Category: active treatment

Transitions matter

Talking to my friend Stacey this morning, and reflecting on the BCC (Bay Area Women’s Cancer Connections) Young Women’s Group for those in treatment and post treatment, I see a need for some form of “graduation ceremony” or “bridging ceremony” .

At the BCC Young Women’s group, what I noticed was a very large group, where many close connections had been made. But also, the group was too big for those of us who were new. It was a bit intimidating, but also in order to give each person the 10-15 minutes they needed the group ran over 2.5 hours – which if you are actively in chemo treatment, is just plain exhausting. I had to choose not to attend because I couldn’t bare the thought of being there that long right after treatment.

I struggle with the group being both “in treatment” and “post treatment” because they have another group which is a survivorship group. But what I saw was that with young women the actual post treatment is a long time. Treatment isn’t just surgery, chemo, rads .. it can involve several more surgeries and lots of follow ups. It is almost like they need three groups, one for those of us “in treatment” – cancer warriors as I like to refer to us. But I also see the need for another group to help those who have moved beyond that “in treatment” stage who are still fighting the issues of reoccurrence and addition proactive surgeries. So I see the need for the group, but also I see the need for people to make the transition to other groups, post-treatment, and survivorship, but there is no mechanism that I see to encourage that transition. Without that gentle ‘kick’ to move from one group to the next, the initial group doesn’t provide the support it needs to provide to the young women who are newly navigating the experience.

In my discussions with Stacey this morning, I heard her desire to not be seen as “cancer Stacey”, but rather some new “Stacey” who isn’t first and foremost someone surviving Cancer. Again, I see this as a huge transition. It is a graduation of sorts. Not all women make that transition at particular time, but at some point the transition usually happens. For me personally, I’m looking to the Avon Walk and next fall when I formally re-emerge in into my thesis process as that transition. In the spring, I will begin by attending academic conferences, where I’ll still clearly be Cancer-Becky – as I’ll be hairless, and I may even be presenting on topics relating to being a breast cancer blogger. But in the fall, I will be writing my dissertation, and reporting on my life before cancer. I won’t be writing as “cancer-Becky” I’ll be writing as Ed-Tech Rebecca.

Similar to working through the PhD process, it is important to celebrate the transition we make. Some of them are easily identified (e.g. passing comprehensive exams, getting your proposal accepted, the last day of chemo!). Others are more mental transitions, that take time … but when we are ready to self-identify and make those transitions, it would be so much easier if there were a more formal way to make that declaration – to celebrate the change.

So Stacey .. if you are ready to make the transition, how do you want to celebrate it?

Wed August 6, 2014
Cycle three

So I’m officially 1/2 way through the AC chemo. The AC is supposed to be the harder part – the T chemo, which is done weekly is a much lower dose. With the AC chemo, I take a cocktail of pre-chemo meds to counteract the side-effects – mostly to fight off the nausea. In theory, when I switch to T chemo I won’t need any pre-meds or anything to fight nausea. Here is hoping.

Did not have my expert photographer (Scott) with me when I visited my tree for the requisite selfie – so the shots aren’t as well composed, but fun none-the-less. I really noticed that the tree smelled like eucalyptus, so I wonder if it is pollen season?

Scott was by my side during at least part of the chemo treatment and took this excellent artistic shot. I was next to the window in treatment today (my preferred location), so I can look out at the tops of a few trees. I like the natural light and having a sense of how the day is passing by.

So far, so good.

Wed August 6, 2014
Is it tired or it is fatigue?

I find myself asking the question, am I tired? or am I fatigued? I used to think it was the same thing. I’m learning that it is not.

The symptoms are similar if not the same. Heavy eyelids, yawning, lack of energy.

When I’m tired, I can take a nap and I usually fall asleep quickly. When I’m fatigued, laying in bed results in restless lying around, and sleep does not come. Fatigue responds better to exercise than it does to sleep; however, overcoming the inertia of fatigue in order to get to the exercise is a challenge.

For the most part, this chemo cycle has been easier on me than the first cycle. I knew what to expect and I knew when to take which medications, and I charted out which days to avoid certain activities. I managed the side effects a lot better. However, the one side effect that I felt more of throughout, was fatigue. At various times, I found myself weighted down with fatigue. I felt tired but napping was ineffective.

