The pain meds I was on gave me such vivid dreams. IRael has told me stories of things I would shout in my sleep, or the conversations I would make when people tried to wake me. It makes me wonder what was going on in my head during all this.
I remember dreaming I was working at Target and I kept thinking to myself, "I need to get back to the hospital" instead of being at Target. No one there could see me though, I was kinda like a ghost. I would stock products onto the shelves and keep thinking "ok, I'll stock this one last item, then I need to return to the hospital, my boss will understand..." but I would just go get more products to stock.
The other vivid hallucination I remember was once when I woke up I looked up and near the foot of my bed there was a man standing there. I think my mom was in the room with me, but I couldn't see him the way I could see her. He was like a shadow, faded, almost indistinct. He was looking down at the floor near his feet and his arms were by his side. He had long hair that hid his eyes from me. I asked my mom who it was and she told me there was no one there. At that point he started moving away from the bed towards the wall. I held out my hand and told him not to be afraid, that he could come talk to me if he wanted. But he didn't say anything, or change the expression on his face, or change his posture. He just backed up to the wall, becoming more like a shadow, until he disappeared completely.
I have never had a dream feel so real. I don't believe it was anything besides a dream, a hallucination. But it felt so real, that I could reach out and touch him. The power of the mind amazes me, that it can make something out of nothing and then convince our consciousness it exists.
05 December 2009
History, Part II
This is an account of what I remember during my stay in the hospital. This is how I remember things being explained to me. Especially during the first few weeks of my treatment I was horribly ill and often unable to make my own decisions regarding my care. The pain medications I was taking gave me such vivid hallucinations I would babel nonsense while I slept. My family will have a different take on what I went through, but here is my account.
Chemotherapy sucks. Not that this is new and surprising information for anyone, but I had never seen someone go through chemo in my life. Unless you go through it yourself or live with someone day-to-day who is going through it, there is no way to know how awful it can be. The whole point of chemo is to destroy fast-growing cancer cells in your body, definitely a good thing. The problem, however, is that it not only kills the cancer cells but many other types of fast-growing, healthy cells. The cells lining your entire GI tract (mouth, esophagus, stomach, and intestine), hair follicles, skin cells, and immune cells can all be wiped out by chemotherapy, causing all sorts of major problems and discomforts.
Chemotherapy sucks. Not that this is new and surprising information for anyone, but I had never seen someone go through chemo in my life. Unless you go through it yourself or live with someone day-to-day who is going through it, there is no way to know how awful it can be. The whole point of chemo is to destroy fast-growing cancer cells in your body, definitely a good thing. The problem, however, is that it not only kills the cancer cells but many other types of fast-growing, healthy cells. The cells lining your entire GI tract (mouth, esophagus, stomach, and intestine), hair follicles, skin cells, and immune cells can all be wiped out by chemotherapy, causing all sorts of major problems and discomforts.
A week before I went into the hospital I took a trip with my family to my uncle's house in Wisconsin. While I was there I developed a sharp pain on my left side whenever I coughed. It felt better after a few days and didn't think much about it. Once I was admitted it was clear this pain was because of an infection. Aspergillis, a common fungus, had established itself in my left lung and, because my immune system was full of non-functioning cancer cells, my body was unable to effectively fight it. I was started on a bunch of different antibiotics and antifungals to fight it while I was undergoing chemo (since chemo would wipe out my immune system). One of the antifungals was Amphotericin, the best antifungal out there. It was terrible to have to take. Besides being toxic to the kidneys (more on that later...), it would cause rigors. My entire body would shake uncontrollably and I would feel like i was freezing. The nurses would wrap my entire body in eight or ten hot blankets hoping to make me comfortable. I took it every day for about three months. At first the rigors were terrible, lasting twenty minutes or so, but by the end my body had become used to the medication and they usually didn't happen at all.
