A Year Ago

A while back I started another blog where I could vent and no one who knows me would see it.  There were things I wanted to write about – well, type, because typing is faster than writing – but I didn’t want feedback.  I just needed a diary of sorts.

About a year ago my mother was diagnosed with cancer.  There had been lots of other things going on with her over the years, things I didn’t write about out of respect for her and the rest of my family, and because, well…because.

Today is my mother’s birthday.  We cooked Thanksgiving dinner at my Dad’s house yesterday, which was the first time in years that that house has been filled with family and food and love and peace.

Anyway, in my other blog, this is what I wrote the morning after Thanksgiving.  I’ve edited it a tiny bit, but not much. 

 

New Territory  November 29, 2013

 

It's called Cholangiocarcinoma, which is cancer of the bile ducts that descend from the liver to the gall bladder.

It's pretty rare, and pretty uncurable.

Surgery is sometimes a possibility, with one in five people living five more years post surgery, but that's only if they're younger, much healthier in other ways, and not an eighty (now eighty-one) year old woman in not so great health who's abused her liver with way too much alcohol over the years.

Chemo and radiation are options, but only palliative.

Mom said to the doctor something like "and what if I just want to...go?"

The appointment was bizarre.  Frustrating.  Funny, in some ways.  Far too long.

The doctor we saw wore a tweed jacket over a medium blue oxford shirt and I forget his pants.  He wore a tie.  And he was about the least personable doctor I've encountered in some time.

Everything's on laptops now, and for whatever reason - I know he had one, it's called "rigidity" - he had to scroll back through her history with that office - all the way to 2007 when she was diagnosed with an ulcer or something - and when my sister and I tried to get him to skip to the present, he gave us this...LOOK and told us something about needing to see her history in order to discuss what's going on now.

Many eye-rolling looks were exchanged between my sister and me during that visit.

The four of us - Mom in her wheelchair, Dad, Mere and me - were squeezed into this little exam room, and the doctor was squeezed into his desk/chair combo, squinting at his laptop and scrolling through notes from the endoscopy a week and a half prior.

He took more time than necessary to read - aloud - every bit of notation entered, AND he would stop periodically to give us definitions, or to talk percentages, or whatever, and he WOULD NOT skip over stuff we already understood.

It was, frankly, a bit of hell.

And plus, we - my sister, my father and me - already knew the diagnosis.  Well, sort of.  We had the gist of it, thanks to a blabby doctor who assumed my dad already knew what had been discovered during all the tests and just spelled it out for him.  Right there at the weekly Rotary Club luncheon.

But anyway, so here we are with Dr. Lecture Hall, as he takes forEVER to get to the bottom line, and my mother was getting uncomfortable from sitting in the wheelchair for so long (we waited in the teeny tiny waiting room for quite a while too, ultra punctual fools that we are....) and she just wanted to lie down or go back to the nursing home where she's been transferred.  The doctor showed no sympathy, compassion, or inclination to move things along.  It was all at his pace.

I wanted to hurt him.

I'm pretty sure Mom knew, somewhere in that part of all of us that just knows things.  Finally, while he was describing something ad nauseum, mom interrupted him with "Do I have cancer?"

He wouldn't answer.  Bastard.

There's a scene in A League of Their Own right before an end-of-the-season game where a telegram delivery guy comes into the locker room and has to deliver notification that the husband of one of the women has been killed in action.  He can't find, on his little clipboard, the name of the recipient, and he says he has to go back to the office or wherever to find out who it's for.  Tom Hanks, the coach, wrestles the telegram away from the guy and hustles him out the door, because really?  Who needs to suffer all that not knowing?  Yeah, the scene was contrived, and I don't think notification of your husband's passing would be done that sloppily, but what do I know?  I just know that I felt, during that doctor visit, like wrestling the laptop out of that most annoying and anal doctor's grip, scrolling through the notes myself, and finding the punch line.  Faster.

Eventually, of course, we got there.  Slowly, frustratingly, painfully, annoyingly, but finally.

And it was anticlimactic.

I think Mom, Mere and I especially (Dad was busy looking at a diagram of cross sections of internal organs the doctor had passed around, so we could see where the liver and ducts and all those things were) were just so sick of being there, WAITING, that once we finally had confirmation, we just wanted to leave.  Stretch our legs (literally or figuratively), breath some other air, get away from this guy.

But he wouldn't see that.  He kept talking.

Most of the time doctors visits seem rushed, even when the doctor is classy and tries to not SEEM in a rush.

This guy...he had all the time in the world.

We also learned that the cancerous cells, which, in this sort of cancer grow in and out of the bile ducts, had grown to a larger size than the initial xrays or whatever had indicated - about 4cm instead of one - and had spread - or appeared to have spread, hard to tell with Dr. Verbose, to nearby lymph nodes and into the liver.

She has a plastic stent in the left descending bile duct, so that bile will flow and her jaundice is alleviated, and the dr recommended replacing this with a wire mesh one, which is less prone to infection and works better over a longer period of time.

