Pop Quiz results

Mom's long day yesterday ended with two of her granddaughters' hugs and kisses, a cup full of delicious stew, and a piece of yummy cake. We enjoyed watching a nature show on PBS and learning about family habits of a funny bunch of monkeys, and if we hadn't been in this hospital, we probably would have all fallen asleep listening to monkey chatter on TV. But alas, this is a hospital, so a nurse came in to give Mom her medicine, and the PBS peacefulness was disrupted and we exited. Mom and Daddy both slept well.

We're thankful for the healing rest, because the news this morning wasn't great. The MRI results shows the tumor is actually a little larger now than before the last MRI. Sigh. That's not at all what we wanted, but it is what we were warned about. Sometimes the scan taken at the end of radiation shows a scary picture. So we got that.

The plan now is to keep radiation today and tomorrow, Mom's last two days of that. In the last day or two we've been seeing a slight decline in Mom's speech abilities, and she's been a little more confused and forgetful; the right side of her mouth dropped a little yesterday, too. So her oncologist is going to talk with the neurosurgeon and discuss other options now, and he is raising her steroid dosage back to the previous level to help with the again decreased language abilities.

What's interesting, and what the oncologist could not explain, is why Mom is actually 100% better at speech and motor skills now than when the previous scan was taken. The tumor has grown, but so have her abilities. So that's not logical. I suppose brain tumors aren't supposed to be logical, they are mystical, frightful beasts that can sometimes be managed but certainly not controlled.

I'm choosing to believe the unaffected part of Mom's brain is compensating for the beast. It's putting up a good fight, and it's telling her she can grasp an Oreo cookie, and she can clasp her hands together. She can raise her leg, rotate her foot, and she can wiggle her toes. None of those things could she do three weeks ago. Focus on the good news, the progress she has made.

Ending on a good note, Mom really enjoyed two letters from former students this morning. Caroline had received them in her Sunday School, from friends of a friend. I love how that network works. :) Mom was so happy to hear from these girls, how they are doing in school, how their families are, what their college and career plans are, what their spring break plans are. Thanks, girls, for sharing happy thoughts and stories with Mom. She loves you so much!

Wednesday's pop quiz

We have three radiation therapy treatments left, including today, and Mom's oncologist seems pleased with her progress. He said that we'll continue lowering her IV steroids dosage today and soon move to the pill form. Next week she'll get a break from the Temodar, the chemotherapy pills she's been taking, and later she'll move to a schedule of a higher Temodar dosage "boost" for one week per month.

All of this presumes a good outcome from today's MRI. Since she's nearing the end of radiation, it's time to take a picture of her brain and see how the therapy did at reducing the tumor. We've been looking forward to this week for a while, and now that it's here I'm almost as nervous as the day of Mom's surgery. We're anxiously hoping and praying for a good outcome, so that we feel okay about moving on to rehab.

Keep those prayers coming - we know they're heard!

How do you get to Carnegie Hall?

Our days in the hospital are basically the same - eating, practicing speech and movement, radiation, and naps. Yesterday was an anomaly because of the approaching storm. It was kind of fun to watch the radar and guess when and where it would hit. We delivered extra snacks and dinner early to Mom and Dad and skedaddled home around 4 p.m., assuming the high winds and giant red spot on the radar meant the storm was near. It didn't hit until almost 6:30 pm, and it wasn't nearly as bad as we heard it would be, but it still brought a little excitement (and rain) into the day.

Practice, practice, practice

As of this morning we have only four more radiation treatments to go. Mom is having a pretty good day.  It helps that she is sleeping better these days, waking up only once or twice with discomfort. She can't roll over on her own, so once a nurse helps her to readjust she goes right back to sleep. The better sleep may be a result of lowering the dosage of IV steroids, or it may be because she's getting her strength back and is working hard at physical therapy during the day, so she tires herself out and earns a good night's sleep.

During physical therapy today, Mom's therapists (occupational and physical) helped her to stand for a little while with a cane. She was happy to wear shoes for the first time in over a month. Standing was extremely hard work; her right leg doesn't hold her weight, her muscles have atrophied some from disuse, and her balance is loopy. It felt good to stand for even a few seconds, though, and then she was able to move into a wheelchair and go for a short stroll, using her good left foot to nudge the wheelchair along.

When she returned from the stroll, she was red-faced, hot, tired and emotional. We were worried for a brief moment as she complained about chest pains, but her blood pressure was normal; it was just exhaustion, and ice water and a cool washcloth helped.

If the physical toll of pushing her muscles to respond is hard to bear, the emotional toll is even worse. She knows that she's lost a lot of function, even if only temporarily, and it's made more difficult by her foggy brain and short-term memory challenges; when she is tired, she gets teary and wonders why she can't get things to work as they should. We remind her that practice makes perfect, her strength will come back if she continues to work, and we're all here to help her.

Alicia found the perfect analogy. "Mom, do you give your students a final exam on the first day of school?"


"No."


"Right. They don't know enough yet, so they practice. And they don't know it the next day, or the tenth day, or in a month. But you teach them, and they practice, and one day they'll be ready. So you have to practice, too, and one day you'll get it. Okay?"

Our favorite teacher understood, smiled and nodded. She'll get there.

Luck of the Irish

It's Saint Patrick's Day, and visitors and nurses at Harris Methodist HEB are decked out in green, wearing sparkling clover pins and plastic beads. To celebrate, Mom challenged Jennifer to several games of solitaire, Pac-Man and Angry Birds on the iPad. She particularly enjoyed Pac-Man, chanting, "Go! Go! Go! Get him!"

