The Real Deal..

So. Here we are. It has been three years, and three months since Jillian was first diagnosed with melanoma. Two years since she was diagnosed as Stage IV melanoma. Two years since she had half her liver ripped out of her body. Two years since I’ve slept through the
night without waking up with this heavy ball and chain that follows me through my day. At work, running errands. All. Day. Long. And then at night. Every night. And TWO YEARS that Jillian has undergone numerous treatments, and endured all of it without complaint. I am ashamed at my weakness compared to her.

 For those of you with children, this is your worst nightmare. All the hopes and dreams you have for your child. Shattered. Changed. To see them go through what should be the very best times of their lives….college, moving into an apartment, a new career. Their whole life in front of them with only the sky as their limit. Interrupted. You just can’t sugar coat it.

And yes, I am mama bear. I will do everything in my power to protect my children. Especially if they are injured, as Jillian most defiantly is. If you have issue with it, step aside. This mama bear attitude is what motivates me to fight this beast. To support my daughter. It’s what keeps me going, and helps me to stay focused on raising awareness to this very devastating cancer.

It helps me to see the bigger picture, and to know that I’m not alone in this. Because the blessings continue to be revealed to me. Through my family, my friends. My melanoma community. I know God has a plan. And its big.

I am not happy, but I am motivated.

Peace.

The Promise....

This post was hard for me to write. But I made a promise that I will share this journey with all of you in the hopes that by revealing the story of one family, it may bring hope and peace to those on similar journeys.

 The day was similar to the last few days. I had no way of knowing that on this day, I would see my dad for the last time. I did not realize that I would be holding his hand, stroking his face, telling him that I loved him for one last day.  

I look back on the last few months since Hospice was called in. We brought my dad home from the hospital with the intention of caring for him at home, piece of cake, we could do this.  It didn’t take but four weeks to prove that theory wrong. We then moved him to a beautiful Hospice facility, Trillium Wood’s, where he was very well taken care of. All the while, I’m thinking that I am going to give my dad a beautiful death. I wasn’t sure exactly what that meant, especially since I’d never witnessed someone slowly leaving this world, in preparation for the next.

Dad always had a room full of people. So many friends and family members would stop by and visit with him, visit with us. His family most of all. His wife, his children, and his grandchildren. I can honestly say there was never a day he was without someone in the room with him, loving him up.

As the weeks, and days moved forward, dad got weaker and weaker. He stopped eating as much, he became less responsive, he slept more. But every day, I could always rouse him.  Rarely was he in a deep sleep. He would open his eyes, smile, and squeeze my hand. I told him I loved him, and he would whisper those words back to me.

One afternoon, while family members were at his bedside holding his hand, my mom and I sat on the couch quietly chatting. I looked at my dad, turned to my mom and said ,"There is nothing beautiful about this. Sorry. There just isn't". At least then there wasn’t.

Saturday when I came to see him he was agitated. As I sat on his right side holding his hand, he would grab my other hand and try pull himself up. Surprisingly, when he would do this, he was very strong. The nurse would come in and give him something to relax, but I could tell he was still restless.

Sunday morning I left for church before heading  back to Trillium Woods. On my drive to church, I always pray and ask God to clear my head of all the tangled, muddled thoughts I have swimming around. I pray for Him to open my heart so I can hear what He may be trying to tell me. I don’t always like going to church these days because it’s hard for me to get through the church service without crying. It’s the music that does it for me. I don’t like shaking the person’s hand in front of me, or behind me with tears streaming down my face. I can’t help it. I just leak. 

This Sunday however, the service didn’t have the same effect on me as usual. We had substitute pastor, and it just wasn’t clicking with me. That’s okay though, because it allowed me to be open for other thoughts. My mind is wondering, Bible open to ACTS...and out of the blue comes this thought:

Ask your dad when you see him to watch for Jillian once he gets to Heaven.

Whaaaaa???? Weird, but OK. 

I've been reading a short booklet called Out of My Sight. Its written by a Hospice nurse on the last stages of death, and what to expect. One of the things that is mentioned is each person faces death differently, depending on the person. If they have unfinished business, they fight death. If they have fear, they fight. If they don't want to leave their loved ones or family, they fight it. Bingo. That is my dad. He does not want to leave us.

Once I get to Trillium after church that Sunday, I tell my dad over and over how much I love him, I tell him we will all be ok. I tell him mom will be well taken care of. I told him how on Saturday, my kids came to their house and made sure the pool was taken care before winter. Jonathan looked at their sprinkler system, and how to winterize it. I reassured him that we will handle all of those details for mom. He hears me, and smiles. Then he leans towards me with both hands, takes my hands into his own, and asks me to get the car and take him home. He wants to go home NOW. He has such strength, and is SO frustrated that he can't get out of that bed. I talk with him, and sooth him as best I can. All this time, I'm not leaking, my mom is, but I'm fine.

And then I remember those words spoken to me in church. As I'm sitting on the bed next to him, still holding both his hands, I ask him if he will do me a favor. He looks up at me and nods his head yes. With my voice cracking, tears streaming unchecked down my face, I speak. "Dad, when you get to Heaven, will you wait for Jillian and be there for her when she gets to Heaven too? Will you give her a big hug from her mama? I want to be able to tell her that you and I spoke about it, and that you will be waiting for her". He looks at me. I wasn't sure if I had said the right thing, or if he even understood what I was saying. But then he nodded his head, and said yes.I kissed his forehead and thanked him.

After that, he seemed a lot less agitated. He even fell into a deep sleep. Something that I haven't seen in a while. I wondered if he felt needed, and that he has one last job to do for me. I don’t know.....but I felt good about it.

My dad never really woke up from that deep sleep. While Jillian and I, my mom, and so many other family members and friends visited him that next day, we weren’t sure if he knew we were there. I tend to think he did. And I will always, always remember the last word’s he spoke to me. “I love you”.

Leverne G. Visch, aged 83, went to be with his Lord that night, September 17, 2012, while his grandson Joshua, my son, held his hand. He leaves us with a promise, and a legacy of love.

Now THAT is indeed, a beautiful thing.

Peace~

"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