My Lymphoma Journey – learning to survive and grow during chemotherapy

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I recently found my notes on my first chemotherapy treatment.  Here’s hoping my experience helps those going through chemo, and their caregivers.

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In 2012, I was diagnosed with Waldenstrom’s macroglobulinemia lymphoma. Over the years, I developed anemia and a B12 deficiency. I’d save writing for the morning, as low energy levels rendered me useless in the afternoon.

My hematologist suggested chemo in fall of 2018 after my IgM protein levels reached 3300. (A normal level is below 250). Hemoglobin levels dropped as well. My hands fell asleep, and my right foot began cramping. If untreated, my type of lymphoma could progress to neuropathy and vision problems.

November 27, 2018 – First day of chemo

The nurses ran an IV drip of Bedamustine, mixed with saline, thus minimizing a burning sensation in the veins. Within a couple of hours, my treatment was complete, and I was free to leave. Hubby and I ate lunch at a favorite restaurant, and the rest of the day went off without a hitch.

November 28, 2018 – Second day of chemo

The nurses started Rituximab at 50 mg. After the dosage was increased to 100 mg, pain and bloat filled my gut, and the drip was paused. After 30 minutes, I was given steroids and Pepcid to ward off side effects from the drug. Anti-nausea meds were added to the drip. Another 30 minutes passed without issues. When the dosage was increased to 125 mg, within minutes, a headache, thirst, nausea and hot flashes ensued. The nurses dropped the dosage back down to 100, and left it there for the better part of the day. Later towards evening, they attempted to increase the dosage to 125 mg again, and reactions resumed. At 6:30 p.m., the on-call doctor, a striking Indian woman, looked at my chart and noticed I’d only been able to handle about 40 percent of the Rituximab.

“No more,” she said. “You’ve had enough for one day. Go home.”

The nurses flushed a bag of saline through my veins which took about another 30 minutes. Hubby and I were the last to leave the building.  Dinner was Bread Company drive-through. So spent, I couldn’t wait to get home.

November 29, 2018 – Third day of chemo

Treatment went smoothly with the Bendamustine drug – in and out in 2 hours, with lunch at a favorite restaurant.

That evening, I felt fine. I napped a bit, but awoke to the worst case of cottonmouth, and consumed massive amounts of water. I retreated to the recliner sofa, and once again, fell asleep.

Awakening with nausea Thursday morning, I phoned the hematology nurse for advice.

“Stay hydrated, and eat protein.”

I sipped homemade chicken soup and water. The nausea subsided temporarily.

After taking my gout and shingles medicine (for prevention) Thursday evening, I felt uneasy. I climbed into bed around 11 p.m. By 12:45 a.m. I awoke with excessive thirst, sweats, and breathlessness. My belly was extremely bloated. Drinking water to curb my excessive thirst, lead to repeated trips to the bathroom. Russell checked my heart rate with a phone app, which read 114. I awoke at 4:03 a.m., feeling nauseated. On a trip to the bathroom, I vomited water. So much water.

The soft glow of the entry ceiling light guided me to the living room. I settled in on the sofa, and sobbed. Russell, hearing my cries, sauntered down the hallway and garnered a seat next to me.

Stroking my sweaty hair, and wiping tears away with a Kleenex, he smiled, “Try and get some sleep.”

I shuffled my pathetic skeleton back to the bedroom, swapped my drenched nightgown for another, slid beneath the covers, and hoped to disappear like Alice down the rabbit hole.

Friday, 7:15 a.m.

A breakfast of Irish oatmeal, fresh raspberries, buttered toast and Ceylon tea seemed to satisfy. After munching the last bit of toast, I felt my belly swell. Nausea was constant, and I really needed to poop. Four days had passed since my last movement. I attributed my constipation to all the medication received.

Gazing at a reflection of myself in the bathroom mirror, I was unrecognizable.  Cracked lips, dry skin, dark circles under my eyes, were just a few effects of chemo. Had I morphed into a character on The Walking Dead? My anxiety railed off the charts.

I phoned the nurse three times in less than six hours.

“You keep asking her the same questions,” Russell mentioned.

