BC Becky

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

Year: 2015

  • Trying to get unstuck

    I’m feeling rather stuck lately. This is not being helped by my network, we seems to be posting things that are depressing rather than up lifting. I haven’t written much on this blog lately because I don’t want to contribute more to the depressing nature of the posts that going around on my cancer network. I want to help change the tone to help be more up lifting, but I’m just not feeling up to that.

    One of the decision I made on vacation was that I wanted to focus more of my time on writing. I want to write a couple of books. That is in part why I was focusing on writing more about our vacation. I wanted to practice that genre of writing (adventure travel writing), which is quite different than the writing I do here, and the writing I do on my academic blog.

    Last week, I created a blog post per day about our vacation to the Eastern Sierra’s. I wanted to write about all the wonderful hikes we went on. I wanted to remember the fun parts of the vacation, in part because it didn’t end well. I got stuck on day 7. Not because day 7 was bad, but because I chose to relax on Day 7. I didn’t go on a hike that day, rather, I lazed around in the hammock and read. After five days of hiking, I needed the break, but also, I wanted to give hubby the opportunity to go on a more rigorous hike then I was physically able to go on. I didn’t want to be holding him back. I’d say that this was another one of those losses from cancer, but it isn’t really. Even before cancer hubby was always more of a hiker than I. So, it would have been pretty normal for me to take a day off while he hiked.  And as you can see, I was comfortable in he hammock!
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    My plan was to go on a nice hike on day 8, but the weather gods didn’t agree with that plan. I got stuck on day 7, and need to just get past that stuckness. I need to learn to just write even when that writing is a more difficult.

    Day 8 was really the end of our vacation. We came home  a day early. It got to a point where I was no longer having fun. I wanted to just be home, back in my bed. Back to familiar comforts.

    I find that interesting too. I used to love travelling. I used to want to spend time away. Now, I find travel to be exhausting. I do enjoy it, but I also find it stressful and tiring. I find that I miss the routines that I have at home. I find that I just want to be back into those routines. This scares me. I feel like I’m prematurely aging. Like I’m becoming someone who doesn’t want to adventure anymore.

    I’m so thankful that we did our Going East bike tour while we were young and relatively healthy. I cannot imagine doing that type of trip now. It would be so complicated – I’m having a hard enough time managing my pills for a 10-day trip (my pill organizer only has space for a week). I cannot imagine how to manage the pills for a longer trip.

    I’m writing this post in part to help me get unstuck. To get the creative juices flowing again, so I can get back into the routine of daily writing. And with that, it is time that I go and write about vacation day 7 … coming soon …

  • Introductions (or not)

    This post was originally posted on my other blog, but I thought people who read this one might also find it interesting…

    The first activity in #clmooc is to create an un-introduction – or really a re-introduction – that is to introduce yourself in a different way. A way that involves making and remixing.

    At the moment, introductions are one of the hardest things I do. I have no clue even where to start …

    Hello, my name is … 

    Hello, I’m Rebecca Hogue …

    Hello, I’m Becky …

    The name says something about me. You see, I use Rebecca professionally. I use Becky with my close friends, my church community, and the breast cancer community. When I attended the et4online conference, I discovered that what people called me became a cue – If they called me Becky, I knew that they knew my breast cancer story. If they called me Rebecca, then likely not. An interesting side note, I found it very uncomfortable being called Becky by my healthcare team. It took me a while to realize that I saw that as a patient safety issue.

    I’m … 

    a writer

    a blogger

    a PhD student

    a part-time professor

    an instructional designer

    an education technologist

    an eBook producer

    a researcher

    a breast cancer warrior

    a breast cancer survivor

    an ePatient

    ….

    And the list goes on. I’m not one thing. I’m many thing. And yet in some ways I’m none of them. I’ve been trying to figure out how to introduce myself, and have yet to find something that really works.

    On vacation last week, I decided I wanted to focus more on writing. I wanted to identify not just as a blogger, but also as a writer. That I wanted to really focus on writing one of the several books I keep talking about writing. And so, when the lone gentleman in the next campsite came over to visit around our campfire, I introduced myself as a writer. His first question was What have you written? Would I know it? What genre do your write? This outlines one of the challenges when you are trying to figure out who you are, and who you want to be. The minute you try to be that person, you need to be able to be that person!

