BC Becky

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

Category: recovery

  • Neuropathy – what’s old is new

    I seem to be going through these cycles. The first time, I called it chemo recall. It is when my body gives me the same symptoms I had during chemo, except that I have not had chemo since October 30!

    Neuropathy is one of those recall symptoms. Today (started yesterday or the day before) it is in my hands. My finger tips to be more precise. The best way to explain it is that it feels like I have hangnails on all my nails, except that I don’t. My nails are just fine (well mostly). My finger tips are also very sensitive to hot water, making dish washing especially challenging. They hurt when I type. Thankfully, I’m pretty good at writing by dictation as well as typing with the flats of my fingers. I’m also clumsy and I drop things.

    At this point, I’m hoping that this new neuropathy pain is a sign of healing rather than a sign of continuing damage. It is the same feeling that occurred when the nerves were dying (or similar enough) so perhaps that is the feeling you get when the nerves start growing back again (ugh)? That’s what I’m hoping. I’m hoping that what I’m experiencing is regrowth of nerves. Only time will tell.

  • 44 and groundhogs

    Not a lot of time for reflection today I’m afraid. I have a busy day ahead of me. To the world around me, it doesn’t matter that today is my birthday. Today, I’m 44. I am happy to say good riddance to 43 – for me, in many ways it shall be the year that never really happened but also the year that I accomplished a lot in the way of personal growth. I understand a lot better my priorities in life – still don’t know how that will translate to what I will end up doing, but I do understand my priorities better.

    My promise to myself this year is to prioritize exercising and writing. These are two things that I love doing. While reading Wild in the wood, as well as various peoples’ blog posts, it occurred to me that I should learn more about writing. More specifically, I should look at developing skills in writing dialogue and improve my skills in storytelling through writing. I understand blogging – and I understand blogging in different genres. What I need to do now is work on writing in different format. Autoethnography has captured my interest. I’ve learned to write in different genres. I’ve been a professional technical writer, I’ve published academic papers, and I’ve been a blogger for almost 10 years. My next step is to actually take on writing a few books. I have a lot of content, but no sense of how to organize it, how to put it all together, how to write it in a format that is consumable and usable to others. More importantly, how to write it in a manner that is engaging to others …

    In Canada today, all the attention is put on rodents – Groundhogs to be specific. Today, if the groundhog sees his shadow (Ontario’s Wiarton Willie did not, due to a blizzard) and goes back into hiding, then an additional 6-weeks of winter is predicted. I always hated the way people wanted the weather to suck on my birthday – that way, he wouldn’t seen his shadow, and stay out rather than hibernate for another six weeks. There seems to be no such myth in Northern California, where ‘winter’ usually means the rainy season. It has been another warm January, which has been great for getting out and exercising but not great for the draught.

    Today, I’ll be doing my equipment orientation and first session for Living Strong Living Well program – I’ll write more about that tomorrow. Mostly, today is filled with exercise, chores, and couples group. A pretty ‘normal’ day.

     

  • Wild

    I had started reading Wild by Cheryl Strayed shortly after I was diagnosed with cancer – just as I began chemotherapy. Unfortunately, that didn’t go over too well. Reading about her mother dieing of cancer left me with thoughts of my death and how difficult that would be on my loved ones. I was overcome by sadness and depression. I realized at that time that I could no longer handle emotional subjects. I needed to limit my reading to lighter topics.

    A couple weeks ago, I finally felt ready to continue with the book. I had heard the movie has come out, and wanted to read the book before watching the movie. Since I really enjoy the genre of adventure travel, I figured I’d enjoy her journey of walking the Pacific Crest Trail. The book itself is much more than an adventure travel journal, it is a memoir of a difficult life that I suspect was very difficult to write.

    I finished reading the book this weekend, reading by candle light (good that my Kindle is backlit) in a tent cabin at Big Basin Redwoods State Park. It felt appropriate to be reading about her walking through the woods while sitting under giant Red Woods. I highly recommend the book.

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    When I think about writing a book about my Going East journey or my Cancer journey, I struggle with how to find my literary voice. I also struggle with how to write something that is good. I’ve mostly figured out the blog genre. I’m happy with how I write when I blog (most of the time anyways), but I have no idea what my voice would look like in a book format.

