Good Deeds, Good Science: Autism Research Foundation

Happy Leap Day!

How often have you wished for an extra hour or extra day to get everything you need done? At the Autism Science Foundation (ASF), we want to make the most of this special leap day by using it to help autism science leap forward.

Thanks to your support, for the last two years we have provided funding for autism stakeholders (parents, individuals with autism, teachers, students, etc) to attend the International Meeting for Autism Research (IMFAR). All donations made today, February 29, 2012, will go directly to our IMFAR Travel Grants program, helping us provide more scholarships to IMFAR 2012 in Toronto where they will share their real world autism experience with scientists. These stakeholders will then bring the latest autism science back into our communities helping the science take a giant leap forward.

After attending IMFAR, past grant recipients have:
- Organized a five day autism science seminar at Barnard College
- Presented critical autism research information to nurses in Philadelphia
- Produced multiple blog posts that reached thousands of readers around the world
- Organized an autism awareness club and speaker series at Yale College

And thanks to a generous donor, all donations made today (February 29, 2012) will be matched dollar for dollar for an extra big leap. 

Do something special with this extra day of 2012 and help leap science forward. Please make a donation today!

BTW - It’s no coincidence that applications for our IMFAR travel grants are due today. Thinking of applying? Click here to learn more.

The Autism Science Foundation was founded in 2009 as a nonprofit corporation organized for charitable and educational purposes, and exempt from taxation under section 501(c)(3) of the IRS code.
The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The Only Mother’s Day Gift Guide You Will Ever Need

Our mothers were nothing like either of these people. (Source)

(Warning: We are having some fun, so what you are about to read does not explicitly contain science but does reference soy, onanism, tubed meats, and vacuums. In keeping with the DXS mission, however, we have embedded a little science here and there in the links. )

While the celebration of mothers is not a new concept, the modern version of Mother’s Day is a far cry from the ancient festivals that honored Cybele.  However, in 1907, when Anna Jarvis invented the modern Mother’s Day as a means to pay homage to her own mother, it was not her intention to use moms for profit.

But, alas, by the 1920s, this well-intended national holiday quickly morphed into the cash cow we see today.  Sure, it is nice to receive a gift, but perhaps capitalism has since stripped Mother’s Day of its original meaning, and for the first week or two in May, we are bombarded with advertisements that claim to know what item every mother must have.  


From this, many sites have done us all the great favor of curating these cannot-live-without gifts into a single, easy to navigate list (financial kickbacks notwithstanding), often broken down into natural June Cleaveresque categories like “kitchen” and “for the home” (read: how to cook for everyone and keep shit clean). Besides the fact that these lists can be generalized to every gift-giving holiday for the lovely lady in your life, even Don Draper himself would scoff at many of these suggestions.  

Because we at DXS wish to ensure that your Mother’s Day experience is the best it can possibly be, we present you with a different kind of list – one that provides the most valuable unsolicited advice you will ever receive when it comes to choosing for dear old mom.  Here, you will be schooled on what not to get for the woman that gave you life.   

  1. Flowers. One of the most suggested gifts for Mother’s Day is flowers. What woman doesn’t love flowers? Well, one who does not need one more thing to water, or sees her own mortality in each dried up petal aimlessly floating down onto the floor that had just been cleaned. Oh, and those tears you see building up in our eyes? Not tears of joy. You better back up or you might get caught in a sneezing fit of fury because, frankly, the last thing we want to do on “our” day is pretend that we like feeling like our heads will explode. And let us not forget how those flowers came to be available in your local flower shop or supermarket in the first place… from Colombia?

  1. Soy Candles.  Soy. For the last decade or two, we have seen the magical benefits of this plant product popping up in pseudoscientific “reports” in quality magazines like First for Women. And now, soy-pushers all over the intertubes will willingly exclaim that soy is the superior material for the production of candles, allegedly “soot free” (they aren’t really). Sure, anything soy-based will help the American Soy Farmer keep up with the Joneses, but a candle is a candle and unless you are also giving me a golden ticket to enjoy its inherent ambience whilst I soak in my imaginary claw-footed tub, full of bubbles and rose petals and the sultry sounds of Barry White, save it. Plus, I’d rather not burn my house down (again).

  1. Gift Baskets! What says “I admire you like a work colleague” more than a gift basket?  Sure, smoked cheeses and tubed meats taste fine after a few martinis, but when enjoying such delicacies, I prefer to do it while watching my co-workers photocopy their ass cheeks. Some things just don’t have the same effect in the home.  

  1. Teething Necklace. One website was flashing necklaces all over the place – but these weren’t just any old necklaces – they doubled as teething necklaces for the baby.  Anyone who knows anything about a teething baby knows that, despite the alleged pain babies feel (hey, I don’t remember it, do you??), moms suffer the most. So instead of the necklace, why don’t you go ahead and take the dang baby for a few hours and give me a much deserved break? I’ll even sweeten the deal and throw some Tylenol in the diaper bag. And, in the strange and rare event that I might want rope burn on my neck, I’d rather get it from some fantasy role-playing in the boudoir. Take that as you will.

