Taking the next first step

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

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

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

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

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

Advent Season!

Several days into this hospital stay, Mom is feeling somewhat better, but still has obstacles to overcome.  She was diagnosed with an infection and treated with a trio of antibiotics, which over the past few days have done a good job of restoring her hand movement.  We're still waiting for good progress with physical therapy, however, and her speech comes and goes, but one hurdle at a time. 

The steroid she's been taking since February has made her skin terribly thin and prone to easily tear.  I learned my lesson a few weeks ago when sliding a pillow under her arm, my ring caught the a small fold of skin around her elbow and ripped it right off. Just a little tear, but it wasted no time bleeding and then my attempt at a soft band-aid with gauze and paper tape caused further damage. She didn't even flinch when it happened, but we were both sad and the bruise which will take weeks to heal is shaped like a circle from the tape, with a little interior frown from the ring.  :(

We are enjoying the season, despite the bruises and tears.  Today at Starbucks I picked up a coffee and chocolate lover's Advent Calendar, and got a free skinny vanilla latte with purchase.   Before she opened it, she said "25!" and why would she say that without reading the label or me telling her what it was? It doesn't even look like the little Advent calendars she has given the girls in years past, the big flat ones with chocolate molded toys in each paper compartment. I was surprised she figured out what it was just by seeing a few numbers on a box.  This big Advent box is super cute, and the little doors give Mom something to look forward to each day, not to mention providing a challenge of how to open the tiny cardboard door each day. 

During lunch today we caught the end of a new(ish) version of Miracle on 34th Street, with an ending neither of us were familiar with.  She very clearly said, "I don't remember this part?!" and neither did I.  I think it's fascinating that she can remember what she doesn't remember, even though it's been at least a year since she's seen any version of that movie. 

We're happy to be at St. Paul for now, but are all looking forward to getting over to Zale Lipshy for some seriously good inpatient physical therapy.  We are hopeful that transition will take place in a few days, when this infection is cleared up, and some overall strength returns. 

Back in the Hospital

After celebrating and enjoying a traditional Thanksgiving meal from the comfort (?) of her bed last week, Mom and Dad have reached the end of the line on patience with Mom's back issues.  For the past 2 months Mom has pretty much been confined to bed because her back has been very difficult to work with.  It could be pain from just laying in bed, it could be due to long-term steroid use, it could be a new compression fracture, we're not sure.  Speech and right hand motor control have also been more troublesome lately and we are unsure why.

But we are sure of one thing; we are tired of waiting so back in the hospital we are today, with a bevy of tests being run, currently in a 3-hour MRI session of brain and spine.

Thankful today for anti-anxiety medication for Mom, Subway sandwich shops for Mom and Dad, kind nurses, and dad's cell phone charger.  And especially thankful for prayers from family and friends.

I'll post more when we know what's up. 

TGIF!

Quick update:

Mom's nurse came in for a normal visit today, and she removed Mom's wound vac completely!  She said the wound has healed wonderfully, making a lot of progress in the last week particularly. She has been saying for the past few months that it would be a very slow process to get to a certain point, and then when it really started to heal, it would be quick.

So quick it was, and today was the day. It's been a very long road to this point, but now she is free of the tether to the wound vac, and its ever-present whir.

YEAH MOM! Champagne and pizza to celebrate tonight.  

Braiding

I googled it:  Braiding is a method of intertwining three or more strands of flexible material.  

We are nothing if not flexible these days, between visiting with 3 granddaughters and their overlapping activities, 3 full time jobs for the working adults, 25+ beckoning boxes in the living room, laundry for 7 waiting to be done, 2 refrigerators waiting to be refilled and Halloween costumes and candy to be bought.  Flexible, intertwined, and more than occasionally exhausted.  

We have a routine. Mom has many people in and out of the house every day; nurses and therapists, and caretaker Cindy is working well with Mom, helping her relax before and after the visits and hard work of in-bed rehab.  Dad is ever-present, working on his laptop whenever he's not attending to Mom or being mindful of all the people who are here to help.  The juggling act of schedules and the accommodating last minutes changes requires unending patience and flexibility.  

Mom's favorite nurse came in this morning and Dad met her at the door with a cup of coffee just the way she likes it, in her favorite cup. The nurse climbed onto the empty side of Mom's bed to dress her wound, explaining that she doesn't do this for everyone, but Mom is special. It was a comfortable visit and Mom's wound is looking better.  Several weeks left, probably, of the wound vac she's hooked up to, and that will be a sparkling wine day, the day it comes up and is shipped back to the company it came from.  Packed in one of the (seeming) dozen of brown shipping boxes stacked in the bathroom.  

