Author Archives: Becky

Re-grounding

I cried the entire drive home from my oncologist appointment on Monday. I’m not sure if part of it was that I also had my Lupron shot, so my hormones might have made me a little more emotional than usually. But at least part of it was that I felt like the ground was pulled out from under me.

At my last oncologist appointment (5 months ago), I had asked about my change of recurrence. I didn’t like the number. I had hoped for a 5-10% number, but instead I got a 20-30% number. That shook my foundation. The mental tool I was using to hold back the fear of recurrence got disrupted.

Monday I asked about hormone therapy. You see, I’m only partially on hormone therapy. I’m doing the Lupron thing, but not the AI thing – at least not right now. Last time I tried the AI it was a bit of a disaster. I lost 3-4 days of work because I couldn’t think. I had to stop.

My oncologist talked generally about hormone therapy providing protection beyond the time you take it. They don’t really know why, but if you take it for 10 years, then the protective effect seems to be something like 15 years – so it lasts longer.

He also talked about the importance of balance and quality of life. He said that if you are low risk for recurrence and have bad side effects, then the decision is easy – stop taking the meds. But, in my case it isn’t so clear. He grouped me in the high chance of recurrence group, but also horrible side effects. He did highlight that some people just cannot manage hormone therapy. They don’t know why it causes such bad side effects in some people but not others. He highlighted that it isn’t a sign of weakness on my part. I should not feel bad that I get horrible side effects. But the part of the conversation that through off my grounding was that of putting me in the high risk category.

I also asked about neuropathy. I’m 2.5 years out, so this means that any changes will be small – that is, that I can not expect to have any drastic improvement from what I have now. So, my fear of the neuropathy being permanent seems to be the reality I’m destined to live with.

My oncologist agrees that we should be introducing one change at a time. In the fall I’m going to be changing my mental health/side effect meds. The change will hopefully also help with neuropathy and arthritis back pain. Once that change has happened, I’ll again look at re-introducing the AI (aromatase inhibitor – if you think of menopause as a reduction in estrogen levels, the AI brings the estrogen levels even lower – and since my cancer was fed by estrogen this in effect starves it). There is some hope that the new mental health med will make it possible for me to introduce the AI with limited side effects. We’ll see.

But all this has left me in need to reground myself. Hearing the “high risk” makes it more difficult for me to think about the future is a positive way. On the other hand, it also reminds me of Carpe Diem – and the need to focus more on the here and now.

I’m also feeling strong at the moment. I biked 30km yesterday. I haven’t been able to do that in a long time. A couple weeks ago we hiked 10-miles. Again, that is a huge accomplishment. So, physically, I’m starting to feel strong again. I just need to find my grounding mentally.

I’m not brave – another cancer war metaphor

With John McCain’s diagnosis with brain cancer, we are seeing discussion about cancer and the war metaphor in the media. My social media streams are full of articles like this one Obama’s tweet to John McCain about his diagnosis was the last thing cancer survivors wanted to see. The author makes an important point about how some of this encouragement is more for the benefit of the speaker than the recipient. It is the voice of someone with healthy privilege trying to find something to say that will help the healthy person feel better about the illness.

I found at one time during my treatment that the war metaphor helped me. It was not someone else telling me to fight, rather it was an internal fight – a mindset that helped me get out of bed in the morning and go for a walk. At the time I decided I was a warrior. I was in active treatment. It was a metaphor that I chose to use because at that time it worked for me. The metaphor worked for a short period of time during my treatment. But then it stopped working. I was no longer a strong warrior, rather I was weak and fatigued and just wanted the treatment to be finished.

The one metaphor that never really worked for me was that of bravery, which is also a variant on the war metaphor.  I’ve been told many times that the sharing I do in my blog is an act of bravery. That I was brave to be sharing my experience so openly, but also that my experience in and of itself was an act of bravery. Facing cancer and cancer treatment was in some way an act of bravery. Like I had a choice in it. Personally, I’d rather not be brave if it meant I didn’t have to go through the cancer experience.

The reality is that I don’t in any way feel brave. I never have. I even wrote about having my inner two year old having a temper tantrum because I didn’t want to do another chemo treatment. That wasn’t brave. It was real. 

