Thursday, August 30, 2012

The Target Post

Yesterday I was reading something from a fellow blogger about how he always buys solid colored shirts at Target.  His wife had posted a picture of him on facebook, and it makes me laugh to tag pictures with ridiculous tags, so I tagged his pic.  He was holding a piece of bacon, so I tagged it "Bacon" (duh).  I tagged his eyes, "his eyes how they twinkled" and his cheek with "his dimples how merry" etc.  Anyway, I got to the shirt and tried to tag it "Target" and it said I didn't have permission.  Meh.  But that made me remember I'd been at Target over the weekend with Lily.

We could not find shoes for her to save our lives.  Leslie had already been to Target, and Macy's and Nordstrom's and Payless and had struck out.  She sent me out to get a new school backpack for her and I struck out.  But on the way out I thought. . . what the hell, I'll just take a look around for shoes just in case.  

Lily is autistic.  If you're reading my blog you probably already know that.  She moves her feet constantly when she's sitting.  When she was a baby she blistered her feet from rubbing them back and forth across the carpet of our living room.  We put socks on her.  At least no blisters.  The point is. . . she goes through shoes pretty fast, wearing holes in the fronts usually, because she likes the feeling she gets in her feet when she drags the toe of her shoes across the asphalt of the playground.  

We'd been cleaning out her closet a couple nights prior and dug up some of Emma's old Chuck Taylor's.  Well. . . Target sells those.  So I looked, and found some.  They're awesome for kids who drag toes because of the rubber toes.  Anyway, I found a pair in black and a pair in pink and I tossed them in the cart and we made for checkout.

As usual I looked for either the shortest line, or a long line of people with very little to buy, balanced out the math and ended up in line. . . I don't know. . . call it 3.  As I put the shoe boxes on the belt, I heard the cashier humming a little to himself.  I waited for the woman in front of me to pay.  The cashier put his hands on his head and hummed.  At first I thought for a split second that he was irritated with the woman paying.  That's ballsy, I thought.  You're so impatient for this woman that you're putting your hands up and humming?  But I noticed the hum never really stopped.  I noticed too that he shifted from foot to foot. . . side to side.  The fingers he had laced behind his head were fluttering against his scalp, but he took them down and told the woman politely to have a nice day as he handed her the receipt.  

Interesting, I thought. . . is he autistic, like Lily?  I was almost instantly certain that he was.  I wanted to say, "HEY!  AWESOME!  My daughter is on the spectrum!" but I didn't.  I didn't want to embarrass him or call attention to him.  So I just watched him do his job, like I would anyone else.  And he did it well.  

He did not make eye contact with me, but I only really noticed that because I was actively 'noticing' things.  I remember thinking to myself about a third of the way through the transaction, "Did he make eye contact?  I can't remember."  Lily looks me in the eye constantly, so I've never really gotten the importance of it, when I consider some of the other obstacles she has to circumnavigate.  He hummed when he wasn't politely communicating with me, asking whether I had coupons, taking payment, giving change, wishing me a pleasant day.  

And I thought. . . "Good on you, Target!  You hired a good cashier."  

And I remember thinking too that the symptoms manifest in the briefest exchange we shared at the register must also have been apparent to the folks who interviewed him for the job.  And they gave him the job.  

Okay. . . so on to the post.  After I tagged the picture (or failed to tag it) I searched for Target and figured I'd write a quick "Kudos" to them and ask a few people I know in the autism blogging community to just go read and like it because when I wrote it it was wedged (I'm not even kidding) between a wall post that said, "Target sucks" and "Eat a dick, Target."  So I wasn't particularly confident that what I posted would be seen by Target.  

I'm not sure what my aim was entirely.  I don't think I really thought it through, but it was at the very least "Hey, friends who have kids with autism and know me. . . or friends who have autism who know me, look at what I saw at Target. . . neat, right?" and also I was hoping that maybe Target corporate would look at the dozen or two likes and comments from these friends and communicate to the Target I shop at, "Good work, local store, your patrons appreciate your hiring diversity."

Right. So I posted this:

Jim W:  Target

9 hours ago ·
I have a six year old daughter on the autism spectrum. I was recently in a Target. I had my daughter in tow. We were checking out.
The man behind the register didn't make eye contact with me. He seemed a little. . . out of sorts. He rocked back and forth a little. He hummed to himself between activities. In other words. . . I believe he too was on the spectrum.
I thought to myself, "Good for you, Target! Good. For. You." The man was an excellent cashier. He was very courteous, said all the right things. . . rung me up efficiently, gave me proper change, bagged like a champ. . . in all ways a great cashier. And I think it's absolutely fantastic that he works for you. Because knowing what I know about kids/adults on the spectrum, there is no way he made it through the interview without showing the folks doing the hiring the same things that I saw. And he got the job.
It's here if you want to see what people are saying about it:

There's nothing particularly heroic or epic or even (in my head) touching or heartwarming in what I wrote. That was on purpose. I wasn't trying to be emotional, I was just trying to give them credit where credit was due. . . from a father whose daughter is autistic, to a company who I've just seen has hired an autistic adult. That's it. THE END.

I don't know whether it struck a chord in the special needs community, or people just love Target so much and they're sick of the urban legend about Target hating gays and the military or whatever. . . but it exploded. I've never had anyone THAT interested in anything I've written, and, as one commenter pointed out. . . I didn't even write it correctly. "The past tense of ring is rang. . . " he said. Fantastic. And I want people to think of me as a writer.

Somewhere in the flurry of likes and comments, I lost the ability to "like" all the commenters, or even keep up with them, or their responses to each other let alone me.

So this post is a bit of a response and summary to some of the major comments received.

1) 99% of it was positive.
The rest was split as follows:
2) This is a fake post by Target PR to drum up business for Target
3) Target shouldn't be praised for not discriminating.
4) Target discriminates against gays and the military
5) You're praising the wrong party. You should be praising the man, not the company
6) You should contact the Target and let them know
7) Random asshattery

So. . . in order:

1) The positive was SO positive. People weeping and making their day, and it made me realize what a dearth of "good messages" people in the special needs community get. . . or at least how precious even a trivial positive story is, when you spend all day every day looking for food or a job, or at IEP meetings or doctor's offices, or fighting people who think they know better than you "what that kid really needs".
And this cashier is local, but I swear I got at LEAST 30 comments about how they know the cashier and always pick his line, or they went to school with him and he's awesome, or they work with him and he does it all and is great.
He's the rockstar of Target cashiering or something.

2) The fake post thing. . . I never knew if people were seeing my comments back indicating "no I'm not a fake, just something I saw," but why would they believe me anyway? Also, I really didn't understand what the big deal was. (Apart from the cashier, who was awesome) It's not like I said. . . While I was at Target an autistic cashier jumped in front of a car and saved my daughter's life. . . it was. . . he did a good job. 
I was called a transparent corporate shill.  I was called a brilliant liar.   I think mostly people thought it was fake because of the numbers it generated. . . inexplicable, ridiculous numbers.  And it's easier to believe the bad than it is to believe the good.

3) Target shouldn't have to be praised for not discriminating. The way the world should work is. . . people do the right thing. All the time. Everyone does. You don't get credit or kudos for doing the right thing. . . you just correct those who are doing the wrong thing. But that isn't the way the world works. When you find a good story. . . a little victory. . . you celebrate it. You give thanks. You give kudos. You hope for more, but you take in your little successes you praise positive behavior and you build on it and hope for bigger and bigger successes.

4) I don't know the whole "Target discriminates" story well enough. I've read a half dozen different accounts where Target is replaced by Walmart or by Starbucks or whatever and gays is replaced by military . . . and as far as I know they're all urban legends. I get this crap sent to me via email all the time. The first place I look is It's invariably bullshit. And LOTS of people buy it hook line and sinker.