Weekends are different. A weekend means (with few nurse exceptions) no one is officially coming over, so Mom can enjoy a lazy breakfast and a day of tv, maybe some homework, maybe some reading/listening to the newspaper being read.  Probably a lot of football.  Doesn't matter who is playing.  Cowboys are always good for some heart pounding and adrenalin pumping.  We think it would be easier to be a Giants fan sometimes.  

We had Saturday and Sunday breakfast together. Mom gave instructions how to wash the many, many small rugs around the house.  (Thankful for a sunny day for drying outside!)  

Mom dried many dishes. It's amazing how many dishes you dirty up, between the Tervis tumblers, and all the silverware.  She loves drying dishes and it's super helpful  - it saves so much time, and helps the kitchen look nice and clean.  We also folded lots of laundry. Mom does a great job on washcloths and hand towels, folding them as evenly as she ever did before she was sick.  This is the best kind of occupational therapy she can do, practical, satisfying, and something to be proud of.  

Mom sat up for 26 minutes today on the side off the bed, longer than she has since mid-September.  When she was up, she enjoyed a heatpack and a nice back massage.  No pain!  She tried on a pretty new red merino wool sweater Dad picked up for her while he was shopping.  She loved it.  She was again proud of her work and efforts, and even after laying back down, continued to do stretches and exercises that her physical therapist has taught her.  She and Dad both felt great.

After a yummy dinner of grilled pork and sides, Mom was watching the World Series with freshly-showered Mary Claire right beside her. Before Mom was sick, she used to love to dry the girls' hair, she would comb and blow dry until it was perfectly done and just soft as it could be.  Mary Claire brought her a comb, and Mom enjoyed combing out the long damp loose curls.  And then she did something amazing. She braided her hair!  Now that's some good occupational therapy! 

Time flies

We're still here! Sorry for the long delay between posts. Between caregiving and working and taking care of our various family responsibilities, we've fallen behind in our updates. I apologize, and I know some of you were wondering what's going on.

Things are going pretty well. Mom is still recuperating from her back and hip injuries, and she's able to sit on the side of the bed a little more each day. We had a ball watching old TV series yesterday -- Father Knows Best and Dennis the Menace had us in stitches. We were laughing so hard, Daddy came back to see what on earth had us in such fits. Last night, we watched the debates, and Mom and I thought for sure either President Obama or Romney were going to throw a punch. We were backtalking to the TV quite a bit.

We discovered something mundane but important yesterday. Turns out there isn't a single set of queen-size percale sheets in this house. Everything is sateen. Percale is much cooler than sateen, and since it's still in the upper 80s here in North Texas, the coolness would be welcome. Mom and I both prefer percale, and since she's in bed 24/7 for now, why shouldn't she have what she wants?  Luckily, I know where to get fantastic, crisp percale sheets. (You knew I was good for something, right?) Good ones are hard to find these days.

Speaking of good, I'd like to brag about our neighbors. They are tremendously thoughtful and caring; we're talking good old-fashioned neighborly neighbors. Frank and Joanne from across the street bring over dinners and flowers and cheerfulness. April from next door brings over dinners and magazines and is equally cheerful and upbeat. It gives Mom such a boost; her spirits are lifted for hours afterward. It's so nice to have old friends as neighbors, and vice versa. Everyone should be so lucky. Thank you all.

Old friends are the best, aren't they? Yesterday, a postcard arrived from Cape Town, South Africa. My dear friend Glenn, who is also one of Mom's former students from Clovis High School, sent her a note from afar, telling us about his experiences and giving us something grand that we could dream about, a little mental adventure of our own. It was a real treat to get a card from nearly 9,000 miles away. Thank you, Glenn! You totally made our day.

Speaking of Clovis, I recently learned that a teacher there (from Yucca Junior High, where I spent my 9th-grade year) is fighting glioblastoma multiforme. Sigh. He received the diagnosis a few months after Mom did, and he's facing challenges similar to the ones Mom has been through. Chuck Tipton and family, we are praying for you.

Labor Day Weekend Update

Motivated by the several friends this morning who asked about Mom, here's an update for everyone.

It's hard to say, really. She's at home, first of all. She's been in and out of the Emergency Room a few times the last 2 weeks, suffering from a muscle injury behind her right hip, and a few days later severe pain from the same spot.  Early last week she had a bout with sudden dizziness which caused her to temporarily lose vision, and there was some swelling around her incision site.  

The good news is that through all those ER visits, Mom came home after every one. More good news is that the dizziness/swelling visit required an MRI, which indicated that her tumor has not grown, and so the dizziness and swelling were not tumor related.

