I go through 2 week cycles for blood counts fluctuations. Every other week I'm low and they give me transfusions for platelets and red blood cells, and a shot of neupogen for white blood cells. The reason why even though the transplant itself was successful, my body is still not producing its own blood. Graft vs. host disease is the reason why the bone marrow has not fully been populated; my body is still fighting the cells my brother has given me. The medication I'm on is supposed to help get rid of this disease and allow the donor's marrow to fully graft in my bones and start making a normal amount of red, white, and platelet cells. Also, the CMV virus requires me to take a very strong antibiotic, so my white blood cells die fighting that and I become neutropenic. I can't even tell you how many times I've been neutropenic in the last 2.5 years.
Having no ability to fight an infection or anything that enters my body, does that scare me anymore? It didn't at first. Everything that has happened since the sepsis in April 2010 though, I'm not sure anymore. I'm much more aware of people around me and how sterile their habits are. This is what I mean when I tell you that I can't see people because I have low blood counts. If we're gonna talk about fear, we might as well address the biggest cause of fear for someone like me. What's the real difference between my daily thinking and that of someone not going through cancer treatment? Mostly I'm ignorant of it. I did feel it on the initial diagnosis day and then on the relapse day, but each time I was told there were treatment options. That doesn't kill the fear, especially the second time if your initial round was rough, but at least you haven't reached the end of the rope.
Anyway, tomorrow will be one whole month since I got out of the hospital after the fall episode with seizures. I've been going to the doctors 2-3 times a week so they can assess whether I'm improving and my complications are resolving or not. Overall, I'm physically stronger and mentally more stable, but there are definitely days where I can't stay awake. I am able to recognize this and tell myself to stop though. In a month's time, I've come a long way. July 6th will mark the 6 month point since the beginning of my transplant and hopefully a lot of the medicines will be stopped. Right now my schedule is totally dependent on what time I have to take the meds...it also affects my appetite. I was on such strong steroids that I ate 5-6 large meals a day. I'm down to 4 meals now and heading towards my old diet habits where I'm not gaining so much weight at such a fast pace. The next step is to gain muscle, which so far has been very slow. It's extremely difficult to put on muscle weight if you're not really mobile. For now, I need to just strengthen my joints; they're the weakest.
I don't know if it's comforting or a disadvantage to know that I've done all this before two years ago. My body has taken this toll before, so this is toll #2. Psychologically, I know I'm capable of doing it again, and doing it better this time. There's a little bit of both, but hopefully I can do it faster this time. All days are pretty much the same for me, not to say unproductive as I'm taking care of everything at home that I did before, but psychologically I have a long distance to go. I am just getting out of the delirium and realizing that the last 5 months are going to be another dent in my life. The car is still going to run smoothly, soon. The big parts are all intact. If I were you, I'd ride along.
Saturday, May 19, 2012
Sunday, May 13, 2012
Mother's Day
I probably can't even do this post justice right now...but today has been amazing. I don't think we have ever been this nice to my Mom before all in one day. It makes sense given the recent events, but I think my Mom is weirded out. I wouldn't blame her. We were definitely not close as a family in the years prior to this and a day like today is exactly what we needed to ease the stress. Probably getting tons of food tonight from an Indian restaurant and stuffing ourselves with shahi paneer. Mom wants jalebi...jalebi and milk is such a good combo. Also, we got some chocolate covered strawberries thanks to the Parmars, so yeah I'll probably have to tie my hands and not crush all the food and dessert.
 |
| June 2008 |
HAPPY MOTHERS DAY to all the mommy's of the world =)
Sunday, May 6, 2012
Round 3. ICU vs. GP.
Breathe in, breathe out - step 1 for every day.
Hello people, this post is going to be very complicated, but you'll learn a lot, especially if you're going into the medical field. I might even have to break it down into two if it's too long and try not to go into excruciating details. No promises though.
A general timeline of the damage done to my body will help explain the condition I'm in now. Jan 1- 10 was all chemo and full body radiation and getting the donor's blood. That's the foundation of the damage that was/is to come for the next few months. Side effects of that for next 2-3 weeks were all things we were expecting: Mucositis (mouth cell destruction - no ability to eat or swallow), losing weight and appetite, fatigue, destruction of all cells in your body or complete loss of what's inside your bones. I've experienced this with just chemo cycles before as you all know, but I've never done it in combination with radiation until the transplant. It's no joke when they say it's lethal.
