Author Archives: Becky

Making valuable choices

“I often think I have not yet been ill enough to know how to live. I still evaluate choices in terms of what counts on my resume, instead of asking whether I am producing something I think is valuable and if I am meeting people’s needs rather than fulfilling the demands of some system” (Frank, 1991, p. 119)

I find the reflection of Arthur Frank to be rather interesting, as I find myself constantly asking the question “is this what I want to be doing with my time?” I do find that I think occasionally about my resume, but not as much as I used to. I’m less focused on collecting conference presentations or publications. I think more about whether or not fundamentally I’m doing what I want to be doing.

I recently cancelled a conference presentation and trip. I had originally thought I wanted to do it, but after my last trip I realized that it wasn’t how I wanted to be spending my time. I want to focus on doing things that make my body strong and feel well. I hate not feeling well – and spending too much time travelling to conferences isn’t making my body well.

Part of what helps ground me, and keeps me from falling into the traps of the resume building world is the time I spend with my friend Lori. She has metastatic breast cancer – that means her cancer will kill her. The only thing keeping her alive is chemotherapy. We spend time together hiking. We explore trails in the area, seeking out paths through trees and views of the valley. During out walks we talk about pretty much everything and anything. We reflect on life, often retelling the same stories over and over. In many ways, it doesn’t matter what the conversations are about, more that they are conversations that allow us to keep walking – and that walking helps keep our bodies strong. Walking with her reminds me to value my days and to keep living. Our time is precious.

In addition to hiking, I’m looking into some gentle yoga classes. About 20 years ago I did yoga fitness classes, and on our world tour bike trip, my hubby and I had a morning yoga routine. We did daily yoga at Commonweal, but that was much more about meditation and less about stretching and balance. What I need now are routines that help me stretch, balance, and strengthen.

I am finding myself back into the position of trying to do too many things, such that I cannot seem to get to any of them. I want to be biking more often, and swimming more often, and hiking more often, and then adding in yoga on top of all of that. Mostly, I could use a little encouragement to actually get there. To get too that yoga class … if I go to the one at my gym I can combine it with a swim. I’ve added it to my calendar, so we’ll see if that helps make it actually happen.

The other big goal I’ve set for myself is to get my dissertation done by the end of the calendar year. If I cannot finish by December, I’ll need to apply for another extension to my program. I do not expect any problems with getting an extension, but really, I don’t want to need to be doing it. I’d like to get it done so that I can move on to the next phase – whatever that may be. I’m enjoying my time doing my dissertation work, but I’m also feeling like I need to start seeing the light at the end of the tunnel.

And so, as I read, At the will of the body, I find myself reflecting on the choices I’m making about how I spend my time, and feeling like I am making choices that I feel are valuable to me.

 Reference:

Frank, A. (1991). At the will of the body: Reflections on illness. New York: Mariner Books.

Selfishness to reduce stress

I took advantage of some spare time between appointments today to go for a walking along a lovely creek trail. I was struck by the beauty but also the sense of peace associated with the tall trees and the green around me. I noticed pretty purple spring flowers that are now in bloom. With all the water this winter, the hills are alive with green foliage. It is beautiful.

I’ve been rather stressed lately with the worry of what is happening here in the US. I’ve been worried about what will happen to so many of my friends if the ACA is repealed without a plan to cover pre-existing conditions. I’m also worried about life-time maximums. I have too many friends who are undergoing really expensive life-sustaining cancer treatments. Lifetime maximums would be a death sentence for them. This has been weighing heavily on me.

I am someone who sees the big picture. I find it frustrating when I see people making decisions based upon themselves, without any consideration for the bigger picture.

But, what occurred to me while walking, is that I’m carrying a lot of stress that isn’t about me – and that isn’t good for me. I know it sounds selfish, and it is selfish, but I need to be selfish for the sake of my health. Not being selfish is causing me to carry a lot of stress that isn’t good.

I am aware of my privilege, but today I found myself taking stalk of it. I am a white well-educated Canadian. My husband has a good paying job, with good health insurance. He is not likely to lose his job, and if he did, we could pack up and move back to Canada. If I chose to cross the boarder today for any reason, the likelihood of me being subjected to an invasive search by US Border Patrol upon my return is minimal – because I am a white Canadian who was born in Canada.

