After a hellish three days of a bone marrow biopsy and scans, barely being able to walk from a sore back, waiting for hours, a gallon of apple juice and contrast, living in the bathroom, going without food, being prodded with 3 IVs, and tasting nothing but anesthesia for a day, scans have come back even cleaner than before. My lymph nodes have always been chock full of cancer - and today they're completely clean, no signs of cancer there. Things keep getting better.
New chemo may or may not happen next week or the week after. My liver tests are still slightly high. The docs want to attack while there's so little to go after, to maybe get rid of everything, but if my liver tests don't come down, they feel comfortable with giving me a break for a little while. The new chemo is supposed to lower my counts, which means I'd probably get sick and need blood again - but so far it's had a tremendous effect on the people it's been given to. So, as always, good with the bad. We'll see what happens. I feel like, if my liver functions come down and I get the chemo, it's because that's what God wanted and it's meant to be. If they don't and I take a break from chemo/treatment, then that's what God wanted and it's meant to be. Either way, the only thing I can think is that what will happen will happen and it will be for the best.
Thursday, October 22, 2009
Monday, October 19, 2009
Things I've Learned From You, and Things I Hope You Can Learn From Me
Remember that things don’t always have to be perfect. There is always beauty to be found in imperfections; in breakdowns; even in chaos. Sometimes you have to dig for it, and sometimes you’re suddenly just struck, but it’s always there. You just have to be open to it. Experience everything. Don’t shy away. All things happen to you so something else can happen to you, and where there are low moments, there are bound to be good ones as well. Seek them.
Don’t worry. Life will happen to you anyway. Take what you are given and do whatever you can with it. Make it what you want. Build around things you cannot change but never give up on the hope that someday change will be possible. Experience things as they happen; if that means you have to slow down and stop making so many plans, do it. If it means that you need to get out of the past and rejoin the present, do that. Try a day of spontaneity: don’t plan anything beforehand, just listen to what you want in that moment and follow it. No worrying allowed. Be free. No expectations, no regrets. Listen to yourself.
Don’t judge. Don’t make decisions based on hastily formed opinions. Hear and welcome all sides. Feel compassion. Try for sympathy and maybe you’ll even find empathy. In that, you can also find healing. Discover patience. Be open and adventurous and try new things. Keep learning.
Don’t take things so seriously – including yourself. Be able to laugh at yourself without hurting. See yourself as your friends see you and remember that you are loved. You are great. Value your friends’ opinions enough to understand that they wouldn’t be friends with someone who wasn’t! Don’t feel unloved if you are not the center of attention. Attention only matters if it’s from those who matter to you, and because you matter to them, too, you don’t even need it. The opinions of others only become important if you let yourself take them all the way to your heart. It’s up to you if you want to let yourself do that.
Don’t be afraid to make mistakes. You can make as many as you want, as long as you learn from them and carry the lesson with you. The amount of lessons you carry is directly proportional to your level of knowledge and wisdom. If you know that you were wrong, be proud, because it means that you are smarter now than you were then.
Remember to take some time for yourself. See friends. Be with family. Relax. Rest. It’s all needed. Go out there and do whatever you want or need to do, but make sure you always come back to you. Don’t lose yourself. Don’t be frustrated if you can’t do all that you want to do – know that with whatever it is you do get to do, you are directly affecting others, and someone’s life is better because of your efforts. Do what you can for your section of the world, but don’t take on too much. Leave the other sections for the other people they belong to – don’t be selfish!
Laugh as much as you can.
Love as much as you can.
Live every day of your life.
Don’t worry. Life will happen to you anyway. Take what you are given and do whatever you can with it. Make it what you want. Build around things you cannot change but never give up on the hope that someday change will be possible. Experience things as they happen; if that means you have to slow down and stop making so many plans, do it. If it means that you need to get out of the past and rejoin the present, do that. Try a day of spontaneity: don’t plan anything beforehand, just listen to what you want in that moment and follow it. No worrying allowed. Be free. No expectations, no regrets. Listen to yourself.
Don’t judge. Don’t make decisions based on hastily formed opinions. Hear and welcome all sides. Feel compassion. Try for sympathy and maybe you’ll even find empathy. In that, you can also find healing. Discover patience. Be open and adventurous and try new things. Keep learning.
Don’t take things so seriously – including yourself. Be able to laugh at yourself without hurting. See yourself as your friends see you and remember that you are loved. You are great. Value your friends’ opinions enough to understand that they wouldn’t be friends with someone who wasn’t! Don’t feel unloved if you are not the center of attention. Attention only matters if it’s from those who matter to you, and because you matter to them, too, you don’t even need it. The opinions of others only become important if you let yourself take them all the way to your heart. It’s up to you if you want to let yourself do that.
Don’t be afraid to make mistakes. You can make as many as you want, as long as you learn from them and carry the lesson with you. The amount of lessons you carry is directly proportional to your level of knowledge and wisdom. If you know that you were wrong, be proud, because it means that you are smarter now than you were then.
Remember to take some time for yourself. See friends. Be with family. Relax. Rest. It’s all needed. Go out there and do whatever you want or need to do, but make sure you always come back to you. Don’t lose yourself. Don’t be frustrated if you can’t do all that you want to do – know that with whatever it is you do get to do, you are directly affecting others, and someone’s life is better because of your efforts. Do what you can for your section of the world, but don’t take on too much. Leave the other sections for the other people they belong to – don’t be selfish!
Laugh as much as you can.
Love as much as you can.
Live every day of your life.
Saturday, October 17, 2009
Which Would You Choose: CAT scan, MIBG scan, or bone marrow biopsy?