When that started healing and I started eating a little bit, I got VOD (vino occlusive disease) one day. That's when your kidneys and liver shut down at the same time, so you can't process food or liquids and everything that's been in your stomach for that day is unprocessed and whatever liquids are going in, stay in until the kidneys start to function again. VOD claims a lot of BMT patients lives in the second month (statistics and Google are not my friends). I just remember my stomach being so big from the unprocessed food that I thought I was about to give birth to twins any day. Also, I only drank liquids for those weeks as the feeling of fullness never went away. The kidneys started healing first, and then the liver, which is very slow. Also at this time, I had the CMV virus which mimics the same symptoms. The doctors there couldn't decide which one was causing what symptoms and for a while, I was told I may not even have VOD, just CMV. I took medication for both of course and the pain from the liver damage and my back was so intense that I had to take pain killers. Up until that point, they were useless to me, but there was a night when it was an emergency situation and the nightly pain attacks had me screaming and throwing things across the room. When you do that as a BMT patient, you can get any drug you want in the world as the nurse runs in. If you call nicely, they don't consider it that important to get to you.
That took me into March of this year and I got out of that mess. They did a bone marrow biopsy (don't worry, I'm gonna explain that procedure in detail one day, it's like having a thin, hollow pen corkscrewed into your lower back to extract bone marrow) and it was completely negative and leukemia free, so the next step was to get discharged from Hopkins and come back to my old hospital and oncologists at home. I was weak, but not to the point where lots of food and moving around wouldn't bring me back up in a few weeks. We used to get days off and come home and on those days, I felt improvement in everything. Things were going according to plan. Right about then, I started feeling this itchiness on my skin and real dryness in my mouth. I was losing sensation of taste in my mouth and every day things would taste worse and worse, more and more dry. I was pretty much shoving things down my throat. My liver started getting worse too and there was a good amount of stomach problems. One day, we were coming home in a somewhat tinted car, but sunlight came in for a few minutes when I was sleeping and burnt my face and eyes a little bit. What's all of this? Graft vs. Host Disease - what I was afraid of most. We went back to Hopkins the next day and for a couple weeks, they waited and didn't do anything. I was up all night itching like an animal, but apparently there wasn't enough proof that this is it and they didn't start medicine to treat it for a while. That was probably good for me as whatever medicine they were about to give me would almost ruin me forever.
Once the GVHD was officially diagnosed with a skin biopsy, we started a whole bunch of very strong medicine. IV drugs for 4-8 hours every day at the hospital. I somehow also contracted fungal pneumonia at the same time and that pill also causes dry skin and mouth, blurred vision, hallucinations, lack of appetite, etc. The CMV virus on top of these was also active, so the antibiotic pill for that was pretty intense and made my blood cell count drop. We know that puts me at risk for more infections by making my immune system weaker, especially when I'm in a hospital. The combined damage from 16 pills in the morning and 10 pills at night I took every day at the time turned me into a crazy person. I was given a much higher dose of the GVHD meds and some of the other meds and they weren't adjusted in time. I would shake so much, as in tremors in the hands and feet that I felt like any time now, some nerve was gonna burst. I tried to describe this to the doctors and they said it's normal, but failed to notice the psychological changes that were coming about. Everyone I talked to could tell I was different and didn't know how to keep going. The doctors there checked the levels of the meds, but it was pretty much too late. They couldn't find the right amount of the drugs to give me, so I suffered either way. I told them literally from my own mouth that this didn't feel right and I shouldn't be feeling that weak to the point where I can't walk any more. Eating was impossible. Every one of those drugs dries out your mouth; I have had no saliva of my own, even to this day, but I had to eat as the steroids were so strong. I had to keep my stomach full at all times or else I was a goner. I ate 6 meals a day. I'm down to 4-5 now, but I don't eat like I've been starving for years as I was doing then. It's amazing that with all that food, I still lost 10 lbs. and went under 100 for the first time since this started.
I asked the Nurse Practitioner if I could go back to my oncologist in Fairfax now. She said stay one more week with them and then I could transfer and gave me that weekend before off. It was right after my bday week, the week of April 15th, which were supposed to be the last appointments with them. April 16th was the official 100 days since my transplant and as a rule of thumb, that's when a lot of issues start resolving for BMT patients. Up until April 15th, I was being mentally and physically destroyed at a fast pace and I knew it. On top of that, the doctors said, you just need to keep pushing harder and make your body fight. I did that and told myself, one more week and then you're back home and everything will be fixed. The morning of Sunday the 15th, I got up and went to the bathroom by myself at home during that weekend off. My Mom has given me clear instructions to never do that. It's one of the only times I've done it, but this was the first time I fell. How? I don't know. My sister said they heard a loud noise upstairs and my slippers were taken off in front of the sink. I remember getting out of bed and walking into the bathroom to pee and then nothing. The injuries were internal: on my back and head. We don't know if I fell first and that led to the big bruise on my back and swelling in my head. If I fell first and had internal bleeding and that caused the seizures that started, then that means the medicine was responsible for the weakness and that's at fault. If I started having seizures first and lost consciousness as a result of that and then fell and had injuries that caused bodily damage from the fall, then I guess the medicine caused brain damage even before the fall. Basically the question is, we know I was weak, but without the fall, would I have gone to the ER and ICU? Either way, whatever I got at Hopkins is responsible for me being in that gentle condition plus my stupid idea to get up and go to the bathroom by myself. I had no bowel control at the time, so I didn't want to wait for someone to come all the way upstairs and risk peeing in the bed. That's how bad my liver was and how weak my body was.
