I'll be Seeing You

The novel, The Notebook, and the movie by the same name, has always reminded me of our love. This is a song from the movie and is fitting as a memorial to Steve, the love of my life.

In Memory of Steve Guillory, my Best Friend.

In Memory of Steve Guillory,who learned to dance in the moonlight.

    This song was released in 1973, the year we were married.

"Midnight at the Oasis"

Steve sang the chorus of this song, "Midnight at the Oasis," by Maria Muldar, many times while in the hospital. It was released in 1973, the year we were married. It gives me great joy. Created by your "Bride," Robbie.

The First Time Ever I Saw Your Face

Steve Stepped into Heaven

Steve stepped into heaven, Thursday, February 17th, at 5:15 pm, surrounded by his sister Cindy and his wife. There will be a Memorial Celebration Service held for Steve, Saturday, February 26th, at 1:00 pm, at Johnson's Funeral Home in Lake Charles: 4321 Lake Street (337) 478-8687.

 

There will be food and fellowship for friends and family afterwards for those that wish to attend. We're still working on locating a fellowship hall. I'd like to get Christ the King Catholic Church on the Gulf Highway, where Steve and I had our wedding reception in July of 1973, but will have to call Monday.

Thank you for all of your love and prayers that sustained us and will continue to sustain me and our families as we celebrate Steve's life.

 Love to you all,

 

The Joy of the LORD is Your Strength,
Robbie :)

Home

Steve went home to heaven this afternoon at 5:15. I'll write more later.

Beginning of the End of the Beginning of Forever

Four weeks ago yesterday, Steve arrived at by ambulance from Tulane Medical Hospital in New Orleans to be at home on hospice care.

His nurse's assessment of Steve today is that it is, "the beginning of the end, he has begun the dying process."

I'm numb. I'm humbled. I don't know what to feel. I'm grateful. I'm humbled to be here for Steve to guide him through death. What a privilege.

I like to think of it as the Beginning of the End of the Beginning of Forever. It may be the beginning of the end of Steve's life on earth in his "earth-suit," but it is the beginning of forever, an eternity with God through Christ in his new body.

I will follow Steve one day in shedding the cocoon-shell here on earth and walk with him on streets of gold in heaven. Until then....I will continue to dig for the treasures to be found here.

In the early afternoon today, a mechanic came to trouble shoot Steve’s truck before I sell it. My brother Matt asked him to come. He preaches on the side and asked to pray with me at our doorstep. What a blessing.

A Goodbye Note

Yesterday Steve spent most of the day asleep. He was unusually weak and walked very little. This morning I awoke at 6:30 and I went to check on him. He was near the bedroom door lying face down on the floor. As I turned him over he said, "You shouldn't park a human being like this." I told him he must have fallen. He said, "Oh. Am I supposed to be standing up?"

I gave him his medicines, fed him through his feeding tube, and scooted him over to the bed. He was able to help enough to get him back in bed. As he sat on the edge of the bed, he looked right in my eyes and said, "I don't know what this is. I don't know what this is."
"You're dying Steve."
"I'm dying?
"Yes."
"I've got to tell my momma and daddy goodbye."

"O.K."

"They're good people."

"Yes they are. Pere-Pere is in heaven.  Do you want me to call Maw-Maw? "

"Yes. I need to leave her a goodbye note. A goodbye, hello note." And he lay back in bed.

He was then quiet for a while, so I asked him, "Steve, what are you thinking about?" He said, "How much I love Jesus and how much I love God." He asked, "How much time do I have?" I told him, "I don't know when you will die, Steve."

I tried numerous times to call Maw-Maw before she was finally able to call me back. In the mean time I had leaned over Steve and said in his ear, "I love you Steve. This is Robbie, your bride." He replied, "I love you. Forgive me for being a fool. Forgive me for being a fool."

"I forgive you Steve. I forgive you. I love you." Thus starts my day.

Sense of Humor in Tact

I was trying to distract Steve this afternoon from his ideas about us moving, so I asked him if he'd like to sit down and draw. He took pre-architecture at McNeese for two years, so he always could draw well, although his hand-eye coordination leaves much to be desired now.

