11.27.2008
Thursday, November 27th, 2008
Today we celebrate Thanksgiving. I have been successful in my goal of being home for the holiday. I am unable to eat much, but I am happy to be out of the hospital. While I was there I couldn’t eat anything for over ten days, so it is taking me a while to get my appetite back to normal. In the hospital my legs began to swell again, as well as my left arm. When my occupational therapist came to do my wrappings to treat the edema, she said my legs may never go back to normal. Two days after I return home the swelling is completely gone. I feel it is a miracle.
11.22.2008
Saturday, November 22, 2008
In less than a week I am able to transfer out of ICU. I have examined my incision and have asked Ryan to count the staples for me. He believes there are sixty four metal staples holding me together. I ask him to take a picture with his phone and text it to Sam. My scar is gigantic, and the doctors refer to it as a Mercedes, since it looks like that symbol without the circle surrounding it. The pain management team has suggested the use of non narcotic pain meds, such as Celebrex, which I believe is used for arthritis patients. They also want me to go to counseling to learn how to control my pain with my mind. I think that is bizarre. In the meantime I am on the Dilaudid PCS pump. I only press the button to administer the medicine when I am going to get up to walk. 
Tonight I am unable to sleep. I have not gone to the bathroom yet, and the pain from the bloating and constipation is severe. I lay suffering in the dark until I can take it no more. I have learned all the things I must do to help the situation. I wake Ryan up and ask him to walk with me in the hallway. It is around three in the morning. The nurse sees us and comes over to help. I am hunched over, clutching at my stomach. I am out of my mind with pain. I beg the nurse to help me, do something, anything. She says there is nothing she can do. So I walk and pray to God for strength.
Tonight I am unable to sleep. I have not gone to the bathroom yet, and the pain from the bloating and constipation is severe. I lay suffering in the dark until I can take it no more. I have learned all the things I must do to help the situation. I wake Ryan up and ask him to walk with me in the hallway. It is around three in the morning. The nurse sees us and comes over to help. I am hunched over, clutching at my stomach. I am out of my mind with pain. I beg the nurse to help me, do something, anything. She says there is nothing she can do. So I walk and pray to God for strength.
11.19.2008
Wednesday, November 19th, 2008
Only one day after my surgery I ask to get up and get into a chair. I am able to do it, but it is a complicated process with the numerous places I have tubing coming out of my body. I am determined; I learned my lesson from my last prolonged hospital stay. The sooner you are up and about the better things go and the sooner you can leave. I make it to the chair and am resting when Dr. Hafez stops by to see me. He asks how I am and I tell him I am thirsty, so thirsty and they won’t even allow me to have ice chips yet. He reaches into his pocket and pulls out two packs of gum. He offers me mint or cinnamon. I take mint and chew it. I will never forget his kindness.
I am also determined to take as little pain medication as possible. Narcotics cause constipation, which for me makes everything I am going through much, much worse. I have a phobia of pain medication, I still remember too well all the unsuccessful enemas and laxatives I was forced to take during my first hospital stay. The problem is that without pain medication, I won’t feel well enough to rehabilitate. I meet with the pain management team time and time again, they are trying to come up with a solution.
As impossible as it is to sleep in the hospital, the ICU is even worse. I become irritable and lash out at my mother, trying to make her feel bad for the brief time she has not been by my side. Even though I am in pain and in a bad mood, I am healing much more quickly than the doctors anticipated.
I am also determined to take as little pain medication as possible. Narcotics cause constipation, which for me makes everything I am going through much, much worse. I have a phobia of pain medication, I still remember too well all the unsuccessful enemas and laxatives I was forced to take during my first hospital stay. The problem is that without pain medication, I won’t feel well enough to rehabilitate. I meet with the pain management team time and time again, they are trying to come up with a solution.
As impossible as it is to sleep in the hospital, the ICU is even worse. I become irritable and lash out at my mother, trying to make her feel bad for the brief time she has not been by my side. Even though I am in pain and in a bad mood, I am healing much more quickly than the doctors anticipated.
