Defining Hope
Special | 56m 47sVideo has Closed Captions
A film that jump-starts critical conversations to define what makes life worth living.
An award-winning film that captures people who are weighing what matters most at fragile junctures in life, and the nurses who guide them and help carry out their decisions. The documentary follows eight patients with life-threatening illnesses as they make choices about how they want to live, how much medical technology they can accept and how their hope evolves when life is threatened.
Defining Hope is presented by your local public television station.
Distributed nationally by American Public Television
Defining Hope
Special | 56m 47sVideo has Closed Captions
An award-winning film that captures people who are weighing what matters most at fragile junctures in life, and the nurses who guide them and help carry out their decisions. The documentary follows eight patients with life-threatening illnesses as they make choices about how they want to live, how much medical technology they can accept and how their hope evolves when life is threatened.
How to Watch Defining Hope
Defining Hope is available to stream on pbs.org and the free PBS App, available on iPhone, Apple TV, Android TV, Android smartphones, Amazon Fire TV, Amazon Fire Tablet, Roku, Samsung Smart TV, and Vizio.
[RAINING] WHEN THEY COME HERE, THEY THINK, "OK, I'M GONNA DIE.
THIS IS THE END OF IT FOR ME."
"YOU KNOW, I'M IN CALVARY HOSPITAL.
AND ANYBODY THAT COMES IN CALVARY NEVER EVER LEAVES."
MOST OF THE TIMES, THE PATIENTS ARE HERE FOR THE END OF LIFE, JUST TO GIVE THEM THE DIGNITY BEFORE THEY PASS.
I'VE WITNESSED MANY OF THEM.
I'VE WITNESSED DEATHS THAT ARE SO COMFORTABLE AND SO QUIET, AND THEY JUST GO TO SLEEP.
IT REALLY CAN BE SUCH A PEACEFUL, PEACEFUL MOMENT.
YOU KNOW, AND THE FAMILY'S HERE, AND SOMETIMES IT'S SO BEAUTIFUL, SO BEAUTIFUL.
AND YOU'RE LIKE, "OH, MY GOSH, THAT'S WHAT I WANT TO BE LIKE WHEN I GO," YOU KNOW?
[CLATTERING] [UNZIPS ZIPPER] HI.
HOW ARE YOU?
GOOD MORNING.
MY NAME IS DIANE RYAN.
I'VE BEEN HERE FOR 7 YEARS.
I'M A STAFF NURSE.
I DO DIRECT PATIENT CARE, AND I LOVE IT!
[PEOPLE SPEAKING INDISTINCTLY] THAT'S FINE.
SEE, THAT'S GOOD.
SO SHE'S NOT ON CRITICAL YET?
OK. RYAN: IN A HOSPITAL, THEY TRY HEROIC MEASURES.
THEY TRY EVERYTHING TO KEEP YOU ALIVE.
AND NOBODY EVER LOOKS AT THE PATIENT AND SAYS, "WELL, YOU KNOW, LET'S TRY ANOTHER APPROACH.
LET'S MAKE YOU COMFORTABLE."
WHERE WE'RE MORE OF A HOSPICE AND NOT A HOSPITAL IS THAT WE GIVE THEM ALL THE COMFORT MEASURES THAT THEY WANT WITHOUT ALL THE CHEMO, WITHOUT ALL THE RADIATION.
WITHOUT ALL THE, YOU KNOW, THE INTUBATION AND THE BLOOD DRAWS AND THE IV STUFF.
OOH OOH OOH.
DO YOU NEED HELP IN THERE?
WE SEE PATIENTS COMING IN JUST BECAUSE THERE'S NO FURTHER TREATMENT THAT THEY'RE ABLE TO GET OR THEY'VE GOTTEN SO MUCH TREATMENT THAT RIGHT NOW THAT THEIR BODIES JUST CAN'T TAKE IT ANYMORE.
SO BY THE TIME WE GET THEM TO THEIR--THEY'RE PRETTY BAD OFF.
RYAN: HI, GUYS.
ALL RIGHT, I'M GONNA TURN HER.
WOMAN: MY MOM, CAROLE BAILEY, IS 71, AND SHE WAS DIAGNOSED LAST YEAR OF AUGUST WITH STAGE 4 UTERINE CANCER.
SHE FOUGHT IT LIKE A CHAMPION, AND SHE UNDERWENT CHEMO.
CHEMO IS A HORRIBLE THING, BUT IT'S A GREAT THING IF IT'S WORKING.
AND THAT'S WHAT WE HAD DECIDED-- LIKE, LET'S WAIT AND SEE WHAT THE NUMBERS SHOW.
IF THE NUMBERS SHOW THAT IT'S WORKING, THEN LET'S KEEP GOING A LITTLE MORE.
WE'RE GONNA TURN YOU BECAUSE YOU CAN'T STAY ON THAT ONE SIDE.
DO YOU UNDERSTAND?
ALL RIGHT.
[DAUGHTER SPEAKING INDISTINCTLY] AND IF THIS--LISTEN, IF YOU ARE IN PAIN, WE'LL, UM... LOOK, I'LL GET YOU SOME MORE PAIN MEDS AFTER.
ALL RIGHT?
HERE WE GO.
OK. BAILEY: OHH!
OK. ALL RIGHT, SWEETIE.
THERE YOU GO.
I KNOW, I KNOW.
DO YOU WANT SOMETHING TO DRINK?
YOU WANT TO WET YOUR WHISTLE A LITTLE BIT?
WET--HA HA!
YOU WANT TO WET YOUR WHISTLE?
DAUGHTER: AFTER A COUPLE MONTHS OF THE CHEMO, THE NUMBERS WERE HIGHER.
SHE JUST DECIDED SHE DIDN'T WANT ANYMORE.
AND, UM, KNOWING IT'S THE RIGHT THING BECAUSE IT WASN'T WORKING.
DOING GOOD.
YOU'RE DOING GOOD.
PROUD OF YOU.
THIS WAS MY MOM'S 21st BIRTHDAY, AND MY DAD WAS JUST 22.
THEY JUST REALLY HAD A GREAT RELATIONSHIP.
IT WAS A REALLY HOT DAY, THEY SAID.
HER VEIL CAUGHT ON FIRE AT THE CHURCH, RIGHT?
YOU WERE BACKED UP AGAINST THE CANDLES?
HOW DID THEY PUT IT OUT?
JUST WITH THEIR HANDS?
HA!
YEAH.
DAUGHTER, VOICE-OVER: SHE REALLY WAS MUCH STRONGER THAN I THOUGHT SHE WOULD BE.
AND SHE REALLY, REALLY TRIED HARD.
[VOICE BREAKING] HER BIG THING IS, UM, SHE DOESN'T WANT TO LEAVE THE KIDS.
RYAN: I REALLY HOPE THAT MY END OF LIFE, KNOWING WHAT I WANT AND MY WISHES AND MY FAMILY, IS GONNA BE VERY QUIET AND PEACEFUL.
I'VE WORKED IN THE EMERGENCY ROOM, AND I THINK THAT'S WHERE MY FIRST, LIKE, EXPERIENCE WAS WITH LIFE-SAVING.
"WE ARE GONNA SAVE THIS 87-YEAR-OLD PERSON THAT'S COMING INTO THE EMERGENCY ROOM.
"WE'RE GONNA--WE'RE GONNA PUT THIS PATIENT ON A CARDIAC, YOU KNOW, DRIP, AND WE'RE GONNA-- WE'RE GONNA INTUBATE 'EM."
I REMEMBER SAYING, "I THINK SHE'S DEAD.
I THINK SHE'S PASSED."
AND SHE'S STRIPPED, LITERALLY, FROM HEAD TO TOE.
THEY'RE TAKING OFF HER CLOTHES.
THEY'RE-- AND THIS POOR 87-YEAR-OLD WOMAN, WHO PROBABLY NEVER EVEN HAD A MAMMOGRAM IN HER WHOLE LIFE, IS NOW IN THE MIDDLE OF OUR EMERGENCY ROOM, STRIPPED.
AND THEN, THE SADDEST THING, WHEN THEY FINISHED AND THEY CALLED THE CODE, THEY LEFT HER THERE.
THEY JUST LEFT HER.
AND NOW YOU HAVE HER FAMILY IN THE WAITING ROOM, WAITING TO SEE THEIR MOTHER.
SO IF I CAN GIVE THESE PEOPLE JUST THAT ONE BIT OF DIGNITY, I DID MY JOB--I'M GOOD.
AND I THINK THAT'S WHAT REALLY, REALLY PULLED ME INTO HOSPICE AND PALLIATIVE CARE YEARS AGO, AND I LOVE IT.
COME ON, KIT.
LET'S GO.
