Steroids & Chemotherapy

First off, Dr. Dalmau in Barcelona tested for antibodies to cell surface neuronal antigens including NMDA, AMPA, GABA(B), mGluR1 & mGluR5 receptors and they all came back negative. The antibodies to LGI1 & Caspr2 (previously attributed to VGKC) were also determined and came back negative. They did not examine the samples for antibodies to intracellular neuronal antigens that were commercially available. My neurologist, Dr. Espay responded to Dr. Dalmau's email saying "Thank you so much for the update. I though she was being checked for GlyR antibodies. She (if we are talking about Kayla Pounds) is the patient with a stiff person syndrome phenotype. Can you find out if this was part of the studies? Thanks, Alberto" So my GlyR antibodies were tested an also came back negative, which is just great.

So, since nothing specific was determined to be abnormal, I can't get treatment created/best suited for whatever is making me all chronically stiff and would help me the most if a certain bad antibody was narrowed down to a tee. After the disappointing emails, Dr. Espay transfered me over to the Barret Center, so a doctor could talk to us about two different treatments that kill bad cells. Rituxan/Rituximab & Cytoxan/Cyclophosphamide. From messages I had gotten from many amazing people, also with SPS, who had seen my news story that was aired nationwide and was posted on the SPS support group on Facebook, that I am a part of now. People from different countries and different places around the US, a lot of them are about to try Rituxan, which I was also scheduled to do at this point as well as discussed at my first consultation at the Barret Center. My amazing doctor, Dr. Latif and just as kind, helpful & grounded as Dr. Espay, had never seen anybody with my kind of condition before (SPS) [I really don't know if Dr. Espay has ever had a patient with SPS either], so he had to do his research and he wrote up a detailed letter to our insurance company saying that this treatment would benefit me the most. So kind of him. Many people with auto-immune conditions respond very well to this treatment. My friend Shelby's mom has a rare auto-immune skin condition and has/had the Rituxan treatment and it has really helped her.

As some of you know, I got a call one morning from the Barrett Center saying our insurance denied covering Rituxan, even with the letter from Dr. Latif. It's a really expensive treatment. We would have fought it, but I didn't want to prolong getting relief. I just wanted to get something else started. So they asked us to come in that day to have another consultation with Dr. Latif.

We went down to Cincinnati later that day, parked in the normal Medical Arts parking garage that we're all too familiar with, and my mom wheeled me into the little lobby where four elevators are. All going to whatever floor you want. I pushed the up button. This lady and this guy then came in after us, both were separate and not with each other. The elevator we were all faced at opened and my mom turned me around, backing up herself towards the open doors, to wheel me in backwards. The lady and the guy both went in  before us, everybody in the elevator including this stupid lady and this stupid guy, seeing that a girl in a wheelchair was trying to get into the elevator. They let the door close on us! Excuse me? I yelled "RUDE!!!!!!" really loudly, so that they would hear. The lady and the guy clearly saw that we were there first and they went into the elevator first and took up the room my mom and I, in my wheelchair, would have perfectly fit in. My mom and I couldn't believe it. We were appalled. That they wouldn't stand aside and let us go on first and wait for one of the other 3 freaking elevators! When they each came in AFTER US and just went straight into the elevator, leaving a girl with a stiff leg in a wheelchair and her mom behind, ready to get on the elevator.  

When we told this story to my dad later on in the day he was saying really mad, "This sh*t ALWAYS happens when I'm not around. I would have ran up the stairs and given them a piece of my mind." And no doubt he would have. My dad doesn't play nice. But that was so unacceptable and horrible what those people did. (Not that there are any stairs around, and we had no clue what floor they went to go run my wheelchair into the backs on them both really hard. Wheelchair rage. I don't play nice at alllll either with things like that. I would have given them a piece of my mind too after ramming into them with my wheelchair, powered up by my mom running to give me speed.

So, continuing, My mom's back was to the closed elevator doors and my back was to her front, sitting in my wheelchair. We were talking about it and this guy comes into the lobby with little bluetooth clip thing on his ear and his little boy with him and he said "I saw that. That was awful. The nerve of some people." I responded "You did? And we were here first! I swear, there are many wonderful people out there and there are many horrible people out there, and those people are part of that horrible group." Basically my mom, me, even his son and this great gentleman who held the elevator door open so we could go into the elevator first when it opened again, were just talking about how someone, and it was two grown people, could do that. And how nobody else in the elevator prevented that from happening. He asked which floor we were going to and we said "2" and they were going there too! When we exited the elevator, I was hoping they were still very near behind us, traveling through the long hallway and the tunnel from the Medical Arts side to the Barret Center. I was getting worried, because the Barret Center is a cancer center. So I turned around, and they were still right behind us and I asked him, "Do you mind me asking why you're here?" I was hoping he didn't have cancer because he had no hair but he had a smile on his face, his head up and happy and healthy looking, walking with strides of energy. He responded, "I'm here to pick up my brother. He has esophageal cancer" I sincerely apologized but he said he's tough. He's been through it before, but it was lower in his chest and got chemo & radiation for it and got through it. This day, he was getting his throat biopsied. Hopefully it came back negative, but even if he has cancer higher up now, his brother was sure he'd get through it again. He was just so confident that things would be fine with his brother and this amazing guy and his cute little guy were just so friendly! He asked me what I had and I just said "A rare auto-immune disease. Stiff Person Syndrome. It's complicated." We were at the Barret Center now, so he said said "Very nice to meet you ladies" & that they'd keep us in their prayers and we returned the same favor. 

