Home Sweet Home

Mom is finally home from the hospital!

With her trusty pink bucket by her side.  It's been a rocky few days.  Stomach has been revolting big time.  But she's made a gradual  return to even keel and hopes to continue her recuperating in her comfy recliner.

Oxygen was delivered shortly after we arrived at home.  Michael from Lincare went over the uses of her portable oxygen tank and then did a great job setting up and explaining her new oxygen concentrater (with 60 feet of tubing - she'll be able to motor all over the house.)

Finally, exhaustion overtook her and she collapsed for a much needed nap.

She has thrown up twice since coming home, and my worry meter is off the charts, but she continues to assure us that the nausea is getting better.  My gut says something is still wrong, but I will bite my tongue for the night.  She's thrilled to be back home and sleeping in her own bed. How can you argue with that after 16 days in the hospital?

Continuing to pray for her recovery and a quick return to "normal."  For a settled stomach, renewed energy and wellness, this plea remains on our lips.

May sleep bring healing,  Sweet Dreams, Jane

A Flower Blooms

The last few days have been quiet and uneventful.  Well, as uneventful as you can get in the hospital!  Mom's condition is pretty stable. Lungs are improving by baby steps.  Each day shows a slight decrease in the fluid on her lungs, and yesterday, the pulmunologist gave the thumbs up on going home soon.  BUT... she will be going home on oxygen.  Her lung function is still too low.  He said it may just take time for her lungs to completely heal.  So, another bump in the road. On the bright side, her run of i.v. antibiotics will be finished sometime Monday.  Hopefully, they'll spring her soon thereafter!

I finally left the hospital yesterday evening for a weekend back home.  Dad will be spending today and tomorrow with mom at the hospital (say a prayer).  It's a funny feeling, walking back out into the hot, sunshine and leaving the rigors of the ill behind me.  Living at the hospital is sort of like living in a vacuum.  I feel just a tad disconnected with life!

It only took a few minutes, however, to catch up with the unrelenting Texas heat wave.  Very little relief seen in that department in the past two weeks.  As I rolled out of the Dallas-Ft. Worth area north, the dry, parched pastures told the story.  Today, we mark 61 days of triple digit heat for the summer.  40 of those days were consecutive.  We had a brief shower several weeks ago that knocked the temp to 98 for a high, and then we were right back up over 100.  I like to think we're used to this heat, but, boy, this summer has been brutal.

I took the drive home slow and absorbed the impact.  This drought is taking a toll.

As I turned down the gravel lane to our place, I held my breath to see the pond.  And it wasn't pretty.  A stagnant green scum was all that was left.  The walking bridge is up high and dry. And the cracks are big enough to fall in!  Just Picasso designs in the dirt. This is the anatomy of a drought.
 

And yet, in the midst of such a scorched landscape, I came upon this beauty:

Blooming purple tendrils in a barren field.

A gift.

Tenacity and passion come together under a blazing Texas sun.  This flower is doing what it does best, regardless of the circumstances surrounding it.  Kind of like mom walking down this cancer wasteland.  Regardless of her circumstances, she still has the tenacity, the strength of will and the desire to be a thing of beauty where she is. 

And that she is and will always be to us. 

Beautiful.

Inside and Out!

A Typical Day in the Hospital

My brother, Steve, lives down in Houston and can't be here with mom during this latest crisis.  I know he hates being so far away and he calls everyday.  This morning he asked us what mom did all day in the hospital.  Was it boring?  How did we keep our sanity? And the best question, What does Dad do all day at the hospital?  So, for Steve, here's how mom spends a "typical" day in the hospital:

*Doctor Visits/Check-ups/Discussions/Orders - With 4 doctors on her case, it becomes a revolving door at times

*Nurse Interactions - roughly a hundred times a day, hanging IV fluids and antibiotics, bringing meds, doing daily assessments

*Paging Nurse because the IV alarm is going off - AGAIN

*Technician Visits to check vital signs - never at the same time as the nurse visit as that would be too easy on patient

*Phlebotimist Visits to draw blood - lots of it, daily, usually at 4am

*Radiation techs to come take her away for chest x-rays and CT scans

*Eating/Snacking/Thinking about the next meal/snack

*Watching Dad eat the Blue Bell Ice Cream that is supposed to be for the patients. Shhhhh......It keeps him happy

*Checking the view out the window - Still sunny, Still hot, Still looking at the parking garage.

