We've all talked about how special some of our experiences have been with certain nurses as we made our way through cancer world.  As much as we'd like to say ALL of our nurses were special, SOME really made an impact on our lives during the battle and some have even stayed in our lives long after the cancer fight was over.  Those are the really special ones.

The same goes for our doctors.  In our case, Leroy and I had a pretty big team of docs who jockeyed in and out of our lives. A very few were constant day to day connections.   I mean it's been close to 8 years since Leroy died from colon cancer.  So I know a special doctor when I see one.  He has helped friends of mine who have suffered with cancer.  He has been my constant cancer consultant, when I have questions about the disease. When I hear about something new on the treatment horizon, I always ask him if this would have given Leroy, more quality of life, more years.  In the past, he would usually nod "no" and we'd move on from there, but now with Immunotherapy and his type of colon cancer being one with multiple mutations, he actually said "maybe" which allowed me many follow up questions.  We were lucky to have found such a truly caring physician and I'm so very lucky to be able to call him a friend now.

Such is the case with a very talented and dedicated Pancreas Cancer physician and researcher.  She got into the business of Pancreas cancer back in 1986 when her uncle was diagnosed with the disease.  He was basically sent home with pain meds because there was nothing for him.  Treatment was just not available then.  He died in three months and she told me
"that was just not acceptable."  So she went to work on this brutal form of cancer.  She's one of the reasons there has been progress and many discoveries made on this type of cancer.  She's front and center in the clinical trials world and pancreas cancer is in big trouble thanks to her lab.

She told me the other day, her goal is to "get something I've developed into standard of care for Pancreatic cancer patients. That's the ultimate goal. I will feel like I have contributed to patients and to science."

She's another " something special" one.

There are plenty of "OK" docs out there. Some "special" ones fill a smaller list, but then there are those who have that "something special."

Don't settle for anything less.  They change the world.

 

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Consider this a sharing moment.

There are many of us out there who were care givers to our metastatic cancer loved ones.  Mine happened to be my husband who through out his entire adult life was an awesome television news producer.  I tell you this because that meant his job put him in spots where he needed to be in control and ready for just about anything as he produced stories all over the world.  He was really good at taking control and he did this around the house too.  He hired well.

I never paid much attention to this because he handled this stuff: but when his cancer started to take him out of the day to day decisions because the cancer decisions were more important, I found myself sliding into a new role.

He saw this change too and began, what I look back now and think was my tutorial on hiring and caring for things around the house, or with the cars or just some basic life decisions too.  He was subtle because I too, am a television news producer, with all of those same traits,  so he knew better than to push too hard.  You know what, it worked.  At least some of it did because just today when a workman came to do some repairs at the house, I remembered back to a Leroy teaching moment.

He would get a chuckle out of today's blog.  He'd never think I would admit to this, but I am.  I was paying attention!

 

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There are so many phases of the cancer journey.

"You have cancer." The minute you hear those words, the world changes.  Phase One: processing that sentence.  Do we get it?  Do we understand what that means?  We think we do, but once you're inside cancer world, it becomes clear very quickly, we didn't get it.  We didn't have a clue what that meant.

Then we move into the scans, the biopsies, the blood work, and that leads to the plan and then to the treatment phase.  By now we have a medical "team" who we hope is communicating with one another so the plan is a successful one.  Along the way we've picked up a whole new vocabulary of words we never knew existed but if we're going to keep up with the plan, our new words are a must have.  Do we get it yet?  We think we do, but we're beginning to wonder if we'll ever get a real grip on this ordeal.  I guess that's Phase Two.

The treatment plan is hard.  Some times the side effects are rougher than the treatment.  Some times there's surgeries to deal with or procedures we could never imagine to keep our loved ones alive.  They go through so much just to live another day.  We stand by with our love and our support and we think we're advocating for all the right moves, but there are days and many nights when we wonder to ourselves, "Do we get it?" Phase Three is a hard phase.