I went through two rounds of chemo - the first one I don't remember very well and the second one I do. My first round, in early June, was two different drugs taken over seven days. My CBC quickly fell from 100,000 to almost zero and the infection in my lung began to spread. I slept a lot and must have had a lot of discomfort because this is when I was taking all the heavy pain meds. My memories are hazy, but things got worse quickly. I remember going for lots of different procedures. They were having a hard time identifying the fungus in my lung (and thus didn't know how best to treat it). They did a procedure to remove fluid from around the infected lung. I think they took out a liter or two, which helped me breathe easier. They did another procedure where they put a tube into my lung and flushed saline around in an area to try to capture spores which they could then grow and identify. It didn't work. And the fungus kept growing.
Then my kidneys began shutting down. I think it was due to all the stress from the medications I was taking in tandem with the job of cleaning my blood from all the remnants of the cancer cells. So I had to go on dialysis, which meant I had to have an access port put into my neck. I had to go down to a procedure room to have it put in. While I was there I kept breathing more and more quickly and my heart rate kept climbing. I remember the nurse kept telling me I needed to calm down and breathe more slowly. I couldn't, I didn't feel anxious, I just couldn't breathe. The doctor putting in the port kept asking how I was doing and the nurse kept responding "not well". Then everything just disappeared.
The fungus had spread from the bottom part of my left lung into the entire left side and began infiltrating the right. I felt like I couldn't breathe because both of my lungs were so clogged with fungus that enough oxygen exchange wasn't occurring - I was suffocating. So my heart kept beating faster and faster, trying to get enough oxygen to the blood, but it just couldn't keep up and I passed out. I don't know exactly what happened next but the port was installed, I was put on a ventilator, and was taken to intensive care. I was kept unconscious while the ventilator was in and I went through dialysis. IRael told me later that the doctors gave me a 10% chance I would survive the multi-system organ failure and a 5% chance I would ever get off the ventilator.
They underestimated me. I think I was on the ventilator three days before it was removed and I could breathe on my own again. I stayed in the ICU for maybe another couple of days before I was transferred out. By this time my immune system had began it's slow recovery and started fighting off the infection. The next couple weeks were full of more strong pain meds, dialysis, and lots of coughing, but it seemed the worst was over, at least for the time being.
03 December 2009
History, Part I
IRael took me to the emergency room at the University-Fairview Hospital on Sunday, 31 May 2009. I had been feeling ill all day and had a temperature of 103˚F. I had been feeling pretty well until that day, except for a cough and feeling a little run-down. I had just graduated from college the week before, so I figured the stress from the past few months had caught up to me, no biggie. The ER nurse was worried I had H1N1 because of my cough, so they made me wear a face mask while I waited in the lobby. Eventually I was brought to an exam room and my blood was drawn. Around midnight the doctor came in and told me I had leukemia. My white blood cell count (complete blood count or CBC), which is a measurement of the number of white blood cells in a microliter (less than a droplet) of blood, was around 100,000. Normal is around 7,000. In addition, almost 100% of the cells visible when observed under a microscope were cancerous and non-functional. The ER doctor said my blood was so full of cancerous cells that it was becoming thick. We talked for a little more before I was transferred up to the oncology ward of the hospital to begin my stay.
As soon as I left the emergency department I began meeting my endless stream of doctors. The hospital is part of the University of MN Medical School, so each certified doctor was followed by their entourage of students. This is how a typical visit would go during my entire stay: I would be lying in bed, there'd be a knock at the door, and I would tell them to come in. There would be an attending physician who was the boss. S/he had been practicing for years and would make the final call when determining my care. Next in line were the fellows: practicing doctors who were nearing the end of their training in whatever specialty they had picked and had about the same knowledge of the attending. Then came the residents: doctors still in their "field training". Next was interns: med students just out of school. Finally were the med students themselves, who were still in school. Sometimes there would only be one or two doctors, sometimes there were eight. Typically only the fellows and attending doctors would be the ones who would talk to me, the rest were there to observe. Once they had finished they'd file out and I could hear the lower students asking questions to the attending and fellows about my case. Not only did I have a large number of doctors, but they would rotate every couple weeks. My care was still coordinated by a single doctor my case had been assigned to, but who came into the room to discuss treatment with me changed regularly.
