a smaller life

the thirteenth list of Very Good Things

 

 I'm back, I promise, and with the 13th list of Very Good Things, too. Broken out over here.

I have things to say, but not today. Today is a headache day. Tomorrow should be better. In the meantime, have some Hugo.

 

Puppies make most things pretty all right.

 

 

segments

"We're all terminal," he tells me. For a moment I think it's an incredibly callous thing to say to someone in my position, but the moment passes. There is a comfort in someone, anyone, being honest and direct about these things. We are so rarely honest or direct about these things. It is good to hear the truth, even when the truth isn't new or surprising. 

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We still don't know why this happened to Sam. They have new tests, they say, since the last time this happened. They're running tests on his Factor VIII, which sounds like something out of a Resident Evil movie (but isn't). At first, I wasn't really sure that it mattered why this had happened; if we knew how to stop it from happening again (a life on Coumadin) then I was willing to let go of any why and just get into our old/ new/ current how.

I brought our older dog to the veterinarian's office today. Nothing big, just some shots, the annual inspection. While we were there, a dog that had been through a routine operation that morning died in the middle of the waiting room floor. Most likely a blood clot, a vet tech said. The tech was crying. A blood clot had travelled to the dog's heart, or her lungs, she thought. It seemed to go on forever, but it was only a minute or so. It looked like a seizure, and then she died.

I watched the dog dying and wondered exactly what the difference between this dog and my husband was- outside of all the obvious answers. That, I suppose, is why the why of all this suddenly matters to me. I need someone to tell me that my husband isn't going to surprise us all by dropping dead from another clot, somewhere different, somewhere worse. I need a doctor to prove to me that they are so all over this thing that they even know why it happened, just like you see on TV.

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This isn't going to stop happening. This is our life. Even if it all goes as well as it can possibly go, it changes things, and it changes some things forever. I can spend some small amount of time grieving for the life we had in mind, but then we get back to mantra # 1: we only get so many days. I don't want to waste too much time on things that don't matter. I could be here now, in the life we have, and that is a lot more productive and worthwhile than fussing over the life we had planned.

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I am suddenly hyper- aware of all of our things. I want to have so much less. A summer purge. I know it is tied to all of this, but I don't begin to know how.

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This entry seems like disjointed bits and pieces, but it isn't. I know it isn't.

and more waiting

It's been a series of ups and downs; first Sam was doing well, then not- so- well, then well again. We're still in what I'm coming to think of as "the well zone" and I'm cautiously optimistic; the doctors have pushed back when they think he'll come home, but they think he's out of danger, which is what matters.

The clot is still taking up space in his head, and it will be for weeks, months- possibly years- as the Coumadin chips away at it. If this goes anything like last time, I think it will probably be another year until the passages in his head are clear, but again, I'm okay with that. He'll be on Coumadin for the rest of his life, and that's not great, but it's better than the other option: likely death.

If his INR (a test of how his blood clots) continues to climb and the pressure in his head stays the same- or, even better, lessens- he  could be home with us as soon as Monday afternoon. No promises, they tell us. I'm not counting on Monday- I've been here before, and it never is as quick as they think it might be- but that would be nice. When he comes home he'll still be weak, and his headaches will take weeks to resolve, but at least he will be home.

Really, though, I don't care. The only thing that matters tonight is that he's pretty much in the clear: things aren't getting worse, and it looks like there was relatively little impact. So he's alive and intact. What's more important than that?

the waiting game

 

Still no real answers from Sam's doctors. There's a lot of talk about how rare this is, and a lot of interns coming in to peer at him- baby doctors, is what I call them in my head. They're cute, all inquisitively asking the same questions, all confusion and wonder. They look at my husband as though he is some privilege they receive, this statistical, diagnostic wonder. And I suppose he is, and I'm grateful they get the chance.

The waiting, though, is interminable. They can't seem to lower the pressure in his head at all; it isn't climbing, but it isn't going down, and we're at about the end of what pharmaceuticals can manage. The next step would be a spinal tap- more of a drain, the word "tap" used the way you'd tap a maple tree. I hope we don't get there, but at least that's an option before all the talk of stents and shunts.

So that's where we are. Waiting. Hoping. Crossing everything. Knitting, incessantly, that too. But mostly just waiting. I'm getting better at that.

