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.

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.

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.

Rare Sweet Evenings

Mother's Day - it's got to the the best holiday ever, I know all the mothers reading this agree!  We had a nice picnic dinner at the rehab center with Mom. The patio outside was sunny and the air was the perfect temperature, with a slight breeze that ruffled the napkins but didn't blow the pink flowered paper plates away after all the barbeque and fried okra were supped up.  Rare in Texas, a sweet evening like that with Mom enjoying time outside with her family.

Rarer especially since the treatments Mom has been receiving have fairly wiped out her energy. We were thinking this last round of Avastin (given a week ago Monday) was harder to take than the initial one, because Mom's lethargy has been profound and she's had a tough time completing her therapy without being exhausted. We may have found a new culprit though, contributing to the problem, which was confirmed last night.

Mom's sugar levels are sky high!  Ugh.  Finger pokes are now a mandatory appetizer before every meal...but this form of diabetes is something, thankfully, that's controllable and treatable.  I don't know the details, but we know the sugar levels are attributed to the steroids she's been taking for months now.  The steroids help reduce and maintain reduced swelling in her brain, but the goodness comes with some side effects and whacked out sugars is one of them.  

This afternoon after all therapies were completed, Mom had a nice hour of energy and wanted to go outside.  While she was wheeling herself down the hall, Sara showed up with Caroline, Catherine, and Mary Claire, backpack and lunch box laden, having just been picked up from school.  All of us walked/wheeled together to the front patio of the rehab facility, and sat in the shade chatting about little things, "Do I hear an airplane?" "Well that's a truck on the highway but it sounds as loud as an airplane!"  "Did you get rid of the ducks?" (in Mom and Dad's pool) "Yes, the big ugly blow up swan floating in the water seems to have done the trick."  Light casual conversation, nice and easy.  The girls played games in the yard around the tree, how many skips does it take from here to there, how many pirouettes, how fast can you sprint it?  A friend from church walked up to see her Grandma, it was nice to see her and introduce her to our extended family.  Mom seemed to enjoy the levity, the fresh air, as well as the change of pace and scenery.

And for scenery, let's just say there are some colorful characters at rehab. Accidents and disease surely don't discriminate.  I have no idea why this particularly colorful person was there, but he was at the right place at the right time.  As he walked up with his ratty hair, semi-toothless grin, tattooed arms, and well-worn guitar, my mother smiled up at him, and asked him if he was there to play a song.  

He said yes, sure he was.  And he stopped right there on the patio, strummed some chords, and started to sing in a raspy voice.  A voice well-seasoned with who knows what, experiences I doubt any of us share with him.  He wasn't there to see us, but he took the time out to make my mother happy by sharing a song.  The chorus of the song went something like this:

Like a drunk reaches for his bottle

like a crying baby reaches for his mama

like a tree reaches for the sky

I reach for you

I reach for you

Who was he reaching for?  I don't know.  I know who I was reaching for in that moment.  As tears came down my face, and my mother's eyes were welling up, the singer concluded his song, and he said, "I wrote that song a long time ago. But I wasn't sure until now just who I wrote it for. But I think I must have wrote it for you."  

And we thanked him, I think, at least I hope we did.  It's hard to remember this part, and he walked inside to visit who he had really come to visit and sing to, or with. 

How lucky we were to be sitting on that patio.  It was another rare sweet evening.  Mom's doctors have told us to look for and appreciate each moment together, and tonight was one worth remembering.

Sunday Night Dinner

Last year, on a warm Sunday evening in late April, we probably would have had dinner at Mom and Dad's house.  Dad might have charcoal-grilled some chicken while Mom cooked up Granddaddy Worrell's barbecue sauce, which made you sneeze in the kitchen as it was put together, but which caused a deliciousness to float around the backyard and make your mouth water as Dad brushed it on the chicken.

Last year, we probably would have sat at the kitchen table picking every little bite of chicken off the bones, and had our wine glasses filled and refilled.  A cold glass of white to start and a soft red to finish. A sauvignon blanc to start, probably a pinot with the chicken.

