Tag Archives: childhood cancer

“I feel bad.”

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It’s late and I should be sleeping, but there are just moments in life that ask to be written about.

Tonight was a Brighter Tomorrows night. Those who know me know this is my favorite night of life, every single time it happens. Those who don’t know me now know that it’s my favorite. Moving on.

We had 37 kids RSVP. That’s amazing to me. I don’t want kids to have cancer, but if they do have cancer, I do want them to come to Brighter Tomorrows to play games with us, to laugh with us, and to have summer camp with us once every month.

One conversation (among the many that are seriously the most inspirational things in life) tonight struck me and just keeps playing over and over again in my head. That’s why I am writing and not sleeping.

There is a 7 year old boy with Ewing’s Sarcoma, a rare form of bone cancer. I know most of his story because I’ve read it, met his family, talked with others who know him. But he doesn’t know that. He just thinks I know him for him. So we’re making some crafts and I mention that he still has his port accessed (most of the time kids don’t leave with a line in if they are just going for chemo) and I ask him why that is. He tells me that it’s for radiation and goes on to explain the burns that he has from it.

He rolls down the edge of his comfy pants, and I see the red line where that burn starts. I ask him casually if it hurts (because to him, cancer is casual and a part of life…I remember) and he says “Nope, not at all.” I’m sure at some points it does because his skin is all a deep, deep red and has a rough look to it, but he gave me the right now answer which is technically what I asked for. (Kids are amazing and I love them.) Then I go on to explain to him that I had cancer as well. I explain my leg and why I didn’t need any radiation and why he does but how we are similar. And then he listens and he and his brother start asking questions.

“Do you have a scar?”
“Yes, one here and here and here.”
“How did they hook it back on?”
“With a plate and screws.”
“So you have metal on you?”
“Well, sort of. Technically I have metal in me.”
“Does that hurt?”
“Nope, not at all, and it keeps my leg on there safely.”

We giggle.

He persists…

“Does it hurt to wear your leg?”
“Nope, it’s made just for me.”
“So your foot is just in there like that, huh?”
“Yes, just like you’re doing it!”
“Wait, so you lost your hair!?”
“I sure did.”

He stops.

“I feel so bad,” he says.

I tell him not to. He tells me he feels bad for me. I tell him I’m okay and everything is good and life is great. He insists that he feels bad for me.

Life is about perspective, my friends. Look without yourself.

…because love wins.

The 25th year!

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I think I’ve evaluated that life is often a walk to find the line between remaining optimistic and leading, and being jaded and hiding away. When I was 18, I was like most 18-year-olds and thought I knew just about everything that there was to know. And I did know enough to live through college, collect some awesome friends, do some jobs I love and decide on a wonderful boyfriend. But I certainly didn’t know everything.

It’s amazing to watch little kids look up to me and other people my age. I remember the first time that I realized they expected me to know everything for them. It’s amazing – and somewhat terrifying. But it’s a wonderful thing how loving someone and leading someone teaches you to make up your mind and be what you know you should be. That was one of the most memorable catalysts for growth in these 7 years.

So now I’m 25. I learned a lot since age 18. Here are 25 of those things.

  1. Eating healthy isn’t a fad. It decides an awful lot about how you succeed in life.
  2. You don’t know everything. Neither to do I.
  3. Apologies are real, and if they work, that’s awesome. But sometimes they don’t, and that’s likely not your fault.
  4. You never, ever, need to apologize for who you are. What you have done, yes, but who you are – no. Don’t. Ever.
  5. Mental illnesses suck, and are real, but also don’t decide a person’s character.
  6. I love Justin Bieber.
  7. God can take it when you’re angry at Him.
  8. You really aren’t likely going to know what God is always doing, but eventually you’ll make it through.
  9. Dating people is fun. Don’t be afraid to do that. Heatbreak heals. You’ll grow a lot.
  10. You don’t have to be friends with people that you don’t like.
  11. It’s okay for you to say no and have boundaries.
  12. LOVE YOURSELF. Do things that make you happy.
  13. Never stop dancing. Especially when you’re sad.
  14. Your mom and dad are people. They are different than you, and make mistakes. Not everything is their fault.
  15. Changing poopy diapers is a life skill everyone should have.
  16. Roommates found on Craigslist can be character building.
  17. Listen first. And sometimes just listen, if you have no idea what to say. You don’t always need to know what to say.
  18. Don’t walk away in the middle of an argument.
  19. Arguments and conflict are okay – learn how to fight fair and express emotions.
  20. People who look awesome sometimes make big mistakes. And things are redeemable.
  21. Driving with the windows down doesn’t get old.
  22. Smile wide, and often.
  23. Say what you mean. Try to figure out what you mean.
  24. God holds me so so so close. And I am so important.
  25. I am valuable, and should be treated as such. So are you.

