BC Becky

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

Category: Navigating the new me

  • May you live in interesting times

    May you live in interesting times

    Funny what happens when you Google a phrase. What I had thought was an ancient Chinese curse, turns out to be a 20th century expression with no connection whatsoever to China. Anyways, the Covid virus has me thinking that we definitely live in interesting times, from a curse perspective.

    So far, my husband and I are healthy. That is good news. I’m getting caught up on some of my outstanding medical issues – some dental work and I finish off my orthodontic work as well.

    Just before my last oncologist appointment, I did a bone density scan. It has been two years since I stopped Prolia and I wanted to make sure everything was OK. Unfortunate, it wasn’t. My bone density is back down to where it was when I started Prolia 4 years ago. It turn out that if you want Prolia to help build your bones you need to keep taking it, every 6 months for life. That is a lot to ask a young survivor!

    My oncologist recommended that I start Zometa – which is a different bisphosphonate and works differently. The biggest concerning side effect is that they can cause necrosis of the jaw, so they recommend getting any major dental work done before taking the medication. In this case, major means anything that affects the jaw bone. Fortunately, I’ve finished the orthodontist stuff and I didn’t need any teeth pulled, so I’m good to start Zometa soon.

    I am super nervous about this. Unlike Prolia which is an injection into the muscle, zometa is given directly to the vein – that is, it is an infusion that take about 15 minutes. It can cause hypocalcemia (low blood calcium) so they check your levels before the injection.

    Of course this led to another level of concern. I have had lymph nodes out on both sides. I generally do not do injections into either arm. I can do a simple blood draw on my right arm, but infusion is a concern. I asked my oncologist and they are saying it is OK to do the infusion in the arm. The other option is the foot which is painful but also finding a vein can be super challenging (my last surgery they had to be a line in my neck which really sucked). So, I’m going to go with the arm.

    Then it occurred to me, if I get the blood draw, then come back an hour later for the infusion, the infusion nurse will be unlikely to find a vein, as the “best” vein will have been used by the phlebotomist for the blood draw. I’m glad this occurred to me in advance, as they changed the type of appointment and now a nurse will put in a line to draw blood which can be used again an hour later (or whenever the levels come back) for the zometa. It means more time there, but one less needle stick.

    I’m not at all looking forward to it. The side effects can suck. The first is flu like symptoms for up to 3 days. This is not the time to have flu like symptoms. It is going to suck – but at least I’m spending most of my time at home anyways. The second sucky side effect is bone pain. This I do not look forward to. I had horrible bone pain with Neulasta during chemo. It is not fun. During chemo, Claritin helped with Neulasta bone pain, so I’m going to try it out for this. Unfortunately the other thing that really helped me was floating in the pool with my clothes on. That won’t be an option anytime soon as pools around here aren’t open (or are only open for serious lap swimming).

    OK this post is getting long. I’ll write another in a few days outlining the other ways I’m living in interesting times. Stay tuned!

    Feature image by Eric Prouzet on Unsplash.

  • An escape to Indian Wells and the desert

    An escape to Indian Wells and the desert

    When I found out that a friend from Ottawa was going to be in Indian Wells (near Palm Springs) for a conference, I seriously considered going to visit her. Then I looked into the conference more – the Literacy Research Association (LRA) annual conference. My academic supervisor suggested that I could benefit from attending. Going involved a long drive, but I decided it was worth it. It was a chance to visit a friend, and also to be immersed in an academic space for a few days.

    With access to a hotel room at the conference (I actually slept in my van and showered in the hotel – sleeping in the van meant I was much more comfortable and had my own space, so I wasn’t disturbing anyone). It worked out well, and I enjoyed the sessions that I attended. I also, especially, enjoying doing Virtually Connecting at the conference. It has been a long time since I’ve been the onsite person for Virtually Connecting. I had forgotten just how rewarding it can be.

    After the conference, my friend and I escaped the resort in Indian Wells and drove up through Joshua Tree National Park before I delivered her to her hotel in Fullerton CA. It was awesome just spending a day with a friend showing her one of my favourite parts of California. We also took some fun pictures.

    Taking off for a week, unexpectedly, at the end of the semester may not have been the best idea, but from a self-care perspective it is what I needed. I’m so glad I did it.

    Here are some photos.


    Julie and I with Joshua Trees in the background.


    Selfie in the Cholla garden.


    Cholla garden overlooking the Colorado desert.


    Cholla garden.


