Genie Alisa

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Casting pearls before slime

We went to an SCA event this past weekend and several people mentioned they were looking for an update on Team Stryker. As Kevin of Thornbury said, "Are you sure you have the premium subscription to Team Stryker? That updates more often." And that's why we love Kevin. But really, I haven't been updating you all on the latest for Team Stryker because there hasn't been a lot to update. We're in a bit of a holding pattern. We went to see Dr. Lee here in Virginia Beach and like him very much. He said that he could give us the chemo treatments for colon cancer if we wanted, but he honestly didn't think it would help. Certainly doesn't make one want to jump at the chance for that!

Dr. Lee did mention that he has a friend from school who might be interested in our case, though. Her name is Teresa Bendell and she works at the Sarah Cannon Research Institute in Nashville, Tennessee. Minnie Pearl's real name was Sarah Cannon and after battling breast cancer, she started a non-profit foundation to explore cancer research. That led to the Sarah Cannon Research Institute in her name.

So I called the Sarah Cannon folks and got ahold of Dr. Bendell's nurse Melanie. Melanie has been super helpful but we have been going through a lot of shenanigans to get all of Rich's medical records transferred to Dr. Bendell so she can review them. Bendell specializes in GI malignancies, particularly the "odd" ones like Rich's. The idea is that we can get Rich into a case study where they would do a genetic panel of both Rich and his tumor cells to try to isolate something in particular to treat them. This is highly preferred to regular chemo which is a bit of "carpet bombing" your system in hopes of getting rid of the stuff you don't want there.

While we've been waiting for more information from Nashville, we went for "chemo training" at Dr. Lee's office. No matter what kind of treatment we decide on, it will most likely involve going to our local oncologist to have it administered and they require you complete chemo training before you can get treatment.

Hoo boy, that was depressing. We went for our two hours of training and as we sat in the car, I told Rich, "I didn't get bummed when we had the initial diagnosis. I didn't get bummed when Dr. Hanna called me 30 minutes into your eight hour surgery. I didn't get bummed when I saw cell phone pictures of your insides. But that right there? That really bummed me out!" I didn't necessarily have a panic attack while we were there, but I had a very strong sensation that everything this nice lady was telling us didn't apply to our situation. He doesn't need Xeloda. He shouldn't take Oxaliplatin. And nobody likes to hear someone tell their husband, "you can be sexually active but be sure to wear a condom for seven days after treatment and you do NOT want to get anyone pregnant." Then again, maybe our next kid could be Spiderman.

If anything, the chemo training solidified my desire to do whatever we can with the folks in Nashville. I still believe that Rich doesn't necessarily have cancerous cells in him but just misplaced mucus from his appendix rupturing. It's hard to target appendix cells to nuke those while not nuking other "normal" cells. We've been trying to get medical records shuffled since January 21 and it's been slow going. But the good news is the folks at Sarah Cannon are very friendly and they know us by name. That's the advantage of working with a small private research institute. And Southwest flies direct to Nashville, so it should at least be an easy trip there whenever it does happen.

In the meantime, Rich has gone back to fighting as of January 13 and back on the ice as of February 8. Those are two very big milestones. I should go get the slime notebook and write those dates in it so we can reference it in the same context. He had surgery on November 12 and nine weeks later was in armor. Another three weeks and he was in the crease playing goal. So while there is still slime inside him and we're dealing with all the frustrations of being one in 12 million (or more), things are still pretty okay.

minniepearl