BC Becky

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

Tag: disease

  • Seriousness is sinking in

    I’m starting to shed my hair. I noticed at first when I use the toilet, and then again when I dried my hair after the shower – seeing enough bits of hair in the towel that I had to throw it in the wash!

    At Wednesday’s oncologist appointment, when I asked about surgery timing, specifying my desire to spend a week in Hawaii before surgery, the point was made not to push it too late. There is enough time for that week, but I should not plan on pushing surgery out 2-3 months. The comment was in the lines of “we’ve done all this chemo, don’t waste it”. This cancer won’t be killed that easily – even if the masses shrink to smaller sizes they need to be removed.

    Yesterday, I got a short synopsis of the pathology of the third mass (the small one in my left breast). It is DCIS PR/HR+,HER2- with a small Ki-67 (<5%). This is sometimes called pre-cancerous or cancer in the duct itself, as it has not yet spread to the surrounding breast tissue. DCIS has a high likelihood of turning into IDC (which my other two masses are). So this is my magic number three cancer.

    I say magic number three because that seems to be my meditation number. When I took swimming lessons last fall, the instructor has me breath after every three strokes. Ever since then, three seemed to be a better number for me for meditating. When I do yoga, I hold poses for three breaths, and when I try to calm my nerves to sleep I count my breathes 1-2-3 and then repeat. So three seems to be my number.

    So, now that I have three cancers, it can stop there! No need to go any further!

    My plan for a triathlon before surgery will likely need to be reschedule until after surgery. The window won’t be long enough for me to manage it and Hawaii at the same time – and Hawaii is definitely something I plan to do (Maui more specifically – easy to get to from here and an easy island to get around).

    I do, however, have a new plan for after surgery. One of the wonderful ladies on the Flat and Fabulous Facebook group has inspired me to aim to trapeze at Club Med Cancun in the fall of 2015. I want to be fully recovered from surgery such that I can do something so crazy as swing from a trapeze – plus they have sailing and kayaking too … some nice serious activities that require upper body strength.

    I am finding this process of hurdles not dissimilar to doing a PhD. At each phase there are additional hurdles to overcome. One bit of advice we are given in the PhD is to celebrate each hurdle as you complete it. My first hurdle is AC chemo. I’ve done two treatments, so one could say 1/2 way, but that would not be fair … as I still need to recover from this second treatment before I can truthfully call it done!

    I am happy that I am starting to get some productive days back. My life isn’t all about cancer anymore. I am re-emerging into my academic life, trying to pull together as much as I can to make a dissertation out of my existing thesis project. I have a couple of things that need to happen in the fall that hopefully I can make happen. If they do, then I shall have enough data to turn it into something. I have learned a lot, and do have a lot to share – I just need close it off and put it all together.

    So with the seriousness of this disease sinking in, what is also sinking in is my need to focus on the future – and on what comes afterwards (or at least what I’m going to do with the next year and a half that doesn’t involve chemo and cancer surgery).

  • 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.

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