BC Becky

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

Category: Navigating the new me

  • Life doesn’t suck

    Life doesn’t suck

    There is no easy way to put this, January was a pretty sucky month in cancer land. It seems like from the moment I returned from Epic some celebrity or another died of cancer. To top that off, at least a couple of bloggers died, and several others had disease progression. Closer to home was learning that a couple of the ladies from my support groups were diagnosed metastatic – one who followed me through chemo by about one or two weeks. In all accounts, there was a lot of sad news in cancer land.

    However, I’m doing well. This is actually really hard sometimes. I’m doing well, but the people around me are not. There is that pang of survivor guilt that happens. I want to celebrate, to shout out, I’m having fun, I’m doing well, and yet, I’m surrounded by sadness. I feel guilty because I want to share the good things that are happening.

    Now I’ve blogged before about how I think we need to remember to blog when things are going well. The breast cancer blogosphere is full of stories of the hardships of breast cancer. It is full of the authentic accounts that help us prepare, help us empathize, help us understand the real impacts of the disease. What is isn’t full of are the stories of people who are doing well – I don’t mean the feel-good stories. There are lots of she suffered, now she is cured, lift is a gift, rah rah rah stories that are designed to make people who don’t have cancer feel better. By the way, I learned a new term for that today “healthy privilege“, which is the view of the world from the healthy persons perspective. But I digress, my point is, I’m doing well and I want everyone who follows me to know about it.

    I’m not doing great, and I’m not finished recovering, or any of that. But I’m not doing poorly either. My foot still hurts, I cannot exercise.  But my life is starting to fall back into rhythms that I enjoy. I’m teaching again and loving it. I’m back to school again and loving it. I had a great birthday party and was reminded of all the amazing friends I’ve made over the last two years. So, for right now, life doesn’t suck.

  • What Maslow & Bloom can teach us about cancer survivorship

    What Maslow & Bloom can teach us about cancer survivorship

    Although healing and curing are different, they are entwined. For any cure to work, the physical healing power of the individual must be sufficient to enable recovery to take place. But healing goes beyond curing and may take place when curing is not at issue or has proved impossible. Although the capacity to heal physically is necessary to any successful cure, healing can also take place on deeper levels whether or not physical recovery occurs. ~ Michael Lerner in Choices in Healing, 1998, p.14

    I’ve been reading the book Picking Up the Pieces: Moving Forward After Surviving Cancer by Maggee & Scalzo (2007). In it they talk about the difference between curing, healing, and recovering.  The book quickly jumps to the idea of recovery and the various stages of it glossing over the curing and healing parts, however, I find myself stuck back in the differences between curing and healing.

    Curing is the goal of our doctors when we are diagnosed with early stage breast cancer. They do their best to recommend treatments with the goal of curing us of cancer. Curing is difficult to measure. You cannot know if someone was truly cured of the cancer until they die of something else. There could be a low probably of the cancer coming back. There are some attempts at measurement, such as the five-year survival rate, but those numbers are problematic at best.

    One of the challenges of survivorship is that time after your doctors tell you are cancer-free (or in remission) or finished treatment (sometimes there are significant treatments such as chemotherapy that occur after your are cancer free – it really depends on the specific situation and treatment plan). In essence, what happens is, that at some point your doctors have done all they can to “cure” you. But they may not have done everything that you need to be healed.

    Now that brings me over to our friend Maslow. Maslow proposed a hierarchy of needs which is often portrayed as a pyramid. See the Wikipedia listing here: https://en.wikipedia.org/wiki/Maslow%27s_hierarchy_of_needs. In education we talk about the lower needs must be met before the upper needs can be addressed. Although this isn’t strictly true, it does have some merit. The pyramid goes like this (from bottom to top): physiological, safety, love/belonging, esteem, self-actualization. So while we are looking at taxonomies that are often represented by pyramids, we should take a step over to look at Bloom’s taxonomy. It looks at different levels of knowledge and is often used in instructional design as a way to categorize learning objectives. Bloom’s categories are knowledge, comprehension, application, analysis, synthesis, evaluation.

