BC Becky

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

Category: Navigating the new me

  • The complexities / interplays of trust

    One of the “themes” that has emerged in my dissertation study is that of “learning about the disease”. When I look at the types of information I shared on my blog between diagnosis (June 12) and active recovery (Feb 3) is that of learning about the disease. I’m looking at the different ways in which I found myself learning about, and sharing knowledge about breast cancer. There isn’t a simple path – first you learn from A, then B, then C – it is a whole lot more complicated than that.

    I have commented several times that a friend very early on in the journey has recommended that I should “decide who I trust, and trust them”. I use that mantra quite regularly when I am second guessing what I think might be happening.

    Add to it the complexity and lack of clarity – you see, cancer treatment, and more specifically breast cancer treatment, isn’t clear cut. Yes, there are certain protocols that are followed in certain circumstances, but there is a whole lot of complexity – and that complexity means that there is never one and only answer. As we like to say in the design world, there isn’t one ‘right’ solution, it is just that some solutions are better than others.

    Now, if we look at all the different places I found information:

    • My body
    • Google (open searches)
    • Doctors (primary care, radiologist, breast surgeon, oncologist, plastic surgeon … )
    • Nurses of variety of sorts
    • Test results (pathology, MRI, ultrasound, blood tests)
    • Organizational websites (e.g. breastcancer.org)
    • Blogs
    • Face-to-face support groups
    • Online support groups
    • Friends
    • Family
    • …

    The list goes on. In some cases these different information (and advice) sources overlap. In others they don’t. I had to learn how to discern not only where I could get information, but also what types of information I could get from where, and how reliable that information was. There were so many nuances to information that I didn’t always appreciate at the time, and some that I still don’t appreciate.

    Three years later, although I have a much better sense of information and where to find certain types of information – I’m still finding the ground constantly changing. I think I know something, then something happens that causes me to question what I’m thinking. I doubt. I freak out. I go into high gear trying to get answers. I trust someone / something. I relax, but only until the next time it happens. I only hope that there will be longer gaps between issues.

    I have those of my healthcare team that I trust. I also hear stories, horror stories, from others that have me questioning – not my care team directly, but some of the facilities around my care team. Can I trust that pathology report? Can I trust the radiologist? Hearing the experience of others sometimes makes it more difficult to trust. I hear how others put blind trust in the system, and that trust failed them. I find myself being thankful for not having been so blinding in my trust. But then I also find myself stressed over things that I should not be. I find myself questioning things I need not question. The danger of being a well informed patient in part comes when the doctors forget to tell you things assuming you already know. Or when you think you know things so you don’t ask. Or when you doubt what you are being told. Blind trust can be dangerous; however, intentional trust can be liberating…the goal is to distinguish between the two.

  • The freezing surf

    The freezing surf

    This weekend I had the opportunity to learn a little about surfing. I first learned about the Send It Foundation from the Bay Area Young Survivors (BAYS) resource website. Sent It provides opportunities for young cancer survivors to get out in nature and do something – this weekend that something is surfing, stand up paddle boarding, and kayaking.

    I was worried a bit because I’m a little older that most of their regular campers. Actually, this weekend I was the oldest one there. But I could not turn down the opportunity to learn how to surf. I have always wanted to try it.

    The weather was beautiful but man that water was cold! Even the surf instructors said that the water was exceptionally cold. It has been windy the say before, so it stirred up the water from deeper in the ocean, dropping it by a few degrees. Someone said it was 50 Deg F (10 deg C). All I know is that it felt like ice on my hands. Luckily, our lead surf instructor decided that in addition to wetsuits, we should also have booties. They made a huge difference. I tried going out on Sunday without booties and could get in very far. My feet felt a “brain freeze” type sensation. Did I mention, the water was COLD.

    Overall, I had a hoot. In addition to learning a little about surfing, and riding a few waves on my stomach (I don’t have the mobility to stand on a surf board – at least not yet), I also got a chance for a little standup paddle boarding and kayaking. I really wanted to try out kayaking as it is something we used to do all the time. It was nice to validate that I could do it – although on Sunday my pecks were screaming at me.

    On Sunday morning my body was starting to hurt (in a good way). By the afternoon, I was finding every opportunity I could to stretch out my shoulders.

