Disjointed Dreams

dreaming

Up until this week, I'd had only one dream of Bob, and it was the most jarring experience. I awoke realizing he wasn't alive, as he had been in the dream I'd just awoken from, and it was like experiencing his death all over again, but at mach speed. Worst morning ever.

These dreams, this week, they're different. Sometimes he's incredibly sick, his body is broken, and he's near death. Other times, he appears briefly, not quite fitting with the story, and then, in a flash, he's gone.

I can only think it's because it's almost the one-year anniversary of his death that I'm dreaming about him more. It's like there are flickers of his energy that need to zap through my brain while I sleep to keep his memories wired in there even though I know I'd never forget him, but pieces of a person get pulled away from you when they've been gone for a while. The dreams feel like a way of tucking those pieces back in place.

 

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Battling Demons: Things That Go Bump In The Night

battling demonsI suck at sleeping. Have my whole life. I did a great sleep training program through Kaiser (my health insurance company) that worked wonders, but that was before Bob got sick and LIFE happened.

Now, my sleep is royally fucked up again. I haven’t had the energy to repeat the program, which is, ultimately, what I’m sure I’ll need to do. Until then, I’m relying on a last-resort medication and the luxury afforded to me by not having a job that requires me to work 9-5, kids who are also vampires when it comes to sleep, and a flexible homeschooling schedule.

HOWEVER, that’s not really helping my second issue, depression. When my sleep is fucked up, it feeds the depression. I don’t get enough time outside, I don’t get enough daylight hours, and the cycle turns into lather, rinse, repeat.

This ALSO works well to feed the chronic pain associated with fibromyalgia. You see where this is going? Yes. A giant pity party for which I refuse to send out invitations. UGH. I have no patience for this crap. I have no patience for myself.

My hair has been falling out at such an alarming rate, I told my doctor I’d be bald by Christmas if she didn’t help me figure this out. Fortunately, there was one big clue (in addition to the OMG has anything stressful happened in your life?), Vitamin D deficiency. It turns out that NOT spending countless hours outside and in the hot tub soaking up the sun’s rays has been a problem. Supplements have been started. Fingers have been crossed.

Now, pass me a tissue because I feel another crying jag coming on. For a woman without a uterus, I sure wish I could skip the chronic PMS. (Really questioning the wisdom of keeping those damn ovaries right about now.)

Oops. That was probably a bit more information than y’all were looking to find out about me. I’ll try to skip my pap smear and mammo results. I said I’ll try. No guarantees. It is my blog.

Psst…I’m going to post something fun over on my review blog pretty soon. Like, within the next 24 hours or I’ll turn into a pumpkin, and not one that’s been made into a pie, so don’t encourage me. Stay tuned. It might have to do with a game whose name rhymes with Must Pants Poo. And there might be a giveaway. Shhh…keep it down.

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A Procedure And A Picture, Alright Two Pictures, So Sue Me

Lets mix up this journey a little. Today we’re going to have a picture and a procedure. The procedure du jour is an echocardiogram. Bob’s going to be having a regular shit-ton of procedure in the next week in preparation for his stem cell transplant.

Another name for an echocardiogram is an ECHO. Echoes make me think of Marco Polo. The game. Not the dude. Two Saturdays ago I got to play Marco Polo in a cab in San Francisco while trying to find 150 of my nearest and dearest imaginary Internet friends. Here’s a picture of me in the back of the cab.

Playing Marco Polo in a cab 

It’s hard to find 150 imaginary friends in a big city when all you have is a bunch of iPhones and a cranky cab driver who doesn’t want to drive in traffic (WTF?), but we did it. To see proof of our shenanigans, you can peruse more of these riveting photos in the SFTU Flickr pool. No, that does not say STFU. It says SFTU. Sheesh, people. San Francisco TweetUp. Even if you don’t want to stare at pictures of people you don’t know, there are a bazillion pants-dropping  jaw-dropping shots of San Francisco taken by some of the most incredible photographers.

Here, I’ll sneak one in for you, as a teaser. The photographer said I could, because he’s awesome like that. He also brought us chocolate. From Venezuela. He brought himself from there, too.

