BC Becky

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

Category: recovery

  • Quality of life #patientchat

    Quality of life #patientchat

    I stumbled onto #patientchat on twitter yesterday where the conversation was around quality of life. My first reflection was that it was something I didn’t really think about – quality of life wasn’t on my radar before cancer.

    It isn’t that I didn’t have health issues before cancer, just that I didn’t have to undergo treatments that reduced my quality of life. I didn’t have to make decisions where my treatment decisions would directly affect my quality of life.

    When I hear those words “Quality of life” it brings back a very specific memory. I remember walking along the the Guadalupe trail (the path behind our condo) mid-way through my Taxol chemotherapy (the second drug). I was struggling with the side effects of the chemo.

    The drugs had effected my ability to process visual cues, such that I could no longer drive. I also had neuropathy that was causing pain in my feet. And fatigue. Overall I felt pretty crappy. I remember thinking that if this was my life I don’t want to continue treatment. The thought had with it a tinge of fear – the fear that I didn’t have much more strength to continue fighting, and yet I knew it was temporary, and that gave me the strength I needed to keep going. One might think that this sounds a lot like depression, but it wasn’t. It had more do with with quality of life than it did with sadness. I could deal with it because I knew it was temporary. I would get better. I just didn’t want it to be my every day. It was the first time that I truly appreciated the idea of making treatment decisions based upon quality of life.

    Now I find myself in regular conversations about quality of life. These are conversations that people who have never had to face these decisions can understand. They think that they would just keep trucking along, doing whatever treatment was recommended. But the reality is, when you get into it, there is a certain time when quality considerations take over. This is even more the case when it is the difference between a prophylactic treatment (e.g. hormone therapy) to reduce a potential threat (recurrence) versus a known hit to quality of life. There is no one right answer to this choice – and chances are, if you think there is only one answer, then you haven’t been put in this position.

    For me personally, I tolerate side effects for as long as I can. When they get to be intolerable, I try something new – or I stop, I take a break. I don’t beat myself up for it. I don’t look back on the decision either. I remind myself that you cannot change the past – but also that I know at the time I made the best possible decision I could. The side effects clearly got to a point that I could not hack it, I just needed a break. If that turns out to bite me later, so be it. The reality is, that sometimes quality is more important than quantity.

    I have made other such choices in the past. I am reminded of round-six of taxol. I went into my oncologist’s office on Monday and refused to go to chemo that day. I had had enough. I needed a break. He, of course, convinced me to go back on Thursday, and perhaps add one more week after that … which turned into two more weeks after that. Just enough to get me to the time when we could do the first surgery. I don’t look back on that with any regret. I remember just how miserable I was. I remember that walk along the path and the thought that I just couldn’t live like that.

    All I ask is that when someone says “I stopped for quality of life issues” that you appreciate that it is something that only the person experiencing it can truly understand.

    Feature Image CC0 via Pixabay

     

     

  • My weekly tri

    My weekly tri

    Now that I’m coming back from a slew of injuries, I’m trying to get my self back into shape. After my swim yesterday, I was also reminded by how much I actually enjoyed getting out and swimming. It wasn’t about getting fit so that I could do the things that I enjoy, it was much more that I actually enjoyed what I was doing.

    I’ve decided that to help me keep motivated, I’m going to report on my weekly tri. I’ve always wanted to do triathlon. I actually did one once – it was a winter tri (skiing, skating, and running) on my 40th birthday. I finished. That was the triumph. This time I’m taking a little different approach. I’m going to report on my weekly totals, mostly in three key sports: (1) hiking/walking, (2) cycling, and (3) swimming. So it is sort of like a triathlon except that I typically only do one sport in a given day.

    If you want to join me in this weekly exercise challenge, please leave a comment with your weekly “tri” statistics.

    (1) hiking/walking – hiking in Alum Rock park – 3.7 km hike

    (2) biking – 15.5 km (need to find a nicer place to bike)

    (3) swimming – 64 minutes / 1 mile (1600m)

    PS: I wish there was an app that allowed my various tracking devices to sync and give me a single report with all of them together. At the moment I’m using Runkeeper to track my hiking/walking & biking and my Withings watch tracks how long I swim. For distance I count laps. I almost always swim 1 mile. I’m not swimming any longer because it already takes an hour and I’m usually swimming outdoors mid-day, so the sun exposure isn’t great.