Cancer is not only an attack on the physical body, it is also an attack on the mental one. The focus on metaphors at times helps the ill person to cope, but at other times it doesn’t help. There are times when it changes the focus from what the ill person needs (someone to listen to them, and to acknowledge the experience as it is really is), to something the healthy person needs in order to feel better about the ill person.

I have learned through this experience. I might have used the war metaphor before I was diagnosed. If I did, I apologize. I really didn’t understand.

I have learned to acknowledge the illness and the feelings the ill person is experience (I need to put in a plug for Kelsey Crow’s book There is no good card for this – as it is really a great way for people to learn how to help). My response to someone telling me that their cancer has spread is usually “well that sucks”. I try very hard to just listen and acknowledge the feelings the person is having. Sure, I slip into trying to be a “fixer” at times, but I also try to be aware when I do it. Acknowledgement that it sucks is often all the person needs – well that and some good bone broth, soup, food, or someone to clean their house.

One year gluten free #celiac #gflife

It was about this time last year that I was last ‘glutened’ (a term used by celiacs to describe accidental injection of gluten).

It has taken me a while to learn how to navigate in the world gluten-free. I was overly cautious – until I learned that my antibody counts were normal. Then I ventured out a little more. I found myself missing eating out. I found myself avoiding group activities that involved food. Once my antibodies were down, I realized I could not live that way. I needed to be able to reach out – I needed to be able to eat at more than one place.

I found the app “Find Me Gluten Free” (https://www.findmeglutenfree.com/) to be a life saver. Whenever I’m someplace unfamiliar and need to eat, I pull out my phone and open up the app. It doesn’t show everything, but it often shows several places that are reasonable options.

I’ve learned that most fancy restaurants can address gluten free. Any good chef knows how to handle cross contamination. Most places won’t ‘guarantee’ gluten free – I think that is mostly a US fear of litigation issue. Some are better than others at saying “our gluten free menu isn’t appropriate for Celiacs” … which is a way of saying that our gluten-free menu isn’t really gluten free – it is just an excuse to charge $2 extra to substitute wheat for something that might have been gluten-free when it was taken out the package, but isn’t by the time they are finished cooking it! Ya, that does sound a little cynical.

I have learned to ask for the Gluten-Free menu if a place has one. I still need to talk to the server and be specific about my need to not have cross contamination – but it saves me a lot of time and heartache, as I don’t then see items on the menu that sound good but that I also cannot eat. So I don’t feel like I’m missing out as much.

I am still nervous when I travel. I need to bring my own food for the plane, but also a bunch of my own food for snacks and for breakfast. I miss out on the “free breakfast” at many hotels because they have absolutely no gluten free options. I’ve suggested to several that all they really need to do is have some GF cereal that they don’t put out for everyone (in the little boxes) and hard boiled eggs are also a great GF option. That being said, I usually bring my own breakfast anyways, because I cannot guarantee of finding something, and I cannot risk not having anything.

What this means is that travel takes a whole lot more energy than it used to. Attending conferences (which is something that I used to love to do) is also so much more challenging, that I find myself shying away from them. My dissertation writing has been a great excuse for me to say no to several that I was concerned about. I still do go to some, but I know that I will need to carry a lot of snacks and make my own breakfasts, and not count on getting anything for lunch – which is perhaps the hardest part – going to lunch watching others eat, or not going to lunch with the group and missing out on the social / networking time.

I thought this was to be a happy post – yay 1 year gluten-free – a great accomplishment. It doesn’t feel like a happy post. It isn’t something that will ever end. Research that came out in April indicated that they may have identified a virus that turns on celiac disease. For those that don’t know, celiac is a genetic disease – if you have one of the two genes you can get celiac – but not everyone does. Plus, if you have gene it can turn to celiac at anytime – so could not have it one year, and then find that you have it the next. This research is really promising for those who have the gene but not yet have celiac disease. It may mean that a vaccine can be developed so that those with the gene never develop the disease. That is pretty awesome news and definitely a break through.

There has been some research done on a “pill” or something you can take that might make it possible for the body to digest gluten and not have it react horribly. This would be sort of like the pills you can take for lactose intolerance. It isn’t there yet – but is also promising, in that it would make it easier to eat out without having to deal with the constant fear of getting accidentally glutened. It would make travel a lot easier.

