Life Is A Blink

[As originally featured on Huffington Post]

We must savor our lives. Life is precious. We need to value our loved ones and tell them daily how we feel about them. Yes, my sister Ann is my guinea pig, but she says she doesn’t mind. She’s always shocked about the things that I discover about her recovery from leukemia, the lessons we all are learning from each other and how her siblings are dealing with the roller coaster ride we experienced for the past four years. We still go on high alert when Ann gets stung by a wasp (which just happened this week) because we remember when she had swollen up from a bee sting and had to go into the hospital again. Ann says she doesn’t remember these incidents, so we are the gate keepers who remind her to go to the doctor immediately. Or when she forgets to drink her water and she’s suddenly dehydrated and back in the hospital. I think my writing about her helps her reflect on her New Normal. What will her new life look like? Will she ever remember to carry her cane (ha ha)? Will she be able to write her music again? What is her motivation?

Ann usually spends the summer in NY, but she came to Los Angeles in August this year because her mentor, Judy, passed away and she wanted to pay her respects to the family. Judy was a musician, a teacher, a good friend, and a fighter. She had cancer at least four times, maybe five, but the last time was too much for her body. The thing that’s so interesting about Judy is that she recognized her time was nearly over but she never told anyone. I had lunch with Ann and Judy last spring and there was no talk of her life ending soon. The last we heard was that she was going into hospice and then she was gone. It was that fast. Way too sudden. We might have been able to process it better if we were prepared and had a chance to say goodbye and celebrate her when she was alive. But Judy didn’t want the attention. She put up such a good front. But I have to say, it throws the loved ones left on earth in a tail spin. We have to pick up the pieces and carry on. I know Ann was stunned - and so was I.

It makes you feel so fragile when you or a loved one comes that close to the brink of death. We don’t know if they will return or not. We must stay in a state of limbo, never being able to relax totally. That’s what happened to Ann with her Bone Marrow Transplant (BMT). She was taken to the brink of death and we were in shock. We found that someone had to take the lead with Ann. Our sister, Chee, did that. Ann calls Chee her hero. Chee discovered that you can’t depend on the patient to remember anything the doctors tell the patient. We had to go with Ann and write important data in a notebook. If there is an issue, Chee goes to the doctor with Ann when Ann’s in NY, and I go with her when she’s in Los Angeles. It’s difficult for the patient to grasp all the information that is shared in such a short amount of time. It takes at least two! You need to systematize what is being shared, hear it, assimilate the gravity of the situation, and understand that you may die. Finally, you need to listen to the doctor regarding the treatment that is recommended. Then take action - decide what needs to be done and then do it. The culmination of the appointment is the best possible outcome in that moment. As family members, you need to help the patient decide what’s best for them. Afterward, all you can do is love them and treat them normally. How you relate to your loved one and how you react and support them will help everyone involved feel satisfied, no matter what the outcome. We are so fortunate that Ann’s outcome is a positive one.

Sometimes we talk about why Ann is still alive and other patients didn’t make it. One of Ann’s doctors at Roswell Park Cancer Institute in NY told her that his best friend assured the doctor that he could take care of himself after the Bone Marrow Transplant. That’s the procedure for which you need 24/7 care for 90 days. The doctor agreed to let his friend monitor himself, but his friend died. That’s a harsh lesson to learn, and one that Ann’s doctor shared in helping Ann decide to go through with the BMT. You can’t do it all yourself. You need people surrounding you, caring and showing you that you are valued. So it seems the moral of this story is to cultivate friendships and value family. You need to put the big rocks in the jar first or you’ll never get them in. All the little rocks will take over and suddenly you realize that you’ve wasted your time with triviality. The important stuff doesn’t get done. It doesn’t get in the jar. What is important? Is it family, friends, jobs, vacations, school - that’s your job: to decide and start assembling in your jar. I choose family. I will drop everything for them because that’s all that matters. Family brings me joy.

As Maya Angelou said, “Be a rainbow in someone else’s cloud. Be a blessing to somebody. That’s what I think.”

Hometown Fever

[As originally featured on Huffington Post]

I’m back from my visit to my hometown, Buffalo, NY, and I had the best time! It started with a book talk in Batavia at the Richmond Memorial Library with Ann and Chee. We had a wonderful time together and it’s actually fun telling our story and answering questions. Of course, it’s so much better because Ann is continuing to improve and she’s a survivor in the best way possible. She is kicking the begeebees out of leukemia and I’m so proud of her. Chee scheduled an interview for us at WBTA radio station — Batavia After Breakfast with Hiram Kasten, and he was kind enough to promote us. Next stop was hanging out with Liz and Marc at the Ride for Roswell where $4.5 million was raised to fight cancer. Chee and I went to the kickoff and they were preparing for the trek up to Canada, down to Niagara Falls, and back to Buffalo. It’s an amazing fundraiser, and all for an excellent cause.

The next event was our book talk at Beauty View Farm. Paul joined us and it was even more fun. Yes, it sounds crazy that talking about leukemia and our story was fun, but our family bonded over this ordeal and we found the humor. Paul and I got to reminisce about our time in Los Angeles during our rock-band phase. Growing up, Paul used to have bands rehearse in the basement, and then he opened a shop near Lake Erie. Of course, I was the annoying little sister who would bug him and his friends. I sang, played guitar and wrote songs so naturally - I would open for the bands when there were concerts in the area. Some of the guys came to Los Angeles and we formed the band Che Blammo, and KROQ and KLOS played our songs- not bad. Our local friends from Cattaraugus were so supportive.

