BC Becky

Never thought I'd want to be a breast cancer survivor

Year: 2015

  • Message to my doctors: Do not tell me to lose weight

    We need to change this message. The entire concept of BMI is outdated, and yet, doctors are still using it to measure our well-being. It needs to stop.

    A message to my doctors, rather than making a remark about losing weight, perhaps you could enquire about my health? And then maybe, rather than comment on weight, you could provide tips that might actually help me get healthier, something like:

    • Eat a healthier diet … or even better, eat more salads / vegetables and less meat …
    • Do some strength training so you can be stronger …
    • Do some aerobic activity to help increase your endurance/cardiovascular health …

    Those are much better messages to send. They are concrete things that I can actually do!

    Telling me to lose weight only serves to make me feel bad about my body. It is also an improbable, if not impossible, task. If I knew how to lose weight, do you not think I’d already be doing it? It is even worse when that very same doctor is giving me medications that increase my appetite or take away the hormones in my system that help me to maintain a healthy body weight (but also help protect me from a recurrence of cancer).

    The reality is, BMI says that I’m overweight. It always has. It doesn’t matter how strong or how fit I am. I rode my bike across Canada and the damn BMI still said I was overweight.

    I’m getting stronger every day. My cardiovascular health is generally pretty darn good. I’m doing things that I could never imagine that I would do (like walking 32.5 miles in two days). If you to talk to me, you’d learn that I eat a healthy diet.

    Short of starving myself (which I’m not willing to do), there ain’t much I can do differently to cause weight loss. So please, stop telling me to lose weight. I’m getting stronger every day, that should be good enough.

  • What doesn’t kill you makes you stronger …

    I know that some people in my cancer-blogosphere (cancer bloggers that I follow) really hate the expression “what doesn’t kill you makes you stronger”. For so many people who are diagnosed with cancer it is the furthest thing from the truth. The treatments for cancer can do anything but make you stronger. And yet, this song speaks to me.

    What doesn’t kill you makes you stronger
    Stand a little taller
    Doesn’t mean I’m lonely when I’m alone
    What doesn’t kill you makes a fighter
    Footsteps even lighter
    Doesn’t mean I’m over cause you’re gone

    What doesn’t kill you makes you stronger, stronger
    Just me, myself and I
    What doesn’t kill you makes you stronger
    Stand a little taller
    Doesn’t mean I’m lonely when I’m alone

    The song itself talks about breaking up from a bad relationship. In some ways, I can visualize my breasts and the cancer that grew in them as that bad relationship. When I do that, then the lyrics really do speak to me. In addition, it has a really strong beat, so that it works really well as a workout song. It makes it easier for me to push myself when I’m trying to get some exercise.

    If I look back on where I was when I was diagnosed, and compare to where I am now, in many ways I am stronger. I was strong and felt healthy when I was diagnosed, but now I am stronger. Before, I would never have considered hiking more than 4 miles (6 km). Now, I know that I can hike more than 10 miles in a day. I’m not quite back up to riding the distances I did pre-chemo, but I’m pretty close. I am stronger!

    Am I better? I wouldn’t say that. I am still dealing with a lot of pain – mostly pain in my feet because of the neuropathy, which waxes and wanes (been waxing more than waning lately). It means that although I can walk 10 miles, I don’t do so without pain. It is a struggle, but I can do it, and it is something that I didn’t think I’d ever be able to do.

    One of the challenges I’m struggling with is the fear of getting stronger. I’m also afraid to lose weight. I’m afraid to feel well. I’m afraid that getting stronger, losing weight, and feeling well will be a signal that the cancer is back, because they were the things that happened just before my diagnosis. I lost about 20 pounds in the span of three weeks, and I was doing regular 50km bike rides, so I felt strong. Then I was diagnosed with cancer – turns out the sudden weight loss was not because of my exercise regime but rather the cancer. I need to learn to fight the fear head on. It needs to be OK for me to feel better. It needs to be OK for me to lose some weight. It needs to be OK for me to be stronger. It is no different than the superstitions that stopped me from saying I am cancer free.

    And so, with that, I’ve added the Kelly Clarkson song to my exercise play list, cause what doesn’t kill me makes me stronger is a pretty good motto for me right now. It works for me, so I’m going to own it!