LET'S GO IN.
LET'S GO GET FED.
[CLUCKING TONGUE] COME ON.
COME ON!
[POPPING LIPS] COME ON!
RUN!
COME ON, GIRL.
[CONTINUES INDISTINCTLY] OH!
[KEY TURNS IN LOCK] HI!
HELLO?
HI, BABY.
WHERE'S MY FAMILY?
HOW'S EVERYBODY DOING?
NOBODY FED THE ANIMALS?
OH, LOOK AT THIS!
HI, BIG DADDY.
HELLO.
RYAN: HOW WAS SCHOOL?
BOY: GOOD.
WHAT DID YOU DO?
NOTHIN'.
SCHOOLWORK.
RYAN: COME ON, YOU WANNA GO UPSTAIRS?
COME ON.
BOY: CAN I GO CHECK?
I JUST CAME THROUGH THE FRONT GATE.
IT'S NOT HERE.
IT'S NOT COMING.
YOU SURE?
YEAH, I'M SURE.
YOU CAN'T BELIEVE EVERYTHING YOU READ LIKE THAT.
IT SAID 2-DAY SHIPPING.
REALLY?
YOU BELIEVE THAT?
HAVE YOU LOST YOUR MIND?
DO YOU WANT ME TO GO GET THE OUTSIDE CAT FOOD AND FILL THE BOWLS?
OH, YEAH.
LOOK AT HIM.
IS HE ALIVE?
HE DON'T LOOK TOO GOOD.
I KNOW.
IT'S NOT EASY BEING A BUNNY.
I KNOW.
I KNOW.
YOU'RE GETTING OLD.
YOU'RE OLD.
RYAN, VOICE-OVER: PEOPLE DON'T TALK ABOUT DEATH AND DYING.
THEY JUST DON'T.
WELL, THE FACT THAT WE ARE OUT THERE NOW, SPEAKING ABOUT HOSPICE AND COMFORT CARE AT THE END OF LIFE AND WHAT IT'S LIKE.
I THINK PEOPLE NOW OPEN UP A LITTLE BIT--NOT A LOT, BUT A LITTLE BIT-- AND JUST A LITTLE BIT MAKES THE BIGGEST DIFFERENCE.
I THINK IF I WAS EVER SICK, I'D LOVE TO BE HERE.
IN FACT, I KNOW EVERYBODY, SO THEY'LL TAKE CARE OF ME.
HA HA HA!
AND I'M A REALLY BAD PARKER.
HI, SUNSHINE.
WOMAN, WEAKLY: HEY.
HOW ARE YOU?
YOU KNOW WHAT WE'RE GONNA DO RIGHT NOW?
BECAUSE THIS IS BECOMING SUCH A, LIKE A HAZARD WHEN YOU WALK, LET'S GIVE IT A SHOT AND LET'S DISCONNECT IT AND CAP IT FOR RIGHT NOW.
ARE YOU OK WITH THAT?
YES.
OK. ALL RIGHT, IT'S ONE LESS TUBE WE NEED, RIGHT?
OK. OH, YOU WERE ALL KNOTTED UP.
HA HA HA!
MM-HMM.
OH... YOU WANT TO REST?
YEAH.
OH... RYAN: FOR A VERY LONG TIME, I FIGURED, "OH, SHE'LL NEVER MAKE IT HOME."
SHE SAYS, "I'M GOING HOME, I'M GOING HOME."
AND SHE HAS THE MOST POSITIVE OUTLOOK IN LIFE.
AND SHE JUST SITS BACK, AND SHE GOES, "I'M GONNA PROVE YOU ALL WRONG."
YEAH.
I'LL CHECK IT.
MORNING, JULIA.
[DRAWER CLICKS] HOW ARE YOU?
HOW DID YOU SLEEP?
WOMAN: MY NAME IS CARMEN HERNANDEZ.
I'M FIGHTING WITH THIS SINCE '97, AND THEN I WENT TO REMISSION, AND THEN IS COMING BACK.
I GOT A LOT OF GOOD MEMORIES, BUT THE MOST IMPORTANT FOR ME IS MY KIDS.
WOMAN: SHE'S ALWAYS TALKED ABOUT, YOU KNOW, WHEN I GET MARRIED.
I'M HER FIRST DAUGHTER TO GET MARRIED, SO I JUST WANTED IT TO BE SPECIAL FOR HER.
THE WHOLE WEEK, IT WAS RAINING, AND THEN THAT DAY, IT WAS NICE, RIGHT?
MM-HMM.
YEAH.
IT WAS NOTHING LIKE BIG OR-- IT WAS--IT WAS SOMETHING THAT WE DON'T EXPECT... TO BE LIKE THAT, TO BE SO BEAUTIFUL, SO... FULL OF LOVE.
IT WAS--WAS AMAZING.
5 MONTHS, 6 MONTHS, 1 YEAR--I DON'T CARE.
I'M HERE NOW.
WHEN I OPEN MY EYES, AND I SEE THROUGH THE WINDOW AND I SEE THE BIRDS AND THE WIND, I DON'T TAKE LIFE FOR GRANTED NO MORE.
I'VE LEARNED A LOT THROUGH HER.
SOME PEOPLE DON'T EVER KNOW WHAT THIS FEELS LIKE.
IT'S A BAD FEELING.
IT'S A BAD SITUATION.
IT'S A BAD EXPERIENCE, BUT I THINK IT JUST MAKES YOU A STRONGER PERSON AND YOU LEARN HOW TO DEAL WITH THINGS BETTER, LIKE HOW TO COPE BETTER, HOW TO BE A BETTER HUMAN.
YOU LEARN TO LIVE.
YOU LEARN TO LIVE.
I WANT THEM--IF THEY REMEMBER ME...
THEY REMEMBER ME WITH JOY.
[MULTIPLE RAPID KISSING SOUNDS] [EQUIPMENT BEEPING] RYAN: HI.
IT'S DIANE ON 4 NORTH.
SHE'S REALLY HUNGRY AND SHE'S VERY UPSET.
IS THERE ANY WAY WE CAN GET HER SOME MASHED POTATOES?
THAT'S ALL SHE SEEMS TO BE EATING TODAY.
I GOT IT FOR YOU, OK?
IS THERE SOMETHING-- WHAT ELSE IS BOTHERING YOU?
WHAT'S THE MATTER?
WHAT?
[CRYING] IS THAT WITH THE KIDS OR WITH THE GRANDKIDS?
THOSE WERE GOOD TIMES.
OK.
I DON'T BLAME YOU.
I WOULDN'T WANT TO BE ALONE EITHER IF I WAS GOING THROUGH THIS.
RYAN: UM...UM...OH.
I HAD, UM...
I HAVE OVARIAN--I WAS DIAGNOSED WITH OVARIAN CANCER IN AUGUST OF 2013.
I WAS NEVER SICK, NO SYMPTOMS, ENERGY, STILL WORKING OUT-- I FELT GREAT.
AND HAD A WHOLE HYSTERECTOMY AND THEY TOLD ME, "YEAH, YOU HAVE METASTATIC OVARIAN CANCER STAGE 3."
AND I WAS UP ON MY UNIT.
AND THERE WAS A MOTHER.
SHE WAS 34 YEARS OLD.
SHE WAS A MUSLIM WOMAN.
SHE WAS LOVELY.
I MEAN LOVELY WOMAN.
AND SHE HAD THIS OVARIAN CANCER METASTATIC, AND THERE SHE DIED.
AND THERE WAS HER KIDS BEHIND THE CART THAT TOOK HER AWAY.
AND ALL OF US, I MEAN ALL OF US JUST, LIKE, BAWLED.
I SAID, "OH, MY GOD, IT'S GONNA BE ME.
WHAT AM I GONNA DO?
I HAVE 2 KIDS."
YEAH, WE ALL DO.
YOU'RE NO DIFFERENT THAN ANYBODY.
WE'RE ALL GONNA CRY.
WE'RE GONNA CRY WITH YOU.
[BLOWING NOSE] [SNIFFS] THAT'S NORMAL.
IT'S OK. YOU'RE A REAL STRONG LADY.
NO.
I THINK SO.
I THINK-- MISS FERNANDEZ.
HERE.
I CAN TELL YOU'RE IN PAIN, TOO.
[BEEP BEEP] YOU WANT TIME?
I'LL GIVE YOU TIME.
[BEEP] RYAN: I REMEMBER BEING SO SICK.
I WAS HOOKED EVERYWHERE.
I HAD A TUBE EVERYWHERE.
I'M THINKING, "IS THIS WHAT PEOPLE GO THROUGH?"
I WAS TREATED FOR 9 MONTHS-- 8 MONTHS.
IT FEELS LIKE FOREVER.
