A Scarf of Fine Silk

Let it be torn, let it be broken, it is still a scarf of fine silk. ~ an Assamese proverb.

I've been thinking about beautiful things, about fine scarves, about Angelina Jolie.

How could I not? It's impossible to escape. I spent the past month in India, mostly in remote rural areas, mostly completely cut off from the outside world. And yet, I knew about Angelina's breasts. The moment I arrived in an airport (and had access to the internet again), breasts threatened to eclipse terror, border disputes, and unemployment. In the days since I've been home and struggling to get over my jet lag, I've been playing catch-up with all the comments and commentary.

I, of course, have been shocked by all the second-guessing of her decision - especially by people who have never had to make an impossible choice like that. Anyone who has had to enter this universe of cancer knows that, once you're here, there are no good choices. All options suck! She's a woman, she had breasts, she had information, she made the best decision for her - of all bad choices.

But it does raise topics that should be discussed.

* She had a clear family history that made the genetic testing appropriate. The BRCA test is not for everyone. It's not an appropriate test for everyone who's ever been nervous about getting breast cancer. I've had the test. I had it done to help me make some choices about my treatment, and to give my beloved nieces more information. Because their aunt had cancer in her 30s, they are forever at a higher risk. I wanted to give them as much information as possible about that risk.

* It's expensive. Insurance doesn't necessarily cover testing (it did in my case). She can afford a $3000 test; a whole lot of women and men who could use the information gained from that test cannot.

* She had access to great medical care and careful, thorough counseling. This, unfortunately, is not true for a whole lot of people in this country. Counseling is a vital component in the BRCA test. There is very little in the results that is totally clear. If you are positive - that's clear. But if you are negative, that doesn't mean the rest of your family is negative, just you. And there are often other genetic markers that show up in the results. Researchers recognize some anomaly, but they don't yet know what it means. The results are complicated. It is so important to have a good counselor who can explain it all and answer all your questions. But even with the best counseling, there is usually a very big grey area.

So Ms. Jolie got good counseling. I remember another news story about BRCA testing from a few years ago. I listened in horror to a story about a woman who was so traumatized by watching her mother-in-law die of breast cancer that she had genetic testing done. The results came back; she was negative, but she did have a number of other unclear markers. Based on that result, she had a bi-lateral mastectomy, and (if I remember correctly) had her ovaries removed as well. In addition, she was trying to convince her teenage and college-age daughters to do the same. Everyone should, but not everyone does have access to careful, thorough counseling and medical care.

In my case, I was negative, but there were some markers of unknown significance. Because my counselor had spent a lot of time with me before the test and after I had the results, I was able to make good use of the results. Because I was negative and therefore did not have a higher risk of ovarian cancer, I chose to keep my ovaries intact. My nieces are not at even higher risk for developing breast cancer, but they still know they must be vigilant.

* Making a decision to remove part of your body is a big decision - and it should be. No one makes it lightly. Yes, we are so much more than our breasts. Yes, we can and do go on and live vibrant, happy, productive lives (if we want). Yes, we are like a scarf of fine silk. But having body parts cut off is a big deal. And it continues to be a big deal. It's a big deal for the rest of our lives.

* All surgeries have consequences. We have mastectomies because we must, or we should, or we've decided it's our best option. But there are risks. It's major surgery. Because of the type of reconstruction I chose, my surgery was 10 hours. That's a long time to be under anesthesia and the knife. After, we may be at higher risk for lymphedema - swelling of the arm or trunk for which there is no cure. We may suffer loss of feeling, stiffness, frozen shoulder, tightness, loss of range of motion, weakness, and pain. Some of these things can get better with work and with time, but they don't really go away completely. (that's why I put so much emphasis on upper body work, especially the shoulders and upper back)

And those are the successful surgeries. There are very many surgeries that do not go so well - failures, infections, ruptures, more surgeries, more, more. I know of too many difficult, painful failures.

