Myeloma Mom: Thank You, Mr. Brokaw
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 (lenalidomide), Velcade (bortezomib), and dexamethasone (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.
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Editor's Note: There is an extensive Beacon forum thread 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.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks Karen for the thoughtful column about Tom Brokaw. I have the book on hold at our library, and will read it with interest, no doubt. You have given a really good book review!
i did know people who had multiple myeloma before my dx, and all I can really say is that things are better now than they were 6 - 10 years ago. It is no longer a foregone conclusion that the survival rate is really low. Part of my explaining about the disease to others has been to tell them that there are better treatments now for some of us, and that is prolonging our lives too. I hope that Mr. Brokaw experiences success with all of his treatments and gets to a 'new normal' too.
Great article, Karen. I agree wholeheartedly! I found his interviews to be honest and informative and I look forward to reading his book.
Great article !
I found the dateline show very informative, recalling the severe back pain myself, mine not has bad as his but still bad enough.
The stress on yourself and the family in the beginning, waiting for the blood work results, the side effects from the ACT stem cell transplant hoping to improve and get healthy.
Karen: First, terrific reaction to all of this sudden publicity. Although I have not yet read the book, I did find Mr. Brokaw's account of the onset and ongoing struggle with MM very genuine and authentic. His journey started about a year after my own dx, also with an unusually painful back after many years of sporadic spasms following a rollover auto accident in the 70's. Despite that long experience, in the summer of 2012 I had the worst pain I have ever felt. EVER. Fortunately, I had a primary Doctor who understood quickly (within 2 weeks) that what I was experiencing not my usual spasms. He suggested pics/MRI's and a blood test for something I "probably don't have, but let's just be sure". Of course, the thing I probably didn't have was MM, and of course the initial test came back showing I might. Then weeks later, my T9 compression fracture became a collapsed T9 and then everybody seemed convinced.
The slow realization by coworkers, friends, and family that Brokaw described was spot on. The slow dawning even by he that this was not your normal back thing (the fishing and other stories)was something that I recognized in spirit if not in related incident of my own. There were little things that I suspected I shouldn't be doing and paid for quickly in renewed pain. Not fishing, not an air ambulance in result, but just as much denial about what a vexing, awful thing this was that was happening.
The story and his continued ability to be heard by a much larger audience should help all of us who struggle with this little-known disease. Thank You, Tom.
It would have been very helpful if Mr. Brokaw wrote what KIND of MM he has -- IgG? IgA? any chromosomal abnormalities? so that people can understand how differently MM affects patients. Otherwise, readers may think that his MM & bone involvement strikes everyone diagnosed. I had only anemia at dx. Suzanne Gay
I read the book last weekend. As can be expected the book goes into more detail and covers more events than the NBC Dateline episode. He also reminisces a bit about some of the highlights and treasured memories of his career as journalist. A little bit of a tangent and I felt that he was just barely dipping into the waters of what could be a much larger and separate book by itself. He also described encounters in his life with people who were facing challenges much more severe that he has faced that gives him perspective about his current illness. If you want to know more about his thought process and decision making regarding his treatment than was presented in the Dateline episode you can find more on this in the book. Being a journalist he also offers some candid commentary on our health care system from this experience and some research he has done, both the good and the bad. It is worth reading if you have myeloma even if you saw the Dateline episode.
Tom’s love of the outdoor life and sharing it with friends resonated with me, more than his experiences as a journalist. He is a cyclist too. My GF sister moved to Ketchum Idaho last year and I was planning a trip up there and to Coeur d’Alene this June. I can see why people who have earned a few doubloons in their life like to spend them buying a ranch in Montana. My GF will be doing Ironman Coeur d’Alene and after that we had plans to go to Glacier National Park and spend time in Ketchum doing outdoor stuff, hike, mountain bike, skeet shoot, fishing, rafting, and maybe even paragliding. Now that it appears I may be starting Kyprolis and dexamethasone soon those plans are severely curtailed or may not happen at all for me. I really appreciate the convenience of being able to take pills for treatment and not have to do an IV and those days may be over for me. I suspect this may have been a factor in Tom’s decision to start treatment with just Revlimid and not Velcade or Kyprolis. Being on IV twice a week would put a severe restriction on his work, travels etc and I would think make it very difficult to keep his myeloma condition private when he wanted to.
Beautifully written, Karen.
Thank you for including Tom Brokaw's insightful and powerful comment: “Cancer becomes the scrim through which all of life is viewed. 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."
So true, so true.
Lovey
Hello Karen:
Very well written, article. I agree with your sentiment. Tom Brokaw has developed a style in the way he writes books, and does his various television shows. He makes certain statements not by making overt statements, but by constructing a story (telling the "news") and asking questions for others to answer. He has done this in his book "The Greatest Generation", which I have read several years ago. He raised awareness for WW II veterans (a worthy cause), contributed to public recognition, long overdue. He spoke before Congress to lobby on behalf of veterans needs, and generally worked to move the public opinion towards greater respect of our WW II war veterans.
Even though he makes no more than a small number of statements as a strong cancer/myeloma advocate, he is being a strong advocate for cancer/myeloma in a manner similar to the WWII issue. In a low key way, I have read in other media channels where he has already started to contribute to cancer and myeloma related support events. In his book, he has raised awareness of insurance issues, the role of the caregiver, quality of health care, and clinical research (among other issues, and while using his life story as a backdrop).
I also think we need to give him credit for knowing his job well. When communicating to the mass audience, the country overall, there are certain details that make most people's eyes glaze over, and so if you are a myeloma insider, his level of detail might seem somewhat weak to you at first blush. That comes with the territory that Tom operates in, and is unavoidable considering his target audience.
Thanks for recognizing this in the headline of the Beacon, Karen. Great job.
Thank you Karen and all other columnists, beacon staff and yes thank you Mr Brokaw. I expect a journalist to step up. He or she writes about life changing events, he or she is already a public figure and they used events in others people's life's to write about. In case something hapens in their life, it feels normal for me that they come to terms with it and write about it. As for all other precious mm-people who speak out, chapeau. It is not your profession but you feel the need to be a beacon for others. Thank you and travel the mm road save.r
I bought the book. And enjoyed it more than I thought I would. My mm experience was the same as his. Could not walk. I still don't know why that was.
After watching the special, the one thing that struck me is how Mr. Brokaw took all those overseas trips for work. The evening of and the day after Velcade, all I want is a bed. I have learned that, if I force myself, I can get up and walk around, but do not see how work would be possible. I am recovering from removal of my T3 and laminectomy of T1 to T5, and that adds to my limitations. My surgeon keeps telling me I am one tough hombre, but after watching Tom Brokaw, I thought to myself, "No, that is one tough hombre."
Wonderful....Well written .... Suffice to say Karen, and Mr. Brokaw, "Patient Advocacy", "Public Forums" communicating the value, and absolute necessity of "rallying", both a "first class" medical community, family, and spiritual support -- while fighting any serious life situation -- like cancer -- is absolutely essential.
Blessings to you all, and to Mr. Brokaw for sharing his personal medical
documentary on "Dateline". It will bring "vital" information to so many!
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