Author Archives: Becky

Update on my foot and three years …

The good news is that my foot is healing well. The first few day was OK, the second and third days were quite painful. I didn’t have strong enough pain meds or a good enough strategy for dealing with the pain. Fortunately, I knew enough not to suffer too long, and called the weekend emergency number to talk to the on call doctor (who I woke up at 6:30 on Sunday morning) – which really helped. It meant that Sunday didn’t suck nearly as bad as Saturday evening did.

By Monday the pain reduced, and now I’m almost totally off of pain meds – I’m taking Tylenol about once a day. One of the challenges with less pain is the temptation to put weight on my foot. The doc wants me to not put any weight on for another week – so that the implant has a chance to set – in order to reduce the risk of the implant shifting. Makes sense, but it is a lot harder than I expected it to be.

One the challenges I’m having is the knee scooter is causing me to use my leg muscles differently. My muscles are cramping and sore, just from trying to do a few basic things like making myself lunch or dinner! It got to the point where I was feeling I needed strong pain meds for the scooter related muscle pains rather than the toe pain (ugg). So, I’ve had to rely on friends and hubby to ensure that I have food. I am glad for the visits from friends – it has kept me from feeling isolated while I’m housebound.

I’ve spent most of the last week on the couch. I hope to spend most of today either in front of my computer or on the couch – perhaps alternating between the two. Writing and reading – working on my dissertation. Since the sun is out today, I may try to spend a little time reading on the front porch – it isn’t really in the sun until late in the day, but just sitting outside and breathing in the fresh air will improve my mood.

It occurred to me that I also need to create a new category for my blog. This time last year I created a category “two years and counting” .. now I’m at “three years and counting” … I’m not sure when I’ll stop counting, but for now, I am recognizing that I’m three years without any known cancer. My outlook on life is slowly shifting. I’m looking at ways to reduce the number of doctors I have (although I’m not completely succeeding at it). I am still dealing with several issues with chronic illness / chronic side effects. But, as my toe surgery demonstrates, I’m moving onto non-cancer related health concerns. I’m hopeful that once I’m healed from this, I’ll be able to walk and hike with less pain. I’m so looking forward to getting back onto the trail.

Figured I’d end this post with some coastal pictures – taken up at Point Bonita the weekend before surgery.

Normalcy of Surgery – and my big toe

I am surprised at how I don’t think much of surgery – and yet I’m thinking about it. I’m preparing for it. I’m hoping it is as minor as the last time (Oct 2016). It will be slightly more invasive, as this time I have to be non-weight-bearing for 2 weeks – last time I could put weight on it the immediately.

Tomorrow, I’m have Cartiva artificial cartilage implanted in my big toe. I’m hoping that it will relieve some of the pain I’ve suffered through for years. It bothers me most when I walk – and I love to walk. When it acts up, it bothers me at night. I don’t need to be doing anything – and flexing my toes hurts.

And even with the ‘normalcy’ there is still a little bit of worry. Mostly worry in the logistics of it all. The inability to take an IV in either of my arms makes things likely more complicated. Since the surgery is in my foot, it mean that I only have one foot for a vein – otherwise they need to use a vein in my neck – something I am hoping to avoid.

One thing that I am happy about is that I have a bunch larger support network now. I have friends in the area that can help me out – take me to appointments when my hubby is out of town. It feels so much better going into this knowing that I have friends that I can call on for help, or just companionship when I’m hobbling about – friends that I will drop everything to help if they need me. For that I am thankful.

Celiac disease research update #celiac

If you have celiac disease in your family, I highly recommend a quick read of the University of Chicago Celiac Disease Center’s annual report – it is a short synopsis of relevant research (free – http://www.cureceliacdisease.org/wp-content/uploads/CdC_ResearchReport_17_WEBSITE.pdf).

What I find particularly interesting is the link between the gene and a virus. This is especially important for families with a history of the disease (it is genetic) with young children, as the research shows that a virus can turn on the disease when the young child is first introduced to gluten.

The second item – talking about the drug montelukast (also known as singular), might be why my diagnosis took so long. I had been taking montelukast for asthma and allergies for years. This likely disguised some of my symptoms.

I also find the last set of questions interesting – in part because I did not have child onset of celiac disease. I expressed my first known symptoms in my late 20s / early 30s. I can look back now and recognize the symptoms, but at the time I had no idea. I had just learned about celiac disease, as my father had just be re-diagnosed. At the time, we had no idea that it was a genetic disease.

