BC Becky

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

Category: Research Data

  • The Cost of Appearances

    In reading the chapter ‘The Cost of Appearances’ in Arthur Frank’s (1991) At the Will of the Body, reminded me of my first Doxorubicin (Adriamycin other wise referred to as A chemo) chemotherapy injection. I wrote about the experience very briefly in a post The First Day Of Chemo on my blog. In my blog post, I failed to mention two things.

    The first reflection was that my husband wasn’t with me when the nurse came to give me that particular infusion. The social worker had come for a visit and my husband went off to talk to her. Somehow, with four AC chemo infusions, my husband was not there for any of the A injections. Doxorubicin is pushed into the veins by the chemo nurse. The rate of injection is closely controlled and the patient is monitored closely throughout. For me, the process took about 10 minutes, as I didn’t have any immediate problems with it. Some people experience immediate heart issues, which is what the nurses are watching for.

    The second reflection was that up until the point of the A infusion I was doing fine. I had taken some premeds (mostly pill form steroids) and had a saline drip running through the hose that led to my port. When the nurse came with syringes filled with the ‘red devil’, which is what Doxorubicin is often called because of it is red, I was hit with an intense emotion. I began to cry. Immediately the nurse drew the curtain. This is what I was remembering when I read the chapter on ‘The Cost of Appearances’.

    Even though emotions are allowed to happen, and respected, they are also hidden. In the shared infusion space, if the person is happy and chipper the curtains remain open. The room is a large space shared by several other people also going through infusions. But the moment you start to have an emotion that is seen to be negative, the curtain is drawn. You are ‘given your privacy’ but this is more about being hidden from the others in the room. Negative emotions are not allowed to be shared in the communal space – you are only allowed to share the positive emotions.

    This need to only share the positive means that patients feel the need to always be putting on a positive face. It denies them the opportunity to express the true emotions that they may be feeling. Sure, there were times when I was genuinely in a chipper mood. Most of the time my outward emotions echoed my inner emotions – but there were other times when I was scared and yet the fear was not validated. Expressing it was hidden from others, such that others who may be experiencing the same fear are not permitted to see that it is normal – that others have that feeling too.

    It seems to me that today I am hearing more about the lack of validation of feelings. Beth also blogged about it today in her post I bet you are glad you beat cancer. Fortunately, for the most part my care team does validate my experience. I blogged about my recent oncology appointment, where my oncologist validated that my crazy hormonal mood swings were real side effects, and we put a plan in place to do something about it. The validation alone made me feel a lot better.

  • Living Pathography – An Open Dissertation blog

    I have decided to brush off the domain I had originally setup for my dissertation. I have much better sense of where the project is going – so I’m using that blog as a way to share my writing as I write, and my field notes and ideas as they occur to me. It is a living blog.

    David Elpern at http://pathography.blogspot.com/ defines pathography as “a narrative that gives voice and face to the illness experience. It puts the person behind the disease in the forefront and as such is a great learning opportunity for all care givers and fellow sufferers.” I chose Living Pathography for the domain name because all the current work on pathography relates to books rather than blogs. I think of blogs as living books – ones that can be updated regularly – but also ones that contain reflections of the experience as it is happening, rather than the post-processed reflective version that is presented in book form. There are less constraints when blogging, allowing the writer to express illness in a raw and authentic way, which provides a layer of learning that can be lost when the experience is distilled into a book narrative.

    I will cross post things here that may be of interest, but also, there are things that happen on this blog that are completely unrelated to my dissertation. I’ll try to keep the academic language (like the above paragraph) to a minimum on this blog, respecting that the focus of this blog is my emotional and physical journey.  The new site will focus on my dissertation as well as other academic papers, conference presentation, or book chapters associated with health blogging.

