Tuesday, September 28, 2010

After the bomb

(I just went back and checked -- Mr. B died just 20 minutes after I posted my previous post.)

Mr. B and I both are (were?) avid fans of science fiction/fantasy books. He tended more toward space opera things with lots on interesting world-building and aliens and ships and adventures where lots of stuff happened. I liked those if they were cleverly written (I'm looking at you, Lois McMaster Bujold) but my favorites are typically stories set in our world, or not-quite our world, with richly-drawn characters and relationships. But my most favorites are post-apocalyptic "after the bomb" books, as we used to call them way back in Cold War times. Stephen Kings' The Stand, for example, or even the Left Behind books which are fascinating when read from a sci-fi perspective.

Anyhooze, that's where I am right now: A post-apocalyptic, bombed out world where the survivors have to scrabble and scramble to survive. Something catastrophic happened and the whole world changed in an instant. It was just a week ago we returned from our three-day cancer retreat (now that sounds like a fun time, doesn't it?) and met with hospice.

Yesterday was a flurry of activity which made it super-easy to stay in left-brain mode. The Ex went with me to the funeral home which was easy-peasy, really, since Mr. B and I tend toward the minimalist in that regard. Sister flew in to stay with me, and Evil Twin was finalizing preps to come, too. The 'durable medical supply' place came to take back the, ahem, 'day bed', etc. There were phone calls and emails and Facebook communications to take care of. I was running on four hours of sleep, and I was grateful for the buzz of exhaustion.

But last night after Sister went to bed and I was shutting down the house for the night, I looked over my shoulder into the now-empty dining room where Mr. B had lain a scant twenty-four hours ago, where Pal Peg and I helped him finish up the hard work of dying and letting go.

The hard candy shell of uber-competent and strong caregiver/problem solver I had constructed around my gooey soft inner core cracked wide open and everything started to leak out. I sat in the middle of the empty floor and wept. That's the first time I felt the Mr. B-shaped hole in me.

It was the first time since his diagnosis a scant three months ago (THREE FUCKING MONTHS!!) that I simply sat and cried to the point where I couldn't stop myself.

I know full well that as the hubbub fades and I have to reconstruct a daily life from the rubble, that Mr. B-shaped hole is only going to get larger and larger.

The world is now Mr. B-less, and that's just so wrong, on every level. Wow. It looks like my tag "Strange New World" has just taken on a whole new meaning, hasn't it?


Sunday, September 26, 2010

Quick update

Things have gone so fast... he's unconscious now and has been most of today. It looks like he may be gone tonight, maybe tomorrow. My Pal Peg is with me and we're standing watch, or vigil, or whatever.

Thanks for all your kind wishes. It's surreal but peaceful, and that's all I was hoping for.

Saturday, September 25, 2010

Time flies...

Did you know a lot can happen in a week?

A week ago, Mr. B was walking (albeit unsteadily) and conversing, and hugging, and eating (albeit not a lot). I was working full-time and he was able to stay home alone.

Today, he is doing none of the above.

He can still stagger from the 'day bed' in our former dining room around the corner to the bathroom, or over to the recliner, but that's about it. He's no longer interested in even a few sips of smoothie or milkshake -- his only sustenance for the past week -- but he has had a few sips of chai tea with soy this morning. I have gone in to work for a few hours here and there this past week but as it stands now I won't be going in much, if at all.

I had kind of envisioned that this final phase of life would be full of heartwarming, intimate moments of connection, saying things to each other that would stay with us always, and stuff like that.

That's not quite the way things seem to be working out.

He's gone almost completely internal at this point, and any stimulation that comes from outside (including me) seems to be a distraction from whatever he is doing inside to get ready. As he retreats further inward, the slight-yet-always-present undercurrent of stubbornness I've always felt running through him is coming closer to the surface.

This morning he wanted to move from the day bed to the recliner. I cleared a path through the living room and pulled out the walker hospice sent over. When it was time, he insisted on going through the kitchen around to the recliner, through the one doorway in the house too narrow for the walker to fit.

Guess he told me, huh?

I ask him what he wants or needs, or try to tell him about what's going on with the day, and he gets restless and whispers he feels he's being "talked at". But when I say "I love you," he always replies "Love you, too." I'll take that.

Everyone tells me I'm doing a good job and that does help, but I still feel like I'm not giving him what he needs. Then again, maybe whatever he needs, it's not mine to give.

There's a booklet hospice gave us called "Journey's End: A Guide to Understanding the Final Stages of the Dying Process." I finally managed to make myself read it the other night, and I'm glad I did. It left me with a much more, well, sacred image of what he is working through right now. I actually feel I've been entrusted with the task of getting him through this as peacefully as I can.

Have I mentioned that this is The Hardest Thing I've ever had to do in my whole life?

Saturday, September 18, 2010

So here's the thing...

Things have not been going well around here. I suppose it's time to stop vagueblogging and catch you all up.

Long story way short, Mr. B has been losing serious ground for the past month, and since he only sees the oncologist (way over in The Big City) every three weeks, we haven't known if the chronic problems (nausea, fatigue, cognitive changes, etc.) were side effects from chemo/radiation or... whatever.

Yesterday was his follow-up appointment, three weeks post-chemo. I headed in there determined to get my questions answered. I should have realized I was setting myself up for a classic case of "Be careful what you ask for."

The doc asked Mr. B some questions and poked and prodded. Took some notes. She did not offer a prognosis. She did not mention any further treatment. As she was making moves to wrap up the visit, I asked for the prognosis, and she told us.

One month, maybe two.

She said "It's* a bad disease, and you've got a bad case of it."

So it's time to call hospice. No advantage at this point to trekking all the way over to The Big City, so it's time to find an oncologist close to home to babysit us. And we absolutely have to get those freaking papers finished up, the POAs and Advance Directives and all that.

