Orphanhood

And I’m back to work as if nothing happened.  Pushing paper from one side of my desk to the other.  Smiling at students.  Helping to contribute to an idyllic education in a bitterly cold, if brilliantly beautiful, academic wonderland.

My last parent died on February 7, 2015.  I’m so startlingly aware of what I no longer have with each breath I take.  I’m feel like an orphan at 31.  Why isn’t there a word for orphaned adults?  Well, one that doesn’t make me feel like I’m trivializing the experiences of “true” orphans.  The little orphan Annies and kids on the Unicef commercials.  Surely I should feel grateful for the time I got.  I should stop whining.  There’s no word because it’s not that bad, right?

There is a word, I guess.  Parentless.  But this definition annoys me as much as its infertility counterpart – childless.  I don’t want to define myself by what I don’t have now, just as much as I didn’t want to define myself by what I didn’t have then.  It leaves out so much.  What I did have, what I had to endure, what I’ll never know again.  Childlessness undervalued my other half, the man who made two a family.  It didn’t let the world in to the daily battle we were fighting.  It didn’t acknowledge the loss of naiveté we’d suffered along the way.  It made cut and dry something that was far from that in our situation.

Parentlessness feels much the same.  Though it does imply I once was with parents, and now I am not, it glosses over the agony by which that happened.  The midnight call asking permission to transfer my dad to the hospital, the 1am call saying, “It’s not good,” the 2am call to say he was nearly gone.  I listened to the hospital machinery chirp and chime as my father took his last breaths 400 miles away.  I held my son, I packed the car, we drove.  The last of the 3am unplanned drives home.  My home.  Our home.  Our house now.

But, now I’m back at work.  Living this other life.  Wake up, daycare, work, dinner, sleep, repeat.  Another house stands empty 400 miles away in a city that has my heart.  With both my parents gone, I feel like that city is the last parent I have left, and I ache to be there with all my heart.  To leave this job, this adopted home, this life I spent the last 15 years building for myself behind.  Now is not the time to make major life decisions, yet I don’t know how to live in both worlds at once.  So, I spent the evening of my dad’s funeral applying for a job 400 miles away.  And I spend tonight restless.

The people that gave me life are gone.  If that doesn’t make me want to start living, I don’t know what will…

Two cancers for the price of one

My head’s reeling.  I’ll keep it short.  My dad’s brain cancer isn’t just brain cancer.  Or, rather, my dad has an entirely separate additional cancer.  How does that happen?

Glioblastoma multiforme diagnosed in September; adenocarcinoma of the intestines diagnosed today.

Not sure where I’m going with this, other than marking it.  Waving the white flag.  Settling onto those words “palliative” and “hospice.”  Waiting for the end.

Finding me

How many times have I made promises to write more?  To return to the blogosphere?  To reinvigorate my Twitter presence?  Too many.  Far too many if you count the silent thoughts that went unrecorded.  So, this is definitely not me making more promises I won’t keep…

But, I had a realization yesterday.  As I sat with my therapist and reviewed dad’s health (re-hospitalized, poor, and fading), N’s sleeping (non-existent), my marriage (strained), my career (overwhelming), and my health (rocky and ignored), she said something that surprised me.  As much as I’ve come to respect and embrace my need for our sessions, I’ve still always subconsciously conceptualized therapy as a highly narcissistic thing.  What could be more self-centered than an hour exploring the self?  So it felt out of left field when she observed that I seem the happiest when I’m helping others.  Was this just a compliment to help walk me back from the edge that’s become my life?  Had I really fooled her into thinking of me as this give give giver?

But, then, I really mulled it over.  Who am I now?  Who am I beyond a grieving daughter and proud mother?  What makes me me?  What makes me happy?

It’s then that I realized that, where others have hobbies, I have the cause of infertility.  The drive to help the young and chronically ill.  To walk others through the minefield that is an undifferentiated autoimmune diagnosis.  And, I miss that part of me.

