My life has been relatively cancer-free for the last nine months. I’ve been waiting for confirmation to write about this latest effort. During this time, my scalp has blossomed like a Chia Pet gone wild, which allows me to be closeted about my cancer identity while at college. It’s amazing how nearly no one at school knows about something that was such a large part of my life. Ironically, this past semester I took a writing course entitled “On Being Ill.” The class made me pick apart my cancer experience, chew on it and spit it out. All the while pretending to have no experience with the subject matter at all. Now, home for the holidays, my chemo-curls are twirling off in all directions. I got the “all-clear” from my oncologist, and have now embarked on my latest project. When I was sick, the Make-A-Wish Foundation offered me a wish. My wish was to help another cancer patient who could not afford treatment. The foundation found Micaela, a teenager living in Argentina, who is almost exactly my age. She has Hodgkin’s Lymphoma, the same diagnosis as my own. The only difference between our illnesses is that she can’t afford treatment.I want to help her. Please follow the link below to read more:
My high school friends Vashti and Sonia no longer have their luscious locks.In return, they have gained something that makes them even more beautiful—confidence. Vashti and Sonia were the first two girls to shave their heads for Shine On, a charity event for the Leukemia and Lymphoma Society in which students receive pledges for shaving their heads. I wanted to share Vashti and Sonia’s experiences, so I asked them each to write about what they went through.
Sonia’s Story:
“You just can't and that's all there is to it. Is that understood?”
“But Dad, why not?”
“I don’t need to give you any reasons... what do you think this is going to change anyway? You're not curing anyone's cancer by shaving your head. Don't be ludicrous ...this is your junior year and you need to stay focused on what's most important—"
“The purpose is to show her my support, Dad, that she isn't alone! WHY do you always have to be so cynical? Why can't you even LISTEN to me?”
The conversation ended a few short phrases later with me slamming my phone shut. Why couldn't my parents understand? This is something I felt so strongly about. My eyes clouded as I rushed back to my dorm room. I wanted Gabi to know how much she impacted me, how much her struggle and, most importantly, how she came out of it so strong, made me realize what really mattered to me. That was why I wanted to shave my head most. I just didn’t see why my parents couldn’t respect that.
But there were selfish motives for my wanting to shave my head, too. I had always had issues with my body. I thought I was ugly. So fat. Why couldn’t I be thin, slender? Why did my hair never seem to stay under control? Why couldn’t I be beautiful like the other girls at school and on TV? I never appreciated myself. It took me this experience for me to finally figure it all out. I wanted to prove to myself, that I like Gabi, didn’t need my hair to make me beautiful. That what I contained inside me overshadowed any outer-superficialities. I wanted to feel that my outer beauty did not define me. I wanted to prove to myself that I could be beautiful no matter how I looked.
And I never thought about it at the time, but I realize now that those motives were what really prompted me to chop the hair without my parents’ permission. You have to understand, this was a big step for me…the first real time I blatantly disobeyed them. I love my parents, I listen to them. But this was one thing I couldn’t stand being turned down for.
It was hard for me, going against my parents’ wishes. I cried several times, broke down. But my friend Vashti brought me up. She made it simple: “What will hurt you more, Sonia? Shaving your head and getting yelled at, even possibly getting hit by your parents? Or not shaving your head and feeling disappointed and angry and upset for not having done what you felt so passionate about?...But Sonia don’t let me make the decision for you. Don’t think about what anyone else wants for you, not me, not your parents, not Gabi, not anyone…think about what YOU want.”
So I thought about it.
And the rest is history.
My friends have reacted in different ways. Many have been supportive, “Wow, you and Vashti look so beautiful! I wish I had the guts to do that”. While some have been hesitant to even speak to me. It was hard at first. But I knew I had to accept that people would perceive this change in different ways. When my aunt saw my picture I just had to do ME and not worry about what others would think. I was doing what was making me content and that has fulfilled me most of all.
From this experience I am a changed person, and I know I will look back on it with pride because above all I have learned to define beauty in my own, original way. I love you Gabi. Thank you for being such an inspiration.
