Tag: mental health

Breast cancer prevention

Sun September 14, 2014

It is with mixed feelings that I read about breast cancer prevention. It is not that I want anyone to get breast cancer, I would not wish that on anyone. It is just that when I read about prevention, I enter that world of regret. I start running through the if onlys…

…if only I had thrown out the water bottles with BPA sooner
…if only I ate less red meat
…if only I ate less sugar

In general, I’m very good at not regretting the past. There is nothing I can do about it now, so no point in dwelling on it right?

But still, when I hear of a charity that focuses on breast cancer prevention, I’m filled with both regret and doubt (can we really prevent breast cancer?).

One charity that works to help prevent breast cancer by providing public advocacy and education campaigns based upon scientific evidence (not personal opinion – there are way too many personal anecdotes about what causes cancer!) is the Breast Cancer Fund.

On October 11 (Canadian Thanksgiving Weekend), Scott and I will be doing a day hike that is a fundraiser for the Breast Cancer Fund. It is a good chance for us to meet some new people (we’ve joined a team captained by a friend-of-a-friend) while going on a hike up Mount Tam in Marin County (just north of San Francisco). It is an area that we haven’t yet explored, so that too should be fun. Mostly, it is a great excuse to get out, and help me get motivated to train for my walk down Mount Haleakalā in December. As this is a fundraiser walk, we could use a little help with fundraising …

To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd

To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue
Persistence, Tenacity, and New Blood

Wed August 20, 2014

This cancer journey reminds me of some aspects of our Going East bike trip – particularly during those times when persistence and tenacity are what you need to make it over that one last hill. I always thought this picture from our trip made a great motivational photo (Scott pushes the loaded recumbent bike up the mountain – you can see the sweat on his back – unfortunately the picture does not do the steepness of the hill justice). The locals thought we were crazy trying to bike over this mountain pass – but we were both persistent and tenacious and we made it!

Perhaps this is a better persistence picture (also in northern Thailand):

My point here, is this is how I feel when I’m feeling fatigued. I feel like the entire road is uphill. And although these pictures show a struggle, they also bring a smile to my face. They remind me of challenges that I have overcome. They provide me with that little extra reminder, that yes, I can do this.

Yesterday, I had my first transfusion. The AC chemo was knocking out my red blood cells (RBC), and they were not being given enough of a chance to bounce back between rounds. Folks have asked about drugs to help with RBC. Apparently the drugs take a long time (6-8 weeks) to boost production, and the side effects can be worse than the side effects of a transfusion. Given the more immediate need for a boost now, it made sense. And so, I had my AC chemo on Monday and a transfusion of two units of RBC on Tuesday. I cannot say I immediately feel better – but then the AC chemo knocks me down for a few days, so it is hard to say. What I can say is that I have more colour – my cheeks are pinker and my lips have natural colour again. I had not really realized how pale I was before the transfusion.

Unfortunately, my phone doesn’t take very good photos.

We were also serenaded by the harp during treatment, which was nice. Apparently, med students who are also musicians volunteer to play in the cancer center. This is the first time we’ve seen the harpist directly in the infusion treatment area.

The volunteers at the hospital make the nice head scarfs/hats. I discovered that it works well when the tie is on the side – kinda makes me think I should learn to read tarot cards.

So, now I have some new blood. I am still feeling some fatigue, but hopefully in the next day or two I’ll bounce back :-).
Feeling strong

Sat August 16, 2014

I am surprised by how all of sudden my strength returns. Where only a week ago I could only swim 7 laps in the pool, I’m now swimming 30 and the only reason I stopped was because I had too many other errands to do.

It seems that with each AC cycle the down days after neulasta are longer, but when my strength does return, I’m stronger than I’ve been before. In cycle three, I walked farther (10km on day 2), cycled farther (36km on day 10), and swam farther (we actually I swam this distance in cycle 2 as well 1200m) – than I had before chemo started.

