David Meets Dr. #1

Wednesday, June 30th, I went back to Dr. Chowdhary (Dr. #1 at Florida Hospital) for a couple of reasons: First to follow up now that I have completed all my tests and second so David could meet him. Over-all it went fine and we would be ok continuing treatment with him at Florida Hospital but, we still want to meet with Dr. Nick at MD Anderson. What frustrated us the most about this appointment, we can't fault him for. He doesn't know us from a hole in the wall and has a small period of time to digest and assess what we have lived with for a long time. So, he asked both of us a lot of questions. Things like "What symptoms are the most bothersome day to day? Do you understand the toxicity risks with Chemo?" He asked David to describe how I am when something is wrong, do I complain a lot and right away or not? David's answer was, "Misty told you that she noticed her symptoms getting worse in the Fall of 2009 - she didn't tell me until January of 2010." He also showed some concern because these lesions haven't been biopsied but felt better when I reminded him that the tumor on my skull was biopsied. David also told him that Dr. McClain had looked at my medical history and recent MRI and was positive, without a doubt this is LCH-CNS - he has seen it several times before. In fact, my MRI reports have it in writing that this is a rare sequella of Histiocytosis now on the brain stem. We understand, he has to cover all the basics so he can write in his report that we discussed all of this but it just gets exhausting to do over and over. (Here is a screen shot of one of the lesions. The glowing spot is a lesion - they added the text box and arrow, not me)

Results from my Lumbar Puncture and MRI don't show anything new or alarming. My biopsy from my endoscopy showed "Numerous Esophagials that are consistent with Eosinophillic Esophagitis". I had already put out a call to Dr. McClain about this and his partner called me to clarify how it relates to me. It appears to be a secondary side-effect - not to worry and yes to do the treatment. This is how I understand it. The lesions are causing muscle problems with the esophagus which causes acid reflux problems. Chronic acid reflux problems lead to this - "Eosinophilic Esophagitis" which is a build up of white blood cells beneath the lining. If it goes untreated, it can lead to Esophageal Cancer. So, I will do the treatment for 6 weeks with the inhaler "Flovent" and for the acid reflux discomfort I can take Prevacid. By secondary side-effect, he means it is not directly caused by histiocytosis but the histiocytosis which has caused lesions on the brain stem are causing problems with the function of my esophagus which then caused other problems. Does that make sense. This is how this disease works: If the lesions interrupt functions of an organ, we have to treat that part of the body for the problem it has with a specialist in that field. You can see why it takes a team of doctors in some cases.

So, not much to report other than we are taking it 1 day at a time. They are setting up my surgery for the port within the next couple of weeks. Treatment will start soon after that. We are good for now.

Endoscopy Today

Aunt Kay picked me up at 9 AM today to take me to my endoscopy. (Thank you Aunt Kay for taking up half your day to hang out with me and of course for lunch!!!) Arrival time was set for 9:45 AM but the procedure didn't get started until noon. I was instructed not to eat or drink anything after midnight the night before, even though I begged that I have a condition where I don't retain water like the average bear, they still said, "Nothing after midnight". Anyone who knows me knows I can't handle going very long without something to drink. So, I actually drank a large glass of water at 1 AM because I knew my procedure was set late and oddly enough, they set the cut off time for food and drink to midnight no matter what time your procedure is scheduled. But on the way there a little after 9, I was so thirsty I got out a piece of gum. This held me over but I was told it would delay my procedure an hour and that I could have had clear liquids up to an hour or two before...I wish I would have known that earlier. Oh, well.

Why the endoscopy you ask? Good question. I have had a progressively worsening discomfort with my esophagus for 8 months now. It started as an evening heartburn type problem after dinner (which I never had problems with before except when I was very pregnant) and by March it was an all day discomfort after anything I ate or drank no matter how little. I feel like I have something stuck in my throat, most of the time and I have coughing fits after I eat. Eating and drinking less is the only thing that helps tame it but it hasn't gone away at all. My first neurologist said it made sense with the location of the lesions but all my doctor's agreed that I should get it looked at by a GI just to be sure we weren't over-looking a separate issue that needs different treatment.

