BC Becky

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

Category: Emotional Journey

  • When do I get to say, I had breast cancer?

    So I did it. Yesterday, on my birthday of all days, I started taking tamoxifen. This is a medication that blocks your body’s production of estrogen – which is what was feeding my cancer. It is interesting, as the information package talks about how the medication is used to treat breast cancer. It is used to significantly decrease the likelihood of recurrence – mostly used in pre-menopausal women who had hormone positive cancer. After menopause, the drug group of choice are known as Aromatise inhibitors (AIs). It is expected that after a couple of years on tamoxifen, that I’ll be switched over to AIs as they may be more effective. It is a bit of a game of side effects – not sure which is better or worse.

    I was struggling with the idea of tamoxifen until just the other day. My mother-in-law has been trying to convince me for months that tamoxifen isn’t evil, it is not bad, it is nothing like chemotherapy or surgery – rather just something you do. It is something that works for you, to help keep the cancer from returning. But then she said something that worked for me – it works on your body in mostly the same ways hormonal birth control does. I had no trouble taking hormonal birth control, so why should I have difficulty with tamoxifen? For me, that worked. It is interesting the things that stick and the things that don’t. I know for many women, tamoxifen has had negative side effects, but so has AIs, and cancer really sucks too … but for some, the idea that it is a pill a day (somewhat larger than birth control pills) that blocks estrogen in a way that is not dissimilar to the way birth control blocks ovulation, kinda works. It works for me anyways. I can do this.

    In talking with another survivor about tamoxifen yesterday, her comment was that the info package said it was to treat ‘breast cancer’, but she doesn’t have breast cancer anymore. My thought exactly. When do I get to start staying that I had breast cancer rather than I have breast cancer? In my mind, that date was December 17, 2014 – the day that I had a double mastectomy and the last of my three tumors was removed along with any other breast tissue. The pathology confirmed that all my margins were clear – meaning that there was enough healthy tissue surrounding the cancerous tissue to indicate that they got it all. So, I don’t have breast cancer, I had it.

    That being said, I’m still undergoing treatment as a result of breast cancer. My cancer surgery is done. I’ve graduated to 6-month checkups with my breast surgeon. My chemotherapy is done. However, my reconstruction is not yet finished. I still have a couple of gaping wounds that will definitely require another surgery to clean up. I’m weak from the chemotherapy and the surgery. I’ve lost a lot of my muscle mass. I’m working on getting it all back, but recovery is anything but over. So, although I’m done the active treatment for the cancer, I’m not done the treatment as a result of the cancer.

     

  • Getting back on the ‘bent

    I should be packing for our camping trip, not blogging but I really wanted to report on my latest bike adventure. I went out my recumbent today and successfully rode 10 km. The ‘bent being the bike that I rode around the world, there is a special place in my heart and mind when I get on it. A familiarity that I don’t have with any of my other bikes. There are so many memories tied up with riding this bike.

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    Today the memories that came streaming in were of the kindness of complete strangers that invited us into their homes with little knowledge about who we were. These were not the folks we met through couchsurfing or warm showers, rather they were people who saw two cyclists on a journey and said come stay with us for the night. Specifically, Judy and Barb nurses from Dead Man’s Cove (http://goingeast.ca/blog/2008/07/31/deadmans-cove/), Chandra and Clem in Kerrobet Saskatchewan (http://goingeast.ca/blog/2009/07/28/an-adventure-in-kerrobert/), and Colleen and Ed in Rainy River (http://goingeast.ca/blog/2009/08/22/oh-how-we-love-cottage-life/).

    It was so nice getting back on that bike. At first I was nervous and concerned about my abs, but after a couple stop and goes and reminding myself that the small weakness I’m feeling isn’t actually painful, I was able to do quite well. My knees are still slowing me down but are helped by a combination of ibuprofen and Voltaren gel.

    OK, time to get packing. We are spending the weekend up in Big Basin Tent Cabin camping. I’m looking forward to a couple of walks in the woods and just enjoying the atmosphere of the park in a season that is typically pretty quiet.