Mom's garden is decked out in green as well. One of Mom's favorite hobbies is tinkering and digging in her garden, and it shows. We have a lovely yard, and the backyard is an oasis of purple, pink and green around the sparkling blue pool. Plants and trees are budding, and the daffodil bulbs she planted are faithfully rewarding us with bursts of buttery yellow and lemon. Other plants offer purple, lavender and bright fuchsia blooms.

 

Dad took a few hours out of the hospital today to shower, start the taxes and run errands, including a stop at the Home Depot to pick up fertilizer. When he returned, he smiled at Mom and said, "Guess what I bought?"

Wide-eyed, Mom grinned and said, "A new house!"

Dad was caught off-guard by Mom's humor, and he smiled widely and laughed.

Turns out he bought tomato and poblano pepper plants for Mom's garden, a nod to the approach of spring and something to look forward to: fresh vegetables for summer salads and barbecued chicken served al fresco by the pool. It's important to have a goal, and enjoying a salad with a nice glass of Riesling on a warm summer evening sounds just about right.

This is where the newly-purchased tomato and pepper plants will go.

Funny lady

Suddenly the smell of popcorn is turning Mom's stomach. Yesterday she craved it, so Dad bought her a box. Today he offered her some, and she turned her head away, "No, no! I can't stand the smell. I have to stick something in my nose! It stinks!"

Mom may struggle to find the right words sometimes, but other times her sense of humor comes out loud and clear.

She's been enjoying all the jokes people have been sending in. Keep it up! We'll have enough to publish a joke book one day.

The latest news

The soul would have no rainbow if the eyes had no tears.

This morning the weekend oncologist-on-call (new to us and a nice guy - very energetic) gave Mom a great report. For several weeks she's been on a high dosage of Decadron, which helps reduce brain swelling caused by the tumor and the radiation, but it can leave her at risk for serious side effects. She's already experiencing severe bruising and thinning, dry skin. He said she seems to be tolerating the slightly lower dose of IV steroids, so it's time to dial it down a bit again. We think her speech may be a bit more garbled than before the dose was lowered, but he's confident the aphasia will improve with time.

Also, he reminded her that she only has five radiation treatments remaining, so she "graduates" next Friday, 3/23. At that point, if all goes well she'll be clear to move on to an acute rehab facility, where she'll receive three hours of intense physical, occupational and speech therapy daily to regain the strength and skills lost in the last five weeks. (Has it really only been that long?)

I've been wondering about the end of radiation therapy - as difficult as it has been, we still cling to it as the key to her regaining health; before radiation, the tumor grew so quickly, and she declined so rapidly. Radiation therapy and chemo brought her back to us a little at a time. So I asked the oncologist what we could expect after the radiation ended. Was there a possibility we'd see another decline?

"Oh, no," he said. "Some of the cancer cells are dead but don't know it yet. So we'll see continuing improvements and effects from the radiation for some time. Probably in six or eight weeks we'll really see an improvement."

It was music to our ears. She's doing well now, and if this was as good as she got we could handle it and adapt. But to hear that she could continue to improve and grow stronger was a wonderful ray of hope. It doesn't change the overall prognosis, but it does mean that we can hold on to the hope that she'll come home and enjoy her garden, family and life.

Maybe there is a pot of gold at the end of this rainbow after all.

A breath of fresh air

It feels good to sit up.

Yesterday, Mom left the hospital for the first time since February 10. She sat in a wheelchair (also for the first time since her arrival), and Dad wheeled her downstairs, through the chapel and into a quiet, private chapel garden with a fountain. The rain clouds were building, and the sun's rays shone through occasionally. It must have been nice for Mom to breathe fresh air and feel the sun on her face for the first time in weeks.

Dad and Mom

Side effects and the countdown

Side effects are really a misnomer. Because you can't really feel the main effect of a drug (the healing), all you really notice are the side effects. Maybe we should call them "noticeable effects" or "all over awful effects", because believe me, side effects are never good. Side effects never improve your skin or make your teeth whiter or hair glossier.

No, side effects are brutal, and Mom is starting to feel them pretty badly. She's been on a high dosage of steroids and chemotherapy for a number of weeks, and now she's in week three of radiation therapy. Between the three, she's suffering crippling exhaustion, hot flashes, shaky hands, increased appetite, brightly flushed skin in some areas where the radiation beam is aimed, and terribly dry, paper-thin skin on her hands. Not to mention the terrible hematomas on her arm from an extremely untalented phlebotamist.

Today she made us all nervous when we noticed swelling in her face. It turns out this, and the swelling in her right hand and foot, are also on the list of notorious side effects. Weight gain is to be expected in patients on high steroid doses. It's not uncomfortable, thankfully, and we can help by giving her a good, healthy diet. (It would be nice if the hospital would help us out, there. Sugary danishes for breakfast? Really?)

Only 7 more radiation treatments to go! Way to hang in there, Mom - we're all so proud of you.

Counting sheep

Just a quick note: Mom really needs to catch up on sleep today, so if you're thinking of stopping by to visit, please hold off until tomorrow. Her treatment and therapy schedule changes daily, so please do text one of us beforehand so that we know you're coming. We'll let you know whether it's a good time. Thanks!

Monday's update: part 2

Courage is grace under pressure. - Ernest Hemingway

Yesterday I read a story about new research showing definitive proof that a parent's love is key to brain development in children.

