Update on Me

As you all know, I went to Vanderbilt this past week to seek a second opinion for my autoimmune disease: Chronic Inflammatory Demyelinating Polyneuropathy. These words have defined me for the past ten years.
Today, my doctors at Vanderbilt told me that after the tests they had run over the weekend (nerve conduction test, EMG, and two MRI’s of my brain and spine), there was no evidence to support the theory that I had this disease, and that my doctors at UAB were wrong. Instead of having demyelinating nerves where the sheath around my nerves deteriorates over time, I have an axonal nerve issue which means that there is an issue with the nerve in of itself. As you might imagine, this was a shock. However, it was also a huge relief because none of the treatments for CIDP were working and we didn’t know why.
My doctors feel strongly that if I get off of the immunosuppressants I am currently on and stop my chemotherapy treatments, I will gain strength and get well over time. However, they are coming up with a long term treatment plan just in case.
I will return to Vanderbilt in six weeks for a check up. From there, we will discuss a course of treatment, if needed. I will no longer seek treatment at UAB.
I wanted to give you all an update on my health because you guys have been such a great support to me not only over these past months but this week especially. Thank you, thank you, thank you. I cannot thank you enough. Your support to me and my family means more than you will ever know. Thank you again.
With love,
Mary Kathryn

Update

So I wanted to tell you about what has been going on in my health life recently. Today, my fears were confirmed and we found out that my chemotherapy treatments have not been successful. In fact, I am slowly continuing to get weaker as my disease progresses.
This leaves us with two options: try a last resort treatment called plasma exchange or seek a second opinion about the course of treatment.
The reason why we would seek a second opinion instead of continuing with plasma exchange treatment is because I have had this treatment before and I did not respond well at all. My blood pressure bottomed out and my doctors had to call the crash cart. That was ten years ago. If we sought a second opinion, we would go to Vanderbilt. My family and I have decided to seek a second opinion first and then start treatment.
As it turns out, we were able to pull some strings at Vanderbilt and get an appointment at 1pm tomorrow for a second opinion.
If I were to go to Vanderbilt and they said to continue with the plasma exchange treatment, I would come back to Birmingham and stay inpatient at UAB for 10 days while receiving the treatment. If they recommended a different treatment, I am not sure what that would mean or how long I would be out.
Thank you all so much for all of the support you have given me thus far. I couldn’t imagine where I would be without you guys. Your support means more to me than you know.

Nine Years

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Today marks nine years since my surgery. Some days it feels like it’s been forever, others it feels like it was just yesterday. I’m starting to forget what it was like being able-bodied, memories of my body now are replacing my body before. I’ve had nine years of leg braces, being left and one handed, and countless doctor’s appointments.

Nine years ago today, I was in surgery for over nine hours. Nine years ago today, we were praying for a miracle in the form of the word “benign.” Nine years ago today, my life changed forever.

I used to pray that God would heal me overnight and then get frustrated when it never happened. It never dawned on me, until recently, that I am healed. Yes, my body is not was it was, but I’m no longer fighting for my life like I was when I had my tumor. If I could go back and change what happened to me, I honestly wouldn’t. These past nine years have had some of the hardest moments of my life but also some of the most rewarding. I’ve learned so much about life in these past nine years that I would’ve missed out on had I not gotten sick. I’ve met so many incredible, strong people that I never would have crossed paths with had I not have gotten sick. In many ways, getting sick saved me.

I’ve become so grateful for the small things, like going on walks, swimming, and even just waking up every morning and going to work. There have been moments throughout this journey where the little joys in my life have been threatened. I’ve relapsed and had to work really hard to get back to where I was, let alone improve my condition. I’ll be honest, does it stink to go shoe shopping with friends and family and just sit back and watch them? Of course it does. It’s heartbreaking. However, in those moments I remind myself that even though I may not being wearing the shoes I would choose, at least I can walk on my own. Plus, no money spent on shoes means more for make-up and purses. Life is all about give and take, right?

Nine years later. I feel stronger, happier, and most importantly I feel blessed.

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What If I’m Not Grateful

Have you ever been in a situation that you couldn’t change no matter how hard you tried and it really frustrated you? That’s where I am at right now.

As most of you know, I started chemotherapy last October to fight my autoimmune disease. Long story short, it wrecked my body in the hopes that it would put me back into remission. When I first started chemo, I didn’t know what I was getting myself into. Looking back, I wouldn’t have changed treatments, but I definitely would have tried harder to take care of myself. However, hindsight is always 20/20 isn’t it?

