BC Becky

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

Tag: Information

  • I’m an educator (and my public service announcement)

    A couple weeks ago I was reflecting on who I am. I reported to the blog, that I am an academic, but further reflection has me questioning that. Mostly in the form of what type of academic. Since diagnosis, I haven’t been able to read a single academic article. I’ve browsed through a few, but my concentration and interest have not been there. I’m may not be approaching this ‘cancer’ problem as an academic, but I do want to approach it as an educator.

    I don’t call myself a teacher. To me, teacher means the person who leads K-12 classrooms – a person who helps kids learn. I don’t work with kids. I don’t even work with the average adult. When I teach, it is usually to professionals – I teach teachers and doctors how to use technology. I educate, I don’t teach.

    I also educate through my writing. As an instructional designer, I have done a lot of educational writing. I create training programs and packages that are designed to help professionals learn new skills.

    But what does that have to do with this? I find myself wondering how my cancer can be turned into an educational experience? Who would I be educating? Who can learn from my experiences? How can I make most out of this experience from an educational point of view.

    In the first part, I want people to learn what a ‘lump’ in the breast feels like. I kind of wish more residents were involved in my care at Stanford – more people taking an interest and learning from my experience. I had no idea what a cancerous lump felt like, even when it happened to me. I recall in a health education class the nurse bringing in a mannequin breast that had a lump in it, to give us a sense of what a lump felt like. I also remember never being able to feel that lump. I remember feeling my young breasts as a teenager and wondering if everything I felt was a lump – as I had pretty lumpy breasts (not a lot of fatty breast tissue back then – perhaps they taught the class a little too early for me!).

    This links me directly to a charity that Sarah Outen supports on her round-the-world human powered journey. I’ve been following Sarah’s journey since it began a couple of years ago. One of the charities she is fundraising for is called “Coppafeel“, and it is about awareness for breast cancer in young women. The idea is to get women used to the habit of checking their breast every time they get in the shower. They will even sent you reminders if you sign up. I actually don’t recall where or when I picked that habit up, but I know that I did. I was never good at the laying down in bed and checking once a month, but I did form the habit of inspecting my breasts every time I got in the shower. That is how I knew that something had changed – that after my bike ride June 1st there was a mass there that had not been there before. I didn’t realize at the time that it was cancer – I thought that after the somewhat rough bike ride (a lot was on dirt path) that perhaps I had strained something – although it wasn’t sore, it was just solid. One thing I really want to point out here, is that it isn’t necessarily about feeling a ‘lump’, rather it is about noticing a change. In young women (under 45) most breast cancers are found through self-examination – you feel something has changed.

    What a lot of people don’t realize is that although you are at increased risk for breast cancer if an immediate family member has had it, “about 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations.”(http://www.breastcancer.org/symptoms/understand_bc/statistics). So, although there is a lot of press about the hereditary breast cancers, for the majority of women, it is a completely unexpected thing that happens. In some ways, the press about hereditary cancers hinders things like screening, as women think that because no one in their family has had it, then it couldn’t happen to them. I certainly thought that. Breast cancer was never something that I was even remotely concerned about (although I still inspected my boobs every time I got in the shower, cause, why not?).

    So, all you women out there, get in the habit (especially if you are too young for routine mammograms) … every time you jump in the shower, coppafeel!

  • Breast surgery

    I am coming to appreciate the roles of the different surgeons. I have not yet met with a plastic surgeon (PS), but will probably set that appointment up in the next few weeks just to get the conversation started. With breast cancer in the US, you are usually dealing with at least two surgeries. The first surgery is done by the breast surgeon (BS). This surgeon specializes in removing the cancer. You can have either a mastectomy (where they remove the entire breast) or a lumpectomy (where they just remove the cancer). That is an overly simplified explanation – as both surgeries depend on what you plan to do after – that is the reconstruction or no reconstruction. The two surgeons work together to help give you the look you want post-surgery. Some of the choices your breast surgeon makes depends directly on what you want the final outcome to be.

