I can't believe the state of mind I was in when I wrote that last post...how did I forget everything I've ever learned about life and fall into that weak and pessimistic attitude of someone who's willing to give up? Well, that's what this process does to you. I've been sick as hell before to the point where no one knew if I would ever even walk again, everyone knows that, but I've never been pushed into a hopeless and lethargic condition like the one I've been in recently. I stopped talking to everyone, literally. I didn't even really talk to my siblings or my parents even though they were with me, because I would just try to sleep all day and hope that the time just passes in my deliriousness and that one day the pain just stops. I did this for about 2 weeks during the time where my stomach was all filled with fluid causing episodes of pain every night where I would scream and throw things across the room, because there was just no way to stop it.
I would ask the doctors every day what exactly was wrong and if it would get better and I would never get a straight answer. All they would say is, "yes it does get better for a lot of people and this could be any of the number of complications that transplant patients experience in the second month as your body reacts to the extremely toxic chemo and radiation we have given you, but we can't tell you for sure that it'll get better or how long it'll take." Now, in the past, the treatment has been mentally easier to handle, because the doctors would tell me "you're going to do chemo for x amount of time, then you can go home." There has always been an end state or the end of chemo cycles where I would get breaks before having to go back in. Here, there are no breaks. You go in to the hospital and you stay there for at least more than a month inpatient (definitely a lot longer for me) and then they let you get out with the condition that you stay really close by and come in for a few hours every day to get the necessary drugs, transfusions, etc. I've been doing this for a few days now and the difference in how I feel is tremendous.
The outpatient clinic is called IPOP (Inpatient/Outpatient) which means you go to the hospital every day and you're monitored, but at the end of the day you can go to the local housing next to the hospital which are basically little apartments. This means I have to walk to and from the hospital every day. I could get a wheelchair and it would be a lot easier, but I realize that I need to start being as mobile as possible, because I have lost every ounce of strength I had in my body. I am literally all skin and bones and some swelling with the fluid that's still leftover in my stomach. A few days ago, walking was a lot harder with an extra 10 lbs. of fluid in my belly, but I kept doing it even if it was mostly with a hunch in my back.
A lot has changed in just the last several days actually. The stomach condition has improved a great amount and I no longer take pain killers on a regular basis to get through the nights. How it started improving, I have no idea about that. It slowly started happening and life has become much easier. I still have a lot of other issues like the liver damage that could be considerably serious if in the next couple weeks we don't see improvement in the liver numbers. They will probably end up doing a liver biopsy (pretty risky procedure) to find the actual cause of the problem, but so far they've just been observing the trend. For a while, it was healing and the numbers were coming down, but they started fluctuating again recently. Other than that, my body is pretty much not producing its own blood yet, so I end up getting transfusions on a regular basis. I'm always at risk for bleeding, because I'm always at a critically low level of platelets (the cells that clot blood in your body and stop the bleeding.) It takes about 2 months after the transplant for your body to start producing its own platelets, so in the meantime, all someone would have to do to kill me is hit my head against something really hard or give me a medium size cut and the bleeding would be impossible to stop. Also, every time my nose is runny and I blow it, blood flows out. Every time I brush my teeth, my gums bleed. I find a new bruise somewhere on my body every single day. This is just how it's been since the last two months. My nose used to be clogged with giant blood clots during the first month of the transplant that I would have to pull out in order to be able to breathe. I have never been more freaked out in my life than one night where my left nostril was pretty much closed up and I dug around and pulled out a blood clot the size of a quarter. No joke. I saved it and showed it to the doctors and all they said was, "yeah try not to pull those out, because new clots will form in its place because your body can't heal the wound or control where the blood is going right now." I kept pulling them out anyway because that's the only way I could breathe.
Anyway, apart from the physical problems, I realized I was losing this game mentally. I had to make a comeback. I had panic attacks almost every day all because I felt like the doctors didn't know how to fix what was wrong with my body. They never had anything new to say and I felt worse and worse as each day went on. If you know anything about me, you know that I have an endless amount of patience and mental strength, so for me to start questioning whether I can do this anymore or not, it must have been a pretty much impossible situation to be optimistic in. I had to pretty much slap myself across the face and say what's wrong with you...how can you not know whether you want this any more or not? I sat and talked to my brother that day for 3 hours and caught up on everything he's been doing. Then I thought about my sisters and I have to be there when they graduate and get jobs. How could I be so selfish and want to quit when my parents have literally put everything they have into getting me better for the last two years? I have to be around to take care of them when they need me in old age like they're taking care of me now. I had to go all the way to the basics and think about my family and friends to finally realize I was letting the pain get to me. I thought I needed help to get out of that funk, but then after remembering what has made my life amazing so far, I knew I was back in the game. I just had to turn that switch back on.