But, he tossed in, it still might clog back up.  And putting a stent in the other duct isn't as (relatively) simple a process.

I said we'll deal with that when we need to. 

He still wouldn't stop.

So we've got an appointment now to have that stent replaced on December 23rd.

And an appointment with an oncologist on Dec 4th to discuss palliative chemo options.

Yesterday was Thanksgiving.

My sister and I met at the nursing home just before seven in the morning.  She brought coffees and muffins.  I brought five loaves of bread and the stuffing bowl.

The stuffing  bowl is a yellow stoneware bowl that Mom has used to make stuffing every Thanksgiving in my memory.  It's mine in the will.  That's one of our morbid family jokes.  We have several.  Long-standing jokes.  I get the stuffing bowl, and my sister gets the gold caps on mom's teeth.

In past years we'd meet at my parents' house to cube the bread and chop onions and celery, making stuffing while trading snide remarks and generally annoying each other.  That's how we show love.  And we'd stuff the turkey ("regular" stuffing in the body cavity and sausage stuffing in the neck), and once the bird went into the oven, my sister and I would go back to our respective homes, prepare whatever sides we'd volunteered for, and later in the day we'd meet up again for food.  Lots of food.

In more recent years, Thanksgiving has moved to my house.  There have been times - maybe one or two - when Mom came up here to help with the stuffing.  But fewer of those in recent years.  And I've used other bowls.

But this year, we needed to use the bowl.  I'm thinking it's the last Thanksgiving we'll be able to do this, all three of us.

I feel myself grabbing at things, wanting to...I don't know...make every day a bucketload of memories, poignant looks, tears, love...and it can't happen.  It will exhaust all of us.  So I need to pull myself back.  I go overboard sometimes.

Yesterday was also Mom's birthday.  Today I'm cooking lamb and bringing it to her.  Whoever else is available will join in as well.

But overnight I started wondering if that will be too much for her.  A whole mess of us - husband, daughters, a son-in-law or two, grandchildren - descending on her room, surrounding her bed, trying to summon a celebratory vibe.

My kids don't know the diagnosis.  Not yet.

And I may wait til after the oncologist appointment to tell them, just so I have a little more to work with.

I have moments when I just want to drop to the floor and cry.  Earlier this week, I think Tuesday night, I ran a bath, with the fan on in the bathroom, just to create a lot of noise so I could sob without anyone hearing me.

It comes and goes.  I'll be fine and then some little something will drift through my mind and get snagged on a corner of a memory and I'll be pressing my lips together and blinking hard.

A lot of anger has dissolved.  So much anger carried around for so many years.  Half my life - HALF OF MY LIFE - spent dealing with her alcoholism.  Okay, there were periods of time when she wasn't drinking, but they never lasted, no matter how long they stretched.  And Oh God I don't feel like writing about all that.  But the missed birthdays, missed holiday, or just tense holidays with glaring and hostility and my mother demanding a drink and me trying to keep it all off my kids' radar...

Fucking pain.

And now a lot of that has melted into deep, dark sorrow.  So much time...wasted.  Lost.  Gone.  Empty.

My kids aren't going to have a ton of memories of her.  And that makes me so sad.  I know I'm fortunate to have known all four grandparents - not everyone has that.  But my parents are alive, and are nearby, and the ONLY reason my kids don't have a deeper relationship with my parents is because of my mom's drinking.  And, to be fair, my dad's contribution to her drinking.  Not in driving her to it,  - well, scratch that - he did.  He'd drive her out to lunch so she could have her glasses of wine, or he'd drive to liquor stores and buy her booze.  He helped.  He helped.  But.

Oh it's such a tangled history.

But anyway.  My fingers are tired of typing, and I need a break from this story for now.  But I've been holding all this in for so long, purposely NOT writing about it, and I don't think that's been healthy either.

Comments

[Kristi Wood]

Peace is such a welcome blessing. Love you, sister.

[Liz]

I hope you can find peace with everything that is going on. It may take a lot more baths with the fan on, but you have survived everything in you life up to this point. You can survive this, I know you can. Internet hugs to you.

[Lisa Aguirre]

Jayne, thanks for sharing. I can totally relate to you. I'm so sorry. It must be hard, but keep your head up and keep the faith. Faith will help you this year too.

[Kat]

Oh sweetie, you're soooo very loved.
Sob all you want, because it really does help. Afterward, stand up tall, because you're the most incredible mother yourself. And all that incredibleness comes from you.
I have a dick of a mother. It's hard--I know!
So you and I have to stand up tall and do our best and be VERY proud of how far we've come and the grace we're just learning ourselves that we're passing to our kids.
I hope you all have a gentle journey. I'm so scared of facing that journey myself with my mom. But I do wish you gentleness.

[laura]

I just want to give you a big giant hug.
blessings
~*~

[RoseAnn]

My heart breaks for you but I appreciate your sharing. I think our relationships with our parents are destined to be...complicated. It's just a matter of severity and types of complicating factors.

{{{Hugs}}} to you. The holidays can be rough when dealing with this type of crisis but I love the image of you making the stuffing in your mom's bowl!