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In the early days of Pink’tober a fellow blogger ranted about a restaurant who wanted to advertise on her blog. Her objection was that the restaurant was offering a drink special, and that alcohol was a risk factor for breast cancer – so how dare they advertise a drink discount in association with breast cancer.

This got me worried. Was I going to need to change my drinking habits? Did I have to give up wine? Now, I don’t drink a lot, but I do enjoy a glass of wine or two with dinner three or four times a week.

Eventually, I got around to looking up what the literature had to say about alcohol and breast cancer. The good news is, I don’t need to give up my wine drinking. Actually, a recent study in the Journal of Clinical Oncology goes so far as to say that I should continue (or increase) my alcohol consumption – because it has no effect on my survival associated with breast cancer, but alcohol consumption “is associated with a reduced risk of death from cardiovascular disease” (Newcomb et al, 2013, p.1944).

Now there are studies that do say that alcohol is associated with an increased risk of re-occurance – however, the risk is in a small subset of the population which might have additional co-mobidities that aren’t taken into account. One such study (which has issues such as defining alcohol use as all or nothing, rather than taking about levels of alcohol use – then concluding about moderate use of alcohol), uses nice vague language: “Our results point to a potential positive association between alcohol intake and risk of recurrence and breast cancer death, which appeared to be limited to overweight and obese, but not normal weight, women” ([highlighting added by me] Kwan et al, 2010, p. 4414). This same study had in the conclusion “Consuming three to four alcoholic drinks or more per week after a breast cancer diagnosis may increase risk of breast cancer recurrence, particularly among postmeopausal and overweight/obese women, yet the cardioprotective effects of alcohol on non-breaset cancer death were suggested” (Kwan et al, 2010, p.4410). Wow! That conclusion certainly does not follow from the evidence provided in the article. I’m really surprised it got through peer review! It is a good demonstration of why one should read beyond the abstract – as the contents may demonstrate that the conclusions don’t follow from the study!

Now there are other studies (Chen et al, 2011) that do show that alcohol consumption is a risk factor, but the effect size is really low (1-3%).  When you read the study, terms like “but the p value for interaction was not significant” (p.1886) – meaning, you cannot conclude anything from the data as it was not statistically significant – keep popping up in the discussion. So, when you combine the small effect size with the lack of statistical significance, you get a study that doesn’t really say much.

And so, I’m not convinced that having wine with dinner increases ones risk of breast cancer. And I don’t believe that after diagnosis, having wine with dinner increases ones risk of recurrence. So, I shall happily enjoy that glass of wine, cause well, my heart appreciates it 🙂

References

Chen, W. Y., Rosner, B., Hankinson, S. E., Colditz, G. A., & Willett, W. C. (2011). Moderate alcohol consumption during adult life, drinking patterns, and breast cancer risk. Jama, 306(17), 1884-1890. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292347/

Kwan, M. L., Kushi, L. H., Weltzien, E., Tam, E. K., Castillo, A., Sweeney, C., & Caan, B. J. (2010). Alcohol Consumption and Breast Cancer Recurrence and Survival Among Women With Early-Stage Breast Cancer: The Life After Cancer Epidemiology Study. Journal of Clinical Oncology, 28(29), 4410-4416. doi:10.1200/JCO.2010.29.2730

Newcomb, P. A., Kampman, E., Trentham-Dietz, A., Egan, K. M., Titus, L. J., Baron, J. A., . . . Willett, W. C. (2013). Alcohol consumption before and after breast cancer diagnosis: associations with survival from breast cancer, cardiovascular disease, and other causes. J Clin Oncol, 31(16), 1939-1946. doi:10.1200/JCO.2012.46.5765

My oncologist has a new nurse, and boy to I miss the previous nurse. You see, the new nurse doesn’t answer my emails in a timely fashion (they aren’t really emails, they are electronic messages through the secure myHealth system). The original nurse checked at least twice a day, such that I often had a reply within hours of sending the message. We had an understanding. I emailed my concerns and she replied the same day. There was no need to call. I only ever needed to call if the issue was urgent (e.g. I needed pain meds the same day). But now, with the new nurse, I feel like my messages are going to a void. I report a new side effect or problem, and I wait. After at least 24-hours I get a response. I can no longer expect a reply the same day (sometimes it takes 2 days – which is an eternity when you are waiting on pain meds or trying to be proactive about treating a side effect).

