BC Becky

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

Year: 2015

  • There’s a hole in my belly …

    There’s a hole in my belly, dear Liza, dear Liza,
    There’s a hole in my belly, dear Liza, a hole!
    (Sang to the tune of the famous Childrens song)

    Sorry, the song has been going through my head all afternoon! I have a hole in my belly. If you are interested in what it looks like, you can see in this photo (not for those who are squeamish about such things: http://dttocs.smugmug.com/photos/i-f7gnvM7/1/M/i-f7gnvM7-M.jpg). It is a bit interesting, as you can clearly see the layer of fat tissue that exists underneath the skin layer. The skin layer is actually pretty thick – such that the hole is almost 1cm deep.

    Went to the plastic surgeon today and she confirmed that although I have a hole, it is “healthy” tissue – so no signs of infection (I’m doing something right). She also confirmed that the breast wound is actually healing (new skin is growing). For the belly wound, I’m being referred to the wound center for weekly (or twice weekly) care. She is also putting in an authorization to my insurance for a SNaP wound system (crossing my fingers that I don’t react to the adhesive!). This puts negative pressure on the wound which helps it heal. It can reduce healing time to half; however, it means I’ll be visiting the wound clinic twice a week until my next surgery (seeing my surgeon once a week at the wound clinic). That being said, it very well may not heal without surgery, so we have also kicked off the process for the revision surgery. I’m now waiting for various phone calls to find out when my next series of appointments will be.

    I was really nervous taking a shower after today’s doctor visit. It is interesting, because I’ve been showering with the wound all along. The only difference today, is that the doctor cleaned it out a bit. You can clearly see the fat layer now, where before there was a layer of dead skin over top. Fortunately, it didn’t really make a difference. Showering felt the same as it did before.

    I’m also surprised that I’m not so nervous about the next surgery. I’m actually eager to get it over with. I’d like to feel like I’m healing, and like this whole ordeal is behind me. The biggest obstacle to that ending is this revision surgery (which hopefully will be the final surgery). The surgery itself will take about three hours. It is long, but all the work being done is superficial. Mostly it will be scar clean-up, but there will also be some liposuction and moving around of some fat (to fill in gaps to make my breasts rounder). From my readings, it sounds like the lipo is actually more painful than the scar cleanup is. I’m a bit nervous because it is something new, but I’m hopeful that this time I’ll be going into a surgery with normal red blood cell and hematocrit levels. This should make a huge difference on recovery. I’ll also be stronger.

  • 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.

     

  • 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).

    Photo & Video Sharing by SmugMug

    Photo & Video Sharing by SmugMug

    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.

  • Mental health, #bellletstalk, and pink ribbon campaigns

    Yesterday was #bellletstalk day – for those who are not in Canada, it is a day that the major telephone provider encourages people to talk about mental health, and donates money (e.g. 5 cents per tweet or text) to mental health charities. It has been criticized here by Torquil Campbell as purely a marketing stunt and compared to Pink ribbon campaigns for cancer.

    Here is the thing. It is different. Yes, it is still cause marketing, but the big difference is that it actually promotes awareness! Unlike many pink ribbon campaigns that are intended to indicate that you support a cause but really just help sell product, they often provide no education about breast cancer – they are not raising awareness, they are selling products. They teach nothing. On the other hand, Bell let’s talk has caused many different bloggers to talk about mental health – and to tweet out their links. These bloggers are actively providing the public with information about mental health – perhaps the Huffington Post should look at promoting some of THOSE tweets / posts!

    In my world, I’m seeing what appears to be an interesting ripple effect, such that for the last two weeks many different people (many not Canadian) have been talking about mental health issues on their blogs – this my simply be coincidence – but I find it a particularly interesting correlation.

    So, I must respectfully disagree with Torquil Campbell – Bell Let’s Talk day is actually encouraging people to talk about mental health, and that’s a good thing!

  • 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 …

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