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I found it interesting the other day, walking with new friends, that they had never heard of Terry Fox. As a Canadian, we are taught about Terry Fox’s worldwide legacy, so I somehow expected that those affected by Breast Cancer (and activists within the breast cancer community) would have at least heard of him. Terry Fox is a Canadian hero after all. The annual Terry Fox Run (today in Canada – although it is an international event) is the world’s largest one-day fundraiser for cancer research (according to Wikipedia).

I don’t know if it is because of my age, but those of my generation (and older) actually remember when Terry Fox was running across Canada in his Marathon of Hope. And I remember the sad emotions associated with the day that Terry had to stop his run because his cancer had returned. Although I don’t remember doing any Terry Fox run’s myself, I do remember picking up my brother after he did the run one September back when I was still in elementary school (not sure what year this was – but early 80s – so picture was taken at one of the first Terry Fox runs).

Terry’s journey was done at a time before cause marketing was a big thing – actually, in doing some more reading about it, Terry Fox actually turned down opportunities for corporate sponsorship. Today, when “pinkwashing” is a huge issue, it is nice to see that the annual Terry Fox Run is still run without any corporate sponsorships.

Note that I don’t think cause marketing is a bad thing. Cause marketing helps a lot of charities raise a lot of money – when done right it is a ‘win-win’ for both the corporate sponsor and the charity – and honestly, it is a lot better than nothing – which in many cases is the alternative.

Terry’s journey continues to inspire school children and adults alike (may schools also do Terry Fox runs in early September every year). One of the most touching notes I received when I was first diagnosed with breast cancer was when a friend said that her 5 year old daughter said she would do the Terry Fox run for me. As I write, it still brings tears to my eyes.

You can donate directly the Terry Fox Foundation at http://terryfox.org/.

The picture above was taken at the Terry Fox memorial just east of Thunder Bay Ontario on our Going East bike tour. It marks the spot where Terry had to end his Marathon of Hope.

I was fine this morning. I woke up feeling pretty good, but have since experienced a cognitive decline. I did get out to run a few errands, which involved driving. I was fine when I first set out, but not doing too well by the time I got home about 90-minutes later.

After my bike adventure yesterday, I brought my wheel in for repair. The rim is dead – so a new rim was in order. The total cost of this repair will be about $200. Although the rim itself is only $60, the cost of rebuild the wheel in labour adds up. I suppose this isn’t unreasonable given the bike is over 10 years old, and this is the first significant equipment failure.

Walking into the bike shop I began to notice some numbness in my step. Noticing that I’m not completely feeling my feet. I associate that with neuropathy. On the drive home, I begin to notice that my multitasking abilities are going. I notice that there is some mental separation going on between me and the world around me. The best way for me to describe it is almost a drunkenness. It is at this point, that I make my way home and decide that I shan’t be driving until this cognitive numbness fades. Even as I type, I have numbness in my hands – again, I had originally thought of it as neuropathy, but now I’m seeing it more as an overall cognitive numbness rather than a specific feeling of numbness in my hands.

I tell myself, that now would not be a good time for making any major life decisions – or even doing any serious academic work. My mind is just not as sharp as it should be.

I am still planning to go out for a bike ride. I think the exercise will do me well, and hopefully will help clear my mind of the fog. With my road bike out of commission, I’m going to ride my ‘bent today. I had a hint of some nerve pains last night before bed, but they haven’t returned yet today – so I’m hoping they stay away. I want to get the bike ride in today just in case the nerve pain starts again – if it hits as bad as it did last cycle I won’t be physically able to ride – so must get out while I can. On the fatigue front I’m doing much better this cycle than last. I’m not feeling the overwhelming tiredness I had at this time last cycle. So, there is hope that I am rebuilding my strength.

Definitely experiencing ‘chemo brain’ today!

I’ve been blogging a lot over the last two days, but not really talking about how I’m doing. I haven’t really said much about the side effects I’m experiencing with the Paclitaxol (taxol) and various premeds.

