Tag: Coping Mechanisms

Persistence, Tenacity, and New Blood

This cancer journey reminds me of some aspects of our Going East bike trip – particularly during those times when persistence and tenacity are what you need to make it over that one last hill. I always thought this picture from our trip made a great motivational photo (Scott pushes the loaded recumbent bike up the mountain – you can see the sweat on his back – unfortunately the picture does not do the steepness of the hill justice). The locals thought we were crazy trying to bike over this mountain pass – but we were both persistent and tenacious and we made it!

Perhaps this is a better persistence picture (also in northern Thailand):

My point here, is this is how I feel when I’m feeling fatigued. I feel like the entire road is uphill. And although these pictures show a struggle, they also bring a smile to my face. They remind me of challenges that I have overcome. They provide me with that little extra reminder, that yes, I can do this.

Yesterday, I had my first transfusion. The AC chemo was knocking out my red blood cells (RBC), and they were not being given enough of a chance to bounce back between rounds. Folks have asked about drugs to help with RBC. Apparently the drugs take a long time (6-8 weeks) to boost production, and the side effects can be worse than the side effects of a transfusion. Given the more immediate need for a boost now, it made sense. And so, I had my AC chemo on Monday and a transfusion of two units of RBC on Tuesday. I cannot say I immediately feel better – but then the AC chemo knocks me down for a few days, so it is hard to say. What I can say is that I have more colour – my cheeks are pinker and my lips have natural colour again. I had not really realized how pale I was before the transfusion.

Unfortunately, my phone doesn’t take very good photos.

We were also serenaded by the harp during treatment, which was nice. Apparently, med students who are also musicians volunteer to play in the cancer center. This is the first time we’ve seen the harpist directly in the infusion treatment area.

The volunteers at the hospital make the nice head scarfs/hats. I discovered that it works well when the tie is on the side – kinda makes me think I should learn to read tarot cards.

So, now I have some new blood. I am still feeling some fatigue, but hopefully in the next day or two I’ll bounce back :-).

Wed August 20, 2014
The transformative power of a bike ride

One of the hardest things I’ve done lately, was to get out of bed after my afternoon nap, and get on my bike. It wasn’t that I didn’t have the energy for it – I did. I’m in a strong phase right now. It was that I was sad. And not the type of sad that happens when I have a needed breakdown, but the kind of sad that looks a lot like depression – and that scares me.

So, I dragged my ass out of bed and had a bowl of ice cream. I’m allowed comfort foods whenever I want them! And when you are sad, they help a little … plus I knew I would need the energy, cause if I was going to get off my ass and go for a bike ride I needed to ensure my body was fueled before I left.

So, I did it. I got changed and hopped on my road bike. For the first half hour of riding, I cried. My nose ran – most annoying side effect of chemo hair loss is that you lose the hair in your nose so your nose runs a lot sooner when you cry. I allowed myself to cry. I contemplated anti-depressant medication. I know that at some point I will probably need it, but I want to avoid it if I can. There are side effects to that as well.

About a half hour into my ride something changed – the endorphins kicked in – I suddenly started to see the beauty around me. I stopped to take this picture as the bird seem to be posing just for me.

The bike ride transformed me – from sad-Becky back into warrior-Becky. For the remainder of the ride I worked out the important arguments in a letter to the Editor for the New York Times relating to my recent blog post on bilateral mastectomies, that I plan to write (hopefully later this evening). Thank-you for those who have encouraged me to write something more formal.

I cannot say that I am no longer sad – I am just not dysfunctionally sad. I’ve moved past that part and can now start to pull my thoughts back together into actions. I hope to get out for another ride first thing tomorrow morning before it gets hot and sunny (since I cannot swim tomorrow due to low blood counts).

Thu July 31, 2014
Every day a new side effect

Chemo has many side effects, so many, that they don’t tell you about them. What happens is, when you have a symptom, you contact your oncologist (or the oncologist on call) to see whether or not it is something you should worry about. There are so many side effects, many of which are rare or not that common, that listing them all to every patient would be impossible. But, from the patient perspective, I find myself constantly running into these odd side effects. I’m happy to be part of several support networks (both face-to-face and virtual). The virtual networks in particular are useful for finding out whether something is “call the doctor immediately” or “pretty common, mention next time your are talking to your oncologist”. For the most part, my oncologist has not been concerned about the side effects I’ve experienced. It seems to be though, that ever day something new pops up.

