I'm Leaving On a Jet Plane...July 19, 2012 (part 1)

"Twelve hours.  It can stretch out forever when you are waiting to hear the results of a biopsy.  It can literally evaporate when it's the last hours spent with a loved one.  Or, it can bring hundreds of people together in the fight against cancer through Relay For Life." - Sheila Blakenship

I woke up and feel much better today. I'm not 100%, but I know that the trip to Nashville will help my spirits and the RFL Leadership Summit is where I am supposed to be. This is a big part of my job and I get to see so many friends, staff, and volunteers from across the country. As I said in my last post, my doctor does not want me to fly. I've struggled with that since the first time I met with her and I have put so much thought into this decision. I do not want to put my health at risk, but I do know that this trip will be a good couple of days for me. This trip will allow me to have a little bit of normal in the middle of this craziness called cancer. If I put my mind to something I can make it happen. I have to decided to go on the trip. It is an hour flight, the airport is small, the hotel is close the the airport, and the people are AMAZING. I need to be there...I belong there! Off the Midway I went. It works out well and I have other ACS people on my flight. Typically, I prefer to travel alone. It just makes things easier, but I was glad to have some friendly faces there. Keri and I met up in the parking deck. We had both gotten stuck in traffic, but we had plenty of time when we arrived at the airport. We headed in together. I was pretty tired when I got out of my car. It made me nervous going because I was already exhausted and we had 16 + hour days ahead of us. I checked my luggage and only had my purse with my iPad in it. I couldn't carry much because I have now had procedures on both sides of my chest. We made it through security and started heading to the gate. Once on the moving walkway I thought I was going to pass out. The fog was setting in and the world was moving around me. I did my best to hold myself together and catch my breath. A couple of the other girls were already at the gate. Marie had a sweet gift for me, a "Keep Calm and Eat Cupcakes" mug. It is adorable and perfect. I grabbed a little something to eat and we waited to board. The fog was continuing to settle in, so I headed to stand in line. I didn't want to the girls to realize that I couldn't focus. I couldn't be a part of their conversations. I was doing all I could to stay standing. Did I make a mistake by deciding to go to Summit?

Once on the flight we had a long wait and now I am getting nervous about the germs. My quick hour flight has just gotten longer. Finally, we arrive in Nashville. I was starting to have a panic attack and I couldn't get off the plane fast enough. Half way up the walkway to the terminal I realized I had left my iPad on the plane. I freaked out and felt terrible. People had gone out of their way to give me an amazing gift and I already left it on the plane. I ran back...I haven't moved that quickly in a month. It is still sitting in my front seat, the flight attendant grabs it for me, and I make eye contact with Keri...CRAP...I'm busted. I feel like the biggest ass for leaving it behind, but I have a huge sigh of relief that I have it back. I told the girls not to tell anyone, but I feel guilty so I'm busting myself out here. Darn Catholic guilt!! It follows me everywhere.

Danielle is waiting in baggage claim when we get there. Danielle and I met years ago when she worked for ACS in IL. She now works for ACS in Florida. Danielle is a great support to me and has been for years. We just have a strong bond, can talk about things, and have a solid friendship. Neither of us are "huggers", but we had a big hug at the airport. It was great to see her and I look forward to spending time together this weekend. Danielle had a ridiculous amount of luggage so that lightened the mood when I was able to tease her. Had she not had that luggage I am sure that I would have cried. I'm exhausted, I'm emotional, and there's a good friend with a big hug...the tears would have been flowing! We then waited for Barb to arrive and grab her luggage. Barb works for ACS and lives in Iowa (Go Hawks!). Barb is also a young breast cancer survivor, so we have a natural bond. Us BC Girls need to stick together! There's a pretty large group of us at this time, so we grab some cabs and head over to the Opryland Hotel. Barb, Danielle, and I were in the same cab with a couple of Barb's co-workers. Barb and I had a chance to talk a little about breast cancer and then she gave me a couple of things to help me with my journey. Barb understands my odd love for sock monkeys, so one of the items is this adorable sock monkey coaster. It matches the sock monkey pillowcase she made me a few months ago. Barb also shares my love for Pinterest and she actually makes some of the crafty items that she pins!

