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.