I don't know how to deal with this one!

Waiting to breathe

In December 2011, I received a phone from my husband and he informed me that he has myeloma or carcinoma or something like that. So, I got off phone and started to read a few things about it. Still not sure if that is what he really has. Then, I saw INCUREABLE and after his 5 heart attacks, diabetes and one of the toughest years with my own health issues. he has it.
I just knew 2012 was going to be a better year for us. BAM!!! I get that call. My husband still wants to think that is all a mistake, even though we have seen the test results ourselves.  we are find out what stage and few other things on the 5th. The Dr. said chemotherapy every 4 days for 4 months. My husband doesn't want to know or hear anything about it. 

Having him is more important then anything to me. I can't breathe just at the thought that this time I will lose him, I  just don't know when. How do I breathe? How do I stop crying? How do I exhale when the fear in me is so great that my body actually seems to stop working. 
My head is spinning and I can't keep up anymore. How does anyone cope with losing a spouse. Even the though of losing him is to much to handle. I can't even handle that.
I need him, I can't breathe without him. What now? Help someone, help me sort this out. I don't know who to turn to, so I beg all those who are or have been though this to help me, PLEASE! 

I probably said more then you wanted to hear. Sorry!

MMSpouse

You will breathe again
Hi, I am very new to this as well. My husband at 47 years old was diagnosed with MM on May 6th 2011. I thought I would never breathe again either. The world was just spinning around us so fast that I didn't know what to do. He started aggressive chemo on a clinical trial in June. He went twice a week for for infusion for two weeks then had a week off and then started again for 8 cycles. His last infusion was December 23rd.
I am sure you don't want to hear our whole story, but I guess my motivation for writing is to tell you that you will breathe again. You will smile again, and you will find the strength to move forward. I found my strength in my husband. Though there were times I was so angry at him. When we went from each various doctors appointment to test, to infusion he didn't want to ask any questions. My mind was racing with questions but out of respect for the way he needed to handle it I didn't ask, unless I asked him first. The hardest part was when the doctor asked if he wanted to know his prognosis and he said no. I feel desperately in need of some control over my life, but I had to respect his decision. He told me it doesn't matter, he doesn't need to put a number on his life expectancy. He needs to fight this in his way. How can you argue with that?
Anyway...I didn't mean to ramble. I feel like I could type for a week! But I just want you to know...you are not alone. Some days are easier than others, but there will be good days.

eihtak

You WILL both make it
Hi, and so very sorry you have had to find this site, but I hope it is a help in getting through this for you. My husband was diagnosed about 2.5 years ago with Multiple Myeloma at 53 yrs old. His original treatment was also chemo for about 4mnths every 3 or 4 days. He handeled it well and we learned a lot about different kinds of chemo and that often it is not the nightmare you may imagine. Unfortunately his cancer is very aggresive and after the 4 months he needed a stem cell transplant. The doc we were referred to is Dr. Hari at Froedtert Hospital in Milwaukee ( this is his specialty ). We live about 3 hrs from there but made several day trips and then made arrangements to stay for a couple months during the transplant. After a few life changes like always being aware of using hand sanitizer and lysol (lol), things were not nearly as scary as we had thought. But....then I was diagnosed with Stage 3 Anal cancer last Feb. I finished my chemo and radiation last April, and though it was hard for me, I am getting back to life whatever that is these days. One would think that to be enough but no....my husbands cancer flared up again and in Dec. he had a full bone marrow transplant. This time was a bit harder and the prep chemo for both transplants is almost worse than the cancer its self. He is out of the hospital now but we are in the area for a couple months again. I am still waiting to have some tests of my own done, but we are both thankful for the life we have. We have 5 children and 5 grandchildren that we plan to watch grow up!!!! I can imagine you feel like you've been hit by a truck, but you will see, it will work out. Be patient, things will fall into place. Out of no where answers and help will come. My husband also wanted to think it would just go away or something in the beginning, but.....it doesn't. Tho it is said to be incurable, we have met several people (mostly men) that are LIVING with this in a remission state for many years. Some live with a maintenance chemo (pill, or IV) like once a week for a while, but usually a very low dose with little side effects. Please stay calm, you will feel better as you get more information, and please keep posting. You will be in my thoughts and prayers.

