Almost let the …

Almost let the magic of Christmas pass me by, before it was too late. But just in the nick of time, before the last minutes had passed, I managed to find it. Rather, it found me. 

Earlier today, I couldn’t find the book I wanted to read, so I wandered into my mother’s room, and she handed me a book from her bedside table to read instead-until we found the other one, she said. Women Food and God by Geneen Roth didn’t immediately appeal to me, but it was exactly what I needed. I think I believe that things often happen for a reason–little things I mean, simple things that catch us off guard. God gives us the things that we need by allowing us to stumble into them or by letting them fall into our laps. What often seems just by chance or completely sloppy may be, somehow, strategic.

For example, I’ve been struggling a little the later half of this semester. I was homesick and a little depressed. I felt, for lack of a better word, empty. Before I left school to come home, I was on facebook and started a conversation with my St. Jude chaplain. I saw that she was online and thought to myself,  ”I miss her. I think I’ll say hello.” The conversation led to plans, and the plans led to dinner with Lisa before I came home. Over dinner, I ended up talking to Lisa about everything I’d been feeling–emotional and spiritual. As she gave me the medicine I needed, the spiritual food I’d been hungering for, she said that she knew the minute I contacted her that I needed something. It seemed strange to me at first that she thought that, but after I thought about it some more it began to make sense. Call it my subconscious, call it the Universe, or call it God: something caused me to reach out to Lisa when I needed her most. 

Now jump with me back to today. I’m looking for a certain book, and when I can’t find it, my mom hands me this one. And she has no idea what’s been going through my mind or that I need the words in this book so badly. But I did, and I do, and the book turns out to be an answered prayer (literally).

Simplicity. That’s the key to life, or at least to really living it.

“And suddenly you caught a glimpse of beauty and it’s as if someone opened the cage door and let you out of the iron vise of your mind. And not one thing has changed from the moment before but everything look and feels and is completely different.” –Geneen Roth, Women Food and God

So there it is. And, as much of a play on words as it is, it’s that simple…yet so difficult to grasp.

Close your eyes, and remember how it felt to be a child, how it felt to be trusting and peaceful and so sure that each moment was about to be the moment you’d been waiting for. Remember how it felt not to look at a clock constantly or in a mirror twelve times a day or at your cell phone every five minutes. Remember how it felt to breathe deeply and talk slowly and notice everything. Remember how it felt to live in the moment.

Somehow, the simplest of concepts, simplicity itself, is the most complicated. Somehow, our lives are all about complexity. But are we created to be so complex? Think about what we require to survive- food, air, water, and love. Is that all? How could it be that the list is so short?

If you truly live in the moment in every sense of the word, if you become yourself, not bound to your memories or consumed with imagining later moments and later days and a later future, then food becomes simply what air is to you, simply what sleep is to you—something that is required for survival, but something that seems silly to hoard or want more of than you need. When things don’t seem magical anymore, remember the power of music, the beauty of hearing a pretty voice combined with the twinkle of piano keys. Remember the way it feels to write, to type, to scrawl words in cursive with a particularly inky pin on a piece of paper.

When I had cancer, when I had chemo, food lost its hold on me because it made me nauseous. And it was then that I was able to find the beauty in simplicity. It was then that I was able to forget the complexity of a world that is concerned with dieting and superficiality. It was then that I was able to enjoy bathing my body, the feeling of soapy skin and hot water and lotion. When I had cancer, I had ample time, and so I was forced to notice what was around me, to see the sunlight as it flickered through the window and find the beauty in my little sister’s laugh.

And the noticing, the simplicity, the acceptance of beauty even though everything is as broken as can be—that’s where God is. 

 The past few months, I’ve somehow lost sight of simplicity, and because of that, I’ve lost sight of God. I’ve lost the ability to feel and work through my emotions without tying them to my eating patterns or stress or blaming them on too much schoolwork or being homesick. To put things simply, I’ve lost the ability to live in the moment. It’s been all about the rush, the planning, the tomorrow, the future. 

