BC Becky

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

Year: 2015

  • So you have this thing … lymphedema woes

    So you have this thing, and you are likely going to have it for the rest of our life, and there isn’t much we can do about it but … wear a compression garment and come back in a year …

    Really?

    I ended up sending another message to my doctors about lymphedema. They really didn’t tell me a lot. At the time, I wasn’t ready to hear that much. But now, a month has passed. I’m ready for additional information. The problem is, the internet is filled with misinformation. For every thing I read that I should do, I read another article that says I shouldn’t do it.

    So I send another bout of questions off to my doctor – starting by asking what websites are good for getting good quality information about lymphedema.

    One of the useful links was to this video clip on a presentation about lymphedema. I find that having watched it I have a better understanding of the relationship between the skin and lymphedema. I had thought of the lymph system as this shadow circulatory system, but had not appreciated the link between lymphedema and skin health. If you want to learn more, I recommended watching the video.

    And so, like in the video, I’m going to go and put my head back in the sand for a bit. I have too much on my plate right now. I’ll deal with this issue one step at a time …

  • 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.

  • At this time last year …

    At this time last year I was preparing for my first surgery. I wasn’t really scared anymore. I was ready – or at least that is what I remember of it all. I remember being scared early on, but not being scared on the day of. I remember giving myself permission to go into surgery kicking and screaming, and really only crying a little as they placed the third wire in – a rather painful process where the mammogram machine is used to squeeze your breast while they place wires into your breast to show the surgeons were the tumor are. You leave radiology with wires sticking out of you (like foot long wires protruding from your breast(s).

    A year ago tomorrow, I had my first breast cancer surgery. I don’t mark that date as my cancer free date because they didn’t actually remove the last of my cancer that day. They only got the first two tumors – the third was a small one that was not properly marked, so the wire wasn’t in the right place. It didn’t matter much, as the plan had always been for a double mastectomy, which would be done December 17th. This surgery was to test my sentinel nodes, do a devascularization of the nipple and areola, and biopsy the cells under the nipple.

    I remember waking up and my first question to my husband was “are my nodes clear?” – referring to whether or not they found cancer in my sentinel lymph nodes. Apparently I asked that question about 8 times as I was waking up from the surgery. Fortunately the nodes were clear, as were the cells under my nipples. This meant I was good to go for the nipple sparing double mastectomy with immediate DIEP flap reconstruction on December 17th (yup, that surgery is a mouth full to say, and was a long one to both do and to recover from).

    And so today, I look back on that time. I think about what I would tell myself – with the benefit of hind sight. I’d tell myself (1) drink more water, (2) finish your coffee a littler earlier cause they will take it away from you, (3) don’t bother with the pre-procedure nerve block as it was likely more painful than the pain it was blocking, (4) let Scott have one last grope of the girls, and (5) you’ll be OK, when it is all said and done you can order room service from your hospital room!

     

  • Thank you University of Chicago Medicine (@CureCeliac)

    The kind folks at University of Chicago Medicine Celiac Disease Center have a program where they send out care packages to those of us who are recently diagnosed with celiac disease (requires formal diagnosis either with biopsy or via current protocols). The Gluten Free Care Package contains some food samples, a bunch of coupons, and some educational materials. Of particular interest to me is the documentary they included – I’m looking forward to finding a few spare minutes to watch it – The Celiac Project – For those who do not qualify for the free kit, it looks like you can get a pretty nice package with the video and home viewing kit for $24.95 here.

    2015-11-16 19.31.25

    Another resource that was mentioned in the Care Package letter was a free eBook titled “Jump Start Your Gluten-Free Diet“. The resource is kind of buried on the Cure Celiac Disease website, such that I had not seen it before. Honestly, the title didn’t inspire me to read it, but looking at it, it is so much more than a book about gluten-free diet. It talks about what celiac disease is, about how it is diagnosed,  about what follow-up treatment you need if you have celiac disease, as well as the tips for finding hidden sources of gluten, how to grocery shop, and how to eat out. It is pretty much the best owners manual I’ve seen for someone with Celiac Disease – and it is FREE. So, if you or a loved one has celiac disease, take a look at this book – don’t let the title fool you – “Jump Start Your Gluten-Free Diet“.

    The other thing I did, on a whim, was sign up for three months of the Gluten Free Box deliveries from Love With Food. Someone from one of the online support groups I’m a part of recommended it – and showed a picture of her box. It looked pretty cool. I thought I’d enjoy getting a package in the mail once a month – plus it gives me a chance to try out different brands of gluten free products that I otherwise may not have thought to try. I’ll share more with you once I get my first package. Note, the link from my page should get you a bonus 40% the first month if you choose to purchase a box.