5) Is Target the hero of this "story"? No. I am. HAH! No, I kid. The cashier is.  The cashier who probably has had to deal with bullying, and therapy, and doubt and struggle all his life. Target deserves credit for not overlooking him. But he is an inspiration to me and the hero of the story; someone I hope my daughter will someday match. And there were random asshats that were dismissive of his role with the company. . .  "great, so they gave him a minimum wage job. . . some victory." That sort of thing. But really, as I look at where Lily is now. . . that minimum wage job (I have no idea what he makes) is as far from her imagined extrapolated future as Rocket Science. It's an awesome magical target (no pun intended).

6) I thought I WAS contacting Target when I left that on their wall. The idea all along was to get friends to comment and like it so there were a couple dozen views and then Target's facebook admin would see it and go. . . awww, look, someone doesn't think we suck or should eat a dick. They LIKE us!! And pass it along. And in fact about 300 likes in, the Target admin DID post a message indicating that she was happy we had a good experience with a member of the team and would pass my post along to the store's management team. I don't think she called it a team though. . . it was something all touchyfeely and corporate newspeak sounding. . .
Screw it. . . I copied and pasted it here:
Target Hi Jim - It's great to hear when our Team Members provide you with an enjoyable shopping experience. We'll be glad to pass along your comments to the Store Leadership team. –Thelma

Meh, turned out she did call it 'team'. My memory is both better than I thought and also somehow worse. Regardless it was very canned and boilerplate, but I appreciated it nonetheless. At that point, like I said, I had (in my head) HUGE (300) likes and so I was satisfied. But I thought about the comments that I should pass the information along to Target store management directly, and I think that's probably what I should do; what I will do.

7) A vocal minority of asshats would interject random "who cares" and "what kind of dumbass posts this story on a corporate facebook site" and "what's your point" along with the couple of other people who felt bad about having "Eat a dick Target" get buried under a flood of positive and so would interject as needed. Occasionally people corrected grammar assaulted character or whatever. . . you'll have that.

At the time of this post there are more than 53,000 likes on Facebook, and almost 1,500 comments. 99% of it, like I said. . . is overwhelmingly positive.

I did not count on that sort of response on Facebook. For me a huge response is like. . . 60 likes. It wasn't meant to generate attention or traffic for me. . . or really for Target for that matter. It was just supposed to be a heads up to the special needs community that Target does good things and a kudos to Target for doing them.

But. . . I love that people loved the story. I loved that people knew the cashier (whose name I now know, and whose line I'll now seek out regardless of the balancing math of number in line versus amount in cart) and thought the world of him. I loved finding out that he is on the spectrum. I loved finding out that he does more than cashier, and that people think he's a good guy; a gentleman. Today was a good day.

I hope Target appreciates him and what he does for them. I appreciate that they hired him.

For an update on this, See "Epilogue".

Monday, August 27, 2012


Some highlights of this past week with our children.  If you're friends with me on Facebook you've probably already seen this. . . or some of it.
My daughter, Lily, isn't consistently verbal. Mostly she scripts. MOSTLY she does not answer direct questions. She makes her needs known by communicating them. . . but you can't ASK her what she needs. . . she won't tell you. You can't really ask her yes/no questions and have yes mean the yes you think it is or no mean the no. It's complicated and confusing.

Anyway, Grammy and Pappy (Leslie's parents) were watching her yesterday so Leslie could start her first week back at work since surgery, and Pappy was trying to get her to sit on the potty.

Pappy: Okay, Lily, it's time for you to sit on the potty

Lily: I have one thing to say about that.
Pappy: Oh? What's that?
Lily: It's never going to happen.

Really?  "It's never going to happen."  I love it.  I GUESS she's scripting it. . . I don't know where she heard it.  But it doesn't really matter.  She declared she had something to say, and when questioned about the content of that statement, she provided detail.

It's nice when communication is clear to everyone.

Yesterday, Emma, my oldest was eating Leslie's spaghetti.  I can't remember where Leslie was.  She might actually have been at the table, or up giving Lily a bath.  

Sidebar:  It's important to know that there is a daily ailment troubling Emma.  That daily ailment is never the same, and almost always occurs to her to relate to us when she is expected to be "doing something."  Yesterday, for example, she told me the following over the course of the day:  "My head hurts."  "My finger hurts."  "My thumb hurts."  "My knee hurts."  These were all throughout the course of the day.  All presaged by some moan of pain or other.  All just after being told to either:  1)  eat, 2)  brush teeth, 3)  put something away, 4)  go to bed. . . not necessarily respectively.  This is EVERY DAY.  Once, long ago, I used to respect each of these individual ailments, now I just tell her she's growing, and if she continues to complain, offer her tylenol (she HATES taking tylenol).  

Yesterday, as I indicated, Emma was eating spaghetti.  

"What's wrong, baby?"
"A spice got on my tongue!"
"A spice?"
"Yeah. . . it burns!"

This I likened to a vampire and holy water (to the good people of Facebook).  What I didn't mention was her follow-up to my eye roll at her dramatics.

"Well. . . have YOU ever had a spice on your tongue??"  She asked this indignantly, a foreshadowing perhaps of the teenager she'll become, posturing petulantly and declaring that "you've never been in love before!" or some equally ridiculous notion that every kid goes through when he/she cannot imagine that anyone has ever felt anything like the pain he/she is going through ever before or will ever again.  It made me laugh thinking of some of the stupid "1st World Problems" status posts I've done on Facebook poking fun at the drama generation. . . like telling my wife as she comes out of surgery that I have a hangnail and that "you can't know what this pain is like!"

Anyway. . . "Have YOU ever had a spice on your tongue?" she demanded.
"Yes, Emma.  ALL.  THE.  TIME.  There are spices in just about everything we eat."
"Even pizza?" she asked.
I looked at her evenly.  "The same exact spices that are in this spaghetti sauce are in pizza sauce."
"I don't like spices."
"I know, Emma.  Or anything made out of food."

Even Oreos. . . tonight after dinner I offered Oreos to Lily, cause Emma has no interest.  Actually, I brought out Oreos and wafer cookies, you know the kind with the yellow, pink and brown ones all in one big box?  They're shaped like rectangle sandwich thingies?  Anyway, pure sugar.  

I broke an Oreo in half and put it on the table.  I broke a wafer cookie in half and put it on the table.  From her vantage, Leslie offered the following, "I think your father secretly hopes you don't want those cookies, Lily."

Lily didn't want the cookies.  I ate them.  The bag of Oreos were still sitting at the table and I offered them to Emma.

"You want one of these Oreos?"
"I don't think you should eat those Oreos," she answered.
"What? Why?"
"Because they're a hundred years old!"

sooooo old.

Meanwhile, Lily hasn't been eating anything. . . spices or no spices.  Except bacon.  But who can blame her.
Lily, eating bacon.  See???

Tuesday, August 21, 2012

How I Spent My Summer Vacation

I have trouble writing about the bigness of vacations because so much stuff happens, but most of it is the day-to-day that really doesn't lend itself to an interesting blog.  So I'll touch on it a little, then I have to get back to writing Chapters 4 - . . . infinity of the Bigger Story. . . story.

We vacation in Nags Head.  This year we decided to stay Sunday to Sunday.  If you vacation Saturday to Saturday and understand what Saturday beach traffic means, then consider saving yourself the knuckle whitening stress of bumper to bumper traffic and go Sunday next year.  It worked for us.

Friday while I was at work, Leslie got  most of our stuff ready to go.  She packed the kids, herself, the overnight bag, the groceries, toiletries and bedding.  I packed myself.  50-50.  That's how we roll.  Anyway, she packed during the day, unless she was working from home on Friday and her coworkers are reading this, in which case, she packed late late that night after working a full day in our home office.  But anyway, when I got home it was all packed.

My NON tongue-in-cheek 50/50 piece comes from my roll which is. . . take the packed stuff and put it in the car.  She still does the lion's share by a fair margin, but packing the mini van sucks.  I opened the garage door and started packing.  I think I got distracted because at some point our neighbor knocked on the door and said. . . "did you know your garage door was open and that your minivan trunk is open?"  and I responded that we were going to the beach and that I was packing.  And it took longer than it probably should have to convince her that I wasn't lying because I think the minivan was empty still and the trunk lid had been open for a couple hours.  REGARDLESS. . . I got it packed.