Some of the discussion of Ms. Jolie's choice sounds like she had a mole removed. It's so much more than that.

I had no choice. I cannot really imagine having to make the choice that she did. It seems like an impossibly difficult one. I wish the very best for her, and for anyone in that position. I am sure she made the best decision for her and her family. I wish that everyone could be given the tools to make as good a decision.

Julie

Ready, Set, Go!

I'm here in my comfortable little room in Darjeeling. Just back from dinner of some delicious Tibetan noodle soup. Now I've been unpacking and re-packing my bags. I leave tomorrow morning for the race, and need to reorganize so I take only what I need for the race.

I've spent the last few days walking the hills of Darjeeling and going for runs in the morning. I think Dar is about 6800 feet, which is enough to make this sea level girl short of breath. But my few days here have helped. I'm hoping I won't have such a hard time with altitude during the race.

I'm feeling nervous! I always do, but seriously disrupted training schedule is worrying me. I was training really well until I got sick. Then I had a couple weeks off while I recovered from my cough. I got in a little running before I left, but not much. The nine days I spent traveling in Assam and Meghalaya were wonderful (pics to follow when I get home - I saw tigers!!), but I was not running. Now, in the last few days before the race I've been climbing hills and running - not exactly a normal taper before a big race. (usually you want to taper off on training a little in the last week or two to give your muscles time to recover and your body rest.)

This is the strangest training plan ever! It's just the way things worked out.

And it's been cold and rainy up here - not what I was hoping for. My first day here, I stopped into a temple. The monk interrupted his chanting to talk to me (in English). When he heard what I was doing, he said he would pray for good weather. I thought he should add in some prayers for world peace also, but I'll take prayers for good weather!

But no matter what, I'm off to the races.

Off To The Races

Before I run my marathon this summer (for Above & Beyond Cancer), I have to run 70 miles. I leave today for India where I'll be running a 4-day, 70-mile race through the foothills of the Himalayas. First, though, I'll be spending a couple of weeks traveling around Northeast India.

Sounds pretty great, huh? Unfortunately, life doesn't always go as planned....

My training for this race was going quite well. I had reached a new level of my training; I was running 50-60 mile weeks. OK, truth - I didn't actually break 60 miles, just came right up to it and kissed it - 57, 58, 59, and that was it. That was all I had those weeks. They were tough weeks - right at my limit (for now). But I wasn't wrecked.

But then all of those sick people who insist on coughing and sneezing all over everyone finally got me. I got the flu - maybe this will teach me to remember to get a flu shot. Fever, cough, wheezing, the works. I had almost 2 full weeks of no running. As I've felt better, I've been running a few miles a day.  This time off, combined with probably not running much while traveling before the race, means I won't have trained for about a month. I'll just have to trust in my fitness. I know I've lost some, but I'm hoping I have enough of a fitness cushion to still let this be a fun event.

This is not what I planned.

But no matter. Life doesn't always go as planned. We change our plans and expectations. I'll run, I'll walk. No matter how slow I go, it will still be an amazing race. I'll have views of the high Himalayas whatever speed I'm moving. Life is still beautiful.

I will be posting as I can. And I will be wearing one of my new Life-Cise shirts when I race.

See you when I get back.

Julie

Stand Up Straight!

A few weeks ago, I was around a whole bunch of high school students and was struck by something. I think ideas of posture have changed - and not in a good way.

I kept seeing young healthy girls (and guys) walking around with a particular sway in their back: head forward and shoulders rounded. Not just overweight or out of shape girls. Even healthy and athletic girls stood that way.

A few days later, I was walking past the boutiques on Madison Ave. and saw the same posture on all the mannequins. And on models. I started noticing it whenever I saw pictures of celebrities. It's even in my email spam - "we can arrange for you to interview these important celebrities about how they get ready for swimsuit season/weddings/walking their dog...." They all look so deeply disinterested and ironic, and maybe like they're spending way too much time texting.

Slouching is in fashion apparently.

