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Although paclitaxol chemo is proving to be more of a challenge than I expected, we did manage to get up to Yosemite this weekend for our anniversary. We spent two nights at the Wawona Inn, and managed to get out hiking on both Friday and Saturday – before the rain started. It rained quite heavily at times all night Saturday. When we left Sunday morning, the road report showed that Tioga pass was closed due to snow!

On Friday we tackled Mariposa Grove – the oldest and largest grove of sequoias in Yosemite. After 45 minutes hiking, I suggested we turn around at the 1 hour mark. After reading a few signs incorrectly, we didn’t turn around but soldiered on and made it to the museum at the top of the grove (we climbed 313m, hiked for 2.5 hours, 7.5km, 12,000 steps).

Feeling a little sore on Saturday morning, we opted for a shorter hike up Sentinel Dome (168m, 4.2km, 1h 50m, 7000 steps). The views were spectacular, and we arrived back at the car before any hint of rain.

Overall, a great trip to Yosemite. We are glad we didn’t let the weather forecast stop us!

In theory, the body forgets pain. You remember you were in pain, but you forget what that pain felt like – in theory.

On Wednesday I developed some mouth sores. They haven’t been bad, but they have had me on edge.

Daily, I experience nerve pain – sharp pains that come on suddenly and then fade. They aren’t actually that painful (at least right now) – more like someone unexpectedly poking you with a needle. They are annoying. Again, they put me on edge.

While hiking on Saturday I realized why these pains were putting me on edge – it is because I haven’t forgotten how bad they can get. I remember quite well the pain of mouth sores the last week of AC – when I couldn’t talk and was limited to eating soft bland (ph neutral) foods. I remember quite well the pain of the first cycle of Paclitaxol when the shooting pains kept me up all night (before I had painkillers and knew how to manage it). I realized that the small hits of pain were reminding me of the larger pain – and it was the memory of pain that was making me on edge.

Now that I realize what was happening, I’m OK. I can re-evaluate where the pain is now – and move beyond the memory of previous pain – but I had to realize that it wasn’t the current pain that had me on edge, rather it was the memory of previous pain, which is now gone. Hopefully the memories too will fade!

Today I was pretty grumpy by the time we made it into infusion. I ended up waiting an hour after my appointment time before I got a chair – they were out of chairs and beds, so I had to wait until one cleared. Then when I got one, it was in the corner – it feels like I’m tucked away. The person beside me had the curtain drawn so I felt like I was in a little cave. I was already grumpy, so waiting an extra hour and getting a crappy spot didn’t make me happy.

Then the order in the system was wrong. It showed the amount of steroid I was on for cycles one and two (20mg) instead of the change we made last cycle (8mg). As I write we are still waiting confirmation, but we did manage to get the nurse to let me take 8mg while we wait for the call from my oncologist (the nurse checked with my oncologists nurse practitioner). Because I take the steroid by pill, I need to wait 30 minutes after taking the steroid before chemo – so waiting for the call back and then having to wait another 30 minutes was really trying my patience.

Honestly, I’m just getting tired of the chemo routine. The last few weeks I’ve had more bad days than good days. I keep hoping for a rebound, but it isn’t coming as quickly as I’d like. After today I will be 1/3 of the way through taxol. Can’t wait for this to be done!

Fortunately the nurses are so friendly that after a few minutes, I started to feel a little less grumpy – to that is good. I don’t like grumpy Becky!

We had some time between the blood draw and the infusion appointment, so we walked over to my tree for photos and sat down and enjoyed a brief picnic lunch.

… but I’m pretty certain now … my oncologist warned that it might happen, and that I should not worry … it has no relation to the effectiveness of the chemo …

… the hair on my head has started to grow back! It is still pretty thin – where I had mostly shiny head before, I’m starting to show a 5 o’clock shadow. It will likely be several months before I have “hair”, but I can definitely feel the difference in the stubbliness of my scalp.

This is the second time that I’ve heard this – having nipples makes a huge difference to self confidence (thanks Stacey for the honest and open blog post).