Yesterday’s new side effect was loss of voice. Not a total loss, but I notice that suddenly my voice is horse and it is more difficult to speak. This of course posses and interesting challenge, as I also have blisters on my hands from toxic erythema of chemo, which I also experienced last cycle. When the blisters are at their worst, typing can be painful, so I use voice-to-text on my computer. The horse voice makes that a little more challenging. I actually don’t know for certain yet if this is a chemo side effect or if there is something else going on, but my social networks tell me it is not uncommon. I just haven’t yet had that confirmation from my oncologist.

I’m also loosing my hair. Now, this is something that was expected, and it was why I shaved my head in advance of cycle 2. However, when people say that hair loss usually occurs on days 3-4 of cycle 2, I expected it to be a single day event. That isn’t really what is happening. My hair is getting thinner on various parts of my body. From the front, you don’t really notice the hair loss on my head (which made me think it wasn’t happening), but from the back it is pretty clear. It is also interesting to compare mine to Scott’s, since we had them shaved at the same time. His is growing, mine clearly is not. It is actually the towels where I notice it most. I’ve taken to using two towels after a shower, one for my head and one for my body – otherwise, I end up with the little hairs from my head all over my body!

Once the hand sores finish up, I prepare myself for the mouth sores. I’m now at a stage where food is tasting funny and my mouth feels fuzzy, like a layer of skin is shedding in my mouth. Last cycle I had a sore on my tongue which was rather annoying and painful. Food was finally tasting good, but it hurt to eat (ugh). I’m hoping that by using the magic mouthwash in advance I manage to avoid the worse of the mouth sores this cycle.

Today was also my last swim until after my chemo nadir (blood count low). I have three days (8-10) where I cannot swim as my risk of infection is too high. I’ll miss swimming, especially if my hand sores aren’t healed as biking isn’t an option when I have blisters on my hands. This actually also coincides with fatigue, so last time on day 10 all I did was sleep all day.

All that being said, so far cycle two has not been as bad as cycle 1. I think because I have a better idea of what to expect, I can be more proactive about managing what is happening. I can also plan my weeks out better. I now know not to commit to things on specific days, but on other days I can be more flexible. That helps. The control freak in me is feeling more in control of what is happening.

Tue July 29, 2014
Who would have thought … I look sexy in a buzz cut!

Today was the trip to the really nice lady who volunteers to shave heads for those who are going through chemotherapy. We decided we needed a before picture – as Scott was also going to get his head shaved (in part in solidarity, but more because he needed a haircut).
As she shaved my head, I was pleasantly surprised by the result. I actually look pretty good with a buzz cut.

Afterwards, Mom and I went shopping. I started out wearing the head scarf but soon found myself feeling just fine without it. I was especially amused with the feel of the wind on my head with the windows open in the car (usually it drives me nuts to have the windows open as my hair flies everywhere). Then I discovered my shadow, which is very odd looking and still catches me by surprise.

There are so many new sensations – it is amazing. Even a task as simple at putting on a t-shirt feels completely different. I’m looking forward to tomorrow mornings swim and shower!

Now I just need to get a few nice pairs of dangly earrings (I welcome donations/gifts). I don’t normally wear earrings, but long dangly earrings suddenly help me dress up nice. I was never really big on fashion, and now I find myself buying a bunch of nice clothes so I have something fancy to wear to various appointments and meetings.

Definitely feeling good today 🙂

Fri July 18, 2014
Meltdown

Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part. I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

Mon July 14, 2014
Humour in the moment – which boobs should I wear?

In this moment, we (Scott and I) often find ourselves laughing at things that are rather absurd, but real none-the-less. I recognize it clearly as a coping mechanism, and something that is definitely needed. But I’m also aware of how easily something funny can turn into something not funny.

I recall back in my undergrad days, one of my friends had cancer. She had cancer before I knew her, and had a re-occurrence. I did not know her well, but well enough that I remember her clearly. Last I had heard she had two beautiful children and was doing well. I mention her because of a particular story. At her wedding shower (she had recently been diagnosed with the re-occurrence), we were laughing about this or that, and for some reason the jokes turned to wigs. There was laughing at first, but then a sudden transition to tears. This is what I’m aware of every time I laugh about something. I’m aware that at any moment that laugh will turn to a cry.

