"Let the doctors do their job, you do everything you can to improve the quality of the time you have left, and that of your family and friends. That is really all that's left to do, and those who are buried in numbers and clinical studies are really missing out."
Your comment above is what Tom Brokaw was in essence saying in his book. His "lucky life" has been dramatically interrupted. He has decided since his diagnosis to concentrate on family and close friends. Those that are on the fringes he no longer has time for. He has been given a shot of reality. He talks about his collegue, Garrit Utley who died of cancer last year at the age of 74. A contemporary both in time and in profession. He has hope that the remission will last long enough that he dies of something else but he also knows that it may not last. He realizes and that in any event he is closer now to the end. The closeness of family and true friends spending time with them is what he really treasures now. It exposed him to his his own mortality and really brought it home. That is what I got from his book. That is what I think we all experience in one way or another.
Forums
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Tom Brokaw diagnosed with multiple myeloma
Jack - I think you make some good points. The disease I have does not define my life and I don't think I obsess about it. I don't talk about it to anyone unless they ask about my health. I have let my doctors guide my treatment and I have confidence in their knowledge and skill. At the same time, I think it behooves me to stay on top of what's going on with new treatments and such and to understand for myself (as much as I can) what the positives and negatives are with current treatments. One example: I was originally scheduled for a stem cell transplant in December of 2012. I did not particularly want to be in the hospital over the holidays and although my light chain and M-spike numbers had dropped via Revlimid induction therapy, they were just barely below 10% of what they'd been at the start of the induction and still well above normal. Therefore, I asked my doctor if we could put off the transplant and do one course of Velcade in the meantime. He thought it over and decided it wasn't a bad idea, so that's what we did. The single Velcade course put my light chains within normal limits for the first time since my diagnosis and dropped my M-spike to below the detectible level. So basically, this was a slight modification to the treatment plan based on a request that I made which was quite beneficial.
For me, there is another reason for keeping up with the latest research and treatment protocols, and that is that they give me great hope. At present, based on the numbers, myeloma must be considered an incurable disease. Many of us who have contracted it will die from it. The words "relapse is inevitable" are not heartening, to say the least. This whole thing can really be a bummer! But when I go through the research that is being done, the depth to which researchers are starting to understand the disease, the creative ways they're looking to attack it, the therapies that are at every stage from test tube to Phase III clinical trials, I start to feel like there's really some hope that some of us are going to see this thing knocked down to a chronically manageable and functionally cured disease. Will I be one of those folks? Maybe not. Maybe my disease comes back next month or next year. Maybe my specific version of myeloma will prove to be tougher than others. Maybe I get hit by a bus before one of these new treatments comes on line. The thing is, I am virtually positive that if one of my kids gets diagnosed with this disease in their 50's, she won't bat an eye. She'll take some pills or get a couple of infisions, and she'll be better. That makes me happy.
That's just me, though. I can see how my habit of reading up on research and therapies might just make things that much scarier and sad and difficult for someone else. We all have our ways of handling this and as long as we can cope to the point that we can enjoy our lives then any way of doing it is a good way.
For me, there is another reason for keeping up with the latest research and treatment protocols, and that is that they give me great hope. At present, based on the numbers, myeloma must be considered an incurable disease. Many of us who have contracted it will die from it. The words "relapse is inevitable" are not heartening, to say the least. This whole thing can really be a bummer! But when I go through the research that is being done, the depth to which researchers are starting to understand the disease, the creative ways they're looking to attack it, the therapies that are at every stage from test tube to Phase III clinical trials, I start to feel like there's really some hope that some of us are going to see this thing knocked down to a chronically manageable and functionally cured disease. Will I be one of those folks? Maybe not. Maybe my disease comes back next month or next year. Maybe my specific version of myeloma will prove to be tougher than others. Maybe I get hit by a bus before one of these new treatments comes on line. The thing is, I am virtually positive that if one of my kids gets diagnosed with this disease in their 50's, she won't bat an eye. She'll take some pills or get a couple of infisions, and she'll be better. That makes me happy.
That's just me, though. I can see how my habit of reading up on research and therapies might just make things that much scarier and sad and difficult for someone else. We all have our ways of handling this and as long as we can cope to the point that we can enjoy our lives then any way of doing it is a good way.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Tom Brokaw diagnosed with multiple myeloma
Hello,
I've been traveling, so I am a week or so late in replying. But I want to comment on Jack's posts.
