It's all a Matter of Life and Death...

I need your touch,

and I need my space.

 

I don't believe that I'm overstating this one.  Mom's cancer journey was truly one of so many mountain-top highs and such devastating and heart-breaking lows. 

 

Just as those hugs were a critical factor in her mental and emotional health as she fought the cancer beast... there was something even more critical in her fight, something that actually became a matter of life and death more than once in her journey.

 

And it is this she would share... I need my space.  Or some plain-speak here, Respect My Fragile Health.   Stay away if you are sick, might be sick or even think you were around someone who was sick.  My immune system is gone.  All my fight has been directed at the cancer, there is nothing left over to battle the common cold or argue with your sniffles.

 

And she said this with love.  And a sad smile.  Because it hurt her to hold people at an arm's length and tell them not to come.  She longed to be living life to the full, healthy and whole.  Not hiding in her house, unable to fight off even a simple infection.

 

The chemotherapy treatments were the bad guy here.  While they did an admiral job holding the cancer at bay for a time, they also knocked her immune system out, decimating her white blood cells and leaving her wide open to every nasty bug on the block... 

 

2 instances in particular stand out as we look back at her journey.  The first occurred half-way thru the valley road and brought her out on the mountain top... the second took her straight to heaven's doors... 

 

That first infection occurred about 7 months into mom's pancreatic cancer journey, when she went in for a simple dental cleaning.  But of course, with pancreatic cancer, nothing is ever simple.  She never even thought to tell the dental hygienist about the chemo treatments...critical mistake.  Within a few weeks, she had a complete systemic infection brought on by a teeny-weeny little bacteria that lives in your mouth.  The cleaning had opened a small channel for the bacteria to travel into her bloodstream and what resulted was one very sick momma. 

 

She was surrounded by a host of amazing doctors and medical staff who pulled her wily-nily through that dark valley.  She spent a month in the hospital, many of those days so ill she couldn't lift her head off the pillow.  To say we were distraught wouldn't even come close.  When we were told a simple antibiotic at the time of her dental cleaning could have spared mom all this heartache we shook her heads in disbelief,  it was beyond comprehension...

 

Take note of mom's nightmare and never underestimate the power of those teeny-weeny little bacteria when you have had chemo treatments.

 

Because, you never know when they will win the fight.  It is truly a matter of life and death.

 

And this would be our greatest heartache... to know we might have been able to prevent the opportunistic infection that took mom's life 12 months into her pancreatic cancer journey.  We will never know for sure where she picked up the virulent strain of pneumonia...

 

... might it have been at our Thanksgiving gathering?  Heart-breaking to think it might have been a hug from one she loved so deeply?  Or the quick trip to the store where she insisted on tagging along?  Could that lethal germ have lingered on a shopping cart handle?  Or simply hung in the air, waiting for her frail body to breath it in?

 

We have called it The Perfect Storm.  It wrecks my heart to relive those 7 days... 

 

But it is the Banner we must raise for all who follow behind.  Respect the Space.  Know the despicable power of even one invisible bacteria to the health of the cancer warrior.  It is truly a matter of Life and Death and it is one of the most important things mom would share from her battlefield experience. 

 

Yes, she needs our hugs... But more than that, she needs her space... Give it with Love.

 

  

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The Bug Has Been Named

Waiting is over. We have a name for the pesky bacteria that has set up housekeeping in mom's bloodstream.

Streptococcus Viridans.

Not a pleasant sort of bacteria. Dr. P, the infectious disease specialist, suspects that the bacteria has lodged in one of three places. The medi-port, the lungs, or the heart. And I have listed them in the order in which we hope to find them. Obviously, the medi-port would be best. It can be easily removed with surgery, terminating the source of the bacteria problem. The lungs are a little more tricky. She already has a hazy patch in the right lung and fluid in both. Recovery would be slow, but doable. The heart is another story. And this is where mom's background (cardiac care nursing), comes in handy, sort of. I almost wish I were blissfully ignorant of the full import of having the heart involved. If the strep has set up in her heart, it will damage the heart valves, leading to weakness, fatigue, fluid build-up, shortness of breath, etc., etc., a very slippery slope downhill. In a normal, healthy person, the only option if the valves are damaged would be open-heart surgery to replace the valves. With mom's ongoing battle with cancer, we're not sure if she would be a candidate for surgery. Ok, so do you now wish you were blissfully ignorant too? Sometimes, it's just TMI (too much information). But, you've read this far, keep going.

