For Anyone Who's Ever Wanted To Know: March 10th, 2004
About 2 weeks after I was diagnosed. That's my mohawk, and yes that's me smiling.
Every year around this time I always get REALLY excited, overwhelmed with a fuzzy feeling of excitement that starts on the first day of March. It builds with each day that comes closer to today, March 10th, a day that it doesn’t matter what is going on. I’m always really happy because quite simply, I am alive.
It was around this time back in 2004 that even in the days leading up to the diagnosis were pains and personal humiliation that I had never experienced in my life. I felt like I should finally put it out there what exactly happened. Over the years after every time I’ve said I had cancer there are people who eventually feel comfortable enough to ask how I found out. It’s not something that makes me uncomfortable but it’s a rather long story that I simply sum up in a few words. It keeps the sympathy low and time saved. I haven’t really sat down to write it and reflect on it before. I relive it quiet often around this time but never really share it, to be quiet frank I was on the verge in a matter of a week or two of not making it. However, if I’m doing an entire project where I want others to open up about their battles with cancer, I figure I should do the same. Not because I want sympathy or think I’m some grand role model as a poster child for surviving cancer (it’s something I somewhat loathe) but because I think people need to understand cancer better, maybe even me. Not only that it’s my anniversary and I want you all to understand, after you read all of this, why despite the terribleness of what I went through why I celebrate this day as opposed to the day I finished.
The story of the excitement I feel today began like this…
I guess the symptoms I remember can be traced back to around the beginning of Feb. that year when my period started. It was a noticeably heavier one, but there wasn’t much I thought about it. I was 14 and had only been having them for about a year. Well with that said, it was also around this time that I came down with what looked like strep throat because my glands were incredibly swollen and hurt to swallow anything. I remember this because it was Valentines weekend and I had a boyfriend at the time who I wanted to go to the movies with and my Dad said no because I was sick. In attempts to try prove him wrong I said, “No see look dad I’m fine”. Proceeded to eat and swallow a Hershey’s chocolate kiss only to be forced into making the face of someone who might have just put a sour head candy in their mouth. He laughed and said, “Riiight”. Then mocked the facial expression I made.
We went to the doctor to see if I had strep and they concluded after the tests that it wasn’t strep just simply a sinus infection. I was given pills to take and a few days later the pain had stopped. My glands were still swollen but it no longer hurt so I didn’t really pay attention to the other part and figured it would go away soon.
Fast forward the rest of the month, my period was still there only spotting, which isn’t really that big of a deal for most girls. It lasted all the way through my Dad’s wedding, the week I spent at my friends house while he was on his honey moon, up until my period was due to start again. And boy did it start again. I remember when it started going to the super market with my dad and picking up super jumbo sized tampons and saying to my Dad, “Yea I learned my lesson last time.”
Well to give any sort of a clue as to how bad things were about to become in the next week, I went through the box of twenty of those in about three days.
As things progressed that week, I was losing more and more blood. It was a mess really. I was diagnosed on a Wed and things started to get noticeably worse the Thursday of the previous week. I was having to get up about every two hours. With each passing day it got worse. I don’t remember much up until that Sunday when I had to miss church because of “the mess” that was starting to happen (we have yet to go to church every Sunday as a routine since I was diagnosed). I remember this because I had been sitting on the couch with my Dad and Denise (my step-mother) discussing my period. It had become a topic of discussion in my family, as I discussed with my step-mom just recently she thought it was strange to be missing church because of a period. Well then my Dad explained that I couldn’t really get off the couch and I was getting light-headed .
Here’s the thing, I was a 14 yr old girl being raised by mostly my father, he didn’t know what was normal or not from this.
All in the meanwhile my stepmom behind my back had urged my Dad to send me to a Doctor, that none of this was normal for periods and even so that I was losing a lot of blood and that needed to be taken care of. My step-mom was talking to me on the phone that night (they hadn’t even moved in together yet because they were still waiting for word back on the house they wanted to buy) and said that I was weak because I was anemic and needed iron. I had just ended basketball season so I wasn’t used to not exercising everyday anymore. That I needed to start taking one-a-day multi-vitamins to get more iron. I’m not sure how I got the advice of exercising because that wasn’t what she told me from this discussion but somehow I got into my head that exercise would be a good idea.
OK, I’ll follow this advice maybe it will get better, so I went down to the basement and ran back and forth a few times. Dear GOD was that a horrible idea. All of the sudden after a running back and forth twice, my heart began beating really fast. My heart felt like it was about to explode out of my chest and became light headed as I went upstairs. I went to the bathroom because I felt like I was going to puke. As soon as I got to the bathroom the light headedness turned to dizziness and I started to fall into the wall of the bathroom, I put my hands against the wall to stop myself and then my knees gave out and I fell to the floor. I started to sob helplessly. I was so frustrated, I slammed the floor and said out loud to myself through sobs, “What the hell is wrong with me?”
I’m sure you guys are all wondering, why I hadn’t gone to the doctor by then or at least the ER. You know why, because I was 14 and no one but me knew how I was feeling. Furthermore, things surely couldn’t have been as bad as they really were, I was just being dramatic. I would get these certain episodes, and then I’d be fine. See because as long as I would rest or sit down for the most part I was fine. And since little movements caused undesired messes, I stayed seated for the most part. We are trained as teenagers to think we’re dramatic, and we train ourselves to believe that we’re invincible. I had missed school several times in middle school, I think my first year of 8th grade I racked up about 15 days from being “sick”. However, 75% of the time I was faking it because I dreaded going to school. I really had no idea what was going on either because this was due to a period. I had only been having them a year, and surely I couldn’t be that sick from just a period I thought. I knew I was losing a lot of blood but I didn’t know the amount of blood that I was losing was putting my life in danger.
I was right on one count, I wasn’t sick because of my period. My period and the bleeding was just the side effect of what unknowingly at the time the process of immature white blood cells growing uncontrollably in my blood crowding the room for the red blood cells that carry oxygen to have the ability to produce. At least it’s something like that, I’m not a medical professional, just know there weren’t enough red blood cells and way too many white blood cells. But we’ll get to that in a minute.
I remember the first day I stayed home from school on that Monday. I was sleeping on the couch until noon. I hadn’t been doing much moving and was SO EXHAUSTED at that point. Nonetheless, I was hungry and I was a big fan of egg salad sandwiches and decided I needed to eat something, so I got up put the water in the pan and to save me a trip put the eggs in the water before it started to boil. I then laid back down to wait for them to boil, as soon as I closed my eyes I passed out for another hour and woke up to the sound of water over-boiling. SHIT! I got up quickly and took the eggs off the pan. The eggs were still good so I then went to grab the stuff to make it. I remember I was feeling light-headed as I walked around the kitchen to get the ingredients to make the salad. I grabbed them and brought them with me to the couch and put them on the coffee table in front of the couch so as I made it I could sit down. The process of grabbing the miracle whip and adding it to the cut eggs, adding the paprika and salt and pepper and stirring it all up caused me to feel so weak that I started to cry. I was starting to feel desperate. I got up and because I realized standing was too much, I crawled to my room (which wasn’t too far away because at the time we lived in a ranch house), and grasped for the phone that was on the floor. I picked it up and dialed my Dads work number. I just started to cry and plea.
“Dad, please just get me a doctor’s appointment. I need to see a doctor, there’s something wrong with me:”
You could hear the sympathy in his voice at this point, “Alright, I’ll try to get you one as soon as possible.”
He called the doctor and explained what was going on; the next available time that Dr. Abrams my pediatrician/gynecologist was scheduled to be in was that Wednesday. I found out recently as I’ve tried to collect information about what exactly happened, that my step-mother was worried that we were even going to be waiting until Wednesday because of the rate at which I was losing blood.
