BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Category: Navigating the new me

  • Exhausted … and still learning to navigate conferences …

    Yesterday I attended the Medicine X Ed conference up at Stanford. I had planned on attending all day today too, but by the time I got home last night I was exhausted. My body could not handle another full day (12 hours of conferencing when you include the drive time to and from site). Then I thought back on the last couple of days and realized why I was so tired.

    Monday I spent too long at doctors appointments. Mostly this was a screw up at the Infusion Treatment Center. I’m trying out Lupron (ovarian suppression) in small doses to see how my body reacts to it. This is the next stage of hormone therapy to help prevent the breast cancer from coming back. Because it was not a typical dose, the main campus pharmacy didn’t have it. Rather, they had some at the South Bay campus – and so, after wait more than 30 minutes, I hopped in the car and headed down to south bay. It turns out they were not exactly ready for me when I arrived, and I spent another 2 hours waiting for a needle that takes about 2 seconds to give.

    Tuesday started with an early morning physical therapy appointment for my back (note, they don’t do physio therapy, they do physical therapy – it is mostly targeted exercise and stretch). I went to South Bay as I had a derm appointment there first. In preparation for the derm appointment I’d eaten a little gluten on Sunday and Monday. I thought I had one blister which wasn’t in an idea location for biopsy. Sitting in the chair, talking with the derm, showing her my various rashes which had gotten much worse in the last two days, a light went on. The rashes were caused by the gluten – dermatitis herpetiformis. This was why I’d eaten the gluten in the first place. So, she did a biopsy of a couple of points on my stomach – 4mm skin samples, which are now stitched up. I need to return in two weeks to have the stitches removed. After the biopsy (which again, meant I was in the derm office for 90 minutes instead of 15), I went upstairs for my second Lupron injection. This wasn’t as long as the last time, but still not fast – 30+ minutes.

    So, the first two days of my week were spent mostly in health related appointments.

    Wednesday I was up early so that we (my friend Stacey and I) could drive up to Medicine X and arrive before everything started. I had my third Lupron shot just after lunch. This time I was in and out of the ITA in less than 10 minutes.

    The conference yesterday was great, but it was also exhausting. There was a bit of a mix up at lunch, which was already planned to be late in the day. I didn’t bring enough snacks. There were no gluten free snacks other than a little bit of fruit, which was snatched up quickly and not refreshed for later breaks. The conference organizers were very responsive to the oversight with catering, but still, it caused an extra challenge to the day.

    And so, I had to make the call to skip out on the morning sessions of the conference. There was one session I really wanted to attend, so I’ll try to catch up with the organizers of that session at lunch (thank-you Twitter for giving me a way to reach out to the presenters). I’m suffering a little from FOMO (fear of missing out), but the reality is, I need to take care of myself. I don’t have the stamina that I used to have. I cannot figure out whether the fatigue is caused by the gluten, the lupron, low blood sugar from not eating right, or just plain doing too much).

    The good news is that I seem to be tolerating the Lupron well, which means I can move onto the next step for hormone therapy – which sucks, but for me, it doesn’t yet suck as badly as the tamoxifen.

     

  • 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!

  • 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.

  • Quality of life issues

    In many support group meetings, I have heard women say that they stopped taking tamoxifen for “quality of life issues”. They never explain what those issues are. I didn’t really understand what side effects would be bad enough to warrant that I stop taking a medication – especially a medication that is intended to significantly reduce the likelihood of a cancer recurrence.

    As I have mentioned in a previous post, that I had been struggling with headaches. The headaches were so bad that I was convinced I had a brain tumor. I went so far as to ask for a brain MRI – which thankfully turned out to be clear. It was at this follow up appointment that my oncologist suggested I take a break from tamoxifen. At the suggestion I immediately broke down in tears. I was afraid of not having that protection – tamoxifen reduces the chance of recurrence by 30%. The idea of going off of it was scary.

    I started taking it back on my birthday in early February. Part of the reason for starting on my birthday was so that I would know exactly how long I had been taking the drug. However, I probably started it earlier than I should have. At the time I was still recovering from my major surgery on Dec 17th. I still had severe joint pain as a result of taking too much Cipro. It was almost impossible to tell what side effects where caused by tamoxifen and what was part of the normal healing process.

