Neither Victory nor Defeat

I'm sure you've come across the following quote by Theodore Roosevelt at some point:

Far better is it to dare mighty things, to win glorious triumphs, even though checkered by failure than to rank with those poor spirits who neither enjoy nor suffer much, because they live in a gray twilight that knows not victory nor defeat.

I read this a few years ago for the first time, but failed to really identify with it at any level until I came across it again last year. What changed? Why did I all of a sudden feel like I knew what he was talking about? The answer is not as obvious as you might think...

Just to be clear, I never felt like I was stuck in the "gray twilight" when my life was normal, pre-dec '09. If anything, I was thriving at the bright end of the spectrum and couldn't complain at all about where I was in life. There were always small failures and bad days, but they were outnumbered at a healthy level by some significant accomplishments and some great weekends. This is mostly how everyone I know lives; that's where the idea of "normal" comes to me from. Does the above quote refer to that life as the "gray twilight" then? I think when my situation changed so drastically, not only once but twice, I started having a completely different outlook on the same things I read or heard about before. As a defense mechanism, I looked at this same quote and now thought that the task I was involuntarily assigned was mighty indeed. I was to embark on this tough "journey" and either come out victorious or defeated. Beyond the fear, there was a sense of pride as opposed to the humility I was always portraying and I felt better reading something that directly says it's better to be set apart, to be given a chance to feel the rush of being victorious at the riskiest game one can play. Up until this point, I have found nothing else like this quote that helps me define what it feels like to be one of the fewest of my kind. 

Finding this explanation was a turning point in my outlook on this entire experience. Regardless of whether I thought I was capable of winning, I had to adopt this attitude. It's not easy to handle the amount of pressure a treatment course like this has and interact with people with normal lives, so you need to have a justification for the great disparity between your circumstances and theirs. The twilight, once gone, is all you want back, so a reminder about why "suffering" is necessary for victory does help a lot. It promotes hope, because it implies there's a chance that one day it'll all be over and you'll tell it like an epic memoir. From the amazing distance of the future where time has created a soft enough cushion between now and then, in efforts to make the memories of this time more picturesque. 

If asked the question of whether they would rather live a monotone, average life or a life with great successes but also failures and risks, I'm not sure what people would pick. I can only say this in retrospect, but if someone asked me the same question, I would ask for a hybrid of both. Teddy Roosevelt expressed a lot, but I think he may have overlooked the fact that it's a little unnecessary to experience so much suffering. You see, it eventually starts to take away from the sweet taste of the victory that is to supposedly come, because we always exaggerate the bitterness and understate the sweet.

Where do I get these thoughts? They come to me when at the core of my bones I feel this intense pressure everyday that is meant to signify the fruition of cells emerging into the bloodstream. The best description of this feeling I can come up with is that it feels like your lower back and chest is vibrating. Vibrating internally. This happens randomly and also when I squat to sit down or try to get up from a moderate to low seat. It sounds painless and harmless, right? I don't know why it's not though, especially when it's localized in my limbs as opposed to my core and lower back. I was hoping I would be immune to it by now as it's been a staple symptom for a while, because feeling like you're going to burst is always going to be scary no matter how many times you've felt it in the past and still made it to this day. At least it means that my cells are growing...give and take, folks. 

Desensitized

Sometimes my left knee just gives in. It doesn't really happen that often when I walk anymore as it used to recently, but it isn't infrequent either, especially when I'm dancing. It hasn't ever fully collapsed; I always catch myself in that split second, but there are no guarantees as to how reversible the damage would be if it actually happened. Once again, it comes down to whether I should take the risk and push myself so that one day it's strong enough to hold all of my weight while I'm on my toes or not. This is the way I did it the first time, so I'm very familiar to this route and was lucky to not be terribly injured back in those days. In return, the reward for going outside the lines and trying things harder than those recommended for me was huge. I cut the estimated recovery time in half, if not more, in terms of getting strength back in my bones and muscles. Most importantly though, my "dead" (meaning loss of nerve control due to trauma and chemotherapy) feet started to come alive much faster than what the doctor told me. His estimate was something I was not willing to compromise with, so I pushed the boundaries not even knowing whether it was worth it. In retrospect, those were the days that I worked hardest towards a goal, which was to get my life back, and I achieved it. This is going to be a big repeat of the same process. I guess I must be too good of an example of how to go from rock-bottom to the top for them to not ask me to do it all over again.