    This has become a real challenge with the Google Hangouts that Maha and I do as part of our Virtually Connecting project. You see, she starts off with “Hi, I’m Maha Bali. I’m a professor of practice at the American University in Cairo, Egypt”. When I haven’t come up with anything wittier, I usually respond with “I’m Rebecca Hogue from sunny Santa Clara California”. You’ll note that I don’t actually say what I do. I do, however, talk about the weather a lot. That is the Canadian in me. Canadians are obsessed with the weather. In this part of California, conversations about the weather get kinda boring pretty quickly.

    Anyways, I thought I’d finish this off with a little clip of me introducing myself over the last two years. It begins as me back in January 2012, January 2014, February 2015, April 2015, and finally ends in May 2015.

  • Struggling to exercise

    I’m struggling to overcome inertia and get back into exercising. I find it easy to make excuses – or to delay just getting out there – or feel that I don’t have enough time to go for a bike ride. In some ways it was easier during chemo. There were no expectations on my time. The entire focus of my day was to exercise. If I managed anything else, that was a bonus.

    So now I’m struggling. I’m trying to do a bunch of stuff. I’m trying to find a balance. And my days are still quite full of doctors appointments – which turns into yet one more excuse to not get out and exercise.

    And so, I’ve decided to re-instate my “What’s your Exercise today” Facebook support group. I will ask the exercise question three days per week (Monday – Wednesday, Thursday/Friday, and Saturday/Sunday). My goal is to have at least two different types of exercise in each timeframe. Since I currently bike, swim, walk/hike, go to the gym – I have options. I just need to push myself to get out and do them.

    So, now that I’ve delayed yet again, I’m going to change and hop on my bike!

    If you are interested in joining Becky’s Exercise challenge, you can sign up on Facebook here – https://www.facebook.com/groups/RJHexerciseTeam/

  • Permission to be selfish, saying no, and looking to the future

    Crossing my stream this morning was a post by Cancer Curmudgeon about her post-cancer Mean Streak.  I read it and I thought, what has cancer changed in me? I’ve thought a lot about this lately.

    There are three things that come to my mind: (1) I’m more selfish, (2) It’s easier to say no, and (3) I have a shortsighted view of the future.

    First, I often feel that I’m being selfish. When I was going through active treatment, it was easy to give myself permission to be selfish. I often tell other women who are in treatment that they are allowed to be selfish – this message is especially important to mothers who tend to be constantly giving to their children such that they themselves do not get taken care of. During active treatment, it is important to let people take care of you. However, I’m past that. I’m in active recovery now. I still find that I am selfish. That is something that has changed in me. I’m empathetic to others, but I’m also aware of when it becomes a drain on me, and I shut that drain down. It is a defense mechanism that I need.

    I am also finding it easier to say no. You would not get that by how much I’m doing. I still suffer from FOMO (Fear Of Missing Out). I end up signing up for too many things because I don’t want to be missing out on things – but on the other hand, if it is something I don’t really want to do, saying no is a whole lot easier than it used to be. My energy is still limited, it is finite, and so sometimes I just need to say no.

    Unlike Cancer Curmudgeon, my priorities are clearer. This also makes it easier for me to say no. I’m still totally lost as to where I want to go next. My view of the future is very shortsighted. During active treatment my worldview/future view was to the next step in treatment. During active recovery my worldview/future view is to my next trip. I’m traveling for both vacation and to attend academic conferences – which is about the closest thing to ‘work’ travel that I do. I enjoy both, but both are also exhausting. My future view only goes so far as the next 3-4 months. I cannot yet think of my future beyond that point. I don’t know how well I will be. I don’t know how recovered I will be. I cannot think of plan much beyond that window right now. Perhaps this is one area where I’ll know I’m out of active recovery. That is, when I can think if my future beyond the next 3-4 months, then I know I will have recovered – whatever that means!