Anti-nausea medicine was prescribed, which hubby promptly retrieved at the local Target. God bless him…this was his eighth trip to the store in less than 24 hours with my many requests.

Within thirty minutes of downing the pill, it came back up. I couldn’t seem to keep anything in my system. Sugary beverages made me gag, so I sipped hot tea, alternating with Kombucha and sparkling water.

By dinner, I was jittery and emotional. Adavan was prescribed by my doctor’s office. Yet another trip to Target by hubby…

“Take one now,” he insisted.

I called the nurse again and barked, “I’m not taking any of my meds!”

“That isn’t an option. Try and eat something, then take your meds, followed up by an Adavan.”

As I lifted the pill to my lips, I swallowed it reluctantly, followed by a drink of tea. Five hours later, the 10 p.m. news blared on the TV. I drew a warm bath for myself. While soaking, I reflected upon my experience, and prayed for better days to come. I headed back to bed.

When I awoke, the sun was shining, my head was clear. A new outlook, would bring better days.

“Do you feel better?”

“Yes. Much.”

“I’m glad.”

Just a bit of advice for those going through chemotherapy –

If you receive a cancer care packet from your doctor – read it. There’s really good information useful during your chemotherapy treatment and after. Ask your caregiver to read it.

Caregivers, be patient with your person. Whatever your loved one requests within reason, get it for them…at least for the first few days after treatment.

My husband was so caring, patient, and available through the process. There were days, even weeks, when I really didn’t know what I needed or wanted, but his support helped me figure it out.

Don’t be afraid to ask for help. But please, don’t get dependent on anxiety meds. Sometimes I just took a ¼ of a pill, or a ½ a pill, to take the edge off, a few days after treatment.

Taste changes after chemo for some people. It did for me. Meals savored on treatment days, I don’t care for – homemade chicken soup, pea soup, garlic, veal. I craved nutritious foods, baked chicken, broccoli, asparagus, raspberries, blueberries, red beets, kale, apples and celery – and still do.

Food like whole milk, eggs, or spicy, caused severe cramping for four to five hours after ingesting, or diarrhea. Yogurt, kiefer, bananas, tea and Tylenol aided in calming down my stomach during these episodes. The decision to avoid these foods until thirty days after chemotherapy treatments, helped cut down on instances. I now enjoy these foods, once again.

You might consider taking a break sometime during chemotherapy, if you doctor allows. My hematologist afforded me an extra week off in order to vacation in California between treatments.

We rented a beach condo in Malibu for a portion of our stay. Even though I was suffering from stomach issues, I spent time allowing myself to calm down.

The crashing waves, seagulls soaring overhead, the pier in the distance, dogs running on the beach, all took my mind off the lymphoma. With so many places to explore, hubby and I savored the drive along winding Topanga Canyon, spotted a coyote in the hills at Griffith Park, visited the Point Verde Interpretative Center, walked the marina at Redondo Beach, enjoyed the wild ocean while cliffside at Pacific Palisades, the comedy of Jeff Goldblum at the Rockwell, and the live taping of the Big Bang Theory in Burbank.

Best of all, unforgettable walks on Malibu Beach at sunset stirred my soul and soothed my worried mind. I was determined to remain positive during chemotherapy.

Lasting a full six months, with treatments three days a week (and a 24-day reprieve before the next treatment), six weeks after chemotherapy ended, I rang the bell at Siteman Cancer Center. I was in remission! See photo below!

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Here are some thoughts to keep in mind –

  • Be happy this day, and give thanks if you live a healthy life.
  • Be kind to others, because you never know what they’re going through.
  • Take joy in simple things….like golden, caramel, and creamy saw-whet owls you discover while looking ‘up’ at a log cabin’s eaves, the soft brush of a cat’s whiskers on your cheek, the aroma of a sugar cookie scented candle, sweet surprises from your loved ones (including the endless number of trips your husband makes to Target because you can’t decide what you want to eat or drink).
  • God has your back.

 

I wish you life!