    So, on the advice of my oncologist, I decided to take a tamoxifen holiday. I stopped taking the medication the same day I flew to Niagara to visit my parents and attend the SMSociety conference. Within two days I noticed a fog lifting from my brain. Two weeks later I was stronger – riding my bike for 30 miles and feeling good about it. My back pain was easing. I was generally feeling a whole lot better.

    After last weeks oncologist appointment, we decided to try to go back on tamoxifen. Rather than taking a 20mg dose in the morning, we would try splitting the dose to to 10mg twice per day. The first morning I took a 10mg dose and within hours my headache returned – in force. I could not think. I constantly felt like I was having a blood sugar low, except eating didn’t help. Again, checking in with my oncologist, we decided to try just 10mg at night. Unfortunately that didn’t go so well either. I was still getting headaches, but it also made my bones ache. I realized then that the chemo recall and neuropathy issues  I was feeling post surgery was actually a tamoxifen side effect.

    There are some side effects that I can live with. I’ve learned to deal with vaginal dryness (thanks to some great advice from my gynecologist). In some ways, I can mostly deal with the joint pain. I can deal with the fatigue. Joint pain and fatigue both respond well to exercise – that is, exercise reduces the impact of those side effects. What I could not deal with was the headaches. Too much of what I do requires me to be able to think straight, and the headaches were preventing me from thinking. I also found that when I went back on the tamoxifen – even the 10mg dose at night – I found exercise difficult. It seem to be sapping away at my energy. I lacked strength. So, I was both weak and unable to think. This is when I really reflected on what ‘quality of life’ means. I realized that I could not live like this. The current protocol calls for 10 years of tamoxifen with a 20mg dosage. There was no way I could do that.

    And so, with the advice of my oncologist, I am no longer taking tamoxifen. I will now add myself to the list of women who stop taking it for quality of life reasons.

    Fortunately, my oncologist is very understanding. He totally understood that I could not manage with the side effects. The line between tolerable side effects and untenable side effects had been crossed. So now we move on to the next option for hormone therapy. In some countries, the therapy that I’ll be trying next is actually the therapy that is given first. Studies of shown that it is actually more effective than tamoxifen – but in some women the side effects are much worse. We have decided on an approach that eases me onto the new medications to see how I react. The first phase is to try a low dose (24-hour) of Lupron (it suppresses ovarian function). If I tollerate the low dose/short acting Lupron, we’ll then move on the injection that lasts one month. If that works, then we’ll add an aromatase inhibitor.

    To be honest, I don’t really understand how tamoxifen nor how aromatase inhibitors actually work. Part of me thinks I should learn this, but another part of me doesn’t want to bother. I’m happy to leave all that biochemistry and biology up to my doctors and trust that they know what they are talking about. From my perspective, all that matters is whether or not I can live with the side effects. If I can find something that doesn’t totally suck, such that I can live with it, then I will.

    On the positive front, I’m no longer taking tamoxifen, and the experiments with Lupron will be delayed until I return from the UK. This means that I’ll be able to think while I’m visiting friends and presenting at conferences. I am so much more excited about the trip now then I was when I was contemplating travel with headaches and bone pain. I’m going to enjoy these next few weeks as much as I can!

  • Like a phoenix – on re-emergence and identity

    I have commented previously on how I use different names in different contexts. Rebecca is my formal and professional name. I use Becky with close friends and within the breast cancer community. When attending conferences, I’ve been able to use the name as a signal. People that know me well or read my breast cancer blog will call me Becky, others will call me Rebecca (which is what is on my nametag). Note that although friends in the breast cancer community call me Becky, my healthcare team call me Rebecca – this is in part a safety issue, which I blog about here.

    In September, I’ll be attending the QUB ePatients Conference – The medical, ethical and legal repercussions of blogging and micro-blogging experiences of illness and disease, Queen’s University Belfast. The conference has a very narrow focus, however, that focus aligns nicely with the new path my research is taking.

    At the conference, I’ll be reporting on a survey that I did that looks very peripherally into the impact breast cancer blogs have on those who read them. I’ll be presenting the information as an auto-ethnographic narrative, in part because when it comes to breast cancer blogging I cannot be objective. The commentary from the surveys illucidate different stories (narratives) within my own lived experience. So my presentation will be in part my story, and in part a report on survey results. This is a whole different type of conference presentation, and I’m excited to be able to give it.

