Grief, Condolences, and My Worst Fears

The internet is a many splendored thing.  But for all the good that it does, I believe that none is greater than the incredible connectedness it facilitates between people.

Not just random people, but people you know.

I'm fortunate to have sort of reconnected with most of my old Girl Scout troop, thanks to Facebook.  The girls who were my closest friends when I was in third or fourth grade are amazing women these days, and I know this not because we've kept in touch, but because we have the ability to simply check in on each other.  We don't need to keep track of addresses, or phone numbers... we don't need to even really communicate.

One of those girls, who filmed a short biopic of William Penn with me for an elementary school class, writes a feminist entertainment blog that I find myself referring my "IRL" friends to on a fairly regular basis (she's The Funny Feminist).

It's not just people I know a long time ago, either.  It's friends who have moved away.  Or friends who I have moved away from.  I know all about the illnesses of children of my friends in Michigan, I get to see birth announcements, and nursing pictures from JS and her brand new baby girl.  I can joke with my friend stationed in Texas about Star Trek and Firefly.  I can let friends who just live on the opposite side of the city, which is much harder to get to than it sounds, know when I've seen an episode of Yo Gabba Gabba that reminds me of them.  With minimal effort, I can maintain contact.  Through blogs, through facebook, through twitter, and yes- even through email.

And let's face it, effort is hard to come by a lot of the time.  It's hard to muster up the time and energy to sit down and write a letter, address it, and stick it in the mail.  It's hard to find the time to have a real telephone conversation.  There are a million distractions, between the children and the homework and the housework and keeping up with your family and maintaining the more active friendships you keep with people you get to see on a regular basis.  And there are times when you do have a moment, and you just want to stop and BREATHE and not be inundated with any kind of stimuli for a few blessed seconds.

And so the internet allows you to be a better friend, and a worse friend, by letting you get away with a lot of friendly stalking in lieu of more conventional communication.

And I don't know if it's just my generation, or if it's a new standard... but for the most part it seems that we're very happy with this.  It's great to know that my art school buddy is doing such amazing things with her photography- particularly her food pictures.  It's amazing to hear when a friend I haven't seen in literally a decade finishes a novel.  I'm thrilled to know when my distant friends are pregnant.  I love seeing what their kids dressed as for Halloween.  I feel connected to them, even if I don't let them know every time I think that some development in their lives is fantastic.  Or even interesting.

At any rate, I have been particularly lucky to be connected to my friends in this manner for a very long time.  I was an early adopter of the stalking-instead-of-communicating friendship style, as the majority of my old friends are techies.  System admins, designers, internet entrepreneurs, that's what the bulk of the people I began stalking/keeping distantly in touch with did.

One of those friends, and once upon a time more than a friend, moved to Texas some years ago.  Via the wonders of the internet, we sort of followed up on each other for that whole period.  When he'd come to visit, occasionally he'd crash on my couch.  In fact, it was him that introduced me to almost all of the people I now consider close friends.  Sort of.  He was much braver about making friends from the internet than I was at that time.  He taught me a lot about judging (and not judging) character from a photo and answers to a lot of mundane questions.

I supported him morally, as much as I could, through his custody battles over his son.  I held my own little internal celebrations over his successes.  When he got married, I was so genuinely happy for him.

When his wife got breast cancer, I offered my support.  I knew what that felt like- going through the chemotherapy, the wondering, the fear...  M and I had already moved onto our post-chemo, time-to-start-a-family phase of life.

And she got better.  And they decided to have a baby.

"Lanes," from XKCD

...and then she got worse.

Despite not having ever met her, or exchanged any words- digital or otherwise- with her, I followed her progress as much as I could.  She blogged about it, and I confess I read infrequently.  I just couldn't process all of what I was seeing.

I was reading my own worst fears.

This past weekend, Reesa, my old friend's wife and the wife of their eight month old daughter, lost her battle with cancer.

Even typing it has me in tears.

I imagine what my friend is going through.  What all of their family is going through.  I couldn't help myself vividly imagining that situation over and over throughout my pregnancy with the girls, M finally being through chemo and still... wondering...

And through this pregnancy thus far, it has been a recurring fear again- only for myself.  What if I missed some mole somewhere, and there's melanoma growing unchecked?

