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.

Friday, August 27, 2010

Love remains

Patrick’s eye strain headaches have gotten progressively worse over the last few weeks, so his doctors set him up to have a MRI. He went to his oncologist in Columbia to get the results, and they were very concerned. They saw something behind his eye. Dr. Smith felt that it was likely tumor, but that it could also be scar tissue from his meningitis. He wanted us to go to Houston and have his doctor’s at MD Anderson look at it. We started making the appointments set up, but took us two weeks to get things set up. His head and neck surgeon had been on vacation, and in spite of Patrick sending emails for over a week, they hadn’t gotten him an appointment. I called Patrick at work, and asked if he had heard back about his appointment. Patrick had been super busy at work, and he cut me off pretty abruptly and said “I haven’t heard back, and I don’t have time to deal with it today. I am super swamped here at work.” to which I replied “I’ll handle it.” I looked up the toll-free number for the Head and Neck Center, and hit “0” until I got a human on the phone. The woman that answered said “Let me transfer you to his scheduler.” I stopped her quickly and said “No thank you. My husband has been emailing her for a week, and I am not going to leave her any more messages. Go get her.” I held and held and held, and finally a woman answered the phone. I told her that Patrick needed an appointment for the 26th. She said “Well Dr. Kupferman has been out of town and he doesn’t have anything available that day. The 26th is his first day back in two weeks” to which I replied “Look, we are not coming across town here. We have 1,000 trip, a two year old, and we both work full time. He only has clinic on Thursday, so WORK US IN!” “Well mam, I am sorry.” I lowered my voice and said “If you can’t help me, then put someone on the phone who can. There is reason in all things, and this is crazy.” “Please hold.” I waited some more and the next thing I heard was “How is 11:00?” I smiled with satisfaction of my cross country smack-down. I worked very hard on trying to get a donated plane ticket for Patrick (sadly it didn’t work out), but we got everything lined up for him to come out. I had not planned on coming out with him to start with. I have missed so much work in the short time I have been at my job, and I expected this trip to be a fly in and fly out kind of a thing. I would have never expected what was about to come.

Patrick was to fly out on Tuesday, and as I was helping him get his things together, he said that he really wished I could be there with him. “I don’t know what I am going to do if they give me bad news.” I had this huge wave of “Oh my gosh! I am such a horrible person. How could I even think to not go out there with him? What if he gets bad news?” I asked him if he wanted me to come. “You don’t have a ticket or anything, and you haven’t gotten things arranged to come out.” I said “That isn’t what I asked you. Do you want me to come?” He got a little choked up, and said that he did. On the way to work, I called my mom and asked her if she would drive out to Houston with me. I didn’t even look at plane tickets. She said she would do whatever I needed her to. I got to the office and tore in like a tornado getting things ready to be out for a few days. I got a call from Patrick that he couldn’t get his plane ticket information to print at home, so I printed it and ran home for “lunch.” I told him my plan to drive out there. He said “My appointments start on Thursday. You can’t get out there by then if you drive.” “Oh yea of little faith. It is 18 hours, and that would put me there before your first appointment. It will be hard driving that much in one day, but I’m going to do it.” He gave in. You would think after being together for nearly 10 years he would know better than to think I can be talked out of something. “You said you needed me there, and that is where I will be.”

My step-dad got word that I was going to drive out there, and he called me choking back tears. “Honey, please let me buy you a plane ticket. I will be worried sick if you drive out there, and this is one thing that I can do for you. I want to help, and right now this is the only way I know how. If you really want to drive out there, I’ll support you. I don’t want to make things more stressful, but I would really love to get your ticket. If you want your mom to go out there with you, I’ll buy her one too.” I told him I would rather Mom stay home with Cameron, and I had made that trip before alone. Before I agreed, I looked online and found a reasonably priced ticket, took Mr. Larry up on his offer, and started packing.

The flight to Texas on Wednesday was a all day affair. I had to be at the Florence airport by 4:30am, then 3 hour lay over in Charlotte, and then 2 more in New Orleans not counting air time. I got to the airport, picked up a rental (which is school bus yellow), and drove to the hotel. Patrick was in bed when I got there with a heating pad on his eye. He has headaches non stop, and the warmth seems to help. I crawled into the cloud of a king sized bed and spent most of the rest of the day snoozing. His first appointment was at 7:15am on Thursday, and his last one wasn’t over until nearly midnight (He had an MRI that didn't even start until 10:00). I knew that we were in for a long day.

His blood work started at 7:15. They drew it up, and we went and got coffee. We sat around and waited to meet with Dr. Kim who is a chemo specialist. He said that he would be working with Patrick’s team to decide what the best thing would be “if” what looked abnormal was in fact cancer. It was a pretty uneventful meeting, and we were off to more waiting for his appointment with Dr. Kupferman.

He confirmed my darkest fear. What they saw was indeed tumor, and he didn’t know if it was operable. He said that because of the location, Dr. Levine (Patrick’s neurosurgeon) would be the person who would need to make the real decisions from this point. He did say “Don’t give up hope.” That is not something you want to hear from a world renowned doctor. I ran to the store and grabbed a few things while Patrick rested. We watched a little Law and Order, and napped until we had to head back to the hospital for his MRI. We got done around midnight, came back to the hotel and crashed.

Friday is a day that will live in infamy in my heart. At 8:30 he had his appointment with Dr. Levine. He is a great guy, and he and his wife recently had a baby. He and Patrick are about the same age, and we have both connected well with him. When we sat down in the exam room, Patrick sat in one chair over on one wall, and I sat catty cornered to him. When Dr. Levine came in he said that “I don’t know how to tell you this. Patrick, why don’t you come over here and sit by Erin. This is going to be hard to say, and I think I might cry. You all are my peers, and this breaks my heart.” I got a wash of hot fear over me, and he said, “Your cancer has come back, and it is very aggressive. Let me show you the last few sets of films.” He pulled up the last three MRIs Patrick has had. The post operative scan (which keep in mind was only a few months ago) looked fine. The one he had when he had meningitis had a small shadow, but nothing that just jumped off the page. The scan from about 5 weeks ago showed some brightness behind his eye, but again nothing crazy. Then there was the MRI he had had the night before. There were three distinct masses. One on either side of his brain and one behind his eye. There was also some abnormal blurs in between the two hemispheres of his brain. “Surgically there is nothing that we can do, and chemo is not very effective in this location and with this tumor type. I want you to talk with some other doctors, but I am just so sorry. I don’t know how to say this, but six months from now, nine months from now...I just don’t know.”