There is a company that makes temporary rub-on nipple tattoos for women post-mastectomy. You can even buy them in variety packs, to help you decide which colour you prefer. This allows women to try various shades prior to having permanent tattoos. What I find interesting is how this is such a contrast to the Look Good Feel Better workshop. Here the nipple tattoos are applied under the clothing. They aren’t meant to be seen by the general public. I’ve heard women comment that having them makes them feel whole again. When they look down, suddenly things look right again. They find comfort in that.

I have no idea what I’m going to do about my nipples (but part of the reason for this blog post is so I don’t loose the link to the temporary tattoos!). I don’t know if I’ll actually get a choice in the matter – the cancer may mean that they cannot be saved. I don’t know. I also find myself debating whether I want to save them (I hate wearing bras at the best of times) – but then I read posts like Stacey’s and I hear from other survivors – and I think, perhaps having my own nipples will help me recover? It might make the recovery process easier (from a mental perspective rather than a physical one). I don’t know.

Sometimes what you don’t see on the outside makes a very big difference on the inside …

After chemo on Monday I attended the Look Good Feel Better workshop – this is a free two hour workshop for women with cancer. The focus of the workshop is make-up. Immediately after the workshop, I didn’t feel better, rather I felt guilty. Why did I bother?

Had I not be lured into the workshop by people saying it was excellent, I likely would not have chosen to attend. I had been warned, but the warning was from back in Canada, where surely, it was different. Unfortunately, I don’t think it was that different (or perhaps not different at all). If you are someone like likes to put on make-up in the morning, and who wants to learn how some tricks of the trade by professional estheticians, then you may very well enjoy the workshop. But don’t expect the facilitator to know anything about cancer – and don’t expect them to know what make-up is good for you – and don’t even expect that the make-up kit you receive will contain make-up you can use after the workshop. They categorize the make-up into three colour schemes (light, medium, dark). Given that I was a medium, the medium range is pretty wide! You don’t know what colors or even what types of make-up are in the kit until after you open it – at which time it cannot be re-used.

My behavior made me experiencing cognitive dissonance. In one breath, I am asking you to help sponsor my fundraising walk that raises awareness about the chemicals in our life that increase risk of breast cancer, in the next breath I’m attending a cosmetic workshop where some of these chemicals are used to produce beauty products that I do not need and will not use.

So, in short, if you are someone who wears make-up and wants to spend a couple of hours getting some tips from professional estheticians, then you will likely enjoy the workshop. If you are someone like me, who never wears make-up (I wear the occasional lipstick), then don’t bother. It is both a waste of your time, but is also an environmental waste – as all the free make-up you are given will need to be tossed out once you open it. Here is a selfie of me with make-up … it didn’t last long as the foundation irritated my skin, so I washed it off shortly after the workshop!

First I want to say ‘thanks for the hugs’. I received several emails and virtual hugs after my post yesterday. I really appreciate the support – and often when I get into one of my down moods, I just need a little encouragement.

I know that I tend to ‘catastrophize’  – that is, to imagine the worst possible scenario. I am especially prone to this type of thinking when I’m not feeling physically well. Pain or weakness make me more prone to catastrophising.

The first step to stopping is in part to recognize that it is happening. It wasn’t long after I posted “I’m scared” that I realized that I was ‘catastrophising’. My brain was stuck in a loop of ‘worse-case’ and not moving beyond that. Once I realized it was happening, I can then change my thinking. The reality is that although I’m feeling neuropathy and pain, it isn’t that bad. I have ways to manage it. The worst of it is limited to about 12-72 hours (depends on the cycle), and for the most part, things clear up before the next cycle. I’m not at a point where stopping Taxol is a real consideration – not yet anyways – and we’ll cross that bridge when we come to it.

I’ve now processed the things that I was worrying about. We can deal with the wrenches in the path when/if we need to…

It is important for me to write about my feelings when they are happening – even when they aren’t happy comfortable feelings. If I don’t write about my down days, I’m not being honest to the journey – but also, others who read my blog need to hear that down days are a normal part of this process too.

Today I’m doing better. Thanks for the hugs.

I have given myself permission to go into surgery kicking and screaming. I’m OK with not being calm and collected when I get rolled into surgery. It is natural to not want to deal with it.

