The end of August means…

… that tomorrow will be September and the year is imminent.  My aunt died on September 22, 2012.  Five weeks later, my Grama died, too.  It’s getting rough again.  I’m feeling exhausted all the time, distracted, my concentration is shot.  Sometimes.  I’m still productive for the most part.  But then there are the flashbacks.  I keep thinking of little things I haven’t thought of since last year.  The seasons, the heat, the end of summer events… all are triggers that shoot memories to the surface of the sad dreading, the unknown, the watching and waiting. 

I remember rubbing my aunt’s feet and legs, swollen so full and tight that it looked like they could crack open from the bloating.  I remember medications, so many medications to organize and provide.  I remember waiting while her swirly, medicated mind tried to make sense, tried to manage, tried to order these endless medications.  She was smart and stubborn and determined not to overmedicate, but her mind wasn’t clear.  So patience was required. 

I remember her alarm.  It’s that alarm on the iPhone that sounds like a 4 alarm fire disaster, I don’t know how else to describe it.  Every once in a while I hear a neighbor in my building with it, and I’m brought right back into bolting up out of unrestful sleep in my cousin’s room… time for meds

It was a year ago this weekend that I moved in part time with my aunt.  To take care of her presumably until she died at home like she wanted.  It only lasted for 2 weeks, til she couldn’t take it anymore, til she got too weak and shuffly like an old woman, til she asked to go to inpatient hospice.  For peace. 

a month or so

yesterday was 4 weeks and tomorrow will be one calendar month since my aunt passed away.  still when i really allow it in, it seems completely unreal.  i have a stack of her funeral programs laying in a pile on shelf, somewhat out of site.  i don’t pick them up.  then once in a while i do and i see her picture and i read her name and i don’t know what the hell it’s talking about.

about a month ago i had debated on a friday night about whether i could handle going out there.  my cousin sent me a text saying that the doctor told her to keep things quiet but that we should visit if we wanted to.  i didn’t really know what that meant, i was confused.  and i was so tired – physically and emotionally.  i decided that going to the gym saturday morning and then heading over to hospice would be fine.  she’d been not dying for so long, i thought she might be immortal.  i mean for real, she hadn’t eaten in like 7 weeks.  except that this week, to guage whether the “dry up” meds were working on her rotting stomach, she was on a steady diet of blue freezie pops and juice.  she was living it up.  i had time.

saturday morning i woke up at 6:45am.  without an alarm.  i just can’t sleep in.  i laid in bed, waking up, thinking about which class i might take at the gym, dazing out.  my phone rang.  i didn’t know the number but i kind of knew it was hospice.

hello?

hi, this is the nurse at hospice. 

hi…

andi asked me to call you.  barb just died. 

uhh… ummm! … ok.  ok.  ok i’m on the way. 

ok. 

quick urgent breaths.  bolting upright.  i called my mom.  she answered the phone and i couldn’t speak.  she understood.  my heart was pounding.  i threw the clothes back on that i discarded the night before and ran down to my car.  the breathing and the crying and the panic and the peace and thankfulness and the highway.  that’s what i remember.

barb just died.  she was so matter of fact, i’ll never forget how that sounded.  i read a lot of grief blogs these days.  some people say that we should take the prettier, lighter sounding phrases out to make it more real.  she didn’t pass away, she died.  i still don’t know how i feel about that.

last monday i started grief counseling and i will go weekly for a while and then probably space it out further.  the two most important pieces i’ll take away from the first session are that

1. compartmentalizing is a coping strategy not to be looked down upon, i need to use it to get through my day, but i do need to look at the grief intentionally when it’s appropriate, and

2. taking care of my aunt while she was at home before inpatient hospice was deeply emotional, traumatizing, scary.  but like many things, i shifted my mind to the reality of it, normalized it, and kept it moving.

