Wednesday, September 29, 2010

Spending time together and making it count!

After receiving some tongue lashing from friends and loved ones, I am finally getting to sit down and update everyone on how things are going. Today is Patrick's birthday, and we are sitting in the infusion center while Patrick takes treatment. It seems that when I am in medical facilities I write. I suppose it is the lack of distractions. The beeps of IVs and the chatter of nurses is background noise for me now. I suppose it is like having a crying baby. When you don't have kids a child that cries for hours due to cutting teeth is an ear shattering distraction, but to a mom it is part of the normal scenery. Of course you notice it, but it isn't super uncomfortable.

We have spent the last weeks spending as much time together as possible. The days when Patrick feels relatively well, I do everything I can to maximize that time, and when he is having a hard day I do my best to make it as tolerable as possible.

On the 19th of September we went back home to the Lowcountry for an amazing prayer services at Patrick's home church. We got their early and talked with people that were there that we have known for years. Some of the people I didn't know, but they greeted me with hugs and said that they were praying constantly. One of Patrick's best friends Courtney spoke some of the kindest words, and then amazingly Patrick got up and spoke as well. Just the thought of him speaking put a lump in my throat. He was so eloquent and sincere. One of things that he said was that one of his aunts suggested that we attend a service conducted by a very well known evangelist, but he wanted to spend time praying with his church family - the people that knew and loved him. They sat two chairs at the front of the church for Patrick and I to sit in, and the church anointed both of us. One by one our friends, family, and loved ones came up and prayed with and for us. Some prayed silently, some aloud with words of love and support, and others took the opportunity to simply talk to us briefly. It was such an amazing event. We knew we had people thinking and praying for us, but to be sitting in a church full of people who spent their Sunday afternoon with us was overwhelming. There were many tears, hugs, and expressions of love. One of the things said that really struck a chord was something said at the beginning of the service. Courtney commented that the reason for the gathering was so difficult, but it struck him how many smiles and laughs he saw. In spite of the horrible situation people that love each other can still find joy in the togetherness. He said that people that have faith can put their fear and pain aside and stand in faith. Truer words have never been spoken. Love, faith, prayer, and hope keep us going. It keeps me smiling. It keeps joy in my heart in a time that could easily be overwhelmed with sadness.

Barbara (My boss and mentor with the Epilepsy Foundation, and now one of my dearest friends) let us use her beach house on Edisto Island and the last Friday of September we made our trek to the shore. Patrick's parents came with us. We met them on the road, and they followed us to the house. When we got to the island we took our bags inside. The beach house is beautiful. It is seated on the marsh, and it is in walking distance to the ocean. It is so peaceful. In the off season the island is nearly empty and you can enjoy the grander of God's creations. We got settled in, got Cameron in her swimsuit and headed to the shore. The beach was virtually empty as far as you could see. We searched for seashells, and splashed in the water. The surf was calm and there were shrimp boats littered across the horizon. We stayed for about an hour before Patrick started to get tired. We stopped at the Piggly Wiggly on the way back to the house to pick up some dinner. When we got back to the house we knocked off the sand, kicked up our feet and relaxed.

Saturday morning Patrick woke up very under the weather. He was having pretty intense headaches and was extremely tired. We made a pot of coffee, ate a little breakfast and headed to the dock. The dock has an incredible view. It was a perfect day, and we all sat and talked. I decided that I wanted to fish, so I went to the storage room, and pulled out some reels. I found some artificial bait, so I put it on the lines and threw them out with huge hopes of bringing in the big one. After a while with no luck, Mr. Bill made a quick trip to the Pig for some shrimp to use as bait. He came back and reset the lines, and then the bites came. Mr. Bill caught the first fish. It was a croaker about the size of my hand. Amazingly that would be the biggest fish of the day. Cameron was excited to fish until we caught one. She was not at all impressed with the squirmy creature that we pulled from the water. It was so funny. She like to fish, but doesn't like the fish! When I fish with a group of people, my goal is to catch more than the boys, and more we did. I caught 3 or 4 crabs and several fish. The fish were more like big bait, and the crab were big enough to cook, but we threw them back. Cameron absolutely HATED the crabs. She would scream "I don't like it Momma! Get it away!" I had a blast. Well worth the sunburn. Patrick didn't get much better, so our plan to eat out changed to take out on the sunporch. We spent the rest of the night playing Link-n-Logs with Cameron and watching some TV. It wasn't the day we had planned, but it was very enjoyable.

