BC Becky

Never thought I'd want to be a breast cancer survivor

Year: 2015

  • Sometimes you need to say the good words too …

    When doctors are taught to give bad news, they are told not to skirt around the issue. It is important to come right out and say it. The words matter.

    What I don’t think they are told is that the good words matter too. Part of my struggle has been that the doctors don’t seem to come out and say the words – You are cancer free or your are NED (no evidence of disease). They say things like you are doing fine, come back and see me in 3-months or 6-months. But sometimes, we as patients, just need to hear the words. None of this implying them, but not actually saying them. We need our doctors to say the words, cause the words matter.

  • Changes

    It is interesting how some changes just sneak up on us, and others hit us in the face.

    I’ve been thinking a lot about changes. In my cancer blogosphere, many people are annoyed at the expression/expectation that “cancer changes you”. It was something my mother-in-law said to me early on in the journey. Not so much that it necessarily makes you better or worse, just that it will forever change you. I see that.

    One way that cancer has changed me is that I find that I often ask myself am I doing what I want to be doing? I ask this question multiple times a day. I ask it whenever I’m doing a new task or a repetitive task. Further, I ask myself If I was diagnosed with mets tomorrow, would I still want to be doing this task? I know that in some ways that may sound morose, but it can also be rather liberating. If the answer to the question is no, then I need to be asking myself why I’m doing that task, and if there is a way I can make it so that I do not need to do that task again. It means that I can say ‘no’ the next time I have an opportunity for that task. It also is validating. When the answer is ‘yes’ then I know that I’m doing something that I really want to be doing. I’m focusing on something that I should be focusing on. It is a useful test that I did not have before cancer.

    Today marks 1 year from my first cancer treatment – this was me a year ago today:

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    Not really afraid, but perhaps apprehensive. I was so strong when I began chemotherapy. Just days before I rode my bike up Mount Hamilton. I was biking almost daily, and walking up to 10km.

    A year later, I’m happy to report that I’m feeling in excellent shape again. Today I got on my ‘bent and rode over to a friends place so that we could walk. Then I rode home. I found myself bursting with energy. I felt strong both on my bike and on my feet. For the first time since surgery, I could lift my legs to start/stop on my recumbent without thinking about my abdominals. It is almost like something went ‘click’ and suddenly all the post-surgery weakness went away. I expected that I would gradually feel better – I didn’t expect it to be a sudden shift from struggling to strength. Just the other day I was writing about how healing take time. It does, so I must be careful not to over do it … but I’m just so glad that I am feeling strong again.

     

  • Rashes and ouches

    After the first epic hike (Friday), we setup camp and made dinner before heading to the showers. I felt fine, but when I removed my clothing I noticed a rash on my breasts. Of course, I freaked out. I seem to be doing that a bit more lately that perhaps I should. My first thought should not be cancer! After showering, I showed Scott and his immediate comment was looks like heat rash. And of course, that made sense. It was a hot day. We hiked for 5 hours and I sweat. My new breasts don’t have lymph nodes and are prone to such things as heat rash. Because I cannot feel them, I did not notice when the rash happened.

    After the second epic hike (Saturday), we drove home stopping for dinner on the way. We hiked for almost 7 hours. Again I sweat. This time I was wearing a different sports bra – one that was perhaps a little too tight. By the time I took it off to shower, I had some pretty serious indentations and rashes in various places. Again, I did not feel anything, so I had no idea this was happening. Had I felt something, I would have adjusted the bra or perhaps even removed it!

    The plastic surgeons warn us (by us I mean those who have had reconstruction of either the flap or implant variety) not to wear underwire bras. The reason for this is because if the wire gets loose you can injure yourself, and with a lack of sensation you would not know there was a problem. I now know that this is also an issue with too tight sports bras (now I need to go shopping!). I cannot tell they are too tight or that they have seams in unwanted places. I don’t feel the problem. I only notice the issue when I finally take it off and head to the shower. This provided yet another reason to be thankful for the mirrors in our apartment – they make it easy for me to visually examine the areas I cannot see by looking down.

