I did not struggle for a nanosecond. An hour (literally) after I was diagnosed I sent an e-mail to everyone I know - both personal and professional contacts - telling them what little I knew about my new disease. Why did I do that? Partly because I used to be a gossip columnist and I thought it was a story people who knew me would be interested to know. In the end, I was right.
I did that partly because there is - or should be - no stigma whatsoever attached to multiple myeloma or any cancer. Unlike Tom Brokaw, who stupidly (in my opinion) kept his diagnosis a secret for ages, I feel that the more people that know of it and about it, the better. (He obviously changed his self-serving mind when it came time to sell his book!).
Did other people I knew have ideas, opinions, thoughts, friends, etc., that could help me? Can't find out if they don't know I need help.
I wasn't looking for sympathy, or attention. I was looking to help myself, and maybe others. Some saw that I was open and honest about my diagnosis, which made it more possible for them to be the same way. And people did (and continue to) have good advice, words of wisdom, diet tips, doctor suggestions, etc.
Decades ago I used to go to these meetings where a lot of clichés were bandied about. One was, "You're only as sick as your secrets." Why should your cancer be a secret?
If someone asks a question you can't answer, or don't want to, tell them that. In my experience, every person that has commented has been another sign of support which has contributed to my good spirits and (fingers crossed) continuing good health.
Also, how do you decide who to tell? And what if someone you did not tell finds out (which inevitably will happen) and is insulted that you did not inform them? Of course, who cares what anyone else thinks, it is ME that has cancer. But realistically, why not tell people? If they want to engage you, they will.
Of the hundreds of people I know that now know I have multiple myeloma, every single one that has remarked to me has been supportive. Sure I have enemies. Who doesn't. But even they are human. And cancer humanizes almost everybody.
Now, seven months after that first e-mail, I still send out periodic e-mails to everyone who seems to want to know my progress, or who asks how I am doing.
Forums
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Did you struggle with "coming out" about your diagnosis?
I've gone the different road. I've told people I had a type of blood cancer. If they asked further questions, I said it was like Hodgkins. This helped explain the balding and chemo. But since Hodgkins has a 90% cure rate, I liked hanging my hat on that disease.
I'm self employed and telling people I have a cancer with a life expectancy of 5-10 years is not going to help our finances much.
Of course friends and family know about the myeloma, but when running into somebody I know at the hardware store, I don't want that person feeling sorry for me. It'll be 6 years in September and most assume I'm cured.
Maybe by embracing my less menacing cancer (Hodgkins), I am more positive? But the numbers did a little uptick last month, so ... we'll see.
I'm self employed and telling people I have a cancer with a life expectancy of 5-10 years is not going to help our finances much.
Of course friends and family know about the myeloma, but when running into somebody I know at the hardware store, I don't want that person feeling sorry for me. It'll be 6 years in September and most assume I'm cured.
Maybe by embracing my less menacing cancer (Hodgkins), I am more positive? But the numbers did a little uptick last month, so ... we'll see.
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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: Did you struggle with "coming out" about your diagnosis?
I'm pretty open about it, and have been from the start. If the context of the conversation warrants being "out", I'm "out". And I have certainly told friends across the world and locally. It is just not a big deal to me.
I think a lot of this is a basic personality tendency. I think I told a lot of people early out of fear, and somehow, in the telling, there was comfort. Now I tell it just as one of many elements of my story. I don'y need or want attention, or sympathy. And most folks have heard quite a few difficult "stories", and lived a few themselves, at my age (60 plus). So they react in a caring but "appropriate" manner.
Wesley
I think a lot of this is a basic personality tendency. I think I told a lot of people early out of fear, and somehow, in the telling, there was comfort. Now I tell it just as one of many elements of my story. I don'y need or want attention, or sympathy. And most folks have heard quite a few difficult "stories", and lived a few themselves, at my age (60 plus). So they react in a caring but "appropriate" manner.
Wesley
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wesley - Who do you know with myeloma?: me
- When were you/they diagnosed?: July, 2013
- Age at diagnosis: 60
Re: Did you struggle with "coming out" about your diagnosis?
