Category: Uncategorized

This morning I found myself struggling to get moving – then it occurred to me, I’m feeling fatigued. I haven’t felt this type of fatigue since AC chemo. I’m encouraged by the fatigue. During AC chemo, I was able to combat the worst of the fatigue with exercise.

The challenge I have now is exercising with neuropathy. This whole neuropathy experience is nothing like I expected. I didn’t expect neuropathy to come with pain. Now I’m finding that neuropathy is coming with tense muscles. What is happening when I use my numb feet or hands is that my calves and forearms get really tense.

Not being able to drive is really making self-care more difficult. Yes, that is a bit of an excuse, but only a bit. I could always take the VTA (the train) or use Uber (like taxis), or ask someone for a ride (I have been doing that a little more often than I’d like) – but that is a barrier to getting out. There is a loss of freedom that happens when you cannot just get in the car and go someplace. I am hoping that my inability to drive is temporary … and that as the effects of taxol fade, my ability to drive returns. For now, I’ll start with walking – if I can walk without visual cognition issues, then I can consider a short drive (avoiding highways) … hopefully by the end of the week.

The good news is, the fatigue is familiar – it is something that I know I can manage – I have a strategy to deal with it.

When I was first diagnosed with breast cancer I discovered that many people in cancer treatment participate in clinical trials. I wanted my experience to be meaningful, so wanted to participate in research in some way. Unfortunately, the bilateral nature of my disease meant that I didn’t qualify for a trial relating to chemotherapy (which in the end, was probably a good thing – who knows).

So, when asked if I wanted to participate in a trial that measures cell free DNA (cfDNA), I was happy to oblige. From my perspective, it only involves providing blood samples at four different intervals (when I’d likely be having blood checks anyways). I had recently read about the cfDNA relating to other cancers and metastatic disease. The question is, is there a relationship between cfDNA (that is tumor cells in your blood stream) after surgery and the presence of cancer in your body? In some cancers, cfDNA post surgery has been shown to correlate to disease progression. What this would mean is a blood test after surgery could indicate the likelihood of disease progression – which would in-turn allow for more or less drastic treatment. It would help cancer patients and their care teams make more informed decisions about treatment.

Unfortunately, participating in the trial does not mean I’ll know anything about whether my blood has the cfDNA or not (or more accurately, to what degree my blood has cfDNA) – which is probably a good thing, as we don’t actually know if it is a marker or not, and I wouldn’t want to be making treatment decisions based upon something that might or might not be relevant. I’m just happy that I can do something to help further our understanding of breast cancer progression, and it is pretty cool that I had heard about the concept prior to being asked to be in the study.

Yesterday I attended my first breast cancer conference – hosted by  Bay Area Cancer Connections. They had several really good speakers. I tweeted the sessions I attended (Storify embedded below).

First I should begin by saying it was a good conference. I learned a few things, the venue was great, the food was great, and some of the displays were great (Thanks Lynnette at MyBCTeam for the Burt’s Bees essentials kit!).

In reflecting on the conference, there are two things that disappointed me. It lacked opportunities for making social connections and I left the conference emotionally drained.

It was not that you couldn’t make social connections, just that it there were not facilitated opportunities for connections. Given the keynote talked about the importance of support groups, it might have been nice to somehow have the option of support groups as a break out session option. If I had the opportunity to share my experience in a small group (like the weekly support group which was cancelled because of the conference), it would have gone a long way to address the emotional draining issue – and I would have had a more facilitated opportunity to meet new people.

Unfortunately,  I left the conference in a negative emotional state (this was also the case for the person who gave me a ride home). I left feeling like I didn’t want to deal with this cancer thing anymore – that I was sick of it. Of course, I just spent all day talking about cancer – but in part this feeling was because of the structure of the conference. The conference did not end on an uplifting note – which I think would be something to consider. I think that if the conference ended with the survivor talk which used a lot of humor, then we would have all left the conference having ended the day laughing. It would have made for a better way to close off a pretty intense day.

So overall, it was a good conference. I’m glad I went.

For those of you who use Facebook, I’ve created a Facebook page that will allow you to see when I update the blog. In addition, I often post short updates to Facebook prior to posting things in longer form on the blog. I expect I’ll be using that more frequently while going through the surgery process. You do not need to be a Facebook friend to see the updates published to the Facebook page. To see the Facebook updates in your timeline, you need to “like” the page. Here is a link to the page: https://www.facebook.com/bcbeckydotcom

Recently, I noticed a transition in my face-to-face support group – in that I’ve transition from the newbie going through treatment to the experienced breast cancer patient who can answer various questions about chemotherapy. A friend sent me a book (which I recommend ‘Crazy Sexy Cancer Tips‘), which has some great advice for those with cancer and those who have loved ones with cancer (I’d skip over the fluff on diet though – I hate how people can get preachy in an area where we really don’t have a lot of meaningful research). I realized that I had some tips to contribute, so I created a couple of pages with tips (see the new menu – with tips for newly diagnosed, and tips for chemotherapy). These are works-in-progress.

