BC Becky

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

Tag: Identity

  • Joining the cancer blogosphere

    I have been blogging for a few weeks now, but I have been very hesitant to read other people’s cancer blogs. I’ve been hesitant to reach out to too many others who are going through similar experiences to mine. In part, this is a form a denial, in part it is a form of fear.

    I have strong online relationships. I am part of several online communities where I find strength and much needed support. But, to join a cancer community means to admit that I have cancer – but there is more to it than that – it is the fear of joining a community and then losing people in that community. I’m OK with admitting I have cancer, but I’m not OK with admitting that it is something that might one day kill me. I’m afraid that if I develop solid friendships with others who have cancer, that I’ll lose them. I don’t want to have to deal with the death of a good friend – and so, I hesitate. I hesitate to reach out too much to others who are also going through this experience – not because I don’t want to meet these people or get to know them – just that I don’t want to get to know them and then lose them.

    But I also realize that I need them. I need to read about others experiences. I need to learn from them. I also need to share my experiences, so that others can learn from me. It is this need that is driving me to participate in the online communities (and face-to-face support groups as well), but I must admit, that I do it with hesitation and a bit of fear. Afraid to get too close to anyone who I might lose.

  • I’m ready

    I am so ready to make the transition from someone with breast cancer to someone fighting breast cancer. Tomorrow morning, bright and early, I begin chemotherapy – assuming the heart ultrasound and blood tests say I’m healthy. Ironic (in an Alanis Morissette kinda way), the idea of being in ‘excellent health’ and having cancer at the same time.

    I’ve got everything laid out for my ‘cancer’ bag – that is the bag I bring with me when I go up to Stanford for the day. I received it from BC Connections, a local Breast Cancer support organizations. It has proven to be very handy (both the bag and the organization itself, as this is where I go to support group on Saturday afternoons). I have even chosen my clothing for the day. I bought a new t-shirt that has a low neck line so that my port is easily accessible. I’ve included:

    • A nice warm blanket/wrap that I received from the Three Willows church where my in-laws go (thank-you).
    • A scarf that I received from my friend Maha in Egypt (thank-you).
    • Care squares that came from a family friend (thank-you).
    • A teddy bear that Scott brought me when I was in the hospital for surgery before we were married (with the Canadian connection Hudson Bay sweater).
    • Some snacks and electrolyte mixes to add to my water bottle.
    • My cancer treatment binder, which includes a bunch a cards and the caring card I received from the Ottawa First Unitarian Congregation (thank-you), the card my mom sent with a hope rock on it, and various post cards sent from distant friends (thank-you).
    • Headphones, so I can watch TV or listen to music or podcasts. I have a collection of Vinyl Cafe Stories and Under the Influence podcasts preloaded on my iPhone.

    2014-07-06 07.03.36I hope I’m not forgetting anything. I will also bring both my laptop, my iPad, and iPhone. I have no idea what I’m going to feel like doing during chemo. Scott will be there to help lug my stuff – bringing both the laptop and iPad seems a little redundant, but if I am in the mood for any serious writing (beyond blogging), my laptop has scrivener on it. Plus my laptop let’s me watch TV shows from Canadian networks, which I cannot do on my iPad.

    I’d also like to thank John and especially Alison for the lovely quilt they sent. BC Connections had quilts for anyone going through chemo but I chose not to take one, as I see so many other women that need it more than I do. The following Monday, I received a lovely quilt from Alison and John in the mail. It has turned out to be perfect for our bed, as our down duvet was too warm for this time of year, but going with a just a duvet cover wasn’t warm enough – we were having trouble finding just the right balance, and the quilt is proving to be just that.

    Everything that I’ve read so far about chemo side effects says that it varies by the person. I’ll either be tired for the first few days or overly energetic for the first few days and then tired towards the end of the cycle. If you know me, you know that I like to plan things. This whole uncertainty over how I will react is driving me crazy. I just need to know if I’ll be able to get some work done for a few days here and there or not.

    Since diagnosis, my life has been pretty focused around improving my health (lots of long bike rides and long walks); enjoying myself (sailing, going to Yosemite for a couple of days; various medical tests, scans and appointments; and learning a whole lot about breast cancer in general, and specifically about the treatment options for the type of cancer that I have. I have put all my contract work on hold (fortunately, that was possible). I’m now starting to go stir crazy, and hope to get back to some of that work – however, I just don’t know how I will react to chemo, so I’m afraid to jump into anything right now. So the wait game continues … today I wait … I’m going to go for a swim, go out to the market (now that my stomach is sorted, we need some food in the house – although chemo may change that too), and maybe even go for a bike ride.