     

  • Numbness and pain …

    I’ve noticed that lately I’m a lot more aware of these appendages on my chest, which have no feeling, and my surgeons continue to remind me “are not breasts” even though they look an awful lot like breasts, and when you touch them, they kinda feel like breasts. But alas, they are not breasts, in that they do not have any of the fatty breast tissue in them. That was all taken away when I had a double-mastectomy to remove the last bits of cancer in my system – December 17, 2014. Although I don’t remember much of that day (I was wheeled into the operating room at 8am), I shall never forget it.

    Lately, I seem to be much more aware of the numbness in my fake breasts. I’m particularly aware of the area where my new breasts brush up against my upper arms. My upper arms can feel that something is there, but the breasts don’t feel the upper arms. So it all just feels kinda wrong. I actually caught myself bumping into a cupboard in the kitchen today – the cupboard door made contact with my breast, so I didn’t feel it.

    I’m also numb in a large portion of the front of my stomach – where the donor tissue was taken. I have a scar that goes from one hip bone to the other. I can feel the outside 2 or 3 inches of the scar – the part that is actually over my hipbone, but I cannot feel the middle of my belly. In some ways, I’m feeling like I’m loose more feeling rather than gaining it. That more of me is numb now than it used to be. I’m also starting to feel some pain along the incision in my belly. I’m particularly aware of it on the part of my stomach between my new belly button (which is pretty cute BTW) and my stomach incision. The pain comes and goes – and it is not bad pain – in that I don’t need to take any meds to block it – it is an awareness pain. I find that rubbing my belly helps – perhaps it is a way to help the brain make the connection between the new nerves and the physical location of the sensation. I don’t know, I just know that when I get that feeling along my belly, it is eased by rubbing.

    I’ve also had a couple of times where I’ve had an itch on my not-breasts. This is really difficult to manage. The itch feels like it is coming from the skin on the breasts, but I don’t have any sensation there – which means that scratching it does nothing. It is horribly frustrating – it is an itch that cannot be scratched.

    One of the times when I am most aware of the numbness is when I go for a swim. I find myself hesitating going out to the pool – in part because it just feels really weird. I am thankful for my reconstruction surgery – such that I can wear the same swimsuit I wore before my mastectomy, and I don’t need to worry about prosthetics. I’m afraid that prosthetics would have been one too many sources of inertia that I’d never actually get to the pool. As it is, I can spend a good hour between the time I decide I’m going for a swim and the time I actually get my swimsuit on and walk out to the pool (thankful that I don’t actually have to go any further to swim or I’d never actually get there).

    So tonight, with my ankles unhappy with me, I was happy to hop in the pool (rather than biking or walking). It was weird walking in. There were kids playing in the pool, so I tried to walk in (one hand on the railing so as not to lose my balance) without making funny faces as various parts of my body first get exposed to the cool water (the pool was pretty warm tonight, which made it easier). I recall from before, that stepping into the pool involved a shock at the belly line and again at the booby line – that is, when the water first approaches the belly and the breasts respectively. I no longer get that shock – the impact of the cool water on my belly and breasts just isn’t there. If the water is cold, I will eventually feel the coolness in my bones/flesh – but I don’t have that direct cold sensation on my belly or breast skin.

    One thing that being in the pool does, is it helps me figure out what I’m feeling and what I’m not feeling. I recall when I first started to get neuropathy, that I found swimming to be an odd sensation. Climbing into the pool highlighted that I couldn’t feel the water on my skin. I could feel the coolness of the water, but I couldn’t feel the actual water. Similar to how rubbing my belly when it hurts helps my brain figure out where those new nerves physically are – hopping in the pool helps me appreciate the boundaries of my numbness.

     

  • A year ago today …

    A year ago today, I went to see my primary care (family) doctor about a hard spot on my left breast just below the clavicle. I was sure it was nothing and that I was just over reacting, but figured that it was worth a visit to the doctor just to be sure. I didn’t know then that most breast cancers are not hereditary. That the majority of women diagnosed with breast cancer do not have a relative that has experience it. Cancer wasn’t something that was common in my family. I was more worried about heart disease, stroke or dementia. The thought of breast cancer never really crossed my mind.

    So I told my primary care doc that I just wanted to have her check this out. I had not yet mentioned it to Scott. It was just something I had noticed the week before, and it didn’t quite feel like a muscle strain, but I figured that was what it was.