My ears started ringing, and my lip began to tremble. The tremble turned into a quake and then an eruption of tears. I feel over onto Patrick’s chest and wept. Dr. Lavine and Roxanne (I don’t know her last name which is a shame. She has been on Patrick’s team since the beginning, but every time I hear her name I just cant help but sing, and her last name gets lost in song) both began to cry, and then there was a deafening silence in the room. “I want you to talk with a few more people, but as hard as this is to say, you will need to try and think practically too. You need to make sure your will is up to date, you know where life insurance policies are ....” I didn’t hear much more after that. All I could hear was my heart pounding in my ears. I just looked down at my hand in Patrick’s and cried. We left the exam room, and I don’t really remember walking to the car. Patrick asked me if I could drive. I pulled it together long enough to get us the 2 miles back to the hotel. We came upstairs and Patrick took some pain meds. I asked him if he needed anything. and he said "No." I quietly said, “I need to get some air. Are you going to be ok here alone.” He assured me he would be, and so I went downstairs by the outdoor pool. There wasn’t anyone there, and part of me was temped to strip down and get in. Part of me felt that the cool blue water might wash away some of the pain in my heart. I resisted the urge, and sat by the pool and wept. Rage, fear, helplessness, and loneliness poured out of my face in huge rivers. My heart was breaking, and it was nearly audible. All I could think of was Cameron. I could see her just as clear as if she was standing right there. I could see her the morning before we left putting a Dora band aid on Patrick’s head and saying “Feel better?” I could hear her “Read Daddy READ!” Patrick is a good man, and a great husband, but Patrick is a wonderful father, and those are so hard to come by.

We are going to be meeting with some other doctors before we come home, and I hope beyond hope that they will give us a plan. We are fighters, and we are willing to do whatever it takes.

When we got back to the hotel we made some very hard phone calls. We would have both much preferred to tell our families this in person, but we don’t know how much longer we will be out here, and we wanted them to be able to start praying. It wasn’t until then that Patrick truly let go. He called his Mom and Dad and all four of us cried. No matter if you are 6 or 36 or 106, you will always be your momma’s baby. Patrick called his brother and a few friends, and I called my family. Everyone said the same thing. “Oh my God honey I am so sorry. I wish there was something I could do.” There is...pray.

I never dreamed that I would be at this place, much less at 28. The place where I am even having to contemplate my husband dying. Being a single mother and widow and not even 30. I feel lost and afraid. I don’t feel hopeless, but I feel completely helpless. Now is the time to hold on to my little family with love and strength. That is what I am going to do.

I read this and it gave me some comfort.

1 Corinthians 13:13 And now these three remain: faith, hope and love, but the greatest of these is love.

As I sit in this hotel room looking at Patrick asleep in the bed, those are the three things that remain. Those are the three things that I am trying to fill myself with. Those are the three things I am and will hold on to for dear life, and no matter what, those three things will remain. I’m holding onto to the faith that miracles happen, and we will pray constantly for one. I am holding on to the hope that next week will bring us a plan that will turn our situation around. And it is true, the greatest of these is love. Love remains. If the worst does come to worse, his love remains. She remains with big girl panties and Dora band aids.

Monday, August 9, 2010

What a wreck

I wish that my lack of writing was due to me spending so much time frolicking through fields of daises surrounded by rainbows and lollipops that sitting down to write would be sacrilegious. Unfortunately my lack of writing is a reminder that free time is something that doesn't exist for me when I'm home. I hope that that doesn't sound like a complaint. I would work 18 hour days for the rest of my life with a skip in my step if that meant staying out of the hospital, but it doesn't leave for very much "me" time.

Our first few weeks home from Houston were extremely regimented. I am so thankful that my mom was able to stay for a while to help me get things lined up. One of my huge worries was Patrick's PICC line. Even more than infection, I was extremely worried that Cameron would pull it out. It was purple and dangly and went from his arm directly into his heart. I mean purple AND dangly? Talk about toddler bait! As soon as we got home, I sat her down and talked with her about what we were going to have to do to take care of Daddy. I was very serious about it, but I didn't raise my voice. "This is Daddy's PICC line, and it is so I can give Daddy his medicine. It is VERY important not to touch it. If you do it could hurt him, so never touch it. Only Momma can touch Daddy's line. Ok?" The response I got was not at all what I expected. She looked at me and started crying hysterically. "Don't cry baby! It's ok! You are going to be my helper. How does that sound?" She stopped crying, and perked up at the idea of being Daddy's nurse. I am so proud of her. She has been such a trooper through this whole process. Patrick wanted Cameron to sleep in the bed with us when we got home. I was not super keen to the idea, but as with many things in our life now, I took his lead. I don't think I have slept so lightly since Cameron was an infant. Every time anyone rolled over, stretched or even drew a deep breath, I woke up and checked to be sure Patrick's line was safe and sound. Once we got home he still had 2 weeks of IV antibiotics as well as an additional 3 weeks of oral antibiotics. My day started at 5:30 to get things lined up for his 6:00 infusion. Then at 6:30 I would unhook him, and at 7:00 he was due his second antibiotic. 6:00am, 7:00am, 2:00pm, 7:00pm, and 10:00pm were his infusion start times. That time line will be stuck in my head forever. On Saturday of the first full week home, I gave him the wrong antibiotic at the wrong time. His home health care nurse said that it wasn't a huge deal, but not something that I should let happen more than once. I'm a list maker, so I took a few dry erase marker and color coded his different meds, and made a timeline of the day on the bathroom mirror. We had a home health care nurse that came out on the weekends to check his line and change his dressing. Even though I had taken all the classes and knew how to care for his PICC it was nice to have a nurse to come in and take a look at it.

They took his line out on July 5th. That morning Patrick suggested that after we left his appointment, we should go to the zoo. I was concerned that he wouldn't be physically able to take a trip to the zoo, but again, I took his lead. While Patrick, Cameron and I sat in the exam room, Patrick said "I don't know if Cameron should be in here for this." Just as soon as he said that Dr. Smith and his PA Nicole came in. They took a look at Patrick's arm. They both said that it looked great, and that taking out the line wouldn't hurt. They snipped out his stitches and pulled out his line like a string. It was pretty shocking how long it was, and Patrick didn't even flinch. Cameron was to busy playing with her purple latex gloves to pay much attention. From Dr. Smith's office we headed off to the zoo. We had a wonderful time. I dropped Patrick off at the door, and I had planned on him getting a wheelchair. I parked and got Cameron out of the car. She put on her monkey backpack/baby leash, and she was ready to see a real live monkey. When we got into the gate, Patrick decided that he wanted to try and walk around for awhile rather than get a wheelchair. We spent the next three hours or so looking at lions, tigers, and bears. They have a great new kangaroo habitat that you can walk through, and the wallabies and kangaroos are within arms reach. We fed the goats (which is my FAVORITE part of the zoo), and Cameron and I both squealed with delight.

