BC Becky

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

Category: Four years and counting

  • Not blogging much – and transitions

    Not blogging much – and transitions

    I haven’t been blogging that much lately. Mostly my writing energy has been taken up by my dissertation. I finished the first draft of all my analysis chapters yesterday. Now I go back to the beginning and fill in any gaps that I left. It is an exciting feeling knowing that I’m finally making progress again. I can see the light at the end of the tunnel.

    I am also writing a lot for the classes I’m teaching. I took on a new class this semester – I’m co-teaching a class on learning theories. I love learning theories, so it is great to have the opportunity to go through the latest research and articles in search of good content for the class. I’m also creating explainer videos like this one: https://youtu.be/_xnG-sjHccs. I didn’t realize how much I missed building things like this. I love creating things using educational technologies.

    With progress on my dissertation and having made 4 years in remission, I’m starting to see that a transition is coming in my life. I don’t quite know what it will be. I can see a time when I’m not working on my dissertation and I have more free time to do other things.

    Maybe the transition is that I am leaving 2018 behind. I’ve always identified more with Chinese New Year than the calendar new year. I think because it aligns more with my birthday, so I feel the year changing a lot more than I do when the calendar year changes.

    I feel like this will be a year of transition for me …

    Feature image created using Presenter Media.

  • Survivorship badge

    Survivorship badge

    In this week’s newsletter, Nancy highlights an older post where she asks What’s wrong with a survivorship badge anyways?

    I have been reflecting a lot lately on survivorship – but also where I’m going to go next with my life. This is never an easy task – this contemplation.

    I am a survivor and get that doesn’t mean cancer is over. For the majority of people breast cancer is never over. There will never be a time when I go to the doctor’s office and don’t have my history of cancer play some role in what is happening.

    I recall when I was first diagnosed and learning a lot – asking the question, if I get treated at Stanford, do I get to wear the sweater? Now, really what I was thinking was that I was doing so much learning that I should have earned at least a masters degree! There should be an ePatient masters degree – wouldn’t that be a novel idea. Something setup to help patients through disease but also beyond – for those who want to learn more about being a patient and an advocate. It would totally be an appropriate degree – perhaps within a faculty of education or health sciences. (I see it more as a social science than a medical or natural science).

    As I mentioned in my last post, over Christmas I had a great trip to Bryce Canyon, but also managed to crack a rib mountain biking.

    We had a great vacation in Hawaii, despite my cracked rib. Kauai turned out to be a blessing that we had not expected. We stayed at a lovely place, soaked in the natural beauty, and ate lots of just made chocolate (one of the friends we were with was taking a bean-to-bar chocolate making class, so we got to test lots of samples). I even go to attend a workshop and observe how chocolate is made from the bean to bar. And I feel like I could munch on raw (fermented but not roasted) chocolate beans all day.

    After Kauai, we spent a few days on Maui. When we booked the trip I also booked a boat trip – with Sail Maui – to Molokini. We had done the same trip the first time we went to Maui, but the wind direction meant that we didn’t make it to Molokini. This time, the winds were calm, and coming from the right direction that we did get to Molokini – which had some pretty cool snorkelling, but too many people as it is a prime tour boat destination. Along the way, we got to see whales, a couple up close – as we were watching one out front on the bow, another popped up right behind the boat surprising everyone. The two of them swam beside the boat and then went under the trampoline that we were standing on (it was a catamaran). It was all very exciting – and let to an amazing day. The trip had many amazing days, all of them in different ways.

    By the time our vacation came to an end, we were ready to be home. I was re-energized and ready to jump into work and dissertation writing … and then, I woke up with a sore throat … the cold that had been going around had caught up to me. Unfortunately, this cold went to my lungs pretty quickly, and turned into a nasty case of bronchitis, which as knocked me down at a time when I have a lot of work to do – classes start on Monday and I am prepping two courses, one that I have not taught before. So I’m trying to get that done while hoping I can speak for long enough without coughing to record presentations. Ugg…

    So this brings me back to the survivorship badge … I took on the survivor label after treatment because it is the term that everyone uses. After watching my friend die, I feel more like a survivor. I am here, she is not. Part of my role as a survivor is to hold her in my memory. I am thankful for our friendship.

    My survivor badge is one that contains the memories of all the friends that I have today because of my cancer diagnosis – and the friends I have lost. I think I have earned that badge many times over.

    What would your survivor badge contain?

    Feature image: View from Hindu monastery on Maui  © Rebecca Hogue.

  • Healing is exhausting and weird sensations

    Healing is exhausting and weird sensations

    I am surprised by how tired I am. Then I remember myself, my body is healing. It is working overtime to try to compensate for the broken rib. Also, pain is tiring. You add those two things together and I find myself sleeping longer and wanting afternoon naps.