Today it occurred to me that I had developed a (very mild) form of learned helplessness. I had learned that reporting was not making a difference, so I stopped reporting. My behaviour as an engaged patient changed because of a behaviour change in my healthcare team.

What is important in this observation, is that when healthcare providers want patients to ‘comply’, the providers need to do their part in acknowledging that compliance. If you want me to report my side effects, you need to acknowledge them when I do report. Otherwise, I feel like I’m wasting my time and energy reporting.

Another important note here is that you don’t necessarily need to solve the problem. As a patient, when I’m having a chemo side effect, I sometimes just need a little re-assurance. I need to know that what I’m feeling is OK. It happens. It isn’t a serious complication. I just need an acknowledgement. I want you to note the side effect in my file, so that when we are discussing my care at the next appointment, you have a better picture of my experience – I am doing my part to help ensure that you have information about my experience, to help you recommend care that aligns better with my needs. It is a partnership – but that partnership only works if you acknowledge my attempts to communicate with you.

An acquaintance with metastatic disease is having a personal fundraiser and in her invitation she talked about ‘reclaiming pink’. This reminded me very much about the work we do as Unitarian Universalists of reclaiming religious language – a message that resonated very strongly with me and allows me to call my local congregation a “church” even when I don’t identify as a Christian. It also reminds me of how the GLBT movement has done a lot of work to reclaim words. My point being, there is power in taking back language and symbols that have been co-opted by others for not so altruistic purposes. I like pink. I often wear pink. I don’t feel a visceral need to avoid pink. But now that I have breast cancer, pink is a loaded colour. It has a message in it, and in that message is power.

I’ve blogged recently about pink’tober and about what breast cancer awareness really is about. So, what do I want to do for breast cancer awareness? First and for most, I blog about my experience with breast cancer. That is what I can do for awareness. But also, I want to re-claim pink. I want to get a t-shirt (or nice long sleeve exercise/sunshirt) that is pink and says something like: Ask me about breast cancer … maybe with a pink ribbon and my blog address.

Because awareness is about talking about it … and Ask me about breast cancer is an invitation to talk to me about it. Of course, I’d only wear it when I wanted to talk about, when I was willing to have conversations with strangers about it (which is pretty much most of the time) … it would allow me to reclaim pink to support the message I want to support.

Now I just need to figure out how one gets the custom shirts I want made … and maybe find a graphic artist willing to do up a design pro-bono for me …

Yesterday (Thursday), I had my 7th infusion of Palitaxel (Taxol). When I wrote about my chemo plan in my temper tantrum post, I was off by one dose – so I shall end taxol at 9 doses. So Thursday was my Star Trek Voyager treatment (7 of 9) …

I now have my last two Taxol treatments scheduled (Thursdays). Next week I’ll be going out to the Redwood City infusion center because they couldn’t get me in at the regular place. It will be neat to see what the newer facility is like. I opted to have my last session (Oct 30) at the normal infusion center because I need to hear the chemo song and say farewell to all the wonder chemo nurses there. After 13 treatments (4 AC, 9 Taxol), I will have spent a lot of time at the ITA (infusion treatment area).

I have confirmation on my two surgery dates (surgeries describe in this post). The first surgery will be on November 19. One nice thing about this schedule is that we were able to rebook our Hawaii trip from December 3-11 to November 10-17. When we first talked about ending chemo early and doing surgery sooner, one of the things I was bummed out about was missing the Hawaii trip. I’m happy that we managed to work it all out, and our friends Nicky and Judy from the east coast will be joining us. I’m so looking forward to that trip.

I have also received clearance for traveling the week after surgery. So the originally scheduled trip to Niagara to visit my parents is back on for American Thanksgiving (Nov 26-30). I’ll have a checkup with the surgeon on Monday November 24 to ensure that I’m OK to fly – the expectation from the surgeon’s office is that it won’t be a problem and they suggested that I need not change flight plans at this time.

The second surgery (the long 8-10 hour surgery) will take place on December 17.

I have a lot of appointments scheduled – various ones to talk about the details of the surgeries and the details of the pathologies. I’ll end off the year, December 29th with appointments with surgery (to hopefully remove drains) and oncology to go over full pathology reports and make plans for next steps (likely anti-hormone therapy for 10-years) – it is at this point where I hope to get the message that I’m free of breast cancer (NED – no evidence of disease). That would be a very nice way to enter the new year.