*Reading

*Watching TV

*Visiting - mom's feeling better and starting to enjoy visits now

*Playing Words with Friends (Scrabble online) and beating most everyone. We were feeling sorry for her because she was so sick, not any more. It's every man/woman for themselves.

*Housekeeping Interruptions - room must be sanitized thoroughly at least once a day, usually during a meal. Excuse me? Am I in your way?

*Physical Therapy assisted walks around the floor

*Respiratory Therapists - checking on mom's oxygen support

*Sleeping/Napping/Dozing - but never more than an hour at a time because of all the aforementioned activity...

Ok, I'm tired. Can I go home now? And we wonder how the patient ever gets well...

But, seriously, mom is truly feeling better today. We're beginning to see light at the end of this long tunnel. Can't wait to post the news that she's back at home!

Until then, Enjoy a quiet, uninterrupted night of sleep. You never know when you'll find yourself at the mercy of Jill, the Nurse (don't ask.) Love to all, Jane

P.S. I'm not quite sure how to address the "sane" part of your question, Steve. I can't seem to put the words hospital and sanity together right now! Ask again in a week...

The Pink Bucket

Yesterday was such a good day. Bound to have a setback or two... And we did. Last night the nausea set in, most likely from the anesthesia. The nurses administered Zofran to help settle her stomach, but to no avail. By bedtime, she was throwing up her toenails. Katie was spending the night with Bada, and thankfully handled the situation like a pro, in other words, she didn't gag, pass out or high-tail it to the hills! Go Katie!

This morning I got a detailed briefing from Katie and a very realistic re-enactment of the whole event.

I don't think they were having so much fun last night :)  At least the bucket is a pretty pink and not bile green!  Katie, as always, tries to keep thinks fashionably accessorized!

Today, mom headed for surgery once more and had the medi-port removed.   And we headed for the waiting room once more. 

We're getting better at the waiting, but not as patient as we need to be... We do know where every vending machine

and restroom

is in this hospital.  Important information to know if you spend a lot of time here.

The good news is that surgery went well. The port is being cultured, but the doctor doesn't think they will find any bacteria since she's been on the vancomycin for a week already. We may never know exactly where the strep set up, but we are making progress nevertheless.

Heart is Clear. Check!

Medi-port is Out. Check!

Lungs - you better clear up or you're out-a-here! A little smack talk couldn't hurt....

Dr. P wants to keep her in the hospital with the iv antibiotics and oxygen at least through next Monday. Hopefully, prayerfully, the lungs will begin to clear in the next few days. The pulmunologist hasn't ruled out tapping her lungs to remove the fluid. And that sounds painful. Would really love for her lungs to get with the program on their own.

Mom sends her love and thanks to everyone who has been holding the line for her.

Your prayers, notes and love keep us going.

Sleeping well tonight, Jane

A Heart of Gold

Mom has a Heart of Gold! We all knew that - just had to convince the doctors! The TEE (trans-esophageal-echocardiogram) was a complete success. Heart and valves were healthy and strep free. What a praise! What a relief!

I feel we may be on a roll here. Believing that good news will follow her through tomorrow's surgery as well. Yes, more surgery. After doctors concluded that her heart was not harboring the bacteria, they turned their attention to the lungs and medi-port. And decided on removing the lesser of two evils, the port. Well, that's not exactly right. To clarify, they weren't going to remove her lungs. Duhhhhh... Head Slap. The doctors are thinking of tapping her lungs and removing some of the fluid, easier on patient than removing the whole lung ;-), until you see the needle they use to remove the fluid.... Anyway, the medi-port is an easy in and out procedure, so that's next on the agenda.

For those unfamiliar with a medi-port, it is a small medical device that is implanted under the skin and sewn into a large vein to make iv access much easier for those needing it longterm, i.e. chemo patients like mom. Mom's medi-port was implanted last November and has made all the blood draws and chemo treatments relatively easy and almost pain-free. The one small problem with medi-ports is their affinity to attract these tiny bacteria families. Bacteria like streptococcus viridans. So, out it goes. Doctors feel that they will be able to implant another one in a month or so. Until then, she gets poked in the arm a whole lot more often.

Continue to pray for her lung function. Chest x-ray today revealed a small decrease in the fluid, but pulmunologist is still concerned. Her oxygen saturation remains low and she has been needing supplemental oxygen around the clock.