Through it all, we try our best: NO, we try much harder than our best, but we can't change the final phase.  Phase Four is unimaginable.  The loss is so great.  We followed the plan, we had faith in our "team" and they worked so hard not to get to Phase Four.  We appreciate their effort beyond words but it still ended badly.  Phase Four is unimaginable.

Did we ever get it?  I think so.

 

 

 

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I remember it so well.  The phone would ring and she would talk to Leroy for a few minutes just to see how he was feeling.  She never ended a call without saying those words, "Just live one more day."

Her message, what she was trying to say was, "Those guys in the lab are so close to coming up with something that will extend your life.  If it's not today, it could very well be tomorrow.  Try to live just one more day."

She was fighting cancer too.  Her doctors had discovered that her disease had jumped the chemo and they were out of options.  They were going to try a new drug cocktail, but they didn't hold out much hope.  So her only hope was to take her own advice and try to live one more day.  Who knows what those researchers might discover, right?

Fast forward almost 8 years down the road. In a conversation with  a prominent Immunologist the other day, we got specific about Leroy's cancer.  Without getting into the scientific details of his disease, it became fairly clear that his chances of responding to these new immunotherapies for cancer probably would have been pretty high.  Certain cancers are shrinking and some patients are watching their tumors disappear.  Other cancers scoff at these new agents and continue to thrive.

Bottom line....hooray for these immunotherapies that are working because they can be studied and answers as to why some work and others don't can be figured out and that's what precision medicine is all about, right?

New clinical trials will prevail, immunotherapies instead of chemotherapies will prevail, or something else will come along: that's why we always hold on to our hope.

Until then, "Just live one more day."

 

 

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It's not unusual to see some patients wearing masks inside the cancer center.  When immune systems take the brunt of chemotherapy and other treatments zap our own power to fight off even the simplest of germs, there is a need to take precautions and a mask can help with that.

But an image has stayed with me from a few days ago that I just can't shake. It seemed like everywhere I turned in the lobby of the cancer center, everyone was masked.  Small children being wheeled by their care givers were wearing masks.  Patients attached to T-stands and IV drips walking the open area were in masks.  The people I rode the elevator with were also wearing masks.

When Leroy was at Hopkins the masks were a pale blue color: solid blue with white ties.  No more, just like the nurses uniforms that now come in patterns from cartoon characters to flowered patterns, masks have evolved too.  Some are multicolored, others have patterns on them, and I'm sure that's all a part of an elaborate marketing survey to make patients feel less like patients.

But that day it was imagery overload.  It was cancer overload.

 

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Tis the season...for giving in cancer world.

Have you been paying attention?

Recently, at Johns Hopkins The Bloomberg/Kimmel Institute for Immunotherapy was dedicated at a ceremony that included Vice President Biden.  Michael Bloomberg and Sidney Kimmel, two of cancer's biggest philanthropists led the way: each donating 50 million dollars.  Immunotherapy will alter the course of cancer care and this institute will help make those changes.

Next, enter Sean Parker, the Facebook and Napster phenom, announcing in April that he was creating the Parker Institute for Cancer Immunotherapy and he did it by donating $250 million dollars that will bring together six leading cancer centers charged with developing ways to unleash our immune systems in the fight against cancer.

Just the other day, the Johns Hopkins Greenberg Bladder Cancer Institute was dedicated. Erwin and Stephanie Greenberg made a multi-million dollar donation to fund one of the "forgotten cancers," that being bladder cancer.  The institute is the first of its kind and will bring a better understanding of this cancer and how best to treat it.

And then there's you and me.  We give too.  Probably not in the millions like some, but our checks count too.  They count for a lot because we've been where our checks are going.  We've been on the other side of cancer.  The side where we wish the immunotherapy had come around a few years earlier.  And we wish that research had pushed out effective clinical trials sooner too. We wish that the standard of care had been a little more advanced so that our loved ones would have had more time with us.

