BC Becky

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

Category: chemo

  • 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?

  • Bone-pain – a mixed blessing

    When I didn’t experience a lot of fatigue or any bone-pain yesterday, I felt it was a mixed blessing. I wondered if the reason I wasn’t feeling it was because I had successfully managed the side effects (although that doesn’t describe the lack of fatigue) or was it that the Neulasta shot that came via express scripts (mailed) wasn’t stored properly such that it was ineffective?

    This morning, when I started to feel the initial twinges of bone pain, I felt a bit of relief but also a bit of concern. The Neulasta is definitely working. This is a good thing. But everything seems to be running a day late (probably because of the later in the day infusion time). This means that my day early third infusion may feel like two days early infusion, and that would really suck. So, I’m crossing my fingers that the delayed onset was really just me managing the side effects better.

    In looking at my medications records, it appears I did not take my NSAID before bed last night. I highly recommend the Dosecast app (available on both Android and iOS) for tracking when you actually take medication. I can never remember what pill I took when, so every time I take something I just click the “take” button in Dosecast. I can then look up when I took what, and I can print out a 30-day summary for my doctors. So when my primary care doc asked how often I was taking the heartburn medication, I could just show that particular medication to him on my phone. Very handy.

    I’ve now taken my NSAID but cannot sit until it takes effect. I’m typing this from my husbands standing desk (handy that he has it!). I’m about to go out for a training walk with my iPod – which now has Warrior by Scandal loaded on it in addition to my regular mix of Bon Jovi and Bryan Adams. My walk may turn more into a moving dance than a walk!

    In other notes, I’m going bald and my eyebrows are thinning. People say “you still have your eyebrows” as it seems mostly that I am the only that notices the difference. They look manicured now, and I haven’t waxed them in years! Last night when I pulled on my sleeping t-shirt I felt all prickly on the neck. I discovered that the act of pulling the shirt over my head dislodged a bunch of the remaining head stubble and embedded in the shirt collar. I had to put a buff on my head (head scarf) before putting on a clean shirt, so that I didn’t end up with hair in my shirt collar again! What is interesting is that I do seem to have a layer of baby fuzz on my head. So the hair that is falling out is being replaced with baby fuzz hair. It looks like I have more bald patches than hair patches now but the fuzz means it doesn’t feel that way.

    Apply sunscreen to my head results in a hand full of little hairs!

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    I am reminded with each new experience to that I am approaching this chemo thing (and cancer thing) with a sense of curiosity, and that is what is keeping me sane. Now I’m off for a walk/dance 🙂

     

     

  • Revising my stretch goals

    When the oncologist told me not to wait to have surgery – that I should plan to have surgery 2-4 week after chemo. His words were “don’t waste the chemo by waiting”, I had to make a choice – triathlon after chemo or Hawaii. It was a pretty easy choice. The triathlon was proving to be challenging, as I wasn’t finding any newbie friendly events. So, I revised my plan.

    One of the ladies at one of my support groups had walked in the Avon Walk for Breast Cancer. She was very inspired by the experience. I have known others who have done similar walk’s in Ottawa (known as the Weekend to End Women’s Cancers). I wasn’t so sure about the whole idea. Does the money go someplace useful? In looking into here, the answer is actually yes. Without socialized medicine, much of the money goes to provide programs for women who otherwise would not afford screening or whose treatment options would be limited by their finances rather than their choice. I am lucky, in that when I was diagnosed, we were in a good financial position, but also we have decent medical insurance. As much as we fight occasionally to get prescriptions covered, I’ve never had to make a treatment decision based upon finances. I am very lucky, and many other women are not. So, I’ve been seriously considering the Avon Walk … so much so that I will probably sign up this weekend! I’m just waiting for some answers to questions relating to international donations.

    The next Avon Walk in San Francisco is July 11-12, 2015. The other coolness factor about this is just walking around San Francisco. The walk will necessary involve crossing the Golden Gate bridge at least once. Last year’s walk involved walking through Sausalito – which always reminds me of Starfleet Academy as well as walking through several interesting areas of San Francisco! For me, this event will come at a time of transition. I will be transitioning from ‘in-treatment’ to ‘survivorship’. The walk provides a great symbolic activity, and I can visualize myself walking through the finish line as if it were a bridging ceremony marking the end of treatment and all the healing from the trauma associated with treatment, to begin my life as a breast cancer survivor.

