Thursday, October 29, 2015

Donna Moncivaiz- We Love You More!

I was in Tennessee when I heard that Donna had decided to go on Hospice care. She told me melanoma had reared its ugly head once again, and had spread. There were no more medical treatments available. 

We talked about her amazing family and how they were taking such good care of her and how much she loved them. We ended our conversation with the promise that I would come to Chicago the following Friday and we'd enjoy pizza and beer together. I never made it. Donna made her way to heaven that day, October 23, 2015, leaving behind her family, friends, and the melanoma community to mourn her passing.

It has taken me this long to blog about my friend, and my words are inadequate in describing what her life meant to those who loved her. Instead, I am going to share some stories that were written in her honor. Please feel free to message me if you would like me to include yours. .

Today Donna is being laid to rest. Her family plans to have a celebration tonight as it is also Donna’s birthday. So for those unable to attend Donna's Celebration of Life, please join together at 10:00 PM ET and raise your glass in her honor. Cheers to the Winner!

~Peace Donna. We love you more

Tuesday, October 6, 2015

Keeping Melanoma In The Spotlight....

October is Breast Cancer Awareness Month. I see pink where ever I go. You see pink, you think breast cancer. I know several people who have been touched by breast cancer. My sister was involved with a program where a patient recovering from a mastectomy could join other women dealing with similar issues. There was a retreat where these women learned to fly fish. What a neat idea. This helped strengthen the muscles and also helped cancer patients to know they are not alone.

I believe that what ever cancer someone is dealing with, the emotions they face are the same. I do wish  that melanoma cancer and other cancers got the same recognition as breast cancer does.

I was researching that topic last night trying to get some answers. One of the reason's is marketing. So....What can I do to market my mission? Billboards. I think it is important to keep melanoma on the radar visually. I get email and messages from all over the country from people who have seen the billboards.

I had the below creative done awhile ago, but did not have funds to get this up and running. This is of actual loved ones who have been stolen by melanoma.

Would you be able to help by donating? The cost of one billboard is $1650. I've already spoken to the person I work with and he thought that although you would not be able to see the names clearly on the billboard as you pass by, the message, much like a wall, would be powerful.

If you can donate- we can help to make melanoma cancer a household world. We are in this together. Fighting.

What do you think?

Love and Peace....

Friday, September 25, 2015

I Was Here....

While I was pregnant with Jillian, I didn’t want to know if I was carrying a boy or a girl. I wanted to be surprised.  Already having two boys that filled my world with busyness, noise and joy, I said that it didn’t matter. But if I did have a girl, I wanted to dress her in pink dresses with pink bows. I wanted to have that strong mother/daughter connection that I had with my own mother. I wanted a girl.
On September 24, 1989, I gave birth to that little bundle of pink. Jillian. My precious little girl. It didn’t take long for me to realize that the pink bows and dresses were to be soon replaced with her brother’s high-top sneakers, no shirt, and a ball of some sort. A young force of energy that knew no boundaries surrounding her abilities. A confident, loving, funny, caring human being.

When Jillian died that cold December morning, the bright light that was her essence went with her. The light was extinguished not only in my heart, but in the world around us. She mattered. She was here. She interacted with others. She loved and she played. She had a sister and brothers, a husband. Grandparents, in- laws, nieces and nephews, aunts and uncles that she loved and cared about. Friends.

She mattered. And she was here.

Each day can be a struggle for those who have lost a loved one, but there are two days a year that are especially difficult. The birthday of the one missing, and their death anniversary. Two days where we fall apart and really drink in our grief. We NEED to do this. We need to taste each drop of pain, sorrow and loss. It is our way of honoring our loved one. And we do not need to sugar coat it or pretend it’s okay. Because it’s not.

