Double the pleasure, double the fun

Tuesday at lunch Rich’s phone rang; it was a nurse from Sarah Cannon. “So I have a strange question … what color are the pills you’re taking now?” she casually asked. “Yellow. They used to be gray but this last time they were yellow. I thought that was strange but figured the color didn’t matter,” Rich replied. “Oh …. yeah, about that.” And that’s when we found out that the pharmacist had accidentally given Rich pills which were 150mg each instead of 75mg each. Since January 8th, Rich has been taking 300mg of his meds a day instead of 150mg. And from January 8th through January 29th while he dutifully took those pills, the Stryker house has been under a lot of stress.

The good news is the study has lots of data on what happens when you jump from 150mg to 300mg all at once. The bad news is that side effects include constant soul-crushing emo song inspiring headaches every waking hour. A corollary to that is your wife wanting to murder you in your sleep because your way of dealing with headaches is to be an asshole for three weeks straight.

We’re all better here but January of 2014 will have a ripple effect for quite a while. Historians will one day write doctoral theses on how it shaped decisions for ages, like the assassination of the Archduke Franz Ferdinand and his wife leading to World War I.

Originally I was going on today's Nashville trip with Rich to ask in very small words what we were all going to do about these headaches. But on the day before our flight, a great mystery was solved. And so I used my time to make it very clear how unhappy we have been for 21 days. I told the doctor that the pharmacist owed us a spa weekend or perhaps an Edible Arrangement. She assured me that it was not being taken lightly and that an entire investigation was in progress. She said there may be blood stains on our next bottle of pills we receive today. We can only assume that pharmacist was killed and his head set on a pike at the desk of the new pharmacist as a reminder to check his work.

Later today, we met with the nurses and they went over all of Rich's side effects over the last month in detail. The nurse apologized again to Rich. As I was gathering our things, she told him, "I know your wife talked to Dr. Bendell about how unhappy she was and I just want you to know we're very sorry." Rich says that there is now a note in his file about his wife, much like Elaine going to the doctor on Seinfeld. I'm okay with that so long as I get my Edible Arrangement.

We are now back on track with gray pills, only occasional headaches, and the foundation of our house settling back into its original place.

One year slime anniversary

Today almost slipped by before I realized what day it was. One year ago today, Rich went in for his slime-ectomy. That was quite a day! It seems like a million years ago. I remember taking pictures before he went back for surgery. I remember going to Panera across the street for my blueberry bagel. I remember going to the hotel room where his parents were with Ian. I remember talking with the surgeon on the phone only an hour or so into his supposed eight hour surgery and realizing that was significant - not necessarily bad, but worth noting.

And I remember walking back to the hospital from the hotel just before noon. I had not made plans for someone to be with me during the surgery time frame because it was supposed to take hours. And with Rich's folks watching our kid I was suddenly very alone.

I called my mom's work number but she was in class. I have never been so irritated that my 74 year old mother was still working as I was on Monday, November 12, 2012 when I wanted to talk to her and couldn't. Megan was in class. Kim was asleep. Shannon didn't answer. Mr. Smith was not quite off work yet. Jake was at school. Kevin works in a bunker. WHERE IS EVERYONE?!

This image is from a great little book called Owl Babies that we've read to Ian many times. A year ago today, I felt like Bill. Only much later did I notice my phone had exploded with voicemails from Mom.

I did get a text back from Shannon about the same time that Mr. Smith said he was off work. I told him that his wife totally trumped him in being optimistic and that's what I really needed right then. When Shannon asked who was with me, I told her, "it's just me and the Internet." "I'm on my way." she blurted out and the tears of relief fell.

Anyways, long story short, a year ago today was a whirlwind of a day but by bedtime things were looking up. I am so grateful for everyone's support over the last year. I just realized today that Mel came to sit with us in a hospital only a few days after the anniversary of Gyrth's passing. Shannon dropped everything to drive to Baltimore. Megan bent space and time to care for our kid (who threw up all over her in thanks). Beth was there with open arms once I finally got back to her house at some point in all that blur. Everyone honored the notebook and kept dutiful records of how Rich was doing. Rich was never alone the entire time he was in the hospital and that is a phenomenal thing, one that means the world to me.

