Cancer 2.0

A good man lost

2011-10-26T23:56:00.013-04:00

It seems that I only write when my heart is heavy and burdened. I have decided that I write when I need to and not when I want.

At 2:49 on October 19, 2011; Patrick lost his long battle with cancer. I am so proud to say that he was my husband, friend and loving father to our amazing daughter.

A little over month ago Patrick did what everyone, including me, thought was impossible – he went back to work. Nearly one year to the day from the time he came home from Texas with the news that he had less than a year to live, he returned to work with such joy in his heart. We got up that morning and the smile on his thinned face lit up the room. It was a day that he had looked forward to for so long. After nearly a year of sickness, countless sleepless nights, and treatments the brought him to his knees, he went back to work. He came home the first day back and was visibly exhausted. He leaned heavily on his cane to from the door to the couch where he dropped like a stone onto the chocolate leather. In spite of the weakness in his body, there was a sparkle in his eyes. He had once again done the impossible. He worked for three days; three days that were never supposed to happen.

The following week Patrick began to complain of severe back and shoulder pain. He took over the counter medicine and then prescription ones, neither of which relieved the ever-growing pain. He constantly wanted me to massage his back, and I spent hours kneading out the knots down his back that seemed to multiply. I barely slept for more than a few hours, and my hands began to swell so much that I couldn’t get my wedding ring off. He had a routine appointment with his oncologist coming up so he decided to let it ride.

On Thursday, September 22 Patrick’s pain level was severe, but seemed to be bearable with medication. His mother was in town, and we had all gone to bed. Cameron lay between us and as usual Patrick asked me to rub his shoulder. I rubbed and rubbed and rubbed until my arm began to cramp. I stopped and read for a while. After an hour or so, the request came again. Begrudgingly I put down what I was reading and worked out the knots with the un-cramped arm. After a while of that he seemed to find relief so I returned to my reading. Around 11:30 he all but begged me to massage his back, and I asked him, “Honey, what is going on? How bad is your pain – 1 to 10?” He just said, “Please just rub it!” Rolling my eyes I did, and then things changed. He got up from the bed and went towards our bathroom. He was overwhelmed with pain and tripped over one of Cameron’s toys left in the floor. I got him up in the bed, and my irritation turned to worry. He began to hyperventilate. I told him, “Patrick, you have got to calm down. Where exactly is it hurting? You are going to have to calm down. Take a deep breath. Slow down!” Then he began talking very quickly, and nothing he said made any sense at all. His rant was as if you had thrown a dart at a dictionary. “Income taxes, translation, and bread.” My heart went from worried to terrified. I gave him a pen and said “Honey, write down what you want to say. You are not making any sense.” He looked at me like I had three heads, and said, “Don’t be ridiculous. Why are you crying?” All of a sudden he got a very far away look in his eye. “Patrick, do you know where you are?” He replied as if I had asked him if he was from Mars. “Of course I do!” Then I asked him, “Honey, do you know my name?” The timber in his voice changed, and softly he said, “No.” “Do you know your daughters name?” and with the voice of a lost child he replied, “No.”

By this point it was after midnight, and I told him I was going to wake up his mother to watch Cameron, and we were going to go to the hospital. “Erin, don’t go wake her up. It is late, and I am fine.” I told him, “Patrick, you are the opposite of fine. We are going to the ER.” I ran upstairs and woke his mom. “Ms. Noonie, something is seriously wrong with Patrick. I need you to come downstairs and get the baby while I take him to the hospital.” We both sped downstairs, and as I snatched on a pair of shoes and jeans, she tried to get him dressed. Then he stopped talking all together. We called 911, and waited for the ambulance to get there. When the medics arrived I peeled off his medical history faster than the EMT could write – his diagnosis, his medications and dosages, his doctors, his change in mental status, and so on. I grabbed my bag and we headed to the Baptist Hospital. Once we got to the ER they gave him a full work up. By then my twin sister arrived, and crying I told her, “I don’t think I am going to take him home.” Fear ravaged my heart. How was Cameron going to process the fact that she went to sleep beside Daddy, and woke up and he was gone.

During the evaluation the nurse noticed that he had what appeared to be a severe deficit in the muscle tone on his left side. “Does he have a neurologic issue on his left side such as a stroke?” He has been a little weaker on the left since the meningitis, so I was not extremely concerned. They did a CT of his brain to check for bleeding. Long story a little shorter they discovered that he had atypical pneumonia. He had neither fever nor cough, but the delirium and back pain were how the pneumonia presented. His doctor came in and said not to panic. They would admit him, pump him full of antibiotics and that should remedy the problem. Sure enough over the next few days he improved. His confusion abated, after 6 days he was discharged. We packed our things and joyously recovering from yet another setback, we went home. He was still in pain, but his condition seemed to be much much better.

I was wrong.

On Thursday morning his pain had returned with a vengeance. Due to some staffing issues at the office, I had to go in for at least a few hours to run our monthly bills. I left Patrick in the care of my mom, and worked like the elves for the shoemaker. I rushed home with the plan of getting him worked in at his doctor’s office. By the time I got home he was again reeling in pain. My mother’s face was brimming with worry. Not long after I arrived, his mother arrived from her house in Johnsonville. None of us were sure what to do. When I got into the bedroom, I knew he was in bad shape. “I feel like my entire body is going to sleep.” He got up to go into the bathroom, and his pain had him walking as though he were drunk. He got into the bathroom and collapsed on the floor. Like the mother picking the car up off the baby, I pulled Patrick’s limp body to its feet, and put him back in bed. Both of our mother’s eyes were as wide as dishpans. My mother had the phone in her hand. I knew that I was going to be unable to get him all the way to my car, so I told her to go ahead and call for an ambulance. With the second ambulance ride in as many days, we returned to the hospital. Patrick’s abdomen was rigid, and his pain was blinding. Dr. Smith came in with deep concern on his face, “This isn’t good Erin.” With teary eyes I replied with a simple, “I know.” “Before we panic, let me run a few more tests on him, and let’s go from there.” I waited while they ran labs and did an x-ray of his torso. Dr. Smith returned with a sly grin and said, “Well Erin, there is no other way to put this, but your husband is full of shit.” I said, “We have been together for 10 years. I could have told you that a long time ago.” It appeared that his entire GI system had shut down. Dr. Smith said that they would admit him and give him some meds to get his system working again. He would have to take meds for the rest of his life to keep that from happening again. Little did I know at the time, the rest of his life was only a couple of weeks.

After being awake for nearly 48 hours, his dad said that he would stay with Patrick for a while so I could run home, take a shower and a quick nap, and pack for a longer stay in the hospital. Over the next day or two the weakness on his left side began to impede his ability to walk. After falling on the way to the bathroom, the doctors ordered him a walker to help stabilize him. They ordered a physical therapist to come evaluate Patrick to help him strengthen the weakness in his leg. The doctor told us that because he has been so weak for so long that it wouldn’t take much time in the bed to cause his muscles to atrophy. Rather than getting better, the weakness began to spread to his right leg and then his hands. His voice got extremely hoarse and he started loosing some fine motor control in both hands. Each day the decline was evident. He fell again and again, and walking just a few feet down the hall wore him to the point of exhaustion. I knew in my heart that this was the beginning of the end. Dr. Smith was out of town, and one of his colleagues was filling in during rounds. After reviewing his chart and talking with Patrick, another doctor from SCOA whispered to me to come into the hall. Very nonchalant I said I was going to go get a cup of coffee from the family room, and I would be right back. Now it is important to note that this doctor is one of the funniest most light hearted people I have met in a long while. Once in the hall he looked at me with a somber face and said, “Mrs. Stone…” It was clear that he was searching for the words to tell me that Patrick wasn’t going to get any better. I spoke up and said, “I know.” I began to well with tears, and he asked me what I wanted him to do. “What do you mean?” He said that he could up his steroids and order an MRI but he didn’t think it would help. “We will at least feel like we are doing something to help him.” I asked frankly, “What should I do?” He replied with tears in his eyes, “Make him comfortable and make him laugh.”

I immediately emailed Dr. Kupferman at MD Anderson. I gave him a short version of the last year or so, and then a summary of the last two weeks. Rather than emailing me back with information, he requested my number. I had gone home for a hot bath, and my phone rang. Surrounded by bubbles he began to tell me what I had in store. He said that Patrick had reached the point of no return, that he had fought the good fight, and that his cancer was taking over. He said that he thought Patrick had a month or so left. He said that the symptoms would just get worse, and that if it were him, he would take Patrick home while I still could. We talked until the bath water was cold and my toes were shriveled like prunes. I hung up with a very heavy heart, but a mission – I was taking him home. When Dr. Smith returned on Monday, he told Patrick that he could either go home with Hospice or be discharged into a nursing care facility if he wanted to leave the hospital. I’d be damned if I was sending my husband to a nursing home. We were both eager to go home, so the hospital began making arrangements to discharge us. One of the preparations included me signing Patrick’s DNR.

Tuesday morning the hospice agency had massive amounts of equipment delivered to our home. A hospital bed was set up in the living room with an oxygen machine, suction machine, wheelchair, bedside commode, and a sea of other things. Once everything was set up the hospice agency called the hospital and let them know that they could bring Patrick home. He was much to weak for me to bring him home in my car, so again he was transported back in an ambulance. The paramedics rolled him in on a gurney, and in one pull of the bed sheet under him, Patrick was officially home. In spite of the pain in his body I could feel the warmth in his heart to be back to the place for which he had been longing. My exhaustion vanished and my spirit soared to have him home. His return embodied the immortal words of Dorothy that “there is no place like home.”

I knew going in that his return home was going to be an amazing amount of work. The years of care paled in comparison to what the next 8 days would hold. Each day Patrick was dramatically worse than the day before. He began to melt like a candle right before my eyes, and there was nothing that I could do to tame the flames.

Because of his inability to walk, they sent him home catheterized, which alleviated some of the burden of his most basic needs however there were others that we had to help him with. In a roughly choreographed waltz, his father and I lifted his weak wilted body onto the bedside “facilities.” The embarrassment I felt for being in the same room with both my father-in-law and disrobed husband paled in comparison with the helplessness that ravaged Patrick's spirit. Then I felt warmth in my heart as his dad and I returned him to the bed – this is what real love is. Love is putting ones humility aside, and giving to someone else.

By Wednesday Patrick had totally lost the ability to bear any weight on his legs and had lost most of the sensation in his left leg. His hands had lost the ability to grip most objects, and they shook. He could feed himself, but he wore about as much as he ate. His pain was vicious. He was taking so many medications that were all on a different schedule, so I purchased a white board to track when he got his last dose and when he was due for the next one for each medication. The fine motor control in his hands had declined to the point that I had to put each pill in his mouth for him. The cancer stole his independence like a thief in the night.

Over the next few days Patrick continued to decline at an alarming rate. Each day was noticeably worse than the day before. His voice got weaker and weaker to the point that I was virtually reading his lips, the paralysis continued to spread across his body, he started to have difficulty swallowing and a cough that started in the hospital became non stop. He couldn’t swallow some of his medications because they were to big to get down, and to help with the coughing he was put on a nebulizer because he couldn’t take regular cough medicine. His care was round the clock. The days morphed into one big day barely divided by the darkness or light outside the windows. Sleep was a distant memory. Mr. Bill and I pulled the night shifts. We were up with him until around midnight, and then his pain medications wore off promptly at 3:00 am, which was the next call to action. Patrick’s dad and I massaged wherever the pain struck. I gave him his medications to ease his pain and help him breathe without constant coughing. My mom got up with us and made coffee for us or helped adjust pillows to make him as comfortable as possible. Normally Patrick’s dad and I were handling all of the heavy lifting, and our mothers were helping with other things. During the days my mom did the cooking, and Patrick’s mom took over with Patrick when I needed to leave the house to pick up supplies or needed to catch a few hours sleep.

The weekend brought a virtual end to his oral medications. Each time he tried to swallow anything he would get choked. Even water was nearly impossible. He would struggle to even hold a bottle of water. It seemed his body couldn’t tell how much pressure it needed to hold the bottle, and he would crush it in his hands as he attempted to drink. His hands fought to bring the mouth of the bottle to his lips, and his attempts to quench the thirst he complained of was defeated in a wave of coughing. He was able to eat ice cream and sometimes a little Jello, so to help his pain we crushed his pain pills into a fine powder and fed them to him in a swirl of vanilla and chocolate. He could no longer drink from an open topped cup without spilling it all over him, so he asked his mom to get his some sippy cups which were still a challenge. Anything he wanted to hold I had to place in his hand and wrap his hand around it because he had no control of what he was doing.

The cancer was trapping him in his own body. The Patrick I knew and love was a prisoner in his ever-weakening body.

On Saturday we called the night nurse to come out when he began coughing so violently that we were all afraid. Patrick’s mother asked about a possible feeding tube, but the nurse said that tube feeding wasn’t something that was normally done in Hospice care. It was considered “aggressive care.” I had been told before that IV fluids would do more harm than good. The nurse told me that because his body was to weak to process the fluids, they would back up in his lungs, and he would virtually drown in his own body. I spoke to the nurse in private and said to her, “I am not sure exactly what to do, but I don’t want him to starve or thirst to death in the middle of my living room.” She replied, “Mrs. Stone, as sick as he is, his body is not going to be able to process food even if he could swallow. He doesn’t have long.” I stood on my porch in the cool fall air and cried. We wearily made it through the weekend keeping Patrick going on ice cream, pain meds, and lots of prayer.

Monday brought a true near death experience. The day was like the days before. We did our best to keep him as comfortable as possible, and we waited on the scheduled visit from his nurse, Mary. Just before his nurse got there Patrick’s breathing got very labored, and rather than breathing from his chest his breaths came from his stomach. He looked at me with fear in his eyes. “I can hardly breathe.” I asked him if he wanted me to give him a breathing treatment, and before he could respond I was racing to get the nebulizer loaded. The clouds of medication poured out of the face mask as Patrick struggled to breathe. The nurse arrived, and she saw the trouble he was in. She got on the phone and called the oncologists’ office and said that we needed liquid morphine and we needed it now. Patrick’s mom rushed to the pharmacy, and the nurse called the social worker, Joetta, to come. Patrick’s mom returned, and the nurse administered the medication. Slowly his breathing became less and less labored, and the waves of breath from his belly moved back into his chest. Mary refused to leave for a few hours until she was comfortable that Patrick was stable. When Mary fished packing her nurses bag, I walked the two ladies out. The moment I broke the threshold of the porch I began to cry, “I was afraid he was going to die right there.” Mary looked at me with a heavy heart and said “I was too.” She went on to tell me that she thought Patrick only had a few more days. She said because he was so young and his heart was so strong he may make it to the weekend, but I needed to get ready. Monday night we had to call a nurse out again because Patrick was really struggling with pain and the challenges breathing came and went. As she left she gave me “the blue book.” It is a small book on things to expect and look for when someone is about to die. “Mrs. Stone, it is going to be soon. Read this and keep an eye out for these symptoms. It isn’t going to be long.” Broken hearted, I walked back in the kitchen, blue book in hand, and Patrick’s mom saw the book in my hand. “Is that what I think it is?” I just looked at her totally numb and all I could muster was, “Yes mame.” She grabbed her chest and cried. I went back to Patrick’s bedside and lay down beside him. I slept with him for a few hours. I knew that it may be the last time we shared a pillow.

It seemed like everyone knew that time was drawing very close, but nobody had really talked with Patrick about it. I spent the entire night awake crying and praying about what to do. I knew in my heart that time was running out, but how was I going to tell the man that I love that he was going to die. I prayed that God would give me the wisdom and strength to tell the father of my wonderful daughter that the day we had feared was close.

Tuesday morning brought a beautiful and bittersweet day. I left my room to the sound of Cameron laughing and the smell of my mom cooking bacon in the kitchen. I walked in with a heavy burden in my heart. I sat down on his bed. He asked for some water, and he struggled to hold the bottle. Once in his hand he crushed it trying to get it to his lips. His frustration was evident, and I gently took the bottle from him and placed it on his lips. The smallest sip was impossible to swallow. “I am so thirsty. I just don’t know what to do.” I looked at him and said. “Honey, you are really really sick.” With no strength in his voice he said, “What does that mean? I need more than ‘you are sick.’” Holding back the sea of tears in my heart I said the words that I never thought I would say, “Patrick, I don’t know how to say this, but your body is shutting down and you are dying.” With terror in his face he said “No. I want to talk with a nurse or doctor.” “That is fine honey. I’ll get someone out here to talk with you, but I thought that it should come from me rather than someone you didn’t know.” The tears began spilling out of my eyes and I said, “Honey, I am so sorry. You have been so strong and have fought the good fight. We have done everything medically possible. We have done all the right things, but sometimes you can do all the right things and still get a terrible result.” The spilling tears turned into a flood. “Who knows?” he asked. “Your mom and my mom were there when the nurse came last night so they know.” “Does Daddy know?” I said, “I didn’t feel like I should tell him before I told you.”