But what about today? What about right now? What about this very breath? Isn’t that important, too? Doesn’t it deserve our attention? Isn’t it… everything?

I’ve felt a lot of guilt lately about not being completely happy or content with my life. After all, I have so much to be thankful for. I have my health back–my life back. But truth be told, I still have some things to work through, some feelings from last year that still need to be felt. And while that may not make sense to you, and while it may make me feel guilty, it simply is the way it is. And the only way I can work through everything, the only way I can keep living–and not just living, but thriving–is to live in the moment, this moment, every moment.

That’s what I’ve been missing lately. And just as God sent his Son to us in the most humble and unlikely of places, today He sent me the answer to my problems in the most unlikely of places–the book that I didn’t even want to read.

Merry Christmas

 

the moments that keep me moving forward

Day 2 of my vow to keep writing, to keep being open with myself, to keep thinking, and already something wonderful has happened. What seemed like just a normal few hours at St. Jude in the waiting room for routine bloodwork turned into something magical. I brought my friend Lauren with me. She had never been in St. Jude before, never seen the inside of its walls, the smiling happy place that it truly is. And as we sat on a couch in the lobby studying for our final exams, a tiny little girl with no hair, wearing a mask and a giant pink bow on her bald head walked by and sat on the couch beside us. She was a five-year-old version of me last year, with big blue eyes that smiled from behind her mask. “I like your pretty headband,” I said, strangely eager to connect with her, eager to be a part of her journey, somehow. She stared at me, pensive. She waited another beat. “Thanks,” she said, inching towards me. I went back to studying elimination reactions, not noticing as she made her way over to our couch. And then I felt her beside me, snuggled up against me, as close as two people could possibly be. “Will you read me this story?” she asked. She was holding out a book, a cheap, plastic-y paperback that was probably being passed out somewhere for free in the hospital. I smiled, grateful that be something to her, anything to her. And then I read her a story about a princess, pausing to see her react with joy, at the simplest, silliest things in a very badly written book. When my name was called out on the intercom, the moment was broken. I said goodbye and patted her on the back, and Lauren and I went to my appointment. And just like that, our time together was over. Maybe she’ll survive cancer, and maybe she won’t. But for reasons that are inexplicable, her allowing me to be a part of her momentary happiness gave me enough joy to savor for the rest of the day.

Learning to begin again

It’s hard to begin. It’s been way too long since I’ve written on a blog, written for the world to see. It’s been way too long since I’ve exposed myself and let my guard down like this. When I finished treatment, I felt like there was no longer any reason to write. I felt like no one would be interested in reading my words; I felt like maybe I was done being everyone’s “hero.” What I am about to attempt to put down in words probably won’t make sense to you, and I don’t expect it to. I don’t expect you to understand or sympathize. To be honest, I’m not sure why I’m making it available to the public. My purpose in writing this down is for myself, for my own understanding of what I’ve been feeling. Yet, it seems, without a reader in mind, my words don’t flow as well or as often. I am renewing my commitment to blogging because of this. Without writing, I feel suppressed, twisted up in knots, incomplete. Without writing, I feel as if I don’t fully exist.

Let me start from where I last left off. Coming to school again was wonderful, exciting, and enchanting. Everything was new again, and I dove into the year full speed ahead, never pausing to look back. It’s probably accurate to say I lived in a little bit of denial, separate from the world of being sick and having cancer, caught up in the normal college life. And while it was enjoyable and I was happy, I’m not sure I was being completely honest with myself anymore. Things changed in October. I had my 6 month post-treatment scans, and things were going well until I got a phone call from my nurse. She wanted me to leave the waiting room where we were waiting to be called in for my PET scan and come immediately to the clinic. Dr. Pappo wanted to see me, she said. At first I was ecstatic, happy to be given so much attention from my doctor whom I love. And then I walked into his office and saw his face. He was terrified, so I knew that things were about to get really difficult. My blood work didn’t look normal, he explained. My platelets were abnormally low, and he wanted to do a bone marrow biopsy. I knew what this meant-one of the downfalls of loving science and cancer research and medical facts. There was a chance I had secondary leukemia, induced by the chemotherapy that had saved my life months before. I’ll make this part of the story brief. For two days, my mother and I existed in a state of limbo, caught between two worlds-the normal, happy world, and the world of cancer, the world we’d just escaped.

