BC Becky

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

Author: Becky

  • Back pain … what now

    Once I found out that my back pain was not caused by cancer, I had to figure out what to do next. The pain was unbearable and constant so there was no way I could continue with doing nothing. I first followed up with the physiatrist and booked another back injection. The injected helped temporarily. It took away the constant pain, but didn’t help with the issues I’m having with standing or walking (which means I cannot hike and I cannot even walk around the block!). I asked for a referral to the neurosurgeon – the next step in this process.

    This involved MRIs and x rays, which showed that I have some spinal compression and a herniated disk. The surgeon did a really good job of explaining what was wrong, and what the surgical option would be (fusing a couple of my vertebrae in my lower back). The recovery alone would take at least 3 months and there is no guarantee that the surgery would help. Also, there is a risk that longer term, the surgery would then cause stress on discs further up my spine, leading to the same problem just higher up. That being said, I need some form of relieve.

    I went to see a disc specialist – technically a chiropractor, but one that specializes in disk injuries. He looked at my MRI and showed me what was wrong with my back, and put together a non-surgical treatment plan that involve spinal decompression therapy. The treatment is a bit intense – three times a week for 8-weeks – but also holistic. They do decompression, but also muscle stimulation, cold laser therapy, chiropractic adjustments, and exercise therapy. The idea is that as the spine gets decompressed (using a special machine), this causes negative pressure between vertebrae, which then allows fluid to go back in and rehydrate the discs – leading to healing of the disc. The exercise therapy helps to build up the necessary muscles to help keep the discs hydrated – which is seen as the core of the problem.

    I decided to give it a try. I read some of the criticism about the research – which I see the bias in right away – that is, they complain that there isn’t a “blinded study” and such. The challenge is, that this isn’t something that you really want a blinded study on. I have seen enough of the way some of the cancer trials are done – many are not blind – they cannot be. I cannot see how this could be blinded, as you feel the traction – so you would feel if you were not getting it. I think the blinded trials in mouse studies makes sense, but I’m not convinced they make sense in studies that involve human bodies – bodies that are so individualized and complex. Epidemiological studies make more sense but they are only useful with interventions that are done on large populations.

    Either way, I decided to give this a try and I have some hope that it will provide not only relief from the pain, but a lasting way in which to address it non-surgically. Crossing my fingers that this works!

  • I forgot … and that is a good thing

    I forgot … and that is a good thing

    On Wednesday, as I was signing a bunch of papers, I wrote the date down at least 6 times. June 12, 2019.

    It wasn’t until support group last night when I was introducing myself that I realized that Wednesday (the day before) was June 12. Five years ago on June 12 the radiologist told me I had breast cancer. Five years ago today I started this blog.

    I was a little surprised when I realized the date went by and I didn’t remember it. I had no emotional breakdown or any feelings about it. Now, I do not consider my diagnosis date as that significant, as I still had cancer in me. I had cancer in me until December 17, 2014. That date is one that I am not likely to ever forget. But forgetting the various milestone dates that led up to December 17 – well, it is ok that those get forgotten.

    So today I’m happy because on Wednesday I forgot … and that is a good thing.

    Feature image by Craig Tidball on Unsplash

  • 30 … uh … 10 things that make me smile

    30 … uh … 10 things that make me smile

    I have been struggling with writer’s block lately. I know I need to get back into a regular writing practice. I’m making progress with my dissertation, but it too needs me to just get comfortable with putting words on the page – getting past that block.

    Today I decided to search for writing prompts. At first I was looking for prompts to help the digital storytelling class that I’m facilitating, but then I decided I wanted to try something for this blog too. I’m not really in an intellectual mood this afternoon, so I needed something more reflective. One of the prompts I came across was to write about “30 things that make you smile”. I decided that 30 was daunting and I wouldn’t even start if I had to start that big … so I figured 10 things, in no particular order that make me smile.