11.18.2008
Tuesday, November 18th, 2008
I wake up in enormous pain, with a ventilator down my throat. I am beyond freaked out. The only thing I can think about is wanting it removed immediately. I motion for a piece of paper and pen so I can communicate this to the nurses. I plead with them to take it out but they are waiting for someone to perform a lung capacity test and want to slowly ease me off the machine. It is a horrible, panic inducing feeling to not be able to tell if you are breathing.
In the meantime they are unable to give me enough pain medication due to my extremely low blood pressure. I try to explain that my baseline BP is very low, but it takes hours for this to be straightened out. My room in ICU is tiny and very crowded. There is only about two feet between the end of my bed and the computer the nurses are using. Every time they walk between the two they bump against the bed, jarring me badly. Indescribable pain shoots across my entire body. I become furious and scribble orders for them to stop doing this. One nurse reads my note and tells the other to stop, but they are careless and repeatedly continue to bump me. I tap the paper and clipboard where I have written my request, glaring at the two of them.
Eventually my ventilator is removed and it is an enormous relief. I am finally able to notice what else is going on with my body. I am not ready to look at my incision yet, but I realize that I have IVs in my wrist and neck and arm and chest, and oxygen in my nose. The epidural will be left in my back for days. In addition to all that they will place a PICC line in my upper arm.
A specialist comes into my room to perform some type of test on me. There are already several nurses in the small room, bustling around me. The specialist leaves something by my feet and exits the room. She remembers she has forgotten it and returns, looking all around. Everyone helps her, but no one notices but me. I weakly motion to the item and she finally sees it and leaves once again. My dad has been watching this in the hallway and tells me how astounded he is by my mental clarity in the state I am in.
I obviously know nothing about the surgery, but my family tells me it went amazingly well. I was very stable throughout; they were able to remove the entire tumor and left kidney and a large piece of my IVC. They decided to replace it with and artificial stint. The liver specialist saw that my gallbladder needed to be removed and took that out while he was in there. He joked that I got a “two for one.” My main surgeon, Dr. Hafez closed me up himself. The surgical team believes they were able to get clear margins. After my tumor is sent to pathology we are told that the cells were dead, killed by chemotherapy and the embolization. I will have more chemo when I heal, to make sure no deadly microscopic cancer cell is left anywhere is my body.
Although I have no memory of this I am told that no one informed my family when I was transferred to ICU. They say that I had been up there for three hours and was awake when they arrived. I am also told that I repeatedly tried to lift my gown to see my incision in front of my dad and Peter. I like to believe that is not true. The white, creamy looking drug they gave me nicknamed “milk of amnesia” helps me pretend it never happened.
In the meantime they are unable to give me enough pain medication due to my extremely low blood pressure. I try to explain that my baseline BP is very low, but it takes hours for this to be straightened out. My room in ICU is tiny and very crowded. There is only about two feet between the end of my bed and the computer the nurses are using. Every time they walk between the two they bump against the bed, jarring me badly. Indescribable pain shoots across my entire body. I become furious and scribble orders for them to stop doing this. One nurse reads my note and tells the other to stop, but they are careless and repeatedly continue to bump me. I tap the paper and clipboard where I have written my request, glaring at the two of them.
Eventually my ventilator is removed and it is an enormous relief. I am finally able to notice what else is going on with my body. I am not ready to look at my incision yet, but I realize that I have IVs in my wrist and neck and arm and chest, and oxygen in my nose. The epidural will be left in my back for days. In addition to all that they will place a PICC line in my upper arm.
A specialist comes into my room to perform some type of test on me. There are already several nurses in the small room, bustling around me. The specialist leaves something by my feet and exits the room. She remembers she has forgotten it and returns, looking all around. Everyone helps her, but no one notices but me. I weakly motion to the item and she finally sees it and leaves once again. My dad has been watching this in the hallway and tells me how astounded he is by my mental clarity in the state I am in.