I opened up a TV tray and got out paper and pencil.

He was standing next to the couch and said very seriously, “I have this disease.”

I thought, “He sure changed the subject quickly.” (He has been doing that a lot lately.)

“What disease do you have?”

“The disease is called, ‘The-more-you-draw-the-worse-it-gets.’”

I could not stop laughing.

Moving Day

I've been reading, The Final Act of Living: Reflections of a Longtime Hospice Nurse, by Barbara Karnes, RN. She mentions that in the months before dying, a patient will speak in what seems like a code, symbolic rambling, which if you are in tune, may give the caregiver insight into what is going on in their loved ones mind and heart.

Steve believes we are moving. He wants to gather things up and box them. Today, he was rearranging furniture to load up to move.

To distract him, I got out some old poker chips. This entertained him for a while, until he started putting the chips in his mouth. Not having a stomach and having his esophagus sewn to his small intestines would make for a digestive problem if he were to swallow one of those poker chips! I took them away.

Death to our body is just a moving day for our spirit and soul. That is when you "cash in your chips" not swallow them! Steve’s packing.

“We are confident, [I say], and willing rather to be absent from the body, and to be present with the Lord.” 2 Corinthians 5:8

Picking up Butts

While Steve slept this afternoon, I walked to the front of the house and discovered a pile of cigarette butts that had fallen out of Steve's truck when it was being washed the other day.

As I picked up the ends of these former cigarettes, I thought about how things would have been different if Steve hadn't heavily smoked and drank.

He sucked on each cigarette until there was nothing left, and then threw away the butts. Now, the cancer is sucking on him.

I was thinking of all of you that smoke and are thinking, "That won't happen to me. I can stop whenever I want." Steve said that. I guess you think you won't die either.

"And inasmuch as it is appointed for men to die once and after this comes judgment," Hebrews 9:27

READ THE FACTS from: http://www.cancer.gov/cancertopics/tobacco/smoking

Tobacco use is the leading cause of preventable illness and death in the United States. It causes many different cancers as well as chronic lung diseases, such as emphysema and bronchitis, and heart disease.

• Cigarette smoking causes an estimated 443,000 deaths each year, including approximately 49,400 deaths due to exposure to secondhand smoke.
• Lung cancer is the leading cause of cancer death among both men and women in the United States, and 90 percent of lung cancer deaths among men and approximately 80 percent of lung cancer deaths among women are due to smoking.
• Smoking causes many other types of cancer, including cancers of the throat, mouth, nasal cavity, esophagus, stomach, pancreas, kidney, bladder, and cervix, and acute myeloid leukemia.
• People who smoke are up to six times more likely to suffer a heart attack than nonsmokers, and the risk increases with the number of cigarettes smoked. Smoking also causes most cases of chronic lung disease.
• In 2009, approximately 20.6 percent of U.S. adults were cigarette smokers.
• Nearly 20 percent of high school students smoke cigarettes.
  (See Tobacco Statistics Snapshot for references for this information.)

January 26: I Am the Book

I feel my life right now, is like one of those novels that you save to read only at night, because the story, the words, the characters, the plot can make you laugh, cry, be in suspense, in expectation, and you can feel what the words say as they wash across your soul.

It is surreal; I have experienced all these things today....and it's my life. Tonight, when I do go to sleep, I don't just turn the page, put in a bookmark and turn out the light. In the morning...my husband is still dying.

This is my story. I am the book.

February 3: Even If I Can't Sleep

I feel very alone, fat, and inadequate. Where is God's will in all this? My soul is being purged through sleep deprivation.

Found out today, that because I don't have Medicare, respite care and physical therapy is not paid for by my insurance for Steve. 

The Westlake High School-Student Counsel (where I taught) graciously sent over $305 they raised and a box of my favorite snacks.  I've never had so many of my favorite indulging snacks in such close proximity to each other...all touching! Guaranteed to gain enough weight to get me over the 180# mark in just three days.

