Treatments and Living Life

I'm into week 3 of my photopheresis treatments. I'm finally settling into the routine and what to expect. Every Monday and Tuesday, I arrive at Main Methodist Hospital in San Antonio and head to the 10th floor Apheresis room.

My blanket, my laptop, and my amazing mother are always with me. It's quite the prep-work to get me ready to start the treatment. I put on a cream form of Lidocaine (a skin numbing medication) an hour before treatments, which does little. It does however, numb the most superficial part of the skin, so I figure it's worth the effort. The nurses have to create a sterile field, which is an area that is free of contamination from microorganisms. Nurses must wear sterile gloves, and it's a two person

job. They must clean the port site, allow it air dry, and then prepare to insert the needle. The needle is not inserted in the same place twice for as long as possible, so the nurses stick in a different place, moving in a clockwise motion every day.

The needle insertion is very painful, but I think I'm getting used to it. The most difficult problem that we have had is securing the needle. It is large, between one and two inches long, and has no sort of apparatus to hold it in place. Because of this, I'm always covered in tape and gauze. Still, today, the needle popped out, and had to be pushed back in which was not pleasant and got my clothes sprayed in blood. I have to say though, I felt pretty cool and tough walking out of the hospital bloodied.

The actual photopheresis treatment is a 5 step process in which all your blood is filtered out and subjected to the UV radiation. I can only guess that it's because the human body holds about 5 liters of blood and doctors don't want you losing too much of it at one time. The final process of putting the blood back in your body can take anywhere from 15 to 90 minutes, just depending on the day. The entire process takes between 3 and 5 hours and is exhausting. I have watched them start cleaning the machine after my treatments and I noticed that not all my blood is put back in my body. A guess would be that I lose between 1/2 and 1 cup in every treatment, just from all the leftover blood I see. Because of this, I can feel weak, even faint after.

My entire body hurts after the treatments. It's difficult to explain other than saying I feel uncomfortable all over. My body can be sore and achy to the point where I need pain medication. This lasts through Wednesday, and I am pleased to say that by Thursday, I do not need any narcotics and am basically pain and exhaustion free.

Being the first person in Texas to use a Vortex port for photopheresis, I am a literal pin cushion for nurses to learn about this new technology. It's both a blessing and a curse. Sometimes, the nurses screw up and have to insert the needle 2 or 3 times before they are able to access the port successfully. This causes a lot of pain and anxiety, but there is a huge upside to what I am doing. I see other patients who have the traditional type that sticks out of one's neck. I can't imagine having two lines protruding out of me all the time. This Vortex port is so low maintenance and much more ascetically pleasing, especially for a young woman. In fact, I even got to lay out at Barton Springs on Saturday with one of the sorority sisters and I didn't feel self conscious at all!

On an even bigger note, by demanding this more subtle looking port, I can only pray that I am teaching an entire hospital system how to use a more modern medical device. I hope that because of the results with my Vortex port, patients in the future will have the option to come into the Methodist system with nurses already familiar and willing to use this tiny access port as opposed to the traditional line. If there's another Mary Burkholder type girl out there, who one day may need photopheresis in San Antonio, I hope she too will be able to wear a bikini in the summer and still feel pretty.

The past few weeks, I have felt almost high, despite the fact that my health hasn't improved one iota. I have been filled with so much joy. I love life again and no longer feel cursed by illness. Every time that I start to feel down about life, the fact that I'm not graduating with my friends, and not working, I remember that God has a different, still wonderful plan for me. He is telling me that school will be later. I'm applying to restart in the Fall, by the way! For now though, I need to do something else. Recently, I've made food for my friends that were taking finals. But now, I want to do something bigger. I have a general idea of what I want to do and how I want to doit, and I'm so excited to test this idea out. If my trial run this week is promising, you will all be hearing about it soon! Thank you for your continued prayers and support! They are lifting me up more than I could have ever dreamed of!

Keeping Up Appearances

A person might see me driving around town some time, pull up in a handicap spot (yes, I have a permit), and roll their eyes over witnessing a privileged little princess getting the primo parking spot. They may scoff, "There's nothing wrong with her! Save that for a real handicap person!"

Little do they know, had I not been able to park so close to my destination, I would be struggling to breathe.