    If you are interested in following specifically my dissertation journey, I invite you to follow me at http://livingpathography.org or on Facebook at: https://www.facebook.com/livingpathography/

  • Overwhelmed with a huge sense of denial

    Overwhelmed with a huge sense of denial

    As part of my PhD research, I’m reading through this blog. It is an interesting experience. I wrote the blog, but I haven’t really read it. And I certainly haven’t read through multiple months at a time, from the beginning tracing through my journey – reflecting on what I wrote versus what I now remember of that time – thinking about the things that I didn’t write about.

    Today, I read a couple of blog posts from a pretty transitional time. It was my first academic conference that I travelled to after cancer – Emerging Technologies for Online Learning or #et4online. The previous years conference also happened to be the last conference I went to before my diagnosis. I wrote about my first day and how tiring it was and how I found myself negotiating my new identity, but also the second day where I laughed so hard at karaoke that my abs hurt, then went back to my room and cried.

    The #et4online conference turned out to be a rather transitional conference – in that it was the conference were #et4buddy began – which has since been renamed and thrived as Virtually Connecting.

    One of the things I didn’t write about was how I was really self-conscious about my hair before the conference and on the first day of the conference. In posts from earlier that month, I had written about how my grey post-chemo hair was driving me crazy to the point where I dyed it. It was thin. The first session that we did I was wearing a headscarf to cover it – but the next day I decided I didn’t care. I let go of my self-consciousness. I styled my hair into spikes because that is all I could do with it. It was thin. My scalp showed through – or at least that was my impression – and yet I decided I didn’t care. One of the reasons #et4buddy worked was because I let go of all my self-consciousness and worry, and just went for it.

    Upon reflection, that was really a transformation in my self-confidence. Once I stopped worrying about what I thought other people might think about me, I was able to just be myself. I was able to let go and enjoy myself, but also to be myself with a level of self-confidence that I have never had before. I stopped caring about how other people might superficially judge me. It was like letting go of a weight that had been holding me down.

    Within that same timeframe I became more aware of who my blog audience was. When I started the blog, I saw my audience as my family and friends, but also as healthcare providers. I even wrote posts specifically to healthcare providers (I still do from time to time). But, at some point, I realized that my primary audience was actually other breast cancer patients. I was sharing the details of my journey in order to help others understand their journey. I shared my coping strategies but also my decision making processes. Sure, sometimes articulating my decision making processes was so that my family better understood my decisions, but mostly it was to help other breast cancer patients make their own personal decisions.

    Another area that I am noticing is my changing view of what it means to be an engaged patient and what it means to be a patient advocate. I struggled with what my advocacy was. I still struggle with what my advocacy is, and what that will mean in the future.

    And yet, as I read through all this I’m also overwhelmed with a huge sense of denial. I feel like I am not living in this body. I am looking on the past three years of my life as if it didn’t all happen, as if I am not in the position that I am in today. I feel like I want to just stick my head in the sand and pretend it all way. I want to wake up and have it all be a bad dream. No, I’m not a breast cancer survivor. That didn’t really happen to me. But I don’t need to pinch myself to know that it did happen. I just need to look down at my hacked up body. I see the scar that runs from one hip bone to the other, and the numb appendages on my chest that look like breasts but don’t feel like anything. And I know that I am not having a dream. I find it funny that I write this and yet in the same breath I talk about my improved body image! But I also look at my accomplishments. I look at how I have a much healthier sense of body image. Shedding my fears of what other people think of me has made me a much more confident teacher. Pushing through recovery and regular exercise means I am hiking and swimming further than I though I ever would. I am getting stronger every day, and that is something that I cannot deny.

    Feature image from #et4buddy Hangout on Air.

  • Food Angst … never surrender

    For much of my adult life, my diet has been about control. I can choose to control what I eat, and as a control freak that is important. I’ve tried several different diets to no avail. Mostly, I’ve learned that my body doesn’t like some foods and it likes others. I’m lactose intolerant but my body is happier when I eat dairy – so I try to stick to dairy that my body likes, perhaps with the exception of ice cream. I may eat a little more ice-cream than I should, but at least it is organic “healthy” ice cream. That’s got to count for something.

