Teetering on the Edge....

Have you ever felt that you’ve reached your limit? I’m not talking about the times when we say that we’ve had enough. I’m talking about the times when you really feel that just one more thing will push you over the edge. I’m talking about the place where if you let go of the tight grip that you have on yourself, you may never find your way back again. I’ve been teetering on that edge these last two weeks.

This past week Sunday, my mom brought my Dad home from the hospital with Hospice care. Probably one of the hardest decisions our family has ever made. Between my mom, myself and my sister, we have been caring for him at home. These are his wishes. So far, we are doing okay. It’s hard on my mom, I know. There are times I can’t be there for her, but she has been coping. She’s small, but that woman is tough. And she’s only 78.

My father is a man’s man. He’s that guy that doesn’t say a lot about how he is feeling inside. He is very stoic. I’m sure that frustrates some people, but for me, it’s admirable. Every once in awhile he will tell a story of his time serving in the Korean war. I didn’t even know until several years ago, that he has a Purple Heart from the war. He has been battling diabetes and congestive heart failure for years now. I don’t often hear him complain.

Then we throw into the mix scan week for Jillian. As hard as I try not to worry, the fear grips my heart. It’s those heart skipping moments during the day when I’m focused on something else and I’m reminded of what lies right around the corner. The tentacles of fear wrap around me, and I fight to shake it off. I fight hard. And I pray, a TON.

We had our scans on Tuesday, and the appointment Wednesday with her doctor to go over the results. We sit in the waiting room waiting for Jillian’s name to be called. We rarely get in to see the doctor at the scheduled appointment time, so waiting is what we do. The nurse comes into the room with her clipboard and calls someone else’s name. Ugh. Skipped heartbeat. Finally our name is called, and we go into the Dr’s examination room. And we wait. And my heart is pounding, my mouth is dry. I play a game with myself by trying to read the PA or the Dr when they finally come in the room. If they come in smiling, that means good news. If they come in and ask too many questions about how Jillian is feeling, that means it’s bad news. I’m rarely right.

The news we received yesterday was mixed. Two of the tumors in Jillian’s brain show changes. We aren’t sure if its swelling due to the radiation, or if its progression. We will know this weekend what our next steps will be. Surgery to remove one of the tumors, more SRS on the tumors, or chemotherapy.

So, we pack up our belongings, check out of the office, and head out the door. And I’m in one piece, I haven’t fallen into the abyss. I’m ok, Jillian is ok. We heard some news that wasn’t exactly what we wanted to hear, but we heard good news too. No new tumors anywhere on her body. For me, it felt like a lightness inside myself. I think it’s God. I’ve apologized to Him for teetering so close to the edge, and allowing that darkness to be bigger than it needed to be. I’ll do better next time.

I’m reminded of a sweet memory I have. Monday was my dad’s 83rd birthday. I was kneeling on the floor by my dad’s bedside. I was holding his hand, that big, callused hand, and he was gently rubbing his thumb across my palm. And he was reassuring ME. Without words, but with a simple touch. I will never forget that tender moment I was given. I know I’ll have many more.

So, in conclusion, mama bear is fine. A little battered around the edges perhaps, but starting to get crabby again against this nasty black beast.

Stay tuned.

Out of the Woodshed and Into the Light....

Yesterday Jillian and I traveled to the University of Michigan for her final infusion of Yervoy. It was just the two of us this time, and I always cherish that one on one mother/daughter time. It reminded me of all of the road trips we took together when she was on a travel soccer team. I remember one trip in particular where we traveled to Missouri. We stopped at a Target on the way and purchased the Backstreet Boys CD, Black and White. To this day, whenever I hear one of their songs, I’m taken back to the memory of us belting out the songs as we are speeding down the highway. Fun times!

This road trip was different of course, but just as our soccer days were a part of our lives in a big way, so are our trips to U of M. This has become our way of life. Trips to the Dr for scans and/or appointments every three weeks. It’s what we do, it’s how we schedule our time.

I was encouraged when Jillian mentioned that her vision was improving. Jillian has been having blurred vision for about six weeks now. This is related to the ventricles in her brain swelling due to the swelling of the tumor. She has been on a higher dose of steroids, but has been decreasing them each week. Or so I thought. We determined that there had been a mix up on the dose last week, so where we thought she was down to 2mg once a day, she was still taking 2mg twice a day. Since she didn’t see much difference a few weeks ago when she was taking 4mg twice a day, we are still encouraged that the 2mg additional each day wouldn’t make much difference. We just need to keep an eye out for any changes in vision with the lower dose. Dr. Lao is encouraged at how well Jillian is doing on the combined treatments of Yervoy and Zelboraf. She still continues to have minimal side effects on these drugs. After our appointment with him, we went down for her last infusion, left the hospital and stopped for dinner before the drive home.

