BC Becky

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

Author: Becky

  • One more chemo day done!

    Today was a busy day up at Stanford. I had an oncology appointment, chemo infusion, and then a workshop on make-up (sponsored by Look good feel better). I’ll talk about the first two here, and the latter in a separate blog post.

    The good news from the oncology appointment is that the thing my oncologist felt in the right breast last time isn’t there anymore. So now, both of my breasts feel like ‘normal healthy breasts’ rather than breasts with tumors in them. This doesn’t mean that all the cancer is gone (they cannot tell that until they remove the breasts and do pathology on the breast tissue), but it does mean that the chemo has significantly reduced the size and texture of the tumors. In short, the chemo is working.

    We decided to reduce the amount of steroid I’m taking. My oncologist thinks that several of the side effects (including the chemo brain) are worse or caused by the change in levels of steroid in my system – so the side effects happen when the steroid wears off. If there is less steroid to begin with, then the change will be less and therefore the side effect less. It is an interesting argument (and not at all intuitive). So now I’m taking less of the steroid and taking it in pill form rather than IV (it means the infusion actually takes longer as I need to wait 30-minutes after the premeds, which I didn’t when all the premeds were IV). I think it is actually the same dose of steroid that I took for the first three rounds of AC, and I tolerated that very well. I’m crossing my fingers that this makes the chemo brain fogginess go away.

    My oncologist also looked at the neuropathy (and did some tests). So far it is pretty minor, but it is starting to effect my balance. I need to start being more careful about biking, but I am still OK. I don’t think it is bad enough to stop biking with my current bikes yet. If it gets worse and for post-surgery, I’m looking into borrowing a recumbent trike, so I don’t need to worry about balance issues, but also the trike format with underseat steering is easier to get into and out of and doesn’t require me to put any weight on my arms for riding post-surgery. If the neuropathy gets too bad, then we stop the chemo and move onto surgery. I don’t really want to go that route, as it would ruin all the plans I have in place for my visit to Canada for American Thanksgiving and Hawaii for my pre-surgery memorial celebration.

    On the infusion front, things were pretty routine. We’ve pretty much got things down now – and today there were no delays in the ITA (infusion treatment area), so things moved along pretty quickly. Since this regime doesn’t make me sick, I can actually get some reading / writing done while in the ITA – although we often have visitors which also provide a great distraction and helps the time to pass quickly.

    So far, I’m hopeful for a stronger cycle – so much so that when I got home today I went for a swim. I’m not as strong as I was at the end of the third round of AC, but that’ll take time to come back. I swam 800m, which is a good start :-). Over the next few weeks I’ll also need to concentrate on doing longer walks – in preparation for our hikes in Yosemite for our anniversary and Mount Tam on October 11 (friendly reminder – you can sponsor us on the links below – every little bit counts – consider donating $7-one dollar for each mile hiked, $12-one dollar for T-Chemo treatment, or $20-one dollar for each week in chemo, or if you really want to sponsor us, you can buy a prayer flag for $100).  Thanks.

    To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd
    To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue

  • When I don’t blog … and an update

    When I don’t blog, please don’t worry. Take a look at rjh.goingeast.ca to see if I’m blogging over there (I have been writing about patient engagement more generically on my academic blog). I am touched that so many people are reading my blog – and that they worry when I don’t write.

    Writing everyday is work. It takes time, but it also takes inspiration. I try to remind myself that I will want a record of how I’m feeling – and that I should write it down. But I don’t always have the words. I sometimes feel like I just don’t have anything interesting to say. On those days, I don’t blog. Do you really want to know that I spent the day resting and watching TV? Perhaps. Perhaps I should throw out a quick message that says “I’m OK, just taking a day off” … I will need to think about that …

    With the T-chemo (Taxol), I’m now on a weekly schedule. There are a bunch of side-effects, some of which get better as my body gets used to the new regime, others which are cumulative. I don’t yet know which will be which. So far, the worst of the side-effects (face & eye redness, nerves firing off, joint pain) seem to be of the type that gets less severe as my body gets accustomed to the new regime. So far, this cycle has been much better than last – I am feeling my strength coming back.

