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It’s been a rough journey!

Forums General Melanoma Community It’s been a rough journey!

  • Post
    bigday1004
    Participant

      So, my husband Tom and I have been married for 2 years now and last December 2009 he was diagnosed with stage 3 melanoma. In January he had a modified radical neck disection where they removed 45 lymph nodes 5 of which tested positive for melanoma.  He than went back in month later for his power port to be put in and the following month started the interferon drip. He had the drip for 20 days, 5 days a week for 4 weeks. He had a little break and than started with radiation which was 36 days (5 days a week) and during this time he lost 40 pounds that he couldn't afford to lose.

      So, my husband Tom and I have been married for 2 years now and last December 2009 he was diagnosed with stage 3 melanoma. In January he had a modified radical neck disection where they removed 45 lymph nodes 5 of which tested positive for melanoma.  He than went back in month later for his power port to be put in and the following month started the interferon drip. He had the drip for 20 days, 5 days a week for 4 weeks. He had a little break and than started with radiation which was 36 days (5 days a week) and during this time he lost 40 pounds that he couldn't afford to lose. Now he is back on the interferon maintainece shots which is 3 days a week until February. He has been working during all of this because if he doesn't work a certain amount of hours for FMLA we can lose our insurance, and I work part time and don't have benifits.

      We recently got results back from his last PET scan and found out that there is now a spot on his right lung. Out oncologist talked to several other doctors to have a scope biopsy done on the spot to make sure it's not cancer. However,  because of where it is located no doctor will do it. I guess it is located next to some major blood vessels and it is to risky to do with a scope. In order to do a biopsy they will have to crack open his chest and remove the spot. Well the onocologist decided to wait because he doesn't want Tom to go through hell. He has another CT scan in 2 months to check up on the spot and see if it has changed in size.

      It has been so rough for the both of us Tom more so than me. I feel like I have to hide my feelings and emotions so that I can be strong not only for Tom but his mom as well.  I have kept it bottled up so much inside that it's actually starting to wear me down mentally. I don't know who I can turn to because Tom already has too much on his mind with battling this demon and his mom needs me because Tom is her only child. It's hard I wont lie, and I am just praying that everything will go okay with treatments and scans. I need some good news for once because bad news is wearing me down.

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    • Replies
        bluepeople
        Participant

           Hi,

          I'm sorry for all that you have been through so far.  People who have not experienced it, do not realize how hard things can be on the other person, not just the patient.  I guess I don't really have good news to give you as we have just started this whole process, but know that there are people who understand how you are feeling and can symphathize with you.  I think for sure this is a place where you can come to just vent if you have to.  You don't know me, but if you ever need to talk, always feel free to email me.  My prayers will be with you and your family.

          Akilyn

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            bigday1004
            Participant

              I completely agree with you about how people who have not experienced this don't realize how hard it can be. Also I'm sorry to hear that your loved one is now going through this. If you have any questions email me or if you need someone to talk to as well I'm here.

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              bigday1004
              Participant

                I completely agree with you about how people who have not experienced this don't realize how hard it can be. Also I'm sorry to hear that your loved one is now going through this. If you have any questions email me or if you need someone to talk to as well I'm here.

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              bluepeople
              Participant

                 Hi,

                I'm sorry for all that you have been through so far.  People who have not experienced it, do not realize how hard things can be on the other person, not just the patient.  I guess I don't really have good news to give you as we have just started this whole process, but know that there are people who understand how you are feeling and can symphathize with you.  I think for sure this is a place where you can come to just vent if you have to.  You don't know me, but if you ever need to talk, always feel free to email me.  My prayers will be with you and your family.

                Akilyn

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                Jaime.30
                Participant

                  Hello my fellow facebook friend!  I know exactally what you are going through and you and Tom are always in our prayers!  With Eston's brain surgery only finding swelling it is like our family and friends think that this is over.  Its not over for Eston and my mind does not ever stop thinking about that swelling and what is causing it and what is causing the uptake in his neck nodes that are left.  This cancer can move so fast and that scares me beyond belief.  I am always here if you need someone to talk to!  ♥Jaime

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                  Jaime.30
                  Participant

                    Hello my fellow facebook friend!  I know exactally what you are going through and you and Tom are always in our prayers!  With Eston's brain surgery only finding swelling it is like our family and friends think that this is over.  Its not over for Eston and my mind does not ever stop thinking about that swelling and what is causing it and what is causing the uptake in his neck nodes that are left.  This cancer can move so fast and that scares me beyond belief.  I am always here if you need someone to talk to!  ♥Jaime

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                      bigday1004
                      Participant

                        Ohhh my Jaime!!!!!!! I just got done reading you message on facebook before coming on here and was suprised and happy to see your message on here!!!!!!  It scares me also how fast this cancer spreads. Never in my mind while I was growing up and planning our wedding did I think that a couple months after our 1 year anniversary we'd be going through this. I can't get it off my mind what the spot is on his lung and if it's cancer or not.  I know though we will get through this and having someone caring like you not only on facebook but on here will help termendously. Thank you!!!!!!