My mom and I went to the desk and my mom signed me in and got our buzzer like you get at restaurants to let you know when your table is ready. The guy came back to me and put a orange post it on my leg and told me it was his number and to reach him anytime and that we'd all have to go out to lunch sometime! Above it was his name was Ali! :) Our buzzer thing went off pretty fast so we waved to them as they were seated and waiting for his brother & the boy's uncle. We went to register desk #6 like last time and I didn't even need to sign the little signature pad. They still had all my info from the previous time I had been there. The nice attendant just asked me to say my birthday to ensure it was me! Yes, I was me! I am me! :D (Wow, this blog post is going to be super long...)   

So, as we were waiting for our buzzer to go off again to enter area 1 where my doctor has his patients, this taller guy was walking to where were would sit and Ali and his son came around too! We got to meet Ali's brother, Levert! He was so happy and so nice and I was so happy to see him! Once again, I gave him sympathy that he had to go through cancer and that I hoped his biopsy would come out clear. He brushed it off like it was no problem at all. He asked me what was going on with me, like Ali did. "It's complicated.." and laughed it away. Iesa (pronounced: E-Sa) was standing in our circle of us all talking, he was so cute and just not saying much at all but he was standing with his feet (in his nice, awesome red velour shoes with white adidas stripes and white at the bottom around the shoes.. something like that) in such a unique way. It was like 5th position in ballet. My mom noticed it, and Ali said he always stands like that and doesn't know why. Ieas corrected his standing positon, maybe a little embarrassed but he was laughing and says he does it out of habit. My mom was saying maybe his feet were like that in the womb and Ali thought that could very well be true. I told Ieas that it looked like a ballet position and Ali told us that he actually does dance! How awesome! The links of all of us being nice and the dancing link! This little guy was so cute. He was in the 4th grade. I think Ali told us that he coaches Ieas' basketball team. They were so cute, standing near each other, with matching colors. Levert said they loved to play basketball and told us that he, himself, was in the NFL! I was blown away :D Ali told us that he did something to his knee in the past, was unable to play for awhile, and now it inhibits his ability to play as well now. I told him sorry, once again, and that I know what it's like to lose your ability to exert your passion.. that I lost the ability to dance.

Well, our buzzer went off but I wanted to take a picture with all of them! My initial nurse came out and I had no storage left on my phone and was so upset. I was going through and deleting pictures but my camera wouldn't open up. I was so frustrated but Iesa said to use his phone to get a picture of us all. I apologized to my nurse for the hold up but she said "It's fine!!" like there was no problem at all. I even invited her into the picture. My mom took a picture of us and I asked for Ieas' phone number to retrieve the picture. We said our goodbyes and I was sad to see them all go. Can't wait for us all to get together for lunch, even with my dad. My phone had died and I was busy all that day, so I texted little 4th grade Ieas with an iPhone (haha) the next morning, saying who I was and asking for the picture. He sent it to me and I texted back "I love it! We all look like family! So, I know, I know. You're dying to see who these wonderful people are. Drum roll please!

Everything happens for a reason. 

The two different jerks that came in after my mom & I were waiting for the elevator and went in when the doors opened, filling the elevator, and leaving my mom & I behind.. 

It allowed us to meet these amazing men.

That nurse on the left was my initial vital signs nurse the first time too and she remembered the first time we were there that I had my leg on my mom's leg (a strategy we use to get my knee to bend.. the bottom of my knee against her leg and she pushes down on my foot to get some bendage). So she moved the patient chair/table/bed thing (you know all draped with the paper to keep things sterile for each patient) closer to me so that I could rest my leg on it. She did that right from the start and told my mom & I that she remembered the last time, so hopefully it would help me the same. And it did. :) Just having my leg laying on something is 10x better than having it stiff, hanging from me sitting in my wheelchair. We thought that was so sweet of her. 