So there you go. I have lots of cool things planned for the 25th year of my life. And Justin Bieber released a song for my birthday. What a guy. Have a wonderful day, lovelies!

…because love wins.

Why you should let people go.

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A little while ago there was an app called “Who Deleted Me?” It was designed by Anthony Kuske, whose Twitter profile says he’s from the UK and “makes websites and stuff.” This app was one of those things. The purpose of said app was to do just that – tell people who had deleted them on facebook.

Facebook is a weird, strange, awesome, and dumb thing all at once. We get to connect with anyone virtually anywhere around the world. But at the same time, we can also see all kinds of things that are left to our own imagination. Because let’s be honest – no one is as happy as their profile picture all of the time. And thinking they are can ruin your life.

So then what do we do when one of our used-to-be best friends decides they’re done and we’re not friends anymore? And then what happens when you find that out through a crazy little app? Well, if you cared, it probably sucks pretty badly. If you don’t, you’ll probably have an easier time with what I’m about to say.

If someone doesn’t want to love you, or be your friend, or doesn’t build you up even when they are your friend, it’s time to let them go. Yeah, not that easy, right? Well, it sort of is.

Why would you want to be friends with an enemy you have? Would you call up the kid who picked on you in second grade and ask them to be your best friend? No, I certainly don’t think you would. Sorry to say, but when your friend walked away (and in a dramatic way like a facebook delete to prove a point without a real conversation) they entered the same category. Either they didn’t appreciate you, or they think they will have a better life elsewhere.

I’ve had people die in my life, and I’ve had people walk away. When I was younger, both destroyed me. Now, only death hurts me. Because I only keep camp with the people who I really know love me and who will let me love them back. And it’s okay to know that someone walking away isn’t your fault. It’s the walking person’s fault.

So, if they walked away, don’t chase them. And don’t let them come back. If they cared, and they were someone to want around, they never would have left to begin with. You’re worth more than being someone’s option. They chose to have you let them go, so let them go. And don’t apologize for knowing your worth.

Strong is beautiful – you are beautiful. Smile and do something you love. Because you weren’t worth letting go.

quote

…because love wins.

17 things I learned in the 17 years since I was diagnosed with childhood cancer.

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March 11, 1998.

We never forget the days that change our lives. We never forget the moments that change our lives, as a matter of fact. I had one of those on that day. I haven’t forgotten it. I never will.

I had been walking with a limp for about 3 weeks. I was a totally healthy, vivacious, excited little girl. Here’s a picture!

Age 6. :)

Age 6. 🙂

See? Right? Totally healthy. But that knee pain I had wouldn’t go away.

On March 11th, 7:35am, I was walking to the school bus. About halfway there, I fell down. There was a serious sharp pain in my left knee. I remember thinking I didn’t want to look dumb (classic 3rd grade thought process) and it hurt. A lot a lot a lot. The bus was waiting, and it was a shorter distance to get on the bus than to go home, so I got on the bus. I went through my day, limping along, trying not to walk. I have no idea how I was even moving at all.

We had an appointment scheduled with my family doctor that afternoon. When I walked into the office, he told me that he hadn’t seen anyone ever limp like that. The reason? My femur was shattered. The reason?

Bone cancer.

I was 7 years old. I played basketball and giggled and tried to avoid going to sleep at night.

Cancer?

CANCER?

The next day started 49 weeks of chemotherapy, the removal of my leg and a procedure called Rotationplasty (You can learn about that here.) and way too many sharp needles, anesthesia and brokenhearted moments than I can consciously remember or that I should have had to go through as a human being, regardless of age.

