How to describe it. I am not a poet or an author who has the facility of words to describe something like heartache which makes it hard to breathe sometimes. I am not sure anyone else but those who have gone through the same pain can really describe it. I usually cant talk to people about my feelings and I am not someone who likes to share but I need to talk. My pain needs to be heard.
My mother, my wonderful, ever loving, ever giving, without a harsh word for anyone mother, was diagnosed with cancer a little over a year ago. It was multiple myeloma. She was having severe pain that was only controlled with heavy medication. They initially started her out on an oral treatment but unfortunately it didn’t work, they had to go to chemo. I guess I was the closest to my mom amongst my brothers and sisters as I was available to help her by going with her to all her appointments, also staying with her whenever she was admitted to the hospital for chemo or sickness. I being a doctor myself knew the situation but whenever she would ask I would tell her she was getting better, whatever problem there was it was a minor setback and soon she would be better. She was a simple person in the sense she was honest and believed whatever I would tell her. After multiple rounds of chemo and a stem cell transplant they said she was in remittance. You should have seen the joy in her face the happiness on hearing the news. A few months later it was back and even worse. The pain which never had really gone away but had just been controlled became worse. It had come to the point where she was spending most of her day in a sofa at home, she didn’t want to go to her room so she would be lying in the sofa amongst the kids and the noise trying to be with the family in whatever way she could. The pain was horrendous sometimes to the paint beyond control and all I could say was Mom your going to get better. I lied to her again and again.
They were giving her 2-3 months more time and all I could tell her we will find a way, you will get better. The pain got worse as the days went by and her meds were increased but it never seemed to be enough. Every time she took enough for the pain she felt woozy and unable to think clearly which she didn’t like. Her multiple myeloma in a span on 1 year and 2 months had progressed from low grade multiple myeloma to plasma cell leukemia which has no real cure and is a very aggressive and deadly disease. Her cancer had spread throughout her body uncontrollably and no treatment was working.
The last month she was in and out of the hospital. She was having trouble breathing the last time, they said it was the flu. My family fought bitterly regarding putting her on a ventilator if it came to that and finally for the sake of my younger brother we said we would but if her heart stopped we wouldn’t do any heroic measures. She was with us, coherent and though in pain able to talk and interact with us for 2 days in the hospital, then due to all the pain meds and everything going on she lost consciousness and had to be put on a BiPaP machine which helps a person breath but is not as invasive or as good as a ventilator but has the good aspect where you can take a person off of it easily unlike a ventilator which we knew if she went on one there was no way we would be able to wean her off of it. 3 days she was on the BiPaP before her heart just gave up. She died at 5 in the morning with all of the family surrounding her but she had not opened her eyes since she has lost consciousness. I was desolate.
3 months later I still come home with the thought in the back of my mind that she would be there on the sofa and would say hello to me when I came in. I still think she will be there when I go to my dad’s room looking through her stuff. She never is. Every time we sit for dinner I miss her. Every time we get together I miss her. Every time I walk out my door and look at our lawn and garden which were her babies I miss her. I still feel her arms around me with her hands in my hair saying it’s going to be Ok. I had a dream last night of her. She was sitting up in the sofa and I was with her with my head in her lap and I was crying saying mommy I miss you so much, I love you and I miss you. She was saying to me " I love you too my son it’s going to be OK". How is it going to be OK when my mother is gone? She never was able to have the easy life always working hard staying busy and she died at the age of 59. When I see old people I get angry WHY WHY did my poor mother have to die so young while many live into their 80s and 90s? I am sitting here crying on my laptop trying to work but my heart aches and life goes on.
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A son's story of his mother with multiple myeloma
Last edited by nasim on Tue Jun 04, 2013 1:30 pm, edited 1 time in total.
Re: A son's story of his mother with multiple myeloma
I read your touching post and the sadness you are experiencing over your terrible loss, is palpable. Allow yourself the gift of time and grieve as you need to.
I am a 58 year old, waiting to see an oncologist to see if I have MGUS or multiple myeloma, as a I also have sarcoidosis which can cause anemia and renal dysfunction, so we need to get a BMB done. I am praying like crazy that it is MGUS and will remain that way. I am petrified to go through what your Mom did so bravely.
