I call them the” Specials.”

Who are they?

When a new patient walks into the lobby at the cancer center, they carry all the signs that say, “I really don’t want to be here and I have no idea what to do next.”  I think there’s a little fear mixed in with the anxiety of beginning this journey into cancer world too.

So it’s up to one of the first “Specials” to meet that patient with a smile, a handshake, and a kindness that conveys a greeting of helpfulness. I’ve seen it a million times.  Just the simple process of checking in for an appointment can be overwhelming, so there he is, ready and willing with all the tools of a “Special.”

You can spot another type of “Special” walking with a patient or caregiver.  Her arm is on a shoulder, or holding a hand.  Her eye contact is direct, but with a twinkle of understanding that this is a bad cancer day and she will try as hard as possible to take some of that bad away. She is a family services social worker and yes, it’s her job, but jobs like that require more than a college degree.  Social workers in cancer world are angels of understanding and compassion.

The cancer center has a chaplain who just “gets it.”  Her degree probably doesn’t use those words to describe her accomplishments and studies, but that’s the way I see her.  She’s a student of cancer.  So it’s not just the calming and peacefulness that comes with her counseling, it’s the understanding of where the cancer patient and family are in the course of the disease.  She doesn’t care what God you pray to, or if you do pray, her purpose is comfort and understanding.  She is a “Special.”

A cluster of “Specials” occupy the out patient center.  One by one they walk out, into the waiting area and call names of those waiting.  These are the nurses who are on the front line of cancer care.  They are the contacts who listen to a patients description of what it’s been like since the last appointment.  How was treatment?  Are the drugs causing side effects?  How’s life?  There’s not a patient or care giver in cancer world who could make it from appointment to appointment without these “Specials.”

These are folks who come to work everyday and do their jobs.  They work seamlessly to make the patient/family experience a smooth one.  But they are by no means, regular folks.  Without them, coming to the cancer center would be a paralyzing experience.

These folks are SPECIAL.

 

 

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She’s come back to give back.  A young woman who feels fortunate to be alive because of the care and treatment she got at the cancer center. Her treatment was intense to say the least, and there were times when she was miserable from treatment and probably wondered if she was going to see another day, but she lived.

She’s in the process of trying to rebuild her life now because that old life stopped for the most part on diagnosis day.  Slowly, she’s finding order to those building blocks and she’s decided that even though the cancer center reminds her of hard days in the past, she wants to build a future at the place that gave her back her life.  She wants to be surrounded by the people who treated her.  She wants to be supported by the nurses and researchers who unlocked the mystery of her cancer. She will always be in awe of her doctors, so why not find a way to make their jobs easier too.

I remember when we remodeled our home.  We knew nothing about contractors and architects and plans and plumbing when we started.  It was a learn as you go process, but in the end, I felt qualified to help future home owners looking to remodel their homes with really good information and tips so they wouldn’t have to go through what we went through.  The same applies in cancer world.  As a care giver, I was a blank page going into the process, but by the time my caregiving days were over, I had notebooks filled with valuable information to pass along.  As I wonder through those halls today, I can spot an overwhelmed caregiver in a heartbeat. It’s automatic: I do whatever I can to make it a better day for them.

And this is the case with my friend.  She’s ready to come back to give back.  Her patient knowledge is beyond notebooks.  She walked the cancer walk and will be the best patient advocate for current cancer victims and those just walking in the doors of the cancer center.  Muscle memory alone will smooth out the rough spots for patients who are new to navigating the complicated halls of the treatment zones.  She’ll have the words to answer the tough questions.  She’s been there and there’s no substitution for experience in this world.

She’s come back to give back.  It makes perfect sense.

 

 

 

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Damn Cancer.

I’m here to tell you it’s not easy carrying around the label cancer “survivor.”  Leroy used to hate that word “survivor” because he always felt it carried so much weight with it.

If you were a “survivor” you had to walk the walk of success: YOU beat the beast.  YOU were somehow luckier than the person next to you in the infusion room for all those months, they didn’t make it, YOU did.

He used to say, I didn’t fight any harder.  We both wanted to live. Leroy was a “survivor” for 4 1/2 years until his cancer showed it’s face in the form of a colon cancer brain tumor. He felt fine, until he didn’t.  That’s when he said, “I guess I’m not a “survivor” any more.

It had gotten to the point where he stopped wondering on a regular basis if his cancer would ever come back.  That’s what so many cancer “survivors” do, you know, they wake up in the morning wondering if this is the day cancer reenters their life.

So this was the day, three cancer “survivors” I know talked about how much they think about their cancers coming back.