I retreated to the couch imagining what they were going to say at the doctor’s appointment. I imagined myself in a hospital gown being feeble and using a walker to get around. Ha, but that was crazy talk, I wasn’t THAT sick. Normal people like me didn’t get that sick. Only people on T.V. in those cheesy lifetime movies get that sick. I knew absolutely nothing about cancer, about blood disorders, about ANYTHING really that could be wrong. I just knew I felt like shit. As I write all of these things now with perspective, I wonder to myself why I didn’t go to the doctor sooner, but as your going through something like that, the actual process, you really don’t put the pieces together on the whole picture of things. Things don’t become 20/20 until after you can look at it as a whole.
Then in the middle of the night I awoke to lying in an entire couch cushion soaked in my own blood. How humiliating I thought to myself, I quickly got up and grabbed paper towels and dampened them a little to clean it up, dabbing at it until it all was eventually gone. The next day my Dad looked in the trash and saw the paper towels because I told him what happened. He noticed that the blood was a funny color but he wasn’t sure if it was pink because it had been deluded but he also didn’t see the actual mess. He had no idea how much there was, and I’m pretty sure since he’s a boy I’m sure he wasn’t exactly comfortable with asking how much. I think because he didn’t see it and it was so easily removed from the couch though that it probably wasn’t that bad, because blood does not easily clean itself normally from fabric.
Wednesday morning came by and the bleeding from my period had subsided considerably, at least from memory. It all varied by the hour of the day really and we went to the doctor before noon. I thought maybe today I was going to get to go back to school and all of this nonsense would end. However, something new was wrong, as soon as I even so much as sat up my heart began to beat really fast. I wasn’t even moving, just sitting up. Had to of been going at least 150 beats a minute. I went to my dad and asked him what he thought. It was much like anything else that had started to become weird ever since my period started to get noticeably out of whack. I ran to my dad to ask him what he thought.
“Dad, feel my pulse, my hearts beating REALLY fast”.
His face became perplexed. “Hmm.”
These were all faces he kept making ever since I noticed other things wrong, things that were “different”. I started to notice when I looked in the mirror that my glands were still swollen from what doctors told me a month before was just a sinus infection.
“Dad, do my glands look swollen to you?”
“Hmmm, a little, yea’.
My face also seemed to me to look somewhat paler; I got a second opinion from my Dad again.
“Dad, does my skin look a little funny to you?”
“Hmm, a little yea”.
I can’t remember his reaction at the time but he’s told me that I looked really sick. And that I looked incredibly pale. Nonetheless I asked him if I would be OK to go to school, because my period in the morning was better.
“Ahhh, well I mean you’ve already got the Doctors appointment scheduled, why don’t you just stay home and we’ll get this sorted out then,” he said.
“Alright”.
To the doctor we went, I was actually kind of excited to go, because I wanted to get better. I felt relatively OK again, but still was happy to finally get to a doctor. I was hoping though that I wasn’t in my head being dramatic, no one likes to hear that they were over reacting. I however, was not excited when we got there and had to wait 40 minutes to be seen. Finally my name was called and we went back to have the normal prep work procedures done. They took my temperature first, it read a 100 degrees. That was odd I thought, but then again after everything that was going wrong it didn’t really shock me. Then they gave me a finger print, the most painful finger print of my life mind you. When you prick someone’s finger the blood is suppose to come out no problem. It’s thick and dark red, with a few short squeezes usually getting the job done for the samples they need.
The nurses took my finger. SQUEEZE. She was putting quite a bit of pressure behind it. There was slight drop. SQUEEZZ. Another slight drop. “Whew,” she said examining the blood. It was weird red color and rather thin. She squeezed again, this time putting her body behind it. She got a few more drops and she was done. Thank god. She examined the blood before she left and gave a concerned look, I thought nothing of it, and then left.
“Doctor Abrams will be with you in just a minute,” she said before she left.
Sure enough Dr. Abrams came in not long after. My dad left the room and she gave me the standard feet in the stirrups exam that you get. This was my first experience with a gynecology visit and well it was about as awkward as you’d imagine for a 14 yr old. She was soon finished and I don’t really remember what she said. I just remember as I sat up she noticed these huge bruises were on my knees and other tiny bruises scattered up and down my legs. She asked what they were from, I presumed basketball.
“Does it hurt when I touch them,” she asked.
“No, not really,” I responded.
“Hmm.”
She began to run her finger along my leg. From experience I now know she was looking at marks on my legs that are known as patechiae, and touching the marks to see if she felt any bumps. It’s usually flat to the touch, pinpoint, round spots that appear on the skin as a result of bleeding under the skin. According research I’m doing on this (while Wikipedia is not official, it will do for facebook), “While not always serious, they are however the hallmark sign of other potentially serious illnesses including leukemia”.
Poor thing, looking back on it she was trying her best not to panic, she wasn’t sure but I know she was already suspecting Leukemia. She had me get dressed, then came back in and did the other normal procedures such as check my breathing, shine the flashlight in my eyes and in the back of my mouth, and lay down and feel my stomach. She noticed the same thing I had earlier, that my glands were still swollen then felt my glands. I know the next thing she did, now that I know its procedure, was to feel my stomach, more particularly my spleen to know that it was enlarged. According to Livestrong.com, “People with leukemia have an overproduction of abnormal white blood cells. The spleen must filter and collect these excessive numbers of cancerous cells. This causes it to enlarge.”
My dad was brought back into the room and Dr. Abrams said she’d be back shortly. And by shortly she meant and hour later. First thing she said upon return was that I was anemic and lacked iron like Denise had said and that was why I was feeling so tired. The next thing was that my white blood cell count was too high for the machines there to count, that the machines there only counted up to 60,000 white blood cells. She started speaking rather fast now, letting us know that it could possibly be mono. The poor thing had no idea how to break it to us what she really though it was. She continued to say that I needed to get to the hospital as soon as possible to get a blood transfusion and that I was facing a number of things that could happen, including passing out in school and potentially hurting myself. She had called Dr. Raj, a doctor at Kosair Children’s Hospital (she failed to mention on purpose that his specialty was pediatric oncology), and they had scheduled a work up of some sort and got me a room scheduled and that she would come tomorrow morning to check on me (also not something a doctor would do for mono).
Just recently my Dad admitted that he didn’t really start to worry until he had heard that my white blood cell count was too high for the machines to count. He said he spent the half hour drive up to Kosair convincing himself that it wasn’t Leukemia.
Hospital? Well at least I wasn’t over reacting about how sick I had felt, and mono seemed like a reasonable thing to me since I had known someone not too long ago at school who had said they had mono. I had never been to a hospital in my entire life, not even a broken bone, so when we got there and the nurse directing us to the “express waiting room” had asked if we had brought luggage me and my Dad looked at each other confused. “Well sometimes patients bring luggage with them,” she explained. “No we just found out that we were supposed to come,” my Dad said. I think she asked this though because she saw I was waiting to be directed to a room on 7 West, the peds onocology unit. Now, being less naïve getting an express waiting room in a hospital is NOT a good sign and should raise several red flags. I personally at the time was just happy that I was getting a bed and cable TV to watch while I was waiting.
As we waited over the next few hours we made several phone calls, including to both of my sisters and to my step mother who had just gotten back from making the down payment on the house her and my Dad were buying together. I left a message on our home answering machine, “Hey Haley, we’re at the hospital right now, Candy’s going to come by and pick you up.” Candy and Haley are both my older sisters. In the meantime before everyone showed up, Julie, my angelic sweet resident doctor had showed up to give me the lowdown as to what we were going to do. She immediately struck me as cool because my chuck taylor shoes at the time which were completely covered in different colored markers laughed and said, “Ha, I used to do that when I was your age”. I remember she had said I was going to get a blood transfusion and making a joke as I grabbed my arm saying I was a Jehovah Witness and didn’t believe in getting blood transfusions because needles still scared me back then. But first they would need to draw my blood again. Thus they did, and Julie came back with the results that my blood cell count was 120,000.
