en route

I pblogged this on the plane, so here I am transcribing:

I really like this airline. This was pretty much the least-bad transatlantic flying experience I can recall. Flying is never yayfun, but this was not nearly as unpleasant as I’ve come to expect. I’d say we should ditch Lufthansa and fly SAS from now on, if that didn’t mean we’d have to fly up to Copenhagen to get down to Spain.

I made a few swaps Stateside. E.g., I found a green denim jacket hanging on the coatrack, and after much deliberation, I adopted it and left my blue denim jacket behind. Ditto daypacks. The one I brought was given to Robert by Georg – not as a gift from the heart, but as an alternative to chucking it – and it was, you know, an okay daypack. Gray. One hole. But Mom’s daypack is black (I still can’t imagine why she had it – she hated black) and has water-bottle pockets and packs smaller, so is better for traveling, so I ditched the gray one. Hope Robert doesn’t mind (note from later, 1 November: he hasn’t even noticed yet).

ANYWAY. The point of this unnecessarily long exposition is that I found a little notebook in the backpack, and it’s her “Medical Journal”. She started it in June of 2004, and it tracks the whole thing, the discovery of the tumors, her symptoms, changes in medications. Not very in-depth, it’s just notes, but it’s weird to see the whole thing documented, and to see her handwriting deteriorate over time. I didn’t follow the process, here in the blog or anywhere else, because I held onto the hope that it was no big deal and she’d get better. Right up until Tuesday, 11 October, when Dr. C called to say the tumor in her back was spreading, and we knew then that she was much too weak for anymore therapy, and she wasn’t going to recover. Not even temporarily. It really seems like I should have known sooner, in hindsight, though I can’t say when I should have realized. I just spent so much time reading about cancer survivors that it didn’t occur to me that she wouldn’t beat it.

ready to go home

Well, I guess I had my long mopey good-bye to Port Townsend. I went to see the Wallace & Gromit movie yesterday, and it was a fine movie, but I’d much rather have seen it with the kids. It’s good for moms to have Time Away From The Kids, but I’m finding that there are limits…specifically, two weeks is about as much as I can really stand. Probably not even that, actually. I spent the first two weeks here being really glad I didn’t have to take care of my kids on top of everything else, but if that hadn’t been true, I’d probably have started missing them a lot sooner.

In any case, I miss them now, and Robert too. I’m being kind of a social zero now, I don’t feel like talking anymore. I just want to go home. Red picked me up today and brought me to Jack & Mary’s house, and lots of fun foody and social things are planned, and I’m just sort of sitting around waiting to get on a plane. In about 25 hours. Long wait.

So the next question is, how will this change my blog? Mom and Kelly were my only regular readers, and now half my audience is gone. I guess this means I can cuss more.

gradually sinking in

We picked up Mom’s ashes from the funeral home today. Jerry plans to scatter them in her garden, so we didn’t need to go the heirloom-urn route. We said we’d bring our own, since it was going to be sort of a temporary thing anyway, and then the only thing we could find that was really big enough, without being a clear glass thing (that would be too much information, I think) or a plastic bucket (disrespectful) was the old ceramic cookie jar she used when we were kids. When I say “used”, of course, I mean she filled it with honey-sweetened health-nugget pseudo-cookies loaded down with sesame and sunflower seeds and whatever other nutrition-bombs she could pack in, and which we generally refused to eat, since they hardly qualified as actual cookies. I think they were low-fat too, and I know she used whole wheat flour. One of the things I will remember about Mom is how she was always trying to sneak an extra little bit of nutrition into everything we ate. It’s certainly one way to show love. So anyway, that cookie jar is now on the dining room table, with Mom’s earthly remains in it, and it’ll stay there for another few days. Apparently I am the only one who’s weirded out by that.

Hell, I’m weirded out by the whole thing. I think I’ve absorbed the fact that my Mom has died, but the collateral stuff isn’t really sinking in yet, the fact that I can’t list this as my permanent address, and who am I going to call every saturday evening now, and what am I talking about when I say “home”?

