BC Becky

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

Category: recovery

  • Cues and context

    At the conference last month in Texas, my cue was the name. If someone called me Becky, I knew that they had read at least part of this blog – if they called me Rebecca they knew me in a more professional context. Calling me Becky signalled that the person knew at least part of my story. They had context. I thought I blogged about how the name was a signal for me – but I cannot seem to find it on either blog, so I may not have actually written it.

    Over last weekend in Ottawa, I attended part of the Canadian Unitarian Council’s Annual Conference and Meeting. Many people there knew my story. Since I go by Becky with my church friends, the name was not a signal. Instead the signal was my hair. If someone said, “wow you have lots of hair” usually following by a deep heartfelt hug, then I knew they knew my story. A funny aside, someone commented that it was no longer socially acceptable to rub my head, which made me giggle. If they said “you cut your hair” then it was clear that they did not know. This happened a few times. At least once, when someone asked me how things were going in California, I said that “I had some health issues”. I told others “I had breast cancer”. I found myself playing with different ways of approaching the topic, but for the most part, I just accepted heartfelt hugs and smiled. I certainly did not go under hugged on this trip.

    One of the biggest challenges for me on this trip is the sense that I people are “happy to see me well” and “glad to see that I’m strong”. The problem is that I don’t feel that well or that strong. I found that I was surrounding myself with visits, but at the same time I exhausted myself. I had to remind myself that I’m still recovering, that I’m not there yet. It doesn’t help that my neuropathy in my feet is acting up, as is some tendonitis in my shoulder. So my body is providing a constant reminder to me that I need to take more time to heal. I need to rebuild my strength. It isn’t something that comes back overnight – just because treatment is over, doesn’t mean that I’m magically better, magically stronger. These things take time, and I need to remember to give myself that time.

    I’ve been gone for a week, and as Spirit of the West is apt to say, “I need home for a rest, take me home…”

     

  • A picture is worth 1000 words

    A picture is worth 1000 words … or so they say.

    I recently participated in an interview for an academic study on care and vulnerability among academics. When asked about where I draw the line with what I share, two things came to mind. First was in areas around sexuality, and second was with pictures of my breasts. I’ve struggled with both, in part because I think there are things that need to be said, and would be valuable for others going through breast cancer to hear – but there are still limits to what even I am willing to share publicly on the internet.

    That being said, a friend is about to go through the same kind of reconstruction surgery that I went through. When we talked about it, I was able to show her some photos that were on my phone. These were a great help to her. She was comforted by my success stories, as most of what she had seen were the horror stories.

    When I was at the ed tech conference in Texas a couple weeks ago, there were a few people that I showed pictures to. Again, this was in part to help them better understand what was involved. It was a sharing that helped to deepen our relationship.

    I have struggled with how I could share pictures in a way that was not so public as this site, but would allow me to still share them with people who want to see them. I thought about putting them into an ebook behind a paywall – so only those who paid for them would see them, but that didn’t really seem to address my concern. Part of it is, I want to know who has seen them. Even if the person is a complete stranger, I still want to know who they are. It is because the sharing of such pictures is sharing an intimacy (note that the pictures do not involve face or groin (except one or two) – that is intentional. They show the scars and the wounds in a more objective manner. They help the viewer better appreciate what the surgeries entailed. They help the viewers better prepare (or empathize). But they also serve to deepen the relationship between me and the person viewing the images.

    With that said, if you are reading my blog for whatever reason, and you do want to see the pictures of my wounds (photos taken almost daily from my first surgery through to mostly healing of my scars), then please email me (rhogue@pobox.com). I will not post a link here. I will not post the password here. I will, however, share with those who read this blog and want to know me on a deeper level – or who want to better understand the outcomes of the surgery that I had. Just send me a note to let me know a little something about you, so that I know I’m not sharing my photos with someone who will publicly display them or exploit them in any way. Because, sometimes a picture (or in this case a series of pictures) is worth more than 1000 words.

