Connecting the Dots~ Part I

Since September, when we received the news from our oncologist at U of M that Jillian’s tumors were growing, I have been really taking a good look at my life. I feel as if all the experiences I've had in my life have been preparing me for this time. Right now.

When I was newly married to Jillian’s dad, my best friend was diagnosed with Hodgkin’s disease. At the time, cancer wasn’t something that happened frequently, especially to young people. At least not in my secluded world.

 Debbie fought the disease for two years. After she died, I felt so alone. Her parents were dealing with their own grief. I didn’t have anyone to talk to really. I had other friends, but what I really needed was time with her family. I still needed to be connected to her somehow. I wanted to go through pictures of her with them. I wanted to laugh about the time we all drove back from Florida and her younger brother threw up in the hat we won at Disney World. I wanted to cry with them, laugh together. I just needed to share. I am convinced that if I had more opportunity to talk and grieve with them, I would have handled the loss of my best friend a little easier. As it was, it took me ten years to think of her without crying. I STILL think about her every day.

I have been receiving so many heartfelt messages from Jillian’s friends. I know they are struggling with losing their friend, classmate, and team mate and trying to make sense of it all. Several friends are using Jillian’s page, "Jillian Hayes- Fall Seven Times, Stand Up Eight" as a place to remember and to share and to post photo's. Many have lost friends recently,and it is frightening to face their own mortality when they lose one of their own.

Because of my own experience, I want to make myself available to whoever needs to get in touch with me. Message me on the page, text me if you want. Plan time to come see me so we can talk if you’d like. For those that know Jillian, she would want this.:)

This is just one of the dot’s that have been connected for me. The others can wait for another day to write about.

Love and peace~

When Tragedy Strikes....

Tragedy can strike at any time and to anyone. It can disguise itself in many different ways. It can be a loss of a parent, a sibling, spouse or a friend. Or a child.  It can be the breakup of a relationship, or the loss of a job. Either way, when tragedy strikes, it can be crippling.

Watching my child decline a little bit each day, knowing the end is near,  is the hardest thing I’ll ever have to endure. Nothing can compare. Ever. Watching Jillian cry as she understands exactly what is happening  to her, and that I can’t fix it, is devastating to my heart.

I just got done reading some of the face book posts that people have been putting on her wall and on the face book page I created for her, Jillian Hayes- Fall Seven Times, Stand Up Eight. Tears slowly slid down her face as I read the beautiful, heartfelt letters from friends, schoolmates and soccer teammates. It is frustrating for me because I cannot get into her head. I still cannot wrap my arms around the reality she is dealing with now, facing her own death. I just tears me up inside. I can’t make this go away like a mama should be able to. All I can do is love her through it and to assure that she has made a huge difference in everyone she has touched in her short, interrupted life. And how much I love her, and how proud I am of her.

When I finished reading all the posts from her friends, I asked her if she wanted to hear what I wrote for her. She nodded her head yes. I am happy that I got the chance to tell her once again how special she is to me, and what she means to me. I’m happy that I was able to tell her about her Grandpa’s promise to me before he died and that he is waiting to greet her with open arms when she gets to heaven.

Before tragedy strikes you or your family, if you have words that are unspoken to someone who is special to you, say them now.

Here are some of the things I read to her today. Words to Jillian from her mama.

This hurts Jillian. From the moment you were born into this world twenty three years ago, you have been teaching me and everyone around you what it means to live. As a child you had such a zest for life, which continued on as you became a young adult. You are a magnet. Others are just naturally drawn into your light. That inner light grew brighter with each passing day, gently touching people where ever you went.

Just as your life was getting started, you were given the most difficult challenge any young person could face. And like any challenge on the soccer field, you took this one on with fierce determination and courage.

You, my daughter, have been my precious gift. You have taught me what it means to Stand. To be able to see joy, love and laughter in the middle of so much strife. You have inspired me and so many people throughout your melanoma cancer journey. People from all over the world know your story, and you have given them Hope when they couldn’t find it themselves.  I am so proud of you sweetie and so incredibly blessed to have been your mama.

So now, that light that is you will shine on within us. It will burn brightly and pass from one person to the next, spreading joy and love and laughter. There is no stopping it.

Your job here on Earth is almost complete. I promise you that I will pick up where you left off, shining your light for all to see. I will make you proud,

Well done sweetie, well done.

Peace~

And the Greatest of These.....

