Full Bloom

Alright, I'm a day late. Those of you who are checking in regularly are probably incredibly annoyed that I have not updated since Bloomington. I've heard from several of you who were just curious about the drive. Was it scenic? Are the flowers in bloom? Let me just clear something up before we get down to the nitty-gritty of Bloomington: While visions of daffodils and aphids and walking barefoot in the grass may take your breath away, do not attempt to convince me that it would be lovely to drive to Bloomington this time of year. When I close my eyes and conjure up fatasies of blooms, we're talking about Bloomingdales. Until 37N is lined solely with designer boutiques and haute couture, I intend to stay bitter about the drive. Now that we've gotten that out of the way.....

My good friend Nicki (Ms. Homo to some of you. Nope, not a joke to those of you who don't know her. Furthermore, she's pregnant and desperately seeking names that will not result in lifelong torment for her child. I have a sneaking suspicion that some of you who are reading this still specialize in re-configuring people's names "all in good fun." Maybe we can all brainstorm this one together?) picked me up around 8:00, and we hit the road. We arrived in Bloomington just in time. MPRI was easy to find. In fact, it's basically across the street from Assembly Hall. It is definitely not your typical doctor's office. Rather, it is more like a billion-dollar scientific facility.

Dr. Thornton was actually late for our consultation because he underwent an emergency root canal earlier in the morning. His nurse gave us a tour that made me feel like I had stepped into the Discovery Channel. Anyway, Dr. Thornton finally arrived, and Nicki and I began an hour-long lesson in the complete history of protons. I'm pretty sure she regrets taking the day off.

Anyway, much of what we learned was not new information. Dr. Thornton concurs with my diagnosis, but he is also securing the actual sample taken from my biopsy to get a second opinion. He believes this tumor has been developing for 10 full years and commented that I've basically wasted all the money I've spent over the last decade trying to combat my allergy/sinus/headache problems.

While Dr. Thornton agrees that this is a tough cancer because it is so unpredictable, it has some traits that will probably help us in the long run. For example, a typical cancer might double in size over the course of two days. Adenoid Cycstic tumors tend to double in size about every year. This is the reason he feels pretty confident that it has not metastasized. In fact, he basically told me that the PET Scan was a waste of my money (Don't worry....we're doing at noon today anyway. How can you put a price on peace of mind? Furthermore, if Anthem is going to screw me out of $3,100 in out-of-pocket expenses, they're definitely paying for every single dang thing that I might possibly need over the course of the next 6 months. Perhaps I'll re-think this in January). It will take about two days to get the results of the PET. So please don't start calling me at 3:00 today asking about the results :)

The two other specialists who reviewed my case were quite concerned about the size and location of my tumor. Dr. Thornton said mine is a "cake walk" compared to some that he has seen. It is lower rather than higher (which is a good thing) and approximately 5 full mm from my brain stem. His ultimate goal is to hit the thing hard with protons and avoid all other critical systems. With normal radiation this can be a problem. Protons can be shaped and molded and directed within 1mm of accuracy.

One of the absolute most interesting things that we learned about Adenoid Cystic Carcinoma is that its origin is virtually impossible to explain scientifically. It is not connected to genetics, environment, or personal habits. In fact, the one thing they have learned about it is that it is directly linked to a protein that the brain produces in conjunction with the immune system and mood. Here is where it gets really crazy. There is actual scientific evidence that suggests that a positive attitude and optimism can phsycially shrink the tumor. Dr. Thornton even wants me to keep pictures of my MRI on the wall and visualize it away (I'm sure glad I'm a part of Coach Rost's volleyball program. I'm a pro at this visualization stuff). Scientists are baffled by the phenomena, but there are number of case studies to suggest it works. I've never had a shortfall of attitude. Let's hope mine can kick this tumor's a*#!

Okay, now for the crappy news. After four hours in Bloomington, we still don't have a treatment plan hammered out. Dr. Thornton predicts that it will take a team of of scientists approximately one month to get the math and physics ready for my case. I have to be fitted for molds so that I will be completely immobile during radiation. I have to have plastic teeth guards made. A 3D composite made of lucite and brass must be built to the exact specifications of my tumor and connected to the robot who will deliver my radiations. I have to have several screws the size of bbs implanted in my head so that they can take exact measurements each time they aim the radiation. Crazy, huh?

Radiation is a funny thing. Certain parts of your body can only handle so much of it. When you go in for a CT Scan, you might receive 3 rads of radiation. Your spine can only take about 4,500 rads. Your eyes can handle a max of 5,400. It's going to take a cumulative total of 7,600 rads of radiation to kill this tumor. Since traditional radiation can't avoid things like the optical nerve or brain stem, they can't safely give me this dose unless it is done with protons. For this reason, Dr. Thornton is reconsidering whether I should undergo traditional radiation in Goshen. Essentially, he can't sacrifice giving me the full dose of protons. Currently, Dr. Wheeler is working on his treatment plan from Goshen. Dr. Thornton is working on his from Bloomington. When they have finished their respective plans, they will come together to decide whether there is any safe way to start me out in Goshen without sacrificing the full dosage in Bloomington -- even if it means I have to wait over a month to start and live in Bloomington for 8 weeks of the summer, Dr. Thornton is unwilling to compromise my care. We'll see. I'm praying for a combo plan that works.

Right now I'm caught in limbo land. Who the heck knows when I'm going to start radiation. It could be next week. It could be June. Dr. Thornton anticipated that he would bring me back down to Bloomington next week for at least two days to begin getting all my gear ready. Until then, we've worked out a plan that will help me not go so stir-crazy. I seriously feel like I've been living in doctors' offices for the last 3 weeks!