Humor above Stress

It's easy to walk into Mom and Dad's house with a smile and a spring in my step because I know my family and I are so lucky to live about 100 steps from door to door from them. Maybe not even that far. We have lots of fun stories to share from the girls' first few days at school, soccer practices, band practice, last minute school physicals, typical work day humor.

It's hard to leave Mom and Dad's house, even with a plodding step, because I want so badly to help ease the emotional stress, trying to maintain a balance of cheerful chatter, looking for a receptive, understanding, or encouraging expression, knowing when to shut up, knowing what will work best for dinner...wondering if there's room in the closet for the nonstop pile of laundry...that's part of the hard part. I always feel like I didn't do enough, and all the guilt of balancing the 2 houses on opposite sides of the street is sometimes almost crushing. 

But, in between, I get to see little joys, like this:

Yesterday, I was helping Dad lift mom up onto her wedge pillow so she could see the TV better. She didn't understand what we were doing, and I was telling some story about who knows what...I'm sure I was talking too fast as usual.  Mom got very irritated and said "What are you doing?", which caught me off guard so I stopped my story and told her we were just going to move her up in bed. She was frustrated with me, and likely with just being stuck in bed anyway, but particularly at my noisiness.  Then, Dad said he was moving her so he could kiss her easily, which she immediately softened towards.  And she replied, clear as day, "Well okay, but you know that has absolutely nothing to do with it!" 

How does someone with a brain tumor, who can barely verbally communicate, make me and Dad laugh, and release the tension just at the right time?  We are thankful for moments like that, they are rare but cherished.

Back to the comfort of home

Mom was discharged from the hospital yesterday with another long list of prescriptions and instructions, and with news about her tumor. She had an MRI Monday evening which has shown the tumor has grown and passed the brain's midline, and the tumor has bleeding inside it.

Due to the bleeding, mom doesn't qualify for Avastin, one of the 2 available treatments, as it would cause more bleeding.  Due to her delicate condition, overall weakness and recurrent infections, she doesn't currently qualify for chemotherapy either, and that's the only other treatment for glioblastoma that exists.

Even if she did qualify, neither of these options will make the tumor go away, and both of these options would trigger significant side effects which would lessen Mom's quality of life.  That's the bad news.

What do we do now?  We can work on Mom's current quality of life, do our best to eliminate the infection, and help her build strength. If she regains strength and overall "health" then the 2 treatment options will be available.  That's the good news.

At home, we are trying to find smiles in little things:  mom's instinctive ability to twirl spaghetti noodles with a fork, her hands unbruised thanks to the talent of an excellent IV nurse, her laughter at my error throwing out 2 perfectly good bottles of coffee creamer. Mom is enjoying Dad's bacon for breakfast, it's so much better than hospital bacon.  We've been home not even 18 hours and already we've had 2 nurses visit, and mom's caretaker showed up right on time this morning.

Not knowing what will happen is terribly stressful, I can't deny that, but knowing that Mom and Dad can be together in their home surrounded by helpful caregivers and family is comforting.

Thanks to everyone for your positive thoughts and prayers.

Hospital update

Mom was admitted last Thursday again to the hospital, and after an entire afternoon/evening in the ER, was wheeled up to her room by none other than the head of the department...who has by now gotten to know Mom and Dad pretty well. 

Mom had the normal bloodwork done, and a CT scan.  Bloodwork showed an infection which she's taking an antibiotic to fight.  The CT scan shows changes. The tumor, or the swelling caused by the tumor, or maybe both, has crossed the midline of her brain, which is a turn for the worse.  The tumor that started on the upper left center, now has spread. 

At this point, treatment options are incredibly limited, and the best treatment we can give is probably having a warm Starbucks skinny vanilla latte at hand in the morning, a chilled red raspberry flavored sparkling water throughout the afternoon, and plenty of kleenex at mom's left hand to cover her fairly constant coughing.  She likes holding onto her kleenex.

We are waiting today to see mom's neurooncologist, who hopefully has a great medical plan for treatment, but realistically we know that is unlikely.  We expect to learn about plans to go home instead.

Please no calls at this time, we'll update the blog when we have more information.  Email is good but forgive tardy replies please.  Thanks.

 

A song for Mom

There's a song in my heart for Mom today. It's been a rough few weeks at home. Here's hoping and praying that this sunny Monday will bring the start of a new week and new energy for Mom and Dad.

Everything went wrong,
And the whole day long
I’d feel so blue.
For the longest while
I’d forget to smile,
Then I met you.
Now that my blue days have passed,
Now that I’ve found you at last -

I’ll be loving you always
With a love that’s true always.
When the things you’ve planned
Need a helping hand,
I will understand always.
Always.

Days may not be fair always,
That’s when I’ll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

I’ll be loving you, oh always
With a love that’s true always.
When the things you’ve planned
Need a helping hand,
I will understand always.
Always.

Days may not be fair always,
That’s when I’ll be there always.
Not for just an hour,
Not for just a day,
Not for just a year,
But always.

Not for just an hour,
Not for just a day,
Not for just a year,
But always.

(Always, by Irving Berlin)

HGTV, birds, and fish

With cable tv installed in mom's room, she's been doing a lot of shopping...house shopping...redecorating, etc.  It's a great diversion and since she's not yet able to get into her wheelchair, we're all enjoying the Property Brothers, Love it or List it, and the day-long shows about the most unique homes, pools, kitchens, whatever, in the world.  She loves it!

The birds have returned to the bird feeder - after about a month hiatus, the blue jay, the cardinals, and the little finches are going through 2-3 refills a week. This bring Mom great joy that her friends have returned.  Who knows where they have been, we are sure glad they are back this weekend.

We have discovered a new little take out place that's good for a hot dinner. The little Taco Bell-turned Italian-turned German restaurant close by is now a seafood restaurant...which I was very suspicious about at first. Nothing survives in that former Taco Bell shell of a building.  But...this place is great!  Very fresh fish and shrimp, onion-free hush puppies, which we've never found outside North Carolina.  They do run out of things, today they ran out of chicken for a sandwich, last time they ran out of metal utensils and macaroni and cheese, but they have plenty of energy and big smiles when complimented on their food.  I hope everyone pays a visit to O'Frills Restaurant.  (not a fancy place or a fancy website, but good food.)

Mom is still battling an infection, which is so frustrating to her, preventing her from making progress in therapy because her energy is just zapped. It seems this infection has been continuing since early May. It affects her quality of life much more than her tumor and its swelling does.  The last doctor's appointment confirmed there has been some minimal grown in the tumor, and associated swelling with it. Neither of these, though, are to blame as much as the ever-present infection.

Mom has had several special visitors this past month, family and friends from around the country whose paths have brought them through or to the DFW area. These visits are so important to both Mom and Dad.  If you are around and have a few minutes to visit, it is energizing to everyone.  Mom's speech is sometimes pretty difficult but she understands what she hears perfectly - she just can't always communicate back with ease.  Her illness hasn't hurt her friendliness, warmth and concern for others, though. She loves her family and friends.