Yes, the steaks are much higher and this process has pushed me beyond exhaustion, but that just means I need to become more ruthless. You don't become a legend complaining about your circumstances and misfortunes; you push them out of your mind even if your body is in pain and trust your own ability to just make it to the next day. That's the basic strategy in this game: one day at a time, just get to the next day. Today, I have no doubt that over time my body is going to heal; I'm giving it no choice but to get better. I didn't come this far to lose. I know no one else but me has what it takes to come out of something like this and when I do, trust me you will know. It's going to be a long process to get back to even the shape I was in before I relapsed, but being given another chance to live, I will live like there's a fire under my ass every single day. I don't understand how people just sit and waste their 20's doing things they don't like or being unhappy. I now know the secret to life. Once I can physically do the things that I want to do, you better stay out of my way or run with me, because it's time for shit to start going my way. It's time to start succeeding instead of watching everyone else do big things. Enough is enough.
A lot of times I feel like I have accomplished nothing since I graduated. I only worked for a few months before I got tied up with this where everyone else is already in grad school or getting promoted and I have wasted two years of life in hospitals. Then I realized, everyone else has been doing the same thing as each other. How much have they really learned about life working the same job for two years? How many of them can say they came out of a life and death situation twice and in between undid the damage almost completely? I should feel accomplished that by the time I turn 25, I would have not only once, but twice overcome a life-threatening disease. I have the rest of my life to work and do what everyone else does and when I start, my desire to succeed will be deeper than most people in this world. The confidence I have now just cannot be matched.
That's why I feel like the Jordan reference doesn't even do this post justice, because I have to work harder than him. I thought about the saying "only the good die young" for a while until I realized that's definitely not going to be the case here. Why? Because I'd rather be a living legend.
Monday, February 20, 2012
Saturday, February 11, 2012
Can I Just Rest in Peace?
I haven't answered my phone, email, texts in weeks now. I've been a sick, sick human being and the reason why I'm able to even write this is because of some serious pain killers. Don't freak out after reading this, this has been my train of thought for weeks now - it's going to be highly angry, paranoid, and somewhat pessimistic due to always being blinded by pain.
About three weeks ago, when the Mucositis (which feels like a joke now) started resolving, something just randomly went wrong with with my liver and kidneys, leading them to fail for a short period of time. This created about 20 lbs. of extra fluid and waste to accumulate in my body. The doctors came in and threw around terms like CMV virus and Vino Occlusive Disease (VOD) and at the time I didn't realize just how serious these complications were going to be. My concern in those days was to see my cells start growing, which thankfully they did as they definitely helped in resolving the CMV virus attack on my body. They gave me a lot of medicine to try to get rid of extra fluid in the body, but for some reason there's about 7-10 lbs. worth of swelling in my abdomen that makes it look like I'm carrying triplets right now. It makes me feel like I've eaten 50 times as much as I normally eat and consuming even drops of water is an impossible task. I haven't eaten in 5 weeks now, I don't know how it's possible for a human being to survive without solid food for so long. Whatever liquids I do manage to put into my stomach, come straight out as diarrhea. Having that much extra fluid weight around the belly makes it feel like there's a stress band tied right below my chest, all the way around that's going to explode even when I'm simply just breathing. Forget about trying to find a way to sleep. No matter which side you sleep on, it's so uncomfortable to bear the weight of my own belly that basically what I have to do is lay on my back and keep my legs bent. All of this is creating intense pressure for my back, leading to rely on painkillers to be able to sleep. During the day, I have to walk around to stay mobile and use the restroom etc., but it's absolutely draining to even these things.
This condition alone has messed up my vitals in all sorts of ways. It makes it harder to breathe as everything is pushing up into my chest. My blood pressure and heart rate are out of the roof most of the time. I always gets fevers too, but there's a whole another set of issues that brings with it.
What are the doctors saying? Nothing. They don't know how to fix this. They've seen it before, and yeah it gets better for some people over time. Will it get better for me? We don't know. That's what I meant before I started this by saying once I go in, I have no idea if I'll even come out of this in one piece...it's usually not the transplant itself that kills people, but serious complications like the ones described above that eventually just do not resolve. I don't know how long I'm gonna be in the hospital. I don't know how long I'm gonna be sane. I've started throwing things across the room, because I have multiple panic attacks every day and I know there's literally nothing I can do to control what's happening in my body. I see other patients reaching day 60 and walking out of here and I think to myself how lucky those people are...I compared myself to a homeless person today and wondered who had a more comfortable life at this point. At least the homeless person can still enjoy and taste food and walk around. I would give anything in this world right now to be able to sit down and just drink a cold glass of water and not worry about how the pain from doing that will almost try to kill me within the next hour. Or how my skin is so dry to the bone that no matter what kind of lotion I put on it, I scratch it all night and being low on blood just makes me bleed underneath the skin by doing that .
