Category Archives: Uncategorized

Making a Difference Feels Great

I don’t have much time to write because I am BUSY recruiting teams and individuals for Cycle for Survival 2010 (cycleforsurvival.org). If you are reading this email and have not already signed up to captain or participate on a team, you have no right to be here!!

I wanted to briefly share with you a wonderfully touching and inspiring experience I had the other day. I went to the hospital to meet with a man who has been battling a rare cancer. This man received the sobering news that the chemo regimen he has been on for the past few months does not seem to be working as well as the Doctors had hoped. HOWEVER, he received some much-needed hope…rather than be told that there are no other treatment options to try, he is being put in a clinical trial for a new treatment, which is being funded by the money we raised from last year’s Cycle for Survival

I will not share his name to protect his privacy but these are some excerpts from the email his wife and sister sent me after our meeting:

It was so great to meet you yesterday. You are just as dynamic and full of life as your video. A ball of very positive energy! It was good for us to meet you ………just knowing that you made it all this way and continue to pave the path for the rest of us………..you gave us such hope and made us laugh too! Timing is everything and I am so glad you shared that moment with us…….as we learned of Plan B and that your fundraising event is changing lives. Nothing will make us happier than helping this cause.

 

Cycle for Survival is making a real difference! The dollars we are raising are giving thousands of people across the country more hope! THANK YOU for doing what you do….and keep it up over the next 8 weeks so we can make Cycle for Survival 2010 an even bigger success than in past years!

 

Celebrating 6 Months Cancer-Free

I absolutely love Arizona. I find the dry heat, the constant sun and the focus on health and well-being to be so energizing for me. I have always loved Scottsdale but over the past few years I have developed a very close, almost spiritual connection with this town. Since I started battling cancer in 2004, I have come to Scottsdale at least 1x a year for some R&R.; It’s amazing how much more energy I feel here! Even when I have been actively on treatment, I miraculously find so much more energy when I visit and feel so much more alive.

The irony is that I was in Arizona at a wedding when I felt my first cancer symptoms 5 years ago (Dave and I were playing tennis and I had to stop because I had sharp pains in my abdomen). I truly believe that I understand my body better when I am here. I eat well, I sleep great and I work out like crazy.
The past few days have been heaven! I was here for a conference and decided to stay an extra few days. The Marriott Desert Ridge is a beautiful hotel! It doesn’t hurt that Nickelodeon and Marriott have a formal business partnership so the hotel general manager was given a “heads up” that I was visiting (this translates to VIP status…everything from access to the concierge level club to heavily discounted spa treatments!). I enjoyed a pedicure and massage yesterday and tomorrow I am getting an 80 minute body treatment called the “Hydrating Drench”.
I had a “moment” today. I swam laps at 8AM when the sun was just beginning to shine. The pool was completely empty and the pool was “bathtub” warm. The “spa” music was playing on the speakers and there was fresh fruit waiting at my lounge chair when I completed my swim.
I realized in that moment that I truly feel strong…not just mentally tough after all that I have been through but physically strong. I feel like after 6 months of no chemo and no disease, my body is coming back.
Ahhh…I think I might need to stay here a bit longer!

Meg’s Courageous Battle

My dear friend Meg passed away yesterday. Fortunately, I was able to visit the hospital and tell her how profound of an influence she had on my life before she passed. I pray that she heard me.
This is my favorite picture of Meg although you can’t see her. She is the one with her back to the camera being hugged. Meg was such a powerful force that you couldn’t resist wanting to hug her and be a part of her aura.

The year was 2005 and she had just ridden cross-country with Lance Armstrong to raise awareness for cancer research. While she was riding in the Tour of Hope, I was in a hospital bed receiving my first round of chemotherapy. I was so scared and had no way to know how to handle what was ahead of me. Meg and I had not yet met but she sent me pictures and emails offering hope and guidance from every state she visited on her cancer tour.

Immediately after she returned, she came to meet me in the hospital and our “official” friendship began. The truth is, she had me at “hello” in her first email. I will forever be grateful for the impact she had on my life. She taught me so much in such a short period of time and I just wish we had more time together.

