BC Becky

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

Tag: reflection

  • TV Breast Cancer

    Now, I don’t watch a lot of TV, so my perceptions may be off a bit, but I’m still a little mad. When someone on a TV show gets breast cancer, they don’t portray it right at all. They don’t show you the decisions that need to be made. They seem to always show you someone going through chemo – which many women with breast cancer don’t do – and they don’t show you surgery – which pretty much all women with breast cancer do. By dramatizing the whole experience they do nothing to prepare you for the reality of it. This makes me rather mad!

    Specifically, I remember last year one of the lead characters on Parenthood had breast cancer. She lost her hair, she got sick, she ended up in the hospital at one point because she ignored an infection – but they never dealt with the surgical implications of breast cancer – the dealing with what it means to have a part of your body cut off – and what it means in our society to not have a breasts. So yes, I’m expressing anger again, so perhaps that is the phase I’m beginning to enter in ernest.

    I’m also annoyed at our society. The entire concept of reconstruction is so much more emphasized here in the US. I recall one of the women in my PhD class commenting that this was “silicone valley” as in the land of fake boobs (she was mixing up LA and San Fran) – but from a breast cancer perspective, it certainly is the land of fake boobs (although from what I understand many people choose techniques that use their own body fat rather than silicone implants). It is like people will think I am weird if I do not opt for reconstruction – and yet I see all these non-essential surgeries and the extra pains that women go through – and I question it. Why would I want to subject myself to that (yes, there is some irony here, in that I had PRK eye surgery, but there was a defined quality of life benefit for that – I just don’t see that defined quality of life benefit for reconstruction). Many of the women I know going through reconstruction did not have chemo – so they had one less toxic experience with breast cancer – but still.

    In some ways, I think dealing with an inside cancer is harder and in other ways it is easier. With a lymphoma, it is much more serious because you cannot simply “cut it out”, but then you also don’t have to deal the surgical implications of cutting off a body part. I also feel for those who have slow growing cancers, who cannot actually feel their tumors. If you don’t have the physical evidence of the cancer, the doubt creeps in – do I really have cancer? Worse is that until treatment, you don’t feel sick – so there is also the perception that it is the treatment that makes you sick. I’m not quite in that case, as I have a large mass in my left breast. There is no mistaking it. It is there. But I do feel it regularly, and I question, “it is getting smaller on its own”, “it is spontaneously curing itself”, “maybe I don’t have to do this chemo thing after all”. I can only imagine how much worse those doubts would be with an invisible cancer that you cannot feel.

    Right now, I’m feeling strong. With each passing day the wound associated with the port is healing. I’m hoping for a longer bike ride today – might even try riding one of my upright bikes. I should be able to swim by next week, depending on when the third biopsy occurs. By not have surgery first, I’m loosing some certainty in the cancer – as they cannot fully stage it until it is removed and full pathology is done. I’m finding that the imaging doesn’t provide enough detail – to go from one larger tumor to two smaller ones under MRI which was not seen on ultrasound (although they are double checking on Monday) and mammogram, demonstrates the lack of accuracy in imaging.

     

  • Preparations

    I’ve talked before about how other things I have done in my life have prepared me well for this new journey. At the chemo class yesterday, the nurse talked about taking it one step at a time but also about celebrating between the various phases. This is very much the same advice given when you start a PhD. It is said “this is a marathon, not a sprint”.

    Also similar is the challenge in planning. Many of my PhD friends can relate to the challenge in planning things like family vacations. There are so many variables, and so many uncertainties, that planning is difficult. You want to make sure you are in a good place to actually take a break.

    And I’m a planner. I’m someone that likes to have things mapped out. I had my schedule mapped up to the end of 2014 – exactly how I would get my data collection finished, the number of trips to Ottawa, various conferences. Now I just don’t know. It is nice (and yet scary) to have a start date, but there are still so many uncertainties. I’ll get to learn a lot about blood counts – if any of my counts fall too low, they will pause treatment to allow them to recover. This of course, will put a wrench into any plans that I make.