    I do, however, note that I’m really productive on the first couple of days of the cycle – Monday, Tuesday, and part of Wednesday (both academically productive and errand running productive). Thursday and Friday are usually the days I mostly want to sleep and watch TV. I feel fatigued, and I’m not motivate to get out. That being said, Thursday is also the day I am trying to get out for a regular walk with my friends – so the distraction that is caused by a visit with friends makes the day go a lot better – however, it means I’m not likely to blog that day. The limited energy that I have is spent walking and visiting with friends – there is nothing left for blogging.

    So, if I’m not blogging, imagine me out walking with friends (next week, I’ll be walking on Thursday, sailing and camping on Friday – so likely won’t be blogging Thursday through Saturday – but I shall be well – enjoying the good company of friends and communing with nature).

  • Breast cancer prevention

    It is with mixed feelings that I read about breast cancer prevention. It is not that I want anyone to get breast cancer, I would not wish that on anyone. It is just that when I read about prevention, I enter that world of regret. I start running through the if onlys…

    …if only I had thrown out the water bottles with BPA sooner
    …if only I ate less red meat
    …if only I ate less sugar

    In general, I’m very good at not regretting the past. There is nothing I can do about it now, so no point in dwelling on it right?

    But still, when I hear of a charity that focuses on breast cancer prevention, I’m filled with both regret and doubt (can we really prevent breast cancer?).

    One charity that works to help prevent breast cancer by providing public advocacy and education campaigns based upon scientific evidence (not personal opinion – there are way too many personal anecdotes about what causes cancer!) is the Breast Cancer Fund.

    On October 11 (Canadian Thanksgiving Weekend), Scott and I will be doing a day hike that is a fundraiser for the Breast Cancer Fund. It is a good chance for us to meet some new people (we’ve joined a team captained by a friend-of-a-friend) while going on a hike up Mount Tam in Marin County (just north of San Francisco). It is an area that we haven’t yet explored, so that too should be fun. Mostly, it is a great excuse to get out, and help me get motivated to train for my walk down Mount Haleakalā in December. As this is a fundraiser walk, we could use a little help with fundraising …

    To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd

    To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue

  • Before all the pinkwashing was Terry Fox

    I found it interesting the other day, walking with new friends, that they had never heard of Terry Fox. As a Canadian, we are taught about Terry Fox’s worldwide legacy, so I somehow expected that those affected by Breast Cancer (and activists within the breast cancer community) would have at least heard of him. Terry Fox is a Canadian hero after all. The annual Terry Fox Run (today in Canada – although it is an international event) is the world’s largest one-day fundraiser for cancer research (according to Wikipedia).

    I don’t know if it is because of my age, but those of my generation (and older) actually remember when Terry Fox was running across Canada in his Marathon of Hope. And I remember the sad emotions associated with the day that Terry had to stop his run because his cancer had returned. Although I don’t remember doing any Terry Fox run’s myself, I do remember picking up my brother after he did the run one September back when I was still in elementary school (not sure what year this was – but early 80s – so picture was taken at one of the first Terry Fox runs).

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    Terry’s journey was done at a time before cause marketing was a big thing – actually, in doing some more reading about it, Terry Fox actually turned down opportunities for corporate sponsorship. Today, when “pinkwashing” is a huge issue, it is nice to see that the annual Terry Fox Run is still run without any corporate sponsorships.

    Note that I don’t think cause marketing is a bad thing. Cause marketing helps a lot of charities raise a lot of money – when done right it is a ‘win-win’ for both the corporate sponsor and the charity – and honestly, it is a lot better than nothing – which in many cases is the alternative.

    Terry’s journey continues to inspire school children and adults alike (may schools also do Terry Fox runs in early September every year). One of the most touching notes I received when I was first diagnosed with breast cancer was when a friend said that her 5 year old daughter said she would do the Terry Fox run for me. As I write, it still brings tears to my eyes.