Once I was admitted, the first thing they needed to do was figure out what kind of leukemia I had in order to know which chemotherapy drugs to treat it with. The test for this is a bone marrow biopsy. A core of bone about an inch long is removed from the hip and the resulting hole is aspirated to remove marrow that is then examined under a scope to determine the composition and morphology of the marrow cells. Most results are returned within a day or two, I think mine took four. It turns out that I have Acute Biphenotypic Leukemia (ABL or mixed-lineage leukemia), an extremely rare and aggressive form of the disease. Instead of either AML or ALL I have both, so to speak. The cancerous mutation occurred in a precursor cell to both the myeloid and leukocyte lineages (further towards the trunk of the tree). My oncologist later checked the University of MN's records database and said there have been less than ten cases ever recorded at the U of M, which is one of the top cancer hospitals in the nation and the pioneer of bone marrow transplants.
One of the toughest parts of having a rare cancer like mine is that the doctors don't know how best to treat it. If I had been diagnosed with AML or ALL there would be little question about the best course of action. There have been hundreds of thousands of cases of AML/ALL to reference and they have found what works best. With ABL there just simply isn't the information needed to form accurate and tested treatment plans. My doctors contacted cancer centers around the nation in order to figure out what to do.
If you do a Google search of AML or ALL you get more information than you could imagine: descriptions, pathology, statistics, treatments, etc. If you Google ABL you get crap. Most reputable cancer sites don't even mention it, and when I do find information for ABL the data is either biased heavily towards an older population, a small sample population, or extremely dated.
Even with the lack of an established treatment plan the doctors were able to develop a plan for chemotherapy and started it quickly. Then my real problems began.
As soon as I left the emergency department I began meeting my endless stream of doctors. The hospital is part of the University of MN Medical School, so each certified doctor was followed by their entourage of students. This is how a typical visit would go during my entire stay: I would be lying in bed, there'd be a knock at the door, and I would tell them to come in. There would be an attending physician who was the boss. S/he had been practicing for years and would make the final call when determining my care. Next in line were the fellows: practicing doctors who were nearing the end of their training in whatever specialty they had picked and had about the same knowledge of the attending. Then came the residents: doctors still in their "field training". Next was interns: med students just out of school. Finally were the med students themselves, who were still in school. Sometimes there would only be one or two doctors, sometimes there were eight. Typically only the fellows and attending doctors would be the ones who would talk to me, the rest were there to observe. Once they had finished they'd file out and I could hear the lower students asking questions to the attending and fellows about my case. Not only did I have a large number of doctors, but they would rotate every couple weeks. My care was still coordinated by a single doctor my case had been assigned to, but who came into the room to discuss treatment with me changed regularly.
Once I was admitted, the first thing they needed to do was figure out what kind of leukemia I had in order to know which chemotherapy drugs to treat it with. The test for this is a bone marrow biopsy. A core of bone about an inch long is removed from the hip and the resulting hole is aspirated to remove marrow that is then examined under a scope to determine the composition and morphology of the marrow cells. Most results are returned within a day or two, I think mine took four. It turns out that I have Acute Biphenotypic Leukemia (ABL or mixed-lineage leukemia), an extremely rare and aggressive form of the disease. Instead of either AML or ALL I have both, so to speak. The cancerous mutation occurred in a precursor cell to both the myeloid and leukocyte lineages (further towards the trunk of the tree). My oncologist later checked the University of MN's records database and said there have been less than ten cases ever recorded at the U of M, which is one of the top cancer hospitals in the nation and the pioneer of bone marrow transplants.
