BC Becky

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

Category: recovery

  • Food complexities

    Going gluten free just before travelling internationally was, perhaps, not one of my best decisions – but it was a prudent one.

    One complexity is that I don’t know all the tricks of the trade yet. I am not educated enough about reading labels to find the hidden gluten. Just occurred to me that you could make a good educational game, like a crossword or word search, where the words included are glutenous words that don’t necessarily sound like gluten.

    In some ways I’m looking for the gluten free diet to be my panacea. Originally, I had hoped that the CPAP machine would be. The CPAP machine has made a huge difference for me. I’m sleeping a lot better now. Although, I am finding I don’t necessarily “need” it now that I’m not on any hormone therapy. It highlights to me the role estrogen plays in my sleep. Unfortunately, when I get back to California, I’ll be going on ovarian suppression, so the estrogen levels will again tank, and the worst of the sleep apnea will likely return.

    There are a lot of overlap symptoms between cancer recovery and celiac disease. Fatigue is one of them – although I mostly recognize it for what it is, and exercise has been my best treatment to battle it. For the most part, I’m winning that battle.

    So back to the title, food complexities. One of the challenges is that I don’t know how to recognize when something is truly gluten free or not. I also don’t know how my body responds to being gluten free. I can tell some differences right away – so I think, based upon my bowel movements, that somehow in the last 24-hours I’ve been exposed to some form of gluten. That might have been something I ate on the plane or something I ate for lunch after arriving. I don’t know. I’m not familiar enough with my body yet to know what is causing what. I also am not in a position to be only eating things that I know are gluten free. I will be getting many of my meals provided in the next week – I’ve asked for gluten free, but I cannot guarantee it.

    When I think of eating gluten free, I think of some of the struggles my father has had. Part of it goes back to his childhood, when gluten free options were very limited. He came to see eating gluten free as a negative, almost as a form of punishment. He certainly saw it from the perspective of missing out rather than one of exploration. That being said, they didn’t have the same options we do now. There being a fad in gluten free, means that there are many more options.

    The comment that is often made is that it is a life style change. They are not kidding. It is not like any other simple dietary restriction – it is a huge pain. I am choosing to approach it from a bit of a different light. I am approaching it as gluten being poison in my body. That makes it a whole lot easier for me to say no, especially when the thing being dangled in front of me is something that I’d love (like a nice warm brownie).

    Part of me is still feeling a little bit of impostor syndrome. I don’t have a formal diagnosis. I have not yet seen the GI doctor. So, part of me feels like I’m “faking it”. I also didn’t have an immediate response to going off gluten – but it has only been a couple of weeks. I did have a couple of real responses. Changes in bowel movements, clearing up of blisters. I cannot say I’m feeling remarkably better just yet – but then again, I’m also feeling better now that my body has some estrogen in it – however temporary that may be.

    Reading the facebook celiac group, I’m struck by the need to get official opinions on what is happening. The issue is so very clouded with stories of children being diagnosed, or not being diagnosed, as well as those who are going gluten free with no diagnosis and those who test negative but are convinced they are false negatives. Not that their experiences are not valid, just that there are too many people in the group with too many different variants that the information is less useful. Arguably, I’m an impostor in that group, as I haven’t seen the GI specialist yet.

    I’ll be updating things here once I do see the GI doc. I’ll talk more about the diagnosis process once I have some formal experience with it. I’ll also be starting up a new section of my website with Gluten free recipes.

    I’ve choose to approach gluten free, in a similar to the way I approached breast cancer treatment, with a sense of adventure. I enjoy cooking and adapting recipes. I now have a reason to adapt recipes. I can adapt with purpose. So far, I’ve learned that the GF muffins and waffles I made (lemon cranberry) were both quite good hot, but pretty awful cold (so much for airplane snacks). It means that as long as I can throw them in the toaster oven, then they are a good quick snack … just not worth taking along with on a trip.

    One advantage to this diagnosis (if advantage is the right word, perhaps it is a better choice than gift), is that it has relieved a lot of my cancer stress. Unlike cancer, there is something that I can do about it. There is a clear path to treatment. Unlike cancer, were the treatment made me sick, with celiac disease the treatment actually makes me better.

    And so, I know have a non-cancer reason for most of my symptoms, and that makes me feel a whole lot better!

