I was diagnosed with multiple myeloma 2 years ago. My hair has finally grown to a nice length and is fairly straight again, I weigh about 15 pounds less than I used to weigh before multiple myeloma (which is fun). I take meds etc, but the biggest impact from my last 2 years is invisible.
When I got multiple myeloma, it was the first time I truly accepted my mortality – the first time I realized I would die. 1000 times per day I looked up at God and asked, “Is this it?” “Will You catch me when I die?” “Is this your Will?” I would listen to Fernando Ortega when I woke in the night to still my racing heart. I was angry with God the father, but strangely, Jesus "came alive" to me. (I know that Jesus and the Father are one) I appreciated that Jesus suffered and died - He knew what it felt like to suffer and to die young and to leave unfinished business.
I had never understood why Jesus wept at the tomb of Lazarus - He knew He was going to raise Lazarus from the dead. But now I think Jesus wept to see the grieving of Lazarus’ sisters and Jesus knew that His own mother and disciples would grieve for Him in a week. Leaving your loved ones and knowing they will grieve and you will leave a hole in their lives is hard ... to know my husband would probably remarry (and I would want him to), to know I would not see my grandchildren grow up.
When I thought of dying, I didn’t want to see the grandkids because the thought of leaving them was too painful. The world was too beautiful and I would find tears running down my face at the thought of leaving it. I believe in heaven and have been a Christian for 30+ years, but even if I knew I was moving to Hawaii and would never return, it would be painful.
My husband and I had just built a new house and moved in 6 months before I was diagnosed – but I had to “let it go” in my heart. I had always assumed I would outlive my husband because I was healthy and he smoked. I had to let go and realize that he will probably be the one who will leave an inheritance to our children, not me.
There were things it was a relief to let go of, too – I had assumed too much responsibility for my aging parents – they thought I was going to be their savior and I found it a great relief that they could not rely on me so much. We had to find other sources of help.
I survived my BMT/SCT and people tell me I look the best I have looked in years – of course I looked the worst I ever looked in my life when I was on dex and when I was in hospital, but the biggest change is that I KNOW I am mortal. It isn’t a question of IF any of us will die, it is a question of WHEN.
I do what I can to prolong my remission – I am even doing a ketogenic diet right now -- but I hope when my end comes, I will have greater acceptance and be able to say, “If this is my time to go, it is my time to go.”
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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: Our mortality
I have always known I was going to die. I mean, we all do, but we don't really always accept it.
When I got my diagnoses, I was terrified. Maybe it was the fact that the doctors told me I was relatively young and healthy, and I would probably do well for a long time, but after about a week, I came into a much better state of mind. I do believe this will kill me, but it's going to take a while.
Even so, knowing I probably have 10 years left instead of 30 (I am 54), I have come to acceptance. I don't know quite how I got here. But it is my reality and I am OK with it. It makes me live each day with a little more appreciation, No one knows how much time they have. I intend to make the very best of what I have.
A few days ago, at the pool where I swim, a man died of a heart attack. He was 47. I hope his last days were good. I'm going to try to make sure mine are.
When I got my diagnoses, I was terrified. Maybe it was the fact that the doctors told me I was relatively young and healthy, and I would probably do well for a long time, but after about a week, I came into a much better state of mind. I do believe this will kill me, but it's going to take a while.
Even so, knowing I probably have 10 years left instead of 30 (I am 54), I have come to acceptance. I don't know quite how I got here. But it is my reality and I am OK with it. It makes me live each day with a little more appreciation, No one knows how much time they have. I intend to make the very best of what I have.
A few days ago, at the pool where I swim, a man died of a heart attack. He was 47. I hope his last days were good. I'm going to try to make sure mine are.
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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: Our mortality
I agree with you completely, Kim:
"I have come to acceptance. I don't know quite how I got here. But it is my reality and I am OK with it. It makes me live each day with a little more appreciation, No one knows how much time they have. I intend to make the very best of what I have."
"I have come to acceptance. I don't know quite how I got here. But it is my reality and I am OK with it. It makes me live each day with a little more appreciation, No one knows how much time they have. I intend to make the very best of what I have."
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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: Our mortality
You just know that when your GP phones you at home and says 'I have the results of your tests here and I need you to make an appointment to see me straight away' that its going to be bad news. Until that appointment I had never heard the word 'myeloma' and as he explained the condition to me, I read from one of his reference books he had open at the myeloma page. Prognosis '5 years' it said, I must have read it 20 times, the words didn't change.
As I left his clinic I was totally overwhelmed and in shock and doing mental arithmetic - 5 years, that's about 1800 days, and then there's chemo treatment to factor in, and the quality of life will taper off towards the end, it wont be sudden, so maybe I've only got a half that many 'good' days to live, about 900, that's just a 30 x 30 checkerboard, what will I do? How will I tell my worrier of a Mum? How will I tell my partner Jenny? I wont even outlive my dog, who's going to look after her? A thousand questions and not many answers.
