Eulogy

I wrote the following words for Mom and shared them with our friends and family at her funeral on December 23. Cleaning up some files this evening, I came across the eulogy and realized that, in the post-funeral haze, I never posted it to Mom's blog.

I'm a slow writer. I enjoy it, but I ponder every word and write dozens of drafts. Email is torture; it takes me forever to craft responses. Of course, Mom loved good writing of all kinds and always encouraged me to write; she was my biggest fan. So I decided that writing a eulogy was my responsibility and the best way to honor her memory.

I thought about what I would write for months before she passed away, but I couldn't bring myself to put a single word to paper until it was time. A few months after Mom was first diagnosed, I was struggling with nightmares and fear of what lay ahead for our family, so I went to see a counselor. Not a very good one, as it turns out, but she said one thing that really stuck with me. "Don't go there, until you're there." Meaning, don't imagine the thing you're afraid of until it's really standing there in front of you. Torturing yourself mentally won't prevent what you fear from coming true.

So I tried hard not to think about it, and I didn't write anything, but then we were there. We had so many details to pull together very fast because it was almost Christmas, and we didn't want our friends to have to choose between the funeral and their family time. So we burned the midnight oil and pulled everything together in two days: the funeral home, the music, her outfit, the obituary, and the slideshow complete with photos from every part of her life.

Then the eulogy. When I couldn't put it off any longer, and the morning of the funeral was upon us, I sat down and wrote it all in one sitting. Like Mom taught me, I built an outline first, and then just two drafts and I was done. Thankfully I saved many emails from Mom over the years; it helped to go back and read them again, hearing her voice through her words. I like to think she was collaborating with me. Reading these words now, I wish I could do a few more drafts. This version is okay, though. I think she would have liked it.

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Words for Mom

Hi everyone. I’m Sara, or “Daughter #3” as my mom sometimes called me.

First, a bit of business. Our family is requesting that anyone who would like to honor our mother consider a donation to the new Judy Worrell Memorial Fund at the American Airlines Credit Union. It will be used to establish a scholarship for graduates of North Richland Middle School and Richland High School. Information on how to contribute is on the program.

Also, we would like to thank all of you who showed up in force when Mom was first diagnosed and who supported her throughout the last 22 months. Very special thanks to the staff of Interim Hospice, especially her physical therapist Marilee Luna and nurse Ileine O’Connell. Marilee and Ileine began caring for Mom in the summer of 2012, and they gave exactly what our family needed: good medical care, a warm hug, and a listening ear. They never gave up.

You all know that Mom was very sick for the final 22 months of her life. She surpassed the average life expectancy by many months - her sheer willpower held the end at bay for a long time. So I’ve had a lot of time on planes traveling between my home in California and my home here in Texas, and many times I found myself teary on the flight thinking about all that I will miss about Mom. Things that I wish I’d done while she was still with us to make her proud, like get a graduate degree as she did.

That said, I had 39 years with Mom, and she seemed to think I turned out pretty good. So when I stopped to think about what I did learn from Mom in all that time, I realized this award-winning teacher in the classroom passed on the right lessons to me all along the way, too.

Today I would like to share a few thoughts with you all about the life lesson plan Mom taught to me.

Life lesson #1:  Love is action.

Mom had a full-time job as a teacher when I was growing up, and even so she still had a home-cooked meal at the family dinner table every night. Busy with three daughters, a husband, and even a cat, we had a lot of laundry, but our house was still decorated beautifully for every holiday, and the dining table was full of tins of homemade cookies and fudge.

Growing up, I thought everyone’s home was like that. It wasn’t until I became an adult and parent that I realized how hard that must have been. How in the world did she and Daddy do all of that and make it look so easy? I don’t remember her complaining about a long commute like I do (although she did complain about grading papers), and I don’t remember takeout dinners very often. I do remember Mom woke early and often fell asleep on the couch grading those papers. She was the last to the dinner table because she made sure everyone else had what they wanted first. She was full of energy and optimism, and she had high standards for how our family home would feel.

This is from an email she sent me a few years ago:

“...Since your dad won't be here this weekend, we may have to eat out. Won't it be nice to have a "girls' day out"!  We haven't had one of those in so long!  You do know that Caroline and Catherine know what a "girls' day out" is don't you?  It means Grandma buys them something and we have a good time.  ... We might even invite Scott.  Poor fella, we don't want him to be lonely and we might need someone to carry our packages.”

Mom’s love for us was generous, selfless, and all action.