    You can donate directly the Terry Fox Foundation at http://terryfox.org/.

    Terry Fox Memorial, Thunder Bay

    The picture above was taken at the Terry Fox memorial just east of Thunder Bay Ontario on our Going East bike tour. It marks the spot where Terry had to end his Marathon of Hope.

     

  • Today’s side-effect – cognitive numbness

    I was fine this morning. I woke up feeling pretty good, but have since experienced a cognitive decline. I did get out to run a few errands, which involved driving. I was fine when I first set out, but not doing too well by the time I got home about 90-minutes later.

    After my bike adventure yesterday, I brought my wheel in for repair. The rim is dead – so a new rim was in order. The total cost of this repair will be about $200. Although the rim itself is only $60, the cost of rebuild the wheel in labour adds up. I suppose this isn’t unreasonable given the bike is over 10 years old, and this is the first significant equipment failure.

    Walking into the bike shop I began to notice some numbness in my step. Noticing that I’m not completely feeling my feet. I associate that with neuropathy. On the drive home, I begin to notice that my multitasking abilities are going. I notice that there is some mental separation going on between me and the world around me. The best way for me to describe it is almost a drunkenness. It is at this point, that I make my way home and decide that I shan’t be driving until this cognitive numbness fades. Even as I type, I have numbness in my hands – again, I had originally thought of it as neuropathy, but now I’m seeing it more as an overall cognitive numbness rather than a specific feeling of numbness in my hands.

    I tell myself, that now would not be a good time for making any major life decisions – or even doing any serious academic work. My mind is just not as sharp as it should be.

    I am still planning to go out for a bike ride. I think the exercise will do me well, and hopefully will help clear my mind of the fog. With my road bike out of commission, I’m going to ride my ‘bent today. I had a hint of some nerve pains last night before bed, but they haven’t returned yet today – so I’m hoping they stay away. I want to get the bike ride in today just in case the nerve pain starts again – if it hits as bad as it did last cycle I won’t be physically able to ride – so must get out while I can. On the fatigue front I’m doing much better this cycle than last. I’m not feeling the overwhelming tiredness I had at this time last cycle. So, there is hope that I am rebuilding my strength.

    Definitely experiencing ‘chemo brain’ today!

  • The conversation project – and some end-of-life thoughts #medx

    One of the bits of recommended “reading” in the Patient Engagement Design MOOC I’m taking is about The Conversation Project. The video talks about the importance of having conversations about what you want your end-of-life to look like. So that when your care givers are facing decisions, they know what you really want. I’m not sure why, but I was reminded of Randy Pausch Last Lecture: Achieving Your Childhood Dreams (if you haven’t seen it, I highly recommend it).

    I’ve had a few of these end-of-life discussions with Scott – when the thoughts come up, I usually share them with him first, before I blog about them. I choose to blog about them. In part, this is so that the rest of my family also know what I want, but also, so that if the time comes, there is a written record of what I want. I know I should do a bunch of legal paperwork – we’ll need to do some of that paperwork before I go for surgery in December – but for all those little details, I have chosen to document them here. More specifically, I talk about how I want my ashes spread in the volcano on the Big Island of Hawaii.

    I haven’t yet talked about what treatment I want during surgery. There are several things that might come about during my double-mastectomy, especially if I opt for reconstruction. Several of the treatment decisions are automatic and documented clearly in the consent protocol. I will consent to a double-mastectomy and sentinel-node biopsy. If the sentinel nodes have cancer, then they will continue with an axillary lymph node dissection. Because I’ve had neo-adjuvant chemo, they will be more aggressive with auxiliary lymph node dissection if they find cancer – as it means the chemo didn’t kill it. The cancer part of the surgery is actually the easy part, as the protocol is pretty clear. The questions will come if there are complications surrounding reconstruction (assuming I go that route).

    I’m not actually ready to provide detailed directions on what I want in that area – as it will depend a lot on how the discussion goes with the plastic surgeon. I need to know what my real options are, and what options make the most sense. Until I have more information, I won’t be able to say what I want.