When I got back home I made a cup of tea and sat down and as the shock eased a whole new attitude came over me. At least I now knew what I had to work with, I roughly knew the boundary and I could therefore time manage my life instead of drifting along wasting most of it in pointless ritual and denial, assuming the end was too far away to be concerned about as I'm sure a vast majority of people do.
Without deliberately making changes, I am noticing my lifestyle decisions are changing, I am eating a much better, healthier, tastier diet than the quick and cheap food I chose before. I give better advice from a new perspective than before, and I try to fill as much of each day with things that bring me and my loved ones pleasure. I stop and smell the roses. Now I have a good reason to cut out the wasted time from my life (like watching total garbage on TV) and do so without hesitation.
I now not only know but understand that I am mortal and I am going to die, and unless a car crash or heart attack or something else gets me first it will be multiple myeloma that kills me. Somehow it doesn't really matter, and whether it turns out that I have 1 year or 5 years or 25 years, I can now guarantee they will be good full satisfying years and will not be spent blindly following a lifetime's wasteful collected bad habits or wallowing in self-pity.
Somehow being forced to stare reality in the face has been a positive experience, though obviously it would have been better to have reached this mindset without having cancer.
As I left his clinic I was totally overwhelmed and in shock and doing mental arithmetic - 5 years, that's about 1800 days, and then there's chemo treatment to factor in, and the quality of life will taper off towards the end, it wont be sudden, so maybe I've only got a half that many 'good' days to live, about 900, that's just a 30 x 30 checkerboard, what will I do? How will I tell my worrier of a Mum? How will I tell my partner Jenny? I wont even outlive my dog, who's going to look after her? A thousand questions and not many answers.
When I got back home I made a cup of tea and sat down and as the shock eased a whole new attitude came over me. At least I now knew what I had to work with, I roughly knew the boundary and I could therefore time manage my life instead of drifting along wasting most of it in pointless ritual and denial, assuming the end was too far away to be concerned about as I'm sure a vast majority of people do.
Without deliberately making changes, I am noticing my lifestyle decisions are changing, I am eating a much better, healthier, tastier diet than the quick and cheap food I chose before. I give better advice from a new perspective than before, and I try to fill as much of each day with things that bring me and my loved ones pleasure. I stop and smell the roses. Now I have a good reason to cut out the wasted time from my life (like watching total garbage on TV) and do so without hesitation.
I now not only know but understand that I am mortal and I am going to die, and unless a car crash or heart attack or something else gets me first it will be multiple myeloma that kills me. Somehow it doesn't really matter, and whether it turns out that I have 1 year or 5 years or 25 years, I can now guarantee they will be good full satisfying years and will not be spent blindly following a lifetime's wasteful collected bad habits or wallowing in self-pity.
Somehow being forced to stare reality in the face has been a positive experience, though obviously it would have been better to have reached this mindset without having cancer.
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MattSchtick - Name: Andy
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Feb27 2014
- Age at diagnosis: 61
Re: Our mortality
Yes, Andy, so well said. I feel that way too.
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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: Our mortality
Wow, I can relate - especially the strange things like thinking you might not outlive your dog and wondering who will care for her. I agree with you about how life is sweeter and I share your determination not to waste my time with stupid TV. I used to feel I had to work 40 hours per week, but now, every time my grandchildren come to town, I take the time off work to spend with them.
Time is precious, and smells are sweeter, I also try to savor my meals and appreciate all the good that comes my way. One of my favorite things is sitting outside to have a cup of coffee on the summer weekends. I also love to walk in my neighborhood in the morning - and see all the different things people do with their yards and gardens.
It sounds like you came to the stage of acceptance faster than I did. It seems like I was in shock for a month and then in denial for a month and then in grief for a month and I was afraid a lot. Finally there is the peace of acceptance. Any time I feel self pity, I remind myself that everyone is going to die. Death is not optional for anyone - that is "looking reality in the face" as you say.
We don't know what other people are dealing with, but I know everyone has burdens of one kind or another. I have much more compassion for the frail old people I see every day. I suspect they are thinking some of the same thoughts of mortality that we are.
Thank you for writing!
Time is precious, and smells are sweeter, I also try to savor my meals and appreciate all the good that comes my way. One of my favorite things is sitting outside to have a cup of coffee on the summer weekends. I also love to walk in my neighborhood in the morning - and see all the different things people do with their yards and gardens.
It sounds like you came to the stage of acceptance faster than I did. It seems like I was in shock for a month and then in denial for a month and then in grief for a month and I was afraid a lot. Finally there is the peace of acceptance. Any time I feel self pity, I remind myself that everyone is going to die. Death is not optional for anyone - that is "looking reality in the face" as you say.
We don't know what other people are dealing with, but I know everyone has burdens of one kind or another. I have much more compassion for the frail old people I see every day. I suspect they are thinking some of the same thoughts of mortality that we are.
Thank you for writing!
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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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