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Letters From Cancerland: Through Rose-Colored Glasses

By: April Nelson; Published: August 11, 2017 @ 5:24 pm | Comments Disabled

In The Wonderful Wizard of Oz, the first of the Oz series, any traveler to the Emerald City must put on a pair of green spectacles, which are then locked in place. These are required to shade one’s eyes from the brilliant green glow.

In Cancerland, the color of the glasses is rose.

After a holiday from treatment of almost two months – longer than my myeloma specialist wanted, but shorter than Tim, my primary oncologist, wanted – I resumed treatment in mid July.

My new treatment regimen is Darzalex (daratumumab). The pre­scribed course is an in­fusion once a week for eight weeks, then once every other week for 16 weeks, then once a month there­after. Out of the gate, I am taking it straight, with dexa­metha­sone (Decadron) and Benadryl (diphen­hydra­mine), also by infusion, as the pre-meds.

Knowing nothing about Darzalex, I prepped for the start of treatment by reading fellow Myeloma Beacon columnist Maureen Nuckols’s columns [1]. Thank good­ness for Maureen sharing her observations! I carried her re­flections, along with the caveats that the initial session can be “rugged,” to my initial session.

Rugged? Did you say rugged?

I knew and had been counseled by nurses and oncologists that the initial treatment might produce a bevy of side reactions. That's why it is given very slowly in the first session. What none of us (least of all me, be­cause I tend not to react to drugs) expected was for my body to react very strongly to the Darzalex.

Nausea? I threw up so hard and so fast that I broke veins in the left side of my face, although I did not know that for another day. As a result of the massive hematoma, I walked around for two weeks looking like some­one coldcocked me.

Rash? The skin around my eyes swelled and turned bright red.

Respiratory? My nasal passage totally shut down, and my throat started to close too.

My reactions were so extreme that Tim came hurrying in to consult with the nurses, talk with me and my husband, Warren, and shut down treatment until they could get me stable. I had to come back the next day to finish the initial treatment.

The second “first day,” and the treatments since then, have all gone off without a hitch.

Before starting Week 2, I had a brief appointment with Tim at his insistence. He stopped in the doorway of the examining room, staring at the still prominent bruise on my face. I explained what he was looking at, he asked a few questions, then dropped onto a stool and buried his face in his hands for a few seconds. When he looked up, he was a little moist around the eyes. In the almost 13 years we have been together, I have seen that reaction only one other time, when it became apparent that my stem cell transplants had failed within a few months.

Tim then scanned that morning’s lab results and lit up. After cautioning me that what he was about to say had no statistical significance, he noted that my hemoglobin was 11.2.

11.2? 11.2? That’s the best reading, finally breaking out of the low and mid 10s, that I have had in years.

“Looking at this through rose-colored glasses, I’d say this is encouraging,” he announced.

I twitted him. Rose-colored glasses?

“As oncologists, we have to view our patients through rose-colored glasses,” Tim explained. “Otherwise, you’d be one miserable, cynical, burnt-out oncologist.”

I’ve thought about that comment a lot since then. In Emerald City, they wear green glasses because the glare is so bright. In Cancerland, they wear rose-colored ones to amplify the smallest of victories. Tim had his on when he saw the hemoglobin turn up for the first time in too long to remember. The amazing nurses in Infusion wear them when they walk by and smile when they see I am not reacting to the Darzalex.

On a regular basis, our providers sit across from us, see the glimmers, and hand the spectacles over to us. “Here. Look here. See that?”

It is the faint shimmer of hope.

April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here [2].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2017/08/11/letters-from-cancerland-through-rose-colored-glasses/

URLs in this post:

[1] Maureen Nuckols’s columns: https://myelomabeacon.org/author/maureen-nuckols/

[2] here: https://myelomabeacon.org/author/april-nelson/

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