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 =)