BC Becky

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

Year: 2015

  • Memories

    As my one year cancer free day is fast approaching (December 17, 2014 is the date the last of my cancer was removed from my body), I am finding myself having flashbacks to my diagnosis day. I am not remembering the storm the week before surgery, nor how low I was feeling. Instead I’m remembering some of my thoughts upon initial diagnosis.

    I am remembering how I thought to myself If I get treated at Stanford does that mean I get to buy the sweatshirt? Finding it tacky wearing university clothing for schools that I’m not associated with. Fortunately, I’m associated with enough schools that my sweater collection isn’t lacking.The answer to that question was a resounding yes. I wore my Stanford hoodie to almost every doctors appointment and chemo session. Now I’m wondering Now that I’m one year cancer free can I buy myself a new Stanford sweatshirt? Or do I move on and just get sweatshirts/hoodies for the schools I’m teaching at/studying at?

    As I write the question, I reflect on just how trivial it is. Not a big decision.

    The other memory I’m having is that of Window Shopping. I recall that morning (before treatment, while we were still waiting for pathology results), walking through Sausalito, finding myself staring at women’s breasts. Scared. Not knowing what was going to come next.

    In the midst of these flashbacks, Facebook reminds me of the rain storm at this time last year. It rained heavily for three days straight. The rain would mean that the emergency rooms were busier than normal for this time of year. It also meant that the hospital was a complete zoo when it came time for me to check-in for my surgery.

    Those are my memories for this time of year.

    Another lifetime ago, in December 2008 we were visiting Antakya Turkey. We were preparing to get back on our bikes and ride into Syria. That was a lifetime ago!

     

  • Feeling strong but cramping…

    Not sure if it is the gluten-free diet (except for when I get accidentally exposed – not sure yet what got me earlier this week). Not sure if it is just that I’m fitter now. Not sure, but it is good.

    Usually when I take a week off exercising, my body back-slides. I end up not where I left off. So, it was with that trepidation that I jumped in the pool yesterday. I fully expected to only be able to swim half or maybe two-thirds of what I last swam. So, I was pleasantly surprised when I managed to almost make the same number laps as my previous swim which was two weeks prior. I’m now swimming 800m in the 25m pool.

    I usually end up having to get out of the pool because of muscle cramps rather than any other type of fatigue. I drink a full electrolyte drink before getting in the pool, and I have my water bottle handy – often drinking most of it while swimming. I’m still getting muscle cramps – either in my feet or calves. For all my swimming friends, I’m open to suggestions. My muscles are well warmed up as I usually do 30-40 minutes on some form of elliptical/arc trainer first. I’m also taking calcium, magnesium, and zinc supplements. Any thoughts on what else I might do to prevent muscle cramps in the pool?

  • Today I pause and reflect

    Today I pause and reflect. It is December 6. It is the 26th anniversary of the Polytechnique massacre – when 14 women were killed in an engineering school in Montreal, Canada.

    I was a first year student at the University of Victoria at the time (December 1989). I was studying physics. It could have happened at my school too. It could have been me.

    And so, every year, on December 6th, I pause and reflect. It is especially poignant given the number of mass shootings that happen at schools in the US every year – so many that it is no longer considered news, we are desensitized to it. It wasn’t even talked about at the Big Ideas Fest conference I attended these last few days. Here, it is the elephant in the room.

    I will not repeat the name of the shooter here. He doesn’t deserve it. I will, however, share the names of the victims. They are the ones that should be remembered:

    • Geneviève Bergeron (born 1968), civil engineering student
    • Hélène Colgan (born 1966), mechanical engineering student
    • Nathalie Croteau (born 1966), mechanical engineering student
    • Barbara Daigneault (born 1967), mechanical engineering student
    • Anne-Marie Edward (born 1968), chemical engineering student
    • Maud Haviernick (born 1960), materials engineering student
    • Maryse Laganière (born 1964), budget clerk in the École Polytechnique’s finance department
    • Maryse Leclair (born 1966), materials engineering student
    • Anne-Marie Lemay (born 1967), mechanical engineering student
    • Sonia Pelletier (born 1961), mechanical engineering student
    • Michèle Richard (born 1968), materials engineering student
    • Annie St-Arneault (born 1966), mechanical engineering student
    • Annie Turcotte (born 1969), materials engineering student
    • Barbara Klucznik-Widajewicz (born 1958), nursing student<

    ~ Wikipedia

  • And with that, #nablopomo ends …

    I am proud to say that I successfully managed a blog post per day for the month of November. Unlike NaNoWriMo, the requirement wasn’t for a specific number of words. There wasn’t a way to finish early and meet the requirement. Instead I had to blog every day.