I didn't know it at the time but that’s bad, really, really bad. Your normal blood cell count should be between 8,000 and 12,000 at the MOST. At the most, It was still 12x higher than what it should’ve been. It had only been Julies first week working on 7 West. She told me months later after coming to visit me when she was no longer my resident that when she read the charts it was the first time she saw it and thought, “Oh my God, this is real”.
When Haley got there she said, “Yea, you’re never allowed to leave an answering machine message like that ever again, I thought something had happened to Grandpa”. Haley, who’s only one year older than me, had no clue that I was as sick as I was either.
“Oh come on, you’re not that sick. Look sees, your fine,” Haley said. She wasn’t trying to be insensitive but unless you were paying attention to the color of my skin, I didn’t look that bad I don’t think. I was sitting up for a while and laughing and talking.
However, not long after she came in every time I sat up I started to get the chills and felt immediately warm as soon as I had lain down again. My other sister Candace was not as optimistic. I went to the restroom and I remember coming back in to hear her saying to my Dad that blood cell counts of 120,000 were bad. Not something he didn’t already know. I also remember Denise finally getting there after she had already visited where my room was scheduled to be, rm. 737. In the halls she had seen a sign that had said End of Chemo party and then coming down and talking about that.
All of the details became fuzzy up until I met Dr. Raj, one the pediatric oncology doctors of Kosair Children’s Hospital. He took my parents out the room and I don’t remember if Haley and Candy were asked to leave at the same time or before. I just know that the next thing I remember was everyone coming back in the room slowly. Denise was wiping her eyes; my Dad was sad, Dr.Raj very serious and somber, and Julie’s eyes red from crying continually after she saw my blood cell count.
I was watching TV and it was interrupted for this speech and I thought everyone was being a tad dramatic themselves. I was in the hospital but come on. I know of all the things you’ve heard I should’ve been scared but after each bad episode and symptom that I’ve told you about, I was actually beginning to feel better that night, minus the cold chills from every time I sat up. My Dad came over to the bed I was laying on and started to hold my head as Dr. Raj started speaking. He was using all of these really big words and I gave up on trying to keep up. I started to try and pay attention to what was on TV, it was Kings of Queens, and then I noticed in the background the words, cancer of the blood, my ears perked up at this point. I still hadn’t made the connection that this is what I had; he continued on with his big fancy medical terminology and then finally ended his speech with a pause and short sigh and said, “It looks like Leukemia”.
With one giant gasp, I looked up at my Dad in absolute disbelief and terror, Leukemia. It was word that held an entirely different meaning in my family, I had no idea what the fuck leukemia was, all I’d ever heard about leukemia was that it killed my fathers sister when he was a kid. I didn’t even know it was cancer.
“Dad,” I said through a cracked voice. He knew what was going through my head.
“I know,” he said as he slowly nodded his head. I could see the red in his eyes as he was doing his best not to break down too. I looked away and in a matter of seconds all the images in my head of what the funeral was like. The things I heard about my grandmother and the breakdown she had when she threw herself on her coffin as she was about to be buried. The looks I had imagined on my father and aunts and uncles, the absolute sadness of it all.
I looked away shaking my head, and through a raspy voice said, “I don’t want to die”. My life didn’t flash before my eyes, all of the things in life it was possible for me to do did. Then all of the sudden blackness came over these thoughts, as if a time line was being cut off. All I could think was, holy shit I could literally die. I didn’t think that I was going to for sure but I just knew that it was the reality of what was possible.
Dr. Raj, I guess sympathizing with my fear said, “Now, it may not be leukemia, we’ll have to do further testing but as of right now it looks like leukemia”.
There was a joke one time that I remember seeing on scrubs when John was supposed to tell the patient bad news. Then because he panicked gave him some possible hope, despite that it would be on some magical medical marvel that it was going to be different. And as he came out of the patients room Bob is standing there very stern and telling him that he did wrong. He said you see how happy that patient is now, you tell one little good thing and they hold onto. It’s very true; when he said this I was relieved to some extent. You know bad things happen to people but you never believe they could happen to you. At least teenagers don’t because we train ourselves at that age we are invincible. That little relief made a difference for the first couple of nights though.
The door opened and my sisters were finally let in the room. My step-mother Denise through tears said, “Paige has leukemia”. Everything went in slow motion from there, my sisters both just burst into tears and they all clung to each other as my Dad stayed by my bedside. I got antsy and thought, wait he said there’s a possibility it’s not leukemia. Don’t say it as if its’ true yet, we don’t know for sure yet I thought. However, the reality was that I had every single hallmark sign that it was leukemia and that they had move fast to fix what was wrong. 120, 000 white blood cell count is bad, very bad. Actually it used to be back in the day that anything over 100, 000 was considered terminal. And when I was diagnosed they gave my about a 40% chance of making it, it changed after 2 weeks when the chemo started working but at that moment I had a 40% chance.
I was still clinging onto that hope though. I was about to be prepped for surgery to insert what’s called an apheresis catheter in a large vein in my groin area. This was what was going to allow for the procedure over the next 5-8 hours that would be removing all of the white blood cells from my body and injecting me with healthy red blood cells to replace all the ones I had lost.
Before the surgery another doctor arrived at the door, Dr. Cheerva, who showed up with a wheelchair and I’m not sure if she actually physically pushed my wheel chair because I don’t think I’ve ever seen a doctor do that, but I do remember getting a tour of 7 West and her telling me all about it and showing me the teen room. It wasn’t long after I got to my room that I was being wheeled out on bed to be taken to the surgery floor.
I woke up around 3am after the surgery to my step-mother at my bedside holding my hand in a hospital room and to my right my Dad passed out on the guest bed.
Well shit, this wasn’t a dream, awesome.
I sat up and was greeted by two nurses who were working on the procedure that was being done. One was a very enthusiastic blond woman who introduced herself. She introduced me to Debbie, the other woman who was next to her. I don’t remember how I got from being really upset about being in a hospital to laughing my ass off. Tracy had a knack for making you laugh in just about any situation and willing to do just about anything to get a kid to laugh, that was how she got her nickname “Crazy Tracy”. Somehow we all were laughing about the silliest things; I have no idea what about or anything. That’s the thing about the nurses of 7 West; they’re sensitive, sincere, and funny. They don’t treat you differently because you have cancer, they’ve seen it all and if they stick around long enough they know you’re not different.
Dr. Abrams showed up around 10 or 11 am. She slowly crept into my room fearing that I was going to be mad at her. I just looked her and saw that intimidation she had and said, “Welp, good news is its not mono, bad news its cancer”. She was still very slow with what she said. “Yeeea. Bad news is its cancer. Paige I’m sorry I didn’t tell you yesterday. I just didn’t want to say anything until I was sure.” I wasn’t mad at all, I was pretty thankful she said didn’t.
Over the next few days the phone calls were made to let friends and extended family and the school know what was going on. I told people I had leukemia but I didn’t really know of anything else that was going on, still hadn’t really sunk in what I was about to go through. I remember a specific night when I asked Denise, “If I really do have leukemia, is it full blown, like is there a chance we caught it early at all”. I had been telling people I had it, but I still wasn’t a 100% sure that this was real.
“Well first of all Paige, you do have leukemia. Second, we don’t know everything yet so we’re just going to take this one day at a time,” she said.
It wasn’t too long after that I remember in the middle of the night during the first or second week that I started to go over in my head who I had known that had cancer. I remembered my neighbor Josh who I used to play basketball with in his backyard every day talking about the neighbor who lived on the other side of my house. She had passed away the year before, “Man she was the coolest old lady. I remember one time my ball rolling out into the middle of the court while she was getting her mail and saying, “How do you like it, an old lady with a mohawk””. In reference to patches of hair she had lose resembling a mohawk. It was in that memory Josh had provided me that had fueled me in what attitude I eventually brought to cancer. I thought fuck it; if I go down I want the same thing to be said about me. I wanted people to be able to say that I was cool. I wanted people to have funny memories. From that story I also got the idea to shave my hair into a mohawk. If I was going to lose it anyway, why not right? I had originally planned to keep it for a day as a joke, but the reaction it got and the jaw drops that came from my nurses and doctors were too priceless not to keep it up.
