We were not entirely sure what to expect when it came time for Andrew's first outpatient chemotherapy. We walked down the long hallway to the back end of the Huntsman Cancer Hospital, crossing the skybridge into the Hunstman Cancer Institute. Andrew checked in at the front desk and we took a seat in the lobby.
There were about 10 people in the lobby with us. We were quite obviously the youngest ones there. The middle-aged women looked at us with pity in their eyes. The older-men had tired scowls on their faces. The older women spoke amongst themselves in hushed whispers. One woman sat in the corner knitting. We played handheld Solitaire games and talked and laughed.
The longest part of the wait was before being called back. Sometimes we would wait for hours in that waiting room. Near the beginning of his chemotherapy days, we were patient and jovial and pleasant. We would talk and laugh and joke and play games. As the chemotherapy started to have an accumulative affect on Andrew, the waits got quieter and he grew impatient and edgy as we waited.
Once called back, you entered a long hallway-like room with about 15 modified patient armchairs. The nurses were clad in special chemotherapy gowns and masks. They looked like the hospitals own personal HazMat team. The room was generally quiet and had a depressing feel to it. On either side of the long room there was a "kitchen." They had coffee, teas, juices, milk, and different varieties of crackers and cookies and fruits.
Andrew and I would talk and laugh throughout his chemotherapy. It was our day together. We would plan lunch and spend the day together. The infusion room provided the stark realization that we were just kids. While most remained quiet, slept, read or knitted, we joked with each other, played games, and tried to keep a smile on our faces.
The nurses would sing a song on someone's last day of chemotherapy and give the patient a homemade blanket. It was sung to the tune of Happy Birthday:
"Congratulations to you,
Your chemotherapy is through!
We wish you good health
and happiness, too!"
After about 8-10 rounds of chemotherapy, Andrew's attitude and demeanor began to deteriorate. He was increasingly sick and fatigued from the chemotherapy. Many times, the mere anticipation of the infusion room invoked vomiting. It began getting harder and harder to accompany him. His spirits were down and he was frequently edgy and bitter. The post-infusion transplants had long since stopped... he was now lucky to make it home from the hospital without having to pullover to vomit. He began changing the words of their song around for his turn.
"Congratulations to you,
your chemotherapy is through.
You now need a transplant,
so good luck to you."
The end of his infusion room days was anything but a landmark for him. All it meant was that now he would be receiving a bone marrow transplant and would have to remain inpatient for a period of time.
Another chapter begins.
Sunday, December 2, 2007
Cliché.
I knew it wasn't going to be good. The parents had voluntarily left the room while the doctors came in to talk to us about fertility issues related to chemotherapy and the treatment regime planned out for Andrew. Everything was so new. Only yesterday had they delivered a diagnosis. Tonight, they were starting chemotherapy. We took it in stride... this could be handled. It was a temporary thing-- he would have treatment, he would get better, and we'd live our lives.
The doctors entered the room. There were fact sheets and information pamphlets in hand. I eyed the door. What an uncomfortable topic. I held Andrew's hand while they delivered the news. They explained our options and suggested making a sperm donation before beginning chemotherapy. He handed us a card with a number. We were to call the number when we were ready for that donation.
We sat in silence after they left. I felt the walls of the room beginning to cave in on me and I had to get out of there. I fought back the burning sensation in my eyes as I headed for the door. "I have to go to the bathroom," I choked out when Andrew asked where I was going. I stepped into the hallway. My eyes felt blurry and I suddenly felt dizzy. I could see our family gathered at the end of the hallway in the lobby. I couldn't see them-- I knew I didn't want to see them. Seeing them would evoke the tears-- and crying in the hospital was so cliché.
It was too late, my mom saw me. Their eyes shifted in my direction and I felt them peering into me trying to read my reaction. My feet were moving, but I had no control. I saw my mom and I could no longer be strong. I couldn't hold it back anymore. I couldn't pretend to be okay. The tears poured out. I momentarily forgot where I was, I forgot there were other people around. I didn't care.
My mom saw my face and started crying. I fell into her arms and she just held me and rocked me while I sobbed uncontrollably. The family around me tried asking questions and asking how Andrew was. I couldn't answer. I only buried my face into my mom's shoulder and cried. I wanted to disappear. I wanted to be anywhere but here.
"Let's go for a run," my mom suggested. "Let's run up to the top of that hill." She motioned to the mountainside immediately behind the Huntsman Cancer Hospital. She knew I hated crying in public. She knew that I didn't want to be here. But I couldn't do it. I was crippled by exhaustion.
Finally I started talking in short jabbing sentences.
"It's not fair!" I cried into my mom's shoulder. "I know, honey, I know... it's not fair." I could hear the tears in her voice while she ran her fingers through my hair. I felt the need to explain further. "It's not bad enough that this has to happen right now-- but now it's something we're going to live with forever. It's not going to go away." She couldn't respond.
I could feel Andrew's parents staring at the back of my head. It almost stung. It felt as though they were telling me to calm down so as not to upset Andrew. I couldn't deal with it. I only cried harder. My head was light and I was suddenly exhausted and paralyzed by my tears.
