Wait (it’s Not Always Easy)

Waiting with hope. It's not easy. http://wp.me/p2UZoK-vN via @blestbutstrest #caregiver
After Pedro’s stem cell transplant, we settled in to wait. Wait for the stem cells to race to repair all that the chemo had killed. Wait for the doctors to discharge Pedro from the hospital. Wait for the release to return home to Montana.

Unfortunately, I had to wait in Bozeman while Pedro waited at his brother’s house, a 90-minute drive from the hospital. The delay frustrated me. I wanted a family reunion and a return to normalcy.

A couple of times a week we would try to talk via the Internet (remember that Skype hadn’t been invented yet, and computers didn’t come with cameras for video conferencing).

Pedro would chat with the girls and I would writhe in frustration at the poor graphics, the frozen images, and the inability to capture the subtle nuances of how he REALLY felt (part of this had nothing to do with technology and everything to do with the slow restoration of the use of the muscles in his face).

Had he gained any weight? Did he have any aches or pains that couldn’t be explained away by everyday occurrences? Had he sniffled? Did he get enough rest? Did his eye close all the way yet? (for months he had to sleep with a plastic guard taped over his eye because his eyelid wouldn’t close fully and caused his eye to dry out).

And the underlying question that picked and poked and nibbled at me all day long—was he still in remission? But, oh, I hoped. I hoped so hard it hurt. I spoke with confidence about the miracle God had performed in our lives—after all, Pedro had circled the drain on two occasions, and even the doctors and nurses agreed that he had experienced a miraculous recovery.

I hoped this reprieve, this miracle, would ‘stick’. That God really did intend to heal Pedro completely, even though I secretly doubted that we ‘deserved’ it. And maybe that was the crux of my worries. The problem that I quailed to ponder. Why? Why a miracle in Pedro’s life while other worthy people lost their battle with cancer?

Perhaps I suffered a bit from survivor’s guilt by proxy (after all, I had certainly suffered from chemo-brain by proxy). And so I waited with hope. I tried to draw near to God and not worry about his plan.

Hope acted as the thread that tethered my scattered thoughts and fears and kept me sane during those days of waiting. I knew that if the transplant failed, God still held me in his hands. We would be ok. I have a hope that burns within my heart of a new heaven and a new earth when God will vanquish all sickness and death. Yes, I had hope for the now and hope for the future.

Have you learned to wait for God? To wait with hope. Hope now and hope for the future. He’s calling you to wait with hope. Click To Tweet

Find more Comfort for Caregivers here.

Hope (and the Inspire Me Mondays Link Up)

#Hope smells like rotting grapefruit. #stemcelltransplant http://wp.me/s2UZoK-hope via @blestbutstrest #cancerHope smells like rotting grapefruits.

I’d smelled it before, as Pedro and I shuffled around Elven Long on our daily exercise laps.

The first time I smelled it, I joked with him, “It stinks just like the gymnasium did when you guys sold fruit last year!”

He looked at me quizzically, with his one eyebrow raised and the other one frozen in place. (more…)

Spoke

Angels work in cancer wards.  Some people call them nurses. http://wp.me/p2UZoK-vt via @blestbutstrestAngels work in cancer wards. I’m sure of it.

Ok, maybe not literal angels, but certainly humans who have a close connection to their Savior. How else could they show up for work each day with a smile and word of encouragement for the desperately ill on the cancer front?

How else could they treat each patient with dignity and love? How else could they deal with family members who probably get in the way at times and sometimes act more needy than the patient?

When the specter of death hovers nearby, they drop whatever they’re doing to answer the call button, and their very presence seems to suck despair from the room. Only someone the Lord has spoken to can do that. (more…)

Lavish

The most lavish gifts have nothing to do with presents-but everything to do with presence. http://wp.me/p2UZoK-vh via @blestbutstrestWe celebrated our most lavish Christmas three days early, and I can’t even remember where we were on Christmas Day.

I don’t remember what we gave as presents. But presents didn’t make our Christmas lavish. Presence did. Pedro spent ten glorious days at home with our girls—and the present of normality meant the world to all of us.

Sure, he’d looked healthier in his life, and when he smiled only half his face sort of knew what was happening. That didn’t mater. Sure, we had hospital bills waiting for payment and our credit cards had almost reached their limits (receiving treatment in a far-away city where we had to eat out and stay in hotels constituted our biggest health care expense). Those things didn’t matter either.

Our little unit of four had ten glorious days to spend in each other’s company. To reconnect and remember. To decorate a Christmas tree with the familiar ornaments and lights (which Pedro proudly put up—in keeping with a 14-year tradition). To bask in the beauty of Christmas carols, Christmas songs, the miracle of Christ’s birth. And the simple miracle of life.

From August to December, the girls had only seen Pedro three times—and two of those trips had been “You’d-better-visit-quick-it-might-be-the-last-visit-kind-of trips). We luxuriated in each other’s presence—not knowing how long it would be until we would be reunited again.

The joy of the season of birth invaded our season of grief at almost losing Pedro. We gathered around our electric fireplace in the evenings and shut out the world by turning off all but the lights on the tree and reveled in our presents. Not the ones under the tree—but the ones around it. Pedro. Laura. Sarah. Me.

It was our most lavish Christmas ever because sometimes, the most lavish gifts have nothing to do with presents–but everything to do with presence. (tweet this)

What memory of lavish comfort do you hold dear?

Find more of the story at 31 Days of Comfort for Caregivers.

