BC Becky

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

Category: Survivorship

  • Navigating the Side Effects of Trastuzumab: Finding Balance and Embracing Summer

    Navigating the Side Effects of Trastuzumab: Finding Balance and Embracing Summer

    I’m more than half way through my Trastuzumab (Herceptin) treatments – I’ve actually lost count. I think I might be 10 out of 18. Anyways, I realize that I’m have side effects from it. It is causing fatigue and making my joints ache. The side effects last just shy of a week and then I’m generally fine until the next time.

    I was told that there would likely be “no side effects”. I think this is said because the side effects are minor compared to the chemotherapy. If you don’t lose your hair, have nausea, or mouth sores, then the side effects don’t seem to matter – except that they do.

    I got tired of the side effects every three weeks. I asked my doctor to change the schedule to every four weeks – at least for the summer. I am hoping the longer time between infusions reduces the side effects as my body has more time to heal. It also makes my travel plans work out a lot better. It gives me a week at home after each treatment, so I can enjoy my travels without the fatigue and joint pain.

    After my last infusion – on a Wednesday at 2pm – I ended up sleeping most of the following day. I got up and had half a cup of coffee and realized I was too tired to do anything, so I went back to bed. I didn’t wake up until 12:30 when my phone was ringing. I went through ‘bouts of energy followed by hits of fatigue. It is frustrating.

    I am not out of shape, which is good. When I’m feeling well I can swim 1km and I biked 17km on my recumbent the other day.

    With the heat, the summer has started here. For me, I think summer will officially start on Monday evening when we fly to Iceland.

    Some things I’m hoping to do this summer:

    • Ride my recumbent to Mahone Bay and back (around 50km). I’ve done it on my eBike, but that is very different and a lot less work!
    • Stand up paddle board at least 10 times.
    • Swim in the Ocean (really swim, not just wade).
    • Boogie board – I’ll need to borrow one.
    • Do a 15km or longer hike (this is a stretch goal).

    Things that I already have planned:

    • Drive around and explore Iceland.
    • Visit Cape Breton (hike and visit friends).
    • StanFest
    • Folk Harbour Fest

    Oh ya, and I need to prepare my courses for the fall, as I’ll be teaching again – but in a new Learning Management System and AI has definitely affected on of my courses!

    What special things do you have planned for the summer? What is on your bucket list?

  • That dreaded 50%

    That dreaded 50%

    Fifty percent was a number thrown out there, related to recurrence after a regional recurrence. This was the first time someone threw a number out there and it had me unsettled. When I meet with my oncologist next week, I will talk to him more about prognosis. I’ve done some research, and 50% is on the better end of the numbers that I’ve seen. I’ve two things going for me – the length of time between my initial diagnosis and recurrence, and my age – both are indicators for better overall survival outcomes.

    The last few nights I’ve been really thinking about what this means. It isn’t that I’d die tomorrow if the cancer came back. Even with terminal breast cancer I’d likely be looking at several years – but they would be years with treatments – I’d be in forever treatment. My health would deteriorate and it will get more and more difficult to do the things I enjoy doing.

    When I was initially diagnosed in 2014, I couldn’t see past a three month horizon. It was over a year after treatment ended before I could start seeing more than three months ahead. That hasn’t been such an issue this time – at least until recently.

    The thing that I’m thinking of most now, is that I might only have one good summer left – or at least I can anticipate that this will be a good summer for me – for hiking and camping. I cannot guarantee that I will have more good summers – if the cancer comes back, then my health will likely deteriorate. It might sound pessimistic, but it is also realistic. The one thing that I can count on is that this should be a good summer for me health wise.

    And so, we will plan to have a good summer. We will also have a good spring – starting with the eclipse – we will get our van ready and make plans to go someplace – ideally someplace in nature for the eclipse. We saw a full solar eclipse a couple years ago that was so amazing. One of the things I enjoyed was being in nature and listening to how all the animals responded to the change in the sun. I would love to do that again in April.

    I might plan a trip to California in May. I had to cancel the trip I had planned in October due to treatment – so I have the credit on Air Canada for the plane ticket. I just need to decide when I want to go and book something. I’m waiting to see how radiation treatment goes before I make any firm plans.