Reality was beginning to sink in.
The doctors entered the room. There were fact sheets and information pamphlets in hand. I eyed the door. What an uncomfortable topic. I held Andrew's hand while they delivered the news. They explained our options and suggested making a sperm donation before beginning chemotherapy. He handed us a card with a number. We were to call the number when we were ready for that donation.
We sat in silence after they left. I felt the walls of the room beginning to cave in on me and I had to get out of there. I fought back the burning sensation in my eyes as I headed for the door. "I have to go to the bathroom," I choked out when Andrew asked where I was going. I stepped into the hallway. My eyes felt blurry and I suddenly felt dizzy. I could see our family gathered at the end of the hallway in the lobby. I couldn't see them-- I knew I didn't want to see them. Seeing them would evoke the tears-- and crying in the hospital was so cliché.
It was too late, my mom saw me. Their eyes shifted in my direction and I felt them peering into me trying to read my reaction. My feet were moving, but I had no control. I saw my mom and I could no longer be strong. I couldn't hold it back anymore. I couldn't pretend to be okay. The tears poured out. I momentarily forgot where I was, I forgot there were other people around. I didn't care.
My mom saw my face and started crying. I fell into her arms and she just held me and rocked me while I sobbed uncontrollably. The family around me tried asking questions and asking how Andrew was. I couldn't answer. I only buried my face into my mom's shoulder and cried. I wanted to disappear. I wanted to be anywhere but here.
"Let's go for a run," my mom suggested. "Let's run up to the top of that hill." She motioned to the mountainside immediately behind the Huntsman Cancer Hospital. She knew I hated crying in public. She knew that I didn't want to be here. But I couldn't do it. I was crippled by exhaustion.
Finally I started talking in short jabbing sentences.
"It's not fair!" I cried into my mom's shoulder. "I know, honey, I know... it's not fair." I could hear the tears in her voice while she ran her fingers through my hair. I felt the need to explain further. "It's not bad enough that this has to happen right now-- but now it's something we're going to live with forever. It's not going to go away." She couldn't respond.
I could feel Andrew's parents staring at the back of my head. It almost stung. It felt as though they were telling me to calm down so as not to upset Andrew. I couldn't deal with it. I only cried harder. My head was light and I was suddenly exhausted and paralyzed by my tears.
Reality was beginning to sink in.
Saturday, December 1, 2007
It's HOW much?
Friday, June 9, 2006.
Andrew was finally taken off one of his IVs.
The goal is to ween him from IV medications and replace them with the pill form of the medication. The bad news is that the medicine we got to replace this particular IV is a hell of a lot more money than the IV. (Insurance would cover 100% of the IV medications now, however for prescriptions, there are copays and different pay scales). With this medication down, he was down to one IV once a day, and one IV ran once a week. We were making progress.
My mom was the "babysitter" for the day. She took him to pick up his new medication at the doctor that day. While Andrew was in the clinic, my mom tried to be helpful. She walked down the pharmacy to pick up his prescription. When she got down there, she quickly changed her mind and returned to the clinic. I got a call on my cell phone.
"How much money do we have in our account?" This question usually means that what is about to follow is not a good thing.
"Enough, why?"
"I'm here to pick up my prescription to replace the IV."
I continue to lead him. "Well how much is it? $60? $70?"
"It's $886.00." The only response I could muster was to laugh. Never had I imagined that I would pay nearly $900.00 on one bottle of 60 pills. I could only laugh. I told him I would move some money around so we could pay for it.
Bitching about $70 prescriptions was a thing of the past.
Andrew was finally taken off one of his IVs.
The goal is to ween him from IV medications and replace them with the pill form of the medication. The bad news is that the medicine we got to replace this particular IV is a hell of a lot more money than the IV. (Insurance would cover 100% of the IV medications now, however for prescriptions, there are copays and different pay scales). With this medication down, he was down to one IV once a day, and one IV ran once a week. We were making progress.
My mom was the "babysitter" for the day. She took him to pick up his new medication at the doctor that day. While Andrew was in the clinic, my mom tried to be helpful. She walked down the pharmacy to pick up his prescription. When she got down there, she quickly changed her mind and returned to the clinic. I got a call on my cell phone.
"How much money do we have in our account?" This question usually means that what is about to follow is not a good thing.
"Enough, why?"
"I'm here to pick up my prescription to replace the IV."
I continue to lead him. "Well how much is it? $60? $70?"
"It's $886.00." The only response I could muster was to laugh. Never had I imagined that I would pay nearly $900.00 on one bottle of 60 pills. I could only laugh. I told him I would move some money around so we could pay for it.
Bitching about $70 prescriptions was a thing of the past.
Philosophy over Gin.
I had signed up for the seminar in advance. It was about bone marrow transplants and what it took to be a donor. I thought it was the noble thing to do. I should put myself on the registry to try to give back what someone had provided for my family. They told people it was uncommon to be selected to be a donor. They said it was a lot like winning the lottery. I decided it would be almost as exciting as winning the lottery.
