"I believe in Miracles"

I have spent many, many evenings in the emergency room these last few years. My dad has congestive heart failure, diabetes, and a whole list of ailments that has landed him there. Tuesday evening, however, the ER was a whole new experience for me.

 Jillian has been experiencing all sorts of new symptoms the last two weeks. They come on slow, they creep up on you when you’re not looking. You look back, and you can see them all, each one flashing a neon warning sign. Tingling and numbness in her left thumb and forefinger. Increased weakness on her left side. Headaches that are relieved with Tylenol, increased headaches that are not. Light headedness, fatigue, occasional vomiting. Dropping things, bumping into things…..each one of these things on their own are creepers…put them all together and they spell trouble.

 Jillian and I arrived at U of M’s ER at 6:00 pm on Tuesday, after a three hour drive. The admission part of our stay went quickly, the rest of the visit dragged on into the night. SO many questions, IV’s, neurological exams, blood work, MRI’s, and waiting for results.

 I am blessed with the ability to work from home. Each time we have a dr. appointment, I take my computer with me and I work. While waiting for Jillian to return from her MRI, I was instant messaging one of my co-workers, Staci. Staci has become a part of our family, and a huge support for me. I’m messaging her, “Its taking so long…she’s been in the imaging room for almost three hours…I know something is going on…..where is my Miracle Stac? “

 It took her quite a while before she responded to me. But then the message box popped up on my screen. I had a clear image of her just then, tears streaming down her face, struggling to say the right thing, the thing I needed to hear.

 "Jillian IS your miracle, Sue".
 "You’re Miracle is Jillian".

 And with those simple words, I was reminded once again that the Miracles in our lives are all around us, every single day. I have too many Miracles to count. My four precious children, Jonathan, Joshua, Jillian, and Jennie. My new daughter in law, Kaytie, my two incredible grandchildren, Spencer and Charlotte, my parents, Jillian's fiance', Steve, Jonathan’s sweet girlfriend Ashley, and my wonderful supportive family and friends.

 As I was driving to my Gilda’s club meeting last night, I had another image. With tears streaming down my own face this time, I was placing one of my Miracles in God’s loving, open arms. Right where I know she will be safe when I’m not with her. Right where she needs to be, all loved up and comforted, and protected while she is away this weekend at the cabin. I know He will watch over her for me.

 Miracles come in all shapes and sizes. Some even have four legs. This holiday weekend, love up on some of yours.

 Peace~

 The photo is a tattoo Jillian’s sister, Jennie, created in her honor:

 “got this for my sister, praying for you every day. God won't put you through anything you can't handle♥”
-jenni

Defining me...

de•fine -transitive verb
 1
 a : to determine or identify the essential qualities or meaning of b : to discover and set forth the meaning of
 c : to create on a computer
 2
 a : to fix or mark the limits of
b : to make distinct, clear, or detailed especially in outline
Characterize, Distinguish <you define yourself by the decisions you make Denison University bulletin>

  I remember thinking, or possibly even saying at one time, Melanoma won’t define who I am. I’ve been thinking about this a lot, and I wonder, how can it not? It is my sleeping partner. It sits with me over coffee in the morning. It goes to work with me each day. It hangs around in the evenings, and it comes along on vacations. 

 Last week was a rough one for me. My dad had been home on Hospice care, and last week Thursday he was admitted to a wonderful hospice care facility. It took some time before I completely got my arms around that transition, but I’ve gotten used to the idea. I’m even okay with it. I have been on vacation this week just trying to recharge my batteries. It wasn't until this evening that I was able to call my parents. I’ve been in healing mode, and I did not want to be thrust back into my reality by talking to them. I told my mom about my lack of communication, but in typical mom fashion, she understands.

We talked about being “burnt out”. I think it has happened to me. I’ve heard the phrase, but I dismissed it, not really understanding what being “burnt out” really means.

