Dad and I did the pancreatic cancer walk!

Bright and early Sunday morning, my dad and I did the Lustgarten Foundation Pancreatic Cancer Research Walk -- our first time walking it together!

Dad did the walk in 2001, but under very different circumstances. It was the inaugural year of the walk, and he was alongside my mom, Sally, who had been diagnosed with pancreatic cancer the year before. Sadly, it was their first and last walk. After battling the disease for two-and-a-half years, she passed away the following year.

Nearly a decade later, I finally got up the courage to do the walk. It was 2011, the year leading up to my wedding, and the walk was a way to honor my mom and grieve her absence leading up to my big day. My groom Mark and maid-of-honor Laura walked alongside me, readying me to walk down the aisle. It was a moving and memorable day.

So when Dad asked if I wanted to walk it together this year, I was eager to do it again. Even though the loss of my mom was so devastating, she has smiled upon us over the past few years. My dad is happily remarried to my wonderful stepmom, Susan. Mark and I just celebrated our two-year anniversary. And to top it off, this year I finally completed the memoir that Mom and I started writing together when she was sick. I knew Dad and I were in a good place to experience the event together. 

The morning started with Erasure. On the drive to Jones Beach, Dad blasted our favorite hits ("A Little Respect," "Blue Savannah"), the same way he used to when picking me up from playdates. We sang along, remembering all the lyrics, and I felt just like a kid again. 

Our singing only stopped once we pulled into our parking spot and realized that the car in front of us had a Connecticut license plate -- Sally's home state. We had just been relaying recent dreams we had of Sally (Dad's the night before, mine a couple weeks ago), and this felt like yet another welcome visit from her.

Arriving at the event, we checked in, donned our t-shirts, and filled out our bibs that we were walking in honor of Sally. At Dad's nudging, we even made a team poster and took a team photo for Sally's Circle -- despite only being a small team of two!

Photo courtesy of Ben Asen

As the race kicked off at 9:30am, Dad and I held hands as we crossed the start line, and didn't let go for several minutes. We were moved and thinking of Sally, and yet cheerful. For this I give credit to the wonderful event organizers. Despite there being so few pancreatic cancer survivors (most patients pass away within months), the Lustgarten Foundation strives and succeeds at throwing an upbeat and positive event that brims with hope -- hope for the surviving family members, hope for scientific advances like screenings, and most of all hope for a cure. 

Sunshine beaming down on us, a cloudless blue sky ahead of us, and the ocean only a glimpse away, Dad and I walked on, pausing to take a photo and visit with our photographer friend Ben Asen, who has been shooting the event for twelve years in honor of his father who passed of pancreatic cancer. It made the event even more special to see a smiling, familiar face. And, of course, he and Dad traded stories of their favorite and most famous rock concert experiences (Crosby, Stills, Nash & Young and The Who). 

Photo courtesy of Ben Asen

Soon it became like any other walk Dad and I have taken--and many were taken along the beach after Mom died. We chatted about everything and nothing: checking in on all the family members, pointing out repairs done since Hurricane Sandy, commenting on the gorgeous weather after yesterday's rain. We paused midway to enjoy the beach view before completing the three-mile trek.

Making our way back, we again held hands as we crossed the finish line, and hugged once we actually crossed. We learned that 8,000 people had walked with us and more than $1 million had been raised ($1,500 of which was donated by our amazing family and friends!). We felt so honored to be part of this wonderful event.

"I can see why people do this once and then continue to come every year," Dad said. I agreed.

So although it took us twelve years after Mom's death to do the walk together, we now plan to make it an annual thing--with guests! My stepmom Susan and my brother Jordan have already volunteered, and I bet we can recruit Mark and Laura. Who else is in? Team Sally's Circle 2015!

Patrick Swayze Dies of Pancreatic Cancer

Hi friends,

I'm so sad to report that Patrick Swayze died today of pancreatic cancer.

I just found out the news, too. When I logged on to Facebook, the first thing I noticed was a friend's wall post: poor Swayz. Out loud I said, "Oh no." A few other Facebook comments confirmed. Another "Oh no" from me. And then a google of "Patrick Swayze" triple-confirmed. I kept wishing the news was wrong.

It's so strange. Pancreatic cancer has such a hard-hit reality, as close to a death sentence as any cancer. Yet when it strikes someone you love or admire, someone who has so much passion and feist, it's so easy to believe they can beat it. So naive to think they could be the 1 in a million who survive. Sometimes I think if I just accepted the reality, it would hurt less. But I also believe it's our faith in our loved ones that gives them the ability to beat the odds. Sally and Patrick both lived way longer than most pancreatic cancer patients, who often pass within 6 months. I think that says a lot about their gusto. (See a clip of Patrick Swayze in his Barbara Walters exclusive interview in January.)