Infertility can never be “cured,” but it can recede into the shadows.  It absolutely has for me, especially since the tumult of September.  And, a large part of what makes me me went with it.

I miss my RESOLVE support group.  I miss who I was when I was sitting in the front of that often very crowded hospital conference room.  I miss discussion forums and surprise questions from Facebook acquaintances and teary phone calls from women’s whose menstrual cycles I knew as well as my own.  Being an infertility advocate was my club sport, my crafting, my recreational time.  It’s left an odd void.

Yet, my relationship with infertility is still forever changed thanks to my son.  I can’t go back and feel those feelings as deeply, as wholly, and as painfully as I once did.  They, too, are shadows of what they once were.  And that makes me feel like an intruder in my own identity.  A fraud.

I need to rediscover my role in this community.  Because, yes, my therapist is right.  No past time makes me smile brighter or cry harder than advocating for the rights and opportunities of young women facing infertility and autoimmune disease.

In a wonderful stroke of coincidence, this realization has dawned just as announcements of RESOLVE’s Advocacy Day 2015 hit the airwaves.  I can’t fully commit to attending just yet – my life is a whirl of unanswered questions thanks to cancer – but I pledge now to try and make it this year.  Won’t some of you join me?

Can you laugh your way into the looney bin?

The prospect of updating this space with news of the past 2 months makes me cringe.  How can you possibly fit all that joy and sadness, bliss and stress into an empty textbox?  When I started this blog it had one purpose.  To provide a space to scream loudly, cry publicly, type angrily about infertility.  Infertility.  That disease we so frequently suffer in silence.  That disease we still so frequently have to convince people is a disease.

Cancer’s not nearly so silent.  Yet, two months in to losing my second parent to cancer, I sit here silently.  It’s too much to type.  It’s too much to fathom.  It’s much too much to manage.

So, we’ll start with a story.  A single event.  And an event that’s even loosely tied to infertility when we’re all said and done.  Now lookey there!

I got my period on Tuesday.  The first since August 2013.  The first since IVF, since pregnancy, since the arrival of N, since my dad’s cancer diagnosis and craniotomy, since waving the white flag to breastfeeding with an insufficient supply and dying dad 7 hours from home.

When I pulled the toilet paper up to inspect it (will this nervous tick IF and multiple miscarriages ingrained in to me ever go away?), I saw the red.  When I saw that red I laughed.  I laughed a laugh so hard I shook.  I shook so hard I laughed some more.  At some point the laughter transitioned to screams of misery and tears of terror.  My face went numb, I laugh-cried, I fell to my knees.  This was it.  This was my breaking point.  This was surely the moment I wouldn’t recover from.

*******

30 seconds prior to that wipe, my husband was holding a fussy N and answering my father’s home telephone.  He was screaming to me, “It’s your aunt.  She wants an update on your dad.”

1 minute prior I was walking through the door of my father’s house with sushi takeout in hand.  I was greeting my husband and son, ready to settle in for a late dinner after a hectic day.  I said to my husband, “I really need to call my aunt and update her, but I haven’t peed since noon and I’m going to wet my pants if I don’t take 30 seconds to do this first!”

30 minutes prior I was driving in my car with my husband and son discussing how upside down the day had gone, how hungry we both were, and how much we needed to just get some takeout and relax for the rest of the night.  I was handing my husband my phone to call in my spicy tuna roll while I drove home from our errands.  I made plans to drop off the boys, let the hubby get a headstart on N’s bottle, bath, and bed routine, and go retrieve our food.

1 hour prior I was sitting in the Target parking lot with a fussy N in the back seat waiting for the hubs to return from getting the special AR formula my refluxey, fully formula fed baby now needed.

1 hours and 30 minutes prior I was standing in the aisles of Sam’s Club cursing them for not having N’s formula.  I silently mourned again the loss of the breastfeeding relationship I thought I’d have with my much longed-for child, but I quickly moved back to our mission.  More diapers and formula.  We’d be staying in town for longer than planned. We’d need more diapers.  More formula.  Feed the baby.  Change the baby.  Love the baby.  Don’t be so stressed when plans keep on changing.  We’d still have our Thanksgiving feast.  Dad’s would just be reheated in the microwave and served on a hospital tray.  We’d sneak N in in his adorable bow tie to cuddle with grandpa.