  • Celebrating successes

    One of the things I think is important is to not just talk about the tough parts of cancer and illness, but also to celebrate success – however small or large they are. Sometimes just having a good day is a success.

    The success I want to celebrate today is that I swam 1600m (40 laps in my 20m lap pool). The only other time I’ve swum that far was this time last year – as I was starting Paclitaxol chemo. The chemo regime slowly eroded away my energy and my ability to physically do things.

    I got back in the pool in April. I reported on April 29 that I could do a grand total of 6 laps! Getting back in the pool was difficult. Swimming was even more difficult. It provides a test of both my mobility and my strength. In order to do front crawl, one needs full range of motion. In order to breast stroke, one needs strong pectoral muscles (or at least not horribly weak ones!).

    And so, today I celebrate my success of swimming 1600m. My range of motion is excellent. I’m getting stronger every day – such that now I can do breast stroke for as long as need/want.

    So, today is a good day.

  • Quality of life issues

    In many support group meetings, I have heard women say that they stopped taking tamoxifen for “quality of life issues”. They never explain what those issues are. I didn’t really understand what side effects would be bad enough to warrant that I stop taking a medication – especially a medication that is intended to significantly reduce the likelihood of a cancer recurrence.

    As I have mentioned in a previous post, that I had been struggling with headaches. The headaches were so bad that I was convinced I had a brain tumor. I went so far as to ask for a brain MRI – which thankfully turned out to be clear. It was at this follow up appointment that my oncologist suggested I take a break from tamoxifen. At the suggestion I immediately broke down in tears. I was afraid of not having that protection – tamoxifen reduces the chance of recurrence by 30%. The idea of going off of it was scary.

    I started taking it back on my birthday in early February. Part of the reason for starting on my birthday was so that I would know exactly how long I had been taking the drug. However, I probably started it earlier than I should have. At the time I was still recovering from my major surgery on Dec 17th. I still had severe joint pain as a result of taking too much Cipro. It was almost impossible to tell what side effects where caused by tamoxifen and what was part of the normal healing process.

    So, on the advice of my oncologist, I decided to take a tamoxifen holiday. I stopped taking the medication the same day I flew to Niagara to visit my parents and attend the SMSociety conference. Within two days I noticed a fog lifting from my brain. Two weeks later I was stronger – riding my bike for 30 miles and feeling good about it. My back pain was easing. I was generally feeling a whole lot better.

    After last weeks oncologist appointment, we decided to try to go back on tamoxifen. Rather than taking a 20mg dose in the morning, we would try splitting the dose to to 10mg twice per day. The first morning I took a 10mg dose and within hours my headache returned – in force. I could not think. I constantly felt like I was having a blood sugar low, except eating didn’t help. Again, checking in with my oncologist, we decided to try just 10mg at night. Unfortunately that didn’t go so well either. I was still getting headaches, but it also made my bones ache. I realized then that the chemo recall and neuropathy issues  I was feeling post surgery was actually a tamoxifen side effect.

    There are some side effects that I can live with. I’ve learned to deal with vaginal dryness (thanks to some great advice from my gynecologist). In some ways, I can mostly deal with the joint pain. I can deal with the fatigue. Joint pain and fatigue both respond well to exercise – that is, exercise reduces the impact of those side effects. What I could not deal with was the headaches. Too much of what I do requires me to be able to think straight, and the headaches were preventing me from thinking. I also found that when I went back on the tamoxifen – even the 10mg dose at night – I found exercise difficult. It seem to be sapping away at my energy. I lacked strength. So, I was both weak and unable to think. This is when I really reflected on what ‘quality of life’ means. I realized that I could not live like this. The current protocol calls for 10 years of tamoxifen with a 20mg dosage. There was no way I could do that.

    And so, with the advice of my oncologist, I am no longer taking tamoxifen. I will now add myself to the list of women who stop taking it for quality of life reasons.

    Fortunately, my oncologist is very understanding. He totally understood that I could not manage with the side effects. The line between tolerable side effects and untenable side effects had been crossed. So now we move on to the next option for hormone therapy. In some countries, the therapy that I’ll be trying next is actually the therapy that is given first. Studies of shown that it is actually more effective than tamoxifen – but in some women the side effects are much worse. We have decided on an approach that eases me onto the new medications to see how I react. The first phase is to try a low dose (24-hour) of Lupron (it suppresses ovarian function). If I tollerate the low dose/short acting Lupron, we’ll then move on the injection that lasts one month. If that works, then we’ll add an aromatase inhibitor.

