BC Becky

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

Year: 2015

  • Virtually Connecting at QUB ePatient Conference (#qubept)

    After all the excited from the ALTC Conference in Manchester, I flew back to Belfast to attend a conference on ePatient – The medical, ethical and legal repercussions of blogging and micro-blogging experiences of illness and disease (#qubept). It was a small conference of about 30 attendees. You would not have known how small it was by the very active twitter backchannel – which Marie Ennis O’Connor has storified here: Day 1 Storify, Day 2 Storify.

    For Virtually Connecting, this conference represented our first experience outside of Educational Technology. Personally, I think the area of patient engagement is one that could benefit a lot from this type of short but powerful conversation. We did two hangouts, one at the beginning of the conference and another at the end.

    Wondering what ePatients are? Watch the first video and learn a bit about what the conference was all about. The discussion included mentions about the need for improved digital literacy skills, which is something I try to address in my ShouldIBlog.org free course (which was mentioned a few times during the conference).

    In the hangout, AnneMarie Cunningham mentions Liz O’riordan’s blog: Breast Surgeon with Breast Cancer.

    The pre-conference hangout stars:

    Onsite: Rebecca Hogue, AnneMarie Cunningham, and Steven Wilson
    Online: Autumm Caines, Kate Bowles, Marie Ennis O’Connor, and Terri Coutee

    In the post-conference hangout we talked about the idea of needing to make a change from Patient-centered care to Patient networked care – and idea that was brought up during the second keynote by Julie Kennedy. In the after show (after the onsite folks left) Stacey Tinianov highlights the gap in patient voices, specifically those who are not digitally connected.

    Watch the post conference hangout, starring:

    Online: Suzan Koseoglu, Marie Ennis O’Connor, Stacey Tinianov, Alene Nitzky, and Annette McKinnon
    Onsite:Rebecca Hogue, Cathy Ure, and AnneMarie Cunningham

    What this experience has taught us is that Virtually Connecting has value outside of Educational Technology conferences. It has also help to point out a need within the ePatient community to help foster connections between ePatients. It also has highlighted the desire to connect patients to clinicians (e.g. physicians, nurses, etc).

    I’m not sure yet what the next steps will be for Virtually Connecting within the ePatient space. I’m open to suggestions. Please leave a comment with your ideas.

  • A journalist asked me …

    This morning I was interviewed for an article to be released as part of breast cancer awareness month (aka pink’tober) in our local newspapers. One of the questions the journalist asked me was “10 years from now, what do you hope to have gained from this experience?”

    My immediate, and really only, thought was: Looking 10 years into the future, I hope that all my breast cancer friends (especially those who are metastatic) are still alive and well.

  • Shivering in a Paper Gown …

    I am very proud to have had a chapter that I wrote included in this anthology (“Breasts that aren’t Breast”). I’ll be attending the book launch on Thursday evening in downtown San Francisco – if you are local and want me to pick up a copy for you, let me know.

    About the Book: Shivering in a Paper Gown

    In a moving, honest and raw style, thirty young women tell their stories about the aftermath of living with breast cancer. Far from the trite and saccharine, the authors’ combination of dark humor, sass and solidarity throughout the challenges of a life-threatening disease shine through.

    The book’s authors have many stories to share—stitching broken and scarred bodies back together, reconstructing identities, denying and confronting and accepting death. The authors reveal the realities of life, through and with cancer, as they learn how to survive and in the process, how to live.

    The personal narrative stories beg the reader to step into the space that cancer has razed, to consider what is most beloved and cherished, and to ask what the sum of one’s life will be. This anthology is relevant to cancer survivors and those who have gone through trauma.While the authors’ common bond is cancer, the stories cover the topics of: body image, parenting, spirituality, social support, emotional renewal and end of life choices.

    For every book sold, a woman going through breast cancer will receive monthly support group services through the Bay Area Young Survivors (BAYS). BAYS is a support and action group for young women in the San Francisco Bay Area who are living with breast cancer and were diagnosed before the age of forty-five. The goal of BAYS is to break the isolation of living with breast cancer, by providing a community built on compassion, understanding, hope, and inspiration.

  • ePatients and Advocacy

    I define myself as an ePatient (engaged patient) – but mostly from the perspective of a patient who advocates for myself. Someone that seeks to understand my medical condition and ensure that I am getting the best care possible. I think of this as internal advocacy – or self-advocacy.