    To help me start training for the walk, I’ve set a new post-chemo stretch goal of being able to do the hike down from the summit of Haleakalā on Maui. The hiking trail is 18.1km. That is double the furthest distance I’ve ever walked. It also involves altitude, so I will need to get in some altitude training.

    Screen Shot 2014-08-01 at 21.58.21To help with the altitude training, we have booked our anniversary weekend (September 28) trip up to Yosemite National Park. Yosemite has some nice high altitude hiking trails, so I should be able to test out my abilities for hiking at altitude that weekend. It should also be a lot nicer weather in the fall – as Yosemite in the summer is darn hot! We may do an additional Yosemite trip (or Tahoe) to celebrate the end of chemo (November 17) with one more weekend of higher altitude hikes before we go to Hawaii. We shall see. It seems like a lot of time away, but awesome healing time, spent largely in the wilderness, so definitely worth it 🙂

    So there you go, my new stretch goals. Right now, I feel that they are very achievable!

     

  • 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.

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    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!

     

     

  • My improved body image

    I find it interesting that ever since my diagnosis, I have found that I have an improved body image. Sure I am carrying a few more pounds than I would like, but I am proud of the way my body looks. I rocked the buzz cut! Now with my hair patchy and falling out, I find myself dressing up a lot more to go out. When I visit friends or go to doctors appointments, I wear nicer cloths and dangly earrings. I’m getting a bit obsessed about buying different things to wear on my head that (get this) actually compliment the clothes that I’m wearing. I’ve never been that fashion conscious before!

    But each day, I also read Facebook posts in the amazing Flat and Fabulous group about women who are afraid to walk outside their doors after surgery. They are constantly worried cautious about how they look. They fight every day with negative body images, and struggle because they don’t want ‘yet one more surgery’ to clean things up. Some live in physical pain, while others the pain is mostly emotional. They struggle every day.

    This worries me. I have never been happier with my body. So I’m worried about what it will look like after surgery, but also what the surgery will do to my sense of body image. I want to keep this feeling I have now. I don’t want it to ever go away. I want to always be proud of my body, and happy with my body the way it is.

    Since my diagnosis, and I started this blog, I’ve used the expression “my breasts are now public domain”. I talk freely about them. I have even posted an MRI picture of the cancers in my left breast. If I were back in Ottawa I would have asking all my girlfriends to feel my left breast, so that they too would know exactly what breast cancer ‘felt’ like (as part of my public service announcement). As an educator, I am now in a position to educate people about what it means to have breast cancer. But I have to highlight that I’m an exception to the rule. My self-confidence and my current body image is not the norm. For too many women this is an everyday struggle, and I find that sad. And everyday I hope that surgery doesn’t change my current view of my body image!

  • 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).

  • Moving forward

    I now have a surgery date – December 17th. It isn’t exactly the date I wanted, but it is something that I can work with. With that in place, I can now start to move forward with my life.

    Over the last week I have started to move beyond my diagnosis. My life is becoming less about cancer-Becky and I am looking at a re-emergence as academic-Rebecca. I have talked to my supervisor and put a plan in place that will allow me to move forward with my PhD. I’ve talked to the very supportive folks at the Department of Family Medicine who are also onboard to help me move forward. I am thankful for all the support I’m getting.

    But the whole idea is still rather difficult. I’ve had to turn down a couple of conference presentations – the most recent being Dev Learn – which is disappointing, but there is no way I could travel to Vegas during chemo and present at a conference. It would be too much. I’ve decided that I’ll try a near-by conference first – one in Berkeley where I’ve had a poster accepted. I can get to Berkeley in 2 hours via public transit. It will be my first academic conference post-surgery (end of February), and I most likely won’t have hair. I have nice outfits that I can wear that will work with a flat chest, if I choose not to wear foobs, but I haven’t thought yet about what I shall do about my head. The whole idea of conferencing seems a little overwhelming right now – and yet I know it is something that I need to do as part of my re-emergence.

