His body language screamed "I'm tired."

His eyes were swollen and red and he looked sad.

These were all signs of a caregiver who was going through a rough time.

In his arms he clutched a stack of books and a few notebooks too.  He held them tightly so they wouldn't drop on the elevator floor.

It was just the two of us so I said, "Looks like you'll be doing a lot of reading today?"  He glanced my way and said, "OH, I get so tired just sitting by the bed and it's so hard to read just one book, so I have a variety with me today."  "I'm not sure I can even read today."

I told him that I understood exactly what he was saying.  The days are long at the cancer center, especially when you're sitting by the bed and can't really do much to help, but I told him it was important to be there, to show support and love.

He shook his head in agreement, rearranging the books in his arms as he shuffled out of the elevator.  He turned around and looked at me, smiled and said "I hope your day will be better than mine." And he was gone.

A stack of books and a tired man facing another day of care giving in cancer world.

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It's like winning the lottery isn't it?

You've heard the words, "YOU have cancer."  Your world is shattered.  Everything you thought was normal, steady, even routine, changes in an instant.  None of those things apply to your life any more.

You're a cancer patient now.  You live in cancer world.  Words like chemotherapy, radiation, scans, clinical trials: they all become a part of your new vocabulary.

You have a care giver now, some one who used to be your partner, your spouse.

It's a different life.

So, you go through treatment and you're lucky enough to walk away from all of it with the letters, N-E-D written on your medical chart.  No more cancer.  No evidence of disease.  Your medical team says, "See you in 3 months," and then it's maybe 6 months, and if all continues to go well, no check-up for a year.  It's all good.

It's like winning the lottery isn't it?  So, how many times have you heard people say, if they win the lottery they would change their lives?  They would appreciate life more and help people who needed a hand?  They would give some of their winnings to needy causes instead of buying cars and houses and gaudy jewelry.  If the lottery changed them, it would change them in a good way.

Now, put those same ideas into the cancer box.  Surviving cancer is a huge accomplishment.  You are a changed person on so many levels.  You appreciate life more and how many times during treatment did you whisper to yourself in the dark of night, "If I get through this, I'll be a better person?"  "I'll help other cancer patients who aren't as lucky.  I'll reach out and do what I can to make their lives a little easier?"

It is like winning the lottery, isn't it?  Maybe even more important because the lessons learned help others.

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I love it when some one I know has a birthday and is living in cancer world.  Birthdays are the best...

They carry an extra helping of "Happy" when the cancer is far away and no where to be found and the biggest decision to be made is where to go to dinner to celebrate the birthday.

That's the scenario for a friend who has been successfully battling her cancer for a long time now.  She's been through so many conventional treatments and then her doctor made the bold move to place her in various clinical trials.  These trials have given her new life.

She has gone through genetic testing and she meets the qualifications needed for these specific trials.  They are matched to her cancer and  they have taken a big bite out of the beast.  She's on what she calls a "friendly" chemo at the moment while she and her medical team look at new trials that give her a new jolt of hope.

It's a different life than what she expected; no one thinks they'll be faced with making decisions on clinical trials, but she's adjusted her thinking and lives each day with hope and a great attitude.

And she has a birthday to celebrate and a dinner to mark the occasion...Happy Birthday Suzanne....and many more!

 

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We miss them around the Holidays.  We miss them on our very own special calendar dates.  Anniversaries and Birthdays don't feel the same without them being here, do they?

We even remember them and miss them on particular dates that marked the progression of their disease.  There were surgeries, the first day of chemotherapy or maybe the day when your doctor said there wasn't any more treatment available.

All important markers of time, but there I was, sitting on the couch last night watching the last episode of "24: Live Another Day' and all I could think of was Leroy really should be here!  He LOVED the show and we were loyal viewers.  He would have loved this season too.  Some of the same great characters, good writing and the usual over the top, graphic violence and crazy story line, but so much fun to watch.

It was appointment TV for us.  And there I was, watching it alone and missing him just like I do on those really important dates.