    I went through a phase where I didn’t eat gluten. That didn’t go over well. My body likes wheat. I’m allergic to alternatives (quinoa and spelt).

    I’ve learned to listen to my body. Certain foods cause it grief (e.g. tomatoes cause eczema to act up, peppers and walnuts cause heartburn), so I avoid them. Other foods I enjoy.

    Going through chemo has meant that some rules had to be applied to what I eat – e.g no sushi or cold cuts for risk of listeria – but otherwise, all bets were off. I was given free reign to eat whatever I wanted, in part because there were days that I just needed calories. And there is that trust that, since I’m considered “healthy” for a cancer patient, that my diet and exercise regime are already good.

    However, at support group the question comes up “how has your diet changed as a result of cancer?” There is often a discussion about the link between cancer and sugar. I’ve done those diets too BTW – I went totally off sugar and lost a lot of weight but also lost energy. I went totally off sugar substitutes, not wanting my diet to be full of chemicals. I now generally avoid refined sugars, but I am guilty of eating pasta and white bread but I avoid potatoes. I find that too much of diets are fads – and little is truly known about what actually works or doesn’t work. I question whether there is such a thing as a “cancer diet”. Sure, people who used to eat a lot of fast food and junk, stop eating fast food and junk, they do better – but does that mean that sugar is the cause? An the article that crossed my stream today about the link between soy protein and cancer. This particularly annoys me, as it treats all soy as if were one thing. So the highly processed soy protein isolate used in the study is being made equivalent to the whole soy bean (edemame). When I asked the cancer nutritionist about soy, her comment was that whole soy such as edemame and tofu were good, but soy protein isolate which is often used in supplements (and check your granola bars and breakfast cereals) is a bad thing. So, when I read that article, it feels more like fear mongering about all soy, when in fact, some soy might actually be good for you. Note that the asian diet that is mentioned, which is typically a low cancer diet, involves a lot of whole soy products rather than highly processed derivatives.

    Before cancer, I ate a pretty healthy balanced diet, with mostly organic fruits and vegetables and definitely organic meats. Frankly, there are so many variables at play when it comes to diet – I’m just not convinced that whether or not I choose to have a little more ice cream or a brownie will have any affect on my overall health. I just hate being subjected to the guilt around my diet. I hate questioning and feeling guilty because my body is craving red meat, so I choose to have a steak for dinner (buffalo, not beef – so hormone free, grass-fed).

    I don’t want cancer to dictate what I eat. Having cancer means I have lost control of a lot what my body does. I have lost control over how I physically feel, and I’ve completely lost control over my schedule (as much as I try to manage it), and if I could only gain control over my red blood cell production! There are too many areas of my life where I have lost control. I’m not willing to give up control over what I choose to eat. Now, there are days when I don’t really have much choice – queasiness or mouth sores have severely limited what I could eat. I just hate that “cancer diets” propose to make me feel guilty for eating food that I want to eat!

    I’ve decide I have a new theme song when it comes to cancer diets … I’m going to “Never Surrender” (one of my favourite songs when I was teenager) …

  • Not talking = not blogging

    I’m amused that over the last few days it has been extremely difficult for me to talk, and somehow that has resulted in me not blogging.

    I find myself wondering if it is because I cannot even talk to myself! But then, I usually write in my head.

    Truthfully, it is probably because I haven’t done much over the last few days but watch TV and sleep, so I don’t really have much to write about (or talk about).

    My mouth sores got bad enough for me to ask for stronger drugs.  I have been taking liquid morphine for the last couple of days – originally every 2-3 hours, but now I’ve backed off a bit. I slept through most of last night, which has gone a long way to helping me heal. Prior to that I was waking up hourly (or after morphine every 3-hours) with sharp mouth pain. The sore on the back of my mouth where the bottom of my tongue attaches is the worst. Simple things like eating, talking, even licking my lips are not possible – and the difficulty in clearing food from my mouth and brushing my teeth! So many everyday things we do with our mouths.

