Is it important to cut the cord and step away from the friends we made during “cancer time?”

So many of us connected with our doctors and nurses and other caregivers as we marched through cancer world.  We saw  some of them on a daily basis.  Some were other patients who walked into the chemo room with us because they were on the same treatment schedule.  Some were a part of cancer group sessions where families shared their fears and their feelings.

But once the cancer was treated, or in some cases, took a life, and we moved out of that circle, did we take steps to stay in touch?  Was there a level of comfort there, that was just too hard to separate from? We felt protected and taken care of, in some ways while our loved ones were getting great care.  It was a new way of life that became the new normal. 

Now that we’re out of it and the normal has changed again, where do those “cancer” folks go?   Where do they fit?

I’ve held on to some of them.  They are still important to me in so many ways.  What they did for Leroy and for me will stay a part of me forever.  My friendship circle expanded to make room for these special people.

The “cord” gets stronger every day.

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I’ve just discovered my computer is really a “cancer-keyboard.”

Take a look at the keys. 

ESCAPE…wouldn’t we all like to hit that key and escape from cancer world.

CONTROL…we fight NOT to lose it as we stumble through this fight.

DELETE….hit that key and all those horrible signs of cancer evaporate instantly.

HOME…back to normal…back to where we feel safe and sound.

PAUSE….to collect ourselves after a long day at the cancer center.

END…too many ways to interpert this one.

SAVE…life after life after life.

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Chemo brain. 

It’s an awful part of living with cancer.  It’s not enough that chemo therapy is so tough on the body. Sure, it kills cancer cells, but while it’s hunting down the bad guys, it’s steam rolling over the good guys too.  I’ll never forget Leroy’s blog, “My doctors are trying to kill me.”  He talked about wondering what would kill him first, the cancer or the chemo. 

Once you get past that part of it, then you’re faced with the side effects of the drugs.  I have a friend right now, who is battling some terrible side effects of her chemo.  Her cancer is in check.  She’s grateful the chemo is working, but the headaches, the diarrhea, the constipation, the nausea, oh how that weighs heavily on the quality of her life.  And then there’s the chemo brain. 

She says she feels foggy all the time.  Clear thoughts are unreachable.  Some days complete sentences float out there, in her minds’ eye but that’s where they get stuck.   She gets depressed and frustrated and then she starts to wonder, “Is it all worth it?”

That’s the worst part of chemo brain.  It’s another low-down trick cancer plays on its’ victims.  It plants the “doubt” seed and then steps back and watches it grow. 

We’ve talked about quality of life vs. quanity of life many times.  I’m afraid my friend will weaken in her resolve to keep up the fight.  Her chemo brain could turn off that drive to live.

Cancer and it’s side-kicks…more than any one of us can handle.

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I drove up to the Cancer Center this morning and for some strange reason, the traffic was light. I usually figure on at least an hour because as many of you know, traffic in the D.C. area is horrible. One little hiccup on the Washington Beltway and it’s a parking lot.  Head up 95 North and you’re the filling in an 18-wheeler sandwich. 

But not today….until I got to “cancer central.”  NO room in the parking lot I usually drive into so I went around the corner to the outpatient lot.  Guess what? Top level parking only, and it was filling up fast.  I hated to see it. 

There’s just too much cancer in this world. 

Some who have been in this fight for months, years…Others who are just discovering the beast is living and spreading inside them.  It doesn’t matter where in the fight you are…there are just too many living in this world.

We walk to end cancer.  We donate to end cancer.  We do what ever we can to end cancer and yet the parking lots are full.

Some day…some day this beast will be beaten back.  I truly believe it.

Some day, we won’t have to worry about finding a place to park at any cancer center.

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I thank you all for your comments from the “Remembering” message.

I came to realize a long time ago, as Leroy and I were just beginning our unchartered course through Cancer World, and as he began to write every day, on the “My Cancer” blog, that this was going to be a life changing event.  Not just because Leroy’s prognosis was so awful but because we really didn’t know where this journey would take us.  How it would mess with our life together and how we would handle it as individuals. 

We had no choice but to take it one day at a time.  Cancer gives you no other choice.  One day life was close to feeling normal and the next day it wasn’t.  So, instead of trying to plan around it, we tried to squeeze the better parts of us into the unsettling parts of our new reality.