After taking into account a whole range of factors that can affect hippocampal size, the researchers found that children with especially nurturing, caring mothers, based on their behavior during the laboratory stressor, had significantly larger hippocampi (plural of hippocampus - you’ve got one on each side of the brain) than kids with mothers who were average or poor nurturers.

If I had paid attention in my high school biology class, I would have learned that the hippocampus is responsible for a person's ability to handle stressors and to store personal memories. Small hippocampi makes one less likely to show grace under pressure, and sadly, that pressure can even shrink one's hippocampi.

In addition to protecting us against brain illnesses, we all need big hippocampi because this brain area, while not much bigger than your little finger, plays a disproportionately large role in how you will be able to handle the stresses and strains of your life, and how you will remember your life when it’s all said and done. This is so because the hippocampus is crucial for our ability to form and store personal memories. It is also of central importance for restraining the body’s stress and inflammatory responses, both of which can induce significant damage to bodily organs and the brain if not properly reined in.

Children who grow up to have small, underperforming hippocampi are less able to handle stress; that stress in turn shrinks their hippocampi - leaving them even more at risk for illnesses and depression.

Parents only have their children in their immediate care for around 18 years, but their love sets them up for success for a lifetime.

Two sets of loving parents, Ken and Judy
and Sara and Charles (with son, Macklin). Christmas 2011.

Luck and love

These days we spend a lot of time thinking about how lucky we are to have been raised by such good parents. You couldn't ask for a more loving mom or dad. Mom's new adventure with brain cancer is about the biggest stressor we can imagine, and it's one that we never anticipated. We can handle it, though, and carry Mom through the rough times thanks to our loving family, supportive friends, and our big, healthy hippocampi.

Coda to the radiation story

Edwards Cancer Center is the hospital facility that provides the radiation therapy, and we had a good experience with them until now. The staff have been kind, and the lobby is light-filled, cozy and offers a family lounge with puzzles. Patients and families work on a puzzle while waiting, but appointments last just 15-20 minutes, so we only get a few pieces placed at one sitting. When we return the next day, the puzzle has more pieces complete than when we left it, and the picture slowly comes into focus through the collaborative efforts of strangers. It's both a solitary and communal activity to pass the time.

Usually we look forward to radiation, but the last several days have just been one aggravation after another. Mom's appointment was canceled last Friday so they could perform a software upgrade. Apparently software upgrading is an activity they are unable or unwilling to do on a weekend when they are usually closed, so patients needing this critical therapy were told to simply wait.

And wait we did, more or less patiently, until Monday. As Mom's appointment time approached, she was told that there would be a slight delay - the radiation machine had "gone down." (Did they try rebooting it? Sorry, that's an old IT joke...) The nurse told us Mom would be wheeled to radiation later in the afternoon.

So the time passed. And passed. And then it was dinnertime, which came and went without any word from the folks at Edwards Cancer Center. Our patient nurses were losing their patience, and calls to the Center went unanswered.

At 6:15 pm, we realized that waiting patiently was perhaps the polite thing to do, but it was achieving exactly nothing. I suggested calling Mom's oncologist, and Dad agreed but suggested that we (Jennifer and I) go down to the Center and see how much longer we would have to wait for radiation.

When Jennifer and I arrived, the Center was open and brightly lit - but there was no one to be seen. The front desk was abandoned, with the phone unmanned and CDs of patient records sitting on the desk for anyone to take. We waited, knocked on the doors, spoke loudly, and still no one came. I called the Patient Services Representative line, which forwarded me to an answering service where I left a message for the radiation oncologist-on-call.

Where are your people, and why have they left a patient with glioblastoma multiforme waiting?

Meanwhile, Jennifer slid past the "Patients and Staff Only" sign and went in search of some answers. She found a technologist, and we asked her how much longer we would have to wait.

Oh, the machine was down for over an hour this afternoon, and we got behind. We can't catch up with everybody. We'll have to start again tomorrow.

You can imagine our response. We asked whether they prioritized the waiting patients to put the most critical ones first? (No.) Couldn't they just fit in one more patient? (No. It was past closing time already, and the front desk staff had left for the day.)

That was the moment our hippocampi kicked into overdrive. To make a long story a little shorter, let's just say that one of us cried, the other one got really mad, the radiation oncologist on call was consulted, and they decided they could, in fact, manage just one more patient.

So Mom got her radiation therapy around 6:45 pm on Monday, and we're back on track for the remaining two weeks.

And that, my friends, is the kind of perseverance taught to us by our Mom.

Monday's update

Faith is an aptitude of the spirit. It is, in fact, a talent: you must be born with it. - Anton Chekhov

Keeping the faith

Mom's neurosurgeon stopped by and was quite the cheerleader, raving about her progress! He said she is doing very well; he can tell from her movement and from her speech that the tumor is shrinking! Yeah! We were thrilled at the good report and happy to see Dr. Singel; we appreciate his optimism and commitment to using the "big guns" (his words) on Mom's cancer.

Mom's words are much more clear and steady than last week. Her thinking is still faster than her mouth, which does frustrate her sometimes, but she recognizes when that happens, deliberately slows down and tries to get the right word out. Or, she closes her eyes and thinks, and then says, "I don't know, I'll have to do it later." The easy phrases come out simply; the harder words and unique thoughts are more difficult. There is still good news in this, though. The neurosurgeon confirmed that this speech pattern is one that can improve with speech therapy, and it's not a permanent condition. So we have more goodness to look forward to.

