BC Becky

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

Year: 2015

  • 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.

  • 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.

  • Empathy Cards

    These new empathy cards by Emily McDowell have crossed my social media stream several times in the last few days –http://emilymcdowell.com/collections/cards/Empathy-Cards.

    I think they are the most awesome cards to send to someone who is experiencing cancer, so I thought I’d share the link here. As a cancer survivor, she really does a great job of giving people in our lives some tools to say things when they really don’t know what or how to say them … take a look, it’s OK to giggle, but I also encourage you to really think about why these cards resonate so much with people going through cancer treatment.

  • 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.

  • Routine breast cancer screening …

    In today’s Washington Post there is an article by Karuna Jaggar entitled “Stop routine breast-cancer screening. Science has shown they don’t save lives“. As someone who just spent the better part of a year being treated for breast cancer, you’d think that I would disagree with this article – but you’d be wrong. You see, I don’t believe in making general population policy decisions based upon emotional reactions to individual cases. I think there is some pretty good evidence that needs to be considered here.

    The thing that scares me most in the article is this paragraph:

    Mammography screening, which has been widely promoted for women in their 40s since the 1980s, is failing to meet our expectations of extending women’s lives. Routine breast cancer screening was supposed to prevent women from dying of breast cancer, but studies have shown that the “early detection saves lives” mantra just isn’t true for breast cancer.

    It scares me because it is important – and yet so much money is spent on awareness campaigns that are all about “early detection”. The whole frickin’ month of October is all about making things pink so that people learn more about breast cancer. Awareness made sense 30 years ago when breast cancer was a taboo subject. It no longer makes sense to be wasting money on awareness campaigns when that same money could be funneled to research that is actually saving lives.

    For me personally, I had my first mammogram after I felt a lump. My new US doctor had ordered one three months earlier to get a baseline, but I knew that screening in Canada didn’t typically begin until age 50. I had heard a CBC documentary on mammography several years ago (I think it was on Ideas back in 2011, but I could not find the link – there is an article from 2011 about it here) and it has also recently been in the news (see Breast cancer death rates in Canada didn’t improve with mammograms). I had heard that early detection does not change outcomes. Early detection increases 5-year survival rates, but doesn’t change death rates. What that means is that detecting it early means that you live with it longer – it doesn’t mean that it save lives.

    I know that I cannot be 100% certain of things, but I’m pretty sure that I did not have cancer when my doctor ordered the mammogram back in January 2014. Had I done the test, I likely would have been all cleared, and when I felt the lump, I likely would have dismissed it for at least an additional week or two. I had other symptoms (change in discharge) that would have eventually led to me to my doctors office.

    One of the reasons I dislike the “early detection saves lives” mantra is that it makes women with late stage disease feel guilty. For that matter, it makes all women feel guilty. We all go through the process of asking ourselves “What if I had caught it earlier?” It makes women with cancer feel like they failed to do something. It puts blame on the cancer patient. The problem is, that catching it sooner doesn’t seem to matter with breast cancer. It may with other cancers, but it doesn’t with breast cancer.

    The exception to this rule may be for those who have a family history of breast cancer and those with genetic mutations – but the “early detection saves lives” message isn’t about people with a family history, rather is it sent to the general population. 80% of people who get breast cancer do not have a family history. And honestly, we don’t know yet if early detection for those with BRCA genes actually makes a difference in their survival. We haven’t been able to detect the gene for long enough to know if prophylactic surgery actually increases overall survival. It is too soon to tell. Note that I do not have an opinion either way on what one should do if they have a BRCA or other genetic mutation that increases their risk. My only opinion is that they should have the choice of what they wish to do.

    So, I am happy to see more news articles about the controversy over routine mammography screening. I’d love to see organizations like the American Cancer Society stop wasting money pushing campaigns to increase ineffective screening tests when they could be spending that money on funding research to improve treatment options, which in turn actually saves lives.

     

  • 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!

css.php