Reception A

Yesterday was not my first mammogram, but it was the first one since Vicki's diagnosis of terminal metastatic breast cancer nearly a year ago, so I celebrated the occasion by having a full-blown, hyperventilating-and-snot-nosed-crying panic attack in the waiting room.

My heart started pounding uncontrollably the minute I made the snap decision to get the mammogram done.  I was already in the Kaiser building picking up a prescription and getting my new glasses adjusted anyway, so I might as well get tested for cancer, too.  Right?

No big deal.

I fidgeted anxiously in line at the pharmacy, picking at my nails and fussing with my necklace.  "I can do this," I thought to myself.

I bounced my foot impatiently while I was seated in the waiting area of the optical center.  "It'll be fine," I muttered under my breath, looking around nervously and trying to take a normal breath.

And then I was standing at Reception A, filling out the pre-mammogram questionnaire.

Other members of your immediate family with a history of breast cancer?  I checked off the boxes.

Mother.

Sister.

Age of sister at diagnosis?  48

Your current age:  48

"Wow, girl, you're really fucked, aren't you?"

I blinked hard, and looked up at the receptionist.  "I'm sorry, what did you say?  I wasn't listening."

She chuckled softly, her kind brown eyes crinkling at the edges, and repeated her question.

"What's your date of birth?" 

Suddenly, it was a different Monday - the last one of the dozens of Monday mornings I had stood in this exact spot, in front of this same lovely woman, helping Vicki fill out the pre-chemotherapy blood draw paperwork.

"What's the date?" she asked me.  I told her, and she wrote down the letter F.

"Let me," I said gently, and took the pen from her to correct the mistake.  She fumbled through her wallet to handle the co-pay, but couldn't find what she was looking for.

"Pahla, which one...?"  She had a grocery store rewards card in her hand and a sad, confused look on her face.

"Not that one, sweetie, " I smiled at her.  "I'll find it."

She handed me her wallet and bent forward to lean against the counter.  Standing upright was painful and exhausting.

The receptionist smiled at me but didn't say anything, infinitely patient with this difficult transaction.

I wanted to show her pictures of Vicki, my Vicki, from just a few short months ago.  I desperately wished she could meet the healthy, vital, confident and in control Vicki.  Vicki who had pretty hair and a beautiful smile.  Vicki who didn't need help finding the only credit card in her wallet.  Vicki who stood up straight and walked quickly, who made decisions and laughed easily.

The real Vicki.

Instead, I finished up the questions and helped Vicki return to her seat.  I said nothing.

I thought about that receptionist a few days after Vicki died, while I was lying in bed trying to fall asleep but crying instead.

I wondered if she had noticed - after months of regular Monday morning visits - Vicki's absence. I wanted to thank her for the kindness she had shown Vicki at every visit, treating my sister with dignity and patience, making easy small talk and never letting on if it was frustrating to have such a simple exchange take so much longer than necessary.

Like this one.

The blood from my pounding heart was rushing in my ears, making it difficult to understand anything she was saying to me.  It seemed to take several long minutes to finish the questionnaire, more time than that to make the payment.  The machine had probably been beeping for some time before she gently directed me to remove my credit card.

I wanted to say something, but even as the scenario flitted through my head - "Thank you so much for being so sweet to my sister,"  "Yes, of course, how is she doing?"  "She passed away in December." - I could feel my breath catching in my chest and a lump forming in my throat.

"Have a seat and they'll call you shortly."

I looked in her eyes and knew this was all I was going to be able to choke out:  "Thank you."

I turned away quickly and started digging in my bag for my phone.  With my head down, maybe nobody would notice.  I sat down abruptly and put my hand over my mouth to try to regulate the tiny, shallow breaths.  Tears pooled in my eyes.  Thank goodness I was only pretending to look at my phone, because I couldn't actually see it.

I looked in my purse for a tissue - why don't I ever have tissues? - and wiped my face surreptitiously.

Some time later, when my breathing calmed a little, I looked up and around the full waiting room.  My eyes were immediately drawn to the window, where there was a springtime display of butterflies.

Of course.

Vicki - warm, vibrant and alive - sat next to me and put her hand on my arm.  "You've done harder things than this, Pahla."

I have.  I really, really have.

November 19th

When the Palliative Care doctor walked into Vicki's ER room with her kind eyes and rather more consonants than one usually sees in a last name, my heart sank. 

This was it. 