The bad news is that Mom is really restricted to her bed. The hip pain makes it impossible to sit up in a hip-weight bearing position.  The dizziness makes it hard to sit up, period.  When we went to a regularly-scheduled checkup on Wednesday, Mom took some heavy duty pain killers and bravely managed through 5 hours in a wheelchair...which she has paid for the last 3 days not moving from the bed. 

So she's rather bored.  We watch a lot of TV together, whatever we can find on the channels available on the (very cool) antennae that Dad hooked up.  We take naps. We fold laundry, I do the big towels and shirts, she does everything hand towel size and smaller.  We do the dishes, I wash and take her a container full of wet utensils, she dries them.  We act out plays that Mary Claire writes, we read Mom her lines, she repeats them.  We watch more TV. 

We did have one breakthrough fun moment last week, when Mom and Mary Claire helped make a quiche from the bed.  MC shredded an entire block of Swiss cheese, Mom tore up a whole bag of spinach. The sheets got spinach-green dots on them, which months ago would have been not allowed, but we don't have the same rules anymore.  Mom unrolled a refrigerated pie crust over a deep dish pie plate.  I filled it with said cheese and spinach, and added bacon, eggs and heavy cream (I love Paula Deen!) and about an hour later we had 2 delicious, nutritious, pies. We ate them for breakfast, lunch, and dinner. Yum and very fun for Mom and Mary Claire to do.  

We are figuring out how to take our normal every day activities and adjust.  What tasks can we do laying flat out on a bed?  It's making my brain think in different ways, rather than doing it myself and tasking my girls to do some things, I'm figuring out what we can move over to the middle bedroom.  I do worry that I'm oversimplifying what Mom can do.  Or that I'm not letting her be in control of decisions she is perfectly able to make.  It's a hard situation, actually.  

To sum it up, when you ask how Mom's doing, she is doing fine, sorta.  I guess we all are.  

Mom's addition:  We are trying the very best we can. Might not be the way some people do it, but...

The Artwork

One of Mom's friends called me a few weeks ago with the most amazing story. I am never yet am continuously surprised by the breadth and depth of Mom's touch to so many people. This one was something we just never expected.

Mom has taught all kinds of students throughout her career. She taught children who have grown up to live wonderfully productive lives as teachers, photographers, airline dispatchers, even an NBA player and now college basketball coach, and so many other careers. She taught Gifted and Talented students, Advanced Placement, Honors, Remedial, Home-Based, English as a Second Language, adults, preteens, teenagers.  Through all these groups there are always the smart students, the truly gifted, some that work hard, and some that don't care. Some students have grown up in circumstances that would scare most of us. As children, they've faced situations that we, as adults, will never be able to fully comprehend.  

This story is about one of those students.  

It must have been about 2003 or 2004 when Mom had Russell in her classroom, probably as a 7th or 8th grader at North Richland Middle School.  He was not an easy kid - he had a hard life, mom was a drug addict and dad was in and out of prison.  He ran the streets, he hung with the wrong crowd.  He was in and out of detention and juvenile facilities.  And then when Russell was 15 years old, he and several of his friends were together, doing nothing good, when he shot and killed a 19 year old man outside of Hurst Junior High in February 2008. Russell is currently serving a 24 year sentence for capital murder in a Texas prison.

I suppose it is possible over the course of a long career, but I don't think Mom had ever taught a murderer before. Not knowing the whole story, just being aware of the horror of a vicious crime so close to home, I remember one night at dinner several years ago being stunned when Mom talking about how one of her former students was accused of committing murder.  A student who had been in her classroom, who she had graded papers for and talked personally with, who she had made a connection with and saw a light in his eyes.  She and her fellow teachers Beverly Barfield and Lisa Edmunds understood Russell had it hard at home, and they tried to make a difference for him at school.  I remember Mom being so very sad that night at dinner, commenting how Russell just never had a chance, he was born into a situation that there was just no getting out of.  

I've thought of that part of Russell's story many times. How can a kid from a relatively "safe" (I thought) part of town grow up to be a murderer?  Why did he do it?  Did he think about it before? Did he think about it at school? In my mom's classroom?!  These horrible questions have gone through my mind and I'm quick to think maybe, yes, probably, who knows? Who knows what is in the mind of a student who has no secure family life, no stability, no trusted adult figure to model except for a handful of teachers he gets to see for maybe an hour each day for a few months out of his deeply troubled life.  I'm forever grateful no violence took place in the school, but I do think..it really could have.  

Fast forward to August 4th, when I received a voicemail from Beverly saying she and Lisa had something to share with mom.  The "something" is from Russell, it's a gift for Mom. 

