Obituary

Judy Carol Whitley Worrell passed away at the age of 69 on Thursday, December 19, after a courageous 22-month journey through cancer. Her loving spirit is carried on by her daughters, sons-in-law, grandchildren, her parents and brother, and especially by her adored and adoring husband, Kenneth Worrell. Inseparable from the moment they met in 1962, Judy and Ken spent 49 years of marriage in service to their country throughout their long careers in public education and the United States Air Force, respectively.

A graduate of Benvenue High School and UNC-CH, Judy started her award-winning career in teaching in Selma, Alabama, and followed Ken’s military posts in Nevada, California, New Mexico, Virginia, and Texas. During Ken’s time in Vietnam, Judy cared for her young daughters in Rocky Mount and kept him entertained with news from home through loving letters in her immaculate cursive. A much-beloved English teacher for almost four decades, Judy had an unmatched gift for words, both written and spoken in her soft North Carolina accent.

We were blessed to learn many lessons from Judy, our favorite teacher, over her 69 years:

Buy American whenever you can.

Rides are best in a Cadillac with deep leather seats and piano music in the CD player.

A proper breakfast includes a grande skinny Starbucks vanilla latte.

Naps are best when taken in your comfy burgundy leather chair in front of the television.

It’s fun to chat with strangers, whether you are in line at the grocery store, on the subway in New York City, or enjoying a nice glass of zinfandel at a picnic table in Napa Valley. New friends are everywhere, and old friends are the best.

It’s easy to make a huge difference in the life of child: Read to them, cook their favorite foods, listen to their every story, and fill their life with music. Throw your arms open wide to wrap them in a hug every time a child walks in the room. Hold them to high standards, and know they will rise to the occasion. Love them when they fall and help them get back up again.

Take time to notice the sunset and smell the roses.

Judy is survived by her beloved husband, Kenneth; their daughters Alicia (husband Scott Probasco, and daughters Caroline, Catherine and Mary Claire), Jennifer (partner Peter Mack), and Sara (husband Charles Berg, and son Macklin); her parents, Paul David and Bertha Mae Whitley; her brother, Paul R. Whitley; sister-in-law Christine Shirley Anderson; and many family members and friends in North Carolina and Texas. Judy was welcomed into Heaven with open arms by her sweet in-laws, Thurston and Gertrude Worrell.

A service to honor Judy was held at Bluebonnet Hills Funeral Home in Colleyville, Texas, at 3 PM on Monday, December 23. In lieu of flowers, memorial donations may be made to "The Judy Worrell Memorial Fund" at the American Airlines Credit Union, which will be used to establish a scholarship fund for graduates of North Richland Middle School where Judy taught for over 20 years.

Service details

The visitation to honor Judy Worrell will be this Sunday, December 22, from 2 to 4 PM at Bluebonnet Hills in Colleyville.

The service will be at Bluebonnet Hills on Monday, December 23, at 3 PM.

A private family ceremony for interment at the Dallas-Fort Worth National Cemetery will be held at a later date.

The family is requesting no flowers, please. Instead, we created a scholarship fund in Mom's name, which would make her very happy. For those who wish to donate and honor Mom, the American Airlines Credit Union is accepting memorial donations to "The Judy Worrell Memorial Fund." The credit union can be reached at (800) 533-0035 or at their flagship location:

AA Credit Union Flagship Branch
4151 Amon Carter Blvd.
Fort Worth, TX
76155

We will arrange an online form for donations as well.

Home at last

Judy Carol Whitley Worrell

September 20, 1944 - December 19, 2013

Our mom, Judy Worrell, passed away last night at 5 pm. God and all his angels lit the heavens and welcomed her home with an amazing party, starting with this sunset that darkened to a star-filled sky with a full moon and Jupiter brightly shining. We're relieved she's at peace. Although our hearts are broken, we're grateful to all of you who followed her journey here on the blog. It's been a source of comfort and strength to all of us. Your comments, emails, posts to Facebook, calls and visits have kept us going.

In lieu of flowers, we're requesting that those who wish to honor Mom consider donating to a memorial fund in her name. We will be endowing a scholarship for graduates of Mom's beloved North Richland Middle School and Richland High School.

Details on the scholarship fund, as well as on the funeral service, will be posted later today or tomorrow.

Love to you all.

Forks

Planning for the holidays in a hospice setting is not fun.  There's not a lot of joy to the world, and we see the silent night approaching.  It's an everyday schedule we have: nibbling at very small meals, struggling to get down too many pills, watching the birds when they come, and the television from sun up to sun down. Day after day.

The schedule only changes to take a step down, like finding a new problem.  Mom's skin on her right arm has somehow peeled off to the extent that even putting a bandage on it is dangerous, because peeling off baby-soft gauze takes with it another layer of skin.  Her left arm and her face are swollen at various stages through the day. Her breathing is shallow and labored, and she when she feels the need to cough, the cough lasts for hours and hours, unproductive due to her lack of energy.

It would be easy to sink into a inconsolable state, watching this decline.  And we all get there at one point or another.  Some of us get mad at little, and very big, things.  Things where we believe everyone should know better than to _____ (whatever) - but everyone isn't us.  Some of us are caught unaware by a beautiful Christmas hymn, and then can't breathe the sadness is so deep.  So we sob, hiding in the Wesley Sunday School class until an angel named Nadine comes in, looking for her coat, and ends up holding us until the shudders die away and we're left an empty shell. With yet another day ahead of being a parent to children who deserve a better parent, and a parent to a parent who doesn't deserve any of this horrible disease.  

We could do that.  Or, we could clean out the dishwasher, and talk through a routine task, and learn this:

You know, we have had that fork for a really long time.  It's the first flatwear pattern I remember us having.  

Oh, it's not the first. We have some left from when we first got married.  It's in here somewhere (digging), yep here it is!  I wonder where all the rest went.