Vashti’s Story:
Life is truly filled with surprises, but nothing is a coincidence, at least I don’t think so. I did not know I would shave my head. But I do know that it was meant to happen.
I remember finding my friend Sonia after class, and we walked around together to the Student Union. “Vashti, I’m shaving my head today,” Sonia declared.
“Really?” It was so unexpected.
I told Sonia how I had been thinking about shaving my head, but that I couldn’t find the confidence or strength to do it even though I deeply wanted to do it. This had been running through my mind for months already. The moment Sonia began to speak of her pure desire to shave her head for Gabi, I saw the sparkle in her eyes.
At this instant I thought of Gabi Heller, yes a survivor, a fighter, a young woman just like me who unknowingly helped me pull through school and life as a whole. A superwoman who deflated my ego, and showed me life as it is… pure and beautiful… unfair yet completely perfect… chaotic yet utterly simple… hard but at the same time completely invincible.
This young woman who I have barely spent time with, but who I have come to feel a deep connection to, has changed my life. For the past months any time I complained about something, or did my prayers, or heard uplifting songs, or went to synagogue, I remembered Gabriella Heller. Although Gabriella Heller was probably at home or with friends and family, she was also with me, and I can still feel her positive and contagious energy with me right now.
At this instant I also thought of my Grandma Lola, yes a victim of breast cancer, but a hopeful and selfless woman and community activist. I remembered Grandma Lola’s colorful scarves from Venezuela and Israel. Her scarves had the Latin and Jewish flavors interwoven in the threads, just as those two flavors were interwoven in her DNA. She shared her roots with the world by always doing Mitzvahs and Buenas Caridades. If she were still alive, the day I shaved my head would’ve been her birthday.
I remembered my father, a colon cancer survivor. A soccer coach, a teacher, a motivator, yes this is my father who has shown me more about life than I could ever know… an imperfect yet amazing man.
I thought of all those people around me who struggle but say nothing, who have no shoulder to cry on, who have no arms, or legs, or who need transplants, or who just need hope, and those who can’t find a reason to live.
I thought of all the people with insecurities, and I remembered my own. Yup, I remember feeling like the only thing that truly defined my femininity was my hair. I remember being told in 7th grade that I was flat-chested and boyish. I remembered hiding behind my curls for so long… All these thoughts filled my mind as Sonia spoke to me. What I had thought of doing for so long finally made sense to me, there was no question about it, It was time..
“Sonia, yes you are so right..Sonia I’m in. I will join you on this amazing act, for this amazing cause.”
I called my dad, and he was so happy to hear this surprise. Next, I called my mom, and she said no matter what she thought I was going to do it either way, so why ask. I giggled because she was right. Lastly I asked my sister, and the first two things she said were, “Prom and Graduation!”
I am done caring about prom or graduation. I am done caring about pleasing any kind of societal norm. I am done with being a hypocrite, and saying how I want to do so many things, but I never actually do them. Yes I had the GabiHellerGrandmaLolaDadandSonia spirit inside of me, but most importantly I allowed my own spirit to speak, and I allowed myself to listen to my heart for once.
Sonia ran to class and I ran to our residence hall, “Sarah can you please shave my head and Sonia’s head today?” She replied with a confused yes, and asked why. When I told Sarah that we were doing this for Gabi Heller and all of the people out there who are battling or have battled through cancer, she agreed.
What made me the happiest about shaving my head is that my hair was exactly 10 inches long, so off to Locks of Love it would go. There have already been two amazing people willing to be my sponsors, which makes me so excited. So far all I have is joy. I love looking in the mirror because I remember why I did this.
Honestly all the stares I got this weekend at the store hurt me a bit because they weren’t the nicest, but at the same time I felt so unbeatable. Typically I would cry at the laughs of a group of boys at Aldi’s, or at the scared faces I got at Sam’s Club, but for some reason I felt proud. I felt proud to show my bald head.
