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

A Life Changer – Brunswick Christian Recovery Center – Teaching individuals a new way to live

When my editor at South Brunswick Magazine, Allison, asked me to write a story on a nonprofit – Brunswick Christian Recovery Center, I was a little anxious. It was important I convey the center’s message of hope. After talking to Joshua Torbich, the director, and hearing compassion in his voice, and love of the work he was doing, not just for the community, but for the men of Brunswick Christian Recovery Center, all my anxiety was laid to rest.

Here’s the three-page story that was published in South Brunswick last week. I hope you enjoy the message, as much as I enjoyed writing the story.

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S Brunswick - Life Changer BCRC S Nielsen pg 80

S Brunswick - Life Changer BCRC S Nielsen pg 81

The Storms in our Life

(This is are repost from last summer.)

Sometimes even though you may have best interests at heart for a loved one or a pet, situations may still be stressful in your household.

These episodes of conflict, or ‘storms’ were described by our pastor, Tim, at O’Fallon Christian Church. These times often seem hopeless, neverending, physically and mentally draining.

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I am currently going through a ‘storm’.

For the past three months our home has been divided – structurally and DSC_0956 Adeline and her babies copyremotionally.

It all started with a female stray cat visiting our back deck in March. We rescued and adopted her before knowing she was pregnant.

Momma Adeline delivered six precious kitten babies, and we witnessed the miracle of birth. It was simply amazing!

Our sixteen year old cat Midnight doesn’t care for Adeline and makes it know by vocalizing in the form of hisses and pig snorts. Adeline, being protective of her babies (even though Midnight doesn’t come in contact with them) takes Midnight’s vocalization as a threat — a brewing storm. This makes life stressful. I’m always trying to make peace between the two– trying to get them to see things the same way.

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Out of the six kittens, four have gone to lovely homes. Two are left – Elvis, a beautiful boy with long body, tall legs, big paws, black with striped head and haunches (manx and black cat mix); and Ireland, a feisty little striped girl (manx) that makes me laugh, loves to play, and gives kisses.

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Adeline is separated from the kittens now, so they can thrive on their own without momma’s milk. At nine weeks, they are eating dry food (which they love), drinking water, and being silly little felines. The kittens enjoy running, leaping, and playing in the master bathroom and master bedroom.

At nighttime, Adeline has the run of the basement, and Midnight is on the main floor. During the day, they live together with the dogs, sometimes peacefully, sometimes not so peacefully. A house often divided indeed – by rooms and by emotions.

No sure how much longer I can live like this. Hubby says it will all work out in the end.

On top of all this commotion, I’m trying to work on my writing. There are good days, and there are unproductive days. On the unproductive ‘writing’ days, I usually clean the house, run errands, fix things that need to be fixed. You get the idea.

Add to that, the trouble my husband has with cat dander. Lately, he has been retreating to the solice of the guest bedroom with Red Dog – typically a cat-free zone.

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Our Australian Shepherd, unsure where to sleep, usually follows me to the bedroom, after I tuck the kittens in at night on their favorite cozy bench in the bathroom.

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“The Culprit”

Dogs are such gentle souls. With the storms brewing in our household, comes frustration, lost tempers, and sobbing. Let me just say, the dogs have adapted the best. Things change at a minute’s notice. The goofy pooches are always eager to lick away your tears.

Why can’t humans be like dogs with their “Oh, well attitude”? Nothing seems to bother them. Seems like dogs just go with the flow, don’t they?

I’ve experienced a pretty significant storm in my life – Tropical Storm Jerry – back in the early 1990’s. During a Blackbeard’s cruise off the coast of Bimini, Bahamas, Jerry struck, with twenty foot wind swells pummeling our sailboat of 20 scuba divers. The torrential downpour forced us to don our raingear purchased on Bimini. After 90 minutes on deck in the midst of bitterly cold rain and unforgiving ocean, we attempted singing show tunes. When that didn’t work, we retreated to the warmth of the galley and salon, conversing, smiling, laughing, and trying to remain positive until the storm subsided, all the while the boat was taking on water.