So we weaving down a new unchartered course on Jillian’s Journey. It has been a long, winding road with many, many, twists and turns. I won’t lie. This whole thing just absolutely sucks. Watching someone that you love, especially a child, declining a little each day is heart wrenching. No, it’s worse than heart wrenching. It’s devastating. And it could even be crippling for some.

I wanted to share one thought with you today. Love.  I have learned more about love on this Cancer road than I ever would have imagined possible. The love for family. The love between two young people as they learn to live with this horrific disease. The love for siblings, the love for parents. The love shown to us through friends. The way my family has stuck together and supported each other every single step of the way, even when we weren’t always so loveable.

We still have more pavement to cover, but  I know without a doubt that this family will have no regrets.

I must be the luckiest mama bear alive.

Peace~

Just a Little Diddy.......

Monday. The day started out like any other Monday. Only on this Monday our journey with melanoma took another turn down the cancer road.  When I picked Jillian up from Steve’s office, it was quite obvious that there had been changes since I’d last seen her. She was with Steve’s family over the Thanksgiving weekend so  I hadn’t seen her since last Wednesday. She was having a real difficult time walking. In fact, Steve had to carry her into my truck. Once Jillian was settled, we took off for our weekly Monday blood draw and of course breakfast.

Jillian and I have become “regulars” at a local breakfast restaurant. She looks forward each day to her egg and bagel. I look forward to my cup of coffee, and our morning chat. I knew it would be difficult getting her in and out of the truck that morning so I asked Jillian if she wanted to use the wheelchair this time, or to try walking. I suppose you can guess which option she chose. Walk. Okay then. Let’s walk. By now, I know enough about my daughter not to try and change her mind. Another thing  I  never want to do is to take away any sense of independence she still has. As difficult as walking has been these last few weeks, she never stops wanting to try. It doesn’t stop her from doing much, it just takes longer and with greater effort.

When I got her out of the truck, I knew within two steps that we weren’t going to make it. The left side was just too weak to support her weight. So, as she was standing against the truck, I walked back to get the wheelchair. I didn’t get far before she crumpled to the ground. It happened in slow motion. She just sort of folded into herself.  I rushed to her side to help her up, only she wasn’t going anywhere. Her eyes were fixed and staring into space. Just blank and open. She wasn’t with me. I rushed into the restaurant and had one of the waitress’s call 911. Several people came outside to help, to bring blankets to cover her up. In what seemed like a lifetime, Jillian came around. It took her a few minutes before she was fully with it, but I was never so happy as I was in that moment to see her talking and joking with the EMT.

While in emergency, Jillian had a CT scan of her brain which showed that there was change. The tumor looked larger, and there seemed to be swelling and bleeding. Jillian was admitted into the hospital so we could find out what what was going on. She had an MRI that evening which would show us a clearer picture. Which it did. It confirmed that Jillian’s tumor was indeed larger, that it had shifted, and that there was swelling and bleeding. And then we got the words that no mother ever wants to hear. “The chemo isn’t doing enough. I’m sorry, but I know you have talked with Dr. Lao about this possibility when you were at U of M last September.

These are difficult......................................................................................................"

White noise. NO. It has to be working. This is my Jillian. We fight, we try something else. Just fix this. Shit.

I can’t really remember everything after that except that Steve was on one side of Jillian’s bed, I was on the other and Steve and I were holding hands. As a mama, you’d think it was me giving him support. But it wasn’t. I was reaching out to him for support, and he gave it.

This is where the content of my story changes. Last night while I was writing this post, my mind closed after the first few paragraphs. I was tired and exhausted and the thoughts and words weren’t coming. So I put down my computer and went to sleep. My bed felt pretty good after the night in the hospital on that hard couch. I woke up with that O' so familiar nagging feeling that what I was writing about wasn’t what God needed me to say just yet. So with my eyes not even open yet, with tears running down my face, I listen. I’m hoping that the kids won’t mind.

Jillian and Steve met over four years ago. Jillian was 19, Steve was 20. He was there with Jillian that day when we first heard from our primary doctor, “I’m sorry to tell you this, but you have melanoma. It’s Cancer”. I can remember the doctor talking and explaining what we needed to do. A surgery to excise the area around the mole that had been removed from her back, along with two sentinel lymph nodes ….check up’s every three months. The pet scan that was miraculously scheduled one year later which plopped us right square in the middle of nowhere; inside the belly of the sneaky black beast. Stage IV melanoma.

Four years later Jillian and Steve are still together. Some may think that a young kid at twenty would run for the hills, but this young man has stayed and loved and supported Jillian through all of her treatments. Through the tears and everything in between. He is still here. And believe me, it hasn’t been easy. He has had to deal with appointments back and forth to U of M, while juggling his own college schedule, plus a full time job. And mama bear. But he is still here.