    Cholla close-up – notice the spikes and blooms


    Julie and I in front of an Ocotillo plant


    Ocotillo flowers – Julie had a sharp eye and spotted a blooming plant from the road. There were a lot of the plants but this is the only one that we saw flowers on.

  • Weirdness …

    I cannot describe it any other way than weirdness. On Friday we went up to Hamilton again in order for mom to have a repeat brain MRI. We are going to try again this Friday for the cyberknife treatment. It was weird watching the MRI tech place the IV in mom prior to the MRI. My only other experience with that involved me being the one sitting in the chair getting stuck with the IV.

    It appears that mom is tolerating the Sutant well. The Sutant is clearly doing something, and we think it is helping mom’s lungs, as she seems to be doing a lot better with her breathing – she even forgot to turn on the oxygen when we went for a walk the other day.

    Last weekend I had the opportunity to spend the weekend white water kayaking with a bunch of amazing women. I went with a group from Bay Area Young Survivors, and the group that put on the weekend was the California  Womens Watersport Collective – who provided an amazing group of guides that made us feel comfortable on the water as we stretched our comfort zones. I was super amazed at how well I was able to do in the boat. The last time I was in a whitewater kayak was 1999, and that was in a swimming pool! (taking lessons to help prepare us for our sea kayaking adventure in Gwaii Haanas.

    Tuesday (June 12) also presented the fourth year anniversary of my diagnosis. It is hard to believe that was only four years ago, because it feels like a lifetime ago – and yet, with the experiences I’m sharing with my mother bring me right back to the experiences I had at diagnosis … remembering my first MRI. It is weird the way life takes you back in circles in ways that you never expected.

    Anyways, this post is a series of ideas and thoughts since I haven’t blogged in a while … I’m in Welland now with mom, and things are going OK. I spent the afternoon with a friend and my hubby stand up paddle boarding and walking.

  • Transitions

    Transitions

    I realized that although I was feeling a loss associated with my gym membership, that this was also an opportunity to make a change. Part of that was a reframing of the loss. I started to think about it the same way I felt when my ADA parking permit expired. Back then, I thought about how I should be celebrating that I no longer needed it, rather than dwelling on the losses associated with not having it.

    The gym membership is the same thing. The new program that is replacing the one I was on, only allows people who are two years out of treatment. They do not consider the ups and downs of long term hormone therapy as treatment. This means that I no longer qualify. By their measure I’m almost 3 years out of treatment (March 17 is 3 years since my last surgery). I have also had the gym membership for 2 years – so I have already benefited from the program for two years. Perhaps it is time that I moved on. I looked at a regular membership at that gym, but at $200/mo it just didn’t make sense. That is a LOT of money, given that I primarily use the pool.

    And so, I’m now in the hunt for a new gym membership. I’m exploring options that might work better for me. I’m looking into a yoga studio, which might address part of my gym needs. I also would like to find a decent salt water pool for regular swimming. I checked out one local gym and was under-impressed.

    I’m finding myself look at the things I did before cancer. Swimming, yoga, biking … I need to get back into biking. Since cancer, I’ve added hiking to the mix. I’m actually at a point where I’m doing too many things, that I have trouble deciding which activity I should do on a given day.

    I have reframed my loss into a transition that I shall celebrate. I’m taking one more step towards post-cancer normalcy … not have the membership means I’m not tied to that gym. It means I have freedom to try out other things … once my toe is in good enough shape for yoga (not allowed yet – doctors orders that I can only do exercise that involves the support of my hiking shoes) I’ll join a couple of friends for some regular yoga practice. If the weather holds, I’ll do more biking. And with each day, I add a little more distance to my hiking … hoping to be back on the trails soon.

     

  • Mindfulness and CBT – A #yogamooc reflection

    YogaMOOC has caused me to reflect on the relationship between mindfulness and cognitive behavioral therapy (CBT). In the past I have been challenged with mindfulness instruction. In part, this has been because the instructors taught what worked for them, or what they had been told to teach, but what works for one person may be very different than what works for another. For example, I find that the exercise to focus on my breath really helps me, but I got nothing out of compassion meditation or body scans. For me, mindfulness is about the singular focus and the ability to see my thoughts and let go of them without judgement. I can do this when focusing on my breath – it doesn’t work nearly as well when I’m distracted by other meditations. But that is me. It will be different for everyone.