    In the beginning, I thought I’d blog both here and at my academic blog – http://rjh.goingeast.ca. Unfortunately, as work got busier, something had to drop. I chose then to drop my posts at my other blog and continue blogging here. In part because i had so much more inspiration for this blog. I had a lot more to draw upon for inspiration.

    I did find #nablopomo useful as a way to encourage me to write every day. It was a good way to help me get back into the practice of regular blogging and regular writing – two things that I’m going to need to do when I go back to my PhD studies in January.

    I do not think that I will be continuing to post to this blog on a daily-basis – however, I do expect that I’ll be blogging every few days. I’ll also be posting more over at my academic blog which I have been neglecting lately – as I had to prioritize writing a post per day for this blog.  With every choice I make to do something, it is also a choice to not do something else. There are, unfortunately, only so many hours in the day.

    And so, with December being upon us, I shall plan to spend more time with my hubby, more time in nature, and more time mentally preparing to re-engage with PhD studies …. life must go on.

     

  • The other 70 ish percent

    It occurs to me that there is a lot of dialogue about how approximately 20-30% of early stage breast cancers progress to metastatic disease. I ran into a bit of conflict in a discussion group the other day because I asked the organization to do some more research around the myth of 30%. With that I’m referring to how people use the 30% number as if it were a known fact, when we currently don’t have any accurate statistics to support it as fact. I’ve blogged about the dangers of throwing out scare tactic statistics on those of us living with the aftermath of treatment.

    This 30% is used to rebuff the message that “early detection saves lives”. Unfortunately, for 20-30% of women, early detection makes no difference. For them, the disease will progress to metastatic disease regardless of what they do. However, what about the other 70ish percent? Does early detection make a difference for them?

    The point of this post is to talk a little bit about what it means to hope to be in that 70%. I hope that early detection does make a difference. As I learn to live with the aftermath of very invasive and traumatic breast cancer treatments, I am left reflecting – I am left hoping – the only way that I can personally consolidate the assaults on my body is to accept that had I done nothing, I would have died. So, for me, early detection did save my life (at least that is necessarily my current view). Early detection wasn’t a wasted effort.

    So, maybe early detection doesn’t save all lives, but to say it saves none would again be unfair to those who have survived breast cancer treatment. It would be unfair to those of us who live through the side affects and aftermath of treatment.  We need to believe that acting quickly to treat our not-yet-metastatic breast cancer was the right thing. We need to be believe that early detection helped reduce the severity of our treatments and the spread of our disease.

    I won’t be able to tell you that early detection saved my life until I die; however, I will tell you that I believe that I caught my breast cancer early. I believe that early detection meant that the cancer had not spread to my lymph nodes before I sought treatment. It reduced the impact of my treatments (I didn’t need radiation), although my treatments were pretty extreme (chemo and bilateral mastectomy) – and now hormone therapy (which is a misnomer as it involves the blocking of hormones rather than providing hormones). For me, I have to believe that early detection saved my life, cause otherwise, all the hell of treatment was for nothing, and I simply cannot believe that.

    So, for 20-30% of women, early detection will make no difference. For the rest of us, it will save our lives.

  • Today I wanted to share these posts about food from a dying cancer patient

    Today, I want to share with you two very well written and informative blog posts by Ann at Breast Cancer? But Doctor …. I hate pink!

    In the first post Ann eloquently talks about the challenge of eating while experiencing what she informs us is known as cancer anorexia cachexia. As someone who is going through the end-stages of terminal cancer, Ann generously shares with us her experiences. She describes what it feels like to be that person who no longer has any desire for food. She explains about how it is different from not having an appetite.

    As someone who loves food, I cannot imagine being in that position. I cannot imagine what it would feel like to no longer have any desire to eat. I cannot imagine what that feels like, but Ann does a good job helping me understand what she is experiencing.

    In her second post, she provides useful tips for caregivers. Even more important than understanding her experience, giving loved ones the tools to know how to help is immensely valuable. The job of the caregiver is never easy – so having a sense of real concrete things that one can do to help really matters.