Peace, love and sand dollars,

Sheree

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Sheree K. Nielsen is the award-winning author of four books  –

Her newest poetry and photography collection, Mondays in October, recently won the Royal Dragonfly Book Award: First Place – Poetry, First Place – Fine Art/Photography, and Honorable Mention – Coffee Table Books. Mondays in October is Sheree’s love song for the beach, and her eternal companion water. She’s dedicated the book to the Siteman Cancer Center Nurses who helped her make chemotherapy more bearable.

Ocean Rhythms Kindred Spirits – An Emerson-Inspired Essay Collection on Travel, Nature, Family and Pets, based on her adventures (Chanticleer Semi-Finalist for Nonfiction Guides – Insight and Instruction)

Folly Beach Dances is her 2015 Da Vinci Eye Award Winner, a healing coffee table book inspired by her lymphoma journey

and coauthor of, Midnight the One-Eyed Cat, 2019 Chanticleer Little Peeps First Place Winner for Early Readers, Montaigne Medal Finalist, and Foreword Indies Review Finalist

ALL DOGS SAY THEIR PRAYERS – PART TWO

My husband started a cute routine with the dogs awhile back – a prayer before their meals. When the pooches spot him with their food bowls, they know it’s time for dinner, but importantly, it’s time to be silent and listen to what Daddy has to say.

I tried my hand at this concept again this week at the beach. Food bowls in hand, I say a prayer at each meal. On a couple of occasions, our mini Aussie who knows how to ‘say her prayers’ even bowed her head in reverence.

My original blog post from May 2014 focused on the dogs being thankful for special things in their lives. However, I left one important element out. How could I? Let’s see if you can figure out what I left out.

Dear Heavenly Father,

Thank you for this food.

Thank you for everything you do for us.

Thank you for CHICKEN!

Thank you for long walks on the beach,

new canine friends,

long rides in the car over the intracoastal waterway,

and CHICKEN!

Thank you Lord for the screened in sun porch at the beach house

to observe passersby on Main Street,

and CHICKEN!

Thanks to Mom and Dad for the trip to the beach.

Thanks for letting us lick the bottom of the cappuccino milkshake cups.

And most importantly,

CHICKEN!

Sincerely,

 

Ms. Brina and Mr. B

Salty Dogs Morning

Well I hope this little dog prayer brightened you day. I know it did mine.

We’ve got a few more days at the beach, and I’m sure the dogs won’t let me forget to put some chicken on their Purina dog food.

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Sheree is the author of three books –

– Chanticleer nominated Ocean Rhythms Kindred Spirits

– Montaigne Medal Finalist Midnight the One-Eyed Cat

– 2015 Da Vinci Eye Award Winner Folly Beach Dances

Her work can be found here:

https://amzn.to/2NDanYo
https://amzn.to/2zLgqFm
https://amzn.to/2zNuoq9

 

What We Need, When We Need it. Learning to Trust God

This morning, I awoke early, riddled with anxiety from a concern weighing heavy on my heart from last evening. I tried praying my favorite Bible verse, “Don’t worry about anything, pray about everything,” over and over in my mind, but the more I prayed, the more restless I became. After thirty minutes of tossing and turning in bed, I glanced at the alarm clock which read 7:01. I sat up in bed, stretched my legs, slipped on my tan wool slippers, and greeted Red Dog who was by my side, with a pat on a head.

As I pulled the cord to open the vertical blinds in our bedroom, I gazed up at the moon, still high in the cornflower sky, with hints of waking from a cold Midwestern night. The sky delighted in a canvas of cornflower blue, and silhouettes of barren trees painted the serene landscape.

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As I purveyed the entrance to our clearing, a single deer appeared. I moved quickly through the house to locate my Nikon camera in the dining room. As I moved back through each room, I glanced out windows as I passed, and spotted two more deer, for a total of three. Two does and one fawn meandered gracefully west to east along the back yard of our property. At the boundary of our neighbor facing directly east, I snapped several photos. The creatures were bending, sniffing the ground, and looking up on alert. They traveled at a leisurely pace, repeating their routine. Parts of the ground were frozen and snow-laden, while oaky-hued ground laid the foundation.