Upon arriving at the hotel I realize that I am in BIG trouble. This place is HUGE...I mean this is the largest hotel/convention center that we have ever been in. My body hurts and now I am going to be walking miles upon miles. This should be interesting. We check in and start heading to drop off our bags and then we need to get lunch. On the way to my room I saw Stephanie from PA and got a big hug. Stephanie is one of the strongest ladies I know and is a huge inspiration to me. Her hug is comforting...not a "oh you're sick hug", but a "hey, great to see you hug!!"  Next stop, Danielle's room to drop off her ridiculous amount of luggage. She had a card and gift for me from a friend of hers that I have never met, her name is Mariagnes. A tube of lip gloss! Perfect..."slap on a little lipstick...you'll be fine! The card made me emotional because it is amazing that someone who I don't know would be so thoughtful. I read it again late that night and cried from her kindness.  Clearly, Danielle is lucky to have great people in her life....not just me!  :)

Now the mile long walk to my room and then back to the lobby for lunch. YIKES...this place is HUGE.

We all had lunch, had some great laughs, got some work done, and then we would head to dinner with our IL staff and volunteers. After lunch I had the opportunity to register and see some dear friends from across the country. Great hugs from great people...hmmmm, maybe hugging isn't as bad as I have thought. I hate that I don't have the energy that I usually have at Summit. I feel like I'm barely going to make it through dinner, but I sat with some great people...Stephanie, Chel, and Chris...then Steve showed up looking like the ultimate tourist with a camera around his neck. Steve just makes me laugh when he walks in a room, so it is good to see him. I ordered something that was too spicy, so Steve was happy to eat most of it. Next stop BED!

Friday started off super early. Days at Summit start at 7 AM and end close to midnight...there's no rest when you're figting cancer. Breakfast gave me the opportunity to see people that I don't get to see regularly and people that I really care about from around the country. I even got a hug from someone who didn't used to care for me...first thought...CRAP...somebody must have said that I am REALLY sick! :) As much as I love seeing everyone, it is so overwhelming to be at Summit and I know that the emotions are only going to get higher because we are heading into the general session room.

Picture if you will, a giant convention center ball room that holds over a 1000 people, the music is thumping, beautiful pictures are scrolling on the two large screens on either side of the stage. People are dancing, pictures are being taken, people are standing on chairs. The energy is as high as I have ever seen it at Summit. Staff and volunteers for the American Cancer Society are in the house and are ready to go with a two day training. I've always considered Summit to be like a giant pep rally for the coming year and this was the biggest that I have seen in my years with ACS. Every year I walk in to the first General Session and I get a little verklempt, but there is nothing that can compare to the emotions that I am feeling this year. I choke back the tears and try to hold myself together...deep breaths...deep breaths...no eye contact...no eye contact. And this genius forgot to bring my tissues...who gets to Summit and forgets her tissues in her hotel room?? Especially the girl who has been crying everyday for the past few weeks.

I could go on and on about all of the people that spoke, the great job that Ron & Brian did, how amazing William (Marty) was on stage, the wonderful job that the production committee did, etc. But, I would like to focus on a few speakers that spoke to my heart and to my journey.

First was Udie. She is a young cancer survivor from Zambia. She talked about her battle with cancer and how lucky she was to be sent by her company to get treatment in another country. Zambia has 14 million people, but they only have one cancer center and a small handful off oncologist...it opened in 2007. I thought about how fortunate we are in the US.  How we do not need to hide in shame because we have cancer. How I can pick any doctor that I want and how I have hundreds of options. If I had a checkbook and extra funds I would have written a check to Udie and the Zambian Cancer Society at that moment. She saw Relay in another country and decided to bring it to Zambia...she dreamed big and made it happen. A collection was taken for Zambia and I made sure that the "spending money" my Mom left on the counter went to Zambia's battle against cancer. Tears ran down my face while she spoke...thank you, Mandie for letting me use a bandana to wipe my tears.

We then headed to breakouts and I had a chance to see some other friends. The next General Session has a survivor and caregiver focus and I have decided that I am not prepared to handle it emotionally. I chatted with a few people in the hallway and then Danielle tried talking me into going to the session. I cried. I was overwhelmed with all the emotions of the day, tired, and sore. I decided to head to my room for a "nap". As I walked and cried I heard a sweet voice asking if she could help. Kari was over my shoulder and there to give a great hug. Kari is like a little sister to me. One of those people that I am proud to know and someone who inspires me greatly. Kari had her own battle with cancer in high school and has taken that challenge in life and done great things. We talked for a few minutes and I cried some more, but she helped me pull myself together. I still decided to head to my room. I walked about half-way there and thought to myself  "I'm stronger than this!  I can handle this!" So, I turned around and headed to the room. I decided that I would stand in the back just in case I needed a quick excite. I found a little corner that could hold me up. A few people tried to get me to take a seat, but I really just need to not speak, not to make eye contact, and just do this on my own. Danielle is texting me to see if I need tissues and then sends Stephanie from FL to deliver them.  Stephanie is so perky and sweet.  I couldn't help but smile.  I had taken a half of roll of toilet paper to use, but the tissues were much better.