    I had a lot of fun this weekend – Thank you Send It Foundation, and especially Katie and Caroline, for giving me the opportunity to learn what it means to Send It!

  • Remission society and mourning my fantasy future

    Remission society and mourning my fantasy future

    I apologies to those who read all my blogs, as I am cross posting this. I’d love to hear answers from the various readers of my different blogs.

    I want to connect two ideas: the idea of remission society as described by Arthur Frank (1995), and the concept of the fantasy future that I learned while on a cancer care retreat at Commonweal (February 2015).

    Frank (1995) explains that anyone with a chronic illness lives in the remission society. Frank (1995) describes how “in modernist thought people are well or sick. Sickness and wellness shift definitively as to which is foreground and which is background at any given moment. In the remission society the foreground and background of sickness and health constantly shade into each other” (p.9). I interpret this as the way in which I shall never not be a cancer survivor. Breast cancer is a sickness that will always be part of my identity, regardless of how healthy I am at any given moment. It also will always affect my wellness. I will never be well in the same way I was well before cancer. I may be in remission, where I am not sick but nor am I well. I think of remission as this space in-between, or perhaps above or below, not on the same axis as the well or sick dichotomy.

    In order to deal with my emotional wellness, I needed to address the loss of my place in the well category in the well or sick dichotomy. While in active treatment, I was clearly in the sick category; however, once chemotherapy and surgery where done, and the last of the known cancer was removed from my body, I was no longer in the sick category, but also was not in the well category. I was in remission. It was learning of the falseness of this dichotomy that helped me move beyond it. During a group therapy session, the therapist made a reference to the idea of a fantasy future. That is, the concept that all futures are a form of fantasy. We imagine what our future life might entail (e.g. growing old together, remaining in perfect health), but the reality of life is never what we had imagined. A big part of my emotional healing was to forgive my body for the loss of my fantasy future.

    Another part of this reality, and one that I’m still working on, is that it should help me focus more on the present. What is in the now, and the short term future, rather than the long term future. This is, in theory, to help reduce anxiety today, but focusing on today rather than focusing on the uncertainties of tomorrow. However, this of course causes the problem I describe in my paradoxical future. Where I struggle with the challenging balance between planning for the future and seizing the day.

    Perhaps that is in part what it means to be in the remission society (as opposed to being sick)? When I was clearly sick, my focus was on a very short timespan. I saw life on very short horizons – tomorrow, next week, next month – never more than three months. I just couldn’t plan that far in advance. But now, after I have mostly healed from chemotherapy and surgery (I say mostly, because some of the damage will never be healed), I see the potential for those horizons. It is because I see them only as potential and not concrete that I run into the paradox. Sure anyone who is well will say that they don’t see the future in concrete terms, but in the scale between potential and concrete, a well person sees the future a lot more concretely and someone who is sick, who only has a sense of potential for the future. In this world of remission society, I’m somewhere in the paradoxical middle. Afraid to have a fantasy future, because I got burned by that idea.

    Do you have a fantasy future? How concrete is your sense of future?

    Feature image CC0 via MaxPixel.

  • Back pain (not cancer) and the need to self-advocate

    I thought I’d start by saying that this post doesn’t talk directly about cancer – in that my back pain isn’t caused by cancer as far as I know – it is caused by arthritis and spinal stenosis.

    My back pain had gotten so bad that I finally made the decision to try the epidural injection. When the shot was first described to me, I was scared away from it. I opted to use anti-inflammatories and pain killers as a way to manage my back pain. It mostly worked for a few months, but then things started get worse. It got the point where I was ending almost every day in pain. Cooking, something that I love doing, was one of the worst offenders – because it involved a lot of standing. My family doc had mentioned that the shot had helped a lot of her other patients, so with that, and the continued pain, I decided to give it a try.

    The process turned out to be a little more involved than I thought it would be. I had envisioned going to the doctor’s office, bending forward (or laying down on the examining table) and having a couple of shots placed in my back. I’ve had cortisone shots before (e.g. in my toe before my toe surgery), and so had thought this too would be that simple. Nope. This shot was done in the day surgery center. It wasn’t a surgery, but was still rather involved.

    The first point of pain was that I could not eat or drink anything before the procedure – as is common with most surgeries. Not a huge deal. I’ve actually gotten pretty used to it (ugg… hate that surgery has become normalized for me).