As I’ve discussed in my last post, I’m also struggling with increasing signs of depression – worsening with each cycle. This in part is related to not have access to my coping mechanisms (exercise) for the longer stretches each cycle. In part because the reality of having breast cancer is sinking in (denial is becoming less and less active in my brain), and a lack of knowing what will come next. Relating to exercise, each added day when I cannot get in a long workout, my stress and anxiety build. I’ll be working with the folks at onc-pysch on developing additional coping strategies, but will also be changing some medications to something new, where the side effects are actual effects that align well with counter-acting the effects of chemo (drowsiness, anti-neasea, and increase appetite). The new meds should also help deal with some of the ‘chemo-pause’ side effects (night hot flashes). We shall see how it all works – but for the next two or three days, I should be feeling strong – and will try to enjoy it while it lasts.

When I was up at Stanford yesterday, I visited my tree. I wish pictures could capture the scent of the eucalyptus.

I’m not nearly as good at taking pictures near myself near the tree – but here I am sporting the new cap Maha sent me from Egypt 🙂
Wondering why?

Wed August 13, 2014

In a post today Nancy asks “Do you ever wonder why you got cancer?”

I did ask my oncologist that question, in part because not only do I have cancer but I have bilateral cancer which is rather rare. So much so, that much of the literature and support materials on surgeries talk about having a single mastectomy, which makes it more challenging for me to predict how things will go for me.

I actually posted about exactly this question back before I started treatment in “Why me? versus It is what is.”

Now I think that something in me just clicked. From time to time I question, is it my poor diet from my 20s? or drinking out of Nalgene bottles before they were PBA free? or do I eat too much food cooked on the BBQ?, or something I was exposed to while travelling in Syria or Jordan?

But for me, the reality it that I will never know ‘why me’, and even if I did, it is in the past – it is nothing that I can change now. So I come up with my own answers. For me, the answer that I like it that something just click – some rogue something caused a bunch of cells in my body to go crazy. I kind of wish someone would take interest in the bilateral nature of my disease and try to answer “why” especially because of its uniqueness – but alas, it doesn’t actually appear to be that interesting from a research perspective. I don’t have anyone knocking at my door asking me to be part of a trial or experience to help figure out why. I’ve actually been excluded from clinical trials because I have bilateral disease.

So, it is what is it … why won’t change anything. There is no point in regretting the past (I have had a pretty awesome past full of amazing experiences, so nothing to regret really). I’ll just choose to move on with making decision about how I want to live the rest of my life 🙂
So I bit the head off of the repair guy

Fri August 8, 2014

It has been one of those kind of days. Actually, I managed to get some real work done this morning, so it hasn’t been a total write off. But I’m tired. Every little errand tires me out. My body aches and I’m nauseated. So when the repair guy called saying that he was at the front gate and wouldn’t come find my apartment, but rather required me to walk out to the front parking entrance to get him, I already was not impressed. Then mid-way through repairing the microwave he sniffles and coughs. OMG. I pretty much freaked out (internally). I texted Scott who suggested that I just ask him to leave.

You see, my immune system is compromised – not really badly – but enough that I was pretty clear when the repair guy came last week that no one was to come if they had a cold. I do not need that right now.

I did not kick him out, but when he started to ask about the co-pay, which my landlord needed to pay, I couldn’t process. My brain was not functioning. I snapped. I said, if you are sick I need to you to leave because I’m having chemo and cannot be exposed. He clearly felt bad and explained that it was just allergies because the people at the last call had a cat. But I still could not manage the mental processing of the co-pay issue. I called Scott on my cell and handed it to the guy. He was able to get the number for the property manager and deal with the co-pay issue. He politely went outside to deal with the issue and just knocked on the door to give me the receipt when it was all done.

I feel kind of bad for snapping – but I just couldn’t manage it. It is frustrating that I can handle some mental tasks really well, but others are beyond my abilities. I’m pretty sure I had the number for the property management folks someplace, but I did not have the capacity to figure out where that might be. I spent all morning working on getting my ethics submitted for my thesis project – so clearly I had some form of mental capacity – but this was just too much. Any capacity for multitasking it pretty much gone!

