BC Becky

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

Category: recovery

  • Learned something about my new breasts today …

    I had my post surgery follow up with my plastic surgeon today. All is healing well. Next follow up in three months or so just to check that things are healing well. She did say that I needed to take it easy for the first three weeks after surgery (so another week and a half), and that I should slowly add each sport and see how it goes. She so doesn’t know me … anyways, it will be a challenge, but I shall do my best to take it easy for another week (no biking, no gym, no swimming) – I think I can achieve the latter two, but biking might end up back on the table sometime mid next week. I did get full clearance to return to my range-of-motion exercises (which is more like yoga and gentle exercise).

    I had been told a while back that I should not be looking for “lumps” in my new breasts. That I no longer have breast tissue, so I need not worry about lumps. So, I asked my plastic surgeon about the hard spots at the bottom of my breasts (both can be quite firm). She pointed out that I no longer have lymph nodes in my breasts (my pathology reported that two nodes were removed from each breast as part of the mastectomy – all nodes were clear of cancer). The flap tissue does not have lymph nodes. The tissue left after the mastectomy can swell and fluid can pool because there are no lymph nodes to encourage drainage. If I spend most of my day upright (and I do), then the bottom of my breasts can feel hard (this is especially the case when I lay down). To help soften them I can do some massage to encourage lymph drainage – massaging towards the center chest wall. If the skin, when pinched, looks like an orange peel, that is mastectomy skin and the firmness can be quickly massaged away.  Once I tried it, I saw was surprised that it only took like a minute or two to make things much softer. Why, oh why, did someone not tell me this sooner?

  • Bought my tickets for the #RecklessTour but still nervous about it

    When I found out that Bryan Adams was doing another tour, and that he was playing in Ottawa in February, I was disappointed that there was no way I could travel to see the show. You see, I’m a huge fan. I still remember the first ever time I saw him live (Calgary 1992 Waking up the Neighbours tour) – and the words to “There Will Never Be Another Tonight” made me ignore the folks heckling behind me as I stood up to dance throughout the rest of the show.

    I was lucky to get 4th row tickets for the Corel Center opener, and then Alcatel box seats for his last show at the Corel Center show (I guess they call it ScotiaBank Place now).

    So, I was peachy pleased to learn that he would be playing at Shoreline Amphitheater in Mountain View – but I was also very nervous. Honestly, I was kind of hoping for a show at the SAP Center (where the San Jose Sharks play).  You see, my mobility isn’t what it used to be. Shoreline isn’t a great venue from a parking perspective (one road in and out means lots of traffic). It also is an outdoor venue. In the past, this would not have been a problem, but now, I’m not so sure. I cannot stand for long durations. I also cannot easily get onto and off of the ground. So, the general atmosphere of a show at the Amphitheater doesn’t play well with my current physical abilities.

    I was tempted to skip the concert, but then I hated that I was even considering skipping it. I really don’t want to avoid doing things that I really want to do just because I might need some additional assistance. After exploring a bit, I discovered they do have accessible seats for those with limited mobility (I was able to request them on the LiveNation website directly). I had to pay what felt like a premium for them – but alas – I get what I hope to be decent seats. We will still have to deal with crazy traffic to get there …  I hope they have accessible parking places … and most importantly I hope that I’m not expected to sit during the entire show, cause how can you not stand up and dance to “Summer of ’69″…

  • Loss of optimism

    At one support group meeting, someone mentioned that one thing they mourned was the ‘loss of innocence’ – more, it is the loss of the expectation that you will be healthy.

    You see, before cancer, when I went to the doctor for a check-up, I expected that she would tell me that everything was OK. At worse, the doc might say that I could stand to lose a few pound (oh how I hate the BMI as measure of health – especially when physical fitness level not taken into consideration). In general though, I did not go into the appointment with any expectation that something would be wrong.

    Now, when I go to see the doctor – even for routine checkups – I’m always afraid there will be something wrong. I am terrified (sometimes for days) that the doctor will find something. That the something will be yet another side effect of cancer, or worse yet, cancer again. I’ve totally lost that sense of things are going to be fine – that the outcome of the appointment wont be something serious.

    So, I mourn the loss of the expectation that things will be fine. Instead, I go into the appointment all stressed out, waiting for the next shoe to drop. When the appointment is over, and I’m declared healthy, I take a deep breath and sigh in relief. I so want that sense of innocence back – the sense of optimism rather than the sense of brokenness.

