Admittedly late to the Zach Sobiech story, yet humbled just the same

I’m admittedly late to the Zach Sobiech story, yet humbled just the same by the teenage boy who spread music and happiness despite his terminal diagnosis of osteosarcoma, a bone cancer that took his life on May 20.

While Zach’s hit song “Clouds” attracted people to his story, and eventually lured BMI to sign him to their label, another song of his hit home for me. “Fix Me Up,” sung by Zach and his bandmate Sammy Brown, expresses his devastation at having to leave, and her despair at being left behind. “One more moment please,” her haunting refrain, broke my heart.

What would any of us give for one more moment? 

And yet, in dreams, when I reunite with my mom, they’re not filled with hugs, or amazement at seeing one another again, or catch-ups of our lives. Even asleep, I’m too busy trying to maintain a semblance of normalcy, as to not let on to her that she’s dead/dying. The same way she was too out of it, and we were too scared of upsetting her, to tell her she was dying back then. 

Zach was a teenager dying, the same way I was a teenager when my mom was dying. Yet he and his family embraced saying goodbye, saying I love you, admitting it was the end.

Our goodbye was slightly more subtle. I crawled into Mom’s hospital bed and lay beside her, resting my cheek on her chest. I tried to hide my tears. 

“You’re a good kid, Miss,” she said.

“You’re a good mom, Mom,” I said. 

Sending much love to Zach’s family and friends in their time of grief and healing. You’re a good family, Sobiechs. 

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.

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