I found out I had the celiac gene from 23andme – I had done the genetic test up in Canada, because at the time I did it, the US didn’t allow for the medical information. The test showed that I carry one of the celiac genes. At about the same time, I was diagnosed with Dermatitis herpetiformis (DH) – the skin variant of celiac disease.

There still does not seem to be much awareness for adult onset celiac disease. Much of what is written talks about onset in young children or adolescents (see https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220). This lack of adult onset knowledge reflects on healthcare for adults with celiac disease. My specialist doctors (gastroenterologist and dermatologist) each look at the symptoms of the disease and treating the symptoms – with a gluten-free diet and various creams. No one looks at it holistically. I also do an annual blood test to ensure that the antibodies that attack my system are within the range of what a person without celiac would have. It took more than 6-months on a strict gluten-free diet for my body to get to that ‘normal’ range.

In 2017, I had one or two mild reactions – but nothing severe. I don’t know if this is because I no longer react severely to mild traces of gluten, or if it is that I’ve been successful at avoiding exposure to even mild traces. I’m learning to be a bit more adventurous with my eating – especially when eating out – to the point where I have forgotten to explicitly tell the wait staff when ordering, and having to call them back to tell them. I still mostly pass on foods when I’m visiting with friends, focusing more on visiting than on eating. I have much less anxiety about exposure. I guess you could say that I have learned to live with it – I have adapted.

 

As Dec 17 approached, I’m trying to figure out Christmas

I bought my first ever real Christmas tree this year. It is a small tabletop tree – about all I could really handle. I’ve always had small trees – actually I had a Christmas pillar, and last year we decorated a Cactus out in the Arizona dessert. This year we are staying home so I figured we should have some kind of decoration. I also wanted to bring some plants into the house. I miss having inside plants.

I have been trying to do a few different things to help me get into the Christmas spirit. I bought a cookbook. This one is made by the same folks who make my favourite gluten free pizza – Against the Grain by Nancy Cain. I’ve had some success with the recipes so far, and I’m looking forward to trying some more. I may even manage to make some of my traditional Christmas favourites with a decent gluten-free adaptation. Crossing my fingers. Either way, I’m enjoying the experiments.

I also bought some fun emoji chocolate molds and made some emoji chocolate.

But I just don’t feel in the Christmas spirit. At least not yet. I wonder if it is the lack of snow? Or maybe how I feel will change after December 17. December 17 is the three year anniversary of my double-mastectomy with immediate DIEP flap reconstruction – a 10 hour surgery – a surgery that removed the last of the known cancer from my body. In the past I have felt different on that day. I thought I might want to celebrate, but then I didn’t. Year 1 it was a day of sadness. Last year it was just another day. This year – three years – feels significant.

Reflections on – When breath becomes air

I just finished reading When Breath Becomes Air by Paul Kalanithi. I’m glad that Lucy Kalanithi was speaking at an event with a friend of mine, Kelsey Crowe who wrote the book There is No Good Card For This (highly recommended), as I otherwise may not have added When Breath Becomes Air to my reading list. I’m glad that I did. There were some interesting observations and that I made whilst reading the book that I thought I’d share with you.

It occurred to me that my relationship with statistics changed as soon as I became one.

What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. (p.83-84)

I had said this myself early on – when I talk about the only statistic that mattered was one – the one that I was. I later came to learn that statistics were helpful in making treatment decisions (the unknown future), but there were not helpful after I had made a decision (the known past). Once the decision was made and the treatment was done, the statistic no longer had any value to me. It no longer mattered because I could not change the past – only the future. Although statistics look at past events, they are only useful when helping make decisions about future ones.

“Will having a newborn distract from the time we have together?” she asked.

“Don’t you think saying goodbye to your child will make your death more painful?”

“Wouldn’t it be great if it did?” I said.

Lucy and I both felt that life wasn’t about avoiding suffering. Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. (p.89)

In reading this I had a bit of an epiphany. I had never really understood the idea from Buddhism that life was about suffering, but I had taken suffering to be about agony, and not discomfort or pain. When I hike and I’m pushing up a hill, and I’m breathing hard, I’m not comfortable. I’m pushing through the discomfort because I know that when I get to the top I will feel a euphoria. There will be a reward. I will be happy for having put in the effort. It is that type of suffering that is good suffering. It is the type of suffering that leads to happiness. I do not think we need agony to appreciate happiness, but we need some suffering. That was my ah-ha moment.

