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?"
Silence.
Sobbing.
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?"
"Yes."
"But her prognosis is the same?"
"Yes."
"Woohoo!"
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

Monday, August 6, 2012

This Week and Next

This week is going to be a little hectic, I suspect.  We have friends coming from out of town with their three kids.  We have a Pirate game on Thursday.  We have vacation to Nags Head coming up next week, so we have to pack.

None of that is particularly stressful, except Lily's been a little. . . behaviory (shut up, it's totally a word) this past week.  A little more defiant, a little more fragile, a few nighttime potty accidents in a row, we suspect she may be coming down with something.

Her breakfast lunch and dinner routine's have been a little more dicey.  Her top front tooth is a little loose (I think.  Leslie reached in there.  I didn't tempt fate) so maybe that explains some of it.  I just hope she's alright for the visit.

Yesterday, in an effort to get the packing and organizing started for the trip this Saturday, Leslie and I dropped Emma and Lily off at Grammy and Pappy's house (Leslie's parents).  The idea was for them to take the kids to a movie.  We have three relatively successful trips under our belts so far, so we figured it would be alright to give it a shot.

As we we drove to their house, I saw a large glass-front building ahead and it prompted a memory.  I was thinking of a place we went for a wedding reception and ate in a banquet hall.  I asked Leslie, "Didn't we have dinner there once?"

Leslie was playing solitaire on her iPhone.  She's been playing solitaire on her iPhone for the past four weeks straight.  I can't play more than one game of solitaire in a row without being bored out of my skull, but solitaire to her is like a visit to the spa or something.  She glanced up.

"Where?"

"Over there," I pointed as we drew closer.  She glanced at it as we passed before returning to her solitaire game.

"That's a mausoleum, Jim."

So many responses occurred to me then. . . zombie references mostly, but instead I just sort of meekly replied, "Probably a different place then. . . "

She glanced sidelong at me but didn't otherwise react.  She's a good straight man.
Zzzzzzzzzz (File Photo)

Meanwhile, Lily slept in the back seat.

We dropped the kiddos off and drove home again.  We inventoried and made lists and then hit Sam's Club and Target, picking up snacks and sunscreen and paper products and DVD's for the ride before cashing in on a couple Applebee's gift cards that we'd received for supper.

I don't know that Grammy and Pappy really got dealt a great hand that day, Lily-wise.  For starters, there was a thunder storm, and thunder makes Lily very apprehensive.  So she started out the movie (Madagascar 3) disinterested, then I imagine she wasn't spectacularly happy about the thunder, then apparently the movie theater had a power failure, Lily had an accident, and ultimately, they ended up leaving early.

Next time. . . next time.

They brought the kids home and Lily systematically ate all of Pappy's fries.  She was SO.  WOUND.  UP!  They fed her McDonald's before the movie. . . because that's what you do when you're attempting to set yourself up for success on a Lily Outing. . . but she was SO hungry we accused them of not feeding her.  Then Emma spilled Pappy's McSlushy thing on the floor and then after we cleaned it up they took off and Leslie put Lily to bed.

Lily is a wonder.  She can be SO high energy one minute, but when she's in bed, no matter how much she protests that she's not sleepy and doesn't want to go. . . she's out in 5 minutes.  It's a strength.  I think she gets it from her mother who is a gifted sleeper herself.

Back to me. . . my boss just got back from vacation, and I have to get everything in order for MY vacation, so you may not see much of me for the next week or two (can't imagine I'll be spending much time online once I'm at the beach.)

There's still that looming big story that some of you are now aware of, and I'll probably address that starting sometime next week, unless I edit what I've already written about the history of it and post it later this week just to end the suspense.  All the suspense.

What do you mean you mean there's no suspense?

Wednesday, August 1, 2012

No, This isn't the One. . .

. . . where I talk about the big story that is overshadowing all the little stories and creating busy-ness in my schedule.


THIS is the one where I talk about how Lily has decided to latch onto the Wimpics (sic) and how in particular she has latched onto "cycling".  


Cycling comes on over the main feed on NBC, and I swear I have no idea why, but it does.  So while they cover cycling, they also slide over and cover Sport A and Event B, because the cycling race coverage lasts for. . . SIX HOURS!!!

This means that there's a sport that will occupy Lily's attention, a WIMPIC sport at that, that will occupy her attention for LONG periods of time.  While it's going on, she'll mutter color commentary under her breath.


"Oh, she pedaling her bike."
"She got stuck.  Fall off her bike and get hurt.  It's dangerous."
"Red bike!"


And so on.


Unfortunately the lamp in my TV blew up a few days ago, so we can't capture her attention that way, but the iPad saved our collective asses with the NBC Olympic app that literally has all the video of every sport available for streaming.  That means I can stream 6 hours of cycling to my daughter's delight!  


NBC has kind of sucked during the Olympics, but this app (though it as its issues) has been a godsend for Lily.  "I want watch Wimpics."  Done!


And we (my wife and I) have our individual pet peeves about what Lily watches, but right now it's either that or "No No" (Which is Lily-speak for High School Musical), "No-No Summer" (High School Musical 2) or "No No 3" . . . and however much you may love Zac Efron. . . I'm so. sick. of those shows.  I'd rather watch Barney, Wiggles, or Mother Goose Rhymes at this point.  


So while my wife is all, "Cycling?  Really??"  
I'm all, "CYCLING!!  REALLY!!"


---------------


Yesterday I took Lily home from OT and she was thirsty.  We had gone to McDonald's (therapy day is McDonald's Day in Lilyland) and she SHOULD have had some of her drink left, but I'd tossed it.  Instead she asked for what her mother drinks.  From the back seat:


"I want Diet Coke."


"Sorry baby, Diet Coke's all gone," I replied laughing (I'd never heard her ask for Diet Coke.  I don't think I even realized she'd heard it referenced.  She asks for my Pepsi when I'm drinking it at the table and I'll give her little sips, but that's about it).


"Oh no.  Diet Coke is all gone.  Can you email me Diet Coke?"


"What?"


"Can you email me Diet Coke?"


I couldn't help it, I laughed.  I love how she absorbs new words, and I'm not sure where she picked up the context for this, but I think it's pretty cool usage. . . email defined as "send", or perhaps "give".  She's not far off.