So now I’m home and my heart is full. I’ve been told that there are two types of people. There are the coffee table people who lay everything out on the table, and have to talk about their issues right away. Then there are the woodshed people like me. These people find their woodshed, and process things on their own. I was pulled this morning to my woodshed. But today it was more than just processing the events of yesterday. I knew that God had to talk to me, and I always find I hear Him best when I’m surrounded by the beauty of the outdoors.

It’s terribly hot outside as I pull the weeds from my flower garden. This is healthy for me as big silent tears fall to the ground. I’m trying to figure out what I’m feeling, and I’m not rushing it. I’m just praying and asking God what He wants from me. I think I understand now.

As I look back on yesterday, I cannot describe accurately how it feels to see my daughter hooked up to the IV that will administer her drugs. It’s surreal. I see all these people in this big room, doing the same thing we are. They all have cancer, and they are all getting life saving drugs. Some of them have loved ones sitting next to them, many of them don’t. But they all have Hope. And THEY HAVE A FACE!

This brings me to the two things I think God was trying to talk to me about. I wrote before that my friend Mary lost her precious daughter Kristen to Leukemia at the age of 20. A big concern for Mary was that people would forget Kristen, and who she was. She has worked hard to keep Kristen’s memory alive, and to continue to honor her every chance she gets.  

The other thing is a confession. About 5 years ago I was at the Fifth Third Riverbank Run here in Grand Rapids. While I was there, I walked past an old neighbor of mine. I hadn’t seen her for years, since I had moved out of the neighborhood. I had heard she was battling cancer. I saw her with a colorful bandana on her head, covering her baldness due to chemotherapy. It all happened so fast as I was walking, but we made eye contact. She had a huge smile on her face, but it took me a minute to register who it was. And. I. Kept. Walking.  I didn’t stop. I didn’t turn around. I just kept walking. She passed away about a year later. I was too concerned with myself, and what I would say to her. I was selfish and afraid. But now I’m ashamed because I will never get the opportunity again to give her a hug. To tell her she looks as beautiful as she always did, to tell her I would pray for her and her family.

So while many of you are enjoying your Fourth of July festivities with family and friends, take a minute to reach out to someone that you know is battling cancer. Acknowledge their fight. Remember that person who has lost a loved one and doesn’t feel like celebrating the Fourth today. Try and step out of that comfort zone and risk feeling uncomfortable. We are all connected together in this world. Serve one another. Spread your love, and bring Hope to someone who very well may need it.

Pray about it. I will.

Love,

Sue

Below are links to our warriors and a special hug to Kelly, in memory of Casey who left us one year ago today.

The Faces and Scars of Melanoma

The Faces of Melanoma

The Scars of Melanoma

The Beauty in Devastation...

A fellow melanoma warrior, and the author of blog, Welcome to the Hotel Melanoma, Rich McDonald, posted the above picture. This photo was taken last night near Manitou Springs, Colorado. I’ve never lived in an area where there are wildfires, so it’s hard for me to imagine what it would be like living in the path of such destruction. But I can certainly imagine the fear and anxiety it would cause. Your family, your home, your loved ones are being threatened, and there isn’t a damn thing you can do about it. Sound familiar? Yeah…I’m making a parallel.

Melanoma is a beast. It’s a hot dragon that spews out fire and destruction in its path. It has no time table, it has no agenda. It just is. It strips you raw, and swallows up your whole family and everyone around it and then spits you out. It causes fear, and anxiety, and just like that wildfire, there is not a damn thing you can do about the devastation it causes.

This photo ties into the latest efforts in raising melanoma awareness. The face book page, The Faces of Melanoma. This page was created to reveal the Face of Melanoma. To show the world that melanoma cancer has a face, and to share those stories. It’s a place where one can go to post a message to a loved one battling the disease and add a word of encouragement. Or a place just to honor someone no longer with us. I have received several messages telling me that this has been healing for them. Knowing that people care and are supporting them in their journey IS healing.  