  • This is my fight song …

    As we walked through the streets of San Francisco and into Marin County we heard this song over and over again. It isn’t actually an anthem for cancer, rather one for mental health – but it feels so appropriate. Mental health and breast cancer are somewhat inter-linked – in that breast cancer and its treatments certain put a strain on your mental health.  So, I bought the song and loaded it onto my iPod shuffle (the one I use for exercise). I’m looking for suggestions for other new songs that might be appropriate for working out. It is time that I retired some of my older music (Bon Jovi, Bryan Adams, and Alanis Morrissette).

    This week Rebecca challenged cancer bloggers to share more positive stories. Personally, I try to share both – the good and the bad. But she is right. It is often much easier to find the words when you are writing about the challenges – expect for the words “I am cancer free“. For me, those were challenging words.

    One of the things I’ve been struggling with is headaches. I’ve mentioned before that I hoped that the CPAP machine would be my panacea. It hasn’t been long enough to know if that is the case. I’m still hoping, but also dealing with jet lag after my trip to Ontario last week.

    At my last oncologist appointment, he suggested that I could take a month off of tamoxifen. He said this after telling me ‘I am a cancer doctor, not a headache doctor’ (said in a jestfull tone). At the mention of going off of tamoxifen, I cried. It is hard to contemplate the idea that I should stop taking the thing that might just be stopping the cancer from progressing. It is a scary thought. After much consideration, I did decide to stop. I figured that if I was going to a conference for three days, and there was a slight chance that the tamoxifen was causing the headaches, that was as good a time as any to go off. I started taking tamoxifen on my birthday – back in early February. I was still recovering from my major surgery. As a result, it was difficult to tell what was a side effect of tamoxifen and what was my body healing. I recall writing about a fog lifting.

    Two days after I stopped taking tamoxifen, I felt a fog lift. I felt that for the first time in a long time I could actually concentrate on things in the afternoon. Previously, I managed to do most of my ‘work’ in the morning. My afternoons were mostly spend running errands or exercising. This was, in part, because I couldn’t think straight in the afternoons. I had bad headaches but also a fog that slowed my ability to think.

    So, where does that leave me? That is a good question. In the next couple of weeks I’ll be doing a few blood tests (we need to see if my body is in menopause or not). From there, a new treatment plan will be hatched. I’ll meet with my oncologist again, and decide what medications I’ll take. Tamoxifen isn’t the only option. There are other choices – some of which are more effective against the cancer, but come with a different set of side effects. I’ve decided to not worry about it for now. For now, I’m going to enjoy my tamoxifen vacation – and try to feel healthy and strong again. And with that, I’m off to the gym so that I can listen to My Fight Song while sweating and working out some of the stress in me!

  • Ground control to Major Tom …

    Before bed each night, I think of this song as I put on my new CPAP mask. I had originally started out with the nasal pillow variety of the mask but that didn’t work for me. I sleep too much with my mouth open, so the nasal only mask just ended up filtering the humidified air through my nose, out my mouth, and onto my pillow. Not exactly effective.

    The new mask is working much better, but it seems a little extreme to me. When I put it on, I find that I’m imagining myself as a fighter pilot or astronaut or some such thing. Why not make some fun out of it?

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    The good news is, I’m starting to get a decent night’s sleep. My apnea/hypopnea index with the CPAP machine is down to what is considered ‘normal’ range. Most of the time, this means I’m waking up feeling well rested. Since I spent the last week travelling, it isn’t really a great test of new system – other than to validate that I can indeed travel with it – it is easy to pack up and set up, such that it isn’t difficult to do for a single night. What we haven’t figure out yet is what we will do for camping. I can choose to go without – however, that means I am more likely to wake up feeling less well rested (not ideal for a multi-day trip).

    Although the sleep doctor told me that the CPAP is non-addictive, but also will not cure me, I’m still kind of hoping that it will re-train my stomach and chest muscles how to breath deeply during sleep. I’m holding out some hope that the CPAP will be a temporary therapy rather than a permanent one – but of course, I’m also highly aware that this might just be wishful thinking. Until then, I’ll just have to continue imagining myself getting ready to fly off this planet every time I go to bed 🙂

  • There is harm in giving false numbers

    This week, Ann did the footwork (thank you) and posted about a false statistics that has been made very popular within the breast cancer blogosphere. I must confess, that I am guilty of using this false statistic. But worse, this false statistic has caused me great amount of unnecessary stress and emotional harm.