Everyone I talk to tells me, "you came out of worse before, you're so strong, just hang in there." You know what, what happened last time was basically a miracle. Am I gonna have two miracles in one lifetime? And I am not strong, I am desperate at this point. I just want to know if all of this is worth it or not. I'm not sure how much longer it is for. Things have only been getting worse recently and I'm losing my mind. I've never been in a darker place than this before psychologically. Yesterday, during a particularly intense panic attack, where I felt like I would never get out of here and I would never be able to get rid of these pains, I even yelled and told my Mom that I didn't want to do this anymore.
Why is it so much harder to handle the pain now? Because I don't know when it's going to end and whatever end there is is only coming by slowly.
I try to think happy thoughts sometimes, but even a dream about a day when I can go home and just be able to sleep in my own bed until the daylight comes in and feel a desire to wake up seems like the phoniest thought to me. It's just too fake and far.
About three weeks ago, when the Mucositis (which feels like a joke now) started resolving, something just randomly went wrong with with my liver and kidneys, leading them to fail for a short period of time. This created about 20 lbs. of extra fluid and waste to accumulate in my body. The doctors came in and threw around terms like CMV virus and Vino Occlusive Disease (VOD) and at the time I didn't realize just how serious these complications were going to be. My concern in those days was to see my cells start growing, which thankfully they did as they definitely helped in resolving the CMV virus attack on my body. They gave me a lot of medicine to try to get rid of extra fluid in the body, but for some reason there's about 7-10 lbs. worth of swelling in my abdomen that makes it look like I'm carrying triplets right now. It makes me feel like I've eaten 50 times as much as I normally eat and consuming even drops of water is an impossible task. I haven't eaten in 5 weeks now, I don't know how it's possible for a human being to survive without solid food for so long. Whatever liquids I do manage to put into my stomach, come straight out as diarrhea. Having that much extra fluid weight around the belly makes it feel like there's a stress band tied right below my chest, all the way around that's going to explode even when I'm simply just breathing. Forget about trying to find a way to sleep. No matter which side you sleep on, it's so uncomfortable to bear the weight of my own belly that basically what I have to do is lay on my back and keep my legs bent. All of this is creating intense pressure for my back, leading to rely on painkillers to be able to sleep. During the day, I have to walk around to stay mobile and use the restroom etc., but it's absolutely draining to even these things.
This condition alone has messed up my vitals in all sorts of ways. It makes it harder to breathe as everything is pushing up into my chest. My blood pressure and heart rate are out of the roof most of the time. I always gets fevers too, but there's a whole another set of issues that brings with it.
What are the doctors saying? Nothing. They don't know how to fix this. They've seen it before, and yeah it gets better for some people over time. Will it get better for me? We don't know. That's what I meant before I started this by saying once I go in, I have no idea if I'll even come out of this in one piece...it's usually not the transplant itself that kills people, but serious complications like the ones described above that eventually just do not resolve. I don't know how long I'm gonna be in the hospital. I don't know how long I'm gonna be sane. I've started throwing things across the room, because I have multiple panic attacks every day and I know there's literally nothing I can do to control what's happening in my body. I see other patients reaching day 60 and walking out of here and I think to myself how lucky those people are...I compared myself to a homeless person today and wondered who had a more comfortable life at this point. At least the homeless person can still enjoy and taste food and walk around. I would give anything in this world right now to be able to sit down and just drink a cold glass of water and not worry about how the pain from doing that will almost try to kill me within the next hour. Or how my skin is so dry to the bone that no matter what kind of lotion I put on it, I scratch it all night and being low on blood just makes me bleed underneath the skin by doing that .
Everyone I talk to tells me, "you came out of worse before, you're so strong, just hang in there." You know what, what happened last time was basically a miracle. Am I gonna have two miracles in one lifetime? And I am not strong, I am desperate at this point. I just want to know if all of this is worth it or not. I'm not sure how much longer it is for. Things have only been getting worse recently and I'm losing my mind. I've never been in a darker place than this before psychologically. Yesterday, during a particularly intense panic attack, where I felt like I would never get out of here and I would never be able to get rid of these pains, I even yelled and told my Mom that I didn't want to do this anymore.