So, in honor of the days that I have lived (happily) since then, I want to share with you 17 things that I have learned since March 11, 1998.

1. Life is short. 
Not in the cliche, “Yeah, people say that all the time…” way, but in the “Don’t wait until someone you love is dead in a car accident before you figure this out.” way. Seriously, it can all end right now, and you need to not worry what everyone thinks of you or feel bad when people don’t like you. Choose the way you want to live those short days and then do that. Live, please.

2. Kids die. 
And it sucks. It sucks way worse than someone who has lived to 80 years-old dying. I’m not saying any one life is more important than another, but I am telling you that burying my best friends (4 of them) by the age of 12 is horrendous and wrong. It’s so so so so wrong. Parents should not have to live all the years their kids were supposed to without them. Which leads me to…

3. There is a pathetic amount of money allotted for childhood cancer research. 
I had 49 weeks of poison (chemotherapy) that potentially ruined my heart, potentially took my ability to have children, and certainly made me throw up burning vomit way too many times. The saddest part is that it’s been 17 years and kids today are still taking the exact same awful drugs. With an 80% survival rate. (Which I would say is definitely much lower than 80.) And they haven’t figured out why a lot of my friends never lived and I did. There aren’t many people who took this stuff and grew into adulthood, so there’s not really a way for me to know what my future related to this stuff will bring. Please help. Follow this facebook page and do what it says: TheTruth365.

4. Haters are gonna hate.
There is a saying that goes something like, “In the world people are going to hate you, and people are going to love you, and none of it has anything to do with you.” People make bad choices when they’re mad or scared or stressed. (Thanks, Frozen!) So be graceful and don’t worry too much.

5. God is everywhere. 
You just have to let yourself listen. Even when the truth hurts. Especially when the truth hurts.

6. Illness isn’t terrifying.
Sometimes it is, I suppose, but for anyone who is the friend of someone with a chronic or serious illness, don’t leave said person or family alone. And don’t be upset if they want space or you say the wrong thing. But answer the phone at 2am, expect nothing, give real hugs, and be willing to be whatever they need.

7. You should love yourself. 
There is a complex that tends to come after someone has been through a near-death experience which includes putting everyone else first. And then putting everyone else first until that person is basically dead from never paying attention to themselves. So it’s good to take care of yourself. Paint and laugh and don’t let people use you. You deserve the best too.

8. I am handicapped. 
Lots of people are. In fact, we all are – face the fact. We all have something really wrong with our broken souls. And I think that’s a really important thing to remember when someone can’t help themselves and you have the opportunity to love them.

9. It’s not easy to talk about pain. 
I’m a professional speaker, but that doesn’t mean that it’s easy to talk through the agony that I experienced. There’s this fine line between people wanting to hear the truth and people thinking you’re asking for pity by sharing what you’ve felt. Pay no attention to those people. If you have pain, talk about it. If they choose not to listen, they lose.

10. People won’t always leave, and they won’t always leave you.
There’s my greatest fear. Now you know that. (Yay vulnerable!) I’m sure this grew from holding my friends’ hands while they died and thinking I would never be fully understood again, but in the years since that and some wonderful people in my life, I have learned that people won’t always leave. And I have learned that some people really really want to stay and love me if I let them be inside my heart. Give people a chance.

11. Healthy food isn’t just a fad. Tubing 2
Having a life threatening illness was pretty awful. But it also benefited me in great ways. Because I don’t like toxins because of that experience, I avoid them. And I am pretty particular about taking care of myself with what I put inside my body. And I know I live a more full, happier life because of it. Eat less Doritos and more broccoli. It’s worth it!

12. Downtime is not wasted time.
I laid in my bed for a really long time when I was sick. Like, about a year. And it’s clear that that time has not been wasted, even though I was doing nothing for 49 weeks. You’re human. Slow down. Life will come to you.

13. Sometimes hope just doesn’t feel real. 
There will be times in your life where you can’t hope. Where you realize that the thing that you have been hoping for for so long just isn’t going to happen. And that’s okay. Give up, cry, get mad, do whatever you need to do. Just because we don’t think there is hope doesn’t mean there isn’t. And it doesn’t mean that the days won’t get brighter again. They will.

