Thursday, November 21, 2013

Walking and Remembering. Charlotte, NC, November 2013

The walk. The AIM at Melanoma walk in Charlotte, NC on Saturday, November 16, 2013. One of those life experiences that brand us and mold us into who we are. At least that is true for me.  I’ve spent the last few days processing the weekend.

The journey began Friday at 5:30 am. I drove across state to pick up my friend Becky, and from there we drove to Cleveland to grab Sheryl. The three of us barreling south, eating peanut M&M’s while listening to Blake Shelton. Conversation among three women, the comfortable silence, the introspection that happens when you’re driving for hours and hours. These women didn’t know Jillian well. They know me, and they knew how important this walk was going to be for me. They wanted to be there. For me. I love these women.

                                                           Becky, Me, and Sheryl

The phone call from Reverend Carol at 7:30 that evening,  “ Where are you”? Only 15 minutes away! Fifteen minutes away from the hugs I’ve been waiting for. Fifteen minutes from meeting the most incredible people I’ve been in contact with the last two years. The people that have helped me navigate through the belly of melanoma, and the ones that are still helping me today.

Bossy and Crabby

        Sandy Klein and her husband     

   Tara Gill, Mark Williams, Rev Carol Taylor
     Cindy Meadors Rutledge, Sandy Klein, Me,

Men in Black 

                                                            Rev Carol and Tara Gill

I think about the crazy busyness of our lives. I'm observing people as they go about their daily responsibilities. Focused. Organized. Get it done. Rush, to the finish. I used to be that person. Too focused on myself to really realize what was going on around me. If I heard that someone was walking for a cause, or organizing an event, my thoughts would be more in  line with, “That’s nice, but I’m too busy to get involved with that right now”. Or….”I’m glad I don’t have to do all that work”. Or….just nothing at all. I had no idea what was behind their particular cause. I didn’t realize the passion, the conviction or even the pain associated with the decision to get involved. Was I too busy to care? Sounds like I was. 

                                                         The Family of Katy Ault Phillips

The melanoma warriors I met this past weekend traveled from all over the United States to meet and to walk for their passion. Colorado, Oregon, Illinois, Texas, Oklahoma, South Carolina, Georgia, Ohio, Wisconsin, Michigan. Was it easy to be there? No. Would we change it? Never. There is unity here and a connection wound so tightly,  nothing can unravel it. I am absolutely humbled to be a part of this movement, and a part of this melanoma community. Jillian’s death has taught me to dig deep. To reach in as far as I can to try to connect until I get it. Sometimes it hurts. That’s not true. Most time it hurts, but the rewards are tenfold. 

                                                       Standing/Walking United

Thanksgiving is right around the corner. I’ve got much to be thankful for. Even for the pain of growth and understanding.


And Martha, this is for you. Because you asked. My Speech:

Good morning everyone. It truly is an honor for me to be here with you today. 

I’m Susan Hayes, and I’m Jillian’s mom. I was planning to attend this walk last year in honor and in support of Jillian as she battled stage IV melanoma. I was unable to make it, because Jillian had taken a turn for the worse.  I needed to be home with her.
This year, I’ll be walking in Memory of Jillian. Jillian died on December 29, at the age of 23. I’m not happy about that.

When Anne invited me to speak today, I asked her what she wanted me to talk about.  Her response was, ”Just share Jillian’s story. Talk about her motto, Fall Seven Times, Stand up Eight”. Well, that’s’ easy.

Jillian was 19 when she was first diagnosed with melanoma . She had a mole on her back that had begun to bleed. After the mole was removed , we waited for the pathology results. We were not prepared when we heard the words, It’s Melanoma. Cancer. Stage 2. How can someone this young have melanoma? I barely knew what melanoma was. Well, I know now….., and what I do know, I wish I had known years ago so I could have protected my daughter.  