We talked for a little while longer, and then he asked me to leave the house. “You, your mom and Cameron go outside. Go get Momma and Daddy. I need to talk to Momma and Daddy” It was early and my mom was still cooking. “Is the kitchen OK? Cameron is in her pajamas, it is kind of cool outside, and Momma has eggs on the stove?” “No, I need you to go outside.” I went and got Patrick’s mom and dad, and Cameron, Momma, and I went outside to eat our mostly done breakfast in the back yard. I pushed the food around on my plate praying for God’s mercy. I could hear Patrick’s parents’ tears through the closed door, and all I wanted to do was run inside to be with them. I knew that Patrick needed this time to do something a 37 year old man should never have to do - say goodbye to his parents.

After talking with them together and then individually, he said it would be OK for us to come inside. I rushed back to his bedside, and he asked me to go bring the baby to him. My heart sank because I knew what was going to be said. I got Cameron out of the kitchen, and in her little flower pink footie pajamas, I set her up on the bed. Between waves of choked back tears Patrick began, “Cameron, I love you so much, but Daddy has to go.” With a confused look on her precious 3 year old face she replied, “Go where?” “Baby, Daddy has to go to Heaven.” Cameron began to cry and said, “Daddy I don’t want you to go there. You have to die to go there.” Hot tears burned down my face as I held her in my lap. Patrick searched for the words to soothe our greatest gift from God. He told her how much he loved her, and that he would always love her, he would be watching out for her, and he would be looking down from Heaven watching her grow up into a beautiful young woman. “But I will miss you Daddy. I don’t want you to die.” While Patrick began to cry, I stepped in and said, “Honey, you know how Daddy has been sick for a long time. I know it will be sad for us, but when Daddy goes to Heaven, he won’t have to be sick anymore.” Neither Patrick nor I could ever have prepared for this moment. The sound of our little family’s hearts breaking was nearly audible. The three of us talked together for a while, and then Cameron went back into the kitchen.

Patrick and I sat together and wept. We wept for the life that we thought we would have as a family. We wept with exhaustion. We wept in fear. We wept for the life that was being cut so short. We wept. But we also laughed and rejoiced in the life that we had. We talked all day. I told him what an amazing man I thought he was. He told me that he was glad he had married such a smart girl and that I was strong like a bug. I told him that I would always love him, and he told me that he would never be able to thank me for sticking by him through this entire ordeal. I promised him that I would take care of Cameron and raise her like he would want her too. I would make sure she didn’t date any ugly boys, that she stayed in church, and that she was good at math. “She already knows how to subtract!” I said with a laugh. He looked at me with such love in his heart, and said, “I have never worried about how you would raise Cameron. You are an amazing mom, and I am so glad that Cameron is in your hands.” We talked about his illness and how it had changed us. I told him that his illness had changed me, made me stronger, made me love him in a way that most people will never have, made me a better woman. He looked at me and said, “It has made me a better man. It has made me love you more than I ever thought I could. It has made me a better daddy. It has made me the man I am.” I jumped in, “The amazing man that you are.”

Across the course of the day he got to sit down and talk with both of his brothers, and with each person he talked with, he threw whomever was in the house out. The guests multiplied, and so did the tears, but unless he was talking with someone in particular, I sat by his bedside all day. The one thing he asked of me was, “Just don’t leave me, OK.” I don’t remember even getting up to go to the bathroom except to get his morphine to help him breathe. We talked and laughed and cried all day. It was so bittersweet. Our two and a half year struggle culminated in that day. The fear; the hope; the fight; the joy; the faith; the prayers; and the love poured out like a river that filled the house, spilling from room to room and swirling around everyone in it’s wake. My broken heart washed by the torrent of emotion, in my living room with the sound of his oxygen machine humming in the background we lived – truly lived. We took not one moment for granted. Not one word. Not one tear. Not one breath. Not one second was wasted. I drank in every drop that I could. Just as his dehydrated body thirsted for just one refreshing gulp of water, my heart had an unquenchable thirst for each precious moment, and I lapped the moments up eagerly. In that one day we shared more love than many people share in lifetime. I don’t remember the time, but it was very late when I told him that I needed to lay down for just a little while. I told him to close his eyes and get some sleep. I kissed him gently on the forehead, and laid down in my room for a few hours.

I woke up and the sun was out. To be honest, I really have no concept of what time it was. I stepped into the living room to see Patrick’s broken body struggling just to breathe. His mom and dad were around him trying to get him comfortable. I stepped into the room, and took over. His head was leaned to his right shoulder, and he was fighting for every breath. I leaned down and kissed him tenderly on the cheek. I said, “Hey honey, I love you.” He whispered, “I love you too,” and that was the last thing he ever said. I sat down beside him, and didn’t get up. I promised him I wouldn’t leave him, and I intended to keep my word. The family had been called, and the living room slowly filled with friends, family and loved ones. Cameron was in her playroom, and my sisters took turns keeping her occupied. Every hour I gave him the liquid morphine, which he couldn’t swallow. I would put the medicine in his cheek, and I’d hold his mouth closed for a bit. As soon as I let go of his cheek his mouth would open and the sticky orange liquid would slowly drain out onto his lips and beard. I asked my mother for a warm wash cloth, and I dabbed it off.

Patrick looked like a fish out of water. He was sweating so profusely that the pillowcase was soaked. Each breath came from his abdomen and the air sounded as though it were struggling down into his lungs. I had my hand on his chest and his heart was racing just to keep him alive. Around lunch time, Cameron came bounding downstairs, past all the adults and around a maze of medical equipment and tubing. She climbed up into my lap, and asked me, “Momma, is Daddy going to go to Heaven soon?” With a broken heart I replied, “Yes baby, Daddy will be in Heaven very soon.” I told her to go into the kitchen and get some lunch, and if she was good, she could eat it upstairs. I didn’t want her to see him like that. I want her to remember the daddy that took her to swim with the dolphins, and not the broken man I saw in front of me.

I know that the house was full of people, but I couldn’t tell you who was there. It felt like it was just the two of us. My heart was silently screaming in pain. A pain that had no relief. A pain that was blinding me from everything – except him. Over the next few hours it was just us. His racing heart felt like hummingbird wings under my hand, and his breaths were battles in and of themselves. Patrick was a fighter, and he wasn’t going to give up. I knew in my heart that he didn’t want to stop fighting for our family – our little family who has done nothing but fight for what seems like a lifetime. I felt it deep in my soul that I needed to let him know that he wasn’t giving up. I put my right hand on his cheek that was dripping with sweat and said the hardest thing I have ever said. “It’s ok. It is ok to let go.” I watched him get a far away look in his eye, and I watched his chest rise and fall with a few more breaths. I told him again, “I love you so much. It is ok to let go,” and in just a few moments of me saying those words, Patrick took his last breath in this world and entered into the arms of God.

I could barely hear wave of cries in the background over the sound of my heart tearing apart. I leaned over and laid my head on his chest and cried. He was gone. This shell on which I rested my head was just the vessel of the man that I loved. His spirit was now unencumbered. He is no longer a prisoner of his ravaged body. No longer do the chains of pain, fear, illness, and disease bind him. He has finally found the healing that we had fought for. He is finally free.

Here is his obituary - Patrick T. Stone

A time to feast

2011-01-07T11:43:00.003-05:00

My hiatus from writing has not definitely not been for lack of material. The last few months have been filled with several joyful holidays, lots of chemotherapy, a wedding, and two trips to Wild West. I would suggest before reading any further to get up, go to the kitchen and get a snack and a drink because this will be a long one.

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Now that you are back, here is the update.

After our last trip to MD Anderson, Patrick was placed on a chemotherapy schedule of two drugs - Taxatere and Cisplatin. He had treatment every three weeks. Treatment day started first thing in the morning on Wednesdays. The infusion of the drugs took between 6 to 8 hours. The following day we would return to SC Oncology for around 4 hours of IV fluids and a shot that stimulates the bone marrow to produce white blood cells to help stave off infection. On Wednesdays and Thursdays Patrick did very well, but with Friday came the horrible side effect that people imagine when they think of chemo. For the next few days Patrick was plagued by nausea, vomiting, pain, exhaustion and much more. He would get up 5 or 6 times a night either in pain or to throw up. I haven't slept as lightly since Cameron was an infant. If Patrick gets up or takes an off breath I am wide awake, which has caught up on me. People ask me often "How are you?" The polite and Southern lady answer is "Hanging in there" but the honest answer is "Absolutely exhausted." Most days I would give a kidney for a nap. Not a cat nap, but a really good nap. The kinds of nap that you had when you were a kid who would fight a nap like a pole cat. The kind of nap that you wake up refreshed and a little sweaty from sleeping so hard. That is the kind of nap I want. It is on my long lists of things I will get to - eventually. It would be very easy for me to fill an entire page with the horrors of chemo. All of the things that you have thought, heard, or imagined are more than likely accurate. Chemo is a poison that makes you better by nearly killing you. Our hope was that the chemo would begin to shrink the tumors, but it would be several months of treatment before we would know.

October brought one of my favorite holidays - Halloween. Most years I have my costume planned out months in advance, and my sisters and I spend weeks picking fabrics, sewing and detailing. Last year Cameron and I were a lion and a lion tamer. I spent nearly 9 hours hand beading my lion tamer jacket. That is how much our family loves Halloween. With taking care of Patrick and Cameron and working, I wasn't able to get into Halloween mode this year. Patrick's mom came into town to help out the week of Halloween. Patrick asked Cameron what she wanted to dress up as, and of course she said "Dora the Explorer." While I was at work Patrick and his mom went to the store and looked for a Dora costume, only to find nothing that met his standards. When I came home from work my kitchen table looked like the art table at Vacation Bible School. There was glitter, hot glue, and little pieces of art foam everywhere. Out of the sea of art supplies Patrick pulled out a perfectly made rendition of "Backpack." Cameron was beside herself! Patrick had also made "Adventure stars," "Map," and bought her Boots the monkey, and a little black wig. Her costume was for lack of a better word, perfection. She strutted around the neighborhood, and I was just as proud as a peacock. I mean that literally, I dressed up as a peacock. Cameron insisted on calling me a turkey for the first half of the trip through the neighborhood, but I was finally able to convince her that I was indeed a graceful bird rather than a delicious one.

November brought many things to be thankful for. My twin sister Rebecca and her now husband Ellis had been engaged for awhile when they heard about "The USC Love Story." The hotel and hospitality program at the University of South Carolina gives a family a wedding every year. Interested couples write an essay on why they should win, and the lucky couple wins a dream wedding. Rebecca wrote a beautiful essay about Patrick and Cameron. She said that she didn't want Patrick to miss the opportunity to walk Cameron down the isle. It was so moving and sweet that it brought me to tears. Apparently I was not the only one because the students in the wedding planning class said that they all cried and didn't even read any of the other entries. They were married on Sunday, November 14th (which was also my mother's birthday!). Unfortunately Patrick had chemo the week of the wedding, so the weekend was a struggle for him. The rehearsal dinner was on Friday, and before the meal, Rebecca asked Cameron to ask the blessing. Normally her grace is "Thank the Lord for dinner. Amen." (Daddy taught her that one.), but at school they sing a little song before they eat. I held her and took her to the front of a room filled with family, students, and friends. She began to sing very softly and so I whispered in her ear "You have to sing louder so everyone can hear you." Then she began to sing at the top of her lungs. "Thank you Father. Thank you Father. For my food. For my food. All the Father's blessings. All the Father's blessings. Come from you. Come from you. Amen." From the mouths of babes. There was a unison sigh of "Awwww." and people began to clap. Cameron, the modest one that she is said, "No clapping. No clapping." I laughed until I nearly busted a stitch. Even before the rehearsal, Patrick was feeling the effects of his treatment. He was very weak and nauseated. During the meal Patrick said the most powerful, poignant, powerful thing I have heard him (or anyone else for that matter) say. One of the guests (who I will allow to remain nameless) was talking to Patrick about his illness and how he was doing. Then this guest asked what I felt like was a totally inappropriate question for such a venue. "Aren't you mad at God all the time?" There were several people at the tab, and I was talking with my best friend Amie (I have known her since kindergarten and she is STILL one of my dearest friends. How many people can say that?), and we both overheard the question. Now we have know each other so long that we were able to "talk to each other" while in truth we were listening to the conversation between Patrick and this guest. Patrick's reply was the most amazing statement of strength of faith that I have EVER heard. "How could I be mad at God. I have so many blessings in my life. I have an awesome family, supportive friends, and a beautiful little girl. I am not afraid to die. I am afraid of what I am going to miss, but I know that one day I'll see her again. I am not afraid." Amie and I looked at each other and I could see in her eyes that she felt the exact same way I did - the simultaneous feeling of shear amazement and urge to vomit. "I'm not afraid." It rung in my ears like a gunshot "I am not afraid." That makes one of us, because I am scared to death. (A poor euphemism I know, but true) I sat there speechless (and for those of you that know me, know that it takes an act of Congress to do that) in total awe of him. I don't think I was the only one. After we ate we ran through the ceremony. Just seeing Patrick practice walking his little girl down the isle choked up everyone in the room. He walked her in, then she came and stood by me while Patrick sat down by my mother. As we stood up holding our beer flowers (one of the students said that we needed something to hold in lue of flowers, so she got all of us a glass of beer. Very good idea.) and getting directions from the wedding director, Patrick got up and stepped to the bathroom. As he was standing up I caught his eye, and I knew he was getting up with intent. I gave him a few moments, and then quietly handed my beer to the stand in bride and went into the men's room. Walking in I heard Patrick heaving violently. I saw the soles of his shoes underneath a stall door. I pulled the door open and rubbed his back while he heaved. He was huddled over the commode and beads of sweat broke out on his brow. As I rubbed his back I could hear his voice ringing in my ears, "I am not afraid."

Sunday brought the wedding, which was stunning to say the least. The wedding was on a yacht and catered by one of the most delicious places in town. Rebecca was radiant and her hair, dress and makeup sung of old Hollywood glamor. Getting ready was a production. There were make up people, hair people, dress steaming people, driving us around people, …. there were people everywhere. After getting all dolled up, the girls headed to a houseboat that was moored beside the yacht. We got our dresses on, and waited on the men to arrive. When Patrick got there, he looked weak, but extremely handsome in his tux. Seeing him walk her down the isle helping her sprinkle her flowers was a moment that I will never forget. I was overwhelmed with so many emotions, primarily love and joy. He was walking our little girl down the isle. He wasn't giving her away, but really, what father ever truly gives his little girl away. Patrick wasn't able to stay for the reception, so his father took him home. The boat toured the lake during the reception. I can't remember the last time that I went out with the girls, much less went out dancing. I danced from the time the DJ started the music until the boat docked. it was such a release. I am sure that some there may have thought that I had had a drink to many, but they would be wrong. I didn't stop long enough to drink. I didn't eat. I didn't really talk with anyone. I just danced. It was an amazing day. When I got home Patrick was in bed. I slipped Cameron out of her flower girl dress without waking her and put her in the bed. I put on some pajamas, and slipped in the bed beside them both. I rubbed his back, kissed Cameron on the head, and again his words rang in my ears. "I am not afraid." I went sleep with those words.

Thanksgiving was filled with lots of food, fun, and family. Fortunately Patrick wasn't scheduled for chemo until the week after Thanksgiving, so he was able to really enjoy the pleasure of Thanksgiving. Thanksgiving is my favorite holiday of all. It is time to gather with family, enjoy each other's company, and eat. Then nap and eat some more. There is no pressure, no stress, and no last minute running to grab that gift you forgot to buy. It is just about being together and loving the ones you are with. I love love LOVE Thanksgiving. We celebrated with Patrick's family on Thanksgiving Day. Patrick and his dad fried a turkey and grilled ribs in the yard, while his mom and I worked in the kitchen. My parents came over and then Patrick's brother Shep, his wife, and their three boys. Cameron, Hunter, Avery and Jentzen played in the living room while the adults drank coffee in the kitchen. When dinner was ready the kids circled up at the small table in the kitchen. We all ate and laughed and reveled in the joy of togetherness. Friday we celebrated at my mom's house. We had 14 at the house (I think. I was in a Turkey daze), and the small kids table from the day before transformed into an enormous kids table that filled the entire porch. The family that we were born with and the family that we were lucky to add along the way ate until our eyes bulged. One of the biggest lessons of our journey through cancer is to live in the now. In the back of my mind I knew that Patrick would probably have a very hard night because of all of the activity of the day, and that the following week would bring treatment, but that was for another time. The now was filled with smiles, laughs, and cranberry sauce.

