BC Becky

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

Author: Becky

  • 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.

  • Anxiety and oncology visits

    Many cancer patients and survivors experience what we affectionately call scanxiety – that is anxiety around taking scans.

    I realized while swimming this afternoon that I experience anxiety around my oncology visits, but not just that. When I have an upcoming oncology visit I seem to focus on and think that every symptom I have is a sign that the cancer is back. I recall the level of anxiety I had the first year after treatment – it was crazy – but for the most part, I’ve moved passed it. I’ve learned how to deal with it, and reframe it (thank you cognitive behavioural therapy).

    But this anxiety is different. It is bad enough that I actually physically feel worse. I get physical symptoms. Two weeks before my annual appointment with my surgeon my arm swelled – like a recurrence of the lymphedema that I had in that crazy first year. Just before my last oncology appointment, 5 months ago, I was sure I had a cancerous lymph node in my neck. It is all pretty crazy.

    However, having now made that connection, I hope that it means the issues stop. I hope that, knowing that I have an oncology appointment the week after next, and recognizing the form of anxiety I have, means that I will no longer have that form of anxiety. Maybe I could just let that go and be OK with letting the doctor tell me that OK (or not) and not create reasons why I might not be OK.

    It sounds weird. I had not quite placed it, until I realized the repetition in what was happening … so now, I hope I can move past it because for at least another year I’ll be seeing my oncologist every 6-months and I don’t need the added anxiety.

  • An escape to Indian Wells and the desert

    An escape to Indian Wells and the desert

    When I found out that a friend from Ottawa was going to be in Indian Wells (near Palm Springs) for a conference, I seriously considered going to visit her. Then I looked into the conference more – the Literacy Research Association (LRA) annual conference. My academic supervisor suggested that I could benefit from attending. Going involved a long drive, but I decided it was worth it. It was a chance to visit a friend, and also to be immersed in an academic space for a few days.

    With access to a hotel room at the conference (I actually slept in my van and showered in the hotel – sleeping in the van meant I was much more comfortable and had my own space, so I wasn’t disturbing anyone). It worked out well, and I enjoyed the sessions that I attended. I also, especially, enjoying doing Virtually Connecting at the conference. It has been a long time since I’ve been the onsite person for Virtually Connecting. I had forgotten just how rewarding it can be.

    After the conference, my friend and I escaped the resort in Indian Wells and drove up through Joshua Tree National Park before I delivered her to her hotel in Fullerton CA. It was awesome just spending a day with a friend showing her one of my favourite parts of California. We also took some fun pictures.

    Taking off for a week, unexpectedly, at the end of the semester may not have been the best idea, but from a self-care perspective it is what I needed. I’m so glad I did it.

    Here are some photos.


    Julie and I with Joshua Trees in the background.


    Selfie in the Cholla garden.


    Cholla garden overlooking the Colorado desert.


    Cholla garden.


    Cholla close-up – notice the spikes and blooms


    Julie and I in front of an Ocotillo plant


    Ocotillo flowers – Julie had a sharp eye and spotted a blooming plant from the road. There were a lot of the plants but this is the only one that we saw flowers on.

  • Lots of updates – missing dates – Lori’s memorial – getting back to the gym

    Lots of updates – missing dates – Lori’s memorial – getting back to the gym

    For the first couple of years, every one of my treatment milestones was something I looked back on. I know the dates, but now I don’t necessarily recognize them. Had Facebook not shown me a menu from Stanford Hospital I would have forgotten that on November 19, 2014 I had my first cancer surgery. That was the last day I felt my nipples :-(. I still miss them, but have grown into my new body quite nicely.

    I don’t consider November 19 my cancer free day because the surgery didn’t remove all my cancer. It got some of it, but not all of it. We knew that was likely to happen and were not worried because we had the big surgery planned for December 17 – December 17 is my cancer free day. It is the day I recognize as my first day of remission.

    Got back to the gym yesterday for the first time in a long time. It felt good to do some aerobic activity. I even managed a short swim – the air quality wasn’t great, but it wasn’t so bad that they had close the pool – which they did several days last weed and over the weekend.