    What was your weekly tri? (or activity)? How do you keep yourself motivated to get out there?

    Feature image by www.sportshop-triathlon.de (https://www.sportshop-triathlon.de/) [CC BY-SA 4.0], via Wikimedia Commons

  • Finding a parking space

    Finding a parking space

    As I pulled into Costco today, it occurred to me that I didn’t know where to park. This repeated itself for each errand I had to run today – Costco, Sprouts, the gym … Since shortly after moving to California, I’ve been going through breast cancer treatment and recovery. And shortly after starting treatment I asked for an  ADA (handicap) parking permit. I was very glad to have the permit when chemotherapy fatigue started to settle in. It made the difference between doing an errand or two and not doing them. Then when neuropathy pain because a problem, again, I was very glad to be able to use the permit. That permit expired yesterday, and this time, I finally feel well enough to not renew. I’m not fully recovered. I still have some signs of neuropathy – but it is not nearly as bad as it was. This is a huge stepping stone in my recovery. It does, however, mean that where I am used to parking is no longer available to me. I now need to figure out new strategies for finding a parking space!

    Feature image by Steve Johnson available at: https://www.flickr.com/photos/artbystevejohnson/4610457832

  • Imbalanced …

    Imbalanced …

    I wonder, if balance is a verb, is imbalance the opposite? Or just unbalanced? One of the things that I am realizing (or re-realizing as I seem to make this reflection over and over again) – is that I do not understand my bodies cues. The things it used to tell me, the indicators that I need to slow down – I am not really getting them.

    After many days of renovating, and packing, and squeezing everything in, my body finally said enough. On Saturday morning at 8am, (we moved on Friday), I developed a whole new kind of chest pain. This was chest pain that I had never felt before – sort of like a heart burn only it wasn’t. It came in waves, and after about the third wave I got up from my desk and walked over to Scott in the back room to explain what was happening. Then another wave hit – and I said “I think I need to go to urgent care”. We quickly got our stuff together (searching for iPads so that we’d have something to occupy our time), and hopped in the car. The waves of pain continued, so rather than going to urgent care, I suggested we go to Emergency at El Camino Hospital (about a 5 minute drive away from the PAMF urgent care). As we arrived, Scott pulled up the car and escorted me in. He had to get a wheelchair for me, as the waves of pain had me afraid to walk. With each wave of chest pain came shortness of breath. It was truly horrible. When we told the receptionist that I had chest pain and shortness of breath, she paged the EKG tech. Within a minute or two (enough time to sign a few papers), someone was there escorting me to a bed. I laid down on the bed and immediately had another wave of pain. She hooked up all the leads, and everything seem to calm down. We waited five minutes and everything was fine. It was long enough to validate that I was not having a heart attack.

    Then we waited. I’m not sure how long, but not too long. I was seen by a triage nurse, then we waited some more. The El Camino Hospital Emergency Room is a rather quiet place. Even when busy they are not crazy like Stanford. It was spit and polished clean, and had a very calming atmosphere. It didn’t feel like an emergency room at all. Eventually we were escorted back to a room (a private space – again very unlike Stanford). Someone took my vitals – my BP was slightly elevated but not terrible. I saw the physician assistant. They drew some blood. We waited. Eventually I was told that it didn’t look like a cardiac problem. This was intended to help relieve me. It had the opposite effect. You see, after cancer, everything, if it isn’t something else, looks a lot like cancer. If this wasn’t a heart issue, then what was it? At one point, I looked over to Scott and said “I don’t know what to hope for?”  We thought maybe a blood clot? We could not figure out what the least probable cause could be.

