BC Becky

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

Year: 2015

  • For 2016 I seek balance

    As I write this I’m reflecting with some sadness. There have been several people within the blogosphere that have passed away this holiday season. I just read that the first person who I met with metastatic breast cancer (I met her at a young women’s breast cancer support group meeting) has passed away. It is always sad to hear of these passing, but especially sad when it is someone you have met, even if it was just that one time. Her spark for life touched me at a time when I was still pretty new to the whole breast cancer thing – I think I met her when I was on my second or third round of AC chemo. I do recall that her checkin made me cry uncontrollably that evening. So, there is sadness in my thoughts this evening.

    Over the last few weeks, I’ve been reflecting on 2015 as it comes to an end. I’ve been reflecting on what my goals might be for the year to come. I don’t want to have specific goals – because I’m a bit afraid of not being able to live up to them – rather I want to set goals that are achievable.

    So, for 2016, the biggest thing I want to figure out is balance. How to find an effective balance in my daily time demands. How to balance the amount of work I’m doing, the research I’m doing, with the time I need for self care, exercise, doctors appointments, and grocery shopping.

    Just yesterday I demonstrated how the simple task of grocery shopping can turn from a 30-minute activity to a two or more hour activity – as we couldn’t get what we needed at one store and needed go to two others in order to get everything. So went the afternoon.

    The other goal I have for the new year is to get back on the bike. I pretty much stopped biking when I got lymphedema, largely because I also had a fair bit of shoulder pain. Biking made things worse. Plus, I am spending a lot of time at the gym, 45-minutes of cardio, a little weight training, and a 40-minute swim. Add in the 30-minute drive to and from the gym, and it becomes a four hour task that I undertake three times per week. Since my priorities have been hiking and the gym, biking has fallen to the way side. So in the new year, I will need to get back on the bike.

    The other aspect of balance is around my mental and physical health. I want to maintain a balance of being proactive but avoiding being reactive. I don’t want every pain to signal something that I need to fix. Perhaps it is a balance of allowing myself to live with a little pain as a reminder that my body is not perfect, and that is OK. Either way, I need the little pains to not be triggers for big worries. Perhaps I need to learn to leave the worrying to my doctors (amazing how well it works to just decide to let someone else worry for me). If I trust my doctors, and let them worry about detecting recurrence, I can just get on with living my life.

    And so, with that, I shall look into the new year with hope of finding some kind of balance in my life, whatever that might mean …

  • On being selfish

    This morning, as I read Beth’s blog post about Mindfulness, Uncertainty, and Courage – I was struck by this particular quote:

    I’ve got to ignore my inner voices that tell me I’m selfish for thinking of myself so much.

    It made me a little angry. Why is it that in our society when a women tries to take care of herself, it is deemed as a selfish act? For some reason, when men take care of themselves it is seen simply as self-care, and a good thing. And yet when women do it, we are being ‘selfish’… ugh …

    The funny thing is that selfishness has been a bit of a theme in my writing these last couple of days. In my other blog, I wrote ask Is my research selfish? In short, my answer was yes. I think that all research is in some ways selfish. It is a privilege to be able to do research and to study things that are of great interest to you. And yet in that context, being selfish is OK. Actually, in the context of PhD studies it is encouraged and I would argue necessary. If you do not have a selfish passion for the topic of your study, you will have a difficult time completing it successfully.

    This whole discussion on selfishness reminds me of advice that I often given those newly diagnosed, especially those who have children at home. I give them permission to be selfish. It is something that they often need to hear, in order to allow themselves the ability to care for themselves during treatment. But why does self-care have to come with such a stigmatized label that is called selfishness?

     

  • Balance and counter-balance

    I’ve been reflecting lately about how I’m no longer afraid of cancer recurrence. It is no longer something that I worry about. It isn’t the first thing that comes to my mind with every ache and pain.

    This is one of those good-thing bad-thing things. You see, since I am no longer worried about cancer recurrence, I question the need to be on hormone therapy. I can totally appreciate why there are issues with women complying with hormone therapy.  I question the need to continue with treatments that might make me feel sucky. It is a lot easier to put up with the treatments when you think of them as a safety net. When you consider that they are what will help prevent recurrence.

    So, a little worry kind of needs to be there. That little worry needs to be just enough to motivate me to continue down the path of hormone therapy. Without that little worry, the treatments feel like torture for no benefit.