I thought the best way to pay tribute to Meg was to post what some of her friends and family have written about her. From Lance Armstrong via twitter:
Just heard that 1 of my Tour of Hope teammates, Meg Berte-Owen, passed today – what a loss. Rode across America on just 1 lung! May she RIP
. Some of my fondest memories of Meg were when I was no more than 4 or 5 years old. She was baby-sitting my sister and I and she let me run around in our back yard in my new spiderman pajamas. My parents never let me do such a thing (especially after taking a shower before bedtime!) so Meg won major points in my Meg played such an important role in my life. When I was overwhelmed with my cancer diagnosis and didn’t know what “hope” looked like, Meg walked into my hospital room and showed me…in her words, in her actions and in her heart. When it seemed like no one understand what I was going through, Meg always did. She always knew exactly the right things to say and guessed my thoughts, feelings and frustrations before I could even tell her. She became a mentor and a role model to me…and I know that she will continue to guide me going forward. She has forever changed my life for the better and I feel truly blessed to have known her…if only for a short while book. Another time, I remember that she let me watch Michael Jackson’s recently released “Thriller” video on MTV. My parents would not Jess or I watch MTV and although I had nightmares for weeks after watching the video, I thought Meg was so cool for letting us watch it. Having known Meg for my entire life, I have always been impressed with not only her courage and determinati on but her fun-loving and down-to-ear th personality. Not only in being an All-American in soccer, overcoming cancer, attending Harvard and HBS, working on top Wallstreet firms, but in being such a genuine, loving and special individual.

She was a thoughtful and caring person, one who will surely never be forgotten.

I’ve been thinking so much about Meg and about how I (all of us) can possibly take something positive away from all of this. I realized that since surviving her early battles with cancer when she almost didn’t make it, she must have realized that she had been given the gift of extra years of life. She also may have realized that she might not have the luxury of a long life. I think she really lived her life like someone who had been given a gift, and I think the best way to honor her (for me at least) is to try to live life like she did. She lived large and she loved life and that is what I want to do. May her memory be a blessing. “The real meaning in all of our lives comes not so much from the accomplishments that we list on our resumes but from the deep connections we make with other people. People who share themselves authentically with us, their yearnings, their failures, their courage, and their love.” – Maria Shriver

Today I am going to thank Courtney Smith Rae for introducing me to Meg Berte in 2003. We had coffee in Grand Central. Meg and I compared cancer war stories. Her story made mine sound like a bad hair day. SiX years ago, almost to the day, Meg wrote me this email: After I ‘survived’ I had three years of hell (and this was AFTER treatment). My intestine was mangled, I lost 30 pounds and the doctors didn’t know how I might be able to keep food down-I couldn’t get surgery to repair my intestine b/c of all the chemo. Then, one month after the other, both of my lungs collapsed when I was at HBS. I was so angry! I had endured years of treatment to keep being bombarded with issues, month after month…but, eventually things calmed down and the problems stopped.

My doctors say that I am an example of someone where everything can go wrong and I am stil here!! I think about your health all the time, and you seem to be responding to the tough stuff by living like a rockstar. I applaud you! Life is only today and whatever happens to either of us, we will always know that we lived lifetimes in whatever time we are allotted. You are my hero again and again. thank you Meg.

Meg’s story is in the Survivors chapter of “More Than 85 Broads”. She was a dazzling ray of sunshine. In 2005, she told me that she wanted to ride in the Tour of Hope with Lance Armstrong. Meg had become an avid cyclist and she really wanted to make the team but there were only 23 spots. I recently told a group of woman at Wharton that it’s not who you meet, it’s who you connect. I connected Meg to 85 Broads rockstar Karen Cook who was on Lance’s foundation board. Karen connected Meg to Lance and the rest was history. There is a phenomenal picture of Lance steadying Meg’s bIke at one point during the Tour of Hope. That picture is worth 1000 words. You are my hero Meg and always will be.

There are no appropriate words to adequately convey our feelings. Meg was a beautiful woman, both inside and out. So caring, so passionate, so bright. We admired her spunk, her selflessness, and the kindness she extended to our daughter, another “Cancer Chick.” We share a deep sadness with you, but we know Meg will live on in the hearts and memories of many.

