Author Archives: Becky

Mindfulness and CBT – A #yogamooc reflection

YogaMOOC has caused me to reflect on the relationship between mindfulness and cognitive behavioral therapy (CBT). In the past I have been challenged with mindfulness instruction. In part, this has been because the instructors taught what worked for them, or what they had been told to teach, but what works for one person may be very different than what works for another. For example, I find that the exercise to focus on my breath really helps me, but I got nothing out of compassion meditation or body scans. For me, mindfulness is about the singular focus and the ability to see my thoughts and let go of them without judgement. I can do this when focusing on my breath – it doesn’t work nearly as well when I’m distracted by other meditations. But that is me. It will be different for everyone.

In this sense, I see mindfulness as a way to practice seeing my thoughts, and separating me from my thoughts. When I practice mindfulness meditation, I see my thoughts as thought-bubbles, and I watch them come and go, trying to ensure that I don’t attach onto any of them. My therapist described it as “thought” as sense, like smell or touch. We recognized our senses, and mindfulness is a way to learn to recognize our thoughts as a sense.

Cognitive behavioral therapy (CBT) on the other hand is about changing thoughts. The premise behind it is that you can change the way you feel by changing the way you think. The first step to any cognitive behavioral therapy is to recognize what you are thinking. Once you recognize it, you can categorize it or label it, then you can apply a technique to allow you to change it. Since I learned about CBT, much of the time I’m able to recognize my thoughts and fix them when they are broken. For example, I found myself procrastinating in writing my dissertation. I am normally very self-motivated, so when I saw that procrastination I knew there was something wrong. Further, I had told myself that I would ignore any symptoms that might indicate that my cancer has spread until after I finished the first draft of my dissertation. Somehow, my mind had translated that into ‘when you finish your dissertation, your cancer will spread’. It is completely illogical, but it was how my mind had warped one coping mechanism into another – which in turn lead to me procrastinating. Once I recognized what was going on (it is called ‘magical thinking’ in CBT language), I was able to burst that bubble. I know that my cancer will either spread or it wont and that has nothing to do with when I finish my dissertation. Those two things are not logically linked. By recognizing the thought patterns – stepping back and seeing them – I am now able to debunk the thought patterns and change them.

In some ways, mindfulness then is the first step in CBT. First you need to recognize the thoughts you are having. One challenge I have is learning not to judge the thoughts. If I judge them as right or wrong, good or bad, then I cannot get to the root of what is causing the thought, nor can I figure out what technique to use to change the thought. I just need to recognize that the thought is happening and that it is a thought that I wan to change.

Now to get back to working on my dissertation!

Happiness and hiking, it’s about the journey not the destination #yogamooc

I watched the #YogaMOOC video on A river of wellbeing and struggled with what she was trying to say. I had my husband listen to the video as well and he agreed. But then I tried to summarize the idea – and it was simple. Happiness is not a destination, it is a journey.

I reflected on this while hiking yesterday. I love it when I see things differently while hiking. The hike itself isn’t about the destination – it is all about the journey. It is about spending 2 hours in nature and just experiencing what is around me. I looked up to the hills and thought – wow, fall colours. In Ottawa, the fall colours are bright red, orange, and yellow – as the leaves on the trees turn before falling for the winter. In the hills to the east of me, the fall colours are the greens of vegetation coming back to life after a dry summer, but contrasted with the almost white grasses that have dried up over the summer – it make the contrast so much more vibrant.

Or maybe it is just that I was seeing nature in a more vibrant way – experiencing the journey and not the destination.

Then I turned a corner and saw movement. At first I thought it might be a mountain lion – it certainly was not a deer – but then it turned and it was clearly a wild boar. I didn’t want to get too close so I started talking loudly to myself. It ran.

I continued walking and then noticed some more movement. Another adult boar and three little ones. I really didn’t want to get too close to them. Fortunately, once they notice me they ran away – right towards some deer in the distance – who also scattered when the boar came towards them.

When I finished the hike, made it to my destination, I reflected on the journey. I felt a sense of peacefulness.

This week we are talking about our attachment to mobile devices and specifically Smartphones. Most of the areas where I hike there is no connectivity. I am disconnected from the world while I hike – however, I’m not really disconnected. My smartphone and my watch track my path. My watch vibrates to signal that I’ve walked a mile. My phone maps out the entire journey.