My family kept asking me, “Are you sure? I mean there’s people who go through chemo who don’t lose their hair, you don’t if you will or not.” Yes I was sure. I shaved it even before my hair had the chance to start falling out, if I didn’t get to have a say in having to do chemo, I was going to control what I could. I was going to shave it and beat cancer to the point. I was NOT going to be one of those sad kids in the commercials. I was going to be a stubborn hard ass about it. I wasn’t some happy go lucky kid; I was already an angry kid who came from a turbulent childhood filled with abuse and neglect from my birth mother. It had only been a couple of years since custody was taken away from her and granted to my father. At 14 I was stealing my father’s cigarettes, smoked weed on school property and sneaking into his liquor cabinet (it all tasted disgusting at the time but doing something I was told not to was my M.O.).
It’s probably where the attitude came from, I was a pissed off kid to begin with. It helped though through it all though, with all the defiance I held towards authority, I had a defiance to never ever let cancer make me feel weak too. Cancer was not going to tell me how to live my life. Fuck cancer. Eventually after faking being brave and facing things head on, you get used to them. It's like ripping a band aid off in one swift motion instead of doing it slowly. It stings for a moment but then it’s over. And as that attitude came about the less I thought about death, I was going to fucking fight. Bring it on.
I think that’s also why I hated watching the St. Jude commercials, they were sad. I wasn’t going to be sad about having cancer, or at least not let anyone see this. Lance Armstrong wrote about in his book that the irony of cancer is that as a patient you’d think that it would be others who’d have to tell you that you’re going to be fine. However, that in a lot of cases, it’s the patient who tries to make sure everyone else around them doesn’t worry. In the beginning I remember my dad’s co workers came in and were enthusiastic and said they wanted me to get better, that they wanted to see him come to work happy. Ouch. He just shook his head yes and I saw him literally fighting not to cry, because not being happy meant the worst. I just looked at him as I saw this and said sympathetically, “Dad, I’m going to be fine”. I didn’t know what was going to happen but I knew that he needed to hear that.
However, don’t get this twisted when I say get used to, this is simply referring to the ability to endure. Cancer is pretty much as bad as you’d expect. I practically lived in Kosair, every time I went to the hospital for chemo I was there for at least a month, which is exhausting. There were painful procedures and sometimes nausea that got so bad that every time I sat up or ate anything I’d puke; sometimes 2 or 3 times a day. I sometimes went weeks only eating saltine crackers and ginger ale. And even when I was home I was constantly going to the doctor about every other week and having to receive platelets or blood. I had a giant tube sticking out of my chest and had to take all kinds of measures to make sure it didn’t get wet when I took a bath which is SO ANNOYING.
Not only that, you’re visibly sick to everyone around you and as a teenager that was something that was hard to get used too at first. While I was used to being bald, that didn’t mean everyone else was. That look of discomfort that comes across people’s faces, it hurts. I will never forget the first time I decided to leave 7 West for a scan that was on the first floor without my bandanna. I was being strolled past the E.R. where there was a row of parents waiting. There I was; completely bald, a green mask covering everything except my eyes with white hospital blankets keeping myself warm looking like something in a sad lifetime movie. I remember the first man on the end saw me and crossed his arm, turned his head and looked away. I started to try and make eye contact with them, I wasn't "staring" but I was looking them in the eye, much like you do when your passing someone in a hallway. Usually you offer a smile right? Every single one of them literally turned their heads and looked the opposite direction.
The story of the excitement I feel today began like this…
I guess the symptoms I remember can be traced back to around the beginning of Feb. that year when my period started. It was a noticeably heavier one, but there wasn’t much I thought about it. I was 14 and had only been having them for about a year. Well with that said, it was also around this time that I came down with what looked like strep throat because my glands were incredibly swollen and hurt to swallow anything. I remember this because it was Valentines weekend and I had a boyfriend at the time who I wanted to go to the movies with and my Dad said no because I was sick. In attempts to try prove him wrong I said, “No see look dad I’m fine”. Proceeded to eat and swallow a Hershey’s chocolate kiss only to be forced into making the face of someone who might have just put a sour head candy in their mouth. He laughed and said, “Riiight”. Then mocked the facial expression I made.
We went to the doctor to see if I had strep and they concluded after the tests that it wasn’t strep just simply a sinus infection. I was given pills to take and a few days later the pain had stopped. My glands were still swollen but it no longer hurt so I didn’t really pay attention to the other part and figured it would go away soon.
Fast forward the rest of the month, my period was still there only spotting, which isn’t really that big of a deal for most girls. It lasted all the way through my Dad’s wedding, the week I spent at my friends house while he was on his honey moon, up until my period was due to start again. And boy did it start again. I remember when it started going to the super market with my dad and picking up super jumbo sized tampons and saying to my Dad, “Yea I learned my lesson last time.”
Well to give any sort of a clue as to how bad things were about to become in the next week, I went through the box of twenty of those in about three days.
As things progressed that week, I was losing more and more blood. It was a mess really. I was diagnosed on a Wed and things started to get noticeably worse the Thursday of the previous week. I was having to get up about every two hours. With each passing day it got worse. I don’t remember much up until that Sunday when I had to miss church because of “the mess” that was starting to happen (we have yet to go to church every Sunday as a routine since I was diagnosed). I remember this because I had been sitting on the couch with my Dad and Denise (my step-mother) discussing my period. It had become a topic of discussion in my family, as I discussed with my step-mom just recently she thought it was strange to be missing church because of a period. Well then my Dad explained that I couldn’t really get off the couch and I was getting light-headed .
Here’s the thing, I was a 14 yr old girl being raised by mostly my father, he didn’t know what was normal or not from this.
All in the meanwhile my stepmom behind my back had urged my Dad to send me to a Doctor, that none of this was normal for periods and even so that I was losing a lot of blood and that needed to be taken care of. My step-mom was talking to me on the phone that night (they hadn’t even moved in together yet because they were still waiting for word back on the house they wanted to buy) and said that I was weak because I was anemic and needed iron. I had just ended basketball season so I wasn’t used to not exercising everyday anymore. That I needed to start taking one-a-day multi-vitamins to get more iron. I’m not sure how I got the advice of exercising because that wasn’t what she told me from this discussion but somehow I got into my head that exercise would be a good idea.
OK, I’ll follow this advice maybe it will get better, so I went down to the basement and ran back and forth a few times. Dear GOD was that a horrible idea. All of the sudden after a running back and forth twice, my heart began beating really fast. My heart felt like it was about to explode out of my chest and became light headed as I went upstairs. I went to the bathroom because I felt like I was going to puke. As soon as I got to the bathroom the light headedness turned to dizziness and I started to fall into the wall of the bathroom, I put my hands against the wall to stop myself and then my knees gave out and I fell to the floor. I started to sob helplessly. I was so frustrated, I slammed the floor and said out loud to myself through sobs, “What the hell is wrong with me?”
I’m sure you guys are all wondering, why I hadn’t gone to the doctor by then or at least the ER. You know why, because I was 14 and no one but me knew how I was feeling. Furthermore, things surely couldn’t have been as bad as they really were, I was just being dramatic. I would get these certain episodes, and then I’d be fine. See because as long as I would rest or sit down for the most part I was fine. And since little movements caused undesired messes, I stayed seated for the most part. We are trained as teenagers to think we’re dramatic, and we train ourselves to believe that we’re invincible. I had missed school several times in middle school, I think my first year of 8th grade I racked up about 15 days from being “sick”. However, 75% of the time I was faking it because I dreaded going to school. I really had no idea what was going on either because this was due to a period. I had only been having them a year, and surely I couldn’t be that sick from just a period I thought. I knew I was losing a lot of blood but I didn’t know the amount of blood that I was losing was putting my life in danger.