Another success is Mom's arm exercises. She is pulling strongly on Dad as he helps her move her arm towards her nose and then push back. She's counting perfectly up to 10 and to 20 during her exercise, and she's holding her hands together while she works her muscles. The therapists have said that her hands will teach themselves what to do, what one hand does, the other will want to do. This is interesting, because in years of Suzuki lessons with the girls, our teachers have said what the right hand does, the left hand automatically follows (and vice versa) so you have to consciously think of that when you're learning to play the violin and cello. Mary Claire "practiced her cello" today while working through Mom's exercises with her. Everyone needs a little stretch in the afternoon and working out with Mom makes it easier and more fun for all of us.

A few challenges

One difficult spot today was getting another IV put in. Mom's poor, sad, overworked veins. They are tired of being poked and pulled and filled with all kinds of medicine. After many valiant attempts from the assigned nursing staff, and a heat pack to try to plump things up, and a full hour of trying, there were many tears but no success. Finally, a smart person decided to call the local expert. She came in, took a look around, gently prodded a few times, and then quickly put the IV in with success. After a few strongly worded suggestions, the charge nurse agreed that Mom will only get new IVs from the expert from now on. A special note on her whiteboard that says "Contact Expert." (Okay it doesn't really say "expert" but I can't remember the exact acronym of the very special nurse.)

The other unhappy thing about today is that Mom's radiation (as of 5pm) hasn't taken place yet. The machine is down. GRR! This is the same machine that purposefully taken down on Friday for a software update. So we lost Friday and probably Monday's radiation. Mom eagerly anticipates each treatment, knowing that they are helping shrink this tumor as much as possible. Not having a treatment, and not finding that out until late in the day is more than frustrating. I imagine it would be a lot more disappointing if Mom weren't making such awesome progress otherwise. She's working so hard to get well, and her efforts are paying off despite the interruption in the scheduled treatments. We will be happy to get back on track, though, so we can see what other new wonderful things Mom will say and do this week.

This weekend Mom enjoyed lots of restful naps, sound sleep, many hugs from her family, and at least two nail-bitingly exciting ACC basketball tournament games. She cleaned her plate (except for the nasty carrots and green beans) at every meal, and she enjoyed her Blue Bell strawberry ice cream. And we all know ice cream makes everything better.

Happy Saturday!

Great news to report from the Land of No Doze:

Last night, after not having slept for two nights in a row, Mom finally got a good night's sleep! A dose of Benadryl helped ease her into dreamland, and, boy, do we wonder why a nurse or doctor hadn't suggested that before. This morning, she woke up happy, talkative (with clearer words!), and hungry. She ate breakfast and then a big lunch a few hours later, watched UNC rise up and beat N.C. State in a nail-biter of a basketball game (I'll bet the nursing staff wondered where all those cheers were coming from!), then took a deep nap this afternoon. A comfort-food dinner and a peppermint-lotion foot massage later, she drifted off to sleep again.

Yes, peppermint-lotion foot massage. We also give her eucalyptus backrubs and lavender hand massages. I think the nurses are growing accustomed to our little rituals. (Perhaps the aromatherapy helps them relax, too. I hope so.)

We pamper Mom! Seeing her smile and laugh is worth more than gold. And, hey, nobody ever said you can't have fun in the oncology unit.

Sleep and relaxation do wonders for people. It's a huge relief that her speech and right-side motor skills are improving. These things become obvious when she's unfettered by fatigue. And, of course, it is wonderful to see her in such a great mood. That lifts all our spirits, and we can sleep better at night, too.



***



More happy news:

Last night, a hospital volunteer delivered a beautiful package from Mom's students. We were enchanted by their messages and the care that they put into creating it, and we were touched by their thoughtfulness. I hope they know how much it means to her.

 

A gift from Mom's students brightened up a tough Friday.

We love you, too, North Richland Middle School!

Then, today, another volunteer delivered a packet of messages that came in through the hospital's "Email a Patient" service. Mom just beamed as we read the notes of support, encouragement, and love from our family and friends.

It is overwhelming, the amount of love that continues to pour in for Mom. We are blessed.

Sad moments and angry birds

Wednesday's big afternoon remains the highlight of our week so far. Thursday and this morning, Mom has struggled with a sore throat, a side effect of radiation. It took a while for us to figure out that was the problem; she was in pain while trying to eat, and she especially disliked hot liquids. We thought it was indigestion, but finally Jennifer noticed Mom was waving her hand in front of her mouth, and she realized that it was a sore throat. Lozenges and cool soft foods like yogurt and pudding seem to help.

Then yesterday she had an IV moved from one hand to the other arm, and the nurses struggled to get this one in due to the fact she's had so many IVs in the past few weeks. Her veins are tired of the IV medications, so they harden and become ineffective and painful. One arm is covered in dark purple bruises from where an apparently untalented technician took blood for routine lab work.

It was a very difficult morning, and the past two nights it's been hard to relax and sleep. This means neither Mom nor Dad have had any rest.

Also, she's had a headache, which seems such an insignificant thing comparatively, but really, it makes everything harder. So we're all a little down about these last two days.

We're also down because the radiology unit is closed today; they are updating some software. Not happy about that, either. It seems crazy to close a unit that is critical to cancer patients, instead of just doing the software upgrade over a weekend when they are already closed. Apparently Mom has to wait until Monday for her next treatment.