So, that's the word from Dr. P. As he listened to her heart and lungs, he asked if she had a cardiologist she would like to use. Without skipping a beat, she said Dr.McElroy. Dr. P paused and said he didn't know him, and didn't think he practiced out of this Texas Hospital. So, mom said okay, and asked for his recommendation. Dr. P said that Dr. Jane was very good, and we both agreed with a name like that, he's the one for mom! Anyway, about 30 seconds after Dr. P left, mom started chuckling. I haven't heard her laugh in the last 5 days and it startled me, but I asked her what was so funny. And she looked at me and said, Dr. McElroy practices in Peoria, Illinois...(their old hometown.)  Oh, the funny things that happen to our minds in the midst of stress! So glad she can laugh about it. That's the mom we know and love!

So, where do we go from here? Yesterday, they pulled another blood culture from the medi-port. We are waiting on results to rule it in or out as the source of the bacteria. Tomorrow she goes in for another chest x-ray to check on her lungs. In the meantime, they are continuing to give her lasix (a diuretic) to help reduce the fluid build-up in her lungs. And then, on Monday they will be doing an echocardiogram on her heart. This is an ultrasound picture of her heart and will tell us a lot - praying that it tells us all is well, no strep live here!

For now, we are in a holding pattern. Resting, going to the potty, snoozing, going to the potty (the lasix really works!), talking, napping, and going to the potty, oh, and eating too. I have to say that this hospital has an outstanding chef - kudos to the kitchen. Mom has eaten more here than I've seen her eat in a while!

Pray with us as we enter this second week in the hospital. Mom's energy is gone, but her spirit is spunky. We pray for healing, we pray for wisdom, we pray for strength to endure what lies before us.
As I left the hospital this afternoon, a song was playing on the radio. This is what I heard:

Be still, there is a healer
His love is deeper than the sea
His mercy, it is unfailing
His arms are a fortress for the weak

Let faith arise
Let faith arise

I lift my hands to believe again
You are my refuge, You are my strength
As I pour out my heart, these things I remember
You are faithful, God, forever

 

So appropriate for me, for this moment. It's called "I lift my Hands" by Chris Tomlin. And it is a word for today. Be still. There is a healer.

Resting in Grace, Jane

BUT...

Don't you hate it when someone says "I have good news and bad news, which do you want to hear first?"

Well, Mom opted for the good news.  Heaven knows we haven't had much in the last couple of days!

And, boy!  Was it good news!  The doctor had gotten the results of her tumor marker test.  One month ago it was sitting at 174.  Today it was...

84

Hello!!!  84!!!  That is the lowest her CA19-9 tumor marker has been since she began this pancreatic cancer journey 9 months ago!!

The doctor indulged our need to high-five all around, smiles and thumbs up.  Then, after a telling pause, he said,

BUT,

I really think I hate that word... BUT ...  Our smiles froze in place as he continued.  This morning's chest x-ray indicated an increase in fluid in both her lungs.  The infection is getting worse.  And we suspected that was the case.  Mom's weakness and grogginess has been increasing steadily.  She is tired, and drained, and feels like someone flattened her with a steam roller.  Her blood pressure and oxygen saturation remain too low. Dr. Davis has ordered a CT scan of her chest/lungs and would like to bring in an infectious disease specialist to consult on her case.

The seriousness in his voice got our attention.  This is no run of the mill bacteria we're dealing with. It is some form of a gram-positive cocci baccillus:

It even stains purple, the pancreatic cancer mascot color. What a coincidence for mom.  Cancer and Cocci Baccilli.  Not too fond of either.

Suddenly the thought occured to me.  We've been so focused on beating this cancer and worried that it would take her too soon, that we never imagined a simple bacteria could be her undoing.  3 days in the hospital, and they still don't know where the nasty bug is hiding, nor exactly what antibiotic will take it out.  So, we welcome the specialist and pray he can nail this infection, and fast.

Cancer still sucks, and today we're adding gram-positive cocci baccillus to the list too.

BUT... okay, now I love that word... We are surrounded by amazing medical professionals.  Mom is in the best hands. 

Here, Susan, nurse extraordinaire, keeps tabs on mom's vitals:

 

And Matthew, sweetest man, bundles mom up for the ride down for her CT scan:

And the Hospitality/Kitchen staff bring the most delicious guest trays for all our meals.  You just can't beat this service:

So today we've had a load of Bad News... BUT (really starting to love that word!)... Her cancer is stabilizing and the low tumor marker results are the Best Good News!

Continuing to pray for returned strength to fight this infection and wisdom for the doctors as they diagnose and treat this persistent "bug."

You are all the safety net that we fall into when our footing gets shaky. So thankful you're there.

Our Love, Jane

 



From Mountain Top to Valley Low

The Polly Summer Birthday Bash 2011

A great time was had by all! It's so nice of everyone to have birthdays! A perfect occasion to get together and have fun! And we did. It was great fun watching Skylar and Autumn (our "babies") explore, play and amuse the crowd. Who needs entertainers when we have the most adorable children to keep us in stitches? Ok, so I'm partial... but, oh my, so cute!

