BC Becky

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

Category: Research Data

  • 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.

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    Today was a good day.

  • Sailing and support groups

    Our day began with a sail around San Francisco Bay on the 2003 America’s Cup boat USA 76 (it was the 76 boat of its type built). It was particularly cool sailing under the Golden Gate Bridge. We thoroughly enjoyed our trip out and are strongly considering their annual pass, which would allow us to go sailing on any of their public sails for a year. I was mindful throughout the sail as to whether or not I’d be physically able to participate. I did ask about people with limited accessibility. They said as long as they can get on the boat, usually they can sit on the life raft (its just a box) at the back, so it isn’t too difficult to enjoy the sale. Even while racing the crew often sit on the deck (floor) to help make the boat more aerodynamic. So, there is no shame in sitting on the floor. So, with that in mind, we shall probably sign up. It will be something to look forward to between chemo treatments. It looks like they sail every Wednesday, Saturday, and Sunday. They also race on Friday nights, but I think that might be a little too intense for me right now.

    After our sail, Scott encouraged me to go check out a newly diagnosed or in treatment breast cancer support group. I was rather nervous about the whole thing. I haven’t really told anybody in person (other than my mothers) that I have cancer. It isn’t exactly an easy thing to say. The support group made it easier to talk about – it gave me a safe space to say it out loud – but also a place to talk about it where they understood the cancer language. Too bad there isn’t a PhD Student Breast Cancer support group so that people understood my academic speak! I also met a couple of really nice people. Since we know so few people in California, it seems odd to me, but the cancer support groups are likely where we will develop new friendships. I was encouraged to come back to both that group and the young adult group. I think I shall give it a try. We are also hoping that they restart the couples group – as ‘Scott and Becky’ could use a support group too, not just Becky.

  • “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!

     

     

  • Caution – this one talks a bit about death …

    First off, I must start this with a couple of pictures from my beautiful ride up Mount Hamilton this afternoon. It took me 2 hours to climb the 7 miles (not quite 11km) of all up hill.
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    Photo & Video Sharing by SmugMug

    Throughout the climb I found myself stopping in shaded corners to both catch my breath and cry.  When I think about what is to come, I put on a brave face, but I still find myself crying at certain thoughts.

    When I was first diagnosed, I was struck by how some things get clear. When we were creating our wills before we went on our Going East bike tour (http://goingeast.ca), I didn’t think I like the idea of my body being used for research. Now, I definitely want my body to be used for research or medical education. I think my time working with doctors and doing research has changed my opinion on this. I also have clarity as to where I’d like my ashes spread – over the molten lava on Hawaii’s big island. These are things that I couldn’t figure out before, but now just seem to make sense. They weren’t big decisions.

    I also decided that I don’t really want to know my prognosis. Prognosis is a statistical measurement of your likelihood to survive. I don’t really care about that statistic, as the only measure that matters to me is me, and no statistic can tell me that.

    Where statistics are handy is in deciding treatment options. When we know that two options have the same outcome (statistically) then it is truly a choice as to which feels right.

    I got recommendation from the PAMF tumor board. They are recommending chemo first regardless of my HER2 status. Chemo would start within two weeks. They need to know HER2 status to figure out the chemo mix. It also takes about a week to get approvals from the insurance company. I think everyone thinks the HER2 will come back positive. Prior to any chemo I would need a sentinel node biopsy on both sides and to have a mediport installed (not sure installed it the right word … I called it a portal the other day … the idea is that they surgically insert a device that allows direct access to a vein for chemo and other medications that are given by IV – with a port I won’t need to get stuck every time someone needs to give me medication).

    We meet with the oncologist and surgeon at Stanford for their recommendations on Monday. By then we should have the HER2 status. If it is positive, then I think everyone will agree that it is sentinel node biopsy followed by chemo.

    HER2 is a bit of a mixed blessing. It is associated with increase morbidity, but the treatments for it have changed a lot. They have completely new regimes which are providing to be very effective (form what I understand) – so the morbidity statistic may be based on old treatments, and the new treatments haven’t caught up yet … not sure, will need to do some more research. Whatever the outcome, we shall adapt and move forward as it is the only direction to go!

  • Long day at Stanford

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    Our day began by driving up to Stanford early so that we could avoid too much rush hour stress. We decided to check out breakfast at the cancer center. We shan’t be bothering with that plan again, as all the options involved eggs which I cannot eat that often. Oh Well. The coffee was good.

    Our first appointment was with the surgeon. They had also scheduled an MRI, but we were not sure if we were going to stick around for it. We would only do the MRI at Stanford if we thought that I’d be seeking treatment at Stanford as they prefer the MRI be done at same location.

    We immediately noticed a difference. The automatic assumption was not mastectomy. They began the conversation with the assumption that a lumpectomy was an option. Actually, the surgeon I saw specializes in nipple sparing techniques. An important comment had something to do with 10-15 years and same mortality rate for both mastectomy and lumpectomy with radiation. I’m not 100% certain how I heard, so we are asking for clarification. The idea was though, that lumpectomy, plus radiation and minimal reconstruction is a real option. When we go back up, she wants me to also consult with a plastic surgeon. So, the result could be two smaller boobs – rather than no boobs. One interesting side-effect of radiation is that the breasts don’t grow (or grow slower) – so if you gain weight you don’t gain breast. This is an issue if you have only one breast cancer, as you can then become lopsided post-surgery. With both, this wouldn’t really be an issue. Upon reflection, Scott commented that you could really tell the doctor’s passion – she was passionate about creating the best outcome for women long term – so an outcome that would make them happy with the results well after the cancer.