                        <3 Tiffany

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                        bigday1004
                        Participant

                          Ohhh my Jaime!!!!!!! I just got done reading you message on facebook before coming on here and was suprised and happy to see your message on here!!!!!!  It scares me also how fast this cancer spreads. Never in my mind while I was growing up and planning our wedding did I think that a couple months after our 1 year anniversary we'd be going through this. I can't get it off my mind what the spot is on his lung and if it's cancer or not.  I know though we will get through this and having someone caring like you not only on facebook but on here will help termendously. Thank you!!!!!!

                          <3 Tiffany

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                          Jaime.30
                          Participant

                            Always here my friend!  We have had several false alarms with Eston but thankfully he remains at stage III and is recovering from his surgeries and still going strong…never give up hope….and sometimes when you feel like you need to scream I say do it.  I don't let loose around Eston but when home alone…I have been known to have a mini fit…Hoping I am not alone in that…or now I will be known as the crazy lady..lol.  We melanoma families have to stick together! ♥♥

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                            Jaime.30
                            Participant

                              Always here my friend!  We have had several false alarms with Eston but thankfully he remains at stage III and is recovering from his surgeries and still going strong…never give up hope….and sometimes when you feel like you need to scream I say do it.  I don't let loose around Eston but when home alone…I have been known to have a mini fit…Hoping I am not alone in that…or now I will be known as the crazy lady..lol.  We melanoma families have to stick together! ♥♥

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                            christie
                            Participant

                              Sounds like you are going through what my partner and I are going through!  Dennis went for a biopsy in May and came out with major surgery.  They removed a mole on his side and the lymph nodes under his arm.  It  came back stage 4 melanoma.  He's had the month of the high dose interferon, then radiation for a month and is starting the lower dose 3 times a week on Monday.  They have also found a spot on his lung that they are just going to watch for now.

                              I had lung surgery last summer (not related to Melanoma) so if you have any questions I'd be happy to try and answer them for you. 

                              My thoughts are with you!

                              Christie

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                              christie
                              Participant

                                Sounds like you are going through what my partner and I are going through!  Dennis went for a biopsy in May and came out with major surgery.  They removed a mole on his side and the lymph nodes under his arm.  It  came back stage 4 melanoma.  He's had the month of the high dose interferon, then radiation for a month and is starting the lower dose 3 times a week on Monday.  They have also found a spot on his lung that they are just going to watch for now.

                                I had lung surgery last summer (not related to Melanoma) so if you have any questions I'd be happy to try and answer them for you. 

                                My thoughts are with you!

                                Christie

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                                Jim M.
                                Participant

                                  It would be helpful if you could find some kind of support locally. If more stuff continues to get bottled up, well that's not what you need. Coming here is great and everyone is supportive but the face to face support is wonderful. Maybe there is a support group? If possible take time for yourself. I pray God guides you and Tom to wholeness and health.

                                   God Bless,

                                   Jim M.

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                                  Jim M.
                                  Participant

                                    It would be helpful if you could find some kind of support locally. If more stuff continues to get bottled up, well that's not what you need. Coming here is great and everyone is supportive but the face to face support is wonderful. Maybe there is a support group? If possible take time for yourself. I pray God guides you and Tom to wholeness and health.

                                     God Bless,

                                     Jim M.

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                                    EricNJill
                                    Participant

                                      I know so much about what you are going through.  We are so afraid Eric will lose his job and lose his insurance.  It is so very scarey.  He has worked all through his treatments for fear of losing everything.  He was in the ICU with a platelet level of 13 telling the critical care doctor he had to get out and go to work!  It's amazing the dedication our husbands have to our families.  I fear one day though, he just won't be able to do it any longer and that will be so hard on him.

