It seems that I need to update to our about page to include some more recent history. A few weeks ago, someone posted a comment on the about page asking why I hadn't done any randonneuring events since 2014. Apparently this fellow must have blindly stumbled upon that page without reading any of the blog, because I feel like I keep repeating myself and it should be quite obvious why the word brevet hasn't been a regular part of my vocabulary lately. However, I promise to stop repeating myself right after this post!
Today I bring you the story of Pixie-Past, Pixie-Present and a preview of Pixie-Future!
My last long single-bike ride was the 2013 flèche (three short/long years ago). On that occasion, I rode over 425km in a 24 hour period on a fixed gear bike. While no 24 hour ride is a cake-walk, this type of event wasn't that big of a deal for Pixie-Past. I've done many flèche rides over the years, as well as lots of even longer rides, including 5 1200km brevets. For Pixie-Past, a flèche was just another typical weekend of fun on the bike.
Then, two weeks later, the proverbial excrement hit the fan. I won't repeat the blow by blow. If you are new here, page back through the blog for all the gory details. tl;dr or Reader's Digest condensed version: wrong way cyclist hit me head on and I broke my collarbone; inattentive driver hit me from behind and I broke my back; then just as I was recovering from a second back surgery, I was diagnosed with breast cancer.
But even with all this, my spirit was not broken. And that is due in a large part to how supportive John has been throughout it all. He has wiped away my tears and shared the joy of each new recovery milestone. Over the last three years, he has
put his life on hold just as much as I have.
John has graciously hauled me around on the tandem when I lacked confidence to ride my single bike. Pixie-Past took exception to any suggestion that I didn't pull my own weight on the tandem, but there have been plenty of times in the last three years that the tandem has enabled me to stay with a group or to do longer distances and for that I am most grateful. After each setback, I have worked hard to return to a normal routine, including daily cycling. My single bikes have still seen plenty of use, and as a reward to myself for getting through the last three years, I ordered a new travel/dirt road bike which arrived in early May. I managed to put over 1000 miles on it in the first month!
My last cancer treatment was March 3! I'm almost too superstitious to call myself a cancer-survivor. Instead, I tell people I survived cancer treatment! The regimen lasted a year, with chemo first, followed by surgery, followed by every three week infusions of Herceptin to round out the year. It was challenging, to say the least. But I rode my bike to treatments. I walked 4 miles the morning of my surgery - to the surgery! - and I have kept active throughout the entire process.
One of the things that really helped me to do so much throughout the cancer treatments was that as soon as the mammogram came back suspicious, the doctors took me off Alleve and prescribed Tramadol. If you follow bike racing and doping news, you may have heard of this drug, because various members of Team Sky used it. It's not on the banned list, but probably should be. It's a powerful anti-inflammatory and pain killer. In fact, it's magic. I barely experienced pain while taking it. I logged loads of miles on both my single bike mid-week and the tandem on weekends. But at some point last summer, my arms began to itch and soon I was crawling out of my skin. It took a bit of time and lots of trial and error to determine the itching was caused by the Tramadol. Sadly when I went back to simple OTC meds (Alleve and Tylenol), my back pain returned with a vengeance. Chemo and all the other poisons being pumped into my body had ravaged my muscles in ways the previous injuries had not. Despite regular riding, I lost so much muscle mass that it was almost like I was starting over as a new cyclist. Cycling isn't just about leg muscles. Core muscles are a big part of it and my core was just depleted. To top it off, I also had new pain in the pectoral muscles from the mastectomy.
Now throughout the last three years, my calendar has been filled with appointments with doctors and physical therapists. I have a regular routine of stretching and strength training. I've seen a physiatrist, an osteopath and I get regular massage. My TENS unit was my constant companion for the first year, and still sees occasional, but not constant, use.
I have really tried to project a positive attitude throughout it all. I try not to write about the pain. I write about rides. I write about advocacy. I write about medical breakthroughs and the need to fund research. If I don't write about the pain, it doesn't control me.
But the truth is that I have chronic pain. And I have memories of the exploits of Pixie-Past, where there was no pain. I look back at my bike logs and see distances and average pace that are beyond my reach today.
And I want my old life back.
The other reason that I don't talk about pain is that people don't want to hear about it. But indulge me now and imagine all the things you do every day, all the things you take for granted, preparing dinner, standing at a party or stopping to talk to a friend on the street, pulling a few weeds from the flower bed, riding a bike, pumping up tires, oiling your chain, adjusting your derailleur - all these things cause me pain, sometimes intense pain. Stretching helps. Strength training is a 2 steps forward, 2 steps back process. I have to keep things below the level where muscles start to spasm or hurt. I often have to stop to stretch midway through preparing dinner.
I have had my bike-fit redone and have adjusted things to allow for a more
upright position. But I still hit this barrier where pain stops me dead
in my tracks.
Is it ironic that cycling, the thing that brings me the most joy, also brings me the most pain? The thing I have to do to stay sane causes the most pain. The muscles in my lower back start to spasm and twitch as soon as I get on the bike. After a while, it settles down, but then around mile 30-40, depending on how much climbing the route has, the pain gets really intense. I stop and stretch and usually try to schedule a lunch stop at this distance. But it is frustrating. I want to get back to where a 60 mile ride is just a nice day out on the bike.
I've talked with the physical therapists and doctors about returning to my old life. I don't like Pixie-Present. I want to be Pixie-Past. I've been lucky to have a few doctors who both get it and are willing to work with me to monitor and manage the pain. Sadly, I've also been treated like a drug addict when I've reported pain to other doctors. When I asked my breast surgeon if I should still be having pain 10 weeks after surgery, she said no, but that I'd need to see a different doctor about the pain. I was freaked out that something was wrong, not trying to get a drug fix. It seems there is a stigma attached not just to opiate addiction, but even to taking any pain-killers for any reason!
This article from the Boston Globe is timely.
Due to the current fuss over opiate-addiction, some medical professionals are now almost over-reacting. The second night after I had surgery to have the hardware removed from my back, a nurse refused me any pain medication. My stomach doesn't tolerate the strong stuff very well and I asked for an anti-nausea medication, and because it wasn't time for another anti-nausea pill, she refused to let me have the pain pill - the second night after surgery!
So let me take some time to give a personal face to the stories you read about chronic pain and dependence on pain medication. I'm not trying to get high. I'm just trying to get through my day. And I'm trying to find a way to deal with breakthrough pain, the pain that keeps me from doing all the things that people without chronic pain take for granted.
I want to be like I was.
So if you have not suffered a life-altering injury or illness and do not have chronic pain, indulge me this. Please do not suggest that I HTFU. When you hear of someone who has a long term dependency on pain killers or yet another celebrity who accidentally overdosed on pain killers, please don't call it a weakness of character. If I express frustration with not being able to do simple things, like oil my chain or lift my bike onto the car, please understand that I am working very hard to return to my old strength. And sometimes I need a little pharmaceutical help to get past that intense breakthrough pain. I can't get stronger if I can't tolerate the exercises I need to do to get stronger.
I still view this as a temporary disruption. Now it's time to get back to regular programming.
I've been working with my new doctor, and we've found a few options that work for the breakthrough pain and allow me to get through the exercises and longer rides. I've even managed to complete a few 200km rides in the last month.
So stay tuned for reports on some challenging events, sometimes completed with the aid of my pharmacist, and hopefully soon without.
It's a new and good life for Pixie-Future and I've got some fun rides planned.