    What does this have to do with cancer survivorship? I can see some parallels to the idea of curing, healing, and recovery. When we are in active treatment, our focus is on curing, it is at the bottom of the pyramid. When we are learning about our cancer at this point, we are interested in obtaining knowledge. Our focus is on the facts. We want to comprehend what we are being told. Our lives are lived in the lower levels of both Maslow and Bloom’s. We are just doing what we are told to do and trying to make it out the other side alive – with the hope of being cured.

    After the acute treatment phase, there comes a time when our doctors tell us they are done with us – at least those of us who our doctors are trying to “cure” – the conversation and process is very different for those living with metastatic disease. This is were we are looking towards the higher levels of the taxonomies. We were trying to synthesize what has just happened. We seek greater meaning making (or not). We become ready to stop focusing on the day-to-day that was treatment, and start picking up the pieces and getting on with our lives.

    One of the other ideas this book has brought up is that there is a gap between where we want life to be and where it is. More than that, there is a sense of wanting to go back to that time before cancer. We want our health to return to us. We want back what cancer and treatment has taken away. However, for many of us, this is an unrealistic want. We will never get back to what we were before. Not only because life doesn’t work that way, but also because our memories of the past are imperfect. We tend to remember the parts of our past where we were healthy and pain free. We don’t remember the back aches that we had before cancer. We only remember a pain free body. So not only is our want unachievable it is also unrealistic. In some ways, perhaps, this is what is meant by the “new normal” that we are suppose to be seeking post treatment.

    I’m not sure that Maslow or Bloom really helped me gain a better understanding of where I am right now. I’m still desiring some form of healing. I’m not ready to move onto the self-actualization part that may come with recovery (if that is even possible). I’m stuck a little lower down on the pyramid. I want to find a way to heal first, before I leap too much further into recovering. Perhaps, as Michael Lerner says, it isn’t a linear process – it isn’t a hierarchical pyramid – rather it is a circular or spiral journey, where we weave in-and-out or between the different layers of curing, healing, and recovering. I’ve moved further from the center, which was curing, and am moving further to the outer edge which is recovery, but mostly I’m stuck in the healing stage. Not yet ready to make a full leap into recovery, because that is just too scary right now.

  • A little too enthusiastic

    A little too enthusiastic

    So on the Thursday at Epic Experience I was perhaps a little too enthusiastic. Then on the last day, I figured I could run (more like sprint) in the deep snow with my snow boots on. That didn’t work out so well.

    I was in enough pain that one of the staff brought me back to the chalet in a raft (they used it like a toboggan). At lunch I decided that the pain was bad enough that I needed to go into town to have it checked out at emergency. So, alas, another one of the staff brought me down to the Vail emergency room. I was seen pretty quickly. They took an x-ray of my foot. Confirmed that nothing was broken, and gave me just enough pain killers to get me home.

    I went to see the podiatrist on Monday. After checking the x-ray, hearing my story, and a quick exam, he diagnosed a torn Plantar Fascia. He said that the snapping was probably a release and that was a good thing as it meant that surgery would not be needed. Instead he gave me a walking cast to wear during the day for three weeks. I couldn’t wear the cast that day as it just increased the pain. I’m to ice three times per day.

    Today I was able to wear the cast, which made my mobility slightly better. Then my Evenup Shoe Lift arrived. When added to my other running shoe, it makes my feet much closer to level. I was surprised at how much less pain there is walking with the Evenup Lift. I’m walking almost completely pain free (with cast and lift). Yay.

    Do I regret my enthusiasm? Not one bit. It was totally worth it! I had a great time and pushed myself. My Wonder Women attitude meant that I surprised myself with how much I could do. I needed the opportunity to push myself.

     

    Being unable to exercise or really do much outside of the house these last few days has meant that I’ve gotten a lot of work done. I’ve done a lot of writing. And the classes I’m teaching in February are much closer to ready to launch.

    Hopefully I’ll heal quickly. In theory, the cast will be off in three weeks. Fortunately I don’t need to sleep in it, nor do I need to wear it in the shower. I’m very happy that we still have my shower chair from my surgery – it has made it much easier to shower.