The rest of the week was pretty uneventful. Uneventful is my favorite type of week. Then came Saturday. I remember one of my high school teachers saying that 4 day work weeks always seem extra long. I will agree. I had to travel out of town for work, and after being out during Patrick's bout of meningitis, I still had MUCH work to catch up on. In the famous words of my dad, I had been as busy as a one legged man in an @$$ kicking contest. Saturday was a much awaited day for me. I had every intention on sleeping late, making a peach cobbler with the fresh peaches Mr. Luther had gotten us, and laying around like a lizard in the sun. I got up around 10:00 to the sound of Cameron singing "What's gonna work? Teamwork!" I crawl out of bed and head into the living room. Patrick was on the couch working on his computer, and Cameron was glued to the TV singing right along with Lenny, Tuck, and Ming Ming of the Wonder Pets. He had a funny look on his face, and I asked him if he was feeling ok. He said that his ear was ringing. He looked up online that it might be a side effect of his antibiotic, but he still seemed pretty concerned. I asked him what he wanted to do, and he said that he want to just wait and see for a while. I went into the kitchen and started washing and pealing peaches. Patrick had a little vertigo, and was a little queazy. We called Nicole, and she suggested he take an antihistamine because he may have some fluid on his ear. She said if it got worse to call her back. Of course we didn't have any, so I head to Rite Aid for some Claritin. Before I can even check out, Patrick called me and said that his vertigo that was so bad he could hardly stand up, he had gone deaf in his left ear, and started throwing up like crazy. I didn't even check out. I dropped the box on the counter and ran out and to the car. I starting calling my neighbors who I thought could come get Cameron, and couldn't get anyone on the phone. I got my friend Denise on the phone, and the conversation went something like this: *ring ring* "Hello girl" "Denise, how fast can you be at my house?" "Fast enough to pick up my keys. What's wrong?" "I have to take Patrick to the ER, and I need you to get Cam." "I'll be there in 10."

I run around the house like crazy packing up Patrick's meds (always take the bottles to the ER with you. It makes things much easier especially when you are on as many meeds as he is.), getting Cameron dressed, putting a diaper bag together, and getting her car seat out of my car. All the while I am answering the calls of "Momma, whatcha doing?" and "Momma, what's wrong?" and making sure Patrick has something to throw up in. Denise rolled in the driveway and I quickly installed the car seat, made Cameron kiss Patrick bye, and tried to get her excited about spending the day with Emily and Aunt Denise. She seemed very jazzed until she realized that I wasn't going to go with her, and then she cried - a lot. It broke my heart but I knew that she was in good hands.

We got to the ER about noon, and they ran a ton of tests that didn't tell them or us much of anything. The general consensus was that it could be one of a list of about 15 things, and that time would tell. His blood work didn't show any elevation in white blood cell counts. Between that and the fact that he had been on nuclear strength antibiotics for nearly 2 months, they were pretty sure that it wasn't anything bacterial. They gave him steroids and anti-nausea meds. They called in for a neuro consult and got on the phone with MD Anderson. They decided to admit him, and we spent the next week in Palmetto Baptist. Us being in the hospital this close to home was a very strange experience. Cameron stayed with Becca for a few days, and had a slumber party with Grandma Barbara. I was absolutely overwhelmed with guilt everytime I left the hospital. I had to go to work, and I had TV interviews on Tuesday and Wednesday of that week, so I had to spend the night at home. Live TV waits for no man, and there is only so much primping you can do in a hospital bathroom sink. When I came home Monday night the house was so quite. I walked into the kitchen and saw the remnants of my cobbler. The sink still had peach peelings in it, and the knife that I had been cutting with was still sticking out of half a peach, the handle sticky with dried juice. I fed the dogs, and headed to our room. I laid down in the bed and the silence in the house was deafening. It felt like being in church when there is nobody else there. I tossed and turned all night. I was terrified I would oversleep and I felt like I had abandoned Patrick by sleeping at home without him. My interviews went really well both Tuesday and Wednesday. Patrick was making some improvements, but they were slow coming. He was discharged on Friday. His vertigo was tolerable, but not so much better that he could drive. His nausea had passed, but he still couldn't hear out of his left ear. We woke up Saturday, and I made a second attempt at a cobbler. Blueberry this time. I made it with extra love (my mom said that was what made things taste better), and love is delicious! Patrick ate a small plate full, but unfortunately it didn't stay down. He spent most of the weekend on the couch, which was a good place for him. He lined up with a coworker of his to carpool to work.

Things seemed to simmer down over the weekend. The week of the 19th was going to be a very busy week for me at work, and I spent Monday getting things lined up for an event that I was holding in Greenwood that Thursday. Tuesday morning started out wonderfully. Cameron was in rare form. She sang to me all morning, and told me all about what she wanted to to at school. She went on to tell me that birds lived in trees and liked to fly. I asked her what else lived in trees and she busted out with "Pterodactyls do, and they fly too." I laughed until I nearly cried. I mean what 2 year old spends her morning talking about the habitat of prehistoric creatures. I got everything loaded in the car, and she told me that she wanted to drive. I laughed, told her to give me at least 15 more years before she started nagging me for the car keys, and that she needed to buckle up in her car seat. "I don't want to buckle up." I told her she had to because her car seat would keep her safe. I cranked up the car and cranked up some music. Cameron and I sang dinosaur songs all the way to school. Well almost all the way to school.

I was turning left onto Arrowood road right behind Dutch Square mall, less than a mile from Cam's school, and we were hit nearly head on by a Lexus SUV. There is a hill at that light, and long story short the speeding Lexus came tearing over the hill and into our front seat. The impact was so hard that it spun our car several times in the intersection and we need up across the street on the sidewalk pointing the opposite direction of which we had been going. The crash was unbelievable. Cameron was hysterical in the backseat, and I could hear myself saying "Oh my God. Oh my God. Cameron, It's ok honey. We are going to be fine. Oh my God." The windshield was shattered, and my face and chest were on fire. When the car finally came to a stop, I pushed the airbags off of me and slung the drivers door open. It didn't occur to me to look and see where we were or if there was traffic. Well after the fact I had this horrible image of my throwing the car door open, and it getting snatched off by another passing car. Fortunately the sidewalk was where we landed. I had to get Cameron out of the car. I jumped into the backseat, and the look on her little face was heartbreaking. She was full of shear terror. I checked her back and neck before pulling her out of her seat. She grabbed onto me like a little spider monkey. She was crying and I was doing my best to comfort her. I turned around and there was a woman standing there asking me if I was ok. "I don't know." She said "Let me hold your baby." After some coaxing, Cameron went to her, and it wasn't until then I realized that I couldn't stand up straight. I leaned back against my car and just slid down. The car was smoking and some other people who had stopped to help had to pick me up and cary me away from the car. I looked down and saw that my chest was burned from the airbag and there was blood on my dress. Every move hurt, and in spite of my attempts, I couldn't help but cry. Cameron sat beside me and at one point she patted my leg and said "Don't cry Momma. It'll be alright." I called Patrick, my sisters, and one of my coworkers. I am sure that what I said was a huge garbled mess, but next thing I knew my coworker Adelle was there. The EMS team checked Cameron out, and they said that she needed to be checked out at the hospital, but that her grandmother could bring her. We just nodded and went with it because we didn't want to have to deal with the ER showing out because Adelle wasn't family. The slap on a c-spine collar and strap me down to a gurney and whisk me off to the ER.

