BC Becky

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

Author: Becky

  • California 2024 – Hiking

    California 2024 – Hiking

    I’ve been in California for the last few days. I had great aspirations of hiking the day I arrived, but I was so tired. I hadn’t slept well the night before, then needed to be at the airport for 3:45 a.m. and then didn’t sleep well on either flights, and throw in a 4 hour time change, and … hiking wasn’t in the cards for that day.

    I did manage to get our for hikes on Thursday (by myself) and Friday and Sunday with my friend Cara. It has been a great trip so far. It has been so good for me to be with my California friends a this time.

    Yesterday was a celebration of life for my friend Lilani. It was great that I was able to be there. I spent almost the whole time crying, but it was wonderful to be see just how much of a bright light she was in this world. I also got a chance to visit with several more of my BAYS friends (Bay Area Young Survivors). It has been really good for my mental health.

    My first hike was to the lookout at Villa Montalvo. I blogged about that hike back in February of 2020. It was a great place to start. I was hiking alone and I found myself in a contemplative space. Each of the signs allowed me to reflect on different things as a slowly climbed the hill to the lookout. It was more of a struggle than I expected. It was a good first hike for this trip.

    On Friday, Cara and I hiked the upper portion of Rancho San Antonio which was a new hike for me.

    Today (Sunday) Cara and I hiked at Steven’s Creek Park. It is one of my favourite hikes. It also was the furthest (>5km) and longest (2hr) hike I’ve done since before chemo, and I feel great (yay).

    One thing that made today’s hike special was that there were so many wildflowers. I hope you enjoy the photos.

  • Forgiving my body again

    Forgiving my body again

    Back in February 2016, I wrote a blog post about forgiving my body. I just re-read it and it still resonates with me.

    At a recent writing workshop, I reflected again on forgiving my body. Here is what I wrote:

    I had forgiven my body for the cancer that grew it – for it trying to kill me. But now I don’t know what to think. Do I need to learn to forgive my body again for growing a new round of breast cancer?

    Forgiveness is a form of healing, of letting go of the pain. I think I can do that. I can forgive my body for growing a mutated version cancer that I had over eight years ago. I can thank my body for remaining nimble and not limiting my range of motion, even after radiation, for ensuring that even when I was low on energy, I had enough to go for a short walk with my puppy dog. I can forgive it this time!

    But if it happens again, will I still be able to forgive my body? Will my body deserve being forgiven if it keeps bringing cancer back?

  • Accomplishment versus joy

    Accomplishment versus joy

    My therapist asked me, how much time I spend on “accomplishments” rather than joy. I have been so focused on “doing things” that made me feel like I had accomplished something, that I wasn’t spending any time focusing on things that bring me joy. She encouraged me to try setting up my days so that I have a balance of accomplishments and joy.

    What brings me joy? A lot of things, but the problem is that I’m not getting joy from them – or not to the same extent. My happiness emotions are definitely muted, where my sadness emotions are on overdrive.

    Things that bring me joy include:

    • a bike ride on a warm spring/summer/fall day
    • paddle boarding and then swimming on a freshwater lake
    • a hike in through interesting natural areas (forests, coastlines)
    • a walk on the beach with Cali, watching her run after the ball
    • baking for others
    • entertaining (e.g., having people over for supper)

    Yesterday I had a pretty major sadness meltdown. I started the day with preparing the baseboards in my hubby’s office so that they could be painted. This turned into a much bigger task than I thought as many of the finishing nails were not in all the way, so I had to do a lot of pounding in of nails before I could spackle. It took everything out of me. My body was sore, especially my knees and the tops of my feet from kneeling, but also my back. I was exhausted from the effort, dripping with sweat. When I finished, I took a shower and laid down to watch some TV. Physical effort and exhaustion from such a minor task made me feel really sad. I felt like my body wasn’t letting me do the things I want to do. I was generally feeling sorry for myself, and I was doing a lot of crying. I felt like curling up into a ball and sobbing, which is pretty much what I did, for at least six hours if not longer.

    Today I thought more about joy. I had been wanting to get out for a bike ride for a while, but the weather hasn’t quite been ready for it. Having previously reduced the inertia required by ensuring my tires were pumped up, I went out for a ride. I’m not sure how far I rode as my watch died after a couple of minutes of riding. Probably around 20km, which seems impressive until you find out that I was riding my electric bike. Either way, I was out for an hour and enjoyed being on a bike again. I’m looking forward to a time when I’m feeling strong enough to ride my recumbent again. The tires are pumped up and ready for whenever I want to take it for a spin. I just need to feel strong enough for it. It requires quite different muscles to get started. It would be much better on my lymphademia filled arms, but without the electric assist, I will need to do all the work myself!