Last year, Caroline and Catherine would have been sitting on the barstools helping themselves to the Costco vegetable plate and whatever else was in front of them.  Mary Claire would have been sitting close to Grandma on her side of the table.  Probably she would ask to go swimming, but would settle for a DVD, which Granddaddy would have to set up and start himself because no one except him has any clue how to work all the remotes in the den.  But that's okay, when he gets it started, the surround sound of the latest National Geographic type DVD is on, and the girls all learn something they didn't know about undersea creatures.

This year it's different.  This year we have had exactly 3 Sunday night dinners together since February 10th. One on Easter. One today, one failed attempt last Sunday.  None involved barbecue chicken, or glasses of wine, or Granddaddy fixing up movies for his favorite little girls.  

This year we do what we can and we find a new sort of happiness.

Mom spent Monday - Friday this week back at HEB hospital, receiving an Avastin infusion and a chemotherapy treatment which pretty much put her in a week long state of exhaustion.  She also had a port inserted in a minor surgical procedure, which resulted in many uncomfortable hours, but in the long run will be a wonderful thing, as it should eliminate her need for multiple IV pokes, or blood draws.  Arm bruises from her first HEB experience over a month ago, while fading, are still a visible and an unpleasant memory for all of us.

The Avastin appears to be doing its job; Mom's verbal skills are stronger than they have been. We notice more and more each day that her words are coming more naturally. The pathways she has been waiting to reopen seem to be forging their ways to success.  We're still waiting for breakthrough success with her physical abilities, she can stand up with significant help, and once standing, has good balance for a minute or two before needing to sit down again.  That's good, but she wants to do so much more than that.  

Since returning to the rehab/nursing facility late Friday, Mom has enjoyed playing silly games with Mary Claire over breakfast...the iPhone game "Draw Something" garnered some laughs today as she tried to spell the word "cereal" and between her and Mary Claire, they managed to get it right.  She also has enjoyed listening to Mary Claire hum her Suzuki cello pieces, which after 9+ years of listening to violin and cello lessons, Mom knows well.  She said today that it's very relaxing to hear the music, and that brought a lot of joy to all of us.

Last year, Mom loved to play games, review the girls' English assignments, listen to their music, and enjoy a good Sunday dinner.  This year is the same in some ways.  The Sunday night venue has changed, the pastry chef, line cook and dishwasher have changed.  (Note - she never let me wash dishes at her house!) If we work hard at this, we can keep this Sunday night dinner tradition alive. I don't think I'll be able to make the chicken, though. 

Some things are the same, and yet not the same at all. 

So many things to be thankful for

Today was a good day for Mom, and as much as I'd like to write about the myriad activities that went on (and the good sleep that I hope she's getting), I'm beat. So before I fall asleep on the keyboard and end up posting a jumbled mess, I'd like to share a few things that seem to help anchor me in a positive frame of mind (hey, hey, hey -- mixed metaphor, and I didn't even try!).

Today, I'm thankful for:

1. My mother, and the fact that I can tell her anything. 
2. My father, his strength and resolve, his incredible love for mom and all his daughters and granddaughters and grandson, his sons-in-law and my significant other. Also, his tolerance for my cat, Zoe, who's been leaving downy tufts of Maine Coon fur all over the house (and she barely leaves the room she's staying in -- her fur is magical, I tell you). She's shedding her winter coat.
3. Physical therapists who restore Mom's confidence. I can't emphasize enough how important that is, and how much it means to all of us.
4. Mom's smile and cheerful "Good morning!" when I walk in the room after not having slept well the night before. When I hear her voice, I find my energy.
5. Our daytime CNA (Certified Nursing Assistant), Cherrina, who gave Mom a bath this evening with her favorite shower gel. It made the room smell a little more like home, which must be so comforting to someone who left for work on Feb. 10 and who hasn't yet returned home. How disconcerting that must be.
6. People in the health-care field who treat the people under their care with dignity, tenderness, and respect. We've met some real angels in the CNA realm (also, a few who are still working on earning their wings). Having a good CNA assigned to you can make your day go by so smoothly.
7. My older sister and my nieces, who brought us ice cream late this afternoon. We ate it before dinner. It was good. And we didn't finish dinner. Oh, well, who cares? Mom was happy, and that makes us all happy. Enough said.
8. Actually, not enough said: The ice cream was a special treat indeed for Mom. She loved it.
9. My younger sister, who called Mom using FaceTime this evening. So many smiles!
10. Cards! Mom really enjoys getting cards from her friends and family. It seems like an average of 2 cards arrive each day, and we read them to her during her breaks from speech, physical, and occupational therapy.
11. Our incredible extended family in North Carolina. They don't make families better, stronger, and closer than us. I just wish we weren't so far away.
12. Mom's occupational therapist, Mike, who outfitted her wheelchair with a special foam wedge that keeps Mom's right shoulder propped up. Should've had that a month ago!
13. The time I'm able to spend with Mom. It's not enough -- it will never be enough -- but, boy, am I grateful for having this time right now.
14. Peter. He's my rock. He makes everything better just by being there (even when "there" is 1,700 miles west of where I am right now).
15. Zoe the cat, who keeps me company at night, when the darkness threatens to swallow me whole.
16. The duck couple that built a nest (complete with four or five eggs!) in Mom's flower garden. The 200 billion Texas bluebonnets sprucing up the roads right now. The riot of colors in Mom's rose garden. Shiny, happy daffodils. Friends and family. Spring.