Unfortunately for me, it's not a choice; I get to have all three! Tomorrow, Monday morning, I go in for a bone marrow biopsy, which means I am not allowed to eat before the surgery and have to be at the Children's Hospital of Philadelphia (CHOP) at 8:00 am. Hopefully they take me in early, and I get put under general anesthesia. The doctors then proceed to stick a huge needle into my back hip bones to extract the marrow, checking to see if the cancer has reached it there. Once they're done with that delightful business, they slap on some cushy bandages and wake me up! Now, this may be weird, but this may be the easiest test out of the three I'm to receive this week, and this test doesn't bother me in the slightest. I am totally used to gigantic needles being stuck into my backside while I'm out cold and I don't even know it. It takes maybe 5 minutes total, and I wake up pretty quickly and easily from anesthesia, so no bother. For all I knew, I was out for days, or 2 seconds, and even "now" means very little when I wake up. Normally I want to go back to sleep, but after a few shakes from my mom I'll be up. I can take a nap in the car ride home if I want. Then I'll be sore for a few days and be good as new later.
I get to return to CHOP on Tuesday for a CAT (or CT) scan and to receive the contrast intravenously for my MIBG scan scheduled for the next day. This is probably my least favorite day of the three. First of all, I again can't eat before the test. Instead, I get to drink an entire jug of apple juice mixed with contrast - half while on the way to CHOP at 6 in the morning, half when we get there. Now, this is not fun for anyone, but it's particular torture for me. I don't like to drink...well, much of anything, really. I drink maybe a bottle of water a day, and somehow I'm not dehydrated. I almost never get thirsty, although my mouth will get dry. That's pretty much the only reason I ever feel like drinking something - because my mouth is dry. Also, I can't stand ingesting that much of anything. Putting too much in my mouth at any one time makes me feel sick. I am the slowest eater in the world because of this. So, this contrast-drinking takes me double the amount of time it would take for most other people, and it causes me physical pain. This might be the only test you've heard of, and it's the only one I really truly dislike! The actual test itself is never much fun for me either. I lay down on a thin section of the machine (which, after a bone marrow biopsy, kind of hurts my backside) and put my arms above my head, just like I'm told to. The board I'm laying on then moves backward so that my head and body is in the middle of a large open circle, with the magnetic imaging strip moving through this circle. At times I'm told to "breathe in, and hold". Just when I think I can't hold it anymore without imploding, the soothing lady's voice comes back through the speakers telling me to "breathe". Then a nurse comes in to inject more contrast into me through my IV. This dye sends heat to my throat and puts pressure on my bladder, and if it goes too fast it can make me dizzy. I have to warn the nurse of this beforehand every time. These sensations last for a few minutes until the end of the test, when the nurse comes back and flushes my IV with heparin and saline. Then, finally, that test is done. In total, it probably takes about 20-30 minutes.
I then go to the Nuclear Medicine section of the hospital, where I meet with the MIBG scan nurses, most of whom I've known since I started going there more than 6 years ago. The "MIBG" in "MIBG scan" stands for something, but even after all this time I don't know what that something is! In fact, very few of the doctors do! I do know that it's a big long word that seems to travel down most of the page when typed out, and as much as I love big words, I don't much love big unpronounceable words that are rarely ever used in conversation. I also know that it is another scanning machine, similar to a CT scan, that uses an injected contrast. However, this one's different. The contrast, which is what the MIBG actually is, is a radioactive medicine that only sticks to neuroblastoma cells, and under the scanning machine, it makes them glow. Because it only sticks to neuroblastoma cells, MIBG scans are only given to neuroblastoma patients, so the nurses working there come to know the kids who receive these scans very well, since they're always the same kids. This also means that there are only a few of these machines in the entire world. The contrast has to be injected on a Tuesday because the medicine is flown in all the way from Canada on Monday, so I will always have MIBG injections on Tuesdays! The dye then has to stay in my body for a full 24 hours, so after the MIBG injection on Tuesday, we drive back home.
On Wednesday morning, we come back for the actual MIBG scan. Just like the CT scan, I have to lay on a thin board, but this time the scanning part - a large flat surface - comes towards me. They have to get it lined up perfectly, and it comes as close as it possibly can to my face without actually touching. This is not a good test for the claustrophobic! It's a longer test, so they actually let me watch a movie while I'm being scanned; before I get on the board, I always go through their racks and pick a movie to watch, load it into the player on the rolling TV cart, fast forward through the previews, and hit play. Since they know me well there, they often try to find movies just for me now. Most of their other patients are much younger (the average age for a neuroblastoma patient is 2), so most of their movies are little kid movies. I'm allowed to keep my head tilted for most of the scan to watch it. The scan takes about 45 minutes - 1 hour, so I never get to see the full movie; sometimes I'll go out and rent the movie after watching the first hour so I can see the ending at home! Sometimes I don't even make it that long: I end up falling asleep during the scan.
Then, an hour later, that's it! Done. No sweat. Wednesday is always the easiest. My mom and I will often go out to eat in Philly somewhere once that is done. If we have time, we may even be able to make it to a museum or something. I love going to Cosi, getting a delicious salad, and then walking next door to Urban Outfitters! The last time we went, I walked into both Cosi and Urban Outfitters without my wig, completely bald, and it took my mom half an hour to notice this. I felt great. I always feel great when these three days are done.
