Taking the next first step

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

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

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

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

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

It's a good day

Things for which we're thankful today:

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

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

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

View from Mom's room

Post-ICU Life

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

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

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

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

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

Dad enjoying USAF reunion, February 2011

Mom telling a funny story at USAF reunion, February 2011

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

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

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

Still in ICU

Mom and Jennifer

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

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

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

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

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

Mrs. Muleshoe

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

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

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

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

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

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

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

Fast forward to the mall at Lubbock.

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

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

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

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

Me "Orange Julius"

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

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

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

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

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

Back in the ICU

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

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

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

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

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

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

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

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

A way to help

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

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

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

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

Thank you for your help and prayers.

Lists on an less than fun day

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

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

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

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

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

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

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

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

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

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

1.  Tell her stories about her grandchildren.

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

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

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

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

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

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

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

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

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

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

A Welcome Respite

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

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

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

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

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

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

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

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

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

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

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

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

Jennifer enjoying the new suite.

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

Our new kitchenette.