BC Becky

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

Category: Navigating the new me

  • I’m doing OK

    Life has been a little crazy lately. I cannot believe that I’ll be headed back to Canada next week for a brief visit with family, but also to run a few errands (visas, passports, textbooks).

    This will be my first flight after the lymphedema diagnosis. In some ways, I’m nervous about it. I’ve flown quite a few times after surgery without a problem, but I didn’t have lymphedema then. I do now. So now I have to take precautions. I need to wear sleeves (which thankfully, I now have several pairs of) whenever I fly. I wear sleeve on my left arm anytime I’m awake anyways. But for the purpose of flying, I also need to wear a sleeve on the right. I also need to be more careful about lifting bags.

    Mentally, I’m doing well most of the time, but every now and thing, something tweeks. This time, it is a consistent pain in my left chest. The pain is in the same spot as my primary tumor, so it triggers those memories. I’ve brought it up to my doctors many different times. They all confirm that it is NOT cancer. I am doing OK. However, the pain continues. This time, the PA (my surgeons physician assistant) has referred me to the pain clinic – they are calling it “post surgical pain”. I can handle that. It has been almost a year since the major surgery, so the pain should have settles by now. So, I’m crossing my fingers hoping that the pain folks can get to the bottom of this issue.

    When I’m tired, the pain triggers an emotional response. My mind then starts to catastrophize. I start thinking that I’m having a recurrence. That that cancer is back and in my bones or that I have a large lymph node that is cutting off the circulation in my arm. My mind starts down that path, and when I’m tired I don’t catch what is happening. When I’m not tired, I can usually see the thought path and intercept it. I can see that what my mind is doing and stop it, tell it that there is likely a non-cancer reason for the pain. I trust my doctors. It is in their best interest to keep me safe and healthy – it doesn’t make sense that they would ignore an important symptom – and so I must remember to trust them.

    The biggest challenge with this episodes is the amount of time and energy it takes. I feel the need to be diligent, but that means making doctors appointments and seeing doctors. It means intentionally prioritizing exercise, and having that cut into the productive hours I have for work. It is difficult finding the post treatment balance.

    And so, with a better night’s sleep – I’m doing OK. I’m dealing with various aches and pains in my body and not assuming that every one of them is cancer. I’m working really hard to move on. To get back to my academic work, and to do more teaching. I’m exploring opportunities as they present themselves.

  • At this time last year …

    At this time last year I was preparing for my first surgery. I wasn’t really scared anymore. I was ready – or at least that is what I remember of it all. I remember being scared early on, but not being scared on the day of. I remember giving myself permission to go into surgery kicking and screaming, and really only crying a little as they placed the third wire in – a rather painful process where the mammogram machine is used to squeeze your breast while they place wires into your breast to show the surgeons were the tumor are. You leave radiology with wires sticking out of you (like foot long wires protruding from your breast(s).

    A year ago tomorrow, I had my first breast cancer surgery. I don’t mark that date as my cancer free date because they didn’t actually remove the last of my cancer that day. They only got the first two tumors – the third was a small one that was not properly marked, so the wire wasn’t in the right place. It didn’t matter much, as the plan had always been for a double mastectomy, which would be done December 17th. This surgery was to test my sentinel nodes, do a devascularization of the nipple and areola, and biopsy the cells under the nipple.

    I remember waking up and my first question to my husband was “are my nodes clear?” – referring to whether or not they found cancer in my sentinel lymph nodes. Apparently I asked that question about 8 times as I was waking up from the surgery. Fortunately the nodes were clear, as were the cells under my nipples. This meant I was good to go for the nipple sparing double mastectomy with immediate DIEP flap reconstruction on December 17th (yup, that surgery is a mouth full to say, and was a long one to both do and to recover from).

    And so today, I look back on that time. I think about what I would tell myself – with the benefit of hind sight. I’d tell myself (1) drink more water, (2) finish your coffee a littler earlier cause they will take it away from you, (3) don’t bother with the pre-procedure nerve block as it was likely more painful than the pain it was blocking, (4) let Scott have one last grope of the girls, and (5) you’ll be OK, when it is all said and done you can order room service from your hospital room!

     

  • Thank you University of Chicago Medicine (@CureCeliac)

    The kind folks at University of Chicago Medicine Celiac Disease Center have a program where they send out care packages to those of us who are recently diagnosed with celiac disease (requires formal diagnosis either with biopsy or via current protocols). The Gluten Free Care Package contains some food samples, a bunch of coupons, and some educational materials. Of particular interest to me is the documentary they included – I’m looking forward to finding a few spare minutes to watch it – The Celiac Project – For those who do not qualify for the free kit, it looks like you can get a pretty nice package with the video and home viewing kit for $24.95 here.