    What is this statistics? It is the “30% of early stage breast cancers go on to metastasize at some point”. I’ve seen many different articles that talk about how “early detection” doesn’t necessarily save lives, because we do not know what is causing metastasis, and some people who do everything right still get metastatic disease. However, saying that this will be true for 30% of us is just plane scary. It adds to the fear mongering that is all too present in our culture today.

    One of the biggest challenges of being a part of the blogging community is that of critically assessing anything that is posted on blogs. It is something that I often do, but for this one statistic, I did not. I found it ever pervasive, and thought that someone must have come up with that number some how. It is also too easy of a statistic to use. It is useful when trying to make a point. But, it also does a lot of harm – and that harm is mostly to those of us who have undergone treatment for early stage disease and are trying to get on with our lives. We don’t need that extra fear of 30%, especially when the number might actually be much lower for a given person.

    If there is no national register for metastatic disease, and no data on how many people progress to metastatic breast cancer, then how the heck could one even come to that number in the first place? There would be no way to know that information.

    So, now I need to reprogram my brain. I need to remind myself that the number is a false one. My chances of survival are much greater than 70% (or truly, since I had three primary tumors – .7*.7*.7 = 34% – yikes). The reality is that I did catch it early, and I did treat it aggressively. I have no idea what my prognosis is, but my care team are certainly not treating it like 34% …

    This got me looking. According to the Komen website, someone in my age rage with ER+ breast cancer has a 94% survival rate. Since I had three cancers, one might wish to multiply this so (.94*.94*.94 = 86%) – which is a far cry from the false statistic above.

    The other challenge with the current statistics is that there have been significant advances in the treatment of HER2+ breast cancer (not the kind I have). So, women with HER2+ cancers who would have had a significantly poorer prognosis 10 years ago are expected to live cancer free for a lot longer. In this case not enough time has passed – not enough people who had HER2+ cancer, and received the targeted therapies, have died of natural causes yet – they are still alive. So the whole statistic in this area is hugely unknown.

    As a survivor, the only statistic that really matters is 1 – that is, it really doesn’t matter what the numbers fall out to be because you already drew the unlucky straw, and as my oncologist is want to say “it is what it is”. However, propagating a false statistic in order to try to encourage people to donate more money to research (or funnel more money into metastatic research), does not serve our community well. It only causes to feed the flames of fear of recurrence and progress – flames that most of us do not need fed. We’ve been fighting the fire long enough, we need to put it out and move on with our lives.

  • I am cancer free

    It is amazing how difficult that was form to type and how difficult it was for me to say. It is almost as difficult as it was for me to say “I have breast cancer”.

    I’ve actually been cancer free since December 17, 2014 – when the last of my breast tissue was removed from my body and my new ‘not breasts’ were created. However, whenever someone asked, I always said it with the caveat as far as I know. I did not want to jinx it, and say it. But that has meant that I’ve been carrying the burden of not believing it. With every new (or old) ache or pain, I fear that it is cancer.

    You see, I’ve had a variety of doctors appointments this week. Mostly 3/6 month checkups, but also a bit of a scare over headaches. I had both my oncologist and my breast surgeon say it No evidence of disease. Actually, it was amusing. When my breast surgeon walked in, I told her, I needed to hear the words. I needed her to say it. Her comment was that she writes it down all the time. She said it multiple times during my checkup. All clear – no evidence of disease – you are healthy, get on with your life, next checkup in a year – but if there is anything of concern, don’t hesitate to call/make and appointment.

    Now that all my doctors have told me, I am finding that I just needed to say it. I need to say it a lot. I need say it until I can say it without crying. I need internalize what I’m saying and actually believe it.

    After my appointment, I went for one last visit to my tree.
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    Most of my non-cancer related healthcare is at PAMF. I’m going to have to start calling them first, rather than calling oncology first. As I walked back to the car after taking the picture, I realized that I never want to see the inside of the Stanford Hospital again – ever!

    I then went to the gym. I practiced saying I am cancer free, first with my friend there, then with others in the group (my friend kept encouraging me – or more like making me). I still cannot type it without crying, but I’m getting there. So one more time, I am cancer free.