My phone is also my camera. It allows me to take pictures of the moments I want to share, and the moments I want to remember.

I am both connected and disconnected. Connected to the GPS, but also connected to my body, and more importantly connected to nature. Connected to the world around me. Disconnected from the internet, temporarily, but connected to the natural world. That is the journey. That is happiness.

 

Authentic smiling as a coping mechanism

In doing my PhD research, one of the things I noticed is that I took many pictures of myself smiling. This was done in part because I wanted to make sure my family and friends had lots of pictures of me smile (in the event that I didn’t make it). It was also done as a way to show my family and friends that I was doing OK.

The thing about smiling is that when it comes from the inside, it does help you feel better. However, it isn’t something that should be ever forced on a cancer patient. Being asked / forced to smile doesn’t work. The positive effects of a smile work when it is something that comes from inside the person, not when it is a facade put on to benefit others.

This week, I’ve seen many reports on this smile mirror – a mirror that forces cancer patients to smile. It is an example of a technology gone wrong. The forcing of a smile won’t help. Doing something that helps the person smile does help. Like how humor can help you feel better – nothing better than a good laugh – but forcing someone to smile just makes them feel worse. It makes them feel like their real feelings aren’t valid – that they need to put on a show for the benefit of everyone else – it just isn’t authentic.

The creator missed the point – authentic smiles make people feel better – forced smiles make them feel worse.

For me, smiling worked as a coping mechanism because it was me choosing to smile. Even when it was me putting on a smile for a photograph, it was still me making that choice. It wasn’t some stupidly expensive mirror app thing trying to force the smile on me – it was something that came from inside of me. That is why it worked.

Goals for YogaMOOC – and breathing after breast cancer surgery

This week we were challenged with setting our goals for Yoga MOOC – truth be told, I didn’t watch the entire goal video. I’m good at setting small manageable goals as well as longer term stretch goals.

My goal for YogaMOOC is to try everything at least once. I’m working my way through the videos, 5 minutes at a time. You see, my computer is setup to kick me off every 30 minutes – enforcing a minimum 5 minute break. That lets me do yoga MOOC in those breaks (as well as other chores like going the dishes and making coffee). When I find something that works, I keep it. When I don’t, I move on to the next thing.

One of the surprising things that is working for me is the short mindfulness meditation exercise (this video – https://youtu.be/Ui5RA6AYZVQ). I find myself more focused and more at peace after doing it. So, I’ve added that in as a regular break. The first time I did it, I was challenged because I did not anticipate the pause in the audio. I was laying down with my eyes closed focusing on the tip of my nose and all of a sudden the sound went off – no more background noise – I thought the video had stopped playing, so I opened my eyes to take a look. I’d recommend that whatever the background noise is, that it be kept, so that it is an obvious intentional break in the speaking, and not a failure of the video to load (the joys of tech).

The breathing video was particularly challenging (add to the didn’t work for me pile), because it had people laying on their stomach. Fortunately, I discovered this at a yoga retreat that I attended that I need to address breathing differently. My previous yoga training (prior to cancer surgery) had already taught me to stomach breathing (diaphragmatic breath). My chest surgery caused me to use diaphragmatic breathing as a default, but also caused me to not to fill the top of my lungs when I breath – so instead of feeling my stomach when doing breathing exercises, I actually need to practice feeling my chest expand. I also have a lack of feeling in both my chest and stomach, so laying on the mat on my stomach doesn’t help me. I need to use my hands to help determine where my breathing is happening. When I lay on my back with my hands on my stomach, I can feel where the breath is coming from.

I’ve taken a photo of my step (sorry cannot get a selfie of me in it, I’ll try get remember to get my hubby to take a photo).

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I put my legs up no the shower stool (it makes a great leg rest for yoga – which I only discovered yesterday!). I have a small pillow for my head as my yoga mat isn’t overly thick/soft. Also notice that I have my iPad with a chef stand to the side. Here I can play the videos while in position. I find this works really well for the meditation. I’m not yet sold on the body scan – but I’ll try that again tomorrow and see if is something that I’ll keep. I’ll definitely keep the mindfulness meditation practice.