  1. Vacuum Cleaner. If you really think that I want another reminder of how much I have to pick up after you and all of your friends – who regularly come over and wipe out all of the food I just deposited into my refrigerator – then yes, go ahead and buy me a vacuum. I mean, it is not like I don’t already spend all of my “free” time vacuuming the floors, so why not give me the gift that embodies what you really think of me (your maid)? Plus, Dyson has been showing commercials non-stop for a sale that runs until Mother’s Day, with the clear implication to get your mother (or if you are a mother to get yourself) a vacuum for Mother’s Day. So if you do decide to get a vacuum, make sure you have $500 for it. Remember, though, that a vacuum is really empty space, so you might want to consider getting me something more tangible–and fun.

  1. 50 Shades of Gray. Well, maybe I am not too opposed to this, but let it be known that I will probably need about ten minutes (give or take) of “alone” time after each time I pick up this series. As long as you are OK with this, I am OK with this. By the way, did you know that there are really more than 50 shades of grey?
We hope you will seriously consider this advice. After all, we really don’t need more shit to take care of, water, clean with, or… actually, we can always use some more good reads. Happy Mother’s Day!

To Everything (Turn Turn Turn) There is a Season

Today – June 20 – is the northern Summer Solstice, sometimes known as the Northern Solstice, “first day of summer”, or Midsummer’s Day, depending on where you live. It’s the longest day and shortest night of the year in the northern hemisphere (where I live), though exactly howlong or short depends on how far north you live. And of course in the southern hemisphere, today is is the shortest day and longest night, since the seasons are reversed.
The secret to the solstice and to Earth’s seasons in general involves the tilt of Earth’s axis. Our planet orbits the Sun in an elliptical path, which you can draw on a flat piece of paper: it doesn’t move “up” or “down”, but stays in a single plane known as the ecliptic. (The name “ecliptic”, as you might guess, is related to the word “eclipse”, since ancient astronomers determined eclipses of the Moon and Sun could only occur at certain places in the sky.) Earth’s axis is tilted compared to the ecliptic, and the axis points more or less in the same direction, wherever the planet is in its orbit. The axis points almost directly at Polaris, the North Star, which is why that star is a good navigational guide for those in the northern hemisphere: no matter what time of year, it’s always in the same spot in the sky. Other stars rise and set as Earth rotates, but not Polaris. (Unfortunately, there isn’t a South Star.)
As you can see from the diagram above, during about half the year, the North Pole points more toward the Sun, while it points more away for the rest of the year. Where I live, the Sun will never be directly overhead, even at noon. The farthest north that will ever happen is a special latitude known as the Tropic of Cancer – and the northern Summer Solstice is the day that occurs. On the northern Winter Solstice, which happens on December 21 or 22, the Sun is directly overhead at noon at the latitude of the Tropic of Capricorn.
Now we can see why summers are hot! In summer, the Sun rises earlier, sets later, and reaches a higher point in the sky. Those things combined mean extra sunlight, heating up the air and the ground longer. We can also see why I put “first day of summer” in quotes: the Solstice is the apex of the process, but the increase in daylight and temperatures begins long before June 20 (at least every place I’ve lived). The Midsummer’s Day festival, celebrated throughout northern Europe, acknowledges that; Shakespeare’s play A Midsummer Night’s Dream may have been written for the English version of the festival (though from what I can tell, the historical evidence is scant).
Similarly, during winter the Sun’s light comes in at a steeper angle and days are shorter, so the time for the ground to warm is greatly reduced. The northern Winter Solstice (also known as the Southern Solstice, “first day of winter”, Midwinter’s Day, or Yule) is the shortest day and longest night of the year in the northern hemisphere. On that day, the North Pole points as far away from the Sun as it ever does. We also have the reason the tropics are warm all year around: they receive about the same amount of sunlight during both summer and winter.
Approximately halfway between the solstices, the Sun appears directly overhead at noon at the Equator. On those days, everywhere on Earth gets about 12 hours of daylight and 12 hours of night. These days are the equinoxes, meaning “equal night”. (The spell to extinguish light in the Harry Potter books is “nox”, for what it’s worth. Yes, I remember such things. I’m still waiting for my “accio!” summoning spell, though.) The two days are known as the Vernal(or spring) and the Autumnal (or autumn) Equinox, again based on the seasons in the northern hemisphere. From an astronomical point of view, Earth’s “solar year” is marked between successive vernal equinoxes. (A second measurement of the year, known as the sidereal year, is measured with respect to the stars. These two year measurements are almost, but not quite, the same length!)
Now let’s put all of this together in a movie! (For some reason, the Sun – which was a gently glowing lamp in my original simulation – came out looking flat and boring in the final movie. I guess I still have more to learn about creating three-dimensional animations.) For best results, please view this full-screen.

On this Father’s Day, let’s remember the allofathers, too

A big brother, practicing the art of allofathering.

By Emily Willingham, DXS managing editor

On Mother’s Day, scientist and blogger Kate Clancy wrote an excellent post at Scientific American about allomothers, the people in your circle of friends and family who support mothers in their mothering. In thanking the allomothers in her life, Clancy included in that list her husband because men can be allomothers, too. Although this site is called Double X because we want to bring evidence-based science–and yes, some snark–to women, tomorrow is Father’s Day. So today, we’re shifting into XY gear and talking about allofathers. 