    Fortunately, I also have the experience of our bike trip to draw on. There, we adapted. Although we still had some scheduled components. We had container ships to catch – and the ships wouldn’t be waiting for us – we needed to be there when they were there. At times, that meant using trains or buses to help us get to where the ships were going to be. We had to adapt our plans.

    With the shift of chemo start to July 7th, and hopefully not too many doctors appointments next week, we have a chance to get away for a few days (we hope). Well before the whole cancer thing, we had booked a campsite up at Yosemite for a few days. Although we had originally planned for four nights, we may only go up for a couple of nights – but still, it will be nice to get away. I have not yet been to Yosemite, so it will be nice to see what all the fuss is about.

     

  • Significance of dates and getting ready for chemo

    It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

    Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

    On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

    We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care. Photo Jun 25, 2 35 31 PM

    Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

    I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

    I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

    Chemo calendar:
    July 7 – AC
    July 21 – AC
    Aug 4 – AC
    Aug 18 – AC
    Sep 1 through Nov 17 – weekly T

  • Should I blog?

    As a blogger, I often get asked ‘should I blog?’  I can testify as to why I blog and the benefits that blogging provides for me, but I also don’t think that blogging is for everyone. Blogging is work. Even with inspiration a single blog post can take 1-2 hours to write. If you aren’t a writer, then the act of blogging can be difficult (heck, even if you are a writer it can be difficult).

    One of the benefits of blogging versus writing for other mediums is that you have complete flexibility. You don’t have a requirement to write every day or every week. You can write whenever you are inspired. That being said, if you don’t write regularly, then your readership will fall off – people will worry about you – because they use your blog as a way to gauge how you are doing.

    As a cancer blogger, one of the benefits I’ve experienced is that I only need to write things once. Anyone who cares about it can choose to read my updates. There is no need for people to read every detail of my experience, but those who want to know the details can choose to read about it on my blog. I don’t have to type endless emails with the same information.

    If you aren’t typically a public person, there are private blogging options. You can create a private blog on WordPress or Blogger, where only those you invite can see it. A better choice might be Caring Bridge. Caring Bridge let’s you setup a website where you post updates but it provides a way to coordinate what you need. You give access to your friends and family and they can use that as a way to figure out how to help you. I may yet need to set this up, as I go into chemo – we may need local help with food – not sure yet as I don’t understand the implications of chemo. I usually prepare the meals – but does chemo mean that I cannot cook for Scott for the first 48-hours? I don’t know yet. It isn’t just about a desire to not cook, there is a real health concern regarding passing on the chemo drugs to your care givers.

    So when people ask me ‘should I blog?’ I first tell them to think really hard about it. How public do they want to be? How much do they like writing? Why do they want to blog? And then I offer to help – if you want to blog, I’m happy to help you get started. It is the least that I could do!

  • Why I take selfie’s

    A friend is doing a sermon on selfie’s and exploring the role of selfies under various contexts. Scott and I took selfie’s throughout out Going East journey (before everyone had Smartphones and it became trendy). We did it because it was a fun way to say “we were here” without leaving an impact on the places we visited. I would love to have included a selfie of us at Palmyra Syria, but it appears we didn’t take one. So here is one of us at the monastery at Petra, Jordan. The picture actually make the monastery look small – so I’m including a second one that has me standing right next to the monastery so you get a sense of scale.

    IMG_3949-XL IMG_3946-XL

    When we first decided to explore Stanford for treatment, it occurred to me that I wanted a series of pictures of me, taken at the same place, every time we go. I wanted a nice tree behind me, but we couldn’t easily find one near the cancer center. We will need to look a little further, as there are a bunch of giant Eucalyptus trees, which seem to be constantly shedding their bark. There is something symbolic in that, as the trees shed their bark I shall be shedding my hair.  When all this is over, I shall have a time lapsed video that shows a series of pictures of me as I progress through this process. It is both evidence and testimonial to my journey.

