Taking Back the Day

I had a radical idea yesterday morning, during one of the 57 drives I do each week.

I can take back April 5. 

Take. It. Back.

In our family story, April 5 stands as one of the Quadrangle of Worst Days Ever that we had (right up there with Diagnosis Day and Possible Malignant Transformation Day, nearly tied with Progression After 5 Years Off Treatment Day…). The day haunts me.  And Facebook keeps helpfully reminding me of how nervous we were before April 5, 2012,  how desperately sort of hopeful we were, even though we knew G didn’t seem to be doing well.

5 years ago, April 5’s MRI obliterated our hope.

I know. That’s a long time ago.

Here is the problem: I am a History teacher. Remembering the past is my JOB. Literally I get dollars to dissect the past with nearly 70 students each day.  The great irony of what prolonged stress does to memory is not lost on me.  Thank God for Post-It notes. But the varied dates of medical smite that fill a decade and more of our family history—I can’t shake those memories, and trying to understand them, trying to gain some kind of perspective is the only way I know HOW to manage them.

Or denial/avoidance, but that is another story.

Our neuro-oncologist used to routinely ask me to “tell our story” to new medical students, knowing that it was my weird party trick, being able to recite a litany of dates/chemo fails/statistically improbable complications/more dates/random sarcastic jokes/things that only happened to our G/dates and dates. I can’t remember what I did yesterday, but the medical yikes—I remember.

So my drive time idea was pretty radical.

Take back the day.

Some days can’t be taken back. Diagnosis day is always going to be tough, it’s the center of our personal timeline of Before Tumors and After Tumors (we are now in the Year After Tumors 12.5). We remember it as a survivorversary, but it’s still a tough one to navigate each year. Progression Day is also tough. Restarting EVERYTHING with a teen who could understand things much more than a 6 year old could was brutal—especially since I had to be the one to tell her that we had to start up chemo again, after brain surgery the next day. I am not sure I know how to reframe that memory of the moment with my child in a waiting room.

But April 5—I can take that day back.

Because yes—it was horrible. It was a dark, miserable, son of an unprintable punctuation marks in a row kind of day. It was a day ONLY describable in 4 letter words that need to be spat out. BUT…

Today it doesn’t matter.

Unless docs talk about that trial in what seems to me to be a cavalier manner (*cough, which never, ever ends well), it doesn’t matter to our family.

Because 5 years later, G’s tumors look better than they have in years. Not that tumors really ever look good (“spring ’17, the tumors are wearing a subdued palette of less enhancement and maybe even slightly less mass effect! Stunning Detail!”)—but the horror of that day IS a memory. The next chemo shrunk that horrible, catastrophic growth. Nothing has been easy since then—G’s school challenges and ruptured appendix and whooping cough fest were all AFTER this day—but WE ARE STILL IN THE GAME.

And that merits taking back the day.

I am not exactly sure how to do it. Wednesday is our “nobody home for dinner” day, and somehow in my mind taking back a day always involves food. But even if I just try to remind myself all the day, Hey, WE ARE STILL IN THE GAME. G IS DOING GREAT. CADBURY IS IN THE CLOSET. WE HAVE A DOG. IT’S SPRING. I JUST GOT A SWEATSHIRT WITH HAPPY BIRDS ON IT. Pretty much anything to stay in the moment of today…

I consider that a win.

So we’ll see how it goes, this radical experiment of mine. Can I NOT wallow? Will I eat my 3^rd bag of Cadbury? Does anyone else in my family even remember the day? Does that even matter?

But come hell or high water, I am going to try to take back April 5, to have it just be a springy day of promise and potential. And Cadbury, likely.

Taking back the day.

Let’s do it.

*****************

So I wrote this last night.

I woke up this morning. Birds are singing. Dog pooped right away (without needing to sniffle every blade of grass on our street).  I only had to yell at 3^rd born three times to get her out the door for school.

And you know what I realized? I am the only one here bound by that day. Nobody else in the house remembers. And as I walked the dog, and felt some of the old erghleyugh rising up, I looked at the trees, the birds, the spring flowers starting to bloom, and I know that old April 5 is just that. Old.

