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Photo by Jason DeVarennes

Sunday, June 19, 2016

Sorry for the Interruption. Now we return you to normal programming!

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.



11 comments:

  1. What a remarkable post and inspiration you are! I empathize because I had a cycling accident in 2005 that left me with chronic pain as well -- nothing like the level that you suffer with, but enough that I didn't ride nearly as much for years afterwards, tried a TENS unit, PT, stretching, strengthening, different bikes, different bike fits, yoga, and on and on. I am still not the cyclist I was before my accident; however, I am also 11 years older at this point, so I do give myself a bit of a break there. I actually had my highest mileage year ever in 2014, so despite the fact that I was not and am not as fast as I used to be, I have figured out how to work around the slight residual pain pretty successfully and still feed my passion for cycling. I don't ride the kind of miles that you did and still do, but I still love to ride and am thankful I am able to. Wishing all the best for you in your continued recovery!

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    1. Emily, Thanks for the kind words. And I am happy to hear that you are able to maintain the passion for cycling while dealing with residual pain.

      Pamela

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  2. Pamela - Thank your for writing such an open and honest post. I've loved following along on your photos and such, and honestly have been amazed at how much you *are* doing. I'm so sorry to hear that through it all you have been dealing with pain. As someone who is currently in medical school I can tell you there is so much of a backlash to the opioid epidemic that there are definitely doctors who are refusing to prescribe at all. It's sad and frustrating because it means people aren't getting the pain relief they need. Despite the admittedly cruddy way it was presented to you, pain specialists can and do help lots of people - if you find a good one they should be able to help you should you need more relief than you're getting. They have lots of tricks in their bag. Here's hoping that you can stop thinking about all of those simple things that stop you in your tracks soon - because you've gotten strong, and get back to being able to focus on the things you love. Hugs from NC.

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    1. If only it had been presented as a referral to a pain specialist! It was more that she just didn't want to deal with anything other than the specific surgical issue. Fortunately other doctors have been more willing to look at the whole/big picture. Thanks and good luck in med school. And never forget that good bedside manner can have an amazing positive outcome for a patient!

      Pamela

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  3. This post was inspirational. Thanks for making the effort to do the posts. Could you do a post on your new bike? Thanks. Jim

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    1. Hi Jim,

      Thank you. New bike post will be coming soon

      Pamela

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  4. Interesting post, Pamela. I'm thinking it was likely difficult to write without going too far off the deep end.

    I thought of Tom Florian when reading it; Dr. Tom is a pain specialist; also a randonneur and a speedy guy on a bike (most mornings riding pre-dawn with Maria Parker).

    You will also know that I thought of Lynn. And I just can't write more on that front.

    And, I also thought of our mutual friend, Alan Johnson, who still has daily pain(s) from being hit in 2002. Alan recently told me that some days, but not all, he needs serious pain medication.

    You have my fervent wish that your pains will subside, and that at least some of Pixie-Past will be part of Pixie-Future.

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    1. Hi Martin,

      It did take a month to write and re-write the post. I really wanted at the end to project a positive message.

      Pamela

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  5. "The tears were streaming down my face. I had been fighting the most ferocious headwind I had ever ridden a bike into for hours and hours, all alone, just hoping to see the sag vehicle, so I could stop this torture and get off the bike for the day." You have been an inspiration since I read those words two decades ago. My wife and I actually drove past Pactour that very day on our way to Yellowstone but our car didn't seem to mind the headwind except for needing a refill a little earlier than expected. I feel foolish offering you cycling advice, but maybe here is another time when Sheldon Brown can be our guide. As conditions change, our bikes change with them. And remember, Marian Savage turns 60 tomorrow - her time, our time, maybe we missed it.

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    1. Hi Douglas,

      Thanks for the memory. That day into West Yellowstone is still the gold standard by which all other headwinds are judged. It is a day I will never forget and one I am very proud to have gotten through.

      I have made many adjustments to expectations and such over the last few years. And I keep in mind how Sheldon dealt with his changing circumstances after he became sick.

      Thanks for the heads up on Marian's birthday. How do you know my Kiwi friend?

      Pamela

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    2. Met Ross and Marian when they came over to ride Tour BC, then hosted them the following year when they came for Cycle Oregon. That's where they did their first real ride on the tandem they bought over here.

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