Yea!, Life-Cise Supports Cycle for Survival - And It Was FUN!

I don't have any pics yet (forgot camera - bummer), but I had a great time this morning at Cycle for Survival. I was riding with my friends from Team Survivor NYC. It was a great turnout to raise money for rare cancer research at Memorial Sloan Kettering. And it was FUN!

I am lucky to have had a cancer that is well-studied. It may seem a little odd to describe any cancer experience as lucky, but I have benefited from some great research and breakthroughs. Research into some of the particular characteristics of my breast cancer (like Her2+) has resulted in powerful and effective treatments. In that way, I am lucky.

But about 50% of cancers are classified as "rare" or "understudied". These cancers often receive fewer research dollars, and therefore, have fewer treatment options.

I am happy to still be around and healthy enough to have done a little something to help. Thanks to the people who supported me (and rare cancer research).

And, while doing something good, I did something new - I had never done a spin class - and had a great time. It was tough; I pushed myself really hard - it's just what I do. But really fun to be working out in a new way. Fun, fun, fun.

Julie

Cycle for Survival

Hey everyone! This Sunday, Jan. 31, I'll be joining my friends at Team Survivor NYC for Cycle for Survival, benefiting cancer research at Memorial Sloan-Kettering.

Cycle for Survival was founded in 2007 by MSK patient Jennifer Goodman. Since then, Cycle for Survival has raised more than $2 million for research on rare and underfunded cancers.

I'll be riding the 11:00am shift. If you'd like to support me (and research at MSK), go to my Cycle for Survival page to donate.

Thanks.

Julie

All I Can Say Is WOW! - Diane Van Deren tries for Aconcagua, twice!

I came across an article in the Sports section of the New York Times today that is pretty interesting. OK, the article is from last week - I'm really not much of a reader of the Sports section, so I just now ran across it. And it has absolutely nothing to do with cancer, but it's really cool!

A team from North Face and doctors from the Mayo Clinic are in Argentina to climb Aconcagua, at 22,841', the highest peak in the Western Hemisphere. That is not the interesting part - lots of people climb Aconcagua - I've climbed Aconcagua (it's one BIG mountain!). What's interesting is that one member of the team is Diane Van Deren.

Diane is a regular competitor in endurance races: she's won the 300-mile Yukon Arctic Ultra, and run in the 430-mile version last year. But this is her first climb over 15,000 ft. And she's planning on doing it twice!

Diane began having grand mal seizures about 20 years ago. When she would feel one coming on, she would put on her running shoes and run out into the hills of Colorado. Running was her way of dealing with the seizures. It didn't cure the problem, but it kept them at bay temporarily. She would run for hours.

Over a decade ago, Diane underwent brain surgery to finally put a stop to the epileptic seizures. Doctors removed a portion of her right temporal lobe which stopped the seizures, but also destroyed much of her memory.

In this climb, she'll be accompanied by doctors from the Mayo Clinic who will be monitoring her physical and cognitive skills. Once they get back to base camp, Diane and veteran mountaineer, Willie Benegas, will do a speed ascent of the mountain. During this second climb, she will be monitored wirelessly by the doctors.

The doctors are interested not only in Diane and the limits of human performance, but in how performance is affected by the physical surroundings - altitude, cold, weather. She will be fully wired up so they can monitor her heart rate, respiration, blood-oxygen level, temperature, oxygen consumption and carbon dioxide production. They'll also be giving her tests to gauge how altitude affects her cognitive skills.

The team is currently on their way into base camp. You can follow their progress through the Mayo Clinic's blog or the North Face blog.

I look forward to reading the team's posts, and finding out what the doctors learn from all their tests.

As someone who loves climbing (and always suffers mightily at high altitude), I'm quite interested in the results. I have experienced the mind-numbing cognitive losses at altitude - I remember being quite confused by a tent at high camp (around 19,500').

Mostly though, I wish them all well, especially Diane. This will be an astounding feat. I wish them good weather, good health, strength, speed, and luck.

Suerte!

Julie

Heartbeats from The Heart Truth - The Heart and Stroke Foundation

Brief break to talk about heart health: Heart disease and stroke are often thought of as "men's diseases". However, women are actually more likely than men to die of a heart attack or stroke. In part, this is because women are less likely to recognize the symptoms and seek treatment quickly.

For my Canadian friends, I have a message for you from The Heart & Stroke Foundation: visit The Heart Truth for information and ideas for action about heart disease and stroke for women. The site has lots of information on warning signs, risk factors, and prevention. In addition, they are offering a program, Heartbeats, which provides tips and guidance for a healthier heart.