All three are under regular surveillance in the form of check-ups every three months.  One just had a scan that showed an active lymph node.  Another had a blood test that had an elevated reading and the third is back in cancer world after the discovery of a new tumor.

All three “survivors.”  Two of the three still fit the definition and hopefully those test results will prove to be signs their immune systems are working to fight off any new invasion.

And as many times as their doctors and nurses and families and friends can say “don’t worry,” I’m sure it’s nothing, believe me, “It’s something to them.”  They will wake up in the middle of the night thinking about it.

Damn Cancer.  Being a “survivor” is half the battle.

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Immunotherapy; We’ve awakened our own immune system, with the help of some sophisticated drugs, to recognize cancer as being one of the bad guys and attack with gusto.

All these years it really hasn’t been that way.  We’ve tried to kill the beast with poison in the form of chemotherapy or zap it in the form of radiation.  Both of these treatments seem to work, for a while, but the cancer maps out strategy to pull an ‘end-around’ only to live again.

I guess we haven’t given cancer enough respect.

So what about now?  Are we putting too much stock in our immune system?  Can it really start to spot a cancer advancing on our colon or lung and take aim at this intruder? I’d like to think we can because there’s just too much cancer in this world.

I’m a baby boomer and my generation is filling up oncology floors at major hospitals around the country.  Cancer is a boomer’s battle.  Maybe it’s because we don’t move around enough.   When we were younger, we were athletes, we planned out down time around the gym.  Now they call them ‘health clubs’ and for a small fortune if you squeeze in one ‘body burn’ class a week, it’s a major accomplishment.

The Boomer generation has money and brains, so it’s not that they can’t afford to eat well, play hard and follow what the experts suggest to enjoy a cancer free life.  A sedentary lifestyle isn’t going to cut it, neither is eating fried foods without a vegetable in sight.  It’s just common sense.

Kudos to the researchers and scientists who have discovered the way to our immune system and how to turn it on in the fight against cancer.  But we’ve got to do our part too. Belly-up to the salad bar!!

 

 

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So consider this a bit of a vent…For a long time, I’ve been an advocate of retraining our cancer doctors when it comes to saying those awful words to a patient.

“YOU have cancer.”

We’ve talked about this many times.  That sentence is a world stopper.  Nothing is ever the same again….NOTHING.

And I understand how doctors put it out there because the truth is important to hear.  I’m good so far.  But what comes after that is where I draw the line.  I bet most patients hear those words and the first question they have for their doctor is “How much time do I have?”

It’s here where from my corner, I wish the doctor would stop, take a breath and think long and hard before answering that question with a time stamp.  How a doctor answers that question can mean the difference between living and dying to a patient.  Some patients hear “3 to 6 months” of “maybe a year” and not only does their mind shutdown, but it seems like their body does too.

This comes up today, because I had a phone conversation with a friend who told me about a 74 year old man who was just diagnosed with live cancer.  His doctor told him he probably has less than a year to live and within a couple days of that conversation, that man is now in hospice and has simply given up living.

Words carry heavy burdens in cancer world.  Cancer doctors have the hardest job in the world but they need to think quickly and carefully when their patient asks that question “How much time do I have?”

Think HOPE, not Hospice.

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She is the picture perfect example of a patient advocate.

She was basically told to go home, find a hospice group and die within the comfortable embrace of her family.  Her doctors told her they were out of options.  Her cancer was way ahead of her treatment, she could barely stretch out of her fetal position because it hurt so much and giving up the fight sounded reasonable at the time.

She had a sister who wasn’t going to let her quit, and she jumped on the www. clinicaltrials.gov  web page to search for some  answers.  She stumbled upon a clinical trial underway at the Bloomberg/Kimmel Immunotherapy Institute at Hopkins and reached out.  Though there were no promises, the doctors said “come on down” in so many words.

What happened is probably something many would classify as a miracle: A miracle of medicine and a miracle that you just can’t explain through science.  Her first treatment, on this trial, and her cancer started a hasty retreat to unknown territories.  Who knows where cancer goes when it bolts a body, but that’s what happened here.

She had such a major response to this clinical trial that before she knew her doctors were unable to find what was once a metastatic colon cancer nightmare.

Not everyone in her trial responded like she did and her doctors went to work to find out why.  It turns out she had a particular genetic mutation that worked in her favor and not the cancer that had been raging through her body.

She was given the gift of Life….again.

It’s been more than two years and she’s doing fine.  She returns to see her doctors and they put her through scans and blood work on a regular basis.  N-E-D

Beautiful letters…Awesome meaning….Can’t beat the gift of Life.