 

the twelfth list of Very Good Things

  

   

Another list of Very Good Things. Broken out in flickr, here. (Apologies for a cut and paste link- I'm typing from my phone, and I'm not sure if this app accepts HTML.)

For those who haven't heard, Sam is in the hospital again. He's been in Hopkins since Sunday, when he suffered a cerebral vein thrombosis. It is his third- the first two showed up in 2006. He had been chipping away at those clots for 4 years with a blood thinner called Coumadin, and last month a vascular Neuro gave him a clean bill of health and took him off of the blood thinners. The chance of recurrence in someone of good health with no clotting disorders was virtually nil, he said.

I don't know what the word for someone who has the luck to be that .1% is, but we're it. I think the word is unlucky, actually. Hell.

It is harder today to focus on what is good, although they do tend to stand in stark contrast against everything else right now. Still, it isn't all bad; they doctors and nurses are kind, the prognosis is thus far pretty good, and the outpouring of support and well- wishes has been wonderful.

For those who have asked where to send cards- and thank you, so much, thinking of us- here is the address.

Johns Hopkins Bayview

Samuel Taylor, patient

Neurology critical care unit, 677A

4940 Eastern Ave

Baltimore, MD 21224- 2780

 

Be well, all. 

the ninth list of things that make me happy

 

 

 

Broken out on Flickr, of course.

My doctors and I have only recently really gotten a handle on how my disease is affected by heat, and this weekend was unbelievably hot. The current direction from my neuro is to avoid being in any temperature above 70 degrees for anything over thirty minutes. I'm pretty sure we both looked out the window at the already ridiculous Baltimore weather immediately after he said it; I know I said something like, "How am I supposed to manage that, exactly?" and his response involved shaking his head and suggesting I consider a handicapped placard for my car. 

 

I had an outdoor wedding to photograph Saturday at 11, but it was already in the 80s by 10 am. I shot the wedding anyways, with the help of a little sangria from Carma's Cafe and with Sam as my second, which helped a ton. (Side note: I'd like Carma's to cater my life, please.) I got the hell out of dodge immediately after the ceremony, and I think I did all right; I was feeling pretty crap at the end there, but air conditioning restored me pretty quickly and was careful with myself for the rest of the weekend.

The wedding really solidified what my doctors had been telling me: heat and me are a terrible mix. I had held secret hopes of being able to peek into Maryland Sheep and Wool for an hour or two, but after the wedding there was just no way; I missed it entirely, as I'd expected to.

The idea of missing MDS&W made me very sad: it seemed like a particularly egregious symbol of the recent, unwelcome changes in my life. We had a meetup on Saturday that I missed (that's work stuff! I've never been the type to miss work stuff!), there was funnel cake and lambs and gyros, and there was the tradition of the thing. I scheduled my deployment to fit around MDS&W, for crying out loud.

Honestly, though, this weekend was pretty fantastic. Sam guessed I'd be feeling pretty badly- I hate learning my restrictions, they make me feel so weak- so he went out of his way to take me around to all of my favorite things this weekend. I don't know if there are words for how wonderful it is to have a partner who can step in and seamlessly help me focus on feeling normal when everything seems off, but I'm damned grateful for him.

We went to Cosmic Comics for Free Comic Book Day, which is going to be our new way of celebrating the arrival of spring, I think. Sam and I both won prizes in the raffle, and all my back issues of House Of Mystery came in. We ate at Kelsey's and reviewed wedding photos together, picking through our favorite shots of Melissa and Rob. There was a pint or two of Harp involved, and in the evening we planted things. I have a black thumb, but I sure love planting things.

 

 

And Sam gave me a banjo, people. A banjo! If that isn't love, I don't know what is.

   

 

A banjo! I think her name is Emily, although we're still working it out. My poor husband and daughter will have to listen to me plinking away at this for the next... well, ever... until I get it figured out. I played guitar in high school, and bass later on, so hopefully I'll be a quick study. For Sam's sweet sake, at least.   

So- long story short (too late, as ever)- my weekend was amazing and unexpected, or unexpectedly amazing, despite missing sheep. How was yours?

