BC Becky

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

Category: Navigating the new me

  • Live life on your own terms

    Live life on your own terms

    Last weekend I attended a memorial service for a friend from support group. She was the first person within my face-to-face circle of friends to die of breast cancer. I find myself wondering, if you die of complications related to the treatment of breast cancer, is it still considered dying of the cancer? Anyways, that aside isn’t relevant to this point of this post.

    The over arching message from her celebration of life was that she “lived life on her own terms“. I learned more about her from the service. Our lives were similar in so many ways. I wish I had chance to get to know her better. Our last exchange was a Facebook chat where she said to me, sorry cannot make it but please keep inviting. She died very quickly after her metastatic diagnosis. An aside for those that don’t know, breast cancer doesn’t kill you when it is in your breasts. It kills when it spreads to your bones, liver, lungs, and/or brain. When it spreads to other parts of your body it is called metastatic breast cancer. Some people with metastatic breast cancer live several years after diagnosis. They live in constant treatment jumping from one regime to the next as the disease adapts to each treatment. Life becomes about staying one step ahead of the disease.

    I find myself replaying the phrase in my head “live life on your own terms“. I’m not exactly certain what that means, but it seems to help me whenever I doubt myself. Whenever I find myself feeling a bout of impostor syndrome, questioning if I belong someplace or if my contributions matter in the world. Then I think, does it matter if others value what I do as long as I am enjoying what I do? As long at it matters to me? As long as I’m “living life on my own terms” … it is certainly something that I hope people say about me at my celebration of life … “she lived life on her own terms” … that is something worth celebrating.

  • Place memories

    Place memories

    The other day I said to my husband that Yosemite was my “cancer place”. The first time I went there was as a brief holiday before the beginning of chemotherapy. We went again for our anniversary while I was in the middle of chemotherapy. My memories of Yosemite are all tied up in my cancer experience. I said the same thing about the condo we rented for the last two years. It is the place I lived when I was diagnosed and went through cancer treatment. I was very ready to move on to a new place that did not have those associations.

    The problem with getting cancer right after moving to California, is that I don’t have non-cancer memories of places. Almost every place I go, the memories associated with that place are cancer memories. My brain does not have non-cancer memories to fall back on. The sights, sounds, and smells, all remind me of different times in my cancer journey.

    I definitely need to try to find some new places, but I also need to make new memories. I need to create memories in places that are not cancer memories – so that when I go someplace, I’m not remembering my cancer or my cancer recovery, but rather I’m remembering what I enjoyed about the places.

    Last week I got to create new memories at a place that I love – Calaveras Big Trees state park. We visited there last summer almost exactly a year ago. We really enjoyed it despite locking ourselves out of our rental van! Last time I wasn’t able to complete the entire South Grove hike – in part because I was hiking too slowly and we had to leave that day.

    This time we planned a little better and did the South Grove hike on the day where we did not have any other plans. It was nice to have the freedom of time to explore the trees. Despite my various injuries, I was able to do the complete hike – all 10.8 km of it! I was also able to create some new memories of the place – not involving me and cancer. We enjoyed sharing the Big Tree experience with my sister-in-law, brother-in-law and 9-year niece. I’m happy to say that I now have some new memories of the place – memories that don’t involve me and cancer. I hope to spend the next couple of years working towards re-programming my brain for all the local places. I want to be able to go places and not have flashbacks or be reminded of the emotions I had the last time I was there. I’m ready for California to not be my cancer place!

     

  • 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

  • I didn’t get sick … life with #celiac disease

    I didn’t get sick … life with #celiac disease

    I just had a conversation with a friend about how we need to be better about blogging when things go well. It is so easy to find reason to write and rant about things, but more difficult to remember to write when things go well. So this post is mostly about things going well, with a little stupid mistake on my part.

    Last week I spent the three days in New Orleans for an Ed Tech conference. I managed to navigate eating in New Orleans without getting sick. That is a huge success. I had only one minor melt down – and that had more to do with high expectations not being met. We were at a nice restaurant for a special dinner event with 50+ people. I expected that when I requested a gluten free meal (which I did well in advance) that I would get a decent meal. Unfortunately the shared appetizers were not gluten free and there was no effort made to provide something. Then when the meal came I was not given a choice between chicken or fish like everyone else. I was given a piece of dry chicken breast. I had a minor melt down. I refused to eat it. Shed a few tears at the frustration (body filled with sadness), then turned it into anger. I expressed my anger to the wait staff and asked that they asked the chef to make me something better. I would be happy with pan fried piece of fish that was gluten free. This should not be a difficult request. The waiter did well. They took away my dried chicken breast and about 5 minutes later a nice piece of pan fried fish arrived. I am so glad that I found the courage to get up and complain. This is part of my advocacy – I remember writing about it early. I need to speak up for all those with celiac who are not able to. Good restaurants can do better!