    Another aspect of ePatient is that of advocating for others who share your condition. I think of this as external advocacy. Often, this is something that is expected of ePatients if they want to access ePatients rates (or scholarships) to attend medical conferences. You are only considered an ePatient if you do some form of external advocacy.

    My blog also provides some level of external advocacy. It isn’t so much a direct form of supporting change, but rather, it tells a lived experience to help people better understand what it means to be living with breast cancer. That is a form of external advocacy, but it isn’t necessarily that active – it is more of a passive advocacy.

    In the breast cancer world, I don’t really see myself as an external advocate. I’m not trying to change the system in any way. Mostly, I provide support for any women who reaches out to me. I share my story, in order to help other people better understand breast cancer.

    Going through the process of diagnosis for celiac disease has made me want to advocate for change. I’m actually motivated to document my journey, but then to question the process. I want to make this process better. I want to change the way people are diagnosed, and the way people are treated. I want this disease to be better understood. Similar to breast cancer, it is an area where awareness got it all wrong. People are aware of the disease, they just don’t understand it. There are many parallels.

    I’ve previously blogged about the double-edged sword with the gluten free fad and celiac disease. Because of the gluten free fad, more people know about celiac disease. But, because of the gluten free fad more people misunderstand what celiac disease is. They mistake it for the fad diet. They think that people who ask for gluten free meals are doing so for personal preference reasons. They think that a little cheating now and then will do no harm.

    After a wonderful dinner the other night (ordered from the gluten free menu), I decided to order dessert. They didn’t have the gluten free chocolate cake that I wanted, so I opted for the sorbet. Unfortuantely, the sorbet came out with two chocolate wafer cakes embedded in it. I should have sent it back. Instead, I took them out, gave them to my friend, and ate the sorbet. Fortunately, I’m not yet that senstive to gluten. But still, there is a point to be made.

    Tonight, I decided to order humus and veggies to go – so I’d have something decent I could eat on the plane tomorrow. After a much longer wait then I expected, it came out in a nice to go bag. Fortunately, I looked inside and discovered that dried bread crackers were dipped into the humus. I have decided that my advocacy now includes sending food back when it is contaminated. You see, I was really clear with the waiter that I needed everything to be gluten free. This is a good restaurant. They know better (that was the case before too). And so, I sent it back. I explained why. After another wait, I got a second batch (it turned out that one of the challenges they were having was finding fresh veggies to include in the humus and veggies platter – they eat a lot of potatoes in Northern Ireland, not so many other veggies).

    So, I know have one way in which I will be an active advocate – and that is, if it says gluten free but it is not, then I shall send it back!

  • What not to say to a cancer survivor …

    When I hear these words, I remind myself that the person means well, but don’t know what to say. I thought I’d share a couple of them that happened to me over the last week.

    “If I had cancer, I would ….”  This usually degrades into some diatribe about how diet or some other complementary therapy might “cure” cancer. It is actually a very naive view. I actually had someone say to me “if I had cancer, I wouldn’t do chemotherapy” … the problem with that statement is in part that it is too generic. You see, there are different types of cancer. Not all cancers are treated with chemotherapy – hell, not all breast cancers are treated with chemotherapy. But even more than that, the reality is that if you have not had cancer you have no idea what you would do!

    I had always thought that if I had cancer I’d want to have it removed immediately. That turned out to be the last thing that I wanted. I delayed my surgery as long as I could. I needed that time to process. Until I had cancer, I had no idea how I would have responded.

    The other question I got was whether or not the expression “what doesn’t kill you makes your strong” resonated with me. It is an interesting question, but not one that you really should ask to a cancer survivor. For the most part, people would say NO. Cancer hasn’t killed me yet, but it certainly didn’t make me stronger. Cancer and its treatments have left me with a whole lot of collateral damage. There are things that I do now that I would never have thought to do before (like walking 32.5 miles in two days for the Avon Walk), but overall I would not say that I am “stronger” … I’m just “different” … and in many ways I feel “broken” … I’m struggling to figure out how to get healthy, how to not be broken, but I don’t know how or when that will happen. So for now, I’m striving for feeling well … not there yet either …

    So, next time you meet something with cancer, please do not ever contemplate starting a sentence with “If I had cancer, I would …” because the reality is, until you get cancer, you have no clue what you would do.

  • Changing my default setting

    By default, my assumption about food has been that I can eat it. I would rarely check the full list of ingredients – with a few minor exceptions. This is, perhaps, one of those “lifestyle” changes that needs to be made with a celiac diagnosis.

