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.

Friday, September 10, 2010

Rude awakenings

We flew home from Texas on Wednesday. We got up about 4:30am to get to the airport in time enough to return our neon yellow car and get checked in. We flew from Houston to New Orleans, and had a three hour lay over in Louisiana, and then we flew to Charlotte where we would have another three hour layover, and after that on to Florence. By the time we got to Louisiana, Patrick was already feeling worn from the travel. We had made arrangements with my dad to come pick us up from the airport in Florence, but as soon as we landed in New Orleans Patrick asked me to see if we could get someone to pick us up in NC. Becca said she could come get us which shaved three hours off of our trip. We were home before we would have taken off in Charlotte!

As we walked out of the airport I looked around, and as soon as I saw Becca I nearly cried. It was overwhelming to finally see family. I ran to her car, and she gave me a hug that nearly popped my eyes out. We loaded our luggage and hit the road. Becca and I talked and laughed the entire way home while Patrick sat dozing in the back seat. It was so nice to feel the sun on my face and talk about something other than cancer.

We came home to a full house. As soon as I walked in the door I heard Cameron yell "MOMMA!!!" and then she ran around the corner, across the foyer, and jumped into my arms. My exhaustion melted into pure elation. I kissed her little face all over and tickled her until she bubbled with laughter. When Patrick came in he got the same reaction. Becca brought in our luggage, and Cameron didn't go more than 6 inches from my side, and I didn't leave hers. "Momma let's color." "Momma, hold me." "Momma, I love you." "Momma, I missed you." "Momma, let's play." "Momma." "Momma." "Momma." It was wonderful. Patrick stayed up for a while, but after a bit went into the bedroom and laid down. Mr. Luther and Momma made us a wonderful dinner. It wasn't really until then when I realized that I had only eaten a crappy airport cookie and a Coke all day. Our company trickled out, and by dark it was just Patrick, Cameron, both moms, and me. We were home at last.

The next few days the house was full of people - Patrick's family, my family, coworkers of Patrick, and friends of mine. There was very little rest in spite of our exhaustion. It was so nice to see everyone, but it was tiring to have a revolving door of guests.

Rest was something that has eluded me. Patrick wanted Cameron to sleep in the bed with us when we got home. I haven't slept so lightly since Cameron was an infant. Every time Patrick or Cameron rolled over, took a deep breath, or made the slightest sound I was wide awake. Every time I feel asleep I was haunted with horrible nightmares. I woke up in tears three times that Thursday night. The third time I woke up to Cameron saying, "Momma, don't cry? It's alright Momma." This is a time when I should be caring for her and not the other way around. After a few days of that I was dead on my feet. After laying in the bed for nearly three hours on Friday night, I got up and took something to help me sleep. I didn't wake up until a little after noon on Saturday. It was the first real sleep I had had since we got the news. Life made better by pharmaceuticals.

One of the things keeping me up at night was how in the world I was going to be able to continue working. Being a professional fundraiser is an extremely high stress job. The events that I was planning stretch the entire Midlands, and they are all in the fall. Over the next few months I would have to work very long hours and be on the road most days between now and Thanksgiving. The Alzheimer's Association has been amazingly supportive since I started working there in January, but I knew that I wasn't going to be able to give them the time and dedication that is required to be successful. I pride myself in doing things well, and I would rather step down than stay, do a half done job, and let the Association down. I need to be home. After giving it much thought, I made the extremely difficult decision to leave my job. I emailed my boss and her boss and asked them to come to Columbia so I could meet with them. I am sure they knew that it was bad news, but the look on their faces over lunch on Wednesday seemed pretty surprised. I told them how I felt, and that I felt I would be doing the Association a disservice by staying. Once again they were very supportive. There were a number of tears shed, we ate the rest of our lunch, and then went back to the office. I told my co-workers in the Columbia office the following day. Adelle gave me a huge hug, and she cried. I had my emotions in check until she said "You are the best thing that has happened in this office since I have been here." She said it so sweetly, and then I cried with her. Bob gave me a huge hug, and it was so warm and comforting. I know that it was the right thing to do, but that didn't make it any easier.

Patrick decided to return to taking chemo. Hopefully the treatment will slow things down until we can find a more effective treatment. Last time Patrick was on chemo, he didn't miss a beat. He took treatment on one day, had IV fluids on the second day, and had some blood work the following week. Short of the days he was taking treatment or having lab work done, he didn't miss a day of work. He felt bad, but not so bad that he didn't go to work. Unfortunately, he isn't tolerating it this time nearly as well as he did last time. He had his treatment on Wednesday the 8th, and did pretty well Thursday.

