August 5, 2010
Alas, another birthday has come and gone. I’m now 24 years old. I’ll admit, I was very enthusiastic about this year’s big day for me…mainly because I feared that it wouldn’t happen earlier in the year. Brandon’s parents had Callie for Saturday and Sunday night, so I did some celebrating. Saturday night I went out to eat with Melissa and Kristina and then we ventured to Rising Star, an awesomely fun live karaoke bar, and met up with Sherry. I believe the employees there know me well now, due to my mobility issues. Afterall, it’s not everyday you get a 20 something year old wandering in with a sit and stand.
On Sunday, Brandon and I slept in late and went to dinner at the Grand Floridian Cafe. We ate during a monster storm and the power flickered on and off. After that, we headed to Beach Club to see Callie and my in-laws, and then went to Magic Kingdom for some fireworks and Hall of Presidents. Ah, the birthday celebrations of a history buff. Brandon also purchased some “Pink Sugar” lotion from Basin, which smells fantastic, I highly recommend it… if you can get past the jaw dropping price.
All in all, I had a great birthday. I’ve definitely got some updating to do concerning my physical therapy and health, but it’s late and I’m tired. So I bid you adieu!
July 6, 2010
Lazy day at Epcot…
April 17, 2010
My surgery was Wednesday. I don’t actually remember much from that day, I was knocked out pretty much all day. Surgery seemed to go well, they ended up using a bone prosthesis instead of a metal rod for my tibia and my knee replacement also seemed to go well. I also had a skin graft done, so my upper thigh feels like I have major rug burn since they took the skin from there. Yesterday my wound vac (the thing that sucks the gross stuff out of my skin graft area) had to be changed and I saw my skin graft. I wanted to cry, it looks disgusting. They had to put it through a mesh thing prior to putting it on and it just looks so gross. I’m hoping eventually it will look semi normal or I’ll most definitely be wearing pants a lot. Another downside is that i will probably have drop foot forever now. The tumor engulfed my perioneal (nott sure of how to spell it!) nerve, which is what controls your foot, so I’ll be stuck in a brace forever. My surgeon said I may get up to 30% of it back but that’s all. Luckily, I had foot drop after my August surgery so I know how to work the brace and everything. It’s also in my favor that my father in law is a podiatrist so I can get the latest and most advanced foot braces.
As for my leg, I can’t move it for 6 weeks, it has to remain straight. I can get up as long as I have my stabilizer on. Right now I’ve only gone from the bed to the chair because I still have an epidural in for pain, so even my “good” leg is weak. The most amusing thing was Thursday night I could not get up, we tried for 30 minutes. So, my nurses had to put this thing underneth me to lift me into bed, it was kind of like a swing. Actually, picture in your mind the thing they use to move dolphins into water…that’s it! It was pretty funny. I also had to have a blood transfusion, which I did not have a reaction to this time!
I’ve had a 102 fever since my surgery that won’t go away. Blood cultures take 48-72 hours to grow so I won’t know if I have an infection until Sunday or Monday…I really, really hope not. Somehow I always get the rare side effects.
I won’t find out how much of the tumor died for 2 weeks…so it’s a waiting game. We’re hoping for 90% or over, that is considered a success! If not…even more chemo and two more drugs. If it is 90 or over, then chemo until September!
That’s about all for now. I should go home on Monday if my fever goes away and I don’t have an infection…so I’m thinking happy thoughts! I may be in pain but at least I get a small break from chemo. Think happy thoughts for me!
February 27, 2010
Time for an update. I had chemotherapy in-patient again from Saturday-Wednesday. This time I got a lovely dose of Methotrexate, which wasn’t half as bad as the Adriamycian and Cisplatin combo I had last time. I was actually awake and coherent during my stay, which was probably bad because I was bored out of my mind for 5 days. I tried to occupy my time with reading, writing, and wedding planning. I go back in tomorrow for yet another Saturday-Wednesday stay and then again next Saturday-Tuesday. Having only two days home is a bit depressing. You never know how much you miss your own bed, being able to sit on your porch, or just sit on your own couch until you’re stuck in the same white walled room with beeping machines hooked up to you for days on end. They even let me out early, my levels were .1 over but I was begging them at that point! I told them to give me more stuff to pee (lacix, I believe it’s called?) so I could flush that folic acid out of my system! I was up every 20 minutes tripping over the power cord, my poor nurse was having a nervous breakdown from me!
I’ve reached the point where I’m having mini meltdowns. Callie talked to me on the phone in the hospital and cried and asked when I’d be home. It broke my heart. She’s far too young to understand the severity of the situation, which in a way, I’m thankful for. But, at the same time, it hurts to know that she’s upset when I’m not here.
Today I attempted making grilled cheese and had a mini freak out because I could hardly stand up long enough to do it. I was such an active person before all of this happened. I just sat on the floor and cried because I was just so tired. Poor Brandon and Callie were bewildered as to why I was on the floor crying, swearing under my breathe about grilled cheese. I’m glad they put up with me, I’d certainly think I was insane. At least I didn’t burn the sandwich.
I think that the realization that this is my life until at least September has really hit me. And after April, I’ll be in physical therapy from my knee replacement and tibia replacement, which is like a double whammy with chemo. Everyone thus far has commended me on my spirit and positive outlook…I’m trying not to lose it but, it’s just difficult when you literally feel ill almost 24 hours a day.
There is also the dealing with “looking like an alien” as I call it. I was upset when my hair fell out, okay with my leg hair no longer growing (one nice perk!), but not so okay with my eyebrows and eyelashes falling out. I’m ordering some “real human hair” (I hope!) eyebrows for the wedding and will don some fake eyelashes. Other than that, I wear my glasses around a lot so dirt doesn’t get into my eyes. 😦
At least this hospital stay I’ll have my wedding invitations to work on. My oncologist okayed the date since it will be on my 3 week break between my last pre-surgery Methotrexate chemo and my surgery. So, April 10th is the day!
February 18, 2010
Yesterday was a bit difficult for me. I knew this day was coming and actually overdue since I’d been putting it off. I got my hair cut into a short bob last week to make the transformation less dramatic. Still, even with cutting it, it was a bit heart breaking.
This week my hair started to fall out, a lot. I’ve had to clean off the bed every morning, the shower drain has been getting clogged, and my hair thinned out so much I had to don my wig the other day when we went out. My head was actually hurting from my hair falling out, it was so sensitive I couldn’t even touch it. I’ve been wearing scarves and hats so my hair wasn’t falling out all over the house but yesterday I decided enough was enough and I finally got it shaved. My head feels very strange and cold. I don’t quite feel comfortable enough to go without wearing a hat, scarf, or my wig out in public but I’m going to try and go au-natural in the house…as long as Brandon doesn’t freak out. 🙂
Callie and my mom were with me when I got my head shaved. Callie got a bit upset, asking if we could put it back on, but I think she’ll get used to it after a while. She was so worried about the lady cleaning up all of my hair and kept asking “Will they clean up the mess? It’s messy!”. She cracks me up.
Anyways, I’ll be brave and post a picture. Being bald is nothing to be ashamed of. I know it’s cliche but beauty is more than skin deep. On the upside, it takes me much less time to get ready now that I only have to do my makeup. Also, not shaving my legs or armpits is an added bonus. I think in a way this experience is just opening up my eyes to the fact that society puts so much emphasis on a woman’s beauty or a man’s good looks and tries to fit everything into such a small sliver of what’s acceptable. I thought I would care if people stared at my bald head or my head scarves but honestly, I don’t. I’m still me and I still feel like me, that’s all that matters.
In other news, I discovered that my chest pain is due to pericardial effusion, or fluid around my heart. Right now, it’s a small amount so they are just going to monitor it after every Adriamycian cycle I receive. Of course, I have to get one of the “rare” side effects of the chemo!
Other than that, I’m doing well. Today I felt very sick but hopefully tomorrow is a better day!
“Laugh as much as you breathe and love as long as you live.” – Author Unknown
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!
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
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!
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.
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.
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.