I was unconscious and had multiple seizures that day and woke up a few days later at the ICU in INOVA Fairfax, once again, not knowing what happened to me in the last 3-4 days. I was definitely not in my senses. This time my family was really scared, because the last time I was in the ICU, it took me 1.5 months to get out of the hospital. I slowly woke up this time and said the weirdest things and thought everybody was thinking I'm crazy, so I have to prove otherwise. I apparently laughed a lot, but tried to seem normal, so that they would let me out of there and I wouldn't have more seizures from the shock and stress of being back in the hospital. On top of that, I just didn't have control over parts of my brain back yet, so a lot of times it really was me going crazy. They couldn't tell the difference, only I knew the difference. My family spent every minute with me though as it was so unpredictable when I would ask for a specific person and if they weren't there, there was no knowing what I would do. When I'm unconscious, I feel no pain, I don't remember anything. For them, the memories must be scarring, because I wake up acting crazy too and they never know if that's fully reversible or not. Only time tells.
Next few days, my medications were changed to safer ones for the same problems by the doctors here at Fairfax and that has made all the difference. My brain is healing, I'm actually on a seizure med now that's pretty strict with timing and avoiding stress. That's how you reverse previous brain damage - relaxation. If I start to seem like I'm losing control again, everyone at home has to take it down a notch and let me rest and eat. Whatever I need at the time. The most important factor though is sleeping well. If there's not a certain amount of rest, then I can't function the next day. I have to go the doctors now a few times a week and I still haven't fully gotten those diseases out of my body - still have GVHD, which I think is going away now as most of its signs are improving, and CMV is apparently still active. Fungal pneumonia is gone with the drug I'm on it for, but I still have to take that for the next two months on a prophylaxis basis. Basically, I have to take drugs for these problems for the next 2 months and then they can reassess what I need from there.
I'm getting the energy back to be able to walk, but it's hard to make people around you believe that in just 3 weeks that's possible. They supervise my every movement. I'm not allowed to walk 10 feet without holding onto something and having someone watch me. I think I'm past that point, I just need something or someone close by in case I trip and I can sit most of the day now and think rationally. I still do get angry very fast and emotional very easily, but there's more and more control each day as I realize what's happening. My memory is improving and the energy level is incomparable to even a few days ago. I eat 4 protein rich meals a day and the level of activity leaves me sore and resulting in strength gain. How do I know? I've done this before from a much lower point - wheelchair - I remember what it feels like to rebuild from scratch and how much time your body needs. I'm giving it enough time; I just have to give the same to my head and wait to get off the toxicity I'm putting into it. That's why when I was discharged, the doctor said, you need to relax instead of trying to jump back into the routine things you would do at home as that will heal you the fastest and reduce the risk of you catching anything else new. I've lived by these words the last two weeks and the results are amazing. This is why I had to be MIA, but it was still good to see texts/emails and get calls from everyone even in my delirious state. Basically, this time I lost my normal process of thinking and was hypersensitive about what's going on in my head, so hearing from people or remembering good times from the past was one of the best ways to relax. That's motivation to make a grand return as I always do.
P.S. I just realized my post titled "we aint done yet" predicts a seizure from the new meds at the time...
Hello people, this post is going to be very complicated, but you'll learn a lot, especially if you're going into the medical field. I might even have to break it down into two if it's too long and try not to go into excruciating details. No promises though.
A general timeline of the damage done to my body will help explain the condition I'm in now. Jan 1- 10 was all chemo and full body radiation and getting the donor's blood. That's the foundation of the damage that was/is to come for the next few months. Side effects of that for next 2-3 weeks were all things we were expecting: Mucositis (mouth cell destruction - no ability to eat or swallow), losing weight and appetite, fatigue, destruction of all cells in your body or complete loss of what's inside your bones. I've experienced this with just chemo cycles before as you all know, but I've never done it in combination with radiation until the transplant. It's no joke when they say it's lethal.
