BC Becky

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

Category: recovery

  • 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.

     

  • My biography

    My biography

    I spent the day today preparing my biography for an upcoming Commonweal cancer help program. We were tasked with writing our biographies. We could write as much or as little as we wanted. We could talk about any aspect of our lives.

    It was an interesting reflection. I started at the end really. I wrote a long post on my other blog – a biography of sorts – autopathography – where I interwove quotes from Arthur Franks – The Wounded Storyteller.

    I then created an outline of key events in my life. I shared the short story, which is really my long bio. I looked through our Going East blog for posts about our journey but also about our values. I search through my academic blog for some key reflections, and I search through this blog for others.

    Through the process I didn’t really come up with a theme. The bio seems more of a disjointed connection of stories. I enjoyed the process, but also cannot spend any more time on it right now. I have work to do.

    I’m not going to share the bio with anyone except the folks at commonweal, and maybe Scott if he is really nice to me :-). It is 29 pages and 13629 words.

    I will, however, share with you this word cloud that results from the stories. It is rather jumbled which aligns quite well with how I’m currently feeling.

    20160119 Bio

  • 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.

  • Treatment update

    I mentioned in a previous post that in the new year I’ll be starting a new treatment to help reduce the risk of breast cancer recurrence. Since then, hubby has found for me a link to the studies that were presented at the clinical cancer conference in San Antonio. Thanks go to Anne at Chemobrain Fog for posting links to the presentations. I’m going to post two of the video clips below.

    It will be interesting to see what my insurance says about the denosumab. They made me do the injections of Nulasta (at $5000 per shot, I’m amazed that they trusted me to do them myself). Denosumab is similar in that it is a subcutaneous injection. We shall see. Given that I have low bone density (osteopenia), my insurance should cover the injection.

    And so, in the new year I will begin a new breast cancer treatment regime that will also help to address issues with bone loss (which in part could have been caused by undiagnosed celiac disease). What I don’t know is when do I get a follow up bone density scan to see if it is working? Likely not for 6 months or a year – maybe even longer.

    Crossing my fingers that I tolerate the new Aromatise Inhibitor and denosumab well. It means that treatment to reduce recurrence includes Lupron once every 3 months, Denosumab once every 6-months, and a daily Aromatise Inhibitor pill. These are part of my “wellness” treatments!

  • 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 little bummed out …

    I came back from my last oncologist appointment (Monday) feeling a little down. The visit was good. We made a solid plan of action that addresses both breast cancer prevention (hormone therapy) and treatment for osteopenia (low bone density). I was fine until I asked the question “so how long would I need to be on the hormone therapy?” … the answer I got back was “for you, 10 years”. So I’m bummed. I had hoped with the switch aromatase inhibitors that it would drop down to 5 years.

    The good news is that the latest research (of about two weeks ago) is showing that Aromatase Inhibitors (AI) plus denosumab once every six months decreases the risk of hormone positive breast cancer recurrence. Upon hearing this, I tried to look it up. I didn’t find anything. However, I decided early on that I trust my oncologist. He is the expert. He is the one going to the academic and clinical practice conferences. And so, I now have a plan. I’m still taking Lupron once every three months to ensure that my ovaries are not producing estrogen, then in the new year (actually February) I’ll begin taking an aromatase inhibitor which stops my body from converting androgen to estrogen, reducing the amount of estrogen in my body even further. It looks like Breastcancer.org have recently updated their page on aromatase inhibitors as it now references a 2015 study. I’ll add in the denosumab once I’m stable on the AIs and once my foot has finished healing (In January I’m having a minor surgery to clean the arthritis and bone spur on my toe).

    I’ll be adding one thing at a time, so that I can figure out which has side effects for what. I’m encouraged that the AI is said to have less side effects then tamoxifen. I have very few / minor side effects with the Lupron. I’m just hoping I don’t end up with crazy headaches like I did on tamoxifen. That was not fun and truly began to drive me crazy.

    I try to look on the bright side. I try to think that this is my ‘protection’. I feel a twinge of guilt because I have something that provides that protection and yet I really don’t want to have to take it – unlike a friend who has triple negative breast cancer and was recently diagnosed with metastatic breast cancer – at least I have something that might provide some protection. However, I also think it totally sucks to have to be on medication for 10 years. It sucks to be thrust into enforced menopause before my time. It has me kind of bummed out …

css.php