I'm halfway to my maximum dose, now at 100mg of azathioprine a day. It's one of the best studied drugs for these forms of autoimmune lung disease, and based on the research I've read, has limited side effects. The drug that might cause cancer and liver failure is, I repeat, one of the gentler drugs we could use for this. One study of azathioprine for a similar condition to this had a 30% drop-out rate. People who have the choice of lung transplant (often followed by azathioprine) from damage caused by stopping azathioprine or continuing azathioprine stopped taking it 30% of the time because of what it does to your quality of motherfucking life.
This isn't funny. My doctor made a point of using the words remission instead of "cure" and chemotherapy instead of "treatment" to make damn sure I knew that this ride is as hard and as long as the ride I expected to go through in about 20 years, when the double-barreled cancer gun I have pointed at me goes off. (That ride is one reason I did cancer research- I would like the treatment when I am post-menopausal to be as gentle as a day at the spa.) I will say this: People who've gone through cancer seem to understand shit about what I'm going through. The others seem to only think extreme drug therapy is for cancer, and don't get that what's killing me is my cells going batshit, just like cancer. The difference is that the cells that are killing me are screwed up in a different way. Where cancers of the white blood cells and immune system are about the cells growing out of control, what I am dealing with is the cells I have not understanding that my body is not a virus or an enemy. The signal that tells a white blood cell to not eat healthy tissue is fucked up. My white blood cells see healthy lung or muscle tissue and go "this is infected, we need to destroy it." If we don't get my white blood cells to start seeing my body as my body instead of as an intruder, there is a possibility this could spread to other systems. Attacking my lungs is bad, but if it started in on my heart or brain, I could be really screwed. Especially since the part of the lungs it likes to attack is a part that grows back. If it went for nervous tissue, I would not be getting it back...
So this is my life. This is chemotherapy. This sucks, and this is why I don't know when my next book comes out or if my next book comes out or what the fuck. I should add, that, through all of this, Social Security says I am "disabled" but not disabled enough to collect disability. To their credit, after the bajillionth hospitalization and some nasty letters to them from my doctor, they are reviewing everything and now I'm in the "we will make a decision soon" waiting period again, not the "take it to a judge" waiting period. The 'back payment' if the thing goes through won't even be enough to fix my house, my car, my newly broken oven or my hospital bills. Bankruptcy is very likely at this point. I will say this: I have learned to live a simple life. If I can get the house paid off, I think I can manage on less than $700 a month. Social security, you see, is based in part on what you make, and as I told people when I was making a living, science does not pay shit.
So this is my life...
Every morning, at about 7am, Phoenix wakes me up to take my normal pills, a pill for my thyroid, a pill for the high blood pressure the steroids cause (when I'm off them, I don't need that) a daily allergy pill, the tremor pill and a vitamin D. The thyroid pill plays nice with these pills, but none of the others, so we get them over with. Most of the time, I can fall back asleep for an hour, sometimes longer (the steroids and azathioprine mess up my ability to fall asleep, so sometimes at 7am I've only had 3-4 hours of sleep) and I avoid the mild upset tummy the thyroid pill causes for about 30 minutes.
By 11, I am usually out of bed, and it's time for the azathioprine and steroids, and the anti-pneumonia pill that goes with them. The anti-pneumonia pill, and also the steroids, cause me to be dizzy, so I'm usually also bruised from falling down, so I'm usually taking these around the same time as an over the counter painkiller and an assortment of over the counter anti-nausea drugs. While I was on 50mg of azathioprine, I would get sick about 40 minutes after taking it, being able to do nothing but lie on the floor for about 15 minutes, then it goes away like someone flicks a switch, and I can move around again. I should add that to move around, I am on supplemental oxygen, which means a long tube runs from my nose to a loud and very costly (electricity wise) to run machine at almost the center of my house. I can be off the machine when sitting still, but I'm supposed to use it while moving or at night, to keep from having a stroke...I regularly don't run it at night because I can't afford the electricity to run it. I avoid using it during the day by staying in one place. The good news is that it's almost impossible for my electric company to turn off my electricity for non-payment, because I'm on life support.
Since switching to 100mg of azathioprine, my tummy is upset when I take it at 11 am..it's upset when I go to bed 11 hours before that...it's upset all day. About 15 minutes after taking the pill, or 15 minutes after taking the second pill if I try to space them out during the day, I am gripped by norovirus-like projectile vomiting and diarrhea, and if I lose the pills in my stomach, I need to take them again. Most of the time, through sheer force of will, I can keep from puking, but that does nothing for what's going on at the other end. If I take the pills with yogurt, and maybe a piece of toast, I can usually keep them down. The business at the other end comes and goes for about 4 hours. By dinner time, if I am lucky, I can hold food down again. If I eat too late, however (as I did last night) the vomiting and pain keep me up most of the night.
I didn't mention the pain.
