BC Becky

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

Tag: reflection

  • Changing cues

    I’ve always been highly aware of my body. I know when it needs iron, I know when it needs food, I know when it needs electrolytes. At least I used to.

    Now, I’m finding that not all my normal cues are there – so I don’t know what my body needs. I find myself tired in the morning only to realize that I haven’t eaten anything. I usually wait to eat until I feel hungry, but I’m not getting that hunger cue anymore. It is not that I’m nauseated (although that is an issue early in the chemo cycle), it is more just a loss of general appetite. My body is not signaling that I should eat. Once I start eating, I enjoy food and get more energy – I just need to remember to eat!

    So today has been a slow day. I went off to the grocery store having not eaten anything, and had little energy. When I got home, I made a point to eat, which made me feel a fair bit better. Unfortunately, I think the groceries were a little too heavy, and I lifted more than I should – such that my incision from the biopsy started bleeding a little. Rather than go out and get gas for the car, or run other errands, I opted for a nap on an ice pack – which kept getting interrupted by knocks on the door and text messages … so I shall try again … nap on an ice pack. I’m also cooking a few things up for dinner tonight and to have as food for tomorrow (chemo day).

  • Who would have thought … I look sexy in a buzz cut!

    Today was the trip to the really nice lady who volunteers to shave heads for those who are going through chemotherapy. We decided we needed a before picture – as Scott was also going to get his head shaved (in part in solidarity, but more because he needed a haircut).
    Photo Jul 17, 11 30 37 AMAs she shaved my head, I was pleasantly surprised by the result. I actually look pretty good with a buzz cut. 
    Photo Jul 17, 11 54 07 AM Photo Jul 17, 11 54 19 AM

    Afterwards, Mom and I went shopping. I started out wearing the head scarf but soon found myself feeling just fine without it. I was especially amused with the feel of the wind on my head with the windows open in the car (usually it drives me nuts to have the windows open as my hair flies everywhere). Then I discovered my shadow, which is very odd looking and still catches me by surprise.

    2014-07-17 15.12.14

    There are so many new sensations – it is amazing. Even a task as simple at putting on a t-shirt feels completely different. I’m looking forward to tomorrow mornings swim and shower!

    Now I just need to get a few nice pairs of dangly earrings (I welcome donations/gifts). I don’t normally wear earrings, but long dangly earrings suddenly help me dress up nice. I was never really big on fashion, and now I find myself buying a bunch of nice clothes so I have something fancy to wear to various appointments and meetings.

    Definitely feeling good today 🙂

  • Pondering the PhD

    (This article is cross-posted on http://rjh.goingeast.ca).

    When I was diagnosed with breast cancer, one of my first decisions was to put my PhD on hold. I had the opportunity to take a one year (maybe longer) leave of absence in the program (that is, to stop the clock). This was a pretty clear decision as my data collection was not complete, and in order to complete it, I would need to travel to Ottawa once per month over the next 6-8 months, which was no longer going to be possible.

    With the stop in my PhD data collection, my current research study is coming to an end. I have a few loose ends to tie up, but, unfortunately, I do not believe there will be enough data or enough of a study to complete a dissertation (I may get one or two journal articles out of the data).  I am proud of the current state of the first phase of the study, which resulted in the content on the website http://ipad-fm.ca and the eBook “iPadagogy: Employing the iPad as a Clinical Teaching Tool”, which is now available in the iBooks Store.

    I’m not sure what I’m going to do when I finish treatment. Treatment just began (20 weeks of chemotherapy, which will be followed by at least two surgeries that will take another 6 months for recovery).

    I am pondering my options. In an ideal world, I would go back and begin a new project. One that only takes 3-4 months in data collection, and that would allow me to then get to data analysis and writing of the dissertation. I’ve already spend three and half years doing coursework, writing comprehensive exams, and writing a research proposal. I’ve done small research projects and written and published several peer-reviewed conference papers. I just need to do a good research study that allows me to demonstrate that I can do this, and that gives me enough useful data to write a dissertation.

