BC Becky

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

Year: 2015

  • 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!

  • Celebrating my boob job and cancer language

    Several women in the breast cancer blogosphere have commented on how inappropriate it is to say to someone with breast cancer that “at least you get a free boob job” or any variant thereof (see Reconstruction after breast cancer: It’s not a boob job). I agree. If you have never had breast cancer, you really do not understand how difficult reconstruction is – especially after your body has gone through chemotherapy and/or radiation treatments, which make reconstruction that much more difficult. It is certainly not a route that the majority of us would have chosen to go through. On top of that, reconstruction is also a difficult personal choice – to choose the physical pain of the surgery over the emotional well being and struggle with body image, a struggle that many of the women had even before their breast cancer diagnosis.

    With that being said, as someone who is still recovering, but recently (Dec 17) had a double-nipple-sparing-mastectomy with immediate DIEP Flap reconstruction (a 12-hour surgery), I have the right to celebrate my new breasts (noobs). I am one of the luckier ones – I didn’t need radiation as part of my cancer treatment. I did neo-adjuvant chemotherapy, which meant that my reconstruction did not need to be delayed. I was able to get through the worst of the surgeries in two surgeries (I’ll have a third to clean things up once the current one has fully healed). Instead of years of reconstruction, I have a reasonable hope of being done with surgery before the end of 2015. The reconstruction surgery wasn’t 100% successful – in that I did loose some skin in the process. My nipples aren’t what they used to be – but they are still all mine and I won’t need to go through the process of nipple reconstruction. My noobs are perky – now that four weeks have passed I’m allowed to set them free. I can go without a bra. I tried one of my favourite shirts on, one that I always needed a bra to wear, and I’m quite happy with how it looks. It will look even better when I’m not wearing the abdominal binder. I need to wear the binder for another 4-weeks. It almost feelings like my original buddha belly  – but even as the picture shows, I do have a slimmer profile (and I’m still a bit swelly overall from the surgery). I’m sure the post-cancer me will look ‘healthier’ and slimmer than the pre-cancer me – which is rather ironic really.

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    This brings us to another cancer language ‘trap’ as Nancy calls them – see Nine Cancer Language Traps.  That of cancer being a ‘gift’. Honestly, I would rather go back to the pre-cancer me – the lumpy chubby me. The one that was strong, and growing stronger each day as I enjoyed regular 30+km bike rides. I may growth through this experience – as we grow through all of life’s experiences, but this last 8 months has been anything but a gift.

    So, as I struggle through the aches and pains of recovery, I will celebrate how I look even when I’m not yet feeling great. Feel free to tell me ‘you look great’ … but don’t ever use the term ‘free boob job’ unless you too have experienced a breast cancer reconstruction, in which case, we can share that ‘insider’ experience.

     

  • Crying and TV

    I sometimes need to just cry. It has been awhile since I’ve had that feeling. It used to be that my eyes would plug up (they produce goopy oils that don’t always clear on their own) – so a cry would help that out. The cry also helps with processing feelings – it just feels better after a good cry.

    Every since my cancer diagnosis, I haven’t been able to watch some TV shows. Some I enjoy, but others that I used to enjoy I can no longer watch – specifically, I cannot watch Criminal Minds anymore. I cannot deal with the suspense. I find the high suspense level increases the stress response in my body, and I just cannot handle it anymore.

    I’m also very aware of things that cause me stress. I find that I do my best to remove myself from the situation. Having to re-live and re-tell the issue at Stanford and the catheter has been one of those challenges. It was important that the feedback be provided, but also it is a source of stress that I no longer wish to retell, and relive … I just want that to be over.

    I am glad that the next season of TV shows has started up again, as I often find that TV helps me cry when I need it. After watching this weeks episode of Parenthood, I cried almost all the way through it – and I feel a lot better. I needed that good cry … it just made me feel a little less sorry for myself, and a little better in general.

    I’m looking forward to a bunch of my regular TV shows to start back up again. I’ve been watching reality TV shows (mostly cooking shows) a lot lately (I can watch whole seasons on Hulu) but they don’t make me cry and provide that same catharsis.

    And now, despite my joint pain I am going to go out for a walk. We have a new working theory on the cause of the pain … and it if is true then hopefully within the next few days things will start to get better rather than worse … let’s see how today goes … yesterday was just over 2km, with two breaks to sit down, which is a drastic decrease over last week. I’ve taken several rest days, so this is not about me over-doing it … definitely need to get to the bottom of it before I start a new medication where one of the possible side effects is joint pain (although I’m told with tamoxifen, the joint pain is relieved by exercise – where what I have now is worsened by exercise).

     

  • I look good but … and real hugs

    I look good but I feel like crap. Actually, mentally I feel good. I took a higher dose of drugs last night (and more melatonin) so I slept better than I’ve slept in a while. Unfortunately, I’m having another side effect – at least that is what we think it is – we think it is a side effect of chemotherapy – but as the days go by it gets worse 🙁 … my joints are sore. More specifically my ankles, feet, knees, and fingers. I tried doing some yoga positions on the floor, and found myself having to crawl to the bed in order to get up (fortunately, I was strategic in my attempt, so that I was not far from the bed) … I cannot get myself up off the floor … it also means a fair bit of pain in the knees when I use the toilet … I so hope these symptoms subside soon!

    On a more positive note, I can do almost normal hugs now. I was so missing getting a real hug from my husband. Two months of fragile afraid to break me hugs had me missing a real hug. So yesterday we tried real hugs – with squeezes and everything – and it worked out … that definitely made me feel much better …. although yesterday I was feeling pretty sorry for myself …

    I also got a note from my plastic surgeons office that I can officially allow my noobs to go free – that is, I no longer need to wear a bra of any type. That being said, they still have incision scars that ooze a bit, so I do find that I need something to hold the dressing in place and keep the oozing off my outer clothing – but still – it is nice that my noobs are allowed to be set free!

    For my birthday, I think we are going to go camping. I’m planning it now. We are going to rent a tent cabin up at Big Basin Redwoods State Park. The tent cabin means that I’ll be sleeping on a raised bed – so I am not on the ground and can easily get up. The tent cabins have wood stoves for heating, so I won’t get too cold. A couple of friends may also come up and join us that weekend. Big Basin is close, so if things don’t work out, it is an easy trip to get home – but to spend a couple of days in a tent cabin in the woods will be nice – just being able to breath the air, and read a book while sitting under a 2000 year old tree is restorative in and of itself. I could use that about now.

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