BC Becky

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

Tag: fear

  • I almost didn’t go …

    I almost didn’t go …

    My proposal for a paper presentation at the Health Humanities Consortium Conference in Houston in March was accepted. When I was first accepted I was really excited about it. Then the plane tickets cost a little more than I’d like. I found myself doubting – do I really want to go? I found myself justifying all the reasons why I might not go.

    It was the celiac talking. It was me trying to avoid going out because the food might make me sick. I was deciding not to go because of fear – not for any really good reason.

    Yes, I’m nervous about the travel – air travel makes me anxious. I used to love it, now I worry that I’ll starve, and end up packing so much food that all I do is eat my way through the flight.

    I worry that I’ll be hungry during the conference. I even asked the conference organizer about food – which they haven’t planned yet. I got an awesome reply. They said they’d try – I cannot really ask for more.

    Once I realized the reason my waffling was fear talking, I decided to push through. I booked my flights, hotel, and registered for the conference. I’m committed now.

    I haven’t been sick since July. That is six months without accidentally consuming gluten. My blood anti-body levels are back to normal. From a celiac perspective, I am healthy.

    I have also tried to get past my fears on a local level. The other day I went out for fish tacos at my favourite local taco place. I only had one thing – fish tacos. I figured that if I tried anything else and got sick I wouldn’t know what made me sick. Next time I’ll try the carnitas (pulled pork) tacos. If I get sick then I know I need to stick to fish. I find that I need to take this one step at a time.

    I’ve also learned that if I’m going to branch out and try something – I might as well try a lot of it and really enjoy it. You see – if something is going to make me sick it doesn’t matter how much I eat. The level of sickness I experience is no different between a quarter teaspoon of flour and two cups of flour, so if something is going to make me sick I might as well get the most of it and really enjoy it – as it will likely be the last time I try it.

    Of course, now that I’ve decided to go the conference, I need to figure out my presentation. I’m working on my research now. I won’t get a huge amount of time to talk – so my presentation will need to be short and focused. I realize now that my past presentations have been a bit scattered – they have included snippets that were not relevant to the message – they may have been relevant to me personally, but they were not relevant to the overall storyline or the message I was trying to send. So now, I’m trying to figure out – what will be the theme for my short presentation?

    Feature image CC0 via Pexels.

  • My Buddha Belly

    It may sound dumb but one of my biggest worries about not getting reconstruction is that I’ll look funny. I’ll have a flat chest but a buddha belly. I’m more scared about the buddha belly than I am about the flat chest.

    I know my choice for surgery. I know I ‘want’ a double-mastectomy. Want is such an odd word here – need might be more appropriate. I know I do NOT want to be hacked up and left oddly deformed, which is what a breast sparing lumpectomy would do. I also know that I do not want radiation. My skin is so very sensitive, that the idea of radiation burns freaks me out. So, for me, the best option is the double-mastectomy.

    I also know that I do not want to go through 2-3 years of additional surgeries. When you are first diagnosed with breast cancer, the surgeon presents you with one bit of “good news”. That “good news” is that insurance is required to cover reconstruction. What they don’t tell you is that reconstruction is not easy. You are not reconstructing healthy breasts. It isn’t a simple “boob job”. Reconstruction happens after they remove parts (or all) of your breasts, and then use radiation treatments to make sure that the cancer is gone. So they begin reconstruction with less than ideal material – you are not starting with healthy breasts, you are starting with damaged breasts. The reconstruction process can (and usually does) involve several additional surgeries, all done under general anesthetic. Each brings in new risks of infection and complications.

    Maybe, if I had a small mass in one breast, I might opt for a simple cosmetic surgery that in essence evens out my breasts – maybe. But I don’t have that option. I have two areas of cancer in my left breast, one rather large … which doesn’t leave much to work with. Plus I have cancer in the right breast. So radiation would mean radiation on both sides – a double whammy.

    So, for me, the best possible outcome is a single surgery – double-mastectomy with nice clean matching / symmetric scars. No extra lumps and bumps, but nice and flat.

    That much I know. But what scares me is the buddha belly. I have a great body image right now. I’m happy with how I look. I’m pretty sure I’ll still be happy without breasts (they are trying to kill me after all). But the belly … now that might be the challenge. I will need a new identity – perhaps after BCBecky  (Breast Cancer Becky) I will become BBBecky (Buddha Belly Becky).  Maybe if I can find some pride in that identity, I can be happy with my new body image. [i’m laughing through my tears as i write this].