3 hours prior I was standing in the hallway of my hometown hospital listening to my dad’s quirky (aka obnoxious) oncologist utter the words, “He’s a tough old bird.”  No, he didn’t really know how this affected prognosis.  No, he didn’t know what the next few days would look like.  No, he didn’t know much.  “You see,” he’d said, “I don’t really know what to tell you.  I’ve only ever seen blood clots this bad mentioned on autopsy reports.  I don’t really know how he’s still with us.”  He literally has a clot floating in his heart.  Bouncing around with every heartbeat.  How is that even possible?  Ok, change of plans.  Not home for Thanksgiving.  Not home for a while.

4 hours prior I was sitting by my dad’s hospital bed explaining that we weren’t dooming him to live the rest of his life in a hospital.  I was explaining as simply as I could that there were two different things the doctors were talking about.  “Two separate things,” I’d said.  “There’s cancer and there’s blood clots.  You’ve got both.  One caused the other, but they’re separate.  You’re here because of the blood clots, and only here until we get over the hurdle with these blood clots.  You’re not here because of the cancer.”  When dad asked, “Then what the hell’s wrong with this doctor?  Why’s he so negative.  He had me thinking I was going to die!” I had to respond – again – “Dad, you ARE going to die.  The cancer will kill you someday.  Probably someday in the next 12 months to 2 years.  You’re here because the blood clots almost killed you.  And, they almost killed you yesterday.”

5 hours prior I was screaming at my husband that the fucking nurses station had me on hold for over ten minutes.  My dad could be dying right this minute and they’d put me on hold.  Then they hung up on me.  I was livid.  I called back, said I’d be there in 10 minutes, and I expected the doctor to be there waiting to talk to me.

5 hours and 10 minutes prior I was just taking my jacket off when my dad called from his hospital bed.  “I’m really confused and upset,” he said.  “This doctor came in.  I don’t know who he was.  Things are very negative right now.  He’s very negative.  Something very bad is happening.  Something with my test this morning.  I think he thinks I’m dying.  I don’t know what’s going on.”  I cursed again a cancer that manifests as transient confusion akin to Alzheimer’s.  I cursed again a doctor speaking to my dad without me being present.

5 hours and 20 minutes prior I was just settling in after returning home from visiting my dad and doing a giant grocery shopping trip.  The emergency room doctor the day before had said he could maybe be home by Thanksgiving.  I went straight from the hospital to the store, buying all things turkey and pumpkin.  We’d have a real feast.  My dad’s last, and N’s first.  If we were going to miss our usual big family holiday with the in-laws, we were at least going to gorge on turkey and make sure my dad enjoyed our visit.  All we needed to hear was that the echo they’d done that morning was clear.  He was obviously strong to survive so many clots.  To walk into the ER with a pulmonary embolism and only be complaining of a little shortness of breath.  A clear echo, a prescription for blood thinners, and we’d have our Happy Thanksgiving.

6 hours prior I was pulling out of the hospital parking garage feeling relieved.  Dad was in good spirits and less confused today.  He’d even been pleasant with the ultrasound tech.  Maybe I’m too used to reading the expressions on tech’s faces for my own good after more scans – internal and external – than I can count.  But, didn’t that echo take an awful long time?  Didn’t that tech get really silent?

*********

When I wiped red all I could think about was the day.  Not the emotions of it – the ups and downs, the bad news the good, the baby giggles and the terror in my dad’s weak voice.  I zeroed in on the places.  The grocery store.  Sam’s Club.  Target.  The Rite Aid next to the takeout restaurant.  They all had pads and tampons.  I didn’t.  Not a one.  I waded up some toilet paper, shoved it down my underwear, kissed baby and hubby goodbye, and drove to the Rite Aid.  My eyes were red and raw, I stumbled around like the drunk my dad was before cancer.  My laughter on the toilet echoed through my head.

