BC Becky

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

Category: Three years and counting

  • 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.

  • 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.

  • Chai Tea? Nope, California Bay Leaf

    Chai Tea? Nope, California Bay Leaf

    Some of you know that I love to hike. Several times while hiking I noticed a distinct smell – that smelled to me like Chai Tea. For the longest time, I thought it was a combination of native thyme plants and eucalyptus trees, which are often found in the areas where I hike.

    However, I was wrong. I recently learned that what I was smelling was not someone carrying a chai tea while hiking (that would be odd on a hot summer day), but rather it was the California Bay laurel, and the leaves are known as California Bay leaves. They are culinary leaves similar to the traditional bay leaf you find in the spice section of the store – only a slightly stronger flavor.

    On my last hike, I finally remembered to pick up a few leaves. I like to make green lentils with bay leaf, as it adds a wonderful flavor. Today, I’m trying it out with the California bay leaf that I picked up while hiking.

    Amusingly, when I googled it, I found that people actually sell “wild” California bay leave on Etsy.

  • I can see – mostly

    I can see – mostly

    One of the challenges I’m having now is figuring out who in my family to tell things to. I didn’t blog about this sooner because I didn’t know who I was telling. I didn’t really tell anyone until the day before (Tuesday). Wednesday during the day was nervewracking – but I also had a lot of work that I needed to do, as I was anticipating not being on my computer for several days.

    Recently, I decided to do a procedure on my left eye that would make it similar to my right eye. Ever since my cataract surgery back in early 2014, I have not been happy with my eyesight. My cancer diagnosis slowed down any correction to the problem – because the focus of all medical things became cancer treatment. I got a few prescriptions and learned to live with my eyesight. I wasn’t happy with it, and often felt that I wished I had opted for the more traditional cataract surgery rather than the “monovision” that I was supposed to have – especially because the monovision didn’t turn out right.

    Yesterday, I did it. I decided only a couple weeks ago that I was going to do it, and then found that there was an opening yesterday. I knew I was going to do it, and I didn’t want to wait. I wanted it to be healed before I go to a conference in mid-October and definitely before winter vacations.

    The procedure I had was the newer variant of PRK (photorefractive keratectomy). I had the same procedure back in 2006 and swore I’d never do it again. The recovery from it was hell – however, I really enjoyed having better than 20/20 vision. This time, the doctor told me that recovery was a lot better – and so far, he is correct – it is so much better than it was. They actually don’t prescribe opioids for the procedure anymore. Last time, I was drugged up for several days and had a severe sensitivity to light.

    It is just the first day after surgery and already the doctor tells me that my eyesight in my left eye means that I am cleared to drive. I was able to buy some inexpensive -1.50 glasses from Amazon (surprised me, but there must be a market for those post cataract while waiting for the eyes to settle). It can take up to six months for the eye to settle into its final prescription, so there is no point in purchasing expensive glasses. The inexpensive ones are good enough – and will allow me to drive both during night and day (I bought sunglasses for daytime and clear ones for night). They might look a little goofy – I don’t know, they haven’t arrived yet, but they will do until I know for certain what my final prescription will be.

    It will be a lot easier to get glasses now, as my prescription in both eyes will be close. I’ll still need glasses for distance if I want things to be clear (like driving unfamiliar places and sight seeing). I’ll also need reading glasses for close up – but again, with both eyes being the same I can buy cheep over the counter glasses. No need for anything special. And already I can see my computer without glasses – which is amazing. My left eye is still cloudy and fuzzy – but the difference from before and now is amazing. I cannot believe how much harder my brain had to work when I was doing things without my glasses on. I’m also noticing that I’m seeing better in low light – it used to be that twilight was the worst time, because my brain could not figure out what to do with my eyes.

    And so, I’m happy to report that so far so good. If you see me online, I probably won’t be wearing glasses, and if you see me at other times, I might have a dorky pair on.

    Feature image: Credit my husband – yes that is my eye!

  • Mountain Biking and Wilder Ranch

    Yesterday we rented mountain bikes and went for our second ride – having doing a “tour” a couple weeks ago that involved a few small lessons. The lessons came in handy. This time my rented bike had a smaller frame which fit a lot better. I didn’t end up with nearly as many bruises 🙂

    We both learned that we need more practice in climbing. The uphills killed us, but we had a lot of fun going down.

    Here is the selfie we too before deciding to turn around and head back down, after over an hour of climbing we were finished with the hard part!

    Once we got back down to bottom, we decided to try an easier ride out to the bluffs, where we walked to back on August 31, 2014. Just over 4 years ago. I remember the hike taking a lot of energy and me moving very slowly back then.

    I had forgotten about the beach full of pelicans that is on the way to the bluff.

    When we got to bluff this time, we had to take a couple of selfies back at the same place. As you can see, I’m a lot happier in the photo (actually, it looks like Scott is the one that clearly having more fun this time!)

    As you can see by the map, we have a lot more of Wilder Ranch to explore. Our highest elevation was 174m (although there were a few downs involved so we climbed more than that).

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