Monday, December 09, 2013

At the Massachusetts Conference for Women

I've been hearing about the Massachusetts Conference for Women for several years, but I was always working and couldn't (or wouldn't make the time to) attend. This year I decided to take the plunge.

The conference was held at the Boston Convention and Exhibition Center, which is absolutely enormous (if you click here you'll see it looks like a spaceship!). You walk first into a giant lobby of sorts, and then you go down stairs into an even more enormous room which is where they had their exhibitors. It was a strange mix of career based organizations (schools, training), health care organizations and services, and vendors of every kind (windows, kitchens, clothing, beauty items, gift items, shoes, etc.). I found it to be a bit confusing and overwhelming.

You walk from the exhibition hall into another huge room which was filled with approximately 1,000 round tables (I did the math, 10,000/10 per table). That is where they had the keynote addresses, and lunch. The speakers were quite far away but there were many giant screens so everyone could see clearly. And the sound was great.

These were the positives:
  • 10,000 women! Just kind of amazing, the sheer number of women at the conference (I saw a very few men - very few. And they looked uncomfortable.) And a huge range of women: young (high school age) to older, all kinds of cultures, all kinds of styles of clothing. Lots of pregnant women, and quite a few in very high heels (not sure why, not very practical for walking around!).
  • Very inspiring, nationally known speakers, in no particular order:


  • Blake Mycoskie
    1. Blake Mycoskie of TOMS, who is an excellent speaker, a very low key guy. The basic story is this: while traveling in Argentina, Mycoskie realized that many children there were so poor that they didn't have shoes, and this literally prevented them from going to school.  He was inspired to create a for-profit company that would use part of its profits to fund giving out much-needed shoes.  You can read more about him here and more about the impact of giving shoes to children here.

    2. A songwriter from South Carolina, Emily Lynch, wrote a very beautiful and touching song about the Boston Marathon bombings called "Heart of this City." She wrote it in response to one of the marathon bomber's tweets that said "there ain't no love in the heart of the city." Here is a version of it. She did a very simple acoustic version at the conference, and I liked it better than this one, but you'll get the idea.

    3. Susan Cain, author of the book Quiet, who talks about introverts in an extroverted world. She was an excellent speaker and talked a lot about research to back up her ideas. However, after hearing her talk, I realized that being in a place with 10,000 women didn't appeal to my introverted side.Whoops!

    4. Linda Cliatt-Wayman is an educator who took over a troubled high school in Philadelphia and turned it around so the students could learn. Education is key to how these kids can get out of the cycle of poverty and violence, and it's very important to them. Cliatt-Wayman is a person of great faith, and she feels she is called to this work. It was very inspiring to hear her speak.

    5. Kerry Washington & Robin Roberts
      Robin Roberts, the news anchor, and Kerry Washington, the actor, both were unable to physically be there but attended via live hook-up. They were both very real, really connected with the audience. They spoke about the power of women, and the importance of the community of women in their lives. Really impressive. Their presentation was facilitated by Tory Johnson, who was great at asking interesting questions.

    6. Laura Munson, a writer and speaker, whose talk was entitled "Getting what you want by getting out of your own way" (you can listen to the podcast here). One great take-away I got from her talk was the idea of instead of saying "I want..." you should say "I create...".  For example, instead of "I want a new job" you say "I create a new job." It gives you more power over your situation. I like it!

    7. Mary Beth Monihan is a VP at Boston Scientific and is probably not a national figure, but I heard her talk at the "Power Stage" and I found her to be very down to earth and helpful. Some of her key points: 
    • What are you really uniquely good at? Ask people you know (friends, family). You might be surprised at what you find out.
    • What are your gaps?
    • What kind of choices are you going to make? Consider that you work for appx. 45 years. One choice is not going to derail you, so it's okay to take some chances.
    • When thinking about networking - help them first, before asking for something.
    • Her talk was hosted by Mel Robbins who is a dynamo, and I picked up her book Stop Saying You're Fine: The no-bs guide to getting what you want. Quite interesting.  

The negatives:
  • 10,000 women. Networking? Too random. Needed a better way to meet people in one's field or with similar interests/ages/stages. They should work on this.

  • The exhibition was too confusing - too many different things mixed together.

  • The workshop sessions were too large (one I attended was in a cavernous, dark room - not ideal). Even though they were smaller than the keynote presentations, they were still huge.

  • Too much emphasis on the corporate sponsors. It started to feel like the whole conference was a huge advertisement after a while. There were 1,600 women attending from State Street alone, which was a big sponsor of the conference. 

Takeaways

One of the biggest takeaways for me was how important education is to kids, and how we take for granted things like having shoes to wear to school, and having schools that are safe and relatively non-violent.  As my son complains about having to go to school, I wish he would realize how lucky he really is. Gives one pause.

Another takeaway for me is simply the power of confidence. So many of these women just exude confidence. They will not take no for an answer. I feel like I'm probably being too nice in my professional life, and that being a little more kick-a&& might be the way to go. I think.

I've also been thinking about how a lot of these very successful folks just seem to focus on ONE THING. Susan Cain focuses solely on introverts.  Blake Mycoskie on giving shoes to poor children. Do you have to just have one focus, one message? Is simplicity the way to go? Just a thought.

I still am chewing on this experience, and hopefully I will have some more insights as time goes on. Stay tuned...

Saturday, November 23, 2013

On job hunting in 2013

Dear person-with-whom-I-had-a-recent-telephone-interview,

I appreciate you taking the time to talk with me on the phone, since now-a-days, it seems that being invited for an actual in-person interview is as rare as an albino squirrel.

You mentioned that you've been interviewing for this position for quite a while but haven't found the right person yet. I have a few suggestions for you:
  1. One of the first things you said to me is that you'd been at work since 7 a.m. and that you would be in the office on the weekend. This is supposed to impress me? Instead it scares me. I don't want a job that requires me to be "on" 24/7. Ever heard of work-life balance?

  2. You mentioned that it's been hard to find a writer who wants a full-time, in-the-office, 40+ hour per week job. You said that the writer needs to be in the office all the time because there is lots of interaction, collaboration with other folks, yadda yadda yadda. Hello, is this 1990? Here in the 21st century, we know about flexible workplaces and flexible hours. If you want a creative person, you might need to be a little more creative yourself with your requirements.

  3. You proudly said that you have a small staff that does a big job, or a small staff that does the work of a big staff, or that you do a lot with a little, or something like that. This makes me wonder if you really have enough staff to do all the work (see work-life balance). Definitely gives me pause.

  4. Now that I am (ahem) older, I trust my gut. My gut says this job isn't going to work for me.  I have a kid I'm still raising, and a husband that I hope to see every now and then. I get the feeling that if I take this job, I might never see either of them again. Thank you for helping me clarify this.
Sincerely,

Adena

Friday, November 22, 2013

Thinking about JFK

(Photo from Wikipedia)
Today is the 50th anniversary of the day that John Fitzgerald Kennedy was assassinated in Dallas. I was just a toddler on that day, so I don't remember it first-hand, but I’ve been thinking about that time a lot lately.

11/22/63

I recently read the fascinating Stephen King novel “11/22/63” which is a fictional account of the JFK assassination, and an attempt on King’s part to understand Lee Harvey Oswald’s motivations. King also has us think about the possibility of what the future might have looked like had JFK not died (note: not what you might expect). This was a very long book, over 800 pages, but I found it riveting. I grew to feel connected to the characters, and I was sad when the book ended. Now when I hear someone ask “why did Oswald do it?” I feel like I have a better understanding, at least from King’s research and perspective, of why.

