WMD, Here We Go

Today was my first day back at work. OK, so I was only there for an hour this morning but still... it was good to be back. I knew I wasn't going to be there much but did expect to be back from the big city by 3 or so... we didn't arrive back in La Farge until 4:30. Not much workday left by then.

But oh, what an exciting day it was in the big city! Let's start with the EEG. Not a lot of excitement but it was interesting. It took the tech almost 45 minutes to get me all wired up. Right about the time she was ready to start the EEG, I decided I was going to need to go potty before we started. Without missing a beat, she unhooked a panel from the machine she was working on and slung it over my shoulder with the handy shoulder strap that somebody thought to put on there. Wow. So I peed with a big bundle of wires stuck to my head. On the way out of the bathroom I handed the tech my cell phone and had her take a shot for posterity. If I can figure out how to get the picture off my cell phone, I'll post it here.

The EEG was otherwise uneventful. The tech was happy my head was shaved - made her job a lot easier. I had to endure a bright blinky light for awhile. I even managed to doze off for a couple minutes, which I learned was a good thing. They were happy to have caught me for a couple minutes of sleep EEG. The whole thing including set up, testing, and clean up took nearly 2 hours. And that was the EEG.

Next I met with my Cancer Guide, Marti. She is kind of like my personal assistant/liaison with the Cancer Center. She told me all about various services that are available - things like Body/Mind classes, Healing Touch therapy, a staff dietician, a staff chaplain, a staff social worker, etc etc. She's yet another angel in my new cancer world. I'll be mentioning her again later.

Next it was time to make my WMD targeting mask. They laid me on a table, stretched something like a very porous wet dishcloth over my face, then stretched it across my face and down around the sides of my head. They blow-dried it for a minute, then let it continue drying while they took some CT scans of my skull. When they got done, it looked like a Jason mask, only more porous and covering most of my head. It was cool. I get to keep it when we're done with the WMD.

This mask, along with some wicked cool 3D modeling, is going to be used to precisely determine where they will be directing the beams of radiation. It will, to a ridiculously precise degree, allow them to focus the WMD on the death cells and spare the healthy tissue.

I need to take a time out here to talk about something I've been thinking about for a while now. That is the insane amounts of time, resources, and energy that are being spent on my behalf. Yes, I deserve it just as much as the next person, but sweet geezuss, they are spending a lot on little ol' me. It's staggering. For all you people out there who are paying your ridiculously high health insurance premiums that you hopefully will never have to cash in on? I thank you. I wouldn't have all this available to me if it wasn't for those premiums. Thank you again.

After the mask was done, we talked about the schedule for starting the radiation therapy. Charlie, the radiation tech, informed me we are scheduled to start Wednesday - THIS Wednesday. Gulp. I'm not sure what I was expecting, but I was not expecting to start so soon. For one thing, I was expecting to have a 2nd opinion consultation with a BT expert at Mayo. Unless that happened tomorrow (Tuesday), that wasn't going to happen.

When I pointed this out to my radiation oncologist (who IS a BT expert), he got his physician's assistant on the case. I sat around for a good 45 minutes (I was happy to wait) while he got the best deal, meaning the soonest appointment with a Mayo chemo BT expert. Turns out the best he could do was 9/24 - 2 weeks away. Decision time.

So here were my choices: 1) Start the radiation treatment as proposed, with chemo. Meet with the chemo BT expert at Mayo on the 9/24. 2) Start the radiation treatment as scheduled but doing it without the chemo until the Mayo BT expert signs off on it. 3) Postponing all treatment until Mayo BT expert signs off on the whole treatment plan.

Option 1 means that we start as scheduled but without approval of chemo BT expert on the chemo portion of treatment plan. Upside is obvious - immediately start treatment. We are assuming we are dealing with a relatively aggressive cancer here. We got most of the tumor during surgery so we have this window of opportunity where there is relatively little left to mop up. We just might nail this sucker right now. But I'm still nervous that a chemo BT expert has not weighed in on the treatment plan.