It turned out ok. My bone marrow showed no traces of cancer, just suppression from the long term antibiotics I’ve been taking. Two weeks later, my platelets showed improvement. It was all a false alarm, thank God. But instead of jumping right back into a state of supreme happiness and normalcy, I fell farther away. Instead of feeling relieved, I felt confused. Instead of feeling blessed, I felt abandoned. Where did that leave me?

So for the last month and a half, I’ve been in this state, a little bit lost and confused, a little bit angry, a little bit hurt. I’m not sure what you expect me to feel, what I’m supposed to feel, where I’m supposed to go from here. I just know that something seems off, and it all started when my life was momentarily turned upside down by the big bad Cancer once again. In some ways, it would be easier if I was fighting the disease. I’d have a set plan and an agenda and I’d know exactly what I was supposed to do. I’m not saying I wish this was the case. But now I’m left with uncertainty, ambiguity, and guilt. I feel so guilty for not being completely happy with the life I have now but so confused about what I’m supposed to do with it and how I’m supposed to find my happiness again.

With my last final exam of the semester tomorrow, I’ll be heading home to spend a month with my family for Christmas. It couldn’t have come at a better time. But besides enjoying the Christmas lights and the family bonding and the delicious holiday food that I will have an appetite for this year, I have other plans for Christmas. I plan on rediscovering myself-my likes and dislikes, my passions and dreams, my sense of humor and my imagination. I plan on rediscovering my spirituality- on having open dialogue with the God that is everything. And I have hope that, slowly but surely, I will come out on top of things. Slowly but surely, I will discover a Maggie who isn’t just a cancer patient or even a former cancer patient. Because even though that part of me will always be there, there is so much more to me than just cancer. So much that is waiting to be appreciated and embraced.

Comfort

There are moments, like this one, that feel like just too much. Another dear friend from St. Jude, a fellow patient named Carissa, passed away today. Feeling this way, feeling so tied to death through love, takes me right back to losing Odie just a few months ago, and all I can do is wonder, “why?” Why this girl? Why that little boy? Why did they get the types of pediatric cancer that don’t respond as well to chemo? And then, the biggest question of all: Why am I alive when they aren’t? Carissa was a St. Jude patient for nearly 3 years. Can you imagine going through cancer treatment for 3 years? I can’t even imagine going through it for one year, and I’ve done that. But every time we saw Carissa, she was smiling. She never complained. She never pouted. She never took her anger out on other people. She just lived each day, never failing to offer me comfort when I got another leg infection, when she was the one who needed comfort.

I leave for college again in the morning, and I am full up of emotions. I feel like I may overflow any second. I’m so happy to be getting another chance at life, to be going back to a school I love with all of my friends. I’ll even get to start my research at St. Jude (finally). But I feel so torn. Being at school means being back in the real world as an adult, on my own, away from my family. It didn’t feel like such a big deal the first time I went to college, but it’s amazing how much bonding you do when you go through cancer together. Now, I feel like much of who I am lies in them. I feel like being apart from them will be physically painful. I just can’t fathom it. I worry that people will be different at college now, that I’ve changed and they’ve changed. And I know that’s only natural, but I feel like I need something to cling to, something constant and unchanging.

2 Corinthians 4:17-18 says “So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” I like this passage because I think it applies to everyone–no matter what their religion is. The only thing I have to cling to is something I can’t see or touch or hold in my hands. The only thing that will be constant in my life from here on out–and even after that–is something that words can’t describe or name. It is God.

