Category: Emotional Journey

It was another beautiful day in Northern California (highs in the mid 20s) – I was biking in shorts :-). At one point, I noticed the great white egret sleeping by the banks of the Guadalupe River. With the green grasses, the white feathers provide a dramatic contrast, which is not nearly as impressive when everything is dried out and brown during the summer months.

This was my first post-surgery ride on my road bike. Actually, the last time I rode this particular bike, I had a bit of an adventure that required the replacement of my rear rim – Looking back, that was September 10, 2014 – the day after my first report of taxol induced neuropathy. So, it was nice to finally get back on the bike. I was immediately struck by how much higher off the ground I am on this bike. It is certainly my tallest bike. It is also my lightest bike, so I ride much faster than my other bikes, and riding it is a lot less physical work – however, it does involve more pressure on my upper body.

Towards the end of my ride, I decided to stop and take a selfie. I realized that it has has been a long time since I’ve taken a selfie for this blog. Unfortunately, you cannot see how long my hair is because I bike with a helmet. In addition to the fancy new back tire, I also had new pedals – which were perhaps a little tighter on the clip release than I am accustomed. This resulted in a slow motion, almost comical, fall. I slowed to a stop, clipping out my right food as I slowed, but then leaned to the left. By the time I realized my foot was still in the cleat, I was already on my way down. I landed rather solidly on my elbow.

After a few breaths, I realized that I was not seriously hurt. Unlike when my back rim failed, this time, there seem to be no body around – so no one came to help me get up off the ground. I ended up kicking out my bike (my foot came off the cleat on the way down, just not soon enough to stop the fall). I was impressed at my ability to get myself up off the ground – certainly an improvement over a few weeks ago. I expect that tomorrow my arm and left side might be a little tender and I’ll probably have a nice bruise on my left quad, but hopefully I’ll recover from this one quickly. The road bike is now safely put away on the wall were it will likely stay for a week or two, until I get the courage to try it out again. After falling, I did pick myself up, take the selfie, and then rode the short distance home (under 1km). Of course, this now means every time I see a doctor in the next month, when they ask “have you fallen in the last 30 days?”, I’ll have to explain how I fell off my bike 🙁

So over the last couple of weeks I’ve managed to get myself all worked up (and overly worried). I didn’t think much of it at first, maybe just a muscle strain under my left collar bone. No big deal. Then I noticed at the gym that I was a little weaker on the left side, and the tenderness in the area didn’t go away. As the days passed, things became quickly reminiscent of my initial lump, which I had initially dismissed as a muscle strain (close to the same location, same hardness). My logical brain was telling me I was overreacting, but my lizard brain was dealing with fear. I was catatrophizing. Not good. It stressed me out to the point that I emailed my oncologist early this afternoon asking about moving my appointment up from Thursday to Monday. Since I was seeing my plastic surgeon today anyways, I figured I might as well ask her.

So, first she (my plastic surgeon) dealt with my ugly belly wound (http://dttocs.smugmug.com/photos/i-fQL9VTF/0/M/i-fQL9VTF-M.jpg). I have some infection on my skin. Nothing too serious, but it needs a dose of oral antibiotics (ugh). We are going back to wet-to-dry dressing changes, which the nurse did a good job demonstrating. Once the infection clears, we’ll try the SnAP again, but until it clears the wound needs to stay open so the infection can clear out. I see the surgeon again next week for a wound check but also for the pre-op appointment. Even if the wound doesn’t heal, it won’t affect the next surgery. So either way, all is well on that front.

After that, it was time to look at the breast wound. Before she looked at it, I asked her about the hard area under my collar bone (above my breast). She felt it and said immediately “oh, that’s just a stitch, nothing to worry about”. As she was explaining how some of the stitches dissolve at different times, I burst into tears – tears of relief! I had gotten myself so worked up about it. I was so afraid that the cancer was back, that even as I write this I cry. I feel completely drained, but I also feel like a huge weight has been lifted. Now, hopefully, tomorrow I shall wake up feeling refreshed and without this darn head cold!

I have been very worried the last couple of weeks. It is almost to the level of pre-occupation. I am feeling more energy, and generally feeling better than I have since the beginning of chemotherapy. I’m pretty certain my blood levels have returned to normal. But I am worried. With every ache or pain, I worry – has it come back? I try to dismiss it as ‘normal’ but in reality, it is perhaps not normal. The worry may be a little too much. Fortunately, I see my oncologist next week, and will find out if my worry is for naught.

When I worry about the future, I start to plan things. On a chance, I looked up whether or not I could use points to fly to Ottawa in May and also make a visit to Vancouver on the same trip. Aeroplan being on my side for once, indeed I could. So, I made plans. I booked the flight. Almost a year to the day, I’ll be back in Ottawa for just under a week. It coincides with the Canadian Unitarian Council’s Annual Conference and Meeting, which means that I’ll be able to see my Unitarian friends from across Canada. The trip was made that much easier by another friend who offered me her guest room for the duration of my trip (even though she isn’t in town when I arrive). How awesome is that.

I also found out yesterday that I have been accepted for the Casting for Recovery weekend fly fishing retreat in April. I LOVE fishing, but I’ve never done fly fishing. I’ve also never done catch-and-release fishing – I’ve always fished for food. So, this is a unique experience that also is an ethical dilemma for me.