  • Doing well – mentally

    I haven’t been writing as much on this blog lately. In part, that is because I’ve been feeling well, and in part because I’ve had this particular post in my head for a few days but I wanted to wait until after this weeks doctors appointments before writing it. I was reflecting today on how I don’t do a good job of writing about things when they are going well. It is so much easier to find things to say when you are struggling, but as things start to get back to normal and go well, I wonder what I should be talking about?

    Something really clicked for me a few weeks ago. It was almost like a huge weight was lifted off my shoulders. I’ve been doing some cognitive behavior therapy that has really helped. I’ve learned to internalize the idea that I can change the way I feel by changing the way I think. More to the point, that once I recognize that my thinking is going down a negative path, I can re-program my brain to stop doing that. What has been cool about this, is that it has not only reduced my stress about cancer recurrence, it has also helped me cope with impostor syndrome when I’m in an academic setting. I’m finding ways to use the cognitive behavior therapy in areas of my life that go well beyond breast cancer treatment.

    Part of dealing with the fear of recurrence is that I needed to develop a deeper understanding of what I fear the most – metastatic disease. More to that point, I needed to understand what a metastatic diagnosis might mean to me.  How would it change my life? At some point, I realized that other than logistics issues, it wouldn’t. I would still want to be doing the things I’m doing. I’d still want to go to academic conferences and write academic papers and collaborate with some really cool people. Heck, at the conference last week I actually had fun!

    I also realized that the worry about recurrence was not serving a positive purpose. Before my diagnosis, the worry that I had about breast cancer was minimal – however, I still checked my breasts every time I got in the shower. It was part of my normal routine – soap up and examine for changes. It was during that time that I discovered the hard area, and then the change in discharge. So, it was a week later than I saw myself in my primary care doctors office, and later that week the radiologist told me I had cancer. My point is, that I had only a low level of worry, and that low level was enough for me to be diligent and to find the cancer quickly. Adding more worry would not have changed my outcome. So, that same logic is sinking in regarding recurrence. At first, I thought every pain was a recurrence. I was constantly worried about it. Now, that worry has lifted. I’ve managed to replace it with the idea that I’m going to go ahead and live my life, cancer be damned!

    It has been freeing to let go of the worry. I’ve gone back to some of my contract work, and I’m making progress on it. I have a to do list a mile long, but I’m making slow progress on it. I’m also regularly asking myself is this what I want to be doing with my time? Is this how I want to be living my life?

    Now don’t get me wrong, I’m still struggling physically. I’m still wanting to be doing more things than my body will currently allow. But I’m also having fun collaborating with people from around the world. Next week I’ll be in Ottawa visiting so many of my friends that I have missed this last year. I’m doing exactly what I want to be doing, and that is a blessing.

  • When I swim now …

    When I swim now, I am reminded about a conversation I had at lunch last week. Once a month I go out to lunch with an ever changing group of women who are typically in the post-treatment phase of breast cancer.

    One of the conversation over lunch involved me mentioning that I went swimming for the first time since surgery. One of the women asked about swimsuits and prothesis. That added complication had not occurred to me – or at least it had not recently – I recall thinking about it but not worrying about it because I would be symmetrical regardless of whether or not I had reconstruction. Now, I am thankful for not having to worry about how I would manage prothesis in a swimsuit. Fortunately, there were other women at the table that could provide advice on where to go to buy a swimsuit that supports prothesis as well as where to get a prothesis that you can use in the pool.

    So now, every time I step into the pool I am grateful that I do not need to worry about prosthetic breasts. I also, no longer, really care about how I look. I’m there, in the pool, swimming again, and it feels wonderful.