    In this sense, I see mindfulness as a way to practice seeing my thoughts, and separating me from my thoughts. When I practice mindfulness meditation, I see my thoughts as thought-bubbles, and I watch them come and go, trying to ensure that I don’t attach onto any of them. My therapist described it as “thought” as sense, like smell or touch. We recognized our senses, and mindfulness is a way to learn to recognize our thoughts as a sense.

    Cognitive behavioral therapy (CBT) on the other hand is about changing thoughts. The premise behind it is that you can change the way you feel by changing the way you think. The first step to any cognitive behavioral therapy is to recognize what you are thinking. Once you recognize it, you can categorize it or label it, then you can apply a technique to allow you to change it. Since I learned about CBT, much of the time I’m able to recognize my thoughts and fix them when they are broken. For example, I found myself procrastinating in writing my dissertation. I am normally very self-motivated, so when I saw that procrastination I knew there was something wrong. Further, I had told myself that I would ignore any symptoms that might indicate that my cancer has spread until after I finished the first draft of my dissertation. Somehow, my mind had translated that into ‘when you finish your dissertation, your cancer will spread’. It is completely illogical, but it was how my mind had warped one coping mechanism into another – which in turn lead to me procrastinating. Once I recognized what was going on (it is called ‘magical thinking’ in CBT language), I was able to burst that bubble. I know that my cancer will either spread or it wont and that has nothing to do with when I finish my dissertation. Those two things are not logically linked. By recognizing the thought patterns – stepping back and seeing them – I am now able to debunk the thought patterns and change them.

    In some ways, mindfulness then is the first step in CBT. First you need to recognize the thoughts you are having. One challenge I have is learning not to judge the thoughts. If I judge them as right or wrong, good or bad, then I cannot get to the root of what is causing the thought, nor can I figure out what technique to use to change the thought. I just need to recognize that the thought is happening and that it is a thought that I wan to change.

    Now to get back to working on my dissertation!

  • breast cancer bootcamp

    At the BCC annual conference yesterday, one of the speakers, Dr. David Spiegel, mentioned that patients have much less anxiety if they take time at the beginning to make informed treatment decisions. One of the challenges that we run into when we are told we have cancer is the desire / fear / need to do something about it quickly. IMHO, the early detection rhetoric helps increase this need to do something about it quickly. The message we receive is that if you cancer you need to rush into treatment. However, this is not always the best course of action.

    Note, that I’m not an oncologist or cancer doctor. There are some cases where that rush is indicated, but in many cases, the cancer does not grow so fast that waiting a week or two will have a dramatic impact. Often you end up waiting that week or two anyways – while you wait for detailed pathology results, various scan results, maybe even genetic test results, and insurance approvals (yes that too is part of the process).

    There is a time in that window where patients could do some kind of educational intervention that helps them learn to make more informed decisions, and make decision based upon their personal values, rather than being forced into decision that doctors make for the patient – doctors who often just met the patient and are making decision based upon disease characteristics alone, rather than a combination of disease characteristics and patients longer term life and health goals.

    This got me thinking – wouldn’t it be nice to have some form of cancer boot camp – where once you are told you have cancer, while you wait for appointments and test results, that you could do some of that important identity and values work, as well as gain some knowledge about the disease itself, that would help you make better treatment decisions – better decisions that will help you with longer term happiness?

    When I talk to other survivors about things they wished they knew and understood, I often here things like – I wish I understood that I had choices. I wish I understood that I didn’t need to urgent jump to treatment, that I had even a little bit of time to think through things. I wish I understood some of the true long term impacts of the decisions I was making. I wish I understood some of the side effects better. I wish I understood that sometimes choosing a doctor is about figuring out who you have chemistry with, not necessary who is ‘best rated’.

    There are so many different aspects that are address a little in support groups, but a lot that is not. And support groups are often short duration – 90-minutes once a week or once a month. Wouldn’t it be nice if in that crazy time before you have a solid treatment plan, that there was some kind of experience – a mix of educational, emotional, and spiritual – to help you better deal with the diagnosis and make better decisions? Wouldn’t think help you live better with those decisions?