We all have or had fathers. Some for better, some for worse, some we may never have even seen. Many of us also have had other men in our lives who participated in a father role or who supported our fathers in the same way that Clancy writes about supporting mothers. The funny thing is, a Google search on “allofathers” confuses Google so badly that it actually declines to do that search and instead offers a search on “allomothers.” When you force it to search “allofather,” you get only three pages of scanty hits, some of which reference a more general “alloparenting.”

Why no love for the allofathers, Google? Fathers these days need allo support as much as mothers, or at least, the fathers I know do. As Paul Raeburn writes in this Father’s Day piece:

The grindingly slow recovery of the economy is making it hard for fathers to earn enough to help support their families. Those who do have jobs are working more hours, taking time away from checkers and family dinners. In many families, both parents are working, leaving less time for fathers and partners to work on their relationships with each other.

He notes that fathers these days thrive in a habitat that allows the time with family, time to do things other than make a living wage, although that remains an important feature of fatherhood and a key goal of every father I know. In fact, that emphasis means that my spouse–who is also the father of my children–is at work right now, on Saturday, after already putting in overtime through the week. Indeed, he may have to work tomorrow, on Father’s Day, and is looking at a midnight deadline Monday night. There will be no games of chess with Dad this weekend. 

The work is difficult enough and in a trying environment. And pushing against this need to work hard and keep a job is also a desire to have the kind of family time those of us in the United States have come to expect on weekends, particularly when we work salaried weekday jobs that ostensibly promise weekends off. That means that on top of the anxiety associated with stacking 20 or 30 extra hours onto a 40-hour work week to meet a tough deadline, my husband and my children’s father also feels angst about this inability to be a part of our family time. These are first-world problems, I realize, but that doesn’t make them any less real for us and our children.

So I’m allofathering for him. Yes, I’m the mother, but I’m also supporting my husband’s fathering role, in part by doing things that assure him that we’re all OK, and in part by doing things with our sons that people might think of as stereotypically “dad” activities: fishing, baseball, football, soccer, hiking. But I also have taken on the things he usually does around the house, like emptying the dishwasher Every Single Time, vacuuming, and doing the laundry. Bless the man, he usually does all the laundry. But I do miss the other allofathers in our lives.

We no longer live a stone’s throw or a short-ish drive from our extended family, but when we did and still when we visit, the allofathers are abundant. My children have uncles who take them fishing, monitor group infighting among nine cousins, catch snakes with them, play football and soccer with them, and take them on hikes and (fruitless) dove hunting. My husband does his share of allofathering for their children, reading books and playing with the youngest, making dinners, and serving as an ever-necessary playground monitor. And my children have a grandfather who builds things in his shop for them, closely monitors their BB gun target practice, wanders for hours with them in nearby woods to find animal bones, and patiently acknowledges every single mystifying LEGO construction and rambling imaginary story surrounding it.   

All of these alloparents expand the parenting and support and safety net for my children. They are the village raising my sons, and my children trust them implicitly. These allofathers summon up reserves of energy they probably didn’t know they had and in spending this time with their nephews or grandchildren, they add layers of complexity and different insights from father figures that my children wouldn’t otherwise have. They also model for children like my sons the many roles a man can have through life.

As humans, we fit several features of species that engage in this extra-parental parenting, including typically having a single offspring at a time, a relatively small number of offspring over a lifetime, and an extended period of parental investment, and being part of a highly social species with tight family bonds. It may be that as our culture evolves so that the father role expands into what was previously considered maternal territory, we need to more closely consider allofathers as well as allomothers. These factors that characterize us as an alloparenting species can add up to benefits and greater success for mothers and fathers and children alike. At any rate, I know that’s been the case in our family.

When I was growing up, I had four grandmothers and four grandfathers. Half of them were “step” grandparents, obviously, but I loved the fact that I had all of these grandparents, blissfully unaware in my childhood of the fractures and angst that had led to their presence in my life. Among these step-grandparents was the man who married my mother’s mother. They met over square-dancing, he a handsome architect, she a tiny, fiery single mother who could sew some kick-ass square-dancing outfits.

Through various unanticipated turns in Life’s do-se-do, after marrying my grandmother, this man one day became father to two of my cousins. From their early childhoods, he has been their father, even though for the rest of us cousins, he was our step-grandfather. Along with my grandmother, he committed himself to rearing them and being their parent, and today, in part thanks to his steady, calm presence, they are successful, happily married parents themselves. Without his stabilizing influence, their paths might have been much less straightforward. 

While what my step-grandfather did crossed over from alloparenting to being an actual father, my own children have a step-grandfather of their own who, I think, epitomizes allofathering. When we visit, he has a ready store of caps available for all the cap guns he buys them by the dozen (if you think there are a lot of guns in this post, there are; it’s Texas). He actually builds–builds–go carts and other motorized vehicles to take them buzzing around the large property where he and my mother live and maintains a fleet of bicycles for them to ride. He will drop anything to run a quick errand just because one of the youngest generation expresses a wish for a certain treat or toy. Ask him to make you an ax from a stick and a rock, and he’ll do it masterfully. He attends every volleyball, baseball, or basketball game my niece and nephew have and has simply been a steady and much-loved allofather figure in the lives of all of the youngest generation in our family.

