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!