    1. My garden. I feel content with the Mona Lisa kind of smile way whenever I go into my garden. At different times of year, it has different crops. Right now it is piling high with snow peas. I had planted a bunch of what I though would be sugar snap peas before going on vacation. They appear to be snow peas – and they are delicious. I also have lettuce that I can harvest daily – enough to make a side salad to go with dinner each day.
    2. A bike ride. It doesn’t seem to matter how far I’m biking. I often have to fight a lot of inertia to get myself organized and then finally get on the bike – but once I’m on the bike, my whole body smiles. It doesn’t even matter what kind of biking. I have a folding bike that I use for most paved trail riding, a recumbent, and a mountain bike. With any of them, after a few strokes of the pedal a smile creeps across my face.
    3. Views. I love to look out over a valley. I love views from the tops of hills (or mountains). I love hiking up a hill/mountain (small mountain) and seeing the view of the valley below. Unlike biking, I do not immediately smile when I start a hike. It is usually a good 20 minutes before I start seeing things that only slow modes of transport can show you – and then I start smiling.
    4. Walking on a sandy ocean beach. I don’t generally like walking in the sand, unless it is at the seashore with the smell of the ocean and the sound of waves crashing by. I can walk pensively along the ocean beach, and when I look out at the waves watching the sea birds playing in the wind – that makes me smile every time.
    5. Swimming with sea turtles. I love to snorkel and I love snorkelling in Hawaii in particular. It is why, when I wanted to something as a breast memorial that I was drawn to swimming topless with the turtles in Hawaii. There is something magical when you come upon a sea turtle while snorkelling. Moving my arms in a way that echos the graceful strokes of the sea turtles front flippers (do they call them flippers?). It is pure magic.
    6. Laughing with friends. I don’t do nearly enough laughing. There has been a little too much seriousness in my life lately. The lack of laughter in my life makes me that much more aware of it when it happens. I have learned to really appreciate those times when we laugh together.
    7. Cuddling with my husband on a cool night while sleeping in our “adventure van”. I sleep so well in our van. In part it is because when I’m sleeping in the van, it means I’m out in nature somewhere. I’ve done trips alone before, and I still sleep well, but it isn’t the same as cuddling up with my husband on a cool night – feeling his chest rise and fall with his breath. It is pure magic.
    8. Serving a good meal. I love to cook – but especially love it when the meal that I prepare turns out well. I don’t generally follow recipes so my cooking is not typically consistent. I do, however, especially enjoy it when a meal comes together and is especially good.
    9. Eating a good meal. I am a bit of a foodie. We used to enjoy going out to nice restaurants – ordering the 5-course chef surprise. Unfortunately, since my celiac diagnosis this has been a lot harder. I can rarely order the chef surprise as I cannot guarantee it doesn’t have gluten. In most restaurants, I only have a couple of choices, as almost everything on the menu has gluten. However, every now and then we find a place where the food is really good and I feel like I can relax and enjoy it. That makes me smile. I wish there were more places like that.
    10. A lesson well received. In this case I mean  that when a lesson that I designed in one of my online courses is well received by students. More specifically, when my students surprise me with what they do. I try to keep the instructions open enough so as not to stifle that creativity and inspiration in my students. I smile when an activity causes my students to produce something that is well beyond my expectations.

    And that was 10 thinks that make me smile. There are more. Writing this post made me smile – at least 10 times. As I reflected on each of these things, I felt the echo of a smile.

     What are 10 things that make you smile?

  • June is hitting me hard

    June is hitting me hard

    June is a particularly pensive month for me. This year June is hitting me harder than it has hit me in previous years. June 12, 2014 was when I first heard the words ‘you have breast cancer‘. Last year, in June I had heard that mom’s cancer had progressed very quickly. It is hard to believe that was a whole year ago. It feels like both yesterday and forever ago.

    One reason I think I’m struggling right now is that I normally would share this particular struggle with my mom. I often would talk to her about how one of the hardest things I ever did was have to tell her I had breast cancer. This year she isn’t with me to share this memory. It wasn’t a pleasant memory, rather it was a memory of shared pain. We each felt the gut-punch at the saying of those words. I could not say it without breaking down into tears.