    In addition to lots of reading, we also took a walk in the wood – 5.5km (2 hours) – the furthest I’ve walked in a single walk in a long time. Since it was in the woods, it was more of a hike involving ascending and descending various hills. Just over a week ago, we increased my dose of gabapentin (used to help reducing the side effects associated with neuropathy). I’m happy to report that the increased dose seems to be working. I’m not only stronger, but I’m feeling my feet for longer. I mostly notice the neuropathy kicking in after about 30 minutes of walking. After an hour, it is rather painful, so the second hour I become more focused on walking and the pain, and less focused on what is around me (a shame given the I’m surrounded by 2000 year old trees).

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    Overall, it was a good weekend. We arrived home tired. Camping in January in Northern California is cold (not as cold as Yurt camping in Ottawa, but still, it is cold). We were very thankful for the wood stove in the tent cabin. My current post-surgical condition (difficulty using my abdominal muscles to sit up) made it that much more challenging. We were thankful that we opted for the more expensive tent cabin rental option, rather than trying to sleep in our tent. As much as i enjoyed being up at Big Basin, and the hike we did on Saturday, I don’t foresee us camping in January again anytime soon.

  • 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.

  • Driving and a glass of wine

    Today marks a transition. I’ve been off the narcotic pain meds for over 24 hours, and I’m not feeling any sense of apprehension about movement in my upper body. As far as the plastic surgeon is concerned, my breast flaps have healed (the skin/scars need work, but the flaps themselves are fine). With full motion in my upper body (still wearing an abdominal brace but weaning off that at night too) and no narcotic pain meds (I’m still taking Tylenol and ibuprofen), I’m finally allowed to drive again.

    What this also means is that I get to have a glass of wine with dinner – not before driving of course! I have allowed myself the occasional sip of Scott’s wine, but that is it. I so miss being able to drink a glass of wine with dinner (almost as much as I had missed my morning cup of coffee).

    So today marks a transition. Driving again and wine with dinner (mental note, put bottle in fridge!) … two big steps today!

  • 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.

  • Everything yet nothing is cancer

    At this stage every ache causes me to question, then dismiss cancer. My first thought is, is this cancer? Has it spread … and then my logical brain jumps in and says no, this is not cancer … so in some ways, everything feels like cancer, yet nothing feels like cancer.

    I did get some re-assuring news from my breast surgeon. They were meticulous about removal of breast tissue – so were other surgeons may leave a little more, she scrapes the skin thin to remove all the breast tissue – sometimes this causes skin death (I have a small patch that didn’t make it) – which it then becomes the plastic surgeon’s job to fix. I’m OK with that. So, if a ‘local recurrence’ were to happen, it could be on the skin itself or on the chest wall. Both are very rare – they don’t actually screen for the chest wall recurrence. My next visit with her is in 6-months (yay).

    My oncologist also made me feel better about my other aches and pains … my worries about spread being so unlikely (but hey – so is bilateral breast cancer) … but still. I was informed that there is a 1-3% chance of improved survival with ovarian suppression and aromatise inhibitors (AIs) over tamoxifen in pre-menopausal women (note that it is an increase of 1-3% not an improvement of 1-3% … meaning if survival is 70% then the increase is (.7*.1 to .7*.3) or 70.7-72.1% (I think I did that correctly). This is causing the clinical oncology world to question which treatment option to be recommending. I’m going to start off with the tamoxifen and see how things go. Both the tamoxifen and AIs have side effects, and I really don’t like the AI side effect of increased risk of osteoporosis – where the tamoxifen actually helps your bones stay stronger. We shall see how it all goes … I’ve been told I can wait a little longer before starting the tamoxifen (a couple more weeks) to better recover from the surgery …

    Today I went on the same bike ride as yesterday, just on a different bike. The distance was almost 6km, and it took 23 minutes (on my Bike Friday – foldie which is definitely faster than the trike). The tension on my arms was a little more than I’d like, so I will give the Bike Friday a rest for a few days (or until next week). My knees are feeling better but they still hurt a bit when I bike. If you would have told me at this time last year that I’d be struggling to ride 6km I’d have laughed at you. But, alas, I am taking it one step (or pedal stroke) at a time …

  • 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.

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