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Anxious - need insight
My husband was diagnosed with multiple myeloma on February 26th of this year, 7 days before his 43rd birthday. He started having debilitating back pain on December 16, 2012, but it took kidney failure (with a subsequent hospitalization) and my persistence with his various physicians to get him diagnosed. The last 9 months have been a living nightmare for us. We're a fairly young couple and had everything going for us. Great jobs - ready to start a family. Then BAM - it was all over in the blink of an eye. Being told your husband's prognosis is only 7-8 years, even with treatment, was devastating to both of us. He had 3 months of chemotherapy (Mar-June) followed by an autogulous stem cell transplant on July 25th at the University of Florida in Gainesville. His first follow up appointment with his UF Oncologist (since his transplant) is on September 30th. We have somewhat resumed normal life since his release from the hospital. That has been a brief and much needed relief for us both. He seems to be recovering well with minimal issues, however he has not been able to return to work due to his pain/walking issues from numerous (8) vertebra fractures and (over 20) bone lesions. Over the last few days my husband has started experiencing some anxiousness and depression post transplant. I have also become quite anxious about his mental health, remission status, prognosis and what the next steps are. No one has communicated the next steps with us since his release from the hospital last month and I think reading articles I’m finding online isn’t helping my emotional well-being. Can anyone give me some insight as to what to expect next?
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cocoloco - Name: cocoloco
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: February 26, 2013
- Age at diagnosis: 42
Re: Anxious - need insight
We all get anxious and depressed dealing with all this. I think the primary reason is lack of information. I'd fault your transplant doc for not giving you details on what the next steps are after the transplant. My doc told me that the results of the bone marrow biopsy (post transplant) along with the blood work would direct him to choose one of two paths. He explained those to me and my wife in detail but gave us no prognosis.
All of us pester the docs for the same answer; how long do we have left? They can't give us that answer because the disease is so complicated and statistics don't give you a present day prognosis for you personally given your particular disease attributes.
I don't believe what your husband is going through is unusual, in fact my doc is very concerned about that aspect of depression and wants to take care of it with drugs if it becomes a ongoing problem. And its not just him, you too are facing many challenges that may cause you to get depressed and need assistance. Its as much about the care giver as it is the patient.
For me the depression and most of the anxiety stopped when I finally realized the plans that were in place are as you said "tossed out the window". Now that we know that then we need to come up with a new plan. Its not the ideal plan but its a plan that works given the current situation. In my case my plan included the assumption that I would not be around 10 years from now. My wife didn't like talking about that but she reluctantly agreed and we set course for a plan that terminated in 10 years. We both feel much better about it now. We have set a financial plan and personnel plan that each of us want to achieve over the next 10 years. If things change you adjust the plan again.
What your husband and you are going through is normal for anyone getting a cancer diagnosis (in my opinion). I sure hate seeing younger folks like yourself dealing with this. I wish the best for you and your husband. Being younger really helps the prognosis. Good luck to you. Jerry.
All of us pester the docs for the same answer; how long do we have left? They can't give us that answer because the disease is so complicated and statistics don't give you a present day prognosis for you personally given your particular disease attributes.
I don't believe what your husband is going through is unusual, in fact my doc is very concerned about that aspect of depression and wants to take care of it with drugs if it becomes a ongoing problem. And its not just him, you too are facing many challenges that may cause you to get depressed and need assistance. Its as much about the care giver as it is the patient.
For me the depression and most of the anxiety stopped when I finally realized the plans that were in place are as you said "tossed out the window". Now that we know that then we need to come up with a new plan. Its not the ideal plan but its a plan that works given the current situation. In my case my plan included the assumption that I would not be around 10 years from now. My wife didn't like talking about that but she reluctantly agreed and we set course for a plan that terminated in 10 years. We both feel much better about it now. We have set a financial plan and personnel plan that each of us want to achieve over the next 10 years. If things change you adjust the plan again.
What your husband and you are going through is normal for anyone getting a cancer diagnosis (in my opinion). I sure hate seeing younger folks like yourself dealing with this. I wish the best for you and your husband. Being younger really helps the prognosis. Good luck to you. Jerry.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Anxious - need insight
Hi Cocoloco,
I am sorry you and your husband have joined this club. Having said that there are a lot of people that post on the Beacon that know what you are going through - you are not alone.