Probably in lunchboxes over the last 49 years. Sprinkled in school cafeterias coast to coast. 

Yeah probably. 

That pattern, that's what we bought in 1969 at  Nellis Air Force Base. You don't even remember that.  

Of course I do.  Not buying the silverware, but I remember not being allowed to touch slot machines in the grocery store. 

That spoon - the grapefruit spoon?  It's from Grandma Worrell (dad's mother). 

No, it's not, but she had grapefruit spoons in her drawer too.

And, she did love to eat grapefruit. 

That set?  That's what I bought from the Pottery Barn in Williamsburg, Virginia, before I moved to Turkey.  

No dad, it's not the Pottery Barn. It's just "The Williamsburg Pottery" and there's a big difference.  :)

After that set, we got this new set that your mother really liked.  It's a good thing we have all these forks because we sure do use a lot of them.  

If I had remembered to turn the dishwasher on the past 3 days, we'd have plenty of clean forks instead of a load of dirty ones.

You know your mother's silver set?  She saved her money from when she was a school bus driver in high school to buy that silver.
(I don't think I ever knew that.)

I am thankful for dishwashers and too many forks.  For the many wine glasses I've broken over the past several months, for the meals shared, and for the tears shed with my dad.  For the friends that reach out, for the Christmas cards that are coming in and bringing memories and bits of smiles to Dad's face.   For my angel Nadine who helped me breathe.

For another day.  

Giving Thanks

This was the first year in my life no one was up before 7am basting the turkey and no one peeled potatoes.  No one bought a bag of Pepperidge Farms stuffing mix.  Not to let everything go, I took a few hours in the kitchen with Catherine and Mary Claire making pies and sides.  Fun memories at a slower pace.

We decided this year that our time was better spent with Mom rather than scheduling oven timer slots, and heating up a gourmet take-out  meal was going to be okay.  Our goal was to have dinner all heated up by halftime of the Cowboys game, and everyone agreed the turkey breast was as good as any whole bird we'd ever cooked.  It was an emotional choice to buy rather than make, but once done it was as if a load had been lifted and we were given the gift of time.

Time is the most important thing. Mom has had time with her family this week to watch the Wizard of Oz, the Grinch, and the Garth Brooks special with her little ones...and it's wonderful to see how she responds to the music we all know so well.  Music brings movement to mom's room, whether it's soothing and brings forth a gentle hand wave, or a foot tapping beat of Don McLean's American Pie.  Mom hums to all songs, and the music takes us all to easier days for just a few minutes.

Everyone in our family knows American Pie. An unexpected blessing today was when Dad pulled up the song on his phone, and we all sang to it during a commercial break for Garth. It was a wonderful few minutes.

We're thankful to have these minutes. They are rarer these days, but they're still there.

A few thoughts as the weather turns cold

In this short Life that only lasts an hour
How much - how little - is within our power
Emily Dickinson

One of the many amazing things about being a parent is watching your child grow. The growing itself is imperceptible; you can see your child every day, watch him play for hours, and you will not see him suddenly stand a half inch taller or flex his toes on a now-longer foot. The changes in a growing child happen slowly, almost behind the scenes. They happen over weeks and months, and they happen at night while you sleep. You notice the changes when your child's too-long pants are now too short, or he stops asking you to turn on the faucet because now he can reach it himself. These little changes are the guideposts you see along your child's journey from an infant to an adult. They're miraculous, all of them, and wonderful to see. I consider myself a pragmatic person in most things, but in parenting, I am a wholehearted sentimentalist. I get teary with both pride and sadness at these changes in my growing child.

Now I'm facing the death of a parent, and not just any parent, but my mother. (It's not only my loss, of course; we're all losing her. Still, the intense fear and grief make me feel alone.) Hers was the first voice I ever heard, and I can recall her laugh in an instant despite having heard it so little in well over a year. I moved away in 1999 and laughed when Mom said I would probably never come home. She was right, of course, as she was about most things. Sometimes I missed home. Even before she got sick, I could be moved to homesick tears by the mere memory of how her hug felt, or the scent of home on a Christmas throw she once used as padding in a huge box full of presents shipped to me.

Now I'm "home" frequently to contribute in this constant vigil of caregiving we've been managing for 21 excruciating months.  Each time I arrive home, I see unwelcome changes in Mom. Like growing up, apparently this slow process of dying from cancer has guideposts, too. Three weeks passed since my last visit, and now Mom is suffering from edema in her face, neck and left arm. The nurse isn't sure of the cause; it could be fluid moved down from her brain, or it could be fluid accumulating because she is barely moving. The body has to move to use energy and distribute the fluid taken in from food and drink. Without moving, the body stops processing effectively; fluid pools in the skin. It's painful. Her skin is tight, shiny, and blistered. We raised her arm on several pillows, and it seems to be helping slowly. As usual, there's nothing else we can do.

Mom's cough worsened, too. Some unknown trigger causes her usual cough to get worse, and she has so little strength; she can't do the big belly cough needed to clear it. Instead, she coughs repeatedly and unproductively, and she sighs with exhaustion between the spells. Tonight the coughing spell grew worse again, and we tried cough drops, Mucinex, wet heat - nothing helped. In desperation, I mixed a strong hot toddy and coaxed her to drink it. She grimaced and declared it "nasty", which made me happy because at least her speech was clear. Incredibly, the hot toddy seems to have worked - her coughing stopped.


Unlike in the movies, there is no doctor here predicting how much time we have left with Mom. It's unknowable, and we watch these guideposts closely as though counting them will give us the answer. It doesn't, of course. It only shows the progression of the disease along this terrible road that none of us wants to travel.