Wow, so many of you are in your 40's. I didn't think those people existed. I told my husband that I was like a unicorn in the myeloma world. White, female and under 50, all which according to statistics are incredibly rare. I teased that I may even be photographed for science. I guess I'm not the only unicorn. It's actually comforting knowing other unicorns exist.
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ColleenM - Name: Colleen Mabasa
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 41
Re: Did you struggle with "coming out" about your diagnosis?
Like TMcD, I didn't struggle much about telling people. I felt I needed to explain to people I worked with and people in my synagogue why I was withdrawing from the leadership roles I had. Yes, I could have simply said I was sick, but I like honesty. And an amazing outpouring of love and support and prayer was the result. I believe very much that that outpouring helped me to get to complete remission – because I was Stage 3 when I was finally diagnosed, was hospitalized for hypercalcemia and the beginnings of kidney problems shortly afterward, and spent the next couple of months teleworking nearly full time while getting induction treatment.
I have since transferred to a different agency but still manage staff. I have been open with them too. They rise to the occasion whenever I don't feel well, knowing that I have their back when they or their family members don't feel well. They take care of everything and do a great job of it, so I never have to worry. That also helps to keep me well.
In fact, the only negative was my mother, who made the fact that I had cancer all about her. But even she has come around to being supportive (sort of ...)
Dana A
I have since transferred to a different agency but still manage staff. I have been open with them too. They rise to the occasion whenever I don't feel well, knowing that I have their back when they or their family members don't feel well. They take care of everything and do a great job of it, so I never have to worry. That also helps to keep me well.
In fact, the only negative was my mother, who made the fact that I had cancer all about her. But even she has come around to being supportive (sort of ...)
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Did you struggle with "coming out" about your diagnosis?
I am also one who has tried to keep to minimum people. My reasons are different. I was first diagnosed by an oncologist 30 years ago as having "blood cancer". I was 37. The reason I was sent to the oncologist was that I lost my hearing completely in one day traveling from London to Chicago. I could not hear a Boeing 747 or toilet flushing sound or any conversation with my immigration and custom upon arrival in Chicago. Swallowing, coffee, and finally antihistamine by my general physician was of no help. He found my blood protein high 10 percent and sent me to oncologist. The oncologist took me to all kind of test, MRI. I was feeling left side numbness head to toe, bone marrow (20 percent), stress test, trade mill, EKG, etc.
My oncologist will see me every week and ask me for any symptoms. Finally my general physician sent me to his professor at the University of Iowa Hospital, Dr. Brian F. McCabe, head of otolaryngology, Dr. McCabe ruled out blood cancer. He diagnosed it as auto immune ear disease. My treatment was Cytoxan (cyclophosphamide) and prednisone. I recovered my hearing 60 percent right and 40 percent left ear. He felt if I would have come immediately I would have fully recovered. I had waited for over three months between my general physician and oncologist. He wanted me to avoid stress. And explained me that blood pressure in my case is not a disease but symptom that I am stressed out. He diagnosed me to be a G6PD person - a X chromosome inherited deficiency which has some of the symptoms similar to multiple myeloma - anemia, shortness of breadth, low hemoglobin count, in extreme case kidney failure etc.
Seven years after I was caught again with severe symptoms. I had not slept more than two hours a day, due to work, for almost eight days. I could not walk straight, hear properly, and was suffering from vertigo and dizziness. I was traveling for work in Hanoi, Vietnam. I returned to the USA and this time the doctor at the University of Iowa Hospital placed me on IV Cytoxan and prednisone. I was in the hospital for ten days.
He warned me to avoid stress. He also advised me to avoid blood pressure (BP) medicine. I started taking BP medicine six years ago on advice of my current general physician who treats me like his father. I visited University Of Iowa Hospital but the current head of otolarygology does not want to hear about Dr. McCabe or G6PD.
In above situation, I kept being diagnosed with blood cancer to myself.