    I also spent some time at the old house digging up plants to bring to the new place. I’ve particularly been enjoying digging up various flower bulbs (mostly tulips and daffodils) and transplanting them to here. Even if they die off this year, there is hope that next spring my garden will be filled with flowers. I am hoping that one day I will look out my windows and see flowers on both sides of the condo.

    And then, while making dinner I also made some cookies – almond flour, peanut butter, carrot, chocolate chip cookies. It is a new recipe that I hope turns out. I’d like to give some of them away to show things for some of the work one of my neighbours did to finish up hubby’s office. It is now fully painted and ready for him to start moving his stuff out of my office and into his office. That will make me feel better, as then I will have my own space so I can setup to do my podcast again. I’m thinking of my podcast as a way to get my mind back into instructional design and into what’s happening with AI in that space, so that I’m read to go back to work in the fall.

    Today I tried to work on my joy list. My accomplish list is much lower today because I chose to focus on the joy list. I do feel quite a bit better today than I did yesterday.

    Tomorrow and Tuesday may need to be more ‘balanced’ days with some accomplishments as well as some joy. I’m hoping most of my time in California (a week) is spent on joy. I’m looking forward to seeing my friends again. We definitely have some joy planned!

  • Can I call myself a writer …

    Can I call myself a writer …

    if I don’t write?

    I’ve been thinking about that a lot lately. I’ve been reading Wil Wheaton‘s book “Still just a geek”. It has reminded me to write more regularly, but it has also encouraged me to work more on my next books (I have two in the works). His writing encouraged me because I’m sure I can write just as well. Now I don’t have any “celebrity” so I don’t think my books will sell much – I definitely need to do more ‘marketing’ of my book. Now that it is available on a website that isn’t Amazon, I could choose to buy some Google Ads for the book. I would be very specific and use the search words “breast cancer” and “memoir” such that the person who typed those two words would learn about my book – that would really help increase sales.

    Anyways, I’ve decided to spend more time writing. I will make an effort to spend at least one hour per day writing. This won’t necessarily be something that I share – in that I might just write in one of my personal journals.

    Other than the book, what else has my inspired to write is a workshop I’m attending put on my April Stearns of Wildfire magazine. I attended the first workshop yesterday. It really helped me get back into writing and some of her prompts have given me an anchor point onto the page. It also felt a little like one of the support groups I’ve been craving. Since Wildfire is about the experiences of those who were diagnosed young, it would make sense that sharing time and stories with this group would feel like a support group. It is exactly what I need right now, as it is helping me move forward with writing practices.

    One of the prompts was “what I expected? what I got?” That brought out a interesting series of questions that I was asking myself.

    I expected that I had already gone through my ‘mid life crisis’, and yet I find myself needing to reinvent myself yet again. Who am I after this cancer experience? How do I bounce back from it? What are the essences of my life? What is my legacy? and why do I care about legacy?

    I find it interesting that I was thinking about legacy – and it brings up the question “why do I care about legacy”. In some ways, legacy helps with the idea of not living a long life, because then something of me will be living on. The world that remains will see my ‘footprints’ in my blogs, my podcast, and my books – oh ya, and my Masters Thesis and various obscure academic publications.

    My legacy will be of someone who:

    • helped to build Treehouse Village (although I think that is really more of Scott’s legacy)
    • wrote a book or two about her breast cancer experience
    • wrote a book or two about her 16-month bike trip around the world without airplanes
    • wrote a textbook or two or three or more about instructional design
    • hosted a podcast about instructional design
    • blogged about her travels, her cancer journey, and her lifelong learning journey

    I hope that I will also be remembered as a kind, generous, and thoughtful person.

    I then ask myself, what parts of my legacy need work? What other things do I need to achieve to make my life feed complete?

    I’m definitely having a “mid-life crisis” (or “later-in-life crisis”). I am feeling that I will need to rebuild myself again, and I’m not sure what I want that ‘new me’ to be.

    In the fall I will go back to work. I’ll actually start working in August, as I have a lot of prep work to do for the two courses I’m teaching. I know from experience that there isn’t a lot of use in doing it too early – as I will forget what I decided to do – so better to be teaching closer to the time I made the decisions.

