A few months ago, I discovered a parenting podcast, The Longest Shortest Time (LST).  I really enjoy this podcast, but even more so I enjoy the Facebook group to which many of its listeners belong.  There, moms post tons of great questions and even better feedback – responses to those questions that aren’t judgmental, that are really helpful and really supportive.

Yesterday, one of the moms posted a picture of herself with her child, explaining that she had just had a photo session of her and her baby, wanting to capture memories of their breastfeeding before she had a prophylactic mastectomy.  This spurred a few of us to disclose our BRCA+ status, and before we knew it, two of us had decided to create a LST spin-off group – LST BRCA+ Mamas.

You might be wondering, do we need a Facebook group just for moms who are BRCA+, or, why do we need such a group?  For me, it’s because a lot of my concerns, issues, and fears about being BRCA+ are wrapped up in being a mom.  I was a lot less fearful of BRCA before I was a parent.  But now I have a lot more to worry about it – is my son BRCA+?  Will I have to have more surgery, and will he have to take care of me if I get cancer?  Will I die and leave him motherless at a young age?  When I think about BRCA now (as opposed to before I had a child), I think primarily about two things – the tragedy that is my body, and how this might all impact my son at some unknown future date.

I’m pretty sure I wrote about this before, but it might bear repeating – one of the major reasons I didn’t breastfeed my son was because I knew I was going to have a mastectomy one day, and I  didn’t want to have any emotional attachment to my breasts.  I didn’t want to see them as something that linked me and my baby.

These are issues quite specific to moms who are BRCA+.  So we hope you’ll join us for conversation at LST BRCA+ Mamas – a closed, private space for positive support and open discussion about the challenges of being a mutant mom.

The Year of Our Pancreases

I began this post on January 7.  I’m finishing it four months later.  So much for “BRCA in real time.”

Every so often, a few women from my local FORCE group get together informally for coffee and to chat.  Usually we talk about our dissatisfaction with our sex lives in our post-menopause and/or post-mastectomy world.  It’s not quite as depressing as it sounds since when you’re with a group of women who are all experiencing it, you can approach it with some humor and also get a little bit of advice to boot.

Anyway, at our get together in December, I said that I was thankful that I’d had a full procedure-less year.  No surgeries, no BRCA-related anything except for a melanoma screening, which seemed hardly more thorough than the way my 4yo son sometimes glances over at me while I’m getting dressed in the morning and he’s sitting in our bed watching Bubble Guppies.  I had even skipped my breast exam, which I was feeling a bit regretful about.  But 2015, I announced, I was getting back on the BRCA wagon.  And I was planning to start with my pancreas.

As a BRCA2+ family, our pancreai (?) pancreases (?) pancreum (?) are at particular risk, especially for men.  My father’s brother died from pancreatic cancer before he turned 60.  My father is extremely vigilant, getting an endoscopy each year, because pancreatic cancer (much like ovarian cancer) is rarely found at a stage when it is still treatable.  But recently there has been more conversation about the need for BRCA2+ women to have pancreatic screening as well. When we talk about BRCA-related cancers, we often refer only to breast and ovarian, but pancreatic is the third most common. So I made an appointment with a gastroenterologist who specializes in pancreatic cancer.  In fact, Dr. Brand specializes in the genetics of  pancreatic cancer, has his own genetic counselor on staff, and conducts his own research study on people with BRCA mutations as they are screened through his office (before I left his office, I gave him a blood sample and completed a survey so that my data could be used in his study).  Here’s a great video of him talking about the basics of genetics, pancreatic cancer, and screening.

I made the appointment in January, and I had the appointment in April.  It was incredibly informative, and I hope that repeating some of this information is helpful to readers.  Of course, this is information that my doctor gave to me based on my history, and it should not be taken as medical advice in any way.

Dr. Brand explained that the most recent data shows that women with a BCRA2 mutation are at about a 2-3% increased risk of pancreatic cancer above the general population of women.  His data, based on his own patients, shows that if you have a second-degree relative who has had pancreatic cancer, then the risk is about 15% – this is regardless of genetic mutation.  This is why my father has endoscopic ultrasound every year – because his brother had pancreatic cancer.  Dr. Brand says that a person can wait to begin screening until ten years before the age of diagnosis of the family member.  So, since my uncle was 58 when he was diagnosed, I can wait until I am 48 to begin screening (ten more years).  But even Dr. Brand was optimistic that there could be better options by that time.  He also says that in the meantime, some good options for prevention include weight loss, increased activity, baby aspirin, and 2000 IUs of Vitamin D daily.  I’ve started the Vitamin D.