    What also scars me is metastasis. So far, all signs are that I do not have node involvement. We won’t know until after surgery. The first line of treatment for node involvement is chemo – which I’m already doing. The second line is radiation. So, if surgery finds node involvement, I may need radiation (ugh). Once that is determine, we then start to look beyond the breasts for spread. Women can live for years with metastatic disease (like 10 years). Metastatic disease is often treated with chemo that is designed to slow the spread of the disease, but the quality of life with sustaining chemo scars me. Chemo is hard. I can do it now, because I have hope that it means that when I’m done with chemo and surgery that the disease will be gone. I watch other women live with metastatic disease and go through chemo so that they can live a little longer, mostly to watch their children grow up. For them, the pain, the yuckiness of chemo is worth it. I don’t think I could do that. For the first time in my life, I truly appreciate what quality of life means. I cannot see making myself feel awful (chemo) just to live longer feeling awful the whole time. I do not have kids, I do not have a reason to want to hold on. And I could not bare to have Scott see me suffer for years just to live an unhappy life. Now, this isn’t something I need to worry about now. My prognosis doesn’t look like that … from all signs I do not have metastatic disease, but these are thoughts that I do have … and I promised myself when I started this blog that I would write these thoughts and share them, regardless of how difficult they might be read or write.

    So, here is to living a long healthy life as Buddha Belly Becky … whoever that may be!

  • A perfect morning

    It’s 8 am, infants are crying, jays are squawking, there is a fine mist as the park is covered in morning fog from the ocean. It is a perfect morning at Big Basin Redwoods State Park.

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    Scott has actually fallen back to sleep. This is my time, first thing in the morning. I crawl out of the tent at about 6:30am, my sore back making it impossible for me to sleep any longer. I make my morning cup of coffee and read my book in peace as the campground around me begins to awaken.

    I was worried about how I would sleep in the tent. It turns out I actually had one of the best nights sleep since the last round of chemo. The fresh air certainly helps, but also, with the  air mattress and thermarest combo that I use, I was actually able to sleep part of the night on my stomach, something that I haven’t done in a long time.

    As I write, the pretty jays are harassing each other around the campsite (you can see a couple in the tree on the right side of the picture). The make an awful noise and they are true pests. They eat the eggs and babies of the endangered marbled murrelets which nest in the area. The campsite is “crumb clean” and leaving any garbage or food out can get you an $850 fine! This year they started handing out fines and increasing the awareness campaign – but it may already be too late. There are a lot of these pesky Jays around.

    In addition to the jays, and screaming children, you can hear the occasional woodpecker pecking at nearby trees.

    What we didn’t see last night, a pleasant surprise, was raccoons. Last time we camped up here they were real pests (if you leave your car door unlatched, they will open it! Fortunately, we had our dinner before dusk and all food was safely stored before racoon time.

    Next to the picnic table is a ring of ancient redwoods (a fairy circle). The ring is formed when an old tree dies and feeds a series of new growth. These younger trees are likely over 1000 years old themselves.  It is pure magic and exactly what I needed in this moment.

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    And of course I need to include the requisite morning selfie.

  • The transformative power of a bike ride

    One of the hardest things I’ve done lately, was to get out of bed after my afternoon nap, and get on my bike. It wasn’t that I didn’t have the energy for it – I did. I’m in a strong phase right now. It was that I was sad. And not the type of sad that happens when I have a needed breakdown, but the kind of sad that looks a lot like depression – and that scares me.

    So, I dragged my ass out of bed and had a bowl of ice cream. I’m allowed comfort foods whenever I want them! And when you are sad, they help a little … plus I knew I would need the energy, cause if I was going to get off my ass and go for a bike ride I needed to ensure my body was fueled before I left.

    So, I did it. I got changed and hopped on my road bike. For the first half hour of riding, I cried. My nose ran – most annoying side effect of chemo hair loss is that you lose the hair in your nose so your nose runs a lot sooner when you cry. I allowed myself to cry. I contemplated anti-depressant medication. I know that at some point I will probably need it, but I want to avoid it if I can. There are side effects to that as well.