One of the premeds is a steroid, which certainly leaves me feeling bouncy for the first two days. I’m trying to harness that extra energy by getting lots of work done, but also getting out for exercise. Last week, I was still feeling the effects of the mouth sores from AC and low red blood counts. Yesterday, when they tested my blood it was almost at it lowest – so not surprising that I was fatigued most of last week. Today, I’m feeling a lot more energetic, but I cannot say if that is from the steroid or if it is a sign of improvement in the red blood counts. In the last round, I started feeling nerve pains on Wednesday, which got really bad Wednesday night, were eased a bit on Thursday with pain meds but worsen with joint pains and fatigue. It was pretty horrible. Things were still problematic on Friday with nerve pain, joint weakness, overall fatigue, and some neuropathy as well. Overall, it wasn’t a great week. So I’m waiting to see how things go this week. My first side effect (redness in the eyes, face, and neck) have been much less this week that last – so hopefully that is a sign that the side effects will be less.

I had hoped to get out for a 20km bike ride today. That was my goal. I choose my fastest, lightest bike (my road bike), so that there was some hope of success. I was cautious when I first started riding, and definitely felt the weakness associated with the low red blood counts but also with a two week break in significant exercise. Once I climbed the hill onto the path, I was feeling pretty good – taking it easy, but enjoying the ride. When I got to about 7km, I felt that I might actually make my 20km goal. Then at just after 8km I felt a thumping and thought I might have something stuck to my tire. I examined the tire, didn’t see anything, tried to ride again but it was worse. After another examination, I noticed a bulge in my rim. Seeing this as a sign of imminent rim failure, I turned around but soon discovered the back wheel would no longer take my weight – I was destined to walk the bike home. Fortunately, although I was 8km into my ride, I wasn’t 8km from home (my ride takes me back and forth along the path, so I pass my house multiple times). I ended up walking almost 3km.

As I walked home with my bike, along the path, during the height of peoples’ daily commute, I was struck by the sheer number of people who slowed down to offer assistance (more than 20 people slowed down and asked if I was OK in the 30 minutes I was walking on the path). One person even asked if I needed a spare tube. It is comforting to know that if I did end up with a flat on the side of the path, that I would have no shortage of people willing to help me change my tire.

One side effect that I’ve had since the start of taxol has been insomnia and disrupted sleep. I’m finding that through the first half of the night I wake up hourly (I usually take a peek at the clock). I may feel that I’ve slept for a long time, but wake up to see only an hour has passed, and I have difficulty getting back to sleep. This repeats itself until about 3 or 4 in the morning, and then I seem to sleep for 2-3 hours. I may end up in bed for 10 hours, but only get 7 hours sleep. Last night I tried something different – I was wired up from the steroids, so rather than trying to sleep, I just stayed up and worked (wrote a lot of blog posts and answered several lingering emails). I didn’t go to bed until 2am, but unfortunately, I still found that I was waking hourly for the first part of the night. Today, with some exercise, we’ll see if that helps with the sleep. Unfortunately, it didn’t involve as much aerobic activity as I’d hoped – so not sure if it will make much difference. Hoping to get out for a ride on my ‘bent tomorrow.

So today is my second Taxol infusion. We are definitely “regulars” at the infusion center. When one of the computers started its chant, we knew what it was saying, and what to do about it. If you listen carefully, you can make out that it is saying “low power, low power, low power” … so when it started, I sent Scott off to plug in the offending device so it didn’t drive us (and everyone around us) crazy.  We are now set up with a table, so that we can both sit here an type away at our computers – which helps immensely with the passing of time. The blue glow on the top of my bald head is amusing!

In the gap between blood draw and my infusion, we walked over to my tree for a picture.

We had a few extra minutes, so I laid down on a pile of wood nearby and watched the world go by. It is sunny out, with a nice cool breeze. It really is too bad that we cannot do treatment outdoors – perhaps under a tent. They could set up a nice outdoor treatment area in one of the various wooded fields nearby. That would be pretty amazing – I’d definitely opt for outdoor infusions! Anyways, I took a snapshot of my view as I was laying down enjoying a brief time in the outdoors. Interesting that as I looked up there were three different kinds of trees in my view!