---

Now it is fall
By Edith Södergran

when all the golden birds
fly home across the blue deep water;
On shore I sit rapt in its scattering
                                                        glitter;
departure rustles through the trees.
This farewell is vast and separation draws close,
but reunion, that also is certain.

My head on my arm I fall asleep easily.
On my eyes a mother’s breath,
from her mouth to my heart:
sleep, child, and dream now the sun is gone.—

Shifting Fluids

Last Thursday through Saturday, Mom had a really loose rattly cough, and with her weakened state, she just couldn't cough anywhere close to "productively" so it was a rough few days.  We tried lemon/honey throat drops (yuck!), lemon ginger tea (yum), light pounding on her back (feels good), Mucinex (another pill?!), and finally good old fashioned Luden's original menthol.  Whether it was the  $0.96 Luden's purchase, or time, something worked and the cough has ceased. Whew. :)

Equally stressful as the cough, all last week Mom's words were, conservatively, 90% not intelligible.  Yes and no questions work, but many times as she was trying to communicate an independent thought, it came as out as numbers.  65, 12, 21, 18 18 18 18. I wish I had a decoder ring to figure out what all those meant.  I'm sure it would be fascinating. Maybe 18 means "I'm so frustrated I can't get this word out!"

Yesterday mom had a friend from school stop by, she brought a wonderful poem from her son, and together they reminisced about when he was in mom's class, the things she must have told him, the things he obviously remembers...aren't we all like that with a favorite teacher?  It's a rare gift to have a teacher who reaches students so that 10, 15? years later, they still think about the teacher and remember specific scenes from class, basketball games, hallway conversations. The visit was warm and wonderful.

Today, Mom seems to be taking her energy from yesterday's visit an channeling it in to clear speech.  The brain is a wondrous thing...  This can only be explained by the tumor growth, compounded by swelling and fluid buildup. The tumor stays where it is, but the fluid is just that, it moves. So last week when the fluid was (appeared to have been) sitting on the part of her brain that controls speech...today it's not. So we've had these delights.

• "I thought said you did something with your hair."  (Mom looking puzzled, and she is the one who ever tells the truth about how bad my hair frequently looks. This is my mom's real speech!)
• "Great job! You did very well. This is good." (After looking --reading??-- Mary Claire's report card.)
• "He is so funny. He knows what he is talking about! And that man is just plain crazy." (While watching a funny segment on an afternoon talk show.)

And maybe most wonderful, last night during the Packers/Vikings game there was an ad for National Car Rental. After the ad ran, she said quite clearly, "I wish I could go."  And then this is what happened:

Where would you go?

I would go to (gibberish) wine (gibberish)   

Where would you stay?

(gibberish) Bellag, B...(gibberish) 

Dad walks in   Are you saying "Villagio?"  

YES!

What would you drink? 

3, (gibberish), 103

103 glasses of wine?

YES!  

We followed that with the names of Mom and Dad's favorite wineries.  They both enjoyed that conversation, it was a sweet trip down memory lane. We talked about where they would eat, how much they loved the barn doors, how some wineries are too touristy but worth a novice visit, how much they loved the tastings and canapes at Schramsberg. 

The tumor is still there, but the fluid and swelling has apparently shifted, and has given us some relief from the darkness.  It has gifted us a glimpse back to what has been a wonderful part of life. 

Football Sunday

As I've written several times before, football is loved in our family. Friday night lights in high school, college and pro games on weekends.  There's always the noise of the sack, the celebration of the score, the frustration at the flags, the way Romo always runs the play clock down. Seriously, the Cowboys are hard to love but we love them anyway.

With Mom's conditioning worsening, football isn't quite as much fun.  She slept through all of today's games except for the hour or so she and Dad had dinner and watched the Indy-Denver match up.  Her speech is frequently very difficult to understand almost all of the time, and she is frustrated at herself for not getting the words out, and at us for guessing wrong.  I find myself agreeing to a lot of things when I think I got the gist, which is an odd and not great feeling.  

A bright spot:  Mom and Dad enjoyed a visit with long-time friends last week as they stopped by on their way through town.  When we all lived far from our extended families, we spent Thanksgiving and Mothers' Day with them.  Sharing pictures and memories from the 1970's was very special. 

The past few weeks, Dad has grilled some great steaks and of course the good, and occasionally outstanding, wines are always open.  Mary Claire had 2 sleepovers at Grandma and Granddaddy's house this weekend, the first in 18 months, which she loved, and she read her new books to Grandma, which was wonderful time for both of them.  Caroline has shared the fun of her success at her debate tournaments and Catherine the woes of her broken French Horn and her fun at church....all in the way that loving grandchildren do.  Despite the sadness of what's happening in this house, the girls are still growing up and they are sharing as much of that as they can with their grandparents.  They bring welcome little bursts of energy and good cheer.

Still knowing what is happening here is sad, and day to day it's just plain hard.

Thank you!

Mom had a nice birthday this year - thank you to all her friends who stopped by to share cake, stories, laughs, and hugs. Thanks to all of you who sent birthday cards, they have filled up the desk in her room and 2 have even migrated to being tucked into the picture frame, because the desk didn't have enough room. It's wonderful to see the outpouring of love and greetings to Mom, she enjoyed reading notes and thinking about each of you. 

Mom is on hospice care now. She was able to retain the same home care nurse she's had for the last 15 months or so, and that has made the transition to hospice smooth. It's heartbreaking and sad, but it's a slow transition.  The past few weeks she's been resting comfortably, keeping her eyes closed most of the time, but enjoying listening to her tv shows. She's eating well, and the skin tears and bruises from her last hospital visit are mostly healed.  She's not in pain, and doesn't need pain medication, and for that we are very thankful.

For the past several weeks we've had a new daytime caregiver at the house, she is strong and energetic. She looks for ways around the house to help with when Mom is sleeping, and she is a pleasant and confident companion when Mom is awake.  It is a blessing to have her, along with Mom's nurse, on our team. 