On Sunday, we relaxed and celebrated Joseph’s graduation from the University of Buffalo (Chee’s son) and his acceptance into Grad School! Celebrations are key to our family’s survival. We swam in the beautiful spring-fed pond and Mikey and Joseph had a blast on the paddleboard. Liz and Marc loved the paddle boat.

We also made bluebird houses to post on the trail at Beauty View Farm. Ann is writing a musical about the bluebirds because they are the NY state bird and they are an endangered species. We’re encouraging her to finish it. It’s in her head but the organizational skills needed to complete it are not kicking in yet. I would say it’s about three quarters done. Come on Ann, you can do it!

On my very last day there, AM Buffalo booked me on their morning show with Linda Pellegrino. She’s a cancer survivor, too, and also wrote a book, which will be out in August. Our plan is to do a book talk together and share our stories. We also shared the fact that their sisters helped Ann and Linda through the roughest time in their lives. Yes, sisters are amazing, and if you don’t have any, find some! Great girlfriends can be sisters, too. We jump in with both feet and don’t let you go through anything alone, even if you want to. Sisters are great for brothers, too, don’t forget. We whip them into shape and make them behave — yes? Do I hear a huge, resounding YES? We all have our strengths and that’s how you get through it, supporting each other’s strengths and trying to improve the weaknesses.

I miss my home town already. I’m looking forward to the next trip. I loved the fireworks at the Batavia Muck Dogs baseball game and at John Harvard’s in Ellicottville. I miss our yearly attendance of Shakespeare-In-The-Park. I miss the sound of the leaves in the trees as the summer breezes brush over us. I miss the cool pond that cleanses the soul. I developed my values and my strong sense of family there and no one can take that away from me, ever.

The following prayer touched my heart and helped me keep my feet on the ground when everything around me felt like it was crumbling. The prayer helped me stay strong for my sister, Ann, and for my sister Chee, who was there for Ann from the very beginning. Chee was the heart and soul of Ann’s recovery. As Ann says, Chee is her hero. This prayer has also helped me find my center, my focus, and my reason for being here. It may help you.

May I be at peace,
May my heart remain open,
May I know the beauty of my own true nature,
May I be healed,
May I be a source of healing in the world.

— Buddhist Prayer

Ann’s Beautiful Life

[As originally featured on Huffington Post]

My sister Ann is living a wonderful life now. She had a horrifying scare and took the whole family down the path of illness with her. Ann was diagnosed with ALL, Acute Lymphoblastic Leukemia, four and a half years ago. And in October, the five-year point, she will be declared cancer free! What an ordeal it has been. But at the same time, we’ve learned so much about each other as a family and we’ve become closer than ever.

How did we become closer? We celebrate everything! Every get-together is a celebration of life, and I ask everyone what they are grateful for and why. My 4-year-old grandson, Evan, and my three-year-old granddaughter, Juliet, even participate. Of course, they’re grateful for their parents and food on the table, but it’s good for them to say it out loud. It’s also good for their parents to hear that they are appreciated. So all in all, it’s good to communicate and share your thoughts no matter what age you are. It’s good practice to say what’s on your mind, so I ask: What are you grateful for? What makes you excited to wake up every day and put one foot in front of the other? My motto is, if you don’t know, make something up and pretend until you do know. Start saying things out loud and you will start believing it. Your life will start to change because everyone else will start believing you, too!

Photo: My sister Ann

Ann recently flew back to NY to celebrate the Kentucky Derby with friends and family. She helped to prepare the house and made some delicious dishes. Chee, our sister, made Mint Julips and they ate and laughed the day away. Evan’s birthday is Saturday and Ann flew back to Los Angeles to help him celebrate. We’re all going to go bowling for his party. Chee’s son James is going to celebrate his birthday with Evan. He’s a bit older (27) but we’re all kids at heart! Then my husband Gino’s birthday is next Saturday and we’ll all gather again! Our kids and their kids will be swimming, barbequing and creating lots of great music. That will be the theme of Gino’s celebration.

I’ll be joining everyone at the farm in June and I’m looking forward to partying, swimming in the huge one-acre pond, making pizza in the pizza oven, and hiking and shopping with Ann in Ellicottville, NY (our nearby ski village). Ann, Chee and I are going to do a presentation at the Richmond Memorial Library in Batavia, NY on June 22nd and of course another celebration afterward.

What do you do as a family to celebrate your loved ones? How do you let them know how much you appreciate them and love them? Can you even say the word “love”? Can you hug each other? One of the things Ann discovered and shared with us is that we didn’t grow up as “huggers” in our family, and after her ordeal with leukemia, she now has expressed that she wants to hug. I remember hugging our mom a few years before she died, and she stood there accepting my hug; but her hands were down by her sides. I told her “You can hug back you know,” but she never did. She just chuckled. Ann admitted she did the European double-air kiss to the cheeks for many years. But at a recent presentation at California State University Northridge, she announced to the students (after they asked her how she thinks she has changed) that she was now a hugger. They proceeded to stand in line to give her a hug and take a photo with her. It was so sweet, so awesome! It was truly a moment I will never forget.

I have always known, but I’m discovering it at a deeper level every day, that in the end it’s about family and the time you spend with each other. If you don’t have immediate family, cultivate deep friendships and treat those relationships with grace, honor and dignity. This African Proverb says it all: “If you want to go fast, go alone. If you want to go far, go together.” I prefer to go far with my friends and family around me so we can share in life’s greatness.