It's hard to put my experiences with cancer into words with order and reason. Because cancer knows neither order nor reason. I had no idea what awaited me when I first heard the words "You have cancer." Actually, the words were more like "Well... we saw something on the x-ray that doesn't look good...but let's not jump to conclusions." What!! What do you mean "Don't jump to conclusions." You said the bad news first doc. And BOOM! You are in a whirlwind of emotions and a completely new, scary way of life- OH...MY....GOD- I have cancer.
When I say cancer is a whole new way of life, I am neither exaggerating nor embellishing. It is like having two full-time jobs. The first job during the day with appointments, radiation, and chemotherapy- and if you are lucky you will make to your second job later at home- that doesn't always happend. However, once you do make it to your second job at home, you are left to cope with your emotions. You think to yourself "What does this mean?", "What will I do with my life?" "How long are these treatments or how long do I have left to live?" It is sooo hard. But I made a decision for myself and said "This will not beat me." Well... it might beat me UP, but it won't break my spirit. Once I made that decision, I wanted to be positive, funny, and take this as the biggest pain in the ass learning experience of my life.
I was first diagnosed when I was just 14 years old. It is an aggresive childhood bone cancer called Ewing's Sarcoma. I know, who the hell ever heard of that? It was my freshman year of high school, as if I didn't have enough problems already. It was kind of brutal being not only a developping, hormonal teenager, but a bald, sick one at that. I missed a lot of school, but the staff seemed to be very accomadating. However, I had friends in my neighborhood where I lived that were not so understanding. A lot of them actually thought I was lying when I told them about my cancer. Ok... yeah I'm lying about some rare bone cancer called Ewing's sarcoma...I mean come on, who does that? Anyways, it's a heartbreaking experience discovering that you did not have the friends you thought, but a necessary one to be able to recognize it in the future, and have a better support team around you.
Now that I am 20, I can see that my "friends" had no idea how to cope. When you are young, you think you are invincible, so for them to except my situation is to except their own mortality. Although all those "friends" were 2-3yrs older than me at the time, my maturity was greater- even before cancer. I did NOT think I was invincible, ironic huh? Now a days, I'm really glad that experience with those people happend, because I really dodged a bullet- almost all of those "friends" got knocked-up or are on drugs. Whew! Thank God for cancer:)
I've had many experiences through cancer over the last 6 1/2yrs that have made me a better individual, and I'm able to understand people with all trageties better too. But believe me, there are times you think "Now what am I supposed to learn from this one!!?" Especially when you are like me with multiple re-occurances, and metastasis ,and have had multiple different protocols/treatment plans AND STILL have cancer. I've had somewhere between 8and 10 different tumors that have all been treated in some way. After the first time I got cancer, I was hopeful, even after the second relapse followed by a stem cell transplant- I was hopeful. It was only when I was almost 2yrs cancer free and in my second semester of college when it came back for the third time in my skull, did my hope waiver. That was the worst day EVER because not only do your chances of survival dwindle when it comes back after transplant, but so does your zest for life. I may never be able to finish college because of this cancer and make something out of myself- or at least that was my thought at the time. Your life can colapse in an instant, but it takes so much time to build it back up. By this point, I had built myself up multiple times already- could I really do this bullshit for a third time?
When most people get diagnosed with cancer they have choices; chemo and surgery or chemo and radiation. They get to pick between a port and a central line. Ok... so maybe all of those choices suck, but I have had everything on that list, including a stem cell transplant and trying out test studies. I have had three or four central lines and one port over the years( a port is under the skin access, while a central line hangs out of the body as access point for chemo) I've had three different reconstructive surgeries; two on my left humerus when the cancer first arrived -I say arrived like it popped in to say"hello" or something.... but the third was on my skull. Yes, my skull. It is considered brain surgery and they took out a huge chunck of the affected part of my skull. I know, I almost crapped my pants when I found out I had to do this. But don't worry they replaced it (part of my skull) with cement- bone cement that is. How comforting... And of course, I've had more chemo and radiation than the entire oncology wing of Children's and Froedert Hospital put together. Ok... maybe thats a little exaggeration, but it is what I feel like. It got to the point that I was jealous of OTHER cancer patients who didn't have to do everthing I did or had shorter treatments, but most of all I was jealous of survivors. Let's just say that when you are jealous of other cancer patients, its time to re-evalute yourself. In all seriousness, of course I love to hear survivor stories and am ecstatic for them because I know how I would feel if I could be cancer free. It would be indescribable...