    This presentation will challenge my identities. They will clash at this conference. I will attend as Rebecca J. Hogue unaffiliated scholar. I will present as Rebecca J. Hogue, but I will be presenting about my lived experience as BC Becky (stands for Breast Cancer Becky). I have not yet figured out how to be both Rebecca and Becky within the same space. I don’t know who that person is yet.

    I had an interesting conversation the other day with a fellow survivor about profile pictures. About how the picture that was used before cancer isn’t a picture of the same person. This is very obvious when you consider hair. Looking at old pictures is a reminder of who I used to be. The hair is a signal that is triggered by old profile pictures. The new has not yet emerged. I’m only part way there. My hair is still stupid short because the first growth after chemo (chemo hair) is not normal hair. I don’t have a new professional profile pictures yet. I don’t know what I want that picture to be yet. I don’t know who the Rebecca J. Hogue + BC Becky person is yet. I’m still a pheonix, emerging from the fire anew. I’m ready to start the re-emergence process, but I’m not at the end of that path yet.

  • Travel stress

    I used to love traveling. I loved flying to new places, experiencing new cultures, eating new foods. Now travel is stressing me out. I find that I need to plan a lot of the details, and not leave things to chance. I cannot travel as light as I would like, and yet, I cannot carry that much either. I find myself wanting to be that healthy easy going traveller that I used to be. But I’m not. Travel is now complicated.

    I now find myself wanting to spend more time at home. Wanting to be in some form of normal routine.

    I have a trip planned in two weeks. I’m headed to the UK for a couple of conferences. I’m looking forward to the trip, to visiting various people, to the various experiences of it. But I’m also stressed out about it. When I stress, I try to plan things to reduce the stress, but that takes away the spontaneity of the trip. With each thing that is planned, there is a reduction in the chance encounters that enrich the experience.

    And so, perhaps, I need to let go of traveling on my own for a bit. I need to get stronger. I need to get my mind back. I need to feel like I can do this on my own, that I can let go of the need to plan everything and go with the flow – whatever that flow needs to be.

    But it sucks that it is all so complicated now!

  • Belly dancing and next steps with exercise

    This week I officially graduated from the Living Strong Living Well program (LSLW) – sponsored by Stanford University and the local YMCA (nothing to do with Lance Armstrong). I must say that the program has been a lifeline for me. It got me to the gym and strength training shortly after my lowest time. I did my first class on my birthday back in early February. Looking back at the data from the Fitlinx tracking system, I see that I was leg pressing 60 pounds back in February. I’m now pressing 150 pounds. If I had had to pay for the program I likely would not have gone, and for that reason alone I’m going to donate some money to support the program. It made a huge difference for me, and I want to pass along that difference to others.

    The LSLW program has helped me regain a lot of my strength, but towards the end I was ready for it to be over. In general, I hate exercising indoors. Going to the gym has been a means-to-an-end for me. I went to the gym to get stronger, so that I could do the things I want to do – like hiking and biking. At some point, however, the focus needs to change from getting stronger at the gym to doing more of the actual things I like doing. I am reminded about bike touring advice, and how no amount of training can replace time in the seat.

    And with that, my focus needs to change. I’m debating whether or not to continue my membership at the Y. I had originally planned on continuing, but I wonder how much I will actually use it? How much will I wish I was spending more time on the bike rather than in the gym?

    One thing the Y has that I wanted to try out is a belly dance class. I used to do belly dance, and I have always loved doing it – but that was before neuropathy and surgery. Last night I gave it a try. It was a little bit crazy, but also great to do. I definitely felt like I was working on some muscle groups that have not yet been worked on! I also felt a sense of familiarity with some movements and frustrations with others. I do think that it is something that I’d like to continue doing – mostly because it gets me stretching and strengthening in ways that is exceptionally good for my back and core. I need that. I am thankful that LSLW has helped me get back enough strength that I could successfully navigate the belly dance class.

    I have also been looking at the variety of free programs available to cancer survivors. I’m planning on attending a weekly strength and stretch class, in part because I know the instructor is awesome, but also because I feel like it is exactly what I need. I’ve thought about yoga, but I’m not strong enough to hold many poses for any length of time. Again I think of means-to-an-end. Is Yoga something I want to do because I enjoy it or because I feel like it is something that I need to do to feel stronger? Unfortunately, I think it fall more into the latter than the former. Belly dance, on the hand is something that I really enjoy doing.

