BC Becky

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

Tag: reflection

  • The Cost of Appearances

    In reading the chapter ‘The Cost of Appearances’ in Arthur Frank’s (1991) At the Will of the Body, reminded me of my first Doxorubicin (Adriamycin other wise referred to as A chemo) chemotherapy injection. I wrote about the experience very briefly in a post The First Day Of Chemo on my blog. In my blog post, I failed to mention two things.

    The first reflection was that my husband wasn’t with me when the nurse came to give me that particular infusion. The social worker had come for a visit and my husband went off to talk to her. Somehow, with four AC chemo infusions, my husband was not there for any of the A injections. Doxorubicin is pushed into the veins by the chemo nurse. The rate of injection is closely controlled and the patient is monitored closely throughout. For me, the process took about 10 minutes, as I didn’t have any immediate problems with it. Some people experience immediate heart issues, which is what the nurses are watching for.

    The second reflection was that up until the point of the A infusion I was doing fine. I had taken some premeds (mostly pill form steroids) and had a saline drip running through the hose that led to my port. When the nurse came with syringes filled with the ‘red devil’, which is what Doxorubicin is often called because of it is red, I was hit with an intense emotion. I began to cry. Immediately the nurse drew the curtain. This is what I was remembering when I read the chapter on ‘The Cost of Appearances’.

    Even though emotions are allowed to happen, and respected, they are also hidden. In the shared infusion space, if the person is happy and chipper the curtains remain open. The room is a large space shared by several other people also going through infusions. But the moment you start to have an emotion that is seen to be negative, the curtain is drawn. You are ‘given your privacy’ but this is more about being hidden from the others in the room. Negative emotions are not allowed to be shared in the communal space – you are only allowed to share the positive emotions.

    This need to only share the positive means that patients feel the need to always be putting on a positive face. It denies them the opportunity to express the true emotions that they may be feeling. Sure, there were times when I was genuinely in a chipper mood. Most of the time my outward emotions echoed my inner emotions – but there were other times when I was scared and yet the fear was not validated. Expressing it was hidden from others, such that others who may be experiencing the same fear are not permitted to see that it is normal – that others have that feeling too.

    It seems to me that today I am hearing more about the lack of validation of feelings. Beth also blogged about it today in her post I bet you are glad you beat cancer. Fortunately, for the most part my care team does validate my experience. I blogged about my recent oncology appointment, where my oncologist validated that my crazy hormonal mood swings were real side effects, and we put a plan in place to do something about it. The validation alone made me feel a lot better.

  • Does participation in the breast cancer blogosphere increase anxiety?

    Does participation in the breast cancer blogosphere increase anxiety?

    I just read an article about eHealth literacy and anxiety and it got me thinking. Actually I’ve been thinking about it a fair bit lately – since my last appointment with my breast surgeon. At that appointment, the nurse practitioner told me “you have been cured”. It is the first time that someone has used the word “cured” about my cancer. I also found myself wondering if it was appropriate. I wondering if “no evidence of disease” is a better term than “cured”. I’m pretty sure my medical record says “NED” rather than “cured”. At my 6 months follow up I made my surgeon say “no evidence of disease” out loud because I needed to hear those words. But this got me thinking. If I didn’t know as much about breast cancer and recurrence, would I feel better about being told I was cured? Would I believe it and would it allow me to move on with my life with less anxiety?

    I found that being prepared for chemotherapy helped reduce my anxiety about it. I had read a lot, as had my husband. We had some sense of what I would be experiencing. I had mentors (that is the best word I can think of – peers who were ahead of me in the chemo process), who helped me feel more prepared for chemo. So, being health literate helped reduce my anxiety as I went through active treatment.

    But now that active treatment is over, the health literacy isn’t helping me. I know too much about this disease. I know that because of my age I’m at increased risk for recurrence. The information that I have means that I cannot simply accept it when the nurse practitioner uses the word “cured”. I cannot believe it. It does not help me feel less anxious.

    I’m left wondering if I would have had the same reaction post-treatment? Would I have found my self as anxious, if I wasn’t so aware. For me, being aware helped me advocate for myself during active treatment – but now it just makes me question. It makes it harder for me to trust my healthcare team. I find myself not believing when they tell me I’m OK. I’m doing fine. I’m cured.

    It makes me wonder, does participation in the breast cancer blogosphere make me more anxious?  Or is it participation in support groups that is causing an increase in my anxiety? Or is it just that I’m in that post treatment phase and anxiety is something that was going to happen to me anyways?

    Feature image by NYPhotographic.com license CC BY-SA 3.0 NY

  • Breast cancer prevention

    It is with mixed feelings that I read about breast cancer prevention. It is not that I want anyone to get breast cancer, I would not wish that on anyone. It is just that when I read about prevention, I enter that world of regret. I start running through the if onlys…

    …if only I had thrown out the water bottles with BPA sooner
    …if only I ate less red meat
    …if only I ate less sugar

    In general, I’m very good at not regretting the past. There is nothing I can do about it now, so no point in dwelling on it right?