She pulled up a chair and settled in on the other side of Vicki in a position where she could address us all - Wally, Vicki and I - without looming over us like the other doctors and nurses had.  Her body language, her demeanor, and her expression all said that this was a conversation, not simply information passed down to us, or another examination.  We were all involved here.

Shit. 

After months of euphemisms and vague, partial answers from the oncologists, this gentle doctor was here to talk with us about the end of Vicki's life.  And not just in the abstract, but here.  NOW.

Vicki had been vomiting blood.  Her skin was pale and pasty, her blood pressure as low as it could possibly be while she was still alive.  She was talking and seemed cognizant about where she was and what was going on, but when the doctor started asking questions it was obvious that she was confused.

"So," Doctor Z-B started gently, addressing Vicki directly and nodding her head to encourage a response, "what do you understand about your cancer diagnosis and the treatment you've been having?"

Vicki answered slowly but with seeming clarity that she was doing chemotherapy and that her goal was a cure of her cancer.

There was a bloom of silence in the room as Wally and I absorbed Vicki's lack of comprehension and the doctor reassessed how much information she needed to give us.  Wally and I both shook our heads lightly, trying to convey to the doctor that we understood what was going on, even if Vicki didn't.

Cancer was coming for Vicki like a freight train - incurably, inevitably.  We'd been watching the headlight in the distance for months, but now the train was getting closer, the sound of it roaring in our ears.

The doctor started her compassionate explanation of Vicki's current state of health and I marveled at her skill with words.  She was clear but not shocking, kind without platitudes, and carefully, empathetically honest about the fact that Vicki was - right this very second - teetering on the precipice of dying.

While she was talking, I looked at the doctor's lapel and rolled her nearly unpronounceable name around in my mind.  I wondered about her very thick glasses - when I was young, they were called "Coke bottle bottoms" - and imagined her as a small child, getting her first pair and being excited to finally be able to read clearly.  I pictured her capable-looking hands playing the piano for many years, and wondered if music was a source of comfort for her or just another acquired skill.  I wondered if she had been teased for being sensitive, for being small, for being much smarter than the other kids, for having enough ambition to become a doctor.  I wondered if her hyphenated last name came from her parents, or from her own marriage.  I wondered how old she was, how long she'd been doing this job, how many families she'd delivered undeliverable news to.  She seemed to know exactly what to say, what questions to ask, and how to clearly, precisely define the edges between routine care and heroic life-saving.

Vicki had a Do Not Resuscitate order on file and was currently in the perilous state of possibly needing resuscitation.  Soon.

It was Dr. Z-B's job to help us clarify - for ourselves and for the hospital - exactly what situations that DNR order applied to.  She gave us several possible scenarios and asked Vicki directly, "What would you want?"

Vicki looked at me, unable to formulate an answer, and so the doctor asked me, "What do you think your sister would want?"

I opened my mouth to answer, but started crying instead.

My sister would want to hold her grandbabies.

My sister would want none of this pain, these treatments and the ridiculous regimen of dozens of medications.

My sister would want to laugh with friends, to take selfies with her husband on the beach, to catch up on Facebook while sitting on the toilet, to hop on a plane and go someplace warm, to eat at a nice restaurant, to watch her kids finish growing up and to take naps on Saturday afternoons.

But barring that, finding herself in this awful cancerous predicament, my sister would want me to get the pillow and put her out of her misery.

Vicki and I had had a "pillow pact" for many years.  After watching helplessly as our elderly grandmother lingered for weeks in the hospital without eating, talking or knowing what was going on around her, we both declared that we would much rather die quickly, and vowed to smother the other one lovingly and without regret should the occasion arise.

And now the occasion was here.

Vicki was standing on the train tracks with the engine barreling straight for her, and what was I doing?  Standing mutely off to the side, watching it happen.  Unable to speak, unable to help, inept and useless.

I turned my head, not wanting Wally or the doctor or - most importantly - Vicki to see my tears.

I stared at the machine recording Vicki's erratic, elevated heart rate, her O-sats and blood pressure.  I thought about her heart, beating on like a soldier, even as the rest of her body was failing.  I thought about what she would do if our situations were reversed.

Vicki would be so much better at this.  She would know what to say, what to do.

"It's just… sad," I finally answered, which wasn't an answer at all.  It was lame, obvious, unhelpful.

I wiped my eyes and held Vicki's hand, bracing for the impact of the coming train.

There was nothing else I could do.

Diagnosis

March, 2017; Thursday at 5 am; out for our regular weekly walk

"I think I pulled something, like my ab muscles.  I blame you."

"Of course you do."

