BC Becky

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

Category: Emotional Journey

  • 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.

  • 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!

  • My mantra

    I thought I would share my mantra with everyone here. Anytime I get a new ache or pain, I repeat to myself “In the absence of a diagnosis, I am healthy”.

    This really helps when I am going for a scan or a doctors appointment that is triggering anxiety.

    Currently I’m OK. I have some new lower back pain, so I’m getting an MRI to rule out anything – but I don’t think it is anything other than arthritis acting up. My first reaction to a new ache or pain is to think of a non-cancer reason for it, because more than likely there is a non-cancer reason for it. Then when that little voice inside says, “but maybe it is …”  I repeat to myself “In the absence of a diagnosis, I am healthy”.

  • Regaining confidence

    I realized the other day that one of the things I’m struggling with right now is self-confidence. After cancer, I had a don’t care attitude that allowed me to not worry about things. That gave me a confidence and strength to tackle things. Over the last year, I’ve lost that.

    I realize now that I need to get it back. I need to peel away the impostor syndrome and regain my sense of knowing what I know, but also knowing that I will never be the expert on everything – that I will always be able to learn from others, but that learning from others doesn’t take away from the expertise that I also have.

    It is a weird sense, but I need to remind myself that I should not care so much about what I think others think of me, rather, I should just be me and share what I know with a sense of self-confidence, because what I do know adds value to the conversation.

    It is weird, but this term, listening to the background of all my students, it is intimidating. I worry that they will think that I don’t know what I’m doing – or that I don’t know much – and then I realize, this is exactly the type of thought patterns that I do not need. My job and passion is to design and to teach. I can share what I know, with the understanding that everyone has different perspectives and we all have something to share. I don’t need to be the expert in everything – but also that I do bring value to the table.

    And so, I need to stop worrying about what others think of me. This is something that I was able to do easily after cancer, and it is something that made me a better teacher. Now that I realize that what was sneaking up on me was my old sense of impostor syndrome, that I can now put that aside and get back to being the teacher that I am.

  • And alternative CV #unboundeq #altcv

    I have been reflecting on the alternative CV activity in the Equity Unbound course for over a week now.

    I tried to do something visual, but that just wasn’t working for me.

    I found myself asking, what are my values? Or, what am I most proud of? Right now that answer is that I was seen as a good caregiver and a good friend. Those mean the world to me. So much more than any academic credential.

    I’m trying to figure out how to look forward, and figure out what I want my new CV to look like. I’m still working on self-care, after a traumatic 5-months of caregiving.

    Another blog that I follow, asked the question What is your greatest strength? I too have been thinking of this. What comes to my mind immediately is cooking. Again a form of hospitality, a form of caregiving.

    Now, for the alternative CV, I want to link those values to what I do – which is teach. I see now that is an important part of my teaching practice is hospitality. It is making students who are nervous or uncertain feel comfortable, and then building up their self-confidence. When they leave my class, I feel like I have succeeded if they leave with a sense of pride and amazement of what they achieved. It is they that did it, not me. I simply gave them the opportunity to demonstrate their potential. I love that.

    I’m still figuring out what I’m going to do with my life now, but I’m moving forward. I’m working on some self-care. I’m teaching again and loving it. It still feels like every day I’m lifting sandbags, but with each day the bags are getting lighter, and I’m moving just a little bit faster.

    Perhaps, that is my greatest strength – tenacity. Sometimes progress is slow and frustrating, but I keep going – and with that, I’m headed out for a hike ?

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