 We had a few last minute things to pack in the morning (shower stuff, jammies, slippers, etc) then we were off to the races.


Lily was melting down.  It started about an hour before we left and nothing could get her back under control.  She was whining, wouldn't eat, wouldn't go on the potty, was angry at being fastened into the car and slapping at Leslie while she pushed her into place and had no interest in the movie we'd put into the portable DVD player that is often the savior of long car rides.

"She'll calm down once we're driving," we told ourselves.

We got both kids in the car and my wife was grabbing something from the house and came out just in time for me to turn the key in the ignition and for it to go. . . "Clickclickclickclickclick" instead of "Runinininin-vroom".  From outside the minivan her eyes got wide and she mouthed, "what's that?" and I calmly replied, "What the hell do you think it is?" at the top of my lungs only the "hell" part was in my head and not out loud because the kids were sitting there.  I tried again. . . "Clickclickclickclickclick".

"Is the battery dead?"

"Probably," I replied, before attempting to make it about her, "have you ever had your battery replaced?"
"I don't think so."
"Batteries usually last 5 years or so." In my head I think I was trying to make some sort of passive-aggressive argument for this being her fault as a result of her failure to replace the battery before it went dead.  I had conveniently compartmentalized any memory of the hours I'd left the trunk open the previous night.

I got out of the car ran into the house for the keys to MY car.  I opened the trunk and got out the jumper cables, popped the hood, and clipped the red to plus or the black to plus or something. . . I can never remember.  Ultimately it doesn't matter as long is plus is to plus and minus is to minus, but whenever I jump a car my brain goes back to some partially obscured memory of a conversation with my father that goes like this:

"If you fasten the cables to the wrong posts your battery will explode!!!"

And that's all I remember.  So I fastened the battery up and turned on the car and then popped the minivan hood and followed red (+) to red (+) and black (-) to black (-).  I first clanged the two clips together though, because it sends out a shower of sparks if the battery is connected to them securely, and also (and, I'll admit, primarily) because it looks so badass when the sparks shoot out.

From inside the minivan, Leslie turned the key to a satisfying, "Runinininin-vroom".  While the cars were connected we talked about what we'd do if it didn't charge the battery (for whatever reason) and calmed Emma down (she was getting upset because this is NOT the way family vacations are supposed to start).  I disconnected the jumper cables, closed the hoods and put my keys back in the house.

We have a AAA membership and I know they'd have come out and replaced the battery if push came to shove, but while my wife ran in the house to try the still angry and crying Lily on the potty again, and after I felt a suitable amount of time had passed, I shut off the minivan, prayed to the flying spaghetti monster, and turned the key. . .

"Runinininin-vroom".  LIKE A BOSS.

At this point my wife was back, placing the struggling and upset Lily back in her carseat before climbing in the van herself.  She got settled in and I said, "Just a sec," and decided to make a last second pit stop myself before we took off.  Only. . . only I had the minivan in reverse and was just holding us in place with my foot on the brake.  When I opened the door and climbed out, the van started moving backward and Leslie shouted, "Jim!"

I jumped back into the fucking van.  It was a "fucking" van at this point, despite every single solitary issue that had gone wrong being solely my fault, and shoved down on the e-brake before having the presence of mind to push the brake and bring the van back into park.

Shovels and brooms and my daughter's 10U softball banner (inexplicably still hanging in our garage months after the season ended) had clattered to the floor of the garage and I had to pull back inside far enough that the door wasn't wedged open by the crap still hanging on the wall.

I wanted to throw stuff.  I got out and moved all the crap out of the way and then just said "fuck-it" and walked into the house to pee and cool off before returning to the van to leave.  Emma was crying at this point.  "This is NOT how family vacations are supposed to start!"  Lily continued her own tearful agreement.

I took a long deep breath and climbed back into the van before putting it in reverse backing out.  I felt the van bump something and made my peace with it (whatever. . . the car runs over it, we pick it up later) . . . until stuff started to snap and break and then I was like. . . NOW what?  At this point I started laughing, because at a certain level of stress you just top off and start to giggle like a school girl.  Not giggling madly. . . just laughing at the comedy of the situation.

I got out. . . I had shattered the push broom and bent into a 30 degree angle the handle of (and this made me a little sad) the steel core snow shovel we had gotten during "Snowmageddon" of two years ago.  I kicked the broom remains out from under the minivan, tossed the shovel to the front of the van and climbed in.  While I was out Leslie had started laughing and Emma, still crying, was saying very forcefully, "It's NOT FUNNY" and Leslie was attempting to calm her down.  Lily continued to whine and cry unabated.

Eventually we closed the garage door and drove, and although Lily did NOT calm down once we started to drive, she DID calm down about 30 - 45 minutes later with the aid of some fruit snacks or gummi bears or something, I can't remember.  Leslie handled that part.  Emma also settled in and just hoped that the vacation would get a LOT better and end more happily than it began.

And it did. . .

The End. 

Monday, August 20, 2012

The Bigger Story: Chapter 1.5 sorta

This occurred "The Day My Wife Was Dying".  It really underscores how even when something tragic is happening, something your brain can't process because it's too big and too awful. . . you don't stop feeling other feelings.  You don't lose the ability to laugh or smile or appreciate beauty just because you're in mid-crisis.  Sort of like when you're at a viewing of a dead relative, but something funny happens and you laugh then you look around feeling guilty for laughing. . . like you're not being somber enough to properly respect the dead.  Anyway. . . I do that a lot, as most of you can probably imagine.  I sort of forgot I wrote this, but it's the natural transition between Chapters 1 and 2.  When I originally wrote it, I made no mention of the cancer because we still weren't sure how we were sharing the information, or with whom.  So I edited it a bit cause. . . now you all know!

     My in-laws were over. We were having one of those "family meetings" that you read about, where the family is in crisis and everyone needs to get together to support each other, plan moving forward and so on.  None of us really knew what we were going to do about Leslie's news.  We'd only had an hour or two to digest it.
     It was a stressful discussion, with everyone taking turns sporadically bursting into tears or taking dramatic stances against that bastard, Cancer, in support of our maiden-fair (I mean Leslie in this instance) when the doorbell unexpectedly rang.  It was a pleasant surprise considering being in a family meeting discussing my wife's cancer is probably very close to the bottom of the list of "things I'd like to be doing". I got up from the couch and walked to the door, looking through the window to see the next door neighbor girl, Amy (name changed to protect the innocent, yadda yadda). She occasionally visits to see if Emma can come out and play. I was preparing to tell her that Emma was with her other grandparents when I opened the door.
     "Hi, Amy," I said. I noticed she was carrying a blanket and had a stuffed animal tucked under her arm. This is not typical. She's 6, and although that's not out of the stuffed animal demographic, I don't see her carting blankets or stuffed animals around the yard routinely.  Or . . . ever.
     "My mommy needs time," she responded, without preamble.
     "W-what?" I responded. My eyebrows rocketed toward my hairline. "She needs time??"
     Amy is more or less well-behaved, at least when I've been around, but her brothers are pretty. . . "high energy".  I know a lot of the time I'll find them tearing around our little cul-de-sac, chasing each other while their father works outside the house so their mother can get a little work done INSIDE the house.  I'd observe them out on the lawn, or street, in all manner of attire, as he did yard work and they explored the cul-de-sac barefoot. They're less of a micromanaging, satellite parenting couple than Leslie and I probably are. . . less over protective and more. . . "that'll heal, and if not we get frequent flyer miles at the ER".  I think it comes from having a boy first.
     So here was Amy. . . her mother needing "time". . . no evidence of the brothers.  Had she'd snapped?  Here was her daughter on my doorstep with blanket and stuffed animal, ready to spend the night or something so that her mother wouldn't murder her.  At least that’s what I’d gathered/assumed.
     "Your mom needs time?" I repeated lamely.
     "Yeah, mommy said she needs time."
     Unbelievable. . . I'm in the midst of a family crisis and SHE needs time.    Something occurred to me.  "Wait. . . is your mommy cooking something?" I asked.
     "Yeah, and she said she needs thyme."
     "Just a minute, I'll be right back." My eyebrows slowly returned to their natural relaxed position, and I chuckled, even as echoing chuckles issued from the listening family in the next room. I retrieved the thyme from the lazy Susan and brought it to the door.
     "You tell your mommy to take all the time she needs," I said, relieved.
     Amy looked up at me earnestly and said, "Okay," then turned and ran with the shaker of thyme across the lawn to her house, blanket and stuffed animal in tow.
     The next night they had a Halloween party. I brought Emma over and was "sociable" (i.e. drank a beer, sampled a few appetizers and split). Before I left I told my neighbor the story and she was appropriately amused.  I'm excited that she wasn't offended I thought there was a possibility she'd had a nervous breakdown. Maybe that possibility ALSO comes standard with having a boy first.

