BC Becky

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

Category: Emotional Journey

  • October – it’s just another month

    Last year, I found myself reflecting on all the pinkness of October. I recall thinking that October will always mean something different for me. I blogged about how I wanted to kill all the tacky fundraisers and really talk about what it means to experience breast cancer – it isn’t about pink ribbons.

    This year, my Pinktober experience has been different. I haven’t seen so many outwardly offensive advertising campaigns. No pink drill bits. No show your boobies for breast cancer advertisements – which is by the one, of the most offensive things one can do for breast cancer survivors, many of whom are suffering from severe issues with body image.

    This year, my Pintober actually began in September. First with my presentation at the Queens University of Belfast ePatient blogging and microblogging conference (#qubept). There, I gave a presentation on the impact breast cancer blogs have on those who read them. In that presentation, I weaved in my personal story with the data I got from the survey. I really enjoyed writing in that mixed paradigm – as both a cancer survivor and as an academic. You can read my presentation here or see the recording here.

    A couple of days after returning from Northern Ireland, one of the support groups that I’m a part of launched their new book “Shivering in a Paper Gown: Breast Cancer and its Aftermath: An Anthology”. One of the stories in the book (page 20) is based off of a couple of blog posts I wrote, titled “Breast that are not Breasts“. I read the story to a very packed room at the book launch.

    With that, Pinktober began and for the most part I ignored it. A friend asked me to write a blog post about what advice I would give for anyone going through cancer now – along the lines of a lesson I learned that I wish I knew before treatment. She wrote a lovely post that integrated the thoughts from six women – although I’d personally change the title to add the work survivors at the end, as the lessons are not from “breast cancer” but rather from breast cancer survivors: Six Lessons Learned From Breast Cancer. It felt more like what I was seeing this year in Pinktober – more useful resources and less tacky marketing.

    Another friend lunched an important project for research on metastatic breast cancer. If you have mets, I highly recommend you take a look at the Metastatic Breast Cancer project (https://www.mbcproject.org/). There is also a Facebook group for those who wish to follow using that media.

    The other aspect of October that I am much more aware of this year is BRA day (yesterday). More specifically Breast Cancer Reconstruction Awareness Day. The shorthand BRAday makes me think of all things tacky about breast cancer; however, I think the movement itself is an important one. I had someone reach out to me about I post I wrote last year where I struggled with the vanity of breast reconstruction. Early in my breast cancer treatment I was completely incensed about how I was informed about breast reconstruction. Perhaps it was because it was a male surgeon who said it? Perhaps it was because he just got finished telling me I had cancer, and needed a double-mastectomy, but the “good news” was the insurance had to pay for reconstruction. It wasn’t the message I was ready to hear – but for many women it is a message that needs to be heard, because they are not getting it. They don’t know that the option is available to them.

    For me, my breast reconstruction decision is every present when I swim (which is frequently). Every time I put on my bathing suit and walk out to the pool, I’m highly aware of how my reconstruction decision means that I don’t need to worry about prosthetics or how I look in the pool.

    I’ve joined a swanky gym (something I can only afford because of the deal I get from the wonderful folks at Sunflower Wellness). It is more of a country club then a gym. They do, however, have good cardio machines and a great adult swimming pool. Actually, they have two 25 meter pools, the one that is adult only is a couple degrees cooler and almost always available for lane swimming – plus it is a clean salt-water pool – truly wonderful! After my swim yesterday, I notice there were a lot of people tanning or just hanging out in the lounge chairs around the pool. I felt like all eyes were on me as I walked to the change room. Feeling like I didn’t ‘belong’ in this swanky club. But, the pool is great and open all winter (my condo pool closes at the end of the month). I’m going to continue going to the gym, but will probably try to get there a little earlier in the day when the pool is area is less crowded (the pool itself wasn’t that busy).

    The women’s locker room is a bit of a challenge for me. Many of the women walk around naked. I am very self-aware about my scars. I opt to be as discrete as possible when I’m changing into my swim suit or getting dressed after my shower. I don’t think that I would have had the inner strength to manage this had I not had reconstruction. Now I find myself wondering if the women in the club think that I did it strictly for vanity reasons?

    I also find myself contemplating nipple tattoos. A few months ago I bought some rub-on tattoos but haven’t had the courage to try them. Now I find myself wondering if putting them on would give me more confidence at the gym? My friend Stacey talks about how the rub-on tattoos help with inner confidence. In some ways, it is part of the healing process, and part of the reclaiming process. We are reclaiming our female bodies after cancer has taken parts away. I may seem vane or trivial, but it is not. It is a small thing that we CAN do. As a ‘young’ person being thrust into menopause, having all the estrogen in my body blocked in order to prevent breast cancer recurrence, I cling to the aspects of femininity that I can control. I try to fight the side effects by exercising, and strengthening. I need the self confidence that allows me to workout at the gym, and swim in the pool, and change in the women’s locker room.

    So this year, October is just a month, like any other month. It is one where I am working on both inner strength and outer strength. I am working on healing.

     

  • Decide who you trust

    A friend (Marie Ennis O’Connor) has asked me to blog about something that I’ve learned through my experiences with breast cancer. I went back through my blogs, looking for this story, and realized that I did not tell it. Perhaps it is because it is a learning through reflection, rather than an in-the-moment type story.  An aside – perhaps it is this type of after the fact reflection that makes books about illness different from blogs about illness?