     

     

  • I’m an educator (and my public service announcement)

    A couple weeks ago I was reflecting on who I am. I reported to the blog, that I am an academic, but further reflection has me questioning that. Mostly in the form of what type of academic. Since diagnosis, I haven’t been able to read a single academic article. I’ve browsed through a few, but my concentration and interest have not been there. I’m may not be approaching this ‘cancer’ problem as an academic, but I do want to approach it as an educator.

    I don’t call myself a teacher. To me, teacher means the person who leads K-12 classrooms – a person who helps kids learn. I don’t work with kids. I don’t even work with the average adult. When I teach, it is usually to professionals – I teach teachers and doctors how to use technology. I educate, I don’t teach.

    I also educate through my writing. As an instructional designer, I have done a lot of educational writing. I create training programs and packages that are designed to help professionals learn new skills.

    But what does that have to do with this? I find myself wondering how my cancer can be turned into an educational experience? Who would I be educating? Who can learn from my experiences? How can I make most out of this experience from an educational point of view.

    In the first part, I want people to learn what a ‘lump’ in the breast feels like. I kind of wish more residents were involved in my care at Stanford – more people taking an interest and learning from my experience. I had no idea what a cancerous lump felt like, even when it happened to me. I recall in a health education class the nurse bringing in a mannequin breast that had a lump in it, to give us a sense of what a lump felt like. I also remember never being able to feel that lump. I remember feeling my young breasts as a teenager and wondering if everything I felt was a lump – as I had pretty lumpy breasts (not a lot of fatty breast tissue back then – perhaps they taught the class a little too early for me!).

    This links me directly to a charity that Sarah Outen supports on her round-the-world human powered journey. I’ve been following Sarah’s journey since it began a couple of years ago. One of the charities she is fundraising for is called “Coppafeel“, and it is about awareness for breast cancer in young women. The idea is to get women used to the habit of checking their breast every time they get in the shower. They will even sent you reminders if you sign up. I actually don’t recall where or when I picked that habit up, but I know that I did. I was never good at the laying down in bed and checking once a month, but I did form the habit of inspecting my breasts every time I got in the shower. That is how I knew that something had changed – that after my bike ride June 1st there was a mass there that had not been there before. I didn’t realize at the time that it was cancer – I thought that after the somewhat rough bike ride (a lot was on dirt path) that perhaps I had strained something – although it wasn’t sore, it was just solid. One thing I really want to point out here, is that it isn’t necessarily about feeling a ‘lump’, rather it is about noticing a change. In young women (under 45) most breast cancers are found through self-examination – you feel something has changed.

    What a lot of people don’t realize is that although you are at increased risk for breast cancer if an immediate family member has had it, “about 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.”(http://www.breastcancer.org/symptoms/understand_bc/statistics). So, although there is a lot of press about the hereditary breast cancers, for the majority of women, it is a completely unexpected thing that happens. In some ways, the press about hereditary cancers hinders things like screening, as women think that because no one in their family has had it, then it couldn’t happen to them. I certainly thought that. Breast cancer was never something that I was even remotely concerned about (although I still inspected my boobs every time I got in the shower, cause, why not?).

    So, all you women out there, get in the habit (especially if you are too young for routine mammograms) … every time you jump in the shower, coppafeel!

  • Scrapbooking

    I saw a Facebook post from a friend the other day about scrapbooking. It isn’t something I’ve wanted to do before – what on earth would I do with a scrapbook once it was done. But now, I’m receiving so many wonderful post cards and other such beautiful ‘thinking of you’ that my cancer binder is filling up (I have a binder that they use to chemo treatments and reactions, where I started to put the various cards and letters).

    I know nothing of scrapbooking, so I decided to Google it. Apparently, cancer scrapbooking is quite common – it is a way to trace your journey and give it a life of its own. There are many different layout suggestions, but these are focused mostly on a way to capture your journey – which I’m already doing in this blog.

    So friends who are scrapbookers, any recommendations for a good starter-kit or must-have items? I don’t really want more stuff (we have a small apartments and are constantly looking for way to remove stuff not add it). The purpose of the scrapbook is mostly to help keep track of all the wonderful gifts I’m receiving and the various warm thoughts – it is is more of a ‘we are thinking of you’ scrapbook rather than a cancer book per se.  Most of my journey itself will be posted on the blog (with lots of photos) and my quantified medical self is tracked in my cancer binder already.