(Safety Tip: PLEASE get all that living will shit done now. Having to have those discussions once someone is really ill is THE WORST. Much easier to do when it's all theoretical.)

I asked the doc how the disease typically progresses at this point, and she gave us a few scenarios. I asked what we are to do in any of those cases, because my instinct would be to call 911, and she indicated that not dialing 911 is the right thing to do.


But that's the beauty of getting hooked up with hospice: We call them instead and they can help us through.

Through my superior people-reading skills (snort!), over the past few months I had gathered that, despite what she was saying, she wasn't being real aggressive about offering treatment. I am irritated that she wasn't more forthcoming at our last visit. Or the one before that. However, from what she said yesterday, most people don't want to know so she doesn't volunteer that information.

Really? How could someone not want to know? I don't get that at all.

Anyway, there it is. I suppose our goal at this point is to celebrate our first anniversary in November.

In the meantime, we get to figure out how this is all going to work.

* Stage 4 melanoma, in case I've been too vague about it. Yes, he went from getting the all clear in June 2008 and July 2009 to Stage 4 this past June without passing go or collecting $200. WTF is up with that?

Monday, September 13, 2010

Bad influence

True confession: I am teaching Sweetie some habits I will probably regret.
  • I find it hilarious to get her to howl when we hear a siren. All I have to do is throw my head back and go "OOoooooOOooo...", and after a couple of seconds she joins right in. It's awesome, mainly because she looks so guilty doing it.

  • I encourage her to chase squirrels on our evening walks around the neighborhood. I have her on a leash so she can only go so far, but she is a greyhound so I figure it's probably the high point of her day.

  • Sometimes, when I go through a drive-thru to get my vat of Diet Coke, I buy her a plain burger. I don't do it every time, but she's already starting to get the clue. The look on her face as I toss the burger over my shoulder is priceless!
What can I say? I'm a Bad Mom.

Wednesday, September 8, 2010


Golly, has this ever been a tough week! I thought the last couple were rough, but this one is turning out to be a real ball-buster. Thankfully, nothing significant has happened IRL but I still keep finding myself on my knees, and not in a good way, either.

I can't even think of a flip way to sum it up. The only word that comes to mind is 'heartbroken'. I am walking around heartbroken, every day, all day. No matter how I try to frame it or work it out, I just can't seem to get past it.

My heart is broken.

I found myself in the grocery store at lunch today, fuming because they had yet again hidden the garlic, and I was almost overcome by the urge to throw myself on the ground kicking and screaming like a four-year-old. Don't these people realize that my heart is fucking broken? How can I possibly be expected to play their passive-aggressive little game of "Find the garlic" when I'm walking around with a bruised, dripping mass of hurt in my chest?

I've had some sucky times in my life, but this is the hardest time I have ever had to live through, by far. The suckiest part is that there is absolutely no guarantee that it will pass any time soon.

Suck it up, Buttercup.

Friday, September 3, 2010

The Universe 'n' Me

I think I've just found the name of my sitcom! You know, for when someone in The Biz decides they want to create a sitcom out of my life...

Never mind.

I have an interesting relationship with the universe.

It's taken me a good 30 years to figure it out, and I feel pretty confident that my (sometimes inconsistent) model of The Way Things Are works for me.

The upside of my particular belief system is that when bad things happen, I don't feel I'm being punished. Shit happens, you know? We all have to learn to deal, strive to do the best we can with what we got, and let go of the rest. The downside is that there's no one "up there" (or "down there") to blame things on.

But sometimes (and don't tell anyone, OK?) I do like to imagine my Mema is sitting on top of a cloud watching over me, and sometimes I do like to tell myself the universe is rewarding me specifically. Take, for example, the past few weeks.

Life has been rough. Many FGOs (Fucking Growth Opportunities) have come my way. Some of them I have handled gracefully; others, not so much. It's been very hard. I often wonder if I'm doing the right thing. I'm drag-assing, whining every step of the way, but I'm persevering.

So then these random acts of squee! start happening.

First, after a particularly crappy day, I scored some major great deals on plants I had wanted for the back yard but couldn't afford to spend big bucks on.

Thanks, Universe!

I'd been dreaming of a fancy-pants blender. I've been making a lot of smoothies using my trusty stick blender but I figured it would be nice to have the right tool for the job, since I was caring for sick people and all. However, the top-rated brands cost a LOT of money! So every few weeks I'd pick up the notion, look at the reviews and the price, and set it back down. Stalemate.

One recent Sunday I was wandering around Costco with my ten pound box of oats when I saw it... a blender demo in the center aisle, one of the two brands I'd been eyeing. I was drawn to it like a magnet and stood through the entire demo transfixed. My $6 Costco trip blossomed into a $400 Costco trip, but I didn't even care. The universe had made the decision for me. And, BTW, the blender ROCKS!

Thanks, Universe!

Last week I picked up the mail from my post office box and found a mysterious check, seemingly legit. Turns out it's from the settlement of a class action lawsuit by employees of, ahem, a large discount store chain against said large discount store chain. Five years ago I worked there for nine months. The check was for a thousand bucks.

Thanks, Universe!

Lovely Daughter came home bearing her defunct Macbook. It had had a teeny splash of liquid spilled on the keyboard and was behaving inconsistently. She had been told that because it was liquid damage, it would cost almost as much to repair as it would to buy a new laptop.

I decided to take it in to the local Apple Store just to see. Well, as it turns out, there were some chips in the plastic around the keyboard that qualified it for a FREE keyboard replacement. All better! For FREE!

Thanks, Universe!

And that, my friends, is the beauty of subscribing to the Burger King(r, tm, whatevs) model of spirituality. Sure, it's inconsistent as hell, but I can have it my way!