today was the worst morning & afternoon in a long time

I'll explain why when I want to.

What The Heckie?! BLECK!!!

UC Medical Arts Building has 8 floors with Parking 1 (where we always park) & Parking 2. I was always at floor 3—the Neuroscience floor. The Barret Center for Cancer is floor 2 (also the Orthopedic & Sports Medicine floor) I cringe every time I pass it because if I started my unknown medical journey at this location instead of at Beacon Orthopaedics (they use an ‘A’ in it..oh how fancy..NO..you don't spell Pedialyte "Paedialyte") they clearly would have seen I had neurological problem RIGHT AWAY here and set me up an appointment on the neurology floor.[F++++++++ TO HENRY STEINE AT BEACON!!! YOU ARROGANT MILITARY SARGEANT; YOU AREN’T!!! YOU LACK COMPASSION AND CONSIDERATION AND THE ABILITY TO LISTEN AND OBSERVE!!!] but to get to the Barret Center, you have to take a hallway and go through a window tunnel skywalk (“It’s called a bridge between to buildings” -Dad :’D) and then you’re in the Barret Center! Floor 6 is the genetic testing floor. Floor 1 is the Kroger pharmacy and a mini Kroger store in it. It was so cool :) Floor 4 is the IV infusion therapy floor linked to the Barret Center. Not sure what the other floors specialize in.

When we got to Floor 4 yesterday and were directed to the IV therapy door, were waiting for a bit so I started feeding my hot cocoa to all the bunnies sitting around as decorations. Bunnies love hot cocoa. I should know, because I am one. Chocolate bunnies are a no-no. I'd never eat one.. that's like cannibalism!  

I used to like that quote: 

"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain" 

UNTIL I COULDN'T DANCE ANYMORE BECAUSE OF SPS!

So now I've been waiting on both-

For some of the storm to pass & to be able to dance some again.

Finally, a nurse named Kathy came out to the lobby and what do you know? My schedule was changed. She said Dr. Lafif had consulted with Dr. Andrew McKeon, a neurologist with a speciality in auto-immune movement disorders, at Mayo Clinic ("With an alphabet behind his name" -Mama :D) ..he is a M.D., M.B., & a B.Ch. He thought that I just try three sessions of steroids this week (3/20 - 3/22) then once every week for four more weeks (last dose of steroids will be on April 18, a day before my 21st birthday) & a meeting with Dr. Latif on April 15th and if the steroids don't give me the relief, THAT is when chemo would be started in conjunction with more steroids.

From registering at the Barret Center, then going down to the first floor to check out the Kroger, then going back up the Barret Center to use the indoor many hallways (I would REFUSE to go to the hospital cafe via going outside. Way too cold and I am just skin and bones) that connect to University Hospital, when eventually you ride an elevator up two floors to the hospital. We went into the main cafe and there were doctors everywhere, seating everywhere, so many food selections and restaurant fronts built in. Mama wanted to get a latte from Starbucks & she got me a milk choco hot chocolate like she had gotten me while I admitted into the hospital last summer. Then, we had to go back down the elevators, through the long hallways again and there were many doorway metal floor seams (I had my right stiff leg & ankle propped up in the air, resting on my left bent knee) and every time he would roll me over those when we were first going to the cafe, I would get sooooo much pain that would radiate through my knee. I would say "Ow!" every time and my dad wasn't picking up on my response to each bump, so I had to tell him to go very slow over each slight metal bump. Then, things were good with the seams, but I was still EXTREMELY uncomfortable at this point from being wheeled everywhere on multiple levels and traveling multiple long hallways all like a maze with signs directing you to your destinations; just having my stiff limb hanging from me sitting in my wheelchair. I REALLY need to get a new wheelchair. My wheelchair now is collapsable and UC colors and has awesome pockets in the back, but I need a wheelchair where I can prop my leg up on a platform with edges straight in front of my right leg, so it's not hanging and giving me extreme pain and discomfort. I feel that'd be better. Not the best. Being able to bend my leg and have my ankle not twisted would be grand, but it would be better with this type of wheelchair I have in mind.

Someone, halp! Please!

So, I got set with my infusion in my arm. Saline first & eventually switching to the steroids. It took my social worker named Clair that visited me, when she saw I was coming yesterday and my mom to get my knee bent slightly. 

Better, but sucky. Trying to mock what position I get placed comfy up in my bedroom, but it was not working right because my body is all way straight on my side and I am completely laying flat in my bed. My ankle pain was excruciating. It was a 16 for awhile on the pain scale, but I have the HIGHEST pain tolerance from all of this. 

They have snacks available, so I asked mama if she could go get me some chips from the basket on the nurses counter. I was watching A Baby Story on the tv's they have connected to each reclinable patient chair and all was mostly good and distracting.

