It's quiet this time of day/night. Before you get all "tsk tsk" about my being awake, I give you the Wikipedia article on segmented sleep that says it's natural and "important in regulating stress." It actually feels quite nice. My Facebook feed has slowed down a bit so I can better digest the last 24 hours. It's been a wild ride and we're not ready to get off quite yet, but there have been some good things here.
The Healing Garden. When we signed Rich in, we sat in a waiting room that was small and plagued by mindless day time TV and local news antics. I could not get out of there fast enough and assumed all the waiting rooms were like that. And then I saw the Healing Garden.
It had tons of couches, real trees and plants (and the birds that any giant building ends up with), natural light, pillows, blankets, puzzles and an attentive staff. They walked the area every hour to check on you and give you updates.
And that's where I met Gladys.
Gladys was one of the three attendants of the Healing Garden and is a registered nurse. She is calm, friendly, reassuring, organized and gives great hugs. If you're sitting alone having a tearful phone call, she will come over and put her hand on your shoulder in a reassuring but non-invasive way. Gladys is pure magic.
When I was trying to explain to someone what they found in Rich I lamented that the doctors saw it but I wouldn't be able to see what they saw because I'm sure they are busy in there and aren't like me with a camera strapped to my wrist documenting everything 24/7. And then Dr. Hanna came out to give us an update. He pulled out his HTC phone and proceeded to show us in detail what my husband's insides look like. Concrete information! I started to take a picture of his phone and he said he could print them for me and I said I'd really rather have them electronically. So he took my email on a scrap of paper and within an hour had emailed me the photos. It's a simple thing, really, but it helps immensely to let a picture or two speak for itself versus trying to explain in words.
We went over what we knew so far and Dr. Hanna said he would be happy to repeat it all again the next day because it was a lot to digest. But when he left, Shannon (who had come to be my rock once things got pear-shaped) produced detailed notes from everything he'd said in the garden. She had been sitting a respectful distance but dutifully transcribing everything he said so we didn't have to. It was the first of many priceless things she has done for us already.
Shortly before all that, we had managed to meet up with Megan for her to take Ian home with her. Megan used to be a preschool teacher and she is like a siren that little kids are drawn to. I called her while she was teaching her class, she promptly cancelled it immediately and came to get my kid. She brought him home to her own kids for them to play dinosaurs, play drums and watch Cars. And she put him to bed by 8:45pm then sent me a picture.
That picture gave me such solace that Ian was doing okay. He was somewhere safe, he was happy and he was sound asleep. I couldn't ask for more. You can read about Megan's day with Ian on her blog as well.
Those were some of the biggies that kept me going today. But there were little things too.
- The wifi at UMMC is phenomenal. Fast, reliable and non-restrictive. With so much of my support coming from the Internet, it's nice to know it's going to work everywhere I need it to.
- There's a Panera Bread a block from the hospital and the Au Bon Pain downstairs is 24 hours. I sit here at 3:30am with my bowl of beef vegetable barley soup and warm coffee. Those two restaurants are great comfort foods for me that don't wreck my blood sugar. Knowing I can get a decent meal at any hour is a great comfort.
- The weather today was gorgeous. I didn't need a coat which saved me from lugging it all over. I am greatly affected by the sunlight or lack thereof and when you get the news that OMG your husband is full of yucky things and they're sewing him back up with yucky things still in there, it's nice to have a half mile walk in the sunshine between the hotel and the hospital to help collect one's shit.
- As Dr. Alexander said (he's the other surgeon here who works on belly slime and equally nice) when he came to visit, the tumor in Rich's abdomen has not constricted his intestines and is merely hanging out in the area. So while there is a lot of it, it's not keeping him from eating and processing food. If we can reduce the tumor through chemo, it's that much better for Rich to have fully functioning plumbing.
- Our nurse's call number is the same as our anniversary - 6907. It's a little thing, but it pleases me to see it on the dry erase board and it's easy to dial.
- Rich is resting well and in good spirits. As long as I keep my collective cool, he seems to be doing okay. His belly is very sore, but he's lucid, drinking water in small doses and still clever as ever.
- We brought our own grippy socks for Rich's feet versus the ridiculously small ones the hospital provides. He has a 14" wound up his belly and that was his greatest concern. So, yeah, it could be a lot worse.
- Because this condition is so rare, and he then kicked it up a notch by being all tumorific, we don't have examples of other patients in a similar situation to know what to expect. That may not sound good, but I actually prefer it right now. I don't want someone to tell me that everyone who has this regardless of age or health dies in 47 days so we'd best put an Outlook reminder for that day. I want someone to say we have a plan to try next, we'll see how Rich reacts to the treatment and then we'll reassess. No scripting. In a strange way, their not knowing what to expect for certain makes me feel like we all have a bit more control over how he'll fare.
- Rich's room is like a dance floor and it's all for us. There is this giant recliner thing plus a giant sleeper sofa and then two giant chairs. There's a whole 12' counter for us to store all our collective crap on and room for everyone to spread out. It's bigger than most NYC apartments. It helps make this place feel more homey when we're not all stepping on top of each other.
- Shannon thought to bring real tissues that don't shred your nose. I hadn't planned on so many tears or so much snot from this stupid head cold so it's nice to have that little comfort.
- Rich's folks have been great. I know many people who would loathe the idea of going through all this with their in-laws but they are on board and staying strong and letting me focus on my own stuff. They're also willing to talk and not get all weird and about all this. It helps me stay comfortable and I'm proud of them both.
Today was rough. This morning really pulled the rug out from under me and I'm sure you all too. But like any great team, we re-grouped on the fly and are staying on course.
As far as I'm concerned we're still all about the green and orange. Appendix cancer's ribbon color is amber supposedly and that's pretty close to orange in my book. And we still may have some slime to deal with in the future and possibly even another "shake and bake" surgery down the road. But everyone's green and orange today made me proud and there's no reason to lose that momentum.
Thank you. Thank you for your random bits of advice. Thank you for your prayers. Thank you for your humor. Thank you for your flexibility in the face of tumors that don't understand people have jobs during the week. Thank you for all your love. And thank you for reading all this.
I'm at the end of my two hour "period of wakefulness" according to Wikipedia. But putting all this down allows me to calm all the voices in my head enough to settle back in for the night. It's still quiet. And it's comforting to watch Rich's chest rise and fall in an easy rhythm while he sleeps. It helps me feel like we'll be okay.