 But I can almost guarantee that those that have melanoma, or are caregivers of loved ones with this horrific disease know exactly what I’m talking about. There comes a time when you have to recharge. For a long time, I was able to function on my anger towards this disease. The constant drive to share awareness, get that word out to others…go go go…..Not to mention the true caring and loving that comes from supporting those with the disease. The pain you feel as those you’ve become friends with are struggling with this evil cancer. I know that I’m not doing anyone any good by being “ burnt out”, and staying that way.

 So this week is healing week for me. I’m embracing the wide open spaces that I have always needed to feel complete. I’m praying a lot. I’m shedding some tears. I’m loving my family, and my special sidekick, Annie. And I am trying to close the gap between my fingers as the sand tries to find its way through.

I’m paying close attention.

Peace~

The Piano Man....

So many thoughts have been circling through my mind  the last few weeks. I lay awake at night and wrestle with them all. I try and put it all in a neat little organized package, but that just doesn’t work very well. My thoughts are slippery, and have their own path to follow.

My Dad has been home on Hospice care for the last three and a half weeks. I never had a family member, or even a close friend that had been on Hospice, so I had no idea what that would mean for the family. I went into this transition period with my Dad full speed ahead. He wanted to be home, we’ll get him home. We will make it work. I’ll make it work if it’s the last thing I’ll ever do.HA! I did not take into consideration what this noble, selfless act would do to my Mom. It has taken a toll, to say the least. Every day, Dad has been getting weaker and weaker. The first week my Mom was able to get my Dad up from the bed and to the chair by herself. The second week, there was no way she could do it alone. I have been sleeping at my parents house every night, and spending most of my days there, working from their home along with Jillian. I don’t need to go into the logistics of it all, but it works. Until this past Monday.

After my Dad’s breakfast, the routine has been to get him to his chair with the help of his walker. This day, his legs just wouldn’t work. My mom and I have a little system where I pull him up until he can grab hold of the walker and balances himself before he begins the short trek to the chair. “Ready for your marathon Dad”? He always grins and nods yes to me. I’m holding him with all of my strength, my mom right behind him. He starts to buckle, but I hang on tighter. My back begins to spasm, and sweat is pouring down my neck and back with the strain of his weight. “Stand up Dad, try and stand straight”. And he does. Slowly, we begin our marathon to the chair. I had a vision of Tim Conway in one of the skits he did in the Carol Burnett Show. I started to giggle inside. We were getting nowhere fast. Get it together Sue. Slowly, at an inchworms pace, we got him to the chair. It was at that moment I knew. We couldn’t do it anymore. I couldn’t do it anymore. I think my Mom knew a lot sooner than I did that caring for my Dad alone wasn’t going to work. She has been caring for him for many years. It’s time. Time for someone else to take over the physical care for him, while we enjoy the time we have with him.

Yesterday was a big day for us. We got Dad settled in his new home. It is a beautiful facility surrounded by woods. He can go outside, right off his room on the patio, and enjoy the fresh air again. Hear the birds, feel the warmth of the sun, and smell the rain. As we wheeled him around in his wheelchair, we stopped in a huge lounge area where a piano waits. My sister can play beautifully, and has done so professionally. “Will you play for me Deb”? And she did. I held together pretty well, until he asked her to play one more. With tears streaming down our faces she played as my mom held tightly to her lifelong mate, with me and Jillian crying and hugging, sharing and experiencing this moment of love, hope, peace and faith.

I spent one last night at my parent’s home last night. My Mom and I both grappling with our inner thoughts, talking and crying together. I know she feels relief that my Dad will now be cared for in a way she couldn’t do for him anymore. I’m struggling with my own sense of failure that I couldn’t do more. I know I shouldn’t feel that way. I know this. But I do. I’m stubborn that way.

I’ve been learning so much about life these last few months. I’m experiencing so many miracles every day. My eyes are wide open, and I’m grateful. I’m thankful for all of the people who have been so supportive, and so unselfish with their time, their love, and their support for me, for Jillian, and for my Dad.

I'm planning to listen to many, many more songs, as I continue to learn and experience all there is to hear. 

God Bless

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