This weekend, Mom's brother Ricky and niece Erin are here for a visit. Mom had an excellent day yesterday looking forward to seeing them!  The next few days will be energizing and fun as they share stories and memories together.  

Thanks again for your thoughts and support. 

ps... Dad's birthday is in October if you can help flood the house with more birthday cards :)

Birthday Wishes

Short notice, I know, but Mom's birthday is coming up very shortly. She would love to hear from her friends. If you need her address, please email me and I'll send it to you right away.

Mom's enjoying the company of all 3 daughters and all 4 grandchildren this week, is being loved on and coddled by everyone. Maybe the best present she's received so far is the gift of no more finger sticks for blood sugar and no more insulin shots -- hooray for small victories!

Humor above Stress

It's easy to walk into Mom and Dad's house with a smile and a spring in my step because I know my family and I are so lucky to live about 100 steps from door to door from them. Maybe not even that far. We have lots of fun stories to share from the girls' first few days at school, soccer practices, band practice, last minute school physicals, typical work day humor.

It's hard to leave Mom and Dad's house, even with a plodding step, because I want so badly to help ease the emotional stress, trying to maintain a balance of cheerful chatter, looking for a receptive, understanding, or encouraging expression, knowing when to shut up, knowing what will work best for dinner...wondering if there's room in the closet for the nonstop pile of laundry...that's part of the hard part. I always feel like I didn't do enough, and all the guilt of balancing the 2 houses on opposite sides of the street is sometimes almost crushing. 

But, in between, I get to see little joys, like this:

Yesterday, I was helping Dad lift mom up onto her wedge pillow so she could see the TV better. She didn't understand what we were doing, and I was telling some story about who knows what...I'm sure I was talking too fast as usual.  Mom got very irritated and said "What are you doing?", which caught me off guard so I stopped my story and told her we were just going to move her up in bed. She was frustrated with me, and likely with just being stuck in bed anyway, but particularly at my noisiness.  Then, Dad said he was moving her so he could kiss her easily, which she immediately softened towards.  And she replied, clear as day, "Well okay, but you know that has absolutely nothing to do with it!" 

How does someone with a brain tumor, who can barely verbally communicate, make me and Dad laugh, and release the tension just at the right time?  We are thankful for moments like that, they are rare but cherished.

Back to the comfort of home

Mom was discharged from the hospital yesterday with another long list of prescriptions and instructions, and with news about her tumor. She had an MRI Monday evening which has shown the tumor has grown and passed the brain's midline, and the tumor has bleeding inside it.

Due to the bleeding, mom doesn't qualify for Avastin, one of the 2 available treatments, as it would cause more bleeding.  Due to her delicate condition, overall weakness and recurrent infections, she doesn't currently qualify for chemotherapy either, and that's the only other treatment for glioblastoma that exists.

Even if she did qualify, neither of these options will make the tumor go away, and both of these options would trigger significant side effects which would lessen Mom's quality of life.  That's the bad news.

What do we do now?  We can work on Mom's current quality of life, do our best to eliminate the infection, and help her build strength. If she regains strength and overall "health" then the 2 treatment options will be available.  That's the good news.

At home, we are trying to find smiles in little things:  mom's instinctive ability to twirl spaghetti noodles with a fork, her hands unbruised thanks to the talent of an excellent IV nurse, her laughter at my error throwing out 2 perfectly good bottles of coffee creamer. Mom is enjoying Dad's bacon for breakfast, it's so much better than hospital bacon.  We've been home not even 18 hours and already we've had 2 nurses visit, and mom's caretaker showed up right on time this morning.

Not knowing what will happen is terribly stressful, I can't deny that, but knowing that Mom and Dad can be together in their home surrounded by helpful caregivers and family is comforting.

Thanks to everyone for your positive thoughts and prayers.

Hospital update

Mom was admitted last Thursday again to the hospital, and after an entire afternoon/evening in the ER, was wheeled up to her room by none other than the head of the department...who has by now gotten to know Mom and Dad pretty well. 

Mom had the normal bloodwork done, and a CT scan.  Bloodwork showed an infection which she's taking an antibiotic to fight.  The CT scan shows changes. The tumor, or the swelling caused by the tumor, or maybe both, has crossed the midline of her brain, which is a turn for the worse.  The tumor that started on the upper left center, now has spread. 

At this point, treatment options are incredibly limited, and the best treatment we can give is probably having a warm Starbucks skinny vanilla latte at hand in the morning, a chilled red raspberry flavored sparkling water throughout the afternoon, and plenty of kleenex at mom's left hand to cover her fairly constant coughing.  She likes holding onto her kleenex.

We are waiting today to see mom's neurooncologist, who hopefully has a great medical plan for treatment, but realistically we know that is unlikely.  We expect to learn about plans to go home instead.

Please no calls at this time, we'll update the blog when we have more information.  Email is good but forgive tardy replies please.  Thanks.

 

A song for Mom

There's a song in my heart for Mom today. It's been a rough few weeks at home. Here's hoping and praying that this sunny Monday will bring the start of a new week and new energy for Mom and Dad.

Everything went wrong,
And the whole day long
I’d feel so blue.
For the longest while
I’d forget to smile,
Then I met you.
Now that my blue days have passed,
Now that I’ve found you at last -

I’ll be loving you always
With a love that’s true always.
When the things you’ve planned
Need a helping hand,
I will understand always.
Always.

Days may not be fair always,
That’s when I’ll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

I’ll be loving you, oh always
With a love that’s true always.
When the things you’ve planned
Need a helping hand,
I will understand always.
Always.

Days may not be fair always,
That’s when I’ll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Not for just an hour,
Not for just a day,
Not for just a year,
But always.