 

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Thanks for still being here….I know it seems like I just dropped off the planet, but I’m back and happy to be here.

It’s a cold, snowy day at my house. Mid-March and our first big snow storm of the winter, go figure!  And it came with all the elements too.  Rain last night then big snow then ice pellets hitting the window in the middle of the night and now some flurries.  I guess the winter gods decided to wrap up everything in one big system.

The storm began on an evening of remembrance for me.  It was a year ago that my friend Jay died from gall bladder cancer.  His was the worst of what cancer is all about.  A diagnosis last July and death the following March.  It was 8 months of a hellish battle with little relief from a painful struggle to live.  There are some cancers that are so brutal.  Jay was strong and brave and was a true warrior.

Jay’s family has had  a year to process his loss and it hasn’t been easy.  But there’s a message here for all of us: There really isn’t a time frame on grieving.

It’s been almost 9 years since I lost Leroy to cancer and I still grieve.

I want anyone out there who has lost a loved one to cancer to understand they must let the grieving pass through you as the days, months and years go by…the face of grief will change over time but if you believe for one minute that the one year mark clears the slate, the adjustment to your new life will never be complete. The old you is gone forever.  The new you needs time to emerge and develop.

Let the healing begin.  Allow the healing to go on forever.

It’s good to be back.

 

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When treatment begins and when it ends; two huge days in a cancer patients’ life.

Walking into the infusion area for that first treatment is an uneasy time.  Very few patients enter with their heads held high. Instead, body language speaks of fear and hesitation.  They can think of a million other places they’d rather be and I’m not talking vacation spots.  Chemotherapy rooms, as comfortable and contemporary as they are these days, are still rooms filled with T-stands, bags dripping with harsh chemicals, and most of all, cancer patients.  No one wants to be there.

First timers are afraid.

As the weeks progress, treatment doesn’t necessarily get any easier, but the walk into the room becomes more familiar.  Patients know other patients and nurses and patients have bonded to make the process so much easier.  Any one who has spent time in infusion know a chemo nurse is a patients’ connection to HOPE and sanity and calm.  Your chemo nurse is your anchor.

I’m thinking of two chemo patient’s tonight.  Both are within reach of their chemo finish lines.  One has a date to remove her chemo port. That spot on the calendar is circled. The other is looking in the mirror and seeing hair on her head and it’s the same light brown as it was when she lost it. But she found it at die besten online casinos für österreich – atlas. Two very big deals when you’re in chemo world.

Or about to leave it.

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So how did everyone do over the Holidays?

Did you go into December thinking, “I can do this.”  “I won’t let all those Holiday memories come rushing in to remind me what I don’t have again this year?”

I did.

Did it work? Some of the time, but not all of the time.  I had my moments. Some of those moments were not really moments, they were MOMENTS.  What I have learned over the years is that you can’t fight the program.  It’s just like the experts tell you immediately following the loss of your loved one, “let it wash over you.”  It’s like a big wave on a summer day in the ocean; you can’t fight it, it’s bigger than you, so dive into it, let it roll over you and eventually you’ll come out the other side.

My waves are smaller now so I still feel sad, but I come out of it faster so it doesn’t hurt as much.

I suppose the Holidays are just made to pack a wallop.

I have friends who tell me they feel it on calendar days that aren’t marked in numbers and letters; just regular days, when their memories are sparked by seeing a couple holding hands or a hug good-bye at the airport.

That, I call LIFE.  For some of us, it is in the past and for others in the present.

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Hope in 2017

I guess this is the time to look back over the year and think about the highs and lows and do a little self-correction right?

I’ve never been a big resolution girl.  I look in the mirror and see things that need improving all year long, not just on January 1st!

This is more of a “HOPE” time for me.  I have way too many friends fighting cancer right now.  These ‘boomers” are part of the cancer population and they are warriors fighting for their lives every day.  My wish for the upcoming year is that they get healthy again and that cancer research continues to be funded and new and better treatments find their way to the treatment rooms.

Yesterday, at the cancer center, in the midst of this Holiday season, there were too many patients walking the lobby floor hooked up to IV drips.  There were so many visitors with their arms full of Holiday treats waiting for the elevator to take them to cancer patients who weren’t home for the Holidays.

For those of us who have lived through this season with cancer as an unwanted guest, it doesn’t take much to remember what it was like trying so hard to push cancer out the door and pretend it was just another Christmas/ New Year’s to celebrate.  It was anything but normal.

So HOPE is how I look at this end of year time.

HOPE for better times in cancer world.

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