First Round!

February 7, 2010

So, I’ve been out of the hospital since Tuesday now and I’m not going to lie, I still feel pretty crappy. I tried to prepare myself as much as possible for my treatment but, I still think I wasn’t quite expecting to get hit this hard. I like to consider myself a pretty active person but honestly, I’ve had an extremely difficult time getting out of bed since I got out. I ventured to the grocery store today and felt myself winded after 5 minutes. Brandon and Derek had to go get a wheelchair for me, I just couldn’t walk. My mom jokes that she knows it’s bad when I don’t even care about my make-up or hair when leaving the house, which I don’t. It just takes way too much effort now that I’m so tired…which says a lot for me. Anyone who knows me knows that I rarely go out without trying to look decent!

As for the chemo itself, I don’t remember much. I was sleeping throughout most of it due to my nausea medicine, which was great because the less crappy I remember feeling the better! I vaguely remember some TV shows on the History Channel but that’s really about it.

My hair is starting to fall out, as well as my eye-lashes. I have a feeling my leg hair will be the last to go…drats! I have my wigs to cover my head, as well as my hats and scarves, if I’m not too lazy to do that too, haha. People may see a scary, bald Jamie!

Other than that I’m okay. Just trying to adjust to feeling tired and sick a lot. They said I should start feeling better sometime this next week, so here’s to hoping!

Hurry Up and Wait!

January 30, 2010

After a week of skirted anxiety I was supposed to begin my chemo on Thursday. Well, on Wednesday I received a call that all of the beds were full and they would call me when one became available. Now my biggest frustration is wondering whether or not to defrost meat for dinner, will it end up going to waste if I get the call?

I had my port inserted on Wednesday. I wasn’t nervous at all actually, over the past year I’ve gotten used to biopsies, surgeries, and the sort. I found it odd that I was allowed to keep on my jeans but wear a gown over them. I thought in the bathroom about how ridiculous I would look if something happened and I had to leave the hospital wearing jeans and a hospital gown. Would people think it was how I stylishly dressed? If it was just a hospital gown it’d be obvious but paired with my holy jeans? Seriously though, I’ve never ever been allowed to keep on my own clothes, something about the room being sterile…perhaps that didn’t matter?

I’m guessing it was because the surgical techs wanted me to join in on their dance party they had going on when I was wheeled into the room. It was a blinding white room with “Castles in the Sky” blaring. I lifted my head to a guy who looked about 25 who looked as if he was trying to use some sort of tool as a glow-stick and simply said “Oh God, I hope you’re not the doctor.”

The rest of the procedure went fine, I was under conscious sedation and vaguely remember babbling on and on about Disney. I recall saying something about hating height sticks, I’m sure the doctor was wondering exactly what I was talking about. I hope it came out clear and he doesn’t think he was saving some sort of perv.

After that, I was sore but fine. My mom and I stopped at Wendy’s and then I went home and passed out. So now, it’s a waiting game. The thing that ticks me off is I know the day I take out meat for dinner will be the day I’m called…

“Laugh as much as you breath and love as long as you live.” – Unknown

Vain?

January 6, 2010

First things first, my PET/CT scan came back clear. As of right now, my cancer has not spread out of my leg. So, that is wonderful news!

I saw my medical oncologist yesterday and really like him. He has dealt with sarcomas for years and is very well versed in treatment options. He is actually pushing for me to avoid amputation if possible. He’s the first doctor to tell me I have other options, which is of course, amazing. I’ve decided to go with his treatment plan. It consist of 4-6 doses of chemo, each lasting 3 days every 3-4 weeks. I’ll be having my chemo done at St. Joseph’s in Tampa, probably just staying there for the 3 days every month (if insurance will cover it) because it’s a hassle to drive out over an hour, stay there for 6 hours, then drive home for over an hour for 3 days straight. I’ll likely be starting the chemo the week of the 18th. This gives me time to go on my Disneyland trip and get some things prepared at home.

That’s all I know for now. I’ve already ordered some pretty snazzy head scarves and hats. I’m going to look at wigs next week after I get back from California. It may sound vain but, I’m really not looking forward to losing my hair. I love my hair and I think that part is going to be very difficult for me to deal with. Hair is considered to be part of a woman’s beauty. My hair is very long and it is the one thing I receive many compliments about. I never thought I was a person to care too much about looks but the idea of losing my hair makes me very uncomfortable and self-conscious. I’ll get used to it though and perhaps my hair will come back even better than before.

I’d still rather be bald and alive with my daughter. At least I’ll have a chance to try out new hairstyles!

I recently came across this blog again and looked back on my January post “Cancer lurking in the shadows”, what an appropriate title and what irony. I’ve had cancer all along.

For those of you just tuning in that haven’t found out from another source I was diagnosed with a rare form of bone cancer, called telangiectatic osteosarcoma, on December 16th. It’s very likely that I’ve been misdiagnosed since January. The pathologist misinterpreted the results from my January surgery to remove the bone tumor and from the August surgery. On my latest surgery on December 2nd, they had no idea what it was, so they sent it away to Mayo Clinic and wallla! a diagnosis of telangiectatic osteosarcoma. I’ve had a PET/CT scan and a CT of my lungs done but won’t know the results until Monday. Anticipation, anticipation. Well, a more accurate reading of my feelings would be fear and hope with anticipation that everything came out clear.

I’ve been doing so much research on this disease it feels like my head is spinning. I’ve found sarcoma support groups but have been unable to find another individual who has suffered from telangiectatic osteosarcoma. Even my doctors are unaware of anyone. I’ve always been rather unique and enjoyed it but, I think this time I’d prefer to be mainstream. If you have to have cancer you certainly don’t want a rare one and on top of that a rare one that hardly anyone has ever had. It’s a bit discouraging and I feel rather alone.

I find it odd that people don’t start rushing to get things done until they find out they may die. We’re dying everyday yet we put off things and wait until we’re more prepared and better equipped to do them. Well, this news has really put things into perspective for me. I may only be 23 but, my life is now and well, you never know.

My family and friends say I am handling this brilliantly. The truth is, I don’t know how to handle it. I’ve always been one to make jokes, poke fun, and try to be cheery…which is how I’m attempting to handle this. Displaying emotions other than happiness or displeasure has never been a strong suit of mine. I prefer to keep the emotions that make you the most vulnerable, sadness, fear, heated anger all under control and well disguised. Usually, this isn’t a problem. Now, I’m not sure of who I am anymore. I’ve found myself crying at night, hiding in the bathroom or silently sobbing into my pillow. I smile and joke around my friends and family, because they’re there for me and make me remember that I’m still me, they remind me that I’m still funny, witty, loving, stubborn, sarcastic Jamie. But, when I’m alone, I find myself lost and fearful. It’s funny how one word can make you so frightened and unsure of yourself yet, so hopeful at the same time.

I’ve neglected this journal but, I’m going to keep it updated throughout my journey from now on.

Happy New Year to everyone.

Ungrateful magic pill

December 11, 2009

There are times when I feel very ungrateful. I am blessed, I suppose, even though I am not religious, to have a good life. I have a wonderful family, I do not go hungry, I have a roof over my head, and honestly, possess the majority of my material needs and desires. Is it wrong that I somehow still feel unfulfilled? I think so and it leads me to feel angry with myself while still yearning for more.

I do not live the life I envisioned myself living. I had a child too young, two months shy of my 21st birthday.  I feel grounded to the life I lead now in order to provide a stable life for my beautiful, wonderful daughter. I would never ever change the fact that I had her, because she is my joy but I often find myself pondering over what could have been. I wanted a life of adventure, of journeying off to distant, foreign lands. I now find myself confined to a life of suburbia. I know many people have taken their children on their life’s journeys but I am fearful of sacrificing a normal childhood for my daughter in place of an adventurous adulthood for myself. I’m torn between what I think is right, I don’t even know if I think anything is the right way.

Would she be angry if we picked up and moved with little notice? Would she regret constantly being in one school system in order to cure my wanderlust? Would she be content to take part in her mother’s most desired fantasies?

I wish there was a magic pill to cure wanderlust and to be happy with what you have. I am thankful but I’m still hoping there is more out there for me.  Perhaps she’ll seek the same things I do and wish to experience the same things when she is a young woman, then I’ll have two partners in crime (simply because her father would be dragged along, he may not wish to go, but he wishes to be with us wherever) to reach my dreams.

Untitled Short Story

June 22, 2009

So, I’ve started to write a story for a film to be based off of.  I tried writing it as a screen play first but figured out it would be easier for me in the long run to set it up as a short first. I don’t have much done, but here’s the first two “chapters” or little sections. I haven’t gone through and edited it yet, so there are probably many errors. 🙂

Chapter 1- Andrew

Faint yellowed rays of sunlight peeped through the cloudy skies as I made my way toward the diner. I was already 10 minutes late. I stuffed my hands into my pockets as the wind picked up speed, sending crumbled remnants of leaves flying into my face. As I reached the diner an older man, with leathery skin and gray wisps of hair peeking out from beneath a suede psuedo cowboy hat held the door open for me, clanging an annoying cow-bell chime. I glanced around the diner, searching for Meg. A pale arm rose up, waving at me from the back corner. I strided over, smiling at Meg and noticing the change of her curls from golden blonde to  chocolate brown.

“You changed your hair? It looks nice.”

“Thanks”, she smiled, gently reaching up and twirling a curl around her fingers, “you think mom will like it?”

“Well, you know how crazy mom is about chemicals and altering what god gave you”, I stated rolling my eyes.

“Oh well. I thought it made me look sultry” she laughed.

“Just great, my little sister wants to be a vixen”, I said grinning.

“Oh shush it” she said, laughing.

Meg certainly had grown up. It seemed like she had just gradated high school and was still that geeky, petite girl with braces and too many freckles to be beautiful. But, she was turning into a real beauty. It figures I’d have to worry about guys after she was no longer under my parent’s constant supervision.

The smell of cheap, vanilla body spray entered the area. Glancing up, I saw our waitress, an unnaturally blonde woman who wore too bright of a shade of red lipstick and had failed at an attempt in coloring her cheeks rose and had instead achieved looking overly flushed.

“I’m Sue. What can I get you to drink?”, she asked, smacking her gum as she glared down at her note pad.

“Um, iced tea for me.” I stated.

“Coke for me!” Meg chimed in. I glanced up at her, arching my eye brow, just a month ago she had sworn off of sodas because of her supposed weight gain.

“What? I’ll go to the gym…I get headaches.” She retorted defensively.

“Uh-huh…” I answered, glancing at the waitress as she slumped away.

“So, what’s my big brother been up to lately? Any good news stories?” Meg asked while twirling her napkin and silverware around in a circle on the off-white table top.

“You know it, the Daily Life section leads to such late breaking news stories such as Grandma reminiscing over the dog who found Little Tommy in the well in the 1950’s or Uncle Joe recalling the opening of Fred’s Drug Store during the end of World War II…” I flashed my eyebrows up, halfway rolling my eyes, “real exciting, edge of your seat kind of stuff.”

“Andrew! You’ve only been there for like what? A year? You can’t expect to get all the great stories right away…maybe that dog was a hero…” Meg said, sympathetically, with a bit of a giggle.

“Yeah…just may…” I cut my sentence off.

I struggled to put my thoughts into focus. Near the piercing cow-bell chimed door a woman, at least 10 years my senior, sat alone. She sat like a proper lady, or at least what I envision a proper lady should sit like, hands folded, fingers lightly intertwined, placed atop the white plywood tabletop. She stared out the window, her mahogany curls shifted lightly upon the milky whiteness of her cardigan. Her mouth opened slightly as she sighed, revealing pearl white teeth, standing out in sharp contrast to her rose colored lips. Her eyes averted downward, then suddenly shot upward, right in my direction. A hint of shock showed in her face, as her eyes widened and her perfectly arched eyebrows shot up. She looked as if she had seen a ghost rather than caught a man staring at her. My skin begin to heat under her confusingly terrified stare. I quickly averted my eyes downward, looking back up in time to see her jogging down the street, with the cowbell ringing out of control from the slammed door.

“Andrew! What’s wrong with you?!” Meg slightly yelled, narrowing her eyes at me. “Am I really that boring?”

“No…there was this woman…” I answered, still staring at the now empty table.

“Oh God…you and women. I’m going to tell mom you’re trying to pick up dates while having dinner with me, that’ll give you an earful.”

I half way smiled, not really listening. My thoughts were focused upon the fearful woman and her apparent knowledge of me.

Chapter 2

I got into my car, tossing my messenger bag and notepad into the passenger seat. Glancing at the clock, I shoved my keys in and shifted into reverse. I was late, yet again, for an interview with some old lady reminiscing about her youthful days long past. My afternoon had been wasted thinking about the woman with mahogany curls from the diner. I had searched my mind for any connection I could possibly have to her. Did I know her from somewhere? Had I met her before? Did we have a mutual friend? I didn’t think I had that bad of a memory. I just can’t think of any other logical reason for her to look as if she was caught red handed and I was going to scold her. Perhaps she had just mistaken me for someone else…that was logical.

I parked my car in the driveway of a blue and white house, complete with a white washed porch and rocking chairs. Perfect, another afternoon recalling Aunt Mae’s old days at the county fair. I got out, grabbing my bag and my notepad and made my way up to the door. I completed three sharp knocks on the door, slightly shifting the bags weight to my right side. The door opened and the scent of vanilla wandered through.

“Hello, you must be Mr. Ashley,” a soft, playful voice questioned.

I looked up, away from my bag, automatically extending my hand. I stopped half way. Staring directly at me were the same ice blue orbs from the diner. My eyes widened in confusion. I searched the rest of her face, finding the same rose lips and nature sable blush to her cheeks. The only difference was the hint of gray in her mahogany hair, which was pulled into a bun. My mouth opened and I gasped slightly. Standing in front of me was the same woman from the diner, with one distinct difference, she was 20 or so years older.

These are just some of my favorite pictures I have taken from various trips, including Disneyland, Colonial Williamsburg, and of course, my backyard, Magic Kingdom (WDW).

Well, my first cancer scare is officially over. Actually, this should be my second. Let me clarify a bit.

When I was 19 I was having all sorts of bowel problems that I promise not to scar your minds with. I went in for a colonoscopy and discovered I had polyps. They turned out to be benign, so I suppose that was my first true cancer scare.

In October of this year I began having horrible leg pain, to the point where I couldn’t walk. My doctor brushed it off as bursitis. The ER told me it was shin splints. I went back to my doctor and demanded an x-ray or anything at all to discover what was wrong. She ordered an MRI and a 5 cm tumor on my leg was discovered. Of course, I was scared. I thought I was going to have some horrible bone cancer at age 22. Or better yet, that this tumor was connected to my liver tumor. Did I forget to mention that I also have a 3 cm tumor on my liver? Well, I do, but thats saved for later. Anyhow, I went in for surgery on Tuesday, to discover whether my bone tumor was benign or malignant. If it was benign I was in for a hospital stay, if it was malignant, I could go home and discuss options with my doctor. To say the least, I was hoping for a hospital stay. It turns out my tumor was a aneurmysal bone cyst…nothing at all to worry about. It’s hard to believe that the doctors brush these things off like they are nothing. There was still a tumor in my leg that made it impossible for me to walk, it was still frightening and painful, but my doctor says, “Oh, it happens a lot.” I sometimes think that doctors forget that their paitents are people too. People that do not enjoy being in pain and also do not enjoy going through surgery. Especially at age 22 for a tumor that they shouldn’t have until they are around 40.

So, my second cancer scare was a success. Now, for my third, my lovely little liver tumor…I’ll have to wait until next month when I can walk again to find out.

November 15, 2008

So let me start off by saying that I am in no way a gifted poet. I love reading poetry but have never had a knack for writing it. But, I had a dream a few nights ago that sort of led me to this:

Shutting my eyes to blackness and opening then to a deep, piercing blue,

My hair flowing around me like a sheet of velvet,

With a cool calmness engulfing me, coaxing me to stay.

Transparent bubbles slowly ascent to the surface above,

Floating to the yellow halo, swaying in the waves,

Beckoning me to follow them into the unknown bliss.

 

I have no title, it was just a strange dream about being in the ocean that prompted it. That is all!

People have often asked me why I chose anthropology as my major. I usually get the same comments, such as “Well, that isn’t practical” or “What in the world are you going to do with that?”. Or, there are times when I get a confused look and people then question what anthropology even is.

I went into college as a mass communications major. I had always dreamed of becoming writer. I’ve been writing since I can remember. My first book (which my mom still has somewhere in the house) was entitled “The Dog Tom” and about a lost dachsaund and the children watching him trying to frantically find him. Anyways, I’ve gotten sidetracked. I always wanted to be a writer and believe I still do. I thought mass communications was the way to go to become a writer. I was involved with my high school newspaper and yearbook, so what could be better than becoming a journalist?

I never really knew what anthropology was until I entered college and was placed in “Introduction to Anthropology” with Dr. Davis-Salzarr. On the first day of class she had an entire montage of exactly what anthropology was and what the sub-fields dealt with. Within this montage, she had a quote by Ruth Benedict, which instantly inspired me.

” The purpose of anthropology is to make the world safe for human differeces.”

I believe it was at this moment that I changed my major. Some people may think I’m crazy for changing my major and thus, my life just because of a quote. But honestly, I’m happy with my decision. It opened me to a new world of thought and has taught me so much about cultures across the globe. Somehow, I feel more connected. I see the both the stark differences and the vast similarities of people everywhere and I guess I just don’t feel so alone anymore.

 Now, there are the main questions, or the “essentials” that everyone ask me upon hearing what I hold a bachelors in. Do I have a well paying job? No, as of right now I work at Disney, but I do LOVE my job and come into contact with people from around the world on a daily basis. Do I know where I’ll be in 5 or even 10 years? No clue. But, what I do know is that changing my major has made me a better person. Anthropology has strengthened my mind, my morals, my spirituality, and my heart. It has opened my eyes to the world, something I don’t believe mass communications could have done.