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Re: I Survived 2 Years: What I've Learned
Awesome post, Matt. I needed to read that as someone who was diagnosed this week. I hope I can inspire others in the same way. Thanks.
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GFNY1966 - Name: Edward
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 48
Re: I Survived 2 Years: What I've Learned
Matt -
This is my first post to the forum. As a recently diagnosed patient who has just begun treatment, I've been wrestling with how to "treat" the emotion side of this disease.
Matt, you have a gift and skill of helping others navigate this path we are all on. Thank you so much for this post and subsequent thread. You have gotten my day (and life) off to a great start.
Please keep sharing what you have observed, experienced, and learned. I'll be looking for your posts.
Best,
Kevin
This is my first post to the forum. As a recently diagnosed patient who has just begun treatment, I've been wrestling with how to "treat" the emotion side of this disease.
Matt, you have a gift and skill of helping others navigate this path we are all on. Thank you so much for this post and subsequent thread. You have gotten my day (and life) off to a great start.
Please keep sharing what you have observed, experienced, and learned. I'll be looking for your posts.
Best,
Kevin
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Jetlag - Name: Kevin
- Who do you know with myeloma?: myself and a couple others
- When were you/they diagnosed?: Aug 2014
- Age at diagnosis: 59
Re: I Survived 2 Years: What I've Learned
I am 7 months post diagnosis and 72 days post transplant. Thank you for the post! I needed to hear that today.
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Mary Ellen
Re: I Survived 2 Years: What I've Learned
Well said. Please continue to post. Uplifting and encouraging; sSo needed! Thank you. God bless.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: I Survived 2 Years: What I've Learned
I read the original post and I have to tell y'all that, well, when I was first diagnosed with multiple myeloma, it sorta 'snuck up' on me. Anemia and a caring PCP who referred me to an oncologist. Lots of time to take the tests, figure out what was going on, do the research, deal with all the folks around me who were in extreme denial (It's all in your head, don't be a 'drama queen", etc.) until I knew what was going on before 'the talk.'
No surprises. At that point it was, I can't say it was a 'new adventure,' exactly,' but it was a 'new challenge,' one that I figured I could 'gird up my loins' and deal with. The induction therapy, having to get dentures, cataract surgery – each step ended up with a 'bonus,' of sorts, you see. New teeth meant having a great smile for the first time in decades. Cataract surgery meant I could see!
Chemo plus transplant? Well, that got rid of all the plasma cells in the bone marrow, right? I went into three years of complete remission. So I had some mild side effects from Revlimid; so what? Nothing I couldn't handle.
I was doing just fine. The docs said I was doing just fine, and talking about many years, perhaps a decade or so, of remission.
Then I wanted to sing at my son's wedding, So when I got a cold I went to see the doc about emergency 'voice repair" and got hit by a freight train, I still feel that way, nearly a month later. Perhaps it's because I didn't have time to deal with it; my son is coming home from his honeymoon tomorrow and he still doesn't know, for instance.
So here I am, on Kyprolis, dex, with a port-a-cath and juggling treatment infusion appointments plus my parent's medical stuff, dealing with fatigue that literally puts me in bed for two days out of the week, trying to figure out how to deal with my folks, my kids, my blood pressure, and the port itches!
And I still don't have a clue what all this treatment is supposed to do for me, since my blood tests still have me in remission. No M spike. Light chain ratio is 0.96.
I know that compared to so many of you who have had to deal with broken bones and collapsed vertebrae and such, I am extremely lucky. I know that. Please excuse me for whining. I just don't have a clue what's going on from here and I hate that.
No surprises. At that point it was, I can't say it was a 'new adventure,' exactly,' but it was a 'new challenge,' one that I figured I could 'gird up my loins' and deal with. The induction therapy, having to get dentures, cataract surgery – each step ended up with a 'bonus,' of sorts, you see. New teeth meant having a great smile for the first time in decades. Cataract surgery meant I could see!
Chemo plus transplant? Well, that got rid of all the plasma cells in the bone marrow, right? I went into three years of complete remission. So I had some mild side effects from Revlimid; so what? Nothing I couldn't handle.
I was doing just fine. The docs said I was doing just fine, and talking about many years, perhaps a decade or so, of remission.
Then I wanted to sing at my son's wedding, So when I got a cold I went to see the doc about emergency 'voice repair" and got hit by a freight train, I still feel that way, nearly a month later. Perhaps it's because I didn't have time to deal with it; my son is coming home from his honeymoon tomorrow and he still doesn't know, for instance.
So here I am, on Kyprolis, dex, with a port-a-cath and juggling treatment infusion appointments plus my parent's medical stuff, dealing with fatigue that literally puts me in bed for two days out of the week, trying to figure out how to deal with my folks, my kids, my blood pressure, and the port itches!
And I still don't have a clue what all this treatment is supposed to do for me, since my blood tests still have me in remission. No M spike. Light chain ratio is 0.96.
I know that compared to so many of you who have had to deal with broken bones and collapsed vertebrae and such, I am extremely lucky. I know that. Please excuse me for whining. I just don't have a clue what's going on from here and I hate that.
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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: I Survived 2 Years: What I've Learned
I don't think you were whining, Dianaiad. I have heard that "a trouble shared is a trouble halved". It does not burden us and it might help you to share, and it is hard to find people you can share with. You might not want to share with family because it might put extra burden on them.
I also know what you mean about trying to care for your parents when your own health is fragile. Here are some of the things I realized. I was trying to do too much for my parents. My Mother went into the nursing home about a year before I was diagnosed with multiple myeloma, and my Dad and I had about killed ourselves trying to care for her and keep her out of the nursing home. It sounds weird, but I felt guilty that I could not continue my pace! I had to quit teaching Sunday School for a couple of years, and I had to learn to tell my Dad that he has 4 daughters and we are all trying to help. Strangely, both of those were hard, because I was giving up a part of my self identity. I was always the strong one, the helper, etc. Now, I had to sit back and be one of the pack and not the one who was going to help or give as much.
Is there a way you can hire more help for your parents?
Cathy
I also know what you mean about trying to care for your parents when your own health is fragile. Here are some of the things I realized. I was trying to do too much for my parents. My Mother went into the nursing home about a year before I was diagnosed with multiple myeloma, and my Dad and I had about killed ourselves trying to care for her and keep her out of the nursing home. It sounds weird, but I felt guilty that I could not continue my pace! I had to quit teaching Sunday School for a couple of years, and I had to learn to tell my Dad that he has 4 daughters and we are all trying to help. Strangely, both of those were hard, because I was giving up a part of my self identity. I was always the strong one, the helper, etc. Now, I had to sit back and be one of the pack and not the one who was going to help or give as much.
Is there a way you can hire more help for your parents?
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
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