Jack, I agree with you 100% about Tom Brokaw's use of the word, "Interrupted," in the title of his book. That word jumped out at me when I first heard about his book, and it bothered me too.
Having multiple myeloma is not a mere, temporary "interruption." It is a life-changer for those who are "lucky" enough to have it not quickly be a life-ender. (No pun intended re: another word in Brokaw's title.)
However, I think that unfortunate word choice is outweighed by the good that Brokaw's book and his Dateline show and other book promotion appearances have done to increase awareness of our disease.
The title of his book also surprised me for another reason - it is stunningly similar to a blog written for the New York Times by Suleika Jaouad entitled "Life, Interrupted." (http://well.blogs.nytimes.com/category/voices-2/life/).
Sulieka was diagnosed at age 22 in 2010 with Acute Myeloid Leukemia and Myelodysplastic Syndrome. In her blog she has chronicled her journey in dealing with her blood cancer. She is a marvelous writer! And she just happens to be the same age as my daughter.
I began reading her column in 2012 when I still had smoldering myeloma, but was seeing my myeloma numbers inevitably climb. While she has a different form of blood cancer and she is much younger than I am, her writing helped prepare me for what I would face when I began treatment in 2013.
"Interrupted" turns out to be a poor word choice for Suleika too because she came very close to dying during her treatment. And in her most recent column, from March of this year, she talks about how the whole experience of having cancer has changed her forever, something she had not entirely expected. (http://well.blogs.nytimes.com/2015/03/16/lost-in-transition-after-cancer/)
I highly recommend Suleika's blog. And especially her most recent column, which speaks to those of us in "remission," working to make sense of the new me.
Mike
I've been traveling, so I am a week or so late in replying. But I want to comment on Jack's posts.
Jack, I agree with you 100% about Tom Brokaw's use of the word, "Interrupted," in the title of his book. That word jumped out at me when I first heard about his book, and it bothered me too.
Having multiple myeloma is not a mere, temporary "interruption." It is a life-changer for those who are "lucky" enough to have it not quickly be a life-ender. (No pun intended re: another word in Brokaw's title.)
However, I think that unfortunate word choice is outweighed by the good that Brokaw's book and his Dateline show and other book promotion appearances have done to increase awareness of our disease.
The title of his book also surprised me for another reason - it is stunningly similar to a blog written for the New York Times by Suleika Jaouad entitled "Life, Interrupted." (http://well.blogs.nytimes.com/category/voices-2/life/).
Sulieka was diagnosed at age 22 in 2010 with Acute Myeloid Leukemia and Myelodysplastic Syndrome. In her blog she has chronicled her journey in dealing with her blood cancer. She is a marvelous writer! And she just happens to be the same age as my daughter.
I began reading her column in 2012 when I still had smoldering myeloma, but was seeing my myeloma numbers inevitably climb. While she has a different form of blood cancer and she is much younger than I am, her writing helped prepare me for what I would face when I began treatment in 2013.
"Interrupted" turns out to be a poor word choice for Suleika too because she came very close to dying during her treatment. And in her most recent column, from March of this year, she talks about how the whole experience of having cancer has changed her forever, something she had not entirely expected. (http://well.blogs.nytimes.com/2015/03/16/lost-in-transition-after-cancer/)
I highly recommend Suleika's blog. And especially her most recent column, which speaks to those of us in "remission," working to make sense of the new me.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Tom Brokaw diagnosed with multiple myeloma
When my daughter was diagnosed at age 32, her life was definitely more than interrupted. She has been on some form of treatment for all but 3 months of the 42 months she has had myeloma; this includes an SCT. She can not work full time, her social circle has diminished, and she cannot do many of the things she used to.
It is not only the patient's life that changes. My retirement started 6 months before her diagnosis; thank goodness I did retire or else I would not be able to be there for her. My husband was planning on retiring next year but that may be put on hold because of the financial expenses.
Nobody knows how long this journey will be but we will do it together but everyone's lives have been more than interrupted.
It is not only the patient's life that changes. My retirement started 6 months before her diagnosis; thank goodness I did retire or else I would not be able to be there for her. My husband was planning on retiring next year but that may be put on hold because of the financial expenses.
Nobody knows how long this journey will be but we will do it together but everyone's lives have been more than interrupted.