That’s right I know why I did it, and I don’t regret it. Honestly all I did was one big haircut, and it was inspired by many people in my life. The real hero, amazing, and beautiful soul in this story is Gabriela Heller. She is the one who went all of first semester kicking cancer in the ass, Gabi is the fighter, the inspiration, and the winner. Without Gabi there would be no Shine On, and my whole outlook and senior year would have been completely different. So Gabi I want to thank you for sharing you experience with all of us. I want to thank you for being so sincere and so strong. I want to thank you for making the best out of your circumstance, and in turn helping those around you. I want to thank you for making me realize and recognize what life is all about, and what cancer is all about too. All I could say now is that I’ll be right there with you at graduation, and I can’t wait!!!!!
As my own stubbly scalp has been transmogrified into a rather furry surface, and as my tiny hairs sprout from their follicles, I have mused on the societal significance of the fine threadlike strands that flow from the scalps of many women. Females spend hundreds of dollars and hours of their time cutting, perming, coloring, curling, straightening, and coiffuring their manes. But why?It’s funny, really—hair is just filament growing out from our heads, right? Wrong. Or at least society says so.
Good morning, class. Today we will be discussing the historical and societal implications of women’s hair.
Women’s hair can indicate marital and financial status, and religious affiliations. It can be styled to display beauty and power or it can be shaved to humiliate. Aging women flock towards likely carcinogenic hair dyes to look younger, as hair is also symbolic of age and fertility. The stories of Rapunzel, Samson and Delilah, and Medusa all allude to the traditional and/or mystical power of hair. Shaving a one’s scalp was often used as punishment for prisoners of war, as punishment for women who were suspected of collaborating with German soldiers during World War Two, as a sign of servitude for the slaves in ancient Egypt. In terms of religion, Jewish, Muslim, and Amish women—
STOP! …Please stop! …I beg of you! Enough with the history lesson! I forgot to take my Senioritis pills this morning and—Oh, my…I think I’m getting a rash.
So, sure, while Rapunzel’s hair did allow her prince to save her, I don’t think anyone is planning on getting locked in a tower anytime soon. And besides, we live in a time where people are beginning to overcome stereotypes and rise above the “norm.” If a man wants to wear a 50’s sock hop skirt, bring on those poodles. If a certain Great Baldini enjoys wearing mismatching socks, why must she be constantly rebuked? If a woman wants more than one husband, why should she be denied her wish if both men consent? The same goes for bald women.
Sonia described to me her mother’s initial reaction. She told Sonia that her head looked terrible, that she should be ashamed to go out in public, and that people would always stare at her. Later that day, her mother started crying. Sonia asked her mother what was wrong, and her mother told her that she was upset that her daughter disobeyed her, but proud that her daughter stood up for something that she believed in.
People keep telling me that I am such a hero, that I am so brave, but I’m not. I didn’t choose to have cancer. I didn’t choose go through with chemotherapy. I didn’t choose to lose my hair. I didn’t rise above societal stereotypes, religious expectations, and my parents’ wishes for something I believed in. Vashti and Sonia were just two of nearly fifty IMSA students who shaved their heads for Shine On and collectively raised over $7000.These students are the true heroes and have shown me the meaning of bravery.
Today I was sitting in the common area of my residence hall, goofing off with some friends and procrastinating on homework. I happened to glance up from my computer and I saw something that I couldn’t believe. Standing before me was a strange, bald person with no eyebrows. His face strangely resembled that of an old man and obscurely reminded me of my own image mid-treatment. Only when he started talking and I heard his voice did I recognize this person as my beloved friend, Jamie.
Jamie, Dawna, and Matt are all co-founders of something called Shine On. The purpose of this event is to raise money and awareness about blood cancer through a multitude of school-wide events, culminating in head shaving. All money will be donated to the Leukemia and Lymphoma Society. Although the large head-shaving finale event is only occurring on the 26th of February, Jamie and other members of the swim team decided to shave their heads early for their final swim meet. So far, Shine On has received several pledges from students and teachers to shave their heads. Also they received a pledge from the cafeteria staff saying that if they receive at least $1,000 in donations, all nine of them will shave their heads.
Not being able to recognize Jamie brought back the frightening memories of not being able to recognize myself when I lost my hair, when I lost my eyebrows, when I lost weight, when my face was swollen from steroids or other treatment, or my eyes were hidden in deep, dark circles. To think that all of these people at my school are doing something so bold just to show that they care about those who are ill means the world to me. They say that actions speak louder than words. Well, right now the Illinois Mathematics and Science Academy is screaming at the top of its lungs.