I obviously know nothing about the surgery, but my family tells me it went amazingly well. I was very stable throughout; they were able to remove the entire tumor and left kidney and a large piece of my IVC. They decided to replace it with and artificial stint. The liver specialist saw that my gallbladder needed to be removed and took that out while he was in there. He joked that I got a “two for one.” My main surgeon, Dr. Hafez closed me up himself. The surgical team believes they were able to get clear margins. After my tumor is sent to pathology we are told that the cells were dead, killed by chemotherapy and the embolization. I will have more chemo when I heal, to make sure no deadly microscopic cancer cell is left anywhere is my body.
Although I have no memory of this I am told that no one informed my family when I was transferred to ICU. They say that I had been up there for three hours and was awake when they arrived. I am also told that I repeatedly tried to lift my gown to see my incision in front of my dad and Peter. I like to believe that is not true. The white, creamy looking drug they gave me nicknamed “milk of amnesia” helps me pretend it never happened.
11.17.2008
Monday, November 17th, 2008
Surgery Day today. I wake up early and follow all the specific directions I have been issued. I have to shower with a special soap. As I scrub my stomach I realize I will never see it unblemished again. My friend Thelma, my grandparents, my parents and my brother Pete arrive in my room. I am nervous. I cry when I have to remove my wedding rings. I reluctantly hand them over to Ryan for safe keeping.
I am taken downstairs to pre-op. While I am in there I am only supposed to have one visitor by my bedside. We sneak in two people at a time and it is very difficult to tell them when to switch with the people in the waiting room. I want to see everyone, and I don’t want to hurt anyone’s feelings. Ryan’s mom arrives and comes in to wish me well. I sob when I have to say goodbye to Peter. I am not ready for my mom or Ryan to leave me. When they do the epidural I expect to be able to hold on to Ryan, like my friends have described from their labor stories. The anesthesiologists tell me no, that I have to do it alone, because of the risk of infection. I am terrified, but it is not as bad as I imagined.
The last thing that happens before I am wheeled in is that I realize I have forgotten to remove my underwear. I hand them over to the nurse, she stashes them under the gurney and I wonder if I will ever see them again.
I am taken downstairs to pre-op. While I am in there I am only supposed to have one visitor by my bedside. We sneak in two people at a time and it is very difficult to tell them when to switch with the people in the waiting room. I want to see everyone, and I don’t want to hurt anyone’s feelings. Ryan’s mom arrives and comes in to wish me well. I sob when I have to say goodbye to Peter. I am not ready for my mom or Ryan to leave me. When they do the epidural I expect to be able to hold on to Ryan, like my friends have described from their labor stories. The anesthesiologists tell me no, that I have to do it alone, because of the risk of infection. I am terrified, but it is not as bad as I imagined.
The last thing that happens before I am wheeled in is that I realize I have forgotten to remove my underwear. I hand them over to the nurse, she stashes them under the gurney and I wonder if I will ever see them again.
11.16.2008
Sunday, November 16th, 2008
Pastor Galen from Heart of the Shepherd comes to see me today. My mom has asked one of the pastors from St. Matthew to come and visit me, but they are only able to send the visitation pastor, a man who I do not know at all. Pastor Galen gives me communion, prays with my family and comforts my dad. He asks if I am ready for anything that may happen, and I tell him yes. The ladies from the church have made me a beautiful hospital gown. On the pocket is embroidered: Be strong and courageous, do not be afraid, for the Lord goes with you. It makes me feel brave.
I go for my last MRI. It is even longer than usual, and the technician has made me keep my arms raised above my head the entire time I am in the machine, instead of allowing me to switch positions part way through the scan. When I feel I can take it no longer and I am choking back sobs inside the cramped tunnel, trying not to let my chest move so the scan won’t have to be repeated another time, I am finally pulled out. The technician unhooks me and tells me that that he is sorry it has taken so long. He said that the viewing room was full of doctors, telling him what to do. I look at him questioningly and he says that my surgeon came down to make sure the scan was performed correctly. He claims he has never seen a surgeon come all the way down to radiology. In that moment I know that Dr. Hafez will take care of me.