Re: Tom Brokaw diagnosed with multiple myeloma
I can see why some may see the word “interrupted” to be a poor choice of a word in the title of Tom’s book. For me it did not cause an emotional reaction. But to quote Jack’s response:
“What an insult to the memory of all those who have died at the hands of multiple myeloma and those who are dying from it now, like me! Brokaw's denial that multiple myeloma is terminal is not only wishful thinking, it's damaging and dangerous to the community, it stands mortality on its head, defies the odds and spits in the face of facts and figures.”
Isn’t that being a bit melodramatic? If someone is that spun up so easily, then many of the titles and content of the Beacon contributors would be equally or more or offensive and insensitive. Would they be as deserving of such a personal attack? Why single out Tom for such a blast? Did he even read the book before posting that? It is clear this has been as difficult for him as it has been for the rest of us. There certainly should be room for disagreement and discussion but it would be helpful to keep the discussion constructive and not personal.
“What an insult to the memory of all those who have died at the hands of multiple myeloma and those who are dying from it now, like me! Brokaw's denial that multiple myeloma is terminal is not only wishful thinking, it's damaging and dangerous to the community, it stands mortality on its head, defies the odds and spits in the face of facts and figures.”
Isn’t that being a bit melodramatic? If someone is that spun up so easily, then many of the titles and content of the Beacon contributors would be equally or more or offensive and insensitive. Would they be as deserving of such a personal attack? Why single out Tom for such a blast? Did he even read the book before posting that? It is clear this has been as difficult for him as it has been for the rest of us. There certainly should be room for disagreement and discussion but it would be helpful to keep the discussion constructive and not personal.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Tom Brokaw diagnosed with multiple myeloma
The word 'interrupted' didn't bother me, either. It is, in fact, a play on a rather strong meme that began with a book called 'Girl, interrupted"...the idea is that no matter how serious something is that blind sides us, it's a thing that happens, and shouldn't BECOME 'us."
Now we here are all either patients or caretakers; we are all very aware of just how big a life change getting diagnosed with this is. What makes anybody think that Mr. Brokaw has to be so much...what...better at it than any of us?
Why does he have to go by the standards of anybody but himself? he wrote a book that some of you have a problem with...the TITLE...for crying out loud.
I remember a bit ago, when it first came out that he had this, that some here were extremely critical of him; he should have been doing more, or less, or raising more money, or going somewhere else...as if this disease that circumscribes OUR lives in so many different ways should somehow have left him alone except for the words describing the diagnosis.
Yes, it's an interruption. It really is. It's an interruption like Hurricane Katrina was an interruption to my birthday week, like the World Trade Center was an interruption to a lovely fall morning, like the Challenger explosion was an interruption to a routine shuttle flight. Disastrous interruptions, but interruptions none the less.
I can tell you one thing: Mr. Brokaw's 'interruption' made him a LOT sicker than I am...and I'm in the 'high risk' category. He may well outlive me.
Or not.
Whatever....he has the right to deal with it in anyway he wants to, and has no responsibility at all to deal with it the way any of us want him to. He doesn't owe US anything at all, and his celebrity status doesn't mean that we have the right to criticize him for the manner in which he does deal with it, or the title of his book, or the attitude he takes.
As for me, well....it IS an 'interruption.' It's a doozy. But I'm in grad school anyway. He wrote a book anyway. We're all alive anyway. If our lives aren't what we envisioned from 'before,' they are what they are now, and we have the days to do stuff in NOW. So we all know, a little better, what may kill us, besides all the other things everybody else faces, like getting run over by semi's full of chocolate bunnies.
. So what?
So let's not worry about how someone else deals with his, and let's worry about how we deal with ours.
Now we here are all either patients or caretakers; we are all very aware of just how big a life change getting diagnosed with this is. What makes anybody think that Mr. Brokaw has to be so much...what...better at it than any of us?
Why does he have to go by the standards of anybody but himself? he wrote a book that some of you have a problem with...the TITLE...for crying out loud.
I remember a bit ago, when it first came out that he had this, that some here were extremely critical of him; he should have been doing more, or less, or raising more money, or going somewhere else...as if this disease that circumscribes OUR lives in so many different ways should somehow have left him alone except for the words describing the diagnosis.
Yes, it's an interruption. It really is. It's an interruption like Hurricane Katrina was an interruption to my birthday week, like the World Trade Center was an interruption to a lovely fall morning, like the Challenger explosion was an interruption to a routine shuttle flight. Disastrous interruptions, but interruptions none the less.