Option 2 means we start immediately but without the chemo until the chemo BT expert weighs in. That means that for 2 weeks I'd be getting the radiation but without the benefit of the chemo. This is crucial because the whole point of the chemo in this treatment plan is to prep the cancer cells to die more readily by WMD. Not liking that option at all.

Option 3 means we hold off on everything until chemo BT expert at Mayo gives us the high sign. Considering the "open window" theory, this option loses us 2 valuable weeks to start killing the cancer. With the aggressive strain with which we are likely dealing, every day counts. Two weeks seems like an eternity to wait.

In case you haven't guessed, it didn't take me long to choose Option 1. Here's why it wasn't all that hard. I had been thinking that it is likely that the treatment plan developed for me was designed by my BT expert radiation oncologist. This is his plan. The role of the non-BT expert seems to be that of someone signing off on someone else's plan. The chemo part of this treatment plan is standard operating procedure for this radiation treatment plan. I discussed my thinking with the physician's assistant and he concurred. Therefore, I am choosing to not place much weight on the fact that a chemo BT expert has not weighed in on my treatment plan. We do not have time to wait.

It was not an easy decision to make. Once I decided that I needed to have a chemo BT expert on the team and involved in my treatment plan, it kinda seemed like I was caving if I didn't insist on his input before starting treatment. But I'm trying to be less dogmatic. Once the options were on the table and it was clear that time is of the essence, any option other than starting treatment immediately and with the full treatment (including chemo) just didn't seem worthy of serious consideration.

So... we start WMD and chemo this Wednesday. The treatment I start Wednesday is designed by a radiation oncologist who is a brain tumor expert. I have an appointment to meet with the chemo BT expert at Mayo in Rochester on 9/24 (2 weeks from today) and will be adding him to my team at that time. I suspect we will have the blessing of the chemo BT expert at Mayo when he learns we've been killing cancer cells while we waited to meet him.

Once we decided to move forward, the physician's assistant got on getting my prescription for the chemo. (The PA's name is Dale. Let's call him Dale from now on. I'm guessing me and Dale are gone pretty tight by the time this is all over.) That wound up being another 1/2 hour wait in a consulting room.

Remember Marti? For the last 15 minutes of that wait, she sat there with me just keeping me company pretty much. She did give me some more info while we chatted, but she was basically just holdin' my hand. I don't think I realized yet what a stressful day it had been. She already knew. Angel.

I think Dale is going to soon wind up with Angel status. He's got that look.

Then it was time to try to get the prescription filled for the chemo and anti-nausea meds. While I was waiting for Theodoric the Barber to get my pills, I stopped up by my neurologist's office to see if he had seen my EEG yet. I talked to his main nurse and she let me know he wasn't in the office today. So I won't know about my driving privileges until at least tomorrow and probably Wednesday. Lori is coming with me for the first radiation treatment, so Wednesday won't be a problem. But after that I am desperately hoping to drive myself. We shall see.

OK, back to the pharmacy to find out they don't have my chemo! They'll have it tomorrow so I'll show up an hour early on Wednesday so I can take the chemo one hour before the radiation therapy as prescribed. On normal days I'll take the chemo when I leave from La Farge for the big city - it's one hour away. Soon it will be routine.

Major blessings on my driver today. Not only did she agree to spend half the day in La Crosse, she also was very gracious when my day wound up taking an hour and a half longer than expected. Let us celebrate Michele.

I thought today was going to be a relatively stress-free day full of medical marvels. It turned out to be a day I had to make the biggest decision yet in this adventure. Just a wee bit of stress there. I was caught off guard with how quickly my experts wanted to get this going. But I am happy that we're going full steam ahead. Lori, by the way is all systems go with my decision. So that's good.

This has been a long post. I am going to end it. Tomorrow we'll see if we can celebrate a full day at work.