The Monday after Thanksgiving, Patrick and I flew out to Tulsa, Oklahoma to get an opinion from The Cancer Treatment Centers of America. He had a good family friend who went out there with very positive results. His team in Columbia told Patrick that they would support Patrick in whatever decision that me made, but they thought that it may not be worth the while. As with most things in our life, my plan is to support Patrick in whatever he feels is the right thing, so he got things lined up and CTCA flew us out there. I know that all health care providers have their strengths and weakness. People should see themselves as healthcare consumers - you seek out the care that works for you. When we got to the airport they had a car waiting on us at the airport, and everyone was extremely nice. It looked more like a hotel than a hospital. Everyone was so nice. They remembered your name after only talking with you once. They helped you carry you paperwork from exam room to exam room. Did I mention that they were very nice. Maybe I have become cynical in my old age, but they seemed too nice. Stepford wife nice. There was virtually no waiting on your appointments which was refreshing, but after getting their suggested treatment plan, we both knew that they did not have the background or expertise to work on Patrick's treatment. If the suggested plan wasn't enough, then they administered his scheduled chemo, and all hell broke loose. They didn't want to give him his normal chemo to start with. They wanted us to jump on board with the plan that they had come up with, and throw what we had been doing to the wayside. We told them that he WOULD be getting his chemo, and that before we made any decisions to change his treatment plan, we would run it by his doctors in Houston and in Columbia. The doctors seemed irritated by this, which really put a nasty taste in my mouth. As mentioned before, Patrick's chemo takes 8 hours on one day and around 4 hours the following day. In spite of us telling them multiple times, they pushed his chemo in less than 4 hours. They gave him one liter of fluids the following day which is less than half of what he normally gets on day two. After his fluids we flew home. Right before we landed in Columbia, Patrick started feeling VERY bad. That night he threw up so violently that it was frightening. By the first of the week Patrick was so bad off that I called his parents to come up and help me. He was in constant pain, throwing up for nearly two weeks, and other side effects that could have easily been avoided if the people at CTCA had just listened to us. Their unwillingness to listen to the patient, led to nearly a month of suffering for our family. I won't make a glaring generalization about their facility. I am sure that they do a lot of good for a lot of people, but for us, they did much more harm than good. I wouldn't recommend them to someone in our situation.

With December brought even more celebrations. In spite of how sick Patrick was, he decided that he wanted to take Cameron to The Lights at the Zoo at Riverbanks. We bundled up, and Patrick, Ms. Noonie, Mr. Bill, Cameron, and I packed the car. When we got there, Patrick got a wheelchair, and I put Cameron in the stroller. Mr. Bill pushed Patrick, and I pushed Cameron and off we went to see the great light display. Low and behold who do we see? Santa Clause was at the zoo! Cameron was VERY excited. I stood in line, and talked with Cameron about what she was going to ask Santa for Christmas. She very eagerly climbed into Santa's lap and proudly said, "I want a cat, and I am going to name her Abigail." Santa looked at me with a shocked look on his face and replied, "She is awful little, but she has it all figured out." Santa told Cameron that he would see what he could do, but cats are sometimes hard to come by. Thanks Santa! We got some hot chocolate, looked at the animals that were still awake, and sang Christmas songs as we walked around. Patrick said that he didn't really feel like going, but he wanted to build memories with me and Cameron. It was a wonderful gift.

On the weekend before Christmas we went down to celebrate Christmas with Patrick's family. On Friday night, Patrick's home church had it's Christmas program. There was a nativity filled with children in homemade costumes. There was a black and white cow who had blonde pig tails, a wise man with a tin foil crown, and baby Jesus was given a bottle halfway through Silent Night. It was precious. After the program, the church had a big dinner and they gave gifts to the children. Cameron played with some of the other children in the church, running around, and laughing without a care in the world. She and the little turtle dove from the manger scene sang songs and danced for the longest time. The following day was the Stone Family Christmas get together. Patrick's dad is one of ten, and all of his siblings, their children, grandchildren, and a few great-grands go to Patrick's grandmother's house for a big dinner. The last two years it has rained the day of the dinner, and this year was no exception. Last year the men of the family spent more time trying to get the cars that had bogged down in Grandma Gracie's yard out of the mud than they did eating. Patrick and his brother ended up covered in mud. To limit the manual labor and to trim down the dry-cleaning bills, the family moved the celebration to the church. Once again Cameron found a little gaggle of girls and they ran around laughing and playing for several hours. Seeing Patrick with his cousins (and there are A LOT of them), aunts, uncles and other family did my heart good. He laughed and cut up with everyone. Of course everyone wanted to know how he was doing, and in spite of feeling weak and under the weather, he pressed through. I think that it did him good to see everyone, and I think it did them just as good. To make the holiday trifecta, Sunday brought Patrick's immediate family's celebration. Mr. Bill made a pilau and deer wrapped in bacon and Ms. Noonie had some wonderful sweets. The children opened their gifts, and after some batteries were installed, Cameron had a little computer, Avery got a Nuff gun (and with that I am sure Shep and Stacy got some super glue.), Hunter got a DVD, and Jentzen got a sword. As the kids ran around pillaging the living room, I opened my gift from Mr. Bill and Ms. Noonie - a ceiling fan for my kitchen!!! I am so excited about it. Mr. Bill came up Christmas weekend and even installed it for me!

My goal this year was to make Christmas just as picture post card as I could. Patrick's mom and dad came up to our house for Christmas Eve so they could see Cameron open up her gifts from Santa. It was a very exciting morning. Santa brought Cameron a pink and purple tricycle with a big red bow, a big orange ball, a Dora doll and blanket, and a the biggest bubble wand he could find. We spent most of Christmas day playing with our gifts from Santa. He brought me an iPad, and Patrick got a REALLY lush robe. The gift that Patrick gave to me was one of the most special gifts I could have ever asked for. He drew a picture of Cameron. It is stunning. I don't cry to often, but I welled up with tears. Patrick's parents went home about mid morning, and then my parents came down to get ready for the Poston Boxing Day Christmas Celebration.

On Sunday morning, we woke up to snow. Patrick woke me up and said, "Look outside! Get up, and get the baby dressed. Lets go outside." I pulled on a sweatshirt and pulled out the mittens. I got Cameron all bundled up, and Patrick, Cameron, my parents and I went outside and built a snowman, made snow angles, and thew some snowballs. Patrick gave our snowman green grape eyes, and I gave him holly berry lips. Once we put a Converse College hat, our snow man looked more like a snow woman, so Cameron and I named her Betty White. After playing in the snow until our noses were red and runny from the cold air, we went inside. Momma and I started a pot of coffee, put on my apron and thew the ham in the oven. Then I went into the living room, and started a fire. I lined up all of our wet shoes and boots by the door, and hung our wet gloves by what had grown into a roaring fire. I cooked the rest of the morning, and around mid-day family and friends started to arrive. Every one came with a lovingly prepared dish or dessert and an arm load of gifts. The house was filled with warmth from the food, to the fire, and the fellowship. I stoked the fire between stirs, and then we popped a few bottles of bubbly. We had pilau, duck, ham, oyster dressing, two sweet potato dishes, a green bean casserole, and desserts galore. The house was full of laughs and smiles. We moved the party from the kitchen to the living room, and we opened gifts. There I was still in my apron sitting on the floor in front of the fire, completely surrounded by wrapping paper and people that I love. My house, my tummy, and my heart were completely full, and it was glorious.

The love and excitement of the day was so wonderful that the most amazing thing happened. For one day it was like Patrick wasn't sick. Patrick's illness is always there even if it isn't on the front burner. The days that he is doing better, the mountain of meds and the calendar of appointments is always in the back of my mind. Then the days he is sick, my life is nothing but his illness. It has been all consuming for the last nearly two years - until Boxing day. It felt like I did before the insanity of cancer. It was like stepping into cool grass with bare feet - refreshing, relaxing, and liberating. It was what Christmas should be.

With New Year's Eve brought Cameron's 3rd birthday. Oh yes, I said it - third birthday. On Thursday I took Cameron to the store and let her pick out the kind of cake she wanted. "I want chocolate cup cakes with sparkles!" she squealed as we walked past the boxes of Betty Crocker. As anyone who has prepared for a school bake sale knows, cupcakes take forever. Of course when you are a kid you have no concept of all the hard work that goes into those jewels of frosted goodness. Speaking from experience because Rebecca and I volunteered Momma to make 13 dozen when I was in the second grade. THIRTEEN DOZEN! After Momma's head stopped spinning like Reagan from the Exorcist, she and my Aunt Fay spent countless hours baking and frosting a sea of cupcakes. (It is important to note, that after that incident, Becca and I were only allowed to volunteer to bring plates, napkins or sodas to any school function until I graduated from college.) Now that I am an adult and understand the true undertaking of cupcakes, I said "Wouldn't you love a BIG cake covered in sprinkles?" "Oh yes I would," Cameron excitedly replied. (Whew!) I started putting the cake together after dinner, and Cameron must have said a thousand times, "Momma, can I eat my birthday cake now?" "It isn't ready, and it isn't your birthday yet. You can eat it tomorrow." Well Cameron must have been an elephant in her last life, because she doesn't forget things. I woke up to her three inches from my face, "Momma, are you awake? It's my birthday! Let's go eat my birthday cake!" I told her that she would have to wait until after lunch before she could eat it. We had planned to take her to EdVenture Children's Museum after we ate lunch as her birthday celebration. I asked her what she wanted for her birthday lunch, and she voted for spaghetti. I whipped up some, and Patrick called his parents and asked me to call mine to invite them to go with us to the museum. It was super short notice for them to make a 2 hour drive, but Patrick wanted them to know that they were invited. Both sets of grandparents took a pass on the trip to the Museum, but I called Rebecca and Leigh Ann to invite them. They were both thrilled to have an excuse to go there. They both said that they have always wanted to check it out, but didn't want to be the creepy old ladies there with no kids. Our friend Joel also has a birthday on New Year's Eve, so he joined the party as did our friend Alexis. We met at the museum at 2:00, and I don't know who was more excited, Cameron or the 6 adults that came with her. We all played like we were little kids. After we played until the museum was closing, the party moved back to our house. Rebecca and Leigh Ann came with us, and we had birthday cake and shot some fireworks. Cameron really liked the sparklers and the fountain style firework that I got. I purchased one of what the lady at the firework stand called the "JV" version and then two of the "Varsity" version of this fountain. The shots only went up about 5 or 6 feet and did this cool volcano thing, and then out. Nothing crazy …. Well anyone reading this should know by now that I am not confined to suggested terms and usages of products. I set up the "JV" edition and lit it, and it was very pretty. It popped about 5 or 6 yellow and pink shots before it FELL OVER and the shots started flying toward us! The first one it the fence across from us, so it was shocking, but not scary. Then one flew towards the house where Becca, Leigh Ann, and Cameron were sitting. I can laugh now because nothing bad happened short of being a little startled, but for a moment it wasn't funny AT ALL. Cameron was done by that point, and cried to go inside. Becca took her in and opened the window so she could see the "Varsity" game. Those two went off without a hitch, and they were very pretty. Rebecca and Leigh Ann left to go to Joel's birthday party. I stepped in the kitchen long enough to start washing up the birthday cake plates, and I hear Patrick call from the living room, "Erin, where is Cameron? I don't see her anywhere." I stick my head into the room, and there she is curled up under the far side of the coffee table knocked out. I just let her sleep. Around 10:00 I picked her up, pulled her shoes off, and put her in the bed. I was ready to go to bed myself, but Patrick stopped me and said, "Don't you want to stay up and watch the ball drop with me?" I quickly recovered with, "Oh, I am just putting the baby down." I came back in and we watched the New Year's events around the world. About 20 seconds before the New Year, Patrick said "Come over here and sit with me." We sat on the couch, and watched the Ball drop over Times Square. He leaned over and kissed me, and said "Happy New Year honey." In my heart all I could think was, "I really hope so."

We flew out to Houston on January 2nd to meet with Patrick's team out here, and get a status report on how things were going. I was very concerned about how well he was going to negotiate the airports as weak as he is, and due to the fact that he is more and more unsteady on his feet. When we got to the airport, Patrick found a wheelchair, and I got our tickets printed. I rolled him up to security, helped him get his shoes off and carry on loaded onto the conveyer belt. When we got up to the gate, the really nice guy that was running the show there saw Patrick in the chair, and came and picked up Patrick's stuff, and said that he would move us to the front and make sure that there would be a wheelchair waiting for him when we got to Atlanta. When we got to that gate, our tickets said that we needed to check in to get our seat assignments. The gate was packed, so I rolled Patrick to a comfy spot, and I went to stand in line. The woman behind the desk seemed far from excited to be at work that day. It appeared to me that she was trying to call someone who's line must have been busy, because she would pick up the phone, press a three digit extension, and then just hang up. It was very bizarre. When it was finally my chance to sit before Her Highness of Hangup, she smacked her gum and talked with the other agent that I think was on break. I handed her our tickets, and she said "Uh, where is Mr. Stone?" "He is over there in the wheelchair." "Uh, Mmm K. Go sit right there, and I'll be with you in a second." Long story short (and I am sure you were wondering why I didn't have that idea about 1,000 words ago), we were upgraded to first class which was super fun. The seats were comfy, and the people sitting around us apparently had never flown first class before. They had been bumped from a pervious flight, and so they got the royal treatment. They were very good old Virginia country boys that were very funny, and once they realized that the booze was free in first class, the drinks started flowing. They ordered a round for the entire first class and said, "Yea, a round for everyone in First Class, and put it on my tab." I got a Bloody Mary, and the lady beside me and I chatted and laughed with and at the fellas from Virginia. She was on the way to MD Anderson with her mother who had stage 4 lung cancer, and she was asking me about it. I told her how much I thought of the people and the facility. I told her to be sure to carry a jacket because it is always cold, and that be ready to wait, but she couldn't have picked a better place to take her mom.

His first appointment was Monday with the Center for Targeted Therapy. Targeted therapy is the department of the hospital that conducts clinical trials and experimental treatments. The doctors have had been working on his case, analyzing his test results, and trying to fit him into a trial. They told us that they did have a trial, and that it had shown positive results in giving people more time. Because Patrick's cancer is so incredibly rare that there isn't a trial for him specifically, but this trial was the closest that they could find that they could work him in. Of course we were both very excited to hear about it, until the doctor told us that his treatment cycle would be every three weeks, and he would only be able to have treatment in Houston. The drugs that he would be taken were extremely regulated by the FDA, and in order fro him to get the treatment we would either have to fly back and forth or move out here for up to a year. I got a huge knot in my stomach as Patrick talked with the doctors. He seemed very receptive of enrolling in the trial. All I could think was "We can't move out here again. What about Cameron? We will have no support. All of our family will be 1,000 miles away. Oh my God, what am I going to do." After we got all the paperwork we left and Patrick and I started talking about the logistics of him participating in the program. I told him that I wouldn't want him to come out here without me and the baby. He said, "We can't afford for both of us to be out here. I am sure I could get Momma or Daddy to come out here with me." I didn't even know what to say. I mean I couldn't say, "Patrick, I don't want you to take this possible treatment that could shrink your tumors because I want you home." But all I wanted to say was, "If the treatment gives you a few more months, and you spend those few months in Texas rather than home with me and Cameron then will it be worth it?" He called his doctors back home, left them a message and said that before he made any decisions he wanted to get some feedback from them as well as Dr. Kupferman. He had an MRI that day, but we wouldn't get those results until Thursday.

We spent the next few days waiting for Thursday. Nichole from SCOA called and talked to Patrick about the chemo that they suggested. She said that it was incredibly similar to the drugs that he was scheduled to start when he got back to South Carolina, and she would support Patrick in whatever decision he made, but that if it were her, she would want to be home with her family. Amen to that! We met with Dr. Kupferman on Thursday, and the good news that we were looking for didn't come. He said that the tumors are continuing to progress fairly aggressively, and that his time was getting shorter. He gave Patrick 4 to 6 months. In very Patrick form he asked about other options, and even said that he was sure that he could design a dural replacement at Zeus. Dr. Kupferman said that if he could he absolutely would, and then he and Patrick cut a few jokes at each other. I asked if we still needed to come back and forth for check ups. It is very hard on Patrick spending hours in airports and sitting for long stretches in very uncomfortable seats. Dr. Kupferman said that he agreed that if Patrick decided not to participate in the trial, that he would be comfortable with us doing the rest of his care at home. He said that we could send him copies of the MRIs and keep him up to date over the phone. He said that if it were him, he would spend as much time with his children too. As he left the room he gave me a hug, and I couldn't let go. He rubbed my back as I softly cried. He said he wished that there was more he could do. I will never be able to thank him for all of the hard work that he has done for us. He is an amazing doctor, and an even more amazing man. As much time as we have spent out here, he feels like family. He gave he a harder squeeze and I managed to break free. Now wasn't the time for crying, now is the time for living.