    And so, I feel the need for a little balance and counter-balance. I need to feel like the hormone therapy is doing something. Fortunately, I will know that one aspect of it will be doing something – that is, the once every 6-month Denosumab shots – because they will be treating my osteopenia (low bone density). Between the gluten-free diet, additional calcium supplements, and the denosumab shots, my bone density should return to normal (crossing fingers).

  • An unexpected trip to Vegas #celiac

    We had not planned on spending a day and night in Las Vegas – but we ended up there. The alternator in our rental RV decided it didn’t want to work anymore. We managed to get to Pahrump Navada to get the problem diagnosed (a warning light went on just as we were leaving Death Valley). Fortunately, I had the foresight to suggest that we get it fixed in Las Vegas, that way we could make the most of our unexpected detour and spend the day exploring Vegas. I later learned that the thing Pahrump is most famous for is legalized prostitution. So I was very glad that we didn’t spend any more time there then we needed to!

    One of the challenges with being without the RV is that I’m not yet that good at figuring out how to eat out Gluten-free. I really didn’t want to get sick! Fortunately, a quick Google Search gave me the link to Gluten Free Las Vegas – a great website with a list of recommended restaurants. I even got to eat at a couple of restaurants who’s owners were on Top Chef Masters (Spago by Wolfgang Puck & Border Grill). The foodie in me was a little underwhelmed by our meals. We found them to generally be overpriced and mediocre. However, I’m very happy to report that I did not get sick. In each of our three meals (buffet lunch, nice dinner, and then nice lunch the next day), we ate way too much. We both were glad to hear the that the RV was fixed, so that we could get back on the road.

     

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  • Treatment update

    I mentioned in a previous post that in the new year I’ll be starting a new treatment to help reduce the risk of breast cancer recurrence. Since then, hubby has found for me a link to the studies that were presented at the clinical cancer conference in San Antonio. Thanks go to Anne at Chemobrain Fog for posting links to the presentations. I’m going to post two of the video clips below.

    It will be interesting to see what my insurance says about the denosumab. They made me do the injections of Nulasta (at $5000 per shot, I’m amazed that they trusted me to do them myself). Denosumab is similar in that it is a subcutaneous injection. We shall see. Given that I have low bone density (osteopenia), my insurance should cover the injection.

    And so, in the new year I will begin a new breast cancer treatment regime that will also help to address issues with bone loss (which in part could have been caused by undiagnosed celiac disease). What I don’t know is when do I get a follow up bone density scan to see if it is working? Likely not for 6 months or a year – maybe even longer.

    Crossing my fingers that I tolerate the new Aromatise Inhibitor and denosumab well. It means that treatment to reduce recurrence includes Lupron once every 3 months, Denosumab once every 6-months, and a daily Aromatise Inhibitor pill. These are part of my “wellness” treatments!

  • A visit to the pain doctor

    Yesterday, I saw a pain specialist. This was in part due to some ongoing pain in my left breast – right where my tumor used to be. I’ve had the problem pretty much all year. I recall my plastic surgeon days “It’s just a stitch“. I also have back pain and pain associated with chemotherapy induced peripheral neuropathy. I was glad to be able to talk about all my pain issues.

    I had two important take aways from the visit. First was the term “pill fatigue”. The idea here is when you need to take too much pills. I find this with gabapentin. I can manage it twice a day but three times a day is just too much for me to manage. Fortunately, he happen to mention a different gabapentin – one that is time released and only need to take once per day. I say immediately yes! He did warn me that it is not on all formularies – a term I’m learning which means not all insurance companies will pay for it. Given that the three pills three times a day is a valid treatment option – however, it doesn’t account for “pill fatigue”.

    The other important take away – and the one that made me cry because it hit close to home – is the association of pills and illness. Every morning and evening I’m reminded of my various ailments because of all the pills I’m taking. The doctor suggested that I find a way to move beyond that and accept that taking pills is part of wellness. The idea really struck a cord. So, I am going to try to reprogram my brain. I’m going to try to see my morning and evening pills as wellness pills rather than illness pills. I take the pills so that I stay well.

    More important than any pills he can give me to manage the pain – we talked about a new drug but it will need to be coordinated by my psychiatrist and oncologist (I really got a sense of my various doctors working together on my care) – but more important than that is that I left the appointment with a new attitude, and I think that will help more than anything else.

  • A year ago today …

    A year ago today, I woke up very early. No breakfast and no coffee, we headed to the hospital. All the waiting was over. Decisions had been made. I was as ready as I was ever going to be.

    For me, the surgery itself was the easy part. I went in, got prepped, they put me to sleep and that was all there was to it. It was the journey back that perhaps the biggest challenge of my life.

