I believe that you live life at the fullest when you can forget about yourself. But that is not possible anymore.
I recently had a flashback. I was in an airport, about to visit a new city abroad. I looked around with curiosity at the writings, at the adverts, at the people to see how they were dressed. I planned in my head my moves: how to get to the hotel, what I would visit the next day, what friends I would see again…I was totally absorbed in life and I did not think about myself.
While reasoning about my flashback I realized that you truly enjoy life when you are free from big worries and can go with the flow.
Since the day of the diagnosis that has not been possible for me anymore, even when I was exploding from energy during my remission. In those two years I succeeded twice, for about one hour each time, in feeling active and relaxed at the same time like in the old times. One time I was playing cards with friends (but only that one time) and the other one there was a sweet festival in the little village where I live. Aside from those times, the awareness of being in a bad situation is always there somewhere.
Some of you don’t view it this way, some are even grateful for having a disease. Maybe I have the European more pessimistic view, but I do have nostalgia for the times in which doing something pleasant corresponded to feeling relaxed and not, somehow, forced to be self obsessed.
Forums
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Living life - before and after the diagnosis
Dear Annamaria,
I know what you mean about being self obsessed. Maybe it's a self preservation response. After all if we are not thinking of our selves we would not endure the medication and treatments. If we were selfless we would not want to put anyone out and simply die.
I feel no guilt anymore about putting my self first. It is not all the time as my young children still need and deserve to be put first. However there are times of exhaustion and illness where I, (how can I put this) don't care for anyone else, my focus is all about me. Either getting better or getting rest or whatever it is that I need to do. Yes I, I, I.
And yes my happiest times are when even if for a moment we can forget that we are ill. That is why I have conciously banned myself from this site six days a week. So that I am not living breathing myeloma so much. But it is hard to forget or put to the back of your mind.
Nothing is as it was. Extra cautious in many things. All in the chase for living a little longer.
I have found myself giving myself little things to reach for, But plan nothing more then six months ahead. Like weekend trips, or holidays away. At the moment it is my goal to finish building my new home. I find setting goals or looking forward to something helps refocus my attentions even if for an hour or two hear and there.
I recall for the first year or so after diagnosis my first thought when I woke was Myeloma. I can honestly say that now more often then not my first thought is "MMM what do I have on today? Life goes on.
Probably have not helped you at all. Maybe you are a little depressed and can't get out of the dark. Do you have someone that you can talk too?
As for being in a bad situation, Yes we are however we are still breathing, we have had something of a life. When I feel sad for myself I think of all the children with cancer who will never live as I have. This thought usually snaps me out of any self pity.
I hope you can find some distractions
Yours Vicki
I know what you mean about being self obsessed. Maybe it's a self preservation response. After all if we are not thinking of our selves we would not endure the medication and treatments. If we were selfless we would not want to put anyone out and simply die.
I feel no guilt anymore about putting my self first. It is not all the time as my young children still need and deserve to be put first. However there are times of exhaustion and illness where I, (how can I put this) don't care for anyone else, my focus is all about me. Either getting better or getting rest or whatever it is that I need to do. Yes I, I, I.
And yes my happiest times are when even if for a moment we can forget that we are ill. That is why I have conciously banned myself from this site six days a week. So that I am not living breathing myeloma so much. But it is hard to forget or put to the back of your mind.
Nothing is as it was. Extra cautious in many things. All in the chase for living a little longer.
I have found myself giving myself little things to reach for, But plan nothing more then six months ahead. Like weekend trips, or holidays away. At the moment it is my goal to finish building my new home. I find setting goals or looking forward to something helps refocus my attentions even if for an hour or two hear and there.
I recall for the first year or so after diagnosis my first thought when I woke was Myeloma. I can honestly say that now more often then not my first thought is "MMM what do I have on today? Life goes on.
Probably have not helped you at all. Maybe you are a little depressed and can't get out of the dark. Do you have someone that you can talk too?
As for being in a bad situation, Yes we are however we are still breathing, we have had something of a life. When I feel sad for myself I think of all the children with cancer who will never live as I have. This thought usually snaps me out of any self pity.
I hope you can find some distractions
Yours Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Living life - before and after the diagnosis
Hi Anna,
I'm with Vicki about getting out and living life and have also been avoiding the Beacon a little for the same reasons!
