Name Your Price...

Melanoma Awareness Month. This is the month where our grassroots community bands together to make ourselves loud by sharing awareness to this horrific disease. There have been many memorable moments so far this month, just to name a few.

The AAD tried to change our color from Black to Orange. It enraged the melanoma community, but it also brought attention to melanoma and all we stand for.

We have had movement in getting bills passed in several states which would  ban minors under 18 from using tanning beds. Oregon just passed the bill into law, being the third state in the United States. Illinois and Texas are right on their heels, just waiting for their Governor’s to sign the bill into law. People have been working hard to make this happen.

There have been numerous awareness walks, honoring our warriors, and remembering those no longer here with us.

And then there are the Billboards all across Grand Rapids, Michigan showing Jillian’s smiling face, along with her beloved pup, ”Chancy Pants”.  

Indeed, these determined warriors have been busy this month. But at what cost?

I was having dinner with a friend last night when the waitress noticed my blue bracelet and asked me what it meant. It was one of the rubber bracelets with the inscription, “Jillian 9/24/89-12/29/12 Fall Seven Times, Stand Up Eight”. I looked up at her and said, “This is in memory of my daughter who died from Melanoma”.

She stuttered a little bit as she apologized for my loss. I felt the familiar lump rise in my throat as the stinging tears threaten to fall. Looking across the table, my friend said, “That must be very hard for you…what you do”. I didn’t understand what he meant. He explained, “ Your cause. Always the constant reminder”. I tried to explain without breaking down that this helps me with my grief. It helps me to keep Jillian’s name alive. It helps me to fight her enemy.

I’ve been thinking a lot about this exchange. It reminded me that I am not the only person working hard for a cause. There are real hurting people that stand, holding tight to their passion, whatever that may be. We applaud their efforts, congratulate them on any advances, without really realizing what it means for them. What does it mean to be constantly reminded their loved one has cancer, or some other illness? That their loved one is no longer with us?  What does it mean for the person holding a placard with the face of their loved one? There are times when I’m sure those people wonder, what am I doing here? I don’t want this. What is the cost for sharing their stories?

I sure don’t have those answers, but I want to be more aware that there is a price, and to acknowledge their selfless efforts.

So, thank you, my warrior friends for having the courage, the voice, and the determination to continue on this journey towards awareness, in spite of the pain.  

~Peace and Hugs~

Still Standing...

May. Skin Cancer Awareness month is upon us again. Last year I was busy getting donations for several Billboards in the Grand Rapids area in an effort to spread awareness to Melanoma. When the first Billboard was up and running, it was so exciting. Jillian’s own words were, “Chancy Pants is Famous”!

One year later so much has changed. We have five billboards up again this year. I have been receiving texts and emails from individuals who have passed them on the highway. I , myself, was driving home last night and there she was. All lit up, once again sharing her light and her story in the hopes that another young person, another family, doesn’t have to travel the same road our family is currently on.

I’m happy with these efforts, and the progress we’ve made this past year. I promised Jillian that I would continue to try and educate others about the dangers of tanning beds and the sun. And we really are making steps in that direction.

But…..

When I’m alone and I see all the posts and photos on face book showing her face, I am slapped with the reality that Jillian isn’t here. Each photo pierces my heart, and the wound begins leaking all over again. It has been 4 months since she took her last breath here on earth. Seems like yesterday. It isn’t easy being out there. Perhaps it would be easier if we weren’t sharing our story . We wouldn’t be dealing with the constant reminder that our beloved Jillian is not here with us today. As if we needed that reminder.

But we aren’t alone. There are hundreds of people who are currently engaged in their own battle with melanoma, in a battle for their life. There are just as many caregivers who are standing by their side. And those who have lost their loved one to this disease. They are all out there sharing their story, sharing their scars, all in the hopes that someone else will learn that melanoma is way more than a word. So much more than "just" skin cancer.

So we unite. As tough as it is, despite the hurt when the reality of melanoma slaps us square in the face, we are an army with a mission. We Stand.