Passing my feeds today is a New York Times article by Oliver Sacks learning that he has terminal cancer. Friends have commented that it is sad and yet he is brave. In my mind, I can only say that he is lucky to have lived to 80. Too many of the young women in my world are in their 40s and have metastatic breast cancer. They have been given the terminal diagnosis in their early 40s. It is for them that I am sad, not for someone who has lived a good life of 80 years. Heck, he may have terminal cancer and still die from something else!

Today, we head up to UCSF so that I can participate in part 1 of a neuropathy study. This part is seeking to better describe chemotherapy (taxane specific) induced neuropathy, and to see if there are any genetic markers that would help predict who does and does not get neuropathy. After that, it is my semi-weekly visit to the Advanced Wound Care Center. My belly wound is about 1/2 the size it was when I had the Snap installed a week ago. Unfortunately, the adhesives caused blistering on my skin and I had to remove it Tuesday night. Upon removing it, I noticed a not so pleasant smell – which seems to be coming from the wound. I’ve been packing it with Aquacel Ag (a special antimicrobial absorbent packing material with silver in it). I’ll find out today what the next steps are – hopefully something that will continue to help it heal. Surgery to fix it is booked for March 17th.

So, I’m worried about cancer coming back. I’m worried about infection in my wounds. But, I’m being adequately distracted with the visit to UCSF and other things to keep me busy.

As I physically recover from chemo and surgery, I find myself back at the beginning – that is back at that place pre-treatment where I struggled to focus on any one particular task. I have a list a mile long of things I want to do, but I don’t seem to have the ability to focus. I have a whole new respect for one of my colleagues in the PhD program who started her PhD a few months after cancer treatment. I cannot imagine navigating through epistemologies with chemo brain!

It is amazingly difficult to read academic articles. The topics are interesting and the articles are said to be “easy” to read articles, but still, my focus just isn’t there yet. I cannot seem to sit for more than 10 minutes unless I’m writing – for some reason, blogging is something I can do for longer stretches of time. Perhaps that is because it is something I never stopped doing?

So, for now, I’m operating in triage mode. I’m doing the things that are most urgent and need to get done. I’m using deadlines to drive what I do. I know, some people operate like this every day. I didn’t used to. I was always the pro-active one – the one that got the assignment done or paper written the week before it was due. I handed things in early. That was me. But right now, I’m just holding my head up above the water to get done what must be done and not a whole lot extra!

One of the projects that is currently using up my limited free time is a free online course that I’m building titled  “Should I blog? Everything you want to know about blogging your cancer journey“. I have always wanted to be the facilitator for a free online course, and I realized that the only thing stopping me from doing it was me. And so, if you want to start blogging but don’t know how to get started, feel free to join us. The course begins March 1st and the signup and course content will all be posted to http://shouldiblog.org. 

In preparing the content for the first week, I asked a bunch of volunteer cancer bloggers (cancer blog mentors) why they blogged. I realized that I had not posted why I blog. Sure, I say a little about it on the landing page for this site, but really, I wanted to take some time (and this post) to really reflect on not just why I blog, but why I blog as much as I do.

I began blogging in the first few days after diagnosis. At that time, it was too hard to say the words. As I mentioned earlier this week, the hardest thing I had to do was phone my mother and say the words “I have breast cancer”. I just couldn’t talk about it. I was not ready for telephone conversations, but my family and friends needed to know what was happening. I also had at the back of my mind, that my blog could serve as useful data for research. Maybe even a new dissertation topic for me, as my thesis research project couldn’t survive me not being in Ottawa to keep it going. I wanted my experience to be meaningful. It didn’t make sense for me to go through this journey without somehow sharing the experience so that others could learn from it.

I also had a compulsion to write. I still have that compulsion. It is my therapy. It is how I process my thoughts and ideas. But for me, writing has always needed an audience. I’ve never been able to simply write for the sake of writing. I’ve always needed to write for someone – or write to teach someone. I was a technical writer before I was a blogger. Again, my writing was always meant to be shared with people.

I remember the first couple of days after diagnosis, before I started blogging. I remember all the ideas that were popping into my head – all the great blog post titles – and the frustration that I had at not sharing them. Not getting them out of my head and onto the page. I needed to blog.

When I wasn’t feeling well, and when I was struggling, I reminded myself that my blog served as a testimonial about my experience. It was important to me that I wrote something, even when I didn’t want to. If I am to use the information in research, it is important that I have an accurate account of my experience. So, I used that as motivation to keep writing even when I didn’t feel like it. Throughout treatment, blogging and exercise became my full time job.  This is turning out to be useful for a clinical trial I’m participating in, as my blog provides a more accurate reflection of when I started to feel symptoms of neuropathy. So, even if it isn’t useful in my personal research, it is useful in research that I’m participating in.

As a blogger, I am flattered when someone leaves a comment on my blog about how my blog has helped them, or if they share a Facebook comment about my post. This helps keep me motivated. It helps me know that there is value in my writing beyond my personal therapy. I’ve had many people also comment to me that my blog has helped them better understand what it means to experience breast cancer. I’ve had many people who have breast cancer tell me that my blog has helped them to process their journey. So I keep writing, not only because I have to, but also because people encourage me to keep doing it.