Starting in approximately January 2005, my dad started to feel tired and never fully rested. Throughout this time his wife, Sue, noticed he became forgetful, had trouble concentrating, and would often forget where his reading glasses were. As the time went by his driving ability suffered (scraped a pole while parking) and had difficulty writing emails due to spelling errors. He also experienced some vision problems and occasionally experienced weakness in arms/legs. It is important to mention that although he was my business partner and we talked almost daily, these symptoms were not known to me. He occasionally mentioned not feeling well but no more then that.
In late June my dad and Sue took a week vacation to Hawaii and while there, I remember talking to him and he sounded like he had one too many frozen drinks. Upon his return, his language skills were so diminished that he had problems finishing sentences. It has been theorized that the effect of the long flight to and from Hawaii caused an increase in his symptoms but nobody knows for sure. On Tuesday July 5th my dad went to see his doctor who immediately asked for an MRI of the brain. I went to this doctor visit with him and afterwards we went to my house to see my daughter, his first grandchild, and I will never forget it. He could not finish sentences and had problems remembering basic things. The next day his MRI revealed a brain tumor that was first diagnosed as a Glioblastoma (GBM) by his doctor. When I heard the news (Sue called me at home) I broke down crying and could barely stand upright. From that point the clock had started in many ways. On Thursday he had a biopsy and here is something very important to note: DO NOT TAKE THE Steroid BEFORE THE BIOPSY IS CONDUCTED. This type of cancer reacts immediately to steroids so the biopsy can be compromised. Hopefully your doctor will know this but just in case. After the biopsy, my dad's doctor immediately administered a steroid (Decadron) that help fight the brain swelling and in no time, my dad was back to normal.
After researching I learned that it is common for this type of cancer to begin somewhere else and move on to the chest. On Friday we got our first bit of good news...all the x-rays were negative...we were about to battle this cancer in only one area. He was released from the hospital late that day and he and Sue spent some quiet time together. My family held an impromptu "fight party" for my dad at his home on Saturday with many family, friends and members of his church in attendance. I have often viewed the video tapes of this party and after watching/listening to my dad, you would have a hard time believing he had even a cold. Over these first days my brother and I spent most of our time on the web researching all we could and trying to set up appointments for second and third opinions...including one from M D Anderson.
The following Monday we were all headed to a local doctor for a second opinion when M D Anderson called to say that they could not schedule a visit because the slides of the biopsy were not being released. From my car I reached the responsible person at the hospital who had performed the biopsy and he then broke the news: he was changing my dad's diagnosis to CNS Lymphoma. I remember asking him what that meant and he said that was good news for my dad. At the appointment for the second opinion, I mentioned the new diagnosis and the doctor said, "I can't treat you but it is indeed great news." We left his office, went to my house and enjoyed a beer and celebrated the 'good news'.
Once the slides were released, we were able to schedule an appointment with MD Anderson for the following week. This institution understands customer service and our experience there was nothing but excellent. Dr. Groves was our contact and he basically said that with the prescribed chemo regime, my dad's Lymphoma would likely go into remission although at some point it would return. In total we were there for less than 2 hours. While waiting for our valet to bring us our car, we all decided to celebrate the good news by driving to New Orleans for some good food and libations.
Below are some sites that helped me when we learned of the diagnosis...I hope they help you too:
It had been an absolutely crazy and emotional 10 days but with my dad's prospects completely changed with the new diagnosis, we headed off to the Big Easy. I remember eating Po Boy's and listening to Zydaco with my dad, Sue and my brother Derek all the while ready to begin the treatment and battle this disease to the end. It was a great time I will always remember.
While in NOLA, I got in touch with Dr. Lisa DeAngelis of Sloan-Kittering. She is considered the top person dealing with this disease. After giving her all the info we had and the chemo drug mix suggested by MD Anderson, she concluded we had good advice and signed off on the regime. I got her name from an article http://jco.ascopubs.org/cgi/content/full/21/24/4471 and found her and her office extremely helpful.