The Zapruder Film

Others may have heard of "the Zapruder film" but I hadn’t until recently. I just learned that the reason we have footage of Kennedy being shot is because a man named Abraham Zapruder happened to be filming in Dallas just as Kennedy’s car rounded the corner, and Zapruder captured on film the moment that Kennedy was shot. It’s quite horrifying to watch. I never realized that you could see exactly what happened in such detail. You can see JFK react as the first shot is fired, and then you can see the effects of the second shot. You can also see the reaction of Jackie Kennedy. You can see the actual footage here. This video also tells an interesting story of how Life Magazine acquired this footage.

Boston Symphony Orchestra

Here is another incredible piece of history from that day. The Boston Symphony Orchestra was about to start it's performance at 2:00 pm on 11/22/63, and then this happened:
First, we hear the gasps and shushes after BSO music director Erich Leinsdorf utters the words: "The president of the United States has been the victim of an assassination." Second, a wave of groans and sighs after Leinsdorf continues, "We will play the funeral march from 's Third Symphony" — as if the crowd's shared response is that they couldn't possibly have heard the first part right, but that then the orchestra's change in repertoire confirms the awful, unimaginable truth. And then, for the next 14 minutes ... utter silence, save for the incomparably somber music.
You can read more about this moment, and  hear the audio here. It's astonishing.You can experience what the audience was feeling as this terrible news sunk in.

It's through these moments -- the book, the video, the audio -- that I can experience, in part, which it must have been like on that day. Having lived through 9/11 and the Boston Marathon Bombings, I have a sense of what those surreal, "life before and life after" events are like, but these pieces help me experience and understand even more how JFK's death impacted those who lived through that moment in time, and the days following. May his memory be for a blessing.

Friday, November 15, 2013

So sad

Every now and then, something unfortunate happens to someone I know only through the internet. An illness. An accident. Everyone reading about the incident sends along support, prayers, hugs. And then we move on.

But not always.

I've been following the story of a woman rabbi (and her husband) with four kids, one of whom -- an 8-year-old boy -- has leukemia. She calls him "Superman Sam," and has been blogging about his treatment and recovery from his cancer. It seemed like things were going pretty well, until last night.

Last night, right before bed, I was reading through my Twitter feed and this is what I read:
We are so desperately heartbroken and filled with sadness.
Sam has relapsed.

His ninja leukemia is so very strong.
It has reared its head in his bone marrow and in some extramedullary spots on his jaw and head.

There is no cure.
There is no treatment.
Even reading it over now, I am at a loss.

This story starts in June of 2012, when Sam started experiencing severe pain in his legs and arms. After tests and trials of medications and scans, this was the result:
Leukemia.
My whole universe collapsed in on me at 4:30pm on a Tuesday.
My sweet little Sammy.

We asked questions. They made plans. A port to be inserted. A spinal tap to be taken. Chemotherapy to be arranged. We sent texts. We made calls. We wrote emails.

And we cried.

Sam was in a lot of pain. He complained. He begged to go home.

Now it is almost Thursday.
Less than 48 hours later, chemo has begun.
Less than 48 hours later, everything has changed.
Less than 48 hours later, "we won't be here long" has become "a month."

Sam has cancer.
Acute myeloid leukemia.
And our lives will never be the same.
Because all I know how to do at times like this is try to learn, I looked up acute myeloid leukemia. Acute myeloid leukemia is a cancer of the blood. The white blood cells in the bone marrow are abnormal and block the normal white blood cells.  According to the National Cancer Institute, "among the 12 major types of childhood cancers, leukemias (blood cell cancers) and cancers of the brain and central nervous system account for more than half of the new cases. About one-third of childhood cancers are leukemias." The NCI assures us that these cancers in children are relatively rare.

But not if it's your child.

Also according to the NCI, "the causes of childhood cancers are largely unknown." So we don't understand how to prevent them.

I am certain, however, that environmental exposures play a role. And the NCI admits that "the overall incidence of childhood cancer has been slowly increasing since 1975." So something in our world is causing this increase.

However, that is not so useful right now.  My heart goes out to this family. I can't imagine how it must be, trying to parent an 8-year-old boy with a life-limiting illness, while continuing to parent three other children. It says on their blog that they are going to make the most of the time that Sam has left, and that sounds like a good thing to do. It seems that they have a strong, supportive, loving community.

But mostly, this whole thing just leaves me with a dull pain in the pit of my stomach.

Thursday, November 14, 2013

Too heavy

"A community is too heavy to carry alone."
Around the perimeter of the track at the JCC, there is a series of colorful posters designed to give the walkers and runners something to think about (or talk about, if they are walking with someone else).  This particular poster keeps catching my eye. The image is vivid and a bit disconcerting, but the words touch me even more.  "A community is too heavy to carry alone."

This quote is from a commentary on the book of Deuteronomy (the last book of the Torah) called Deuteronomy Rabbah. Deuteronomy is mainly a summary of the first four books of the Torah, and in this part, Moses is discussing (actually, complaining) how difficult it was to manage the Children of Israel by himself.

In fact, it reminds me of one of my favorite stories from the Torah:  how Moses' father-in-law Jethro (who wasn't even Jewish) recommended that Moses get some help because doing everything for the Children of Israel by himself was too much even for Moses. I wrote about this in a blog post here.

Not only is a community too heavy to carry alone, a family is also too heavy to carry alone. A child is too heavy to carry alone. Even a single person living without a child needs other people to enrich his or her life. 

One big problem in the U.S. is the value of rugged individualism, the ideal of "pulling yourself up by your own bootstraps." Not only are people "supposed" to take care of themselves and their families with no outside help, a corollary to that supposition is that "self as the most important thing." The idea "if it doesn't affect me or my family, I just don't care." These values (if you can call them values) have led to a huge divide between rich and poor, as well as huge divide between our two political parties. The idea that we, as a nation, need to take care of each other, and if we have a lot, we need to give a bit more, and if we have little, we can receive help. Somehow the communal values have been lost.

One of my favorite sayings is "it takes a village to raise a child," and I am constantly amazed at how it really does!  When J was small, I gratefully turned him over to his daycare provider several days a week so I could get some things done, and so he could have wonderful experiences that I was unable to provide. During his elementary school years, while I was working part-time, the after-school care program allowed me to work as he was happily playing, learning to play an instrument, practicing his cooking skills, singing and dancing in a play, or doing sports. During middle school, when I was working almost full-time, I often had to call on other parents to pick him up from school when I was running late, or when school closed early. And now that I'm the one at home, other parents call on me to help pick up kids who missed the bus, or to let in the washing machine repair man. It really does take a village of people to make it all work.

Motherhood, especially when kids are little, can be so isolating. Sometimes it's hard to ask for help. Sometimes you feel like you are supposed to do it all by yourself - and what's wrong with you if you can't?  Now-a-days, moms are supposed to work, take care of the kids and the house, get great meals on the table, stay slim and fit and sexy, and do lots of crafts (a la Pinterest)! It's impossible. And it's really impossible without a village, a community, to put the pieces together.

I took another look at this poster, and I realized there is something fundamentally wrong with it. It talks about community, but there are no images representing people (except for the hands): community is represented by buildings.  I think this is a mistake.  Community may take place within buildings, but community fundamentally consists of people.

I found the source of these posters online, and there is some commentary that goes along with this one that I really connect with:
 Jewish tradition says that it is in the muddy, complex, fraught world of human relations and shared responsibility that God’s presence can be brought into our lives.
We need to share the heaviness with others. We need to recognize our own limitations, and the places where we need help. Asking for and accepting help -- not doing it all alone -- leads to holiness.

NaBloPoMo November 2013

Thursday, November 07, 2013

Dancing before surgery

If you are a regular reader of my blog, you know that I don't think women should make the decision to have a double-mastectomy lightly. So seeing this crop up on the interwebs today is making me a little crazy.

Before a Double Mastectomy, a Dance Party 
and also this
This Woman Was About To Go In For Surgery. What She Did Moments Before Was Awesome.

Yes, you read that right. A woman -- not just any woman, an ob/gyn and mom -- is about to go into surgery to have her breasts removed, and she is dancing with her surgical team.

