There are no words that can adequately convey the depth of the sorrow…

How did we become so broken?

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My neighbor Susan spotted it first.  She pointed to what looked like Indian corn growing amongst the leaves and twigs in my yard.  The more we looked the more we saw, it’s everywhere.

It’s not Indian corn, it’s called “American cancer root.”  That’s right, of all the places a plant with the name “cancer root” has decided to grow, it has chosen my yard.

According to the USDA Forest Service, cancer root is a parasitic plant that grows when it can attach to a root system of certain oak trees. I have many beautiful oak trees.  It usually finds the perfect conditions to grow in the Eastern half of the United States and in Canada.

The description and explanation of this plant is extensive on the website.  What I really wanted to know was why do they call it “cancer root?”  The best they can do to answer that is to say “the name may simply stem from the parasitic growth form of the plant in general.”  “There is no scientific evidence that it has any cancer prevention or cancer causing properties.”

“Cancer root” appears to be a question-mark in the plant community.  That alone should allow it entrance into the cancer community. Don’t worry and visit us at spielautomaten

 

 

 

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None of us really knew what we were doing when we became “care givers.” At least I didn’t so I’m speaking for myself and thinking there are a few of you out there who would agree with me.

A metastatic cancer diagnosis is a hard sentence to accept.  Some care givers, like myself again, start with a tool box only slightly full.  We have most of the right words to say, we find ways to provide comfort on days when our loved ones can’t get comfortable, we find our strong face on treatment days and our hopeful face on scanning days.  Some how those items come, neatly folded and ready to wear with your care giver tool box.

I know our lives are changed in the present and in the future, but remember what our loved ones are going through: it’s much worse for them.  Cancer hurts.  Treatment is hard.  End of life is a constant thought.

So when we, the care givers, begin to feel the weight of care giving, HOLD THAT THOUGHT.

Dig deep into that tool box and find what you need to mask that notion.  There’s something in there: something you’ve been keeping fresh for just this moment.  Or maybe this isn’t the first time you’ve needed it.

And consider who you’re wearing it for.

 

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The first time I met Muhammad Ali, I was producing a sports radio talk show in San Diego and he had come to town preparing for a heavyweight fight against Ken Norton: a former Marine who was a longshot to make it through the first five rounds of the fight.  In fact, Sports Illustrated called him “Ken Somebody.”

But Ali, being the showman that he was, knew how important it was to hype the fight, and being a long time friend of the sportscaster I was working with, decided to make an appearance and spend a little time with the crowd that had gathered to get a glimpse of the champ.  He was a people magnet.

He needed no introduction.  You heard him before you saw him and he parted a crowd like the biblical story of the Red Sea.  “I am the greatest.”  His voice carried over the crowd and with his entourage in tow, he made his way up to the broadcast stage.  What was supposed to be just a short “promo” for the fight turned into an hour of Ali at his very best.  I was in awe of the man:His quick wit, his intelligence, his charm. He was dressed in a dark suit, white shirt, dark tie. What struck me most, his hands.  He had the most beautiful hands I’d ever seen.  I mentioned that to him and with a twinkle in his eyes, and with not one moments hesitation, he reminded me that he was just simply “beautiful.”

When fight night came, the San Diego Sports Arena was standing room only.  It’s safe to say the majority of the crowd had come to see Muhammad Ali make quick work of Norton.  Instead, Kenny, with his unorthodox style of fighting, threw a right that met Ali’s jaw in the second round.  Those of us at ringside noticed blood dripping from Ali’s jaw and couldn’t believe it.  The fight continued, in fact Norton won the fight on a split decision.  The arena crowd was stunned when the final bell sounded.

What transpired next is etched in my memory forever.

Post fight, the winner’s circle parties the night away.  Ali’s crowd had planned for that: Norton’s corner, not so much. But with the surprising results, that changed quickly. And what about Ali?  The champ did not stay for post fight chatter, in fact he was whisked away quickly.  For me he was still the story, but where had his trainer Angelo Dundee taken him?

A small hospital just a few minutes from the arena had an unexpected patient.  In the ER, on a gurney, Ali waited to meet a doctor who would say later, how amazed he was that Ali stood in the ring for 15 rounds with a shattered jaw.  Even more amazing when I arrived, expecting a horde of media, I found just Dundee, Ali’s long time friend and corner man, Bundini Brown, and my colleague Jerry Gross.  Angelo was shattered just like Ali’s jaw.  He was convinced his fighter would never step into the ring again.  The four of us sat together in the waiting room while Ali was in surgery, watching the minutes, the hours creep through the night.

And then Ali just disappeared.