And starting Jan. 4, Canadian women who sign up for Heartbeats by March 2 will also be entered to win a trip for 2 to attend the Heart Truth fashion show at Toronto's LG Fashion Week in March. (and if one of you wins this trip, we want pics!!)

For those of you who are not Canadian, the site is well worth checking out anyway. There's a wealth of good information about heart health - something we should all pay more attention to.

In the mean time, for your heart: don't smoke (or quit if you do), maintain a healthy weight, lower your cholesterol if it's high, reduce your stress, and keep physically active!

Julie

How Exercise (Probably) Saved My Life

Today I'm turning over my blog to my friend and boss (yes, those two things can go together), Andrew Schulman. I've been saving this to post now at the beginning of the year. I think it's a good, positive story for a new year.

I hope you enjoy it and join me in wishing Andrew a very happy new year - we're so very pleased to be able to say that!

Julie

HOW EXERCISE (PROBABLY) SAVED MY LIFE
By Andrew Schulman

I've known Julie Goodale since 1996 when she started subbing as a
violist in my string quintet, the Abaca String Band. A year later I
asked her to be the principal player, one of the better decisions I've
made as a bandleader.

Julie is a force of nature as anyone who knows her knows well. She
has the single most easily identifiable laugh on Earth (possibly on
Mars as well). When the group plays summer concerts outdoors and
I have to park some distance from the stage I can easily locate it
when she has arrived before me by zeroing in on that laugh, even if
it's half a mile away. Seriously.

I remember well the night she informed me and the other players in
the group that she had been diagnosed with breast cancer. We were
performing for a membership event at the Met Museum in NY and
just before we started she told us about it. She was clearly scared
but also clearly up to taking on the challenge. And watching her
progress through all the stages of the medical journey was also a
lesson to me in how to be brave and resolute.

That was a good thing for me to have observed as this summer I
went through my own medical adventure.

In brief, a CT scan in July 2008 looking for something else (which
turned out to be no problem) revealed 2 cysts on my pancreas; one in
the head and one in the middle near the tail. A biopsy in late August
determined it was too early to know if the cysts were pre-cancerous
or benign, and a follow up scan was asked for and took place in June
2009.

In that scan it was observed that the cysts were unchanged, a good
sign, but something else showed up; a mass in the tail the size of a
walnut that four doctors considered to be highly suspicious for
pancreatic cancer. Pancreatic cancer has no symptoms until it is too
late, 75% of cases diagnosed are inoperable and the patient usually
dies within a year. The survival rate, living more than 2 years, of the
other 25% of cases is 4%.

We were able to find a highly renowned pancreas surgeon, Dr. Martin
Karpeh of Beth Israel Medical Center in NY, who fortunately accepted
our health insurance, the Atlantis Health plan of NY. The surgery
game plan was to go in first with a laparoscope to make sure it hadn't
spread; a CT scan is not able to determine that conclusively. If it had,
surgery was over. If not, then proceed to remove the mass and the
cyst next to it and bring them immediately to the pathologist to
determine if they were both cancerous. It was assumed the mass
was, but less clear if the cyst was too. If the cyst was cancer then
Karpeh would remove the rest of the pancreas, as it would be
assumed that the cyst in the head of the pancreas was also cancer.

Almost 4 hours into the operation (pancreas surgery is extremely
complicated which is why so few surgeons specialize in it) Dr. Karpeh
carried the 60% of my pancreas just removed to the pathologist who
did the frozen sections procedure. When finished he informed him
that there was no cancer, not in the mass or the cyst. I'd just dodged
a major bullet.

What I had was a rare inflammation, a combination of acute and
chronic pancreatitis, which looks exactly like cancer. Acute
pancreatitis has very painful symptoms, but they simply hadn't started
yet in my case.

Dr. Karpeh went back upstairs, put me back together, and while the
resident was dressing the wound he went to the waiting room to tell
the good news to my wife, who jumped for joy and then started cell
phoning all the family and friends she could. Then the next crisis
started. Dr. Karpeh was beeped and told to go immediately to the
ICU.

What had happened was that on the way to the ICU my body went
into total shock. Moments after I arrived there I was clinically dead
for a minute or so. I was resuscitated under the guidance of ICU
director Dr. Marvin McMillen and then put into a medically induced
coma for six days. Afterwards I found out from one of the nurses that
not a single doctor or nurse she spoke to in the ICU thought I would
survive during the first three days. However, by the end of the 3rd
day my body stabilized and I did in fact survive. (Either that or I died
and I am having a really cool dream in heaven (?) right now).

I also found out that several meetings had taken place that week in
the hospital, which I assumed were about why I had gone into shock.
I found out during my first follow up with the surgeon (2 weeks after
getting out of the hospital, I was there for 12 days) that the meetings
were about trying to figure out why I LIVED. BTW, they will never
know for sure why the shock happened, but the best guesses are that
there was an impurity in a blood transfusion, or some kind of allergic
reaction.