    I didn’t struggle so much with my mom’s birthday because we were on vacation. I didn’t struggle so much with Mother’s Day this year because we were again on vacation. Now it is Father’s day. I see the advertisements constantly. Everywhere I go there are ideas and things you can do with dad. It is hard, because again I cannot share that loss with mom.

    And so it is Father’s Day and the month of June in general that makes me feel down. I am struggling. I’d say I was putting one foot in front of the other, but I’m not really doing a whole lot of walking – my back is still not cooperating with me on that front. When my back hurts, it also reminds me of mom. She had back issues for a long time. Some of the symptoms I’m having now are echos of the early symptoms she had. I find myself having to remind myself “I am not my mother”, in much the same way I had to remind myself that “I am not my father” after finding out that I have celiac disease.

    And so I am trying to figure out some new coping mechanisms – and I’m going to try to get back into regular writing – and regular creating. I’m enjoying the classes that I’m teaching. I’m making progress on my dissertation again. These are things that would benefit from me getting back into regular writing – and regular blogging. I’m going to try because often just putting it down in writing helps. It helps me to acknowledge what is going on in my mind.

    I’m not just remembering my diagnosis five year ago, I’m also grieving the loss of my parents. Love you mom and dad.

    Feature image by Mike Labrum on Unsplash

  • Then the phone rang …

    Then the phone rang …

    The phone rang and woke me up. It was the call I had been waiting for, but also dreading. When I talked to my oncologist the week before vacation, he told me that I’d get the results the day after the PET/CT. If the results were clear, then the would be released for my viewing in the patient portal. It there was a concern, I’d get a phone call.

    Then the phone rang.

    It was my oncologists nurse. She asked me if I wanted the results of the PET/CT. Of course I did. I had delayed the test until after vacation, so the concerning symptoms had been reminding me constantly that the cancer might be back. For weeks I had tried to put it out of my mind – to forget about it. My oncologist said he was only a little bit worried – that if he was really worried he would have pushed me to do the PET/CT before vacation. This was a test because I had some symptoms, but he wasn’t too concerned. I tried to reminded myself of that everything my back ached which was pretty much constantly for the last month. I tried to remind myself every time I felt queasy – a feeling I had associated with liver enzyme issues. I had too many signs that the cancer had spread. I tried to not think about what it would mean if the cancer was back – how that might change my priorities and how my life might change – and yet, I didn’t have a diagnosis, so I also tried to put it out of my mind and forget about it – enjoy vacation. Escape from all the pressures of work and school.

    Then the phone rang.

    She told me that the PET/CT was clear. There were no signs of cancer. There was some inflammation consistent with flap reconstruction, and some degeneration in my back (consistent with arthritis). But no cancer. The cancer was not back.

    I took a deep breath.

    I didn’t cry. I had expected that I’d feel this great sense of relief – a sense that had happened with every other scare I had. This time, I was so convinced about it. I’m still processing the letting go – processing the idea that no, I don’t have cancer.

    Now I am working on decompressing from that added stress. I’m also having to figure out what might be causing the symptoms that got me to this state in the first place. My back pain did not suddenly get better with the phone call. It is still debilitating. However, now that I know it is not cancer, I can look to treatment options. I’m going to do another injection in my back that might help relieve some of the pain. I’m going to consult with a couple of neuro surgeons. I cannot live with this pain. It has prevented me from hiking. It limits the cooking / baking I can do. It limits the amount of walking I can do. And so, I’m now looking at ways I treat the pain, and hopefully have it resolved.

    I’ve had varying opinions on the heightened liver enzyme – from it is nothing, to chat with the gastroentronologist about it – as the queasiness might not actually be related, but might be a sign of something else.

    Either way, it is not cancer. I did not receive a death sentence with the phone call.

    The nurse said that she only calls for good news. If the news wasn’t so good, then it would have been the oncologist that made the call. I’m glad that I did not hear his voice when the phone rang.