Vertigo

“Vertigo” by Guillermo Esteves

That’s a picture of our hotel. Most of us stayed at Hotel Vertigo, which was surprisingly inexpensive for a hotel in the City ($125/nt. with tax) and not surprisingly overwhelmed by our use of their bandwidth. It’s rare a hotel of large scale can handle an Internet group hitting their network, much less a boutique place like Hotel Vertigo. Aside from that, I heard nothing but great things from my fellow travelers. The refurbished rooms were hip and fun, and we all enjoyed piling into the lobby for impromptu gatherings between trekking off to our next meal. The oversized orange and white sofa was a favorite hangout.

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Sleep Training Is Making Me Into A Bookworm

detail of Carl Spitzweg: The BookwormImage via Wikipedia

I’m on Week Four, kids. Still baby stepping. Still failing in some areas and making strides toward improvement in others. I can now fall asleep within an hour or two of going to bed, however I may not go to bed until 4am. Like I said, baby steps.

One unforeseen side effect of the sleep training program is that I’ve been finishing a lot of books. Since I’m limited on what activities I am allowed to do in bed while I’m trying to fall asleep (no more laptop or online time), I’ve been reading. A lot.

Having an iPhone means that I can read my books using the Kindle application. This may sound horrid to those of you who don’t have experience using a Kindle or an iPhone, but it’s quite delightful, really. Think of having a book light built into your book, no pages to awkwardly prop open while lying in bed, no book to position around the pillow. It’s divine.

I fell in love with the Kindle app while reading Infinite Jest. It was a godsend with that book’s infinite endnotes and monstrous girth. I already owned a hardcopy of the book, but didn’t want to tote it on the plane ride to Chicago for BlogHer. Downloading the free Kindle app and the $9.99 book seemed well worth the convenience for the trip. Upon my return, I barely cracked opened the hardcopy again—usually just to get a visual on how much real estate I’d covered. The book’s that thick.

So, what have I been reading, you ask?

Califmom’s Sleep Training Book List:

Have a Little Faith: The Story of a Last Request
NurtureShock: New Thinking About Children
In Persuasion Nation
Official Book Club Selection: A Memoir According to Kathy Griffin
American on Purpose
Little Bee
Slaughterhouse-Five
Ethan Frome


And I started Anna Karenina last night. It’s my first time reading it, so I have no idea how it will go. I don’t finish every book I start. The books I listed above are all books I finished. Ethan Frome was the only book on the list I’d read before. I remembered loving it when I read it in high school and wanted to revisit it again as an adult. I still loved the way Edit Wharton painted the bleak winter landscape, mirroring her characters’ lives. Emo kids have nothing on Wharton.

If you want to keep up with what I’m reading or what my kids read, I keep track of it all on Goodreads

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Week Three of Learning How to Sleep for Grownups

Thanks for tuning in, nuts and sluts. It’s Week Three of this grand experiment wherein I try to retrain my brain and body in the ways of slumber.

Want to know how I look? I’m showing you anyway.

Zombie

The plunger may be a bit of an exaggeration. So, sue me.

For those of you interested in the nitty-gritty details of Sleep Training programs, here are my Week Three Goals:

(Keep in mind, they’re customized to my particular brand of fucked-up sleep and my particular brand of crazy. Do not undertake this kind of program without supervision by your medical professional or someone like that, preferably someone who doesn’t have a plunger protruding from his or her frontal lobe.)

Complete the sleep diary each morning – you can either fill out a printed copy or enter it directly into your computer. [Morning? Yeah, um, I get around to this in the afternoon or evening when my brain is finally firing on all cylinders.]

Get out of bed within a half hour of 10:00 AM daily. [Still flunking on this goal.]

Limit time allotted for sleep to 8.0 hours. [This has been reduced by 1 hour since last week.]

Do not go to bed before 02:00 AM. [Last week it was 1:00 AM. Shouldn’t be a problem since I only made it there by 1:00 twice and had to get back up because I wasn’t asleep w/in 1/2 an hour anyway.]

Use the bedroom primarily for sleep. [I’ve been surprisingly compliant on this…a HUGE change for me. No TV or laptop use. Only minor twitching has occurred.]

Limit time in bed before lights out and after final awakening to a half hour. [I’ve been really good about this, too. Again, a HUGE change for me. I love my bed. It’s quite comfy. I miss it. It’s nicer than any other seat in the house.]

