Hallucinogenic Ravioli

Suzy said to me on my way back to Grand Rapids on Monday, "You've gotta hand it to Mom. She's tough." She has just recovered from her second UTI since her last hospital visit in May. Her hemoglobin has been 7.7 for the last two weeks. Her lungs sound clear, her pulse is 70, her oxygen is 97, and temp her normal 97.something. Our mom is a strong little fighter.

We began reading Leif Enger's Peace Like A River a couple weeks ago. We're currently on chapter four. The nine-year-old girl in the story is a fan of westerns who writes a poem about a showdown between Sundown and Valdez. Mom likes the poems. We're also reading a collection of love poems I had on my shelf. So far, her favorite is So Well I Love Thee by Michael Drayton. When I read it to her for the first time a couple weeks ago, we pause at the end of this stanza:

The corn, that in the ground is sown, first dies,
And of one seed do many ears arise;
Love, this world's corn, by dying multiplies.

Mom pointed and said to me, "That is so scriptural."


The number of profound and lucid moments are declining. Mom's personality is still all there, but her grip on reality is slowly slipping. The constant is her love for us and ours for her.

Mom has allowed the little ones to help care for her. For a long time she was resistant and would scold Olivia and Cameron for offering to help her with eating or holding one of her stuffed animals. But she is more comfortable with it now, and the kids can now forge their own special place in Grandma's life. Olivia lays her head on Grandma's chest every night before bedtime and Grandma kisses her head.

A few days ago Mom was eating ravioli for lunch and thought she saw people outside the door. I told her there was no one really there. Evan asked her if she wanted more ravioli. Mom replied, "No, it makes me see things."

More Rosisms over the last couple of weeks:

(Placed Olivia's lime green stuffed poodle on Mom's lap)
Mom: Oh. I forgot to name it.
Pat: What do you think would be a good name?
Mom (after long pause): Jewel...
Pat: Jewel?
Mom: Why, I was just thinking that!
Pat: Yes, you just said it out loud, and I repeated it.
Mom: You're a genious!

Mom: I have an idea...sweet pickles!
Pat: Sweet pickles for everyone!
Mom: For everyone...on me!

(During bath)
Pat: Does that feel better?
Mom: Yes, except for that man on the wall over there.
Pat: Oh, there's not really a man over there. The morphine is playing tricks with your eyes. It's just you and me.
Mom: And Satan.

I made potato soup for the family on Saturday, and Mom was so excited about it that she sang.
"Oooh, oooh, aay....
Oh...my...soup!"
I told Mom no one had ever sung for my soup before.

Last weekend I brought Mom one of those videos of a fire place so she could have something warm and soothing to watch as an alternative to the game show network and Animal Planet. She loved it. A couple times she was confused by it, but never scared.

(Calmly) "The neighbor's house is on fire."

"Don't fall in the fire. I'll have to do a mullikabump."

Mullikabump is one of several new words Mom has fashioned lately. Among the others:
Covortz
Retro-Rinse (Evan's definition: where the spin cycle of yesterday meets the technology of today)
Tom box
Davenportase

Mom brings a lot of joy to the Wise's house. Paul was in the hospital for four days last week, and Mom was so happy to see him come home. Most visits to Mom's room result in a resounding welcome and bright smile. I've never felt so welcome anywhere as I do when I walk in her door on Thursday nights. Sometimes she forgets I'm Patty, but she never forgets she loves me. That's everything.

Stop your applause. Really. I mean it!

As of Thursday, Mom's labs were typical. Her hemoglobin is 8.4 - low, but with the range she has maintained. Her magnesium was low so she is receiving supplements, but Suzy will try to get the magnesium added to her fluids to eliminate the need for another pill. She can still reach her face with her hands. In fact, I gave her carmel corn to eat with her fingers, and she was able to feed herself for the first time in months. Evan made her a grilled cheese sandwich yesterday cut in four pieces, and she ate it all with her own hands. She is very proud, and so are we!