    So, thank-you Ann for sharing your experience. Your blog posts have touched me.

  • Cleaning out Mom’s kitchen (gluten-free in Canada)

    Yesterday we (hubby and I) helped mom clean out her kitchen. The goal was to make it clear what was gluten free and what wasn’t. Hubby did most of the hard work, as I didn’t want to be too close to the open flour and worried of cross contamination – plus, he is just really good at sorting through stuff and separating out stuff to be kept and stuff to be tossed (at least when it isn’t our stuff – it is a lot easier when someone who isn’t attached to the stuff helps with the sorting process).

    I want to note that my mom lives in Canada. Food manufacturers are different in Canada and the US – so most of the links in this post will apply to those living in Canada.

    My job was to look things up and find out if they were gluten free or not. There were some real surprises in the process. Chicken stock is a real problem. Barley is often used in the making the stock. The real surprise to me was dates. I love dates. I had no idea that wheat flour was often used as an adjuvant filler when hand pollenating dates.

    Fruit set resulting from the use of mechanical pollination is usually poorer than that following hand pollination, but fruit quality and yields are found to be equal as a result of decreased thinning of the mechanically pollinated inflorescences. Furthermore, it is worth mentioning that mechanical pollination requires approximately 2 or 3 times more pollen than manual pollination. To overcome this problem, date growers are mixing the pollen with adjuvants, also called fillers, such as talc, bleached wheat flour, walnut-hull dust with a ratio of pollen/filler 1:9 or 1:10. (Zaid & de Wet, n.d.).

    I did, however, find that those of us in the US can get gluten-free dates from Nuts.com. When I get home I’m going to have to check all the dates I have to see if they contain gluten. I had no idea on this one!

    I also got to practice looking things up on the Internet. When presented with a can of something, I search for it using the string “Is gluten free?” or “does contain gluten?”. I found that many of the manufactures of canned goods have websites that list which of their goods are gluten free. Unfortunately, store branded canned goods often did not have websites that indicated whether items were gluten free. Instead, store brands opted to sell their premium “gluten-free” labelled versions of products. At least that seems to be what the website indicated.

    I wanted to make a call out to manufacturers, who are making this process a lot easier. Kraft is committed to labelling any ingredient that may contain gluten. The challenge with the announcement is that it is dated 2015. They don’t say when they started (or will start) with the gluten labelling. Whether this was done for altruistic or regularly reasons, I applaud them for making a statement clearly in an announcement that can be easily found by a Google search. In many cases, it was difficult to find what was and was not gluten-free. When given that option, I had to assume it was not safe to eat.

    Other useful links to Gluten-free product lists include:

    When I have a product that I like and it is unclear (e.g. Better than Bouillon), I use twitter to ask the manufacturer directly. Unfortunately, a bunch of their products do contain gluten (soup bases are always a challenge). Using twitter we can usually get an answer within an hour or two. The other option is to phone. I’ll have to give that a try too.

    The process isn’t useful when you are actually at the grocery store, as it takes too long. It is useful when you have favourite products or a new product comes out that you want to try and you want to see if it is OK to eat. It will be nice when labelling gets a little better, and gluten is clearly marked on all products! Personally, I like the practice that is done in the UK where allergens are listed in bold, making it a lot easier to identify safe foods.

  • Lymphedema – attempting to separate fact from fiction

    There is still very little understood about lymphedema. Because the largest population of those who suffer from secondary lymphedema (that is lymphedema as a result of surgery for something else) are breast cancer survivors, many of the studies involve the breast cancer population.

    I want to highlight that there is a difference between prevention of lymphedema for those who are at risk (or high risk) and treatment for those who already have lymphedema. Recommendations for those who do not yet have lymphedema are not the same as for those who have it.

    On a side note, I had someone tell me I should take x supplement because they took it during chemo and didn’t develop neuropathy. As a result, she concluded that the supplement would help cure my neuropathy. This highlights a fundamental misunderstanding about the difference between prevention and treating what is. It also highlights that she didn’t understand that she didn’t understand the differences between correlation and causation. But I digress.

    I was hoping to get a better understanding of the face versus fiction of lymphedema from a review article that my physical therapists (also lymphedema therapist) mentioned (see Cemal et al, 2011). Unfortunately the article was more focused on the prevention of lymphedema rather than the treatment for those who already had lymphedema.