I'm not in favor of rigidly standing up straight. Stiff is not natural or healthy, either. But this particular posture is really problematic. It won't have dramatic effects in the short term, but long term - as in years from now - there is potential for a lot of needless suffering. All that fashionable and studied irony won't seem so ironic when  their backs hurt.

Our spines do have some natural curves. But when we exaggerate those curves, or add extra curves, we create unnecessary pressure on the spine. The same is true of our shoulders. The short-term effects may be nothing more than a little extra tension. However, over the course of years, that extra stress can cause pain and weakness. We can end up with pinched nerves which cause pain shooting down arms and in the neck, headaches, numbness. Over time, that can result in serious and permanent muscle weakness. And that results in loss of mobility and our ability to do things we want.

Sounds pretty dire, doesn't it?

I've been thinking about this a lot over the past few weeks because it relates to two areas of my life that are really important to me - music and cancer. And because I am obsessively independent and hate the idea of not being able to do anything for myself.

Because we hold heavy instruments that often cause us to hunch forward, musicians are well aware of the problems of that posture. We suffer the consequences - pain, tension, sometimes severe enough to interfere with our jobs. The same is true for breast cancer survivors.

That's why I'm fairly obsessive with my clients about working their shoulders and upper back. I've also worked with a number of musicians on the same thing. It's important to have adequate strength to counteract the tendency to round forward (whether caused by surgery, radiation, or a heavy instrument).

A really simple exercise to work the upper back and draw your shoulders back is the wing pinch.

Wing pinch: Strengthens muscles of the upper back and shoulder (rhomboids, trapezius,

serratus).
With your arms at your sides, bend your elbows to 90 degrees.  Hold your hands, palms up, slightly wider than your body, keeping elbows at your side (like you're holding a tray of brownies).  Draw your elbows back and slightly in toward each other, and squeeze your shoulder blades together. Hold for a few seconds, and release.

This is a super-simple exercise that you can do anywhere. Although easy, it's also very effective at countering all that rounded collapsing of the chest and shoulders.

I'm not advocating a return to those tortured attempts at walking perfectly straight with an encyclopedia on our heads - besides, no one even reads books anymore, let alone have encyclopedias. But standing just a little straighter  would be a good thing, especially if we plan on being around a while.

Julie

Can You Help Prevent Cancer?

If you could prevent cancer in someone else, would you? For your children? For your grandchildren? For a complete stranger?

The American Cancer Society is currently enrolling 300,000 participants in the Cancer Prevention Study 3 (CPS3). Enrollment began in 2006 and will end this year. Participants come from 32 states across the country.

This is the third Cancer Prevention Study. The first study, CPS1, took place in the '50s, and found the link between tobacco and cancer. CPS2, during the '80s, found a link between obesity and cancer. The current study seeks to better understand the factors that can cause or prevent cancer, like lifestyle issues, the environment, and genetic predisposition. These are important, meaningful studies. The information gained can change lives - can save lives.

They are looking for people who have never been diagnosed with cancer (not including basal or squamous cell skin cancer) who are between age 30 and 65. Participation involves going to an enrollment appointment where you will sign a consent form, have your waist circumference measured, and small blood sample taken. You will also fill out a survey. The whole thing should take around 20-30 minutes. At home, you will complete a baseline survey (should take about 30 minutes), and then periodic follow-up surveys (less time - 10-20 minutes).

ACS is currently enrolling people in my community, the Hudson Valley. There are 3 enrollment dates in May in Rockland County: May 7, 14, and 16. You can schedule your enrollment appointment at www.cps3hudsonvalley.org. Or contact me if you have questions - I'm helping ACS in their enrollment effort. If you're not in this area, you can find out if they are enrolling people where you live: www.cancer.org/CPS3.

If you've never had cancer, I hope you will consider joining. Or, if you have friends or family who fit the criteria, please pass the information along and encourage them to participate. It's not much time, but it has the potential to give a lot more time to someone in the future.