    So now I take a deep breath. I try to decompress, but then I also need to get caught up on all the work that I have missed over the last month while I was working hard trying to convince myself that I’d be OK, but also struggling not to make plans for the rest of my shortened lifespan. It causes you to take stock in what you want to do with your time – and yet, I know from my initial diagnosis that what I think I might want is likely not the same before diagnosis as afterwards. After diagnosis, your whole perspective changes. I remind myself that “in the absence of a diagnosis I am healthy”, but also that in the absence of a diagnosis there is no point in “planning” because my perspective won’t be the same.

    I remind myself, the scans are clear. It is not cancer. Hopefully soon I will believe it.

  • A day at Tassajara

    A day at Tassajara

    For our last full day of vacation, we decided we wanted to spoil ourselves. I really wanted to spend a day at a spa or something. We were driving up the California coast past Big Sur, so I looked up “hot springs”. The first one I looked up involved a 10-mile hike and was closed due to flood damage from a couple of years ago. The 10-mile hike was a no-go anyways. Then I saw Tassajara – a Zen Monastery that allows summer day visitors and has a Japanese style hot springs baths. Sounded pretty ideal. I called and made a reservation for the following day (Friday). When I called I was warned of a 14-mile dirt road with steep downhill and 4-wheel drive recommendation. That hasn’t stopped us from trying before so it wasn’t about to stop us trying this time.

    Then we set our GPS to navigate us there only to discover that in order to get there we had to drive all the way to Caramel and then loop back, because it was accessed by the upper portion of Big Sur State Park. Scott used our trusty Ultimate Campgrounds app and discovered a couple of forestry campgrounds along the road to Tassajara, so we planned on camping on one of them the night before – that would put us closer and allow us to spend more time at Tassajara before needing to leave so as not to have to drive that road in the dark. We spend a nice night at White Oaks campground in a not exactly flat space (we were on quite an angle). What struck us most was the sound of the birds when we woke up in the morning. It was blissful.

    I wrote more about that aspect of our experience, and shared pictures, at our Travel blog – goingeast.ca.

    When we arrived, we saw the immediate beauty of the place. Our first order of business (after checking in) was to go on a short hike. Since we decided to be without electronics, we cannot tell you how long our hike was, but we took about 45-minutes exploring. We climbed one of the hills to check out the “helicopter pad” (which was just a cleared patch on the ridge of a mountain). I was a little worried about hiking. My back has been problematic since mid-January. I have been very limited in the amount of hiking I can do, which is sad, because I loved going on 2-3 hour hikes. Fortunately, the 45-minute hike agreed with my body and I was doing fine afterwards.

    After our hike we enjoyed a hearty lunch – soup, salad, bread, and dessert. I skipped the bread part, but was happy that I could still partake in the soup, salad, and dessert. I was glad to see that they are aware of various food allergies and provided alternatives to ensure that everyone was well fed.

    We then decided to check out the swimming pool before heading to the baths. I found the pool to be a nice length for swimming laps and wished I had my swim snorkel and earplugs to keep the water out of her ears. I could easily see myself getting up in the morning and going for a nice 45-minute swim.

    After a short swim it was time for the baths. The baths are segregated. They are listed as clothing optional, but really it was more like you were odd if you were wearing anything. They had two hot tubs at different temperatures, and a steam room. Plus, if you wanted to cool down, you could take a walk down to the creek and cool off in its cold flowing water. It was truly delightful until the biting insects came out (some kind of fly).

    This is where I had a decision to make – and a big one. Do I just walk around naked like everyone else – showing my scars? I decided I didn’t care what others thought of me. I decided to not care, and went about soaking in tubs, roasting in a steam sauna, and dousing myself in a freezing cold stream all in the buff – not caring about exposing my scars … and feeling blessed that my plastic surgeon did such a good job that I felt comfortable enough with my body to be in the buff – especially when many other women I know would not feel comfortable in this situation. I did find that most of the other women there looked more like models than a middle-aged overweight cancer survivors, but who is comparing anyways. I am reminded of a yoga practice of letting go of the ego – not comparing to others as we each have our own paths … and so I enjoyed my time until I got bit by some type of fly … then it was time for me to put on some clothes and get out of there!

