Who are the real hero’s in the discoveries of cancer treatment?  The brave patients who decide they want to be part of the clinical trials world; that’s who.

It’s hard enough being a part of cancer world, but to add the layer of clinical trials to that existence means earning a real medal of bravery.  Some patients sign on for Phase ONE trials.  Those are the real risk takers.  First line warriors willing to say “Bring it on, no matter what happens.”  That’s a patient who is on the first line of a new treatment, willing to give it all.

But all patients who sign up for trials are taking a leap of faith that this latest discovery is the one that will change the course of cancer treatment for so many, maybe this will be THE one that is that cancer silver bullet.

The researchers can’t live without these brave patients and neither can the oncologists.  They work as a team.  They move the science forward and even with the trial failures, they still move forward, learning from what didn’t work.

I am in awe of you; all of you who don’t hesitate for a second to say “Sign me up.”

It’s a leap of Olympic proportions.

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I hadn’t packed that bag in many years.  Funny how it all comes back to you when you need it.

The newspaper, the bottle of water, some crackers and a little candy.  I even remembered to put in a few new magazines if the procedure went longer than expected.

My young friend Ethan had his surgery today.  It wasn’t a big deal, but it was still surgery.  In fact the he told me the nurses loved seeing him because it was considered ‘out-patient’ and they took one look at him and said, “You’re healthy, you’re not over weight, this isn’t cancer and you should be out of here quickly.”  That’s a great patient to tend to for a team of highly skilled pre and post-op nurses.

It all went according to plan, I’m happy to say, but I still needed to pack that shoulder bag filled with waiting room supplies.  His Mom had her bag too.  Two old veterans of the Weinberg waiting room.  We’ve both been there for much more serious events in our lives.   Both our husbands had faced operations in that building that weren’t as routine.  Cancer operations are never routine.

So today, we really just talked a lot to stay occupied, read a little and texted the folks who were waiting to be updated.

Finally, the O-R attendant came and escorted us to recovery a few hours after the surgery.

Our bags were packed and it was just a matter of time for the patient to be cleared to travel home.

Healing is on the agenda now and the fatigue is settling in from an early morning, stress filled event.

And the ‘waiting room bag’ is empty now: unpacked and back in the closet.

I hope it stays there for a very long time.

 

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Cancer is such a hot topic these days.  More than ever, we hear stories on the news about new treatments.  Medical writers are following every little tidbit on how Immunotherapy is the game changer researchers have been waiting for all these years.  And it’s true, technology has advanced so fast, it’s allowed old ideas, like the immune system’s ability to turn on cancer in the body, to make it so.

We really didn’t have the ability to engage the immune system until the technology and the science met at a crossroads in the lab.

It’s all good news for the patient and really bad news for cancers.  Sounds like the perfect combination to me.  Now it’s about getting the really bad cancers to respond to these immunotherapies.  Some are so resistant to this new treatment, but they’re burning the midnight oil in the labs trying to find a key that gets to the heart of these bad guys.

There’s new energy in the cancer labs these days.  I see it when I’m around the researchers in the Immunotherapy labs at Hopkins.  They know they are on to something very big.  Like all cancer research and discovery, we all want the big results NOW.  Frankly, I wanted the big results 9 years ago.  It just about this time back in 2008, when I watched Leroy’s cancer make it’s big, final push.  No one could stop it.  The treatments weren’t any kind of a match to the cancer that had traveled to vital organs and bones.

Little did we know, across the street from where he was being treated,  the first signs of Immunotherapy working on cancer were bubbling up in the research labs.

He was so close.  He never knew.  I will always remember how he would look at his doctors and say “What else have you got?”

They’ve got Immunotherapy now and for some it really is a game-changer.

 

 

 

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So, a young friend is scheduled for surgery at the cancer center next week .  He doesn’t have cancer, but the surgeon who is doing the procedure works all ends of the hospital and it appears this is where a surgical suite was available, so that adds a little more impact to the day.

It’s back to the belly of the beast.  Back to a familiar waiting room.  Back.

And I’m not alone.  While my friend is having his surgery, his Mom will be sitting in the same waiting area.  This place is familiar to her too. Her husband had many procedures behind those big, heavy doors.  Leukemia is a demanding blood cancer.

Just when you think you’re finished walking certain floors of the cancer center or sitting in certain chairs in certain waiting rooms, something totally unrelated to cancer pulls you back to memory lane.

This should be an easy surgery.  He’s young and healthy and his incision should heal quickly.

It’s the other wounds, from years ago that I’m not so sure about.