I am looking forward to getting home. Going home to live in the right now. Right now Patrick is in pain, but he is himself. He is even more like the man I married every day. He laughs and jokes, and he makes extra effort to share himself with the people that he loves. He is drawing more, and I hope that he keeps that up as long as he can. He is building a legacy. He is strong and filled with faith, and he is the kind of man that I want to remember. Facing death and knowing that today is truly all you has a habit of putting things in perspective. That pile of laundry can wait. That grudge should be put down. That time you wait to tell someone how you really feel should be taken advantage of.

As most people, I love to eat. Most people have never really been hungry. More people than not rarely miss a meal, and when they do they are famished by the time the next meal rolls around. A few weeks ago things were so insane and Patrick was so sick that at 11:00pm I realized that I hadn't eaten anything all day. I had one cup of coffee about 7:30, and that was it. I am not much of a breakfast person, so by lunch time the next day I was inches from passing out. I ordered my favorite meal from this great little Chinese place called Egg Roll Chen - steamed dumplings and kimchee. As soon as I put the food in my car my mouth began to water, and my stomach started talking. I couldn't get back to the office fast enough. I sat down at the table and wolfed down those steamed dumplings like a wolf. I ate until I thought I might pop. They seemed extra delicious because it had been so long since I had had anything to eat. I put down my chop sticks and felt totally comfortable. I had finally filled that space in my stomach that had longed to be satisfied. My goal is to make whatever time my little family has together full. Not the "I just ate a few hours ago, so I am eating this candy bar because I am bored" kind of full. My goal is the fullness after eating my mom's cornbread dressing on Thanksgiving. The fullness of that long awaited bowl of hot homemade soup on a cold day. The kind of fullness that makes you feel totally satiated. Every day I strive to give my family that type of fullness of heart. You can never truly appreciate that full felling unless you have been truly hungry. I have spent a great deal of the last year and a half not only hungry, but absolutely famished. The hunger pains for happiness and peace of mind are sometimes nearly more than I can take, but now is not the time for hunger. Now is the time for feasting. Feasting on the love of my family and loved ones. Feasting on the little things. Feasting on whatever time we have together. Not only feasting for me, but making sure that everyone has a good meal at our table. I'll do everything I can to be like my grandmother. She always made sure that if you were at her house that you had a little something to drink and at least a bite to eat.

Let the feast begin.

Spending time together and making it count!

2010-09-29T10:45:00.004-04:00

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.

Here are a few pictures from the trip.

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.

Rude awakenings

2010-09-10T21:48:00.007-04:00

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.

Love remains

2010-08-27T22:24:00.006-04:00

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.

What a wreck

2010-08-09T15:03:00.003-04:00

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.

An anniversary to remember

2010-06-24T00:11:00.002-04:00

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.

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

2010-06-15T14:20:00.000-04:00

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

Was that the sound of chickens hatching?

2010-06-09T14:34:00.003-04:00

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.

Eat what you can

2010-06-07T00:58:00.000-04:00

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."

Moving closer to the door

2010-06-05T17:44:00.000-04:00

Friday brought great progress. For the first time since we arrived in Houston, Patrick seemed like himself. He woke up with absolutely no memory of the previous week. He said that the last thing he remembered was dropping his wallet when he got to the ER, and someone handing it back to him. We gave him the run down of the weeks "adventure." He asked a few questions that to us seemed kind of funny. "So am I going to need to reschedule my appointments for my MRI and to meet with Dr. Levine and Dr. Kupferman?" We all laughed a little, and let him know that he had seem them both numerous times since he checked in, and he had already had a CT scan, MRI, x-rays, and lots of blood work. He seemed a little skeptical which was pretty funny too. We told him that at one point when asked what year it was he missed it by a mile, and that he had been sitting pretty close to death's door for a few days. I reminded him that if he ever scared me like that again; he would need a doctor :) I tried to get him whatever he needed or wanted, and when he jokingly called me a nag, I knew he was back.

A little before lunch the nurses got Patrick up into a chair and he sat up for about two hours. Unlike Thursday, he didn't fall asleep sitting straight up. He watched a little TV, and then they moved him back to the bed. Mrs. Noonie, Mr. Bill, and I went to grab some lunch and let Patrick get some sleep.

After we ate, we sat in the waiting room for a while so not to disturb him. There were several families that we have been sitting with in the waiting room this week. The patients that they were there with were not doing well at all. Over the last week we have laughed together, cried together, prayed together, and just shot the breeze together. We celebrated with a family who's dad was in kidney failure due to his cancer when his body started producing urine. I sat and held the hand of a woman who's daughter was only 44 and not expected to make it. The daughter was diagnosed with cancer a month ago, and there wasn't much that the doctors could do for her. They wanted to take her home so she could spend her last little while with her 17 year old son and family, but she was to sick to. CCU is where success is measured in urine output, and O2 saturation. Where odds are can be counted in white counts and milligrams of pain meds. It is truly where joy and sorrow meet.

Late Friday evening we hit a huge milestone - moving to a room on the floor. "Moving on up. To the [11th floor]." The nurses removed is perriffial IV lines, pulled off his numerous electronic monitors, and sent us to the floor. Four floors up and one step closer to home.

A quick update...

2010-06-04T09:06:00.000-04:00

Patrick's room has been in "isolation" since Wednesday morning because of the fact that he has meningitis. In order to visit him you have to dress in a gown, gloves, and facial mask before entering the room. The door is covered with red and white tape and numerous signs screaming the severity of his illness. It looks like a crime scene. For the last week he hasn't seen much more than blue masks and eyes. I have slept in his room since I got here, and even totally lucid and uninhibited by pharmaceuticals, waking up to nothing but eyes is horrifying. He doesn't remember anything between Monday afternoon and Thursday night, so hopefully he won't have crazy flashbacks of a sea of yellow gown clad, blue latex handed creatures. I know I hope I don't.

When the doctors made their first bout of rounds and evaluated Patrick Thursday morning they were very pleased with what they found. He was able to speak a little, and he could move his left hand. He had a little bit of a far away look in his eyes, but he would answer you with one or two words when you asked him things and he followed commands. His left side was much weaker than his right, but it was HUGE progress. About mid-morning they took him off of the CPAP and the nurses sat him up in a chair for a while. Mr. Bill and sat in the room with him while he sat. Patrick gazed at the TV in spite of the fact that there was no sound with this long far away look on his face, and after just a little while he started to get weak. Mr. Bill and I would call his name and keep him awake. He sat up for nearly two hours. I rubbed his head, and he rested it in my hand and fell asleep. I waved a nurse into his room, and they put him back to bed. They put him back on the CPAP machine, and he slept like a log for the next few hours. While he slept, Mr. Bill, Mrs. Noonie and I went and grabbed a bite to eat.

After lunch, we headed back upstairs and sat with Patrick. Most of the time he slept, and every so often he would open his eyes. He didn't really say much after his adventure of sitting in his chair. That just shows how sick he has been. Just sitting up for a few hours, put him in the bed to tired to talk for the rest of the day. He was able to take his CPAP off and use just the oxygen support from the high flow nasal canula for a few hours before he went to bed. As the night got later he seemed a little more like himself. I took out my cell phone right before he went to bed, and showed him a few pictures that Momma sent me of Cameron and a video of her singing "Old McDonald." That really seemed to perk him up, and then at 11:00 they put the mask back on, and he was off to sleep. I settled down in my cot, pulled the covers over me and slept harder than I have in a week. I was starting to see the Patrick I knew, and that put so much peace in my heart. I could finally rest (somewhat) at ease. I know that Friday will bring even more good news.

A few steps forward and a few steps back

2010-06-03T10:01:00.002-04:00

Wednesday was kind of crazy. We got some information on the what's but not really the why's. And let me begin by apologizing if this is a completely disjointed mess of an explanation, but a completely disjointed mess is about how I feel. Patrick was taken off of the ventilator yesterday about mid-day, and was breathing on his own with just a little oxygen support though a small nasal canula. He had pneumonia in the bottom of his left lung, but seemed to be holding his own.

His blood work came back and the official word is that, in addition to the pneumonia, he has spinal meningitis and a MERSA infection in his lungs. His white cell count were extremely high. It got up to 2,700. (5 - 10 is normal) He was battling a fever which got as high as 103.5. They have been able to keep the fever down with Tylenol and is on several insanely strong antibiotics for his infections.

Last night they had to go up on his oxogen to a high flow nasal canula. They test his blood gasses every few hours to see how much oxogen he is getting into his system, and the counts are low. They draw the blood from an artery rather than a vein, and the blood should be bright red, and his was a dark burgundy. His lungs were so inflamed that he is having a hard time keeping them open on his own enough to get all of the oxogen he needs, so this morning they put him on a CPAP machine. He is still doing all the breathing, but the machine keeps pressure in his lungs so he doesn't have to work so hard.

They did a chest x-ray this morning around 3:00am, and his pneumonia is getting worse. It is now in both lungs. The respiratory therapist said that it is because he hasn't been breathing deeply enough. He said that between the CPAP and the antibiotics, that should start to clear up soon.

His meningitis has had some very frighting side effects. He has been so in and out of awareness, and thank the Lord he stayed awake for longer and longer periods of time. He hasn't been able to use his left hand or look to the left. If you asked him to squeeze your hand, he just couldn't do it. I would ask him is that as hard as you can, and he would nod his head, and he thought he was squeezing it. I would tell him, "Squeeze it just as tight as you can baby." And at the most he would move a finger. That was really hard. I would tell him "Good job baby," and then check his right hand which he could squeeze with no trouble. Lastly, he hasn't been able to talk. You can look in his eyes and see that all the lights were on, and the sheer frustration on his face was heartbreaking. He would nod yes and no, and sometimes he would say yes or no, but that was it. You could see the devastation and fear, and I could hardly stand it. I talked to him, sang, and did all I could to keep his spirits up.

The good news is that things are starting to improve. His white counts are starting to come down. Last night when I finally laid down about 12:30, I told him "I love you." and he whispered back "I love you." I nearly lost it. I kissed him on the head, got out of eye shot, and BAWLED. This morning before I was kicked out of the room at 6:00, he wasn't able to talk, but there is so much joy in my heart that as he is getting better, he can! We just got a report from one of his doctors, and he said that Patrick was talking with him!!!!!! Praise the Lord. The CPAP must really be just the right thing. His white counts were still going down, and what the CCU doctors thought was brain swelling was scar tissue from his surgery! The meningitis was causing brain swelling, but at least it wasn't as bad as first thought. The infection is still bad, but not what they initially thought. His color is better, and he is staying awake longer and longer.

Keep praying, and I'll let you know as soon as I have any more news.

A shock

2010-06-02T09:50:00.000-04:00

Hey everyone,

For those of you that haven't heard, I had to fly out to TX yesterday because Patrick was put into the critical care unit at MD Anderson. He came out here for just a routunie follow up with his surgeons, and about 4:30pm he called me and said that he thought he had pulled a muscle in his neck and wanted me to email his doctor about calling in something for him. I told him to lay down and rest, and I would take care of it. I called him about 5:00, and he sounded like he was really hurting so I told him that I would figure out who & how to get his doctor paged. Once I got that taken care of, I called him back to tell him to be expecting his call, and I couldn't get him on the phone. I called and called for about two hours on his cell and in his hotel room. I thought "Well maybe he went to grab something to eat and forgot his cell," but after two hours, I called the hotel, and asked them to send someone up and go into his room and check on him. They called me back and said that there wasn't anyone in the room. I got pretty scared, so I called the ER and there he was. They had given him some pain meds and a muscle relaxer for his neck, but within a few hours they couldn't keep him awake, and he was not responding. At about 12:30am yesterday they moved him to a room to watch him, and by 4:00 he was in the CCU in a breathing tube. They don't know what is wrong. I immediately got a plane ticket, and flew out. Patrick's mom and dad came with me. Our flight from Florence to Charlotte was delayed and we missed our connector to Houston. I RAN across the airport (it was at least a mile from the terminal we landed to the terminal we needed to board). By the time I got there I was pouring sweat and panting like a dog. We missed our plane, and the girl at the counter said that there were no more flights to Houston. I burst into tears and told her that my husband was in ICU and I had to get to TX. She started to crunch away on her computer and found a flight from Newark, NJ to Houston. The flight to NJ was boarding RIGHT BESIDE US! Then the computer system crashed, and they couldn't get us in the system. Michelle, the precious girl at the counter we on the phone with one hand, clicking away with the other. Her boss was over her shoulder saying "We are not going to hold this plane for stand-by passengers." She looked at me and said "I will get you to TX honey." We watched the people boarding the plane, and they were like little grains of sand in an hour glass. I knew when that line ran out, we were out of luck. She got Mr. Bill on first, and then Mrs. Noonie. I told them to get on the plane and go. If I had to catch up I would. Michelle got my ticket from NJ to Houston printed, but couldn't get me in the system for the flight from Charlotte to Newark. She finally said "14E is your seat. Get on the plane, and I'll work out the details." I don't know if I ever was officially on that flight, but I didn't care. Take that TSA. I started to cry, gave her a huge hug and a kiss on the cheek. She got choked up and told me she would be praying for us.

We got to NJ and I realized that all I had eaten all day was half of a sandwich (thanks Ellis. It was great). We grabbed a quick bite, and boarded the plane. The flight was 4 hours or so. I was sitting beside this really interesting man, and we talked for about an hour or so. He asked about my trip, and we talked about Patrick. It was nice to unload a little after the insane course of the day. We exchanged cards, and he asked that I keep in touch.

We got to Houston at midnight (so 1:00am South Carolina time) and I felt like a wrung out dish rag. Krista picked us up, and took us to the hotel. I was worried that they wouldn't let us get the room keys since I didn't check in, but fortunately they were very nice. I sent Mr. Bill and Mrs. Noonie up to the room, and I headed off to see Patrick.

I got to his room about 1:00am. He was still very sedated, and intubated. They said that there hasn't been any changes. He looked OK. He was had a central line, an IV, and the breathing tubes. He was in restraints to keep his hands down. When he wakes up some he gets very agitated and tries to pull out his tubes. He doesn't respond to commands well, but he is aware enough to know he doesn't like having lots of tubing running here, there and everywhere. His white counts are way up which is a sign of infection (they are between the high 30s to mid 40s and normal is around 10). His CT and MRI didn't show any masses or bleeding in his brain. When they said "Mrs. Stone, his test results show that he hasn't had a stroke." I thought I would puke. His EKG showed that his heart was doing fine. They did an LP to test his spinal fluid, and those results are not in yet. They tried to take him off the sedation earlier in the day, but he kept trying to pull the tubes out, so they had to put him back to sleep. You could tell when the meds were starting to wear off because he would squirm all over the bed and furrow his brow like he was in a lot of pain. I pulled a chair up to his bedside, held his hand, laid my head down on his bed, and did my best to get a little sleep. When he would get upset I would sing to him, and his heart rate seemed to settle. Around 4:45am I moved over to the cot and laid down until they kicked me out a little before 7:00. I was sleeping so hard I think they forgot I was in there. As I was leaving his room this morning, they had taken him down some off of his sedation meds, and he opened his eyes a little and starting getting pretty upset. I told him that I was there. I don't know if he knew it or not, but I hope so. He looked over at me. He was drunk as a skunk, but I'll take "no change" over "deteriorating" any day of the week. I am trying my best to keep it together. I had a great little nurse last night, and she gave me a big hug when I got there and I cried some. The chaplain came by, and we chatted for a while. Patrick's mom and dad haven't come over from the hotel yet, but I am expecting them anytime. I am so overwhelmed with emotions I can hardly stand it. At one point last night, I had this wash of the overwhelming urge to just run. Don't know where, but that flight or fight hit me I guess. I hope to have more information in a few hours. I wish I had more info. The not knowing is gut wrenching. It is just so bizzar. I mean he went from fine to on a ventilator with no idea why in 6(ish) hours. I can't use my cell phone in the waiting room, so if you need me shoot me an email. Please keep the prayers coming.

normal |ˈnôrməl|

2010-04-14T15:58:00.002-04:00

Our last few days have been rather uneventful. Patrick is pretty weak, but he is getting stronger every day. When we got to Krista's house after checking out of the hospital Satuday, we walked in to find two little girls sitting on the couch. Krista's mom (Donna) and step-dad (Foy) are very involved at their church, and while the little girls' older sister was helping Donna work at the church, the girls were watching a movie. Patrick can't pick up anything more than 5 pounds, I had to bring in our luggage. While I was dragging in our suitcases, Patrick sad down in the living room, and the little girls started jabbering away about the movie they were watching. "Wanna watch a movie with us? It's about a princess, and she is magical, and Ohhh, this part is really funny, and her magic spell isn't working because of the evil witch." Poor guy. After getting settled in, I went downstairs, had dinner, and then we all went outside. The weather here is beautiful, and after a week of being stuck in air that had been hepa-filtered to death, breathing in fresh air was better than a cold drink on a hot day. The girls were bubbling with the excitement that can only come from an 8 year old. They asked if we knew how to play charades to which I replied "I think so, but remind me of the rules." As soon as they were done giggling out the directions, they commenced to pretend to be unicorns, frogs, fairies, and trees. They we too cute, and were more than willing to "Take my turn acting. You girls are so good at it, and I am much better at guessing." After they left, Patrick and I video called Cameron. She was wound up tight as a drum. "Hey Momma! Hey Daddy!" was quickly followed by her singing her ABCs, Jesus Loves Me, and Mary had a Little Lamb (all without stopping for a breath). It is always so wonderful to see her. Modern technology is so great. It makes it a little easier to be away - a little.