To an outsider, I look like a slim, well groomed young woman. I'm well dressed. I wear enough make up to look healthy. I try my hardest not to look sickly. After all, the Gospel of Matthew says, "And when you fast, do not look dismal, like the hypocrites, for they disfigure their faces that their fasting may be seen by men. Truly, I say to you, they have received their reward. But when you fast, anoint your head and wash your face, that your fasting may not be seen by men but by your Father who is in secret; and your Father who sees in secret will reward you"

OK, let's get real here, I really do hate when people play up their illnesses to their advantage, or act more dramatic than is necessary. Like REALLY hate it. But also, I'm a young woman in my early 20s! I want to look healthy! I want to fool the world and everyone who doesn't need to know that I am the healthiest thing they've ever seen! But I have secret: my hair is falling out and has been for months. There's several reasons that this is happening:

1. I'm on blood-thinners which cause hair loss. I'm stopping those tomorrow though. It's been over 6 months and after a scan next week, I won't have to think about blood clots anymore.

2. I'm sick, duh. My body is poorly oxygenated at times.

3. I've been stressed in the past. I can openly admit that I let the stress of a serious illness, among other things, get to me. I can honestly say that now I have such a better grip on things though. So hopefully that factor goes away.

4. I've lost a lot of weight. I went from being 114-115 at my heaviest to 81 at my lowest. Definitely not healthy. I'm steady now in the low 90's and trying to eat right to keep it that way.

I'm sure everyone around me has noticed my extensions that I clip in to try to achieve the "Texas" hair that I so desire. I also need to add that Heather at Topaz Salon in Austin did a great job of that for my formal last week, if anyone in Austin is looking for a hairdresser! This past week, I finally broke down and saw a dermatologist about my hair loss. Unfortunately, for the reasons I named above, there was not much help she could offer me other than trying to stay healthy, relaxed, and patient about the process. With that being said, please offer any personal tips and tricks your may have to help hair grow quickly, and thickly! I'm desperate!

On a completely gratuitous note, I also just started on Latisse yesterday as well. The product promises to help you grow more of your own lashes, which are also longer and darker. If I can't have hair on my head, maybe having some on eyes will be an adequate substitute. Here's my before picture at Week 0. I'll post another at Week 4 and Week 8 and so on! But seriously, hair tips! I want to keep looking like I don't deserve that handicap spot! Love, Love, Love!

We Got Him

This is about a week late, but it's given me some time to mull over the death of Osama Bin Laden. I always think it's better to wait when you have strong feelings on something and sleep on it, think it over, before you put your opinion out there. I felt such strong emotions. And after a week, I'm ready put out my thoughts (for what they're worth) on the situation, from a Christian prospective. Beginning with some of the statistics from September 11, 2001, via New York Magazine:

Total number killed in attacks (official figure as of 9/5/02): 2,819

Number of firefighters and paramedics killed: 343

Number of NYPD officers: 23

Number of Port Authority police officers: 37

Number of WTC companies that lost people: 60

Number of employees who died in Tower One: 1,402

Number of employees who died in Tower Two: 614

Number of employees lost at Cantor Fitzgerald: 658

Number of U.S. troops killed in Operation Enduring Freedom: 22

Number of nations whose citizens were killed in attacks: 115




Ratio of men to women who died: 3:1

Age of the greatest number who died: between 35 and 39

Bodies found "intact": 289

Body parts found: 19,858

Number of families who got no remains: 1,717

To those of you who remember that day, I'm sure you can't erase the images of people jumping from the 90th floor of the World Trade Center rather than be incinerated by the flames engulfing the towers. You probably remember the phone calls played from passengers on United flight 93 to loved ones. It was a day that was truly scarring for every American who was glued to the TV, watching these events unfold. The "mastermind" behind these attacks was a name few of us were very familiar with: Osama Bin Laden, who had previously been quoted as saying: Allah has ordered us to glorify the truth and to defend Muslim land, especially the Arab peninsula ... against the unbelievers. After World War II, the Americans grew more unfair and more oppressive towards people in general and Muslims in particular. ... The Americans started it and retaliation and punishment should be carried out following the principle of reciprocity, especially when women and children are involved.

Men, think of your wife. Mothers, think of your children. Osama Bin Laden would have killed them if he had the opportunity. I've seen so many Christians posting things on Facebook, Twitter, and speaking through radio about how they find it hard or nearly impossible to rejoice in another life lost. Many note the words of Christ saying "turn the other cheek", which is understandable when it comes to a lie or sour feelings between an acquaintance or even a family member and yourself. But to do the same with the mass murderer, life ruiner, a

person who has maimed tens of thousands of lives, is wrong and only inviting more death.