Now for the off the mat mini-checkin (https://youtu.be/t_n3n9UrQM8), I’ve decided to reenable the breath notifications on my Apple Watch. I’ve set it to ask me every 3 hours to breath. It is a one minute break where it walks you through taking deep breaths. I can use that time to step back and reflect on how I’m feeling at the moment. Asking myself how my back is doing (I have lower back pain issues)? How much energy do I have? Am I hungry? Am I being productive at my computer or is my mind just wondering? Is it time to get out and do some exercise?

So far, I’m enjoying Yoga MOOC – http://yogamooc.com/ – and I’m hoping it will translate to me being more productive with my dissertation work!

YogaMOOC – Yoga and body awareness after breast cancer surgery

Yesterday I tried to do the full yoga class that launched week 1 of yoga MOOC. I wish that the video began with a statement about being kind to your body while you attempt this practice, but also not feeling like you need to do it all. Fortunately, I have some experience with yoga, so I knew not to push myself too much. I managed 20 minutes, but then had to stop. My upper body (shoulders) could not handle that much strain.

One area that I am highly aware of is what my body feels like when I am laying on my stomach on the mat. After my breast cancer surgery (double mastectomy with flap reconstruction), I do not have any sensation in my stomach or my chest. I become especially aware of this when I do yoga postures that involve laying on my stomach on the mat.

It has been almost 3 years since my surgery – and yet that part of my body is still foreign. In my everyday movements, I’m mostly unaware of the numbness. It has become ‘normal’ for me. I am comfortable with my body and I don’t think about it as much anymore – but yoga brings that back. I cannot do those postures without the reminder that I cannot feel. Afterwards, I find myself rubbing my belly – proprioception – I use my hands as a way to remind my mind of those parts of my body that I do not feel. Since my hands do have sensation, they help with that awareness.

Although I only managed 20 minutes, I did find that afterwards my mind was much more settled. There was a calm that came with it. My body ached, but my mind felt a sense of calm and relaxation. I think that may have been because I followed the breathing – there was an awareness and focus on the practice that I was able to sustain for 20 minutes.

I also doubted myself. I felt like this type of yoga was too advanced for what my body could do. Post surgery I took some restorative yoga classes – these classes were focused on slow movements, stretching, and meditation. We spent a good 10-15 minutes in a position of relaxation and meditation at the end of the class. It felt good.

Although I feel challenged, I’m also rather proud of how much I can physically do. I remember the first time I tried post surgery and I couldn’t get myself up off the floor without the help of a chair. And then I couldn’t do most of a sun salutation because my stomach muscles were so weak – holding the plank/push-up position was impossible. Now I can do most of the positions, but I don’t necessarily have the strength to hold them that long.

I would have loved to seen in the video of the class, some students struggling – some students doing modified poses – some sign that what I should do when I couldn’t do the pose – when I found myself skipping segments, I didn’t know if I should be standing, sitting, or doing child’s pose. That caused my mind to lose focus on the practice because I was worried about not knowing what to do – and then spending the energy trying to figure out what I should do. I stopped because I felt like I had enough – it was time for me to move on. But I was also left with that sense of peace and calm, and that is what I want to reclaim – not just the physical parts but the mindfulness parts.

That’s where I got to after day 1 – today I’m watching more of the videos that talk about the theory of yoga, and I might attempt a mat practice or two — or I might go to the gym and sweat a little – cause that too helps my body and mind.

Are you your disease?

My research looks at the first 35 weeks of my personal experience with breast cancer as I’ve documented it on this blog. A couple of the themes associated with my dissertation data analysis relate to learning about the disease and negotiating identity.

I think that this graph is particularly interesting:

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When I look at this, I see that I did most of my identity negotiating in the early weeks – shortly after being told I had cancer. I’m pretty sure that I’d see a peak again later – but my analysis ends shortly after my major surgery, so I’m not dealing with all the post-treatment identity negotiation stuff.

What struck me as interesting here is that in the first few weeks after being told you have cancer you are also learning a lot about the disease. Your healthcare team spends a lot of time educating you about the medical aspects of the disease and the treatment options. You spend a lot of cognitive energy dealing with learning the medical stuff.

The only really emotional aspect that I remember my healthcare team talking about is that I’d need to learn to find a ‘new normal’. As a result, I’ve learned to hate the term ‘new normal’. I rebel against it every time I hear it.

