Cathy,
That is exactly what I was initially diagnosed with. All of my bone scans have come back negative and I have had no M spike to speak of. Fortunately, considering I only have 1 kidney, I was diagnosed fairly early and the damage to it wasn't too extensive. Much of the damage has been reversed since my SCT. I believe it was down about 40% at the time I was diagnosed. I still see the nephrologist on a regular basis, however, to keep a close eye on it.
Rick
Forums
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Religion in the forum - your thoughts?
Hi Rick.
My nephrologist is one who first started searching for why my kidney function was down to 33 percent. When I was diagnosed with multiple myeloma and started the dex, Velcade, and thalidomide, my kidney function dropped to 20 percent. After SCR it went up to about 30 percent.
I started diabetic diet in April and my kidney function increased to 41 percent! My kappa free light chains had gone back up to 65 ( normal under 19). But those have gone down every month since I started eating low carb (oncologist suggested this when I asked him. He said "it is simple but hard". My kappa free light chains were in normal range last 2 months!
I think I was farther in disease progression than you when I was diagnosed. Cathy
My nephrologist is one who first started searching for why my kidney function was down to 33 percent. When I was diagnosed with multiple myeloma and started the dex, Velcade, and thalidomide, my kidney function dropped to 20 percent. After SCR it went up to about 30 percent.
I started diabetic diet in April and my kidney function increased to 41 percent! My kappa free light chains had gone back up to 65 ( normal under 19). But those have gone down every month since I started eating low carb (oncologist suggested this when I asked him. He said "it is simple but hard". My kappa free light chains were in normal range last 2 months!
I think I was farther in disease progression than you when I was diagnosed. Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
Hello everyone,
I'm going to apologize right from the start. I know this is quite a long post, but I have something to say.
To begin, while Cathy's original comment kind of took me by surprise, I understand what she was trying to say. I do not believe she meant any disrespect, and even more importantly, she has apologized - not for her faith, but for the way she said it.
I know I haven't been a member of this board very long, but during the time I have spent reading the forums, I have never run across an angry comment quite like this. I may not be the sharpest tack in the box, but I believe that good manners, respect, and consideration for others should supersede all other human behavior.
Also, we all need to remember that, as members of this board, we have at least one very big thing in common - multiple myeloma.
There is already too much going on in our lives. Most of us are fighting tough battles, looking for answers and comfort in a community where we know there are so many others who understand what we are going through. Honestly, the last thing any of us need is more stress added to our lives.
Personally, I like the suggestion in an earlier post that persons of faith be given their own forum. I've often wished for a place that I could go and freely express my struggles with this cancer through the eyes of my faith in Christ to others who see through those same eyes. But then, I am basically computer illiterate, and I don't know what such an undertaking would entail. Doing such a thing would probably open a whole new can of worms anyway. So, I guess there is no easy solution that would best satisfy everyone on this board, except, and I repeat myself, maybe everyone could be respectful of everyone else.
It's only natural that not everyone is going to agree on everything, but maybe it would be best that if anyone takes issue with a comment, they could take it up with the original poster via private message. If anyone does post in anger to a comment, maybe it would be best to take both messages off the board. Or, maybe a new forum could be created where angry conversations could be relocated whether they be of a religious nature or not. The rest of us could then decide whether we want to read them, or not. Again, no easy answer. No matter what, though, we should remember that we are all in this fight together, and there is strength in numbers. Anyway, just my two cents worth.
Thanks to the Beacon staff for bringing this up.
Mary
I'm going to apologize right from the start. I know this is quite a long post, but I have something to say.
To begin, while Cathy's original comment kind of took me by surprise, I understand what she was trying to say. I do not believe she meant any disrespect, and even more importantly, she has apologized - not for her faith, but for the way she said it.
I know I haven't been a member of this board very long, but during the time I have spent reading the forums, I have never run across an angry comment quite like this. I may not be the sharpest tack in the box, but I believe that good manners, respect, and consideration for others should supersede all other human behavior.