    They took a chest x-ray. That too came back clear. We did a second round of blood tests – while they kept me under observation – everything was fine. Knowing that the x-ray was clear relieved a little bit of my concern. Certainly, if it was cancer, it would should up on the x-ray wouldn’t it?  Eventually the doctor came in and examined it to me. He explained that my pain was all exterior chest muscle (so not heart or lung related). That it was likely related to over-exertion. That is, all the heavy lifting I did the day before during our move (compounded by all the lifting I’ve been doing the last two weeks while we worked on the floors). The doctor’s message was that I needed to do a better job of taking care of myself. He said that the good news was, that the treatment for this was all within my own hands. He recommended Physical Therapy but also that I take a yoga class or some kind of exercise class where I do more stretching. That I needed to stop skipping my swimming because I was too busy renovating. Message heard!

    And with that, we returned back the grind that is home renovation and moving out. My hubby got the brunt of it, in that he had to do a lot more running around and finishing up the old place. I’m paying a lot more attention to how much I’m lifting. I’m becoming more and more aware that my body doesn’t give me the same cues it did before. I don’t know that I’ve overdone something until something crazy happens – like severe chest pain – I just don’t know when to stop.

    And this brings me back to balance is a verb – and imbalance is the anti-verb – and right now I need to recover from some imbalance so that I can get back to that balance state!

  • In a bit of a funk

    In a bit of a funk

    I find myself wondering if it is the weather. It has been raining most afternoons for the last week and a half or so. I’m finally able to walk and get out and exercise, but doing it is a challenge when the weather isn’t participating.

    I’m also watching my friends defend their dissertations. I’m happy for them. I know just how much work is involved in getting to that point. A doctoral program is a huge investment in time and energy. It is a huge accomplishment that I’m happy to be celebrating with my friends. But on the other hand, it is reminding me of just how much more I have to do. It is reminding me that I’m behind. That I took 16-months off (really more than that, as I pretty much stopped in May when I was diagnosed, but the way the semester system works I was registered until August. So, I was away from it all for about 18-19 months.

    The restart has been good for me. The cancer experience has given me a new passion to help me focus my research. I’m excited about the project I’ll be leading. I’m looking forward to the writing that will take me from where I am to finishing my PhD.

    But these last two days I’ve been in a bit of a funk. I’m trying to figure out what will pull me out of it. I’ve called on a friend to go out to lunch. Perhaps that will help. I don’t know. I just know that I need to bounce back. I need to bounce back soon.

    It looks like few have a few more days of this dreary weather ahead of us – but by mid next week the sun will be back. I will look forward to that and try to get ahead on some of my work so that I can enjoy it when it happens.

    In other news, we are expecting to close on the purchase of a new place (a manufactured home) next week. It needs some renovations – but I’m really looking forward to moving into the new space and creating a real home out of it. Stay tuned for photos 🙂

  • I forgive my body

    I forgive my body

    One of my struggles this last year has been dealing with loss. I’ve been sad about all the things that I felt that cancer had taken away from me. I felt a deep sense of loss that I was reminded of regularly.

    Time passes unhindered. When we make mistakes, we cannot turn the clock back and try again. All we can do is use the present well.
    ~ Dalai Lama

    I struggled with a sense of loss for a future that I will never have. I went to Commonweal with the hope of getting my future back. What I mean by that is the sense that I can plan for a future, to have wishes for the future, but I learned that first I had to forgive myself for not having the future I had hoped for. I needed to learn to let go of the fantasy future that I thought I’d have so that I can live the future that I do have.

    I had to forgive myself for the constant assault on my body that was treatment. I had to forgive myself for the past that I cannot change. I had to release the expectation that I could change the past.

    You will love again the stranger who was your self.
    ~ Derek Walcott

    I also needed to forgive my body for not being the perfectly healthy body that I want it to be. I needed to forgive my body for growing the cancer that tried to kill me. And after the forgiveness, I thanked my body for being strong. I thanked my body for powering through and rebounding after each assault.

    At one point, Waz from Commonweal mentioned that we look at animals in nature with a sense of awe, and yet when we look in the mirror we do not see that same sense of awe. We need to learn to look in the mirror and see that sense of awe that is in ourselves.