The things that have been causing me a lot of stress lately don’t directly affect me. Now, I have some things that are causing me stress that do affect me (like my health, back pain, risk of recurrence), but I also have a lot of things that are causing me stress that don’t directly affect me (crossing borders, healthcare costs, insurance, …).

While walking today I realized that I need to let go of the stress associated with things that don’t affect me. I can be bothered by them, yes, but I should not hold onto that unhealthy stress. It is not something I can do anything about. I remind myself that we would not be living here if my husband’s employment did not include adequate healthcare. That was part of the deal when we moved here. If the situation were to change tomorrow, we have options.

It feels selfish to let go of the stress, but I also know that it is not serving me well. The world is gaining nothing by me taking on stress over things that I cannot control. And so, selfish as it might be, I’m going to try to let go of it. I will hold onto good stress – stress that helps me be a better person, but not futile stress – stress that I cannot do anything about. I will try to enjoy more the beauty around me. It is a beautiful spring day in California after all.

Letting go of at least some of the fear

It feels good when your oncologist acknowledges that what you are feeling is real. Today, I had a six month oncology follow up. This is the first time I’ve gone a full six months without seeing my oncologist. It was a bit of a break through. That being said, for the last two to three weeks, I’ve been having Lupron woes. I’ve found myself overly moody and especially cranky/angry at things that really shouldn’t bother me. It was becoming rather problematic. I’m really glad that when I mentioned it, my oncologist acknowledged that what I was feeling was real, and it was something that we could/should do something about. And so, we’ve moved my Lupron shots to every 2.5 months rather than 3 months. We’ll see if that helps to even out the mood swings/hot flashes at the end of each cycle. If not, there are other options.

We also chatted about Aromatase Inhibitors (AIs). There is a theory that I should also be taking one. I stopped taking them 6 months ago because I was feeling horrible and couldn’t figure out the cause. I had a weird ear popping sensation that now I know was related to blood pressure meds, but at the time I thought it was that AI. My oncologist suggested that it was my choice – that if the side effects where too problematic, that the added benefit (beyond the Lupron) might not be worth it. I don’t recall side effects being too bad, as the main issue I had was related to my blood pressure meds. So, I’ll try again when I don’t have too much happening. The big concern for me is the bone/joint pain. If the AI increases pain, then it becomes not worth it. I’m already struggling with back pain, so I don’t want to add anything that will increase it. What I find particularly interesting is that for the first time I’m making decisions not out of fear. In that, I am deciding about the AI without feeling like it is a “safety net” that I need. It might help, but I’m also open to the idea that if the side effects suck too much that I am OK with not taking it.

The not so great news was around likelihood of recurrence. Now truthfully, there is no real way to know. My cancer was pretty unique. That being said, my oncologist sees a lot of people, so I trust that he has a good sense. I finally got up the courage to ask – it wasn’t easy. I’ve wanted to know for a long time, but I just couldn’t ask. I had hoped that I would hear that I was in the group of women who have a greater than 95% survival rate. Unfortunately, that wasn’t the number that he through out. He commented that with ER/PR+ the recurrence rate doesn’t peak at any point, rather it is pretty steady for the first 11 years before it drops off. Then when I asked he through out the number 20-30%. That is actually the pretty standard number, but not the one I was hoping for. I was hoping that because there are others with much higher recurrence risk, that my number would be lower. It certainly causes a moment of pause. And so, with that, I will plod along reminding myself to take one day at a time and reminding myself to keep truly living rather then dwelling on what the future may hold.

Feelings of health

As my health improves, I am struck by feelings of fear that the cancer has returned. It is a total juxtaposition – the idea that feeling healthy is a sign of sickness.

I discussed this with my therapist the other day. She commented to me that breast cancer, unlike many other cancers, creates this juxtaposition, because early stage breast cancer only appears in the breasts. Those who have it often don’t feel sick in any way. This is in part of why the diagnosis is such a shock when it comes – because you are not feeling sick.

Before treatment started, I blogged about how I felt stronger than ever, and as a results was associating the sickness with the treatment not the disease. I remember being angry about it. At the time, I didn’t see the other side of that coin – the association of wellness with the disease.

