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). "LCH-CNS" - As I embark on a journey... (too dramatic) Here I go again...rare medical problems that... (no, I don't like that either) My attempt at being efficient in communicating with my family and friends - updates on my health - Histiocytosis. (OK, boring but to the point)
Showing posts with label Post Treatments. Show all posts
Showing posts with label Post Treatments. Show all posts
Monday, September 13, 2010
Post Treatment #2 - Off Week 2 & 3
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). Tuesday, August 31, 2010
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? :)
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? :)
Sunday, August 8, 2010
Post Treatment #1 - Much Better
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.
Saturday, July 31, 2010
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!
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Short Cuts to My Posts
- Between Treatments
- Details will come
- Diary Stuff
- dose
- Dr. Appointments
- E.R.
- Endoscopy
- histiocytosis
- Houston Dr. Visit
- I promise
- Interview - Dr. #1
- LCH-CNS
- Lumbar Puncture (Spinal Tap)
- MD Anderson - first consult
- MRI - Spine and Brain
- MRI. Check-up
- Port
- Post Treatments
- Round one
- School is out - MRI tomorrow
- Tests
- Thoughts and Fears
- treatment plan on hold
- Treatments