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

Mondays in October – My love song for the beach, and her eternal companion water – dedicated to the St. Louis Siteman Cancer Center nurses

Mondays in October….Happy Book Birthday Baby!

July 30 – published by Shanti Arts, Maine

For me, this collection is about time, nature, art, movement, and learning to slow down. During the creation of this book, I was forced to take a step back and look at life differently. In November 2018, I began chemotherapy for Waldenstrom’s lymphoma.

At the end of April 2019, chemotherapy was finally over. As for life, well, I imagine things in a simpler light. I’m in remission. I’m grateful for a publisher like Christine of Shanti Arts who was both patient, understanding, and kind, throughout the book’s journey.

I’ve dedicated Mondays in October to my husband, my fur babies, the tango dancers Elise and Marco who I met on the beach that Monday in October, and the St. Louis Siteman Cancer Center nurses who aided in my longest days of treatment with a smile, a kind word, and even a joke.

The photographs and poems are places, people, animals…and nature….that I hold most dear. They are my gift to you…..my love songs for life.

“Like the cricket’s song serenading a marsh at sunset, the wind’s harmonies causing waves to lap to shore, or two lovers dancing the tango in the sand, Sheree K. Nielsen’s Mondays in October’s collection of poems and photographs suggests easy movements in nature, and a time for us to slow down… like October…and imagine a simpler life.

Mondays in October are Sheree’s unmistakable love songs for the beach and all things water – vulnerable, blissful, and sensual.”

Here’s a page from the book titled Red Dog’s Observations at the bottom of my blog page.

Red Dog was diagnosed with a malignant tumor in his heart on Monday. We are cherishing our days with him….however many sunsets he still has….

This post is for him.

Peace, love, and sand dollars,

Sheree

The River – Going With the Flow (Ethel + Robert Mirabal)

 

 

20190224_205925My long friend Tina, surprised me with tickets to see The River performed by Ethel + Robert Mirabal at the Blanche Touhill Performing Arts Center on February 24 at UMSL. I really had no idea what to expect as I’d never heard of the group before, so I settled into the comfy theatre balcony seats.

The River embodied the ritual of the Native Americans gathering near the water for events – the the birth and baptism of a child, a celebration, washing their clothes and bathing, among others. The river forged a sense of community among the people, as they would always return to the water, creating an essential spiritual role in the Native Americans lives.

Mellifluous sounds expressed through violins, flutes, and spoken word about how the river connects people throughout their life, was blissful solitude to hear. Robert Mirabel shared stories about his Native America heritage as well.

Their performance overwhelmed me with gratitude, and brought me to tears. For me, I felt connected, just being an audience member. At times, the music was so meditative, my eyelids felt heavy with slumber. I identified with The River’s concept that water is life – holding close to my heart trips to the ocean and the Great Lakes.

Waiting patiently until the audience had left, Tina and I were able to meet and speak with the group in the performing art center hallway.

I expressed thanks to Robert that the music brought me peace after recent chemotherapy treatments.

As tears welled in my eyes, Robert placed a colorful braided necklace over my head. The coral, crimson, maize, and burnt umber strands highlighted a pendant in the shape of an animal carved in wood.
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“This is Mama Bear. Mama Bear protects,” Robert smiled.

He lifted his left hand and interlocked his fingers with mine.

“Go with the flow of the River.”
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Peace, Love, and Sand dollars,

Sheree

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Sheree is the author of four books –

– 2019 Royal Dragonfly First Place for Poetry, First Place for Fine Art/Photography, Honorable Mention for Coffee Table Books Mondays in October

– Chanticleer nominated Ocean Rhythms Kindred Spirits

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

– 2015 Da Vinci Eye Award Winner Folly Beach Dances

 

https://amzn.to/2wMXzeo

Seventeen Days Since My Veins Were Filled with Poison

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I recently went though my first round of chemotherapy for Waldenstrom’s macroglobulinemia (lymphoma), and I was prepared to dump on the world six pages of my experience and disparity. I decided no one wants to read that much content. Instead, I wrote a poem that reflects my feelings on the chemotherapy process. Cancer sucks. No doubt about it.

Seventeen Days Since My Veins Were Filled with Poison

 

Seventeen days

Since my veins were filled

With

Poison.

 

Funny how you need

Poison

to kill

poison.

 

Chemotherapy –

The Mother

Of all

Duckers.

 

Thirst,

Sweat,

Heart palpitating,

Throat closing,

Vomiting,

Gut wrenching,

Belly swollen,

Cracked lips,

Crashing,

Unrecognizable

Self….

 

Hopeless,

Tears,

Zombie skin,

Sunken eyes,

Anxious,

Dehydrated,

No taste.

 

Lifeless.

 

Crawling back

To reality….

Slowly,

Steadily.

 

A magenta-hued sky

over a bronze meadow,

The soft brush

of a cat’s whiskers,

The aroma of a caramel-scented

sugar cookie candle,

The gaze of a

saw whet owl

penetrating your soul,

The Snoopy and Woodstock

animated mailbox –

 

These are the medicines

of life…

Folly Beach Dances – October events – South Carolina

Good things are coming down the pike!

We’ve got a full schedule for our book tour and events, and will be in Folly Beach real soon promoting FOLLY BEACH DANCES – The Infinite Rhythms of a South Carolina Seashore.

Here’s a list of some upcoming events in October.  You can find a full event listing at the official FOLLY BEACH DANCES website

We’re currently in the process of shipping more books to Amazon, but you can order from the book’s official website above. Books will be autographed and will include a surprise with each order in September and October!