    I guess that is another part of my legacy – all the students that I have taught and who remember me as someone that pushed them to learn, and helped them realize that they can do more than they thought. I continue to keep working at uMass because I love teaching and I love teaching the students in the instructional design program. Imagine small classes where everyone is there because they want to be and they are eager to learn new things. Yup, that is why I love my current job.

    One of the things I know I want to be in my legacy is the work that I have done and do in writing. That encourages me to get back to finishing a couple of books. The Going East book is particularly interesting one, and one that I had regretted not doing when I had my first cancer diagnosis. I’ve done more work on it. I’m putting it all together and hopefully someday before I die, I publish the book(s). I cannot get it into a single book, there is just too much write about – too many stories. I just need to figure out what reasonable sized books are, and then where there are logical places to break things up.

    So, I guess, I want the biggest part of my legacy to be about me as an author, which means I need to do a lot more writing!

  • Halfway

    Halfway

    I am halfway through my trastuzumab (Herceptin) a type of targeted therapy drug called a monoclonal antibody. This is the magic drug that kills HER2 breast cancer. I am due to take 18 doses, 3-weeks apart. That works out to a full year. Since I just completed 9 of 18, I will be doing this treatment until sometime in October.

    I wasn’t that happy to hear that I’m only 1/2 way through. I’m getting ready to be done with it. I realized the other day that the stiffness and soreness of my joints is caused by the treatment. I am worst the first couple of days after treatment.

    I’m also going through some chemo aftershocks. My skin, my hair, and my nails grow to a pattern related to treatment. Every 6 or so weeks, I end up with severely dry skin on my heels and on my hands. I also find that my fingernails are weak and brake or crack easily. Today, I experience another one of these side effects – my nose started randomly running again. This is a thing that happens when you lose the hair in your nose. There is nothing to hold back the drips. Ugg.

    I did get some good news from the nurse – and that is that I would only need to access or flush my port every three months. This makes the decision to keep the port easier. Unlike the last time, when the port was getting in the way of reconstruction, this time the port isn’t in the way of any treatment. It means that I’d need to do another procedure to get it removed, and then I would be without a port if I needed it. I also use the port for various scans (CT, Mugga, MRI), and I expect that I’ll be getting some regular scans at some point. With signs of lymphedema on both arms, I’d rather not risk an IV if there is any way to avoid it. The port is generally the answer.

    I talked to my oncologist this week as well. My Mugga scan came back good and so I’m good to go to finish of the trastuzumab treatments. Only after those are done will we talk again – and at that point we will talk about hormone therapy and surveillance plans. Given that the cancer was found first by repeated abnormal blood tests followed by a CT scan, I’m not sure how they plan to check me.

    I was happy to learn that I don’t need to worry about any of that until after the summer is over. Right now I want to focus on having fun this summer and on finishing off the trastuzumab treatments.

  • Not growing old

    Not growing old

    If you were here you would notice that I’m constantly doing something. Even when my body is hurting, I find something to do. Until I enter a drug induced sleep at night, my mind and my body are doing something.

    I feel like I always need to be doing something.

    It occurred to me today, that this need to be doing something is because I feel like I need to be living, and when I stop to rest or take a two hour nap in the afternoon, I’m not living.

    I also have the sense that I’m not going to grow old.

    I remember telling a friend, and this was before my latest bout with cancer, that I likely would not live as long as my puppy (this was when Cali was still new to us). My friend was somewhat shocked with that statement, but it is something that I have felt for a while.

    When I think about it, I’m not really sad about it. It just feels like something that is. It does make me sad sometimes when people are celebrating their later years. It would be nice to have lived that long, to have that much life. I’m also sad at the thought that my husband will need to grow old without me.

    Neither of my parents lived into their 70s.

    The sense that I will not grow old, re-enforces the sense of needing to live every moment I can.

    I can say that so far I have had a quality life. I’ve had so many great experiences. I am hoping to have more great experiences in the time I have left. I don’t really have any ‘bucket list’ items.

    I need to slow down a little. I need to let my body finish healing.

    I’m frustrated at the pace of my body healing. Last time, I had a huge surgery and a long way to recover, and yet it felt like it went quickly. I felt like every day I was getting better. With how I’m feeling now, I have no sense of healing. I have no idea if what I’m feeling is a result of radiation or lingering chemo side effects (e.g., every three weeks my heals get really dry and sore – this was a side effect of one the chemos I was on).

    Mostly I’m feeling strong and like I’m doing well – but then I get hit with fatigue or tired and a need to nap. It seems that the way I heal from radiation is napping.

