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