    In this re-emergence, I am already thinking about my new identity – and how much I might want my identities to overlap. I’m considering a proposal for the Canadian Conference on Medical Education (CCME) relating to this blog, my experience as a cancer patient, but also my role as a non-physician medical educator. I’m not sure what that presentation would look like yet – I need to do some more consultations with friends and colleagues in the medical education field, and with any luck find one or more people interested in collaborating on something. I feel like there is something important to be learned in this process, I just don’t know what it is yet. I’d like to talk about the power of social media as a cancer patient – perhaps the role of social media in cancer patient education – and what medical students, residents, and physicians can learn from the new ‘connected’ patient experience.

    My forward moving may get delayed now and then – and I certainly am not moving at the same pace as I was before diagnosis or chemo – I am glad, however, to be making some progress.

  • Every day a new side effect

    Chemo has many side effects, so many, that they don’t tell you about them. What happens is, when you have a symptom, you contact your oncologist (or the oncologist on call) to see whether or not it is something you should worry about. There are so many side effects, many of which are rare or not that common, that listing them all to every patient would be impossible. But, from the patient perspective, I find myself constantly running into these odd side effects. I’m happy to be part of several support networks (both face-to-face and virtual). The virtual networks in particular are useful for finding out whether something is “call the doctor immediately” or “pretty common, mention next time your are talking to your oncologist”. For the most part, my oncologist has not been concerned about the side effects I’ve experienced. It seems to be though, that ever day something new pops up.

    Yesterday’s new side effect was loss of voice. Not a total loss, but I notice that suddenly my voice is horse and it is more difficult to speak. This of course posses and interesting challenge, as I also have blisters on my hands from toxic erythema of chemo, which I also experienced last cycle. When the blisters are at their worst, typing can be painful, so I use voice-to-text on my computer. The horse voice makes that a little more challenging. I actually don’t know for certain yet if this is a chemo side effect or if there is something else going on, but my social networks tell me it is not uncommon. I just haven’t yet had that confirmation from my oncologist.

    I’m also loosing my hair. Now, this is something that was expected, and it was why I shaved my head in advance of cycle 2. However, when people say  that hair loss usually occurs on days 3-4 of cycle 2, I expected it to be a single day event. That isn’t really what is happening. My hair is getting thinner on various parts of my body. From the front, you don’t really notice the hair loss on my head (which made me think it wasn’t happening), but from the back it is pretty clear. It is also interesting to compare mine to Scott’s, since we had them shaved at the same time. His is growing, mine clearly is not. It is actually the towels where I notice it most. I’ve taken to using two towels after a shower, one for my head and one for my body – otherwise, I end up with the little hairs from my head all over my body!

    2014-07-28 19.35.32Once the hand sores finish up, I prepare myself for the mouth sores. I’m now at a stage where food is tasting funny and my mouth feels fuzzy, like a layer of skin is shedding in my mouth. Last cycle I had a sore on my tongue which was rather annoying and painful. Food was finally tasting good, but it hurt to eat (ugh). I’m hoping that by using the magic mouthwash in advance I manage to avoid the worse of the mouth sores this cycle.

    Today was also my last swim until after my chemo nadir (blood count low). I have three days (8-10) where I cannot swim as my risk of infection is too high. I’ll miss swimming, especially if my hand sores aren’t healed  as biking isn’t an option when I have blisters on my hands. This actually also coincides with fatigue, so last time on day 10 all I did was sleep all day.

    All that being said, so far cycle two has not been as bad as cycle 1. I think because I have a better idea of what to expect, I can be more proactive about managing what is happening. I can also plan my weeks out better. I now know not to commit to things on specific days, but on other days I can be more flexible. That helps. The control freak in me is feeling more in control of what is happening.

  • Bilateral Mastectomies

    A friend sent me an email with a recent article in the New York Times about the prevalence of bilateral mastectomies entitled “The Wrong Approach to Breast Cancer“.