Mom is not disappointed about this, though. Radiation is exhausting. When we said her appointment was cancelled today, she said in wonder, "It is? Yay!"

A few bright spots

On this cold, wet, miserable day, we can still find a few moments of hope and enjoyment.

1. Spring Break starts! Granddaughters will be able to spend more time here and will have no evening activities for an entire week. So picnic dinners in the waiting room are on the agenda.
2. Grandma Marlene Berg is going to California to give grandson Macklin and son Charles all kinds of hugs, home-cooked meals and love.
3. Today's nurses are great and gave Mom an in-bed bath, shampoo, peppermint lotion foot rub and a eucalyptus lotion back-rub. Maybe now she'll be able to nap!
4. Mom's occupational therapist, Stacey, suggested she practice typing on her computer, clicking letters to get some mental exercise. So after lunch we tried having Mom type on a simple Word document on a laptop, but she had trouble hitting the keys; instead, she wanted to touch the screen. So we switched to her iPad, and she automatically tapped on the Angry Birds app and started to play. It takes enormous effort to hit the target with her finger, so she didn't set any high scores, but she was smiling and chuckling at the silly birds and their chattering.

Sara helps Mom with her letters.

Angry Birds needs a new version: Angry Birds Oncology Ward.

Sleeping privileges

Dad's Valentines bear (Val) for Mom

Last night must have been a doozy...it makes me sad to know both my Mom and dad were awakened from sleep by a loud knock on the door by a respiratory therapist who was following orders to give a breathing treatment.

I guess maybe if you work here - a place that is well-lit 24x7, with many people on sporadic sleeping schedules, and coffee available at every conveniently located waiting area - you might forget that when it's dark outside most people are sleeping. Some at 8 pm, some at 10 pm, but nevertheless, sleeping. The therapist last night surely will never forget the response he got when he woke Mom. I hope he thinks twice before he bangs on all his patients' doors tonight.

Mom's door will not be one of them. Hers is sporting a new sign ("Sleep Privileges"), which until today was a mystery. This means that between the hours of (I think) 10 pm - 7 am she is not to be awakened for any vitals, bloodwork, breathing treatments, etc. if her door is shut. She has "Privileges!" Lucky her. If we could have only known that this was a possibility, we could have avoided last night's trauma.

Hollywood is calling

Today Mom is full of word salad. Finding humor in this, Sara and I are having fun with it. What else can you do? Mom could get so frustrated and sad at her inability to fully communicate, but keeping her smiling, laughing, rolling her eyes, and being playfully exasperated at us is a better way to handle a stressful situation.

Today, we are deciding who will play Mom in the movie version of her life. Sara picked Susan Sarandon, excellent choice. In Mom's older years, she picked Sophia Loren. We decided she will have to dye her hair, but that's okay, the role is perfect and surely she won't mind.

Then we thought about Jackie Kennedy for the 30-40's, because yes, Mom looked just like her when the Kennedys were in office...so we think Sandra Bullock will be good for that. But Sara said she was too old, to which I took great offense because I think she is my age or even younger. And then the conversation went downhill from that, and we had Mom really into the conversation, it was a lot of fun....

...until a lady came in to draw blood. Apparently she found no humor in our room; she hardly spoke, did her job quickly and quietly and left. I think she was afraid of our not-so-quiet laughing and poking fun at each other while she poked at Mom. Ouch, in two different ways.

After blood lady left, we got back into our happy modes and made some phone calls home. First to Mom's brother Ricky Whitley, and then to her aunt Mary Louise Daughtridge. Mom had nice conversations with them both, telling them how much she loved them, and they told her how much they loved her. Ricky is planting strawberries and cleaning out the garden; Mary Louise is printing this blog for Mom's mama and daddy to read, and she said they are really enjoying it. So hello via the blog to our wonderful North Carolina folks. We miss you and love you, and we are glad to be electronically connected to you.

Studying Mary Claire's masterpieces

Interesting tidbits

Listening to classical music today, mostly orchestral, was pleasant until a piano piece came on. And then it must have hit just the right spot, because Mom sank into the magic bed with a sigh, closed her eyes, and started conducting with her left hand. (Note to self, more piano music.)

Mom said to Mary Louise, "I'm working hard!"
Mary Louise responded, "Of course you are! You're a Whitley!"

Mom was asking for her whole family today and counting them on her fingers. Sara notes that this is what she does when she's shopping for Christmas presents. Mom has trouble with numbers right now, but she knows how many presents to buy, and thus how many people she's wanting to be around her.

Why we're lucky

One last little thought for now. As I was driving to the hospital today, I saw a car with New Mexico license plates, which made me think of when we lived in Clovis, NM, and took car trips to vacation in the mountains north of Santa Fe. It made me think of all the little towns we passed along the way in our white and orange Midas Mini Motorhome, towns that don't have big hospitals and doctors that specialize in glioblastomas, don't have people that carry the title "neurosurgeon." What do they do when they receive a call from their mom's co-workers saying she is talking funny and can't drink her Starbucks (or maybe Circle-K coffee, since in my mind there are no Starbucks in rural New Mexico), and can't type in her computer password? Do they send them home with a Tylenol, do they send them to the hospital, and what does a country doctor do with a brain tumor?

I feel we are very lucky to live here, to have what we have, and to be surrounded by uber-smart, talented, caring professionals who can help us manage this.

And today we are lucky to have sleeping privileges.

Jennifer helps Mom work out her legs and feet.