14. Tie your brain to your heart. 
If you want to do something that really helps people, don’t just dream. Figure out what skills you need to tangibly do the work. For example, if you want to travel the world and feed homeless, start learning languages now. If you want to start a business, learn how to start a business. And then put your heart into your intellect.

15. Don’t take boredom for granted. 
I remember being 15 and telling my parents I was bored. But then I realized that I may be bored because my life is just okay at that time. And it’s not falling apart. And that means there’s goodness – and that’s not boring at all.

16. Bad things can still be bad years later, but they don’t have to rule you. 
I realize that there are some things from cancer which totally left me with PTSD. That’s the reality for my life, and I’ve accepted it. That’s pretty lame, but so are tsunamis, and I haven’t been through one of those. And some other people have to accept them in their lives. So it’s okay to not like things that happened to you. But that doesn’t mean they are in your now, or that they will take you down. Nah, there’s always healing, and always growth. And you’re good now. Just learn and live.

17. Jesus loves you. Jesus
I have tried this one out. I have searched the depth of my heart and society many times. I have watched people die, kids without parents in hospitals, and kids around the world who have no medical care and die just because of that. And there is still love – and love is the currency we should really use. Jesus is the only way to God, and there is one God, and He is Jesus’ father. And you know what? Whether you know it or not, He loves you. And He’s going to come back. Don’t wait to talk to him until your life doesn’t make sense anymore. Someone will always, always love you.

Here’s to 17 more years!

Love to you all.

…because love wins.

I just want to make you happy.

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I lived so much of my life trying to make other people happy. But, I’ve learned some stuff about that. Well, most importantly, one thing.

I can’t do it.

No matter how many times I tell you that everything is going to be okay, or that it is okay, or that the pain will go away, or that we don’t have to focus on the pain, or that fear is a lie, or that people won’t always ruin your life, or that dreams do come true, you have to choose to believe it.

And sometimes, that stinks.

It stinks that I can’t get you to believe that everything is going to be okay, or that it is okay, or that the pain will go away, or that we don’t have to focus on the pain, or that fear is a lie, or that people won’t always ruin your life, or that dreams do come true. Because you have to choose to believe it.

I’ve lived my way to knowing these things. When I thought it wouldn’t get better, it always did. When it hurt, it always stopped hurting. When I wanted to make the pain go away, but realized I couldn’t heal it, it healed. I learned that people can’t ruin your life if you don’t let them. And I learned that dreams do come true. But they don’t come true the way you think they do.

It’s not that you have to believe that life will be good to make it good. But I will tell you that if you wanted to enjoy your life, man, you should just try to let go. Or, should just stop trying to hold on. Just one minute at a time. Don’t defend yourself. Just smile. One moment at a time.

I wish I could make you happy. But just like that, all I can do is believe what I say myself, and hope that eventually you’ll be able to make yourself happy. I just want you to know that most of life is just you and you, so be happy to spend time with that person.

I’ll be here loving you.

…because love wins.

A confession: I hate that I had cancer.

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When I was diagnosed with cancer as a 7 year old, I learned for the first time that I had no control. I was ripped apart. Emotionally, and physically. The anxiety of every day made it hard to breathe. It made me scared to wake up. Scared to go to sleep. Scared to be alive, but even more scared to die. I would like to say that the happy disposition of who I am today is because of cancer, but I’m sorry to say, that it is not. That’s pretend. At least when it comes to cancer. 

Yesterday I learned something that finally allowed my heart to fall to pieces. Cancer sucked. And it’s good for me to know that cancer sucked. Yeah, in theory I’ve heard that before come from my mouth, but I haven’t yet acknowledged how much it sucked. So here it is. 

The day I was diagnosed with cancer, I became a person that I never wanted to be. I know the feeling of the blood rushing from my arms so well. Every time a doctor walks in. Every time there was a new pain. Losing my breath…knowing that any of those words could be the end of my life. I was 7 years old. I was running around outside, playing, without a care anywhere. And then bam, in one second, it was like someone punched the air right out of me. And to be honest, I’m not sure I’ve ever gotten it back. 