I can tell you one thing: Mr. Brokaw's 'interruption' made him a LOT sicker than I am...and I'm in the 'high risk' category. He may well outlive me.
Or not.
Whatever....he has the right to deal with it in anyway he wants to, and has no responsibility at all to deal with it the way any of us want him to. He doesn't owe US anything at all, and his celebrity status doesn't mean that we have the right to criticize him for the manner in which he does deal with it, or the title of his book, or the attitude he takes.
As for me, well....it IS an 'interruption.' It's a doozy. But I'm in grad school anyway. He wrote a book anyway. We're all alive anyway. If our lives aren't what we envisioned from 'before,' they are what they are now, and we have the days to do stuff in NOW. So we all know, a little better, what may kill us, besides all the other things everybody else faces, like getting run over by semi's full of chocolate bunnies.
. So what?
So let's not worry about how someone else deals with his, and let's worry about how we deal with ours.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Tom Brokaw diagnosed with multiple myeloma
Please, let us move on to more substantive and pertinent topics and/or move this thread about "Tom Brokaw's book" somewhere else.
Re: Tom Brokaw diagnosed with multiple myeloma
I actually like this dialogue. There are some very well written, thoughtful posts.
Interrupted is probably more appropriate for a 75 year old myeloma patient than for somebody who has young children in the house. And for "letting the doctors just do their job". I subscribe to Reagan's "Trust but Verify".
I have caught my two cancer docs saying some really stupid things. Surely it was from them being too hurried and trying to appear as if they had looked at my labs before coming into the room.
I don't get bogged down in the minutia too much, but I really pay attention.
Yesterday, my M-spike was at 0.40 g/dL. For 3 years it has been between 0.18 and 0.25. But my doc comes in, holding the report and says "your blood is perfect again". And I commented on the rise in my M-spike, and he says "Well since you started at 5.50 6 years ago, this is really good news!" I didn't say anything but inside I knew I was listening to the interpretation of a non-thinking doctor.
I've had nurses trying to inject me with "one more Neupgen" shot after the doc had told me I had had enough.
I've had 5 or 6 interactions with my doctors over the last 6 years like that. They are really busy. I am one of 500 patients? 800? I don't blame them.
I think of them as advisers more than anything else.
Interrupted is probably more appropriate for a 75 year old myeloma patient than for somebody who has young children in the house. And for "letting the doctors just do their job". I subscribe to Reagan's "Trust but Verify".
I have caught my two cancer docs saying some really stupid things. Surely it was from them being too hurried and trying to appear as if they had looked at my labs before coming into the room.
I don't get bogged down in the minutia too much, but I really pay attention.
Yesterday, my M-spike was at 0.40 g/dL. For 3 years it has been between 0.18 and 0.25. But my doc comes in, holding the report and says "your blood is perfect again". And I commented on the rise in my M-spike, and he says "Well since you started at 5.50 6 years ago, this is really good news!" I didn't say anything but inside I knew I was listening to the interpretation of a non-thinking doctor.
I've had nurses trying to inject me with "one more Neupgen" shot after the doc had told me I had had enough.
I've had 5 or 6 interactions with my doctors over the last 6 years like that. They are really busy. I am one of 500 patients? 800? I don't blame them.
I think of them as advisers more than anything else.
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Stann - Name: Stann
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 9/11/09
- Age at diagnosis: 46
Re: Tom Brokaw diagnosed with multiple myeloma
I am probably the last person interested in Tom Brokaw's book to read it, since I waited for it to be available at our public library. I had the book on hold and started reading it yesterday. For me, it is a real 'page turner', since Mr. Brokaw's myeloma seems similar to the type I have. Did also experience the nagging low back pain, which led to really painful vertebral fractures. I can understand why he was in some sort of 'denial' about the myeloma, and wanted to keep working at his really interesting career. I don't think that you can blame him for that really. Probably it was only later, after meeting other myeloma patients, even Kathy Giusti, and having a chance to think over what it means to have cancer in one's 'golden years', that he realized what a great spokesman he could be for the disease. He is on the BOD for the Mayo Clinic, which means to me that he really cares about patients too!