When I think of men like these who enter into lives already structured around complex family interactions and who take on without comment or resentment the care and loving of the children in that family, I wonder if I could be as kind or selfless. Of course, I hope that I could. These little people are, after all, children, and they need love and support and classic grandparental spoiling and an understanding that parenting and parental love come in different forms and different ways of expression. To all the allofathers in my life, I–and my children–are extremely grateful. To all the fathers and allofathers out there, happy Father’s Day. And may I say, I think you all warrant more Google hits. 


***Special thanks to Kate Clancy for her post on allomothers and to Paul Raeburn for his post about the role of fathers today, which certainly drove my thinking about this topic.***

These views are the opinion of the author and do not necessarily either reflect or disagree with those of the DXS editorial team. 

From spiders to breast cancer: Leslie Brunetta talks candidly about her cancer diagnosis, treatment, and follow-up

According to Leslie Brunetta, she now has much more hair than she had last July.
We became aware of Leslie Brunetta because of her book, Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating, co-authored with Catherine L. Craig. Thanks to a piece Leslie wrote for the Concord Monitor (and excerpted here), we also learned that she is a breast cancer survivor. Leslie agreed to an interview about her experience, and in her emailed responses, she candidly talks about her diagnosis, treatment, and follow-up for her cancers, plural: She was diagnosed simultaneously with two types of breast cancer. 
DXS: In your Concord Monitor piece, you describe the link between an understanding of the way evolution happens and some of the advances in modern medicine. What led you to grasp the link between the two?

LB: I think, because I’m not a scientist (I’m an English major), a lot of things that scientists think are obvious strike me as revelations. I somehow had never realized that the search for what would turn out to be DNA began with trying to explain how, in line with the theory of evolution by natural selection, variation arises and traits are passed from generation to generation. As I was figuring out what each chapter in Spider Silk would be about, I tried to think about the questions non-biologists like me would still have about evolution when they got to that point in the book. By the time we got past dragline silk, I realized that we had so far fleshed out the ways that silk proteins could and have evolved at the genetic level. But that explanation probably wouldn’t answer readers’ questions about how, for example, abdominal spinnerets—which are unique to spiders—might have evolved: the evolution of silk is easier to untangle than the evolution of body parts, which is why we focused on it in the first place.

I decided I wanted to write a chapter on “evo-devo,” evolutionary developmental biology, partly because there was a cool genetic study on the development of spinnerets that showed they’ve evolved from limbs. Fortunately, my co-author, Cay Craig, and editor at Yale, Jean Thomson Black, okayed the idea, because that chapter wasn’t in the original proposal. Writing that chapter, I learned why it took so long—nearly a century—to get from Darwin and Mendel to Watson and Crick and then so long again to get to where we are today. If we non-scientists understand something scientific, it’s often how it works, not how a whole string of people over the course of decades building on each other’s work discovered how it works. I knew evolution was the accumulation of gene changes, but, until I wrote that chapter, it hadn’t occurred to me that people began to look for genes because they wanted to understand evolution.

So that was all in the spider part of my life. Then, a few months into the cancer part of my life, I was offered a test called Oncotype DX, which would look at genetic markers in my tumor cells to develop a risk profile that could help me decide whether I should have chemotherapy plus tamoxifen or just tamoxifen. The results turned out to be moot in my case because I had a number of positive lymph nodes, although it was reassuring to find out that the cancer was considered low risk for recurrence. But still—the idea that a genetic test could let some women avoid chemo without taking on extra risk, that’s huge. No one would want to go through chemo if it wasn’t necessary. So by then I was thinking, “Thank you, Darwin!”

And then, coincidentally, the presidential primary season was heating up, and there were a number of serious candidates (well, serious in the sense that they had enough backing to get into the debates) who proudly declared that they had no time for the theory of evolution. And year after year these stupid anti-evolution bills are introduced in various state legislatures. While I was lying on the couch hanging out in the days after chemo sessions, I started thinking, “So, given that you don’t give any credence to Darwin and his ideas, would you refuse on principle to take the Oncotype test or gene-based therapies like Gleevec or Herceptin if you had cancer or if someone in your family had cancer? Somehow I don’t think so.” That argument is not going to convince hard-core denialists (nothing will), but maybe the cognitive dissonance in connection with something as concrete as cancer will make some people who waver want to find out more.

DXS: You mention having been diagnosed with two different forms of cancer, one in each breast. Can you say what each kind was and, if possible, how they differed?

LB: Yes, I unfortunately turned out to be an “interesting” case. This is one arena where, if you possibly can, you want to avoid being interesting. At first it seemed that I had a tiny lesion that was an invasive ductal carcinoma (IDC) and that I would “just” need a lumpectomy and radiation. Luckily for me, the doctor reading my mammogram is known as an eagle eye, and she saw a few things that—given the positive finding from the biopsy—concerned her. She recommended an MRI. In fact, even though I switched to another hospital for my surgery, she sent emails there saying I should have an MRI. That turned up “concerning” spots in both breasts, which led to more biopsies, which revealed multiple tiny cancerous lesions. The only reasonable option was then a double mastectomy.

