Author Archives: Becky

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.

Friends

I have not written in a while. I’m finding myself struggling to write, in part because my struggle isn’t really my struggle, so much as it is the struggle of a good friend.

I know few people here. I got diagnosed just after arriving, so social circle revolves around the amazing people I met at cancer support groups. But, unlike a lot of those friends, they have other friends. They have lived here their whole lives, and as a result have so many other friends, that I know are closer than I will ever be. I am a cancer friend.

Recently my hiking buddy, Lori, is dealing with the next progression in her disease. She has metastatic breast cancer. Metastatic breast cancer is the type of breast cancer that kills. It is terminal. Her life revolves around what the next treatment might be.

We started hiking together when she was on horrible chemo #1. This was a clinical trial chemo. It did a good job of stopping her cancer from growing, but it also meant that one in every three weeks she was chemo sick. The rhythm was chemo, sucky week, two good weeks, repeat. We hiked during the two good weeks.

Then that chemo stopped working. She then jumped onto another trial, of a PARP inhibitor. This one didn’t work, so she didn’t last long on that one. Then came xeloda. This one worked for a while, but caused a side effect known as “hand-and-foot syndrome” where her hands and feet went red and felt like they were burning. Her skin changed and she had no fingerprints. Her heals would crack and bleed. She described her skin as being smooth like plastic wrap. This was a pill-based chemo that she took for two weeks then had a week off. During her off week and the first week she could still hike.

While hubby and I were off on vacation, the xeloda stopped working. She had a really bad progression. It was not just tumors growing, but new tumors showing up on scans in different organs. Not good. She is now hoping to be on an immunotherapy trial starting next week. Hoping. She has not been on any chemo for more than 20 days (required for the wash-out period before joining a clinical trial). I am crossing my fingers and praying that she gets into this trial and that the immunotherapy works for her. If it does (or her next chemo does), then I’ll get my hiking buddy back – but regardless of hiking she has become a close friend and it breaks my heart when I think about losing her, but I know that is inevitable – her disease is terminal.

That is Lori’s story. My challenge has been that I have few other friends. She has a 40+ years of friends and family that want to spend time with her. I know that I am a good friend, just that she has so many people wanting to see her and very little energy to do it. I’m staying in the background, but offering up my support in any way I can. But, it is already leaving a hole in my world.

I realize that too much of my social world is either in the cancer sphere or virtual. I love my cancer friends and I love my virtual friends, but I am feeling the emptiness in the non-cancer, non-virtual sphere. It leads to loneliness, which in turn leads to depression. I know this is happening. When you add this to the weight of knowing your closest local friend is going to die, and it might be soon.

I’m struggling. I’m working on my dissertation. I’m teaching. When hubby first moved here (he moved a year before me), I started reaching out to others. I started to make friends. I was doing the emotional labor that is required to help make new friends. But then a cancer diagnosis changed that. I couldn’t go out and make new friends outside of the cancer sphere when I was in active treatment.

I’m two years out of active treatment now, and I am realizing that I need to start putting in the emotional labor of making new friends. I need to figure out what I’m doing professionally, and connecting to others that do what I do. I will try to get involved in meet-ups, so that I meet new people. Working from home makes this an extra challenge. Working on my dissertation also means that I don’t have a lot of extra time. I’m pushing to get it done, but the cost is that is that I don’t have the time or energy to seek out new connections which might lead to new friendships. But if I want to fight off depression, I know that I need to do this. Depression also slows down the dissertation process, so it does not serve me well. And so, as a first step, we are going back to church. My only non-cancer friends down here are Unitarian friends, who have started to engage with the Palo Alto Unitarian church. I’ve not been there. We will give it a try and hopefully find a new spiritual home. I think that is what I need right now more than anything, and that will help me when I have to deal with the intense grief that I know one day I will need to deal with.

If you’ve moved to a new place, what have you done to make new local friends? 

Normalization of surgery and toes

It struck me the other day that the whole concept of surgery has been normalized for me. I knew this about breast cancer surgeries – where the talk of lumpectomies, mastectomies, and reconstruction are just normal part of my vocabulary, but I didn’t realize how that also influenced other areas of my health.

When my big toe pain came back (I have osteoarthritis in my big toe – I had a surgery about two years ago to clean out the joint which did relieve some of the pain), I went back to see the pediatrist. He recommended a synthetic cartilage implant (www.cartiva.net) that has recently been approved. What is interesting to me is that the studies were done in Canada and the UK.

What struck me was that the idea of the surgery didn’t bother me in any way. The whole idea of getting a cartilage implant seemed cool more than anything else.

I’m finding myself wonder, if my willingness to do this is in part because the whole idea of surgery has been normalized for me? I’m not worried about it. It doesn’t feel odd in any way.

It is also interesting that I didn’t want implanted breasts, but I’m OK with implanted cartilage in my toe. I think part because the alternatives aren’t any better. My toe pain is back. It can be problematic at times. The surgery I had two years ago relieved some of the pain, but not all of it – and my range of motion isn’t great. The x-ray showed that the arthritis grew back. The pediatrist doesn’t think doing the same surgery again makes any sense, because it will just grow back. We knew when we did it, that is was just a stop gap. The idea was that it would give me 5-7 years before needing to fuse the joint. I didn’t get that long, but this option is much better than fusing. It it doesn’t work, then fusing is still an option, so it doesn’t take that off the table. So, logistical me says this is the right choice.

Do you find that breast cancer surgeries have made it easier for you to approach other health issues?