Poor Patrick. And his poor wife. I'm keeping them in my heart tonight.

Love,
Marisa

P.S. Sally, if you're out there reading, this could be your big chance to go Dirty Dancing with Patrick. Keep your eyes peeled for him. Laura will be very jealous!

This just in: Kim Jong Il has pancreatic cancer

According to CNN.com, South Korean leader Kim Jong Il has pancreatic cancer. He's 67.

It feels like so many celebs and public figures are coming down with pancreatic cancer: Patrick Swayze. Steve Jobs. Ruth Ginsberg. And now Kim Jong Il. Do you think pancreatic cancer is more prevalent, or do you think there's just more awareness around it?

From a special guest blogger: "Father's Day Without Dad"

Hi! In honor of Father's Day, I invited Cathy Bueti to guest blog. She carries the true spirit of Sally's Circle: she's a breast cancer survivor and recently lost her father to cancer, but her memoir, "Breastless in the City" (LOVE the title!), is all about how she found love, happiness, and hope throughout it all. Take it away, Cathy, and thanks for sharing such honest thoughts.


I have been avoiding the card aisle for weeks now. I don’t want to see commercials or fliers advertising Father’s Day sales. I think about how none of that matters. I still have moments when it doesn’t register in my head, or rather my heart, that I don’t have a dad anymore. This is my second Father’s Day without him. He passed away from pancreatic cancer on June 2, 2008. He suffered with it for a year. During that time I hardly saw him. We spoke on the phone and emailed. That was what our relationship had become over the years. Very distant and difficult.

I realized at the end that he did the best he could. Our relationship was strained to say the least. He was an abusive alcoholic when I was growing up. He was never a happy man even when he quit drinking. It was very difficult to get along with him. I learned to forgive although I wish it had happened sooner. The last time I saw him was on his 60th birthday only two months before he died. I hadn't seen him in a year since his diagnosis and subsequent surgery. I was grateful he invited me over to see him that day. That was something he never did. When I saw him things came out of his mouth that he never said before.

"Next time I will be a better dad." He said
"You did the best you could." I replied.
He said "No, I did what was best for me."

As the tears began to roll down my cheeks I thought about how I wished this conversation had come along years earlier. When he walked over to me I knew it would be goodbye. He put his arms around me and I cringed at how broken his thin body felt. I heard him whisper "I love my little girl." I cried as I thought about how this was something he never said and wished he didn't wait till it was too late. Although he didn't say it in his own way he showed me at the worst times of my life. He was with me when my husband died, he was with me when I was told I had cancer. Somehow when the chips were down in my life he pushed his way back in to be there for me. I didn't appreciate it at the time. The tough part though was how absent he was when I was experiencing the good things that life brought me.

I thought he could be OK even with a cancer diagnosis. I was OK, I survived. I wanted him to survive too. This loss is tough for me both as a daughter and as a cancer survivor. I feel guilty sometimes that I am still here.

Even though I think of him often on days such as this it always seems harder. So on this Father’s Day I will be thinking of him with the knowledge that his spirit lives on. Sometimes I feel him around me. Those moments bring me tears and at the same time also bring a smile.

Thinking back: How to deal with finding out your parent has cancer

I've been working on the first two chapters of my book, which focus on my mom's diagnosis. My mom, Sally, found out she had pancreatic cancer on January 13, 2000. Nine years have passed, but I still remember that day so well. I don't think my family will ever forget it.

If you (or someone you know) has recently been faced with the diagnosis of a loved one, here are some bits of advice that might help.

1- Listen up.
When you're receiving traumatic news, it's easy to zone out or get so panicked that you don't really listen. When my mom told us the news, I was so stunned that I barely remember what was said -- except, of course, for the scariest part: that she might have only 2 months to live. I was so obsessed with that 2-month deadline that I wasn't as hopeful or supportive as she needed me to be. Meanwhile, she ended up living for 2 1/2 years.

2. Question everything.
Being skeptical may sound like a form of denial (and, OK, it might be), but it's also part of being a smart patient. Even if the first doctor's diagnosis seems accurate, encourage your loved one to get a second opinion. Sally's first doctor gave her 2 months to live, but when she saw a pancreatic cancer specialist in NYC, he told her he had methods that kept patients alive for up to 10 years. That's a huge difference. Additionally, be skeptical of info or stats you find on the Internet. If you read something that worries you, ask mom or dad to consult the doctor about it.

