BC Becky

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

Category: Emotional Journey

  • 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?

     

  • I am cancer free

    It is amazing how difficult that was form to type and how difficult it was for me to say. It is almost as difficult as it was for me to say “I have breast cancer”.

    I’ve actually been cancer free since December 17, 2014 – when the last of my breast tissue was removed from my body and my new ‘not breasts’ were created. However, whenever someone asked, I always said it with the caveat as far as I know. I did not want to jinx it, and say it. But that has meant that I’ve been carrying the burden of not believing it. With every new (or old) ache or pain, I fear that it is cancer.

    You see, I’ve had a variety of doctors appointments this week. Mostly 3/6 month checkups, but also a bit of a scare over headaches. I had both my oncologist and my breast surgeon say it No evidence of disease. Actually, it was amusing. When my breast surgeon walked in, I told her, I needed to hear the words. I needed her to say it. Her comment was that she writes it down all the time. She said it multiple times during my checkup. All clear – no evidence of disease – you are healthy, get on with your life, next checkup in a year – but if there is anything of concern, don’t hesitate to call/make and appointment.

    Now that all my doctors have told me, I am finding that I just needed to say it. I need to say it a lot. I need say it until I can say it without crying. I need internalize what I’m saying and actually believe it.

    After my appointment, I went for one last visit to my tree.
    Photo & Video Sharing by SmugMug

    Most of my non-cancer related healthcare is at PAMF. I’m going to have to start calling them first, rather than calling oncology first. As I walked back to the car after taking the picture, I realized that I never want to see the inside of the Stanford Hospital again – ever!

    I then went to the gym. I practiced saying I am cancer free, first with my friend there, then with others in the group (my friend kept encouraging me – or more like making me). I still cannot type it without crying, but I’m getting there. So one more time, I am cancer free.

  • Rashes and ouches

    After the first epic hike (Friday), we setup camp and made dinner before heading to the showers. I felt fine, but when I removed my clothing I noticed a rash on my breasts. Of course, I freaked out. I seem to be doing that a bit more lately that perhaps I should. My first thought should not be cancer! After showering, I showed Scott and his immediate comment was looks like heat rash. And of course, that made sense. It was a hot day. We hiked for 5 hours and I sweat. My new breasts don’t have lymph nodes and are prone to such things as heat rash. Because I cannot feel them, I did not notice when the rash happened.

    After the second epic hike (Saturday), we drove home stopping for dinner on the way. We hiked for almost 7 hours. Again I sweat. This time I was wearing a different sports bra – one that was perhaps a little too tight. By the time I took it off to shower, I had some pretty serious indentations and rashes in various places. Again, I did not feel anything, so I had no idea this was happening. Had I felt something, I would have adjusted the bra or perhaps even removed it!

    The plastic surgeons warn us (by us I mean those who have had reconstruction of either the flap or implant variety) not to wear underwire bras. The reason for this is because if the wire gets loose you can injure yourself, and with a lack of sensation you would not know there was a problem. I now know that this is also an issue with too tight sports bras (now I need to go shopping!). I cannot tell they are too tight or that they have seams in unwanted places. I don’t feel the problem. I only notice the issue when I finally take it off and head to the shower. This provided yet another reason to be thankful for the mirrors in our apartment – they make it easy for me to visually examine the areas I cannot see by looking down.

    Of course the next question is, do I need to wear a sports bra at all? I’m not sure. I sent an email along to my plastic surgeon to ask. It may be time for me to clean out my dresser drawers and be rid of all my old bras that I no longer need and have no desire to ever wear again. I just hate throwing perfectly good bras away – and yet, I know that I cannot donate them anywhere!

  • Perspectives

    Sometimes, when you are living it, you focus on one perspective and miss everything else around it. Sometimes all it takes is a friend to make a comment that helps you re-see the issue from a different perspective.

    The theory behind cognitive behavioural therapy is that you can change how you feel by changing how you think. For me, this matters, because I will find myself feeling down or thinking about worst case scenarios – catastrophizing. Worrying. And sometimes, it takes the help of a friend or family member to change the perspective.

    On June 17th, I celebrated 6-months cancer free (woo-hoo). But with this came worry. I saw a graph once about recurrence rates, and it had a bump at 6-months and a bump at 5-years. I think this happens in part because 6-months and 5-years align with doctors visits. It isn’t that it is 6-months post treatment – it is 6-months after my last visit. Anyways, that timing is coming upon me soon. I found myself worrying because no one I know has had a recurrence after I met them. That is – I know people who have had recurrence or worse progression, but they were diagnosed with this before I met them.