     

  • Next steps in hormone therapy

    Today I started with the aromatise inhibitor (AIs). It is the next step in hormone therapy. I’ve been doing ovarian suppression since October. I delayed the start of AIs in order to ensure that I was only introducing one new drug to my system at a time. I don’t like to change too many things at once, as it makes it difficult to see which drug is having which effect. And so, when I realized that I’d have a two week window of stability on my other meds, I figured this is a great time to start.

    I warned my husband that I might get bitchy. It is one of the potential side effects. I’ve talk to some women who have had no side effects – so I’m crossing my fingers. There is some hope that since my body has had a little time to adjust to the ovarian suppression, that adding the AI will not be too much of a hit. My body so wants to have estrogen, but alas, so does the breast cancer. So today additional wellness pill is Anastrozole. I am writing today mostly so that I have a log of exactly when I started.

    10 years is a long time to be on a medication … so 9 years and 364 days and counting (maybe I’ll add a count down clock to my blog) …

    [wpc_countdown targetdate="2026-01-12"]

     

  • Last week I got to be Wonder Woman

    On the drive up to the 7W Ranch near Dotsero Colorado, we were all asked to come up with a ‘camp name’. I had a hard time as I really wanted to use a name that represented who I wanted to be for the week. So, not just a nickname, but also a name that would help me frame my mindset for the week. I needed to decide who I wanted to be for the week.

    It was as we were having dinner the first night that it occurred to me. I wanted to be a superhero. I wanted to be someone who represented strength, but also I wanted a name that itself would be a source of inner strength that I could draw upon for each of the adventure experiences. With that in mind, I decided that I wanted to be Wonder Woman!

    The funny thing about using camp names is that people don’t get to know your real name. Everyone at camp called me Wonder Woman. I actually found it easier to remember camp names than to remember real names. It didn’t take me long to remember the names of all the campers. We had Wild Flower, Rey Rey, Fancy Pants, Jelly Bean, The Spaniard, Nutz, Kitty Sox, and myself – Wonder Woman. What an awesome group.

    Throughout the week we participated in a series of adventures. The first couple of days were not really a surprise, as I knew that the winter camp involved snowshoeing and cross country skiing. Knowing that helped me pack, but also helped me physically prepare for the camp. Other activities involved a lot of tromping around in the snow and a couple of fun filled field trips. The activities are all lead by the wonderful folks at Renaissance Adventure Guides (Master Chief and Scrat).

    There were beautiful sunrises:

    Ice crystals on the snow:

    Fields of elk:

    Frozen streams:

    Snowshoeing trails that included some bear claw markings in the aspen grove:

    Cross country skiing in Vail:

    Crazy awards:

    And some random frolicking in the snow that involved full sized rafts, driveways, and motorized equipment:

     

    … and so much more, but I’m sworn to secrecy for some of it … so that others that attend can enjoy the surprises!

    Last week, I was Wonder Women. Not sure who I am going to choose to be this week!

    Epic Experience can take up to 12 campers. They accept any cancer survivors/thrivers who are physically able to attend the camp. The ranch is located at 9000 feet elevation, which does pose challenges, but is not insurmountable for a lot people. What is nice is that the camp is not age restricted, such that anyone who wants to can attend. Some people are afraid of the winter camps but I’d encourage anyone who is, to just do it! They have warm hats/mitts/gloves/pants etc for those who do not have their own. They provide a supportive environment to help you get out and explore fun winter activities, a warm cabin, and great company. In addition, they make great wholesome meals and adapt to the most challenging dietary restrictions (like my celiac disease). So if you are at all interested, I encourage you to apply. The week long camp is free for cancer survivors/thrivers. They have spaces available in all of their winter camps. Applications are available here.

  • Today I surprised myself

    I’m up in Colorado at an Epic Experience winter camp. The activity today was cross country skiing (I’m not supposed to tell). One of the reasons I was so happy to be accepted to an Epic winter camp was that I had no idea if I could cross country ski. It was one of my favorite winter sports before cancer, but my surgeries and neuropathy are challenges. So I was truly delighted I was able to ski. Making it even more epic is that I skied a lot further than I ever expected to ski – usually the first ski of the season is short 3-4 km. Today I skied 8 km, and I’m feeling pretty good. I have a few muscles that will be sore tomorrow, but overall it was awesome. It was Epic!

