BC Becky

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

Author: Becky

  • Does it feel real yet?

    Does it feel real yet?

    Things haven’t really felt real since this pandemic hit us back in March. At the time we decided to shelter in place. It was the plan that made the most sense.

    Fast forward three months and we are now planning our move. Our house is full of boxes. We have two small shipping containers in our driveway, slowing filling up as stuff leaves the house. We are planning to have it ready for showings by Monday – something our real estate agend didn’t think we could do. Maybe we can’t, we will see.

    There is now a sign on our front yard. Our place is officially for sale. It won’t be in MLS until they take the pictures, which implies the place is ready for staging.

    We have a plan to depart on or about August 1st. Once the car and shipping containers leave, we will be ready to drive away in our van.

    Logistics are challenging in this ever changing world. When we get to Maine we will need to quarantine until we get our Covid test results. We can test there or maybe in New York – either way, once we have a negative test result (or 14 days passes) we can collect our stuff and cross over into Canada, where we will quarantine again for 14-days.

    It doesn’t feel real yet. I’m working my way through the freezer here – trying not to buy any food stuff that we don’t need.

    It is interesting to learn about what food stuffs we can take across the border. With Covid, we have a lot more dried goods at home then we used to. Fortunately, most of this can easily be taken with us. There we two specific things that we need to check for – potatoes and dairy products. It seems that those are the two things with restrictions. Everything else the volume restrictions are way more than we would carry anyways, so we don’t need to worry about them.

    This weekend our focus is on packing up a bunch of stuff in order to get the house ready for the videos for the MLS listing and also so that it can be open for showing.

    Even with a house full of boxes it doesn’t feel real. I wonder if it will feel real when we are living in our van driving across the continent!

  • One step at a time … not really

    One step at a time … not really

    There is an expression about taking things one step at a time. This is great advice when you have a daunting task or project. The thing is, when you have a tight timeline and a lot to do, it isn’t so much about one step at a time as it is about optimizing which steps work well together in parallel and which need to run one after another. It is all about optimization.

    I feel like right now I’m taking about eighteen different steps all in different directions. I’m struggling to stay on top of things and balls are dropping. I’m learning to prioritize. Interestingly writing this is part of the prioritization because I don’t want to lose all the thoughts that are happening as I go through this crazy time.

    My mother-in-law asked the other day about our stress levels associated with the move. We looked at each other and reflected on why we were not stressed, and why we were able to handle the various uncertainties involved in this plan – and that was, that staying is just as uncertain as going. The difference is that staying will mean the uncertainty around here lasts longer – where going the uncertainty is largely in the this time of transition, but will become better managed once we get to the other side of this move. Once we are happily living someplace in the Halifax area, we will be more content – and that is what this move is all about.

    Today we had two boxes delivered from UHaul. This are boxes that we will pack up and which will allow us to remove a lot of stuff from the house here. Yesterday we signed with a real estate agent who will sell our home. It will likely show up in MLS on Friday and they will come on Monday to take photos, so it needs to be stage-ready at that point — which is ambitious, but things change daily around here.

    Right now Santa Clara county is in a good place. With a lot of California taking a pause (or step back) to help contain the spread of Covid, Santa Clara county is actually opening things up. The county is not on the watch list, which means the spread here is pretty contained; however, there are counties nearby where that is not the case, so I don’t know how long things will be OK here – that is the uncertainty part. Our goal is to have the house sold before things take a turn – because we feel that at some point they will – which is in part why we are making the move.

    And so, today we got some shipping containers to start packing up various boxes. These will be shipped to Maine, where we will have them unpacked into a UHaul truck that we drive across the border. There are so many moving parts, my list of to do items is a mile and a half long!

    So, it is not one step at a time but more like 18 well choreographed steps, with the occasional stumble along the way.

  • So, two weeks ago we made a big decision…

    So, two weeks ago we made a big decision…

    Two weeks ago, as we drove up to Mount Umunhum for a hike we were chatting as usual. We were reflecting on the uptick in Covid cases in the US and how things are getting worse not better. We also reflected on how we are here but we are unable to spend time with friends.

    And then Atlantic Canada bubbled. Restrictions got lifted as there were zero new cases for 3 weeks. They have contact tracing and mandatory quarantining in place. If you don’t live there or have family there you cannot visit. They are keeping Covid out while also living almost normal lives.