Nili called today. Feel like, for the most part, all the children have detached; wish I could.

Ok. I praise, I ask for forgiveness, I pray for patience. Where is Your presence? How do I do this? What eternal purposes are designed to glorify You through this? I feel like I just need to run without stopping.

Oh, I just remembered, BCBS doesn't cover "Crisis Care: Caregiver Breakdown." Great, right?

This is where Jesus says, "Gottcha covered....by My blood." What a great assurance policy.

Now I can breathe, even if I can't sleep.

What's Going to Happen When You Die?

I videoed Steve answering questions about the disease and dying. He was very candid and honest. I’ll let you hear from him yourself.

Are you ready if you were to die today? Yesterday, my sister-in-love, Glenda, died suddenly at home. She and Steve’s brother, Greg, were just here two weeks ago to comfort and encourage me and Steve. Today, I called to comfort Greg. Ironic. Be ready, Glenda was.

Always be Loved

The doctors tell us that the rare, very aggressive, sarcoma cancer has metastasized to the part of Steve’s brain called the hippocampus.  This is the part of the brain that is affected in Alzheimer patients, so he presents some of the same symptoms and behaviors. Yesterday, during a particularly lucid moment for Steve, I decided to ask him some questions and videoed his answers.

“Steve, before you die what would you want your son, Patrick, to know?”

“Everything I don’t know. And explain God earlier than I learned Him.”

“What things do you want your daughter Nili to know?”

“Learn and know God and learn that He is more of a God than other people think.”

“What is the most important thing you want your daughter, Joanna, to know?”

“Always love her.”

“What do you want your wife, Robbie, to know and remember?”

“Always love her the best I know how.”

“What do you want your mother to know?”

“That she’ll always be loved.”

Are there things you always wanted to tell those you love, but haven’t taken the time or the opportunity to do it? Now is that time.

Getting Ready for New Owner

Today a gentleman is cleaning and detailing Steve's work truck to get it ready to sell.

Getting Ready for Transfer of Title

Steve practically lived in that truck: listening to talk radio or oldie goldies, parked at the park to write customer tickets and mail accounts receivable, munching on cashews all day, servicing swimming pools, or just sitting and pondering how to solve the problems of the world.

Of course, it was his traveling bar; the large ice chest always had a case of beer iced down (breakfast and lunch.) I was always amazed at his tolerance for alcohol; two to three six-packs a day, and he could still drive a straight line.

Oh, and the driver's side window was always rolled down; Steve loved to feel the fresh air. Well, when he wasn't smoking two - three packs of cigarettes a day. That too, amazed me. Other than high blood pressure, he always seemed so healthy. It was a puzzle to me, but I knew this day was coming.

Seeing Steve's truck being cleaned out, vacuumed, washed, rubbed, polished, and shining, reminded me of the new beginning Steve said he wanted, the night before they removed all those body parts at Tulane Medical Center in New Orleans.

"Robbie, I've been a louse all my life. I want a second chance to be a better louse, father, parent, husband...without the booze and nicotine."

"Honey, we're all louses. Jesus makes the difference. When we give our lives to Him, we are no longer a louse. We become a new creation. Old things are passed away, behold all things are new. We're new creations in Christ...that sometimes feel lousy."

As Steve's truck is being prepared for a new owner in the drivers seat, Steve is getting that "second chance," but I'd rather call it "a new beginning," for the new ownership of God through Christ Jesus to receive him in glory...a transfer of title.

This makes me smile.

Guess Who's Coming for Breakfast?

Well, the tide ebbed again (see previous post).

Steve had his evening meds at 9:00 pm and fell asleep. I asked him if he needed anything, as I tucked him in bed; he said, "I just want to be next to you." Priceless.

Then, he was up at 11:00 pm to go to the bathroom; I couldn't get to sleep until around 2:00 am. At 3:30 am he's up again for bathroom, then at 6:30 am, the motion detector alarm in my bedroom went off; Steve was walking down the hall from his bedroom.