    I found myself thinking that this is the type of work I’d like to be doing. I’d like to be helping coach women through that process. One of the challenges is that women rarely make it to support organizations, like BCC, when they are in that state. They usually do exactly what they are told by the first doctor they see because of fear – because the rhetoric says that early detection (and therefore quick treatment) saves lives. They end up in support groups after all that has already happened – after critical decisions have already been made – and after they find themselves struggling to live with those decisions or find themselves wishing they were given more options. But in order to get that education (or boot camp) to happen sooner in the process, the diagnosing physicians need to buy into the need for it. They need to be willing to address the fact that they, the diagnosing physicians, are not necessarily the best person to be making these life altering decisions (their job is to outline options, and provide recommendations, but not make the decisions – they are not the ones who need to live with the decisions). In the new world of medicine, where patients have access to information but also to each other through support groups and social media platforms, physicians need to learn ways to ceed control, and support providing patients with the right tools to help the patient make the right decision for the patient – the decision that will lead to longer term acceptance of the situation.

    What do you think of the idea of a breast cancer bootcamp for newly diagnosed? Would it be something that could work in an online format? What type of information and what type of reflection activities would you think would be of value? If you have breast cancer, what did you wish you knew before you began treatment?

  • Goals for YogaMOOC – and breathing after breast cancer surgery

    Goals for YogaMOOC – and breathing after breast cancer surgery

    This week we were challenged with setting our goals for Yoga MOOC – truth be told, I didn’t watch the entire goal video. I’m good at setting small manageable goals as well as longer term stretch goals.

    My goal for YogaMOOC is to try everything at least once. I’m working my way through the videos, 5 minutes at a time. You see, my computer is setup to kick me off every 30 minutes – enforcing a minimum 5 minute break. That lets me do yoga MOOC in those breaks (as well as other chores like going the dishes and making coffee). When I find something that works, I keep it. When I don’t, I move on to the next thing.

    One of the surprising things that is working for me is the short mindfulness meditation exercise (this video – https://youtu.be/Ui5RA6AYZVQ). I find myself more focused and more at peace after doing it. So, I’ve added that in as a regular break. The first time I did it, I was challenged because I did not anticipate the pause in the audio. I was laying down with my eyes closed focusing on the tip of my nose and all of a sudden the sound went off – no more background noise – I thought the video had stopped playing, so I opened my eyes to take a look. I’d recommend that whatever the background noise is, that it be kept, so that it is an obvious intentional break in the speaking, and not a failure of the video to load (the joys of tech).

    The breathing video was particularly challenging (add to the didn’t work for me pile), because it had people laying on their stomach. Fortunately, I discovered this at a yoga retreat that I attended that I need to address breathing differently. My previous yoga training (prior to cancer surgery) had already taught me to stomach breathing (diaphragmatic breath). My chest surgery caused me to use diaphragmatic breathing as a default, but also caused me to not to fill the top of my lungs when I breath – so instead of feeling my stomach when doing breathing exercises, I actually need to practice feeling my chest expand. I also have a lack of feeling in both my chest and stomach, so laying on the mat on my stomach doesn’t help me. I need to use my hands to help determine where my breathing is happening. When I lay on my back with my hands on my stomach, I can feel where the breath is coming from.

    I’ve taken a photo of my step (sorry cannot get a selfie of me in it, I’ll try get remember to get my hubby to take a photo).

    2017-10-25-09-16-13

    I put my legs up no the shower stool (it makes a great leg rest for yoga – which I only discovered yesterday!). I have a small pillow for my head as my yoga mat isn’t overly thick/soft. Also notice that I have my iPad with a chef stand to the side. Here I can play the videos while in position. I find this works really well for the meditation. I’m not yet sold on the body scan – but I’ll try that again tomorrow and see if is something that I’ll keep. I’ll definitely keep the mindfulness meditation practice.

    Now for the off the mat mini-checkin (https://youtu.be/t_n3n9UrQM8), I’ve decided to reenable the breath notifications on my Apple Watch. I’ve set it to ask me every 3 hours to breath. It is a one minute break where it walks you through taking deep breaths. I can use that time to step back and reflect on how I’m feeling at the moment. Asking myself how my back is doing (I have lower back pain issues)? How much energy do I have? Am I hungry? Am I being productive at my computer or is my mind just wondering? Is it time to get out and do some exercise?

    So far, I’m enjoying Yoga MOOC – http://yogamooc.com/ – and I’m hoping it will translate to me being more productive with my dissertation work!

  • Doctors think patients … and don’t talk down to me…

    I wasn’t sure right away what didn’t feel right, but upon reflection I realize that part of my viscerally negative reaction at the Health 2.0 expo today was the number of vendors that talked down to me the minute they realized I was a patient advocate rather than a doctor or tech representative. I guess the good thing that can be said is that they didn’t assume they didn’t talk down to me as a women, rather they waited until they found out I was a patient advocate.

