Category: Research Data

Picturing a morning sail

This morning we headed off to San Francisco for a morning sail on USA 76 with ACSailingSF. We almost missed the boat, arriving just as they were about to cast off. Fortunately, we got there just in time, and they nicely sent someone up to fetch us at the gate.

Hopping on the boat, I was immediately happy. After a little bone pain yesterday, I wasn’t sure I’d have the energy to get out sailing – but rather than it tiring me, sailing refreshed me. It was nice and windy (at least at first) so we had an excellent, and thrilling up wind leg.

We brought the new GoPro, which I spent some time playing with. Unfortunately, most of my pictures involve either my fingers or the string tether in the corner of the camera. Since you cannot see what you are taking a picture of, I didn’t quite realize it. So, I’ve chosen a few pictures that turned out pretty well.

Scott resting after having been one of the grinders raising the main.

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Under sail!

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Playing with selfies on the Go Pro.

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Some video of Scott grinding as we tack on the up wind leg.

I enjoyed some time right up at the front being reminded regularly with mist that we were on a body of salt water!

At one point I even took off my hat and buff to feel the wind on my bare skull and of course get a bald head picture 🙂

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After our sail, we had lunch with some friends on Pier 39. Overall, a great way to spend a Sunday.

Mon August 4, 2014
Picturing a walk

Yesterday we went for a 6km walk along the Guadeloupe trail which runs just behind our condo complex.

For the first part of the walk, I took the lower path hoping to get better pictures of the birds.

Unfortunately, the grasses along the river grow so tall that I couldn’t actually see the river through the grass in most places. What I did notice was that sounds were more isolated, so I could hear the song birds a lot more. It was low tide, so the ‘river’ which is rather brackish at this point was mostly mud flats.

I did catch a glimpse of the egret who appears to be rather timid. As I got close, he decided to fly up into a tree.

While Scott and I were both on the lower path, he stayed up in the tree, posing for us.

We did manage to catch him a little later down in the water.

On the way back we walked along the upper path.

And thought this sign was particularly well designed.

The end 🙂

Sun August 3, 2014
Bone-pain – a mixed blessing

When I didn’t experience a lot of fatigue or any bone-pain yesterday, I felt it was a mixed blessing. I wondered if the reason I wasn’t feeling it was because I had successfully managed the side effects (although that doesn’t describe the lack of fatigue) or was it that the Neulasta shot that came via express scripts (mailed) wasn’t stored properly such that it was ineffective?

This morning, when I started to feel the initial twinges of bone pain, I felt a bit of relief but also a bit of concern. The Neulasta is definitely working. This is a good thing. But everything seems to be running a day late (probably because of the later in the day infusion time). This means that my day early third infusion may feel like two days early infusion, and that would really suck. So, I’m crossing my fingers that the delayed onset was really just me managing the side effects better.

In looking at my medications records, it appears I did not take my NSAID before bed last night. I highly recommend the Dosecast app (available on both Android and iOS) for tracking when you actually take medication. I can never remember what pill I took when, so every time I take something I just click the “take” button in Dosecast. I can then look up when I took what, and I can print out a 30-day summary for my doctors. So when my primary care doc asked how often I was taking the heartburn medication, I could just show that particular medication to him on my phone. Very handy.

I’ve now taken my NSAID but cannot sit until it takes effect. I’m typing this from my husbands standing desk (handy that he has it!). I’m about to go out for a training walk with my iPod – which now has Warrior by Scandal loaded on it in addition to my regular mix of Bon Jovi and Bryan Adams. My walk may turn more into a moving dance than a walk!

In other notes, I’m going bald and my eyebrows are thinning. People say “you still have your eyebrows” as it seems mostly that I am the only that notices the difference. They look manicured now, and I haven’t waxed them in years! Last night when I pulled on my sleeping t-shirt I felt all prickly on the neck. I discovered that the act of pulling the shirt over my head dislodged a bunch of the remaining head stubble and embedded in the shirt collar. I had to put a buff on my head (head scarf) before putting on a clean shirt, so that I didn’t end up with hair in my shirt collar again! What is interesting is that I do seem to have a layer of baby fuzz on my head. So the hair that is falling out is being replaced with baby fuzz hair. It looks like I have more bald patches than hair patches now but the fuzz means it doesn’t feel that way.

Apply sunscreen to my head results in a hand full of little hairs!