AND I'M CURED, SO THEY SAY.
I'M CURED, BUT IT COMES BACK.
SO THEY ASK ME AT ONE POINT, "YOU KNOW, IF YOU CAN'T TAKE CHEMOTHERAPY ANYMORE, WHAT IS IT YOU WANT TO DO?"
AND I TOLD MY DOCTOR.
I SAID, "LISTEN.
IF THIS IS NOT GONNA WORK, "YOU KNOW, I'VE ALREADY TOLD MY FAMILY, YOU KNOW, 'DON'T LET ME SUFFER.'"
[EQUIPMENT BEEPING] WOMAN: IN HOME, SHE WOULD NEED A LOT OF SERVICES.
AND IF WE CAN GET HER HOME, WE'LL DEFINITELY DO THAT.
RYAN: SHE REALLY WANTS TO GO HOME.
WELL, WE HAVE TO ALSO BE REALISTIC WITH HER AND LET HER KNOW ALL THE OBSTACLES SHE'S GONNA HAVE, 'CAUSE SHE'S GONNA HAVE A LOT.
RYAN: I THINK YOU NEED TO ASK.
IT'S SO INDIVIDUALIZED ABOUT WHAT PEOPLE WANT.
I REALLY AM VERY MUCH AN ADVOCATE.
YOU KNOW, MAKE YOUR PLANS.
[STEPHENSON SNIFFS] WOMAN: LOOK, YOU GOTTA STOP THAT CRYIN'.
DIDN'T I TELL YOU I'M COMIN' TO YOUR HOUSE?
YES.
AND WHEN I COME, YOU BETTER OPEN THE DOOR.
DON'T ACT LIKE YOU DON'T KNOW WHO I AM.
[LAUGHTER] BYE-BYE.
TAKE CARE.
MAN: IN THE REST OF THE COUNTRY, PEOPLE OPT FOR HOME HOSPICE SOMETHING LIKE 40% OF THE TIME.
IN NEW YORK CITY, IT'S MUCH LESS.
I HAVE A THEORY THAT SO MANY PEOPLE HAVE COME TO NEW YORK CITY 'CAUSE IF THEY CAN MAKE IT HERE, THEY CAN MAKE IT ANYWHERE, AND DEATH IS JUST NOT PART OF THEIR PLAN, SO... HOSPICE IS HARD TO ACCEPT.
MY NAME'S GILBERT OAKLEY.
I STARTED HOSPICE ABOUT, I GUESS, ABOUT 8 YEARS AGO.
I WAS WORKING IN AN OFFICE, AND WE SHARED A FLOOR WITH HOSPICE.
AND WE USED TO JOKE ABOUT HOSPICE BECAUSE IT WAS-- YOU'D HEAR THEM SINGING AND YOU'D SMELL INCENSE.
AND THE PEOPLE THAT WORKED IN HOSPICE JUST SEEMED KIND OF GRANOLA, TOUCHY-FEELY, REALLY NICE, REALLY CONVERSATIONAL AND EVERYTHING.
AND IT WAS LIKE, "THIS JUST SOUNDS LIKE THE BEST JOB IN THE WORLD."
I'M THE NURSE, AND IF YOU'RE MY PATIENT OR YOU'RE MY FAMILY, YOU HAVE TO LET ME INTO YOUR HOUSE.
THEN YOU WILL ALSO HAVE ACCESS TO A SOCIAL WORKER AND TO A SPIRITUAL COUNSELOR AND TO VOLUNTEERS AND A DOCTOR.
BUT I'M SORT OF RESPONSIBLE TO BE THE POINT PERSON.
HA HA HA!
THANK GOODNESS.
OK, SO YOU HAVE NOT HAD ANY FALLS IN THE LAST WEEK.
IS THAT CORRECT?
NO FALLS.
OK. ALL RIGHT.
MORE THAN A WEEK SINCE HE FELL.
NO FALLS.
OK. YEAH, IT SEEMS LIKE YOU'RE DOING FINE.
AH.
DO YOU FEEL THAT WAY?
YOU FEEL THAT WAY?
YOU FEELING BETTER?
EH.
HOW--HOW-- HOW'S IT GO-- HOW DO YOU FEEL?
WHAT DO I WANT YOU TO TELL ME?
OH, NO.
TELL ME, TELL ME, PLEASE!
HURT MY FEELINGS.
WHAT DO YOU EXPECT AT 95?
FAIRLY NORMAL LIFE.
OK, I'M GLAD YOU SAID THAT.
[BLOOD PRESSURE CUFF OPENS] YEAH...YEAH.
WOMAN: I THINK I WAS 16 YEARS OLD.
HE WAS THERE WITH HIS PARENTS, AND SOMEWHERE I TALKED TO HIM.
I DON'T REMEMBER.
AND THEN HE MADE A DATE WITH ME THE NEXT DAY.
WE GOT MARRIED IN BROOKLYN.
WE HAD A LUNCHEON.
AND I THINK WE HAD FRANKFURTERS AND POTATO SALAD.
IT WAS THAT TIME A BIG DEAL.
HA HA HA!
IN BROOKLYN, ON EASTERN POMFRET, WE USED TO HAVE A BUSINESS-- YARNS, BUTTONS, NOTIONS.
WE HAD A WHOLE WALL WITH BUTTONS.
OAKLEY: YOU COME INTO THE APARTMENT BEING PRESENT, ALIVE, UPBEAT, AND NOT FALSELY, GENUINELY.
YOU LOOK FOR PLACES TO HELP AND HAVE A GOOD TIME.
THE MOST IMPORTANT THING IS, HE WEIGHED 130 TODAY, CORRECT?
I ASK HIM EVERY MORNING.
AND HAVE YOU HAD TO TAKE ONE OF THE METOLAZONE AT ALL THIS WEEK?
NO, NOT THE LAST 3 DA-- DIDN'T YOU SAY 129 A FEW DAYS AGO?
YOU WERE A POUND LESS.
130.
OK.
WHEN YOU'RE 131, WE WANT YOU TO TAKE ONE.
AND THEN IF HE TAKES THE METOLAZONE-- IF YOU WERE TO HAVE TAKEN IT TODAY-- HE DIDN'T-- NO MATTER WHAT YOU WEIGHED TOMORROW, YOU WOULDN'T TAKE IT.
WOULDN'T TAKE IT.
HE HASN'T TAKEN IT.
I PUT IT AWAY.
HE DOESN'T HAVE IT.
I HIDE IT.
THEN YOU COME TO ME, AND I'LL GIVE IT TO YOU.
YEAH.
ALL RIGHT, SO--SO THAT'S GOOD.
YOU KNOW, WITH THE NUMBER OF MEDICATIONS THAT YOU TAKE, YOU COULD BE A GENIUS AND GET MIXED UP.
OAKLEY: A LOT OF THE TIME, YOU REALLY NEED TO JUST GET DOWN TO BUSINESS, TEACH SOMEONE HOW TO ADMINISTER A MEDICATION, ADMINISTER IT, FIGURE OUT HOW TO GET THE NAUSEA AWAY, HOW TO GET THE SHORTNESS OF BREATH AWAY.
AND THEN ONCE THAT'S DONE, YOU STILL HAVE TO DEAL WITH "WHAT DO I WANT TO DO FOR THE REST OF MY LIFE?"
AND "DO I WANT TO EVEN LIVE?"
AND ALL OF THAT.
THE OTHER THING THAT WE TALKED ABOUT LAST WEEK WAS YOU GOING OUT ALONE.
NO.
RIGHT.
AND SO YOU AGREE THAT THAT'S NOT A GOOD THING TO DO-- NO, HE DOESN'T.
OK, YEAH.
IT'S BECAUSE IF YOU HAVE ANY TROUBLE ON YOUR OWN, PEOPLE ARE GONNA COME AND THEY'RE NOT GONNA LISTEN TO YOU IF YOU SAY, "I'M OK." THEY'RE GONNA CALL 911, YOU'RE GONNA GO TO THE EMERGENCY ROOM, AND YOU LOSE ALL CONTROL.
EXACTLY.
WOMAN: FROM WHAT HE TELLS ME, I DON'T WANT TO THINK ABOUT THE FUTURE.
AT 95, HE CAN'T GET MUCH BETTER.
AND HOW LONG CAN HE LIVE?
MY CHILDREN ARE VERY SUPPORTIVE TO US, BUT THEY'RE NOT HERE.
WOMAN: I WILL TALK TO MY FAMILY.
AND I THINK IF IT'S IMPORTANT, IF SOMETHING HAS TO BE DONE, IT SHOULD BE DONE, NOT--NOT HAVE IT...
RIGHT.