    We had enough time to also enjoy the 1 hour orientation to zazen in the Zendo. It was interesting to learn about the rituals that were used in their particular form of Zen meditation practice. It is done in community and yet it is such an individual thing. You spend most of the time sitting facing a wall, so that you are not distracted by anyone else in the room. I enjoyed the experience but at that point my back was killing me. The heat of the baths didn’t seem to do it well – especially when followed by a lot of standing and sitting in uncomfortable positions. I didn’t feel like I understood well enough how one my deal with adaptations if one was physically unable to handle the practice as is. The person giving the orientation talked about how some aspect of the practice is painful, and learning to be with the pain – but that was more about acute pain in the moment, and not about putting oneself in a position of being in pain all day as a result of morning practice. I think I would need to talk more to a teacher (I think that is the term that is used) who had a deeper understanding of ways it could be done with a body that is not healthy or fit. In that way, I feel that yoga practice does a better job of allowing people to come as they are – but that is most likely because I just don’t understand it well enough.

    We found ourselves considering a longer visit in the future. Over the summer, if they have rooms available you can rent them. We are thinking of looking into a two or three night stay sometime mid-week. There is no internet, so it would need to be time when we could both be away from work. We both felt like we could spend days exploring the different hiking trails, eating the wonderful food, meditating, and just being one with the space. The thought is so peaceful.

    It was a great way to end a vacation that was filled with such a variety of experiences – almost crazily so!

  • Things I need to write

    I wrote this before I got the results of my PET/CT scan, which was all clear. I’m publishing this now (June 2023) because I think sharing the thoughts is important.

    I find that I need to write, and yet I’m not in a position to share this publicly – at least not yet.

    Something is happening with my health. My body is struggling. My back is killing me a lot of the time. My liver is misbehaving – I can tell because it makes me queasy and I don’t have much of an appetite. I’m scared.

    When we get back from vacation, I’ll have a PET/CT. I’ll know within a day or two the results. If there is anything suspicious, we’ll do a biopsy. If not, then we move onto another plan – but I feel it. I feel like the cancer has come back. I want to get to a point where I am feeling better – where I’m feeling stronger.

    I’m also losing weight. This is a good thing. My doctors tell me that losing weight will help with the back pain – but really, will it? So there is the struggle – what does losing weight actually mean?

    What will I do if I am dying? I know from my first diagnosis, that I cannot plan for it. Anything that I think I might think isn’t what I will really think. I won’t know what I really think until I have that information.

    I’m teaching Tuesday and Wednesday nights, so I’m a little worried that the information will come in just before one my sync sessions – and then I’ll be a total wreck – and yet, I will need to create course material for week 2. I’ll need to work.

    Will I tell Judith? Probably. I cannot honestly not tell her – and yet I don’t want her to panic. I want a prognosis. If I’m looking at 10 years, then I’m ok with that. I’ll do what I can to feel healthy. We will take a 3-month sabbatical.

  • Patient health literacy

    For my dissertation I’ve been working on the concept of patient health literacy, and what that has meant for me.

    Recently I’ve developed a passion for digital storytelling – and the idea of creating short 2-5 minute YouTube videos. When I was first introduced to this idea at Digital Pedagogy Lab, I had thought that it would be a great way to disseminate my various learnings from my dissertation.

    In March I attended a workshop on digital storytelling, where I started the first story on Patient Health Literacy. I didn’t have time to finish it then, but in preparation for a course I’m teaching this summer, I knew that I had to finish it. I needed something as an example for my students – but also for my ePortfolio.

    I don’t know why I found it so hard to hit publish on the YouTube channel. I usually have no trouble sharing things. It is not like anything that is in the video is new. I shared it all in this blog. However, the change in medium – from text to audio with images – changes the level of intimacy in the story. I feel more vulnerable sharing it.