I just cannot believe that Russell, after all these years, is still a part of Mom's life. Through the grace and faith of Beverly and Lisa, who have been the only 2 visitors Russell has received in prison since he turned 16, Russell has something to live for, has emotions to share and be shared with, can safely show caring for someone else.  He has commented that no one came and visited him, they "gave up" on him in prison after he got into even more trouble behind bars.  But Lisa and Beverly coming back into his life through letters and through visits, have opened Russell back into the world.  He has the will and encouragement to get out of the lowest level of the prison because he knows someone outside cares for him. Maybe for the first time in his life, people are showing Russell love, and maybe because there is nothing else he can do, he's taking the time to feel and express it himself.  

Lisa and Beverly reached out to Russell after many years, and while it's really better to read in Lisa's blog the whole story, the short part of it here is that they have told him about Mom's illness, and Russell expressed how sorry he is for how he acted in class, and how much he hopes Mom will recover.  He asks about her at every visit, and he wanted to give her a gift, and so he created a piece of art for Mom.

It's a handkerchief with beautifully drawn hearts, a cross, and clouds, and it has graceful script written on it: "Get Well Soon." Russell truly has a gift with the pencil, maybe in earlier years he was a graffiti artist...I can't help but think that. When he is allowed to have a job maybe he could be a calligraphist, he's really that good.  

After 18 months (or so) months of good behavior, he now has a roommate now for the first time.  The roommate can't read. So guess what Russell is doing?  He's continuing to learn from his North Richland Middle School teachers, who continue to teach him even now that he's 20 years old.  He is teaching his roommate....how to read.  

If you're interested in Lisa and Beverly's journey with Russell, please visit Lisa's blog. She has given me permission to share it here.  http://edmundsensemble.blogspot.com/2011/09/seven-years-ago.html

A Good Offensive Line

Only one day gone from 2012 Summer Olympics, and we're already into football season in Dallas?  What a great surprise tonight!  Taking a break from Bob Costas and taking a look at America's Team was fun for Mom, and for all of us, tonight.

We do love our Dallas Cowboys, even when there's not a lot to love.  But we have a whole new level of enjoyment now, watching the Cowboys through Mom's eyes and ears. Listen to some of her commentary on the plays, the players, and the news breaks between plays:

"Score at halftime, this is not a good game. Zero, Zilch, Nothing."

"Chad Ocho Cinco? What a mistake he made.  He is not smart. And I wonder if he can spell his last name?"

"Who is the quarterback?  That's not Tony Romo, that's somebody else now."

Mom "Who are they playing?  Oakland?" 

Alicia and Scott "No one likes Oakland except for Charles, and Macklin has a Raiders' shirt."

Mom "Oh."  (I think she was trying to not play favorite teams here, but we are talking about America's Team vs. the raiders. Macklin will continue to get Cowboys shirts for Christmas from his Aunt Alicia and Uncle Scott.)

"Are they kicking it again?" (yes, a lot)

"He didn't get very far that time. I don't think he did last time, either."

Mom "There sure are a lot of people at that game."  

Scott "The stands are never full for the baseball games!"

"Tony Romo still is not getting any blocking. I hope in the real season he gets blockers."

I think Mom likes Tony Romo.  She's not alone in that. :)  

She thinks he needs a good offensive line, protecting him from the Men in Black from Oakland.  She's got her own good offensive line of pill bottles lined up on the kitchen counter, and family circling her at every angle keeping the bad stuff away and only the good stuff gets through.

Some of the good stuff tonight included a delicious poppyseed chicken casserole and some of the best grapes ever - thanks!!

Just when you thought you had it figured out...

...you get another new loop thrown at you!  Monday a week ago, Mom slightly injured her back and now has a compression fracture to deal with.  You might think there is nothing good happening with Mom, ever.  You would be wrong.

Here are some of the wonderful things that have happened, even through the most recent difficulties:

1.  Mom's favorite nurse moved to a new care group, so we got a new nurse.  Not fun.  New nurse lasted exactly one hour, then we got a "new" new nurse who is delightful!  Someone who listens, who takes care not to pull of tape too fast, and someone who uses lidocaine liberally is welcome in our house.

2.  Mom has had several absolutely delicious dinners, all thanks to her friends.  Bless all of you for your time in the kitchen and making deliveries for her.  She and Dad have enjoyed every-single-last-bite of your deliciousness.  Special thanks for all the protein-rich meals, they are so healthy for her!

3.  Mom has decided to redecorate the middle bedroom she's spending all her time in while her back heals. The 25+ year old curtains are in the back of my car ready for the donation bin. In perfect condition, albeit a bit dusty. We have also removed an old computer monitor and Christmas-themed table runner.  (!)  Several dolls have also been relocated into the front room for the girls to play with.

