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?

Fuck.
 

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.
 

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?

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.

Yikes.

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?
 

Uppercut

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.
 

It's all relative

The highlight of this week is that Sis finally did get her final diagnosis, and it's Not Great, but at least it's not Very Bad as we had feared. The five year survival rate for her condition is 50%.

Here's a perfect example of how fucked up my life is right now: That that counts as Very Good News. As Mr. B so succinctly put it, "I'd take a 50% survival rate right now."

That, of course, made me think of this...



"Oh, we used to dream of living in a corridor..."
 

Mythbusters Moment

One thing I love about Mythbusters is the notion of Mythbusters Moments. The Mythbusters team will be setting up some usually complicated test to prove or disprove some really oddball piece of common 'wisdom', like whether droplets from a sneeze will really travel thirty feet, and the absurdity of the moment will strike someone, who then looks into the camera and says "What in the hell are we doing??"

We've had several of those around here in the last six weeks or so, but the best so far was when Mr. B started taking his chemo, Mr. Yuk-colored capsules with Extremely Dire Warning Stickers plastered all over the bottle.

The instructions warn NOT to TOUCH the capsules with ones fingers; rather, shake the capsules into a small cup, then dump them into ones mouth and swallow. NO CHEWING ALLOWED!

Mmmmkaay....

So, whatever you do, DON'T TOUCH THEM, but please do feel free to put them in your mouth and SWALLOW them.

Riiiight.
 

Normal, new & improved!

I thought Mr. B's diagnosis was rough enough, but his sister, who moved to town last year, also just got a Very Bad Diagnosis. So, as Mr. B and I deal with his stuff, we are also trying to help Sis as much as we possibly can.

Stress, much? Let's just say it's a full life.

I'm alternating between Control Freak Mode (working myself into a lather trying to anticipate and solve every single possible upcoming problem) and Withdrawal Mode (curling up in a ball in the corner, paralyzed by the conviction that nothing good will ever happen again). I'm hoping there's a happy medium in there somewhere. Happy, hell; I'd even settle for a tolerable medium. I don't think there's enough diet soda in the county to help me reach a happy medium.

But, as with any major crisis, the initial wave of shock and awe passes. The survivors scrape up whatever's left and start piecing things back together into some semblance of normal, trying to figure out what 'normal' now looks like. We have kind of settled into what passes for normal these days. Even though we know more THINGS are going to happen at some point, we can't do dick about it right now. Except wait.

So wait, we will.

In the meantime, we're scraping together what we can, going to work, and trying to get stuff done. What else can we do?
 

Mama's little helper

OK, so you've probably gotten the sense that The News was pretty bad. Yeah, it's freaking scary, and we are getting a sense of the full scope of the problem but we don't yet have all the puzzle pieces fit together to figure out WTF it all means. We are now smack dab in the middle of one of those weird times where nothing seems real and it is almost impossible to remember that everyone else is just chugging along with their daily lives while we thrash around helplessly in the muck, our toes scrabbling desperately for a hint of something solid.

I have already learned some interesting things, though. Did you know that when someone in your household gets a really bad diagnosis, one that has the very real likelihood of being life-threatening, you still have to go to work and talk to customers on the phone and care about their problems? And, you still have to go grocery shopping and feed people and take out the trash. And those flower beds don't weed themselves, you know. And if you don't keep up with the housework (read: you don't have the cleaning lady come often enough) your son will break out in hives from his low-level dog allergy, which makes you a Very Bad Mom on top of everything else.

Who knew? I can't say I think it's fair. I always kind of assumed that when something happens that FREAKS you the hell OUT like that, you get a "Get Out Of Shit Free" card. Well, mine hasn't shown up in the mail yet.

I have to confess that I have discovered how weak I really am. I have found myself self-medicating on a regular basis. It started out fairly innocently, just once or twice that first week when things were super fucked up, and I swore that I'd stop as soon as we found ourselves on solid ground, but I'm afraid it's turned into an almost daily thing. I rely on it now, even after I swore earlier this year I was done for good and I'd never take it up again.

Yes, I'm drinking diet soda again. And not the stuff in the cans, either -- it's gotta be the stuff from the fast food places on ice. Sometimes I even get a large, which doesn't even fit in the cupholder of my car and takes two hands to maneuver.

Of course I'm ashamed of myself, but it's not enough to make me stop. I know my body will pay for the chemical abuse I'm heaping on it, but I don't care.

