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. 

Rehab Center Thoughts & A Chemo Plan

When you're temporarily living in a rehabilitation center/nursing home, which, let's be honest, is a nursing home with a therapy room, you are drained of all energy.  The therapists at the center are excellent but the hours not in therapy drag on, and you're surrounded with people who are almost certain not on the same path to recovery that you are. All of us are carrying bags under our red, puffy eyes and our nerves are on edge.  All of should probably be on some kind of sleeping medicine, because I know it's been months that any of us have slept a full 8 hours without interruption, whether intentional or just restlessness.  I blame a lot of that on the center itself. Nothing "wrong" with it that I can pinpoint, but surely nowhere I'd ever want Mom to be for even a brief time.

So it's been hard to write Braintuna the last week, even though there is actually some interesting stuff going on.

Last week, Mom had an appointment at UT Southwestern Medical Center, probably the best brain care center in  North Texas.  We met with Dr. Elizabeth Maher, who provided almost an hour and a half of encouraging, supportive, friendly discussion. She shows Mom's scans (MRIs and CTs)  and she said confidently that this "cyst" is neither progressive nor dire.  Fabulous words for us to hear!  She said the scans indicated what 30% of patients with Mom's condition experience, leaking of the vessels in the tissue surrounding the cyst.  (She did not use the term tumor.)  The vessels are leaking water, and since the brain is enclosed by the skull which provides zero place for it to stretch out, the fluid pushes into the brain, temporarily squishing the pathways and connections, which is extending the negative impact to Mom's verbal and physical skills.  

The lucky thing about this is that a drug called Avastin works to slow the growth of those vessels so they don't leak water.  And the luckier thing is that Mom was already scheduled to start Avastin treatment after her 4 week rest period after radiation.  Dr. Maher recommended Mom take Avastin and temador.  The combination of these 2 drugs will relieve the fluid pressure and also block cell growth of new cancerous cells.  We are very hopeful for significant improvement after a few treatments like this.  I don't know yet how many infusions there will be, we'll update when we know that.

What we do know, however, is that Avastin itself is terribly expensive and it can't be distributed through the nursing home, so Mom is back at HEB hospital for the time being.  The surroundings at HEB are safely familiar, the nurses recognized us when we arrived, and I for one, felt oddly at home.  I know Mom can't be pleased with her new IV, since she's been off that for several weeks now.  Neither does she really like the bed that self adjusts pressure to avoid bed sores.  But she does like the bed with handles on the sides, that help her push up and shift herself around.  And she does like the Starbucks downstairs in the hospital, she enjoyed a nice hot chai latte that Sara and Macklin brought her this afternoon.  

Strange to feel better at a hospital, where people are really sick, than at a nursing home, where most people are not really sick.  I think that again speaks to the health care problem in America. I feel so sad for the people in the nursing home who had no family or friends come by. It was rare that we saw anyone outside our own family visiting, and we had literally moved into the place, and had ample opportunity.  I'd like for the  lonely folks to have a fresh smelling, private room and bathroom, rooms with showers in them, doors with push/pull instead of turn knobs, working call buttons in the bathrooms, air conditioners with clean filters, alarms that only go off in the event of a true emergency, and nurses who are 100% capable of assisting with lifting and physically caring for their patients.  (I think I'm developing a checklist for next time, if there is a next time, in a rehab center.)

I don't know what the next step is for Mom, but let's hope it's with a walker, right out of the hospital and into her own house.  Time, plus Avastin and Temodar, will help us get there.

Building Connections

If every day was like today, wouldn't life be wonderful? Cloudless, cool morning. Hot Starbucks blonde coffee with cream for breakfast, ice water before lunch. Everyone's appointments and work projects and therapies going as scheduled, smooth as silk. Very happy to have today here with Mom.

