38 Days

[I haven't blogged in a really long while, but people keep asking, and I know it's got a lot of you kind of freaked out.  So here's how it all went down.  And forgive me if some of it comes off a little bitter, cold, damaged, angry, traumatized...it's just 'cause I am.  It too shall pass, I'm sure.  For now, be patient with my peculiar way of working things out.]

So…my mom died.

I was at work, alone, about a half hour before the end of my shift.  My dad called.  (My dad never calls.  He always makes Mom do it.)  He was being cryptic.  “Can you come straight over to the house when you get done work?”  Someone was dead, obviously.  “Why?  Tell me why.”  “Just come over *badly-stifled sob*”  “Tell.  Me.  Now.”  “*pause*  I had to take Mom to the hospital last night.”  “I’ll be there in a couple of minutes.”

Jesus.

I immediately dialed my friend and screamed, “I think my mother is dead!”  Then my co-worker arrived to relieve me.  “I think my mother is dead!” I screamed as I grabbed my bag and flew out the door.

Dad was in the yard, walking the dog, when I got there, 2.6 seconds later.  “What’s going on??”  I demanded.  He wouldn’t make eye contact.  “I’ll tell you inside.”  He started toward the door.  “NO!  Tell me RIGHT NOW!”  I grabbed his arm.  “She’s dead, isn’t she?”  The dam burst – my dad, who is made of pudding and pocket fluff, began bawling.  “No,” he sobbed.  “Ovarian cancer…*snifflesob*”

I smacked him.  “GAWD!  Fuck, shit, Christ, fuuuuuuuuck, Dad!”  Smacked him again.  “I thought she was DEAD!”  Phew, it was just cancer.  Whatever.  I donate money regularly for that shit.  No sweat.  Hack it off, rip it out, buy a headscarf, we’re all good.  Crappy few months or, worst case scenario, years, we’ll be fine.  Hell, I have a background in nutrition – we’ll green smoothie that crap right out of her.  No problem.  My dad, the drama queen.

So I headed over to the hospital.  After stopping to make a buttload of lists in my iPhone with labels like “The Big C Battle Plan”, and stopping to buy approximately 8 million dollars worth of essentials like cashmere bedsheets to replace the hospital ones.  Because the key is just taking control of things, starting with your environment.  Comfort is important.

I’m not gonna lie – it wasn’t good.  My mom was unnaturally quiet – partially due to the NG tube down her throat.  (That’s hospital lingo for “nasogastric tube” – it sucks the poo out of your blocked bowel so that you don’t puke it up – you start to speak like this once you’re part of the ‘scene’.)  She had a considerable number of tubes in other places, as well.  But this was just ground zero – now let the healing begin!

Back story:  a full 12 hours or so before this (they didn’t call because they knew I had to work that night and didn’t want to wake me.  *—-*), my mom began spontaneously projectile-vomiting.  And it was green.

She couldn’t stop.  She was even puking the green stuff while they were stuffing several feet of the tube down her nose.  This turned out to be one of the most traumatic parts of the whole cancer experience for my mom.  After it came out about a week later, once the drugs had removed some of the abdominal swelling that caused the bowel blockage in the first place, every time there was any mention of the possibility of having it inserted again, she would get a stricken look on her face and the bargaining would begin.  Suddenly, she would be feeling so much better.  Suddenly, omg, she’d successfully had a bowel movement, a series of massive passings of gas, just that very morning!  A miracle!

It was heartbreaking.  This was a woman who couldn’t even stand to have the curtains open on the side of the house that faced the street.  This was not a woman that should have had her most private business on display for strangers – no matter that the strangers were people who had chosen for themselves a life of helping others.  They were still strangers, no matter how kind or sympathetic or knowledgeable they might happen to be.

But after a couple of weeks, she was able to get out of bed a bit, with the help of a walker (did I mention that this was a woman who, just 14 days prior to this was perfectly normal, walking the dog, climbing the stairs innumerable times during the day as she cleaned and puttered around a six-bedroom house?)  She was sipping tiny, miniscule amounts of green smoothies and organic squash soup brought in by me (because have you ever tried being a lactose-intolerant vegetarian with a bowel obstruction in a hospital?  They couldn’t even guarantee they could provide a dairy-free scrambled fucking egg for her.  And get ready for a lot of f-words in this post, because I’m still a little angry about many aspects of how this whole thing went down.)

But overall, things were looking good.  She was admitted on September 30th, she was diagnosed positively with cancer, stage 3 (supposedly), and now it was halfway through October and since she could move around with assistance and eat a bit on her own (and because she was practically offering me, her first-born, to get her ass out of the hospital), she was allowed to go home to await her first chemo session.