And FB reminded me this morning…yes, that day was awful. BUT—the rememberings are all posts by our friends and family who were hurting FOR us, praying for us, rallying hope and good will in our direction—usually marked with pictures of my smiling warrior.  THAT is what today needs to be about. I know those folks will likely all get reminded about this today too—

hey everyone. this is Kristin's sister Laura posting this for her: G's scan was not good... Thank you everyone for praying. We are going to Plan B and G is actually taking it remarkably well...we are trying to be super positive for her.

Thank you, friends and family.  We love you all so much.

Today I WILL let myself off my Lenten car silence thing –there will be music. I will eat Cadbury. I will take this day back as the day our friends and family stood with us and held us up when we were falling.

We’ve had 5 April 5ths since that bad one. I claim those as a win.

NOW let’s break out some Cadbury and some Safety Dance and get this day going.

Enter Reality, Stage Left...

Well then.
Two blogs In The Same Calendar Month, full of promise and resolve and perhaps a little bit of this:


la la la la laaaaaaa!

Yes. I was wearing yellow in those blogs, free of my high school friends agreeing that yes, yellow makes me look like a dead fish. And I can leap and dance and leave a trail of rainbow sparkles. Yup.

So then I hit post, and as if on cue, my old buddy Reality showed up.   He has lots of eyes and tons of grippy little arms and teeth. Oh yes, he does bite. Ahem.

My buddy, Reality.
He can do all the hand motions for YMCA at the SAME TIME, but that's about his only positive attribute.

Sometimes being positive and proactive is really, really challenging. I find that the challenge increases in direct proportion to me stating publicly that I’m going to be positive and proactive. I guess it’s like saying to the world “I AM GOING ON A DIET!” and then going to Costco at Free Sample Times when every sample is deep fried or sugary cream filled goodness. Or both. Alas.

I promise that this isn’t going to just become a weekly dose of existential crisis.  I just know when I read really positive proactive cheerful blogs I generally have a moment of whoa. That person has it so together. I JUST WANTED TO ELIMINATE ANY CONFUSION ABOUT THAT HERE. So. Not. Together. I figured I should acknowledge that post my blogging of light and energy and huzzah, Things Hit the Proverbial Fan. Those things were not smiling stars, those things that hit the fan. Although really, they’d stop smiling pretty fast if they whomped into the Vortex Windtunnel Fan-tasmic .

This week was way full of the Reality that tends to shut me down.

 

Trying to practice "don't let the perfect be the enemy of the good"...so this pic is blurry and rushed--and posted, not procrastinated. But this is how it looks. And yes, that is actually what I'm wearing right now. Sans actual green guys.

Work, home, medical yikes (scan week for my baby, who is WAY old enough and WAY observant enough to get that scans Don’t Always End Well--although thankfully, hers did end well), devastating medical  news for 3 friends of ours, heck, even a lot of rainy days…this week was way more Boo than booyah. Waaahaaaaay more boo.

So the question becomes What Do I Do when my ol’ friend Reality crashes with my attempts to change the reality of my responses?

I have to admit I did finally open my Cadbury balls and yes, there was at least one brief marathon of Hoarders watching. BUT I have also tried in those moments of intense anxiety or frustration to breathe. Just. Breathe. To try and focus. To try and NOT jump immediately to scary (harder than you might imagine. Ergh.)

Baby steps. It’s all about baby steps, even if those steps are sort of tangled up in my many armed friend (who never travels alone). 

How do you all deal with intense stress or chronic stress/frustration situations?  I have tried slightly reducing my caffeine again, I am still exercising (4.1 miles run today! Woo! Only possible because of midterms at school, but I’ll take it), I am trying to read cheerful books, I am trying to breathe and pray in those moments of Tripping the Ugh Ughtastic. But what do you all do? 

Reality is with us, too much sometimes. Some people carry Reality so gracefully, not like my zombie shuffle. What is their secret?

So the truth is out. The rainbows end somewhere. But really, I guess THAT is where the work begins.

And I still have more Cadbury left—voila! the stars are smiling again. ;)

Of Lent and Loss

This is too long, again. I shouldn’t write within 96 hours of looking at brain scans full of tumor, but that is when the Words Need to Come Out so I don’t go all Violet Beauregard and risk popping. You all are better than therapy. No joke.