You can watch it here

So I don't know her whole story. I am hoping that she's having this procedure for a good, evidence-based reason, i.e. she has one of the breast cancer genes and is at extremely high risk for breast cancer, and this is her best option. I'm hoping she's not just doing it out of fear; thinking that just "taking them off" will remove all risk of future cancer; or because she doesn't want to worry anymore.

But I don't have that information yet.

So why are folks so enamored with this woman (who arguably seems like a pretty cool person, and a good dancer, to boot)?

Because she's being brave in the face of something terrifying? Because she's thumbing her nose at cancer?

But what about folks who can't dance before their surgery? How about folks that are just too worried or scared or just plain sick to dance? Shouldn't they live in our hearts as well?

I guess the point I'm trying to make is: it's pretty neat that she seems so joyous before her surgery, but this isn't a typical response to surgery. Most of us would be terrified. I feel putting this video out there is making us feel like we have to be braver than is actually expected or needed. Her good attitude isn't going to change the fact that she has weeks if not months of painful recovery ahead. This is no joke. She's not going to be able to dance again for a good while.

NaBloPoMo November 2013

Tuesday, November 05, 2013

The dreaded hyphen

To be perfectly honest, I can't stand when someone asks for my full name on the telephone. Not only do I have an unusual first name (with an atypical spelling), I also have an unusual and hyphenated last name, and I end up saying something like this: "Okay, my first name is Adena, A-D-E-N-A, and my last name is Cohen-Bearak, C-O-H-E-N, hyphen, then B as in boy, E-A-R-A-K. Got it?"

Typically, they don't. And I have to spell everything out again.

When I decided to hyphenate my name in 1996, I thought I was making a feminist statement. I didn't realize that I was creating a monster.

I grew up in the '60s and '70s: women's lib, burning bras, and all that. A few friends got married in the '80s, and most of them kept their maiden names, which made a lot of sense to me. In the '90s, when more of us finally found our life partners, we all had some decisions to make.

Some of my friends had professional careers associated with their names, and it made sense to keep their maiden names. Some of my friends felt strongly that they wanted a family name for their newly-formed family, and often they went with their husband's last name from convention. I do know a few couples in which both parties (husband and wife) took on a new, hyphenated name, but this was very rare.

In my case, I met my husband when I was in my early 30s, and we got married when I was 36.  At that point, I had been Adena Cohen for quite a while (well, for 36 years) and I felt like it represented a part of me that I didn't want to give up. But I also wanted to honor the fact that I was entering a new relationship and creating a new family. So I decided that I would hyphenate my name to Cohen-Bearak, Cohen which is my maiden name and Bearak which is my husband Arnie's last name. I like the order: I used to be just a Cohen, and Cohen is the name I say first, and my new name is Bearak, and that's the name I say second.

We have been married for 17 years now, and at this point, I'm used to Cohen-Bearak, and I feel funny using just Cohen.  Occasionally, an old friend will still refer to me as Adena Cohen, and it feels kind of naked to me. Where's the Bearak?

On the other hand, when my son was born, I didn't want to burden him with the hyphenated name. It just felt too long, too much. It is confusing sometimes when I have a different last name from my husband and son, but people just have to deal with it.

In the end, I think I made the right choice for me, but it has been more trouble than I expected (the hyphen and all). I wish there was an easier way to honor both partners' last names without hyphenating, but aside from creating a brand new name (which some folks do), I can't think of a good solution.

So the hyphen stays.

Note: I got the idea for this post from the Jewesses With Attitude blog http://jwa.org/blog which is doing a series on how people make decisions about their last name when they marry. The JWA blog decided to re-post my post! You can see it here.

Also, BlogHer decided to feature this post! You can see it here.


Featured on BlogHer.com
NaBloPoMo November 2013

Monday, November 04, 2013

Bad mood

Things aren't so great in the U.S. right now.

There is a shooting by some crazed person in a public place at least once per week. Unemployment is still high even though the economy is supposedly doing better. Politicians and news commentators are still unable to speak in a civilized way to those who disagree with them. The new health care system roll-out, which should have been a good thing, is turning into a bad thing because of computer problems. Food stamps are being cut.  Mitt Romney is trying to find his way back onto the political scene (which to me, might be the worst thing of all).

The whole country seems to be in a bad mood.

I was talking about this yesterday with a group of friends, and one friend said that it all boils down to community. You can't just focus on yourself and your family, and not care about everyone else. We are all part of a whole. If things are going badly for some folks, we can't just ignore them.  We have an obligation to help.

She is so right.

Obama's health care program was intended to ensure that everyone in the country has a good, basic level of health care. This is not a crazy thing. Most first world countries have this. But politicians and commentators are acting like this is absolutely the worst idea ever. I just can't see why.

Some say that if you don't have health insurance, you just go to the emergency room for care. But don't they realize that taxpayers pay for those who come to the ER without insurance? And that the care given in the ER is more expensive than if those folks just went to a regular doctor? It's so short-sighted.

Programs like unemployment and food stamps are designed to help folks who are in a bind, who need a helping hand. But commentators and politicians can only focus on those who abuse the system, as if these outliers prove that the programs are bad. They aren't bad programs, and they are helping people. But somehow that kind of help is looked down upon in our "pull yourself up by your bootstraps" country.

It's frustrating that the new health care website isn't working correctly, but a lot of websites aren't working correctly these days (including the MA unemployment system website, the SNAP program computers that weren't working a few weeks ago, and others) . That doesn't mean that the whole healthcare program won't work. It's a temporary thing. But folks can't see the big picture.

What we need are less guns, more jobs, less vitriol, more healthcare, more food stamps, less hate, more help for those who need it.

If only it were that easy.

NaBloPoMo November 2013

Thursday, October 31, 2013

Pink is almost over

October is almost over, and that means the incessant onslaught of pink is almost over, as well.

I'm very glad for that.

Sometimes people don't understand why I don't love all the pink. I had breast cancer. Shouldn't I love all the attention being given to "find the cure" and "awareness"?

The reason I don't love the pink is complex. First of all, there is never going to be one cure for breast cancer. Breast cancer is actually many different diseases, and likely if a cure is to be found, it will be many different cures.

Treatments are improving, no doubt, but we still don't know a lot about why women get breast cancer in the first place. Prevention -- real prevention -- is just in its infancy. (See this "helpful" infographic. How many of these things can you really do anything about?)

Also, we don't understand why some women get breast cancer and it spreads (metastasizes) even if it is found early and treated early, and some women get breast cancer and it never spreads. Remember, women don't die from breast cancer tumors in their breasts. They die from metastasis to other parts of the body.

Women are responding to these uncertainties by having mastectomies when they don't need them. This is a crisis in and of itself.

Where do we go from here? Clearly, research needs to continue. Research into prevention, into better detection that differentiates between cancers that should be treated and those that don't need treatment, into better and less toxic treatments, and into treatments to prevent metastasis. We need a reasonable approach to research. This website from the UK shows what a reasonable approach can look like.

We need better laws that force companies to test chemicals used in consumer products so that we aren't exposed daily to chemicals whose effects are unknown. However, we can't expect consumers to protect themselves on their own by careful shopping and avoiding certain products. The laws need to change. 

Most of all, I think we need some common sense. We need to realize that breast cancer isn't simple. It's not a sound bite. It's complicated, and prevention and detection and treatment are complicated, and we have to be okay with that.

And that's all I have to say. For now.



Thursday, October 24, 2013

Side effects

I was walking/running around the indoor track at the JCC recently, and the smell and sounds of the gym reminded me of that horrible period of time when I was having side effects from breast cancer study medications.  It was just about 4 years ago. I would walk the track, trying to use exercise to exorcise whatever it was that was making me feel so awful.

http://healthycollegegirl.files.wordpress.com/2011/01/indoor20track201.jpg
This is what the track (above) and the gym (below) look like
The track was upstairs, and J would play basketball on the courts below. As I walked round and round the track, I felt like I was enveloping him as I peeked down and watched him shoot. I found it very moving in my sickened state.