    The air quality was certainly an issue at Lori’s memorial. For those in the UK, you can watch the documentary that she was in at:

    https://www.bbc.co.uk/iplayer/episode/b0bshjrp/louis-theroux-altered-states-2-choosing-death

    I haven’t yet figured out how to view it in the US online. We had a special screening of the documentary as part of Lori’s Celebration of Life. I knew that they had put something in memory of Lori at the end, and yet, that last screen with her picture and the date – October 20, 2018 – brought everyone in the audience to tears. She did a great job of explaining the complexities around her decision, and how having some sense of control helped her. In the end, she died naturally, without using the medications. But she was comforted knowing that if she needed the meds, she had access to them.

    A lot of people asked me how I’m doing. It is an odd thing. I am doing OK. I think that had I not had the opportunity to practice grieving at Commonweal, and to really spend quality time with Lori near the end of her life, it might be different. But it isn’t. I know that the last couple of months were difficult for her, and yet she managed a couple of outings with her boys, which was the way she wanted to end her life. She used every breath she had to live and to love. I miss her dearly, but I’m OK.

    What is getting to me more than grieving is the horrible air quality from the fires. Behind stuck indoors most of the time is driving me crazy. I’m glad that we have good air quality inside the house, but I’d really like to be spending more time outside. We are expecting rain on Wednesday and Friday (finally), which should help clean the air and fight the fires. Because many of the fires where on steep hillsides, the next danger will be landslides. If it isn’t one this it is another.

    On nice days we love California, especially this time of year. On smokey days, we find ourselves wishing for slushy wet snow and the smell of moldy leaves …

  • An afternoon off

    An afternoon off

    The fires up north are causing horrible air quality in the Bay Area. Today got worse, so now it is unhealthy for anyone to be outdoors. Fortunately, I have a couple of air cleaners inside the house that are keeping the indoor air quality pretty good.

    The smoke had me in a pretty sad mood, so I really needed a day where I could get outside and exercise. Yesterday afternoon I decided to escape the poor air quality and head over to the beach in Santa Cruz. I had heard that the forecast was for the wind to be coming from the ocean (a west wind – I think that is offshore), rather than the south east winds we have been getting. That change meant that the beach on Santa Cruz had good air quality.

    I especially enjoyed watching the pelicans from the pier. It was hard to get a decent picture because it was into the sun, but here are the best of the ones I took:

    Today I’m stuck indoors – hopefully that will translate to getting a bunch of work done!

  • Writing

    I realized today, while having a writing session with my academic supervisor, that I haven’t been writing lately. Not for this blog, but also not for any of my other blogs. It seems that one thing that happens to me when I am grieving is that I stop writing – or more, that I lose the inspiration to write.

    I noted it most profoundly shortly after my mother died. I realized that I had counted on her reading my blog, so I always knew that she was there.

    With Lori, she didn’t read my blog that often – mostly when it crossed her Facebook feed, but we talked. When we didn’t actually talk, we texted. When she was well enough to hike, we would spend hours talking. I heard the same stories over and over. I shared the same stories over and over. We also talked about life and what was bugging us that day. And we talked about death. We talked about how she was preparing for death, and her desire to get the meds for the end-of-life-options act, not necessarily so that she could use them, but to reduce her anxiety about dying. To know that she could use them if she wanted to. In the end, it didn’t come to that. She passed quickly in the arms of her oldest son. She often told me that they grew up together – she was 19 when she had him – she worked two jobs while going to college just so that they could live.

    This morning, during the writing session, I was forced to sit in front of my computer and just write. I didn’t necessarily feel like I had read enough, but I needed to just sit and write. It turns out that I had a lot to say. I went back to some blog posts I had written before mom was sick, while I was working on my dissertation. There were several reflective posts that fit into the part of the dissertation chapter that I’m currently working on. It made me realize that I may be further along than I thought, but also that I do a lot of my thinking while writing, and by not writing, I’m not processing things.

    I’m not feeling overwhelmingly sad, which is something that I was afraid was going to happen. I’m doing lots of grieving in community – in that I’m grieving with different groups of friends and different times, and each time I go through this grieving in community process I feel better. I am so glad to be part of such an amazingly supportive community. But, since the grieving has stopped me from writing, it has in some ways stopped me from processing.

    And so, I’m going to try to spend more time writing – more time blogging – more time writing in this reflective way. I need to start ‘seeing’ blog posts again. It is like I’ve lost my muse, and I no longer see the world through the lens of blog posts – or more, that I’m not seeing blog posts from the everyday things that are happening in my life.