Meg played such an important role in my life. When I was overwhelmed with my cancer diagnosis and didn’t know what “hope” looked like, Meg walked into my hospital room and showed me…in her words, in her actions and in her heart. When it seemed like no one understand what I was going through, Meg always did. She always knew exactly the right things to say and guessed my thoughts, feelings and frustrations before I could even tell her. She became a mentor and a role model to me…and I know that she will continue to guide me going forward. She has forever changed my life for the better and I feel truly blessed to have known her…if only for a short while.

Cycle for Survival 2010 Starting NOW!

It seems very appropriate that on the week I find out that my 5 month CT scan is clean (yippee!), we have launched the 2010 Cycle for Survival website. Both are milestones that I credit with saving my life: the CT scans are proof that I continue to thrive physically and the Cycle event I credit with my emotional survival.

Please check out cycleforsurvival.org and sign up a bike today! The MSKCC team has done a FANTASTIC job and the website is more beautiful and easier to navigate than ever. This year will be bigger and better than ever before…2 states, 3 official locations and over 500 teams will cycle for a cure. Any questions, please email me. I would love to have all of you there.

The event got some great press in Duke’s alumni magazine this month, check it out – jenduke.pdf. And we were on CBS this past Monday AM. Waiting to get the clip and will post that as well.

 

Great Weekend and Great Anniversary

Dave and I had a fantastic Labor Day Weekend. I took a few days off from work to “rebalance” and it was just what the doctor ordered. I had a few days to relax and catch up on sleep etc and then our nephews, Ben and Shaun, came and spent the night. We had so much fun going to the Mets vs. Cubs game, playing football in the park, visiting Madam Tussauds, taking a motorboat around NYC and having a pizza eating contest!

Labor Day was our 6 year anniversary! Sometimes it seems like just yesterday but most of the time it feels like Dave and I have been married a lot more than 6 years. We have been through so much together that I feel like we were both very different people when we got married. We had a great day! The weather was beautiful. We slept in and then took a leisurely walk all around Manhattan. We had a 2pm brunch downtown and just spent the day connecting. It was my favorite anniversary so far 🙂
I have my 10 week CT scan on Monday the 21st so please think good thoughts. I will find out the results during the week and will be sure to keep everyone posted.

I Love this Article

My Brain on Chemo: Alive and Alert

Published: August 31, 2009, New York Times

Within the chemotherapy alumni corps there exists a mutual respect not unlike the bond shared by veterans of war. Sometimes that respect is silently conveyed; not everyone wants to talk about it. And sometimes it is shared in the shorthand of the battle-hardened.

Where?

Esophagus.

Who?

Sloan-Kettering.

What kind?

Cisplatin, fluorouracil, Drano,

Borax … .

Side effects?

The usual: nausea, vomiting, hair loss. And the toes are still numb.

Yeah.

At this point the two chemo alums may begin to sense a phantom metallic taste at the back of their throat, a taste sometimes prompted by the intravenous infusion of the corrosive chemicals intended to save their lives. A strong drink might be in order; maybe two.

With that first, taste-altering sip, the two might begin to discuss another side effect that has received attention lately, the one rudely called “chemo brain”: the cognitive fogginess that some patients experience after completing their regimen. That fogginess does not always completely lift, and oncologists are now taking seriously what they might once have dismissed as a complaint rooted in advanced age or cancer fatigue.

For me, reading about chemo brain has resurrected that faint taste of metal. I underwent chemotherapy in 1999 and again in 2004, thanks to a profoundly unwelcome recurrence. Depending on one’s perspective, I was both unfortunate and fortunate. Unfortunate in that I endured all the concomitant fears and indignities, twice. Fortunate in that I had the option of chemotherapy, twice. Not all cancers respond; not everyone is so lucky.

I experienced all the typical side effects. Nausea: for several days at a time, though vomiting sometimes broke the monotony. Hair loss: I was balding anyway, so chemo saved me from comb-over delusions. Neuropathy: even now, my toes feel as if they were wrapped in cotton.

