BC Becky

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

Tag: Identity

  • My quantified and qualified self

    I started writing this post a few days ago, but never found the time to finish it. Today is a day off of doctors appointments, although I am expecting a call from the oncologist (onc) at PAMF regarding the results the tumor board there.

    Let me start by saying I’m a mixed-methods researcher. That is, that when I do research, I look at both qualitative and quantitative data, as both help to provided a complete picture. With this blog, I have mostly been dealing with what I call my qualified self – that is my feeling and my perceptions of the world. When I think about my quantified self, I’m thinking about the numbers – what’s my current weight, what are the letters that represent my diagnosis, what are my various counts, etc.

    The increase of mobile and now wearable technology has spawned a whole movement known as the quantified self. Scott actually attended a meet-up with people regarding the quantified self. For a few years now, we have been quantifying ourselves by having a scale that connects via wifi to the Internet and reports our weight and body fat measures. This information is nicely graphed for us. One thing this has provided is a clear picture of when I started to lose weight – June 2nd. Without the automatically measuring scale, I would not have been able to so clearly see the progression.

    June 1st was the first time I notice that something wasn’t the same with my left breast. I panicked a little at first, but then told myself it was nothing – of no concern. I convinced myself for a full week that it was nothing. Then on June 9th I went to see my family doctors … and that is when my life began to change.

    Another area where I measure my quantified self is when I bike. I mostly like to track time rather than distance, because really, it is the length of time on the bike that matters most. For this I use an app on my phone called Runkeeper. One advantage to tracking my quantified self is that it provides me with motivation. When I started to write this post, I wanted to report on my bike ride, but I had not done one that day. That gave me the motivation I needed to get out, when I wasn’t really feeling like it – I had the strength, just wasn’t in the mood. Of course, once I got out on the bike I was very glad to be out riding.

    Today, I don’t have any appointments (at least not right now). I’m going to try another attempt at Mount Hamilton from the Fire Station. Last time I tried it I rode 15 km (exactly half was up hill). That was June 10 – the day after the appointment with my primary care doctor, and two days before diagnosis. Today, I’m going to try the same ride, with my folding bike (I find it a little easier to climb on my foldy – plus my road bike is in the shop for a service). It takes about an hour to drive up to the fire station. One really nice thing about this ride is that there is very little traffic during the week. I usually get passed by two or three cars in the hour and half that I’m riding … although I suspect today might be a two hour ride – I’m going to try to make it …

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    When I go to the doctors, I see mostly my quantified self. I am the numbers that are represented by the pathology. However, the doctors actually don’t seem to see me that way. In many ways, they actually seem to be more about the qualified self – they are asking me to make decisions based upon how I feel and what is right for me. They aren’t focusing on the quantified self – at least not yet – now, if I end up in a clinical trial, I expect that will become much more quantified!

    This whole clinical trial thing is interesting. There is so much research going on around breast cancer treatments, that there is guaranteed to be one aspect or another of my treatment that is associated with some trial or another (my surgeon wants to add a tattoo to my nodes if they don’t have cancer). In some ways, I don’t want to be in too much of a trial, as that limits things. For example, if I’m on a chemo regime as a part of a clinical trial, then all my tests and such need to be done at Stanford. I cannot get a portion of my care at the closer PAMF. If I’m not in a trial, then I could, for example, go to PAFM for radiology – which is nice, because the one thing I did like them most at PAFM is their radiology department. Potentially, I could go to PAFM for chemo treatments – even though the onc is at Stanford. It is good to know that the option is there.

    And now I need to make breakfast … fuel for the bike ride later today.

  • 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.

  • 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 …

  • 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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