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!

Day 5 - Cycle 1

Whew, number 5, last day for the first cycle! (11 more cycles to go) I had trouble falling asleep last night but still feel fine. I'm not crazy about having the IV in my arm. I think this is what kept me up last night. I am so aware of it and it hurts a tiny bit - enough to remind me it is there. Did I mention that Tabby had a friend sleep over? They were up late too, but they weren't keeping me up. My Aunt Kay is taking them to Disney today. They'll have a blast.

I have been waiting for today to talk about the thing you all are thinking but not saying..."I still have my hair!" By the way, I haven't cut it since my MRI in January because I didn't know what would happen to it. Once I knew I would be starting Chemo, I thought about having it cut to make a wig out of it, then I thought about donating it. I even called my hair dresser about it. But in the end, I chickened out and thought I would keep it as long as I could. (selfish - I know) I have to admit, I am starting to feel like the odd ball at MD Anderson because I have more hair than anyone I have seen there. Maybe I should take my friend Jennifer's advice and get a skull cap or just put it up in a hat so I fit in better. Don't think for a second that I think it will look this good all year...I don't. Even if I don't lose it, it is bound to thin out and lose its luster. So, in the mean time I am making the best of it and appreciating every last minute I have with it. I am also planning ahead if I do lose it, I have been eying a couple of headdresses I would like. What do you think?

Well, I guess it is all routine now. Nothing to different or surprising happened today. We were on the 5th floor in the 4 person suite with a nurse that graduated from Winter Park High in 2001 (where I now teach). She's real cute. We also had a couple of breast cancer patients that were upbeat, real friendly and we shared our stories with each other. I like to watch peoples' faces when I tell them I have something eating my brain. OK, I don't say it that way but, from the look on their faces, you would think that is what I said.
OK, I have to admit it, I feel a little icky today. I don't know exactly how to describe it but I am not feeling as good as I have the past four days. I am all for taking it easy this weekend. I am sure I will be better soon. Don't worry, I am still holding in my lunch, I don't feel that bad. Today, I thought I would take the picture at the end of my treatment so I have a true BEFORE and AFTER shot. This week is over, YEA, I did it!

Day 4 - Cycle 1

I slept in a little longer today, so I might be getting tired but, I still feel fine!!! Everyday in this place brings a new and pleasant surprise. Maybe it is me, but I am enjoying this a little too much. My goal is to keep enjoying it all year long.

So, today I had the pleasure of my Mom's company. She is recovering well from her biopsy last week and happy to know it is benign!!! We were sent to the 8th floor today and actually had the room all to ourselves. After today, I can say the 8th floor is not so bad. It makes a big difference if you have someone next to you throwing up or not. Apparently, Thursdays, they have tea! Look at this cute tea cup. Each cup was different and I was asked to pick the one I liked. They also had pound cake! I don't turn anything down. The icing on this cake was that is was being delivered by one of my best Freshman students!!! Here is a picture of her and her twin brother!!! Aren't they cute. Her mom is standing in the hall behind them. She told me that she got the best Mother's Day gift from her daughter because of what I taught her!! I guess she made her mom a video. I love to hear that stuff.
Before I could finish my tea, I was visited by a Cancer Survivor, Walt. He was very entertaining and 'loving'. He came in singing, talked big and loud, then suddenly became soft and caring. He joked with my nurse Ivette and said he is here every Thursday. I am starting to see a little pattern each month as I get to visit daily. This will keep it fresh and interesting.

When Walt left, I noticed my arm was bleeding, so we had a little more trouble with my IV. Can't wait to get the port!!! Although, Ivette thinks after fixing the IV, we can leave it in for tomorrow. That might be alright. I don't know but I am going to try it. The rest of the time, Mom was crocheting while I wrote my blog and WOW, I am done. It was fast today. Only 2 hours!!! Gotta go!

Day 3 - Cycle 1

It is day 3, of this first round and I had another good night. I feel fine again. The only thing I was dreading was the needle but my nurse, Curtis, today, was really good. It didn't even hurt. He said, "You will love the port." I don't doubt it.
Connie is my escort today. As we approached the elevator on the first floor, we were greeted by a long time friend, Sam Reynolds. He and his wife volunteer here on Wednesdays. He escorted us up to the 5th floor, where I got to be in the 4 person suite again. I think I like this floor best. I even got another cookie today, which I didn't get on Tuesday so maybe the cookies don't make it to the 8th floor. Anyway, Sam sat and visited with us a bit, read Psalm 23 and prayed with us before he left. This was very sweet and a welcomed visit. I look forward to seeing him and Susan next month.
Tabby is with Grandpa. She really wants to see where I get this done and how it works but the age requirement is 12 and up so, we tried Skype.
It almost worked. We could see each other but she couldn't hear me. We had to call her on the phone and try to talk her through fixing it. Grandpa sat down and we tried to help him but I think he had trouble too.
We watched him try to figure it out for a while then gave up. We'll try again another day.