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    Another resource that was mentioned in the Care Package letter was a free eBook titled “Jump Start Your Gluten-Free Diet“. The resource is kind of buried on the Cure Celiac Disease website, such that I had not seen it before. Honestly, the title didn’t inspire me to read it, but looking at it, it is so much more than a book about gluten-free diet. It talks about what celiac disease is, about how it is diagnosed,  about what follow-up treatment you need if you have celiac disease, as well as the tips for finding hidden sources of gluten, how to grocery shop, and how to eat out. It is pretty much the best owners manual I’ve seen for someone with Celiac Disease – and it is FREE. So, if you or a loved one has celiac disease, take a look at this book – don’t let the title fool you – “Jump Start Your Gluten-Free Diet“.

    The other thing I did, on a whim, was sign up for three months of the Gluten Free Box deliveries from Love With Food. Someone from one of the online support groups I’m a part of recommended it – and showed a picture of her box. It looked pretty cool. I thought I’d enjoy getting a package in the mail once a month – plus it gives me a chance to try out different brands of gluten free products that I otherwise may not have thought to try. I’ll share more with you once I get my first package. Note, the link from my page should get you a bonus 40% the first month if you choose to purchase a box.

     

  • Learned helplessness

    In education, there is a theory that talks about “learned helplessness” (actually it is behaviorist psychology).

    Learned helplessness occurs when an animal is repeatedly subjected to an aversive stimulus that it cannot escape. Eventually, the animal will stop trying to avoid the stimulus and behave as if it is utterly helpless to change the situation. Even when opportunities to escape are presented, this learned helplessness will prevent any action. ~ Kendra Cherry

    Although this idea is presented as something that happens with animal behavior, it also happens in humans – and especially in patients. I find it in myself at times. I complain about an persistent ache or pain (interesting choice of words – complain rather than report – it is in part how I am made to feel when my aches and pains are dismissed). My doctors don’t know what to do about it, so they ignore it. Somehow, this translates in my mind to it being something that cannot be fixed – something that I need to just suffer through. After reporting the pain to many different doctors, I exhibit learned helplessness. I feel like there is nothing that can be done, so I stop trying. I stop reporting the the aches and pains. They don’t go away, I just stop telling the doctors about it – because I’ve learned that they cannot do anything about it. I’ve learned helplessness.

  • Researching my illnesses

    At one point in time, I stopped researching my illness. I didn’t start researching about breast cancer. In the early days, I couldn’t research. I couldn’t mentally process the papers, but I also wasn’t willing to filter through it all. And I certainly didn’t want to hear all the bad stuff.

    Then at some point I started with reaching to research to help me analyze treatment choices. I started filtering through the literature to help answer questions I had.

    These last few weeks I’ve been hit by too many new things, that I just haven’t been able to keep up. I haven’t had the time to even begin processing the literature – but I need to start figuring at least some of it out. I need to get a better sense of what it means to have lymphedema, celiac disease, and a little bit of hypertension too. Ugg. Never mind the bit about having undergone treatment for breast cancer, and still facing hormone therapy to help prevent the breast cancer from returning.

    That being said, I’m in a little bit of a moment of quiet reflection. I’m getting stronger every day, and I’m reminding myself of that. I’m getting to the point where I can start thinking about doing things again. I’m working more again. I’m preparing to go back to my PhD studies in January. I’m even pushing myself to think about bucket list trips that our in the future …

    Today I attended the Bay Area Cancer Connections annual conference. I attended as an exhibitor, on behalf of another support group that I attend – Bay Area Young Survivors (BAYS) – this is the group that I wrote the book chapter for. I was not so successful at selling books, but I was success at telling a bunch of people about the group – which really, was my primary purpose for being there. I even made a couple of new connections.

    I reflect back on last year’s conference, and how I was in such a different place last year. The conference was a little earlier in the year, such that I was still on chemo. I learned a lot at the conference, but there was also a lot to process. I remember leaving feeling heavy with thoughts. This year I thought the presentations were better. They were more informative, but also with a mind to things that everyone cared about – rather than things that only applied to a subset of the audience. I think they did a better job of designing the conference content.

    I also chose to leave early this year. It was nice outside, and I wanted to spend some time while it was still daylight enjoying the outside. I also didn’t feel the need to hang around. The last scheduled session had a presentation on lymphedema that I think might have been interesting. The problem is, that there is so much mis-information out there. So little is known, and so much is shrouded in myths about what to do, that it is difficult to separate out the good information from the bad. The doctor I see is one of the world specialists in lymphedema. I trust what he has to say. I do, however, need to do some more of my own research in the area – just so that I know and understand my own illness better. But until I get around to it, I am taking my own advice – I’m deciding who I trust (in this case, my lymphedema doctor) and trusting that he is guiding me appropriately. I’m lucky to have access to such a specialist, and to be able to delegate the treatment of my illness to someone who is an expert at it. However, I’m also reminded that I am still the expert at my body … so I cannot delegate too much.