From a home front, I’ve done a pretty good job managing to keep my home mostly gluten-free. My husband has a few things that he likes, so we segregate – but mostly he gets his gluten at work over lunch. He often goes out with his colleagues, and can eat as much gluten as he likes. I don’t think he really misses it at home – but for things like hiking, I’m sure he misses the ability to make a sandwich at home (or at the campsite – although with camping he will buy his own bread – it is just that I won’t even touch it, so there is no way I’m buying it and I do most of the shopping).

And so, there you have it. I’ve lived a year without accidental exposure. Here is hoping a make another one gluten-free.

 

I’ve stopped sharing my crisis

Yet again I went through another scare. It happens much less often now. I’d say about twice a year. Something happens. I feel a pain or a lump or a bump – and my mind spins out of control. I get overwhelmed with fear.

It started a couple of weeks ago when my family doc found a swollen lymph node in my neck. This is actually quite common when you have any kind of infection. It is your body doing its job. I couldn’t feel it. I wasn’t sure what she was feeling. She tried to show me, but what I thought I felt isn’t a swollen lymph node – but it led me down that path. She was so sweet when she said, “if it is still there in 1-2 months I’ll order an ultrasound, and if it shows something I’ll refer you to an ENT for a biopsy”. Then she whispered “to rule out cancer”. It was so sweet because she didn’t just blurt it out like some doctors do. And she didn’t call is “C-A” instead of using the word. I confirmed that it was most likely a normal infection kind of swollen and nothing to really worry about.

I also had a new set of back MRIs. I’m seeing the spine specialist at UCSF on August 1st, and I wanted to make sure I had the latest information.

When I picked up the CD (I always order the CDs so I have a copy, but also needed to get a copy for UCSF), and got home, I had an all out panic attack. Chest pain, trouble breathing … I was able to sit down and calm myself down. Then I looked at the CD and the report was not on it. That annoyed me. I could see what the radiologist was pointing out, but I couldn’t tell why. I could compare it to my last MRI (almost a year ago), but without the interpretation I couldn’t tell. That freaked me out. I emailed my family doc (the one who ordered the MRI), but had to wait through the weekend for the reply. She sent along the results. The things that I was freaked out about are nothing. It is an incidental finding and it confirmed that there has been no change since the last MRI (many people have some cyst or something in various places in the spine – they are totally benign and normal). The new incidental finding is a cyst behind my kidney – I get an ultrasound of that next week. Again, this is another one of those “normal” things, that is an incidental finding from the MRI. It wasn’t there last year, but is there now, so they will look at it with the ultrasound.

But then there was this lymph node in my neck. And then I though I felt something in my under arm. And a couple days later, I thought I felt something in my underarm again. I freaked out. I did not sleep well. I emailed my oncologist and he ordered an ultrasound and biopsy if necessary. That biopsy bit freaked me out. Fortunately, I was able to get in to see my oncologist’s nurse practitioner yesterday, and he did an exam and confirmed that there was nothing there. He felt nothing at odds during the exam. I pointed out the neck lymph node – he said if he tried hard he could feel it, but it wasn’t anything that popped out as worrisome. He ordered an ultrasound of it mostly because I was crying and it freaked me out.

The crying was mostly a release. It was the letting go of all the fear that had built up over the last couple of weeks.

Now, I’m annoyed at myself for this whole episode. I want that whole cycle to stop happening. Fortunately it isn’t that often anymore – maybe twice a year. I try very hard to convince myself that it is nothing, but it doesn’t always work. I’m a little afraid of what this will mean when I move back to Canada – will I have the easy access to my oncologist for that immediate confirmation that there is nothing to worry about? I cannot work when I’m that state of fear. I cannot focus. I have trouble sleeping. It becomes this horrible vicious cycle – the fear feeding on the lack of sleep, and the sleep not coming because of the fear.

Back to the point of this rambling blog post – I don’t share my crisis anymore – or at least I don’t share them while they are happening. I wait until they are resolved. Then I write the post. This is in part because I don’t want my loved ones to be afraid. I don’t want them to experience that fear that I have. I need them not to – because I need those around me to be ‘normal’. To not share the fear, but also not dismiss it, or not try to convince me that everything will be fine. I need to convince myself that everything will be fine. Hearing it from most others doesn’t necessarily help. Hearing it from the right other (usually an oncologist or nurse practitioner in oncology) does help.

Everything will be fine. It is what it is and that is OK. Now on to my regularly scheduled programming …

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

sfpride

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!