(Always, by Irving Berlin)

HGTV, birds, and fish

With cable tv installed in mom's room, she's been doing a lot of shopping...house shopping...redecorating, etc.  It's a great diversion and since she's not yet able to get into her wheelchair, we're all enjoying the Property Brothers, Love it or List it, and the day-long shows about the most unique homes, pools, kitchens, whatever, in the world.  She loves it!

The birds have returned to the bird feeder - after about a month hiatus, the blue jay, the cardinals, and the little finches are going through 2-3 refills a week. This bring Mom great joy that her friends have returned.  Who knows where they have been, we are sure glad they are back this weekend.

We have discovered a new little take out place that's good for a hot dinner. The little Taco Bell-turned Italian-turned German restaurant close by is now a seafood restaurant...which I was very suspicious about at first. Nothing survives in that former Taco Bell shell of a building.  But...this place is great!  Very fresh fish and shrimp, onion-free hush puppies, which we've never found outside North Carolina.  They do run out of things, today they ran out of chicken for a sandwich, last time they ran out of metal utensils and macaroni and cheese, but they have plenty of energy and big smiles when complimented on their food.  I hope everyone pays a visit to O'Frills Restaurant.  (not a fancy place or a fancy website, but good food.)

Mom is still battling an infection, which is so frustrating to her, preventing her from making progress in therapy because her energy is just zapped. It seems this infection has been continuing since early May. It affects her quality of life much more than her tumor and its swelling does.  The last doctor's appointment confirmed there has been some minimal grown in the tumor, and associated swelling with it. Neither of these, though, are to blame as much as the ever-present infection.

Mom has had several special visitors this past month, family and friends from around the country whose paths have brought them through or to the DFW area. These visits are so important to both Mom and Dad.  If you are around and have a few minutes to visit, it is energizing to everyone.  Mom's speech is sometimes pretty difficult but she understands what she hears perfectly - she just can't always communicate back with ease.  Her illness hasn't hurt her friendliness, warmth and concern for others, though. She loves her family and friends.

Home!

Very brief update - Mom is home!  After having all IVs removed, down to just pills which she can take at home, and generally feeling back to "normal" Mom was discharged from the hospital and is back home.

Nice safe, cool ride from the stretcher transport service, and she's back home where we all wanted her to be.

Yeah!

Hospital Update

Day 3 in the hospital, several bags of IV antibiotics, oxygen to help with breathing, MRI, CT scan, blood work, etc...  Mom has several new skin tears and bruises from being moved from ambulance to stretcher, from stretcher to bed, and from IV placement and multiple blood draws. The steroids she has been on have made her skin paper thin, and every little bump causes a bruise. And bruises take weeks to heal.

The good thing about the IV is that the antibiotics have done a super job of addressing the infection - wherever the infection was living. Since being on them for 2 full days, Mom's speech is significantly improved, although still not where she wants it to be. Her arm/leg swelling is down, and she can lift her right arm completely above her head. She can feed herself with both hands, and she can even cross her fingers. :) 

That's a trick I haven't seen in a very long time. She and Mary Claire were crossing fingers for health last night.  We have fingers crossed that this hospital stay will be brief and she'll be home and well very soon!

Finding the right fix

Mom has been out of the hospital for several weeks now, but has never really recovered back to her previous state of strength and health. Some days have been better than others but she's not been in her wheelchair for at least a month, and her speech comes and goes.

This past Monday and Tuesday were good days, strength seemed to be on the strong side, spirits were high, and plans were to work towards a wheelchair attempt on Friday with physical therapy. However, this persistent infection she cannot get rid of had other plans. On Wednesday her speech declined significantly, her blood pressure was up, and her right hand wasn't moving well - and she slept almost all day.  Thursday, her speech was 90% garbled, other symptoms worse as well, plus she had a headache and swelling of her right arm, hand and face.  Enough of a decline to require a trip back to the emergency room.

Good people work at St. Paul's and while it's tiring to be in the ER for 6 hours, they take excellent care of mom.  She had an several tests run, and none indicated significant problems.  She was given IV antibiotics which she responded well to, and by the time she was admitted to a room, with Dad on a reclining chair, she was speaking much better and moving her arm a bit.

One bad thing - they can't put an IV in her swollen arm, so it's in her left (stronger) arm, right at the elbow crease, so she can't move that arm either! It might work out well enough because she's very motivated to feed herself, and she tried hard to eat a roll by herself last night.  (It's the tiny little successes that make us all feel better.)   The chicken fried steak, green beans, and potatoes from Texas Roadhouse take out were so appreciated - thank you to Scott and Mary Claire for being the cross-town delivery service.  :)

Don't forget dessert.

Lessons learned from Father's Day....

background...Mom was hospitalized for a few days in late May for an infection and muscle pain.  She has been home 2 weeks now but is still most comfortable flat on her back. Sitting up has painful for more than a few minutes at a time, but she is gaining a few additional minutes of comfort and confidence every other day or so.

Mom always bakes Dad a coconut pie for his birthday and for Father's Day. Many years in the past I've made it, but this year I completely forgot to put it on the grocery list, and if in my scant 45 minute, once every 3 weeks grocery dash, I don't remember, then it just doesn't get done.

We celebrated Dad's Father's Day on Saturday evening with blue cheese burgers, crash potatoes from the Pioneer Woman blog, an avocado and roasted corn salad, and garden-fresh tomatoes with basil and some steamed squash. It was really delicious, and no one was hungry for dessert afterwards.  It was a nice Father's Day dinner.

Sunday after church I headed back over to their house so Dad could do the 2nd half of his weekly grocery run.  Mom was very sad, emotional not being able to see her Dad in North Carolina. As mom and I talked throughout the early afternoon, I realized it was also because Dad didn't get a coconut pie. Uh oh. Bad daughter moment.