Waiting to breathe

MMSpouse said:

You will breathe again
Hi, I am very new to this as well. My husband at 47 years old was diagnosed with MM on May 6th 2011. I thought I would never breathe again either. The world was just spinning around us so fast that I didn't know what to do. He started aggressive chemo on a clinical trial in June. He went twice a week for for infusion for two weeks then had a week off and then started again for 8 cycles. His last infusion was December 23rd.
I am sure you don't want to hear our whole story, but I guess my motivation for writing is to tell you that you will breathe again. You will smile again, and you will find the strength to move forward. I found my strength in my husband. Though there were times I was so angry at him. When we went from each various doctors appointment to test, to infusion he didn't want to ask any questions. My mind was racing with questions but out of respect for the way he needed to handle it I didn't ask, unless I asked him first. The hardest part was when the doctor asked if he wanted to know his prognosis and he said no. I feel desperately in need of some control over my life, but I had to respect his decision. He told me it doesn't matter, he doesn't need to put a number on his life expectancy. He needs to fight this in his way. How can you argue with that?
Anyway...I didn't mean to ramble. I feel like I could type for a week! But I just want you to know...you are not alone. Some days are easier than others, but there will be good days.

I am so glad to hear from
I am so glad to hear from you

I am sorry that your family is going through. I get the feeling that no where you are on this MM path none of it is easy. I admire your restraint. I don't think I could handle not asking ?s. I so upset because the Dr didn't give 10 uninterrupted time. We were prepared for conformation of MM. But they said he was in the beginning stages then when bx results came in the oh no he had this along time n he is in the end stages 3B. We were told 2 weeks before his kidneys were in the normal range (I think Dr said it because she wanted off the phone n did like that I was not expecting her medical run around). But 2 weeks later kidneys are functioning less about half. So, that is what floored us. This his major health he already had, they have concerns. But yet didn't explain what her concerns are. She said we will talk day of chemo. I doubt that they have a schedule. I tried to book an appt before day of chemo to review options n ask ?s. They said no. They don't have any open spots. But the chemo nurse can type ?s into computer n the dr will get them in "real time". Which explains why we didn't have her attention.
Today we had to get a letter from the Dr. That states his Dx n the outlook. We are lucky that we will not have to worry about coming up with all the money for his treatment since he is a Vetran. (I would like to run his dr down with my 1 ton truck, she is so uncaring n doesn't give a crap) but at less we don't have to panic about money for teeatment.  But seeing that letter ripped us apart inside. I think my husband just got pushed out of his denial. It been the hardest day yet. I feel bad crying on n off today in front of him. I don't want him feel even worse because I m upset. I did have to leave the benefits office because I started to cry when they were asking about funeral plans n they said end stage one to many times. I had to step out, so my husband started to tear up because I was crying. Anyway, guess I am one rambling. I would love to hear your whole story. My email chiroTamy@yahoo.com. Feel free, I welcome someone who understands .

Thank you for being there. I really needed thodse kind words.  God bless!

Waiting to breathe

MMSpouse said:

You will breathe again
Hi, I am very new to this as well. My husband at 47 years old was diagnosed with MM on May 6th 2011. I thought I would never breathe again either. The world was just spinning around us so fast that I didn't know what to do. He started aggressive chemo on a clinical trial in June. He went twice a week for for infusion for two weeks then had a week off and then started again for 8 cycles. His last infusion was December 23rd.
I am sure you don't want to hear our whole story, but I guess my motivation for writing is to tell you that you will breathe again. You will smile again, and you will find the strength to move forward. I found my strength in my husband. Though there were times I was so angry at him. When we went from each various doctors appointment to test, to infusion he didn't want to ask any questions. My mind was racing with questions but out of respect for the way he needed to handle it I didn't ask, unless I asked him first. The hardest part was when the doctor asked if he wanted to know his prognosis and he said no. I feel desperately in need of some control over my life, but I had to respect his decision. He told me it doesn't matter, he doesn't need to put a number on his life expectancy. He needs to fight this in his way. How can you argue with that?
Anyway...I didn't mean to ramble. I feel like I could type for a week! But I just want you to know...you are not alone. Some days are easier than others, but there will be good days.