Why is it so much harder to handle the pain now? Because I don't know when it's going to end and whatever end there is is only coming by slowly.
I try to think happy thoughts sometimes, but even a dream about a day when I can go home and just be able to sleep in my own bed until the daylight comes in and feel a desire to wake up seems like the phoniest thought to me. It's just too fake and far.
Tuesday, January 24, 2012
WTF
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.
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.
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.
Saturday, December 24, 2011
RangiUnit4Life
"Judge your success by what you had to give up in order to get it."
I came across that quote recently and realized there couldn't be a better way to describe what has happened in the last few days here, especially yesterday, January 6th, 2012 aka Transplant Day. They consider that day a second birthday for survivors, so when the infusion of the donor marrow was finished, the nurse said "Happy Birthday!" to me. By that time I was so exhausted, I couldn't even force myself to respond with a thank you and picture a day when I would look back at this time period as a relatively healthy person, because to me that day is eternities away.
Days 3, 4, 5: Radiation
Following days 1 and 2 where I received almost crack-level dose of the chemotherapy drug Cytoxan, I started receiving Total Body Irradiation (TBI, Google it and read the side effects before you read on, it'll make much more sense), twice a day for about an hour each. They would take me down to Radiation Oncology at 7:30am and lay me down on a stretcher in front of the machine that projects the radiation onto the patient from far away. I would lay on my left side for that whole hour, in a room where the temp is to 50 degrees (at least that's what it feels like) and would not be allowed to even more a finger. When the machine is actually on, I would say you mostly feel nothing, although with more and more sessions I could swear I felt the x-rays penetrating every sort of tissue in my body and destroying everything in their way. When I would be finally done around 9:00ish and come back to my room, I had only enough energy to go to the bathroom and then collapse into my bed again. The first day of radiation, I woke up at noon and squeezed in a workout on the treadmill before the afternoon session which started at 2:00pm. That second session was different, because they use lung blocks to try to protect your lungs at least part of the time, but it meant laying motionless on that frigid stretcher for an extra hour so that they get the exact positioning of my lungs in reference to the machine and take x-rays to figure out exactly how big the blocks should be. Those longer sessions were the kind of times you just sit there and wonder exactly what level your body is being destroyed at. I would try to not look directly at the machine in order to try to protect my eyes, but then I realized, no matter what I do I was at the point where I couldn't protect myself from the possibly lethal toxicity of that machine. I knew it was killing me at the cellular level and when you're sitting motionless with nothing to do but wonder about what's being done to you, your mind will tell you to flee. I wondered if it was too late to get out of it, and whether I should just run away from it. I wondered, by signing the consent form for radiation and BMT, had I signed my own death certificate? There was a lot of back and forth between yes and no for radiation for my transplant by the doctors, but they convinced me I needed it and that the benefits outweigh the risks for my case. When I was actually in those rooms getting the life sucked out of me, it took every ounce of mental energy to tell myself to restrain myself onto that stretcher. That's why during those 3 days, all I could do was lay in bed and try to sleep, but the pounding headaches wouldn't even let me do that. Therefore, I shall add these to the list of the great and many Infamous and Unfortunate Days of My Life, the kind where I was driven almost to madness and couldn't help but lose part of my faith in humanity and life.
Day 6: Transplant Day
My Mom and my brother, the donor, came into my room at 9:15am, to see me before the procedure. I told my bro good luck and hoped that he wouldn't be in there for too long. They ended up delaying his surgery for 4 hours, which meant that him and my Mom sat in the waiting room for 4 extra hours, before anything even began and they heard people screaming in the back. From their understanding, they thought they were waiting in the area where all the surgeries are performed on bone marrow donors, so the two of them sat there and thought the same painful stuff that made the other donors scream was about to happen to my brother. Now, my Mom is by far the strongest person I will ever know and she has withstood many, many injustices in her life, but yesterday I saw her so stressed out that she had to to the urgent care herself to see she felt so sick. When they finally called in my bro at 2:00pm to start preparing him for the procedure, my Mom came up to try to rest for a little bit, and I realized how hard it was her for to see not just one, but two of her babies on a hospital bed. There has only been one other time when I have seen my Mother shed a tear during my treatment and that was at the first moment I told her I had leukemia. Since then, until yesterday, she has dealt with everything with a huge heart and immense patience, but I knew it broke her heart yesterday to know how much pain my brother will feel even though he was doing such a great deed. To watch me go through so many painful procedures, and now to see my brother have to do the same broke her down and when I saw that her on her face, I felt more helpless than I have ever in my entire life. Her and I had a discussion at some point yesterday where I realized how similar we are in the way that we think. We were discussing how strenuous the last two years have been for our family and she said, "all I ever wanted was for God to give my children a life easier than mine, but I guess it was foolish to wish that."
