It’s always the same.  This weekend of Easter Parades and Easter Bunnies and Easter Eggs.  The memories are vivid.  The basket is full of See’s Easter chocolates.  The truffle eggs are nestled in the cellophane grass.

It was such a tradition and never a surprise after so many years, but Leroy would still act surprised when he’d find this colorful basket at his bedside on Easter morning.

I keep this memory at the ready because it makes me smile on this particular Sunday morning on the April calendar.

My wishes for all of you is to have a Happy Holiday.  Enjoy it the way you do for years to come:

A basket full of memories.

 

 

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The door to the exam room opens and in walks your nurse to sit with you and go over some questions that will prepare the doctor for your exam.  “How have you been feeling?”  “Any side effects to the treatment?”  “Stomach pains, headaches, fevers?”  All questions you’ve come to know and anticipate.  Your nurse takes your blood pressure, she guides you to the scale and takes your weight: standard procedure on exam day at the cancer center.

When your doctor arrives, he/she has looked over your chart and your exam is underway.  All in a day of cancer care and hopefully you leave there ‘status quo,’ if not better.

Do you ever stop to wonder what led your doctor or nurse to oncology?  It’s got to be one of the hardest practices in medicine.  The news is rarely good.  The treatment’s work only some of the time and giving bad news is a constant in cancer world.  It is one, tough, daily grind.

Last night I was in the audience at a symposium titled “Improving Minority Health and Achieving Health Equity.”  How the medical world can better treat ALL of us.

The panel was filled with extraordinary men and women of science and they shared interesting perspectives on the topic of the evening but it was prior to the topic discussion that made an impact on me.  The moderator asked each panelist what made them go into their particular medical field?

I think we sometimes forget that the very people we look toward for medical guidance, have lived through medical crisis just like we have.  They have lost loved ones too.   Disease and illness does not skip the health care professionals wearing the white coats.

A favorite Aunt suffered terribly during her kidney disease and that led to one panelist becoming a leading Nephrologist.  Another went through the heart ache of watching her sister suffer through a deadly childhood Leukemia.  She now leads a team of medical professionals who reach out to the community to introduce the importance of clinical trials for various cancers.  And another who witnessed first-hand from her village in Liberia, what poor health care can mean for socially at-risk groups;she has become a leader in ‘Health Care Equity,”  She takes policy and translates it into practice; improving lives and health care throughout the Baltimore, Maryland region.

This was a wake-up call.  We take for granted, the people we lean on to help us through our hard times. They have experienced their own heartaches.  Maybe that’s what makes them so special.  They ‘get it.’

We need to remember those white coats might be hiding a broken heart too.

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Conversations with other widows (still a term I have trouble saying or writing) always leads me to long talks with myself.  I know that sounds odd, but last night I got into a conversation with a woman who talked about her life with her husband and her life without him…now.

She said she’s so different now, compared to the things they used to do together as a couple.  She talked about how she used to cook so much.  Meals were well balanced and planned out and they would eat together because that was part of being a couple.  She hardly steps into the kitchen now.  She certainly doesn’t cook except to do fun things with her grandkids.  She tries to eat well, but admits to falling into bad habits and then self-corrects and ‘gets healthy’ again. But it’s a struggle because meals that were once fun and anticipated and made for quality time with a guy she was happy to hang around, just wasn’t there anymore.

So of course that got me to thinking about how over the past almost 9 years now, my kitchen habits have changed too.  I don’t make the things that were a part of ‘our menu’ over the years.  Every once in a while, I’ll remember something I used to make and prepare it, but then I have this one dish staring at me from the refrigerator for the entire week and I wonder why I bothered to make it?  I never had that problem with Leroy in the house.  He appreciated the cook and the cooking.

Now, I’m basically a salad girl or a simple one pot, one portion cook.

Do I miss cooking?  Sometimes.

I miss who I used to cook for, the most.

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Did you ever stop to think….

How much work goes in to fighting cancer every single day?  I mean think of the cancer work force in just this country alone?  Patients, Doctors, Researchers, Scientists, Nurses, Social Workers, Caregivers, to name just a few groups and they’re on the front lines.  There are so many others who work to make the cancer centers and infusion rooms and radiation suites operate on schedule. It’s mind boggling when you think of it.

When we walk into a cancer center or our doctor’s office for a treatment or check-up, we are so focused on “us” that we never stop to think about what it took to get us to this part of our cancer journey.

So many dedicated people, so much research and countless discoveries have improved out chances of survival.

Nothing is guaranteed.  These folks have even raised the “HOPE” factor in each of our stories.

It’s time to stop and think.

 

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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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