Friday I woke up at 5:26am to the sound of Patrick violently heaving. I didn't immediately get up. I was in college before I threw up without my mom there holding my hair back and a cool rag on my forehead. I found that extremely comforting. Patrick isn't a "hold my head" kind of person. I laid in bed thinking I wished there was something I could do. When I heard him heave the second time, got up and packed pillows around the baby so she didn't roll out of the bed, and before I could get my bathrobe on, he heaved a third time. In this pitiful voice I hear "Erin, please come help me." I run into the kitchen with the tie of my satin robe fluttering behind me like the tail of a kite, and there he was huddled over the trashcan in the kitchen. His was as weak as water, and the look in his eyes screamed exhaustion. I got him a cold dish towel and moved him to the couch. I went into the bathroom and dug through the plethora of medications and pulled out everything I could find for nausea. I gave him half of one pill, waited to see if he could keep it down, than I gave him the other half. After about 20 min. I gave him something else. Friday was to be my last day with the Alzheimer's Association, but I told Patrick that if he wanted me to stay that I would. He was already getting drowsy from the meds, so he said that I should go ahead, and that if he started getting sick again that he would call.

My last day at work was very nice. There were tears shed by all. Bob and Adelle took me out to a great lunch, and I loaded my car, turned in my key, got in my little blue car, and hit the road.

Now what? Well I am going to be working part time at Pincus Family law doing drafting, and I am so thankful. They are allowing me to come in when I want to/can, and are going to be super flexible on days that I can't. What a great group of women (and not just because my twin sister is a lawyer there). I'm going to start trying to work around 3 days a week, and see how that goes. Patrick is going to be doing the same chemo that he took before. He will be taking treatment every third week, and in the mean time we are going to search for trials and experimental treatments.

My nightmares seemed to have passed for now, and Patrick seems to be feeling some better. Cameron is her normal wonderful self. She knows Daddy is sick, and I give her jobs as much as I can - taking Patrick a bottle of water, asking him what he would like to eat, and kissing him on the arm (Patrick's head is very sensitive. Cameron knows where his "boo boo" is, but she also knows that his head is tender so she needs to kiss his arm to make his head feel better.)

Even as a kid I wasn't a morning person. I remember sleeping at my Grandmother's house in the spring when the nights were still cold and the mornings brisk. She would bury us in a mountain of hand made quilts, and I remember them being so heavy you felt a little squished underneath their weight. You had to go to the bathroom before you got into bed, because once you were in, you were in until morning. When the morning would break you could hear the birds outside in the cedar tree and the smell of biscuit and bacon permeated the air. I would stick my leg out from under the blanket, and every bone in my body would squeal "NO! NO! Stay in this warm snuggly quilt. You know Grandma will let you!" There are some mornings I wake up and for a moment I forget that Patrick is sick. For a brief moment everything is OK, and the safe heaviness of those quilts holds me snugly into a safe warm place. Then I wake up, and realize that I don't have the luxury of easing out of the bed. The quilt is quickly gone, and then the rude awakenings return. These last few weeks have been filled with rude awakenings - waking to Patrick's prognosis, waking from nightmares that leave me covered in a cold sweat and pouring tears, and waking up to the reality that I was going to have to leave my job. Then once waking up to those things, putting my feet down on the ice cold floor of knowing that our days together may be fewer than we would like. But even after all of that there are bright awakenings too - waking up beside Patrick and Cameron and knowing that I have them both today; waking up to the ping of a text message from a friend that simply says "I love you," and waking up with the knowledge that healing is in store for him whatever the outcome of his illness.

Regardless of whether it is a rude awakening or a glorious one, the end result is the same - we are awake. We are awake to make every moment valuable, memorable, and intentional. Everyone conceptually knows that one day they are going to die, but many people don't have to deal with that reality every day. I hope and pray with every ounce of my being that Patrick proves the doctors all wrong, and that he has a miraculous healing, but I am trying to think of this "time line" that they have given us as a gift. I have a friend who lost her husband very unexpectedly and she had a toddler as well. She had no notice and no time to say the things she said she wishes she could have said. God has given me the gift of knowledge so that I can be sure that nothing is left unsaid, nothing that he is able to do goes undone, and nothing will be taken for granted.

All the time I have is now, and I refuse to let any of it go to waste.