    At this point I don’t know what my future exercise plans will be. Since my fall is looking crazy busy, I shall have to wait-and-see, but I definitely plan on staying active. I’ve gotten back in the pool and am swimming again – and starting to enjoy it too.

    To the fellow survivors who are reading this blog, what do you do to stay healthy/strong post treatment?

  • What’s a non-cancer reason for this?

    My new mantra is What is a non-cancer reason for this? I am actively trying to reprogram my lizard brain. Whenever I have a new symptom, or something doesn’t go as expected, I worry. I start to go down that path of OMG this is disease progression. But in order to stay sane, I’m trying to actively reprogram my brain. When it starts to go down that thought path of OMG this is disease progression, I actively ask the alternative question What is a non-cancer reason for this symptom?  I try to refocus my mind on the non-cancer reasons for the symptom. In many cases, this actually works … but not always. Sometimes I just go down that path and get myself all worked up about it …

    This week was one of those times. Sunday night I had a bit of fever. I woke up Monday morning to what felt like your garden variety bladder infection. I called and made an appointment with my primary care doctor (actually I saw someone else because she was out). I did the standard pee in a cup, and was diagnosed with a UTI (Urinary Tracked Infection). I was given antibiotics and sent on my way. No big deal.

    24-hours later, I get an email with test results. The doctor sense a cryptic message about how the results do not indicate a garden variety UTI, but to keep taking the antibiotics while we wait for the next round of tests to come back. The cultures will take another 24-hours or so. The message is vague enough that I start to worry. I foolishly look at Dr. Google. What does this mean? Any number of really bad things. I find myself searching for the answer to What is a non-cancer reason for this symptom? But I nothing pops up. Everything that I see looks really bad. I stop looking. I try not to worry, but part of me starts going down that path … OMG I have liver mets! (no I don’t, but that is what I was telling myself).

    I’m happy to report that it is nothing – well not nothing – it is ecoli – but that is really nothing. It is NOT CANCER … I had a perfectly treatable non-cancer reason for that symptom.  And so, one thing my doctors could have done to help me was to provide me with non-cancer reasons for this system. Next time, I’ll try to be more explicit in my inquires. I’ll ask directly them directly – what might be a non-cancer reason for this? So that I can focus on that. Because really, before cancer I never would have thought that every symptom I have would be cancer, so why should I focus on that now?

     

  • Fundraising time – Peak Hike for Prevention

    Please help me reach my goal of $1000 for this years Peak Hike by donating at: Becky’s Hike.
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    The Peak Hike for Prevention has a special place in my heart. It represents a special transition in my well being. I am excited that I’ll be participating in this years’ Peak Hike, as it is the 20th anniversary of the event. The team that I am on, Em the Gem, has been hiking since the beginning.

    Photo & Video Sharing by SmugMug

    What makes the Peak Hike so special for me? Two things – it was the last long walk I did before the cumulative effects of chemo prevented me from doing much exercise, and it was where I met Kaki and the Honer Team. Kaki is now someone I’m happy to call a friend. She coordinated a ride to/from chemotherapy when I needed one. She came out and walked with me during my recovery from my big surgery. She also coordinated meals for us, provided so kindly by various members of the Honer Team. I’m looking forward to seeing many of the Honer Family again and saying thank-you in person.

    For the first hike, Kaki had some t-shirts made. She is modeling the original shirt here:
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    Emily, Kaki’s sister, passed away not long before the first Peak Hike. The shirts were supposed to say “In Honor of Em the Gem”, but something when wrong in production. Ever since then, the team “Em the Gem” have been known as the “Honer Family”. I’m proud to be included as one of the members of the Honer Family. Here is a picture of last year’s Honer Family tree (I’ll have to get a better photo this year!):

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    If you want to join us for this year’s hike, we’d love to have more members on our team. Our goal is to have 50 people signed up. The event itself is a fun hike with a great lunch provided by Whole Foods. Afterwards, our team tailgates for a bit.

    Please help me reach my goal of $1000 for this years Peak Hike by donating at: Becky’s Hike.

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