Bluebonnets in front of Marshall Grain Co.

Something to remember

When Mom got her first email account, she would often forward funny images or clips on to me. It's the 21st century equivalent of clipping an article out of the newspaper and mailing it, which was something she did often when I was in college (in the pre-email days, if you can believe that.)

So in honor of Mom, here's one I received today and thought was particularly relevant. I'll print it out and stick it to my fridge later.

Sunny Saturday

Against the assault of laughter nothing can stand. -- Mark Twain

Saturday at the ICU...the morning began with another great breakfast and pill regimen. It's a good thing the nurses have a database of all Mom's medications, because she takes 7 pills at breakfast alone and more throughout the day. It's amazing she can get them all down. Some are harder than others. I'll put my plug in now for you smart NRMS students, please go into the pharmaceutics field after college. Please make it mandatory that all pills be coated, slippery, and preferably no bigger than a baby aspirin size. No one should have to swallow pills the size of rolled up quarters, especially when the pill is full of chemotherapy drugs that you are not allowed to chew or to sprinkle into applesauce.

We have discovered a few tricks in this pill-taking business. Applesauce helps sometimes, yogurt was a big help, putting your chin to your chest helps (it raises your epiglottis out of the way - who knew?)The nurses here are so supportive, helpful, and patient with us as we learn to do this together.

While Mom enjoyed her breakfast in the ICU, some wonderful teachers from her school brought a breakfast buffet up to the waiting room, where the Worrell-Probasco clan completely stuffed their piggy faces. Thank you, friends, for your love and support! Mom is very lucky to have friends like you.

No radiation therapy on weekends, unless it's "an emergency." It's hard to think of a glioblastoma as not being an emergency, but we're not doctors. So just chemotherapy pills for the weekend. Mom asks a few times a day when she can get more radiation, she is ready to get this show on the road! She knows the treatment she had Friday, in addition to the chemo, is helping her make small baby step progress. She's eking out a few more words here and there, proof positive that treatment is helping reduce the swelling and pressure in her brain.

During non-visiting hours, our family (minus Mom and never-leaves-her-side Dad) enjoyed a very special event at Richland High School. Mom's been an English teacher at North Richland Middle School for around 23 years, and she is well-loved by her students. (Check out the videos on her Facebook page or the comments in this blog!) All of her kids move up to Richland High School after NRMS, and several have joined a group called the Johnny Rebs. I don't know the exact way to describe this group...but let's say they are energetic actors, dancers, lip synchers, performers and friends. The event last night was billed as the "Johnny Reb Lip Sync", and it was a variety of acts that ranged from hysterical (a take on Toddlers and Tiaras) to amazing (Beyonce!).

The Johnny Rebs on stage

It was thoroughly entertaining - thank you to Annie Bentz and your awesome mom for inviting us to the show! The most special thing about the show was that the kids dedicated it to our Mom. What an honor to her.

When the emcee made that announcement at the beginning of the show, she got applause. And it grew, and then there were cat calls and whistles and "Go Mrs. Worrell!" Mom would have been so happy to hear that! We have a lot of it on video, and we will load it up for her to see as soon as we can. It's impossible to count the number of students Mom has taught through her time not only at NRMS but before...at York High School in Yorktown, Virginia, and at Clovis High School in Clovis, New Mexico...and probably some others that I can't remember right now. Every student that had the luck to be in her classroom has been treasured and fussed over. It's awesome to see that love come back in many different ways. Thank you, Johnny Rebs! It was a special night for us.