    To be honest, I don’t really understand how tamoxifen nor how aromatase inhibitors actually work. Part of me thinks I should learn this, but another part of me doesn’t want to bother. I’m happy to leave all that biochemistry and biology up to my doctors and trust that they know what they are talking about. From my perspective, all that matters is whether or not I can live with the side effects. If I can find something that doesn’t totally suck, such that I can live with it, then I will.

    On the positive front, I’m no longer taking tamoxifen, and the experiments with Lupron will be delayed until I return from the UK. This means that I’ll be able to think while I’m visiting friends and presenting at conferences. I am so much more excited about the trip now then I was when I was contemplating travel with headaches and bone pain. I’m going to enjoy these next few weeks as much as I can!

  • Belly dancing and next steps with exercise

    This week I officially graduated from the Living Strong Living Well program (LSLW) – sponsored by Stanford University and the local YMCA (nothing to do with Lance Armstrong). I must say that the program has been a lifeline for me. It got me to the gym and strength training shortly after my lowest time. I did my first class on my birthday back in early February. Looking back at the data from the Fitlinx tracking system, I see that I was leg pressing 60 pounds back in February. I’m now pressing 150 pounds. If I had had to pay for the program I likely would not have gone, and for that reason alone I’m going to donate some money to support the program. It made a huge difference for me, and I want to pass along that difference to others.

    The LSLW program has helped me regain a lot of my strength, but towards the end I was ready for it to be over. In general, I hate exercising indoors. Going to the gym has been a means-to-an-end for me. I went to the gym to get stronger, so that I could do the things I want to do – like hiking and biking. At some point, however, the focus needs to change from getting stronger at the gym to doing more of the actual things I like doing. I am reminded about bike touring advice, and how no amount of training can replace time in the seat.

    And with that, my focus needs to change. I’m debating whether or not to continue my membership at the Y. I had originally planned on continuing, but I wonder how much I will actually use it? How much will I wish I was spending more time on the bike rather than in the gym?

    One thing the Y has that I wanted to try out is a belly dance class. I used to do belly dance, and I have always loved doing it – but that was before neuropathy and surgery. Last night I gave it a try. It was a little bit crazy, but also great to do. I definitely felt like I was working on some muscle groups that have not yet been worked on! I also felt a sense of familiarity with some movements and frustrations with others. I do think that it is something that I’d like to continue doing – mostly because it gets me stretching and strengthening in ways that is exceptionally good for my back and core. I need that. I am thankful that LSLW has helped me get back enough strength that I could successfully navigate the belly dance class.

    I have also been looking at the variety of free programs available to cancer survivors. I’m planning on attending a weekly strength and stretch class, in part because I know the instructor is awesome, but also because I feel like it is exactly what I need. I’ve thought about yoga, but I’m not strong enough to hold many poses for any length of time. Again I think of means-to-an-end. Is Yoga something I want to do because I enjoy it or because I feel like it is something that I need to do to feel stronger? Unfortunately, I think it fall more into the latter than the former. Belly dance, on the hand is something that I really enjoy doing.

    At this point I don’t know what my future exercise plans will be. Since my fall is looking crazy busy, I shall have to wait-and-see, but I definitely plan on staying active. I’ve gotten back in the pool and am swimming again – and starting to enjoy it too.

    To the fellow survivors who are reading this blog, what do you do to stay healthy/strong post treatment?

  • What’s a non-cancer reason for this?

    My new mantra is What is a non-cancer reason for this? I am actively trying to reprogram my lizard brain. Whenever I have a new symptom, or something doesn’t go as expected, I worry. I start to go down that path of OMG this is disease progression. But in order to stay sane, I’m trying to actively reprogram my brain. When it starts to go down that thought path of OMG this is disease progression, I actively ask the alternative question What is a non-cancer reason for this symptom?  I try to refocus my mind on the non-cancer reasons for the symptom. In many cases, this actually works … but not always. Sometimes I just go down that path and get myself all worked up about it …

    This week was one of those times. Sunday night I had a bit of fever. I woke up Monday morning to what felt like your garden variety bladder infection. I called and made an appointment with my primary care doctor (actually I saw someone else because she was out). I did the standard pee in a cup, and was diagnosed with a UTI (Urinary Tracked Infection). I was given antibiotics and sent on my way. No big deal.