Two years ago my general physician found my blood protein high. I explained him about Dr. McCabe and G6PD but he said he does not want to take chance and referred me to a hematologist. I was being checked every six month and then every three month as my M-spike reading and IgG reading started getting higher. In July 2014 I was referred to the Mayo Clinic. It was diagnosed as indolent multiple myeloma. I have no symptom fitting in to CRAB except, PET scan found small lytic lesion at three places.
On February 16 I was diagnosed to be Stage IIA multiple myeloma. I let my children know and all my family members know about the diagnosis. My wife regularly meets my physician and children came to understand the diagnosis and course of treatment.
I started my Revlimid 25 mg and dexamethasone 20 mg (reduced from 40 mg after terrible side effects) in March. After two cycles, my M-spike, IgG, lambda kappa ratio, hemoglobin became better than it was two years ago. I stopped chemo for a month and this did not make my Mayo physician happy. However, once he saw the blood test result, he was very happy. I have started my third cycle of Revlimid + dex and I am expected to finish fifth before going back for stem cell collection to Mayo in first week of September. I will also have check on G6PD.
I am still hesitant to share it with my coworkers. I was also hesitant to share on this forum. But today I decided I need to do this.
Thank you.
My oncologist will see me every week and ask me for any symptoms. Finally my general physician sent me to his professor at the University of Iowa Hospital, Dr. Brian F. McCabe, head of otolaryngology, Dr. McCabe ruled out blood cancer. He diagnosed it as auto immune ear disease. My treatment was Cytoxan (cyclophosphamide) and prednisone. I recovered my hearing 60 percent right and 40 percent left ear. He felt if I would have come immediately I would have fully recovered. I had waited for over three months between my general physician and oncologist. He wanted me to avoid stress. And explained me that blood pressure in my case is not a disease but symptom that I am stressed out. He diagnosed me to be a G6PD person - a X chromosome inherited deficiency which has some of the symptoms similar to multiple myeloma - anemia, shortness of breadth, low hemoglobin count, in extreme case kidney failure etc.
Seven years after I was caught again with severe symptoms. I had not slept more than two hours a day, due to work, for almost eight days. I could not walk straight, hear properly, and was suffering from vertigo and dizziness. I was traveling for work in Hanoi, Vietnam. I returned to the USA and this time the doctor at the University of Iowa Hospital placed me on IV Cytoxan and prednisone. I was in the hospital for ten days.
He warned me to avoid stress. He also advised me to avoid blood pressure (BP) medicine. I started taking BP medicine six years ago on advice of my current general physician who treats me like his father. I visited University Of Iowa Hospital but the current head of otolarygology does not want to hear about Dr. McCabe or G6PD.
In above situation, I kept being diagnosed with blood cancer to myself.
Two years ago my general physician found my blood protein high. I explained him about Dr. McCabe and G6PD but he said he does not want to take chance and referred me to a hematologist. I was being checked every six month and then every three month as my M-spike reading and IgG reading started getting higher. In July 2014 I was referred to the Mayo Clinic. It was diagnosed as indolent multiple myeloma. I have no symptom fitting in to CRAB except, PET scan found small lytic lesion at three places.
On February 16 I was diagnosed to be Stage IIA multiple myeloma. I let my children know and all my family members know about the diagnosis. My wife regularly meets my physician and children came to understand the diagnosis and course of treatment.
I started my Revlimid 25 mg and dexamethasone 20 mg (reduced from 40 mg after terrible side effects) in March. After two cycles, my M-spike, IgG, lambda kappa ratio, hemoglobin became better than it was two years ago. I stopped chemo for a month and this did not make my Mayo physician happy. However, once he saw the blood test result, he was very happy. I have started my third cycle of Revlimid + dex and I am expected to finish fifth before going back for stem cell collection to Mayo in first week of September. I will also have check on G6PD.
I am still hesitant to share it with my coworkers. I was also hesitant to share on this forum. But today I decided I need to do this.
Thank you.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Did you struggle with "coming out" about your diagnosis?
I decided to keep my diagnosis very private. Only my immediate family knows about my situation. I like it that way since I really don't want "cancer" to color my conversation and my relationships, whether they be personal or professional ... especially since I'm only smoldering. That may change if I ever need to undergo drug therapy and any side effects may make it obvious that I'm dealing with something quite out of the ordinary.
