BC Becky

Never Thought I’d Want to be a Breast Cancer Survivor

Author: Becky

  • 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!

  • The evolution of early detection

    I watched this pretty cool TED talk this morning. Boy wouldn’t it be nice if detecting breast cancer was as easy as a blood test that could be done as part of your annual physical. I do wonder if it would still detect it sooner than self-exams in young women – in that, I had a physical in January with no signs of disease, but had disease in June. So, would a test like the one in the video have caught the cancer a little sooner or would it just have confirmed that I had no disease in January, but I had disease in June?

    I wonder how it might be used in the future for those of us with breast cancer, to confirm NED (no evidence of disease) after treatment? Would that simple test mean that more people choose lumpectomies? Currently, if you have lumpectomy, you are considered high risk for re-occurrence, which means that you subjected to more frequent screening (more frequent mammograms and breast MRIs). If future screening was a simple blood test, would that change the decision as to which surgery to have?

    I like that the company creating it is allowing the platform to be open source, so that others can work with it and improve upon it. It also helps to make sure that the platform is affordable.

    I think for me, the biggest thing such a test would provide is peace of mind. The ability to have a blood test ever 3-month for the first five years after treatment (when re-occurrence is at its highest) would go a long way to providing peace of mind.

     

     

  • Breast cancer awareness isn’t about pink ribbons

    Until I was diagnosed with breast cancer, I was not aware of it! October came and went with lots of pink ribbons, pink running shoes, TV commercials about various breast cancer charities, dumb games on Facebook, and requests for donations to some unknown charity with breast cancer in the title at the grocery store. None of these made me any more ‘aware’ of breast cancer. Frankly, I was pretty happy being un-aware of breast cancer. So, I’m not sure I really want people to be aware of it.

    Now, when I was diagnosed with breast cancer, I suddenly had to become aware. I had learn what the diagnosis meant, what the different pathologies were for breast cancer, what the common treatments were, and how all this might apply to my particular form of breast cancer. I had to learn a whole new language.

    Now, if you are a regular reader of my blog or the blogs of many other amazing women who are living with breast cancer (e.g. Booby and the Beast, Nancy’s Point, Stupid Dumb Breast Cancer), then you are probably pretty aware of what it means to have breast cancer. I think blogs are probably one of the best educational tools to provide ‘awareness’ of what breast cancer is all about. If you want a true dose of awareness, take a read of Jen’s post “Around the Web – Mets Edition” – many of the stats around metastatic disease and young women with breast cancer are quite sobering.

    Breast cancer awareness campaigns do bring in a lot of money for research, but they also cause a lot of well intentioned people to waste their money by donating to questionable causes that don’t further research or help support those with breast cancer. And sometimes they are just PR stunts and do nothing to support breast cancer research or those living with breast cancer. If your going to donate money to support breast cancer research or breast cancer treatment, I recommend that rather than adding a dollar to your grocery bill or buying a pink product, you make a targeted donation to a charity that makes a difference in a way that matters to you. If you care about research into metastatic disease, then donate to metavivor.org, if you care about prevention, donate to the breastcancerfund.org, if you want to support women who have cancer in the local community look to local organizations like Bay Area Cancer Connections – or if you want to support me while supporting breast cancer, you can donate to my Avon Walk.

     

  • 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 …

     

  • Peak Hike

    Yesterday, Scott and I got up early, drove for an hour and half and participated in the Peak Hike for Prevention (a fundraiser for the Breast Cancer Fund). I honestly wasn’t sure I was going to be  able to do it.

    I was definitely slow, but I made it (12.21km and 3h47min, 20,000 steps, and elevation change of 479m). The hike took place at Mount Tamalplais, north of San Francisco. A tiny corner of the hike (near the top) crossed into the Muir Woods National Monument. We were lucky that it was foggy for most of the time we were climbing up, and the sun snuck out while we were at the top.

    Screen Shot 2014-10-12 at 8.12.55

    We hiked with a group that I met through one of my friends from support group. The group, Em the Gem, has been doing the peak hike since it started 19 years ago. They walk in memory of Emily (the sister of the team captain, who passed away just before the first hike). When they had t-shirts made the first year, the printer misspelled “honor” as “honer”, and ever since, the team has also been known as “The Honer Family”.

    I find that I enjoy events like this because they push me to go beyond what I would have done on my own. Walking with Scott, we might have walked for a couple of hours, but I likely would have turned around after about an hour. Here I was encouraged to keep walking. I was slow, but I wasn’t the slowest. I was encouraged by the tenacity of others who were clearly pushing beyond their comfort zones.