    Looking at going forward options, I am wondering about transferring to another university. I am wondering if there is any way in which to transfer that doesn’t requires a complete ‘restart’. I’m not particularly interested in going back to do two more years of coursework. I’m OK with repeating some stuff, but I’d like a streamlined process. If I’m studying in Canada (or the US I think), I may still be able to access the last two semesters of my SSHRC Doctoral Fellowship – so I even bring with me some funding although not enough to finish the degree. I live in California, and now for medical reasons, a relocation within the next 3-5 years would be complicated and is not really something I’d consider. I’d like to be able to complete my PhD (or EdD for that matter) at a distance – and I’d like to look at some aspect of distance education, the use of new technologies, and faculty development. I also have developed a side interest in medical education – so if there is any cross section of distance education, new technologies, faculty development, and medical education that would be even more interesting – although the medical education aspect is not essential (I’m not an MD).

    Today I came across Terry Anderson’s post on “Online Distance Education – Towards a Research Agenda“. My particular areas of interest are identified as:

    • The Use of Technology in distance education
    • The Cost and Economics of Distance Education (although I’d need to do a lot more reading in this area before I could study it).
    • Professional development and faculty support

    Actually, I find it interesting that the topics that most interest me all fall within the area categorization of “Meso-level research: Management, Organization, and Technology”.

    So, I shall ask anyone reading my blog – any suggestions for Doctorate programs that might allow someone with special circumstances such as mine to transfer in?  I’m not 100% certain that this is what I will want do when I’m done treatment, but I do want to explore the options so I know what is feasible / realistic. Thanks.

  • Meltdown

    Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

    I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

    I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

    I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

    I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part.  I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

    So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

    Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

     

  • The Colour Pink and a memorial celebration

    I find the reaction to the colour pink interesting. You see, I’ve always liked wearing pink, but not breast cancer pink (or as my reiki healer today called it Pepto Bismol pink). Since my diagnosis, I find it interesting the different reactions other people have to the colour pink. Mostly, it is a complete aversion to the colour. So, I thought I’d announced, I’m not against pink, just please not Pepto Bismol pink). I really like dark deep pinks (as well as greens and blues).

    This morning I was thinking of the memorial post that I made to Puffie – on our Going East bike trip, we had a bag stolen. Of all the things in the bag, the one loss that I felt was that of our mascot Puffie – a stuffed Labrador puffin that we bought a the L’Anse Amour lighthouse. It got me thinking of memorials, and how they help deal with loss.

    I found myself wondering about (and craving) a memorial for my breasts. I wondered what others had done or if my thought of creating some kind of memoir was a totally crazy idea? I asked on a couple of breast cancer social media groups that I’m part of. I received a variety of suggestions for parties with catchy names (boob voyage) that all seemed to involved booby cakes and lots of alcohol (made me miss my girlfriends back in Ottawa). They were more in line with they’ve had a good life celebration before they are sent off.

    The response that really struck me was a truly heart felt post from a fellow blogger who is probably about my age, who created an art piece the night before her mastectomy. I really feel for women have children, whose emotional ties to their breasts relate directly to feeding their children as infants. I cannot say that I have that same bond, but I still feel a need somehow to do something before they are gone. Maybe its just something trivial like swimming topless in Hawaii (not sure its legal, but I’m sure an exception could be made) … I now have visions of a photo shoot. Scott with the new Go Pro camera, taking pictures of me swimming topless with the sea turtles and snorkeling around the amazing corral reefs in Maui. Maybe we will even charter a sailboat to take us to a nice spot, not full of tourists. A place to say a last goodbye. Sounds like heaven.

     

  • 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!

  • Breast surgery

    I am coming to appreciate the roles of the different surgeons. I have not yet met with a plastic surgeon (PS), but will probably set that appointment up in the next few weeks just to get the conversation started. With breast cancer in the US, you are usually dealing with at least two surgeries. The first surgery is done by the breast surgeon (BS). This surgeon specializes in removing the cancer. You can have either a mastectomy (where they remove the entire breast) or a lumpectomy (where they just remove the cancer). That is an overly simplified explanation – as both surgeries depend on what you plan to do after – that is the reconstruction or no reconstruction. The two surgeons work together to help give you the look you want post-surgery. Some of the choices your breast surgeon makes depends directly on what you want the final outcome to be.