OK, here is the connection to exercise. Two weeks after I got home I
had my first follow-up visit with Dr. Karpeh. I asked him what his
opinion was as to why I survived the ordeal. He told me that they will
never know for certain but the likelihood was it was a combination of
fitness from exercise and genes. I also had several visits with an
endocrinologist, Dr. Jerome Tolbert, also of Beth Israel Medical
Center, and he expressed the same opinion.

Although I was about 50 pounds overweight, 230 pounds instead of
180 (I am now 195 heading to 180) I was very fit. I started going to a
gym 5 days/week a little over two years before the operation (at age
55) and I have two big dogs, 80-pound yellow labs, for whom I am on
a daily basis pack leader, main walker, and supreme tug o' war
combatant. That high degree of fitness combined with the strong
physical resemblance to my Grandpa Max who lived to 97 and looked
like a heavyweight boxer into his nineties seemed to tilt the scales in
my favor. And keep in mind it was as close a call as it could be for 3
days (and anyone who has been clinically dead and then resuscitated
will tell you what a pleasure it is to tell people how great they feel ever
since they died).

So, as far as I know, exercise saved my life. The first exercise I did
after being woken from the coma, the next day, was walking with a
walker in the ICU. I was supposed to do 2 minutes that day; I did 10.
The next day I was supposed to do 10, I did 30 and challenged every
doctor and nurse that walked past me to a race to the end of the hall.
Normally, after a stay in the ICU you spend a day or so in Step-Down,
a ward a little less monitored than the ICU. However, my recovery
was so fast that the doctors decided to skip that and I was put in a
regular room. Late in the afternoon of the second day there they told
me I was well enough to go home the next day.

The main exercise when I got home was walking the halls in my
apartment building, and to certain extent, playing the guitar. After 12
days in the hospital, 6 in a coma, I could barely move my fingers well
enough to play a simple piece. I was able to return to the gym a few
days a week after 3 weeks and 5 weeks later I was back there five
days a week, sometimes six - my favorite exercises are the ellipsis
and rowing machines. And the dogs still try and beat me at tug o'
war, Paco can sometimes win, I sometimes let Dolly win.

I was back at my steady engagement three nights a week at the
InterContinental Hotel in Manhattan five weeks after being wheeled
out of the hospital.

I had to stop drinking alcohol, I drank 2-3 glasses of red wine a night
for many years, and my diet has changed, I will never be overweight
again, and that combination of things along with the steady exercise
means I feel physically better now than I can ever remember.

No one knows what the future will bring, but I highly recommend
staying in good physical condition via exercise and proper diet.

It can save your life.

Cleaning For A Reason

I'd like to introduce you to a terrific service for women in cancer treatment: Cleaning for a Reason. This organization provides free professional house cleaning services to women during cancer treatment - any woman, any cancer. All you need is verification from your doctor that you are currently undergoing treatment.

This is a service that can really make in impact on a woman's life (and her family's). While managing all the doctors' visits and treatments, the side effects, and all the normal, non-cancer aspects of our lives, it is really easy to let the house-keeping go. It just doesn't seem as crucial as other things. But having a clean house does make a big difference!

I certainly could have used this back when I was in treatment! I'm not fabulous about house cleaning as it is. During treatment, it just seemed to explode around me. Can I just point out that if you're nauseous and have been up all night throwing up, cleaning the bathroom is just not what you want to be doing.... Friends and family can pitch in and help out, but if you are the one who normally does most of the cleaning, it's tough.

A few times, I did have friends who offered to do some cleaning. I actually did feel a little embarrassed about it at the time, but wow, was it appreciated!

I've just added Cleaning for a Reason to the Resource page on Life-Cise.com. I hope this organization can succeed in helping a lot of women maintain their homes during treatment.

Julie

One Step At A Time

I've been at the gym the last couple of days. As much as I love working out at the gym, if possible, I prefer to get my exercise outside. It's been cold here, but sunny, so I'd prefer going out for a hike or run and carrying firewood.

But my water heater is broken. I've spent the last couple of days cooped up inside trying to deal with it, so I've missed the beautiful sunshine. (no, it's still not fixed or replaced...it's complicated)

Instead, I've gone over to the gym after the plumber has gone and the sun has gone down. And besides getting to exercise, one of the really excellent features of the gym is their showers; they have abundant hot water!

The gym is packed right now. It's the first of the year. The gym is always filled with people and their New Year's resolutions.

The problem is, in a month, many of those people won't be there. And in three months, it will mostly just be the regulars again.