Sigh. Anyway. A little restless now, not sure what to do. I’ve bagged up the clothes and boxed up shoes and picture frames and stuff and stuff and stuff, Nate’s taking the photos and heirlooms to Denver, and he’s sorted out all the files and records. I’ve established with Jerry that the kitchen should be cleaned out by women who live around here and can take proper care of things…absorb the spices into their own kitchens instead of just throwing them away, for instance. And the dishes should just stay in the cupboards until the garage sale, it’s the safest place for them. So really I guess there isn’t much left for me to do here, except wander around and sort of say goodbye. I feel weird being here in what is essentially Jerry’s space until it sells, but I’m not sure I’m ready to go back to Jack & Mary’s in Seattle yet. I guess there really isn’t any more work for me to do here, so I guess I can go pretty much any time I want, I just don’t know when that will be.

Oh, and Gus’s birthday was today! Sounds like the party was pretty exhausting, from what Robert says. Gus had fun, though, and that’s what matters most. And now he’s five, wow, what a thought. And he rides a two-wheeler, another milestone achieved while I was gone. How things have changed in the last three weeks. I really can’t get my head around it all.

Life Going On

So Saturday was mostly phone calls and consulting with the funeral home guy. Sunday we took the ferry to Seattle and visited the stepmothers and I did some shopping for the boys. Have I mentioned that I love Target, and wish it would come to Germany instead of stupid, evil Walmart? Yay, at last decent clothes for my sons. Ooo! And we saw orcas off the port bow of the ferry!

And we’re now working on emptying the house out. Much less difficult now that Mom is actually gone, because it’s somehow less offensive and vulture-like. It’s just a job that needs to be done. A big, big job. The hospital bed and wheelchair and stuff went today – they were on loan from an outfit called ECHHO (Ecumenical Christian Helping Hands Organization – yes, Christians, helping really sick people for free, regardless of their religious affiliation, so quit complaining about them, okay?). We have to wait for the death certificate before we can arrange for cremation and talk to the lawyers and cancel credit cards and internet service and start on selling the house and all that.

There may be a buyer for the house, maybe. Nate’s wife’s younger brother is about 21, plans to stay in town, and is considering buying a house. It would be good to keep this house in the family, sort of, and I hope bad family politics don’t arise if the house turns out to be worth more than he can afford. Well, we’ll cross that bridge when we come to it. I guess my main concern has to be how I’m going to get my stuff from here to Germany. It’s not a lot of stuff, just some books and CDs and a few kitcheny-things and clothes, basically so that I have a lot of little things to remind me of her in everyday life. The rest has to be packed up and somehow disposed of. A bunch of stuff went to the landfill today, and Mom’s friends will organize a garage sale at some point, and things are gradually getting done, but the job looks pretty overwhelming right now.

Sunday was yucky, but the sun came back today. I’m glad I get to see Port Townsend in the sun. Now that Mom’s gone, I don’t know when I’ll be back here. I really love Port Townsend – yes, I hated it as a teenager, and couldn’t wait to get out, but when I came back here with toddler Kilian and was a small-town mom it was great. I know we can never live here because Robert wants to be a college professor, and that makes me sad because it really is my favorite place. But it’s so remote that without the family obligation I have no idea when or even if I’ll come back. So I’m glad I get to see it in sunshine for what might be the last time.

it’s over

Mom died this morning, a little after 8 a.m. I suppose if I were a true netizen, I would have blogged it right away, but that didn’t seem like the right thing to do, somehow.

I never really got why people euphemize in these situations – dead is dead, right? No point in prettying it up. But today I had to call people and tell them, and it was really hard to say the D-word, so I found myself using all those other expressions that used to make me wonder. When it’s real, it’s too hard to say. Awkward.

I was out of the house yesterday for about three hours, and Kate (the nurse) told Nate and Jerry what to expect, i.e., what it looks like when someone dies. It’s nice that they tell you these things, because you can’t really help wondering, but you feel weird asking. Anyway, (Nate told me later) what happens with lung cancer is that the lungs fill up with fluid, very gradually, and the person gets too weak to cough it up, and as their lung capacity diminishes, their breath gets shallower and shallower, and ultimately the lack of oxygen to the brain is the cause of death. So basically, it’s like drowning, only very slowly. So it can be kind of horrifying, and therefore it’s really good to know beforehand what to expect.