One day after that I had my first surgery. If you ask me what the word, “alone” means to me, I will tell you that it is being wheeled away from my parents and having an anesthesia mask forced upon me while I cried. The tears burning and holding my dad’s hand. For the first time, he couldn’t save his little girl. This monster was so much more than something under my bed. This threatened my life. This took me over, completely.

My hair started to fall out a few days after that. I was crippled into stillness. Crying under the covers while doctors and “friends” who I had hardly ever met came in to visit me. I couldn’t eat. I knew I would never run again. I had already given up. And then we had to shave my head. We had to get rid of the beauty that I was. My smile already started to fade – who could I be? I couldn’t be that beautiful, care-free girl, ever again. Seriously, how to go on? 

And there I sat. I would have died that week of diagnosis if I had the choice. I thought the bad was still to come, but I had no idea how bad. For day after day, I was plagued with wondering if that day would be my last day. I watched my sister fall to the wayside. I’ve spent an entire life subconsciously trying to apologize to her. I could see that my life caused my parents immense pain. That they needed me so badly. And I wanted to do anything I could to give them all of me. And always have since then. 

And while I didn’t know it, that continued. It continued as I put a smile on my face for everyone else. They needed to see the hope, and I had to at least function. People often have said that I am strong. But I am not strong. I say this with tears in my eyes. Cancer has threatened everything about me for years. It’s changed my DNA, my friends, my emotional understanding of the world. Cancer tried to kill me. And while I survived, I did not do so without scars.

I spent a lot of years pretending. Not because I wanted to, but because to survive such intense pain, a person almost has to sometimes. I was a child – how could anyone have told me how to deal with being literally on the brink of death? How could I stand up and pretend it was all good? But I did. Because it was like…I had to. Because I couldn’t stand to look at how hard it was to realize that I could die. At any time. It’s like I have clung to every single moment as though my next breath is the end. It’s like I’ve lived in the middle of a war for the last 16 years.

Today my heart is probably as real and raw as anyone has ever seen. I grew up with some very deep emotional cuts on my heart that came from watching my best friends puff up and die on steroids after years of cancer. Yes, it taught me the value of life. But it also taught me the ravenous pain of this world. It taught me that this is a vicious place, and it taught me to fight back. Yeah, that looked like a smile for a lot of my life, but honestly, it’s been a defense. It’s been me fighting to keep anything and anyone that could ever leave me, out. I didn’t know how to handle that pain again. Most days, I wished that I could have died with them.

I don’t hate life. But I want you to know that being a child in trauma (we all have our own) has given me this deep feeling that it is my job to change the world. That because I have seen the end of life, that it is my job to take this “second chance” and literally save every single one of you. To be the inspiration, the hope.

This past few weeks have brought to light a ton of the pain that I haven’t dealt with from those terrible years. My leg has reminded me every day that those pains were there, and I know that life can always end up really hard. So I try to control. I try to make choices that will keep me safe. But trying so hard has done me no good.

So I want to apologize to each person in my life. Not that anything was my fault…I understand that. But for pretending that I was some super human. That I could do anything, would do anything, and could help anyone. That’s false. I am human too. Very, very human. A human that has reacted from pain, that has defended because of pain, who has kept people out and held onto agony, because I am human.

And I am human. And finally, I realize that looking at how human I am, will be okay. That finally, I can look at this, and let it go. That finally, I don’t have to fight the pain. It’ll come. It’ll go. Cancer didn’t leave me unscathed. There are plenty of issues. But today, I have learned that even if it hurts, it doesn’t always kill you.

So I’m starting over. Cancer sucked. I’m done with it still making me suck. 

I love you all. 

…because love wins. 

I’m only human.

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I can hold my breath. 
I can bite my tongue. 
I can stay awake for days, 
if that’s what you want.
Be your number one. 

I can fake a smile.
I can force a laugh. 
I can dance and play the part,
if that’s what you ask.
Give you all I have. 

I can do it. 
I can do it.
I can do it.

But I’m only human,
and I bleed when I fall down. 
I’m only human
and I crash and I break down. 

Your words in my head, 
knives in my heart. 
You build me up
and then I fall apart. 
Cuz I’m only human. 

I can turn it on. 
Be your good machine.
I can hold the weight of worlds, 
if that’s what you need. 
Be your everything. 