                                      I also know how you feel.  I'm afraid to talk to him about my feelings and my friends just don't understand what I'm going through.  Being a caregiver for our husbands is so rewarding and loving, but we have to remember to take care of ourselves.  I think I was on the edge of exhaustion the other night.  I literally colapsed in bed at 5 p.m.  I just couldn't do it anymore I was so tired.

                                      My advice would be to confide in a friend you can trust and remember to take care of yourself.  I will be thinking of you.

                                       

                                      JillNEric in OH

                                       

                                       

                                       

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                                      EricNJill
                                      Participant

                                        I know so much about what you are going through.  We are so afraid Eric will lose his job and lose his insurance.  It is so very scarey.  He has worked all through his treatments for fear of losing everything.  He was in the ICU with a platelet level of 13 telling the critical care doctor he had to get out and go to work!  It's amazing the dedication our husbands have to our families.  I fear one day though, he just won't be able to do it any longer and that will be so hard on him.

                                        I also know how you feel.  I'm afraid to talk to him about my feelings and my friends just don't understand what I'm going through.  Being a caregiver for our husbands is so rewarding and loving, but we have to remember to take care of ourselves.  I think I was on the edge of exhaustion the other night.  I literally colapsed in bed at 5 p.m.  I just couldn't do it anymore I was so tired.

                                        My advice would be to confide in a friend you can trust and remember to take care of yourself.  I will be thinking of you.

                                         

                                        JillNEric in OH

                                         

                                         

                                         

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                                        lhaley
                                        Participant

                                          My husband is my caretaker (I am stage IV with active disease). He also keeps everything bottled up but I can see it. I wish he would talk to me a little more about his feelings also!  In my town there is a couples support group. It's not for melanoma but I still think it would be worthwhile, especially for him. I've mentioned it and will mention it again.  Maybe you can find something like that in your area also. 

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                                          lhaley
                                          Participant

                                            My husband is my caretaker (I am stage IV with active disease). He also keeps everything bottled up but I can see it. I wish he would talk to me a little more about his feelings also!  In my town there is a couples support group. It's not for melanoma but I still think it would be worthwhile, especially for him. I've mentioned it and will mention it again.  Maybe you can find something like that in your area also. 

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                                              Jaime.30
                                              Participant

                                                My husband asks me sometimes…who do I think I am fooling with my brave face on all the time.  I know he would like me to express my fears more often but he is so positive and Strong and I hate to bring him down with my worries.

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                                                Jaime.30
                                                Participant

                                                  My husband asks me sometimes…who do I think I am fooling with my brave face on all the time.  I know he would like me to express my fears more often but he is so positive and Strong and I hate to bring him down with my worries.

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                                                Laurie from maine
                                                Participant

                                                  Hi,

                                                  I am stage 3 and NED for almost 2 years now!  There are positive stories out there, and people on this site can help you and your husband as you go thru this.   It is a very hard thing.  I really believe sometimes it is worse emotionally on caretakers as they feel helpless and no control over any of it.   I would like you to know just that you being there and asking is today a good or bad day is a huge thing for the other person., or at least it was for me.   

                                                  But I hope you can find yourself a support group as you fight thru this.  This is just as hard emotionally on you as it is the patient.  I found my husband went into a big depression when  was on low dose interferon.  It was very hard for him to see me lose weight, and be tired etc.  – I wished he could have found someone or website that he could write to – to help him go thru it.  I hope you can write to other caretakers here on this site and they can help you.  Keep us updated and posted.

                                                  take care

                                                  laurie radiation, high dose interferon, 6 months low dose interferon

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                                                  Laurie from maine
                                                  Participant

                                                    Hi,

                                                    I am stage 3 and NED for almost 2 years now!  There are positive stories out there, and people on this site can help you and your husband as you go thru this.   It is a very hard thing.  I really believe sometimes it is worse emotionally on caretakers as they feel helpless and no control over any of it.   I would like you to know just that you being there and asking is today a good or bad day is a huge thing for the other person., or at least it was for me.   

                                                    But I hope you can find yourself a support group as you fight thru this.  This is just as hard emotionally on you as it is the patient.  I found my husband went into a big depression when  was on low dose interferon.  It was very hard for him to see me lose weight, and be tired etc.  – I wished he could have found someone or website that he could write to – to help him go thru it.  I hope you can write to other caretakers here on this site and they can help you.  Keep us updated and posted.

                                                    take care

                                                    laurie radiation, high dose interferon, 6 months low dose interferon

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