As I pushed back the sheer curtains in the dining room’s bay windows, the dogs quietly whined when they noticed the deer, and Momma cat kept a tune with a low growl, her sleek body all the while brushing the windowsill.

I watched as the deer entered our neighbor’s yard directly across the cul de sac, and disappeared in the wooded area behind their home.

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I had hoped they would come full circle, and perambulate our yard a second time, enabling me to capture a few more snapshots. So much for wishful thinking.

I prepared my breakfast of oatmeal with blueberries and cinnamon, pumpkin bread, and English Breakfast tea. Rather than follow my routine and turn on the Today Show, I opted to sit and ponder my ‘wake up call’ by appreciating the wonders of nature outside my kitchen door.

The exquisiteness of the deer, the moon, the snow, and the trees, was just enough inspiration to take my mind off my troubles and anxieties. It forced me to slow down, and funnel my energy in a positive manner.

And although I received thirty minutes less sleep than yesterday, what I received in return was even more valuable and rewarding. My concerns are still near, but I soon realized I needed to replace my worry with trust.

God gives us what we need, when we need it. We just need to figure out how to use it.

God is good all the time. All the time God is good.

Now go have a blessed day!

Peace out and Love,

Sheree

 

 

 

 

 

 

What you Think you Heard (What I Really Said)

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Have you ever been in a situation or a conversation with a coworker, friend, family member, or loved one where no matter how great, wonderful, and positive your day is going, someone misconstrues what you said, words become heated, bringing your happiness to an all-time low?

Some people are quick to anger, or have a critical spirit. How do you react to ‘words that were put in your mouth’?

In your head, you’re thinking, “I never said that” or “What are you talking about?” or “What just happened?” although many times you remain quiet, and say nothing, lest you incite an argument.

We’ve all probably been the recipient (and accuser) different times in our lives.

No matter how hard you try to decipher misinterpreted words, often, it’s not possible. There’s got to be an underlying reason. Right? Maybe there’s something else on their minds, maybe they had a bad day….

Sometimes, situations escalate. You may not talk to that person for days, months, or even years.

Life happens. And in the scheme of life, Sh** happens.

The above phrase reminds me of my first girlfriend’s trip to Honolulu, Hawaii. On a strict daily budget, the four of us visited the local McDonald’s. After receiving our food, we garnered seats at a table, partially protected by a roof overhang in an open-air atmosphere. Deb and Cheryl sat under the roofed area; Jo Ellen and I sat outside.

As I began to nibble on my Filet-O-Fish and fries, I noticed several pigeons inching closer to our table.

“Don’t feed the pigeons, they’ll poop on you,” Jo Ellen advised.

I didn’t want to hear what she said. I just figured those pigeons must be hungry.

Soon, I felt a ‘plop’ directly on top of my head. A warm, white liquid began trickling down my bangs, onto my stylish sunglasses, and landing onto my Filet-O-Fish sandwich. Quickly, the tarter sauce and the ‘white liquid’ became one.

The feeling of misinterpreted words mentioned earlier, felt eerily similar to the pigeon pooping on my head.

So what can you and I do to remedy these situations?

With the pigeon poop dilemma, I located the nearest restroom, put my head under the faucet, and washed out the unpleasantry with clean water. I proceeded to enjoy the limitless beauty of the tropical island.

Sometimes, it’s not that easy with relationships.

The Bible tells us to stay calm.

Proverbs 14:29 says, “Whoever is patient has great understanding, but one who is quick-tempered displays folly.”

I especially like this quote from James 1:19-20 —

“Understand this my brothers and sisters: You must all be quick to listen, slow to speak, and slow to get angry. Human anger does not produce the righteousness God desires.”

Wow. What a powerful verse. Especially, the last sentence.

Human anger doesn’t produce the righteousness God desires.

Try to talk about what just happened with each other, in a calm, respectful manner.

Then pray.

The Feels Like Home blog suggests to pray for yourself, pray for the other person, and pray for the situation. People can’t change people. Only God can change people.

And above all, love one another.

