BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Category: Emotional Journey

  • 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 out – the 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).

  • A visit to the pain doctor

    Yesterday, I saw a pain specialist. This was in part due to some ongoing pain in my left breast – right where my tumor used to be. I’ve had the problem pretty much all year. I recall my plastic surgeon days “It’s just a stitch“. I also have back pain and pain associated with chemotherapy induced peripheral neuropathy. I was glad to be able to talk about all my pain issues.

    I had two important take aways from the visit. First was the term “pill fatigue”. The idea here is when you need to take too much pills. I find this with gabapentin. I can manage it twice a day but three times a day is just too much for me to manage. Fortunately, he happen to mention a different gabapentin – one that is time released and only need to take once per day. I say immediately yes! He did warn me that it is not on all formularies – a term I’m learning which means not all insurance companies will pay for it. Given that the three pills three times a day is a valid treatment option – however, it doesn’t account for “pill fatigue”.

    The other important take away – and the one that made me cry because it hit close to home – is the association of pills and illness. Every morning and evening I’m reminded of my various ailments because of all the pills I’m taking. The doctor suggested that I find a way to move beyond that and accept that taking pills is part of wellness. The idea really struck a cord. So, I am going to try to reprogram my brain. I’m going to try to see my morning and evening pills as wellness pills rather than illness pills. I take the pills so that I stay well.

    More important than any pills he can give me to manage the pain – we talked about a new drug but it will need to be coordinated by my psychiatrist and oncologist (I really got a sense of my various doctors working together on my care) – but more important than that is that I left the appointment with a new attitude, and I think that will help more than anything else.

  • A year ago today …

    A year ago today, I woke up very early. No breakfast and no coffee, we headed to the hospital. All the waiting was over. Decisions had been made. I was as ready as I was ever going to be.

    For me, the surgery itself was the easy part. I went in, got prepped, they put me to sleep and that was all there was to it. It was the journey back that perhaps the biggest challenge of my life.

    So, today, I look back with tears in my eyes. I’m flooded with emotions that I just cannot describe. It isn’t happiness. It isn’t sadness. It isn’t relief, or celebration. It is just an overwhelming sense of emotion. I find myself thinking that maybe this is just a nightmare, and one day I’ll wake up and it didn’t really happen. Perhaps this emotion is more a sense of mourning. Mourning the loss of innocence. Mourning the loss of expectations of good health – something that I never realized I had until I heard the words “you have breast cancer”. Even after hearing those words, I still had an expectation of good health. I still had the sense that I’m strong, I can do this. I truly had no idea just how far down breast cancer treatments would take me.

    This is my one year cancer free day. It is the day the last bits of breast cancer were removed from my body. It is amazing how far I’ve come. Looking back, I posted on December 23 about being home and walking around our courtyard. In March, despite having open wounds in my stomach, I rode my bike up Mount Hamilton. In July not only did I do two 10-mile hikes back-to-back, I also walked 32.5 miles in two days), and yet I feel like I still have a long way to go before I’m healthy again. With each day, I get stronger …

  • Memories

    As my one year cancer free day is fast approaching (December 17, 2014 is the date the last of my cancer was removed from my body), I am finding myself having flashbacks to my diagnosis day. I am not remembering the storm the week before surgery, nor how low I was feeling. Instead I’m remembering some of my thoughts upon initial diagnosis.

    I am remembering how I thought to myself If I get treated at Stanford does that mean I get to buy the sweatshirt? Finding it tacky wearing university clothing for schools that I’m not associated with. Fortunately, I’m associated with enough schools that my sweater collection isn’t lacking.The answer to that question was a resounding yes. I wore my Stanford hoodie to almost every doctors appointment and chemo session. Now I’m wondering Now that I’m one year cancer free can I buy myself a new Stanford sweatshirt? Or do I move on and just get sweatshirts/hoodies for the schools I’m teaching at/studying at?