Do not go to bed until drowsy. [I don’t really get drowsy until the sun comes up. I have to pretend I’m drowsy around 2:30 or 3 AM to make this scenario work.]

Follow the ½ hour-½ hour rule. [I suck at this. I’d feel like a Jiffy Pop kernel if I did this. I’m getting better about just holding out until I can manage to fall asleep within an hour of getting into bed, even if that means not getting into bed until 4 AM.]

Review the progress summary and complete the compliance checklist. [yeah, yeah, yeah.]

Review key concepts, goals, and goals not met on the homepage. [okay, okay]

Work on medication reduction goal. [I’ve only taken meds a couple nights through this whole process and they weren’t sleep meds. They were for anxiety, but I counted them as sleep meds because the anxiety is related to the sleep issues on some level. But, they don’t make me sleepy.]

Continue using positive sleep thoughts to replace negative sleep thoughts. [This gives me flashbacks to Neurolinguistics Programming, but I'll bite because I'm fucking desperate.]

I will never fall asleep.

  • I am more likely to fall asleep as my body temperature falls throughout the night. [4 AM is night, right?]
  • I have a natural drive to get my core sleep. I will get to sleep later tonight. [Again, need to work on the definition of “later tonight” considering I’m not even allowed to get into bed until 2 AM.]

I slept very little or not at all last night.

  • I am probably getting more sleep than I think I am. [I’m pretty good at counting.]
  • Worrying about how much sleep I get can make my insomnia worse. I can and will learn how to improve my sleep. [Awesome.]

I will never learn to sleep better.

  • My sleep will get better as I learn these behavioral techniques. [Yes.]
  • These techniques work for most people who have trouble sleeping, so they will work for me. [I can’t wait.]
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I Need A Sponsor

Tastatur einer defekten Schreibmaschine unbeka...Image via Wikipedia

This sleep training sucks. It’s hard. I feel like I’m in a 12-step program without a sponsor.

I’m making some progress, like only using my bedroom for sleep (and sex, but that’s none of your beeswax). But, I’m failing miserably at getting up at the same time every day (within a 1-hour window). I’m also failing at getting out of bed and doing something else if I don’t fall asleep within 1/2 hour. (1/2 an hour? Seriously? That's like 5 minutes in my world. In the past week, I think my average number of hours it took me to fall asleep was 4. Average. Two nights it took 7.)

Meanwhile, I have writer’s block--super helpful given my new role writing for Examiner.com and my various other blogging ventures. I do have some fun sites y’all might enjoy during this lull.

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Ferberizing Myself

Ambien

Image via Wikipedia

I’m a bad sleeper. Notoriously. Record-breaking. I was born a bad sleeper. Ask my mom.

I didn’t go to sleep.

I didn’t stay asleep.

When I was a teenager, I didn’t go to sleep and I didn’t get up.

Now, I have such anxiety around going to sleep that you can’t knock me out with the strongest sleep meds available. I can ride out a dose of Ambien CR like it’s a baby aspirin. My brain views it as a challenge. “See if you can make me. I dare ya.”

Enter the only solution left, short of a nightly elephant tranq dart (which my husband is about ready to volunteer to administer): Sleep Training - Cognitive Behavioral Therapy (CBT) for Insomnia (a.k.a., Ferberizing for grown-ups).

Fortunately, Kaiser offers an online version of the program, so I don’t have to drag myself to a weekly class.

I’ve just finished Week One, which consisted of an educational piece and the start of my sleep journal. To say my sleep patterns are a little fucked up would be like saying Dolly Parton’s a little busty. I average a normal number of hours of sleep in a 24 hr period, but it often takes me upwards of 7 hours to fall asleep. Yes, seven. Hours.

In Week Two, I have to go to bed at the same time each night and get out of bed and the same time each morning, whether I’ve slept or not. WHETHER I’VE SLEPT OR NOT. Let me repeat myself. WHETHER I’VE SLEPT OR NOT. When it takes you 7 hours to fall asleep, there’s a strong possibility the alarm to get up is going to go off before you’ve fallen asleep.

Wish my family luck.

I don’t get to take naps this week, either, unless they’re under 45 minutes. That’s not a nap. That’s a blink.