So this is what happened. After surgery, my oncologist encouraged me to join one or more research studies. Since I decided not to have chemotherapy (which is a whole other story), I became interested in ovarian suppression, which is supposed to reduce the amount of estrogen circulating in your body: a good thing for someone with an estrogen receptive tumor.  Some studies I read indicated that ovarian suppression might even be equivalent to chemo in terms of preventing future cancers.

The study I was interested in was called the TEXT Trial (Tamoxifen and Exemestane Trial): in it, participants would receive monthly shots to cause ovarian suppression (essentially putting subjects into pseudo-menopause) through a drug called triptorelin (which I later discovered is mostly used to treat men with prostate cancer) and either take tamoxifen, which is a typical breast cancer drug given to many women including pre-menopausal women, or an aromatase inhibitor, which is a newer breast cancer drug for women who are post-menopausal.

I signed up for the study, and after completing radiation in June 2009, I started taking tamoxifen, and set up an appointment for my first ovarian suppression shot.

Walking into the oncology department at the BIDMC, I encountered patients in various stages of cancer treatments. There were some who looked fairly normal; others with no hair, or with wigs or hats of various sorts; and some that looked thin and ghostly. When you went to speak to the receptionist, there was a basket of crackers for patients who were nauseous from their treatments. The whole place was sobering.

After some paper work and the inevitable blood drawing, I was escorted back into a remarkably sunny room with many lounge chairs. This was the chemotherapy room. I wasn’t there for chemo, but to receive my ovarian suppression shots. Anne was my nurse, and is one of the cheeriest people I’ve ever met. She would kindly instruct me to drop my pants and would inject me with the triptorelin. It hurt.

Several months of shots went by and I still was having my period as usual. I was anxious for my periods to stop. In retrospect, I’m not sure why I was so anxious to have them stop. I don’t think I realized what menopause – even pseudo-menopause – would be like.

And then my periods stopped. And the hot flashes started.

Around the same time, my oncologist wanted me to get off my tried-and-true anti-depressant Zoloft and onto something that was less likely to interfere with the tamoxifen. (At that time, there was some worry that taking tamoxifen with an SSRI would reduce the effectiveness of the tamoxifen. This has subsequently been disproven, but at the time it was a concern.) I saw a young, pregnant psychiatrist at the BI who switched me to Effexor XR which wasn’t supposed to interfere with the tamoxifen. Unfortunately it didn’t help my depression at all, either.

Once the hot flashes started, they were so strong that they started waking me up at night, and I wasn’t sleeping well. The psychiatrist gave me some sleeping pills. So now I was taking a new antidepressant, tamoxifen, the ovarian suppression shots, and sleeping pills. It was not a good combination.

I started having stomach aches and feeling really lousy. I was sleeping a bit better with the sleeping pills, but not great. Eventually, I started feeling nauseous every morning. I had to take bags of food with me to work – cottage cheese, fruit, crackers – to keep the nausea at bay. And I was losing weight.

By mid-December, I was feeling awful pretty much all the time. I was feeling dizzy and light-headed, nauseous, not sleeping well. I was also having a racing feeling in my chest. I didn’t know what to do.

I decided that I needed to go off the new anti-depressant and back on my old standby. The only problem was that I was on an anti-depressant that was notoriously difficult to get off of. Because it was the extended release version, it would stay in your system for a long time, and if you stopped taking it, you would get little “brain zaps.” I read about them, but only once I tried to go off the medication did I realize what they were really like. I would turn my head and...zap. It really felt like something inside me was going “zap.” It was freaky and weird.

It was Christmas vacation week, and I remember calling up my oncologist, completely distraught.  She agreed to see me the next day, and I remember going to the appointment with A. I tried to explain everything that was happening to me. She was sympathetic, but didn’t really have any good answers. It was so frustrating, and looking back, infuriating.

I kept Googling “tamoxifen” and "triptorelin" and “nausea.” There were some women online reporting this combination of symptoms, but not a lot. I couldn’t figure out why I was having all this nausea.

The psychiatrist I was seeing had gone on maternity leave, so I made an appointment to see a colleague of hers. This woman turned out to be one of my saviors. She knew how to wean me off the Effexor XR – without brain zaps -- using small amounts of regular Effexor at intervals during the day. I finally got off the Effexor and back onto Zoloft. But I still couldn’t sleep without the sleeping pills. And I was still having heart palpitations and nausea. I went to see my regular PCP, who set me up with a heart rate monitor. Everything was within normal limits, which wasn't particularly helpful.

I decided I needed to go off the study and off the ovarian suppression shots, and to take only Zoloft and tamoxifen. But I still needed to get off the sleeping pills. Looking back, I was addicted to them.

I finally started seeing another psychiatrist in my town to try to get some advice and try to heal from all these symptoms. She suggested limiting caffeine (which I hadn’t thought of), and that really helped with the heart palpitations. She also suggested taking smaller and smaller amounts of the sleeping meds to wean myself off them. In the end, once I was off the sleeping pills, I realized that it was the sleeping pills that were making me nauseous. I’d never even considered that.

I also did some acupuncture treatments which really helped with the hot flashes.

By spring, I was completely off the sleeping pills, and no longer receiving the ovarian suppression shots. I was back on the anti-depressant that worked for me, and still taking the tamoxifen.

I felt so much better.

This whole episode, however, still makes me really angry. Somehow with all the different doctors (who weren't talking to each other) and all the different medications, I was left to sort out this whole mess on my own. Everyone knew what medications I was taking, but no one ever said: hmm, maybe the sleeping pills are causing the nausea? Maybe this study medication isn't good for you? Maybe you should get off the trial?

I made it through this episode, and recovered, but it easily could have spiraled into something much worse. This isn't so much about breast cancer per se, but more about how uncoordinated medical care can be, and how easy it is to get caught in the cycle of taking one medicine to help with the side effects of another medicine, and then another, and then another. I hope this sort of thing doesn't happen too often, but I suspect it happens quite a lot.

Thursday, October 17, 2013

Finding out - Part 3

Note: you can read the first part of this story here and the second part here.

My primary care doc insisted that I make an appointment for Thursday so she could give me the results of the breast biopsy. A and I both took off work that day, and we sat around the house, waiting for the appointed hour. The waiting was agonizing.Was it cancer? Was it something else?

Finally the time of the appointment arrived, and we drove the short distance to my PCP's office. We checked in, waited for a bit in the waiting room, and then were brought into an exam room. We sat there, and waited. And waited. And waited. I was becoming more and more nervous.

The doctor came in, and told us that the pathology report wasn't ready yet. She had even asked them for a preliminary report, but they wouldn't give her one. She apologized, but the reality was that we weren't going to find out today.

It was so frustrating. I just wanted to know one way or the other. Not knowing was driving me crazy! We had wasted the entire day waiting. My doctor agreed that I didn't have to come back for the results; that she would call me as soon as she knew.

The day passed, and no phone call. It looked like Friday would be the day I'd find out.

On Friday, both A and I went to work. We just couldn't wait around the house anymore.

Finally, around noon, my doctor called. "It came back positive for breast cancer. It's invasive ductal carcinoma," she said. I'd never heard that term before. "It's what most of my patients have when they have breast cancer." The next step, she told me, was to call the Breast Center at the hospital to schedule an appointment.

I stuck my head into my co-worker's office to tell her what was up. I don't remember exactly what I said, something like "it's not good news." And I packed up and headed home. I don't remember crying, although I'm sure I did cry. I also must have called A on my way home to tell him the news.

When I got home, I called the Breast Center. "Hello, I've just been diagnosed with breast cancer." What a strange, strange thing to say. It was all very surreal.

