A Hairy Tale

 

I like to think I’m not a wimp.  But I must admit, I’ve been dreading the dentist appointment that was on the calendar today.   Leroy used to make this sound, mimicking the dentist drill every time I’d have my scheduled check-up.  He knew it would make me cringe and he thought he was so funny and clever to be able to make that sound. I miss hearing it now, but I still get a little worked-up in anticipation of that drill.

So, into the chair of cold sweats, I went.  I didn’t want to say anything when I saw my dentist, but I was wondering why his hair was so long.  I mean we’re talking ponytail length and that’s just not a good look for him.  But of course I didn’t say anything. 

The check-up and cleaning went fine and I unpeeled my fingers from the arms of the chair and got ready to leave.  I guess my dentist felt the need to say something about his hair. 

“I’m growing it for Locks of Love,” he said.  “My entire family is doing it.”  He went on to explain they do this family project every couple of years because they know too many people who are fighting cancer, kids and adults, so this is their way to make a difference.  And, yes, he knows he’s getting a lot of funny looks because his hair is getting long, but he just smiles to himself, because he has a secret.

Soon, that hair will be shaped into a fine hairpiece and a cancer patient somewhere will feel better about himself. 

Today’s trip to the dentist wasn’t bad at all.

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It’s March, do you have a happy colon?!

I ask, because March is Colon Cancer awareness month. 

Near me, in the District of Columbia, some local university hospitals  invited uninsured and underinsured women and men between the ages of 50 and 64 to take advantage of free screenings.

Colon cancer is one of the big five in the U.S..  It’s one of the deadliest cancers, and it’s one of the most preventable cancers.  I know that sounds like a contradiction, but if you catch it early, there’s a good chance surgery and treatment can knock it out.  If it results in cancer in other parts of the body, it’s a tough disease and can kill. 

The key to catching colon cancer is colonoscopy.  Early check-ups by colonoscopy, if polyps are discovered,  usually results in those polyps being removed and regular follow-up colonoscopy is suggested. 

Leroy died from colon cancer.  He knew he had a family history of colon cancer  so he went in for his colonoscopy a few years before his 50th birthday.  It turned out to be anything but routine. 

Leory’s grandma pushed back her colon cancer more than once and lived a very long life.  His mom, faced colon cancer too.  I guess you could say her remission lasted many years and when cancer came back, it struck in the abdominal area with such force, this time, it would take her life. 

She died three years ago today.

June Sievers always felt guilty about her son’s cancer.  She carried the gene’s, she always said, that killed her son.  We would tell her,  that just wasn’t so, but she was never convinced.  Leroy and his mom suffered a country a part.  One on the West coast, one on the East coast, but they felt each other’s pain and would comfort each other by telephone on many nights.   

June would always try to sound stronger than she really felt.  She would devote her energy into telling Leroy that she was fine, not to worry about her, everything would be ok.  She was being a “mom.”  She never knew he would consult with her doctors, who would tell him, the cancer was agressive and there wouldn’t be much time left for her.

June Sievers was a strong woman.  A wonderful visitor to our home.  We loved her and we loved her spirit.

She died just a few days before her birthday. 

I like to look at the calendar and think of March, as June’s birthday month.  A day of celebration. It’s so much better than marking March 22nd as the day she died.

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Well, here we are, in our new home.  You know what they say about real estate…Location, location, location…What better place for a blog about cancer, cancer patients, and cancer care-givers, than the Kimmel Cancer Center at Johns Hopkins?

The reverse is true too.  How lucky Hopkins is to have this community share it’s knowledge and experience of living with the beast.  We’ve walked down the cancer road with all it’s twists and turns and surprises.  We’ve celebrated NED scans together and shared in the pain of remission turning into relapse.  It’s what cancer does in many cases and we know that too.

But after all this time, we’ve learned to lift when the load gets too heavy.  I don’t know of any one in this community who hasn’t needed some lifting at one time or another.  Cancer is a heavy burden. Every day the patient faces the fear and anxiety of living with the disease.  The care-giver picks up the pieces of  life that has changed forever and together they do what they can to make that new life something that isn’t defined by the disease. 

It means taking the old habits and tossing them and making new routines that fit around a schedule full of doctors, tests and treatments.  Not easy, but essential.

So, that’s what we’ll do here, just like we’ve always done.  Share our experiences and hopefully help some new members who are just trying to adjust. 

We’re here and we’re ready to share.

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I sit here at the computer and I look to my right and Leroy is smiling through a heart-shaped frame. His smile is fixed behind a small piece of glass, so it doesn’t fade.  Many afternoons, as I’ve sat down to write the day’s entry to the “Our Cancer” blog, I’ve looked at that picture, for guidance and inspiration.

Six years ago, Leroy sat in this chair and began to share his life experience of living with cancer.  He really didn’t know what to write.  He wasn’t sure what was expected of him.  He some how came to the conclusion that his heart and soul would find the words and his fingers would do the typing, and “My Cancer” would be the result.