I arrive back in my room to the sight of my family dressed in Team Angela tee-shirts. Sam texts me a picture of her, Josh, Jackson, and their cat Phoenix dressed up as well. We take pictures. Later that night I am surprised by a visit with my friend Krisitn and my friend Julie’s mom Joan. They have driven all the way from Grand Rapids in a snowstorm. I am happy to see them and to take my mind off what is to come.
Late in the evening the doctors come in to have me sign consent forms. It is creepy acknowledging that I may die and I remind myself that it is just a formality. I ask the doctor if they have received the results of my latest MRI. She tells me that they will not need to open my chest. The tumor has shrunk far enough away from my heart. I collapse against the bed in relief and Ryan calls everyone to tell them the good news.
I go for my last MRI. It is even longer than usual, and the technician has made me keep my arms raised above my head the entire time I am in the machine, instead of allowing me to switch positions part way through the scan. When I feel I can take it no longer and I am choking back sobs inside the cramped tunnel, trying not to let my chest move so the scan won’t have to be repeated another time, I am finally pulled out. The technician unhooks me and tells me that that he is sorry it has taken so long. He said that the viewing room was full of doctors, telling him what to do. I look at him questioningly and he says that my surgeon came down to make sure the scan was performed correctly. He claims he has never seen a surgeon come all the way down to radiology. In that moment I know that Dr. Hafez will take care of me.
I arrive back in my room to the sight of my family dressed in Team Angela tee-shirts. Sam texts me a picture of her, Josh, Jackson, and their cat Phoenix dressed up as well. We take pictures. Later that night I am surprised by a visit with my friend Krisitn and my friend Julie’s mom Joan. They have driven all the way from Grand Rapids in a snowstorm. I am happy to see them and to take my mind off what is to come.
Late in the evening the doctors come in to have me sign consent forms. It is creepy acknowledging that I may die and I remind myself that it is just a formality. I ask the doctor if they have received the results of my latest MRI. She tells me that they will not need to open my chest. The tumor has shrunk far enough away from my heart. I collapse against the bed in relief and Ryan calls everyone to tell them the good news.
11.15.2008
Saturday, November 15th, 2008
Andrew stays with me tonight, because he has to go back to school and will miss the day of the operation. Beth and Jay are visiting and we are all talking. While we are chatting, I fiddle with my IV connections. After a few minutes, Jason says he thinks I am leaking something. We look down; the fluids have made a small puddle on the floor. Once all of the fluid has dripped out, the liquid turns red and I realize in horror that my blood is pouring out of the IV I accidentally disconnected. Everyone jumps up and pages the nurse, but the sheet and my gown are soaked before Andrew runs into the hallway to get help. From then on I pay more attention to what I am touching.
After my friends leave we try to get some sleep. At around three in the morning the nurse comes in and says she needs to move me. Andrew tells her absolutely not, that I need my rest. He buys us a few more hours of less interrupted sleep. I call him my hero.
They have made me repeat my MRI twice already, because they have not been taking images of the upper portion of my tumor, which is the most important part. My surgeon, Dr. Hafez, needs to see if the tumor has shrunk down in the IVC, away from my heart. If it has not the operation will be even more complicated, and they will need to saw open my ribcage and do open heart surgery. There is a team of cardiologists standing by. A third MRI is scheduled for tomorrow. I am furious that they have not been performed correctly, because MRIs are long and achingly uncomfortable, and they are costing me time with my family each time they make me repeat the test.
After my friends leave we try to get some sleep. At around three in the morning the nurse comes in and says she needs to move me. Andrew tells her absolutely not, that I need my rest. He buys us a few more hours of less interrupted sleep. I call him my hero.
