Wednesday, September 23, 2009


I've learned that there is a phase of a few days, generally starting around a week after the very beginning of a chemo cycle, when your white blood cell count is at its lowest. This means that your body's immune system is most susceptible to disease, a phenomenon called Neutropenia. For this reason, I begin taking Neupogen shots the day after each chemo cycle ends until my white blood cell counts come back high enough that the doctors are no longer worried about me getting sick before the next cycle. I, of course, loathe needles, and am entirely at the mercy of my parents who have both "learned" how to administer the shots.

The shots are supposed to be given to fatty areas on my body. But, having lost about 30 pounds since originally being admitted to the hospital, the only bit of fat I can find is on and around my buttocks. So, every night we take the shots out of the refrigerator about an hour before its administration, and I prepare the area with numbing cream and I ice it down to make it as numb as possible. Nevertheless, the shot is always painful and burns the whole way through. I can honestly feel the fluids entering my body from start to finish.

Anyway, the point of this story was that the week after my first cycle of chemo, I became very neutropenic. I was weak and tired and extremely nauseous, and we were told that if my temperature were to reach 100.4 degrees Fahrenheit, I must be taken immediately to the emergency room. I, of course, was determined to stay below that magic number and was laying in my bed, eating when I could, but on one particular day, things were simply out of my control. I felt progressively worse as the day went on, and my temperature rose accordingly until I hit exactly that magic number, and before I had the chance to plead my case my parents were already calling the hospital and one another in a complete frenzy, as if taking a few extra minutes to think things through would have ruined everything. I was skeptical regarding the need to go directly to the hospital, because I always thought that body temperatures fluctuate and could come back down just as quickly as mine had risen. Then, I climbed down the stairs to put numbing cream on my port so it could easily be activated at the hospital, whereafter I climbed back upstairs to grab some clothes in case I had to stay overnight. The climbing made me nauseous to the point that before I knew it my arms were draped over the toilet and I was violently throwing up any available stomach contents, which were scarce at the time. It was a meaningful experience to me because it was the lowest I had yet felt since it had all started, and I resented it like hell. My mother stood in the bathroom doorway watching me puke, waiting for me to be ready to go to the hospital. I resented her for that. I resented the miserable feeling in my stomach; the first time giving up really crossed my mind.

We rushed to the hospital, and I tried to ignore the bumps and stops and goes of the car ride, which, to this very day make me feel sick. Finally, we got to the Emergency Room, approached the nurse who was sitting at the computer and appeared to be in charge of things, and I gave her my name and told her I needed an isolation room, expecting results. My mom had already talked to a nurse on call, who said she had called down to the E.R. and they understood that in my situation I had to be put immediately into isolation and be given antibiotics. Conveniently, the nurse at the computer looked up at us and said something along the lines of, "Umm, your name isn't in the system, so there's nothing I can do for you right now. Please go take a seat with the others in the waiting room, and I will let you know when I can help you." She pointed over to the corner of the waiting room to where I assume she expected me to sit down and wait. And, despite the struggle I was already going through to maintain standing, I turned over to where she pointed only to find two open seats directly next to two other patients shivering underneath a dirty white bedsheet. I thought to myself, I might actually die if I go sit with them. Like seriously, I could actually die.

My mom tried pleading her case with the woman, who was clearly incompetent, and we sat in a staff room trying to figure out what to do until finally my mom got back in touch with the original nurse who had told us to come down to the E.R. It was then clarified that we were supposed to deal only with the pediatric E.R. Apparently, the adult E.R. here is a complete mess and should be avoided at all costs. Of course, there was no way for us to even know that there were separate Emergency Rooms and that one was the right one.

When we finally walked around to the pediatric E.R., I still had to go through the administrative stuff (checking vital signs, getting a bracelet confirming that I actually was me and not some sickly person posing as me), and they brought me to my own quiet room. But, after about twenty minutes of much needed rest, they told me I had to go to another room since the room I was in was reserved for something else. I was brought to a small, box-like room with a tiny wooden bed and a sink, not to mention a desk next to the door which doctors showed no remorse in using as their source for stocking up on whatever they needed. So, I was trying to cushion myself as best as I could in my small wooden bed, and doctors were regularly opening the door, apologizing, rummaging through the desks, and leaving, most times just leaving the door open. The walls, in this clinic, were paper-thin, and I'm pretty sure every other person admitted on that night was an infant with the lungs of a diva. Obviously, all I wanted to do was lay down and go to sleep, so that when I woke up the anti-biotics would have worked and it would all have been over and I could go home. The screaming, of course, was incessant.

We were given a nice surprise when one of the nurses sheepishly entered the room to tell us that they had given me an anti-biotic that was a close relative of penicillin. Now, this wouldn't be so much of a problem except that penicillin is the one thing in the world to which I'm allergic, or have been in the past. So, when I check into the clinic here, they ask me what I'm allergic to and I tell them penicillin, and they give me a bracelet so everyone knows. And still, before anything is given to me in I.V. form, they ask me my known allergies in order to make sure they are not about to give me something that could result in a terrible allergic reaction. Somehow, when the prescriptions were written on this particular night, one person's mistake got past three or so more levels of people meant to check on the work of person #1, all of whom were aware of my penicillin allergy. Then, in addition to trying in vain to fall asleep in the small wooden bed with the apologetic doctors coming in and out of the room for supplies and the deafening sountrack of crying babies, I had to try to manage my nausea and relax while worrying that at any moment I might break out into uncontrollable hives and who knows what else? Fortunately, the hives never came, which was a huge relief. The nurses, on the other hand, saw it as an opportunity to turn their potentially serious mistake into a groundbreaking revelation about my medical tolerance.

My mom and I spent 8 1/2 hours in that small room before an overnight room was ready for me. A short, stocky man then came to transfer me upstairs, and he had no trouble asking me what I was doing the children's oncology at my age. Even he had no idea that children's illnesses could have so broad a scope, but for me it was just added insult to injury. The incompetence of some hospital workers has never ceased to amaze me, but it was still shocking to me that it had taken so long to find a room, even though the nurse at the beginning of the night told the clinic that we were on our way when we left our house and would need a room. Even on days when it's scheduled for me to start chemo, I have to wait in the clinic for hours upon hours for a room to be ready for me and chemo usually starts somewhere betwen 9pm and 12am. And these are days when it's planned in advance for me to start chemo! I just don't understand it. It makes sense to me that hospitals have a limited number of beds at their disposal, but it isn't right to have me prepare for something as unenjoyable as chemo if you're not even going to do what you need to do to ensure that it happens for me.

It's just another example, I guess, of things being out of my control and just having to go with the flow as best I can. I could also mention that when my hemoglobin is low (which is like being anemic, or having an iron deficiency), they have to give me blood transfusions which can take anywhere from 5 to 10 hours and is never something I look forward to, but I suppose can help give me more energy. On the bright side, I haven't been severely Neutropenic since that first cycle when I'm sure my body was in great shock. My blood levels drop after each cycle, which tells us that the chemo is really working, but I've been good with the Neupogen shots and my immune system hasn't dropped the way it did that very first time. Furthermore, it seems like my body is now making its own platelets, which is a great sign for its ability to fight back against the bone marrow, hence, platelet-attacking tumor. My point to you, I guess would be that our bodies can get used to the treatment and you don't have to fear being weak and totally susceptible to illness every single cycle, though I know I'm sure I don't need to tell you to be cautious. It's a marathon, not a sprint, with these things. And the rollercoaster will inevitably have highs and lows. The better we deal with the lows, the better off we will be in the long run.