And, I now think, chemo brain — but a form that seems to be the common definition’s opposite. My self-diagnosis is that I had a pre-existing case of fogginess that lifted during and immediately after my chemotherapy regimen: I suddenly experienced acute clarity. Then, as the effects and memory of chemotherapy faded, my confusion returned. Twice.

In 1999, before the diagnosis of cancer and the prognosis of let’s hope for the best, I was enveloped in the haze of the everyday. Rather than rejoicing in a loving wife, a daughter not yet 2, a job I enjoyed — in being, simply, 41 — I created felonies out of matters not worth a summons. Traffic jams. Work conflicts. No Vienna Fingers in the cupboard. Felonies all.

Cancer, as is often said, tends to focus the mind. But my diagnosis hovered in the theoretical until the moment I began the first of six rounds of chemotherapy, each one requiring a five-day hospital stay. The nurse hung bags of clear, innocent-looking liquid from an IV pole, found a plump vein along my right arm — and the fog slowly lifted.

Sickened by the mere smell of food, I suddenly saw the wonder in the most common foods: an egg, a hard-boiled egg. Imprisoned and essentially chained to an IV pole, I would stare out my hospital room window at the people below, and feel a rush of the purest envy for their routine pursuits. Imagining the summer night air blowing cool through sweat-dampened shirts, I’d think how good a $3 ice cream would taste right about now, or a $5 beer, and how nice it would be to watch a baseball game of no consequence.

Men acting like boys, hitting, throwing, running on grass. I used to play baseball.

In the morning, after urinating away the remnants of poisons pumped into me, I would roll my IV-pole partner back to the window and study again the people below, moving, hustling, ambling, to jobs, to appointments, to a diner, maybe, for one of the fried-egg sandwiches served countless times every morning in Manhattan.

Gradually, from midsummer to late fall, the chemotherapy transformed me into a bald guy whose pallor was offset only by the hint of terror in his eyes. But the chemo also wiped away the muddle, revealing the world in all its mundane glory. I won’t tell you that I wept at the sight of a puppy. But I did linger over my sleeping daughter to watch her tiny chest rise and fall. I did savor the complexities of a simple olive. I did notice fireflies, those dancing night sparks I had long ago stopped seeing.

After the chemotherapy, radiation and a few weeks to allow things to settle down, as my doctor put it, I was declared “clean” in February 2000. Never again, I vowed, would I take these simple things for granted. I was blind, but now I see.

The fog, of course, returned as the effects and memory of chemo faded, no matter that my wife and I were now blessed with two daughters. How I hated traffic jams. And the Vienna Fingers! Who ate the last Vienna Finger?

Then, in the late spring of 2004, probably while I was railing about something eminently unimportant, my cancer impolitely returned. Once again I felt the frigid breath of mortality at my neck. I also felt like a fool. What is the use of surviving cancer if you don’t learn from it? Are improved by it? Am I so thick that I need to receive the life-is-precious message twice?

I returned to Sloan-Kettering for more chemotherapy and more of the same side effects — including my own manifestation of chemo brain. Fog lifted, world revealed.

After the chemotherapy came major surgery, which provided the exclamation point to whatever chemo was trying to tell me. Once again I was declared clean. And this time, by God! This time!

I became a walking platitude, telling friends without a trace of irony to live every day as though it were their last. Because, man, I’ve been there. And if I weren’t so repressed I’d give you a hug.

Slowly, insidiously, the fog of the everyday has returned to enshroud me. It came in wispy strips, a little more, then a little more, wrapping me like a mummy. Just the other day, in the car with my wife and my two daughters, I began railing about being stuck in a traffic jam.

Perspective, my wife said. Perspective.

I could not hear her. You see, I’m struggling with this pre-existing human condition.

Dan Barry writes the “This Land” column in The New York Times.

I Know You Mean Well But…

As many of you know, I have been toying around with the idea of writing a humorous, small book that shares all of the annoying, insensitive or inappropriate things that people have said to me over the past 5 years. The title of the book would be I Know You Mean Well But…because I genuinely believe that people have good intentions. They often get flustered and rather just say something sweet and pure like “I love you and I think it stinks you have to deal with this,” they try to fill the airtime with silly things.

