Post Treatment #2

I'd first like to say, "Thank you" to my global readers!" In answer to a question from Australia, here is the info on my dose.

My Chemo for this CNS-LCH is called Cytarabine. It has been an approved Chemo for treating blood diseases for decades and is most commonly used to treat Leukemia. I get my treatments 5 days in a row, one week on and 3 weeks off. My first round was at 125mg/m2 and for round 2, they increased my dose to 150mg/m2. These are done as an out patient over an hour or so. Those of you who don't know me, I am small, 5'1" and I don't weigh too much. The doctors wanted to start out safe and make sure I could handle the drug. Apparently, some adults have had a tougher time with this drug than do children. I did well enough for the dose to be increased for round 2 but am waiting to hear if it will go up again. My blood work was still fine at the beginning of round 2 but they will check it again before round three. I also have a follow up appointment with my MD Anderson doctor Tuesday, September 14th. Dr. McClain would like to increase it to 170mg/m2. I am hoping the 2 of them will be able to talk and agree to increase it before my next round. I want to knock this thing out but it will also depend on my blood work.

Three days after Chemo round 2, I started to feel better. I'm not so sure my stomach issues over the weekend could have been prevented if I had done things differently to combat it. I have spoken briefly with a dietitian at MD Anderson over the phone and have an appointment with them on September 14th also. She said I should have had anti-nausea medicine to take at home (my friend that went with me on that Friday said the same thing - I should have asked for something then) and we can talk about certain foods that will be easier to digest. My cravings and taste in my mouth are still normal so, I ate anything I wanted to but not to sure I chose wisely. I may need to stick to soup, rice, applesauce, etc.

Anyway, I went to work and did just fine. I really didn't get tired until after dinner. Oh, did I mention that I actually made dinner this week? I think I officially lost my appetite Monday and Tuesday. I was just not hungry and my stomach was still a little sensitive but I was fine by Wednesday. I still have my hair and I still have my symptoms from the lesions. If the Cytarabine is working, my numbness and coordination issues should go away after the 3rd treatment. Keeping my fingers crossed.

Enough tech talk... now for a couple of humorous moments this week. My students at the high school who do our LIVE TV announcements are doing a great job. We have had a lot of fun! Especially, when we start counting down from 10 to go live. I like to go in the control room and get them excited. I say things like, "Here we go! Its so exciting, we're live in 3 - 2 - 1!" I get a little cheesy with the excitement but they all smile. I am also really trying to keep the positive visuals in my head, I believe this is important for my healing success. So, to help this, I have been listening to a meditation thing on my iPod at night as I go to sleep. The problem is, there is a part where he counts down from 10 in order to 'go deeper' into a relaxing state. But, I start getting wound up and think about going LIVE instead! I've ruined it for myself! Ahh!


Friday night we went out to dinner with the kids. While we were there, I got a picture text of a package that looked like Blow Pops but it said Booty Pop. David looked it up on his phone and saw this was a real product. Its like the 'falsies" Shirley from the 70's TV Show Lavern and Shirley used to have. Anyway, he found there was a commercial on Youtube for it so, he asked the boys to look it up on their phones. (Their phones are actually better than his and they can play videos while his can't.) Anyway, we watched this and laughed - while in the restaurant - at the table. We are so classy!

By the end of dinner, David had started singing a camp song (Bo-Ga-Lu) - "I said, let me see your Booty Pop! What did you say? I said, Let me see your Booty pop..." Our camp friends can relate to this. We were dancing our own version of the Booty Pop commercial/Bo-Ga-Lu in the parking lot on our way to the car. I'd post a picture or a video clip if my kids would let me but they won't!

To my friend who sent me the Booty Pop picture, are you trying to tell me something? :)

