What to do now?

If I charted his course from July of 2015 to today, seven months since diagnosis, the line would hardly show anything but a steady decline.

Oh sure, there were a couple of weeks in there where when he was home, feeling a little better and even when he was in the hospital, he managed to walk down the hall, have a smile on his face, listen to his rock and roll and talk sports.  But a couple of weeks isn't enough to use the word remission.  He never went into remission.  His chemo worked for a heartbeat, then it was clear the cancer would be in control of his life.

When and now,  its progressed to the point of heartbreak for me to see him so uncomfortable, I just want to scream.

It's so wrong.  This is such a good man.

I mean, I know in my head and heart, that cancer is still a killer of good men.  There may be so many new ways to stop this disease, or at least put it in a box for a while, but on the flip side, there are still so many cancers that can't be detained.

And I'm struggling;  do I want my friend to keep on fighting for 'quantity' of life or do I want him to return home, be comfortable, feel the love of his family and friends around him and live out his days in peace? I don't want his cancer to have such a tight grip on him that he'll fight, but suffer too.

I see the chart line.  It's bending downward and it will until it ends.

 

 

 

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I've written about her so many times.

She was defiant when it came to her cancer.  It would show its face somewhere in her body and she would say "NOT HERE.  I'll show you who's boss." And she'd follow her medical team to the land of clinical trials and they'd put her on a trial that would send that cancer back into hiding.

It would stay in full retreat and this strong, determined woman would go on with her life.  NO cancer was going to dictate how she would live.

This happened over and over and over again.  Her doc's were in awe of this walking, talking genome of medical strength.

She was paying it forward, while enjoying the success of these new drug combos that gave her a present.

I called her a warrior.  I thought of her as a hero.

She's struggling now.  Some of her vital organs are showing signs of a long battle coming to an end.  Her cancer waited for an opening and took it and she's paying with her life.

She's still a proud warrior in my book and I'll always consider her to be a hero.

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Loneliness…

"It torments the young and terrorizes the old."

That's the opening line of a front page article in today's Washington Post about loneliness.

It's considered, according to this piece, to be a public health hazard: no, a "SERIOUS public health hazard."

Scientists say they have identified links between loneliness and illness.  They go so far as to say that" social isolation changes the human genome in profound, long-lasting ways."

So I'm asking, what's a cancer care giver/ survivor to do when you find yourself alone after losing a loved one?   What do you do when the "two" turns into a "one" not because you wanted it that way, but because a horrible disease broke that "two" into pieces?

Now you tell us not only are we left to pick-up the pieces, tidy up what was left behind and neatly fold it away in a memory box of some sort, but along the way, be sure we quickly find new ways to fill the void, "be social,"  because our genome is changing and it's sending us down the path of poor health and an early grave.

Loneliness: a byproduct of cancer's wrath is now a lot scarier than we ever imagined.

 

 

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When cancer gets tough, caregivers get tougher.

It's our time to dig deep into our tool bags and find that smile we had saved for this kind of day.  Remember those assuring words we knew we'd need at some point in this journey?  They are in that bag too; somewhere in a zippered pouch waiting for just the time to use them.

The magic foot rub: when all the stress that cancer creates is reaching overload;  got to find that soothing, scented lotion that brings deep, relaxing breaths.  It's in there somewhere.

A washcloth to rinse away days in a hospital bed or old photographs of better times with family and friends to make the cancer go away for a while.

A care giver's bag is not to be shared; one size does not fit all.  On the contrary, each care giver is unique, their tools are honed with their patient in mind.

A care giver's bag is made with love.

 

 

 

 

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Over 50 million people are in the path of this big Nor'easter heading this direction in the next few days.

We're all being reminded to make the run to the grocery store, get gas in our cars, have enough fuel for generators and check to see that you have the batteries you need for flash lights and that one transistor radio you keep in the drawer for that 'once in a blue moon' occasion.  I know it's supposed to be a full moon, which could lead to big tidal surges, so if you're in the path of this storm and happen to be live near water, take precautions for that too.

For those of you who need medical aid, plan ahead.  Don't assume the storm will come and go with no fallout.  There could be power outages.  If that will impact a loved one's condition, take steps now to avoid an emergency.  If the roads are a mess, that means they are a mess for fire trucks and ambulances too.

Do you take medicine that can't be missed?  Get to the pharmacy if you're low on your prescription.

There are some things we can't avoid, when these big storms disrupt our lives, but by thinking ahead BEFORE the flakes start to fly, we can protect ourselves.

I know, you're probably thinking, "they always predict another storm of the century and it never happens."

So you have a couple extra cans of tuna, and enough meds to last an extra week, it can't hurt to be prepared.

Be safe and stay warm.

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Stay close….

The uncertainty when the cancer moves to places where it begins to look like domino's falling in a long, snake-like line.