    About a half hour into my ride something changed – the endorphins kicked in – I suddenly started to see the beauty around me. I stopped to take this picture as the bird seem to be posing just for me.

    2014-07-30 19.10.26 HDRThe bike ride transformed me – from sad-Becky back into warrior-Becky. For the remainder of the ride I worked out the important arguments in a letter to the Editor for the New York Times relating to my recent blog post on bilateral mastectomies, that I plan to write (hopefully later this evening). Thank-you for those who have encouraged me to write something more formal.

    I cannot say that I am no longer sad – I am just not dysfunctionally sad. I’ve moved past that part and can now start to pull my thoughts back together into actions. I hope to get out for another ride first thing tomorrow morning before it gets hot and sunny (since I cannot swim tomorrow due to low blood counts).

  • Bilateral Mastectomies

    A friend sent me an email with a recent article in the New York Times about the prevalence of bilateral mastectomies entitled “The Wrong Approach to Breast Cancer“.

    I read the article with much interest but also much distain. There are several issues that are not addressed in the article, but it also highlights some important trends and issues in breast cancer treatment. Let me start by sharing a couple of acronyms that will make this discussion easier – BMX stands for bilateral mastectomy, and PMX stands for prophylactic (i.e. preventative) mastectomy.

    I also need to point out that the discussion is not about women with be BRCA1/BRCA2 breast cancer genes. Some useful statistics: 12% of women in the general population develop breast cancer, of these, up to 5-10% (yes hazy statistic there) MAY have an abnormal BRCA gene. For this small percentage of women, the likelihood of breast (80%+) and ovarian (25%+) cancers is huge. Prophylactic surgery for these women brings peace of mind.

    The NYTimes article highlights that PMX is unnecessary as it does not improve survival rates. The article highlights the over-use of this choice. What the article doesn’t say is that one of the reasons so many women choose PMX is that they are sold on the ease of reconstruction. In the US, if a women has breast cancer, insurance is required to pay not only for treatments but also for reconstruction (I was told this at my very first surgical visit the DAY I was told I had cancer). A women from the UK commented that she was required to see a psychiatrist because she did not want reconstruction. The pressure to reconstruct is huge, but also, the way in which is it is sold is also misleading. The potential complications are understated.

    The NYTimes article talks about statistics but does not take into account mental health. The far majority of breast cancers occur in only one breast (I’m an oddity). In many cases, women have the first breast removed, but then choose the PMX for the second breast. In some cases this is because of fear of cancer returning, as stated in the article, but in other cases it is because the women have difficulty living lopsided. The lack of symmetry becomes a constant nagging reminder of the cancer. It can be too much for some women. There are many women who are very happy about their choice of PMX and reconstruction, and many women who are happy about their choice for PMX and no reconstruction. What concerns me about this article is that it research stated like this gives insurance companies a reason to NOT do the surgery, when it may be in the best interest of the individual. Mental health and quality of live after surgery are two variables that are not considered.

    I’m concerned for women who have PMX because they are sold on the ease of reconstruction, but I’m also concerned about potentially denying PMX for women whose quality of life will be significantly improved by it.

    My personal case is different. I don’t qualify as a statistic in most studies because the nature of bilateral disease is not understood, but also because it is not very common. I have multi-focal cancers in my left breast (two tumors in different parts of the breast – the first is the one I felt (invasive ductal carcinoma, IDC grade 3 about 4cm), the second is DCIS (stage 0 non-invasive). In my right breast I have about a 2cm mass IDC grade 2 (it could not be felt and was found by a very good radiologist). So for some unknown reason my body suddenly started to grow breast cancer – and it did it quickly in multiple places. For me, the right choice is a BMX. It is not prophylactic, as I am not doing it to prevent a cancer from occurring. The cancer is already there.

    I could have a lumpectomy to remove the three areas – but then I would need radiation treatments (I might still need them). I would need to have mammograms and maybe even breast MRIs every 6 months for the rest of my life. I would need to go through biopsies every time they found something suspicious, and any shadow would be considered suspicious because of my history. I would also be so very oddly deformed, with both breasts being different sizes and shapes. I would have a constant battle with body image. For me, this would lead to a terrible quality of life. I don’t want to live having to constantly worry about how I looked or when the next doctors appointment would be. It is bad enough to go through that during active treatment, I don’t want that to be my life after treatment.