Cycle 2 - Full Report

I think I have just experienced one of the toughest weeks of my life. Notice I said, "One of". I know I have had tough times before and I know there will be more ahead but it is funny how you don't always know it when you are actually going through it. With it being the first week of school, it was busy for all of us, we were all tired but I had a little more than most going on. I was so tired Monday, day 1, that I plugged in my laptop at MD Anderson and didn't do anything with it. David came to sit with me and I actually asked him to make some slides for our school announcements. The truth is, he offered, and I accepted. As we were leaving, he asked if I was sure I was OK to drive home because I looked, "druggy". That's David, always charming me with the gushing compliments. My eyes were a bit red and tired looking but I was fine. As it turns out, I forgot I had prescription eye drops I am supposed to take during my treatments...oops, that makes a big difference. Oh, one other thing about Monday. This was the first day we were going to use my port. I was very nervous but it wasn't so bad after all. It is still tender and healing but it isn't near as sore as it was the first week I got it. They told me I could chose to leave the IV in all week or we could just stick me every day. My response was, "All this stuff stays in? How weird! - uhh stick me everyday? Alright, let's try leaving this garden hose in." I managed to leave it in all week. Getting dressed was a challenge. Hiding it was a bigger challenge. I kept thinking it would fall out while I was teaching. I liked Connie's suggestion to let it hang out and clip my OCPS ID BADGE on it. Ha! What would my students think?

Tuesday, my friend Michelle Berggren came out to see me. She brought me a White Chocolate Mocha! Yummy! We laughed it up so much the nurse had to close our door. hee hee hee When the nice lady I was sharing the room with left, she handed me the remote to the TV. As I was trying to turn it off, I was telling Michelle how the nurse gave me my nausea medicine too fast and I was dizzy and all blurry eyed from it. The TV wasn't responding and I kept pressing the button. Suddenly 2 nurses came running in the room - hearing me talk about being dizzy and blurry eyed, they were very concerned and exclaimed, "Are you OK?" I quickly figured out that this big red button I was pushing on the remote wasn't the TV Power button! Ha!
Apparently, it says NURSE in real big letters, but I couldn't read it - I was blurry eyed! We laughed so hard it hurt. If I ever came close to throwing up during a treatment, this had to be it. We apologised to the nurses but they seem to enjoy good humor, even though it was noisy. This is a great place!! Thank you for making me laugh Michelle!

Wednesday, was my first day going through a treatment by myself and it was just fine. I was beat and actually wanted to be alone! I kicked back the chair, got a pillow and a blanket and rested. This was truly a down day for me. I was frustrated with some things at school and worried I wasn't going to be able to do this all year, I was tired and I didn't feel so good. When I got home, I realized I was getting a little temperature. This is earlier than last week. Don't worry, it didn't get higher than 99.5. I curled up with a prayer shawl and slept 12 hours. Thankfully, I felt better in the morning and had a better perspective on life..."I can do this." Thursday, my Mom came out to sit with me. Thank you Mom! Glad you and Jack are doing better. Then Friday, I planned to leave my car at home. I hitched a ride with a neighbor to school, (thank you Diane and Anna) rode with our drama teacher from the Freshman campus to the Main campus and was picked up from school by my friend Michelle Smith.

Thanks for the yummy smoothie! I am really getting spoiled. Its a good thing Michelle drove, I ended up needing more nausea medicine and wouldn't be able to drive myself home. I really was druggy this time. Anyway, here we are at the end of my 2nd round, 5th day...that's what the fingers stand for in case you were wondering. I did it!

So, I was able to drive myself to my treatments and home Monday through Thursday but don't really remember much after I got home. I was told to get used to that. I'd fall asleep on the couch, some how managed to eat and then fell asleep again but woke up refreshed. Some nights at Connie and Jimmie's and some nights at our house. Which brings me to this - thank you all for the food! I was not able to do a thing when I got home and yet the family still got fed!!! What terrific food, too! We loved everything. It was really great to hear the kids get excited about everything we received! They really did go on and on about the fantastic food. I wonder if I should be taking a hint? I have also gotten some better ideas on how to reach out and help others. When I beat this thing, I look forward to passing on the greatness you all have blessed me with. From the bright and colorful socks, goodie bags, visits and more, I am overwhelmed with the out pouring of love and support.

The weekend was tough. I think it takes me a few days to start feeling better. I had horrible stomach pain and couldn't do anything all weekend. That's not true, I went to church because I wanted to but really shouldn't have. (great sermon Dr. Lindamood) I had such bad pains that I had to curl up in a chair outside the sanctuary to get through it. Next time, I think I will stay home. I couldn't make it to work Monday either. So, as the kids got up for school and I laid down on the couch, they heated up a breakfast casserole from my cousins Debbie, Lori and their mom Carol. Of course, the kids loved this, too. They also brought us a dinner casserole that helped me feed the family tonight. I finally think I know what people mean when they talk about how strong I am. Looking back on the week, I was amazing. I got up at 5 AM, worked all day, did Chemo all afternoon, and still fed my family every night as if it was nothing! Kidding of course, I couldn't do it without you all! I am getting ready for bed now and think I can make it back to work tomorrow.

