BC Becky

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

Category: Pre-chemo

  • And so it begins

    The slow start to yesterday meant that I didn’t get my second blog post written. I shall try and get caught up today (before I completely forget what I was going to write about), but no guarantees.

    So yesterday we received some mixed news about the pathology. Specifically, the cancer in both breasts is IDC (invasive ductal carcinoma). Both are also ER-positive and PR-positive. We don’t know yet about HER2 as that test takes longer. This is a good thing, as it means there are more drug options for treatment.

    Left Breast (this is the scary one):
    grade 3
    Ki-67 count is 38% (this says it is still growing quickly)

    Right Breast (the nurse used the term ‘well behaved’)
    grade 2
    Ki-67 8%

    If you want to better understand pathology, there is a great resource: http://www.breastcancer.org/symptoms/diagnosis/path_checklist

    Today we find out what all this means. We are meeting with both the surgeon and medical oncologist from Palo Alto Medical Foundation (PAMF). Tomorrow we get a second opinion at the Stanford Cancer Center.

    I’m torn between the two environments. In part it will depend on what the treatment options are an who is more suited to doing them. PAMF has provided excellent service so far. It is easy for me to get in to see people and I have access to my care providers via email (mostly – apparently the system will not let them email malignancy pathology so I’ll get a printed copy of my reports at some point today). The nurse navigator phoned me yesterday and was awesome. She was able to follow up with the surgeon, collect all the info I needed, and call me back. That saved me an immense amount of time trying to track down the surgeon. I can see that being a very useful thing. In some ways, the decision will depend on the treatment options – and whether I will have the options I need at PAMF. I’m not actually interested in some of the stuff they do at Stanford – like nipple sparing surgeries and things that are done to help with cosmetic reconstruction. Honestly, I cannot see putting myself through the unnecessary surgeries to save skin that might be diseased. I’ll try to talk more about my outlook on that latter.

    Need to get moving this morning. Feeling much better than yesterday. The ER and HR positive news was good news, but also I got some great anti-anxiety meds from my family doc that meant I got a good night’s sleep.

  • A tough day

    I didn’t sleep well last night, and I know that sleep directly affects how I feel the next day. Reality is starting to settle in, but also fear. With every pain in my body I’m wondering if it is spread. Does the blister on my hand mean anything? How about that pain in my breast? The pain (it isn’t really a pain, more an awareness of feeling) in the breast is especially concerning. I find myself wondering if it is reaching the chest wall? But the logical part of my brain is saying, it could just be the biopsy healing – after all they did stick rather large needles in to extract core samples.

    One lesson I have is to not tell anyone new at the end of the night. Telling people is hard – there are reactions and conversations that accompany the news. Doing so just before bed is apt to disrupt my sleep – but the late day news of the second biopsy is just as much to blame I’m sure. Mostly I’m pointing people to my blog, just so I don’t have to keep saying it. There is an emotional toll that occurs on both sides. Some people want to reach out and talk, but I’m not there yet. I cannot talk about it. I think that when I have a treatment plan, and enough information to actually have something to talk about, then I might be able to talk about it.

    One of the thoughts on my mind is my outlook, and how much planning for the future do I do? I cannot schedule anything without a treatment plan, and I have no clue how sick I will be. I find myself thinking, “I need to do this before I get sick”, as my mind is telling me that the treatment is what will make me sick rather than the disease that I have now. When I talk about the future, I’m thinking about how much do I set things up so that I can pick up where I left it, or that it keeps going while I’m away, versus how much do I just let things go.

    I’ve submitted the paperwork to put my studies on hold starting September for a year. My project wasn’t progressing at all as planned, and a year away will make it unrecoverable. I’m not actually sad about that. I’m looking at what things I can do in the next few months to make the most of the data I already have – favouring the creation of journal articles for publication over any thoughts of constructing a dissertation. I’m more excited about the opportunity to start again with a new project (perhaps an autoethnography based upon this blog – looking at the role blogs and social media play in the mental health of cancer patients and their families). I was filling in something yesterday that had my credentials. I’m a PhD Candidate, which is written as PhD(c). I guess that is the credential that will remain after my name for at least the next couple of years. I remind myself that getting this far has been a huge accomplishment, and is worth celebrating.