When that started healing and I started eating a little bit, I got VOD (vino occlusive disease) one day. That's when your kidneys and liver shut down at the same time, so you can't process food or liquids and everything that's been in your stomach for that day is unprocessed and whatever liquids are going in, stay in until the kidneys start to function again. VOD claims a lot of BMT patients lives in the second month (statistics and Google are not my friends). I just remember my stomach being so big from the unprocessed food that I thought I was about to give birth to twins any day. Also, I only drank liquids for those weeks as the feeling of fullness never went away. The kidneys started healing first, and then the liver, which is very slow. Also at this time, I had the CMV virus which mimics the same symptoms. The doctors there couldn't decide which one was causing what symptoms and for a while, I was told I may not even have VOD, just CMV. I took medication for both of course and the pain from the liver damage and my back was so intense that I had to take pain killers. Up until that point, they were useless to me, but there was a night when it was an emergency situation and the nightly pain attacks had me screaming and throwing things across the room. When you do that as a BMT patient, you can get any drug you want in the world as the nurse runs in. If you call nicely, they don't consider it that important to get to you.
That took me into March of this year and I got out of that mess. They did a bone marrow biopsy (don't worry, I'm gonna explain that procedure in detail one day, it's like having a thin, hollow pen corkscrewed into your lower back to extract bone marrow) and it was completely negative and leukemia free, so the next step was to get discharged from Hopkins and come back to my old hospital and oncologists at home. I was weak, but not to the point where lots of food and moving around wouldn't bring me back up in a few weeks. We used to get days off and come home and on those days, I felt improvement in everything. Things were going according to plan. Right about then, I started feeling this itchiness on my skin and real dryness in my mouth. I was losing sensation of taste in my mouth and every day things would taste worse and worse, more and more dry. I was pretty much shoving things down my throat. My liver started getting worse too and there was a good amount of stomach problems. One day, we were coming home in a somewhat tinted car, but sunlight came in for a few minutes when I was sleeping and burnt my face and eyes a little bit. What's all of this? Graft vs. Host Disease - what I was afraid of most. We went back to Hopkins the next day and for a couple weeks, they waited and didn't do anything. I was up all night itching like an animal, but apparently there wasn't enough proof that this is it and they didn't start medicine to treat it for a while. That was probably good for me as whatever medicine they were about to give me would almost ruin me forever.
Once the GVHD was officially diagnosed with a skin biopsy, we started a whole bunch of very strong medicine. IV drugs for 4-8 hours every day at the hospital. I somehow also contracted fungal pneumonia at the same time and that pill also causes dry skin and mouth, blurred vision, hallucinations, lack of appetite, etc. The CMV virus on top of these was also active, so the antibiotic pill for that was pretty intense and made my blood cell count drop. We know that puts me at risk for more infections by making my immune system weaker, especially when I'm in a hospital. The combined damage from 16 pills in the morning and 10 pills at night I took every day at the time turned me into a crazy person. I was given a much higher dose of the GVHD meds and some of the other meds and they weren't adjusted in time. I would shake so much, as in tremors in the hands and feet that I felt like any time now, some nerve was gonna burst. I tried to describe this to the doctors and they said it's normal, but failed to notice the psychological changes that were coming about. Everyone I talked to could tell I was different and didn't know how to keep going. The doctors there checked the levels of the meds, but it was pretty much too late. They couldn't find the right amount of the drugs to give me, so I suffered either way. I told them literally from my own mouth that this didn't feel right and I shouldn't be feeling that weak to the point where I can't walk any more. Eating was impossible. Every one of those drugs dries out your mouth; I have had no saliva of my own, even to this day, but I had to eat as the steroids were so strong. I had to keep my stomach full at all times or else I was a goner. I ate 6 meals a day. I'm down to 4-5 now, but I don't eat like I've been starving for years as I was doing then. It's amazing that with all that food, I still lost 10 lbs. and went under 100 for the first time since this started.
I asked the Nurse Practitioner if I could go back to my oncologist in Fairfax now. She said stay one more week with them and then I could transfer and gave me that weekend before off. It was right after my bday week, the week of April 15th, which were supposed to be the last appointments with them. April 16th was the official 100 days since my transplant and as a rule of thumb, that's when a lot of issues start resolving for BMT patients. Up until April 15th, I was being mentally and physically destroyed at a fast pace and I knew it. On top of that, the doctors said, you just need to keep pushing harder and make your body fight. I did that and told myself, one more week and then you're back home and everything will be fixed. The morning of Sunday the 15th, I got up and went to the bathroom by myself at home during that weekend off. My Mom has given me clear instructions to never do that. It's one of the only times I've done it, but this was the first time I fell. How? I don't know. My sister said they heard a loud noise upstairs and my slippers were taken off in front of the sink. I remember getting out of bed and walking into the bathroom to pee and then nothing. The injuries were internal: on my back and head. We don't know if I fell first and that led to the big bruise on my back and swelling in my head. If I fell first and had internal bleeding and that caused the seizures that started, then that means the medicine was responsible for the weakness and that's at fault. If I started having seizures first and lost consciousness as a result of that and then fell and had injuries that caused bodily damage from the fall, then I guess the medicine caused brain damage even before the fall. Basically the question is, we know I was weak, but without the fall, would I have gone to the ER and ICU? Either way, whatever I got at Hopkins is responsible for me being in that gentle condition plus my stupid idea to get up and go to the bathroom by myself. I had no bowel control at the time, so I didn't want to wait for someone to come all the way upstairs and risk peeing in the bed. That's how bad my liver was and how weak my body was.