When they rolled me back to the operating room at noon, I was able to have a quick conversation with Dr. Ruderman. He is a very nice doctor with good bedside manner. I could become a Doctor critic when all this is over. Maybe I'll start a reality show because the world needs another reality show. Anyway, I reminded him I was his rare histiocytosis patient and he remembered all about me. I commented that in our consultation, he had said it could all be stress related since I had been through a lot. He replied, "But you are a fighter and you are going to make it through this!" Then they put a pacifier like thing in my mouth for the camera, I felt my IV start to burn and realized I was about to go out. So, I put up 5 fingers and counted from 5 to 1 with my fingers. I guess I did that because I am used to doctors saying, "Count backwards from 10" and since I couldn't talk, I went for the sign language approach. He just smiled at me.

The next thing I knew it was 12:30 and I woke up next to Aunt Kay. Dr. Ruderman came in and said it all looked good. I have a herniated stomach but so does a third of the rest of the population. It feels good to finally have something everyone else has. OK, not really. He did the biopsies as planned but doesn't think they will come back with anything. His conclusion is that the problems I am having are from the lesions on my brain stem. This is what we suspected but now know that the Chemo will be the best chance I have at curing this. In the mean time he prescribed something to help with the discomfort. We dropped the prescription off on the way home and wouldn't you know it, my insurance company won't approve it without a doctor's authorization, which Walgreens faxed to Dr. Ruderman. I feel bad for the doctor's office that has to continually authorize the prescriptions they just wrote. Crazy!

I was able to enjoy the day resting as they instructed. I was very sleepy and napped for a few hours in the afternoon. I had already put dinner in the crock pot this morning so there wasn't anymore work to do. The kids entertained themselves and we shared our dinner with Grandma and Grandpa once David got home from work. Jimmie is still doing very well for just 2 weeks post op. We are blessed.

Lumbar Puncture AKA "Spinal Tap"

Another day, another procedure. I was told that I would be at the hospital for 4 to 6 hours and that I would need someone to drive me home but that I could be dropped off. Not knowing if family would be able to stay with me, I had David drop me off on his way to court at 8 AM and asked my Aunt Kay to come at noon to take me home. Everything fell into place perfectly.

This morning was the day of my Lumbar Puncture (LP) A.K.A. "Spinal Tap" and I am fine!!! That's right, believe it or not, I would take the LP, at this hospital with this doctor, over the 4 hour MRI any day!
They used a C-Arm, with an X-Ray devise which made this precise and painless. The only pain was the wasp like injection of numbing stuff in my back. Anyway, David dropped me off, went to court and decided to come back when court was over; which just so happened to be in time to spend several minutes with me before they took me back. He walked back with us, met the Doctor and was able to stay a bit during recovery. Aunt Kay arrived just in time to come to my side as David left. I was doing so well after the 40 minute procedure, that the hospital discharged me only 1 hour after the tap was over. Luckily, I have been instructed to rest for 24 hours, laying back as much as possible. Yea!

The main reason for this test (in my opinion) is for the study in Texas. It was not required by the specialist, Dr. McClain, in Houston for treatment just a request for their study. They want another LP after my 12 months of Chemo which I am more than happy to provide. Doctor #1 (Chowdhary) however, felt this was necessary to check if the hisiocytes are present in the spinal fluid. My main focus was making sure the hospital staff had the instructions for sending a test tube to Texas - I was not about to go through with it if they couldn't provide a sample for research. So, I asked every person I encountered about this and everyone there was so nice. Not once, did any of them tell me that I would have to freeze it and ship it myself (yes, this is what my original Oncologist told me - sure, I'll put it next to the Popsicles!). How absurd, I mean, who has ever had to ship out their own blood draws to labs? No one gave me a hard time and each one made sure the next person with me knew I wanted to make sure this happened. Even during the procedure, I heard them check that they had the one for Dr. McClain. Whew!

