the other side.

1/8/12

my grandma was in the hospital all week. it started with some bleeding, and a CT scan revealed some lesions on the liver and kidney. the liver was biopsied, so now we wait.

i love control. at work, in my real life, i like to be in charge. i like my routine, and i don't like change. i like being able to micromanage. with my patients, i like to be able to see all of their labs, read all of their notes, and quietly obsess over vitals and I+Os. i know when the creatinine is trending up that we need to DC the toradol, and i know when the K is borderline to get rid of it in the IV fluids. i can usually tell who we're going to need to transfuse, and I know who's going to be a problem child because their WBCs are so high.

but i don't know how to be a family member of a patient. i don't know how to wait for information that i'm used to looking up or paging someone until i get an answer. i don't know where i'm supposed to put this anxiety. and none of the platitudes that i offer to my patients and their families like "one day at a time" are working for me.

and if we don't know the results of the biopsy, then why does grandma need to meet with an oncologist on wednesday?

all that i've pictured for the last 4 days are the faces of the people that i've taken care of who have been dying of cancer. the patients that i've sent to hospice with only a few weeks left. and the black and white newspaper obituaries that sometimes get pinned to the bulletin board.

i am on the other side now. and i am terrified.

12/12/12.

my grandma died 5 days ago.  i guess if i had to, i would say that it was a lot like i pictured it.  at the end she didn't look like herself at all.  my family told me she was "sleeping a lot", but really she was unresponsive for about 4 days before she died.  and the other side?  it's hard, for sure.  the hospice part of it was hard.  sitting for hours around the bed of someone who doesn't even know you're there.  having to deal with the onslaught of well-meaning people who say nice things that only make you feel worse.  'there isn't anyone like your grandma anymore'.  thanks for reminding me.  and the nursing staff at the home where she died?  don't even get me started.  the LPN was so clearly terrified of the dying process that she practically ran in the room, shoved the syringe of liquid morphine down grandma's face, and ran out without so much as a "is there anything i can do for you?".  some people apparently are too busy for compassion.

but i digress.

it's hard for me to believe that 11 months after i wrote this, grandma is gone.  it seems like a long time, but also not nearly long enough.  and i knew exactly what was coming, but it was all still, somehow, such a surprise.

cancer is a horrible thing.  her's was "urothelial"...bladder but not bladder, kidney but not kidney.  by the time they found it, it had mets to the liver and to the pelvis.  i still am shocked at how it got so big with no symptoms at all.

or, if we're being honest, i look back on a UTI that i told my grandma to get checked out the easter before she was diagnosed and see that as "the sign".  in 20/20 hindsight, i blame myself for not knowing, which is stupid, i know.  but i digress again.

she did so well for awhile.  not sick.  didn't lose her hair.  moved slower than usual, and couldn't do as many things, but still ok.

and we had such a nice summer...it was a cancer stay-cation.  no chemo, no radiation, just a 3 month long pause to pretend like nothing was going on.  and pretend i tried.

but then after that, the scans were worse.  the liver met was 4 inches round.  there were new lesions in the spine and the lungs.

and, one day, she couldn't walk to the bathroom.

that led us to 14 days in the hospital, which was pretty much hell.  MY hospital, to be exact.  who's surprised that i had a hard time giving up control of her care? no one?  ok.  to my credit, i did only helpful family member things and knew my place.  i made suggestions when asked, but did not completely take over.  and as hard and stressful as that time was, i felt like i knew what was going on.  the nurses saw me come in, they knew who i was.  they would talk with me honestly, and take my concerns seriously.  the doctors were nothing but receptive and kind, and made sure that grandma got what she needed.  so maybe it wasn't hell after all.

the nursing home on the other hand...now that could probably be considered hell.  the nursing home is a book all it's own.  as someone who had relatives in the home for years starting when i was young, i take issue with the environment as a whole.

first of all, why on earth is there a big bird cage in every home?  birds are creepy, their eyes are blank, and when you park a bunch of drooling slumped over seniors in front of them...it's what horror movies are made of.  also: nursing home smell?  gross.  shared rooms (especially when someone is dying), so awkward.  and the barking cough of the guy across the hall?  PERTUSSIS.  i google-audioed it.  seriously people, what's wrong with you.

and oh, the staff.  lord have mercy the staff.  my personal favorite would have to be the 'charge nurse' who told my mother that she really had to let them give grandma something for pain because "i just can't handle her screaming like that".

ok, lets back it up here for a second.
1.  we did not say you couldn't give her anything for pain.  we just didn't want you to give her the ridiculous amount of pain meds that made her hallucinate that she was dead and call my family at 3 am to tell them to call the funeral home because she was in heaven.
2. do you have something against senna?  because i'm pretty sure that our pain issues have something to do with the fact that you have given her so many pain meds that she can't poop ever again.
3. this nurse also told my family that we wouldn't have to turn grandma anymore, because it was "too painful, and now you have that special air mattress so we don't have to worry about it".  she's lucky i wasn't there for that one, or else i would have strongly considered punching her face.
4. also, i could care less what you CAN'T HANDLE.  this is not about you, for the record.

(rant over)

so the end.  the end was not as bad as i thought, and also kind of worse than i thought.  i have seen people die before, this is true.  it's different when it's someone you love.  and if i had to describe the experience, i'd call it surreal.  it feels like it happened to someone else.

i was there.  i held her hand as she took her last breath.  my mom was there too, and my aunt, but i was the only one who knew what was going on.  i was the only one who could tell it was so close.  when you're on the other side, you know too much.  and also you forget that other people don't know as much.  it's lonely.

i thought that "the moment" would be bigger than it was.  it wasn't.  to me, she was already gone.  she was gone the minute she wasn't who she always was: my sassy, opinionated, fearless, strong grandma.

and now she's gone.

it's very strange.  in a lot of ways, i feel the same.  i have been grieving this loss for 11 months.  i have been scared that her death would be so horrible that it would overshadow her life.  that i wouldn't be able to remember the good times because my mind would be so full of the painful images of her last days.  that she would become some sort of cancer-ridden "shell" person that would rob me of the woman i knew and loved.

but that didn't happen.

and i'm not scared anymore.  just sad.  really really sad.

i don't know how much of this is ok to say.  i drafted the original post because it was "too personal", and i don't really do that.  but this is the only way i know to get the feelings out.  the only way i know to process this loss.

12/17/12

we buried my grandma today.  she's no longer in pain.  i'm no longer afraid.  is it wrong to be so relieved?  for the past year, i've been a little cynical, i must admit.  cancer was constantly on my mind, and anything awful that happened in the world, whether it had anything to do with me or not, came as a personal attack.  it felt like the world was dark, and just getting darker.

it makes no sense to me that now, ESPECIALLY now, with all the horrors of the past week, that suddenly i can see the good in the world.

but i am seeing it.

and after feeling so sick at heart for the past year, so scared of the unknown, already grieving for what was yet to come...for the first time in a LONG time, i feel some peace.