 

October 19, 2014 Black Majic flyer 8

Folly Beach Dances booksigning

Black Majic Cafe

10:30 a.m. to 12:30 p.m.

103 West Erie Avenue

Folly Beach, SC

 

October 18, 2014

Follypalooza Cancer Fundraiser

Stop by our booth.  We’re sharing a booth with author, Diann Shaddox, “A Faded Cottage”!

11 a.m. to 5. p.m.

Center Street

Folly Beach, SC

 

October 15, 2014

Folly Beach Branch Library

Folly Beach Dances booksigning

2:30 to 3:30 p.m.

55 Center Street

Folly Beach, SC

 

October 14, 2014

Hollings Cancer Care Family Support Group Meeting

(Guest Speakers – Sheree and Russell Nielsen)LLS cancer care meeting oct 14 charleston001

86 Jonathan Lucas Street., Room 121

Charleston, SC 29425

11:30 a.m. to 1 p.m.

 

 

 

 

 

 

October 8, 2014

O’Fallon Photo Club Meeting

The book’s journey – Folly Beach Dances

7 p.m.

Renaud Spirit Center

2650 Tri Sports Circle

O’Fallon, MO 63366

 

 

 

A World Vision sponsor child from Thailand thrives

A letter I received in the mail last week from World Vision International thanked my husband and me for helping our sponsored child Pattraporn over the past five years.  Apparently, our generous support made a huge impact in her life.

The letter went on to say that her community, Phan Thong, was concluding its final stage of development and completed its goals of becoming self-reliant.

It’s sad to say goodbye to a child that we’ve come to know and love.

A card and envelope was enclosed to pen her a farewell letter.  This mailing procedure was a little different, as we wrote our home address on the back flap of the envelope.

In my eyes, World Vision, is amazing.  I watched Pattraporn’s development from an impressionable young girl blossom into a happy teenager.

In my first correspondence to Pattraporn, I enclosed two photos (one of a colorful fish taken while scuba diving), three beaded bracelets and a ribbon.  Although, the children are able to receive gifts, World Visions suggests nothing of real value.  Much to my surprise about a month later, I received a brightly stamped World Vision envelope.  As I unfolded the orange-bordered stationery, I gazed at the signature line.  Pattraporn thanked me for the letter and the gifts sent her.  The tiny gesture of beads, ribbon and photos spoke volumes in her mind.

The young girl lived by the sea, and liked reading and movies.  While reading her return letter, I choked back a tear.OLYMPUS DIGITAL CAMERA

“I wish you could visit Thailand sometime, and me here.”

She ended he letter “I wish you and your family much happiness.  God Bless You.”

What a sweet, thoughtful child.

The recent correspondence from World Vision offered me the opportunity to sponsor another child.  I declined, channeling my efforts into another vision that hopefully will soon come to fruition.

Someone once said, “When one chapter ends in your life, another one begins.”

A photography book, about a special beach, in collaboration with my husband, is a personal project of mine and the next chapter of my life.  I’ve even rallied six local award-winning women authors to contribute to the book.

The monthly dollar amount previously sent to World Vision will now be channeled to the Gateway Chapter of the Leukemia and Lymphoma Society. After a meeting with Deb Kersting, Director, I made a pledge verbally (and in writing) to donate a portion of the proceeds to her organization after the book is published.

Some of you may know have come to know me by browsing the pages of my blog. I have low-grade lymphoma.

This book will be dedicated to many.  Those with physical ailments are first and foremost in my mind.

And if you get the chance, sponsor a World Vision child.  It’ll make a difference in your life.

Dear Kindred Spirit…

OLYMPUS DIGITAL CAMERAMay 22, 2013

Dear Kindred Spirit,

It’s not a coincidence that God brought me to you.

In April, I visited Sunset Beach for the first time.  I heard how Bird Island was a hidden gem!

That day I meandered down the beach, and a little boy threw a bucket of water on me. His actions were followed by an apology…..by his mother.

Sitting on her beach chair, she relaxed reading a book.

We conversed.

“First time here?”

“Yes.”

“You should check out the Kindred Spirit bench on Bird Island.  People from all over the world visit the bench and leave their thoughts and prayers in the mailbox’s journals.”

OLYMPUS DIGITAL CAMERAA salty tear trickled down my cheek.

Being here now is a peaceful feeling.  I’m sure it was meant to be.

As a writer, this spot moves my inner soul.

OLYMPUS DIGITAL CAMERAI’m here with new friends Jacqueline and Sandy who are so important to the Kindred Spirit.  Today, they hoisted a flag for Memorial Day and all the veterans we’ve lost over the years.  I call them the Kindred Spirit angels.  They retrieve the journals and send them back to their secret originator.

Jacqueline and Sandy with new flag

Jacqueline and Sandy with new flag

OLYMPUS DIGITAL CAMERAOLYMPUS DIGITAL CAMERAI’m sure I’ll be back.

There are so many people here, now, sharing the spirit.  Everyone is connected to each other.

I pray that my lymphoma never gets any worse than it is, my marriage to grow stronger, and God to watch over my ‘child’ animals, family and friends.

So long for now Kindred Spirit,

Sheree Nielsen

Missouri

Jackie and Sandy with Max who hoisted the flag Memorial Day 2012.

Jackie and Sandy with Max who hoisted the flag Memorial Day 2012.

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