Feelin' Peachy

My aunt and grandparents are visiting from DC for the Thanksgiving holiday. This morning I was sitting with my grandmother as she was telling me about the screenplay that she’s been working on. It’s a love story part of which takes place in the Middle East. As she delved into plot details, I had trouble focusing on what she was saying, however, this time I don’t think it was the Chemo Brain. As she described beautiful scene, all I could think about was Iranian food, Iranian food, Iranian food! You see, the last few days I’ve been on a drug called Dexamethasone (sounds deadly, doesn’t it? I can just see my doctors standing over me proclaiming “My name is Dexamethasone, you killed my father, prepare to die!”) Anyway, one of the side effects of these dangerous pills is “overeating that may lead to significant weight gain.” Besides that, my roommate’s mom just made me this huge delicious pot of lentils, which I have been religiously consuming day and night. Despite being on low doses of this medication, mere overeating does not describe my recent behavior. I have been gorging myself with everything in sight. As I chew, food is falling from my mouth left and right. My stomach is an echoing bottomless pit, and the scale must be broken because there is no way that I’ve gained six pounds in three days.

Other than that, my head has been acting pretty funky lately. Instead of growing stubble, it’s been sprouting this strange fuzz which weirdly enough reminds me of peaches, James and the Giant Peach, and peach cobbler. Yummm. I’m pretty concerned about it though. What if my hair never grows back? What if it grows too fast? What if it gets moldy?

I’m going to the hospital tomorrow and I’m not looking forward to it. I have a follow up chemo treatment but it shouldn’t take too long. All I can really think about though is going to my favorite vegan restaurant, The Chicago Diner, and stuffing my face with a humongous veggie burger the size of my head.

The Chemo Blues

“There’s no place like home, there’s no place like home, there’s no place like the days before Hodgkin’s,” I keep telling myself. I look down at my feet and instead of ruby slippers, I see my rainbow fuzzy ones, and every time I stand on my tippy toes to tap my ankles together, I end up losing my balance. My family keeps telling me that they can see the finish line, but maybe I need a pair of glasses. I feel like a fish in a fishbowl, looking out on everyone’s happy lives, while being stuck in a claustrophobic glass container, separated from all my friends. At least goldfish get pretty decorations like colorful rocks and fake castles. Lucky for me, I get appealing IV tubes. I just got back from the hospital yesterday. Getting through the week is pretty tough without seeing my friends. They are always so busy with their own schoolwork and extracurricular activities. The only time I really get to see them is on the weekends. Sure, they warned me about the nausea and the hair loss, but no one ever mentioned the loneliness.

Anyway, upon describing the “fishbowl” syndrome to a friend, I got a lovely surprise in the mail that certainly brightened my spirits:

Yay for my own pretty decorations! Thanks, Dr. Dave!!!

I’m having a great deal of difficulty concentrating on my schoolwork and remembering common words and/or simple facts. It’s like a mental cloudiness that just will not seem to go away. Apparently it is a real side affect of chemo that isn’t terribly uncommon. It affects approximately 20-30 percent of patients undergoing chemo. Some sources say that some people experience it for up to four years. Oh, Goody!

Anyway, that’s really all that’s being going on with me-- ‘Till next time!

Another Trip to the Hospital

At dinner we received an emergency-like phone call, informing us that my platelets were extremely low (they were 6,000. 120,000 is considered normal). In a nutshell, this means that I could potentially bruise and bleed easily. They said that I should go to the emergency room immediately to receive a blood transfusion. This will be my third blood transfusion. I got the other two when I had mucositis. Right now, I’m sitting in the hospital, accompanied by my parents and my good friend and fellow vegan Mallory, waiting for one unit of platelets from the blood bank which is currently being rushed over in a cab. Mal and my mom both look like monkeys in their facemasks, but at least they don’t look as silly as my dad who hasn’t yet figured out that his mask is upside-down. My nurse is pretty cool. His name is Tim, he’s bald like me (except for his goatee) and has this awesome dragon tattoo on his forearm. Watch out, Matt. ;)

Trick or Treat

When one gets diagnosed with cancer, trivial things can suddenly become a big deal. On Halloween night, a few friends together with my brother and I decided to go trick-or-treating, seeing as it was our last year that we could get away with it. I untied my headscarf, stole a pair of my dad’s wire-rimmed glasses, and grabbed a sheet and a walking stick. Hunched over, I introduced myself as Gandhi. So, from house to house we went, chewing on Twizzlers and Laffy Taffys as we walked. Not being quite the highly coordinated, aged Indian man that that I thought I was, I toppled over, somehow resulting in the mysterious removal of my shoe and sock and some very minor scratches on two of my toes. I initially thought nothing of the matter and didn’t feel a thing. But Tuesday night (three days later), my foot started hurting. The next day I awoke to a throbbing and swollen foot. Frantically, my father called Ghostbusters! (Just kidding, he called the hospital.) We learned from my pediatrician that these tiny scratches were, in fact, infected. Unable to walk, I resorted to the use of crutches. They put me on Clidamyacin, an antibiotic. Since then, the swelling and redness has decreased considerably. Halloween was not the only night we got a fright.

From left to right: Gandhi, the wicked Mallory,

effeminate Aaron, and unibrowed Ari.