Wait, you say?  Chemo first, before surgery?  Oh, yeah – didn’t I mention?  The fucking tumour was 18-fucking-centimetres in diameter.  For you Yanks, that’s like a Canadian foot.  It was like a freakin’ basketball in my mother’s stomach.  AND SHE DIDN’T KNOW IT WAS THERE.  Scared yet?

The tumour was so huge, they were afraid to operate until it was at least half the size.  So the plan was, chemo to shrink it first; then surgery; then more chemo.  Yay!  What a fun year we were in for!

But then…two days after she went home – she hit the wall.  She just melted down.  She couldn’t move.  An ambulance was called.  She wanted to go back to the hospital.  She wanted to speak to someone about a DNR order (for all you firefighters, in hospital-speak, this doesn’t mean “Department of Natural Resources” – it means “Do Not Resuscitate”); she wanted to speak to someone in palliative care.  I lost it.  I arrived at the hospital ER ready to fight – and my mom was in a wheelchair, completely broken.  She was done.  My dad – who has spent a lifetime catering to her every desire – quietly muttered, “It’s what she wants.”  I lost it.  I cried.  Then I pouted.  Then I spoke to the palliative care doctor (who weirdly looked exactly like Santa Claus with mismatched socks) with a calm I didn’t know I had.  Then I cried a little more.  I told her I wasn’t ready to lose my mom yet.  She told me to stop pushing my hippy shit on her.  Then I stormed out.

This time around in the hospital seemed a little better at first.  Being on the “waiting to die” list gets you  a private room a lot faster.  It was much better than sharing with the overly-social, turban-ed, incontinent and slightly senile roommate she had at first, or the thousand-year-old hospital room party-thrower who liked to talk about Mom behind a very thin curtain that she had when roommate number one moved on (in which direction, I don’t know).

But things went rapidly downhill.  As it turned out, her hitting the wall was due to the blood clots she had in both lungs (which, looking on the bright side, really should have killed her instantly, so there’s that).  Turns out, certain types of cancer tumours actually produce pro-coagulants.  Nice, huh?  So anti-coagulants were now a part of her diet.  Which, like everything else, was tube-related.

I’m going to speed through the rest of this story, because what follows are three weeks (that honestly, seriously, truly felt like 600 years – and I’m not even slightly exaggerating about that…I have never, ever, EVER understood the “time is relative” theory, despite a mild Einstein obsession, until now) of a level of hell that I simply cannot, even now, process.  I actually am strangely calm writing this – so calm that my background in neuroscience tells me I am likely suffering a mild form of post-traumatic stress disorder.  Mostly because, while I don’t cry while talking or writing about my mom, I seem to have no problem bursting into tears while pumping gas or driving home from work or feeding the cats, etc.

Mom was only conscious for about another week and a half.  And it wasn’t really possibly to have any sort of meaningful conversation, like you see on TV, because of the drugs and the oxygen deprivation due to the breakdown of her body in general.  She rapidly lost the ability to even roll over, so each day was structured around her bath time, when the sole LPN (not the RN, because they are in high demand) came in to valiantly attempt to move my mom’s dead weight (shut up) while she bathed her and changed her sheets on her own.  Which, obviously, was impossible, so I was there to help every day – usually after having been awake for approximately 19 hours (having worked all night at my job, because, while I qualified for the oh-so-helpful-thank-you-Stephen-Harper compassion care leave, it only pays 55 percent of your income…which nobody can actually live on).  My mom, who was too weak to even speak at this point, would tighten her mouth and squeeze her eyes tight (she was at the beach in her mind, running with her previously-deceased spaniel, she managed to tell me during one rare lucid moment) while we rolled her over, stripped her, cleaned her, changed her bedding and then finally tucked her in again.  I would send the nurse away then, because I was the only one who knew how she liked her pillows arranged.

Ah, the pillows.  In less than a month, my mom had lost all of her subcutaneous fat.  She had nothing to cushion her bones or the massive fucking tumour from cutting into her skin.  Her hands were like mummy hands – she had had these pretty, pretty, dainty hands…but now they were shriveled and yellow and waxy, and they were like an anatomy lesson – you could see every single feature under the skin.  So pillows were important.  There was a six-pillow minimum in place.

And to add another layer of personal hell, while her upper body was wasting away (she was now unable to eat again – we discovered this after a particularly sad afternoon where she whispered, “I’m going to be sick” just in time for me to, with superhero speed, whip a basin under her head), her lower body was swelling like a balloon, because the Fucking Tumour (I feel it now deserves capitalization) was cutting off the flow of lymph, behaving like a cork.  Her legs were so inflated that the skin began splitting and the fluid started pouring out.  They had to place incontinence pads on the bed beneath her to soak up the liquid pouring out of her brutalized legs.