    One of the challenges I’m have is endurance. I get tired quickly and I start sweating quickly. I’m going through multiple changes of clothes every day. Since I need to feel like I’m doing something, I do things like painting the walls in my husband’s office, and the work causes me to sweat. It shouldn’t. It isn’t really that physically demanding, and yet I start to sweat.

    I need to slow down a little. I need to let my body finish healing.

    I need to give myself permission to not “live” every moment – and let myself take moments off to just rest. It is OK to not be busy doing things all the time. I can write that, but I don’t really feel it. Inside I still feel the need to do something – tonight’s something is putting together an Ikea buffet. I’m tired but I need to finish it or at least unpack a few more boxes – this cabinet came with so many different boxes!

    This rambling blog post has three key things I want to communicate:

    (1) I’m getting tired quickly/easily

    (2) I need to be doing something all the time

    (3) I’m not going to grow old.

    I need to slow down a little. I need to let my body finish healing.

  • Then and now

    Then and now

    I have been diagnosed with breast cancer twice.

    In 2014, we had just moved to California. We had no support network. It was just my husband and myself.

    This time, we live in a cohousing community and have support from my neighbours.

    In 2014, we lived in the South Bay Area near San Jose.

    This time, we live in a small town in Nova Scotia Canada.

    In 2014, my diagnosis was quick. Within a week of reporting the lump to my doctor I knew what kind of cancer I had (bilateral hormone positive, HER2 negative in both breasts).

    This time, it took months to finally get my diagnosis, a lower level of hormone positive and HER2 positive.

    In 2014, I knew nothing about breast cancer and had to do a lot of learning.

    This time, I knew what things meant and was able to anticipate the recommended treatment options. I knew what to expect.

    In 2014, I had to choose where to get treatment.

    This time, I already had an oncologist and there was only one surgeon in the small town where I live.

    In 2014, I did chemo first.

    This time, I had surgery to remove the cancer before I knew exactly what kind of cancer it was.

    In 2014, I had access to several different support groups.

    This time, there isn’t a support group. I had to reach out to find an online healing circle which isn’t quite the same as having a local support group.

    In 2014, I had to bring my own food to chemo.

    This time, they fed me during chemo.

    In 2014, I went to a large chemo centre where the warm blankets are hospital blankets.

    This time, I’m in a small chemo centre where the warm blankets are fleece or knitted blankets in a variety of different colours.

    In 2014, I did not need radiation as my nodes were negative and I had a double mastectomy.

    This time, the cancer was in my lymph nodes, so radiation was required.

    In 2014, I did a what felt like a lot of chemo (4 rounds of AC, 12 rounds of T but ended early at 9 rounds).

    This time, chemo was shorter (4 rounds of TC), but I am also doing Herceptin every three weeks for a year.

    In 2014, I was obsessed with what was happening with my hair – both in the process of losing it and the process of it growing back.

    This time, I didn’t really care. I had some fun with my neighbours colouring and styling it before it fell out.

    In 2014, I lost ALL my hair.

    This time, I didn’t get to a point where I lost all of my hair.

    In 2014, my husband came with me to all my appointments.

    This time, the chemo centre is so small there is no place for him to be, so I went alone.

    In 2014, it was a half hour drive to the chemo centre.

    This time, it is a 5 minute drive to the chemo centre.

    Both times, I felt like I was getting the care I needed. I’m glad my initial treatment was in California, and I’m glad that this treatment has been in Canada. I feel like in both cases I was in the right place.

  • Physically, I’m doing well – Mentally, not so much

    Physically, I’m doing well – Mentally, not so much

    I wasn’t sure what to write about anxiety. It is really difficult to explain.

    For me, it becomes a compulsion to be doing something, which is why I’ve had a hard time taking a rest. I feel like I need to be doing something all the time, otherwise I’ll spiral down. If I can keep my mind occupied, then it doesn’t have a chance to spiral.

    It means that I’m overly sensitive and often on the verge of tears. It can be something trivial that sets me off.

    The other day at the grocery store I ran into someone from boxing. She asked how I was doing. Physically I’m doing great, so I often say I’m doing well. I told her that I missed boxing but it is unlikely I’ll be back anytime soon because of my lymphedema. That brought me to tears. I held them off long enough to get checked out, but was crying when I got into the car. It is hard to explain, but I miss the camaraderie at the club.

    Physically, I’m feeling strong again. I walked 4 km on Crescent Beach on Saturday. I don’t remember the last time I could walk the full length of the beach – it was before treatment. Unfortunately, after that I crashed and spent the evening sleeping. Maybe I was pushing it.