    As an aside – progression is a term I’m becoming more familiar with and one that I haven’t used on this blog before so people might not be familiar with it. The term recurrence is usually used when you have a local recurrence of the disease. This is when the disease is found again in the same area. A local recurrence may happen if a new tumor appears on the chest wall or in the opposite breast (not that common). But progression is when the disease spreads – it typically means that you went from an early stage to metastasis (stage 4) or if you have already been diagnosed stage 4 it means the cancer is growing again.

    So I don’t know anyone who was diagnosed at the same time as me who have had a recurrence or progression. I know that statically, this means that someone will .. and sometime soon .. and this worries me. I mentioned it to hubby and he immediately put a different perspective on things .. he said, no one has and maybe no one will .. that it is a good thing that no one has .. it made me think that I need to change how I think. I should be celebrating that no one has, rather than worrying that someone might. It may sound like a little thing, but it is actually a huge shift in perspective – and that shift helps me clear some of the fog that is my current brain …

     

  • Permission to be selfish, saying no, and looking to the future

    Crossing my stream this morning was a post by Cancer Curmudgeon about her post-cancer Mean Streak.  I read it and I thought, what has cancer changed in me? I’ve thought a lot about this lately.

    There are three things that come to my mind: (1) I’m more selfish, (2) It’s easier to say no, and (3) I have a shortsighted view of the future.

    First, I often feel that I’m being selfish. When I was going through active treatment, it was easy to give myself permission to be selfish. I often tell other women who are in treatment that they are allowed to be selfish – this message is especially important to mothers who tend to be constantly giving to their children such that they themselves do not get taken care of. During active treatment, it is important to let people take care of you. However, I’m past that. I’m in active recovery now. I still find that I am selfish. That is something that has changed in me. I’m empathetic to others, but I’m also aware of when it becomes a drain on me, and I shut that drain down. It is a defense mechanism that I need.

    I am also finding it easier to say no. You would not get that by how much I’m doing. I still suffer from FOMO (Fear Of Missing Out). I end up signing up for too many things because I don’t want to be missing out on things – but on the other hand, if it is something I don’t really want to do, saying no is a whole lot easier than it used to be. My energy is still limited, it is finite, and so sometimes I just need to say no.

    Unlike Cancer Curmudgeon, my priorities are clearer. This also makes it easier for me to say no. I’m still totally lost as to where I want to go next. My view of the future is very shortsighted. During active treatment my worldview/future view was to the next step in treatment. During active recovery my worldview/future view is to my next trip. I’m traveling for both vacation and to attend academic conferences – which is about the closest thing to ‘work’ travel that I do. I enjoy both, but both are also exhausting. My future view only goes so far as the next 3-4 months. I cannot yet think of my future beyond that point. I don’t know how well I will be. I don’t know how recovered I will be. I cannot think of plan much beyond that window right now. Perhaps this is one area where I’ll know I’m out of active recovery. That is, when I can think if my future beyond the next 3-4 months, then I know I will have recovered – whatever that means!

     

  • A year ago today …

    A year ago today, I went to see my primary care (family) doctor about a hard spot on my left breast just below the clavicle. I was sure it was nothing and that I was just over reacting, but figured that it was worth a visit to the doctor just to be sure. I didn’t know then that most breast cancers are not hereditary. That the majority of women diagnosed with breast cancer do not have a relative that has experience it. Cancer wasn’t something that was common in my family. I was more worried about heart disease, stroke or dementia. The thought of breast cancer never really crossed my mind.

    So I told my primary care doc that I just wanted to have her check this out. I had not yet mentioned it to Scott. It was just something I had noticed the week before, and it didn’t quite feel like a muscle strain, but I figured that was what it was.

    As she systematically examined my right breast first, and then the left breast she paused.

    The look in her eye was telling. She asked Is this what you are feeling? 

    Yes.

    She examined it more detail. I now appreciate that she was feeling for the size of it. She told me that the next step was to do some diagnostic imaging. She said ultrasound and then mammogram (turns out they do it in the other order). She placed the order.

    I went downstairs to the area where I could make an appointment for mammogram and ultrasound. I didn’t want to wait for them to call me. It was Monday morning. The earliest appointment I could get was Thursday afternoon.

    I went home. Unable to focus on much, I decided to go on a long bike ride. I hopped on my bent and headed north. I ended up out near Shoreline and Scott’s office, right about the end of the day. I texted to see if he wanted to ride home with me (he had biked into work that day). He said sure, so I rode out to his office.