The seminar was a waste of time. It was medical lingo that danced above everyone's head. People had a lot of questions for the doctor presenting. I didn't. I already knew the answers. I felt I could have answered them better than the doctor. I had to take a little break from the statistics and the side-effects and such and retreated into the hall. Nobody from my family asked questions or shot questing looks. They all knew. I didn't need to hear the statistics on survival for transplant patients. It was too fresh to me.
I let them draw my blood, take my information, and headed home. Duncan had been at my house when I left. I knew he would still be there. During this time Andrew had to have someone with him 24 hours a day. Since all the family had signed up for the seminar, Duncan came over.
I came home to Duncan leaned up against our bed writing furiously in his notebook. Andrew was passed out on the bed. It was only 8:30 p.m. Apparently he had fallen asleep during the movie they were watching. I had a suspicion that Andrew would fall asleep before I got home. His energy level was still suffering. It was not uncommon for him to be in bed and asleep by about 8:00 p.m. I stopped at the liquor store on my way home and picked up some Gin. Gin was our summertime drink. It was definitely a Gin night. I stopped by the gas station and picked up some mixers. I was hoping I could talk Duncan in to staying and hanging out with me for awhile. He hesitated at first, but then agreed. I poured us a couple drinks, and we sat out on the back porch watching the rain and talking.
The subjects ranged over the three or four refills we poured. I told him that I had been motivated to write lately. I wanted to relearn how to play the guitar and the piano and get myself a piano. I was hoping that I could get to the point of writing music. Megan had been wanting to get together and make music. Duncan was incredibly supportive. He was interested in helping. The three of us had talked about making music since high school. Mostly, it was talk. Only Duncan had actually followed through.
We talked about writing in general. We talked about the styles that people pick up. The main subject came to be about each person's life as a story. We wondered if we would be able to get someone to pick up our story and read it.
We talked about religion and the bible and radical leaders and "god". I told him that I thought of the bible as a book of fables. I didn't mean it as a degradation of what so many people revel as a holy text. I simply said that I see it as a book of stories that are meant to teach morals and values-- like a fable. I shared that I didn't think there was anything that made the bible more sacred or legitimate than other holy texts, such as the Quran. I told him that I think that they should all be taken collectively and deciphered and interpreted. After all, the bible wasn't written first hand. The writings came second or third hand as stories were passed down, and then eventually written down. Perhaps the gin was beginning to do it's wonders. I told him that if definitely sounded more like a case of fables to me than doctrine. Native Americans and many cultures taught right from wrong with stories. The conversation not surprisingly turned to religion and the idea behind "God."
We refilled our glasses and resumed our position on the back porch. We began talking about texts in general and about accepting things with an open mind and about going against popular culture. We talked about norms and thinking for oneself; not just accepting something as truth because it is the "norm."
Duncan reminded me that he thought I had been the first person to think that way back in high school because I had said that I wanted to read Mein Kampf just for the sake of reading it. I wanted to see for myself what it was all about. I didn't want to hear about it from a History teacher. I wanted to hear it from "the mouth of the pig" so to say. He said it made him think about getting all the perspectives, then deciding for oneself. I had forgotten about all that in high school.
I have not read Mein Kampf.
I have not read the entire Bible.
I have not read the Quran.
(I am behind.)
The seminar was a waste of time. It was medical lingo that danced above everyone's head. People had a lot of questions for the doctor presenting. I didn't. I already knew the answers. I felt I could have answered them better than the doctor. I had to take a little break from the statistics and the side-effects and such and retreated into the hall. Nobody from my family asked questions or shot questing looks. They all knew. I didn't need to hear the statistics on survival for transplant patients. It was too fresh to me.
I let them draw my blood, take my information, and headed home. Duncan had been at my house when I left. I knew he would still be there. During this time Andrew had to have someone with him 24 hours a day. Since all the family had signed up for the seminar, Duncan came over.
I came home to Duncan leaned up against our bed writing furiously in his notebook. Andrew was passed out on the bed. It was only 8:30 p.m. Apparently he had fallen asleep during the movie they were watching. I had a suspicion that Andrew would fall asleep before I got home. His energy level was still suffering. It was not uncommon for him to be in bed and asleep by about 8:00 p.m. I stopped at the liquor store on my way home and picked up some Gin. Gin was our summertime drink. It was definitely a Gin night. I stopped by the gas station and picked up some mixers. I was hoping I could talk Duncan in to staying and hanging out with me for awhile. He hesitated at first, but then agreed. I poured us a couple drinks, and we sat out on the back porch watching the rain and talking.
The subjects ranged over the three or four refills we poured. I told him that I had been motivated to write lately. I wanted to relearn how to play the guitar and the piano and get myself a piano. I was hoping that I could get to the point of writing music. Megan had been wanting to get together and make music. Duncan was incredibly supportive. He was interested in helping. The three of us had talked about making music since high school. Mostly, it was talk. Only Duncan had actually followed through.