    And so, with that, I have some reading to do …

  • My Bucket List

    I recently completed an application that asked me what is one thing that I’ve wanted to do (bucket list item) that I haven’t done yet, and why haven’t I done it?

    The one thing on my bucket list is to visit the Galapagos. Now that we live in California, we are a little closer (but not really). I found myself wondering why haven’t I done it?

    There are three reasons: (1) time, (2) health, and (3) cost.

    I seem to find myself getting busier and busier. This is a good thing. It means that my health is improving. With improved health, I’m taking on more things. I’m teaching, I’m going back to school, and I may even be doing a little contract work. This is good.

    I can no longer use health as an excuse. As time goes by, I’m getting stronger. Sure I have new health issues that throw a wrench into things, but I am also getting healthier and I’m learning to deal with the issues that I have. I need to stop using this as an excuse.

    Finally, cost. This is something we can definitely manage. Especially now that I’m doing more work. I’m now contributing to our household income (although not in huge amounts, still it isn’t nothing).

    One thing that I can do that helps address these barriers is to plan a special bucket list trip. Since I know that I’m not the only one who wants to go to the Galapagos, if I can get a group of 12 or so people together, we can create a tailored trip. One that does the things we want, but is also less expensive than going on a pre-arranged tour.

    The other complexity of a pre-arranged tour is food. I now need to know that food included in the tour can be strict gluten free – no point in going on a bucket list trip and spending the entire time feeling crappy because the food is making me sick. This is actually one of my biggest stress issues when I do anything that I am not organizing myself.

    My ideal trip would involve snorkelling every morning and hiking most afternoons – although I would be OK with switching it up and hiking in the morning and snorkelling in the afternoon. Either way, I would love to spend my days doing mostly those two activities, with perhaps the occasional afternoon kayaking or standup paddle boarding (not sure how well I can do either of those activities, but I’m open to giving them a try).

    And so with that, I will start to plan my Galapagos bucket list trip. If you are seriously interested in joining, please email me. The cost would be something like airfare plus $2000-$4000 per person – I’m judging that based upon the cost of other tours. We would be looking at a customize trip, for about 12 people (allows us to book the entire boat). I’m thinking a week, probably in November 2016.

     

  • Celiac … it’s a real thing

    I recently asked an online celiac support group what messages they would like to send to an audience of healthcare professionals. I was really surprised at one of the answers.

    People wanted a formal letter from their doctor to their family members explaining that celiac was a real thing, and that gluten cross contamination was a real problem. This is in part because I asked the question just before a major US holiday (Thanksgiving). There are a lot of people out there with celiac disease, who get really sick when they eat food that has been contaminated with even the smallest amount of gluten. I find it really sad when family members need a doctors note in order to believe the severity of the issue.

    Thanksgiving is a difficult holiday for those with celiac. It is also known as “turkey day” as turkey is the traditional meal. Unfortunately, turkey is usually prepared with stuffing that is made from bread. If the turkey is stuffed with bread, then there is no way to avoid cross contamination. Another problem is that many turkeys are injected with things like chicken stock to make them more flavorful and moist. Again, these injections can contain gluten, causing the entire bird to be cross contaminated. Thankgiving is a social time, a family time, but also a really stressful time for those with celiac who end up being unable to join in the feast – especially when family members don’t appreciate that this isn’t a dietary fad, it is a real disease with real long term impacts.

    I am also sad that there is very little information on celiac disease provided by healthcare providers. There is no one specialist that treats the disease – rather you have a smattering of specialists based upon the different manifestations of the disease – but typically you see a GI specialist for the gut manifestation and a dermatologist for the skin manifestation. That is, if you live someplace where you have access to specialists. Otherwise, you see your GP/PCP.

    But GPs don’t necessarily have all the information about celiac disease. This led to another area of concern. Some GPs just say “stop eating gluten” and leave it at that. They don’t talk about the potential long term impacts of “cheating”. They don’t talk about (or know about) what might happen if someone with celiac keeps eating gluten. They also don’t talk about how to stop eating gluten. I am trying, but this isn’t an easy process, and I’m highly educated. I have access to some of the best healthcare in the world. And yet, as I detox from my diagnosis (which requires eating gluten), I still find myself getting accidentally exposed.

    And so, this Thanksgiving if someone in your family says they have celiac disease, please be considerate. Think about providing some portion of the meal that is not cross contaminated, so that they too can safely partake in a Thanksgiving feast.

     

     

  • “Brain Fog”

    One of the side effects that some people face during and after chemotherapy (and cancer treatment even without chemotherapy) is called “chemo fog”. Heck AnneMarie Ciccarella used it as a witty title for her blog Chemobrain .. In the Fog.