Life lesson #2: A full life has equal parts work and play.

There’s no doubt that Mom worked very hard as a teacher, but others here will tell those stories. Outside the classroom, she worked and played just as hard. When we lived in New Mexico, Mom had a large garden in our backyard, and she loved working in it. She once gave me a patch of dirt and said I could grow whatever I wanted, and I chose green beans. I wanted them to be the BEST green beans, so I watered them every day and let them grow and grow…they were huge. Mom knew they were past their prime, but she still helped me snap off the ends and cheerfully ate them anyway – strings like rope and all.

After all three girls finally left home, I think Mom and Daddy initially felt some of that empty nest syndrome. They seemed to get over it fairly quickly, and they enjoyed several trips to Napa Valley and told great stories about wine dinners and the people they met. After 50 years together, they still had more fun with each other than with anyone else.

On my 30th birthday, Mom sent me this email:

“We want to wish you a happy birthday!  Seems like only yesterday that we brought you home from the hospital!  What are you doing for your birthday?  Going out for some dinner somewhere? We are having a tasty glass of Schramsberg Cremant in your honor right now!  Thanks for having a birthday!”

Mom knew how to have fun.

Lesson #3: Make a difference in the life of a child.

Judging from all the emails, cards and artwork we received from Mom’s students, she made a difference in many, many lives. Of course, the biggest impact was in the lives of her daughters and grandchildren. It was pretty amazing to watch Mom transform into Grandma when her first grandbaby, Caroline, was born. She took on this new job with gusto. Alicia told me when Mom first heard that she was going to be a grandma, her response was, “Hot dog, hot dog, hot dog!”

Her enthusiasm for grandparenting had no equal, and she was happy to do whatever she could to help us. She taught her granddaughters to read in “Grandma School”, and her house is full of children’s books. I mean, we have more children’s books than most small town libraries.

When my son Macklin was born, she came to Chicago and spent one of his first weeks with us. It was the first one-on-one time I had with Mom in a long time, and she was the one to convince me motherhood was not an insurmountable challenge. She kept repeating, “You can do this.” It was a wonderful week, and I cried my eyes out when she left. She did, too. (A family with seven girls – we’re a weepy bunch.)

Later she sent me another email:

“I really enjoyed myself—just sitting there visiting with you and Charles and Macklin.  I especially enjoyed loving on Macklin.  He is a wonderful baby, Honey, and you and Charles are going to love having him in your life.  Pretty soon you will wonder what you did with your time before he came into your life.  Children make our hearts grow; mine surely has.  I love that little boy like he was my own.”

Take the time to make a difference in the life of a child. There’s no better investment in our future than to invest in theirs.

Undoubtedly everyone in this room has felt the impact of the last two years. Perhaps it changed your view of the world and of your place in it. It certainly did for me. I can say without reservation that I am a better wife, mother, sister, and daughter today than I was before, because of what Mom taught me throughout life, and especially in the last two years. She was the epitome of strength, determination, and love even on her worst days.

To close, I would like to ask everyone to use this experience to remember Judy’s lessons, her passion for learning and reaching high, and to honor her motto:

Start now! Stay Focused! Finish strong!

I love you, Mom.

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.

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.

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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.—

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)

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 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.

Taking the next first step

There is in every true woman's heart, a spark of heavenly fire, which lies dormant in the broad daylight of prosperity, but which kindles up and beams and blazes in the dark hour of adversity. - Washington Irving

Yesterday we got the good news that Mom could be transferred to UT Southwestern's Zale Lipshy rehabilitation hospital. She now has a nice corner room with a view of downtown Dallas. It gets nice light in the morning, and the skyline twinkles like Christmas every night. We liked Zale the last time Mom was there; it's a beautiful facility, the staff were strong and kind, and she made progress in their physical therapy care. The trouble is staying long enough to make a difference; the health care industry is designed to move people through the system quickly and get them home, but it takes patience and time to regain strength when so much has been lost. Rome wasn't built in a day, right?

So we aren't sure how long Mom will be at Zale, but we're hopeful she is there long enough to rebuild some muscle strength, energy and endurance to return home and enjoy a better quality of life than she has for the last two months or so. Her goal is to strengthen her back, core and leg muscles in particular, which have been so devastated by the months of high steroid use. Stronger muscles mean more mobility and less pain. More self-reliance and choice. Activities to enjoy in this holiday season. One fewer reason to be depressed, when there are so many reasons why one could be.