No matter how much thinking or studying I do, there will always be things about God that I am unsure of. But what I am sure of is this: God is real and eternal and invisible and inside of other people. God is what keeps me connected to Odie and Carissa and baby Kya. God is the glue that ties all of my life together. And if I only look for him around me–in nature, in animals, and in people–he will show up, even when I least expect it.

http://www.addthis.com/bookmark.php?v=250&pub=chendwww

http://www.addthis.com/bookmark.php?v=250&pub=chendwww.

 

 

 

 

 

 

 

 

 

Moving On

I spent most of today packing up things from my room into cardboard boxes and sorting through old things that were stacked up in my shelves. Moving out of or on from a house, I realize, requires one to move on in other ways as well. As I sorted through my childhood sticker collection (I once had a strange obsession with stickers), first scrapbooks, old photo albums, and countless pictures in and out of frames, I found myself holding back tears. And I found myself realizing that, as much as I may want to sit in a pile of pictures and reminisce about childhood friends, governor’s school, my first kiss, Pageland, and my time at St. Jude, sadness shouldn’t be the only emotion I feel when doing it. My trashcan is now full of old notes passed to me in high school, high school essays and tests, used college notebooks (I saved the chemistry ones, mind you), and stuffed animals and t shirts that didn’t have enough emotional significance to stick around. Even though I may be parting with a lot of junk, the memories will stick around on their own. And when my memory fails me, when that page teacher’s voice is harder to hear in my mind and Odie’s face is harder to see, I’ll still have something left of them. I’ll still have who they have helped me to become.

I wish I could bring to life every picture, every memory, and live them again. I wish I could be a child again, playing imaginary games with my sisters. I wish I could be in my first play again. I wish I could fall in love with chemistry all over again and re-win some speech and debate competitions. I wish I could re-live Pageland and every page reunion I’ve attended, exist in a room with 62 other pages that are now scattered around the world on different paths. I wish I could be “Sydney Melana Michaels” in mock trial again and relive the bonding time Katherine and I got to do on mock trial trips. I wish I could relive the moments Sheerin and I spent taking pictures and videos of ourselves in class freshman year and the formal we got ourselves invited to that winter. I wish I could feed the squirrels with Macie, Arden, Katherine, and Sheerin again outside of Target house. I wish I could be in Rhode Island with Allie and Becky again and pick Macie as my Chi O big sister all over again. I wish I could go on the Tri-Delt trip with Beth again. I wish I could re-live  and re-live and re-live every moment I ever spent with Odie, rehear him tell me that he loved me and that he would miss me, rehear him give me the courage to fight anything.

But re-living just doesn’t happen, at least not the way we wish it would. If only life were that simple. Instead, we move on and change and forget, bit by bit. We become different people. We move cities and states and sometimes countries. Some of us move into different worlds, different states of being. And just when someone or something seems impossibly far away, I realize that it is, in some ways, closer than ever before. As cliche as it sounds, I realize that it is a part of me. Whether we ask for it or not, whether we give it permission or forbid it, whether we expect it or not, our life changes us. Each person, each moment, each experience leaves us as something different than it found us. Whether it’s something as beautiful as friendship or something as terrible as cancer, it imprints itself on us for eternity, and we emerge a little older, a little wiser, a little more complex than before.

“Move on,” the past urges us, because there is no way we will forget it. It is inside of us, behind us, around us. It is us. And when we remember what once was, I think it is better to smile because of what it made us then cry that it is gone. I may not be a child anymore, or a page, or a cancer patient. I may not have Amber in the same state, Sheerin in the same country, or Odie in the same world, but because of them, I am a lot more secure in who I am, a lot less afraid to believe what I think I do, and a lot readier to take on the world. Because of them, I am me.

Odie

 

It’s one of the only times in my life I’ve ever felt at a loss for words. Because the person I love more than anything is in heaven. And I assume that heaven is a wonderful place, suitable for someone as beautiful and wonderful as Odie. But heaven isn’t close to me. It isn’t close to here. It isn’t close to now.