Tuesday, August 14, 2012

The Bigger Story: Chapter 3

Read Chapter 1:  HERE
Read Chapter 2:  HERE
Chapter 3:  Sharing the Burden
After reading about the side effects of chemotherapy, probably the first thing I really looked for and researched was what the ‘experts’ had to say about telling the kids.  I’m a pretty private person.  (If you're reading this blog and thinking. . . "What?  What don't you feel comfortable sharing?".  That's just on the blog.  In person I don't like talking about "stuff".)  More private than my wife, but this was her burden, and if she could lighten it by sharing it with her friends, then so be it.  I told her my preference was to just tell our closer friends and family only, but I wasn’t passionate about the privacy of the matter, and ultimately it was her decision.  Regardless of the decision, the one that caused me heartburn was Emma, my older daughter; I didn’t want to tell her “wrong”.
Emma is a bright, sensitive girl.  But identical news shared with her two different ways could be counted on to elicit two wildly different reactions.  I suppose that’s true with anyone.  News put bluntly and insensitively is more likely to upset someone than the same news carefully couched and tenderly phrased.  Emma might burst into tears or laughter at much lighter tidings though, so I was concerned. 
No matter what I read there was no consensus but this: “Tell the truth and share what you’re comfortable sharing.”  I think I’d hoped for study results with percentages and lower incidences of depression/blah blah blah in demographics of female children ages 6 – 8 etc, etc, etc, and there wasn’t anything like that.  I wanted the news shared with her in a way that would cause her the least confusion and concern, while still conveying its importance.
Lily was less of a concern.  She wouldn’t notice.  We could tell her anything and it would almost certainly be met with, “I want Wiggles.”  Problem solved.  Emma, however, would require some thought.
I told my boss.  In fact, my boss was the first person (not in the family) I told.  I didn’t want to do it.  It was a personal issue, and work is not a place for personal issues.  But I knew I was going to have to be away from work to take Leslie to appointments and sit with her during treatments, and there was just no way around telling him.  And it was good that I told him.  It gave me a confidante.  I hadn’t told my friends yet, and because I felt I had to discuss the agenda for treatment as it impacted my work schedule, and because I’m comfortable discussing other things with him, he was able to give me his opinions on how to tell Emma.  He has two kids of his own, and he was the first person to raise the issue of “if you tell other people, their kids are going to hear about it, and if their kids hear about it, eventually Emma’s going to hear it from those kids.  You want her to hear it from you, so you can control how she learns."  I put that in quotes. . . but you know. . . probably he said it better.
I told my boss that I wasn’t keeping the news a secret, but neither was I telling anyone, if that made sense.  He understood.  He did tell his boss, however, and they requisitioned a laptop for me so that I could minimize the amount of sick time, by allowing me to “work from home”.
I probably undervalued my own need to share the burden.  It was nice to be able to talk openly to someone about something that was occupying an ever-increasing portion of my thoughts.  I usually pooh-pooh the idea of sharing feelings, and maybe it wasn’t so much the sharing of feelings that I was doing, but talking about the process did help me to make it seem a little less daunting, and to feel like I had someone in my corner.
We knew we had to tell Emma, but hadn’t, and the time-table for this family conference was bumped up in importance by an encounter outside of daycare one day as I held Emma’s hand and walked up the hill to get my car.  A friend of Leslie’s was driving down the hill.  She saw me walking up and slowed down.  I waved briefly and smiled.  The window slowly rolled down.  She favored me with such a look of pitying, head-tilting, eyebrow arched sympathy that I knew she ‘knew’.  Leslie hadn’t told her, but someone had.  I immediately looked at Emma to see if she had noticed.  She seemed oblivious.
“How’s Leslie doing?” she asked, apparently from her tone and expression, she expected Last Rites were being administered at that moment, or in the near future.
“She’s fine,” I said, breezily.  Let’s move past this moment, please, I thought. 
“IS she?” she asked.  I was clearly being brave, she must have thought.
“Yeah, she’s great,” I said, attempting to somehow make “she’s great” convey the meaning, “We haven’t told Emma that anything’s wrong yet, and I’d really like to do it in a way that doesn’t scare the shit out of her so please let’s move past this.”
She nodded seriously and told me that she and her husband were thinking about us and if there was anything we needed. . .
It was a very nice heartfelt exchange made extremely uncomfortable by virtue of the fact that the subject matter was being kept secret from the girl whose little fingers were currently intertwined with my own.  We had to tell Emma soon.
In the end we elected to “tell the truth and share what we were comfortable sharing.”  Thanks, books!  What we told her was that Mommy had found a bump, and that she needed to get it removed.  We told her that the doctors would have to remove it with surgery, but that mommy would be asleep and it wouldn’t hurt.  We also phrased the discussion of chemotherapy and hairloss like it was an amusing and wonderful story. . . “And get this, Emma, the medicine they give mommy to make the bump smaller will make all her hair fall out!”
“No way!”
“Yeah!  She’ll be totally bald!”
“Ewww, that might freak me out!”
We told her that Mommy would be tired after the treatment and that she’d need to be a big girl and help out Daddy because Mommy might not feel well enough to do some of the things she usually did once they gave her the medicine.  We didn’t use the word ‘cancer’.  We were afraid that if she used the word to her friends they might trot out the word ‘death’ in a little playground word association game, and we thought that might be a troubling development for an 8 year old to accept.  Emma was a trooper.  She absorbed the information we provided her easily.  Woohoo!  We’re awesome parents. 
We counseled her that this wasn’t something we wanted her to discuss with her friends.  We figured this way it was less likely that they’d start raising fears and doubts in her sensitive little mind and start creating the sort of anxiety that our little talk was meant to proactively defuse.  It’s not a secret, we said.  Some of your friends may know about it.  We’d just prefer you not bring it up.
What troubled Emma most, it turned out, was that Mommy was going to have a doctor cut her, and that worried her.  About four days after we told Emma Mommy’s secret we got a call from the school.  Emma was having an anxiety attack.  She was clawing at her chest and she was crying uncontrollably in music class.  The music teacher couldn’t get her to stop, and the biggest concern of all (stupid stupid stupid), when he asked her what was the matter, all she would say was that, “Mommy and Daddy told me not to tell anyone about it.”
Oh god, awful, awful parents, to entrust a secret like that to a little girl and then tell her she cannot share HER burden with anyone, a burden so big that grownups have to share it to ease their own minds, but forbid the eight year old any way of venting her concerns.  I felt like crying.  We picked her up from school. 
We told Emma’s teacher.  And we told the school counselor.  And we told the music director.  They needed to know.  They helped us make sure that Emma would be able to share her burden with someone.  They helped us make sure Emma was “okay with things” when Emma wasn’t with us.  They developed special “code words” that would allow Emma to communicate her need to talk about what was going on with Mommy to someone, and they would see to it that Emma was able to share her concerns and address them so they wouldn’t build up inside her and explode out of her in tears and hives.
 That was the last such episode, though.  Mostly she seemed fascinated by the idea of seeing Leslie without hair.  We’d catch her looking at her mother askance and when questioned, she responded, “I’m just trying to imagine how mommy will look when she loses her hair.”
Our decision to not mention the “C” word may have been a good thought, but proved unnecessary.  Watching the football playoffs several commercials showing a hairless child being entertained by a star athlete put a seed in her brain that grew into, “Mommy, do you have cancer?”
“Yes, Emma.”  Then, hesitantly, “Where did you hear that word?”
“On the TV.  That kid on the commercial.”
“We didn’t want to scare you.  Cancer is a scary word.”
“Cancer isn’t a scary word.  Diabetes is a scary word.  Hemophilia is a scary word.  Cancer isn’t a scary word.”
Huh.  Okay then. 
Leslie told her boss.  Her work ethic is amazing, and it’s recognized in her office.  She got permission to work from home for a month until she knew how she’d react to chemo.  Mid month she got permission to keep on doing it as long as she needed.
We told friends.  Friends, of course, told other friends.  Most of them didn’t know how to take the news.  They thought, as we had, that Leslie was dying.  To this day I'm convinced that there were people who refused to call for fear that they would interrupt Leslie in the midst of her death throes.  It’s one of the things that undermines Leslie’s positive attitude most; being treated as if she’s about to die.  She wasn't confident enough in her prognosis yet to be able to constantly field the mournful pity of ignorant friends.  Ignorant is harsh.  I mean ignorant in the way we ourselves were ignorant on “The Day My Wife Was Dying”, uneducated about what to expect, uncertain about her future, and scared.  When I tell friends, I almost always include some variation on the theme, “This is bad news, but it gets better.”  I also almost always explain how bad the news was on the day we learned, and how good it is now by comparison.  I think that helps people understand not only is the future brighter than we originally thought, but if they thought the worst when they heard the news, they weren’t alone in thinking it.
The friends who told their friends and so on turned into meals every other night provided by friends and church groups.  Literally every other night for the next six months someone was scheduled to bring us dinner.  Leslie had the website address that showed who was responsible, what they were bringing, and when.  Every dinner ended up being enough for about six dinners and the leftovers accumulated faster than we could find storage for them.  The negative of this, and it’s so minor it’s almost not worth mentioning, is that the food we bought at the grocery store slowly wasted away, rotteed, and was discarded as we continued not cooking our own meals and eating what people brought us.  But having someone bring a prepared meal on nights when I was left to bathe kids, put kids to bed, make lunches and dinners for kids and us was amazing.  It’s an hour or more of time every night that could be spent getting things ready for the evening and the following morning when Leslie was too sick to lend her familiar helping hand.
So many people stepped up to help us when we needed it most.  And that more than anything else is the justification for sharing the burden.  And the more help we got the less stressed I felt.  And I ordinarily HATE getting help.  I always feel like I’m indebted and I hate that feeling.  But sometimes it’s just too big to handle alone.  Sometimes it’s stupid not to accept help freely offered.  Feeling indebted to someone because of his generosity is sometimes a small price to pay for taking some of the weight and stress off the person you love when she’s going through something like cancer.  And being the strong silent type isn’t the help she needs. 
We have an acquaintance who was diagnosed with breast cancer.  It’s a “secret.”  We found out about it the same way Leslie’s friend driving down the hill at daycare found out about Leslie’s cancer, on the sly.  This acquaintance is keeping her cancer secret.  I respect her/their decision, but I look at how much help and support we’ve received and I want to call her up and tell her she should share the burden, lighten the load a little.  But I don’t “know” she has cancer, so I can’t.
It seems like each new person we share our news with provides us with some additional help or support.  Whether it’s being flexible with work schedules, bringing meals, picking up or dropping off kids, keeping an eye on an emotional child, or just giving hugs and encouragement, there hasn’t been a person yet with whom I’ve regretted sharing our news.
And that's it. . . that's what I had written two years ago about our experience with Cancer.  I'd planned to write one Chapter called:  Chemo from A to Z (We've Got a Pill for That), one called The Benefits of Cancer, and then a Final Chapter talking about radiation and recovery, but I don't know. . . I got away from it and never came back.  But here I am, and before I talk about where we are now, maybe I'll finish the story of where we were then.  But Leslie's had a recurrence.  The cancer came back, like that infernal cat in the kid's song.  Wasn't supposed to, but did.  And the prognosis is the same. . . it's just a bitch that it has to be treated all over again.