    So, today, I look back with tears in my eyes. I’m flooded with emotions that I just cannot describe. It isn’t happiness. It isn’t sadness. It isn’t relief, or celebration. It is just an overwhelming sense of emotion. I find myself thinking that maybe this is just a nightmare, and one day I’ll wake up and it didn’t really happen. Perhaps this emotion is more a sense of mourning. Mourning the loss of innocence. Mourning the loss of expectations of good health – something that I never realized I had until I heard the words “you have breast cancer”. Even after hearing those words, I still had an expectation of good health. I still had the sense that I’m strong, I can do this. I truly had no idea just how far down breast cancer treatments would take me.

    This is my one year cancer free day. It is the day the last bits of breast cancer were removed from my body. It is amazing how far I’ve come. Looking back, I posted on December 23 about being home and walking around our courtyard. In March, despite having open wounds in my stomach, I rode my bike up Mount Hamilton. In July not only did I do two 10-mile hikes back-to-back, I also walked 32.5 miles in two days), and yet I feel like I still have a long way to go before I’m healthy again. With each day, I get stronger …

  • A little bummed out …

    I came back from my last oncologist appointment (Monday) feeling a little down. The visit was good. We made a solid plan of action that addresses both breast cancer prevention (hormone therapy) and treatment for osteopenia (low bone density). I was fine until I asked the question “so how long would I need to be on the hormone therapy?” … the answer I got back was “for you, 10 years”. So I’m bummed. I had hoped with the switch aromatase inhibitors that it would drop down to 5 years.

    The good news is that the latest research (of about two weeks ago) is showing that Aromatase Inhibitors (AI) plus denosumab once every six months decreases the risk of hormone positive breast cancer recurrence. Upon hearing this, I tried to look it up. I didn’t find anything. However, I decided early on that I trust my oncologist. He is the expert. He is the one going to the academic and clinical practice conferences. And so, I now have a plan. I’m still taking Lupron once every three months to ensure that my ovaries are not producing estrogen, then in the new year (actually February) I’ll begin taking an aromatase inhibitor which stops my body from converting androgen to estrogen, reducing the amount of estrogen in my body even further. It looks like Breastcancer.org have recently updated their page on aromatase inhibitors as it now references a 2015 study. I’ll add in the denosumab once I’m stable on the AIs and once my foot has finished healing (In January I’m having a minor surgery to clean the arthritis and bone spur on my toe).

    I’ll be adding one thing at a time, so that I can figure out which has side effects for what. I’m encouraged that the AI is said to have less side effects then tamoxifen. I have very few / minor side effects with the Lupron. I’m just hoping I don’t end up with crazy headaches like I did on tamoxifen. That was not fun and truly began to drive me crazy.

    I try to look on the bright side. I try to think that this is my ‘protection’. I feel a twinge of guilt because I have something that provides that protection and yet I really don’t want to have to take it – unlike a friend who has triple negative breast cancer and was recently diagnosed with metastatic breast cancer – at least I have something that might provide some protection. However, I also think it totally sucks to have to be on medication for 10 years. It sucks to be thrust into enforced menopause before my time. It has me kind of bummed out …

  • How to feed a loved one … #celiac

    Your friends or family invite you over for a holiday meal. They want to feed you. They mean well. However, as someone with celiac disease, this can be very difficult to navigate. I don’t want to offend my friends, but I also do not want to get sick.  So I asked the celiac Facebook group for some tips to help friends and loved ones cook meals that are safe for those with celiac disease. If you have any other tips and tricks, please leave a comment.

    First I want to highlight that celiac is not an allergy. Exposure to as little as 1/8 or 1/64 of a teaspoon of flour can make us sick. We don’t all get sick immediately. Sometimes it will take a day or two before the onset of symptoms. Then we need to mentally go back over the last few days and figure out what food made us sick, so that we don’t accidentally expose ourselves again.

    Here are some tips and tricks for preparing meals that are safe for those with celiac.

    General tips

    Gluten is in anything that contains wheat, rye, or barley. Other grains that contain gluten include triticale and spelt. Malt also contains gluten. You must read the labels of everything you include in what you cook, looking out for any ingredient derived from wheat, rye, or barley.