    The next point of pain involved getting an IV. This turned out to be much more of a production than I expected. I’m not allowed to get IVs in either arm. The lymphedema specialist was very clear on this one. Anytime I have an IV in my arm, there is a 1% chance of irreversible lymphedema. Within hours, my arm could swell to the point of it becoming a medical emergency. It would be much worse than the minor lymphedema that I experienced last year (which took wearing compression garments for 6 months to relieve). And so, this time I was firm with the staff that I could not take an IV in either arm.

    None of the nurses were comfortable with the idea of placing an IV in my foot, so the anesthesiologist was called in to do it. Unfortunately, he wasn’t able to find a vein. My veins were hiding away – as I had been dehydrated from the “no drinking” part of the preparation. After confirmation that the IV was required (the doc wouldn’t give the shot without an IV and some sedative), they called in another anesthesiologist who was could place an IV in my neck if needed. After a fair bit of a wait (they said it could be 2 hours, but it turned out to only be another 45 minutes), the new anesthesiologist came in.  I had realized after the first failure to find a vein in my feet, that I had been laying down while he was trying. Laying down makes the veins hide. I had suggested to the nurses that maybe he could try again while I was sitting up, but they opted to call in the second anesthesiologist instead. She listened to me. She had me sit up, and dangle my feet off the side of the bed. After a few minutes, and a failed first attempt, she was able to get the IV in the second attempt.

    I couldn’t help think about the difference in approaches – and how each made me feel. I hated the paternalistic bullying that I felt from the first anesthesiologist. His comment to me about how “it is OK to take an IV in my arm” despite what I had told him felt rather condescending. It was like after knowing me for 2 seconds, with little to no history of my condition, he had a better sense of what was good for me than I did. That my opinion on the matter wasn’t relevant to him. That being said, consent was needed, and I would not consent to an IV in my arm, so he had to do it my way.

    With the IV in place, I was wheeled in, given a little versed via IV, given the shot, and wheeled out. The entire procedure was maybe 20 minutes. The IV issue meant that I spend 3 hours in the surgery center instead of 45 minutes. Ugg.

    The good news is that so far the shot seems to have relieved a lot of my back pain. It isn’t totally gone, but it is no nearly as unbearable as it had been. I’m hoping that with the relief, I can now concentrate on some strengthening and stretching exercises that will reduce the likelihood of the pain coming back. I am hoping that the nerve block (which is what they did) lasts.

    I’m not at all happy about all the drama associated with getting the IV. This is something that I’m going to be struggling with for the rest of my life. I need to find a better way to ensure that people know and understand what it means when I say I cannot take an IV in either arm (even from a scheduling perspective, so that they have the right staff available when they schedule the appointment).

    I’m also left reflecting on what others who are not so willing to self-advocate do? Would you allow the anesthesiologist to place an IV in your arm knowing that it could cause permanent damage? How do you stay strong and self-advocate when you are also in pain? Why does navigating the healthcare system need to be so hard?

  • Making valuable choices

    Making valuable choices

    “I often think I have not yet been ill enough to know how to live. I still evaluate choices in terms of what counts on my resume, instead of asking whether I am producing something I think is valuable and if I am meeting people’s needs rather than fulfilling the demands of some system” (Frank, 1991, p. 119)

    I find the reflection of Arthur Frank to be rather interesting, as I find myself constantly asking the question “is this what I want to be doing with my time?” I do find that I think occasionally about my resume, but not as much as I used to. I’m less focused on collecting conference presentations or publications. I think more about whether or not fundamentally I’m doing what I want to be doing.

    I recently cancelled a conference presentation and trip. I had originally thought I wanted to do it, but after my last trip I realized that it wasn’t how I wanted to be spending my time. I want to focus on doing things that make my body strong and feel well. I hate not feeling well – and spending too much time travelling to conferences isn’t making my body well.

    Part of what helps ground me, and keeps me from falling into the traps of the resume building world is the time I spend with my friend Lori. She has metastatic breast cancer – that means her cancer will kill her. The only thing keeping her alive is chemotherapy. We spend time together hiking. We explore trails in the area, seeking out paths through trees and views of the valley. During out walks we talk about pretty much everything and anything. We reflect on life, often retelling the same stories over and over. In many ways, it doesn’t matter what the conversations are about, more that they are conversations that allow us to keep walking – and that walking helps keep our bodies strong. Walking with her reminds me to value my days and to keep living. Our time is precious.

