Posted on 09/16/2001 1:39:56 PM PDT by MrConfettiMan
Hi, everybody. It's been about 10 days since I last updated everybody on FR about my condition (a brain tumor was discovered four weeks ago and rather quickly led to surgery several days later) and now that I have some new information I thought another post was due.
When last I left you it was Wednesday, September 5th, and my doctor told me it seemed better than likely the final pathology report would show a grade 2 astrocytoma, a low grade malignant tumor. The following day I went to my neurosurgeon's office to get the remaining staples removed from my head. Afterwards, I swung by my office to have lunch with everybody and to prepare for my return to work on Monday. On Friday, I made an appointment with the radiation oncologist recommended by my doctor and was lucky enough to get one on Tuesday.
Saturday, my wife and I went out for dinner. I'd been couped up in the house for too long and my wife deserved a break from doing all the cooking. We stopped at the local Barnes & Noble beforehand and browsed the shelves of the Health section. The books on brain tumors were not to be found anywhere (that's what happens when only 18,000 people a year in this country will be diagnosed with one) but the books on general cancer information were numerous. I ended up purchasing The Cancer Patient's Workbook by Joanie Willis (ISBN 0-7894-6782-8). It's a fountain of information regarding cancer and helps one keep track of all the data from one's doctors in one place. (Sunday, I went to amazon and searched for books on brain tumors. I special ordered two written by survivors.)
Monday, I spent most of the day at work surfing the 'net for information about brain tumors (and not actually working). As a result of my research and info in the aforementioned workbook, I ended up calling several cancer hotlines (US Gov't Cancer Information Service: 800-4-CANCER; Cancer Hot Line: 800-433-0464...) and requesting various documents on cancer and brain tumors that were available for the asking. Upon hearing the type of cancer I'd been diagnosed with, one of the hotline volunteers told me she had lots of survivors with my type of cancer on her list and would I like one to call me. I told her I wasn't quite ready for that yet and she said she understood. (A couple of days later I called back and told them I was ready to get a call from a survivor.)
Tuesday morning I arrived at work at 8:45AM and immediately logged on to FR. I quickly noticed one of the first threads in "Breaking News" that a plane had crashed into one of the World Trade Center towers. At the time, it was assumed to be an accident and there was even some discussion as to the type of plane. By 9:00AM, it was clear it was no accident. My thoughts soon turned to my brother who had told me the night before he was flying down to Richmond in the morning. I knew he was likely to be leaving from Newark and I was anxious to find out whether he was alright. At about 9:10AM, I called his cell phone and left a message. Within 15 minutes he returned my call and asked what was going on. Needless to say, he was shocked. They ended up renting a car, left Richmond for the drive back to NJ around noon and got home around 6PM.
That afternoon, my wife and I met with the radiation oncologist. When we left, about two and a half hours later, we were extremely pleased with and confident in his abilities. He's young (about 40), intelligent and compassionate. He spent well over an hour speaking to us. We'd brought a hand-held tape recorder with us so we wouldn't miss a word while he was explaining things to us and answering our questions. He had the second opinion on the pathology report from the doctor at Johns Hopkins and it confirmed a well differentiated, WHO (World Health Organization) grade II, astrocytoma. It was official. I have cancer.
He told us we should definitely get a second opinion on both the biopsy results and the treatment options, and he said he'd help us set those up if we wanted. He listed all the items in my case that would lean towards a more favorable prognosis (the only negative item was my sex - female patients tend to respond better to my type of cancer). He told us we weren't making any decisions today but thought there were two primary options for treatment: 1) the wait-and-see approach; get an MRI every 4 months and if any change in the tumor is noted (he didn't quantify the change and I didn't think to ask but will next time), immediately begin radiation treatment; and, 2) begin radiation treatment immediately. The main purpose of the wait-and-see approach is to delay the long term side effects of radiation treatment as long as possible (~5 years down the road, ~20% experience a ~10% decrease in cognitive ability). We didn't ask what his recommendation would be, but we will, and he didn't tell us.
He told me to schedule a post-op MRI so they could do a comparison with my pre-op MRI and determine how much of the tumor the neurosurgeon was able to remove. The neurosurgeons told us they got 90-95% (they can almost never get 100% when they're working in the brain) after the surgery, but the MRI would settle the question once and for all. If it turns out they got 90-95%, there's no need to make any immediate decisions on treatment options. If they were wrong on how much of the tumor they removed (and once again, he didn't quantify it and I didn't think to ask but will next time), then his recommendation will be to start radiation therapy immediately.
Well, I went to get my post-op MRI this past Thursday, managed to hunt down my pre-op MRI on Friday morning and then received a phone call from the radiation oncologist Friday afternoon. He told me he and the radiologist were looking at the MRI images when both my regular doctor and an associate of my neurosurgeon unexpectedly walked in. All four doctors were in agreement that the results were inconclusive and I needed to wait four more weeks to finish healing from my brain surgery. As he put it, the post-op MRI basically showed a large surgical defect where they removed the tumor and until it finished healing, they couldn't do a reasonable comparison. In four weeks, after I get another MRI, they'll compare all three sets of MRI images and then we'll know more.
Ladies and gentlemen, I feel as if I've been given a four week vacation from worrying about my cancer. I am at peace, and yesterday, I was more like my pre-cancer self then at any time since my diagnosis four weeks ago. I can't explain it. I imagine some of you were thinking, "Oh, my gosh. That poor guy. He has to wait another four weeks before knowing more and taking the next step." However, nothing could be further from the truth. Sure, I'll still spend a couple / three hours each day reading about cancer and brain tumors, after all, knowledge is power. And I'll still get momentarily scared out of my wits thinking about what the future holds for me, but...well, like I said, I can't explain it. I am at peace.
Last night, I got a call from the previously mentioned cancer survivor hotline volunteer. She was diagnosed when she was 30 years old with a grade III astrocytoma, a more malignant form of the cancer I have. She had surgery, radiation treatment and was sent home by her doctors with hospice information because they told her she wasn't going to make it. Twelve years laters (yeah, that's right, 12), she's calling me up on the phone and giving me a pep talk!
I'm currently reading Gene Kranz's book on his years as a NASA flight director during the Mercury, Gemini and Apollo missions. The title of his book has become my motto during this challenge, Failure Is Not An Option. :) Friends, please continue to keep me and my family in your thoughts and prayers. I'll do the same for you. Your support has meant much to me during this difficult time.
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