    The following items must be certified gluten free. If they are not, the risk of them containing hidden gluten it too high, such that they are likely to make someone with celiac sick:

    • Oats (e.g. oatmeal)
    • Soya sauce
    • Malt (it is a barley derivative, e.g. malt vinegar)
    • Soup bases (e.g. bullion cubes, canned broth, etc)
    • Salad dressings (easiest thing to do is get plain olive oil and balsamic or red-wine vinegar)
    • Spice / seasoning blends (pure herbs and spices are OK, but blends often have gluten containing fillers that are not necessarily labelled)
    • Pasta sauces (pre-made mixes often contain gluten as thickening agent)
    • Deli meats (anything cut to order in the deli can be cross contaminated)
    • Anything fried in the same oil as gluten containing ingredients (e.g. french fries that are fried in the same oil as onion rings)
    • Any food purchased in bulk. Unfortunately bulk bins risk cross contamination, regardless of what the food is. They are not controlled. All it takes is someone using the same gloves to refill the wheat flour and then refilling anything else.

    Avoid cross contamination. If you are cooking in a kitchen that is also handling gluten containing ingredients, you need to be diligent to avoid cross contamination. An 1/8 or 1/64 of a teaspoon is only a crumb or two. Some tips to avoid cross contamination:

    • Don’t use wooden spoons or wooden cutting boards. They can contain gluten in the cracks and cannot be adequately cleaned.
    • Use clean knives, serving spoons, and utensils when handling gluten free foods.
    • Line your pans with aluminum foil or parchment paper. This helps to prevent cross-contamination if the pans are not absolutely cleaned.
    • Put out a separate butter dish for your gluten-free guest that is not shared.
    • Put aside an un-sauced piece of protein for your GF guest. You can buy GF gravy mixes at the grocery store, which can be made up in a clean pan for your GF guest.

    Keep it simple. The simpler the meals is (that is the less ingredients), the more likely it is to be safe. Put sauces on the side rather than directly in the meal.

    Snack ideas

    • Plain popcorn
    • Potato chips that are certified GF (unfortunately most potato chips contain gluten)
    • Kind bars (they make a variety of different types of bars that are all GF)
    • Cheese and crackers
    • Certified GF nutbars

    Breakfast ideas

    Be aware that many people will celiac need a high protein diet to help their stomachs heal. This is especially the case after gluten exposure. Fresh fruit and cereal alone often do not provide enough protein.

    • Hard-boiled eggs (if your guests are staying with you, put a few hard boiled eggs in the fridge for them. They make great high protein snacks).
    • Certified gluten free oatmeal packets
    • Certified gluten free breakfast cereal (avoid Cheerios as they are not adequately tested at this time)
    • Cheese & GF crackers (note that seed-based and sweet-potato-based crackers are so much better tasting than the cardboard GF crackers that try to replicate table crackers).
    • GF nuts (note that nuts should certified GF)
    • Fresh fruit

    Lunch ideas

    I’m still challenged with lunch. Sandwiches are a challenge because any deli meats that are not prepackaged and labelled as gluten-free are not safe. Gluten-free bread alternatives are often pretty awful.

    • GF soup (must be certified GF or made with certified GF ingredients – note that stock made from a gluten stuffed chicken/turkey is not GF)
    • Bean salad over a bed of lettuce
    • Cheese and crackers
    • Fresh fruit

    Dinner ideas

    Most meals can be made gluten free. If this isn’t an option, then purchasing a few gluten-free frozen dinners is always an option (e.g. if you are making lasagna, then buy a frozen GF lasagna for your celiac guest).

    • GF pasta – make sure you follow the instructions on the packaging. GF pasta is good when cooked exactly as instructed. If overcooked it disintegrates).
    • Potatoes, rice, and quinoa are gluten-free
    • Plain meat and veggies are GF
    • Put aside an un-sauced piece of protein for your GF guest. You can buy GF gravy mixes at the grocery store, which can be made up in a clean pan for your GF guest.

    Dessert ideas

    Note that if you make GF desserts and then put them on a buffet style table with non-GF desserts, the likelihood of cross-contamination it huge. People do not understand that they cannot use the same serving utensil on both desserts. It is better to set aside an assortment of the GF desserts before placing them on a shared buffet table.

    • Look for packaged GF desserts in the grocery store. I particularly like macaroons.
    • Whole Foods makes GF Christmas cookies in a dedicated GF facility and packages them in plastic so they are not cross-contaminated. These make great GF desserts.
    • Macaroons
    • Flourless chocolate cake
    • Mixed fruit (although truth be told, we get mixed fruit at every event we attend so if you want to do something special, look for a GF bakery) – note that items made in a non-dedicated GF facility are not typically considered safe. Items that are made in a GF facility and sold in bulk are also not safe unless they are packaged in a manner that prevents cross-contamination.

    That’s all I can think of for now. If you have any good tips, please leave a comment.

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