health. This waiting for results and waiting for phone calls about doctor’s appointments in the distant future is no way to get through the day. Yes, there are days when I’m so tired that I can’t walk up the stairs without being winded and needing a little sit down. But then there are the days when I feel like I could ride for hours and hours.

It’s time for compromise. Time to live fully on the days when I can and time to take the extra nap on the days when I need it.

And no, I can’t find other ways to live fully. A full life for me means I ride my bike. This might not make sense to you. Well, think about that thing that you do that gives you a full life. Now, take it away. How do you feel? Exactly. Now you understand why this lingering cannot continue.

 

 

 

Learning To See

It’s been six months since my panproctocolectomy completion surgery. Geez, that is a mouthful isn’t it?

When I saw my surgeon in May at about the half-way point of the first critical phase of healing, he told me it would take “a good six months until you are fully healed and feel normal”.

Well, I’m ready for it. I’m ready for feeling normal. Any day now, I guess.

I was feeling really great physically – riding a lot, starting to find some strength and endurance, and generally starting to feel like myself.

And then I wasn’t. It kind of snuck up on me, but seemingly overnight I couldn’t walk up the stairs without getting winded, I couldn’t do back-to-back bike rides, or go for a long steady mountain bike ride.

I was tired. All of the time. I still am.

So now I’m riding when I feel like it and when the conditions are pleasant. This is hard. I feel guilty for not being out on my bike right now on this unseasonably warm October day. But, I can’t – I’m tired.

Or am I? Yes, I’m starting to wonder if this is all in my head… Marc assures me that it’s not in my head. But sometimes it’s hard to know. I keep thinking that tomorrow I’ll wake up and feel like myself again.

It has after all been six months.

I did see my gastro doctor today. I’ve done more blood work and he’s put in a referral to a liver specialist for that pesky liver disease that is lurking in my chaotic body. Until I hear back, I wait – status quo.

Keep riding when I can. Keep lining up at ‘cross races. Keep trying my hardest. Keep my eyes open and looking forward.

Seeing the possibility rather than getting frustrated with what isn’t possible. It’s not easy. I’m not that great at it. But, there is no other option.

 

The Tides of Perspective

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This evening while walking home from a Vinyasa yoga class, I flashed back to a few months ago when I could barely walk 500 meters. I thought about how much had changed in just four months – how much stronger and fitter I’d become.

And then I thought back to a year ago, just a few days after the opening weekend of the 2017 – 2018 cyclocross season. We had been in Rochester, N.Y. for the weekend where I had placed fourth on day one (with a call-up of 21 out of 22 riders) and the next day placed mid-pack due to some tight and anxious riding. All in all, a successful comeback weekend after the 2016 – 2017 season when I was recovering from surgery.

I remembered how stressed I had been leading into that first 2017 race weekend. A bundle of anxiety, hope, and fear. I managed to work myself up into my traditional pre-race ball of stress, but got through it with real hope for the rest of the season. I chased this weekend with a good race in Rigaud, PQ and some very good races in the local Ottawa series. I had high hopes of getting close to or on the podium at cyclocross nationals and then racing well in Mol, Belgium.

Well, these last two didn’t happen. I wasn’t technically prepared for the course in Sherbrooke, PQ and my body slowly but surely fought back with a hard and painful reminder that even without a colon, ulcerative colitis would aways be with me.

But the past is the past.  So why write about this now? Well, I think it’s the perfect time to write and think about perspective since I just finished racing in the opening weekend of the 2018 – 2019 cyclocross season in Rochester, N.Y. This past weekend there were over 40 women racing in the 1/2/3/4/5 category  – this is awesome.

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The run-up from the river. Thank goodness for sturdy course tape.

Thanks to my decent season last year, I had a second row call-up on both Saturday and Sunday. However, I knew going in that the virtues of this second row call-up would be very short lived.

Sure, it’s been four months since my recent surgery – but it takes a long time to rebuild and heal. This second go-round has been much harder. My body is pushing back hard and is not giving my any breaks. It seems like I take two steps back for every one step forward.

All this to say, I did not have any high hopes for the 2018 Rochester cyclocross race weekend. On Saturday I was last. On Sunday I was second last. I didn’t have any mechanicals, crashes, or other incidents on course that I can point to that contributed to these results.

I’m simply not where I was last year, two years ago, or even three years ago.

Is this hard to take? Heck yes, it’s really hard to take. The negative pre-race talk from fellow racers and the brutal heckling on the stairs (one guy told me to go faster next lap), doesn’t help but whatever, people sometimes aren’t their best selves on race day.

It’s hard to race at the very back of the race. It’s hard on the ego. It’s hard because I know what I was capable of. It’s hard because I don’t know if  I’ll ever get back to where I was. It’s hard because I just don’t know what my body can do anymore.

But, through it all, I’m so happy I raced. When I crossed that finish line on Saturday I was crying. I was crying tears of relief, joy, and success. I did it. I raced – I didn’t think I’d ever race again. And I did it.

On Sunday, I wasn’t convinced I could line up again on the second row and have a repeat of Saturday. But Marc reminded me that Sunday could be my last race of the season and that I needed to remember how emotional I was on Saturday after racing.

So, I did it again. I lined up on Sunday and I raced. I had a strategy this time. Go as hard as I could on the open power sections and ride the technical sections calmly and in control. I focused on looking forward, clean barriers, using the entire width of the course, and on keeping constant pedal pressure. So this is what I did. I stayed positive the entire race and was very happy to not be lapped by the race leader.

I did what I could with what I had on the weekend. This is all any of us can do on any day of the week when faced with whatever challenge we have in front of us. To quote a smart person I know, “All you can do is all you can do”.

Believe me, I really wish I didn’t have so many lessons in perspective and making the best of my situation. But I do. So it’s up to me to take these doses of perspective and use them to my advantage.

One day in the future I’ll look back on the September 8/9 weekend of 2018 and realize how far I’ve come.

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I think this was just before entering the wooded technical section. 

A huge thanks to Josée, Marc, Steve, Ian, Matt, Todd, and everyone else who cheered me on. It’s amazing what a lift it is to hear your name being called when out on course doing the racing thing. A big thanks to Josée for the photos and for handing me my bottle on Saturday when I managed to mangle my bottle cage on a wooden stake. 

It was a great weekend. Catching-up with long-time cyclocross friends, being outside all day, cheering on the other racers, and most importantly seeing friends have great successes on their bikes on race day. A big shout-out to Marc for his third place on Sunday and to Steve for his double second places.