I guess it's the sharing I miss.  We didn't always see things the same, but we were a united front with this kind of stuff.

The healing part of this life experience, includes the 'missing' part: It's one of the hardest parts too.

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Remembering "them" is so important.  Al reflected on that, recalling a great line by Mitch Albon.

One of my favorites of his is "Have you ever lost someone you love and wanted one more conversation, one more chance to make up for the time when you thought they would be here forever?" "If so, then you know you can go your whole life collecting days, and none will outweigh the one you wish you had back."

No matter how many times we heard the word terminal or metastatic or stage 4, I always hoped and thought Leroy would beat the beast.  He was the strongest, healthiest guy around.  I don't think I can remember more than a couple of flu's or colds that stopped him for a day or two.  He got so sick down in Nicaragua after eating in a restaurant.  He was down there covering a conflict and when the meal was over, he and his crew walked through the kitchen to leave and there was an open sewer line in the middle of the floor. He knew bad things would happen and they did.  I always packed powdered Gatorade in his bag and he used every packet and still he suffered from such bad food poisoning.  When he got home, ten pounds lighter, the doctor prescribed strong antibiotics and some serious bed rest.  That was probably the sickest he'd ever been before the cancer.

He came in contact with so much bad stuff...his international certificate of vaccination card had three added inserts, plus a cholera vaccine certificate.  Unfortunately, there was no vaccine for cancer.

And as the disease progressed, the days were filled with more things to do.  The pressure to make sure he was comfortable, and as pain free as possible replaced the conversations and card games.  We didn't talk as much and the special words of feelings were lost in the busy time.

24 days after he died I wrote this on the blog: " It was a good old '60's love song.  The kind that took you back to those last perfect days of summer.  When it was over the DJ on the radio said, "It's important to say it in the living time.  So there are no regrets."

The "IT" is "I love you."  Say it in the 'living time.'

How many of us get so wrapped up in the chemo sessions and doctors' appointments and care-giving, that the 'I love you's get lost in the demands of the day?'

What I wouldn't do to say that once more to Leroy- in the 'living time.'

I meant it then and I still mean it now.

One more day...

 

 

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Some might call it the final good-bye but it's far from that.  It's a physical separation, so I guess it's a form of closure, but I'm not sure we really ever say "good-bye."

This is a simple message for you Al, because I know how your heart is trembling, anticipating what tomorrow will bring.  It will bring tears and smiles and every other emotion we humans are lucky enough to hold dear.

It will be a difficult, exhausting day too.

Your family will be by your side and you will have the "lifting" you need to get through the day.

Take it from someone who traveled more than six thousand miles, through TSA check points and many airplanes, to make sure Leroy was at rest in the perfect place of his choosing, this is a day that will mark your life as well as Linda's.

So make it about the two of you.  Before you leave the house, put something in your pocket that was special to the both of you.  Bring her a favorite flower that will keep her company after you leave the family plot.  Most of all, and this helped me a lot, talk to her, Al.  Before the family gathers to say their good-byes, excuse yourself and take some quiet time alone with your loved one.  Everyone will understand and my gosh, after spending a life time together, you certainly have a lot say.

No doubt in my mind, she'll be listening. And that's when you slip your hand inside your pocket and squeeze that special treasure you've brought from home.

Let the stories be told and let the tears flow and from one of those stories laughter will break through and before you know it, smiles and good memories will begin the real healing.

Prayers and strength to you my friend.

 

 

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How do we heal?

If we fall and scrape our knee, our body goes to work and before we know it, we have a scab and the healing process runs its course.

It's not so easy with cancer.  Treatment is far from the Band-Aid and Neosporin in the medicine cabinet.

Surgery, Chemotherapy, Radiation, Clinical Trials; there are so many forms of cancer treatment and none of them are easy.  If the treatment is matched well to the cancer, good things happen.  The cancer dies.  It retreats to places unknown, sometimes to return and cause problems another day and sometimes not.

How does our mind play a role in healing from cancer?