     

  • Learned helplessness

    In education, there is a theory that talks about “learned helplessness” (actually it is behaviorist psychology).

    Learned helplessness occurs when an animal is repeatedly subjected to an aversive stimulus that it cannot escape. Eventually, the animal will stop trying to avoid the stimulus and behave as if it is utterly helpless to change the situation. Even when opportunities to escape are presented, this learned helplessness will prevent any action. ~ Kendra Cherry

    Although this idea is presented as something that happens with animal behavior, it also happens in humans – and especially in patients. I find it in myself at times. I complain about an persistent ache or pain (interesting choice of words – complain rather than report – it is in part how I am made to feel when my aches and pains are dismissed). My doctors don’t know what to do about it, so they ignore it. Somehow, this translates in my mind to it being something that cannot be fixed – something that I need to just suffer through. After reporting the pain to many different doctors, I exhibit learned helplessness. I feel like there is nothing that can be done, so I stop trying. I stop reporting the the aches and pains. They don’t go away, I just stop telling the doctors about it – because I’ve learned that they cannot do anything about it. I’ve learned helplessness.

  • In-Training

    Back at Medicine X Ed, one of the speakers mentioned an online journal that was written and run by medical students, called In-Training. I tweeted out asking if they would accept articles written by patients? I was encouraged to submit something. And so, I’ve been reflecting on various experiences to see if they might be valuable to share specifically with medical students.

    Moments ago, my first article went live. It is a really short piece where I talked about my trip to the emergency room – you can read it here: Teachable Moments: An Evening in the Emergency Room.

    As I reflect back on my experiences of the last year and half, I have a few other stories that are likely worthy of articles. I’m glad I’ve found a venue for publication of them (besides this blog).

    Just as I was about to give up and not post something for today’s #nablopomo, I got the announcement that my article was live 🙂 … just goes to show how even when you are experiencing blog writers block, the universe throws you something to talk about …

  • Researching my illnesses

    At one point in time, I stopped researching my illness. I didn’t start researching about breast cancer. In the early days, I couldn’t research. I couldn’t mentally process the papers, but I also wasn’t willing to filter through it all. And I certainly didn’t want to hear all the bad stuff.

    Then at some point I started with reaching to research to help me analyze treatment choices. I started filtering through the literature to help answer questions I had.

    These last few weeks I’ve been hit by too many new things, that I just haven’t been able to keep up. I haven’t had the time to even begin processing the literature – but I need to start figuring at least some of it out. I need to get a better sense of what it means to have lymphedema, celiac disease, and a little bit of hypertension too. Ugg. Never mind the bit about having undergone treatment for breast cancer, and still facing hormone therapy to help prevent the breast cancer from returning.

    That being said, I’m in a little bit of a moment of quiet reflection. I’m getting stronger every day, and I’m reminding myself of that. I’m getting to the point where I can start thinking about doing things again. I’m working more again. I’m preparing to go back to my PhD studies in January. I’m even pushing myself to think about bucket list trips that our in the future …

    Today I attended the Bay Area Cancer Connections annual conference. I attended as an exhibitor, on behalf of another support group that I attend – Bay Area Young Survivors (BAYS) – this is the group that I wrote the book chapter for. I was not so successful at selling books, but I was success at telling a bunch of people about the group – which really, was my primary purpose for being there. I even made a couple of new connections.

    I reflect back on last year’s conference, and how I was in such a different place last year. The conference was a little earlier in the year, such that I was still on chemo. I learned a lot at the conference, but there was also a lot to process. I remember leaving feeling heavy with thoughts. This year I thought the presentations were better. They were more informative, but also with a mind to things that everyone cared about – rather than things that only applied to a subset of the audience. I think they did a better job of designing the conference content.

    I also chose to leave early this year. It was nice outside, and I wanted to spend some time while it was still daylight enjoying the outside. I also didn’t feel the need to hang around. The last scheduled session had a presentation on lymphedema that I think might have been interesting. The problem is, that there is so much mis-information out there. So little is known, and so much is shrouded in myths about what to do, that it is difficult to separate out the good information from the bad. The doctor I see is one of the world specialists in lymphedema. I trust what he has to say. I do, however, need to do some more of my own research in the area – just so that I know and understand my own illness better. But until I get around to it, I am taking my own advice – I’m deciding who I trust (in this case, my lymphedema doctor) and trusting that he is guiding me appropriately. I’m lucky to have access to such a specialist, and to be able to delegate the treatment of my illness to someone who is an expert at it. However, I’m also reminded that I am still the expert at my body … so I cannot delegate too much.

    And so, with that, I have some reading to do …

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