You are right that having multiple myeloma is something that is difficult to stop thinking about, and it can sneak in and ruin happy moments which can get you down a little.
It is hard to find people who understand how you feel sometimes and even my partner can't understand why I don't want to plan for my retirement. I don't even know if I will have one! Psychological support is a problem as everyone seems to be living their lives and sometimes I feel left behind. I'm training for a swim and a bike challenge but when I get sick it's back to the start and really hard to catch up with my fit friends as muscle still seems to disappear when not exercising.
I have stopped maintenance treatment due to side effects and now I'm not so good at taking tablets it almost feels good when I realise I've forgotten to take them. I don't feel so obsessed!
But I set goals, am more aware of living a healthier life than before and try not to beat myself up when life falls off the rails.
Maybe you are not pessimistic, maybe when you were diagnosed and evaluated your life it was pretty good and there wasn't much you wished you could do better. But I see this as my chance to change the things that didn't make me happy and get on with living.
I agree with Vicki that there are people out there who are worse off which motivates me and will continue to do so as long as I am breathing. But if you are feeling it is getting you down and you are having more bad days than good, you might need a bit of help.
Jen
I'm with Vicki about getting out and living life and have also been avoiding the Beacon a little for the same reasons!
You are right that having multiple myeloma is something that is difficult to stop thinking about, and it can sneak in and ruin happy moments which can get you down a little.
It is hard to find people who understand how you feel sometimes and even my partner can't understand why I don't want to plan for my retirement. I don't even know if I will have one! Psychological support is a problem as everyone seems to be living their lives and sometimes I feel left behind. I'm training for a swim and a bike challenge but when I get sick it's back to the start and really hard to catch up with my fit friends as muscle still seems to disappear when not exercising.
I have stopped maintenance treatment due to side effects and now I'm not so good at taking tablets it almost feels good when I realise I've forgotten to take them. I don't feel so obsessed!
But I set goals, am more aware of living a healthier life than before and try not to beat myself up when life falls off the rails.
Maybe you are not pessimistic, maybe when you were diagnosed and evaluated your life it was pretty good and there wasn't much you wished you could do better. But I see this as my chance to change the things that didn't make me happy and get on with living.
I agree with Vicki that there are people out there who are worse off which motivates me and will continue to do so as long as I am breathing. But if you are feeling it is getting you down and you are having more bad days than good, you might need a bit of help.
Jen
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Living life - before and after the diagnosis
I've always believed that anyone can choose to be worried, have anxiety or be depressed about their problems in life or you can live with those problems and choose to make the best of whatever "bad" situation you find yourself in.
I have multiple myeloma. It is what it is and I've accepted it. I have chosen not to make it the definition of the rest of my life, however long that might be. I never go more than a few hours without thinking about it. But I will not let it ruin the rest of my life with anxiety, worry and depression. It's a choice...at least for me anyway.
Edited later: I have to qualify the above statements. So far, I've had a fairly easy go of it with my multiple myeloma with few physical side effects and so it might be easier for me than others with more physical problems to avoid feeling down. So I'm sorry if my statements above might have sounded like it's should be easy for everyone to avoid feelings of anxiety and depression.
I have multiple myeloma. It is what it is and I've accepted it. I have chosen not to make it the definition of the rest of my life, however long that might be. I never go more than a few hours without thinking about it. But I will not let it ruin the rest of my life with anxiety, worry and depression. It's a choice...at least for me anyway.
Edited later: I have to qualify the above statements. So far, I've had a fairly easy go of it with my multiple myeloma with few physical side effects and so it might be easier for me than others with more physical problems to avoid feeling down. So I'm sorry if my statements above might have sounded like it's should be easy for everyone to avoid feelings of anxiety and depression.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Living life - before and after the diagnosis
I never really think about. It is not my life.
It is something I can easily compartmentalize. I think about it when I take a subway ride to the hospital once a month to get blood tests and get the maintenance drug Lenalidomide. I do take it daily, but perhaps 75% of adult Americans take something everyday - blood pressure meds, or cholesterol fighting pills, or baby aspirin or whatever else. And a higher percentage that than have a daily maintenance routine - brushing their teeth, shaving, etc. So I don't see myself as much different than most anyone else.