I get to return to CHOP on Tuesday for a CAT (or CT) scan and to receive the contrast intravenously for my MIBG scan scheduled for the next day. This is probably my least favorite day of the three. First of all, I again can't eat before the test. Instead, I get to drink an entire jug of apple juice mixed with contrast - half while on the way to CHOP at 6 in the morning, half when we get there. Now, this is not fun for anyone, but it's particular torture for me. I don't like to drink...well, much of anything, really. I drink maybe a bottle of water a day, and somehow I'm not dehydrated. I almost never get thirsty, although my mouth will get dry. That's pretty much the only reason I ever feel like drinking something - because my mouth is dry. Also, I can't stand ingesting that much of anything. Putting too much in my mouth at any one time makes me feel sick. I am the slowest eater in the world because of this. So, this contrast-drinking takes me double the amount of time it would take for most other people, and it causes me physical pain. This might be the only test you've heard of, and it's the only one I really truly dislike! The actual test itself is never much fun for me either. I lay down on a thin section of the machine (which, after a bone marrow biopsy, kind of hurts my backside) and put my arms above my head, just like I'm told to. The board I'm laying on then moves backward so that my head and body is in the middle of a large open circle, with the magnetic imaging strip moving through this circle. At times I'm told to "breathe in, and hold". Just when I think I can't hold it anymore without imploding, the soothing lady's voice comes back through the speakers telling me to "breathe". Then a nurse comes in to inject more contrast into me through my IV. This dye sends heat to my throat and puts pressure on my bladder, and if it goes too fast it can make me dizzy. I have to warn the nurse of this beforehand every time. These sensations last for a few minutes until the end of the test, when the nurse comes back and flushes my IV with heparin and saline. Then, finally, that test is done. In total, it probably takes about 20-30 minutes.
I then go to the Nuclear Medicine section of the hospital, where I meet with the MIBG scan nurses, most of whom I've known since I started going there more than 6 years ago. The "MIBG" in "MIBG scan" stands for something, but even after all this time I don't know what that something is! In fact, very few of the doctors do! I do know that it's a big long word that seems to travel down most of the page when typed out, and as much as I love big words, I don't much love big unpronounceable words that are rarely ever used in conversation. I also know that it is another scanning machine, similar to a CT scan, that uses an injected contrast. However, this one's different. The contrast, which is what the MIBG actually is, is a radioactive medicine that only sticks to neuroblastoma cells, and under the scanning machine, it makes them glow. Because it only sticks to neuroblastoma cells, MIBG scans are only given to neuroblastoma patients, so the nurses working there come to know the kids who receive these scans very well, since they're always the same kids. This also means that there are only a few of these machines in the entire world. The contrast has to be injected on a Tuesday because the medicine is flown in all the way from Canada on Monday, so I will always have MIBG injections on Tuesdays! The dye then has to stay in my body for a full 24 hours, so after the MIBG injection on Tuesday, we drive back home.
On Wednesday morning, we come back for the actual MIBG scan. Just like the CT scan, I have to lay on a thin board, but this time the scanning part - a large flat surface - comes towards me. They have to get it lined up perfectly, and it comes as close as it possibly can to my face without actually touching. This is not a good test for the claustrophobic! It's a longer test, so they actually let me watch a movie while I'm being scanned; before I get on the board, I always go through their racks and pick a movie to watch, load it into the player on the rolling TV cart, fast forward through the previews, and hit play. Since they know me well there, they often try to find movies just for me now. Most of their other patients are much younger (the average age for a neuroblastoma patient is 2), so most of their movies are little kid movies. I'm allowed to keep my head tilted for most of the scan to watch it. The scan takes about 45 minutes - 1 hour, so I never get to see the full movie; sometimes I'll go out and rent the movie after watching the first hour so I can see the ending at home! Sometimes I don't even make it that long: I end up falling asleep during the scan.
Then, an hour later, that's it! Done. No sweat. Wednesday is always the easiest. My mom and I will often go out to eat in Philly somewhere once that is done. If we have time, we may even be able to make it to a museum or something. I love going to Cosi, getting a delicious salad, and then walking next door to Urban Outfitters! The last time we went, I walked into both Cosi and Urban Outfitters without my wig, completely bald, and it took my mom half an hour to notice this. I felt great. I always feel great when these three days are done.
Friday, October 16, 2009
The Cranes
She was sitting up in the bed, the head tilted forward and her back leaning against it. She had her legs under the sheets; it was a cool night.
"If I could take this from you, I would, in a heartbeat. We love you so much," he was telling her.
She was nodding. She kind of always knew, didn't she?
"Cancer," the doctor said.
Her dad was still talking.
She was twelve.
...................................................................
"What do you mean, your parents decided to go to dinner and drag you with them? Kristen, it's Relay for Life! They know about it! They know I'm the team captain and that you're on the team and that you're my best friend and that this means a lot to me! Why would they do that?" I yelled into the phone, pacing back and forth in my high school Commons room. Rain had forced the big cancer fundraiser event indoors this year, but it wasn't stopping the spirits of the people involved. People still had games and activities set up, and team members were dressed up and walking the track to raise money for the American Cancer Society. It was sure to be a great night.
That is, if my team showed up.
This wasn't the first year my friends were on my Relay team. They had all done this event for the past couple of years, and it was always a blast. They always managed to have a good time while honoring those whose lives had been affected by cancer, and by celebrating all the survivors and fighters. It was a giant celebration of life, and it meant so much to me, as I was still fighting the disease, more than 5 years later.
Then why were there only two people from my 10 person team here??
I was getting upset. This wasn’t even the first thing to upset me that day. Earlier, my Mom had driven me to the school – an hour early. Nothing was set up. No one was there except for one organizer, who was just starting to clean the area. Why did Mom drag me there so early? I had other things to do. I had to give a speech that day, and I wouldn’t mind having an extra hour to go over it. But my Mom insisted we stay. So we did – but only because my Mom had the car keys. And what did we do for that hour? We sat. We watched tables being set up. Mom helped. I couldn’t, being a cancer weakling and all. We sat some more after the organizers shooed Mom away. We wasted an entire hour.