I was unconscious and had multiple seizures that day and woke up a few days later at the ICU in INOVA Fairfax, once again, not knowing what happened to me in the last 3-4 days. I was definitely not in my senses. This time my family was really scared, because the last time I was in the ICU, it took me 1.5 months to get out of the hospital. I slowly woke up this time and said the weirdest things and thought everybody was thinking I'm crazy, so I have to prove otherwise. I apparently laughed a lot, but tried to seem normal, so that they would let me out of there and I wouldn't have more seizures from the shock and stress of being back in the hospital. On top of that, I just didn't have control over parts of my brain back yet, so a lot of times it really was me going crazy. They couldn't tell the difference, only I knew the difference. My family spent every minute with me though as it was so unpredictable when I would ask for a specific person and if they weren't there, there was no knowing what I would do. When I'm unconscious, I feel no pain, I don't remember anything. For them, the memories must be scarring, because I wake up acting crazy too and they never know if that's fully reversible or not. Only time tells.
Next few days, my medications were changed to safer ones for the same problems by the doctors here at Fairfax and that has made all the difference. My brain is healing, I'm actually on a seizure med now that's pretty strict with timing and avoiding stress. That's how you reverse previous brain damage - relaxation. If I start to seem like I'm losing control again, everyone at home has to take it down a notch and let me rest and eat. Whatever I need at the time. The most important factor though is sleeping well. If there's not a certain amount of rest, then I can't function the next day. I have to go the doctors now a few times a week and I still haven't fully gotten those diseases out of my body - still have GVHD, which I think is going away now as most of its signs are improving, and CMV is apparently still active. Fungal pneumonia is gone with the drug I'm on it for, but I still have to take that for the next two months on a prophylaxis basis. Basically, I have to take drugs for these problems for the next 2 months and then they can reassess what I need from there.
I'm getting the energy back to be able to walk, but it's hard to make people around you believe that in just 3 weeks that's possible. They supervise my every movement. I'm not allowed to walk 10 feet without holding onto something and having someone watch me. I think I'm past that point, I just need something or someone close by in case I trip and I can sit most of the day now and think rationally. I still do get angry very fast and emotional very easily, but there's more and more control each day as I realize what's happening. My memory is improving and the energy level is incomparable to even a few days ago. I eat 4 protein rich meals a day and the level of activity leaves me sore and resulting in strength gain. How do I know? I've done this before from a much lower point - wheelchair - I remember what it feels like to rebuild from scratch and how much time your body needs. I'm giving it enough time; I just have to give the same to my head and wait to get off the toxicity I'm putting into it. That's why when I was discharged, the doctor said, you need to relax instead of trying to jump back into the routine things you would do at home as that will heal you the fastest and reduce the risk of you catching anything else new. I've lived by these words the last two weeks and the results are amazing. This is why I had to be MIA, but it was still good to see texts/emails and get calls from everyone even in my delirious state. Basically, this time I lost my normal process of thinking and was hypersensitive about what's going on in my head, so hearing from people or remembering good times from the past was one of the best ways to relax. That's motivation to make a grand return as I always do.
P.S. I just realized my post titled "we aint done yet" predicts a seizure from the new meds at the time...
Friday, April 27, 2012
Guys Hang On
Hello Everyone,
I just want to make sure everyone knows that I'm not ignoring your texts/calls, I'll get back to you soon. I was prescribed rest for my body and most importantly brain, so that's what I'm doing and the results are amazing. I need a couple more weeks and I'll be walking on my own and that will make the biggest difference in how things are and I'll explain everything to you. Don't worry, things are getting better :)
Love,
GP
I just want to make sure everyone knows that I'm not ignoring your texts/calls, I'll get back to you soon. I was prescribed rest for my body and most importantly brain, so that's what I'm doing and the results are amazing. I need a couple more weeks and I'll be walking on my own and that will make the biggest difference in how things are and I'll explain everything to you. Don't worry, things are getting better :)
Love,
GP
Wednesday, March 28, 2012
We Ain't Done Yet
"Last night I had a dream, When I got to Africa,
I had one hell of a rumble.