    I’m going to try to keep writing. I’m going to watch for Marie’s weekly writing prompt and see if that inspires me, but also I’m going to look for writing prompts in the other things that I do. I have several things to think about regarding blogging, so that is a start.

    Here is to getting back on the metaphorical horse, and getting back to writing again. I miss the connection I have to my readers, even when I don’t know who is actually reading it. There is still a sense of connection there. Interesting.

  • Always an advocate and friend

    As many of you know, my best friend Lori wasn’t doing well. She had a bad progression of Metastatic breast cancer (MBC). Last Saturday – a week ago today – she died. I didn’t announce it on my blog because I wanted to wait until the family had finished writing and announcing on social media.

    It has been really hard on me. Lori felt guilty that she was going to die so close to the time that my mother passed – that her illness was going to be just one more thing to push me over the edge. Fortunately, three weeks ago, we shared an amazing weekend together at Commonweal as part of a weekend long retreat. That time was so powerfully healing for me. It helped me a lot with healing from mom’s passing, but also helped me come to terms with the fact that I’d be loosing Lori soon. She wasn’t bouncing back from that last progression – and the previous two month had taken so much out of her – including a near death experience as the result of an allergic reaction to a chemo. In the end she was fragile – her bones were brittle from all the tumors. Her lungs were not happy, but neither was her liver. It was just too much.

    That being said, she didn’t ever stop. The weekend before she died, she spent a powerful weekend with her boys, whom she loved dearly, educating about metastatic breast cancer – and highlighting that #pinkisnotacure. When I asked her about it, she said it was epic. She had a great day – and it was awesome that she got to share it with her husband and two sons.

    I’ll forever miss her – but I am so glad I got to spend as much time with her as I did. We hiked, usually twice a week, for the last three years. We smiled, we laughed, and we cried. I listened to her say, in the way she did, “that is not OK!” and “ya, right?” … I can hear her voice in my mind.

    I was away much of this last week at a conference, and I found myself wanting to send her texts – which I would often do multiple times per day – only to remember, that she wasn’t there to receive the texts. Right now, that is when I miss her the most. All those times when I have something I want to share with her and she isn’t there to hear it.

    I thought I’d share here the memorial post that her boys put together and posted on Facebook. They did a great job of capturing her spirit. She chose the photo before she passed …

    lori

    Always with Us, Always the Activist

    Lori Lynn Wallace-Pushinaitis will be forever missed after her passing Saturday night, October 20th, 2018. She died peacefully at home after a 7+ year, hard fought battle with breast cancer. Lori was a caring person who touched the lives of so many, but first and foremost, she was a fiercely loving Mother, and a supportive and loving Wife.

    Always the activist, Lori was first, deeply committed to caring for the environment throughout her tenure with the City of San Jose, Environmental Services Department. If you decided to throw recycle in the garbage, or let the water run too long in Lori’s presence, you did so at your own risk!

    When, in 2011 Lori was diagnosed with Stage lla breast cancer her focus turned to advocating not only for herself, but also for her fellow cancer sisters, of which there are many. She was an active member of the support group BAYS (Bay Area Young Survivors) where she both gave and received endless support to and from young women who were going through similar struggles. As the years passed, so did many of the women she grew to love so much, from a disease that she felt received more funding and attention for Awareness, than a Cure. This is where her activism took wings.

    Two organizations that she felt properly addressed metastatic breast cancer and the funding needed for finding a cure are Metavivor, and Metup. She traveled the country extensively attending various conferences to bring attention to their cause.

    As Lori’s cancer progression started to take its toll on her mind and body she decided to make sure she had the opportunity to pass with dignity, and on her own terms, when the time came. A fierce supporter of the California End of Life Option Act, she was asked to take part in the documentary Altered States BBC documentary, “Death”, produced by the BBC’s Louis Theroux. Louis and his film crew traveled to our home, visited with us while on vacation, and followed Lori through some of her daily trials, to shine a light on how the California End of Life Option Act can give people some comfort and control as they near the ends of their lives. Lori was extremely passionate in advocating for the End of Life Option Act in California, so terminally ill patients like herself would have the right to die with dignity, and on their own terms. This film is a parting legacy of Lori’s heroic activism and passion for what she believed in.