Son in law and foodtv.com to the rescue.  A quick run for buttermilk, coconut and a pie shell, delivered to mom's doorstep, and we had a freshly baked coconut pie done before Dad returned from her errands.  The day was saved, and thankfully, ended on a sweet note!

More seriously, mom still has some sort of infection, but her speech has measurably improved and she is able to sit up on the side of the bed again for her meals now.  Hopefully the infection clears itself, otherwise we go back to an antibiotic regimen, and every time we do that it's 3 steps backwards with associated side effects, with no certainty the infection will clear.

Continued prayers and notes of encouragement to Mom and Dad are welcome and appreciated! 

Hopefully a non-update

Mom's been doing well the past several weeks, continuing to build strength and getting up in her wheelchair a few times a week when the physical therapist is here. She's been a willing participant in spelling and reading homework, she's helped straighten out yarn when a project goes awry, and she's dried many, many dishes from the comfort of the wedge pillow and her bed. She's watched a bevy of birds enjoy the feeder hanging outside her window, including a bold blue jay and a pair of cardinals.  And she loves the colorful flowers outside her window.

Today, however, she is not feeling well, with a headache, mixed up language and general weakness on her right side. We're hopeful this is just an infection again mimicking symptoms of tumor growth, and test results will confirm this. But it's a holiday weekend, so results may be slow in coming. It might be a long few days.

Prayers are appreciated.  

My call home

"Learn from the past, set vivid, detailed goals for the future, and live in the only moment of time over which you have any control: now."
- Denis Waitley

I called home earlier this week and was able to do some video chatting with Mom and Dad thanks to the wonders of Facetime on Mom's iPad. It's not easy living a few states and timezones away from the family; by the time I leave work in the evening, Mom is ready for bed and very tired. When she's tired, the words don't come easily, and phone conversations are tough. Often I make it home by 7 pm, but that's 9 pm Central, and I know Mom is sleepy (or sleeping) by then.

Video chats work a little better, so she can see her goofy and lovable grandson and hear his improvised knock-knock jokes. This time I tried to entertain Mom with stories from California, including a recent jaunt up to Napa Valley with a group of colleagues visiting Stanford, where I work. The wineries we visited were unfamiliar to Mom and Dad, but they recognized the general location and were amused, I think, by how awed I was at the experience.

Mom smiled and nodded, resolute. "Okay, I'm ready. Let's go now. Let's just move."

Dad and Mom on Father's Day, 2011

It's great to see her crack a joke - even make a wish for the future. Maybe she won't end up moving to California - who knows, maybe she will! - but it's nice to see her want to get back to her dreams and working towards them. She works hard in physical therapy, as much as she can from the bed. Dad says she's lifting heavier weights each day, and she did 100 arm curls that day. (100! Wow!) She's progressed to sitting up 4-5 times each day as well, which is tiring but helps to rebuild those atrophied core muscles that are so important for sitting up comfortably. Rebuild is the key word: she's broken down, but not destroyed. She's rebuilding.

Lately I've been reading success stories of glioblastoma survivors (like this one and this one), and I believe more than ever that hope, faith and work - endless work and effort - are keys to rebuilding Mom's life. She'll never be exactly on the path she planned, but it doesn't matter. The path she's on is what we'll take, as long as she's walking it with us.

Love you, Mom.

A Day in the Life

(2 days prior, 9pm) Mom's caretaker, Cindy, calls, she is sick with a virus. Quarantined away from Mom until all symptoms are gone.  Monday was a 'normal' day minus the Cindy.

Today, 8am, slowly waking up, talking about the horse who paints pictures on the Today show. Channel 5 is the morning show of choice for many years, ever since whoever hosted previous to Bryant Gumbel.  And the only reason we know who Greg Gumbel is, even though now we've been watching him more years than we ever watched his brother. Coffee in a Tervis Tumbler with half a Splenda and a healthy dose of vanilla cream.  Dad takes the other half of the Splenda, a half-of-the-bottom-of-the-cup half and half, plus a small splash of vanilla cream, and served in the black and gold F16 coffee cup.

9am, breakfast is a cheese omelette, leftover filet mignon and sauteed mushrooms from dinner the night before. A sliced tomato, warmed, with salt and parmesan cheese.  2 pieces of crispy thick slicked bacon. A gourmet breakfast every day in this house.

10am, 11am, 12noon, various mindless TV shows, and coffee refills.  Incredibly boring.  Mindless.

1pm  When the news type shows run out, then we switch to COZI tv which appears to be programming from the 1970's and earlier. Today there was an early Bing Crosby pic on, and something that must have been filmed the first year colored film was available. And a funky show with a super young Bill Cosby. So young I didn't even recognize him.

2pm YEAH a call from a friend who wants to visit.

230pm Friends show up and stay a very respectful 15 minutes or so.  Grandchildren, as expected from the group of new retirees, were the topic, with much cooing. Everyone loves a new baby and we celebrate even though we can't hold the sweet newborn baby boy! Facebook pictures and proud Grandma stories are just about as good. :)

4pm Grandchildren that belong in this house, plus a 3rd grade friend, show up and say hi - Mom's speech is 100% perfect, "It's nice to meet you!" she says to the little girl who has been prepped what to expect, and who in her own right is an especially gracious guest.

5pm Finishing some really bad TV shows

6pm remembering the news is on TV

7pm remembering we forgot to plan dinner

730pm, giving thanks for a son in law who doesn't mind running for take out, and for grandchildren who are flexible minute by minute, who are trying to find their way but frequently live in a not-by-choice one parent household...

830pm drying the first of 3 sets of dishes that are washed by hand, because there's just too few to run the dishwasher.

9pm enjoying the NCI type shows on TV, and then finally done.

I have immense respect for my father who holds this schedule with my mother every day.  I have no words to express the love for my mother who, while she desperately wishes for a "normal" life, never complains about her "new normal."