    24-hours later, I get an email with test results. The doctor sense a cryptic message about how the results do not indicate a garden variety UTI, but to keep taking the antibiotics while we wait for the next round of tests to come back. The cultures will take another 24-hours or so. The message is vague enough that I start to worry. I foolishly look at Dr. Google. What does this mean? Any number of really bad things. I find myself searching for the answer to What is a non-cancer reason for this symptom? But I nothing pops up. Everything that I see looks really bad. I stop looking. I try not to worry, but part of me starts going down that path … OMG I have liver mets! (no I don’t, but that is what I was telling myself).

    I’m happy to report that it is nothing – well not nothing – it is ecoli – but that is really nothing. It is NOT CANCER … I had a perfectly treatable non-cancer reason for that symptom.  And so, one thing my doctors could have done to help me was to provide me with non-cancer reasons for this system. Next time, I’ll try to be more explicit in my inquires. I’ll ask directly them directly – what might be a non-cancer reason for this? So that I can focus on that. Because really, before cancer I never would have thought that every symptom I have would be cancer, so why should I focus on that now?

     

  • Fundraising time – Peak Hike for Prevention

    Please help me reach my goal of $1000 for this years Peak Hike by donating at: Becky’s Hike.
    Photo & Video Sharing by SmugMug

    The Peak Hike for Prevention has a special place in my heart. It represents a special transition in my well being. I am excited that I’ll be participating in this years’ Peak Hike, as it is the 20th anniversary of the event. The team that I am on, Em the Gem, has been hiking since the beginning.

    Photo & Video Sharing by SmugMug

    What makes the Peak Hike so special for me? Two things – it was the last long walk I did before the cumulative effects of chemo prevented me from doing much exercise, and it was where I met Kaki and the Honer Team. Kaki is now someone I’m happy to call a friend. She coordinated a ride to/from chemotherapy when I needed one. She came out and walked with me during my recovery from my big surgery. She also coordinated meals for us, provided so kindly by various members of the Honer Team. I’m looking forward to seeing many of the Honer Family again and saying thank-you in person.

    For the first hike, Kaki had some t-shirts made. She is modeling the original shirt here:
    Photo & Video Sharing by SmugMug

    Emily, Kaki’s sister, passed away not long before the first Peak Hike. The shirts were supposed to say “In Honor of Em the Gem”, but something when wrong in production. Ever since then, the team “Em the Gem” have been known as the “Honer Family”. I’m proud to be included as one of the members of the Honer Family. Here is a picture of last year’s Honer Family tree (I’ll have to get a better photo this year!):

    Photo & Video Sharing by SmugMug

    If you want to join us for this year’s hike, we’d love to have more members on our team. Our goal is to have 50 people signed up. The event itself is a fun hike with a great lunch provided by Whole Foods. Afterwards, our team tailgates for a bit.

    Please help me reach my goal of $1000 for this years Peak Hike by donating at: Becky’s Hike.

  • Message to my doctors: Do not tell me to lose weight

    We need to change this message. The entire concept of BMI is outdated, and yet, doctors are still using it to measure our well-being. It needs to stop.

    A message to my doctors, rather than making a remark about losing weight, perhaps you could enquire about my health? And then maybe, rather than comment on weight, you could provide tips that might actually help me get healthier, something like:

    • Eat a healthier diet … or even better, eat more salads / vegetables and less meat …
    • Do some strength training so you can be stronger …
    • Do some aerobic activity to help increase your endurance/cardiovascular health …

    Those are much better messages to send. They are concrete things that I can actually do!

    Telling me to lose weight only serves to make me feel bad about my body. It is also an improbable, if not impossible, task. If I knew how to lose weight, do you not think I’d already be doing it? It is even worse when that very same doctor is giving me medications that increase my appetite or take away the hormones in my system that help me to maintain a healthy body weight (but also help protect me from a recurrence of cancer).

    The reality is, BMI says that I’m overweight. It always has. It doesn’t matter how strong or how fit I am. I rode my bike across Canada and the damn BMI still said I was overweight.

