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!

DSC_0399 ringing the bell crop

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

The People You Meet on the Street

Living on three acres for the last 17 years, Halloween night brings zero trick or treaters in our neighborhood. Quiet and secluded, it’s far from an inviting atmosphere for children seeking candy.

Restless and ready to do something different this Halloween, the dogs and I hopped in the car, and met the hubster at a quirky coffeehouse on historic Main Street in St. Charles. Picasso’s was the perfect spot to watch the kiddos in their cute Halloween costumes parade through the streets. There were original costumes for sure, but more interesting were the people we met on the street.

Young children, Millenial hipsters, and baby boomers with dogs stopped to greet our friendly canine fur babies, as we sat at the quaint café table sipping cappuccinos.

Bordeaux, our Bernese Mountain Dog/Aussie mix, whined as a beautiful Spaniel came into view, with its owners. Our mini Aussie, Sabrina, approached the dog cautiously. A few quick sniffs of the dark chocolate and cream Spaniel met with her approval.  Bordeaux was more than happy to lock snouts with the pooch in an all-out sniff-off.

Holly and Tom, the dog’s owners, pulled up a couple chairs across the entrance to Picasso’s to chat with us. A lively conversation ensued, initially centering around the topic of dogs.

Their Spaniel, Jasper, was included in many of their outings, since they were empty-nesters. I shared with the couple, we weren’t so lucky to have children, but the dogs and cats were our spoiled-rotten kids.

We talked about a lot of things, and eventually the conversation lead to favorite vacations, and the perks I’ve come to enjoy writing for a travel magazine.

I expressed my love for Michigan, and they let me in on a secret about Seattle and the San Juan Islands. They mentioned I should visit Reno and Lake Tahoe, and I wouldn’t shut up about islands in the Caribbean.

I discovered they were florists, whose family had been in the business for more than 85 years. Turns out, we even know some of the same authors. Their greenhouse, Parkview Gardens, hosts an author event in September. They suggested I drop by the shop for a visit when I’m in the area.

Chatting for more than an hour…the conversation flowed naturally. Time passed quickly, and the sky morphed from yellow-orange to blue-violet. Lights entwined on nearby trees twinkled and shimmered on cobblestone streets.

Holly and Tom graciously acknowledged it was time for Jasper’s meds, and they should probably head home.

While my conversation was coming to a close with the couple, my husband was actively engaged in a talk with the male patron at the next table. Over coffee and a cigar, the man spoke about his third round of chemo — his battle with cancer. The hubster shared with the man, our friend Dave’s story – diagnosed with a rare form of cancer. With three months to live, three years ago, Dave beat cancer – a walking miracle. The man occasionally scribbled in his notebook as the two talked. Later, hubby learned he was a writer.

Part of talking is listening. If you listen, you’ll realize there’s more to the person on the street than meets the eye.

Sometimes I’m guilty of not listening. But I’m working on it.

So take the time to listen to people’s stories. From their words and stories, you might just find off-the-beaten places to explore, like funky coffeehouses or restaurants, and their love of animals.

Who knows, you may find a deeper connection with this person, and learn about their quest to stay alive.

“Please be a traveler, not a tourist. Try new things, meet new people, and look beyond what’s right in front of you. Those are the keys to understanding this amazing world we live in.” 

Andrew Zimmern

Some people I’ve met on the street….

Jean Cruguet, Triple Crown/Kentucky Derby Winner, jockey for Seattle Slew.Met in Lexington, KY

DSC_0567 Jean Crugeut and me copyr

Lukas, a sand castle builder. Met in Sunset Beach, NC

DSCN0848 Lukas and sandcastle

Skully, an Australian vet, who walks in support of the “Run for the Wall” event originating in Rancho Cucamonga, California, ending in DC. Met in Wentzville, MO

DSC_1128 skully copyright

 

 

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

 

 

 

Chance Meeting?

Recently, I attended a local networking group meeting on Thursday.   A year had passed since my first visit to observe the group.

Call it intuition or a gut feeling, but I sensed a palpable reason drawing me to the meeting.

I arrived late and took a seat. I noticed the group had grown.  I was impressed.

Each member commanded the floor and spoke of business referrals.

As the meeting ended, it took on a decidedly personal feel.  One gentlemen offered free beverages at his diner and others talked about local fundraisers.

Although my reason for attending had been to acquire information about the group, network and market myself – I felt a deeper connection to one woman who spoke about her uncle recently diagnosed with an invasive cancer.  She asked if anyone had information on this subject to please talk to her before she left the meeting.

Coincidentally, my cousin Alan was struggling through this same issue with his girlfiend.  Diagnosed a few months ago, she was currently undergoing chemotherapy.

After the meeting, I approached her.  (We’ll call her Sarah).

I introduced myself again, and suggested she get in touch with my cousin.  I remembered Alan’s number was saved on my cell phone.

“I’ll just give him a quick call.”

As I dialed Alan’s number, I silently prayed for solace and comfort for Sarah.

“Hello,” a soothing voice answered.

“Hey Alan, it’s your cousin, Sheree.”

“I thought it might be you.  What’s up?”

I explained my reason for the call, and Alan requested “I put her on the phone.”

Sarah spoke with him for more than twenty minutes, jotting information on her notepad.  During this time, I occupied my mind studying the beautiful paintings, photography and watercolors scattered about the meeting room wall, and examining my new business cards.

Normally, I’m very impatient waiting for someone, but today my patience came from a higher source.

After the conversation, Sarah handed the phone back to me.  I bid Alan goodbye, and thanked him for chatting with her.

With a smile of relief on Sarah’s face, she leaned forward and wrapped her arms around me.

“Alan said to give you a big hug.”

Sarah admitted her spirits were lifted by her conversation with Alan.

“He shouldn’t be alive,” she said, recounting numerous close calls of losing his life.  “He’s a fighter.  If it wasn’t for his faith, he wouldn’t have made it through.”

After I left the meeting room, I’d realized that my networking today resulted in the best referral I could have ever given – my cousin, Alan.  His words of encouragement allowed Sarah to handle shattering news with calmness and confidence.

And I am certain this connection wasn’t a coincidence.  It came through God’s grace and almighty power.