I left feeling pretty positive about this appointment — for myself.  But as I think I’ve written about before, last summer my husband’s father was diagnosed with pancreatic cancer.  During a CT scan for a kidney stone, the doctors saw a small shadow in the corner of the screen, which led them to a large mass on his pancreas.  They were able to remove the mass, and his father underwent chemotherapy for Stage 2 pancreatic cancer.  This is rather miraculous – pancreatic cancer is rarely found at this early stage.  My father-in-law sailed through chemo and is doing quite well.  But I’m nonetheless extremely worried about my husband, who has a BRCA1 mutation inherited from his mother and is now at risk of pancreatic cancer from his father.

This genetic cancer crap never ends.

My husband is supposed to have an appointment with Dr. Brand before the end of this year – it’s the year of his pancreas as well…. the year of our pancreai or pancreases or whatever.  I just wish that instead of spending so much time trying to figure out to pluralize the problems that multiple people have in my family, we could just figure out how to eradicate them all together.

Standing up to the Elephant in the Room

I haven’t written in a while – I’ve just been too busy with life, and also unfortunately with death.  As I wrote a few months ago, my BRCA1+ mother-in-law was diagnosed with stage IV breast cancer that had metastasized to her bones and liver.  She passed away on Mother’s Day.

I’ve been thinking a lot about what I want to write about this from my various positions in relation to her – my love for her as a daughter-in-law, my sadness for my husband and my son, my fear as a BRCA2+ woman watching someone close to me die from the disease that might eventually get me, too. While I think about how I want to write about this myself (which I will do eventually), I wanted to post a tribute that her cousin, Susie, read at her funeral, which was a week ago today.  Susie is an outreach coordinator for FORCE in Boston – she is also BRCA1+ and has had breast and fallopian cancer – I can’t imagine what it was like for her to watch her cousin disappear before her eyes.

I’m posting this because it’s not a typical eulogy.  It’s a BRCA eulogy – there’s really no other way to describe it.  I know anyone who reads this blog will hear in this tribute their own story or the story of a family member who has passed away, because we have all spent various parts of our lives trying to break free from the crushing weight of this elephant.  I’m so proud of Susie for standing up at Sheila’s funeral – in front of probably 200 people – and talking about this.

Here’s what she wrote:

I don’t have to tell you how much Sheila adored her family and how much we adored her.

I don’t have to tell you about Sheila’s endless capacity for giving – of her love, her time, her energy, her skills, her Mandel bread.

I don’t have to tell you how important her friends and her community were to her.

These are things that all of you know already.

What I want to say might be unusual for a memorial service. But I feel like I need to talk about the elephant in the room: Cancer.

And no, I’m not going to talk about what cancer did to Sheila’s body. Or make a speech about why it is important to donate to cancer research.

When I started to look back at Sheila’s life, I realized that because of our family’s genetic predisposition to cancer, Sheila had to stare cancer in the face from the time she was very young, maybe 7 years old, and our grandmother was diagnosed with breast cancer. As children, Sheila and her brother Carl lived with their parents and our grandparents in the same house. Even back in the 50s when nobody talked about cancer, there was no hiding it from the kids in that situation. From that point until the moment she drew her last breath, whether she was conscious of it or not, Sheila’s life and her spirit were shaped by cancer.

What I want you all to remember about Sheila and that elephant called cancer is that despite living under its shadow almost continuously for over 60 years, Sheila never let the elephant crush her spirit.

She was always amazingly graceful and grateful; warm, funny and strong. Over the years, when family members or close friends were in the grips of cancer, she was our rock, schlepping with us to doctors appointments, holding our hands during treatments, making sure we were ok and well fed after treatments or surgeries. Most importantly, she never allowed us to give in to self-pity for more than a few minutes. And that wasn’t easy, especially with me as she reminded me only two weeks ago – pointing at me with her impeccably polished fingernails – and declaring that I am the biggest crybaby in a family known for its crybabies.

Sheila never wanted to be defined by cancer and based on the wonderful memories that so many of you have shared over the past few days, she absolutely succeeded.

Standing here today, I know that Sheila would not want us to let cancer crush our spirits. Forgive me for borrowing a phrase but if she could stand up to cancer for 60 years without losing the incredibly positive spirit that we all know and love, then so can those of us who love her.  Thanks.


Menopause and Cognitive Decline

Since I had the hysterectomy/BSO in July 2013, I have definitely felt side effects of cognitive decline.  I describe these as losing my train of thought, basic forgetfulness and confusion, lower attention span, and most problematic – word finding (I cannot remember a word when I need it, although it might come to me days later; I demonstrate this physically sometimes by grabbing at air, as if the word is hanging there and I just need to catch it).