I was right on one count, I wasn’t sick because of my period. My period and the bleeding was just the side effect of what unknowingly at the time the process of immature white blood cells growing uncontrollably in my blood crowding the room for the red blood cells that carry oxygen to have the ability to produce. At least it’s something like that, I’m not a medical professional, just know there weren’t enough red blood cells and way too many white blood cells. But we’ll get to that in a minute.
I remember the first day I stayed home from school on that Monday. I was sleeping on the couch until noon. I hadn’t been doing much moving and was SO EXHAUSTED at that point. Nonetheless, I was hungry and I was a big fan of egg salad sandwiches and decided I needed to eat something, so I got up put the water in the pan and to save me a trip put the eggs in the water before it started to boil. I then laid back down to wait for them to boil, as soon as I closed my eyes I passed out for another hour and woke up to the sound of water over-boiling. SHIT! I got up quickly and took the eggs off the pan. The eggs were still good so I then went to grab the stuff to make it. I remember I was feeling light-headed as I walked around the kitchen to get the ingredients to make the salad. I grabbed them and brought them with me to the couch and put them on the coffee table in front of the couch so as I made it I could sit down. The process of grabbing the miracle whip and adding it to the cut eggs, adding the paprika and salt and pepper and stirring it all up caused me to feel so weak that I started to cry. I was starting to feel desperate. I got up and because I realized standing was too much, I crawled to my room (which wasn’t too far away because at the time we lived in a ranch house), and grasped for the phone that was on the floor. I picked it up and dialed my Dads work number. I just started to cry and plea.
“Dad, please just get me a doctor’s appointment. I need to see a doctor, there’s something wrong with me:”
You could hear the sympathy in his voice at this point, “Alright, I’ll try to get you one as soon as possible.”
He called the doctor and explained what was going on; the next available time that Dr. Abrams my pediatrician/gynecologist was scheduled to be in was that Wednesday. I found out recently as I’ve tried to collect information about what exactly happened, that my step-mother was worried that we were even going to be waiting until Wednesday because of the rate at which I was losing blood.
I retreated to the couch imagining what they were going to say at the doctor’s appointment. I imagined myself in a hospital gown being feeble and using a walker to get around. Ha, but that was crazy talk, I wasn’t THAT sick. Normal people like me didn’t get that sick. Only people on T.V. in those cheesy lifetime movies get that sick. I knew absolutely nothing about cancer, about blood disorders, about ANYTHING really that could be wrong. I just knew I felt like shit. As I write all of these things now with perspective, I wonder to myself why I didn’t go to the doctor sooner, but as your going through something like that, the actual process, you really don’t put the pieces together on the whole picture of things. Things don’t become 20/20 until after you can look at it as a whole.
Then in the middle of the night I awoke to lying in an entire couch cushion soaked in my own blood. How humiliating I thought to myself, I quickly got up and grabbed paper towels and dampened them a little to clean it up, dabbing at it until it all was eventually gone. The next day my Dad looked in the trash and saw the paper towels because I told him what happened. He noticed that the blood was a funny color but he wasn’t sure if it was pink because it had been deluded but he also didn’t see the actual mess. He had no idea how much there was, and I’m pretty sure since he’s a boy I’m sure he wasn’t exactly comfortable with asking how much. I think because he didn’t see it and it was so easily removed from the couch though that it probably wasn’t that bad, because blood does not easily clean itself normally from fabric.
Wednesday morning came by and the bleeding from my period had subsided considerably, at least from memory. It all varied by the hour of the day really and we went to the doctor before noon. I thought maybe today I was going to get to go back to school and all of this nonsense would end. However, something new was wrong, as soon as I even so much as sat up my heart began to beat really fast. I wasn’t even moving, just sitting up. Had to of been going at least 150 beats a minute. I went to my dad and asked him what he thought. It was much like anything else that had started to become weird ever since my period started to get noticeably out of whack. I ran to my dad to ask him what he thought.
“Dad, feel my pulse, my hearts beating REALLY fast”.
His face became perplexed. “Hmm.”
These were all faces he kept making ever since I noticed other things wrong, things that were “different”. I started to notice when I looked in the mirror that my glands were still swollen from what doctors told me a month before was just a sinus infection.
“Dad, do my glands look swollen to you?”
“Hmmm, a little, yea’.
My face also seemed to me to look somewhat paler; I got a second opinion from my Dad again.
“Dad, does my skin look a little funny to you?”
“Hmm, a little yea”.
I can’t remember his reaction at the time but he’s told me that I looked really sick. And that I looked incredibly pale. Nonetheless I asked him if I would be OK to go to school, because my period in the morning was better.
“Ahhh, well I mean you’ve already got the Doctors appointment scheduled, why don’t you just stay home and we’ll get this sorted out then,” he said.
“Alright”.
To the doctor we went, I was actually kind of excited to go, because I wanted to get better. I felt relatively OK again, but still was happy to finally get to a doctor. I was hoping though that I wasn’t in my head being dramatic, no one likes to hear that they were over reacting. I however, was not excited when we got there and had to wait 40 minutes to be seen. Finally my name was called and we went back to have the normal prep work procedures done. They took my temperature first, it read a 100 degrees. That was odd I thought, but then again after everything that was going wrong it didn’t really shock me. Then they gave me a finger print, the most painful finger print of my life mind you. When you prick someone’s finger the blood is suppose to come out no problem. It’s thick and dark red, with a few short squeezes usually getting the job done for the samples they need.
The nurses took my finger. SQUEEZE. She was putting quite a bit of pressure behind it. There was slight drop. SQUEEZZ. Another slight drop. “Whew,” she said examining the blood. It was weird red color and rather thin. She squeezed again, this time putting her body behind it. She got a few more drops and she was done. Thank god. She examined the blood before she left and gave a concerned look, I thought nothing of it, and then left.
“Doctor Abrams will be with you in just a minute,” she said before she left.
Sure enough Dr. Abrams came in not long after. My dad left the room and she gave me the standard feet in the stirrups exam that you get. This was my first experience with a gynecology visit and well it was about as awkward as you’d imagine for a 14 yr old. She was soon finished and I don’t really remember what she said. I just remember as I sat up she noticed these huge bruises were on my knees and other tiny bruises scattered up and down my legs. She asked what they were from, I presumed basketball.
“Does it hurt when I touch them,” she asked.
“No, not really,” I responded.
“Hmm.”
She began to run her finger along my leg. From experience I now know she was looking at marks on my legs that are known as patechiae, and touching the marks to see if she felt any bumps. It’s usually flat to the touch, pinpoint, round spots that appear on the skin as a result of bleeding under the skin. According research I’m doing on this (while Wikipedia is not official, it will do for facebook), “While not always serious, they are however the hallmark sign of other potentially serious illnesses including leukemia”.
Poor thing, looking back on it she was trying her best not to panic, she wasn’t sure but I know she was already suspecting Leukemia. She had me get dressed, then came back in and did the other normal procedures such as check my breathing, shine the flashlight in my eyes and in the back of my mouth, and lay down and feel my stomach. She noticed the same thing I had earlier, that my glands were still swollen then felt my glands. I know the next thing she did, now that I know its procedure, was to feel my stomach, more particularly my spleen to know that it was enlarged. According to Livestrong.com, “People with leukemia have an overproduction of abnormal white blood cells. The spleen must filter and collect these excessive numbers of cancerous cells. This causes it to enlarge.”