    I’m not sure if I’ve blogged about our adventures with Treehouse Village. We discovered cohousing – which I had a misunderstanding about but now realize that I will have my own self-contained condo while also having the benefit of living with neighbours that want to be friends and enjoy each others company. Getting back to our Adventure’s, we decided that when we moved back to Canada we wanted to live in Treehouse Village. It will be another year before things are built, but we are really enjoying being part of the process of building the community and creating the communities social norms and policies. It is exciting, in part, because the people involved are amazing. We have not met many of them face-to-face but they all feel like close friends already. It feels nice knowing that we will be moving into a community – there is a lot of emotional labour that goes into building community, so it is nice when that effort is shared.

    Anyways, the big decide that we made was that we are doing to head back to Canada in August. We have only a few more weeks to pack up everything here and manage all of the logistics. It is a bit daunting as I’m still teaching 3 courses, and doing a lot of work for Treehouse. We need to pack up the house, find a real estate agent to sell our place here, rent or buy something in Nova Scotia, figure out how to get our electric car to Maine, drive ourselves (in our van) to Maine, pick up all our stuff and put it in a Uhaul truck and drive across the border in New Brunswick, where we will need to quarantine for 14 days. Oh ya, and then just days after we arrive in Nova Scotia I’m due for my next lupron shot, so I need to coordinate seeing an oncologist and getting that prescription so I can get the medication (it is an injection into muscle so needs to be given by a nurse). The logistics are crazy.

    As I learn more, I’m going to start sharing more. I’ll try and keep this blog up to date on how things are going. I am busy but I also don’t want to lose a record of this time. We are making a lot of decisions and I think others can learn from them. Moving not only back to Canada but also moving to the other side of the continent during a global pandemic when then country you are living in is a hot mess is a pretty crazy thing to be doing. It is hard to believe, but I’m actually looking forward to 14-days of quarantine where we are forced to not go anywhere and we don’t be able to do much other than work (I will still be teaching, Scott will likely still be working remotely), and relaxing. We will need it by then.

    Oh ya, and we made it to the top that day! 4.2 miles along beautiful trails. The square box building is the top.

    Feature image: Mount Umunhum taken from about 1 mile up the trail.

  • May you live in interesting times

    May you live in interesting times

    Funny what happens when you Google a phrase. What I had thought was an ancient Chinese curse, turns out to be a 20th century expression with no connection whatsoever to China. Anyways, the Covid virus has me thinking that we definitely live in interesting times, from a curse perspective.

    So far, my husband and I are healthy. That is good news. I’m getting caught up on some of my outstanding medical issues – some dental work and I finish off my orthodontic work as well.

    Just before my last oncologist appointment, I did a bone density scan. It has been two years since I stopped Prolia and I wanted to make sure everything was OK. Unfortunate, it wasn’t. My bone density is back down to where it was when I started Prolia 4 years ago. It turn out that if you want Prolia to help build your bones you need to keep taking it, every 6 months for life. That is a lot to ask a young survivor!

    My oncologist recommended that I start Zometa – which is a different bisphosphonate and works differently. The biggest concerning side effect is that they can cause necrosis of the jaw, so they recommend getting any major dental work done before taking the medication. In this case, major means anything that affects the jaw bone. Fortunately, I’ve finished the orthodontist stuff and I didn’t need any teeth pulled, so I’m good to start Zometa soon.

    I am super nervous about this. Unlike Prolia which is an injection into the muscle, zometa is given directly to the vein – that is, it is an infusion that take about 15 minutes. It can cause hypocalcemia (low blood calcium) so they check your levels before the injection.

    Of course this led to another level of concern. I have had lymph nodes out on both sides. I generally do not do injections into either arm. I can do a simple blood draw on my right arm, but infusion is a concern. I asked my oncologist and they are saying it is OK to do the infusion in the arm. The other option is the foot which is painful but also finding a vein can be super challenging (my last surgery they had to be a line in my neck which really sucked). So, I’m going to go with the arm.

    Then it occurred to me, if I get the blood draw, then come back an hour later for the infusion, the infusion nurse will be unlikely to find a vein, as the “best” vein will have been used by the phlebotomist for the blood draw. I’m glad this occurred to me in advance, as they changed the type of appointment and now a nurse will put in a line to draw blood which can be used again an hour later (or whenever the levels come back) for the zometa. It means more time there, but one less needle stick.

