Rock Chalk and Port Talk

If you know me well, you know my heart belongs to Texas. If you've been in my condo, you'll see it's a shrine to the Lone Star State. I have the famous quote by Davey Crockett (if you don't know it, you don't deserve an explanation) on a magnet on my fridge. My walls are covered with Texas Country concert posters, all neatly framed. There's Autographs from famous Texas athletes, and a poster my friend stole from 6th street which pictures the flag of Gonzales along with an H-Bomb, which has been named by it's manufacturers to the the "shot of the Republic".

I promise with all that, I still have plenty of feminine things mixed in such as fur throws, wine bottle candelabras, faux leather lampshades, and crushed velvet valances which I am proud to say I drilled in myself.

My music tastes are also purely Texan. I could slap Lady Gaga for her blasphemous "Judas". I am so behind on what is on mainstream radio, it's embarrassing. I just can't seem to get my iPod off of more humble music. My current obsession is Turnpike Troubadours, thanks to my dear friend Casey Lee. And anytime I can dust off my cowboy boots, grab a koozie, and get to a concert, I'm there. The point is, I think the best of the best is all in Texas. Turns out, that's not always true. For photopheresis, I needed a port put in for IV access.

Everywhere in Texas was pushing a broviac port, which I've pictured here:

Well, *in Valley girl, sorority voice*, excuse me, but I'm 22 years old and I'm in a so-

ror-ity. I sort of have to go lay out and float the river this summer and wear like cute dresses to date parties.

Well in all seriousness, I didn't want a giant port sticking out. Who would? So I did some research and had known from friends about ports that go underneath your skin and are hardly noticeable. Unfortunately, there's an idea here in Texas apparently that if it aint broke, don't fix it. They've been using broviac ports for years on photopheresis patients and had no problems. Why try something new that requires different supplies, additional training, and more of a headache for them?

Thankfully after some persistence, they agreed to let me go ahead with this new kind of port known as a vortex port. This little guy goes under the skin would totally ease my concerns of looking like a mutant. The vortex is the pretty, little, round apparatus pictured, if you haven't figured that out already. Because Texas is only familiar with implanting broviacs, I had to find somewhere to put this device in. This quest led me to KU Medical Center in Kansas City.

As much as I'd like to say the nicest people are from Texas, Midwesterners are pretty darn sweet. They accommodated me from the second I walked in the doors. There was little waiting time once I checked in. I requested IV therapy for placement this morning, and within minutes an IV therapy had arrived and successfully started my line.

There was some unprofessional drama where a male nurse and a female nurse got into a huge fight. The female nurse stormed off crying and then all the other nurses talked badly about her. However, once she returned, still sniffling, those same nurses were there to give her a shoulder rub and comfort her. It was probably something a patient shouldn't witness, but I have to admit, I loved watching it all go down. It was like a reality TV blowout right in front of me.

The drugs were amazing of course in helping me relax. The medication given in called versed, which leaves you conscious but forgetful after the procedure. The main complaint of everyone who worked on me was that I was a bit too talkative, but what else would you expect?!

The pain afterwards has been unpleasant and I would probably pay some big money for some pain killers tonight. I guess I'll just have to wait it out until tomorrow. God willing, this is the worst of it all. I am too pleased about the outcome to go on and on about pain. the port is less noticeable than I imagined. I don't see it really affecting any of my fashion choices in the future. So thank you, Kansas. You aren't too bad after all.

Tomorrow I head back to Texas; Back to hot temperatures, Texas Country music, my wonderful friends, and hopefully photopheresis treatments. My goal is to start Easter Monday but there is still a question mark on if that will actually happen. I ask for your prayers that things move swiftly and results will show sooner rather than later.

And on a lighter note, I want to come up with a name for my port. Any ideas?

Consuming You and Defining You. What is the difference?

As a good handful of you know, I've been preparing to start photopheresis treatments in a matter of weeks. Recently, it seems that my life has been taken over by phone calls to doctors, nurses, coordinators, and my sister to vent my sheer frustration. And recently it seems the more I hear from these people, the more I want to crawl under into a cave and disappear. I got some devastating news about a week ago that will affect my treatments for the next 6 months of my life. I haven't been able to touch on the subject with most people since I feel so tired of complaining about things that at this point, and in this world, only my God can change. Hosting Rebecca's party forced me to lift myself out of my depression this weekend and put on a good face. Little did I know, that fake smile would stick and become a real one.

I lounged on the comfortable bed in the Driskill Hotel, laughing until I cried, forgetting about my recent troubles. And though the party is now over, I am happy to say that I have not sunk back into the sadness that had overtaken me for the good part of last week. My depression is slowly fading and my optimism is growing stronger. I used to feel hopeless, where as now, I am always looking forward to the days ahead. I've shed an old skin of depression and isolation and returned to be the simple, friendly girl I once was. I still have an illness, but that is only one of the many compartments that composes who I am. My illness doesn't define me now, and even if it kills me, it won't define me then. I will be living a pure, kind, joy-filled life until my time comes. That may be in 6 weeks or in 60 years. Either way, illness will not take who I am away from my family, my friends, or from myself.