    Throughout this process, everyone has been very clear to highlight that cancer treatment is an individual choice. They provide you with the options, and in the end you need to be the one that decides which option to take. Some of the best advice I have received is “you do not need to like all your doctors” and “choose who you want to trust, and then trust them.”

    I was sent for an axillary ultrasound (ultrasound of the armpits) as that had not been done at PAMF. So far, no one has found any lymph node clinically (that is by feel), and the ultra sound is done to see more detail. The ultra sound saw nothing on the right and wasn’t determinant on the left, but there is swelling from the biopsy so nothing was clear.

    We met with the oncologist, who I really like. Actually, almost immediately I liked him. I’m not sure why, but I felt that I could trust him. He examined me then went off for a bit, and when he came back he brought in the surgeon and the fellow (surgery fellow) – so I had all three doctors in the room talking to me at once (that was kind of nice). We all talked briefly because I had the MRI appointment, and 4pm was fast approaching.

    In general, we don’t yet have enough information for a treatment plan (we knew that). They wanted to see the MRI results and more importantly the HER2 results. As far as everything we have seen so far, all indications are that the lymph nodes are clear (good thing). If the HER2 is positive (I would then be triple positive), then the HER2 regime would be indicated before surgery (I got a sense that this is the expected outcome if indeed I the tumor began to grown when I think it did). One benefit to doing something before surgery is the chance that the tumor might shrink. Shrinking the left tumor would make surgery easier – especially if the surgery is a lumpectomy.

    If I were to be HER2 Indeterminate (not positive), there was a potential clinical trial (because even with HER2 Indeterminate, I still had some HER2; however, I didn’t qualify because of the second breast cancer). The difference would be have been the post-surgery treatment.

    The day ended with an MRI. It is perhaps the oddest thing I have ever experienced. Unlike all the pictures, you are in the MRI machine on your stomach with holes for your breasts to hang down. The test took 30 minutes, and it made the oddest sounds. At one point it sounded like a fire truck was whizzing by. Other times it was clicking, and then shaking. There were whirs, honks, and other sounds that somewhat reminded me of the sounds on the container ships. Truly, it was perhaps one of the oddest experiences I’ve ever had. When the test was over, and I got up, I was struck by how sore I was. I had not realized that I spend half an hour laying down with a large portion of my body weight on the center of my chest (as my breasts where hanging) and my arms were above my head. I’m not really looking forward to future MRIs!

    When we got home, we both collapsed. It was a rather exhausting day.

    Although I didn’t like the initial feel at Stanford (there were a lot of sick people walking or being wheeled around), I did really like the doctors. More importantly, I felt a level of trust with the doctors that I don’t think I felt at PAMF. At PAMF the doctors are all really nice, but I wonder if they are too conservative. I think I would be happy there if I had simple breast cancer, but I don’t. What I like about PAMF is that I didn’t have to see a lot of other sick people, so I didn’t feel sick. At Stanford, there was obviously a lot more people being treated for a lot more serious disease. It makes sense, but it did make me feel for the first time that I too was sick – which given how exhausted I was when I got home … however, after a nap, and some food, I’m feeling a lot better. I’m hoping that I wake up tomorrow with more energy as I’d like to get in a decent bike ride … too much of the last two days has been spent indoors.

  • 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 …

     

  • The challenge of time and holding a thought

    Right now I’m finding that my biggest challenge is time. Things are moving so very quickly, and I’m trying to manage many different appointments, phone calls, blog posts, an other notifications and minute (not sure I’ve spelled that right, just say it with a French accent).

    Most of yesterday was spent dealing with my eyes. As some of you know, I had cataract surgery in January in my left eye and April in my right eye. I also had a YAG capsolectomy (sounds complicated but it isn’t) in my left eye. I had scheduled it for my right eye, but that is now postponed. It isn’t a big deal but may eventually affect my ability to drive at night. Currently things are OK. The eyes didn’t come in quite right after cataract surgery, so I was looking into PRK to make minor adjustments. That now is on hold – so I had to go to an optometrist yesterday to get some prescriptions for glasses and contact so that I can function over the next year. After that it was a trip to Costco to find new glasses, order them, and order contacts.

    With that taken care of, my number one priority pre-surgery is biking. That is, back when I thought I might have cancer (after my family doc appointment) the one thing I decided was that I would train so that I was in the best physical shape possible before surgery/chemo. I want to make sure I’m going into this as strong as possible. For me this means allocated 2-3 hour a day (or more) for biking.

    My second priority is to have some fun. Years ago, I read the book “From chocolate to morphine: Everything you need to know about mind-altering drugs” (I highly recommend it). It talked about finding things that cause your natural high – like when you were a kid and you would spin around really fast to cause a bit of a high. Anyways, one of the things that causes that natural high for me is sailing. So, we are looking at ways were we could go sailing more often. It can be very physically demanding, which can be a challenge. This Saturday, we are headed up to SF to go sailing on the 2003 America’s Cup boat. If we enjoy it, and if there are less strenuous ways to participate, we may consider buying a season crew membership, which would allow us to go sailing anytime they have a public sail – which is most weekends. So, we could spend every Saturday or Sunday going out for a sail (for as long as my body allows). Here is hoping that we enjoy it!

    An now, my timing is running out yet again … need to hop in the shower, change, and run to the Apple Store before picking up Scott and heading to the oncologist appointment.

  • 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.

     

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