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

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

 

 

 

 

 

 

Shifts – Women’s Growth Through Change

Pageflex Persona [document: PRS0000038_00066]I received a package over the Christmas holidays – my two contributor copies of the women’s anthology, SHIFTS – An Anthology of Women’s Growth Through Change.

The book’s editors, Trina Sotira and Michelle Duster, asked me to submit photographs for the front and back cover.

I selected scenes that reminded me of shifts in my life – the raw beauty of the ocean, flora, fauna or any other photography that came to mind. Then I narrowed it down to my favorites. One of which was the The Glass Window Bridge – an unforgettable natural phenom I will not forget.

The Glass Window Bridge situated along Queen’s Highway near Gregorytown, is Eleuthera’s thinnest stretch of land – a mere 30 feet across. The man-made bridge replaced the naturally formed bridge of rock destroyed by a hurricane. Vistas of the rock formations are breathtaking, as well as the contrast between the aquamarine waters of the Caribbean and the indigo blue color of the Atlantic Ocean.

Over the weekend, I started reading SHIFTS, and was prompted to send an email to Trina. Bits and pieces too personal were left out. Here’s the edited email.
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Trina,

Just wanted to tell you how much your book has touched me.

This morning I woke up with my heart in my throat. My first thought was to reach for my bible, which usually calms me down.

For whatever reason, I didn’t reach for my bible. I opened up Shifts, and read three essays from the Self-Worth section – yours, The Slope, and the Last Christmas.

Just reading these essays, calmed me down and took away the anxiety. A couple of women came to mind that probably would love the book, too.

I guess as women we all go through trying times in our life. I just love the book. I know I promised to blog about it, but haven’t been really motivated these weeks to accomplish writerly things.

Sheree
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And just like the contrast of the color of water near The Glass Window Bridge, and the ever changing tides, this books reminds me of the challenges and choices women through on their journey doing ‘life’.

I urge you, if you haven’t picked up SHIFTS, buy it.