Please Stand with us against melanoma by joining the event, Melanoma Black Monday, May 6.

Peace~

The Bell....

Last Friday evening I was honored to speak at the Grand Valley State University’s 2013 Relay for Life. I was asked to share my experience as a care giver to someone who has cancer. I’m not comfortable speaking in front of a crowd. I was the kid who was sick the day of “current events” in Mrs. Marlow’s sixth grade class. I was the one who threw up the night of our school play, “Alice in Wonderland”, where I was supposed to play “Mary”. I would have been sucked down that hole, I just know it. I never did find out how the play turned out. I never asked.

I had the week to think about how I was going to stutter and blow it in front of the crowd of people. Of how my mind would blank out and I’d forget where I was, and what I was doing on a stage. I thought about a lot of things this past week as I struggled to find my big girl pants.

Al long ago memory kept playing in my head all week. It was when I took the kids to a local sports store, where they featured a climbing wall. Josh must have been twelve, Jillian around nine. They both scaled it, Josh ringing the bell at the very top. What an accomplishment! Jillian didn’t make it to the top, but I was so proud of that little monkey for trying.

Then it was my turn. I got about half way up before I was ready to quit. My arms were tired, I was ready to be done with this. Until I heard this little voice below me, “Come on mom, you can do it. Keep going”. Immediately Josh joined in the encouragement, “Come on, mom”! 

Nope, I tried, I couldn’t do it, and I started to climb down. Jenni was very young, sitting below with her siblings and I wanted to get back to her. The little voice, Jillian’s voice, got louder. “Mom, remember you always told us NEVER to give up. You can’t give up. It’s what you said mom, never give up”.

I looked down below to where my kids were cheering me on. By then a crowd had gathered, all watching, big grins on their faces. I’m not sure if they were cheering me on too, or if they just found the humor in the predicament I’d found myself in.

I had a choice to make. Oooookay.  I began to climb toward that bell with all my might. My arms were straining, my heart was hammering, and my feet kept slipping, but I was determined now. Slowly, I made forward progress, little by little. I had to reach that bell.  And I did. I rang that stupid bell as cheers and applause greeted me from below. It was a great moment for me. I could have cared less whether I was physically able to climb that wall or not. It was the rare moment you get as a parent when you feel that one of the lesson’s you tried to teach your children really does show value. Simple. You don’t give up.

Change is inevitable in our lives. And some of those changes aren’t always welcome. Loved ones are diagnosed with cancer. Relationships are broken, new tumors are discovered, and loved ones are called Home. We can sit on the sidelines and  ask, “Why did this happen? Why me”?  Or we can slowly make progress forward, even if our feet slip, toward that big shiny bell, sparkling with promise.

Thank you my friends, for your continued support.

Thank you, my precious children. Those here on Earth, and the one in Heaven.

Peace~

Stand...

Saturday. Here you are again. You are not my friend.

It’s the day before Easter. A day of rejoicing, hope and promise. I’ll be honest, this past week I haven’t felt much like celebrating.  This Easter is the first of many firsts our family will experience with “the empty table”. Even though the last couple of years, Jillian spent this day with Steve’s family, I knew where she was. We still talked.

Another first: I was in a taxi cab a couple of weeks ago with my friend Sheryl. The cab driver wouldn’t shut up. He kept rambling, and once his conversation became political, I shut down. Then he asked me how many children I had.I answered him.
“Four. Three here on Earth, and one in Heaven”. Silence.

Sheryl and I exchanged glances, both secretly happy that those words stopped any further conversation in its tracks. Poor guy. Well, not really.

I know many  people are going through the same set of “firsts”.  I, (we) sometimes feel that we need to be upbeat and happy. Sort of like putting on that happy mask. The tears of a clown. I don’t particularly like pretending I’m feeling something I’m not.