Ugh, chemo brain!
The transformative power of a bike ride

Thu July 31, 2014

One of the hardest things I’ve done lately, was to get out of bed after my afternoon nap, and get on my bike. It wasn’t that I didn’t have the energy for it – I did. I’m in a strong phase right now. It was that I was sad. And not the type of sad that happens when I have a needed breakdown, but the kind of sad that looks a lot like depression – and that scares me.

So, I dragged my ass out of bed and had a bowl of ice cream. I’m allowed comfort foods whenever I want them! And when you are sad, they help a little … plus I knew I would need the energy, cause if I was going to get off my ass and go for a bike ride I needed to ensure my body was fueled before I left.

So, I did it. I got changed and hopped on my road bike. For the first half hour of riding, I cried. My nose ran – most annoying side effect of chemo hair loss is that you lose the hair in your nose so your nose runs a lot sooner when you cry. I allowed myself to cry. I contemplated anti-depressant medication. I know that at some point I will probably need it, but I want to avoid it if I can. There are side effects to that as well.

About a half hour into my ride something changed – the endorphins kicked in – I suddenly started to see the beauty around me. I stopped to take this picture as the bird seem to be posing just for me.

The bike ride transformed me – from sad-Becky back into warrior-Becky. For the remainder of the ride I worked out the important arguments in a letter to the Editor for the New York Times relating to my recent blog post on bilateral mastectomies, that I plan to write (hopefully later this evening). Thank-you for those who have encouraged me to write something more formal.

I cannot say that I am no longer sad – I am just not dysfunctionally sad. I’ve moved past that part and can now start to pull my thoughts back together into actions. I hope to get out for another ride first thing tomorrow morning before it gets hot and sunny (since I cannot swim tomorrow due to low blood counts).
Every day a new side effect

Tue July 29, 2014

Chemo has many side effects, so many, that they don’t tell you about them. What happens is, when you have a symptom, you contact your oncologist (or the oncologist on call) to see whether or not it is something you should worry about. There are so many side effects, many of which are rare or not that common, that listing them all to every patient would be impossible. But, from the patient perspective, I find myself constantly running into these odd side effects. I’m happy to be part of several support networks (both face-to-face and virtual). The virtual networks in particular are useful for finding out whether something is “call the doctor immediately” or “pretty common, mention next time your are talking to your oncologist”. For the most part, my oncologist has not been concerned about the side effects I’ve experienced. It seems to be though, that ever day something new pops up.

Yesterday’s new side effect was loss of voice. Not a total loss, but I notice that suddenly my voice is horse and it is more difficult to speak. This of course posses and interesting challenge, as I also have blisters on my hands from toxic erythema of chemo, which I also experienced last cycle. When the blisters are at their worst, typing can be painful, so I use voice-to-text on my computer. The horse voice makes that a little more challenging. I actually don’t know for certain yet if this is a chemo side effect or if there is something else going on, but my social networks tell me it is not uncommon. I just haven’t yet had that confirmation from my oncologist.

I’m also loosing my hair. Now, this is something that was expected, and it was why I shaved my head in advance of cycle 2. However, when people say that hair loss usually occurs on days 3-4 of cycle 2, I expected it to be a single day event. That isn’t really what is happening. My hair is getting thinner on various parts of my body. From the front, you don’t really notice the hair loss on my head (which made me think it wasn’t happening), but from the back it is pretty clear. It is also interesting to compare mine to Scott’s, since we had them shaved at the same time. His is growing, mine clearly is not. It is actually the towels where I notice it most. I’ve taken to using two towels after a shower, one for my head and one for my body – otherwise, I end up with the little hairs from my head all over my body!

Once the hand sores finish up, I prepare myself for the mouth sores. I’m now at a stage where food is tasting funny and my mouth feels fuzzy, like a layer of skin is shedding in my mouth. Last cycle I had a sore on my tongue which was rather annoying and painful. Food was finally tasting good, but it hurt to eat (ugh). I’m hoping that by using the magic mouthwash in advance I manage to avoid the worse of the mouth sores this cycle.