Multiple myeloma is a very individualised disease so it is very difficult to give a prognosis. Do you know what your husbands cytogenetics are? The first time I asked what was my prognosis my oncologist replied that he couldn't say but roughly 1/3 of people get better, 1/3 are stable and 1/3 get worse. I don't know how true that is and in reality treatment of this disease is getting better all the time. My husband and I were in the awful position that we were told that there was no more treatment and that my life expectancy was 18 months. Luckily they changed their minds and that was 21/2 years ago
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I haven't experienced depression but my husband has. I felt it was important that he talk with a health care professional about an action plan for treating it. If you are worried about your husbands state of mind and yours maybe you could talk to a professional about it. If it needs to be treated - treat it.
Quite a few of the posters on this site talk about the "new normal", the new normal can take a bit of time to get used to. Of course it will depend on an individuals treatment, how they respond, how much damage there was in the first place etc. For me the 3 spinal fractures I have mean I can no longer jump on the trampoline - I guess I have to grow up sometime.
There are many other things I can not do in my "new normal" I try not to think about them but rather things that I can do.
All the best,
Libby
I am sorry you and your husband have joined this club. Having said that there are a lot of people that post on the Beacon that know what you are going through - you are not alone.
Multiple myeloma is a very individualised disease so it is very difficult to give a prognosis. Do you know what your husbands cytogenetics are? The first time I asked what was my prognosis my oncologist replied that he couldn't say but roughly 1/3 of people get better, 1/3 are stable and 1/3 get worse. I don't know how true that is and in reality treatment of this disease is getting better all the time. My husband and I were in the awful position that we were told that there was no more treatment and that my life expectancy was 18 months. Luckily they changed their minds and that was 21/2 years ago
. I haven't experienced depression but my husband has. I felt it was important that he talk with a health care professional about an action plan for treating it. If you are worried about your husbands state of mind and yours maybe you could talk to a professional about it. If it needs to be treated - treat it.
Quite a few of the posters on this site talk about the "new normal", the new normal can take a bit of time to get used to. Of course it will depend on an individuals treatment, how they respond, how much damage there was in the first place etc. For me the 3 spinal fractures I have mean I can no longer jump on the trampoline - I guess I have to grow up sometime.
There are many other things I can not do in my "new normal" I try not to think about them but rather things that I can do. All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Anxious - need insight
Myeloma has changed my life, and not the good kind of change, but the one where things are going as well as they should for a 30 something year old (work, family etc) and then there is a brick wall.
I am in similar lifestage, I had just graduated from university (mature student) started a good job, started dating a nice guy and then I was diagnosed (at 32).
My life was suddenly on hold, and my new life was chemo, appointments, feeling sick and this thing called a stem cell transplant coming up.
After my transplant, when I stopped being busy with chemo and all the appointments and was home by myeslf most days "recovering" the mental stuff started hitting me.
My church reached out and I went to professional counseling for about 4 months, and during those session I grieved this life I had all planned out that was never going to to happen (having kids etc) and accepted what I was going through. The so called appreciate what you do have, not what you don't.
The nice guy I was dating moved us in together before my transplant, and we ended up getting married just over a year later. Now we just bought a house together, I am back at work at my old job (I was terminated from my other job when I was on sick leave) and I just started my Masters (grad school) online.
Life goes on and don't stop living and doing things you want to do. I may not be here in 10 years, but those are 10 years to live my life in a meaningful way
I am in similar lifestage, I had just graduated from university (mature student) started a good job, started dating a nice guy and then I was diagnosed (at 32).
My life was suddenly on hold, and my new life was chemo, appointments, feeling sick and this thing called a stem cell transplant coming up.
After my transplant, when I stopped being busy with chemo and all the appointments and was home by myeslf most days "recovering" the mental stuff started hitting me.
My church reached out and I went to professional counseling for about 4 months, and during those session I grieved this life I had all planned out that was never going to to happen (having kids etc) and accepted what I was going through. The so called appreciate what you do have, not what you don't.
The nice guy I was dating moved us in together before my transplant, and we ended up getting married just over a year later. Now we just bought a house together, I am back at work at my old job (I was terminated from my other job when I was on sick leave) and I just started my Masters (grad school) online.