As I was talking with my sidekick Mary last week, we discussed this very subject . Kristen, Mary’s daughter, left us 10 years ago at the age of 20. On Christmas Day.  We laughed hard together when I told her that I’m just overall crabby these days. Pretty blunt, I know, but I recognize this in myself. I’m embracing it as part of the grieving process. Mary and I also discussed some of the terms we don’t like when referencing our daughters that are no longer with us. This is her take:

“My daughter didn’t die- her earthly body gave out on her, but she hasn’t missed a beat- she lives on in Heaven, just not physically with me. She still lives”.

Mary and Kristen

Now here comes the next part.

I’m grieving. I’m sad, I’m mad, and I’m missing my daughter terribly, as is the rest of our family. I am not happy about it. In a way, you could say I lost the “joy”. Even though our family is moving on with positive things, something felt “off”.

We have recently started the Jillian HayesFoundation.
I was given the opportunity to share Jillian’s story and spread awareness on WOODV 8 Daybreak yesterday.( click on the video one you get into the website). These all all very good things, it's what we have been striving for.

 And yet. And yet……

Until this morning. A Saturday. Good grief.

I’m listening to Pandora, and the song from Rascal Flatts begins to play, “Stand”. Oh, how I love it when Jillian speaks to me through music.

"You feel like a candle in a hurricane

Just like a picture with a broken frame

Alone and helpless

Like you’ve lost your fight

But you’ll be alright, you’ll be alright”

Cause when push comes to shove

You taste what you’re made of

You might bend, till you break

Cause it’s all you can take

On your knees you look up

Decide you’ve had enough

You get mad you get strong

Wipe your hands shake it off

 Then you Stand, Then you Stand"

Jillian is right there in my heart. She talks to me. She nudges me, and rolls her eyes when I feel sorry for myself. She helps keep me on track. I have been reminded once again that I must live my life like Jillian did. Falling Seven Times, Standing Eight. Always.

So tomorrow I will go into Easter with Hope. With the promise of new beginnings, with renewed strength. Hanging on to the knowledge that Jesus Lives. And so does Jillian, and Kristen. And your loved ones that no longer share the Earth with us.

Thank you, my precious daughter. I needed you this morning.

Peace~

Are You My Mother?

I have always loved mornings. When my kids were little, I’d wake up an hour or so earlier than they did, just so I could have some quiet time to myself before all the busyness started for the day. And a cup or two of uninterrupted coffee. I still do that. Mornings are my time. Time when I can pray and try to sort through the chaotic, rambling thoughts spinning around my head. Maybe I need more than an hour.

I do not like Saturday mornings any more. Jillian died on a Saturday morning. Ten weeks ago today. I wake up now, on Saturdays, and I watch the clock. I relive every single minute of that last morning with her. Those moments are forever seared into my brain. Once 7:30 am passes, I breathe easier.

A dear friend of mine commented that I must have nightmares reliving what she endured. I try not to go to that place too often quite yet. Memories are sneaky though, they can appear unexpectedly. But even though some of those memories are unpleasant or painful, they are still precious treasures.  I have my own personal treasure box just jammed packed with gems waiting for me to open and examine. Some sparkle so brightly, I’m blinded by their light.  Others are scarred and caked with mud. I think with time, my handling them will polish them so they too, sparkle and shine. Just like Jillian did. My precious Jewel.

This week, as I’ve been trying to sift through my thoughts, I’ve been reminded lately of a favorite childhood book that Josh and I shared. “Are You My Mother?”. We would giggle together each time I read that book. We seem to share that same quirky sense of humor. Especially the Snort part. Another precious gem.

With my memories and my new life, I’m learning that I’m not the same person anymore. Cancer changes you forever. Whether you are the one with the disease, a family member or a friend, you just aren’t the same. How can you expect to be?  I had this conversation with Josh last week. His reply to my declaration was, “ We are always changing, mom. Life’s circumstances are constantly changing and we change with them. “ So, there you have it. I guess it isn’t so confusing after all is it?  Our lives change, we change with it. 

I’m not sure who I’ll end up being. I guess I don’t really need to know.  But I do know I’ll always have my faith, my children, my family,  and my wonderful supportive friends to share in the constantly evolving person I’ll become.