  • Avon Walk and Fundraising

    Hi Everyone,

    I am almost finished my fundraising for the Avon Walk – once I reach the required $1800 and my Aunt and teammate reaches hers, I will remove the link from the front of my page – and I’ll stop asking – here is our team site: http://info.avonfoundation.org/site/TR?team_id=141489&fr_id=2404&pg=team

    I’m doing the Avon Walk as a form of personal healing. It comes at a time when I should be healed from most of the difficulties from surgery and chemotherapy. I signed up for it at a time before I had neuropathy, so I did not realize just how difficult it would be to train for the walk. I think if I were to decide now, I probably would not do it – but I’m committed. In many ways, this is a good thing, as training for the walk is pushing me to get outside and stay active – to walk more – which in turn will increase my healing.

    Now that I am – in theory – done with surgeries, recovery is all about me being active – getting out there and walking, hiking, biking, and going to the gym – it is about gaining strength. Pardon the war language, but frankly, I have fought a lot of battles to get to where I am now.

    In Unitarian Universalism, we have bridging ceremonies when our kids grow from being children to youth, and from youth to young adults, and even sometimes when young adults wish to bridge out of young adulthood. These can be rather significant. I recall at the CUC ACM (annual conference) in Ottawa in 2008, I stepped on the stage to self-identify not as a young adult but as an adult – making that symbolic bridge out of young adulthood.

    The Avon Walk provides a bridge for me. It gives me a reason to train, but also provides the symbolism of crossing through the gates of recovery. I see myself walking through the gates, holding the coloured pompoms that identify me as a survivor. It gives me something to look forward to (walking the streets of San Francisco with my Aunt). In addition to walking, I’ll also be learning more about the city itself. That too will be interesting.

    I have heard from others who have done the walks (the Avon Walk, and in Canada the Walk to End Womens Cancers) that they are very inspirational. With your help, I am looking forward to that experience.

    If you have not yet donated, and can afford to help out, I ask that you please do so now. Any amount helps – http://info.avonfoundation.org/site/TR/Walk/SanFrancisco?team_id=141489&pg=team&fr_id=2404

  • Support groups and medical tests

    I’ve talked previously on the double-edge sword that can be a support group meeting. Support groups give you a space to share your thoughts and frustrations. They can be a place of information gathering, to help you better know what questions you should be asking your doctors. But support groups can also be difficult. They can be a place where you find yourself questioning your care. Whey didn’t my doctor order this test or that test? What is a ‘normal’ duration for follow ups? The meetings can leave you thinking that you are not getting the best care possible.

    This is especially a challenge in an area and culture where we do a lot of tests. A lot of the tests that are done are completely unnecessary. Tests are done because the patient requests it, and the insurance company pays for it, so why not have it? This of course is one of the reasons for the high cost of healthcare. It is also one of the reasons why some cancers are over-treated.

    I saw a specialist today (gynecologist). Because of all the discussion in various support groups, I was very worried about my risk for gyne cancers. I was worried about whether or not I was in menopause and how that might effect my health. Most of the breast cancer chemotherapy treatments cause a temporary menopause which is often called ‘chemopause’. It can last for months or years after chemotherapy. Then the hormone therapy that I’m on (tamoxifen) can also cause menopause in some people (but not everyone). There were concerns – many of which came from the various discussions at support groups, although others were from my history. I learned that my breast cancer does not increase my risk for gyn cancers (I have no genetic predisposition). I learned that I didn’t need to worry about a lot of things that had been concerning me. I learned that there was no point in measuring whether or not I’m actually in menopause, since it will not a change any treatment decisions (I kind of wish my oncologist mentioned that – as it was a big question I had lingering – I wondered why if everyone else was being tested, why I was not). And that is the key point of this post – support groups can in some ways encourage people to ask for various tests, but if the test doesn’t affect a treatment decision, then it is an unnecessary test. And with each test there are risks – unnecessary exposure to radiation, false positives, patient discomfort/inconvenience, additional cost, etc. Medical tests of any kind are not side-effect neutral – especially when you include mental health and financial health as potential side effects.

    So I am very glad for my appointment today. I’m happy to learn that I’m not at greater risk than the general population my age for ovarian cancer, and the tamoxifen risk for uterine cancer is low but it is also a cancer that shows clear signs (unexpected bleeding). Treatment is not nearly as dramatic as for ovarian or breast cancer. I’m glad that the gyne doc did not find anything seriously wrong – just stuff that can be attributed to ‘normal’ women with pre-mature menopause and tamoxifen side effects – nothing serious – no signs of additional cancers … deep breath … feeling much better now.

