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.