BC Becky

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

Category: Emotional Journey

  • What do you do?

    What do you do? Such a simple question, and yet one that is crazy difficult to answer at the moment.

    The truthful answer, is that I consider exercise and writing (this blog and my other blogs) as my full time job. What I do at the moment is write, exercise, and try to gather strength for surgery.

    When you are in the cancer community, the question isn’t asked that often. When it is, there is an understanding that right now I’m “in treatment” … so what I do is treatment. But when I’m with a new group of people at church or another social event, the question is an immensely difficult one to answer, and rather awkward. Do I say that I’m in treatment for cancer (usually yes, that is how I answer the question)?

    I was doing a PhD, but I’m not doing that right now. I’m on leave. I was a part-time professor. Although I still use that occasionally, it is somewhat dishonest – I’m part of the part-time professors union. You are a member for 2 years after you teach a class. But I’m not teaching right now, and likely won’t be teaching at uOttawa in the near future. I am, however, doing some research at uOttawa as a part-time professor.

    I’m also a consultant. I produce eBooks for the iBooks Store. When I’m not in active treatment, I’d like to do more of this … as I like helping people self publish.

    The question wasn’t always that easy to answer before cancer, but I could say “I’m working on a PhD”, or I’m a freelance eBook Producer (in the US the term freelance is used, in Canada it is more common to use the term consultant) – both of which were conversation starters. The cancer answer is often more of a conversation killer …

    For now, what I do is exercise and write … one step at a time …

  • ‘For now, the chemo is done …

    Yesterday was my last scheduled chemotherapy – taxol. We went to the tree before my first appointment and took the requisite pictures. I had some fun with it.

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    Towards the end of my treatment, the chemo nurses sang the chemo song: http://vimeo.com/110530951

    A tear or two did drop from my eyes as they were singing and congratulating me. For the last four treatments, I had been anticipating the moment I finally got to say “this is my last chemo”. The problem is, I don’t feel like the chemo is done. Let’s start with the fact that this may have been my last infusion, but I still have to go through the side effects from the last infusion – so I still have a difficult week ahead of me before I start to recover from the chemo. But also, my treatment isn’t done. I don’t know what the results of the pathology will show. So, for now the chemo is done, but I just don’t know that it is really done. So instead of ‘hey now, the chemo is done’ … it feels more like ‘for now, the chemo is done’ …

    From the treatment perspective, focus is now shifting to surgery. It seems each time I see the surgeons things change a little. I wanted to know from my breast surgeon, where the incisions were going to be and what I could expect when I wake up from the first surgery. The thing is, they do the incisions on the first surgery based upon the second surgery – so they can use the same incision points. Fortunately, Thursday is the day that plastics are at the women’s center, so my breast surgeon brought in my plastic surgeon and the two of them discussed and decided where the best place would be for the incisions. The my surgeon drew on (in ballpoint pen) where the incision will be.

    We then talked about pain management. Prior to surgery I will see nuclear medicine to have an isotope injected to help identify the sentinel node(s) for the sentinel node biopsy. In my case, this will involve approximately 4 needles in each breast, each feeling like a bee sting. Then, I’ll go to mammography center where they will use a mammogram machine and place wires that the surgeons will use to identify where two of the tumors are (current plan is to only remove L1 and R1 – one tumor on each breast). Typically, a local anesthetic is used for wire placement (although it still not pleasant with the mammogram machine squeezing – which is extra not fun when you have port). They don’t usually use any anesthesia for the nuclear injections. Of course, in most cases, women are only doing this with one breast. My surgeon happens to be connected to the head person for pain management in anesthesia (the regional director). Given all the pre-surgery procedures, I’ve been referred to him to have paravertebral nerve blocks prior to the visit to nuclear medicine for the injections. This will mean (in theory) I won’t feel anything around the breast area.

    All my pre-op appointments are scheduled in the morning. Surgery is scheduled for 1:30pm and has been booked for three hours. Then I go to recovery for at least 2 hours (while I wake up). I’m booked for an overnight in the hospital. I’m happy to be in the hospital overnight, as that is when all the surgery related pain meds will wear off – so I’ll have ready access to doctors if needed to help with pain management. We will leave the hospital with written prescriptions for pain meds (actually, I’ll probably send Scott over to the Stanford pharmacy to get the filled – so we will leave with the drugs in hand).