In the last few months, I have felt like this decline has accelerated.  It’s become embarrassing in social situations and even worse in professional situations (like the other day when I nearly sent an email in which I spelled the word “nutrition” as n-u-t-r-i-c-i-a-n, and I really had to stare at it for a few seconds trying to figure out if that was correct).  These days I have to read every email I write at least five times before I send it, I am nervous about any meeting I attend because I don’t always fully understand what’s being discussed (mostly because I can’t pay attention the way I used to or I forget that something was already said five minutes earlier), and I worry that my students can tell that I’m not confident when I enter the classroom.  When I talk to other women about this, they agree – after having undergone surgical menopause or having gone through natural menopause, they feel DUMBER (yes, I know that’s not a word, but it so aptly describes what I feel both by showing and telling).  Despite this, all doctors I’ve spoken with repeat that there is no medical evidence to demonstrate that cognitive decline is an actual side effect of surgical menopause in women my age.

The largest study of cognition in women who have undergone menopause was one done in France over ten years ago.  Women age 65 underwent several tests and it was determined that, yes ideedy – they did experience cognitive decline, and the earlier they started menopause, the worse this decline was after age 65.  This report from May of this year looks at that study again to look specifically at dementia.

There are a few things about this newer report that I am disturbed by.  One, of course, is confirmation that after 65, I will certainly experience cognitive decline, even if what I’m experiencing now is jut “all in my head” or is related to something else entirely (my PCP has reduced my dosage of Topamax, which I take for migraine prophylaxis; she feels this could help since among its main side effects are speech, language, and memory problems).

What I’m even more concerned by is that this study is old already, and it’s a study of women who for the most part went through menopause naturally – thus, they are 65 years old.  There is virtually no data on cognitive side effects for women who go through surgical menopause, particularly at a young age:

in terms of surgical menopause, these results suggest that further caution should be used when recommending ovariectomy [oophorectomy] in younger women, and the potential long-term effects on cognitive function are a component of the risk/benefit ratio associated with such surgery

So we know the potential long-term effects, but what about short-term effects?   This sort of study needs to be done as well.  At a recent meeting of my local FORCE chapter, a gynecologist who specializes in middle-aged women and menopause management explained that women, especially those who are under the age of 40 (like me) who undergo surgical menopause are at much higher risk for bone problems and heart disease.  There is research to demonstrate this, she said.  But when I asked about cognitive side effects, she admitted that while she hears from many women who visit her that they feel they are experiencing cognitive decline, she explained that there really is no data to support that this is actually the case.

In fact, she went so far as to imply that this feeling I’m having is psychosomatic.  Here was her analogy.  Most women don’t remember the hundreds of times in their life that they get their period.  But any woman remembers the time she got her period when she was at the beach and it nearly ruined her white swimsuit.  After that, any time she’s at the beach, she’s slightly nervous about getting her period, even though she’d always had that risk before that one time it actually happened.  So what this doctor was saying was that perhaps I was experiencing cognitive decline before I had the hysterectomy, and I am just associating it with the hysterectomy/BSO because that is when I started to really notice it.

Nope.  Not buying it.  I’m sorry if it sounds arrogant, but I am a pretty high functioning intellectual person.  I am a big ditz when it comes to a lot of stuff – ask my husband; he probably has a blog about it hidden somewhere.  But I have a PhD in the teaching of writing, which essentially means, I have a the highest degree you can obtain in THINKING and COMMUNICATING WHAT I THINK and teaching others how to do that, too.  I do research, I read complex books and complicated articles, I present my work at conferences, I teach lots of students and grade papers, I run two programs at a large state university, one that requires me to train other faculty in how to teach writing and the other that requires me to be responsible for over 3000 students and their writing curriculum.  I know when something’s amuck in my brain, when it’s time to take a break, when I need a chocolatey snack or a nap.  And I know that I didn’t get DUMBER until after I had that surgery.

What bothers me the most about this is that the doctor said she hears this all the time!  But there’s no data to prove it’s true, so therefore it must be in our heads?  More hysterical women.  Instead, how about collecting some data?  How about taking some interviews from these women?  How about replicating the French survey from ten years ago but doing it on a population of women who’ve undergone surgical menopause before the age of 40?  There are many of us – not just BRCA positives, but lots of women who’ve had hysterectomy/BSOs for endometriosis and a slue of other reasons.