I never used to fear death, but these days I do.  Not because of what it holds for me, but because of what I would have to leave behind.  What it would be like for M, raising our children without me.  What it would mean for our girls, to grow up without a mom.

It keeps me up at night sometimes, it truly does.

I'm not so self-absorbed that I believe that they wouldn't function at all, I know that they would find a new normal... but what?  How?

And dear lord, how much pain would it take to reach that?

My heart breaks for my friend, for his children.  I ache to just hug him and tell him how sorry I am and how deeply, how very deeply I wish I could somehow fix it.  Somehow.  I would do almost anything to make it untrue.  Or to make it in any way better.

I remember clearly every single moment that made up M's treatment.  I remember the moment, the day after we had gotten engaged, that his coworker called me to tell me that he'd been taken to the hospital.  I remember the look in his eyes- a combination of terror and pure relief- when I stepped into his little nook at the ER fifteen minutes later, already wearing my pajamas for the night.  I remember five days later, almost six days to the moment after I told him I would marry him, that his surgeon told me he had less than eighteen months to live.  And I remember the day that, confident that he had beaten those odds, and that he was as "cured" as he was going to be, that we decided to have a baby.

It's the most natural thing in the world- this post-cancer family building.  You spend so much of your energy making sure that you have a future... and suddenly, you do.  But you're already an adult, and your dice are mostly cast.  Most of the 20-something-and-cancer-survivor set that I know, and it's a remarkably large group, go directly from news of remission to starting a family.  You've already paired up- you've already made the decision that you WANT to have a family.  And now, every day is a gift.  You get to do what you want to do, and you have the sense that there just might not be very much time.  That it isn't a matter of "some time in the next decade I want to have kids," it's a matter of, "If the cancer comes back, how much time do I want to have SPENT with my kids?"  And the answer is utterly simple.  "Every single moment I can."

You don't know how long you're going to have.  You have this nagging voice in the back of your head that doesn't say "if" the cancer comes back, it says "when."

And as the spouse of the survivor, you are right on board.  You also want to give your spouse everything in life that they want, help them to make the most of each minute.  When that means starting a family, it means that you are one hundred percent invested- committed.  And that is terrifying.  I have spent more hours than I care to count contemplating the life I might lead- widowed, with two (now three) children to support without M.  Maybe without having completed my degree.  And my choice has always been the same- the older my children are, the better.  I want them to have KNOWN their father.  To have meaningful memories to comfort them if he should die.  To carry on in his footsteps, KNOWING that he would be proud.

I understand what my friend must be going through right now.  I don't know, but I completely understand.  I understand the choices that he and his wife made.  I understand their choice to have a child when they did.  I understand the constant second guessing and worry that accompanied a pregnancy.  I understand all of the post-partum choices that they had to start making as soon as their daughter was born.  I understand what the news that while she had been pregnant, the cancer had metastasized in her spine meant to them.

I haven't seen him in about three years.  I had never met Reesa.  But I grieve for her.  I grieve for the months that my friend spent without sharing the news of her progress, that she didn't blog about it.  When I thought all was well and I was wrong.  I grieve for every moment that my friend's family spent in the hospital.  I grieve for every day they have spent since Reesa passed, wondering and blaming themselves and feeling alone.

As much as I want to say otherwise, I know that my friend must feel alone.  Despite the outpouring of support of all of his friends and family, despite no doubt having planned for this awful time before Reesa passed... despite all of that, there is no doubt that there is nobody on this earth who can truly share his pain, because there is nobody else on this earth who could have loved his wife the way that he did, and who shared the deepest parts of his soul.

And all the friendly internet stalking in the world can't convey that.

If temujin9 is reading this, I love you.  I will always love you.  And you will get through this somehow.  And I am so, so, so sorry.  And I wish there was anything I could do.

And I pray that you find peace with what has happened.

And if there was any way to send a shoulder across the interwebs for you to cry on, it would be there for you now.

RIP Reesa Brown

College and Parenthood

I'd like to say, just for the record, that being a parent at the same time as being a student is hard.

Really, REALLY hard.

No matter how much I complain about the falling standards in academia, the fact remains that being a student takes time.  And time is the one thing that parenthood completely takes away from you.