  • Moving beyond a 3-month horizon

    I had a couple of follow up doctor’s appointments yesterday. I was struck by how everyone seem to be commenting on my hair – then I realized, the last time I was in to see these doctors I only had a thin covering of grey hair, not a head full of dark hair. So, I guess, yes, my hair has grown quite a bit (as I write this I’m adding some colour to again cover the bits of grey that are popping out).

    Let me start by saying – it is not cancer. I actually had my oncologist agree to the statement that as far as he is concerned, I have no evidence of disease (These would be the good words that I specifically needed to hear). However, I’m having headaches. I have been having headaches for months. I had already seen my oncologist about my headaches once already. When talking to my friend, she encouraged me to just ask for what I wanted – and so – rather than skirting around the issue – I asked point blank for a brain MRI. I wanted to rule out cancer. My oncologist agreed – which in turn made me really nervous. My oncologist is typically not one to order tests when they are not necessary. And so, over the last week, I’ve been doubly stressed – headaches and worries that the cancer might have spread to my brain (highly unlikely – but still the headaches became a constant reminder). So, on Tuesday morning I had a brain MRI. On Thursday afternoon my oncologist told me that my brain is normal for someone my age (yay). Now, this doesn’t address the headaches, but there is some hope, that my CPAP (aka my panacea) will resolve the headaches. That or one of the many medications I’m on.

    And so, now I am taking more deep breaths. I’m hoping that the headaches stop soon, but at least now I know that I don’t have breast cancer metastasis to the brain. Over the last couple months, I would often make decisions based upon the question would I still want to do this if I had mets? I realize now just how much of that is catastrophizing (thinking only of the worst-case scenario).

    I’m hoping that I can focus a little better now. I also noticed that I had only been allowing myself to make plans within a three month window. I have a trip to Niagara and Toronto next week (seeing my parents for the first time since my big surgery, then presenting at a conference). I have another trip planned for early September – presenting at two conferences in the UK and visiting several people while there. We have talked about a trip to visit parents for American Thanksgiving, but I wasn’t allowing myself to book anything. I wanted to make sure I was healthy first.

    I am now going to challenge to myself to think of my life beyond 3-months. I am going to challenge myself to make plans for something that is further in the future. I am going to try to move beyond my three-month horizon!

  • My Panacea

    My panacea … or at least that is what I’m hoping it is.

    Not long after my major surgery in December, hubby noticed that I wasn’t breathing well when sleeping. I had started to snore (something I’ve never done before, honest) to the point of actually waking myself up. He also heard that my breath was shallow – it wasn’t so much that I was stopping breathing, just that I wasn’t breathing well.

    I certainly notice the problem anytime I slept on my back. After surgery, this is really the only option, until you are able to sleep flat – which after my last surgery was about 3 weeks. Sleeping on my back meant more snoring, and more waking myself up. I was not getting a good night’s sleep.

    I asked for a referral to the sleep clinic. After an absurd wait for an initial appointment, I was scheduled for a sleep clinic. During the initial appointment, the attending (a very old guy) took one look at my throat and said that I had sleep apnea. He spoke in code to the fellow (various measurements and such), and had me book a sleep study. Unfortunately, just as that was scheduled, I got a cold with a nasty cough. It wasn’t advisable to do the sleep study while sick, as it would make my results more extreme then perhaps they would otherwise be. And so, I rescheduled, and waited. It seemed like forever.

    Finally, on May 26 (about 3 months after first reporting symptoms), I spent the night at Stanford and did the full sleep study. I was surprised when they did not wake me up in the middle of the night. Whatever was happening was not considered bad enough for an immediate intervention. This was both encouraging and discouraging – as I knew something was going on – something was messing with the quality of my sleep.

    Two weeks later the results arrived in the mail. Obstructive sleep apnea and hypopnea. Mild, but not nothing. Fortunately, I did not have any cardiac events in the night. My follow up appointment wasn’t booked for another month, so I called the sleep clinic to see if I could get in sooner. After a little discussion (and prodding cause I still wasn’t getting decent sleep), I managed an appointment for July 2nd.

    During the follow up appointment, the attending did a great job explaining things. The concern was less on the apnea (absence of breathing) and more on the hypopnea (shallow breathing) which brought down my blood oxygen levels. She recommended that I try out a CPAP machine for at least three months to see if that makes things better. I am now the proud owner of a brand spanking new ResMed AirSense 10 AutoSet for Her CPAP machine. This, I am hoping is my panacea. I am hoping that getting a good night’s sleep will help with the fatigue I’ve been struggling with. I’m hoping that it will help reduce weight gain (maybe even help with weight loss). More than anything, I’m hoping to have more energy and focus – less fog brain!

