Category: chemo

A perfect morning

It’s 8 am, infants are crying, jays are squawking, there is a fine mist as the park is covered in morning fog from the ocean. It is a perfect morning at Big Basin Redwoods State Park.

Scott has actually fallen back to sleep. This is my time, first thing in the morning. I crawl out of the tent at about 6:30am, my sore back making it impossible for me to sleep any longer. I make my morning cup of coffee and read my book in peace as the campground around me begins to awaken.

I was worried about how I would sleep in the tent. It turns out I actually had one of the best nights sleep since the last round of chemo. The fresh air certainly helps, but also, with the air mattress and thermarest combo that I use, I was actually able to sleep part of the night on my stomach, something that I haven’t done in a long time.

As I write, the pretty jays are harassing each other around the campsite (you can see a couple in the tree on the right side of the picture). The make an awful noise and they are true pests. They eat the eggs and babies of the endangered marbled murrelets which nest in the area. The campsite is “crumb clean” and leaving any garbage or food out can get you an $850 fine! This year they started handing out fines and increasing the awareness campaign – but it may already be too late. There are a lot of these pesky Jays around.

In addition to the jays, and screaming children, you can hear the occasional woodpecker pecking at nearby trees.

What we didn’t see last night, a pleasant surprise, was raccoons. Last time we camped up here they were real pests (if you leave your car door unlatched, they will open it! Fortunately, we had our dinner before dusk and all food was safely stored before racoon time.

Next to the picnic table is a ring of ancient redwoods (a fairy circle). The ring is formed when an old tree dies and feeds a series of new growth. These younger trees are likely over 1000 years old themselves. It is pure magic and exactly what I needed in this moment.

And of course I need to include the requisite morning selfie.

Sun August 10, 2014
On my way back

After the abyss that is day 3 and day 4 after chemo, I feel that I am coming back to life. It is a rather dramatic transition really. Swimming on day three I struggled to swim 7 laps (280m). Today, I thought I’d push myself to make at least 10 laps, but then something clicked – the fatigue let go – and I swam 20 laps (800m).

So the real me is coming back to life. I’m still rather limited in what I can do. Blisters on my hands are re-emerging, and I have blisters on my feet that may limit walking – we’ll see how my feet feel in my new running shoes. Biking is out for a couple more days, as it contributes to the blisters – so swimming is my main exercise until that gets cut off, which by then I hope to be back on the bike and walking again.

One more cycle of AC – there is light at the end of this tunnel.

Sat August 9, 2014
So I bit the head off of the repair guy

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!

Fri August 8, 2014
So I did it, but I need your help

So, I did it, I signed myself up for the Avon Walk. This is a fundraising event that involves walking 39.3 miles over two days. The first day you walk a marathon, and the second day you walk a half marathon. The walk takes place through the city streets – in my case, it will be through the streets of San Francisco. As this is a fundraising walk, I need your help. In order to participate I need to raise at least $1800. So, I’m asking for your help. My fundraising page is: http://info.avonfoundation.org/goto/rjhogue. I may seem like a cliche statement, but every little bit helps.

I really debated signing up for the walk. I don’t generally like these large fundraiser event type things – but I was motivated by several things. First, one of the ladies in one of my support groups spoke very highly of it. She said she found a lot of encouragement in the crowds that gathered to cheer them on. It as an emotional but very uplifting experience, and that takes on a whole new meaning when you are walking as a warrior/survivor.

I looked into where the money went. I’m lucky to be located near Stanford, a center for excellence in breast cancer treatment. It is where a lot of the clinical trials happen. It is one of the few universities in the US that set the standards of treatment for the rest of the country. But I’ve also been lucky to be near Bay Area Women’s Cancer Connections (BCC), an organization that has provided me with a lot of support. There are lots of free resources that have been made available to me. I’m also very aware of a lot of women who are cancer poor. Women who have to make treatment decision based upon their finances. And I don’t even see the women who don’t get screening done or who have very limited access to healthcare. It is a real problem here – and so events like the Avon Walk providing funding for research, they also provide resources for women who could not otherwise afford them.

The final reason I decided to do it (other than the cool opportunity to see San Francisco) was the timing of the walk itself. I’ve started to look beyond treatment – I’m making the move to look ahead in my life. The walk will come at a time when I should have completed the major treatment phases of breast cancer (chemo and surgery). There is some hope that after surgery I get declared “NED” (no evidence of disease). The treatment doesn’t stop there, as I’ll be on hormone blocking medications for 10-years – but I should be disease free. As such, the walk will mark a transition – from warrior to survivor – and that is something significant and should be celebrated.

As I write this, it is day three of my third chemo cycle. I had a great visit with a friend today which did a good job of distracting me from how awful I feel on day 3. Last cycle I also felt awful on day 4, so I have a reiki appointment which will hopefully fill me with healing energy and get me through this cycle. I’m truly hoping that the cumulative effect doesn’t mean I feel awful on day 5! Only one more cycle of AC to go (yay) – and my oncologist promises that T will be better! Going out today gave me an excuse to dress up and try out the stylin’ new hat and earrings my mom sent! I am amused at how much I like to dress up when I go out now – that is so not like the old me.

We are going camping on Saturday night. We have not been camping yet this summer – which is so unlike us. Having a temporary disability permit has been a life saver for me. It has meant that I can run errands even when my energy is low, but it also means we can go camping this weekend. The California State parks set aside certain sites that can only be used by someone with a placard. So even if all the other sites are full, no one else is permitted to use them. This meant that when I was looking for a site on Monday, there was one still available for Saturday. It is a real savior to be able to go camping at the last minute, as there was no way we could have planned in advance how I would be feeling. Honestly, I’m not 100% certain I’ll actually be up for it – but I figure, if nothing else I can spend an afternoon reading a book in my camp chair surrounded by ancient trees – sounds pretty peaceful to me!

Fri August 8, 2014
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