Monday's list of very good things, even better

 

Broken out here, as ever. Holding the page down is my new flask. I wish you could see it better- it has a giant squid on it. A giant squid! Giant! Squid! You can see another like it here. I love it.

Speaking of love: Sam and I went to meet with his vascular neurologist this afternoon. We've been waiting for this appointment for about four years now, I think. It's an immense relief to be able to say that finally, finally, finally, he has a clean bill of health. The doctors have declared him healthy- no more clot, no major vascular or clotting disorders, and no more Coumadin.

That's all I really have to say, today: the best thing that has happened in 4 years happened today.

 

in which the week gets better, and not just because it rather had to

 

We're busy over here, packing for Stitches South in Atlanta this coming week. I don't know how communicative I'll be while we're there, but I'll give it my best. I've spent the weekend pouring through my outfits, trying on corsets, trying to decide which pieces of taffeta frippery will pack best and realizing that it really doesn't matter. All hotels have irons in them these days, right? 

Outside of packing ad preparing, though, there's been some fun. We spent some time making fun of our smart- phone addictions. There are three iPhones in this picture, and that's not counting Pamela's Blackberry, which was taking pictures for Twitter at the time. We are information addicts. Oh, or my own iPhone, tucked in my pocket. I remember a time when I couldn't understand why anyone would need a portable phone at all. Hm.

This week also brought about the end of a long- standing mystery, which was wonderful. I'm usually so let down when one of my Great Mysteries is solved- those un- Google-able things that you puzzle over for months. I usually prefer the things I've imagined to the real answers, which are generally far less exciting. This, though, wasn't a let- down at all.

 

 

We've been acting like children a lot in the house- I've been chasing Kiddo around the kitchen pretending to be a love zombie, or running our dogs around until they collapse. Or, in Hugo's case, hide in the bottom of the cat tree.

 

 

The best part of this week, though, began in the grocery store. We found Magic Grow Sea Beasties. Do you remember those? The giant colorful capsules that turned into sponge critters in hot water? I always wanted to take one like a pill as a child, although now, I think that would be pretty gross... but I'm still tempted.

 

 Look at all the options! We only allow ourselves to "release" two of them a day, and we pretend it's all very scientific at the time. Me, I'm waiting for the giant squid. Or the octopus, that would be pretty rad. Kiddo is waiting for the manta ray and Sam just likes flicking water on everybody.

 

 These things are so cool.

 

 

That's really all that's happening, lately. I still don't have a banjo- not for a lack of looking, or desire. I have this feeling that the right banjo will come to me, or something. My Banjo Destiny. Maybe I should check Atlanta's Craigslist? Atlanta seems like a great place to find a banjo.

Long story short- too late, again- the week got better, just as we'd suspected it might, and next week looks pretty good, too. Atlanta, here I come. I hope you're ready for me.

 

 

a photolist of Very Good Things

There's no written list this week- my Monday spun out of control too early to make one. The morning was fine- Kiddo was pleasant and cheerful, the weather was crisp and promising, the coffee just right. We got her to the train station just fine. There were no mangoes at Wawa for breakfast, but the pineapple I got was just as nice. It wasn't perfect- there were some problems to manage- but they all seemed pretty manageable at 9 am.

I went to the studio, looked at fish, ooh-ed and aah-ed over pregnant cats and potential kittens, tried on some garb.

Meanwhile, in Baltimore, a stranger walked into my house. Most of the Baltimore studio team was there, but they were working in back. Dave came in to take Hugo out for a walk, and caught the intruder coming out of my front door. He chased him, and the guy disappeared into or near a house up the street. Just barely up the street, by the way-  two houses from where we sleep. That's probably the worst part.

Someone came out of the house and threatened Dave, telling him that if the cops came to that house, they'd come to mine.

Oh, Baltimore.

Nothing was taken. No one was hurt. The police were polite and as helpful as they could be. It was still scary as hell. I'm sitting here with a bat to my left, listening to my neighborhood and generally feeling rather unsafe. So- no list this week, even though I could use one. Instead, a collection of images taken or grabbed throughout the week that make me happy. They're mostly cell phone photos, but I'm guessing you'll understand.

First, the Hugo-normous.