Before her diagnosis, Jillian had been an avid tanning bed user since she was 16. She even worked at a tanning salon and had unlimited tanning time. I didn’t know how deadly tanning beds were. For the next year Jillian had routine checkups every three months. On the year anniversary of her initial diagnosis, Jillian’s doctor ordered a PET scan. There were no symptoms of melanoma, nothing. He just wanted to make sure that things were okay.

We learned then what a sneaky beast melanoma can be.

Just one day before Jillian turned 21, we were told her cancer had spread to her liver, lungs and brain, bringing her to Stage IV melanoma. This began the battle of a lifetime. Not only for Jillian, but for her family and friends.

For the next two years, Jillian endured several surgeries, three stereo- tactic radio surgery’s on her brain tumors, whole brain radiation, a clinical trial, chemotherapy, and the recently approved drugs Zelboraf and Yervoy. Nothing could stop the progression of this disease for her.

But through all of it, Jillian was unbroken. She displayed courage, grace and determination. She had an iron will to live. Her positive attitude never wavered.  Jillian fought against melanoma with everything she had, falling several times, but always standing back up. Always.  I am so proud to have been her mother.

Even though Jillian isn’t here in the flesh today to continue her battle against melanoma, her spirit is alive and well. Through the efforts of AIM at Melanoma, and those who are affected by this horrific disease, we can all stand together in our fight against melanoma.

I know Jillian’s is standing tall right beside us today, and she will be there to celebrate when we do find that cure.

Fall Seven Times, Stand up Eight.

Thank you, Jillian. We will.

Monday, November 4, 2013

Guilty As Charged...

Fall Seven Times, Stand Up Eight.

Jillian’s motto. The word’s I try to honor and live by. The words I use to inspire. But at 4:00 am, those words mean nothing. I’m alone with my thoughts with only my pup allowed to see my mask unveiled. Is it really a mask, or just who I am today? I think it’s both.

Halloween has always been a favorite “holiday” of mine. For years I’ve decorated my house inside and out. Looks like Vegas. The more decorations the better. Tacky? Yeah. Do I care? Nope.

Last year my house was dark. There was no one home to answer the door as I was in Gobels taking care of Jillian.  I drove straight from her place to help Josh and Kaytie as they took their kids trick or treating in their new neighborhood. I didn’t get home until all the goblins had gone to bed.

This year I was home, but I didn’t decorate. Instead, I passed out candy in between packing up Jillian’s room.  I knew it wasn’t going to be easy, in fact I’ve been avoiding it. As I’m packing away all of Jillian’s soccer trophy’s and medals,  it felt as if she was in the room with me. We were sharing stories, singing our hearts out to the Backstreet  Boys as we barreled  down the highway toward some soccer tournament in some state. We were just hanging out. Doing what we’ve always done.

But in the quiet dark of the early morning hours, the reality hits yet again. Jillian is not here. I just packed up her room. And what I felt this morning was guilt. Yes, we can add guilt to my crazy collection of emotions. 

Guilt that I was unable to protect her from melanoma. Guilt that I didn’t know the dangers lurking underneath the glass of those tanning beds. Guilt that I thought her freckles were “cute”. Guilt that the only worry I had from her frequent sunburns was whether she was in pain.

No one needs to fix it for me by telling me I’m not guilty and shouldn’t feel that way.  I’m not going to debate my feelings. I am guilty.

The awareness I’ve tried to share about melanoma has many faces, too. I want to educate. I want to expose the freaking beast. I want to prevent another family from having to pick up the pieces of a shattered life. I want to honor Jillian. But by digging deep, I’ve discovered another reason.  I want to make it up to Jillian by helping to save lives through these efforts. I didn’t save her life. I hope I can help save yours.

“Laying out and tanning beds pretty much screwed me”.
~ Jillian Hayes

I’m still standing, by the way. A little wobbly from time to time, and  plenty of scabs on my knees, but I’m up. It’s 7:00 am now, and the sun will be rising soon. It always does.