    Since I’ve been travelling in the UK this last week, I’ve learned to do the opposite. This became very clear during the lunches at both conferences. In both cases, the issue was that the meals were served buffet style. In both cases things were not labelled. Unfortunately, since gluten sneaks into a lot of things (e.g. an incredibly large variety of potato chips have gluten), the default assumption needs to be that the item includes gluten unless it is specifically labelled as gluten free.

    I’ve found that when travelling, I’m relying a lot more on processed foods. If it comes sealed in a package that says “gluten free” then I know I can trust it. For the most part, I can trust homemade meals. However, restaurants pose a challenge. If they are good restaurants, then they understand – and things are free from contamination. However, if they are not accustomed to dietary requirements then there is much more risk of exposure.

    My message to conference organizers is that if people are travelling from out of town to attend, and they declare a serious allergy, then you should make an effort to ensure they have food they can eat (and snacks). The first conference failed at lunch, but when I inquired about snacks someone went and got me something that I could eat (I’m eatin a lot of macaroons). The second conference didn’t do so well. Not only did I not get food for snacks, I also didn’t get lunch. There might have been something delivered that I could eat, but because nothing was labelled, I didn’t know. Everything was highly suspect (sandwiches were a definite no, soup could have noodles, thickener or barley, and chicken tenders might have wheat breadcrumbs or be fried in a frier that had traces of wheat in it).

    When travelling, and especially when travelling internationally, this poses an extra challenge. I am still learning about what food I can and cannot eat. Labelling differs by country, which also makes it challenging. I’m still learning how to make adaptations – and how to effectively pack my own lunch when I’m on the road. I cannot simply just grab something at the corner store. Often I cannot even just grab something at the grocery store. I need to figure all this out. It is less challenging when I’m at home.

    I am finding that I’m eating a lot more fruit. In part this is because whole fruit is something that often appears at the dessert table at buffets, and I can guarantee that it hasn’t been cross contaminated.

    In Manchester, I found some good organic yogurt at one of the corner stores. I found that yogurt and fruit was a good lunch. Interestingly, I would not have found that before. Before, I would not have found it to be filling, but now I do. It is very interesting to see how my taste buds and the way my body feels is changing.

    When I get home I’m going to have to explore yogurts. I’m going to have to see if I can find a brand that is organic, packs well, that I like, and that I can digest without the need for a lactose pill. I’m crossing my fingers that I can find this magic combination.

    I also need to discuss with the GI doc blood tests for various nutritional deficiencies. I already know that I’m anemic (a common celiac side effect). I just don’t know what other nutritional deficiencies I have – so I don’t know what things I need to look for in my diet or what things I should be thinking about supplementing.

    Another one of the “lifestyle” changes relates to how I cope with eating out – especially, I how I cope in social settings. It is one thing for me to research a restaurant and make a deliberate choice about where I get my dinner. It is a whole other thing when I’m visiting friends and we decide to go out to dinner, or when I’m staying with friends and we go out for a meal. It is a struggle to stay strong, and stick to my guns – to not cheat. Funny, but I am not tempted (at least not yet) to cheat on things that I used to like (e.g. chocolate fudge cake). I can usually convince myself that wheat is poison, so I can either forgo or choose differently. However, it is really hard to do this when I am part of a larger group (either in a professional setting or with a group of friends). I find myself thinking – It isn’t such a big deal, I could eat a little bit, a little won’t hurt me …

    For some people, even a little is bad. For me, I don’t know yet. I don’t know how sensitive I’ll be after I’ve been off gluten for a longer period of time. But I also know that the longer term effects of celiac disease are not well known. I do know that the longer term effects CAN be a lot worse than just a little stomach upset … they can be severe (e.g. non-hodgkin lymphoma, brain damage). It isn’t just a temporary stomach ache with some bloating. Those would be the acute symptoms that are well known – it is the longer term ones that are much more scary, and also what makes me want to never cheat.

    And so, the lifestyle change I need to make is that of changing my default setting. By default, I cannot eat a given food, especially a prepared meal. By default, I need to assume that it is poison for my body. So, if you are planning something, and someone with celiac is attending, please make an effort to label anything that is safe – because otherwise, we have to assume that it is not.

  • This makes me sad

    I learned from my friend today that Jac lost her life to breast cancer. I didn’t know Jac but I knew a little about her story. She was diagnosed after me. I remember when my friend told me that her friend was diagnosed. I offered to be a point of contact, but Jac didn’t reach out – that is OK, not everyone diagnosed needs or wants a distant person to talk to.