In reading the book, I also found myself reflecting on the different lenses associated with decision making. More specifically the ways things change when dealing with critical illness.

“Okay. But there’s one thing.” She paused. “I’m totally happy for us to make your medical plan together; obviously, you’re a doctor, you know what you’re talking about, and it’s your life. But if you ever want me to just be the doctor, I’m happy to do that, too.”

I hadn’t ever considered that I could release myself from the responsibility of my own medical care. I’d just assumed all patients became experts at their own diseases. I remembered how, as a green medical student, knowing nothing, I would often end up asking patients to explain their diseases and treatments to me, their blue toes and pink pills. But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient. And I realized I was trying to do the same thing now, my doctor-self remaining responsible for my patient-self. Maybe I’d been cursed by a Greek god, but abdicating control seemed irresponsible, if not impossible. (p.112)

There is so much to unpack in this part of the story. Let’s start with the role of the oncologist. In this case, the doctor sounds absolutely amazing. She appreciates that at different times in treatment, the patient needs different things. With the “expert” patient early on, the doctor is a consultant – providing her expertise on the disease. The patient is the one making the decisions about which treatment path to take. The doctor steps back and has the conversation with the patient as partners in determining a care plan. However, the doctor is also aware that there will come a time when what the patient needs most is for someone else to take charge. She is letting the patient know that when he is ready to let go, she is there to take the reigns and make the decisions that need to be made.

Then there is the doctor-patient (the author) – that is, the patient who is also a doctor. He talks about his time as a junior doctor, willing to learn from the patient. I actually wrote about that from the patient perspective for In-Training magazine: Sometimes the patient is the teacher. The exception I take to his statement is that the author is assuming that all patients of critical or chronic illness are experts in their disease. Not all patients, even the educated ones, want to be experts in their diseases.

The idea that the author never considered the idea of releasing responsibility for his own care may speak to the culture of the US healthcare system – or maybe it is just a Stanford thing? In my experience at Stanford, I had to be the continuity of my care. I had to be the one that knew which doctors to see for which ailments, but also, I had to brief my doctors on what the other doctors where doing and saying. I am the one who knows the whole picture of my care. I do not have a single doctor that can do that for me.

This concept of patient being responsible for care is one that was foreign to me before I got here. I was taught that I brought concerns to my doctor, and my doctor (my primary care physician or family doctor), was the one who was responsible for my continuity of care. She was the doctor who had the ‘entire’ picture of my medical history (one huge paper file). I had no concept that I would be the one to maintain the file and that continuity of care until I moved to the US and had to take on that responsibility myself. I had to learn that through immersion into the system that was foreign to me.

Then there is the issue of responsibility “But as a doctor, I never expected patients to make decisions alone; I bore responsibility for the patient”. This statement bothered me, in part because as a doctor you may make certain decisions about my care, but I’m the one that has to live with those decisions. What you take as responsibility, I need to live with. The statement feels a little patronizing to me, and yet, as I read the book and got to know the author through his writing, I felt that he was anything but patronizing. He was all about helping patients come to understanding their values and how those values helped guide treatment.

One of the bits of advice that I received early on, and regularly talk about is ‘decide who you trust, and trust them’. This is the essence of being able to receive care. Part of that trust is partnership with physicians when it is appropriate to partner, but as a patient also letting go of the need to control things and trusting the physician to take care of you. We do this with surgeons when we go in for an operation. We cede our ability to care for ourselves while we are under anesthesia. We trust that the surgeon we chose will do what is best for us, based upon what they know of our values but also what we know about their skill.

There was also an incident in the emergency room with a resident, that also speaks to how he knew of the inter-workings of the hospital system, and yet was still challenged with getting the care he believed was necessary at the time. Through illness, he was required to cede control of his care to the resident who was on duty that evening.

Overall, I think this book would make for a great read and a great discussion on the role of the physician and the role of the patient. I think there are so many layers to the discussion.

Have you read the book? What did you think? Any insights?

 

 

 

 

Recurrence and hormone therapy

Even since Cancer Research UK posted an article reporting on a research report by Pan et al (2017), I have seen a lot of discussion on the topic of hormone positive breast cancer prognosis and hormone therapy.

The article itself caused a lot of concern surrounding two key things: (1) the continued risk of recurrence through 20 years, and (2) anti-hormone therapy treatments. I want to talk about the second issue first.

