We mean well, we really do, but sometimes the words just don’t match what we’re trying to convey.   This is especially true when it comes to cancer, care givers or even patients.  And it can happen during the illness or following the loss of a loved one.

I remember it happening to me and to Leroy more than once.  We’d have visitors over who came to cheer him up and tell stories and have a few laughs.  All would be going smoothly and then when it was time for them to leave, they’d say something like, “Don’t worry, you’ll be fine,” or “My Aunt Kathy had what you have, she didn’t make it, but you’re a real fighter.”

I’d get the “Hang in there, Laurie” or “What doesn’t kill you makes you stronger.”

I would close the door and wonder, WHY would something like that even enter their minds much less leave their lips?

So consider this to be a friendly reminder from someone who has been on the receiving end of some of the most outrageous attempts at “meaning well.”

Think before you speak.  That you speak at all says a lot about how much you care and that means a lot to the caregiver or the patient, just think-it before you speak-it.

 

 

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If you’re in the car, behind an SUV stuffed with beach toys and luggage, I feel your pain; Should have left earlier!!

I’m sitting at the computer working on a web cancer series that will hopefully guide those who are looking for cancer care in the Washington Capitol region.  Any information that helps cancer patients get comprehensive care is worth working on even when others are fixated on the beach, the bar-b-que, and a long awaited weekend.

Precision cancer care is here.  It’s targeted, to each patient and their cancer.  Even the toughest cancers are showing they can’t escape what immunotherapy and other treatments are providing doctors as they attempt to turn certain cancers into chronic diseases.

In a few days, some of the very best cancer physicians, researchers and scientists will gather for their annual meeting and no doubt we’ll hear some good news about how these dedicated men and women are making big-time gains against this beast that has changed so many of our lives.  We have to believe in their work.  We have to hope that some day they’ll be out of work: No more cancer.

But right now, the first, big holiday of the summer season is upon us. Don’t forget it is Memorial Day…honor and remember our Veterans.

Travel carefully….Be safe.

 

 

 

 

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Till death do us part…

How do those words fit into real life?  How do they fit into cancer world? If you uttered those exact words, and lost the one you swore to be the love of your life, is there another one out there for you?

It’s like precision medicine these days.  Each person’s illness is unique; so their meds and treatment need to be suited to them.  It’s personal.  It’s individualized medicine and it’s much more effective than the old way when it was one plan for everyone.

So I guess we all have to decide for ourselves, what works best now that our world has been turned from two to one.  We have to decide how long it should be before we even open up our hearts and allow another person a peek inside.

It probably depends on how involved we were in the care of the one we lost.  It depends on what the relationship was before the diagnosis. And it depends on how we handle being a one instead of a two.  Is one half of the closet empty now, or does that dress or shirt still bring back special memories?

Till death do us part…..

 

 

 

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PT 2008

He was working so hard to learn how to walk again.   It was 2008 and his last surgery had taken a toll.  The cancer had required a vertebrae be replaced in his spine.  Somehow a staph infection had attached itself to the new part and emergency surgery resulted in a replacement part and a very sick patient. It wasn’t enough that he was fighting metastatic disease, but add to that a metal piece of hardware where bone used to be and then add to that an infection of major proportion and it was one heck of a rehab.

He’d sweat and curse under his breath and clinch his teeth, but he was so determined to stand and ultimately put one foot in front of the other.  Walking was his goal and I remember thinking his physical therapist probably thought he’d never reach that goal.  She really didn’t know her patient.

He walked.  He worked so hard and he walked: First with a walker, then with a cane, then with just the grit of a man on a mission.

That’s what the calendar notation says today.  The 2008 calendar I glance at every once in a while, reminding me of just how hard he worked to live.  He was a warrior.

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It’s an annual event of the heart.

We, who have lost our loved ones to cancer put our hearts on display.  We’re not afraid to put them out there on this night because all of our hearts are bruised.  They all show signs of wear and tear, so there’s nothing to be embarrassed about.

Some of us who have had more time to heal, have hearts that have resumed a normal rhythm by now.  Those who have felt cancers’ bite more recently are still trying to find that pulse.  It never really returns to ‘normal,’ but I’m not about to share that information.  It will be known soon enough.

This “Night of Remembrance” is an evening designed to bring peace to these ailing hearts.  It’s a time for reflection, a time to allow ourselves to mourn again and a time to lean on each other for support.  For some, it’s a test of strength.  Can they physically walk back into a building that is filled with memories of scans, treatments and for some, lost HOPE?

“I came for closure,” a new widow shared her thoughts through her tears.  It was her final step to close the book on many years of living in cancer world.  Her heart was an open wound.

When the music stopped, the prayers were said, and the stories of inspiration were finished, the overflow crowd moved to an art piece where they were asked to write personal notes on strips of cloth.  These messages of love and loss are woven through wire on this night but eventually become a ‘rope of memories’ that currently stretches to 72 feet.

But it’s the hearts that take center stage on this night: Open, aching and in need of attention.

Heart ache shared is still heartbreaking.

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I’m remembering our first glimpse into cancer world when Leroy and I first heard the words, “You have cancer.”

Actually, his doctor said, “We have a problem.” Then he showed us a color-glossy picture of a large colon cancer tumor taken only minutes before when Leroy had gone in for a routine colonoscopy.  He followed up with the words “You have cancer.”  Frankly by then, my head felt like it was about to explode and I could hardly catch my breath.