So now I’m working on the other side. I’m trying to allow myself to both feel well and not have cancer. I find myself wondering if my body is making up aches and pains so that I don’t have that wellness feeling that I had when I was diagnosed. That or I’m just remembering wrong. Maybe I did have body pains before cancer, and I don’t remember it because in my mind I was doing really well before cancer.

I do hope that some day this fades away.

End of Life Options Act

The End of Life Options Act is the State of California’s death with dignity legislation. It allows mentally competent adults with a terminal illness, such as metastatic breast cancer, to gain access to medications that help them choose the time and situation of their deaths. The website I’ve linked to above includes all the forms provided by the government, to help both patients and physicians make informed decisions and navigate the new legislation.

Today was an emotionally difficult, but important, day. It wasn’t about me – I don’t have metastatic breast cancer. As far we know, my cancer was treated. My friend, however, a 45-year old mother of two (her youngest being 10 years old) isn’t so lucky. She was diagnosed with metastatic breast cancer about 3 years ago, after an initial diagnosis of early stage breast cancer followed by a couple of years being cancer free, before recurrence. She has undergone several different chemotherapy regimes. She isn’t ready to die yet – but she knows that although she may be doing well today, things can change very quickly with her disease. She has seen at least one progression, where her cancer went from “no evidence of disease” to significant tumor growth in the span of weeks. So, she knows her body, and she knows a heck of a lot about what it means to both live and die with metastatic breast cancer. She is in no way uninformed.

As part of the End of Life Options Act, there are many checks-and-balances. The first is that upon the patient’s request, their primary physician (in her case a pretty awesome primary care doctor) explains the laws, but also that there are options in death. That there are multiple routes to end-of-life, including with significant support from palliative care and hospice care. After leaving the first appointment, with lots of information and handouts and such, the patient then needs to wait a minimum 15-days before requesting a follow up appointment. The documentation is not signed until the follow up appointment. At the second appointment, a non-relative is required to come and witness the paperwork. Actually, there are two witnesses in the current iteration – one who cannot be a relative or in any way benefit from the patients death and who is not a member of the physicians medical team/staff, and the other who is there as a second witness. The second witness can be from the physicians office.

Today, I was my friend’s witness. I watched as the doctor spent an entire hour listening to my friend – deeply listening. Hearing her concerns / questions about the legislation, and speaking to them. I watched as she saw beyond the question and prompted to learn what the real cause of concern was. The doctor was one of the most empathetic but also most talented primary care physicians I’ve ever seen. I was truly amazed at their knowledge of the process, but also with their knowledge of the patient experience – and how to help reduce anxiety and answer questions.

The physician explained both the process of the legislation, but also the process of the health organization for whom they work. The doctor explained that a second consulting physician will be needed, and that the second physician (in this case someone from palliative care) will explain all the options for end of life care. Something that this doctor has also discussed – and can support.

The physician explained the requirement as a terminal illness with a prognosis of less than 6-months. The challenge with prognosis with cancer is that many people live much longer than 6-months. My friend is not planning to die anytime soon, but she also knows that her situation could change at any point in time. If the chemo she is currently on stops working, and the next option doesn’t work either, she may not have a lot of time – and certainly not the time to figure out all the new legislation and how to jump through the different hoops on how to get it enacted – especially at a time when she will be wanting to spend her last months on earth with her family and friends – not managing multiple additional medical appointments. My friend also knows that if she stopped treatment (chemo) today, that it is highly likely that her cancer would consume her well before six months has passed. She is in no way naive about her body, nor is she unfamiliar with metastatic breast cancer progression.

One of the areas of concern for my friend was the 48-hour rule. In California, the medication must be used within 48-hours of being dispensed. This caused my friend great concern – worry about needing more than 48-hours to plan (she, like me, is a planner). The doctor emphasized that they would be available to support my friend – whenever the time got close. Also, that my friend could change her mind at any time – even after the medications have been prescribed and picked up. That it is totally her call, and that filling the prescription is not a requirement to take the prescription. The physician also explained that when we are nearing end of life, time slows down a lot. So, what may seem like a really short time (48-hours) when you are “healthy” and active, feels like a lot longer when you are close to end-of-life. That in the doctor’s experience, it does not feel rushed – but also, that if at the time my friend is feeling rushed, that she need not to worry. There is no magic 48-hour do or not clock – the physician is there to support the patient, and if a few more hours / days are needed, then they work through it. The reason for the 48-hour ‘time-limit’ is that the State does not want the medicine which hastens death to be ‘out there’ for any length of time. It needs to be closely controlled. It is not intended in any way to make the patient feel like they need to ‘use-it-or-loose-it’.

