When celebrities get cancer

In case you've been living under a rock, you probably know that Good Morning America new anchor Robin Roberts was diagnosed with aggressive breast cancer 5 years ago.  While the good news is that she was treated and recovered from her cancer, the bad news is that she recently had a recurrence of cancer, called myelodysplastic syndrome, most likely a result of some of the breast cancer treatment.

I picked up Parade Magazine recently and started reading about  Roberts' "dream team" of "handpicked medical experts." Steam started coming out of my ears.

When the average person gets cancer, she don't have the ability to "handpick" her doctors. She doesn't have a ton of choice. She goes to the place where she gets her medical care, and hopefully she is close to a city where she can get decent medical care, and hopefully she has good insurance, and she gets what she gets.

When I was diagnosed with breast cancer, no one every asked me which doctor I wanted. The doctors were chosen for me. No one asked me what I wanted for treatment: I was so freaked out that I was willing to do whatever they said.

Today's revelation that actor Angelina Jolie has the BRCA1 gene and had a double-mastectomy in order to prevent herself from getting breast cancer in the future is a similar situation. Yes, women receive this test, and yes, sometimes they are counseled to have their breasts removed to prevent a future occurrence of breast cancer. But her experience seems far more pleasant and easy than the average woman's experience.

When I was going through breast cancer treatment, it was recommended to me that I have genetic testing. Because my mom had breast cancer at around the same age as me, there was a possibility that we had a genetic form of breast cancer.

The test itself is simple enough: it's just a tube of blood. But the results can have repercussions across your family.  If I was positive for BRCA 1 or 2, there was a possibility that my son, and my brother's sons and daughter, could also be affected. I found this possibility very scary.

And the options, if I had the gene, were bleak: either get a prophylactic double mastectomy, or increased surveillance.

In the end, I didn't have the breast cancer gene, so I didn't have to make that difficult choice. But I could have.

Jolie did have the gene, and she made the choice to have the surgery. In her editorial, she talks in glowing terms about the Pink Lotus Breast Center. This is how their website describes the care they offer:

At the Pink Lotus Breast Center, women enjoy the unique experience of holistic care linked seamlessly to the latest screening and diagnostic technologies, including state-of-the-art surgery. We believe that creating a haven of serenity promotes wellness. Knowing that our distinctive amenities and patient services promote the highest quality care allows our patients to relax and trust those treating them.

Once having visited a Pink Lotus Breast Center, our patients quickly feel a part of our family. Each takes home a renewed sense of hope, an understanding of her diagnosis, and a realization of our ultimate purpose: to save lives.

What makes us so different from the rest? Here are some of the top reasons: Family-owned, Family-funded, Predominantly female-run, No red tape, No committees, Freedom to make decisions that put the best interests of the patients first, No hospital, Non-profit partnership giving back to those in need, Technology-driven, Breast fellowship trained surgeons, Compassionate staff, Committed to improving on a daily basis. (italics mine)

Sounds almost too good to be true, doesn't it? A haven of security? Distinctive amenities? No red tape and no committees?

While Pink Lotus says on its website that it does take insurance, I am willing to bet my left breast (kidding!) on the fact that Jolie didn't receive the standard care that is paid for by insurance, but paid for extra special super deluxe care instead, since money is no object for her.  This is not the typical care that women receive.

Here is how she described her experience:

...I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.

Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.

Contrast this with the stories of more typical women on Breastcancer.org's discussion boards.  There is quite the discussion going on today about Jolie, both pro and con.  Many women on the boards were supportive of Jolie's decision, but felt that she minimized the double-mastectomy and reconstruction experience. One member commented: "She's not going to talk about clogged drains, incisions opening up, the squareness of the expanders, the scabs, or the scars (which are no doubt not truly 'small')."

I have no beef with Roberts or Jolie being public with their cancer experiences. This is a good thing. I do wish they would stop pretending that their celebrity status doesn't impact their medical treatment, because this is a flat out lie. Their celebrity definitely impacts their care, and most of us would not have the access to our choice of specialists, specialized or new treatments, and specialized care that they do. This is simply reality.

I wish both of them good health. I just wish that they would be honest with us, and with themselves, about the special kind of treatment they receive because of their celebrity status. Regular folks simply do not have the same experience.

The Why

So now we will try to find out why.

You know what I think? I don't think these guys were particularly smart or trying to make a statement.  I think they were just frustrated with their lives, and bored, like lots of young men in the world. I think the conversation went something like this.

"I have an idea. Let's blow up the Boston Marathon."

"What?"

"Let's blow up the Boston Marathon. Nothing big. We'll make some bombs. There are instructions on the Internet, it looks easy. People will be scared. It'll be fun. Whaddya think?"

"Are you crazy?"

"Probably, man, probably."