    He came out with a couple of his colleagues who wanted to check out the bike. Since my recumbent is easier to let others ride than his (I have pedals that work better with street shoes). One of his colleagues gave it a try.

    The delay was difficult. How do you tell your husband that you found a lump in your breast and your doctor is concerned? That is not easy. There is no right time. I knew I had to say something but didn’t want to say it in front of his colleagues. So, as we were pulling out of the parking lot at his office, both on our bikes, I blurted out to him:

    I found a lump in my breast. [Family doc] is concerned. I have follow up imaging on Thursday afternoon so I’ll need the car.

    He had the bike ride home (about 30 minutes) to process the information. We didn’t know anything yet. It still could be nothing. There was no point in getting worried if it was nothing.

    At dinner that night he told me that I could have told him about the lump sooner. That I didn’t need to hide that information. That he would be there for me. That whatever it was, he would be there for me.

    People often say that the not knowing time is the worst time. That time before you are definitively diagnosed, when you don’t know if your whole world is about to be turned upside-down or it is nothing. Looking back a year later, I’m not so sure I would agree. I’m pretty sure I’ve gone through some worse times. I was healthy back then. Feeling stronger than I had ever felt in my life.

    That day, I resolved that until I knew for certain what was happening (I still didn’t really think it could be cancer), I would concentrate on getting stronger. I figured that if it was indeed cancer, then the stronger I could be going into it, the better off I’d be. Since I wasn’t really able to concentrate on work anyways, it made more sense for me to concentrate on bike rides and swimming. Exercise became my priority, but also my outlet. It was my coping mechanism. It kept me sane. It still does!

     

     

     

  • Who am I?

    When meeting new people, I’m often asked What do you do? For the last three years I’ve been able to say that I’m a PhD Student. I’ve been able to say that I’m a scholar. But now I’m struggling with that identity. I’m struggling with who I am.

    The last time someone asked What do you do?  I answered that I’m a writer. I’ve been a writer before – but before I was a technical writer. Professionally I was both a technical writer and an instructional designer. But I don’t feel like that is where I’m at today. My PhD studies have made me more of a researcher, an innovator, and a writer. I’m now more familiar with writing in different genres – and I have more to learn on that front.

    For now, I no longer identify as a PhD Student. I have put my studies on hold for another year. I need to figure out what I want to do for a research project, and I’m just not ready to jump through all the hoops that are needed to complete the PhD process. Not yet anyways. Maybe in January, or May, or September 2016. We’ll see.

    For now, I am going to identify as a writer, and perhaps as an innovator. When asked what I write, so far it has mostly been blogs, and academic articles. I think I may finally be ready to start writing the Going East books. I have in my mind a series of eBooks, that combines my lived experience on the bike trip with research – sharing a little more of the story around the places we visited – as well as the 1000s of pictures we took. For the most part on our Going East trip, we were not tourist, we were travellers. We spent time in places, met people, got a sense of the feel for where we were visiting. I think our stories around our time in Syria are especially important to tell. I think my PhD studies have better prepared me to write the Going East stories …

    Before starting the PhD I did NaNoWriMo (National Novel Writing Month) – In November every year, writers from around the world commit to writing 50,000 words in one month. I did NaNoWriMo the November before I started my PhD studies (November 2010). The focus is on writing, rather than on quality – as such academics have tried to model NaNoWriMo with AcWriMo (Academic Writing Month), but that has proven to be challenge – as word count doesn’t make as much sense in academic writier – as often it can take all day to write a paragraph because of the need to research while writing. Plus, in the academic world, verboseness is not treasured, rather writing well concisely matters. Anyways, this year, I shall need to think of what I want my November writing project to be. Perhaps, I will work towards one or two of the Going East books during NaNoWriMo.

    It is interesting how time in nature helps me figure a few things out … I’m sitting at a campsite writing this out. Things are looking a little clearer for me right now. I clearly needed to spend some more time out in nature enjoying the ancient trees.

     

  • Tenacity – or Lack There Of?

    I used to see myself as someone with lots of tenacity. It is what got me through tough days on our Going East bike tour, but also the tough days during chemo. I walk through the queasiness and neuropathy pain. I exercised every day!

    Now that I’m no longer in active treatment, I’m finding it more difficult to call upon my tenacity. It is a daily struggle. I do find it easier when I’m with someone. Hiking with my hubby while on vacation, I find myself hiking longer trails at higher elevations than I thought I could, but still, I am comparing myself to before and finding myself wholly inadequate. I don’t want to feel pain when I hike. I don’t want to be limited by how much my feet hurt.

