reminders

Aimee and I got to have lunch with a friend downtown this afternoon. When we were done, we went up to the Sanders\Wingo El Paso offices to drop in and say hi. It was great to see everyone we had time to talk with before we left to pick up the girls from school. Thanks to everyone who took a minute or two away from their desks (I swear that’s all it was, Bob… Just a minute or two) to talk with us. My apologies to all the folks we missed. We’ll be back.

Anyway, aside from thanking everyone at the office for chatting with us this afternoon, I wanted to post tonight for another reason. It’s impossible to ignore the love and support that I’ve been offered from every angle throughout this whole thing. I never could have imagined that family and friends and people I’ve never even met would care this much about me. And while I hadn’t forgotten the support that everyone has offered, I had forgotten the intensity of it.

I could never thank any of you enough to adequately express the gratitude I feel for all that you’ve said and done and prayed. I’ve done nothing to deserve any of this. But thank you. You keep me going.

p.s. I may have been in the El Paso offices of Sanders\Wingo today, but they’re not the only folks from the agency who’ve been with me in this thing. Everyone at this amazing company has shown me their love and support in countless ways, from raising money to help us pay medical bills to mowing our lawn and decorating our front porch with flowers. And much, much more. AND that only includes the stuff that I know about (and that I can remember… that first month or so is a little bit cloudy from the liver pain and the morphine). I’m sure there’s tons more that’s gone on behind the scenes. Thank you all. I’m blessed to be surrounded by such incredible people.

new numbers

There’s one thing I forgot to mention in the video. The doctor says that Taxol can sometimes elevate bHCG counts and that we can’t know for sure exactly what’s happening until the next test.

cycle three, week two

phoenix wrap-up

Once again, it’s been far too long since I’ve updated. But I’ve been staying busy… sorta. I’ve been trying to spend as much time with Aimee and the kids as I can while still getting all the chemo done and trying to get some exercise every once in a while. It’s harder to update this blog regularly when I’m not confined to the hospital bed like I was in Indianapolis.

Anyway… We went to Phoenix last weekend for the Rock ‘n’ Roll Marathon. Lots of folks on the Fight for Feuille team ran the 1/2 marathon to show their support and raise money for the fund. It was a lot of fun to see everyone, and I’d day it was a huge success. Aimee ran with the team, and I joined some of the guys as we rode around the course meeting up with the runners from time to time. I wish that I’d had the Globe with me, but Jonce lent me a sweet old Schwinn from his stable of classic cruisers, and it was a lot like riding the Globe.

But enough talk. Here’s some video:

I’m also trying to collect some more photos to put up and share. I should have those ready in the next couple days. Huge thanks to everyone who came and lifted my spirits, and especially to Ashlie Swanson and Katie Walker for putting it all together. It was fantastic.

Another thing that happened last weekend was a Fight for Feuille benefit concert in Chicago and featuring the band Portable Models (whom you can find on facebook). The concert was also a huge success, raising a ton of money for the fund. My sincerest thanks to Edith and JL for putting the whole thing together, to Portable Models for playing their sweet tunes, and especially to all those who came out to the show. I can’t thank you all enough.

This week has been a little rough on me physically (I’m just about ready to go lie down again), but there’s one more thing before I wrap up this post. Some friends of mine from college have a band called Burning Daylight. Sadly, Burning Daylight is playing their last show this Saturday night. But the band has decided, very generously, to play their last show as a Fight for Feuille benefit. You can find the details by clicking here. Please join us in making the band’s last show a memorable one.

Thanks again to all of you for all your prayers and support. It all means more to me than I could ever hope to put into words. And thank you for sticking with me when these updates are few and far between. I’m trying to get better about it as we start to settle into more of a regular schedule here in El Paso.

quick update

I have a bunch of videos to get up here on the blog, but I haven’t had the time to import them onto my computer and get them all exported and then sorted out on vimeo, but I wanted to quickly let everyone know what’s been going on.

Today’s dose was the third week in the second cycle of Taxol and Gemcitibine. Each cycle is, in theory, four weeks long. Three weeks of chemo and then one week off. They made me skip the third week in the first cycle because my white blood cell count was so low, so I did the break week when I would have been receiving chemo.

This chemo hasn’t been too bad in terms of side effects. The biggest thing is that it aggravates the nerve pain I have leftover from the surgery in Indianapolis. I can’t stand still for very long without getting a decent amount of pain in my lower back and left leg. Sitting down with my feet up seems to help a lot, and the doctor has given me a prescription for something to block the nerve pain and then some regular painkillers as well. I try to take them as infrequently as possible, but I need them occasionally just to make sure I can stay up off the couch.

The other thing is fatigue. I’m still spending more time than I used to in bed or lying down. I wish that I could be more active with the kids, but if I don’t get the rest I need, the nerve pain gets really bad and triggers these migraines where I get a really intense pain in the front of my skull, experience some weirdness with my vision, and end up throwing up (so far once on the side of the road in Kansas and twice in the desert behind the movie theater here in El Paso!). Once I get the migraine, I’m in pretty bad shape for the next three or four days.

And lastly, I have a pretty disgusting, acne-looking rash on my face, scalp, neck, chest and back. So that’s cool.

All-in-all, though, not really that bad. Especially in light of the fact that it looks like the chemo is already working! Dr. Einhorn told us to expect the tumor markers to rise until at least January, and that we’d have to do at least two full months (and maybe more) before we could determine whether or not it would be worth proceeding with the full course. But they drew blood last week to check my tumor markers and (you have have seen this on twitter), they’re down! The last time I had them checked in Indianapolis, my beta HCG (the only marker that’s really been out of normal range since sometime during the first course of treatment) was at 14K. Last Monday, they measured it at 496! So in spite of Dr. Einhorn’s prediction that they would be up right now, the levels are down. And way down! I still haven’t had a chance to speak with him about it and get his opinion, but Dr. Valilis (my oncologist here in El Paso) is encouraged. He, like me, is ready to continue being aggressive as we can be. We’d both like that number to come all the way down into the normal range (0-5 IU/ml).