I am so glad to hear from
I am so glad to hear from you

I am sorry that your family is going through. I get the feeling that no where you are on this MM path none of it is easy. I admire your restraint. I don't think I could handle not asking ?s. I so upset because the Dr didn't give 10 uninterrupted time. We were prepared for conformation of MM. But they said he was in the beginning stages then when bx results came in the oh no he had this along time n he is in the end stages 3B. We were told 2 weeks before his kidneys were in the normal range (I think Dr said it because she wanted off the phone n did like that I was not expecting her medical run around). But 2 weeks later kidneys are functioning less about half. So, that is what floored us. This his major health he already had, they have concerns. But yet didn't explain what her concerns are. She said we will talk day of chemo. I doubt that they have a schedule. I tried to book an appt before day of chemo to review options n ask ?s. They said no. They don't have any open spots. But the chemo nurse can type ?s into computer n the dr will get them in "real time". Which explains why we didn't have her attention.
Today we had to get a letter from the Dr. That states his Dx n the outlook. We are lucky that we will not have to worry about coming up with all the money for his treatment since he is a Vetran. (I would like to run his dr down with my 1 ton truck, she is so uncaring n doesn't give a crap) but at less we don't have to panic about money for teeatment.  But seeing that letter ripped us apart inside. I think my husband just got pushed out of his denial. It been the hardest day yet. I feel bad crying on n off today in front of him. I don't want him feel even worse because I m upset. I did have to leave the benefits office because I started to cry when they were asking about funeral plans n they said end stage one to many times. I had to step out, so my husband started to tear up because I was crying. Anyway, guess I am one rambling. I would love to hear your whole story. My email chiroTamy@yahoo.com. Feel free, I welcome someone who understands .

Thank you for being there. I really needed thodse kind words.  God bless!

Waiting to breathe

eihtak said:

You WILL both make it
Hi, and so very sorry you have had to find this site, but I hope it is a help in getting through this for you. My husband was diagnosed about 2.5 years ago with Multiple Myeloma at 53 yrs old. His original treatment was also chemo for about 4mnths every 3 or 4 days. He handeled it well and we learned a lot about different kinds of chemo and that often it is not the nightmare you may imagine. Unfortunately his cancer is very aggresive and after the 4 months he needed a stem cell transplant. The doc we were referred to is Dr. Hari at Froedtert Hospital in Milwaukee ( this is his specialty ). We live about 3 hrs from there but made several day trips and then made arrangements to stay for a couple months during the transplant. After a few life changes like always being aware of using hand sanitizer and lysol (lol), things were not nearly as scary as we had thought. But....then I was diagnosed with Stage 3 Anal cancer last Feb. I finished my chemo and radiation last April, and though it was hard for me, I am getting back to life whatever that is these days. One would think that to be enough but no....my husbands cancer flared up again and in Dec. he had a full bone marrow transplant. This time was a bit harder and the prep chemo for both transplants is almost worse than the cancer its self. He is out of the hospital now but we are in the area for a couple months again. I am still waiting to have some tests of my own done, but we are both thankful for the life we have. We have 5 children and 5 grandchildren that we plan to watch grow up!!!! I can imagine you feel like you've been hit by a truck, but you will see, it will work out. Be patient, things will fall into place. Out of no where answers and help will come. My husband also wanted to think it would just go away or something in the beginning, but.....it doesn't. Tho it is said to be incurable, we have met several people (mostly men) that are LIVING with this in a remission state for many years. Some live with a maintenance chemo (pill, or IV) like once a week for a while, but usually a very low dose with little side effects. Please stay calm, you will feel better as you get more information, and please keep posting. You will be in my thoughts and prayers.