Now, I’m not saying that yesterday, Jillian's 26th birthday, was all black and gloom and doom. It wasn't. This is where God comes in. I was given little “God Gifts” all day long yesterday.
  • My kids  and only grand kids moved to Tennessee recently. The twin girls are just eight weeks old. Right when the tears began to flow in the morning, I receive a picture of those babies, reminding me that this is life. There is joy. And even though I am not there to watch them grow up, I’m blessed with a son and daughter in law that make it a point to include me. 

  • At work I’m blessed with a boss and co-workers that truly care and recognize that this is a rough day for me. 

  • At my favorite greenhouse , I was able to talk with the owner and cry on her shoulder and talk about God’s grace. I left with several things to plant, and a gift just for Jillian from her. 

  • Dinner was Hungry Howie’s and beer, in Jillian’s honor. All the kids except the southern ones were there, along with friends, and Jillian’s Steve.  It is a gift in itself that we have stayed close, even though life moves forward. I’m blessed to stay in touch with Steve’s mom and dad, and their family. I love them all dearly.

  • Josh and Kaytie celebrated in Tennessee by singing Happy Birthday with cupcakes, Charlotte blowing out the candle. 

  • I completed Jillian's celebration by texting with Joshua from 2am until 3am, expressing the anger at our loss, but knowing it’s okay to feel that way. And to feel the support and connection,  the love between our family. Oh my God. If that isn’t a gift, I don’t know what is. 

So, things are hard, and that’s okay. We will get through this in our own way. But please be patient with us. And for goodness sakes, please don't offer your opinion on how or what we should feel. That will only shut us down.

For those that are going through the sharp knife of grief, I pray for you. I pray that for one minute you will be able to see that silver sliver of hope, the sparkle of joy, and to know that your loved one mattered. That they still matter. And so do you. And that it’s all okay.


Friday, September 11, 2015

The Ball and Chain....Let Me Share Yours....

Shame. Regret. Understanding. Confusion. Joy. Sorrow.

Yesterday was the day from hell. And although I’m on the other side of the darkness of the day, I’m left with yet another lesson while my inadequacy is exposed layer, by layer, by bloody layer.

As I sit here waiting for the words to come, to express what I need to share with you, I actually chuckle at the irony that I’m private and don’t like feeling exposed. That I hide from my feelings. I’ve been accused of that. Well, the first part is true. I really don’t like being exposed. But my quest to continue to share Jillian’s story, my story and my family’s story is stronger than my embarrassment. I go through this battle inside each time I get ready to post a new entry. What a joke. A promise is a promise, suck it up Buttercup. So here goes….

Jillian’s birthday is coming up. The anniversary of my Dads death is just a few days away. It’s a month filled with memories, reminders of two very special people who are playing pranks on one another in Heaven.

I can honestly say that I have no regrets looking back on that difficult time. Except one. I really, really wished that I could have gotten inside of Jillian’s head. I mean deep inside so I could feel and share her deepest concerns, her worries, her fear. I knew all about my fear, but I needed to get to the place where I could feel what she was feeling.

Since July I’ve been dealing with some health issues. I’ve had a couple of kidney stones, one is still hanging out, not quite ready to make an appearance. It feels like I’m living with a ticking time bomb, never knowing when I’ll get that first twinge that something isn’t quite right. And not to minimize the pain of labor, especially since I’ve had four children of my own, but damn it hurts. I may even go so far as to say that it is a little worse than childbirth. Or I may not. It just might depend on who I’m talking to.

While I was in the ER in Tennessee, the CT scan picked up a spot on my liver. What the heck. I’m here for kidney stones. I don’t have time for this. I have grand babies I need to love on.

After I arrived home and several doctor appointments later, I had an MRI with contrast scheduled to help diagnose the spot on my liver. I’d never had an MRI before, while Jillian had too many to count. Most of my friends in the melanoma community have had MRI's.  How hard can it be?

So this past Tuesday, I got to meet Mr. MRI up close and personal. He is loud, and obnoxious. Any thought of sleeping through the procedure was blown with the first siren screeching, banging, clanging noise piercing my skull.  Take a breath in. Breathe out. Take a breath in…hold it…seventeen seconds….breathe. One hour later, I left with an awful taste in my mouth, a splitting headache, and an upset stomach. That is when the first trickle of fear started to snake its way into my thoughts.

