BC Becky

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

Tag: #nablopomo

  • 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.

  • 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 🙁

     

     

  • Does someone in your family have celiac?

    I’m reading the University of Chicago Celiac Disease Center’s free ebook Jump Start Your Gluten Free Diet: Living with Celiac/Coeliac Disease & Gluten Intolerance. As I read I find I’m a little frustrated. I wish someone had told me sooner that celiac disease was a genetic disease – that is, there is a gene mutation that makes you at increase risk of developing the disease at some point in your lifetime (HLA-DQ2 or HLA-DQ3). I get a little angry as to why not one of my health providers thought to tell me this – when I clearly indicate on my file (and mention regularly) that my father has celiac disease. But then I realize, his diagnosis was so long ago (20 or so years). They did not know then what they know now.

    HLA tests for the class II heterodimers DQ2 and DQ8 are commercially available. Note that while the DQ2 or DQ8 genotype is considered necessary to develop CD, the presence of either one does not confirm the diagnosis. Conversely, the absence of both HLA types has a negative predictive value of over 99% and virtually excludes the diagnosis of CD. (ref here)

    Very few health professionals actually know anything about celiac disease, and very few know that there is a simple genetic test to determine if you are predisposed to it. I found out that I had the genetic link only a few days after my dermatologist called to say “it looks like you might have a wheat allergy”. I had chosen to do the 23 and me genetic testing to see if there were any indicators (or counter-indicators) for me taking tamoxifen (relating to breast cancer treatment options). Since the tests take 5-6 weeks to return, I had almost forgotten about them. When the results did come back, one of the generic risk factors listed was for HLA-DQ2-Related, which indicated that I had the variant so I was at higher risk for developing celiac disease. Here is the thing, this is a simple spit in a tube, pay $200, and wait 6 week test. It is relatively inexpensive and not invasive. If you have a family member who has celiac disease, you should ask your doctor for this test (and if they say no, then 23 and me is an option!).

    If someone is positive for the gene, then they should be tested regularly (yearly) for the anti-bodies. This is because celiac disease can develop at any stage in ones life – it doesn’t not necessarily present immediately.

    The two key tests to run are the DGP-IgA and DGP-IgG. These antibodies are actually more promptly and fully responsive to a strict gluten-free diet, so their numbers should be as close to zero as possible, indicating a minimal antibody response to gluten. (page 25)

    Again, these are simple blood tests. Minimally invasive. These are also the tests that someone who does have celiac do on a regular basis to ensure they are maintaining a gluten-free diet. The reason to test regularly is to help confirm that you are gluten-free – which isn’t always obvious. If you think you are, but you are not, then you need to examine your diet (and medications and supplements) to see where you are getting the hidden source of gluten. If you are positive for the gene, then this test can help determine if you have developed celiac disease (assuming you are eating gluten).

    And so, with that, I am now telling all my close blood relatives. If you haven’t been tested for the celiac gene, you should ask your doctor for the test. You may not have celiac disease, but you may also have silent celiac (disease with no physical symptoms). Other illnesses and allergies may be celiac.

    On a side note, I’m happy to report that with a gluten-free diet, I can eat a lot of things that I thought I was allergic to. I’m able to eat tomatoes again, and quinoa, and kale. I’m also tolerating lactose (not needing to take pills to eat most dairy). So many yummy foods that I had to cut out of my diet because I thought they were the cause of various symptoms (mostly blisters and eczema, which turned out to be dermatitis herpetiformis – the skin infestation of celiac disease – and why it was my dermatologist that made the initial diagnosis).

  • Which doctor is in charge?

    I find myself often wondering, which one of my doctors is in charge? Which one is “the most responsible physician”?

    In my case this all gets complicated. I see a lot of doctors and nurse practitioners, across two different systems (Stanford and Palo Alto Medical Foundation). My medical conditions have overlaps, so when one doctor orders something, I’m often having the results sent to other doctors.

    My most recent test was a bone scan. This was done as a baseline measure before I start any additional hormone therapy. It was also done because one of the potential side effects of untreated celiac disease is osteoporosis. I figured it would be good to get a baseline measurement. So, when I mentioned my concern to my gastroenterologist (celiac specialist), she placed the order. However, since my oncologist is the one I work with on the hormone therapy plans, I asked them to send him a copy of my results.