We talked about writing in general. We talked about the styles that people pick up. The main subject came to be about each person's life as a story. We wondered if we would be able to get someone to pick up our story and read it.
We talked about religion and the bible and radical leaders and "god". I told him that I thought of the bible as a book of fables. I didn't mean it as a degradation of what so many people revel as a holy text. I simply said that I see it as a book of stories that are meant to teach morals and values-- like a fable. I shared that I didn't think there was anything that made the bible more sacred or legitimate than other holy texts, such as the Quran. I told him that I think that they should all be taken collectively and deciphered and interpreted. After all, the bible wasn't written first hand. The writings came second or third hand as stories were passed down, and then eventually written down. Perhaps the gin was beginning to do it's wonders. I told him that if definitely sounded more like a case of fables to me than doctrine. Native Americans and many cultures taught right from wrong with stories. The conversation not surprisingly turned to religion and the idea behind "God."
We refilled our glasses and resumed our position on the back porch. We began talking about texts in general and about accepting things with an open mind and about going against popular culture. We talked about norms and thinking for oneself; not just accepting something as truth because it is the "norm."
Duncan reminded me that he thought I had been the first person to think that way back in high school because I had said that I wanted to read Mein Kampf just for the sake of reading it. I wanted to see for myself what it was all about. I didn't want to hear about it from a History teacher. I wanted to hear it from "the mouth of the pig" so to say. He said it made him think about getting all the perspectives, then deciding for oneself. I had forgotten about all that in high school.
I have not read Mein Kampf.
I have not read the entire Bible.
I have not read the Quran.
(I am behind.)
Harsh realizations.
We were expecting a short follow-up trip to the hospital. Things seemed to be going well. He had to follow-up weekly with BMT to make sure his counts were high enough to be mingling with the real world.
We arrived promptly at 10:00 a.m. In and out. In and out. That's all we were thinking. We had made plans to go out to lunch when we were done. We drew his blood at home and dropped it off at the lab on our way upstairs to the BMT unit. It was supposed to be faster that way.
His counts came back reasonable. This was good news.
They wanted to give him a dose of methotrexate while his counts were good (this is bad news). Methotrexate is a chemotherapy agent they had injected into him numerous times before. This particular agent was meant for his spinal fluid to make sure no disease lived on in hiding in his spine. He was visibly upset. The doctors left the room. Andrew vomited. It was the first time in months that he had vomited. The mere thought of more methotrexate was nauseating for him.
We had thought the days of chemotherapy were long gone. We thought that chapter was finished.
We were wrong.
We walked out of the hospital at 2:30. While waiting for the elevator on the fifth floor, an older gentleman and his daughter joined us. He was also a transplant patient. The signature bone marrow transplant mask gave it away. His daughter looked to be about our age. The man looked at Andrew in his mask. He said painfully, "You're much too young to be going through this. How old are you?" Andrew answered that he was 23. The man shook his head. His daughter stared in disbelief. We both offered a casual uncomfortable smile. The man shook his head. "You kids should never have to go through this. This should happen to old farts like me.... not kids your age."
All I could say was, "No. Nobody should ever have to go through this." It was not just a comment to be nice or polite. I meant it.
We rode down the elevator in silence. Neither of us had much of an appetite. We just went home.
We arrived promptly at 10:00 a.m. In and out. In and out. That's all we were thinking. We had made plans to go out to lunch when we were done. We drew his blood at home and dropped it off at the lab on our way upstairs to the BMT unit. It was supposed to be faster that way.
His counts came back reasonable. This was good news.
They wanted to give him a dose of methotrexate while his counts were good (this is bad news). Methotrexate is a chemotherapy agent they had injected into him numerous times before. This particular agent was meant for his spinal fluid to make sure no disease lived on in hiding in his spine. He was visibly upset. The doctors left the room. Andrew vomited. It was the first time in months that he had vomited. The mere thought of more methotrexate was nauseating for him.
We had thought the days of chemotherapy were long gone. We thought that chapter was finished.
We were wrong.
We walked out of the hospital at 2:30. While waiting for the elevator on the fifth floor, an older gentleman and his daughter joined us. He was also a transplant patient. The signature bone marrow transplant mask gave it away. His daughter looked to be about our age. The man looked at Andrew in his mask. He said painfully, "You're much too young to be going through this. How old are you?" Andrew answered that he was 23. The man shook his head. His daughter stared in disbelief. We both offered a casual uncomfortable smile. The man shook his head. "You kids should never have to go through this. This should happen to old farts like me.... not kids your age."
All I could say was, "No. Nobody should ever have to go through this." It was not just a comment to be nice or polite. I meant it.
We rode down the elevator in silence. Neither of us had much of an appetite. We just went home.
One little lie.
The late effects of the high dose chemotherapy and total body irradiation (TBI) have shown themselves. Andrew is now hooked up to a pain administrator. Morphine. It became his best friend as the drugs destroyed the cells in his mouth and throat. He hasn't been able to eat in weeks and has been receiving nutrition intravenously. Now, he can't swallow. They have put a suction tube next to his bed to suck the saliva and dying skin from his mouth. When he's not sleeping, his face is full of pain and frequently grimacing.