The Scars of Melanoma was started because there are those who may see the faces, realize that so and so has melanoma, but they don’t see what lies beneath the face. How can they? This isn’t something that is shared easily. How can they know how vulnerable it feels to the warrior when they step out of the shower and get a glimpse in the bathroom mirror of their scared belly? How can they know how it feels when the scar on your back has gotten three times the size of the original site due to stretching and an infection that set in while trying to heal? How about when our warrior puts on a pair of shorts, or what about the eye patch that is needed every single day?  But yet, these warriors post their scars for the world to see. Why? Because they want to share their stories in the hopes that maybe, just maybe, one person will see. Maybe one person will take this nasty black beast seriously. Perhaps save a life. It takes tremendous courage to push through the hesitation and uncertainty. 

So as I look at the fire, and I think about all the devastation it is causing, I cannot help but see beauty. There is beauty in the devastation. These faces, and these scars are beautiful. They are beautiful because they tell a story. Your story.

So while you are fighting your battle with courage and determination, O mighty Warrior, know that you are the beauty in devastation.

The above pages are part of a multi-pronged effort with Rev Carol Taylor. She has created a website called Faces and Scars of Melanoma. This site is dedicated to honor those battling melanoma, and to remember those no longer with us. It also has a page dedicated to acknowledge efforts being made to raise awareness. Please feel free to join us. No. I encourage you to join us. :)

Love,

Sue

Meandering with Melanoma....

Jillian continues to deal with the effects from the treatment of this disease, Melanoma Cancer.. Most recently, she has been having blurred vision. We think it is related to being in the sun without sunglasses. The drug she is on, Zelboraf, causes extreme sun sensitivity. So not only is it important to wear sun screen, and sunglasses, it is critical. She can be out in the sun for only 3 minutes and blister without protection. As her mother, mama bear, I have to juggle between being concerned and proactive, with being a ‘worry wart’, and hovering. I think, with Jillian’s help, I’ve pretty much mastered it. Finally. One of her eye flashing looks will tell me I’ve crossed the line. One of her grins tells me, I love you anyway mom. J

Recently I finished reading the book, Unbroken , by Laura Hillenbrand. This is a story of a World War II POW. A story of survival, resilience, and redemption. It’s one of those books that stay with you. I’ll find myself thinking about a particular chapter, and I can’t help but compare this man’s story with Jillian, and my fellow Melanoma Cancer warriors, and their stories.

 I stand in awe of the human instinct for survival. I am amazed at what the human body can endure. Oh, you hear the stories, so and so has melanoma and is undergoing chemo. So and so has melanoma and is in the hospital waiting for his T-Cells to grow. So and so just had surgery, so and so completed full brain radiation. Uh huh. You hear those stories, but do you? I think it’s normal to hear them, say a quick prayer, and then look at the “to do” list hanging on the refrigerator.  Do we really know what it means to have melanoma cancer?  These Faces of Melanoma are the hero’s, the true warriors. These faces are going through treatment, while trying to live a normal life. They have families, they go to work. They jog twice a day whether they feel like it or not. They have to remember their medications, have them refilled. They have to schedule time around their Dr. appointments and scans. They have to accommodate their schedules for feeling crappy and fatigued. Something I was reminded of today. These Faces of Melanoma undergo trials. Jillian did last summer. These Faces are at the forefront of new discoveries, and they endure the effects of the treatment, without knowing the outcome. They do it for themselves, and they do it for you.  And yet, through it all, these Faces of Melanoma thrive. They know how precious each day is. Rarely do they take those days for granted. They are loving and compassionate, and they always give of themselves to others in spite of their own challenges.

Last Sunday, I started the day feeling sorry for myself. Jenni moved into an apartment on Friday with friends, getting ready to begin college in the fall. I spent the day Saturday working in my yard. I was just plain weary. And I think my last cub leaving the den hit harder than I thought it would. So, while sitting in church that morning, I almost walked out the door. I could feel the lump forming in my throat, and the tears threatening to fall. But I stayed, and I’m glad I did. I needed to hear the message, because it was intended just for me. :) The pastor reminded me that while things don’t always make sense, He is with us while we meander, and that we pick up people along the way to meander with us. And this is so true for our family.

 The Faces of Melanoma. So happy to meet you, and to share in your journey. You have blessed my life far beyond my imagination. And I promise you. I will walk beside you, and I will fight for you. I will never stop.