  • Being in the present

    This weekend we are camping at Pfeiffer Big Sur State Park. I made the reservations months ago, only able to guess as to whether or not I’d be well enough to camp. Our camping spot is beautiful but I must say that Big Basin has spoiled us. We are in a grove of redwoods and although they are giant ancient trees they are not as giant or ancient as Big Basin. The park itself is actually named after the Big Sur River which flows though the park and is just across the street from our campground. The Coastal Mountains here are bigger than the Santa Cruz range up by where we live, so the river gets more water from the coastal fog. Things here are still pretty green and moist, were things at home have started to dry up.

    After a night of camping I’m doing pretty good. My biggest physical challenge is sitting up from my sleeping bag. Since I’m on the ground the roll out of bed technique doesn’t work.  When I do yoga on the floor at home, I hook my arms under my thigh and use my butt as a pivot point and gravity to swing up into a seated position.  That doesn’t work too well when your legs are in a sleeping bag.  Instead, I am forced to use my very weak abdominal muscles to get up. In the end, this is probably a good thing as it helps to strengthen them. It is just one more physical effort for the day that I didn’t expect.

    After my late night trip to the loo, I spotted something moving along the trail back to our campsite. Fortunately, I have a good headlap, so I did a quick search out of the area. Rather than what I expected (racoons), it was a skunk. There was no smell to warn of its presence here. I choose to walk the long way back to the tent!

     

    After a second night in the tent I’m exhausted and my back aches. The physical effort to turn from one side to the other while in a sleeping bag is non-trivial. Again, this means that sleep means exercise. I awoke this morning to a grey sky, which echoes kind of how I’m feeling. The cloud bank is about 100 feet up, so things are not damp on the ground (yay).

    The birds are chirping and squawking, and the river is still flowing – which means the sounds I hear are mostly of nature with the occasional child crying as they wake in their tents. Taking deep breaths helps to remind me of where I am and to be in the present. It is beautiful here – and smells of nature (old trees and moss). Now that I am up and moving around a bit my back ache subsides. Mental note for next time, I need to remember to stretch before climbing into the tent.

    I am briefly visited by a blue jay type bird – not a blue jay. Up at Big Basin they are considered pests. They are not timid and will eat right off your table. There they also eat the eggs of another endangered bird that nests in the area. There is no mention of “crumb clean” camping here, and just like us, the birds are welcome visitors to the campground.

    Our plan is to spend two weeks in June mostly camping in Northern California. If I’m not stronger by then, I foresee a couple of nights in either tent cabins or hotels just to give my core a break.  I never thought camping was so much physical work!

  • Swimming & Flashbacks

    I’m happy to report that after a few days off of exercising, and some physical therapy, I’m doing much better in the pool. Today I was able to swim six laps (240 meters). It isn’t nearly as much as I was able to swim before surgery, but at least it was something. The first time I went in the pool, I was only able to swim two laps, and I wasn’t able to do breast stroke at all. Today, I was able to do two laps breath stoke, and four front crawl. The progress is apt to be slow, but at least it is progress.

    One thing I notice in the pool is that I have a very different center of gravity. I float differently – actually I float flatter than I used to. It may sound funny, but I think my new boobs (noobs) are more buoyant than my old ones were.  This results in my upper body being a little more floaty than I’m used to. My stomach is a little less buoyant (afterall that is where the fat in my noobs came from). At the moment, I’m still carrying a bunch of chemo weight in my thighs, so that is balancing me out when I swim. I haven’t yet tried to float on my back to see how that works. I’ll give that a try next time I’m in the pool.

    Now that my Texas trip is over, I’m preparing for my trip to Ottawa and Vancouver. Although the anniversary of those words “you have cancer” isn’t until June 12, I am finding that I’m starting to experience some of the flashbacks associated with a major life change. I remember first experiencing these flashbacks on our bike trip – as it was coming to an end I would get visual images of various places we travelled to. It was usually pleasant to re-experience distant places. Unfortunately the flashbacks associated with a cancer diagnosis are not typically pleasant. Fortunately, they are not horribly bad either (at least not yet).