    Then there were other vendors that were developing applications that doctors would “prescribe” to patients in order to increase “compliance”. My challenge, when I question them, they were developing their solutions based upon what doctors thought patients needed to know. They were addressing the reasons doctors think patients aren’t complying with directions. They never thought to get together a focus group of patients and ask them. Maybe, the are afraid that they will find out that they are solving the wrong problem. That the hospitals and insurers won’t pay for a tool that patients actually need, rather they will pay for tools that doctors think patients need (that is the pessimists in me speaking).

    For one demo, to be fair the folks at the booth (CEO and CTO I think) were quite receptive to my questions and suggestions. Now in writing this post I think I might be conjoining or convoluting more than one booth – regardless my point holds.

    The tool allowed doctors to prescribe the avatar for certain chronic medical conditions, like diabetes or heart disease  (they didn’t have cancer yet). The patient then could interact with the avatar, asking medical questions and getting medical answers. Further, the doctor is informed of the questions the patient has. It could also be used to allow the doctor to get information from the patient such as blood pressure (assuming home monitoring via bluetooth device).  My first reaction to this was that doctors already get more information than they can deal with – adding a way to give them more doesn’t sound like it is solving a problem. But I did realize a problem that I think their avatar could help with.

    I think the chemo situation is an interesting one. We are told right away to “tell our care team” and “don’t needlessly suffer”, but then when we do tell our care team they appear to completely ignore what we are telling them. At first you report everything. Then after a while you stop. You learn that your doctor isn’t going to do anything about it, or there is nothing they can do about it, so you stop telling them. In psychology terms this is called “learned helplessness”. It can be really dangerous, especially for chemo patients, because some of the side effects are life threatening. I saw their tool and thought, if it had a way to tell the patient “I hear you” in a believable way, it might be a way to help with the learned helplessness. Sometimes all the patient needs is validation. Personally, I think this learned helplessness problem is a big problem that often gets confused with a lack of compliance.

    The conversations highlighted to me that in some cases the tech companies are trying to solve what they perceive to be a patient problem by asking what doctors think patients need, rather than asking patients what they need. They seem to miss that if the end user of their tool is a patient community, that perhaps the patient community should be consulted as the tool is being designed. I don’t mean after the fact usability testing. I mean asking patients during the early design / concept phases whether they would actually use a tool, whether the tool would help solve the problem, and what the patients see as the problem rather than what the medical team sees as the problem.

    Tech can solve many real problems, but too often tech is thrown at a problem as if it is the solution without really analyzing what the problem actually is.

    Ya, that and don’t talk down to me.

  • Normalization of surgery and toes

    It struck me the other day that the whole concept of surgery has been normalized for me. I knew this about breast cancer surgeries – where the talk of lumpectomies, mastectomies, and reconstruction are just normal part of my vocabulary, but I didn’t realize how that also influenced other areas of my health.

    When my big toe pain came back (I have osteoarthritis in my big toe – I had a surgery about two years ago to clean out the joint which did relieve some of the pain), I went back to see the pediatrist. He recommended a synthetic cartilage implant (www.cartiva.net) that has recently been approved. What is interesting to me is that the studies were done in Canada and the UK.

    What struck me was that the idea of the surgery didn’t bother me in any way. The whole idea of getting a cartilage implant seemed cool more than anything else.

    I’m finding myself wonder, if my willingness to do this is in part because the whole idea of surgery has been normalized for me? I’m not worried about it. It doesn’t feel odd in any way.

    It is also interesting that I didn’t want implanted breasts, but I’m OK with implanted cartilage in my toe. I think part because the alternatives aren’t any better. My toe pain is back. It can be problematic at times. The surgery I had two years ago relieved some of the pain, but not all of it – and my range of motion isn’t great. The x-ray showed that the arthritis grew back. The pediatrist doesn’t think doing the same surgery again makes any sense, because it will just grow back. We knew when we did it, that is was just a stop gap. The idea was that it would give me 5-7 years before needing to fuse the joint. I didn’t get that long, but this option is much better than fusing. It it doesn’t work, then fusing is still an option, so it doesn’t take that off the table. So, logistical me says this is the right choice.

    Do you find that breast cancer surgeries have made it easier for you to approach other health issues?

  • Nancy’s summer blog post challenge

    Thanks to Marie’s weekly round-up, I did not miss this year’s summer blog post challenge from Nancy.