I can do it. 
I can do it. 
I’ll get through it. 

But I’m only human, 
and I bleed when I fall down. 
I’m only human 
and I crash and I break down. 

Your words in my head, 
knives in my heart. 
You build me up
and then I fall apart. 
Cuz I’m only human. 

I’m only human. I’m only human. Just a little human. 

I can take so much. 
Til I’ve had enough. 

Cuz I’m only human, 
and I bleed when I fall down. 
I’m only human 
and I crash and I break down. 

Your words in my head, 
knives in my heart. 
You build me up
and then I fall apart. 
Cuz I’m only human.

Who do you say I AM?

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“Once when Jesus was praying in private and his disciples were with him, he asked them, “Who do the crowds say I am?”

“They replied, “Some say John the Baptist; others say Elijah; and still others, that one of the prophets of long ago has come back to life.”

“But what about you?” he asked. “Who do you say I am?”

“Peter answered, “God’s Messiah.”

Pause. What does that mean? Webster, whatcha got?

Image

I wonder if they all already believed that and were like, “Well, yeah, duh, Peter. Obviously. Maybe His question was rhetorical? He obviously just caught about a bazillion fish for you. Or were you asleep for that?” And then Jesus has to be all like, “Calm down boys, no competition needed here. You can repent to Me for that later. I’m still here to save you.”

I mean, it could have happened. They’re humans. And men. I’m half-kidding. We’ve all been at a football game before. Men are good competitors.

Anyway…moving on.

gardenThe other options are something likened to stopping breathing or realizing that this is potentially a mental health problem on a grand scale. They could have all been thinking, “You know, a year ago I was just chillin’ with my money and now I’m hanging out with these other 11 guys that I’m not sure have a clue, walking around with this guy who prays in gardens when he should be sleeping. This seems like a good time to jump ship.” Or, they were just like…”Eh, whatever, I was bored anyway, and this could be fun.”

That last one is probably unlikely, but still possible. Still humans.

The final option is that they could have gotten it. And knew that this was the real thing. This guy showed up. He didn’t come all fancy based on world’s standards (They probably thought he’d show up in a Fisker Karma or something.) but sure did have something special about him. Maybe that was the point.

Jesus goes on,

“[He] strictly warned them not to tell this to anyone. And he said, “The Son of Man must suffer many things and be rejected by the elders, the chief priests and the teachers of the law, and he must be killed and on the third day be raised to life.”

“Then he said to them all: “Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me will

save it. What good is it for someone to gain the whole world, and yet lose or forfeit their very self? Whoever is ashamed of me and my words, the Son of Man will be ashamed of them when he comes in his glory and in the glory of the Father and of the holy angels.”

Man. We just established that he’s the Messiah. And now he say to these guys, “Well, let’s go. Leave your whole life. You don’t need anything you’ve ever had before; just Me.”

sandals

Are you kidding me? I would have been like…”Um, my house, my donkey, my only book that I’ve got hidden in my backyard, my rice, my beans, my SANDALS! You’re just a guy – and we won’t get many showers travelling like you intend. Smelly and no iPhone. How can we make it?” (Who knows…Apple could have been there too.)

I think we all would have been. I also think it’s easy to think that these men were something special, that they saw something that made everything make sense in a way that it doesn’t now. I think we think it was easy for this men to do this.

But think about it. There’s no way in the world that they would have been able to just do this without a major struggle. It’s quite obvious that there were enough people around who didn’t think Jesus was the right One. And they thought that enough to murder Him.

Therefore, I think it’s safe to say that it wasn’t easier for them to believe than it is for us to.

But he was also talking about dying. And saving the world. And that catches my attention. And theirs.

It’s then also safe to say that it was right.

Think about your closest friends. Do you care what the world thinks about them? No, you don’t. You care about who they are. And you will follow them, be with them, and live life with them, because you know who they are.

The same applies to Jesus. We are just like Peter. Who do the athiests say Jesus is? The Mormons? The Muslims? Well, they say He’s something that He’s not.

But He says to you, “Child, who do you say I AM?”

Will you come?

…because love wins.

Jesus

Cited: Luke 9:18-27