    Instead of mercilessly judging and criticizing yourself for various inadequacies or shortcomings, self-compassion means you are kind and understanding when confronted with personal failings – after all, who ever said you were supposed to be perfect?
    ~ Kristin Neff – http://self-compassion.org/the-three-elements-of-self-compassion-2/

    I must learn to be compassionate towards myself. To be self-compassionate, to forgive myself and my body, to be thankful. I asked about the difference between being selfish and being self-compassionate. The response was that selfishness takes from others, where self-compassion does not. Compassion does not draw upon a well that is limited. It isn’t a zero-sum game, where giving to one means the other is losing.

    And so, by forgiving myself and my body, I move beyond the sense of loss that was overshadowing my soul to a sense of hope for the future. I see the resilience that is inside of me.

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  • Cancer as a gift

    Cancer as a gift

    I struggle with the idea of cancer as a gift. It is not something that I would wish on anyone. But it has changed me. It as also given me so many new opportunities, that I cannot dismiss the positive things that I have happened.

    In a session this morning (I’m at Commonweal in their Cancer Help Program), the idea of “strange grace” was presented. Rather than a gift, cancer allows us a strange grace. It gives us an opportunity to think about our death. To plan. To tell the people we love that we love them. To do the pressing things we feel we need to do. Sometimes even to say goodbye. It is not a gift, but it is a strange grace.

    My husband said the other day “the best friends she wishes she never met” – and it is so true. Another strange grace that cancer has given me is a closeness with so many amazing people. I have so many new wonderful friends that I would never have met if I didn’t have cancer. In addition, cancer has also brought me a lot closer to a lot of friends and colleagues – in very unexpected ways.

    It has also given me something meaningful to write about. I has given me many stories and allowed me to write many things that I know have helped people – that is so very rewarding.

    I have climbed back from treatment, and injury, to be stronger in many ways that I was before. I have demonstrated to myself that I can physically recover from the various insults. My oncologist described chemo and surgery like getting hit by a truck, twice. A double-wammy. I climbed out of that. I walked 32.5 miles in two days. That is not something that I thought I could ever do, and yet I did it.

    Goingeast.ca taught me that I have strong tenacity. If I put my mind to something I can power through it. One pedal stroke at a time. I’m good at that. Cancer has taught me that I’m also resilient. I can rebuild after being knocked down. That isn’t a characteristic that I associated with myself before.

    This week I’m at Commonweal for their Cancer Care Program – a week long retreat that focuses on healing the spirit – whatever that means to you. The space is very healing itself. Upon arrival I was struck by the beauty of it, but also with the energy of it. There is healing energy here. My body is feeling stronger, but also my mind. It is helping me understand and truly grieve for the losses that cancer has taken from me, to forgive myself, to forgive my body, which is helping me move forward. It is helping me see the narrative in my life – see the story more clearly. It is a special place that people come to from all over the world, and I’m so lucky that it is less than a two hour drive from our home. This place is a gift. Being here is a gift to my soul.

  • Flashbacks

    Flashbacks

    Toward the end of our Going East bike trip, I began to get these flashbacks. They would be full colour images (imaginations) in my brain of places we had been or people we had met. Mostly I would remember it, and then smile, recalling a particularly good meal or long day’s bike ride under the hot humid Thai sunshine.

    I find it rather interesting that as of late I’ve been having flashbacks of times in my treatment and recovery. Mostly it is things like when I started walking the hallways of my complex. Then when I took my first walk along the Guadalupe trail after being off my foot since early January. I see cyclists of the path and I’m reminded of pedal strokes – climbing Mount Hamilton shortly before my port was installed, stopping at every corner as I climbed to cry, or climbing it again two days before my last surgery. I find myself thinking, maybe I’ll be able to do it again this March. Once my foot finishes healing and I can ride again. Maybe.

    I am reminded of my many long walks in Alum Rock Park and in Rancho San Antonio. Again I think, one day soon I’ll be able to take long hikes again. Soon. There is no maybe on this one. Maybe is not an option. I will be hiking again at some point. Just not yet.

    I was up at Stanford today and in a bit of a nostalgic mood. I went to visit my tree and took a stroll around the cactus garden. I still love that cactus garden. With the rains this winter things are much greener than I ever recall seeing them. I do not recall ever seeing the grass so long in front of my tree that I was unable to find a clear path to get there. One of the boxed trees was in bloom. Several of the smaller cacti had blooms. It was beautiful. It was green. It was a new birth – rising up from the ashes of too many dry months.