How does it feel to go from being extremely weak to normal again? If feels amazing and scary all at the same time, because I've done it before and I know the amount of effort it took. Every day that I wake up in pain from having overworked my bones and my muscles, I feel more accomplished than I ever have before in my life. A lot of times at night though, when I feel cramps in my body, it wakes me up and I hope so desperately that it's exercise related and not a signal that something is starting to go wrong. The two kinds of pain is not highly distinguishable and this is why it's very hard to know whether you're going in the right direction or not while on the road of recovery. I must say, it's almost miraculous that your body can sustain so much damage and has the ability to undo a lot of the damage over time. At least this is what I felt when I was almost back to 100% before the relapse. We'll see in the next few months if it's possible to get as close the second time around where the toxicity was at another level and the length of traumatic experiences was longer. 


Anyway, this is what I've been doing since I got out of the hospital, for those who have been wondering. I've been making all kinds of progress from being able to control my body better to getting the control back in other aspects such as finances, etc. There's always something to fix in the house or some paperwork to fill out for my insurance company or financial aid. Most of my days are consumed with this busy work, but recently I've added a lot of opportunities to get out and get used to the outside air again. I'm working towards making the real world match the expectations I've developed from being deprived of a normal life. This match is often misconfigured as deprivation lasting months long leads to unrealistic expectations. Missing even the most basic interaction with other people on a daily basis creates the need to rely on memories of such interaction, and we all know memories tend to be much more pleasant and dream-like than actuality. Every single event that you miss, every single day spent without going about your normal routine starts adding up to the never refillable gap between when you had control of your life and your current situation where you're at the mercy of your circumstances. The emptiness that I'm referring to as the "gap" is what the expectations mentioned above are used to fill. Unfortunately, the problem with this approach is that once "normal" life starts to seem closer and closer to your reach again, this is when you really realize that the expectations you've developed for it are actually way too high. 


Therefore, you start to become somewhat desensitized to new experiences as you encounter more and more disappointment. All of this happens at a subconscious level of course and only in retrospect is it even noticeable, let alone explorable. I think I figured it out just in time, so that I can at least be aware that this is happening and try to revert to the hopeful outlook that I'm so good at conveying. 

BMBx #10

BMBx - Bone Marrow Biopsy. Thursday 6/28/2012. 

Tomorrow will be the 10th time I have to endure this procedure. Hands down, this has been the single, most painful of all medical procedures for me, because even though it lasts about 5-15 minutes depending on the technique and experience of the doctor or nurse performing it, there's a baseline for the amount of pain you'll feel.

In comparing all of the painful events that have taken place in the last 2.5 years, there are two different types of pain: acute and chronic. Acute to me means an extremely unbearable instance of pain and chronic is mostly long-term pain, which in the recent past has also been largely unbearable as waking up everyday with the same feeling of something destroying your body adds up to a burden more than one can handle. A BMBx belongs to the acute category and the only way for me to convey how deep into your bones they reach with that needle is through this video. It's one thing to try to put into words what exactly they do, which I don't think I can even fairly accomplish, but a whole another to have a video of the entire procedure.