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Poached Eggs and Cheese...heads

Packer

Image by cdw9 via Flickr

Bob’s on a plane to Wisconsin—his first post-cancer flight. (He even has hair.) Fortunately, this trip's for pleasure, not business.

He’s on his way to the Sea of Cheeseheads for Sunday’s Packers v. Bears game. They don’t make football like that in California; you have to travel to Green Bay to get it. Thanks, John, for making this weekend happen.

While Bob’s off bumpin’ cheese wedges in Green Bay, I’m holding down the fort with the kiddos. Big plans on deck here. Oh, yeah. First, I’ve decided to do our taxes. You know, the ones we were supposed to do around the time Bob got his diagnosis? Seems that extension’s only good until October, which turns out to be next month. Shit.

Ever the Master Procrastinator (did I mention that my apartment in college was never cleaner than during finals week?), I’ve mastered free-form egg poaching (first try!) and whipped up a kickass batch of biscuits (at 2am) in an effort to avoid both sleep and productivity. I’ve also located a recipe I’ve been meaning to try for Artisan Bread in Five Minutes a Day. Anyone want to place bets on whether or not there will be a loaf rising before Sunday afternoon?

Hopefully, my CPA isn’t reading this. In case he is, I promise to throw a biscuit and a loaf of bread in the box with the rest of my mangled paperwork, Mike. And can I just send you pictures of my BlogHer swag from last year and let you figure out the value? Awesome! You're the best.

(Hey, at least it’s not chicken shit. He has clients that give him receipts with chicken shit on them. I’m way classier than that. A booger here and there, maybe, but no chicken shit.)

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The Big Scan: Part Deux

IMG_0136 While Chemo Boy saws silent logs next to me, I am unable to sleep. It’s a twisted version of the night before Christmas. I’m not exactly waiting for Santa to bring gifts down my chimney.

I’m waiting for tomorrow’s PET scan to show us whether or not the 8 elephantine syringes of fire-engine-red vein-burning toxins and equal number of IV bags filled with other poisonous liquids, four IV bags of the miraculous Rituxan, and 20-days worth of prednisone, have killed all, most, or some of the cancer that was/may still be killing my husband. How awesome is that?

He’s had his Neupogen shots for this cycle, endured the aching bones they cause as his bone marrow is forced into production, experienced a spread of the peripheral neuropathy caused by the Vincristine, and had more blood drawn as he has done every cycle. It’s become routine, and it’s getting old.

If you are prone to happy thoughts, prayers, good vibes, or pulling pins out of his voodoo doll, we’d greatly appreciate any and all of those things.

The fine print: We’re scheduled to meet with Dr. W next Thursday, the day before Hubs’ next chemo cycle. We’ll get his PET scan results, discuss whether or not the Vincristine will need to be reduced or possibly stopped for a cycle to prevent additional peripheral neuropathy, find out whether chemo will be complete after these next two cycles, and whether or not radiation will be necessary. Dr. W has explained that radiation is useful for shrinking/killing individual tumors, but if cancer recurs post-remission, it is rarely in the location of a previous tumor.

 

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Soothing Him To Sleep

In the glow of my laptop, he is silhouetted. His bare back faces me, the quilt slung low across his hips, signaling he’s warm on this particular night. As I reach my fingers toward his warm, bald head, I am greeted by a week’s worth of peach fuzz that’s come in since I last trimmed it for him. It prickles at my fingertips as I swirl my way around his head, then make my way down his neck to his back, a softer, yet altogether different feeling skin, more leathery from the rashes that plagued him before the chemo began, but have long since gone. Only the toughened skin remains as a reminder for my fingers to trace along his spine. In this filtered light, I imagine his body made of leather, porcelain, soft clay, copper, marble. I imagine a mixed-medium sculpture of textures & temperatures forming the parts that blend into the whole man I love. I whisper into his warm, coppered ear, “I love you.” His snores are so small, they barely rise to his shoulders. I let my love drape over his back a few minutes more, let it hang until it slides comfortably off into its own puddle alongside his form. We forever remain 2 made better as 2.

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Couch Surfing for Love

I did not time my cold right, at all. Bug went home with my parents last Sunday just as I started coming down with a cold and just as Hubs’ white blood cell counts began their cyclical chemo-induced descent that peaks between 10-14 days after chemo is administered.