The person in the SUV and I were on the same ambulance, and I kept saying "I'm so sorry. I didn't see you! I didn't see you!" He seemed very irritated and cold hearted. Maybe it was guilt for plowing his earth destroying tank into our car. Then I said "I don't have time for this!" over and over. I am convinced that the EMT thought that I had a closed head injury. "Ms. Stone you have been in an accident and on the way to the hospital." I shouted, "I KNOW THAT! I don't have time for this. My husband is getting over cancer treatment and I am trying to potty train a two year old!" After that Mr. SUV seemed a little more sympathetic. "It's OK miss. Accidents happen."

I get to the ER and they run lots of tests - X-rays on my feet (the gas and brake pedals beat my feet up big time. A torn tendon in one and a huge hematoma in the other) and hips (my hips got serious rope burns from the seatbelt, and they hurt like crazy), ultrasounded my lungs and abdomen to check for bleeding, blood work, and lots more. I kept asking how Cameron was doing, and the nurses told me that she was fine. We have been working on potty training Cam, and it was only these second day that she has worn her "big girl panties" to school, and she told everyone that came in the room, "I have on my big girl panties." I laughed and thought, both literally and figuratively, yes you do. When I get super stressed, I seem to get pretty funny, and I was giving the doctors a real hard time. I had a student that was in his first year of residency, and his supervising doctor was observing him ultrasound my lungs. Now I was in a hospital gown and my underthings. He took the wand and was rubbing it on my back, and then on the side of my ribcage. He started to lift the side of my bra strap so he could get a shot between my ribs, and I stopped him cold. "Wait just one minute!" He stopped and asked if he was hurting me. "No sir. You best not try and get fresh. I am a married woman!" His supervisor was cracking up, but he has this terrified look in his eyes. I heckled him for a while, and after the fear passed, he had a good sense of humor about it. His supervisor said that if I ever needed to come to the ER to please come to Richland. He said he could use more patients like me. After a while they brought Cameron into my room and she climbed in the bed with me. The doctors gave me some meds for pain, ointment for the burns on my chest and face, and wrapped my feet in ace wraps. Cameron came out with a few bruises, but nothing serious. Thank goodness, because looking at my car, you would be shocked that people came out all in one piece.

Long story shorter (I know what you are thinking, she should have thought about making this long story shorter about a page and a half ago), the car was totaled, and a few says after the wreck I started showing symptoms of a possible rotator cuff injury. Cameron hasn't missed a beat. When we went to get a new car, Cameron told all of the salesmen that we broke our black car. I am excited about my new car, but with new car comes car payment. That was my favorite part of my Civic - the paid off part.

Patrick is having some issues with eyestrain headaches and some vision issues on his right eye. It has been going on for nearly two weeks, and he had an MRI at 6:00am on Saturday morning. I didn't think that he wanted me to go with him until after dinner on Friday. We got up around 5:00 and got Cameron dressed. I packed a diaper bag, and a blanket. We got to the hospital and checked in. Patrick went back and Cameron and I set up shop. I pulled out the blanket I brought, turned on ETV, I went to sleep and Cameron watched some Curious George. After the MRI was over we headed home and I went back to bed.

One thing that I have felt a lot of guilt about recently is letting Cameron watch a lot of TV. The notion of just parking her in front of the tube so I can get a few moments of down time tears me up. I know that a little Elmo never hurt anyone, but I pride myself at making sure that Cameron stays engaged and involved. When she perches in front of the TV I might as well have given her a sedative. She totally checks out, and I think that a herd of elephants could rip through the living room and she wouldn't pay a bit of attention. That is unless they passed between her and Dora, and then she would fuss at them for getting in her line of sight.

Now it is back to waiting on the MRI results.

Thursday, June 24, 2010

An anniversary to remember

We were discharged Wednesday, June 16th. It was an absolutely insane day. I was unaware of the massive logistical challenge Patrick's at home care would be. I have had to take classes on how to care for his PICC line, and then we found out that Patrick was going to go home on IV antibiotics. I had no idea how that was going to work. We were told by our discharge nurse that we were going to have to set up care with a home healthcare service to get us the medications and help administer them. Now he is going to be on these meds for two more weeks. My heart instantly start to race. What is that going to mean for the both of us going back to work. We were assigned a case manager, and she helped us get everything lined up. A little after lunch a nurse from the agency came in and trained me on administering his medications. It isn't terribly hard, but the risk of infection for him makes it so important for things to be done just right. He can't afford to get sick like this again. While Patrick was resting I walked the length of the hospital three or four times running errands. I had to pick up his pill medication at the in house pharmacy, pick up his supplies for his PICC line, get a rental, pick up more supplies, and my cell phone was ringing off the hook with work stuff. One might think I would want to pull my hair out, but I skipped from office to office. We were headed out which meant we were one step closer to home. Patrick got a shower - a real shower and shaved. He had grown a beard and more hair than has in the 9 years we have been together. There were patches here and there on his head and in his beard where his hair has fallen out from chemo, but it still took him a good while to get it all done. He was so weak that I had to drag a chair into the bathroom for him to sit on while he shaved. He put on the clothes that I had picked up for him on one of my two ventures out of the hospital. We called for transportation to come with the wheelchair, and while Patrick waited on them, I went and moved the car. They rolled him out, he got in, and we rolled out!

Of course we hit 5:00 Houston downtown traffic and there was something wrong with the transmission of the rental. When the car was changing gears it jumped like a bunny. Six to eight lanes of traffic packed to the gills. For those of you from Columbia, it would have made malfunction junction look like a dream. It didn't bother me one bit. The sun was shining and we had the radio turned up. By the time we got to Krista's house, my face was sore from smiling. Patrick can't lift anything of substance, so I got him inside and I unloaded the car. Patrick wanted seafood for dinner, so I went to this great place down from the house. They are famous for their crawfish, but Patrick wanted shrimp. I got fried oysters while the getting is good. Thanks to BP, soon it will cost an arm and a leg to enjoy those delectable little creatures with no arms or legs. We tried to sit outside on the deck to eat. We were both well overdue for fresh air and were willing to put up with the 100 degree heat. Our plans were thwarted by the swarm of what appeared to be love children of a helicopter and mosquito. BP should look into drafting them, because they could suck start a leaf blower.

After eating, Patrick and I both crashed on the couch for a little while and watched a little TV. We were both sheer moments from falling asleep, so we called it a night early.

