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!

1st Oncologist Appointment in Orlando - BOMB

Thursday, 5/27/10 - I met with my Orlando oncologist to talk about my treatment set up by the specialist in Texas. Luckily, I was not alone. My mom, Aunt Kay and David were all there with me. To make a long story short, she is not the right doctor for me. I have to admit, I try so hard from day to day to stay strong that when I come down, I crash hard. Boy, I really crashed hard after this appointment. I couldn't stop crying. It didn't help that I have felt "more intoxicated" these last few days. This goes along with the lesions on the brain stem. Walking into a big room and looking around makes me disoriented. If I appear drunk, I promise you, I'm not but wish I was. If I do something that doesn't make since IE: put chili peppers in the tomato sauce for spaghetti...please understand I am not trying to be creative - just had a moment of confusion. I have better days than others and I am always trying to cover it up. So far, I am doing well but I feel it is getting harder to hide.

OK, before I go off on how my Oncologist spoke to us, let me say, we are seeking a 2nd opinion. She started with "He wants you to have Chemo for one week, 5 days in a row and have 3 weeks off (I knew this) but we don't do that as out patient. I want to check you into a hospital for a week at a time because of the neurological risks." As if that wasn't bad enough, she continued to spew out the worst case scenario with my treatment like firy daggers. Things like my reaction, side-effects, low blood counts, transfusions, kidney and liver tests and permanent neurological damage. Yes, I know all of this is possible with Chemo but she obviously didn't want to be part of my fight against this. Maybe she was testing me to see if I really felt I needed it. I responded with tear filled eyes, and a trembling voice, "I am already feeling neurological damage and I am afraid of what's next. The thought of letting it continue scares me more than the fight to stop it." I was a crying mess all night. She really knocked me back down to where I was the first weekend I got my MRI report. I was feeling hopeless again; I started to doubt that I had a chance and that there was a believer was out there in Texas wanting to help me, or that I had any real shot at fighting this at all.

Before I knew it, Friday morning came, I woke up and put my armor back on. I started making phone calls and as a result, I now have 2 promising candidates. I feel like I am on the dating game. Doctor number 1 is a Neuro Oncologist with ORMC who claims to have had 2 Histiocytosis patients and worked with Dr. McClain in Houston and another doctor in Dallas regarding these patients. He claims he would be interested in my case. And, doctor number 2 and 3 should not be a surprise to any of you - they come from the MD Anderson Cancer Center. Both are Neuro-Oncologists that would both welcome my case. So, medical records were faxed today and appointments should be set soon. I feel hopeful again. I wonder who I will pick? "Doctor number 1, If we were in the middle of Chemo treatment and a big lightening storm knock out the power, would you A) light a romantic candle? B) talk to me in a warm, soft voice to calm me or C) make sure my medicine pump had a generator to keep going? Doctor number 2, If I lose my hair will you A) tell me how my shinny white scalp brings out my eyes? B) say I look better without those big bushy black eyebrows or B) buy me a wig? " I am having too much fun with this. Just watch me ask one of the doctors these questions in a state of nervous histaria.

I had a better day at work today than yesterday but physically, I felt awful. I am sure the stress doesn't help. I have had a headache all day, and I feel even more disoriented than normal, drunk like. I just turn my head and I am thrown off balance. I did a number on a computer disk as a student and I were working at a computer. Somehow I flipped it up and when I tried to catch it I knocked it out farther. We both scrambled for it and laughed it off. Which reminds me of a funny story that now makes perfect medical since to me knowing my recent CNS diagnosis. In my first year of teaching (6 years ago), as I lectured and circled behind the class, the TV remote in my hand became a little unstable. So, I tried to correct myself and my fumbling, but instead, I ended up spiking it like a volleyball into the back of a student's head. The student yelled, "Owe, Mrs. Gentle!" as he grabbed the back of his head with his hand. I felt so bad, but saw the humor in my clumsiness at the same time. (I love slap stick comedy) I broke out laughing. I tried my best not to laugh but kept picturing how silly I must have looked and would snicker throughout the rest of class. I still can't tell that story out loud without laughing. In fact, it is in the Winter Park High School Year Book this year as my most embarrassing teaching moment. I have another one but didn't want it published. If you ask me about it, I might tell you one on one.

Keep the prayers, positive thoughts and best wishes coming this way, not just for me finding the right doctor and taking the best path but for David, the kids and all my wonderful parents!