Ephesians 4:1-32

“I therefore, a prisoner for the Lord, urge you to walk in a manner worthy of the calling to which you have been called, with all humility and gentleness, with patience, bearing with one another in love, eager to maintain the unity of the Spirit in the bond of peace. There is one body and one Spirit—just as you were called to the one hope that belongs to your call— one Lord, one faith, one baptism…”

Peace out, and love

Sheree

Coffee, and Currents

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For National Coffee Day, I’d like to share a poem I read yesterday from my devotional, “Coffee With God,” by Sarah Arthur.

She talks of how people run around like crazy, reminding her of a gerbil running on a wheel, or even an electric current zipping about.

Like Sarah, sometimes I feel I keep busy with stuff – some important writing goals and assignments, but sometimes time fillers…

Often times we don’t really recognize what God calls us to do. Help each other. Donate our time. Volunteer. Drive granny to the doctor. Rescue those poor dogs from the shelter. Walk for Freedom.

When you plan your day, or your weekend, will it include serving others or helping someone along the way?

Here’s that poem Sarah Arthur penned. Let me know what you think.

The current in me

is strong enough

to power a small life.

See: I zip around

my daily loops

with potential to shock

to make fingers tingle

and hair stand on end.

But if you were to

shut off

my circuit

unscrew the box,

take both ends

of my wires

and scrutinize

you would find

I only follow

 

the path of least resistance.

 

 

 

 

When God Says Wait…..

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I have a friend name Frankie. She’s a veteran. Not only that, she’s a vibrant, artistic individual with wisdom beyond her years.

She opened my eyes to a devotional called “Coffee with God” during the Christmas season. I love the book’s cover, and I love the way Sarah Arthur writes, inspires….the way she feels…..

Last Sunday, I had the privilege and opportunity to read communion meditation at both services. The message I wanted to convey was spelled out in Sarah’s Arthur’s devotional page entitled “When God Says Wait.”

It talks about praying, but not always receiving answers. How long must we wait? How long must we pray the same prayer day after day? (read insert below)

coffee with godAfter I read this message to the congregation, I spoke my own personal message. It goes like this ….

It seems we’re all waiting for something. And we’re not alone in this.

David tells us in Psalm 40 verses 1 & 2
“I waited patiently for the Lord;
He turned to me and heard my cry.
He lifted me out of the slimy pit,
Out of the mud and mire;
He set my feet on a rock
And gave me a firm place to stand.”

When Jesus died on the cross and wiped out our sins, he pulled us out of our slimy pit.  He knew right here, right now, we’d be reflecting on his sacrifice of that fateful day.

I believe the most important thing we’re waiting for is Jesus return.

I can just imagine that day in my mind….

As he scoops me up in his arms, and tells me he’s heard all my prayers, and he loves me, and that the wait is over….

All Dogs Say Their Prayers

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My husband started a cute routine with the dogs awhile back – a prayer before their meals. When the pooches spot him with their food bowls, they know it’s time for dinner, but importantly, it’s time to be silent and listen to what Daddy has to say.

I tried my hand at this concept this week at the beach. Food bowls in hand, I say a few words at each meal. On a couple of occasions, our mini Aussie who knows how to ‘say her prayers’ even bowed her head in reverence.

Today is our last full day at the beach, and I’m a little sad. I found it fitting to speak a gratuitous prayer for all dogs everywhere.

It’s pretty simple. Here’s how it goes –

Dear Heavenly Father,

Thank you for all good (and bad) dogs all over the world.
Protect them in their travels with their owners.
Keep them safe from harm.

Bless their new canine friends,
And the people they’ve met along their journey.

Thank you for happy times at the beach and endless sunsets.

Let them experience new adventures.

Bless this food, and God Bless Brina and Mr. B.

Amen.

 

© Copyright, Sheree Nielsen 2014

 

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A Radish Lady, Coffee, and “A God Thing”

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This past October I taught a workshop titled “Every Picture Tells a Story” at the Jefferson Barracks Veterans Administration Hospital in St. Louis.  During the two classes, I met amazing veterans – one I will call Sally.

Fast forward to this week. The last few days brought me medical testing – CT scans, ultrasounds, and biopsies.  By Friday afternoon I was spent.

