I think it’s time for us to gather at the round table. 

I’m talking about all the big cancer movers and shakers in this country…Some leading doctors, researchers, founding fathers of cancer foundations, all the folks who have made a big footprint on this disease and then and most importantly,  include some long standing cancer warriors. People who have been through the hell of cancer treatment and the agony of metastatic disease.

Everyone comes to the table, but the only voices spoken, are those of the warriors.  The “experts” need to listen to these warriors.  Listen and take notes…the warriors will tell them what their real concerns are when it comes to treatment, healing, living and dying.

Care givers should be included at the table too.  We know about these things.  Experience has taught us what the real concerns of living with cancer are…so much more than the medical side of the disease.

We’ve seen town meetings on so many subjects….the economy, finding a job, war. 

Why not cancer?

Pull up a chair.

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Mo, I think it’s safe to say we all hope your friend L comes out of the hospital with the doctors’ shaking their heads, unable to find any cancer. 

You know the old saying among oncologists…”It’s not what we see, it’s what we don’t see that worries us.”

When we were still new to the ways of cancer, and even though Leroy was told he was a stage-4 colon cancer victim, hearing the news that his lymph nodes were clean following surgery meant everything to us.  In those days, when that was the finding, doctors didn’t prescribe chemo as a follow up to surgery.  Clean nodes, meant, healing and back to life you went, with regular check-ups and scans.  Today, he would have had a series of chemotherapy treatments to catch any of the ‘wild’ cancer cells floating around in search of a new place to root.  As it was, Leroy was just shy of 5 years “clean” when his cancer mets were discovered. 

Even with his regular exams, I’ll always wonder how those tumors went undetected.

So where does cancer go when it hides? 

Does it stay under the radar on check-up days and then when no one is looking..BOOM…it appears in the brain…or the liver…or the lung?  Does it float through the blood stream or the blood/brain barrier waiting for the immune system to have a bad day? I can just picture it, dodging the chemo or ducking the radiation with a smirk on its face. 

I always picture cancer as a “thinking” disease.  It’s far too clever, the way I see it, to be as dumb as a cold or as dull as a bruise.  No, it “thinks” its way through a body. 

How else could it go into hiding, only to be found, when IT feels ready?

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She’s been through many rounds of chemo now and it hasn’t been easy.  Two different kinds of cancer was found in one of her breasts, so you know treatment was fast and furious and now she’s bald.  That’s what so many chemo’s leave as a trademark of treatment.

At first, she wore scarves, sometimes hats….these were ways to disguise her baldness.  This woman has one of the best faces too.  Big brown eyes that speak to you with a simple glance.  Her cheeks are full and they frame a beautiful smile.  So I’m sure she felt uneasy in the beginning, without her hair.  She didn’t want her young daughters to be embarrassed of Mom. 

But now that’s changed.  Now, it’s her daughters who are telling her, ‘Go for it, Mom.’  And so that’s exactly what she’s done.  She’s taken the ‘Bald is Beautiful’ approach and gone are the hats, gone are the scarves.  With cancer you get this….a new look and a new strength to go with it.

My friend is back to work and back in life.  And she’s getting more comfortable with her baldness every day.  Her hair may be gone, but she isn’t.  She is still smart.  She is still savy and she is in the game. 

And somewhere in her home, there’s a huge pile of scarves and a few hats too.  Who needs ’em!!

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Two men who don’t know each other.  Two men fighting the beast with every thing they’ve got. 

Two of the strongest men I’ve ever met.

They were both diagnosed around the same time.  One has colon cancer, the other has leukemia.  Both have gone through extreme steps to stay alive.  Multiple surgeries on the colon and a bone marrow transplant….and that’s just dealing with the cancer.

It’s what has happened to each of them aside from the cancer, that’s made them into warriors. 

Not that having colon cancer isn’t enough, one warrior suffered a stroke in the midst of his cancer treatment.  The doctors had to stop treating the cancer, while a new set of doctors stepped-up to treat the stroke.  It took a very long time to get him to a place where they could concentrate on the cancer again.  But they did it and he had the strength and the will to fight another battle. 

With leukemia and a bone marrow transplant, a big bag of side effects comes with the procedure.  This has got to be one of the most difficult “corrections” of a disease out there.  In many cases, if the leukemia doesn’t kill you, the bone marrow transplant certainly could and if you get through those two killers, all the other problems that arise from the new marrow put a body through such an ordeal, it’s a wonder, my friend is still, as he likes to put it, “vertical.”

But these are two of the strongest warriors to walk this earth.  I’m sure they don’t see themselves this way….but I want them to know, I do.

I bow to your spirit.  I applaud your will to live another day.

You may not know each other, but you were cut from the same cloth.  Bravo!

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There is no summer vacation in cancer world is there?  I was on the highway this afternoon, after some meetings in Baltimore and rolled smack-dab into the beginning of the July 4th traveling crowd.  Folks who figured, “Why not leave on Thursday?  No one will be on the road Thursday.”  Hah…not exactly.  Cars were packed with beach toys, luggage, surfboards and smiles.  Heading to the beach for the long weekend.

My head was still back at the cancer center and I thought about the patients who were leaving there with no idea that all that extra traffic was in their immediate future.  Some would be feeling the hangover from radiation, others coping with chemo brain and no doubt a few who had just found out their lives had changed with the diagnosis of a cancer.  Summer vacation, even a long holiday weekend would be spent recuperating or rebounding from that experience.