Friday, August 10, 2012

The Bigger Story Chapter 2

We're still climbing in the wayback machine. . . a little further along in the process. . . still processing, reacting. . . planning. . . figuring out what to do.  

I'll probably post this Friday, and then post the last of the "already-written" stuff on auto while I'm on vacation.  But I probably won't really be able to respond to comments on Chapter 2 or 3 until I get back from vacation.  I'll be able to READ them. . . but replying is a pain in the ass from the iThingies.

Read Chapter 1 Here
Chapter 2:  Exploration (Days 4 – 41)
When you choose your own adventure you have the luxury of exploring first, then discovering.  When your adventure chooses you, it’s the opposite.  The Day My Wife Was Dying, was the day she learned she had cancer.  We then set off on a fact-finding mission to figure out just what sort of adventure had picked us.
She had her diagnosis, but really no idea what to do with it.  Do you talk to an oncologist, do you talk to a cancer surgeon?  Who leads the charge?  Is it the general practitioner?  Her OB/GYN?  There was an overarching sense of a ticking time bomb.  With Christmas approaching we wanted desperately to keep things as normal for the kids as we could, but this is cancer we’re talking about.  With my mother’s treatment in the back of our minds, we thought we had some time to work with.  They had told my mother when she had visited with the doctor that she could and should go on the vacation she had planned to take prior to coming back and having the surgery, so we were optimistic that they’d tell my wife the same thing; in essence, enjoy your Christmas, save your cancer for the New Year.  Hurray for 2010!  Oh. . . hi, cancer.
We learned that cancer surgeons were step one and got a list of them from the radiologist at the hospital.  My mother-in-law was a nurse and called her friends who recommended a few people.  My mother loved hers and recommended her.  The first day of the following week Leslie called seven of them, eliminating some simply by their ‘first available’ dates being further out than what we found comfortable. 
She faxed pathology reports to doctors’ offices, or at least arranged for them to be faxed.  Over the phone she was able to capture a lot more information about her specific type of cancer and the types of treatment she could expect.  I was at work so I received periodic updates as she called doctors and they (or their nurses) returned those calls.  We settled on three doctors, my mother’s doctor and two that the hospital had recommended, and I had researched (okay, I googled her).  Two of the three worked in the same office, and when we couldn’t get our appointment confirmed in time, we eliminated one of them and opted to keep two women.  It was more or less an interview process.  If one of them blew us away we still wanted to get a second opinion, but we’d go with the one we felt warm and fuzzy about.
The first appointment was with Dr. Professor.  No, that’s not her real name, but wouldn’t it be funny if it were?  No, Dr. Professor not only was a celebrated cancer surgeon but also was also the Clinical Assistant Professor at a Medical College.  Perhaps that should have warned us away.  It did not. 
The visit itself overall was fine.  I give it a ‘C’.  Doctor Professor was caring and compassionate.  She appeared to know what she was about.  She made sure we left knowing what our options were.  If we had met just Doctor Professor perhaps I would have upgraded the visit to a ‘B+’ .  But, and this is an enormous ‘but’, when you sign on with a doctor, their staff also comes with the package.  You’re not just getting Doctor Professor, but also her nurses and physician’s assistants and radiologist and etc.  And, and this is an enormous ‘and’, in the case of a professor, her students.  And so my wife, who was scared and uncertain and wanted nothing so much as to be placed in the hands of a caring but competent surgeon to guide her on the road to recovery instead found herself in the awkward hands of a medical student as he used her cancer experience to generate some experience of his own.  It didn’t help his cause that he was male.  That made her less comfortable, and he couldn’t help his gender.  It also didn’t help his cause that he had every appearance of having just entered Junior High, though his tie and little doctor’s coat helped that out a ‘little’. 
What followed Doogie Howser M.D. (in training) was a cavalcade of exams.  First his, then a physician’s assistant, then Doctor Professor herself, praise the lord.  At each exam my wife was asked a series of questions.  In no instance were the questions allowed to be different.  Medical history/age of children/which breast/age of grandmother when she found her cancer/and on and on.  The identical questions were asked no less than four times.  The admitting nurse took them.  Doogie took them.  The Physician’s Assistant took them.  Dr. Professor took them.  At one time I looked around the room where my wife, discomfort evident, was being examined and discussed, and counted six medical staffers.    
Early on in the process I told Leslie to tell Doogie that she was uncomfortable being examined by him and to fetch the doctor for her, but she wasn’t comfortable doing that either, so I suppose she chose the lesser of two discomforts.
I was disappointed in the process to say the least.  I do understand that the best way to train people to help others better is to get them real world experience.  I just don’t appreciate my wife’s misfortune being used as fuel for that experience.  I just want her health care managed by someone who knows what he/she is doing.  I’m sorry, but my wife’s cancer is not your set of surgical training wheels.  Or at least it shouldn’t be.
An appointment to get an MRI was set up with promises to forward results to Dr. Professor upon receipt, should we wish to pursue Leslie’s healthcare through her office.  The MRI was scheduled four days later and was actually handled at my mother’s doctor’s office, the Breast Cancer Center of Passavant Hospital.
That’s right, I started and ended a paragraph with just a word, “wow”.  It’s the subject of the paragraph, the description of the experience and the conclusion of the paragraph all wrapped up in one.  But is it a good wow, or a bad wow?
Before the visit to the Breast Cancer Center, my mother had a follow-up with her doctor.  I’ll call her Doctor General.  I’ll be talking more about her later.  My mother had tried to piggy back an appointment with her doctor or to delay her visit so that Leslie could take her time slot.  It hadn’t really worked out, but the two did chat about Leslie’s cancer and what to do.  Leslie had also talked to the nurses there and had been getting a lot of the information about her condition from them.
So when we arrived at the Breast Cancer Center, although we weren’t meeting with the doctor yet (just getting some imaging work done) Leslie was known.  She was hugged.  She was greeted.  She got a sympathy card from the staff.  She was a cancer rock star. 
And to be fair to the folks working at the Breast Cancer Center who are not in Doctor General’s staff, they went above and beyond the call of duty as well.  The nurse who wheeled us into the changing room prior to my wife’s MRI was a cancer survivor.  She’d had a double mastectomy with reconstructive surgery and offered to show her how it looked.  That's right, she offered to go topless for her.  Leslie (in my absence, of course) took her up on it.  I don’t know if that’s protocol, but it was offered genuinely with zero self consciousness and it took some of the scariness out of the whole thing.  We knew about reconstruction, but how would it look if she needed it?  Now she knew.  Everything was handled well. 
Earlier I said that when you remove the threat of imminent death everything seems to be good news, and although that remains true compared to that threat, once the threat was removed the idea that it was ever really a threat started to fade too.  And that’s when each new bit of bad news began to sink a little deeper into our tragedy-thickened skins.  The MRI results came back and said the tumor was three times larger than what we had thought.  It was 5.5 cm, not 1.8 cm.  And although the prognosis remained the same, the result was not the “woohoo” I may have led you to believe it was.  There were more tears, and long discussions.  I remained pretty comfortable regardless, but it’s far easier to remain at peace when you’re not carrying around a tumor that has somehow gone overnight from the size of a penny to the size of a golf ball.  And yes, I measured a penny and a golf ball to accurately write the comparison.  Her new tumor size pushed off the reassuring “Early Stages” breast cancer graphic (from the poster in the examination room showing a tiny little tumor on the woman’s transparent breast) into the more ominous “Advanced Stages” graphic where the transparent breast had a larger percentage of the picture devoted to the malignant bump and went on to indicate it might have migrated to the lymph nodes.
Also, we’d been given some literature after our visit with Doctor Professor and reading cancer literature about what one might ‘possibly’ expect when receiving chemo is not a pleasant activity.  Each ‘possibly’ is translated to a ‘probably’ in the paranoid brain, and when the probablies include such things as bleeding, mouth sores, hair loss, constipation, fatigue, and more, then you start getting a little depressed.
