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 fiery 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 knocked 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 hysteria.

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!

Houston Trip to See My Hero - Dr. McClain

The trip to Houston was well worth it. I finally sat face to face with a man who not only knows about this disease but has 500 active patients with Histiocytosis (LCH). Most of those are children and I am still in the rare category. I am only 1 of 10 adults with this exact problem that he is treating. But, I have always been the "only one" my doctor's had so, this is a refreshing change. I am not alone in this anymore. As for managing that many patients, he did admit it can be over-whelming at times and could use more help but he already has Dr. Allen, who is 20 years younger than him and instrumental in the research of this disease because his background is a little different than Dr. McClain's.

So, we arrived at the Doctor's office a little early but at 2:33, 3 minutes passed my appointment time, I was called back. A nurse checked my vitals while the famous Dr. McClain was hovering at the door waiting for her to finish so that he could come in. He's nothing if he isn't prompt. He even told us later that he doesn't like to keep his patients waiting. Finally, here I was, starring at the man who can give me all the answers - if they exist. He seemed just as privileged to meet me as I him. He added that this is the reaction he gets from most of his patients. He had a large folder in his hands with all my records (from mailing them, I know they weighed 1 pound.) He said, I have read through your history, but I would like to hear about it from you. So, I started at the scary beginning when I was 21 years old and woke up from a reconstructive knee surgery with a severe case of Diabetes Insipidus (DI) and talked through the next 6 months of symptoms that pointed to other pituitary damage and finally the removal of a skull lesion that was biopsied and confirmed to be LCH. Then the highlight of my life, the conception of Twins, a daughter and signs that the DI had improved. "Spontaneous Remission" they call this. (FYI - he doesn't think the disease was caused by my knee surgery; just a coincidence)

I then jumped to what I now know as my first sign of this disease being active again, 2006, when my right arm when numb and the hand was not functioning normally. I saw several doctors, did nerve testing and an MRI of my arm, they couldn't figure out what caused it and I got tired of going to doctors. It gradually improved and after a year, the feeling started coming back. After that, it was little things I started noticing, like balance, memory, speech, fine motor skills...all of these things declining. Surfacing with irregular occurrences but still a little more than what I thought was normal for my age. I was still able to conceal it but observed myself more carefully. Fast forward to the fall of 2009. I began to get headaches that became migraines and my fine motor skills in my right hand...became noticeably worse. I started having trouble with things like putting on eye-liner and lipstick. Fatigue was also more frequent. I just didn't feel the same. So, I mentioned these things and a few other details to my Oncologist at my annual check up in January 2010and she ordered the MRI which revealed "hyper-intensive activity on the brain stem".

I was told by a neurologist in February that I have lesions on my brain, these are not tumors, they are lesions. It is a concentration of these histiocytes damaging the nerves in my brain. But I was also told, that we couldn't do anything about it - we would just watch it. This scared me more than anything, because I didn't want to just "watch" this thing shut my body down piece by piece. This is when I started looking for answers and found Dr. McClain.

Dr. McClain knows exactly what has happened. One percent of the patients who have lesions on their skull, get this on their Central Nervous System (CNS). This is a result of the bone tumor I had when I was 21. I am now in that 1 percent. He only has 9 other adults like me. He has had more children with this and has only been treating adults for 4 years. The longest he has followed up with a patient with this (LCH-CNS) treatment is 8 years. Specifically, a child he started treating at 8 years old. That child is now 16, his fine motor skills have improved and so far, the disease has not returned. He said that CNS involvement seems to occur 3 to 7 years after the presence of the skull lesions but there is no way to tell exactly how long mine has been active. We just have to go with what we know and that is at least 5 years, according to my 2005 MRI. You didn't miss anything. I didn't mention that the retrospective look at my 2005 MRI reveals some of these lesions but they weren't noted then. David asked for clarification on his diagnosis and he said "without a doubt, this is a classic case of Histiocytosis and the MRI of the brain and his own physical exam are conclusive for this now being active in my brain." He described it as an over-production of the "BAD GUYS" in the white blood cells. These destructive cells can attack anything in the body. He also said I am unique because my DI seems to have improved and I was still able to conceive. Most people with DI have to be on medicine their whole lives and I haven't been on mine for years...so this is a sign that the body can repair itself. And it seems my body keeps repairing itself.