The doctors keep emphasizing how important it is for him to brush his teeth and keep his mouth clean. They are empathetic; they know it is incredibly painful with the current state of his mouth.
He seems to be sleeping a little less. It's evening and I'm at the hospital for the evening. He starts to stir, and throws his feet over the side of the bed. My attention is diverted away from my book.
"Watcha doin'?" I ask curiously. It's the most I've seen him move in awhile.
"I need to brush my teeth," he informs me. He reaches for his pain button and pushes it. "Brushing hurts a lot," he explains to me, almost childlike. I nod in approval. I study him for a few minutes, teetering on the edge of the bed, waiting for the morphine to take him away from his pain. His eyes close and he starts rocking, dangerously close to falling off the bed. I smile, and get up from my seat on the little couch.
"Why don't you lay down while you wait for it to start working?" I lay him down in his bed and he reminds me, "I have to brush my teeth, but it hurts, I'll do it in a minute," he pushes the button again, administering more morphine. He's out. I return to my book.
About fifteen minutes later, he's up again, stirring uncomfortably in his bed. Again, his feet are over the side of bed. He pushes his morphine button and reminds me, "I have to brush my teeth, but it hurts," I smile, wondering if he remembers that we already went through this. I nod in approval and watch him again. I'm betting myself that he falls back asleep. This time, he lays back down on his own. I smile and shake my head and continue reading.
Again, about fifteen minutes later, he sits up and says, "I need to brush my teeth." I fight back a laugh. How could I be laughing at him in this state? This time, he stands. He rocks unsteadily for a moment, then seemingly remembers that brushing is not going to be a pleasant experience and he pushes the morphine button. I am tempted to start counting backwards from 15 to see if he will be back in bed before I'm done. I refrain, but I think I would have been accurate. Again he's sitting on the bed. "I'm going to do it... I just have to get ready." I nod, "I know. You'll do it." Seconds pass. He's out again, lying uncomfortably on his bed.
At this point, I have made up my mind.
He wakes again. Same routine. "I need to brush my teeth," he tells me as I watch him with a half-smile.
"You already did, honey." I lied. I couldn't watch him keep doing this to himself.
"I did?" He sounded almost relieved. "Oh good..."
He lies back down and falls into another fitful sleep.
I smile, and continue to read my book.
The doctors keep emphasizing how important it is for him to brush his teeth and keep his mouth clean. They are empathetic; they know it is incredibly painful with the current state of his mouth.
He seems to be sleeping a little less. It's evening and I'm at the hospital for the evening. He starts to stir, and throws his feet over the side of the bed. My attention is diverted away from my book.
"Watcha doin'?" I ask curiously. It's the most I've seen him move in awhile.
"I need to brush my teeth," he informs me. He reaches for his pain button and pushes it. "Brushing hurts a lot," he explains to me, almost childlike. I nod in approval. I study him for a few minutes, teetering on the edge of the bed, waiting for the morphine to take him away from his pain. His eyes close and he starts rocking, dangerously close to falling off the bed. I smile, and get up from my seat on the little couch.
"Why don't you lay down while you wait for it to start working?" I lay him down in his bed and he reminds me, "I have to brush my teeth, but it hurts, I'll do it in a minute," he pushes the button again, administering more morphine. He's out. I return to my book.
About fifteen minutes later, he's up again, stirring uncomfortably in his bed. Again, his feet are over the side of bed. He pushes his morphine button and reminds me, "I have to brush my teeth, but it hurts," I smile, wondering if he remembers that we already went through this. I nod in approval and watch him again. I'm betting myself that he falls back asleep. This time, he lays back down on his own. I smile and shake my head and continue reading.
Again, about fifteen minutes later, he sits up and says, "I need to brush my teeth." I fight back a laugh. How could I be laughing at him in this state? This time, he stands. He rocks unsteadily for a moment, then seemingly remembers that brushing is not going to be a pleasant experience and he pushes the morphine button. I am tempted to start counting backwards from 15 to see if he will be back in bed before I'm done. I refrain, but I think I would have been accurate. Again he's sitting on the bed. "I'm going to do it... I just have to get ready." I nod, "I know. You'll do it." Seconds pass. He's out again, lying uncomfortably on his bed.
At this point, I have made up my mind.
He wakes again. Same routine. "I need to brush my teeth," he tells me as I watch him with a half-smile.
"You already did, honey." I lied. I couldn't watch him keep doing this to himself.
"I did?" He sounded almost relieved. "Oh good..."
He lies back down and falls into another fitful sleep.
I smile, and continue to read my book.
Virtual Loneliness
I've started reading. It passes the time while I sit virtually alone at the hospital.
Andrew is sleeping a lot these days. I'm not really sure how much time he spends awake and coherent during the day. I'm sure it's not more than a couple hours or so.