Our entire family would wait for another 4 hours before we heard from the doctors about what happened in that Operating Room. By 6:00pm, the 5 of us waiting to hear about my brother were imagining all kinds of pain he must have felt for those hours and what sort of condition he will be in now. We were finally allowed to see him at 6:30 and that's when the nurse told me he was given full anesthesia, even though the plan was to only numb him from the spine down (that's what we were told, hence, all the tension about him feeling the pain during the procedure) meaning that he would be awake for the whole thing. The entire thing was only supposed to take about 1-1.5 hours, but for some reason, it took them longer and they also drew out more marrow than planned, 1.7 liters exactly. That's almost half of the entire marrow content he had. I don't understand why at Johns Hopkins they still do a surgical procedure to draw it out as opposed to giving people growth hormones and then collecting the marrow from just your blood. That would involve a procedure just as simple as a blood donation. Most hospital these days, use peripheral stem cells rather than actual marrow for transplantation.
Anyway, I finally got the big bag of donor cells by 6pm and it took almost 11 hours to infuse the whole thing into me. It wasn't a surgical procedure, they just gave me the marrow through the IV pump going into my catheter, same way that I get chemo. During those 11 hours, I had to be monitored very closely and they took vital signs every hour, meaning I couldn't really sleep. Meanwhile, my brother was in the recovery room until 2am last night and then he was provided a room in the hospital for him to stay at until he was strong enough to be able to walk again. They gave him pretty good pain meds during that time to help with the sudden onset of pain that almost shook him when he started fully waking up from the anesthesia. My parents were finally relieved to know that one of the longest days of their lives was finally over, but we all knew that none of the 6 of us will ever forget stress caused by this entire situation. During the last 2 years of my life that we've been dealing with cancer treatment, never has a single member of my family complained about having to spend so many nights in the hospital with me or being told to run around looking for this and that and being yelled at by nurses and doctors for no good reason. They have felt many of the same emotions that I have during this time and I know that if easier days do come by, the 6 of us will be so happy to be able to just be at home with each other. There are many times where I've wondered what I would do if another person in our family get a life-threatening disease like this that involves repetition of the same stressful times...all I can say is that if that actually happens, I will blow this whole planet up, because that's the kind of anger injustice brings about in me. Believe me, I have that sort of animosity hidden somewhere that I choose to close off and put away and that's why most people who know me can't imagine that sort of a side to my personality. When you mess with the Rangi Unit though, I won't even think twice about bringing it all out.
P.S. My nurse from yesterday suggested this website to me about a BMT - Leukemia survivor who received the transplant here a few years ago:
http://theregoesmyhero.org/
I came across that quote recently and realized there couldn't be a better way to describe what has happened in the last few days here, especially yesterday, January 6th, 2012 aka Transplant Day. They consider that day a second birthday for survivors, so when the infusion of the donor marrow was finished, the nurse said "Happy Birthday!" to me. By that time I was so exhausted, I couldn't even force myself to respond with a thank you and picture a day when I would look back at this time period as a relatively healthy person, because to me that day is eternities away.
Days 3, 4, 5: Radiation
Following days 1 and 2 where I received almost crack-level dose of the chemotherapy drug Cytoxan, I started receiving Total Body Irradiation (TBI, Google it and read the side effects before you read on, it'll make much more sense), twice a day for about an hour each. They would take me down to Radiation Oncology at 7:30am and lay me down on a stretcher in front of the machine that projects the radiation onto the patient from far away. I would lay on my left side for that whole hour, in a room where the temp is to 50 degrees (at least that's what it feels like) and would not be allowed to even more a finger. When the machine is actually on, I would say you mostly feel nothing, although with more and more sessions I could swear I felt the x-rays penetrating every sort of tissue in my body and destroying everything in their way. When I would be finally done around 9:00ish and come back to my room, I had only enough energy to go to the bathroom and then collapse into my bed again. The first day of radiation, I woke up at noon and squeezed in a workout on the treadmill before the afternoon session which started at 2:00pm. That second session was different, because they use lung blocks to try to protect your lungs at least part of the time, but it meant laying motionless on that frigid stretcher for an extra hour so that they get the exact positioning of my lungs in reference to the machine and take x-rays to figure out exactly how big the blocks should be. Those longer sessions were the kind of times you just sit there and wonder exactly what level your body is being destroyed at. I would try to not look directly at the machine in order to try to protect my eyes, but then I realized, no matter what I do I was at the point where I couldn't protect myself from the possibly lethal toxicity of that machine. I knew it was killing me at the cellular level and when you're sitting motionless with nothing to do but wonder about what's being done to you, your mind will tell you to flee. I wondered if it was too late to get out of it, and whether I should just run away from it. I wondered, by signing the consent form for radiation and BMT, had I signed my own death certificate? There was a lot of back and forth between yes and no for radiation for my transplant by the doctors, but they convinced me I needed it and that the benefits outweigh the risks for my case. When I was actually in those rooms getting the life sucked out of me, it took every ounce of mental energy to tell myself to restrain myself onto that stretcher. That's why during those 3 days, all I could do was lay in bed and try to sleep, but the pounding headaches wouldn't even let me do that. Therefore, I shall add these to the list of the great and many Infamous and Unfortunate Days of My Life, the kind where I was driven almost to madness and couldn't help but lose part of my faith in humanity and life.