But when the hour was up, I had hoped it would get better. My friends were coming!
Little did I know.
I tried calling my friends and teammates, but they all had some crazy excuse. Jackie's mom was sick and she couldn't get a ride there - but when I offered to come get her (after all, there was nothing else for me to do at the moment without a team!), she quickly yelped, "NO! No, no, no, Kristen's going to drive me!" When I pointed out that I had just spoken to Kristen and that Kristen was out at a restaurant somewhere, Jackie replied, "Oh, yeah, when she's done she's coming by and getting me."
Okay.
Zandra said her car broke down. Again with the ride offer, and again I got, "Oh, I'm coming with Jackie." Uhh, Jackie's going with Kristen...later. "Um, yeah, me too!"
Fine.
The others? Excuses at the ready, just as lame.
Whatever.
Later, Kristen, Jackie and Zandra all show up in Kristen's car. Once they got there, Mom stopped by. Mom says something about a red car being in our driveway and blocking my Grandma and Grandpa in, who were there to visit for the weekend.
"Zandra! That sounds like your car! I thought it broke down!" I cried in surprise.
"Oh! Um, yeah, it was starting to act funny right on the highway by your house, so I pulled into the large open space across your house, and your family helped me get it to your driveway so it can stay there for now."
Right.
But someone pulled me by the arm to another group's game, and I was too happy to pay much attention to this weirdness. More people were finally showing up, and this year's event was living up to its predecessors, despite the rain.
After a long time, other teams started packing up and leaving. I realized that it was time to get going, and, on my Mom's suggestion, I invited my friends back to my house to sleepover. Usually the event already is a sleepover, but with the rain, people decided to pack it up instead. My friends were eager to come over, but instead of packing up, they just hung around. What? Why was everyone being so weird?
We had planned that Kristen would drive me home, but I didn't want to go until I knew that everyone was actually coming. Some of these people had never been to my house before and might need directions or something.
"Come on, I have to peeeeeee," Kristen whined to me, pulling on my arm and dragging me towards the exit.
"Kris, we're in our school, go use the bathroom!"
"But I don't like these bathrooms, can't we go to your house?"
"Are you kidding? You use these bathrooms everyday! Look, use the nurse's bathroom, it's a single and it's clean."
"Noooo, your house!"
Suddenly, my friend Meghan came by and pulled me by the arm. Why is everyone doing that to me today?
“Come with me!” Meghan exclaimed, leading me…actually, where was she leading me?
They stopped in the middle of the commons. And stood there.
“Meghan, what the hell????”
Meghan didn’t answer.
People were finally starting to leave to head to my place. And now, apparently, I was not.
“Meghan, we should go, there are people driving to my house right now, and my grandparents are over and probably sleeping, so I should really try to get there first! Plus, Kristen really has to pee and WON’T USE THESE BATHROOMS!” I said with a pointed glare at Kristen, who looked back sheepishly.
But then Meghan grabbed me by the shoulders and had me in a kind of hug-lock so that I couldn’t really escape. As I struggled to get free, Meghan went, “Kristen, go drive to her house, I’ll drive her back!”
Kristen ran out the door.
There were only a few people left lingering in the Commons – including me and Meghan.
“MEGHAN! LET ME GO! We NEED to get back! We’re not even doing anything here! What are you doing??” I yelled.
“Hmmm….oh, fiiiiiiine,” Meghan said slowly as she watched the last of the people in the Commons file out. “Let’s go.”
They headed into Meghan’s big SUV – one of the only cars left in the parking lot – and drove off down the small highway that takes us to my house. This being a highway – albeit a small one – the speed limit is 50 mph. Meghan was driving 35 mph.
“MEGHAN. What part of ‘I need to get there fast’ don’t you understand???” I yelled.
“Oh, I just feel so calm and relaxed, and there’s no one around, we’re fine!” she replied easily.
“Most teenagers go FASTER when there’s no one around, did you know that, Meg? In fact, FASTER would be a good idea right now. You don’t even have to go past the speed limit if you want to, but the speed limit might be a good idea. You’ll have to go FASTER to get up to that though! So how about going FASTER?”
Meghan sang along with the radio.
The normally 5-minute drive took quite a bit longer than that, and every extra minute just about killed me
“Great,” I thought, “I’ve survived cancer for 5 years and now I’m about to be killed by impatience – after Relay for Life. Anyone else see the irony, or is this just chemo brain?”
We finally got there. But, just as I feared, every single car is already parked in front of my house – and the carriage house, where they were going to sleep, is dark. Where is everyone?
Meghan rushed out the car door and ran into the darkness towards the house, leaving me with the job of carrying all of our crap inside. This crap includes paper towels, Relay t-shirts, and a purple boa I won. Lacking 3 hands, I wrapped the purple boa around my neck and grabbed everything else into my arms, then made my way to the still-silent carriage house. On the way, I passed the back entrance to my actual house, where I saw my mom and grandparents standing on the back porch.
“Oh, Mom, I’m so sorry, did everyone wake you guys? I was trying so hard to get everyone here quietly – you woudn’t believe all the crazy stuff that just happened – by the way, have you seen Meghan, I have to strangle her – sorry Grandma and Grandpa – “
“Wait, hon, wait, wait, you didn’t wake us, we just stayed up and watched a movie, it’s fine, then we came out here for some air. Come inside for moment, put that stuff down,” Mom said, gesturing towards the back door.
“But where is everyone?” I started to say, but – wouldn’t you know it – I got taken hold of by the arm and led inside.