Today was also my last swim until after my chemo nadir (blood count low). I have three days (8-10) where I cannot swim as my risk of infection is too high. I’ll miss swimming, especially if my hand sores aren’t healed as biking isn’t an option when I have blisters on my hands. This actually also coincides with fatigue, so last time on day 10 all I did was sleep all day.

All that being said, so far cycle two has not been as bad as cycle 1. I think because I have a better idea of what to expect, I can be more proactive about managing what is happening. I can also plan my weeks out better. I now know not to commit to things on specific days, but on other days I can be more flexible. That helps. The control freak in me is feeling more in control of what is happening.
Bilateral Mastectomies

Mon July 28, 2014

A friend sent me an email with a recent article in the New York Times about the prevalence of bilateral mastectomies entitled “The Wrong Approach to Breast Cancer“.

I read the article with much interest but also much distain. There are several issues that are not addressed in the article, but it also highlights some important trends and issues in breast cancer treatment. Let me start by sharing a couple of acronyms that will make this discussion easier – BMX stands for bilateral mastectomy, and PMX stands for prophylactic (i.e. preventative) mastectomy.

I also need to point out that the discussion is not about women with be BRCA1/BRCA2 breast cancer genes. Some useful statistics: 12% of women in the general population develop breast cancer, of these, up to 5-10% (yes hazy statistic there) MAY have an abnormal BRCA gene. For this small percentage of women, the likelihood of breast (80%+) and ovarian (25%+) cancers is huge. Prophylactic surgery for these women brings peace of mind.

The NYTimes article highlights that PMX is unnecessary as it does not improve survival rates. The article highlights the over-use of this choice. What the article doesn’t say is that one of the reasons so many women choose PMX is that they are sold on the ease of reconstruction. In the US, if a women has breast cancer, insurance is required to pay not only for treatments but also for reconstruction (I was told this at my very first surgical visit the DAY I was told I had cancer). A women from the UK commented that she was required to see a psychiatrist because she did not want reconstruction. The pressure to reconstruct is huge, but also, the way in which is it is sold is also misleading. The potential complications are understated.

The NYTimes article talks about statistics but does not take into account mental health. The far majority of breast cancers occur in only one breast (I’m an oddity). In many cases, women have the first breast removed, but then choose the PMX for the second breast. In some cases this is because of fear of cancer returning, as stated in the article, but in other cases it is because the women have difficulty living lopsided. The lack of symmetry becomes a constant nagging reminder of the cancer. It can be too much for some women. There are many women who are very happy about their choice of PMX and reconstruction, and many women who are happy about their choice for PMX and no reconstruction. What concerns me about this article is that it research stated like this gives insurance companies a reason to NOT do the surgery, when it may be in the best interest of the individual. Mental health and quality of live after surgery are two variables that are not considered.

I’m concerned for women who have PMX because they are sold on the ease of reconstruction, but I’m also concerned about potentially denying PMX for women whose quality of life will be significantly improved by it.

My personal case is different. I don’t qualify as a statistic in most studies because the nature of bilateral disease is not understood, but also because it is not very common. I have multi-focal cancers in my left breast (two tumors in different parts of the breast – the first is the one I felt (invasive ductal carcinoma, IDC grade 3 about 4cm), the second is DCIS (stage 0 non-invasive). In my right breast I have about a 2cm mass IDC grade 2 (it could not be felt and was found by a very good radiologist). So for some unknown reason my body suddenly started to grow breast cancer – and it did it quickly in multiple places. For me, the right choice is a BMX. It is not prophylactic, as I am not doing it to prevent a cancer from occurring. The cancer is already there.

I could have a lumpectomy to remove the three areas – but then I would need radiation treatments (I might still need them). I would need to have mammograms and maybe even breast MRIs every 6 months for the rest of my life. I would need to go through biopsies every time they found something suspicious, and any shadow would be considered suspicious because of my history. I would also be so very oddly deformed, with both breasts being different sizes and shapes. I would have a constant battle with body image. For me, this would lead to a terrible quality of life. I don’t want to live having to constantly worry about how I looked or when the next doctors appointment would be. It is bad enough to go through that during active treatment, I don’t want that to be my life after treatment.