I need it and it helps, if even for a few minutes.

Then again, if that's the worst habit I pick up during this, I think I'm doing OK.
 

Stop that, stop that...

Well hell. I was all geared up for high drama on Friday but we didn't get it. I can only conclude that the folks at the clinic work VERY HARD to deflect any hint of high drama*, damn bless their consummately professional hides.

Current word is that there is very little doubt about what IT** is, but there is lots of head-scratching about how IT got so far out of control, since we got the official All Clear twice. So there are tests to be done and results to be studied before we find out what's going to happen and when.

How orderly and anti-climactic is that? I appreciate their professionalism, but as anyone who has had to wait for a definitive diagnosis can attest, WAITING SUCKS BALLS.

Ahem.

While we're waiting for something to happen, I thought you might enjoy a peek at my first few thoughts after I heard The News almost two weeks ago. At the time I didn't even notice they were, uh, a little out of character, which makes it even better:

• I really needed a cigarette. (I haven't smoked in 30 years.)


• I got really annoyed with my hair and decided to cut it all off. (I just spent a year growing it out.)


• I felt the urge to get a tattoo. (WTF??)


• I wondered if I know anyone who sells weed. (Decided I probably don't.)

So when my psyche gets shoved against the wall, I turn into a sixteen-year-old. Fascinating.

I managed to get a grip and channel my urge to act out into a somewhat positive direction -- I bought Mr. B an iPad last weekend. Let me tell you, that is one cool toy. If that doesn't make him behave in the doctor's office, nothing will.

I estimate we have another week or so of floating in null space before the shit hits the fan. That should give you plenty of time to get your riot gear ready.

*<Insert Tale of Sir Launcelot joke>

**<Insert Knights Who Say Ni joke>

(Can you tell we recently watched Holy Grail?)
 

Peeking over the edge

Have you ever had one of those moments when you realize that whatever is about to happen in the next few minutes or hours could change your life forever?

Sure, with the luxury of hindsight, we can look back and recognize all sorts of decisions that changed the course of our lives -- like the moment I decided to send Mr. B that first email -- but at the time we didn't have a clue that anything out of the ordinary was going on.

But those stomach-wrenching moments when you are well aware you are walking up to the edge of a cliff with no idea what will happen when you take that step over the edge... those are a whole 'nother thing. Like, say, the morning of your wedding. Or when you feel the first pang of labor. Or even when you pick up the stick you peed on ten minutes earlier and slowly turn it over.

Anxious, much?

In half an hour, I am going to leave work to catch a ferry to catch a cab to the Highly Regarded Cancer Treatment Center where Mr. B and I will be told what in the hell is going on.

After that, who knows?
 

At least I'm enjoying the ride

Wow - what a WEEK I'm having! It's been rough, but yesterday the sun finally came out and the temps approached 70 degrees. That made me happy. I also realized that it was about a year ago that Mr. B and I set our wedding date. That made me happy too.

Despite that happy occasion, Mr. B said the other day that June is shaping up to be his least favorite month. I pondered that, trying to place his surgeries, etc. in order, but my memory is crap. I had to go through the blog archives to remind myself what happened when. I then created this handy info-graphic to put it all in perspective. Sure enough, June has been in the bottom of the curve for the three years running.
 

LEGEND:

A: We're dating! Yay!

B: The dermatologist found what?!? OMG! But it's OK, just got to cut it off. Oops, missed a spot -- there. All better.

C: We're moving in together! wOOt!

D: What's that thing on your head? Shit, here we go again. It's still OK, though - just gotta make another scalp donation. All better.

E: We're married! Yay!

F: Ruh-roh...

Seeing it all laid out like that really drove home what a freakin' roller coaster ride the last three years have been, and I'm not even going to count my own little health hassles.

Here's some food for thought: A few months ago Blogger stopped FTP support for self-hosted blogs so I moved my family blog back to Blogger. I had started it since way back in 2004, right before the 25th anniversary of my first marriage. Lots of ancient history there.

I figured since I was now newly-remarried and all, it was a good time to do some housecleaning. I changed the blog name and the tagline, and even chose a new template. I wrote the tagline without even thinking, just as a placeholder, really. But looking at it now I think The Universe was trying to tell me something:

"It's all fun and games until it isn't. And even then, it tends to be fairly interesting."