The inclusion criteria for the Pan et al (2017) research (that is, the women who were counted in the study) were those who were “scheduled to receive endocrine therapy for 5 years then stop, regardless of actual adherence” (p.1837). What this means is that the research study itself can in no way make any comment about the efficacy of endocrine therapy (also known as anti-hormone therapy such as tamoxifen or aromatase inhibitors).

Confusion around anti-hormone therapy stemmed from this quote in the Cancer Research UK article:

Gray said that the study shows it’s important for women with ER+ breast cancer to continue with their anti-oestrogen therapy for longer than the recommended five years. He hopes that these results will motivate women who are experiencing side-effects while on this treatment to persevere with it.

The problem is, that the research report by Pan et al (2017) does not speak to the efficacy of hormone therapies. In the discussion section (this is where the researchers look at the literature and their research and interpret what it might mean), it says:

Although reliable trials evidence is not yet available on the long-term effects of extending endocrine therapy for 5 additional years on mortality, an absolute reduction of a few percentage points in the risk of distant metastases over the next 15 years might well be possible even for such low-risk women, with correspondingly greater absolute benefits for women with larger tumors or node-positive diseases (p. 1844)

The area of specific interest to me in the above statement is that there is no evidence yet on the long-term effects of extending endocrine therapy. It does no good to cure cancer if the cure itself kills you from heart disease or makes your bones crumble from osteoporosis. Endocrine therapy is not without risks, and often involves horrible quality of life issues.

I want to talk more about what the Pan et al (2017) says. The research applies to easily stage survivors who were diagnosed under the age of 75 who has either stage 1 or stage 2 cancer with less then 10 lymph nodes involved. In addition, to be included in the study, patients had to be disease free after 5 years. The study looked at recurrence rates at the 5-20 year interval.

Note also that in order to get 20 year data, it means that some of those who were included in the study were treated 20 years ago. Chemotherapy regimes and practices have changed, as have surgery techniques, since the time of diagnosis. The study anticipates that those who are diagnosed today will have statistically better outcomes than those represented in the study.

In reading the article I was put at ease a little by seeing this image.

screen-shot-2017-11-13-at-2-59-01-pm

Although the risk of recurrence doesn’t stop over the 5-15 year period, it helped me to understand that my 20-year absolute risk isn’t my year-over-year risk. What I mean by that is, looking at the bottom yellow line, that if my 20-year risk is 15 percent, that doesn’t mean that each year my risk is 15 percent, rather at 5 years my risk is 3%, at 10 years it is 8%, etc. That actually made me feel better. For some reason, I had in my head that if I’m at a 30% risk, that I am always at a 30% risk – such that for any given day, I had a 30% chance of learning that my cancer had come back. That isn’t right thinking at all. The picture helped me realize how the statistics actually worked. It helped me feel less worried about where I am today. (note this is just one picture, there are a bunch of others in the report).

It is still a bit of a blow to think that regardless of how long I live, I will have a risk of recurrence. I knew it, but it didn’t really sink in until I saw the graphs. What this also made me think is that because of my young age at diagnosis, the longer I live, the more likely the cancer will come back (assuming the slope of the graph follows as it has the first 20 years).

There were some specific predictors mentioned in the report that I thought were of interest:

Although all the women had been clinically disease-free for many years, the original tumor diameter and especially the original nodal status remained powerful determinants of late distant recurrence, even during the second decade after diagnosis. Within each TN-status category, distant recurrences continued to occur steadily throughout the person from 5 to 20 years. (p.1840)

This is encouraging for me because my nodes where negative.

Tumor grade and the presences of Ki-67 antibody…were important independent factors of prognostic value during the first 5 years but were of only moderate relevance thereafter. (p.1841)

This is also interesting, as it says that the grade of the tumor (how fast it was growing) is a predictor for the first 5 years but less important after 5 years (still relevant, but only moderately so).

And finally:

The prognosis for women in particular TN categories has somewhat improved owning to earlier diagnosis, more accurate tumor staging, and better surgical, radiation, and systemic therapies.

In conclusion, even after 5 years of adjuvant endocrine therapy, women with ER-positive , early stage breast cancer still had a persistent risk of recurrence and death from breast cancer for at least 20 years aft er the original diagnosis. (p.1845)

Reference

Pan, H., Gray, R., Braybrooke, J., Davies, C., Taylor, C., McGale, P., . . . EBCTCG. (2017). 20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years. N Engl J Med, 377(19), 1836-1846. doi:10.1056/NEJMoa1701830

If you want to read the full article and are unable to access it, leave me a message and I’ll email it to you.

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.