In June/July of 2002, I did 6 weeks of radiation to fight my tumor. I found out recently that I was administered 6,300 rads (not sure exactly what that means) and apparently that is a lot. At the time, and for roughly 12 years after, I was told that I had been given as much radiation as my body could handle for the rest of my life. It would never again be a treatment option for me.
Those doctors did not expect me to live another 13 years. On July 21st, I started 10 days of radiation and tomorrow is my last day. My radiation doctor at Kaiser, Dr Nguyen, is treating me with 3000 rads of a more updated version of radiation that would be the equivalent of 4000 rads of the kind I was given in 2002, so about 2/3 of the dose I first received.
So far, so good :) I'm not feeling much noticeable fatigue yet, but I can expect to in the very near future. Luckily, fatigue & hair loss are the only serious side effects I should expect. Otherwise, I've had a few minor headaches, but nothing a couple Tylenol can't handle.
I'm very lucky that my doctor has agreed to treat me. It is industry standard to not re-radiate, but my doctor warned me of the risks and my family and I agreed that the potential benefits outweigh the possibly serious risks. Dr Nguyen feels confident that she made a plan that will avoid interfering with my vision center & a couple other critical areas that control my breathing and other life-sustaining functions. There is a chance though that I may experience more weakness in my left arm and possibly other unexpected effects.
The reality is, though, that I have a brain tumor. Whether it is radiation that causes it a little sooner, or the tumor itself just growing unchecked, I am going to experience physical and possibly cognitive issues with time. I came to terms with this a long time ago. I would rather be aggressive and hopefully give me a few more years while they're coming up with some really promising new treatments for cancer, than just sitting back and waiting for it to kill me without putting up a fight. I may get some scars in my various battles, but I feel confident that I at least have a shot at eventually winning the war.
The reason that doing radiation right now is so important was explained to me by my neurologist like this...
When the doctors thought I had a glioblastoma, you could think of it like Lake Tahoe: huge (aggressive and fast growing) but with a well-defined border. The tumor that I actually have, an oligodendroglioma, is more like Lake Shasta: shallow (slow growing) but with a bunch of little fingers that go off in all directions (in my brain). Those little fingers are impossible to remove through surgery, so the hope is that radiating the areas surrounding my brain will get a bunch of those fingers.
I think that a lot of people who have been lucky enough to not have had to deal with cancer treatments are often not sure exactly what is meant by chemo and radiation, so here is a quick Cancer Treatment 101:
Chemotherapy: Cancer treatment using chemicals, usually administered through an IV or orally by pills. Because it gets into your bloodstream, it goes throughout your body. However, different types of chemo are more or less effective at getting to and treating different parts of the body. The types of chemo that cause hair loss and nausea do so because they are made to attack rapidly dividing cells, such as hair cells (hair loss), those that line your digestive tract (nausea) and cancer cells. Luckily, most of the chemo I've done was oral and I had very few side effects. I didn't lose my hair from it and I could tolerate any sickness by taking an anti nausea medication. Unfortunately, in treating brain tumors, there is what is known as the "blood/brain barrier" which is a defense system in our bodies to help protect the brain. However, it also makes chemotherapy administered through the blood, largely ineffective on brain tumors. I just happened to get a type of tumor that responds to chemo better than many types. In a way, I guess you could make an argument that I've been fortunate.
Radiation: You can think of radiation more like an Xray. You can't see it or feel it, but it is somehow attacking cancer cells, but also healthy normal cells that are in its path. I picture it like a laser beam out of a comic book, frying my tumor and leaving behind an empty crater where it used to be :) Radiation oncologists have to make a plan to radiate as much of the tumor as possible while avoiding other critical, healthy areas. To make sure that only the exact area that Dr. Nguyen determined is safe to receive radiation for each of my 10 treatments, it is critical that my head is in exactly the same position each time. My wonderful technicians ensured this by creating a mask that attaches to the table I'm laying on. Prior to treatment, they took a plastic mesh material that becomes pliable when wet and stretched it down over my face, forming it to my nose, chin and eye sockets, then waited for it to dry and harden again. Thank goodness I'm not claustrophobic or I'd have some serious issues!Check out these pictures of my medieval torture device...
They use lasers to line up targets on the mask to make sure that everything is in place every time. The whole process only takes about 10 minutes, from walking in the room to walking out, and I just close my eyes and hear that machine in the background moving around my head as well as whatever music they're playing that day. My first day it was a Christmas song, then a few days of elevator music, then Friday it was 80's soft rock :) I have to give a shout out to my techs because they are so awesome and keep me smiling and laughing! I'm definitely going to miss seeing them every day!
