I have no idea why there was this random ass post on my blog about google.com for the last few days, exactly when I didn't check any of emails or anything. I don't remember even going on my blog that day....Wow. I think there's a ghost around here doing weird things like that, at least that's what one of the Nursing Assistants said to me. I responded by laughing, because I thought she had to be joking, why would she tell patients in a bone marrow transplant ward that there are ghosts in this place.."some folks just never wanna leave us."
I have to quickly describe fast I've deteriorated in the last week, because I just can't focus for that long on one thing anymore. I started getting low fevers during the nights and just in a couple days worth of time, they would last 24/7 and the average would be 103. On Thursday night, I started shaking vigorously as if I had a seizure for at least 30 minutes. They had to put me under like 7 blankets and even then it took a while for me to get to a physically stable place. This was around 4am, so I thought maybe it has something to do with just being really cold at night, but no it happened again with the next fever, and they finally had to start giving me tylenol to try to bring the fevers down as quickly as possible. Tylenol, on top of all the other drugs I'm taking causes a good amount of liver damage, so they try to use it at least as possible. As to the cause of the fevers, the doctors initially concluded that it was engraftment fevers and I was just having an extremely strong engraftment reaction, meaning paying the price for every single cell that's growing in my body. Needless to say, this kept me in bed for prettty much 95% of the time, making me so weak that the only way I could walk was by holding my Mom's hand. I can't sit up without support or else my back hurts for hours.
Yesterday, to further investigate the reason behind the bloated feeling and heightened liver enzymes, they did an ultrasound test, which looks at your liver, pancreases, etc. They found swelling in my liver which explains the bloated feeling a lot. Other than that it didn't really explain the amount of pain I feel when I walk around in my stomach. This morning though, the doctors came in and told me I had a CMV infection, which is a virus that most people have in their bodies, but it doesn't do anything to you unless if you don't have an immune system. Now, this explains everything. This is the reason why I've been feeling almost as if I'm in another time period, a highly painful one where I don't know how I got here or how I'll get out.
I hate this. I can't talk to anyone, my mouth gets very dry. If I look at the computer screen, my head starts to explode. So....that leaves me with the option of sleeping all day...I like to call it an option, because I could chose not to take the painkiller for my stomach and just sit here in pain but be awake to be able to do somethings at least and keep my brain alive. Give and take.
Tuesday, January 24, 2012
Wednesday, January 18, 2012
Life of a Young OG
Last week was heaven compared to how I feel today. I wish I took more advantage of it.
About five days ago is when this monstrosity started. Before that, yes I was pretty uncomfortable with everything I listed in the last post, but I had no idea all of that would compound and attack me even harder.
The mucositis is at the point where I can no longer eat anything significant. Not only is the first layer of skin from inside my mouth is completely gone, but there's a poison-like taste that's always present. The worst part though is my throat, I can't swallow anything at all. It feels like I'm swallowing glass even when just a little bit of my own saliva trickles down. You don't realize how much you use the swallowing mechanism until you're in a condition like this, because I have to now get up every minutes and spit out my own saliva, because that's the only painless way to get rid of it. I tried eating small things and what I have to do is chew everything down to a mushy level and then let small amounts trickle down slowly. Anything too big and it feels like my throat is trying to eat itself. I have ulcers from my mouth all the way to the other end of the GI tract and usually not enough platelet blood cells to prevent bleeding from happening. Every time I spit, a little bit of blood comes out. My nose gets very dry, because the air in the rooms is so filtered out that there's basically no humidity. The first layer of skin in my nose is also gone, leading to little clumps of dried up blood always being in there. During the middle of the night one night, my nose was so clogged with dried up blood that I could barely get air through, so I got up and did the worst thing you can do in this situation, which is to blow your nose. It took hours and a platelet transfusion to stop the bleeding. I get platelets every single night now, because my body is basically not producing any and their lifespan is about 6-8 hours. So they put them in and then they die within like a day leading us to repeat the whole thing over, which means transfusions during the night and no sleep as they have to take your vitals every 15 minutes when receiving blood products.