Thank you for your outlook.
Thank you for your outlook. I can't imagine what you n your family have been through. I know hearing from others who "get it" we will find our way through. Knowing that it may be easier then we are thinking, helps a lot. Today was rough but I have to adjust to the fact that with MM it's going to be a wild ride. I get the feeling that there lots of ups n downs. I hope u don't mind if I turn to all of u when it's to hard alone. Thank u again. Plz email if up to it. I do my beat to return support where ever I can.

Waiting to breathe

eihtak said:

You WILL both make it
Hi, and so very sorry you have had to find this site, but I hope it is a help in getting through this for you. My husband was diagnosed about 2.5 years ago with Multiple Myeloma at 53 yrs old. His original treatment was also chemo for about 4mnths every 3 or 4 days. He handeled it well and we learned a lot about different kinds of chemo and that often it is not the nightmare you may imagine. Unfortunately his cancer is very aggresive and after the 4 months he needed a stem cell transplant. The doc we were referred to is Dr. Hari at Froedtert Hospital in Milwaukee ( this is his specialty ). We live about 3 hrs from there but made several day trips and then made arrangements to stay for a couple months during the transplant. After a few life changes like always being aware of using hand sanitizer and lysol (lol), things were not nearly as scary as we had thought. But....then I was diagnosed with Stage 3 Anal cancer last Feb. I finished my chemo and radiation last April, and though it was hard for me, I am getting back to life whatever that is these days. One would think that to be enough but no....my husbands cancer flared up again and in Dec. he had a full bone marrow transplant. This time was a bit harder and the prep chemo for both transplants is almost worse than the cancer its self. He is out of the hospital now but we are in the area for a couple months again. I am still waiting to have some tests of my own done, but we are both thankful for the life we have. We have 5 children and 5 grandchildren that we plan to watch grow up!!!! I can imagine you feel like you've been hit by a truck, but you will see, it will work out. Be patient, things will fall into place. Out of no where answers and help will come. My husband also wanted to think it would just go away or something in the beginning, but.....it doesn't. Tho it is said to be incurable, we have met several people (mostly men) that are LIVING with this in a remission state for many years. Some live with a maintenance chemo (pill, or IV) like once a week for a while, but usually a very low dose with little side effects. Please stay calm, you will feel better as you get more information, and please keep posting. You will be in my thoughts and prayers.

Thank you for your outlook.
Thank you for your outlook. I can't imagine what you n your family have been through. I know hearing from others who "get it" we will find our way through. Knowing that it may be easier then we are thinking, helps a lot. Today was rough but I have to adjust to the fact that with MM it's going to be a wild ride. I get the feeling that there lots of ups n downs. I hope u don't mind if I turn to all of u when it's to hard alone. Thank u again. Plz email if up to it. I do my beat to return support where ever I can.

eihtak

Waiting to breathe said:

Thank you for your outlook.
Thank you for your outlook. I can't imagine what you n your family have been through. I know hearing from others who "get it" we will find our way through. Knowing that it may be easier then we are thinking, helps a lot. Today was rough but I have to adjust to the fact that with MM it's going to be a wild ride. I get the feeling that there lots of ups n downs. I hope u don't mind if I turn to all of u when it's to hard alone. Thank u again. Plz email if up to it. I do my beat to return support where ever I can.

2:00 am
I see you posted at almost 2:00am.....don't forget to take care of yourself!!! I have learned we are no help to others (husband) if we are absolutely exhausted ourselves. Sometimes in the middle of the night I too will get up and do housework or go on the computer, but make sure you are getting sleep too. MM is a wild ride, I keep telling myself I always liked to go to the fair and this is some rollercoaster. The doctors usually tell you the worst case that could happen, that way if it does go that way they have prepared you, but from talking to people we have met, it usually is not the worst case!!!! So that is something to keep in mind. My life is also crazy right now full of ups and downs but just talking on here seems to help a little and make me feel not so alone...keep in touch, you are in my prayers.