I had to beat Tarzan’s behind first,
For claiming to be King of the Jungle.
For this fight, I’ve wrestled with alligators,
I’ve tussled with a whale.
I done handcuffed lightning
And throw thunder in jail.
You know I’m bad.
just last week, I murdered a rock,
Injured a stone, Hospitalized a brick.
I’m so mean, I make medicine sick.
I’m so fast, man,
I can run through a hurricane and don't get wet.
When George Foreman meets me,
He’ll pay his debt.
I can drown the drink of water, and kill a dead tree.
Wait till you see Muhammad Ali"
I came across that quote today and couldn't describe the attitude I need to have right now better than that. The last 3 weeks have been pure hell, with the last few days being especially excruciating. I have fungal pneumonia, some bacterial infection and now severe Graft Vs. Host Disease (GVHD). The pneumonia has been producing a nasty cough pretty much all day and night, pushing up phlegm into my already cut and torn up mouth. I'm basically not producing any saliva of my own, because the medicines I'm on that completely dry you out and the re's GVHD in my mouth. Sometimes it hurts to even drink water with all the cuts and ulcers in my mouth, let alone eat. Whatever I do eat, I throw up because of the cough. I weigh only 100 lbs. and can no longer walk more than about 200 feet. My Mom takes me to and from the hospital in a wheelchair - 3 weeks ago I could easily walk to and from.
Most of my day is spent in the hospital, because I'm on some serious IV medications and a ton of pills. A lot of them are to be taken at different times of the day so it's mentally exhausting having to keep track of all the times, because my appointment times vary so that throws off my whole schedule. Some have to be taken on an empty stomach, some with food...it's just so very complicated. This is what you have to do when you have 3 problems going on at once. I think the pneumonia should be getting better soon though with the intense medicine they put me on. The first day I took it, I turned off the lights to go to bed and saw this dim light flashing constantly. I thought I was gonna have a seizure and felt so dizzy. It also causes mild hallucinations every night, which is pretty interesting. Thankfully the flashing lights are not that apparent, but the dizziness still continues. My vision is getting so blurry, I have to wear glasses everywhere.
This degree of gvhd doesnt happen to most people...it was not supposed to happen to me with such a great match...only about 30% of people get gvhd at all. I'm on two strong steroids and this pro-graft medicine that's expected to stop this and turn things around, but it's taking a while...my liver was finally healing from the previous complications, but it got about 7-8 times worse in the last couple weeks. I still can't taste ANYTHING, I could be eating grass and I wouldn't know the difference. I basically force myself to shove food down my throat, because the steroids make me so hungry.
I had one hell of a rumble.
I had to beat Tarzan’s behind first,
For claiming to be King of the Jungle.
For this fight, I’ve wrestled with alligators,
I’ve tussled with a whale.
I done handcuffed lightning
And throw thunder in jail.
You know I’m bad.
just last week, I murdered a rock,
Injured a stone, Hospitalized a brick.
I’m so mean, I make medicine sick.
I’m so fast, man,
I can run through a hurricane and don't get wet.
When George Foreman meets me,
He’ll pay his debt.
I can drown the drink of water, and kill a dead tree.
Wait till you see Muhammad Ali"
I came across that quote today and couldn't describe the attitude I need to have right now better than that. The last 3 weeks have been pure hell, with the last few days being especially excruciating. I have fungal pneumonia, some bacterial infection and now severe Graft Vs. Host Disease (GVHD). The pneumonia has been producing a nasty cough pretty much all day and night, pushing up phlegm into my already cut and torn up mouth. I'm basically not producing any saliva of my own, because the medicines I'm on that completely dry you out and the re's GVHD in my mouth. Sometimes it hurts to even drink water with all the cuts and ulcers in my mouth, let alone eat. Whatever I do eat, I throw up because of the cough. I weigh only 100 lbs. and can no longer walk more than about 200 feet. My Mom takes me to and from the hospital in a wheelchair - 3 weeks ago I could easily walk to and from.
Most of my day is spent in the hospital, because I'm on some serious IV medications and a ton of pills. A lot of them are to be taken at different times of the day so it's mentally exhausting having to keep track of all the times, because my appointment times vary so that throws off my whole schedule. Some have to be taken on an empty stomach, some with food...it's just so very complicated. This is what you have to do when you have 3 problems going on at once. I think the pneumonia should be getting better soon though with the intense medicine they put me on. The first day I took it, I turned off the lights to go to bed and saw this dim light flashing constantly. I thought I was gonna have a seizure and felt so dizzy. It also causes mild hallucinations every night, which is pretty interesting. Thankfully the flashing lights are not that apparent, but the dizziness still continues. My vision is getting so blurry, I have to wear glasses everywhere.