By now, she was also starting to hallucinate.  It wasn’t the drugs – her brain was shutting down and she wasn’t getting enough oxygen, despite being nose-fed it through yet another tube.  She was dehydrated (couldn’t drink any more than she could eat) and most of her delusions involved the conspiracy of the hospital to keep people from having water (they had to discontinue the IV fluids because it was all going to her poor legs and staying there).  She spoke of a lengthy conversation she remembered us having about a newspaper article about the poor people they found crawling on the riverbank, trying to reach the LaHave to quench their thirst after escaping from that very hospital.  She distinctly remembered me telling her about the 911 call I took about it (I work as an emergency dispatcher).  Heartbroken, I would nod knowingly and wipe her mouth out again with another glycerin swab and put some more balm on her dry lips.

Then there was Hallowe’en.  Oh, Hallowe’en.  The day that well-meaning hospital employees dress up, thinking it will cheer up the patients.  Don’t get me wrong – there are a lot of things that change in your head once you are on the other side of this stuff.  But I’m telling you – there were no less than four – yes, FOUR – staff members dressed up as devils that day.  DEVILS.  On a ward full of senile, sick, heavily-medicated, DYING patients.  I mean…no.  Just…no.   One of them was a very dear friend from high school, and I had to tell her, “Um…you’re not going into my mom’s room today.”  Just no.  My dad and I had to stay with my mom in shifts for that 48 hour period (it would have been 24 hours, but she was confused about the date and thought Hallowe’en was a day earlier than it actually was until someone *me* let it slip about the actual date) because she was afraid the ghosts were going to steal her purse.

I was still, however, thinking, “Okay, we just have to get through this current crisis and then we’ll get back to the chemo plan”.  But then I had a looooong heart-to-heart with her doctor, who very kindly and warmly broke it to me that my mom was “not a candidate for chemo” anymore.  She was too weak.  And they didn’t foresee that changing.  I finally asked the question I’d been avoiding, because I know there is no way to really, truly know.  “How long?  I know I can’t hold you to it, but, in your experience, how long would you say?”  “Weeks, at best,” the dear doctor replied.  “We’re probably not talking days, but we’re not talking months, either.”  This was October 31st.

I had to call in sick for work that night.  I drank a lot of wine and it came straight back out in tears.

A few days later, I arrived as usual, right after work, and I went over to tell Mom I was there, and to brush her hair back like she liked, and for some reason – I don’t know why – I lifted the blankets a bit and looked at her abdomen.  Blood.  Everywhere.  So much blood….

Mom was semi-lucid that day, a rare thing.  But she had no idea that she’d bled through four layers of fabric, and I didn’t see the point in her knowing.  I had no idea where the blood was coming from, but her entire body was black and blue at this point, so I knew it couldn’t be good.  Feigning serenity, I chatted to her as I pressed the panic button on her bed.  When the nurse came, I lifted the corner of the covers and casually said, “We’ve just got a bit of blood here.”  The nurse’s face went full-on panic, and Mom said, “I’m bleeding?”  I brushed her hand away and flipped the blanket off the bed, along with her johnny shirt, and as the nurse began to investigate, I expertly slipped a new clean johnny shirt on her while balling up the bloody one so she couldn’t see.  But she was on fire that day – she used what little strength she still had and reached out and pulled the dirty one back toward her.  When she saw the blood, her face fell.  Whatever tiny shred of hope she had left evaporated utterly in that split second.  Her face hardened and she nodded, lips pressed together.  Then she closed her eyes, let us do our indignities to her body to get her cleaned up, and I could tell she was already at the beach.

The bleeding was from the injection site of a needle she’d been given three hours earlier.  A teensy, tiny little pin-prick that just didn’t stop bleeding.  The blood-thinners.  As it turned out, her catheter bag was also brimming with blood.  No pee – she wasn’t getting fluid of any kind, hadn’t been for over a week.  Just blood.

That was when the doctor said it was now a choice –  bleed to death right away or discontinue the anti-coagulants and wait for the blood clots to return.  The blood-thinners were stopped.

On November 6th, 38 days after she went to the hospital thinking she might be having a gallbladder attack, I spent the day at the hospital.  We did the bath, the bum-wiping, the tiny tear that always crept out of my mother’s eye during this even when she wasn’t able to open them.  I arranged the pillows, brushed her hair, rubbed lotion on her parchment skin, just like I had every day for the last 600 years.  Today was different, though.  She couldn’t speak – her vocal cords had long since seized – but she was trying.  She was trying to speak so hard, I wanted to stab myself through the heart for not being able to understand her.  Her lifetime of wisdom, lost forever.  Finally, she fell into a fitful sleep, moaning and whimpering for hours.  I scrunched up on the cot tucked in the corner, under the never-opened window blinds (because the light bothered her eyes), in that tiny dark dungeon of a hospital room where I had been watching my mother suffer for as long as I could remember, while I googled “ovarian cancer” and “signs of impending death”.