That’s what Leroy’s strength was in fighting the disease and I gained my strength from following his lead.  I really think he got stronger as his cancer metastized.   He had found a new family, in all of you, who appreciated his honesty.  Your connection startled him at first, but he eventually grew to understand his words were your words too.  He had the gift of putting into words what so many cancer patients felt.

I’ve tried to do the same from the caregivers place. 

This community has held my hand during some difficult times.  Even though Leroy’s struggle has ended, I still bump heads with fallout from the loss.  I know I’m not  the only one. 

So, we’re still here to help each other over what ever pops up down the road. 

It’s just what we do here.

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Johns Hopkins honored the memory of those lost to cancer over the past year last night with their second annual “Night of Remembrance.”  It’s a very special evening where friends and family members are invited to gather, sharing their sorrow, but also gaining strength from each other.

I was asked to be a guest speaker.  I’d like to share my words with all of you on this day after an emotional night for the more than 400 who gathered to “remember.”

EVERY TIME I WALK THROUGH THIS LOBBY, I REMEMBER.

I RMEMBER THE FIRST TIME LEROY AND I DROVE INTO THE PARKING LOT, HERE AT WEINBERG.  THERE WERE SO MANY CARS, WE FOUND A SPOT ON THE THIRD LEVEL AND FROM SOME CRAZY, SUPERSTITIOUS REASON, THAT’S WHERE WE WOULD PARK FOR EVERY APPOINTMENT HE EVER HAD HERE.

THAT’S WHERE I STILL PARK, TO THIS DAY.

IT’S BEEN 32 MONTHS AND 19 DAYS SINCE THIS NASTY BEAST WE CALL CANCER, TOOK HIS LIFE.

HE’S IN MY HEAD AND IN MY HEART EVERY, SINGLE, DAY.

LEROY SIEVERS WAS AN INDEPENTENT MAN. HE WAS A BIG MAN, IN MANY WAYS, HE USED EVERY BIT OF HIS 6-FOOT 5-INCH FRAME TO MAKE HIS POINT.

LEROY WAS A FIRST CLASS JOURNALIST.  HE TRAVELED THE WORLD STOPPING AT JUST ABOUT EVERY HELL-HOLE YOU CAN IMAGINE TO COVER WAR…15 OF THEM, AS A MATTER OF FACT…FROM CENTRAL AMERICA, TO THE BALKANS, RWANDA, THE INVASION OF IRAQ AND BEYOND.  OVER 30 YEARS IN THE TELEVISION NEWS BUSINESS.

HE WAS GOOD AT WHAT HE DID TOO.

AS EXECUTIVE PRODUCER OF THE ABC NEWS PROGRAMS, “NIGHTLINE” HE COLLECTED A SLEW OF AWARDS…COLUMBIA-DUPONT SILVER BATONS, PEABODYS, AND A DOZEN NATIONAL NEWS EMMYS.  HE HAD A POSSE OF PRODUCERS, CORRESPONDENTS, EDITORS AND CAMERA CREWS WHO WOULD FOLLOW HIM ANYWHERE, JUST KNOWING IT WAS LEROY WHO HAD THEIR BACK.

THOSE LIFE EXPERIENCES WOULD PREPARE HIM FOR WHAT WAS TO COME.  FINDING HIS OWN SENSE OF PEACE AND MEANING, AND FACING HIS OWN MORTALITY.

IN A STRANGE SORT OF WAY, AND I DIDN’T REALIZE IT AT THE TIME, I WAS “IN-TRAINING” TOO…TO BECOME A CAREGIVER.

THERE WASN’T A STORY HE TRAVELED TO WHERE I HADN’T PACKED GATORADE, GUM ALMONDS, HANDI-WIPES AND LET’S NOT FORGET THE CHOCOLATE…I LEARNED EARY ONE, YOU CAN’T COVER CONFLICT WITHOUT CHOCOLATE.

ALL OF THOSE THINGS WENT INTO HIS TRAVEL GEAR ALONG WITH LITTLE PIECES OF PAPER STUCK INTO HIS SOCKS. LITTLE NOTES THAT SAID, “COME HOME SOON,”…”BE SAFE”…OR “I LOVE YOU.”

A CARE-GIVER IN TRAINING.

OUR FIRST STEP INTO CANCER WORLD CAME IN 2001.  IT WAS A “ROUTINE” COLONOSCOPY, THAT WASN’T.

SURGERY MEANT A LENGTHY RECOVERY AT HOME.