I hadn't realized how much weight Patrick had lost until we woke up Sunday morning and he had lost his wedding ring. I noticed that it was a little loose when I put it back on him in the hospital. "Oh no, my ring is gone!" I was so worried we wouldn't find it. We had spent Saturday checking out of the hospital, getting something to eat, sitting on the deck, and doing other odds and ends. I was so relieved when I found it amongst the bed linens. After the excitement of the morning (and by morning I mean afternoon seeing that we didn't wake up until 11:45), we had wings for lunch and went to Wal-Mart to pick up a few things. Understandably so, Patrick's 100 or so staples draw a bit of unwelcome attention, so we got a few hats for him - a black pageboy and a Texas Longhorns baseball cap. I'm a big fan of the pageboy. He looks so handsome in it.

Monday I tried to get some work done. The Forget-Me-Not ball is quickly approaching, and there is SO much I need to do. I sent out a few emails, called some of my volunteers, and then said that Patrick needed me to help him do a few things. After dinner, Patrick and I sat outside again, and then we went upstairs to go to watch a movie. After the movie was over, Patrick got out of bed to brush his teeth. When he came back in he said "My eye is swelling." I took a look at his right eye, and sure enough he was right. My adrenaline went through the roof. I went downstairs, got him an ice pack, and watched his face. After about an hour the swelling hadn't gotten worse, so he went on to sleep. I continued to watch his face until 3:00am. We woke up Tuesday morning and both of his eyes were swollen, and I panicked a little. We called both of his doctors, but had to leave messages. After an hour or so, Dr. Kupferman's nurse called, talked with Patrick, and said that he thought the swelling stemmed from the fact that Patrick has been sleeping flat in the bed. They told Patrick that he is going to need to sleep sitting up for at least a few more weeks, if not a few months. Whew! We had planned to meet Michelle and Mike for dinner, but we decided to reschedule so that we could get Patrick's eye situation under control. We spent the rest of the day making sure that Patrick's head stayed elevated. I am really looking forward to having dinner with Michelle and Mike later in the week.

I was talking to a friend today, and she said "I know you are ready for things to get back to normal." Normal - that seems so long ago, but then I thought; what is normal? According to Webster:

normal |ˈnôrməl|

adjective

conforming to a standard; usual, typical, or expected

She was right, there is nothing normal about cancer. Surgery, long hospital stays, radiation, sickness, weakness, more surgery, more hospital stays - for our family this was far from the expected. However, we have had to learn ways to get aspects of our life to conform to the standard. This has become part of our normal. That may at first blush sound like a bad thing, but it keeps me on my toes. For example, one of the hardest things about being in Houston is being away from Cameron, but part of our present normal is using the webcam call to see her. It goes to show that we decide what is normal in our life. Sometimes that has meant incorporating unwelcome things into our usual, and other times it has meant that we make those unwelcome things conform to our standard. Yes, I am looking forward to when our normal is comparable to everyone else's idea of normal, but right now I will make the best of my normal. Our circumstances are different, but we have some things that have always been the standard, usual, typical and expected: we have so much love around us from friends, loved ones, and family; we have the drive to do whatever it takes even when the road is hard; we have the determination to beat this intruder; and we have each other. That is my normal.

She also said that she didn't know how Patrick and I could be so strong. I don't feel strong. As a matter of fact, sometimes I feel like I am doing good just to keep my head above water. So like the true geek that I am, once again turned to Webster:

strong |strô ng |

adjective

1 having the power to move heavy weights or perform other physically demanding tasks

2 able to withstand great force or pressure

We will move this heavy weight. We have withstood the pressure before, and we will continue to do so. Mahatman Gandhi wrote that "Strength does not come from physical capacity. It comes from an indomitable will." We will overcome this battle.

overcome |ˌōvərˈkəm|

verb

Defeat, beat, conquer, trounce, thrash, rout, vanquish, overwhelm, overpower, get the better of, triumph over, prevail over, win against, outdo, outclass, crush

Sounds about right to me.

The oasis of the heart

2010-04-10T01:56:00.003-04:00

Today was a day of emotional whiplash. After our wake up call of doctors (which started at 6:45am! I almost threw my pillow at the neurosurgery fellow that showed up that early), we got the word from Dr. Kupferman that Patrick was ready to be discharged. One of the fellows came in and removed Patrick's drains, put in a few stitches where the drains had been, and gave us the all clear that we could leave Saturday. Dr. Levine said that Patrick was still at risk for a spinal fluid leak, but that if he was going to have one he would have it no matter where he was. Take it easy, no picking up anything heavy or doing anything that would cause him to strain. That causes pressure in your head, and that is what could be a problem. I was just a little short of giddy. Patrick seemed happy, but he is still in a good bit of pain, so the big smiles are left up to me. I asked Patrick what he wanted me to order for him for breakfast, and when he replied "Honey Nut Cheerios and milk" I felt like he was coming around to his old self. After we ate Patrick got up and walked around the Unit. He is still pretty weak from being in bed so long, but he made two laps before he gave out. He asked me to go find him a wheelchair so we could go on a stroll. I tracked one down in the lobby, brought it up to the 8th floor, picked Patrick up and we went to the first floor and then outside. Patrick was wearing his hospital gown, pajama pants, grey no-skid socks, and his prayer shawl. It was a very pretty day - a little cool but beautiful. We walked the length of the hospital and stopped beside a pretty landscaped area with benches. We sat there for a while and watched two shiny black birds. They were flying, squawking, and fighting. They would strut around each other between the red salvia and yellow marigolds and take turns fluffing up their feathers to show some unseen Ms. Black Bird who was the baddest bird on the block. They were very entertaining for a while, then flew away, and since our free show was over, we walked around some more. Patrick's head started to hurt, so we came back to the room, and he laid down for a little while. I sat down with all intensions of getting some work done, but the next thing I remember was my cell phone ringing in my jacket pocket. The first call was Rebecca. I told myself I would call her back, and before I could get my eyes closed good it rang again. I didn't even look to see who it was and turned it off.

I have learned why people that are receiving treatment in a hospital are called patients - you must have great deals of it to take care of said patients. Patrick's pain was causing him to be very short with me, and it had started wearing me thin. I was doing my best to encourage him and help him out, but I think he had developed what we refer to as "The Nat* Syndrome." We had a friend named Nat*, and there for a while it seemed that it was ALWAYS something. It got to the point where no matter what came out of her mouth it was irritating. I mean she could have said "Here is a golden goose carrying a $100 bill" and we would have told her where she, her goose and her money could go. It seemed like no matter what I said or did, it was the wrong thing. If I asked if needed help I was being a nag. If I asked him if he wanted something, I was bothering him. "Are you sure?" was the ultimate irritation. After feeling a little hurt, I told him that I was doing all I knew to do to be there for him, and that I didn't know what else to do. He could tell hat I was hurt, and after he got settled back into the bed, he slid all the way over and just patted the bed. I sat down and he pulled me close. There was the Patrick I knew.

I spent a little while looking at airline ticket prices for next week in hopes that we may be able to come back early. I was checking out Priceline for cheap tickets. Then we got a knock at the door. We got a second visit from Dr. Levine. He said he just wanted to stop by and double check on how Patrick was doing. He looked at the drain sites and said that Patrick looked great. He asked Patrick about his pain, and he told Dr. Levine that he thought that part of the pain he was having was because he has been grinding his teeth which is causing his TMJ to act up. He recommended we run out and get a mouth guard, and that should help some. I asked him some questions about restrictions for Patrick when he leaves, like when he could get his head wet, should he cover his head while it is healing and if so with what, and that sort of thing. He said that the pathology reports from the tissue they removed from Patrick's dura would be back soon. "As a matter of fact, let me go check and see if it is in the computer yet." He walked out of the room, and when he came back in he shut the door behind him. My heart stopped. "Well the labs are back, and what was on your dura was tumor. I know that isn't what we wanted to hear." We both looked like we had been kicked in the stomach. I can't really remember who asked or what exactly was said but the gist of the question was "What's next?" Dr. Levine said that we would need to see an oncologist in the Head & Neck center and then go from there. He said that surgically he has taken a very aggressive approach, and he encourage that we continue to do that. He said that if chemo is on the table, he would go for it. He said that Patrick has done so well because we have kept such a positive attitude, and we needed to keep that up.

After he left the room, I sat on the end of the bed and rubbed Patrick's leg. I told him that we would just take it one day at a time, and that we would get through this. We made it through last year, and we can do it again. I wanted to say something poignant that would bolster his spirits, but nothing came. I have heard "I wish I knew what to say or do." from many loved ones over the last two years, and I tell them "There isn't anything to say, but please do keep us in your prayers." I suppose I should tell myself that. "Erin, there is nothing to say to Patrick or yourself. Just pray." We went on another walk/wheel around the hospital, and when we got back to the room Patrick asked me if I would go ahead and go get his mouth guard. CVS is about a mile one way from the hospital. "You don't want to walk down there in the dark, so go ahead and go." I don't know if it was to get me out of the room so he could absorb the news alone, but I picked up my bag, gave him a kiss and hit the street. I called my mom and cried, called Becca and cried, called Leigh Ann, but she didn't pick up, called Krista and cried, called Michelle and cried. By the time I talked to Denise I was a hot mess, both literally and figuratively. Keep in mind that I am walking the streets of downtown Houston during all of this. When I was walking and talking with Denise, I walked past a cafe that had an outdoor seating area and sat down. Denise prayed with me over the phone, and I cried some more. I hadn't cried like that in a long time. While in the drug store I tried not to make eye contact with anyone. When I got to the check out counter I pretended to be on my phone so that the cashier wouldn't ask me "Honey, are you ok?" On the way back Lisa called. (Denise had called her to tell her the update on Patrick.) She said that as soon as Denise told her she thought of Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." My practical brain knows that when we are done with this mess our family will be stronger and closer. That we will have a powerful testimony. That hardships are the blessings that no man wants. Unfortunately my practical brain has taken a hiatus, and the brain that is left is freaking out.

By the time I got back to the hospital I had pulled myself together a little. I had stopped crying long enough that I could pass my red face off to being hot and not being hystercial. When I got up to the 8th floor I ducked into one of the bathrooms, looked in the mirror (yikes!), washed my face, and went back to Patrick's bedside. I ordered us something to eat. Eating was the last thing I wanted to do, but I knew Patrick had to eat and he wouldn't if I wasn't. I pushed some tuna salad around on my plate, and then I got in the bed with Patrick, and we watched a movie. Two grown people in a twin sized hospital bed is a tight squeeze, but that is just what I needed - a tight squeeze. We watched "Precious." (It is an incredible film. It is not one for the faint of heart. It is raw and in some places hard to watch. It deserved every sing award that it received and then some.)

After the movie we sat on the bed and listened to some music. I have had his wedding ring on a necklace since he went into surgery. I took it off of the chain and slipped it back on his finger. I have had to take it off more times than I would like, but every time I put it back on I think about our wedding and the vows we made. I, Erin, take you Patrick, to be my wedded husband, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part. Six years ago when I said them I had no clue that we were destined to walk this path. I think about them I think of the affirmations that they hold. To have and to hold. Sometimes that is all we can do right now. For better for worse Ok right now it is worse. For richer for poorer. We are both blessed with jobs. In sickness and in health. We have this one down for sure. To love and to cherish. Him being sick makes me love and cherish every second with him and Miss Sassy Pants Cameron. From this day forward. It has been nearly 6 years since I said it the first time, and I said it to myself again tonight. Until death do us part. When we are both old and gray and pushing 100. Some people have entire ceremonies to have that experience. Mine was without a word on a hospital bed 1,000 miles from home. I was in a pair of jeans that need to be washed, my last clean shirt, and my hair in a pony tail that had been slept on. Patrick was the one wearing the gown this time. It was stained with blood from where they had removed his drains and accessorized with a silver line of staples, two stitches, an IV in his left arm and bandages on his right. Romantic - not really. Sacred - without a doubt. What is funny is that Patrick had no idea.

We have so many blessings. I am thankful every day for them. Patrick is young and strong. We have a loving supportive family. We have the most wonderful little girl ever born. Our friends are incredible. We are covered in love and prayers. We have faith. One of my favorite authors Kahil Gibran wrote that "faith is the oasis of the heart." While going through this journey there are two questions that are in a non-stop cycle - "Now what?" and "What's next?" Right now, I don't know the answer to either of these questions so I am going to rest in my oasis until I have some answers.

Silver Linings

2010-04-08T23:31:00.001-04:00

It was a very long few days for Patrick. Tuesday was a pretty good day for us. Patrick had some air trapped between his skin and skull that was causing some problems, so one of the neurosurgeons came in and wrapped his head tightly with gauze. I am officially married to the sheik of Houston. Patrick's dad spent the whole day with us at the hospital. We watched a few movies, and Patrick rested well during the day. Mr. Bill stayed until about 9:30. He was going to have to leave his hotel at 7:30 Wednesday morning to make his plane, so this was the last time we saw him before he left. He prayed with us before he left, and I got a little teary eyed. I haven't cried the whole time I have been here. There have been a few wells of tears, but none of them have escaped. Patrick had just been doing so well. Tuesday night broke that pattern. By about 11:30pm is pain got ahead of his medications, and he was in pretty bad shape. It wasn't until about 3:30am until they were able to get it under control so he got virtually no sleep. He slept as much as he could on Wednesday, but he was still hurting in spite of the meds. His appetite had been up and down, but he did eat some lunch and dinner Wednesday. Thursday morning (like every morning) was filled with the doctors making their rounds first thing. Between 7:00 and 8:30 every morning we get a flurry of doctors, residents, and fellows coming in to check on Patrick. They have all said that he looks great. I agree, but he isn't' convinced. Thursday morning they removed his bandages to reveal his healing incision. Patrick's doctor said that there were between 75 - 100 staples in his scalp, so he looks like he is sporting a zipper. All the doctors said that it looks great, and knowing that it is healing well, I wanted to count the staples. Patrick was having none of that. Because of how bad he feels, he doesn't have very much patience and his since of humor is not quite what it normally is. Around mid-day Thursday his pain was doing better, but his pain medications were making him sick, so he felt bad in a different way. He was able to stand up and walk a little bit which is a big step (no pun intended). The good thing is that every step is a step closer to going home. If things go as planned, he should be discharged over the weekend, appointments next week, and then we can fly home. Patrick will have to come back after a few weeks for post-op evaluations. Depending on what the pathology results are from the abnormal tissue on the dura, chemotherapy may still be on the table. I am just praying that what looked abnormal is just scar tissue from last year's treatment.

If you ask Cameron "What's gonna work?" she will chime in with "TEAMWORK!!" No truer words have been spoken. While in the waiting room during Patrick's surgery, I met a young woman named Michelle. Her husband was having surgery to remove a brain tumor and we were sitting in the same section of the huge waiting area. She and I are about the same age, she has a little boy a few months younger than Cameron, and she had been totally blindsided by her husbands diagnosis (boy do I know that feeling). He was diagnosed in January of this year, and she and her family were just starting their journey with cancer. For those of you that have been following this blog, you know that I started it to put my story out there so that maybe I would be able to help someone that was in a similar situation. When Patrick was diagnosed last year, I couldn't find any resources for women "like me". I work in non-profit and know where to look for support programs, social networks, and the like. The few websites and message boards that I found for wives like me were either ill kept or outdated; so I stopped looking and started writing. We chatted off and on all day. Her husband's surgery was about 4 hours, and as they were leaving she told me where they were going to be - three doors down from Patrick in the ICU. The first few days after surgery were insane, but we managed to exchange a few text messages, and I found her on FaceBook. Her husband was discharged yesterday, and I invited her for coffee before they left. We went to the coffee shop in the lobby, got lattes, and sat and talked. It was so nice to be in the company of someone who I can identify with in such a unique way. I am truly looking forward to getting to know her. She and her husband live very near to Krista's, so before we leave town the four of us are going to get together for dinner. I cant wait, for two reasons. First they are both very interesting people and secondly that will mean Patrick is out of the hospital! That is a win win!