    What was particularly interesting was that during my first visit, the discussion was around tamoxifen, and how when the estrogen is suppressed in the body, it can trigger sleep apnea. It is in part why men are usually diagnosed in their early 20s and women are usually diagnosed after menopause. It was very unusual for them to see someone of my age in their clinic.

    During my second visit, the attending (a different one – this time a very fast talking women who I quite liked) casually mentioned chest mechanics and the role they play in hypopnea (shallow breathing that typically happens during what should be the most restorative part of your sleep). This got me thinking – you see, as part of the major surgery that triggered this whole thing – and before I even started taking tamoxifen – I had symptoms. This is the same surgery where I had all my breast tissue removed, my stomach tissue harvested, relocated and reshaped to form my new breasts – which also happen to sit higher on my chest than my original saggy breasts (yay, no need for a bra). What this means is that both my stomach – which is now rather tight – and my chest – which now has fake breasts that weight different – have different mechanics. The combination of the two does not bode well for deep breathing – especially deep breathing while asleep.

    I did a quick survey of folks who had DIEP flap reconstruction, and several others reported that they too had sleep apnea/hypopnea that was diagnosed post-surgery. I think it would be an interesting thing to study – to see if there is actually a correlation – to see if one of the potential side effects of this particular surgery (or any reconstruction for that matter) is sleep disorder.

    Either way, now that I have my new fancy machine, I am hoping to get a few good nights sleep, and with this hope to be feeling a whole lot better sometime soon! Crossing my fingers that this CPAP is a panacea for me!

     

  • 15 Random things about me

    In a post last week, Nancy challenged fellow cancer bloggers to write 15 random things about themselves. I think this is such a great way to help demonstrate how cancer bloggers are not just about the disease – we are people too – but also it provides a great way for us to connect on a more personal level. It allows us to see what other things we might have in common. I have thoroughly enjoyed reading the random things about Nancy, Elissa, Beth, MarieRebecca

    1. My closest online friend is someone I have never (not yet at least) met in person – but I’ll get a chance to meet her when we both attend a conference in Manchester UK in September. She was the first friend I told about my diagnosis. She has been one of my best confidants throughout this experience.

    2. I’m a bit of an exercise junkie, but you would never know it to look at me 🙁 … I don’t look like someone who is fit … but I do love to ride long distances …

    3. I’m an extrovert but I love working from home. I love the social aspects of being in an office, but I hate the constraints of 9-to-5 and the noise/disruption means I find it difficult to do any meaningful work.

    4. I sucked at English in school. It was by far my worst subject. I find this particularly amusing as I have since worked professionally as a technical writer (and I’m pretty good at it!).

    5. I actively blog on three different blogs – here, my academic blog (http://rjh.goingeast.ca) and my travel blog (http://goingeast.ca).

    6. I’ve travelled around the world twice – first as a business trip back in the days when Nortel made money. In my first career, as a project manager at Nortel I delivered a sales training in Maidenhead UK, Beijing China, then Sydney Australia. That was back in the day when high tech companies paid for business class seats on airplanes! I spent my weeks teaching and my weekends on planes. I was exhausted when I got home after three weeks. My second trip around the world involved no airplanes, and much of it was done on a recumbent bicycle – it was also were I started blogging more seriously – http://goingeast.ca/blog

    7. I have crossed the three major oceans (Atlantic, Indian, and Pacific) as a passenger on a container ship. I’d love to do this again one day (assuming my health allows for it). It was a great way to cross the ocean and rest up before hitting the open road again.

    8. I started my undergrad as a physics major. I somehow ended up starting university without knowing what an engineer was! In my world, and engineer was the person who ran the engine room on a ship (more like a mechanic for boats). I had no idea that engineering as a career was the practical leg of physics.

    9. I have a completely irrational fear of accidentally jumping off of bridges. Not falling off, jumping off. Like something will happen in the sudden moment as I cross a bridge that will cause me to jump off when I didn’t mean to.

    10. I grew up in a small town that doesn’t exist anymore – see https://en.wikipedia.org/wiki/Kemano – it was perhaps one the prettiest places on earth.