When they wheeled her down to surgery this morning,

they took her off the oxygen, but then the surgeon wasn't quite ready so we sat in the holding room for about 20 minutes. During that time her O2 saturation dropped to 78% (anything below 90 is in the "not acceptable" range). The ensuing flashing lights and loud alarms brought nurses running! She was slapped back on oxygen faster than green grass through a goose! (That's fast.)

One other praise for the day. Doctors confirmed that the antibiotic she is on, Vancomycin, is the best drug to battle the Strep bug.

Since the doctors put her on Vancomycin almost the minute she was admitted, we are relieved to know that she has been doing battle for the whole past week. Strep is going down! The infectious disease doctor recommends a 14 day regimen of the iv Vanc, so we have just one more week to go, barring any unforseen catastrophes.

We have felt your love tangibly these past days. And we return it you tenfold.

 Love to each, Jane

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

A Day to Enjoy

Good times today!  Lunch at Pappadeaux Seafood Restaurant in Ft. Worth, then watching The Hubble Story at the IMAX Theater. Plus tons of gabbing as we drove down and back!

Here are some of our favorite moments:

Lunch with the sweetest companions!  Mom, Ruth, Pat, Katie and I

Digging into the heavenly chocolate desserts!

Getting settled for a great movie at the IMAX

Posing with the dinosaur!  It's a must for every visitor to the Ft. Worth Science Museum!

It all adds up to a Happy Mom with a Happy Heart!!

It has been an incredibly nice break from the rigors of chemo.  So refreshing to just be "normal!"  Lunching, Chocolate-Munching, Visiting, Movie-going, Laughing Normal!  What better way for us girls to spend the day?  We didn't even mention the word cancer once!

But it was on all our minds - one look at Mom's legs and you couldn't forget.  The swelling and discomfort are constant companions now. The minute she drops them below her heart level, they puff right up. So, we made her ride in the back of the car with her legs up on the seat, then found a seat in the theater with no one in front of her and propped her legs up on that too. We're not proud! We even got an usher to take us up to the top of the theater in the elevator in order to avoid the stairs. And for those who have never been to an IMAX theater - there are a lot of stairs!

And still she smiles through it all.  Hearts are full, tummies too!  And we have more partying on the agenda for tomorrow!  It's our families Big Summer Birthday Bash! Bound to be more laughter, more hugging, more fun and more merriment! And maybe more pictures :)

Can't wait!  Jane

Bring on the Rain!

All's Well! The trap remained undisturbed through the night. (Check yesterday's post for the whole story.)

Either the nightly scavenger has succombed to heat stroke (a very real possibility in this unrelenting Texas heat wave),

OR

They recognized the work of a higher intelligence (me) and slunk off to the woods to regroup....

And while they were regrouping, storm clouds were gathering!  The very real kind, with rain drops and rumbling thunder.  Hallelujah!

Today marks the last in our streak of 40 straight days of triple digit heat!  We only got up to 96, and when the front moved through this afternoon, bringing the rain, the temp dropped to 75.  Perfectly blissful!

As the first fat raindrops began to fall, the air took on the aroma of rain sizzling in a skillet.  Each drop splattered into the dust, sending up puffs of steam.  You could smell it coming!  As the storm rolled and rumbled, the rain began in earnest and we watched with grateful hearts as dust turned to sodden earth and soaked up each precious drop.

Leaves are washed clean.

Flower buds open in thanksgiving.

It has been the perfect kind of day for mom to laze around, with feet elevated, of course, and watch the rain drizzle patterns on her windows.  It's been a long drought, and this little 1/2 inch won't do much to alleviate the water shortage, but, oh, it gives hope to this parched heart.  Pancreatic cancer takes away so much, so fast, that it's easy for our hearts and spirits to dry up, to lose hope.  We begin to look and feel just like the scorched fields outside the front door.  A break in the chemo this week, a night of cards with best friends, laughter and gossip, lunch date tomorrow.  Life takes a turn for the normal and suddenly we feel better, coping easier, even forgetting at times we're in the fight for her life.  That's  a tiny trickle of hope in this desert place.  So bring on the rain!  It's exactly what we need.

Thank you, Lord. 

You are our Rain-Giver,
                           Heart-Healer,
                                   Hope-Restorer.