Strange week

This has been a very strange week. To say the least.

On Monday, Marathon Monday, I was at work at a staff meeting and things seemed fairly normal.  Then suddenly, around 3 pm, hundreds of ambulances and police cars started racing down Huntington Ave. What was going on? we wondered. Someone from my office informed us that there were bombings at the Marathon. Bombings? It didn't make sense. Who would bomb the Marathon?

That was just the beginning.

Three people were dead and hundreds wounded. People lost legs, feet. But no one came forward to claim responsibility. I started to think that it was just some stupid person who decided that it would be fun to set off bombs at the Boston Marathon.

The week progressed. We learned that the bombs were made from pressure cookers filled with shrapnel, nails, BBs. Crude but effective. On Wednesday there were rumors that a suspect was about to be arrested, but it never happened. A promised press conference was cancelled.

People started holding vigils, healing services. Even President Obama came to Boston on Thursday to attend a service. He gave an inspiring speech. It seemed like things were getting better. The healing had begun.

On Thursday night, the FBI revealed photos of two suspects: two young white men in hats, one black, one white. The photos were quite clear. I was sure that someone would recognize them and contact the police. Maybe it would all be over soon.

Overnight, I started getting alert messages from Harvard. Something was going on at MIT. Something was going on in Cambridge. By morning, the two suspects had robbed a convenience store, killed an MIT police officer, had a shoot-out with police that included bombs being thrown, and one of the suspects had died. By morning, Watertown and surrounding towns were in lock down. J's school was cancelled. Public transportation was stopped.  The hunt for the second suspect was on. Thousands of police and military flooded into Watertown and started a house to house search. It was feared that the suspect, like his brother, was wearing a suicide bomb.

We have basically been home all day with just a few breaks. Boston is basically a ghost town. They haven't found the second man.

This is insane.The world is insane. What is going on? Why do these things keep happening?

There is no clue as to why these two young men did this. And we may never know why. Which is the saddest thing of all.

Research is starting to drive me crazy.

I have come to the realization that research is starting to drive me crazy.

I know, I know. I've been all gung-ho about research for years. Trying to find out whether programs, projects, educational interventions actually work - we must do research to find out!

Well...I'm not as enamored these days. Let me explain.

When you are doing research about something very black and white, such as - does this drug work to help a person with such and such a condition - the results of the research are (mostly) clear. Yes, the drug works, or no, it doesn't. When you are doing research about an educational program, or about a public health program that has to do with behavior change -- what we in the biz call "social and behavioral research" -- sometimes the results are less clear. The program worked for some, but not for others. The program changed behavior a bit, but not enough to make a big different. Or the program's effects didn't last very long.

What's driving me crazy these days is all that these people are doing all this research, and I just don't feel like it's helping anyone in any meaningful way. Researchers do studies, assign groups to different "treatments," have control groups, put people through whatever intervention they are studying (improve diet, increase exercise, etc.) and then gather some results. The results show: folks improved their diet - a little bit. Folks exercised more while on the program. For a while.

And then there's the whole quantitative/qualitative divide. Lots of researchers administer surveys to their participants and they end up with numbers: x percent of the participants ate 5 servings of veggies each day. Y percent of the participants were able to name three things they could do to increase their physical activity. This is quantitative research. Qualitative research (which is my preferred mode) has to do with asking the participants more open-ended questions: what did you like about this program? What worked for you? What didn't? And why? Then you end up with much richer data about participants' experiences with the program.

But in the end...does any of this make anyone healthier?

Here's a recent example: I went to a lecture yesterday about a very interesting program called Micro-Clinics presented by a very smart guy named Daniel Zoughbie that uses the power of group relationships to change behavior. You can see a short video about it here.

So he was presenting with another guy, a School of Public Health researcher, and the researcher got so involved with the numbers and figuring out how to measure whether it was exactly this thing, the micro-clinics, that was causing the effect, or was it something else? And I felt like he was missing the point entirely.

You can't separate this stuff out. It's not like medicine. Each group is different, the dynamics are different, the teachers are different. Whether the micro-clinics work or not to change behavior is something that has to do with all these different variables mixed together. Research isn't going to be able to discover the exact thing that works. This project is about relationships, and what's great is, it seems to be working.

So I left that workshop discouraged. Maybe research isn't the answer after all. Or, at least, not for everything.

Picking a Pontiff

The newspapers have been awash in red capes and white robes and what looks like little red kippahs. No, it’s not Purim. The Catholics are choosing a new Pope!

For we Jews, this event is someone perplexing. There is no official head of the Jewish religion. There are different bodies within the major movements of Judaism that review and approve laws and changes in laws, and each synagogue or congregation has a rabbi who makes decisions for his or her community. But there is nothing in Judaism like a Pope.

So it's curious to us.