Today’s laugh was about prosthetic breasts. I never even occurred to me that one would make special prosthetic breasts for swimming. They even make aerodynamic (or I guess aquadynamic) prosthetic breasts. Who knew? I was reminded of Aimee Mullins TED talk about her 12 pairs of legs. She talks about how having various legs allows her to be different heights. She talks about legs as things that allow her to specialize her superpowers (when she wants to run fast, she has special legs for that). So that got me thinking about fake boobs. You see, if I don’t opt for reconstruction, and if I end up with cancer in both then I too could have multiple sets of prosthetics for multiple purposes. I could have bigger boobs to fill out my favourite shirt, or smaller ones when I want to appear more professional. Then of course, it occurs to me, that people who saw me regularly would find it rather odd that my chest size kept changing, and how would you go clothes shopping? Which boobs would you wear? And if I were to get into competitive swimming, would the boobs I choose to wear affect how fast I swim? Would that be considered cheating?

In all seriousness, I am thankful that the surgeon highlighted that a mastectomy is a real possibly. Not that I want one (the whole idea scares the crap out of me), but that I have a little more time to mentally prepare for it. When the diagnosis is in, and the treatment options are presented, I will be better prepared to make a decision. I at least will have had a chance to explore the options. It never would have occurred to me to search the Internet for breast prosthetics. My fear of being ‘lopsided’ does have some solutions – but frankly, given that I hate wearing bras, I’m still dealing with choosing between two bad options. Reconstruction means more surgery, more complicated surgery, and more healing time. No reconstruction means a life of prosthetics (at least for formal settings).

On a related note, Scott and I went for a walk around Sausalito on Saturday. I notice that I was looking at other women’s breasts. I had never really taken notice of other women’s breast before – but now, I find myself drawn to them. I am looking. I’m not even sure what I’m thinking when I’m looking, but I am certainly finding myself drawn to look. It is all very odd. Perhaps I’m admiring? Perhaps window shopping? Who knows.

Mon June 16, 2014
I am an academic

Last week, I was reflecting deeply on who I am and where I want to go. I did not get shortlisted for my dream job. Part of the reason for this is that they had an ample sufficiency of candidates. So many candidates, that they didn’t need to consider someone who had not yet completed their PhD. My concern was, if they had so many candidates, then it is a sign that the market is flooded. This was a position that I was qualified for and well suited for – so I found myself wondering, is academia for me? Do I want to fight for the limited number of faculty positions, especially when the faculty jobs themselves are eroding. They aren’t the same jobs they were 10 years ago. And frankly, this isn’t my first career. I don’t have the energy nor the desire to climb the ladder from the bottom rung.

So, I was also looking at consulting, and looking at careers at large high-tech companies. I’m in silicon valley after all – there are 10-20 new instructional design jobs posted every few days.

Then came breast cancer – and with it a chance to reset – but also a lot of deep reflection – with more deep reflection to come I’m sure. A bit of advice I was given from an academic friend (and please, if you are not a cancer survivor, hold back on the advice) was that one approach is to treat the disease with curiosity. Scott and I had already decided that we would treat is as a new adventure – the next chapter in our lives.

Curiosity is a trait of an academic. And I realized that I want to approach this problem as an academic. I want to read the literature to figure out what I’m dealing with. I want to write about my reflections throughout the process. I want to look at how I might use my reflections and this process as research – can I do an auto-ethnographic account of my experiences as a breast cancer patient? It was then that I realized, I am an academic. I want to approach my experiences in the world through the lens of a scholar – not through the lens of a practitioner.

I am now thinking, that once all the unimportant stuff in my life gets peeled away, the essence of who I am will rise to the surface. That has started now, and I expect that as the weeks progress I will find out more interesting things about who I am.

Sun June 15, 2014
It all started …

… with denial. I felt something. Could it be what I was feeling was just a muscle strain. Surely if I waited a couple of days it would go away.

Breast cancer was never something I thought that I would ever have to deal with. I know of no relatives with breast cancer – well, that is not completely true – my cousin was diagnosed with breast cancer at about my age, and she passed away about a year and a half later. But, she had breast cancer on the side of the family that I was not related to by blood, there were additional circumstances that led to her diagnosis – it did not apply to me – I was still safe.

One reality is that the major of women who get breast cancer do not have relatives with cancer. I am now part of that statistic – or at least, my part in that statistic will be positively confirmed by Wednesday. I wonder, how it possible that majority of women who get breast cancer do not have relatives with cancer? If one in eight women get breast cancer, then I cannot see how those numbers add up. I am definitely going to have to do some more research into this.

So, my approach to this new challenge in life is to look at it as an academic. Why not? It gives me a perspective and a way to focus. I shall look at this blog as a journal into lived experience. Combining the medical jargon with the lived-experience of someone with breast cancer. I shall be negotiating how this new identity of mine changes who I am as a open academic.

So, today my goal in life changes. Today, I can now say that I want to be identified as a breast cancer survivor, as the alternative doesn’t look so grand!

Sat June 14, 2014