Wednesday, October 26, 2011

A good man lost

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