What a combination that would prove to be.  I would come to call it “Leroy’s hood.”  This community of friends and fellow cancer warriors gathered daily.  This is where cancer met it’s match.  The honesty of Leroy’s posts touched a place so deeply hidden in all of us, we weren’t sure how to repsond at first, but when we realized these posts were the real deal, cancer exposed for what it was, the flood gates opened and the “My Cancer” community grew by the thousands and from all over the world.

Leroy’s voice may have been silenced when he died on August 15, 2008, but not this thoughts..”My Cancer” morphed into “Our Cancer.”  This community has remained solid and continues to share experiences relating not just to the cancer patient, but to the care giver too.  We need to thank the good people of NPR for recognizing that need.  They’ve given us a good home these past few years.

So now, it’s time to un-hinge the “Our Cancer” shingle and move to our new home, here, at the Johns Hopkins Kimmel Cancer Center website.  It is the perfect match.  The blogs will continue and your comments will be welcomed as always. 

http://our-cancer.blogs.hopkinsmedicine.org  That is the new address…bookmark it and use it daily!! Please, continue to be a part of our family.

We still have a lot of work to do.  We need to share our stories with those just walking into cancer world.  They need to know how to handle what many of us have already been through.

All I have to do is look over at that heart-shaped frame holding Leroy’s picture to know we’re doing the right thing.

See you all here, at http://our-cancer.blogs.hopkinsmedicine.org on Monday.

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Where would we be without the nurses?

I know we look to the doctors to come-up with creative ways to treat cancer.  We look to the doctors to be aggressive.  If a treatment fails, we look to the doctors to come-up with a Plan B that is equally as good, if not better than Plan A.  The doctors are the trained specialists we lean on for our medical guidance, but where would we be without the nurses?

The nurses, highly trained as well, provide us with a soft landing when we crumble to the ground in cancer world.  When we first  enter the doors of this strange and scary place, our nurses are there, reaching out with a steady hand and an open heart.  How do they find the room in those hearts, to fit us all in?  They encourage us to share our fears with them.  The questions they ask, aren’t just about the meds, but instead, they want to know how we’re feeling!

Their support is in place to help us deal with what we’re going to face down the road too.  They are smart enough to know that sometimes just talking about our every day lives, anything to get us off the topic of cancer works wonders.  And, sometimes, it’s just a smile at the right time that takes away the worry and the fear.

They give us a helping hand by just being there.

As I was observing in a clinic the other day, I watched a nurse work her magic on a couple so stressed and stunned they had landed in a cancer center.  They kept saying “How did this happen to us?” We’ve all been there.

Nurses are born with tools the rest of us don’t carry.

It’s just my opinion, but I don’t know hwere we’d be without them.

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Flashback

There I was, pacing the floor…walking off and measuring the squares of flooring, counting how may it took to reach the far wall.  Leroy was in the room, sitting on the exam table, waiting for the doctor to come in for a consult.  It could have been about scan results, blood tests, or a new course of treatment. 

What it was, was a flashback from a time a few years ago when that would have been a regular day for us. We were living in cancer world.  Now, it was in my minds’ eye, as I stood outside that exam room yesterday, watching a couple, not that different from what we were like then, waiting for their results.

I was there as an observer, working on a project at Johns Hopkins, but I must admit, some of those old anxious feelings came back to haunt me.

I looked into the eyes of the woman who was waiting to hear what her scans revealed and I saw the first signs of how cancer had already changed her world.  Just the anticipation of hearing those words “You have cancer,” had already started to work their way into her psyche.

Her caregiver, the man in her life, tried so hard not to give-in to his worry.  His hand on her shoulder gave her strength.  But, there came a time, when both of them couldn’t stand the stress anymore and they just held on to each other, hoping it would all go away.

This scene was most likely played out in the next room and in the next room after that one.  It’s what happens in cancer centers everywhere, every day.

I remember, just like it was yesterday.

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A New Home

We’re turning another page on the “Our Cancer” blog.

This time, the blog is making the trip North on 95 to Baltimore.

It’s finding a new home on the Kimmel Cancer Website at Johns Hopkins.  This will be an easy transition for all of us. There’s nothing complicated about joining the site.  It’s a new web address, but that’s about all there is to it…

http://our-cancer.blogs.hopkinsmedicine.org

This is such a logical spot for “Our Cancer” to continue to grow.

This community was born, in a sense, in so many of those exam rooms, surgical suites and chemo pods, as Leroy battled his cancer at Johns Hopkins.  He created “My Cancer” from his experiences there.  “Our Cancer” followed in those footsteps.  These were big shoes to fill, but we did it because it was important to keep this voice, his voice alive.

Remember, nothing changes…”Our Cancer” will be there for you.  You’ll be able to post your comments just as you have over the years.  NPR will NOT forward any of your account information to the Kimmel Cancer website, so to get email updates, RSS feeds, you must re-subscribe at the new site.  And, of course book mark the new address too.

This will be the final week for the blog to apprear on NPR’s website.

http://our-cancer.blogs.hopkinsmedicine.org

See you here..at the new address.

Laurie

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