    I love the idea of being flat and having choices. What I hope for most is that my breast surgeon does a good job and I have nice clean scars. Then I can choose to wear foobs if I want an outfit to look a certain way, but I can also choose to not wear anything on a hot sunny day. I love the idea of a bra free life! To be honest, I rarely wear one now – but I’m finding that with all the insults to my breasts (biopsies and chemo) that I need to start wearing one more often, as they need to be supported.

    What I really want to say about the NY Times article is that breast cancer treatment is an individual choice. Statistics can be useful in helping us make a choice, but the right choice is an individual one. For some women a PBX is the right choice, even if there is no statistical advantage to it, for others it is not. I get a bit insulted when the article assumes that women are making choices that are “not truly necessary” and assume that the doctor knows best, when the doctor isn’t the one having to live with the decision.

  • Meltdown

    Last night I allowed myself to go down an emotional spiral into an all out meltdown. I was already feeling a little sad and then took an MJ pill, and started reading the book Wild. The first several chapters of the book go through the authors feelings as she supports her mother’s sudden death from Lung Cancer (she died three months after diagnosis). The combination was NOT good given how I was already feeling sad.

    I started feeling a little ‘out-of-body’ (that’d be the MJ), which made me feel like ‘this is not me’. I also started feeling really sad – mostly what was replaying in my mind was Scott watching me get sick and die – and I did not want that for him. The emotions were rather extreme. This is really the first time I had allowed myself to think about the option of myself as dieing.

    I also found myself afraid. I don’t want to feel sick. I’m afraid about how the blood low will make me feel. I am still struggling with nausea – although I have good meds to keep that at bay. I was hoping to ween off of them, but that doesn’t seem to be working yet.

    I am having trouble visualizing my next infusion. It will require remarkable strength to go in a second time. The first time I could go in with curiosity. I did not know how I would react. Next time, I’m going in knowing that I will have crummy days. I also go in with the knowledge that it is cumulative – so I will feel worse.

    I also had trouble last night visualizing getting my head shaved. I have an appointment to do this on Thursday but suddenly the idea freaks me out. I have no real attachment to my hair – but suddenly I know that people know visually that I have cancer. I will ‘look’ the part.  I cannot see myself as I will look walking out of the salon. I realized that I need to decide what I’m going to wear on my head when I leave … I need to pick a scarf …

    So last night, I wasn’t feeling all that strong. I was just feeling sad. I’m highly aware of the effects of depression on my mind – and for the first time I felt that depression. I don’t think I’ll be trying out the MJ anytime again soon (or at least not when I am already feeling sad) – as I don’t need anything that heightens depressing thoughts – I need to stay strong and positive.

    Fortunately, I am feeling better this morning. I’m now feeling the low that I was afraid I would be feeling. I was a little dehydrated – didn’t drink enough yesterday – which I shall work harder on resolving today. The nurse in ER on Saturday recommended pedialyte power – which actually tastes better than gatorade (she found me some samples) – but it is expensive ($1 per package – and I could drink 2-3 per day) … so will try it out on especially bad days (and chemo days) and see if I can score myself free samples somewhere in the cancer center when I’m at Stanford.

     

  • Joining the cancer blogosphere

    I have been blogging for a few weeks now, but I have been very hesitant to read other people’s cancer blogs. I’ve been hesitant to reach out to too many others who are going through similar experiences to mine. In part, this is a form a denial, in part it is a form of fear.

    I have strong online relationships. I am part of several online communities where I find strength and much needed support. But, to join a cancer community means to admit that I have cancer – but there is more to it than that – it is the fear of joining a community and then losing people in that community. I’m OK with admitting I have cancer, but I’m not OK with admitting that it is something that might one day kill me. I’m afraid that if I develop solid friendships with others who have cancer, that I’ll lose them. I don’t want to have to deal with the death of a good friend – and so, I hesitate. I hesitate to reach out too much to others who are also going through this experience – not because I don’t want to meet these people or get to know them – just that I don’t want to get to know them and then lose them.