M asked me what I wanted for Channukah or Christmas.  I told him I wanted a week,  Somewhere right around... now.  A week where I could work on my final projects and presentations, a week where I could catch up on all the reading I've missed over the semester, a week where I could just sort of not be a mom for a bit.

Which is, of course, impossible.  You never get to stop being a mom.  You never actually WANT to stop being a mom.  Just as I know M never wants to stop being a dad, even for a minute,

Do you understand a word of this?

M definitely has it harder than me.  He's working full time, he's in twice as many classes, and his classes are just plain harder.  I look at his homework and the only thing I understand on it is the date.  The math for advanced concrete structural dynamics?  Is that even what the subject is called?  It's impossible.

And somehow, M has to find the time to do his homework.  To take his online classes.  To study before his tests.  Somehow, he has to find the energy to be up and out of the house at five in the morning, work all day, and be at class at five o'clock that evening.  And then stay on campus until late at night working on homework for the next class.  Some weeks, M goes from Sunday night until Friday night without seeing his children awake once.

And me?  My school work is completely different.

I have to find time to do fieldwork, interviewing grocery store owners about the changing demographics of their clients.  Visiting markets and roadside trucks full of fruit to gauge the availability and price of produce for the residents of Chicago neighborhoods.  Touring abandoned warehouses that are being reinvented as breweries and bakeries.  And I can't do that with my kids.

Then I have to go home, and make sense of that information.  Turn it into cohesive papers, presentations, notes...

It's still a lot of work.  It's still incredibly difficult.  And I have to do it while I'm outnumbered by small people who desperately want my attention.  Who want nothing more in their lives than to spend their day playing with me.

And I, of course, want nothing more than to play with them.

I want to spend my days taking them to playgrounds, to museums, to playdates.  Instead, I put on cartoons so I can sit at my computer and manipulate powerpoint presentations.

M and I are students, we can't afford the sort of childcare that would let us do all the studying we require.  We can't afford the time to have things like a clean and tidy home, we just plain don't have the time.  And still, we try our damndest to make sure that we still get to spend time as a family.

Days like this are a huge educational sacrifice.

Whole days, where we abandon our homework in favor of taking our kids somewhere fun, somewhere that we can share a new and exciting experience with them.

Or even just to a restaurant to get ice cream.

Because children take more time than anything else.  And any time you take away from them feels like time that you have absolutely lost.  Time that you can never get back.  Time that you have somehow wasted.

It's not time wasted, it's time invested.  And we know that.  We know that once we're finally done with school, once M has his Master's in Engineering and FINALLY have my Bachelor's degree, we'll be able to have a better life.  One where we can actually take family time.  One where we get sick days, and decent insurance, and a whole two weeks to go on a real vacation.  A life where we can afford to give our kids the sort of life that we knew growing up.

That's why we're in school.  That's what we tell ourselves every day.  "This is a means to an end.  This will be over soon.  And our lives will be so much better."

Last night, M had his first final of the semester.  He thinks it went pretty well.

Next week, we'll finally be on break.  We'll have a few blessed weeks in which we live like "normal" people.  People who aren't trying to live two lives at once.

Where I would always rather be.

And next semester we'll do it again.

And over the summer, I'll do it again.

And then?  Then we'll be done.

And our lives will be so much better for having put in all that hard work.  For losing all that time with our children.

We'll be able to give our children the lives they deserve.  Lives where we are free to be with them.

Pouring My Heart Out

There's something I've been meaning to write about for a long time, but I haven't known how to say it.

And, for a not-quite-as-long time, I've been reading some posts from Pour Your Heart Out with Things I Can't Say.  The idea is to just let it out.  Say all those things.  Or, at least, write them.  So... here it goes...

People never seem to know how to react to the information about my husband's medical history.  It comes up fairly frequently when meeting new people, because of the standard litany of questions that people ask.  It comes up a lot at the beginning of a semester.  It comes up a lot when you see somebody you've known for a while, but only vaguely or professionally.

I feel like I have this rehearsed speech, "Hello, my name is Lea, and my husband is recovering from brain cancer.  No, it's not in remission, it's not the sort of cancer that goes into remission, but it's essentially gone.  They haven't been treating this kind of cancer successfully for long enough to know what 'cured' means.  He's doing fine.  He's doing great.  It's a miracle."

And so on.