This wasn’t that bad, not as horrible as it could have been, anyway. She started wheezing around 8:30 last night, talked for about two hours and then settled into something very weird. She was vocalizing every exhalation, but not like moaning or anything so emotional. She didn’t seem to be in pain, she was just…making noise. There was no apparent suffering, no visible struggle, for which I am immensely grateful, but the noise, the vocalized exhale, continued for almost ten hours. So even though she didn’t seem to be suffering, that was kind of stressful for us, because it’s very hard to concentrate on anything, but it’s also very hard to sit by someone for such a long time.

Nate went to bed around 11, I went to bed around 1, Jerry dozed intermittently but didn’t get any real sleep. We were told that this vocalization is not that unusual, and it can last quite awhile, so Nate left for the airport around 7.45, since he was scheduled to fly back to Mississippi today. He was barely out of town when I called him to tell him that Mom had passed, so he just turned around and came back, and the rest of the day has mostly been phone calls, funeral arrangements, and that sort of thing.

It was a bright sunny day, though, probably the last nice day for awhile. The sky was blue, and the garden looked beautiful. I’m only occasionally sad today. It will come upon me gradually.

(Happy birthday to me. I turned 35 yesterday.)

waiting, mostly

Huaugh. Well, it’s getting harder to find time to write, especially since Mom’s keyboard is kind of loud and I don’t want to disturb her. I don’t know how to describe how she’s doing, partly because I’ve been here in the middle of it for so long, it’s hard to know what changed when. Also because I don’t really know how much detail would constitute an invasion of her privacy. And also because I’m not sure how to articulate what’s galloping through my head.

She’s getting weaker and sicker, the lucid moments fewer and farther between. She does wake up to ask occasionally why she doesn’t die – not in a wretched, suffering way, though. She doesn’t seem to be in pain, she’s just decided it’s time to go and is wondering why it’s not that simple, I guess.

We’re doing a lot of work on getting the house cleared out, but it’s challenging. The dust makes me sneeze, and makes my eyes itch. There’s so much that we just don’t know what to do with, and it’s weird to be throwing away things that were important to her, or that she put so much work into. And there’s a lot of just-junk lying around, but also a few pieces of genuine history mixed in. There is also a lot of genuine garbage that I left behind, so I’m scratching my head a bit over the motives of my earlier self.

Aaaand I’m staying a bit longer. Now that we know she’s actually dying, and how much there is to do around that, two weeks is not nearly enough time. She’s barely conscious, but she’s still glad I’m here. And even if she weren’t, I would not be feeling a lot of self-respect if I scampered off and left this enormous amount of work to be done by her friends and neighbors, and by Jerry, who is a lot more than either of those.

Arranging to stay longer: gack. Apparently I had a completely non-changeable, non-refundable ticket, not even for a death in the family sort of thing, and Lufthansa wanted $3000 for another ticket at a later date. Way to capitalize on other people’s misfortune, and don’t let anybody tell you that European businesses are less vulture-like than American ones, okay? I did find a decently-priced ticket at SAS, so no major harm done, but Lufthansa will be receiving a nasty letter. Yeah, I got all kinds of time for that. So but anyway, I’ll leave here on the 29th, and the general understanding is that I won’t be back, for whatever funerals and things end up happening. That it was better to be here while she was still alive, and to make myself as useful as possible under the circumstances. So I guess I better get back to work.

uncomfortable

Well, she’s started eating again, and she seems a bit more alert. Nate’s here, and we’re trying to get things cleaned up and sorted out. It’s very creepy to be stripping the house and deciding how to dispose of Mom’s stuff while she’s still lying there in the living room, listening.

We’ve been trying to make sure we caregivers get out at least once a day, but I guess I’ve been gone too much, because Mom’s complaining. This makes me feel very squeezed, and irritated. Robert keeps calling to ask me exactly what is going to happen, when will I be home, should he cancel the Spain trip, should he bring the kids out here, what? We all know what is going to happen, but nobody knows when, but he keeps asking, like if he nags me enough an answer will miraculously appear. Which is also fucking creepy, because Mom can hear every word I say, no matter where I am in the house, so my half of that phone conversation has to be heavily censored. It is nice that he misses me, and the kids do too – I rather like feeling needed – but I also feel pulled in opposite directions.