Is it wrong to compare cancer maintenance drugs to brushing teeth? Not for me. It is simply something I need to do everyday to maintain optimum health.
I read the Beacon for amusement and entertainment and if some education rubs off, great. But I know what I can and can't do. An accountant does my taxes as I suck at math. A tailor takes on (or lets out!) my clothes as I can't sew. A plumber fixes my clogged drain as I don't know how. And a doctor can worry about finding a cure and helping me along with my multiple myeloma.
It is something I can easily compartmentalize. I think about it when I take a subway ride to the hospital once a month to get blood tests and get the maintenance drug Lenalidomide. I do take it daily, but perhaps 75% of adult Americans take something everyday - blood pressure meds, or cholesterol fighting pills, or baby aspirin or whatever else. And a higher percentage that than have a daily maintenance routine - brushing their teeth, shaving, etc. So I don't see myself as much different than most anyone else.
Is it wrong to compare cancer maintenance drugs to brushing teeth? Not for me. It is simply something I need to do everyday to maintain optimum health.
I read the Beacon for amusement and entertainment and if some education rubs off, great. But I know what I can and can't do. An accountant does my taxes as I suck at math. A tailor takes on (or lets out!) my clothes as I can't sew. A plumber fixes my clogged drain as I don't know how. And a doctor can worry about finding a cure and helping me along with my multiple myeloma.
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tmcd - Name: TMcD
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Oct 2014
- Age at diagnosis: 52
Re: Living life - before and after the diagnosis
After reading your note, I found some similarity with how you felt and feel. For me, there is nothing good about this disease. I want my life back and know I can't get it.
But there are things I found I could do to at least get me into the ring to fight the 800 pound opponent and get some life back. My philosophy became that. if the treatment prevented me from living, what is the point of the treatment? I was diagnosed 8 year ago at 60, though had symptoms at 59. Bone damage, height loss, CRAB, etc. One year of hell - chemo and bone marrow transplant. During that period I felt the the disease, the doctors, and the treatments completely controlled me and I hated it.
Self- obsessed? Yes. I wanted my life back, plain and simple, but knew the old life was over. Depressed? You betcha.
The question became, what would the 800 pound opponent give back, and how do I get it. I decided to learn everything I could about the disease, the goal being that, though the disease controlled me, I could try to control my treatment to get as much of my life back as possible.
I read every abstract from the ASH and ASCO meetings. Listened in to summaries about the conferences. I became knowledgeable enough to interpret my own test results and a couple of times told my oncologist what he was thinking. I have discovered one truth – if you ask 10 myeloma doctors for an opinion, you will probably get 7 or 8 different answers.
How successful have I been? You judge. I negotiated the lowest possible dose, not the recommended dose. for maintenance and it worked for 5 years. During that time. married off my daughter, have seen and played with 3 grandchildren, visited a number of national parks and mMonuments, etc. Did I get my life back? NO!! Did I still have cancer inside me? YES!!! But I was able to live. The opponent was still there, waiting and I knew it.
Finally, last fall my nemesis decided to throw me sucker punch and in the spring I had to resume treatment. I am hopefully finishing a clinical trial checking dosage on an already approved drug. Once again - no life. Summer trip cancelled. Couldn't travel, etc. But, if all goes well in two weeks, I plan to negotiate my maintenance treatment again so I can live. Can I pull it off, who knows?
Self obsessed - look at all of the "I"s above. Adamant? YES!! (This note has been written after 20 mg of dex this morning.)
But there are things I found I could do to at least get me into the ring to fight the 800 pound opponent and get some life back. My philosophy became that. if the treatment prevented me from living, what is the point of the treatment? I was diagnosed 8 year ago at 60, though had symptoms at 59. Bone damage, height loss, CRAB, etc. One year of hell - chemo and bone marrow transplant. During that period I felt the the disease, the doctors, and the treatments completely controlled me and I hated it.
Self- obsessed? Yes. I wanted my life back, plain and simple, but knew the old life was over. Depressed? You betcha.
The question became, what would the 800 pound opponent give back, and how do I get it. I decided to learn everything I could about the disease, the goal being that, though the disease controlled me, I could try to control my treatment to get as much of my life back as possible.
