BC Becky

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

Tag: preparations

  • I’m ready

    I am so ready to make the transition from someone with breast cancer to someone fighting breast cancer. Tomorrow morning, bright and early, I begin chemotherapy – assuming the heart ultrasound and blood tests say I’m healthy. Ironic (in an Alanis Morissette kinda way), the idea of being in ‘excellent health’ and having cancer at the same time.

    I’ve got everything laid out for my ‘cancer’ bag – that is the bag I bring with me when I go up to Stanford for the day. I received it from BC Connections, a local Breast Cancer support organizations. It has proven to be very handy (both the bag and the organization itself, as this is where I go to support group on Saturday afternoons). I have even chosen my clothing for the day. I bought a new t-shirt that has a low neck line so that my port is easily accessible. I’ve included:

    • A nice warm blanket/wrap that I received from the Three Willows church where my in-laws go (thank-you).
    • A scarf that I received from my friend Maha in Egypt (thank-you).
    • Care squares that came from a family friend (thank-you).
    • A teddy bear that Scott brought me when I was in the hospital for surgery before we were married (with the Canadian connection Hudson Bay sweater).
    • Some snacks and electrolyte mixes to add to my water bottle.
    • My cancer treatment binder, which includes a bunch a cards and the caring card I received from the Ottawa First Unitarian Congregation (thank-you), the card my mom sent with a hope rock on it, and various post cards sent from distant friends (thank-you).
    • Headphones, so I can watch TV or listen to music or podcasts. I have a collection of Vinyl Cafe Stories and Under the Influence podcasts preloaded on my iPhone.

    2014-07-06 07.03.36I hope I’m not forgetting anything. I will also bring both my laptop, my iPad, and iPhone. I have no idea what I’m going to feel like doing during chemo. Scott will be there to help lug my stuff – bringing both the laptop and iPad seems a little redundant, but if I am in the mood for any serious writing (beyond blogging), my laptop has scrivener on it. Plus my laptop let’s me watch TV shows from Canadian networks, which I cannot do on my iPad.

    I’d also like to thank John and especially Alison for the lovely quilt they sent. BC Connections had quilts for anyone going through chemo but I chose not to take one, as I see so many other women that need it more than I do. The following Monday, I received a lovely quilt from Alison and John in the mail. It has turned out to be perfect for our bed, as our down duvet was too warm for this time of year, but going with a just a duvet cover wasn’t warm enough – we were having trouble finding just the right balance, and the quilt is proving to be just that.

    Everything that I’ve read so far about chemo side effects says that it varies by the person. I’ll either be tired for the first few days or overly energetic for the first few days and then tired towards the end of the cycle. If you know me, you know that I like to plan things. This whole uncertainty over how I will react is driving me crazy. I just need to know if I’ll be able to get some work done for a few days here and there or not.

    Since diagnosis, my life has been pretty focused around improving my health (lots of long bike rides and long walks); enjoying myself (sailing, going to Yosemite for a couple of days; various medical tests, scans and appointments; and learning a whole lot about breast cancer in general, and specifically about the treatment options for the type of cancer that I have. I have put all my contract work on hold (fortunately, that was possible). I’m now starting to go stir crazy, and hope to get back to some of that work – however, I just don’t know how I will react to chemo, so I’m afraid to jump into anything right now. So the wait game continues … today I wait … I’m going to go for a swim, go out to the market (now that my stomach is sorted, we need some food in the house – although chemo may change that too), and maybe even go for a bike ride.

     

     

  • 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 Cactus Garden

    Today was mostly a quiet day, with a great visit from a friend, and a quick trip up to Stanford for an EKG (baseline prior to chemo). Since I arrived early, they seem to have a habit of telling me my appointments are 20-30 minutes before they actually schedule the appointment, I took the extra half hour to take a closer look at the cactus garden. Just before the garden, there are a bunch of trees that have been relocated into giant transplant containers. They are building a new hospital, so there is construction everywhere. Apparently, they try to save a lot of the trees during construction, and replant them when the buildings are finished.

    2014-06-27 14.33.59

    I find it interesting that Royal Roads University has a rose garden, and Stanford University has a cactus garden.

    2014-06-27 14.42.34 2014-06-27 14.41.37 2014-06-27 14.41.27 2014-06-27 14.38.06 2014-06-27 14.37.42 2014-06-27 14.37.37 2014-06-27 14.37.09And of course the requisite selfie in front of my tree :-), I notice that it is starting to loose a little more of its bark. Thanks Maha for the lovely scarves – this one does a great job hiding my port incision.
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  • 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.

     

  • 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.

  • 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.

  • 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.

     

  • The role of fate in my life

    Although I don’t believe in a god per se, I do believe in some form of fate. Throughout our bicycle journey (http://goingeast.ca/blog) we often felt that something was looking out for us. When I started my PhD, I reflected on fate here.

    I think that fate played a role in helping me be prepared for the challenges that lie ahead. Fate directed me towards the PhD program, where I ended up working with the Department of Family Medicine (DFM). Without this, I never would have found myself working in medical education. The last three years working with DFM has meant that I have developed a much deeper understanding for how medical education works, how some aspects of medical research work (e.g. I know what implementation research is), and how medicine is practiced in an academic setting (even the difference between a community and academic setting). These all have proven to be very valuable, as I learn to navigate the American health care system. I also now have friends who are physicians, and they have been a great support.

    The PhD program also helped me discover myself as a blogger. It helped me create a wide reaching social network (really several networks) – which I am very grateful for. When I first heard that I had cancer, I had people that I could reach out to – friends who put me in touch with other friends – all helping to form a network of support. It is at these times of crisis that we discover the true power of being part of networked communities.

    Thank-you everyone for your supporting words. When we were on our bike trip, we learned to ask for what we needed – it was not an easy thing, as it isn’t normal in our culture. I wrote about hospitality and permitting others to help us on our journey. To that end, a small help that you could provide on my journey would be to send a postcard, at some point over the next year (not all at once please) – something random at some random time. A postcard with a smily face, a poem, or a joke. Getting a small thing in the mail will put a smile on my face. I’m not sure I want to post our address here – so email/facetime/twitter me and I’ll provide it. Thanks.

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