OK, so back to the point of this post – I have been reflecting on social media and the type of information I get from social media. I use social media to get a sense of the ‘lived experience’ of a given treatment. When I reach out and ask, I receive experiences from others as well as a boat load of advice. This information is often very useful in helping me better gauge what to expect, but also in helping me ask questions of my healthcare team. This in-turn reminds me of one of the best pieces of advice that I received early on ‘decide who you want to trust‘. I’ve decided that I trust my oncologist and my surgeon. This means that I can hear advice from various outlets (social media, friends, support groups, etc) and use that information to pose questions to my care team. From there, I can then remind myself who I trust, and take their advice.

I find myself regularly having to remind myself that I’ve decided that I trust my oncologist and surgeon – because information from social media can be very disproportionate. What do I mean by disproportionate? When you ask about potential complications with surgery, you are going to hear a lot about complications. You won’t truly understand how rare some of those complications are – because the people drawn to social media to share their experiences aren’t typically people who have had ideal experience (those people don’t feel like they have anything to share) – so a disproportionate amount of what is shared is the exception to the rule rather than rule itself (at least that is what I believe – might need to do a study to test this hypothesis). My point is, that my surgeon and oncologist provide an opinion that is grounded in evidence and experience – where social media provides anecdotal evidence. As an engaged patient, both are important. I need the social media information to appreciate the lived experience (before it is my experience) and I need the evidenced-based advice that my specialists provide. I do, however, think that if I had not decided who to trust, I’d have a more difficult time navigating my way through treatment.

I’m learning a little to be an American within the healthcare system. Today, I asked for a supervisor.

You see, I had an appointment. The online system showed my appointment as 9:15. I was told to arrive 30-minutes prior to my appointment (which is a bit excessive). I arrive 25-minute prior to my appointment (8:50). So, when I was still waiting at 9:30, I went to talk to the receptionist. Anytime I’m asked to wait more than 15-minutes, I want to know why I’m waiting (that is a lesson I learned being here – in Canada I would just wait in silence – it is interesting how this goes so against my ingrained behaviour). I found out that my actual appointment was at 9:45! So, the online system had already added 30-minutes, and the person who made the appointment for me added another 30-minutes. And this is in part, why people spend excessive amounts of time waiting at Stanford!

The problem is, that it is not consistent. The folks at Mammograms, Ultrasound, and Interventional Radiology add the 30-minutes wait time to the online system – so your appointment is actually schedule 30-minutes later than it says on the system. The folks who do MRI do not. So, as a patient, I have no idea whether I should be showing up at the appointed time or 30-minutes before the appointed time … and if 30-minutes accounts for parking, tell me that .. cause it doesn’t take me 30-minutes to park … Scott drops me off, and he parks .. so there is 15-minutes I don’t need added to my pre-appointment time.

So today, I asked for a supervisor. Why not, I was waiting anyways, might as well make use of my time. The supervisor came and spoke to me. She had no idea about this problem. She said this was the first time anyone had bothered to complain – so they didn’t realize there was an issue. She promised me to look into it, and to inform various people. I felt like she was taking my feedback seriously – like they were craving to better appreciate the patient experience, and learn about ways in which to improve their process. So, I also complained that when I checked in at 8:50 – almost an HOUR before my appointment, that the receptionist did not tell me how early I was. Had the receptionist told me, I would have gone for a walk – gotten myself a second coffee – made use of the 55 minutes that I’d be waiting – rather than sitting in the poorly lit waiting room. My general rule is, if you think I’ll be waiting more than 15-minutes then TELL ME!

So, the Canadian in me feels guilty for making a stink about it, but the other part of me feels good for having asked for the supervisor (my mental state isn’t exactly great right now so I don’t always think to ask). You cannot help fix a broken system if you don’t speak up and tell people it is broken.

One of my biggest pet peeves in this whole cancer treatment process is the amount of time I spend in waiting rooms – and how that time is completely wasted. I think it is a huge lost opportunity – we need to figure out what to do with that time – how we can do something to make that time more useful – so it isn’t just about waiting.  I’m open to suggestions.

What can we do about the time wasted in waiting rooms?

How can that be used to improve the healthcare system?

Is there some way this wasted time can be harness / used to improve patient engagement?

As pink’tober comes to an end, I am reflecting on what pink means to me as someone fighting breast cancer. It is complicated. I am not against pink, nor am I for it. It is simply a colour afterall.

Pink is important for family and friends. It is a way to show support. For some, it is the only way they know how to show support. Ribbons are worn as away to acknowledge that they too have been touched by this disease.