The appointment with Dr. General was a couple days away and we used that time, once more, to calm ourselves down.  Leslie had a friend who had almost exactly the same size tumor and had undergone chemo and surgery and was, like my mother, good as new, or at the very least certified pre-owned.  That much, again, got us through the interim until we were able to meet with the good Doctor. 
And so we met with the doctor.  I said when you pick the doctor you get the staff, but I think if you picked this particular staff I you’d pair it with any reasonably competent doctor and consider yourself well-served.  In this case the Doctor was icing on the cake.
Little things mean so much.  The ridiculous gown that nobody can explain how to properly tie and inexplicably have a pocket that ends up being centered over your left shoulder blade had been replaced by a soft white terry cloth gown with a pink cancer ribbon stitched on the front.  How much money does the hospital save keeping those threadbare monstrosities in service and rewashing them for decades?  I don’t know, but you’d think with the amount of money it costs to see a doctor every hospital in America could afford to foot the bill for a nice soft terrycloth robe, because my wife loved it.  Loved it!  We almost stole it we loved it so much.  But we didn’t.  Seriously, cause that’s just inviting a karmic beatdown.
Doctor General was very no-nonsense.  She talked fast and didn’t wait to see if we were taking notes.  She made certain assumptions about what we knew and what we didn’t know and she just blazed a trail of treatment based on the path she assumed we were already on.  And maybe that would turn some people off.  But it was very comforting to my wife.  She liked the idea that someone was, at last, taking charge of her treatment.  Someone had a plan.  Throughout the process we were both aware that we could have stopped the Doctor and gotten her to explain certain things a little more clearly, but honestly, we’d already been through it with one doctor and we already knew the route we wanted to take.  She confirmed some things; for example, chemo was a must.  She explained the size of the tumor as shown on the MRI was more accurate than the Ultrasound image and that, although the MRI has a tendency to exaggerate size, it doesn’t exaggerate it by all that much.  She explained that she would be removing lymph nodes, specifically the sentinel nodes, from under Leslie’s arm and biopsying them to see if there was any movement, but that it really didn’t matter all that much if it had because the treatment remained the same, though it meant the other lymph nodes would probably also need to be removed after surgery.  So many things we learned.  But first we just had that meeting.  And Doctor General’s staff was so kind and considerate, and the terry cloth robes were so soft and fluffy, and Doctor General seemed so on top of things that our decision was made.  We’d been blown away and would call Doctor Professor the following day to tell her we were going to get treatment elsewhere.  We learned later that when Doctor General left her old job to work at The Breast Cancer Center, the person her old hospital had hired to fill the job opening had been Doctor Professor.  Dr. Professor was the fill-in for Doctor General’s vacated position.
We left The Breast Cancer Center with appointments for the sentinel node procedure (lymphoidectomy) and a follow-up appointment as well as a scheduled meeting with the oncologist who would handle the chemo.  Doctor General gave us a list of a few and had her staff make an appointment with one, she also encouraged participation in any clinical trials that might be going on.
A week and a half later we met with the oncologist.  We’d been warned he could be abrasive or standoffish, but we’d also been told he was the best.  On the flip side, we were told that although he may be the best, essentially every oncologist follows the same chemical cocktail recipe, at least all of the oncologists in the hospital network we were currently in, and that we could expect to get just about the same thing anywhere we went.  We walked into his office expecting the worst and were pleasantly surprised.  We were given information about a clinical trial, but also information about the standard of care we’d receive if we didn’t participate. 
He made her feel confident that she’d handle the chemotherapy just fine.  He explained to her that the drugs they used were so much better than the drugs of 20 years ago and the symptoms so much less, and that while the literature listed all the possibilities, the probablies were a much shorter list.  And most importantly he said it made no difference to him if we waited until after the holidays to begin treatment or not.  There’d be a Christmas after all!
We were almost done exploring.  Prior to the sentinel node surgery, Dr. General scheduled a bone scan.  All the familiar trepidation was there.  Every new scan brought us new awful news.  Each new procedure brought new tears.
Amazingly, the bone scan was negative.  If the lymphoidectomy showed no cancer in the sentinel node we could complete the crazy good news trifecta.
The day of the surgery I drove her to the hospital and we waited as they prepped the room and explained the logistics.  It was a slick operation with a flat panel screen giving patient numbers and their locations in color coded blocks.  The nurse at the desk provided me with a patient number as well as an explanation of what each color coded block meant.  One was surgery, for example.  If my wife was in surgery, the block would be red or green or something, and I’d look on my sheet, find the corresponding color, and learn that it meant I had about two hours left to wait.  Each color code had a one or two sentence write-up that explained what was going on, and when it would be done.  We met again with the doctor, made small talk, went over the surgery, and she breezed from the room.
Leslie was taken away and I followed her progress on my sheet and on the monitor.  When the surgery was over Dr. General came out to tell me that everything had gone well.  No problems.  Leslie would be in recovery in an hour or so.  They’d get the results of the biopsies on Friday (that would turn out to be overly optimistic).
She recovered like a champ.  She had one blue breast from dye that they’d injected in order to find the sentinel node or nodes to figure out which nodes to take, and she wasn’t allowed to lift anything over 15 pounds above her head for the next five days or so.  Doctor General said she didn’t want her to “stretch my incision”.  She spoke about the incision like people talk about their children.  Don’t you talk that way to my son.  Don’t you stretch my incision.  It was hers.  I asked her if this would interfere with Leslie’s duties ironing my shirts and doing my laundry for the weeks, and she smoothly replied that she recommended Leslie not doing any laundry or ironing for at least a year, then winked at Leslie.
We went home and Leslie rested and took pain pills.  I think they were the only pain pills she took.  After that first dose she didn’t need them anymore.  She said it felt almost like she’d gotten a brush burn under her arm after it had started to heal a bit, but the pain never got bad enough after that first day to take more medicine.
Recovery was relatively straight forward.  She didn’t lift our youngest and put her to bed, nor did she feel comfortable bathing her, but apart from that, it was business as usual.  She had a large blue stain on her breast from the dye they’d used to find her sentinel nodes, and a feeling of “brush burn” where they’d performed the removals, but otherwise she was fine. 
We waited for the results to come back.  Again, we counseled ourselves that cancer in the sentinel nodes made no difference to treatment and none in the prognosis, but they’d more than likely remove them all after radiation was over as a precautionary measure.
And there was cancer in the lymph nodes.  Not in the one or two they’d biopsied that were not sentinel nodes, but in the sentinel nodes, the primary filters of the fluids draining from the breast, there was cancer.
Again, not “woohoo” news, but not completely unexpected, this news solidified her position on the “Advanced Stages of Cancer – Stage III” graphic.  At least she wasn’t Stage IV, metastatic cancer.  When the cancer moves out of the lymph nodes into other parts of the body it’s considered to be metastatic. 
We met with Doctor General.  She gave us our options.  She even held out the carrot that if Leslie responded particularly well to the chemotherapy we had in our future she might not have to remove all the lymph nodes at a future date.  She said it was “negotiable.”  “Negotiable” is another one of the ‘little things’ that mean so much.  Good ol’ Doctor General. 
The adventure that chose us on “The Day My Wife Was Dying” had been duly explored.  It was a little scary, and a little overwhelming, but I saw and I think shared with Leslie, a definite vision of a happy ending waiting for us.
With a clearer picture of what to expect and what kind of effort would be required to get that happy ending we both wanted, we focused on who to tell, and how and what to tell them.
Continue to Chapter 3:  Here