  • T-shirts

    When I was young I remember a T-shirt my mother used to wear that said “Don’t stare, grow your own” … A friend emailed me about a friend going through chemo who had a T-shirt “Like breasts? You can have mine, they are killing me!” Morbid but funny.

    I find myself wanting a new jersey for biking. One that says something like “I bike to survive … ” or something like that … cause really, I bike to stay sane, and when I start going through chemo and doing crazy things like trying to bike Mount Hamilton during chemo (cause I wanna), then I need all the support from passing cyclists I can get!

    I should also make a shout-out to a friend from our Going East tour – Jim is a real inspiration for me. When he was diagnosed as HIV positive back in the 80s (when so little was known about HIV/AIDS) he hopped on his bicycle and went on tour. He attributed his riding to his survival. Every time I get on my bike to ride now, I am reminded of our brief visit with him.

  • TV Breast Cancer

    Now, I don’t watch a lot of TV, so my perceptions may be off a bit, but I’m still a little mad. When someone on a TV show gets breast cancer, they don’t portray it right at all. They don’t show you the decisions that need to be made. They seem to always show you someone going through chemo – which many women with breast cancer don’t do – and they don’t show you surgery – which pretty much all women with breast cancer do. By dramatizing the whole experience they do nothing to prepare you for the reality of it. This makes me rather mad!

    Specifically, I remember last year one of the lead characters on Parenthood had breast cancer. She lost her hair, she got sick, she ended up in the hospital at one point because she ignored an infection – but they never dealt with the surgical implications of breast cancer – the dealing with what it means to have a part of your body cut off – and what it means in our society to not have a breasts. So yes, I’m expressing anger again, so perhaps that is the phase I’m beginning to enter in ernest.

    I’m also annoyed at our society. The entire concept of reconstruction is so much more emphasized here in the US. I recall one of the women in my PhD class commenting that this was “silicone valley” as in the land of fake boobs (she was mixing up LA and San Fran) – but from a breast cancer perspective, it certainly is the land of fake boobs (although from what I understand many people choose techniques that use their own body fat rather than silicone implants). It is like people will think I am weird if I do not opt for reconstruction – and yet I see all these non-essential surgeries and the extra pains that women go through – and I question it. Why would I want to subject myself to that (yes, there is some irony here, in that I had PRK eye surgery, but there was a defined quality of life benefit for that – I just don’t see that defined quality of life benefit for reconstruction). Many of the women I know going through reconstruction did not have chemo – so they had one less toxic experience with breast cancer – but still.

    In some ways, I think dealing with an inside cancer is harder and in other ways it is easier. With a lymphoma, it is much more serious because you cannot simply “cut it out”, but then you also don’t have to deal the surgical implications of cutting off a body part. I also feel for those who have slow growing cancers, who cannot actually feel their tumors. If you don’t have the physical evidence of the cancer, the doubt creeps in – do I really have cancer? Worse is that until treatment, you don’t feel sick – so there is also the perception that it is the treatment that makes you sick. I’m not quite in that case, as I have a large mass in my left breast. There is no mistaking it. It is there. But I do feel it regularly, and I question, “it is getting smaller on its own”, “it is spontaneously curing itself”, “maybe I don’t have to do this chemo thing after all”. I can only imagine how much worse those doubts would be with an invisible cancer that you cannot feel.

    Right now, I’m feeling strong. With each passing day the wound associated with the port is healing. I’m hoping for a longer bike ride today – might even try riding one of my upright bikes. I should be able to swim by next week, depending on when the third biopsy occurs. By not have surgery first, I’m loosing some certainty in the cancer – as they cannot fully stage it until it is removed and full pathology is done. I’m finding that the imaging doesn’t provide enough detail – to go from one larger tumor to two smaller ones under MRI which was not seen on ultrasound (although they are double checking on Monday) and mammogram, demonstrates the lack of accuracy in imaging.

     

  • Preparations

    I’ve talked before about how other things I have done in my life have prepared me well for this new journey. At the chemo class yesterday, the nurse talked about taking it one step at a time but also about celebrating between the various phases. This is very much the same advice given when you start a PhD. It is said “this is a marathon, not a sprint”.

    Also similar is the challenge in planning. Many of my PhD friends can relate to the challenge in planning things like family vacations. There are so many variables, and so many uncertainties, that planning is difficult. You want to make sure you are in a good place to actually take a break.