     

  • The role of fate in my life

    Although I don’t believe in a god per se, I do believe in some form of fate. Throughout our bicycle journey (http://goingeast.ca/blog) we often felt that something was looking out for us. When I started my PhD, I reflected on fate here.

    I think that fate played a role in helping me be prepared for the challenges that lie ahead. Fate directed me towards the PhD program, where I ended up working with the Department of Family Medicine (DFM). Without this, I never would have found myself working in medical education. The last three years working with DFM has meant that I have developed a much deeper understanding for how medical education works, how some aspects of medical research work (e.g. I know what implementation research is), and how medicine is practiced in an academic setting (even the difference between a community and academic setting). These all have proven to be very valuable, as I learn to navigate the American health care system. I also now have friends who are physicians, and they have been a great support.

    The PhD program also helped me discover myself as a blogger. It helped me create a wide reaching social network (really several networks) – which I am very grateful for. When I first heard that I had cancer, I had people that I could reach out to – friends who put me in touch with other friends – all helping to form a network of support. It is at these times of crisis that we discover the true power of being part of networked communities.

    Thank-you everyone for your supporting words. When we were on our bike trip, we learned to ask for what we needed – it was not an easy thing, as it isn’t normal in our culture. I wrote about hospitality and permitting others to help us on our journey. To that end, a small help that you could provide on my journey would be to send a postcard, at some point over the next year (not all at once please) – something random at some random time. A postcard with a smily face, a poem, or a joke. Getting a small thing in the mail will put a smile on my face. I’m not sure I want to post our address here – so email/facetime/twitter me and I’ll provide it. Thanks.

  • A typo and an update

    Sorry, I clearly need to do a better job proof reading … I don’t have enough information yet to be talking about stages. Stage is a measure of the progression of the disease, and more needs to be known. I’m guessing stage 2 based on the size of the tumor on the left breast, but that hasn’t been confirmed yet.

    I did have confirmation that I have cancer in both breasts – so both breasts are grade 3 invasive ductal carcinoma (IDC) – which I shall now refer to as IDC cause the other is too hard to type.

    I am awaiting (numb to feelings at the moment) the results on the receptors. I’m hoping for a positive on something at this point, as the receptors tell the oncologists which types of chemotherapy work.

  • Impostor syndrome (no longer)

    This morning it occurred to me that what I was feeling was what we call in PhD land, impostor syndrome. This hits most often when you first begin your PhD – the idea that you do not belong, you are a faker in this community. I have struggled with it at various times throughout my PhD.

    I was feeling that way this morning. Without a confirmed pathology, I felt like a faker. I felt like I wasn’t really someone with breast cancer. What would happen if it turned out I didn’t have cancer? (frankly, the large lump in my breast was pretty convincing) What if it is just a minor cancer, then am I overreacting? Am I an impostor?

    I went out for a bike ride, and I was thinking about this post. The idea of it occurred to me just before I went out.

    I got home and hopped in the shower. My phone must have rung while I was in the shower. I had a phone call from the surgeon. The initial pathology is back – it confirms cancer. There isn’t much known yet – only that it is a grade 3 invasive ductal carcinoma (IDC). I am glad that I get results quickly – as soon as they are available – as that allows me to process the new information in small chunks as it arrives. Each new chunk of information allows me to reflect on it to digest it before the next chunk comes in …

  • The speed of things

    Everything is either too fast or too slow. I feel like the cancer is growing too fast. With each new ache in my body I am worried about it spreading. Is this another symptom? Has it reached my lymph nodes? I am constantly wondering, should I be worried about this or that?

    And at the same time, things are too slow. I cannot even book appointments without the pathology report. They need the definitive pathology – confirmation – before they will schedule something. The good news is, they will guarantee that they will fit me in when the pathology comes back. So, logically it makes sense. They cannot recommend anything until they have all the information, but at the same time, I want an appointment time so that I know that I will not be unnecessarily waiting.

    In the waiting, there is also the feeling of over-reacting. Am I making more of this than I should? What if it is just a ‘minor’ cancer? One in eight women will get breast cancer in their lifetime, so it is really that big of a deal? But, I am young and that is a concern. A new friend pointed out to me this article Why Everyone Seems to have Cancer, which she found to somehow be comforting. Cancer is a ‘normal’ part of aging, it argues. Unfortunately, this doesn’t help me at all. In some ways, it scares me, cause I’m too young. Two-thirds of women with breast cancer are over 50. I’m not.

