BC Becky

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

Category: Navigating the new me

  • Today I miss my nipples

    When you are finished with the acute treatment for breast cancer, the doctors talk about the difficult time you will have. They talk about how it is related to all the attention you get from your care providers during the acute treatment stage. Then suddenly, you are set free and feel somewhat abandoned. I definitely felt that way. However, I think that was the easy part. I found other healthcare providers to help keep me on track – I was never really left without them – I just see different people now. So instead of weekly visits with the infusion nurses, I have weekly visits with a physiotherapist.

    So, although abandonment is part of what creates the down/depressions after acute treatment, that is only a small part of it. Our healthcare providers are missing something big here – in that they are looking at the problem from a healthcare provider centric view and not from a patient point of view. From their view, they see patients feeling abandoned. They don’t seen the internal struggles that patients are facing.

    Early in my cancer journey, I wrote asking How does one prepare to lose a body part? In truth, you prepare by trying to be strong when you go into surgery, but also giving yourself permission not to be. Since I did chemotherapy first, I had a lot of time to prepare myself for the surgery. By the time surgery came, it wasn’t scary anymore. I knew what to expect. I had done my research. I was OK with it all.

    What I couldn’t prepare for was the sense of loss that comes with losing a body part. It doesn’t come right away. During acute treatment you are focused on getting done what needs to be done and staying alive. After that, you become focused on regaining your strength, and on letting the physical wounds heal. It isn’t until you start to reclaim portions of your old life that the loss really starts to sink in. It is then that you really start to internalize what has changed.

    So for me, today, I miss my nipples. I had a nipple sparing bilateral mastectomy with immediate DIEP flap reconstruction. That means, that I actually have my nipples. When I look in the mirror, they look like my nipples (mostly – they are scared and have faded and flattened). But they are also dead nipples. My reconstructed breasts have no sensation. My nipples no longer react to stimulation – they are dead inside – they only exist for cosmetic purposes. Don’t get me wrong, I’m thankful to have them – and to be able to look in the mirror and see my nipples and not some empty stomach tissue or some reconstruction of a nipple – but I am sad at the loss of sensation. I miss it. And it is this type of loss that doesn’t really sink in until you start reclaiming your old life. Until things start to get back to normal, and then you discover some little (or not so little) thing that cancer has taken away from you. And that is what makes survivorship so hard. It isn’t the abandonment from your doctors, it is those times when you realize just how much you have lost.

  • Auspicious dates and my diagnosis story

    I have a lot of anniversaries coming up … so I’m expecting that my life will be filled with emotion.

    In preparing this post, I realized that I never really wrote out my diagnosis story. I spoke it many times at support groups, but never actually wrote it out in this blog.

    It all began with the feeling of a hard spot under my left breast (June 1st). Since my stuff had arrived from Canada earlier that week, we had been unpacking. After a few days of unpacking, we decided to take Sunday afternoon off and go for a bike ride. I actually wrote a bit about the bike ride and shared some pictures when I talked about my cancerversary –http://bcbecky.com/2014/08/my-cancerversary/. I had no idea then how I would be feeling now!

    Each day, as I got out of the shower, and before I went to sleep at night, I kept checking my left breast, in hopes that the hard spot would be gone. It wasn’t. After a week – on Monday June 9th, as 8:30 in the morning I called my primary care’s office to see if I could get in and get it checked out. They had a spot open at 9:20am. I remember walking in all cavalier, and says “this is probably nothing” and “maybe I’m overreacting” but for “peace of mind” I wanted to get it check out. She did a breast exam and confirmed that I was feeling something. I could tell there was definitely some concern in her eyes. She put in a referral for diagnostic (not screening) mammogram and ultrasound. The way she explained it and the way it happened were different.

    I proceeded to go downstairs and book an appointment. The soonest they could get me in was Thursday afternoon. I went home, and jumped on my recumbent bike and went for a long bike ride. I ended up out at Scott’s office, and we rode home together. I remember upon arriving at his office that some of his coworkers were there. They wanted to try out my bike, so we did a little bit of that, before heading home. As we left the Alcatel parking lot, I told Scott that I had found a lump in my breast and that I had an appointment on Thursday to have it looked at.

    Originally, he was not going to be with me at the Thursday appointment – however, I read the information page they gave me, and at the bottom it said “You will get your results immediately”. With that, I decided that it would be better if he did come along (thank goodness!).

    The diagnostics began with a mammogram – which was horribly painful given the large lump in my breast! Then an ultrasound. The tech said – this is what you were feeling?  Uh- yah!

    After the ultrasound, they said I could get dressed and that the radiologist would like to speak to me. I mentioned that my husband was with me in the waiting room and could he please come to the discussion with the radiologist. They had no problem with that, showed us to an office, and the radiologist came in. He was pretty up front. He said – It is cancer. He had called upstairs to the surgeons office, and in 45-minutes the surgeon could seem me to do a biopsy. He commented that if his mother or wife had cancer, this is the surgeon he would recommend. At the time, I did not understand that the surgeon is the first doctor you see when you are diagnosed with breast cancer. I was surprised I wasn’t being referred to an oncologist.