Heh. Interesting. Yeah, that fits.

Interesting or not, I keep staring at that graph, hoping the pattern continues and we see the red line swing sharply upward in a few months.

Fingers crossed, 'k?
 

Top Five Reasons Today Sucks

5. Fifteen hours, fifty-nine minutes, and thirty-five seconds of chilly, damp, gray daylight. The temp just broke 60 degrees, barely. Thanks, solstice.

4. The soles of my feet hurt for no reason. WTF??

3. Left the house extra early this morning to do a pain-in-the-ass errand on the way to work, only to find that approximately 40 people with the same idea had queued up ahead of me. Had to bail out and head to work early. I hate showing up at work early because I don't get extra points for that. Plus, now I have to leave work early to see if I can get 'er done before the place closes.

2. Walked in to the office to find one of the servers had died, at the ripe old age of twelve years. Managed to shunt most functions to another server, only to have the mail server crap out. Took me three hours to find out that the antivirus software had blocked port 25 all of a sudden for no good reason. This was all complicated by the fact that I have no idea what I'm doing.

1. Oh, and we found out Thursday, about an hour after my last blog post, that it's baa-ack. And it's not going to be a relatively easy cut-and-run kind of deal this time either.

FML.

On the plus side, if you like hearing me whine, there's bound be be quite a bit of it in the near future. Cheers!
 

A way to skin a cat

Poor Mr. B. Because of the M-word, he has to go for a skin check every three months. That in itself is no big deal, but at his last appointment the dermatologist told him he had to shave.

(His beard, people.)

Even the beard is not that big of a deal. He only grew the beard at my request last year. It's the mustache, see? He really, really doesn't like not having a mustache. I don't know how long he's had a mustache, but it's been some years.

We had a little discussion about it when he first brought home the news. He was sure they wouldn't mind if he left the mustache. I voted for a clean shave; after all, it would be really embarrassing to end up with melanoma of upper lip because he didn't shave the mustache.

Last night, with a heavy sigh, he trudged upstairs to do the deed. When he came down and rejoined us in the living room, I'll admit it was a bit of a surprise. Young Son was completely taken aback and pretty much ordered him to grow it back immediately. I wracked my brain trying to remember if I had ever seen him IRL with out a mustache. Verdict: I don't think so. He's fortunate he is not one of those guys that has to wear facial hair to conceal some less-than-optimal facial structure, but it is definitely a different look.

He said it was no big deal -- that he was fine with it -- but his body language did not confirm that. He was not displaying a relaxed and happy demeanor last night.

In fact, this morning I realized that his expression reminded me of nothing so much as a dog wearing one of those plastic 'don't lick it' cones. You know, that "What did I ever do to you" look.

He's at his appointment even as we speak. In fact, I expect the beard-regrowing has already commenced. Young Son has decided it will be a science experiment: He wants to find out how long it will take to fully return. Current prediction is that by the end of September, Mr. B will no longer be wearing the plastic cone.

And let's hope that's the most we have to worry about.
 

It's getting better all the time

Not so much

Well, apparently Percoset also makes me forget the Fridays Rock! post I promised you. Sorry 'bout that.

I'm back at work today, trying to shake off the remnants of The Week We'd Prefer To Forget, If It's All The Same To You. A week ago today, we were driving back from our long, lovely weekend at the shore. Then all hell broke loose, I lost a bunch of days (I do vaguely remember writing a few blog posts), and yesterday we found ourselves back at the LHRMI so Mr. B could participate in their annual Scalp Collection Drive.

I'll spare you the play-by-play, but we left home at 5:50 am and returned ten hours later with Mr. B looking like he was hit by a bus. Seriously. He looks like a cross between Massive Head Wound Harry and, as he puts it, 'someone's aborted attempt to construct a Borg in their garage.'

I'm not sure what's more impressive, the 3" wad of sponge STAPLED TO HIS SCALP or the 4" x 12" strip of skin missing from his left thigh. Hell, in comparison with that carnage, the wounds from the four lymph nodes they removed down the left side of his head and neck are hardly worth mentioning.

He even let me take pix, which I will link to as soon as I get them posted somewhere*. I didn't think it was fair to spring them on you without warning.

I'm emotionally exhausted, physically sore, and probably suffering the ass end of a drug hangover. I'm resisting (so far) the urge to curl up in a ball in the corner of my office and simply disappear for a few weeks. That space right between the bookcase and the back wall would be perfect.