Mom's therapy yesterday was thorough and exhausting, exactly as it should be. We are all very happy with the program here so far, speech and occupational therapy are good, and physical therapy is fantastic. Michael, the therapist here, is a slight person, but boy he sure knows how to instill confidence in Mom, and he's strong as a horse! Again, I have to say it's a great thing to find people in professions that they absolutely belong in. Those dedicated to caring for people, and helping them get better, when their heart is in it, you can absolutely tell. It shows through in their every movement, and it's reflected on the faces and in the spirits of their patients.

This morning, as Mom has already completed speech and physical therapy, and is awaiting her lunch, she's working on a word-search book. There are probably 40 words to find, and in 10 minutes she's already found 2. That's as many as someone without a crainiotomy would find. She's having no trouble reading the large print in the book, picked out a pretty 'chestnut' colored crayon (and pronounced the color right!) and has circled the words she's found, and crossed them off the list with zero trouble. How amazing is that? The therapist at Reliant said it might be hard to find a single word, and if after a while trying, you need to take a break, do that. So I think Mom is a superstar for being successful with 2 words already!

Special thanks to Mom's friends at school this week. Brandi had brought by a big basket FULL to the brim of cards and gifts a while back. Every day we're bring a handful of cards to Mom so that she can enjoy them. It's a special treat after a long day of working to read poems and silly pictures, and especially the names of her friends. (It's especially helpful for us when there are first and last names on the cards, hint hint!)

One especially funny card was of 2 Easter bunnies talking to each other. It was meant to be a silly card, but it served many purposes...

1. Mom got to read large printed words, and had no trouble.

2. Mom remembered her wonderful friend who sent it, and told us all about her.

3. Mom laughed at the funny bunnies, very cute drawings!

4. We asked mom the inferred questions, why are the bunnies saying what they are saying? She studied the picture and knew exactly why. One didn't have a butt and one didn't have any ears.

This is a very similar exercise to what her speech therapist has her do every day. Questions, pictures, things we all look at naturally and just automatically understand, Mom can visualize but the meaning doesn't always come out of her mouth correctly. But it's getting better, and the bunny card was so fun, because it was made by a friend, and it was exactly what she needed!

Thank you to all friends and family who are faithfully sending cards, pictures, blog posts, facebook messages, etc. Mom is too tired every day to receive visitors, but these little things she can read, have read to her, or can hold in her hand mean so much, and they connect her to you, and they help her build new connections in her brain as she recovers.

Flight Planning

Mom and Daddy, best friends (2005)

My mother is a teacher. She helps stretch students' minds, introduces new concepts to them gently and carefully when the time is right, scripted to whatever the curriculum requires but mindful of their abilities. And when a student has a special circumstance, she works to make sure that student is always given their very best chance at success.

As a result, her kids love and respect her. The emails, blog comments, notes, valentines, huge post-it notes of simile and metaphor exercises are physical proof that one person's efforts to make a difference in the life of a child is returned (just go with me on these numbers) twenty eight-times-seven times 40 some years. My mother is loved by many people.

My father was a fighter pilot for many years, and he knows how to make awesome flying machines of defense help protect millions of people. He has protected our country and traveled the world helping others help themselves. He is a leader and a protector, and he is proud of and fierce in his vocation and avocation.

So these two soul-mates find themselves in a much earlier than anticipated experience, taking the next step in the glioblastoma experience. What to do after rehab.


What we have learned the past few days is quite incredible. We have all heard through political campaigns, news reports, magazine headlines, etc. that the healthcare system in our country is broken. And we are all here to tell you that through this week, we can sincerely say it is. It is a complete mess. What Medicare allows, what medical professionals offer, what patients need, and what guidance families need, has been a large disconnect, causing tears to flood cars at stoplights, unexpected overwhelming sadness in public places, loss of appetites, unfinished Starbucks coffees, and sleepless nights. It is as low as the feeling we had when we learned that Mom's cancer wasn't just bad, it was the worst it could be.