    I am struck by the oddness associated with feeling the area around my broken rib. I can feel the pain in my sternum and under my breast. When I roll my shoulders back I can feel a tightness in the muscle that runs under my breast. But I have no feeling in the breast tissue (note that my breasts are not breasts, but rather fat that has been relocated from my stomach). For the first time in four years I have feeling in that area. It is like the nerves under the fat have awoken. The sensation is really odd.

    One thing that the numbness makes easier, but is also worrisome, is that I don’t feel the chill of the icepack when I am icing the rib. I can feel it a little below my breasts, but the part that is touching the breast has no sensation. I say worrisome, in that I don’t know if I am overcooling it.

    When I first injured myself, I found myself worrying. I was paranoid that the injury might do something to cause my flap to tie (that is the relocated tissue). With the pain I really expected bruising. I was afraid that I would see a big bruise and that it would turn into fat necrosis. Now, I don’t even know if that is something that could happen. I know there are lots of worries early on when the blood flow is still establishing and things are healing, but I’m four years out and well healed from the surgery. I was surprised that I did not see any bruising given the amount of pain I was in.

    I did ice when we got back to the van (riding my bike for another 30 minutes after falling!). I also iced the next day after hiking for 4-miles. I thought things were starting to heal, but then we had to pack the van up, and when I went to move something, I felt something move in an odd way – kind of like a knot in a muscle can be moves when you push on it – only I wasn’t pushing, I was bending over. It didn’t immediately bring pain, but shortly afterwards the pain increased.

    I wasn’t sure if the increase in pain was related to altitude changes – we had been up at 8000 feet and drove over a 10000 ft pass, and were gradually descending down to 3000 feet at our overnight campsite. We stopped in town to get some instant ice (I hate disposable things, but in the van in the middle of no where the instant ice is handy). I iced throughout the day when I wasn’t the one driving. The pain didn’t get any better – and was not better the next day either. I booked an apt to see my doctor – which led to the x-ray and diagnosis of a fracture on my sixth rib. I went onto the internet to figure out where the 6th rib was – right under my breast at the bra line … hmmm… things started to make sense. The weird sensation that I felt on the 26th was right about where the break is. Knowing the location also helps me know where I should be concentrating my icing efforts.

    I’m now wearing a rib brace when I’m awake. It helps a little. The doc said to wear it only if it helps relieve the pain. Since rib 6 is in the middle, the alignment and stability is mostly done by the ribs around it. As the soreness of the surrounding area subsides (with the break, there was also straining of the costal cartilage where the ribs attach to the sternum), the brace will become unnecessary.

    But I go back to the title of the post. I am surprised by just how tired it is making me, but also how weird it feels to have sensation in an area under my breast tissue – an area that I had thought of as completely numb.

    Feature image CC-BY via OpenStax College [CC BY 3.0], via Wikimedia Commons

  • Goals for 2019

    Goals for 2019

    I am glad that 2018 is over. It has not been the best of years for me, especially the last half.

    I don’t do new years resolutions, but I do want to share some goals for the new year.

    This year my goals are:

    • To finish my PhD
    • To get into better physical shape
    • To get better at mountain biking – which means I first need to heal from my broken rib! oops
    • To spend more time in nature
    • To develop more of a portfolio of instructional design teaching and work
    • To reconnect with a lot of my online friends / colleagues – I feel that with everything happening last year, I had to disengage and I’m looking forward to re-engaging

    I also want to worry less about recurrence. I have written before about how I seem to panic right around the time I have a doctor’s appointment. I don’t want that. I want to live my mantra – In the absence of a diagnosis I am healthy!

    What goals do you have for the coming year?

    Feature image by Marco Verch via Flickr.

  • Christmas in the canyons

    This year, our Christmas trip took us to the canyons … specifically to Owl Canyon in California, Red Rock Canyon in Nevada, and Bryce Canyon in Utah.

    In part this trip was a chance to test out our van and to just get away from it all. We took some time organizing and packing before we left. I was amazed at how much stuff we could fit, and how much room we had.  We managed to bring along everything we needed for mountain biking, hiking, and cross-country skiing and the van still felt like it had room. It was also a great test of the solar panel charging system, which worked well.

    Part of the reason to get away this year was that I was anticipating a difficult year. Mom’s birthday was December 24th. She would have been 69. I expected that to weigh on me, but somehow it did not. I think the distraction of Bryce Canyon kept me at peace. Bryce was so amazing that it kind of ruined some of the views on the trip home.

    Owl Canyon is our new rest stop on the way to and from the east. It is about a 6 hour drive from home, which makes it the perfect distance for our first and last night when we travel in that direction. We had a little issue with water in the van on the way out, so we spent a little extra time in the morning drying things out and hanging out. Scott took a great picture of me eating breakfast at the picnic table. Shortly after this picture I pulled out my laptop and did some work on my dissertation.

