Adjusting

Monday, September 22, 2008
Subject: The future of Lloyd

Hello, everybody! Having had my (very successful) surgery, I will primarily see a neuro-oncologist for the further treatment of Lloyd. I am now officially a patient at the Kimmel Cancer Center at Johns Hopkins, and having met with Dr. Grossman we now understand more about Lloyd and how to proceed with him. Lloyd, unfortunately, is here for good. He is not curable. It is impossible (Dr. Grossman's words) to remove 100% of these kinds of tumors. In fact, as I've mentioned before, I am extremely lucky that my tumor was operable at all. Many astrocytomas are not.

Lloyd is a tumor which is a slow-growing cancer. We have no way of knowing for certain yet what speed he is growing at, though everything so far tells us that he is slow-growing. We discussed my treatment options with the Dr. Grossman—this kind of tumor has three: chemo, radiation, and close observation. In my case, chemo does not make sense. My cancer cells aren't developing fast enough that the chemo would disrupt them the way it is supposed to. Radiation would slow the growth of my tumor, but it would also keep us from being able to learn how fast it grows on its own. Also, research has shown pretty conclusively that patients who choose radiation have the same survival rate as those who choose close observation.

So, close observation it is. I'll have an MRI every 2 months and we will see how fast Lloyd is growing and we will choose what to do next when he gets big enough. At the moment, I've had about 95% of the tumor removed, so hopefully it will take a while. We were told that it is extremely unlikely with this disease that multiple tumors develop—Lloyd should be the only tumor I will have to worry about, and he chose to grow in a part of my brain that is operable. My hope is that every time he gets big enough to cause worry we can perform surgery again. Incidentally—another piece of good news is that this kind of cancer does not spread into any other areas of the body.

The hardest part about this diagnosis is the incredible uncertainty that we have to learn to live with for the rest of my life. Although my situation, compared to most people who develop brain tumors, is pretty good, it is still hard to adjust to the fact that I have incurable brain cancer. Also, these tumors change. It seems like the usual path is that if they start as a level 2, at some point they change into the worse kinds. Now, this could be years from now, or it could be at any time. Every 2-month MRI could bring bad news. Chances are that mine is going to give me a decade or two (or more!) before it gives me additional trouble, but the fact is that it could change at any time with no warning. And that is a difficult way to learn to live. But we will, and we will make the most of whatever time we have—be it the 15+ years I believe I can expect, or be it some lesser amount.

In the meantime, I am feeling better and better, and my house is cleaner and more organized that I had ever imagined it could be. Apparently I remain a "high seizure risk," so Mark is still staying home with me. The longer I go without having another seizure the more my risk drops. Maryland’s law (some say far too lenient) is that you must wait 3 months after having a seizure before you can go through the process of reinstating your license. This also involves the approval of a state medical board, so who really knows when I may be able to drive again. I don't think Mark had any idea how often the magic fairy that stocks our house with food and supplies had to travel to Wal-Mart and the grocery store.

I am to heal from my brain surgery for a full two months, and I will see Dr. Lim at the end of that time for a check-up (late October). Interestingly, I can't feel my scalp above the top line of the incision—it is completely numb almost to the top of my head. My scar is not NEARLY as cool without the staples and my hair is growing in and covering it. On the plus side, I've taken to blaming Lloyd if I say or do anything dumb. For example: I recently laughed at a Red Bull commercial. Perfect opportunity to blame Lloyd.

I'm looking forward to getting back to my "normal" life, and am hoping to start back to work around the end of October. I am still not quite myself (largely due to the pain medicine I still need), and my body still feels like it belongs to someone else—I definitely have a lot of healing yet to do. But soon I will rejoin the world, and I look forward to seeing all of you. Thank you for keeping me connected, as well as for all of the prayers and good wishes. I think I still need them :)

Love, -Kristina (and Mark)