I am reminded with each new experience to that I am approaching this chemo thing (and cancer thing) with a sense of curiosity, and that is what is keeping me sane. Now I’m off for a walk/dance 🙂

Sat August 2, 2014
Revising my stretch goals

When the oncologist told me not to wait to have surgery – that I should plan to have surgery 2-4 week after chemo. His words were “don’t waste the chemo by waiting”, I had to make a choice – triathlon after chemo or Hawaii. It was a pretty easy choice. The triathlon was proving to be challenging, as I wasn’t finding any newbie friendly events. So, I revised my plan.

One of the ladies at one of my support groups had walked in the Avon Walk for Breast Cancer. She was very inspired by the experience. I have known others who have done similar walk’s in Ottawa (known as the Weekend to End Women’s Cancers). I wasn’t so sure about the whole idea. Does the money go someplace useful? In looking into here, the answer is actually yes. Without socialized medicine, much of the money goes to provide programs for women who otherwise would not afford screening or whose treatment options would be limited by their finances rather than their choice. I am lucky, in that when I was diagnosed, we were in a good financial position, but also we have decent medical insurance. As much as we fight occasionally to get prescriptions covered, I’ve never had to make a treatment decision based upon finances. I am very lucky, and many other women are not. So, I’ve been seriously considering the Avon Walk … so much so that I will probably sign up this weekend! I’m just waiting for some answers to questions relating to international donations.

The next Avon Walk in San Francisco is July 11-12, 2015. The other coolness factor about this is just walking around San Francisco. The walk will necessary involve crossing the Golden Gate bridge at least once. Last year’s walk involved walking through Sausalito – which always reminds me of Starfleet Academy as well as walking through several interesting areas of San Francisco! For me, this event will come at a time of transition. I will be transitioning from ‘in-treatment’ to ‘survivorship’. The walk provides a great symbolic activity, and I can visualize myself walking through the finish line as if it were a bridging ceremony marking the end of treatment and all the healing from the trauma associated with treatment, to begin my life as a breast cancer survivor.

To help me start training for the walk, I’ve set a new post-chemo stretch goal of being able to do the hike down from the summit of Haleakalā on Maui. The hiking trail is 18.1km. That is double the furthest distance I’ve ever walked. It also involves altitude, so I will need to get in some altitude training.

To help with the altitude training, we have booked our anniversary weekend (September 28) trip up to Yosemite National Park. Yosemite has some nice high altitude hiking trails, so I should be able to test out my abilities for hiking at altitude that weekend. It should also be a lot nicer weather in the fall – as Yosemite in the summer is darn hot! We may do an additional Yosemite trip (or Tahoe) to celebrate the end of chemo (November 17) with one more weekend of higher altitude hikes before we go to Hawaii. We shall see. It seems like a lot of time away, but awesome healing time, spent largely in the wilderness, so definitely worth it 🙂

So there you go, my new stretch goals. Right now, I feel that they are very achievable!

Sat August 2, 2014
My ‘cancerversary’

I have found myself wondering, what day would I recognize as my ‘cancerversary’. This is typically the day you find out you have cancer. It becomes a significant anniversary in your life after cancer – as does the first day you are told you are ‘cancer free’.

Rather than choosing the day the radiologist confirmed cancer, I am choosing the day that I noticed something was different. That day, Scott and I went on a 27km bike ride around the Alviso Slough on the southern tip of San Francisco Bay (just north of where we live now).

I took several nice pictures, including these.

When I got home, I hopped in the shower as usual. Everything seemed rather normal until I went to dry off. The discharge from my left nipple was green (it was not abnormal for me to have clear discharge). I’m not sure if I noticed the change in shape then (a little concave bit above the nipple) but I did notice that when I laid down that there was a harder spot – but to me it felt more like a contracted muscle. I thought maybe I had pulled something.

In the following days, I Google’d green discharge to see that it was no necessarily abnormal. Red is definitely a bad sign, but green wasn’t. The following Monday, June 9th, I decided to call my family doctor – cause well – it was better to have peace of mind. I even said “I think I’m being neurotic and it is nothing, but thought I’d get it checked”. The look on her face when she checked was pretty telling. It needed to be checked because there was definitely ‘something’ there.

Anyways, I’m derailing. The point is, I first noticed the change on June 1st. So, although the change was confirmed by the radiologist on June 12 (with 98% certainty, they couldn’t be 100% certain until the pathology was back the following Monday), I think I shall indicate my ‘cancerversary’ as June 1st. It will be interesting to see what my reflections reveal on that date next year!