    But, it is getting better. I no longer feel like my tongue is too big for my mouth – it fits again. The roof of my mouth is still rough, but no longer feels like super scratchy sandpaper – more like the fine grained black sandpaper.

    I have a whole new empathy for those who have had severe side effects with chemo. I can appreciate so much more how people find exercise to be a challenge (having not done any since Tuesday).

    My excuse for not exercising has been an inability to hydrate enough. On Tuesday I rode my bike out to my eye doctor appointment, and I struggled with the heat and inability to suck water from my water bottle.  The food I had brought with me to help keep up my energy stung when I tried to eat it. In addition to pain from motion, I found that I could not eat anything that was the slightest bit acidic or salty. Fortunately, after the appointment Scott could pick me up afterwards and take me home.

    Today I’m going to go to support group, knowing that few people are apt to be there on the long weekend, and I cannot really talk. It will be nice (assuming it is even open) to see familiar faces and just be in the space with people.

    We had originally planned to go on a bit of a bike adventure on Sunday – taking the train to downtown San Francisco and riding towards home – however, that microadventure plan is now on hold. We may try it in a couple of weeks if the new chemo regime doesn’t take too much out of me (it is supposed to be easier, but the first couple of weeks might be difficult). Instead, tomorrow we will venture out to the coast for a walk on the beach. It has been a while since I’ve been out to see the ocean (rather than the Bay, which we see almost daily). I look forward to the smells and the sound of the rolling and crashing waves.

  • Feeling my nadir today

    For the last couple of rounds of AC, I’ve actually felt quite strong on my nadir day (day of lowest blood counts). Today, I’m tired.

    My biggest struggle today is mouth sores. On the weekend I started to develop mouth sores (the ones on the underside of the tongue are especially painful) and along with it thrush. I’ve now started treatment for the thrush, so my mouth isn’t as full of gunk, but boy do the sores ever hurt! I’m on a pretty much liquid diet, as solid foods get stuck under my tongue and in the back of my cheeks, and I cannot move my tongue well enough to clear it out. I also cannot easily open my mouth wide enough to do a decent job brushing my teeth (plus with low platelets, I need to be really careful with teeth brushing as my gums bleed).

    It all sounds rather awful, and feels that way too, but in the grand scheme of things is it more an annoyance that a real problem. I will need to run out to Costco later today (after the plumber comes to look at the toilets) to buy more ice cream. The coolness and non-acidity of ice cream actually relieves a lot of the pain in the mouth and ensure I get in some calories – however, they are not enough nor the right calories for exercise.

    I biked to an ophthalmologist appointment yesterday – but that proved to take too much out of me. Biking in the sun, without adequate hydration and an inability to suck on the water bottle (and pain when opening mouth wide enough to get the water bottle nub in my mouth) meant that I was exhausted by the time I arrived (about a 40 minute bike ride). So until I am able to eat solid food (even soft solid food) and hydrate adequately, biking is out. Today is officially an exercise rest day. Tomorrow I’m allowed to get back into the pool, so if I don’t have the energy to bike (cause I’m not eating the right foods today), I can at least do a gentle swim.

    I’m looking forward to the rebound!

  • A challenge for my Canadian friends (limited time offer)

    So, my fundraising for the Avon Walk (equivalent to the weekend to end women’s cancers in Canada) has pretty much stalled. I know that I have a lot of Canadian readers, who won’t get tax receipts for donating to my Avon walk, so I have a deal for you.

    If you make a donation to support someone running in the Terry Fox run this year, or a donation to the Terry Fox Foundation, and let me know, I’ll make the equivalent amount as a pledge on your behalf to my Avon walk ($2000 max on this offer). So you can donate to a great Canadian-based charity and get a tax receipt, and we will donate to a US charity – and twice as much money will go to charity.