Anyways, I have officially been off chemo for nearly over two months now, and I find myself frustrated. I am frustrated that I can’t gain any weight back and am way too thin. I am frustrated that everything I eat tastes like tar. I am frustrated that I am continually nauseous. I am frustrated that I have no energy due to the fact that I can’t eat. I am frustrated that none of my clothes fit. Do you see a pattern here? I am frustrated.

The problem though is that in today’s society, I feel like I can’t be frustrated. I feel like I should somehow be grateful for the body I have because that seems to be what “everyone” is striving for. But what if I’m not grateful?

I just want the old me back. I want to be able to walk into a pizza shop and enjoy more than one slice. I want to be able to go the grocery store with my mom and not feel like I am going to pass out because of all the walking.

However, when I don’t feel grateful, I feel even worse because I know that my family is doing everything they can to make me feel better. I know that this is all in God’s plan and He knows exactly what is going on. I know I should be grateful that I do not have a more serious life-threatening disease, like cancer. However, there are some days when it feels like the valley you are in will never end and you just feel sad. Today is one of those days.

I’m grateful though that today the sun will still set and tomorrow it will still rise, bringing us a new day. A fresh start. A new beginning.

Choosing Your Options

Chemotherapy is a hell of a drug. A month ago, I started my three-month journey with it. It’s been really hard. I’ve thrown up, been too weak to walk, and started to lose some of my hair. When I tell people that I am on it or they notice I am wearing a mask to prevent infections, they automatically assume I have cancer. They feel bad for me. When I tell them I don’t have cancer, they look very confused. When I explain my disease, they are even more confused. I have never once in my life come across someone who knows what my disease is, unless they are a doctor. Even then, some doctors are confused. They tell me there’s no way that I can have that disease. It’s for older people, they say. You’re too young, they say. Your nerves aren’t presenting the typical way, they say. One honest doctor even told me that he had no idea what I was talking about and asked me to educate him on my disease.

When I tell people that I chose this treatment, they seem offended. They ask me why in the world would I chose it. Surely your disease isn’t that serious, they say. You can’t be so rare that you need chemotherapy, they say. What they do not realize, is that they are totally and completely wrong.

Every day I turn on the television and I see at least one commercial about treating cancer, if not more. Some of my friends, my parents friends, and even my family have fought cancer. It is a horrible disease that needs a cure. At the nonprofit I am interning at, a handful of our kids have cancer. I missed having cancer by the grace of God when I was 14.

What I don’t see when I turn on the television is commercials talking about fighting Chronic Inflammatory Demyelinating Polyneuropathy. I don’t see commercials talking about how hard it is to have this disease. I don’t see anyone talking about the horrible treatments we have to endure to stay alive.

It frustrates me. It makes me feel alone in this hard fight.

When you have GBS/CIDP, you go through three main lines of defense for treatments. There are others, but these are the main three, or so my doctor says. The first round is a treatment called IVIG. What that means is that every 2-4 weeks, you go to a treatment center and get hooked up to an IV for days to get pumped full of immunoglobulin so that you can keep on being a “normal” person. If you are unlucky enough to be unresponsive to that treatment, you advance to the second round of treatment. This is when you have a port installed and you go to a treatment center and get hooked up to a machine much like dialysis. Only instead of dialysis, you have your blood taken out of you via the port to be cleaned while simultaneously you are pumped full of human plasma so that you don’t die out due to lack of blood. If you are still unlucky, one of the rare cases, and do not respond to this treatment, like I don’t, you are then presented with options. Option one for the third line of defense is to get a combination of long-term steroids paired with short-term low-dose chemotherapy. Option two is to get short-term high-dose chemotherapy along with a toxic immunosuppressant. You are then allowed to pick your poison, literally.

I chose option one the first time I had a heavy relapse. I was kept in remission for four years. When I relapsed again a year ago, my doctor chose the same treatment because it had worked before. Only this time, it didn’t. So we then began down the road of option two and here I am today.

I am not ashamed that I am one of the rare cases of my disease. I hold that title proudly. I wouldn’t change my life even if I could. However, you can see why I am frustrated. I am frustrated because there is no awareness for my disease. I am frustrated because the only way I can find support in others who have gone through what I have is via Facebook. I thank God I have them but it shouldn’t be like this.

I am frustrated because there is no cure. There are only drugs that will get me stable until I have another relapse. However, I keep fighting because I know that one day there will be a cure. I keep fighting so that someday, hopefully, others won’t have to endure what my support group and I have.

Changing For the Better

Change (verb): to make the form, nature, content, future course, etc., of (something) different from what it is or from what it would be if left alone

Change. I hate it. I don’t do well with it. I need time adjusting to it. However, I cannot escape it. I deal with change every single day of my life. Whether it be right as I wake up and I remember that I’m disabled or when plans get cancelled at the last second. Every day I deal with some aspect of change. It helps me grow.