Fri August 1, 2014
The transformative power of a bike ride

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).

Thu July 31, 2014
Breast cancer pet peeve – it is not a “lump” (public service announcement)

My breast cancer pet peeve of the day is the word “lump” … cause, well, it doesn’t FEEL like a lump! The word lump actually is misleading and causes too many women to NOT get something checked out. It is part of why I waited a week (fortunately, I only waited a week).

So, first and foremost – get to know YOUR breasts. I checked mine every time I got in the shower. I suds up with soap and feel around and inspect. I also look at myself in the mirror and look down when I dry myself off. So, when something changed, I noticed!

Many women have lumpy breasts. Some of the normal tissue in your breast feels lumpy. It isn’t the normal lumpiness that is the problem – it is the change that is problem. The first I heard of nipple retraction was AFTER I was diagnosed. What I noticed was a hard spot – an area that felt firmer than normal – which I initially associated with what I thought might be a muscle strain, but when it didn’t away I got it checked out.

Above is a MRI image of my left breast. It shows the two masses. The upper is a known malignancy – this is the one I felt and it is my largest mass (depending on the scan measuring somewhere between 3 and 4.7 cm in its widest dimension – MRI measured it smaller than ultrasound but they won’t really know until they take it out and do a full biopsy on it). It is not a regular shape – it is not this nice round “lump” – rather it is an irregularly shaped mass (it doesn’t look 3 cm in this angle, they measure it in three dimensions based upon the largest size). The bottom mass shows up on MRI only (I’m getting it biopsied tomorrow) – it is suspected to be cancer only because I already have a known malignancy. The point I wanted to make on this picture was the irregular shape of my breast. I can visually see when I look in the mirror, while looking down that my left breast isn’t smoothly curved. This is a sign that something is WRONG!

BTW – I think it is way cool that I can just sign a form and they mail me CDs with all the images from scans that have been taken. I find the MRI images particularly interesting. I get a full copy of the radiologist’s report, so I know which images are most interesting (there are 15,000 images from a standard diagnostic MRI).

So, if you don’t do annual mammograms (and even if you do), it doesn’t hurt to just ‘cop a feel’ and check out your breast EVERY time you hop in the shower …

OK… done with the public service announcement for the day. Time for a bike ride!

Sun July 20, 2014
Meltdown

Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part. I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

Mon July 14, 2014
Scrapbooking

I saw a Facebook post from a friend the other day about scrapbooking. It isn’t something I’ve wanted to do before – what on earth would I do with a scrapbook once it was done. But now, I’m receiving so many wonderful post cards and other such beautiful ‘thinking of you’ that my cancer binder is filling up (I have a binder that they use to chemo treatments and reactions, where I started to put the various cards and letters).

I know nothing of scrapbooking, so I decided to Google it. Apparently, cancer scrapbooking is quite common – it is a way to trace your journey and give it a life of its own. There are many different layout suggestions, but these are focused mostly on a way to capture your journey – which I’m already doing in this blog.

So friends who are scrapbookers, any recommendations for a good starter-kit or must-have items? I don’t really want more stuff (we have a small apartments and are constantly looking for way to remove stuff not add it). The purpose of the scrapbook is mostly to help keep track of all the wonderful gifts I’m receiving and the various warm thoughts – it is is more of a ‘we are thinking of you’ scrapbook rather than a cancer book per se. Most of my journey itself will be posted on the blog (with lots of photos) and my quantified medical self is tracked in my cancer binder already.

Mon June 30, 2014
T-shirts

When I was young I remember a T-shirt my mother used to wear that said “Don’t stare, grow your own” … A friend emailed me about a friend going through chemo who had a T-shirt “Like breasts? You can have mine, they are killing me!” Morbid but funny.

I find myself wanting a new jersey for biking. One that says something like “I bike to survive … ” or something like that … cause really, I bike to stay sane, and when I start going through chemo and doing crazy things like trying to bike Mount Hamilton during chemo (cause I wanna), then I need all the support from passing cyclists I can get!

I should also make a shout-out to a friend from our Going East tour – Jim is a real inspiration for me. When he was diagnosed as HIV positive back in the 80s (when so little was known about HIV/AIDS) he hopped on his bicycle and went on tour. He attributed his riding to his survival. Every time I get on my bike to ride now, I am reminded of our brief visit with him.

Sun June 29, 2014