My cell phone alarm went off at midnight to give Patrick his antibiotics. I pulled out all my supplies, gloved up, flushed his line, primed his infusion kit, and hooked him up. I dozed for about an hour and a half until the infusion was done, unhooked him, flushed his line again, went downstairs to get his next does out of the fridge so it could get to room temperature, and went back to sleep until his next dose was due at 6:00. After the 6:00 dose I went back to sleep, and didn't wake up until nearly noon. It was glorious to sleep without the interruptions of beeping monitors, freezing temperatures, and a constant parade of nurses. It was the first true rest I had had in nearly 3 weeks. We got up, got some lunch, and ran a few errands. It wasn't until we were out and about that I realized how much weight Patrick had lost. After going to Walmart for supplies Patrick was given out, and I finished the errands while he waited in the car. Before I was able to get everything done, Patrick was given out, so I dropped him off at the house, and finished up. One of the major needs was a suitcase. As I mentioned, Patrick can't lift anything, and we had two carry on bags worth of medical supplies and them some. I checked around, and got a huge bag from TJ Max that I could have comfortably fit into. It is fire engine red with silver accent. I learned the hard way that every single black suitcase is manufactured at the same location because they all look just alike coming off of an airport carousel. Second order of business was exchanging our rental for something with a working transmission. I was NOT going to get stuck on the side of I-45 and watch my ride home fly overhead on Saturday. The folks at Enterprise were very nice, and the gentleman there seemed very impressed with my car knowledge skills. "It's a great car, but when it is changing from 1st to 2nd and especially 2nd to 3rd is seems to get hung up. It also is revving in 4th." I didn't think that was anything amazing, but I suppose many women that have issues just throw them the keys and say "It's broken. Give me a red one. It will match my purse." They told me that they had a little Vibe and then a Jeep Cherokee. Seeing that I drive a little black Civic matchbox, you couldn't pay me to drive anything as big as a Jeep in Houston, so Vibe it was. It was the super basic with manual everything except transmission. He apologized for having to downgrade me to a car that wasn't as fancy. "Will it leave me on the side of the road? No? Then it is my favorite. I think I can swing rolling down my own window." "Mrs. Stone, it will be ready in the morning at 8:00."

Patrick's PICC line has two ports in it, and it is very important to not stress the line or put to much pressure in it. A slow port can mean a damaged line, or clot, and pushing to hard on a flush could damage the catheter or move a clot with possible terrible consequences. The port wasn't totally blocked, but I went ahead and called to infusion center at MD Anderson and set an appointment for them to take a look at it on Friday. When I got home from all of my running around, Patrick was sound asleep, so I worked on some work stuff, organized the mountain of paperwork for his infusion care, paid a few bills online, and checked my email. When Patrick got up, he took me to a great hibachi place for dinner. It was a wonderful date to celebrate his recovery. Nothing like a onion spewing fire like a volcano and a chef juggling meat like a clown at the fair to celebrate.

Friday morning I did Patrick's infusion, jumped in the shower, ran got the car, and came home to pick up Patrick and it was off to MD Anderson. We both looked at our watches, realized that we were running behind and began hurrying to get out of the door so we wouldn't miss his appointment. We jump in the car, and we realized that our watches are still on South Carolina time, so we were an hour earlier than we thought. We both chuckled, and decided to go ahead out there. There is a great coffee shop in the main lobby, and a Mayan Mocha sounded perfect. As we drank our coffee we both made a few phone calls to update people on our weekend plans. The IV team got him all fixed up, and then we headed back to the house. I knew I had spent to much time here when I realized that I didn't need to Google Map my trips back and forth from Krista's to the hospital. Her house is in North Houston, and MD Anderson is downtown, so it is a bit of a drive - a drive that has become to familiar. We picked up some lunch, and on the way back, Patrick talked about going to a matinee movie later in the day. We came in and Patrick went upstairs to rest, and I pulled up the movie times, but I wasn't about to wake him up for a $3 discount on a movie. By the time he woke up, Krista had gotten home from work. The two of us sat around and talked for a while. She had some church obligations, and had been incredibly busy, and it was so nice to get to just sit around and shoot the breeze. Patrick nor I was super thrilled about the movie choices, so we decided to just hang out around the house and watch a movie on my laptop. We ate our leftover Japanese for dinner, and then headed to our room. We talked for a little while about the last three weeks and how insane this has been. We decided on watching the movie "Fireproof," and after it was over I just started to cry and cry.

Up until then I had cried some. I cried when I first saw Patrick filled with tubes. I cried when he was behaving like he had a stroke and the doctors told me that he may or may not get any better than what he was right then. I cried was able to move his left hand, and I cried when he told me "I love you." after days of not being able to speak, but I knew that these tears were on the surface. I had not had the energy or luxury of letting my true emotions loose. Then I wept. The tears came in powerful waves, and I could hardly catch my breath between them. I felt like I did when I was knocked down by a huge wave at Pawleys Island when I was a kid. The undertow was so strong that as soon as I felt like I was going to get back on my feet, the salty water would suck me down again. I vividly remember the sheer terror I felt as the sandy water got in my mouth. That is how these tears came. As soon as I thought they were over, I would once again get snatched under the waves. I wept for nearly a hour. All of the fear, exhaustion, sadness, and hopelessness poured like a heavy rain. We talked most of the night, and I filled Patrick in on some of the difficult realities of his situation. There are some things you can't tell someone until it is over. Things like the doctor telling me that if I had any legal paperwork that might be important to bring it; like the neurologists saying that he might never be able to use his left side or talk again; like when I had to wake him up to remind him to breath; like when I was afraid that I wasn't going to make it to Houston "in time." Things like that. We both cried. There were tears of sadness and of joy. We went to bed with the knowledge that Saturday would bring us home.

Saturday, June 19th was our 6 year wedding anniversary. Patrick woke me up when he got up to go to the bathroom right before his infusion. I pretended to be asleep until the door shut, and then I leapt out of the bed like a gazelle, pulled out a card I had picked up for him when I was out getting things for our trip home, put it and a piece of chocolate on his pillow, and played possum. The card talked about a husband kissing his wife every morning, and it made me cry right there in the isle of Wal-Mart. For the last 6 years I have woken up to a kiss on the forehead and "I'm gone. I love you." That kiss and those words I had longed to hear for weeks. When he came back into the room I heard him say "Aww." I opened my eyes and told him happy anniversary. He said "I didn't get you anything." Before he could say another word I told him, "Patrick, you have given me exactly what I wanted for our anniversary. By dinner time we will be home, and that is the best gift you could ever give me. This is the best gift I have ever gotten. You, healthy and on a plane home." He read the card, and leaned over with a kiss. After that, I got up and gave him his infusion, jumped into my clothes, and we said our goodbyes to our Houston family. We got our enormous red suitcase into the car, loaded our carry ons, and hit the road. I was grinning from ear to ear.

We were told by Coram Infusion Services to be at the airport about two hours before our flight because we had liquid medications. They had given us lots of documentation to prove that what we had actually were medically necessary liquids. The woman that I spoke with told me this horror story about a little old lady that was not allowed on the plane because someone at the TSA thought that her medications might be a bomb. Keep in mind this little lady was in her late 70's, about 95 lbs, and pushing a walker. We checked in, and the attendant behind the desk asked me if my bag weighed more than 50 lbs. I told him that I had no idea, all the while thinking I felt like I was pulling a case full of bricks. Because of Patrick's spinal fluid issue, he couldn't pick up anything. I was dragging our suitcase that I could have ridden in, two carry on bags, and my backpack. They weighed the bag, and it was 54 lbs. He told me that it would cost an additional $50 to check our bag. We opened our suitcase up, and pulled out 5 lbs of stuff. A few pair of jeans, shoes, and some medical supplies put us at 49.5 lbs, and $50 in the black. After printing our tickets, we headed off to security. I just knew that I was going to end up getting a cavity search from some woman named Gladys and get put on a terrorist watch list. I try my best to hurry and get my shoes off, unload my laptop, and take my phone out of my pocket. I hate airport security. I always feel like the people behind me are irritated that I am not moving fast enough. They probably feel the same way about the people behind them. When I got to the security desk, I told the guy at the x-ray machine that I had medications in my bag, and as I began to pull out the paperwork, he just shooed me on through the metal detector. I must not look like a Homeland Security risk.