Even through all of this stuff, it is completely necessary to laugh and be light-hearted with your everyday experiences- even cancer. Quite frankly, I feel like I could be a poster child for cancer. Meaning I could pretty much answer most questions about it, wheather emotional, scientific, philosophical, whatever makes your boat float. Not that I'm perfect or even close to it, but I have learned a lot over the years and finally want to share and connect with people about it. It is amazing how much helping and learning about others can teach yourself a thing or two. I say that because I would not be where and who I am today if I hadn't listened to the people around me- older people, younger people, and kinds of people. Because although, cancer has taught me priceless things about life itself, there are still "normal" people experiences that I could learn from, and that wiser people can help me with. I try to be a well-rounded person who's every waking minute doesn't concern cancer. No, it is not easy, but I still try to have love, and relationships, travel, and educate myself somehow.
Ah... the area of love and relationships is a great yet pretty twisted area in general, but especially when you have cancer. "Oh.. I'm a Leo that loves long walks on the beach...and...OH by the way, I have a life threatning illness that consumes my everyday life. Wanna get some dinner?" It's not exactly the greatest pick up line. This definitely complicates things, but let me tell you from experience, it's not impossible. It's more like you have a built in "weeder outer"- meaning it weeds out the bad guys pretty quick(or girls). Someone who loves you is not going to care if your bald with a central line sticking out of your chest- even during intimacy- they are just happy to be there:) And it's ok to give yourself time to find YOURSELF beautiful first- that is what is most important. It took me some time to get used to being bald, but I knew it was temporary. As treatmeant went on with radiation to my head- unfortunately I found out I was permanantly going to be bald where I was radiated- which was a HUGE area of scalp. That, I admitt was a much harder pill to swallow. But I found myself a very sexy wig- that did not look like a wig- because that was my biggest fear, was getting a fake looking wig that when people saw you they go " well thats definitely a wig!". It did wonders for my confidence- the wig that is- especially when random people commented on how beautiful I looked and had no idea it was a wig. The bottom line is, if you believe you are beautiful, that will exude and show to others. Whatever the insecurity, it does not matter, you ARE beautiful. And its ok if you need a reminder every now and again.
I've gone through many different stages and phases with cancer, and with life itself. It took me a while to learn that even the bad phases like anger and grief are ok and oh so normal. You can be a happy positive person, but not every waking moment of everyday. You can only except some of the bad a little at a time and cherish and move forward with the good.
Some of the ways I keep persevering has a lot to do with a great support system. My mom, for instance is always there for me, and slept every night in the hospital that i did. Which is a lot of nights... She always tells me to find a little happiness in everyday, to hold us over until we get to those really big happy moments. It's essential to just simply find peace in everyday life. And those reminders help me emmensly, especially when I just got my 4th "Its your last day of Radiation Congradulations Certificate." Really? A radiation tech told me I could make a wallpaper out of all my certificates. Anyways, it's times like that, that you need to laugh it off, and sometimes just having my mom remind me to do just that, can be very inspiring.
Regardless of where your inspiration and strength comes from, take the resources you can. A good friend once told me that it is ok to break down because the people who love you will be there to catch you. Now don't get me wrong, there are people who just say that they want to help you and to give them a call whenever you need, but really they're just saying it to make their own conscious feel better. When it comes to those people who do not follow through just "pick it and flick it!" And when I say "pick it and filck it" I mean like a booger- they don't deserve much more attention than that. But for the people who ARE there for you- cherish them always- they can be pretty few and far between.
Being 20 yrs ,and having as much tragety and racing to grow up as I've had, you learn that friends are where you find them. I have friends that are my age, and friends in their 50s. Sometimes I find I have much more in common with seniors on medicare and SSI than struggling 20 year old college students. And thats ok. In fact, honestly I feel more comfortable surrounding myself with a group of older more knowledgeble people than a typical group of people my age. Which is probably why I only have one friend my age and in college. She is my best friend and has been there for me from the beginning. This is probably one of the reasons we relate so well. Mina has seen me go through it all. She is the one friend who I can go to and say "Can we go now, I have to take my meds by 9:00pm" Most 20 year olds can not comprehend that statement. So take it from me, have fun when you can with whoever you can, no matter age, gender,or nationality. You may find that those who look very different from you on the outside are really quite the same on the inside.
Cancer is a funny thing, it can be the worst thing that ever happens to you, but also one of the most awakening things. It has completely helped to shape and mold who I am today. I see how beautiful and fragile life is ,and try to soak in every moment I can. Alright, maybe not the puking , bone throbbing, back breaking moments. And definitely not the moment where the nurse first comes in the room with a complete biohazard suit on and you realize its to administer the chemo into one of the arteries that goes straight to your heart! Seriously, can they make you feel anymore horrible about putting biohazard waste into your body! But other than that, drink up those happy moments where you laugh at a joke, or cuddle with your kitty or doggy. Enjoy a fresh beer at the end of your day with your family. When I say a fresh beer, I really mean a six pack of course. I look forward to writting a lot more about my experiences with cancer- for this first blog barely hits the tip of the ice burg..