I take you back to the book of Exodus, when Moses parted and crossed the Red Sea. After all the Hebrew people had safely passed, he once again raised his staff, and the water came and engulfed the Egyptians. After this, Moses composed a song of thanksgiving to the Lord, which can be fully found at Exodus 15:1-18. Here is an excerpt:

² “The LORD is my strength and my defense;
he has become my salvation.
He is my God, and I will praise him,
my father’s God, and I will exalt him.
³ The LORD is a warrior;
the LORD is his name.
⁴ Pharaoh’s chariots and his army
he has hurled into the sea.
The best of Pharaoh’s officers
are drowned in the Red Sea.
⁵ The deep waters have covered them;
they sank to the depths like a stone.
⁶ Your right hand, LORD,
was majestic in power.
Your right hand, LORD,
shattered the enemy."

I have seen quotes from inspiring figures in the past, such as Dr. Martin Luther King Jr condemning taking human life, but I felt it was important to go to the Word. Though it is true that God does not "delight in the death of the wicked", one can only wonder if his disappointment lies more in the actual killing or in the fact that one of His creations turned away from Him and had to lose his life for because of that.

To those of you who are against capital punishment under any circumstances, obviously there is no convincing you that the killing of Bin Laden was just. To those of you who are against capital punishment, but relieved in the death of Osama Bin Laden, I ask you how you can condemn the death of a man who has killed one and savor the death of a man who killed thousands? Either way, a life was taken and a group of family and friends was emotionally destroyed by the actions of that man.

Usually, I'm very apathetic on matters like this, but for some reason, the reactions I saw of solemnity were very upsetting, especially when God was used to justify those feelings. Twisting the Word of the Bible to fit one's personal views is exactly what the Islamic extremists have done with the Qu'ran. I will be the first to admit that I do not understand the mind of God. I look to the Bible, and try to figure out what one should think about this situation. But when something is so upsetting, so mind boggling as what happened on September 11, 2011, it is hard to find a concrete answer of how one is supposed to feel about the death of Osama Bin Laden. I just wanted to share my voice along with some Biblical truth for everyone to digest. And in the words of Forrest Gump, "That's all I have to say about that".

When the righteous prosper, the city rejoices; when the wicked perish, there are shouts of joy. - Proverbs 11:10

Never Take Yourself too Seriously

“Laugh at yourself and at life. Not in the spirit of derision or whining self-pity, but as a remedy, a miracle drug, that will ease your pain, cure your depression, and help you to put in perspective that seemingly terrible defeat and worry with laughter at your predicaments, thus freeing your mind to think clearly toward the solution that is certain to come. Never take yourself too seriously" - OG Mandino

A Shot to the Heart

I had my first photopheresis treatment today. The flying to Kansas City, the port placement, and the recovery seemed to be the worst of it. Then there was the waiting. A group aphaeresis experts had to coordinate their schedules and come in from Chicago, Phoenix, and Round Rock to oversee my first treatment. I showed you in an earlier post what the port looks like. Well here's what the port looks like in me. I circled it, because the port is actually pretty easy to miss. It's been a blessing how inconspicuous my little Toto (thanks Kyle!) looks, and cosmetically, I couldn't be happier with the results. But now it was time to put Toto to work.

The needle used to access a vortex port is large. And it thick. And it's scary. I'm a little girl with little veins who is used to being poked by butterfly needles. So this big thing coming at me caused a lot of anxiety. The nurse tells me to take a deep breath in, so I do, and POW (see video below) right into to chest. My reaction was far less dramatic, however, that's how I felt on the inside. The amount of instant pain took my breath away. I couldn't speak, cry, inhale, or exhale. And the worst part about it was that they missed! The entire needle stab had to be done once again. After that trauma and some ativan, was able to relax. The procedure was long but went smoothly from there. I'm tired but not as exhausted as I thought I would be. I feel blessed to have made it through this first day successful.

Toto has done it's job for today. And he will have to come through tomorrow. I was given lidocaine to put on the port tomorrow so I will be numb and not have to experience the unreal pain I felt this morning. But in the end, if pain, sticks, and stabs are what it takes to get me well, bring them on all over my body. I'm 100% committed to this treatment. I have confidence in my doctor and the sweet, gifted nurses in aphaeresis, I feel comfortable asking questions, and I am at peace with my decision. This small step forward has helped me see more of the future I imagine which includes graduating, nursing school, a husband, a family, and helping other like me for as long as I'm blessed to be on this earth.

Limitations

Today has been one of those days that was unexpectedly difficult. As one who wishes to rise above any malicious talk, I won't divulge names or personal details. For a little background of the day, I was basically seen as unreliable because of my physical and past emotional problems, which was something I had never heard before. If you read this regularly, I think you can all appreciate the strides I have made. I am at a stable place with my breathing. It isn't normal, but I try my hardest to live a normal life. I push myself through pain to make sure I remain the good daughter, sister, and friend I was before all of this, while still keeping my health as a top priority. I have even flown across the country to make sure I get the best of the best for every medical need. Restoring my health is my number one goal.