    I’m not at all looking forward to it. The side effects can suck. The first is flu like symptoms for up to 3 days. This is not the time to have flu like symptoms. It is going to suck – but at least I’m spending most of my time at home anyways. The second sucky side effect is bone pain. This I do not look forward to. I had horrible bone pain with Neulasta during chemo. It is not fun. During chemo, Claritin helped with Neulasta bone pain, so I’m going to try it out for this. Unfortunately the other thing that really helped me was floating in the pool with my clothes on. That won’t be an option anytime soon as pools around here aren’t open (or are only open for serious lap swimming).

    OK this post is getting long. I’ll write another in a few days outlining the other ways I’m living in interesting times. Stay tuned!

    Feature image by Eric Prouzet on Unsplash.

  • A reflective bike ride

    A reflective bike ride

    Yesterday I got back on my recumbent bike and went for a bike ride. Once huge advantage to covid stay-at-home orders is that there is significantly less traffic on the roads. It meant that it was much easier for me to ride over to the path I used to walk and ride throughout chemo and the year following treatment.

    I found it was a trip down memory lane. The grasses on the sides of the path were overgrown – to the point that they need to be cut to prevent them being a fire hazard – with the warm weather over the last couple of weeks, things are rather dry here.

    As my six year anniversary of my diagnosis approaches, the memories start flooding back. This is about the time that I first felt the mass in my left breast. I had not yet realized that it was a lump – rather I associated it with a sore muscle.

    After my bike ride yesterday, the soreness in my left breast returned. When it was cancer, it didn’t hurt, it just felt hard. What I’m feeling now is more an ache – perhaps the ache of loss or the ache of memory. It is likely my mind playing tricks on me – reminding me of all the body pains of the past.

    It was a lovely bike ride. I made it down to the mammoth for a visit. I also saw a few white egrets in the creek – descendents of the nesting pair that I watched as I walked that path during treatment.

    A pair of white egrets in the creek. The grasses by the pathway are very dry!

    Every year I find myself wondering, when does this get easier?

  • Life during “safer at home”

    Life during “safer at home”

    I haven’t blog in a while – in part this is because I wasn’t sure what to say and in part it is because I’ve blogged at Goingeast.

    I am starting to confuse days – except that I know that I cannot hike on the weekends. My days are crazy busy but I’m doing slightly different stuff. In the last couple of weeks I’ve become significantly more productive, almost to the point of pre-cancer – at least that is what it feels like.

    Yesterday (or maybe the day before, I’m totally losing track of days), I filled in the paperwork to officially withdraw from my PhD. I had made the decision before Covid changed my world, but telling people other than my supervisors coincided with it. When I initially made the decision, I gave myself til the end of the month to formally make the decision. With the end of the month approaching I did it.

    I need to remember my own advice about decision making. You made the best decision you could with the information you had at the time. There is no value in looking back and doubting yourself. Once I hit send, the decision was formally made. Now I can move on with my life.

    And so my Covid days have gotten crazy busy. I’m doing a lot of work for Treehouse Village now. Now that I am no longer feeling guilty about not working on my PhD, I’ve been able to sign up to some things that I enjoy doing – and with Covid moving everything online, it aligns nicely with my skills. I’m what I can to support community building and marketing at this time (we are looking for future neighbours).

    And I’m teaching. Three classes right now and three in the summer. We added a second section to the course “the design and instruction of online courses” because the demand was high. As a result, we have have two full sections now and enough students needing to take the course that it will run again in the fall. I’m going to busy.

    I also try to get out for a hike once a week, but it seems to be happening closer to every other week. I go on a weekday, and I use only the trails recommended by the local Open Space preserves and County Parks. Fortunately, so far they have been doing a great job of indicating which trails are Covid friendly.

    With my husband home 7-days a week, my weekdays and weekend blur. We have separate offices so he pops out at various times during the day to grab something from the kitchen. He knows not to bug me when I’m typing, so we are fully able to work together. We spent every day together for 16-months on our bike trip – so we fall right into the flow. At this time of social distancing, I am exceedingly lucky to be living with my soul mate and a partner that I enjoy being with 24/7 (OK almost 24/7). If I want to be alone, I go on a walk. If I want to say hi to another person not on Zoom, I pitter in the garden until I see my neighbour who is also spending a lot of time pittering in the garden.