This disease will probably kill me someday, but I have already emotionally defeated it and have peace in my soul for the first time in months.

"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love, and to be greater than our suffering" - Ben Okri

Shovels + Rope

There's nothing like Texas IFC Round Up weekend to make you realize there's a lot of trash out there. When you hear a fraternity paid $10,000 to hire a rapper named "Chip tha Ripper" for an hour and his best known single is titled "Bitch, I Feel Good", you begin to lose some faith in humanity. Is anyone still making good, honest music out there? Luckily, yes.

On March 9, when I saw Hayes Carll at Cactus Cafe, I got introduced to a new, wonderful band. Since then I've been listening nonstop to Cary Ann Hearst and Michael Trent's band Shovels and Rope. The music takes me back to another time. Any musician these days who can produce such haunting melodies with a few simple instruments and their voices is worth a listen to.

WHAT?! A post not about dying?!

Who's blog is this???? Mary's blog is supposed to make me feel melancholy, even somber at times? And now she's posting a craft?! What the crap? This girl is freaking bi-polar. But I wanted to show you want I've been spending a lot of my free time doing: PLANNING A BACHELORETTE PARTY! I'm the Maid of Honor in an upcoming wedding for my lovely friends Phillip Sanders and Rebecca Reese! So I had to true blessing to plan this party. I thought I'd share with you craft I came up with for placeholders. It could be for a ladies luncheon, or even kids parties:

CHOCOLATE BAR PLACE HOLDERS!

Supplies needed: Linen Cardstock

Set of colored pencils

Markers of choice colors

Construction paper

Scissors

Stamp pads (of eye colors)

No. 2 pencil that hasn't been used

Thin black Sharpie

Ribbon

Packing Tape

Craft Glue

1. Take Linen cardstock and crap your candy bar as if it was a Christmas present. If you're finding it difficult to cleanly fold the cardstorck, use a bone folder to press the card stock into place. Because this is a heavier paper, I recommend using packing tape to secure it.

2. Then take your construction paper and trace then cut with scissors the hair styles of the guests on his or hers appropriate color. Use your craft glue to affix the hair to the cardstock.

3. Open your stamp pads and pick the color that matches with your guest's eye color. Use the eraser of your #2 pencil to dot in the ink until it is covered to the desire you wish. You may want to try first test this on another sheet of paper. Once you feel like you've gotten the hang of it, go ahead an dot the eyes on with your stamped pencil. Use your thin Sharpie to make eyelashes and draw a simple nose along with a chin and neck if desired.

4. Take out your colored pencils to draw on lips, and if it is a female, little dollops of blush in their perfect shades. Draw appropriately matching eyebrows. Then use a skin tone colored pencil to give color to the rest of the face. Use the colored pencil of your choice to write the guest's name below his or her face.

5. Take your ribbon and wrap it around the bar so it just fitsand then some, then cut. Craft glue it securely to the front, then securely glue the overlap in the back. You don't want this to come undone.

6. Finally, if it as ceremony such as mine, I wrote titles of the guests large in the space left. Other ideas could be "The Smith Family Christmas", "Ladies Night", or "Timmy's Birthday Party" with a large marker and ruler to keep it straight. Then, admire your work!

One More Night to Run

Can you sum up what's going on in your life in less than 5 minutes? Well, with the genius of Hayes Carll, I tried. I hope that instead of sympathy, it brings more understanding. Love you all for taking the time out for listening to me. - Mary

All You NEVER Wanted to Know About Photopheresis

This past Monday, after a month of waiting for an appointment, I met my oncologist, Dr. Shawnessy to discuss the treatment of photopheresis for my chronic lung rejection. The anticipation had been building for weeks. I had lines of questions and was so anxious for some answers, finally. I took Xanax and blood pressure medication to control my anxiety. Finally, I reached oncology and checked in. Everyone around me was sick. It was such a strange feeling, but a good one. I realized I wasn't alone. So many people are sick, some much worse than me. It gave me a less selfish view of my illness. It really could be worse.

A friendly nurse took me back and weighed me (87 pounds *sigh*) took my blood pressure which was luckily normal and took me through a revealing question and answer session.

Have you ever been diagnosed with any type of hepatitis? No

Is there any chance that you have HIV or AIDS? No

Have you ever had sex in exchange for money? NO

It was 3 pages of questions that any normal person would answer no to. I finally stopped and told her, "these are probably all no. Sorry, I'm really boring." But obviously we still had to continue. After this verbal probing, I went back to the waiting room for another half hour before the good nurse came in with some bad news: the doctor had been called for an emergency and would be back in an hour and a half.