4. Costco sells a wonderful TV antenna for less than $40.00 which means Mom has full Olympic access via NBC!  She has watched all the events on for the past several days, and has plenty to say about the less-than-complimentary announcers!  (She is not alone in this...)  She's cheering the Americans every night, and her favorites seem to be the littlest ones, I think they probably remind of her of her some of her students.

5.  Dad has hired a caregiver to help Mom during the day. This lady is a angel sent from above, I really mean it. She has connected with Mom and has been an invaluable help this past week.  She is, by trade, a massage therapist, and she's been working on Mom's legs the past week.  100% of the swelling is gone, just like that.

6.  At the last doctor's appointment we went to, Mom's steriods were reduced.  This seems to have had a contributing effect to the swelling reduction, too.  All good.  We were told to watch for signs of brain swelling, most noticeably would be a speech change, but we have not seen anything to indicate a regression. YEAH!

There continues to be much to be thankful for in the Worrell house, many good things happening, indeed.

Progress!

Some days are just so much better than others -- today was one of those days.  Mom had a follow-up visit with her neuro-oncologist.  What huge strides she has made in the last month!

She passed all her doctor's tests with flying colors, and both doctors she met with confirmed that, despite the temporary halt of chemo, she has made great progress with her tumor.  She is stronger physically, and her speech has tremendously improved.  She is starting to make unconscious movements which those of us without brain tumors do without even thinking, like when getting up from a chair, moving her feet a little backwards to get the momentum up.  That is a skill we have been reminder her of every single time she stands up, and Dad noticed yesterday she was moving them back without the reminder.  That's great progress!

Dr. Maher said something that made Mom very, very happy. She said something like whatever you are doing that is great is not a fluke. It's because your brain has healed enough to let you do that. So when Mom naturally lifts her leg up to put her foot in the wheelchair footrest, that's her brain working!  When Dad has to lift her foot to get it up there, it's not her brain "not" working, because she already proved it does. It just means she's fatigued and she needs to rest, take a breath, and try again.  She can do it.

Interesting thing about the brain. Dr. Battiste compared the brain to a muscle.  When it's fatigued, i.e. under any sort of stress or anxiety, it doesn't work as well. So if Mom says "I can't find my legs" it means really, she can't feel them, because her brain is too tired to let that pathway through.  She knows her legs are there, and she can see them, but she can't feel them, literally. But a few minutes of rest, deep breaths, get the stress under control, and the feeling will come back. Just like a muscle that works better after it's allowed to rest.

Other interesting facts from today's:

• Mom can reduce her steroids!  We'll be watching carefully for new symptoms that may come from swelling, but we expect this will be a good reduction in medicine. This will cause her swelling to go down, blood sugar to naturally regulate, and her wound to heal more quickly.  It will allow her skin to heal faster and not be so paper thin.
• Mom had her picc-line removed today!  This was put in while she was at St. Paul's, and it was intended for easy IV medicine administration and blood draws.  It was very helpful there, but not so much now, since she's not on any IV medicines. So the nurses did one last draw from it today for lab work, and then removed it! YEAH! No more daily flushing of the lines, no more having to cover it for showers, and no more having dangling tubes from under her right arm.  Super happy about this!
• Mom had her first restaurant meal since before February 10, 2012.  After her appointment, with plenty of energy from such a good visit, we went to Cafe Istanbul for a wonderful Turkish lunch.   The restaurant was empty, it was an odd time of day for lunch, but the waitress was typically wonderful, the manager sat and visited with us, and we all enjoyed some true down time and talked about Mom and Dad's adventures in Turkey.  It was lovely and we will go back on August 29th, after Mom's next doctor's visit.

Many thanks to all of you who have joined the Meal Train to help Mom and Dad with dinners.  You are such a blessing to us, thank you for your friendship and for the healthy and delicious meals you're bringing over.  

Learning a New "Normal"

Home sweet home!  Mom's been back home a week now, and like every other major venue change during her illness, this one has brought more unique challenges.  We're all so happy she is home, but we have quickly figured out that life isn't going to be what it was before, or even close to that, anytime soon.  We're learning what this new "normal" is supposed to be.

With mom's chest wound still significantly far from healed, there is a home health care nurse that comes daily to change the dressing.  The nurse is a good fit for Mom and Dad, she is a cancer survivor herself, and her husband was her primary caregiver for several months during trying chemo sessions.  She is careful to use plenty of lidocaine before touching the wound, and she provides good assurance and a good example that this is just a step in the healing process.  