    I make it a point to engage with anyone that makes the effort to reach out to me, as so many distant and close people have been there for me.

    Learning of Jac’s recurrence and progression saddened me. That was only two weeks ago, so it was a bit of a shock when I returned to my hotel room this evening to learn of her death. It was too fast. It is hard to explain how the death of someone I never knew could shake me, but it does. She is the first person that I know, who was diagnosed after me, to die. She was 34 and a young mother (she found her lump while pregnant, it was dismissed as nothing to worry about), which makes this extra sad.

    I knew this day would come. I know that at some point several of my new friends are going to die – metastatic breast cancer (that is when breast cancer spreads to bones, liver, lungs, brain) kills. It makes me sad.

     

  • Food complexities

    Going gluten free just before travelling internationally was, perhaps, not one of my best decisions – but it was a prudent one.

    One complexity is that I don’t know all the tricks of the trade yet. I am not educated enough about reading labels to find the hidden gluten. Just occurred to me that you could make a good educational game, like a crossword or word search, where the words included are glutenous words that don’t necessarily sound like gluten.

    In some ways I’m looking for the gluten free diet to be my panacea. Originally, I had hoped that the CPAP machine would be. The CPAP machine has made a huge difference for me. I’m sleeping a lot better now. Although, I am finding I don’t necessarily “need” it now that I’m not on any hormone therapy. It highlights to me the role estrogen plays in my sleep. Unfortunately, when I get back to California, I’ll be going on ovarian suppression, so the estrogen levels will again tank, and the worst of the sleep apnea will likely return.

    There are a lot of overlap symptoms between cancer recovery and celiac disease. Fatigue is one of them – although I mostly recognize it for what it is, and exercise has been my best treatment to battle it. For the most part, I’m winning that battle.

    So back to the title, food complexities. One of the challenges is that I don’t know how to recognize when something is truly gluten free or not. I also don’t know how my body responds to being gluten free. I can tell some differences right away – so I think, based upon my bowel movements, that somehow in the last 24-hours I’ve been exposed to some form of gluten. That might have been something I ate on the plane or something I ate for lunch after arriving. I don’t know. I’m not familiar enough with my body yet to know what is causing what. I also am not in a position to be only eating things that I know are gluten free. I will be getting many of my meals provided in the next week – I’ve asked for gluten free, but I cannot guarantee it.

    When I think of eating gluten free, I think of some of the struggles my father has had. Part of it goes back to his childhood, when gluten free options were very limited. He came to see eating gluten free as a negative, almost as a form of punishment. He certainly saw it from the perspective of missing out rather than one of exploration. That being said, they didn’t have the same options we do now. There being a fad in gluten free, means that there are many more options.

    The comment that is often made is that it is a life style change. They are not kidding. It is not like any other simple dietary restriction – it is a huge pain. I am choosing to approach it from a bit of a different light. I am approaching it as gluten being poison in my body. That makes it a whole lot easier for me to say no, especially when the thing being dangled in front of me is something that I’d love (like a nice warm brownie).

    Part of me is still feeling a little bit of impostor syndrome. I don’t have a formal diagnosis. I have not yet seen the GI doctor. So, part of me feels like I’m “faking it”. I also didn’t have an immediate response to going off gluten – but it has only been a couple of weeks. I did have a couple of real responses. Changes in bowel movements, clearing up of blisters. I cannot say I’m feeling remarkably better just yet – but then again, I’m also feeling better now that my body has some estrogen in it – however temporary that may be.

    Reading the facebook celiac group, I’m struck by the need to get official opinions on what is happening. The issue is so very clouded with stories of children being diagnosed, or not being diagnosed, as well as those who are going gluten free with no diagnosis and those who test negative but are convinced they are false negatives. Not that their experiences are not valid, just that there are too many people in the group with too many different variants that the information is less useful. Arguably, I’m an impostor in that group, as I haven’t seen the GI specialist yet.

    I’ll be updating things here once I do see the GI doc. I’ll talk more about the diagnosis process once I have some formal experience with it. I’ll also be starting up a new section of my website with Gluten free recipes.

    I’ve choose to approach gluten free, in a similar to the way I approached breast cancer treatment, with a sense of adventure. I enjoy cooking and adapting recipes. I now have a reason to adapt recipes. I can adapt with purpose. So far, I’ve learned that the GF muffins and waffles I made (lemon cranberry) were both quite good hot, but pretty awful cold (so much for airplane snacks). It means that as long as I can throw them in the toaster oven, then they are a good quick snack … just not worth taking along with on a trip.

