It Just Can't Be Easy, Can It?

Happy New Year Everyone! My vacation was a 'break from all medicine'. That's right, I stopped taking the Gleevec, December 22nd because my skin broke out with tiny little bumps all over. First my face, then my arms, back and legs. I was sent to an Internalist at MD Anderson and he wasn't sure what to think. He had me taking Benadryl at night and Claritin in the morning but, that didn't change anything so, I was instructed to stop taking the Gleevec pill. As soon as I stopped taking Gleevec, my bumps started to disappear but they were replaced with an itchy rash that comes an goes. Three weeks later and I still can't go 24 hours without the rash popping up somewhere. The good news is, my energy has been up, I feel good - in every other way.

Christmas was nice! Lot's of family came into town! We ate a lot, played games and had a good time. Do any of you recognize these faces? They are all grown up!







Thanks to my cousin Marcia and her dad, we got to go horseback riding.




Now, I have to admit I have enjoyed this break so much that I dread moving forward. First of all, 20 years ago, I had a similar thing happen with my skin when my body decided it would be fun to be allergic to Penicillin. It happened a couple weeks after starting the medicine, and it was present weeks after being off of it. Because of this time frame, Doctors weren't convinced it was the Penicillin until it happened again...but quicker. I ended up on a Benadryl drip in the ER to clear it up and have stayed away from Penicillin ever since. I guess I dread the fight with the Doctors to figure this mystery out when I think I have it solved and they aren't convinced. Here I go again with an unusual, rare and mysterious condition that is enough to annoy me and puzzle my doctors. Sadly, this time, it delays treatment of my original problem. Let's not forget I have lesions on my brain stem that are going untreated right now.

So, what does this mean? Dr. Nick doesn't want to continue any treatment until we resolve this. I just didn't think it would take so long to clear up or to figure out. It means, more doctor's appointments. Monday, January 17Th I went to an appointment at MD Anderson, with an Internalist. They biopsied the rash and have sent it away for testing but don't really know what it is. I had stopped taking the Benadryl and Claritin Friday night and the rash got worse. In the meantime, they told me to go back on on Benadryl - but, full force...Let's hope I can stay awake in the middle of the day. It takes at least 48 hours to get the lab results back. Until then, I am only taking Benadryl.

I am not sure what the next step will be but, when I do start back on some kind of treatment, I look forward to the little shuttle cart from the parking garage to the front on MD Anderson! Ah, the little things in life that make it worth while!

Starting Round 5!!!!

First of all, I can't believe it! Time is going so fast, I am almost half way done! (Thank Heavens!)

Once again, I am starting treatment with a little cold. This didn't go so well last time and it worries me a bit. I hope for the best and will try to stay positive. But, I am so tiered I ache. Physically, my eyes are really tired and fluctuate between dry and watery, my muscles hurt with the smallest activities and I can't get everything done that I want to. I took a long nap Saturday and still got 12 hours of sleep Saturday night. I am about to go to bed now and hope I will wake up refreshed. (ha, that sorta makes me laugh. Like I would really feel "refreshed".) OK, I realize this is coming off more negative than usual but I promised myself this blog would be truthful, and here it is....my truth.

Sunday morning, during our church service, I was inspired by the minister's story about a mountain climbing accident in his teens...a fall from 50 feet that fractured his head and crushed his legs. He was told he would never walk again, yet here he was standing before us. "I can do this." I thought to myself. "One day, this will all be behind me and I will be fine. Trust in God, Misty...keep the faith." But, for some reason these words make me tear up. Even now as I write this. I don't know why. Maybe my "tired" is more than physical. Maybe it is also emotional. Can I make it through this? Can I really see myself healed and re-building my strength and endurance? On a good day, yes! But, they all aren't good days. As my mom used to say, "We have to have some bad days if we are going to recognise and appreciate the bad ones."

We had a busy weekend! The kids had lots of activities. Tabby performed a duo "Hard Knock Life" and did a great job. I'll upload it later. The boys had band stuff then Sunday was full of things...I have some cute pictures I'll share later, as well.

For now, I just wanted to say, "Here I go again! Wish me luck!"