    11. I love being out in nature – I’m not sure if I could live in nature unless it had a high speed internet connection – but being out in nature and especially places with big trees, recharges me.

    12. I identify as a Unitarian Universalist. I was quite active in the First Unitarian Congregation of Ottawa for about 10 years. We haven’t really been able to find a spiritual home here in California, but I still identify as a UU, even if I don’t actively go to a UU church.

    13. I love to cook and entertain. One of the things I miss the most about being in this small apartment in California is that I cannot have people over for dinner (we don’t have the space to host more than one person). I used to love hosting dinner parties – cooking for many people. We used to do a Turkish Breakfast fundraiser, where I’d make a whole bunch of different treats from my travels to the Middle East. Wish I could do that again.

    14. I love being a traveller rather than a tourist. I’m not fussy on all those touristy type things. I’m so glad that when I go to the UK in September, I’m going to be staying in a couple of people’s homes – not just hotels. Seeing how people live really helps to better appreciate the culture they live in.

    15. I never thought I’d ever go on a 10 mile hike, never mind walk 32.5 miles in two days! I’m so looking forward to being able to do more long walks (once my shin splints heal). This opens up the door to so many more places where I could hike!

    16. (one more) … I love taking selfies. I’ve even contemplated getting a selfie stick. I, apparently, even enjoyed taking selfies when I was a child! Check this one out:

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    This has been a fun post … I encourage any of my readers to jump and join the 15 random things about yourself challenge!

     

     

  • Power of 39 #powerof39 #avon39SF

    On the first day, I didn’t really buy into all the hype about the #powerof39. I didn’t really get what it meant to participate in such an event. I’d had friends who had participated in a similar event in Canada, but I didn’t really understand what it was all about.

    I signed up for the Avon Walk back in August when I was still doing my first type of chemotherapy. At the time, I was walking regularly and it gave me something to focus on. I even wrote about how it was part of my stretch goals. However, this was before neuropathy. It was before I decided to have reconstructive surgery – and particularly a type of reconstructive surgery that had a long recovery period.

    After my major surgery, I wrote about my new years goals (rather than resolutions). At the time, I still had hopes of recovering and completing the Avon Walk. This was when I thought that I would heal from my surgery. It was before I had debilitating knee and joint pain from taking too much Cipro, which I was taking because I had surgical drains. It was before I realized that I would need another surgery to fix the holes in my stomach. It was also when I thought my neuropathy would heal a whole lot quicker than it has.

    In April, I was starting to feel a little better, however, I was still only able to walk 6km. I knew I was not training nearly enough. I had resigned myself to walking 4-5 miles and then taking the sweep vehicle. I could not possibly see myself getting past that 4-5 mile barrier. Even in June, when we took a week of vacation mostly to train for the Avon walk and explore the Eastern Sierra’s. I managed to hike for five days in a row – with the longest hike being 6.3km. After returning from vacation, I managed a 10km walk. That inspired me to try out a longer hike the weekend before the Avon Walk. I managed two epic hikes of 10-miles each, on the Friday and Saturday before the walk. If I had been following any of the official training plans, I should have been taking the weekend before the walk off – but this was really the first time felt well enough to challenge myself. And, it meant that I went into the Avon Walk with more confidence than I otherwise would have.

    I was encourage by my walking partner. My Aunt Sharon from Port Colborne in Canada, flew down to walk with me (we were both disappointed when the Avon Walk folks said there were people from 48 states represented at the San Francisco walk, but they didn’t mention that there was at least one person from Canada!) – anyways, I was very glad to have a walking buddy, but also glad that she pushed me. In the weeks leading up to the walk, she mentioned that she was feeling ready and wanted to attempt to do the entire distance. This provided me with a little extra encouragement to keep training and to give it a try. I started focusing more and more on walking, rather than biking or swimming.

    And so, on Saturday, I started walking. There were over 2000 walkers for the Avon 39 SF walk. We made many rookie mistakes – we didn’t dress right, we didn’t start quickly enough, and we didn’t rest often enough (in part because we didn’t start quickly enough).

    My first attempt at a weekend charity event, was the weekend MS Ride in Ottawa back in 2010. I mostly did it so that I could have the background in which to write about such events in a cycle touring book I was working on. At the time I did not write about our experience. We didn’t really enjoy it. We found that the people generally rode with their friends in groups. There was no space for someone who wasn’t part of a group. We met one person, but didn’t stay in contact. Really, the only reason we met that other person was because he was riding a trike and we were riding recumbents (which is usually enough to have people want to talk to us).