Vicki was being serious but sarcastic, and I was deadpan and flip.  This was an old sisterly schtick, a familiar and loving way of speaking to each other.

"What hurts?  What did you do?" I asked more earnestly, putting on my fitness trainer hat.

"One of the seated workouts that we always do.  It's right here," she said, pointing to her ribs and waving her hand back and forth over a large area.  "I told Kathi I couldn't work out yesterday.  It hurts."

"Okay.  Taking time off of workouts is all you can do if you've pulled something.  We'll just walk slower today.  You'll be fine."

April 13, 2017; Thursday at 4:30 am; on a long walk, training for the Bay to Breakers

"The doctor said it's pleurisy."

"OMG, that's so painful!  Remember when Dave had that?  It was awful, he couldn't breathe and he was in so much pain!  I'm so sorry."

"Yeah, this sucks."

"We can walk slower.  It's okay."

Late April, 2017; Thursday at 4:30 am; walking

"I feel really bloated and uncomfortable."

"What's going on?  Are you drinking enough water?"

"I drink...  I don't know.  Like five or six of those big" - she pantomimed with her hands, indicating a huge serving size - "like, Big Gulp sized cups at work.  Plus one or two more at home."

"Holy shit!  Are you serious?  That's waaaay too much water!  Victoria!"  My voice was rising and I was getting worked up.  "You know you can DIE from drinking too much water, right?"

Early May, 2017; Thursday at 4:30 am; walking

"It just feels like I can't catch my breath.  I can't breathe in all the way."

I didn't know what to say.  I didn't know what could make her feel like that.  We kept walking and I listened while she fretted.

"It hurts, but it's not like a sharp pain.  It feels like it's everywhere" - she waved her hands over most of her torso, and then suddenly stopped walking.  "It feels like this."

She wrapped her arms around my ribcage and pressed against me.  Not hard, but firmly.  Unrelentingly.

"It feels like I'm constantly being squeezed."

I didn't reply, but I put my arms around her shoulders and hugged her back.

"Pahla, I'm just afraid that it's going to be cancer."

"What?"  Finally, I had something to say.  "That's ridiculous!  What makes you even think that?"

"I don't know.  I'm just worried."

May 15, 2017; Monday at 8 am; getting ready for the day

"fuck" read the first text.

"FUCK FUCK FUCK FUCK FUCK" came the next one immediately, followed by the screen shot of the email she had received from her oncologist with the results of an ultrasound of her liver.

"... enlargement of the liver, consistent with cancerous growth..."

"... innumerable lesions, consistent with cancerous growth..."

"... recommend biopsy to confirm..."

I called her, and she answered right away.

"Fuck."

May 18, 2017; Thursday at 5 am; walking slowly

"Pahla, there's no way I can do the Bay to Breakers."

"I know.  I already put it out of my mind.  I know."

"Next year.  For sure."

"Definitely."

May 21, 2017; Sunday near noon; walking into my mother's apartment

"Mom, I'm about to drop a bomb on you and then leave.  I'm really sorry."

"Okay.  What's wrong?"

"Vicki spent the night in the ER.  She was in a lot of pain and could barely move.  Wally is bringing her home right now, and I need to borrow the wheelchair you used when you broke your leg."

"What?  What's going on?"

I looked her right in the eyes and delivered the bad news the same way I would do it again and again (and again) over the next seven months:  like a punch to the gut, swift, merciless and without hesitation, because this shit was happening and if I started to cry now, I probably wouldn't stop.

"They think she has cancer."

"What?" she cried, sitting back onto the arm of the couch and wailing, "No! No no no no no!  What?  How?"

"I don't have more details," I said, hugging her.  "And I need to go so I can be there when they get home.  Can you handle this?"

There was a long pause while she wrapped her head around my words.

"Yes," she finally said.  "I can handle it.  Go take care of your sister."

May 21, 2017; Sunday near noon; walking into my sister's garage; she is in the front passenger seat eating Taco Bell and has rolled down the window

"No.  I don't want to see you.  You're going to make me cry."

I plopped down in the wheelchair to wait and rolled over to the side of the car.

"Go ahead and eat first.  Then we'll cry together."

May 21, 2017; Sunday near noon; sitting in the swivel chairs in Vicki's family room

"Nate and Julia will always have a home with me."

"They shouldn't have to!" she wailed, sobbing.  She was bent over at the waist with her elbows on her knees and her head in her hands.  I was crouched in front of her, holding her as tightly as I dared.  She was in pain, but she was also sad and not hugging her was not an option.  My legs were cramping, and sweat was pooling behind my knees.  I wanted to change position, but I stayed where I was, rubbing her back and helplessly listening to her cry.