The lesions in the right breast were IDCs. About 70% of breast cancers are diagnosed as IDCs. Those cancers start with the cells lining the milk ducts. The ones in the left breast were invasive lobular carcinomas (ILCs), which start in the lobules at the end of the milk ducts. Only about 10% of breast cancers are ILCs.

Oncologists hate lobular cancer. Unlike ductal cancers, which form as clumps of cells, lobular cancers form as single-file ribbons of cells. The tissue around ductal cancer cells reacts to those cells, which is why someone may feel a lump—she’s (or he’s) not feeling the cancer itself but the inflammation of the tissue around it. And because the cells clump, they show up more readily on mammograms. Not so lobular cancers. They mostly don’t give rise to lumps and they’re hard to spot on mammograms. They snake their way through tissue for quite a while without bothering anything.

In my case, this explains why last spring felt like an unremitting downhill slide. Every time someone looked deeper, they found something worse. It turned out that on my left side, the lobular side, I had multiple positive lymph nodes, which was why I needed not just chemo but also radiation (which usually isn’t given after a mastectomy). That was the side that didn’t even show up much on the mammogram. On the right side, the ductal side, which provoked the initial suspicions, my nodes were clear. I want to write about this soon, because I want to find out more about it. I’ve only recently gotten to the place emotionally where I think I can deal with reading the research papers as opposed to more general information. By the way, the resource that most helped us better understand what my doctors were talking about was Dr. Susan Love’s Breast Book.  It was invaluable as we made our way through this process, although it turned out that I had very few decisions to make because there was usually only one good option.   

DXS: As part of your treatment, you had a double mastectomy. One of our goals with this interview is to tell women what some of these experiences with treatment are like. If you’re comfortable doing so, could you tell us a little bit about what a double mastectomy entails and what you do after one in practical terms?

LB: A mastectomy is a strange operation. In a way, it’s more of an emotional and psychological experience than a physical experience. My surgeon, who was fantastic, is a man, and when we discussed the need for the mastectomies he said that I would be surprised at how little pain would be involved and how quick the healing would be. Even though I trusted him a lot by then, my reaction was pretty much, “Like you would know, right?” But he did know. When you think about it, it’s fairly non-invasive surgery. Unless the cancer has spread to the surrounding area, which doesn’t happen very often now due to early detection, no muscle or bone is removed. (Until relatively recently, surgeons removed the major muscle in the chest wall, and sometimes even bone, because they believed it would cut the risk of recurrence. That meant that many women lost function in their arm and also experienced back problems.) None of your organs are touched. They don’t go into your abdominal cavity. Also, until recently, they removed a whole clump of underarm lymph nodes when they did lumpectomies or mastectomies. Now they usually remove just a “sentinel node,” because they know that it will give them a fairly reliable indicator of whether the cancer has spread to the other nodes. That also makes the surgery less traumatic than it used to be.

I opted not to have reconstruction. Reconstruction is a good choice for many women, but I didn’t see many benefits for me and I didn’t like the idea of a more complicated surgery. My surgery was only about two hours. I don’t remember any pain at all afterwards, and my husband says I never complained of any. I was in the hospital for just one night. By the next day, I was on ibuprofen only. The bandages came off two days after the surgery.

That’s shocking, to see your breasts gone and replaced by thin red lines, no matter how well you’ve prepared yourself. It made the cancer seem much more real in some way than it had seemed before. In comparison, the physical recovery from the surgery was fairly minor because I had no infections or complications. There were drains in place for about 10 days to collect serum, which would otherwise collect under the skin, and my husband dealt with emptying them twice a day and measuring the amount. I had to sleep on my back, propped up, because of where the drains were placed, high up on my sides, and I never really got used to that. It was a real relief to have the drains removed.

My surgeon told me to start doing stretching exercises with my arms right away, and that’s really important. I got my full range of motion back within a couple of months. But even though I had my surgery last March, I’ve noticed lately that if I don’t stretch fully, like in yoga, things tighten up. That may be because of the radiation, though, because it’s only on my left side. Things are never quite the same as they were before the surgery, though. Because I did have to have the axillary nodes out on my left side, my lymph system is disrupted. I haven’t had any real problems with lymphedema yet, and I may never, but in the early months I noticed that my hands would swell if I’d been walking around a lot, and I’d have to elevate them to get them to drain back. That rarely happens now. But I’ve been told I need to wear a compression sleeve if I fly because the change in air pressure can cause lymph to collect. Also, I’m supposed to protect my hands and arms from cuts as much as possible. It seems to me that small nicks on my fingers take longer to heal than they used to. So even though most of the time it seems like it’s all over, I guess in those purely mechanical ways it’s never over. It’s not just that you no longer have breasts, it’s also that nerves and lymph channels and bits of tissue are also missing or moved around.

