Tag: coping

I almost didn’t go …

My proposal for a paper presentation at the Health Humanities Consortium Conference in Houston in March was accepted. When I was first accepted I was really excited about it. Then the plane tickets cost a little more than I’d like. I found myself doubting – do I really want to go? I found myself justifying all the reasons why I might not go.

It was the celiac talking. It was me trying to avoid going out because the food might make me sick. I was deciding not to go because of fear – not for any really good reason.

Yes, I’m nervous about the travel – air travel makes me anxious. I used to love it, now I worry that I’ll starve, and end up packing so much food that all I do is eat my way through the flight.

I worry that I’ll be hungry during the conference. I even asked the conference organizer about food – which they haven’t planned yet. I got an awesome reply. They said they’d try – I cannot really ask for more.

Once I realized the reason my waffling was fear talking, I decided to push through. I booked my flights, hotel, and registered for the conference. I’m committed now.

I haven’t been sick since July. That is six months without accidentally consuming gluten. My blood anti-body levels are back to normal. From a celiac perspective, I am healthy.

I have also tried to get past my fears on a local level. The other day I went out for fish tacos at my favourite local taco place. I only had one thing – fish tacos. I figured that if I tried anything else and got sick I wouldn’t know what made me sick. Next time I’ll try the carnitas (pulled pork) tacos. If I get sick then I know I need to stick to fish. I find that I need to take this one step at a time.

I’ve also learned that if I’m going to branch out and try something – I might as well try a lot of it and really enjoy it. You see – if something is going to make me sick it doesn’t matter how much I eat. The level of sickness I experience is no different between a quarter teaspoon of flour and two cups of flour, so if something is going to make me sick I might as well get the most of it and really enjoy it – as it will likely be the last time I try it.

Of course, now that I’ve decided to go the conference, I need to figure out my presentation. I’m working on my research now. I won’t get a huge amount of time to talk – so my presentation will need to be short and focused. I realize now that my past presentations have been a bit scattered – they have included snippets that were not relevant to the message – they may have been relevant to me personally, but they were not relevant to the overall storyline or the message I was trying to send. So now, I’m trying to figure out – what will be the theme for my short presentation?

Feature image CC0 via Pexels.

Tue January 17, 2017
Nothing quite feels like you expect it

One of my fears has been regarding neuropathy. It is a common side effect for the Paclitaxol (aka T-Chemo) which I start on Labour Day (September 1st). It is also a less common side effect for AC chemo. It seems that I’m destined to experience it now!

It all started this morning, with some tingling in my feet. I noticed that the front pads of my feet were a bit tingly (sort of like they were about to fall asleep but had not yet). Unfortunately, it didn’t get any better, and now I’m finding it a bit painful to walk – I can feel myself compensating for the tingly (which is less tingly and more like fine needles stuck into my feet). I only seem to notice it when I’m standing / walking – so it doesn’t bother me at all when I’m sitting or laying down (which is good). It may seem counter-intuitive, but the more I walk, the less painful it is (it isn’t really that painful, rather it is annoying).

So, now I’m going to put on my running shoes and go out for a walk – in hopes that getting the blood flowing to my feet through walking will make the problem go away.

Sat August 23, 2014
The mixed blessings of support groups

I have found that support groups are a mixed blessing. I have been going to two face-to-face groups, but also have ‘connected’ support groups on Facebook. The face-to-face and online groups provide different kinds of support, and I find that I need both.

The online groups provide day-to-day support and often give me quick answers to questions. These are not necessarily the answers to the types of questions you get from your doctors, but rather more real-life suggestions that make it easier to deal with the unknown and help better prepare for what is to come. For example, it never would have occurred to me to rent a hospital bed for a month, to make sleeping after surgery easier. Many people sleep in loungers, and others use wedge pillows. The general problem is that for the first few days after surgery, the ability to sleep horizontal is a challenge. I found this an issue with my port, so I anticipate it to be worse with surgery. So, now we are looking into renting a fully electric hospital bed for a month – which is truly the best of all worlds – they deliver and pick-up, and insurance might actually cover at least part of the cost. It is a much better solution than a lounger (which we don’t need), and will be cheaper too.

I’ve gone to two face-to-face groups, one for those who are newly diagnosed and in treatment, and another for young people with breast cancer. As I’m an extrovert and know very few people in the area, it is a challenge for me to get enough face-time with real people. So, face-to-face support groups give me energy – they feed me. However, timing is a challenge. The groups meet either Saturday afternoon or a weekday evening. The Saturday afternoon is often better, but as we have discovered camping to be a blessing, we shall try to do more of it, making me miss Saturday afternoon groups. Evening groups are a challenge (at least while on AC chemo) as I cannot drive home afterwards – so I need someone to come and sit for two hours (or longer) while I am in group, as I cannot guarantee that I will be able to drive home afterwards. The other challenge with the evening groups is that being around people gives me energy – then I have a hard time winding down and sleeping afterwards. Given that since chemo I have typically been in bed around 9 – 9:30, groups that often run past 9:30 and are a half hour drive home, making the drive and sleeping difficult.

Then there is the group itself. In the newly diagnosed and in-treatment group, I’m often the youngest person there. I have a young person cancer, so I often have one of the more aggressive stories (although not always – we have lots of rareness in our group). More interestingly, I can relate to the older women better on a professional level, as many of them are self-employed or professionals.

The young cancer group is full of inspiring women, but their challenges are different and they often have more aggressive cancers. It is difficult to hear women with metastatic disease speak of their journeys as they learn to accept and not fear death and those with aggressive cancers whose prognosis is in the ‘single digits’. This is much more the case with young women with breast cancer, as young cancers tend to be more aggressive in nature. I’m also one of the oldest people in the group – as I sit at that boundary. Young breast cancer is considered “under 45”, and I’m 43. So I am definitely at the edge. I’m also in a very different place professionally. Given that this is the group that meets in the evening, I find it especially difficult. Last night I came home charged with energy from being around people, but also struggling with depression as the reality of my journey sinks in (I’m thankful I’ll be seeing the cancer psychiatrist tomorrow).

With this, I’ve come to a difficult decision not to attend the face-to-face young persons groups anymore (at least not for the time being). Although there are many encouraging women in the group, it does not leave me with the feelings I need. It may be doing me more harm than good. I will stay connected with the women through the Facebook group, as I find it a good virtual group, but the face-to-face is just too challenging (it is also the group that meets in the evenings and often runs overtime, so it is too logistically and physically demanding for me at the moment).

I will make every effort I can to make the Saturday afternoon group. It has been a very supportive group. It is smaller, and rarely runs overtime. Since the group is smaller, we have more time to share and more time to ask questions, so it provides better support for me. I come home from the group feeling energized and generally in a better spirits. So, it is the group that is feeding what I need and not what I don’t. I’m also hoping we can get a Facebook group going, as I’d love the opportunity to connect with these women more outside of the 90-minutes once per week that we meet.

Thu August 14, 2014
Wondering why?

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 🙂

Wed August 13, 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.
$DCIM\100GOPRO$

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!

$DCIM\100GOPRO$

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
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