Now a little bit about the doctor that did the LP! He was awesome! I wish Dr. Hsaio could be my nuero-oncologist. I like him the best so far but he is not a contestant in my Dr. Dating Game! As David said, "He gets it!" When he first introduced himself to me, he asked if I knew why I was having the LP to begin with. When I said it was for LCH-CNS, he said, "I read your MRI from Saturday, you are a fascinating case." He is with the neurology department at Florida Hospital and he does LPs, Chemo treatment that enters the spine directly and reads MRI's and X-rays. I've never gotten to meet the doctor who read my MRI and wrote the report for it. This was so cool. I got to ask him his take on the whole situation - he looked at my scans again and we had a nice chat. His observations of the MRI from Saturday compared to the one in January is that "The lesions are definitely extensive, but the signal is not as intense as in January." He also added that he did see a progression compared to my 2005 Scan." The contrast die they inject for the MRI picks up some kind of activity, hence "Hyper-Intensive Activity in the Brain Stem." He asked if I have seen an improvement in my symptoms. It was then that I realized I haven't had any migraines in a while. My other symptoms have been the same for the last month though. So, I got to ask the million dollar question, "Knowing what you know about my case and seeing the lesions, would you go through a rough year of Chemo with the chance of stopping it?" He replied with confidence, "Absolutely!" He explained to me and David that the CNS is where your primitive functions are controlled, how you walk and breath, etc. This disease is so unpredictable, it could flare up at any time and cause all kinds of problems, if I have the chance to kick it into remission or cure it, I should go for it. I think I needed to hear this definitive assessment of my rare and interesting case and the options that lay before me. I guess I am still scarred from my original oncologist appointment.

Tune in Monday, June 21st for the adventures of Dr. Roto-Rooter (His real name is Ruderman) and Misty's endoscopy plus biopsy. Does the fun ever stop?

4 Hour MRI Today!

I have had many MRIs for my young age of 21 x 2 and thought I could handle the Brain, Spine and Lumbar MRI all in one day. I am not claustrophobic and I deserve rest time with no kids. They told me it would be a couple of hours with stronger magnets but if I haven't had problems in the past, I could do it all at once. I have to admit, it was not a good decision but, they also underestimated the time spent in the machine.

I entered the cold, sterile, tight quarters at 3 PM with the idea that I would take a nap. Why wouldn't I think this, I stayed up late last night playing Wii Mini Golf just so I would welcome a couple hours of being motionless. I thought this would be a good time to meditate and even plan out my classes next year. The MRI Tech said, "This first one is only 20 minutes, then I have to change the table, so save the nap for the 2 hour spinal pictures." So, the first 20 minutes was much like my routine brain MRIs I have had off and on since I was 20. I didn't have any problems with this series, and I even got a break to use the restroom after it was over, while she changed the table for the Spine MRI. Little did I know I would be here for another 3+ hours! In case you aren't familiar with the way the MRI works, there are different series or combinations of loud clanking sounds that could run anywhere from 20 seconds to 10 minutes at a time with a short 10 second break in between. While the magnets are clicking, you are supposed to stay perfectly still. The clanking can be sorta cool if you like percussion and you know I married a percussionist so, there you go. Sometimes it reminds me of a cool tribal dance and other times it sounds like a machine gun. I can feel the vibrations moving through me different ways and often try to imagine which way it is slicing my head. I forgot to mention, this machine is the strongest MRI Machine there is - they called it "3T". These more detailed photographs of my precious insides comes with a price and I don't mean my 20% co-pay. This machine has stronger magnets than other MRI machines, which means they are louder and to my surprise, they put off a lot of heat. As I lay there, as still as I could be, my throat started irritating me and I had to clear it. I tried real hard to fight it off but couldn't make it. I squeezed my little emergency ball and she took the blanket off me because she thought I was signaling her that I was warm. She had talked out this plan earlier, but I couldn't tell her it was something different and I knew the series had to run it's full cycle which I think was 4 minutes for this particular one. When it stopped, she let me cough and clear my throat. The next time I struggled, it was because my arms heated up and my neck muscles became so tense that I thought I lost circulation throughout my body. I held on best I could but had to move my arms around between clanks. After 2 more hours passed, she rolled me out to inject the contrast (which was much more pleasant than the IV I had at WP Hospital in January - where I could smell and taste the saline as it entered my veins) I took this opportunity to wiggle around, get my blood flowing again and cool off but she didn't want me to move that much. She said it would throw off the whole test. ugh... too late, I moved my long hair out from under me and that apparently re-positioned my neck. She would have to check the pictures at the end and re-take some of them. Back in I went. I kept trying to imagine that the heat was the nice warm heating pad I use to sooth muscle cramps...that didn't help. So, I switched to the image of hot water in my hot tub then the beach...but I realized it felt more like a microwave, cooking me from the inside out. "Come on Misty, you love the heat! This should feel good!" I was yelling in my head. I couldn't wait for this to be over.