    I find myself looking back and wondering where I found the strength before? What was inside me that allowed me to call upon my tenacity and perseverance to get through it all? How can I find that again and get that back?

  • I had planned to write

    I had all these great plans about what blog post I would write as I approach the one year mark … I was going to count how many doctors appointments I’ve had in the last year, but when I looked at the calendar for last June I almost lost it. I just could not go back there and analyze it, as if the data held no meaning, or emotion.

    On June 1st last year, after a long bike ride around the Alviso, as I showered I noticed a hard spot on my left breast. I thought I’d pulled a muscle in my peck. I waited a week, and when it didn’t go away I went to see my family doctor. A few days after that – June 12, 2014 – the radiologist told me I had breast cancer.

    I had planned on looking back at my accomplishments over the last year. I wanted to write a post that celebrated some of those accomplishments. Despite chemotherapy (4 AC, 9 Paclitaxol) and three surgeries, I still managed to co-author at least two papers, present a poster at a conference, attend a conference, write 320 posts for this blog, write 60ish posts on my academic blog (http://rjh.goingeast.ca), create on free open online course (http://shouldiblog.org), with my buddy Maha – launch http://virtuallyconnecting.org, walk 274km, cycle 1091 km, and hike 90km. Unfortunately, I didn’t track my swimming.

    I expect that the next couple of weeks will be tough – but I’m running away from it all. For the next 10 days, the days will be days, but they won’t be dates. I’ll be off camping in the Eastern Sierra-Nevada – mostly out of cell phone / data range. I’m hoping to breath in some mountain air and just experience life. Sorry, don’t expect to be writing much while I’m away. I’m taking a vacation from it all. We’ll see how well that works!

     

     

  • Active recovery and numbness

    I mentioned in my previous post, that I’m in active recovery. I’ve decided that this is a thing, a new term, something that I’m going to start using when people ask me about where I am in my cancer journey. The terms used are usually active treatment, and recovery and renewal. The latter doesn’t truly describe where I am. If I say I’m in recovery, there is an expectation that I have recovered. This is not in any way true.

    For me, active recovery represents the stage I’m in. I’m still going to health care appointments at least twice a week. They may not be appointments with cancer doctors, but they are still cancer related appointments (e.g. oncology physiotherapy, sleep clinic, psychiatry). I’m also taking part in exercise programs (e.g. Living Strong Living Well), and making a point of getting at least 1 hour of exercise every day. Each of these activities takes time out of my day. Then add in that I’m trying to eat better, which involves cooking my own meals, mostly from scratch. Again, something that take time out of my day.

    My brain is not functioning at full capacity yet. This means that it often takes longer for me to do things. I cannot concentrate as well as I’d like. Although I’m getting better every day, I’m still suffering some of the cognitive side effects of chemotherapy. These are weird, as you do not know that you are experiencing it until it is healed – then you realize just how much of a fog you were previously in.

    Then there are the real physical issues. I have some tendonitis in my shoulder that makes some physical activity difficult. I’m also experiencing a lot more neuropathy pain in my feet. This is in part a good thing, as it is a sign of healing, but it is also rather painful and can limit how much physical activity I can do. My ability to walk seems to have plateaued (or even decreased). I’m stuck at that 5km distance. I’m hoping that some hikes during our upcoming vacation will help me push past that boundary – but I’m also very aware that I may not push past it anytime soon.

    I’m also becoming more and more aware of the lack of feeling in my breasts. This is an odd thing – it is almost like after getting a filling at the dentist. You keep wanting to feel your face to confirm that it is there. Eventually, you touch it to confirm that feeling is returning. I keep wanting to feel my breasts. Each time I confirm that they are there, but also it confirms that there is no feeling 🙁 – this test of feeling of one’s breasts is not something one should be doing in public! I also need to massage my breasts, as fluid can build up if I don’t (there are no lymph nodes in the reconstructed breasts). Before I would touch them to ensure they were healthy, now I’m touching them to see what I can feel. There is a new, different, purpose in my mind as I do the familiar activity. The new breasts are also a reminder of the loss. Another something that I am just now starting to come to terms with. As the cognitive numbness fades, the physical numbness serves as a reminder of all that has happened in this last year.

    So when someone asks me where I am with my cancer treatment, my answer will be active recovery. I’m actively trying to recover from the insult that was/is cancer.

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