Last weekend Mom was still very talkative. She is very observant of people who are with her and those who are not really there. She has tried to get out of bed many times, which is good exercise for her but not possible. She is constantly working on an imaginary something, like sewing, making supper for the family, eating a snack, working a puzzle. Sometimes these activities are frustrating to her, but most of the time she is content to be working.

On Tuesday night Mom became very frustrated and angry at Cameron for not doing something she thought he was supposed to do. Her anger deepened, even though she was gently told he hadn't done anything wrong. When she heard clapping on the television, she said, "He (Cameron) is conjuring this clapping to our demise." Although it was articulately funny, it was time for Cameron and Olivia to leave Grandma for a while. Olivia went back later to give her a good night hug and kiss, then again. The second visit, Grandma hugged and kissed back.

Mom has frequently forgotten that she is home. She often speaks as if she's at our house in Traverse City waiting for Dad to come home, or at her childhood home on eleventh street waiting for her brother Jack to play with her. It must be so difficult for her to constantly return from her memories to her bed at Suzy's. She has been almost always sweet and compliant during this illness. She's entitled to some expression of frustration and anger, in whatever form it finds its way out of her. We can certainly make room for it. Suzy will monitor her pain levels in case some of her frustration is related to physical pain.

I spoke with Mom last night before going to bed. She was her usually happy self, and our conversation was normal.

"Hi Mom!"


"Hi Patty! How's every little thing?"


"Fine. I miss you."


"I miss you too, Patty."


"I'm coming to see you on Friday, and I'm going to stay with you for three whole nights."


"Oh, that will be wonderful!"


"Good night Mom. I'll see you in my dreams."


"I'll see you in my dreams too. I love you Patty."


"I love you too, Mom."

Pictures from Sunday are below. I see now that they are posted that I really need to recharge my camera batteries. Sorry for the poor quality.

Lately

There have been changes in Mom over the last couple of weeks. She has quiet times, then chatty times. Moody times and stoic times. She's developed some new aches and pains. We've increased her medicine. Through all of it, she still has a kind word and a smile every morning.

The drugs that are keeping her comfortable are fentanyl and morphine. The fentanyl is administered through a small patch we place on her shoulder. It administers 72 hours of effective pain relief, then we change the patch. The morphine is in suspension and she gets a small dose every three hours throughout the day.

For her brain, we give her dexamethasone. This reduces swelling caused from the brain tumor. We're monitoring its effectiveness closely, since it is a steroid medication and can make her more suseptible to infection.

Corey and I are just about ready to head out the door for Boyne City. I'm posting a few pictures from the last couple of weeks, and I'll try to write more over the weekend.


Mom dreaming sweet dreams of puppies and chocolate.
Tina and Mom.
Tina and Suzy at the door of Mom's room.
Kisses for Tina.
Cameron and Devon.
Devon blows bye-bye kisses to Grandma Rose.



Bill, Pattie, Jessy & Tyler with Mom last weekend.


Tyler and Grandma Rose saying bye!

Babbette keeping Mom's lap warm, or Mom keeping Babbette warm...it's a mutual thing.

Nondescript

The last few days have brought more interesting conversation and memorable Rose-isms. Mom hasn't been this animated and happy in months.

During TV commercial-

Mom: I told her to call me Caroline (long "i" sound)

Evan: Why?

Mom: Because it's a nondescript name.

Another TV Commercial: Instead of eight Tylenol you can take two Aleve (paraphrased).

Mom: I took two Aleve.

Evan: Why?Mom: Because they, too, are nondescript.

Mom's potassium is a little low, so she gets a little more in her sodium chloride now. She's getting more pain killers, which are helping immensely with her movement. She has gradually done more and more with her arms, and Sunday she touched her face for the first time in many weeks. She no longer has to rely on us to scratch her nose for her.

Mom and I finished The Shack on Friday night. I asked her if she enjoyed the story, and she said she enjoyed it immensely. Next, we plan to read Strong Poison by Dorothy Sayers - a gripping mystery with a dashing leading man and an undeserving heroine. I have strong feelings on the subject.