    As I write the question, I reflect on just how trivial it is. Not a big decision.

    The other memory I’m having is that of Window Shopping. I recall that morning (before treatment, while we were still waiting for pathology results), walking through Sausalito, finding myself staring at women’s breasts. Scared. Not knowing what was going to come next.

    In the midst of these flashbacks, Facebook reminds me of the rain storm at this time last year. It rained heavily for three days straight. The rain would mean that the emergency rooms were busier than normal for this time of year. It also meant that the hospital was a complete zoo when it came time for me to check-in for my surgery.

    Those are my memories for this time of year.

    Another lifetime ago, in December 2008 we were visiting Antakya Turkey. We were preparing to get back on our bikes and ride into Syria. That was a lifetime ago!

     

  • The other 70 ish percent

    It occurs to me that there is a lot of dialogue about how approximately 20-30% of early stage breast cancers progress to metastatic disease. I ran into a bit of conflict in a discussion group the other day because I asked the organization to do some more research around the myth of 30%. With that I’m referring to how people use the 30% number as if it were a known fact, when we currently don’t have any accurate statistics to support it as fact. I’ve blogged about the dangers of throwing out scare tactic statistics on those of us living with the aftermath of treatment.

    This 30% is used to rebuff the message that “early detection saves lives”. Unfortunately, for 20-30% of women, early detection makes no difference. For them, the disease will progress to metastatic disease regardless of what they do. However, what about the other 70ish percent? Does early detection make a difference for them?

    The point of this post is to talk a little bit about what it means to hope to be in that 70%. I hope that early detection does make a difference. As I learn to live with the aftermath of very invasive and traumatic breast cancer treatments, I am left reflecting – I am left hoping – the only way that I can personally consolidate the assaults on my body is to accept that had I done nothing, I would have died. So, for me, early detection did save my life (at least that is necessarily my current view). Early detection wasn’t a wasted effort.

    So, maybe early detection doesn’t save all lives, but to say it saves none would again be unfair to those who have survived breast cancer treatment. It would be unfair to those of us who live through the side affects and aftermath of treatment.  We need to believe that acting quickly to treat our not-yet-metastatic breast cancer was the right thing. We need to be believe that early detection helped reduce the severity of our treatments and the spread of our disease.

    I won’t be able to tell you that early detection saved my life until I die; however, I will tell you that I believe that I caught my breast cancer early. I believe that early detection meant that the cancer had not spread to my lymph nodes before I sought treatment. It reduced the impact of my treatments (I didn’t need radiation), although my treatments were pretty extreme (chemo and bilateral mastectomy) – and now hormone therapy (which is a misnomer as it involves the blocking of hormones rather than providing hormones). For me, I have to believe that early detection saved my life, cause otherwise, all the hell of treatment was for nothing, and I simply cannot believe that.

    So, for 20-30% of women, early detection will make no difference. For the rest of us, it will save our lives.

  • Today I wanted to share these posts about food from a dying cancer patient

    Today, I want to share with you two very well written and informative blog posts by Ann at Breast Cancer? But Doctor …. I hate pink!

    In the first post Ann eloquently talks about the challenge of eating while experiencing what she informs us is known as cancer anorexia cachexia. As someone who is going through the end-stages of terminal cancer, Ann generously shares with us her experiences. She describes what it feels like to be that person who no longer has any desire for food. She explains about how it is different from not having an appetite.

    As someone who loves food, I cannot imagine being in that position. I cannot imagine what it would feel like to no longer have any desire to eat. I cannot imagine what that feels like, but Ann does a good job helping me understand what she is experiencing.

    In her second post, she provides useful tips for caregivers. Even more important than understanding her experience, giving loved ones the tools to know how to help is immensely valuable. The job of the caregiver is never easy – so having a sense of real concrete things that one can do to help really matters.

    So, thank-you Ann for sharing your experience. Your blog posts have touched me.

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