Not being able to eat for the last few days has been devastating. I got up to walk today and realized I could barely do it. In order to help the pain, the doctors suggested Morphine (through the IV) to see if it would make any difference in being able to eat. All it did was make me hallucinate and extremely groggy and did nothing to help the pain. They increased the dose the next day and gave me a pump with a remote attached to it so that I could push the button whenever I wanted it and it would infuse 1mg of the pain med. Right around that time, I realized if I start becoming dependent on pain killers, it would actually make me weaker in the long run, because I would just lay in bed all day and not walk at all. Then, the next thing the doctors suggested is replacing Morphine with Dilouded (probably the strongest pain killer) and take a dose before every meal and try to get as much food down as possible. Let me tell you one thing, Dilouded is no joke. It's usually given to gunshot victims, that's the pain standard one has to be in to be able to get it. I could have given myself a dose of it every 10 minutes with the pain pump with the push of one button, leading to a nasty addiction. If wasn't smart enough to realize the consequences of just always being delirious and on narcotics, I would've kept going with the doctors' "solution" and ended up with a serious problem. The whole problem is that the pain is only there when the mechanism of swallowing is engaged and none of these strong narcotics helped with that. Dilouded makes you feel like a zombie for a good while. Imagine it being like a hangover times 100.
On Average, this is what the statistics have been the last few days:
The goal is to get out of here in one piece and walk out on my two feet. I refuse to be wheeled out of this place; I've been working too hard to not finish strong. It's not very encouraging when every nurse I have always tells me "it gets worse before it gets better." This is by far the second worst time of my life, but I have the reward at the end on my mind. I have amazing friends who have made great gestures and shown me what my success means to them. Thanks to everyone who attended Aishwarya's performance and helped out with the event. At my worst, I always think about how desperately I want there to be more good memories with the people I'm close to. I have no energy of my own at this point, but every time I reach out to them, I receive the greatest gift that I can possibly get at this point and that is comfort. Comfort in knowing they're just as eager to see me get out of here as my own family and myself.
#thuglife
About five days ago is when this monstrosity started. Before that, yes I was pretty uncomfortable with everything I listed in the last post, but I had no idea all of that would compound and attack me even harder.
The mucositis is at the point where I can no longer eat anything significant. Not only is the first layer of skin from inside my mouth is completely gone, but there's a poison-like taste that's always present. The worst part though is my throat, I can't swallow anything at all. It feels like I'm swallowing glass even when just a little bit of my own saliva trickles down. You don't realize how much you use the swallowing mechanism until you're in a condition like this, because I have to now get up every minutes and spit out my own saliva, because that's the only painless way to get rid of it. I tried eating small things and what I have to do is chew everything down to a mushy level and then let small amounts trickle down slowly. Anything too big and it feels like my throat is trying to eat itself. I have ulcers from my mouth all the way to the other end of the GI tract and usually not enough platelet blood cells to prevent bleeding from happening. Every time I spit, a little bit of blood comes out. My nose gets very dry, because the air in the rooms is so filtered out that there's basically no humidity. The first layer of skin in my nose is also gone, leading to little clumps of dried up blood always being in there. During the middle of the night one night, my nose was so clogged with dried up blood that I could barely get air through, so I got up and did the worst thing you can do in this situation, which is to blow your nose. It took hours and a platelet transfusion to stop the bleeding. I get platelets every single night now, because my body is basically not producing any and their lifespan is about 6-8 hours. So they put them in and then they die within like a day leading us to repeat the whole thing over, which means transfusions during the night and no sleep as they have to take your vitals every 15 minutes when receiving blood products.
