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Did you struggle with "coming out" about your diagnosis?
I was diagnosed with smoldering myeloma a few months back. I am told I have an intermediate risk level and I have a chromosome 4:14 translocation. I'm not quite sure what that means, but it doesn't sound awesome. I run quite a bit. I'm not fast, but I am consistent. I have ran numerous races. I signed up for a 5K myeloma fundraiser and was taken aback a bit during registration. The form asked "are you a patient?" I have been so private about my diagnosis. It occurred to me that this will be the 1st race where I am outed as a member of the myeloma club. From what I gather, my race shirt will look different. I have such mixed feelings of people knowing that I have cancer. I think because I am still processing and I fully haven't come to terms with it that sharing my diagnosis is freeing but daunting in so many ways. Does anyone else struggle with wanting to keep things private and also wanting to share at the same time?
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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?
This sounds very familiar to me. I didn't try to keep a secret but I was not open about sharing my diagnosis at first. I can't really remember what changed my approach but I have found that talking about it without pushing it in peoples' faces really is helpful. You will find your own comfort level as time goes on.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Did you struggle with "coming out" about your diagnosis?
I don't know why, but I've been a completely open book about this. I guess it helps because I can talk to people and that really helped in the beginning. I'm a runner too and I did a couple of races with a shirt that said the date of my SCT on it. I'm grateful I can run and I want it to bring hope to others.
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
Re: Did you struggle with "coming out" about your diagnosis?
I did not try to hide my diagnosis because it was not really possible. That is hard to do when three days after I got the diagnosis I am in the hospital with kidney failure for a week, being wheeled around in a wheel chair because of severe back pain, and taking all kinds of drugs that are going to show up in my urinalysis drug testing for my security clearance at work. Now looking at me you would not know I had myeloma. I do not advertise it to everyone I meet, that feels awkward and feel like it would come across like I did some kind of special achievement just because I have cancer. But nor do I hide my having myeloma when it make sense or helps clarify things to bring it up. If I were running or participating in a race or event I would not hesitate to where a myeloma related or themed shirt or jersey especially to raise awareness and for fundraising.
My GF has raced the New York ING marathon and Lake Placid Ironman to raise funds for myeloma research wearing myeloma Team for Cures jerseys and in other races as well. I have a myeloma-themed bike jersey and wear it on occasion with the rest of my bike jerseys. When I was at the Lake Placid Ironman luncheon it did feel a bit awkward being singled with others with myeloma like it was some kind of award or special status or achievement which it is not but I realized it was silly to feel that way. Part of my being asked to be identified as having myeloma and be present there was so I can show my appreciation to the organizations raise money for myeloma research and race participants doing the same. While many had some connection to myeloma which is why they were doing all this, many did not and it was good for them to see somebody like me there cheering them on and showing appreciation for the fund raising they did. If I remember correctly for the Lake Placid Ironman the fund raising minimum was $5000 which is no small amount.
My GF has raced the New York ING marathon and Lake Placid Ironman to raise funds for myeloma research wearing myeloma Team for Cures jerseys and in other races as well. I have a myeloma-themed bike jersey and wear it on occasion with the rest of my bike jerseys. When I was at the Lake Placid Ironman luncheon it did feel a bit awkward being singled with others with myeloma like it was some kind of award or special status or achievement which it is not but I realized it was silly to feel that way. Part of my being asked to be identified as having myeloma and be present there was so I can show my appreciation to the organizations raise money for myeloma research and race participants doing the same. While many had some connection to myeloma which is why they were doing all this, many did not and it was good for them to see somebody like me there cheering them on and showing appreciation for the fund raising they did. If I remember correctly for the Lake Placid Ironman the fund raising minimum was $5000 which is no small amount.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Did you struggle with "coming out" about your diagnosis?
My husband was diagnosed with multiple myeloma in late November 2014. For months he did not share his diagnosis with anyone except immediate family. I spoke to his Hematologist in early January and he said that it would take at least four months for him to come to grips with his diagnosis and that when he was ready he would open up to others. In mid-February a very good friend of his called me at work because my husband had not responded to his calls. When confronted with the fact that his friend called me he broke down crying and then made the call. Since then he has found great comfort in knowing that his friend cares so much. We have since told others at our church and close friends and it is remarkable how all of them care so much and just want to be able to help.
The plan is to start stem cell collection on June 22. We are grateful to those that have expressed a willingness to help. With the daunting months ahead of us I am certain that we will need help and I am so grateful that he has come to terms with his diagnosis and has been able to open up to others.
Wishing you the best.
The plan is to start stem cell collection on June 22. We are grateful to those that have expressed a willingness to help. With the daunting months ahead of us I am certain that we will need help and I am so grateful that he has come to terms with his diagnosis and has been able to open up to others.
Wishing you the best.
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Jane B - Name: Jane B
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 60
Re: Did you struggle with "coming out" about your diagnosis?
I also was diagnosed at the smoldering stage and with the "watch and wait" treatment philosophy. Because of that philosophy it took me quite a while to really own that I had cancer. I did tell one of my work colleagues immediately because she was the consulting PT for the BMT program in the health system where I worked. I had asked her to ask around about which oncologist was recommended for myeloma so that I could schedule a second opinion with that oncologist. I also told my immediate supervisor because I had no idea when, and if I would need treatment and miss some work, so I wanted her support. In addition I told my sister and my best friend.
I didn't tell anyone else until things started to progress and I had more doctor appointments. It gradually became known to others at work, but not all. I did tell my friends. And, that's when I started to attend a support group. Looking back I think that I would do it the same way again. There wasn't any need for anyone, other than the few I told immediately, to know what was going on. When it became important for others to know, I told them.