3. Be there.
Whether you're scared out of your mind or numb to it all (or both, as I was), try your hardest to be available to the person who has been diagnosed. Amplify your own feelings times a million, and that's what the patient is feeling. In Sally's case, I felt closest to her and most proud of myself when I was able to really and truly be there for her -- even if it was only to bring her a cup of tea and a hug.

4. Open up.
Family members, relatives, and friends will want to be there for you. Let them. Talking about the situation may be hard, but feeling alone only makes it worse. Here's another plus: the connections you make during this time may last a lifetime. When I think about my closest circle of friends and family, they're all people who reached out to me and made sure I was OK. I'm forever lucky to have them.

5. Get help.
Therapy still has a negative connotation for lots of people. Guess what? It's not just the crazies who need someone to talk to. It's all of us. While my mom was sick and after she passed away, I saw several therapists and social workers who really helped me tremendously. It's easier to find one than you think. You can ask your general physician for a recommendation or call your insurance company and ask for providers in your area. Or, if you're uninsured or looking for other affordable therapy options, you can call local universities (they often provide lower rates) or Google around for therapists in your area who offer rates on a sliding scale.

Please pass this to anyone you think it might help. Especially if a friend is going through this, you might not know what to say to comfort him/her. I hope Sally's Circle can bring them comfort.

Did you see Patrick Swayze on Barbara Walters?

Hi there, midnight vultures.

Were you up late watching Patrick Swayze on the Barbara Walters special? I was.

Here's the background. A little over a year ago, actor Patrick Swayze was diagnosed with pancreatic cancer -- the same disease Sally had. As always with this awful disease, the outlook for the "Ghost" and "Dirty Dancing" star wasn't good. In fact, recent rumors said he had 5 weeks to live.

Well, if you saw him tonight, he sure doesn't look like a man on death row. Unlike most chemo patients, he has a full head of hair. (And yes, ladies, it's still those dreamy waves you remember.) But it's not just the hair that makes him seem healthy. It's him. Cancer has fired him up. He's full of anger at the disease, frustration with chemo, love for his wife, and passion for his acting career (he just filmed 13 episodes of a new TV show called "Beast" -- can you believe it?). Watch the YouTube video clip and you'll see his range of emotions. It's incredible to watch.

Saddest of all was the obvious, overflowing love between Swayze and his wife, Lisa. Married for 33 years, this couple fell in love at first sight and have been in love ever since. Videos from their youth show them dancing together, and they said recently they danced in their kitchen together. Barbara asked Lisa if she has pictured life without him. I thought of my poor dad watching the show alone at home. I wanted to hug him. He couldn't picture life without Sally either. But sometimes, as Lisa said on the show tonight, "life just happens."

A great quote came out of the show. Barbara showed the closing scene from "Ghost," where Swayze's character has to return to heaven. He looks at Demi Moore, tears streaming down her cheeks, and says, "It's amazing, Molly. The love inside, you take it with you." In my experiences, that's true on both ends. I know my mom took all our love for her with her to heaven. And I know we still have all her love here on Earth. That's the thing that doesn't die.

As for the rumors about Swayze's prognosis... who knows? Swayze says he's ready to keep fighting as long as his quality of life is worthwhile. "I'll have you back on the show in 5 years," Walters challenged him. "I'll be there," Patrick said assuredly, then calmly, "or I won't."

Do you think celebrities like Patrick Swayze and Barbara Walters can help lead more research and a cure for pancreatic cancer? What are other ways non-celebs like us can help?

From a special guest blogger: "I miss buying my mom Hanukkah presents!"

Hi, my name is Michelle Hersh, and Marisa has kindly offered to let me share a little bit of my story with you.

I am an almost 40 (shhhh!) year old living in the Midwest and Marisa is a 20-something living on the East Coast. What we have in common is that we both lost our fabulous moms to pancreatic cancer. It is rare even at my age to find other people in my general age category who share the pain of losing a parent and even rarer to find someone who has lost that parent to pancreatic cancer. We would rather have our moms here and never have heard about pancreatic cancer, but since that is not the case, we are making the most of it and are becoming fast friends!

My mom, like Sally, was the life of the party, my biggest cheerleader, and the center of our family. My mom Barbara died at 65, two years ago on November 27, 2006. Even amongst tragedy and death the calendar keeps moving on and so do others around you. When a death first occurs, you just want to scream to people in general "Don't you know my mom just died, how can you be carrying on with your life?" Well, carry on they do and in time you find yourself joining them.