Day 6: Transplant Day
My Mom and my brother, the donor, came into my room at 9:15am, to see me before the procedure. I told my bro good luck and hoped that he wouldn't be in there for too long. They ended up delaying his surgery for 4 hours, which meant that him and my Mom sat in the waiting room for 4 extra hours, before anything even began and they heard people screaming in the back. From their understanding, they thought they were waiting in the area where all the surgeries are performed on bone marrow donors, so the two of them sat there and thought the same painful stuff that made the other donors scream was about to happen to my brother. Now, my Mom is by far the strongest person I will ever know and she has withstood many, many injustices in her life, but yesterday I saw her so stressed out that she had to to the urgent care herself to see she felt so sick. When they finally called in my bro at 2:00pm to start preparing him for the procedure, my Mom came up to try to rest for a little bit, and I realized how hard it was her for to see not just one, but two of her babies on a hospital bed. There has only been one other time when I have seen my Mother shed a tear during my treatment and that was at the first moment I told her I had leukemia. Since then, until yesterday, she has dealt with everything with a huge heart and immense patience, but I knew it broke her heart yesterday to know how much pain my brother will feel even though he was doing such a great deed. To watch me go through so many painful procedures, and now to see my brother have to do the same broke her down and when I saw that her on her face, I felt more helpless than I have ever in my entire life. Her and I had a discussion at some point yesterday where I realized how similar we are in the way that we think. We were discussing how strenuous the last two years have been for our family and she said, "all I ever wanted was for God to give my children a life easier than mine, but I guess it was foolish to wish that."
Our entire family would wait for another 4 hours before we heard from the doctors about what happened in that Operating Room. By 6:00pm, the 5 of us waiting to hear about my brother were imagining all kinds of pain he must have felt for those hours and what sort of condition he will be in now. We were finally allowed to see him at 6:30 and that's when the nurse told me he was given full anesthesia, even though the plan was to only numb him from the spine down (that's what we were told, hence, all the tension about him feeling the pain during the procedure) meaning that he would be awake for the whole thing. The entire thing was only supposed to take about 1-1.5 hours, but for some reason, it took them longer and they also drew out more marrow than planned, 1.7 liters exactly. That's almost half of the entire marrow content he had. I don't understand why at Johns Hopkins they still do a surgical procedure to draw it out as opposed to giving people growth hormones and then collecting the marrow from just your blood. That would involve a procedure just as simple as a blood donation. Most hospital these days, use peripheral stem cells rather than actual marrow for transplantation.
Anyway, I finally got the big bag of donor cells by 6pm and it took almost 11 hours to infuse the whole thing into me. It wasn't a surgical procedure, they just gave me the marrow through the IV pump going into my catheter, same way that I get chemo. During those 11 hours, I had to be monitored very closely and they took vital signs every hour, meaning I couldn't really sleep. Meanwhile, my brother was in the recovery room until 2am last night and then he was provided a room in the hospital for him to stay at until he was strong enough to be able to walk again. They gave him pretty good pain meds during that time to help with the sudden onset of pain that almost shook him when he started fully waking up from the anesthesia. My parents were finally relieved to know that one of the longest days of their lives was finally over, but we all knew that none of the 6 of us will ever forget stress caused by this entire situation. During the last 2 years of my life that we've been dealing with cancer treatment, never has a single member of my family complained about having to spend so many nights in the hospital with me or being told to run around looking for this and that and being yelled at by nurses and doctors for no good reason. They have felt many of the same emotions that I have during this time and I know that if easier days do come by, the 6 of us will be so happy to be able to just be at home with each other. There are many times where I've wondered what I would do if another person in our family get a life-threatening disease like this that involves repetition of the same stressful times...all I can say is that if that actually happens, I will blow this whole planet up, because that's the kind of anger injustice brings about in me. Believe me, I have that sort of animosity hidden somewhere that I choose to close off and put away and that's why most people who know me can't imagine that sort of a side to my personality. When you mess with the Rangi Unit though, I won't even think twice about bringing it all out.