    Now, if there are complications during the surgery, I would take the same approach as “Joe Neyer” in the video. However, his approach doesn’t really apply unless, at some point, I am diagnosed with metastatic disease. At that point, I would want a directive that involved ensuring quality of life. People can live for many years (8-10) with metastatic disease, but for me that is only worth it if the treatments to keep the disease in remission both work and don’t totally suck. But that isn’t a bridge I need to cross yet. After surgery, I’m still hoping to hear that I’ll be declared NED (No-Evidence-of-Disease).

    If I have complications during the surgery that mean I’ll need to struggle to survive, then I would still want them. I’m not ready to die yet. Actually, I still think of myself as rather healthy – so despite the cancer, I’m healthy. As my energy returns and I bounce back from chemo, I hope to start demonstrating how healthy I am!

     

  • How I’m doing and a bike adventure

    I’ve been blogging a lot over the last two days, but not really talking about how I’m doing. I haven’t really said much about the side effects I’m experiencing with the Paclitaxol (taxol) and various premeds.

    One of the premeds is a steroid, which certainly leaves me feeling bouncy for the first two days. I’m trying to harness that extra energy by getting lots of work done, but also getting out for exercise. Last week, I was still feeling the effects of the mouth sores from AC and low red blood counts. Yesterday, when they tested my blood it was almost at it lowest – so not surprising that I was fatigued most of last week. Today, I’m feeling a lot more energetic, but I cannot say if that is from the steroid or if it is a sign of improvement in the red blood counts. In the last round, I started feeling nerve pains on Wednesday, which got really bad Wednesday night, were eased a bit on Thursday with pain meds but worsen with joint pains and fatigue. It was pretty horrible. Things were still problematic on Friday with nerve pain, joint weakness, overall fatigue, and some neuropathy as well. Overall, it wasn’t a great week. So I’m waiting to see how things go this week. My first side effect (redness in the eyes, face, and neck) have been much less this week that last – so hopefully that is a sign that the side effects will be less.

    I had hoped to get out for a 20km bike ride today. That was my goal. I choose my fastest, lightest bike (my road bike), so that there was some hope of success. I was cautious when I first started riding, and definitely felt the weakness associated with the low red blood counts but also with a two week break in significant exercise. Once I climbed the hill onto the path, I was feeling pretty good – taking it easy, but enjoying the ride. When I got to about 7km, I felt that I might actually make my 20km goal. Then at just after 8km I felt a thumping and thought I might have something stuck to my tire. I examined the tire, didn’t see anything, tried to ride again but it was worse. After another examination, I noticed a bulge in my rim. Seeing this as a sign of imminent rim failure, I turned around but soon discovered the back wheel would no longer take my weight – I was destined to walk the bike home. Fortunately, although I was 8km into my ride, I wasn’t 8km from home (my ride takes me back and forth along the path, so I pass my house multiple times). I ended up walking almost 3km.

    2014-09-09 17.44.37

    As I walked home with my bike, along the path, during the height of peoples’ daily commute, I was struck by the sheer number of people who slowed down to offer assistance (more than 20 people slowed down and asked if I was OK in the 30 minutes I was walking on the path). One person even asked if I needed a spare tube. It is comforting to know that if I did end up with a flat on the side of the path, that I would have no shortage of people willing to help me change my tire.

    One side effect that I’ve had since the start of taxol has been insomnia and disrupted sleep. I’m finding that through the first half of the night I wake up hourly (I usually take a peek at the clock). I may feel that I’ve slept for a long time, but wake up to see only an hour has passed, and I have difficulty getting back to sleep. This repeats itself until about 3 or 4 in the morning, and then I seem to sleep for 2-3 hours. I may end up in bed for 10 hours, but only get 7 hours sleep. Last night I tried something different – I was wired up from the steroids, so rather than trying to sleep, I just stayed up and worked (wrote a lot of blog posts and answered several lingering emails). I didn’t go to bed until 2am, but unfortunately, I still found that I was waking hourly for the first part of the night. Today, with some exercise, we’ll see if that helps with the sleep. Unfortunately, it didn’t involve as much aerobic activity as I’d hoped – so not sure if it will make much difference. Hoping to get out for a ride on my ‘bent tomorrow.