    Right now, I’m taking lots of pictures of myself – actually I’m having Scott take pictures of me. If I don’t make it, I want there to be lots of happy pictures of me. I also want my family and friends to see that I am doing well right now. I am strong, and I want to show it through pictures. I may need the pictures when I’m going through treatment, to remind myself where I was before this began, and where I want to come back to.

     

     

     

  • ‘Why me?’ versus ‘it is what it is’

    I hear others say things like ‘why me?’ and I’m somewhat surprised that I have yet to have that feeling. Perhaps it is a bit of denial, but also I wonder if it is related to my outlook on life. I’m not a theist (I don’t believe in a god). I see the world as some form of random chance. I do believe some things happen for a reason. I believe that my past has prepared me for the challenges the lie ahead.

    I remember lying in bed chatting with my husband about the possibility of cancer – before it was diagnosed – and saying ‘it is what it is’ – we will deal with it. There has yet to be the ‘why me’ feeling. Perhaps by not believing in a god, I don’t have anyone to ask the question to?

    Now I’m not an anti-spiritual person. I’m an Unitarian Universalist. I find peace in nature, so today we spent some time communing with nature. We went for a walk in the Redwoods up at Big Basin Redwoods State park. We walked for 9km – according to my Runkeeper app, that’s a record for me. Big Basin Redwoods is perhaps one of my favourite places. The trees are literally 1000s of years old. There is a peace when you are walking and touching these ancient trees – some with battle scares from fires long past. They are survivors.

    IMG_3548  Photo Jun 22, 2 27 20 PM

    We stopped for about half an hour to sit an a bridge over a dribbling creek. We noticed these water bugs that created the most fascinating shadows on the bottom – like moving black dots. Scott has some theory about their feet acting as magnifying glasses, causing there to be no lighting center and a glow outside. You can see it in the center of the picture below. It is amazing what you see when you slow down for a few minutes and just be. Quite fascinating.

    IMG_3544

    Today was a good day.

  • “Wow! I hope you get it out of you soon!”

    A friend said to me “Wow! I hope you get it out of you soon!”

    Honestly, before I had breast cancer, I always thought that if I had cancer, that would be my reaction – just get it out of me. I find it very interesting that it is very much NOT my reaction. The decision to ‘just get it out’ is so much more complicated then I ever thought it was. There are options, and with each option comes different treatments and side effects – and I’m still waiting. If the HER2 FISH test comes in positive for HER2/neu then the decision become easier. There is a drug that has been proven to be quite effective for HER2/neu cancers that can only be given pre-surgery – so neoadjuvant (http://www.perjeta.com/patient/neoadjuvant), which just means ‘before in addition’.

    One of the hopes of any neoadjuvant treatment is that it also causes the tumor to shrink. If the tumor shrinks then the surgery can be less invasive.  The other advantage to chemo first is that I would know my genetic test results before going into surgery. If it turns out that I do have the breast cancer gene (or one of them), then the decision for a double mastectomy makes more sense than doing a lumpectomy and having to do additional screening/tests every 6 months (reoccurrence rates goes to like 80% if you have gene).

    So the feeling isn’t so much ‘get it out soon’, it is more about how am I going to get it out, and  just who scary the surgery itself is. How will I feel when I wake up.

    Man I’m looking forward to experiencing some good drugs during this process. There must be a positive side to things, and good pain meds might be it! Today, I’m hoping to get a total non-medication high – sailing upwind at high speeds on a giant sailboat. When you see it sailing in the harbour it sticks out because it is on such a different scale than the other sloops in the harbour. If we are dry, we shall take lots of photos!

     

     

  • Double-mastectomy and chemo

    If I’m repeating myself, I apologize. One thing that I’ve noticed over the last two or three days is that my short-term memory sucks. I cannot seem to hold thoughts for that long, and I am very often walking into a room having completely forgotten why I was there. Worse, is that I sit in front of the computer intent on doing something, then have no clue what that was, and am easily drawn in many different directions.

    Today we had a meeting with the surgeon and then oncologist at PAMF. I also had a phone call from the social worker, but I didn’t get a chance to talk to her because I was driving at the time.

