Cancer deals out the good, the bad and the ugly in generous portions.  and it’s important to talk about all three.  The good is easy.  It’s spelled out in three little letters…N-E-D.  There are no better letters in a cancer spelling bee. 

We adjust our lives to deal with  the trauma of the diagnosis, treatment follows, the outcome is a good one and eventually life returns to normal or close to it.

Many cancers can be treated like a chronic disease now, controlled by medicines that knock it out or knock it down.  Cancer survivors, and that’s a term I don’t use very often, call themselves that because they have seen the beast, and lived to tell the tale. 

Some of us have not been so lucky in cancer world.  When it’s been bad, it’s been very, very bad. 

So it comes down to facing the fact that cancer kills. 

How do we handle that?  More importantly, how do we talk about the ultimate outcome?

As a cancer patient cargiver, do we ask the right questions of our loved one suffering with this disease?  I mean do we ask the tough questions, when the cancer has reached a place where death comes knocking? What are their final requests? Do they want us to carry out certain tasks?  Who should be there to say good-bye?  In those last days or hours, how do we make them feel at ease?

This is a life changer, I assure you. It will be one of the hardest things you’ll ever do, but it will also be one of the most important.

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Let’s call this day, OUR day. 

We’re taking control of the day.  We all know how important it is to stay in control while we’re in a cancer fight.  There are so many new voices stepping in, trying to pull us one way and then another, it’s not unusual to feel like you’re spinning out of control.  There are so many decisions to make.  Some doctors try to make the choices for you, while others throw out so many options, you’re blown away by what’s in front of you.  So today, I’m here to remind you to stay in control.

If you don’t know all the answers, ask.  It’s as simple as that. Ask questions and get answers that will help with your decisions.  Making the right choice is especially important in cancer world.  Talk it over with your caregiver.  Sometimes another voice on the subject brings in another point of view that will lead to a better decision about treatment or looking toward the next bend in the road.

But stay in control.  You’ve been there for a long time,and just because cancer is in the room, shouldn’t change that part of you.

When we’re making our own choices, we feel empowered and that gives us strength to fight even harder.

With cancer, you get an extra layer of “tough.”  There’s a reason for that.  We all need the “tough” part to stay in the “control” part.

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I never got either one of their names. But I’ll remember them forever.  You never forget the angels in your life, especially when they visit you in cancer world.

 It was after midnight, Leroy was hanging on to life by a thread.  I’d held on to his hand so tightly as the O-R nurses wheeled him closer to the door that would separate us for many hours…maybe even forever.  The doctor had been very clear that his chances of coming through this spinal surgery were slim.  I didn’t want to let go, but I had to let go, so I kissed him and told him I’d see him when he woke up in recovery.  

 The floor was pretty much deserted  I walked toward the waiting room.  It would be a very long night. 

I never got her name. She just appeared with warmed blankets and pillows.  She told me to get as comfortable as possible and out the door she went.  She was angel  number one, that night.  Some one to take care of me when I really needed it. 

Same night, different nurse, or angel. This one was my life-line to the operating room.  Like clock-work, she would call me every couple of hours to give me an update on how the surgery was progressing.  And when it came time for her shift to end, as the new day dawned, she decided, she couldn’t leave me now…so, she stayed until Leroy was safely on his way to recovery.  We met outside the O-R and she put her arms around me like angels do.

Pierse, our oncology nurse, our angel from the first day at the cancer center until, well, she’s still a part of my life.  Angels don’t come any better equipped than Pierse.  

We meet so many of these angels as we make our way on this cancer journey.

They come in all shapes, sizes and skills.  They wear scrubs, they can hang a bag of chemo, change a dressing, they can find a vein, they know when to smile and they know how to take away the worry.

Angels rule!!

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First things first…Al…you know we are all keeping a good thought in our hearts for you and your wife. It is wonderful news to hear she is improving.  Hour by hour, we can only hope that continues.

Laurie Hirth…where have you been?  What a great surprise to “see” you here.  Isn’t it great that our group continues to grow, but we have our core, those who rooted in this community years ago and stick with us.  I appreciate every single one of you, more than you know.

Actually, Laurie used an interesting phrase in her post…the “friends we never met.” I guess we are that, but we have helped each other through so much cancer chaos over the years, I’ve always felt we really have met, at the toughest turning points in our lives.