    On our second day, we had planned on staying at Red Rock Canyon just outside of Las Vegas, but the government shutdown meant that the campground was closed. We ended up finding a BLM site that was still open east of Vegas. Unfortunately it was a site that was frequented by ATVs, so we were awoken at 7:30 am by the buzzing and ATVs in the area. It looked like a great place to pull out our mountain bikes and explore. We did have a nice 45 minute ride, however, 10 minutes in I took a pretty nasty spill – going too fast down a hill and trying to get up the other side. The place where were riding was clearly above my current skill set with the bike (oops). Yesterday, I had an x-ray and it confirmed that I cracked my 6th rib – ouch. It didn’t stop me from continuing to bike and from going on a hike the following day in Bryce Canyon.

    Fortunately, the state of Utah paid to have a portion of Bryce Canyon open to the public. This meant that the visitor center and the first two parking lots (Sunrise point and sunset point) were open. It worked out well because it aligned with the hike that we wanted to do. We hiked 4 miles – which given that we started at 8000 feet is quite a feat. My rib wasn’t bugging me too much at that point, although by the end of the hike I was getting unhappy about it all. We were luck,  December 24 was the perfect day for the hike. I felt at peace while walking through the canyon and looking up at the spectacular views. Rather than share one picture, I’ll put the gallery in here – these are mostly photos that my husband took – no picture can really capture the awe-inspiring views.

    We woke up to a white Christmas. We were both not feeling great – Scott with a cold, me with sore ribs – so mostly we hung out in our hotel room. Eventually we did get up and went for a short walk in the snow. The roads to Bryce were being plowed but were icy. Fortunately the van drove well in the snow and ice, and we as Canadians had a lot of practice driving in those conditions. Our hike turned out to be rather short that day. The blizzard like blowing snow meant that it was both cold and there were not too many views to be had along the rim trail.

    Given my sore ribs and Scott’s cold, we decided to head home after our Bryce Canyon visit, rather than spending more time exploring. It was the right decision, as I had a difficult Friday with lots of pain (now I know why). After a couple of days at home and some rest and regular icing, I’m not feeling nearly as bad. I’m also hoping to spend some time working on my dissertation.

    I also have decided that I’m not going to do a 2018 respective looking backward blog post. Much of 2018 sucked. Rather, I’m going to write something about 2019. Not a new years resolution post but rather setting some goals for 2019 – looking forward and deciding what things I want to do next year.

  • Danger and opportunity — oh ya, and four years of remission …

    Danger and opportunity — oh ya, and four years of remission …

    “More than a decade after writing At the Will of the Body, I still think of illness as a balance of danger and opportunity. The danger is that one can become lost in self-absorption from attending too long and too carefully to all that may be wrong in an ill body. The opportunity is in the moments of honest mutual recognition that people can experience only when they are willing to acknowledge their own vulnerability. Danger and opportunity are an inseparable braid, one folding endlessly into the other.” (Frank, 1991, 2002, p.143)

    I do wonder if I am too self-absorbed in my experience. It is the focus of my research, so that adds to another level of self-absorption. I find that my focus on what might be wrong with my body is always emphasized shortly before oncology appointments – or when the weather prevents me from getting enough exercise.

    I had an oncologist appointment today. I was sad because it was at the same location as where I last saw Lori alive. It was at the same clinic that I took Lori to for many different appointments – doctors, chemotherapy, radiation … it meant that as I had multiple appointments at multiple places in the clinic, each one brought with it a memory.

    Today, my oncologist today confirmed that I’m still doing ok. As far as we know my cancer is still in remission. Come back in 5-months … yay.

    I do regularly reflect on life in a way that I didn’t before I was diagnosed. I think about my mortality and regularly question whether or not I’m doing what I want to be doing with my life. I am looking forward to some upcoming vacations – we are so in need as with everything with mom this year, we haven’t had much of a vacation.

    I am really happy with my teaching at the moment. Even though last semester was a rough semester. It seemed like all my students were going through life crisis while trying to study. I like the way that UMB treats me (although, we’ll see how that goes when I get my student feedback back after this last difficult semester!). I like the classes that I teach and I enjoy staying up to date with the latest trends in instructional design and learning technology. I do find myself wondering if I’d like to do instructional design as a consultant again? Or if the regular updates to my courses will keep my instructional design itch scratched.

    I have decided to go back to my dissertation. I’m making progress on it now. I’m no longer stuck on the chapter that I was stuck on. I’m moving forward. I’m trying to get a draft out soon, but there are always competitions for my time.

    Today marks 4 years in remission. Four years ago today I was rolled into surgery at the crack of dawn for a 10-hour surgery that removed the last of the known cancer in my body and also reshaped my torso, moving my stomach up to replace the missing breast tissue. I didn’t feel the overwhelming sadness that I have felt at other remission anniversaries. I cannot imagine a time when December 17 will ever be just a regular day, but for now, I will be happy with adding another candle to my cake (figuratively, not literally) … four years and counting …

    Feature image: Berliner Schildkröte [CC BY-SA 3.0], via Wikimedia Commons.

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