Not being able to eat for the last few days has been devastating. I got up to walk today and realized I could barely do it. In order to help the pain, the doctors suggested Morphine (through the IV) to see if it would make any difference in being able to eat. All it did was make me hallucinate and extremely groggy and did nothing to help the pain. They increased the dose the next day and gave me a pump with a remote attached to it so that I could push the button whenever I wanted it and it would infuse 1mg of the pain med. Right around that time, I realized if I start becoming dependent on pain killers, it would actually make me weaker in the long run, because I would just lay in bed all day and not walk at all. Then, the next thing the doctors suggested is replacing Morphine with Dilouded (probably the strongest pain killer) and take a dose before every meal and try to get as much food down as possible. Let me tell you one thing, Dilouded is no joke. It's usually given to gunshot victims, that's the pain standard one has to be in to be able to get it. I could have given myself a dose of it every 10 minutes with the pain pump with the push of one button, leading to a nasty addiction. If wasn't smart enough to realize the consequences of just always being delirious and on narcotics, I would've kept going with the doctors' "solution" and ended up with a serious problem. The whole problem is that the pain is only there when the mechanism of swallowing is engaged and none of these strong narcotics helped with that. Dilouded makes you feel like a zombie for a good while. Imagine it being like a hangover times 100.
On Average, this is what the statistics have been the last few days:
- Daily Caloric Intake: 500
- Daily Caloric Output: 1000
- # of hours spent in bed: 15
- # of hours actually slept: 6
- # of times I leave my room daily: once
- Activity level: check email, maybe watch Friends and shower
- How long it takes to eat one cookie: 1 hour
- # of days here: 18 (feels like 18 years)
- White blood cell count: 0
- Fatigue (on a scale of 1-10): 10. I have never before in my life said 10 for fatigue level.
- Pain (on a scale of 1-10): 7, only when I swallow.
The goal is to get out of here in one piece and walk out on my two feet. I refuse to be wheeled out of this place; I've been working too hard to not finish strong. It's not very encouraging when every nurse I have always tells me "it gets worse before it gets better." This is by far the second worst time of my life, but I have the reward at the end on my mind. I have amazing friends who have made great gestures and shown me what my success means to them. Thanks to everyone who attended Aishwarya's performance and helped out with the event. At my worst, I always think about how desperately I want there to be more good memories with the people I'm close to. I have no energy of my own at this point, but every time I reach out to them, I receive the greatest gift that I can possibly get at this point and that is comfort. Comfort in knowing they're just as eager to see me get out of here as my own family and myself.
#thuglife
Friday, January 13, 2012
Monsters Inc.
Day +7:
+7 means 7 days have elapsed from the time of my transplant til now. This is how they count the rest of your days in the hospital and I guess the rest of your life after transplant. It's as if they're adding bonus days to what could've been my last day ever. Let's say when I turn 30, I would say I'm 24 + 5 years and 88 days old, with everything after the + being a result of this miraculous transplant process.
Many people are under the assumption that the transplant process is a surgical procedure where after it's performed, you're done at the hospital and you know whether it was successful or not. This is not true at all...I'm going to explain what happens next and why the Bone Marrow Transplant (BMT) is the most complicated procedure in all of medicine.
First week you spend at the hospital, they give you chemo and radiation to delete all the cells you currently have in your bones (at least that's the goal), which is called the prep phase. Then on 7th day of your hospital stay, as known as Day 0 on your BMT calender, they give you the donor cells, which looks just like a big bag of blood that they infuse over your IV line, like a blood transfusion. Then the week after the transplant day, your body starts to process everything they've done to it, meaning cells in your body start dying to make room for the new donor ones. When all of the host's cells are dead, you reach the minimum point of your blood cell counts and you stay at zero for about 2 weeks or more. Then the new marrow engrafts and starts producing new cells and your immune system cells grow over the next few months gradually.