Love you all!
Misty

Post Treatment #2 - Off Week 2 & 3

The last 2 weeks have been really good. We got our computers on the freshman campus, now I just need my studio equipment. I was even able to work one football game and one volleyball game. Since I teach at a high school, I can help out at sporting events and get paid. I was pleasantly surprised at my ability to stay up and alert but, I did it. Yes, I was REALLY tired the next day - but it wasn't that bad. We all had Labor Day off - so it was great to have a 3 day weekend with the family. I rested a lot and was able to meet old TV Production friends Loren Meyer and Denis Lauziere for lunch. (they're not old...oh, you know what I mean - I love you two!) Then, the family and I crashed Kelley and Melanie's house for dinner. (these are friends of ours that we go camping with every year) Here's my kids with their cute boy Ben. They really adore him!!! Thank you Melanie for the casserole (we put it in the freezer to pull out during my next treatment). Here's a little story that I couldn't decide if I should share or not. But, one afternoon, I knew all three of our kids were going to be riding their bikes home from school together at the same time. I got home early enough to get on my bike and meet them - so, I did. I know you just fell out of your chair but it is true. It just wasn't as easy as it sounds and I won't be doing that again. My thoughts were, "I have an hour...it's 1.9 miles away. I can just take my time." I grabbed a bottle of ice water and off I went. It was in the upper 90's that day, I think I made it all the way to the corner before I started to doubt my decision. But, I am stubborn and I kept going because I really wanted to be able to. Half way there, I stopped under a tree and drank my water. Now regretting I ever had this idea in the first place. Then I pushed off for the final stretch and gave up around the corner from their school where I waited for them in the shade. I just felt soooo out of shape, and a little off balanced but nothing else really. I rode slowly home and didn't do anything else for the rest of the evening. I survived! Best part is, the kids loved that I did it! That's all that matters. My Aunt Kay and Uncle Jim have made us dinner for the last 2 Fridays and it has been fabulous - not to mention a God send! I wake up at 5 AM everyday and just can't whip up dinner every night right now. Garrett wants to take cooking lessons from her. I'd just like Garrett and Justin to start cooking anything. But, we're so thankful for her cooking talents and all that she does for us! Here's the highlight of my week - I got to see the dietitian and my Dr. at MD Anderson back to back. First, I met with the dietitian who told me about a new study on Vitamin D. They have found that it turns into a hormone, penetrates the cells and helps them to function normally! Since my cells are malfunctioning, I'll take anything I can to help them get it together. She also gave me some helpful tips to help me this next round with my stomach issues but said I can eat anything that doesn't bother me. They're just big on getting enough fiber, drinking plenty of fluids (no green tea - apparently it counteracts Chemo) and they recommend having Miralax in the medicine cabinet - just in case. Next, they had me running up stairs to see my Doc. Don't worry, I'm no fool, I took the elevator. Dr. Nick feels I am tolerating the treatments fantastically! He was also surprised to learn that I didn't have a prescription for anti-nausea to help me at home. So, maybe that will change everything. He also added a vitamin D blood level check along with my regular blood work and agrees with the dietitian that I should try taking vitamin D supplements. I asked him about exercise and told him about my pitiful attempt to ride my bike and he surprised me by saying he wants me to exercise 3 times a week when I feel up to it. So, I guess I'll be getting on my bike again. I think I'll just stay closer to home next time. And it won't be happening the week of treatment, that I know. Oh, he also wants me to get a flu shot since I work in a school. Usually, they don't recommend that for Chemo patients. David and I went to a taping of the Family Feud Show Saturday night. That was fun. It is always fascinating to see what they don't show you on TV. The very first question for example....the contestants answers were so lame - neither one got a right answer. So, they scrapped the question and gave them a new one. I think the question was, "Name something a husband doesn't want to be told how to do by his wife." One guy said, "sleep" and the other guy said, "eat". The new host is Steve Harvey who is very entertaining and ragged on the contestants a lot. They must edit tons out of the final show. The audience warm up dude was great, too! He made us dance during a break. Which I did with great pleasure! Actually, it made me miss dancing. Amy S. you and I need to go out dancing again. I also saw some familiar faces from my old TV days...Dave, Frank, Tracy, Jamie and Tanya. That is always the best part for me. You all look marvelous! Monday I start my 3rd round and the Docs are in agreement to increase my dose from 150 to 170. I went in for blood work on Friday. This was going to be the first time they used my port for a blood draw. I think it is supposed to work. Unfortunately, the nurse couldn't get the needle in the right spot. She kept trying until I begged her to stick my arm - which she gladly did. I asked her what she thought was wrong and she just said my port is really deep and the quarter inch needle wasn't long enough. I hope it was just her and it goes in easily Monday. Which reminds me, I should go sit in my hot tub before Monday. After all, if my neighbors cat can enjoy our sink, I should be able to enjoy my hot tub. Yes, take a look at this wacky cat in my sink - he reminds me of when I had a pet bird that loved baths. Tabby thinks we should turn it in to America's Funniest Videos. These are the little things in life that keep me distracted from my own drama so I can keep smiling.

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? :)

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.

Post Treatment #1 - Not Great!

My last treatment post was published right after the photo was taken of me, my mom and my nurse before we left MD Anderson. This really was the most uncomfortable day for me so far. I actually wrote most of the blog at home before I left for my appointment. I didn't write much while I was there because I wasn't feeling great and I really hadn't figured it all out. As my mom and I made it down to the first floor to leave, I decided to ask about the cute little MD Anderson Golf Cart Limo I have seen go back and forth from the parking garage to the center. They gladly called it around and we got a ride to our car. Between it being my 5th day of treatment and my mom still recovering from her biopsy, I felt we deserved to be spoiled a little. I'll take a picture of the cute cart next time I am there.

I came home to a house full! The boys were back from camp and when Tabby got home from Disney, I had a lot of stories to hear! We drove over to Connie's where we had the best dinner waiting for us, compliments of our church! Thank you, Donna Borko for coordinating and Thurlene and Don Bouyett for the fabulous food! The timing for this was perfect, I was really starting to melt. I had to eat quickly and lay down. I developed a little fever and was worried about over doing it. After all, I was told that I have to call my Doctor if I get a temperature over 100.5. I was at 99.7 and I didn't want it to get worse. I also had a burning knot in my stomach. I have been resting ever since and finally felt like sitting up to write this. I feel a little better right now but as my new friend Ann (a cancer patient I met yesterday) advised, I am taking it easy and letting my body rest. It's not easy doing nothing. I hope this is the worst of it!

To all my friends reaching out through email, Facebook and phone calls - thank you! You are what keeps me strong and what will get me through this.
I love you all!