The bigger question is how one deals with now lacking breasts. I’ve decided not to wear prostheses. I can get away with it because I was small breasted, I dress in relatively loose clothes anyway, and I’ve gained confidence over time that no one notices or cares and I care less now if they do notice. But getting that self-confidence took quite a while. Obviously, it has an effect on my sex life, but we have a strong bond and it’s just become a piece of that bond. The biggest thing is that it’s always a bit of a shock when I catch sight of myself naked in a mirror because it’s a reminder that I’ve had cancer and there’s no getting around the fact that that sucks.    

DXS: My mother-in-law completed radiation and chemo for breast cancer last year, and if I remember correctly, she had to go frequently for a period of weeks for radiation. Was that you experience? Can you describe for our readers what the time investment was like and what the process was like?

LB: I went for radiation 5 days a week for about 7 weeks. Three days a week, I’d usually be in and out of the hospital within 45 minutes. One day a week, I met with the radiology oncologist and a nurse to debrief, which was also a form of emotional therapy for me. And one day a week, they laid on a chair massage, and the nurse/massage therapist who gave the massage was great to talk to, so that was more therapy. Radiation was easy compared to chemo. Some people experience skin burning and fatigue, but I was lucky that I didn’t experience either. Because I’m a freelancer, the time investment wasn’t a burden for me. I’m also lucky living where I live, because I could walk to the hospital. It was a pleasant 3-mile round-trip walk, and I think the walking helped me a lot physically and mentally.
DXS: And now to the chemo. My interest in interviewing you about your experience began with a reference you made on Twitter to “chemo brain,” and of course, after reading your evolution-medical advances piece. Can you tell us a little about what the process of receiving chemotherapy is like? How long does it take? How frequently (I know this varies, but your experience)?
LB: Because of my age (I was considered young, which was always nice to hear) and state of general good health, my oncologist put me on a dose-dense AC-T schedule. This meant going for treatment every two weeks over the course of 16 weeks—8 treatment sessions. At the first 4 sessions, I was given Adriamycin and Cytoxan (AC), and the last 4 sessions I was given Taxol (T). The idea behind giving multiple drugs and giving them frequently is that they all attack cancer cells in different ways and—it goes back to evolution—by attacking them frequently and hard on different fronts, you’re trying to avoid selecting for a population that’s resistant to one or more of the drugs. They can give the drugs every two weeks to a lot of patients now because they’ve got drugs to boost the production of white blood cells, which the cancer drugs suppress. After most chemo sessions, I went back the next day for a shot of one of these drugs, Neulasta.

The chemo clinic was, bizarrely, a very relaxing place. The nurses who work there were fantastic, and the nurse assigned to me, Kathy, was always interesting to talk with. She had a great sense of humor, and she was also interested in the science behind everything we were doing, so if I ever had questions she didn’t have ready answers for, she’d find out for me. A lot of patients were there at the same time, but we each had a private space. You’d sit in a big reclining chair. They had TVs and DVDs, but I usually used it as an opportunity to read. My husband sat through the first session with me, and a close friend who had chemo for breast cancer 15 years ago sat through a few other sessions, but once I got used to it, I was comfortable being there alone. Because of the nurses, it never felt lonely.

I’d arrive and settle in. Kathy would take blood for testing red and white blood counts and, I think, liver function and some other things, and she’d insert a needle and start a saline drip while we waited for the results. I’ve always had large veins, so I opted to have the drugs administered through my arm rather than having a port implanted in my chest. Over the course of three to four hours, she’d change the IV bags. Some of the bags were drugs to protect against nausea, so I’d start to feel kind of fuzzy—I don’t think I retained a whole lot of what I read there! The Adriamycin was bright orange; they call it the Red Devil, because it can chew up your veins—sometimes it felt like it was burning but Kathy could stop that by slowing the drip. Otherwise, it was fairly uneventful. I’d have snacks and usually ate lunch while still hooked up.

I was lucky I never had any reactions to any of the drugs, so actually getting the chemo was a surprisingly pleasant experience just because of the atmosphere. On the one hand, you’re aware of all these people around you struggling with cancer and you know things aren’t going well for some of them, so it’s heartbreaking, and also makes you consider, sometimes fearfully, your own future no matter how well you’re trying to brace yourself up. But at the same time, the people working there are so positive, but not in a Pollyannaish-false way, that they helped me as I tried to stay positive. The social worker stopped in with each patient every session, and she was fantastic—I could talk out any problems or fears I had with her, and that helped a huge amount.

DXS: Would you be able to run us through a timeline of the physical effects of chemotherapy after an infusion? How long does it take before it hits hardest? My mother-in-law told me that her biggest craving, when she could eat, was for carb-heavy foods like mashed potatoes and for soups, like vegetable soup. What was your experience with that?

LB: My biggest fear when I first learned I would need chemo was nausea. My oncologist told us that they had nausea so well controlled that over the past few years, she had only had one or two patients who had experienced it. As with the surgeon’s prediction about mastectomy pain, this turned out to be true: I never had even a single moment of nausea.