The first one hits the next one and that one isn't quite strong enough so it falls over on the next one and so it goes.

With cancer, it might be an obstruction, that can be 'fixed' by a tube, but then the tube gets clogged and an infection begins, that generates a fever,and while the medical team is working on putting out that problem, no one is watching the cancer and then the kidneys begin to falter because the cancer has been allowed to move freely,  and so it goes.

The patient becomes weaker by the hour, even with all the medical attention.  It's not their fault, they've been a fighter from the beginning, but the cancer load is heavy.

What's a care giver to do?  You've done your best work, caring and loving for your patient.  What's a care giver to do NOW?

I can only offer up this advice: STAY CLOSE.

Hold tight to your loved ones' hand.

Let them know how much they are loved.

Let them know how much they are loved.

 

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So I'm a little peeved that Leroy wasn't here today.  (No, I am not living in denial, I know cancer took his life 7 years and 5 months ago tonight)

Since the sun came out today and the temps were in the 50's, I decided I'd give the yard a final clean-up before we really get our winter.  I took out the blower and cleared the leaves from the driveway after the wind storm we had last week.  The trees dropped a million little branches, so I filled up bags full of sticks too.

Tomorrow, my back will remind me of every time I bent over to play 'pick-up sticks.'

This took hours and then it was time to tackle the split rail fence.  One of those big, heavy wooden rails needed replacing so I got in the car and went to my friendly home center where a young guy helped me find what I needed but after I bought it, there was no designated "loader" to put it in my car.  These things are 11 feet long and weigh a ton.  So, I struggled with it, finally got a little help and drove home.

And I'm thinking, that would have been a piece of cake for Leroy.  Why wasn't he here to do this.  And as I found out, the really hard part was still to come.

Split rail fences need TWO people to fix them.  They are like a puzzle.  All the rails need to be placed in the post holes evenly and all together or they pop out one by one.  Believe me, I have learned this first hand.  So I've successfully managed to get 5 of the six rails back where they belong.  The sixth is on the ground waiting until tomorrow when I will attempt to finish the project.  I stopped because it got dark and then it started to rain.

These kind of days remind how much my life has changed.

This would have been so much easier if the Big Guy had been here.

 

 

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YOU can never give up.

Elizabeth Edwards used to tell Leroy, "Just live one more day.  That could be the day there's a breakthrough in colon cancer."

And she was right on the money.

Not only is it important to have your checkups but it's just as important to drill your doctor to find out what's new on the treatment landscape.

There are so many new ways to treat cancer now, some are still on the lab bench but they come by way of clinical trials, so they could be available.  It's so worth asking about.  It's okay to be pushy, to dig, to demand they search for the newest, most state of the art technique.  This is your life and if you're going to fight for it, you might as well fight with the latest protocol.

They always say quality of life is more important that quantity, but why not strive for both.

If it turns out your cancer gets the upper hand, there are experts to deal with that too.

But where's there HOPE, there's strength and a willingness to challenge this disease.

Go for it.

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Some cancer patients get lucky.

They take their medicine. They go through countless chemotherapy and some even slog through radiation that can make them feel cloudy, like they're moving in slow motion and moody too.  And when months of treatment are complete they get the good news that the cancer is gone.

Their doctors prescribe check-ups every 3 months to start with and if that goes well, it's stretched out to 6 months and if the cancer still hasn't shown its ugly face again, yearly exams and life pretty much resumes the way it was B.C.

Most patients are pretty good about staying true to these prescribed check-ups. It makes sense considering one of the rules of success in cancer world is to catch it early.  IF there is a recurrence, better to see it on a scan ASAP, rather than ignore a constant back pain or nagging cough or something that might scream "I'm back."

I bring this up as a reminder to those of you who were lucky.  Stay that way and be true to your calendar.

If there's a check-up date circled on your calendar, make that appointment. Get that scan or blood test or whatever it is you need to watch out for any little hiccup that caught early, could mean the difference between life and death.

I know it's been a long time between treatments and your brain is recalling all those days and nights of feeling badly but don't let that sway your decision.  It's not OK to miss just one.

Too many family and friends want you around.  You make a difference in our lives.

 

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She's been through just about every clinical trial known to match her cancer.

It's been her life line and it's worked like magic.  Even when her medical team has been on the verge of saying those horrible words, "We don't have anything else to try," she's some how perked up, showed improvement and lived to fight another day, another week, another month.

If her cancer could talk, I have a feeling it would have cried "ENOUGH' and slithered away beaten and destroyed years ago.

But we all know this disease doesn't play nice.  It plays nasty and it's playing dirty with her right now.

Another trial was over, side effects persisted, so while her medical team was working on fixing that, this sneaky cancer with stealth like persistence found new, soft tissue to spread its misery.

So she's back, gathering her miracle medical team, scanning the trials list, looking for another match.

There must be something else......

 

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