    And I’m a planner. I’m someone that likes to have things mapped out. I had my schedule mapped up to the end of 2014 – exactly how I would get my data collection finished, the number of trips to Ottawa, various conferences. Now I just don’t know. It is nice (and yet scary) to have a start date, but there are still so many uncertainties. I’ll get to learn a lot about blood counts – if any of my counts fall too low, they will pause treatment to allow them to recover. This of course, will put a wrench into any plans that I make.

    Fortunately, I also have the experience of our bike trip to draw on. There, we adapted. Although we still had some scheduled components. We had container ships to catch – and the ships wouldn’t be waiting for us – we needed to be there when they were there. At times, that meant using trains or buses to help us get to where the ships were going to be. We had to adapt our plans.

    With the shift of chemo start to July 7th, and hopefully not too many doctors appointments next week, we have a chance to get away for a few days (we hope). Well before the whole cancer thing, we had booked a campsite up at Yosemite for a few days. Although we had originally planned for four nights, we may only go up for a couple of nights – but still, it will be nice to get away. I have not yet been to Yosemite, so it will be nice to see what all the fuss is about.

     

  • Significance of dates and getting ready for chemo

    It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

    Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

    On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

    We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care. Photo Jun 25, 2 35 31 PM

    Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

    I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

    I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

    Chemo calendar:
    July 7 – AC
    July 21 – AC
    Aug 4 – AC
    Aug 18 – AC
    Sep 1 through Nov 17 – weekly T

  • Should I blog?

    As a blogger, I often get asked ‘should I blog?’  I can testify as to why I blog and the benefits that blogging provides for me, but I also don’t think that blogging is for everyone. Blogging is work. Even with inspiration a single blog post can take 1-2 hours to write. If you aren’t a writer, then the act of blogging can be difficult (heck, even if you are a writer it can be difficult).

    One of the benefits of blogging versus writing for other mediums is that you have complete flexibility. You don’t have a requirement to write every day or every week. You can write whenever you are inspired. That being said, if you don’t write regularly, then your readership will fall off – people will worry about you – because they use your blog as a way to gauge how you are doing.

    As a cancer blogger, one of the benefits I’ve experienced is that I only need to write things once. Anyone who cares about it can choose to read my updates. There is no need for people to read every detail of my experience, but those who want to know the details can choose to read about it on my blog. I don’t have to type endless emails with the same information.

    If you aren’t typically a public person, there are private blogging options. You can create a private blog on WordPress or Blogger, where only those you invite can see it. A better choice might be Caring Bridge. Caring Bridge let’s you setup a website where you post updates but it provides a way to coordinate what you need. You give access to your friends and family and they can use that as a way to figure out how to help you. I may yet need to set this up, as I go into chemo – we may need local help with food – not sure yet as I don’t understand the implications of chemo. I usually prepare the meals – but does chemo mean that I cannot cook for Scott for the first 48-hours? I don’t know yet. It isn’t just about a desire to not cook, there is a real health concern regarding passing on the chemo drugs to your care givers.

    So when people ask me ‘should I blog?’ I first tell them to think really hard about it. How public do they want to be? How much do they like writing? Why do they want to blog? And then I offer to help – if you want to blog, I’m happy to help you get started. It is the least that I could do!

  • Why I take selfie’s

    A friend is doing a sermon on selfie’s and exploring the role of selfies under various contexts. Scott and I took selfie’s throughout out Going East journey (before everyone had Smartphones and it became trendy). We did it because it was a fun way to say “we were here” without leaving an impact on the places we visited. I would love to have included a selfie of us at Palmyra Syria, but it appears we didn’t take one. So here is one of us at the monastery at Petra, Jordan. The picture actually make the monastery look small – so I’m including a second one that has me standing right next to the monastery so you get a sense of scale.

    IMG_3949-XL IMG_3946-XL

    When we first decided to explore Stanford for treatment, it occurred to me that I wanted a series of pictures of me, taken at the same place, every time we go. I wanted a nice tree behind me, but we couldn’t easily find one near the cancer center. We will need to look a little further, as there are a bunch of giant Eucalyptus trees, which seem to be constantly shedding their bark. There is something symbolic in that, as the trees shed their bark I shall be shedding my hair.  When all this is over, I shall have a time lapsed video that shows a series of pictures of me as I progress through this process. It is both evidence and testimonial to my journey.

    Right now, I’m taking lots of pictures of myself – actually I’m having Scott take pictures of me. If I don’t make it, I want there to be lots of happy pictures of me. I also want my family and friends to see that I am doing well right now. I am strong, and I want to show it through pictures. I may need the pictures when I’m going through treatment, to remind myself where I was before this began, and where I want to come back to.

     

     

     

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