Pink is abused by marketers who co-opt the emotions of survivors, friends, and family members in order to make more profits. Please read Ann’s post “Let the Buyer Be(a)ware” before buying something to “support” breast cancer.

Pink is important for awareness. As much as awareness campaigns fall short, and pink is overused, it has been successful on some fronts. Breast cancer does not carry the same stigma it used to – some would say it still carries stigma – and it definitely does in some communities – but in many communities it does not. Pink has meant that my husband can openly talk about my diagnosis with his colleagues as work – they too can show their support.

Breast cancer awareness has also meant support for those living with breast cancer. There are both face-to-face and online support groups. I quickly learned that although my journey will be unique to me, I am not alone in my journey. Many other women share the same struggles with decision making, side effects, emotions … all of it. I proudly wear the pink t-shirt that I bought to support Bay Area Cancer Connections, as their programs help me stay grounded when I need it the most.

I like pink. Pink looks good on me. Even before pink had the loaded meaning of breast cancer awareness, it was a colour that I chose to wear. Now, I think twice before I put on pink clothes. I hate that – I hate that one of my favourite colours now is complicated. Fortunately, pink’tober is only one month of the year. The pink ribbon will always mean breast cancer awareness, but simply wearing pink will not. I am looking forward to pulling out my pink shirts and not having to consider whether or not I’m making a statement by wearing them. Pink is simply a colour afterall.

I have new little black dots were my eyelashes use to be …

And a few were my eyebrows were too …

Seems my hair is growing. In addition to the peach fuzz that now covers most of my head, I’m starting to grow real hair. It is looking dark (rather than grey), but it is too early to tell really.

Anyways, I found the eyelashes to be particularly interesting.

Today I was reminded why I love my infra-red sauna. We almost didn’t move it to California, because finding the space for it in our small apartment is a challenge. Since much of the time it is warm here, the sauna doesn’t get a lot of use. Today was the first time I used it since moving in May (we’ve mostly used it as a place to store unpacked boxes!).

The last couple of weeks have seen cooler overnight temperatures (such that I switch from the quilt to the feather duvet) and somewhat cooler daytime temperatures. It still gets warm most days, but some days it is actually comfortable to be walking around mid-day with long pants / jeans. With the cooler temperatures, I’m not worried about the sauna heating up the apartment.

The infra-red sauna doesn’t actually get that hot (its default setting is 50 deg C). It is powered through a regular outlet, and uses about the same power at the electric kettle (we tested this back in Ottawa) – however, unlike the kettle, it runs for much longer (usually 90 minutes or so – 20 minutes to warm up then I’m in it for usually 45-60 minutes). Because it doesn’t get as hot, it doesn’t dry out your eyes. It also means that I can use my iPad inside the sauna – so I watch TV while sweating away all those toxins in my system. It works by heating you up from the inside – causing you to sweat a lot (you need to drink a lot both before and after sauna’ing).

Today I finally hopped in the sauna. At first I didn’t think it was doing much. It took longer than normal to start sweating. In part I think because my body has forgotten the stimulus – after a couple of regular sessions my body will remember the stimulus and start sweating faster. When I got out of the sauna, I had an immediate sense of peace and calm. It is the same endorphin rush I get from sweating while exercising … however, with the low blood counts, neuropathy, and visual cognition issues I haven’t been able to do exercise that causes me to sweat. I have really been missing it. So, today I am thankful that we didn’t sell the sauna, and that it was there for me. I shall be using it more frequently in the next few weeks as I recover from chemo and prepare for surgery.

I’ve managed to completely lose track of what day it is. I felt that Tuesday was the weekend, and then yesterday (Tuesday) I took my meds labelled Wednesday. The change in chemo day certain is part of my confusion – because my routines are all changed but still. I shouldn’t have to check my phone multiple times of day to see what day it is!

I had planned on writing another academic blog post today (for my other blog), but those plans got derailed when I checked Facebook this morning – the first message I read was a friend praying that everyone in Ottawa was safe. Oh my! I ended up checking in throughout the day, watching as news unfolded – an attack on parliament in Canada. I used to live about two blocks from parliament. I saw updates from various friends who were in lock-down. Glad I wasn’t there today and glad that my friends are all safe.

It’s the day before my next Taxol infusion and I should be feeling strong, but I’m not. I did go out for a float in the pool and a soak in the hot tub. I alternated between hot and cold, hoping that it might bring back some sensation to my numb skin. I’m experiencing nerve pain which makes me feel weak (weak as in not strong). The pain itself isn’t bad, but distracting, and it makes it difficult for me to focus, it also saps me of energy. My feet an numb as is much of my skin (feels rather odd really). Glad that I have only two more weeks of this, then my body will be allowed to begin mending itself.