    In addition to hiking, I’m looking into some gentle yoga classes. About 20 years ago I did yoga fitness classes, and on our world tour bike trip, my hubby and I had a morning yoga routine. We did daily yoga at Commonweal, but that was much more about meditation and less about stretching and balance. What I need now are routines that help me stretch, balance, and strengthen.

    I am finding myself back into the position of trying to do too many things, such that I cannot seem to get to any of them. I want to be biking more often, and swimming more often, and hiking more often, and then adding in yoga on top of all of that. Mostly, I could use a little encouragement to actually get there. To get too that yoga class … if I go to the one at my gym I can combine it with a swim. I’ve added it to my calendar, so we’ll see if that helps make it actually happen.

    The other big goal I’ve set for myself is to get my dissertation done by the end of the calendar year. If I cannot finish by December, I’ll need to apply for another extension to my program. I do not expect any problems with getting an extension, but really, I don’t want to need to be doing it. I’d like to get it done so that I can move on to the next phase – whatever that may be. I’m enjoying my time doing my dissertation work, but I’m also feeling like I need to start seeing the light at the end of the tunnel.

    And so, as I read, At the will of the body, I find myself reflecting on the choices I’m making about how I spend my time, and feeling like I am making choices that I feel are valuable to me.

     Reference:

    Frank, A. (1991). At the will of the body: Reflections on illness. New York: Mariner Books.

  • Selfishness to reduce stress

    Selfishness to reduce stress

    I took advantage of some spare time between appointments today to go for a walking along a lovely creek trail. I was struck by the beauty but also the sense of peace associated with the tall trees and the green around me. I noticed pretty purple spring flowers that are now in bloom. With all the water this winter, the hills are alive with green foliage. It is beautiful.

    I’ve been rather stressed lately with the worry of what is happening here in the US. I’ve been worried about what will happen to so many of my friends if the ACA is repealed without a plan to cover pre-existing conditions. I’m also worried about life-time maximums. I have too many friends who are undergoing really expensive life-sustaining cancer treatments. Lifetime maximums would be a death sentence for them. This has been weighing heavily on me.

    I am someone who sees the big picture. I find it frustrating when I see people making decisions based upon themselves, without any consideration for the bigger picture.

    But, what occurred to me while walking, is that I’m carrying a lot of stress that isn’t about me – and that isn’t good for me. I know it sounds selfish, and it is selfish, but I need to be selfish for the sake of my health. Not being selfish is causing me to carry a lot of stress that isn’t good.

    I am aware of my privilege, but today I found myself taking stalk of it. I am a white well-educated Canadian. My husband has a good paying job, with good health insurance. He is not likely to lose his job, and if he did, we could pack up and move back to Canada. If I chose to cross the boarder today for any reason, the likelihood of me being subjected to an invasive search by US Border Patrol upon my return is minimal – because I am a white Canadian who was born in Canada.

    The things that have been causing me a lot of stress lately don’t directly affect me. Now, I have some things that are causing me stress that do affect me (like my health, back pain, risk of recurrence), but I also have a lot of things that are causing me stress that don’t directly affect me (crossing borders, healthcare costs, insurance, …).

    While walking today I realized that I need to let go of the stress associated with things that don’t affect me. I can be bothered by them, yes, but I should not hold onto that unhealthy stress. It is not something I can do anything about. I remind myself that we would not be living here if my husband’s employment did not include adequate healthcare. That was part of the deal when we moved here. If the situation were to change tomorrow, we have options.

    It feels selfish to let go of the stress, but I also know that it is not serving me well. The world is gaining nothing by me taking on stress over things that I cannot control. And so, selfish as it might be, I’m going to try to let go of it. I will hold onto good stress – stress that helps me be a better person, but not futile stress – stress that I cannot do anything about. I will try to enjoy more the beauty around me. It is a beautiful spring day in California after all.

  • Yosemite and snarky comments on Facebook

    Yosemite and snarky comments on Facebook

    As I write this, I’m thinking about our last vacation. I really noticed over Christmas that my posts were missing something. I kept thinking about the snarky comments my father used to leave on my Facebook posts. I find myself checking for the comments that don’t come. I miss you dad.