Well, Toto, I have a feeling we’re not in Cancerland anymore. But to answer Anonymous’ question, I’ve entered this strange world called Reality. Here they have strange customs such as lunch lines, pop quizzes, alarm clocks, and damn revolving doors that my headscarves keep getting caught in. It’s hard to identify me as an outsider now that my eyebrows have sprouted back. The worst part is, my Cancer Card* keeps getting rejected.
*For those of you healthy people, the Cancer Card is not your ordinary piece of plastic. It’s the cancer patient’s “Get Out of Jail Free Card.” One can flash his or her cancer card any time he or she is bothered with petty obligations and nuisances. These include cleaning, cooking, deadlines, walking the dog, boring dinners, doing the laundry, and much, much more! Benefits include, but are not limited to: pity, sympathy, store discounts, endless attention, gifts, free food, get well soon cards. Please Note: The Cancer Card does not cure cancer. Additionally, the Cancer Card does not work in the hospital… it’s been flashed to them so many times that it’s lost its shine.
Can you believe that a teacher actually marked me late on an assignment? Who the hell does she think she is? Doesn’t she know that I have…
…oh wait. That’s right. I don’t have cancer anymore. I’m in remission.
While I love being back at school with my friends, I still haven’t gotten used to dealing with responsibility. I’m not suggesting that I want to go back to the way things were; I’m just going through an adjustment period. The plane ride from Cancerland to Reality is pretty long and turbulent, and I’m experiencing jetlag.
As for health updates, according to my nurse, my blood counts are “fabulous.”
Last week I met with representatives from the Make A Wish Foundation. It looks like they are going to do whatever they can to make my wish of saving a life into a reality.
In the end, though, while it’s hard to get back to reality, I guess I’d rather take a math test than another blood test.
“Shit! That hurt!” I yelled as the nurse jabbed a very thick and very long needle up my arm.
“Sorry we couldn’t access your port. We didn’t want to clog it up with contrast.”
I closed my eyes and was overcome with a warm sensation. The dye was working. The thin table that I was lying on automatically slid forward. When I opened my eyes, there were only six inches between my face and the walls of the scanner. This is it, I thought to myself. This test would determine whether or not my body was still infested with cancer. If this were the case, I would need radiation and perhaps more chemotherapy. I felt unprepared. This wasn’t the kind of test I could study for.
The table automatically slid back. “Hold your breath,” said a monotone female voice. My upper body steadily moved out of the mouth of the humungous donut. It was now scanning my pelvis.
The ring shape of the machine that surrounded my body reminded me of a folktale from my childhood:
King Solomon once requested that his most trusted minister fetch him a very special ring. “You see,” he said, “this ring has magical powers. If a happy man looks at it, he becomes sad, and if a sad man looks at it, he becomes happy." The king knew that no such thing existed, but he hoped to give his minister a sense of humility.
Spring and summer came and went, and still the minister had no idea where to find such a ring. One night, as he was walking through the poorest quarters of Jerusalem, he came across an old merchant who was laying out his goods on a shabby rug. "Have you by any chance heard of a magic ring that makes the happy wearer forget his joy and the broken-hearted wearer forget his sorrows?" The old man selected a fine gold ring from his collection and engraved something on it. Upon reading it, the minister smiled.
"Well, my friend," said Solomon, "have you found what I sent you after?" All the other ministers snickered and Solomon himself grinned.
"Here it is, your majesty!"
As Solomon read the inscription, the smile vanished from his face. The merchant had written three Hebrew letters on the gold band: gimel, zayin, and yud, which began the words "Gam zeh ya'avor" -- "This too shall pass."
My scans came back negative, and I am now officially in remission. I wish I had remembered this tale much earlier in my journey, through all of my pain, tears, mucositis, infections, neutropenia, fainting, fatigue, transfusions, bruising, bleeding, loneliness, and fear because this too did pass. I’m over this bump and moving forward on this winding road we call life. On Sunday, I’m returning to school, I’ve been accepted to a college, and eating no longer hurts. Now, if only someone would tell my nose hairs to get their furry asses back into my nostrils, my life would be much more pleasant.