And as people get to know me, or us, they start to ask questions... questions that people who knew us before would never ask.  Questions that are just plain ridiculous, but people want to know.

When you meet somebody, there's just a big question mark for their entire lives before the day you met.  You don't know how they've changed, what they used to do, how they used to act.  And when you hear that something BIG happened to them, it must be hard to simply assume that before they were pretty much exactly the same as they are now.

And so, once in a while, somebody asks me a question like... "If you had known that M had brain cancer, would you still have gotten engaged to him?"

Yes.

Unequivocally.

M and I got engaged about 16 hours before the events that led to his diagnosis.  I had known that I wanted to marry him ever since we started dating.  It wasn't exactly love at first sight, but he knew it, I knew it, and most everyone who knew both of us knew it.

Something as stupid as cancer wouldn't have made any difference.

I say that now, with the full hindsight of knowing that he survived.  That he is surviving.  Knowing that he got through it.  That he's come out the other end fundamentally the same person.

So far.

There are still questions.  We had been told at the very beginning of treatment that there would be side effects.  You can't irradiate somebody's brain and not expect some... well.... brain damage.  And we'd been told how long it would take to see it.

Well, now we can see it.  It's little things.  A bit of short term memory loss, fatigue, tiny changes that don't change who he is, but when you know somebody inside and out you notice.  Like no matter how many times I tell him what we're doing this weekend, he's still going to forget what we're doing this weekend.  Tiny little things that don't seem important, his brain is willing to just let go of.

And, as they told us four years ago, the long term side effects are completely unknown.

They hadn't been curing people of malignant brain tumors for very long.

Uncle Mouse and I had a talk about this.  We were in the car, I was bringing him to the airport to propose to his (now) fiancee, and he asked about M's short term memory.  And what the future looked like.  And if I was scared.

He's the one person who can get away with asking me the questions that came next.  He was on his way to propose, and the same summer that M was diagnosed with brain cancer, he was diagnosed with a bizarre and (so they said) fatal condition of his own.  He had a calcium deposit growing inside his spinal column, and the doctors had estimated he had two years before it completely severed his spinal cord.

And after all his own experimental treatments, after all the turns his own life had taken, he was about to propose to the girl who had been by his side throughout the ordeal.  While the choices M and I made involved me quitting my job and having kids right away, the choices that Uncle Mouse made were about his own career goals- a person who becomes randomly paralyzed can't very well become a fire fighter.  He had been through depression, addiction, and so much pain....

He had the right to ask what it's like to marry somebody when you don't know they're going to live.

I told him that if somebody had told me that he would die six months after our wedding, I would still have married M.

That if somebody had told me that they KNEW the long term consequences, that in ten years my husband would begin to lose all of his long term memories.  I would still have married him.

That if somebody told me that he would have a resurgence of the cancer in five years, that we'd have to go through it all again (if we were lucky), I would still have married him.

That maybe I'm young and stupid, or I was young and stupid, but that I thought that marriage was about taking care of somebody in sickness and health.  And as far as I'm concerned, promising to promise to do something is the same as promising to do it.  Which means that the moment I told M that he had two months to pop the question or I was going to do it first, in my own mind I'd already walked down the aisle.

I have no idea what the future holds.  Nobody does.  When you're in love, and especially when you're young, you have this idea that you're going to live happily ever after once you get married, but that's just not true.  Once you get married, you live.  And sometimes that means you get sick.  And inevitably, it means that you will die.  Someday.  Somehow.  It's not something that most of us ever want to think about, but there it is.

Could M's cancer come back?  Yeah, it could.
And he could also develop Alzheimer's.  And he could go blind.  And he could become a diabetic.  And he could get in a car accident.

And I could get in a car accident.  Or I could get breast cancer.  Or I could have a heart attack.

Or something could happen to our children.

Or our house could be hit by lightning with all of us inside and we could burn to death in minutes.

That's the nature of the future.  You just don't know.  No matter what has happened in the past, you can't extrapolate the future.

I married a man with brain cancer,  believing with every fiber of my being that he would get better.  And he did.  I suppose he just as possibly could have not.  And that would have changed nothing.  Except that instead of an ache in my heart where the ideas of life without him live, I would have a much bigger pain, an unimaginable pain, of having lost him.

But it would never change my love for him.