Bizarro Patient Zero

It is with incredible sadness that I pass along the information that the amazing beautiful light that was Michelle Dobrawsky passed away at about 3:45 today. My Love, you will be missed. -Ryan Shellito

Cancer tired is not normal tired.  Cancer tired is having a more or less wide-awake brain, watching your body glue itself to the sofa incapable of movement.  It’s being frantic about all you want or need to do while the rest of you wants to buy sneakers on QVC.   It’s just all wrong.

Not only am I freaking out about getting my test results, but I’m in full-tilt Oxycontin withdrawal.

I’m eating tiny unsalted pretzels, drinking pineapple juice and twitching generally.

I usually don’t ask this kind of stuff, but next Tuesday I have a PET scan and Friday I will get the results.  So, well, can you send prayers/thoughts/affirmations/good vibes to your favorite deity/idol/skull of Del Close on my behalf?  I’d really appreciate it.

Thanks, kids.  Your support means lots to me.

My punky (not really, just mohawked) nephew, who is 9 and just too cool for words, kept asking me if I wanted to lay down.  Just casually, in the middle of conversations.  But later I thought about it, and dissolved.  This kid loves me.

So my heavily fragmented digestive system, for no discernible specific reason, is in full rebellion.  I’ve tried it all to feel better -

food (icepops, mostly)

drink (soy milk)

drugs (whatever’s in the box)

sobbing (not effective)

puzzles (also not effective)

blogging (completely ineffective).

When I finally get the script for the inevitable solo show, “GUTS - The Musical” (Working title only), I’ll need someone to steer me right.

Keep in mind that I am heavily influenced by “All that Jazz,” the Fosse movie by Fosse where he choreographs his own death as a giant production number.  Genius! Go Netflix it now.

In this spirit, I will be casting the “Cancer Dancers,” in full 80s Chorus Line regalia, gold spangled leotards and snappy hats.  5-6-7-8!

And instead of Jessica Lange as the guardian angel, I’ll probably just use my recently deceased mom.

Fun times, people! Who’s with me?

Read a copy gifted to me by the X.  Not as bad as I expected; much more relatable that I’d been led to believe by subsequent press.  Also, it’s in graphic-novel format, which I can’t resist.

So I was watching VH1 Top artists (yes, my brain is on idle) and it made me think of my mom.

My mom was into concerts.  Big, crazy rock concerts.  Well into her 60s.  About the same age as Mick Jagger - she saw the Stones numerous times.  She’d leave early, to beat the crowds, but boy did she love Mick.

As one of her friends said in a card to me, she was one of a kind.

Nutritionists either bore me or freak me out, in my personal experience.  This one freaked me out. 

Apparently, I need to eat more.

Now, if you are reading this blog chances are good that I weigh a lot more than you.  Except the Badger, who is a reassuring 6’7”.  I’ve always been substantial.  Never, ever have I been told to eat more.  The irony is, I’m too tired to cook (and I love to cook) and have no appetite (wha?).

Yeah, I apparently dropped 30 kg since Halloween.  That’s over 60 lbs for you Amuricans.  Even my cheap-arse Old Navy clothes are swimming on me.

Right now I am pouring a Slim Fast protein shake down my throat and squeezing a hand strengthener to build muscle.  No more girly arms for me!

Sigh.  I’m still kinda fat, though.

I feel like I’m at mile 20 of 26 here.  I’m tired of being sick and tired, tired of carrying around my bodily functions externally, tired of drawing in eyebrows.  So, things have been a bit hard lately.  And my chemo brain won’t let me remember the fabulously funny anecdotes I meant to write here.  Ouch!

Trying to catch up here…

So, I’m fortunate enough to have supportive family and friends who can accompany me to and from chemo.  One happens to be my ex-husband, with whom I remain on friendly terms (how’s that for grammar!)  So two sessions ago, one of the lovely chemo nurses (they’re all fabulous, believe me) pops into my chemo cube, looks at my ex and says “My, you’re always here with a different handsome man!”