    I continue to be impressed with the little bits of special treatment I’m getting. I’m definitely a squeaky wheel – in that I booked the extra appointment to see my surgeon because I didn’t know where she was placing the incisions – and I wanted to know. I’m so glad we had the appointment, as I have a much clearer picture of how things will work on the day of surgery, and being a special case for pain management will also mean my personal experience will be a little less painful.

     

     

  • A turning point

    I got out for a bike ride this afternoon, 21km on the trike. What was really interesting is when my iPod started playing Bon Jovi’s “It’s my life”. This song has had special meaning for me, ever since karaoke in the crew lounge in the middle of the Atlantic on a container ship. I almost always listened to it when I ride, and over the years it has always provided me with a moment of reflection – and usually a smile at the reality that my life is pretty darn good. The song has always caused a reflection in the moment, causing me to count my blessings, it has always been a celebration of happiness. At least until cancer hit … ever since my diagnosis I haven’t had any reaction to the song. My reaction has been more of indifference. At least until today.

    For the first time since my diagnosis, I had that same happiness reaction to the song. Perhaps it was the extra three days off chemo, I’m not sure. For the first time since my cancer journey began, I have been able to see beyond cancer.  Until now, I had been seeing all the doors that had been closing, but suddenly today, I’m seeing the doors that are opening. I’m signing up for crazy things that my cancer diagnosis is allowing me to sign up for like Cameras Over Cancer. I’m feeling good about my surgery decision and looking forward to ‘the new me’ after surgery. There indeed are some benefits to having a plastic surgeon sculpt your excess body fat into something more cosmetically appealing. I’m curious to see what my ‘new normal’ body weight will be. I’m free of worrying about my body weight and BMI now, knowing that my weight will necessarily change as a result of the surgery.

    I’ve also found that cancer has introduced me to many incredible people – people that I otherwise may never have crossed paths with. I had not realized how much of a local support group I actually had until I found myself in need of a ride to my next chemo session as Scott is away on business next week (chemo side effects mean I cannot drive myself right now). I was amazed at just how many people offered help when I asked. One blessing that cancer has brought me are all the wonderful people that I now know, for that, I am thankful.

  • Temper tantrums

    Yesterday, I felt like a two year old having a temper tantrum. I don’t wanna! I screamed to myself as tears dripped down my eyes.

    I got a call from the surgery scheduler. They were awaiting word from my oncologist about chemo scheduling. After talking they conferred with my oncologist, I got word that the plan is to do chemo on Thursdays until the end of the month, do the first surgery on November 19, and the second surgery on December 17. This, in theory, is the plan – however, I have not yet received confirmation on anything other than chemo this Thursday – which was the “one more” my oncologist and I agreed to on Monday. I knew there might be more than one more, but I don’t have to like it. My one goal on Monday was to NOT have chemo on Monday – I just need a couple more days to feel better before facing any more. I’ve been glad for these last couple of days.

    I’m actually of quite mixed emotions. This plan actually works for me – it lets me still get in a trip to Hawaii before the first surgery, and a trip to visit my parents before the second surgery. We ran through the schedules last night, and it even looks like my friends from Nova Scotia can still join us in Hawaii (yay). The extra chemo gets me that much closer to finishing the protocol (which calls for 12 sessions of taxol – in the end I’ll have 8 sessions). Part of me doesn’t want the extra two chemo sessions – I’d just like to stop chemo and go on with the surgery, but another part says – what if those extra two are the difference between beating this thing and not? Will those two extra sessions be extra insurance against re-occurrence? Metastasis? Of course, we don’t know. We have no way of knowing whether or not a couple more sessions of chemo will make any difference what so ever. But to align with the surgery schedules, it is best that I am in chemo right up until three weeks before surgery. And then I actually get four weeks between the first surgery and the second surgery. I’m happy for a little extra time to ensure that I’ve healed.

    So the two year old in me is jumping up and down screaming about the need for more chemo, but the logical side of me is OK with the new plan but would like to see some form of confirmation on the new dates, so that the planner in me can make travel arrangements!

  • Groundhog Day

    Last night I was reminded of Groundhog Day – if the groundhog sees his shadow, then 6-more weeks of chemo – if he doesn’t see his shadow, then we are done with chemo. Today is mostly cloudy (figuratively, not literally, its almost always sunny here).