    As I plodded along, I did stop now and then and take in the scenery. It was a beautiful day for a hike. We’ll see, maybe next year I’ll do the 11-mile hike.

     

  • 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!

     

  • Oh where has my mind gone?

    In one moment, I feel like I’m thinking clearly. I’m reading and reflecting. I feel connected.

    In the next moment, I realize just how unconnected my mind is. This chemo brain is infuriating! I ventured out today – unable to drive because of the cognitive dissonance that is getting worse with each dose of taxel – I took the VTA (train) to the mall to buy a ridiculous amount of chocolate. I treated myself to a 30-minute reflexology foot massage (hoping that it might help with the neuropathy). What I failed to do was turn off the stove when I made breakfast this morning (I’m perfecting the poach egg – just need to learn to turn the stove off after taking the egg out of the pot). Fortunately, I didn’t do much more than burn the bottom of a pot.

    I have several blogs posts in the works. In the times when I’m thinking clearly, I reflect and I write. I seem to be OK when I’m sitting in front of my computer – with that limited field of vision. But when I step outside to walk, visual processing is a challenge. I find myself looking down at the ground as I walk, mostly because I cannot process what I’m seeing when I look up. It is confusing. My vision is also getting worse. It doesn’t help that my vision was all screwed up from the cataract surgeries even before the cancer – but the chemo is changing my vision, so my glasses aren’t as clear – and my eyes without my glasses aren’t working well. The mono-vision idea made sense when my brain was working well – it is a challenge when my brain isn’t functioning properly.

    So looking forward to being done with chemo!

  • One more chemo day …

    So I’ve survived one more chemo day … I type this as the monitor beeps saying I’m done … with any luck this will be my last …

    Had some fun taking pictures by my tree before the infusion.

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    I won’t know until next Monday (the 13 – which also happens to be Canadian Thanksgiving) – what is happening with my chemo. I have an MRI on Thursday night and various doctors appointments on Monday. If the tumors are gone (or small enough), then we’ll stop chemo and get ready for surgery. If the tumors are still present on the MRI – or haven’t shrunk as much as we had hoped – then I’ll continue with chemo for another six weeks (although I may see if I can take a week off in order to give my blood counts a fighting chance of rebounding). My  red blood counts (RGB/hematocrit) are higher than they were last week (still low, but better). My white counts are still trending downwards.

    So another week of appointments. I’m going to try to take it easy this week – listening to my body – and doing whatever I feel like doing. Pretty much like I have been doing since starting chemo with a little more emphasis on resting.

    One side effect that I’m now having is pain under my nails on my thumbs and first two fingers. It isn’t painful when I do nothing, but when I use my fingers it hurts (even when typing I’m aware of the pain). The finger tips also are sensitive to the heat – in particular the heat of the gas burners on the stove. So I’m going to try to shift to meals made in the oven. If anyone has any recommendations for favorite casseroles, please post recipes or links in the comments. Thanks.

     

  • The generosity of strangers …

    As many of you know, I’m an avid cyclist. Cycling has been one of the things that kept me sane though AC chemo. It is also one of the things I’ve struggled with on Taxol. One of the unfortunately side effects of Taxol is cognitive disassociation – where my brain cannot process visual queues as fast as it normally does. This has meant that I’ve had to stop driving. Until last cycle I was able to drive a couple of days a week. Now I’m not comfortable driving at all. In addition to not driving, I’ve also been challenged with biking. The biggest concern is that my balance isn’t what it used to be. So in addition to not processing the visual cues, I’m also not as solidly balanced on my bike. So – regretfully, I’ve come to a point where I could no longer ride any of my bikes.

    Fortunately, there is the internet … and I’m connected to various communities. I posted a plea on a Facebook recumbent riders group but also on the forums at BentRiderOnline.com. One of the folks at ‘bent rider online came to my rescue (thanks Dave!). This afternoon, Dave dropped off his Trident Tadpole Trike for me to borrow while I’m on chemo and recovering from surgery (when I cannot put any weight on my arms). Tonight I got a chance to take it out for spin! It was a hoot to ride – I’m so happy to be back on a bike again. Unfortunately, the front wheels are slightly too far apart, such that it doesn’t easily fit through the front door. This means that I can only ride when Scott is home to bring the bike in and out for me (I’m not currently strong enough to lift it, although that will change once I stop chemo and regain some of my strength). For now, I’m just happy to be able to get out and ride a few days a week (whenever I can convince Scott to come home early enough from work to sneak in a ride before dark!).

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