    Last Wednesday I was up at Stanford yet again to see my surgeon’s assistant. I’ve had persistent pain in my left shoulder almost constantly since my last surgery in March. I’ve complained about it frequently.  Of course, this also leads to a bit of a freak out, as the pain is coincidently right where my largest tumor was – so whenever it flares up (like it did last week), I enter a spiral of self-doubt and worry/panic. Is it cancer? There is something wrong! Except, that there is nothing wrong and it looks nothing like cancer. This time, my surgeon’s assistant referred me to the pain management clinic (integrative medicine). There is a theory that acupuncture might help finally make the pain go away, which would reduce this stupid spiral. She also mentioned that she’d pass along the info to my oncologist and psychologist – just so that everyone was in the loop. Of course, this made me feel stupid. I felt a little embarrassed, that this was nothing yet again, and now my oncologist would know that I was in seeing my surgeon’s assistant for nothing. Logical me, knows that it isn’t nothing and that I needed to do it, but still, when it turns out to be nothing to worry about, it makes all the worry seem like a waste.

    Later that day, I had to return to Stanford cancer center to pick up a couple of compression sleeves (damn lymphedema). As I was waiting for the nice lady to finish looking things up and find a few things, my oncologist spotted me and knocked on the door (it was locked as someone else was being fitted). He called me over with a comment about “saving him from having to call me” … of course, embarrassed me is in a panic state. Why is he calling me? Boy do I feel like an idiot. Unfortunately, it had nothing to do with my morning visit. My bone scan results came back. My numbers are a little on the low side (I have no idea what they are as the test results haven’t been released to me yet). His comment was “nothing urgent, we are planning for 30 years from now, not 30 days” … so, in order to ensure I don’t end up with osteoporosis issues 30 years from now, I’m to double up on my calcium and vitamin D supplements. All my blood tests indicated that I was fine on both accounts, but apparently, that isn’t translating into bone density. So I’ve doubled up for the time being and we’ll see what the future holds. There is some theory that as my body detoxes and heals from the gluten exposure, it will self-correct on things like malabsorption of calcium.

    This brings me back to my question – which doctor is in charge? The doctor that ordered the test isn’t the one that told me the result. Neither doctor has released the report to me, so I don’t yet know what the official results of the bone scans were – I just know that they were low. I also don’t know which doctor will formulate a plan regarding this … probably yet one more doctor (an endocrinologist) as it is yet one more speciality.

    Friday I saw another set of health providers for totally different reasons. I had a L-Dex scan. This was my first measurement, meant to be a baseline. Ideally, they want to start taking these measurements on women before they have surgery involving lymph nodes. It may provide a way to help predict which women are at risk for lymphedema. My first measurement doesn’t mean anything on its own. I will do another measurement in three months. It will be compared to the first to help determine if my lymphedema is improving with compression therapy.

    I then went over to see the therapist that manages my anti-depressant medication. She was awesome. For the first time in a long time I felt like someone was looking at the whole me, and not just the part of me that is their subspecialty. She was concerned about my weight gain (upward trend since August, which might also be related to eating mostly gluten-free), but also my blood pressure. With those two items in mind, she recommended a change in my anti-depressant meds, as the one that I’m taking right now increases appetite (great when you are on AC chemo, not so great otherwise). Really, she has been the first person to actually do something about my weight concerns. I’ve raised the issue. My other doctors make comments like “lose weight” without giving me any tools to achieve that – or worse – they put me on medications that cause weight gain and then tell me to lose weight – it is really frustrating. So, I was happy to have a care provider actually look at the whole me, appreciate that I exercise a lot already, I eat healthy, and my meal choices are even more limited by the removal of gluten.