I love the idea of being flat and having choices. What I hope for most is that my breast surgeon does a good job and I have nice clean scars. Then I can choose to wear foobs if I want an outfit to look a certain way, but I can also choose to not wear anything on a hot sunny day. I love the idea of a bra free life! To be honest, I rarely wear one now – but I’m finding that with all the insults to my breasts (biopsies and chemo) that I need to start wearing one more often, as they need to be supported.

What I really want to say about the NY Times article is that breast cancer treatment is an individual choice. Statistics can be useful in helping us make a choice, but the right choice is an individual one. For some women a PBX is the right choice, even if there is no statistical advantage to it, for others it is not. I get a bit insulted when the article assumes that women are making choices that are “not truly necessary” and assume that the doctor knows best, when the doctor isn’t the one having to live with the decision.
Mouth sores & First cycle symptoms

Sun July 20, 2014
For the last few days I’ve been discovering what chemo mouth sores feel like. Earlier I had a few canker sores. I usually get them when my iron is low, which also happens with chemo, so I was supplementing iron which mostly kept the cankers to a minimum. Then I got a true chemo mouth sore. It is nothing like a canker sore. It formed on the side of my tongue, which apparently is particularly sensitive (ouch).

There are many mouth wash recipes on the Internet, so I asked Scott to find one and make me a mouth wash from a recipe for treating mucositis (he made it in a small nalgene bottle for me):
- 14 oz of warm water
- 1 Tablespoon Baking Soda
- 1/4 Teaspoon Salt
It seems to be working. I used it last night and this morning (and after anytime I eat) and the sores are starting to get better. I now know why the doctors ask “can you eat”, as the concern isn’t the sore itself (that is a chemo side effect, and it will eventually heal), their concern is that you are eating enough so that you stay healthy overall. Fortunately, among the odd prescriptions I got from emergency (even the dermatologist was confused by this one) was a bottle of oral viscus lidocaine (like the dentist uses before putting in a needle), which is used to help provide symptomatic relief of the mouth sores to allow you to eat. So, for this one, I was prepared in advance.

I’ve created a little chart for my oncologist (and myself to allow for planning next cycle) of my various chemo symptoms in the first cycle (if you think something similar would be useful for yourself, send me an email and I’ll send you the template – it is done in Powerpoint). I will use it when I next see the oncologist to get him to write in the preventative section at the bottom information about when I should not swim, and any other activities I should be limiting at various times, as well as when I can and cannot take NSAIDs. I’m finding that I need the visualization to better understand things – and I want to make sure that I’m not being too cautious about swimming, as it is something that I need for my mental health – especially if biking may involve blistering.
Who would have thought … I look sexy in a buzz cut!

Fri July 18, 2014

Today was the trip to the really nice lady who volunteers to shave heads for those who are going through chemotherapy. We decided we needed a before picture – as Scott was also going to get his head shaved (in part in solidarity, but more because he needed a haircut).
As she shaved my head, I was pleasantly surprised by the result. I actually look pretty good with a buzz cut.

Afterwards, Mom and I went shopping. I started out wearing the head scarf but soon found myself feeling just fine without it. I was especially amused with the feel of the wind on my head with the windows open in the car (usually it drives me nuts to have the windows open as my hair flies everywhere). Then I discovered my shadow, which is very odd looking and still catches me by surprise.

There are so many new sensations – it is amazing. Even a task as simple at putting on a t-shirt feels completely different. I’m looking forward to tomorrow mornings swim and shower!

Now I just need to get a few nice pairs of dangly earrings (I welcome donations/gifts). I don’t normally wear earrings, but long dangly earrings suddenly help me dress up nice. I was never really big on fashion, and now I find myself buying a bunch of nice clothes so I have something fancy to wear to various appointments and meetings.

Definitely feeling good today 🙂