Once we cleared security, we headed off to our terminal. We hadn't had anything to eat, so we stopped for a doughnut. After an overpriced yet delicious blueberry filled mouthful of joy, we made our way to the terminal and had a seat. We had a good hour layover in each of our stops. We sat and waited, and waited, and waited. We were delayed 47 minutes. Every 10 minutes or so we would hear, "For those of you waiting for Continental flight 1562, we are still waiting our your plane to arrive. Once it lands, it will be cleaned, and re-catered and then you should be on your way." Re-Catered? Really? We were flying from Houston to New Orleans. It is a 1 hour flight. How much soda could one plane need? I just knew in my heart that we were not going to make our connector to Charlotte. We landed in New Orleans 15 minutes before our flight to Charlotte was to take off. Much like when Patrick's parents and I flew out to Houston, I took off in hopes of catching the plane. I ran to the closest TV monitor to see what terminal our plane was, and they only had the flights for Continental (and our second flight was with US Airways). I had to stop and ask someone, who had to call on her radio. She gave me the terminal information, and I take off only to find that in order to change from one terminal to another in New Orleans you have to go through security again. At the sight of the x-ray machine, I knew that all hope was lost. Because I had to ask about our flight information, Patrick had caught up with me. "How have you only gotten this far?" Holding back tears I tell him, and we rush to the terminal. We get to the counter, and there was this very friendly man who knew exactly who we were. "Are you Mr. and Mrs. Stone? I am so sorry, but the plane is gone." I start to cry, and step to the bathroom. I called my mom, and the conversation went something like this: "MOMMA!! (crying crying) I can't believe it. We missed our stupid plane. (crying crying) We have got to get home. I can't believe this. All I want to do is come home! (crying crying) I gotta go. I love you (crying crying). *click. I wash my face, and head back to the counter. Keep in mind that Patrick is wearing a mask, and is noticeably weak. I pour my heart out to this enormous man. He clicks away on his computer with a very sweet look on his face. I knew that look. It was the same look that I had gotten on the way in. "I am so sorry Mrs. Stone, but there are not more flights to Florence until tomorrow. Is there any other airport close by?" It didn't occur to me to say Columbia. Flying out of Columbia always costs an arm and a leg, so it isn't really in my airport brain even though my house is less than 5 miles from the end of the runway. "If you can get me to Charlotte, I can get somebody to come get me. It is only a few hours." "There isn't anything closer?" Patrick chimes in with a very uncertain tone in his voice. "Well, Columbia." There was more clicking, and the words that quickly turned my frown upside down, "Sure. We have two seats to Columbia. The flight will land about 7:00 this evening." My heart let! Patrick went and sat down while we got the details straight. He asked about Patrick. "If you don't mind me asking, is your husband ok?" I commence to tell this perfect stranger the Reader's Digest version of the last year. He listened with a shocked look on his face, and said that he would be sure to keep us in his prayers. I call Momma back and fill her in on the updated flight information. I think she was relieved more by the fact that I wasn't hysterical than the fact that I was on the way home.

We make it to Charlotte without a hitch. I called my friend Denise and asked her to pick me up from the airport. She and I sing together at church, and she is a jewel. She lost a brother to cancer, and we have become very close since Patrick was diagnosed. She said she would be there with bells on. As soon as the wheels of the plane touch South Carolina soil, I called her again, we deboarded, and rushed to the baggage claim. By this point in the day, Patrick was totally exhausted. I was wearing my backpack on my back, his backpack on my chest, and I was pulling both of our carry on bags behind me. I got a number of funny looks, but they were not heavy at all. It must have been like when someone single handedly picks a car up off of a child. never in normal circumstances would it be possible, but I was walking on air. When I got to baggage claim, I told Patrick I would be right back. I stepped outside to she Denise with a huge smile on her face. She and I ran to each other and gave each other a huge hug. I managed to fight back tears, and she took my bags. I went inside and told Patrick to go ahead outside and get in the car, and I would get the bag. It never fails that my suitcase is the very last one to come down the conveyer belt, but that fire engine red bag was the first one to spill out. I snatch it up, and jump into the car.

I couldn't get out of the car fast enough when we got home. I run to the door, to find it locked. I rang the doorbell, and I hear the dogs freaking out. Cameron saw me through the window, and her face filled with pure joy (as did mine). "MOMMA!!!!" she squealed with delight. Momma opened the door, and Cameron leapt into my arms. "Cameron! I missed you so much! I am so glad to be home!" In the most precious little voice she said, "Momma, I love you," and she threw her arms around my neck and squeezed tightly. I had been waiting for three weeks for that. I kissed her all over her little face, and she erupted with laughter. I put her down on the ground, and Patrick was greeted with just as much enthusiasm. We were home. I had gotten my anniversary gift.

Over the course of this trip I realized that it has been nearly one year to the day from Patrick's first surgery and his brush with death. This journey started the Friday before Memorial Day of 2009 with a surgery we thought was to remove a large sinus polyp. The Tuesday following that, we got the call that it was cancer. Three surgeries, three months of radiation, and a round of chemo later; I found myself sitting beside Patrick's bedside on Tuesday crying , and afraid that he wouldn't make it through the night. One year to the day. I can hardly believe it has only been a year. Our family has been through more in a year than many people will face in a lifetime. Through prayer, faith, love, support, and shear determination we have pressed on. I have an entirely new appreciation for my family. Everyone knows that at some point you are going to die, and that it could be tomorrow. For most people, especially my age, this notion is tucked away. I had to look that hard reality square in the eyes as I held Patrick's hand as a machine did his breathing for him. I had to try and wrap my brain around the fact that he may never walk or talk again, and I was always thinking of Cameron, and what this all would mean for her. I can assure you that I have an entirely new appreciation for those that I love, and I will never take another moment together for granted. These last few weeks have been a complete nightmare, but by the grace of God we woke up from that nightmare and are facing a new day.

Tuesday, June 15, 2010

A very quick update....more to come later today

Hey everyone,

Let me start out by saying thank you so much for your prayers. To say the least this has been a crazy couple of weeks. Patrick is doing much MUCH better, and if things go as planned (knock on wood), we will get discharged tomorrow. It looks like his leak was repaired by the lumbar drain alone. Patrick has really been through it. One of his many doctors came in this morning during rounds, and she cut up with us for a while. After cracking a few jokes, she said with all seriousness "You are one lucky man. We almost lost you Tuesday night." One of his doctors in the critical care unit said that he had never seen anybody so close to death turn around so quickly. There is still some debate on the spinal fluid leak, but most of the doctors think that Patrick's meningitis was so bad and his brain swelling was so much that it tore a hole in the dura (the exterior lining of the brain) allowing the fluid to leak out. All the doctors agree that he was so lucky that he went to the ER when he did and that he was in here. I know without a doubt that if he had been in Columbia, Patrick would have died. Because of all of his treatment (three surgeries, radiation, and chemo), he is a very unique case. They have countless pages of medical records here, and were right on top of it. As soon as we get our walking papers, I'll be online getting a plane ticket. Our 6 year wedding anniversary is this Saturday, and I told Patrick the perfect gift will be him better and us on a plane home! This time 6 years ago I was picking out flowers and making final adjustments to my wedding gown. Who would have ever thought that just a few years later this is where our path would lead. It really makes you appreciate the big and the little things.