My hope for them is that they find a little time in the days ahead to enjoy and celebrate the Fourth of July and the good things that go along with it. 

Don’t let the beast get the best of this holiday. 

Wishing all a happy and safe Fourth…Happy Birthday, USA!!!

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A lot of emotion riding on this debate about Avastin.

Bottom line….you have breast cancer and you’re taking Avastin.  It’s working.  It’s blasted through all the other therapies you’ve taken and it’s found those cancer cells and it’s killed them.  It’s gone where no other cancer medicine has gone before in YOUR body and it’s put the beast in a box somewhere, at least for now.

So, YOU, the breast cancer patient, with the help of your insurance company should be able to continue to take this medicine, right? Not so according to the FDA….and now, an advisory committee to the FDA agreed in a unanimous vote of 6-0 that the drug should not be approved for breast cancer. 

According to reports, this appointed committee feels the risks of the drug out-weigh the benefits.  Too much toxicity and the drug did not appear to help women live longer or have a better quality of life.

Avastin will stay on the market because it’s approved for several other cancers.  But, if the FDA follows the panel’s recommendation, insurance companies and Medicare would be less likely to cover it’s big price tag for breast cancer.

I wonder who on either committe has anyone close to them who might be fighting breast cancer today?  Might be taking Avastin and seeing a benefit from it?  I’m just wondering….would they vote the same way?

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How much does superstition play in your cancer world?  Is it or was it ever a factor?

It was in our years with the beast.  We parked on the same level, on the same side of the parking lot at the cancer center for every appointment.  If there came a day when there wasn’t a spot open, one of us would say something like, “The day’s starting off wrong already!”

During Leroy’s chemo days, I would leave the infusion room just as his drip would begin and drive down to a little bakery at Fells Point.  They had those cookies with big chocolate drops on top and Leroy loved them.  They may not have had medicinal powers, but they had good karma in them, and that’s all I cared about.  Those cookies did just as much for his spirit as the chemo did to the cancer, or at least, it seemed that way.

We always saw patients walking around with lucky pillows, stuffed animals, good luck charms.  If cancer does anything, it gives a person permission to believe in just about anything that will make a difference in how you face your disease. 

My little Webster’s dictionary defines the word ‘superstition’ this way, “Beliefs based on ignorance, fear of the unknown, or trust in magic.”

I’d say someone in the Webster’s family has faced cancer.

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I send an average amount of emails every day.  I try not to stay glued to my computer for hours.  It’s just not a good thing to do.  But it’s fun to say “Hi” and to keep up with friends and family.  I send a few birthday greetings via email, sometimes a serious note but I still find the written word sends the best message.

I heard a wonderful radio report this morning about how the world is forgetting to write.  Email is just so much faster.  And, as we all know, faster is the way of the world these days.  But the written word still carries a stronger message. 

Can you remember back to when you actually took the time to buy a card, put a pen in your hand and sat down to write a little note? 

Staying in touch is one of the most important parts of caregiving.  So many of us have friends or family members who are struggling with cancer these days.  Have you ever thought to just sit down and write a few words to say “I’m thinking of you?”  I’ll let you in on a little secret.  I used to send Leroy cards when he was sick.  I’d mail them at our post office and they’d come to our mailbox a day or two later.  Words written from my hand to his heart.  Priceless.  Sending the same thoughts via email would have landed with a big thud.

So pull out a favorite pen and paper and get to work.  Some one out there can’t wait to hear from you. The pen is mightier than the computer.

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It doesn’t matter if you feel like you’re going through the motions or if you’re really living again, because you’ve survived the most terrible thing you can imagine.  You’ve lost a loved one to cancer and you’ve lived to fight another day.

Waking up to your brave new world isn’t much fun.  It’s filled with challenges you never imagined you would face.  It’s a world of the lonely.  It’s a world of starting over.  It’s face to face with the second step. 

But remember, we looked at our special warriors who were fighting their cancer and we were in awe of their strength.  They looked at each day and faced it and their cancer and never flinched.  It was a different world for them too. 

We have to remind ourselves of that every day.  Talk about role models….what better examples could there be?

We can do this…We’re survivors too….

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The question came in the middle of a phone call from some one I hadn’t heard from in quite a while.  Since no one has asked me that question in a long time, I really wasn’t prepared to answer it…atleast not in the way it was asked. 

It’s been hours now since that call and that question is still rattling around in my head.  “How ya doin’ all by yourself?” 

Am I “All by myself?”  I guess I am.  For so many years there were two of us.  Now it’s just me.  Death by cancer meant death of life as I had known it for a very long time.  Putting together a new life takes a lot of work. 

In the beginning, I didn’t want anything to change.  That might sound strange, because I really had no choice in the matter, but I fought the change.  I think that comes with the grief and the shock of the loss. If you can hold on to anything during that time, you do it with everything you’ve got.

Slowly, and I mean slowly, the new life begins to unfold.  New responsibilities pop-up and old habits fade away.  It’s a huge adjustment, and there’s no denying it.

Friends, friends as a couple vs friends as a single, thinking for one instead of two…lots of changes.

So, “How ya doin’ all by yourself?”

It’s an interesting question…..I’m working on the answer.

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