 

Fresh butter from our milkman this week. We take weekly delivery of dairy, bread, eggs and some meats from South Mountain Creamery, and we just love it. It really shouldn't be this weird to see a single ingredient listed on a label, but it's wonderful, too.

 

 

Then there's this image of Noelle, sent to us from Dave. It's hard to explain quite why this is one of the best parts of last week, but trust me, it is.

 

 

There was lunch last week at DiPasquale's, this absolutely amazing Italian deli in Highlandtown. (There's one in Towson, too, but I can't be bothered to go that close to Towson Town Center.) Their roast beef sandwiches are every bit as good as the best place back home. Possible even better, actually. It smells like home and happy and deliciousness.

    

I picked up my box contents at Cosmic Comix this weekend, too- the latest issue of The Boys. I love Cosmic Comix. They're girl- friendly, bright and well- organized, and located next to my local yarn shop (Cloverhill Yarns) and my yoga studio. They're also right around the corner from Appalachian Bluegrass, which sells banjos and gives banjo lessons. Hm. More and more, I seem to be convincing myself to move to Catonsville. Anyways- forgive the crap photo- I just wanted to capture the "Batman Wins!" sign.

 

There's also this incredibly bizarre image I found... somewhere... last week. I don't remember where. Probably Twitter, given how random this is. I have no idea what it is, or what is happening here, but if anyone knows anything about it I'm willing to offer a reward for the end of all this suspense. This is currently my phone's background image.

 

From Monday, a picture of my butt. More specifically, my butt in the bottom half of the late 1800s, smoke- grey dress Gryphon is making for me. It rustles when I walk, it is gorgeous, and it's not even done yet.

 

Finally, a goblin, brought to visit the studio for the day by Noelle. Isn't he perfect? He comes from Goblin Road, he has handspun hair, and I think I need one of his siblings to come live with me.

 

Long story short (too late!), it hasn't been a bad week. Yesterday was crap, but I think we'll be back on track soon. Be safe, everyone.

dogs and lists and positive thinking

 

 

Oh, I am so behind this week. Behind on everything, from my LoVGT (List of Very Good Things) to my laundry to a class I'm supposed to be taking online, late on finishing everything, late on starting anything I'd planned this week. Agh.

I'm making new lists of things to do- and simplifying them, this time. Trying to carefully determine how much can and should go into a day.

Speaking of lists: my very, very late list of things that are good:

 

 

 (Broken out on Flickr, like always.)

There is a lot going on right now- changes to the house, changes in routine and ritual, classes, yoga (I signed up for a set of classes at a very nearby studio, so excited), puppies to train.

Wait, did I say puppies? I meant puppy. This puppy, and to hell with self- restraint.

 

The camera use around the dogs is constant and epic. I keep trying to photograph the two of them playing together, but they're too fast and it all comes out as a blur. I did managed to catch one of poor Lilu after a play session, though.

 

 

  

(What's that line about sleeping dogs?) The longer we have a puppy, the more I come to realize that Lilu is older than I'd really thought about. She's about seven years old, which is about middle aged for a Rottweiler, even a tiny one like our girl. She's incredibly patient about Hugo crawling all over her and chewing on her face, but he wears her right out. Just looking at her trying to keep up with him wears me out.

I try to be sweet to her, and take her on walks, and be patient when she insists on tearing up my new door trying to eat the mailman or the milkman or the UPS man or, well, anyone how doesn't live or work here. You only get so many days. I think about that a lot- about the amount of days/ hours/ minutes we get, and how we never really know what that number is, and how that's probably a kindness. If I knew how many hours I had, I'd probably spend 15 minutes calculating how many I'd spent in a job I loathed and then I'd spend at least another 45 minutes being angry about it. Possibly more.

That's one of the nice things about MS. There aren't many, but this is one of them: I'm constantly aware that things could be very different for me, that they might end up very different for me. It might be sudden, or it might creep up on me, or it might not even happen at all. All that uncertainty, especially after a full year of uncertainty- helps me stay closer to the moment. Things are good; I should focus on those things, and how good they are. Next year I might not be able to have sore knees from running. I probably will, but who knows? There's no use eating up my minutes/ hours/ days worrying about that, but I'm definitely more conscious and careful to enjoy things. I used to let so much pass me by. It's nicer this way.