AND THEN--AND THEN-- AND THEN WE GOT TO THAT POINT IN THE CONVERSATION, AND YOU WERE SAYING, YOU KNOW, "I DON'T WANT TO GO BACK TO THE HOSPITAL AT ALL."
BUT HE DOESN'T REALIZE WHAT IT TAKES.
YEAH, BUT YOU MIGHT HAVE TO DO IT TO HELP YOU.
IF IT'S A MATTER OF CERTAIN THINGS-- RIGHT.
THEN YOU SHOULD SAY "YES."
OTHERWISE, YOU GO DOWNHILL.
OK?
MORE, FASTER.
WELL, WHAT I WILL DO IS IF YOU SAY TO ME, "I WANT TO STAY HOME, I DON'T CARE WHAT HAPPENS," THEN I'M GONNA SAY, "WE'RE GONNA--WE CAN MAKE THAT WORK."
I'LL STAY HOME.
I DO HEAR YOU.
I WILL SUPPORT YOU IN THAT.
IF YOU SAY, "I WANT TO GO INTO THE HOSPITAL," I WILL SUPPORT YOU IN THAT.
BUT IF YOU CAN HELP HIM MORE IN THE HOSPITAL... HA HA HA!
I KNOW.
HA HA HA!
RIGHT.
OAKLEY: I WENT IN TO BE A NURSE BECAUSE I JUST FELT LIKE I WAS GOOD FOR THE SITUATION.
YOU'RE IN A JOHNNY, IN A BED, AND YOU'VE GOT TUBES IN YOU, AND YOU'RE DEHUMANIZED.
AND I FEEL THAT, YOU KNOW, WHAT A NURSE HAS AN OPPORTUNITY TO DO IS GO IN AND KIND OF NORMALIZE THAT SO THAT YOU DON'T JUST BECOME A PART OF ALL THE MACHINERY.
WE'RE OFF THE BEATEN PATH A LITTLE BIT IN THAT THERE'S A...
THERE'S THE RECOMMENDATION FROM YOUR DOCTOR WHAT YOU SHOULD DO.
AND THEN IF YOU DECIDE NOT TO DO THAT, THEN WHAT?
SO WHAT ARE WE GONNA DO?
[RAINING] [TRAIN WHEELS CLACKING] WOMAN: OK, MR. BILOTTI, WHEN DID YOU SERVE?
BILOTTI: 1943 TO '46.
THAT SOUNDS LIKE WORLD WAR II.
WHAT DO YOU MEAN "IT SOUNDS..."?
THAT WAS WORLD WAR II!
AND WHERE WERE YOU STATIONED?
IWO JIMA.
WE MOPPED UP.
WE WERE ALSO THE INVASION OF OKINAWA.
IT WAS BEDLAM.
EVERYTHING OPENED UP, AND THAT FOG WAS MURDER.
WE COULDN'T SEE THEM OR ANYTHING.
I WILL NEVER FORGET.
WOMAN: AND NOW, YOU STILL VOLUNTEER AT THE VA.
I'M VERY HAPPY, 'CAUSE IT'S A VERY GOOD PART OF MY THERAPY, SITTING DOWN AND STAMPING TICKETS, AND TALKIN' TO MY FELLOW VETERANS.
I'M VERY COMFORTABLE WITH THEM, AND I LOVE THEM.
OH, THAT'S WONDERFUL.
I CERTAINLY LOVE THEM-- WOW.
EACH AND EVERY ONE OF THEM.
WHEN I SAW YOU BEGINNING OF THE WEEK, YOU SAID, "I'M NOT BETTER.
I'M NOT GETTING BETTER."
YOU WERE REALLY UPSET.
YES, I WAS, I WAS.
I THOUGHT THIS WAS IT.
I COULDN'T BREATHE AND I CAN'T CATCH MY BREATH.
THEN THEY CHECK OUT MY HEART, MY LUNGS, AND MY KIDNEYS.
AND YOUR KIDNEYS.
YOUR KIDNEYS HAVE NOT BEEN IMPROVING THAT MUCH.
RIGHT, RIGHT, RIGHT.
AND WE TALKED ABOUT POSSIBLY IF YOU WERE TO GO ON HEMODIALYSIS.
I PUT "NO."
I GOT THE PAPER.
YEAH.
NO, I WON'T GO THERE.
IT'S GONNA PROLONG THE DEATH-- YEAH.
THAT'S ALL IT'S GONNA DO.
AND THAT'S NOT MY CHARACTER.
YEAH.
YOU'RE ALL NATURAL.
100%, MR. BILOTTI, YEAH.
THAT'S THE WAY I WOULD-- WELL, THAT WOULD BE PUTTIN' IT VERY NICE.
YEAH.
TRUE.
THAT'S IT.
I MEAN, IT'S... YOU KNOW, WE TRY TO STOP THAT.
YOU CAN'T DO IT.
RIGHT.
I SIGNED THE PAPERS.
YEAH, YOU DID.
AND THAT'S IT.
SO YOU DON'T WANT TO BE RESUSCITATED-- NO, NO, NO.
IF YOUR HEART STOPS?
BREATHING MACHINE?
OK. YOU'RE NOT AFRAID?
AFRAID OF WHAT?
DYING?
WHO'S NOT AFRAID?
WE'RE ALL AFRAID OF DYING, BUT IT'S A NATURAL THING.
BUT WE CANNOT... HALT THE INEVITABLE.
WOMAN: SO YOU'RE READY TO GO?
BILOTTI: YES, I AM.
DR. BEALE AND I WILL TALK WITH YOUR HOSPICE NURSE.
OK, FINE, FINE.
WE'LL KEEP IN TOUCH.
VERY GOOD.
THAT WAY, YOU'RE-- AND YOU CAN COME BACK ANY TIME.
YOU KNOW THAT.
THANK YOU, THANK YOU, THANK YOU.
YOU'RE ALWAYS WELCOME HERE.
AND YOU HAVE YOUR PINK FORM?
YOU HAVE YOUR MOST FORM?
NO, IT'S IN THERE.
OK, GOOD.
YEP.
JUST WANT TO MAKE SURE.
ALL THERE.
OK. YEAH.
YOU VALUE THIS, RIGHT?
OH, YEAH.
YEAH.
AND TELL ME WHAT YOU'RE GONNA DO WHEN YOU GO HOME.
THE FIRST THING I'M GONNA DO IS I GET SETTLED DOWN AND MAKE MY FAMOUS CHICKEN SOUP.
OK. HA HA!
YOU LIVE ALONE, RIGHT?
SO WE'RE GONNA GET YOU SOME HELP AT HOME.
THEY'RE GONNA BRING SOME HELP IN.
OK. AND THEY'LL GIVE ME NO OXYGEN.
THE LAST TIME, THEY GAVE ME OXYGEN.
I GOT A BILL FOR ONE MONTH--$630.
WELL, YOU KNOW WHAT.
THE HOSPICE HAS A SOCIAL WORKER WHO CAN WRITE TO CON ED ABOUT THAT.
OAKLEY: IN HOSPICE AND IN HOME CARE, IN GENERAL, IT'S A GROUP EFFORT.
SO IF YOU'RE A SOCIAL WORKER AND I IDENTIFY SOME ISSUE, I SHARE.
INSURANCE ISSUES, APARTMENT ISSUES-- WE MEET WEEKLY AND WE TALK ABOUT EVERYTHING AND SORT OF FIGURE OUT WHAT WE CAN DO TO SOLVE PROBLEMS.
WOMAN: NOW, YOU KNOW WHAT HOSPICE IS, RIGHT?
BILOTTI: YES, YES.
MY WIFE HAD IT.
MY WIFE HAD CANCER FOR 8 1/2 YEARS.
WE WENT BACK AND FORTH TO STATEN ISLAND EVERY WEDNESDAY.
SHE WAS ON CHEMO FOR 8 YEARS.
I KNEW SHE WAS GONNA DIE, BUT I DID EVERYTHING IN MY POWER.
BUT AT THE END, THAT WAS IT.
THAT WOMAN WAS EVERYTHING TO ME... EVERYTHING.
YOU LOVED YOUR MOTHER, YOU LOVED YOUR FATHER, YOU LOVED YOUR BROTHERS, YOU LOVED YOUR SISTERS, BUT THERE'S NOTHING LIKE A WIFE BECAUSE IT'S SOMEBODY YOU COULD RELATE TO.
HOW LONG WERE YOU MARRIED?
60 YEARS.
60 YEARS.
WOW.
[SIGHS] YOU MISS HER.
IF THEY WOULD HAVE TAKEN MY RIGHT ARM, TAKE IT, BUT KEEP MY WIFE HERE.
MY HAPPINESS, WHEN I DIE, TO BE WITH HER.