I wish I could tackle all of ‘life storms’ in the same way. Sometimes I forget my favorite Bible verse Philippians 4:6 which says, “Don’t worry about anything, but pray about everything”.

As I write this today, I’ve decided to forego my usual morning breakfast ritual of raspberries, oatmeal, and toast accompanied by a dose of Gayle King, Charlie Rose and Nora O’Donnell from CBS This Morning. Instead, I’ve spent my time reflecting on life, and reading Coffee with God by Sarah Arthur – 365 Devotions to Perk Up Your Day.

Because sometimes…. many times, you just need a dose of God and a good cup of coffee to start your day, to get you through those ‘storms’ in life.

And the prayers of friends, family, and even strangers doesn’t hurt either…

I hope the ‘storms’ in your life subside.

Peace out and love,

Xoxoxox

 

Sheree

When a White Dove Crosses Your Path

Since this seems to be one of my popular blog posts, I’m sharing with you again.

Sheree's Warm Fuzzies

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After a wonderful afternoon strolling Main Street St. Charles with hubby, Russell, and our two canine children, we made the trek home in our SUV on I-70.  Russell cast his eyes to the sky and a perfect white dove flew overhead.  The dove, immediately in our line of sight, crossed paths at the specific moment we were traveling down the highway.

Coincidence.  Maybe?  Or Maybe not.

This stirred up memories of a service at O’Fallon Christian Church many years ago.  I’d been searching for a church for several months – one my husband and I could attend together.  The service was uplifting with joyful music.  Listening to the song, “I Surrender”, the Holy Spirit filled me with an unexplained emotion and vulnerability.  I was baptized shortly after.

Over the last few days, a series of events happened – my husband lost his aunt due to a heart attack, it was…

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The Grateful Jar 2016 – What are you grateful for?

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The last evening of 2016, I spent with long time friends, Tina and Mike, and my husband Russell. After a savory dinner and some music, we headed to our favorite coffeehouse in Cottleville, Van Buskirk’s Chocolate Bar for some conversation and drinks.

The mood was festive, with millenials and hipsters hanging out at the bar. Silver ribbons and star decorations hung from the rafters. Familiar music from bands of the 60’s, 70’s, and 80’s played in the background. Lisa, the cute bartender, ever so stylish in her yarn hat, handed out sparkling glasses of champagne to the fifteen of us gathered that night to ring in the New Year.

I’m sure the four of us were the oldest people there. No worries. Tina and I had fun dancing and singing; the guys had fun laughing at our antics.

As Mike and Russell conversed, Tina and I shared how 2016 was like a roller coaster with its ups and downs. I mentioned to her, how I’d just love to have a day of solitude.

I planned on opening the Grateful Jar after I returned home, a tradition I’d started last year on January 1, after seeing a facebook or twitter post, but for some reason, it wasn’t the right time.

I saved the Grateful Jar for today. A day where the sun was brilliant in the powder blue sky, and snow was packed hard in the  driveway. A lazy Saturday morning — kittens talking to birds outside, and the dogs sacked out in the living room with the hubster.

The Grateful Jar’s purpose – write down good things that happen to you on paper and place them in the jar. They could be surprise gifts, accomplished goals, the beauty of nature, LOL moments or even daily blessings. Then on December 31, open the jar at midnight and read all the amazing things that happened that year.

I opened the new and improved “Count Your Blessings” jar purchased at a home decor store.

– January 4 – Grateful for my husband and three beautiful fur babies.

– Grateful for my long time friend, Tina, who reminds me of the sister I never had.

– Sleeping in my own bed.

– Thankful for long winter walks in the snow with the dogs, and mornings of discovery in January.

– January 27 – Thankful God takes away my anxiety just by reading his Word.

– January – Thankful for my fur baby wake-up crew – a black cat diva, a neurotic Australian Shepherd, and big ole goofy red dog.

– January 3 – Grateful to have a roof over my head.