  • Wanting to be part of something bigger #medx

    I so want for my experience to be part of something bigger than just me going through cancer. I want it to be used to help learn more about cancer, or to help teach medical students, or something – pretty much anything – to make this experience something that others can learn from.

    I do think there is room for patient experiences in medical education – I just haven’t figured out how to make my experience be one of those experiences that gets to count. Interesting that as I wrote this, a note about the Stanford Medical X conference crossed my twitter stream. This is a conference that is at the intersection of medical education and emerging technologies – it sounds perfect for me! It was last weekend, so I’m sad that I missed it 🙁 I’m going to have to keep a close eye on their site, eagerly awaiting an announcement on how I might be involved in the conference next year!

    In another interesting twist, a few weeks ago I came across a free online course (MOOC) on Patient Engagement Design. I figured I might as well sign up, as it would give me a better sense of what physicians think of what I’ve been calling patient advocacy – but I’m wondering if the better term is patient activation (seems like a weird choice of words to me – like I’m a robot that needs to be turned on) – anyway, at least part of the reason for attending the course is to learn the lingo. I’m particularly interested in the intersection of patient education and social media – and perhaps I’m a good person to be studying this?

    I do find it curious that the MOOC does not include any form of “statement of accomplishment”. It has been placed on the internet, and runs for free, but there is nothing put in place to motivate students to complete. As design characteristics of MOOCs is something that I typically would feature in my other blog, I expect that I work through this course I’ll be cross posting my reflections to – http://rjh.goingeast.ca.

    PS: MOOC stands for “massively open online course” … it has been a bit of a phenomenon in higher education over the last 2-3 years. I’ve been rather involved in a few of the MOOCs and done some research (and co-authored some articles) in this area.

     

  • Food Angst … never surrender

    For much of my adult life, my diet has been about control. I can choose to control what I eat, and as a control freak that is important. I’ve tried several different diets to no avail. Mostly, I’ve learned that my body doesn’t like some foods and it likes others. I’m lactose intolerant but my body is happier when I eat dairy – so I try to stick to dairy that my body likes, perhaps with the exception of ice cream. I may eat a little more ice-cream than I should, but at least it is organic “healthy” ice cream. That’s got to count for something.

    I went through a phase where I didn’t eat gluten. That didn’t go over well. My body likes wheat. I’m allergic to alternatives (quinoa and spelt).

    I’ve learned to listen to my body. Certain foods cause it grief (e.g. tomatoes cause eczema to act up, peppers and walnuts cause heartburn), so I avoid them. Other foods I enjoy.

    Going through chemo has meant that some rules had to be applied to what I eat – e.g no sushi or cold cuts for risk of listeria – but otherwise, all bets were off. I was given free reign to eat whatever I wanted, in part because there were days that I just needed calories. And there is that trust that, since I’m considered “healthy” for a cancer patient, that my diet and exercise regime are already good.

    However, at support group the question comes up “how has your diet changed as a result of cancer?” There is often a discussion about the link between cancer and sugar. I’ve done those diets too BTW – I went totally off sugar and lost a lot of weight but also lost energy. I went totally off sugar substitutes, not wanting my diet to be full of chemicals. I now generally avoid refined sugars, but I am guilty of eating pasta and white bread but I avoid potatoes. I find that too much of diets are fads – and little is truly known about what actually works or doesn’t work. I question whether there is such a thing as a “cancer diet”. Sure, people who used to eat a lot of fast food and junk, stop eating fast food and junk, they do better – but does that mean that sugar is the cause? An the article that crossed my stream today about the link between soy protein and cancer. This particularly annoys me, as it treats all soy as if were one thing. So the highly processed soy protein isolate used in the study is being made equivalent to the whole soy bean (edemame). When I asked the cancer nutritionist about soy, her comment was that whole soy such as edemame and tofu were good, but soy protein isolate which is often used in supplements (and check your granola bars and breakfast cereals) is a bad thing. So, when I read that article, it feels more like fear mongering about all soy, when in fact, some soy might actually be good for you. Note that the asian diet that is mentioned, which is typically a low cancer diet, involves a lot of whole soy products rather than highly processed derivatives.