My dad was brought back into the room and Dr. Abrams said she’d be back shortly. And by shortly she meant and hour later. First thing she said upon return was that I was anemic and lacked iron like Denise had said and that was why I was feeling so tired. The next thing was that my white blood cell count was too high for the machines there to count, that the machines there only counted up to 60,000 white blood cells. She started speaking rather fast now, letting us know that it could possibly be mono. The poor thing had no idea how to break it to us what she really though it was. She continued to say that I needed to get to the hospital as soon as possible to get a blood transfusion and that I was facing a number of things that could happen, including passing out in school and potentially hurting myself. She had called Dr. Raj, a doctor at Kosair Children’s Hospital (she failed to mention on purpose that his specialty was pediatric oncology), and they had scheduled a work up of some sort and got me a room scheduled and that she would come tomorrow morning to check on me (also not something a doctor would do for mono).
Just recently my Dad admitted that he didn’t really start to worry until he had heard that my white blood cell count was too high for the machines to count. He said he spent the half hour drive up to Kosair convincing himself that it wasn’t Leukemia.
Hospital? Well at least I wasn’t over reacting about how sick I had felt, and mono seemed like a reasonable thing to me since I had known someone not too long ago at school who had said they had mono. I had never been to a hospital in my entire life, not even a broken bone, so when we got there and the nurse directing us to the “express waiting room” had asked if we had brought luggage me and my Dad looked at each other confused. “Well sometimes patients bring luggage with them,” she explained. “No we just found out that we were supposed to come,” my Dad said. I think she asked this though because she saw I was waiting to be directed to a room on 7 West, the peds onocology unit. Now, being less naïve getting an express waiting room in a hospital is NOT a good sign and should raise several red flags. I personally at the time was just happy that I was getting a bed and cable TV to watch while I was waiting.
As we waited over the next few hours we made several phone calls, including to both of my sisters and to my step mother who had just gotten back from making the down payment on the house her and my Dad were buying together. I left a message on our home answering machine, “Hey Haley, we’re at the hospital right now, Candy’s going to come by and pick you up.” Candy and Haley are both my older sisters. In the meantime before everyone showed up, Julie, my angelic sweet resident doctor had showed up to give me the lowdown as to what we were going to do. She immediately struck me as cool because my chuck taylor shoes at the time which were completely covered in different colored markers laughed and said, “Ha, I used to do that when I was your age”. I remember she had said I was going to get a blood transfusion and making a joke as I grabbed my arm saying I was a Jehovah Witness and didn’t believe in getting blood transfusions because needles still scared me back then. But first they would need to draw my blood again. Thus they did, and Julie came back with the results that my blood cell count was 120,000.
I didn't know it at the time but that’s bad, really, really bad. Your normal blood cell count should be between 8,000 and 12,000 at the MOST. At the most, It was still 12x higher than what it should’ve been. It had only been Julies first week working on 7 West. She told me months later after coming to visit me when she was no longer my resident that when she read the charts it was the first time she saw it and thought, “Oh my God, this is real”.
When Haley got there she said, “Yea, you’re never allowed to leave an answering machine message like that ever again, I thought something had happened to Grandpa”. Haley, who’s only one year older than me, had no clue that I was as sick as I was either.
“Oh come on, you’re not that sick. Look sees, your fine,” Haley said. She wasn’t trying to be insensitive but unless you were paying attention to the color of my skin, I didn’t look that bad I don’t think. I was sitting up for a while and laughing and talking.
However, not long after she came in every time I sat up I started to get the chills and felt immediately warm as soon as I had lain down again. My other sister Candace was not as optimistic. I went to the restroom and I remember coming back in to hear her saying to my Dad that blood cell counts of 120,000 were bad. Not something he didn’t already know. I also remember Denise finally getting there after she had already visited where my room was scheduled to be, rm. 737. In the halls she had seen a sign that had said End of Chemo party and then coming down and talking about that.
All of the details became fuzzy up until I met Dr. Raj, one the pediatric oncology doctors of Kosair Children’s Hospital. He took my parents out the room and I don’t remember if Haley and Candy were asked to leave at the same time or before. I just know that the next thing I remember was everyone coming back in the room slowly. Denise was wiping her eyes; my Dad was sad, Dr.Raj very serious and somber, and Julie’s eyes red from crying continually after she saw my blood cell count.
I was watching TV and it was interrupted for this speech and I thought everyone was being a tad dramatic themselves. I was in the hospital but come on. I know of all the things you’ve heard I should’ve been scared but after each bad episode and symptom that I’ve told you about, I was actually beginning to feel better that night, minus the cold chills from every time I sat up. My Dad came over to the bed I was laying on and started to hold my head as Dr. Raj started speaking. He was using all of these really big words and I gave up on trying to keep up. I started to try and pay attention to what was on TV, it was Kings of Queens, and then I noticed in the background the words, cancer of the blood, my ears perked up at this point. I still hadn’t made the connection that this is what I had; he continued on with his big fancy medical terminology and then finally ended his speech with a pause and short sigh and said, “It looks like Leukemia”.
With one giant gasp, I looked up at my Dad in absolute disbelief and terror, Leukemia. It was word that held an entirely different meaning in my family, I had no idea what the fuck leukemia was, all I’d ever heard about leukemia was that it killed my fathers sister when he was a kid. I didn’t even know it was cancer.
“Dad,” I said through a cracked voice. He knew what was going through my head.
“I know,” he said as he slowly nodded his head. I could see the red in his eyes as he was doing his best not to break down too. I looked away and in a matter of seconds all the images in my head of what the funeral was like. The things I heard about my grandmother and the breakdown she had when she threw herself on her coffin as she was about to be buried. The looks I had imagined on my father and aunts and uncles, the absolute sadness of it all.
I looked away shaking my head, and through a raspy voice said, “I don’t want to die”. My life didn’t flash before my eyes, all of the things in life it was possible for me to do did. Then all of the sudden blackness came over these thoughts, as if a time line was being cut off. All I could think was, holy shit I could literally die. I didn’t think that I was going to for sure but I just knew that it was the reality of what was possible.
Dr. Raj, I guess sympathizing with my fear said, “Now, it may not be leukemia, we’ll have to do further testing but as of right now it looks like leukemia”.
There was a joke one time that I remember seeing on scrubs when John was supposed to tell the patient bad news. Then because he panicked gave him some possible hope, despite that it would be on some magical medical marvel that it was going to be different. And as he came out of the patients room Bob is standing there very stern and telling him that he did wrong. He said you see how happy that patient is now, you tell one little good thing and they hold onto. It’s very true; when he said this I was relieved to some extent. You know bad things happen to people but you never believe they could happen to you. At least teenagers don’t because we train ourselves at that age we are invincible. That little relief made a difference for the first couple of nights though.
The door opened and my sisters were finally let in the room. My step-mother Denise through tears said, “Paige has leukemia”. Everything went in slow motion from there, my sisters both just burst into tears and they all clung to each other as my Dad stayed by my bedside. I got antsy and thought, wait he said there’s a possibility it’s not leukemia. Don’t say it as if its’ true yet, we don’t know for sure yet I thought. However, the reality was that I had every single hallmark sign that it was leukemia and that they had move fast to fix what was wrong. 120, 000 white blood cell count is bad, very bad. Actually it used to be back in the day that anything over 100, 000 was considered terminal. And when I was diagnosed they gave my about a 40% chance of making it, it changed after 2 weeks when the chemo started working but at that moment I had a 40% chance.
I was still clinging onto that hope though. I was about to be prepped for surgery to insert what’s called an apheresis catheter in a large vein in my groin area. This was what was going to allow for the procedure over the next 5-8 hours that would be removing all of the white blood cells from my body and injecting me with healthy red blood cells to replace all the ones I had lost.
Before the surgery another doctor arrived at the door, Dr. Cheerva, who showed up with a wheelchair and I’m not sure if she actually physically pushed my wheel chair because I don’t think I’ve ever seen a doctor do that, but I do remember getting a tour of 7 West and her telling me all about it and showing me the teen room. It wasn’t long after I got to my room that I was being wheeled out on bed to be taken to the surgery floor.
I woke up around 3am after the surgery to my step-mother at my bedside holding my hand in a hospital room and to my right my Dad passed out on the guest bed.
Well shit, this wasn’t a dream, awesome.