Looking back, I realize that I managed to distract myself off and on with planning out ideas I have for school next year but it was interrupted by loud noises and body aches. I even think I dozed off in the very beginning which I think is one of the things that contributed to my needing to clear my throat, I am not really sure...I must have been wavering in and out of different states of consciousness. The noise is somehow hypnotic and I was trying so hard to sleep or meditate or plan video projects that, I couldn't really control my thoughts as well as I would have liked.

The MRI tech was curious about my diagnosis and could tell that I was more than willing to talk about it so, she asked me lots of questions as we were getting started. Then before she injected the contrast, she asked if the lesions can only be seen with contrast. I didn't know the correct answer to this but assumed she meant that she couldn't see them. She also asked me where they were. So I told her, "Mostly on the brain stem, pons and something that starts with an M. And a couple on my left frontal lobe." When the contrast portion of the MRI was over, and I was finally done, she asked me if I was having trouble with my right side, motor skills. I guess she saw the lesions. I told her about my right arm going numb in 2006 and not getting a proper diagnosis for the cause and she rolled her eyes and sighed, "Duh". She was funny. She also said that I needed to go home and have a Margarita for both of us because this long session was hard on her too and I didn't take as many breaks as most people. I didn't know I had the option. When you think about it, she couldn't take a break through all this either.

I think I will go have a Margarita now - after all, I promised her. David, "Do we have any Margarita mix?"

School is out - MRI tomorrow!

Whew! I finished my first year at Winter Park High School and I must say, "It was great!" I really do love this age group and I still love teaching TV. It is an added bonus that the school (Administration and Faculty) are terrific! Even though school is out for summer, I can't seem to stop thinking about next year. After getting through a whole year, I have a ton of new ideas from organization of my studio, set design, projects and our News Show. It is so nice to really love what you do.

Can you believe my boys will be in 8th grade next year? And my baby girl will be in 5th!!! Ahhh! How do they keep getting older while I stay so young? ( tee-hee ) Justin got braces the day after school was out. All three kids are happy to be out for summer and so far, don't mind helping me in my classrooms and studio. I have been blessed with lots of help this week. My Aunt Kay and Uncle Jim, along with my kids and one student, helped us build shelves and organize my storage room. This was HUGE!!! My cousin Loren's boyfriend Josh, moved all the big heavy furniture around as I kept changing my mind on how I wanted it arranged. He was awesome!!! I will go in a couple of days next week to finish organizing stuff and cleaning up for the summer. This extra effort now will really pay off in the fall when school starts back.