    There isn’t exactly a plan for treatment yet, just some general recommendations based upon the known pathology. There is a key test (the HER2) that is expected early next week. The preliminary HER2 was inconclusive, and we need to know if it is positive or negative, so they send samples off to a different lab for further testing. To simplify the discussion with the oncologist, we only went over options that made sense for HER2 negative (which is 80% likely).

    The surgeons recommendation is a double-mastectomy. I had concluded this as well when the right came back positive, as I have two separate cancers in both breasts. What is interesting here is that prior to having cancer, I always thought that if this happened to me, I’d want it out immediately. Now that it has happened, I’m not as certain. Yes, I want it out, but the decision over chemo or surgery first is an interesting one. I have decided that I will not do reconstruction. This makes the surgery much simpler. Reconstruction brings with it a lot of risks, and frankly, I’d be happy to never have to wear a bra again! My nipples have never been a source of pride, and with reconstruction, I’d likely look all or most feeling, so if they are not a source of sexual pleasure, then there isn’t a lot of point to keeping them. Especially when nipple sparing surgery is both more complex and can potential increase the chance of re-occurance. So, it is logical. I like logical. And in some ways it is a relief to have the decision made.

    So far, both cancers (left and right) have the same characteristics (HR-positive and PR-positive). Given the growth rate of the left, chemotherapy is recommended. The chemo would be the ACT type (assuming HER2 negative). Don’t know too much about that yet, since we just learned it today, I haven’t looked it up yet. The chemo could happen before or after surgery, so this is the big question right now.

    Now if I am HER2 positive, that means that chemo will happen first, as there are some HER2 blockers that can only be given before chemo. There are complexities with HER2 – including an increase mortality rate – so if you are inclined to pray, pray for HER2 negative on both sides.

    One thing that I’ve learned is that statistics only mean something before you get a diagnosis. They provide hope (e.g. 80% of breast cancers are HER2 negative), but they mean nothing once you have received the diagnosis. It is no longer relevant what the statistics are about HR-positive and PR-positive. Both cancers are positive, so for me it is 100%. Statistics only matter for the unknown future, not the known present.

    Having two cancers is not so common, but it certainly made the double-mastectomy question easier. If I only had one cancer, keeping the second breast would have been expected (unless I’m BRCA positive – but that information won’t be available for a couple of weeks – we are hoping for negative here too). I would have then had a harder decision regarding reconstruction. I would have always wondered if keeping the right breast would mean an increased risk of occurrence, and it would mean mammograms every 6-months on the right breast, and constant worry. Plus it would have been harder to figure out clothing and all those complexities. Yes women do it, but I would have found it difficult – a constant reminder. So, the double-mastectomy was perhaps one of the easier decisions.

    Tomorrow we go for a second opinion at Stanford. It is also a chance to see the Stanford Cancer Center and decide if it is a better option for treatment. The folks at PAMF saw no reason that I would get any different treatment at Stanford given what we know now. The only thing that might matter is if there is a clinical trial that I qualify for at Stanford that isn’t available at PAMF (the PAMF oncologist didn’t know of any). Stanford in some ways, Stanford has the coolness factor – I could say “I went to Stanford” and I’d wear the sweatshirt with pride. But it is also further away from where we live. At least 20 minutes further, and parking costs $12 (parking is free at PAMF and most of the locations are within 5-10 drive from Scott’s office and 20 minute drive from home). This all adds up. And so far the care at PAMF has been superb. So, although I might have been leaning towards Stanford late last week, I’m now leaning the other direction. But, tomorrow will tell. I may get to Stanford and feel that everything is right there … I am happy to know that I have choices, as choice means that I have some sense of control (I’m a control freak) … and with so much of this, I don’t have any control. So, I’ll take what I can get!

    And now, it is definitely time for a good nights sleep …

     

  • And so it begins

    The slow start to yesterday meant that I didn’t get my second blog post written. I shall try and get caught up today (before I completely forget what I was going to write about), but no guarantees.

