BC Becky

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

Tag: body image

  • Queen of wishful thinking

    When it comes to the entire surgery process, I find myself falling into the realm of ‘queen of wishful thinking’. I had convinced myself that ‘flat’ was that way to go. I joined a great supportive Facebook group ‘Flat & Fabulous’ and found that I was creating a new vision of myself that involved a beautiful flat chest – but it also involved a beautiful flat abdomen with no extra body fat.

    pushing_ball_uphill_4474x100pxMy reality is that I shall always being carrying extra body fat – if spending 16-month riding my bike around the world didn’t cause the perfect ‘flat’ body that I had envisioned then why do I think that cancer surgery would fix this. I’m in great physical shape now, and yet I still have 40% body fat. It isn’t something that will be changed by eating right and exercise – cause, in reality I do that already. As I age, I’m destined to gain a few more pounds, not loose them, and when you add in the early onset menopause (drug induced) that is part of the long-term treatment for breast cancer, my battle to keep my weight from increasing is all up hill.

    Another reality is that women who look as young as I do, and don’t have breast, but do have buddha bellies get as “when are you due?”. Our society associated that shape with pregnancy.

    So when the surgeon burst my bubble, I’ve had to do some serious reflection. What do I really want to look like after surgery? Long-term what do I want my body to be, in order to have a positive body image? What is a reasonable lifestyle for me to maintain?

    This last question is probably the most important. If my body image is tied to a lifestyle then I most definitely need to ensure that I’m not setting up unrealistic expectations of myself. I should not expect that magically, after double-mastectomy surgery that my body fat will just suddenly reduce itself. That I’ll magically be reformed into this skinny girl with no breasts and awesomely toned body – that is just me being completely unrealistic.

    Realistic expectations of mastectomy with my body type include having a concave space under my arms where currently I have fatty breast tissue. Not ‘flat’ space there, rather concave space! Reconstruction would be required to put some fat there, otherwise, I’ll have a gap between my armpit and my stomach fat where the ribs can be felt. My thoughts and focus had been on the front view, but I had not considered the three-dimensional view of my body.

    So now I’m looking at reconstruction options. There is a great video here that explains the various options. I’m strongly considering the procedures that involve re-allocation of my own body tissues. In addition, I’m looking at immediate reconstruction. This is a real option because I’ve done neo-adjuvant chemo, so the surgery will not delay chemotherapy. The only unknown variable is radiation. The surgeries that involve using my own tissue mean longer surgery (8-12 hours), longer hospital stay (4-5 days), plus longer recovery time (6-8 weeks). But from the reading I’ve done so far, I’m an ideal candidate. I have enough extra body fat, but not too much such that I shouldn’t have an increased risk of complications. It will be interesting to see what the surgeon has to say.

    So, now I’m in wait mode for a few weeks – while I recover from my last AC chemo and subject myself to the first couple of rounds of T-chemo (the first two or three rounds are supposed to be the hardest on this new chemo, as your body needs to adjust to it). One step at a time!

     

  • Rethinking reconstruction

    I had a couple of doctors updates yesterday. One with the breast surgeon and another with the oncologist. On the good news front, my oncologist said that my left breast felt like ‘a normal lumpy breast’ rather than a breast with a large cancerous tumor! This is a sign that the chemo is working. He also commented that this point we are on ‘auto-pilot’, finishing off the chemo regime with switch to weekly Paclitaxol (T-chemo) starting Labour Day for 12 weeks. It also means I have about 12 weeks to figure out surgery.

    I was so confident in my decision for no reconstruction, but that confidence was built upon assumptions that are proving to be incorrect. The surgeon re-enforced my concerns about lumps and bumps. The reality is, that I’m not a skinny girl. There is only so much a breast surgeon can do – their priority it to remove the cancer and with a mastectomy to also remove all breast tissue. Even with no reconstruction, I’m looking at two surgeries – the first to remove the cancer, and the second to clean up lumps and bumps – in part because they cannot predict how you will heal. The surgeon strongly recommended a consult with plastic surgery and radiation oncology before I make a decision. So now I’m reconsidering my options.