http://www.youtube.com/watch?v=qfOeGWRmyl0&feature=relmfu

http://en.wikipedia.org/wiki/Bone_marrow_examination

 I don't exactly act like this girl when I'm in there anymore as I'm well aware of what is to come, but the first time they performed it on me, I felt as if I will never be able to walk again due to this giant hole being drilled into the back of my hip. My bones were so strong at that point that the nurse practitioner couldn't even insert the needle deep enough into the bone marrow to be able to take an aspirate sample. She drilled me for 10 minutes as I laid there wondering when this is going to be over and screaming in pain. Eventually, I was sick of screaming and started to cry, because I didn't know why I deserved torture of that extremity and started a  mental list of the darkest moments that I knew I would experience in the months and years to come. She finally quit and left to ask the doctor what she should do and he told her to just start over and try the left side. I do not understand why they did not choose the left side to begin with as I'm a right handed person, so my right side is much stronger than my left...She came back and told me this, but gave me a 30 minute break in between the two tries.

Those 30 minutes were eternities to me. The darkest eternities. Imagine having felt that degree of pain for the first time and thinking that wasn't even as deep as they want to go. How much worse is that going to feel? How much longer is that going to take? The worst part, repetition of the entire procedure, one more hole in the hip and soreness for months on both sides. Thankfully, she succeeded in cracking into this one and took the aspirate. They use a hollow needle as the base so that they can insert another one to pull out the aspirate sample. When they're doing this,  it feels like someone is pulling the life right out of you. I never knew what bone marrow really was, but when they took an aspirate from it, I knew exactly deep they went in and wondered how that part of my body will ever repair. Older people probably faint when they're experience this step. If they have a sufficient amount of aspirate, they move the base in deeper to get the actual biopsy, meaning a chunk of your bone. All of this ideally is done within 5-10 minutes, but most of mine have taken longer. At Hopkins, they did a very in depth biopsy, where the aspirate was taken about 4-5 times. Usually, having this done once during the whole thing is painful enough, but that day, I was very, very close to losing consciousness due to pain. These days, I barely make a sound when the pain hits me, but it takes a tremendous amount of self control to not beat the crap out of the person doing this to you. I just try to grab onto the bed I'm laying on or whatever else is within reach when the pressure along with the pain starts. 


The best strategy is to just not think about the pain until it actually comes, because that is a complete waste of time. 

What a G

At the doctor's office today, a student was shadowing my oncologist. Before coming in to see me, they discussed my case and I just happened to be in the room right next to them. It was pretty weird hearing him summarize the entire case from the beginning until now. Here's what he said to the student:

"Our next patient is a young woman with Acute Lymphocytic Leukemia who I diagnosed about 2 and a half years ago. She received what we call the hyper-CVAD chemotherapy regimen and she handled it very poorly requiring us to stop the treatment halfway. She experienced extreme toxicity and remained in the ICU for quite a bit of time and developed an uncommon complication that patients sometimes experience with chemotherapy called, Reversible Posterior Leukoencephalopathy Syndrome (PRES), meaning swelling of the brain causing temporary seizures and brain damage. Over the next few months after that, she recovered, but couldn't handle maintenance chemotherapy either. She did go into full remission following the first cycle of chemo and did well between the critical illness following the initial treatment and the relapse. The relapse required a bone marrow transplant, but her insurance company required her to choose from either Johns Hopkins or VCU for the procedure. The problems with the seizures due to the Reversible Posterior Leukoencephalopathy were seen recently with another trip to the ICU post the transplant process which included full body radiation as well as high dose chemotherapy generating similar toxicity as the first round of treatment. She was at Hopkins for the last few months, but now is back in the area and we are following her closely. After the initial transplant protocol, there were problems such as GVH, CMV, liver damage, etc. She requires blood transfusions due to the medications she is on for these conditions as they reduce the ability for the marrow to produce new blood cells as well as neupogen shots for the neutropenia. The comprehensive metabolic panel (CMP) pretty much looks normal now, with the liver healing over time. Let's see how she is feeling today."