    I went swimming today for the first time since chemo. It was nice to get back in the pool. I actually swam more than 500m, which is more than I expected for my first time out in months. Yesterday, I started the day with a boxing routine on my Quest (virtual reality boxing). I felt great doing it, but my normal exercise rush wasn’t there – or it was muted – as was my rush from being in the pool. Exercise usually makes me feel really good, especially when it is strenuous – but I’m not getting that same feeling. The feeling is muted.

    I remember the struggle and the breakthroughs from the last time I went through this. I’m not having the same anxiety – in that it doesn’t feel the same. I’m numb to the fear, which is what I had the last time. I’m not numb to the loss. Loss weighs heavily. Boxing is one of the losses. The rest of me feels like things should be normal. I don’t have the same mental losses – the loss of innocence, the loss of physical body parts. There isn’t as much loss this time – I didn’t even lose all my hair!

    I am super sensitive to not being (or the sense of not being) appreciated for all the work that I’ve done. It is so demotivating when someone wants to just throw it away without acknowledgement of the past work. I’m also afraid that my work won’t be as rewarding next semester as it has been in the past.

  • From Fatigue to Fear: The Unseen Battles of Post-Treatment Life

    From Fatigue to Fear: The Unseen Battles of Post-Treatment Life

    With the end of active treatment comes the anxiety and depression that I have been suppressing throughout. The fatigue from radiation has me worried about depression. The nightmares make me concerned about PTSD, and the crying, well, that is the only way I can cope right now.

    I was reminded of a concept I learned at Commonweal about ‘fantasy future’. That is, we all have a future that we fantasize about, and in reality, that future never turns out exactly how we imagined it. But we cling to some form of fantasy future – and then cancer comes, and it shatters that fantasy. You need to mourn the loss of the fantasy future. The fantasy itself is what is shattered – that is what needs mourning.

    Today, I am sad. I hope that the radiation fatigue is what is causing these swells of emotion.

    I’m also thinking a lot about the future. One future is that I don’t get cancer again, but there is another that weighs heavily on my shoulders, which is a future where the cancer does come back. It weighs heavily on me that my parents died young. With each year that passes, I get closer to the age my mother was when she died. It doesn’t give me much hope for living a long life.

    I need to remind myself that for this week, and maybe next, I’m still feeling the side effects of radiation. Being tired and fatigued causes me to spiral downward. Once the radiation fatigue passes, I hope that I will be doing better. I will still be mourning my fantasy future, but I won’t be doing it from a place of tiredness, which I know makes my depressive symptoms much worse.

  • And then there was one

    And then there was one

    Tomorrow will be my last radiation treatment – yay. So far I’ve managed without too much skin irritation (yay again). The doctor did mention that things could get worse or better over the next couple of weeks, but within a month I should be fully recovered skin wise as well as internally, which affects fatigue. She cautioned that it will take time to rebuild my stamina, but that is no different than any other insult to the body.

    In case you are wondering, this is what the machine looks like. I lay down in it with my hands over my head in the arm rests. The radiation techs align my tattoos with the various green lines in the room. The machine goes around me, first doing a scan, and then when they are sure things are lined up, it goes around again giving me radiation. For radiation, it is starts at about the back of my shoulder (shoulder blade) and then goes around to my neck, then back down again (so two passes). Then it is done. The whole process takes about 10 minutes, with about 7 of those minutes being the techs lining me up perfectly.

    Radiation Machine

    I’m glad that it will all be done. In the US, when radiation treatment is finished you get to “ring the bell”. That isn’t a thing here. Instead I decided that eating cake was appropriate – but then in conversation with a neighbour we realized that lots of people in the community have bells – so I invited people for cake and encouraged them to bring a bell – so I could ring many different bells.

    What I really enjoyed the last weekend I was home was all the short visits I had with my friends and neighbours. I got to see many different people and catch up on how they were doing. It was something I really missed during chemo when I was mostly staying away from people. The extrovert in me was very happy for all the visits. I’m looking forward to continuing that.

    Now I get to spend a month or two healing before we start talking about the next phase of treatment. I’m still doing Herceptin (denosumab) every three weeks. That will continue until the fall. The next phase is hormone therapy, which I’m not looking forward to, but I’m also not really thinking about. I get to have two months of no additional treatments to recover from chemo and radiation. I plan to take that time to get back to regular beach visits or hikes with my puppy who I cannot wait to snuggle with when I get home tomorrow.

css.php