When I was making my choices about preventative surgeries, there was obviously a lot to weigh.  My doctors told me what I might face once I underwent the removal of my ovaries – higher risk of heart disease, bone loss, night sweats, hot flashes, mood swings, hair loss, weight gain.  I didn’t blink an eye at any of these knowing they’d be better than risking ovarian cancer.

But if someone told me I might become a blithering idiot who no longer felt like she could function with her colleagues and peers, could no longer do the work she’d spent over 30 years preparing for, her life’s calling, to teach — well, that definitely would’ve made me think twice, at least back then when I could think straight.

In A World

In a world where too many women get breast cancer…

In a world where women are forced to make hard decisions….

In a world where we choose between knowledge and….

In a world that is obsessed with boobs….

Ah, I might be on to something with that one.

When my students write papers that begin with “In a world” or some other sort of vague movie-trailer nonsense, I get to slashing with my red pen (I don’t really do that, as it is against my pedagogical philosophy, but it sounds better than explaining said philosophy).  Anyway, it’s how I’ve been tempted to start this piece.  Lately, there have been articles all over the place citing this study and that study – the articles and studies all conclude that mastectomies don’t in fact prove to be any more effective as breast cancer treatment or as a preventative measure than their less drastic counterparts (like lumpectomies, surveillance, etc).  These publications explain that too many women are having unnecessary mastectomies, and they’ve gotten me to thinking, what kind of world do we live in where we question this sort of thing?

Let me explain my frustration.  I get annoyed when doctors (through journalists) start to analyze the reasons why women might choose to have mastectomies rather than pursue other options (for previvors options include surveillance and/or possible chemo-prevention drugs like Tamoxifen; for breast cancer patients, options might include less invasive surgery like a lumpectomy along with radiation and/or chemo).  This recent article, in the Wall Street Journal, like many, is a good example.  In it, one doctor chalks it up to anxiety:

I tell women, recognize that you are really treating your anxiety—and we have better ways to manage that.

Could this statement be any more undermining to women who make the decision to have a mastectomy from a place of power, not from a place of anxiety?  And even if a woman makes the decision to have a mastectomy out of anxiety, how dare you Dr. Partridge judge that fear until you’ve been in her shoes and heard someone say to you, “You have breast cancer.  Now let me go get you a Xanax.”

Excuse me while I go dunk my head in the sink in order to put out the flames shooting from my ears.

Another doctor in the same article, says:

I think that many women are simply terrified of the prospect of having to repeat the diagnosis and treatment experience.

Because surely, terror is simple (ask anyone who works for the NSA, and I’m sure they’ll tell you so).  More importantly, this sort of statement is completely demeaning to any woman who has had a breast cancer diagnosis and treatment experience – it diminishes everything she has gone through to something “simple” that she shouldn’t be afraid of experience again.

Please wait – bringing the fire extinguisher closer to my sitting area now seems like a better idea than continually dousing my head in water.

The reason I get so angry about these types of articles, and this one I cite from the WSJ is just one of many, is for two reasons.  First, although this article quotes a surgeon who says, “Patient choice is taking a much larger role,” that statement is glossed over as if choice couldn’t possibly be a good enough reason.  There has to be something more – fear, anxiety, terror – basically, just women being hysterical, right?  (and I mean that in the etymological sense of the word).  We can’t just accept that women might be making a rational choice to do this.

This leads into the second reason,  which has more to do a bit to do with the world we live in now.  And this goes back to the top of this blog entry.  We live in a world that is obsessed with boobs.  But is it possible, just a little bit possible, that with the pervasiveness of breast cancer – it is everywhere we turn, everyone we know knows someone who has it – that maybe some of us are starting to think about breasts a little bit differently?  Maybe some of us are starting to realize that breasts have the potential to be dangerous. And maybe we don’t care if we have them anymore, and we aren’t so impressed by everyone else’s?.

I’m not saying that breasts don’t matter to women, or men for that matter, nor am I saying that women shouldn’t love their breasts or be sad about losing them.  It is a hard decision to remove a body part, whether you know it’s definitely cancerous or in the case of a previvor, you expect it to one day become so.  I’m just wondering if our perception of breasts as an essential part of our identity is becoming a little diminished as we begin to recognize just how many women are so easily harmed by these things.

So, maybe the decision to have a mastectomy isn’t about fear or terror or anxiety, and it’s more an intellectual decision.   That’s not to say that it’s made without emotion.  But it’s frustrating to read these doctors and journalists who imply that women are making the wrong decision in choosing mastectomy because they can’t get their emotions out of the way.  Especially because I’m pretty sure that we live in a world where a lot of women do things with their brains.