    I’m getting stronger every day. My cardiovascular health is generally pretty darn good. I’m doing things that I could never imagine that I would do (like walking 32.5 miles in two days). If you to talk to me, you’d learn that I eat a healthy diet.

    Short of starving myself (which I’m not willing to do), there ain’t much I can do differently to cause weight loss. So please, stop telling me to lose weight. I’m getting stronger every day, that should be good enough.

  • What doesn’t kill you makes you stronger …

    I know that some people in my cancer-blogosphere (cancer bloggers that I follow) really hate the expression “what doesn’t kill you makes you stronger”. For so many people who are diagnosed with cancer it is the furthest thing from the truth. The treatments for cancer can do anything but make you stronger. And yet, this song speaks to me.

    What doesn’t kill you makes you stronger
    Stand a little taller
    Doesn’t mean I’m lonely when I’m alone
    What doesn’t kill you makes a fighter
    Footsteps even lighter
    Doesn’t mean I’m over cause you’re gone

    What doesn’t kill you makes you stronger, stronger
    Just me, myself and I
    What doesn’t kill you makes you stronger
    Stand a little taller
    Doesn’t mean I’m lonely when I’m alone

    The song itself talks about breaking up from a bad relationship. In some ways, I can visualize my breasts and the cancer that grew in them as that bad relationship. When I do that, then the lyrics really do speak to me. In addition, it has a really strong beat, so that it works really well as a workout song. It makes it easier for me to push myself when I’m trying to get some exercise.

    If I look back on where I was when I was diagnosed, and compare to where I am now, in many ways I am stronger. I was strong and felt healthy when I was diagnosed, but now I am stronger. Before, I would never have considered hiking more than 4 miles (6 km). Now, I know that I can hike more than 10 miles in a day. I’m not quite back up to riding the distances I did pre-chemo, but I’m pretty close. I am stronger!

    Am I better? I wouldn’t say that. I am still dealing with a lot of pain – mostly pain in my feet because of the neuropathy, which waxes and wanes (been waxing more than waning lately). It means that although I can walk 10 miles, I don’t do so without pain. It is a struggle, but I can do it, and it is something that I didn’t think I’d ever be able to do.

    One of the challenges I’m struggling with is the fear of getting stronger. I’m also afraid to lose weight. I’m afraid to feel well. I’m afraid that getting stronger, losing weight, and feeling well will be a signal that the cancer is back, because they were the things that happened just before my diagnosis. I lost about 20 pounds in the span of three weeks, and I was doing regular 50km bike rides, so I felt strong. Then I was diagnosed with cancer – turns out the sudden weight loss was not because of my exercise regime but rather the cancer. I need to learn to fight the fear head on. It needs to be OK for me to feel better. It needs to be OK for me to lose some weight. It needs to be OK for me to be stronger. It is no different than the superstitions that stopped me from saying I am cancer free.

    And so, with that, I’ve added the Kelly Clarkson song to my exercise play list, cause what doesn’t kill me makes me stronger is a pretty good motto for me right now. It works for me, so I’m going to own it!

  • This is my fight song …

    As we walked through the streets of San Francisco and into Marin County we heard this song over and over again. It isn’t actually an anthem for cancer, rather one for mental health – but it feels so appropriate. Mental health and breast cancer are somewhat inter-linked – in that breast cancer and its treatments certain put a strain on your mental health.  So, I bought the song and loaded it onto my iPod shuffle (the one I use for exercise). I’m looking for suggestions for other new songs that might be appropriate for working out. It is time that I retired some of my older music (Bon Jovi, Bryan Adams, and Alanis Morrissette).

    This week Rebecca challenged cancer bloggers to share more positive stories. Personally, I try to share both – the good and the bad. But she is right. It is often much easier to find the words when you are writing about the challenges – expect for the words “I am cancer free“. For me, those were challenging words.

    One of the things I’ve been struggling with is headaches. I’ve mentioned before that I hoped that the CPAP machine would be my panacea. It hasn’t been long enough to know if that is the case. I’m still hoping, but also dealing with jet lag after my trip to Ontario last week.