Then TLC changed to the show Extreme Couponing and starting with an expectant mother hoarding up on diapers and Gerber Graduate snacks, and everything else baby and general other stuff. Chick, this thing isn't nearly even out of your body yet and those snacks are going to go stale. I don't know--whatever. When I handed my empty bag of chips to my mom, I was saying, those started to not taste right. I was telling her I had this weird taste in my mouth, so she got me a peppermint from the counter too. It helped a little bit and nurse Kathy took my vitals and asked me to rank my pain from the scale of 0-10. It's always a 10, but since I've been dealing with this for more than a year and I'm used to it, it's about a 7. Finally, found a happy place AT THE END that was comfy in my mama's arms <3

 When I was finished with my treatment (I was sleepy at the end) I was talking to the nurses and every time I'd talk or have my mouth open I had this awful chemical taste in my mouth. It was horrible. I closed my mouth, and could still taste it, but not as bad as opening my mouth. My mom asked nurse Kathy about side effects. We knew the side effects of chemo but not steroids. She said weight gain and increased appetite. Mama asked her about having a weird taste in your mouth and said she's never heard that from anyone. I was mumbling to mama that this was going to be torture for a motor mouth--that I was going to have to be mute. I started signing and my fingers were a little too high up on my chin (touching my bottom lips), so nurse Kathy thought I was blowing her a kiss, haha, but I mumbled it was a 'thank you' and corrected my hand to sign from my chin another 'thank you'.

My dad has been sitting in the IV therapy little lobby with the bunnies, watching some show on his Kindle for 4 hours! The amazing receptionist said he was welcome to go back there as well because there were plenty of patient seats available, and next to each patient chair there were regular chairs for the patients to have a visitor, but he didn't want to intrude. I was mumbling to him, "Dad. Why didn't you? If someone needed a patient seat and though you were too close to them, you could have just gone back or found another chair to sit next to mom." And I'm young too, so it's way understandable. Then I mumbled to mama to tell him about the taste in my mouth and dad said, "It's the chemicals from the steroids! Hopefully it will go away." And it dissipated to tasting very weak on the way home.

I took a nap when I got home. Placed in the PROPER position were trying to mimic in The IV therapy room, but in my bed it never fails. Take a few minutes, but my mama is pro at getting me into a comfy position to nap or go to sleep. :) <3

I woke up a few hours later and had a text from my sissy (who has had a bug from her kids at school since Sunday and it hasn't been nice on her) asking if I was alright & I responded "Soooooo sleeeeepyy, didn't want to wake up, want to go back to sleeep!" I took my 3:00 meds a bit late and just layed in bed. I had this joyous gauze bangage over my tubes connected to the plastic thing in my vein, so it's easier on them the next day, to just connect my IV to the already prepared tube. Nurse Kathy said if it bothered me, we didn't have to do it today. And I didn't. Stupid thing. I don't get how many times I get pricked. I'm so used to so many shots and injections. It's nothing. But this thing was annoying.

Yesterday.

Today, Much better.

The positive side about that  huge bandage and this tape is that IT DOESN'T LEAVE ADHESIVE RESIDUE!!! :D I got that crap on the inside of my elbows every day of the week early this year while I was on IVIg. Nurse Carolyn said it comes right off with rubbing alcohol. Alright! So, I tried it and ended up breaking the surface of my skin, even with the rubbing alcohol each new time I got my new awesome sticky marks! THAT WAS EVEN MORE ANNOYING! I remember going through that same thing after I came home from, once again, being hospitalized last year. Took 4 days for it to come off my arm + I got this lovely moveable knot in my vein from the Ativan injections going into my tube-y thing that went into my veins and up to my brain. Ativan is a drug straight from hell to be on for long use with SPS! Hello, you're NOT welcome, you straight from hell adverse reactions! Also the vein was moveable and the whole combo just creeped me out so much & it took months and months to finally go away. 