The treatment regime I’m on is weekly Taxol for 12 weeks. So, I have infusions every Monday until November 17th (if all goes well). Taxol is also sometimes given as biweekly (once every two weeks) for 4 cycles. That type takes less time and requires fewer trips to the infusion centre, but it also has more side effects. So, I opted for the less convenience but also less side effect variety. In theory the side effects that I experience after the first cycle will be less severe over the next cycle. We’ll see how that goes!

When they start taxol, there are often allergic reactions. The allergic reactions are to the preservative used in the Taxol rather than the taxol itself. So, a taxol treatment begins with pre-meds (IV Benedryl, Decadrone (steriod), and pepsid). I mostly notice the pepsid as it calms my stomach when it it given. Each of the pre-meds takes 10 minutes. After all the premeds are given, we wait for 30 minutes for them to take effect. The taxol itself will eventually take 1 hour, but for the first couple they do a slower drip (the nurse follows you carefully to ensure there is no reaction). So, I expect to be in the infusion area for about 3-hours once everything gets started.

Last week, my labs indicated that my red blood cells, hematocrit, and hemoglobin were low. Last time they were this low, I had a transfusion. Throughout this week I also felt more tired / fatigued than I did through my last round of AC. So, I’m now waiting to hear from the doctor to find out what if anything we are going to do about it. I’m looking forward to having my energy back!

I was writing a comment the other day on a friends blog post, about how I blog because I have to. I have a ‘muse’ which compels me to write something. Something will happen during the day, and an idea will spark. After thinking about it a bit, I usually have some form of blog post that just must be written.

This last couple of weeks have shown how my ‘muse’ can be affected by by how I’m physically and mentally feeling. Early in the week I was making great process with a bunch of academic work that I needed to do. I was on the computer most of the day. I even wrote a few blog posts – but then, I got tired. Fatigue hit but so did zapping muscle pains (I’m told these are a side-effect of Taxol and should reduce after the first few treatments). The combination meant that my brain just shut down. I could barely manage reading my email, never mind answering it.

At those times I also feel like I don’t have a whole lot to say on the blog. It is like the day goes by without me really participating in it. I find myself wishing the time would pass faster, so that my energy might return faster – wanting to go back to the energetic self that was out walking, biking, and/or swimming every day.

The pool will soon be shut down for the season, and I shall miss it. It has been cloudy in the mornings, which means the prospect of a swim less enjoyable. When I say shut down, they don’t actually close the pool, they just stop heating it. Once they do that, it becomes too cold to swim.

I haven’t been out on my bike in ages. I hope to get out for a ride tomorrow. If this week is anything like last week, I shall find myself feeling good on Tuesday, and less well on Wednesday.

Mentally, the one week cycles are a bit more difficult to manage. I feels like I haven’t recovered from one before I’m up for the next. Although I felt like I had not fully recovered from AC chemo before I started Taxol. So, last week may have involved some lingering effects.

Taxol also seems to be affecting my sleep more than the other meds. I seem to be having difficulty getting a decent nights sleep. Now, I wonder how much of that it due to not enough exercise? Either way, it quickly becomes a vicious cycle of not enough sleep and not enough energy. With each day, I hope to feel stronger on the next. I want my energy back NOW!

My new sense of energy was unfortunately short lived. Although I must admit, I was able to get a lot of academic work done over the last couple of days. It has been interesting to see how I have been able to focus on some work, although I have yet to be able to read an academic journal article. I’ll need to try to focus on that in the days to come.

Tuesday I worked most of the morning on a research ethics proposal. I was feeling rather productive, so it was a challenge to take a break and get out for a swim – but I needed the exercise – so I went for an afternoon swim. I was feeling pretty strong! After my swim, however, I notice that my eyes were sore and my face and neck were red. I had originally attributed it to using an ointment on my eyes the night before, but with further reflection it was likely a reaction to either the sun or the chemo. I took benedryl and slept well that night.

Wednesday I woke up feeling kind of yucky. It is so hard to describe. They talk about “flu like” symptoms, but it isn’t really flu like. My stomach was unsettled, but I wasn’t nauseated – at least not like on AC chemo. Either way, I didn’t feel great yesterday and I was low on energy. I did manage a couple of walks – one to the grocery store during the day and another in the evening.