This is NORMAL for a person fighting melanoma. Normal protocol. What a fool I am taking for granted what someone with cancer has to deal with on a regular basis. And that is just one thing. Only one thing.

So now I get to wait for the results. I’ve heard that story many times. The fear and anxiety that overshadows the day while waiting for results.  I’ve lived it with Jillian, but now I get to experience it for myself,with my own body.

Today, living in a technical world, we are able to see our results online. Sometimes even before our doctor does. Wednesday night I received an email telling me that I have new results on my health portal. Of course I’m going to look. I’ve looked at all the other test and lab results and I’ve been pretty good and deciphering the medical jargon.

There was a term on the radiology report that I didn’t understand, so I checked with my friend, Dr. Google. Google scared the crap out of me. Google kept me up most of the night researching.

……..“due to imaging features often raises a concern of a malignant process rather than a benign one”.  Crap.

I spent the day yesterday in fear, waiting for my doctor to call me. I was finally able to go over the report with him late afternoon, and I raised my concern. He reassured me that he had talked to two radiologists, and agreed that everything looked okay. Due to our family history with melanoma and just to be on the safe side, he ordered more blood work to see if anything was “cooking”. The results from my blood work came back fine today. I have the option to have another MRI in six months to make sure nothing has grown or changed.

What’s changed is me. I wanted to know what Jillian was feeling. I wanted to get into her head. Well I did. For one night, one afternoon, and it wasn’t pretty. I am ashamed at how I’ve taken my own health for granted. I’m appalled at my lack of understanding when I hear about a friend who has discovered another tumor. Another scan scheduled. I had one day. Just one day trying to figure out how to live with a possible cancer diagnosis. The fear I felt at leaving my children, at not seeing my grand kids grow up. The joy I felt for a minute thinking that I’d get to see Jillian and my dad. That really did make me smile.
But what I’m struggling with today is the knowledge that the friends I’ve grown to love so deeply have to live with this fear every single day. They go about their business between scans and treatment,trying to live each day the best way they can. They go to work. They take care of their families. They take vacations. But there is always this thing. The ball and chain they lug with them at every turn, while the darkness threatens to swallow them up, trying
 to pull them down into the abyss. 

And how they fight against it, and try to find a balance of acceptance. How they fight for you and for me, just to stay alive.

You are true, brave warriors fighting a war. A physical war, and a mental war. Each day.

That is just so humbling to me. I am ashamed that I didn’t feel it completely before. I sure hope you can forgive me. I am really, truly sorry.

Jillian- With what I’ve learned yesterday and today, just when I thought I couldn’t be any prouder of you, I am. You’ve been busy teaching your mother about life.

Thank you.

Thursday, September 3, 2015

The Choice....

 I love the fall season. I love when the nights become longer and the days drift in to a lazy coolness. I love fallen leaves, especially now since I’m not spending all of my Saturday's removing them. I love the fall colors. And I love Halloween.

But with fall comes a heavy sadness. I become teary easily. I have less patience with myself and others. It takes me a few days to realize that I’m moving into the season when Jillian started to go downhill. And once she started, the ball gained speed with its momentum. Once that avalanche shifted, there was no stopping it.

Until it stopped all together. On December 29, 2012.

 I’ve written several times about grief and some of my Pet Peeves. But this particular post is directed toward those that have no filter. The ones that have no field of reference. No vision of what it means to lose a child to melanoma, a mother’s most precious gift.

They haven’t seen their sister waste away from brain tumors until they could no longer feed themselves. They haven’t been to the place where their once fiercely independent child can no longer get out of the bathtub without help. They haven’t had to sit and listen to the wracking sobs coming from a sibling, when their own heart has been shattered into a thousand pieces.

 This post is for the persons that sit safely behind their judgments.
 Because just when I’ve thought I have heard it all, I hear that Jillian had a choice.That most of you with melanoma had choices.