    Then in June we are going to Iceland for almost two weeks. Iceland Air starts direct flights May 31. We will fly on a Monday and return a week and a half later on the Friday. We have booked a rental RV for the trip, so we can explore the country and camp. Although the latest eruption means we likely won’t be able to visit the Blue Lagoon, there are many other similar hot springs to visit. I’m looking forward to that being the real start of summer. Nova Scotia summers don’t really start until July.

    I hope to spend much of July, August, and maybe September camping around Nova Scotia. We were thinking maybe we would try to visit every Provincial Park. We have been living here for four years now, and have not spent much time seeing the province, and this summer was all about getting Treehouse built. Now that we live at Treehouse, we are hoping for a little more time to enjoy just being here. I’m looking forward to converting our van backing into the camping van – rather than a van for transporting various construction supplies or moving boxes. I miss sleeping in the van with my hubby and my puppy.

    And so, that 50% makes me want to seize the day. Carpe Diem.

  • May you live in interesting times

    May you live in interesting times

    Funny what happens when you Google a phrase. What I had thought was an ancient Chinese curse, turns out to be a 20th century expression with no connection whatsoever to China. Anyways, the Covid virus has me thinking that we definitely live in interesting times, from a curse perspective.

    So far, my husband and I are healthy. That is good news. I’m getting caught up on some of my outstanding medical issues – some dental work and I finish off my orthodontic work as well.

    Just before my last oncologist appointment, I did a bone density scan. It has been two years since I stopped Prolia and I wanted to make sure everything was OK. Unfortunate, it wasn’t. My bone density is back down to where it was when I started Prolia 4 years ago. It turn out that if you want Prolia to help build your bones you need to keep taking it, every 6 months for life. That is a lot to ask a young survivor!

    My oncologist recommended that I start Zometa – which is a different bisphosphonate and works differently. The biggest concerning side effect is that they can cause necrosis of the jaw, so they recommend getting any major dental work done before taking the medication. In this case, major means anything that affects the jaw bone. Fortunately, I’ve finished the orthodontist stuff and I didn’t need any teeth pulled, so I’m good to start Zometa soon.

    I am super nervous about this. Unlike Prolia which is an injection into the muscle, zometa is given directly to the vein – that is, it is an infusion that take about 15 minutes. It can cause hypocalcemia (low blood calcium) so they check your levels before the injection.

    Of course this led to another level of concern. I have had lymph nodes out on both sides. I generally do not do injections into either arm. I can do a simple blood draw on my right arm, but infusion is a concern. I asked my oncologist and they are saying it is OK to do the infusion in the arm. The other option is the foot which is painful but also finding a vein can be super challenging (my last surgery they had to be a line in my neck which really sucked). So, I’m going to go with the arm.

    Then it occurred to me, if I get the blood draw, then come back an hour later for the infusion, the infusion nurse will be unlikely to find a vein, as the “best” vein will have been used by the phlebotomist for the blood draw. I’m glad this occurred to me in advance, as they changed the type of appointment and now a nurse will put in a line to draw blood which can be used again an hour later (or whenever the levels come back) for the zometa. It means more time there, but one less needle stick.

    I’m not at all looking forward to it. The side effects can suck. The first is flu like symptoms for up to 3 days. This is not the time to have flu like symptoms. It is going to suck – but at least I’m spending most of my time at home anyways. The second sucky side effect is bone pain. This I do not look forward to. I had horrible bone pain with Neulasta during chemo. It is not fun. During chemo, Claritin helped with Neulasta bone pain, so I’m going to try it out for this. Unfortunately the other thing that really helped me was floating in the pool with my clothes on. That won’t be an option anytime soon as pools around here aren’t open (or are only open for serious lap swimming).

    OK this post is getting long. I’ll write another in a few days outlining the other ways I’m living in interesting times. Stay tuned!

    Feature image by Eric Prouzet on Unsplash.

  • 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.

  • 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 …

  • 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).

  • Are you your disease?

    My research looks at the first 35 weeks of my personal experience with breast cancer as I’ve documented it on this blog. A couple of the themes associated with my dissertation data analysis relate to learning about the disease and negotiating identity.

    I think that this graph is particularly interesting:

    screen-shot-2017-10-18-at-12-22-52-pm

    When I look at this, I see that I did most of my identity negotiating in the early weeks – shortly after being told I had cancer. I’m pretty sure that I’d see a peak again later – but my analysis ends shortly after my major surgery, so I’m not dealing with all the post-treatment identity negotiation stuff.