AND I ASKED MY SON ONE LAST WISH: PUT ME WITH YOUR MOTHER-- WHICH I'M GOING TO CALVERTON CEMETERY-- AND THAT'S IT.
AND I WILL BE THE HAPPIEST CORPSE YOU EVER HAD.
OAKLEY: WHEN I COME INTO A HOME WITH A MAN WHO'S END-STAGE LUNG CANCER, I'M COMING IN AT THE VERY END OF A LONG STORY.
AND NOT EVERY OLDER PERSON DYING IS SORT OF THIS NATURAL, YOU KNOW, ESKIMO-GOING-OFF- ON-AN-ICE-FLOE KIND OF THING.
IT CAN BE VERY TRAGIC, BECAUSE YOU'VE GOT A SON OR DAUGHTER OR A HUSBAND OR WIFE WHO IS JUST GONNA BE TOTALLY...LOST.
RIGHT.
SO, WHAT I WANT YOU TO DO IS I WANT YOU TO LEAN FORWARD.
AAAH!
LOOK AT THAT.
OH, WOW.
GREAT.
WOMAN: HE SLEEPS MORE.
HE CAN SLEEP ALL DAY, FROM ONE MEAL TO THE NEXT.
AND HE GOES TO BED AND HE SLEEPS AGAIN.
HE SLEEPS.
HE'S WEAK.
DO YOU KNOW YOU'RE MOVING SLOWER--SLOWER THESE DAYS?
YOU CAN TELL, RIGHT?
YEAH.
HA HA HA HA!
WOMAN: MY CHILDREN HAVE ASKED ME.
THEY'VE SAID, "MOM, YOU CAN'T STAY ALONE."
MY KIDS ALWAYS HAVE TO MAKE PLANS AND PLAN.
YOU HAVE TO, AT THIS POINT, YOU HAVE TO TAKE THINGS DAY BY DAY.
YOU'RE GONNA GET THE SHOPPING CART.
I WASN'T USED TO IT.
WE ALWAYS WENT OUT EVERY DAY.
WE HAD THE CAR.
WHERE AM I GONNA GO?
I DON'T LIKE TO GO BY MYSELF.
MY BIG GOING-OUT LATELY IS GOING TO KEY FOOD AND DO SHOPPING.
[HISSING] RYAN: ARE YOU AWAKE?
HA HA!
HOW ARE YOU?
YOU KNOW WHAT.
WE'RE GONNA GET YOU OUT OF THIS BED RIGHT NOW.
OH, GEEZ LOUISE.
[SPEAKING SPANISH] NO, NO.
YOU WANNA SIT UP?
HUG ME, HUG ME, HUG ME, HUG ME.
AH.
FEEL GOOD?
ALL RIGHT.
COME HERE.
AHH... YEAH!
SHE DID GREAT.
OH, MY GOSH.
WOMAN: THIS IS MY MOM.
SHE RAISED US.
SHE DID A GREAT JOB.
MA?
MAMI.
WOMAN: THIS IS WHEN SHE FIRST CAME TO THIS COUNTRY.
MAN: SHE WAS HOT.
HA HA HA!
SHE'S BEEN HAVING ALZHEIMER'S FOR THE LAST 6 YEARS.
SHE WAS VERY TALKATIVE.
MY MOTHER TALKED, LIKE, 24 HOURS A DAY.
SOMETIMES WE USED TO WONDER, LIKE, "WHEN IS SHE GONNA STOP TALKING?"
AND THEN ONE DAY, SHE JUST STOPPED.
I JUST WISH I HAD MY MOM BACK.
THIS IS HOW I LIKE TO REMEMBER HER.
SHE USED TO LIKE TO DANCE AND SING.
SHE SANG WHILE SHE WASHED DISHES.
SHE SANG WHEN SHE WAS CLEANING.
I WAS PLAYING SOME SPANISH MUSIC FOR HER THE OTHER DAY.
AND OVER HERE, I THINK SHE'S SO BEAUTIFUL.
THE SMILE.
REMEMBER THIS SONG?
[SINGING IN SPANISH] [SINGING IN SPANISH] YEAH, THIS IS YOUR SON, RAUL.
YOU REMEMBER HIM?
SHE JUST STARTED CARESSING ME.
AND--AND THE WAY-- [CRYING] IT REMINDED YOU WHEN SHE USED TO DO IT WHEN YOU WERE A KID, RIGHT?
YOU KNOW, AND IT FELT BAD BECAUSE HERE I AM.
I'M FEEDING MY MOTHER, AND MY MOTHER-- USED TO FEED YOU.
ALWAYS FEED ME.
AND NOW IT'S-- IT WAS HARD.
RYAN: OH, THANK YOU.
A-HA!
LOOK AT THE SMILE!
WHO IS THAT LADY?
WHO IS THAT BEAUTIFUL LADY?
MAN: I DON'T KNOW.
RYAN: HUH?
I DON'T KNOW.
WOMAN: WELL, MY FATHER, HE WAS DIAGNOSED WITH CANCER 4 YEARS AGO.
WE WERE TRYING EVERY EXPERIMENTAL DRUG, EVERYTHING.
WHATEVER THEY WOULD TELL US TO DO, WE WOULD DO.
THEY CALLED ME OUT TO THE HALLWAY, AND THEY SAID, "YOUR DAD IS DYING, SO HE NEEDS TO GO TO CALVARY."
SO I SAID, "IF HE'S GONNA DIE, HE WANTS TO DIE AT HOME WITH MY MOM."
OVER HERE, YOU CAN SEE THE LOVE THAT THEY HAVE FOR EACH OTHER.
HOW COULD YOU BE WITH SOMEONE 57 YEARS?
LOOK AT YOUR HUSBAND.
HE LOOKS SO HANDSOME THERE.
RAUL: HE JUST CAN'T DO IT ANYMORE.
HE DOESN'T WANT TO DO IT ANYMORE.
YOU CAN NEVER BE READY FOR-- NO, YOU CAN NEVER BE READY, BUT YOU KNOW WHAT.
WE CAN'T BE SELFISH AND TRY TO KEEP THEM.
TO ME, THEM BOTH BEING HERE IN CALVARY, I FEEL LIKE THEY'RE BOTH GONNA LEAVE TOGETHER.
RYAN: HE WAS READY TO PASS.
HE WAS IN PAIN.
HE WENT ON A MORPHINE DRIP, BECAME COMFORTABLE, AND HE JUST WENT VERY, VERY QUIETLY.
HE JUST WENT TO SLEEP.
BUT THE CHILDREN WERE ALL AROUND, SO IT WAS REALLY LOVELY.
OH, MY GOSH.
I'VE HAD A LOT--MAJORITY OF MY PATIENTS-- I HAVE TO SAY, MAJORITY OF PATIENTS SINCE I'VE BEEN HERE HAVE PASSED AWAY.
AND I THINK ONCE, WHEN I HAD MY FIRST PATIENT PASS, I'M THINKING, "YOU KNOW WHAT.
"THIS IS THE WAY DEATH SHOULD BE.
THIS IS THE WAY IT SHOULD BE."
YOU KNOW, I THINK YOU HAVE TO APPRECIATE LIFE BEFORE YOU CAN APPRECIATE DEATH.
I THINK ALL OF US NURSES HERE EXPERIENCE A LOT OF EMOTIONS AS OPPOSED TO WORKING IN A REGULAR HOSPITAL.
IT'S--IT'S VERY DIFFERENT.
AND WHEN PEOPLE SAY, "YOU COME TO CALVARY, AND YOU LEAVE IN A BAG," IT KIND OF CRUSHES ME, 'CAUSE I DON'T LOOK AT IT THAT WAY.
WE'VE ALWAYS GOTTEN TO KNOW THE FAMILIES AND THE PERSON, YOU KNOW, THE WHOLE FAMILY-- WHAT THE PERSON WAS REALLY LIKE.
SO IT IS HARD.
I'VE DECIDED THAT I'M COMING BACK-- WHEN I DIE, I'M COMING BACK AS MY CAT OR MY BUNNY.
OAKLEY: I ALWAYS THOUGHT, "MAN, IF I GET A TERMINAL DIAGNOSIS, "THIS IS WHAT I'M GONNA DO: "I'M GONNA GO FISHING AND I'M GONNA GO DO THIS, AND I'M GONNA SPEND TIME HERE."
AND I'VE HAD ONE SCARE IN MY LIFE, WHERE I REALIZED THAT WHAT YOU THOUGHT YOU WOULD DO IS NOT NECESSARILY WHAT YOU WOULD DO.
YOUR SITUATION IS AS IT IS, AND WHAT'S THE SUCCESS UNDER THOSE CIRCUMSTANCES?
