Author Archives: Becky

The complexities / interplays of trust

One of the “themes” that has emerged in my dissertation study is that of “learning about the disease”. When I look at the types of information I shared on my blog between diagnosis (June 12) and active recovery (Feb 3) is that of learning about the disease. I’m looking at the different ways in which I found myself learning about, and sharing knowledge about breast cancer. There isn’t a simple path – first you learn from A, then B, then C – it is a whole lot more complicated than that.

I have commented several times that a friend very early on in the journey has recommended that I should “decide who I trust, and trust them”. I use that mantra quite regularly when I am second guessing what I think might be happening.

Add to it the complexity and lack of clarity – you see, cancer treatment, and more specifically breast cancer treatment, isn’t clear cut. Yes, there are certain protocols that are followed in certain circumstances, but there is a whole lot of complexity – and that complexity means that there is never one and only answer. As we like to say in the design world, there isn’t one ‘right’ solution, it is just that some solutions are better than others.

Now, if we look at all the different places I found information:

  • My body
  • Google (open searches)
  • Doctors (primary care, radiologist, breast surgeon, oncologist, plastic surgeon … )
  • Nurses of variety of sorts
  • Test results (pathology, MRI, ultrasound, blood tests)
  • Organizational websites (e.g. breastcancer.org)
  • Blogs
  • Face-to-face support groups
  • Online support groups
  • Friends
  • Family

The list goes on. In some cases these different information (and advice) sources overlap. In others they don’t. I had to learn how to discern not only where I could get information, but also what types of information I could get from where, and how reliable that information was. There were so many nuances to information that I didn’t always appreciate at the time, and some that I still don’t appreciate.

Three years later, although I have a much better sense of information and where to find certain types of information – I’m still finding the ground constantly changing. I think I know something, then something happens that causes me to question what I’m thinking. I doubt. I freak out. I go into high gear trying to get answers. I trust someone / something. I relax, but only until the next time it happens. I only hope that there will be longer gaps between issues.

I have those of my healthcare team that I trust. I also hear stories, horror stories, from others that have me questioning – not my care team directly, but some of the facilities around my care team. Can I trust that pathology report? Can I trust the radiologist? Hearing the experience of others sometimes makes it more difficult to trust. I hear how others put blind trust in the system, and that trust failed them. I find myself being thankful for not having been so blinding in my trust. But then I also find myself stressed over things that I should not be. I find myself questioning things I need not question. The danger of being a well informed patient in part comes when the doctors forget to tell you things assuming you already know. Or when you think you know things so you don’t ask. Or when you doubt what you are being told. Blind trust can be dangerous; however, intentional trust can be liberating…the goal is to distinguish between the two.

Infusion-fatigue

As I work through my research data coding, I’m having to read and re-read and re-read… the BCBecky blog posts from the beginning through February 3, 2015. Some of the posts are particularly emotional, as the memories come flooding back. In others, my memory of the time is totally different.

When reading about my chemotherapy experience, and especially the Taxol experience, I realized something that no one told us when we were making our decision about chemotherapy options. We decided on weekly taxol because we were told it had less side effects (smaller dose). Since we live close enough to the infusion center, we figured that anything that reduced the side effects was the better choice.

Looking back at it, I find that I wished I’d selected the chemo every 2-weeks (higher dose, but only 8 treatments rather than 12). At least I think that was the option – something like that. The key reason I wish I made the other choice was that I found that 1 week wasn’t giving me enough time to recover before the next infusion. But now, I have a different thought – perhaps what I was suffering from was infusion-fatigue.

I had read about patients experiencing surgery-fatigue, that is, not wanting to deal with yet another surgery, such that they delay or don’t complete reconstruction. That was part of why I opted for immediate nipple-sparing reconstruction – I managed to finish with only 3 surgeries. I didn’t run into surgery-fatigue.

When I consulted with pain management, the doctor mentioned the idea of pill fatigue. One of  the key reasons I couldn’t manage the dose of gabapentin they recommended was because it involved taking too many pills too many times per day. Fortunately, there is a 24-hour time-release version, which costs a fortune, but is something that I can and do take. It has been life altering.

This got me thinking about one of the factors in choosing a chemo regime should be the consideration of infusion-fatigue. This explains what I was suffering from in my post Grumpiness and Mentally Preparing. It is a consideration that I do not recall ever being mentioned.