I recently had a huge bout of change in my life a few weeks ago. I moved for the second time since September 7th. My house in Homewood wasn’t working out and I wasn’t happy. I either had to be miserable until December in my situation or deal with the one thing I don’t like (change) to be happier. My parents and I found an apartment near my work that was perfect for me, so we signed the lease. And I moved. And my life changed for the better. Moving into my new place was very hard for me. My mom (very graciously) packed and moved me to my new place while I was at work so I didn’t have to take a day. When I came over on my lunch break, I wanted to cry because I didn’t know where anything was and I was feeling very overwhelmed. My house was changing and I didn’t have the ability to be a part of the process, which was hard for me. I had to let go of control of the situation. In the end though, my mom did a fabulous job and I love where I live. She was patient with me when I got home and showed me where she put everything and answered all my tedious questions until late into the night. Now I never want to leave my little piece of heaven because I’m so comfortable here.

I didn’t go home for the weekend for the first time in a long time about two weeks ago. Auburn had an away game and one of my best friends from home came up to stay with me. I changed my very comfortable routine. It was different. But I had a lot of fun. I went out and danced and was carefree and enjoyed myself with friends. As the night went on, I realized that I wasn’t fighting the change, I was welcoming it.


You see, in my life (in the past), change hasn’t always been good. When I had a change in my headaches the summer of 2007, my life was instantly turned upside down. When I had a change in the way I could type on the computer last fall, I knew instantly that I was in a relapse with my autoimmune disease. For the better half of the past eight years, I have fought change tooth and nail. However, in this new season of my life, I am trying to learn to accept change–whatever form it may come in.

I’ve been noticing these past few weeks that the leaves are changing. With that change, they bring a new season of colors to the world. In the spirit of fall and change, I leave you with this: “The trees are about to show us how lovely it is to let the dead things go.”

Putting the “Home” in HOMEWOOD

This summer has been…a multitude of things. Exciting, stressful, joyful, tiring, sad…just to name a few.

As you all know, I had weird stomach issues for the better half of the summer. I was unable to eat basically anything that was delicious and that made me sad. I also was extremely emotionally drained nearly all the time because of this biology class I was taking. I know that sounds funny, so let me explain. I am one of those people that needs to have a good relationship with the teacher to have a good environment in the class. Well, me and this professor…we just did not get along, to say the least. So, I think that a lot of my stomach issues had to deal with the stress of that class (which I happened to get a B in!!!) because once I had finished it, they resolved.

After class finished up, I moved home for two weeks and had a mini-vacation with my parents and my aunt and uncle. We went to Biloxi and had a great time! I found out that with a little help from my dad, I can be a pretty good blackjack player. I also learned that I have a huge love of breakfast! There was a cute little café in our hotel and I nearly ordered everything off the menu! 11905758_10206630580315688_7221588931980395341_n

After we got back from our vacation, it was crunch time. I now had to pack all my stuff up to prepare to move back to Birmingham! I found the cutest little carriage house in Homewood. All thanks to my boss actually! It’s as tiny as it can be but it is home! I love it. Yesterday, Mom, Dad, Austin and Lauren, and Grandma Betty helped me move in. Well, Grandma Betty and I sat on the sofa (once it was built) and provided help placing things and then helped put smaller things away…we don’t really do well lifting heavy stuff! Ha ha.

11903794_10206630582235736_1133898847538998093_nLast night after everyone had left, a sweet friend invited me to dinner+drinks with her family as her “going away” party and my “welcome to the city” party. I felt so welcomed! I had so much fun with her and her family. It was a great first night in town! Then today, I tackled Target and got way too many groceries. I had to play “refrigerator Tetris” if you will so that I had enough room to fit all the food inside. But thankfully it all fit!

This summer did not end without a little heartache though. My beloved pet fish Frank, passed away Friday night. I had had him since February, when I lived in Auburn, and he was a great companion for me. When I moved home for the summer, my parents fell in love with him too. A lot of people laugh at me for how close I was to Frank and for talking to him like he could talk back, but for me, he wasn’t just my pet fish. He became my friend. I will miss him dearly but hopefully one day I can get a new fish that I will grow to love as much as I did Frank. So I dedicate this post in his memory. 960291_10205494297669332_6236769046046565285_n

Tomorrow, I will start back at my internship full time. I am so excited to get working again! I have missed my coworkers so much in these past two weeks. I am also excited to begin my final semester in college. Upon the completion of this internship, I will graduate in December! Wahoo!

As you all can see, there are a lot of exciting and new things going on in my life. Please keep me in your prayers as I embark on this journey!