    Of course the next question is, do I need to wear a sports bra at all? I’m not sure. I sent an email along to my plastic surgeon to ask. It may be time for me to clean out my dresser drawers and be rid of all my old bras that I no longer need and have no desire to ever wear again. I just hate throwing perfectly good bras away – and yet, I know that I cannot donate them anywhere!

  • Acure – a product review

    I first learned of Acure products when I received a free sample in the welcome tote – given to me the first time I attended a support group session at Bay Area Cancer Connections. I had just been diagnosed with breast cancer and was preparing for chemotherapy. I loved the cell stimulating body wash so much that I bought a couple of tubes of it. It was my indulgence when I got in the shower. I used the smell to trigger an escape from all the bad stuff happening – it helped me feel pampered.

    When I was looking into monetization of blogs for the Should I blog course that I designed (see http://shouldiblog.org), I discovered that Acure offered bloggers a sample pack in exchange for providing a product review. I immediately signed up. I love that their products are all natural and vegan.

    They kindly sent me a sample of several of their products. Unfortunately, their first shipment never made it to me (the package wasn’t actually delivered). They were nice enough to send out a second package! And with that I have several products which I shall happily tell you my thoughts on – note that I delayed this post so long that they have different packaging – but the products are still amazing.
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    I have been using these products for the last three months. I was surprised at how sensitive I am to the smell of products. I loved the Argon Cell Stimulating Body Wash because I loved the smell of it. I have since shifted to the Sensitive Skin Body Wash – however, I’m not as keen on the smell of it. I’ve also tried the Sensitive Facial Cleanser – again, not too keen on the smell – if you like the smell of peonies, you may very well enjoy this face cleanser. My only objection to it is the smell.

    What was really a hit for me was the Leave-In Conditioner, and the Argan Oil (as an aside, I also like that it is sustainably purchased from a women’s cooperative in Morocco). I’m going to be ordering myself some more! The Leave-In Conditioner has a wonderful scent, and helps to control my crazy chemo fizzy hair. I use the Argan Oil on my face and sometimes on my scars. I also have some small samples of the Marula Oil. I find the Marula and Argan oils work about the same, but I prefer the smell of the Argan oil. What is especially nice about the oil is that you can use it on your face, on scars, and on your hair – meaning one less thing to pack when travelling. I love it so much that I need to order more!

    This post was sponsored in part by free samples provided by Acure. These are my unbiased opinions of the products I received. 

     

  • Epic hikes and sleeping in a tent

    When we noticed a campsite available for Big Basin for one night this long weekend we decided to go camping. It was bit of an experiment for me – to see if I could sleep in a tent. Last time I tried was our weekend at Big Sur the first week in May. That weekend, I found that I could not sleep in a tent for two nights. I was exhausted by the time we got home. So, when we went camping in the Eastern Sierra’s, we rented a van so that I didn’t need to sleep in a tent. That worked well but isn’t a good option for a quick weekend get away.

    The other reason for going up to Big Basin was to do a couple of longer hikes. In the last few weeks (since vacation), I’ve been doing more and more training for the Avon Walk – which is next weekend. It has snuck up on me! Thank-you everyone who has donated to help me be able to participate in the walk. Back in May, I had resigned myself to walking only 4 or 5 miles. Even that would be a stretch given my neuropathy. However, my Aunt (who is generously coming from Canada to walk with me) has encouraged me. She too has been training, and wants to make an attempt at the entire walk (23.8 miles/38.3 km on Saturday, 15.5 miles/24.9km on Sunday).

    In order for me to walk more than 4-5 miles, I have stepped up my training. Last week I hiked 6.78 km at Alum Rock park and did a 10km walk along the Guadalupe trail.

