Going To Duke!

Hello friends and family! A lot has happened since my last post so here it goes. First of all, because of my association with the Tug McGraw Foundation I was contacted by none other than Dr. Henry Friedman from Duke University. He called me the Monday after my M.R.I. around 10:00pm! My caller i.d. showed the number as Duke Hospital so the man was still working that late at night! Talk about a workaholic! Our conversation was very short and to the point. He commented that I had a "...beautiful resection..." referring to my surgery. He then asked who my Oncologist was, whom he knew. (Dr. Nick) He then stated the exact protocol that Dr. Nick had already prescribed and said that he did things a little bit differently. (Dr. Nick has prescribed Temodar only and apparently Dr. Friedman likes to use what is called a 'cocktail', a mixture of Temodar with some other chemo and auto-immune drugs thrown in.) We then talked very briefly about my medical past and current situation. Dr. Friedman then said it was time for me to decide if I wanted to be a patient of his. He asked me to contact his office when I had made my decision. We were off the phone before I really knew what had just happened. I consulted Leah very quickly and called Dr. Friedman back directly. He answered the phone and I told him I wanted to be a patient of his. He answered, "Very well. I will set it up. Goodnight." That was it. Wow! I had just become a patient of the Preston Robert Tisch Brain Tumor Center at Duke.

In case you don't know how significant this is, I will tell you. First of all, Duke is considered the top brain tumor center in the world. When I first received my diagnosis I was told there were three centers that were the best in this particular field. Sloan Kettering in New York, M.D. Anderson in Houston and Duke in Durham. Of these three Duke is considered number one. Leah and I talked with Dr. Nick about this before I even started my initial round of chemo and radiation. The problem is that none of these centers will see you until you complete what is considered the, "Standard Quality of Care." (This is the first 6 weeks of chemo combined with radiation. Apparently every center across the U.S. treats this tumor in a very similar fashion for the first phase.) After the 42 day program you get your M.R.I. and send it for review to the program or programs you want to become a part of. If you are contacted and accepted, you get to go. I know for Duke the criteria was very specific. The tumor has to be a primary brain tumor, no metastatic brain tumors. (Sorry, Lance. You wouldn't be allowed. For those of you who don't know, Lance Armstrong's tumor was not a primary brain tumor. His tumor came from somewhere else in his body.) They also want operative reports, discharge summaries from the hospital, chemotherapy treatment summaries, radiation therapy summaries and my last 2 or 3 lab results! But wait, that is not all! They also have to confirm my pathology! Apparently this entails contacting OncoTech out in California who has my frozen section from the surgery and obtaining slides of my tumor. And, lastly, they want my last two M.R.I.'s for review. Whew! What a list! The good news is we were accepted and have appointments scheduled for December 10 and 11. The two day appointment looks very thorough. We will spend about 3-4 hours each day meeting with Neuro-Oncologists, Physician Assistants, Nurses, Social Workers, Child Life Specialists and any other specialist who may be able to assist Leah and my family.

Initially I was worried about confronting Dr. Nick with the news of a second opinion. I just met with him yesterday and he was wonderful. He informed me that there were only a few centers across the U.S. who's opinion he respected and that Duke and Dr. Friedman were one of those. He went on to say that Duke has a lot to offer that Florida Hospital does not as far as experimental treatments go. Dr. Nick feels it is a good idea to keep Duke in our back pockets should some of the programs they offer become necessary. As upsetting as that sounds, it is the unfortunate truth. Just because I had a clean M.R.I. does not mean this battle is over. I am fighting a war with this cancer that is going to have many individual battles over the course of the next few years. The fact that my new chemo regimen is prescribed for 2 years is indicative of how serious this is. As I have said before, we are not out of the woods yet but we have found the path that can lead us there.

Dr. Nick does want to meet with me as soon as I get back so we can discuss some of the treatment options that Dr. Friedman recommends. He plans on remaining my doctor which is exactly what I was hoping for. I think Dr. Nick is wonderful and incredibly smart. I value his opinion very much and still remember that night in the hospital when he actively came in and sought me out as his patient. Even in my morphine haze I still remember that night, although I also recall drifting off to sleep as he was explaining to me the nature of my condition.

Now on to other news. I just completed my first dose of my second round of chemotherapy. I received the Temodar on Thursday of last week ironically the same day that I began to feel the symptoms of a bad head cold. Luckily Dr. Nick took mercy on me and prescribed me a Z-Pack which I began the same day as the chemo. I can't tell you how this second round affected me because I felt the cold so badly. I was sleeping all the time! Where I normally get up between 5:00 and 6:00am I was sleeping until 9:30am! I felt like a slug! During the second phase of my chemo the dosage has been bumped from 165mg to 445mg! I took my last dose on Monday night so the 23 day wait period began on Tuesday. I will start my next round of chemo on November 12th. Sometime after November 17th I will be scheduled for my next M.R.I. During that month, we will be taking a Disney cruise to focus some time with the children. I am assuming that I will have the M.R.I. sometime after I get back. Part of the new secondary treatment is a M.R.I. after every second cycle. Do y'all have any idea how uncomfortable one of those machines is to get stuck in for a half hour every two months? Now I know what a sardine feels like getting stuffed inside of that can. Not only that, but the machine is VERY noisy during the exam. Also, technicians expect you to be absolutely still during the test! Very frustrating!

Our family continues to do well. I am very excited to see the U.S.F. bulls ranked by the BCS standings as number two in the nation. This is where Leah and I met and fell in love. It is very ironic to me that this cancer has changed my life as much as it has. A lot of people think that what I have is terrible and they are right. This cancer could ultimately take my life. But what it has done for me since my diagnosis I would not trade for anything. I have a whole new perspective on life, God, family and happiness. My priorities are completely different from what they used to be. Quality time with those I love means more to me now than ever before. My relationship with God means more to me now than ever before. I can not wait to get out and see the world with my family and make memories that will last a lifetime. Thank all of you who have been so kind through all of this. Your kindness and understanding have been appreciated. God bless all of you.

Love,

Dan and Leah