I watched this pretty cool TED talk this morning. Boy wouldn’t it be nice if detecting breast cancer was as easy as a blood test that could be done as part of your annual physical. I do wonder if it would still detect it sooner than self-exams in young women – in that, I had a physical in January with no signs of disease, but had disease in June. So, would a test like the one in the video have caught the cancer a little sooner or would it just have confirmed that I had no disease in January, but I had disease in June?

I wonder how it might be used in the future for those of us with breast cancer, to confirm NED (no evidence of disease) after treatment? Would that simple test mean that more people choose lumpectomies? Currently, if you have lumpectomy, you are considered high risk for re-occurrence, which means that you subjected to more frequent screening (more frequent mammograms and breast MRIs). If future screening was a simple blood test, would that change the decision as to which surgery to have?

I like that the company creating it is allowing the platform to be open source, so that others can work with it and improve upon it. It also helps to make sure that the platform is affordable.

I think for me, the biggest thing such a test would provide is peace of mind. The ability to have a blood test ever 3-month for the first five years after treatment (when re-occurrence is at its highest) would go a long way to providing peace of mind.

Until I was diagnosed with breast cancer, I was not aware of it! October came and went with lots of pink ribbons, pink running shoes, TV commercials about various breast cancer charities, dumb games on Facebook, and requests for donations to some unknown charity with breast cancer in the title at the grocery store. None of these made me any more ‘aware’ of breast cancer. Frankly, I was pretty happy being un-aware of breast cancer. So, I’m not sure I really want people to be aware of it.

Now, when I was diagnosed with breast cancer, I suddenly had to become aware. I had learn what the diagnosis meant, what the different pathologies were for breast cancer, what the common treatments were, and how all this might apply to my particular form of breast cancer. I had to learn a whole new language.

Now, if you are a regular reader of my blog or the blogs of many other amazing women who are living with breast cancer (e.g. Booby and the Beast, Nancy’s Point, Stupid Dumb Breast Cancer), then you are probably pretty aware of what it means to have breast cancer. I think blogs are probably one of the best educational tools to provide ‘awareness’ of what breast cancer is all about. If you want a true dose of awareness, take a read of Jen’s post “Around the Web – Mets Edition” – many of the stats around metastatic disease and young women with breast cancer are quite sobering.

Breast cancer awareness campaigns do bring in a lot of money for research, but they also cause a lot of well intentioned people to waste their money by donating to questionable causes that don’t further research or help support those with breast cancer. And sometimes they are just PR stunts and do nothing to support breast cancer research or those living with breast cancer. If your going to donate money to support breast cancer research or breast cancer treatment, I recommend that rather than adding a dollar to your grocery bill or buying a pink product, you make a targeted donation to a charity that makes a difference in a way that matters to you. If you care about research into metastatic disease, then donate to metavivor.org, if you care about prevention, donate to the breastcancerfund.org, if you want to support women who have cancer in the local community look to local organizations like Bay Area Cancer Connections – or if you want to support me while supporting breast cancer, you can donate to my Avon Walk.

Yesterday, Scott and I got up early, drove for an hour and half and participated in the Peak Hike for Prevention (a fundraiser for the Breast Cancer Fund). I honestly wasn’t sure I was going to be  able to do it.

I was definitely slow, but I made it (12.21km and 3h47min, 20,000 steps, and elevation change of 479m). The hike took place at Mount Tamalplais, north of San Francisco. A tiny corner of the hike (near the top) crossed into the Muir Woods National Monument. We were lucky that it was foggy for most of the time we were climbing up, and the sun snuck out while we were at the top.

We hiked with a group that I met through one of my friends from support group. The group, Em the Gem, has been doing the peak hike since it started 19 years ago. They walk in memory of Emily (the sister of the team captain, who passed away just before the first hike). When they had t-shirts made the first year, the printer misspelled “honor” as “honer”, and ever since, the team has also been known as “The Honer Family”.

I find that I enjoy events like this because they push me to go beyond what I would have done on my own. Walking with Scott, we might have walked for a couple of hours, but I likely would have turned around after about an hour. Here I was encouraged to keep walking. I was slow, but I wasn’t the slowest. I was encouraged by the tenacity of others who were clearly pushing beyond their comfort zones.

As I plodded along, I did stop now and then and take in the scenery. It was a beautiful day for a hike. We’ll see, maybe next year I’ll do the 11-mile hike.

In one moment, I feel like I’m thinking clearly. I’m reading and reflecting. I feel connected.