"Okay.  I have to stop crying.  It hurts to cry."

May 24, 2017; Wednesday at 6 pm; with concerned family and friends in Vicki's living room

"The doctor today confirmed what we already knew," Wally announced.  "It's metastasized breast cancer in Vicki's liver, which they are saying is incurable."

Vicki and I were silent.

There was no comedy routine for this one, nothing to say.  So we sat across the room from one another and listened to Wally relay the information about chemo, prognosis, pain meds and other details from the doctor's visit.

Early June, 2017; Thursday at 8:30 am; sitting on the barstools in Vicki's kitchen

"You'd better not fucking haunt me.  That is not okay with me."

"Whaaaaaaaat?  I am totally going to.  It'll be fun."

"Fun for you, maybe.  Not for me," I said, lightly.  "And fuck you for leaving me alone to take care of mom.  You suck."

"Nyah, nyah!  I finally get my revenge.  She's all yours."

I rolled my eyes.

"You are such a bitch."

"Right?"

Last Words

Almost immediately after Vicki's diagnosis of terminal metastatic breast cancer, I started mentally preparing myself for her death by picturing it.  Constantly.

But since I had never seen somebody actually die before, I really had no idea what we were all in for, and imagined it quite wrong.  I'll blame TV for that - the image of healthy actors and actresses lying comfortably in a clean bed and saying something poignant at the end is ingrained in everybody's psyche as the way it "should" happen.

So, months before her death, I imagined the conversation we would have before her last breath and it went something like this:

Scene:  a modestly lit hospital bed, possibly in a real hospital, with a sick-looking but still recognizable Vicki looking deeply into my eyes and bravely sharing a final joke with me.

Me, with gentle tears glistening in my eyes:  I love you so much, I'll miss you.

Vicki, maybe with a labored breath or a wistful smile:  It was terrible.  She was a breech...

Me, also smiling with reminiscence:  You're all right now.

Vicki dies, I cry photogenically and end scene.

In case you don't recognize it, the dialogue is from She's Having a Baby (a classic John Hughes movie from the 80s with Kevin Bacon and Elizabeth McGovern), and something that Vicki and I had said to each other thousands of times over the years when one or the other of us was complaining about something minor.  You know, like dying.

There are several things to note about this fantasy:

• Yes, I was the star of Vicki's death scene, which was pretty much in keeping with our relationship before her diagnosis.  She gave, I took.  She delivered the straight lines and I got to be funny.
• We were both quite calm and stoic about her impending death, as though she was doing something as mundane as getting ready to go out to dinner.
• We both understood that it was our last words to each other and wanted to share a final sweet moment together.

When Vicki was really dying, though, there was nothing cinematic about it at all.  Grim reality does not belong on the big screen.

She spoke her final words, not from her death bed (which was, indeed a hospital bed, but it was positioned just two feet from her real bed in her real bedroom), but on the seat of a hospice-issued bedside commode.

It was Tuesday, and she was quiet but restless.  She had stopped recognizing me the day before and had spoken very little since Sunday night.

The hospice nurse the day before had classified Vicki as "imminent," meaning that her time was likely coming in the next two weeks and issued us all kinds of meds to help keep her calm and pain-free.  The nurse had explained the end-of-life process in a reassuring way that was still just utterly overwhelming.  I was wildly under-prepared for any of this.

The hospital bed had been delivered the night before, and we struggled to get Vicki into it.  She was so weak she couldn't stand or really even pull herself up.  Her husband Wally and I rolled her over and positioned her in a way that we could transfer her... well, not easily, but with the least amount of effort from her.  It was sweaty, heart-pounding work and I knew it was hurting her.  She moaned and protested, but it had to be done.

Vicki was quickly losing her control over her motor functions and the box of hospice personal supplies hadn't arrived yet, so Wally left to run to the store for Depends while I stayed alone with our girl.

I was terrified.

She was so frail and seemed to have so little comprehension anymore of what was going on.  I hoped she was comfortable in the hospital bed and that she could simply rest.

So of course she tried to get up.

Fuck.

"What do you need, pretty girl?"

She was making noise, but none of it was words.  She was trying to move, but was unable to go anywhere.  The only time she'd made any attempt to sit up in the past two days was when she needed to go to the bathroom, but there was absolutely no way she'd be able to walk all the way into the bathroom anymore.  I didn't think I could help her up by myself, but the thought of her lying in her own shit in a hospital bed was so unacceptably indignant to me that I sprang into action anyway.