In addition to finally letting others know of my diagnosis, that's when I also took the measures to do a will, medical power of attorney and living will legal documents. If you haven't done so already these are really important documents to have done and readily available should anything happen suddenly.
Nancy in Phila
I didn't tell anyone else until things started to progress and I had more doctor appointments. It gradually became known to others at work, but not all. I did tell my friends. And, that's when I started to attend a support group. Looking back I think that I would do it the same way again. There wasn't any need for anyone, other than the few I told immediately, to know what was going on. When it became important for others to know, I told them.
In addition to finally letting others know of my diagnosis, that's when I also took the measures to do a will, medical power of attorney and living will legal documents. If you haven't done so already these are really important documents to have done and readily available should anything happen suddenly.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Did you struggle with "coming out" about your diagnosis?
I found this to be one of the more difficult aspects of handling this disease. My doctors pretty much guided me in putting together a therapeutic plan, but no one helped with the part about who to tell and when and how. My wife was there when I got diagnosed, so I didn't have to tell her. I spoke with my parents, brother, and sister within a few days. It was another month or so, though, before I could get myself together enough to talk with friends, colleagues, etc. I began by telling my teenage daughters and my closest friends. I guess I was pretty blunt about it, and maybe more detailed than I needed to be, given a few rather horrified looks that I got. I spoke with my supervisor and our group manager once I had the treatment plan down and knew how it would affect my work schedule. It was shortly after that when I began telling others at work. One thing they particularly needed to know about was the potential effect of dexamethasone on my mood and behavior. Of course, everyone was supportive and helpful, and I benefited tremendously from that.
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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: Did you struggle with "coming out" about your diagnosis?
Good Afternoon!
I am so glad that you posted this question. When I was diagnosed in February of this year I did not tell many people. My husband and children, one very close friend and a co-worker. That was it. I did not really "come out" until after my first cycle of chemo therapy at the end of March.
I don't have any answers as to why and even still have problems talking about it. There is a wealth of support and comfort to be found in family and friends and I probably should have talked to more people in the beginning.
I wish you well in your journey!
Love and Blessing
Clair
I am so glad that you posted this question. When I was diagnosed in February of this year I did not tell many people. My husband and children, one very close friend and a co-worker. That was it. I did not really "come out" until after my first cycle of chemo therapy at the end of March.
I don't have any answers as to why and even still have problems talking about it. There is a wealth of support and comfort to be found in family and friends and I probably should have talked to more people in the beginning.
I wish you well in your journey!
Love and Blessing
Clair
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ClairB - Name: Clair B
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 12, 2015
- Age at diagnosis: 53
Re: Did you struggle with "coming out" about your diagnosis?
I was scared of the terminal / incurable aspect of multiple myeloma.
I was happy to have some answers, as to why my body was falling apart.
I was pretty open about it, within reason.
It is, what it is...
I was happy to have some answers, as to why my body was falling apart.
I was pretty open about it, within reason.
It is, what it is...
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Rneb
Re: Did you struggle with "coming out" about your diagnosis?
I didn't have to 'struggle' with it.
First, I had to figure it out for myself, since my oncologist was in a 'let's not tell the patient everything because she'll panic and what she doesn't know won't inconvenience me' mode. Indeed, I was the first person I told ... and the second person I told was the oncologist.
When I did figure it out, and I told my mother, she frankly didn't believe me and called me a hypochondriac.
Then, when the diagnosis became 'official' official – that is, when the doc finally admitted to me that, yeah, it was multiple myeloma – I no longer had to tell anybody, because my mother told everybody. (sigh) I couldn't (and still can't, after two years) take her ANYWHERE without her slipping it into the conversation.
... I'm HER caretaker, so she goes pretty much everywhere I do.
She told my siblings, my aunts and uncles, and all the way down to fourth cousins twice removed. It's a good thing she doesn't "do" Facebook, or my diagnosis would be plastered all over the Internet. As a result, I just shrug my shoulders and deal. Since I can't exactly hide it from anybody, I may as well wear the t-shirts and get it over with quick. "Hi, I'm Diana, I have multiple myeloma ,.. let's quick get to the next step in the introduction."
Luckily I don't have to take Mom absolutely everywhere with me; I can go to the occasional movie without it being announced on screen, for instance ...
First, I had to figure it out for myself, since my oncologist was in a 'let's not tell the patient everything because she'll panic and what she doesn't know won't inconvenience me' mode. Indeed, I was the first person I told ... and the second person I told was the oncologist.
When I did figure it out, and I told my mother, she frankly didn't believe me and called me a hypochondriac.
Then, when the diagnosis became 'official' official – that is, when the doc finally admitted to me that, yeah, it was multiple myeloma – I no longer had to tell anybody, because my mother told everybody. (sigh) I couldn't (and still can't, after two years) take her ANYWHERE without her slipping it into the conversation.
... I'm HER caretaker, so she goes pretty much everywhere I do.
She told my siblings, my aunts and uncles, and all the way down to fourth cousins twice removed. It's a good thing she doesn't "do" Facebook, or my diagnosis would be plastered all over the Internet. As a result, I just shrug my shoulders and deal. Since I can't exactly hide it from anybody, I may as well wear the t-shirts and get it over with quick. "Hi, I'm Diana, I have multiple myeloma ,.. let's quick get to the next step in the introduction."
Luckily I don't have to take Mom absolutely everywhere with me; I can go to the occasional movie without it being announced on screen, for instance ...
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
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