I sat up and was greeted by two nurses who were working on the procedure that was being done. One was a very enthusiastic blond woman who introduced herself. She introduced me to Debbie, the other woman who was next to her. I don’t remember how I got from being really upset about being in a hospital to laughing my ass off. Tracy had a knack for making you laugh in just about any situation and willing to do just about anything to get a kid to laugh, that was how she got her nickname “Crazy Tracy”. Somehow we all were laughing about the silliest things; I have no idea what about or anything. That’s the thing about the nurses of 7 West; they’re sensitive, sincere, and funny. They don’t treat you differently because you have cancer, they’ve seen it all and if they stick around long enough they know you’re not different.
Dr. Abrams showed up around 10 or 11 am. She slowly crept into my room fearing that I was going to be mad at her. I just looked her and saw that intimidation she had and said, “Welp, good news is its not mono, bad news its cancer”. She was still very slow with what she said. “Yeeea. Bad news is its cancer. Paige I’m sorry I didn’t tell you yesterday. I just didn’t want to say anything until I was sure.” I wasn’t mad at all, I was pretty thankful she said didn’t.
Over the next few days the phone calls were made to let friends and extended family and the school know what was going on. I told people I had leukemia but I didn’t really know of anything else that was going on, still hadn’t really sunk in what I was about to go through. I remember a specific night when I asked Denise, “If I really do have leukemia, is it full blown, like is there a chance we caught it early at all”. I had been telling people I had it, but I still wasn’t a 100% sure that this was real.
“Well first of all Paige, you do have leukemia. Second, we don’t know everything yet so we’re just going to take this one day at a time,” she said.
It wasn’t too long after that I remember in the middle of the night during the first or second week that I started to go over in my head who I had known that had cancer. I remembered my neighbor Josh who I used to play basketball with in his backyard every day talking about the neighbor who lived on the other side of my house. She had passed away the year before, “Man she was the coolest old lady. I remember one time my ball rolling out into the middle of the court while she was getting her mail and saying, “How do you like it, an old lady with a mohawk””. In reference to patches of hair she had lose resembling a mohawk. It was in that memory Josh had provided me that had fueled me in what attitude I eventually brought to cancer. I thought fuck it; if I go down I want the same thing to be said about me. I wanted people to be able to say that I was cool. I wanted people to have funny memories. From that story I also got the idea to shave my hair into a mohawk. If I was going to lose it anyway, why not right? I had originally planned to keep it for a day as a joke, but the reaction it got and the jaw drops that came from my nurses and doctors were too priceless not to keep it up.
My family kept asking me, “Are you sure? I mean there’s people who go through chemo who don’t lose their hair, you don’t if you will or not.” Yes I was sure. I shaved it even before my hair had the chance to start falling out, if I didn’t get to have a say in having to do chemo, I was going to control what I could. I was going to shave it and beat cancer to the point. I was NOT going to be one of those sad kids in the commercials. I was going to be a stubborn hard ass about it. I wasn’t some happy go lucky kid; I was already an angry kid who came from a turbulent childhood filled with abuse and neglect from my birth mother. It had only been a couple of years since custody was taken away from her and granted to my father. At 14 I was stealing my father’s cigarettes, smoked weed on school property and sneaking into his liquor cabinet (it all tasted disgusting at the time but doing something I was told not to was my M.O.).
It’s probably where the attitude came from, I was a pissed off kid to begin with. It helped though through it all though, with all the defiance I held towards authority, I had a defiance to never ever let cancer make me feel weak too. Cancer was not going to tell me how to live my life. Fuck cancer. Eventually after faking being brave and facing things head on, you get used to them. It's like ripping a band aid off in one swift motion instead of doing it slowly. It stings for a moment but then it’s over. And as that attitude came about the less I thought about death, I was going to fucking fight. Bring it on.
I think that’s also why I hated watching the St. Jude commercials, they were sad. I wasn’t going to be sad about having cancer, or at least not let anyone see this. Lance Armstrong wrote about in his book that the irony of cancer is that as a patient you’d think that it would be others who’d have to tell you that you’re going to be fine. However, that in a lot of cases, it’s the patient who tries to make sure everyone else around them doesn’t worry. In the beginning I remember my dad’s co workers came in and were enthusiastic and said they wanted me to get better, that they wanted to see him come to work happy. Ouch. He just shook his head yes and I saw him literally fighting not to cry, because not being happy meant the worst. I just looked at him as I saw this and said sympathetically, “Dad, I’m going to be fine”. I didn’t know what was going to happen but I knew that he needed to hear that.
However, don’t get this twisted when I say get used to, this is simply referring to the ability to endure. Cancer is pretty much as bad as you’d expect. I practically lived in Kosair, every time I went to the hospital for chemo I was there for at least a month, which is exhausting. There were painful procedures and sometimes nausea that got so bad that every time I sat up or ate anything I’d puke; sometimes 2 or 3 times a day. I sometimes went weeks only eating saltine crackers and ginger ale. And even when I was home I was constantly going to the doctor about every other week and having to receive platelets or blood. I had a giant tube sticking out of my chest and had to take all kinds of measures to make sure it didn’t get wet when I took a bath which is SO ANNOYING.
Not only that, you’re visibly sick to everyone around you and as a teenager that was something that was hard to get used too at first. While I was used to being bald, that didn’t mean everyone else was. That look of discomfort that comes across people’s faces, it hurts. I will never forget the first time I decided to leave 7 West for a scan that was on the first floor without my bandanna. I was being strolled past the E.R. where there was a row of parents waiting. There I was; completely bald, a green mask covering everything except my eyes with white hospital blankets keeping myself warm looking like something in a sad lifetime movie. I remember the first man on the end saw me and crossed his arm, turned his head and looked away. I started to try and make eye contact with them, I wasn't "staring" but I was looking them in the eye, much like you do when your passing someone in a hallway. Usually you offer a smile right? Every single one of them literally turned their heads and looked the opposite direction.
These people were literally so uncomfortable by what I looked like that just looking at me was hard to do. It hurt but I was also pretty angry about them looking away too, I understand why they did, it’s natural if you’re not used to it but it didn’t change that I was angry about it. I think that’s why I made eye contact though; it was in a way to say yes this is going on. It was a statement. You know because while I had no hair, I was still a person. A person who loved music, watching comedy shows, played sports (while not that well) and video games, and stayed up all night like EVERY OTHER kid my age. I just also happened to be sick. However, because I was bald these people failed to see anything beyond that and looked away as if I didn't even fucking exist.
I’ll be honest though, the novelty of being brave wore off towards the end, and I was tired. If I didn’t feel well, you were going to know it. I was angry that my friends stopped coming to see me because I was in the hospital so long. I was angry that all the people who were there in the beginning weren’t there anymore. This is pretty common because people don’t realize how long fighting cancer can be sometimes and people move on. I stopped trusting people my own age; I didn’t trust that they were going to be there for me when things turned to shit. And cancer is probably one of the loneliest diseases out there because it’s something that’s hard for people to grasp their mind around and truly get it. I think that’s why I started what I did at Kosair, it was for the community to try and get it. That there is sadness yes because kids do die and no one wants to see a child suffer EVER, but see the gift in it and not be so afraid of cancer and to not let hearing the word be such a sting.
It wasn’t about getting money or even awareness. I’m pretty sure thanks to Lance Armstrong we’re all aware. There is lack of understanding though and there is a huge gap between those who have been through it and those who haven’t. Money is cool, yes it helps fund research and that’s crucial, but so many just put the money in the mail and fail to see the real kid.
It wasn’t about getting money or even awareness. I’m pretty sure thanks to Lance Armstrong we’re all aware. There is lack of understanding though and there is a huge gap between those who have been through it and those who haven’t. Money is cool, yes it helps fund research and that’s crucial, but so many just put the money in the mail and fail to see the real kid.