    So far we are healthy and our plan is to do everything we can to stay that way.

    What does your day look like now?

    Feature image by me – Calero County Park on one of my hikes.

  • Are individual breast cancer narratives just pink ribbons?

    Are individual breast cancer narratives just pink ribbons?

    Personal breast cancer stories are one means of producing and maintaining ignorance about breast cancer.

    (Segal, 2008, p.4)

    I read an interesting article by Judy Z. Segal (2008) that argues that “ignorance about cancer is maintained, in part by the rehearsal of stories that have standard plots and features, and that suppress or displace other stories.” (p.3)

    I find this an interesting argument. In the article she argues that the standard plotlines of stories silence the counter narratives. Anyone that has experience breast cancer, might tell you of the challenge of people telling you that you need to stay positive, eat a healthy diet, get exercise, or pray. As if not doing these things is what led to the cancer, or that not doing these things will cause the cancer to come back. That is the predominant narrative and one that some cancer patients need to fight in order to stay sane.

    Much of what we are told about breast cancer is meant not simply to inform us, but also to evaluate and to govern us

    Segal, 2008, p. 6)

    I found that this quote spoke to me. It can be seen in some discussion forums – where only certain narratives are welcome. In some places, if you do not find god in your experience of breast cancer, then you are doing it wrong. In others it is about diet and exercise, or staying positive. These are all messages that often get propagated in certain online spaces but also through books about individual cancer experience. When you read pathographies (books about illness experience), they are all about the lessons of cancer. The plotlines are all about personal growth in one way or another. Does that not tell cancer patients and the wider world that cancer is a personal growth experience? That there is a right way to do cancer?

    Personal narrative is itself a pink genre; it is so welcome in part because it is unthreatening – unlike, for example, the genre of the protest rally or the diatribe. Furthermore, it is an egocentric genre: it honours the individual and neglects the collective. (p. 17)

    (Segal 2008, p.17)

    I cannot help but wonder if the blog is a genre that breaks this argument. In book length memoires, you need a beginning, middle, and end. The story needs to have a plot that comes to some kind of completion, otherwise the reader is left hanging – and yet, I wonder if that feeling of being left hanging is actually more authentic. But do blogs help? Do they allow more for the protest rally or diatribe that Segal is arguing that personal narratives don’t provide? Does the genre of personal narrative through blog change the analysis of personal narrative as pink?

    Illness narratives not only document and catalogue experience, they also reflect and reinscribe a hierarchy of values for such experience: humour is good; despair is bad; surviving is noble; dying, by implication, is not. (p. 13)

    Did my blog propagate this narrative? Was my story yet another story that served to reinscribe the values that there is a right way to do cancer?

    As readers of my blog, what do you think? Did my blog tell the standard plot/narrative, just in more detail than other tell it? Does the detail help break the standard narratives? Did you leave reading my blog thinking that there was a “right” way to do cancer?

    Reference: Segal, J. Z. (2008). Breast Cancer Narratives as Public Rhetoric: Genre Itself and the Maintenance of Ignorance. Linguistics and the Human Sciences, 3(1). doi:10.1558/lhs.v3i1.3

    Feature image by Gwen Weustink on Unsplash

  • When a TV star has stage IV

    When a TV star has stage IV

    I don’t know why – well I guess I kind of do – but Shannon Doherty‘s recent announcement that her Breast Cancer has metastasized and she is now stage IV (for breast cancer that means terminal) has hit me emotionally.

    I didn’t know her personally, but I was an avid fan of 90210 when I was younger. I think in part it is because she is my age. She was diagnosed with breast cancer as a young survivor (that is under 45) rather than the more typical celebrity with breast cancer that was a more typical post-menopausal age at diagnosis. Young breast cancer are more likely to be aggressive and metastasize, but I know that reality.

    The think is, over the last couple of years I have lost some good friends to stage IV breast cancer. I know that it kills and that it kills young women in the prime of their lives. Mothers of young children.

    And so, when I see it in the news, it hits home. It reminds me of the friends I have lost.