We all walked through the back door into the kitchen, and as we stepped through the kitchen towards the middle room, I saw, first, Kristen, standing straight in my line of view. Kristen’s cheeks were flaming red, something they do whenever she’s embarrassed or extremely excited or hiding a secret. As we get closer, I could see more friends standing crowdedly in the tiny room, and there was something that astounded me even more than that: cranes. Paper cranes, origami cranes, everywhere, hanging from the ceiling, big ones, little ones, a huge one sitting on the cabinet, the rest dangling from fishing line hung from one end of the room to the other. Four long strands crisscrossed the room, hung from the corners and the middle on little hooks nailed in for just this purpose. A hundred other lines hang from these four long strands, each one carrying ten origami cranes separated by a shiny plastic bead.
My mouth hung open, somewhere between a wide-mouthed gape and a humongous grin. I was still carrying the paper towels and t-shirts and wearing the big purple feather boa. I looked ridiculous. My room looked incredible. My friends looked at me, smiling and laughing and clapping.
“Look what we did,” they said.
“I can see,” I replied when I regained speaking skills.
When I went back to being stupefied, they explained everything.
More than a month beforehand, I had been told by my doctors that I had a sudden growth spurt – but it was not the kind I was hoping for. It was of my cancer cells. They put me on a heavier chemotherapy and I had to stop attending school, finishing my work at home instead. While this was going on, one of my friends at school decided to do something for me. She organized a school-wide creation of 1,000 origami cranes. She taught friends how to fold a single square sheet of paper into a beautiful work of art. These friends taught other friends who taught other friends and so on. Pretty soon students and even teachers were in on this plan, making them during art classes or breaks, even sometimes during class. When some of my friends went on their annual Band Trip, they even made cranes out of ripped-up Busch Gardens maps!
The weekend of the Relay for Life, people willingly gave away their free Saturday to go to school and string these cranes on the fishing line, tying a knot in the bottom and adding a bead, crane, knot, bead, crane, knot, bead, crane, etc. for hours. They even came up with an ingenious way of transporting these creations to my house later on.
But how did they get these hanging in my room without me knowing?
Well, my Mom was in on it, certainly. Even my grandparents knew. Remember how Mom got me to the Relay an hour ahead of time? Turns out that was because my friends were due to show up at my house at that time and hang those cranes. While I was sitting in my high school, staring at nothing, tons of my friends were in my house, nailing hooks and stringing paper birds all over my room.
Can’t say I expected that.
They didn’t expect it to take so long, either. They thought for sure they’d be done in an hour, and then be able to head right to Relay.
They thought wrong.
Just in case you want to know, it takes more than an hour to hang up 1,000 cranes. But my friends were determined to finish it – they had to finish it – before I got home at the end of the night, so they would finish it…even if that meant they had to miss the beginning of Relay.
That’s right. While I was wondering where the rest of my team was and making phone calls, they were all there in my own house, together, finishing their project. Those lame excuses? They were truly lame excuses. Kristen’s family never went out to dinner; Jackie’s mom wasn’t sick; Zandra’s car was perfectly fine sitting in our driveway, where she drove it to hang those cranes! Meghan wasn’t crazy; she was trying to make sure everyone got to the house and took their spots before she got there. Kristen didn’t have to pee and hadn’t developed a sudden phobia of the mostly clean school toilets; she was just trying to get out of there and push me off onto Meghan. They all had a reason for their madness; there was just no way I could have known it!
So why 1,000 cranes, anyway? A very nice plaque that now hangs on my wall explains: “Japanese legend has it that the folder of 1,000 cranes gets a wish. We’ve made 999; the 1,000th one is for you – it’s your wish!”
Right then and there, with everyone staring at me, they taught me to make an origami crane. It now hangs above the doorway to the kitchen, right at the top and in the center.
One thousand paper cranes. There are one thousand paper cranes flying around my room. There are people who love me enough to fold one thousand paper cranes.
How could life be any better?
"If I could take this from you, I would, in a heartbeat. We love you so much," he was telling her.
She was nodding. She kind of always knew, didn't she?
"Cancer," the doctor said.
Her dad was still talking.
She was twelve.
...................................................................
"What do you mean, your parents decided to go to dinner and drag you with them? Kristen, it's Relay for Life! They know about it! They know I'm the team captain and that you're on the team and that you're my best friend and that this means a lot to me! Why would they do that?" I yelled into the phone, pacing back and forth in my high school Commons room. Rain had forced the big cancer fundraiser event indoors this year, but it wasn't stopping the spirits of the people involved. People still had games and activities set up, and team members were dressed up and walking the track to raise money for the American Cancer Society. It was sure to be a great night.
That is, if my team showed up.
This wasn't the first year my friends were on my Relay team. They had all done this event for the past couple of years, and it was always a blast. They always managed to have a good time while honoring those whose lives had been affected by cancer, and by celebrating all the survivors and fighters. It was a giant celebration of life, and it meant so much to me, as I was still fighting the disease, more than 5 years later.
Then why were there only two people from my 10 person team here??
I was getting upset. This wasn’t even the first thing to upset me that day. Earlier, my Mom had driven me to the school – an hour early. Nothing was set up. No one was there except for one organizer, who was just starting to clean the area. Why did Mom drag me there so early? I had other things to do. I had to give a speech that day, and I wouldn’t mind having an extra hour to go over it. But my Mom insisted we stay. So we did – but only because my Mom had the car keys. And what did we do for that hour? We sat. We watched tables being set up. Mom helped. I couldn’t, being a cancer weakling and all. We sat some more after the organizers shooed Mom away. We wasted an entire hour.
But when the hour was up, I had hoped it would get better. My friends were coming!
Little did I know.