Be prepared was what Mom's neurosurgeon told us on that awful afternoon. That was a bad day. There have been several bad days since then, but our collective adjustment to the badness had, for me anyway, somewhat plateaued until this week.

Being discharged from the rehab hospital due to Medicare coverage restrictions meant we had to find a new place for Mom to stay while she continues to improve her skills with therapy. It was terribly difficult for us, because several of the therapists at the rehab hospital had really started to make excellent progress with Mom. She's much better at recalling the date and year, her birthdate, ALL of our names, names of friends and extended family. She can answer many of the speech therapist's questions with confidence, and if not that, with humor and a gentle wit.

Physical therapy and occupational therapy were making good headway as well; she had learned to scoot from her bed to a wheelchair using a firm wooden board, to "walk" herself in her wheelchair down the hall to the windows, to the puzzle table, to the therapy room. None of this was she able to do prior to entering rehab, and all of these skills had just started to really develop. So moving her out of rehab was really incomprehensible to us. A student just learning her lessons would never be given the test by Teacher Mom before she was ready. Yet that is the unchangeable situation we found ourselves in.

So enter Fighter Pilot Dad. With a passion few have ever seen, Dad took over with the speed and precision of his beloved F-16s. Go find a place for your mom, he said. I will stay with her here. So we did: Scott piloted and I navigated in the cockpit of our (aptly named) Explorer and visited two rehab/nursing homes in the morning, and I took two more than afternoon. Jennifer provided dispatch, flight control support, ground operations, and intelligence. Dad was the commanding officer at systems operations control, and we checked in often.

After post-flight meetings, we debriefed with plenty of reconnaissance yet achieved no resolution. Several hours later, after visiting nurses from the three acceptable rehab facilities had approved Mom's admission and transportation, we reconvened via conference call and chose our landing pattern and destination. Mission complete.

Putting this in sterile flight terms makes this an easier experience to talk about, because in reality it was nothing by the book, it was thinking of who can we trust our Mom with? Where is the best therapy for her? Who can be as good as the therapists Mom had started to develop with? Are we doing the right thing? When will she be ready to come home? That is the hardest question of all.

So with the decision made, Mom was settled in her new facility and room by early evening. She slept on and off, first night in a new place, lots of new sights, sounds, etc. Dad had his first night in a "real" bed since mid-February, having spent every single night right beside Mom in the sturdy-but-tight in the shoulders and frequently squeaky fold-out chair-beds provided in the multiple hospital rooms Mom has been assigned over the last 63 days.

This morning, both Jennifer and I arrived with Starbucks breakfast sandwiches, Greek yogurt for Mom and Daddy, and a latte for Dad. In all of yesterday's emotion, we forgot to check with each other who was going to take breakfast. We were all glad to be together, though; I think we subconsciously needed to see that we had all made it through the night. Although come to find out, none of us slept more than a few scant hours at a time.

After breakfast, Mom was assessed by the therapy groups, met the director of therapy services, and, at enormous relief to us all, likes them. And they like her. And they agree that they can help her. For now, the choice we made seems to be a satisfactory one.

So, perhaps at the future criticism from my Dad for my quote choice, I'm posting here a description of the F-16, from Wikipedia.

The F-16 is a single-engined, very maneuverable, supersonic, multi-role tactical aircraft. The F-16 was designed to be a cost-effective combat "workhorse" that can perform various kinds of missions and maintain around-the-clock readiness.

I think our family is a lot like this. We are a single-minded, very maneuverable, supersonic (emotionally charged), multi-role tactical (family of) aircraft. The F-16 was designed to be a cost-effective (lunches at the rehab hospital were $3.50 a plate) combat (you betcha) "workhorse" (all of us, particularly Jennifer) that can perform various kinds of missions (you name it, we did it this week for Mom and Daddy) around-the-clock (Jennifer has been with Mom 12+ hours a day, Daddy for at least 48 hours straight with no breaks) readiness.