SF Pride

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Yesterday, my hubby and I and friends got a chance to march in the San Francisco Pride parade with the Bay Area Young Survivors – and organization that provides support for those diagnosed with breast cancer under the age of 45 (ish). The group is an intentionally open organization – often looking at which gender pronouns we use, and how our language choices are either inclusive or not so much. Marching in Pride tells everyone who sees us that we are a welcome organizations.

Our signs were interesting – in addition to the equal rights posters, we also had many saying things like “F$ck Cancer”, as well as a memorial picture of the very remarkable Janet Sollod, and a few more about the impacts of healthcare.

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What really struck me was that when the crowd saw us, they often switched from cheering to clapping. It was really powerful.

This was also my friend Lori’s birthday weekend – so I’m so glad I was able to march along beside her.

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Looking for theme validation help

One of the challenges I’m having with my research is with the identification of themes within the blog posts. I’ve identified 10 key themes that I’d like use, but I’m afraid that because I’m coding my experience, I’m reading more into the blog posts than what others see. In this way, I’m too close to my data.

I’m looking for a few people who would be willing to help with validation of my theme coding key. What this involves is reading how I defined the themes, and then reading 20-30 blog posts (could be less if this is too time consuming) and indicating which themes occur in the given posts. Then, we would have a conversation (Skype or Zoom, or email) to discuss any areas where you see things that I missed.

If you are interested in helping, please leave a comment, tweet or email me.

Celebration or not …

Yesterday marked three years since the radiologist said the words “I’m sorry, you have breast cancer”. It is hard to believe that was three years ago.

I had a doctors appointment yesterday. At one point I broke down in tears, completely unrelated to the appointment. The doctor asked me what was up. I explained that it was the day – three years since diagnosis –  not anything about the appointment. She told me that I should celebrate. That I should find some way, even if it is just a small way (like throwing a rock into a stream). She talked about the importance of acknowledging being alive.

I am struck by this. I don’t know what to think about it but the words keep running through my head.

I did do one thing yesterday that was a bit of a marker of the day. Since I was already up at Stanford, I walked over to my tree – the tree where I took my picture before every infusion and doctors appointment throughout treatment. It has been months since I last saw the tree (might even be a year). I don’t see my doctors up at the main campus that often – mostly I see them at South Bay which is about the same distance but so much easier because I don’t need to spend 15 minutes walking from the parking garage to the clinic – and the parking is free. I’m also having fewer doctors appointments. I’m reducing the frequency of my visits. That too is forward moving progress.

I took this picture – perhaps that is my celebration – or perhaps this blog post is:

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I have hair now. I get lots of comments from my doctors on its length. It is much longer than it was before cancer. What you don’t see is that I don’t really have eyebrows. They didn’t really grow back – at least not enough to be functional (they don’t keep the sweat out of my eyes), and not enough to frame my face when I’m not wearing glasses. Anyways, that is a minor annoyance. I am learning to live with, and be happy with, my new body.

And the words “you should celebrate being alive” keep ringing through my head. I cannot help but wonder if that celebration is more for the doctor – their achievements in keeping me alive – then it is a celebration for me. I tried to explain that no, today is not the day that I celebrate. But I couldn’t get it out to really explain. The ‘celebration’ or ritual is much more around December 17 – the day the last bits of known breast cancer were removed from my body. That day is significantly more important than the day that I heard the words that haunt me “I’m sorry, you have breast cancer”.

Do you ‘celebrate’ or acknowledge that day you were diagnosed? What is your ritual?

Carlos whoever you are, you are an ass!

This afternoon, after travels (hers then mine), progression (hers), stupid chemo side effects (hers), and colds (mine), Lori and I finally managed to get our schedules lined up for a hike. We hike for a variety of reasons. We both enjoy it. Hiking helps Lori feel better when she is having a crappy day (or week or month), and helps replenish her energy when it is running low. It is especially important this week, as she prepares for radiation treatment for a tumor in her spine (which will hopefully mean she is in less pain, and up for more wonderful hikes).

It has been a while, since we last hiked. Lori’s latest progression means she is taking a higher dose of the chemotherapy she is on. One of the side effects is that it makes the skin on her hands and feet really thin (she no longer has fingerprints, and informs me that one reason we have prints in the skin on our feet is so that we don’t slip on wet surfaces – one of those things you don’t realize until you no longer have the prints). The thin skin on her feet has led to cracking and bleeding. This has made it difficult for her to walk without pain – that and a particular “hot” tumor in her spine. With this in mind, we opted for the easier hike. One that involves parking in the lower free parking lot, and follows the creek on a well established trail. This trail also has lots of benches, strategically placed, which made it the ideal hike for me when I was recovering from breast cancer surgery and chemotherapy. The lower parking lot is almost always full, however there are a couple of handicap spots which are often open. I used to park there all the time when I had a permit. Being able to park there meant that I could walk/hike. Otherwise, I would not have been able to do it. I no longer have a permit, but Lori has one. It means that we can hike places that otherwise we could not – for lack of a parking spot.