I am thankful for how much this cancer transformed my family. My younger brother has practically become my older one, as he is constantly looking out for me and reminding me to take my meds; my father has transformed from a virtual workaholic to overly protective nurse, caretaker, and friend; and my mother has always been with me for every blood draw, procedure, and emergency room visit, always bringing with a supply of food to meet my special dietary needs. I am thankful for learning the definition of true friends: the ones who ditch school to accompany me to the hospital, the ones who go out of their way to pay me surprise visits, the ones who join me on long walks in the Botanic Gardens, and the ones who make me delicious muffins, gheimeh, mandel bread, plum tart, pumpkin bread, and soup. I am thankful to all of the wonderful doctors, nurses, and hospital staff who took such wonderful care of me. I am also thankful to my aunt Tania, who was particularly instrumental in my diagnosis. Lastly, I would like to thank you, dear readers, for sticking with me for so long.
Soon after being afflicted with this disease, I realized that I was fortunate to be receiving the great healthcare that I received. With the knowledge that not every child battling Hodgkin’s Lymphoma is as fortunate as I am, I wanted to make a difference. Approximately six weeks ago, I was granted a wish by the Make a Wish Foundation (http://www.wish.org/). My wish was to save a life. Currently, I am waiting to hear back from them as to if and how they can help me accomplish my wish, and I hope to report back to you in the near future. Perhaps this blog will continue with a second life, dedicated to that worthy cause.
The great Persian poet Rumi once said, “What strikes the oyster shell does not damage the pearl.” My bald head and spirit are shining with all their might. Now that I am this much closer to a full recovery, I must always remember never to take my health for granted. Gam zeh ya'avor.
"The night is darkest just before the dawn. And I promise you, the dawn is coming." Well, Harvey Dent, I hope you were talking to me. I can't eat. I can't drink. I have a fever and mucositis, and I'm also neutropenic (My white blood count is less than 0.1 K/ld. A healthy person's white blood count is normally 4.3 - 10.8 K/ld). I'm in the hospital, currently receiving 3 blood transfusions. This morning I was unable to sit up without getting dizzy, and I had to be pushed from our car to the hospital in a wheel chair. I'll be here for at least a night, having a party with my spit sucker suction wand and IV pump. The only way I am able to grit my teeth and endure the pain is by telling myself that this is the last one. The end. Finito. Period!
Not to long ago, Lexi, the Child Life Specialist here at Comer Children's hospital, came into my room to give me beads. I am participating in a program called Beads of Courage. For each procedure, for example, a blood transfusion, a PET scan, an emergency room visit, etc. I get bead.These beads are one of my most prized possessions. They represent a timeline of what I've been through.As of today, I have 147 total. Altogether, my string of beads is four feet and three inches in length.
I've never looked this terrible in all of my life. I resemble a dying old man. My eyes seem to have sunken in another inch into my skull and I'm pale as a pair of tighty-whities. I have no trace left of eyebrows or eyelashes. Not being able to recognize myself physically, has strengthened my inner self. I know that sounds incredibly cheesy but nonetheless, it is true. While I'm not one of those people who claims that their cancer was a "gift," it certainly has changed me for the better. Each obstacle has shown me that maybe Nietzsche did know what he was talking about when he said: "What does not kill me makes me stronger." One of the most troubling choices that I almost had to make involved a potential choice between trying to preserve my potential ability to have children versus reducing the risk of my cancer spreading from a Stage III to a Stage IV. Stage IV Hodgkin's lymphoma affects not only the lymph nodes but also other parts of one's body, such as the liver or bones. But having my own kids was something I’d always dreamt of. It was like having a door slammed in my face. How could I possibly decide? Well in the end, I did. I chose against preserving my fertility, because who knew if I would even survive to be able to have kids. Turns out, the choice was for naught, for I was able to get a shot that shut down my ovaries, thus protecting my fertility and my health. But even if it hadn't worked out this way, I was still presented with the option, and making the choice truly tested me.