I read every abstract from the ASH and ASCO meetings. Listened in to summaries about the conferences. I became knowledgeable enough to interpret my own test results and a couple of times told my oncologist what he was thinking. I have discovered one truth – if you ask 10 myeloma doctors for an opinion, you will probably get 7 or 8 different answers.
How successful have I been? You judge. I negotiated the lowest possible dose, not the recommended dose. for maintenance and it worked for 5 years. During that time. married off my daughter, have seen and played with 3 grandchildren, visited a number of national parks and mMonuments, etc. Did I get my life back? NO!! Did I still have cancer inside me? YES!!! But I was able to live. The opponent was still there, waiting and I knew it.
Finally, last fall my nemesis decided to throw me sucker punch and in the spring I had to resume treatment. I am hopefully finishing a clinical trial checking dosage on an already approved drug. Once again - no life. Summer trip cancelled. Couldn't travel, etc. But, if all goes well in two weeks, I plan to negotiate my maintenance treatment again so I can live. Can I pull it off, who knows?
Self obsessed - look at all of the "I"s above. Adamant? YES!! (This note has been written after 20 mg of dex this morning.)
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dcsilv
Re: Living life - before and after the diagnosis
I am the caregiver to my daughter who was diagnosed in January 2012. From that day, my thoughts and worries have been consumed with myeloma every day. Even after her stem cell transplant (SCT), I could not stop myself from scanning for information.
Her relapse 15 months after the SCT made it even worse. In and out of the hospital, new treatments, some that didn't work, plasmacytomas, emergency tracheotomy, chest tube for fluid in the lungs, and now the disease is in her spine. T cell therapy, which they have started recruiting for, was our hope, but now because of her poor condition she is knocked out of that.
She is 36. This is no life. Of course we all wish for the life before the disease, but now I am just wishing for her life to be like it was 3 months ago.
Her relapse 15 months after the SCT made it even worse. In and out of the hospital, new treatments, some that didn't work, plasmacytomas, emergency tracheotomy, chest tube for fluid in the lungs, and now the disease is in her spine. T cell therapy, which they have started recruiting for, was our hope, but now because of her poor condition she is knocked out of that.
She is 36. This is no life. Of course we all wish for the life before the disease, but now I am just wishing for her life to be like it was 3 months ago.
Re: Living life - before and after the diagnosis
This is such a huge topic. I've been struggling with this - in hand to hand combat - Every. Single. Day. since diagnosis. I could write a book. Maybe I will! I can't even begin to summarize my experience here. It's too all-consuming, and I'd still be sitting in this chair tonight, not ever having brushed my teeth today!
You hit a target on the nose!
You hit a target on the nose!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Living life - before and after the diagnosis
I agree with TracyJ's comment that this is a huge topic. Amen!
It's very interesting to read the wide range of comments here. Some people whose lives have been turned upside down by multiple myeloma. But some others like tmcd and DallasGG who have been able to "compartmentalize" the myeloma experience, as tmcd put it so well.
I remember someone's post in the Beacon from a couple years ago asking when - and more pointedly, if - she would be able to get up in the morning and not have multiple myeloma be the first thing she thought about. That question struck a chord with me at that time because of all I was going through then myself.
But I'm happy to say that on most days now I think of something else when I wake up - not multiple myeloma. It's great to be in a position where my treatment is going well enough that I can say that! I know many people are not in that position, as DallasGG mentioned in his PS on this thread.
I've been struggling to balance my "new normal" life and my multiple myeloma experience. There are many things I do that are not myeloma-related. I want to keep doing them while I can. But at the same time, I feel a responsibility to do what I can to help other myeloma patients and cancer patients. Since I am in relatively good health now, take advantage of that to do some good. But I don't want to dive in so deeply that myeloma or cancer begins to define who I am.
I'm still trying to find the right way to deal with this conflict inside my head. I feel like there is more I should be doing to help, but I'm still not sure what the right avenue is. I'm not real politically active, so the advocacy thing doesn't appeal to me very much. I also am not a big fund raiser type. I really enjoy listening to people and sharing experiences. That's why the Beacon forum appeals to me so much. I also have enjoyed the couple of face-to-face myeloma patient conferences I've attended, especially because of the chance to talk with other patients.