"Every dark cloud has a sliver lining." When taking care of your family when one member has cancer, there are many dark clouds. Having to be 1,000 miles away from home for treatment - dark cloud. Seeing Patrick in pain - dark cloud. Missing Cameron so much my heart physically aches - dark cloud. Trying to get work done by Patrick's bedside while being distracted by nurses coming in and out; monitors beeping; and people in the halls, some laughing, some crying - dark cloud. Felling helpless - dark cloud. In some of these clouds I can quickly identify the silver lining. We are so blessed that we have been able to come all the way Houston for treatment - silver lining. The best hands and minds in cancer treatment are here at MD Anderson - silver lining. I have a job that supports me to allow me to work from the hospital if I can, and if not they understand - sterling silver. Some of the other clouds I'll have to search for their lining. How can someone in so much pain hold a silver lining? Feeling helpless…what could be sliver about that? Your guess is as good as mine. I miss Cameron so much; I can't imagine that there is a silver lining there.

I am sure that will change when I see her when I get home. She is my smiling shining beautiful sliver lining.

Feeling a little less helpless already...

The big day

2010-04-06T00:30:00.003-04:00

We spent Easter morning with Krista's family. We went to church with Krista's parents, and they had a wonderful lunch - roast, rice & gravy, field peas, and squash casserole. After that we went to the airport to pick up Patrick's dad. Patrick was a little on edge to say the least. We picked up his dad, and then there was a long drama about returning the rental which was apparently my fault. I know that his hostile attitude was a product of his stress and worry, so I let most of it slide. I finally did have to say, "Patrick, don't yell at me. This is not my fault, and I am doing the best I can to fix this." I felt pretty bad fussing at him in front of his dad, but I could only let so much go. As soon as we got checked into the hotel, he gave me a sweet hug and apologized for being ugly. We laid in the bed a little while, and then he suggested that we get in the tub. The tubs at the Rotary House Hotel are pretty big, so it was like being in a hot tub without the bubbles. We laid back, relaxed a while, and talked a little. He took off his wedding band, put it on his necklace, and slipped it around my neck. "Hang onto this for me." I brimmed up a little, but I didn't let him see. After a while the water started to cool, so we got out and got dressed for dinner. We met Patrick's dad at the elevator and had dinner at the hotel restaurant. Patrick got a fancy steak, I got a seafood pasta dish, and Mr. Bill got what was arguably the tallest burger I have ever seen. The food was ok, but I would have much preferred to cook Patrick dinner. Pilaue, corn on the cob, fried okra, sliced tomatoes….let me stop. I am hungry already, so let me not make it worse. We laid in bed and watched a movie, a little Reno 911, and then we turned off the light. I laid beside him, kissed him on the back of the head, and and just held him until I fell asleep.

We woke up this morning around 5:00. Amazingly, I slept really well last night. I woke up with a real peace in my heart. I got up, washed my face, brushed my teeth and got dressed. I had planned on taking a shower, but Patrick stayed in there all morning. Sometimes there is nothing that washes your soul like a shower. Since we found out about Patrick's recurrence I have spent many hours in the shower. Standing under the water with my eyes closed and the hot running through my hair and across my face. Sometimes it is the only thing that can wash away the fear and tears. I hope that Patrick felt that way this morning (minus the hair part). We left the room around 5:45, and met Mr. Bill at the elevator. We trekked through the labyrinth of long winding hallways to the surgical check in area. It was filled with people. They all had the same look on their face - exhaustion and worry. I am sure that we were no exception. We checked in and were greeted by a very friendly attendant who gave us paperwork to review and sign. They gave Patrick an arm band with his information on it, and then we sat down. As we finished up the paperwork, a nurse began barking out orders which irritated me. I am a far cry from a morning person, and looking at the faces of the others in the room, I was not alone. "One person with you, follow me, and there will be updates every two hours. We are not going to hunt you down for updates, so if you miss it you will have to wait until the next check in" We walked back, he got undressed, and put on his gown. We called Cameron, and after he talked to her he had a few tears in his eyes. I went to wipe them away, but he brushed them off before I got the chance. I stepped out to the waiting room to get Mr. Bill so he could visit with Patrick a while. I went back in, gave him a kiss, and I watched them roll him away.

We got updates every two hours or so. Mr. Bill and I sat in a very busy waiting room. We talked, read, napped, and waited on our updates. At the first update we found out that they hadn't made the first incision until nearly 8:45, so that 10 hours didn't truly start until then. They said that his vitals were good, he was stable and doing well. Mr. Bill and I had an early lunch seeing that we had not had breakfast. By 11:30 I was starving. I took Mr. Bill's order - Philly cheese steak and a Coke. I had veggie stir fry with extra kick. As I was getting orders, I mentioned that I was fasting sodas until Patrick got out of surgery. I have been fasting them since we found out that there was abnormal tissue. I believe in prayer and fasting. Fasting isn't only about giving something up, but it is to spend that time when you would be eating/drinking/doing whatever it is that you are fasting praying for the person you are fasting for. I think a lot of times people forget that part. I haven't had my Coke yet, but I have a McD's Coke with extra ice in my very near future. Our 12:00 update was pretty much the same. Stable, vitals are strong, and they are working on him. After that update, Mr. Bill went to his hotel to check in, and I pulled out my computer to work on some work stuff.

Our 2:00 update was closer to 2:30, and they told me that the doctor would like to see you. It was still early, so I had a wash of emotions. It was the feeling I got as a kid when I was called to the principles office with no idea why. There is the fear of "What have I done that I didn't realize I have been busted for?" and then the excitement of "Maybe I was just selected as student of the month." I went into the consultation room just down the hall from the massive waiting room. The rooms are pretty unremarkable. A few chairs with fabric that reminds me of a … well hospital. Blue, green, brown, and very ugly. Dr. Kupferman came in and delivered his update - they were all but done and just closing him up. I could hardly believe it! Ten hours had melted into 6! He said that they had taken out the bone at the base of his skull, the irradiated tissue in his sinus, and a portion of the dura (the sack that holds the brain). He said that there was some tissue on the dura looked abnormal. He said it may be just some damaged tissue from last year or it may be cancer. They wouldn't know for sure until they got the pathology results, and that would take a few days. They took a very aggressive approach with very wide margins (Margins are the amounts of healthy tissue that they remove around the cancerous tissue). Depending on the results, Patrick may have to have chemo. My brain started to run with that, but I had to stop myself. My grandmother said that you can only eat an elephant one bite at a time, and I was about to take more than a mouthful. He said that Dr. Levine would be out to talk with me as soon as he finished closing the incision. About a half hour later Dr. Levine came out and said that Patrick was doing well and they were taking him to the PAC unit (Post Anesthesia Care) He assured me that they had removed everything that looked abnormal and then some. I can't remember which one of them told me this, but his recovery time line is: two days in ICU, 5 or 6 more days in the hospital, a week of doing as little as he can, having his staples out next Friday, and then we can go HOME! He will have to come back in a few weeks for follow ups, and we will go from there.

After much waiting, we were allowed back to see him around 6:00pm. Mr. Bill and I walked back to the PAC unit holding each other's hand and both holding our breath. I didn't know what to expect. Both of his doctors told me that he "won't look as bad as you think he might." I thought he would look like he got hit in the face by a baseball bat. I mean, they virtually cut his face off, took out his forehead, dug around, and then patched it all back together. It was so wonderful seeing him. He looked incredible. He had a thin line of bandages from ear to ear across the top of his head and drains on either side of his head. They look like really big veins that run up his brow. They come out of his skin at the top of his head. He also has packing in his nose that sticks out of his nostrils some, but he wasn't swollen or bruised. I'm sure that will come, but it was such a relief to see how great he looked. I just smiled and smiled. Other than the drains that look like dog ears hanging from the top of his head, he has an IV in each arm and an arterial line in his right hand. It is there to get a accurate blood pressure reading. Last time he had surgery here, they had a little bit of an issue stabilizing his pressure, so they wanted to stay on top of it. Patrick seemed in good spirits, and not in horrible pain. He was extremely groggy, and a few times he trailed off in mid sentence, but all and all he was doing wonderfully.

After more waiting, they took him back for a CT scan and then it was off to the ICU Step down unit. It is where they send you when you need more than a regular room, but you don't need one nurse per person. Mr. Bill and I gathered our things and headed off to the 8th floor to wait even more. We had to wait for him to get transported up to his room and settled in. The two of us went into the ICU waiting area which is more like a waiting closet. There was a small round table with puzzle pieces spread across the top. I sat at the table and Mr Bill sat across from me at a chair beside the wall. I made a few phone calls, and as I was talking I put a piece or two together. After I got off the phone I told Mr. Bill how lousy I am at puzzles. After a little tinkering, he came to the table, and we spend about 20 minutes working on putting some of it together. It was a picture of a Christmas teddy bear in front of a huge pile of gifts and a tree. To say the least this was a far cry from Cameron's Abby Cadabby puzzle. It was fun. We chatted and before it was over we had put together a good section of the top of the puzzle. I was impressed with our puzzle skills. I hit a wall of puzzling, and so I went up to the nurses station to see how much longer it would be before I could see Patrick, and she said that I was welcome to go ahead back and see him. He still looked really good. Weak eyed, but still wonderful. Patrick can't pick his head up more than 30 degrees, so his neck and back get very stiff and sore, so Mr. Bill and I rubbed his neck and adjusted his pillow until around 9:00. Patrick really wanted to talk with Cameron, so we called the house, and she was still up. She shouted "Hey Daddy!! I love you Daddy!" Patrick told her that he would be home soon, and they would watch cartoons together when he got back. Then we called Patrick's mom and he talked with her for just a little while. Patrick's voice was getting weak, and he was starting to hurt some. The nurse came in and gave Patrick something for his pain, and he started to drift a little. Mr. Bill had to take a shuttle back to his hotel. Right before he left I went downstairs to get something to eat, but the cafeteria was closed. There is a little 24 hour snack bar, so I got a peach smoothie and a blueberry scone. The cornerstones of all well balanced dinners. I came back up, and we said our goodbyes. I gave Mr. Bill a long hug. I know I needed it. Not as long as we thought, but still an incredibly long day.

Now I am in the ICU unit with Patrick. He is asleep, full of meds and comfortable. He is underneath the prayer shawl that Poplar Hill Church made him. He has so many people praying for him. He is covered in prayer in spirit and in body. The rooms are incredibly cold. It is shocking how cold they are. I have on a pair of leggings, a long sleeved shirt, socks, and a purple velvet jogging suit. I am underneath a bright blue Snuggie and two hospital blankets. I can feel my toes. I hope that it keeps me warm through the night, because it is going to be a long one. Mary or night nurse is so nice. She is from India, and her last name is about 17 letters, most of which are consonants. I asked her how to say it, and it rolled off of her tongue like honey. I wouldn't be able to repeat it if my life depended on it. She is in and out checking his IVs, O2 stats, BP, and giving him various medications. I feel like I can rest now. I know that all day he has been in the best hands in the country, and arguably the world. His surgeons have countless hours in the OR, and brain surgery is just another day at the office, but now he is in mine (with my posse of RNs). It may not be clinically better, but I feel like I can take care of him like nobody else can.

I know that sounds silly, but that's ok with me. I love him, and love, like time heals all wounds.

A stranger in a strange land.

2010-04-02T22:37:00.001-04:00

Walking back in MD Anderson today was just as hard as I thought it would be. As soon as we cleared the threshold from the parking garage I got a huge lump in my throat and a knot in my stomach.

We arrived at the hospital at around 9:00am, and stopped at the coffee shop in the "The Aquarium." The Aquarium is the what they call the main lobby, and it is filled with beautiful fishtanks, comfy chairs, tables, and a few recliners. There are always children. Unless children are patients, there are a number of places in the hospital that they are not allowed. Cameron and I spent lots of time when she was here watching the gold, silver, sunshine yellow and bright blue fish school around the plants. I ordered a small Mayan Mocha, a cheese danish, and water. While we were sitting and drinking our coffee, one of Patrick's radiation nurses walks by. "Hey! How are you? It's so good to see you." she says with a smile. Patrick tells her that unfortunately he is back because the cancer is back, and her face changed like a light switch. "Oh no. I am so sorry." They chatted a while, and then we made our way upstairs for Patrick's meeting with his neurosurgeon, Dr. Levine.

We waited a little while in a room filled to the gills with patients, and then we were called back to a consultation room. In it was a small round table, four chairs, a computer, and a large white board. A tech came in and asked Patrick a few generic questions, took his temperature, and blood pressure. Amazingly we only had to wait about 10 minutes, and Dr. Lavine and a student come into the room. He told us hello, and it struck me that he didn't say "It is good to see you." He asked "How are you?" His omission of the all time cookie cutter greeting screamed truth. It isn't good to see him. It is the exact opposite of good to see him - it is a nightmare. He began to talk about Patrick's surgery and what his plan is. They are going to blitzkrieg his sinus and the base of his skull. Cut him ear to ear not only to have access to his entire sinus, but they will also graft soft tissue from his head to use as patch material. They will take out virtually all of the bone at the base of his skull and part of the dura (the sack the covers the brain). Pretty much all of his sinus tissue will be removed and they will use the tissue they harvest from his scalp to repair the dura and other tissues they remove. As soon as they said "dura" my heart sank. That is as close to the brain as you can get before hitting white matter. He got up and showed us where he planned on making the incisions, the bones they would remove, and how he would put it all back together. He said they may also have to cut along the side of his nose to get even deeper access, but they wouldn't be sure of that until they had him in the OR. He inundated us with possible risks: headaches, spinal fluid leaks, vision problems like double vision or even blindness, bleeding, blood clots, stroke, coma, seizures, and death. I know that in order to sign an informed consent they are required to tell you all of those things, and the risks are hard to hear no matter how slim the chances. He said that this may be the end of the battle, or the cancer may come back. There was really no way to tell definitively. It did come back quickly inspire of the radiation, so they were going to removed everything and take huge margins. He did say that in hindsight he would have still done the surgery the same way before. It came back, and this is a whole new ball game. Patrick asked how long the surgery would take and he would be out of work. Dr. Levine said that they had scheduled it for 10 hours, but it may not take quite that long. He said that some people stay out a few weeks, but others go back to work sooner so they have distraction. He said that Patrick did need to be very informed about his ST & LT disability insurance programs just to be sure that we know what our financial situation was. He mentioned that we needed to be sure to plan way ahead - just in case he does have to go on LTD. He asked if I had questions, so I asked why the cancer didn't really show up on Patrick's scans. He said that after surgery and radiation, tissue is very different, and sometimes things are not very clear on MRIs and CT scans. He reassured me that if the cancer had metastasized somewhere else it would have showed up. That made me feel some better. I didn't really know what else to ask. I am sure when I get in the bed tonight I'll come up with a million. I'll be sure to write them down and have them ready for Monday.

After that appointment we went outside and sat on a park bench in front of the building. There were purple iriss in bloom in front of bright pink azaleas. The breeze was blowing and the sun was out - beautiful. We just sat down, and it reminded me of the afternoon we spent in the yard. We didn't really talk, we just sat together and enjoyed the sunshine before his next appointment.

Next we met with Dr. Kupferman. Dr. Kupferman is Patrick's Head and Neck surgeon. I thought that he was the lead surgeon on Patrick's case, but Dr. Lavine his neurosurgeon is going to be in charge this time. The meeting with Dr. K was pretty short. He talked about his role in the surgery as a support person for Dr. Levine, and that he would be doing some of the reconstruction. He said talked in a little more detail the risks involved with the incision on the side of his nose. He said that the scars from both the scalp incision and the one by his nose would heal very well, and that they would more than likely not be very noticeable at all, which I think made Patrick feel a little better. We signed more consent forms, and they asked if he had blood banked for him for his surgery. We didn't even know that was an option. I of course ask if I could go give blood right then, and have it for him just in case. (We don't have the same blood type. Patrick is A+ and I am O+, but O is the universal donor, I was ready for the needle) They told me that even if I gave blood right then, it wouldn't be processed and ready by Monday. I used to give blood regularly, but I haven't in a long time. I decided not to give after my seizures got under such good control. I figured I wouldn't rock the boat. There were more forms, and we were off to anesthesia consult.

Just like last year, anesthesia was packed and loud. We hadn't waited more than 15 or 20 min. all day - until then. After about 45 min of waiting, we were taken back and met with the anesthesiologist. He asked Patrick some generic questions about drug allergies and that type of thing. They gave us the short rundown of possible complications on anesthesia, and that was it. The day at the hospital was done. We stopped for a quick bite to eat, and then we went back to Krista's for a nap. Before bed we even got to video call home and talk to Cameron. It was so wonderful to see her. She sang us Jesus Loves Me, and she told us the recipe for grape drink - "sugar, purple, and water." It has only been a few days, but I miss her so much. Patrick does too.