But there were all sorts of other effects. For the first few days after a session, the most salient effects were actually from the mix of drugs I took to stave off nausea. I generally felt pretty fuzzy, but not necessarily sleepy—part of the mix was steroids, so you’re a little hyped. There’s no way I’d feel safe driving on those days, for example. I’d sleep well the first three nights because I took Ativan, which has an anti-nausea effect. But except for those days, my sleep was really disrupted. Partly that’s because, I’m guessing, the chemo hits certain cells in your brain and partly it’s because you get thrown into chemical menopause, so there were a lot of night hot flashes. Even though I’d already started into menopause, this chemo menopause was a lot more intense and included all the symptoms regularly associated with menopause.

By the end of the first session, I was feeling pretty joyful because it was much less bad than I had thought it would be. By the second week in the two-week cycle, I felt relatively normal. But even though it never got awful, the effects started to accumulate. My hair started to fall out the morning I was going to an award ceremony for Spider Silk. It was ok at the ceremony, but we shaved it off that night. I decided not to wear a wig. First, it was the summer, and it would have been hot. Second, I usually have close to a buzz cut, and I can’t imagine anyone would make a wig that would look anything like my hair. My kids’ attitude was that everyone would know something was wrong anyway, so I should just be bald, and that helped a lot. But it’s hard to see in people’s eyes multiple times a day their realization that you’re in a pretty bad place. Also, it’s not just your head hair that goes. So do your eyebrows, your eyelashes, your pubic hair, and most of the tiny hairs all over your skin. And as your skin cells are affected by the chemo (the chemo hits all fast-reproducing cells), your skin itself gets more sensitive and then is not protected by those tiny hairs. I remember a lot of itching. And strange things like my head sticking to my yoga mat and my reading glasses sticking to the side of my head instead of sliding over my ears.

I never lost my appetite, but I did have food cravings during the AC cycles. I wanted sushi and seaweed salad, of all things. And steak. My sense of taste went dull, so I also wanted things that tasted strong and had crunch. I stopped drinking coffee and alcohol, partly because of the sleep issues but partly because it didn’t taste very good anyway. I drank loads of water on the advice of the oncologist, the nurses, and my acupuncturist, and I think that helped a lot.

During the second cycle, I developed a fever. That was scary. I was warned that if I ever developed a fever, I should call the oncologist immediately, no matter the time of day or day of week. The problem is that your immune response is knocked down by the chemo, so what would normally be a small bacterial infection has the potential to rage out of control. I was lucky. We figured out that the source of infection was a hemorrhoid—the Adriamycin was beginning to chew into my digestive tract, a well-known side effect. (Having to pay constant attention to yet another usually private part of the body just seemed totally unfair by this point.) Oral antibiotics took care of it, which was great because I avoided having to go into the hospital and all the risks entailed with getting heavy-duty IV antibiotic treatment. And we were also able to keep on schedule with the chemo regimen, which is what you hope for.

After that, I became even more careful about avoiding infection, so I avoided public places even more than I had been. I’m very close to a couple of toddlers, and I couldn’t see them for weeks because they were in one of those toddler constant-viral stages, and I really missed them.

The Taxol seems to be much less harsh than the AC regimen, so a lot of these side effects started to ease off a bit by the second 8 weeks, which was certainly a relief.

I was lucky that I didn’t really have mouth sores or some of the other side effects. Some of this is, I think, just because besides the cancer I don’t have any other health issues. Some of it is because my husband took over everything and I don’t have a regular job, so I had the luxury of concentrating on doing what my body needed. I tried to walk every day, and I slept when I needed to, ate when and what I needed to, and went to yoga class when my immune system was ok. I also went to acupuncture every week. I know the science is iffy on that, but I think it helped me with the side effects, even if it was the placebo effect at work (I’m a big fan of the placebo effect). We also both had extraordinary emotional support from many friends and knew we could call lots of people if we needed anything. That’s huge when you’re in this kind of situation.

Currently, I’m still dealing with some minor joint pains, mostly in my wrists and feet. I wasn’t expecting this problem, but my oncologist says it’s not uncommon: they think it’s because your immune system has to re-find its proper level of function, and it can go into overdrive and set up inflammation in the joints. That’s gradually easing off, though.

Most people don’t have it as easy as I did in terms of the medical, financial, and emotional resources I had to draw on. I’m very mindful of that and very grateful.

DXS: You say that you had “few terrible side effects” and a “very cushy home situation.” I’m sure any woman would like to at least be able to experience the latter while dealing with a full-body chemical attack. What were some factors that made it “cushy” that women might be able to talk to their families or caregivers about replicating for them?

LB: As I’ve said, some of it is just circumstance. For example, my kids were old enough to be pretty self-sufficient and old enough to understand what was going on, which meant both that they needed very little from me in terms of care and also that they were less scared than they might have been if they were younger. My husband happens to be both very competent (more competent than I am) around the house and very giving. I live in Cambridge, MA, where I could actually make choices about where I wanted to be treated at each phase and know I’d get excellent, humane care and where none of the facilities I went to was more than about 20 minutes away.