IN OTHER WORDS, IF SOMEONE SAYS, "YOU'RE GONNA GO NOW, OR YOU GOT 4 MONTHS," WOULDN'T YOU--I MEAN, I WOULD TAKE THE 4 MONTHS.
THAT WOULD BE A GIFT FROM HEAVEN.
THAT WOULD BE, LIKE, A WHOLE LIFE!
AND ONCE YOU GET ON THAT TRACK, YOU'RE ON IT, AND THEN YOU GO FROM ONE STEP TO THE NEXT, AND PRETTY SOON YOU FORGOT WHERE YOU CAME FROM, IN A WAY.
YOUNG MOTHERS, IF THEY CAN SEE THEIR KID FOR ANOTHER DAY, THAT'S WORTH EVERYTHING.
I DON'T FEEL SORRY FOR MY PATIENTS.
I DON'T.
I MEAN, I FEEL BAD FOR THEM, AND I FEEL VERY BAD FOR YOUNG PATIENTS.
I DON'T WANT THEM TO FEEL SORRY FOR THEMSELVES.
I WANT THEM TO JUST MAKE HAY.
RYAN: IN THE BEGINNING OF FEBRUARY, I WAS TOLD MY CANCER CAME BACK.
JUST--IT'S HORRIBLE.
DO YOU THINK I'M GONNA GO BALD?
LOOK.
MY HAIR IS THINNING.
IT WILL THIN.
AM I GONNA GO BALD?
NO.
YOU SURE?
YEAH.
OK.
I WAS JUST ABOUT TO DONATE THE WIG, WHICH I NEVER WORE THE WIG, I NEVER WORE IT.
I DON'T KNOW HOW PEOPLE WEAR A WIG.
THE WHOLE THING FALLS ALL OVER THE PLACE.
GOD FORBID YOU GO "WHOO!"
THE WHOLE THING "WHOOSH!"
JUST TOOK IT AWAY.
THERE'S A SMELL... ALL RIGHT, I HAVE 2 MORE QUESTIONS.
YES.
YOU'RE GONNA KILL ME.
NO, I'M NOT.
DO YOU LOSE YOUR TASTE WITH THIS?
OH, YEAH.
AND THE SMELL... YOU GET VERY SENSITIVE TO SMELLS, AND YOUR TASTE IS GONNA CHANGE.
OK, SO THE NEUPOGEN CAUSED YOU A LOT OF PAIN?
OH, MY GOD.
I THINK IT'S A MIXTURE OF EVERYTHING.
IT MADE ME SICK.
THAT BONE PAIN IS TERRIBLE.
THE LAST TIME YOU GOT NEUPOGEN IN YOUR FIRST TREATMENT, DID ANYTHING WORK?
FOR THE PAIN?
YEAH.
I DON'T REALLY REMEMBER.
I WAS HOPING NEVER TO HAVE TO REMEMBER.
I NEVER THOUGHT I'D BE BACK HERE, SO... ALL RIGHT, I HEAR YOU.
ALL RIGHT, TAKE A DEEP BREATH FOR ME.
HOLD IT, HOLD IT.
BLOW IT OUT.
[EXHALES] OK. OK. WOMAN: I REALLY AM 99% SURE THAT YOU ARE GONNA BE FINE.
WELL, THERE'S STILL 1%.
I KNOW, BUT THAT'S OK.
THERE'S 1% FOR ALL OF US.
I'M NOT AFRAID TO DIE.
I'VE NEVER BEEN AFRAID TO DIE.
I GET HIT BY A BUS, I DIE.
I DON'T--I DIE.
IT'S HOW WE ARE GOING TO DIE.
LIKE, I DON'T THINK I WANT TO BE ON A BED, SICK AS A DOG.
IF HE CAME BACK AND HE SAYS, "WELL, DIANE, YOU KNOW, IT'S REALLY SPREAD NOW."
MAYBE IT'S IN MY LUNGS, MAYBE IT'S IN MY LIVER OR MY PANCREAS, I PROBABLY WOULDN'T HAVE TAKEN EXTREME MEASURES.
I WOULD HAVE DONE MORE COMFORT CARE THIS TIME.
I WOULD HAVE.
I WOULD NOT HAVE--'CAUSE I KNOW AT THE END, IT JUST GETS WORSE.
I WOULD HAVE GAVE MYSELF A QUALITY OF LIFE AS OPPOSED TO A QUANTITY.
WOMAN: YOU'LL BE FINE.
YOU'RE NOT GONNA DIE.
AND WHAT IF I DO?
THE BOYS WILL BE FINE.
BUT YOU'RE NOT READY TO, RIGHT?
NO.
OK, GOOD.
JUST--JUST ASKING.
NO, I'M NOT READY.
NOT YET.
GOOD.
AT LEAST I DON'T THINK SO.
I GUESS I REALLY CAN'T THINK ABOUT THAT PART.
I WANT TO SEE GABRIEL GRADUATE.
HI.
AH, DOCTOR, HOW ARE YOU?
DOCTOR: HOW LONG DOES IT MAKE YOU FEEL UNWELL WHEN YOU GET THE NEUPOGEN?
UM, IT'S USUALLY A DAY.
IT GOES AWAY.
I'VE NOTICED THAT IF I CAN GET UP AND GET MYSELF TO GET WALKING, I DO BETTER.
YOU KNOW?
I LIKE TO BIKE RIDE, BUT... MAY 1st.
YOU WILL BE THERE.
YOU'LL BE READY FOR MAY 1st.
I HOPE SO.
MAN, ON MICROPHONE: ALL RIDERS... 10...9...8...7... 6...5...4...3... 2...1!
[HORN BLARING] RYAN: I'VE ALWAYS WANTED TO DO IT.
IT'S JUST SOMETHING I'VE ALWAYS WANTED TO DO.
I WATCHED EVERYBODY ELSE DO IT FOR SO MANY YEARS, AND I FIGURED, "LET ME DO IT."
THEY HELD BACK MY CHEMO SO I COULD DO THIS.
THEY HELD IT BACK NOW FOR A WEEK, JUST SO I CAN DO THIS BIKE TOUR.
I HOPE I MAKE IT.
IF THOSE LITTLE THINGS DON'T BOTHER ME FOR THIS RACE, I CAN GET THROUGH IT.
PAIN OR WHATEVER, I'LL SUCK IT THROUGH.
'CAUSE TOMORROW, I'LL BE IN A CHAIR ALL DAY.
I'LL BE IN A CHAIR FOR 8 HOURS SLEEPING WITH CHEMO.
SO TOMORROW, I GET CHEMO, AND TODAY I'M GONNA BIKE RIDE!
GOOD MORNING, AND WELCOME TO BROOKLYN.
HA HA HA HA!
WE MADE IT.
SO, ONE TO CHECK OFF MY BUCKET LIST NOW.
HA HA!
I'M GOOD.
WHAT'S NEXT?
THE IRON WOMAN?
WOMAN: JUST--YOU START WITH LIKE A KNOT, ALL RIGHT?
YOU GO UNDERNEATH LIKE THAT, AND THEN YOU JUST PULL.
OH, I DID IT!
THERE YOU GO.
WOMAN: HI.
I'M DEBBIE LAFOND.
I'VE BEEN A NURSE PRACTITIONER HERE AT CHILDREN'S NATIONAL FOR 24 YEARS, WITH THE VAST MAJORITY OF MY PATIENTS HAVING BRAIN TUMORS.
AND ALTHOUGH OVER 50% OF CHILDREN WITH BRAIN TUMORS ARE CURED-- YOU HAVE LONG-TERM CONTROL OF THEIR DISEASE-- THAT LEAVES ALMOST 50% WHO ARE NOT CURED, AND YOU HAVE A LOT OF SYMPTOM DISTRESS.
THEY'RE JUST NOT COMFORTABLE.
THEY MAY HAVE PAIN OR NAUSEA OR VOMITING OR OTHER SYMPTOMS.
I THINK THAT SOMETIMES THERE'S A MISPERCEPTION ABOUT THE PALLIATIVE CARE TEAM... BECAUSE IT'S NOT ABOUT DEATH.
IT'S ABOUT LIVING LIFE TO THE FULLEST.
AND THE WORD "PALLIATE," IF YOU JUST GO BACK AND LOOK IN YOUR DICTIONARY, REALLY MEANS "TO EASE THE BURDEN."
SOME OF THOSE BURDENS MIGHT BE PHYSICAL BURDENS.
THERE MIGHT BE PAIN, OTHER SYMPTOMS.
SOME OF THEM MIGHT BE SPIRITUAL BURDENS.
SOME OF THEM MIGHT BE FINANCIAL BURDENS, YOU KNOW, 'CAUSE A PARENT CAN'T WORK.