     

  • Shopping for some shapewear

    I’m healing. I’m also starting to think of the surgery last Tuesday as my last surgery – the last surgery as part of my active treatment for breast cancer. Arguably, this surgery wasn’t part of my breast cancer treatment, rather it was follow up ‘revision’. It was mostly cosmetic, except for the hole in my stomach, which I’m happy to report is no longer a hole.

    I bought some new “shape wear” to wear underneath my clothing. These items mean I don’t need to wear the bulky post-surgery abdominal brace that I wore for 8-weeks after my reconstruction surgery. One of the challenges with shape wear was figuring out exactly what I wanted, and how it would work for me. Fortunately, a trip to Macy’s resulted in a few different options. Here are two that are currently working for me:

    • Jockey Microfiber Slipshort – In order to get these to provide enough support for my inner thighs (which are sporting nice post-lipo bruises) I had to go with the size small. I’m a little dumbfounded that I even fit into a small!
    • Jockey Tank Slimmers – I bought this one in a large and a medium. I’m currently wearing the large, but feel that once some of the swelling has gone down and I’ve lost the post-surgery water weight, the medium will fit better. This is what replaces the abdominal binder – as it provides compression around my entire abdominal area (from under breasts to hip bones).

    I am also wearing a sports bra that provides compression to the sides of my breasts (the other area that was lipoed) but also holds the bandages in place over my incisions (I can’t have any tape on my skin). After the shopping trip, I went into my closet and tried on some shape showing clothing. I’m quite happy with how I look! (never thought I’d actually wear that t-shirt).

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  • Patient care fail – when allergies hit

    First of all, for those out there following along, my surgery went well. I’m writing this now because I’m not ready to sleep yet and it is just slightly too soon for my next round of pain meds – which I want to take just before trying to sleep.

    For the most part, my patient experience today went well despite the delay. There was one pet peeve of mine that I think it deserves a blog post. Shortly after having changed into my hospital gown, while having blood drawn, I had an asthma attack. Through coughs, I directed the nurse to where my inhaler was (in my bag, since I only had on a hospital gown). She complemented me on remembering to bring along my rescue inhaler. She also tried to get my bed relocated because the loved-one for the person next to me was wearing perfume – which is most likely what triggered the asthma attack. Unfortunately, things were really busy, so there was no spare space. The nurse validated I was OK and they left me in the spot.

    Here comes my pet peeve and rant. At NO TIME did they ask the loved-one who was wearing perfume to leave – or move away. The asthma attack was treated as my problem, and not the problem of the person who caused it in the first place! In this day-and-age, why is it OK for someone to wear perfume in a hospital? And especially in the pre-operative area of a hospital? None of the patients are permitted to wear it – heck, you are required to shower twice with special soap and put no lotions or creams on your skin.

    Until places like hospitals adopt zero tolerance policies on things like perfume, the practice will continue. And people like me will be the ones to suffer – not those who are doing the offending in the first place.

    Please take note – <begin rant>  if you like to wear perfume – stay away from hospitals, concert halls, and expensive restaurants (where the food is meant to be smelled not the person next to you) <end rant>. And nurses, I don’t care how uncomfortable it makes you feel to ask the offending person to leave, you need to stop punishing the patient! Ask the offender to leave, perhaps ask them to use the restroom to wipe off as much of the perfume as possible … it may be a futile exercise, but it will send a message, and perhaps that person will think twice the next time.

  • Plastic surgery and post breast cancer vanity / guilt

    When I told one of my colleagues at the University of Ottawa that I was moving to Silicon Valley in California, she comment that she thought it was “Silicone valley, because of all the fake boobs”. At the time it was rather funny.

    Living in California especially, the whole idea of cosmetic plastic surgery is loaded. It brings to mind women who feel the need to change their looks in order to be accepted, or to get that acting job. It brings to mind millionaires who can afford to have their bodies sculpted as a way to try to increase their self confidence. It reeks of vanity for vanity sake, and feels judgmental.

    In the last couple of weeks others have posted about the frail body image of women who have gone through breast cancer treatment: Nancy talks about reclaiming body image, and Diane talks about coming to terms with your post-cancer body.