Some things that women might have some control over and that their families might help nudge them toward:

  • Find doctors you trust. Ask a lot of questions and make sure you understand the answers. But don’t get hung up on survival or recurrence statistics. There’s no way to know for sure what your individual outcome will be. Go for the treatment that you and your doctors believe will give you the best chance, and then assume as much as possible that your outcome will be good.
  • Make sure you talk regularly with a social worker or other therapist who specializes in dealing with breast cancer patients. If you have fears or worries that you don’t want to talk to your partner or family about, here’s where you’ll get lots of help.
  • Find compatible friends who have also had cancer to talk to. I had friends who showed me their mastectomy scars, who showed me their reconstructions, who told me about their experiences with chemo and radiation, who told me about what life after treatment was like (is still like decades later…). And none of them told me, “You should…” They all just told me what was hard for them and what worked for them and let me figure out what worked for me. Brilliant.
  • Try to get some exercise even if you don’t feel like it. It was often when I felt least like moving around that a short walk made me feel remarkably better. But I would forget that, so my husband would remind me. Ask someone to walk with you if you’re feeling weak. Getting your circulation going seems to help the body process the chemo drugs and the waste products they create. For the same reason, drink lots of water.
  • Watch funny movies together. Laughter makes a huge difference.
  • Pamper yourself as much as possible. Let people take care of you and help as much as they’re willing. But don’t be afraid to say no to anything that you don’t want or that’s too much.

Family members and caregivers should also take care of themselves by making some time for themselves and talking to social workers or therapists if they feel the need. It’s a big, awful string of events for everyone involved, not just the patient.

DXS: In the midst of all of this, you seem to have written a fascinating book about spiders and their webs. Were you able to work while undergoing your treatments? Were there times that were better than others for attending to work? Could work be a sort of occupational therapy, when it was possible for you to do it, to keep you engaged?

LB: The book had been published about 6 months before my diagnosis. The whole cancer thing really interfered not with the writing, but with my efforts to publicize it. I had started to build toward a series of readings and had to abandon that effort. I had also started a proposal for a new book and had to put that aside. I had one radio interview in the middle of chemo, which was kind of daunting but I knew I couldn’t pass up the opportunity, and when I listen to it now, I can hear my voice sounds kind of shaky. It went well, but I was exhausted afterwards. Also invigorated, though—it made me feel like I hadn’t disappeared into the cancer. I had two streams of writing going on, both of which were therapeutic. I sent email updates about the cancer treatment to a group of friends—that was definitely psychological therapy. I also tried to keep the Spider Silk blog up to date by summarizing related research papers and other spider silk news—that was intellectual therapy. I just worked on them when I felt I wanted to. The second week of every cycle my head was usually reasonably clear.

I don’t really know whether I have chemo brain. I notice a lot of names-and-other-proper-nouns drop. But whether that’s from the chemo per se, or from the hormone changes associated with the chemically induced menopause, or just from emotional overload and intellectual distraction, I don’t know. I find that I’m thinking more clearly week by week.

DXS: What is the plan for your continued follow-up? How long will it last, what is the frequency of visits, sorts of tests, etc.?

LB: I’m on tamoxifen and I’ll be on that for probably two years and then either stay on that or go onto an aromatase inhibitor [Ed. note: these drugs block production of estrogen and are used for estrogen-sensitive cancers.] for another three years. I’ll see one of the cancer doctors every three months for at least a year, I think. They’ll ask me questions and do a physical exam and take blood samples to test for tumor markers. At some point the visits go to every six months.

For self-care, I’m exercising more, trying to lose some weight, and eating even better than I was before.

DXS: Last…if you’re comfortable detailing it…what led to your diagnosis in the first place?

LB: My breast cancer was uncovered by my annual mammogram. I’ve worried about cancer, as I suppose most people do. But I never really worried about breast cancer. My mother has 10 sisters and neither she nor any of them ever had breast cancer. I have about 20 older female cousins—I was 50 when I was diagnosed last year–and as far as I know none of them have had breast cancer. I took birth control pills for less than a year decades ago. Never smoked. Light drinker. Not overweight. Light exerciser. I breastfed both kids, although not for a full year. Never took replacement hormones. Never worked in a dangerous environment. Never had suspicious mammograms before. So on paper, I was at very low risk as far as I can figure out. After I finished intensive treatment, I was tested for BRCA1 and BRCA2 (because mutations there are associated with cancer in both breasts) and no mutations were found. Unless or until some new genetic markers are found and one of them applies to me, I think we’ll never know why I got breast cancer, other than the fact that I’ve lived long enough to get cancer. There was no lump. Even between the suspicious mammogram and ultrasound and the biopsy, none of the doctors examining me could feel a lump or anything irregular. It was a year ago this week that I got the news that the first biopsy was positive. In some ways, because I feel really good now, it’s hard to believe that this year ever happened. But in other ways, the shock of it is still with me and with the whole family. Things are good for now, though, and although I feel very unlucky that this happened in the first place, I feel extremely lucky with the medical care I received and the support I got from family and friends and especially my husband.
——————————————————————–
Leslie Brunetta’s articles and essays have appeared in the New York Times, Technology Review, and the Sewanee Review as well as on NPR and elsewhere. She is co-author, with Catherine L. Craig, of Spider Silk: Evolution and 400 Million Years of Spinning, Waiting, Snagging, and Mating (Yale University Press).