I am recovering from major depressive disorder and grief disorder. I've reached a level of acceptance with my condition. I am huge proponent of seeking help and not shying away from medication, as long as it's only temporary. I have gone from darkness to light, hopeless to optimistic, and melancholy to joyful. Until recently, I was unable to see all the blessings in my life. Now, every day, I find new things that make it worth living to the fullest.

With all the progress I feel I've made, it's hard to accept someone seeing you as undesirable for the things in your life which you can't change, although you'd give anything if you could. You work so hard, battle things that most people will never know about, and are still undersold. So I went to some of my biggest fans: my siblings. I immediately felt validated again, and loved tremendously. My brother, Kyle said something so sweet and so profound, I had to share it with you all:

Your "limitations" are yours. Everyone has them. Love is cool because it sees those "limitations" as more reason to love, not a reason to run.

So thank you to all of you who have been able to see past the sickness, and have acknowledged the strength that the last 7 months or so have required. Thank you for seeing my limitations and loving me, not just in spite of, but because of them. You are a big part of where I find my joy amidst the pain in my life. I will never be able to repay you. I can only continue to try and be the best daughter, sister, and friend to each and every one of you.

Love, Mary

God's Promises are Always Kept

Today is Easter, the celebration of Christ rising from the dead and fulfilling His promise to pay for our Sins. After Jesus was crucified, many of his followers assumed that they would never see or hear from their Messiah again. Just as he did back then, God still keeps his promises.

A few months ago I was physically ill, mentally confused, and spiritually broken. I was in a place so dark, that I could see no light ahead. Yes, I had been sick before. For some reason though, this time, the sickness had entered into my soul. I lived from day to day, at times hour to hour, just trying to make it to the next one. I was unable to see a future for myself and unable to dream of one day living a happy life.

There were times, that I uttered the same words that Christ said on the cross: Eli Eli lama sabachthani?

In English this is translated, "My God, my God, why have you forsaken me?"

I truly felt abandoned by God. For the first time in my life, I questioned everything. While I never doubted the existence of God, I did doubt the ability of Him to intercede on my behalf. Was God just an onlooker to my life? Did he not guide our minds, hearts, and actions like I had once believed? I was tortured by these questions.

But since that time of darkness, God has finally led me back into the light. After a stream of unsuccessful and frustrating psychiatrists, I finally found one who listened to me. He had the wisdom to prescribe me the correct medications. From there, I began to see more clearly.

I wont forget the day I first noticed that depression had begun to subside. I was on the phone with my friend, Omar, having a casual conversation. Once I got off the phone, I realized that during the our talk, my tone of voice had changed. It was lighter, more joy filled than it had been in months. I was beginning to heal. And though it was not on my timeline, I knew it was on God's.

Since then, I've found myself slowly falling back in love with the things I enjoyed in my old life, before I became ill. In my times of great sadness, I had stopped cooking, and although I dearly missed it, I had no energy to prepare a meal and no desire to eat it. My weight had bottomed as low as 81 lbs and this only made my depression worse. I hated looking at an emaciated young woman in the mirror. Slowly though, God has brought back my appetite. I've gained almost 10 lbs in the past two months. And I've been cooking again, which has been like rediscovering an old friend. I feel better about my identity, both on the outside and inside.

I cannot compare my suffering to that of Christ on the cross. However, I do feel, like Jesus, that I suffered this for a reason. The only explanation I have for being so public on such private matters is because I pray that if anyone is also suffering mental or physical afflictions, he or she would find this and realize that there are brighter times ahead. It may not be tomorrow, but you will be healed eventually to an extent.

Remembering the days that I felt to hopeless and alone, I realize that I would never want to relive that. I do not consider my struggles as blessing or something that I deserved. But in hindsight, I can look back and say that I have grown from it. I can now feel empathy towards others struggling with depression and my heart has grown to be more compassionate to those around me.

Just like Christ, I felt forsaken by God. But just like God promised his Son, I was delivered from the darkness and back into His marvelous light. In that light I stand, still physically broken, but emotionally resilient. I would take this physical pain over the emotional unrest any day. Even though my body may be limited in it's abilities, my soul is free. Free to love my neighbor, free to laugh until I cry, free to face my future without fear, and most importantly, free to praise my God for all that He has done for me.

So today, as I celebrate the resurrection of my Savior, I will also be praising God for more selfish reasons. Just as He brought Christ back from the dead, He did so for me. My heart and soul are alive once again. I have been restored and I cannot be begin to articulate my gratitude. So, Thank you Father and Happy Easter to all.