They gave me an appointment the following week at the multi-disciplinary clinic. I would meet with 3 physicians in the span of a few hours: a medical oncologist, a radiation oncologist, and a breast cancer surgeon.

My memory of that day is trying to take in a lot of information in a very short amount of time. First we met the medical oncologist, a woman who was young, dark-haired, tall, and pretty. A immediately dubbed her "hot oncologist babe," a name that stuck for quite a while. She examined me, and was concerned that the tumor was very close to my nipple. She thought I might need chemo before surgery (called neoadjuvent chemo) to shrink the tumor. I'd never heard of that before.

Next we met the radiation oncologist. Also a young woman, tall, and with an accent. She seemed very nice, and talked about radiation therapy, but that was something down the road. First stop would be surgery.

Last we met with the surgeon. An older woman than the others, she was calm and lovely. She examined me and felt that she could probably take out the tumor and save my nipple. If not, she said, she'd just take the nipple off and my breast would look like a mountain with the peak removed. Our next step was to schedule surgery.

There was a nurse there kind of coordinating the visit, and before we left, she gave us one sheet of paper that had all the information I needed about my breast cancer. Looking at it now, it's kind of amazing how organized the whole process was.

In retrospect, there wasn't really a discussion of choices. The plan pretty much had been made for me. Lumpectomy, discussion with the oncologist about hormonal therapy or chemotherapy, and radiation therapy. That was the plan. Also in the mix: genetic testing for the breast cancer gene.

My surgery was scheduled for several weeks later. Now I just had to tell everyone what was going on.

P.S. The government shutdown ended today. I am very relieved, but also disgusted with many of the people running our government. It's a very strange time here in the U.S. Strange indeed.

Sunday, October 13, 2013

The things that I'm afraid of

Note: This has been a very difficult post to write, and I sure it will be difficult to read. But I want to tell the truth about breast cancer. And the truth isn't pretty.

It's been almost 5 years since my breast cancer diagnosis, and I'm doing well. My surgery scar is healed, my only major side effects from the Tamoxifen is hot flashes and (ahem) weight gain, and overall I'm feeling fine. However, there are two words out there that still -- and probably always will -- make my breath catch in my throat:  recurrence, and mets.

First, recurrence. Every breast cancer "survivor" worries that even thought she is "cured" or NED (no evidence of disease), that some day she will have a recurrence of breast cancer. The breast cancer could come back in the same breast, although this is less likely if you have had radiation therapy. Even a woman who has a mastectomy could have the breast cancer return in the scar or chest wall. According to Susan Love, this happens about 10% of the time.

You could also get another type of cancer in the same breast, your other breast, or someplace else in your body. This isn't technically a recurrence: it's another "primary" cancer.

Another thing that can happen is that you can get metastatic disease, known in the cancer world as "mets" for short.  Every breast cancer "survivor" worries that even thought she is "cured" or NED, and even though she had chemotherapy and suffered through nausea and hair loss and chemo-brain, and even though she took Tamoxifen or an Aromatase Inhibitor or some other estrogen-blocking medication for 5 years and suffered through hot flashes and aches in her bones, that some day, a tiny cancer cell will spread through her lymphatic system and take residence in her brain, her liver, her lungs, or another organ, and start growing there ... and she will have mets. Stage IV breast cancer. There is no cure for Stage IV breast cancer.

The good news is that metastatic disease has become somewhat of a "chronic" disease, with many treatments available, each of which will work for a time, and then the care team will move on to another. So women with mets can often live for many years.

The bad news is that eventually, the disease will win. Women can live a long, long time, but there is no "cure" for metastatic disease.

Dr. Susan Love explains how women get mets like this:
In order to metastasize, cancer cells have to evade the body's immune system, make new blood vessels, travel through the bloodstream, figure out what organ to go to, break out of the blood vessel, get into the new organ, and set up a new home. But even when early metastasis has occurred, it doesn't necessarily spell doom. Let's say that the cell has successfully made the journey to the lung. Once it arrives there it has to establish a new home by making new blood vessels. It's possible that other cells in the lung may be able to keep these invaders under control. The cells then act normally until something happens—a change in the lung's environment or a new genetic alteration occurs that allows the breast cancer cells to grow in the lung. This might explain why some women will have a recurrence of breast cancer many years after the first diagnosis. Those cells were there from the beginning but were dormant until the right conditions induced them to grow again.
There is an active and supportive metastatic breast cancer community, and some of the organizations include Metavivor and the Metastatic Breast Cancer Network (MBCN). 

I know people who've had recurrences, who've had new primary cancers, and unfortunately, some who have mets. I have a cousin and a friend who both died of mets related to breast cancer, both in their 40s. And I have a college friend who died of mets related to lung cancer in her 40s.

There are some women who write very eloquently about living with Stage IV breast cancer, such as Lori of Regrounding and Lisa of LisaBAdams, and Nancy of Nancy's Point doesn't have mets although her mother does, and she posted a page about mets that is full of wonderful information. I admire these women for having the courage to write about their experiences, no matter how difficult or painful.

The truth is, every now and then I go to a breast cancer blog to see what's up, and that person has died. Yes, died. It's devastating. Sometimes the husband or partner will continue writing on the blog, and that's painful to read, too.

Even though breast cancer is being discovered earlier and earlier, women are still getting mets and dying from mets at the same rate as they were many years ago. So early cancer treatment is not preventing mets. This is really important, and really difficult, to understand.

Archie Bleyer, M.D., and H. Gilbert Welch, M.D. wrote an important article in the New England Journal of Medicine about mammography and breast cancer, and one of their conclusions is this:
Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer.
Early detection and treatment are NOT preventing mets.

So today, October 13, is Metastatic Breast Cancer Awareness Day, sponsored by MBCN. You can read more about it here. Here is something posted on the site:
Oct 13 is National Metastatic Breast Cancer Awareness Day. We are the Debbie Downers of the breast cancer world--feared, ignored and underfunded. Most people are familiar with early stage breast cancer. Metastatic breast cancer is very different. Treatment is ongoing and unrelenting for the 150,000 US women and men living with this incurable disease. To learn more, visit www.MBCN.org
So the truth is, I'm doing fine right now, but there is always a chance that I could get a recurrence, or mets. So there is really no "cure" and no "cancer free." There is only waiting, living, and hoping.

Wednesday, October 09, 2013

Breast cancer prevention?

The harsh reality is that there IS no breast cancer prevention. We just don't know exactly what causes breast cancer. Cancer is an overgrowth of cells - normal cells that start growing wildly. But WHY do these cells suddenly (or not so suddenly) start growing wildly?

There are a few theories. One is that estrogen-fed breast cancer, which is quite common, is caused in part by too much estrogen exposure in the body. This could be due to: early menses, late childbearing, lack of breastfeeding, late menopause, lack of exercise, drinking alcohol, hormones in the food supply, and a host of other things that could cause a woman (or girl) to be exposed to estrogen. So one theory of prevention is if women (and girls) reduce their exposure to these estrogen-causing things listed above (some of which we cannot control, you will notice), that it might help in reducing their chances of getting breast cancer.

Another theory that is espoused by Dr. Susan Love (one of my heroes) is that with cancer, the "neighborhood matters." Dr. Love feels that cells need to be in a certain "neighborhood" in order to overgrow.
My usual metaphor for this is thinking of a neighborhood where the individuals in the neighborhood with their own talents, neurosis, and problems (the actual cancer cells) interact with each other and also relate to the conditions and other people in the neighborhood i.e. graffiti, garbage on the street, drug pushers, crime, gangs etc.  All the factors combine together to lead to bad things happening.
You can read more about her theory here. This theory isn't really helpful right now, but may be helpful in the future in trying to figure out how to prevent breast cancer or how to prevent cancers from metastasizing.