I'm writing this from an altitude of 39,177 feet, thanks to the in-flight wifi on my flight back to Texas. Today I'm thankful to be spending my 38th birthday weekend with Mom and Dad, helping to get Mom settled in her new digs and lending some support to Dad, who is under more strain than anyone should ever be. I'm thankful my employer lets me take off every few weeks and doubly thankful for my husband and son who understand and give me extra hugs when I return.

This holiday season we're asking for the gifts of strength, health and family time together. Let's hope 2012 ends on a better note than it began.

It's a good day

Things for which we're thankful today:

• Mom has more energy and is no longer sleeping all day; yesterday she took only one hour-long nap, and she managed to sleep most of the night. It's made a huge difference today; she's more bright-eyed and pink-cheeked.
• Mom is working with a speech therapist as I type this, and she's acing all the tests. Yesterday when she worked with the same therapist, she didn't do well at all; she got frustrated and angry at her inability to find the words, couldn't follow directions or count, and couldn't answer the questions. Today she's willing to try the exercises and is successfully counting, answering questions and following simple directions.
• Mom's MRI results are good - no growth seen, despite skipping a dose of Avastin and chemotherapy. This means her sporadic anxiety and fear is likely due to her extended hospital stay and the pain she experienced in the ICU.
• Mom has been accepted to the UT-Southwestern's Zale Lipshy in-patient rehab program, which has neuro specialists, and will be transferred there today. Her doctor explained it's "where all the VIPs go." We're so happy, it feels like she was accepted to Yale, instead of Zale

First step, Zale for regaining her strength. Next step, home.

Update: Mom has a great room at Zale Lipshy; it's big enough to accommodate a lot of folks, has a small fridge and table, and a lovely bright window facing downtown Dallas. She'll see the nighttime skyline from her bed!

View from Mom's room

Post-ICU Life

Post-ICU, resuming daily life in a "normal" hospital room, should be a relieving occasion, no more round the clock beeps, no more wires and tubes, no more dreaded pulse-oxygen monitor on Mom's index finger. No more clear liquid diet.

Post-ICU life this time around has been, well, eventful in new and unwelcome ways. After so many medicines, procedures, and days in the ICU, Mom is having difficulty adjusting to a "normal" hospital room and what it brings. She's experiencing heavy swelling of her legs and feet due to fluid retention, and a new complication: "sundown syndrome", which is yet another medical term (?) we're learning about.

Mom is sadly experiencing periods of agitation and confusion, which she's never experienced before; she understands later that she's not making sense, and she's saying things that are unreasonable and unnatural. Her ability to understand her differences in mentality is important; it means she's not in a confused state 100% of the time. During the times when she is alert and "in the moment" she completely understands, and sadly accepts, her current status in the hospital. When she's more "lost" and frantic, she really has difficulty accepting her goals of "eat good food, get good rest, and take time to get better." The difficulties extend into the evening and nighttime hours, which interrupt both her and Dad's sleeping patterns. The recommendation from the doctors is to eat, rest, and wait.

Waiting even just the last two days has been draining on everyone, particularly Mom.

Even in these difficult days, though, we find bright spots. Mom was absolutely delighted yesterday to receive an email with pictures from a dear USAF friend. Blown up on the iPad, the pictures of her and Dad enjoying good times with old friends, as recently as last year, reminded her and us of happy times which weren't long ago, not long at all.

Dad enjoying USAF reunion, February 2011

Mom telling a funny story at USAF reunion, February 2011

She enjoyed watching videos of Macklin telling jokes and playing silly games with Sara and Charles, and blowing kisses via the magic of the internet.

Also, we're thankful for Mom's menu, which is, while still hospital food, served on demand...including goodies like Yukon Gold Potato Soup and chocolate ice cream, not necessarily eaten in that order.

Lastly, we're thankful for the nursing staff here, who are holding Mom's hand and helping us through these newest trials.

Still in ICU

Mom and Jennifer

 
Mom is still in the ICU, being monitored closely for signs of whether the bleeding on the left side of her colon is continuing. Yesterday's not fun test failed to locate the exact source of the bleeding, so that was disappointing. On the other hand, her heart rate remains steady and in normal ranges; it goes up when there's active bleeding. So maybe the GI bleed is healing on its own. We are all praying that is the case, and that Mom can eat real food soon.

It's been a week of broth and water. It's torture to go without food; at some point it's all the body can think about. This morning Mom asked for "just some crackers," as though maybe we would grant her wishes if she didn't ask for too much. It was heartbreaking.

