Following my brain tumor diagnosis, I thought that doctors would be THE source of THE most expert advice regarding "what to do next." However, I quickly learned that people who have "been there and done that" are often the most sage of all.
Soon after my diagnosis, I sent e-mails to my network of family and friends. That message got sent around and generated many messages in return. These are what I consider the "Top 3" messages that I got from my network of family and friends about how to approach brain cancer (and all major illnesses).
None of these friends had actual brain cancer. However, they brought terrific, relevant insight because of the battles they have faced...and continue to face. My parents, in particular, re-read the message from Grant Davis dozens of times for guidance.
If I could have had these perspectives in my back pocket on Day #1 of my diagnosis, I would have been much better for having this knowledge. By sharing now (with approval from all these friends), I hope this helps other people who have major illnesses, including brain cancer patients. Knowledge = power.
Grant Davis: A music teacher from the 1984 Garfield Cadets Drum & Bugle Corps and a cancer survivor.
I have read your website, including your posts on your medical condition and perhaps more telling, your journal. Perhaps it shouldn't be surprising that we all go through many of the same thoughts when faced with a serious illness. I remember the paralyzing terror that gripped me when I figured out I had cancer. If it's any consolation, the fear is the worst part. Once you learn to deal with that, you can handle the rest and you WILL get your life back.
I am going to get right to the point and tell you what I think is important for you to know.
1.) First of all, your astrocytoma is believed to be low-grade, which means that you are at WHO (World Health Organization) Stage 1 or Stage 2, and you have some time to formulate your strategy for fighting your disease. While time is a concern, please do yourself the service to take the time you need to become informed about your illness, the treatments, the prognosis and most important, the course you choose for yourself (you WILL have choices). In the end, it will not be a physician, or even the most respected specialist who will decide how you will fight your disease; it will be you. So give yourself the chance to become the person who will decide what happens. You will be surprised at how much you can learn in a short time. A few months ago, I got to thumb through my oncologist's chart and I looked at his notes from my first visit back in 2002. After describing my appearance and condition, he wrote, "Mr. Davis is VERY well-informed." Even at diagnosis I had already learned more about lymphoma than all of his other patients.
2.) Learn about your disease. Go online and start looking for resources that provide information on what you have. You will not be disappointed with the depth and breadth of information available for the taking. Everything you want to know you will be able to find out online. Learn about the natural history of your disease, its treatments, which physicians and medical centers specialize in your particular tumor, what is happening in clinical and pre-clinical research relevant to your illness. Wade into some of the clinical literature and start figuring out what it means. It may seem daunting at first, but you will soon begin to make sense of it. You will become familiar with the many aspects your illness.
3.) Find the online communities that deal with your illness. Some are there for support, and others provide information. Subscribe to their email lists. Read their forums. You will quickly find the resident experts who have been, for years, doing what you have just begun to do. Tap into their expertise and experience to accelerate your own education. Use them as a bridge between the technical medical literature and your lay understanding. They will direct your research. They will explain the incomprehensible. They will cut through the hype and the hyperbole, separate fact from fiction, and help you to understand the "state of the art" in diagnosis and treatment for your disease. You will begin to feel less like a victim or a passenger, and more like an expert. It won't take very long.
4.) If you are not already in decent physical shape, and if your condition does not preclude it, adopt an exercise regimen that will improve your strength and endurance. You will learn that in the world of survival statistics, physical condition often determines which side of the curve you occupy. Exercise is also a terrific stress reducer.
5.) Do not be afraid to get second and third opinions before embarking on a treatment plan. Do not be afraid to travel to see someone you think might be useful. In spite of the excellent clinicians you have visited, they are only human. They have biases. They disagree all the time. You have already begun to see this with regard to various opinions on whether you should have surgery. (Just remember that they will almost never contradict each other in front of you). Keep an open, critical mind about what you are told. You will discover that surgeons most often recommend surgery, radiation oncologists most often recommend radiation therapy, and clinical oncologists are partial to chemo. Do not deify these people. Remember, in the end, they will only suggest. You will decide. Take control of the process. The more you learn, the more comfortable you will become in this role. Do not be afraid to ask them questions. Do be afraid to challenge them. Do not hesitate to make them explain something if you do not understand.
6.) Get a copy of every report, opinion, lab, etc. that is performed on you (I scan mine and keep them in TIFF files). This will help you to stay on top of your medical history and make you feel in control of the process. If anyone ever has a question about what was said about an MRI or CT, or what opinion was given at a consultation, you will have it at your fingertips. You are in control.
7.) Educate yourself in the current research directed at your disease and the clinical trials that are happening. Learn about the biotech firms and research institutions and individual researchers working in the space. You may not know it yet, but cancer research is on a juggernaut toward much more effective, less toxic therapies, and dare I say, even cures for many kinds of cancer that are currently incurable. Given the relatively indolent course of your disease, you may very well live to benefit from the fruits of current research. Find out what is in the pipeline.
8.) Learn about the prognostic statistics thrown around so freely by the medical community and the press. Develop a deeper understanding for what they mean. I noticed in one of your entries you posted the 5 year survival figure. Before you get too cozy with that number, I highly recommend you read, right now, Stephen Jay Gould's excellent essay "The Median Isn't The Message."
http://www.cancerguide.org/median_not_msg.html
As you can probably tell, educating myself and taking control over the course of my treatment have been tremendously empowering to me. I hope you find some of this helpful. Live Strong.
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