    As she systematically examined my right breast first, and then the left breast she paused.

    The look in her eye was telling. She asked Is this what you are feeling? 

    Yes.

    She examined it more detail. I now appreciate that she was feeling for the size of it. She told me that the next step was to do some diagnostic imaging. She said ultrasound and then mammogram (turns out they do it in the other order). She placed the order.

    I went downstairs to the area where I could make an appointment for mammogram and ultrasound. I didn’t want to wait for them to call me. It was Monday morning. The earliest appointment I could get was Thursday afternoon.

    I went home. Unable to focus on much, I decided to go on a long bike ride. I hopped on my bent and headed north. I ended up out near Shoreline and Scott’s office, right about the end of the day. I texted to see if he wanted to ride home with me (he had biked into work that day). He said sure, so I rode out to his office.

    He came out with a couple of his colleagues who wanted to check out the bike. Since my recumbent is easier to let others ride than his (I have pedals that work better with street shoes). One of his colleagues gave it a try.

    The delay was difficult. How do you tell your husband that you found a lump in your breast and your doctor is concerned? That is not easy. There is no right time. I knew I had to say something but didn’t want to say it in front of his colleagues. So, as we were pulling out of the parking lot at his office, both on our bikes, I blurted out to him:

    I found a lump in my breast. [Family doc] is concerned. I have follow up imaging on Thursday afternoon so I’ll need the car.

    He had the bike ride home (about 30 minutes) to process the information. We didn’t know anything yet. It still could be nothing. There was no point in getting worried if it was nothing.

    At dinner that night he told me that I could have told him about the lump sooner. That I didn’t need to hide that information. That he would be there for me. That whatever it was, he would be there for me.

    People often say that the not knowing time is the worst time. That time before you are definitively diagnosed, when you don’t know if your whole world is about to be turned upside-down or it is nothing. Looking back a year later, I’m not so sure I would agree. I’m pretty sure I’ve gone through some worse times. I was healthy back then. Feeling stronger than I had ever felt in my life.

    That day, I resolved that until I knew for certain what was happening (I still didn’t really think it could be cancer), I would concentrate on getting stronger. I figured that if it was indeed cancer, then the stronger I could be going into it, the better off I’d be. Since I wasn’t really able to concentrate on work anyways, it made more sense for me to concentrate on bike rides and swimming. Exercise became my priority, but also my outlet. It was my coping mechanism. It kept me sane. It still does!

     

     

     

  • Who am I?

    When meeting new people, I’m often asked What do you do? For the last three years I’ve been able to say that I’m a PhD Student. I’ve been able to say that I’m a scholar. But now I’m struggling with that identity. I’m struggling with who I am.

    The last time someone asked What do you do?  I answered that I’m a writer. I’ve been a writer before – but before I was a technical writer. Professionally I was both a technical writer and an instructional designer. But I don’t feel like that is where I’m at today. My PhD studies have made me more of a researcher, an innovator, and a writer. I’m now more familiar with writing in different genres – and I have more to learn on that front.

    For now, I no longer identify as a PhD Student. I have put my studies on hold for another year. I need to figure out what I want to do for a research project, and I’m just not ready to jump through all the hoops that are needed to complete the PhD process. Not yet anyways. Maybe in January, or May, or September 2016. We’ll see.

    For now, I am going to identify as a writer, and perhaps as an innovator. When asked what I write, so far it has mostly been blogs, and academic articles. I think I may finally be ready to start writing the Going East books. I have in my mind a series of eBooks, that combines my lived experience on the bike trip with research – sharing a little more of the story around the places we visited – as well as the 1000s of pictures we took. For the most part on our Going East trip, we were not tourist, we were travellers. We spent time in places, met people, got a sense of the feel for where we were visiting. I think our stories around our time in Syria are especially important to tell. I think my PhD studies have better prepared me to write the Going East stories …

    Before starting the PhD I did NaNoWriMo (National Novel Writing Month) – In November every year, writers from around the world commit to writing 50,000 words in one month. I did NaNoWriMo the November before I started my PhD studies (November 2010). The focus is on writing, rather than on quality – as such academics have tried to model NaNoWriMo with AcWriMo (Academic Writing Month), but that has proven to be challenge – as word count doesn’t make as much sense in academic writier – as often it can take all day to write a paragraph because of the need to research while writing. Plus, in the academic world, verboseness is not treasured, rather writing well concisely matters. Anyways, this year, I shall need to think of what I want my November writing project to be. Perhaps, I will work towards one or two of the Going East books during NaNoWriMo.