Meanwhile, Mom’s getting … um, querulous is a good word. Annoyed when I spend time with anyone but her, but I can’t watch TV – well I can watch, but I can’t listen because the sound annoys her, and today Nate and I tried to watch a football game (Seattle vs. Houston) without sound, but she got mad at us for talking about it. And I “wear her out” when I’m bustling around cleaning and organizing things. So yeah. What little shine there was on this trip is wearing off real fast.

But we talked with Jerry about it, about how much time out of our busy lives we can really afford, and I said I didn’t feel I could stay beyond the 30th of October or so. He said well, by then she will either have died or stabilized, and in either case, I can reasonably go away. Fortunately, Nate is the executor of her will, not me, so he’s the one who will have to come back and deal with stuff. Even more fortunately, he doesn’t mind.

I can’t believe how much I miss my family.

it’s hard to make plans

Well, every day we know a bit more, I guess. She continues to decline. She mostly lies on the bed with her eyes closed, occasionally says something brief, but is not very communicative. She’s not eating. I missed the nurse’s visit today, oops, but Jerry says he doesn’t think Mom will live more than two more weeks. So Nate’s coming tomorrow night, and I’ve decided to postpone my return to Germany until the end of the month. We have abandoned all thought of getting Kilian out here, it’s just too late. Mom says it will be too much work for her to interact with him, though she would like to talk on the phone with him one more time. We’ll try to do that tomorrow. I am sorry, for his sake, that he won’t be able to see her once more, but we have to consider her wishes as paramount right now. And maybe he should remember her healthy and happy, not like this.

bad day

We hoped when the Lorazepam finally wore off she’d be better, and she was, this morning, but this afternoon she was having stomach cramps and throwing up. Jerry was taking his daughter to Olympia when the trouble hit and Mom asked me for morphine. I didn’t want to give it to her, but she was in so much pain and I didn’t know what else to do. Turns out that was a mistake, one I won’t make again. The morphine is only for pain in her surgery scar, not for stomach pain, which I didn’t know. I’m feeling pretty guilty about that.

Jerry says Easter will probably be too late. I’ve emailed Robert about wanting to come out here right after Christmas with Kilian, haven’t heard back from him yet, but I wonder if that might be too late too. This is really looking pretty bad. She was supposed to do better when I came to visit, because I was going to lift her spirits. She says she’s really glad I’m here, so her spirits are lifted, but her health is still sliding.

The Tarceva prescription came in, and we read the flyer, and we’re thinking it’s not a good idea. There are a lot of really nasty side effects listed (vomit like coffee grounds? Never a good sign), and it sounds like it would be much too hard on an already weak system. We’ll talk to the oncologist about it when he calls tomorrow, which he will do because we just heard from the GP today that last week’s MRI shows that the cancer in her back has spread.

For the last few days I’ve been packing up stuff, sorting clothes, books, yarn, fabric, rummaging through papers, consolidating stuff. I’m now realizing that those were good days – I had to stay close to the house, but I could still get a lot done. Today was a bad day, and I just sat by her bed waiting for her to need something. It’s a lot harder than sorting and tidying and organizing.

Doctor visit #2…

…was cancelled. She had a restless night, but she hasn’t been fully awake since the Lorazepam kicked in, over 24 hours ago. We heard back from the oncologist about the Tarceva, it’s affordable and the side effects sound pretty manageable, so we’re going to try it for a month and see if it helps. But clearly we’re just buying a few extra months at best. She’s dying, we just don’t know how fast. A month, two months, maybe even a year.

I was planning to try to get Kilian out here for Easter, but I don’t know now. It might be too late. I have to get back somehow, but I’m racking my brain and not coming up with anything. The house needs to be decluttered and sorted and all, and the week I have left isn’t near enough time. I should spend more time with her…I dunno. Not thinking too clearly right now. I know I asked myself this earlier, if this is really it and she’s actually dying, how crappy will I feel that I only gave her two weeks? CJ said you can’t know what’s going to happen, you just do the best you can with the information you have, and that was true, then. But I do know now, this really is it and she really is dying. And she deserves more than two weeks.