We've learned that wine after chemotherapy tastes like salt.  How sad!  Mom has the green light to have a glass, but each different glass she tries doesn't go down like it should.  She truly enjoys her "Ice" drinks from Costco and a semi-iced glass of water.  Milk is also good. But wine, nope. Not yet.  We've said it's a good thing that Napa Valley offers delicious eating options in addition to the wineries.  When Mom and Dad get to go back there, they can eat and drink and both enjoy.  

Jennifer made some good Amazon purchases this week, one was a pretty bell that Mom can ring and summon someone for a drink or snack.  She also bought a room monitor that can alert anyone in the kitchen or den that our favorite patient has awoken from her nap, and it's time to get up and get moving!  These little items will make a big difference.  

Without therapists and 24x7 nurses and patient care techs to help Mom, Dad has been pulling round the clock shifts.  It continues to be an inspiration, to see the devotion he has to her, but it's also heartbreaking to see the toll the lack of sleep is having.  It's hard to always be the one who is "on" call.  It's time for more help.  On Sunday, we have a recommended aide scheduled to come meet our family, and Sara has feelers out to organizations we're learning about who we may be able to use.  We're all hopeful that someone will fit Mom's needs and be able to provide Dad some relief.  It's been a positive shift this week to get Mom and Dad to agree to calling for help. As people who have always been givers, switching to the receiver role is difficult. 

Along that line, tonight we re-opened the Meal Train for Mom and Dad. The meals our friends provided when Mom was first sick were so much appreciated.  Between working and being in the hospital, none of us had time to cook, and you kept us going.  Now that Mom and Dad are back home, and caring for her is a full time job, there's no time that Dad can safely leave to go shopping, Jennifer and Sara need to work, and I can't cook for 7 every night, especially when Mom and Dad need to eat at 530pm.  The early dinnertime is another new routine, important to keep because of sleep patterns and medicines.  

So, if you're inclined to help, the website is Meal Train and if you want, you can sign up for a day to bring dinner to 2 of our most favorite people.  No onions or peppers due to dietary restrictions, but just about anything else will be appreciated.  And will be served with a cold glass of milk for Mom and a coordinating glass of wine for Dad.

Thanks for your continued prayers for healing, especially for Mom's wound, and for Dad's stress levels. 

155 days later...

Today is Homecoming Day! Mom should be heading home in about an hour.

There are no words to describe how thankful we are for this day, and for the love, support, and many thousands of prayers from everyone. I'm tearing up just typing this out. Please know how much it means to us all.

The Art of Healing

Healing is a wonderful thing.

Healing means Mom has energy during the day, and then rests with that sigh-filled, "I worked hard today!" way in late afternoon and at night.  It means she participates in fun conversations as the result of great speech therapy (and let's not overlook a natural chattiness), and can now walk the entire nursing ward with her standup-and-lean walker.  It means there is more getting things right and feeling successful about herself.

Healing means becoming more mobile.  Today it meant she got her very own wheelchair, instead of a loaner from the hospital. The new wheelchair is everything you'd expect my Dad would order. Fancy removable big back wheels, flick and remove leg rests, one button touch slide out arm rests, a folding back.  Who even knew wheelchairs came with such add on features! It's new, with shiny parts covered in bubble wrap, and it's just super cool. 

Healing requires patience, and this is a hard test sometimes. Today brought wound-dressing change day. Ugh.  The wound on mom's upper left chest is healing, but it is a traumatically slow process, with daily or bi-daily dressing changes required, depending on the goop factor that day.  The medihoney that has been used has done a good job, but we're switching to a "salt impregnated microfine gauze" that will absorb goop and not add to drainage.  Seems logical.  What seems like a better idea is always using plenty of lidocaine to numb up the wound prior to repacking and covering it, and even best, having 2 Tylenol and a cold drink right afterwards.  The wound nurse does a very careful job, but Mom must feel the level of pain similar to having a wisdom tooth pulled with only light local anesthesia, from what her reaction is every time.  It's getting better, but this will be a long healing process.

Healing happens faster when you're comfortable.  One of the bright spots in Mom's day is her favorite tech Michelle.  Like I've posted before, there are some people who are just in the right job.  Michelle is one of them. She is very tall, strong, confident, unafraid to share her opinion, and she puts Mom right at ease. She can help Mom with anything, particularly transferring from bed to chair and back, with professionalism and a smile. Every single time. 

Healing means you start to enjoy normal activities, like cooking!  Today in occupational therapy, Mom made some fudge in a ziplock bag, by combining powdered sugar, cream cheese, peanut butter, hot cocoa mix, butter, and squeezing.  Out comes a soft and delicious Reeses-type fudge!  Yum and fun.  It's just great when she comes back from that session, proud to have done something productive! Nothing quite beats winning the painted pot in bingo, though. That was definitely a highlight!