    I’m having memories of preparing for my move from Ottawa to California. For me, move day was a complete nightmare. It was raining all morning. The packers were in a pissy mood, and they did a piss poor job of packing too (such that things got broken). I was really looking forward to joining my husband in California, but I was also concerned very much about the state of my thesis research. In some ways, not much has changed. I’ve been in California for the last year, but it occurs to me that Scott and I didn’t really get a chance to really discover living together again. We were just starting to figure things out when I was diagnosed and everything went into a tail spin.

    So, my visit back to Ottawa comes with mixed emotions. I will be happy to see so many of my friends again. As I’ve told a few people, my dance card is pretty full. I’m a little nervous about how the meeting with the program chair and my dissertation committee will go. I’m not really worried about it – it will be what it will be – but it will be nice to know so that I make more concrete plans.  I’m also looking forward to my visit with friends in Vancouver. I’m so glad I was able to fit so much into one trip – although I am a little concerned that I might be over doing it. I’ll say sorry now to anyone that I don’t manage to see – the trip is rather short and I have a lot on my plate – and I’m not yet back to my usual energetic productive self.

  • Mini-Med School

    One of the links that was shared with me after the #et4online conference was for Canvas – http://canvas.net. In looking into what was offered on the platform, I came across this course offered by the University of Colorado’s School of Medicine called Mini-Med School.

    Last year, I had heard from a friend about a similar course offered at the University of Ottawa (in person and for a fee). It sounds rather interesting, but I wasn’t willing to pay for it – and I don’t really have the ability to attend a class in person. So when I saw that this was available for free – I signed up.

    I’m in no way considering going back to school to study medicine. I am taking the course because I think it will help me understand my doctors better. I think it will help me communicate more effectively with them. I think it is a great stepping stone to being an Engaged Patient.

    And so, starting June 8th, I’ll be listening in on the classes. I’ll be looking at the design of the course to see how effective it is, but what I’m most interested in is the course content itself. I’m particularly interested in Week 7 which covers Cancer Biology.

    Anyone wanna join me? The course is FREE – sign up here – https://www.canvas.net/browse/ucdenver/courses/mini-medical-school-1

  • Thank you and body image reflections

    I want to start by saying thank-you to all those who contributed to mine and my Aunt’s Avon Walk. We have both made our fundraising minimums, and are happily no longer soliciting funds. We are working now towards preparing to walk – which means I need to get out more and walk more.

    During last week’s conference, I recorded “live on the Internet” a series of Google Hangouts with a bunch of incredible people from the conference. This means that I often saw my face on the screen. Here are some samples (you may want to watch only the first few seconds):

    Tuesday:

    Wednesday:

    Thursday:

    Notice that my hair was different in each of the clips. It is posing a never ending challenge to me. As I mentioned in an earlier post, those who know I went through chemo and saw me bald think my new hair is spectacular. Others, well … I’m mostly always having a bad hair day. I didn’t cover my hair on the airport on Saturday (I did on Tuesday) – which meant that I wasn’t treated quite as nicely by the gate agents.

    Anyways, more to the point of this post. I found that I was looking at myself on the phone/camera, not liking what I saw, but also not caring. This is a really important transition in my body image (and one that several other women at the recovery support group related to). It isn’t that I don’t want to look fabulous (who doesn’t), it is more that how I look on a particular day isn’t that important to me anymore. Sure, I’ll do what I can to look better, but I don’t carry the worry over it like I used to. Although I appear to talk about my hair a lot, that is in part because I have some! I cannot believe I was so bald for so long.

    At the conference, I had a few conversations about my breast cancer experience (none of them on air/recorded as they were much too personal to be sharing live) – one of which has been blogged about by Jill Leafstedt in her Reflections on ET4OL post. In each case, I found the conversations to be powerful and provided a way for me to connect more deeply with people. My openness helped to allow space for others to share some intimate details of their lives. It helped me make new friends – to deepened connections.