MD Anderson Cancer Center is like an enormous melting pot. There are people like Patrick that don't look sick at all, and then there are those that look as weak as water. There children with shiny little heads running laughing and playing around the fishtanks in the lobby; and there are women wearing colorful headscarves. Today there was a particular man that caught my eye. He had deeply sunken eyes, slightly jaundiced skin, and he shuffled more than walked. He escorted his IV stand which hung heavy with bags of fluids through the busy lobby. He was tall and thin, and his hair was patchy at best. Don't ask me why, but he reminded me of the apple tree in my mother's yard. When I was 7 years old Hurricane Hugo nearly pulled the tree out of the ground. It lost a number of branches, and it still leans to the left, but after a few years of healing, it started bearing fruit and has for 20 years. This man was that apple tree. His branches were weak from the storm he was battling. His bark was tattered, and his leaves had long since let go, but he was still standing. I am sure it may be a while before he is able to bloom and bear fruit, but he is still standing. I only saw him for a few moments, and we never even made eye contact, but he will stay with me.

The old, the young, the weak, the strong … all in the battle of and for their lives. In spite of the many weeks I spent roaming this building last year, I still feel like a stranger in a strange land.

The Plan

2010-04-02T10:27:00.000-04:00

As I write this I am sitting at the foot of the guest bed at one of my dearest friend Krista's house in a very comfy chair with my feet propped up on my suitcase. Since New York things haven't slowed down for a second.

I didn't get a real update on "the Plan" until Monday (March 22nd). I got to work Monday with only a million things to do. I jump in head first and before I know it, I looked at the clock and it was 4:30. Time flies when your having fun (or when you are eyeballs deep after only two days out of the office). I picked up Cameron from school, and I just wanted to squeeze her to death! She was playing with her best friend Alyssa, and she didn't see me standing at the door. I didn't say a word and just watched them play. Then she caught my eye and she yells "Momma!" and runs across the room toward me. She is so amazing for me. That two year old 22 lb. stink bug can make my day wonderful, no matter what the circumstances are. What a little life changer. I loved my life of before Cameron, but now I cant imagine life without her.

As I pull into my driveway I can hear my leather sofa calling to me, but I managed to keep myself away from that chocolate oasis of laziness, and I hit the kitchen. I didn't even take the time to change out of my work clothes. I put on an apron, pulled back my hair into a loose bun, and I started dinner. I highly recommend cooking dinner in nice work clothes with a pretty apron. It makes me feel like what I envisioned my grandmother when she was a young woman in the late 50s. I can see her cooking dinner for the family in classic pumps, a lovely spring dress, and a sunshine yellow handmade apron detailed with eyelet lace. My apron was ordered online, and my dress is from Ross, but I still feel lovely. Sometimes you have to fake it until you make it. Patrick got home, and I had dinner mostly ready. He came in the kitchen and laughed at me a little for wearing an apron. I just smiled and turned back to the corn, and he came up behind me and kissed me on the neck. "Thank you for cooking dinner." It was so sweet and genuine that I got a little choked up. "Anytime honey."

Over oven fried chicken, corn, green beans a crescent rolls he filled me in on all of the details from his trip. The MRIs and other scans didn't show the cancer, but when they scoped up his nose they could see it. It was very small, but they wanted to get it out as soon as possible to make sure that it doesn't spread. The results are a double edged sword for me. I am so thrilled that it is so small that the scans are not even able to see them, but the flip side to that is well what if there are other places that have small tumors that the scans aren't picking up? The "What if" game can drive you crazy, so one thing that I have gotten a lot better at since the first time I heard "I have cancer" is trying to go on only the information I have in hand, and not the plethora of information on Google. Nope. Not going there. Patrick's doctors decided against chemotherapy which was a huge relief for me. I am willing to do whatever has to be done to remove this intruder from our life, but I am so glad that Patrick isn't going to have to deal with months and months of from that nightmare. The bad news is that they are not going to be able to do Patrick's surgery endoscopicly through his nostrils like they did last time. Irradiated tissue behaves much differently than normal tissue, and it is at more risk for bleeding and it doesn't always heal well. Due to that, they are going to have to do the surgery cranio-facially. They will pretty much cut him ear to ear along his "hairline," pull down the skin on the front part of his face, cut through the bones in his forehead, and work from there. The tumor is almost dead center of his face about middle way back in his sinus. Now I love watching medical shows on TV. I can watch a show where they are performing open heart surgery and eat spaghetti at the same time. That being said, take my advice; don't Google cranio-facial surgery. I know that is like saying "Don't think about red." So when you click open a new window to look it up, be forewarned. It is VERY invasive. Anytime a procedures description includes "peel down the skin of the face" my entire body shudders. Amazingly they said that the recovery time isn't long. One week in the hospital and then a second week in Houston for follow ups. Then the very shocking news. "They may do the surgery as early as Monday [the 29]." WHAT? I'm not really sure why, but I was shocked to hear that date. I think it mostly stemmed from the fact that I had been out of work for 2 days, and that would leave 4 work days to get ready for 2 weeks more weeks of being out. Very selfish I know. We hadn't gotten the taxes done, I would have to prepare the house for Momma to come take care of Cameron, and ….. well lots of things. Even with my super ninja Momma skills, that would be pretty hard to pull off. Patrick was a little concered about it being so soon, but I put my brain into "you have 4 days sister" mode. I work like a dog until Thursday when MD Anderson called, and they decided to schedule Patrick's surgery for the following Monday (April 5th).

I worked hard on getting things lined up, Patrick did the taxes and we bought plane tickets for us and Patrick's dad. Mr. Bill (and Patrick's uncle) drove out to TX last year when Patrick had his first surgery. I didn't think that anyone was going to be able to come, and I thought I was ready to do it alone. I was wrong. Patrick was in surgery for 8 hours last year, and the waiting was excruciating. Mr. Bill was right there. He helped me roll Patrick from side to side and massage his back when Patrick was having horrible back spasms. We prayed together, cried together, and laughed together. If not for him, I don't know that I would have been able to hold my head up. I will never be able to express to him how much it meant to me that he was there with me. He is a wonderful man. I am so glad he is going to be with me again this time.

Baby sitter, check. Meeting at works covered, check. Laundry, check. I even packed my Snuggie. Yes I said it, Snuggie. I was the first person in line to make fun of the Snuggie. I mean it is a bathrobe worn backwards. Only in America can people make millions on a big piece of fleece with arms. What a crock! Then I got one for Christmas, and I love it. It is everything it says it is. Warm, snugglely, and you can work on your computer without leaving anything uncovered. MD Anderson has to be one of the coldest places I have ever been. Last year when Patrick was in the ICU, it was so cold that even under 5 hospital blankets I thought I was going to freeze to death. My suitcase looks like I am going to Antarctica and not Texas.

Logistically we were ready, but getting ready emotionally is going to much more challenging. Let's hope those ninja skills stay strong.

The calm before the storm

2010-03-26T20:47:00.003-04:00

My sisters and I have been planning a trip to New York for a few months now to celebrate Leigh Ann's birthday. We all love Tim Burton's artwork, and he had an exhibit at the Modern Museum of Art that we were all dying to see. We found tickets, reserved spaces at a hostel, and started packing. Our excitement about our trip had been growing like kudzu as our trip got closer and closer. Then we got word that Patrick's cancer was back. Patrick's appointments were scheduled, and it was the same week as the trip that the girls had been looking so forward to. I of course planned on skipping my trip with Becca and Leigh Ann so I could be with Patrick. I talked with him about arrangements, and he insisted that I go with the girls. He knew how much we were all looking forward to the trip, I wouldn't be able to get any of the money back, and at the hospital I was just going to have to sit around and wait for hours on end. He also said that if he was going to have to have chemo, this trip would be the last of the going and doing for a while. I felt so guilty that that I was going to be in the Big Apple having fun with my sisters while he was being poked, prodded, and scanned; but he was right.

Patrick's schedule was three day regimented blitz - fly into Houston on Tuesday, tests from 7:30am until 10:00pm on Wednesday, meet with his doctor Thursday morning, and fly home Thursday night. Mine was just the opposite - fly to NYC on Thursday, go to the MOMA on Friday, and do whatever else we wanted until we had to be on the plane on Sunday.

When I headed off to work on Tuesday, I kissed Patrick, squeezed him tightly, and told him how much I loved him. "Call me along and along so I don't worry." (and yes, that was my mother's voice coming out of my mouth). There was something I wanted to tell him, but for the life of me I couldn't remember what it was. I woke up the middle of the night and thought "Don't forget to remind him of that." Cameron gives him lots of love, and she and I load up in the car and head off. I drop her off, and then it hits me "Don't forget to get your cell phone charger." I call him to remind him, but he was already on the road. I told him to email or txt me when he got to Houston so he wouldn't use up his cell battery just in case he needed it.

Cameron and I spent Tuesday night doing girly things like packing and painting toe nails. After choir practice on Wednesday night, Cameron and I went over and picked up Becca, and we drove down to Momma's house to spend the night. (Leigh Ann met us at Momma's Thursday morning) Our flight was out of Myrtle Beach, and with Patrick gone, Cameron got to spend four days with Grandma and Grandaddy.

As we loaded up the car on Thursday morning, I couldn't help but have another twinge of guilt. Right then Patrick was more than likely sitting in a waiting room with a cotton ball taped to his arm with nobody to talk to, and I'm off to take a bite out of the Big Apple.

The flight went by very quickly. We ordered a cocktail, and I think it was just as much for the novelty than anything else. As many times as I have flown, I have never had a drink on a plane! Before we knew it we landed and headed off to our hostel. I enjoy being somewhere that public transportation is the norm. Only in the South is it uncool to take a bus or train. We got there and checked in, and what we found was not at all what we expected. We thought it was going to be three to a room which was wonderful. We found that it was really 8 to a room (3 bunk beds and a loft area) and it was mixed gender. None of this was a problem for me. All I needed was a place to sleep and keep my stuff. Becca and I had the top and bottom of one bunk receptively and Leigh Ann had the top bunk of the adjacent bed. We got settled in, and found a great Thai restaurant in Hell's Kitchen. We were all so beat that we went back and got snuggled in. The mattresses were reminiscent of a Trisket, but even that was no problem. I was in NY with two of my favorite people.

I woke up the next morning to a horrific sight. Everyone in our room was between their mid 20s to mid 30s, and mostly they from overseas. They were all beautiful people with charming accents, and interesting stories on what brought them to New York - then there was Robert. Robert was probably in his late 50s, and modesty wasn't in his rolodex. I open my eyes to see a man who's complexion reminded me of a raw Thanksgiving turkey. He was wearing nothing but very ill-fitting white briefs. He was sitting on the bunk directly across from me, and there were his man bits for the whole world to see. I was SO shocked! I rolled over just as fast as I could. I was embarrassed for me and him, but he didn't seem to mind a bit. Now if Gian, the gorgeous Italian sleeping under Leigh Ann, was half dressed, I might have said thank you; but I was looking for something to poke out my minds eye with. You (and by you I mean Rebecca) may think that is mean, but it's true.

After getting up and dressed, we headed to the MOMA for the exhibit. It was absolutely wonderful - creative, dark, revealing, and very thought provoking. (Good call Leigh Ann) After that we walked down 5th Ave and did a little shopping, and then it was off to Times Square. We looked and looked, but no sight of the Naked Cowboy. We had all intentions on taking our clothes off and taking our picture with him dressed in our new pretty underwear. He may haven't been there, or I may have been blocking out even the thought of man in tighty whities.

Saturday was filled with walking. We went to the Fashion Institute Museum, Mood Fabrics (where we all bought buttons galore), 30 Rockafeller Center where we had dirty water hotdogs for lunch, Chinatown, and we took the Staten Island Ferry at sunset to see the Statue of Liberty. It was totally breath taking. We had planed to head off to Little Italy for some authentic Italian food, but we ended up in the hood. And by in the hood, I mean we were afraid kind of hood. Once we passed two girly bars and a homeless shelter, we knew we had to get out of Dodge. Leigh Ann started to break out the map, and Becca stops her abruptly; "No Leigh Ann. They will know we don't know where we are going. There is the Empire State Building. Our hostel is on the other side of that. Walk. FAST." We hustle off as fast as we can trying hard not to look like gazelles around a waterhole full of alligators. We land in Soho, and found this great little Mexican place. We knew it was our kind of place when we saw that there was a little Chihuahua wagging it's tail at the door. Fish tacos, AMAZING guacamole, and stout margaritas completely erased the panic of Little Italy. After asking Becca's permission, we take out the map and head back to the hostel.

We had planned to go back to Rockafeller center to ice skate and to Central Park on Sunday morning. When I woke up the only thing I wanted to do was eat something and rest. It seemed like Becca and Leigh Ann felt the same way, but none of us wanted to admit it out loud at the risk of being a wet blanket on the end of the trip. As we packed up, Leigh Ann took the leap and said "Will you be totally disappointed if we don't go to the park?" Becca and I both let out a huge sigh of relief, and said "Oh my Lord, I am so glad you said that because I don't want to go either!" We set our agenda for the day. Check out, go to the airport, and hang out there for several hours (and by hang out, I mean sleep).

Becca got directions on how to get from the hostel to the airport on the cheap, and we headed off to grab brunch. We decided we would just walk toward the subway until we found something interesting. We stopped at this very cool place called the Cosmic Diner (It's on 8th Ave around 40th I think). Visualize what you see as a NY diner, this place was it - the sounds, smells, and even the waitresses that seemed a little distracted. We decided we were going to get a "New York breakfast." We asked the waitress and she said, "Well, I'm not sure really." Now if someone asked me what a traditional Southern breakfast I can give you a menu in half a second (grits with butter, eggs, bacon, country ham, and blazing hot coffee). Since there isn't a NYC breakfast, we decided to get the most Yankee food on the menu. Corned beef hash and sunny side up eggs for me, bagels and lox for Becca, and Leigh Ann got this fancy omelet with spinach. The energy in the place was great, but everyone seemed to be in a hurry. Leigh Ann kept saying "I feel like they want us to hurry up and leave because we aren't moving fast enough." We stuck true to our roots, and like true Southern ladies, we finished our meal slowly so we could enjoy it, and then we set out again.

We got to the subway station only to find that the train that we needed to take was not running. We had been told by the people at the hostel that taking a cab would be a pretty expensive way to get to the airport. We were tired, our feet hurt, our bags were getting heavier by the second. By the time I flagged down a cab, the driver could have asked for my left kidney, and I would have gladly given it to him. We were all just ready to be back in the land of sweet tea, magnolias and Spanish moss. To make a long story a little shorter (Now that I have written a mile), we hung out in the airport for a few hours of sleeping, reading, and more sleeping; then we loaded on the plane and flew home.

We got to Momma's about 10:00pm where she was waiting with chicken and dumplings and homemade blueberry cobbler. After filling up on REAL food, we hit the road. I got home about 3:00am, got Cameron out of her car seat without waking her up, quietly came in the house, and we crawled in the bed with Patrick. And just like the old adage says, there is no place like home.

Growing up in costal SC, I have been through many hurricanes over the years, and there is aways a calm before the storm. Nighttime hurricanes are always the most memorable. At dusk the sky looks like a negative, there are no sounds, and there is an electric feeling in the air. You can watch the sky and see the squalls roll in. I couldn't have imagined that the city that never sleeps would be that calm, but it was. Nighttime hurricanes are the scariest because you can't see anything. You can hear the rain beating on the windows, the trees snapping in the woods, and sometimes you will hear the droning roar of a tornado, but you cant see what is in store. All you can do is prepare - fill the tubs and pots with water, tape up the windows, bring in the animals, pull out the flashlights and have the hurricane lanterns filled with oil with their wicks trimmed.

The air is still electric as we wait to hear what the treatment plan will be. I am taping up windows, filling the tubs, and trying to keep my lamp trimmed and burning.

I can see the squalls on the horizon…

Stilettos and a smoking gun

2010-03-13T19:57:00.006-05:00

I grew up in a small town where nearly everyone had guns. Hunters dressed in camouflage from head to toe with orange vests were extremely common place. It was part of our small town culture. They even offered a hunter's safety program in my high school PE class. At the end of the semester someone from the Department of Natural Resources came out with a sling on the back of his truck, and the class spent an entire period shooting clay pidgins with shotgun. My first time shooting a gun, I hit 8 out of 10! (All the games of "Duck Hunt" on the original Nintendo paid off) That was more than 10 years ago.

In spite of the many gun owners in my life, when I hear people talking about gun ownership I have visions of NRA rallies where everyone seems to be angry that the government doesn't want them to carry guns that could stop a tank. The argument between "we have the right to bear arms" vs. "nothing justifies you carrying a small antimissile assault weapon" will be a never ending debate right along with border control, the Palestinian/Israeli conflict, and paper or plastic.