THE KEY TO MY LIFE....
P.S. My nurse from yesterday suggested this website to me about a BMT - Leukemia survivor who received the transplant here a few years ago:
http://theregoesmyhero.org/
Beg/End
I always wish I wrote more, but the last few days have justifiably been more about trying to live it up as much as possible rather than sitting down and sorting out the commotion in my head. Starting the transplant on the 1st of January, a few people have congratulated me on taking this step with the new year, but I actually feel nothing special about. The main reason why is that I still have no idea how it's all going to turn out in the next few weeks...within this small time frame, I will know whether the process was successful or not. Whether I'll get out of here in one piece or not.
What has the anticipation felt like? Actually there wasn't much time for anticipation...the last two weeks at home were just so hectic, because I made it a point to meet up with everyone and see them before I left. I suppose I was planning on covering all my bases: what if this is the time last time I get to see these people; what if this is the last time I'm in my house with my family, etc. Why did I have these thoughts? The conversations with my oncologist and the radiation oncologist were all about these what if's. The only answer I ever got was, "we can't predict the outcome, it's a risk you have to take, it's your best bet for a cure at this point." Even going back and forth between the radiation doctor and the BMT oncologist, there was disagreement as to whether we should do radiation based transplant or chemo only transplant. During this time, I had to decide whether I want to do total body radiation or not. The dilemma was, yes, radiation guarantees a lower relapse rate after transplant, but it also makes you more sick during the transplant and has worse long term side effects, such as another cancer. Basically, I had to pick my own poison. Either I risk the leukemia coming back and killing me even after the transplant if I don't do radiation or I risk another type of cancer springing up at some random point if I do do it and make it through. I had a month to answer this question and the back and forth between the two options was enough to make me want to quit altogether. It's cruel that I have the power to choose my own poison. I have to be the one to decide whether I want the leukemia to come back and kill me or another tumor later down the line. As a cancer patient, your life starts to deteriorate step by step and start losing options, such as planning out your future, whether you'll have kids, etc. Even though people tell you things (mostly to make themselves feel better) like "you'll get through it and it'll just be a thing of the past soon," you can't imagine being able to live the same way again (pre-diagnosis); there are some lucky cancer patients who don't relapse, but for the majority that do, there is no going back to the same way of life that you once lived. You always carry around this burden on your shoulders - the fear that even though currently I'm cancer-free, I can't plan the rest of my life, because that in itself will be like jinxing myself. I'm at the point where I have to make the best out of whatever I have left my in my body, mind and maybe soul...but every time they perform unbearably painful procedures, a little of that dies also and I shed less tears with repetitions.
I just finished the movie 50/50 (google it) and it wasn't actually as corny as I thought it would be. There were a lot of issues it addressed ranging from how a young adult feels hearing the words "you have cancer" to going in for a highly complicated procedure such as a surgery or transplant. Even little things like how it feels to shave off your head or when you meet someone new were discussed, which I thought was handled pretty well. I'd recommend it.
Day 1: 1/1/12
Started chemo - cytoxan (cyclophosphamide), high dose, along with IV steroids and the basic hydration stuff (saline). They also gave me IV Ativan (anti-anxiety and makes you very sleepy) as well as Fennergen (reduces nausea and makes u pass out) along with the chemo. Both of these made me so groggy that I was knocked out by 10pm, which hasn't happened in months.
Everyone in this unit is doing bone marrow transplants. I was walking around outside in the hallway and went past this lady's room who seemed very, very ill. There was a team of doctors, nurses and other staff just surrounding her. There was also a police officer right outside her room and I couldn't help but wonder that was just in case she doesn't make it. A couple laps later, I couldn't even walk by her room, because so many people had gathered around and I was left to wonder whether the worst had actually happened.
Posted above is the schedule for my stay here. Days 1-5 are negative, because they're before I actually get the transplant and the days after that are positive.CY - stands for Cytoxan (chemo drug) and TBI stands for total body irradiation which starts on day 3. The actual transplant is on the 6th day, when I get the donor cells from my brother. That's also the same day that he gets the surgery done in the morning. Then I have the weekend off and the following week, I get two more doses of chemo and that's it. After that we sit and wait for my blood counts to drop to zero, ideally wiping out every cell I have my bone marrow and come back up, which will mean that the new marrow from my brother is engrafting and producing healthy blood cells. The time period between now and when my blood counts start to increase is basically the danger zone, meaning if I catch anything during that or if something from my own body attacks me, I have little to no chance of withstanding it.