    MRI results are rather encouraging (although I don’t completely understand them) – there is no sign of nodal involvement. The more encouraging line in the results relates to the large tumor on the left breast (L1), which the report says “there is near complete resolution of abnormal enhancement”.  The other two tumors, L2 and R1, have shrunk but are still there – as these were slower growing, it isn’t surprising that they are less responsive to the chemo. The general consensus is that I’ve had an excellent response to chemotherapy and that I can proceed to surgery at any time. Chemo is only needed to maintain until surgery – so if they cannot get the surgery scheduled soon enough then additional chemo is needed.

    The next new bit of information is relating to the surgery. The breast surgeon recommends a two-stage approach – the first being a lumpectomy, sentinel node biopsy (axillary lymph node dissection only if positive biopsy), and devascularization of the nipple and aerola complex. All the removed parts are then sent to pathology for full analysis. In essence, this is the cancer surgery plus devascularization of the nipple area. The devascularization increases the blood flow to the skin around the nipples, reducing the risk of issues with the reconstruction. It also includes a biopsy of the area under the nipple, which determines whether or not the nipple can can be spared. This is done approximately three weeks after the stop of chemo. I’m waiting to hear on dates for this.

    The second surgery is bilateral mastectomy sparing the skin and nipples (only if they are cancer free) with immediate flap reconstruction.  This happens about three weeks after the first surgery (this is tentatively set for December 16th but will likely be earlier).

    What I like about this approach is that we get the cancer out quickly – so it is gone before it gets a chance to grow again. We will also have pathology before reconstruction. It doesn’t necessarily change the surgeries, but it is a consideration (we will have confirmation that radiation isn’t required). It makes the breast surgeon’s part of the second surgery a little easier, but that isn’t the big part of the second surgery. The bigger part is the reconstruction – so the second surgery is still a long surgery (8-10 hours).

    After the second surgery I start anti-hormone therapy (tamoxifen) for 10-years.

    There is also a third surgery that takes place no sooner than 3-months after the reconstruction. This is the “revision” surgery. Once everything has healed from the cancer surgery and primary reconstruction, the plastic surgeon goes back in and cleans up any scar tissue and lyposuctions any extraneous fat pockets.

    So where does this leave me? After all the surgery discussions today, my oncologist still wants me to do one more chemo treatment. I wasn’t willing to do it today (I have mouths sores and I want to give them a little more time to heal). So I have chemo scheduled for Thursday. Depending on when the first surgery date is, this will likely be my last chemo.

  • Mentally preparing

    I am preparing myself for disappointment. I have convinced myself that I can endure six more rounds of chemo, but only if I can have a week off to gain some strength. Love how I’m bargaining with this cancer? Tomorrow I expect I’ll be bargaining with my oncologist. I only hope that taking a week off is something that is possible/makes sense. If I have a week to regain some strength, grow a few more red and white blood cells, and  allow my mouth sores to recover, then maybe I can endure six more weeks of this chemo.

    Now, I will be pleasantly surprised if the MRI comes back saying that the tumors are gone (or even mostly gone). This would mean that I stop chemo and start regaining my strength in preparation for surgery. As much as I’d like this option, it isn’t what my gut is currently telling me. When I bend over, I can still see some skin retraction – so I can still tell where the larger tumor was – it no longer feels like a hard spot – and the doctors say that my breasts feel normal – but I can still see signs of it (although this could just be scar tissue or dead tumor remnants).

    So I’m mentally preparing myself …

     

  • My first Pink’tober

    If you haven’t noticed yet, October is breast cancer awareness month. It is a month full of tacky fundraisers in the name of breast cancer awareness. I cannot say that I really noticed pinktotober before, it had no meaning in my life. I believe March is cancer awareness month – the month when daffodils are sold as fundraisers for the Canadian Cancer society … or it is April … Somehow, these things never really mattered to me.

    Now, I cannot help be aware of Pink-tober. It is perhaps the time when cause marketing is most visible – where companies partner with breast cancer charities to raise money for mutual benefit. Some are good, some are downright tacky. Diane Mapes over at Double Wammied wrote a great satire piece on what other cancers might look like if they were advertised the same way as breast cancer “What if people treated other cancers like they do breast cancer?” She helps to elucidate the issue of the over-sexualizing nature of to many breast cancer awareness campaigns.