    If radiation is not necessary – then I’ll be a strong candidate for immediate reconstruction. This would mean, during the same surgery I would have my breasts removed and a procedure done to replace my breasts with something. The something is either an implant or some fat from another part of my body (usually the stomach). Breastcancer.org provides a good high level description of the different reconstruction options.  Personally, I’d rather go flat then have implants – in part because my body tends to react negatively to foreign objects, but also because they need to be replaced every 10-20 years. There are a couple of options that use stomach fat (not muscle) that may actually work out for me (Diep Flap and Siea Flap). I despise how they advertise it on the comparison chart as getting a bonus “tummy tuck”, but in essence that is what happens. They move excess fat from your tummy and replant it in your breast – replacing the breast tissue with the tummy fat. If it works well, it gives a more natural look and feel as compared to implants – but the surgery time and healing time is greater.

    The surgeon did a good job of encouraging me to think beyond the immediate time – think one year, five years, beyond. One of my realities is that I’m not suddenly going to become a skinny girl. That isn’t in the cards for me. So, my body will inevitably have various rolls and folds. Previously, I wrote a bit about my concern for Buddha Belly. So I need to consider, what option is going to leave me with the better self-image of my body? Since being diagnosed, I’ve enjoyed a positive self-image (more so than before diagnosis), but I don’t know if that would still be the case after surgery.

    The other thing that is often pointed out is that you do not know how you will react post-surgery. You may not think of your breasts as an important part of who you are now, but that might very well change when you wake up and they are gone. This is one of the more frightening aspects of whole process. You could be ‘certain’ and wake up to discover that you were wrong. One of the common approaches is to leave as many doors open for surgery. So, rather than doing double-mastectomy with no reconstruction, they do a double-mastectomy with skin sparing techniques. The surgery takes longer, but it leaves you with more of your skin, making reconstruction easier. You can then decide later if you want reconstruction. Using this approach keeps the door open for options but also draws out the number of surgeries and the length of time you are being treated. If you make the reconstruction decision before the mastectomy and you are a good candidate, they can do the first two surgeries at once (reducing the number of surgeries and overall healing time, but increasing the healing time as compared to mastectomy alone).

    So now I shall wait again, for the next set of consults, to see what my options actually are. And then, maybe I’ll make a decision, but maybe not …

  • My Buddha Belly

    It may sound dumb but one of my biggest worries about not getting reconstruction is that I’ll look funny. I’ll have a flat chest but a buddha belly. I’m more scared about the buddha belly than I am about the flat chest.

    I know my choice for surgery. I know I ‘want’ a double-mastectomy. Want is such an odd word here – need might be more appropriate. I know I do NOT want to be hacked up and left oddly deformed, which is what a breast sparing lumpectomy would do. I also know that I do not want radiation. My skin is so very sensitive, that the idea of radiation burns freaks me out. So, for me, the best option is the double-mastectomy.

    I also know that I do not want to go through 2-3 years of additional surgeries. When you are first diagnosed with breast cancer, the surgeon presents you with one bit of “good news”. That “good news” is that insurance is required to cover reconstruction. What they don’t tell you is that reconstruction is not easy. You are not reconstructing healthy breasts. It isn’t a simple “boob job”. Reconstruction happens after they remove parts (or all) of your breasts, and then use radiation treatments to make sure that the cancer is gone. So they begin reconstruction with less than ideal material – you are not starting with healthy breasts, you are starting with damaged breasts. The reconstruction process can (and usually does) involve several additional surgeries, all done under general anesthetic. Each brings in new risks of infection and complications.

    Maybe, if I had a small mass in one breast, I might opt for a simple cosmetic surgery that in essence evens out my breasts – maybe. But I don’t have that option. I have two areas of cancer in my left breast, one rather large … which doesn’t leave much to work with. Plus I have cancer in the right breast. So radiation would mean radiation on both sides – a double whammy.

    So, for me, the best possible outcome is a single surgery – double-mastectomy with nice clean matching / symmetric scars. No extra lumps and bumps, but nice and flat.

    That much I know. But what scares me is the buddha belly. I have a great body image right now. I’m happy with how I look. I’m pretty sure I’ll still be happy without breasts (they are trying to kill me after all). But the belly … now that might be the challenge. I will need a new identity – perhaps after BCBecky  (Breast Cancer Becky) I will become BBBecky (Buddha Belly Becky).  Maybe if I can find some pride in that identity, I can be happy with my new body image. [i’m laughing through my tears as i write this].