But, what has got me scared today? I went for a bike ride and the exercise seem to make the neuropathy worse! Unfortunately, my 18km ride today will likely be my last ride on my road bike until after Taxol – unless something changes. In addition to making the neuropathy worse, my sense of disorientation is not ideal when riding that bike. I’m further off the ground than on my ‘bent and I feel like things move too fast. The bike itself is less stable – so more risk of falling. I shall miss it, but alas, it may be time to start looking into indoor exercise options!

On Monday, when my oncologist mentioned that if the neuropathy gets too bad, we stop the chemo and move up the surgery date – that scared me. I have things planned – I have plane tickets booked. I don’t want to have to change my plans … I want to continue to feel like I am in control of this process … so today I’m scared. Scared that my well laid plans will all need to be tossed to the side as I deal with this disease … ugh

[Update: Several people recommend the following website for a list of Environmentally friendly / chemical friendly sunscreens: http://www.ewg.org/2014sunscreen/best-sunscreens/best-beach-sport-sunscreens/]

So, I have a question. The folks as Breast Cancer Fund have indicated that some of the chemicals used in sunscreens are endocrine disruptors and are therefore bad.

The article on harmful chemicals is here: Sunscreens (UV Filters). The bad chemicals are listed as:

“3-(4-methylbenzylidene)-camphor (4-MBC), octyl-methoxycinnamate (OMC), octyl-dimethyl-PABA (OD-PABA), bexophenome-3 (Bp-3) and homosalate (HMS) (Krause, 2012; Schlumpf, 2001).”

I primarily use:

1. Coppertone Sport (cream), active ingredients are: Avobenzone, Homosalate, Octisalate, and octocrylene.
2. Coppertone Sport (spray), active ingredients are: Avobenzone, Homosalate, Octisalate, and Oxybenzone
3. Aveeno daily moisturizer, active ingredients are: Avobenzone, Octinoxate, and Octisalate

OK, so looking at this, it looks like Coppertone Sport would not be recommended (sad face) – so now I need a recommendation for a good waterproof / sweatproof sunscreen that doesn’t contain any bad chemicals. Any thoughts? (the print on the bottles is so small that it is really difficult for me to read!). I notice that some of the Aveeno products also use Homosalate, specifically I have a bottle of Broad Spectrum SFP 50 for Face that contains Homosalate.

So, for those of you reading this, can you do me a favour and check the ingredients on the sunscreen you use … and let me know if you find one that is sweatproof / waterproof and doesn’t contain any of the bad chemicals listed above. Thanks.

When I don’t blog, please don’t worry. Take a look at rjh.goingeast.ca to see if I’m blogging over there (I have been writing about patient engagement more generically on my academic blog). I am touched that so many people are reading my blog – and that they worry when I don’t write.

Writing everyday is work. It takes time, but it also takes inspiration. I try to remind myself that I will want a record of how I’m feeling – and that I should write it down. But I don’t always have the words. I sometimes feel like I just don’t have anything interesting to say. On those days, I don’t blog. Do you really want to know that I spent the day resting and watching TV? Perhaps. Perhaps I should throw out a quick message that says “I’m OK, just taking a day off” … I will need to think about that …

With the T-chemo (Taxol), I’m now on a weekly schedule. There are a bunch of side-effects, some of which get better as my body gets used to the new regime, others which are cumulative. I don’t yet know which will be which. So far, the worst of the side-effects (face & eye redness, nerves firing off, joint pain) seem to be of the type that gets less severe as my body gets accustomed to the new regime. So far, this cycle has been much better than last – I am feeling my strength coming back.

I do, however, note that I’m really productive on the first couple of days of the cycle – Monday, Tuesday, and part of Wednesday (both academically productive and errand running productive). Thursday and Friday are usually the days I mostly want to sleep and watch TV. I feel fatigued, and I’m not motivate to get out. That being said, Thursday is also the day I am trying to get out for a regular walk with my friends – so the distraction that is caused by a visit with friends makes the day go a lot better – however, it means I’m not likely to blog that day. The limited energy that I have is spent walking and visiting with friends – there is nothing left for blogging.

So, if I’m not blogging, imagine me out walking with friends (next week, I’ll be walking on Thursday, sailing and camping on Friday – so likely won’t be blogging Thursday through Saturday – but I shall be well – enjoying the good company of friends and communing with nature).