They have made me repeat my MRI twice already, because they have not been taking images of the upper portion of my tumor, which is the most important part. My surgeon, Dr. Hafez, needs to see if the tumor has shrunk down in the IVC, away from my heart. If it has not the operation will be even more complicated, and they will need to saw open my ribcage and do open heart surgery. There is a team of cardiologists standing by. A third MRI is scheduled for tomorrow. I am furious that they have not been performed correctly, because MRIs are long and achingly uncomfortable, and they are costing me time with my family each time they make me repeat the test.
11.14.2008
Friday, November14th, 2008
I am admitted to the hospital today, to be monitored and prepare for my surgery Monday. I have begged my mom to bargain with the doctors to allow me to come in Saturday, but they were firm. I wanted to have one more chance to do something fun before diving into this long and difficult process.
Lately, I have been lying awake at night wondering what will happen if I never come out from surgery. Morbid thoughts crowd into my mind when I am trying to sleep, even when I tell myself not to think of what may happen. I become more and more fearful. I want to be positive, and I trust God. But I need to ready my heart for the possibility of death. I consider that the worst that could happen is that I will go to heaven to be with Jesus, and suffer no more. The only thing that crushes me is the thought of leaving everyone I love behind. Ryan and I have had so little time together. I was never able to give him a child. I begin to worry about him, because while my parents and friends will miss me, everyone else has someone to cling to. But I am Ryan’s person and I would be gone.
I need to talk about what I am going through, to make it more normal, and to get me to a point to when I am able to accept that this is really happening. Some people are supportive; some do not want to hear it. But I do not want to leave things unsaid. I cry when I think that if I go now, I will not be present at my brothers’ weddings or get to meet their future children. I think about the fact that I would have been an awesome aunt to them.
I try to think of what I would want done with my treasured possessions, and I realize I don’t have too many things worth giving away. I decide that my mom gets my Pandora charms; Sam gets my Christmas decorations and Beth my collection of girly DVDs. Maybe my brothers or Sam and Beth should split my wedding rings. When I mention this to Ryan, he says he wants them. I tell him that his new wife won’t want my things around, and this becomes a running joke. My sister in law Angie says she wants to head up the committee to find Ryan a new wife, to make sure she is not the kind of girl I would have despised.
This weekend is uncomfortable and frustrating for me. I begin my stay in a regular hospital room, but I am quickly transferred when they close that floor of the hospital and move all the patients. I end up in a newly constructed part of the hospital, which will eventually be an intensive care unit. ICU rooms have a huge wall of windows to allow constant monitoring and a toilet right next to the bed instead of a regular bathroom. This one has been modified to allow some privacy; a curtain can be drawn over the windows and door. This poses a problem for me. I have a lot of visitors; many people want to see me before I go under the knife. First of all I am out of the room for MRIs that take hours and hours, and secondly the doctors want to clean out my system. When they open me up and move everything around they need an empty bowel to prevent infection. So, I am not allowed to eat. At all. And I am forced to drink laxatives.
Laxatives don’t allow you much warning before you need to use the bathroom. When you need to go, you need to go NOW. So during the middle of my visits I exclaim, ok, I need to use the toilet, and everyone scurries to the hallway. The curtain can only be closed from the inside, so I drag my IV pole to the wall of windows, try not to catch the curtain in the door then rush back to the toilet to do my business. When I am done I spray some air freshener and invite everyone back in, totally embarrassed.
Lately, I have been lying awake at night wondering what will happen if I never come out from surgery. Morbid thoughts crowd into my mind when I am trying to sleep, even when I tell myself not to think of what may happen. I become more and more fearful. I want to be positive, and I trust God. But I need to ready my heart for the possibility of death. I consider that the worst that could happen is that I will go to heaven to be with Jesus, and suffer no more. The only thing that crushes me is the thought of leaving everyone I love behind. Ryan and I have had so little time together. I was never able to give him a child. I begin to worry about him, because while my parents and friends will miss me, everyone else has someone to cling to. But I am Ryan’s person and I would be gone.