I like hiking with Lori because I enjoy her company. We both seem to hike at about the same pace. We spend the entire time chatting away, and often don’t notice how far we hiked. Today was one of those days. We ended up hiking 5 miles (8.5 km) and forgot to take a selfie at the top of the trail – so we took one at the bottom.

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As we were driving out of the parking lot, we noticed that someone (Carlos the Ass) left a message, tucked in on the wiper of Lori’s car. We can only guess that it was written as we were heading out for our hike, as it is the only time people would associate us with the car. Anyways, Carlos the Ass writes “Hello, We are impressed with your hiking skills. Not too shabby for being ‘handicapped’ and all. Best Carlos [the Ass]”.

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Lori gets this a lot. She doesn’t always “look” sick. At our other favorite hiking place, we have gotten dirty looks, and sometimes even snarky comments made under someones breath – intentionally just loud enough for us to hear. Usually when that happens Lori blurts out something that hopefully makes the person feel like sh## for being so insensitive. For example “I’d gladly trade in the terminal cancer for the parking spot”. Fortunately, she no longer cares. She doesn’t take sh## from anyone anymore. Her life is going to be too short to deal with assholes.

It still annoys me. It annoys me enough that I had to write this post. Disability is not something that is clearly visible. Interestingly, one of our many discussions on our walk was the challenge with how dealing with airports when standing in line is excruciatingly painful – and not in the annoying sense, in the physical sense. There is a lot of ‘but you don’t look sick’. There is a huge misperception of what sickness looks like. People seem to like judging others.

Anyways, back to my rant about Carlos the Ass. It seems that he felt it necessary to find a pen and a scrap of paper (it was written on the back of a grocery store receipt that he clearly had hanging around his car). It extra pisses me off because it was Lori’s permit – Lori has terminal cancer and no clue if she will be alive in 3-6 months. Every cancer patient I know (terminal or otherwise) would gladly trade in the handicapped permit if it meant they didn’t have to deal with cancer, treatment, and its aftermath.

So please, don’t be an ass. There are way too many of them in this world already!

SendIt! Photos from my surf weekend – @senditbrand

The weekend before memorial day (Victoria Day long weekend in Canada), I went to a cancer camp to learn to surf, hosted by the Send It Foundation. I have always wanted to learn to surf, so this was a bit of a dream come true for me. The surf was freezing, but the opportunity to try was a lot of fun. I realized at the trip that I need to be in much better shape to actually surf. I need to be able to jump up into a squat position from laying down. It was a struggle, but also a motivation. It has helped to motivate me to try harder at getting my body back into physical shape. Although I had no hope of getting up on my feet, I did manage to get up onto my knees a couple of times.

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Scott pointed out that I had two heads. The head behind me was my surf instructor. Note that she is wearing a full head wetsuit, cause the water was COLD. I clearly was rather focused.

After a morning playing on the surf, we went out standup paddle boarding. I had done it once before in Niagara-at-the-Lake (where the water was really warm). Here, I’m wearing a wetsuit so I don’t freeze if (when) I fall in.

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I did well going down the lagoon, but then couldn’t get back. I was fighting both the wind and the current. I ended up on my stomach being pulled back by the rescue kayak. I then traded in my standup paddle board for a position as a rescuer.

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This was my first time kayaking since surgery. I had no idea if I’d be able to do it all, so I was glad to be able to try it out. I actually did pretty good, but my body (especially my upper body) was tired from the morning of surfing and the standup paddle boarding.

We did a second day of surfing, and some exploration of the town of Stinson Beach, the next day – however, the professional photographer wasn’t there, so I didn’t get any nice photos.

In the end, I did manage to try out all the things I had wanted to – and it opens more doors for me. I know now that I can kayak, although I don’t think I’d be comfortable in a single kayak just yet (unless there was no wind). Back in 1999, my hubby and I spent a few days kayaking in Southern Haidi Gwaii, and have done several other sea kayak camping trips, so I was not unfamiliar with kayaking (and how to paddle correctly), mostly I didn’t know if I could do that with my post-surgery body.