    So, it occurs to me after looking at several pictures of not too nice results post mastectomy/lumpectomy surgery, that I want a plastic surgeon that has experience doing trans female-male top surgery. You see, if the plastic surgeon knows how to do trans surgery well, then they would appreciate the importance of appearance. And if they have experience with female-male trans surgery then they would get what it means to be flat. I’m surprise to realize that appearance matters to me. I want to look good naked … I’m OK with being flat – not having breasts – so I don’t think reconstruction makes sense for me (at least that is my current thinking) – but I do want to look good naked. I want to be able to look at myself in the mirror and be proud of what I see (rather than sad). I’ve been warned never to look down … the downward view of your breasts is the view the only you see, and it will never be the same … everyone else sees the outward view!

    One thing that I find very interesting in this process is that I have a greatly improved body image. I would not have expected that result. I’m a lot less vain now – and a lot less worried about my other lumps and bumps – but I do want to be able to go topless. I don’t want to have to feel like I need to cover up because I have odd disfigured lumps and bumps where my breasts used to be.

    I’m reminded of my early days when one breast started growing before the other (midway through grade six if I recall correctly). I found myself wearing training bras because I did not want to look lopsided – I always used one of the stalls to change in PE class, cause I didn’t want the other girls to notice that I was lopsided. Now, I find myself wanting to be the poster child for women with mastectomy who choose not to reconstruct – I want to model swim suits for real women. A few months ago, I supported a Kickstarter campaign for Nettle’s Tale swimwear. I bought a swimsuit but never got around to sending them my sizing information (couldn’t find the measuring tape in my Ottawa apartment). After diagnose I reached out to the folks at Nettles Tale as I cannot give measurements now and I’m also not sure whether the suit I picked will work!  I threw out the idea to the folks at Nettle’s Tale swimwear of modeling for them as they are hoping to come out with a new line of swimsuits that support prosthetic boobs. They were excited about the idea, but of course nothing is planned yet (I don’t live in Vancouver, which poses a challenge, but also it will be a year before I’d be ready anyways) – but I thought I’d share that I am serious when I say that I want to be a swimsuit model when this is all done!

    I learned a new word the other day – foobs – which is short for fake boobs. I had heard falsies before, but foobs was new to me. Today I learned that the best place to buy a variety of foobs is eBay. Buying new can be rather expensive (eventually I’ll need to see what my insurance will cover). Since both the breast cancer and the trans community use them, there is a market for lightly used foobs. You learn something new every day!

  • They say …

    not to read too much on the Internet, and yet it is the internet that is helping ensure I am better prepared for chemo. There are a few things no one mentioned to me, that I’m now finding out:

    • You should go to the dentist and get your teeth cleaned prior to chemo. You should not have teeth cleaning during chemo as there is a risk of infection, but also chemo can cause mouth sores, which makes a dental cleaning that much more difficult. So, I found a dentist and had my teeth cleaned last week.
    • I’m now seeing that I might need a shingles vaccine. I think this is a live vaccine, so cannot be given during chemo. I might already be too late (t minus 1 week).

    I have no idea what else I’m missing … but the best bit of advice I’ve had so far is to take some time off before going into treatment. We are still planning to head up to Yosemite on Monday after my ultrasound – but we are opting for a hotel rather than a campsite. I need to know that I have access to showers, so my port incisions don’t get infected. Although it is not the same as camping, it will still be nice to spend some time hiking and meditating in nature.

  • The Power Port or Dignity Port

    So, I had my port installed yesterday. The interventional radiologist that installed it told me he was installing a Power Port, but the package they gave me calls it a Dignity port – so now I don’t know what kind of port they actually installed! I’ll have to make a phone call over to interventional radiology (IR) when their office opens to get clarification (it is completely under the skin, so I cannot see it). Looking on the Internet, they are different things. I kind of like the PowerPort better just for the name. When he said it was a PowerPort (rather than mediport), I thought immediately of the Power Rangers, and thought myself a super hero. I kind of like the idea that I’ve had super powers installed – as I think I’ll need them as the weeks progress!