Mary Claire's art wall

Spirit boosting decor

Field trip fun

The cool thing about being with Mom on a weekday afternoon is you get to see the field trip excitement take place. She's so happy when 3 pm comes around, the energetic young guy hops in and visits, unplugs the magic bed, and rolls her down to radiology with faithful and ever-present Dad right alongside. Mom is at her energetic peak when she sees her driver arrive, and she's ready for her treatment.

While she's having her radiation, her wonderful nurse came in to see if she could take care of me and Dad. We have everything we need; we're a fairly low-maintenance kind of family. The one thing we need is Mom to be back home and healthy, and we know the nurses are doing everything they can to help make that happen.

After radiation, Mom has a funny fishnet-stocking type pattern on her forehead, needs a cool cloth to help her feel better, and is very tired. She enjoyed a lime sherbet for being a good patient and was ready for a little nap. But wait...there's blood pressure and temperature to be taken...okay, now she can sleep.

Nope. Time for a blood sugar test and prick of the finger. The nurse asked, "Which finger do you like least?" and Mom clearly pointed to all 10 of the nurse's fingers! Never one to lose her humor...okay blood sugar done...nap now?

Nope. Time for a breathing treatment, several minutes of a test that you should be able to do while sleeping but for which you are awakened. Sigh. Nap now?

Yes. Sign on the door, blanket on, teddy bears and pillows in place.

Better rest while you can. Dinner comes in 20 minutes.

Monday morning politics

Mom's having a great day and is tolerating her chemo pills even without the anti-nausea drugs, which is great news. (They make her woozy, so it's nice to be off them.) She's feeling fiesty today, telling the nurses they're doing a good job and directing Dad to STOP feeding her those nasty carrots.

Watching the afternoon news, she clearly dislikes what she's hearing.

"Oh no! That Putin? He's stupid! Gosh."

Physical therapy went well this morning, and Mom worked hard - she successfully shrugged both shoulders evenly, and then we asked her to pull her right hand towards her mouth. She struggled with it, and then we said, "Pretend there's a glass of good cabernet in your hand. Now pull it towards your mouth." She grinned, pulled her hand in and slurped.

Clearly Mom just needs the right motivation!

Living in the moment

Good friends, Judy and Judi

A mother is she who can take the place of all others but whose place no one else can take. - Cardinal Gaspard Mermillod

One interesting thing about life in a hospital is that time simultaneously slows down and speeds up. Each day we wake up and look for things to raise Mom's spirits and to pass the hours until her radiation appointment (2:30 pm Monday through Friday.) We've seen real progress in Mom's condition since radiation began just over a week ago; after every appointment, it seems like she has more energy, clarity, and better control over her speech. Late this week she began to get some feeling back in her hands and feet, and by Friday she was lightly squeezing our fingers with her right hand. So we're eager to keep moving forward with the radiation and chemo - eager to see Mom return to her usual happy, talkative self.

On the weekends, no radiation is scheduled, so we entertain Mom with silly jokes, music, and brief visits from grandbabies and friends. Meanwhile, we count the hours until Monday's radiation appointment again. This weekend was particularly busy with a visit from son-in-law Charles and grandson Macklin, who brought good cheer to everyone but especially Sara (aka Mommy.) The weekend went by all too fast.

Without the usual routines and rhythms of life, we have nothing familiar by which to track the progression of hours and days, so time slips by quietly and quickly. We notice its passing only when we glance at a calendar and stop in shock to see that it's already March. Roses that were just beginning to bud when Mom entered the hospital on February 10 are now bursting with bright heavy blooms, and daffodils that were just pushing out of the ground are already showing their first blossoms.

So, as spring approaches, we take photos of Mom's flowers, watch UNC-Duke basketball, and read every magazine in the hospital. And we count the days left in her radiation treatment, and we try to be grateful for every moment.

The first daffodil

Signs of spring

A new routine

It is only when we forget all our learning that we begin to know. - Henry David Thoreau

One of the saddest things about a sudden illness is how quickly you're thrust out of your usual comfortable routine. Suddenly the well-worn path you travel is no longer an option. Everything changes, from the food you eat, to how you spend your day, what you wear, and the sounds you hear at night as you try to find comfort on sheets that aren't your own. Like a friend, the loss of routine is grieved, and you ache to return to it. You long for normalcy.

Twenty-one days into this new adventure, we're finally starting to create new routines. Dad was the first to find his groove: he leaves the hospital in the morning and is gone for only enough time to shower, change into fresh clothes, pay some bills and head back. Otherwise he's never more than a few feet from Mom, and what sleep he catches is done on a fold-out chair in her room.

Alicia, Jennifer and Sara split up the day, with Alicia taking the earliest shift and delivering coffee and breakfast to Dad. Jennifer and Sara follow with the mid-morning to early-evening shifts, taking turns stepping into the lounge area to do some work. (Thank goodness for wireless access and understanding employers.) Visits are made to Starbucks at least twice a day. Dinner is provided generously by friends, and we often enjoy it together and then head back to the hospital to deliver some to Dad before Mom falls asleep around 9 pm.

Mom's day is filled with activity, from the morning of multiple pills, injections and IV drips to the afternoon of occupational therapy, radiation and visits from her much-loved grandbabies. Sometimes she manages to grab a nap, but the steroids and general hospital interruptions make it difficult to relax. She has some of her favorite routine comforts available - her preferred face soap, lavender hand lotion, an iPad loaded with her favorite music - and we keep her chuckling with the wonderful jokes and cards you're all sending. Nevertheless, she asks daily when she can go home, and we know she's counting the hours until she can feel the familiar hum and warmth of the home she's known for over 20 years.