A little later, while I was still up in my bed, I heard a knock on the door. Nia went all crazy being a yappie yorkie, like normal, running to the door & my mom and I welcomed Elder Hansen & Elder Hatch into the house. Odd, we hadn't scheduled them to come over and it was late in the day. I heard an "Oh no..." from my dad and got worried that someone died. Then I heard something about being transfered. So I go out of bed and crutched to the stairs and down them slowly to hear what was going on. Elder Hansen was being transfered somewhere else. He didn't know where, but I thanked him graciously for what he has done for my life. He wouldn't be at church anymore, obviously, but Elder Hatch would still be and they would both be matched up with different partners in their missions. Elder Hansen said he would definitely return when I make the chance to get baptized. They were very happy to hear that I wouldn't be starting chemo yet, so I will definitely be in church this Sunday and the next few Sundays at least! I can always wear those masks that hook around your ears at church, if chemo is needed. I gave them some great laughs about mixed kids and an observation I've made. For the most part, if a white chick acts ghetto and gets a ghetto guy, their kids' names will be ghetto-ish. The opposite, like my dad & my mom. If a black guy conforms to the white side and gets with a white chick, their kids' name will be normal. Elder Hansen then said Mormons spell their kids' names very uniquely. I forget what this girl's name that he said he met! It was a VERY simple name normally spelled with about 5-6 letters in it and it began with an 'A' but it had soooo many letters in it. He spelled it out for us and we were all floored. The parents literally took every part of the name an elongated it. All we can each remember is that it included a 'leigh' in it somewhere, which is 5 letters itself. If you look up baby Mormon names, you will see. But this girls name had about 12 letters in it AT LEAST. I wished Elder Hansen a very great "departual" I spewed out a new word. We all laughed and I said "I guess I was going for departure & arrival and combined them together into one." So we said a prayer at the end and Elder Hansen volunteered my dad to start it up. I told my dad to include "departual" in it and he didn't, then said "In Jesus' name we pray, Amen." So I kept my head bowed and said "And we wish Elder Hansen the most wonderful departual, In Jesus' name we pray, Amen" They laughed and continued with "What? God gave me a gift to be funny and he would love that I added that in. I'm not going to put his gifts to waste!" It was sad to see him leave, but I know God will take him to a great place where he will continue his amazing skill to project proudly and clear The Latter Day Saints word as effectively as it reached this former Atheist. They also told us, as of recently (they used to only be able to email their family) but now they can email with other people. So he told me to email him my SPS story and I said "And I can send you a picture of [insert the guy's name I'm talking to] since you won't meet him at church and since you know so much about him through Matthew (an Ambassador of our LDS church)!" While I was talking to them, I noticed the chemical taste was coming back and told my parents when they left.

Also last night, my mom ran across this post from Beth Gottlieb who posted it last night on the SPS support group on Facebook and mama read it to me.

"OK, I Just had my 4th Prednisone IV infusion, 3 in a row last week and now once a week for 6-8 weeks. My left arm was stiff since January. And last night, I was able to put on my earrings myself! I couldn't get that "arm movement" - so the infusions seem to be relieving some of the stiffness and giving me back some mobility (THANK MODERN MEDICINE AND THE ONE MOST HIGH! NOT IN THAT ORDER)... but, now I have this awful "rotten grapefruit" taste in my mouth, can't get rid of it. Anyone have any suggestions? Been drinking stuff, mints, candies... as soon as I'm done drinking the juice or the candy is gone, the horrible taste comes right back. From the Prednisone, right? HELP?!"

Laura Lammers, also a member on the SPS group, agreed "isn't that just the worst taste......I have tried everything I can think of and no luck either" 

Mama posted that I experienced that awful taste on my first high dose IV infusion. I don't know what rotten grapefruit tastes like, but that seems like a good description of it too. Just tastes like chemicals. So now I'm wondering if only people with SPS just get this awful taste, since nurse Kathy had never heard of that happening? Has anyone else experienced this horrible taste after receiving steroids for a certain reason?

But Beth's post gives me high hopes that the steroids may give me  movement in my knee and more mobility back!! Fingers crossed!! I'm just wondering what's going to become of my ankle. This afternoon, when we all got back home, mama put me in my normal bed napping/sleeping position and the muscles in the back of my leg from my ankle up to my calf hurt so bad! Like they were being stretched so much from being shortened for so long! I asked mama if it looked like my heel was closer to the wall and she said it did! I also told her, "My toes are normally the only part of my foot that contacts the wall, but it feels like the ball of my foot is also making contact with the wall." Is my heel on it's way to finally being back on the ground again after a year and 5 months?!

Today's appointment was at 8:00 AM unlike 12:30 PM like it was yesterday. We had to leave early cus we would be in rush hour traffic. When I get up every morning to get out of my bed after taking my meds, my knee has always gone stiff and it hurts sooooooo crazyyyy badddd after being bent long in my sleep, then suddenly getting all crazy locked up and continues being locked for the rest of the day. But the initial quick bent to locked up stiffness transition feeling every morning, oh buddy. NOT FUN. But that didn't happen this morning! :) And when I swung my legs over the side of my bed, my right leg stayed semi bent. I got up to see if I could get some steps in, which I couldn't, but I LOVED not feeling that awful feeling this morning!

Today's appointment was more comfortable. :) Of course we just went up the the 4th floor, on arrival, right away and once the IV therapy room was unlocked, I was one of the first two patients invited in first. We turned the chair around so I could put my feet against the wall, while sitting normal in my seat for a change. The chemical taste, I got again, but it wasn't that bad today.

   

Me all hooked up to my saline then steroids in my penguin hat today that I got last year in the winter. First time wearing it today :) Pengueen!

Tomorrow, my appointment will also be at 8:00 AM and I hope to get the same out of bed experience and be comfy again!

We are all staying prayed up & I deeply appreciate the prayers coming my way. Thank you all! :) You guys are wonderful! <3

(I apologize for any typos, I don't proof read these blog posts. Just spilling out information most of you would like to know. I'll eventually go back, probably tomorrow, and make any corrections with typos from my last two posts. They've just been so long!) 

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