Wednesday, August 8, 2012

The Bigger Story: Chapter 1

I wrote this part of the story back in January of 2010.  It's a long story. . . literally!  HAH!  Anyway, we'll start the story with Chapter 1.  I never ended up finishing the whole story I was writing about this back then, and now there's more to tell, so hopefully I can complete the first part and do the whole experience a little more justice.  There are three written chapters previously completed that I'll just copy and paste here from our experience last time around, then I'll have to get back to work writing again, I suppose, in order to complete the whole story.  (I'll post this one Wednesday, August 8th, Chapter 2 will be Friday, August 10th, then I'll probably set it up to post the last of the already written pieces on Monday or Tuesday of next week while we're on vacation.)

Chapter 1: Discovery  (Days 1 – 3)
Nobody who was raised even half-right (and let's face it, anyone who was raised right and has kids knows that nobody is ever raised more than half-right) likes to see a parent cry.
When my mother told me she had breast cancer I found that I felt sort of numb.  I never really think anything like this can ever happen to me.  .  And although it was happening to her, she's my mom, so it was happening to me.  I knew she needed my support.  I knew a hug would have provided her some measure of comfort.  I said the words.  I gave the hugs.  But inside I was numb.  The comfort given was almost like a rote response to a scenario that my brain understood how to handle, like a computer program spitting out the answer for x when y = mom has breast cancer.  I know I cared, I know I was concerned, but the care and concern existed outside of the ‘breast cancer’ announcement.  I cared because she was my mother and I knew she was upset, but the idea of ‘breast cancer’ didn’t seem real to me.  It didn’t seem like a genuine threat.
It's not that I disbelieved her.  It's that I was sure she was blowing things out of proportion.  It's that I knew there was some missing piece of the puzzle; some explanation that would make her bad news seem more trivial. . . less bad. . . it's happened countless times.  I wasn’t a witness to the discovery, and because I wasn’t a witness to it, it seemed less legitimate to me.  If I’d been there to ask the questions with the doctor, perhaps, I could have cleared it all up.  Nothing to worry about.
She had cancer though, there's no denying it.  I talked to her about it.  I even, after examining how I reacted to her news, apologized for not being more supportive.  I told her that it just didn't seem real to me, and that I would do whatever she needed me to do in order to help her.  And that I was glad she was seeing a doctor she felt comfortable with.  She surprised me by saying that she felt I had been very supportive. 
My mother sees the best in me.  I don't think she sees that in everyone, but I'll always be her little boy, and I was almost never the kind of kid that forced her into making the tough love decisions that are the climax of juicy family dramas on television, so I don't think she's ever really revised that view to reflect real world circumstances.  I never did drugs (still haven't).  I didn't drink to excess (at least after college).  I didn't get in trouble with the law (apart from some sarcasm-related issues no doubt brought about by a combination of alcohol, youth, and that aforementioned it-can’t-happen-to-meism).  I got good grades.  I loved my family.
I'm not sure if I should be sad that my mother felt my admitted lack of support was “very supportive” coming from me, or if she just understood me so well that she saw the concern and the support under the layer of numbness that I was feeling.  I think probably both.  Men have been lowering the bar for so long with regard to supporting their women that I’ve been able to reap the benefits by merely skating through life.  But I did care, and I did want to help.  It just seemed not real to me.  It didn't "hit home".
She's since had a partial mastectomy (which is what cancer surgeons call lumpectomies) and radiation.  She's fine.  Honest to god clean bill of health.  So I was sort of right. . . right?  It wasn't that big a deal? 
Every cancer is different though, to borrow a phrase from my autism blogging, just like every person is his own unique snowflake.
My wife Leslie and I had just returned from dinner.  We'd gone out, had a few drinks, and come home.  My parents watched the kids.  They were upstairs sleeping while my folks were watching HGTV.  We chatted about our evening with them, offering quick post meal restaurant reviews and listening to child behavior status reports and my parents left.  We were both exhausted and got ready for bed.
"Jim?" my wife called from the bathroom, as I read in bed.
"Yeah?" I answered back, not taking my eyes from the book.
She walked into the room.  I closed the book on my finger and looked up.  She was. . . fondling herself.  "I feel something."
"You mean like a lump?" I asked.
"Yeah, it's right here.  Can you feel it?”
She showed me, and I felt it.  It was a lump.  I mean, there's no other description.  Nothing on one side. . . something on the other.
I often feel my role around my wife is as foil to her panic, and I replied nonchalantly that she should call her ob/gyn because otherwise she wouldn't sleep the whole weekend.  She doubted that the gyny would be open on Saturday, but I told her that if she called and got one of those "If this is a medical emergency" messages she should process it as "whether you think it's an emergency or not, I sure do, so I'm calling" and unapologetically use it.  It can't be, we reasoned, too serious, she'd just had a mammogram the previous year, at age 39.  She was already scheduled for another in a month.
I put it out of my mind.  I do that.  I compartmentalize troubling things.  It’s a gift.  Things trouble me from time to time.  Sometimes important, important things, and I push them from my mind into a little compartment "to be addressed at a later date", but I don't address them, at least not generally.
The next day she found that indeed her gyny did have office hours and agreed to see her.  We shuttled the kids over to my parents and went to visit her.
Upon examination, the doctor said she thought it felt like a fibrous cyst (ain't no big thang) but that if she was able to aspirate it (ie, draw fluid from it with a syringe) she could prove it without any additional to-do.  We clarified with her that her inability to draw fluid from it would prove nothing; just that it was difficult to draw fluid from. . . and would require a trip to ultrasound in order to fine tune size and location or identify something more serious.
We waited nervously as she attempted, and failed, to draw fluid from the lump.  She gave us a prescription for an ultrasound and told us to have it done wherever was convenient.  We chose the same hospital, just because we figured it would make having her doctor interpret the results more convenient for everyone.