I've been in a funk today and maybe this is partially it. It's also the frustrating client release this week, this head cold, these hormones, the insanely high blood sugars, and the travel schedule I have for the next few days. But as I've scrolled back through my year of iPhone pictures I've seen a million amazing moments we've had since last year. Holidays, vacations, goofy selfies, videos of Ian singing (so many videos of Ian singing!). And after all that, I'm just feeling overwhelmed and grateful. Grateful for all of you out there on the Internet. Grateful for everyone who helped in each small way. Grateful for the continued efforts of the lovely ladies in Nashville at the Sarah Cannon Center.

But most of all, grateful for Rich.

Just keep swimming

Rich has been heading to Nashville and the Sarah Cannon Cancer Center since June 1. I went on that first trip for the several days it took to biopsy and verify his dosages would not cause him to sprout a second head. After that, his trips were just for a day at a time every three weeks and he's gone alone. I had started to notice his mood change over the course of those three week cycles, though. Much like chemo treatments have a cyclical effect on the patient, Rich would get better immediately after a check up but as the next visit loomed closer, he would get more and more sour. The night before his flight he could be almost unbearable as his worry caused him to be a Great Big Weirdo.

After Rich's last appointment, I decided he needed a buddy to go along. Specifically, he needed the Chancellor of Optimism at his side for the day.

Today was our day. But the story starts last night. I was trying to get Ian's lunch packed and Ian was going potty and all of a sudden Rich was super worried about his appointment. I was then dealing with "healthy snacks" and coaching Ian through folding toilet paper and the countdown to bedtime and my husband looking at me with panic in his eyes because the CT scan is not at the office it normally is.

Those of you who are lucky enough to never have been plagued with anxiety may not be familiar with how it gets in you and won't let go. It's like drowning while having the flu. The stomach knots combined with the tight chest and the feeling of isolation from being underwater. There may be people in boats around you telling you that it's not a big deal. They will try to yell to you as you sink under the water that all you have to do is X and everything will be fine or that the water is not that bad. And you look at their shapes up above and squint as if what they said is so crazy you gave to try to refocus your eyes to make sense of it.

I know anxiety. But Rich is normally that guy in the boat yelling down at me through the water. This slime has been a real role reversal for us, one neither of us is very comfortable with.

I sent Rich upstairs to put Ian to bed. Then I sat down and mapped the imaging center's address with detailed directions. I rented us a car for $30 so we wouldn't have to navigate cabs across the various locations. I packed Ian's lunch. And honestly, I went to bed a little irritated, though not necessarily at Rich, just at everything. Some day off. Hmph.

Rich slept horribly and woke up right where we left off. He worried about Ian getting to school on time. He worried about us getting to the airport. He worried if our car would fit in the garage with the car top carrier still on it. We were off to a rough start. I walked to the security gate blinking back tears, mostly because there wasn't time for crying quite yet.

But we made it to Tennessee. He got his CT scan and we got to his appointment. It was fine that we were late because they were all running behind from the holiday weekend.

We talked with Dr. Bendell and she was very reassuring. Rich's scan continues to show no growth or fluid. This is good because we had seen some growth between November and April. The clinical trial is going so well that they're adding many more patients, going from eight to 70 nationwide. They also are comfortable raising his dosage from 40mg daily to 80mg daily. We are hopeful this will provide some shrinkage versus just lack of growth.

We talked about how he will most likely be a patient of Dr. Bendell's for a long time. We will continue to play things by ear when it comes to growing our family versus shrinking Rich's slime. But it's good to know even taking a hiatus does not kick us out of the Sarah Cannon family.

After all that, I got my husband back. He came up out of the water. Maybe not completely in the boat but at least above water. He's lounging on me while we wait for our plane home, teasing me over the noise of my typing so close to his head.

I am glad I came today. I'm glad I could help him tread water through a rough day. And I'm looking forward to going home with him.