Love,

Sue

Love Letters....

I began this post writing about what it means to be a mother. What it means to have such a fierce love for your children that you would literally lay down your life for them.  How a mother is the glue that holds the family together. Those things all hold true for me, but my post just wasn’t clicking. Instead, I want to write what I’ve been thinking about for the last few days, even before I thought about Mother’s Day.

This post is going to be Love Letters. Love Letters to my four children.

Dear Jonathan,

You are 29 years old now. I was 23 years old when you were born. I had no clue what I was doing when you came into the world. But I had Dr. Spock. By the time you reached one year old, that book was torn, tattered, and water stained from reading it over and over again. As a baby and throughout your childhood you were always so happy and full of energy. You still have same energy today, along with your positive attitude. You bring that joy with you wherever you go. Your energy is contagious, and people are drawn to you. You are strong, and you are loyal.   I am proud of the man you have become.

Dear Joshua

You are 26 years old now. I’ve told you this before, but when I was pregnant for you, I was so concerned that I wouldn’t be a good mother to you. I was afraid that I wouldn’t have enough love in my heart to properly give to another child. One child took so much time and energy, I didn’t understand how I could possibly be the mother I wanted to be to you. I need not have worried. From the moment you were born, you had my heart, as well as everyone around you. You were a quiet, gentle child, and so innocent, and loving.  And today, my heart aches with pride as I see you with your own children. You show the same gentleness that you had as a young boy to your own children. You are a wonderful father, and I am so very proud of you.

Dear Jillian,

You are 22 years old now. How excited I was when I had that little girl. I had visions of bows, pink dresses, dolls…all things girly. It took about a minute for you to let me know that you had ideas of your own. The pink ribbons, bows, and dresses were replaced with your brother’s shorts, high top shoes and a ball. Always a ball. We nicknamed you Jumpin Jilly Bean because you were so full of life.  You were a force to be reckoned with, and you still are. You are faced today with the challenge of a life time, and you are showing everyone around you what a hero looks like. I am so very proud of you

Dear Jenni,

My precious bug. You are 19 now. I would have to say you were the happiest of all the kids, and the easiest.  You never complained about anything. You were happy to be home, happy to be traveling to various sporting events. Just happy to be with us.  You were always such a sweet child too. You have grown up to be such an independent and responsible young adult. You have such a good head on your shoulders. I know that whatever life’s challenges may present, you will handle it head on with grace and strength. I am so very proud of you.

There has been no greater gift to me, than that of you,my children. I have been blessed with the opportunity to be a part of your lives. To share in your successes, to share in your failures. To share in your happiness, and in your sadness. And to love unconditionally.

Love,

Mom

"Chancy Pants is Famous" !

It’s quiet now, with only my sweet companion Annie sitting on the chair beside me. As I reflect on the events of the past week, I struggle with the words to accurately describe what I’m feeling on this night.

After my previous post, “Melanoma Cancer Awareness Month”, I have been overwhelmed by the generosity and outpouring of donation's, love, hope, and encouragement toward the billboard project. Not only have we received monetary donations, I received a donation for a billboard. One of my friends, and co-worker‘s husband works for a local billboard company. She contacted the general manager, who happens to be a friend as well, and told him Jillian’s story, and explained what we trying to do for Melanoma Cancer Awareness Month. Within an hour, I received an email asking me what I wanted on the billboard. Today I was informed that the billboard would be up today at various locations across Grand Rapids.

So, this evening, with my parents, kids and grandkids in tow, we took off to see our billboard. I cannot explain what it felt like to be driving along I-96, in a caravan of three vehicles, to look to my left and see my daughters lovely face all lit up for the world to see. My throat tightened, and I felt the familiar sting of tears forming. Jenni was sitting next to me and looked at me like I was a mad woman, so I pulled myself together. Just for her.

We had to drive past the billboard and get off at the next exit and turn back around. My heart was pounding as we approached the area where the billboard is on display. All three vehicles had their flashers on, as we pulled over to the side of the highway and got out with our cameras. I’m sure we turned a few heads as we all posed for pictures beneath our Jillian’s billboard.  Good. Just one more person who may get the message this night.

Jillian’s Journey with Melanoma – A Mother’s Story is not just the story of Jillian, myself, and the rest of our family as we navigate through the maze of Cancer. It is a community’s story. It is a story of love, and hope. It’s a story that can reveal the strength and power of our community coming together as we support one of our own. Like Reverend Carol has told us,we are Angels For Each Other.