Sunday evening Jaime read to Mom from The Oxford Book of English Verse. She was unimpressed with half of them, and one of those she liked was a sonnet by Sir Philip Sidney entitled Desire. She liked it so well she wanted to hear it read again, so we called in Evan. He recited it with a loud faux-Brit accent. We all laughed until we cried, and Mom laughed so hard that she covered her face with her newly available hands.

Good Company

Sunday morning was quiet at 10:30 when Suzy's family had all made it out the door to church. I read to Mom from chapter 17 of The Shack, and we talked afterward about God's faithfulness and poetry. I told her I hadn't prayed for her yet, and asked if she would like for us to pray together. Of course, the answer was yes. I offered to let her begin, and she replied, "No, you start. You're the starter."

So I prayed for a while, and then asked Mom if she would like to.

"Are you finished?"

"Yes, you go ahead Mom."

"Dear heavenly father, in the name of Jesus...we are so grateful for...you understand our failings, even though..."

I couldn't understand the rest of what she prayed. Her words were soft and indistinguishable but sincere. I opened my eyes and watched as her lips spoke to Jesus and looked for him under her closed eyelids. She prayed until she fell asleep.


Below are some pictures from Saturday.

Tina and Mom. Again, I had asked Mom to smile, and she gave me a wink.
Devon giving Grandma Rose some good by love.
Evan explaining the mysteries of fossilized rock to Devon. Charlevoix county has lots and lots of interesting rocks.
Evan showing Grandma her latest glamour shot. Again, Mom improvises with the request for a smile by throwing air kisses at the camera, here with Bill and Pattie.Suzy told me yesterday that Mom has been more alert and lucid each day this week. As always, thanks for your prayers.

Changes

When I left for Grand Rapids last Monday Mom had slept most of the day. Suzy told me Tuesday evening that Mom was still very tired and that there were changes in her demeanor and appearance.

Mom can be snappy, but she's always been just one word away from kindness. Last week, Mom was irritated and not very nice to Suzy. This is very unusual behavior for her. (Suzy might jokingly tell you it's status quo.) Her speech became quiet and a bit nasal. She had a difficult time finishing sentences and sometimes repeated the same word over and over. Most of what she said did not make sense, although it seemed she knew what she was trying to say. Much like she was a few weeks ago, but moreso.

When Corey and I arrived late Thursday night, I could see the change in Mom's face. Everything in her face seemed to have fallen a little, and seeing us after three days did not bring the usual smile to her face. She was interacting with the TV characters she was watching, occasionally acknowledging that we were there. The abrupt change was disconcerting. However, at bedtime she kept tradition with a sincere "I love you Patty" and kisses.

Dr. Karkosak thought it was one of two things: the effects of morphine or swelling of the brain from a tumor. We pretty much ruled out the morphine because she had been on the same dose for several days and this change was quick. Dr. Karkosak prescribed prednisone to bring down swelling if it existed. So we stopped the liquid ibuprofen and started prednisone on Thursday.

Friday, Mom slept until 2:40 p.m. When she awoke, she greeted me with a smile, told me she was feeling pretty good, and said scrambled eggs sounded wonderful. By the time Suzy and Corey returned from their trip to Petoskey in the late afternoon she was much more herself. Not to the extent that she was last weekend, but much different from Thursday. Everything that had fallen in her face was back in its sunny place.

Bill, Pattie, Tina and Devon came on Saturday and it was a good visit, replete with conversation and laughter. Tina brought a DVD from Mom's cousin, Eileen Milner, of Eileen's trip to the Czech Republic this year. Eileen and her daughters found the house in Andrejov where Mom's great-great-grandfather lived when he left for America. We watched it together.

This morning Mom woke up early. She is patiently waiting for me to post this update and return to the room with her breakfast. Suzy is making oven baked french toast for breakfast at the church, and Olivia is dutifully and desparately trying to wake her siblings to get ready. So, it's pretty much business as usual. What a blessing.