He was fully dressed, socks and shoes, and was ready for breakfast. He started digging in the refrigerator and pulled out: a carton of eggs, leftover chili, and bar-b-que chicken. He put these items and a black iron skillet on the counter and said they could thaw out, he was going back to bed. Whewww!

Once in bed, he asks, "Is the mayor still coming?"
The mayor?
"Yeah, I thought we were expecting the mayor."
"Well, I hope the mayor doesn't show up for breakfast, because I'm going back to bed!"

We are expecting a gentleman to come around 8:00 am to clean and detail Steve's truck to get in sale-ready...I hope he's not expecting breakfast.

Ebbs & Flows

Someone texted me this morning to ask how I was doing; I relied, "It ebbs and flows; today it flows...we slept last night."

I was thinking about ebbing and flowing. That is what the tide does at the beach, due to the gravitational pull of the moon, I think. If the ocean always flowed the land would be flooded, if it always ebbed there would be no ocean.

Why do we think that all is well only as long as everything is "flowing" in our direction? I know why. For me, when it is flowing, I feel rested, full, enriched, buoyant, and blessed. Is there only a blessing when the ocean is flowing. Why would God have the tide ebb and flow? Would there be a blessing in one and not the other?

Have you noticed that when you are at the beach and the tide is out (ebbing) you can see all of the "junk" that is at the bottom on the shoreline. Some real nasty stuff, yet many times you can find treasures: beautiful shells, starfish, lost items of beachcombers gone by.

When the pull of this world, this day, this moment, causes the tide of God to seemingly pull away, I know that it is part of the plan. It is purposeful. The ebbing and flowing of life is the cycle that God designed.

As the tide ebbs and I see in myself all the "junk" that had been hidden...I repent, I ask for forgiveness, then I look for the treasures: forgiveness, righteousness, peace, joy, and love that never fails. Then, as I wait...the flow comes!

This moment, it is flowing. Why? Because I slept last night. If it ebbs before the day is through...I will repent and comb the beach of my heart for the blessings. The cycle continues....

Sleep, Glorious Sleep!

After hot chocolate, chocolate chip cookies, and meds last night, Steve and I went to bed around 1:00 am.  It's 8:41 am and he is still sleeping. Because of that: I have showered, put on make-up, rolled and fixed my hair, put on clothes, and actually awakened without an emergency to tend to. I haven't done that in over a month...uninterupted! It's 9:24 am now, and I've even eaten breakfast and read some of the paper. So...I reveal the sleep refreshed version of myself. We are going to have a great day! My prince will wake refreshed too!

Ask, Seek, Knock



Matthew 7:7
"Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you:"

Last night and this morning were rough. Even with medication, Steve was up in the middle of the night, restless, wandering in the back yard. Then, early this morning he's out the front door, in the rain, laying on the wet ground under his truck trying to "fix-it." My brother disabled it, thank God!

I'm so exhausted. I want to pray, but don't know what to ask for. What do I seek for? Where do I knock? I know I have needs; other than sleep, what are they?

Pray in tongues. I have always had time & made time before, now I don't even remember to do that. What is wrong with me?

Is my husband dying? He is motivated, even in his confused delirium, to fix things, go to work, show hospitality, "read at" the newspaper, drive his truck, do routine things (even if it is 3:00 am).

He wants to visit on the phone with friends & family; although his phone is not working right. He even sat at the computer (he doesn't even know how to use the mouse).

I'm so empty. Do I medicate him so that he's more manageable for me or do I let him stay outside in the rain, laying on his back up under his truck trying to fix what disabling did, so he wouldn't drive it?

How do I explain: we haven't won the powerball, there is no "magic machine," we haven't lived in CA for 15 years & the motorcycle he keeps wanting to ride was sold that long ago, too. He looked under the bed for quite a while looking for his, "black leather motorcylce boots." I don't think he's ever owned boots like that.

I've explained he has cancer. I did not say the doctors sent us home to die. It was that or a nursing home. How am I any different: restraints, sedating, ignoring. When I'm so tired I don't have energy to entertain or even converse with him.

