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.

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.