Julie

Running For A Change - The Million Dollar Marathon

I have been extraordinarily lucky. I live in a place where I had access to great medical care, at a time when there were some exciting new research developments, and was surrounded by friends/family/caring organizations that offered wonderful support. I want to do what I can to ensure that others can enjoy those same benefits if they are diagnosed with cancer.

Using my running obsession for good, this summer I'll be joining a group of 160 runners in one long relay across America - from sea to shining sea, one marathon at a time. We're all taking part in the Million Dollar Marathon to raise money for cancer research and support. The event is being organized by Above & Beyond Cancer (the fabulous folks who I had the very great pleasure of climbing Kilimanjaro with last year).

One of the things I love about this project is that it's getting all kinds of folks running. This is not a PR event for a bunch of super-fit athletes to show they care. This is just a group of perfectly ordinary people trying to do something extraordinary - raise one million dollars to fight cancer. Yes, there are seasoned marathoners. There's me, who can run a whole lot of miles, albeit slowly. But there's also a bunch of people who have never been runners, never run a race, never cared about running.

We're all just trying to make a difference.

Running has given me such pleasure in the last few years, so I am delighted to use that enjoyment to help, in some small way, make a change in the world of cancer.

I hope you'll consider making a donation. Or, if you want to get more involved, join my team - as a runner or a fundraiser (send me a message, I'll give you details). I promise we'll have fun!

You can also stop by my new Facebook group, One Step Closer. There I'll be offering various fundraising incentives over the next few months. There will be exercise, some music, and possibly some other surprises. For instance, if you make a donation today, April 13, you could get a personal training session with me. For $26, you can get a 1/2 hour session. $52 will get you an hour. Or buy several sessions. Donations will be made directly to the Million Dollar Marathon, and we'll set up a time. Not in NY? Give me as a gift:)

We have all been touched by cancer in some way; I dream of a day when that's no longer true. We need more research for new and better treatments. We need to find ways to prevent cancers. And we need better care and support for those who are fighting now.

Julie

Ripples

Most of us go through our lives without knowing how we affect others. Sure, we know that if we behave like a jerk we'll hurt our friend's feelings. If we scream at the flight attendant for pointing out that there is no room for our suitcase in the overhead bins, he's likely to get angry (and we may end up getting booted off the plane). Conversely, if we smile and thank the bank teller, she may feel a little happier.

That's not really what I'm thinking about, though. We're just going through our lives, making decisions, going to work, getting through the day in the best way we can. I'm thinking of the hidden effect that we rarely see - what happens after we leave the room.

My friend and music colleague Don sent me a note recently. Don is a fellow violist; he's up in Boston, but we get to work together a few times a year. He is also a recent convert to running. Over the last year or so, he's been asking me questions about running, getting motivated, and running. When I saw him last year, he was metamorphosed!

I write and talk about what I'm doing in the hope that maybe I might help to motivate someone else. Don was just doing what he was because it seemed like a good decision for his life. On Don's birthday, a friend of his sent him a note (excerpted):

Dearest Don,
On your birthday, I want to share with you how much good you spread in the world, sometimes without even realizing it. About a year ago you began running and when I saw you thereafter, you were transformed. I was so inspired and wished I could ever do such a daring and bold thing in my life. I have now been going to the gym for 6 weeks and can report that as of last Tuesday I was able to RUN for the first time since my 15 yr old was born. Even my 2 minute intervals are such a huge accomplishment for me, but you gave me hope. This is a big deal because I have recently discovered that my daughter has been feeling overwhelmed by my weaknesses.... This is a wake-up call for me and helping my body get strong is part of my standing up on my own two feet.... My mother always said that we never know where the ripples in the pond go out to, which are caused by our actions. Your ripples have touched my life and will help to improve my daughter's life as well. Have a wonderful birthday and thank you for the gift of You!

Our choices - good or bad - have an effect on those around us. We may not mean to, but the ripples that we create can change people. Thank you, Don, you inspired me this last week.

Julie