    There is also this idea of parasocial relationships – that is something that is rather academic, but it is the idea that we feel like we ‘know’ someone because we watch them (on TV, read their blog, etc). We feel we know them, although they may not know us at all. I am in no way a ‘star’ watcher. I would not have seen or been aware of Shannon’s career had this not happened. I do remember when the announcement came out about her early stage diagnosis – I was acutely aware of breast cancer at that point because I was recovering from my treatments and I was dealing with the crazy anxiety that came with my diagnosis.

    And so, I know why but also felt the need to write something about it. I know that whenever I hear of anyone being diagnosed stage 4, but especially those who are young – that it will hit me emotionally.

    Feature image by Andy Wang on Unsplash.

  • Getting flustered

    Getting flustered

    Since my oncologist wants me on endocrine therapy for 10 years, I started taking low dose (5mg) tamoxifen. I have been on it for just over a month. At first I was getting slight headaches, but I was taking it at night so it wasn’t really affecting me.

    What have noticed is that I seem to get easily flustered when I have too make too many decisions in a short period of time. I went to the movie the other day with some friends, and the act of buying the tickets through me for a loop. Since they didn’t have 5 seats in a row, we had to sit in a group of 2 and a group of 3. But I couldn’t make that decision. I couldn’t figure it out. I couldn’t read the screen that told me which seats were available. It was just too much to process.

    I notice that I have an underlying level of anxiety that I don’t recall having before.

    It was on my walk around the block today – which I’m doing now – yay, I realized that the flustering feelings align with me taking tamoxifen. It occurs to me now that it is meds that are causing this feeling, rather than my brain not behaving. There is some relief in that, as it means that when I stop the meds my brain will work better – but it also isn’t good because I need to be on the meds, and the alternative, and aromatase inhibitor, is so much more potent and likely to have worse side effects.

    For now I can live with it. Now that I know the source of it, when the flustering starts to happen, I can try and use some cognitive behavioural therapy to change my thinking and calm things down. In theory, that will help. I won’t know until I try it.

    The first step is always to identify the problem, so I can say that I have at least achieved that.

    Feature image by Hans-Peter Gauster on Unsplash.

  • Five years and counting

    Five years and counting

    Yesterday I had an important cancer anniversary. Five years ago, on December 17, 2014, I was officially in remission. It is the date that the last of my known cancer was removed from my body. It was a huge surgery.

    This year I had back surgery on Monday December 9th. It turned out to be two micro-discectomies / micro-laminectomies. The surgeon made about a 3 in incision in my lower back, and on the L4/S1 he moved the muscle toward the center of the spine to access the impinged nerve and shaved off some disc to clear the hernia. Then he moved the L4/L5 muscle to the left away from the spine, to access the hernia there and he shaved the disc there to free the nerves.

    Mostly my challenge now is just letting it heal. I need to alternate between sitting or standing (no more than 30 minutes), and laying down to give my back muscles a chance to rest. I’ll have staples in my back for another week, maybe two, and once the staples are out I need to slowly increase my activity but not overdo it. I don’t start physical therapy until six weeks post surgery. I don’t know yet where I’ll do that. I’ll need to do some research into great places for spinal physical therapy.

    With my back surgery, I haven’t spent nearly as much time reflecting on the anniversary of my cancer surgery. It hasn’t been a focus of my thoughts. In previous years I have found the anniversary to be a very sombre day – not a celebratory day, but rather a day where I felt sad for all that had transpired in the year previous as a result of my cancer diagnosis. I wonder if the reason I’m not feeling that way this is that is it that majical five year mark. That is a number that is used in a lot of research. For some types of cancer, you are considered “cured” if you haven’t recurred in five years. So five years is significant, and yet it really isn’t. It is just another day.

    With the type of cancer I had, the recurrence rate doesn’t really change after five years. Each year, I have the same risk of recurrence. To help reduce it, I’m now taking low dose tamoxifen (5mg). So far I have managed it OK, as long at it is working for me I’ll keep going on it for another five years. I’m also still doing lupron shots as my body is not yet in menopause. If all goes well, I will be stable on this regime for five years. Apparently, the protective effects of hormone therapy last well past the time you stop taking the meds. That being said, because of my age, I may on tamoxifen forever – who knows. As long as I’m not seeing side effects, I’m OK with it.

    And so today begins five years and counting ….

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