Expect daily posts as now I have no life beyond this room. Also, I'm gonna be totally wiped out when I start radiation, so this will be the best way to keep everyone in the loop so that they don't freak out if I don't answer my phone.
What has the anticipation felt like? Actually there wasn't much time for anticipation...the last two weeks at home were just so hectic, because I made it a point to meet up with everyone and see them before I left. I suppose I was planning on covering all my bases: what if this is the time last time I get to see these people; what if this is the last time I'm in my house with my family, etc. Why did I have these thoughts? The conversations with my oncologist and the radiation oncologist were all about these what if's. The only answer I ever got was, "we can't predict the outcome, it's a risk you have to take, it's your best bet for a cure at this point." Even going back and forth between the radiation doctor and the BMT oncologist, there was disagreement as to whether we should do radiation based transplant or chemo only transplant. During this time, I had to decide whether I want to do total body radiation or not. The dilemma was, yes, radiation guarantees a lower relapse rate after transplant, but it also makes you more sick during the transplant and has worse long term side effects, such as another cancer. Basically, I had to pick my own poison. Either I risk the leukemia coming back and killing me even after the transplant if I don't do radiation or I risk another type of cancer springing up at some random point if I do do it and make it through. I had a month to answer this question and the back and forth between the two options was enough to make me want to quit altogether. It's cruel that I have the power to choose my own poison. I have to be the one to decide whether I want the leukemia to come back and kill me or another tumor later down the line. As a cancer patient, your life starts to deteriorate step by step and start losing options, such as planning out your future, whether you'll have kids, etc. Even though people tell you things (mostly to make themselves feel better) like "you'll get through it and it'll just be a thing of the past soon," you can't imagine being able to live the same way again (pre-diagnosis); there are some lucky cancer patients who don't relapse, but for the majority that do, there is no going back to the same way of life that you once lived. You always carry around this burden on your shoulders - the fear that even though currently I'm cancer-free, I can't plan the rest of my life, because that in itself will be like jinxing myself. I'm at the point where I have to make the best out of whatever I have left my in my body, mind and maybe soul...but every time they perform unbearably painful procedures, a little of that dies also and I shed less tears with repetitions.
I just finished the movie 50/50 (google it) and it wasn't actually as corny as I thought it would be. There were a lot of issues it addressed ranging from how a young adult feels hearing the words "you have cancer" to going in for a highly complicated procedure such as a surgery or transplant. Even little things like how it feels to shave off your head or when you meet someone new were discussed, which I thought was handled pretty well. I'd recommend it.
Day 1: 1/1/12
Started chemo - cytoxan (cyclophosphamide), high dose, along with IV steroids and the basic hydration stuff (saline). They also gave me IV Ativan (anti-anxiety and makes you very sleepy) as well as Fennergen (reduces nausea and makes u pass out) along with the chemo. Both of these made me so groggy that I was knocked out by 10pm, which hasn't happened in months.
Everyone in this unit is doing bone marrow transplants. I was walking around outside in the hallway and went past this lady's room who seemed very, very ill. There was a team of doctors, nurses and other staff just surrounding her. There was also a police officer right outside her room and I couldn't help but wonder that was just in case she doesn't make it. A couple laps later, I couldn't even walk by her room, because so many people had gathered around and I was left to wonder whether the worst had actually happened.
Posted above is the schedule for my stay here. Days 1-5 are negative, because they're before I actually get the transplant and the days after that are positive.CY - stands for Cytoxan (chemo drug) and TBI stands for total body irradiation which starts on day 3. The actual transplant is on the 6th day, when I get the donor cells from my brother. That's also the same day that he gets the surgery done in the morning. Then I have the weekend off and the following week, I get two more doses of chemo and that's it. After that we sit and wait for my blood counts to drop to zero, ideally wiping out every cell I have my bone marrow and come back up, which will mean that the new marrow from my brother is engrafting and producing healthy blood cells. The time period between now and when my blood counts start to increase is basically the danger zone, meaning if I catch anything during that or if something from my own body attacks me, I have little to no chance of withstanding it.
Expect daily posts as now I have no life beyond this room. Also, I'm gonna be totally wiped out when I start radiation, so this will be the best way to keep everyone in the loop so that they don't freak out if I don't answer my phone.
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