    I’ve heard from several others on chemo that it was a good decision to just get the port. The idea is that with the port, they don’t need to find a vein each time they need to draw blood or give treatment. Given how difficult it is for them to draw blood from me under ideal circumstances, this was actually a pretty easy decision for me.

    The procedure itself went well. It wasn’t at all the same kind of sedation as cataract surgery, though they called it the same thing. I was pretty much high as a kite blabbing away to the drug dealer (nurse who gives the drugs). He said he visited Canada and asked about the unique Canadian food. It took me a minute, then I realized he was talking about poutine! It is funny because we see poutine on some menus here (they try and make if fancy with spicy gravy and totally do it wrong), and it is associated with Canada – where I’ve always associated it with Quebec. Somehow we managed to talk about poutine for half an hour while the surgery was being done. Again, I was pretty loopy and talkative, and what I remember most is that my mouth was pretty dry from talking too much after not having had anything to eat or drink since the night before.

    Immediately after surgery they offered me food (I was starving) and a drink. I think I ate more yesterday than I’ve eaten for weeks!

    With all else that was going on, I also managed to slip in a teeth cleaning yesterday. I had seen the dentist back in March in Ottawa, so it wasn’t strictly necessary – but I read somewhere that it is recommended to do it before chemo. You cannot do it during chemo, as you have an increased risk of infection and one of the potential side effects is mouth sores. So, that was one more task off the pre-chemo checklist. We liked the dentist, so that too is one more relocation task accomplished.

    We are hoping to get a few days off of everything next week. Scott had booked vacation over a month ago (pre cancer diagnosis), and we have a campsite booked at Yosemite Monday – Friday. We won’t stay that long, but it would be nice to go up for a couple of nights. I haven’t been to Yosemite yet (its about a 4 hour drive from here), and I’d love the opportunity to spend a couple or few days in nature forgetting about the last few weeks (decompressing) and mentally preparing for the months ahead.

     

  • Slash, Burn, Poison, and Starve

    A new friend commented to me that the treatments for cancer were to slash, burn, and/or poison. It bugs me that the most effective treatment and first choice is always to ‘cut it out’. I’ve added starve to the list for breast cancer, as that is one of the more effective treatments if you have positive receptors.

    Slash refers to surgery. It is often the first line of defense – just cut it out. For many women with small slow growing tumors, this is the only treatment required.

    Burn refers to radiation. Radiation is another localized treatment. If there is a risk of the cancer spreading locally (usually goes with the lumpectomy choice of surgery rather than mastectomy, where the surgeon cannot alway tell whether they ‘got it all’) then radiation is used to burn away any cancer cells that might remain.

    Poison refers to chemo. Chemo is a systemic treatment and affects your entire body. The reason you do chemo is to try to make sure that all cancer cells in your body are killed. If there are any cells floating around, you want to make sure they have been killed.

    Starve refers to hormone therapy. I’ve added this one to the list. If your cancer is hormone positive (80% of breast cancer is), then what is known is that the cancer feeds on Estrogen or Progesterone or both. So, once the slash/burn/poison treatments are complete you move on to starvation treatment that suppresses your bodies ability to produce the hormones that the cancer feeds on.

    One challenge many women face is with the starvation therapies. People often see the ‘treatment’ as finished after slash/burn/poison, and don’t realize longer duration effects of the hormone therapy. The duration of the hormone therapy keeps changing. They are back up to recommending 10-years of tamoxifin for pre-menopausal women (this had been reduced to 5 years at one point). Treatment doesn’t end just because you are not visiting the hospital once a week for an infusion. It becomes a silent pill that you take every day for 10-years, all along praying that the cancer doesn’t return.

    I’m not ready to contemplate the 10 years of treatment. I’m not ready to think beyond the first cycle – which for me will be poison. I’m too afraid of the spread. Doing surgery first would have meant a 4-6 week delay in the start of chemo – that is a 4-6 week opportunity for the cancer to spread.

  • 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!

  • 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.
    Photo & Video Sharing by SmugMug

    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!

  • My quantified and qualified self

    I started writing this post a few days ago, but never found the time to finish it. Today is a day off of doctors appointments, although I am expecting a call from the oncologist (onc) at PAMF regarding the results the tumor board there.