Again thank you all for your thoughts and prayers. It has helped us make it through. We look forward to being back.

Erin Stone

Wednesday, June 9, 2010

Was that the sound of chickens hatching?

I am writing this while sitting in the basement of the hospital washing clothes. The fact that we have been here long enough that I have to wash clothes says a lot. I had a flash back to my senior year of college when I realized that I had run out of clean underwear, and instead of washing clothes I just went and bought new ones. Yep, did that. I was planning on going to Krista's so I wouldn't have to buy more socks, but I found that they had washers and dryers downstairs. The smell of Tide is permeating the hallway, and the click-clack sound of someone's buttons in the dryer is the only thing I have heard in about an hour. I suppose a little change in scenery is good.

Patrick had a great Monday. He was up and walking around, and all of the doctors were pleased with his progress. Two doctors said that they would discharge him on Wednesday. My heart was filled with glee. I started pricing plane tickets home, and I even got Krista to come get me so I could buy Patrick a comfortable change of clothes to wear home. He will come home on IV antibiotics so they will leave his PICC line in his arm. I wanted to be sure that he was super comfortable on the plane, so I got him a great pair of athletic pants, and green shirt, and some comfy flip flops. I called Momma to double check his shoe size so that there would be no problems getting him out as soon as they gave us the word. Krista's mom, Donna, came and picked me up after she got off work. (She works very near to the hospital), and we went to their house where dinner was waiting. Roast, rice and gravy, squash, and sweet tea. Krista and I sat on the counters in the kitchen and talked while the squash was finishing up, and I felt closer and closer to home. After dinner, we went to Target, and then to Rayo's. Rayo's is an amazing bakery near their house, and Patrick must have gone there three times a week when he was out here. I got him some great little treats. A creme brule, a fresh fruit tart, and the sweetest little cake I have ever seen. It was mint chocolate, but it was shaped like a woman's summer hat. It was so neat, and Patrick said it tasted wonderful. I laid down in the horribly uncomfortable recliner, and I went to sleep knowing that tomorrow would be the last day before we were out of there.

I should know better than to count my chickens….

Tuesday morning Patrick told his doctors that his nose had been dripping. At first he thought it might have been sinus drainage, but it seemed pretty regular when he would stand up and walk. His nurse called his neurosurgeon who came by. He had Patrick stand up and bear down, and sure enough he started leaking. That dripping wasn't from his sinus, but rather from his brain. He somehow has sprung a spinal fluid leak, which is pretty serious business. Dr. Levine decided to put in a lumbar drain to take some of the fluid out of his spinal column so that hopefully the tear (wherever it is) will heal on it's own. If not (and I am knocking on wood this isn't the case), he will have to go back into the OR where they will have to find the leak and patch it. When I asked if that was something that they could do endoscopicly, the doctor said that would be hard to determine, but more than likely not. The thought of more surgery makes my heart sink. He has had enough surgery for two lifetimes. Pray that doesn't happen.

After they made the discovery, they decided to move him to the 8th floor, which is the neuro-unit. We had to pack up and move again. Down stairs - the wrong direction. We got there and got halfway settled when one of the neurosurgeons came by to put in the drain. He was a soft-spoken korean man in his late 30's. He and Patrick's night nurse Greg, prepped Patrick, and got all of the supplies out. The procedure involves putting an enormous needle in-between two vertebrae in his lower back, inserting a catheter, and attaching a collection bag to drain off 10 ccs of fluid per hour. I had lots of questions about how much fluid that was in relationship to the grand total, and how long it took for the body to replace it. He said that 10 ccs an hour is just a little more than the body produces, so the goal is to take just a little bit of fluid off to make room for the leak to heal. He will have to lay flat of his back for 5 days, and then they will remove the catheter, and keep him down for 24 more hours. After that they will sit him up and see if he is still leaking. If not, we will come home, if so, more surgery. Putting the needle in was extremely painful, for Patrick and me. They numbed the area with some lidocaine, but the deep tissue and ligaments can't be numbed because they are so deep. I held Patrick's hand, and I could tell the exact moment they hit the tissue. He nearly came off the bed. The doctor told him that it was very important to lay still, and that he knew it was very uncomfortable. "Uncomfortable" is doctor's speak for as painful as getting hot bamboo shoots shoved under your fingernails. He gave Patrick a little more lidocaine, and tried again. They had draped Patrick as though he was in surgery, and the mirror was behind him, so I could see most of everything. Patrick pulled his knees to his chest, and they started again. I told him to squeeze my hand just as tight as he needed to, that I was there for him, and he could do it. With every movement of the needle, Patrick squeezed harder and harder. I put my head down on his arm and kissed it gently. "You are doing great, and it will be over in just a little while. Think about Cameron and her singing her ABCs." Patrick closed his eyes, and squeezed harder then a few tears rolled down his face. By the time it was over my hand was nearly broken, and that' was ok with me. They threaded the catheter, and now there is nothing to do but wait. I tried to get a little work done, but with him on his back, that is going to be harder than ever. He can't sit up more than 15°s, so I am going to be waiting on him hand and foot. Good think he has pretty feet. :)

We are both ready to come home.

Monday, June 7, 2010

Eat what you can

With the weekend came more strides in the right direction. Patrick and I both seemed to get some real sleep Friday night. He was feeling better, his tests proved that he was getting better, and it put a smile on everyone's faces. Patrick ate a little breakfast, and then his respiratory therapist came in and gave him a breathing treatment. Those cause him to cough, and that is just what we want. After doing some of his breathing therapy, he got out of the bed and we walked around the nurse's station twice. All of the nurses commented on how happy they were to see him up and around. The staff here is so wonderful, and so encouraging. Krista came by for a while after lunch. She caught us up on what was going on with her, and she had us all cracking up with funny stories about life in the Lone Star state. It was so nice to see her. One of the hardest things about being out here is that our family is so far away. (1,047 miles to be exact) I can't tell you how many times I have wished that Becca was here bringing Cameron to check on us. How nice it would be to see Amie, Leigh Ann, and Momma cutting jokes about some of the crazy things that ended up putting me in the ER. Mr. Larry giving us a quick hello on the way to cut our grass. (Cutting grass is what he does. He IS the Yard Man.) Seeing some of my loved ones from church swinging by for a little break in the day. Having Patrick's parents here has been such a blessing. They make home feel a little less far away.