Waiting to breathe

eihtak said:

2:00 am
I see you posted at almost 2:00am.....don't forget to take care of yourself!!! I have learned we are no help to others (husband) if we are absolutely exhausted ourselves. Sometimes in the middle of the night I too will get up and do housework or go on the computer, but make sure you are getting sleep too. MM is a wild ride, I keep telling myself I always liked to go to the fair and this is some rollercoaster. The doctors usually tell you the worst case that could happen, that way if it does go that way they have prepared you, but from talking to people we have met, it usually is not the worst case!!!! So that is something to keep in mind. My life is also crazy right now full of ups and downs but just talking on here seems to help a little and make me feel not so alone...keep in touch, you are in my prayers.

Thank you for your concern.
Thank you for your concern. I have been on computer about 15 to 18 hrs a day. But I am a late night person. I do sleep in. I have dound great comfort and support oline. I had never been on a blog or posted anything online but I have found myself in desperate need of support. This is the first time I feel that my large family is not showing support. I have been lucky. They have always been there no matter what. Everyone has their things going on in their life. I am not angry, just a bit lost. I major concern is when my husband isn't feeling well. I can't cook. He does all that. Hope I don't make him sicker by cooking for him or maybe we might strave. Well, we domlivein Vegas, so if he is up to it we could just do buffets (yuck). Today, I have had go focus on my puppy, he got neutred and he as had a hard day.
I am so grateful that I have all of you to turn to. I believe I will find my way, it just easier knowing I can turn to all of you for comfort and information.

MMSpouse

Waiting to breathe said:

Thank you for your concern.
Thank you for your concern. I have been on computer about 15 to 18 hrs a day. But I am a late night person. I do sleep in. I have dound great comfort and support oline. I had never been on a blog or posted anything online but I have found myself in desperate need of support. This is the first time I feel that my large family is not showing support. I have been lucky. They have always been there no matter what. Everyone has their things going on in their life. I am not angry, just a bit lost. I major concern is when my husband isn't feeling well. I can't cook. He does all that. Hope I don't make him sicker by cooking for him or maybe we might strave. Well, we domlivein Vegas, so if he is up to it we could just do buffets (yuck). Today, I have had go focus on my puppy, he got neutred and he as had a hard day.
I am so grateful that I have all of you to turn to. I believe I will find my way, it just easier knowing I can turn to all of you for comfort and information.

Riding the Roller Coaster
Hi again,
So my husband finished his chemo regimen and is now officially on maintenance taking Revlamid orally. When we went to his appointment last week he was told he was in VGPR. I thought we were going to hear some big long medical term, but it ended up being Very Good Partial Response, meaning 90% of his cancer was gone. His M spike stabilized at .5 which they said was good since when he was diagnosed it was 4.7. So they felt he was in a place where the cancer had stabilized and further chemo infusion would not do anything more. They hope now the Revlamid along with his own immune system will either kill the rest of the myeloma or keep it in a stable condition. I did ask how long this could last, and they said they have one "superstar" patient who lasted 48 months on maintenance. It's funny how when you first hear that it's exciting and you feel a sense of relief. Then later, in the sleepless hours of the night 48 months (if you are a superstar patient) doesn't seem that long. I guess my husband was right...why put a number on it? For so long I wanted some sort of prognosis or estimate, and I finally got a number...and now I don't want it. I guess this is the roller coaster ride we are all on.
I am so sorry to be so down...it's just such a tough road and some weeks are worse than others. I was trying to wait till I felt a little more positive to write back, but the positive just doesn't seem to be coming. Though I know it will...
I feel myself annoyed at people who are trying to make it seem more positive. Does anyone else get that way? I almost feel like they are trying to minimize what we are going through when in my head I know they are probably just trying to make me feel better. Yet it almost makes it worse.
Sorry to be such a downer...hoping my roller coaster ride takes an upswing soon.
Hoping all the other roller coaster rides out there are doing well!