    So, it occurs to me after looking at several pictures of not too nice results post mastectomy/lumpectomy surgery, that I want a plastic surgeon that has experience doing trans female-male top surgery. You see, if the plastic surgeon knows how to do trans surgery well, then they would appreciate the importance of appearance. And if they have experience with female-male trans surgery then they would get what it means to be flat. I’m surprise to realize that appearance matters to me. I want to look good naked … I’m OK with being flat – not having breasts – so I don’t think reconstruction makes sense for me (at least that is my current thinking) – but I do want to look good naked. I want to be able to look at myself in the mirror and be proud of what I see (rather than sad). I’ve been warned never to look down … the downward view of your breasts is the view the only you see, and it will never be the same … everyone else sees the outward view!

    One thing that I find very interesting in this process is that I have a greatly improved body image. I would not have expected that result. I’m a lot less vain now – and a lot less worried about my other lumps and bumps – but I do want to be able to go topless. I don’t want to have to feel like I need to cover up because I have odd disfigured lumps and bumps where my breasts used to be.

    I’m reminded of my early days when one breast started growing before the other (midway through grade six if I recall correctly). I found myself wearing training bras because I did not want to look lopsided – I always used one of the stalls to change in PE class, cause I didn’t want the other girls to notice that I was lopsided. Now, I find myself wanting to be the poster child for women with mastectomy who choose not to reconstruct – I want to model swim suits for real women. A few months ago, I supported a Kickstarter campaign for Nettle’s Tale swimwear. I bought a swimsuit but never got around to sending them my sizing information (couldn’t find the measuring tape in my Ottawa apartment). After diagnose I reached out to the folks at Nettles Tale as I cannot give measurements now and I’m also not sure whether the suit I picked will work!  I threw out the idea to the folks at Nettle’s Tale swimwear of modeling for them as they are hoping to come out with a new line of swimsuits that support prosthetic boobs. They were excited about the idea, but of course nothing is planned yet (I don’t live in Vancouver, which poses a challenge, but also it will be a year before I’d be ready anyways) – but I thought I’d share that I am serious when I say that I want to be a swimsuit model when this is all done!

    I learned a new word the other day – foobs – which is short for fake boobs. I had heard falsies before, but foobs was new to me. Today I learned that the best place to buy a variety of foobs is eBay. Buying new can be rather expensive (eventually I’ll need to see what my insurance will cover). Since both the breast cancer and the trans community use them, there is a market for lightly used foobs. You learn something new every day!

  • Nature has more beauty

    Someone in one of my networks commented that after diagnosis, nature has more beauty. That suddenly you are more aware of the beauty that surrounds you. I’ve definitely noticed that when I go out riding or walking. I’m finding the bike path behind our place particularly beautiful these days.

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    Today, rather than riding (it was a hot day here), we waited until it started to cool off and went for a nice long walk (dug out the pedometer – 7500 steps). When we ride up on the path we noticed a natural area between the path and the street. Today we walked through that area. Many of the plants are labelled and there are several information plaques throughout. Apparently, it is the last “forest” area in Santa Clara. Santa Clara is bordered by the San Francisco Bay in the north and cities on all other sides (Milpitas, San Jose, Sunnyvale, Cupertino, Campbell, etc).

    We came across a grove of old eucalyptus trees. In this photo you can see the different phases of their life cycle – shedding layers of old bark to allow the new growth. Every time I see this I think, that is soon to be me, shedding my hair, nails, and other fast growing body parts (and tumors), to allow for new healthy growth. I am very curious what colour my new hair will be!

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    Walking back along the path, with heightened senses I noticed a family of snails on the shrubs that bordered the path. After noticing the first bunch, we realized that there were families of snails on the shrubs all along the path. We have walked this path several times and never noticed them before. Of course, my heightened senses might also be attributable to my new glasses, that let me actually see clearly at that distance – but still – I’m sure there is also an aspect of the cancer that I can attribute to this perception.

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  • 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.

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