Hanukkah was always a fun time at our house. As kids, my sister Marci and I would sneak around for weeks ahead of time trying to find my mom's hiding places. Seeing if we could cajole my dad into giving up a little hint as to what we could expect in our pile of presents. We would light the menorah and open a present (or two!) for eight nights. What I remember most was that my mom would be as excited for us on the eighth night as she was on the first. She delighted in gathering the perfect presents, festive wrapping and seeing us happy. It did not matter if we were 2 or 32 – her enthusiasm was the same.

As I got older, my gift giving to my mom turned from hand made cards and school projects to finding her equally coveted and thoughtful gifts. Apparently she thought the cards to be most important because as I went through her things after she died, she had kept every single card or letter she ever received from not only me, but my sister, my dad, her parents, her siblings and the list goes on. I don't think that she looked at them very often but she had them.

Now, I have them and I do look at them. Each time I do it is like a little present for me because I get to share a memory with my mom even though she is not here to laugh with me. On second thought, she is probably laughing at me, since that makes me more sentimental than I would have ever let on!

Since my mom died, we have tried to move forward with holidays to the best of our ability. It is very hard not having the one person who was most excited about everything here with us but we are settling into a new groove – another part of our "new normal".

We still buy piles of presents for each other, not necessarily extravagant, but a volume of things because that is what mom did. She liked to see the floor covered in presents and seeing that space bare would be too much bear.

Enjoy your holidays! Remember time spent with your loved ones, make new memories as you will cherish them in the future and I promise you that if I can get through it, so can you!

5 things you may not know about pancreatic cancer

November is Pancreatic Cancer Awareness Month, so I thought this would be a good time to fill you in on some stats.

1. It's the #4 cancer killer in the U.S. The overall survival rate is less than 5%. I first read this stat in a computer lab in college, when my mom was sick. Later, I bawled my eyes out.
   
2. The symptoms are super-sneaky. Back pain was my mom's only clue, and she tried months of physical therapy and even acupuncture before getting the right diagnosis.
   
3. It spreads fast. Because the symptoms lurk so quietly, early diagnosis is rare. By the time my mom was diagnosed, the cancer had already spread from her pancreas to her liver. This meant she was no longer eligible for the only surgery that could have saved her life. (It can only be performed if the cancer hasn't spread).
4. There's still hope. Amazing organizations like The Lustgarten Foundation and PanCAN raise money and awareness about pancreatic cancer specifically. Doctors amaze me, too. My mom saw one of the best and brightest in NYC. He always had new research, alternate therapies, and an optimistic vibe. Without him, I know my mom wouldn't have beaten her odds and lived for 2 1/2 years.
5. Even celebs get it. Opera singer Luciano Pavarotti passed away in 2007. Professor and The Last Lecture author Randy Pausch passed away this year. Actor Patrick Swayze is alive and fighting. Who cares if his pants were too tight in "Dirty Dancing"? Let's pray for him. (Right: Swayze bringing sexy back in 1989. Photo courtesy of Alan Light.)
   

*Note: The stats about pancreatic cancer are based on my mom's experience and research cited by The American Cancer Society, The Lustgarten Foundation, and other sources.

What is Sally's Circle?

Hi there!

It's almost midnight on Sunday, but I'm too excited to sleep. This is my first blog, and I'm so happy to share it with you.


My mom, Sally, is the inspiration for this blog. You would've loved Sally. How do I know? EVERYONE loved Sally! She had an enormous smile, the most loving heart, and all she ever wanted to do was sit and chat. In 2000, at age 57, she was diagnosed with pancreatic cancer. Most patients live less than 6 months (can you believe that?). My mom was so feisty that she fought for 2 1/2 years. Sadly, she passed away in 2002. I was 20.

Six years later, I'm still here. And, to my surprise, I'm actually pretty happy most of the time. I love my career in writing/editing. Playing drums with my indie-pop band, The Falsies, is a total thrill. And right now I'm obsessed with trying out new recipes in my straight-from-the-'50s slow cooker.

But some days are hard. Holidays get to me. Big decisions make me long for her advice. Family get-togethers feel one chair short. Even tonight, eating at a Thai restaurant with my dad and brother, I missed her chit chat. Dinners are quiet without a mom -- have you ever noticed that?

So... I bet you're wondering why it's called Sally's Circle. I'll tell you.

For my first 20 years, I was in Sally's Circle. Lucky me! I was the proud recipient of her tight-squeeze hugs, sympathetic back rubs, and loving hair strokes. Tonight, I invite you to sit at the circle. I hope by sharing my stories and coping strategies, you might feel the warmth of Sally's love. And I hope you'll share your stories with me, too.

Here's the first thing I want you to know: If it hurts now, someday it won't hurt as badly. I promise.

Thanks for the midnight rendezvous. I'm glad you're here.

Marisa

Photos courtesy of Irina Kipnis