Also, we all need to remember that, as members of this board, we have at least one very big thing in common - multiple myeloma.
There is already too much going on in our lives. Most of us are fighting tough battles, looking for answers and comfort in a community where we know there are so many others who understand what we are going through. Honestly, the last thing any of us need is more stress added to our lives.
Personally, I like the suggestion in an earlier post that persons of faith be given their own forum. I've often wished for a place that I could go and freely express my struggles with this cancer through the eyes of my faith in Christ to others who see through those same eyes. But then, I am basically computer illiterate, and I don't know what such an undertaking would entail. Doing such a thing would probably open a whole new can of worms anyway. So, I guess there is no easy solution that would best satisfy everyone on this board, except, and I repeat myself, maybe everyone could be respectful of everyone else.
It's only natural that not everyone is going to agree on everything, but maybe it would be best that if anyone takes issue with a comment, they could take it up with the original poster via private message. If anyone does post in anger to a comment, maybe it would be best to take both messages off the board. Or, maybe a new forum could be created where angry conversations could be relocated whether they be of a religious nature or not. The rest of us could then decide whether we want to read them, or not. Again, no easy answer. No matter what, though, we should remember that we are all in this fight together, and there is strength in numbers. Anyway, just my two cents worth.
Thanks to the Beacon staff for bringing this up.
Mary
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inky100 - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2005
- Age at diagnosis: 43
Re: Religion in the forum - your thoughts?
Now that there is a thread called "Religion in the forum", what if we use this thread to discuss spiritual struggles freely? Everyone who is offended could stay off this thread.
There are lots of threads with a distinct purpose.
I wanted honest discussion about my struggles with multiple myeloma -- not to try to win anyone to my religion or win notches on my belt. We could agree not to mention our particular church or denomination and not try to proselytize.
I would not have admitted that I accused God of not caring if I were trying to sound "holier than thou" or self righteous.
There are lots of threads with a distinct purpose.
I wanted honest discussion about my struggles with multiple myeloma -- not to try to win anyone to my religion or win notches on my belt. We could agree not to mention our particular church or denomination and not try to proselytize.
I would not have admitted that I accused God of not caring if I were trying to sound "holier than thou" or self righteous.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
I wasn't going to respond to the original question but I just read all of the posts to date and would like to add my opinion.
Like others, I was taken back by both the original posting citing Jesus' death and the harshness of the response. Cathy, I appreciate what you were trying to say and note that all of us have times when what we say doesn't come across the way we meant it. This is especially true with electronic communication where we can't see the other persons face or have an immediate, clarifying dialog.
I love The Myeloma Beacon because it is the one place I can go to get information, share information, and share joy, sorrow, and concern with others dealing with myeloma. I don't want to talk about religion, and I don't want to read about how others' deal with myeloma through their religious beliefs. Why? Because unfortunately, those discussions eventually sound like proselytizing. I was going to say "inevitably" but I'm not sure it is inevitable. Certainly probable.
That said, I can see where it might be very helpful to some to have that discussion. Therefore, I like the idea of having a religious-specific posting where discussions can occur, if posters can have keep their postings civil, non-proselytizing, and non condemning. I have my doubts, and I will absolutely shun those postings.
For the rest of us, let's continue to talk about all aspects of living with myeloma, just like we have been, and keep religion out of the rest of our postings.
Dana A
Like others, I was taken back by both the original posting citing Jesus' death and the harshness of the response. Cathy, I appreciate what you were trying to say and note that all of us have times when what we say doesn't come across the way we meant it. This is especially true with electronic communication where we can't see the other persons face or have an immediate, clarifying dialog.
I love The Myeloma Beacon because it is the one place I can go to get information, share information, and share joy, sorrow, and concern with others dealing with myeloma. I don't want to talk about religion, and I don't want to read about how others' deal with myeloma through their religious beliefs. Why? Because unfortunately, those discussions eventually sound like proselytizing. I was going to say "inevitably" but I'm not sure it is inevitable. Certainly probable.