Today is no different. I sit by his bed with my hand on his leg. It's about 7:30 p.m. I have worked all day. When I got to the hospital one of his family members was there doing the same thing-- reading. They understood my need for some sort of normalcy and would leave when I arrived. It was our time now. Our time that he spent sleeping and I spent reading.
This time, he woke up and looked somewhat confused.
"Good morning, sunshine," I joked with him. Perhaps not the best choice of words on my part.
He stirs a bit, grimaces in pain, and looks at me, "What time is it?" he mumbles.
"Almost 7:30," I answer. I see confusion on his face and then he sleepily asks, "Aren't you going to work today?" I smile. "I already did. It's 7:30 p.m. I'm here now. I'm not going anywhere."
I think I see a hint of color in his face as he panics and sits up. His IV cords jolt with his sudden movement. His eyes scan the room quickly as he asks, "You let me sleep all day!?"
My heart melts. I know he hates sleeping late. He hates feeling lazy. I stand up and put down my book. "It's okay... it's okay. You need to sleep. Just lay back down. I'm not going anywhere."
His eyes stop darting about the room and he tentatively lays back down. His breathing slows again, and within seconds, he is again deep in sleep.
Again, I'm virtually alone.
Andrew is sleeping a lot these days. I'm not really sure how much time he spends awake and coherent during the day. I'm sure it's not more than a couple hours or so.
Today is no different. I sit by his bed with my hand on his leg. It's about 7:30 p.m. I have worked all day. When I got to the hospital one of his family members was there doing the same thing-- reading. They understood my need for some sort of normalcy and would leave when I arrived. It was our time now. Our time that he spent sleeping and I spent reading.
This time, he woke up and looked somewhat confused.
"Good morning, sunshine," I joked with him. Perhaps not the best choice of words on my part.
He stirs a bit, grimaces in pain, and looks at me, "What time is it?" he mumbles.
"Almost 7:30," I answer. I see confusion on his face and then he sleepily asks, "Aren't you going to work today?" I smile. "I already did. It's 7:30 p.m. I'm here now. I'm not going anywhere."
I think I see a hint of color in his face as he panics and sits up. His IV cords jolt with his sudden movement. His eyes scan the room quickly as he asks, "You let me sleep all day!?"
My heart melts. I know he hates sleeping late. He hates feeling lazy. I stand up and put down my book. "It's okay... it's okay. You need to sleep. Just lay back down. I'm not going anywhere."
His eyes stop darting about the room and he tentatively lays back down. His breathing slows again, and within seconds, he is again deep in sleep.
Again, I'm virtually alone.
I only need a Moment.
I don't sleep well at the hospital. The nurses are constantly bustling in and out of the room, the IV tower acting as a lifeline is constantly alerting the nurses or this or that, and Andrew would have fits of fevers or chills. I spent the nights staring the ceiling only pretending to sleep as the nurses would enter the room.
By the time light was shining through the hospital room window and I could hear the activities of a shift change outside the room, I would be aching to get up. I would gather my belongings, kiss Andrew's forehead and assure him I would be back later and to call if he needed anything. Usually, he barely stirred.
His face was gray and swollen, his eyes sunken. His hair had long been gone. No more blonde locks, no eyelashes, no eyebrows. He looked emaciated and pained. I'd smile at the nurses as I passed their station. Sometimes one would ask when I'd be back. The answer was usually the same. I would be back after work. To call me if they need me.
I never worried about him while he was up at the hospital. Chances were good that I would pass another willing "babysitter" in the parking lot coming to sit in with him. I stopped in the lobby and bought my coffee. "Right on time," the man would remark. I would force a smile, thank him, and head for my car.
Once my car started, I would stare blankly at the dashboard. Taking a deep breath, I would back out and head down the winding hill towards our house. The traffic was all headed the opposite direction as everyone rushed to start their days. Like clockwork, the tears start. First, one tear sliding out the side of my eye. I brush it away quickly. I lecture myself and try to concentrate on my drive. Silently, the tears fall freely down my face. I rarely remember the drive. Sitting in the driveway, I check my face to make sure it's not too red, gather my belongings, then pull myself from the car.
My neighbor says good morning. I feign the most cheerful voice I can muster and return the greeting. "How's Andrew?" I smile. "He's good..." It's not a lie. For his condition and what they've done to him, he really is good. She doesn't need the details of his emaciated body, his sunken eyes, his graying face, and his comatosed state of being. I let myself inside, strip down and turn on the water to the shower.
The water is refreshing. The heat is comforting and cleansing. It brings more tears. I have to get them out before facing the world again. Before going to work. Before calling and reporting to the family. Before heading back to the hospital. This is my moment.
I take it, turn off the water, and start another day.
By the time light was shining through the hospital room window and I could hear the activities of a shift change outside the room, I would be aching to get up. I would gather my belongings, kiss Andrew's forehead and assure him I would be back later and to call if he needed anything. Usually, he barely stirred.
His face was gray and swollen, his eyes sunken. His hair had long been gone. No more blonde locks, no eyelashes, no eyebrows. He looked emaciated and pained. I'd smile at the nurses as I passed their station. Sometimes one would ask when I'd be back. The answer was usually the same. I would be back after work. To call me if they need me.