Although Sally’s week was just as stressful as mine, she sent an email saying, “I’m going to say a special prayer for you, and will continue throughout the day.”  That brought a smile to my face.

A friend of Sally’s gifted her a book,“Coffee with God”.  She mentioned that I should pretend the book was called “Cappuccino with God” (because cappuccinos are my favorite coffee drink.)

The author, Sarah Arthur, reflects with God, prays and explores ways God transforms us through our regular routines in a 365-day devotional.

Sally mentioned the book was instrumental with her New Year’s resolutions – she quit smoking.

The devotional for January 10 was titled “PESSIMISM AND WOBBLE”

I won’t go into detail, but the bible verse that Sally cut and pasted in the email references Philippians 4:6 – “Don’t worry about anything, pray about everything.”

That sentence hit me like a ton of bricks. Not because I was unfamiliar with this bible verse, but because it was my daily creed.  Whenever a friend is having trouble, I share this verse, recognizing it helps me through my trials.

I decided to go to Sarah Arthur’s website and read more about the book. I hopped onto her blog and noticed a comment she left on a particular day. That day just happened to be my birthday. Feeling like this was not a coincidence, but a ‘God thing’, I searched Amazon.com and ordered the book immediately.

The series of events from the minute I met Sally, all led up to yesterday afternoon.  God’s plan was in motion long before I met her.

Here’s the string of events:

At the Missouri Writer’s Guild Conference three years ago, I met Deb Marshall from the Warrior Arts Alliance. Deb recommended I teach the “Every Picture Tells a Story” workshop at the VA Hospital. At the workshop I met Sally. The students asked hubby and I to return and teacher another class. Sally, hubby and I conversed after the workshop outside and joked about the parking situation. I gave her my business card. She emailed me. I emailed her. We kept a string of emails going.

Yesterday, her kind words and thoughtfulness lead to God’s plan. He reassures I’m in HIS care and grace.

My angel-messenger from above, Sally, despite her hectic life, took time to be caring, thoughtful, and positive. And isn’t that what we all should strive to do? EVERY DAY!

Thank you Sally for being there when I needed someone. I’ll try and heed the words from Philippians 4:6.

And by the way ‘Radish Lady’, you’re a fabulous writer!

No Prayer Wasted…

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Chances are if you’re reading this, you’ve stumbled across my favorite bible verse paraphrased in the title. It’s Philippians 4:6 – Don’t worry about anything, pray about everything.

I try to practice this verse, daily.  Sometimes I forget.

The verse helped comfort me ten days ago when I went in for a temporal artery biopsy.  That’s where they remove parts of your temporal artery to check for an auto-immune disease called temporal arteritis.

Only a thirty minute procedure, I prayed so as not to focus on all the tugging, pulling, and cauterization happening on the left side of my head. I thought about other things too, like what’s my husband doing in the waiting area, did Pastor Tim show up, and where I’d like to eat lunch.

Praying helped me through this time, and before you knew it, the procedure was over.

Then there was the waiting period for the test results.  The surgeon originally said two to three days.  Two days turned into five, five turned into seven, and seven turned into ten.  Finally, yesterday morning, I received the good news test results were normal.  God is good.  Not just some of the time, but all the time.

I turn my thoughts to friend Dave Reed, diagnosed with a rare form of cancer – histiocytic sarcoma. Back in 2012 he was given three months to live.  A testimony that God heals at the hands of skilled physicians, Dave received his second stem cell transplant a month ago.  Last week Dave rang the bell at Siteman Cancer Center in St. Louis. He’s in remission.

Prayer comforts during life’s trial and tribulations. Sometimes when you get that gut feeling, an intuition something is ‘not quite right’ and you need to make a decision, that’s God letting you know, that either way, he’s there for you no matter what.

So this Thanksgiving, pray for a wonderful time with family. Pray for safe travels. Pray that our country. Pray for our veterans. Pray for Aunt Millie or Uncle Johnny. Pray for your babies – even if they’re the four-legged kind.

No prayer is ever wasted.

No prayer goes unheard.

And if you’ve never prayed before, might as well try it.

He’s listening, and he’s got your back.