    But still, when I hear of a charity that focuses on breast cancer prevention, I’m filled with both regret and doubt (can we really prevent breast cancer?).

    One charity that works to help prevent breast cancer by providing public advocacy and education campaigns based upon scientific evidence (not personal opinion – there are way too many personal anecdotes about what causes cancer!) is the Breast Cancer Fund.

    On October 11 (Canadian Thanksgiving Weekend), Scott and I will be doing a day hike that is a fundraiser for the Breast Cancer Fund. It is a good chance for us to meet some new people (we’ve joined a team captained by a friend-of-a-friend) while going on a hike up Mount Tam in Marin County (just north of San Francisco). It is an area that we haven’t yet explored, so that too should be fun. Mostly, it is a great excuse to get out, and help me get motivated to train for my walk down Mount Haleakalā in December. As this is a fundraiser walk, we could use a little help with fundraising …

    To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd

    To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue

  • Food Angst … never surrender

    For much of my adult life, my diet has been about control. I can choose to control what I eat, and as a control freak that is important. I’ve tried several different diets to no avail. Mostly, I’ve learned that my body doesn’t like some foods and it likes others. I’m lactose intolerant but my body is happier when I eat dairy – so I try to stick to dairy that my body likes, perhaps with the exception of ice cream. I may eat a little more ice-cream than I should, but at least it is organic “healthy” ice cream. That’s got to count for something.

    I went through a phase where I didn’t eat gluten. That didn’t go over well. My body likes wheat. I’m allergic to alternatives (quinoa and spelt).

    I’ve learned to listen to my body. Certain foods cause it grief (e.g. tomatoes cause eczema to act up, peppers and walnuts cause heartburn), so I avoid them. Other foods I enjoy.

    Going through chemo has meant that some rules had to be applied to what I eat – e.g no sushi or cold cuts for risk of listeria – but otherwise, all bets were off. I was given free reign to eat whatever I wanted, in part because there were days that I just needed calories. And there is that trust that, since I’m considered “healthy” for a cancer patient, that my diet and exercise regime are already good.

    However, at support group the question comes up “how has your diet changed as a result of cancer?” There is often a discussion about the link between cancer and sugar. I’ve done those diets too BTW – I went totally off sugar and lost a lot of weight but also lost energy. I went totally off sugar substitutes, not wanting my diet to be full of chemicals. I now generally avoid refined sugars, but I am guilty of eating pasta and white bread but I avoid potatoes. I find that too much of diets are fads – and little is truly known about what actually works or doesn’t work. I question whether there is such a thing as a “cancer diet”. Sure, people who used to eat a lot of fast food and junk, stop eating fast food and junk, they do better – but does that mean that sugar is the cause? An the article that crossed my stream today about the link between soy protein and cancer. This particularly annoys me, as it treats all soy as if were one thing. So the highly processed soy protein isolate used in the study is being made equivalent to the whole soy bean (edemame). When I asked the cancer nutritionist about soy, her comment was that whole soy such as edemame and tofu were good, but soy protein isolate which is often used in supplements (and check your granola bars and breakfast cereals) is a bad thing. So, when I read that article, it feels more like fear mongering about all soy, when in fact, some soy might actually be good for you. Note that the asian diet that is mentioned, which is typically a low cancer diet, involves a lot of whole soy products rather than highly processed derivatives.

    Before cancer, I ate a pretty healthy balanced diet, with mostly organic fruits and vegetables and definitely organic meats. Frankly, there are so many variables at play when it comes to diet – I’m just not convinced that whether or not I choose to have a little more ice cream or a brownie will have any affect on my overall health. I just hate being subjected to the guilt around my diet. I hate questioning and feeling guilty because my body is craving red meat, so I choose to have a steak for dinner (buffalo, not beef – so hormone free, grass-fed).

    I don’t want cancer to dictate what I eat. Having cancer means I have lost control of a lot what my body does. I have lost control over how I physically feel, and I’ve completely lost control over my schedule (as much as I try to manage it), and if I could only gain control over my red blood cell production! There are too many areas of my life where I have lost control. I’m not willing to give up control over what I choose to eat. Now, there are days when I don’t really have much choice – queasiness or mouth sores have severely limited what I could eat. I just hate that “cancer diets” propose to make me feel guilty for eating food that I want to eat!