In the beginning it really never occurred to me that we needed a team of doctors.  We really never needed any doctor.  I had my GYN doc, Leroy never got sick, so the only doctors he went to where the ones who inoculated him before he went off to a war somewhere in a desert or a jungle.  Vaccines were his protection, not from bullets, but from disease.

So when we arrived at Hopkins, the team began to assemble: slowly at first, but if you are familiar with the Kimmel Cancer Center, you know they attack cancer care very aggressively.  Doctors come with that aggressive treatment.  By the time his treatment was over, and we’re talking years, his medical record looked like a set of encyclopedia’s.

But, you know, it was necessary and worthwhile because I will always believe his life, both quantity and quality was enhanced because of that team.  They stayed close to his case.  They shared information and if they didn’t know the answer to something, they took it to a tumor board or a researcher and asked questions and got answers.  They were mightily supported by the best nurses I’ve ever seen.

We had a team.  They were worthy of any pennant, any world championship title, any trophy.

My suggestion, if you’re in this fight: BUILD A TEAM, it’s essential.

 

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One of two battling cancer is a full plate.  Two of two is unimaginable.  It’s unfair. It stretches the limits of what a couple can endure.

She has just finished her treatment for breast cancer.  She is weak in body, but strong in spirit.  She walks with a slight bend at the waist.  I’m not sure she even realizes that she is slumped over, but I noticed it as she walked away. Her hair is starting to grow back, but she still wears her wig.  It gives her that ‘complete’ look, something that her wisps of short hair don’t quite do yet.

But more important that any of this physical stuff is the man who stands by her side.  His appearance has changed a lot in the last year.  He’s lost so much weight.  His posture has changed too.  He is weak in body but also strong in spirit.  He is still the man of her dreams.

They are, even in cancer, a perfect match.  They support each other.  When they talk about their cancers, the HOPE echo’s in their voices.  They talk about future treatments for him, and how his cancer will be treated as a chronic problem versus a terminal disease.

“In sickness and in health,” says the vow….

Cancer to cancer, they stand together.

 

 

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How did they become our care givers?  How did they seem to always have the right words when the days were the most difficult?  When you needed a hand squeezed or an arm around your shoulder or even a hug, they always seemed to be there, didn’t they?

These folks were strangers until we heard the words “You have cancer.”  Odds are, we never would have crossed paths with them, but now, they are in our hearts forever.  They were there for us at the most important times in the journey.

They took our vitals just by looking at us.  They didn’t need a machine to tell them when our blood pressure was high with anxiety.  They just knew when our temperature was rising because cancer had turned-up the heat.

We had their phone numbers and their emails and at the slightest sign of trouble, we would alert them and they would have an answer.  They cleared an appointment for us when our doctor was booked solid for the day.

They were our lifeline when life was threatened.

This week is Nurse’s Appreciation Week.  Isn’t every week?

 

 

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Late effects cancers are brutal.

They not only mess with the body, but with the mind too.  Just when you think you’re out of the woods with a primary cancer that has created havoc in your life not once, but twice and doctors have been wise enough to attack the cancer with the right drugs and procedures to make it disappear, ‘boom,’ it comes back as a different cancer years later and is probably the result of a treatment that wasn’t quite as solid as it should have been.

That is the story of a young woman I met recently.  She was diagnosed with lymphoma at 20.  That’s bad enough, but she was living in a remote part of the old USSR and her treatment was not what it should have been.  When her cancer returned, she was coming to the United States and she made the choice to come to Johns Hopkins for treatment. Another very tough regiment of treatment that included a bone marrow transplant, and her lymphoma was sent packing.  N-E-D.  Cancer gone.  New bone marrow, new immune system; healthy body.

UNTIL a few years later and she’s now faced with an entirely different cancer and her doctors are pretty sure this rare cancer comes from her first cancer and treatment.

She’s a warrior and is fighting with gusto.  She says being a cancer veteran, she’s prepared for the worst but won’t allow herself to go there.  “There’s too much to live for” is the way she put it.

Late effects cancers have a way of making the past, the present all over again.

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We just assume with a cancer diagnosis comes the willingness to go through treatment.

That really isn’t true.

I write this today, almost exactly 21 years to the minute that my Mom took her last breath.  She died of cancer six months after her diagnosis.  She made the decision not to have treatment. So many things went into that choice, some of them she shared with me and my sister and some of them she didn’t.  I know we knew her well enough not to challenge her.  It would have caused such anxiety between us that it made sense to make peace with it and do everything in our power to give her the best, last months of life.  There was only one vote here and it was hers to make.

So how strange is it that the last two days I’ve gotten phone calls from friends who have family members newly diagnosed with aggressive cancers.  Both patients are older and both are contemplating whether or not to have treatment.  One of these patients feels he’s at a point in his life where he’s content to see if the cancer really ends his life before natural causes of a long, happy life would step-in and do the same job.  He says “it’s tempting to let this play itself out.”

My Mom never lost HOPE in her final months: Her HOPE just changed course.  I suspect the same thing is happening with this patient too.

As we all know, treatment can be really hard on a body and mind.  Where we are in life, the places we’ve been, and where we see ourselves down the road all play a factor in deciding to treat, or not…..

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