I need to talk about what I am going through, to make it more normal, and to get me to a point to when I am able to accept that this is really happening. Some people are supportive; some do not want to hear it. But I do not want to leave things unsaid. I cry when I think that if I go now, I will not be present at my brothers’ weddings or get to meet their future children. I think about the fact that I would have been an awesome aunt to them.
I try to think of what I would want done with my treasured possessions, and I realize I don’t have too many things worth giving away. I decide that my mom gets my Pandora charms; Sam gets my Christmas decorations and Beth my collection of girly DVDs. Maybe my brothers or Sam and Beth should split my wedding rings. When I mention this to Ryan, he says he wants them. I tell him that his new wife won’t want my things around, and this becomes a running joke. My sister in law Angie says she wants to head up the committee to find Ryan a new wife, to make sure she is not the kind of girl I would have despised.
This weekend is uncomfortable and frustrating for me. I begin my stay in a regular hospital room, but I am quickly transferred when they close that floor of the hospital and move all the patients. I end up in a newly constructed part of the hospital, which will eventually be an intensive care unit. ICU rooms have a huge wall of windows to allow constant monitoring and a toilet right next to the bed instead of a regular bathroom. This one has been modified to allow some privacy; a curtain can be drawn over the windows and door. This poses a problem for me. I have a lot of visitors; many people want to see me before I go under the knife. First of all I am out of the room for MRIs that take hours and hours, and secondly the doctors want to clean out my system. When they open me up and move everything around they need an empty bowel to prevent infection. So, I am not allowed to eat. At all. And I am forced to drink laxatives.
Laxatives don’t allow you much warning before you need to use the bathroom. When you need to go, you need to go NOW. So during the middle of my visits I exclaim, ok, I need to use the toilet, and everyone scurries to the hallway. The curtain can only be closed from the inside, so I drag my IV pole to the wall of windows, try not to catch the curtain in the door then rush back to the toilet to do my business. When I am done I spray some air freshener and invite everyone back in, totally embarrassed.
11.09.2008
Sunday, November 9th, 2008
Today is the baptism of Jackson William Mann. The fall is passing by, and along with lots of bad there is some good. Sam and her son Jackson came to see us on Halloween and stayed until the beginning of November. Jackson was born in August, when I was still so ill that I barely knew what was going on around me. I had only seen pictures of him on text messages, facebook, and email. This was the first chance I had to hug and kiss my godson. Sam is able to schedule his baptism at my church, St. Matthew in Walled Lake. Before she left Michigan Sam attended there for about ten years. My mom arranged for Pastor Paul to perform the ceremony, which meant a lot to us.
After the baptism, Beth is having her baby shower for her first born, Breslin Megan Scott. It is wonderful to have all three of us together again, and spending time with Jackson is a joy. He makes me truly happy for the first time in a long time. Sam made this trip now so that she could see me while I am on a break from chemo, so I would be healthy enough to go out and do things with the girls. She wanted to come closer to my surgery date, which has been scheduled for November 17th. After thinking about we decided it would be better this way. I have stopped chemo until a little while after my surgery, so that my body will be strong enough to sustain the intense operation and heal afterwards.
After the baptism, Beth is having her baby shower for her first born, Breslin Megan Scott. It is wonderful to have all three of us together again, and spending time with Jackson is a joy. He makes me truly happy for the first time in a long time. Sam made this trip now so that she could see me while I am on a break from chemo, so I would be healthy enough to go out and do things with the girls. She wanted to come closer to my surgery date, which has been scheduled for November 17th. After thinking about we decided it would be better this way. I have stopped chemo until a little while after my surgery, so that my body will be strong enough to sustain the intense operation and heal afterwards.
Subscribe to:
Posts (Atom)