shelleybean

MMSpouse said:

Riding the Roller Coaster
Hi again,
So my husband finished his chemo regimen and is now officially on maintenance taking Revlamid orally. When we went to his appointment last week he was told he was in VGPR. I thought we were going to hear some big long medical term, but it ended up being Very Good Partial Response, meaning 90% of his cancer was gone. His M spike stabilized at .5 which they said was good since when he was diagnosed it was 4.7. So they felt he was in a place where the cancer had stabilized and further chemo infusion would not do anything more. They hope now the Revlamid along with his own immune system will either kill the rest of the myeloma or keep it in a stable condition. I did ask how long this could last, and they said they have one "superstar" patient who lasted 48 months on maintenance. It's funny how when you first hear that it's exciting and you feel a sense of relief. Then later, in the sleepless hours of the night 48 months (if you are a superstar patient) doesn't seem that long. I guess my husband was right...why put a number on it? For so long I wanted some sort of prognosis or estimate, and I finally got a number...and now I don't want it. I guess this is the roller coaster ride we are all on.
I am so sorry to be so down...it's just such a tough road and some weeks are worse than others. I was trying to wait till I felt a little more positive to write back, but the positive just doesn't seem to be coming. Though I know it will...
I feel myself annoyed at people who are trying to make it seem more positive. Does anyone else get that way? I almost feel like they are trying to minimize what we are going through when in my head I know they are probably just trying to make me feel better. Yet it almost makes it worse.
Sorry to be such a downer...hoping my roller coaster ride takes an upswing soon.
Hoping all the other roller coaster rides out there are doing well!

I was in remission for 3 years, had a second auto transplant and am back in remission 6 months so far.  My doctor has a patient who was in remission for 9 years so how's that for a superstar.  So much of fighting this disease is telling yourself you WILL be a survivor.  I had friends that thought I was in total denial of the cancer returning.  Oh, I know the statistics but I choose to be positive.  My husband keeps telling me that none of us are promised tomorrow so we need to make sure today is a good day.  I live my life by saying, "don't ruin today by worrying about tomorrow".  After all, life is just one day followed by another.  I also put a lot of stock into making sure I laugh every single day.  Hey, cancer got my husband to learn how to cook and he seems to really enjoy it.  Who knew!  He also learned how to do the laundry, clean the house and take care of the dog.  My illness has empowered my husband.  Our marriage is so much better due to this stinking cancer.  We value eachother so much more and don't take anything for grantid.  I never would have thought that cancer has made my life better.  My family is closer, I have better relationships with my friends and even the neighbors are getting closer and talking with one another all due to my cancer.  I know things may seem really bleak right now but just get through one hour at a time.  And, if things are really terrible, just take it a minute at a time.  Don't think about six months from now.  Again, my dad use to say, "none of us know when we may get hit by a beer truck while crossing the street".  Be a superstar and become a cancer fighting team.  It take a village to raise a child and I believe it takes that same village to get someone through cancer.  You will have your village of support.  Just you wait and see.  I set up a caring bridge website to share my experience.  It has been the best therapy to write everything down and to read the messages of support from friends, family and the many people I met while sitting in the waiting room.  My doctor has told me that when my cancer returns, they have an arsinal of drugs to fight with.  The drugs are getting better and less harmful on the rest of the body.  The way they treated my cancer in 2008 is very different than how they treated it in 2012.  I had much less discomfort the second time around.  Good luck and stay positive!  p.s.  I'm 46 and plan on seeing many, many more birthdays.

Brbm51

HOW TO DEAL WITH THE LOSS OF MY SOULMATE

My husband was diagnosed with myeloma and kidney failure July 8th 2014.  He is getting worse every day.  How do I cope.