In the next moment, I realize just how unconnected my mind is. This chemo brain is infuriating! I ventured out today – unable to drive because of the cognitive dissonance that is getting worse with each dose of taxel – I took the VTA (train) to the mall to buy a ridiculous amount of chocolate. I treated myself to a 30-minute reflexology foot massage (hoping that it might help with the neuropathy). What I failed to do was turn off the stove when I made breakfast this morning (I’m perfecting the poach egg – just need to learn to turn the stove off after taking the egg out of the pot). Fortunately, I didn’t do much more than burn the bottom of a pot.

I have several blogs posts in the works. In the times when I’m thinking clearly, I reflect and I write. I seem to be OK when I’m sitting in front of my computer – with that limited field of vision. But when I step outside to walk, visual processing is a challenge. I find myself looking down at the ground as I walk, mostly because I cannot process what I’m seeing when I look up. It is confusing. My vision is also getting worse. It doesn’t help that my vision was all screwed up from the cataract surgeries even before the cancer – but the chemo is changing my vision, so my glasses aren’t as clear – and my eyes without my glasses aren’t working well. The mono-vision idea made sense when my brain was working well – it is a challenge when my brain isn’t functioning properly.

So looking forward to being done with chemo!

As many of you know, I’m an avid cyclist. Cycling has been one of the things that kept me sane though AC chemo. It is also one of the things I’ve struggled with on Taxol. One of the unfortunately side effects of Taxol is cognitive disassociation – where my brain cannot process visual queues as fast as it normally does. This has meant that I’ve had to stop driving. Until last cycle I was able to drive a couple of days a week. Now I’m not comfortable driving at all. In addition to not driving, I’ve also been challenged with biking. The biggest concern is that my balance isn’t what it used to be. So in addition to not processing the visual cues, I’m also not as solidly balanced on my bike. So – regretfully, I’ve come to a point where I could no longer ride any of my bikes.

Fortunately, there is the internet … and I’m connected to various communities. I posted a plea on a Facebook recumbent riders group but also on the forums at BentRiderOnline.com. One of the folks at ‘bent rider online came to my rescue (thanks Dave!). This afternoon, Dave dropped off his Trident Tadpole Trike for me to borrow while I’m on chemo and recovering from surgery (when I cannot put any weight on my arms). Tonight I got a chance to take it out for spin! It was a hoot to ride – I’m so happy to be back on a bike again. Unfortunately, the front wheels are slightly too far apart, such that it doesn’t easily fit through the front door. This means that I can only ride when Scott is home to bring the bike in and out for me (I’m not currently strong enough to lift it, although that will change once I stop chemo and regain some of my strength). For now, I’m just happy to be able to get out and ride a few days a week (whenever I can convince Scott to come home early enough from work to sneak in a ride before dark!).

Surgeons get a bad rap for being insensitive and un-empathetic. From the outside, they are seen as the engineers of medicine – socially awkward, mechanical in their interactions, and having no time for patient engagement.

This has totally NOT been my experience. I’ve see a couple of breast surgeons, a couple for breast surgeon fellows, a plastics resident, and a plastic surgeon. In my experience, the surgeons have been highly empathetic and have spent a large amount of time educating me on my surgical options.

What has been interesting is that this seems to be part of the learning process. Those who are most empathetic are the attending surgeons. The residents are still learning, so their interactions can feel a little mechanical – they are still trying to figure out the best ways to make connections with patients, but also the best ways to describe things. By the time they are fellows, you see a higher level of confidence in their ability to provide patient education – and you start to see more customization to your specific case. The surgeons themselves seem to be the best at tailoring their discussions to your specific situation.

One of the best bits of early advice I received was to ‘decide who you wish to trust’ in your treatment. In the first couple weeks after diagnosis, I had decide where I was going to get treatment. I based this, in part, on where I felt comfortable – but also who provided me with the most options. I really liked being in a teaching setting, and having access to more specialists – but that was balanced with knowing that I would spend more time in waiting rooms and receive less fancy care (e.g. the infusion treatment center doesn’t provide lunch).

After a couple of appointments with my breast surgeon, I decide she is someone I wish to trust. After my first visit with my plastic surgeon (she spent over an hour talking to us), I decide she was someone that I trust. Having made the decision to trust them, allows me to filter through all the additional information and advice that I receive. It allows me to be OK with the decisions I’m making, and allows me to be confident and a lot more comfortable with the idea of my upcoming surgery.

I just felt it necessary to say, that society gives surgeons a bad wrap – at least from my experience – the breast oncology and breast plastic surgeons have been pretty awesome so far!