That said, I can see where it might be very helpful to some to have that discussion. Therefore, I like the idea of having a religious-specific posting where discussions can occur, if posters can have keep their postings civil, non-proselytizing, and non condemning. I have my doubts, and I will absolutely shun those postings.
For the rest of us, let's continue to talk about all aspects of living with myeloma, just like we have been, and keep religion out of the rest of our postings.
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: Religion in the forum - your thoughts?
I know I am a year late here, but I did note something I don't remember anyone bringing up. The second person sounded like someone very much in the anger phase. It sounded to me he / she needed somewhere to strike out. Angry at God, man, the world, multiple myeloma, and so on. I am sure we have all had moments of anger and no way to express it. When that happens, we tend to do and / or say things that we would normally never have said or done. While I am just the caregiver, I see some of what my husband goes through and there is probably much more he hides from me. Not wanting to worry me.
I love God. I love this site and truly appreciate all who are on it. All who support to me. If I have said anything to offend anyone in this post, I apologize now. I would not deliberately hurt anyone. There is already too much pain a sorrow in this world. ((Hugs)) to all.
I love God. I love this site and truly appreciate all who are on it. All who support to me. If I have said anything to offend anyone in this post, I apologize now. I would not deliberately hurt anyone. There is already too much pain a sorrow in this world. ((Hugs)) to all.
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Religion in the forum - your thoughts?
As long as posts are civil, I don't care what anyone posts
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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Jmiller - Name: Harleygirl
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: January 2014
- Age at diagnosis: 57
Re: Religion in the forum - your thoughts?
Wow, a year later this thread was found again!
I had originally responded to a thread called, "The Grim Reaper" - started by a young person with multiple myeloma who was obviously contemplating death. Most of us with multiple myeloma think about early death - and we worry about family that will be left and things we never finished. I was honestly just trying to share thoughts that helped me - and still help me when I feel anxious and afraid of the future. I take comfort in thinking about lives that have had great impact even though they were short - and Jesus was to me an obvious example since He died when just 33 years old and had to leave his disciples, who didn't look like they would make it without him - He had to leave everything very half baked when He died.
One of the greatest sources of grief to me was thinking of the grief of my family. Thinking of Jesus helped me let go of everyone I love -my husband, children and grandchildren and even parents. I could put them in God's hands
I had to let go of my plans to live to be 85 years old - and I often tell the Lord that I will live as long as He gives me - but I do everything I possibly can to live a long and healthy life.
.
Cathy.
I had originally responded to a thread called, "The Grim Reaper" - started by a young person with multiple myeloma who was obviously contemplating death. Most of us with multiple myeloma think about early death - and we worry about family that will be left and things we never finished. I was honestly just trying to share thoughts that helped me - and still help me when I feel anxious and afraid of the future. I take comfort in thinking about lives that have had great impact even though they were short - and Jesus was to me an obvious example since He died when just 33 years old and had to leave his disciples, who didn't look like they would make it without him - He had to leave everything very half baked when He died.
One of the greatest sources of grief to me was thinking of the grief of my family. Thinking of Jesus helped me let go of everyone I love -my husband, children and grandchildren and even parents. I could put them in God's hands
I had to let go of my plans to live to be 85 years old - and I often tell the Lord that I will live as long as He gives me - but I do everything I possibly can to live a long and healthy life.
.Cathy.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Religion in the forum - your thoughts?
Lil' Monkey wrote:
I agree with Lil' Monkey
... and hey, let's discuss it!
If not now, when?
M
x
As long as posts are civil, I don't care what anyone posts
I agree with Lil' Monkey
... and hey, let's discuss it!
If not now, when?
M
x
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Mijji - When were you/they diagnosed?: 2011
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