I had big plans for Bug’s time at my parents. I was going to do that dreaded task of getting into your kid’s bedroom, into the deep dark corners, where you cull out the remnants of coldPokémon half-chewed by the dog, LEGO pieces separated from their brethren, and furry balls that may or may not be viable life forms.

Instead, I spent the week prone, on the couch, with the world’s awesomest new superhero waiting on me – Chemo Boy. He doesn’t wear a cape, but he does sport a Green Bay Packers beanie cap that is quite fetching.

I also sported a variety of surgical masks, which I’ve taken to drying pig noses upon using scented markers. Hey, if I can’t sleep in the bed, at least I can have something watermelon-scented to keep me company. Right?

It’s sexy too. You have no idea. Hawt, I tell you.

So, as my cold lingers in its half-assed state, Hubs’ counts continue to drop until he gets his Neupogen shots Monday and Tuesday. These are the shots that jump start your bone marrow into cranking up production. It also makes your bones ache like a mofo. Total suckage on that level, but a big thrill for the immune system to get a jump start.

And for me, a huge bonus. I may be back in my Tempur-pedic love nest by Tuesday night. I am about done surfing on this sofa. It’s nice and all, but it’s damn difficult to get inspired to shower and get dressed when you’re living on the couch. It’s just a step away from living in a van down by the river, ya know?

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My Invisible Disabilities: Part 1

MigraineImage by makelessnoise via Flickr

I've talked a lot about my son's disabilities over the past 4+ years of blogging, but rarely mention my own. I think it's because I like to pretend they aren't disabling.

Ha!

Being a migraneur (one who suffers from migraine headaches) is an ongoing battle. Starting in middle school, I've been plagued with migraine headaches nearly every week of my life, some weeks even more. The only time I recall being migraine-free was the first 2 trimesters of my first pregnancy.

I found out about Imitrex when it first came on the market in the 90s. I'd had a migraine for 3 days, and ended up sitting at the doctor in a heap of tears and pain. He told me to hang tight, turned off the lights in the exam room, and stepped out into the hallway where he summoned a nurse, and told her to get an Imitrex injection immediately.

For the first time in my life, a medication got rid of my headache AND the other migraine side effects (nausea, light sensitivity, sound sensitivity, speech difficulties, motor impairment). It was amazing. It also felt like someone had place my heart in a vice grip for about 15 minutes.

Turns out you can't use Imitrex too often because of the side effects. I had one doctor tell me I'd end up having a heart attack if I used Imitrex as often as I needed it. So, I embarked on a journey to prevent the migraines.

After trying a whole host of pharmaceutical approaches to preventing migraines, I gave up. Nothing was working, the side effects were sometimes worse than the pain. I even tried acupuncture, which provided relief for a few months, then they were back.

So, I continue to get migraine headaches, usually a few times each week. If I catch them early, I can keep them at bay with ice packs and OTC meds. If not, I turn to the Imitrex or Frova. If they're really off-the-hook, I have to add pain meds to the mix.

But, no one can tell by looking at me that I suffer from this regularly disabling condition. I don't have a forehead tattoo alerting them, and I don't wear a t-shirt that says, "I have migraines, what's your excuse?" (Although, perhaps I should.)

Fortunately, I no longer work outside the home. Unfortunately, I do need to parent and homeschool my children. The great thing about homeschooling, for our family, has been the flexibility to accommodate our special needs without the usual battles of advocacy. I no longer have to explain to employers that I don't have the kind of headaches where you pop a couple of Advil, and go about your day.

Being a migraneur is one of the disabilities I live with. The other is Fibromyalgia. That one has been even harder for me to accept. I'll save it for another post.

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Something New

I've decided to try using an offline editing tool for writing my blog posts. After careful review (done by someone else, Thank GOD), I'm trying out Windows Live Writer.

This is the crap that happens when you are a night owl. While the rest of the family is snoring away, you spend too much time screwing around with your blog.

Next thing you know, you've tweaked a few things here and there, adjusted some column widths, changed a color or two. Then, WHAM-O! It looks like a whole new blog. 

I'm certain this is my new version of rearranging the furniture--something I used to do regularly, but haven't done in months.

Check out the new tweaks, see what you think. If you don't like it, stick around. It's sure to change.

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