    I decided (crazy me) that I was ready to step up my game and go for a 10 mile hike! It felt a little contradictory to be signing into an ADA campsite (California State Parks have campsites that can only be used by people with ADA placards, that is, handicapped permits), and then asking the ranger for recommendations for a 10-mile hike. And more so, it being 2pm and us planning on going for 10-mile hike that day!  The park itself was a complete zoo. There were warnings on the way up that the day use area was full. The way the park is designed, when that area gets full it backs up the ‘highway’ that runs through the park, making it more difficult for anyone to get anywhere. We were lucky enough to find a place to park for long enough to register – then parked at our campsites and headed out for a hike from there.

    For our first hike, we ended up turning around a little earlier than the recommended hike – in part because we parked at our campsite, which added 2km each way to our hike. In the end, we hiked just shy of 10 miles (15.3 km). In my lifetime I can only remember two other hikes that might have been longer (Robinson Ridge in Kitimat and Fishing Cove Trail in Nova Scotia) the Internet is telling me that both were shorter!

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    Initially our thought for our second hike was that we would take it easy. My knee had been bothering me on the downhills, so we thought we could make it to the falls and then take a bit of a climb (400m/1300ft climb!) out of the falls and follow the fire road back – which in theory would be less steep. The falls turned out to be a bit further in than we had originally thought – we again found ourselves rationing our water (oops). But, we did it. 17.3 km and almost seven hours of hiking later, we were back at the campground headquarters. We were thankful that the camp store was still open, such that we could reward ourselves with an ice cream before hopping in the car for the 90-minute drive home.

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    The trail was beautiful, often passing by groves of giant redwoods.
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    Me taking a selfie!
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    Scott didn’t mention that I had almond butter on my face until well after I took the picture!
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    Our destination was Berry Creek Falls, which we are happy to report actually had water going over it! (things are pretty dry around here)
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    After the water falls, we followed the Howard King Trail, which was pretty much straight up (300m climb over 4km).
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    Which brought us to this lovely scenic overlook were we could see the ocean in the distance.
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    Today we are both a little stiff. We are going to need to go for a short walk around the market to help loosen things up a bit! Overall, I’d say we had a great weekend. I’m feeling a lot more prepared for the Avon Walk next weekend, and looking forward to visiting with my Aunt when she arrives on Wednesday!

     

     

  • It’s not cancer

    On Monday I had an MRI of my shoulder. On my trip to Ottawa in May I had noticed a lump on my shoulder. I freaked out, had a physical exam where they said it was a lipoma (fat pocket). The problem is, I kept getting tendonitis in my shoulder. Physical therapy wasn’t helping it. So, I saw an orthopedic surgeon for an assessment. He ordered an MRI.

    This was the first time I was doing an MRI that wasn’t about cancer. I was still afraid of scansiety. In many ways, the ordering of scans can cause anxiety. It is in part about the waiting for results, and the worry of the results. But even more, it is about the memory of previous scans (someone else blogged about this, but I cannot find it – if you did leave a comment and I’ll link to your post).

    My point is, that when I went into the MRI, I was very aware of how I was feeling. I was aware of the possibility of anxiety – and where that might actually be coming from. I’m happy to report that I didn’t have any anxiety. Actually, the MRI was mostly a non-event. The tech didn’t do much to prepare me – perhaps because he thought I had lots of experience with MRIs already? I don’t know, but I think he would have forgotten to give me ear plugs had I not asked for them! The MRI took about 25 minutes … after the first two scans (about 2 minutes each) I actually fell asleep – yup – I took a nap during all the whirring, clicking, and banging …

    The tech said the doctor would be able to read the scans immediately. The next morning, I sent off an email to the doctor asking for a short summary of the results. I needed to hear that it wasn’t cancer – part of me was thinking that cancer had spread everywhere – so I wanted to know. I’m happy to report that it is not cancer … yup, now I have a scan that confirms it. I do, however, have a tear in the labrum. In a couple of weeks, I have a follow-up appointment with the orthopedic surgeon to talk about how one might treat this. Most importantly, it is not cancer!