Now, during that low is when you experience the worst side-effects of all the toxic drugs they've given you so far. Right after the transplant day, all the nurses told me to enjoy the couple days of an energy boost, because apparently after that I would hit rock bottom. Over the last 7 days, I have slowly reached my lowest point, feeling worse and worse with every day after the transplant, to point where I have no immune system at all today. During the process of reaching this point, here's what happens in your body:
All of the above are getting worse as days go on and will only start resolving once my cells grow back. There's no way of predicting how long that will actually take and there are about a million things that can go wrong in the meantime when you have no immune system. If I catch even a simple virus, I will find myself in a critical condition in the ICU fighting for my life (repetition of events that transpired in March/April 2010). At that point, when they have completely emptied out your bones and killed off your immune system, it's merely a question of how good the ICU doctors are in keeping you alive until your transplanted cells start to grow, but getting critically ill before the engraftment of new cells can lead to failure of any engraftment at all, meaning overall transplant failure. I don't even know what they do in situations like those...but these are the type of complications that occur in BMT patients, leading the outcome of the procedure to be highly unpredictable. One of the doctors I consulted before deciding to go ahead with this described the uncertainty of the outcome as "the [inherent] nature of the beast" which I must wrestle with everything on the line, hoping to come out having won it all. I guess you can't win it all without risking it all, eh? I'm still millions of miles away from that moment though, so I can't allow myself to even imagine what victory will taste like, because I don't want to jinx it.
What does it feel like to know your bones are completely empty? It's an unusual feeling resulting from a combination of lethargy and fatigue. I have to wear a mask, a gown and gloves when I leave my room and anyone who enters mine has to do the same. All of the patients in the BMT ward are under these precautions - it's almost like a cult of a sort. All 16 of us look like trained monsters connected to huge IV machines, with no hair, not even eyebrows sometimes, usually confined to our rooms and with every passing moment, imagining the day we will be done with this grueling process and come out and destroy the world. When you pass by another patient in the hallway, even if no words are exchanged, there's an exchange of silent respect that can only be communicated to someone going through exactly the same thing as you. They feel the same pain, they have the same problem, and there is no bond stronger than mutual suffering. I will say this though, being the youngest person here is definitely in my favor...a lot of the other patients have so much trouble walking and managing day to day activities. It breaks my heart to see one of the rooms with "BIOHAZARD!!" and "DO NOT ENTER!!" signs. I'm assuming the poor guy/lady has some sort of a contagious infection or something that confines them to their room. There's nothing sadder than that. I feel so lucky every time I walk by his room.
Speaking of monsters, I have a calender in my room that my friend Nicole sent me with a lot of pictures from when we both attended UVA. Most nurses come into my room and ask me who the person in those photos is, because it looks nothing like me anymore. I resemble Voldemort more and more with each passing day and wish I had red contacts for my eyes, so I can take a picture and freak people out. Also, one nurse said I look like I'm 14 years old and thought that my little bro/sis were older than me...I shall take this as a complement considering I'm about to be pretty old this year.
+7 means 7 days have elapsed from the time of my transplant til now. This is how they count the rest of your days in the hospital and I guess the rest of your life after transplant. It's as if they're adding bonus days to what could've been my last day ever. Let's say when I turn 30, I would say I'm 24 + 5 years and 88 days old, with everything after the + being a result of this miraculous transplant process.
Many people are under the assumption that the transplant process is a surgical procedure where after it's performed, you're done at the hospital and you know whether it was successful or not. This is not true at all...I'm going to explain what happens next and why the Bone Marrow Transplant (BMT) is the most complicated procedure in all of medicine.
First week you spend at the hospital, they give you chemo and radiation to delete all the cells you currently have in your bones (at least that's the goal), which is called the prep phase. Then on 7th day of your hospital stay, as known as Day 0 on your BMT calender, they give you the donor cells, which looks just like a big bag of blood that they infuse over your IV line, like a blood transfusion. Then the week after the transplant day, your body starts to process everything they've done to it, meaning cells in your body start dying to make room for the new donor ones. When all of the host's cells are dead, you reach the minimum point of your blood cell counts and you stay at zero for about 2 weeks or more. Then the new marrow engrafts and starts producing new cells and your immune system cells grow over the next few months gradually.
Now, during that low is when you experience the worst side-effects of all the toxic drugs they've given you so far. Right after the transplant day, all the nurses told me to enjoy the couple days of an energy boost, because apparently after that I would hit rock bottom. Over the last 7 days, I have slowly reached my lowest point, feeling worse and worse with every day after the transplant, to point where I have no immune system at all today. During the process of reaching this point, here's what happens in your body:
- Mucositis: Cells in your mouth and the rest of the GI tract die slowly resulting in a swollen tongue with cuts all over your mouth and throat. The rest of the lining of cells down your GI tract, all the way to the other end is completely destroyed. Hence, ulcers from one end to the other. On Day +1, this was bearable, but now it's at the point where they're giving me morphine before meals so I can swallow tiny amounts of food. Oh and it hurts to even talk.
