BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Category: recovery

  • 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.

  • This little light of mine

    This little light of mine, I’m gonna let it shine
    This little light of mine, I’m gonna let it shine
    This little light of mine, I’m gonna let it shine
    let it shine, let it shine, let it shine

    Ain’t gonna let cancer blow it out, I’m gonna let it shine …
    Even if my hair falls out, I’m gonna let it shine …

    This great big light of mine, I’m gonna let it shine
    Let it shine, let it shine, let it shine

    Now, every time I hear that song, it will bring tears to my eyes. We sang it several different times over the weekend, and cried every time we got to the second verse. Even now as I type it, my eyes begin to water.

    Over the weekend, it was the one song that everyone seem to be able to sing along to. We sang verses that related to the cancer journey, rather than ones that were overtly Christian, so those in at the retreat who did not identify as Christian could still sing along.

    The song also reminds me of a sermon by one of our (at the time) intern ministers at the First Unitarian Congregation of Ottawa. Every time I hear the song, I think of Laila and her aversion to the ‘let it shine’ as she didn’t want to broadcast her light. She would rather choose to not ‘let it shine’ – that is what I remember about it.

    Either way, I love the song. I love the tune, and the energy of it – but it will now bring tears to my eyes. It will forever remind me of fly fishing in Northern California – but more importantly, of all the amazing strong and compassionate women that made the retreat so meaningful. They are good tears, but tears none the less.

  • 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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  • Coping with abundance

    Coping with abundance. In this case, it is an abundance of things to do and not nearly enough hours in the day to get them done.

    When I first was diagnosed, the answers became clear. I prioritized exercise over everything else. I only worked on projects that I enjoyed doing. I let everything else drop. I gave away contract work – my lack of focus on such things meant that I would not be able to complete things.

    Now, I’m starting to undig myself from the hole in which I am in. In some ways, it is like being encased in an egg shell that is the disease. As I am being reborn, I crack open different parts of the shell – and with each crack a whole wave of new information flows my way. New opportunities, and new things to compete with my limited time – An over abundance of things.

    I am happy to report that I did successfully break through the procrastination yesterday. I started on one of the contract projects – however I ran into technical issue that stumped me for the rest of the day (and even stumped hubby – so I don’t feel so bad about it now).

    I watch as interesting things cross my social media streams. So many new MOOCs (#rhizo15, #GoogleOnAir, …)  that seem interesting and would be great to participate in. I’d also love to have the time to learn more about mobile application development. I am looking inward at myself and trying to figure out where I have been successful in the past, what I enjoy doing regardless of my level of success, where I want to go in the future, and how those two things could possibly intersect. I’m trying to not spend too much time on things that don’t really work for me, things where I feel like my contributions are not valued. I want to avoid the banging my head against a wall feeling … and yet, if I don’t push myself to try some of these new things, if I don’t allow myself to sometimes fail, then I will not grow … and I will not find the opportunities that do work. With success comes the willingness to fail …

    So, I’m now trying to figure out how I navigate through this abundance without feeling like I’m aways behind. How I can live in the moment, and be productive, and still have the time for the things my body needs. Exercise is still my priority (or at least it will be when this cold finally goes away – it is loosening its grasp on me so I anticipate that by next week I shall be free of it). I need to get my body strong so that I have more endurance for getting the activities done that require mental focus. For now, I’m dealing with the abundance in triage mode – what must be done today versus what can wait until Monday.

    Tomorrow, we head up to Northern California for the Casting For Recovery retreat. I say we, because hubby is driving with me, but he isn’t invited to the retreat. His plan was to camp, but they just snow up there! So, we are in for a cold weekend retreat. In some ways, that will feel nice – we missed winter this year (sorry to all my Canadian and East coast friends who are still buried in it). I am both looking forward to and apprehensive about the retreat. I hope that it is a healing weekend, rather than one that opens wounds. Crossing fingers.

  • 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!).