Can you look back to where you were at the age of twenty? Or if you are around that age, what are you doing? Do you picture yourself caring for someone that has cancer? Do you even know what it means when you hear someone is a caregiver to a person with cancer? Do you think about what it’s like to have no use of your left side? It means helping that person to get in and out of bed. It means help with getting dressed in the morning. Sorting and dishing out meds. Preparing and cutting up food for a meal. Bathroom needs, hygiene. Think about it. This young man has seen more than most of us will see in their lifetime. He knows the meaning of commitment. He is still here. I know his own mama bear is proud.

Two weeks ago, after Jillian’s last chemo treatment that Friday, I dropped her off to Steve after being at my house all week. They hadn’t seen each other since Monday. I saw the pure joy in his eyes when he saw her. I saw the love. There was no disguising it.  It reminded me of a time a while ago when Jillian and I were driving somewhere last year. The song” Jack and Diane” was playing on the radio. She turns to me, smiles and says, “That’s me and Steve. Just two poor college kids”.

Jillian is now back home with me with Hospice care. Steve has moved in and we will work out the details as they come up. Their other roommates and friends, Tia and Jared, are staying off and on too as their schedules permit. That makes 6 dogs in the house. Six BIG dogs. But what’s a little hair?  For now, Steve and my family are making it work. Team Jillian.

I’ll post more about my thoughts as a mama, but for today…

Just a little diddy about Steve and Jillian……..

Love~

Thankfully Thankful...

Last evening I had dinner with an old friend of mine. Rhonda and I met over 12 years ago. In fact, it was because of her that I am currently working with the company I’ve been with these past 12 years. I always enjoy my time with her. Rhonda has a depth about her, an understanding of the human spirit that inspires me along with a real yearning to learn as much as she can about people, and herself. As we were talking last evening, she brought up the losses of the last year.

 My past, my present, and my future.

 My Past: It’s been hard living with absence of my dad. Vern was a strong man. A man’s man, a family man. I miss him, I miss his presence. I could talk to my dad, and it didn’t matter what we discussed, his support of me was unconditional. I miss that. I miss that I was so special in someone else’s eyes ,that it didn’t matter if I was right or wrong. I was his daughter and he loved me in spite of me. The love of a parent towards their child is one that is sacred and needs no explanation.

 My Present: This past year has been a difficult one for Jillian, especially the last few months. Since August she has lost all use of her left arm due to the significant growth of the tumor in her brain. She is now experiencing the same weakness/loss in her left leg. Walking has been a challenge for her, but one she tackles every single day. We joke about her “shuffle” when getting around obstacles. When I help her in and out of my truck I get the playful comment, “Mama Bear miss my hugs”? Jillian’s humor and grace is evident in everything she does.

My Future: My family has lost its innocence in everyday living. We will always walk with cancer as our companion. Although none of us know what the future holds, and there is always fear and uncertainty, maybe it’s not such a loss after all. Perhaps it’s a blessing and an opportunity to share and to give hope and encouragement to those who are experiencing similar trials. Yes, that’s how I’m choosing to look at my future.

As we prepare for Thanksgiving , we reflect on the things that we are thankful for. I am thankful for having strong, loving parents. For giving me the foundation of love and support that I have been able to draw from through these many hurdles. I am thankful that my children have experienced the love and joy only a grandparent can give them. To show them good role models and to learn what it means to be loving, selfless parents.
 
I am thankful that I have been given the opportunity and the privilege to walk through this cancer journey with Jillian and the rest of my family. It has opened my eyes wide with wonder and amazement at the human spirit, the resilience and the grace of one strong warrior. It has shown me what is truly important in life, in relationships. And what isn’t.

I think what I’m the most thankful for this year is the gift to be able to feel God ‘s presence through it all, and the faith that He will continue to be there for us in all His Glory. Some days I get a glimpse into His window.

My past, my present, and my future.

 I like what I see.

 Happy Thanksgiving!

 Peace~

I Acknowledge You...

It’s quiet now, except for Pandora playing softly on my computer. I love this time of day where I can be still and listen. And I’m not talking about my music. But as I’m listening to the” shuffle” playing, I think, “When was the last time I just quieted my mind and  enjoyed my music”? I really can’t remember when. Is this what God is trying to tell me? No, it goes deeper than that.