    We found the same cliquiness with the Avon Walk. I tried several times to engage the people walking around me in conversation. They just didn’t seem to want to talk. So we mostly just talked to each other. I was very glad to have my Aunt as a companion on this walk.

    One of the groups at the Avon Walk is the group of non-group people, known as the Solo Strutters. They were identified by people wearing blue hats. Even though I was in a team with my Aunt, I now wish that we had also joined the solo strutters. The blue hats were meant to help people identify each other – but they also provided a signal – one that you were walking alone and willing to engage in conversation with others. The hat was a way to say “come talk to me!” This goes to our first rookie mistake – not dressing right. Everyone was in pink and many people were decked out is practical yet fun outfits. I wore my yellow shirt the first day, largely so that I could be found in a crowd – but it also meant that I wasn’t expressing the “I’m part of this movement” vibe. Scott, my husband and designated sherpa for the event, found that he needed to wear something pink so that he was identified as someone that was a part of the event (even if not officially).

    Our second mistake was that we did not position ourselves at the front of the pack at the start. With so many walkers, we ended up near the tail end early on and had difficulty recovering from that. The first two miles were painfully slow, as traffic lights and narrowing paths caused the walkers to spread out. I can walk pretty well, but I cannot stand well. Walking slowly is also really difficult – so the combination of standing waiting for the opening ceremonies and walking slowing for the first two miles didn’t set me up well. We also stopped at the first rest stop to pee – which meant standing in line to use the porta potties. This cost us about 30 minutes, which we were both not walking nor resting – rather we were standing in line. To do it again, we’d have stopped at one of the several open coffee shops, grabbed a good cup of coffee, and used their facilities. Our feedback for the organizers is that they need more porta-potties at the first water stop of the day – as everyone seems to need them!

    Being at the end of the pack meant that we didn’t spend much time at any of the rest stops. Our third rookie mistake is that we didn’t actually rest. Mostly the stops didn’t really have a place for you to rest. They lacked chairs – and getting up off the ground (or curb) wasn’t easy for either of us. So, instead of resting, we chose to keep walking. Our plan was to take a bit of a longer rest after the Golden Gate bridge, at the lunch stop. Then we would power on. Unfortunately, just after grabbing our lunch, as we were half-way through our sandwiches, the announcement was made that we needed to either start walking or get on one of the buses to base camp. The lunch stop was closing!

    We powered on and made it through to another rest stop before I finally had to say I couldn’t continue. We walked 17 miles.
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    As we waited for the sweep vehicle to take us to base camp, we got a chance to met ‘the caboose’ – who is the sweep cyclist who officially is the last person on the walk. No walkers are allowed to enter a checkpoint after the caboose has left. The caboose provided encouragement for the walkers at the end of the pack – but also needs to tell people that they have to get into the sweep vehicle if they won’t make the check point on time. It is a tough job, but she did it with a smile. It was nice to chat with her a bit as they closed up the checkpoint. Once the sweep vehicle arrived, we were whisked away to base camp.

    Arriving at base camp, we were cheered and congratulated as we walked the last few steps through the arches that signified the end of day 1. Neither of us felt particularly celebratory and didn’t feel like we had earned the cheers. We didn’t make it to base camp; however, we did successfully walk 17 miles – the further I have ever walked in my life.

    We approached day two differently. I was prepared to take a sweep shuttle between a couple of the earlier stops, so that I had the energy to make it over the Golden Gate Bridge and from the last check point (Chrissie Fields) to the closing. I wanted to earn the cheers as I crossed the finish line. My Aunt wanted to try and walk the entire route – and so we discussed how I might get on a shuttle and we would find each other at the closing ceremonies.

    We got off to a good start. It certainly helped that when we arrived back at base camp, we had a decent breakfast right before we started walking. Breakfast had not been provided on day 1, which meant we ate at the hotel more than an hour before we started walking. Eating just before gave us a little more energy to push ourselves. At the first intersection we discovered that we were being cheered on by the same group of people that cheered us on the day before – the same crew from the Moto motorcycle club and the San Jose bicycle police, as well as many other cheerers – who we saw over and over again throughout the day. Seeing the familiar faces, and being recognized made us feel a lot more part of the community.