I guess I've gotten off topic a little bit here with my rambling. But I welcome any suggestions folks might have about ways to do more to "give back" while I can.
Mike
P.S. TracyJ - write that book! I would love to read it. You have a unique perspective to share.
It's very interesting to read the wide range of comments here. Some people whose lives have been turned upside down by multiple myeloma. But some others like tmcd and DallasGG who have been able to "compartmentalize" the myeloma experience, as tmcd put it so well.
I remember someone's post in the Beacon from a couple years ago asking when - and more pointedly, if - she would be able to get up in the morning and not have multiple myeloma be the first thing she thought about. That question struck a chord with me at that time because of all I was going through then myself.
But I'm happy to say that on most days now I think of something else when I wake up - not multiple myeloma. It's great to be in a position where my treatment is going well enough that I can say that! I know many people are not in that position, as DallasGG mentioned in his PS on this thread.
I've been struggling to balance my "new normal" life and my multiple myeloma experience. There are many things I do that are not myeloma-related. I want to keep doing them while I can. But at the same time, I feel a responsibility to do what I can to help other myeloma patients and cancer patients. Since I am in relatively good health now, take advantage of that to do some good. But I don't want to dive in so deeply that myeloma or cancer begins to define who I am.
I'm still trying to find the right way to deal with this conflict inside my head. I feel like there is more I should be doing to help, but I'm still not sure what the right avenue is. I'm not real politically active, so the advocacy thing doesn't appeal to me very much. I also am not a big fund raiser type. I really enjoy listening to people and sharing experiences. That's why the Beacon forum appeals to me so much. I also have enjoyed the couple of face-to-face myeloma patient conferences I've attended, especially because of the chance to talk with other patients.
I guess I've gotten off topic a little bit here with my rambling. But I welcome any suggestions folks might have about ways to do more to "give back" while I can.
Mike
P.S. TracyJ - write that book! I would love to read it. You have a unique perspective to share.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Living life - before and after the diagnosis
I can relate to all the ill effects from the meds I'm required to take.
Since diagnosis and treatment, I came close to death from a virus that left me 30 lbs (14 kg) lighter and with severe neuropathy in my feet. Then, after recovering, I was so weak it kept me pretty much homebound, especially since winter was coming. My wife isn't one to stand by and watch me decline, and planned last winter in the warm. I probably got half my strength back, and was able to get the work around the house done – a lot slower than normal, but done.
Before treatment, I played basketball and softball, and rode my bike, longest ride 34 miles (55 km). I can go about nine miles now. My wife thinks my strength is about the same as hers now, which isn't far off.
We walked five miles on rails to trails last Sunday and I had torn the skin off both balls of my feet and didn't realize it because of the neuropathy. So I was on the couch for a week, being cautious of infection.
I could go on, but NO, I rarely think about multiple myeloma, I go on with my life – maybe a little slower than before, but I do what I want regardless. When the physical impairments progress to the point where I can't be me or become a burden, I'll decide my options. No, this disease will never be my master.
My advice: Live your life. Tere are always people, especially children, worse off than us. Hell, you could get hit by a bus tomorrow.
Since diagnosis and treatment, I came close to death from a virus that left me 30 lbs (14 kg) lighter and with severe neuropathy in my feet. Then, after recovering, I was so weak it kept me pretty much homebound, especially since winter was coming. My wife isn't one to stand by and watch me decline, and planned last winter in the warm. I probably got half my strength back, and was able to get the work around the house done – a lot slower than normal, but done.
Before treatment, I played basketball and softball, and rode my bike, longest ride 34 miles (55 km). I can go about nine miles now. My wife thinks my strength is about the same as hers now, which isn't far off.
We walked five miles on rails to trails last Sunday and I had torn the skin off both balls of my feet and didn't realize it because of the neuropathy. So I was on the couch for a week, being cautious of infection.
I could go on, but NO, I rarely think about multiple myeloma, I go on with my life – maybe a little slower than before, but I do what I want regardless. When the physical impairments progress to the point where I can't be me or become a burden, I'll decide my options. No, this disease will never be my master.
My advice: Live your life. Tere are always people, especially children, worse off than us. Hell, you could get hit by a bus tomorrow.
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