– Thankful for a wonderful birthday weekend.

-February 2 – Caramel cappuccinos at Crooked Tree Coffeehouse

-February 3 – Extra Dark Cacao Chocolate with sea salt at Kakao Chocolate in Maplewood.

-February 4 – Grateful for cotton candy pink clouds in the shapes of horses and dragons.

-February 4 – Grateful for sacked out naps with dogs, hubby and kitty in the comfort of my sofa on cold winter days.

-Beautiful landscapes of fields, farms, and barns.

-February 3 – Grateful for the shooting star I witnessed in the magnificent night sky at 12:22 a.m., and the incredible night sky blanketed by stars!

-March 3 – Glorious day of a purple sky sunset against silhouetted trees!

-March 14 – Thankful Adeline, the manx cat, showed up on our deck. Thankful we didn’t leave a pregnant momma out in the cold to fend for herself.

-Grateful for Adeline and the delivery of six healthy kitten babies on April 11. Praying for her health and well being.

-Grateful God listens to my prayers – April 12.

-Grateful Adeline’s kittens Patric, Dora, Sweet Tea, Elvis, Ireland and Skye make me laugh every day biting my legs, jumping on my back, crawling up my nightgown, and jumping in Russell’s underwear. (six weeks old)

-Thankful for a house full of love – kitties and kittens.

-Grateful Adeline’s kittens have gone to friends and church family.

-Russell snuck this one in – Grateful for Sheree’s need to be productive.

-Some days I’m just grateful for everything! (March 28) Smiley face

-Grateful my lymphoma is in check.

-Iced cappucinnos and cake pops from Starbucks.

-Grateful for outdoor showers at beach houses in Sunset Beach and the way the cool air feels on my nubile skin.

-May 24 – Grateful for the beautiful orchid I’ve kept alive for more than 1.5 years.

-Dogs riding in cars with their heads hanging out the windows, and ears flapping in the wind.

-My husband gently washing my back in the shower.

-The hummingbird on the purple helicopter plant (Cleome) on the back deck.

-The sound of the 12:30 a.m. train whistling through my open bedroom window.

-My big red dog, Bordeaux, inquisitively memorizing our car trip to the beach.

-Conversations with strangers on planes that last for 2 hours. (Strangers no more)

-When Ireland, our kitten, carries that big yellow artificial Gerber Daisy in her mouth. My inability to catch her.

-My friend Abby snuck these in. Love you Abby!

I am grateful for Sheree and Russ sharing their fur babies with me. Love, Abby

I am grateful for Midnight, Adeline, Elvis and Ireland wait for me to come in at the door. (Three hearts)

I am grateful for my very good friends Sheree and Russell !! xoxo, (smiley face with exclamation eyes) Abby

-Toes dug in chilly Michigan sand, and warm up jackets.

-God’s grace. (heart)

-Backyard bonfires with friends and s’mores with dark chocolate and Reese’s peanut butter cups.

My husband snuck this one in.

-“My wife’s big boobs.”

-Grateful to console friends that need to talk.

-Grateful for Katie Eichhorn’s ‘wedding of the century’ held at Bissinger Chocolate Factory, with all the cousins.

-Grateful for five vacations this year.

-Blessed that Wildlife Rescue Center released 12 baby squirrels on our property.

-Grateful the pain in my breast was nothing.

-Grateful to ring in the New Year with friends, Mike and Tina, and the hubster, Russell.

Alot of people on facebook said that 2016 was a bad year. Well, it wasn’t for me. Sure there were some low periods. Even unproductive times. With all the things that bring a smile to my face, make me laugh, and gave me warm fuzzies, I think it was a pretty good year.

And Lord knows, I love all that chocolate and coffee stimulating my brain!

Isn’t that what it’s all about? Feeling, seeing, touching, hearing, smelling, talking, loving, building relationships…

However your 2016 played out, remember there’s always this year to change things up.

Hope 2017 is a good one for you.

Peace Out and Love,

Sheree

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