    What also scars me is metastasis. So far, all signs are that I do not have node involvement. We won’t know until after surgery. The first line of treatment for node involvement is chemo – which I’m already doing. The second line is radiation. So, if surgery finds node involvement, I may need radiation (ugh). Once that is determine, we then start to look beyond the breasts for spread. Women can live for years with metastatic disease (like 10 years). Metastatic disease is often treated with chemo that is designed to slow the spread of the disease, but the quality of life with sustaining chemo scars me. Chemo is hard. I can do it now, because I have hope that it means that when I’m done with chemo and surgery that the disease will be gone. I watch other women live with metastatic disease and go through chemo so that they can live a little longer, mostly to watch their children grow up. For them, the pain, the yuckiness of chemo is worth it. I don’t think I could do that. For the first time in my life, I truly appreciate what quality of life means. I cannot see making myself feel awful (chemo) just to live longer feeling awful the whole time. I do not have kids, I do not have a reason to want to hold on. And I could not bare to have Scott see me suffer for years just to live an unhappy life. Now, this isn’t something I need to worry about now. My prognosis doesn’t look like that … from all signs I do not have metastatic disease, but these are thoughts that I do have … and I promised myself when I started this blog that I would write these thoughts and share them, regardless of how difficult they might be read or write.

    So, here is to living a long healthy life as Buddha Belly Becky … whoever that may be!

  • My bald head

    There are times when I find myself wanting to cover my head in something stylish – and I like looking good. There are times when I run out to take out the garbage and I cover my head so as not to scare or make uncomfortable anyone who I might happen to cross paths with in the corridors of the condo.

    Today, when I was out sailing, I mostly wore a buff and my Tilley hat.
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    I usually wear my Tilley hat sailing, so anyone who has seen me before would not notice any difference. There was a brief moment when I took my hat off for a picture – cause I really wanted a picture with the waves and my bald head – mostly for posterity. But I also wanted to feel the wind on my head. At this point, it was easier to put my buff and hat back on, as I needed my hands to hold onto the boat!

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    But, towards the end of the sail, when it was a little less windy and cold, I found myself wanting (craving) to talk off my hat so I could experience the feeling of the wind on my skull. I love the feel of the wind on my bare head. But I didn’t. I was afraid of how the people around me would react. I was not afraid of showing my bare head, but I didn’t want to make others feel uncomfortable.

    When in the car, I often strip off my head scarf. It is either too hot, and I want to cool down, or I’m on a slower road and I want to drive with the windows down. Again, that feeling of breeze on my bare skull is delightful. When I’m in the car, I’m not worried about how my baldness might make others feel (even when stopped at intersections). I’m conscious about it, but not worried about it.

    When I had a shaved head, I didn’t worry about it. I often went out without covering up. But now, my head is patchy. It is mostly bald, but still has some patchy bits of hair. Sometimes when I swim, I don’t worry about it and just go bare. Last time I swam, I wore my swim cap. I was OK with changing from my buff to my swim cap at the pool, and I even used the pool shower and exposed my naked head (but found myself hoping that when someone walked by that they didn’t look my way). But I didn’t walk to or from the pool with a bare head.

    So I’m of mixed feelings right now. There are times when I want to look fashionable that I am happy to have my head covered in a pretty scarf/buff/whatever. It is a part of the outfit and actually dresses up what I’m wearing. However, there are times when, I would rather not bother covering up. Although, from a practicality perspective, I do need to concern myself with sun protection. My bare head cannot go out in the sun for any length of time, but it certainly craves being exposed for short periods of time (and I do hate wearing a buff under my bike helmet, but I need the sun protection).

    So I wonder, how much should I worry about what other people might think? Do I worry about the discussions parents might need to have with their children after seeing me? Is that something that I should even care about?

     

  • Picturing a morning sail

    This morning we headed off to San Francisco for a morning sail on USA 76 with ACSailingSF. We almost missed the boat, arriving just as they were about to cast off. Fortunately, we got there just in time, and they nicely sent someone up to fetch us at the gate.