Today the pulmonary fellow and her team at UT-Southwestern are planning another test to view Mom's colon and small intestine, hoping to see signs of healing to indicate whether the bleeding is resolving on its own. We're hopeful this one finally shows us what's going on (or what was going on). One bright spot is that she'll get sleep during the procedure.

We continue to pray for our Mom, for the healing of her body and for some peace of mind to allow her to rest.

Update at 6:50 pm CST: Mom now is allowed to eat soft foods, so she's enjoying a bowl of applesauce, and if that goes well, she'll soon enjoy some soup and some chocolate pudding. Thank goodness!

Mrs. Muleshoe

When Mom is laying flat, between procedures, feeling and hearing gurgles in her tummy and worried about what's next...when none of us have words that will help because we just don't know what to do...what do you do besides feel helpless?  Sit and be quiet and wipe a tear from her eye, readjust the cables that seem to all lump up under her chin to under the blanket, knowing they will creep up again but this one tuck might make a difference...  The snake's den of cables rivals what's in Dad's computer room.  What can you do?

You can thank God for sending you the little lady from Muleshoe, Texas, whose husband is in ICU, to sit by you and chat.  Surrounded on both sides by 20+ members from a coughing, raucous-talking, tattooed and pregnant, and recently surgically-released family of someone in the ICU, she and I sat for a while today and just chatted quietly.  We decided that those 20 people, minus the 4 small children with them, probably didn't have jobs.  We weren't very kind in our behind-the-magazine-so-they-don't-see-us-being-snippy talk.  They probably didn't even know we were there, so caught up in their family reunion they were.  I'm sure their strength and volume will help heal their loved one.  Lots of love in that family evident from their vocal superiority.

Mrs. Muleshoe was a nice lady, and we bonded.  And she planted a seed in my head of a memory that Mom might like to revisit.  So that's how we helped pass the time before the GI team came in for their procedure this afternoon...which they are doing right now so I can't blog about that...but I wanted to keep this story fresh because it was fun.

From 1973 - 1979, we lived in Clovis, New Mexico. Back then, Clovis had a Kmart and a Sears, a Tankersley's dress and shoe shop, and I think a Rutherford's shoe store, which was beside the jewelry store where where Mom, Jennifer and I got our ears pierced in 1979.  Except for Kmart, which was closer to our house, all these stores were on Main Street, a brick-paved street that I marched in with my brownie troop during Christmas parades.   That's about all you need to know about Clovis.  That, the barber shop and the A&W drive in, and you've got the whole city covered in the mid 1970's. 

Partially due to the lack of variety, and definitely due to the need to get out of town, each year when we needed new school clothes, we drove to Lubbock, Texas.  They had a mall there. I loved going to Lubbock.  I remember being squished in the back of our gold 1978 Honda Accord coupe, the first year they were available (in Clovis anyway).  That was a great car.  I remember driving past the best barbecue place in town that had the paper towels and white bread loaves on the picnic tables inside, past the motels and car dealerships, past the back of the Welcome to New Mexico sign, which of course I always turned back around to see, and to Texaco, New Mexico. Then, bump bump bump across the railroad tracks to the VERY EXCITING STATE of Texas. 

Farwell, Texas led to Muleshoe, Texas (here's the memory seed) where there was a Dairy Queen (or similar place, I remember it as a DQ but Dad says he doesn't...I think he doesn't remember because he never stopped and I remember because I asked him to every single time) and a statue of a mule.  It was a very big deal to drive through Muleshoe. 

So I asked Mom today, what did we pass when we drove from Clovis to Lubbock? In a little town after Texaco and Farwell?  She remembered with a real smile, "The horse!" she said. Close enough, it's a very horse-looking mule.  I asked what else is in Muleshoe?  She thought quietly and shook her head..."Nothing."  "Well, that's true, but there are 2 distinct other things in Muleshoe. One of them is cows.  And what comes with cows?"  "I don't know."  "Flies."  "Oh yea, there sure were lots of flies." Her face relaxed, she was really remembering driving with all of us piled into that car.  She was with me in the car...

Fast forward to the mall at Lubbock.

Me "What did we always get to eat in Lubbock, something we only got at the mall, and we loved it so much? There are 2 things specifically."

Mom, seriously thinking, relaxed face, eyes closed, "I don't remember...at the mall?"

Me "Here's a clue...it's a color, you drink it..."

Mom "I don't know...tell me."  (several rounds of clues)

Me "Orange Julius"

Mom, completely relaxed now, big grin, eyebrows raised "Oh yes, Orange Julius! That was so good!"