    The too young thing is not new for me. In June last year (hmm, June seems like a bad month for me) I started developing cataracts. By October, my vision could no longer be corrected with glasses. In January I had my first cataract surgery – three days before my 43rd birthday. In March I had my second cataract surgery. My vision hasn’t turned out how we had planned – and I had additional surgeries planned to get there – but that is on hold now. It too is in a holding pattern.

    So, I am waiting, and while I wait the cancer grows. But also with the waiting, I have time to consider the options, time to exercise and get stronger, time to think about how I want to spend my time over the next year. There is a freeing that happens – an ability to let go of things that I don’t want to do, an ability to put things on hold until all this gets figured out – and all the unknowns start to become more known.

    There is also a new appreciation for sunk costs. The idea is that when you make quality decisions, they should be based on the future, not the past. However, we have a tendency to say things like “but I’ve spend x years on this, I might as well finish it”. The x years spent are a sunk cost. It is in the past. It should not be used as something that influences future decisions. Being told you have cancer helps you see the sunk costs that are affecting your decisions. The focus becomes only on the future (with a high priority on the immediate future), with no regard to the past. So now I shall think on the future, but first, a nice long bike ride … Oh ya, and on Saturday we are going sailing on the USA 76 Challenger from the 2003 America’s Cup.

  • Humour in the moment – which boobs should I wear?

    In this moment, we (Scott and I) often find ourselves laughing at things that are rather absurd, but real none-the-less. I recognize it clearly as a coping mechanism, and something that is definitely needed. But I’m also aware of how easily something funny can turn into something not funny.

    I recall back in my undergrad days, one of my friends had cancer. She had cancer before I knew her, and had a re-occurrence. I did not know her well, but well enough that I remember her clearly. Last I had heard she had two beautiful children and was doing well. I mention her because of a particular story. At her wedding shower (she had recently been diagnosed with the re-occurrence), we were laughing about this or that, and for some reason the jokes turned to wigs. There was laughing at first, but then a sudden transition to tears. This is what I’m aware of every time I laugh about something. I’m aware that at any moment that laugh will turn to a cry.

    Today’s laugh was about prosthetic breasts. I never even occurred to me that one would make special prosthetic breasts for swimming. They even make aerodynamic (or I guess aquadynamic) prosthetic breasts. Who knew? I was reminded of Aimee Mullins TED talk about her 12 pairs of legs. She talks about how having various legs allows her to be different heights. She talks about legs as things that allow her to specialize her superpowers (when she wants to run fast, she has special legs for that). So that got me thinking about fake boobs. You see, if I don’t opt for reconstruction, and if I end up with cancer in both then I too could have multiple sets of prosthetics for multiple purposes. I could have bigger boobs to fill out my favourite shirt, or smaller ones when I want to appear more professional. Then of course, it occurs to me, that people who saw me regularly would find it rather odd that my chest size kept changing, and how would you go clothes shopping? Which boobs would you wear? And if I were to get into competitive swimming, would the boobs I choose to wear affect how fast I swim? Would that be considered cheating?

    In all seriousness, I am thankful that the surgeon highlighted that a mastectomy is a real possibly. Not that I want one (the whole idea scares the crap out of me), but that I have a little more time to mentally prepare for it. When the diagnosis is in, and the treatment options are presented, I will be better prepared to make a decision. I at least will have had a chance to explore the options. It never would have occurred to me to search the Internet for breast prosthetics. My fear of being ‘lopsided’ does have some solutions – but frankly, given that I hate wearing bras, I’m still dealing with choosing between two bad options. Reconstruction means more surgery, more complicated surgery, and more healing time. No reconstruction means a life of prosthetics (at least for formal settings).

    On a related note, Scott and I went for a walk around Sausalito on Saturday. I notice that I was looking at other women’s breasts. I had never really taken notice of other women’s breast before – but now, I find myself drawn to them. I am looking. I’m not even sure what I’m thinking when I’m looking, but I am certainly finding myself drawn to look. It is all very odd. Perhaps I’m admiring? Perhaps window shopping? Who knows.

  • How do you prepare to lose a body part?

    When the surgeon told me that most likely I would need a mastectomy I did not really internalize what that meant. When a new friend mentioned that it was like an amputation, that in some ways helped me see the scope of the surgery.