That these beloved people, our family, my daughter, my melanoma family, have chosen to spend their time primping and preening. They’ve chosen to get that beautiful tan by entering into a tanning bed. Or by laying in the sun. And because of that choice, they get what they deserve. They get melanoma. DUH!! Now I feel better. Now I know!! Thank you for your insight!

 Shame on you.

 I am hoping that you never, ever, in a million years have to experience the loss and the pain of losing a loved one to this vicious disease because of a choice they've made or otherwise.

But if you do. I’ll be here to support you, and to love you. This is my choice.

 PS. Do Not Mess With Mama Bear.

Monday, August 24, 2015

My Hope....

The internet has been buzzing, my email has been flooded with articles, news stations across the nation are all talking about former President Jimmy Carter and his cancer diagnosis. Melanoma. Jimmy Carter has metastatic melanoma. I was saddened, along with many people, to learn that his cancer has spread to his liver and his brain.

Mr. Carter plans on receiving a relatively newly approved drug, Keytruda, as well undergoing targeted brain radiation.  He is 90 years old. There are far more options available in treating melanoma than there were when Jillian was diagnosed. 

I am selfishly hopeful that the knowledge and awareness generated with President Carters melanoma diagnosis will open many doors. I would love for melanoma to become a household word so that parents and our children are educated about the disease and how to prevent it. That tanning beds will be a thing of the past. That our young people realize that melanoma in not just an old person’s disease, and that it can happen to anyone, at any time.

So beautiful friend of Jillian’s who is laying on the beach right now? Family members who love that tanning bed? Listen and hopefully you’ll learn.

Because no matter what a person’s age, melanoma really doesn’t care. It is a heinous disease, and it shatters lives where ever it takes residence. I’ll be picking up pieces for the remainder of my days.

And I really don’t want that to happen to you.

My thoughts and prayers go out to President Carter, his caregivers, family and friends.


Monday, July 27, 2015

The Gifts of Life. Welcome, Precious Children, Welcome....

My heart is full tonight. I’ve been trying to process and sort out the last couple of weeks with little success. Until today.

I’ve been struggling through my grief since Jillian died. One day at a time, one tear at a time. I hear her voice, “Fall seven times, Stand up eight”. I know, honey. I hear you. I do try. Am I trying hard enough? I think I am. But I miss you. I’m angry. And there are days that I just really don’t care. I love my children. I love my family and my friends. And yet…

The summer is screaming by me, with no signs of slowing down. I’m not slowing down. I was hoping that our long awaited vacation would help with some of that. Would force me to slow down and just be.  And it did.

Just before we left for a week at the cottage I’ve rented the last few years, I was admitted to the hospital with a kidney stone. I’m rarely sick, and having to come to terms with the fact that I’m not immune to illness rattled me. But what really opened my eyes is the health I’d been taking for granted. I’d been running, chasing, hiding and not appreciative of the blessing I live with every single day. My health. I’m ashamed. This is not the first time God wacked me over the head to get my attention. J

On a starlit evening, while fishing with my family, I look up to our vast universe, shining and blinking in all its majesty. I’m brought down to the level where I need to be. Grateful. Grateful for my family. Grateful for our Universe, and grateful for the gift of life. 

"I am here tonight. I am alive. I'm with my family, and I'm making memories. It's a pretty big deal". 

Today. Today my world has been blessed with two beautiful new souls. My twin granddaughters. I’m overwhelmed with the beauty of it all. The miracle of birth. The love, the strength and the unbreakable bond of family.

Thank you Lord, for Your everlasting gift of life and for all of your continuous blessings. Thank you for Joshua and Kaytie. Please continue to watch over them in the weeks and months ahead as they care for their children.  

Welcome, precious girls. Your Mimi loves you.

Sydney Jillian Hayes 6lbs, 2oz
Cheyenne Julia Hayes 5lbs 2oz

~Peace and Love