    After a short walk around the PAFM Mountain View clinic, we went up to the surgeons office. The surgeon was pretty matter of fact about doing the biopsy. He said to book an appointment for the following week (when the pathology results would be known). Because of my age, he also recommended genetic counseling, so we booked that appointment too. He gave us the quick 5-minute version of the longer 45-minute talk that would happen the following week. The short comment was that I likely needed a mastectomy. While we were doing the biopsy and talking with the surgeon, the radiologist called. They wanted to see me back downstairs at the mammogram / ultrasound lab because the radiologist saw something suspicious in my other breast. So, downstairs we went, off with my top again, and he validated that it could be seen on the ultrasound. We booked an ultrasound-guided biopsy for the next day (Friday). I also had a chest x-ray and a bunch of blood work done.

    On Friday we met with the genetic councilor. We drew blood for that, but couldn’t submit the panel until we had confirmed pathology – at which time the insurance would cover the test. I did the guided ultrasound guided biopsy on Friday afternoon.

    As I was supposed to by flying to Ottawa on Saturday, I had to cancel my travel plans and inform a few people of what was happening. Because we didn’t have pathology, we didn’t want to make things public just yet. It was all very awkward.

    On the weekend, we went for a walk around Sausalito. I recall that walk because I found myself checking out women’s breasts. It was and odd thing really.

    On Monday, I received two phone calls from my surgeon confirming breast cancer in both breasts.

    On Friday, we went up to Stanford for a second opinion. After appointments, I did my first breast MRI. It was the breast MRI that showed the third tumor.

    So, there is my diagnosis story … details of how thing unfolded starting on the weekend after diagnosis are described in detail on the blog. I just seem to have missed the very start of the story.

     

  • Changing the conference experience

    I posted this initially on my other blog – but thought I would also share it here because it talks a little bit about how my outlook on life has changed. The whole purpose of conferences is different for me now – it is so much more about deepening my connections with people then it is about promoting myself.

    Last year, I wrote an article for the University of Ottawa Graduate Students Association Journal providing some tips on how to get the most out of conference travel. You can read it here: http://www.egsa-aede.ca/wp-content/uploads/2014/03/2014-mar-26-le-the-Journal.pdf

    Over the last year, I have missed the conference scene. I was diagnosed with breast cancer three days before I was due to travel, attend, and present at two conferences. All travel and conferencing had to be cancelled. My life was put on hold while I underwent treatment.

    A year later, I am getting back into the conference scene – only things are different now. I am a little more picky about which conferences I go to. Since I am mostly funding my attendance out of my own pocket, that certainly affects my choices, but also, I ask myself, will I enjoy it? You see, that is one of things that has changed in my life. If I don’t think I’m going to have fun, then it just isn’t worth it to me.

    Part of having fun involves making connections. As I discovered at et4online, making those connections before the conference made all the difference. Having an authentic online presence helped me make these connections. I also went into the conference with a purpose – the virtual buddy program that myself and Maha Bali were pilot testing. We’ve written a bit about our experiences for Hybrid Pedagogy in Maha’s column: Virtual, Hybrid, or Present? The #et4buddy Conference Experiment.

    The et4online conference also provided a great healing opportunity for me. For the first time since my diagnosis, I had fun! Like, I mean, I really had fun. I laughed so hard my stomach hurt! You cannot even begin to imagine how much I needed that.

    What this experience has meant is that I look for more in conferences now. I received an acceptance of a proposal (based on the blog outcomes survey I conducted) for the Queens University of Belfast ePatients Conference on the medical, ethical and legal repercussions of blogging and micro-blogging experiences of illness and disease. I am very excited about this opportunity, although my first concern is whether I’ll be able to connect with people in advance of the conference. I now know how much richer the conference experience is if I go with a purpose – and if I go knowing a few people.

    I was overjoyed to learn that a couple of the cancer blog mentors from my Should I blog? course are planning on attending. That means that I will know a few people at the conference. I can take the time now, before the conference to get to know them better, but also to get to know other people who might be attending the conference. If I reach out now, start following blogs and twitter now, then by the time the conference happens (September), I’ll feel more connected. It will make the on-the-ground experience so much richer.

    In so many ways our lives our busy. It is too easy to forget to spend a few moments now and then to check in on other people. It is too easy to forget about a conference until you are on the plane, quickly trying to get your presentation together before you land. In the world of last-minute preparation, you lose the true opportunity that the conference provides. It is not so much about showcasing your work as it is about connecting with people. Once you know who else is attending, you can reach out to a few people, try to get to know them, and try to connect with them before and then at the conference. It involves taking the time before the conference to make the effort to connect. If more of us did it, then all our conference experiences would be richer.

  • 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.

  • 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!

  • Blog Impact Survey – a Reminder

    Hi everyone,

    Just a quick reminder that I’m doing a study on how breast cancer blogs impact those who read them. There is little or no research on the impact of blogs have on the readers of the blog – more is done on the impact to those who write them.

    So if you are reading this now – please take a couple of minutes to complete the survey. The more detail you include in the written parts, the better.

    Here is the link: http://fluidsurveys.com/s/blogimpact/

    Thanks,
    Rebecca

  • 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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