  • The Emperor of All Maladies – Episode 2 – hitting close to home #cancerfilm

    This morning I watched the second episode of Cancer: The Emperor of All Maladies. This episode struck closer to home, as one of the main characters – Laurie – had bilateral breast cancer (although much more aggressive than mine). She had similar treatments – neo-adjuvant chemotherapy and a bilateral mastectomy. At the end of the episode, she talks about the pervasive haunting that is fear of recurrence. I’m glad I was able to watch it this morning. I watched the first episode later in the day yesterday, and it haunted my dreams for the first part of the night. Hopefully a morning viewing will give my brain all day to process, so that I am not bothered in my sleep.

    I found it interesting to learn more about the history of breast cancer research – but also about how some of the different cancers are related.  One of the things I do find a little frustrating with the film is that it keeps jumping back-and-forth in time. One minute you are in the 90s the next you are back in the 80s. It makes it hard to determine which innovations helped influence other innovations.

    I didn’t know about the protests at Genentech. Learning about these things when you live in the area makes it that much more real. In some ways, I feel bad for not having cared at all about cancer (or breast cancer) when I was younger. It was never on my radar. In episode 2, they talk about 1 in 13 women … that statistic has now changed to 1 in 8 … but that is in part because women are living longer (someone in my blog network did an excellent post on this, but alas, I cannot find it – if you remember, please send me a link and I’ll put it here). I think about how far we have come in our protocols for clinical trials – and how some of the protocols needed for good science still cost lives. I also think about how much of a role privilege plays in gaining access to clinical trials.

    I recall when I was first diagnosed that there was potential for me to be in a clinical trial – but alas, I did not qualify because I had bilateral disease – which meant I had multiple cancers. My participation would skew the results. In some ways I find myself constantly questioning – does this mean that I missed my chance at long term survival? What that clinical trial the one that would save me? Of course that is crazy thinking. Part of what haunts me is that two of my three cancers didn’t respond that well to chemotherapy. They didn’t grow, but they didn’t shrink either. I didn’t have the same amazing result that Laurie did. I had a pretty mixed result – with my primary tumor responding very well to chemo and the other two no so much. The reality is that as far as we know now, the current treatment that I received did what it needed to do. My prognosis is good. But alas, as with Laurie in the documentary, I am haunted by thoughts of recurrence … I’m just getting better and better at coping.

  • The Emperor of All Maladies and clinical trials – #cancerfilm

    I am glad to have learned that the PBS mini-series Cancer: The Emperor of All Maladies (based on the book – The Emperor of All Maladies: A Biography of Cancer) – is available to watch at http://cancerfilms.org/media-gallery/?media=cancer-the-emperor-of-all-maladies—episode-

    I wasn’t certain that I would want to watch it. I had learned about the book when I was first diagnosed, but the whole idea of reading about cancer was overwhelming. As it is, I cannot read about cancer too near to bed-time, otherwise I have difficulty sleeping. So, it was with trepidation that I clicked the link and started watching. Several of my blogger friends have commented on their inability or ability to watch the mini-series. As a survivor, it cannot be viewed without some emotion.

    I really enjoyed the first episode. It is facilitating to learn not just about the disease itself, but also about how clinical trials were first established. Throughout the first episode, I found myself listening and trying to figure out how this or that innovation led to the treatment that I received. It helped me better appreciate the role of surgery as a first line of defense in some cancer treatment. As I watched, I found that I was a bit sad about not being able to participate in clinical trials. The bilateral nature of my disease excluded me from the only trial that qualified for. I have read through various blogs that many breast cancer clinical trials fail to find enough participants (although I haven’t been able to find a good reference for that fact – if any of my readers have a good source, please let me know). At the time of diagnosis, I was more interested in getting into treatment quickly, then I was at finding a clinical trial. It is one aspect of diagnosis that is quite odd really – before I had cancer, I had not even considered clinical trials.