This morning I woke late (after almost 11 hours sleep). I’m definitely feeling fatigue, but it isn’t like before, it isn’t relieved by exercise. I’m also feeling nerve pains. These are quite annoying and they prevent me from sleeping. At one point last night I took Tylenol to make the pains stop. It is just random pains flashing over my body, coming on like a pulse and then fading away. They are energy sapping.

I don’t know quite what is going on with my body right now – but I am definitely looking forward to getting my strength back again. I can only think that I’m still recovering from a difficult last week of AC chemo. I’d like to get back in the pool but I’m afraid to swim when the sun it out – I don’t want to have another reaction. So, I’m hibernating for now, waiting for the sun to go down, and then perhaps I’ll get out for a bit of a walk. I’m also waiting for a call back from the nurse, who might be able to explain what these pains are that I’m feeling – and perhaps what I shall about it! This too shall pass…

Regularly I see posts on Facebook where people count their blessings. Since my diagnosis, I have counted my blessing regularly. Perhaps the biggest blessing has been this move to California.

Last summer I began to developed issues with my vision. I had cloudy vision in my left eye. Unfortunately, I went to see the eye doctor at Lens Crafters (a mistake). He mentioned cataracts in passing, but dismissed it and prescribed some reading glasses. The reading glasses helped for a short while, but my vision continued to degrade. In late October, I went to see a proper optometrist, who diagnosed me with early onset cataracts (in both eyes). It was the first time in my life that an optometrist was not able to correct my vision with lenses. The optometrist referred me to an ophthalmologist, but the earliest appointment I could get was in March. I was told that after the initial appointment, cataract surgery would be 4-6 months out. I had already made plans to move to California in May (after the first possible surgery date) – so the next logical step was to look at doing the surgery in California.

I should also point out that with each passing day my vision was worsening. I recall one bright sunny day at the market in California (before surgery) where I could not see into the stalls. I was completely unable to see the shaded areas in bright sunlight. I had completely given up night-time driving (which was a challenge when I was in Ottawa alone in the winter time, when the days were short). I needed a hat to see in bright sun, as the sun was catching the cloudy lenses dispersing the light. I was going blind.

Fortunately, I was able to see an ophthalmologist in California in January (once I was on Scott’s insurance), and on January 29th I had my first cataract surgery. Once the first was done, it pointed out just how bad the second one was. I had no idea my vision had degraded that much. In early April I had my second cataract surgery.

It occurred to me the other day that had we been in Canada, I would have been diagnosed with breast cancer before having had cataract surgery. The breast cancer treatments would have meant that the cataract surgery would have had to wait. I would have had to go through breast surgery and chemotherapy while going blind. It would have been truly a nightmare.

Previously, I thought the silver lining was a financial one. Having done the cataract surgery in California in January meant that by the time my cancer diagnosis happened I had used up my maximum out-of-pocket expense limit. This means that I no longer need to pay the co-pay for doctors visits. It will mean the co-pay portion of my surgery (assuming it happens in December) will not apply. It had not occurred to me until just a couple days ago, that the true silver lining is that I am going through this process with my vision! I can only imagine how horrible it would have been had I not had the cataract surgery in advance.

So, I’m thankful for the move to California. I’m glad to be someplace where I have access to a nice swimming pool, a nice walking/biking trail, and a decent apartment. I’m thankful for the nice weather – although I would be thankful for a rainy day now and then too. Things are pretty dry around here. And I’m mostly thankful for being here with my husband. A year living apart was enough – I don’t think we’ll be doing that again anytime soon!

“But I’m happy to be alive”. I read this a lot in breast cancer social media streams. The sense that people are going through all these invasive treatments, and that the treatments are saving them. They live through adversity and are happy to be alive at no matter what additional pains and discomforts are thrown in their path.

I read this, and I seem to alternate between the sense that breast cancer will kill me or that breast cancer won’t kill me. Either way, I don’t have any sense that treatment is what is making the difference. Treatment is just something that I need to do – but I don’t have that feeling that treatment is tied to the outcome.

When I’m not feeling great, I more often get the sense that breast cancer is going to kill me. I question how much awfulness in treatments I’m willing to put my self through if it is going to kill me anyways. But, on good days, when I don’t feel awful, I feel that I’m a survivor. I can see beyond the treatment, to living my life again without it always being about breast cancer. I can see beyond the treatment, into living with NED (no evidence of disease).