I think the only other news right now is upcoming events. I’ll be in Brownwood, Texas this weekend with my friend Noel Kerns for a showing of our photography, next Thursday is the Fight for Feuille Benefit Concert featuring the band Portable models in Chicago, and next weekend is the Phoenix Rock ‘n Roll Half Marathon. For more details on the concert or the run, please click here. Thanks!

Love you all. I’ll have something new up soon(ish). Promise.

merry christmas!

back again

It’s been a long time since I’ve updated, and I’m sure that there’s information that I’ve forgotten to include in this video. Make sure to let me know what questions you have in the comments. Thanks. I’ll post again soon with answers soon. Promise.

Also, in case you don’t already know, you can sign up for email updates by typing your email into the box over on the right underneath the twitter updates. This is a different system from the CarePages updates, and if you want to be notified via email when there’s something new here, you have to submit your email address again. Sorry about the redundancy. And just so you know, the text from each post will show up in your email, but you have to click through to the blog to see the videos. Thanks.

one quick thing

Tomorrow night in El Paso, the Chili’s on the west side of town will donate 10% of the proceeds from each bill to Fight for Feuille when they’re presented with this flyer (this is a link… click here to download the flyer).

If you go, ask to sit in Becca Wilson. All her tips from the night will go towards her entry fees for the Rock ‘n Roll Half Marathon in Phoenix so she can run with the Fight for Feuille team.

Thanks for organizing this, Becca!

catching up

Videos are back! Now that it’s a little easier for me to sit up at a table for a little while, I’m hoping that I can get back to posting more videos (especially with all that I have of the kids and stuff). Hang on until the end for footage of my first ride on the on the Live 2 that Globe sent me.

Speaking of the bike, it’s awesome. Thank you, Globe.

The big news is that we’re headed back to El Paso by way of Austin pretty soon. We fly to Austin on Friday the 4th of December and then on to El Paso on Monday the 7th to start chemo either that day or the next.

While we’re in Austin, we’ll be staying out in Burnet. And anyone who’s willing to make the drive out there is invited to come and hang out the afternoon/evening of the 5th. Since we won’t know how many people are coming and can’t anticipate how much food to have on hand, please bring something to share if you’d like to eat. You don’t need to bring anything in order to come, but if you think you might be hungry, you’ll probably want to. Come by anytime after 1pm. The pool will be heated (if you’re into that sort of thing), and there are yard games like horseshoes and stuff that people can play. Here’s the address (please only use Google or Yahoo maps to search for directions… MapQuest won’t get you there):

200 Log Country Cove
Burnet, TX

Or you can visit logcountrycove.com for directions from north and south Austin.

If you’re the praying sort, please pray for my dear friend Rhonda, who is having surgery for breast cancer tomorrow. Already a breast cancer survivor, Rhonda has been a huge source of encouragement and support to me throughout this ordeal, and it would mean a lot to me if you could offer up your prayers for her tomorrow. Thank you.

overdue

It’s true. I’ve been slacking off when it comes to this blog. But it’s been kind of a rough week for me on many levels.

On Monday I went to a lab here in Louisville to get my bHCG levels tested. The folks there told me that they have to send the blood to another lab for the actual testing, but that I would probably have the results that afternoon since the order was marked for rush testing. They said the results would come Tuesday morning at the latest.

They didn’t. Mike knows that I get anxious about getting the test results back and that Dr. Einhorn’s office usually takes a while to get back to me. Since Mike’s a surgeon, he and his office staff have access to that particular lab’s test results. So they were able to pull up my name in the lab’s system to see if the numbers had come back.

When nothing showed up Tuesday morning, Mike’s office called to see what was going on. They were told that the results wouldn’t be available until Thursday. So I spent most of the week in anticipation of the results from a blood test I took on Monday.

On Thursday, the lab finally published the results in their system (even though now, on Saturday, Dr. Einhorn’s office still hasn’t seen them), and my bHCG is at 1400. Up from 1100 the week before.

So then I had the privilege of trying to figure out whether to be upset that the numbers are still rising or glad that they had only risen a little bit relative to where they’d been. At this point, I was expecting to see my bHCG at 2000 or more. I actually asked Mike twice to make sure that the number was 1400 and not 14000.

Then I had the privilege of trying to figure out if the increase had slowed as a result of the surgery or my diet. And then trying to remember exactly what I’d eaten that week to see what about the diet, if anything, had been working.

The full physical effects of the surgery hit me pretty hard this week, too. I’ve spent so much time resting that I’ve gotten pretty restless. I’m ready to be up and around again, but my body is not.

I also spent a good portion of the week trying to decide what to do next. Josh helped a lot by tracking down some information from other hospitals, but the possibilities for the next stage of treatment seem nearly endless when you consider all the traditional, holistic, and blended approaches.

As I weigh the options, I can’t help but wonder whether I made a mistake somewhere in the course of treatment. And if it’s now too late to correct the effects of that mistake.

Right now, we’re planning on going to El Paso shortly Thanksgiving to follow the chemo regimen suggested by Dr. Einhorn. When we actually leave will depend on when we can start treatment, so we won’t have an exact date until I can talk to the oncologists there to see what kind of schedule we can work out.

Thanks to all for your patience. I know from some emails and comments I’ve received that some of you have been waiting to hear the news, and I’m sorry to have kept it from you.

If you pray, please pray for discernment and for peace of mind. I’ve been having a hard time making all these decisions and not questioning if I’m making the right ones. Thanks.