But what about all the identity negotiation that comes along with identity. If your healthcare team is spending so much time talking about the disease, does this not give you the impression that your healthcare team think of you as the disease. Is that impression something that happens because at the time in which you are struggling with identity negotiation, your healthcare team are focusing almost entirely on teaching you about the disease itself?

In a post a I wrote on a couple of days after being told I had cancer I wrote:

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.

I’m struck the strong influence my doctors had over who I was, and how at the time when I was seeing a lot of doctors, that I was also questioning who I was, and what this diagnosis meant to me.

Am I my disease? No. But the disease did shape who I am today – there is no avoiding that.

It has me wondering though, what can we do in those early days to better support patients who are dealing with cognitive overload around learning all the medical stuff about the disease while they are also having to deal with all the emotional and mental work that goes into negotiating identity and how that identity is fundamentally impacted by the diagnosis? Is there an ideal time, when there is a pause in learning about the disease, where the identity would could be done – as a way to help smooth some of the waves and chaos at that time? What support do you wish you had at that time? What else could you have handled?

Yoga MOOC

With a little help from my friends, I’ve decided to jump in and try out the Yoga MOOC – which starts next week (this week is week 0).

A MOOC is a free open online course (MOOC stands for Massive Open Online Course). You can pay money and get a certificate of completion, but really, I don’t care about certificates. I’m  most interested in the science behind wellness and how that might help me.

And so, I’ve signed up. I cannot say much else about it right now – but you’ll likely see a weekly blog post here.

I debated where to put the post. I usually blog about MOOCs over on my academic blog, but this MOOC is different. I’m not doing it to support professional development. I’m doing it for myself. I’m doing it for my friends. I’m hoping that it will help me find ways to get more joy out of life.

If you are interested, I encourage you to come join me in exploring wellbeing in the digital age – http://yogamooc.com/ … feel free to leave a comment if you are going to join in …

Don’t quantify suffering

One of the things I learned in support group was to not quantify suffering. It is all too easy to find someone who has it worse off than you – but that does not make your suffering any less valid or real. And when we do this quantification, we are dismissing our own suffering and not acknowledging it – or we are dismissing the suffering of others, and not helping or supporting them.

In the cancer world, it is all too easy to find someone who had it easier and someone who had it more difficult, but the experiences of others does not invalidate your experience. It doesn’t make your experience any less sucky. And those who have it easier than you still suffer. Their suffering is just as valid as yours.

I remember when a friend passed and I was feeling sad, but I also didn’t feel like I had the right to be sad. I had empathy for her family who where going through so much more grief than me. A good friend told me not to quantify my grief. It is a message that has stuck with me. I see the same with suffering. Trying to compare suffering doesn’t make it any better.

patient generated 5-minute medical history

While I was out hiking today, I got to thinking – thinking about one of the challenges I face with complex medical conditions. One of the problems I run into is that I get so used to things as being ‘normal’ that I forget to include them in my medical history. For example, I have celiac disease. I’ve been gluten free for over a year (yay). I’ve gotten used to the idea of being gluten free. It has become normal for me. So when I’m at a specialist, I don’t necessarily mention it. When I was at the ophthalmologist, I didn’t think to mention it. I have sleep apnea (well really hypopnea – a side effect of my cancer surgery), and I forget to mention it. I forget to mention that I’ve had lymph nodes out on both arms such that I cannot get IVs in both arms. I forget until it becomes very relevant (like when an anesthesiologist is wants to put an IV in my arm).

Throughout my cancer experience, I have learned that I need to be my own advocate. One thing I like to say is that I’m my continuity of care. I am the one variable that does not change regardless of which doctor I’m seeing. Doctors are busy. They see a lot of patients, with a lot of different issues, and yet we expect them to both be experts in the disease they are treating, but also understand our full and complete medical histories. And yet, there isn’t time for that in a typical interaction. Specialists in particular have tunnel vision. That is what makes them specialists – they get one thing very well, but they do not necessarily get complexity. I actually talk a little bit about this in an article I wrote for In-Training – where the resident wasn’t willing to admit she didn’t know about breast cancer – I was at a sleep clinic, I didn’t expect her to know, but I did expect her to admit she didn’t know, so that I could give her details that might actually be relevant to why I was at the sleep clinic.