    Tunnel View

    Last weekend we went up to Yosemite to experience some winter. Last January at Epic Experience I tried out cross country skiing for the first time since cancer treatment. I had no idea if I could do it. I was impressed that I managed 7km and could have skied longer but we were running out of time. So, I was encouraged to think that I could cross country ski at Yosemite, this time with my husband and no limits on our time.

    Badger Pass Cross Country ski area

    Becky taking a picture of Scott taking a picture

    It was warm out, and we forgot the wax at our condo, which meant we opted for a no wax skies. This turned out to be a really good choice as the conditions were typical spring skiing conditions – which means the snow in the shade is much colder than the snow in the sun, and this variability makes it really difficult to find the right wax for wax skies.

    Not exactly well marked or used trails.

    At one point during the ski we decided to explore some of the trails in the woods, rather than the groomed roadway. we expected the trails to be a little more defined and a little better marked. At several points we got lost, and had to backtrack to find the trail. Eventually we turned back the way we came, and tried another route.

    Becky navigating a small hill on an unmarked trail (another word for being lost)

    It was a lot of fun but turned into a much longer ski that planned. In the end we skied 16 km (10 miles). I was exhausted and very much pushed myself to the ends of my energy. But I did it. I was a lot stronger than I’ve been in a long time. I skied further than I would have the first time out before cancer. My regular 2-3 hour hikes and hour long swims are making a difference.


    Upper and lower Yosemite Falls

    On the second day it was overcast. It has rained in the night. Rather than skiing, we opted for a hike. Again, we ended up on a path that was more challenging than I expected. Because we were hiking in snow, we were wearing winter boots – which turned out to be useful when negotiating various puddles and small streams of snow melt that crossed the path. At one point we came to an area where the path was completely flooded out. The route around the path involved climbing up a large rock (about 12 feet tall) and then down the other side. The hiking was technical but I managed it quite well. I certainly pushed myself. We hiked 9km around Mirror Lake. It was a beautiful hike, made very pretty by the snow.


    Mirror Lake


    Where’s Becky?


    Mirror Lake from the other side

    Feature image and all photos taken by my husband (c) Scott Drennan

  • Lupron woes

    Lupron woes

    I’m coming to the end of my three month cycle with lupron. That is, every three months I get an injection of lupron to suppress my ovaries. This is part of my cancer treatment – hormone therapy. What I am finding is that as I come to the end of the cycle I get really moody. I get really sad, but also get frustrated really easily, and I find myself yelling at idiot drivers when I’m in the car. I am self-aware enough to see these things happening – to know that it is not my body in a normal state.

    I checked in with one of my support groups to learn that this is not an uncommon phenomena. It is something that annoyingly, doctors dismiss as if it is all in our heads. In many ways, all we need from our doctors is recognition/validation that the symptoms we are experiencing are normal. A simple, that sucks, I’m sorry to hear it but there isn’t much we can do about it would work. Not a blank stare and comment about having not heard of that happening before .. because really, it happens. When doctors don’t acknowledge the issue, patients stop reporting side effects. It is known as learned helplessness. If you appear to not care about the experience, then we will stop telling you about it. But this is not a healthy doctor-patient relationship. In a healthy relationship these things get acknowledged.

    Anyways, I’m writing this in part because I’m moody as hell so if you interact with me in the next two weeks you may notice that I’m a little on the crazy side. I’m also writing this because some of my readers are also on lupron. I want to validate for them that these feelings of moodiness are a normal side effect. I have not been that careful of ensuring I get the lupron exactly on time – that is I usually get it a week or two late. My oncologist tells me that is ok – however, if these mood swings are going to be the norm in that period of time then I’m going to be more careful about getting the shot exactly on time. Because the sadness in particular sucks. It drains me. It makes it difficult for me to concentrate and get work done. I really don’t need two weeks of it!

    Feature image: By Fvasconcellos – Own work, Public Domain, Link

  • Identity

    As part of the PhD process, I’ve been reading through my blog from the beginning. I wrote it, but I have never actually read it – at least not in this way.

