[Sorry! I thought I had posted this the other day.]
My meeting with my medical oncologist, Dr. Francois Geoffroy (pronounced “Jeff wa”), went very well. We were all very impressed with him. He spent time explaining brain cancers in detail. I was going to share some of it, but after talking to Mike, who understands it well and has researched it for me in detail, I realize I’d just confuse you. I have the worst type of the most common brain tumor/cancer. Does this surprise any of you? I’m either not in at all or all in – even with cancer 🙂
Radiation and chemotherapy are done together because research has shown that chemo aids the radiation in killing the cancer cells. He explained that the radiation shreds the DNA strands, hopefully in lots of places, breaking it up into bits. As he said, “good luck putting that back together”. I guess he was talking to the cancer cells 🙂
More story below, but we begin on Monday. There are two of these Trilogy machines for radiation in Peoria. The one out by Dr. Geoffroy is older. The one downtown at OSF is newer and supposedly one of only 11! Fortunately, I’m at OSF and they allow you to pick a consistent daily time, which is important. No coincidences. God is good – very.
Here’s how it will work. Mon-Fri I do 15 minutes of radiation and must have fasted for the three hours beforehand. one hour before my radiation I take the chemo pill (no intravenous!), which is called temodar, 140mg for my body weight. On Mon, Wed and Fri I also have to take an antibiotic twice a day. On weekends I don’t do radiation treatment, but I still take the temodar. This repeats for 6 weeks. The temodar alone for this 6 weeks is $6,000! I know God thinks I’m priceless, but let’s hope the insurance company doesn’t do an audit! 🙂 Thank goodness our part of the bill was a fraction of that.
One of the frustrating things about our meeting, and this isn’t a criticism of this incredible doctor, is that it’s clearer than ever there is still art in this science. He kept saying it’s really good to do clinical trials because that is how stuff gets published and then insurance agencies will pay for it. I told him I get that and am happy to do my part, but selfish as it sounds, my first priority is figuring out what will give me the best chance of survival. I asked, “So, should we start this now or should I look into alternatives like the vaccine at Duke?” (or something like that). He replied, “We have a good procedure here”. 🙂
I asked Mike if my being in there was preventing him from asking questions he knew would make me uncomfortable. He said yes and our cool Dr. immediately said, “Need to use the bathroom?” 🙂 The survival discussion nauseates me, Mike knows that, but he wants to get to the bottom of the same question I asked. Best friends don’t come better than this. So I left, Eileen stayed. They talked about lots of other options, but in the end we decided that we’d begin on Monday with the standard protocol.
Starting now may prevent some other options, but not all and not the Duke vaccine, which I’m personally very interested in. Dr. Geoffroy said he would help us connect with Duke. He knows the people and has talked with them before. Excellent. More details in the future, but here is what I understand. After my six weeks of radiation treatment I will continue chemo at a much higher dosage, like 2-3x. Standard protocol is 5 days on and 23 days off, for 6 months. One potential clinical trial does 21 days on, at a lower dosage, and 7 days off. The Duke vaccine is not an option for the second method, but with the first you can recover for 2 weeks or so and then get the vaccine before starting again. Still lots to learn about this option, but I believe it would be possible to be tested at Duke, but receive the vaccine here. In fact, it’s possible a good friends cousin has been doing that. I need to check. I just think more kinds of treatment seem better 🙂
I definitely am a bit nervous about treatment next week. I’m mostly concerned about having any side effects from the chemo, but fresh in my mind is the last time I laid on the torture table with the suffocating mask 🙂 Please pray it would not be painful and that I would not have side effects.
Sleep and Pain
I slept very little Thursday night. Most of Friday I had more pain than normal and even trouble with my eyes. I was actually a bit discouraged when I went to bed. However, I slept very well last night and probably got close to 8 hours! Even better than that, my head has felt really good all day. The best it has ever felt. Is that amazing? That’s God answering prayers. Thank you!
Here is my poor attempt to help you understand what I can’t see.
This is a drawing of my eye – both are essentially the same – and it is looking at you. Yes, my drawings in Pictionary are just as bad :-), though very effective. The shaded part of the drawing is where the “blind spot” is located. To further help you, when I’m just looking out across the room I see what looks like a pretty normal picture. It’s not like I’m seeing a black hole. The less light the more normal it appears.
It’s not really a box shape, I was just being lazy. My friend Todd was over today and he used a flashlight to outline it. From about 3 feet away it extends from the bridge of his nose to about 2 feet to his right (my left) It’s actually more of a weird oval.
Me and God are a majority against any enemy. Monday we go to war!