The appointment was tough. It was hard to hear my friend speak to her anxieties – to speak to her concerns, in a way that is very different than when we are talking. It is one thing to say it to a friend while walking in the woods, and a whole other to express it to your physician in the doctor’s office – it just is. It was especially hard to listen as my friend had to read aloud the declaration before she signed it, and before I could witness it.

It was an emotional day, but an important one … and one in which I am honoured to be the friend who was there to help. Hugs.

 

Living Pathography – An Open Dissertation blog

I have decided to brush off the domain I had originally setup for my dissertation. I have much better sense of where the project is going – so I’m using that blog as a way to share my writing as I write, and my field notes and ideas as they occur to me. It is a living blog.

David Elpern at http://pathography.blogspot.com/ defines pathography as “a narrative that gives voice and face to the illness experience. It puts the person behind the disease in the forefront and as such is a great learning opportunity for all care givers and fellow sufferers.” I chose Living Pathography for the domain name because all the current work on pathography relates to books rather than blogs. I think of blogs as living books – ones that can be updated regularly – but also ones that contain reflections of the experience as it is happening, rather than the post-processed reflective version that is presented in book form. There are less constraints when blogging, allowing the writer to express illness in a raw and authentic way, which provides a layer of learning that can be lost when the experience is distilled into a book narrative.

I will cross post things here that may be of interest, but also, there are things that happen on this blog that are completely unrelated to my dissertation. I’ll try to keep the academic language (like the above paragraph) to a minimum on this blog, respecting that the focus of this blog is my emotional and physical journey.  The new site will focus on my dissertation as well as other academic papers, conference presentation, or book chapters associated with health blogging.

If you are interested in following specifically my dissertation journey, I invite you to follow me at http://livingpathography.org or on Facebook at: https://www.facebook.com/livingpathography/

Overwhelmed with a huge sense of denial

As part of my PhD research, I’m reading through this blog. It is an interesting experience. I wrote the blog, but I haven’t really read it. And I certainly haven’t read through multiple months at a time, from the beginning tracing through my journey – reflecting on what I wrote versus what I now remember of that time – thinking about the things that I didn’t write about.

Today, I read a couple of blog posts from a pretty transitional time. It was my first academic conference that I travelled to after cancer – Emerging Technologies for Online Learning or #et4online. The previous years conference also happened to be the last conference I went to before my diagnosis. I wrote about my first day and how tiring it was and how I found myself negotiating my new identity, but also the second day where I laughed so hard at karaoke that my abs hurt, then went back to my room and cried.

The #et4online conference turned out to be a rather transitional conference – in that it was the conference were #et4buddy began – which has since been renamed and thrived as Virtually Connecting.

One of the things I didn’t write about was how I was really self-conscious about my hair before the conference and on the first day of the conference. In posts from earlier that month, I had written about how my grey post-chemo hair was driving me crazy to the point where I dyed it. It was thin. The first session that we did I was wearing a headscarf to cover it – but the next day I decided I didn’t care. I let go of my self-consciousness. I styled my hair into spikes because that is all I could do with it. It was thin. My scalp showed through – or at least that was my impression – and yet I decided I didn’t care. One of the reasons #et4buddy worked was because I let go of all my self-consciousness and worry, and just went for it.

Upon reflection, that was really a transformation in my self-confidence. Once I stopped worrying about what I thought other people might think about me, I was able to just be myself. I was able to let go and enjoy myself, but also to be myself with a level of self-confidence that I have never had before. I stopped caring about how other people might superficially judge me. It was like letting go of a weight that had been holding me down.

Within that same timeframe I became more aware of who my blog audience was. When I started the blog, I saw my audience as my family and friends, but also as healthcare providers. I even wrote posts specifically to healthcare providers (I still do from time to time). But, at some point, I realized that my primary audience was actually other breast cancer patients. I was sharing the details of my journey in order to help others understand their journey. I shared my coping strategies but also my decision making processes. Sure, sometimes articulating my decision making processes was so that my family better understood my decisions, but mostly it was to help other breast cancer patients make their own personal decisions.