  • Transitions, #avon39, and the Peak Hike.

    In any long journey, transitions matter. Back in August last year, I wrote about the importance of transitions – transitions help mark our waypoints along the journey, but they also give us something to celebrate. A sense that something is finished a new thing is beginning. A way to start things anew.

    Shortly after writing the post Transition Matter, I signed up to do the San Francisco Avon Walk. I had planned on the Avon Walk as being a major transition in my cancer journey. It was to represent the completion of treatment and the journey into living beyond breast cancer. In many ways, a bridging ceremony.

    Little did I know just how far down breast cancer treatment would bring me, and how long it would take for me to climb back out of it. The Avon Walk has helped give me a focal point for my exercise. It has helped to inspire me to walk further and longer than I otherwise would have. It is encouraging me to push myself. That is a good thing.

    I no longer see the Avon Walk as a major transition. This is in part because I do not see myself mysteriously getting better just by walking through the arches at the end of the walk. I know that I still have a long way to go. But I am encouraged. Four weeks ago I thought I’d be lucky to walk 4-miles. I did a 6.2 mile training walk yesterday. There is hope yet that I’ll be able to walk a large portion of it – even if it isn’t the entire 39, it is quite significant. I’m come a long way and that is worth celebrating.

    Today I also signed us up for the Peak Hike. The Peak Hike was the last big walk/hike I did before the Taxol chemo took away my ability to walk. It was monumental for me – hiking further than I had before – bald and fighting off the cognitive fog and physical neuropathy caused by the chemo. I’m a little bit amazed that I managed it.
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    This year is the 20th year of the Peak Hike. We are part of a team – Em the Gem – who have being doing the hike since it began. The team captain has become a friend and was one of my many walking buddies. The ‘honer family’ have helped me with rides to chemo and provided us with dinners after my surgery. We are honered to be part of the family 🙂 …

    The Peak Hike will be an interesting transition for me. It will happened at almost the one year post chemo mark. This is the point where we start to figure out what neuropathy is permanent. It represents a reset in the expectations – at this point the expectation is that the neuropathy will go away – we’ll see. Looking at it now, I’ll be happy if I can make the 7 mile hike. It will be just as momentous this year as it was last, only this time I’ll have hair – so my struggles will not be so obvious to those around me.

    The Breast Cancer Fund looks at research and works towards changing public policies and educating people about things that might lead to breast cancer. They are focused on prevention rather than treatment after the fact.

    If you’d like to contribute to our fundraising for the Peak Hike, you can use these links – Thank-you!

  • Healing takes time

    As frustrating as it may be, the reality is that healing takes time … and lots of it … calendar time … it isn’t something that you can speed up no matter how much you will it to.

    People will often ask me how my neuropathy is. At the moment, it is mostly just painful. I’m looking to that as encouragement – as in, the nerves are re-growing, so it hurts. At this point in time there is nothing they can or will do for it. I take some meds that in theory help to manage the pain. That is about it. Time must pass, and as it does things slowly heal.

    Once a year has passed (end of October), then my neuropathy will be re-assessed. It is at that point (or maybe even 18 months) that we start talking about what is permanent versus the transient pain associated with recovery. As much as I might wish to will it to get better, the reality is, that the only thing that will make it better is time. No amount of physiotherapy, ultrasound, acupuncture, etc, will make the nerves grow back any faster – although those treatments may help temporarily manage the pain – the only thing that will fix the real problem is time. And so, I must learn to be patient and wait.

    When I think about time and healing, I am reminded about just how far I’ve come. I think of my various walking buddies and how they must see the remarkable differences. Back in December, after my surgery (so Christmas), I could barely walk around the complex. I remember going on 5 or 10 minute walks within the interior courtyard with my mother-in-law. Not exactly our usual Christmas afternoon turkey in the oven walks.