As the clerk rang up my goods – value pack of tampons, pads, 500-count Advil, and, of course, a Hershey’s bar – I thought to myself, “Well, the day could have been worse, I suppose.  I could have run into someone from high school here in the pharmacy.  Doesn’t that always happen when you’re home for the holidays?  Dodged a bullet there.”

When life laughs last…

I was looking forward to living life beyond my maladies.  To comprehend life outside of surgeries, losses, and waiting rooms.  To embrace an IF-less life.

On Monday I became the daughter of a dying parent.  I fill this role for a second time.  My world is spinning and staying still at the same time.  Can you be called an orphan at 31?

Glioblastoma multiforme.  Stage IV brain cancer.

My dad was picking the wrong words the weekend of September 6.  The eggs became gravy; the gasoline a motor.  I diagnosed alcoholism-induced dementia, but made his sister promise a prompt visit with the GP.  The GP that apparently retired a decade ago.  My dad’s never had use for a doctor.  Fit as a fiddle aside from that drinking thing.  73 and healthy.  Hair just getting a silver sheen in these past few years, still mowing the lawn, fixing everyone else’s discarded lawn equipment, growing tomatoes from seed, drumming and marching as he did in the Air Force.  Ten days later when a new practice had time for him he saw a doctor.  At this point my phone conversations from 6.5 hours away were one sided.  “Dad, how are you feeling?”  Him: “Well, you know… you know… the tugboat.”

His sister called that night to say the doctor was very concerned and she’d taken his car keys.  That’s when I got scared.  My dad would never let his van keys be taken away.  Ever.

Two days later and time for the precautionary CT scan.  2.5 inch mass pressing out all the free space on the right half of his brain.  The scan and later MRIs look like a bad science fiction movie.  I’m certain you don’t need years of education in radiology to interpret that…

The night of the CT scan, my dad’s first night in the big city hospital, I tossed and turned in bed until little N woke for his 4am feeding.  We were in the car and on the road home – just two hearty travelers – by 5am.  I spent 8 hours with my dad, 10 hours away from my son, that day.  Two sentences made sense.

After months of crying over my inability to exclusively breastfeed, I cursed my body on the day of dad’s surgery.  I sat and wept in the hospital lactation room as I pumped for relief as my dad lay on the table.  17 hours away from N that day.  17 hours feeling like there was no way to succeed at motherhood and daughterhood at the same time.  17 hours waiting to hear that they got *most* of the mass, but not all.  That the mass was “suckable” but bad.  That it definitely looked like cancer.

Monday the pathology confirmed it.  With chemotherapy and radiation prognosis is 14 to 15 months.  He could have up to 2 years.  At least, I thought, one of those measurements comes in years.  My mom survived 14 months.  Will dad do better or worse?  Will I find myself hoping it passes quickly, or that we can milk each moment.

N won’t know his grandfather, just like he won’t know his grandma C.  How can N know me without knowing them?

I remember sitting in the backseat of my mom’s car, riding along with a little friend to dance lessons, or mini golf, or something.  She was talking about how her grandma did something, or cooked something, or smelled like something.  It’s vague.  I told her with the pride of a child, “I don’t have any grandparents!”  I remember my mom sniffling from the drivers’ seat.  Will I do the same when N innocently says, “Well, I only have Grammy and Pop Pop D.”

Most of the time I feel like an event planner or a fledgling bride.  Instead of calling caterers and venues, I’m dialing social workers and radiation oncologists.  Dad wants to be home, freed from rehab, able to tinker with cars and lawnmowers, able to cook.  I want that for him, but know he’s not who he was a month ago.  I need to hire a home aid.  I need to find transportation to radiation.  I need to get him cleared to leave rehab.  I need to do so much.  And in doing so much I never feel.  Feelings are for later.  If I remember how.  I’m not sure I do.