Another theory, and one that is gaining traction in the scientific community, is that there are chemicals in our environment -- in the food we eat, in our homes, in our cleaning and personal care products, everywhere -- that haven't been properly tested for their impact on humans, and which are causing breast cancer as well as other cancers and other health issues as well.  It's like we are living in a giant experiment. I truly feel that some day, say 50 years from now, people will look back and say: how stupid they all were! Why did they think it was okay to use pesticides on crops and give hormones to animals and then ingest that food? Why did they think it was okay to pump chemicals into waterways and into the air, so that animals and humans breathe and drink the contaminated water and air? What were they thinking???

People always want to know what they can do to prevent breast cancer, and some people take the personal approach. They choose to eat organic food, to buy organic personal care products, to avoid using pesticides in their yard, etc. This is a fine approach, but I feel that it's just not enough. We are exposed to too many chemicals just from living in our environment. Unless we live in a bubble, we can't control everything. You can control what you do, but what if your neighbor uses pesticides on her lawn? What needs to change is the policies that allow all these chemicals out into the world.

This may not be a popular position, but I'm not thrilled with websites that tell you personally how to reduce your risk. For example, the Breast Cancer Fund's website has a section called Reduce Your Risk in which it lists all kinds "tips on how you can make simple changes to reduce your risk." The Silent Spring Institute has a new website called Too Close to Home that similarly talks about how individuals can reduce their risk through avoiding chemicals and other exposures in their homes. I just don't feel that this is enough; I also feel like it's giving people a false sense of control. It's much bigger than what each of us does personally. It's much, much bigger than our personal decisions and behaviors.

Tuesday, October 08, 2013

Finding out - Part 2

A few days later, I went in for my biopsy. This is what I remember.

The technologist had very long grayish hair, and was very sweet. She brought me into a room for the procedure. I remember that there was wallpaper in that room that reminded me of the wallpaper in our kitchen: white with little bunches of flowers, very old-fashioned looking. Everyone involved was female -- a fact I found comforting -- and women bustled around me as they set up for my procedure. It turns out that they were trying out (!) a new kind of biopsy instrument, and the rep from the company was there as well, so it was crowded in the small procedure room.

I think they started with an ultrasound, but I'm not sure. They numbed my breast with a local anesthetic, and the doctor used the instrument to take cells from the lump. It was loud, and it hurt some. I think they gave me some extra lidocaine. I remember that she showed me what she had extracted from my breast: it looked like little tiny pellets. She also inserted some kind of marker into my breast, and after the biopsy, the long-haired technologist took me into another room for a mammogram to make sure the marker was placed correctly. I really didn't want a mammogram after all that, but it was necessary, and it hurt. I remember that the tech gave me an ice pack to put into my bra. Then I went home.

They told me it would take a few days for the results to be ready.

What's odd is that now I can look at the hospital records and see if my memory is correct. This is what it says:

ULTRASOUND-GUIDED CORE BIOPSY, RIGHT BREAST: The patient was referred for an ultrasound-guided core biopsy of a mass in the right breast at 12 o'clock. The procedure, risks and benefits were explained to the patient and written informed consent was obtained. A preprocedure timeout was performed using two patient identifiers. Using standard aseptic technique and 2cc 1% lidocaine for skin anesthesia, a small skin incision was made. Then a coaxial 10g needle was placed adjacent to the tumor mass and following deeper anesthesia with 10cc lidocaine with epinephrine for local anesthesia, 12- gauge Suros ATEC vacuum- assisted biopsy device was used to obtain seven core samples of this lesion. Following the biopsy, a retangular titanium SUROS clip was deployed into the lesion under direct ultrasound observation. The patient tolerated the procedure well and there were no immediate complications. The procedure was performed by XXX M.D. IMPRESSION: Successful ultrasound-guided core biopsy of a mass in the right breast at 12 o'clock. Pathology is pending
My primary care doctor told me to make an appointment for that Thursday -- 2 days later -- so she could give me the results. The problem is, they told me it would take 2 or 3 days to get the results. I was worried that the results wouldn't be ready in time for the appointment.

To be continued...

Sunday, October 06, 2013

Too much

I just had a conversation with someone I know who was recently diagnosed with breast cancer. From what I can tell, it's a fairly small, early cancer with no spread detected (as yet), so she would be a good candidate for lumpectomy, radiation, and hormonal therapy. But the woman I was speaking with is opting instead for a double mastectomy. Having both breast surgically removed. Her reason? So she doesn't ever have to deal with breast cancer again.

In my opinion, she is doing too much. And it bothers me. A lot.

I've been hearing a lot over the past few years about women who choose to have contralateral (both sides) prophylactic (preventative) mastectomy (removal of the breast), also known as CPM for short. It seems to be, for lack of a better word, a fad. It seems to be a choice for many women with all stages of breast cancer, including Stage O, Stage 1, and Stage 2, all of which can be treated with lumpectomy, radiation and hormonal therapy. But women are choosing the most extreme approach. Why?

It turns out there was a major study just published last month in the Annals of Internal Medicine (this link is to the abstract only). This study surveyed women who had chosen CPM. 94% of the women chose to have the procedure to "improve their chance of survival," and 98% to "reduce the risk that cancer will develop in the other breast." The only problem is, as the authors note, "CPM is not likely to improve breast cancer survival rates." If a woman has cancer in one breast, her chance of getting it in the second breast is only 4-5% in the next 10 years. So women are getting this extreme procedure, not for a physical benefit, but for a psychological one.

There are several interesting articles about this study online. In this article from Medscape Medical News, one of the study doctors is quoted as saying:
“Many women have unrealistic expectations of what having their opposite breast removed will do. We did a study that was published last year in which the women we interviewed thought their average risk of getting cancer in the opposite breast over 10 years was more than 30%, when the actual risk is about 4% to 5%. The take-home message from this study, which is a great study, is that physicians need to take time and explain the facts to their patients.”
Another issue is the potential of complications from the surgery, the recovery period from the surgery, and future issues such as "unplanned operations, less than ideal cosmetic results, sexual side effects, and self-image issues," said Dr. Attai, a breast cancer surgeon quoted in the article.

A second article, from the LA Times, discusses this same study. In this article, the author states:
...the women did not seem to fully grasp that they could keep their healthy breast and have the same long-term odds of surviving breast cancer. An editorial that accompanied the study noted that over a 20-year period, no more than 1% of those who decide to keep their healthy breast later die because their breast cancer has spread there.
I wrote several months ago about the celebrities who are having CPMs and making it seem so do-able and easy. This is another part of the picture. High-profile women with breast cancer are having these procedures, and regular women think, "well, if they can do it, why not me?"

In the end, women need to make their own decisions. I tend to err on the side of being conservative with medical issues. Others would choose to err on the side of being more bold. Still, it makes me sad to think that women are so afraid of breast cancer that they would choose to cut off their breasts. It just makes me sad.

Saturday, October 05, 2013

Finding out

This is the story of how I found out that I had breast cancer.

Since my mother had breast cancer at 47, my primary care doctor considered me at higher risk, and she had me come in for a breast exam every six months, with mammograms once a year. This time -- it was December 2008 -- I went in for my six month check, and she felt something different. It was a firm lump in my right breast. She didn't act too concerned at first, and when I felt it, it really felt like just normal lumps and bumps that I'd experienced over the years. We decided that I'd come back a few days later to see if it was any different. I kept feeling the lump, and it was still there by the next week, but I'd convinced myself it was nothing.

My doctor was not convinced. She tried inserting a needle into the lump to see if she could get some fluid out of it: nothing. The lump was just there, lump-like.

"Well," she said brightly, "looks like you are going to have some extra imaging!" The office staff set me up for a mammogram and ultrasound in a few weeks. I kept feeling the lump, and kept denying to myself that it was anything.  Weeks passed.

