Category: active treatment

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.
I 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.
Sun July 6, 2014
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!

Sat July 5, 2014
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!

Thu July 3, 2014
A pre-treatment trip

One of the bits of advice I received was to try and get away before you start treatment. Both Scott and I needed a couple of days to enjoy ourselves and enjoy nature. Since we already had plans to head up to Yosemite, we decide that we would modify our plans slightly and still go up. We left early on Tuesday morning and spent the night at the historic Wawona Hotel. This allowed us to spend two days hiking and biking around Yosemite.

On the drive up, we stopped briefly at the Don Pedro Reservoir. It reminded me very much of the Dead Sea from our Going East adventure. I’m finding that a lot of things are reminding me of various aspects of our Going East adventure.

My favourite selfie of the trip. The giant sequoia in the background had branches that were 7 feet thick – thicker than any non-sequoia tree in the park. It was amazing to see. I was also struck but how different the sequoias are from the giant redwoods in Big Basin.

We took a lot of photos, so I’ve put them in a gallery for anyone interested in seeing them.

We now have a few days to prep the apartment, go sailing, and biking before chemo starts on Monday. I’m feeling ready for it now – much more ready than I was even a few days ago.

Thu July 3, 2014
Nature has more beauty

Someone in one of my networks commented that after diagnosis, nature has more beauty. That suddenly you are more aware of the beauty that surrounds you. I’ve definitely noticed that when I go out riding or walking. I’m finding the bike path behind our place particularly beautiful these days.

Today, rather than riding (it was a hot day here), we waited until it started to cool off and went for a nice long walk (dug out the pedometer – 7500 steps). When we ride up on the path we noticed a natural area between the path and the street. Today we walked through that area. Many of the plants are labelled and there are several information plaques throughout. Apparently, it is the last “forest” area in Santa Clara. Santa Clara is bordered by the San Francisco Bay in the north and cities on all other sides (Milpitas, San Jose, Sunnyvale, Cupertino, Campbell, etc).

We came across a grove of old eucalyptus trees. In this photo you can see the different phases of their life cycle – shedding layers of old bark to allow the new growth. Every time I see this I think, that is soon to be me, shedding my hair, nails, and other fast growing body parts (and tumors), to allow for new healthy growth. I am very curious what colour my new hair will be!

Walking back along the path, with heightened senses I noticed a family of snails on the shrubs that bordered the path. After noticing the first bunch, we realized that there were families of snails on the shrubs all along the path. We have walked this path several times and never noticed them before. Of course, my heightened senses might also be attributable to my new glasses, that let me actually see clearly at that distance – but still – I’m sure there is also an aspect of the cancer that I can attribute to this perception.

Tue July 1, 2014
Scrapbooking

I saw a Facebook post from a friend the other day about scrapbooking. It isn’t something I’ve wanted to do before – what on earth would I do with a scrapbook once it was done. But now, I’m receiving so many wonderful post cards and other such beautiful ‘thinking of you’ that my cancer binder is filling up (I have a binder that they use to chemo treatments and reactions, where I started to put the various cards and letters).

I know nothing of scrapbooking, so I decided to Google it. Apparently, cancer scrapbooking is quite common – it is a way to trace your journey and give it a life of its own. There are many different layout suggestions, but these are focused mostly on a way to capture your journey – which I’m already doing in this blog.

So friends who are scrapbookers, any recommendations for a good starter-kit or must-have items? I don’t really want more stuff (we have a small apartments and are constantly looking for way to remove stuff not add it). The purpose of the scrapbook is mostly to help keep track of all the wonderful gifts I’m receiving and the various warm thoughts – it is is more of a ‘we are thinking of you’ scrapbook rather than a cancer book per se. Most of my journey itself will be posted on the blog (with lots of photos) and my quantified medical self is tracked in my cancer binder already.

Mon June 30, 2014
T-shirts

When I was young I remember a T-shirt my mother used to wear that said “Don’t stare, grow your own” … A friend emailed me about a friend going through chemo who had a T-shirt “Like breasts? You can have mine, they are killing me!” Morbid but funny.

I find myself wanting a new jersey for biking. One that says something like “I bike to survive … ” or something like that … cause really, I bike to stay sane, and when I start going through chemo and doing crazy things like trying to bike Mount Hamilton during chemo (cause I wanna), then I need all the support from passing cyclists I can get!

I should also make a shout-out to a friend from our Going East tour – Jim is a real inspiration for me. When he was diagnosed as HIV positive back in the 80s (when so little was known about HIV/AIDS) he hopped on his bicycle and went on tour. He attributed his riding to his survival. Every time I get on my bike to ride now, I am reminded of our brief visit with him.

Sun June 29, 2014
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.
Sun June 29, 2014
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.

Sun June 29, 2014
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.

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

And 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.

Sat June 28, 2014