Life goes on and don't stop living and doing things you want to do. I may not be here in 10 years, but those are 10 years to live my life in a meaningful way
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Anxious - need insight
Post auto, in my case, the follow up steps were a bone biopsy, myeloma panel and PET/CT. Depending on that the physician needs to make a decision of whether there will be maintenance, another treatment cycle, or nothing. If there are post-transplant bone related complaints (as in my case), doc may order radiation. This decease does not choose rich or poor, family or no family. I had it all and I still do. At least this is how I choose to see it. I have a four and a half year old son who I plan on seeing at graduation. Any other way of looking at this is a disservice to you and your husband. Positive thinking goes a long way. So far it has been working for me - for how long, who knows, and I choose not to reflect on that. That said, having a contingency plan and be prepared helps (i.e. life insurance, med insurance, work related decisions, household matters and so on). You do not want to be dealing with this stuff if or when things deteriorate. Good luck.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Anxious - need insight
I am sorry that you and your husband are dealing with myeloma. Some advice:
1. Make the doctors talk to you. I love my oncologist because he encourages questions and will talk to me. All his patients know that his appointments tend to run 45 minutes late, but that is because he is talking to us and answering our questions.
2. When I was diagnosed, I was 52 years old. My only daughter was about to graduate from college. And I was about to start a new stage of my life. Well, out lives were turned upside down. But you know what, after the initial shock, I got angry and determined. I also spoke with my clergy and would have joined a local group or seen a counselor if I thought it would help me. It could really help your husband.
3. Like the other posters, I've had to re-think my life plans. I got my financial house in order to make sure that my daughter is taken care of. I have a list of things I want to do and places I want to see. I refuse to call it a "bucket" list. It's just a list. And I'm working my way through it.
4. I promised my daughter I'd be around to see my grandchildren. Right now, I plan to be around to see her finish her doctoral program, and if she ever meets a guy, maybe I'll have grandchildren....
5. I also promised my sister that I'd be around for her, and I plan to keep that promise, too. Even if, deep down, I know I might not be able to keep that promise, it helps to support my determination to be well.
6. I was lucky to have the kind of job that can be done by telework and an employer that encourages it. I teleworked full time all through my treatment. I now telework 2 days a week, and my staff telework 3 days a week. Can your husband telework?
Hang in there, and keep writing for support. This site is a great source or support and consolation.
Dana
1. Make the doctors talk to you. I love my oncologist because he encourages questions and will talk to me. All his patients know that his appointments tend to run 45 minutes late, but that is because he is talking to us and answering our questions.
2. When I was diagnosed, I was 52 years old. My only daughter was about to graduate from college. And I was about to start a new stage of my life. Well, out lives were turned upside down. But you know what, after the initial shock, I got angry and determined. I also spoke with my clergy and would have joined a local group or seen a counselor if I thought it would help me. It could really help your husband.
3. Like the other posters, I've had to re-think my life plans. I got my financial house in order to make sure that my daughter is taken care of. I have a list of things I want to do and places I want to see. I refuse to call it a "bucket" list. It's just a list. And I'm working my way through it.
4. I promised my daughter I'd be around to see my grandchildren. Right now, I plan to be around to see her finish her doctoral program, and if she ever meets a guy, maybe I'll have grandchildren....
5. I also promised my sister that I'd be around for her, and I plan to keep that promise, too. Even if, deep down, I know I might not be able to keep that promise, it helps to support my determination to be well.
6. I was lucky to have the kind of job that can be done by telework and an employer that encourages it. I teleworked full time all through my treatment. I now telework 2 days a week, and my staff telework 3 days a week. Can your husband telework?
Hang in there, and keep writing for support. This site is a great source or support and consolation.
Dana
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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: Anxious - need insight
The prognosis for multiple myeloma is evolving as we communicate and in a positive way. I can tell you that the doctor that supervised my SCT told me that the multiple myeloma would eventually return and when it did to come back because new and better treatments are coming forth all the time.
I think you need to impress on your husband that no one knows how much time he has, and didn't even before his diagnosis, so he needs to make the most of the unknown. I have convinced myself that I don't know that my present disease will end my life and I have no way of knowing what will.
I think you need to impress on your husband that no one knows how much time he has, and didn't even before his diagnosis, so he needs to make the most of the unknown. I have convinced myself that I don't know that my present disease will end my life and I have no way of knowing what will.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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