    It becomes even more real when I think that this could happen soon. It will likely happen soon – like, within the next 2-3 weeks. By July, I will likely not have my left breast.

    One of the things I need to think about is reconstruction. The state law says that insurance companies must provide coverage for reconstructive surgery after a cancer surgery. So, I have the option. The decision needs to be made before the mastectomy as it affects how the surgery is done.

    One of my first thoughts when I heard mastectomy was that I did not want to be lopsided. I didn’t like the idea of having one breast – of course, this was before I found out that there might be another malignant tumor in my other breast. So, with that, I might actually end up with bilateral surgery. One thing that plays into my decision is that I HATE bras. So, wearing a prosthetic to make me look even doesn’t at all sound appealing to me.

    So, I can logically think about what I want, and how this might play out, but I cannot emotionally prepare. I have no idea even where to begin with the emotional side of this decision. How does one even begin to prepare to lose a body part?

    [Correction: The law pertaining to insurance companies covering the cost of breast reconstruction post breast cancer is actually a federal law – The Women’s Health and Cancer Rights Act of 1998]

  • I am an academic

    Last week, I was reflecting deeply on who I am and where I want to go. I did not get shortlisted for my dream job. Part of the reason for this is that they had an ample sufficiency of candidates. So many candidates, that they didn’t need to consider someone who had not yet completed their PhD. My concern was, if they had so many candidates, then it is a sign that the market is flooded. This was a position that I was qualified for and well suited for – so I found myself wondering, is academia for me? Do I want to fight for the limited number of faculty positions, especially when the faculty jobs themselves are eroding. They aren’t the same jobs they were 10 years ago. And frankly, this isn’t my first career. I don’t have the energy nor the desire to climb the ladder from the bottom rung.

    So, I was also looking at consulting, and looking at careers at large high-tech companies. I’m in silicon valley after all – there are 10-20 new instructional design jobs posted every few days.

    Then came breast cancer – and with it a chance to reset – but also a lot of deep reflection – with more deep reflection to come I’m sure. A bit of advice I was given from an academic friend (and please, if you are not a cancer survivor, hold back on the advice) was that one approach is to treat the disease with curiosity. Scott and I had already decided that we would treat is as a new adventure – the next chapter in our lives.

    Curiosity is a trait of an academic. And I realized that I want to approach this problem as an academic. I want to read the literature to figure out what I’m dealing with. I want to write about my reflections throughout the process. I want to look at how I might use my reflections and this process as research – can I do an auto-ethnographic account of my experiences as a breast cancer patient? It was then that I realized, I am an academic. I want to approach my experiences in the world through the lens of a scholar – not through the lens of a practitioner.

    I am now thinking, that once all the unimportant stuff in my life gets peeled away, the essence of who I am will rise to the surface. That has started now, and I expect that as the weeks progress I will find out more interesting things about who I am.

  • What should I hope for?

    While I await the biopsy results, and other test results, I find myself wondering – what should I be hoping for? If you are going to have breast cancer, the next question is, what kind of breast cancer? The problem is, I really don’t want to do a lot of reading about the different types of breast cancer right now. I only want to know about one type – the best type to have, whatever that is, so that I can hope that is what I have. But I don’t know enough about breast cancer to have even the foggiest idea of what I should be hoping for.

    One thing I keep hoping is that it doesn’t spread to my lymph-nodes. I know that spread is bad – so I hope that it is localized. Of course, anytime I feel the slightest bit of anything on the outer edges of my breast I get concerned. Am I feeling it spread to my lymph-nodes? Are things moving along fast enough?

    Now that I have told my family, I see they are going through the denial phase as well. They are saying, ‘the results could still come back negative’. Perhaps that is true, and nothing is confirmed until the biopsy results come back, but that doctors were pretty clear. I’ve had three different specialists say that ‘they would be surprised if it isn’t breast cancer’. I think I stopped that line of thinking when I saw that they changed my current conditions status on my health record. My current health conditions now list ‘breast cancer’. Seeing that in writing, at that moment, was pretty emotional. I think it was then that the reality set in.

    The radiologist reports say ‘highly suggestive of malignancy’ (BI-RADS 5) on the left breast and ‘suspicious abnormality’ on the right breast. The BI-RADS classification of 5 has a greater than 98% chance of malignancy. And so, although others are going through denial, I think I am ready to move to the next phase – bargaining. So, now I am asking myself, what should I be hoping for?

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