Jerry and I searched all over San Diego for him.  We used every source we knew to put the word out we were looking for him, but with no results.  Many days later, the phone in the sports office rang after the 11 pm show.  I picked up the phone to hear a muffled voice saying “I know you’ve been looking for me, but I didn’t want to be found.”  Realizing Ali had found us, when he was ready, he went on to offer a meeting that late night at a small coffee shop in a back booth with no cameras.  We brought a cameraman just in case, but when we got there Ali, wearing sunglasses in that back booth made it clear we were welcomed but not the camera.  He told us he couldn’t, wouldn’t let his fans see him like that.  He face was so swollen with his jaw wired shut, he was drinking coffee through a straw.

We talked about the fight.  We talked about the future.  Ali knew every detail about our search for him after that night in the ER.   The fact that we had been the only two journalists who had followed him after losing the fight did not go unnoticed.

Years later, at the Atlanta Olympics, Ali would visit the athletes village.  I was there shooting a story when word spread like wildfire that he had arrived.  The athletes were running to surround him and my crew and I were in the stampede.  When we got to Ali, I was told my crew could not shoot the event.  We weren’t a part of the Sports Network group, and as much as I protested, we were being muscled away when a voice that once roared over the crowd, whispered “stop.” Ali had turned to Angelo Dundee to say, “She’s with us.”  Before I knew it, we were a part of the inner circle.  The Champ had remembered.

All those years earlier, a young sportscaster had stuck with him at one of his lowest moments and he remembered.  We made eye contact and even though the Parkinson’s had invaded his muscles, his mind was rock solid.

The beautiful hands were ravaged with arthritis by then too.  But not the twinkle in his eyes….that’s where he held his memories and they were crystal clear.

 

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We’ve all talked about how special some of our experiences have been with certain nurses as we made our way through cancer world.  As much as we’d like to say ALL of our nurses were special, SOME really made an impact on our lives during the battle and some have even stayed in our lives long after the cancer fight was over.  Those are the really special ones.

The same goes for our doctors.  In our case, Leroy and I had a pretty big team of docs who jockeyed in and out of our lives. A very few were constant day to day connections.   I mean it’s been close to 8 years since Leroy died from colon cancer.  So I know a special doctor when I see one.  He has helped friends of mine who have suffered with cancer.  He has been my constant cancer consultant, when I have questions about the disease. When I hear about something new on the treatment horizon, I always ask him if this would have given Leroy, more quality of life, more years.  In the past, he would usually nod “no” and we’d move on from there, but now with Immunotherapy and his type of colon cancer being one with multiple mutations, he actually said “maybe” which allowed me many follow up questions.  We were lucky to have found such a truly caring physician and I’m so very lucky to be able to call him a friend now.

Such is the case with a very talented and dedicated Pancreas Cancer physician and researcher.  She got into the business of Pancreas cancer back in 1986 when her uncle was diagnosed with the disease.  He was basically sent home with pain meds because there was nothing for him.  Treatment was just not available then.  He died in three months and she told me
“that was just not acceptable.”  So she went to work on this brutal form of cancer.  She’s one of the reasons there has been progress and many discoveries made on this type of cancer.  She’s front and center in the clinical trials world and pancreas cancer is in big trouble thanks to her lab.

She told me the other day, her goal is to “get something I’ve developed into standard of care for Pancreatic cancer patients. That’s the ultimate goal. I will feel like I have contributed to patients and to science.”

She’s another ” something special” one.

There are plenty of “OK” docs out there. Some “special” ones fill a smaller list, but then there are those who have that “something special.”

Don’t settle for anything less.  They change the world.

 

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Consider this a sharing moment.

There are many of us out there who were care givers to our metastatic cancer loved ones.  Mine happened to be my husband who through out his entire adult life was an awesome television news producer.  I tell you this because that meant his job put him in spots where he needed to be in control and ready for just about anything as he produced stories all over the world.  He was really good at taking control and he did this around the house too.  He hired well.

I never paid much attention to this because he handled this stuff: but when his cancer started to take him out of the day to day decisions because the cancer decisions were more important, I found myself sliding into a new role.

He saw this change too and began, what I look back now and think was my tutorial on hiring and caring for things around the house, or with the cars or just some basic life decisions too.  He was subtle because I too, am a television news producer, with all of those same traits,  so he knew better than to push too hard.  You know what, it worked.  At least some of it did because just today when a workman came to do some repairs at the house, I remembered back to a Leroy teaching moment.

He would get a chuckle out of today’s blog.  He’d never think I would admit to this, but I am.  I was paying attention!

 

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There are so many phases of the cancer journey.

“You have cancer.” The minute you hear those words, the world changes.  Phase One: processing that sentence.  Do we get it?  Do we understand what that means?  We think we do, but once you’re inside cancer world, it becomes clear very quickly, we didn’t get it.  We didn’t have a clue what that meant.