I am blessed.  While emotional and falling down tired from all of the above plus a full work day from their dining room table, I got to be here today, and I am blessed.  I am thankful for my Mom and Dad, for their friends, for my family and friends.  For my children's friends. Today required some hard choices, and I rest well knowing I made the right ones.

Visiting Hours

Visiting hours are an interesting topic, because although Mom is feeling physically better, and her brain is at a good state, she's still not up to lengthy or frequent visits.  She does love and miss all her friends, though.

Tonya stopped by for about 20 minutes on Sunday, which was perfect. And today, April came for just a little bit.  These visits invigorate Mom and make her feel so good!

When you're in our part of town and are thinking of stopping by, please call Mom and Dad, or text me or Dad (if you need phone contacts, please email me at alicia.probasco@gmail.com).  If Mom doesn't have a slew of therapists scheduled, she would love to have some afternoon company. After 5:30pm is best Monday - Friday, and after 12:00pm on Saturday and Sunday.

Thank you all for your continued thoughts and prayers!

A perfect marriage

Just returned from several days in Texas with Mom and Daddy and my sweet boy, Macklin. We had a great visit; I'll try to post more details soon. In the meantime, I saw this quote and thought it perfectly summed up what we've all witnessed over the last year (or 40+ years):

A "perfect marriage" is just two imperfect people who refuse to give up on each other.

We should all be as loving - and as committed - as my parents are to one another. What amazing role models.

One Month Later...

Mom's strength is continuing to increase daily.  She is doing well with her therapy, and is eating all her meals on the side of the bed, and can sit up for around 15 minutes at a time, several times a day.  Some days are better than others, of course, but what's important is that the strength hasn't waned despite little setbacks here and there.  This upcoming week, with luck and hard work she may be able to stand.  We are all looking forward to that!  

Mom and Mary Claire enjoyed reading a book together today. Mary Claire was reading to Mom who was listening carefully, while occasionally stopping her to check the weather on the news, and when a story came on about what foods cause headaches...

But then she turned over and faced MC.  I put pillow behind her back, and she leaned more towards MC.  MC said, "Grandma, do you want your glasses?" which of course, she did.  She was wanting to read along with MC. 

After a few pages of trying to follow the little speed reader, Mom was getting lost in the text.  I asked MC to slow down and read together with Mom. Not an easy task for the former theater girl who loves to be lightening quick, mostly accurate, and very expressive in her reading.  But when she figured out that Mom wanted to read along with her, and that Mom is quite good at the conversational words, but not so good at words like hypothesis and situation, she did slow down.  And they read a few pages together, and they both got tired and decided to brush and braid MC's hair.  Typical Grandma kind of stuff.

We've had a good weekend. Dad's Aunt Gladys Lancaster, his mother's sister in law, called and they had a great visit remembering our times together in Virginia, and talking about what all the children and grandchildren are doing these days.  Then, Mom and Dad called Dad's sister Christine, and they had a nice chat as well.  

This has made Mom talk about her childhood tonight, she is saying she didn't have much, but she did have a lot.  Which I think is probably true, and I'm glad that even though the expressive words don't com easy, she is able to communicate important thoughts with clarity.  

Home!

Thankful today that Mom was well enough to head home!  She and Dad are glad to be back at home tonight.

After some anxious hours in the emergency room last Wednesday, followed by a night on the transplant floor at the hospital (because none of the rooms on the cancer floor were open), Mom is feeling much better. The problem remains, but with far less acute pain. The doctors have confirmed she had a lung infection, which combined with a stomach/gut upset, caused severe pain. 

I imagine maybe it felt like being pregnant and having a full term baby pressing on Mom's lungs with every breath. Many of us can relate to that feeling, but with a baby you plan on a happy ending, and you normally have a date when you know you'll feel better, but with the stomach issues Mom has had, you never really know when they will pop up.  Suffice to say I'm not making spaghetti and meatballs with artichoke marinara sauce again for her dinner....not that that's what set it off, but it was the last thing she ate before this episode.  So, no more of that.  We've been grasping at any ideas of root cause, none are really completely to blame.  

I think Dad and I have this hospital thing down now.  He made it through the week with Mom in one of the smallest rooms in the hospital, with a fold out bed for himself, and one small overnight bag for the 2 of them. Daily trips with the paper and mail, and stories of work, girls' activities, commentary on TV shows we watched with mom helped pass the time.  Thank goodness for hospital wifi, we each can work a few hours at a time as well.  The nurses, techs, and therapists all know Dad by name.  Sad that it's a homey place now but when you find yourself planning Super Bowl party menus with the patient care tech, it's really a comforting feeling.  (The wonderful tech Penny is adding queso to her party, I'm adding her whoopie pies to mine....)

With Mom back at home, her home health care will resume now. She's excited to get back into the therapy, as the days/weeks prior to this setback she had really been making great progress on getting stronger.  We feel like in a few days she'll be back on track to that point. Prayers are appreciated in that respect.  It would be so awesome if she could get into the kitchen and help  make the snacks, and  watch the Super Bowl with surround sound and a big screen.   

Hospital update

Good morning friends,

Mom has been hospitalized now since Wednesday evening and despite many tests they doctors have not been able to diagnose or effectively treat her pain.  She is in a nice room and dad has a roll-away bed, never leaving her side.

Prayers for both of them are appreciated as they try to work through this latest unwelcome shift in condition.

Day to Day, Good and Bad

Last week Mom started sitting up more and more, she worked herself up to 2.5 hours over the course of several good attempts on Saturday.  She took great care when drying dishes I brought her in a big plastic bowl, and handled the super sharp knives in a good way, putting them in a cup before handing them back to me.  She enjoyed Dad's awesome steaks and potatoes, and we spent a lot of time just hanging out.