Since last week, I have gotten a call back from the MD Anderson Cancer Center and they have a Neuro-Oncologist who has reviewed my medical records, including the letter from Dr. McClain in Texas (with the treatment plan) and he is willing to see me. Unfortunately, he is going out of town and my appointment isn't until July 14th. David and I decided that we want to be sure we are happy with the treatment facility since I will be going for a year and we don't want to start the Chemo with the Florida Hospital Doctor until we have had a chance to check out the famous MD Anderson first. In the meantime, I am getting an MRI of the brain and spine Saturday, June 12th and I have a Lumbar Puncture scheduled for June 17th. The following week is an endoscopy and biopsy. Don't worry...they still think this is slow progressing, I am in the mild category and let's not forget Dr. McClain said we have caught this early. I am actually, doing OK. I get used to my disorientedness (if you will let me make up that word) and find ways to compensate for my right hand fine motor skills deficit. It is most obvious when I start to rush. I fumble and drop everything. I am also having more trouble opening things but I just ask someone else to get it for me and that seems to go over just fine.

Finally, Jimmie came home from the hospital Tuesday, June 8th and is doing remarkably well. We go over once everyday and are trying to help out where we can. He wanted to eat dinner at the table with us tonight and so we did! Heart surgery sure has improved since my Uncle Jim had his 17 years ago!

Interview - Doctor #1

I had imagined this process of finding a new oncologist moving along a bit quicker but we have had some things come up that we didn't count on. Since my last post about the failed appointment with my local oncologist (one week ago), my Father-in-law had heart trouble and was admitted into the hospital late Saturday night. At first, we thought he'd get his medicine adjusted and be sent home. But then, his defibrillator went off in the hospital and a team of heart doctors decided that he needed open heart surgery. His other 2 sons flew into town and he had a successful quadruple bypass Thursday. I was just at the hospital visiting him and must say he is doing great for just 1 day of recovery.

Wednesday, I had an appointment with Doctor #1, the Neuro-Oncologist at Florida Hospital. (Thank you Barb for watching the kids) Unfortunately, none of the people that attended my appointment last week were available for this one. So, I asked a friend of mine to go with me, she is a cancer survivor who has lots of experience with this. As an added bonus, my brother-in-law, who is a doctor was able to walk over to my appointment, since it was at the same hospital my father-in-law was in. After speaking with Doctor #1 in person, I learned that he likes walks on the beach and picnics in the sand....OK, actually he claims to have had 1 and a half Histiocytosis patients not 2. I wanted to ask how he had half a patient but never had the chance. I will save that for the next time I see him. Over all, his bedside manner was very good and he seemed knowledgeable of Histiocytosis but has not done this particular treatment. He made it very clear that this is his passion and he would give me 100 percent and pointed out that they are in the top 5 in the nation for Neuro-oncology.

I am still looking forward to meeting Doctor #2 & 3 at MD Anderson. They said they have received my medical records and I am "under review". I get the impression that someone will call to set an appointment when the doctors decide who I should see. I left a message that I wanted someone who is willing to follow Dr. McClain's Treatment Protocol and that I was not looking for a second opinion or alternative treatment. In the mean time, Dr #1's office is setting up an MRI of my brain and spine. I will see a GI on Monday for a consult about my esophagus problems and a lumbar puncture should follow soon after.

I am already getting tired of all these appointments but we have so much we're trying juggle with the end of school and now Jimmie's health, its just been crazy. The kids will be done with school June 9th and I will be done after June 11th. So, it is winding down and this timing is actually fine. In fact, I like that I don't feel rushed and can make sure I am happy with the doctor and the facility that will do the treatment. Physically, I have been feeling more 'disoriented' and 'cloudy', if that makes since. Like most women and moms, I used to be able to multi-task all day long. Now I find it helps if I try to focus on one thing at a time and not rush (more like a man - just kidding guys). The hardest part is admitting to myself when I am stuck. This is what I call the moments when I stop in the middle of a task because I can't think about what I am supposed to be doing. The good thing about not feeling so good right now is that I welcome the tough road ahead more than I would if I was feeling fine.