Many of my friends have joked with me over the past few years saying that they are now even more cautious about what they say around me because they don’t want to be in the book. I tell people that although no names will be mentioned, it’s my hope that people “see” themselves in the stories of the book and learn how to be even more supportive and constructive to family members and friends who are dealing with cancer. It’s not a bad thing to realize that you may have said some of the things I mention in the book. In fact, before I went through this, I said a lot of the things that I realize now aren’t that helpful!

I also realize that every patient’s experience is a very personal one. Another patient may, in fact, appreciate something that might offend me.

I always tell people that the best thing to do is to just listen and “go with the flow”. Rather than bring an agenda to a conversation with a patient, just go in very open-minded and comfortable with letting the discussion flow in whatever way the patient is feeling. There are indeed some days that I want to do a lot more talking than others. My moods change and I can’t provide any “sure fire” approach that will always work.

So, in the spirit of full disclosure, I will share with you something that really annoys me.MANY people have committed this foul so if you see yourself in this story, believe me, you are not alone.

I really don’t like when people inquire about the status of my hair growth.

It’s understandable why people ask…I haven’t been on chemo for 4 months now and naturally my hair is starting to grow back. Also, now when I go to the gym or wear a bandana, one can see that my hair is starting to grow back.

People often make the following type of comments:

· Stating the Obvious – “Jen, your hair is growing back”

· Inquiring/Being Nosy – “What’s going on with your hair?”

· Pressuring Me into not Wearing Wigs Anymore – “You should stop wearing your wig anymore, it looks fine”

My issue with these comments is that it’s really no one’s business what I do with my hair and I will take off my wigs when I am good and ready. In general, I hate comments that don’t really have a purpose. I don’t understand the intention of a comment like “Your hair is growing back”. Are you trying to say something deeper or you are content just making an observation that serves no purpose?

I think it makes other people feel better to see that my hair is growing back. To them, it’s a sign that maybe I am no longer sick.The reality though is that my hair growth is merely a physical representation of the fact that I haven’t had chemo in a few months.In no way does it mean that my odds of the cancer coming back have changed nor that I am in the clear health-wise.

It’s also tough for me, as my hair takes longer to grow back each time I have treatments. In the past, I have taken off my wigs just to have the cancer return a few months later. Then, suddenly, everyone is commenting on my hair because it went from a short cut to a long cut (the wigs). Basically, I just don’t want to deal with it right now.

If my hair growth meant that the odds were in my favor or that the doctors thought the cancer was really behind me, then I would understand why people want to talk about it.

If my hair growth was something that I expressed was important for me to talk about, then I would understand why people want to talk about it.

The truth is, I just don’t want to talk about it. Thanks for understanding. If you want to be supportive just tell me that you love me and you hope and pray that there is no more cancer in my future.

Finding the Perfect Balance

The past few weeks have been jam-packed. I spent a week in California combining business with pleasure. I spent a few days visiting colleagues in Los Angeles and then flew to San Francisco for the weekend to catch up with lots of friends. It was so great to see my friends and meet so many of their children for the first time!

 

This trip marked my first real business travel trip since I recovered from my surgery and it felt great. Although I do notice that traveling takes a lot out of me. When I returned home on t

he following Monday, I slept over 10.5 hours to recover from the jet lag!

I am doing really well. However, I am finding that the hardest part of recovering is finding the perfect balance between “moving forward” and “remembering the past.”One the one hand, I want to move beyond the cancer and jump into new activities both feet forward.On the other hand, I find that I get overwhelmed when I have too much on my plate at one time.

I find that the easiest thing to give up is taking care of oneself and I refuse to do that this time. It is so important for me to eat well and sleep well and manage my stress. It is often hard to do this when you are working a full-time job, gearing up for the 4th year of Cycle for Survival and trying to see friends and relax a bit.

It’s not my intention to complain as I know that everyone has to juggle all of the activities in their life.I just find that it has been harder for me lately to “do it all.” In order to get everything done that I want to, I need to live a very rigid lifestyle which I don’t like to do. However, I don’t want to use the cancer card and remind people that I need to prioritize and minimize my commitments. However, I find that sometimes I want to throw my hands up and say “I need to take it slow”.