I started writing this blog earlier this evening, and deleted everything I’d written. I was writing about Cancer and the words a person associates with cancer,along with their definitions. Chemotherapy, Scans, Tumors, Surgeries, Radiation…and the list goes on ....

Before our lives took this unexpected detour, I knew several people over the years that had cancer. But did I really? I don’t think I knew them at all. At least not their core, not their innermost self.

My best friend died of Hodgkin’s disease at the age of 23. I was 24 at the time, and very busy with my oldest son. It took me 10 years before I could think of Debbie without feeling that thick knot form in my throat. I didn't have anyone to talk to about it. No one who would just listen to how I felt. Her family was too busy dealing with their own grief to give me consideration. Not their fault. It was just that way. But as I look back now, over 20 years later, I wonder how much did I know about Debbie’s struggle? She was my best friend. I’m supposed to know these things.

Did I ever think what it must have been like for her to have been given the initial diagnosis…”you have cancer”. Did I realize her fear? I didn't begin to understand the thoughts she must have been dealing with at the time. Why me? I’m only 21, I have my whole life in front of me. Fear.

And then the treatments. She had several surgeries as the tumors continued to pop up inside her body. After surgery to remove those tumors, she had chemotherapy. And oh, was she sick. But did I realize what sick meant? Did I picture in my mind how her stomach was cramping up, how she tried to fly to the bathroom before vomiting all over her bed? Did I picture her kneeling over the toilet on the cold tile, with her hair caked with vomit as she heaved and heaved until the only thing left was acid bile? And how weak and utterly spent she was. No. I did not.

Debbie’s fight against cancer lasted two years. I didn't grasp the days in between treatments where that nagging C word followed her everywhere she went. I didn't understand what it meant when she told me she was going the hospital for more scans. The fear. The dry mouth as you are waiting for your name to be called into the Dr. office to discuss the results. Ugh. Debbie’s scans showed that there was a tumor on the sack surrounding her heart. Cancer was closing in. The treatment she decided to take was a bone marrow transplant. She never made it home. I never saw her again after our Friday night goodbye’s, before she headed to St. Louis. She died in the hospital from complications due to the treatment.

Melanoma isn’t about words and their definitions. Melanoma is about real people struggling every single day. Every day since that first phone call, “We have your results, we’d like you to come into the office to discuss. No, unfortunately, I can’t tell you more, as I’m only the nurse. The Dr. will see you tomorrow”. The fear, the uncertainty and confusion.

Whether it is a diagnosis that requires ongoing treatment with scans every three months, or with the coveted NED (no evidence of disease) victory cry, these warriors battle daily. And with Melanoma, the battle continues for the rest of their lives, until there is a cure.

So in conclusion, when you hear of a friend, family member, co- worker or neighbor that is walking on the Cancer road, acknowledge their fight. You may not see evidence of their battle, but I can guarantee you, there are scars. Words may not be necessary, but a hug and a listening ear is a gift. And one that they have earned, and one they will cherish.

Peace~

The Quest....

“It will take a miracle for you to survive”. Those words are seared into my brain. Those were the words spoken to us from the surgeon who was about to cut away half of Jillian’s liver. From a Doctor. From someone you are trusting and looking to for answers. Those words that were delivered in such a harsh, insensitive manner. 

 I will never forget watching the color drain from Jillian’s face as she sat on the examination table. I will always remember looking at my kids from across the room seeing  their tears fall softly from their faces. My world stopped, it was if all the oxygen was sucked from that room. The room was silent except for the occasional sniffle.

 And I then I remember feeling this fierce protectiveness bubble up inside me.. And the anger. How dare you. It was those very words that motivated me to prove him wrong, and to begin to navigate my way into the belly of melanoma. It is not a pretty place.

I’ve learned much these last two years. I’ve seen firsthand the resilience, determination, and joy, coming from a young 21 year old woman who has been handed a cancer card. I’ve seen what love can do. I’ve seen how extended family members and friends rally around us.  I’ve been blessed to have met so many new, wonderful people along this road as we meander along with melanoma as our partner.

I’ve also seen a darker side, and have taken some hard hits because of it. But my faith remains strong through it all, and I KNOW without a doubt that we will see the other side of this with love, compassion and a peace that surpasses all the darkness that threatens to suck us in.

I will continue to fight for my daughter and for all of those Faces that are currently battling this war against melanoma. And in doing so, spreading awareness where ever I go. That is my quest, my focus. My mission. Nothing will deter me, or my family from achieving this goal.

Fall Seven Times, Stand up Eight.

Peace~