    What struck me as interesting here is that in the first few weeks after being told you have cancer you are also learning a lot about the disease. Your healthcare team spends a lot of time educating you about the medical aspects of the disease and the treatment options. You spend a lot of cognitive energy dealing with learning the medical stuff.

    The only really emotional aspect that I remember my healthcare team talking about is that I’d need to learn to find a ‘new normal’. As a result, I’ve learned to hate the term ‘new normal’. I rebel against it every time I hear it.

    But what about all the identity negotiation that comes along with identity. If your healthcare team is spending so much time talking about the disease, does this not give you the impression that your healthcare team think of you as the disease. Is that impression something that happens because at the time in which you are struggling with identity negotiation, your healthcare team are focusing almost entirely on teaching you about the disease itself?

    In a post a I wrote on a couple of days after being told I had cancer I wrote:

    I am now thinking, that once all the unimportant stuff in my life gets peeled away, the essence of who I am will rise to the surface. That has started now, and I expect that as the weeks progress I will find out more interesting things about who I am.

    I’m struck the strong influence my doctors had over who I was, and how at the time when I was seeing a lot of doctors, that I was also questioning who I was, and what this diagnosis meant to me.

    Am I my disease? No. But the disease did shape who I am today – there is no avoiding that.

    It has me wondering though, what can we do in those early days to better support patients who are dealing with cognitive overload around learning all the medical stuff about the disease while they are also having to deal with all the emotional and mental work that goes into negotiating identity and how that identity is fundamentally impacted by the diagnosis? Is there an ideal time, when there is a pause in learning about the disease, where the identity would could be done – as a way to help smooth some of the waves and chaos at that time? What support do you wish you had at that time? What else could you have handled?

  • Re-grounding

    I cried the entire drive home from my oncologist appointment on Monday. I’m not sure if part of it was that I also had my Lupron shot, so my hormones might have made me a little more emotional than usually. But at least part of it was that I felt like the ground was pulled out from under me.

    At my last oncologist appointment (5 months ago), I had asked about my change of recurrence. I didn’t like the number. I had hoped for a 5-10% number, but instead I got a 20-30% number. That shook my foundation. The mental tool I was using to hold back the fear of recurrence got disrupted.

    Monday I asked about hormone therapy. You see, I’m only partially on hormone therapy. I’m doing the Lupron thing, but not the AI thing – at least not right now. Last time I tried the AI it was a bit of a disaster. I lost 3-4 days of work because I couldn’t think. I had to stop.

    My oncologist talked generally about hormone therapy providing protection beyond the time you take it. They don’t really know why, but if you take it for 10 years, then the protective effect seems to be something like 15 years – so it lasts longer.

    He also talked about the importance of balance and quality of life. He said that if you are low risk for recurrence and have bad side effects, then the decision is easy – stop taking the meds. But, in my case it isn’t so clear. He grouped me in the high chance of recurrence group, but also horrible side effects. He did highlight that some people just cannot manage hormone therapy. They don’t know why it causes such bad side effects in some people but not others. He highlighted that it isn’t a sign of weakness on my part. I should not feel bad that I get horrible side effects. But the part of the conversation that through off my grounding was that of putting me in the high risk category.

    I also asked about neuropathy. I’m 2.5 years out, so this means that any changes will be small – that is, that I can not expect to have any drastic improvement from what I have now. So, my fear of the neuropathy being permanent seems to be the reality I’m destined to live with.

    My oncologist agrees that we should be introducing one change at a time. In the fall I’m going to be changing my mental health/side effect meds. The change will hopefully also help with neuropathy and arthritis back pain. Once that change has happened, I’ll again look at re-introducing the AI (aromatase inhibitor – if you think of menopause as a reduction in estrogen levels, the AI brings the estrogen levels even lower – and since my cancer was fed by estrogen this in effect starves it). There is some hope that the new mental health med will make it possible for me to introduce the AI with limited side effects. We’ll see.

    But all this has left me in need to reground myself. Hearing the “high risk” makes it more difficult for me to think about the future is a positive way. On the other hand, it also reminds me of Carpe Diem – and the need to focus more on the here and now.

    I’m also feeling strong at the moment. I biked 30km yesterday. I haven’t been able to do that in a long time. A couple weeks ago we hiked 10-miles. Again, that is a huge accomplishment. So, physically, I’m starting to feel strong again. I just need to find my grounding mentally.

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