Again, THANK YOU!!!!

Cycle 2 Summary

Sorry, for the lack of updates, it has been a full week. The kids and I all started back to school. I was up at 5 AM, left school at 2:30 PM and went directly to MD Anderson Monday through Friday. I'd get home around 6 PM, barely let myself eat before going to sleep for the night. I have a couple of cute stories and things I want to write about, but I'm still recovering this weekend. I'm just tired and feel a little icky in the tummy. I am so grateful for my visitors this week; David, Michelle Bergeran, Mom, Michelle Smith, Debbie McMillin and Carol Voss.

Overall, I am happy to report that I am surviving just fine - considering all I am going through. I couldn't have made it without the meals every night! I never knew how much I would appreciate this kind of help! Thank you Connie, Aunt Kay, Aunt Anita, Lisa Rotenberger, Diane Williams, Debbie, Lori and Carol Voss. Every meal was fabulous and the kids raved! In fact, you all were such good cooks, they've decided they don't like my cooking anymore. (just kidding - don't let this stop you)

More stories about round 2, later.
Thanks for the love and support.
Misty

Port Placement - 1 week later

First of all, I am sorry for this long lapse without a report. I was in awful pain for 3 days after my Port Placement. Couldn't do anything!!! I had to sleep sitting up on the couch because it hurt so bad in all positions. This last week has also been a long road of healing on top of pre-planning for school. I did OK each day until about 3 or 4 PM and then I crashed on the couch for a couple of hours. I was so beat by Tuesday night, I was worried about the whole year ahead. I started taking more vitamins and actually felt better on Friday.

David and the kids helped me set up some things in my studio on the main campus. We worked so hard on both campuses that we left the house a wreck. What a way to start back to school. The yard hasn't been mowed in 2 weeks, we are behind on our laundry, dishes and house cleaning. Oh, yea! This is the way to start my second round of chemo, too! "Stop the tram! I'm parked in Sleepy?" OK, I don't think that came off as funny in writing as it did in my head. For those of you who didn't get it, I was making fun of "Stop the World, I Want to Get Off" - Orlando (Disney) style. Still not funny, I know. AHHH, look at the time! I have to wake up at 5 AM, what am I doing up?

Here we go! This week will be the real test if I can do this or not. Don't expect daily posts. After last week, I am planning to sleep during my treatment on Monday. Then Tuesday, I have a friend Michelle B. coming to sit with me so we can laugh it up in the Chemo Lounge! I'll probably sleep again on Wednesday - who knows.

G' Nite!

Port Placement Today

First of all, let me say I had a fun time at Brio with some friends the night before. This made a huge difference in my mental state going into this. The pep talks were just what I needed. Of course lots of food, desert and wacky conversation was icing on the cake. I didn't mind not getting much sleep since they were going to put me out today anyway...it was David who had to suffer a little. I drank a few diet cokes and had trouble sleeping. Go figure. Robin joked that I am killing myself but now I have a new theory, if coke can get rid of corrosion on a car battery maybe it can clean up my brain. David said, "If this was true we would have saved a lot of money by now."


We had to arrive at 7:30 AM and they told me to dress comfortably with a button down shirt. David said I was one step above PJ's. Darn, I wish I would have thought about that earlier, I would have worn my PJ's. The cute socks were a gift from Joy and Marv Johnson. They gave me 5 different pair to wear during treatments so I can be reminded how much support and love I have around me. The nurses loved my socks! (and so do I) Thanks Joy! I went in at 9 AM and was done by 10. They put me in a "twilight sleep". I was really loopy, but awake for the whole thing - I think. Apparently, I talked to them through the whole procedure. They said I was very entertaining. I was also given something to forget everything that happened... how strange is that? Uh Oh, did I tell them I was in the witness protection program? If I suddenly disappear, you'll know I have been re-located. And Robin, sorry I could have told them everything, but I don't remember. Whoops, that goes for everyone else I talked to last night, too. I only remember telling them about being awake when my skull tumor was removed in 1989. Today, I didn't feel any pain, just pressure - which they said is good because what they did to me was violent. Yes, they actually said "violent". They used a glue instead of stitches which may explain why they gave me the amnesia stuff - I think they had a horrible spill when they were closing me up. There was all this noise, screaming and they had paper stuck to their heads. I don't understand why they had to cut my hair either. And my socks are missing. Weird. Anyway, I took a couple of hours to eat and recover enough to go home but was ready by 1 PM. My Aunt Kay brought me home and David went to work.