LEROY WAS NOT A “PATIENT” PATIENT.

BUT LIFE, EVENTUALLY, RETURNED TO NORMAL.

CANCER..THE WORD, THE THOUGHT, THE DISEASE, EXCEPT FOR THE CHECK-UPS, REALLY DIDN’T HAVE A PLACE IN OUR LIVES.

WE WERE FINISHED WITH IT.

IT WASN’T FINISHED WITH US.

WHO KNOWS WHERE CANCER GOES WHEN IT DISAPPEARS OFF THE SCANS. IT CAME OUT OF HIDING IN 2005, AS AN EXPLOSION OF DISEASE INSIDE LEROY.

HE WAS IN FOR THE FIGHT OF HIS LIFE.  HIS FINAL WAR. I WAS NO LONGER A CAREGIVER IN TRAINING..

THIS WAS THE REAL DEAL.

ALL OF US WHO HAVE LIVED OURLIVES AS CAREGIVERS WEAR THE HAT DIFFERENTLY BECAUSE OUR SITUATIONS ARE ALL DIFFERENT.

BUT THERE ARE A FEW CONSTANTS.

WE ARE THE ADVOCATES.  FIERCE, STRONG, UNWAVERING ADVOCATES.  IN CANCER WORLD, WHEN THE DISEASE IS ON THE MARCH, IT IS THE CAREGIVER WHO NEEDS TO STAND UP AND ADVOCATE FOR THEIR LOVED-ONE.

BUT WE NEED SUPPORT TOO.  NO ONE HAD BETTER FRIENDS IN THIS FIGHT, THAN LEROY.  THEY KEPT HIM IN THE GAME…THE KEPT HIM ENGAGED IN LIFE.  I WAS IN AWE OF THEIR POWER OVER THIS DISEASE.

I LEARNED EARLY ON, IN OUR BATTLE, I COULD NOT BE THE ONLY CAREGIVER.  FRIENDS AND FAMILY NOT ONLY HELPED LEROY, BUT THEIR SUPPORT LIFTED ME UP, MORE TIMES THAN I COULD COUNT.

AND REMEMBER, CAREGIVERS ARE THE “HEART” IN THIS FIGHT.

IT IS OUR COMPASSION AND OUR CARING THAT MAKES EACH DAY WORTH FIGHTING FOR.  WE TRY EVERY DAY TO FIND A LITTLE BIT OF “POSITIVE”..EVEN ON THE WORST DAYS.

WHEN MY HEART WAS BREAKING, I WOULD RETREAT SOMEWHERE PRIVATELY, TO CRY AND ACHE ALONE.  I WANTED LEROY TO THINK ABOUT LIVING…MY CAREGIVING WAS “LIFE-GIVING” SO I TRIED NOT TO SHOW MY HEART BREAK.

MANY NIGHTS, I WOULD STNAD BY THE DOOR AND JUST LISTEN TO HIM BREATHE. I KNEW I WAS GOING TO LOSE HIM. I FELT IF I COULD JUST RECORD THAT SOUND IN MY HEAD, I WOULD BE ABLE TO PALY IT BACK FOR MY HEART ON THE DAYS I NEEDED IT MOST.

CAREGIVING WAS HARD WORK.

IT TOOK THE “ME” OUR OF ME…

IT CREATED A DIFFERENT “ME”..

A CHANGED FOREVER “ME”…

BUT YOU KNOW, AS I THINK ABOUT IT NOW,32 MONTHS AND 19 DAYS LATER, AND IT’S TAKEN ME THIS LONG TO REALIZE IT, I’M A STRONGER ME.

I’M BETTING ALL OF US WHO HAVE COME THROUGH THIS HELL, ARE STRONGER TOO.

CAREGIVING GAVE US A NEW SET OF TOOLS TO WORK WITH IN THIS LIFE.

NONE OF US WOULD EVER HAVE CHOSEN THIS PATH..WEMISS OURLOVED ONES BEYOND WORDS, THAT’S WHY WE’RE HERE TONIGHT…TO REMEMBER.

AND THAT’S WHY IT’S IMPORTANT TO PARK ON THE SAME LEVEL IN THE LOT BELOW.

IT’S IMPORTANT TO REMEMBER ALL THE WALKS THROUGH THIS LOBBY.