It makes me wonder about all the times we’ve passed strangers on the street, in the grocery store, at the gas station, smiled at them, and for that fleeting moment, connected.  Are they struggling in cancer world?  Have they visited our community?  Should they be a “friend we never met?”

We are a powerful group.  Cancer, as horrible as it is, has taught us some great lessons in life.  We’re survivors now.  We’ve learned to navigate a world that puts up terrible obstacles along the way.

We’ve learned patience and we’ve learned how to conserve our energy for the really tough times, and some of us have a masters in caregiving now.  We’ve learned to share too.  Especially here, at “Our Cancer.”

As the saying goes, “we’ve gone to school on cancer.”

And we’re friends forever.

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HOPE

That’s it…it’s all about HOPE!!

That’s what makes this all worthwhile.  It’s HOPE.

We all have to have it, otherwise why bother with the treatment, with the fight, with being a caregiver or a nurse….or with being a patient?

We are in this battle because inside all of us, no matter what hat we’re wearing, is that thing we call HOPE.  Chemo can’t kill it.  There’s not a surgeon alive who can cut it out.  It’s what brings the nurses back into the infusion room day after day and it’s what empowers the caregiver to do what they do…give life to a loved one, a fighting chance. 

It’s the engine that hums along inside the cancer patient that drives them to believe they can live another day, maybe another week, maybe another month.

And if that life ends, hope seems, for a while anyway, to end with it…but that’s the best part about it….it will come back…it will make it all worth while again.

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This is a place where we come to talk about how we cope with cancer.  Some of us are in the middle of the fight and some of us have been through the worst of it and are coping with loss. 

Have you ever wondered how oncology nurses cope with being in the fight every single day? I mean this is a career choice that boggles the mind.

Take the infusion room, where nurses dispense bags upon bags of chemotherapy.  These men and women don’t just hang a bag and move on to the next chair. Nurses know their patients.  Everyone knows everyone. It’s not unusal to be greeted with a hug and a “How are you?”  The conversation could move on to talk about the family, or a favorite sports team.  Where ever it goes, the nurse and the patient, they’ve bonded.  They are on this mission together.  This could go on for years.  These nurses have extended families that number in the hundreds.  The cancer patient and the cancer nurse….this is quite a team.

The same goes for the oncology nurses stationed on the cancer floors of the hospital.  Some patients are there for weeks.  These nurses become the thread that connects patients to their doctors and to the outside world.  Hospitalized patients appreciate a friendly, skilled nurse. 

And what about the nurses?  My bet is they appreciate the same in their patients.  Many good friendships are forged between cancer patient and nurse because this disease does not let go easily. You become a part of each others’ life.  And what happens if the worst happens and the patient dies?

Do nurses have a place to go to get help?  Is there a blog made for them where the sadness can be spelled out to make them feel better?  Do they huddle around each other and “lift” like we do here, when death takes a long time member of that extended family? 

Coping in cancer world is far-reaching.  Maybe next time you see your cancer nurse, YOU be the one to hug first.  YOU be the one to ask,”How are you feeling?”

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What a wonderful face.  He looks a lot like a young Lance Armstrong, lean and fit with a soft smile and a voice that pulls you closer because you don’t want to miss a word of what he has to say.  He knows his medical record better than any doctor.  He can tell you what his counts are and what his last scan showed and of the ten or twelve chemo’s he’s tried, which one seemed to work the best.  Actually, they all seem to have worked pretty well. When you ask him how he feels, he’ll tell you he’s had a little discomfort. 

Not exactly.

Thinking back, I remember how Leroy responded when he was asked that question.  He would answer the same way.  “Feels kind of like the flu,” or “It’s not too bad, it passes.”  What I would remember was a very different reaction to those nasty cancer drugs.  Just like yesterday, when the wife of this young man spoke up and spoke the truth.

But like Leroy, this cancer patient, refuses to give, even the slightest advantage to the disease.  By not acknowledging that the chemo makes him crazy sick, he’s still in the drivers seat. He’s still in control. One of the most important parts of living with cancer, is staying in control.

Who knows how much longer this pillar of strength will be in that position. 

