One Year Later! Happy 2012!

I can't believe this much time has gone by since the last time I wrote. Nothing was happening too quickly, so there wasn't anything to report. Now that 11 months have passed, I have a lot to report. My Cytarabine infusions were stopped in November 2010 because my liver was showing signs of stress (it is back to normal now). They started me on a Chemo Pill December 1, 2010 and my skin broke out with little bumps. They were getting worse and nothing would get rid of them, so we stopped that medicine December 22ND. The rash I had was biopsied and determined to be an allergic reaction. (which took 6 months to go away)

Then somehow, 3 months passed by, I saw my doctor Monday, March 14Th to discuss future treatment options. From this appointment, we determined that the lesions were still active and we should pursue treatment as long as it seemed necessary. So, the next step was to start me on another Chemo Pill which apparently wasn't supported or approved by my insurance company - so that never happened. While I waited for the next plan of attack, my arms (especially the right) got weaker and developed intense pain. Both elbows were incredibly painful to the touch, my grip became weak and the ability to lift a glass of tea was getting harder and harder. One Sunday, I couldn't lift the Hymnal out of the pocket in the pew in front of me. Then at the grocery store I had trouble picking up a bag of marsh mellows from the bottom shelf. David comes to my defense and reminds me that it was JUMBO marsh mellows, so it would have been tough for anyone. (ha ha) But, when I can't lift a full glass of tea or soda at a restaurant, it gets a little depressing. By the evening, I would be so fatigued, I felt like I was 90 years old. I ached all over, I had trouble walking and I just felt icky all over. By the end of the summer, I was truly worried about going back to work and making it through the year.

So, to prepare, I started walking daily, bumped up my vitamin D, and joint pain vitamins and started drinking a little 'Willard's Water' with my vitamins. Surprisingly, come August, I felt 90 percent better...here we are in December 2012 and I would say I am still holding strong at 80 percent better. I am not sure if it was the walking, the vitamins, the Willard's Water or just TIME for the Chemo to really take effect but, people at work even said, "Misty is back!" I am at my best in the morning and fade quickly at night, but who doesn't anymore? Life is so busy with my sons going to High School and my daughter in Middle School. Time just goes faster and faster. To sum it up, I have been in good shape for 5 months and I am not going to ask any questions. I am just happy that I am doing so much better. LCH is known to go into spontaneous remission and what triggers it is not known -but, I think mine is in remission now.

On the family front: a lot has happened this year! We lost treasured pets of almost 17 years. Some of you know them - our dog, 'Demitri' and our cat 'Jasper'.

Tabby started Middle School and the twins started High School. David's office lost their office manager to breast cancer and have been through a major re-structuring. Over-all, it has been a long, tough year. We welcome 2012 with the adoption of 2, cute little kittens. A fresh new start in so many ways.

Happy New Beginnings to You and Yours in 2012!

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

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.