  • Breasts that aren’t breasts

    Over the last couple of days I’ve been reflecting on how I now have breasts that aren’t breasts. It is an odd thing really. They look like breasts. To the external toucher, they feel like breasts (or so my husband tells me). The nipples don’t react to anything, because at the moment they don’t have any sensation. I don’t expect that I will ever have nipples that react to any stimulus again – and that is one of the sad losses as part of this ‘treatment’.

    In some ways, it is a good thing that I don’t have feeling in my breasts yet. I have a pretty nasty looking wound on my left breast where some of the skin didn’t survive the surgery. It will heal or be fixed up in the ‘clean-up’ plastic surgery. If I had feeling, it would probably hurt like hell! So, from that perspective I’m grateful. But I am becoming much more aware of the fact that I have these things on my front which look like breasts but have no feeling. When I look down upon myself, it looks ‘normal’ … I don’t have the visual cue that something is amiss. It is the lack of sensation that tells me these are not breasts … and of course my surgeon and oncologist … when I ask about what ‘breast self exam’ looks like with flap constructed breasts. The comment is ‘they aren’t breasts’ … it is completely different tissue … so it may look and feel the same to the external observer, it isn’t.

    At this point in my journey, I’m encouraged to let things heal and not worry about recurrence. I’ve done what can be done to fight the cancer. The treatment was aggressive. My oncologist described it as being hit by a truck multiple times (first the chemo neuropathy, then the major surgery). So, recovery is slow and steady. I think if I say it / write it enough times I might start believing it.

  • Ugh – Don’t read the Internet <-- Worst advice ever

    In the land of Breast Cancer social media there is some talk of Joan Lunden’s 7 tips for those facing breast cancer – cause well, everyone wants to know what a celebrity thinks right?

    I’m going to rant about her first tip, because I hear it time and again – whatever you do, don’t read the Internet. It is especially said to women when they are first diagnosed, in that fog state before pathology, when you are most confused about this deadly disease you’ve just been told you have. If you are in this fog, please take a look at Breastcancer.org and read a little bit about the disease you have been diagnosed with … lots of useful information there.

    I think the advice to “not read the Internet” is perhaps some of the worst advice I have ever heard! I think everyone needs to learn how to search the internet critically. You need to learn how to do an effective search and how to dismiss information that is not relevant – that is, how to filter appropriately. You need to learn how to determine what type of site is useful, and what is not useful. What is credible and what is not credible. There is a wealth of information at your fingertips – you just need to know how to effectively use it. So rather than saying “don’t read the Internet” perhaps say “learn which sites are useful for your diagnosis”.

    For many women, especially those who are not close to major centers, the Internet is what they have. The Internet gives them a place to meet others who share their journey – it allows them to not feel alone at a time when they need that support the most. It is also full of very useful information, that helps you better prepare for doctors appointments, scans, and treatments. Don’t deny women that resource by saying “stay off the Internet” … ugh.

     

  • Getting back on the trike

    Today was my first ride on the trike since surgery. I had been looking forward to it with a sense of trepidation. I want to get back to riding, especially since it is much nicer on my sore joints than walking, but not so sure about how it will work out with my abdomen. Of course I also had to stress over what to wear – cause normal cycling garb doesn’t work well with a compression binder.

    Since we wanted to optimize space over Christmas, Scott had folded up the trike – so the first order of business was to reconstruct it. It is a ‘folding’ trike, but doesn’t fold nearly as elegantly as my Bike Friday. It took Scott at least 10 minutes to put it all back together, and we stopped several times for him to make adjustments so that it felt right.
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    I was happy to discover that I could easily get into and out of the trike. At first I got out by pushing off the seat (using my arms), but after the ride I actually got out just by standing up – mostly I didn’t over think it and subconsciously stood up.

    Unfortunately, my Runkeeper failed me (it turned itself off after 18 seconds) so I don’t know how far our ride was – just over 5km according to Google maps. I have no idea how long it took us either – we certainly were not moving quickly, but also were not too slow (Scott was challenged as he usually rides a lot faster). At one point we even got a close up look at a white egret that didn’t fly away as we approached. They are usually so timid, we were a little surprised that he didn’t move.

