BC Becky

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

Category: Navigating the new me

  • Sailing…

    We went sailing this morning for the first time since October. The last bouts of chemo and then surgery meant that I wasn’t in any physical shape to go out on the boat. Today was the first time that I felt strong enough. I was able to take care of myself on the boat, but my experiment with grinding was a complete failure – I had to let go so that I didn’t hurt myself. My shoulders are still a bit sore from overuse as I spent some time with my arm hooked over the railing (probably not the best idea).

    At one point, one of the crew members went up the mast to check out how the sail was doing. The weather was perfect for it – we were on a long upwind leg that brought us almost all the way to the Golden Gate bridge and the water was pretty flat because the tide was flooding. He took a great photo – I’m the one second from the back of the boat with the white hat looking up. Scott is behind me getting his phone ready to take a photo. The mast is 11 stories high!

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    And this is what it looked like from inside the boat:

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    Here is our requisite selfie with the Golden Gate Bridge in the background:

     

    It was a fun morning sail. Hopefully we’ll find the time to get out for a few more soon 🙂

     

  • Some pictures and getting back in the pool

    Over the last week I’ve been trying to get back to multi-sport exercise. I’m not walking as much as perhaps I should be (in preparation for the Avon Walk for Breast Cancer – Fundraising is ALMOST DONE – if you haven’t yet, I’d appreciate a donation – http://info.avonfoundation.org/site/TR?team_id=141489&fr_id=2404&pg=team).

    I was doing some walking on Friday at Stanford. I stopped by my tree and took this fun photo from a different angle (from this angle you can see the redish shimmer in my hair):
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    I’ve been back on my bike – both the recumbent and the road bike. I haven’t tried the foldie yet because it puts more strain on my arms. It appears that something very yellow is in bloom in the Alviso, which I thought was rather pretty, so I stopped to take a photo:

    When I bike, I get a chance to check in on how the white egrets are doing. Yesterday I saw a juvenile male and female. I also saw a grey egret – which is more rare, but also harder to spot as they blend into the surroundings a lot more.

    I’ve been in the pool a couple of times now. I am able to do front crawl very slowly (allowing me to concentrate on form), but not very much – the last time I managed a whole three laps! It will be a while before I get strength back in my shoulders. I am completely unable to do breast stroke – which used to be my fall back stroke that I could do no matter how tired I was. This concerns me a bit – it means that I won’t be comfortable in deep water until I know I can use my arms in the pool. Fortunately our pool is only 4 feet deep at the deep end.

  • Getting stronger every day

    I am slowly, but surely, getting stronger every day. I’m starting to move beyond being a cancer patient. In addition to my various therapies (physiotherapy, psychotherapy, strength training), I’m also getting back to work. I’m re-engaging in some of my contract work activities.

    One of the things people in cancerland talk about are the reminders of the disease. Usually, this is related to ones new relationship with their body. After mastectomy, every time you look in the mirror you see something different – for some people it is a constant reminder of the disease. For me, looking in the mirror doesn’t have that effect. It doesn’t have that power over me. I don’t have a problem looking in the mirror.

    However, every morning and every evening, I need to take pills. The pill box itself has that power over me. I am reminded every time I have to take a series of pills, that my body is broken. I think I will feel this way until I can stop taking at least some of the pills (pills for depression and neuropathy/nerve pains are the first two I hope to stop). I’ll be taking something to help prevent a cancer recurrence for the next 10 years – tamoxifen or an Aromitase Inhibitor (AI). I’m OK with that. I’m OK with the pills to prevent cancer, it is the pills that signal that my body is broken that bother me. Those are the ones I want to stop taking.

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    I also got sick of looking at myself with grey hair. Mostly this is because my Twitter profile, LinkedIn profile, and all my other professional profiles have pictures of me before cancer. So the pictures are of me when I had a lot less grey and I dyed my hair. My hair was a little bit longer than it is now, but more importantly, it was darker, so it looked fuller. I got so sick of the grey hair that I went out and bought some dye (natural environmentally friendly stuff). I began with a colour that I would have chosen pre-cancer – but it came out way too red – so I added a dark brown. It now is a nice dark brown with red highlights. It is still too short, but time will fix that!

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  • Casting for Recovery

    Over the weekend I attended the Casting for Recovery retreat for breast cancer survivors. I initially mentioned the retreat and my ethical dilemma associated with it in this post:  Casting for Recovery.