Healing means everyone's emotions are back in check.  Sliding slowly back to acceptable stress levels, they can be quick to flare still, the bursts are coming less frequently, and there's more often a sense of calm (normality?) than not.  Or almost-a-calm.  Rather than worrying about the next beeping alarm in the ICU, or a change of the dreaded wound vac, or about not being able to remember grandkids' names, we are thinking of what to have for dinner, what shirts to buy at Target, and what card to pick out for a friend's daughter. We have all had our moments of gut wrenching fear but feel we're done with that.  It's better now.

Healing is helped by love. Dr. Oz said last night on NY Med (something in the content of) he won't operate on a patient unless they have someone to live for, someone they love, because the body heals best when love is present. Through Mom's family and friends, there is much love. Always evident, but never more so than the last 5 months and 1 day that she has been hospitalized, in rehab, or in a nursing care facility.   So many days away from home, from her friends, her flowers, her kitchen, her wine.... Your love has helped get her succesfully through this ordeal and Mom and all of us are grateful.

Healing is truly a wonderful thing.

A Good Week

Many things this week to be thankful for:

1. A room that overlooks the beautiful Dallas skyline, and the Fair Park fireworks on Wednesday night.
2. Strength to walk 200 feet in a walker, 10 times worth of progress in just a few days.
3. Good chai latte downstairs, easily reheat-able in 45 seconds to the perfect temperature.  
4. Delicious chicken strips for lunch.  
5. A therapist who understands that sometimes you don't have the energy to get up and do things, but one who will talk you into a 'happy place' and let you fall asleep.
6. Nurses and techs and therapists who know how to knock and walk softly.  (notice I don't include doctors here...)
7. Strong legs that stand with confidence more and more.
8. Strong arms that can move smoother every day.
9. Winning a pretty painted patriotic flower pot at a bingo game!  (Yeah for recreational therapy!) 
10. Lastly, greatly reduced overall swelling.  Shoes and socks fit almost perfectly again.

Happy Friday!

The Churchkey

Fun in speech therapy on Saturday.  The therapist came to mom's room with a big container of everyday items. The objective was to name the object the therapist pulled out of the box.

(showing a standard cafeteria-style teaspoon) Mom scoops and says "Spoon.'
(showing a green thick plastic plate) Mom says 'Paper, paper. Paper plate."
(salt shaker) Mom says "I think you have another one of those in there, and those are salt and pepper shakers!"
(hammer) Mom raises her right hand, waves it back and forth, and says "I want to build something so I need a hammer!"
(sock) Mom wrinkles her nose and says "i need a sock!" (it was clean)
(pen) Mom holds her right hand in the writing position and says "Pen!"
(paperclip) Mom puts her hands together and says "I will put some papers together!" which of course means paperclip to many of us, but to mom's teacher friends, will mean "this is what Judy had 5000 of in her room when we boxed her things up..."
(manual can opener) Mom says with all the confidence in the world, "That is a churchkey!" 

To which the therapist looks at me and says, "Wow, I just love when people say that!"


I had to look that one up.


Way to go mom, sometimes you surprise all of us.  Your brain is working just fine.   

Successes in Rehab

With several days of world-class rehab under her belt, Mom is showing real signs of progress this week. She's got 3 hours each day of rehab: physical, occupational, and speech. Today there was an extra treat, "recreational" therapy which involved a dog! She really enjoyed spending time with a silver-grey schnauzer. Mom said she was a "lazy kind of dog" and smiled when she talked about her.

Physical therapy, as of last Tuesday, was really draining, and Wednesday morning Mom said particularly that she was so tired, she didn't know if she was going to be able to do it. But Thursday night, she raved about how much fun it was, and (with some garbled words) seemed to be confirming that the therapist said she could do just what she could do, and the comfort level would come later. Reminds me of Dory in Nemo, just keep swimming, just keep swimming. No matter how hard it's been, Mom absolutely just keeps swimming. Sometimes against the current, this week it's with. :)

Dad told us tonight how Mom was able to use a very fancy walker, with a tabletop that her arms could rest on, and walked from the therapy room all the way to the elevators. That's about the distance from the door of any Starbucks to the "order here" area. But it's further than Mom's walked in a very long time. YEAH!