Imagine you have a hot poker in your stomach. Nothing you take relieves it, and when you press your hand to your stomach it feels like you are in the last month of pregnancy, and the baby is angry. What clothing you wear, eating, anything, effects this poker...So you spend the bulk of the day naked or in pajama bottoms and a bra, because anything putting pressure there brings you to tears. You find yourself sitting at a computer for 12, 16 hours a day, because getting up hurts too much and half the time you fall down, anyways...and there is always the stupid motherfucking tube if you want to do anything safely.
Oh, and there is the being lucky to get 1000 calories a day, but not losing weight, which is just not fair. To her credit, my wife, who was never taught to cook, can follow a recipe, so she can make food that is edible, but I was always the cook in the family, and now I can't use the stove, because of the damn oxygen tube, and the whole falling down thing.
So why do you put up with this, right? I am an advocate of checking oneself out when it goes too far, when shit can't be fixed. It doesn't bother me, and I'm not afraid of death. One of the treatments I use for nausea is, in fact, lethal at a large dose. I could take the whole bottle, pop two of the pills I have in my medicine cabinet and be late. As in The Late Labgrrl.
I don't do this because there is the promise of remission. I might go through this chemotherapy for a year, maybe even two, but then be fine for 3, 10, even 20 years. It is rare, but some people with this have gone into remission and never come out of remission. Some of them also got worse and died.
I am around 40 years old. I have been dealing with this now for three years. The median age of people affected by this group of lung diseases is 67, and half of them live another 10 years after diagnosis...but they are senior citizens when they get sick, and living another 10 years isn't assured for them without lung disease. We don't know what prognosis is like for someone who is 40, female, and whose only other medical complaint is essential tremor and needing to shed some pounds...we don't know. There aren't support groups, or walk-a-thons or a ribbon campaign, for this shit.
We don't know why it strikes. It doesn't look genetic, but since I got sick my mother has also gotten sick with a similar disease. Right now, my son has a bad chest cold and I lie awake at night wondering if I gave him my anti-body antibodies when he was breastfed, two decades ago. To make matters worse, my mom and I are in similar professions: so there is always the chance it's not genetics at all, but we're just more in a long line of science professionals dropped by autoimmune diseases...and there are a lot of them.
I don't check out because of the promise of remission. I believe in remission. I believe I will get better. I will always have a fucked immune system, so science is off the table for me as a career in the future.If I get better...when I get better...I am seriously contemplating biomedical law as a new career, and if I can get disability straightened out there are arrangements I can make with my state to take 1-2 classes a semester for next to nothing, to keep me sane and give me a career where I won't be exposed to chemicals, bacteria and viruses, except for the same ones I get from going outside...which I'm pretty much not allowed to do right now.
But I would be lying if I didn't tell you that this sucks, and hard. This sucks, and hard. I didn't do anything to deserve this shit, but I'm the one who landed it, and I'm the one who is going to kick its ass...but it sucks.
This isn't funny. My doctor made a point of using the words remission instead of "cure" and chemotherapy instead of "treatment" to make damn sure I knew that this ride is as hard and as long as the ride I expected to go through in about 20 years, when the double-barreled cancer gun I have pointed at me goes off. (That ride is one reason I did cancer research- I would like the treatment when I am post-menopausal to be as gentle as a day at the spa.) I will say this: People who've gone through cancer seem to understand shit about what I'm going through. The others seem to only think extreme drug therapy is for cancer, and don't get that what's killing me is my cells going batshit, just like cancer. The difference is that the cells that are killing me are screwed up in a different way. Where cancers of the white blood cells and immune system are about the cells growing out of control, what I am dealing with is the cells I have not understanding that my body is not a virus or an enemy. The signal that tells a white blood cell to not eat healthy tissue is fucked up. My white blood cells see healthy lung or muscle tissue and go "this is infected, we need to destroy it." If we don't get my white blood cells to start seeing my body as my body instead of as an intruder, there is a possibility this could spread to other systems. Attacking my lungs is bad, but if it started in on my heart or brain, I could be really screwed. Especially since the part of the lungs it likes to attack is a part that grows back. If it went for nervous tissue, I would not be getting it back...
So this is my life. This is chemotherapy. This sucks, and this is why I don't know when my next book comes out or if my next book comes out or what the fuck. I should add, that, through all of this, Social Security says I am "disabled" but not disabled enough to collect disability. To their credit, after the bajillionth hospitalization and some nasty letters to them from my doctor, they are reviewing everything and now I'm in the "we will make a decision soon" waiting period again, not the "take it to a judge" waiting period. The 'back payment' if the thing goes through won't even be enough to fix my house, my car, my newly broken oven or my hospital bills. Bankruptcy is very likely at this point. I will say this: I have learned to live a simple life. If I can get the house paid off, I think I can manage on less than $700 a month. Social security, you see, is based in part on what you make, and as I told people when I was making a living, science does not pay shit.
So this is my life...
Every morning, at about 7am, Phoenix wakes me up to take my normal pills, a pill for my thyroid, a pill for the high blood pressure the steroids cause (when I'm off them, I don't need that) a daily allergy pill, the tremor pill and a vitamin D. The thyroid pill plays nice with these pills, but none of the others, so we get them over with. Most of the time, I can fall back asleep for an hour, sometimes longer (the steroids and azathioprine mess up my ability to fall asleep, so sometimes at 7am I've only had 3-4 hours of sleep) and I avoid the mild upset tummy the thyroid pill causes for about 30 minutes.
By 11, I am usually out of bed, and it's time for the azathioprine and steroids, and the anti-pneumonia pill that goes with them. The anti-pneumonia pill, and also the steroids, cause me to be dizzy, so I'm usually also bruised from falling down, so I'm usually taking these around the same time as an over the counter painkiller and an assortment of over the counter anti-nausea drugs. While I was on 50mg of azathioprine, I would get sick about 40 minutes after taking it, being able to do nothing but lie on the floor for about 15 minutes, then it goes away like someone flicks a switch, and I can move around again. I should add that to move around, I am on supplemental oxygen, which means a long tube runs from my nose to a loud and very costly (electricity wise) to run machine at almost the center of my house. I can be off the machine when sitting still, but I'm supposed to use it while moving or at night, to keep from having a stroke...I regularly don't run it at night because I can't afford the electricity to run it. I avoid using it during the day by staying in one place. The good news is that it's almost impossible for my electric company to turn off my electricity for non-payment, because I'm on life support.
Since switching to 100mg of azathioprine, my tummy is upset when I take it at 11 am..it's upset when I go to bed 11 hours before that...it's upset all day. About 15 minutes after taking the pill, or 15 minutes after taking the second pill if I try to space them out during the day, I am gripped by norovirus-like projectile vomiting and diarrhea, and if I lose the pills in my stomach, I need to take them again. Most of the time, through sheer force of will, I can keep from puking, but that does nothing for what's going on at the other end. If I take the pills with yogurt, and maybe a piece of toast, I can usually keep them down. The business at the other end comes and goes for about 4 hours. By dinner time, if I am lucky, I can hold food down again. If I eat too late, however (as I did last night) the vomiting and pain keep me up most of the night.
I didn't mention the pain.
Imagine you have a hot poker in your stomach. Nothing you take relieves it, and when you press your hand to your stomach it feels like you are in the last month of pregnancy, and the baby is angry. What clothing you wear, eating, anything, effects this poker...So you spend the bulk of the day naked or in pajama bottoms and a bra, because anything putting pressure there brings you to tears. You find yourself sitting at a computer for 12, 16 hours a day, because getting up hurts too much and half the time you fall down, anyways...and there is always the stupid motherfucking tube if you want to do anything safely.
Oh, and there is the being lucky to get 1000 calories a day, but not losing weight, which is just not fair. To her credit, my wife, who was never taught to cook, can follow a recipe, so she can make food that is edible, but I was always the cook in the family, and now I can't use the stove, because of the damn oxygen tube, and the whole falling down thing.
So why do you put up with this, right? I am an advocate of checking oneself out when it goes too far, when shit can't be fixed. It doesn't bother me, and I'm not afraid of death. One of the treatments I use for nausea is, in fact, lethal at a large dose. I could take the whole bottle, pop two of the pills I have in my medicine cabinet and be late. As in The Late Labgrrl.
I don't do this because there is the promise of remission. I might go through this chemotherapy for a year, maybe even two, but then be fine for 3, 10, even 20 years. It is rare, but some people with this have gone into remission and never come out of remission. Some of them also got worse and died.
I am around 40 years old. I have been dealing with this now for three years. The median age of people affected by this group of lung diseases is 67, and half of them live another 10 years after diagnosis...but they are senior citizens when they get sick, and living another 10 years isn't assured for them without lung disease. We don't know what prognosis is like for someone who is 40, female, and whose only other medical complaint is essential tremor and needing to shed some pounds...we don't know. There aren't support groups, or walk-a-thons or a ribbon campaign, for this shit.
We don't know why it strikes. It doesn't look genetic, but since I got sick my mother has also gotten sick with a similar disease. Right now, my son has a bad chest cold and I lie awake at night wondering if I gave him my anti-body antibodies when he was breastfed, two decades ago. To make matters worse, my mom and I are in similar professions: so there is always the chance it's not genetics at all, but we're just more in a long line of science professionals dropped by autoimmune diseases...and there are a lot of them.
I don't check out because of the promise of remission. I believe in remission. I believe I will get better. I will always have a fucked immune system, so science is off the table for me as a career in the future.
But I would be lying if I didn't tell you that this sucks, and hard. This sucks, and hard. I didn't do anything to deserve this shit, but I'm the one who landed it, and I'm the one who is going to kick its ass...but it sucks.