Can we persuade the cancer to turn and run just by thinking it away?  The power of the mind has been researched for years and some experts believe strongly that the mind has the power to override cancer's considerable presence.

In this house, we used the "think positive" approach and most of the time it made for a better day, but facing a metastatic diagnosis tends to creep into the minds crawl spaces when you least expect it.  It's hard to hold on to that healing feeling when scans or test results reveal the disease marching forward and there isn't a powerful thought that can stop it.

Maybe the positive healing idea is meant to lift us until reality hits home.

When hope shifts from the hope of healing to the hope of a pain-free, peaceful death....and then a different power of healing takes over for those left behind.

 

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It came like the wind: in fact, it was the wind, swift, violent and fierce.  The weather folks will find a name for it in the next few days, but here on my street we just call it one of the scariest nights on record.

My beautiful trees withstood most of it.  They dug deep into the soil and held on as this sudden burst of energy exploded around them  It was over quickly but such damage.  Under a 40 foot tree limb my mangled AC unit quit on impact.  I managed to clear the debris only to find a smashed and twisted machine only two days shy of its first birthday!!!  It was such a good air conditioner too!!!

There's branches and leaves and sticks and stuff everywhere.  Power was out, then it was on, then it was out and for most of the day it's been on.   I appreciate the lights, but I can't wait for my new AC unit to arrive.   I will really appreciate the cooler, less humid air.

This whole experience takes me back to Hurricane Andrew.  Leroy and I lived that storm, covered that storm and had no power, much less air conditioning for over two weeks.  We ate a lot of tuna, drank a lot of water from an ice chest that kept it cool after the ice melted and we took many cold showers that felt great in the hot Miami days that followed that mess.

So tonight...it's tuna on the menu along with memories of a different storm.  We managed without the AC and I will too.  There's a neighbor down the tree who doesn't have a house any more because one of his trees just couldn't hold on and tumbled, only to land squarely across his roof.  The house is in shambles and he's in a hotel.

The storm clouds are gathering again tonight and I hear the rumble of thunder.

Time to go outside and talk to the trees!

 

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I've said it over and over again, I'm in awe of nurses who make the choice to live in cancer world.

I can not figure out how they are able to work day after day with cancer patients.  My admiration for these nurses is beyond words.

I feel the same way about doctors who choose cancer as their calling too.

There will be a new crop of doctor wannabe's landing on the doorsteps of teaching hospitals around the country very soon.  Those who eventually follow the path to the oncology floors will be special people.

Think about all the things they will be faced with day after day.

There is hope: How will they learn to keep hope alive for every patient they treat?  There will be struggle: They will have to learn the fine art of balancing the  cancer struggle with the cancer outcome.  They must learn that in cancer world, a doctor isn't just about medicine. A cancer doctor is friend, family and care provider.  They must find their smile.  A cancer doctor can't be serious all the time.  The disease is serious enough, so the cancer doctor must have a smile to light the treatment road.

Probably the most important piece of a cancer doctor is honesty.  There must be an open, honest dialogue between patient, caregiver and the cancer doctor.  Truth of diagnosis, truth about treatment, and truth about prognosis.

Hope, Balancing the struggle, Being a friend, Smile, Honesty.....These could be tougher to learn than the science, but in my book, NO BODY graduates with out them.

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Holidays change when death dates overlap them on the calendar.

I have a good friend who is not looking forward to the 4th of July holiday this year because it is the second anniversary of her husband's death from kidney cancer.

It's safe to say, they probably celebrated the Fourth the same way many of us did, before cancer: a backyard gathering, maybe an American flag flying in the yard, maybe a baseball game, but that certainly isn't what comes to mind now.

Cancer took that holiday away.  It took many other days on the calendar away too, but on a day when a lot of folks celebrate together, it's tough to be a part of the crowd when the heart hurts.

So, with that said, I wish us all a safe and Happy Fourth of July.

I'm also thinking of those who can't quite get into the celebratory mood for good reasons.  To all of you, I wish a peaceful weekend of remembering the days when the 4th was a happier time.

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