GIRL: MY NAME IS ALENA SYDNOR.
WELL, I WAS FIRST DIAGNOSED WHEN I WAS IN 8th GRADE.
I DIDN'T EVEN KNOW WHAT A BRAIN TUMOR WAS AT THE TIME, AND THE ONLY THING I COULD THINK OF IS IT WAS JUST LIKE DEATH.
LOOKING BACK ON IT AND GOING THROUGH IT A SECOND TIME, IF I HAD THE MINDSET THAT I HAVE NOW, I STILL WOULD HAVE BEEN UPSET, SCARED DEFINITELY, BUT IT WOULD HAVE WENT A LOT--A LOT SMOOTHER.
BUT BACK THEN, THERE WAS A LOT OF TIMES I THOUGHT ABOUT KILLING MYSELF 'CAUSE I JUST DIDN'T KNOW, AND THEN IT WAS LIKE, "WELL, I'M GONNA DIE ANYWAY, SO WHY NOT JUST... TAKE MY OWN LIFE?"
I KIND OF ISOLATED MYSELF, SO I STARTED WRITING IN MY JOURNAL.
THAT'S WHEN I FOUND THIS LOVE FOR WRITING.
THERE'S SO MANY STORIES TO TELL.
HOW DOES THIS LOOK, MA?
WOMAN: IS THAT HAIR STICKING OUT, OR IS IT SOMETHING ELSE?
HAIR?
REALLY?
WELL, I DID GO TO SCHOOL FOR BROADCAST JOURNALISM AND FASHION MERCHANDISING.
AND TO FINALLY GRADUATE AND THEN, LITERALLY, I GOT AN INTERNSHIP, I WAS WORKING, AND...BOOM.
TO GO TO THE DOCTOR AND SAY, "HEY, YOUR TUMOR HAS COME BACK."
IT WAS KIND OF A LOT TO TAKE IN, BUT AT THE SAME TIME, I KIND OF SHOCKED MYSELF, BECAUSE I NEVER CRIED.
AND WHEN I GOT THE NEWS, I WAS JUST, LIKE, "OK. "WHAT'S THE NEXT THING WE HAVE TO DO?
WHEN DOES TREATMENT START?"
AFTER MY SECOND CYCLE OF CHEMO, I GOT AN MRI DONE, AND THE TUMOR HAS SHRUNK TREMENDOUSLY JUST OFF OF 2 CYCLES, AND I'M JUST, LIKE, SO EXCITED.
ME AND MY MOM WERE JUST LIKE HIGH-FIVIN' IN THE WAITIN' ROOM.
WE'RE JUST, LIKE, "YAY!"
WITH MY FAITH AND THE SUPPORT FROM MY FRIENDS AND FAMILY, I KNOW I'LL BE ABLE TO PULL THROUGH.
LAFOND: AS A PARENT, YOU'RE SUPPOSED TO FEED AND NURTURE AND PROTECT YOUR CHILD.
SHE WAS, LIKE, "OH!"
AND YOU COME HERE, OR ANY HOSPITAL, AND THINGS ARE OUT OF YOUR CONTROL.
WHEN YOU'VE GOT A CRITICAL CARE DOCTOR AND A NEUROLOGIST AND A PULMONOLOGIST AND THE CARDIOLOGIST, AND MOM AND DAD ARE HEARING INFORMATION FROM EVERYBODY, THEY COME AT THIS FROM A VERY MEDICAL, FACTUAL POINT OF VIEW.
AND I WOULD WANT THAT.
YOU KNOW, I WOULD WANT TO KNOW, "WHAT'S GOING ON HERE AND WHAT CAN WE DO ABOUT IT?"
BUT WHAT DOES THAT MEAN FOR YOU?
WHAT'S--WHAT'S IT GONNA BE LIKE IN REAL LIFE?
WE REALLY WANT TO FOCUS ON ENHANCING THOSE CHOICES SO THAT PEOPLE ARE WELL-INFORMED AND UNDERSTAND THAT THEY DO HAVE CHOICES.
SYDNOR: I HAD AN MRI THIS PAST MONDAY.
AND SO TODAY, I'M GOING TO DISCUSS WITH THE DOCTORS WHERE WE ARE.
HA HA HA!
WOMAN: HI, PRETTY.
DOCTOR: SO THAT'S A LOT OF-- LOT OF MOVEMENT THERE.
SYDNOR: MM-HMM.
AT THIS POINT, I THINK THE WAY THAT WE COULD BEST USE THOSE TOOLS WOULD BE TO DO THE SECOND-LOOK SURGERY NEXT TO REMOVE EVERYTHING THAT CAN BE SAFELY REMOVED.
YOU SEE THIS THING HERE... MM-HMM.
OK, THAT IS YOUR ANTERIOR CEREBRAL ARTERY.
OF COURSE, THE SURGEONS DON'T WANT TO DAMAGE IT IN ANY WAY.
THAT CAN CAUSE, IN THE WORST-CASE SCENARIO, A STROKE, AND THE FORNICES ARE REALLY IMPORTANT WHEN IT COMES TO MEMORY.
THANKFULLY, A LOT OF IT IS IMPROVED BECAUSE OF THE SHRINKAGE OF THE TUMOR, BUT WE DON'T WANT TO MESS THIS PART UP.
SYDNOR: OK. WE NEVER GO INTO SURGERY LIGHTLY.
I'D RATHER NOT WAIT.
HE CAN EVEN DO IT THE END OF NEXT WEEK.
[GASPS] SO WHAT HE WOULD LIKE TO DO IS TO MEET WITH YOU FOLKS TO JUST GO THROUGH, AGAIN, WHAT THE APPROACH WOULD BE, WHAT THE RISKS WOULD BE.
COME ALL THE WAY DOWN.
COME THIS WAY.
COME THIS WAY.
LOOK AT MY NOSE.
BIGGEST THING IN THE ROOM.
WHAT?
DOCTOR: THE AREA THAT CONTROLS MEMORY IS SORT OF WRAPPED A LITTLE BIT CLOSE TO THE TUMOR.
IF THE SURGEON CAN GET IN AND UNDER AND KEEP AWAY FROM THE MEMORY AREAS, THEN THE SURGERY SHOULD BE PRETTY SAFE.
IF THEY HAVE TO CUT THROUGH OR COME CLOSE TO THE MEMORY AREAS, IT MIGHT NOT BE WORTH THE SURGERY, BECAUSE I DON'T WANT TO TAKE THE MEMORY OUT.
SO THAT'S WHY IT'S GONNA REALLY BE IMPORTANT YOU UNDERSTAND WHAT THE RISKS ARE.
SYDNOR: LAST TIME, WE THOUGHT WE WERE DONE, SO I GUESS HOW DO WE ENSURE THAT, I GUESS, THIS IS IT?
FIRST DOCTOR: THAT'S AN EXCELLENT QUESTION.
UM, THERE ISN'T AN ANSWER.
IS YOUR HEART BEATING 100 MILES AN HOUR RIGHT NOW, OR IS IT SOMETHING THAT YOU CAN KIND OF CONSIDER WITH A COOL HEAD?
THE WHOLE MEMORY THING, YOU KNOW, DOES MAKE ME NERVOUS-- MM-HMM.
BUT POSITIVE THINKING, POSITIVE MIND.
[MOTHER CRYING, SPEAKING INDISTINCTLY] YOU CAN'T LOOK AT IT LIKE THAT.
WE WERE DOING GOOD, THOUGH, A WHILE.
MAN: YEAH, YOUR BRAIN'S DOING FINE.
[NERVOUS LAUGHTER] DOCTOR: FOR YOU, IT'S MORE OF A HEART ISSUE.
HA HA HA!
[NO AUDIO] BE GOOD.
DOCTOR: SCARY, FOR SURE, BUT IT'S ALSO KIND OF WHERE WE WANT IT TO BE.
THE GOAL OF THE CHEMOTHERAPY WAS TO SHOVE THIS THING DOWN TO THE POINT WHERE IT'S MORE MANAGEABLE AND TO THE POINT WHERE YOU WOULD RECOVER YOUR MEMORY AND WE COULD GET THOSE ARTERIES OUT OF DANGER.
[EQUIPMENT BEEPING] DOCTOR: SHE SPOKEN TO YOU AT ALL?
WOMAN: UM-MMM.
SHE HASN'T SPOKEN YET.
SHE'S RESPONDED AND FOLLOWED DIRECTIONS HEY, ALENA.
BUT SHE'S NOT SPOKEN.
WHAT'S YOUR NAME?
HEY, ALENA.
THIS IS...
SO...MARCH 14th.
APRIL 22nd.
SO IT'S BEEN ABOUT 6 WEEKS, RIGHT?
