It's a Monday, so I had a visit from my nurse, Maureen. I just received my blood results:
For the most part everything is looking pretty good. My white blood cell results are artificially high because I got a shot called Neulesta, which essentially boosts one's immune system. The shot itself costs $4,000. Yes, the decimal is in the right place. Four thousand dollars. Luckily, $3,940 of it is covered by insurance. Can you believe that I need 6 of these? I am so grateful that my family has health coverage. I am finally getting over my cold, which long overstayed its welcome, as snot trickles its way down from my sinuses to my stomach. I am going in for my third round of chemo this Thursday. I have to stay at the hospital overnight, and frankly, I'm not excited. I'm not prepared for another round of mouth sores, achy bones and nausea, but ready or not, here it comes!
I can't believe it. I feel like a Disney princess, but somehow 'The Great Baldini" doesn't sound as elegant as Cinderella, Jasmine, or Sleeping Beauty. Either way, last night was a dream. I went to the homecoming dance at my high school. I was voted Homecoming Queen, and my boyfriend Matt was Homecoming King. Even as I sit here typing this I can't believe it. It is amazing how my class makes me feel like such a part of them, even though I am not physically at school. I am so grateful to everyone for their support. Last night I felt cancer-free and on top of the world.
This Saturday, I am going to my high school's homecoming dance. As my roommate Dawna and I were planning out the evening, she suggested that I come early so that she could do my hair. I started laughing, and she was confused. The funny thing is, she wasn't trying to make a joke. She actually forgot that I was bald. I was blown away by this. Cancer is such a core part of who I am now, but when my friends think of me, it's nice to know that they don't think of me as "Cancer Gabi" or "Chemo Kid." To them, I'm still just Gabi.
The first round of chemo, I barely felt a thing. It’s funny how things change. Now, I feel as if I’ve been stripped of my superhero abilities, thrown to the ground, and humiliated as everyone else points and laughs. Please give me back my mask and cape to hide my grotesque face. When I see people that I haven’t seen before I was diagnosed, they don’t smile at me like they used to… sometimes I get a fake flash of teeth before they look me in the eye and wonder who the hell this imposter is. “You look…(then there is a long pause as their eyes hurriedly search for something to say) …. good.” Ha! I had no idea that people would have such difficulty telling me what they think. Besides the thinning of my eyebrows and my loss of hair, I’ve also developed lovely bags around my eyes. How I wish it was only my physical appearance that was changing, but my mouth stings with open sores and my throat burns like crazy. These pains have made me hesitant to eat, thus resulting in a three pound weight loss in three days. It’s really amazing how many things I took for granted before I was diagnosed. I guess I’m learning the hard way. It’s only round two of what appears to be a six round battle. I guess I'm one-third of the way there.
I went to the hospital yesterday for another round of chemo. As I walked into the treatment room, there she was, a girl probably around my age. She was wearing a bandanna over her bald head and was looking at me, but not staring, as if we had encountered eachother before. Our eyes met, and at that moment something happened. Let me explain. I felt a strange connection with her, a special bond. I felt as if I had been inducted into her sorority. We had both been through the same chemo "hazing," further unified by our scarves and bandannas, tied neatly by well mastered and strategically placed knots. The similarities in our facial features were striking: the paleness, the recessed cheekbones, and the thinning or absence of eyebrows. Months ago, we probably looked like two completely different people. Yesterday we could have been twins. She smiled at me, radiating a special warmth. We had a world in common that we could have spoken about, yet words were not spoken, for none were needed.
The number of bad days are starting to catch up with the number of good ones. I have a pretty nasty cold and I fainted yesterday. “Hang in there!” everyone is telling me. Well, my arms are getting tired and I want a break. My mohawk is out of my line of vision and I’m starting to see the real cancer. All I’m asking for is just one day to walk away from this whole mess and return to my math and science mothership, to sit in on some impossible classes and to eat some Trader Joe’s brand oreos dipped in soymilk with my roommate. I miss my friends. I miss not worrying about taking pills, my temperature, and my weight. I miss being the old me.
The irony of my situation is incredible. A few years ago, I had a friend, Linzey, who was struggling with her own battle against a brain tumor. I was the one paying her weekly visits and making her “get well soon” cards. Unfortunately, Linzey lost her 10-year battle with cancer, and after her death, I started a fundraiser in which my friends and I sold stuffed animal cats (her favorite animal) to raise money for a pediatric brain tumor foundation. When I look in the mirror and see my bald head and thinning eyebrows, I hardly recognize myself. I only see Linzey.
The universe is further mocking me by the number of pills I take daily. Not too long ago, if you came near me with even the tiniest of pills, I would gag and make a whole fuss. Now I down them like candy… six, seven, or even eightat a time.
A third irony is that I’m a three time donor to Locks-of-Love, a foundation where people can donate their long hair to be made into wigs for cancer patients. It’s funny that I could easily be eligible to receive one of these wigs, yet I kind of like being bald. After all, I am the Great Baldini.
As the saying goes, “We cannot direct the winds, but we can adjust the sails.” Unlike my friend Linzey, I am lucky that my prognosis allows me to take charge of my direction.