  • This year I will be strong

    I decided on the plane to Denver last night that this year, I will be strong. I chose not to ask for a wheelchair at the airport, and did not pre-board my flight. After being seated, the hostess asked me if I wanted a wheelchair upon arrival, as one had been ordered for me. I told her I was not sure – I would not know until I tried to stand at the end of the flight. Truth be told, even if I am in pain at the end of a flight, the best thing for that pain is walking. I’m better off to walk to baggage claim then to take the wheelchair. Upon arrival, I let the person holding the sign with my name and wheelchair know that I would not be needing it. That I would be walking.

    In some ways this represents a change in mindset. Note that I still have a wheelchair booked for my flight home. We’ll see how I’m doing after a week of adventure. But I’m hopeful.

    In some ways this aligns with the acceptance that my body will likely always be a little pain. A little pain is OK. As long as it is not a lot of pain, I’m good. In part this is a shift in attitude. I no longer want to think of myself as sick. I want to think of myself as healthy.

    Reminds me of those stupid surveys that they make you do at the doctors office – where they ask you to rate your health. I never know how optimistic or pessimistic I should be on those surveys. If I rate my health as excellent the doctor won’t take my pain seriously, if I rate my health as pessimistic, they won’t think that I’m an active person and I’ll get a lecture about the need to exercise and eat healthy foods. As I wrote this last sentence I realized that I’m doing a little fortune telling (it is a fallacy in thinking that is often highlighted in cognitive behavioural therapy). For me, labelling the fallacy helps me move past it. It helps me change my thinking.

    Another area of thinking that I had last year was the sense that “I’m broken”. That my body is broken, and I’m struggling to fix it. Anytime I try something else breaks. But I don’t see it that way anymore – again this was a fallacy in my thinking – there are many ways in which I am healthier and stronger than I was last year. And the diagnosis with celiac disease will help me be healthier.

    All this to say, as I get ready to embark on my Epic Experience adventure, that I have decided that this year I am healthy and strong. I can choose how I feel about myself and my body. I am choosing to feel competent, strong, and well.

  • Reflections and looking ever forward

    It is that time of year again when the blogosphere is full of resolutions. I prefer to look at goals for the new year rather that resolutions. To me a resolution feels more like a punishment for something that I have done wrong, rather than a target for something I want to do right.

    At the end of last year, I celebrated the end of active treatment. On January 2nd, I walked 3.2 km – I’m actually really impressed at to how quickly I got back into walking. December 18-22 I needed help just getting out of bed, never mind making my way to the toilet. I read my previous posts – my optimism about my drains coming outthe support of an amazing loving husband – and my first cup of coffee! Man has 2015 been a much harder year than I ever anticipated. But alas, I had my successes – cycling up Mount Hamilton and walking 32.5 miles in two days.

    So what are my goals for this year? I’m a little hesitant to state them. My first is to get back on skis. I’m going to be trying it out this week at Epic Experience. I so hope it works out. I really would love to ski again. I miss the smell of snow.

    I also want to get back on my bike. As much as I enjoy hiking in the mountains, I also really enjoy going for long bike rides.

    I don’t have any specific stretch goals planned. Perhaps my stretch goal would be to finish my PhD! I’m going back to school officially in January. I’m already teaching part time at two universities – which is about all I can handle while doing my PhD research.

    When I get back from Colorado, I will start new hormone therapy. Crossing my fingers that it doesn’t have any negative side effects. I want to get as much as my health back as I can – but also I need to learn to accept that I won’t get it all back. I won’t be that person I was after riding my bike across Canada in 2008-9. In some ways I’m a stronger person, but in others I am so much weaker.

    And with that note, I must get packing – my flight leaves in a few hours. I’m so excited and yet a little frightened about going to Colorado. I’m travelling on my own (not a huge deal really). I am mostly anxious about food – but I need to learn to let go of that. Perhaps that is my stretch goal for 2016 – to learn to let go of my need to control my every meal.