I never worried about him while he was up at the hospital. Chances were good that I would pass another willing "babysitter" in the parking lot coming to sit in with him. I stopped in the lobby and bought my coffee. "Right on time," the man would remark. I would force a smile, thank him, and head for my car.
Once my car started, I would stare blankly at the dashboard. Taking a deep breath, I would back out and head down the winding hill towards our house. The traffic was all headed the opposite direction as everyone rushed to start their days. Like clockwork, the tears start. First, one tear sliding out the side of my eye. I brush it away quickly. I lecture myself and try to concentrate on my drive. Silently, the tears fall freely down my face. I rarely remember the drive. Sitting in the driveway, I check my face to make sure it's not too red, gather my belongings, then pull myself from the car.
My neighbor says good morning. I feign the most cheerful voice I can muster and return the greeting. "How's Andrew?" I smile. "He's good..." It's not a lie. For his condition and what they've done to him, he really is good. She doesn't need the details of his emaciated body, his sunken eyes, his graying face, and his comatosed state of being. I let myself inside, strip down and turn on the water to the shower.
The water is refreshing. The heat is comforting and cleansing. It brings more tears. I have to get them out before facing the world again. Before going to work. Before calling and reporting to the family. Before heading back to the hospital. This is my moment.
I take it, turn off the water, and start another day.
Thursday, August 16, 2007
Naivety
I was such a naive person. I didn't think so then, but looking back, I was incredibly naive.
That Friday was like any other. Especially any other recent Friday. Andrew had been seeing doctor after doctor to try to figure out where the impressive rash came from. Earlier that day, he was sent for a CT scan. I got off work to go sit with him and keep him company while he drank his contrast. We just hung out in the waiting room until it was his turn. I was disappointed when they made me continue to wait in the lobby. Then, it was over. I went back to work. He went home to rest.
When I got home from work, Andrew was sitting in the dark on the couch with his phone in his hand. The mood in the room was somber and eery. I sat next to him on the couch, let out my usual "glad to be home" sigh, and waited for some sort of action on his part. My boss had bought us Harry Potter tickets for opening night and the show was in a few hours. I had been busy during the day coordinating with my parents since we had given my dad 2 extra tickets for his birthday. But something wasn't right. Then it came out.
"The doctor called."
"Oh? What did she say?"
He was hardly audible. He mumbled something about them finding out what was wrong. CT Scan. Lymph nodes. Oncologist. Lymphoma. Huntsman. These words popped out at me. I could hardly hear anything else Andrew said while I studied the key words in my head. He said that I needed to call the doctor. Apparently the doctor had explained things to Andrew, but Andrew wanted her to explain them to me, too.
As I dialed the number, my heart was pounding. For so long now, we had just wanted to know what this was... and now, I wasn't so sure I ever wanted to know. I wanted to hang up the phone, hug my husband, and go to the movie. Not tonight. I didn't want to know. The phone rang. Huntsman Cancer Hospital. That word sent a shudder through my body. I asked for the oncologist on-call, as instructed.
The oncologist went through the explanation. The CT scans got in her hands after the dermatologist was skeptical about what she was seeing. We needed to get up there now. Andrew looked like he had Hodgkin's Disease. This was not near as scary as before. The word disease was a much nicer word than cancer. I tried to calm my fears by asking questions. I told her that he was a full-time student-- we both were-- and that we had finals coming up shortly. I told her it was important for us to not miss classes this close to the end of the semester. I asked her if we could get treatment started right away so he could get back to school for finals. She must have realized my naivety at that moment.
"Honey, he won't be going back to school this semester."
That Friday was like any other. Especially any other recent Friday. Andrew had been seeing doctor after doctor to try to figure out where the impressive rash came from. Earlier that day, he was sent for a CT scan. I got off work to go sit with him and keep him company while he drank his contrast. We just hung out in the waiting room until it was his turn. I was disappointed when they made me continue to wait in the lobby. Then, it was over. I went back to work. He went home to rest.
When I got home from work, Andrew was sitting in the dark on the couch with his phone in his hand. The mood in the room was somber and eery. I sat next to him on the couch, let out my usual "glad to be home" sigh, and waited for some sort of action on his part. My boss had bought us Harry Potter tickets for opening night and the show was in a few hours. I had been busy during the day coordinating with my parents since we had given my dad 2 extra tickets for his birthday. But something wasn't right. Then it came out.
"The doctor called."
"Oh? What did she say?"
He was hardly audible. He mumbled something about them finding out what was wrong. CT Scan. Lymph nodes. Oncologist. Lymphoma. Huntsman. These words popped out at me. I could hardly hear anything else Andrew said while I studied the key words in my head. He said that I needed to call the doctor. Apparently the doctor had explained things to Andrew, but Andrew wanted her to explain them to me, too.