Another area that I am noticing is my changing view of what it means to be an engaged patient and what it means to be a patient advocate. I struggled with what my advocacy was. I still struggle with what my advocacy is, and what that will mean in the future.

And yet, as I read through all this I’m also overwhelmed with a huge sense of denial. I feel like I am not living in this body. I am looking on the past three years of my life as if it didn’t all happen, as if I am not in the position that I am in today. I feel like I want to just stick my head in the sand and pretend it all way. I want to wake up and have it all be a bad dream. No, I’m not a breast cancer survivor. That didn’t really happen to me. But I don’t need to pinch myself to know that it did happen. I just need to look down at my hacked up body. I see the scar that runs from one hip bone to the other, and the numb appendages on my chest that look like breasts but don’t feel like anything. And I know that I am not having a dream. I find it funny that I write this and yet in the same breath I talk about my improved body image! But I also look at my accomplishments. I look at how I have a much healthier sense of body image. Shedding my fears of what other people think of me has made me a much more confident teacher. Pushing through recovery and regular exercise means I am hiking and swimming further than I though I ever would. I am getting stronger every day, and that is something that I cannot deny.

Feature image from #et4buddy Hangout on Air.

Yosemite and snarky comments on Facebook

As I write this, I’m thinking about our last vacation. I really noticed over Christmas that my posts were missing something. I kept thinking about the snarky comments my father used to leave on my Facebook posts. I find myself checking for the comments that don’t come. I miss you dad.


Tunnel View

Last weekend we went up to Yosemite to experience some winter. Last January at Epic Experience I tried out cross country skiing for the first time since cancer treatment. I had no idea if I could do it. I was impressed that I managed 7km and could have skied longer but we were running out of time. So, I was encouraged to think that I could cross country ski at Yosemite, this time with my husband and no limits on our time.

Badger Pass Cross Country ski area

Becky taking a picture of Scott taking a picture

It was warm out, and we forgot the wax at our condo, which meant we opted for a no wax skies. This turned out to be a really good choice as the conditions were typical spring skiing conditions – which means the snow in the shade is much colder than the snow in the sun, and this variability makes it really difficult to find the right wax for wax skies.

Not exactly well marked or used trails.

At one point during the ski we decided to explore some of the trails in the woods, rather than the groomed roadway. we expected the trails to be a little more defined and a little better marked. At several points we got lost, and had to backtrack to find the trail. Eventually we turned back the way we came, and tried another route.

Becky navigating a small hill on an unmarked trail (another word for being lost)

It was a lot of fun but turned into a much longer ski that planned. In the end we skied 16 km (10 miles). I was exhausted and very much pushed myself to the ends of my energy. But I did it. I was a lot stronger than I’ve been in a long time. I skied further than I would have the first time out before cancer. My regular 2-3 hour hikes and hour long swims are making a difference.


Upper and lower Yosemite Falls

On the second day it was overcast. It has rained in the night. Rather than skiing, we opted for a hike. Again, we ended up on a path that was more challenging than I expected. Because we were hiking in snow, we were wearing winter boots – which turned out to be useful when negotiating various puddles and small streams of snow melt that crossed the path. At one point we came to an area where the path was completely flooded out. The route around the path involved climbing up a large rock (about 12 feet tall) and then down the other side. The hiking was technical but I managed it quite well. I certainly pushed myself. We hiked 9km around Mirror Lake. It was a beautiful hike, made very pretty by the snow.


Mirror Lake


Where’s Becky?


Mirror Lake from the other side

Feature image and all photos taken by my husband (c) Scott Drennan

Lupron woes

I’m coming to the end of my three month cycle with lupron. That is, every three months I get an injection of lupron to suppress my ovaries. This is part of my cancer treatment – hormone therapy. What I am finding is that as I come to the end of the cycle I get really moody. I get really sad, but also get frustrated really easily, and I find myself yelling at idiot drivers when I’m in the car. I am self-aware enough to see these things happening – to know that it is not my body in a normal state.