3 of us were taking care of her at that time, but it was more of a tag team than joint effort, and that was stressful.  i really need a place to process the fact the people who could truly understand what i went through in that situation were not emotionally available to me;  we didn’t talk about it.  we shared care plans and went on our way, out the door into a world that wasn’t so heartbreaking.

this all happened so fast.  and i adjusted to each change so that i could survive through it.  time to go back and process through the disaster that hit my life this summer.  it’s so strange to move forward and look back.

i really miss you, barb – where did you go? 

not a courageous battle

i’m going to say some ugly things, but they are real for me, and i give myself permission to speak my truth.

i became aware of these ugly feelings when i was talking to my out of town besties about how it went down with my aunt.  i’ve found several times that people assume that a person who gets cancer relatively young (58) doesn’t want to die.  in this case, that’s a wrong assumption.  deciding not to get treatment was not a difficult decision for her.

to be sure, when you get a recurrance of cervical cancer, your chances are very slim for a recovery.  for most people, chemo doesn’t do anything during your second occurance.  you would mainly be hoping to slow the growth and expansion of the cancer.  prognosis the second time around is bad.

my aunt was a person who thought things through, who weighed the evidence, made informed decisions.  the statistics, her finances, the odds.  but if i stop romanticizing it, her first words to me were about how her children were grown, her husband was dead, and her mother didn’t need her anymore.  in addition she hated her job and lived alone.  what did she have to live for?  she presented such a passionate, pitiful, and convincing argument… really… what could i say?  i bought it.  you can’t inspire a person to appreciate life who is plainly over it.

her oncologist recommended she try at least one round of chemo.  she nitpicked the details of his approach and pushed the option off the table.  what for?  she asked.  a few more months?  my best friend is a doctor, he visited her and encouraged her to look into a second opinion at the university hospital.  maybe there was a drug trial.  maybe there were other methods of treatment.  she half-heartedly agreed to look into it.  i never heard anything more about that.

now that she’s gone, i think back on this summer.  did this really happen?  at the beginning of may i was looking forward to finishing grad school and starting a gleefully unstructured new life.  a couple weeks later, i was staring at her death sentence  and convincing myself to get on board, support her, normalize this idea of giving up on life.

sitting around the table at the funeral home, brainstorming her obituary, we were trying to decide whether to put her cause of death in the announcement.  i said aloud that she didn’t really fight cancer.  she didn’t lose a battle.

some of the condolence cards i’ve received have talked about her courage.  i have blinked past the words, numbing out, holding her up saintly, respecting the dead.  but the truth is, she didn’t want to live.  she did not try to live.  she was not afraid to die, but she was afraid to die in pain.  she felt absolutely awful about leaving us and would cry those pitiful tears, putting me in the position to blurt out those compulsive words of reassurance, it’s not your fault.  but the truth is, she did leave us.  without a fight.  with this depressive narrative that runs through many members of our family, talking about how life isn’t worth it.

i’ve said before that i respect her decision not to seek treatment.  i still mean that, i can respect that choice.  but i’m starting to come into the anger and hurt and disbelief.  i am facing my initial feelings that i shoved into a little box in my stomach back in may.  she didn’t want to live.  i was not enough, me and my sometimey companionship.  her children were not enough – they don’t live with her anymore.  her life was not enough to fight for.  and it feels like shit.  and i’m so mad.  i want to call names.  like coward.  keeping these ugly feelings in a box in my stomach with a pretty bow called acceptable grieving is not going to serve me now.

keep it together anyway.

in the season finale of greys, everything falls apart, the situation is just unreal.  meredith wants to lose her shit really bad, and christina tells her to keep it together anyway.

it’s the motto of this time for me.

it’s cervical cancer again for my aunt.  they had to give her a gastric bypass to give her a way to eat since a tumor was blocking her the route from stomach to intestine.  she stayed in the hospital nearly 2 weeks after that operation waiting for this new route out of her stomach to start working.  it was kind of a holding pattern, maybe even a weirdly merciful way to give us time to process the idea that she’s going to die.  in the hospital she could be taken care of, have the social workers talk to her about different options, give her time to decide if she’ll go back to work, retire, what will happen as far as insurance, income, life.

the first time around with cancer was incredibly difficult for my aunt.  the treatments laid her out, she has different allergies to medicine, and her body heals differently than others typical heal.  it was nearly unbearable for her to get through it the first time.  many times over the phone or when we would visit, she would exclaim through bitter, pitiful, heart wrenching tears that she didn’t think she could do this.  it was terrible to watch, i can’t imagine what it was to go through that.