    I am, unfortunately, very sensitive to gluten. After getting home, I foolishly bought some chocolate ice cream. It was a brand that I have purchased before – organic, local. I’ve always bought the cookies and cream made with gluten-free cookies. I’ve never had a problem. This time I bought the dutch chocolate. The next day I was horribly sick (diarrhea, stomach cramps, felt like a fever). It took me a while to figure out what it was that I had eaten. I should have known better. I recall at the conference in New Orleans someone handing out chocolate bars. I asked if it was gluten free. They said it was just chocolate, so it should be. I explained to him that most chocolate is NOT gluten free, as it is often processed on equipment that also processes gluten. I knew enough in New Orleans not to try it. I should have known that the dutch chocolate flavored ice cream would be a problem. As the saying goes, live and learn.

    I am celebrating that I didn’t get sick in New Orleans, and I’m learning that I shouldn’t buy any ice cream that isn’t gluten free. Fortunately, I own a good ice cream machine. Next time I want chocolate ice cream, I’ll make my own.

  • 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!

  • I now see awe

    I now see awe

    For the last several months I’ve hated it when Facebook sent me reminders of my bald days. I couldn’t look at bald pictures of myself without feeling a sense of loss. I wanted to put that behind me. I didn’t want to see them. I didn’t want the wave of sadness that I felt every time they were presented to me.

    Since Commonweal, I now see myself differently. When the picture popped up on my timeline, I saw the beauty in it. I was awe inspired by the strength I had at the time the picture was taken. It was taken the day before my first surgery (along with a series of nude photos that captured my post-chemo pre-surgery body). Never in my mind had I thought that I would one day be sitting in a studio in Berkley California posing nude for a photo shoot.

    Now when I see the picture I am awe inspired. I see the strength that I had at that time. I see pure beauty in my eyes.  It is a wonderfully liberating transition. There is no sadness in it anymore, rather, there is a smile that I exchange with my self as if greeting a long time friend. It’s nice to see you again 🙂

  • 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.

  • Hormone therapy update

    Hormone therapy update

    I thought it was time to give an update on my progress with hormone therapy. Fortunately, there is not a whole lot to say. This week I added the denosumab shot (Prolia). The purpose of this shot is to help my body begin to rebuild bones, since I have some reduced bone density. The issue could have been caused by the chemo, by celiac, and can be worsened by the aromatase inhibitor.

    Ever since my oncologist described the bone building process, I have imagined by body filled with these little scrubbers (osteoblasts) that eat up my bones. They were out of check with the calcium that was needed to rebuild the bones. So with every ache or pain in my spine, I imagined little scrubbers working too hard sweeping my bones raw. It is a bit of a funny analogy.

    The denosumab reduces the scrubbers, so that calcium can start to rebuild your bones. One concern is that you need to have enough calcium flowing in your blood to make up for the sudden uptake by your bones. To ensure that you won’t have trouble, you do blood tests in advance of the injection validating that you have enough calcium in your blood. Because of this, the injection which is subcutaneous, must be given by a nurse who validates your labs before giving it to you. Since I do it at the chemo infusion center, they use the same checks and balances they do with chemo, having a second nurse validate with the first that you are who they think you are and your medical records line up with the prescription they are about to give you.

    With that, I’m now on officially on the full regime of hormone therapy. I get a shot every three months to block my ovaries (Lupron) from producing estrogen. This also reduces the signals sent by the pituitary glad telling the ovaries to make estrogen. I take a daily pill (anastrozole) that prevents my body from converting fat to estrogen and blocks whatever production was left in the pituitary. Finally, every six months I get a Prolia injection to help my body rebuild bones which is one of the side effects of not having any estrogen in my system. After about two years, we will do another bone scan and validate that the osteopenia has been reversed.

    I’m happy to report that so far so good. I haven’t noticed any significant side effects from the Lupron, anastrozole, or Prolia. The whole process does have a lot of moving parts. The goal is to prevent my body from producing estrogen because my cancer (all three tumors) were more than 95% estrogen receptor positive (one only needs greater than 10% to be called estrogen receptor positive). This means that the primary fuel for all of my tumors was estrogen.  Blocking it, reduces the risk of recurrence (or if it is inevitable, it delays it – we just don’t know what causes some breast cancer to spread and others not to, so we cannot say it will prevent it). I’m just happy to have found a combination that is currently working for me. I say currently because it could change. In six months, a year, two years, my body could decide that it doesn’t like the anastrozole and start giving me headaches again.

    I find the name ‘hormone therapy’ an interesting choice because what it is really doing is blocking hormones. In many ways it is really anti-hormone therapy.

    The one side effect that I am noticing is a change in my sleep. I’m finding that I’m not able to sleep nearly as much. In many ways this is a good thing. It has meant a shift in my lifestyle – one which I describe a little in my post about sleep. For now, this change is working for me.

    So far so good.

  • 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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