    So yesterday we received some mixed news about the pathology. Specifically, the cancer in both breasts is IDC (invasive ductal carcinoma). Both are also ER-positive and PR-positive. We don’t know yet about HER2 as that test takes longer. This is a good thing, as it means there are more drug options for treatment.

    Left Breast (this is the scary one):
    grade 3
    Ki-67 count is 38% (this says it is still growing quickly)

    Right Breast (the nurse used the term ‘well behaved’)
    grade 2
    Ki-67 8%

    If you want to better understand pathology, there is a great resource: http://www.breastcancer.org/symptoms/diagnosis/path_checklist

    Today we find out what all this means. We are meeting with both the surgeon and medical oncologist from Palo Alto Medical Foundation (PAMF). Tomorrow we get a second opinion at the Stanford Cancer Center.

    I’m torn between the two environments. In part it will depend on what the treatment options are an who is more suited to doing them. PAMF has provided excellent service so far. It is easy for me to get in to see people and I have access to my care providers via email (mostly – apparently the system will not let them email malignancy pathology so I’ll get a printed copy of my reports at some point today). The nurse navigator phoned me yesterday and was awesome. She was able to follow up with the surgeon, collect all the info I needed, and call me back. That saved me an immense amount of time trying to track down the surgeon. I can see that being a very useful thing. In some ways, the decision will depend on the treatment options – and whether I will have the options I need at PAMF. I’m not actually interested in some of the stuff they do at Stanford – like nipple sparing surgeries and things that are done to help with cosmetic reconstruction. Honestly, I cannot see putting myself through the unnecessary surgeries to save skin that might be diseased. I’ll try to talk more about my outlook on that latter.

    Need to get moving this morning. Feeling much better than yesterday. The ER and HR positive news was good news, but also I got some great anti-anxiety meds from my family doc that meant I got a good night’s sleep.

  • A tough day

    I didn’t sleep well last night, and I know that sleep directly affects how I feel the next day. Reality is starting to settle in, but also fear. With every pain in my body I’m wondering if it is spread. Does the blister on my hand mean anything? How about that pain in my breast? The pain (it isn’t really a pain, more an awareness of feeling) in the breast is especially concerning. I find myself wondering if it is reaching the chest wall? But the logical part of my brain is saying, it could just be the biopsy healing – after all they did stick rather large needles in to extract core samples.

    One lesson I have is to not tell anyone new at the end of the night. Telling people is hard – there are reactions and conversations that accompany the news. Doing so just before bed is apt to disrupt my sleep – but the late day news of the second biopsy is just as much to blame I’m sure. Mostly I’m pointing people to my blog, just so I don’t have to keep saying it. There is an emotional toll that occurs on both sides. Some people want to reach out and talk, but I’m not there yet. I cannot talk about it. I think that when I have a treatment plan, and enough information to actually have something to talk about, then I might be able to talk about it.

    One of the thoughts on my mind is my outlook, and how much planning for the future do I do? I cannot schedule anything without a treatment plan, and I have no clue how sick I will be. I find myself thinking, “I need to do this before I get sick”, as my mind is telling me that the treatment is what will make me sick rather than the disease that I have now. When I talk about the future, I’m thinking about how much do I set things up so that I can pick up where I left it, or that it keeps going while I’m away, versus how much do I just let things go.

    I’ve submitted the paperwork to put my studies on hold starting September for a year. My project wasn’t progressing at all as planned, and a year away will make it unrecoverable. I’m not actually sad about that. I’m looking at what things I can do in the next few months to make the most of the data I already have – favouring the creation of journal articles for publication over any thoughts of constructing a dissertation. I’m more excited about the opportunity to start again with a new project (perhaps an autoethnography based upon this blog – looking at the role blogs and social media play in the mental health of cancer patients and their families). I was filling in something yesterday that had my credentials. I’m a PhD Candidate, which is written as PhD(c). I guess that is the credential that will remain after my name for at least the next couple of years. I remind myself that getting this far has been a huge accomplishment, and is worth celebrating.

     

css.php