    It is interesting how time in nature helps me figure a few things out … I’m sitting at a campsite writing this out. Things are looking a little clearer for me right now. I clearly needed to spend some more time out in nature enjoying the ancient trees.

     

  • Tenacity – or Lack There Of?

    I used to see myself as someone with lots of tenacity. It is what got me through tough days on our Going East bike tour, but also the tough days during chemo. I walk through the queasiness and neuropathy pain. I exercised every day!

    Now that I’m no longer in active treatment, I’m finding it more difficult to call upon my tenacity. It is a daily struggle. I do find it easier when I’m with someone. Hiking with my hubby while on vacation, I find myself hiking longer trails at higher elevations than I thought I could, but still, I am comparing myself to before and finding myself wholly inadequate. I don’t want to feel pain when I hike. I don’t want to be limited by how much my feet hurt.

    I find myself looking back and wondering where I found the strength before? What was inside me that allowed me to call upon my tenacity and perseverance to get through it all? How can I find that again and get that back?

  • I had planned to write

    I had all these great plans about what blog post I would write as I approach the one year mark … I was going to count how many doctors appointments I’ve had in the last year, but when I looked at the calendar for last June I almost lost it. I just could not go back there and analyze it, as if the data held no meaning, or emotion.

    On June 1st last year, after a long bike ride around the Alviso, as I showered I noticed a hard spot on my left breast. I thought I’d pulled a muscle in my peck. I waited a week, and when it didn’t go away I went to see my family doctor. A few days after that – June 12, 2014 – the radiologist told me I had breast cancer.

    I had planned on looking back at my accomplishments over the last year. I wanted to write a post that celebrated some of those accomplishments. Despite chemotherapy (4 AC, 9 Paclitaxol) and three surgeries, I still managed to co-author at least two papers, present a poster at a conference, attend a conference, write 320 posts for this blog, write 60ish posts on my academic blog (http://rjh.goingeast.ca), create on free open online course (http://shouldiblog.org), with my buddy Maha – launch http://virtuallyconnecting.org, walk 274km, cycle 1091 km, and hike 90km. Unfortunately, I didn’t track my swimming.

    I expect that the next couple of weeks will be tough – but I’m running away from it all. For the next 10 days, the days will be days, but they won’t be dates. I’ll be off camping in the Eastern Sierra-Nevada – mostly out of cell phone / data range. I’m hoping to breath in some mountain air and just experience life. Sorry, don’t expect to be writing much while I’m away. I’m taking a vacation from it all. We’ll see how well that works!

     

     

  • Comparisons

    I’ve come across friends’ posts in both my cancer world and my non-cancer world were people are comparing themselves to others in such a way that makes them feel less of themselves.

    The first was in a cancer post. Someone who had a smaller cancer, which had not spread, such that treatment didn’t need chemotherapy. She was comparing herself to others within the community who had much more advanced forms of breast cancer. That comparison made her feel like her experiences were not significant. However, a bunch of us jumped in to let her know that her feelings were real, her concerns were real, and her experience sucked too. There is no value in comparing because you’ll always find someone who is worse off, that doesn’t make your experiences or feelings any less valid.

    This also happens frequently within the cycling community. Riding 40 km is a huge accomplishment, especially for those who don’t normally bike. But for those who are cycle tourist and are accustomed to 100+km ride days, 40 km feels like nothing. It is no less of an accomplishment for the person who rode 40 km for the first time. Oh how I am looking forward to being able to break the 20km boundary again, and some day, I too shall be able to ride 40km, and maybe even 60km.

    My point is, we have this nasty habit of comparing ourselves to others, which we use to devalue our own experiences. If you catch yourself doing it, remind yourself, that your experiences are real, your experiences are valid, and your accomplishments are significant!

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