- Bloody nose: my nose is currently blocked with dried up blood that I'm not supposed to blow out as it will cause additional nose bleeding. All thanks to a low platelet count.
- Nausea/Vomiting: I have no appetite. When I get hungry, I try to eat, but nothing stays down. If you know me at all, you know how much I love food, but even the thought of eating makes me nauseous right now.
- Headaches: At this point, they have no idea which one of the thousand drugs they've given me is causing pounding headaches, but they're blaming the chemo for now.
- Diarrhea: If by some miracle I do manage to put something in my stomach, it comes right out.
- Insomnia: Even IV Benadryl has failed. I stay awake through IV Morphine also.
- Fatigue: I'm not talking about the simple 'I have no energy' kind of tiredness...When I wake up, it feels like someone took a baseball bat and hit me in the head several times and then proceeded to take a hit at every part of the rest of my body.
All of the above are getting worse as days go on and will only start resolving once my cells grow back. There's no way of predicting how long that will actually take and there are about a million things that can go wrong in the meantime when you have no immune system. If I catch even a simple virus, I will find myself in a critical condition in the ICU fighting for my life (repetition of events that transpired in March/April 2010). At that point, when they have completely emptied out your bones and killed off your immune system, it's merely a question of how good the ICU doctors are in keeping you alive until your transplanted cells start to grow, but getting critically ill before the engraftment of new cells can lead to failure of any engraftment at all, meaning overall transplant failure. I don't even know what they do in situations like those...but these are the type of complications that occur in BMT patients, leading the outcome of the procedure to be highly unpredictable. One of the doctors I consulted before deciding to go ahead with this described the uncertainty of the outcome as "the [inherent] nature of the beast" which I must wrestle with everything on the line, hoping to come out having won it all. I guess you can't win it all without risking it all, eh? I'm still millions of miles away from that moment though, so I can't allow myself to even imagine what victory will taste like, because I don't want to jinx it.
What does it feel like to know your bones are completely empty? It's an unusual feeling resulting from a combination of lethargy and fatigue. I have to wear a mask, a gown and gloves when I leave my room and anyone who enters mine has to do the same. All of the patients in the BMT ward are under these precautions - it's almost like a cult of a sort. All 16 of us look like trained monsters connected to huge IV machines, with no hair, not even eyebrows sometimes, usually confined to our rooms and with every passing moment, imagining the day we will be done with this grueling process and come out and destroy the world. When you pass by another patient in the hallway, even if no words are exchanged, there's an exchange of silent respect that can only be communicated to someone going through exactly the same thing as you. They feel the same pain, they have the same problem, and there is no bond stronger than mutual suffering. I will say this though, being the youngest person here is definitely in my favor...a lot of the other patients have so much trouble walking and managing day to day activities. It breaks my heart to see one of the rooms with "BIOHAZARD!!" and "DO NOT ENTER!!" signs. I'm assuming the poor guy/lady has some sort of a contagious infection or something that confines them to their room. There's nothing sadder than that. I feel so lucky every time I walk by his room.
Speaking of monsters, I have a calender in my room that my friend Nicole sent me with a lot of pictures from when we both attended UVA. Most nurses come into my room and ask me who the person in those photos is, because it looks nothing like me anymore. I resemble Voldemort more and more with each passing day and wish I had red contacts for my eyes, so I can take a picture and freak people out. Also, one nurse said I look like I'm 14 years old and thought that my little bro/sis were older than me...I shall take this as a complement considering I'm about to be pretty old this year.
All Mutants are required to wear wrist bands that identify them at all times...you can only remove it when you're getting out. Some of the most liberating moments of my life have been the exact second I cut these off of my arm after getting discharged.
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