Even yesterday I was telling someone about going to celebrate my 7 year anniversary, she was so happy for me. She adds, "You know sometimes I'll walk by Kosair and I'll see these kids who have no hair. And oh my god, it's just so awful. I sometimes can't even go over there at certain times of the day because it's just too sad". I contained myself when she said this but it proved my point, that this perception that exists out there about the kids at the hospital, it has GOT to change!
My best friend Lizzie, she spent her ENTIRE life from the time she was 5 until the age I am now at 21 years old fighting cancer. The one thing she wanted more than anything in life was to be treated like a normal kid, to not be different, for people to stop being nice to her because they felt sorry for her. (understand and sympathize but don’t feel sorry for them) And as sad as that seems, she was so thankful and her memory and spirit truly lives on. She affected more people’s lives in 21 years of life than some people can manage or dream to do in a lifetime of 70 to 80 years. I miss her but I’ve realized that all I can ever do for her is to enjoy life and not take it for granted.
When cancer was all said and done, I was a changed person, there’s no way you can’t be. You can’t just go through fighting for your life and meeting people who didn’t make it and not be changed. For awhile after the exhaustion of everything I was angry how shallow people in my high school were. They didn’t care about things that mattered (which I mean who really does at 15) they cared about how good their hair looked and I barely had 2 inches. I saw kids I really cared about and became friends with die. It took a couple of years for me to grasp the concept that while my pain was different, pain is pain and should always be sympathetic because everyone has burdens to bare in life. And also that everyone around me was in high school and that it’s pretty normal.
However with all of this being said, through all the sadness and emotional lows and highs; when it comes down to it, I survived. Even when I'm pissed off, angry, or sad in every day life, I am always thankful. It's become a fabric of my everyday living. I have met some of the most amazing people you could think too and gained a second family that made experiencing cancer worth it. I am alive to do whatever I want and the realization of that, the true realization of that, frees up so many things. I am better because of it, I am stronger and fear no longer dictates what I do. It may seem cheesy but that scene in V for Vendetta when Natalie Portman character told V that she wanted to not be so afraid and he tortures her and shaves her head and puts her through hell.
That outcome you see, that scene in the rain, after "she faces her death" which free's her. That is literally what life feels like afterwards, and particularly on this day. I literally went through hell, but I would NEVER change it for anything.
Too many people try to complicate life, make it harder on them instead of molding into the circumstances their giving. People like to ask themselves if their happy. Asking yourself if you’re happy is a lot like asking yourself if you have a drinking problem, chances are if you have to ask something is wrong. Happiness is a state of being, there is not real pursuit to it. The pursuit is the fight we have every day to keep pushing on, life has burdens, but there is no way of getting to happiness. It’s a state of mind.
Fight for your life but don’t fight life. Of course there are injustices that you should fight for and you should never accept less for yourself than you’re capable of or want but that’s a part fighting for your life. Have goals, think about the future but don’t ever expect to turn out exactly as you plan because it won’t. Experience the lows with every fiber of your being and then LET IT GO, that’s what being alive is. Go out to a bar every once in awhile and abuse your liver and get crazy, smoke a cigarette (I need to obviously not make it habit but one will not kill you), be the first one on the dance floor (more than likely people will join in and if not they call you crazy and it won’t matter, you’re not hurting anyone), buy a hammock and sit out in the sun on a warm breezy day under the trees, go on a hike even if you hate nature because you can always say you tried it, take walks outside and look around you and notice how beautiful it all is, try weed at least once, pig out on ice cream and cake once in awhile, go bungee jumping or sky diving, crowd surf to say you did it, wear something outrageous and make people look at you funny, STOP caring about what everyone is thinking of you ALL the time (be considerate of others feelings but don’t fear judgment)...just fucking LIVE.
You start dying the day your born so have fun NOW, take something that can be seemingly boring and make it fun, appreciate everything that is around you now, take a moment each day to look around and appreciate it. Take time to see what’s going on in the rest of the world or even your community and see if there’s something you can do to help. My goal as a survivor is not to live until Im old and gray (I mean I want that, and you should def plan your life and finances based on this in case) but to live each day I can in the moment, I love life. Get to the realization that in the end no one gets out of alive and life starts becoming a lot more fun.
My best friend Lizzie, she spent her ENTIRE life from the time she was 5 until the age I am now at 21 years old fighting cancer. The one thing she wanted more than anything in life was to be treated like a normal kid, to not be different, for people to stop being nice to her because they felt sorry for her. (understand and sympathize but don’t feel sorry for them) And as sad as that seems, she was so thankful and her memory and spirit truly lives on. She affected more people’s lives in 21 years of life than some people can manage or dream to do in a lifetime of 70 to 80 years. I miss her but I’ve realized that all I can ever do for her is to enjoy life and not take it for granted.
When cancer was all said and done, I was a changed person, there’s no way you can’t be. You can’t just go through fighting for your life and meeting people who didn’t make it and not be changed. For awhile after the exhaustion of everything I was angry how shallow people in my high school were. They didn’t care about things that mattered (which I mean who really does at 15) they cared about how good their hair looked and I barely had 2 inches. I saw kids I really cared about and became friends with die. It took a couple of years for me to grasp the concept that while my pain was different, pain is pain and should always be sympathetic because everyone has burdens to bare in life. And also that everyone around me was in high school and that it’s pretty normal.
However with all of this being said, through all the sadness and emotional lows and highs; when it comes down to it, I survived. Even when I'm pissed off, angry, or sad in every day life, I am always thankful. It's become a fabric of my everyday living. I have met some of the most amazing people you could think too and gained a second family that made experiencing cancer worth it. I am alive to do whatever I want and the realization of that, the true realization of that, frees up so many things. I am better because of it, I am stronger and fear no longer dictates what I do. It may seem cheesy but that scene in V for Vendetta when Natalie Portman character told V that she wanted to not be so afraid and he tortures her and shaves her head and puts her through hell.
That outcome you see, that scene in the rain, after "she faces her death" which free's her. That is literally what life feels like afterwards, and particularly on this day. I literally went through hell, but I would NEVER change it for anything.
Too many people try to complicate life, make it harder on them instead of molding into the circumstances their giving. People like to ask themselves if their happy. Asking yourself if you’re happy is a lot like asking yourself if you have a drinking problem, chances are if you have to ask something is wrong. Happiness is a state of being, there is not real pursuit to it. The pursuit is the fight we have every day to keep pushing on, life has burdens, but there is no way of getting to happiness. It’s a state of mind.
Fight for your life but don’t fight life. Of course there are injustices that you should fight for and you should never accept less for yourself than you’re capable of or want but that’s a part fighting for your life. Have goals, think about the future but don’t ever expect to turn out exactly as you plan because it won’t. Experience the lows with every fiber of your being and then LET IT GO, that’s what being alive is. Go out to a bar every once in awhile and abuse your liver and get crazy, smoke a cigarette (I need to obviously not make it habit but one will not kill you), be the first one on the dance floor (more than likely people will join in and if not they call you crazy and it won’t matter, you’re not hurting anyone), buy a hammock and sit out in the sun on a warm breezy day under the trees, go on a hike even if you hate nature because you can always say you tried it, take walks outside and look around you and notice how beautiful it all is, try weed at least once, pig out on ice cream and cake once in awhile, go bungee jumping or sky diving, crowd surf to say you did it, wear something outrageous and make people look at you funny, STOP caring about what everyone is thinking of you ALL the time (be considerate of others feelings but don’t fear judgment)...just fucking LIVE.
You start dying the day your born so have fun NOW, take something that can be seemingly boring and make it fun, appreciate everything that is around you now, take a moment each day to look around and appreciate it. Take time to see what’s going on in the rest of the world or even your community and see if there’s something you can do to help. My goal as a survivor is not to live until Im old and gray (I mean I want that, and you should def plan your life and finances based on this in case) but to live each day I can in the moment, I love life. Get to the realization that in the end no one gets out of alive and life starts becoming a lot more fun.
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