    Scott was goofing around with the camera. He actually got a few good backwards shots of me, but I had to laugh at this one …

     

    So it was a fun but short ride. I’m not yet sure what my body thinks of it, but so far so good. Tomorrow I will talk to one of my surgeons about my upper body and if I can ride my folding bike. If I get the go-ahead, I’ll try it out on Monday or Tuesday. Again, with the same short 5km path ride to see how my body handles it. One step at a time!

  • Selfies

    While walking today I found myself reflecting on why I no longer take selfies when I walk. Early on, and throughout chemotherapy, I always took a selfie of me smiling while I walked along the trail. I don’t do that anymore.

    One reason, is that I’m in theory finished treatment. Although my body aches, I am done with the cancer. One of the reasons I started taking selfies, was that I wanted there to be lots of pictures of me smiling. If I didn’t make it, there would be lots of happy memories for my funeral. Sounds pretty morbid, but that, in part was what I was thinking. I also wanted to show my family who live on the other side of the continent, that I was doing OK. My smile was the one thing you saw in every picture – to show that I’m doing just fine.

    I am still walking, and this weekend I will start biking again. My plastic surgeon did caution me, that I’m still healing. She was pretty clear, until 8 weeks have passed, I’m healing and I’m not to overdo it … I don’t want to over do it, I just want to do it! Walking is painful. I’m slow, but my feet also hurt. The neuropathy pain gets worse the more I walk – so it is challenging to do – but since it is the only exercise I can do, I do it … almost every day. I’m so looking forward to adding biking into the mix. Crossing my fingers it all works out.

  • Debridement and a rest day

    Spell checkers hate the word debride. It seems that ‘debridement of a wound’ is the correct spelling, but debride by itself is not. I also tried debreed – that too does not show up as a word. Too bad it is a real thing!

    After finding out that my plastic surgeon would have preferred the wounds to be moist (after explicitly asking and being told to let them dry out for a day – ugh), in the end she only debrided the two breast wounds. We decided that we would allow the abdominal ones to heal naturally on their own (at least for now). They will be left to dry out and at some point the scab will either fall off or be removed by the plastic surgeon.

    I was so nervous about the pain going into the appointment that I took a fair bit of my pain killer meds (both my daytime and nighttime meds) – so I was pretty relaxed during the entire process. I was relaxed most of the day really – and slept for a couple of hours – awaking with achy joints (oops, should have taken the ibuprofen before napping) and hungry. Although I did not feel much during the process, I am feeling it now. It is odd how I can have no sensation on a lot of the breast area, but I definitely can feel the insult to the skin.

    The good news is that since she didn’t do anything with the abdominal wounds, they will be easier to manage (I also have a lot more feeling in the abdominal area so was much more nervous about debridement of those wounds). I got the OK to go biking on the weekend as long as I promised to monitor swelling. If swelling returns, then I’m to slow down (aka less biking) and rest. I also go the OK for the Life Strong Live Well program, which starts next Wednesday (actually, the exercise portion starts on Monday February 2nd). Live Strong Live Well is a 12-week small-group exercise program that is run in conjunction with Stanford University and the local YMCAs. It is a free program for anyone who has undergone treatment for cancer, to help them gain strength after treatment (perfect for me). With it comes a membership at the YMCA, which I may use for classes outside of the Live Strong, Live Well program – although I’m not sure when I’ll be strong enough to make that worth while.

    I did not get the all clear for swimming until all my wounds have healed. I’m not certain that some of them will completely heal before we do a revision surgery – this is the additional plastic surgery to clean up the scar tissue and re-balance fat tissue (that is, lipo some fat from where I don’t want it, and fill in some where I do). I am not planning on scheduling that surgery until I feel strong again. For once, I want to go into surgery feeling totally strong. The surgery itself will be about three-hours (I was surprised at the length) but is typically done on an out-patient-basis – so no hospital stay (yay).

    So today is physically a rest day – getting both physically and mentally prepared to start tamoxifen on Monday.

  • My hair attachment

    At a support group the other night, I mentioned that our bike trip prepared me for hair loss. After riding around Lake Ontario, I cut my hair really short. I lost all attachment to my hair – as it was under a bike helmet most days – and shorter hair meant it was really easy to manage. So, when chemo meant losing my hair, it didn’t have a huge mental effect on me … I went into the experience with curiosity rather than fear and sadness.

