I can totally relate...my husband is 41 and was just diagnosed with stage 3. It was a complete shock. He was always very healthy. In only a few months he went from great to looking a little anemic so I had him go for an anemia panel that showed severe anemia. Our dr had confirming labs drawn plus a kidney panel and the next day he called me and told me to take Rick to the ER because in was in end stage renal failure! We were there for 8 days. He never was symptomatic of kidney issues....I think that surprised the drs!
We have a 4 yr daughter and have been very honest with her, but how do you explain this to a 4 yr old when I am struggling to comprehend it!
Forums
Re: Not yet diagnosed but tests are bad
dee777 wrote:
> My kids are elementary school age. I have just told them at this time mom
> is sick and is trying to get well.
> That is the course I am taking as I don't want to scare them, especially if
> I have long Drs. visits I don't want them scared mom may not come home,
> ect.
> Unless things take for the worse I just feel this is enough enformation for
> them to digest.
Thanks dee777 and Nancy (by the way i figured you are Calgarian, as well as we are). Our litlle one is still in preschool and older just started kindergarten so definitely not yet able to munch all of the complicated info. When my husband started having pains, little one used to pet him like a puppy crying that she is sorry he was sick, so given that I would rather just keep it the way you suggest - tell them their daddy is sick but no give too much detail.
> My kids are elementary school age. I have just told them at this time mom
> is sick and is trying to get well.
> That is the course I am taking as I don't want to scare them, especially if
> I have long Drs. visits I don't want them scared mom may not come home,
> ect.
> Unless things take for the worse I just feel this is enough enformation for
> them to digest.
Thanks dee777 and Nancy (by the way i figured you are Calgarian, as well as we are). Our litlle one is still in preschool and older just started kindergarten so definitely not yet able to munch all of the complicated info. When my husband started having pains, little one used to pet him like a puppy crying that she is sorry he was sick, so given that I would rather just keep it the way you suggest - tell them their daddy is sick but no give too much detail.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
Lyn, Thank you. This is so encouraging!
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
lizzard wrote:
> I can totally relate...my husband is 41 and was just diagnosed with stage
> 3. It was a complete shock. He was always very healthy. In only a few
> months he went from great to looking a little anemic so I had him go for an
> anemia panel that showed severe anemia. Our dr had confirming labs drawn
> plus a kidney panel and the next day he called me and told me to take Rick
> to the ER because in was in end stage renal failure! We were there for 8
> days. He never was symptomatic of kidney issues....I think that surprised
> the drs!
> We have a 4 yr daughter and have been very honest with her, but how do you
> explain this to a 4 yr old when I am struggling to comprehend it!
Same boat, though my husband is older. but it does not matter. The pain I have looking at two our bundles and what the future may hold for them is sometimes worse than the fact of multiple myeloma itself.
> I can totally relate...my husband is 41 and was just diagnosed with stage
> 3. It was a complete shock. He was always very healthy. In only a few
> months he went from great to looking a little anemic so I had him go for an
> anemia panel that showed severe anemia. Our dr had confirming labs drawn
> plus a kidney panel and the next day he called me and told me to take Rick
> to the ER because in was in end stage renal failure! We were there for 8
> days. He never was symptomatic of kidney issues....I think that surprised
> the drs!
> We have a 4 yr daughter and have been very honest with her, but how do you
> explain this to a 4 yr old when I am struggling to comprehend it!
Same boat, though my husband is older. but it does not matter. The pain I have looking at two our bundles and what the future may hold for them is sometimes worse than the fact of multiple myeloma itself.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Not yet diagnosed but tests are bad
Hi Noway, I have sent you a personal message! Our support group meets the second Thursday of the month at Carma House, but tonight's meeting is cancelled due to the snowstorm.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Not yet diagnosed but tests are bad
Hi Noway - We were in your position this past July and August. We started searching the test results on the internet when, in early September, the bone marrow biopsy confirmed our fears although we were over the shock. The diagnosis was "Smoldering" Multiple Myeloma (SMM)which calls for no treatment according to the specialist we were seeing. We have since become part of a clinical trial for SMM patients which is moving the numbers in the right direction with no meaningful side effects. My advice to you would be to become your own advocate. Learn as much as possible about the disease on the internet. There is abundant information on clinical trials and new drugs that are being used to treat this disease. At first, I kept a notebook for abbreviations, definitions and drugs. This really helped. We got copies of all of the test results and compared the results to the requirements for clinical trials to see for which ones we might qualify. The amount of information is overwhelming and often scary. We have found that there are advancements being made in the treatment of this disease. The Beacon provides a wealth of information......we found out about the NIH clinical trail here.....keep reading!! As far as children are concerned, we are completely open with our 15 year old son. Although he is concerned, his life goes on with his activities. As long as we stay positive and continue with day to day life, I feel he will do the same. Best wishes to you and your family from ours. Michele
Re: Not yet diagnosed but tests are bad
Dear Noway,
How well I remember being in the state of shock and absolute disbelief, even terror when my husband was diagnosed with a " raging lion " m myeloma. It was July 2011.The road to acceptance has been rough and hard won for sure. Now, post transplant Feb 2012, my husband and I look back on our last 18 months in absolute wonder. How much we have grown, how much we have changed, how much more loving and present we both are to every ( well almost) little thing. The children as well.