When we came back to the hospital after the show, I showed Mom the program of the show and told her all about it. She was so excited to read the program and see all the students' names. She asked for pictures of them all, so if you don't mind, flood my email alicia.probasco@gmail.com with headshots! Individual pictures are easier for Mom to see than videos because she can focus on them and let her eyes absorb all the details slowly.

Mrs. Worrell says, "Awesome!"

A few more things...Mom enjoyed kisses from her grandchildren and us girls of course. Lots of hand holding, lots of hugs, lots of reading cards and Facebook posts and blog comments. Keep those coming, please! She even had a comment from her son-in-law that made her giggle...he said the Tar Heel we drew on her whiteboard looked more like a steak than a Tar Heel. She laughed! Mom's sense of humor is kicking well. It's hard to make a joke, but it's easy to laugh at one.

Today let's be thankful for laughter. It's the best medicine!

Weekend update

I love my mother as the trees love water and sunshine - she helps me grow, prosper, and reach great heights. -- Terri Guillemets

Mom has been surrounded by family around the clock since Friday, February 10th. It's a testament to her that we all get along so well and aren't sick of each other yet!

Saturday

Saturday was an emotionally and physically exhausting day. There's nothing comfortable about the ICU for the patient or the family. It's a place designed to make you so uncomfortable that you heal quickly just so you can get out of there.

Mom wore a giant white gauze turban, IV's in both arms, an oxygen tube in her nose, a wrist brace, a blood pressure cuff on her arm, a catheter, and pressure cuffs on both calves to prevent blood clots. Her bed constantly vibrated, inflated and deflated, a technique designed to prevent blood clots. She was monitored constantly by multiple nurses, an endocrinologist, and physical therapist along with her neurosurgeon, primary care doctor and a social worker. She was not able to turn or lift her head or her right arm, and the nursing staff had to reposition her frequently to avoid soreness. With all the interruptions, it was remarkable that she ever got any sleep.

Finally on Saturday night, Mom's brace and one IV was removed, and she was moved to a private room, which is small but has a pull-out chair for a guest to sleep on and a handful of chairs. The oncology wing is undergoing renovation, so she's housed in part of the labor and delivery wing on the first floor. It's a cheerful, bright floor with pretty colors and wood floors, and the halls are decorated with pictures of babies. (We joked to Mom that we could get her some stirrups if she wanted to fit in with the other ladies.)

Sunday

Despite a somewhat restless night, Mom is having her best day since the surgery. She ate some bacon and a biscuit at breakfast and was relaxing when Charles, Macklin and I (Sara) showed up for a visit. We had paused in the hall to warn Macklin to be on his best behavior, and like a typical 3-year-old, he was loudly protesting. Apparently Mom heard his voice from 20 feet away and told Daddy to go get him RIGHT NOW:
That's my grandbaby. That's Macklin!

They had a wonderful visit, and seeing her precious grandson put the sparkle back in Mom's eyes. They shared stories, and Macklin helped Grandma practice her ABCs. (She remembered the tune but struggled with the letters.) Not to be outdone, her sweet granddaughters visited after church as well, and she was so happy to see them. Everyone got kisses and squeezes.

She also was visited briefly by two special friends, Nancy Sharma and Carolyn Kitchens. Carolyn remarked that one of the nurses told her Mom has had more visitors than anyone else in the hospital.

Mom and long-time friend, Nancy Sharma

Alicia and Sara shooed everyone away so Mom could eat lunch and work on her physical therapy. She has temporary loss of some peripheral vision in her right eye as well as decreased sensation in her right arm. We're confident it all will return with patience and therapy.

After a long morning of practicing her language plus arm and leg lifts with Alicia and Sara, Mom complained to Daddy:
Oh, Lord, these ladies worked me!

She may tease us, but she really wants to work hard. She's eager to return home as soon as possible and worries about her students, her garden, and her grandchildren. Mom has a life full of blessings, and she wants nothing more than to return to full health and be able to enjoy it all as soon as possible.

Daddy: If you would just close your eyes and take a nap...
Mom: It's hard. I've got things to do!