    You can donate directly to the Terry Fox Foundation on their website: http://terryfox.org. The Terry Fox run is on September 14th this year, so this offer will expire on that day. When you let me know how much you have donated, also please let me know what you’d like to say on my banner page at: http://info.avonfoundation.org/goto/rjhogue.

    Thanks everyone!

  • The regret test

    My husband and I can be rather frugal with our money. This approach has allowed us to save, but also allowed us to take 16-months off work and bike around the world. It means that we have learned to always question when we buy something or spend money. We sometimes catch ourselves spending too much time debating over the cost of something trivial (like spending 45 minutes on the phone with t-mobile to figure out why I was charged $1.33 and getting it credited).

    One of the biggest things that has changed since my diagnosis is that I often make decisions that involve spending money based upon ‘the regret test’. What do I mean by that? I mean that I ask myself, ‘will I regret not doing it?‘ If the answer is yes, then I worry a lot less about the cost of the thing.

    What is interesting about this, is that often I’m not spending that much more money and sometimes it even ends up being less expensive. I think I’m just lucky when it comes to booking air travel – but also I’ve learned a few tricks like checking online before calling in a booking because the telephone agents always seem to quote $200 more than the online price and when you challenge them on it, they can get you the online ticket price!

    So, today I got to use up my credit with Air Canada (I had to cancel a trip when I was initially diagnosed) for a trip to visit my parents during American Thanksgiving. I managed to use up my credit and book my husbands flight with the price on the website, which today is $100 cheaper than it was when I checked two days ago.

  • Queen of wishful thinking

    When it comes to the entire surgery process, I find myself falling into the realm of ‘queen of wishful thinking’. I had convinced myself that ‘flat’ was that way to go. I joined a great supportive Facebook group ‘Flat & Fabulous’ and found that I was creating a new vision of myself that involved a beautiful flat chest – but it also involved a beautiful flat abdomen with no extra body fat.

    pushing_ball_uphill_4474x100pxMy reality is that I shall always being carrying extra body fat – if spending 16-month riding my bike around the world didn’t cause the perfect ‘flat’ body that I had envisioned then why do I think that cancer surgery would fix this. I’m in great physical shape now, and yet I still have 40% body fat. It isn’t something that will be changed by eating right and exercise – cause, in reality I do that already. As I age, I’m destined to gain a few more pounds, not loose them, and when you add in the early onset menopause (drug induced) that is part of the long-term treatment for breast cancer, my battle to keep my weight from increasing is all up hill.

    Another reality is that women who look as young as I do, and don’t have breast, but do have buddha bellies get as “when are you due?”. Our society associated that shape with pregnancy.

    So when the surgeon burst my bubble, I’ve had to do some serious reflection. What do I really want to look like after surgery? Long-term what do I want my body to be, in order to have a positive body image? What is a reasonable lifestyle for me to maintain?

    This last question is probably the most important. If my body image is tied to a lifestyle then I most definitely need to ensure that I’m not setting up unrealistic expectations of myself. I should not expect that magically, after double-mastectomy surgery that my body fat will just suddenly reduce itself. That I’ll magically be reformed into this skinny girl with no breasts and awesomely toned body – that is just me being completely unrealistic.

    Realistic expectations of mastectomy with my body type include having a concave space under my arms where currently I have fatty breast tissue. Not ‘flat’ space there, rather concave space! Reconstruction would be required to put some fat there, otherwise, I’ll have a gap between my armpit and my stomach fat where the ribs can be felt. My thoughts and focus had been on the front view, but I had not considered the three-dimensional view of my body.