Sunday we got up, and Mr. Bill had prepared a little devotional. It was so sweet and from the heart. He even wanted to sing a song which was so precious. After a very sweet prayer we got dressed and went to the beach. I love my new car because it will hold a TON of stuff, and I loaded it down. Beach chairs, towels, a huge umbrella, kites, a boogie board, a cooler packed with sandwiches, fruit and drinks ...I am sure there was much more. We set up camp and hit the beach. There were hurricanes off shore so the surf was pretty rough. Cameron doesn't like things that are very loud, so she wanted no part of the water. She and Patrick made sandcastles while I rode the boogie board (not very well). Patrick and his dad ran down the beach flying kites. For those hours sickness was as far from my mind as the shrimp boats on the horizon line - I know they were there, but so far away that the details are blurred by distance. We sat under the umbrella while Cameron ate two enormous peaches. We looked out and saw dolphin fins breaking through the service of the water. Then several of the dolphins joyfully jumped out of the water. We were all giddy as little school children. We waited holding our breath to see the next one to jump. They swam down the beach, and as they faded out of sight we decided to pack up and head home. When we got back to the house we cleaned up, washed the bed linens and towels, and hit the road home.

In the following weeks I worked two to three days a week depending on how Patrick was feeling. A few times he called me unexpectedly in pain, and I had to leave the office early. I am so glad that I am in a position where I can get up and go when he calls.

Speaking of pain; that has been a major issue for Patrick. He has gotten to where he can't open his right eye and the headaches have been getting more and more intense. His TMJ has been furiously aggressive and the pain medications that he has been taking didn't give him much relief. We did lots of research and found that Botox has been used for pain management. We talked with Patrick's oncologist here, and he was totally comfortable with him trying it. Finding a doctor that would administer it. When we did we set an appointment, and he was extremely supportive in our attempt to find nontraditional forms of pain management. It didn't take long to get the treatment, and I was really hoping that they might have a little left over so he could give me a little dab or two right between my eyebrows. I have had the same "You have got to be kidding me!" look on my face for the last 17 months. No such luck. It took about a week or so, but it does seem to be helping some.

This past weekend we got a package from Rebecca's former roommate Rachel and her husband Will. Now everyone loves mail that isn't a bill, but a box on your front porch from a friend you haven't seen in a while is super exciting. I grabbed it up and tore into the box nearly as quickly as I tore into the kitchen to put my purse down. In it was a "Family Night" in a box. There was a movie, popcorn, Swedish fish, and a gift card to Papa John's. We spent the rest of the weekend glued to the tube with buttery fingers and bellies full of pizza. We watched Shark Tale, How to Train Your Dragon, Monsters Inc, and a few more (Can you tell that we are fans of Pixar films?) A few weeks before we got a box-o-fun from the Mayor of Funtown (aka Aunt Gwen) that was filled with things like yo-yos, silly putty, and noise makers. Love in the mail makes those that are far away seem closer.

I am sure that there are many things that I have missed, but most of those things are from days that were not so great, so I'll just let them fade into the background. Our life is full of large waves of up and down, but for the sake of brevity I'm going to focus on the good things. We are struggling, and I have had a few crying jags since I last posted, but I am doing my best to spend my energy on reveling in the good times. They are what I want to remember. Those are what are most important. I know that this weekend will be a hard one. Chemo cuts his tail which in turn cuts mine, but we press on because when you are going through Hell, you gotta keep going no matter how hot it gets.

1 comment:

  1. I read a passage in a book recently that said, "Religion is for people who want to go to Heaven, spirituality is for people who have been to hell." I understand the roller coaster you ride; the rising waves of waiting for test results, the feel of the crash when the news isn't what we want; the tides of pain that rush forward and then out again, the "clik-clik-clik" sound of the coaster car as it nears the top of the hill. The rush of relief that the labs came back better this time, the CT shows no further advancement, there's a new study trial starting that looks promising. I admire your honesty. Keep going, the fire is hot, but not unbearable. The impurities will rise to the top, and God will refine what is left.