    In reading the article I did find myself wondering if my lymphedema in my left arm is related to my DIEP surgery – and more specifically that my left arm was used for the blood oxygen level testing. After surgery my inner left forearm was one giant bruise with a bunch of pin pricks in it. I recall from my first couple of days after surgery that it was one of the areas of my body that hurt the most – even more than my giant stomach wound.

    One of the challenges with lymphedema is that it can develop later (typically 12-18 months) after the procedure that may have caused it. So, it could very well be that my left arm lymphedema was triggered by the large number of needle pricks during the 10-hour surgery. I could also have been caused by the exercise class I went to the week before it developed. Or the long bike ride that resulted in some shoulder cramping. So many different things could have caused it. We just don’t know.

    To summarize the findings of this systematic review, there is limited evidence to support the recommendation that venipuncture [needle sticks such as blood draws] should be avoided in patients with a history of lymph node surgery. Similarly, there is a paucity of evidence to support the preventative measures regarding limb constriction, elevation, heat and cold, and air travel and use of compression garments when flying. On the other hand, we found good scientific evidence (level 1 and 2) to support the recommendation of maintaining normal body weight or avoiding weight gain in patients who are at risk for developing lymphedema. Similarly, there is strong scientific support for participation in a supervised exercise regimen both in patients with lymphedema and in those at risk for developing lymphedema. ~ (Cemal et al, 2011, p. 549).

    For me the elephant in the room is weight gain. Medications and surgeries have all resulted in me gaining more weight than I’d like. I’m active. I have healthy eating habits, and yet I am carrying more weight then I think is healthy. I’m hoping that a shift in medications will help that – as my weight is starting to cause other complications. Added to the mix is that most celiacs who eat gluten free after diagnosis gain weight as the body starts to absorb nutrients properly. I’m hoping I’m the exception on that one … Additional weight gain would be unhealthy for me.

    One other quote from the conclusion is important “The lack of clarity for effective preventative measures likely contributes significantly to patient fear and anxiety.” (Cemal et al, 2011, p.550). I think this is really important. If you read too much on the internet, you will hear lots of scare tactics about lymphedema. Don’t do this or don’t do that or you might get it. The problem is, as the article indicates, there is actually little evidence that demonstrates that any of the preventative measures make any difference what so ever. This matters, because if you end up with lymphedema, and end up asking why did this happen to me? you start asking what could I have done differently? It leads to a sense that you did something wrong – which isn’t necessarily the case. In addition, if you haven’t had it, you can unnecessarily become afraid of doing things as they might lead to it. That fear and anxiety is unnecessary. As breast cancer survivors, we have already have enough things to be afraid of, we don’t need to add lymphedema to the list. 

    I was in the low risk category. I did what my doctors told me to do. I still got lymphedema. I don’t know why. It doesn’t really matter why. But I also don’t think you should do anything different because I got lymphedema. There simply isn’t any evidence out there that says this will cause it or this will not.

    Reference

    Cemal, Y., Pusic, A., & Mehrara, B. J. (2011). Preventative measures for lymphedema: separating fact from fiction. Journal of the American College of Surgeons, 213(4), 543-551.  doi:10.1016/j.jamcollsurg.2011.07.001

  • The Celiac Project – and antibodies

    On the plane yesterday I watched The Celiac Project – a documentary about celiac disease. It was one of the things that arrived in my care package from the University of Chicago Celiac Disease Center.

    There were a couple of key learnings for me in the video. The first was to really internalize what it meant to have an auto-immune disease. It isn’t so much the gluten that is the problem – it can cause some short term discomfort – rather it is the anti-bodies that the body produces in response to the gluten. This is why it is an auto-immune disease and not an allergy. The body produces antibody that in turn make you sick. These anti-bodies are the source of long term health problems (I need to do more official research on these long-term problems). Some of the long term problems include: osteoporosis, stomach cancer, lymphoma, other autoimmune diseases).

    This is why “cheating” or eating gluten occasionally is a problem. It can take months (over a year) for your antibodies to drop. Eating gluten weekly means that your antibodies never get a chance to go down. As per my last post, it only takes 1/8 of a tea spoon of flour to feed the antibodies. The Anti-tissue Transglutaminase Antibody; tTG; tTGA blood test is used to first screen for celiac disease (it is a simple blood test) and then again to monitor adherence to a gluten free diet.