Finally the day for the imaging came. It was early January 2009, and A and J were both home. I drove myself to the hospital for the tests. I don't remember a lot about the mammogram, but I vividly remember the ultrasound. The imaging technologist kept running the wand over my breast, over and over, and it was starting to feel uncomfortable. Then two doctors came in, an older woman and a younger man. The male doctor spoke to me, and said that they were recommending a biopsy.  "What do you think it is?" I asked. "Oh, it could be many things," he replied cryptically. Neither he or the female doctor said anything about breast cancer.

After they left, I was left in the room with the technologist. She looked at me. "I've been doing this for 20 years," she said, "and I'm pretty sure that it's breast cancer."  I started to cry.

She gave me one of those sad boxes of tissues that they have in hospitals: tissues made out of the thinnest possible paper.

I don't remember much of what happened next -- I must have changed into my clothes -- and when I got downstairs into the main lobby of the hospital, I called A, crying. "They think it's breast cancer."

And that's how it all began.

I still wonder to this day why that male doctor didn't tell me the truth, and why the older female doctor didn't correct him. What were they thinking? Did they think that not telling me was the right thing to do? I'm glad that the technologist was honest with me, but why was it left up to her to tell me the truth? I'll never understand exactly what happened in that room, but it was all confirmed about a week later. It was indeed breast cancer.

Friday, October 04, 2013

Turning pink

Our local paper the Needham Times has "turned pink" as it does every October. The newspaper is literally printed on pink newsprint (see below). To me, it's highly unnecessary at best, and at worst, feminizes and infantilizes breast cancer, but someone must feel it's a good idea. Or perhaps, to someone, it's a "feel-good" idea.
There are several articles in this week's "pink" paper about breast cancer, and one in particular that I actually found refreshing. It explained about the different subtypes of breast cancer, and a bit about how cancer treatment is becoming more personalized -- which it is -- based on the type and subtype of the cancer, stage, etc. It also mentions the issue of cancers behaving differently in different people, and the reality that some women respond better to a treatment than others, why some women have their cancer recur while others don't, and why some cancers metastasize and others don't. It's good to see a more complex and nuanced explanation being laid out, instead of just a simplistic one-size-fits-all portrayal of breast cancer that you often read about.

I'm happy also to see that the Times isn't printing the "feel-good" type stories that they have had in the past about breast cancer survivors, talking about how "strong" they are, and how "brave." It's not that we aren't strong and brave: it's that we are also weak and scared and human.

Although there seem to be less "pink" things going on this year, there are still some, and I find them annoying. For example, I read in today's Boston Globe that the Museum of Fine Arts is having an exhibition entitled Think Pink which "explores the history and changing meanings of the color as its popularity ebbed and flowed in fashion and visual culture from the 18th century to the present day." It is no coincidence that this exhibit starts Oct. 1. "The opening of “Think Pink” in October coincides with Breast Cancer Awareness Month, when the MFA will be illuminated in pink." Really? Do they need to illuminate the MFA in pink? Ugh.

In case you haven't noticed yet, I'm not a big fan of the whole pink thing.

Think Before You Pink is a project of a great organization called Breast Cancer Action. The idea behind Think Before You Pink is that companies are profiting from pink merchandize, and it is up to us to research who exactly is receiving these funds before we blithely donate to organizations selling something pink. This year, the Think Before You Pink campaign is focusing on toxic chemicals in consumer products and in the environment, which is something I feel very strongly about (and will discuss more in a future blog post).

I'll leave you with another strange example of pink-ness: apparently Chile's presidential palace is being lit up in pink lights this month for breast cancer awareness. In this article, the First Lady of Chile was quoted as saying: “still there is the mistaken and damaging assumption that not all women need to get mammograms for the prevention and early detection of this type of cancer." Well, mammograms don't prevent breast cancer, and early detection isn't always possible, but I guess they are kind of on the right track...

Thursday, October 03, 2013

What makes a Jew a Jew?

Everyone suddenly has their panties in a twist about the new Pew Research Center study that came out this week, A Portrait of Jewish America. You can read the study yourself here. One of the most prominently reported findings of this study is that one-fifth of Jews in America describe themselves "as having no religion," and instead "identify as Jewish on the basis of ancestry, ethnicity or culture."

Some argue that this is the end of the American Jewish community. Others view it as just the opposite. Still others think that this is not bad news or new goods, but shows where Jewish organizations and synagogues need to focus their work.

J.J. Goldberg of the Jewish Daily Forward comments:
The striking thing isn’t that they don’t identify with Judaism as a religion. What’s striking is that they still want to call themselves Jewish when you give them a chance—that is, when you conduct the survey in a way that makes them comfortable (which should be rule one in any survey, I’d think). What’s amazing is that 94% of those 6.7 million Jews are proud of being Jewish, 80% say it’s an important part of their lives and 75% have a strong sense of belonging to the Jewish people.
I agree. These sounds like wonderful findings to me.

As often in these reports, there is a focus on intermarriage, and the typical tired assumption that Jews marrying non-Jews leads to children who aren't Jewish. In my personal experience, friends who have chosen to marry non-Jews are still working very hard to keep Judaism in their homes and their lives, and their kids are just as Jewish as any other Jewish kids that I know. I know this is not a representative sample by any means, but I still have the sense that intermarriage isn't going to be thing that ends Judaism in the U.S.  It may be that religion in general is becoming less important in the U.S.

I think what this survey describes that is fascinating is the phenomenon of Jews -- as well as many others in the U.S. of various faiths -- who identify in some way with their religion, but don't consider themselves religious per se. People in the U.S. are simply less religious these days, period. Or rather, they consider themselves less religious.

Which raises the question, what does it mean to be religious, anyway? In Judaism, there are certain behaviors that are typically considered religious behaviors: observing Shabbat (the Sabbath), keeping kosher, attending synagogue, involvement in Jewish organizations, schools, and social events. It may be that Jews who don't do these things regularly don't consider themselves religious.

I've often wondered: what exactly is the checklist that makes one religious or not? Is it lighting Shabbat candles? Fasting on Yom Kippur? Attending a Passover seder? If you do one of these things, but not all three, are you not religious?

Rabbi Leslie Gordon gave a wonderful sermon at our shul this winter in which she pushed us to reconsider what it means to be "religious." She proposed that if we are considering the world through a Jewish lens, and making decisions based on Jewish law and Jewish ideas, even if our choices of religious practice aren't typically Jewish, that we should still consider ourselves "religious."

So in the end, this may all have to do with definitions. Perhaps the questions in the Pew survey about being religious contained too narrow a definition. Or perhaps, as I proposed earlier, Americans are simply becoming less religious in general. However, I don't see this report as the death of the Jewish community in America. Rather, I see it as a success: Jews feel proud to be Jewish, part of the community, and being Jewish is important to them. Not too shabby at all.

Wednesday, October 02, 2013

The trouble with mammograms

Mammograms are often thought of as the first line of defense in the war on breast cancer. Many breast cancer organizations, such as Komen, pay for mammograms for women who can't afford them. On its face, this seems like a good thing. Why not screen women for breast cancer? It couldn't hurt, and it could only help, right? In fact, one of Komen Massachusetts’ goals is “committed to 100% screening. “

There are several reasons why mammography isn’t always a good idea. Whenever you start screening a population as opposed to individuals with a particular risk factor, you find a lot of things that aren't really problems, but once you find them, you have to do something about them. This is called over-diagnosis and over-treatment. Over-diagnosis and over-treatment is something that drives me absolutely crazy. Thousands upon thousands of women are diagnosed with DCIS (ductal carcinoma in situ, or stage zero breast cancer) and treated with surgery, radiation, and hormones for cancers that, in some cases, could just be left well enough alone. The big problem right now is that we have no way of predicting which cancers will go on to cause harm, and which ones are slow growing and will probably not cause harm. So we have to treat everything as if it's harmful. That's over-treatment.

On the other side of the spectrum are women with dense breasts for whom mammography isn't that useful. The density makes it hard for the radiologists to see the abnormalities. This creates a false sense of reassurance when in actuality, a tumor is growing.