    Celiac disease has just fed my compulsion to need to control my meals – it gives me an excuse to stress over it. However, I need to learn to let go a little. I need to learn to trust that I won’t starve (I always carry snacks to ensure that doesn’t happen). I need to learn to let it be OK to not know exactly what my next meal will be. Yup, as I write this it sounds more and more like this area of control is something that I need to let go of. So, perhaps that is my stretch goal for 2016 – to let go of some control/anxiety over my next meal.

  • For 2016 I seek balance

    As I write this I’m reflecting with some sadness. There have been several people within the blogosphere that have passed away this holiday season. I just read that the first person who I met with metastatic breast cancer (I met her at a young women’s breast cancer support group meeting) has passed away. It is always sad to hear of these passing, but especially sad when it is someone you have met, even if it was just that one time. Her spark for life touched me at a time when I was still pretty new to the whole breast cancer thing – I think I met her when I was on my second or third round of AC chemo. I do recall that her checkin made me cry uncontrollably that evening. So, there is sadness in my thoughts this evening.

    Over the last few weeks, I’ve been reflecting on 2015 as it comes to an end. I’ve been reflecting on what my goals might be for the year to come. I don’t want to have specific goals – because I’m a bit afraid of not being able to live up to them – rather I want to set goals that are achievable.

    So, for 2016, the biggest thing I want to figure out is balance. How to find an effective balance in my daily time demands. How to balance the amount of work I’m doing, the research I’m doing, with the time I need for self care, exercise, doctors appointments, and grocery shopping.

    Just yesterday I demonstrated how the simple task of grocery shopping can turn from a 30-minute activity to a two or more hour activity – as we couldn’t get what we needed at one store and needed go to two others in order to get everything. So went the afternoon.

    The other goal I have for the new year is to get back on the bike. I pretty much stopped biking when I got lymphedema, largely because I also had a fair bit of shoulder pain. Biking made things worse. Plus, I am spending a lot of time at the gym, 45-minutes of cardio, a little weight training, and a 40-minute swim. Add in the 30-minute drive to and from the gym, and it becomes a four hour task that I undertake three times per week. Since my priorities have been hiking and the gym, biking has fallen to the way side. So in the new year, I will need to get back on the bike.

    The other aspect of balance is around my mental and physical health. I want to maintain a balance of being proactive but avoiding being reactive. I don’t want every pain to signal something that I need to fix. Perhaps it is a balance of allowing myself to live with a little pain as a reminder that my body is not perfect, and that is OK. Either way, I need the little pains to not be triggers for big worries. Perhaps I need to learn to leave the worrying to my doctors (amazing how well it works to just decide to let someone else worry for me). If I trust my doctors, and let them worry about detecting recurrence, I can just get on with living my life.

    And so, with that, I shall look into the new year with hope of finding some kind of balance in my life, whatever that might mean …

  • Balance and counter-balance

    I’ve been reflecting lately about how I’m no longer afraid of cancer recurrence. It is no longer something that I worry about. It isn’t the first thing that comes to my mind with every ache and pain.

    This is one of those good-thing bad-thing things. You see, since I am no longer worried about cancer recurrence, I question the need to be on hormone therapy. I can totally appreciate why there are issues with women complying with hormone therapy.  I question the need to continue with treatments that might make me feel sucky. It is a lot easier to put up with the treatments when you think of them as a safety net. When you consider that they are what will help prevent recurrence.

    So, a little worry kind of needs to be there. That little worry needs to be just enough to motivate me to continue down the path of hormone therapy. Without that little worry, the treatments feel like torture for no benefit.

    And so, I feel the need for a little balance and counter-balance. I need to feel like the hormone therapy is doing something. Fortunately, I will know that one aspect of it will be doing something – that is, the once every 6-month Denosumab shots – because they will be treating my osteopenia (low bone density). Between the gluten-free diet, additional calcium supplements, and the denosumab shots, my bone density should return to normal (crossing fingers).

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