Oops.  I’m sure he knows, but my ex is a bit sensitive on the subject of the Badger so I try not to bring him up.

I cheerfully say, “Yes, like my lovely first husband here.”

The nurse pales a bit, like she’d stepped into it.  Ex doesn’t really notice, or acts pretty well.

I continue, “Yes, and my dad and my brother…”

After the X leaves, the nurse comes back, worried, “Did I cause trouble?”

I just laughed.  I love being popular!

Last night I had screaming flashbacks of the past year and a half. It started with my ICU stay and went back to radiation, forward to the mean nurses at NYU, all over. I was convinced I was still in hospital, then just freaking out. Poor Badger had to talk me down, and I still had to stay up and do puzzles to calm down.

Scary.

Tonight I just can’t sle ep. Cryptograms, here I come.

Real housewives of Beverly hills features joes colonoscopy! Good for him!

Brunch:

Vanilla slim fast
Fruit salad
8 pills

Can I stop having cancer now? I’m seriously bored and tired. And broke. And vaguely unattractive.

On the upside. I get to lounge about doing puzzle books a nd drinking Ovaltine. Yummers!

Me: love you.

Mom: love you. More than you’ll ever know.

…

We lost Mom in March just shy of her 67th birthday.

I had so much to say, but I am suddenly at a loss for words.

Suffice it to say that I am celebrating mothers day by watching The mets blow a lead, and likely ordering challah French toast from Odessa on avenue a in memorium.

Go @#%! yourself.

Love,

your highly unlikely blood clot

I cannot believe how shitty my life is right now.

Love,

your failing kidneys

Me: (in a mood of all moods) So, why did I get this surgery anyway?

Badger: Because you’d die without it.

When in pain: don’t do stuff.

When not in pain: do stuff.

Not only can I find no humor in it yet, I can’t even really write about the ileostomy experience.

If you read cheery accounts of people living with them on line, keep in mind that I hate them all.

Me: So, am I healed up yet?

Radiologist (brightly): Oh no, you’ve got a ways to go!

Every night between 8-10, I get pained, squirrely, restless and am just an all-out mess.  This doesn’t happen in the mornings.  I take meds at 10 AM and 10 PM.

Why does this happen?

Me: So they transferred you to the step-down out of ICU!

Mom: Yeah, they probably needed the bed.

Mom’s a bit further out of the woods right now, but she still needs rehab to get back on her feet.

Mom: grumble grumble cough (through oxygen mask)

Mom’s not well right now.  Less well than me.  So, I’ll likely be posting a bit less.  I’m exhausted.

I hope the surgery went well. Post an update when you can.

I still can’t seem to make my ileostomy funny.

• 10/31/11: Surgery to remove tumor margins and temporarily resect colon to allow reconnection later.  Surgery takes eight hours.
• Spent 5 days in ICU due in part to tachycardia and excessive blood loss.  Took 2 blood transfusions.  Discharged 3 days later with temporary ileostomy.  Epic trouble in managing same (decreased but continuing).
• At home, in increasing pain.  Have not eaten or drank sufficient amounts in weeks.
• Readmitted to the hospital with severe dehydration and pain. 
• After several days, sent to radiology for ‘leak study.’  Not informed that “leak study” involves the unexpected and rapid shooting of freezing cold liquids in the area of study.  No hilarity ensues.
• Abscess discovered and drains installed.  Cannot sleep on front or back. 
• Discharged to physical rehab home.  Am youngest resident by far.  Given PT, OT and much better food.  Shared bathroom presents amusing issues.
• Drain removed by surgeon.  Pain meds increased.  Working the PT/OT.  Figuring out the cable channels.  
• 12/23/11: Discharged home.  Hasty Christmas Eve spent with dad and stepmother.
• 12/31/11: Pleasant New Year’s Eve, after time spent missing friends.
• Today: Insomnia and thirst persist.  Frustration with ostomy continues; trying to research solutions and/or coping strategies.  Impatient with long recovery time shared with surgeon who doesn’t deny that this is what happens after (see above).  Still on buckets of pain meds.  Reflecting on all of the above may or may not be helpful.  Shrink appointment on Monday much needed.