Resolutions, why are they so hard to keep? Shouldn't it be enough to have the good intention, take the first step?

Unfortunately, no. When it comes to our health, it takes more than that. It takes real change. But how?

I think many people join the gym because of a specific goal - usually losing weight. I'm all in favor of goals. I love goals; I need goals. But tying my healthy lifestyle to a number is not the healthiest goal. What happens if I don't reach that goal? What happens when I do?

Also, part of the problem is we sometimes expect that we can suddenly make a total change in our lives and then are disappointed when it's harder than we thought. I guess we tend to bite off more than we can chew.

I believe it's more realistic (and will have better long-term results) to make changes in manageable chunks. Yes, I have a goal. I know where I want to get to, but I focus on the every day components of that goal.

If I want to lose weight, I think about a reasonable weight and timetable (the long-term goal). Then I figure out what that means in the shorter term; it breaks down to x lbs per week or month. Then I pay attention to my choices each day (my immediate goal). I'm not perfect; I won't make the best choice every time. But overall, I can start to make better choices. I'll choose a salad and soup for lunch rather than a burger. I'll stir-fry some vegetables for dinner instead of a big bowl of pasta and a buttery sauce. I'll go for a walk at lunch or stop at the gym on the way home, even for a short workout.

I know there are people who believe that you must make sudden, abrupt change so that you see quick results. They believe that without immediate major results you won't stick with the change. I can see the reasoning, but (maybe it's just the way my brain works) I have had better luck with realistic, gradual change. Maybe that's because I'm more interested in long-term changes, a healthier overall lifestyle, not just a number on the scale.

I could be wrong about all this, but I've had very good results by making small daily choices. It's gotten me through cancer treatments. That's how I climbed Mt. Rainier one year after finishing a full year of treatment. That's how I've climbed many other mountains before and after cancer - having an over-arching goal, the mountain, but focusing on the small steps to get me there. And it's how I will continue to live my life.

So I will still be at the gym in three months time. I hope to see you there.

Julie

Some Reflections On The Past Decade

While out hiking today, I was reflecting on the past decade. It ended with everything falling apart: kitchen appliances, car, roof....

It began rather roughly, as well. I started the decade in 2000 by having a scary (scary for me, not for my surgeon) surgery to rebuild my neck after a taxi driver thought he'd like to play bowling with pedestrians. ("we can rebuild her; make her better than she was; faster, stronger..." - OK, so I watched too much TV as a kid.) After recovering from that, 2001 brought a breast cancer diagnosis.

Thanks to my excellent doctors, a bit of luck, and just maybe a little something from me, I'm still here to have the frustration of all my stuff breaking down. I am forever grateful for the care I received from doctors, nurses, and other staff. They've worked very hard to keep me alive (a quality I greatly appreciate in a person). I'm especially grateful to and fond of my surgeon, Sharon Rosenbaum-Smith, and my fabulous oncologist, Peter Kozuch. Without them, much of this last decade might not have been possible for me.

Compared to fixing a body with a serious illness or injury, it occurs to me just how easy it is to fix all of these other broken things. Cars, refrigerators, water heaters can all be replaced. All it takes is time and money, both of which can be in short supply in these tough economic times. But it's so very straightforward, even if annoying.

So the decade was sandwiched between breakdowns: my body and the objects that surround me. In between, were some years I'm very happy to have experienced. I played a lot of music. I had a couple of trips to India, the second to play the music of my friend Joel Thome and to work with the musicians and dancers of Darpana. I climbed Aconcagua (22,800'); did some ice climbing in Ouray, CO; skiing in Utah, Montana, New Mexico, Colorado, & my home mountains in the Catskills; and of course, rock-climbing (not enough though, it's never enough!). And thanks to my dear friend Lauren, a great cruise to Iceland filled with laughter (what's for breakfast, Brian?). Thanks to all who shared those adventures and good times with me.

And somewhere in there, I started Life-Cise. It's been a lot of work, sometimes frustrating, but it's given my life renewed focus and direction. I like to think that I've been able to help a few people, but I have also been touched by all of you. I am grateful for the friendships I have developed thanks to Life-Cise. I am frequently awed and inspired by you.

Of course, there have also been plenty of disappointments and heartbreaks. But I choose not to dwell so much on those.

So, what's in store for this next year/decade?

There will be changes to Life-Cise in the coming months: adding video content and additional services - I'll keep you posted.

There will be plenty of adventure and fun. There will be beauty and love.

And I know there will be difficulties. But this last decade has taught me that I will find the strength to deal with whatever the challenges are.

Julie

(now, no more of this sentimental stuff - tomorrow, back to exercise - maybe it's time for push ups!)