    The retreat was held at a fishing lodge in Northern California (Indian Creek Lodge). We had the entire lodge booked for us. There were 14 participants and about 10 staff all staying at the lodge. Casting for Recovery is funded by the generous donations from many different local fly fishing clubs, as well as local fly fishing stores, and a few other major sponsors. In addition, a bunch of anglers volunteer to be river guides, such that when we fished on Sunday morning each participant had a personal river guide. It was a privilege to have the opportunity to learn a lot about fly fishing, but also to spend a weekend in the company of many incredible women. Most of the staff were also program alumni and fellow survivors, which made it that much more meaningful. The staff went out of their way to make sure my needs were met (my special diet but also issues with my neuropathy). I was touched by how considerate and compassionate everyone was.

    All day Saturday was spent learning about fly fishing and attending a couple of support group type meetings (one on physical aspects of breast cancer, another on emotional aspects). The support group type meetings really highlighted how lucky I am to be where I am. I have access to several different support groups, such that I can choose which groups work best for me. Many of the women didn’t have access to support groups, or the groups that they did have access to did not work well for them.

    Sunday morning we got all decked out in our gear and went fly fishing. Each participant was paired with a volunteer river guide – so we each had our own personal guide to teach us more about fly fishing, to tie on our hooks (flies), and coach us on where and how to cast. One of the ladies even caught a fish!

    During the presentation on “what fish eat” the fishing instructor talked about the spiritual connection with the fish. She emphasized the importance of taking a moment to breath in and take in your surroundings. A big part of fly fishing is just the experience of being in the river – feeling the water flowing around you – being part of the environment around you. One important thing that fly fishing does is help to monitor and support the health of river systems. In order for there to be fish to catch, the river needs to be healthy. So the fly fishing clubs help to promote and preserve the wild spaces needed for fly fishing. For the most part, fly fishing is a catch-and-release type of fishing.

    I was struck by how much more technical it was than the hook-and-bate fishing that I did growing up. When you are fishing to eat, the goal is more about catching fish. The gear is pretty simple – you don’t even need a fishing rod – all you really need is some line, a hook, and some bait (worms work nicely). It occurs to me now, that the last time I was fishing was off the back of a container ship! With fly fishing, it is more about using a variety of different techniques to catch fish. The gear is much more complex – with specialized line, leaders, and lures (known as flies). If you are just trying to catch fish, it is inefficient. However, if you want to experience the magic of being part of the river – that is much more what fly fishing is about.

    My Saturday morning selfie:
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    Learning how to cast:

    All decked out in my fly fishing gear ready to fish (it was pretty cold that morning):
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    Learning about which bugs are currently in the water (so we can chose the right fly):
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    River selfie (while my guide, Cheryl, was tying on a new fly):
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    The entire time I was fishing, I was aware of a Canada Goose that was nesting on the little island right across from our fishing hole. The picture, unfortunately, makes it look so much further away than it was. We waded out to about 20 feet from the island.
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    Although I enjoyed the opportunity to try fly fishing, and I love the magic feeling that comes with casting, I do not see myself taking up the sport. I’d so much rather fish in places that allow me to eat the fish. I cannot see myself making the investment in all the gear that is needed – although, if someone were to offer me a free weekend of guided fly fishing, I certainly would not turn it down 🙂

    After the weekend, I’m left feeling the need for a longer retreat. I need more time to process the events of this last year. I need time to clear my head, and decide where I want to put my energies. One of the things I learned about at the retreat is an organization called Commonweal – They do a week long retreat for cancer survivors and their partners – a Cancer Wellness Program. It is a weekend full of healing, yoga, and support groups, all set at a retreat center on the coast, just north of San Francisco. A couple of the women (participants) at Casting for Recovery had attended Commonweal retreats and highly recommended them. I really like that the retreats include your partners/caregivers. I am much more willing to spend a week away at a retreat center when I know that I can share that experience with my hubby – who needs it just as much (if not more) than I do. I will call them tomorrow and see when we can get in!

     

  • Fatigue and my knees

    At one point this afternoon I realized that what I was feeling might just be fatigue – rather than tiredness. I’ve been struggling with a cold all week and that has had me try to take it easy. But when I realized that what I was feeling might be fatigue, I decided that I’d go for a walk up at Alum Rock park. I was reminded of my chemo mantra – exercise helps fatigue. If you are feeling tired, go for a walk, if it gets better, you know it was fatigue and not true tired. That apparently was the case today.