One of the toughest parts of having a rare cancer like mine is that the doctors don't know how best to treat it. If I had been diagnosed with AML or ALL there would be little question about the best course of action. There have been hundreds of thousands of cases of AML/ALL to reference and they have found what works best. With ABL there just simply isn't the information needed to form accurate and tested treatment plans. My doctors contacted cancer centers around the nation in order to figure out what to do.
If you do a Google search of AML or ALL you get more information than you could imagine: descriptions, pathology, statistics, treatments, etc. If you Google ABL you get crap. Most reputable cancer sites don't even mention it, and when I do find information for ABL the data is either biased heavily towards an older population, a small sample population, or extremely dated.
Even with the lack of an established treatment plan the doctors were able to develop a plan for chemotherapy and started it quickly. Then my real problems began.
02 December 2009
A Brief Overview
Leukemia is a cancer of the blood, affecting the production of healthy white blood cells. Cancerous cells found in the bone marrow divide abnormally, producing huge numbers of immature immune cells. These cells are produced in such high numbers that they crowd the marrow space, blocking the production of healthy immune cells and eventually spilling into the blood stream, traveling to other organs in the body and causing damage.
Think of it as a tree. A single stem cell exists as the base of the trunk. That cell dividing and differentiating is like traveling up the trunk and reaching the branches. Here there can be thousands of cells, like the leaves, but each could have a different function. Like a tree, these cells all grew up from the trunk and branched into different specialities. Leukemia affects this tree by causing a single branch on it to grow uncontrollably, causing so much disproportion that the tree as a whole cannot survive. Many different types of leukemia exist and are classified based on what cell types the cancer affect. The four most common types are Lymphoblastic Leukemia and Myelogenous Leukemia, both of which can occur acutely or chronically. These two titles refer to the specific cell lineage found to be cancerous (lymphoid or myeloid white blood cells). In these forms, the cancer can be though of as occurring near the ends of the branch, that is, once the cell lines have become relatively differentiated.
Leukemia affects people of all ages, genders, and races. Approximately 45,000 people will be diagnosed with leukemia in the United States in 2009. It has a higher prevalence among the elderly (median age at diagnosis is 66), men (57%), and individuals of European descent (12.8 per 100,000). Leukemia is the most common form of cancer in children (33% of total cancer diagnoses in children <14 years old). The overall five year survival rate among the four major leukemias among all ages is 55%, but it should be noted that children have a significantly higher survival rate than the entire population.
Statistics taken from the Leukemia and Lymphoma Society.
Think of it as a tree. A single stem cell exists as the base of the trunk. That cell dividing and differentiating is like traveling up the trunk and reaching the branches. Here there can be thousands of cells, like the leaves, but each could have a different function. Like a tree, these cells all grew up from the trunk and branched into different specialities. Leukemia affects this tree by causing a single branch on it to grow uncontrollably, causing so much disproportion that the tree as a whole cannot survive. Many different types of leukemia exist and are classified based on what cell types the cancer affect. The four most common types are Lymphoblastic Leukemia and Myelogenous Leukemia, both of which can occur acutely or chronically. These two titles refer to the specific cell lineage found to be cancerous (lymphoid or myeloid white blood cells). In these forms, the cancer can be though of as occurring near the ends of the branch, that is, once the cell lines have become relatively differentiated.
Leukemia affects people of all ages, genders, and races. Approximately 45,000 people will be diagnosed with leukemia in the United States in 2009. It has a higher prevalence among the elderly (median age at diagnosis is 66), men (57%), and individuals of European descent (12.8 per 100,000). Leukemia is the most common form of cancer in children (33% of total cancer diagnoses in children <14 years old). The overall five year survival rate among the four major leukemias among all ages is 55%, but it should be noted that children have a significantly higher survival rate than the entire population.
Statistics taken from the Leukemia and Lymphoma Society.
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