I’ve written before about how I’ve had to say a lot of goodbyes in my lifetime, that I always remember that people are put in our lives and change us forever, that when they leave, they leave a piece of them with us. I’ve never hoped so much that this is true. But then again, I’ve never lost someone so close to me.

It’s hard to explain what it was like meeting Odie for the first time, that fateful day in the Triage waiting room at St. Jude. I was having one of those days that felt like it was from hell. I was nauseous, my leg was killing me, and worst of all, I was terrified. Cancer was like that. And a few feet from me was this adorable little boy wearing a hat and sitting in a wheelchair, completely absorbed in his iPad. I found myself in conversation with his mother, the pretty woman sitting next to him. She looked even more afraid than I did. When she told us about her son’s prognosis, about his cancer, about his chances, I looked into his eyes expecting to see the most fear I’d ever seen before. But that’s not what I saw. Because Odie wasn’t afraid. As the months went by and our friendship deepened, I continued to respond to my treatment. My cancer shrunk away as Odie’s cancer, for whatever reason, did the opposite. And as the months went by and our friendship deepened, I kept expecting some sign of fear to pop up in this little boy’s beautiful blue eyes. But Odie wasn’t afraid, even then.

Odie had within his thirteen-year-old freckled body the greatest courage that I’ve ever encountered. I was older than him in years, but he was older than me in every other way. He was wiser. He was braver. He was stronger. If there’s one thing I want the world to know, it’s how much I love Odie and how much he taught me. There were many times during the past year when I wanted to give up because of the pain and the vomiting and the lack of my old normalcy, but each time I could close my eyes and remember him. I would remember how he looked sitting up in his hospital bed eating a giant bag of potato chips and smiling, despite the pain he was in. I would remember the time he told me that he was going to be a marine one day. I would remember how I felt when I found out his treatment wasn’t working. And  that was more than enough for me. Because I decided that I wasn’t ever going to back off when it came to cancer. Because cancer took my Odie from me. Because cancer takes so many lives every day, even young ones. Because cancer deserves the hell it gives to so many beautiful people.

A very close friend of mine lost a good friend to cancer years ago as well. He was very young, too young, and his death devastated a large number of people. I asked my friend what to do in my time of grief. I asked her what would make it better. And she told me to channel my emotions into a good cause. It’s not hard to figure out what she meant; she’s a St. Jude doctor now. I know that her friend’s battle with cancer inspired her to become an oncologist. And I know that she’s the best there is. I just hope that one day I can be half the doctor she is so that I can touch lives like Odie’s.

The visitation, funeral, and burial this weekend were difficult, but they were beautiful.  This song is a song that was played at the funeral, a song that Odie’s mom and sisters sang to him. http://www.youtube.com/watch?v=VqaBof47pmY

Not only is Odie an honorary marine, he is also a junior special agent in the United States FBI. Odie touched lives near and far away. His spirit was one that reached out to everyone he encountered. It was so good to meet so many of Odie’s family members. Now I can see where Odie got his qualities. In an attempt to say goodbye to Odie (for now at least), I wrote him a letter. At the visitation service, his sweet aunt put the letter in Odie’s hands. It was still there today when they buried him. I wish I could have given Odie something more than a letter, something to show him my love, but that’s the thing about love; it’s not concrete. My biggest hope is that, in my time together, I showed Odie my love. Because, without a doubt, he showed me his.

 

 

 

 

 

Fear

After a long and eventful day, I retreat to the bathtub for one of my most treasured activities. I take a hot bath. I soak my entire body, including my leg, which has finally healed enough for me to emerge it under water. It always feels good at the end of the day, sitting and breathing and letting my mind escape time and all the thoughts that come with it. For moments at a time, I start to forget that awful disease called cancer and what it put me through. I start to forget the insensitive comments people made about me limping after I worked so hard to walk this well. For moments at a time, I can block out the bad enough to be thankful for all the good. My life, the friendships I made this past year, the friendships I made before this year, my family, my dogs, my love for writing, my passion for chemistry, and, yes, even the warm water that surrounds me. It’s all enough. Why can’t we be free of the bad thoughts, the anxiety, and the awful memories at all times? Why do we only get glimpses of what it is to really live?