I tried calling my friends and teammates, but they all had some crazy excuse. Jackie's mom was sick and she couldn't get a ride there - but when I offered to come get her (after all, there was nothing else for me to do at the moment without a team!), she quickly yelped, "NO! No, no, no, Kristen's going to drive me!" When I pointed out that I had just spoken to Kristen and that Kristen was out at a restaurant somewhere, Jackie replied, "Oh, yeah, when she's done she's coming by and getting me."
Okay.
Zandra said her car broke down. Again with the ride offer, and again I got, "Oh, I'm coming with Jackie." Uhh, Jackie's going with Kristen...later. "Um, yeah, me too!"
Fine.
The others? Excuses at the ready, just as lame.
Whatever.
Later, Kristen, Jackie and Zandra all show up in Kristen's car. Once they got there, Mom stopped by. Mom says something about a red car being in our driveway and blocking my Grandma and Grandpa in, who were there to visit for the weekend.
"Zandra! That sounds like your car! I thought it broke down!" I cried in surprise.
"Oh! Um, yeah, it was starting to act funny right on the highway by your house, so I pulled into the large open space across your house, and your family helped me get it to your driveway so it can stay there for now."
Right.
But someone pulled me by the arm to another group's game, and I was too happy to pay much attention to this weirdness. More people were finally showing up, and this year's event was living up to its predecessors, despite the rain.
After a long time, other teams started packing up and leaving. I realized that it was time to get going, and, on my Mom's suggestion, I invited my friends back to my house to sleepover. Usually the event already is a sleepover, but with the rain, people decided to pack it up instead. My friends were eager to come over, but instead of packing up, they just hung around. What? Why was everyone being so weird?
We had planned that Kristen would drive me home, but I didn't want to go until I knew that everyone was actually coming. Some of these people had never been to my house before and might need directions or something.
"Come on, I have to peeeeeee," Kristen whined to me, pulling on my arm and dragging me towards the exit.
"Kris, we're in our school, go use the bathroom!"
"But I don't like these bathrooms, can't we go to your house?"
"Are you kidding? You use these bathrooms everyday! Look, use the nurse's bathroom, it's a single and it's clean."
"Noooo, your house!"
Suddenly, my friend Meghan came by and pulled me by the arm. Why is everyone doing that to me today?
“Come with me!” Meghan exclaimed, leading me…actually, where was she leading me?
They stopped in the middle of the commons. And stood there.
“Meghan, what the hell????”
Meghan didn’t answer.
People were finally starting to leave to head to my place. And now, apparently, I was not.
“Meghan, we should go, there are people driving to my house right now, and my grandparents are over and probably sleeping, so I should really try to get there first! Plus, Kristen really has to pee and WON’T USE THESE BATHROOMS!” I said with a pointed glare at Kristen, who looked back sheepishly.
But then Meghan grabbed me by the shoulders and had me in a kind of hug-lock so that I couldn’t really escape. As I struggled to get free, Meghan went, “Kristen, go drive to her house, I’ll drive her back!”
Kristen ran out the door.
There were only a few people left lingering in the Commons – including me and Meghan.
“MEGHAN! LET ME GO! We NEED to get back! We’re not even doing anything here! What are you doing??” I yelled.
“Hmmm….oh, fiiiiiiine,” Meghan said slowly as she watched the last of the people in the Commons file out. “Let’s go.”
They headed into Meghan’s big SUV – one of the only cars left in the parking lot – and drove off down the small highway that takes us to my house. This being a highway – albeit a small one – the speed limit is 50 mph. Meghan was driving 35 mph.
“MEGHAN. What part of ‘I need to get there fast’ don’t you understand???” I yelled.
“Oh, I just feel so calm and relaxed, and there’s no one around, we’re fine!” she replied easily.
“Most teenagers go FASTER when there’s no one around, did you know that, Meg? In fact, FASTER would be a good idea right now. You don’t even have to go past the speed limit if you want to, but the speed limit might be a good idea. You’ll have to go FASTER to get up to that though! So how about going FASTER?”
Meghan sang along with the radio.
The normally 5-minute drive took quite a bit longer than that, and every extra minute just about killed me
“Great,” I thought, “I’ve survived cancer for 5 years and now I’m about to be killed by impatience – after Relay for Life. Anyone else see the irony, or is this just chemo brain?”
We finally got there. But, just as I feared, every single car is already parked in front of my house – and the carriage house, where they were going to sleep, is dark. Where is everyone?
Meghan rushed out the car door and ran into the darkness towards the house, leaving me with the job of carrying all of our crap inside. This crap includes paper towels, Relay t-shirts, and a purple boa I won. Lacking 3 hands, I wrapped the purple boa around my neck and grabbed everything else into my arms, then made my way to the still-silent carriage house. On the way, I passed the back entrance to my actual house, where I saw my mom and grandparents standing on the back porch.
“Oh, Mom, I’m so sorry, did everyone wake you guys? I was trying so hard to get everyone here quietly – you woudn’t believe all the crazy stuff that just happened – by the way, have you seen Meghan, I have to strangle her – sorry Grandma and Grandpa – “
“Wait, hon, wait, wait, you didn’t wake us, we just stayed up and watched a movie, it’s fine, then we came out here for some air. Come inside for moment, put that stuff down,” Mom said, gesturing towards the back door.
“But where is everyone?” I started to say, but – wouldn’t you know it – I got taken hold of by the arm and led inside.