Day 2 - Cycle 1

Not as nervous for day 2. I slept great through the night, even though I woke up every 2 hours, I felt like I had slept a long time. After Tabby & I had breakfast, we spent some time with our pets and before we knew it, it was time to go.

Uncle Jim brought me today. This is a great way to get people to spend more time with you but I wouldn't suggest it for just that reason.

MD Anderson has 2 floors for treatment (#5 & #8). I have now been on both. Yesterday, we were in the 4 person suite on the 5th floor and today we are in a double room on the 8th floor. This double room seems a little nicer but we are closer to the other patient so, it feels like less privacy... especially when they start throwing up. My nurse today is Heather and she doesn't stay in here the whole time, I guess her desk is out in the hall somewhere. Anyway, I brought my computer today and I am typing this as they pump fluids in me. So, if I stop making sense, you'll know why. I am also having to type with one hand because of the IV. The nurse said the Chemo will build up and I will feel worse later in the week. Good to know, although I was really hoping the first day was a sign of how it will always be for me. I can still believe that if I want to. As for this IV thing, I can't wait for the port. I don't have the best veins for needles and the nurse had trouble getting a vein today. She poked me twice and I still have 3 days to go. I am going to be a pin cushion by Friday.
Actually, this experience has been pretty relaxing so far, even Uncle Jim enjoyed himself. Here is a portrait of him enjoying himself. Can you see his enjoyment? Look closely, it is there. He could be on the cover of a magazine for "Misty's Relaxing Get-a-way".

Over-all, another good day. I am now home and still feel fine. Tabby is getting out the cards again as I finish this blog. I am expecting to have another good night sleep and start all over again tomorrow.

Day 1 - Cycle 1

Waking up this morning, I had some butterflies, after all, what is a girl to wear to her first day of Chemo? Thankfully, Tabby helped me pick out my clothes and the rest of the day went well. The best news is that my first day of Chemo was very good. How can it not be when you get served a cookie in the waiting room? I have thoughtfully packed on a few extra pounds this summer so, I am ready for the loss of appetite and nausea. BRING IT ON! Yes, it was a pleasant experience and I am now home, playing cards with Tabby as I write this. Aunt Kay met us for a slice of pizza this morning, took me to MD Anderson and brought me the last prayer shawl my Maw Maw made before she died. I kept that close by and I could feel all the positive thoughts and prayers coming my way from my friends and family today. It must have worked, because I felt so good all day.
We were there a long time and I got a little tired and blurry eyed from some of the meds but that didn't stop me from talking to Nurse Leslie. We are doing an IV this week but planning the port before the next cycle. The nausea medicine really made me feel the foggiest. Other than that, I could smell and taste the saline but when it came to the Cytarabine, "nothing". No taste, no smell, no nausea. But, I felt a little groggy...hey look, my very own private TV. This is great! Who cares if I am groggy? Live is good! Ok, I am still in the honeymoon phase but I think I was prepared for a rockier start. I can't complain. I am alert, I feel fine, was able to walk to the car, eat dinner, take out the trash and the recycle bins! How 'bout that? My temperature is 98.4 and knock on wood, I feel fine. Keep those prayers, thoughts, and what ever it is you're doing, coming this way!

The Night Before Treatment #1-new pictures

Today is the day before I start my treatments and it was terrific! Tabby and I took the boys to camp, wished them well, and left for a Girls' night out.

At her request, our first stop was Petco. We saw so many cute kittens and hamsters that we had to take pictures of them. Tabby picked out 2 cats that she would have liked to have taken home. (of course) Michael's was next door, so we had to walk through there also - so fascinating. (cousin Loren works there but wasn't there tonight.) Then, we went to Wendy's for dinner where we both had a cup of chili, fries and a frosty! Yum! With our full tummies, we stopped by Grandma and Grandpa's house to tell them all about the boys' counselors and how much fun we think they will have this week.
Finally, home where we made Oreo, our hamster, our first priority. We let her run around in her ball while we cleaned her cage. Once she was back safe and sound in her clean home, we rewarded ourselves with a night swim. We wondered if the boys were getting to swim tonight, but Tabby thinks they have to wait till the last night for a night swim. We swam some laps, watched out for our dog who keeps falling in the pool and played with a beach ball. What better way to end the evening then to sit in the hot tub and watch the fire-flies. Off in the distance, Tabby saw a lightening storm that became more interesting than the fire-flies. The lightening was flashing every 5 seconds - it was awesome looking. We knew it was a big one but we were surprised to learn that it was way off the coast of Tampa. Wow, I didn't know we could see that far from here. Surprised to learn that it was 10 O'Clock, we have gotten ready for bed and are writing this blog together. What a great day! Thank you Tabby!