    I read the article with much interest but also much distain. There are several issues that are not addressed in the article, but it also highlights some important trends and issues in breast cancer treatment. Let me start by sharing a couple of acronyms that will make this discussion easier – BMX stands for bilateral mastectomy, and PMX stands for prophylactic (i.e. preventative) mastectomy.

    I also need to point out that the discussion is not about women with be BRCA1/BRCA2 breast cancer genes. Some useful statistics: 12% of women in the general population develop breast cancer, of these, up to 5-10% (yes hazy statistic there) MAY have an abnormal BRCA gene. For this small percentage of women, the likelihood of breast (80%+) and ovarian (25%+) cancers is huge. Prophylactic surgery for these women brings peace of mind.

    The NYTimes article highlights that PMX is unnecessary as it does not improve survival rates. The article highlights the over-use of this choice. What the article doesn’t say is that one of the reasons so many women choose PMX is that they are sold on the ease of reconstruction. In the US, if a women has breast cancer, insurance is required to pay not only for treatments but also for reconstruction (I was told this at my very first surgical visit the DAY I was told I had cancer). A women from the UK commented that she was required to see a psychiatrist because she did not want reconstruction. The pressure to reconstruct is huge, but also, the way in which is it is sold is also misleading. The potential complications are understated.

    The NYTimes article talks about statistics but does not take into account mental health. The far majority of breast cancers occur in only one breast (I’m an oddity). In many cases, women have the first breast removed, but then choose the PMX for the second breast. In some cases this is because of fear of cancer returning, as stated in the article, but in other cases it is because the women have difficulty living lopsided. The lack of symmetry becomes a constant nagging reminder of the cancer. It can be too much for some women. There are many women who are very happy about their choice of PMX and reconstruction, and many women who are happy about their choice for PMX and no reconstruction. What concerns me about this article is that it research stated like this gives insurance companies a reason to NOT do the surgery, when it may be in the best interest of the individual. Mental health and quality of live after surgery are two variables that are not considered.

    I’m concerned for women who have PMX because they are sold on the ease of reconstruction, but I’m also concerned about potentially denying PMX for women whose quality of life will be significantly improved by it.

    My personal case is different. I don’t qualify as a statistic in most studies because the nature of bilateral disease is not understood, but also because it is not very common. I have multi-focal cancers in my left breast (two tumors in different parts of the breast – the first is the one I felt (invasive ductal carcinoma, IDC grade 3 about 4cm), the second is DCIS (stage 0 non-invasive). In my right breast I have about a 2cm mass IDC grade 2 (it could not be felt and was found by a very good radiologist). So for some unknown reason my body suddenly started to grow breast cancer – and it did it quickly in multiple places. For me, the right choice is a BMX. It is not prophylactic, as I am not doing it to prevent a cancer from occurring. The cancer is already there.

    I could have a lumpectomy to remove the three areas – but then I would need radiation treatments (I might still need them). I would need to have mammograms and maybe even breast MRIs every 6 months for the rest of my life. I would need to go through biopsies every time they found something suspicious, and any shadow would be considered suspicious because of my history. I would also be so very oddly deformed, with both breasts being different sizes and shapes. I would have a constant battle with body image. For me, this would lead to a terrible quality of life. I don’t want to live having to constantly worry about how I looked or when the next doctors appointment would be. It is bad enough to go through that during active treatment, I don’t want that to be my life after treatment.

    I love the idea of being flat and having choices. What I hope for most is that my breast surgeon does a good job and I have nice clean scars. Then I can choose to wear foobs if I want an outfit to look a certain way, but I can also choose to not wear anything on a hot sunny day. I love the idea of a bra free life! To be honest, I rarely wear one now – but I’m finding that with all the insults to my breasts (biopsies and chemo) that I need to start wearing one more often, as they need to be supported.

    What I really want to say about the NY Times article is that breast cancer treatment is an individual choice. Statistics can be useful in helping us make a choice, but the right choice is an individual one. For some women a PBX is the right choice, even if there is no statistical advantage to it, for others it is not. I get a bit insulted when the article assumes that women are making choices that are “not truly necessary” and assume that the doctor knows best, when the doctor isn’t the one having to live with the decision.

  • 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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