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.
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