    Walking down to the car, it occurred to me that my knees no longer hurt. I even tried doing some deep squats. Since mid January I have had horrible knee pain … a side effect of too much Cipro post surgery. This was rather comical (and yet sad) when I tried to pee outside the cabin when camping at Big Basin – squatting didn’t work out so well then. One of my deep seated fears has been that the pain in my knees would never get better. Anti-inflammatories would help ease the pain, but it was still present – at least until yesterday or maybe the day before. The knee pain seems to have completely gone away. I can now do a squat or two without pain (going to have to work on strength in that area now). So, I was extra delighted to go for a walk this afternoon.

    It didn’t take long for the fatigue to wear off. It felt wonderful to walk in the woods. I even did the hike up to Inspiration Point. In the end I walked 6.1 km in 1h40min – so it was not only one of the furthest walks I’ve done since chemo, it was also one of the fastest ones. I didn’t even stop to sit and rest (which I used to need to). This bodes well for the Avon Walk – which is only a couple of months away (still need a few more dollars to qualify to walk – donations welcome at this link – http://info.avonfoundation.org/site/TR?team_id=141489&fr_id=2404&pg=team).

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  • My cold still lingers on

    My cold still lingers on, although in some ways I’m feeling better. I get tired really easily – and yet I try to get out for at least a short walk each day. The walk gets me away from my computer, and gives my body a chance to stretch out and enjoy the moments of sunshine between the clouds. The weather isn’t as warm as it has been, but still rather nice. If I were feeling better I would consider getting back in the swimming pool. That is something that will have to wait until after this cold goes away. The good news in that, is that my incisions shall be well healed by the time I jump in the pool.

    Every day, either before or after my shower (or both), I look at myself in the mirror. I know many women who are not able to do that. I’m really happy with how my body looks. I see fat on my legs that I’m sure will become more trim when I can finally get back on the bike and ride – again, this cold is sidelining me. Aerobic activity is out of the question until the cough goes away. One day, I’ll find a way to share a photo on this blog. A photo of my scars but also of my new breasts – so that others can see what the type of reconstruction I had actually looks like.

    I am finding that I am remarkably more mobile. I was almost able to do a sun salutation (yoga) last night. I got as far as the plank part, where my core said ‘no chance’. I cannot support my body with my stomach/core just yet. Again, once this cold goes away, I hope to get back to the Y and the Living Strong Living Well program. They have allowed me to enroll in a second session because I could not complete the first. I’m grateful for that opportunity, as I am finding the targeted strength training to be very helpful. I was seeing some great results before my last surgery.

    As my cold lingers on, I am struggling with some emotional / intellectual demons. I find myself going down the path of think I’m never going to feel better, I’m never going to be strong again. The Cognitive Behavioural Therapy is helping me see that I’m telling myself these things. It is helping me figure out how to stop telling myself these things – to re-program how my thinking works when I’m not feeling 100%. I don’t have the answer just yet, but I’m working on it. I’m also giving myself permission to rest … but at some point, and the things on my to do list pile up even higher.

    I’ve never been one to procrastinate in the past, but I’m struggling with it now. I need to start getting back to work, but I struggle with the motivation to get it done. I use the cold as an excuse to not try.  I use chemo brain as an excuse to not try. I tell myself, maybe tomorrow, or maybe next week. It will all be better sometime in the future – but the reality is that I need to stop procrastinating and start trying again. I won’t really know what I’m capable of – or what I’m not capable of – until I try it, but part of me is afraid that if I try I will discover that I cannot do what I used to be able to do. That I will have cognitive deficits. That’s what is really scaring me. And not trying, procrastinating, means I won’t have to find out that I cannot do what I used to be able to do.

    Time is also needed to heal these wounds. I may be finished with treatment and surgery, but I have not healed from those assaults. The neuropathy in my feet is still a significant problem – but I’m feeling changes – I can feel blood flood to my feet (I can feel the swish of my heartbeats). This is a new sensation (very odd). I’ve told that we will not know the extent of my recovery (or damage) for at least another 6-months. Neuropathy can take 18-months post surgery to heal. The cognitive deficits associated with chemotherapy are even less well understood. I’ve learned from various social networks that people start to really get back to their ‘normal’ after about a year. So, right now, I can expect that I will struggle with some things – but that I can hope that as time goes by it will get better. I will regain most of what I had before treatment. It just takes time.

    So, this afternoon, I will try to get some contract work done. I will try to do some of the more technical stuff I used to do with ease. I know that once I get started, I will enjoy doing it, but getting over the initial inertia is hard. I need a push (or maybe another cup of coffee!).

  • I have a cold

    I have a cold. This is the first full blown in my chest, sinus full of cotton balls, cold I’ve had in a long time. In many ways I’m lucky. I’m lucky that I managed to get through chemotherapy and my surgeries without getting sick. If I had this cold during chemotherapy it would have been horrible, and may very well have led to a hospital visit. Fortunately, that did not happen. In some ways, I think my body knew that it couldn’t afford to get sick then, and suddenly, it can now.

