BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Category: active treatment

  • 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!

  • Early morning walks

    One advantage to being wide awake at 5am is the ability to go out for a walk before the sun rises. Early morning walks mean I don’t need to cover my head or arms – I can walk and enjoy the feel of the light breeze against my skin.

    This morning, I walked with Scott along my favourite part of the Guadeloupe trail, which runs right behind our apartment. About 1.5 km from our apartment, there is a pair of lovely white birds (some kind of crane, I believe they are egrets). They must be nesting in the area, as I’ve seen them almost every time I ride or walk along the path. I like to walk or ride to visit ‘my birds’ in the morning. There is also another large bird that we were not able to identify – perhaps a great blue heron.  It’s colours are such that it would be very difficult to get a picture, as it almost blends into the background. I’ve seen it fly along the river on one of my bike rides. This morning, it was nice to share the experience with Scott (I’m usually biking or walking alone).Photo Jul 27, 6 54 24 AM

    With the overcast sky and cool breeze I found myself enjoying the wind on my arms. I’d hold my arms up in the air, reminding me of cormorants by the sea holding out their wings to warm them up after a deep dive.  At that hour, we had the path mostly to ourselves. There were a few joggers that passed us, smiling, or nodding. No one seem to notice (or care) that I was lacking hair!

    Photo Jul 27, 6 54 40 AM

     

  • Recommended reading

    Kelley Doyle Philbin writes an elegant post entitled “EVERYTHING I NEED TO KNOW IN LIFE I LEARNED WHEN I WAS DIAGNOSED WITH BREAST CANCER!” that I highly recommend. I found a lot of her words resonated – both with my experience and with the experiences that others have shared with me during various support groups that I attend. Her words so elegantly reflect the reality for many women.

    I am sad whenever I hear of men leaving when their partner has breast cancer. I find myself wishing for these women that they find a real man (or women) – one who truly loves them for who they are – as I have been so lucky to find my true life partner. Any man (or women) who is so shallow doesn’t deserve the love of the strong women who are cancer warriors.

    I also worry, not about my husbands love for me, but about his health – and what he needs to be doing to take care of himself, because it is a lot to take care of me and I cannot adequately take care of him. At least not right now, not in this moment, when I’m too focused – sometimes feeling selfishly focused – on me. But knowing also, that part of being a warrior is being selfish when I need to be – cause right now, I need strength to mentally (more so than physically) get through two more rounds of AC chemo and 12 rounds of T chemo!

    Soon, this shall trump both RAGBRAI and Africa as the hardest thing I’ve ever had to do!

     

  • Day 3 is just plain hard

    Today is day 3 and it is a hard day. It was a hard day last cycle too. I am thankful that there will only be two more cycles of AC and that means only two more day threes.

    Why is day three so hard? The neulasta pains are crazy. It isn’t a new kind of muscle pain – pain from the inside out. It hurts to swallow but it isn’t a sore throat. It is the muscles around the throat and the neck that all just plain hurt. And this makes me feel sad.

    I walked this morning, and I even biked a short bit this afternoon, but that didn’t seem to prevent the pains – although it was nice to get out – it is also very hot outside today – so I am thankful that we have central air!  But it is still hard. It is a day a sleep a lot and watch TV a lot …

    The biopsy on Monday means I couldn’t swim today, so I missed my magical afternoon swimming with my clothing on. I will not allow anything to disrupt that routine next cycle as I think it is one of the things that helps me get through it. I’d also like to do Reiki on day 3, but my Reiki healer is away this week, so I don’t see her until Tuesday. Hopefully, she will be in next cycle.

    So, now I know, day 3 is hard, but it is just one day … tomorrow will be better.

    The good news today is that we finally got some of the scheduling figured out. There was a mix up on the schedule for chemo, so they had the wrong type listed for the second round. So, now I know my last infusion date is set for November 17th.  So, surgery will be either December 10 or December 17 (I need to decide which date to have them hold). So, Hawaii will be the week of December 1st … something to look forward to …

  • Breast cancer, chemotherapy, and sexuality

    A question that comes up on various breast cancer online communities relates to sex and breast cancer – and more specifically sex and chemotherapy.

    I have been fortunate, in that several years ago, both my husband and I were trained as Adult Our Whole Lives (OWL) Sexuality educators. I have also been trained to lead the Senior High program. Both these programs are about learning about and learning how to talk about sexuality. They teach age appropriate ways in which to discuss and discover our bodies.

    So, when asked about sexuality and chemotherapy, I was not afraid to offer up some advice. First off, check with your oncologist about your specific regime, as the body excretes chemo differently, and you do not want to put your partner at risk.  There are times during chemo when it is not advised to have intercourse (but you can still cuddle and play).

    My first bit of advice, is to remember your teenage/20s and learn to play again – If you have the chance to play before chemo, try out different types of condoms. If you find regular condoms uncomfortable, try the latex free ones. Some people (either gender) can find that they are sensitive to latex making it very uncomfortable. There are non-latex options available. Also experiment with lots of lubricant. There are many types available, some work better than others – you may react to some and not others. If a male partner is not liking the feel of the condom, try adding a drop or two of additional lube inside the condom. I’m told that helps with sensitivity. For women, use lots, with some help apply internally. If that doesn’t help, talk to your oncologist about vaginal dryness (this is a issue with chemo as well as anti-homone therapies) – there are medications/creams/etc available to help.

    Typically, when you teach about sexuality you avoid personal sharing. The only personal sharing I will say is that we are having fun – we are remembering our younger years – and we are exploring my new body – rubbing shaved heads it kinds fun = although I’m not sure how much longer mine will have hair! Loss of hair is an exciting way to experience new sensations – so not everything about cancer needs to suck!

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