    So now I am amused at my attachment to the regrowth of my hair. It is now becoming long enough to be unruly. At this stage, many people get a buzz cut, to cut off the peach fuzz ends and allow the growth of the new hair (which post-shower looks much darker than my hair did pre-chemo). At the moment, the white ends make it look grey. But I just cannot do it. I’m attached to my new hair (and my eyebrows are starting to come back too). So, I’m using the advice from one of the Facebook groups I’m a part of – coconut oil (like the stuff you use for cooking) is great to help calm the unruly hair. It turns to liquid in your fingers, and then re-solidifies as you shape your hair. Quite neat really.

    I’ve started to go without a chemo hat/buff to some social occasions and support groups. I usually arrive with a head covering and then remove it, mostly because it is too cold outside not to have something cover my head when I first go out. Someone in my support group who also goes out with short hair commented, that you need to be prepared to have the cancer discussion. When she doesn’t want the topic to come up, she wears a wig. Otherwise, she is happy with her new do (which is really short but looks great). I never adopted a wig – I didn’t feel the need to – I also spent most of my time at home or around friends that know what is happening – so there is no need for me to hide the cancer – perhaps if I were in Ottawa I would feel differently. Who knows. For now, I’m just intrigued by how attached I am to my unruly peach fuzzy hair!

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  • See-saw days

    I think the hardest part of surgical recovery are the see-saw days. What I mean by that is the constant change between days where you are seeing significant improvements and days were you are feeling significantly worse … and day-after-day the ups-and-downs become more and more challenging.

    Now I’m have see-saw aspects to the days. Mentally, I’m feeling better. Physically, not so much. Today’s physical struggles are related to sleeping without the wedge pillow last night. I really wanted to sleep on my side – which I did successfully. The problem was, that when I was too hot I didn’t have the strength to remove the blankets … when I was too cold, same thing … no strength when I was in that position.  For the later part of my night’s sleep I slept on my back without the wedge – and was too flat – I dreamed that I was carrying groceries and then jumped into a swimming pool (no idea why), and then I was unable to get myself out (the groceries magically disappeared) – it was just me and the side of the pool, but the water level was too low – there was no way I get out (it was a 1.5 feet from water level to edge of pool) – then suddenly it was only a few inches from the water level to the edge – and then I woke up … with abdominal pain … my abdomen is not yet ready for the flatness of the bed. I took some pain meds, put the wedge pillow back on the bed, and promptly fell into a silent, dream free sleep for a coupe more hours (thank-you pain meds).

    Now I know … we’ll wait a week or two more before we try that experiment again … but it means, physically today is going to be rough … I need to keep reminding myself, it is OK, to up the pain meds today … after a difficult night, I need the extra help … reducing pain meds should happen on good days, not bad ones …

    Mentally, I’m doing better. I’m feeling mentally stronger. I’m coping better with the joint pain (hmmm… increased pain med may be partly responsible!) … I’m typing more, and thinking more … I may even start to do some more planning … I’m thinking about academic stuff again, and potential pathways for the future … they call it ‘recovery and renewal’ … the term feels right today.

  • Cancer language and the war metaphor

    As much as I hate war … I must admit that the war metaphor for cancer is working for me right now.

    There are many bloggers who talk about what is wrong with the war metaphor (fighting cancer, cancer as a battle, etc) – and in particular how that metaphor is problematic when someone doesn’t survive – or when they are diagnosed metastatic and “winning” is not achievable.  I get it – I get the problems with cancer and the war metaphor …

    and yet …

    it is so working for me in this moment. Over the last week and a half I have been dealing with horrible joint pain – joint pain that sometimes makes it difficult to get out of bed, get out of a chair, get on/off the toilet – joint pain that is leading to depression, as I am having difficulty seeing the light at the end of the tunnel right now (don’t worry, I am getting help) … never mind going for a walk – which is current the only method of exercise I’m allowed to do right now …

    So, when I’m walking, struggling to put one step in front of the other, and my iPod shuffles to “The Warrior” by Scandal I am energized … I am reminded that I CAN DO THIS … because I AM A WARRIOR … I so need that right now … so for me, in this moment, the war metaphor is working!

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