Curiously, his first doctor, Dr. Morrie Gertz, is someone I have also spoken with. At a patient conference my husband and I attended when I is was a 'newbie', Dr. Gertz spoke. He has an analogy about the myeloma cancer cells being 'weeds in the garden of healthy blood cells', which people can relate to. Anyways, Dilip and I chatted with him over lunch. Still in pain from my fractures, I was in a bit of despair about ever riding my bicycle again, and in fact had given my new 'Rocky Mtn. Bike' away to one of our daughters! He assured me that I would be riding again within a year - very encouraging and I thank him for those kind words. It turned out to be true, and I gingerly got back on a bike the next year, and my daughter has returned to me my new bike also!
Brokaw's book is also interesting to me for the 'non-myeloma' portion, about his career as an international journalist. He covered many earth shattering events in his career.
Curiously, his first doctor, Dr. Morrie Gertz, is someone I have also spoken with. At a patient conference my husband and I attended when I is was a 'newbie', Dr. Gertz spoke. He has an analogy about the myeloma cancer cells being 'weeds in the garden of healthy blood cells', which people can relate to. Anyways, Dilip and I chatted with him over lunch. Still in pain from my fractures, I was in a bit of despair about ever riding my bicycle again, and in fact had given my new 'Rocky Mtn. Bike' away to one of our daughters! He assured me that I would be riding again within a year - very encouraging and I thank him for those kind words. It turned out to be true, and I gingerly got back on a bike the next year, and my daughter has returned to me my new bike also!
Brokaw's book is also interesting to me for the 'non-myeloma' portion, about his career as an international journalist. He covered many earth shattering events in his career.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Tom Brokaw diagnosed with multiple myeloma
Tom Brokaw provides an update on living his life with myeloma in a New York Times article. Here's the introduction:
For most of my adult life I have answered the question “Occupation?” with one word: journalist. I still do, but now I am tempted to add a phrase.
Cancer patient.
Three years ago, at age 73, I learned that I had an incurable cancer called multiple myeloma. At the time the statistical life span for patients with the disease was five years.
That number has not changed, but I have. After three years of chemotherapy, a spinal operation that cost me three inches of height, monthly infusions of bone supplements and drugs to prevent respiratory infection, I am now almost as close to 80 as I was to 70 at the time of the diagnosis. I have lived 60 percent of those five years.
The cancer is in remission, and I take the word of my medical team that I am doing well and should beat the standard life expectancy. I still lead a busy professional and personal life. Biking, swimming, fly-fishing and bird hunting remain active interests — but in a new context.
Even in remission, cancer alters a patient’s perception of what’s normal. Morning, noon and night, asleep and awake, malignant cells are determined to alter or end your life. Combating cancer is a full-time job that, in my case, requires 24 pills a day, including one that runs $500 a dose. For me, bone damage brought persistent back pain and unwelcome muscle deterioration.
Constant fatigue is a common signature of cancer patients, which separates them from healthy friends and family members. It is also what brings cancer patients together.
Link to full article:
Tom Brokaw, "Tom Brokaw: Learning to Live With Cancer," The New York Times, Oct 1, 2016 (link to full text of article)
For most of my adult life I have answered the question “Occupation?” with one word: journalist. I still do, but now I am tempted to add a phrase.
Cancer patient.
Three years ago, at age 73, I learned that I had an incurable cancer called multiple myeloma. At the time the statistical life span for patients with the disease was five years.
That number has not changed, but I have. After three years of chemotherapy, a spinal operation that cost me three inches of height, monthly infusions of bone supplements and drugs to prevent respiratory infection, I am now almost as close to 80 as I was to 70 at the time of the diagnosis. I have lived 60 percent of those five years.
The cancer is in remission, and I take the word of my medical team that I am doing well and should beat the standard life expectancy. I still lead a busy professional and personal life. Biking, swimming, fly-fishing and bird hunting remain active interests — but in a new context.
Even in remission, cancer alters a patient’s perception of what’s normal. Morning, noon and night, asleep and awake, malignant cells are determined to alter or end your life. Combating cancer is a full-time job that, in my case, requires 24 pills a day, including one that runs $500 a dose. For me, bone damage brought persistent back pain and unwelcome muscle deterioration.
Constant fatigue is a common signature of cancer patients, which separates them from healthy friends and family members. It is also what brings cancer patients together.
Link to full article:
Tom Brokaw, "Tom Brokaw: Learning to Live With Cancer," The New York Times, Oct 1, 2016 (link to full text of article)
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KarenaD - Name: Karen
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 4, 2015
- Age at diagnosis: 54