    So now I’m looking at reconstruction options. There is a great video here that explains the various options. I’m strongly considering the procedures that involve re-allocation of my own body tissues. In addition, I’m looking at immediate reconstruction. This is a real option because I’ve done neo-adjuvant chemo, so the surgery will not delay chemotherapy. The only unknown variable is radiation. The surgeries that involve using my own tissue mean longer surgery (8-12 hours), longer hospital stay (4-5 days), plus longer recovery time (6-8 weeks). But from the reading I’ve done so far, I’m an ideal candidate. I have enough extra body fat, but not too much such that I shouldn’t have an increased risk of complications. It will be interesting to see what the surgeon has to say.

    So, now I’m in wait mode for a few weeks – while I recover from my last AC chemo and subject myself to the first couple of rounds of T-chemo (the first two or three rounds are supposed to be the hardest on this new chemo, as your body needs to adjust to it). One step at a time!

     

  • Reaching out

    It is difficult when you are new to someplace to start to reach out and meet new people. It is especially difficult to reach out when you have cancer (and it is obvious).

    When I first moved to California, I spend a fair bit of my time trying to make connections with people here. I joined a couple of “meet ups” and I went to church. I was making a real effort to meet new people and make connections. Unfortunately, after diagnosis that stopped. I did meet new people, but mostly they were related to my cancer diagnosis, rather than me (although I have to say I’ve made at least one friend through the cancer process). It has been very difficult to even think about going back to even the things in which I had already been doing, never mind doing something new.

    After my first service at the Unitarian Church in San Jose,  I decided we would give it a try in the fall when they went back to the regular church schedule. Like many Unitarian Churches, their summer schedule involved special lay led worship services, which are not always easy for new comers. However, shortly after the service I attended in May, I was diagnosed with breast cancer. I found myself wishing we had reached out to the congregation sooner, so that we would have had the support that comes with being a member, but also, found myself afraid to go to the congregation, as now I wasn’t just a normal person off the street, I am someone who is coming with a need (or at least a potential need).

    To help make the transition, I did ask our minister from Ottawa to make an introduction. That way, when we arrived, we would not be complete strangers to the church. But still, I was very hesitant. I certainly wasn’t willing to go alone to service – it was not optional that my husband join me. Part of me felt the connection to this congregation the first time I attended back in early May, but part of me was afraid to introduce myself to a new community. How do I even begin to say who I am now? How is my headscarf not an elephant in the room? If (when) we need help, how will be able to ask for it, having not first arrived in a position to give?

    So today, when we finally were in town on a Sunday (another challenge with reaching out is that we often go sailing or camping on the weekends). We made the leap and went to church. Truthfully, church went well today. The service was good and the people were really welcoming. We happened to attend on a Sunday where they had a special lunch for new people – so we stayed and got to meet a few people and the two ministers in a much smaller group setting. I was struck by how similar the people are to the people at church in Ottawa – they are all Unitarians after all! Although in the small group I did choose to disclose that I had cancer, I didn’t feel like it was something that was a barrier. I could have chosen not to say anything, and people would have just listened to what I had to say (we were sharing a bit about our spiritual pathways). In hindsight, I didn’t actually share that much about my spiritual path because I was so focused on getting the words out of my mouth … “shortly after I moved here, I was diagnosed with breast cancer” … I cannot remember what I said after that, but I quickly finished off my sharing and allowed the conversation to move on to the next person. And that was it. I felt accepted for who I was, and where I was, and no pressure was placed on me (or us). We were encouraged to get involved to the level in which we felt comfortable. Actually, as far as welcoming goes – this congregation did a pretty darn good job.

    So, we shall reach out a little further and join the monthly potluck supper group. It is a chance to meet the dynamically different people involved in the congregation in a small group setting – with no pressure to be anything except myself. This reminds me why I’m a Unitarian Universalist 🙂  … maybe on Friday I’ll reach out to one of the meet up groups that I was a part of before my diagnosis …  but I’m not sure I have the strength/courage to do that just yet, we’ll see.

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