I checked in with one of my support groups to learn that this is not an uncommon phenomena. It is something that annoyingly, doctors dismiss as if it is all in our heads. In many ways, all we need from our doctors is recognition/validation that the symptoms we are experiencing are normal. A simple, that sucks, I’m sorry to hear it but there isn’t much we can do about it would work. Not a blank stare and comment about having not heard of that happening before .. because really, it happens. When doctors don’t acknowledge the issue, patients stop reporting side effects. It is known as learned helplessness. If you appear to not care about the experience, then we will stop telling you about it. But this is not a healthy doctor-patient relationship. In a healthy relationship these things get acknowledged.

Anyways, I’m writing this in part because I’m moody as hell so if you interact with me in the next two weeks you may notice that I’m a little on the crazy side. I’m also writing this because some of my readers are also on lupron. I want to validate for them that these feelings of moodiness are a normal side effect. I have not been that careful of ensuring I get the lupron exactly on time – that is I usually get it a week or two late. My oncologist tells me that is ok – however, if these mood swings are going to be the norm in that period of time then I’m going to be more careful about getting the shot exactly on time. Because the sadness in particular sucks. It drains me. It makes it difficult for me to concentrate and get work done. I really don’t need two weeks of it!

Feature image: By FvasconcellosOwn work, Public Domain, Link

Driving, chemobrain, and respectfully acknowledging side effects

While driving back from a nice long weekend at Yosemite, I found myself singing along to music while simultaneously navigating through an interchange of highway on and off ramps, to get to the right place. What struck me then, was that I must be getting back to some form of cognitive health.

Cancer plays havoc on your cognition. Furthermore, chemo can totally screw things up. Chemobrain is real! In reflecting on my chemo brain, I often used what I could or couldn’t do while driving as a gauge to how I was doing. At first, I couldn’t drive with music. Then I couldn’t drive with anyone in the car. One particularly scary drive was when I realized that I was relying on everyone else to not hit me, as I couldn’t react to what was happening around me. I knew then that I had to stop driving until I was done with that evil chemo regime.

But after chemo, and then surgery, I found my ability to drive come back slowly. First is was driving alone without music, then driving with music occasionally – like on the highway when I didn’t need to do any navigation, then driving with someone else in the car but no music, etc. So, it was amazing to find myself in a position of driving in the car, navigating through on-and-off ramps, and singing along to the music.

I was thinking also about one of my pet peeves. When I say something about “chemo brain” and someone dismisses it as “aging”. Like when I try to explain that I cannot find a word and they say “I have that too, it is just aging” … and then I need to explain that chemo brain forgetting a word is actually very different than aging. Age related forgetting (or actually the forgetting that happens to many people) is like a word is at the tip of your tongue. With enough concentration or thinking, the word comes to you. I get that too. But chemo word forgetting is different. It is more like the word is completely gone. Until someone says it, or until you read it someone else, it doesn’t just spontaneously come back to you. It is very different, and if you haven’t experienced it you will not really get it.

But the pet peeve isn’t so much about the lack of understanding of the actual thing – is it more the dismissing of my issue as if it were not important. It is said as a way to silence me (or the person saying it). So rather than acknowledging and saying something like “that must suck”, it comes across more like “stop whining” or “what you are feeling isn’t real”.

Unfortunately, too many of the challenges with being a young women who has had hormone positive breast cancer is that too many of my symptoms and challenges look like “aging”. They are dismissed as ‘aging’ related – by doctors, by friends, by family. It happens all the time. The thing is, I shouldn’t be having these side effects at my age! They are not age related! They are breast cancer treatment related. That is different. There may be nothing that can be done about them, but they are still there and they are still real. My advice to friends, family, doctors, etc. is to acknowledge it. A simple “that must suck” would do.

So, the cognitive declines associated with chemotherapy are starting to wear off. I’m starting to be able to deal with things that I couldn’t deal with during and immediately after treatment. Slowly things are getting better. Now, this off course is just in time for me to be going back on my next regime of hormone therapy – which blocks my body’s ability to produce estrogen, and mimics a lot of the symptoms of menopause but to a much higher, more severe degree. So, I will be experiencing a lot of what might look like ‘normal age related symptoms’, but they won’t be ‘normal’. They will be treatment induced. And if I complain or state that I’m having a challenge related to chemo brain or cancer treatment, don’t dismiss it, acknowledge it. Tell me it sucks, and then we can move on to having a normal conversation!

Feature image (c) Rebecca J. Hogue