Hearing such a concise summary of all that has happened since the beginning gave me an outsider's perspective that I never get. It's always me reflecting on my own condition. I wondered what the student thought before he came into the room to see me with the doctor and what he expected my present condition to be. He probably thought I would be in a wheelchair or extremely weak where I required a lot of help walking and definitely not expecting me to say that I'm doing well when the doctor asked, "how are you doing?" I could sense some degree of relief in his mannerisms after our interaction, but he entered with a surprised look on his face. Anyone who hears the details written above or in my medical records would not expect me to be where I am today.

I can imagine what they think in their head once they put together a picture of all that's written above. That picture is not what I look like. It's not at all what I feel. I got lucky to have survived the worst, but after that, I did everything I could to undo the damage, because I wanted my old life back and no one was going to just hand it to me. Not even the passing of time. These students read about me, and then they come see me, and when I walk away, they must think, "wow, what a G!"

An article explaining PRES:

http://www.kma.org.kw/kmj/Issues/June2006/Original%20Article/78-04%20Reversible%20Posterior.pdf

http://www.newyorker.com/online/blogs/newsdesk/2012/06/atul-gawande-failure-and-rescue.html

Good article.

At times I just think I'm going to burst and the aftermath will be no messier than what has been created of me in the last 8 months. People are sick of hearing the same thing over and over again - why I can't see them and how my blood counts are too low. Half of the time they don't even understand what that means and having to explain over and over again, I just don't have the patience for that any more. They don't have the patience to keep asking me when they can see me and get a vague answer. Over time, it takes a toll on those relationships no matter what.

Why is my blood not growing? Why do I need to get transfusions every couple weeks or so? Well, mostly because of the complications that happened from March until now. They are resolving, yes. With a lot of medication and a lot of resilience, I am stronger than say a month ago. I couldn't walk then without some support, but the strength has been coming back. The only setbacks are the days when I'm losing blood and my cells are dying, but even on those days, I can go about my daily routine. My fear now is what if this is a long term condition? What if it takes years for my bones to make their own blood and in the meantime too much passes creating more and more health issues. People keep saying, oh a few more months and you'll be fine. Well, that's no longer a guarantee. It's not a promise. All the doctors can assess is a day to day report, there can't be any forecasts.

A lot of times, I'm neutropenic and have to say no to even people coming over. I can't go anywhere myself during the day because the sun burns me. I haven't gone anywhere since Jan. 1st except the hospital and the doctor's office. What kind of a mental condition do you think that has put me into? Don't you think I'm gonna start taking risks now and not wait for my cells to grow? I have to balance the risks I take with the risk that this may always be the case and waiting is just a waste of time. I'm not getting any younger and the last time I waited for stuff, it was the wrong thing to do. Why? Look where I am now. What if I never took a risk and danced again and just thought ok 3 years from now, I won't be doing chemo and I can do whatever I want? I would have no new memories to live off of now. That's all I do now - live off of memories. There's no guarantee even now that I won't relapse again and that in a few months, I'll be doing whatever I want.

I know, I know, I should just be happy I have a second chance. A lot of people in my situation don't get that. I saw a young patient the other day at the doctor's office looking at his blood report and felt sick to my stomach. I knew exactly what he felt before he was handed that piece of paper and having it in his hands finally and interpreting the results are one of the scariest things I have ever felt in my life. I wanted to hold his hand and hope that he's as lucky as me or even luckier and that the fact that his hands were also shaking didn't mean he was expecting something awful. A lot of time, we just expect nothing and that's the best plan, because wasting time in formulating anything beyond a few days at a time is foolish when sitting in a cancer patient's chair. If you show up at your doctor's office every time hoping to see unrealistic results, the disappointment is too great; there's no need to spend time thinking about the results of your biopsy or blood tests. Take the day you have off and chill. Who knows, tomorrow they might send you to the hospital again. I drove by INOVA Fairfax before the relapse with an amazing fear and just wished so badly that I wouldn't have to go there again, but what was the point in that? I've added Hopkins to that same list of places that scare the bajeesus out of me.

Highs and Lows

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.

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 =)

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...

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

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. 

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...

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!

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.

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.

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.

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:

• 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

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:

• 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.