Life isn't fair. Your Mom was much too young to pass away at 59, never mind suffering so much pain. I also lost a most beloved mother at a young age to an auto immune disease, so I do fully understand what you are going through. I got through it by telling myself that Mom was finally free of her awful suffering and pain, and that her spirit could be wherever it wished. It is only our bodies that fade away and die, but the soul ( if you believe this), is eternal.
Your Mom will live on in you and your siblings. Her memory will forever be a blessing to you all, and in time, you will be able to move on and get on with your life, the way she would have wanted for you to do.
There is no right or wrong way to grieve, and no one can set a time on how long you will feel deep grief, but , if after a while, you are still overwhelmed and not coping, do not be afraid to seek grief counselling to give you coping mechanisms, and to move forward.
Once again, my deepest sympathy to you and yours, and may your broken heart mend in time as you carry within you the wonderful memories of your mother , always.
I wish you strength and peace at this most difficult time.
Kas in Canada
I am a 58 year old, waiting to see an oncologist to see if I have MGUS or multiple myeloma, as a I also have sarcoidosis which can cause anemia and renal dysfunction, so we need to get a BMB done. I am praying like crazy that it is MGUS and will remain that way. I am petrified to go through what your Mom did so bravely.
Life isn't fair. Your Mom was much too young to pass away at 59, never mind suffering so much pain. I also lost a most beloved mother at a young age to an auto immune disease, so I do fully understand what you are going through. I got through it by telling myself that Mom was finally free of her awful suffering and pain, and that her spirit could be wherever it wished. It is only our bodies that fade away and die, but the soul ( if you believe this), is eternal.
Your Mom will live on in you and your siblings. Her memory will forever be a blessing to you all, and in time, you will be able to move on and get on with your life, the way she would have wanted for you to do.
There is no right or wrong way to grieve, and no one can set a time on how long you will feel deep grief, but , if after a while, you are still overwhelmed and not coping, do not be afraid to seek grief counselling to give you coping mechanisms, and to move forward.
Once again, my deepest sympathy to you and yours, and may your broken heart mend in time as you carry within you the wonderful memories of your mother , always.
I wish you strength and peace at this most difficult time.
Kas in Canada
Re: A son's story of his mother with multiple myeloma
@ Kas in Canada
Thank you for your kind words. I can honestly say though that there are good days and then there are bad days. Somedays I miss her so much I feel like a weight is on my chest. Somedays I miss her but I can think of all the good times we had and smile .
My mom also initially had MGUS for 5 years, but when she was diagnosed with multiple myeloma and they did a FISH they found 3 mutations which is the reason why her disease progressed so fast and was so resistant to treatment. Here's hoping whatever it is you have is easy and treatable.
As to my mom being free from the pain and suffering I know it and I hear it from many people but always I have this pang of selfishness and wish she was still here. I know she is in a better place and one day I will see her again but it just hurts. Maybe its because this is my first experience with a death of someone near, maybe its just because I was so close to her with all the time I was with her during her sickness and maybe its because of all she went through all the pain and suffering. I just wish she was here and I can somehow make up for all the times i made her unhappy before, all the times i hurt her in my careless and unthinking ways.
My 3 yr old son the other day made a mess in the kitchen and his mother called him a "bad boy". He came to me and said "Dada (he calls me dada and his mother mamay) mamay no be nice to me, where is mommy (he used to call my mother mommy because all of us did and thats the name he picked up, my mother loved it and said it was better than being called grandma). I told him she was sick and went away to god. He cried and said "tell her to come back" . I ended up crying with with him saying I wish I could.
Thank you for your kind words. I can honestly say though that there are good days and then there are bad days. Somedays I miss her so much I feel like a weight is on my chest. Somedays I miss her but I can think of all the good times we had and smile .
My mom also initially had MGUS for 5 years, but when she was diagnosed with multiple myeloma and they did a FISH they found 3 mutations which is the reason why her disease progressed so fast and was so resistant to treatment. Here's hoping whatever it is you have is easy and treatable.