    I am immediately struck by how my memory of the time doesn’t completely align with what I wrote. I know that what I wrote was a much more accurate reflection of what I was thinking than my memory of that time. There are a few places where I realize that what I wrote doesn’t even begin to capture what I was feeling – I can tell when I was holding back to help protect family members who were reading – but there were many times where I was fearful, in pain, and honest about it – that I don’t actually remember – at least until I read about it.

    I’ve also been struck by how well I managed to write through (and see) brain fog. Now I know there are additional brain fog moments – which I haven’t gotten to year – but certainly the early days of taxol, and the cognitive challenges I was facing – I wrote about in some detail. I will write more about this later, once I’ve read more, as I know that my cognitive issues continued for much longer than I realized.

    One of the themes of my posts have been my exploration around identity. Heck, the subtext of this site is “I never thought I’d want to identify as a breast cancer survivor”. I was deep into exploration of my identity when I got diagnosed, so it was definitely something that was on the forefront of my mind when I started this blog. What I find interesting now is that the things I was worried about then no longer worry me. I care a lot less about what other people think of me. I’d be naive to say I didn’t care, just that opinions of others are generally less of a concern to me now. It is less of a reason for me making the decisions that I do.

    I also wrote a lot about body image. I wrote about my concerns as I was making a decision about surgery. I remember being so opposed to and incensed by reconstruction, and then that changed – and yet the blog doesn’t even begin to express how strong my feelings were. In so many ways, in my memory of that time, I was over-amplifying my outrage in order to compensate for my true desire to reconstruct.

    Today was a bit of a landmark day – well maybe not landmark but important. Over the last few months, I have been showing a little of my naked body in the gym change room. Not usually a lot, but really, I was becoming less and less worried about putting moisturizer on my scars before putting my clothes on. In early days, I would only do this in the shower stall, where I knew I had complete privacy. Today, I chose not to worry in any way. I let my towel drop to my feet, and slowly applied moisturizer before putting clothes on. I just didn’t care anymore. I felt like I was even challenging others to ask the question. If anyone stared, it would be a great conversation starter. If someone asked about my scars or my surgery, I could explain, no this was not a cosmetic choice, rather it was cancer that forced my hand. I was OK with it before, but today, I was just a little more brash about it. I just didn’t care what other people thought.

    I actually seem to have much less of a concern about what the future may hold. If things don’t go well with our green card application, and we end up moving back to Canada sooner than planned, I’m much less worried about it. I used to worry about having to let go of my doctors – not that I’d want to – but now, I know that I’d be ok with going with the flow. Sure I wouldn’t be happy about it – I don’t want any external factors forcing my decisions, but I also know that I’d manage to do OK regardless of the circumstances.

    Today, I’m 3 years older than when I was diagnosed. I’m looking forward to celebrating many more birthdays. Who knows where (or who) I’ll be at this time next year!

  • More time together

    More time together

    I recall someone mentioning that one of the things they enjoyed during treatment was all the extra time they spent with their spouse. This is something that had not really occurred to me.

    My hubby and I spent every waking moment (pretty much) together for 16-months while on our bike trip. Then we spent 1 year living on opposite sides of the country when he moved to SF and I stayed in Ottawa to work on my PhD. So, we’ve see-sawed on this. We’ve spent a lot of time together and we’ve spend not enough time together. One of the reasons I chose to moved to SF when I did (rather than stick around longer in Ottawa) was that I didn’t like living apart. I remember telling myself that we would not intentionally do that again.

    When I was diagnosed, it caused a re-set on many things. It also caused us to spend more time together – and not just more time in the infusion chair – we really spent more time with each other. Looking back over my blog posts (part of my research), I notice that I mention conversations we had while walking together in the early morning (chemo mucks with sleep patterns). It also brought me back to when we were first dating. We would often go on long walks and chat about this or that.

    Reading about the walks made me realize that I’m missing them. With re-emergence life is starting to get busy again. We are starting to fall into old patterns. Not that we were not happy before, just that there was a new level of intimacy and connection that happened when we spent that intense time together. I didn’t realize I was missing it until I read about it on my blog. And so, with that, we shall try harder to make sure we have time in our week to walk – time to chat about anything and nothing all at once. We know that self-care is important, but couple-care is import too.

    Feature image (c) Rebecca J. Hogue

css.php