So it is Lent again, and I can’t help but think “LENT” in sort of the same way that Jerry Seinfeld used to say “Newman….”.

Over the last few months especially I’ve been plagued with a deep sense of loss and a nagging sense of the passage of time. When you have 5 years of precarious stability and that feels like a heartbeat in the face of restarting treatment, time takes on new meaning once again. Five years was nothing, and at the same time so much MORE than what many of our friends get.

Plagued is the best word for it.

Since the new year I have been trying to make sense of the ever growing moments of loss that just keep showing up… loss of trust… loss of honesty … loss of joy … loss of hope on fronts OTHER than brain tumor… loss of hope on that front too, some days … loss of relationships… loss of excellence (or the hope for it, more accurately) … loss of camaraderie… loss of dreams…

Some of these things are in my own home, some are due to our medical situation, some in the places I go each day in normal life, few of them are within my control.

As a Card Carrying Control Freak, this list makes me lose sleep daily, because I NEED to control them. Ahem.

Maybe for Lent I should just be a hermit. I could move rocks around, and control my little cave or yurt or whatever…

I have tried to be a rock and an island (which of course feel no pain and never cry), but that hasn’t worked out great, because I am plagued by honesty, too. I can’t be fake. I have tried throwing myself into things 150% only to find that ultimately, it is a 150% that doesn’t heal the losses that follow along our 8 year path like vultures.

Hey, it’s Ash Wednesday, and I am Catholic, you’re gonna get extra gray and dismal today, what can I say? And I drove under trees full of vultures yesterday on my way to work. Ugh.

Although honestly, this plague of loss and time have been with me for a while, just the last 6 months or so have brought everything into stark light.

And as we lose things, some of which can’t be regained – some of which are so deep I can’t blog them here, even though I wish I could just be honest and yell out the hard truths we’ve come to see over the last several months (both me & spouse—it’s a family plague, nothing brings a family together like a plague)…at the same time, I feel like time is racing on, and the opportunities to regain lost ground or at least find a new ground to stand on are slipping by.

Ashes to ashes and dust to dust…

(says she who hasn’t been to Ash Wednesday Mass in years. The ash thing messes with my Extreme Need for Personal Space, alas. I think you miss the spiritual benefit of that Mass if you are crawling out of your skin the entire time. But don’t worry, I feel appropriately guilty about it, even if it’s not an HD of O).

For us, our daughter’s diagnosis in 2004 was a massive earthquake, a 9.8 on the Richter scale (subsequent events got us to 10, but whatever). In the immediate aftermath of diagnosis we tried to continue with all the things that had anchored our life to that point—family outings to baseball games (where of course our daughter fell and hit her head 2 weeks after brain surgery), Rutgers homecoming (where she had a massive OCD freakout and tried to pull away from us, screaming and crying in a crowd, so she could “re-walk” a piece of pavement until she got it right), prayer group meetings (where I sat outside the main meeting room with a jacket spread on the floor so my daughter could lie on my lap)…we tried so hard.

I tried to keep writing, we tried to do service things with the prayer group we were involved with, I volunteered at my son’s school, we tried and tried to hold on. And for a while we did, even through some really dark times, even through meetings at school where people asked how our daughter’s frantic behavior should be addressed as a character issue, through endless days with G coming into our bedroom at 3 a.m. because she felt horrible, of the constant stress of never knowing if her counts were going to bottom out and we’d be racing back to our hospital 2 hours away for more transfusions, of our other children sleeping in our room every night for 2 years because they were afraid we’d end up unexpectedly leaving for the hospital.

Every night. For 2 years.

PTSD is real, people.

And so many people helped us, in the first 3 months of G’s diagnosis I never cooked (I didn’t eat much, either, but that’s another story), my mom’s friends fed us for months, when G couldn’t handle her 1st grade classroom a group of ladies from our prayer group volunteered to come in each afternoon to work with G one on one…every day…for months. Three of my friends who later died of cancer made a point of sending G cards regularly when she was on chemo, just encouraging her because they knew how it felt (Nora * Denise * Marge) . I will NEVER forget those acts of kindness. Not ever.