But it couldn’t be today.  I mean, it was cancer.  It takes forever to die of cancer.  I’d been awake all night.  I was supposed to work that night.  I toyed with the idea of calling in, but my shift started in like seven hours – it would be so thoughtless to make a co-worker have to fill in on a night shift with so little notice, just because I was feeling uncomfortable leaving the hospital to go sleep.  I mean, I had to bank those favours, because this thing could drag on for years, right?

I kissed her good-bye, and I wasn’t sure she would hear or understand, but I told her I loved her.  And in another one of those weird, rare lucid moments, she mouthed back, “Love you”, without opening her eyes.

I stood in the doorway for a really, really long time, watching her, before I left.  I cried all the way home.

I’ve only really touched on the horror that I saw that woman’s poor body go through.  I feel you should know, but I can’t quite bring myself to describe it in its gory detail right now.  But know this – it was so bad that, that night, when I went home, I – a devout atheist – prayed.  I didn’t really care who or what was listening – but I was willing to try anything at this point.  I prayed, not that she would live, I knew that we were far too gone for that to be a possibility – but that she would die.  I just wanted her suffering to end.  I wouldn’t have let a cat suffer like that.

The doctor, the week before, while trying to prepare me, gave me that look that told me she needed to know where I was at.  I knew she needed reassurance that I was going to be okay.  I told her, “In the beginning of this, she had the occasional good day.  And then it was the occasional good moment, even if it was just looking forward to her daily Popsicle.  She hasn’t had even a good second for a while now.  My mom is already gone.”  And the doctor smiled sadly and I could tell she and I were on the same page.

Two hours after I prayed myself to sleep, my dad called.  Sobbing, he just said, “Mom’s gone.”

And that was it.  Thirty-eight days.

So now you know.

And no, ovarian cancer does not show up on a PAP test.  It’s a fucking evil, dirty motherfucker (basically, in my case, literally).  All I can tell you is: if you are having weird digestive issues, find out why; if you are tired a lot, find out why; if you have relatives that had female cancers (breast cancer counts, too – they are closely linked), tell your doctor.  It’s all you can do.  And then just go fucking have some fun – there’s no point in worrying about it.  Live your life.

Image

Me and Debbie. I’m the short one.
Deborah Anne Hepburn-MacMillan
November 22, 1950 – November 6, 2013

The URI to TrackBack this entry is: http://andreamacmillan.wordpress.com/2013/12/03/38-days/trackback/

RSS feed for comments on this post.

5 CommentsLeave a comment

  1. Oh Andrea, I really don’t know what to say and wish this was just a story you wrote and not the truth. I so wish I could hug you write now. No one should have to go through this. Hugs to you my friend, love Dawn

  2. Andrea \Thank you for sharing this. Devastating to hear what your mother and you and your family went through over those 38 days. Your mother sounds like a lovely woman. Devastating thing for her and you to go through. Gone way to soon. Thinking of you. Hugs.
    Colleen Austin

  3. Andrea, My deepest sympathies for the loss of your Mom and the HELL that you all endured. Cancer is a monster for sure. The cruel, evil things is does to a person’s mental, physical, emotional being go beyond description. The obvious thing is it robs health and life; but does it really need to touch personal dignity? Personally, I believe that the loss of being able to continue to look after ones personal stuff (using the bathroom, washing up, combing hair) truly contribuites to the loss of hope during this disease.
    Hope that you all find peace. Try to turn your tears of grief, loss and change, into tears of joy that you had her. Thinking of you, Sue (Demone) Hubley

  4. Thank you, beautiful people, for your beautiful words.

  5. Wow. This was not the post I was expecting to read when I made my triumphant comeback to your blog. First, My sincere condolences — I have no frame of reference to relate to what losing a parent that way is like and can’t even imagine. Well, maybe I can a tiny bit because of the level of detail and emotion you put into your writing. I have read this a few times and each time I am especially struck by the part where you think to yourself “oh, it’s just cancer — we’ll beat this pesky sucker no problem,” before learning that so much of what they show in the media about serious illness is pure 1%-of-the-time-happy-ending bullshit.

    This seems way to late to be commenting on this post, but I wanted to pass along my sympathies — especially since I haven’t commented in so long.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 92 other followers

%d bloggers like this: