Today felt like a bad dream.
You know that movie Groundhog Day, where Bill Murray's character wakes up every morning to a repeat of the exact same day as the one before, and the next day again the same? Just the thought of experiencing that has always given me a twinge of anxiety, and now I feel like I'm living it.
Every day I wake up, eat breakfast, go to the hospital, meet a new nurse (or two, or three), answer the same exact questions, and explain the same things over and over about the possible side effects and the order of my treatments: first it's a flush of both ports of my IV line to ensure neither has clotted (the other day one had, and let's just say the de-clotting was a painful and frightening experience).
Then it's a two-tiered blood draw from one of the ports (they "waste" the first draw then send the second to the lab), followed by a 500 mL saline drip at the rate of 250 mL per hour, succeeded in turn by a drip of Dextrose 5 to clear the IV line, since saline is incompatible with the Amphotericin. The Ampho is a 250 mL bag that runs at 100 mL per hour (and I have to inform each nurse that if they don't program the IV for about 50 mL overfill, it will stop one or twice before it's done).
Then it's a little more drip of the Dextrose, and one last saline flush of both ports before re-wrapping my piccline and sending me on my merry way. Not to mention, about half an hour before they start the Ampho, I get to swallow a cocktail of pre-medications — 5 pills in all, the combination of which keeps me from ending up back in the ICU. Plus there is plenty of repeated checking of my vital signs throughout the approximately seven hour process.
I also have to take 5 pills of the secondary drug every 12 hours, which was reduced from every six hours because my daily blood work was showing my kidney function to be in rapid decline, despite the addition of the saline bags. So yeah, I sometimes have extra saline too, depending on how all those numbers look that day on a sheet of paper I don't pretend to understand.
In addition to the kidney problems the drugs are causing, my magnesium levels have been affected (for which I've been given even more pills), and as of today, I am officially anemic...woo hoo.
To add insult to injury, over the past few days I've developed a virus. It started out with a little bit of a sore throat and quickly turned into a full blown head cold that brought on an awful migraine. If I thought I couldn't get any more miserable, I was proven emphatically wrong.
Yesterday I felt so sick I could barely get out of bed to go to the hospital, and today my body was so weak I had to take the dreaded wheelchair ride to my short stay room. (I refuse the wheelchair as often as they'll let me, but today I was afraid I would fall over if I tried to make it as far as the elevator without assistance.)
On top of the infection in my brain, and the virus in my system, the drugs are beating me down. Hard.
I remember the day my infectious disease specialist told me she was going to let me go home, I asked her: "I know I won't be able to start exercising right away, but can I take walks around the neighborhood and stuff like that?" The question seems like a joke now, because I can barely walk from the car to my front door when I get home from the treatments. Basically, all I can do is lay in my bed, and for the first couple of days of this virus, all I could do was sleep.
Another lovely effect of the drug is it gives me extremely vivid, extremely strange dreams. Not always bad dreams per se, just really weird. And really real.
Last night, I'm still not sure if I was dreaming, hallucinating, or somewhere in between, but I woke up in sheer, inconsolable terror. I was so panicked by what I felt — or thought I felt — that my dad had to sleep on the floor of my bedroom. (Mind you, I have lived by myself for about eight years, so needing a parent in my room to sleep...well, you get the idea.)
This morning, when I woke up for breakfast and my Groundhog Day hospital trip, all I could do was cry. I didn't want to go to the hospital today. I didn't want to go through the IV flush, then the blood draw, then the saline, then the dextrose, then the pills, then the Ampho, then more dextrose and more flushes. I didn't want to do any of it anymore. I just wanted to wake up from this nightmare.
I was still crying when they put me in the hospital bed and hooked me up for my first round of vital signs. I was crying so hard that my blood pressure registered at 141 over 80 (my baseline is around 118 over 60).
But my family was there reminding me why I have to keep doing this, and the Facebook messages and blog comments and texts and calls from my friends and family and strangers were pushing me along.
Earlier I had called my best friend sobbing on the phone when I still couldn't get out of bed, and he reminded me of what the specialist told me when I asked her how long ago I could have contracted this disease. He asked me if I remembered the doctor's face when she said, "Let's just say, if you were already sick when we first saw the lesions, we're surprised you made it this long."
My best friend told me to be glad I'm alive to be upset about going to the hospital. And I guess that's the basic stuff I have to hold on to. Not much of a silver lining, when you think about it. At least not the kind I expect to find, but it's what I've got.
My virus seems to be waning a bit, and I had some energy tonight to type out an update. But now I must lay down my weary head, pray against nightmares, and prepare myself to look at the bright side of tomorrow's Groundhog Day…that I'm alive to despise it.
If all goes as planned — and I'm trying to be open to the reality that it might not — I'll have only 23 more wake-ups until Punxsutawney Phil sees his shadow and I can move on to a new routine.
Thanks as always for keeping me in your thoughts and prayers. And thanks for understanding that I don't necessarily have the physical or emotional energy to return phone calls, and answer emails and whatnot just yet. I promise I'm doing the best I can...
Love,
-Molly
You know that movie Groundhog Day, where Bill Murray's character wakes up every morning to a repeat of the exact same day as the one before, and the next day again the same? Just the thought of experiencing that has always given me a twinge of anxiety, and now I feel like I'm living it.
Every day I wake up, eat breakfast, go to the hospital, meet a new nurse (or two, or three), answer the same exact questions, and explain the same things over and over about the possible side effects and the order of my treatments: first it's a flush of both ports of my IV line to ensure neither has clotted (the other day one had, and let's just say the de-clotting was a painful and frightening experience).
Then it's a two-tiered blood draw from one of the ports (they "waste" the first draw then send the second to the lab), followed by a 500 mL saline drip at the rate of 250 mL per hour, succeeded in turn by a drip of Dextrose 5 to clear the IV line, since saline is incompatible with the Amphotericin. The Ampho is a 250 mL bag that runs at 100 mL per hour (and I have to inform each nurse that if they don't program the IV for about 50 mL overfill, it will stop one or twice before it's done).
Then it's a little more drip of the Dextrose, and one last saline flush of both ports before re-wrapping my piccline and sending me on my merry way. Not to mention, about half an hour before they start the Ampho, I get to swallow a cocktail of pre-medications — 5 pills in all, the combination of which keeps me from ending up back in the ICU. Plus there is plenty of repeated checking of my vital signs throughout the approximately seven hour process.
I also have to take 5 pills of the secondary drug every 12 hours, which was reduced from every six hours because my daily blood work was showing my kidney function to be in rapid decline, despite the addition of the saline bags. So yeah, I sometimes have extra saline too, depending on how all those numbers look that day on a sheet of paper I don't pretend to understand.
In addition to the kidney problems the drugs are causing, my magnesium levels have been affected (for which I've been given even more pills), and as of today, I am officially anemic...woo hoo.
To add insult to injury, over the past few days I've developed a virus. It started out with a little bit of a sore throat and quickly turned into a full blown head cold that brought on an awful migraine. If I thought I couldn't get any more miserable, I was proven emphatically wrong.
Yesterday I felt so sick I could barely get out of bed to go to the hospital, and today my body was so weak I had to take the dreaded wheelchair ride to my short stay room. (I refuse the wheelchair as often as they'll let me, but today I was afraid I would fall over if I tried to make it as far as the elevator without assistance.)
On top of the infection in my brain, and the virus in my system, the drugs are beating me down. Hard.
I remember the day my infectious disease specialist told me she was going to let me go home, I asked her: "I know I won't be able to start exercising right away, but can I take walks around the neighborhood and stuff like that?" The question seems like a joke now, because I can barely walk from the car to my front door when I get home from the treatments. Basically, all I can do is lay in my bed, and for the first couple of days of this virus, all I could do was sleep.
Another lovely effect of the drug is it gives me extremely vivid, extremely strange dreams. Not always bad dreams per se, just really weird. And really real.
Last night, I'm still not sure if I was dreaming, hallucinating, or somewhere in between, but I woke up in sheer, inconsolable terror. I was so panicked by what I felt — or thought I felt — that my dad had to sleep on the floor of my bedroom. (Mind you, I have lived by myself for about eight years, so needing a parent in my room to sleep...well, you get the idea.)
This morning, when I woke up for breakfast and my Groundhog Day hospital trip, all I could do was cry. I didn't want to go to the hospital today. I didn't want to go through the IV flush, then the blood draw, then the saline, then the dextrose, then the pills, then the Ampho, then more dextrose and more flushes. I didn't want to do any of it anymore. I just wanted to wake up from this nightmare.
I was still crying when they put me in the hospital bed and hooked me up for my first round of vital signs. I was crying so hard that my blood pressure registered at 141 over 80 (my baseline is around 118 over 60).
But my family was there reminding me why I have to keep doing this, and the Facebook messages and blog comments and texts and calls from my friends and family and strangers were pushing me along.
Earlier I had called my best friend sobbing on the phone when I still couldn't get out of bed, and he reminded me of what the specialist told me when I asked her how long ago I could have contracted this disease. He asked me if I remembered the doctor's face when she said, "Let's just say, if you were already sick when we first saw the lesions, we're surprised you made it this long."
My best friend told me to be glad I'm alive to be upset about going to the hospital. And I guess that's the basic stuff I have to hold on to. Not much of a silver lining, when you think about it. At least not the kind I expect to find, but it's what I've got.
My virus seems to be waning a bit, and I had some energy tonight to type out an update. But now I must lay down my weary head, pray against nightmares, and prepare myself to look at the bright side of tomorrow's Groundhog Day…that I'm alive to despise it.
If all goes as planned — and I'm trying to be open to the reality that it might not — I'll have only 23 more wake-ups until Punxsutawney Phil sees his shadow and I can move on to a new routine.
Thanks as always for keeping me in your thoughts and prayers. And thanks for understanding that I don't necessarily have the physical or emotional energy to return phone calls, and answer emails and whatnot just yet. I promise I'm doing the best I can...
Love,
-Molly