    One advantage to this diagnosis (if advantage is the right word, perhaps it is a better choice than gift), is that it has relieved a lot of my cancer stress. Unlike cancer, there is something that I can do about it. There is a clear path to treatment. Unlike cancer, were the treatment made me sick, with celiac disease the treatment actually makes me better.

    And so, I know have a non-cancer reason for most of my symptoms, and that makes me feel a whole lot better!

  • Celebrating successes

    One of the things I think is important is to not just talk about the tough parts of cancer and illness, but also to celebrate success – however small or large they are. Sometimes just having a good day is a success.

    The success I want to celebrate today is that I swam 1600m (40 laps in my 20m lap pool). The only other time I’ve swum that far was this time last year – as I was starting Paclitaxol chemo. The chemo regime slowly eroded away my energy and my ability to physically do things.

    I got back in the pool in April. I reported on April 29 that I could do a grand total of 6 laps! Getting back in the pool was difficult. Swimming was even more difficult. It provides a test of both my mobility and my strength. In order to do front crawl, one needs full range of motion. In order to breast stroke, one needs strong pectoral muscles (or at least not horribly weak ones!).

    And so, today I celebrate my success of swimming 1600m. My range of motion is excellent. I’m getting stronger every day – such that now I can do breast stroke for as long as need/want.

    So, today is a good day.

  • This makes me angry #celiac diagnosis

    I received this email from my primary care team:

    “Do please remain on a regular diet for now. Usually for a final diagnosis of celiac disease an endoscopy with biopsy is recommended.
    The biopsy relays on the fact that the gluten disease causes inflammation in the intestinal wall which can be detected with the biopsy. If the diet is gluten free already often times this inflammation resolves and the biopsy comes back negative thus not providing a final diagnosis.”

    This would all be fine and dandy if they got me in to see the GI specialist tomorrow and we planned to have the biopsy within a week. But that isn’t the case. To be fair, I don’t know yet when I will get an appointment through my primary care system. You see, I get my cancer care through a different system. In the cancer system (Stanford hospitals and clinics), where I went through the first two sets of screening (and was positive on both), can’t get me in until October 15. This is just the first consult. Who knows how long it will take to book the biopsy (actually, I should phone and ask that). I’ve also asked for an appointment through my primary care system (Palo Alto Medical Foundation or PAMF). If I can get in sooner, I will.

    The reason this makes me angry, is that everything is pointing to a positive result. I have a family history. I have had two positive tests. There has been no worry of a false negative, because everything has been positive! So, instead of getting me into and through the system quickly, I end up having to wait an indeterminate amount of time. But to rub salt into the wound, I’m expected to eat the food that is making me sick while I wait. This protocol makes me angry. It pisses me off. If gluten is like poison in my body, why on earth would I knowingly continue to poison myself until the healthcare system danes to give appointment so that I can be formally diagnosed? – at which time all they will do is to tell me to stop poisoning myself and after a year validate that I’m complying!

    The protocol could use a little less of the objectivist world view and remind itself that patients are human. This protocol is both archaic and example of how not to be patient centered. Perhaps, once patients have had positive blood tests, that clearly indicate that the next step is proceed to biopsy (there is a clear protocol here – http://www.mayomedicallaboratories.com/media/articles/algorithms/1242-celiac.pdf) , that they could prioritize getting said patients in for evaluation and biopsy quickly, while they are still sick, without asking them to intentionally make themselves sicker? I cannot even imagine how horrible this would be for parents of young children – knowing what is making their kids sick, but being told to keep feeding it to them for the sake of an official diagnosis.

    Now, according to the latest from the folks at the University of Chicago, I would only need to go back on a small amount of gluten for two weeks before an endoscopy biopsy (see http://www.cureceliacdisease.org/archives/faq/what-is-a-gluten-challenge). So if my next appointment isn’t for 6-weeks, and it could be another 2-3 or more months before the biopsy is scheduled, then why would I continue to eat gluten while waiting for doctors appointments? I have already had a positive blood test, so that doesn’t need to be repeated.

    And so, with that, I shall be non-compliant. That is, I’m going to go on a gluten free diet now. I’m going to stop poisoning myself now. I will give my body some time to heal while I wait for doctors appointments. I will cross my fingers that some of my aches and pains improve once the gluten has time to leave my system and my body has had a little time to heal itself. Once I actually see the doctor, we can then talk about next steps for a formal diagnosis.

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