When I get out of the tub, I notice how tired my body feels, how exhausted I am, and it makes me want to take my temperature. I check the thermometer. It’s 100.5, one tenth of a degree above what St. Jude declares as fever. Panic fills me up because fever could mean that my leg infection is escalating, that I’ll have to get another surgery and get a concrete antibiotic spacer but in my leg in place of my prosthesis. It could also mean something worse is growing in my leg: the cancer. These are my worst fears, these selfish worries about my well being. That feeling of calm I had moments earlier is completely gone. I am so afraid that I end up calling a doctor, only to be told that I should wait and cool off before I take my temperature. Duh. My mother comforts me and tucks me in, and I realize how much I am still a child.

Why is there so much fear inside of me? Will it be like this for a long time? I suppose everyone who goes through trauma has fear afterwards. Don’t get me wrong; I’m so thankful and happy most of the time. I know that my life is a gift. But I don’t want to risk losing it again. I close my eyes and imagine myself  rushing to the emergency room and finding cancer again. I picture the long year that follows, the chemo and the anguish. The pain. And I realize that if I was in that situation again, I would think back to the days and hours that led up to the life changing discovery. I would think back to my life before my relapse. And I would want it to be a happy one, free of fear. Because fear doesn’t change anything when it comes to cancer.

So as I continue to get stronger and walk further, I will aim for less fear, and more of the calm, peace, and happiness. More of the life.

Finding Things to Treasure

I’m back from Anne Houston’s college graduation, and for the first time in a couple weeks, I have ample time to think. If you know me well, then you may already know that ample time to think is not always a good thing for me. Lately, it usually isn’t. Don’t get me wrong; I’m thrilled to be home. I’m settling into a new type of routine, eating more every day, and building up the muscles in my leg. I can walk twice as far before getting tired this week than last week. I haven’t thrown up in a week and a half. I haven’t taken pain medicine in at least a week. But when the time comes for me to be still and quiet and introspective, when I close my eyes at the end of the day, I have a mixture of emotions. That question that I’ve tried to put out like a fire, the one that I know has no answer, keeps reappearing in my head. “Why me?” And then I see the past year in a series of images, a string of memories untouched by time and in sharper focus than ever before. There’s that day, in Hattiesburg, when I picked up my MRI results. There’s my first chemo treatment and the fear that came with it. There’s the day my hair started coming out in the shower. And then a long line of chemo treatments that blur together. Never-ending vomit and pain, the smell of the hospital rooms and the hospital soap. I try to shake these things out of my mind, but they keep coming back, and deep down I know it’s because they are a part of me now. I can’t just extinguish what happened.

The memories recede and more questions present themselves. After being a cancer patient for a year, I can’t help but wonder: “What do I love to do-for me? Who am I? What is my life about? Who is Maggie, aside from a cancer survivor?” I know I am a student. I love to learn, now more than ever. I crave school every day. I love my books, but nothing compares to being in a classroom or a lab, surrounded by people who love knowledge as much as I do. I can’t be a student yet, though. I have a couple months to spend before I go back to school. I have a summer opening itself up to me, waiting for me to soak it in and fill it with fun and joy and pleasure. But how do I remember what gives me pleasure? What gave me pleasure before I was sick?

My mission this summer, aside from physical healing, is to find myself again, a self I once claimed to know so well. And while this task may seem intimidating at times, it is also somehow a gift. I have no idea where I will find myself moments and days from now. It may be in the flowers, among the kitchen spices, or with a guitar or piano. It may be in an office, with children, at a swimming pool, or on vacation. And it may be right here, at my keyboard. Wherever it may be, having the freedom and the time and the life to do find out should be treasured.