As to my mom being free from the pain and suffering I know it and I hear it from many people but always I have this pang of selfishness and wish she was still here. I know she is in a better place and one day I will see her again but it just hurts. Maybe its because this is my first experience with a death of someone near, maybe its just because I was so close to her with all the time I was with her during her sickness and maybe its because of all she went through all the pain and suffering. I just wish she was here and I can somehow make up for all the times i made her unhappy before, all the times i hurt her in my careless and unthinking ways.
My 3 yr old son the other day made a mess in the kitchen and his mother called him a "bad boy". He came to me and said "Dada (he calls me dada and his mother mamay) mamay no be nice to me, where is mommy (he used to call my mother mommy because all of us did and thats the name he picked up, my mother loved it and said it was better than being called grandma). I told him she was sick and went away to god. He cried and said "tell her to come back" . I ended up crying with with him saying I wish I could.
Re: A son's story of his mother with multiple myeloma
I am so so sorry. Your post was so hard to read. My mom is going through myeloma and although 73, she is young. Or should I say was. Her exact diagnosis is extramedullary multiple myeloma with plasmablastic features. In other words, very poor prognosis and doctors know so little, that is is frustrating.
In the space of 4 months since diagnosis we have watched the pain come, the sleepless nights, the loss of appetite and therefore weight. We have watched her face filled with hope, and now ever increasingly filled with discouragement. They say the numbers look good! But she feels horrible. If you give enough pain meds to control pain, she is not "present" in life.
I cannot imagine the day when she is not here. I cannot conceive of her not being somewhere on this earth. I would give anything, do anything; to make this better.
I am so so sorry.
Kirsten
In the space of 4 months since diagnosis we have watched the pain come, the sleepless nights, the loss of appetite and therefore weight. We have watched her face filled with hope, and now ever increasingly filled with discouragement. They say the numbers look good! But she feels horrible. If you give enough pain meds to control pain, she is not "present" in life.
I cannot imagine the day when she is not here. I cannot conceive of her not being somewhere on this earth. I would give anything, do anything; to make this better.
I am so so sorry.
Kirsten
Re: A son's story of his mother with multiple myeloma
@kirsten I am sorry to hear about your mothers diagnosis and I can say that we have also gone through the same hope then discouragement. Its not easy. As for the pain that was the same exact problem for my mom near the end she was on 16mg of Dilaudid while also using the Fentanyl patch 300 mcg. It was barely enough she would still be in pain but it would be tolerable. If she tried any higher she would be dazed and confused. She said herself "whats the use of living if I am not really here?". You have to find the balance that works for you. I recommend looking into a pain management doctor and see if he can do anything. There are many ways to treat pain and who knows what might be the correct way for your mom.
More than anything else I can say treasure your time with her. Do everything you can for her. I swear to you it may seem hard and tiring now but when she is gone that will be the only thing that gives you some peace. My brother who just couldnt take the time off or juggle his schedule to make the time regrets that more than anything else, No one blames him and we all told him that he did what he could but he blames himself and wishes he did more.
Im not sure if this would help but for me I used to take videos of her just talking to me and i keep them with me as a reminder. I have one where she was talking to me and a few of my brothers and she was like "I love all of you and I only wish you happiness. Take care of each other and always stay close to your family". That video though painful to watch now is worth more to us than gold. Try to make those memories before they are too late.
You have my heartfelt prayers, I wish you and your mom happiness and health and again treasure your time with her.
More than anything else I can say treasure your time with her. Do everything you can for her. I swear to you it may seem hard and tiring now but when she is gone that will be the only thing that gives you some peace. My brother who just couldnt take the time off or juggle his schedule to make the time regrets that more than anything else, No one blames him and we all told him that he did what he could but he blames himself and wishes he did more.
Im not sure if this would help but for me I used to take videos of her just talking to me and i keep them with me as a reminder. I have one where she was talking to me and a few of my brothers and she was like "I love all of you and I only wish you happiness. Take care of each other and always stay close to your family". That video though painful to watch now is worth more to us than gold. Try to make those memories before they are too late.
You have my heartfelt prayers, I wish you and your mom happiness and health and again treasure your time with her.
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