We walked the same walk with Hickory Farms, remembering how we always snacked on the beef stick samples and the Havarti cheese.  Then we talked about the big fat pretzels with the white rock salt on it.  And we talked a bit about Red Lobster, where Jennifer lost a tooth on a saltine cracker, and where to this day none of us can go without re-telling that story  

We walked the walk through the campsite where we would for a very special occasion go camping in our Midas Mini Motorhome, white with a orange stripe and orange/green shag carpet inside.  We saw in our  minds the little prairie dog town that I remember loving so much, watching those cute little animals play and play.  

It was a little 20 minute chat, probably not more than that, but a nice walk sharing memories with Mom.  It reminded us of happy, carefree times.  A little mental break from the physical difficulties of today. 

A flood of memories, thanks to a chance encounter with the little lady from Muleshoe.

Back in the ICU

We're in sadly familiar territory today, the ICU.  Different hospital, much larger facility.  Same level of anxiety and stress as before.

Mom has had a few blood transfusions as the doctors here try to figure out what is causing her to bleed.  We've learned that a GI bleed is a difficult problem to resolve, it bleeds, it stops, it bleeds again with no regularity or pattern.  For most tests, during the test there has not been a bleed, so resolution has been impossible.

Last night Mom was moved from a normal room to the ICU because in addition to hemoglobin counts going down, her heart rate was going up, which meant the bleed was active. They took her to the nuclear medicine facility here and did another tagged red blood cell count, and this time they found a general area where the bleeding is.  After a trip back up to the ICU, and considering the next steps, they took mom for an angiogram where if the bleed was still active, they could seal it off.  

As luck would have it, the persnickety bleed stopped and the angiogram was ineffective.  The stint was left in her artery, though, and the plan is to try later this afternoon, hopeful for success.

The GI staff here, in the meantime, is going to try their hand at resolution, now that the general area has been more defined.  We are hopeful for their success.  

In between these treatments, Mom has had her mediport wound repacked and dressed, and has had a central line put in.  Neither of those procedures were pain free.  My heart breaks for the strength required to get through those.  Not one but two such procedures within 2 hours.  That strength is amazing.  You know, after so many years of teaching wonderful talented and/or horribly mannered junior and high school students has steeled her reserve, so that now she can focus and concentrate on managing the pain, like she has managed the hundreds of hormonal children through her career. Quite a special woman.

I'm sending another plea for those of us who are able, to please donate blood.  I've seen how it helps Mom, and there are lots of other moms and dads here who are using it too.  

Please also pray for my dad, who is trying his best today.  I was thinking earlier than ICU for recovery from brain surgery was hard.  This may be worse, the not knowing how or when it will be fixed.  There's a lot of fear of the unknown, and taking the day one minute at a time.  

A way to help

We can do no great things, only small things with great love. - Mother Teresa

Mom is having a tough time. The gastrointestinal problem we referred to in the last post turned out to be bleeding somewhere in her body. The source has been difficult to find, requiring a colonoscopy, an endoscopy, and an interesting test involving tagging red blood cells with radioactivity. The surgeon is advocating a cautious approach today and says the bleed may be resolving itself (she seems to be losing less blood), but if it doesn't, she may be in for another surgery. She can't eat anything until the surgeon gives her the green light. Her last meal was Sunday's dinner: Sonny Bryan's smoked turkey sandwich.

Mom is receiving a blood transfusion again because she's already lost so much, and her hemoglobin levels are too low. They have the blood she needs, but it reminded us of the national need for blood. When someone needs blood or platelets, they need it fast, and blood is not always in ready supply. All of us healthy adult people can do something about that by donating blood or platelets. It's easy, free, and a great way to support our Mom and others in need of help.

If you're in the position to do so, please consider donating blood or support to the Red Cross.

Thank you for your help and prayers.

Lists on an less than fun day

When you're at a the best cancer hospital in North Texas, and you qualify for the corner suite, this is what you get.

1.  Room for 3 doctors, 3 nurses, 1 tech, and 4 family members to be in the room all at the same time, without anyone tripping on each other.

2.  A "Blood Fairy" tech who completes a blood stick on the very first try and successfully draws a rainbow of vials, total 4, with absolutely no flinching from Mom.

3.  A patient tech who can lift and assist Mom with grace, confidence, and ease, and who knows already that if you startle Mom from sleep when you walk in the room, you need to give her a few minutes to wake up completely before taking blood pressure readings.