I am so thankful to be in a family that is strong enough to stick together in a really hard situation, smart enough to know the right thing to do, courageous enough to make the tough choices, and tender enough to let the tears come when they need to fall. I am proud to be the child of a teacher who cares with all her heart for all her children, and a pilot who will fight with all of his heart for what's best for Mom, and by proxy, for all of us.

Movin' on up!

...to a deeee-luxe apartment in the skyyy.

Well, not exactly deluxe, but we have moved into another rehab facility. Bear with us as we get settled in, up and running, and a little better rested. We'll post a full update soon, but rest assured, Mom is doing great. She's working hard (as always!), making new friends (again, as always!), and keeping the physical/occupational/speech therapists on their toes.

Love you, love you, love you, Mom and Daddy.

Sweet Treats

Easter 2012

Easter weekend - what a nice several days together! This was surely an Easter like no other we've had before, typically Mom cooks for 2-3 days ahead, has a long shopping list and menu written out on the kitchen counter, held in place by the plate rack and with a pen handy for last minute additions. Probably under the list there's a magazine picture and new recipe that she's including, just trying something different. Her house is always decorated with eggs and bunnies everywhere, beautiful little Easter decorations she has collected over the years, very familiar to all of us.

This Easter was a little different...she's looked through the magazines, she told us to get dinner catered so we didn't have to worry about it, but do go get some things for the girls, and please buy the girls new dresses and shoes.

Shopping for the girls was easy, not as much fun without her there for her spot-on opinion of what looks good, but the girls had new dresses and they looked so pretty. But cater Easter dinner? That's not in our vocabulary, easy as it would have been.

Jennifer and I split up the essentials of the meal and between the 2 of us had the ham, cherries (mom's favorite), scalloped potatoes, green bean casserole, crescent rolls, and cake. Not the traditional Italian creme cake that Mom's made for decades, but a Facebook-inspired Boston cream pie decorated by Mary Claire with a ring of Peeps on the outside. They stuck well to the chocolate, made cutting very easy. It was a pretty and fun ending to a simple but filling meal. Filling to the tummy as well as the spirit.

MC and the famous Peeps Pie

The Easter Bunny visited Dad with his favorite coconut, dark chocolate egg. Mom took a little bite, sensitive to the sweetness and her blood sugar levels (made high by the steroids she is on). Mom loved the egg, so did Dad. Mom said, "That thing must have 50 million calories!" but Dad checked and said it only had 120. Mom's reply? "We'll let's get another one, then!"

The girls enjoyed breaking the rules of no pictures on the walls of this hospital by decorating Mom's windows with the little plastic window decorations of Easter bunnies, the kind you get for $1.00 on sale at Walgreens. The brightness of the flowers and carrots and little bunnies brings cheer to the windows, and today looking out on the foggy morning, it brings continued smiles to the room. (and no one has told us to take them down yet, so up they stay!)

This Easter Monday, Mom has enjoyed Facebook posts, is reading a Southern Living magazine, and offered many thanks to the chef that just came in to take menu orders for tomorrow. As he was here, I found out yesterday that at 5am, Mom was craving a biscuit. She hadn't ordered it for breakfast...what to do...where to get a biscuit in a hospital with pre-ordered meals? Thankful for kind and resourceful nurses again, when Dad told the nurse of Mom's craving, she 'found' a biscuit and brought it right up! Many thanks to that chef and his delicious recipes every day, and especially for the biscuit that brought happiness to Mom yesterday!

A Working Lunch

KK helps Grandma with lunch and puzzles.

Adding a little more stretch to Mom's therapy every day, the PT this morning at 7:30 am came in at breakfast and asked if Mom had eaten yet.

"No, not yet."

"Okay, great! Today I want you to eat using your right hand!"

Mom bravely tried. Valiant efforts were made - success! It's so hard to learn new things. For the past several weeks, since recovering from surgery and adjusting to radiation, Mom has been able to eat many of her meals by using a spoon or fork in her left hand. Before Feb 10th, I'd be willing to say she's never eaten much out of her left hand, save for maybe a cracker and cheese while the right hand was holding a glass of chardonnay.