This degree of gvhd doesnt happen to most people...it was not supposed to happen to me with such a great match...only about 30% of people get gvhd at all. I'm on two strong steroids and this pro-graft medicine that's expected to stop this and turn things around, but it's taking a while...my liver was finally healing from the previous complications, but it got about 7-8 times worse in the last couple weeks. I still can't taste ANYTHING, I could be eating grass and I wouldn't know the difference. I basically force myself to shove food down my throat, because the steroids make me so hungry.
There's not much the doctors can do other than just wait for it to pass. Between the last problem and this, I had about 4-5 days where I could eat and taste things almost normally...it made a huge difference. This has taken away all of my strength, I've never felt this weak before. My hands shake all the time, I drop everything. I lost 10 lbs. all because of this. I was afraid I'm not gonna make it through my bday, but I just have to hope this is the last big issue and after this I can go home. I've been here so long, I forgot what it's like to go outside and feel the air. In the meantime, I just need to keep eating and move as much as possible. This is the hardest I have ever to push, but if that's what it takes, I have no choice...I have to wake up and go to the hospital and just dream of being done with this.
Oh the worst problem is that gvhd completely kills the skin on your body. It's all peeling off now and couldn't be a bigger mess. The entire layer of skin on my legs, arms, hands and feet is coming off. Apparently, a new layer will grow, but again who knows how long...
This is where I've been, this is my life. But I'm pushing til my last breath. Three months and counting...
Monday, March 5, 2012
Graft vs. Host Disease and an Unknown Enemy
A friend sent me a link to the trailer for a new documentary coming out, called "Crazy, Sexy Cancer." As always, watching something like this is hits close to home, but this case is a lot different than mine. It's about a stage 4 liver cancer case with no real cure and completely experimental treatment protocol. Now, think about that...you find out you have cancer and then the doctor tells you, well we don't know what to really do. How do you not blow the world up? When I see or hear about a young cancer patient, my mind just starts running in circles, because it's doesn't happen that often. I start wondering how they felt on the day they found out, if they go through the vicious cycles of optimism-anxiety-depression and back to optimism, etc. This girl answered a lot of those questions.
The other day I saw a young patient at Hopkins who looked just like me: no hair, pajamas, slippers, hooked up to a large IV machine indicating she was in the inpatient phase of the treatment. The difference was she was white and much lighter, but I knew she had had a good amount of treatment, because I know what your body starts to look like (she was around my size and height) after the chemo/radiation. It was the strangest feeling to see someone in such a similar situation and know the way I felt when I looked at her is probably how other people feel when they look at me. I wanted to talk to her, but she looked pretty tired and had company, and I just didn't have the energy to start a conversation.
What's been happening the last few days? Well, two things. I have a pretty infuriating rash all over my body, additional liver damage and abdominal pain: all signs of graft vs. host disease. That means my body or what's left of it (mainly the organs, the bone marrow has been replaced meaning the blood is now a little different) is starting to realize that the new blood cells are different. Noticing these foreign cells, my body (the host) starts attacking them (the new cells are graft.) There is nothing that can help with the rash or stop it once its triggered. The other day I was awake from 12-6am trying to stop the madness, but nothing I did helped it. I even took a cold shower at 4am, something I haven't done since I was in India, but no luck. I called the on-call doctor and she pretty much said, I'm sorry there's nothing I can do, just take some sleeping pills and hope they knock you out.
Problem #2: I also have some sort of virus that's causing flu-like symptoms. It started with very high fevers and a sore throat, but has now really taken over my mouth too. It's basically like having mucositis again, but in addition to the graft vs. host in the mouth. There are ulcers, cuts, scratches, bumps, etc. everywhere and it hurts to even drink water. My throat is worse. Every so often, it starts closing up, meaning gets very very dry and I have to take a painful gulp of something or cough a lot to try to just breathe again. I can feel mucus running down from the back of my nose to my throat and sometimes I try to cough it up and it comes up yellow and bloody. Needless to say I can't eat anything anymore and I'm dropping a lb. a day. I feel so beat when I walk and it's getting harder and harder, because all this has been happening for about a week. A lot of testing has been done but nothing has been found. Tomorrow they're going to take a scope and drop it down my throat to try to see what's going on, so that's kind of the last hope in finding out what's causing this and maybe getting some medicine to treat it. It's making my life a living hell, and is one of the nastiest problems I've had in this process.
