I’ve heard it called “a punch in the stomach”, but for me it was more like a top spinning in my head. How could my beautiful 31-year-old little sister Cathy, a single Mom with three little boys, have a cancer that had a 95% chance of killing her in 3-5 years!? Even writing this makes me remember it like it was yesterday, when in fact it was three in the afternoon on Friday, January 13, 1995.
The car ride home from University of Michigan Hospital in Ann Arbor, back to Ada, Ohio where my sister lived was filled with more questions than answers. What was this Adnoidcystic Carcinoma? It started in her tear duct; why? The doctors gave her only one option; remove her left eye and all the orbital tissue and bone possible including her forehead. How would she pay for it? She had just divorced and was going to school for a teaching degree, but had no insurance except for a small student policy. It was all truly overwhelming.
But life goes on and we had many facts to face in a short amount of time. We did it like we always did things in my family; with God and Humor –in that order! We composed a letter telling my sister’s story and passed it around. Our friends knew friends, and before we knew it her story was published in newspapers all over Northwest Ohio and Southeast Ohio, where I lived. She got calls for interviews and a fund was set up to help offset the medical costs.
My sister had her radical surgery February 13th 1995. Early on, Cathy chose to see the bright side of what was happening. She bragged that she had a 5% chance and how some people had none. She said “God tapped me on the shoulder to remind me of how precious life is.”
My sister wanted to do something special and make some memories with her three boys by going to Disney. Someone heard of this and anonymously donated the funds to go. We had a date picked and Cathy and I were to go with the three boys (Scotty 9, Brian 5 and Tony 3) and take her favorite babysitter along to help. When the travel agency had trouble getting rooms and flights that would work together, I called Disney. They not only found rooms, but started making all kinds of special reservations and arrangements. That’s when the Disney Magic began!
Everywhere we went Mickey picked up the tab. We were the Grand Marshals of the Disney-mania Parade! We received line cuts and never waited more than 5 or 10 minutes for any attraction. The boys received “meet and greets” with all of the characters and Disney even called Universal Studios and set up a free VIP day for us there. I can never put into words how magical that week was. She and I talked about the Disney Magic up until she died. I still wear Disney pins to remind myself about how a “wow” can truly make a difference in someone’s life! She once said to me “Sue, if it wasn’t for leaving my boys, I’d be OK with having this because of all of the incredibly nice people we’ve met, and the love that I feel from everyone.”
Cathy and her family as Grand Marshals in the Disney parade.
Hospice Angel Troops
In April of 1998 it was time to call in our Angel Troops, otherwise known as hospice. So many people say that they wish they had called hospice earlier. The truth is that the one dying gets to make that call, and should. Why would any 33-year-old young woman want to admit she was dying? It was so tough on all of us; watching her get weaker, thinner, lose her hair (that she so loved), and know that she would lose the boys. Calling hospice in her mind was surrendering, and she was one stubborn sister, I can tell you! But that was one of so many attributes I loved and admired about her.
When the call was made, it was right after Easter. On Good Friday, she had her last doctor’s appointment. Her oncologist was a young doctor with three little girls, the age of my sister’s own boys. I finally convinced the doctor to tell Cathy the truth. The doctor admitted to me how hard this had been on her, too. But she finally convinced Cathy that it was time, there was nothing more to do.
The call was made to hospice and things quickly changed for the best. A knock on the door brought a hospital bed, toilet help, and a wheelchair. Another knock and in came a charge nurse, a counselor for the boys, and even someone to help with shopping and household chores. I felt like a weight was lifted off my shoulders. Better pain management brought her spirits up; she was more talkative, like her old self, and could visit more with everyone for a couple of weeks.
Everyone came to visit her on Mother’s Day Weekend. She dressed in her favorite pajamas and sat up for most of the time. She felt good and we were all laughing and smiling about old stories or teasing each other about nothing special, just for fun. I took her out for a walk in her wheelchair and she was able to enjoy the fresh spring day while she held my hand like we used to when she was a little girl.
Hospice had such an immediate positive impact on my family. Tough discussions were gently and lovingly started. Funeral arrangements were made and as usual my sister had a say in exactly what and how she wanted things done. Arrangements were made that we’d have a pizza party after the funeral, so the boys would like the food. Hospice folks facilitated so many conversations and helped us cope with so many aspects of her last few weeks. It was good to know we were doing things Cathy’s way.
I will never forget the night before Cathy died. The nurse had shown me how to put premeasured morphine in her port. When Cathy noticed I was putting medicine in her line she smiled and said,”I know I must be dying if you’re giving me meds!” (I was not a nurse type at all) She asked me to help her to the bathroom and on our way back to her bed she said “Sue, give me the biggest hug you have.” I was happy to comply and as I held her weakened body in my arms she whispered in my ear that the Angels were close and to take good care of her boys. She gave me a huge smile and a kiss and she lay back down.
When I woke up early the next morning, and Cathy wasn’t responding to me, I called the hospice nurse. She came right over and told me to call everyone. She gently told me Cathy probably wouldn’t make it through the day. The phone chain started and everyone came as fast as they could. I was tired, but kept finding things to do to stay busy to not think about what was coming.
The boys and my Dad came in to say goodbye, but stayed outside on the front porch the rest of the time. I played her favorite CD as her breathing changed. The hospice nurse would give us updates until she said “Sue I think it will be in the next hour or so.” She was an amazing nurse that was quietly checking her, rubbing her legs, keeping her free of pain and just being there telling us what an honor it was for her to be there. I was honored along with my brother to hold each of Cathy’s frail hands as she passed, whispering our goodbyes and I love you.
My sister died at 11:45 am on May 14, 1998. Seventeen days before her 34th birthday.
After she passed, everyone got a chance to say goodbye. We covered her with the blanket the boys had made with words of love to her. Drawings, cards, her Disney ears and pins and everything else special were all around her when she passed, and so was hospice. As we were making calls and trying to figure out what to do next, our angel from hospice called the funeral home, took care of retrieving all of her meds, and removed everything that was now unneeded (and with three small children potentially dangerous) out of the house. She stayed until they took her out of the house and then stayed longer arranging the things that had helped so much to be removed to make room for relatives.
Hospice came back in my life when my Dad died three years later. His was very different and quick, but they still came and made his last days full of comfort and dignity. I have continued to support Hospice as the years have passed; making sure Hospice is here in the future for others. When things in your life are at their very worst, you get to see the very best of people in a Hospice Volunteer.
The National Hospice Board came to The Columbus Foundation where I work as an Event Coordinator. It was my honor to do everything I could to pay a little forward and take good care of them. The day of their reception was one of those perfect early summer days. I like to think my sister had something to do with that! Looking back, I had so many good teachers who guided me along the way of how to take care of guests. I truly love my career at The Columbus Foundation. My best two teachers were Disney and hospice. I hope by my actions, caring, and attitude that I make them proud everyday. My unsurpassed experience with both plays a daily role in my life –and always will.
Update from Sue on 9/29/10: Thank you for this wonderful honor and opportunity to share Cathy’s story. I was on vacation last week and made a trek to my favorite place in the world - Disney. I stood where my sister and I had been, remembering the magic, and for the first time, could smile instead of cry. If this story helps one person reach in their pocket and give to hospice, I will be forever grateful.