The Best Medicine

If I've learned anything from this hell of a roller coaster ride, it's that no matter how strong the pain killers are, no matter how many chocolate soy ice cream smoothies you drink, no matter what your doctor tells you, nothing, and I mean nothing in the entire world can make you feel better than your friends can. I must be the luckiest person alive to have such amazing ones. On Tuesday, I was having the official worst day of my life. I felt like crap, didn't want to get out of bed, and was completely unmotivated to take a crack at my schoolwork that had been piling up since my last trip to the hospital. After an unproductive day of moaning, groaning, and drowning myself in misery, I was feeling pretty sorry for myself. That night, my dad had just walked in from work, and he told me to come downstairs and look at what he had found at the train station. There, standing in our foyer, were my roommate Dawna and my boyfriend Matt. I tried to run down the stairs to hug them, forgetting that my fragile body is no longer capable of what it used to be able to do. Toppling on my surprise guests, I welcomed them. I could not believe they were standing before me. They had taken two trains, all the way to Highland Park from Aurora to see me! They stayed the night, and completely turned my mood upside-down. Too bad they don't sell this stuff at Walgreens!

Morphine

I have been in the hospital for 5 days now. On Saturday, I was taken to the emergency room after feeling weak and not being able to swallow food or water, and was diagnosed with mucositis ( the painful swelling and blistering of the mucous membranes that coat the digestive tract, a common side effect of chemotherapy). I am in severe pain. This is my 3rd trip to hospital in 2 weeks. I am so dehydrated that I can barely stand for more that a few minutes without getting dizzy. It is difficult to talk, my speech is slurred, and I’ve been told that I hardly sound like myself. My face is puffy and red. I can’t really open my mouth, let alone swallow my own spit. Instead, a suction wand (like the kind they use at the dentist) drains my mouth and all the spit goes into a little bucket at the side of my bed. I like watching the spit level rise. Right now it’s at 350 mL. The only thing I am eating or drinking is popsicles. I just hold them up to my mouth and let them melt away as they numb my gums. The pain in my mouth and throat is partially being controlled by morphine—lots of morphine. I am on a continuous morphine drip and in addition, I have a special button near my bed that allows me to add a little boost of extra morphine every 10 minutes for when I really need it. Every so often, when I reach over to press the button to increase my morphine intake, I recall a specific memory of my friend Linzey, the one with a brain tumor, who I have mentioned before in a previous post.

Never in my life had I seen anyone in that state. There she lay, motionless, eyes fixed on the television. I noticed that she had gained weight; her petite body was now heavy. The circles under her eyes had never been this dark. Her breathing was heavy, and it was clear that she had never been this weak in her life. When she finally noticed my presence, I tried talking to her, but I realized that she was too weak to respond. I found myself telling her things, to deflect my real thoughts. Occasionally her head slightly nodded in response to certain things I told her. Suddenly, I saw her struggling to get a groaning sound to come from her mouth. I was in the room alone with her. Fear struck me, and I was unable to move. It was obvious that she needed something, but I wasn’t sure what that something was. I tried to ask her to point at what she wanted, but she just kept breathing heavily. I feared that if I left the room to go get her mom, she would be alone, and even though it was only for a slight moment, who knows what could have happened? After realizing that it was the only thing I could do, I frantically sprinted around the house looking for her mom. I told her that Linzey needed something but I didn’t know how to help her. Her mom followed me into the room, and I was relieved to see Linzey in the same position as I left her, heavily breathing away. It was almost as if a mother read her daughter’s mind. She knew exactly what Linzey wanted. After rummaging around in a bedside drawer, she pulled out a clear syringe, filled with a liquid form of morphine. I turned away as she emptied the liquid in Linzey’s mouth, drop by drop, drugging away the pain. All of that time I had just spent with Linzey, she was suffering, and I had not even realized it

During both moments, the present and the one described above, I am experiencing pain. Currently, I am experiencing the same physical torture that Linzey was so familiar with. I am building up a tolerance to morphine, and thus must take higher doses every day for it to be effective. Side effects of this medicine include a swollen red face and itchy skin. I am on even more medicine to counter these side effects, each of which have side effects of their own. When I recall this one particular snippet of my time with Linzey, I experience a much different type of pain, one of hopelessness and fear. There was absolutely nothing I could do to help my friend. Linzey passed away before I was able to visit her again.

I was planning to go to San Antonio with my mentor tomorrow to present some psychology research that I’ve been working on for an entire year, but that now seems impossible. My situation, unlike Linzey’s is merely a waiting game, a test of my strength and patience before my white blood cell counts rise.

Justified Fear

The after-chemo nausea is definitely not supposed to last this long, or at least, it's never quite hit me like this before. I'm throwing up day and night as if it is an instant reflex to eating or drinking. I have trouble holding down water, and I can feel myself getting dehydrated. I've already lost my taste buds and six more pounds, and I can feel the mouth sores forming again.

When you step into the hospital, time seems to freeze and you might as well throw away your watch. Just because it is dark outside, you are not guaranteed sleep. Nurses operate like small elves, working tireless hours 'round the clock, coming in and out of your room, responding to the never-ending beeping of your pump. The chemo nurses wear full body protective layers, terrified that a drop of chemo will touch their skin, yet they have no problem pumping the same chemicals directly into your veins.

Given how I feel today, I understand their fear.