The nursing staff that I've seen work with Mom are wonderful. They occasionally aren't exactly prompt at coming to the room when buzzed, but they are always gentle and strong and helpful. The wound nurse that's caring for mom's mediport wound, still a deep sore on her chest, is a kind soul. She has introduced us to Medihoney, which seems to be working quite well. Mom's skin is thin and easily broken, but a drop of that honey with a small cover on it will heal it practically overnight. It's going to take a lot longer on the deep wound, but it's doing its job, and the honey/bandage treatment is not nearly as painful as the wound vac Mom had been wearing for the month prior to her arrival at Zale.

Mom's got 2 nice pictures hanging in her room, one of a ballerina that she and Mary Claire colored together over the weekend. The other is a letter transcribed by Sara, dictated by Macklin. He wanted to write it himself, and he did a great job! Mom loves reading it and enjoying all the stickers it's decorated with.

Grandma and Macklin, Christmas 2011

One thing we're all enjoying is the bevy of different restaurants in the Oak Lawn area of Dallas. One of our favorites, Eatzi's, is close enough to pick up a hot meal and eat it with mom in her room. Earlier this week, after listening to much good humored complaining about how they were hogging the whole thing, Mom and Dad shared a little of their perfectly delicate tiramisu with Jennifer and me. Tonight Catherine brought in some spaghetti with pink sauce, which tasted as if the tomatoes had been hand crushed just minutes before. We had also picked up a small creme brulee (Mom's favorite), a chocolate-chocolate cupcake, and big bag of red grapes (let's be a little healthy, at least). It was so fun to share the creme brulee, muting the TV showing Olympic swim trials, and being silent, concentrating on the lack of sound in the room, and taking the little plastic fork and just slightly crushing the crispy sugared top of the dessert. That sound is the sound of deliciousness. The creaminess underneath and the crunch of the sugar was a perfect 2-bite ending of a nice visit.

"Mmm, mm mm mm, Mmm!" Mom murmured with her eyes closed, enjoying everything about that bite of dessert. Yep, that about sums it up. About the creme brulee and about her progress. Wonderful.

Eatzi's - Sara loves it there so much, she took a photo.

It's a good day

Things for which we're thankful today:

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

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

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

View from Mom's room

Post-ICU Life

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

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

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

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

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

Dad enjoying USAF reunion, February 2011

Mom telling a funny story at USAF reunion, February 2011

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

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

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

Still in ICU

Mom and Jennifer

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

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

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

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

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

Mrs. Muleshoe

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

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

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

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

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

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

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

Fast forward to the mall at Lubbock.

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

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

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

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

Me "Orange Julius"

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

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

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

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

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

Back in the ICU

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

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

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

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

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

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

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

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

A way to help

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

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

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

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

Thank you for your help and prayers.

Lists on an less than fun day

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

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

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

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

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

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

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

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

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

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

1.  Tell her stories about her grandchildren.

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

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

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

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

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

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

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

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

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

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

A Welcome Respite

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

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

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

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

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

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

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

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

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

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

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

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

Jennifer enjoying the new suite.

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

Our new kitchenette.

A little smile

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

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

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

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

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

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

(Giggles ensue.)

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

(More giggles ensue.)

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

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

Day 115

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

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

Waiting on some good news.

Status on Day 115

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

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

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

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

Next steps

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

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

Blessings

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

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

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

Stumbling blocks and stepping stones

Mom and Sara, circa 1980-ish.

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

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

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

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

I guess that didn't work out as planned.

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

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

I guess none of this is working out as planned.

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

Chemo

...sucks.

It sucks the energy out, it sucks away your blood counts so your red blood cells and white cells drop, and you become anemic, and you have no energy to do anything but sleep and maybe eat a little of what your husband and daughter are offering you in the hopes that it transforms into something that will replace what's missing in your cells, boost your energy, sustain you while poison is coursing through your veins on its way to confusing the cells that are dividing unchecked, so that they do themselves in.

Thank you to the nurses who keep an eye on things, and to the doctor who himself seems uplifted, encouraged at her progress.

MRI brings good news

Just a quick update, and I apologize because I know it's been a while. The results of Mom's MRI yesterday came in, and the tumor has shrunk! Isn't that wonderful? Also, there were no new tumors, so maybe this toxic mix of Avastin and Temodar (chemotherapy) is doing good work up there! Thank you, everyone, for your continued prayers. It really does help.

Mom has been sleeping most of the day, though she did get out and about for a little while. The physical therapist at the hospital helped her stand for about 20 minutes with the support of a walker, and she and Daddy took a stroll/roll (he walked, she wheeled) around the hospital corridors. But chemo is well known for sapping your energy and making you feel bad in general, and it's not going easy on Mom. She's getting lots of rest and good nursing care here, though. And the food is better than it was at the rehab hospital. Speaking of which, can anyone recommend a good inpatient rehab facility? We need to find one, stat.

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.