Today is day +60. Usually, you are released from the IPOP clinic to go back to your oncologist at home on this day. The two issues I have right now are what's stopping me from being able to go home. I try explain to people why this is hard to accept and I can't just sit here and think, well, I'll be better soon and then I can get out. We haven't even figured out what this is yet. I can handle the mouth pain, how many times do I have to? This occurrence of pain is completely unnecessary and doesn't happen to anyone. How many times do I have to stop eating? I've been enduring this torture for 6 months now, the first time I did treatment, everything happened in about 5 months or so. After that I just healed. I thought I was getting close to saying OK, the worst is over, but I would've had to bite my own words. I even have to start biting my thoughts now. All I wanted was to be home this week, because my brother is there, but it's not going to happen. I haven't seen him at home since he left for college, because I've always been in hospitals when he came home for breaks. I can't take many more days of this, I'm sick of explaining the problems I have to people and sick of just trying to push through the pain without knowing, once again, what these things are and how they're going to going to be fixed.
The only source of happiness this week was the video that all of my friends made for me. The idea came from one of my closest friends and with everyone's contribution, the video turned out amazing. It's one of those things I'll watch when I'm 60 and think wow, even in the worst times, there were so many people who cared and made me smile. Thank you so much Ms. Parmar and JC for making this happen, you have no idea what it means to me. It made me forget all about my pain for a bit and hey, there's nothing more I could ever ask for!
The other day I saw a young patient at Hopkins who looked just like me: no hair, pajamas, slippers, hooked up to a large IV machine indicating she was in the inpatient phase of the treatment. The difference was she was white and much lighter, but I knew she had had a good amount of treatment, because I know what your body starts to look like (she was around my size and height) after the chemo/radiation. It was the strangest feeling to see someone in such a similar situation and know the way I felt when I looked at her is probably how other people feel when they look at me. I wanted to talk to her, but she looked pretty tired and had company, and I just didn't have the energy to start a conversation.
What's been happening the last few days? Well, two things. I have a pretty infuriating rash all over my body, additional liver damage and abdominal pain: all signs of graft vs. host disease. That means my body or what's left of it (mainly the organs, the bone marrow has been replaced meaning the blood is now a little different) is starting to realize that the new blood cells are different. Noticing these foreign cells, my body (the host) starts attacking them (the new cells are graft.) There is nothing that can help with the rash or stop it once its triggered. The other day I was awake from 12-6am trying to stop the madness, but nothing I did helped it. I even took a cold shower at 4am, something I haven't done since I was in India, but no luck. I called the on-call doctor and she pretty much said, I'm sorry there's nothing I can do, just take some sleeping pills and hope they knock you out.
Problem #2: I also have some sort of virus that's causing flu-like symptoms. It started with very high fevers and a sore throat, but has now really taken over my mouth too. It's basically like having mucositis again, but in addition to the graft vs. host in the mouth. There are ulcers, cuts, scratches, bumps, etc. everywhere and it hurts to even drink water. My throat is worse. Every so often, it starts closing up, meaning gets very very dry and I have to take a painful gulp of something or cough a lot to try to just breathe again. I can feel mucus running down from the back of my nose to my throat and sometimes I try to cough it up and it comes up yellow and bloody. Needless to say I can't eat anything anymore and I'm dropping a lb. a day. I feel so beat when I walk and it's getting harder and harder, because all this has been happening for about a week. A lot of testing has been done but nothing has been found. Tomorrow they're going to take a scope and drop it down my throat to try to see what's going on, so that's kind of the last hope in finding out what's causing this and maybe getting some medicine to treat it. It's making my life a living hell, and is one of the nastiest problems I've had in this process.
Today is day +60. Usually, you are released from the IPOP clinic to go back to your oncologist at home on this day. The two issues I have right now are what's stopping me from being able to go home. I try explain to people why this is hard to accept and I can't just sit here and think, well, I'll be better soon and then I can get out. We haven't even figured out what this is yet. I can handle the mouth pain, how many times do I have to? This occurrence of pain is completely unnecessary and doesn't happen to anyone. How many times do I have to stop eating? I've been enduring this torture for 6 months now, the first time I did treatment, everything happened in about 5 months or so. After that I just healed. I thought I was getting close to saying OK, the worst is over, but I would've had to bite my own words. I even have to start biting my thoughts now. All I wanted was to be home this week, because my brother is there, but it's not going to happen. I haven't seen him at home since he left for college, because I've always been in hospitals when he came home for breaks. I can't take many more days of this, I'm sick of explaining the problems I have to people and sick of just trying to push through the pain without knowing, once again, what these things are and how they're going to going to be fixed.
The only source of happiness this week was the video that all of my friends made for me. The idea came from one of my closest friends and with everyone's contribution, the video turned out amazing. It's one of those things I'll watch when I'm 60 and think wow, even in the worst times, there were so many people who cared and made me smile. Thank you so much Ms. Parmar and JC for making this happen, you have no idea what it means to me. It made me forget all about my pain for a bit and hey, there's nothing more I could ever ask for!
Monday, February 20, 2012
Back like Jordan
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.
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.
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