Dr. Latif came in and said he had seen my story on the news. He also said that he had written a letter for my insurance and that he researched into Stiff Person Syndrome to know what it is. Since Rituxan was denied still (as stated above) he told me that I would be getting the Cytoxan treatment then. My mom and I weren't sure if there were other treatments he was going to talk about, so hearing that I'd be getting the chemotherapy treatment was unfortunate, but I really didn't care. I just wanted relief. He said he still had to do research to figure out what dosage I should get to give me the best benefits with the least amount of side affects (nausea/hair loss). I told him that I didn't care about the side effects, that I just wanted what was going to help me get the greatest of results. He told me that there would be no use of giving me mega high doses and getting the full on side effects if it would be no benefit to me. So once again, he had to research more. He is such an amazing doctor and he said he'd hope that I would get started on Cytoxan in a week. And the word is true. I'm starting chemotherapy in two days.

Andrea, my amazing nurse, then came in and replaced Dr. Latif. She's the one who calls to have me come in and such. She is such a sweetie. The first consultation I had here, she came to visit me afterwards and to see if I needed anything. She was writing things down in a little spiral notebook pad. We went over rehab equipment, something that can keep me safe in the car since I always have to lie in the backseat of the car, not seat belted in because I don't know how you can do that? And she went and got a social worker and Andrea took us to a room where there were a few ladies in there talking about different financial options to choose from, to pay for all the treatments and everything I'll be getting. Options like Medicaid and other things. 

Anyway, at our second meeting at the Barret Center, she gave us booklets about what to expect with chemotherapy. She went through them with us and there are tons of precautions and some weird things you can't do while undergoing chemo. The weirdest one was she told us to get plastic utensils because if I use metal ones, my food will taste like metal. I'm just going to wear my glasses to avoid the eye care section. To expect bruises and rashes, but if they're bigger than what you'd expect, we would need to call in to the office. There were a lot of things that we'd have to call in if something happened. If my temperature gets over a certain degree and many other things. The no tampons page. I was "Oh crap. No......." But she told me that most people's cycles stop while going through chemotherapy. My Aunt Debbie's did when she was on chemo for her breast cancer back when I was little. I'm surprised I still have been having my cycle because my leg is always working me out (excessive exercise) & my weight has plummeted to 91-92 pounds (excessive weight loss). But whatever. I've always liked my period. Haha, this is a side effect of my meds--lack of inhibition. Also, another side effect--rambling on. I told my gyno something last year when I went to have an appointment about the lump I felt in my boobie. He did a normal vaginal exam and then felt the lump. He asked if I needed/wanted birth control and I said, "No, not at this point." I guess they ask young girls because they tend to be sexually active and many have heavy flows. I told him, "I actually love my period." He covered his face, laughing, and said, "I can honestly say I've never heard that before." :D What? I'm just happy when I'm on it and it's short and completely manageable. But anyway, I forget more of the things I have to do when I'm undergoing chemo. I have to stay really clean/away from sick people, wear gloves when cleaning up bodily fluids like vomit. And if I have a problem with vomiting, I can get meds for that. I spent the majority of last year always being crazy nauseous and throwing up at times, so I'm pretty used to that. But cool. Anti-nausea meds.

This is Andrea.

It looks like she has three arms, but she has two.  

I gave her a hug token for her sweetness & how she went out of her way to help me.

I give these out to very special people. I don't have many.

FINALLY

the end of my novel blog post.

This is my schedule as of now. Subject to change at any point.

I go to the Barret Center tomorrow at 11:30 to register for an IV therapy account & then at 12:30 I'm getting a high dose of steroids in the Medical Arts building by a neuro doctor, Dr. Currie, that reminds me so much of my friend Shelby (mentioned above). 

Thursday & Friday I will be receiving chemo at 12:30 at the Barrett Center.

March 28th, April 4th, & April 11th I'll be getting more high dose steroids from Dr. Currie.

April 15th, I'll have a visit with Dr. Latif to discuss more chemo/more steroids.. i'm not sure.

Once again. This schedule is subject to change. 

Not sure when I'm getting chemo. All I know is that I AM getting chemo treatment this Thursday & Friday. 

One last thing. My friend, Alicia Lang. She had Cystic Fibrosis and passed away on the 8th of this month from a bacterial infection not long after her double lung transplant while she was still in the hospital trying to get accustomed to her new beautiful lungs. 

Tomorrow would be her 21st birthday.

3.20.13. 

I know she was on steroids for awhile.

Me getting my first high dose of steroids tomorrow before chemotherapy and continual high dose steroids afterwards.

NOT A COINCIDENCE. 

We don't set up the schedules, they call us to tell us when to come in. 

How creepy but amazing.

Alicia is with me.

Happy almost 21st birthday beautiful girl.

You also have a hug token that I put on your casket.

Breathe in peace.

       3.20.92 - 3.8.13