    Interestingly, my anxiety levels are way down. This cold feels like a familiar cold. It doesn’t have feelings that remind me of cancer treatment or metastatic disease. The only fear I have with this cold is that I’ll get it every time I try to exercise, or that it will linger on-and-on preventing me from getting back on the bike or back in the pool (this has the effect of making my depression scores higher). Next weekend is Casting for Recovery – the fly fishing retreat that I was selected to participate in. I do not want to be sick for it!

    And so, I’m trying to take it easy. I’m mostly reading and watching TV. I’m trying to drink lots of warm herbal tea. I’ll try and get out for a walk later today if it isn’t raining (yes, it is forecast to actually rain here for the next 3-days). It’s a little cooler outside than it has been lately. This morning, I didn’t go to the market because it was only 12 degrees C outside. I’ve become a wimp, but I’m using the cold as an excuse. I don’t need to go out in the cold or the wet. I need to feel better.

  • Recent moods

    I am highly aware that my most recent blog posts have all seems rather depressing – or at least that is what I’m sensing. I want to say that I’m not really doing that badly. I’m struggling emotionally, and every physical ill (I have a cold now) amplifies the emotional struggles – but I’m doing OK.

    I have taken a new mantra from the book When Panic Attacks: The New, Drug-Free Anxiety Therapy That Can Change Your Life … specifically, “when you change the way you think, you can change the way you feel” … I actually turn it around. When I’m feeling anxious or sad, I remind myself that I have the power to change the way I am thinking, which in-turn, will change the way I am feeling. Most of the time this actually works. It does help me feel better.

    I’ve had a headache for a while, which seems to keep coming back. That had me really worried. I’ve also noticed that I’m not seeing particularly well with my glasses. My oncologist thinks the headaches are most likely caused by not seeing well – that is, the root cause is poor vision, which can be fixed by getting new glasses. After an emotional breakdown over not being able to get an optometrist appointment at my normal eye clinic (a bit of an overreaction on my part), I saw a doctor at Costco yesterday and my new glasses are on order. Hopefully the new glasses will resolve the headache issue.

    I am also struggling a bit with how I am physically feeling. Recovery from this last surgery has been quicker than previous, but it is still slower than I want it to be. It seems that when I try to get out and do more exercise, I end up with a cold. I’m not liking that pattern. It may also just be that my body is finally allowing the colds to happen. Thankfully, I managed to avoid colds and fevers while I was on chemotherapy and while I was preparing for my big surgery. Now that my body isn’t fighting so much to recover from those traumas, it seems that it is allowing itself to get colds – which slow me down. And so, today, being my mental health day is also a physical health day. Today my exercise will be a meandering walk over to the grocery store and back – and other than that, I’ll sit and read and watch TV … maybe if I’m feeling up for it, I might make another batch of raw chocolate (yum).

     

  • Learned something about my new breasts today …

    I had my post surgery follow up with my plastic surgeon today. All is healing well. Next follow up in three months or so just to check that things are healing well. She did say that I needed to take it easy for the first three weeks after surgery (so another week and a half), and that I should slowly add each sport and see how it goes. She so doesn’t know me … anyways, it will be a challenge, but I shall do my best to take it easy for another week (no biking, no gym, no swimming) – I think I can achieve the latter two, but biking might end up back on the table sometime mid next week. I did get full clearance to return to my range-of-motion exercises (which is more like yoga and gentle exercise).

    I had been told a while back that I should not be looking for “lumps” in my new breasts. That I no longer have breast tissue, so I need not worry about lumps. So, I asked my plastic surgeon about the hard spots at the bottom of my breasts (both can be quite firm). She pointed out that I no longer have lymph nodes in my breasts (my pathology reported that two nodes were removed from each breast as part of the mastectomy – all nodes were clear of cancer). The flap tissue does not have lymph nodes. The tissue left after the mastectomy can swell and fluid can pool because there are no lymph nodes to encourage drainage. If I spend most of my day upright (and I do), then the bottom of my breasts can feel hard (this is especially the case when I lay down). To help soften them I can do some massage to encourage lymph drainage – massaging towards the center chest wall. If the skin, when pinched, looks like an orange peel, that is mastectomy skin and the firmness can be quickly massaged away.  Once I tried it, I saw was surprised that it only took like a minute or two to make things much softer. Why, oh why, did someone not tell me this sooner?

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