Informercials!  Off to drift off to sleep to Proactiv ads!

How I spent it:

Baked ziti (made by me) and intensely buttery garlic bread (made by Badger)

Watching the ball drop (heh heh) on TV.  Highlight - Lady Gaga dancing with Mayor Bloomberg.  I heart NYC.

So, so glad to be alive.

Happy New Year, all.  Marching into 2012 with increased hope and decreased intestines.

By the time my second hospital stay came around, my arms looked like that of an errant junkie who missed the cut for “Work of Art.”  One evening, after a series of unsuccesful punctures, they called in a pro.  The Badger noticed his name tag and inquired, “Fluffy Bunny?”  Nurse Bunny, a slightly-built gentleman of a certain age, nodded and said “Yep, it’s real.  A birthday present to myself for my fiftieth.”  He nailed a vein in no time flat and bade us a pleasant farewell.

A couple of nights ago, while waiting for our pepperoni pie (Nino’s on Avenue A - quite decent), Badger gleefully tugged on my coat sleeve and stage-whispered “It’s Fluffy Bunny!”  And I turned and saw a slightly-built gentleman in a down coat and scrubs walking down Avenue A enjoying his slice, after a long day adeptly venipuncturing.

I mean, where else would Fluffy Bunny live but the East Village?

I get the feeling that the Bunny’s been through some shit in his life, but now he’s OK.

Happy New Year, Fluffy Bunny and all.

So here’s some brief fun facts about my rectal cancer surgery.

1. Number of days inpatient: 7
2. Number of days in ICU: 4.5
3. Number of blood units infused: 2
4. Number of incisions/openings: 4
5. Number of stacked up containers of apple juice and jello (max): 6.

More later!

On Monday I embark on surgery!  Just saying thanks for all the support and love!

Try to get by a few days without any butt-updates.  I know you can do it.

Yarrr!

*Not safe for anyone, really.  Well, maybe it’s not so bad.  You decide.  I’m tired.

Here’s my presurgery prep day schedule!

1. Eat nothing.
2. Make extensive and overreaching to-do list.
3. Mix up a gallon jug of PEG (antifreeze).  Add lemon flavoring. Chill.
4. Drink this until you can’t stand it anymore.
5. Take up residence in the bathroom.  Reading materials: Star Trek handbook, Truman Capote novel, last week’s “New York” magazine.
6. Drink some more.
7. [DELETED]
8. No, wait, drink some more.
9. [DELETED]
10. Here, have another cup!
11. [DELETED]
12. Seriously?
13. [DELETED]
14. Curl up in grouchy ball on sofa.  Ignore to-do list.
15. Kill all gut flora with several grams of antibiotics in a pill the size of an ipod shuffle.
16. Repeat 15.  Mix up another quart of iced tea.  Drink.  Ignore caffeine.
17. Pack too much stuff, ignoring the fact that you will be sleeping and growling at people for the next 72 hours.  Stuff will include an ipod, several balls of yarn, three books, two magazines and a secret bottle of Klonopin.
18. Repeat 15.  Mourn death of gut flora.  Remember that yogurt is not a clear liquid.
19. Eat sorbet, which inexplicably is a clear liquid.  Bitch and moan.
20. Wonder if organic mac and cheese counts as a clear liquid.
21. Ignore “to do” list.
22. Watch “Treehouse of Horrors” with the Badger.
23. Groan.  Eat more sorbet.
24. Watch “The Next Iron Chef” with the Badger and immediately regret watching cooking shows on an empty stomach.
25. Have a fine late-night snack of Klonopin and apple juice.  Yum-o!
26. Attempt to sleep.
27. Obsessively play Plants v. Zombies to reach the level that was lost in the software upgrade.
28. Repeat.
29. Obsess over undone items on “to do” list.
30. Sack out on sofa.

Give me a week or two, kids.

Or not.  

Slogan contest to come!

I have a bad cold.  And cancer.

And the cold is making me MISERABLE.

Minor point.  Carry on.