Then we move into the scans, the biopsies, the blood work, and that leads to the plan and then to the treatment phase.  By now we have a medical “team” who we hope is communicating with one another so the plan is a successful one.  Along the way we’ve picked up a whole new vocabulary of words we never knew existed but if we’re going to keep up with the plan, our new words are a must have.  Do we get it yet?  We think we do, but we’re beginning to wonder if we’ll ever get a real grip on this ordeal.  I guess that’s Phase Two.

The treatment plan is hard.  Some times the side effects are rougher than the treatment.  Some times there’s surgeries to deal with or procedures we could never imagine to keep our loved ones alive.  They go through so much just to live another day.  We stand by with our love and our support and we think we’re advocating for all the right moves, but there are days and many nights when we wonder to ourselves, “Do we get it?” Phase Three is a hard phase.

Through it all, we try our best: NO, we try much harder than our best, but we can’t change the final phase.  Phase Four is unimaginable.  The loss is so great.  We followed the plan, we had faith in our “team” and they worked so hard not to get to Phase Four.  We appreciate their effort beyond words but it still ended badly.  Phase Four is unimaginable.

Did we ever get it?  I think so.

 

 

 

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I remember it so well.  The phone would ring and she would talk to Leroy for a few minutes just to see how he was feeling.  She never ended a call without saying those words, “Just live one more day.”

Her message, what she was trying to say was, “Those guys in the lab are so close to coming up with something that will extend your life.  If it’s not today, it could very well be tomorrow.  Try to live just one more day.”

She was fighting cancer too.  Her doctors had discovered that her disease had jumped the chemo and they were out of options.  They were going to try a new drug cocktail, but they didn’t hold out much hope.  So her only hope was to take her own advice and try to live one more day.  Who knows what those researchers might discover, right?

Fast forward almost 8 years down the road. In a conversation with  a prominent Immunologist the other day, we got specific about Leroy’s cancer.  Without getting into the scientific details of his disease, it became fairly clear that his chances of responding to these new immunotherapies for cancer probably would have been pretty high.  Certain cancers are shrinking and some patients are watching their tumors disappear.  Other cancers scoff at these new agents and continue to thrive.

Bottom line….hooray for these immunotherapies that are working because they can be studied and answers as to why some work and others don’t can be figured out and that’s what precision medicine is all about, right?

New clinical trials will prevail, immunotherapies instead of chemotherapies will prevail, or something else will come along: that’s why we always hold on to our hope.

Until then, “Just live one more day.”

 

 

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It’s not unusual to see some patients wearing masks inside the cancer center.  When immune systems take the brunt of chemotherapy and other treatments zap our own power to fight off even the simplest of germs, there is a need to take precautions and a mask can help with that.

But an image has stayed with me from a few days ago that I just can’t shake. It seemed like everywhere I turned in the lobby of the cancer center, everyone was masked.  Small children being wheeled by their care givers were wearing masks.  Patients attached to T-stands and IV drips walking the open area were in masks.  The people I rode the elevator with were also wearing masks.

When Leroy was at Hopkins the masks were a pale blue color: solid blue with white ties.  No more, just like the nurses uniforms that now come in patterns from cartoon characters to flowered patterns, masks have evolved too.  Some are multicolored, others have patterns on them, and I’m sure that’s all a part of an elaborate marketing survey to make patients feel less like patients.

But that day it was imagery overload.  It was cancer overload.

 

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Tis the season…for giving in cancer world.

Have you been paying attention?

Recently, at Johns Hopkins The Bloomberg/Kimmel Institute for Immunotherapy was dedicated at a ceremony that included Vice President Biden.  Michael Bloomberg and Sidney Kimmel, two of cancer’s biggest philanthropists led the way: each donating 50 million dollars.  Immunotherapy will alter the course of cancer care and this institute will help make those changes.

Next, enter Sean Parker, the Facebook and Napster phenom, announcing in April that he was creating the Parker Institute for Cancer Immunotherapy and he did it by donating $250 million dollars that will bring together six leading cancer centers charged with developing ways to unleash our immune systems in the fight against cancer.

Just the other day, the Johns Hopkins Greenberg Bladder Cancer Institute was dedicated. Erwin and Stephanie Greenberg made a multi-million dollar donation to fund one of the “forgotten cancers,” that being bladder cancer.  The institute is the first of its kind and will bring a better understanding of this cancer and how best to treat it.

And then there’s you and me.  We give too.  Probably not in the millions like some, but our checks count too.  They count for a lot because we’ve been where our checks are going.  We’ve been on the other side of cancer.  The side where we wish the immunotherapy had come around a few years earlier.  And we wish that research had pushed out effective clinical trials sooner too. We wish that the standard of care had been a little more advanced so that our loved ones would have had more time with us.

But that’s why we give and that’s why we have hope.  We are among those who carry the ‘giving gene.’

 

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