It’s odd to me that I don’t have a lot of anxiety around the cancer returning but I do experience anxiety over much smaller matters (e.g. will I get all that I need to done at work?Will I be able to get all of my errands done thisSaturday?)I wonder if it is natural for patients to displace their anxiety in this way. I guess I have more control over getting my work done or completing errands than the disease so it would make sense.

I guess the bright side is that I have a very full life and have so much that I want to accomplish and get done.Since I don’t want to give anything up, I will continue to struggle with how to balance all that I do.

The irony is that when I was dealing with chemotherapy or surgery, I had no problem finding that balance. There was a clear “top priority” and nothing else seemed to matter. Now, all of the small stuff (which is fun and delightful), tends to cloud my vision. And if this is all what I have to complain about, I am truly lucky in life. Thank goodness that I have gotten to the point that I can afford to sweat the small stuff again!

An Oasis in Ocean Grove, New Jersey

I just got back from an amazing experience. There is an oceanfront bed & breakfast in Ocean Grove, New Jersey (about 75 minutes from NYC) called Mary’s Place by the Sea. Although the home is named after the Virgin Mary, this home is open to all religious denominations and does not include religion in any of their activities.


The mission of the home is to give women with cancer a place to rest and revive during and after treatment. The staff caters to the needs of every woman as they work through the physical and emotional rigors of their treatment and their individual cancer experiences. Guests may stay a few hours or a few days, if needed. In addition to great food provided by a nutritionist, they provide Reiki massage, guided meditation, yoga and spa services (I got a facial!)
 
Their goal is to provide a home of hope that allows the individual to get well and gain strength to win their battle with cancer. Right now they are “renting space” from an existing B&B.; They have just recently bought an oceanfront plot of land and their goal is to have a 30 room facility (for women and their kids) built within 2 years.
 
The co-founders of this organization (Michelle Gannon and Maria McKeon) are magical. I arrived on Thursday night around 8PM from the city. I was run down from a long week at work and couldn’t wait to relax. They greeted me with open arms and herbal green tea. I had a delightful night’s sleep and woke up in the morning to the sounds of the ocean. It was a gorgeous day so I took a long run along the beach. I then had a delicious meal made by a nutritionist who asked all about my dietary needs. I spent a few hours lounging on the beach and then received a facial and a reiki massage (I was told during the reiki massage that she could feel a lot of energy in my heart which I guess is a good sign!)
 
I went back to the city around 6PM with a home cooked meal to take with me on the train. In less than 24 hours I was a completely different person. Calm, relaxed and rejuvenated. Although I am done with treatment, it still did wonders for my energy. I can only imagine what good it does for women who are actively battling the disease.
 
I left Mary’s Place by the Sea with two promises:
  • A promise to send them a list of ideas as to how they could build awareness and raise money (I sent that list this past Wednesday).
  • A promise to tell anyone and everyone I knew about this wonderful facility and encourage you to pass the word along. The need volunteers and they need funding.
You can find out more by visiting marysplacebythesea.org. I love what these women are doing and truly believe it offers a true gift. Your mental state is such an important part of managing your cancer well. I have no doubt Michelle and Maria are saving the lives of so many women and are making the final days for those who can’t win their battle with cancer more peaceful.
 
Thank you ladies for doing what you do!
 
 

Jen’s “Sexy Back” Weekend

I just got back from a great weekend at the NJ shore with my girlfriends. For a while now, my friends and I have been discussing a bit of a celebration when I am done with chemo and surgery. We joked around that it is my “sexy back” weekend since now that I am off the juice, I can get back to my fighting form.

We know that it isn’t the real CELEBRATION since my odds are still 50/50 of the cancer coming back over the next few years. However, if the past 4.5 years have taught us anything, it’s that we need to celebrate the daily milestones as opposed to waiting for the big moment.

My friend from high school generously offered his beach house in Long Beach Island for the weekend so off we went. The weather was perfect, the house was gorgeous and the company was divine. I couldn’t have asked for a more wonderful time.

I wouldn’t have made it through the past few years without my friends and I am thrilled that some of them were able to take time out of their busy schedules and celebrate with me.