Category: recovery

In my ‘new normal’, I here by declare that all Fridays will be mental health days. For me, this means that I will prioritize things that improve my mental health on Fridays. I will avoid doctors appointments and treatment appointments that are not directly related to improving my mental health. Just as I make exercise a priority in my day-to-day life, I will make mental health a priority on Fridays.

For me, making mental health a priority means taking the time for a longer bike ride (whenever I am able). It means taking the day off of work to visit with friends or to go camping for the weekend. Some Fridays it means visiting my therapist, as I start some cognitive behavior therapy so that I don’t feel that every pain is a recurrence and go down the spiral that was my crisis last week.

This doesn’t mean I’m not working on Fridays – as sometimes working is exactly what I need to be doing to improve my mental health. It just means that when I decide what I shall be doing on a given Friday, I shall do that with a mindful intention of improving my mental health – whatever that happens to look like at the time.

So, from now on, for me, Fridays are my mental health days!

Yesterday, I gave a talk relating to my upcoming free online course – Should I blog? In it, I introduced myself as a breast cancer survivor/warrior. One of the participants challenged that language – preferring the use of the term ‘thriver’ rather than ‘survivor’.

In deciding how to introduce myself, I was fully aware of the ‘thriver’ term, but not yet comfortable with it. You see, ‘thriver’ does have a bit of the connotation of ‘cancer as a gift’ which is an idea that I both despise and feel guilt over (I blogged about my feeling of guilt). For me to be a ‘thriver’, I need to take what I have learned from my breast cancer journey and internalize it in my new way of living — my new way of understanding who I am — I need to finish re-claiming my professional and academic identities, before I can call myself a ‘thriver’.

To me, the term ‘thriver’ represents something that I am striving for. It represents the ‘new normal’, post-cancer Becky, that I have not yet achieved. I may no longer ‘have’ breast cancer, but I am still recovering from the multiple assaults to my system that was breast cancer treatment. I am still fighting to identify as a ‘survivor’. I think I need to finish processing who I am as a breast cancer survivor before I can move on to being a breast cancer ‘thriver’. One day, I hope to use that term to identify myself, I’m just not there yet.

Yesterday was a turning point in my journey towards wellness. I pushed outside of my current comfort zone and drove up to Berkeley to attend an academic conference. It was located at the conference center, which inside was rather dreary, but had a tulip tree in bloom in the sunny outdoor quad (thought I’d taken a picture, but I don’t seem to have it).

On the drive up, I had an ah-ha moment. It came to me how I might be able to pull together a dissertation based upon my research. I don’t know yet if it will work, but it is encouraging to be thinking along those lines again. It is also encouraging to see a path that gets me to the finish line.

My poster presentation went well. I got a chance to talk about my research giving 5 or 6 5-10 minute presentation. I also survived standing on my feet for the full hour!

During the conference sessions, I was fully aware of my current disabilities. I couldn’t just get up and move between rooms if the session was not interesting. I was physically not able to get up without significant effort. I move more like a 90 year old women, than one of my meagre 44 years. This is not obvious to anyone who sees me – at least not obvious until I try to maneuver myself out of a chair. Then a keen observer will notice my slow movements and my facial expressions as I take the first couple of painful steps (after the first couple of steps the pain eases as I get used to it and my joints unstiffen). The conference also involved climbing a set of stairs. After the session, I was walking down the stairs during the rush between sessions. Again, this is when it become clear that I don’t move like I used to. Going down stairs is a much slower process, and people had to pass me or wait patiently behind me.

Conferences aren’t great at appreciating the difficulties one might have with moving around. They also often have standing room only receptions. These are great for those who can move around freely on their feet, but this poses an extra challenge for me in my current condition.

One interesting part happened when someone said they knew me from an online space. I was immediately struck with the ‘how do I answer that’? Up until that point, no one mentioned cancer. No one had any sign that I was someone who had been through breast cancer (unless they recognized my chemo-hair – but no one indicated anything about it). She mentioned that she knew me from a MOOC space, so I listed the MOOCs I’ve been most recently in – treading lightly on the cancer subject – I mentioned the Patient Engagement MOOC and MedX – she said no. Then I mentioned Rhizo (a MOOC on rhizomatic learning that started last January and has resulted in an ongoing community of inquiry). Sigh! She knows me from rhizo, which means she may know of my breast cancer journey, but more likely knows me in a more academic context. It is always cool to meet fellow members of the Rhizo community. Unfortunately, we didn’t get a chance to talk further, as I was presenting and others wanted to hear about my poster.

After the session, I hopped in the car and drove home before the traffic got bad. I realized that I can get to the Berkeley conference center is just over an hour, and the drive was not nearly as bad as I feared. I had originally planned on taking transit, but the conference center isn’t that close to the subway stop, and the added walking would mean I wouldn’t be able to stand to do my presentation. Again, another way my current disability affects my decisions.

So, why do I say this was a day of transition? Because I officially re-claimed my identity as a scholar. Nothing about what I presented was about cancer. I realized that I needed to be my ed tech self, and not my cancer self. Reclaiming my dissertation and pushing to finish it might be exactly the therapy I need to recover from this journey. I do think I need to distance myself from it for a bit – that is, start focusing on non-cancer stuff for a bit – or at least looking at things through a non-cancer lens. If for no other reason, then because it reduces my anxiety and makes it easier for me to sleep at night. It gives me a way to see a future beyond the next month or two, and allows me to re-focus on my life again.

With this transition, you may see me blog less here, and more on my academic blog – http://rjh.goingeast.ca. You may not. I will still blog my cancer journey here, it is just that I wont be focusing as much here as I will be in other spaces on the web – and that is a good thing!

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!