Secondly, I now carry a certain air of confidence; after all, I've pretty much kicked cancer's ass. What is there to be afraid of? Whoever you are, bring it on. I've got my rainbow slippers as boxing mitts and my pain meds in my back pocket. You don't stand a chance. As a way of flaunting this new found confidence, on Tuesday I went to my old middle school to give my very first and second presentations about cancer and optimism. It didn't exactly go as well as I had hoped. I was devastated when my Powerpoint wouldn't work and when in the middle of my presentation, I felt very faint, and needed to sit down. In the end, I was able to show my pictures and video, and apparently one of the kids commented (after I had left) that he found it inspirational that I kept going despite my not feeling well.
I've also learned the value of a support system. Overcoming cancer is not a one-woman act. My family, my friends, my doctors, my nurses, my "blog friends," and complete strangers are all responsible for my health and happiness. They've taught me to ask myself: "Why turn lemons into lemonade when you can hollow them out and make them into whoopie cushions?"
Before I go making this post into an even sappier farewell-like letter, I need to remind myself that I still have a few weeks to go before Destiny's Child's "I'm a Survivor" plays as I walk and my headscarf trails behind me in the wind. ‘Till then!
I'm eating raspberries right now and I just realized that they have more hair than I do. This greatly upsets me. I like putting them on my fingers to make puppets and watching them fight to the death. Then I bite their heads off.
I go in to the hospital tomorrow at the top of the sixth. Baldini-5. Lym Hodkin-0. This inning is looking pretty ugly; the lineup is Vincristine, Adriamycin, Zinecard, and Cytoxan.
Who would have ever thought that four weeks from now, in all likelihood I will be crossing the threshold from patient to survivor. (And the crowd goes WILD!) I believe it’s only a matter of time…
My old friend Mucositis is back for an uninvited visit and this time he brought along his good old buddy Neutropenia. I’ve been begging Muco to get the hell away from me but he finds wicked pleasure in my suffering. It feels like he took a cheese grater to my throat, preventing me swallowing anything other than tea or soup, and even those two things cause me great discomfort. I cringe in pain whenever I swallow my own spit, so I’ve resorted to carrying a spit bowl. On Friday my mom went to a great deal of trouble organizing a dinner party the night before my grandmother, Rosie, was due to return to London. That morning I had gone out and nearly fainted several times. Each time, I started to lose my vision as everything went white and I was forced to quickly sit down. By the time I got home, my dad had already contacted my oncologist who ordered me report to the Highland Park emergency room for a probable blood transfusion. We got there at noon, naively assuming that we would be there for a mere three hours. Ha! How wrong we were, for we forgot that we were on hospital time. To my sheer delight, my good friend Tim was my nurse again.
We first had to get my blood typed, even though I’ve received a transfusion in the past at this hospital, which took a good three hours. I was then transferred out of the emergency room to a regular room. Two hours later, they began the transfusion. Needless to say, my mom was constantly calculating whether or not I would be able to attend her dinner party. I needed one super pack of platelets, which took about an hour to transfuse, and two packs of red blood cells which each took three and a half hours. We thought we would be home by 3:30 on Friday afternoon at the latest. Turns out we got home at 3:45 the next morning. Sorry, Mom.
The next day, I was full of energy, and against my dad’s better judgment, I, along with three friends, abducted my roommate, Dawna, and took her on a pirate scavenger hunt for her birthday. Aye, did we have a jolly good time.
By the time I got home at 7:00pm on Saturday I needed to take a rest. When my dad got home, he took my temperature, and lo and behold, I had a fever. Now, I know that normally a fever is no big deal, but when my number of white blood cells is the same as the number of hairs on my head, it is a serious matter. So, yet again we were off to the Highland Park emergency room where they took blood and urine cultures. I was given an intravenous antibiotic and sent home with my port accessed and oral antibiotics. Yummy!
Now I am at home, currently on an IV with my spit bowl in one hand and my painkillers in the other. I’m trying to stay out of the hospital as long as possible before my next round of chemo, but it doesn’t look like the evil Muco is giving in any time soon.
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.
“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!
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. ;)
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.
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!
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.
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.
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.