4.  An oncology social worker who explains the process, and the brevity of what Mom's stay could be, with heart, compassion, thought, and patience.  

5.  Visits from (probably) a total of 5 different doctors in a single day.  And they were working as a team, clearly, from their conversations.

6.  Productive discussions with every single hospital employee who is in the room, which means they read the chart before the come in!

7.  Delivery of the room service menu at almost exactly the same delivery time they said it would take.  How nice to know dinner is served at 645pm, instead of someone just popping into the room with a tray.  Even if it's clear liquids, the presentation was nice and the server was dressed in a serving uniform, with a nice cap on.  His personal demeanor and dress were fitting of a fancy restaurant. Seriously.

What you don't expect, but what you also get is new issues, probably due to the number of  moves she's made between hospitals and nursing facilities.  Good news is that her infection has responded positively to antibiotics, and her voice has almost completely returned.  Bad news is that she has a new gastrointestinal problem which requires investigation.  So I have another list to share.

Ways to get a patient to drink a salt water tasting liquid.

1.  Tell her stories about her grandchildren.

2.  Tell her stories about sales at Ann Taylor Loft.

3.  Call her brother and have him tell how hot and humid it is in North Carolina, and how he helped his cousin install a sliding glass door today. And then tell her how you can't imagine any of your daughters helping their cousin install a sliding glass door!

4.  Tell her that the nice oncology social worker looks a lot like her friend Brandi. 

5.  Flavor the liquid with apple juice.  (gross)

6.  Flavor the liquid with green "Ice" drink from Costco. (gross)

7.  Flavor the liquid with the orange drink. (gross)

8.  Estimate the number of swallows it takes to get to the next 1/4 of the cup down.  Try to count the swallows.  Not easy..some swallows are sips and they don't count!

9.  Tell her that this is probably equally bad to the Brussels sprouts that I tried to make years ago, just like Rachael Ray, that were a miserable flop. Never again.

10.  Tell her you're so very, very sorry she has to do this.  But that it's the only thing that will help with tomorrow's test.

We said goodbye to Sara today, headed back to California to be with her wonderful husband, precious son, and loving kitties. We are so thankful for her time here and her coordination with Dr. Maher's office which brought us to this good place. We're all confident we're in the right hospital with the right staff.   Just need to get Mom to the right level of health. Today was a hard day, with a step forward (voice) and a step backward (GI).   But Mom's a trooper, and I know she'll finish today and start tomorrow as strong as she can. 

A Welcome Respite

It's hard to describe what Mom has been feeling the last two weeks.  Probably none of us really understand. We know she's fatigued. We know she hurts. We know painkillers aren't effective enough for some of the procedures she has to endure.

We know the doctors have said things that sound like "This is to be expected" or "We'll see this through."  Things that don't bring a lot of hope to our mother, who has always been filled with hope, or to a family who desperately wants to see progress and waits, always, for a new tomorrow with bright energy and conversation.

The small lights of happiness we've felt the last 2 weeks were appreciated, but we knew something significant was wrong. An action plan was missing. And on Friday, the light of lights was lit again. Mom got to see Dr. Maher of the Simmons Comprehensive Cancer Center at UT Southwestern in Dallas, and again, the fire of hope burns!

Friday, Mom's scans were read and explained to our family as an unexpected and terrific response to the Avastin and chemotherapy she's been taking.  Her cyst has shrunk significantly and there are no new ones taking its place. RELIEF!  PRAISE!  What a great thing, Mom has worked so hard this past several months, and she is accomplishing amazing things.

But still, then, why is she bereft of all energy?  Why cannot she keep her eyes open for more than ten minutes?  She can't talk more than a scarred whisper.  The team of UT-SW doctors attribute this to an infection, and they're working to identify of what, but they do not believe this is due to any brain abnormality.

So after Mom's appointment Friday late morning, she had lunch with our family in the food court, and then was transported (via her very own car, first time sitting in it since February 10th...since the wheelchair van wasn't scheduled back until later that afternoon) to a hospital room on the UT-SW campus.  I wish I had been there to see it, it must have been a moment of wonder, when Mom touched and saw and felt her beautifully clean red Cadillac.  She and Dad have had that car for a few years, but I swear it has never lost the "new car" smell. And for someone who hasn't been in a nice car for months, imagine what a sensory experience that was!

None of us could have anticipated what sensory delights were to come, though.  And I'm seriously not exaggerating here.