Monday, Mom enjoyed the day of tv watching all the inauguration festivities. And she caught up on Downton Abbey via pbs.org because she and Dad forgot to watch it Sunday night.   

Tuesday, when the speech therapist was at the house, Mom signed her name 3 separate times for the first time since last February.  Her handwriting was distinctly her own, shaky, but hers!  It was a breakthrough that she and all of us were very proud of.

Wednesday morning, the occupational therapist asked Mom if she brushed her teeth by herself.  Mom said sometimes.  The OT said why only sometimes, and Mom said because sometimes she was lazy.  It took the OT several minutes to stop laughing!  We all know Mom hasn't been lazy a day in her life.

Wednesday throughout the day Mom experienced pains indicative of indigestion, and took the normal meds for that. They were not effective.

Wednesday evening, sitting up for dinner, Mom experienced severe sharp chest pains and her blood pressure was high.  The home care nurse advised Dad to call 911, which he did, and so Mom is currently in the ER having a bevy of tests run.  No diagnosis as of now, but she is being admitted to the hospital and we will know more soon, and will update the blog when we can.  

Thanks for your prayers, letters, calls, hugs, pictures (I'll post some good stories with pics one day), and most of all your friendship.  It is a great comfort to Mom and to all of us.

...and a Happy New Year!

Apologies for not updating the blog for quite a while. With the buzz of the holidays and the adjustments as Mom acclimated to being back home (as of December 22) we were caught up in real life instead of online life.  The support received via Christmas cards put us all in a joyful mood, and brought Mom and Dad many good walks down memory lane with all of you.  I've been feeling more than a tad guilty for not providing an update to Mom and Dad's loyal friends.  So here you go. :)

With the latest few weeks at the hospital and in rehab, Mom didn't make the physical progress she had wanted or expected, but she loved her room with the view of the Dallas skyline, and she enjoyed seeing her many nurses and therapists from her extended stay early this summer.  What was accomplished was recovery from whatever infection she had. So a tad disappointing, to be honest.

However, upon returning home, Mom and Dad were greeted with a partially decorated house and yard!  Two presents under the tree!  We tried to make it look like Christmas as much as physically possible.  Thank goodness for the ever present helpful hands of a little one who loves to decorate.

Shortly after Mom was settled back into her room at home, the heavy holiday traffic commenced.  We had a bustling house for the holidays, grandchildren running amok, and certainly more food than anyone needed to eat.  I'll be honest and say that Mom's emotions were running high, because she's the one who always gets Christmas Eve hors d'oeuvres dinner prepared, she's the one who sets out the fancy china, or even the fancy paper plates...  We did our best to stick to as many traditions as we could, but with Mom not able to sit up in her wheelchair, and instead spending 100% of her time on her back in the middle bedroom, it was the first Christmas in at least 45 years that those things didn't happen.

What did happen is Christmas gifts were opened by the entire family sitting in, on, and around Mom's bed. What did happen was Mom and Dad celebrated their 48th wedding anniversary on December 27 with a delicious take-out dinner from a local gourmet cafe. What did happen was grandchildren played indoor soccer in the laundry room hall, fixed the train by the Christmas tree, and built snowmen together, and then told their grandma about the things they got to do.  And most of all, countless hugs and kisses were exchanged bedside.

Now that everyone has returned to work, we're back again to our new-normal schedule.  Mom has a great helper in Cindy, who comes Mon - Fri to be her aide while Dad is working his job from home.  Many grateful thanks to his employer who has worked with him to not only let him have flexibility in his work hours, but his environment.  It's critically important for Dad to have that connection to his former "normal" world.  On weekends, Scott manages our house while the girls and I cook breakfast, lunch, dinner, whatever is needed, and provide Dad the outlet to go to Costco, Market Street, Walgreens, the car dealership, getting a haircut, whatever...and load up on whatever we all need, or whatever is tempting.

Side note... Costco, thank you for the Samsung TV that you tempted Dad to buy, so Mom now sees football games MUCH more clearly...and to all network TV stations...shame on you for not broadcasting several of the bowl games and the championship game.  There are lots of people in the world (us now included) who are confined to watching TV in a room that doesn't have ESPN, so we miss these events!

Down from the soapbox, life in the new normal doesn't seem so "new" anymore.  Mom has made amazing progress moving around in her bed, and in sitting positions, makings natural movements that even 1 week ago didn't exist. She can pull her legs up into the bent position almost without wincing. She can straight up for 20 minutes on the side of the bed, with her hands in her lap as of today!  Even just yesterday this was stressful, but today it was natural.  Mom has a new occupational therapist who is full of ideas of things to do, and is excited that Mom is willing to try them.

Mom also has a new physical therapist who is a very good fit. She is concentrating on building Mom's muscles and strength, with the goal of sitting independently in her wheelchair. She instills a feeling of confidence in Mom, and is both a calming and encouraging presence during her thrice weekly visits.

Another important person of note is Mom's home nurse. She has been caring for Mom's wound for several months now. What began as a deep open wound on Mom's chest has, after 7 months, finally been declared HEALED!  Done with the variety of creams, pain killers, ointments, honey from New Zealand, and most importantly the dreaded wound vacuum that was an ever present, round-the-clock whir and suction of the wound.  Done. Done. and Done!  Now, the nurse cares for Mom's delicate skin, still tearing at every unanticipated brush against anything harder than soft cloth.  Bruises and tears abound, but these are manageable with the nurse's careful tending.  She is not only a healer of the body, but she is as well an emotional support and trusted adviser to us now.

We will continue to have ups and downs, but so far the past several days seem to show an upward trend.  Yeah Mom!  2012 is over and done, not a year we would wish ever to repeat.  So far 2013 shows great promise, and we'll take it one relaxed arm and bent knee at a time!