He was at the cancer center yesterday to meet and listen to a different set of doctors, who remind him of himself. They are willing to take safe, agressive steps and think outside the box, if that’s what it will take to keep on living.

He’s already thrown the survival stats on his disease out the window.  He’s the patient the doctors talk about when they quote the science numbers for a particular cancer treatment.  So many die, so many live an extra 3 months and then there’s the one who just keeps on living.

That’s the best stat of all.

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Did he feel my fingers laced through his?  I was holding on so tightly, trying in my own way to chase away death by pulsing life from my hand to his.

Did he hear what I was saying?  I think I was whispering and I’m not sure why.  I should have been screaming, “Don’t die.”  But, I knew death was in the room and it was only a matter of minutes until it would claim its victim. 

Leroy’s death left me, the caregiver, with all the same questions Ned and Kathie raise.  I don’t think we really question how much of ourselves we put into the fight. We KNOW that… Our questions parallel the unknown.  Questions left unaswered. 

There wasn’t much left of me after that night of August 15, 2008.  I was exhausted. The disease had taken every ounce of reserves I had left.   What ever the magic potion was that kept my heart beating through those final stages of the battle, were down to their last drops. 

 Had I let Leroy down at the end of his struggle?  Could I have done more?  Did he see the cracks in my armor?

If I’d get another chance, what would I do differently? 

It’s not easy to go there….

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Clearly, from the calls and the blog posts, many of us have been rocked by the ‘other conditions’ of cancer. These ‘conditions’ not only touch the patient, but the care-giver is in the bullseye too.  Granted the ‘conditions’ are different than what the patient feels, but they are just as powerful and need attention too.

Speaking from experience, depression from the pure sadness of the ups and downs in the fight, hit the caregiver just as hard.  But the feeling of inadequacy comes to mind. ” Why can’t I fix this for my loved one? ” Helplessness, lack of control, and if cancer takes that precious life, as the caregiver, you question yourself…”Did I do enough?”  And of course there’s always the “How did this happen to us?” which brings us full circle to the sadness and living with the loss.

These are not scientific issues.  These ‘conditions’ can not be resolved in the lab.  They are the human condition that comes with living in cancer world.  But beleive me, they are just as important as the science of cancer. 

We have hundreds of reports released about cancer every year, filled with data on surviving the disease, dying from the disease, being diagnosed with the disease.  What about all of us who are carrying around the baggage of the disease? It’s real and if you ask me, it’s an epidemic. 

 Look into my eyes…a caregivers eyes….that’s where cancer leaves it’s permanent scar.

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Cancer comes with so many conditions.  The diagnosis brings fear, anxiety and sadness.  But that’s just the beginning.  It’s hard enough dealing with all of these emotions, we don’t see what’s coming around the bend.  Maybe that’s because we don’t know what’s coming around the bend.

Patient, care-giver, doesn’t matter which one…we’re so thrown off our game by just hearing the words “You have cancer,” that we’re not even thinking about all those unknown conditions this beast has in store for us.

There should be some kind of pamphlet handed out on your first visit to the oncologist, that says, “BEWARE”  aside from the chemo, radiation, and surgery down the road, here’s a list of other conditions cancer comes with. 

What about ‘chemo brain’?  That fuzzy, scattered feeling that comes with all that chemotherapy.  What about the overwhelming fatigue that goes hand in hand with radiation?  And, what about the depression that sets-up shop and can completely alter a person’s outlook on living?

The depression that comes with cancer is real.  It alters healing.  It alters relationships.  It alters the will to go on.  In the middle of fighting cancer, one of the most life disturbing events in a persons life, comes this sneaky condition known as depression.  Oncologists keep an eye-out for it in their patients and there are drugs that help,  but many times, it’s just not enough.  Family members and friends are left wondering what to do. 

We’ve come a long way in the ‘treatment’ of cancer.  Patients are living longer because science has discovered some of the secrets cancer has been hiding as it’s moved through the genome. Researchers know where to look now to stop this disease or at the very least, slow it down.

But are we prepared to treat the other ‘conditions’ of cancer?  They are just as important as treating the disease itself, because if a patient is so depressed about his condition, he’s lost the will to fight, science and medicine might as well call it a day and lock-up the lab.

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