    Hopping on the boat, I was immediately happy. After a little bone pain yesterday, I wasn’t sure I’d have the energy to get out sailing – but rather than it tiring me, sailing refreshed me. It was nice and windy (at least at first) so we had an excellent, and thrilling up wind leg.

    We brought the new GoPro, which I spent some time playing with. Unfortunately, most of my pictures involve either my fingers or the string tether in the corner of the camera. Since you cannot see what you are taking a picture of, I didn’t quite realize it. So, I’ve chosen a few pictures that turned out pretty well.

    Scott resting after having been one of the grinders raising the main.

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    Under sail!

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    Playing with selfies on the Go Pro.

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    Some video of Scott grinding as we tack on the up wind leg.

    I enjoyed some time right up at the front being reminded regularly with mist that we were on a body of salt water!

    At one point I even took off my hat and buff to feel the wind on my bare skull and of course get a bald head picture 🙂

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    After our sail, we had lunch with some friends on Pier 39. Overall, a great way to spend a Sunday.

  • 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 🙂

     

     

  • 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!

  • Breast surgery

    I am coming to appreciate the roles of the different surgeons. I have not yet met with a plastic surgeon (PS), but will probably set that appointment up in the next few weeks just to get the conversation started. With breast cancer in the US, you are usually dealing with at least two surgeries. The first surgery is done by the breast surgeon (BS). This surgeon specializes in removing the cancer. You can have either a mastectomy (where they remove the entire breast) or a lumpectomy (where they just remove the cancer). That is an overly simplified explanation – as both surgeries depend on what you plan to do after – that is the reconstruction or no reconstruction. The two surgeons work together to help give you the look you want post-surgery. Some of the choices your breast surgeon makes depends directly on what you want the final outcome to be.

    So, it occurs to me after looking at several pictures of not too nice results post mastectomy/lumpectomy surgery, that I want a plastic surgeon that has experience doing trans female-male top surgery. You see, if the plastic surgeon knows how to do trans surgery well, then they would appreciate the importance of appearance. And if they have experience with female-male trans surgery then they would get what it means to be flat. I’m surprise to realize that appearance matters to me. I want to look good naked … I’m OK with being flat – not having breasts – so I don’t think reconstruction makes sense for me (at least that is my current thinking) – but I do want to look good naked. I want to be able to look at myself in the mirror and be proud of what I see (rather than sad). I’ve been warned never to look down … the downward view of your breasts is the view the only you see, and it will never be the same … everyone else sees the outward view!

    One thing that I find very interesting in this process is that I have a greatly improved body image. I would not have expected that result. I’m a lot less vain now – and a lot less worried about my other lumps and bumps – but I do want to be able to go topless. I don’t want to have to feel like I need to cover up because I have odd disfigured lumps and bumps where my breasts used to be.

    I’m reminded of my early days when one breast started growing before the other (midway through grade six if I recall correctly). I found myself wearing training bras because I did not want to look lopsided – I always used one of the stalls to change in PE class, cause I didn’t want the other girls to notice that I was lopsided. Now, I find myself wanting to be the poster child for women with mastectomy who choose not to reconstruct – I want to model swim suits for real women. A few months ago, I supported a Kickstarter campaign for Nettle’s Tale swimwear. I bought a swimsuit but never got around to sending them my sizing information (couldn’t find the measuring tape in my Ottawa apartment). After diagnose I reached out to the folks at Nettles Tale as I cannot give measurements now and I’m also not sure whether the suit I picked will work!  I threw out the idea to the folks at Nettle’s Tale swimwear of modeling for them as they are hoping to come out with a new line of swimsuits that support prosthetic boobs. They were excited about the idea, but of course nothing is planned yet (I don’t live in Vancouver, which poses a challenge, but also it will be a year before I’d be ready anyways) – but I thought I’d share that I am serious when I say that I want to be a swimsuit model when this is all done!

    I learned a new word the other day – foobs – which is short for fake boobs. I had heard falsies before, but foobs was new to me. Today I learned that the best place to buy a variety of foobs is eBay. Buying new can be rather expensive (eventually I’ll need to see what my insurance will cover). Since both the breast cancer and the trans community use them, there is a market for lightly used foobs. You learn something new every day!

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