    At my last oncologist appointment, he suggested that I could take a month off of tamoxifen. He said this after telling me ‘I am a cancer doctor, not a headache doctor’ (said in a jestfull tone). At the mention of going off of tamoxifen, I cried. It is hard to contemplate the idea that I should stop taking the thing that might just be stopping the cancer from progressing. It is a scary thought. After much consideration, I did decide to stop. I figured that if I was going to a conference for three days, and there was a slight chance that the tamoxifen was causing the headaches, that was as good a time as any to go off. I started taking tamoxifen on my birthday – back in early February. I was still recovering from my major surgery. As a result, it was difficult to tell what was a side effect of tamoxifen and what was my body healing. I recall writing about a fog lifting.

    Two days after I stopped taking tamoxifen, I felt a fog lift. I felt that for the first time in a long time I could actually concentrate on things in the afternoon. Previously, I managed to do most of my ‘work’ in the morning. My afternoons were mostly spend running errands or exercising. This was, in part, because I couldn’t think straight in the afternoons. I had bad headaches but also a fog that slowed my ability to think.

    So, where does that leave me? That is a good question. In the next couple of weeks I’ll be doing a few blood tests (we need to see if my body is in menopause or not). From there, a new treatment plan will be hatched. I’ll meet with my oncologist again, and decide what medications I’ll take. Tamoxifen isn’t the only option. There are other choices – some of which are more effective against the cancer, but come with a different set of side effects. I’ve decided to not worry about it for now. For now, I’m going to enjoy my tamoxifen vacation – and try to feel healthy and strong again. And with that, I’m off to the gym so that I can listen to My Fight Song while sweating and working out some of the stress in me!

  • There is harm in giving false numbers

    This week, Ann did the footwork (thank you) and posted about a false statistics that has been made very popular within the breast cancer blogosphere. I must confess, that I am guilty of using this false statistic. But worse, this false statistic has caused me great amount of unnecessary stress and emotional harm.

    What is this statistics? It is the “30% of early stage breast cancers go on to metastasize at some point”. I’ve seen many different articles that talk about how “early detection” doesn’t necessarily save lives, because we do not know what is causing metastasis, and some people who do everything right still get metastatic disease. However, saying that this will be true for 30% of us is just plane scary. It adds to the fear mongering that is all too present in our culture today.

    One of the biggest challenges of being a part of the blogging community is that of critically assessing anything that is posted on blogs. It is something that I often do, but for this one statistic, I did not. I found it ever pervasive, and thought that someone must have come up with that number some how. It is also too easy of a statistic to use. It is useful when trying to make a point. But, it also does a lot of harm – and that harm is mostly to those of us who have undergone treatment for early stage disease and are trying to get on with our lives. We don’t need that extra fear of 30%, especially when the number might actually be much lower for a given person.

    If there is no national register for metastatic disease, and no data on how many people progress to metastatic breast cancer, then how the heck could one even come to that number in the first place? There would be no way to know that information.

    So, now I need to reprogram my brain. I need to remind myself that the number is a false one. My chances of survival are much greater than 70% (or truly, since I had three primary tumors – .7*.7*.7 = 34% – yikes). The reality is that I did catch it early, and I did treat it aggressively. I have no idea what my prognosis is, but my care team are certainly not treating it like 34% …

    This got me looking. According to the Komen website, someone in my age rage with ER+ breast cancer has a 94% survival rate. Since I had three cancers, one might wish to multiply this so (.94*.94*.94 = 86%) – which is a far cry from the false statistic above.

    The other challenge with the current statistics is that there have been significant advances in the treatment of HER2+ breast cancer (not the kind I have). So, women with HER2+ cancers who would have had a significantly poorer prognosis 10 years ago are expected to live cancer free for a lot longer. In this case not enough time has passed – not enough people who had HER2+ cancer, and received the targeted therapies, have died of natural causes yet – they are still alive. So the whole statistic in this area is hugely unknown.

    As a survivor, the only statistic that really matters is 1 – that is, it really doesn’t matter what the numbers fall out to be because you already drew the unlucky straw, and as my oncologist is want to say “it is what it is”. However, propagating a false statistic in order to try to encourage people to donate more money to research (or funnel more money into metastatic research), does not serve our community well. It only causes to feed the flames of fear of recurrence and progress – flames that most of us do not need fed. We’ve been fighting the fire long enough, we need to put it out and move on with our lives.

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