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.
Today I was a chemo tourist. The infusion center I normally go to was full, so they booked me at the new Stanford infusion center in Redwood City. Boy is it swanky. Everything is so shiny and new. It totally does not feel at all the same as the Stanford Cancer Centre ITA.
I thought I had taken a picture looking out from the chair, but it appears I didn’t. The ITA is setup with two infusion chairs in each “family area”. There is a table with games and magazine. Instead of individual TVs there is one large TV. There were lots of chairs for family members to sit, and each infusion chair had its own table (for laptops or lunch or whatever). You certainly don’t see as many sick people at the Redwood City ITA – in part because the treatment areas are much smaller and more segregated (separated into two people per treatment area). It is a very different feeling. It certainly felt more upscale than the regular ITA.
If I had a bunch more chemo to go, I’d certain try to get more of them scheduled at the Redwood City ITA (they ran on time!). With only one left, I’m doing my last chemo at the regular ITA because it is my time to say thank-you to all the nurses there. Interestedly, the nurse I had today was one I had a couple weeks ago at the other ITA (she was there on loan for the day). So it was nice to see a familiar face in the new surroundings.
To brighten my mood the chemo nurse mentioned that my dosage had been reduced – actually she mentioned it, not knowing how much it would brighten my mood. I’m hoping that the lower dose will mean a reduction in the side effects (crossing fingers). It really does make the whole idea of two more weeks of this (one more chemo, but it takes a week to recover) more bearable. It most definitely cheered me up. Maybe I’ll not feel so bad this coming week 🙂
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.
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.
I had three days off of chemo (rather than 7 days between infusions, I had 10 days). In those three extra days, some of the persistent side effects of Taxol began to wear off. I had more energy, less pain, and my mind was more focused. It was easier for me to get out and exercise, and easier to spend time on the computer on tasks that required concentration.
What has surprised me is just how quickly I forgot about the pains of Taxol. I had forgotten about the shooting nerve pain, the weak and achy joints, the numbness in my feet, and pain in my finger tips. I had forgotten until yesterday anyways!
We went for a morning hike up on the Sierra open space reserve (about a 30-minute drive from our place). Scott brought his new camera and took some fantastic photos (http://dttocs.smugmug.com/Sierra-Vista):
I enjoyed walking but definitely felt a lot weaker that I had been last weekend doing the Peak Hike (can’t believe that was only last weekend). Late yesterday afternoon the nerves started to fire off again (I didn’t realize they had stopped until they returned). It was at this point that it occurred to me that the change in infusion days from Monday to Thursday means that my weak days are Saturday and Sunday rather than Thursday and Friday. It means I need to tone down my weekend commitments until this chemo is done (two more weeks!).
The good news in all this, is that it only took me three days to forget about the worst of the Taxol side effects (yay).
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 got out for a bike ride this afternoon, 21km on the trike. What was really interesting is when my iPod started playing Bon Jovi’s “It’s my life”. This song has had special meaning for me, ever since karaoke in the crew lounge in the middle of the Atlantic on a container ship. I almost always listened to it when I ride, and over the years it has always provided me with a moment of reflection – and usually a smile at the reality that my life is pretty darn good. The song has always caused a reflection in the moment, causing me to count my blessings, it has always been a celebration of happiness. At least until cancer hit … ever since my diagnosis I haven’t had any reaction to the song. My reaction has been more of indifference. At least until today.
For the first time since my diagnosis, I had that same happiness reaction to the song. Perhaps it was the extra three days off chemo, I’m not sure. For the first time since my cancer journey began, I have been able to see beyond cancer. Until now, I had been seeing all the doors that had been closing, but suddenly today, I’m seeing the doors that are opening. I’m signing up for crazy things that my cancer diagnosis is allowing me to sign up for like Cameras Over Cancer. I’m feeling good about my surgery decision and looking forward to ‘the new me’ after surgery. There indeed are some benefits to having a plastic surgeon sculpt your excess body fat into something more cosmetically appealing. I’m curious to see what my ‘new normal’ body weight will be. I’m free of worrying about my body weight and BMI now, knowing that my weight will necessarily change as a result of the surgery.
I’ve also found that cancer has introduced me to many incredible people – people that I otherwise may never have crossed paths with. I had not realized how much of a local support group I actually had until I found myself in need of a ride to my next chemo session as Scott is away on business next week (chemo side effects mean I cannot drive myself right now). I was amazed at just how many people offered help when I asked. One blessing that cancer has brought me are all the wonderful people that I now know, for that, I am thankful.