 

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What do you look like when you have cancer?

Do your looks change?  How long does it take to get back to the “old” you?

Many times before a patient hears “You have cancer,” family or friends see a change in their loved one.  A sudden change in weight can occur.  Sometimes skin tone becomes grayish, or a little yellow.  If you spend a lot of time around someone, you notice their appetite has changed too.  Sleep habits can be disrupted and then, there are the  night sweats.  These are all red flags we sometimes notice and sometimes we don’t.

Once the diagnosis is made, that’s when the questions come: “Will my hair fall out?”  “Will my skin change?”  “Will my fingernails fall off?”  “What’s neuropathy? ”  “How bad are the side effects?”

Cancer is an image changer.  And it’s just as important to take care of the outside of you, as it is the inside.

I’ll call her Maryann.  She’s an image saver.  She has an image salon at the cancer center.

This is her lab.  She works miracles in her lab.  She stocks potions for your skin.  She can soothe away harsh radiation treatments with creams made especially for that side effect.  She has lotions for your feet and hands that will soften and at the same time keep the skin from peeling.

She has bottles and tubes filled with potions poised to tackle chemotherapy side effects too. There’s special make-up and hats and scarves  and even “Cancer Sucks” bracelets.

Maryann’s touch is probably the most important ingredient in the salon.  It comes naturally to her.  I’ve seen her shave the head of a cancer patient riddled with anxiety over the unknown of the journey ahead.  Her calming conversation absorbs the hum of the shaver and before they know it, the patient is looking in the mirror, wearing a wig that has restored their image to the BC  (before cancer) stage of their lives.

This gift goes way beyond oncology.  This is the human side of cancer care.

Maryann is an “image-shifter,” a secret weapon at the cancer center.

She restores images: something cancer tries so hard to destroy.

 

 

 

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It means everything….

It’s a morale lift to be sure.  It’s like breaking the tape at the end of the race.  It’s the exhale that you’re finished with radiation.  And hopefully it’s the big wave “good-bye” to your cancer.

It’s ringing the bell at radiation oncology in the cancer center.  The doctors gather around and so do the nurses and everyone cheers.

Two of my friends within 7 days of ending treatment, rang their radiation bells.   They are finished: done: completed treatment.  Most of all they are two very happy cancer survivors who will now move on to hormone therapy and that’s a lot easier to handle.  That little pill may give them side effects but no more ‘rads.’

One friend said she felt like she was a “walking night light” from her radiation sessions.  Humor helps in cancer world.

No more radiation treatments help even more.

Ringing the bell helps the most.

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How long does it take to “get over it?”

The short answer is “never.”

But there’s a better, longer answer too.  You never get over the death of a loved one who worked so hard to live and wouldn’t give in to cancer.  So many of us remember those days following our loss, how experts, friends, and family would say, “You’ll be fine.  It will take a while, but you’ll get through this.”  And you did, ‘ get through it,’ but it didn’t take a few months and it didn’t take a year either.  It’s still in process, as they say and will be forever.

I bring this up because today that was the topic of conversation from a friend who lost her Mom years ago and she still feels the pain on certain days when events call-up memories of Mother-Daughter times.

I can relate and I’m sure many of you can too.  It doesn’t take a big holiday to feel the grief rise-up.  It can be the simplest things: the arrival of Springtime, a Orange Jeep speeding down the road, a quick glimpse of a photograph from a vacation that was special.  There are so many things that bring them back to us.

There are no apologies for the feelings either.

How long does it take to “get over it?”

The short answer is “never.”

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He’s in the midst of deciding on a life course.

He knows he wants to be a nurse and not just any nurse, but the best nurse ever.  Good choice.

But here comes the hard part.  He really wants to be a pediatric oncology nurse, but he’s not sure he can handle the job.  “Can I stand-up to cancer attacking such young lives?” he said.  He’s worried the toll of cancer’s harsh swipe on a child will destroy him.  He’s a compassionate person and taking this path might be too much to take on.

I’ve always thought being any kind of oncology nurse is the toughest job in the world.  These women and men are the strongest souls around.  I don’t know how they make it through a day much less a career.  They are the strength of the team.  They are the first line of contact for a patient or caregiver when a crisis comes-up or when a question needs answering or a treatment has gone sideways causing problems.  All these years down the road, and I still remember the days when our nurse pulled rabbits out of her hat and saved the day.

So all I could say to this young man is weigh the options carefully.  Not everyone is cut out to be a cancer angel.  You can get your wings in so many other areas of medicine and still be an angel.

It’s a tough choice.

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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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