The journey will teach you, lead you...and care for you if you just let it. Washed with tears, rage, tenderness...help and Grace popped up in the most unexpected places and times. I concur with the others. There is so much good medicine available now. Your husband will find relief and most certainly reach remission.
My husband too was always full of health and vitality. I believe that served him well during both the chemo and transplant..he sailed through without a hitch. After the 100 days of recovery - watched many great movies, read more books then ever- life resumed pretty much back to normal, except we no longer take things for granted. He hikes, camps, walks marathons and happily drinks his beer .
and is back to work.
Dear Noway, you are facing a challenging road....which you will travel by simply putting one foot in front of the other. I am sorry that you and your family are now part of our dubious circle. May you trust that you will respond as needed and make it through....just take loving care of yourself along the way.
How well I remember being in the state of shock and absolute disbelief, even terror when my husband was diagnosed with a " raging lion " m myeloma. It was July 2011.The road to acceptance has been rough and hard won for sure. Now, post transplant Feb 2012, my husband and I look back on our last 18 months in absolute wonder. How much we have grown, how much we have changed, how much more loving and present we both are to every ( well almost) little thing. The children as well.
The journey will teach you, lead you...and care for you if you just let it. Washed with tears, rage, tenderness...help and Grace popped up in the most unexpected places and times. I concur with the others. There is so much good medicine available now. Your husband will find relief and most certainly reach remission.
My husband too was always full of health and vitality. I believe that served him well during both the chemo and transplant..he sailed through without a hitch. After the 100 days of recovery - watched many great movies, read more books then ever- life resumed pretty much back to normal, except we no longer take things for granted. He hikes, camps, walks marathons and happily drinks his beer .
and is back to work. Dear Noway, you are facing a challenging road....which you will travel by simply putting one foot in front of the other. I am sorry that you and your family are now part of our dubious circle. May you trust that you will respond as needed and make it through....just take loving care of yourself along the way.
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Libi
Re: Not yet diagnosed but tests are bad
The stress and fear you are feeling is obvious and understandable. Being in a new place without a strong support system surrounding you further adds to those fears. From experience, I can tell you, the fear of the unknown is far worse than knowing what's wrong and having a plan for treatment. Prior to my husband's diagnosis, I had the same types of feelings as you. I didn't think I could handle things--my whole world seemed to be crumbling. However, as soon as we knew for certain he had Myeloma, even though it was not a welcome thing to hear, we felt better knowing. It is important when you get the diagnosis to educate yourselves, seek treatment from a Myeloma specialist, and join a support group if possible. There are several top Myeloma treatment centers, so look to them for guidance. The Leukemia and Lymphoma Society has a wealth of information--call them. Our local oncologist referred my husband to UAMS for a stem cell transplant--he ultimately had two transplants, and everything was done on an outpatient basis. He is now in remission, on maintenance, and doing great. Was it all easy? No. BUT, by educating ourselves, seeking treatment with a myeloma specialist, and joining a support group, our journey was much easier. I believe doing these things will help you as well. May God's blessings be with you!
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Louise
Re: Not yet diagnosed but tests are bad
Dear Noway:
I am so sorry to read what you are going through right now. But, please be asured, you will feel better soon. Multiple Myeloma is nowadays not the end of the road.
I am writing from Berlin/Germany. My English is not very good, but my thoughts and best wishes are going over the Ocean to you.
Your two little daughters will help you to cope with the situation. And please, do not blame you. You have done nothing wrong. It is nobodys fault, that your husband got Myeloma.
Kindest Regards,
Elfriede
Berlin/Germany
I am so sorry to read what you are going through right now. But, please be asured, you will feel better soon. Multiple Myeloma is nowadays not the end of the road.
I am writing from Berlin/Germany. My English is not very good, but my thoughts and best wishes are going over the Ocean to you.
Your two little daughters will help you to cope with the situation. And please, do not blame you. You have done nothing wrong. It is nobodys fault, that your husband got Myeloma.
Kindest Regards,
Elfriede
Berlin/Germany
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Elfriede - Name: Elfriede
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2012
- Age at diagnosis: 57
Re: Not yet diagnosed but tests are bad
Thank you ALL so much for such encouragement and support. I can't say how much touched I was by your words. We both cried yesterday like babies when we put kids to sleep and again, I know it is normal to cry, be afraid, be scary, be completely lost and not knowing how to help him. I am a fighter myself, at times I think I would rather fight this battle instead of him because I want him to be with us for as long as possible. The info on the internet is just too much to handle. I am trying to read conventional medicine methods and atlernative treatment options and everything is so contradictory...it will fall in its place at some point. I sometimes think maybe it would even be better if he was working...but at the same time maybe it is even better that he is the one who is taking care of our two little ones now.
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
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