Although, I must admit, as adults, we were all sadly lacking in baby linguistics... Skylar kept pointing to her diaper bag saying "NaPoon" (or maybe it was NaPoo)  We weren't really sure and her momma wasn't there to interpret!  So we got out every toy she had, but to no avail.

 She finally gave up and let Sami and Amanda take her to play outside.

It was half-way thru dinner when Steve had a light-bulb moment and realized she was asking for her Winnie-the-Pooh (which they had left at home...)  He shouted Winnie-the-Pooh outloud and Skylar lit up in a huge smile!

 Finally, the adults got it! We're a little slow sometimes, but if you give us enough rope, we'll eventually hang ourselves!!

And mom enjoyed it all. Here she is with the Summer Birthday Honorees:

It's wonderful to be surrounded by family. And I know that we're blessed to all be living so close. We don't take a minute of that for granted. We hug a little closer, and smile just a little more often. Mom has a beautiful framed piece in her home that speaks to me every time I see it. It says,

Our Family
is a circle of strength
and love. With every birth
and every union the circle grows.
Every joy shared adds more love.
Every crisis faced together
makes the circle
stronger.

Yesterday's Birthday Celebration simply reinforced that circle. Adding more joy and laughter to the long list of memories that make our family stronger, closer and truly grateful for one another.

Which is a good thing.  Because by Monday morning we were making a fast trip to the Emergency Room.

 
After Dad had left for work, Mom had gotten up to go the bathroom, but was too weak to get back to bed.  She slide off the toilet and lay on the bathroom floor for awhile before finally gathering enough strength to crawl back to bed.  Which is where we found her, too weak and groggy to even call for help.  I can hardly type that without feeling the icy hand of fear strangling my insides.  One of our worst nightmares to be sure.

We whisked her off to the Emergency Room where she was promptly admitted and run through a battery of tests.  She was scanned, radiographed, poked and prodded all day.  Initial diagnosis is low blood counts (need a blood transfusion), dehydration (start the saline fluids), and high white blood cell counts that indicate infection somewhere (add antibiotics).

 Oh, and did I mention adding oxygen because her oxygen saturation levels were well below normal (84-86%).  It was an all-around crummy, miserable day.

Saturday we were enjoying a lovely Birthday Dinner and by Monday she was laying in a hospital bed being offered a clear liquid diet.  A quick slide from that Beautiful Mountain Top to the Valley Below.

Yesterday, we got the results of one of mom's blood cultures.  And if I was a pessimist I'd say that things went from bad to worse...

The culture turned up positive for a bacterial infection, and probably not a good one. The preliminary culture result shows a gram-positive cocci baccillus infection. This is a broad culture, and could be any number of bacterial infections, from a staph infection to pneumonia to botulism and even tetanus (okay, that's being really pessimistic).

We are still waiting on more tests to determine exactly what we're dealing with and where it is localized.  The doctor doesn't like to speculate, but is narrowing in on her medi-port and/or her lungs. A chest x-ray yesterday showed a patchy, hazy area in her right lung. Not calling it pneumonia, yet, but will be repeating x-ray in morning.

In the meantime, the doctors have added another antibiotic to the mix. It's one of the Big Guns, Vancomycin. And the optimist in me thinks we're getting ready to turn the corner. The blood transfusion was successful and raised her hemoglobin 1.5 points. It's still in the low range, but close to normal. That did help with her energy. For about an hour... then she nose-dived with this infection. At one point last night her oxygen saturation dropped to 80%. The nurses and techs hovering over her in the dark were not impressed. I can do without that kind of excitement, thank you very much.

And I have come to some very deep philosophical conclusions about this illness.

Cancer sucks.

Hope I can say that and not offend anyone. But it's true. Just when you scratch and claw your way over one hurdle, another appears, whether you're ready to run it or not. And the other thing, it would seem that the treatment for each cancer patient is sort of trial and error. Nothing hard and fast about it at all. What works one week, fails miserably the next. Kind of like throwing darts in the dark. Hopefully, we'll hit the bulls-eye, but could just as easily hit the wall.

Okay, is that too pessimistic?

Well, I can say, without a doubt, that the one truly great thing about this whole journey are the hands and hearts that have held us through it all. Your love, support, prayers and encouragement make our day. You can't begin to imagine what it means to mom to read your notes, see your texts and emails, and get your calls. It is the one thing that puts a smile on her face. And right now, we live for each smile.

Will keep you posted with new results as we get them. Until then, hunkering down in Hospital Central,

All My Love, Jane