At home, I just wanted to sleep, so Aunt Kay helped get me set up before going home. I slept for a couple of hours. Don't worry, I wasn't really alone. Our neighbors cat came in and slept on the foot stool with me. Yes, this is our neighbor's cat. He has recently adopted us. I wonder if they've noticed he moved out. My mother-in-law is only 2 blocks away and a friend from my hometown just bought the house next door, so she is over there cleaning up with her family. Everyone knew I was home but I wanted to be alone. When I woke up, I was in a lot of pain. I managed to get some Tylenol and sit back down just before my kids and their cousins sneaked in playing "Don't Wake Mommy". (you know, like the board game "Don't Wake Daddy") I was already awake, so I spoiled the game - sorry kids, I'm not really myself today. Tabby wanted to show them her hamster and guitar. Ana-Elisa is off to college in a couple of weeks and Phillip has been singing in the subway station in DC for money. Don't worry, Miriam hasn't kicked him out of the house. He was actually hired by the DC Metro for this at least that is his story, I'm not really sure at this point. But, look at them. Aren't they cute? I am so glad they came down just to see me this weekend. OK, they really came to see Grandpa - he is recovering from his open heart surgery very well, by-the-e-way. Justin wanted to see my port. Which is officially called a "Power Port" - I think this means I can leap to alternate universes... If I suddenly disappear, you'll have to wonder where I really went. But don't worry, I'll come back after I save someones life. Isn't that how it is supposed to work? I've seen Sliders and Quantum Leap. OK, it is becoming apparent that the drugs haven't completely worn off yet.
This is what the port looks like, it is the size a of a quarter around and a half inch thick but that is OK, because I love the color! Purple is my favorite.


I had Justin snap this picture of me in pain. "IT HURTS!!!!"
The good news is, I'm getting hungry and David just came home. I think I'll be fine because I actually want to get in the car and go get dinner at Grandma's. This has to be a good sign.

Post Treatment #1 - Much Better

This picture was taken today at church! Last weekend, I rested all weekend and didn't make it to church. My stomach was bothering me and I was tired but that was it. I felt better by Monday afternoon and great by Tuesday. I was actually able to work on my new classroom at our Freshman campus and I felt terrific. So, at this point I would say it has been a really good week and I don't even feel like I am on Chemo. I still have my appetite, energy and a normal taste in my mouth. I am sure that will change as they increase my dose but I am happy with how I am doing right now!

I am trying to upload a video for the first time. If it works, take a look at my new classroom on our Freshman Campus! It is bare but I want to show it off before it gets equipment in it. Here are some stills if the video doesn't play.

This Thursday, anyone who can make it out to see me, is invited to Brio in the Winter Park Village from 6 PM to ? The next day, I get my port placement - Yippee! I have until midnight to eat and drink. So, I have to hydrate myself well. (no, I don't mean alcohol - you sillies) Hope to see you there!

I officially start back to work Monday, August 23rd for pre-plan. Yes, Florida has gone from starting back to school in the middle of July to late August. Crazy I know! That week will be very busy because we also have open house at all of our schools! So, I really want to get as much as I can done now. I will also have a lot of equipment to get set up - if it arrives. Then I have my 2nd round of Chemo the first week of school. I will leave school when the students do, go straight to MD Anderson and home. You can see why I want to get a lot of work done now.

Boy, this year is going to be "some kind of fun". Don't worry, I am starting to think my toughest years are my best years. 1992 for example: The year my Dad died and my house was totaled by Hurricane Andrew... I started dating David (my husband - who lost his Grandmother and childhood pet, Princess). But, I also worked on my first TV show at Nickelodeon (GUTS) and then followed that with Clarissa Explains It All - which was awesome! Still, David and I like to say, the year we started dating was the worst year of our lives.