    But I also realize that I need them. I need to read about others experiences. I need to learn from them. I also need to share my experiences, so that others can learn from me. It is this need that is driving me to participate in the online communities (and face-to-face support groups as well), but I must admit, that I do it with hesitation and a bit of fear. Afraid to get too close to anyone who I might lose.

  • Knowing what to expect

    “In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

    As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

    Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

    The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

    Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

    After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

    Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

    The two options look something like this:

    • option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
    • option 2:  docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC

    They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

    After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.

    Photo Jun 23, 12 39 23 PM Photo Jun 23, 12 36 07 PM Photo Jun 23, 12 36 49 PM

     

  • A tough day

    I didn’t sleep well last night, and I know that sleep directly affects how I feel the next day. Reality is starting to settle in, but also fear. With every pain in my body I’m wondering if it is spread. Does the blister on my hand mean anything? How about that pain in my breast? The pain (it isn’t really a pain, more an awareness of feeling) in the breast is especially concerning. I find myself wondering if it is reaching the chest wall? But the logical part of my brain is saying, it could just be the biopsy healing – after all they did stick rather large needles in to extract core samples.

    One lesson I have is to not tell anyone new at the end of the night. Telling people is hard – there are reactions and conversations that accompany the news. Doing so just before bed is apt to disrupt my sleep – but the late day news of the second biopsy is just as much to blame I’m sure. Mostly I’m pointing people to my blog, just so I don’t have to keep saying it. There is an emotional toll that occurs on both sides. Some people want to reach out and talk, but I’m not there yet. I cannot talk about it. I think that when I have a treatment plan, and enough information to actually have something to talk about, then I might be able to talk about it.

    One of the thoughts on my mind is my outlook, and how much planning for the future do I do? I cannot schedule anything without a treatment plan, and I have no clue how sick I will be. I find myself thinking, “I need to do this before I get sick”, as my mind is telling me that the treatment is what will make me sick rather than the disease that I have now. When I talk about the future, I’m thinking about how much do I set things up so that I can pick up where I left it, or that it keeps going while I’m away, versus how much do I just let things go.

    I’ve submitted the paperwork to put my studies on hold starting September for a year. My project wasn’t progressing at all as planned, and a year away will make it unrecoverable. I’m not actually sad about that. I’m looking at what things I can do in the next few months to make the most of the data I already have – favouring the creation of journal articles for publication over any thoughts of constructing a dissertation. I’m more excited about the opportunity to start again with a new project (perhaps an autoethnography based upon this blog – looking at the role blogs and social media play in the mental health of cancer patients and their families). I was filling in something yesterday that had my credentials. I’m a PhD Candidate, which is written as PhD(c). I guess that is the credential that will remain after my name for at least the next couple of years. I remind myself that getting this far has been a huge accomplishment, and is worth celebrating.

     

  • What should I hope for?

    While I await the biopsy results, and other test results, I find myself wondering – what should I be hoping for? If you are going to have breast cancer, the next question is, what kind of breast cancer? The problem is, I really don’t want to do a lot of reading about the different types of breast cancer right now. I only want to know about one type – the best type to have, whatever that is, so that I can hope that is what I have. But I don’t know enough about breast cancer to have even the foggiest idea of what I should be hoping for.

    One thing I keep hoping is that it doesn’t spread to my lymph-nodes. I know that spread is bad – so I hope that it is localized. Of course, anytime I feel the slightest bit of anything on the outer edges of my breast I get concerned. Am I feeling it spread to my lymph-nodes? Are things moving along fast enough?

    Now that I have told my family, I see they are going through the denial phase as well. They are saying, ‘the results could still come back negative’. Perhaps that is true, and nothing is confirmed until the biopsy results come back, but that doctors were pretty clear. I’ve had three different specialists say that ‘they would be surprised if it isn’t breast cancer’. I think I stopped that line of thinking when I saw that they changed my current conditions status on my health record. My current health conditions now list ‘breast cancer’. Seeing that in writing, at that moment, was pretty emotional. I think it was then that the reality set in.

    The radiologist reports say ‘highly suggestive of malignancy’ (BI-RADS 5) on the left breast and ‘suspicious abnormality’ on the right breast. The BI-RADS classification of 5 has a greater than 98% chance of malignancy. And so, although others are going through denial, I think I am ready to move to the next phase – bargaining. So, now I am asking myself, what should I be hoping for?

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