First Round Is Scheduled

Alright, no getting cold feet now (it's too hot for that). Although, I think I have butterflies in my stomach. I am scheduled for my first round of treatments. Monday, July 26th through Friday, July 30th - every day, as an out patient. My Mom and Aunt Kay will be with me on Monday. All 3 boys will be at camp and Tabby will be with Grandma.

I am trying my best to have a positive attitude. I have to remind myself daily, why I am doing this. Since I have been diagnosed, I haven't gotten better on my own. It hasn't gone away. In fact, it has gotten gradually worse. It effects how I feel 24 hours a day. Though I can still hide it well, I don't want to let it progress to OBVIOUS or FATAL. That is why I am doing this.

This is my pledge, I will repeat this to myself over and over. "This will be easy on me...I will handle it well...I will be able to keep working...and it will cure me!" Feel free to join me in my pledge. Maybe if we all repeat it over and over, it will happen. Of course you could replace "I" with "Misty" unless you need this pledge for yourself in which case I have to charge a fee. (kidding of course)
Keep the prayers coming! I DO believe in the power of prayer! Look at my kids, living proof that prayer works!

Interview - Doctor #2

We went to MD Anderson today and got to meet Dr. #2 and #3. Thank you Tracey and Susan for staying with the kids this morning - we were gone all morning. I have made up my mind and David is right there with me. Our experience here today gave us a stronger sense of confidence and comfort. Dr. #2 entered first, did an exam, asked questions and left. He and Dr. #3 consulted with a hematologist, then came back to my room. Again, I had and an exam and recapped the progression of my symptoms over the last 4 years. Through this whole process, both doctors were very professional, positive and educated on Histiocytosis. What a relief!

Here's how some of my dating game questions panned out. When it comes to our confidence in the Texas specialist (Dr. McClain) and his treatment plan, they both agreed that they would make the same choice we have. As for my current prognosis, they agree that it is time I get treatment...to wait would be scarier. Their knowledge of the Chemo "Cytarabine" is greater than the other Doctors. In fact, they considered my starting dose to be so low that they don't think low blood counts will be an immediate concern. For my treatment, the port is the best way to go in their opinion, and can be implanted easily at their facility and the Chemo treatment can also be done as out patient. So, what next?

He said he would be waiting for my call but once I left a message with the nurse that "I would like to go with MD Anderson and to move ahead." She will set up the appointment for my port and I can expect to be starting chemo in the next week or two. I have made this call...O.K., this is real...I feel relief and fear all at the same time. Thank you all for your thoughts, prayers, calls and cards!

Second Thoughts on Dr. #1 at Florida Hospital

One week after David and I met with Dr. #1 at Florida Hospital, I am starting to think he's not that great after all. Here's why, the doubts and questions he had regarding Histiocytosis have been swirling around in my head and I have looked up some articles on line which I have shared with David who I think I can say, feels the same way I do right now. Each time I do this, I get frustrated because "ITS ALL THERE!" If this doctor had just spent 30 minutes reading Dr. McClain's Articles, the Histio.org site or just googled LCH-CNS, he would see that I am a "Classic Case". If he really looked up LCH-CNS, and read my history, he would know my symptoms and MRI are grossly in line with other Case Studies of LCH-CNS. He would also know that this is "Eventually progressive neurological degeneration that renders the patients wheelchair bound and severely disabled and may lead to a fatal deterioration in the worst cases." as stated on the Histio.org website for my Type VI lesions.

I checked out MD Anderson today when I offered to personally drop off my MRI CDs. This center definitely makes a good first impression. Clean, pretty, VERY NICE people to greet you and a Cello playing in the lobby. I could be happy there for a year. All it will take for Dr. #2 at MD Anderson to win me over is a little more enthusiasm with a case that is different from his usual suspects. This will be obvious if he reveals that he has done his homework prior to my arrival. (He had to review my case and accept me before I was able to set an appointment, so he has had plenty of time to do a little homework.) My appointment is Wednesday, July 14th.

I think I am just starting to get anxious because my dizziness and balance has gotten worse. I find myself wanting to stay in one place and not move around. This goes against my nature as most of you know. I like to be active and social...but I don't feel right, so it makes it hard to be myself. Today, as I tried to put coins in the parking meter, I kept dropping them. I couldn't get them in the slot. At home, I had trouble getting my dog's pill out of the container and into a hot dog. I have also had some trouble with slurred speech the past couple of days. I am hoping some of this is elevated by my sinuses acting up but deep down, I fear it is mostly this stupid disease progressing.