    This year’s challenge involved answering 10 questions. I found myself linking back to blog posts. My research involves analyzing my posts for the first 8-months, so I am very familiar with what I wrote in that timeframe. I’m looking forward to this being done, so I can do the analysis for the first year post treatment, as I learned a lot more in that timeframe. Anyways, here are the challenge questions and answers.

    1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

    The day I finished unpacking boxes, having just moved from Ottawa Canada to California, I felt a lump, except I didn’t realize it was a lump. I felt something and at first thought it was a muscle strain. After a week of feeling it, I went to my Primary Care Physician (PCP) who sent me for diagnostic mammogram (my first ever). The radiologist told me I had cancer, June 12, 2014. I had my first biopsy the same day as the mammo, and while I was having the biopsy the radiologist found a second mass, which was biopsied the next day (via ultrasound). The MRI found a third mass, which was also biopsied this time by MRI. I had three tumors and cancer in both breasts, each with slightly different pathology, but all ER/PR+/HER2-. I recount my diagnosis story several times on my blog, this is one of the better posts: Auspicious dates and my diagnosis story.

     2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?
    “If I had cancer, I would not do chemotherapy”. An AirBNB host suggested that I got cancer because I ate meat, but also said that she would not do chemotherapy. Writing the blog post about it actually turned into an epiphany for me, and helped with my mental health, as I realized that my reaction after diagnoses was not at all what I thought it would be before I was diagnosed – so now, I don’t catestrophize as much about getting METS, because I know I cannot plan how I will react.
    3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?
    My biggest pet peeve is around diet – which is in part why the above angered me so much. I now know that I have celiac disease, so most dietary advice doesn’t apply to me. I just get bothered when people suggest that diet has any link to recurrence.
    4. What is something you want others to know specifically about breast cancer?
    That a lump doesn’t feel like a lump – that what you are looking for is actually a change – so get to know your breasts. I checked mine every time I showered, so I noticed the difference quickly – see Breast cancer pet peeve – it is not a “lump” (public service announcement)
    5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?
    I worry a lot less now, but about once every 2-3 months I spiral down hill and am convinced it has spread. I usually need to see a breast oncology person (nurse practitioner, surgeon, or oncologist) in order to convince myself that I’m OK.

    With each new pain I wonder, and when I don’t get enough sleep my anxiety gets the best of me. I’ve learned to recognize when this happens and how to manage it (usually taking something that helps me get a good nights sleep).

    6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?
    Cancer has made me a different person. I am much more empathetic than I was before cancer. I much prefer to say that cancer has afforded me opportunities. Arthur Frank says it well “illness is an opportunity, though a dangerous one” (Frank, 1991, p.1). Cancer helped me find meaning in my PhD studies, which I had lost just before diagnosis.

    7. What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)
    I loved Teva Harrison’s book, In-Between Days:  a memoir about living with cancer, which I received thanks to Nancy’s Draw on her Book Review Post. She is amazingly talented, but it also gave me a little insight into the diagnosis experience in Canada. I got a lot of insight reading Arthur Frank’s At the Will of the Body. I have also read Audre Lorde’s The Cancer journals, and Cancer in two voices, by Sandra Butler and Barbara Rosenblum.

    8. Besides your family, where do you turn for emotional support?
    I have some online friends who I can text or chat with at almost any hour of the day, but also my hiking buddy, Lori Wallace, who lets me unload my crazy thoughts while we walk in the woods.

    I also I have a great onc-psych nurse practitioner that manages my meds and has introduced me to cognitive behavoir therapy which really helped me.

    9. How many cancer blogs do you read and why do you read them?
    I wish I had more time to read them, but right now I’m mostly focused on writing my dissertation. I follow Becky’s blog, in part because I know her from a face-to-face support group, and I follow Marie’s weekly roundup which is how I found this challenge.

    10. Do you call yourself an advocate? If so, what drives you?
    Yes. I realized that I really like helping young survivor’s navigate through treatment – mostly helping them learn what it means to live with breast cancer, but also how to make decisions about treatment. My experience helps me know how much information to provide at the various phases of the breast cancer experience. I listen and provide support at the time when everything is chaos. I also like helping women navigate the first year post treatment and all the mental daemons that pop up during that time. I’m not a medical professional, and I have no interest in training in that area. I do have expertise in living with breast cancer, and it is that expertise I want to share. When I’m finished my dissertation, I’ll be looking at ways I can do that work and still make a living.

css.php