You see, doctors don’t know what causes metastatic disease. I found the cancer early – so that is good – but it doesn’t mean the disease will or will not metastasize. The known treatments are intended to reduce the odds, but that is all they do. In many ways, it is fate that plays the biggest role in whether or not this kills me. Treatment may change my odds, but the odds are still there. There is still some unknown that will determine whether or not I’m in the percentage of people that survive this disease or I’m in the percentage of those who won’t.

I am feeling much better today. I’m actually feeling the closest to “normal” I’ve felt since I began chemo. I’ve been working hard all day on my ethics proposals for both my thesis study and a new evaluation study. I’m able to concentrate on academic things for the first time in a long time.

That being said, I cannot say I buy into the “happy to be alive” message. That is, I’m not unhappy to be alive, just that I don’t feel like my life has mysteriously been saved such that it would make me especially happy to be alive at this particular moment in time.

It occurs to me that after next weeks infusion I will be half way through chemotherapy. I’ve finished what for most people is the worst of it, AC chemo, and am now on Paclitaxol (taxol for short).

Going into the infusion yesterday I was scared. I was afraid of the side effects of the new regime. I was afraid of going into a new type of chemo when I was not 100% better from the previous treatment. In all my rounds of AC chemo, I went into the next infusion ofter at least 2 days of feeling strong – usually after having gone on at least one bike ride over 90 minutes. Not this time, my longest ride this cycle was 40 minutes and that took everything out of me. The mouth sores proved to be the side effect that took the most out of me (even more than the low red blood cells).

I’m happy now that the mouth sores have almost healed. I swam yesterday – still not strong and my red blood cells are not at their finest (despite the transfusion two weeks ago) – but I’m getting back to myself. I work up this morning feeling almost normal. Coffee still doesn’t taste as good as I’d like it, but that might just mean I need to open up a new package of coffee beans!

More importantly, my brain is clear and I’m feeling physically good. I hope to get some work done today as I have an ethics proposal that is due on Thursday and requires a day or two for logistics of getting it printed and hand delivered in Ottawa – so if I can get it done today that would be awesome.

I’m very happy that I don’t feel the same fog that I felt after AC chemo. I have a little nausea, but not a lot. I’m fighting it to the same extent. I am paranoid about neuropathy, so every timing I feel a tingly in my feet I get concerned.

The one side effect I did feel during the infusion, and also afterwards, was hot flashes. I go from being comfortable of cold, to suddenly needing to rip off all extraneous layers of clothing and sweating. This can be problematic when I’m someplace where it might be inappropriate to take off my head scarf! I will need to invest in a little fan for my purse, for those moments when I’m in a restaurant or meeting and suddenly need to cool off.

I haven’t shared any pictures lately. Here is a picture of our Sunday walk along the bluffs at Wilder Ranch State Park (near Santa Cruz).

And the requisite pre-chemo Becky leaning on her tree photo:

And a Scott and Becky selfie – notice how short Scott’s hair is? He had it shaved last Saturday!

One of the challenges with cancer is that you often required to deal with the unknown. My approach to managing fear of the unknown has been preparation. I have tried my best to physically prepare myself for treatment, so that I can bounce back and managed the unknowns ahead – specially the unknown about how I will react.

This last week has been a struggle. The mouth sores have really put me down. I’m tired. I’m not sleeping well, and I haven’t had any exercise since my long walk on Monday (a full week). I’m definitely in a funk.

Today I awoke and for the first time in a week I could open my mouth without pain. I can even stick my tongue out and blow my husband a kiss (these are things I haven’t been able to do). My mouth isn’t 100% better, but at least it isn’t screaming in pain anymore!

Unfortunately, I’m still tired. I’m not my spritely self. I’m not going into this infusion with the same flighting and chipper attitude that I have the previous. On FaceTime chats last night both sets of parents indicated that i looked tired. I am hoping (crossing fingers) that a swim changes my outlook. Getting a little exercise should help me feel better – it has worked in the past, hopefully it shall work this morning!