    Let me start by saying I’m a mixed-methods researcher. That is, that when I do research, I look at both qualitative and quantitative data, as both help to provided a complete picture. With this blog, I have mostly been dealing with what I call my qualified self – that is my feeling and my perceptions of the world. When I think about my quantified self, I’m thinking about the numbers – what’s my current weight, what are the letters that represent my diagnosis, what are my various counts, etc.

    The increase of mobile and now wearable technology has spawned a whole movement known as the quantified self. Scott actually attended a meet-up with people regarding the quantified self. For a few years now, we have been quantifying ourselves by having a scale that connects via wifi to the Internet and reports our weight and body fat measures. This information is nicely graphed for us. One thing this has provided is a clear picture of when I started to lose weight – June 2nd. Without the automatically measuring scale, I would not have been able to so clearly see the progression.

    June 1st was the first time I notice that something wasn’t the same with my left breast. I panicked a little at first, but then told myself it was nothing – of no concern. I convinced myself for a full week that it was nothing. Then on June 9th I went to see my family doctors … and that is when my life began to change.

    Another area where I measure my quantified self is when I bike. I mostly like to track time rather than distance, because really, it is the length of time on the bike that matters most. For this I use an app on my phone called Runkeeper. One advantage to tracking my quantified self is that it provides me with motivation. When I started to write this post, I wanted to report on my bike ride, but I had not done one that day. That gave me the motivation I needed to get out, when I wasn’t really feeling like it – I had the strength, just wasn’t in the mood. Of course, once I got out on the bike I was very glad to be out riding.

    Today, I don’t have any appointments (at least not right now). I’m going to try another attempt at Mount Hamilton from the Fire Station. Last time I tried it I rode 15 km (exactly half was up hill). That was June 10 – the day after the appointment with my primary care doctor, and two days before diagnosis. Today, I’m going to try the same ride, with my folding bike (I find it a little easier to climb on my foldy – plus my road bike is in the shop for a service). It takes about an hour to drive up to the fire station. One really nice thing about this ride is that there is very little traffic during the week. I usually get passed by two or three cars in the hour and half that I’m riding … although I suspect today might be a two hour ride – I’m going to try to make it …

    Photo & Video Sharing by SmugMug

    When I go to the doctors, I see mostly my quantified self. I am the numbers that are represented by the pathology. However, the doctors actually don’t seem to see me that way. In many ways, they actually seem to be more about the qualified self – they are asking me to make decisions based upon how I feel and what is right for me. They aren’t focusing on the quantified self – at least not yet – now, if I end up in a clinical trial, I expect that will become much more quantified!

    This whole clinical trial thing is interesting. There is so much research going on around breast cancer treatments, that there is guaranteed to be one aspect or another of my treatment that is associated with some trial or another (my surgeon wants to add a tattoo to my nodes if they don’t have cancer). In some ways, I don’t want to be in too much of a trial, as that limits things. For example, if I’m on a chemo regime as a part of a clinical trial, then all my tests and such need to be done at Stanford. I cannot get a portion of my care at the closer PAMF. If I’m not in a trial, then I could, for example, go to PAFM for radiology – which is nice, because the one thing I did like them most at PAFM is their radiology department. Potentially, I could go to PAFM for chemo treatments – even though the onc is at Stanford. It is good to know that the option is there.

    And now I need to make breakfast … fuel for the bike ride later today.

  • 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 …

     

  • A typo and an update

    Sorry, I clearly need to do a better job proof reading … I don’t have enough information yet to be talking about stages. Stage is a measure of the progression of the disease, and more needs to be known. I’m guessing stage 2 based on the size of the tumor on the left breast, but that hasn’t been confirmed yet.

    I did have confirmation that I have cancer in both breasts – so both breasts are grade 3 invasive ductal carcinoma (IDC) – which I shall now refer to as IDC cause the other is too hard to type.

    I am awaiting (numb to feelings at the moment) the results on the receptors. I’m hoping for a positive on something at this point, as the receptors tell the oncologists which types of chemotherapy work.

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