We know that we have weird rituals, too, like swinging live chickens over our heads on Yom Kippur, and beating lulavim on the ground on Hoshana Rabbah. But there is something about how public this conclave of cardinals has been; how suddenly the shiny red shoes and the billowy white robes have a certain, I don’t know, je ne sais quoi that is unexpected and kind of cool.

The Catholic Church has had its problems these past few years.  Seems that having all those young celibate men running things wasn’t such a good idea after all. The Church has a lot of issues with sexuality: celibacy, pre-marital sex, contraception, abortion, gay marriage, you name it, they don’t like it. I’m happy that the Jews – at least, the liberal Jews – are a bit more mellow about these issues. Jews are pretty much in favor of sex, and Judaism promotes a healthy attitude about sexuality, even with a wink to sex outside of marriage (see: tefillin dates).

I think the Catholic Church could learn a thing or two from Judaism about mellowing its attitudes towards sex. Clearly, the strictness of the past hasn't led to anything good. Looking toward the future, I hope the new Pope can figure out a way to solve some of the Church's problems, and maybe -- just maybe -- those little red kippahs will become a fashion statement after all.

D'var on Tu B'Shevat

You might not realize it, but today is not only Sisterhood Shabbat and Shabbat Shira, but it is also Tu B’Shevat– literally, the 15^th day of the Hebrew month of Shevat -  and it is the new year of the trees. It always seems so incongruous in New England, where spring is still far away, and the trees are often covered with snow.  But in Israel, it’s the beginning of spring. 

When I was growing up, my dad was the Hebrew school principal at Temple Emanuel in Newton, so most of my childhood memories of Tu B’Shevat revolve around packaging up what seemed like mountains of almonds, figs, dates, and little boxes of raisins into baggies for the Hebrew school kids. This was no small task since, at the time, there were about 600 or 700 kids in the Hebrew school there.  

Like most American kids in the 60s and 70s, we ate common fruits like apples and bananas all the time, but Tu B’Shevat was the only time of year we ate dates and figs. They were so chewy and so sweet, with a strange thick texture on your tongue. 

Another memory from the Tu B’Shevat is those little blue and white metal JNF boxes. I know they are still around today, and I found out from my research  that they have been around for over 100 years. We were encouraged to go around our neighborhood collecting money that would then be used to plant trees in Israel. 

My next Tu B’Shevat memory is from my time with the Progressive Chavurah, a religious and social group I belonged to in my 20s and 30s. That was the first time I experienced a Tu B’Shevat seder, the kabbalistic and delicious ceremony that involved eating many different kinds of fruits and drinking many different kinds of wine. If you’ve never experienced a Tu B’Shevat seder, I urge you to do so. There is something so wonderful about eating many many different kinds of fruits during the coldest part of the winter. It warms your soul. Not to mention the wine part.

Another fond memory is when my husband Arnie and I flew to someplace warm on Tu B’Shevat, and we took with us what we called “Tu B’Shevat Mix”, a combination of nuts, dates, raisins, and other dried fruits so we could have our own little Tu B’Shevat celebration on the plane.

In ancient times, Tu B’Shevat was really just a date on the calendar to help Jewish farmers establish exactly when they should bring their produce from recently planted trees to the Temple as first fruit offerings.  Once the second temple was destroyed, there were no more fruit offerings, and this holiday could have easily disappeared. However, it was revived in the 16^th century by the kabbalists (mystics) of Safed in Israel as a new ritual called the Feast of Fruits.  Somewhat similar to a Passover seder – but with less cleaning and rules – participants would read selections from the bible and rabbinic literature, and eat fruits and nuts associated with the land of Israel. According to the Torah, there are 2 grains  and 5 fruits associated with Israel, known at the shivat haminim, or seven species: wheat and barley, fruit of the vine (grapes), figs, pomegranates, olives and dates. Almonds were also included as almond trees were the first to blossom in Israel. The first Tu B’Shevat Haggadah was produced in 1753.

Now this custom is experiencing a renewal in the U.S. and elsewhere. In creating a Tu B’Shevat seder, you have lots of license, and you can really do anything you want, but most Tu B’Shevat seders have a basic structure in that they divide fruits into categories, according to their shell or skin – is it edible or not?, and whether they have a pit or core. For example, one category is fruit or nuts with a hard or inedible shell but an edible inner core. A second is a category in which the core is inedible, but the outside is edible. A third is those fruits that are edible throughout.

In addition, there are four cups of wine:  all white, white with a bit of red, red with some white, and all red. There are different explanations for this practice, most of which have to do with the transformation of winter into spring and summer, and all of them very tasty.

Thinking about the descriptions of the different fruit categories, what struck me is how these relate to human qualities or characteristics as well. 