Lunch was a cheeseburger, tater tots, steamed carrots, and veggie beef soup. All but the soup is fairly easy to eat with your weaker hand, and Mom did a great job managing everything on her plate. Soup with the left hand though...give the poor right hand a break...soup is hard to eat without dripping even when you have a steady dominant hand!

All therapies went well today, we had Catherine along to help today, she was home from school with an upset tummy and, while not contagious, wasn't up to par and went to the doctor for a quick checkup. All clear there, she spent the afternoon helping Grandma with lunch, watching and discussing HGTV shows, and catching up on Facebook postings. Might be worth a playing hooky day for all the girls, they never get that kind of 1 on 1 time these days, and Catherine and Grandma really enjoyed their hours together. It was good for both of them, I think.

In group class, Mom found out one of her new friends has completed his treatments and is going home; another is scheduled to go home next Monday. It's a collective feeling of pride, joy, and hope for everyone in rehab to see a peer "graduate" from the program. We all know how they struggle, and the support they have for one another is quite motivational. They'll all make it, and one day it will be Mom's day to announce she's headed home!

But first, lots more working lunches ahead to get that right hand in the steady position. A wine glass and a chardonnay are ready and waiting!

Did you know I talk in sparkles?

Mom sparkles. She may as well use glitter shampoo, that's how much she shines here. Every nurse that comes in has a kind smile for Mom, and Alicia (the nurse, not the daughter) took particular care and attention with her this morning. She had a wonderful shower and shampoo, and then styled her hair carefully so that the side that has gotten very thin and sparse is covered nicely. We put in 2 colorful clips, and with the purple tshirt she's wearing today, Mom is as pretty as an Easter Egg this morning.

After 2 classes of 1-1 therapy, Mom had her group session right before lunch. In a crowd of probably 20 patients, Mom had a good class of stretches, hand weights, and leg lifts. The therapists are full of energy and spunk, and song! The final exercise, a march, started off with a military-type chant, "Left, left, left right left, left, left, left right left..." and ended with a rousing rendition of She's a Grand Old Flag.

After classes this morning, Mom had lunch and then speech therapy. With sweet Nikole, her therapist, we learned why it's important to work on memorizing words. Say, rose, pillow and heart, those are today's words and their corresponding clues.

1. Nikole point out that a rose is in Mom's room, it's pink, it smells good, it's beautiful, she is going to carry yellow roses in her upcoming wedding.
2. The pillow is small, pink, pretty, and Mom has 2 of them. Nikole has 5 of them.
3. The heart is a shape, it's on mom's quilt, it beats, it's the shape of a valentine.

The idea of these words are to say them now, then go to another topic of discussion, then recall those words 2, 5, and 10 minutes later. This is a lot harder than it sounds. Mom's responses, before saying the word, centralize on Nikole's upcoming wedding (which will definitely includes roses and hearts and a change of pillows!) and really "beat around the bush" instead of going to the target word. Fascinating how she completely understands what the word is but has trouble getting the single word out.

The reason this word-recall game is important, is that mom will be working on recalling more important things more easily, and practice on not-important words will make the important ones come more smoothly. So maybe we will all not be called "Granddaddy" one day. We all know he's her favorite person in the universe. If there was any doubt, just listen to her talk, everything she needs, jokes about, mentioned casually, struggles with...it's all about "Granddaddy." She does say all of our names now, but when our name doesn't come out right, we become "Granddaddy". :)

While Mom concentrates on her words, she frequently says "it's sparkles" or "I'm just talking sparkles" which probably is an accurate description of what's going on with her neurons and synapses, they are sparkling and trying to connect. Maybe one day we'll have a whole little firework-fest and all the right words will come out at the right time.

For now, one sparkle at a time, it's been a fun day.