We all walked through the back door into the kitchen, and as we stepped through the kitchen towards the middle room, I saw, first, Kristen, standing straight in my line of view. Kristen’s cheeks were flaming red, something they do whenever she’s embarrassed or extremely excited or hiding a secret. As we get closer, I could see more friends standing crowdedly in the tiny room, and there was something that astounded me even more than that: cranes. Paper cranes, origami cranes, everywhere, hanging from the ceiling, big ones, little ones, a huge one sitting on the cabinet, the rest dangling from fishing line hung from one end of the room to the other. Four long strands crisscrossed the room, hung from the corners and the middle on little hooks nailed in for just this purpose. A hundred other lines hang from these four long strands, each one carrying ten origami cranes separated by a shiny plastic bead.
My mouth hung open, somewhere between a wide-mouthed gape and a humongous grin. I was still carrying the paper towels and t-shirts and wearing the big purple feather boa. I looked ridiculous. My room looked incredible. My friends looked at me, smiling and laughing and clapping.
“Look what we did,” they said.
“I can see,” I replied when I regained speaking skills.
When I went back to being stupefied, they explained everything.
More than a month beforehand, I had been told by my doctors that I had a sudden growth spurt – but it was not the kind I was hoping for. It was of my cancer cells. They put me on a heavier chemotherapy and I had to stop attending school, finishing my work at home instead. While this was going on, one of my friends at school decided to do something for me. She organized a school-wide creation of 1,000 origami cranes. She taught friends how to fold a single square sheet of paper into a beautiful work of art. These friends taught other friends who taught other friends and so on. Pretty soon students and even teachers were in on this plan, making them during art classes or breaks, even sometimes during class. When some of my friends went on their annual Band Trip, they even made cranes out of ripped-up Busch Gardens maps!
The weekend of the Relay for Life, people willingly gave away their free Saturday to go to school and string these cranes on the fishing line, tying a knot in the bottom and adding a bead, crane, knot, bead, crane, knot, bead, crane, etc. for hours. They even came up with an ingenious way of transporting these creations to my house later on.
But how did they get these hanging in my room without me knowing?
Well, my Mom was in on it, certainly. Even my grandparents knew. Remember how Mom got me to the Relay an hour ahead of time? Turns out that was because my friends were due to show up at my house at that time and hang those cranes. While I was sitting in my high school, staring at nothing, tons of my friends were in my house, nailing hooks and stringing paper birds all over my room.
Can’t say I expected that.
They didn’t expect it to take so long, either. They thought for sure they’d be done in an hour, and then be able to head right to Relay.
They thought wrong.
Just in case you want to know, it takes more than an hour to hang up 1,000 cranes. But my friends were determined to finish it – they had to finish it – before I got home at the end of the night, so they would finish it…even if that meant they had to miss the beginning of Relay.
That’s right. While I was wondering where the rest of my team was and making phone calls, they were all there in my own house, together, finishing their project. Those lame excuses? They were truly lame excuses. Kristen’s family never went out to dinner; Jackie’s mom wasn’t sick; Zandra’s car was perfectly fine sitting in our driveway, where she drove it to hang those cranes! Meghan wasn’t crazy; she was trying to make sure everyone got to the house and took their spots before she got there. Kristen didn’t have to pee and hadn’t developed a sudden phobia of the mostly clean school toilets; she was just trying to get out of there and push me off onto Meghan. They all had a reason for their madness; there was just no way I could have known it!
So why 1,000 cranes, anyway? A very nice plaque that now hangs on my wall explains: “Japanese legend has it that the folder of 1,000 cranes gets a wish. We’ve made 999; the 1,000th one is for you – it’s your wish!”
Right then and there, with everyone staring at me, they taught me to make an origami crane. It now hangs above the doorway to the kitchen, right at the top and in the center.
One thousand paper cranes. There are one thousand paper cranes flying around my room. There are people who love me enough to fold one thousand paper cranes.
How could life be any better?
What I Hope To Accomplish With This Blog
I hope to post at least once a week, and I want to post both new and old things I've written or have yet to write. There's probably not going to be much of an order to these posts; no chronological timeline for me! I write bits and pieces all the time, somewhat memoir-ish, but they often skip from one year to another, so working chronologically just wouldn't make sense. Plus, I remember certain things better than others - you can blame chemo brain and multiple heavy-duty drugs! I also just like writing based on what I feel right now, and sometimes that corresponds with something that happened four years ago, and other times it corresponds with something that happened yesterday. Sometimes I even like to be somewhat normal and write about my day, or my plans for the future. It's true, I do have normal moments! But I do hope to have a post up soon that will give a rough timeline of everything I've been through - and I'm using the word "everything" very loosely here.
Mostly, the posts will be snippets of things I've experienced, and things I've learned. There are many, many stories, some amusing, some upsetting, and some uplifting. I tell them to my friends all the time, and I finally feel like I really need to write them down. They may not always be happy stories, but they are my stories.
Who Am I?
So, who am I? This is actually a question I think I have the answer to. I’m Hope – I’m me, and I’m pretty happy with that.
I am 19 years old, 4’10” in my favorite (at the moment!) pair of heels, 75 lbs, and currently bald, although there’s a bit of fuzz starting to come back. I guess none of this may be too typical of a normal 19-year-old, but hey, I never claimed to be a normal 19-year-old. I have many of the same interests as any other 19-year-old female, but I also have something else many of those same teenagers lack: cancer.
It started when I was 7. I would complain to my parents about feeling sick, but it wasn’t very frequent yet. Plus, it usually happened at night, and I was notorious for trying to get out of my bedtime! But then it started to become more frequent. I would have bad stomachaches and I threw up a lot. By the time I was 10, I was starting to feel sick almost every day. There were foods I couldn’t stand to eat. I couldn’t gain weight. I was 60 lbs.
I was taken to many doctors and never received any answers. Some said it was all psychological – but I continued to throw up. I even went to psychologists, and they couldn’t find anything wrong with me either. I went to nutritionists and food therapists – but the weight continued to drop.