This need for privacy is just the way I'm wired. I also understand that others get a great deal of relief in opening up to their friends about such matters.
I don't think that there is any right answer in how to deal with sharing one's health status and especially a cancer diagnosis. Everyone has to choose their own path.
This need for privacy is just the way I'm wired. I also understand that others get a great deal of relief in opening up to their friends about such matters.
I don't think that there is any right answer in how to deal with sharing one's health status and especially a cancer diagnosis. Everyone has to choose their own path.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Did you struggle with "coming out" about your diagnosis?
After the MGUS diagnosis in 2009, I eventually told close friends and family. The SMM "upgrade" a year and a half ago shocked me into changing my thinking about my life, planning of my future, etc. I again told family and close friends, in particular so that the decisions I make and way I live my life would make sense to them, and I would not have to either make up some false reasons or appear stupid or crazy to them. And I needed friends to talk to about what I was going thru and my thought process about my future (and present).
For instance, does it make sense to save for a long retirement when you might not even reach retirement? Or should I retire early, to try to do some travelling or pursue other interests I meant to do later, now that I know there might not be a "later", or that I may not be in good enough health, or might be tied down to a treatment regimen that keeps me in one place?
I am a self-employed professional, working project-to-project so always needing new clients. I do not share my condition with clients (I would not normally talk about my health with them anyway). It could have a dampening effect on the referrals that are my only source of work. Since new referrals are likely to search for me online, I do not use my real name or photo in public postings.
I did tell one former client, however. We were catching up over a Saturday lunch and pitcher of margaritas, and finally the subject came up of my client's new job. Imagine my surprise to find out by accident that the client is deeply involved in development of a promising new anti-myeloma drug! I broke my rule and revealed I was SMM - and have since gotten a referral to a friend of this client's - life can be so surprising.
For instance, does it make sense to save for a long retirement when you might not even reach retirement? Or should I retire early, to try to do some travelling or pursue other interests I meant to do later, now that I know there might not be a "later", or that I may not be in good enough health, or might be tied down to a treatment regimen that keeps me in one place?
I am a self-employed professional, working project-to-project so always needing new clients. I do not share my condition with clients (I would not normally talk about my health with them anyway). It could have a dampening effect on the referrals that are my only source of work. Since new referrals are likely to search for me online, I do not use my real name or photo in public postings.
I did tell one former client, however. We were catching up over a Saturday lunch and pitcher of margaritas, and finally the subject came up of my client's new job. Imagine my surprise to find out by accident that the client is deeply involved in development of a promising new anti-myeloma drug! I broke my rule and revealed I was SMM - and have since gotten a referral to a friend of this client's - life can be so surprising.
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: Did you struggle with "coming out" about your diagnosis?
I was diagnosed in 2013. I'm from a smaller city, but we do have oncologists here. It took a very long time to get diagnosed. My son in law is an oncologist in a major city, and my wife was on the phone as we were leaving the doctor's office. All three of my kids knew within the hour. None of them would have known if it were up to me.
I caught a virus that put me in ICU right when my oldest brother was in town. I was so weak, I could hardly walk. He would not leave me in peace, hounded me all the time, not buying the virus story, and a lot more. I finally gave in, but I left my wife fill them in. He proceeded to tell two more brothers, so there may be close to ten who know.
My nieces and nephews and in laws have a need to know. I wouldn't want anyone, especially the younger people, to worry about me. To tell the truth, I don't worry about me that much.
I am very happy with my decision and will continue this way. To each his own.
I caught a virus that put me in ICU right when my oldest brother was in town. I was so weak, I could hardly walk. He would not leave me in peace, hounded me all the time, not buying the virus story, and a lot more. I finally gave in, but I left my wife fill them in. He proceeded to tell two more brothers, so there may be close to ten who know.
My nieces and nephews and in laws have a need to know. I wouldn't want anyone, especially the younger people, to worry about me. To tell the truth, I don't worry about me that much.
I am very happy with my decision and will continue this way. To each his own.
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