    I hate the word adherence or compliance, as in both cases it sounds like the patient is intentionally doing something wrong. In some cases, that is the truth. They are cheating by intentionally ingesting gluten now and then (take a celiac holiday). But in other cases, they are getting gluten in their diets accidentally. They don’t know the source of gluten.

    Another interesting comment in the video was that a “gluten free diet wasn’t healthy for those without celiac”. This is an interesting statement. In part this is because a lot of gluten-free alternatives are loaded with sugar and fat. But if you are eating mostly naturally gluten free meals, than I do not understand the comment about the items being unhealthy. It is an area where I struggle – what does health mean for me? How is my healthy meal different form a healthy meal for my husband who does not have celiac disease?

  • A little gluten won’t hurt will it?

    Research shows that anyone with celiac disease will have a reaction to ingestion of gluten when it reaches just 100 mg per day. Some people have been shown to react with as little as 10mg per day. In either case, we are talking about a very small amount: the equivalent of 1/8 to 1/64 of a teaspoon of flour.

    There are about 600 mg of flour in 1/8 teaspoon and in it there are about 80mg of gluten. Thus, 10 mg of gluten is just 1/64 of a teaspoon. Conversely, if a gluten-free product measures to 20 ppm per serving it would require ingesting of more than two pounds of that product in one day. (page 122)

    I knew that cross contamination was a problem, but I didn’t really understand the scope of it. I had heard that working in a bakery that handles flour was not recommended for those with celiac disease, as you are likely to inhale too much flour. 1/8 of a teaspoon is a crazy small amount.

    I’m also learning that when I eat out I need to be more specific. I need to start validating that things to do not contain any wheat, rye, or barley derivatives. I need to validate that kitchen processes don’t cross contaminate. I need to validate that sauces to not contain soya sauce, unless that soya sauce happens to be gluten free.

    Cross-contamination occurs in two primary instances and should be considered at any restaurant. One may occur when a meal is prepared in the same frying oil as other foods containing possible allergens. The second may occur when food particles are transferred from one food to another by using the same knife, cutting board, pan, grill or other utensils without washing the surfaces or tools in between uses. (page 179).

    I haven’t yet figured out the right words to use to explain this in a restaurant context. I always tell the waiter/waitress that I have celiac and that the food must be absolutely gluten free. I try to ensure that they know that it cannot be cross contaminated. When I’m eating at a local place, I can emphasize that if the food makes me sick I will not be a return customer – this doesn’t carry as much weight when I travel.

    I am travelling next week and I am nervous. I’m a little afraid that somewhere along my travels I’ll meet with cross-contamination (as we call it in the celiac world – being glutened).

    A friend asked, what happens when I accidentally ingest gluten? Unfortunately, I don’t have an immediate response – so I don’t know to stop eating it when it is happening. I also am never 100% certain where I got the cross contamination. I usually get hit with fatigue within an hour or two of exposure. The next day I get smelly stools and diarrhea. I get some swelling in my stomach, which causes my belly button to move to the right (in part this is because of my breast reconstruction surgery, which has created a lot of scar tissue in my stomach, making it swell on the left side only). Fortunately, I don’t get a lot of swelling. Then a day or two later I get a bout of dermatitis herpetiformis. May get really painful blisters on my hands that last a day or two then go away. I get rashes around some of my scar tissue that can take weeks to clear up (I’m still waiting on that, as I haven’t successfully gone two weeks without getting glutened).

    My physical symptoms are rather minor – such that they would not be enough of a deterrent to keep me from eating gluten occasionally – although, honestly, the dermatitis herpetiformis is almost bad enough to be a motivating factor in and of itself. The larger issue is the long-term impacts of gluten exposure. This is the part they don’t tell you much about in the books because they don’t want to scare you. With each incident of gluten exposure, the villi in my small intestine flatten. It can take months (or 1-2 years given my age) for them to heal. The villi are what your body needs to absorb nutrients. When they are flat, you can suffer from malnutrition – and all the long-term effects of systemic malnutrition apply. So, I may experience some temporary discomfort when expose, that isn’t my biggest worry. My bigger worry is with the long-term systemic damage to my body – a body that is already having to deal with long-term systemic impacts of chemotherapy.

    And so, with that, I ask that you appreciate that I’m not kidding or joking when I say that I need a gluten-free meal that is not cross-contaminated. I’m not trying to be a pain. I just want to have a nice meal that doesn’t make me sick 🙁

     

     

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