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.

An evening at home with a three year old

I mentioned on Facebook last night that I was ordering a bed wetting alarm to help Ian stay dry overnight. There were lots of helpful suggestions like deny liquids an hour before bed, pee before bed, use pee pads, don't let him in our bed, use pull ups, or wait it out. I thought of all these suggestions as we went through our evening together to see where they might fall into our routine. Here's an example from today: 5:30pm - pick Ian up from school. He asks for Mama milk but I tell him no cause I wanna get home. He complies.

6:00pm - Grocery shopping on the way home. Ian cheerfully sits in the cart eating strawberries and goldfish crackers.

6:30pm - We get home. I change pants and refill cat food that the damn dogs ate while Ian decides he doesn't like his shirt then cries because he is cold and can't get his shirt back on by himself.

7:15pm - Dinner of homemade chicken soup is served. Ian has two bowls plus a half a box of Horizon chocolate milk. We play trains and watch Caillou on the iPad.

8:00pm - Ian pees right before we go upstairs. We read our two new books (The Three Ninja Pigs and A Sick Day for Amos McGhee).

8:20pm - Mama milk

8:30pm - We both lie in the dark trying to help him wind down for falling asleep There are many questions like how does his Lightning McQueen car sleep if his eyes don't close.

8:40pm - Ian asks to pee again. He insists Lightning McQueen come too. He asks for the rest of his chocolate milk but I tell him we have to wait so he won't pee. He complies.

9:05pm - Ian gets up to pee again but says I don't have to come. Upon his return he asks for water. I tell him no and he cries for 5 minutes that he's thirsty and another 5 minutes that he doesn't want to sleep.

9:15pm - We both fall asleep in the big bed.

11:30pm - I wake up and transfer Ian to his bed. Rich comes home and I make Ian's lunch.

12:00am - We go upstairs for bed. I get to put our freshly washed comforter on the bed. I notice Ian has half fallen out of his bed.

12:50am - Ian wakes up, crawls into our bed but moves to the sidecar crib next to me (surprisingly). He asks for more covers and Mama milk. I tell him milk can come later. He complies.

Part of the reason I let Ian in our bed is it's some of the only time we get to hang out. Otherwise we get from 5:30pm-8:30pm and a lot of that is bedtime routine and tears over the injustice of the t- shirt he's worn all day that is suddenly unacceptable.

Other than the bed wetting soaking us all, he is a delight at 3am.

*Update* 4:50am - Ian woke up and said, "I don't wanna be in the crib." and moved next to me. He asked for Mama milk and I complied, figuring this will be his morning dose versus at 6:45 when I'm trying to get out of the bed. Of course, that dose of milk led him to pee just a little. He didn't soak the bed, just his undies and fleece pants. But that's a start ...

Giving someone a lift

I was running early this morning for once. It was only because Rich was taking Ian to school, which shaves a good 10 minutes off my morning commute. Of course, I noticed the fuel light was on so I went from early to barely on time. As I pulled into Wawa, I noticed the car parked in front of me with its hazards on. The back right tire was a spare and the back left tire was flat. "Well, that's a pickle." I thought to myself, as I got out of the car. But as I pumped my gas, I kept looking at the car. The woman had gotten out and was trying to use fix-a-flat on the left tire. That's when I noticed that the tire was not only flat, but shredded as all her flat fixin' goo went right out onto the pavement.

The woman had gotten back into her car and was just sitting there. She wasn't on the phone. She wasn't rummaging around in her car. She was just sitting there. If she had AAA, she wouldn't have even tried to fix the flat. If she had someone to rescue her, she wouldn't have tried to get her tire working in the 25F cold wind. I decided to at least check on her.

I pulled up and told her I noticed her tire was shredded so her fix-a-flat didn't work.

"Yeah, and that was my last dollar I spent on it too." "Are you heading to work?" (She had on nursing scrubs.) "Actually, I'm heading home." Ah, 7:45am. You just finished your 12 hour shift somewhere. "I can take you home if you want. How far away do you live?" Later I realized she could have said something like Suffolk and I would have been in for a long haul. But she said she lived off of Virginiaa Beach Blvd and I figured it couldn't be but so far. It's only but so long of a road. "Are you sure?" "You don't need to sit here at Wawa all day. I can at least get you home."

She gathered her purse, her keys, and a third of a store bought cake (which seemed a little odd) and climbed in the car. I asked her where she worked and she named a nearby hospital. I told her my best friend just became a nurse and I know how the long shifts can be brutal. I asked her if she had to work again tonight and she said yes. So time is limited to fix a tire and try to sleep again before 7pm. We drove on a little more in silence.

She said, "I'm so sorry to send you out of your way, but I really do appreciate it." I told her that work would still be there once I got there and she looked like she was having a rough morning.

We stopped at a stoplight. I took note of the fact that she hadn't been crying. I would have cried at some point in this process I'm sure, if just to get it out of my system. She just looked out the window calmly and sighed occasionally. After a bit she said, "This birthday sucks."

"Is it your birthday? That explains the cake." "Yeah, my co-workers had a surprise pot luck for me at work last night." "Well, happy birthday! Sorry you have to deal with all this today."

We pulled up to her apartment. It was in Ingleside, near industrial park Norfolk. Some people would have called it a rough neighborhood, but a million years ago, Jeremy and I had looked at a house over there. She got out of the car and said, "God bless you!" I told her I was just happy to help however I could. I wished her happy birthday again and I told her good luck.

I wanted to write all this down to remind myself about all the emotions I had in the Wawa parking lot. Would she need my help? Did she have things under control? Was she clearly flipping out or just assessing the (pretty crappy) situation? Did any of that matter before I would talk to her?

My therapist Gary talks about how I'm a very empathic person and we ponder sometimes about how it can be a difficult trait to manage. It certainly can be exhausting. But were that me in the Wawa parking lot, I would have wanted someone to at least check on me. She's at work tonight (hopefully) and I hope she got some decent sleep this afternoon. I'll sleep better knowing she at least got home safe and sound.