I'm busy being hyper-vigilant. It's as if a six foot two, angry, determined & strong toddler is in the house: potty training, childproofing, securing exits so he doesn't escape, preventing falls, hiding sharp objects, removing all guns. Then, just when I think I can't do it any more, he wakes, shuffles over to where I am lying down, leans over, & kisses me.

What is not to love?

He's up now & I still haven't slept. There will time for that later. I'm going to look for him while he is still here.

Dangerous and Exciting

It's been two weeks today that Steve was transported by ambulance from Tulane Medical Hospital in New Orleans to our home, under the direction of Odyssey Hospice.

I would have blogged sooner, but my computer was down and taking care of Steve round-the-clock has been more than I expected. Although, I don't know what I expected, but it has seemed like a sink-hole treasure hunt at times...quick sand, in fact.

Coached by the Odyssey nurse, my daily routine roughly consists of taking blood pressure, checking blood sugar, giving medicines, administering liquid diet through feeding tube in intestines (his stomach was removed), and somehow getting him showered, diapered, and dressed for the day.

Because doctors removed Steve's pancreas, he is diabetic, so I'm sticking Steve's finger three times a day to check blood sugar

• giving insulin injection if blood sugar too high
• injecting routine insulin twice a day
• crushing up to five different pills twice a day
• numerous liquid meds

Oh! Did I mention I'm a high school English teacher, NOT a nurse? What we do for love....anything.

Now the fun part:

Steve has moments of delirium where he doesn't know where he is, which way is to the bathroom, what year it is, or why I'm not at school teaching. A side effect of a long history of drinking alcohol, Steve behaves at times like a "dry drunk," even though he hasn't drank since November 1st, when this all started.

The angry, hostile, paranoid, verbally abusive, violent, non-compliant alcoholic I've lived with for over 30 years, reappears...in the middle of the night, during the day, early in the morning...never quite know when to expect "him."

At other times, Steve is the man I married: sweet, kind, thoughtful, considerate, hospitable, caring, loving, the God-fearing man of integrity and faithfulness that warms the cockles of my heart and is the reason why I do what I do.

Suffice to say, this treasure hunt has been adventurous...dangerous and exciting.

Hospital Time Warp

If you've had a loved one in the hospital for any length of time, you know that a hospital operates on an entirely different dimension of time.

• The test that is scheduled for 2:00 pm might be done by 4:00 pm.
• The surgery that must be done by 6:00 am that morning may be bumped to the next day, due to surgery for someone with a more urgent need.

In Steve's case, the case manager’s hurry, hurry, hurry yesterday to get him discharged and home today, (because the insurance company doesn't want to approve any more days) turns into doctor's orders...he's not weaned from IV drips, so he won't be discharged until it will be a smooth transition. THANK YOU! It is a monies game when it comes to healthcare...and this is without Obama-Care! Oh, if Steve were in his right mind...he'd have something to say about this; he's an avid FOX News-O'Reilly-Glenn Beck fan!

Bottom line, Steve is not coming home under hospice care today, but most likely tomorrow. We are on God's path of life and time table for Steve.

"The lot is cast into the lap, but the decision is wholly of the Lord [even the events that seem accidental are really ordered by Him]." Proverbs 16:33 Amplified Version

Irony

Picture taken October 8, 2010, less than a month from when we learn he has a sarcoma mass the size of a small cantaloupe in the upper lobe of his right lung. Here, a cantaloupe from our garden. Ironic.

Everything Changed

November 1, 2010, everything changed for me, and my husband Steve. The severe pain that warranted an emergency room visit that day, revealed a large mass in his right lung and on his left adrenal gland.

• Two-and-a-half weeks later, he has lobectomy of right lung.
• Two weeks later, a mass on the head of his pancreas is discovered, blocking his bile duct.
• Four days later, diagnosis is a rare lung sarcoma.
• A week later, surgery removes cancerous: duodenum, stomach, pancreas, gall bladder, spleen, and left adrenal gland.
• Scan of head, three weeks later, suspicious of metastasized to the brain.

Eleven weeks and two days from first ER visit in November, he's coming home on Hospice, January 18, 2011. The odyssey continues.