So, what now? He is the doctor who has developed a treatment protocol that has been used enough to be proven effective. He will advise my doctor in Orlando and over-see my treatment from Texas. It is a mild chemo - like cancer is treated but, this is NOT cancer. One week on, 3 weeks off, for 12 months. The 1 week on will be out patient, once a day, for 5 days, 1 hour a day. There are some side effects but we will know more once I actually start treatment. The side effects he is aware of are mostly nausea and fatigue. Like any other chemo treatment, my oncologist will monitor my blood levels and advise me as to the status of my immune system throughout the treatment. He plans to start a low dose and dial up from there, pending my tolerance. To his surprise, adults can't handle the same dosage as kids. I will have a spinal tap before I start treatment and one at the end of treatment. This will help them study the histiocytes in the blood. He also recommended that I have an endoscopy to help determine what is now happening with my esophagus and constant acid reflux problem. I have to be honest, I don't expect this year to be easy, but I am ready. I have lots of support!!!

Finally, he feels we have caught this early and said it is good that I took the proactive approach to finding answers. He also believes this treatment will stop it anywhere in my body. So, if it is active somewhere else that we haven't detected yet, this will stop it. He agreed that with physical therapy, it is possible to repair any physical damage. He even approved my use of the Wii Fit to help with the process. Look out kids! Mommy has to go to physical Wii-therapy! :)

Over-all, I have been validated. I feel like I am in good hands now and though this year might be a little tough on me and the family, it is with a good purpose. I refuse to stand by passively and let some silly disease have the best of me...I will stand up against it and fight it off will all my might!

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!

David and I got into New Orleans late last night. We slept in a little today and are going to take the day to rest and digest the information from yesterday. I was very prepared for the appointment with Dr. McClain and heard what I was expecting to hear. I have started writing the details (it is like a journal - very long) but won't publish until I have a chance to talk to the kids. We plan to be home Saturday evening. Expect the post to publish Saturday night. I know you all are eager, please understand, this is something I didn't think about until now.
Just heard from Kathleen, my LCH-CNS pen pall. She is not doing well today and may not be able to meet with us after-all. Please pray for her. Love you all!

Just left Dr. McClain. 2 hrs well spent. He confirmed my diagnosis & believes his treatment will cure it. I am very happy we made the trip. I'll write more soon

Just arrived in Houston. Nice trip. Great weather, no traffic. Good company! will eat dinner soon and maybe drive around. Sleep in a little. Appnt. @ 2:30

We decided to turn this into a road trip. Left Orl. @ 6:30 pm & are stopping in Tallahassee. GO NOLES! All is good, going to get rest for a long day tomorrow.

Welcome family and friends!

This is how I will keep you informed from here on out. I got the idea from a new friend who is a lot like me and going through the same thing. It makes sense. I can write about my updates, and you can get as much or as little information you want as I go through this journey. And I can stop worrying about forgetting to email someone. You can continue to email me directly or call when ever you like. I also have unlimited text messages and tend to get behind on my emails. You can ask me anything, I will talk about it, I don't mind. I am also on Facebook and you can always call. I hope to be able to post what I find out from my trip to Texas here. I should make a documentary (my friend Lauren's idea).  If you need a summary of my medical history - here it is: I woke up from my reconstructive knee surgery in 1989 with Diabetes Insipidus (excess loss of water - inability to retain water AKA "drinking problem" :) pituitary damage was noted later and a migraine that lasted 3 months. Turns out I had a skull lesion sitting on my optic nerve. I had it removed and tested. These were classic symptoms of "LCH" or "Histiocytosis". I was told I couldn't have children, but you know how that turned out. Then I seemed to go into spontaneous remission for a long time. Then in 2006, my right arm went numb and was weak. I was gradually noticing changes in my balance, memory, speech and fine motor skills. This was gradual and I was able to adjust and hide it pretty well. Then this fall, 2009, I started getting migraines - daily. My fine motor skills were suddenly getting worse. When I told my oncologist at my annual check up, she immediately ordered an MRI which revealed lesions on my brain stem and left frontal lobe (hence the numb arm).
Here is the official web site of this wonderful 'rare' disease I have. I am 1 in a million they say...and 1% of the 1 in a million get what I now have. LCH-CNS

Click here for the disease information.

Check back after my appointment with the 'Super Doc' Dr. McClain - May 20th!. Click here to read about the Super Doc.