But that's why we give and that's why we have hope.  We are among those who carry the 'giving gene.'

 

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It's National Nurses Appreciation Week.

Any one who has stepped into cancer world knows what it means to appreciate nurses.  We could not have navigated this complicated journey without our nurses.  There is not one story, but hundreds if not thousands of them and they all circle back to a nurse and the kindness and understanding they provided us each step of the way.

Maybe some day when all the gene sequencing is done, some one working at the lab bench will stumble upon a little known gene that will be known as the "nurses gene."  It will be unique and present in the few who have the gift of giving, sharing, and consoling.

The more I think about it, a week is not nearly enough.

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Shortly after Leroy died from colon cancer, almost 8 years ago, a friend of ours would call me and say she had dreamt of him.  He was in his jeans and cowboy boots, short sleeve shirt and he was sitting on a rock somewhere, and he was smiling.  She had this dream a lot and I was always jealous because I really never had those kind of dreams.

He was buried in my heart but I simply couldn't dial-up that kind of a dream.  I guess that's why I love looking at all the photos around the house.  Big smile: Big Leroy.

That's the way it's been until last night, or more to the point, early this morning.  I really don't know how long the dream lasted, I only know I didn't want it to end. It was in color and it was a moving, talking, walking dream that felt so real.  I was outside the house to begin with, and there was some kind of power outage so I walked into a room and there he was, standing there in an orange printed shirt and I remember the bottom of the shirt was shredded. He was wearing his jeans too.  His presence startled me and when I said "OH" he smiled and said "I just got back." "I didn't mean to scare you."

And then he leaned in and he kissed me.

I woke up.  But I wanted so badly to close my eyes and drop back into that dream.

And then he kissed me.

 

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The words "You have cancer" have just landed in your head and there's an instant hum or buzz that's taken over.  You're watching your doctor's lips keep moving, but not a word is  landing in the lobe where thinking and processing was so easy just a few minutes ago.  Your brain has shut off.

The switch has been flipped, at least for a while.

When you come back around to the new reality that is now your life, my guess is your care giver who heard those same words has suggested it's time to take a walk through the internet and find out what all those words, your doctor used, really means.

Tread lightly is all I can tell you.  There should be a cancer glossary that comes with every type of cancer, so when you dive into the internet in search of answers, there's a stock of words with meanings attached, to make it a little more understandable.

Blood draw and red and white count, chemotherapy, radiation, those are all pretty commonly known these days, but if you're headed for a clinical trial and your research nurse is talking about phases, or placebo's or blind studies, you really need that glossary.

Cancer is a complicated disease.  The words that go with it can make it a real challenge.

So before you start to read up on treatments, and descriptions of what's going on in your body, stop and ask your medical team to explain the words they'll be using first.  When you grow your vocabulary in cancer world, you're way ahead of the game.

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There is no to telling how the missing will present itself.  It's coupled with the grief and it's a mixture so intense after a long battle with cancer, it's a wait and see phase after such a big loss.

Some families stick to each other like glue, thinking one will take the burden off the others.  Some go just the opposite direction and scatter to the wind, preferring to grieve on their own.

But what if it's a split decision?  Where does that leave us?

There's no real resolution to this question.  It causes such heartache inside a family unit that was unbreakable during the cancer journey.  They worked together every step of the way.  They closed ranks when a crisis would come up and they laughed together when lighter moments meant exhaling, even if it was just for a few minutes.

Now, this unit is shattered.  The core of this family is gone.  If he were here, he'd be unhappy with what's going on and he'd call the family together and tell them to stop being selfish and reunite.  I can hear him strongly suggesting they all lean on each other because these are tough days and no one can make them even close to normal again, until this family locks arms again for a different fight.

This is the fight to survive without their leader: without their anchor.

You can't let this intense missing destroy what once was a strong family.  That gives cancer another win, and that can't happen.

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