    There is also the fact that I’m teaching now. When I wrote this blog originally, I was not teaching. There was no connection between my professional blog and my illness blog. There I was Rebecca. Here I was Becky. Even Google didn’t put the two together. Then I started researching my illness experience – and my professional world and my illness world collided.

    I’ve struggled with sharing my illness stuff with my students. I usually don’t. Sometimes they find it. It doesn’t take much more than a google search and looking through my blog. However, in the past I have not highlighted it. This semester, I’m teaching a course on creating ePortfolios and with it, I’m updating my ePortfolio (http://rjhogue.name). With that, I will need to create a segment of who I am that is someone who is an ePatient and someone who is studying Patient Health Literacy.

    All this to say, I hesitated to release the video. It isn’t perfect, but I’m proud of what I put together. And with that, I’ll share  the link here. What do you think? Is this a good method for communicating the different aspects of Patient Health Literacy?

  • Is moving back to Canada and the improved quality of life worth living a shorter life?

    This post crossed my stream today – ‘The face of health-care crisis’: Cancer patient calls out N.S. premier in viral video

    This is what scares me most about moving back to Canada … the lack of access to Family Doctors is a huge issue – especially when the system is setup with the Family Doctor as the gatekeeper to access specialists … without a Family Doctor, healthcare becomes inaccessible.

    Not that healthcare in the US is any better for most people – I’m just privileged at the moment. I am acutely aware that moving from a privileged position to one in which I am dependant on a broken system is scary.

    I ask myself – is moving back to Canada and the improved quality of life worth living a shorter life? Does going back to Canada mean that I will die sooner because I will not have access to the healthcare I need? And yet, living here is no better. I am dependant on my husband’s job for healthcare.

    I have huge privilege today, and yet I still feel vulnerable. I know that I can move back to Canada and access healthcare if I lose my healthcare here. I don’t have access to any of the social programs here – we having lived and worked in the US long enough to qualify for Medicaid or any other US social programs.

    Moving – especially when changing countries – is not an easy process. There is a lot to learn about how to navigate the system. When I left Canada, I didn’t have cancer or celiac disease. I didn’t need the healthcare that I need now. I have no clue how to navigate the system there. Plus we are looking at moving to a province that we have only visited, but never lived in. But I also have this vision of life in Nova Scotia – one where I am closer to communities that I am culturally more attuned to. And I am left asking myself, is that worth the exchange of living a shorter life? Perhaps that isn’t a fair question. Perhaps it is a false choice. But it is what runs through my mind anytime I see a report like this one.

  • Back on the bike

    Back on the bike

    On the weekend, I got back on the bike – specially, hubby and I went out for a ride on our mountain bikes. This is the first time I’ve ridden it since I broke my rib riding over Christmas. It wasn’t just about being physically able to ride, it was also being emotionally in a position to give it a try.

    I’m happy to report that we had fun – although both of us could be in better shape. We were both struggling on hills, especially towards the end of the ride. I’m happy to report that I successfully negotiated going down a hill that I thought might be too steep – it certainly was too steep for me to ride up! I thought that I was going to walk down the hill, but in the end, I rode the bike down the hill and didn’t fall, despite being out of breath from climbing that same hill.

    We likely would have done better had we stuck to the original plan – which was a loop that I’ve hike several times. Our initial riding on flat made us over-confident, so we headed up the steep hill. We turned around before too long and decided to continue along with our original planned track – which had a lot more climbing on it than I remember – I guess those gentle-ish slopes don’t feel much like a climb while hiking, but certainly do when you are pedaling – especially when pedaling after having climbed the other hill.

    I’m happy with my new bike – and glad that I was able to ride and wasn’t too negatively traumatized from the broken rib. Now to do some more regular exercise so that I’m in better shape for the next time we go exploring on our bikes.


    Scott climbing the hill.


    Scott riding down the hill. This was before the steep section. I didn’t get any photos of the steep part.


    Me riding across the stream – this is at the bottom of the steep hill.

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