    I’ve decide I have a new theme song when it comes to cancer diets … I’m going to “Never Surrender” (one of my favourite songs when I was teenager) …

  • Persistence, Tenacity, and New Blood

    Persistence, Tenacity, and New Blood

    This cancer journey reminds me of some aspects of our Going East bike trip – particularly during those times when persistence and tenacity are what you need to make it over that one last hill. I always thought this picture from our trip made a great motivational photo (Scott pushes the loaded recumbent bike up the mountain – you can see the sweat on his back – unfortunately the picture does not do the steepness of the hill justice). The locals thought we were crazy trying to bike over this mountain pass – but we were both persistent and tenacious and we made it!

    OK, this is steep

    Perhaps this is a better persistence picture (also in northern Thailand):

    Photo & Video Sharing by SmugMug

    My point here, is this is how I feel when I’m feeling fatigued. I feel like the entire road is uphill. And although these pictures show a struggle, they also bring a smile to my face. They remind me of challenges that I have overcome. They provide me with that little extra reminder, that yes, I can do this.

    Yesterday, I had my first transfusion. The AC chemo was knocking out my red blood cells (RBC), and they were not being given enough of a chance to bounce back between rounds. Folks have asked about drugs to help with RBC. Apparently the drugs take a long time (6-8 weeks) to boost production, and the side effects can be worse than the side effects of a transfusion. Given the more immediate need for a boost now, it made sense. And so, I had my AC chemo on Monday and a transfusion of two units of RBC on Tuesday. I cannot say I immediately feel better – but then the AC chemo knocks me down for a few days, so it is hard to say. What I can say is that I have more colour – my cheeks are pinker and my lips have natural colour again. I had not really realized how pale I was before the transfusion.

    Unfortunately, my phone doesn’t take very good photos.

    Photo & Video Sharing by SmugMug

    We were also serenaded by the harp during treatment, which was nice. Apparently, med students who are also musicians volunteer to play in the cancer center. This is the first time we’ve seen the harpist directly in the infusion treatment area.

    The volunteers at the hospital make the nice head scarfs/hats. I discovered that it works well when the tie is on the side – kinda makes me think I should learn to read tarot cards.

     

    So, now I have some new blood. I am still feeling some fatigue, but hopefully in the next day or two I’ll bounce back :-).

  • The more you know the less you want to know

    This NPR clip (short 4 minute clip) talks about how colleagues of women diagnosed with breast cancer react regarding their personal health – http://www.npr.org/2014/08/13/340005026/how-a-co-worker-s-breast-cancer-diagnosis-affects-colleagues

    In the brief podcast (I encourage you to listen to it), it talks about how knowing a colleague has been recently diagnosed with breast cancer, reduces the likelihood of women to get screened within the year or two after learning about their colleague.

    I’m curious whether or not this applies to blogs as well. So women who read my blog, I’ve setup an anonymous poll (totally not scientific or anything). If you do not already have breast cancer and are female, has reading my blog encouraged or discouraged you from doing breast self-exams and doing your annual physical? Click here to respond – all responses are anonymous. I’m curious to see what effect, if any, my diagnosis has had on friends and followers.

     

     

  • Reflections on body image

    Walking today, my husband mentioned by blog post about my improved body image. He ask if it was because my focus is now on strength rather than fat or weight. It occurred to me at that point that is was actually my physicians response to my body that was perhaps the biggest factor in my changed body image.

    My family medicine (primary care) doctor mentioned my body only in that I needed to consider my body weight. That I was at a point where I was starting to tip the scale towards obese. I was carrying too much weight. Yet, there was no focus on how strong I was or any other aspect of my physical health. I eat relatively healthy (healthier than most), and I exercise perhaps a little excessively compared to the average person. And yet I never really saw myself as someone who was in good health.

    Then I saw my oncologist. When looking at my health overall, he listed it as “excellent”. I was rather proud of that fact. And going into treatment for cancer, I felt stronger than I’ve ever felt. I felt healthy! Actually that too was an interesting challenge, as I felt strong and healthy, so did not see myself as ‘sick’. The whole cancer thing causes a cognitive dissonance, as I feel like I’m in excellent health.

    Upon reflection I realize just how large of an impact the view of my physicians has had on my overall self perception of my personal body image. Before cancer, I felt that I was overweight. Even though I was in good shape from a cardio perspective, and pretty strong (regular 30km+ bike rides), I still felt ‘fat’. I felt ‘overweight’. I knew that I was 20-30 pounds over my “ideal” weight. But now, (OK, I’ve lost 10 pounds, but still), I’m much happier with my body the way it is. I’m proud of the classification of “excellent health” in my oncologists records.

    I think it is just interesting how much weight I put on the opinions (or perhaps the presentations) from my doctors … and wonder, what family (primary care) physicians might learn from this reflection?

  • My ‘cancerversary’

    I have found myself wondering, what day would I recognize as my ‘cancerversary’. This is typically the day you find out you have cancer. It becomes a significant anniversary in your life after cancer – as does the first day you are told you are ‘cancer free’.