Mammograms are not the be-all, end-all that we've been led to believe. They are a tool, and for some women, especially those whose breasts aren't dense, they can be a good tool to detect tumors that are too small to feel.

For younger women, however, whose breasts tend to be dense, mammograms aren't so great. About 40% of women have dense breasts. For these women, breast MRI and/or ultrasound may be a better choice. (Here is a great article on breast density.)

I am one of those "dense-breasted" women. Because my mother had breast cancer at 47, I was considered at high risk, so I had yearly mammograms from my mid-30s through my 40s. Some years providers would find a lump, and do some additional testing, and then send me on my way. "Everything is fine," they'd say. Until it wasn't.

My breast cancer was discovered by my primary care doc who was doing a physical exam of my breasts. There was a firm lump in my right breast that she hadn't felt 6 months before, and which hadn't been there when I had my last mammogram. The thing is, breast cancers take 8 or 10 years to grow in a breast, so my cancer had been there for a quite a while, undetected by mammography.

According to Archie Bleyer and H. Gilbert Welch, two physicians who wrote a recent article in the New England Journal of Medicine, increased screening over the past 30 years in the U.S. has led not to decreased mortality (breast cancer deaths) but to increased over-diagnosis, which is to say, many women (about 30 percent) whose cancers would never have caused harm have been treated for those cancers with guns blazing (over-treatment).

I worry that I was one of those over-treated women. If my cancer was really there for 8 or 10 years and not causing any problem, and not spreading, did I really need 2 surgeries, radiation, hormonal therapy and all the rest? It's not that I'm not grateful for the care I received. It's that I wonder whether it was all necessary.  Right now, there is no way of knowing.  Hopefully some day we will know, and can avoid over-treating women. Women -- like me.

Tuesday, October 01, 2013

Open and shut

Today the U.S. federal government shut down, and the Affordable Care Act Health Insurance Marketplace opened. And even though it's October 1st, the official start of breast cancer awareness month, there's been much less pink than in past years. So far. Which is a good thing.

More tomorrow...

Monday, September 30, 2013

Sneakers with pink ribbons, and frustrations

Walking the track this morning at the JCC (I'm trying), I noticed that the woman in front of me was wearing sneakers with tiny little pink ribbons imprinted on them. Those little pink ribbons reminded me that tomorrow is October 1st, the first day of what we in the breast cancer community refer to as "Pinktober" or "national breast cancer industry month," or as most people know it, "breast cancer awareness month."

I was diagnosed with breast cancer just under five years ago. I was lucky: my cancer was localized and hasn't spread, and I have a very good chance of living a long life. Some women I know aren't so lucky. Their cancers had already started to spread, or metastasize, when their breast cancer was discovered, or their cancer metastasized soon after they were diagnosed, or even much later, and it's metastasis that will kill you, not the tumor itself.

But I'm getting ahead of myself.

In the five years since my diagnosis, I've been through treatment, complications from treatment, recovery from the complications of treatment, some relatively good years with only hot flashes, and now...well, I'm still here. But I'm still frustrated.

Still frustrated with a country in which football players wear pink for "awareness," but in which we cannot figure out what is causing this epidemic of breast (and other) cancers.

Still frustrated that the focus is on mammograms and early detection, and millions of women are discovered to have early cancers and are treated, yet the women whose cancers have already spread still exist in the same numbers as 40 years ago, and their rates of death are not decreasing (more on this in a later post).

Still frustrated that breast cancer awareness is seen as a goal. Who is not aware of breast cancer?

Still frustrated by the numbers of women that I know are diagnosed with breast cancer. It's a growth industry.

Still frustrated that the anxiety of waiting for test results related to breast cancer isn't regarded as harmful. It's been proven to be quite harmful (more on this in a later post). 

Still frustrated that hospitals are building beautiful new cancer centers to meet the increasing needs of patients, more and more of whom are getting cancer... Why not prevent cancer instead?

So I've decided to blog each day in October about something related to breast cancer. About my own experiences. About research I find interesting. And some other stuff. Join me?


Saturday, July 27, 2013

Knowing Anne Frank (D’var Torah for Eikev)



When you first walk in the house, the stairs are very, very steep. The house is surprisingly small, dark, and almost completely empty. You aren’t sure what you were expecting. But it’s so bare. There is no furniture. Then you start to see things on the walls: the place on the wall where the Franks measured the growth of Anne and Margot; the clippings of movie stars that Anne pasted on the wall of her room with glue; and suddenly it becomes very, very real. They really were here, for two long years, never leaving, never going outside, keeping quiet all day so no one would hear them, hiding, trying to save their lives against all odds.

I recently had the opportunity to travel to the Netherlands, and while in Amsterdam, I had the privilege of visiting the Anne Frank House, as it is now called. It is the narrow building that held the offices of Anne’s father, Otto, on the first two floors, and above was the secret annex that housed the Franks and four others as they hid. It is now a “living museum,” a very simple place, but with a line hundreds deep waiting to get in at any moment of the day. One million visitors go there a year. Why?

The researcher and reporter in me wanted to interview people in line and find out why they were there. I didn’t, but I wish I had, and I hope I have a chance to do so someday. There were families with children in tow, school groups of teenagers, young people, older people, tourists and locals, all there to see this terrible piece of history. I don’t really understand why so many were willing to stand in line for an hour to see this place, but they were.  They waited with little complaint, even though the line was long and the day was hot. They entered quietly, reverently. They looked at the displays, at Anne’s words written on the walls. They watched the videos, testimonies from those who were there, helpers, friends of the Frank’s. And at the end, they viewed the horrible, neatly typed  yellow cards, one for each Frank family member, noting the date of their arrival at a concentration camp.

There is something about the small details that I found the most painful.  The growth chart. The clippings pasted to the walls. The stairs leading to Peter’s attic room where Anne had her first kiss. The bookcase that blocked the stairs to the secret annex, thick books on its shelves.  The blue and white porcelain toilet. The red and white checked diary lovingly placed on a black cushion and encased in glass. Samples of Anne’s neatly handwritten pages. The yellow cards.

What’s unique about the Anne Frank House is that it represents a very personal story. It’s not a large, impersonal  accounting of Hitler or the Third Reich or the Holocaust, but instead a very small story, a particular story, about a young woman and her family, and how they tried their best to survive during a terrible time in human history. I think the fact that it is just a tiny sliver of the whole makes it understandable, able to be comprehended. The whole is much too big and horrible for our brains to comprehend.

This week’s parshah, Eikev, along with many other verses in the Torah, implores us to help the vulnerable in our world. It says in chapter 10, verses 18 and 19: G-d upholds the cause of the fatherless and the widow, and befriends the stranger, providing him with food and clothing. You too must befriend the stranger, for you were strangers in the land of Egypt.

In a commentary by Rabbi Salomon Gruenwald  on MyJewishLearning.com, Rabbi Gruenwald says that the Torah gives us two reasons for caring about and having empathy with others:  the first reason is we should do it  to emulate G-d, and the second reason,  because we as a nation know what it means to be oppressed.  Rabbi Gruenwald asks: given that we have these two good reasons, why do we so often fail to meet these ideals? Why is it so hard to help the stranger?

Rabbi Gruenwald posits that the choice of words in this verse gives us a hint. It doesn’t say befriend the poor, but rather it says befriend the stranger. He says : “we have trouble identifying or empathizing with those who are far away, and who live lives so different from our own.”  The Torah realized this, and therefore set out this commandment from G-d to correct this inclination.

This, I think, is why one million people a year line up to see the Anne Frank House in Amsterdam.  People have trouble empathizing with 6 million Jewish strangers, and 5 million others, who were killed in the Holocaust. But they don’t have trouble empathizing with one young girl who shares her very ordinary daily life and longings with us through her diary. In this way, Anne is no longer  a stranger, and people are able to befriend her, to know her, and in this way, to understand the larger story.

Shabbat Shalom.