    Lori has also published two short stories,

    “Fuck Silver Linings and Pink Ribbons”, can be found in the book Shivering in a Paper Gown

    “100% a Mom”, can be found in the book, Agony and Absurdity: Adventures in Cancerland

    Lori is survived by her father Robert, sons Evan and Braden, husband Mark, extended family, and so many friends that have been touched by her Love and Kindness.

    Patient advocacy and cancer support groups that were important to Lori’s cancer journey and require special thanks, BAYS (Bay Area Young Survivors), Metavivor, Metup, First Descent, Commonweal, and Young Survival Coalition

  • Checkups and practicing grief

    This week I had my one year check-up with my surgeon. The timing was good, as I wanted to get checked out because of the new bought of lymphedema. As I always, I went into the appointment with a bit of trepidation. I always have a little worry, especially when something like a sudden onset of lymphedema happens – but I also check myself daily, I did not feel any hard lymph nodes.

    My surgeon entered the room and gave me a big hug. She was on sabbatical last year, so I didn’t see her then. It is a huge progress that I managed a full year without an appointment with my breast surgery team – so no freak outs in that area (I still had some in other areas though as I still see my oncologist every 20 weeks). After a thorough exam she held my hands and gave me the all clear. Return in a year. I’ll see my oncologist in 10 weeks, so if I still have concerns about my lymph system, I can address that with him then. For now, I have my mantra “in the absence of a diagnosis, I am healthy”.

    My friend Lori on the other hand isn’t doing well. One of the ideas that was mentioned at Commonweal last weekend is that we need to practice grief. That grief was like a whale taking a deep dive, but then needing to come back up for air. Practicing helps us get out of the intense deep dive and come up for air. Lori and I joked that her health ups and downs were like practicing grief – and that perhaps we shouldn’t be practicing it so much. When she has bad days, I worry that the end is near. Then she bounces back, but the bounce back is like a ball, losing a little height every time it happens.

    When I went to get my lupron shot on Monday, the nurse mentioned the idea of grief bursts – that sudden intense sense of grief that can be triggered by pretty much anything. Somehow giving them a name helps to identify what is happening and helps to make it OK. I know that grief takes time, and that I am allowed to have those intense bursts of grief, but not having a name of that feeling makes it more difficult to bare. Now when it happens, I can identify it, allow it to happen, and then come back up for air.

    Today, I’m off to get some new compression sleeves, as my old ones are worn out. Then I’m off for a hike. My body will be happy for the exercise and the fresh air. My mind will be happy for the contemplation time.

  • Powerful, tearful, and memorable weekend at Commonweal

    When Lori mentioned to me that the MBC (Metastatic Breast Cancer) weekend at Commonweal – two and half day retreat for young (those diagnosed with breast cancer under 45) women with metastatic breast cancer – had space that was not going to be filled, I found myself wondering if they would accept me to join them even though I didn’t have Mets. I would not take the spot of anyone with Mets, but if a spot was available it was exactly what I needed.

    Fortunately, we were able to make it all work out. I was able to drive 2 people who would have otherwise had a challenge to get there, or would not have been able to go at all. In that way I was helping the community.

    The weekend turned out to be exactly what I needed. It was special on so many levels. It was special because I got to spend some time having a variety of experiences with several of my friends – moments that I will cherish and take with me forever. I have cemented the visual but also the feeling of love into my mind. That was a gift.

    We cried and laughed and cried some more … we did a lot of crying. I learned that grief tears are good for your skin. They are certainly good for your soul.

    The other thing that worked well for me was that I was able to do some specific grieving. I was able to participate in a grief ritual that helped me address some of the grief over the loss of my mother, but also the grief know that I will lose my friends.

    There was another point in the weekend, where myself and the photographer headed out to the chapel. I wanted to get some photos taken of me laying down in the chapel looking at the ceiling and contemplating. I had brought one of my mothers shall/wraps to wear. When I lay down, the photographer took the front ends of the shawl and crossed them over my chest says “your mother is giving you a hug now”.  That was a real gift. Now anytime I wear that shall I will feel like I’m getting a hug from mom.

    Unfortunately, I also discovered that my left hand and arm are swelling again. It seems that for some reason my lymphedema has returned. I haven’t been swimming much lately, which might be a contributing factor, but it might not be. I have no idea. Anyways, I’m back to wearing a compression sleeve to keep the swelling down. I can go back in the pool started Wednesday (2 weeks after my eye procedure), so I will need to add regular swims to my priority list.

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