    Before cancer, I ate a pretty healthy balanced diet, with mostly organic fruits and vegetables and definitely organic meats. Frankly, there are so many variables at play when it comes to diet – I’m just not convinced that whether or not I choose to have a little more ice cream or a brownie will have any affect on my overall health. I just hate being subjected to the guilt around my diet. I hate questioning and feeling guilty because my body is craving red meat, so I choose to have a steak for dinner (buffalo, not beef – so hormone free, grass-fed).

    I don’t want cancer to dictate what I eat. Having cancer means I have lost control of a lot what my body does. I have lost control over how I physically feel, and I’ve completely lost control over my schedule (as much as I try to manage it), and if I could only gain control over my red blood cell production! There are too many areas of my life where I have lost control. I’m not willing to give up control over what I choose to eat. Now, there are days when I don’t really have much choice – queasiness or mouth sores have severely limited what I could eat. I just hate that “cancer diets” propose to make me feel guilty for eating food that I want to eat!

    I’ve decide I have a new theme song when it comes to cancer diets … I’m going to “Never Surrender” (one of my favourite songs when I was teenager) …

  • Another day, another infusion

    So today is my second Taxol infusion. We are definitely “regulars” at the infusion center. When one of the computers started its chant, we knew what it was saying, and what to do about it. If you listen carefully, you can make out that it is saying “low power, low power, low power” … so when it started, I sent Scott off to plug in the offending device so it didn’t drive us (and everyone around us) crazy.  We are now set up with a table, so that we can both sit here an type away at our computers – which helps immensely with the passing of time. The blue glow on the top of my bald head is amusing!

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    In the gap between blood draw and my infusion, we walked over to my tree for a picture.

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    We had a few extra minutes, so I laid down on a pile of wood nearby and watched the world go by. It is sunny out, with a nice cool breeze. It really is too bad that we cannot do treatment outdoors – perhaps under a tent. They could set up a nice outdoor treatment area in one of the various wooded fields nearby. That would be pretty amazing – I’d definitely opt for outdoor infusions! Anyways, I took a snapshot of my view as I was laying down enjoying a brief time in the outdoors. Interesting that as I looked up there were three different kinds of trees in my view!

    The treatment regime I’m on is weekly Taxol for 12 weeks. So, I have infusions every Monday until November 17th (if all goes well). Taxol is also sometimes given as biweekly (once every two weeks) for 4 cycles. That type takes less time and requires fewer trips to the infusion centre, but it also has more side effects. So, I opted for the less convenience but also less side effect variety. In theory the side effects that I experience after the first cycle will be less severe over the next cycle. We’ll see how that goes!

    When they start taxol, there are often allergic reactions. The allergic reactions are to the preservative used in the Taxol rather than the taxol itself. So, a taxol treatment begins with pre-meds (IV Benedryl, Decadrone (steriod), and pepsid). I mostly notice the pepsid as it calms my stomach when it it given. Each of the pre-meds takes 10 minutes. After all the premeds are given, we wait for 30 minutes for them to take effect. The taxol itself will eventually take 1 hour, but for the first couple they do a slower drip (the nurse follows you carefully to ensure there is no reaction). So, I expect to be in the infusion area for about 3-hours once everything gets started.

    Last week, my labs indicated that my red blood cells, hematocrit, and hemoglobin were low. Last time they were this low, I had a transfusion. Throughout this week I also felt more tired / fatigued than I did through my last round of AC. So, I’m now waiting to hear from the doctor to find out what if anything we are going to do about it. I’m looking forward to having my energy back!

     

     

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