    When I think back about one thing that I’ve learned, it is that treatments change over time but advice is full of ‘old wives tales’ which are often based upon older treatments. This was never more poignant than during my last round of AC chemotherapy. Throughout AC chemo, I had been suffering from nausea. I new from support group that people who tolerated it well only had nausea for three to five days. I had nausea for at least eight days. Given I was on a 13-day cycle, this meant more days with nausea then without. Now, my nausea was never really bad. When I complained to my oncologist, he asked me “when was the last time you threw up?”. Never. My nausea was never that bad, it just lingered.

    The folks at support group (especially those a year or so ahead of me) would talk about different nausea meds. The meds I was on were not the meds that everyone was talking about. I found myself wondering if I should be on different meds? In my mind, a change of meds would mean less nausea. I would tolerate the chemotherapy side effects so much better.

    What I didn’t realize was that these different nausea meds were the old school meds. The meds my oncologist had me on were the new ones. People in support groups, and some of the older chemo nurses, were not familiar with the new meds. The recommendations I was getting about ‘what works’ were ‘old wives tales’, and I bought into them instead of trusting my oncologist.

    For my last bout of AC chemo, I tried a different combination of anti-nausea meds. My oncologist was away, so his nurse practitioner changed my meds (in part because I asked for it). I’m sure that if my oncologist was there, he would have explained that I was on the new meds, but also that they were doing their job. I didn’t know the other option was the older option. I didn’t realize that the folk lore about the effectiveness was in part just because it was the older meds. The new meds had not been around long enough to be part of the lore. With the change my nausea was no better, but the side effects of the meds were much worse. I ended up with terrible mouth sores (so bad I needed liquid morphine to manage the pain). One of my biggest regrets regarding my treatment was that I changed anti-nausea meds for the last cycle of AC chemo.  I had forgotten my own advice. I had forgotten who I had decided to trust (my oncologist), and let the ‘lore’ effect my treatment.

    This tale is meant to be a cautionary one. Not so much about seeking advice, but about remembering that people who have followed this path before you did so at a different time. The treatment options (and side effect management options) available to you today may not be the same ones that were available for someone else a year ago. Although older treatments may work, chances are the newer ones are better. Before changing treatment plans based upon what you are hearing on the net or in support groups, ask yourself ‘is this a old tale’? And finally, decide who you are going to trust, and trust them.

  • If this then that

    However cancer maybe anticipated in fantasy, the reality is different.

    Somehow the stories we have in place never fit the reality, and sometimes this disjunction can be worse than having no story at all. ~ Arthur W. Frank (2013, p.54-55).

    While walking today I was reminded of the advice I give people. I have ranted about things not to say to cancer survivors. On the top of that list is “If I had cancer, I would …”

    And yet, I found myself going down that path. I found myself thinking … if this turns into that, then I would …

    And then, I saw the logical flaw in my reasoning. The reality is, if something did happen, I would have no clue how I would react. I would have no idea what would change or not change. Worrying about the what if is just a waste of energy.

    So, what caused today’s what if? Actually it all started yesterday morning. Stacey (@coffeemommy) and I were up at UCSF to give some of our blood for research. When it came to be my turn, I put both hands on the table and notices that my left hand was visibly swollen. Fortunately, Stacey was quick thinking and suggested I remove my wedding ring before the swelling got any worse.

    After donating two small vials of my blood (we used the right arm), I made a quick phone call to my surgeons office. I was in to see her assistant later that day.

    2015-10-02 13.43.20

     

    We are not sure what it is yet, but the biggest suspect is early stage lymphedema. This is can happen as a side effect of breast cancer surgery – specially because they remove a few lymph nodes to ensure the cancer hasn’t spread (or if it has, they remove any cancerous lymph nodes). I have only had a couple removed, so I was at very low risk for lymphedema. It won’t get diagnosed for certain until next week. I have an urgent referral for the lymphedema clinic at Stanford, so hopefully I’ll get in to see someone on Monday or Tuesday.

    Now, the what if, I would … if I need to wear a lymphedema sleeve I’m going to try and get a paisley patterns one so it looks like I have a full arm tattoo!

  • “we are all patients” … NOT #medx

    One of the comments that was made, and repeated several times on the first day of the Medicine X Ed conference I attended last week was “we are all patients”.

    This caused me to tweet out:

    I had not really thought about the problem with this rhetoric before, but when I heard the statement I felt it. The emotional me recoiled at the statement. I felt that my experiences as someone who has undergone diagnosis and treatment for breast cancer, and someone who is figuring out how to navigate hormone therapy and celiac disease, who has spent the better part of the last year and half attending to two or more healthcare related appointments each week, was discounted as “normal”. My experience was in no way unique or special. Saying that “we are all patients” is saying that the patient experience is something that is normal.

    Carolyn Thomas of @heartsisters explains it well in her post: “We are all patients.” No you’re not.

    What really struck me though, was that my response to the statement was an emotional one. It wasn’t rational Becky disagreeing with the statement. It was emotional Becky feeling like my experience as a patient had been silenced and discounted. That my story was no longer an important story to be told. I was no longer an epatient ‘expert’.

    Of course, academic me knows better. Academic me heard it and saw a parallel to the ‘all lives matter’ argument that is sometimes used to silence the #blacklivesmatter movement. If you are not familiar with what is wrong with the ‘All lives matter’ argument, please read this great article by David Bedrick – What’s the Matter with ‘All Lives Matter’.  It is, perhaps, because I had read that article that I saw the parallel in what was happening at Medicine X Ed.

    I’m kind of sad that my tweet didn’t get more favorites or retweets. I think it is important that we stop saying ‘we are all patients’ at medical conferences and within medical education. Unless you’ve experience critical/chronic illness, you cannot even begin to imagine what it means to be a patient.

  • 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.

     

  • 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.

  • 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.

  • 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.

     

  • 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.

css.php