The woman that was speaking at the time I came in the room was AnnMarie Morse. Please allow me to tell you about this amazing Mom who opened my eyes to the love of a mother and the battle that my mom endures because I have cancer. AnnMarie Morse is the power behind Michelle's Law. If you have children or if you are a student, you should thank this Mom for making an impact on your life.

This information is taken from the Michelle's Law website... "NH House Bill 37, also known as “Michelle’s Law,” came about when AnnMarie Morse’s daughter Michelle, a full time student at Plymouth State University, was diagnosed with colon cancer.  Knowing the toll chemotherapy treatments would take, Michelle’s doctors strongly recommended that she cut back her college course load. That’s when the Morse family discovered that they were caught in a terrible catch-22.  If Michelle cut back, as her doctors recommended, she would either lose her insurance or would have to pay C.O.B.R.A.  The premiums for C.O.B.R.A. were approximately $550 a month (not including copays), would be more than the family could afford.  As both a parent and a teacher, AnnMarie felt that students like Michelle should be allowed a brief medical leave (up to 12 months) during which they could cut back or leave college to concentrate on their health needs – without jeopardizing the insurance they rely on for their treatments.  With the help of some legislators, and backed by a number of medical and professional organizations, AnnMarie Morse took the issue to the NH legislature.  On June 22, 2006 New Hampshire became the first state to pass Michelle’s Law.  Since then, 10 other states have passed some variation of the law.  On October 8, 2008, President George W. Bush signed H.R. 2851, making Michelle’s Law a federal law effective October 9, 2009. Michelle’s Law Michelle’s Law allows full-time college students to take up to 12 months medical leave. Michelle’s Law applies to students who are covered under their parent’s health insurance plan. “Medical leave” can mean that the student is absent from school or reduces his/her course load to part-time. The date the medical leave begins is determined by a student’s physician. Signed into law on June 22, 2006, the legislation was officially named “Michelle’s Law” and took effect immediately."

Sadly, Michelle lost her battle with cancer on November 10, 2005, but I know that she was in the room today.

Tears ran down my face while listening to Ann Marie. I will never know the pain that a parent feels when their child is ill. The helplessness that must go through them. But I do know the love of parents that would do anything for me. I think God made sure that I was in the room to hear Ann Marie speak. To hear the message of a mom that would move mountains for her child. To hear the pain in her voice as she talked about the beautiful young lady that Michelle was. To see her look to the ceiling while the crowd stood and clapped when she was done speaking. You see, I'm hard on my Mom. I try to be so independent and try to act like I don't need any help. I push her away when I should bring her in close. Ann Marie opened my eyes to a mother's pain when their child faces challenges. I may be 41 years old, but my Mom needs me to need her. I can't promise that I will be perfect, but at the moment that Ann Marie was speaking I heard my inner voice tell me to be gentle with my Mom and let her love me. I also thought that it is ok to let her see me when I am struggling, crying, in pain, or just plain angry with this damn disease....

I found the strength to head to one of our division tables.  I couldn't really make eye contact with our group.  We were all asked to fill out a luminaria bag.  I honored my parents on mine.  Others put my name on their bags, but I just couldn't really look.  I got a lot of photo text to me with luminaria bags with my name on them that day.  Many in the room and several from events across the country.  It was like a giant hug.  Luminaria bags are a symbol at Relay For Life.  Each luminaria represents a person that has been affected by cancer.  It was like I was getting a giant hug of support that day.  When they asked the survivors to stand and hold their luminria bags, I stood there honoring my parents.  I looked forward...no eye contact...deep breaths.  I cried, but I know that I am loved and I know that I will be ok.

I'll finish writing more in my next entry...this one is getting too long and I'm crying thinking about how lucky I am to have the parents that I do. I wouldn't be alive without their love and support. I have never made it easy for them. but they love me nonetheless.

XOXO,

Sue

A poem that is on the Michelle's Law website:

A Mother's love is something that no one can explain, It is made of deep devotion and of sacrifice and pain, It is endless and unselfish and enduring come what may For nothing can destroy it or take that love away . . . It is patient and forgiving when all others are forsaking, And it never fails or falters even though the heart is breaking . . . It believes beyond believing when the world around condemns, And it glows with all the beauty of the rarest, brightest gems . . . It is far beyond defining, it defies all explanation, And it still remains a secret like the mysteries of creation . . . A many splendoured miracle man cannot understand And another wondrous evidence of God's tender guiding hand.

- Helen Steiner Rice

http://www.michelleslaw.com/index.php