    Although I do see that a lot of money is raised for good charities during this month of October – I am still bothered by the advertising. The I keep seeing on TV is the 5-hour energy fundraiser for Living Beyond Breast Cancer (LBBC). I’ve attended an online webinar by LBBC on Chemo brain that I found was very useful – so I can see that they do some good work. But I was bothered by the video clip because they didn’t show anyone young. I found that the ad didn’t speak to me in any way. So, I would support LBBC, but not by buying a 5-hour energy drink — but then I wouldn’t have bought the drink anyways.

    I was particularly incensed by the fracking company painting its ‘bits’ pink in a publicity stunt – ‘Doing Our Bit for the Cure‘. Who thought that was a good idea? I and many others in the blogosphere thought it was a spoof when we first read about it.  It is perhaps one of the more blantant examples of pinkwashing.

    What many of the awareness campaigns are doing is mostly sexualizing breast cancer, and that sucks. Frankly, breast cancer sucks. Over the years I have had friends diagnosed with other types of cancer. They were told “if you are going to have cancer, this is a good one to have”. No one ever told me that, and rightly so. If you are going to have cancer, breast cancer wouldn’t be my first choice!

    So, now I get the pleasure of living through October – having to be constantly reminded of the ugliness of breast cancer, and watching misguided ‘awareness’ campaigns that make it even harder for young women with breast cancer to have a positive self image. Here is another misguided campaign – I love boobies – it pretty much sends the message that those of us with breast cancer didn’t take care of ourselves – that we are now freaks because we no longer have boobies.

    As someone living with breast cancer, one of my biggest fears is how this is going effect my self-image – what I feel about my body. I haven’t had surgery yet – one of the scariest parts of surgery is worrying about how I’m going to feel afterwards. Not the physical part, but the emotional and mental part. In part, I think this is because I haven’t yet internalized the “my breast are killing me” idea. I’m still dealing with the “chemo made me sick”, rather than the “cancer made me sick”.

    So, although I’m in favour of fundraising to support various breast cancer charities – both those that support women living with and beyond breast cancer and those who are funding research, and I believe that there is such a thing as positive (win-win) cause marketing – I am annoyed by the partial messages – and the ad campaigns that are fine for healthy women, but make those of us living with breast cancer feel worse. There should be some kind of rule with this type of cause marketing … they should be talking to people living with the disease … awareness campaigns need to be more sensitive to the real struggles of the disease.

    Please stop telling me how much you love your boobies … cause I ain’t gonna have mine for much longer!

     

  • Fear and feeling better

    Yesterday, I was scared. I didn’t quite realize just how scared I was – and I couldn’t quite label it. I was scared enough that I cried. Then I went out for a bike ride. Biking always makes seems to help clear my head and allows me to figure out what I’m actually thinking.

    I realized on the bike ride that I had a fear of taxol chemo – almost a paralyzing fear – so bad that I was making plans to skip treatment. But I wasn’t sure if the fear was a rational fear or not. My fear is that the side effects that I’m experiencing will become permanent. With each additional treatment, I’m afraid that the damage will be irreversible. This is scaring me more than the fear of the cancer itself, and scaring me more than surgery (which isn’t scaring me anymore).

    Today I’m feeling a little calmer. I’ve been able to label my fear. I sent an email to my oncologist, telling him that I am scared. This will likely be a surprise, as I have always (almost always anyways) been strong during my appointments. But I just need some form of re-assurance. I need to hear that I’m over-reacting, that one more treatment won’t be the ‘one’ that causes irreversible damage.

    Somehow, today I’m not feeling nearly as panicked and scared as I was yesterday. I got a good night’s sleep. Actually, I’ve been sleeping better since the weekend. It has been cooler outside and we bought a new fan to cool the bedroom at night – which has made a huge difference. Unfortunately, the cooler weather isn’t expected to last – with forecast temps as high as 30 degrees C on Friday! So, back into summer temperatures. So, as some of the side effects get worse, others are fading as my body gets accustomed to the chemo. Today, I feel that I can manage one more treatment of taxol …

    I also woke up this morning to fewer eye brows and definite thinning of the eye lashes. I probably have less than 10 hairs on each brow now. However, my head has a nice layer of peach fuzz on it! The transitions in hair growth are somewhat amusing …

    2014-10-01 12.01.10

     

     

  • Reconstruction update

    Saw the plastic surgeon yesterday. I really liked her. This is good.