    Turns out that brain fog is also a side effect that some celiacs get when they eat gluten. There are other chemotherapy side effects that also overlap – the other one that is of particular interest to me is peripheral neuropathy. But anyways, let’s get back to brain fog.

    During chemo, I watched a presentation on chemo brain given by Living Beyond Breast Cancer. So, I though it was interesting to read an article about gluten brain fog from the Celiac Disease Foundation. What has struck me is that post cases listed cytokines as a possible reason for the fog. The chemo brain presentation did a good job of explaining it – it suggested that similar to when you have the flu, your body releases lots of cytokines that could be the cause of the fogginess. Chemotherapy or other cancer treatments could cause an increase in cytokine activity. In those with celiac disease, gluten could cause an over production. In both cases, this can lead to a sense of a foggy brain.

    For me this is just one more reason to completely cut gluten out of my diet. I am still in the ‘detox’ phase from the endoscopy. I am, however, finding that my brain is doing pretty good most of the time. I’m not in the fog that I was in when I was taking tamoxifen, which is also good.

    I am intrigued by the overlap between chemotherapy side effects and untreated celiac side effects. I wonder if there is any association between chemotherapy induced peripheral neuropathy (CIPN) and untreated celiac disease? I wonder if my brain fog an neuropathy during my taxol chemo treatments might have been reduced had I known about the celiac and been observing a gluten free diet? Unfortunately, we cannot set back the calendar and try again. We will likely never know. Oh well.

  • Training for Epic Experience …

    I’ve mentioned before that I find it a lot easier to motivate myself to exercise if I have some end goal in mind. This summer that goal with first the Avon Walk, then the Peak Hike. My goal then transitioned to preparing for vacation. Now, I have my sights set on an Epic Experience – a winter camp for cancer survivors. I’ve been accepted to the January 3-9 camp where I’ll be joining other cancer survivors cross country skiing and snow shoeing in the Colorado Rockies.

    I mentioned to my exercise coach that I have been accepted into the program. She has given me a couple of exercises to add to my routine to help me get stronger in advance of the Experience. So, my weekly exercise routine looks like this:

    • Three times week week I go to the gym, where I spend 40 minutes on cardio equipment, I do a few strengthening exercising, then I spend 30-45 minutes in the pool swimming.
    • Twice per week I spend 2-3 hours walking or hiking (usually 7-12 km).

    For strengthening exercises, I am doing squats while leaning an exercise ball against a wall, and another exercise my exercise coach calls a dead bug. You lay on your back and lift your arms and legs in the air (in reverse table-top, so knees bent). Then you stretch out alternating arms and legs (so left arm with right leg, then right arm with left leg). This does a truly wonderful job of working on the abdominal muscles and kind of simulates some of the movements in cross country skiing. What’s good about it is that it is something I can do at home each night – it doesn’t require special equipment, just a little floor space!

    In addition to all this, I’m hoping to get back on my bike sometime soon. I stopped riding just after my arm swelled with lymphedema. Initially, I was afraid to ride without sleeve. Now that I have a sleeve, I no longer have that as an excuse – however, with spending 3 days per week at the gym, and two days doing long hikes, that doesn’t leave a lot for biking. Especially since my body does need a day now and then to recover – and days like today where it rains most of the day are not conducive to biking – especially given that the underpasses are all full over water.

    And so, for this week, my plan is 3 gym days, and 2 walk days. We’ll try and sneak in a bike day if we can manage it.

     

  • Would a female doctor have written the same prescription?

    The lymphedema doctor said that I needed to wear a level 2 compression garment on my left arm and hand until the swelling goes away – anytime that I’m awake. This could be 6-12 months or never. In addition, I need to wear level 1 compression on my right prophylactically when I: fly, am over 4000 feet, and when I exercise. Somehow, the original prescription for sleeves missed that I need to have one to wear while I was washing the other – especially after exercise.

    He also prescribed a specific brand – Juzo. I’m not sure why that brand over any of the others. They mostly do medical grade flesh colored garments – which is what insurance pays (at least part of). What insurance doesn’t cover is nice pretty garments. The doctor didn’t say anything directly bad about the pretty colored ones, he just questioned whether or not they provided truly medical grade compression.

    I find myself wondering, if the lymphedema doctor was female, would she be more in favor of the pretty colored garments? Would a female doctor better appreciate the desire to look “pretty” even while wearing a medical sleeve?

    I surprise myself at my desire for vanity here. I rarely dress up. I am most often seen wearing yoga pants or hiking shorts – so why do I feel the need to have a pretty sleeve?

    I also wonder if having a pretty sleeve increases compliance? I think for me it will. I’m more likely to wear something that I think is fun and pretty, then something that is dull and makes me look like I have something wrong with me … but that’s just me.

    NaBloPoMo November 2015

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