    Eventually I graduated to walks out to the pathway behind our house. Even then, I’d walk for 10-15 minutes – very slowly – and then need to sit on the bench. I knew where all the benches were – I created a walking route so that I could stop and sit at each bench as I needed to. So, I must say, that I have come a long way. Yesterday I walked 10km (6.2 miles for the metric challenged). It took me two hours. I didn’t stop to sit down even once.
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    My parents last saw me in person after my first surgery (American Thanksgiving). I wasn’t quite at my lowest at that point, but I was still in pretty rough shape. Chemo had taken a lot out of me and my neuropathy was pretty darn bad. I’m looking forward to seeing them in a couple of weeks – so that they can see just how far I’ve come.

    As so, I remind myself regularly. Healing takes time. I’ve come a long way, but I also have a long way to go. As much as I want to be back to the super fit me that I was before cancer (or at least that is how I remember myself – the reality of that may also be a bit of a myth that I tell myself), I need to remember healing takes time. It isn’t something that can be rushed.

  • Perspectives

    Sometimes, when you are living it, you focus on one perspective and miss everything else around it. Sometimes all it takes is a friend to make a comment that helps you re-see the issue from a different perspective.

    The theory behind cognitive behavioural therapy is that you can change how you feel by changing how you think. For me, this matters, because I will find myself feeling down or thinking about worst case scenarios – catastrophizing. Worrying. And sometimes, it takes the help of a friend or family member to change the perspective.

    On June 17th, I celebrated 6-months cancer free (woo-hoo). But with this came worry. I saw a graph once about recurrence rates, and it had a bump at 6-months and a bump at 5-years. I think this happens in part because 6-months and 5-years align with doctors visits. It isn’t that it is 6-months post treatment – it is 6-months after my last visit. Anyways, that timing is coming upon me soon. I found myself worrying because no one I know has had a recurrence after I met them. That is – I know people who have had recurrence or worse progression, but they were diagnosed with this before I met them.

    As an aside – progression is a term I’m becoming more familiar with and one that I haven’t used on this blog before so people might not be familiar with it. The term recurrence is usually used when you have a local recurrence of the disease. This is when the disease is found again in the same area. A local recurrence may happen if a new tumor appears on the chest wall or in the opposite breast (not that common). But progression is when the disease spreads – it typically means that you went from an early stage to metastasis (stage 4) or if you have already been diagnosed stage 4 it means the cancer is growing again.

    So I don’t know anyone who was diagnosed at the same time as me who have had a recurrence or progression. I know that statically, this means that someone will .. and sometime soon .. and this worries me. I mentioned it to hubby and he immediately put a different perspective on things .. he said, no one has and maybe no one will .. that it is a good thing that no one has .. it made me think that I need to change how I think. I should be celebrating that no one has, rather than worrying that someone might. It may sound like a little thing, but it is actually a huge shift in perspective – and that shift helps me clear some of the fog that is my current brain …

     

  • Mirror Mirror on the wall

    One thing about California – the closet sliding doors are often made of full length mirrors. This means that every day, after my shower, as I walk passed the closet to the bedroom, I see naked self in the mirror.

    In many ways, this has helped me heal. It has helped me see myself – my scars – and accept them. My breast surgeon and plastic surgeon both did a remarkable job. Sure, my body isn’t perfect (no ones is), but I’m pretty happy with the outcome.

    I do think looking in the mirror every day helps. It helps me accept my body. It is also a constant reminder – so are all the pills I take at 9am and 9pm each day. I am hoping that one day, I will internalize all this change – and it won’t be something that I think about – that the scars will not be a reminder, but rather will just be me. Someday. Just not yet … I’m not there yet. For now, I’ll choose to be happy with the body that I have, and try to accept what has happened and move forward.

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