We celebrate some progress toward normalcy:

• Macklin and Charles returned from California for another visit. (Sara/Mommy may not let Macklin out of her arms for the whole weekend.)
• Mom's speech is getting better, especially late in the day.
• The neurosurgeon said Mom doesn't have to give up wine. "Sure, why not?" he said. "Just don't drink the whole bottle. But if it helps you to relax, then enjoy." (We cheered.)

And maybe best of all, Mom may be released soon to a rehab facility or skilled nursing facility while she regains her strength. The move is complicated by ridiculous Medicare rules that make it difficult for rehab facilities to host patients undergoing radiation therapy, so we have some homework and searching to do before she can move. 

Still, we're encouraged and determined - one step out of the hospital is one step closer to home.

"What the heck is that?"

Today Mom is getting more words out and actively participating in occupational therapy, learning to use her left hand better, stretching her right arm and leg, and improving her balance by sitting up in the bed. (Her muscles are tired after so much bed rest, so she'll have to work on her core strength for a while.)

With all this work, she was hungry at lunch but not thrilled at what was served. Pointing to the plate, she asked, "What the heck is that?"

We thought about posting a photo of her lunch, but really...it's probably best forgotten.

Leap Day

Fall down seven times. Stand up eight. - Japanese proverb

It's not a fancy salon, but warm shampoo still feels good.

Seems appropriate that on Leap Day, Mom should leap ahead with progress. I'm thrilled to share some of our breakfast conversation from this morning. When we commented that she was doing well using her fork to poke her french toast, she said, "Am I?" She said "thank you" to Dad when he cleaned her eyeglasses. She said "eyes" and gestured to them when she wanted her glasses on, and she said "suitcases?" when she saw Peter's bags this morning, prior to his flight home.

One funny...she said "Peter" and gestured as if she was brushing her teeth. I asked her if she wanted Peter to brush her teeth - she made a silly face and said, "No!" and then gestured again. After a few interpretative guesses, we figured out she was telling him that he looked nice. :)

It's so exciting to hear these words come out in addition to a lot of word salad, as her neurosurgeon says. The words that come out are perfectly clear and are little joys to our ears.

A little step back

With any kind of brain trauma, you're bound to experience some physical side effects, and Mom is no exception. The right side of her body is not cooperating, so her right arm, hand and leg aren't working yet. She's starting to experience swelling of the right hand, which is common for people on chemo, and she's on a high dosage. Fortunately we can help by light massages and keeping her hand propped up on a towel.

Late Monday she started displaying signs of confusion during multi-step processes, like teeth brushing or using utensils to eat. The nurse said it's not uncommon for patients with brain injuries to have trouble with multiple steps, so we're trying to give simple instructions and not overwhelm her with lots of voices or faces at once.

We're hoping this improves with time as more radiation and chemo zaps the bad cells in her brain.

One big step forward

Mom's wall of art in the ICU

All teachers need their white boards.

Mom has moved from the ICU to a normal hospital room, and she has all of the mandatory ICU monitoring tethers removed. Her heart rate, blood pressure, blood counts, respiratory, etc are all looking great. The only thing that is wrong is this glioblastoma! One of the doctors who stopped by this morning said everything is working like it should, and we're using the right medicine to address the issues in the brain, so that plus a positive attitude will do a lot to help Mom feel better.

To help achieve that, Mom is enjoying watching the weather report, a sunny week in Texas for the foreseeable future, says "Wow" when watching the TV chef season a large roast, and we're sharing all the jokes and notes that you're sending us. It's all good news this morning, and I feel like she is having a personal "Leap Day" today.

Visitors

While Mom is on chemo, her immune system is not at its best, and lots of sleep is very important. We'll let her decide when she's ready to see visitors.

Please feel free to call or email us anytime if you want to stop by, and we can check with her on how she's feeling. Thanks to everyone for your understanding and support!

Radiation gives us a few words!

Mom's yellow roses are tinged with pink.
The rose bush was a Mother's Day gift from her girls years ago.

After the weekend's quiet, turning into occasional frustration, and the growing impatience while waiting for radiation, 2:30 pm yesterday was a welcome time. Mom recognized the guy who takes her on her radiology field trip, and she was so happy to see him! He is a young, smiling guy who has a tough job: taking people who are really sick to a treatment that may or may not help them and will probably make them feel a little worse before it makes them feel better. And yet he does his job with a spring in his step and a smile on his face. It brightened Mom's day and she positively reacted to his presence. YAY for people who are in the right job; we are thankful for them.

Last night Mom said "yes" a few times, very clearly...and this morning, she said "wait just a minute" clear as a bell. She's still mostly gesturing (we're getting better at reading what her pointed fingers mean) and having clear facial expressions to let us know what she's trying to say.

:) means I'm happy to see you
:( means I'm so mad I cannot say what I want to say
:{ means I do not want any more of those nasty powdered scrambled eggs
:] means I will tolerate you putting in yet another iv site but I am not happy about it
;) means I love my grandchildren and their cute pictures that are all over my wall
xoxo means I love you, and there's a whole lot of that.

Today for the second time, Mom's anti-nausea medication that she takes prior to the chemotherapy pills has put her right into a nice, deep sleep. This means her body can metabolize and absorb the chemicals it needs to, and when she wakes up for more radiation today, it will have an even greater effect. I'm very much looking forward to what words she says today.