Patrick didn't eat much dinner, but he has been good about drinking lots of water. I asked Patrick if he needed anything, but he assured me he didn't, and went back to pushing his food around on his plate. He finally gave up on what he had ordered, and asked me to get him some cereal. I could hear my grandmother's voice come out of my mouth. "It's so good to see you eating. Can I get you anything else. It's ok, eat what you can and leave the rest." I called down to the kitchen for some Fruit Loops, and he did eat that.

They took him off of his IV fluids, and they only hook him up while he is having his infusions of antibiotics. The doctor came by and told us that Patrick's white blood count was going up so they were going to take him off of any steroids, which can boost your white count. The doctor said that he was a little concerned, but hopefully this would clear the issue.

The team of nurses that he had Saturday night was the same team that had to call the code on Patrick on Monday. After he left the ER, he was moved to the floor, and no sooner had he gotten here, he deteriorated and had to be put on a ventilator. One if his nurses told us more details of the night. I don't really think it was until that conversation that Patrick really realized how close he came to dying. After she left we talked about the days he doesn't remember, and he seemed even more shaken. As we settled in for the night, he said "Why don't you pull your chair over here by me." I moved the table that sat between Patrick's hospital bed and the recliner that I've been sleeping on. I put down the rails on his bed, laid down across the armrest, put my head beside him and started to doze. He took me by the hand, told me he loved me, and we went to sleep. As I laid there I realized that is the first time in quite the while that we haven't had Cameron between us. I miss that little sassy girl.

Patrick coughed off and on all night. Earth quaking coughs that any other time would make me feel bad, but those deep dark sounds were music to my ears. Those coughs were breaking up the pneumonia and subsequently breaking up this disaster. I stroked his horribly bruised arm while he caught his breath, and then it was back to sleep until the next quake.

Sunday morning Patrick woke up feeling worse. He said that his neck hurt and he was having a little trouble breathing. My heart sank. Neck pain is what started this. That coupled with the fact that his white count was going up had me in a little bit of a panic. I got up, felt his brow to see if he was running a fever, and got him a glass of water. They draw his blood for work up every morning around 5:00, so I was waiting quite impatiently to hear what his counts were. The nurses called the doctor on call, and they gave him a dose of morphine to stave off the pain in his neck. I thought we were past the point of morphine. When we got the word that his counts had gone from 22 to 16 I was able to take the first deep breath I had in several hours. The neck pain wasn't from infection, but rather it was from coughing. I hate that he was hurting, but three cheers for cough related neck pain. Patrick's parents spent the morning with us. Patrick's nurse Madlyn came in to take his blood sugar. Madlyn is probably in her 50s, and she is about as big around as she is tall. Her coffee skin highlights her bright smiling eyes. I remember her from the last two times we have been her, but I don't think she really remembers us. "Alright honey, I need to get your sugar." she said with a Southern draw. Patrick said, "Well come on in and pucker up." I nearly shot orange Fanta out of my nose. She laughed and fired back with a joke of her own. About 11:00, she came in and asked Mr. Bill, Mrs. Noonie, and I to leave because she needed to give Patrick a bath. He gave her a big grin and said "Come on in!" I told him to be sure to keep his sugar to himself, and I laughed the whole way to the coffee shop downstairs. Mr. Bill and I had white mochas, and Mrs. Noonie had a caramel coffee. We talked about how amazed we were with how wonderful Patrick was doing. I thanked them for coming out with me. The three of us basked in the prayers that have been answered in our family. We finished our coffee and went back upstairs to tease Patrick about cheating on me with an older woman.

They left to head to the airport a little after 1:00. I hugged them both so tightly, kissed them on the cheek, and promised that I would bring their baby home safe and healthy. No matter if you are 6 or 36 or 106; you are alway your parents' baby. We all held hands and prayed. Love, joy, and relief filled the room until it was tangible. It was like a warm blanket that I was more than happy to wrap up into. We all got a little misty eyed, hugged each other again, and then they hit the road. I am insanely envious. How much I wish we were going to be on that plane home. Home is where the heart is, and mine more than likely has one arm around her glow worm right now.

Mid-afternoon Patrick was feeling better, so he got up and we went for a few more laps around the nurses' desk. When we got back to the room, Patrick asked if I would go get a wheelchair so we could go downstairs. I tracked one down in the lobby, and took his chariot upstairs. We got a quick cheer from one of the nurses as we made our way down the hall. We went to the first floor to the main lobby and outside to get some fresh air. As I pushed him past a small rose garden I realized that this was the first time I have been out of the building since I got here. It was so hot outside, and the air was heavy with moisture. In spite of the oppressive heat, it was nice to feel the sun.

We walked into the far entrance into the lobby called "The Fountain." It is a very open space with lots of windows, a grand piano that always has a player, and a beautiful fountain. We sat down and watched the water fall for a while listening to the rich sounds of the massive Stienway being played by a young doctor with raven black hair. She played with such longing that it just pulled me in. As we sat, a family walked by. The mother talked to her daughter who was about 6 years old, and pushed a stroller with a pudgy faced little girl inside. She looked a little younger than Cameron. She had on a cute little pink hat, footie pajamas and a little jacket. She had a tube going up her nose and IVs running into a port under her PJs. She and her sister were begging their daddy for change to toss into the fountain. Her dad pushed an IV stand and dug into his pockets much to slowly to suite the two little girls. You could see the little girl's bald head peeking out from underneath her little plaid hat as she pulled against the seatbelt in her stroller. Her little round face filled with shear elation when her penny broke the surface of the water. Her sister cheered her on, and stuck her hand back to her dad for more change. Patrick squeezed my hand tightly and I started to brim with tears. With every cent they gleefully threw in, I made wishes. I wished that this was all a horrible dream for them. That they wake up tomorrow and their little girl was as healthy as she was happy. I wished we were home so I could kiss Cameron all over and thank God even more for her. I wish…

"Eat what you can and leave the rest." What a montra that has become. When I was a little girl, like all kids, we were expected to eat what was on our plate. Grandma never fussed if we didn't make it all the way through our green beans or rice. She didn't make us clean our plate before we could grab a tea cake on the way outside to climb in crepe myrtle trees in her yard. She always made sure we ate enough, but never more. Since Patrick was diagnosed last year, I have had to come to terms with the fact that sometimes you can work yourself to exhaustion, and no matter what you do, you just cant get it all done. That emotions can flood in until you feel like you are digging a hole in water. I feel like that more than ever. I need to carry the household from day to day so that Patrick can spend his time getting better and not worrying about the daily grind of dinner, dishes, laundry, and the like. I come home, start dinner, unload the dishwasher, pick up Cameron's trail of crayons, set the table, eat, and straighten up the kitchen all before kicking off my high heels. That mountain of laundry will live to see another day - maybe the weekend they will get washed. Wait, didn't I say that last weekend? I see people like that little girl who is in the fight of her life, and she isn't old enough to speak in a sentence. I see Patrick's body weak and horribly bruised knowing that there is nothing I can do to fix it. I try and keep Grandma's voice in my head. I can see her right now standing in the kitchen stirring away. "Eat what you can baby and leave the rest."