Now that I appreciate the difference, I know what to do. This morning I was definitely feeling fatigue. Trying to go back to sleep didn’t help. Hopping in the pool and swimming 800m did. Feeling much more full of energy now – hopefully enough to tackle Costco and Safeway so the house is well stocked when nausea hits!

Mon August 4, 2014
My bald head

There are times when I find myself wanting to cover my head in something stylish – and I like looking good. There are times when I run out to take out the garbage and I cover my head so as not to scare or make uncomfortable anyone who I might happen to cross paths with in the corridors of the condo.

Today, when I was out sailing, I mostly wore a buff and my Tilley hat.
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I usually wear my Tilley hat sailing, so anyone who has seen me before would not notice any difference. There was a brief moment when I took my hat off for a picture – cause I really wanted a picture with the waves and my bald head – mostly for posterity. But I also wanted to feel the wind on my head. At this point, it was easier to put my buff and hat back on, as I needed my hands to hold onto the boat!

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But, towards the end of the sail, when it was a little less windy and cold, I found myself wanting (craving) to talk off my hat so I could experience the feeling of the wind on my skull. I love the feel of the wind on my bare head. But I didn’t. I was afraid of how the people around me would react. I was not afraid of showing my bare head, but I didn’t want to make others feel uncomfortable.

When in the car, I often strip off my head scarf. It is either too hot, and I want to cool down, or I’m on a slower road and I want to drive with the windows down. Again, that feeling of breeze on my bare skull is delightful. When I’m in the car, I’m not worried about how my baldness might make others feel (even when stopped at intersections). I’m conscious about it, but not worried about it.

When I had a shaved head, I didn’t worry about it. I often went out without covering up. But now, my head is patchy. It is mostly bald, but still has some patchy bits of hair. Sometimes when I swim, I don’t worry about it and just go bare. Last time I swam, I wore my swim cap. I was OK with changing from my buff to my swim cap at the pool, and I even used the pool shower and exposed my naked head (but found myself hoping that when someone walked by that they didn’t look my way). But I didn’t walk to or from the pool with a bare head.

So I’m of mixed feelings right now. There are times when I want to look fashionable that I am happy to have my head covered in a pretty scarf/buff/whatever. It is a part of the outfit and actually dresses up what I’m wearing. However, there are times when, I would rather not bother covering up. Although, from a practicality perspective, I do need to concern myself with sun protection. My bare head cannot go out in the sun for any length of time, but it certainly craves being exposed for short periods of time (and I do hate wearing a buff under my bike helmet, but I need the sun protection).

So I wonder, how much should I worry about what other people might think? Do I worry about the discussions parents might need to have with their children after seeing me? Is that something that I should even care about?

Mon August 4, 2014
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
Reflections on body image

Walking today, my husband mentioned by blog post about my improved body image. He ask if it was because my focus is now on strength rather than fat or weight. It occurred to me at that point that is was actually my physicians response to my body that was perhaps the biggest factor in my changed body image.

My family medicine (primary care) doctor mentioned my body only in that I needed to consider my body weight. That I was at a point where I was starting to tip the scale towards obese. I was carrying too much weight. Yet, there was no focus on how strong I was or any other aspect of my physical health. I eat relatively healthy (healthier than most), and I exercise perhaps a little excessively compared to the average person. And yet I never really saw myself as someone who was in good health.

Then I saw my oncologist. When looking at my health overall, he listed it as “excellent”. I was rather proud of that fact. And going into treatment for cancer, I felt stronger than I’ve ever felt. I felt healthy! Actually that too was an interesting challenge, as I felt strong and healthy, so did not see myself as ‘sick’. The whole cancer thing causes a cognitive dissonance, as I feel like I’m in excellent health.

Upon reflection I realize just how large of an impact the view of my physicians has had on my overall self perception of my personal body image. Before cancer, I felt that I was overweight. Even though I was in good shape from a cardio perspective, and pretty strong (regular 30km+ bike rides), I still felt ‘fat’. I felt ‘overweight’. I knew that I was 20-30 pounds over my “ideal” weight. But now, (OK, I’ve lost 10 pounds, but still), I’m much happier with my body the way it is. I’m proud of the classification of “excellent health” in my oncologists records.

I think it is just interesting how much weight I put on the opinions (or perhaps the presentations) from my doctors … and wonder, what family (primary care) physicians might learn from this reflection?

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