Who knows? Maybe I’ll end up being that Snort after all. And I’m okay with that.

Peace~

The Chain Link Fence...

To say this past weekend was an emotional one for me would be an understatement. My family and I had plans to drive the three hours to see Jillian’s billboard in person. On a Saturday. Exactly seven weeks after she left this Earth. The plan was to meet Steve’s family, along with our Melanoma photographer Melissa, and two other Melanoma warriors, Andrea and Jolaina. Melissa had offered to take photos of all of us under Jillian’s billboard.

As I was getting ready to go, I was overwhelmed with sadness. The kind of grief that knocks you to your knees, taking your breath away. I didn’t want to go. I couldn’t go. In a panic, I messaged Melissa.

“Melissa, I don’t know if I can do this!”

Her reply, “What do you want to do honey?”

Me: “Oh God. I have to. Shit. Ok. Deep breath. Its three hours on the road with two small kids. I'll be over my sadness by then. LOL!”

Melissa: "I got you!!!!!!!! I know this is hard. I know we can do this. We are going to do this!”

So, after putting on my Big Girl Pants, I headed out the door, picked up the kids and set off for our grand adventure. And I was right, you don’t stay sad for long when you are surrounded by giggles and the conversation that only occurs from an innocent eight year old. 

My resolve shattered however when I got the first glimpse of the billboard up ahead. Oh! It was HUGE!! We found a parking lot and tumbled from our cars, walking along the fence to get as close as we could. My throat knotted, tears streaming from my face, I looked up. There she was! She was as big as life. I could even see the freckles sprinkled across her nose. My Jillian.

And then it hit me. I am looking at my precious daughter on a billboard. Sweet. I don’t want to see you on a billboard honey! I want you here. With me. She felt so close, but so very far away. I talked to her then. I told her how much I missed her, how much I loved her and how proud I was of her. And how incredibly blessed I am to have known someone so special for 23 years. I told her I will fight for her until my dying day, and that she will never be forgotten. I think she smiled that crooked grin then.

 

I’ve had the weekend to mull all of this over. I’ve heard people say, “It will get easier with time”. “Time heals all wounds”. Or “At least she isn’t in pain anymore”. I just don’t know. Some days it feels like I’m making good progress, two steps forward. But then I get slammed back three. I am not the first person to lose a child, or a loved one. I wonder sometimes if some of us suffering with grief don’t get the latitude we need. Does society put expectation’s on us to buck up, get over it? Move forward. It’s been six months, it’s been a year, five, or ten. How do you put a time stamp on love? You can’t.

For me, I’ve come to the conclusion that I won’t ever fully heal. I’ll just learn to live with the wound. And you know what? That’s okay. That wound will be a constant reminder of what my goal is and who Jillian IS.

So..(and I’m not talking about me here because I am fully aware of what I need to do for me. After all, I’m fifty now, and I can do what I want) if you know of someone who has lost someone they love, initiate conversation that will include their loved one. They may tear up. That is just confirmation that it still hurts. Deeply. I really believe that a grievers fear is that their loved one will be forgotten. Their loved one mattered. They shared this life with us in some way. They still matter.

Our Heavenly loved ones will continue to be a part of our lives until there is no longer a chain link fence separating us.

Peace~

** A heartfelt thank-you to Dr. Brent Boyce, Saginaw Bay Dermatology and the family and friends of Jillian. 

Melanoma=Fear

These last two weeks have been  particularly hard. I don’t need to analyze why. I know why. Two weeks ago a young Melanoma warrior was sent home on Hospice care. I’ve meet Briana several times. She and Jillian shared the same doctor. There were times when we would bump into each other at  U of M. Briana is a sweet, loving young woman, with a smile that lightens any room. When I heard the news  Briana was going home, it threw me back to those weeks when Jillian was home on Hospice. This is not an easy time for the family, and it  saddened me deeply.