    When I was first trying to decide on which chemotherapy regime to take – my oncologist gave me two choices – AC-T (A-Adriamycin, C-Cytoxan, T-Taxol) or TC (Taxotere and Cytoxan) – I made my choice based upon the side effects of the two regimes, but also based upon what I understood to be the standard of care in Canada – because I’m Canadian, and it was something I could trust. What I didn’t understand at the time, was that the AC-T treatment was an older treatment than the TC treatment. This meant that a lot more is known about the AC-T regime – however, it doesn’t mean that the regime is better – just that it has been around longer and therefore more is known about the longer term side effects. It is always going to be the case that the older regime is going to be better understood, because it will have been studied for longer. It doesn’t necessarily mean that it is better (or worse) than the alternate regime. There is a nuisance there that I didn’t completely appreciate when I made my decision. I might have given TC more of a thought had I appreciated that because it was newer, less is published about it. That being said, the potential side effects for TC were things that I knew my body was both prone to, but also things that my body would have a harder time coping with – so the decision for AC-T was the right one for me. I also do wondering about my decision for neo-adjuvant chemotherapy. Again this is an area where the standard of practice is changing – there is not nearly as much written about it as there is adjuvant chemotherapy. In some ways, I am sad that I’m not directly part of a study that looks at the long term effectiveness of neo-adjuvant chemotherapy as opposed to adjuvant chemo.

    Watching the first episode has me wanting to go out in search of clinical trials – if for no other reason, then to validate that I don’t actually qualify for any right now. On one hand, it would be great to be part of new treatments which have such promise, but on the other hand, an unknown drug with unknown side effects isn’t exactly something I feel I can deal with right now. I have participated in a couple of studies that involve me giving my blood for the sake of science. For me, those are easy trials to agree to. I can spare a couple of vials of blood now and then – and if my blood can help further breast cancer research, then I’m happy to comply.

    I’m looking forward to Episode 2 of Cancer: The Emperor of All Maladies.

     

  • Feeling a little embarrassed … definitely relieved

    The fear of recurrence is ever present, and yet I’m feeling like I can begin to let go of that worry.

    I saw my oncologist today about a headache and other pains. They had me scared. The oncologist did some tests and confirmed that is was nothing to worry about – that I should follow up with my ophthalmologist/optometrist as I definitely am in need of new glasses. One of the side effects of tamoxifen is vision changes, but that is typically vision changes due to cataracts, not refraction changes. Chemotherapy can also affect the moisture in your lenses. Since I had cataract surgery before I had cancer, my lenses are already implants. So vision changes are not necessarily directly attributable to cancer treatment. Either way, I’m not seeing road signs clearly even with glasses on, so it is time to go get my vision checked – and once I get new glasses, I’ll need to book my drivers road test so I can finally get my California drivers license!

    I feel a little embarrassed. I went through waves of convincing myself that I had mets (metastatic disease) … I know I need to stop doing that. I find that I need the appeal to authority to help me stop the negative thinking, to move beyond it. This time, however, my oncology appointed ended better than my last. I don’t feel nearly as abandoned – more I feel supported – which is in part what I needed.

    I’m doing some cognitive behavioural therapy (CBT) – when I first heard someone use the acronym, I got confused thinking they were talking about “Computer based training” – Cognitive Based Therapy uses the premise that you can change the way you feel by changing the way you think. I’m working through it with a good book (recommended by my therapist) – When Panic Attacks: The New, Drug-Free Anxiety Therapy That Can Change Your Life – So far, it is really helping. That’s a good thing. I’m finding that I can apply some of the techniques to other aspects of my life (e.g. Impostor syndrome) so that is good too.

    And so, my oncologist encouraged me to get on with my life. He also wants me to exercise more – which is amusing – the only reason I’m not is because I was told by my plastic surgeon to take it easy – so I’m easing back into exercise. I went out for a short (10km – 1hr) ride on the trike yesterday. I’m certainly weak – but today I’m feeling stronger than yesterday – so that is good. Tomorrow I may try a short ride on my foldie. Recovery involves taking one step at a time, even when you really just want to take one giant leap!

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