Smiles from Mom's friends, the NRMS Sunshine Committee!

Happiness is homemade banana nut bread.

A wonderful homemade card with friendly faces that make Mom smile.

Thanks so much, friends, for the wonderful baskets and cards and food you're providing for Mom and her family. You have no idea how good it feels to relax about the little things while we are taking care of Mom and this very big thing. She loves the cards, jokes, poems, letters, pictures...it's a wonderful gift you're all giving Mom, your friendship and love in tangible forms. She and all of us can feel the prayers and the support, and we appreciate it more than you know.

Appreciating the little things

Gratitude is an art of painting an adversity into a lovely picture. - Kak Sri

We were hoping for a morning radiation treatment today. It is scheduled, however, for 2:30 pm today. So we wait some more.

I'm very impressed with a few little things this morning, however.

1. Mom can eat oatmeal and grits at the same meal. The texture of the hot cereal is good for her and she can gladly enjoy both bowls that are brought to her. This is in addition to her apple juice, milk, and coffee, which you just know is not nearly as tasty as her typical skinny vanilla latte.
2. All 7 pills this morning went down without enormous effort. That's a significant feat considering it's hard to swallow anything, especially something that looks suspiciously like a fat jelly-filled pencil eraser. Today, vanilla pudding eased the way. Another trick that worked.
3. Nurses know exactly how to get Mom into a normal chair and back into her fancy bed with a minimum of effort on mom's part. It's quite a feat of physics to do that, given no motor skills are working on Mom's right side. (Let's get on with the radiation, people!)
4. Nurse Michael is very good at taking blood pressure and putting on leg compression wraps without waking up Mom. He's so quiet, you wouldn't even know he's in the room. Mom's quiet sleep ended when the compression wraps started inflating and deflating, but the good thing is no blood clots will form while she's wearing them.
5. Brushing teeth is a fun experience when half your mouth isn't working the way it should. It's a team effort requiring a table, a small cup of water for rinsing, a big empty cup for spitting, a supersoft toothbrush and a little dot of toothpaste, a floss pick, and a small cup of mouthwash. Not to mention a towel and paper towels. After doing this a few times now, you'd think I would have figured out to prep all my supplies before getting started. But I always leave something out of reach.

I know Mom is ready to brush her own teeth again. Let's GO with this radiation so she can!

Counting the hours until 2:30 pm...

Hazy, lazy Sunday

The wisest are the most annoyed at the loss of time. ― Dante Alighieri

It was a quiet Sunday at Harris Methodist HEB. Mom had one radiation treatment on Friday, and we were all nervous but happy that she was beginning treatment aimed at kicking back this awful disease. But the hospital runs with fewer staff on the weekends and, since they want everyone around during radiation in case a patient has a serious adverse reaction, no radiation was scheduled for Saturday or Sunday even though the oncologist felt Mom was sick enough to warrant starting radiation weeks earlier than they would otherwise. (Normally they would wait until her head had healed from the surgery, since radiation can slow the healing process.)

The wait is frustrating for Mom, and it strikes us as odd that a hospital would have fewer staff on the weekends. There aren't fewer sick patients, are there? Not judging by the waiting room anyway.

So yesterday and today, poor Mom had to just sit and wait for Monday, so she could resume forward progress and feel like she was doing something about this thing. Sitting and waiting does not come naturally to our Mom - not unless she's sitting on a patio in sunny Napa Valley and waiting for someone to pop open a bottle of Syrah. Instead, she's reclining in a bed that inflates and deflates every few seconds, facing the same view she's seen for days, too tired to enjoy any of the diversions we try to bring into the room. (Syrah not included, sadly.)

Many of her medicines (steroids and Temodar, in particular) have the side effects of heightening emotions and causing insomnia. She's more emotional than last week, and no one sleeps well in the ICU. The only thing that seems to help is surrounding her with family, hugs, and assurances that we all know she's strong and can fight this thing.

Today I reminded her:

"If you can teach a bunch of rowdy eighth graders, you can do this. If you can inspire a kid facing so many challenges to rise above and see his own potential, you can beat this thing. It just will take time."

She sighed, nodded and seemed a little calmer. As one of her nurses said, it's okay to be sad, but she also needs to get a little mad and determined to push as hard as she can and get back what this stupid cancer has taken away from her. She can do it.

Kindred souls

Beverly, Lisa, Robin and Barbara

Nancy and Alicia

The Worrell-Berg-Mack-Probasco clans were camped out in the waiting area as usual today, and our spirits were bolstered by visits and treats from many of our wonderful friends.

• Ed and Arden Mack, Peter's parents, came by and brought us all bracelets that say "God is big enough." Mom loves hers (and stole it off Jennifer's wrist to put on her own.)
• Randy McLaughlin, Mom and Dad's good friend and long-time wine expert, and his wife
• The NRMS crew: Barbara Hargrove, Nancy Kirkland, Beverly Barfield, Lisa Edmonds, and Robin Thomas, who brought us girls a spa basket of treats so we can continue to make Mom's stay in the ICU as spa-like as possible (and maybe ours too!)
• The wonderful Sharma family - friends of Mom and Dad's for more than 20 years - brought a delicious and nourishing dinner.

Thanks so much for your continued prayers and support! It's truly humbling to know we have such a loving community here to help us and Mom get through these awful times and reach for better days ahead.