Since the darkest days of 2006, our world has been rocked by aftershocks of that first initial earthquake…moments that rattled our foundations. So many things we thought were true, we now know are NOT true, or at least aren’t as plainly true as we always believed. The fragility of life trumps everything, and we hang out in circles now where we see that our earthquake was only one of many—so many families bear these losses and these pains.

The aftershocks continue, and every time the dust settles I see another loss. Most of our closest friends/family don’t live here anymore (I am so grateful for my family, who, despite our distances, somehow manage to stay close), and I don’t know how to bridge distance very well. Some relationships have been irrevocably damaged because of a loss of honesty…and that can’t be fixed. In the last six months I have come to realize in multiple situations that if someone cannot acknowledge that they are being dishonest —maybe they truly don’t understand, which is mind boggling to me, how can you willfully not try to understand things?--, if this is the case, you can’t fix things… it’s a philosophical concept called contradictory diversity—and you lose. Everyone loses. And the loss of relationship is always a sad loss.

There just isn’t anyone to TALK to about things (hence the Miserable Manifesto here), I am no longer at a point where I can randomly join a nice group of people and unload my trunkload of woe on them. Talk about junk in the trunk…yeeks.

Despite the way we raised our kids (or tried, before diagnosis and in those early years), not all of them always make decisions we are ok with (understatement of century). Seeing THEIR wounds (again, especially in the last few months) just rattles our world again and plagues our sense of having anywhere secure to stand.

So when we roll around to Lent again, a season of sacrifice and penance, I just don’t have a lot left. Yeah, I can give up chocolate (not gonna happen), or coffee (you don’t want THAT to happen) or do all the little food sacrifices I used to so scrupulously do when I was younger…but now I’m not sure any of them mattered. Did they make any kind of spiritual difference? Did they bear any lasting positive results? I think this Lent I want to try to do positive things to at least find some footing amidst the aftershocks.

I need to try and forgive. And I don’t know how to do that, when it’s years and years of hurt, how do you do that? But I have to try. And I have to make peace with our losses. I have made peace with my daughter’s illness. I have. It is what it is. But I am not always at peace with what this illness has cost her. This I am reminded of a lot recently. This illness has cost her so freaking much. And she is just a kid. I need to try and make peace with this so I can best help her be the beautiful young woman she is meant to be—even if that isn’t the same as most other 14 year olds. I need to make peace with that.

This morning we put out a little candle and said a short prayer with our girls (our son leaves early for school, and it’s never pretty getting him out the door). This is a teeny tiny first step—not that I think God Will Send Downeth His Mighty Hand or anything, but it’s a little Lent thing we used to do, a little foothold, a moment to focus at the start of the day and not let the earthquake drop us before I even get my second cup of coffee. I did a quick 20 minute workout again, which hasn’t happened in the last few weeks more than once because of work (I spend 2 hours before going into work every day working at home)—I have to prioritize my health again. I will TRY to spend a few minutes a day nurturing connections with people. I will keep Christmas the whole year through…

Oops, got carried away there.

I know these things won’t make the losses go away, the losses of so many of our family’s hopes and dreams. But I hope if I will myself past the paralysis of cumulative loss and try to dive into the time we DO have (instead of just clinging to the good things—I want to embrace them and drink them in), maybe I can find some footing again, and help my spouse find HIS footing, and hopefully find solid ground amidst the aftershocks.

I know that a lot of folks who read here might have insight on this. Where do you find your footing amidst the aftershocks of bad stuff in life? How do you let go of the things you can’t fix (and I don’t just mean medical catastrophe)? I have tried so many things…

How do you forgive? How do you forgive when the folks you need to forgive seem to not get that there has been so much wrong done? Really, these are not rhetorical questions…what do you all DO?  Heck, how do you forgive yourself for not being able to spare your children the wounds that come with catastrophe?
No joke, the hermit thing is looking like a viable option, if someone is willing to take the dog out every so often while I’m in my yurt…

Thanks, all…

And next time I promise, I will reference a sparkly unicorn or something. ;)