As a caregiver, we have a job to do. We make those last week’s/months as comfortable as we can. It’s as if you are on autopilot. Every moment is filled up caring for that loved one. Making meals and serving them, administering any medications still needed. Making sure the loved one is comfortable. Helping with brushing their teeth, taking a bath. Dealing with nurses that come in once a week along with social workers making sure that we, the caretakers are doing okay. Changing bed linen, moving your loved one from one position to the next to avoid bed sores….hugs, rubs, talks…..Looking back on those last weeks, Jillian was such a gracious patient, never a complaint. It was an honor for me to have had the opportunity to care for her.

After Jillian died that Saturday morning six weeks ago, her husband Steve and I were crying, arms wrapped around Jillian, and each other. He looked up at me and said, “You did good”.  I replied, “WE did good”. And we did.  We made a great team, Steve and I. I know that I have absolutely no regrets. Not one. I’m so thankful for that.

Now Briana’s family is going through something very similar. And early this morning I found out that yet another young woman, Jennifer, who has a husband and a young son, has been given the news, “there is nothing more we can do”.  Jennifer has been fighting melanoma with such tenacity. She has been an inspiration and a joy to anyone who has had the pleasure of “knowing” her. A very big part of the melanoma community, along with Briana.

This brings me to my main topic. FEAR. I want to acknowledge those who live with fear.

The melanoma community is a very tight knit group. There are several support groups available depending on what your personal situation is. You could be the one battling melanoma, a caregiver, a mom, or finally, perhaps you’ve transitioned into the grieving group. Whatever the circumstance may be, these people stick together and support one another. And they FEEL. They hurt deeply when someone they’ve cheered on, compared notes with, been encouraged by, hears those dreaded words.

And then, the reality hits. This could be me. This just happened to my loved one.  Or, why am I so lucky that this isn’t happening to me? Why are the treatments working for me, and not for those women? This could be my daughter, or my husband, or my wife. Fear.

Living with melanoma, if it has progressed, means scans every three-four weeks depending on the treatment. Fear. You have about one good week during that time where your heart doesn’t skip a beat each day thinking about the looming scan appointment. Some call it Scanxiety.

Fear- as you are sitting in the Dr’s waiting room, waiting for your name to be called to go over the results. Your knees are so weak, you can barely walk without stumbling. Racing heart, sweaty palms, shaky hands, dry mouth.

Fear- as the Dr walks into the room. You try and read his face. Good news, or bad news?  Your heart is beating so loudly, everyone must hear it.

Even living with Melanoma when it hasn’t progressed can mean fear. Because you’re constantly aware that one renegade cancer cell can travel and invade the lungs, liver and brain. And these fears are real. It happens. I read a post from a friend Becca last night where she writes, “Having Melanoma means buying a two year planner and wondering if you'll be around to use the whole thing”.

Melanoma=Fear

I’m not sure you can sugar coat that. Oh, we learn to live with it, we find ways to live in spite of it. But if anyone thinks it doesn’t take great strength and courage to try overcome that fear,  and make a normal life once that cancer card has been dealt, is kidding themselves. These warriors are fighting for their lives every single day. If they aren’t waging a physical battle with melanoma, you can bet they are in a constant mental battle with the beast. And they do it with spirit, grace, and courage

So, if you know of anyone dealing with melanoma, or any cancer for that matter, look into their eyes and tell them how proud you are of their fight. Many of these warriors fight in silence. That kind word, that hug might just make their day, and lessen some of their fear.

For the young readers of mine- please do yourself a favor and stay out of tanning beds. Use sunblock, cover up.  Do it for yourself, for your family, boyfriend, girlfriend. Do it for anyone who loves and cares about you. Melanoma is not anything to mess with. It’s deadly. And please believe me, it isn’t pretty.  Don’t get yourself into the situation when you repeat Jillian’s words, “I wish I could turn back time”.

For Briana, and Jennifer, I love you both so much. I’m inspired by you. I will continue to pray for you as you continue on your personal Melanoma Journey.

Peace~