    I never would have thought of myself as the type of person who would have voluntarily opted for cosmetic surgery. So far, I’ve been able to self-justify my surgical decisions. My first plastic-only surgery is scheduled for tomorrow (or next Tuesday, I’m awaiting word). If I didn’t have a hole in my belly, it would be considered strictly cosmetic (scar tissue clean up and liposuction of the abdomen). It would not be medically necessary – and yet it would still be covered under insurance. One benefit to breast cancer is that while I’m insured in the US, I’ll have unlimited access to revision surgeries.  This means that if I decide 6 months from now that I want larger breasts, I can go in for a fat grafting procedure, where my plastic surgeon will do liposuction on a secondary site (e.g. my thighs). I can choose to have my body surgically sculpted.

    With this comes waves of guilt. I find myself self-justifying the procedure. I’m more interested in the lipo of the thighs than I am in want of larger breasts.

    Unlike many women who go through breast cancer treatment, I’ve always been able to look at myself in the mirror. When I look at my wounds and my scars, I am not judgmental of what I see. My lines are kind of funny at the moment, which is what I’m hoping the plastic surgery will fix – I feel guilty that I want my body lines to run smoothly without the extra pouches of fat.

    I’m more concerned when I look at the scale. I hate that chemo and now the anti-hormone treatments make it nearly impossible to loose weight. I do eat right. I do exercise. Nothing seems to work, so there is that ray of hope that comes with the thought of plastic surgery – but also that twinge of guilt at the thought that I’m letting my vanity get the best of me.

    I’m afraid to go clothes shopping – I’ve completely avoided it for the last 9-months – such that many of my clothes are threadbare and in desperate need of replacing. My body is a completely different shape now. The last surgery changed my hourglass shape into something more of an A-frame. It may change again with this next surgery, so I’m waiting to go shopping – I’m waiting for things to be a little more stable but I cannot wait indefinitely.

    My emotional self gives me permission to do any of the plastic surgeries that I want. I’ve earned the right to choose to have my body sculpted. My thinking self argues back that I’m being vain – that I might be opting for surgeries for vanity reasons only, and really they are not necessary. But then I ask myself, does reclaiming a positive body image worth the surgeries? Will the surgeries really help? Am I being weak by feeling that I might need the surgery in order to have a positive self body image?

     

  • Tenacity and over doing it …

    Taking a multi-hour bike ride requires a small amount of previous training and a large amount of tenacity. It was what powered me through the many long days on our Goingeast bike tour. It was that tenacity that powered me through my epic ride yesterday. At a certain point, turning around was not an option – after all I only had another 2.5 km to go! My thoughts went something like ‘You’ll be required to rest for the next few weeks, so you can push yourself now’.

    Unfortunately, I’m learning that my tenacity is stronger than my body! After dinner last night I developed chills and a fever. Fortunately, this morning the fever was gone but I’m feeling a little bone pain – however, I’m starting to feel the fever come back. Bone pain is difficult to describe – it is like joint pain, except that you don’t need to be moving to feel it – it is an all over ache. Right now, a fever is not a good thing (when is it ever, but particularly right now the timing sucks). I’m scheduled for surgery on Tuesday, and a fever would mean they post-pone.

    And so, I need to remember, that I may have the tenacity to bike for several hours, my body doesn’t have the physical ability to recover from it. At least not yet. I am going to need to be more attuned to when my body says “turn around”, that I could maybe push through it once or twice (there is always a second wind, and if I stopped at the first struggle I’d never improve), but that at some point I need to just listen to what my body is saying and stop.

    Lesson learned – now time for the headache and fever to go away!

  • An epic ride

    Today’s ride was rather significant for me. For the first time since treatment, I made the ride up Mount Hamilton from the Fire Station. The last time I did the ride was back on June 20 – just as I was starting this blog. Since then I’ve been through 16 weeks of chemotherapy and two surgeries. I am thankful for the time I’ve already spent with the Living Strong Living Well program, as it certainly has helped me gain some of my strength back. I was clearly not as strong climbing today as I was back on June 20th, but this time I also wasn’t stopping at every corner to cry (rather I stopped frequently to drink).

    After the first 30 minutes (and 2.8 km) I didn’t think I had any hope of making it to the top. But I stuck with it, and 2 hours later I made the last pedal strokes up to the Observatory (2.5 hours up, 35 minutes down).

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    What is also significant about this ride, is that I was doing it in part to celebrate being 3-months cancer free. Technically, the last bit of known cancer was removed from my body on December 17th, 2014 – which was confirmed with the pathology on December 29th. March 17th, the 3-month mark exactly – is Tuesday – also the day in which I have scheduled for my next (and hopefully last) surgery. So, I’m not going to be able to ride on Tuesday … and who knows how long it will take me to recover from this surgery, but this time I’m going into it strong!

     

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