Mom's last labs came back good - a small rise in her hemoglobin, a small decrease in her white blood cells, no infection. She will continue with prednisone in gradually decreasing doses for a few more days, the Dr. Karkosak will reassess. I'll keep you posted.

The Best Medicine

Last week Mom's labs came back positive for a UTI. The first one in two months. This time instead of pills Mom is getting her cipro through her port. We just take her off the sodium chloride for the hour it takes the cipro to drip in, then hook it back up. Suzy's got it down. However, I messed up on the IV computer while changing bags. It didn't affect Mom at all, it just threw off the cc counter on the computer which helps us keep track of what she's received. I guess there's a good reason I'm not in the health care field.

Anyway, the cipro is doing its job, and so far we have not had to administer flagyl to prevent c. diff. infection. She has been getting yogurt every day with a special additive to encourage growth of good bacteria. Since it's been so long since her last UTI, Dr. Karkosak recommended witholding the flagyl until we knew we needed it. So far, so good - no flagyl.

Mom's appetite has improved. She is receiving her morphine through a 72 hour patch and receives liquid motrin four times a day. She is still taking her Toprol for blood pressure, and occasionally gets half an ambien to help her sleep at night. That's it. Such a change from a few short months ago when we were grinding 10-12 pills twice a day to mix into her yogurt. So much easier for her.

When the television is on, she sometimes has trouble distinguishing between people in the room and people on the program. She has thought at times that she was on TV herself. Last weekend, she was fascinated by several of the commercials. Her favorites were:

• Hillshire Farms - Go Meat! (Patty - those guys are back!)
• Silence Your Rooster (Isn't it cute!)
• Smirnoff (Did you see that?)

The conversation has been lively - sometimes zaney, sometimes profound. We never know what she'll say next. Predictability is out the window. Laughter reigns. Mixed with her snappy sense of humor, her responses are sometimes enough to knock us off our feet. I know I could never really do our exchanges the justice they deserve in the telling, but I'll try sharing a few.

(Motioning to the flag waving in the breeze across her door)
I just hate that thing.

(Mom to Evan)
I keep telling myself I need to get a fly swatter.
We have a fly swatter.
Where is it?
It's right over there.
Well, the flies are down here.
(Pat to Mom, when a small crash sounds from Evan's direction while retrieving the swatter)
I hope he's okay.
(Mom laughs) Oh, he bounces.

(Mom to Evan)
The less you talk, the less tedious you are to me.

(Watching God TV Sunday morning, Mom to Pat)
Oh, there's a guy in the window.
He's a preacher.
I don't care WHO he is!

(Trying to swat a fly on her arm)
Oh...I almost said damn it.

(Mom to Pat, smiling)
I just pulled a pistol on your friend.
You just pulled a pistol on my friend?
Uh huh. (nodding, smiling)
Which friend?
(Pointing to the flag waving across the doorway) That one.

We finished chapter 15 of The Shack on Sunday. The chapter was about heaven, reconciliation, redemption, communion with Jesus - it was beautiful. She wanted me to read it again, so we re-read the end of the chapter on Monday.

Sunday was the Kratochvil family reunion in Traverse City. Most of her cousins were there. Mom has not been out of bed since June; attempting a trip an hour and a half away and sitting up for hours would have been too much for her. I didn't tell her Sunday that she was missing the reunion, but I talked to her about each of her cousins so she had them all in mind. Aunt Dorothy told me later that the family had a moment of silence to remember Mom in their prayers since she couldn't be with them. So, they were together from a distance.

Our I love yous are still heartfelt and plentiful with lots and lots of kisses.

Following are a few pictures from the last two weekends.

Tami, Devon and Mom.

Tina, Makayla and Mom.
Tami and Mom.
What? Not another pair of sunglasses?!Mom laughing on Sunday. Mike, Mom and Tina.
Thanks as always for your continued prayers. They're priceless to us.