    We started out day 2 near the front of the pack. When we reached the first checkpoint, I was still feeling good, so decided to continue walking. Rather than stopping and waiting in line for the porta-potties, we pushed on to the second stop. This kept us at the front of the pack and ahead of the lines. The second rest stop also had chairs, so we intentionally sat down for 5-minutes, took a selfie, and rested. Then we continued walking, repeating this process at the following rest stops.

    I did well right up until the Golden Gate Bridge. As we were coming into Fort Baker my shin splits were acting up – truth be told, they started up on day 1, but I was mostly able to walk through the pain. They started to get bad before the bridge. I was OK walking up or down hills, but was challenged on the flats. I called in my sherpa (Scott) to come rub down my shins with some Voltaren gel – hoping that would help.

    As I walked off the Golden Gate Bridge, I was in horrible pain. I decided to pop by the medical tent, in hopes of seeing Laurie – my physical therapist who happened to be a volunteer at the walk. As luck would have it, she happened to be at the medical tent. I got in the queue to see her, and rested up for the final very flat 2.5 miles into Fort Mason. She did a quick bit of massage on the worst of the shins (my right), and wrapped some ice on it. They tried to encourage me to take the sweep vehicle, but I was having none of that. We were just too close – I knew I had it in me to finish. So, I was directed to remove the ice after 15 minutes, and allowed to continue. We pushed on and made it through the closing gates about 30 minutes before the caboose!

    We arrived to cheers that felt so wholeheartedly authentic. I should mention that one of the highlights was seeing the same people cheering us on over and over again. The folks from the SF Moto crew would be cheering us on and directing traffic as one intersection, and once the caboose crossed, they would pass us on their bikes, and we would see them again at a further up intersection directing traffic. It got to a point where they recognized us – and us them. So, on day 2, the encouragement felt very personal – somewhere along the route on day 2 my experience had changed – I started to really understand what the power of 39 was all about.

    Just after crossing the finish line:
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    The closing ceremonies were a particular highlight. They grouped us by volunteers, walkers, and survivors. They had the volunteers walk to the stage first, and then fill the areas outside the barricades. Then they had the family and friends walk to the front and go to the outside corral, then walkers walk to the stage going to the inside corral, so they could greet the volunteers as they went to the stage and filled in behind the walkers and further up the coral. Finally, they had the survivors walk to the stage. Just before we began to walk, I found my survivor friend who also completed the walk and gave her a big hug! We both cried as we walked to the front, being cheered on by those that helped encourage us in our walking. I saw so many familiar faces cheering us on. It was truly very touching. We danced. They presented several grants to help show us where the money was going – it was good to see the biggest grant on display – $500,000 – to a research project that was looking at medications to help make chemotherapy drugs more effective with less side effects specifically for those with metastatic disease. There were also several smaller grants to community-based groups that provide nurse navigation support to under-served populations in Northern California (specifically hispanic and aboriginal).

    Overall, I left on a high note. I’m really glad I did it. I wish I was able to walk the entire distance the first day, but my accomplishments were huge. I didn’t expect that I could ever have walked 17 miles one day and 15.5 miles the next.

    Will I do it again? I don’t know yet … I’m seriously thinking about it. I really did find that by the end of day 2 I was having a really good time. I enjoyed the energy. More importantly, it gave me a reason to push myself. It helped me focus my training. It provided a goal that has made me strong. I never, ever, would have contemplated a 10-mile hike, and yet, I managed two back-to-back the weekend before. I also didn’t think that I’d ever be able to walk far enough to manage The Camino de Santiago (on my bucket list). I need to be able to walk a minimum of 18km / day in order for that to be feasible. It now looks possible!

    We didn’t take too many photos on the first day, as we were focused on just walking. Since we were taking rest stops on the second day, we took that opportunity to take regular selfies, which I posted to my mobile blog: http://rjhmo.tumblr.com. And here is a gallery of pictures from our walk: http://dttocs.smugmug.com/Other/20150712-avon-walk/20150712-avon-walk-good/n-BZbfGp

    So for me, the Power of 39 was about being a part of a community – a very temporary one – about the energy to push yourself further than you thought possible – and about taking one step at a time until your reach your goal. You might just surprise yourself, I did!

     

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