I’m linking up with my friend Barbie Swihart for the Weekend Brew over at My Freshly Brewed Life, and Sandra at Still Saturday.

Long

Day 17 Long

Remission. The word conjured up hope, impatience and longing. I hoped that the remission would stick (unlike last time). I wanted the procedure to start yesterday, thank you very much. And I longed to have Pedro home again where he could recover surrounded by everyone who loved him.

The doctors uttered the sweetest word after a series of setbacks that left Pedro weak, hardly able to shuffle and with a partially paralyzed face. Remission meant the next phase of treatment could commence—stem cell harvesting.

The procedure involved another minor surgery—this time to implant a temporary port with four lines in Pedro’s neck to make harvesting easier. As soon as Pedro’s white blood cell count reached normal, he could have the surgery and then start a daily round of Nupogen shots to his stomach to encourage his bones to produce stem cells.

After three or four days of shots he would go to the hospital where they would hook the ports in his neck to a machine that would take blood out of his body, run it through a centrifuge to collect the stem cells, and return the blood via a different port.

Hospital policy based on insurance company norms dictated that stem cell harvesting could take place on an outpatient basis.

Which is fine if you live close to the hospital and have strength for the daily commute. Pedro had neither. And so we started the next crazy phase of our nomad life (unfortunately, they don’t have a Ronald McDonald House for adults). (more…)

Troubled

Day 16After my spelling lesson from God, I arrived at the hospital to make a difficult decision with Pedro—one that it turns out we didn’t actually have to make. But a worse trouble awaited us.

After another round of chemo, Pedro contracted a fungal yeast infection in his blood. With no white blood cells to combat the infection, his life once again hung in the balance.

I coped. Or I thought I did. Mostly I used the telephone line in the room for dial-up Internet. If someone needed to get ahold of me, they could call my cell phone. I opened an eBay account. I started bidding on Longaberger baskets. (more…)

Mourn

Mourn.  Sometimes, we have to mourn in order to receive comfort. http://wp.me/p2UZoK-uIMy cell phone rang in the middle of a team parent’s meeting at Laura’s gymnastics class. Pedro’s voice sounded worse, but I wasn’t sure if it was because of his facial paralysis or because he really was worse.

“I’m back in the hospital.”

I breathed deeply and gripped the phone. “Why?” I asked as I jumped up and hurried to the lobby. I knew he’d been feeling dizzy lately, and his back was bothering him.

“Doctor says we haven’t killed it. Dizziness from the cancer.”

“What are our choices?”

“More chemo.” Pedro’s voice sounded so discouraged. “Might not work.”

“Or?” (more…)

Dance

Mourning and dancing and tons of comfort http://wp.me/p2UZoK-tWThe blue sky simmered overhead and a gentle breeze twisted the golden leaves in a graceful dance. Sarah and I revved our motorcycles and headed carefully up dirt road towards Bear Creek.

It was a first. The first time I’d taken the motorcycles out without Pedro. The first time Sarah had ridden on a road. The first time I’d had a ‘date’ with her since Pedro’s hospitalization back in July. (more…)

Quick (and the Inspire Me Mondays Link Up)

#inspirememondays

Welcome to Inspire Me Mondays!

Here’s my contribution–I’m on Day 13 of the #write31days challenge issued by The Nester.

“But Jesus was quick to comfort them. “Courage, it’s me. Don’t be afraid.” (Matthew 14:27 NIV)

Tubes sprouted from Pedro like a crazy hamster maze. A team of nurses moved quietly around the room, taking vitals and preparing him for the doctor’s visit.

Pedro had ended up in ICU the day before I’d returned to San Francisco. He had been responding to the chemo, but the doctors decided he would need radiation as well. Before they could complete the process, Pedro lost his ability to swallow.

The doctors worried that he would aspirate or get pneumonia and so they intubated him and whisked him off to ICU where they induced a coma-like state. Once a day they would bring him out of the coma to check his ability to swallow.

“How long will he be in ICU?” I asked the attending physician on Pedro’s second day in ICU

“A week, maybe two.” he answered. “You have children, don’t you?”

“Yes. Why?”

“You might want to have them come down for a visit,” the doctor looked at Pedro’s chart and avoided eye contact. (more…)

Despair

Day 10Hymn and Him

Take My hand, child
It feels so dark I cannot see
Hold out your heavenly hankie, Father
Wipe away my tears

If that’s not in your plan because I
Need to shed them, then
Comfort all my
Fears.

I cling to simple facts
Your Son died for me. He is risen and
Will come again
(Must my comfort wait ‘til then?)
Oh, Lord, be Thou my vision

Let me make it through the night
Can you fill this gaping hole
Tubes and beeps and shallow
Breaths
Be still my soul

Sobs shudder to a stop. Vitals
Sink like the Titanic. You’ll
Shelter me in the midst of the storm,
Lord. Rescue me from panic.

I wrote this poem during Pedro’s stay in ICU, several weeks after arriving in San Francisco.   I knew God had his hand in everything that happened, but I still had whimpers of doubt and despair despite my faith.

And that’s ok.  Jesus himself felt moments of despair (the Garden of Gethsemane).  Throughout our caregiving journeys, we have the assurance that Jesus suffered and knows our despair.  He will help us through.

As Paul says, “We are hard pressed on every side, but not crushed; perplexed, but not in despair.” (2 Corinthians 4:8, NIV)

God IS near.  He knows your every sigh of despair.  Hold on.  His hand reaches out to you. (tweet this)

Have you ever felt a moment of utter despair in your caregiving journey?  Share with us.