What would you think if you were told you room included a kitchenette, a dining table, a few fold out chair-beds, a rollaway, a very large window view over the campus, a granite-like (or real?) counter and fancy faucet bathroom? A room service menu that will bring you on-demand food?  A television with integrated DVD?  Free wifi?  Maybe an upgraded room, maybe a suite, at a vacation destination hotel? Maybe a room on the oncology floor...

It's true. Mom's room is the best of the best. The nurses and techs on duty seem to be right on their toes. Sara said one who came in several times for tests was so stealthily silent that he was able to perform his duties without even waking mom once.  The door doesn't squeak, and there is space enough so the girls can talk very quietly and Mom doesn't even hear a peep.  Truly this is a room that Mom deserves, every sterile square inch of it.

My original though of "Wow!" was quickly brought back down to realistic sadness when Sara confirmed this is the type of room they save for the sickest patients, and yes, Mom is in that category. With this pending-location infection, with a wound vac, with still severe fatigue and word-salad language, Mom is at one of her lowest points of her illness.  So there's no cause to throw a party and invite all her much loved friends and extended family into the suite.  There is much reason to be thoughtful in prayer, be considerate in messages, cards, letters.  Every personal interaction now is an effort for Mom.  All 8 of us in her suite today were too much, so 5 of us left sadly but fairly quickly when we realized it had to be overwhelming to her.

Little by little, Mom will be able to enjoy the background noise, the grandchildren scuffle and chatter, the pictures and stories and drawings.  The accidental drop of a fruit plate.  The music of an iPad with headphones not completely plugged in. The crackle of a Barnes and Noble bag filled with One Direction magazines and books for our favorite pre-teen.  The crunch of NC salted peanuts.   For now, what she really cherishes is a warm damp washcloth on her face, a pillow cooled by an effective air conditioner, and an occasional sip of iced tea.

And the love of family and friends, and the care which she is receiving in this new place, which, finally, seems  to be a place that will treat her with the goodness and effectiveness she really deserves.

Jennifer enjoying the new suite.

On-demand room service with tempting selections... even a different made-from-scratch fruit cobbler every day. (Mmm!)

Our new kitchenette.

A little smile

What soap is to the body, laughter is to the soul. --Yiddish Proverb

If laughter is the best medicine, Mom is getting some good medicine this week. I'm convinced we have a biological drive to giggle at silly things when our bodies are under extreme stress, because we all get a little punchy after hours in the hospital surrounded by bad news and worse daytime television. We have had a few funny moments this week, and we were rewarded with smiles and whispered comments from Mom that make her seem like her old self.

Back in the good days, our family dinners often were punctuated by pun fests; something would get us started, and we would try to outmatch one another with increasingly bad puns. Usually it was a battle between the sisters, with Mom rolling her eyes and Dad threatening to make us leave the table. So it felt good last night, standing around Mom's hospital bed and holding our plates of spinach frittatas, when somehow we got into a pun fest. I think Dad started it, and he and Jennifer traded volleys for quite a while. I was completely stumped and couldn't think of a thing to contribute, but I noticed Mom smiling with her eyes closed.

Then this morning, while Dad helped Mom with breakfast, Jennifer and I debated ideas for new businesses as we often do (but never actually pursue.) Her idea was to open a shop to offer custom bra tailoring. Brilliant, right? The conversation went something like this:

Sara: "What would you call it? You have to have a good name to get started."

Jennifer, pondering: "Hmm. How about 'Nip and Tuck?'"

(Giggles ensue.)

Sara: "That's perfect. You need a backup name, just in case that's taken. How about 'Boob and Tucker?'" (A play on "Bib and Tucker," the shop where our grandmother worked as a saleswoman and tailor.)

(More giggles ensue.)

Mom looked at Dad, with an exasperated whisper: "Your daughters!"

Two little words, meaning so much more, and they were music to our ears.

Day 115

"Success is not final, failure is not fatal: it is the courage to continue that counts." - Winston Churchill

I'm back in Texas and spending day two with Mom in the hospital. We do a lot of waiting in hospitals - waiting on the doctor, waiting on the surgeon, waiting on the test results to see what kind of infection Mom has (or had.) Waiting on the wound care nurse to look at Mom's wound and tell us why it isn't healing. Waiting on some peace and quiet so she can nap uninterrupted.

Waiting on some good news.

Status on Day 115

I am dumbstruck with how thoroughly the past weeks have knocked Mom flat. When I left her two weeks ago, she was sad to be in rehab still, napping at regular intervals, but she was eating well, working hard in therapy, and holding conversations. We could talk, look at photo albums and tell stories.