*Update: I'm going to keep the photos private, but friends and family can email me if they want a link. There are two pix and they are relatively, ahem, tasteful.
 

Wide-area excision 101

It's Arts and Crafts Time here at AIWJT!

Cut an approximately 2" circle out of paper, then place it on top of your head. Then imagine a surgeon cutting that much of your scalp out. It will be deep, too, at least 3/8" deep. All the way down to the muscle. There's a lot more meat on your head than you think!


This time Mr. B's going to have a skin graft, which should make it easier to deal with although rumor has it that his thigh will probably hurt worse than his head.

Last time we healed up the excision site the slow way. It took about three months, including a major setback at the one month point when they had to go back in and remove a 1/4" ring of the freshly-grown skin because of a 'rogue cell' in the pathology report. I got really good at cutting appropriately-sized circles out of hydrogel and dropping them into the abyss.

We don't have a date yet but I'm hoping for mid-June. I'm going to try to take a before pic (if he'll hold still) and an after pic (if he'll let me.) I was miffed last year that he wouldn't let me photograph the healing week by week.

Is that weird? Don't answer that.
 

Call to action

Today's the day things start happening.

This afternoon Mr B & I return to the LHRMI where we will learn how much they're going to cut off the top of his head this time. We will also learn whether they have any other special activities planned for us him.

We're going to get dinner out after and I'm guessing there may be Adult Beverages involved, possibly even one apiece! gasp!

Also, I made an appointment for an initial consult with the dyslexia-tester guy, three weeks from now. Pinning someone down and having an appointment set is a big relief.

Now all I have to do is find a renter for my house and finish up PT and everything will be perfect!

Everything will be perfect, right? Guys?
 

So much to look forward to

So a week ago Sunday, I noticed a Thing on the top of Mr. B's head, which is not as easy as it sounds as he has a good 9" on me. Fortunately, he was sitting down.

"How long has that been there?"

"I don't know, it just kind of showed up. Maybe a week ago?"

"I don't like it. Can you call the dermatologist tomorrow?"

I really didn't like it, not one little bit. As we are both of primarily northern European stock, we both have pale flesh covered with spots in a variety of shapes and colors, but I had never seen a Thing like this one. From the way it looked at me, I don't think the Thing liked me either.

So he called the dermatologist Monday morning, even though he was busy getting ready to leave for a week-long trip on Tuesday. They couldn't get him in that day so they booked him an appointment for the 21st.

So he calls me and I'm all, like, 'they couldn't get you in any sooner?' and he's all, like, 'no'.

So of course I email Evil Twin to whine about the Thing and that he couldn't get in for a week and a half and waah!

So she emails me back and basically slaps me upside the head. She's all, like, 'he's not canceling the trip? what do you mean he's not getting it looked at for ten days? WTF?' and I was all, like, 'duh!'

So that's when the light dawned: I bet he didn't tell the appointment clerk that he had melanoma a year ago.

"I'm really feeling twitchy about you not getting the Thing looked at for ten days. Did you tell them that you had melanoma?"

"No."

So he calls the dermatologist and a short while later there's a txt msg: 'Appointment at 1500.'

So he goes to the appointment and they take off the Thing to send to the lab, give him two stitches, and send him on his way. I asked if the temperature in the room dropped ten degrees when they saw it, like it does when docs see something they really don't like, but he said no, their guess was it was just a plain old seborrheic keratosis, which is harmless.

Well, OK. I have those, and they don't look like that. I'm uneasy, but hey, dermatologists see those things all the time. What do I know, anyway?

So the next morning he heads off for his trip. La-la-la-la...

We chat throughout the week. No big. Friday afternoon the phone rings.

"Hey, how are you?"

"Not good."

Whoa. All stop. In Mr. B-speak, that's the code word for 'OMFG! Something horrible has happened!

The dermatologist called. It was not a seborrheic keratosis. It was the M-word.

Fuck.

There are damned few times in my life I wish I was wrong (I hate being wrong) but this is one of them.

Here we go again.
 

All Clear

I think I forgot to make the official announcement. I'll take this opportunity to present it in the style of a lovely haiku.

Mr. B is clean
No more melanoma cells
Lurking in his scalp

All we have to do is get the wound healed and eventually this whole episode will be history.

Except for that whole constantly-looking-over-the-shoulder thing, of course.