    We walked through the different surgeries and options. She validated that I’m a good candidate for DIEP/SIEP reconstruction based on physical exam. There is another test that she will order – a CT of the belly – to see whether or not I have big enough veins/vessels/something. The idea is that the CT will tell her if my vessels are big enough to allow for the surgery. So, this is good. Now I wait for news from the schedulers. I hope that December 17th still works – it is a challenge to schedule this surgery as it is an all day event for the plastic surgeon (8-10 hour surgery).

    The go/no-go on this surgery will be determined by scans done at the end of November – before the next surgery consult. At that point, scans are done to see just how well the chemo has worked. This will be the best information we have prior to surgery. Decisions will be made based upon these results.

    What was good was that she helped me to better understand the recovery and helped me feel more comfortable with both the surgery itself and the recovery from the surgery. She helped me to understand that regardless of whether radiation is required, the option that is likely to have the best outcome (both aesthetically and recovery wise) is to do the reconstruction immediately (so with the BMX). From her perspective, I am healthy. I have no comorbidities (that is, I don’t have other illnesses that would increase my risk of complications).

    I’m amused at how she looks at my body and wants to sculpt it – to reshape it – and casually mentions a revision surgery that involves lyposuctioning various extra fat bits to allow for a better cosmetic outcome. She comments that you don’t realize the fat is there until after the first surgery – you become more aware of different fat pouches after they remove the belly fold. I cannot help but feel pleased about this potential sculpting, but I’m also cautious about it. It is not surgery that I would choose to do in and of itself.

    Somehow, I am feeling a lot calmer about the surgery – a lot less anxious than I was before. It seems more like something that I can handle – I can get over it – I can recover from it.

    I feel a little calmer at the idea of looking down after the surgery and seeing myself – if they are able to spare the skin and nipples (they only do this if the various in-surgery biopsies are clear) – then when I look down it will look like me. My outside will be the same, the inside will be different – but it will still all be me. With less belly my hips will look huge .. instead of difficulty fitting shirts, I’ll have difficulty fitting pants … and yet, this doesn’t bother me. I can imagine myself looking sleeker – feeling good about my body.

    For the last week I’ve been replaying the diagnosis … I don’t know why, but my mind seems to be on replay. I keep going through the day in my head – the day everything changed. Today I’m able to see beyond chemo and even beyond surgery – and that is good.

    This decision feels right …

  • Some recent purchases …

    After a grumpy chemo session and leaving the ITA later than we planned, we decided to go out to dinner. I got the all clear for sushi last Monday, but we had not managed to have a sushi feast yet, so Monday after chemo I finally got my chance. Unfortunately, my favorite sushi/sashimi place isn’t open on Mondays … however, our second choice was pretty decent and met the craving.

    2014-09-22 18.11.34

     

    My other challenge was in taking supplements. I don’t take that many prescription pills anymore, but I “should” take a few supplements that might help with blood counts and neuropathy. I got a message from my oncologist office that there is no clinical evidence to suggest that the supplements actually make a difference but there is no harm in taking them either, and heck, if the placebo effect works then way not. The challenge is in taking them – I hate opening too many pill bottles at once, and I forget. So I went out and bought myself a fancy am/pm pill case. That way, I can fill in a weeks worth of morning and evening pills (the only regular prescriptions I take are either when I wake up or before I go to bed), and I split my supplements across the two, so I’m not taking too many pills at once. Here is hoping that my sorting them out once a week makes it easier for me to take them. I figure it will work for at least a week or two, while the idea is novel.

    2014-09-23 22.06.33

    I’m now 1/3 of the way through Paclitaxol and 2/3 of the way through chemo (yay) … weekly chemo is certain proving to be more mentally taxing than biweekly chemo. Paclitaxol is also a longer treatment (12-cycles) which is also proving to be more difficult to mentally grasp. With AC it was only 4-cycles, so easier to celebrate and count down as things completed. Paclitaxol just seems to be long journey.

     

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