MM-HMM.
OK. DID YOU EAT BREAKFAST THIS MORNING?
I DON'T KNOW.
DOCTOR: DID YOU EAT DINNER LAST NIGHT?
I DON'T KNOW.
I'M PRETTY SURE I DID.
DID I EAT DINNER?
MM-HMM.
SYDNOR: WHAT I HAD, I CAN'T TELL YOU.
YOU CAN'T REMEMBER.
CAN YOU TAKE YOUR HAT OFF FOR ME?
YOU LOOK, UH... WOMAN: THEY'RE BACK.
WHAT'S THAT?
HER EYEBROWS ARE BACK.
YEAH.
YEAH, I KNOW.
YOU LOOK AWESOME.
IS YOUR MEMORY GETTING ANY BETTER?
I HEARD THAT IT WAS.
IS IT?
I DON'T REALLY KNOW.
WHAT DO YOU GUYS THINK?
A LITTLE BIT.
A LITTLE BIT, YEAH.
IT WILL TAKE SOME TIME.
THE FACT THAT IT'S GOTTEN BETTER AT ALL, I'M HOPEFUL THAT IT'LL CONTINUE.
I'M SORRY, SWEETHEART.
I DIDN'T MEAN TO MAKE YOU CRY.
[SNIFFS] I KNOW IT'S HARD.
YOU LOOK REALLY GOOD.
AND FROM A REALLY BIG...
FAIRLY DANGEROUS OPERATION, YOU JUST DID SUPREMELY WELL.
AND I KNOW THAT YOU HAVE SOME STUFF AHEAD OF YOU, TOO, RIGHT?
YOU GUYS ARE GONNA BE ADMITTED ON SUNDAY?
MM-HMM.
YEAH.
AND YOU'RE GONNA START SOME THERAPY.
I KNOW YOU'RE NOT LOOKING FORWARD TO THAT EITHER.
BUT YOU'RE DOING SO WELL.
OK?
WELL, YOUR MRI LOOKS REALLY GOOD.
THE RECESSION LOOKS GREAT.
YOU LOOK GREAT.
THE MEMORY ISSUES WE'RE HOPEFUL WILL IMPROVE, BUT ALL THINGS CONSIDERED...
I'M VERY SUPER HOPEFUL FOR YOU.
JUST ONE MORE, HOPEFULLY, FINAL STEP, AND TO BE DONE WITH EVERYTHING.
LIGHT AT THE END OF THE TUNNEL, SO TO SPEAK.
[SIREN] MOTHER: COMMON QUESTIONS ARE: "I GRADUATED FROM SCHOOL?"
"YES, YOU DID."
"WHAT HAVE I BEEN DOING ALL THIS TIME?"
AND I SAY, "ALENA, YOU HAVE BEEN FIGHTING THIS TUMOR THAT'S BEEN IN YOUR BRAIN."
AND SHE'S LIKE, "OH, OH.
MMM.
OK." SYDNOR: I JUST WANT TO GO ON WITH LIFE WITHOUT, LIKE, A TUMOR, BUT AT THE SAME TIME, YOU CAN'T REALLY.
IT'S A PART OF YOU.
YOU KIND OF HAVE TO TAKE THAT PART WITH YOU.
MOTHER: I DON'T KNOW.
IF IT GIVES HER A CHANCE OF THIS TUMOR FINALLY BEING ERADICATED, THEN I GUESS YOU COULD SAY IT WAS WORTH IT.
NOW, IS SHE GONNA BE PERMANENTLY DISABLED?
MEMORY-WISE, WILL SHE EVER BE ABLE TO WORK AND TAKE CARE OF HERSELF?
IS IT WORTH IT?
I DON'T KNOW.
I DON'T KNOW.
RYAN: I DIDN'T EVER WANT TO GO THROUGH CHEMO, SAID I WOULD NEVER DO IT AGAIN.
TIMES CHANGE.
THEY DID SURGERY, AND THEN THEY DECIDED, "WELL, WE HAVE THIS MILD CHEMOTHERAPY BECAUSE LISTEN, DIANE, IT'S NOT AS STRONG AS THE LAST ONE."
AND BECAUSE I WAS SO RELUCTANT TO DO CHEMO AGAIN, I ACTUALLY DID GET OTHER OPINIONS.
SO THAT WAS HARD.
AND THEN I LOOK AT MY KIDS.
AND I'M LIKE, "ALL RIGHT, I'LL TRY AGAIN.
LET'S GO FOR IT."
[SIZZLING] MY KIDS ASKED ME, UM... "HOW SICK ARE YOU, MOM?"
I'M LIKE, "WELL, YOU KNOW, I'M PRETTY SICK."
YOU KNOW THEY HAVE THOSE SPECIAL THINGS AT CHURCH AND YOU GET TO PRAY FOR SOMEBODY?
MY KIDS ARE ALWAYS LIKE, "MY MOM, MY MOM."
THE CHEMO THAT I HAD THE FIRST TIME WAS SO STRONG, THE ONE THING I DID EVERY DAY WAS GET DRESSED.
GO UP THE STAIRS, I WOULD BRUSH MY TEETH--TRY TO-- I WOULD GET DRESSED, BECAUSE THAT WOULD SHOW SOME NORMALCY.
[CAT CRYING] I DON'T WANT MY KIDS TO SEE ME SUFFER.
NO MATTER HOW I FEEL, I WILL ALWAYS BOUNCE BACK AND MAKE SURE I FEEL GOOD FOR THEM.
YOU CAN TRACK THE 7th GRADE.
I DON'T THINK YOU KNOW WHAT'S REALLY IMPORTANT UNTIL, YOU KNOW, YOU'RE FACED WITH BEING SICK.
HA HA HA!
MY KIDS ARE AWARE THAT EVERY DAY IS A SPECIAL DAY AND REALIZE HOW SICK I GET, THEY WANT TO SPEND THE TIME, TOO.
I LIVE MY DAY AS IF THIS IS THE LAST DAY I'M GONNA LIVE, AS IF I'M NOT GONNA BE HERE NEXT YEAR.
LIKE, LET'S MAKE THIS THE BEST TIME EVER SO THEY'LL ALWAYS BE REMEMBERED.
LIKE RUNNING WITH MY SON.
I CAN RUN FOR MILES IF HE RUNS WITH ME.
AND THEN I STILL HAVE MORE IN ME TO KEEP GOING.
[CRICKETS CHIRPING] THEY RESTARTED ME BACK ON CHEMO, AND I'M TOLERATING IT FAIRLY WELL.
SO, YOU KNOW, IF EVERYTHING GOES WELL, I WILL BE ABLE TO GO BACK TO WORK.
I LOVE MY JOB.
SO I'M REALLY, REALLY HAPPY.
THERE'S A LIGHT AT THE END OF THIS TUNNEL THAT AFTER EVERYTHING THAT'S HAPPENED THE LAST SEVERAL MONTHS, THERE'S SOME LIGHT.
THERE'S SOMETHING GOOD THAT'S GONNA HAPPEN.
IT'S DIFFERENT COMING BACK TO WORK FROM ME BEING SICK AND ME GETTING CHEMO ALL THE TIME.
GOOD MORNING.
HAVE A GOOD DAY.
THE FIRST WEEK IS NAUSEOUS.
SECOND WEEK, I GET REALLY BAD MOUTH SORES, AND I DON'T EAT.
AND THE NEUROPATHIES-- IT'S PRETTY BAD, BUT YOU KNOW, I'M ABLE TO MANAGE MY SIDE EFFECTS.
OHH!
SHE PASSED.
I'M ABLE TO HELP THESE PEOPLE 'CAUSE I'VE BEEN THROUGH WHAT THEY'VE BEEN THROUGH.
I'M A BETTER NURSE BECAUSE I'VE BEEN THROUGH IT.
I'M DOING WHAT I WANT TO DO AND WHAT I'M ABLE TO DO AT THIS POINT.
I THINK THAT'S THE BIG THING.
AND IF I DIE, OH, MY GOD, THERE'S NO MORE PAIN.
COULD YOU IMAGINE?
I'M AT A POINT IN MY LIFE WHERE I CAN ACCEPT MY FATE OR I CAN ACCEPT WHAT'S GOING ON.
FIRST OF ALL, I'M GONNA FIGHT FOR MY OWN LIFE, BUT I'M PERFECTLY FINE TO THINK THAT MAYBE IF I'M NOT HERE THIS TIME NEXT YEAR, LOOK WHAT I LEFT BEHIND.
I'M REALISTIC.
LIFE COULD BE SO MUCH WORSE FOR ME.
I'M 50.
I MADE IT TO 50 YEARS OLD.
I'M GOOD.
I'M GOOD.
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