I told her to stay put and grabbed the bedside commode, getting it as close to her as possible, between her hospital bed and the other bed.  I helped her roll to the side and sit up.  I told her I needed her help and she had to stand for a second and pivot onto the chair.  It was impossible to tell if she understood me, but I wrestled her into position and up we went onto her feet, then - plunk! - unceremoniously she dropped onto the commode.

My heart was thudding out of my chest.

What if she fell?  What if I was hurting her?  What if she fucking died and it was all my fault?

She clawed at the arm rests on the commode.  I told her it wasn't a chair, it was a toilet.  She could go, it was okay.  She made noise and I wasn't sure what she was trying to tell me.  Did she understand what I was saying?

She protested and tried to move.  I held onto her and explained again, trying to keep the panic out of my voice.

I had wedged my right hip up against the big bed and spread my left leg on top of hers, braced against the hospital bed.  I held her around the middle as tightly as I dared, as she swayed like a drunken sailor on rough seas and groaned with frustration.

Nothing about this situation - my beautiful, confident sister sitting bald, skeletal, half-naked and uncomprehending on a temporary toilet, in pain and unable to do even the smallest thing for herself - was like anything I had ever wanted for her.  I felt sick and helpless.

"I'm sorry, baby.  I'm so, so sorry."

She looked at me in the way that dying people look, which is to say that her dull, unfocused eyes were aimed more or less in my vicinity, and she said, "I know."

I'm pretty sure that everybody else in the family got "I love you, too" as their final words from Vicki.  She said it so many times in her last weeks of life, responding to all the love showered on her.

But I got something different.  Perfect for me, perfect for our relationship.  Vicki said something to me that was better than a joke, better than love, and - even though I would have greatly preferred another 40 or 50 years of "last words" together - better than I could have imagined all those months before.

In that moment, holding on to each other, I wasn't just apologizing for the indignity of the commode.  I was sorry for everything:  the cancer, her pain, my failings as a sister, every slight, every insult, every hurt big or small that she'd felt in her whole life.  I was sorry for it all.

And she knew.

My Sister is Dead and I Don't Know What to Do with My Hands

Vicki died last Friday, December 15th at 12:12 pm, nearly seven months after her diagnosis of metastasized breast cancer.

In her last week, pretty much everyone and everything was in constant motion.  The nurses, her kids, the meds, coming and going, visitors, people bringing meals, rushing home to attend to my own family.

I barely slept, I barely ate, I barely had time to think.

And now, now that she's gone, I have nothing but time.  I have the rest of my life to think.

So, I'm starting this blog.  Mostly so I'll have something to do with my hands, but maybe so I can work through some of those thoughts.

Grief is funny.  Like, not funny ha-ha, but funny odd.  It changes from hour to hour, minute to minute.  It's changing as I type this sentence.

I want something to do.  I want a LOT of somethings to do.  But today, just sitting on the couch and watching Season 3 (yes, nearly the whole thing) of The Office felt like a lot of work, a serious effort.

My mind is manic, but my body is sluggish.

I guess I'll figure this out as I go.

Pre-diagnosis, early morning workout with a friend

Soon after Vicki's diagnosis, we were sitting in her front room, just talking.  I had left for vacation, scouting out colleges in southern California with my youngest son, just a few days after she received her life-changing news.  I had missed her first chemo treatment and we were all trying to understand and accommodate this "new normal."

We talked about inconsequential things.  Celebrity gossip, if I had to guess, and maybe neighborhood gossip or something about our kids and families.  I asked about her treatment, of course, and she asked about the campuses we had visited.  It was awkward, almost like small talk with a stranger.

Over the next not-quite seven months, things would change dramatically between us, but on this particular day, she was still my big sister.  The protector, the one in charge, the one who could always make things happen.

We didn't really talk about the cancer, or at least about the fact that her diagnosis was terminal.  We talked about wigs, and how we would continue our weekly Thursday morning walks.  We danced around the subject, but didn't address it directly.

As I got up to leave, I hugged her, and looking back now I think that was the last really good strong hug I got from her, because very soon afterward was when the port ("Natalie Portman," as we not-so affectionately referred to it) was put in and she started putting her left hand up to protect it.

Hugs changed, too.

I held her tightly and could feel myself starting to cry.  She felt it, too, and she said quietly, "We'll figure it out."

I've thought about those words a lot since then, and repeated them dozens of times in the last few weeks, as our world is again rocked by change and I'm struggling to adjust to another "new normal."

I guess I'll figure it out.