All the weight on my shoulders, the anxiety of the unknown; I felt like I had been waiting on this 10:30 appointment forever. At this point, I was on such a high that waiting until 12:30 felt like waiting another week. I went to the lobby, curled up under my jacket, and tried to relax. Despite the unexpected delay, I wanted to be on target and ready to ask all my questions when the time came.

When I finally met the doctor, he was friendly, made eye contact, and did more listening than most doctors. It was so refreshing and comforting. We began the discussion on photopheresis. My first question, as girl who cares about her body image, was if I would need a central line. The answer, which I sort of already knew, was confirmed. Yes. I will need a central line. My biggest concern was that on April 16, two of my dearest friends are getting married. I have been given the privilege to be Rebecca's Maid of Honor. Any sort of line would not only distract people from her, but embarrass me. After discussing this with him, Dr. Shawnessy said there would be no long term danger to waiting until after the wedding to put in the line and start the treatment. A feeling of relief came over me for the first time that day.

For twice a week, I will be hooked up to a machine which will remove my white blood cells from my body, filter them into a machine, and radiate them with a UV light. The light will somewhat confuse my t-cells before they are put back into my body. These t-cells, which are now abnormal will stop recognizing my lungs as foreign tissue and stop trying to kill them off. Over time, some people will see their lung problems level off, a small percentage will see an improvement, and some people will continue to decline. We will begin doing treatments twice a week for a month and then begin to taper depending on how my pulmonary function tests come back over time.

It doesn't sound like the most promising of treatments, but it is much less harmful to one's body than high dose steroids. It would have no affect on my kidney. And side effects are minimal which include infection, feeling tired, or feeling faint.

I hate the idea of having a central line in swimsuit season. I hate being in hospitals and the fact that soon I will be a slave to them once again. But I love my family, my friends, and my sweet little dog. For them, I will fight as hard as I can till there is no fight left in me. My goal is not to think about these treatments for now. My goal is to be kind, to be generous, and be someone for people to look up to, not to feel sorry for. To not stress about what I cannot change and to just work hard to be the daughter, sister, friend, and student and I want to be, as long as I can.

My new favorite quote:

You can't wring your hands and roll up your sleeves at the same time. - Pat Schroeder

The Weight Needs to be Over

The first picture you see on your right hand side is

me at Alpha Phi Formal in May 2010. I was around

108-110 lbs that night and had a fabulous evening.

The second picture is from New Years Eve this 2010. Still a happy face, but much a thinner one.

This has been the story of my life for as long as I can remember. A little too big then a little too small (even a lot too small). Never perfect. Never satisfied.

Looking back, I think ever since entering the most wonderful University of Texas, I have struggled with my weight. It started by drinking too much, eating queso and wings late at night after fraternity mixers, and all the sudden, I was the heaviest I had ever been.

After months of kidney failure, I began to LOSE weight. Sounds great right? I can eat burgers, cheesecake, pasta, CHEESE ENCHILADAS. Except when you are ill, none of those things sound good. I would go through the Luby's line and have a cup of strawberries and some orange jello as my meal. My body was telling my brain to avoid protein rich food to keep my kidneys healthy as long as I could.

After my transplants, some of those habits stuck with me. I still rarely eat meat, unless its a hamburger. I pick seafood over meat every day. I love most all fruits and will eat any vegetable (even brussel sprouts, which are amazing roasted in the oven). But it's a tough transition. It used to be that any I had a craving, I was instantly granted what I wanted because I desperately needed the calories. Running out for a burger at 10:30 had gone from a way to avoid a feeding tube to a way to make my jeans not zip over a 5 month period.

Now I'm on that same yo-yo deal again. I felt I had gained too much weight after my kidney transplant so I cut back on what I ate, joined a gym and went 5 days a week. Though my weight was slow to come off, my body looked better. My clothes fit different. I felt better, not great, but encouraged. Until July, that is.

Once the rejection set in, followed the CMV, pneumonia, and pulmonary emboli, my weight loss became rapid. In the late summer I was around 110-113 lbs on a given day. Today I range in the high 80's. Nothing fits. Skirts just fall off. Shirts that once fit like a glove look borrowed from another, bigger, girl. All my dresses have to be taken in.

I used to always think my arms were chubby, bat wing arms. Now they disgust me in pictures. I feel like the same girl in a foreign body with no derriere to speak of. No hips or thighs to distinguish me from that of an eleven-year-old boy. And as for breasts, well, I've got a couple ant-bites where those should be. But it's always been that way so I can't blame that on illness.

I wonder if this discomfort in our skin is something we all feel as young women, wanting to be perfect. Or maybe, because my years that were so important to the development of a young woman have been so unstable, I have never been able to acquire the positive body image that other girls have by now. I'm skinny today but will I wake up in 6 months and be chubby again? And then what will I wear? How will I look? Will anyone find me pretty?

These are important questions when you think of dating, marriage, career, public portrayal, self care, etc.

However, I need to remember as I obsess over my weight that what comes first is my health. And IF I could just be healthy forever, I would have the biggest, most gracious smile on my face all of the time. And what could be more pretty than that?