    In some ways this post demonstrates yet another typical week in my post-cancer treatment life. I may not be fighting the cancer anymore, but I certainly am fighting the after-effects of cancer treatment. In some ways, I’m still in treatment. I don’t completely understand why hormone therapy isn’t considered treatment – probably just a pragmatic thing, you wouldn’t want to be told that treatment lasts 10-years. And for some women, hormone therapy has only a few minor annoyances – it certainly isn’t as bad as chemo. And so, I continue to reclaim aspects of my previous life, while juggling way more health related appointments than I’d like, and I try to get healthy both physically and mentally. This week, I’m a little stronger.

  • Heard a statistic the other night …

    I heard a statistic the other night. I’m not sure of its source, but I wanted to demonstrate a logical fallacy.

    The statistic I heard was that 70% of women with metastatic breast cancer were diagnosed with metastatic cancer at initial diagnosis. What this means is that 70% of the women living with metastatic breast cancer were metastatic when diagnosed. What this does not mean is that 30% of women diagnosed with breast cancer are early stage. It also does not mean that 30% of women who are diagnosed early stage will become metastatic.

    You see, in each case the denominator is changing. They are independent statistics. In the first you are saying that of all the women with mets today, 70% had mets when they were diagnosed.

    The second statistic is about all women. So the numbers are in no way related to one another.

    The third statistic is about all women who were diagnosed with early stage breast cancer. So again, the numbers are  in no way related to another another.

    Each statistics is fundamentally different – they have different denominators. One of the numbers tells you nothing about the other numbers, because the groups involved are fundamentally different.

    So, it leaves me wondering, where does the 30% of all breast cancers will progress to metastatic come from? This is a great mystery, but I found myself wondering, is it simply a matter of someone not understanding the math? Someone not understanding that 70% of something does not imply 30% of something different, even if that something different kinda sounds like the opposite of the 70%?

    I don’t know, but I’ve learned to be careful when I hear numbers thrown around. So I make no promises that any of the numbers that I’ve stated above are in any way correct numbers. I just wanted to demonstrate the point that it is easy to think numbers are related to one another, when in fact they are completely different statistics.

  • I’m doing OK

    Life has been a little crazy lately. I cannot believe that I’ll be headed back to Canada next week for a brief visit with family, but also to run a few errands (visas, passports, textbooks).

    This will be my first flight after the lymphedema diagnosis. In some ways, I’m nervous about it. I’ve flown quite a few times after surgery without a problem, but I didn’t have lymphedema then. I do now. So now I have to take precautions. I need to wear sleeves (which thankfully, I now have several pairs of) whenever I fly. I wear sleeve on my left arm anytime I’m awake anyways. But for the purpose of flying, I also need to wear a sleeve on the right. I also need to be more careful about lifting bags.

    Mentally, I’m doing well most of the time, but every now and thing, something tweeks. This time, it is a consistent pain in my left chest. The pain is in the same spot as my primary tumor, so it triggers those memories. I’ve brought it up to my doctors many different times. They all confirm that it is NOT cancer. I am doing OK. However, the pain continues. This time, the PA (my surgeons physician assistant) has referred me to the pain clinic – they are calling it “post surgical pain”. I can handle that. It has been almost a year since the major surgery, so the pain should have settles by now. So, I’m crossing my fingers hoping that the pain folks can get to the bottom of this issue.

    When I’m tired, the pain triggers an emotional response. My mind then starts to catastrophize. I start thinking that I’m having a recurrence. That that cancer is back and in my bones or that I have a large lymph node that is cutting off the circulation in my arm. My mind starts down that path, and when I’m tired I don’t catch what is happening. When I’m not tired, I can usually see the thought path and intercept it. I can see that what my mind is doing and stop it, tell it that there is likely a non-cancer reason for the pain. I trust my doctors. It is in their best interest to keep me safe and healthy – it doesn’t make sense that they would ignore an important symptom – and so I must remember to trust them.

    The biggest challenge with this episodes is the amount of time and energy it takes. I feel the need to be diligent, but that means making doctors appointments and seeing doctors. It means intentionally prioritizing exercise, and having that cut into the productive hours I have for work. It is difficult finding the post treatment balance.

    And so, with a better night’s sleep – I’m doing OK. I’m dealing with various aches and pains in my body and not assuming that every one of them is cancer. I’m working really hard to move on. To get back to my academic work, and to do more teaching. I’m exploring opportunities as they present themselves.

css.php