AND , IT’S IMPORTANT TO “REMEMBER THEM” AND REMEMBER OUR ROLE IN THE FINAL PHASE OF THEIR LIVES…

FROM ONE CAREGIVER TO ANOTHER…I SALUTE YOU ON A JOB WELL DONE.

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One of the first things we did when Leroy and I moved to this home was to plant a special Dogwood tree in the front of the property.  I gues it was our way of making the place our own.  We’d remodeled the house, basically to fit Leroy’s 6-foot 5-inch size and the little Dogwood was the finishing touch.

Each Spring, the little tree would blossom and slowly grow.  It fought for every ray of sunshine because the big oaks and poplars towered above it and grabbed most of the light….still, the little Dogwood lived on. 

After Leroy passed away, I took extra care of that tree because it was a living reminder of “us.”

Last Summer, a microburst blew through here and brought down tree limbs and fences and caused a lot of damage.  When I went outside to check on the yard, I found the little tree was buried under huge limbs.  It was bent over and I could not clear the debris, it was just too heavy to move.  Luckily  friends drove by and saw that I was very upset over the state of my little Dogwood and with electric saws, they freed the little tree. 

This spring, I gave it extra fertilizer and waited for the blossoms…but there were none. 

I’ve been so sad about losing that tree.  Another piece of “us” was gone.  I finally asked my landscaper to replace the tree with a new Dogwood.  The replacement tree would be better than looking at the bare branches.  That was just about to happen, when my landscaper noticed the little Dogwood has new leaves at the base of the trunk. Today when we took a closer look, new leaves are sprouting all over the bottom of the tree…it lives!

So now that little tree will get a special fence for extra protection.  It will get special food to make it strong and healthy again.

It looks like that little Dogwood has a lot of the same quallities Leroy had.

I can’t wait to see that first blossom.

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Every once in a while, a movie gets made about someone who dies and they come back as an angel to earn their wings, or they never really get to heaven because they still have things to do here on earth. 

There was “Heaven Can Wait” or “Ghost.” You probably have your own favorite that comes to mind.

So today, I got one of those grocery coupon handouts in the mail.  It was filled with ads for everything from tomato soup to razor blades.

Stay with me, because I promise this will all come together!!!

I think most of you knew that Leroy had a sweet tooth.  He was a chocolate lover from ‘way back.  Pumpkin pie was a favorite, so was pecan pie.  But, he LOVED Oreo cookies.

As I turned the pages of this coupon handout, there it was…”Introducing OREO Ultimate Icing.” A dollar off coupon when you buy a squeeze bottle of “A delicious new icing made with OREO cookie pieces.”   

I laughed out loud.  THIS IS IT….if there was anything that would bring him back, OREO Ultimate Icing would be the ticket!!

As they say on “The Price is Right” game show….”Come on down.”

The squeeze bottle will be waiting in the kitchen for you, Leroy.

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It is the room filled with sad eyes.  I’d forgotten how powerful it is….what a powerful grip those eyes have on me.

I was in the infusion room yesterday at the cancer center at Hopkins.  Sitting there, visiting a friend who was waiting to get his blood results before a chemo treatment. 

I’d gotten there, early, and at the time the waiting room was full.  The nurses were busy trying to find empty loungers and day beds so they could keep the traffic flowing.  One pod was full.  The chemo pumps were clicking away and if I followed the tubing to the arms that were attached to the pumps and glanced up, I was locked onto those sad eyes.

No matter what stage of chemo, no matter how healthy or sick, a cancer patients eyes speak volumes. 

Staying positive, finding hope in this room is one hard task.  This is the center piece of cancers’ demise..the chemo room.  This is where you go to kill the beast that is trying to kill you.

The nurses who do their jobs so well, try to keep the mood elevated, but sometimes it’s just not possible.  Chemo and cancer is a hard combo to overcome.

The eyes in the room say it all. 

The sparkle, the spunk, the twinkling must be down the hall.

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This passed my desk today and I thought about how it fits in cancer world.

“I’ve got dreams in hidden places and extra smiles for when I’m blue.”

Living with cancer has a way of taking away our dreams.  The future vanishes into the now and we forget about our dreams for tomorrow.  We get so focused on today because we have this challenge to make the most of today for fear there will not be a tomorrow. 

That’s not the way it should be.  We all deserve a future.  Everyone should have permission to think about their dreams and see them come true.

Future’s come in all sizes.  If you live in cancer world, no one has to tell you that.  So the answer is to dream big, no matter what.

Here’s smiling at you!!

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