    I also am reflecting on how I totally over did it on Thursday – having drunk too much and stayed out too late – but had so much fun at karaoke, that I would not change a thing. Last time I over did it, was when I biked up Mount Hamilton the Saturday before my last surgery. I ended up with a fever the next day. I am happy to report that I managed to successfully bounce back from my indulgence. It is a sign that I am recovering. I’m getting stronger every day. It is a slow process, but I’m working hard at it. Most importantly, I’m encouraged that having fun didn’t hurt me!

  • Karaoke

    On Thursday night, after the women in ed tech dinner, I joined a bunch of the folks from the conference for some karaoke. I don’t really remember the last time I did karaoke, but each time it reminds me of one particular night screaming Bon Jovi’s “It’s my life” at the top of my lungs from the crew lounge of a container ship in the middle of the Atlantic Ocean. This time it wasn’t so much about singing Bon Jovi or Bryan Adams’ “Summer of 69”, although I somehow ended up with the mic in my hand for both those songs!

    Throughout the evening of karaoke, there were many reasons to laugh. Someone commented to me the next morning that they received an abdominal workout from how hard they laughed. I found myself nodding and thinking – if only you knew.

    I returned to my hotel room at about midnight. I smiled and then I cried. Through my tears, I posted this simple tweet:

    Screen Shot 2015-04-25 at 21.23.39

    I realized that I had not laughed so hard since before my cancer diagnosis. I had not been that happy in over a year. At karaoke, I laughed so hard I think I may have loosened some of the interior stitches that are holding my abdomen together. I say this only slightly jestingly – my abs are weak and I cannot tell if the pains I feel are just nerves regrowing or if they are overworked muscles. That night I stayed up so much later than was sensible given my morning schedule, I drank more wine than I should have, but I also laughed and laughed and laughed. Oh how I so needed that.

  • Tired, excited, having fun, exhausted

    This week I’m at an Educational Technology conference – Emerging Technologies for Online Learning (or #et4online). This was the last academic conference I went to before my breast cancer diagnosis put a halt to all my travel, so it is somewhat fitting that it is the first conference that I travelled to.

    Part of the experience is great. I spent all day talking about educational technology stuff. I’m involved in a really fun project where I’m helping to bring my friend Maha from Egypt to some of the informal portions of the conference – helping her get some one-to-one time with various speakers – which is also meaning that I’m getting to meet a lot more cool people (you can see our video hangouts on air here – https://storify.com/rjhogue/et4buddy-with-rjhogue-and-bali-maha).

    The thing is, none of them ask me about cancer. None! I found myself wondering if they actually know, and if they don’t know, then I find myself thinking “they must think I have the stupidest bad haircut ever” .. cause I have chemo hair which is frizzy and sticks up – oh how I yearn for chemo curls! It is completely uncontrollable – trust me, I’ve tried.

    I know that several of the women do know my story – they have commented on this blog, they have gone out of their way to make me feel welcome and supported (Thanks so much Whitney and Robin – you two are amazing!). I do wonder, however, especially when chatting with men, if they have any clue what my last year has involved. And just how amazing it is that I’m here at all.

    I did pretty good for most of today – keeping up with the pace of things – until about 5pm. Then I started to crash. I didn’t sleep as well as I would have liked last night. I’m a bit jet lagged (two hour time change doesn’t help), but more, I think it is just that I don’t yet have the energy that I used to have. My body is still healing. It is still recovering. I cannot spend all day running around at the conference and expect to still have energy for evening social activities. I certainly do not have the energy in me to go out drinking and then still be functioning tomorrow. Nope, a good nights sleep is what I need – but I do feel like I’m missing out on some great social opportunities.

    Since I have social activity plans tomorrow night (women in Ed Tech dinner), I’ll attempt to take an hour of down time at some point tomorrow afternoon. Hopefully that will be enough. I also need to spend a little more time sitting and less time standing … that is the plan … that and going to sleep now! Good night!

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