Medical students and residents learn to take patient histories. They learn to go through a script asking all the questions they believe are relevant. As I patient with complex medical issues, I often find that is exactly the situation where I forget something – which might not matter, but might also be rather significant. It is with that, that it occurred to me that as a patient I should spend some time creating a patient generated 5-minute medical history – maybe a two page written document that summarizes my issues. That isn’t a lot of space – but it doesn’t need to be. It needs to say the most important parts about diseases, current medications, and any major past medical treatments.

This could go a long way to ensure that I don’t forget something important. It doesn’t replace the patient history / interview that the doctor does – it just provides a more wholistic view of my health – something that a specialist may not see. My pediatrist may not see or care that I have sleep apnea, but it becomes relevant when we start planning a procedure that involves twilight sedation (for any sedation, because of sleep apnea an anesthesiologist is required to be present). My sleep issue is not necessarily relevant to my toe pain, nor something that the pediatrist would think to ask about, but it becomes relevant when the doctor is recommending a treatment plan.

And with that, I now have a task on my to do list to create a 5-minute medical history for myself. What type of information do you think it is important, as a patient, to include in a patient generated 5-minute medical history?

Doctors think patients … and don’t talk down to me…

I wasn’t sure right away what didn’t feel right, but upon reflection I realize that part of my viscerally negative reaction at the Health 2.0 expo today was the number of vendors that talked down to me the minute they realized I was a patient advocate rather than a doctor or tech representative. I guess the good thing that can be said is that they didn’t assume they didn’t talk down to me as a women, rather they waited until they found out I was a patient advocate.

Then there were other vendors that were developing applications that doctors would “prescribe” to patients in order to increase “compliance”. My challenge, when I question them, they were developing their solutions based upon what doctors thought patients needed to know. They were addressing the reasons doctors think patients aren’t complying with directions. They never thought to get together a focus group of patients and ask them. Maybe, the are afraid that they will find out that they are solving the wrong problem. That the hospitals and insurers won’t pay for a tool that patients actually need, rather they will pay for tools that doctors think patients need (that is the pessimists in me speaking).

For one demo, to be fair the folks at the booth (CEO and CTO I think) were quite receptive to my questions and suggestions. Now in writing this post I think I might be conjoining or convoluting more than one booth – regardless my point holds.

The tool allowed doctors to prescribe the avatar for certain chronic medical conditions, like diabetes or heart disease  (they didn’t have cancer yet). The patient then could interact with the avatar, asking medical questions and getting medical answers. Further, the doctor is informed of the questions the patient has. It could also be used to allow the doctor to get information from the patient such as blood pressure (assuming home monitoring via bluetooth device).  My first reaction to this was that doctors already get more information than they can deal with – adding a way to give them more doesn’t sound like it is solving a problem. But I did realize a problem that I think their avatar could help with.

I think the chemo situation is an interesting one. We are told right away to “tell our care team” and “don’t needlessly suffer”, but then when we do tell our care team they appear to completely ignore what we are telling them. At first you report everything. Then after a while you stop. You learn that your doctor isn’t going to do anything about it, or there is nothing they can do about it, so you stop telling them. In psychology terms this is called “learned helplessness”. It can be really dangerous, especially for chemo patients, because some of the side effects are life threatening. I saw their tool and thought, if it had a way to tell the patient “I hear you” in a believable way, it might be a way to help with the learned helplessness. Sometimes all the patient needs is validation. Personally, I think this learned helplessness problem is a big problem that often gets confused with a lack of compliance.

The conversations highlighted to me that in some cases the tech companies are trying to solve what they perceive to be a patient problem by asking what doctors think patients need, rather than asking patients what they need. They seem to miss that if the end user of their tool is a patient community, that perhaps the patient community should be consulted as the tool is being designed. I don’t mean after the fact usability testing. I mean asking patients during the early design / concept phases whether they would actually use a tool, whether the tool would help solve the problem, and what the patients see as the problem rather than what the medical team sees as the problem.

Tech can solve many real problems, but too often tech is thrown at a problem as if it is the solution without really analyzing what the problem actually is.

Ya, that and don’t talk down to me.