    Rather than choosing the day the radiologist confirmed cancer, I am choosing the day that I noticed something was different. That day, Scott and I went on a 27km bike ride around the Alviso Slough on the southern tip of San Francisco Bay (just north of where we live now).

    Screen Shot 2014-08-01 at 13.29.03

    I took several nice pictures, including these.

    Alviso1

    scottBike


    Alviso2    When I got home, I hopped in the shower as usual. Everything seemed rather normal until I went to dry off. The discharge from my left nipple was green (it was not abnormal for me to have clear discharge). I’m not sure if I noticed the change in shape then (a little concave bit above the nipple) but I did notice that when I laid down that there was a harder spot – but to me it felt more like a contracted muscle. I thought maybe I had pulled something.

    In the following days, I Google’d green discharge to see that it was no necessarily abnormal. Red is definitely a bad sign, but green wasn’t. The following Monday, June 9th, I decided to call my family doctor – cause well – it was better to have peace of mind. I even said “I think I’m being neurotic and it is nothing, but thought I’d get it checked”. The look on her face when she checked was pretty telling. It needed to be checked because there was definitely ‘something’ there.

    Anyways, I’m derailing. The point is, I first noticed the change on June 1st. So, although the change was confirmed by the radiologist on June 12 (with 98% certainty, they couldn’t be 100% certain until the pathology was back the following Monday), I think I shall indicate my ‘cancerversary’ as June 1st. It will be interesting to see what my reflections reveal on that date next year!

     

     

  • The transformative power of a bike ride

    One of the hardest things I’ve done lately, was to get out of bed after my afternoon nap, and get on my bike. It wasn’t that I didn’t have the energy for it – I did. I’m in a strong phase right now. It was that I was sad. And not the type of sad that happens when I have a needed breakdown, but the kind of sad that looks a lot like depression – and that scares me.

    So, I dragged my ass out of bed and had a bowl of ice cream. I’m allowed comfort foods whenever I want them! And when you are sad, they help a little … plus I knew I would need the energy, cause if I was going to get off my ass and go for a bike ride I needed to ensure my body was fueled before I left.

    So, I did it. I got changed and hopped on my road bike. For the first half hour of riding, I cried. My nose ran – most annoying side effect of chemo hair loss is that you lose the hair in your nose so your nose runs a lot sooner when you cry. I allowed myself to cry. I contemplated anti-depressant medication. I know that at some point I will probably need it, but I want to avoid it if I can. There are side effects to that as well.

    About a half hour into my ride something changed – the endorphins kicked in – I suddenly started to see the beauty around me. I stopped to take this picture as the bird seem to be posing just for me.

    2014-07-30 19.10.26 HDRThe bike ride transformed me – from sad-Becky back into warrior-Becky. For the remainder of the ride I worked out the important arguments in a letter to the Editor for the New York Times relating to my recent blog post on bilateral mastectomies, that I plan to write (hopefully later this evening). Thank-you for those who have encouraged me to write something more formal.

    I cannot say that I am no longer sad – I am just not dysfunctionally sad. I’ve moved past that part and can now start to pull my thoughts back together into actions. I hope to get out for another ride first thing tomorrow morning before it gets hot and sunny (since I cannot swim tomorrow due to low blood counts).

  • What does it mean to be a survivor? … I am a warrior!

    Today I found myself seeking out definitions of cancer survivor. In my context, I don’t know what it means to be a survivor. I certainly am a cancer warrior – I’m in treatment, I am living each day – but what does it mean to survive?

    Some definitions involve the time after treatment, when you given a stamp of being “cancer free”. This doesn’t happen until after surgery, when the cancer has been removed from your body. But I do not know, with breast cancer, when I will be considered “cancer free”. After chemo, there will be surgery, after surgery there will be up to 10 years of anti-hormone therapy. Am I cancer free after the surgery if I’m given the all clear? Then the fight isn’t against cancer itself, it is against ‘recurrence’ – which is an invisible devil. Is that when I become a survivor? Or, am I a survivor if I remain cancer free after the anti-hormone therapy? When do I get to start celebrating my “cancer free” life?

    I have been loosely following the blogs of a few women with metastatic disease. These women are fighters – they are everyday warriors – and in my view I see them as survivors – as they have learned to live “with” cancer. So, in their case, survivorship becomes more about a mental process – about how they see themselves. With each day that they fight and they live, they are survivors.

    One of my fears is that I become a metastatic survivor – because the strength required to live with cancer is a lot greater than the strength to fight cancer. Chemotherapy is hard, and the entire thought of chemotherapy to slow the disease rather than chemotherapy to kill it, is impossible for me to contemplate right now. I can fight this, because I am a warrior and one day I want to be a survivor!

    As I wrote this post, I had the song by Scandal “The Warrior” going through my head – so I made Scott get up from reading his book and dance with me … cause ‘I am the warrior!’  I can see this becoming a regular ritual in our household!

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