The other day, my mom and I took a little detour on this wild expedition of ours. Her friend and wonderful photographer, Jonathan Friedman, did a photoshoot of what I like to call “the silver lining.”
My mom and I '"painting" each other.
Here is just one of his many brilliant shots.
Someone whom I consider a very special friend recently wrote to me:“Those wise old Greeks knew that we can only learn joy through grief, as it is only by contrast that we can define anything. "Tall" is only "tall" if there is a "short." So where is the joy in your present state? I would guess it will be in the slowing-down-of-things, in the closer-examination-of-things. The capacity for wonder can substantially increase for you now. Just imagine: you're reading a 400-page book (about an inch thick) and unwittingly, you turn two pages at once. The nerves in the skin of your fingers notify your brain instantly. Your skin can tell the difference 1/400th of an inch and 2/400ths of an inch! We so take for granted this astounding body that carries us from place to place. Taking things for granted is a state of emotional inertia. Not taking things for granted is an intellectual and emotional odyssey. Bon voyage!”
My family departed at quarter to five in the morning for the hospital. Despite the wee hours and my encrusted eyes, my mood was cheery, for at last my troublesome port was to meet its well deserved fate.
We checked in at six am and were met by a very friendly team of nurses, anesthesiologists, and surgeons who explained to us what they planned to accomplish.
My surgeon, Dr. Liu, pointing to my existing port.
I was given a general anesthetic and the next thing I remember is waking up in the recovery room, parents by my side, with a swollen lip and a very dry mouth. The intensity of the piercing pains in my chest were unlike anything I had ever experienced. My lovely nurses quickly provided me with whatever I needed to get through it.
My team of angels.
A friendly visit from my surgeon, Dr. Liu.
The repositioning of my port. Don't I look happy?
At this point, I would have liked to think that I was done for the day, but lucky for me, I still had my second round of chemo ahead.
Yummy.
If I thought my port was giving me trouble, then the pump was Satan himself. It took 3 nurses, many attempts, and an extra hour to resolve this complication. But to their credit, they got it nailed, as I braced myself for the next two hours of chemo.
Me with my medications.
Un personaje ejemplar, mi doctor y mi amigo: Dr. Morales
Aside from the pain in my chest from surgery, my throat felt raw, my head was spinning, and I had a new appreciation for the word "nausea."
Turns out they let me go home, only to return tomorrow for another day's battle. On the ride home, as I lay head on my mother's lap, I felt it coming up from within. I opened the window, and a flare of orange spewed out from behind our car.
Wouldn’t life be different if it were a video game? We’ll in a strange way, mine kind of is… old school Mario Bros. on Nintendo 64, that is.
This whole cancer fuss is like running into a goomba: those evil, brown, mushroom-like creatures. Yeah sure, I may lose a life, but then something magical happens. I find that I am blinking; moustache, overalls, everything. My body quickly vanishes and reappeares. I am invincible, and nothing can stop me now. Although in the game it may last only for a few seconds, this flickering phenomena is here to stay. It is caused by none other than the wonderfully overwhelming support of my family and friends. Every email or wallpost that I get is like a mushroom, adding “1-up” to my total lives. So thank you, everyone, for keeping alive and helping me to conquer the evil "Lym Hodgkin".
On a more serious note, my blood counts are high (a good thing) and so are my spirits.
Twice a week, I get blood drawn for a Complete Blood Count (CBC). I have a port, which is a piece of medical equipment surgically implanted in my upper chest . It makes frequent blood tests and injections less painful. A catheter connects the port to a vein. Under the skin, the port has a septum, through which drugs can be injected and blood samples can be drawn many times, rather than using a painful needle stick in the arm.
The port connects to a vein close to the heart. In my case, the catheter is problematic and does not allow for the free flow of liquids and as a result, my port needs to be replaced, probably tomorrow in a small operation involving general anesthesia at the Comer Children's Hospital at the University of Chicago. Also, immediately following the operation I am scheduled to start my second cycle of chemotherapy. I expect to be admitted into the hospital until Saturday, although it is possible that some of this chemo may be done on an outpatient basis. Sounds like fun, doesn’t it?
CBC results as of 9/08/09:
Mohawk now gone, my outer appearance fits my title: "The Great Baldini."
Our household has been invaded by a relentless army of hairs. The strands have advanced on the battlefield, from the bedroom to the bathroom, to the kitchen, I’m afraid I’m faced with a full frontal assault. Armed with my dust buster, I face this battalion. Although it is an inevitable defeat, this is no surrender, only a temporary retreat. In the words of General Macarthur, “I’ll be back!”
This is how much hair I've lost over the last two days.
Ew. This is disgusting. There is hair everywhere, even on the keyboard as I type. I can run my fingers through my hair and small clumps of hair come out. I feel like an 87-year-old man. I guess it is normal for someone receiving chemo, but in a way it's plain old freaky. I'm having a "shaving of Gabi-and-her-dad's heads party" on Friday. I've invited friends and family. It should be fun. However, at the rate that I'm shedding, who knows if I'll even need to shave my head.