When we found out that Patrick's cancer was back, I was filled with so many emotions. The two major ones being fear and anger. I pride myself not being a scaredy cat. I wanted pet spiders as a kid. I would be the first one in line in class to hold the huge snake when the other kids were in tears; and jumping off of a high branch into the darkest water you have ever seen was second nature. (Now trap me in a room with Rush Limbaugh, and that would strike terror into my heart) But the fear of watching Patrick have to go through what he went through last year was terrifying. The possibility that he might loose his job. The fear that he might have to have God awful treatment that would heal him by nearly killing him. The fear that he ….. Well let's just leave it that there is a lot if fear in my heart. Then comes the anger. Not the anger that I am used to. I have been known to cuss the person that cuts me off in traffic, or to risk getting into a fight when I see someone being taken advantage of. Even the anger I felt the time I was fired from a great job because I did the right thing pales in comparison. No, this is rage. How dare this happen again. How dare this unwelcome intruder invade our family again. Thanks to my love affair with the thesaurus and a liberal arts education I could insert a plethora of expletives here, but seeing that there may be mixed company reading this, I won't.

It doesn't take a rocket scientist to know that bottling up such heated emotions is bad for you physically, emotionally, and spiritually. I was looking for an outlet, when my twin sister asked, "What are you doing Wednesday night?" "I have choir practice. Why?" She said "Erin, you need to skip practice. I want you to come with me. I want to take you to the firing range. I want you to get extra dressed up for work, put on your sexiest black heels, and meet me at Shooter's Choice at 6:30." I rarely miss practice, so I figured I could miss one night. My three sisters (Leigh Ann, Becca, and my sister-in-love Amie) met us there. Wednesday is "Ladies Night" (which absolutely cracks me up that a firing range has a ladies night), and so there is no fee. BYOG or you can rent a gun there. My stepdad gave Becca his gun after she started working at her law firm. They keep a gun at the office, and Becca said that she would like to have one. Seeing that his hasn't used it in nearly 15 years it made perfect sense.

The gun is a 357 magnum single action revolver. It's huge. In order for that gun to be a concealed weapon, Becca would have to put it into a suitcase!

I feel pretty out of place when we get there. Dress, heels, stockings, makeup- the works. Becca is (as always) dressed to kill (pun intended). We pick out a target. There were several options - a blue silhouette, an orange silhouette, and a picture of a guy who resembled the uni-bomber. We both go with blue. She tells the man behind the counter "I need to get a box of ammunition" "Yes mam. Do you want the magnums or .38s." he replies, and as cool as if she was asking for the salt to be passed down the table, she says "I'll have the 38s. They don't kicks as bad as the magnums." We put on our protective glasses and earphones and walk into the firing area. In spite of the headphones, I jump several times as I walked past the people firing. The pops were so loud you could feel them. Becca gives me a quick lesson on the gun, loads it and I pop of the first round. The gun kicked back on me, but not nearly as much as I expected. I had an excited rush of adrenaline, and I giggle a little. I cock the gun again and again and fire off each of the 5 remaining rounds. I wasn't counting, so I cock the gun a seventh time, aim and squeeze the trigger - click. I think the fact that the gun didn't fire shocked me more than if it had. I run my target back to me, and six rounds to the chest. A little low and to the left, but still pretty doggoned good for the first time shooting a handgun. Becca takes her turn, and as she is firing Leigh Ann and Amie arrive. They were both in Becca's "dress code" of sex kitten. We all take turns unloading the gun six rounds at a time. As men walked by, they would stop and talk to us. All of them said "Oh my God! What are you girls shooting?" The four well dressed young professionals were shooting the biggest gun in the place. It was, for lack of a better word, very …. well, sexy.

Before it was over we had gone through two boxes of bullets, and we were all a little breathy. It reminded me of the time in the first grade that Jarrod Cockfield ran around kissing all of the girls on the playground. Every girl reacted the same way "EWW!!" Every girl except for Becca, Amie and me. We chased him down, fussed at him for being an inconsiderate stinky boy, and if I remember correctly, he got a bloody nose. We were strong, independent, empowered non-conformist women well before our time. Leigh Ann, in wonderful big-sister style, taught us well.

I said this all to say, that sometimes release comes in the most unexpected places. Sometimes you have to do WHATEVER it takes to maintain your sanity, There were no candles, and no hot bubble baths Wednesday night. No manicure, or pedicure. It was filled with the smell of gun powder. Tomorrow might just call for some fancy bath salts infused with lemongrass, some yoga, or maybe even some transcendental mediation. The point is, don't feel bad about getting your fear, rage, sadness, or that feeling of overwhelming helplessness out of your system in the way that works best for you in that moment.

I don't….

A stolen sneeze.

2010-03-09T18:18:00.004-05:00

When Becca and I were little, there were very few things that we enjoyed more than stealing each other's sneeze. I would get that tickle in my nose, suck in a deep breath ready for the cleansing explosion, and then "BOO," Becca would round the corner laughing maniacally with her successful mission of driving me crazy. A chase would ensue, and one of us would end up with a bruise. (No fears, Becca got just as good as she gave)

That was how I felt Monday. I made arrangements to work from the oncology center, get up early, and packed up my briefcase and was ready for the day. Patrick and I took separate cars because I had to take Cameron to daycare, and then I had a "lunch date" with my OB/GYN. Of course I catch every red light, little old lady, and "Sunday" driver on the way to drop Cameron off. As I am fastening my seat belt in the parking lot after dropping off fizzle britches, I get a text from Patrick that says "Come on back when you get here, I am in the exam room." I feel super frazzled because I feel late, and I hurry as hard as I can (within the traffic laws). I search for a parking space that in the same zip code as the building, and hustle into the building. Dr. Smith, and Nicole (Dr. Smith's PA) are in the exam room looking very smart in their snow white coats. Patrick is perched on the exam table. Dr. Smith and Patrick were talking about some research that Patrick had done on treatment ideas, and Dr. Smith says well "If it is operable then ...." (Insert squealing tire noise here) "If?" "IF?" If had never even crossed my mind. What are you talking about "If it is operable?" I manage to hit the mute button on the squealing tire sound, and Dr. Smith continues to talk in his super friendly voice. "If it is operable, then it may be surgery alone or surgery and chemotherapy. If it is not operable, then chemo would be the treatment plan because you can't have anymore radiation." Then he says "You will need to get things set up to go back out to TX." No tests? No blood work? No scans? Why in the world would you have us come in for "If...." and "You need to go to TX." I am not sure what his bill rate is, but I could have told Patrick that for free!

I spent my lunch taking Cam to get her shots and then I had my annual. In addition to being very handsome, friendly and funny, Cameron's pediatrician is very efficient. We were in and out of there in no time. Cameron was such a brave little champ. She didn't even cry when they did the finger prick! She impressed Dr. Willard by telling him lots of shapes that we had drawn on the paper on the exam table. He was extremely impressed with the fact that she identified an oval vs. a circle. That's my girl!! He asked how we were doing, and I said fine. Later in the visit, he asked how Patrick was doing, and I welled up a little. I told him about the reoccurrence, and he said he knew something was wrong. "I heard a sigh in that 'fine.'" I didn't cry, but I think it was more that he had good timing on going to get the nurse to give Cameron the shots.

After rushing her back to school, I am off to my doctor for my annual. One thing about my OBGYN is that it takes 3 months to get an appointment, but you are in and out very quickly. Dr. Painter is such a sweetheart. Amazingly my blood pressure was very good. As all ladies know that you have to wear paper "gown" during your appointment Dr. Painter comes in, and she said "How is that baby who isn't a baby anymore?" I brag on how funny, cute, smart, and AWESOME Cameron is. She tells me about her kids, and then she asked how I was. I burst into tears. I didn't just cry; I wept. There I am wrapped up in a paper towel crying my eyes out. I think it took her a little off guard, but after the shock she handed me a tissue (not that I needed one - I was wearing a whole box of them) and told me that she was here if I needed her, and not to hesitate to call her.

I head back to the office feeling pretty defeated. I check my email, return some phone calls, and get ready for Tuesday. I'll have to wait at least a week for answers.

Where is my sneeze?

Then comes the bad news

2010-03-05T18:23:00.002-05:00

After days of not knowing, Patrick called on Thursday and gave me the bad news. His doctor called, and gave him his results. The abnormal spot that he saw was a reoccurrence of his cancer. As Patrick tells me this over the phone, I break out in a cold sweat, get queasy, and my day came to a screeching halt. All I could say was "Honey, its ok, and we will get through this together." He told me that he was about 20 min from Columbia, and he was going to go to his oncologist's office here in Columbia. I asked him if he wanted me to meet him there, and he said that he would be fine and to go on home.

I can't imagine what I looked like. After an I love you, he hung up. My coworker Adelle was on the phone. I just stuck my head in her office, quietly said "I have to leave," and without another word, walked to the car in tears. I held it together until I pulled into Cameron's day care, and hot tears poured down my face. I sat in the parking lot and wept. I don't know how long, but it seemed like forever. It was as though a volcano of emotion had erupted, and the tears felt like rivers of lava pouring down my cheeks burning everything in their path.

I get home, and Patrick is there waiting. I gave him a huge hug, kissed him on the cheek, and told him I loved him. On his way home he had stopped an picked up bubbles for Cameron. He had a blanket by the door, and said "Let's go outside." The three of us, Buster and Eli (our pug children) went outside. Patrick spread out the blanket in the sun, and we blew bubbles. Cameron was playing and laughing without a care in the world. Eli nearly turned somersaults to bite the bubbles out of the air. Cameron's laughter was contagious. She and the dogs played for a while, and Patrick and I just sat in the sun.

We didn't really say anything, just sat. What was there to say? The silence was not uncomfortable. It was more like a collective deep breath to calm our nerves for the next step. With all the emotions, I wanted nothing more than to sit there with my little family and pretend that it was all just a horrible dream. That the worst of my troubles was how I was going to get Cameron to stop dragging Buster around the yard by his ears, and how to keep Eli from drinking the bubble solution. I wished I could have just stayed in that sunny spot in the grass all day. The sun was moving behind the house, and there was a nip in the air, so we left the oasis of blanket in the yard and came inside.

My night was filled with very little sleep. It was in the yard I decided I was going to write, and that was just what I did. I wrote for hours. I looked up and it was nearly 1:00am. Cameron and Patrick were in the bed beside me, and they were both resting so peacefully in the light of my monitor. I watched them sleep for what seemed like hours. I knew that I had to do the same, so I closed my computer, snuggled down beside my family and prayed. Prayed for healing. Prayed for strength. Prayed that I could be the helpmate that Patrick would need. Prayed that I could be the Mom that Cameron will need when Patrick is in his healing process. Prayed that I could somehow keep all of the balls in the air without dropping them.

I just prayed....

The worst part is the waiting - Which idiot said that?

2010-03-04T21:41:00.001-05:00

Normally I am not the kind of person who's emotions totally get the best of them, but this week has been the exception. Tuesday I woke up when Patrick got out of the bed (and that is a little bit of a stretch because in order to "wake up" you must have slept). I laid there and listened to him shower. Cameron was curled up beside me, and I began to cry. I heard the shower turn off, and I wiped my tears and nose on the sleeve of my gown (I know, gross), and I pretended to be asleep while Patrick got dressed. When he kissed me goodbye, I broke down into tears. He gave me a squeeze, and then Cameron woke up and said "No cry Momma. No cry." which made me cry even more! I manage to suck it up long enough to make it to the bathroom. I look at the shower and then the tub and back to the shower. Time for some hydro-thearapy. I run a hot bath, and ease in hoping that when I pulled the drain that my terror would get sucked down with that little cyclone that shows up in the drain right before all of the water is gone - not so lucky.

My co-worker Adelle called as I was on the way to take Cameron to daycare because she was having some computer problems. "How are you this morning?" she asks in the super cheery voice. I just fall apart and sob. I am sure I totally freaked her out. I mean, we have only worked together for a few months, and there I am bawling my eyes out over the phone as Cameron sings "My Name is Stegosaurus" in the backseat. I park at daycare, help Adelle trouble shoot her computer, and then take Cameron into school. I set Cam down, give her a kiss and tell her I love her, and do my best not to make eye contact with any of her teachers. I bump into Phyllis (Cameron's teacher from 12 weeks until she moved up last week), and I start to cry. I just kept telling myself "GET IT TOGETHER ERIN!!" I make it to work and stay choked up most of the morning. Instead of lunch I went home and got BACK in the tub. I filled it so much that the only things sticking out were my nose and knees.

Wednesday I was drowned in work, which was nice because it gave me something else to think about during the day. I was working in Aiken, and I got back to Columbia around 4:30. I went by the house to see if Patrick was home. I knew that if he had gotten bad news he wouldn't have called me while I was on the road, but he would have come home from work. My heart raced as I pulled into my neighborhood, but when I saw an empty driveway, I was overjoyed. I changed out of my work clothes, returned my rental car, and headed across town for choir practice. I was so pleased with myself - I hadn't cried all day. Before practice our choir director asked if anyone had prayer requests and I well up with tears. I am a firm believer in the power of prayer. I think that the Quakers have a wonderful description of what prayer is - Holding one in the Light.

After practice, I drove home. I got home around 8:00. Patrick and Cameron were in our bed. Patrick was nearly asleep and Cameron was perched like a little bird on the end of our bed watching Dora the Explorer, and singing right along. Just from the look on his face, I could tell he hadn't heard anything. I gave him a kiss on the head, Cameron a squeeze, and asked him what that they eaten for dinner. - Pop Tarts. Normally he would have carried a butt cutting for that, but I just kind of laughed under my breath, and rolled with the punches. One night of a frosted strawberry with sprinkles dinner won't kill her :)

I was hoping for a nice long kid free bath to soak my back (which is full of knots and killing me), but no such luck. Cameron heard the bathwater turn on, and she lept off the bed like a gazelle. "Gee in bubble bath! Gee in tub peez!" Who could say no to "peez"? My nice relaxing bath turned into a splash fest. Oh well.

Normally I am a fall asleep when I hit the bed kind of person, but between worry and my back, I have had a hard time sleeping. After laying in bed for nearly 2 hours, I got up and took something to help me sleep, so I slept like a log which was nice.

One more night of waiting....

Our journey has begun ... again

2010-03-04T20:09:00.001-05:00

Husband, father, young, healthy, smart, funny, quite, athletic, and strong - These are just a few words that I would use to describe my husband. Cancer patient wasn't even an blip on the radar screen.

This is my story. The story of a young woman, mother of a toddler, and wife of a cancer survivor who is now fighting cancer again.

When Patrick was diagnosed with cancer the Tuesday after Memorial Day 2009 lots of people suggested I blog about it. Really? Our daughter Cameron was 17 months old, my job was in limbo, and I hardly had time to draw a deep breath. Blog? Who has the time or energy for that. If I sat down longer than 10 seconds, I would fall asleep. My life felt like it had been snatched to a screeching halt - CANCER!! WHAT??

After one of the longest weeks of my life waiting to get into to see the doctor, The oncologist in Columbia's first question was "Can you go to Texas?" That was Monday; we were in TX on Thursday. Our entire 2009 was spent fighting the intruder into our life known as an adenocarsinoma of the sinus. Trips back and forth to MD Anderson Cancer Center in Houston; hours in waiting rooms; praying my way through 8 hours of surgery; long nights "sleeping" in that uncomfortable chair in the ICU; watching Patrick leave to drive to TX to begin his radiation alone; listening to Cameron ask for her daddy, knowing that it would be weeks before we could be with him; sleeping alone knowing I would kill to stick my cold feet on him; the sheer elation of seeing him in the airport; the gut wrenching feeling as I watched him so tired that he could hardly hold his head up; nearly force feeding him when he didn't feel like eating.....the journey was long, difficult, and it put my whole world in perspective. He finished radiation treatment, and I drove Patrick, Cameron and me 20 hours home from Houston, and back into normal life...At least that is what I thought.

Monday, March 1st Patrick went to his Ear Nose and Throat (ENT) doctor for a regular 3 month check up and he said "I see something that looks abnormal. I'm going to do a biopsy. We will know in a couple of days."

All of you that know me will be able to picture this:

I swoop into the house after a long day of work and commence a monologue of my day and the excitement of Cameron successfully going to the potty THREE TIMES at daycare. Then Patrick gets the quick list of questions "What do you want for dinner?" "How was work?" "How was your doctor's appointment?" Then he gives me the news. I get hot all over and feel like I might throw up. I well up, and a few little traitorous tears escape from my eyes. I manage to keep it together long enough to get in the car to go pick up some dinner, and I wept all the way to Papa John's. I get in the house, feed Patrick and Cam some pizza, and I just look down.

The wait begins.....