- The Myeloma Beacon - https://myelomabeacon.org -

Myeloma Mom: Thank You, Mr. Brokaw

By: Karen Crowley; Published: May 26, 2015 @ 6:02 pm | Comments Disabled

I knew nothing about multiple myeloma until I’d been diagnosed with it.

I’d never even heard of it. Nobody I knew had ever heard of it. I certainly had never heard of another person who’d been diagnosed with it. I was alone and scared, frantically Googling to find out more.

Over the years, I’ve frequently needed to explain the disease to people and to correct those who confuse myeloma with melanoma. I’m sure this is a common experience for most of us who have this relatively uncommon disease.

Over the past couple of weeks, however, our little-known disease has been suddenly pushed into the spot­light. It’s been the subject of an hour of prime-time television, magazine articles, and interviews on NPR and various TV shows. These days, you can walk into Barnes and Noble and find a book about multiple myeloma prominently displayed.

All of this is thanks to journalist Tom Brokaw, who was diagnosed with multiple myeloma in August 2013. He’s written a book about his diagnosis called "A Lucky Life Interrupted," and he has done multiple interviews as well as an hour-long episode of Dateline in conjunction with the book’s release.

I wrote another column about Tom Brokaw in February 2014, back when his diagnosis first became public. I’ve always been a big fan, especially since Tom Brokaw and I are both graduates of the University of South Dakota. Back in 2014, Brokaw wasn’t saying much about myeloma; he had asked to keep his condition a private matter.

Many myeloma patients were frustrated with him. They wanted him to speak out and raise aware­ness. I understood his need for privacy, but I was hopeful he would become more comfortable going public in time.

Now I feel Tom Brokaw has come through for all of us in a big way.

I went to Barnes and Noble the day "A Lucky Life Interrupted" was released and read it immediately. Through the pages of the book, Brokaw does a good job conveying the seriousness of the disease while still re­main­ing optimistic.

Tom Brokaw, of course, is not a typical myeloma patient. I don’t think too many of us rush from our chemo appointments to appear on the Today show, travel to France to interview D-Day veterans, or show up at the White House to receive the Presidential Medal of Freedom. Most of us aren’t sharing stories about how we covered the fall of the Berlin Wall or interviewed Nelson Mandela.

When Tom Brokaw writes about his experiences with myeloma, however, I think all of us can relate.

Brokaw writes that he was diagnosed at the Mayo Clinic after suffering from a nagging backache for months. He admits he wasn’t always a model patient; he went fly-fishing in Montana just days after his diagnosis and ended up in “a pretzel of pain.” Soon he was prone on a stretcher, floating in and out of consciousness, riding in an ambulance, and then taking an emergency flight back to the Mayo Clinic.

He describes many issues that will be familiar to myeloma patients: Suffering the side effects of Revlimid [1] (lena­lido­mide), Velcade [2] (bor­tez­omib), and dexa­meth­a­sone [3] (Decadron). Feeling nervous before meeting with a doctor before test results. Making the decision about whether to have a stem cell transplant (he chose not to have one.)

He also writes about how his disease affected his wife, his daughters, and his grandchildren. He mourns the loss of an active, athletic lifestyle due to pain and fatigue.

And most myeloma patients will completely understand his feelings about the way the disease seemed to take over his life.

“Cancer becomes the scrim through which all of life is viewed,” he writes. “I hoped that as time passed I would be able to raise the cancer shade and allow more light into my daily life. Until then it is CANCER EVERY WAKING MOMENT and the realization that it will be with me until the end, by whatever means.”

Tom Brokaw is just one myeloma patient with one story, out there in a sea of thousands of us. His story, how­ever, is the most visible one. I’m hopeful that his book, interviews, and other publicity will raise awareness of the disease, bringing new interest and funding for research. Most important, I’m hopeful that newly diagnosed patients won’t feel quite so alone with an unknown disease.

Good luck to you, Mr. Brokaw. And thank you.

───────────────── ♦ ─────────────────

Editor's Note: There is an extensive Beacon forum thread [4] about Tom Brokaw's myeloma diagnosis and treatment. The thread was started last February and now includes Beacon reader com­ments on the news as well as links to the many recent television and radio interviews. In addition, a separate forum thread has been started about Tom Brokaw's book [5].

Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here [6].

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/2015/05/26/myeloma-mom-thank-you-mr-brokaw/

URLs in this post:

[1] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[2] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade

[3] dexa­meth­a­sone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[4] Beacon forum thread: https://myelomabeacon.org/forum/tom-brokaw-multiple-myeloma-t2865.html

[5] about Tom Brokaw's book: https://myelomabeacon.org/forum/tom-brokaw-a-lucky-life-interrupted-t5510.html

[6] here: https://myelomabeacon.org/author/karen-crowley/

Copyright © The Beacon Foundation for Health. All rights reserved.