We had to wait until Tuesday of the following week, but I accompanied her to the Imaging department within the hospital.  After a few hours the procedure was complete, and a visibly upset wife greeted me from a room where she informed me that the lump did not appear to be a fibrous cyst, but that they were going to biopsy it and give us results.  They biopsied it.
The Friday before Halloween we had waited long enough, and, at the conclusion of both daughters' school Halloween parades, (since we were both off anyway) called the hospital. 
Cancer.  Invasive.
What does that mean?  We didn't know.  I ran interference with the kids while she talked to the radiologist. 
(From the other room:)
"Am I going to be okay?"
I later learned that the answer to her question had been, "There's a chance."
She composed herself and returned to the room.  She asked me to call my parents and see if they'd watch the kids.  I arranged for the kids to be taken to their house for "a movie" or something and told her to go upstairs and lock herself in the room until I could talk to her.
And she cried.  My children left the house and she cried such a torrent of tears that I thought surely if cancer did not kill her she would die of asphyxiation.  "I don't want to die. . . ", she said through sobs, and it cut my heart from my chest as I imagined my life and the lives of my children without my wife, their mother. 
And it hit home.  Yay!  I do have a heart!  Thanks for letting me know, God, next time just send an email!  I was not numb.  I was devastated.  What the hell were we going to do? 
"They said it's spread," she told me, "and when I asked if I would be okay," she continued haltingly as she tried to catch her breath through crying, "they said, 'there's a chance'." 
I failed to compartmentalize.  My compartments were full.  The need to confront and address were too pressing.  The compartments shut their doors to me and resisted entrance.  And I cried with her, at least as much as I felt comfortable crying, fearing my tears would make her even more afraid.
That was the low point; my wife, dying; my children, motherless; fantasizing about the meeting with Emma, my oldest and giving her ‘the talk’.  “Mommy's not going to be here next Christmas.”  That awful "Christmas Shoes" song was already queuing up to fill the airwaves on 94.5 FM, where Christmas music plays from Halloween through the end of New Year's Day.  From that moment on it became, at least to me, “The Day My Wife Was Dying”.
In the end it was my mother who helped save us from our despair, or at least gave us enough breathing room to make it through the weekend and get to our next doctor's visit, who stemmed the flood of emotion with her experience long enough for us to get actual information.
My wife hadn't relayed the story quite right.  'Invasive' didn't actually mean "The cancer has spread" as she had interpreted it, but was just the name given to the most common kind of breast cancer there is, the kind that starts as a tumor and can move.  It didn’t mean she was going to die.  It's what my mom had.  My mom, who had gotten a partial mastectomy and radiation and was good as new, or at the very least certified pre-owned.  That much got us through the weekend.
It has been ten weeks since my wife learned that she "was dying".  She is anything but dying.  Or perhaps, she's dying, but just as slowly as all human beings die, slowly breaking down inside and out.  That's acceptable.  I can compartmentalize aging.  I can compartmentalize aging easily.  There are no talks to children about buying Christmas shoes to meet Jesus when you still have 50 more years to live.
Really, any news apart from the news that she's dying becomes good news, which really lends you an interesting perspective. 
"Oh the tumor is three times larger than you first thought?"
"But her prognosis is the same?"
That's a gross generalization.  Not everything is 'good' news.  Each new tidbit adds to the time and energy that will be extracted and exacted, and each little factoid will make fighting the cancer that much more of "a big deal".  But it is not a "Death Sentence".  At least in her case, having Breast Cancer just means treating it, then going on with her life.
Some things every woman should know about breast cancer detection that they don't, they just DON'T:  Mammograms aren't particularly effective.  Some breast tissue is too dense, some breasts are too small, sometimes it just doesn't catch tumors.  Please don't misinterpret that to mean that I don't think they're important.  They are.
They told us that my wife's tumor has been in her system for about 5 - 7 years based on the size (extrapolated from statistical data regarding how fast her specific type of cancer grows on average I assume).  Her mammogram never caught it.  Mammography just came under fire in the news, days after we started dealing with all this bullshit, so it seems particularly poignant.  Having a mammogram is justified if it detects cancer early in anyone, at least to the person who’s just found cancer “in the nick of time”.  So the idea of not having a mammogram, while not necessarily supported by my wife's particular situation, sounds stupid to me.  Don't put it off.  Do it.  Maybe it detects nothing.  But perhaps it detects something, and now you're ahead of the curve.  And you want to be ahead of this curve, people.
My wife found her cancer via self examination; a sort of bumbling clumsy self-examination, mind you, that took the form of itch scratching, but examination nonetheless.  Who knows how much sooner she’d have found it if she examined herself more frequently.  Don’t put that off.  Do it.
Another thing, being young doesn't mean you're going to have an easier time with breast cancer.  In fact, it almost means the opposite.  You might handle chemo better (chemo in my wife's case, is a must, where it was not in my mother's case) but the odds it will return are higher just by virtue of the fact that she’s not 70 and therefore has more years of life ahead of her.  It's a statistical issue.  Your odds of a recurrence are, depending on the type of cancer and the treatment you select, about 1% every year.  10 years?  10% chance.  20 years?  20% chance.  You get it, right?  If you're forty, and live to be 80, odds are pretty good it's coming back.
But you know what?  If it does, you just treat it again and it goes away!  Woohoo!  But not if you wait too long, so start looking. 
The hospital handled my wife poorly.  They weren't expecting her to call.  The wrong woman answered the phone, put news bluntly to her that she was not capable of understanding, and then stopped returning her phone calls when she got upset and refused to apologize for how poorly it was handled.  That hospital, the hospital where my two children were born, is dead to me.  If you can’t summon the compassion to deal with a woman who you’re providing a cancer diagnosis to then you picked the wrong field on career day. 
Chapter 2 will be a little sunnier. . . don't you fear.  This journey has only started, and our direction is much clearer than it was on the day that I refer to (in my conversations with her) as "The Day You Were Dying".  It is not "easy”, but it is manageable.  Beatable.  If she dies before I do it will be of something other than cancer.  Probably of the stress I cause her.

Continue to Chapter 2:  Here