    In some ways this green is symbolic. It is the new growth after a long illness. And yet, the drought it not gone. Nor is all the illness in my body. I’m not ‘sick’ anymore. I am cancer-free. But the cancer still lingers in its collateral damage. The memories are still there, fresh with the occasional flashback, but fading as time passes. I cannot stand to see bald pictures of me, and yet, at that time, I embraced the baldness. I proudly showed those photos. But not today. I’m not ready to embrace the bald, cancer sick me. Not yet.

    Hmmm… maybe they are not Flashbacks after all, maybe they are just stupid Facebook Memories, that keep popping onto my timeline. There seems to be no way to permanently disable them. Facebook should allow you to block dates from its “memories” apps. The latest was their friends day app. It showed a collage of things drawn from your Facebook timeline. It was a beautiful collage of friendship – and then it ended with “and remember this” and promptly showed a bald picture of me that was taken the day before my first cancer surgery. Yup, I remember that. Nope, I didn’t really need to or want to. Thanks.

  • Putting one foot in front of the other

    Putting one foot in front of the other

    These last few days I’ve had lots of flashbacks and reflections as to where I was at this time last year. On the weekend I started walking a little more with the walking cast. It wasn’t much, just a lap of the complex. On Monday it occurred to me that I could do my walk up on the fourth floor so that I could get some sun on my skin. Not being able to walk/exercise has completely curtailed my outdoor activities. I was going stir crazy. It was then that I was reminded of the early days after my surgery. I began doing laps around the complex. I remember walking with my mother-in-law when she was here. It was not far, it was not about distance, but it was not nothing. I had to practice putting one foot in front of the other. I just needed to move.

    On Wednesday I was given freedom from the walking cast. I can walk with my running shoes – although I was sent to buy a specific pair of orthopedic inserts for them that now provide the appropriate support for my arches and my heel – so as not to re-injure myself. I was warned that there would be some pain, but that it should not be the unbearable pain that I was in when I first went to see the doctor three and half weeks ago. I was also given permission to get back in the pool. The biggest caution was to take it easy at first, but also to avoid walking on any hard surface barefoot. Fortunately I have great new pair of Crocs sandals for walking to/from the pool and for the showers at the gym.

    I began with a short walk in the park, followed by running a bunch of errands. That was more than enough walking for me yesterday. Today I did a 1.5 km walk – the short lap of the Guadalupe trail from my place. It was just about right. I’m making progress. I just need to remember to take one step at a time. No giant leaps – at least not yet. I must say that I am so much happier being back on my feet again, even if it is just for 20 minutes a day!

  • A new perspective on sleep

    A new perspective on sleep

    One of the side effects of various hormone therapies is disruption of sleep. I also have sleep apnea (thank-you surgery and hormone therapy!), so I see a sleep doctor. I didn’t like the clinic I was at originally, so I moved to a new one and I love the new doctor. She spent an hour with me (initial consult) listening to me and then giving me some advice on ways in which to think of sleep.

    What really struck me was that she was really good at listening to me. Picked out some tidbits based upon the stories that I was telling, and gave me advice that involved making small changes to my thinking and my activities that so far have had a huge impact.

    The bit of advice that really stuck with me was to change my perspective on sleep. Rather than thinking of sleep as restorative, think of sleep as something that our body accumulates during the day. The more you do (like exercise), the more sleep your body will accumulate. If you are healing, your sleep stores are a little bigger. If you try to sleep when you haven’t accumulated enough sleep, then you will sleep poorly. The hormone therapy (in my case aromatase inhibitors) can reduce the rate in which sleep is accumulated. So, I need to spend less time in bed.

    I find that I am now focusing on quality sleep rather than quantity sleep. I don’t try and sleep unless I’m tired. This has given me more hours to do things, which is good. It has also meant that the time I do spend sleeping is more productive too. I’m actually better rested now that I’m not trying to sleep too much.

    For me, changing the perspective has really helped.  If you are local to the Bay Area and want a recommendation for a great sleep doctor, email me.

     

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