At age 11, I was in physical pain every single day, and I was very weak. I continued to go to school and see friends – almost all of whom didn’t know anything was wrong because I was very good at hiding it – but I did have to quit two of my favorite activities: soccer and horseback riding. I saw more doctors, who often threatened to admit me to eating disorder clinics because they couldn’t come up with a better reason for my extreme weight loss. They refused to believe that I ate without intentionally throwing up, and they even blamed my parents for not noticing the “real issue”.
Then finally we found a pediatrician who believed us when we said that there was something physically wrong. He agreed to send me off for more extensive medical tests, including a colonoscopy/endoscopy, x-rays, and an ultrasound.
It was the ultrasound that did it. Maybe that’s why I’ve never liked getting ultrasounds, even though they’re supposed to be one of the easier tests. No, actually, that’s probably not it; I definitely don’t like them because I’m the most ticklish person in the world and having that wand rolled over my stomach is torture for me. But maybe they’re even worse because my very first one resulted in the worst news I’ve ever received.
We didn’t get those results immediately. The doctor is given the results first, to go over them. Since then we have learned that, generally speaking, the longer it takes for you to get the results, the worse the news. If it’s bad news, the doctors have to consult with other doctors and specialists to make sure they’re reading it right, and they usually are.
Our pediatrician called us and told us to head to the hospital. He only told us that they found something on the ultrasound and that we should get it checked out at the hospital – but not to expect anything good. We left that night. I didn’t return again for quite a while.
After a biopsy of the mass, we were told it was cancer. My parents were crying while they tried to explain it to me. I understood. I also didn’t cry. There was sadness, and fear, but there were also two things you might not expect: relief, and hope. Relief, because finally there was a name to what I had. It was not an eating disorder; it wasn’t all in my head; it was real. We didn’t yet know what kind of cancer exactly, but cancer was still a name, and things with names can be treated. And the hope – I don’t know where that came from. Where does hope ever come from? I don’t really know if it’s something that’s always there, or if it springs up with the bad. Or maybe, because I AM Hope, it’s something I in particular just can’t escape! But I think there’s more to it than that. In any case, it was there, and I felt like I could keep going. That feeling really comes in handy.
Eventually, we learned it was neuroblastoma. “Neuroblastoma.” What the heck is that?? Even today, I’m not sure I can completely answer that. I do know that it is a cancer of the nerves, not the brain, as you might think from the “neuro-” part. What it meant for me was that there was a very big tumor – the size of a grapefruit – mostly in my abdomen, pressing against many of my organs. There were many small bits of cancer in other parts of my body too: legs, back, neck. I was kind of littered with it.
Since then, I’ve been through many, many, many treatments. I don’t think I could even write them all down. There’s been chemotherapy and experimental treatments and radioactive medicines and oral chemo and more surgeries than I could ever remember. I still have to work to keep up my weight, and it’s not as simple as “eat a donut!” Because of the way the cancer was pressed against so many of my organs, pretty much everything inside me is all screwed up. I literally can’t seem to gain weight. My body doesn’t seem to absorb fat right. I also didn’t go through puberty because of my low weight and the many chemos I have had. That’s why I’m still the same height I was in third grade. I lost a good portion of my hearing from a certain chemo that destroys the hair in your ears that feels vibrations. I will never be very strong and I will always have to work on my stamina and energy. But even with all that, I still feel good. 75 lbs. is better than the 60 lbs. I used to be. I can swallow pills now. I am no longer scared of needles. And I know that I am stronger in spirit and mind than I ever thought possible.
So, who am I? I’m me: 19, short, skinny, bald, and living with cancer, but I am really truly living.
Monday, October 12, 2009
The Beginning
It started with communication.
Or, rather, with my Principles and Theories of Communication class at Marymount Manhattan College. We kept a blog as a running class assignment; almost every week we were required to answer a question or type a response on our blogs, and comment on another student's. This showed me how easy this blogging thing is. I could handle it. It's all good.
Then I started my own blog, free of requirements. I used it only to post poetry or prose I wrote, for friends who wanted to read it. That was all.
Next came online classes. I had to drop out of Marymount and start taking online college courses at Fairleigh Dickinson because of my cancer treatments. I couldn't deal with the normal schedule of a regular college because I had no idea when I would be sick. I get sick often, and I miss too many classes. Plus, I had a new treatment coming up, and I didn't know how I would react to that one. Much safer to try something new - online classes. However, I signed up late, so I was stuck choosing from the leftovers, classes that hadn't yet become full. I wasn't upset though; there were still a bunch of interesting ones. Like this one: Blogging! I signed up immediately.
Then I suddenly just couldn't stop writing. I've always loved writing, and I keep a journal right next to my bed for any late-night inspiration. Usually that's the only time I have inspiration, actually. But suddenly I was on a roll. I wrote in that journal at all times of the day, and when I realized I needed a way to write faster and longer, I switched to my computer, typing out stories in Microsoft Word for Mac.
I posted some of these stories on my Facebook account. I let family and friends read others. Everyone encouraged me to do something. My aunt, a Huffington Post blogger, told me I should start a blog. My online class was telling me I would have to start a blog. My mom supported the same idea.
So here I am now. Blogging. It is an account of my life, my thoughts, and my feelings, as a 19-year-old girl, fighting cancer for 6 years. It is the accumulation of my time and my self. It won't be in order. My life isn't always in order. I may remember things differently than others - I spent a portion of my life suffering from something oncologists like to call "chemo brain"! But these are all true feelings. Maybe you haven't experienced the same events I have, but I'm sure we've felt some of the same feelings and learned some of the same things. I just like to do things differently. ;)
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