In case you are wondering, we have another billboard in the works that should be done tomorrow and up on Monday. This billboard will be the background for a project we are working on as we reveal The Faces of Melanoma. We will not only be heard…we will be seen.

Yes, we will. We WILL!

In gratitude and Peace,

Sue

May is Melanoma Cancer Awareness Month

We just heard from the neurosurgeon at U of M. After reading her scans, it has been determined that the swelling of the ventricles in Jillian's brain doesn't warrant a shunt immediately. We will need to watch for any symptoms...headaches that are stronger than usual, or won't go away with meds. Confusion, fatigue. Anything that seems unusual. We will be scheduling an appointment in three weeks at the same time as her scheduled appointment with Dr. Lao for her follow up and next infusion. We will know at that time if the increased dosage of steroids are working.

 May is Melanoma Cancer Awareness Month 

 Several of Jillian’s supporters on this blog are not on Face book, so I wanted to share with you some things that are going on in the Melanoma Community. Face book for me has become an avenue where I try to raise Melanoma Cancer Awareness. I have a Face book Page set up called Jilly’s Jems. I post educational articles and tips on how to prevent melanoma cancer, and to try and educate our young people about the dangers of tanning beds. I also have a blog where I write about how it it feels as a mother dealing with a child that has cancer.

 My fellow melanoma warriors have been very busy this month trying to raise awareness. There have been interviews with melanoma warriors on national news stations and programs, postings of scars. One beautiful lady I “met” is honoring a different Melanoma Warrior every day of the month. Yesterday she featured Jillian. Jillian has been on blogs, status updates, the list goes on and on. I, myself, was even honored that day by a "mole mate"on his blog, Hotel Melanoma. He titled me “Mama Bear”, which I suppose fits :)

 On our way home from U of M the other night, a couple of things happened. I believe I mentioned before that I feel that God talks to me. While sitting in the front seat of the car, after dropping Jillian and Steve off, I settled in for the hour ride home. Tears were streaming down my face, silent tears. The thought that popped into my head was, “tough as nails”. I saw in my mind’s eye, an image of nails. Not the sort of nails that you buy at the hardware store. The big, thick, nails that look like nickel. I think they were the type of nails my dad used when he was shoeing horses. It wasn’t Jillian that I was thinking of when the nail image popped into my head, it was me. I know I am in a sense, ” tough as nails”, but certainly not on the inside. Anyway, my tears stopped, I collected myself and began to get ticked off. Then I tried to listen to what God was telling me.

 My anger , and my helplessnes of not being able to fix Jillian’s diagnosis, has been the motivation for my non-profit organization, Jilly’s Jems. I needed to do something positive in an otherwise negative situation. Recently I started a group on Face book called, Melanoma Cancer Awareness- Making a difference. We throw out different ideas, vote on them as a group, and then execute them. Last week we had a letter writing campaign going out to several ABC news stations for a story idea relating to melanoma. This week, there have been several ideas posted, but we haven’t voted on any yet.

 One thing that I would really like to do it to have a billboard set up along the highway with the following statement: Melanoma Cancer Awareness Skin Cancer IS Cancer And then have a big black ribbon displayed. Something simple, yet bold. I have contacted a couple of news stations asking them to cover this story, but so far no one has called me back. That is okay though, my son Jonathan has a video recorder on this phone. Then I would like to post the recording on face book and YouTube. This not only helps “Mama Bear” harness some of her anger into something positive, but it helps Jillian to know that so many people are out there supporting her and trying to make a difference by raising awareness.

 My goal with these projects is to have Melanoma Cancer become a household word. I’ve talked with a company that would do this, and the cost would be half price since I am a non-profit, but it is still $1650. The billboard will run for 4 weeks. Since the billboard is digital, it will be moved several times a week which will make the sign more visible. ( Eight locations I believe).

 I am asking if anyone here is interested in donating to this project. No amount is too small, and every dollar you donate is tax deductible. If this is something you are willing to be a part of, please go to the donate button.at the top of the blog. There is an area where you can write a small note referencing “Melanoma Cancer Awareness- Making A Difference”.

 As you drive down US 131 and M6, you will actually be able to “see “your donation , and know that you have been a part of helping to make Melanoma Cancer a household word. Thank you from the bottom of our hearts,Sue, and Jillian ( yes, Jillian read this and approves).