I am very glad that Send It let me join them. I’m a little older than their normal crowd. There is a challenge with being diagnosed with cancer in your 40s. I’m considered a ‘Young Survivor’ from a breast cancer perspective, but a lot of the charities that provide adventures to cancer survivors use 40 as their age cut off – so they aren’t open to me – unless they make exceptions. In this case, Send It made an exception, and I am grateful for it.

 

National cancer survivor day #idontgetit

I may have said this before, but … I just don’t get it. I don’t understand what it is I’m supposed to be “celebrating” on this day.

Yes, I am a cancer survivor, but all this day does is highlight how my friends with metastatic breast cancer will not survive – they will not be cancer survivors – as their cancer is terminal.

I only know of it because I see it on my Facebook timeline.

Do any of my cancer survivor readers get this? Is there something special you do for National Cancer Survivor Day?

Not fighting a battle – the closure to the narrative is death itself

Recently, I read a book chapter by Arthur Frank (2009) titled “The necessity and dangers of illness narratives, especially at the end of life”. It got me thinking.

One of the pet peeves among many cancer bloggers as well as those with metastatic breast cancer is cancer as a war metaphor – that is, the fighting a battle with cancer language. Many people don’t like suggestion that those who died from breast cancer “lost”, as if they did not try hard enough, as if breast cancer was something that involved winners and losers.

In the article Frank says that “narrative thinking embeds the idea that obstacles must be overcome for there to be a closure. Moreover, obstacles are necessarily understood as a personal test, conveying a sense of individual victory or defeat.”

If I look back on my experience, there was a time where I identified as a warrior. The metaphor worked. I was in chemotherapy and suffering from a variety of side effects. I needed to fight to keep exercising and do my best to keep strong. The war metaphor worked for me. It motivated me. In reflection, I see that it worked because I needed the sense of closure. I needed to know that the immediate experience I was having would end. To mentally make it through all the suckiness that was chemotherapy and then surgery recovery, I needed a sense of ending. So the war metaphor gave me a sense that there would be closure to that part of my life’s narrative.

But now, after acute treatment for early stage breast cancer, I feel that the war metaphor no longer works. It doesn’t work for my friends who are metastatic and will die from this disease. But it also doesn’t work for me. With survivorship, one of the things I am coming to terms with is that there is no sense of closure. There is no clear ending. The war metaphor no longer works for me. I’m living with all the side effects of treatment, and with all the fears of the cancer coming back, or another cancer happening. I do not expect that there will ever be that pretty closure that narratives seek. But I also think that is part of the point.

It got me thinking about why the war metaphor works for some people. With the war metaphor there is an a sense of ending, a sense of closure. But for most people with breast cancer, the only ending or sense of closure is death. It is not a narrative that is meant to have closure. The need for closure takes away an aspect of the experience that is paramount to those who are surviving after breast cancer treatment. You don’t know that you “survived” breast cancer until you die from something else. And those who do die from breast cancer, don’t lose a battle, they die. The sense of closure in the narrative is death. It doesn’t need to be a battle lost. It shouldn’t be a battle lost.

The freezing surf

This weekend I had the opportunity to learn a little about surfing. I first learned about the Send It Foundation from the Bay Area Young Survivors (BAYS) resource website. Sent It provides opportunities for young cancer survivors to get out in nature and do something – this weekend that something is surfing, stand up paddle boarding, and kayaking.

I was worried a bit because I’m a little older that most of their regular campers. Actually, this weekend I was the oldest one there. But I could not turn down the opportunity to learn how to surf. I have always wanted to try it.

The weather was beautiful but man that water was cold! Even the surf instructors said that the water was exceptionally cold. It has been windy the say before, so it stirred up the water from deeper in the ocean, dropping it by a few degrees. Someone said it was 50 Deg F (10 deg C). All I know is that it felt like ice on my hands. Luckily, our lead surf instructor decided that in addition to wetsuits, we should also have booties. They made a huge difference. I tried going out on Sunday without booties and could get in very far. My feet felt a “brain freeze” type sensation. Did I mention, the water was COLD.

Overall, I had a hoot. In addition to learning a little about surfing, and riding a few waves on my stomach (I don’t have the mobility to stand on a surf board – at least not yet), I also got a chance for a little standup paddle boarding and kayaking. I really wanted to try out kayaking as it is something we used to do all the time. It was nice to validate that I could do it – although on Sunday my pecks were screaming at me.

On Sunday morning my body was starting to hurt (in a good way). By the afternoon, I was finding every opportunity I could to stretch out my shoulders.

I had a lot of fun this weekend – Thank you Send It Foundation, and especially Katie and Caroline, for giving me the opportunity to learn what it means to Send It!