As I dialed the number, my heart was pounding. For so long now, we had just wanted to know what this was... and now, I wasn't so sure I ever wanted to know. I wanted to hang up the phone, hug my husband, and go to the movie. Not tonight. I didn't want to know. The phone rang. Huntsman Cancer Hospital. That word sent a shudder through my body. I asked for the oncologist on-call, as instructed.
The oncologist went through the explanation. The CT scans got in her hands after the dermatologist was skeptical about what she was seeing. We needed to get up there now. Andrew looked like he had Hodgkin's Disease. This was not near as scary as before. The word disease was a much nicer word than cancer. I tried to calm my fears by asking questions. I told her that he was a full-time student-- we both were-- and that we had finals coming up shortly. I told her it was important for us to not miss classes this close to the end of the semester. I asked her if we could get treatment started right away so he could get back to school for finals. She must have realized my naivety at that moment.
"Honey, he won't be going back to school this semester."
Monday, June 11, 2007
"Potty Dance"
Andrew had been out pretty solidly for about a week. With the exception of a couple of hours during the day, he slept soundly. His body barely moved. His face had pain etched into it. His eyes were sunken and exhausted. At this point in time, his body was being nourished through an IV and he stirred only to go to the bathroom. Even this brief stir was hard work for him. He frequently fell back asleep while still sitting up in his bed, or even standing.
One day, I sat near his bed and read while he rested. Suddenly, Andrew jolts up. Alarmed, and somewhat amused, I looked in his direction. He had a complete look of panic on his face as he quickly gathered all the IV tubing around him and threw his legs over the side of the bed to feel out his slippers. Somewhat alarmed, I asked, "Can I help you with something?" He continued on with his bizarre new burst of energy and I quickly got up to assist however I could. He suddenly blurts out, "I have to go...!"
A little bit confused, I tried to get more information. "Go.... where?" He shot me a look that said where the hell are you from?! then responded, "TO THE BATHROOM!!" I stood corrected and a bit baffled for a minute, then frantically joined in the task of untangling his numerous IV life lines from the bed. He hadn't gotten up or moved in days, so the IVs were starting to grow around his bed frame.
Andrew danced around like a child trying to tell his parent he had to go to the bathroom. After about 15 seconds of frantic untangling, Andrew lost patience and just started pulling his IV tower behind him. I kept at the task, trying to free him before it was too late. It was already too late. With one swift and desperate pull on the tower, he became unhooked. He plopped down on the toilet-- not a minute too soon-- while blood is squirting everywhere from his IV. He calmly reached up to his port, clamped the tube and the blood flow stopped as quickly as it had started. Relief was pouring from him.
I was on the verge of frantic from the very beginning just given the drama of the situation. I hadn't been accustomed to such action in that 10' x 15' hospital room we called home for 40 days. Rarely did anything of excitement happen in that room. I opened the door. The nurses station was a few feet from our door, and the only word I had to say was "Blood." And they were there. One of them cleaned up the blood all over the floor while the other one stopped the IV pump and changed the tubing. I plopped myself down on the little couch and just started laughing uncontrollably.
By the time Andrew emerged from the bathroom, the nurses were ready to hook him back up and put him back to bed. He came out with a look of pure relief on his face-- oblivious to the humor in his entire performance.
One day, I sat near his bed and read while he rested. Suddenly, Andrew jolts up. Alarmed, and somewhat amused, I looked in his direction. He had a complete look of panic on his face as he quickly gathered all the IV tubing around him and threw his legs over the side of the bed to feel out his slippers. Somewhat alarmed, I asked, "Can I help you with something?" He continued on with his bizarre new burst of energy and I quickly got up to assist however I could. He suddenly blurts out, "I have to go...!"
A little bit confused, I tried to get more information. "Go.... where?" He shot me a look that said where the hell are you from?! then responded, "TO THE BATHROOM!!" I stood corrected and a bit baffled for a minute, then frantically joined in the task of untangling his numerous IV life lines from the bed. He hadn't gotten up or moved in days, so the IVs were starting to grow around his bed frame.
Andrew danced around like a child trying to tell his parent he had to go to the bathroom. After about 15 seconds of frantic untangling, Andrew lost patience and just started pulling his IV tower behind him. I kept at the task, trying to free him before it was too late. It was already too late. With one swift and desperate pull on the tower, he became unhooked. He plopped down on the toilet-- not a minute too soon-- while blood is squirting everywhere from his IV. He calmly reached up to his port, clamped the tube and the blood flow stopped as quickly as it had started. Relief was pouring from him.
I was on the verge of frantic from the very beginning just given the drama of the situation. I hadn't been accustomed to such action in that 10' x 15' hospital room we called home for 40 days. Rarely did anything of excitement happen in that room. I opened the door. The nurses station was a few feet from our door, and the only word I had to say was "Blood." And they were there. One of them cleaned up the blood all over the floor while the other one stopped the IV pump and changed the tubing. I plopped myself down on the little couch and just started laughing uncontrollably.
By the time Andrew emerged from the bathroom, the nurses were ready to hook him back up and put him back to bed. He came out with a look of pure relief on his face-- oblivious to the humor in his entire performance.
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