Now, two weeks later, the infection and who knows what else is zapping every ounce of her energy. Mom keeps her eyes open long enough to eat some of her meal or savor a few red grapes, but then she asks for her blanket to ward off the chilly hospital room and closes her eyes again. When she speaks, rarely and only a few words at a time, it's a whisper or a croak. Her cheeks have a little color, but her hands are pale. During a restless nap, she whispered numbers - ten, eleven, twelve - like she counted steps in physical therapy.

She's stoic during the many medical visits of the day, even today's visit when she refused pain medicine while her surgical wound was cleaned and patched with a new sponge and a tube connected to a "wound vacuum" to help her heal. A pump she'll wear 24 hours a day, 7 days a week, for at least several weeks. Apparently she isn't healing on her own because diabetes and steroids impede the body's natural healing process. Talk about adding insult to injury.

I never knew what a high pain tolerance she has and resolve to never again whine when I get a paper cut.

Next steps

We are waiting (again) on a call from specialists at UT-Southwestern to tell us whether we can transfer Mom there. We're told her "numbers are improving," but it's hard to wait and have faith you're hearing the right message when it's coming from the doctors who told us the port would be a good idea. So we're grasping at UT-SW as a better path.

We'll keep everyone informed. Please keep those good thoughts and prayers coming.

Blessings

There are moments of grace, of course. Like Stella, the patient care technician (PCT) who gives excellent bed baths and real shampoos and always gently massages Mom's back with good-smelling lotion. The tomato plants put in by Daddy and Jennifer months ago are now providing plump, creased, deep red heirloom tomatoes to slice and serve with mozzarella, basil, sea salt and a drizzle of olive oil. The girl at the Starbucks drive-through window recognizes Jennifer on her daily trip, knows why she's there, and sometimes gives her a latte for free because, she says with sympathetic eyes, "You buy so much."

Then there's the beautiful artwork created by my niece that brightens Mom's room and some of the other patients' rooms, and there's the way my 3-year-old son said thoughtfully, "I don't know why Gramma is sick, Mommy. She needs lots and lots of medicine. But she'll be okay."

The yellow flowers growing in the chapel garden look like the wildflowers that bloom alongside winding Napa Valley roads.

Stumbling blocks and stepping stones

Mom and Sara, circa 1980-ish.

"Teachers who inspire realize there will always be rocks in the road ahead of us. They will be stumbling blocks or stepping stones; it all depends on how we use them."

There were many rocks in the middle of the road for Mom in the last two weeks. At times it seemed less like a road and more like a never-ending line of boulders, all facing uphill. She went back into Harris Methodist HEB for an infusion of chemo and other medicines last week, and this week she's struggled to stay afloat; she's lethargic, and she has tremors and a weak voice. We're working closely with the hospital to understand what might be causing these new and unwelcome symptoms. Two MRIs seem to indicate her glioblastoma is not to blame - there's no growth, no new tumors. But still, no explanation and no solution.

Then today Mom had surgery to remove an infected Medi-Port, a device that was supposed to make receiving care a little less painful. Putting it in weeks ago was supposed to be a good move, a solution, a blessing.

"This is an easy surgery," the surgeon said. "She'll be sore for a few days but then fine. It'll make everything easier from now on."

I guess that didn't work out as planned.

Mom's out of surgery and resting, already feeling a little better, and surrounded by my loving, tired yet tireless Dad and sisters. But it's not where anyone wants to be. On a sunny Saturday in June, after school lets out for the summer, Mom should be in a pink t-shirt, denim capri pants and espadrilles, sitting by the pool with a book and looking forward to some chilled chardonnay when Dad gets home from work. She should be rosy-cheeked from a workout at the 24 Hour Fitness with her friends, full of funny stories about their children, whom she adores like her own grandbabies. She should smell like lavender lotion and be wearing a touch of lipstick, maybe Revlon's "Wine with Everything" or "Sugar Poppy."

Mom should be planning "Grandma School" in the summer, complete with a curriculum to teach her grandson how to read and sharing tips on writing compelling essays with her soon-to-be-high schooler granddaughter. She should be enjoying retirement and teasing Dad about when he would finally join her. When they would take that barge trip through French wine country.

I guess none of this is working out as planned.

I'm frustrated, exhausted, scared, SO MAD and tired of crying all the time. And I'm coming home to Texas again, as soon as the plane can get me there, and we're all going to lock arms and figure out what else is hurting our beloved Mom, and we're going to fix it. Those doctors better be ready for us.