The first category is fruits or nuts with an inedible outer shell and an edible inner core: examples are pineapple, coconut, orange, banana, walnut, pecan, grapefruit, pomegranate, papaya, brazil nut, pistachio, or almond.  Can you think of people who fit this description? Hard on the outside, soft on the inside? Joel Ziff, in his book Mirrors in Time, describes this type of person as someone “who has developed a shell to protect from real and imagined assault.” 

The second category is fruit with edible outer flesh and inedible cores: olive, date, cherry, peach, apricot, avocado, or plum.  Can you think of people who fit this description? Soft on the outside but tough on the inside. Ziff describes this as a stage in which we expose our vulnerability.

The third category is fruits which are edible throughout. These have no protective shells, and may be eaten entirely and include: strawberry, grape, raisin, fig, raspberry, blueberry, cranberry, carob, apple, pear.  Can you think of people who have no protective shell at all, who are soft and yielding both inside and out? Ziff describes this stage as one in which we are fully integrated,  we can both contain and express our feelings appropriately. 

According to one school of Kabbalah called Lurianic Kabbalah (which is a form of mysticism studied by the students of Isaac Luria), every living thing – people as well as fruits and nuts - hides within them a spark of the Divine Presence. In Jewish mysticism, human actions can release these sparks and help increase G-d's presence in the world. On Tu Bishvat, the kabbalists would eat certain fruits associated with the land of Israel as a symbolic way of releasing these divine sparks.

May our enjoyment of different types of fruits release new life and growth within us at this cold time of year, reminding us that spring will eventually come. And may our actions release divine sparks, increasing G-d’s presence in the world.

Shabbat Shalom

Links:

• Tu B'Shevat on MyJewishLearning.com
• A Tu B'Shevat Seder
• Another Tu B'Shevat Seder
• Wikipedia 

Reflection on four years

It's exactly four years since my breast cancer diagnosis in early January 2009, and I thought I'd take a moment for some reflection.

Since that time, I've endured two surgeries, radiation, daily doses of tamoxifen, taken part in a study that made me quite sick, dealt with multiple doctors and therapists in order to recover from that, joined the board of a breast cancer organization that had a good mission but bad karma, endured that for two years and then quit, and now...I'm not sure what I will do next. I have a scar on my breast and one under my arm from the sentinel node biopsy, tiny black "tattoos" on my torso from the radiation treatments, I'm in pseudo-menopause from the tamoxifen (hot flashes, putting on weight), and as far as I can tell I don't have breast cancer anymore. Although it could come back, and that's a fear that I have to live with for the rest of my life.

I am still firmly convinced that chemicals in our environment are causing the increase in breast cancer, in other cancers, and in all sorts of diseases and syndromes (ADD, ADHD, autism spectrum diseases, autoimmune diseases, etc.). The evidence points toward this. But because it is difficult to prove that this particular exposure causes this particular cancer or disease, most people just don't put two and two together.

On the flip side, I still think that many, many women are over-diagnosed with breast cancer and then over-treated (you can read about it here and here). That is to say, a small tumor is seen on a mammogram and because we don't have the capability yet of determining if this cancer will grow or stay put, it is treated with guns blazing (surgery, radiation, chemo, and even prophylactic mastectomy) even though it is probably not necessary.

"For mammography screening to work, it must take women who are destined to develop late-stage cancers and find them when they're early-stage," [says] Dr. H. Gilbert Welch... "Unfortunately, it looks like screening has had very little impact on the rate at which women present with late-stage cancer." 

In other words, all these breast cancers that we are catching early don't mean that women aren't progressing to late-stage cancer. It just means that more women whose cancers wouldn't have ever progressed are being over-treated. There are still plenty of women who are treated early and still go on to have metastatic disease. And people die of metastatic disease, not of breast tumors.

There are some organizations that I have found helpful in this journey. Breastcancer.org is a great place to go for solid information. I like using the discussion boards, too, although I find that the women there tend to opt for over-treatment instead of more conservative approaches. Breast Cancer Action is a great advocacy organization, and I like Breast Cancer Fund as well although I feel they are a bit too sure of themselves (i.e. ahead of the science) about the links between consumer products and breast cancer. Silent Spring is my favorite scientific organization, doing important research into the actual causes of breast cancer with an eye toward prevention.

I know lots of people who have had breast cancer, including some very young, and some who have died. I know some whose breast cancer metastasized and they don't know what will happen next. I know someone with ovarian and uterine cancer, who is in remission, but will never be cured. I know someone who died of lung cancer when her kids were teenagers, and she never smoked or had other risk factors. There is way too much cancer happening to people....way too much. And we still have so much to learn about cancer.

I'm grateful for my health, but angry about certain aspects of my experience, and even angrier about all the cancer that is happening around me. And I don't know exactly what to do about it.