at that time, i stayed drunk.  i was convinced she was going to die at cancer diagnosis.  my uncle, her husband, had died in 2005 after beating his own cancer.  it’s not always the cancer that gets you.  it’s what can happen to your weakened body and its systems afterwards.  so in my consistently drunken haze i prepared melodramatically for her death.  and she didn’t die.  there have been a few scares since.  i would get all worked up along with her.  but eventually i made a decision for myself, in many areas outside of this, not to pre-mourn.  just wait for the actual test results before you freak out.

the results are in, it’s time to freak out.  and i allow it, at the right times.  i cry like a baby sometimes.  the shock is wearing off some now.  i think at this point she has decided not to seek any treatment.  i don’t blame her.  she says the doctors must think she’s crazy, declining to try new medications and experiement with treatments.  but i admire her.  there’s something very lovely and powerful about taking your life back into your own hands.  she says, and i agree, that it’s kind of ridiculous the way technology prolongs life these days.  and what would her quality of life be anyway if she’s recovering from treatments with no guarantee of it helping (second round of cervical cancer doesn’t have a very high recovery rate).  so we’ll see what happens.  in 2 weeks she’ll go back to the oncologist and see what they have to say.  in the meantime, my cousin has decided to get married this summer, so we’ll have something happy to look forward to.

life is so different from one month ago.  thinks can change in a heartbeat.  another month from now, i’ll be done with grad school, there will be a wedding around the corner, and i don’t know how my aunt will be.  originally they gave her 3-4 months from diagnosis.  we’ll have to see.  we didn’t know whether to tell grama, she can’t hear at all anymore so it wasn’t a moral so much as physical dilemma.  i went to visit her on her birthday last week.  i brought flowers and gave her a manicure.  being there, telling her about my aunt didn’t cross my mind because it just wasn’t a possibility – we can’t communicate anymore.  she talks and i nod or shake my head.  this lack of communication frustration soared to new heights when grama leaned over to me, twice, and asked if i knew that she was planning to kill herself.  since she can’t hear me, all i could do is go numb and shake my head.  she has no means or ability, but what a fucked up thing to say.

keep it together anyway.

i’m doing my best.  the good times have me practicing excellent self care:  eat right, run, go to work, give only what i can, get enough sleep, text, call, visit, do it again.  worse times i watch endless hours of tv while playing games to keep my mind occupied, eat shitty, shove off exercise, text back, hermit, sloth, numbness.  get up the next morning and try again.  i’m thankful to be going through this without alcohol.  it would only be worse, more melodramatic, and guilt-ridden on top of that.  so i focus on feeling sometimes and not feeling other times.  getting my work done, going to class, working on papers.  keep it together anyway.  it’s amazing how one foot still goes in front of the other.  life goes on.

the circle of life can kiss my ass

(from 5/7/12)

i have a nearly 94 year old grama and i certainly thought she would be next.  we got the terrible news yesterday that the stomach blockage that brought my aunt to the hospital last week is cancer, most likely a recurrence of cervical cancer.  hundreds of tiny massess are all over her stomach and intestines.  it’s not operable, we’re waiting for a biopsy to see how treatable it might be, but it’s not looking hopeful.  she’s 58.  she’s like my second mom.

i don’t like goodbyes.  i try to avoid them.  i outrun them whenever possible.  i cried every day for a week over leaving my last job, saying goodbyes little by little to my coworkers at the restaurant.  the thought of a long goodbye makes me want to vomit.

yesterday sitting with my aunt when she got the news, all the thoughts that go through my mind…  be strong.  fuck strong, be real.  cry.  it’s ok.  be there for her. be present myself.  cry uncontrollably.  swollen eyes and face.  cry some more.  stop crying.  laugh.  make a joke.  laugh together.  cry together.  call my mom.  watch her tell her kids.  cry some more.  listen to her make plans.  wonder what’s going to happen.  why is this happening?  i hate this.  why her?  what am i going to do?  what’s going to happen to our family?  i’m going to lose grama, too.  i’m the only one left who’s gonna take care of business.  how am i going to watch her die?  listen to her apologize for leaving us.  watch her cry.  cry some more.  i fucking hate this.  if i ever get married and have kids, they’re not gonna know auntie barb.  my cousins are losing both their parents before mid twenties, before marriage, before kids.

i’m very sensitive sometimes to the passage of time, watching life.  i feel it so deeply sometimes, just observing it.  sometimes it’s lovely.  and sometimes it just fucking blows.