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Just a little update

Forums Caregiver Community Just a little update

  • Post
    Jaime.30
    Participant

    I am newer to the board but have shared our story with a few of you so I thought I would post a little update. I am the caregiver to my husband  and in September he had a Craniotomy to remove 3 small clustered lesions which turned out NOT to be Melanoma but inflammation and he recently had MRi's done of his brain and spine again and still nothing there so they have determined that it was more than likely caused by the radiation that he had after the primary was first excised.  It was on his ear and the inflammation was on the same side just above the ear in the brain.

    I am newer to the board but have shared our story with a few of you so I thought I would post a little update. I am the caregiver to my husband  and in September he had a Craniotomy to remove 3 small clustered lesions which turned out NOT to be Melanoma but inflammation and he recently had MRi's done of his brain and spine again and still nothing there so they have determined that it was more than likely caused by the radiation that he had after the primary was first excised.  It was on his ear and the inflammation was on the same side just above the ear in the brain.  So he was declared NED and still at stage III and not stage IV yet.  At his next appointment his doctor felt something in his neck dissection scar that he feels is suspicious so off for a CT scan….still waiting on those results but  he has had needle biopsies done in this area before and all has come out just fine.  We decided when the doctor was concerned that after so many false alarms and so many late nights talking about the what ifs of it all that this time would be different..we were not going to worry or discuss what could happen if it turns out to be melanoma this time around.  I always worry…my nature is a nurturer and a worrier but my husband is a very calm and one day at a time kind of guy and last night he says to me…" So what are we going to do if this is a tumor?"  In all honesty I wanted to scream and throw a fit…and say I can not handle going there right  now…that I have a horrible feeling that this stupid cancer is going to take you away from me and away from our dreams that we are still planning …but I didn't I was a good wife and I told him we will handle it together and we would find the best damn plan we could find to get rid of it.  It is so hard to not know.  He is finally feeling better and getting ready to go back to work.  He was very weak on the left after the surgery but is doing much better and the lingering Interferon side effects have finally made their exit for the most part…If Melanoma does come back…ok…off to battle we will go…but I just want him to have some time to feel good…to be able to do the things he wants without being sick from treatments.  I wish so badly I could just take this from him…I feel so totally helpless a lot of the time.  I guess I ended up venting a little more than updating….sorry. :o)  I guess the only question is does it ever get better…does the thought of a reccurrance ever stop sending families into complete and utter melt down emotionally??  I have met several women who have lost their husbands to this beast and they have done so with Grace and strength and I just hope and pray I can keep being strong for my husband the way they have.  I do really well on the outside but inside sometimes…not so much!

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  • Replies
      Phil S
      Participant

      I think the hardest thing about living with cancer is the constant unknown.  As a caretaker, at times, I deal with it okay and go about my daily life, and at other times I feel so sad and hopeless.  I feel sorry for myself and wonder why our family has to deal with this disease.   Like all of us, I never wanted to live this life, with worrying about the next path of a cancer cell, I just wanted to enjoy my husband and young children, and plan vacations, and see our daughter's dance recitals, and our son's karate lessons. But, now those things get clouded over, as we have really big worries about cancer coming back, and is that cold that my husband is still suffering from, really just a cold and cough.

      I understand everything you said, and I think its great that you came to this Bulletin to vent. What can any of us say, some days are easier than others, I also try to put on a brave front, and I will decorate the house for Christmas even though the old spark is missing.  I get support from family and friends, but it is really my faith that carries me along on those darkest moments.  So, be gentle with yourself when you feel emotionally down and seek whatever works for you during those times.  And, please know that you are not alone, alot of us struggle with the same fears, doubts, and sadness.  I do get needed information from this Board, and believe that there are new and better treatments ahead for melanoma patients. Take care!  Valerie (Phil's Wife)

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      Phil S
      Participant

      I think the hardest thing about living with cancer is the constant unknown.  As a caretaker, at times, I deal with it okay and go about my daily life, and at other times I feel so sad and hopeless.  I feel sorry for myself and wonder why our family has to deal with this disease.   Like all of us, I never wanted to live this life, with worrying about the next path of a cancer cell, I just wanted to enjoy my husband and young children, and plan vacations, and see our daughter's dance recitals, and our son's karate lessons. But, now those things get clouded over, as we have really big worries about cancer coming back, and is that cold that my husband is still suffering from, really just a cold and cough.

      I understand everything you said, and I think its great that you came to this Bulletin to vent. What can any of us say, some days are easier than others, I also try to put on a brave front, and I will decorate the house for Christmas even though the old spark is missing.  I get support from family and friends, but it is really my faith that carries me along on those darkest moments.  So, be gentle with yourself when you feel emotionally down and seek whatever works for you during those times.  And, please know that you are not alone, alot of us struggle with the same fears, doubts, and sadness.  I do get needed information from this Board, and believe that there are new and better treatments ahead for melanoma patients. Take care!  Valerie (Phil's Wife)

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        Jaime.30
        Participant

        Thank you for your reply!  As hard and as sad as it is that other families have to go through all of this it is a big help to know that we are not alone and other people know what it is like to deal with this.  I know people are surviving this every day.  We just got a phone call letting us know that the CT scan showed that everything is ok!  It is lymphedema and scar tissue causing all of his neck pain and what they thought may be a mass…so for now he is stage III NED and that is great news.  This has been the hardest 19 months of our lives and I am sure there will be more to come but we are going to try to not worry about that and be happy where we are now.

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        Jaime.30
        Participant

        Thank you for your reply!  As hard and as sad as it is that other families have to go through all of this it is a big help to know that we are not alone and other people know what it is like to deal with this.  I know people are surviving this every day.  We just got a phone call letting us know that the CT scan showed that everything is ok!  It is lymphedema and scar tissue causing all of his neck pain and what they thought may be a mass…so for now he is stage III NED and that is great news.  This has been the hardest 19 months of our lives and I am sure there will be more to come but we are going to try to not worry about that and be happy where we are now.

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      EmilyandMike
      Participant

      Jaime – I feel EXACTLY the same way.  I could have written this myself.   I am a total stress case and my husband is calm most of the time but he does get scared around scan time.  Melanoma is so emotionally devastating…it is so sneaky – always lurking.  Its just so hard to deal with mentally.  My biggest fear is having to watch my husband suffer.  I just dont think I could take it. But somehow, people make it through with grace and strengh as you said. 

      This board is my therapy right now, but I am thinking it would be good to get some kind of professional help. Even though your husband is the one with melanoma, you have also been through a lot and you need to remember to take care of yourself.  It is hard being the caregiver.  It is hard being the patient.  It just sucks…but then I realize we have a deep appreication for one another and life that many people who arent facing cancer, might not have… and that makes me happy.  What also keeps me sane is spreading the word about melanoma and doing fundraising.  I am actually hosting my first event this weekend benefiting MRF in the San Francisco Bay Area and I created a page on Firstgiving for my husband – http://www.firstgiving.com/mikemcauliffe.   

      Keep in touch and sending my best to you for calm and peace.

      Emily (wife of Mike, stage 3a -15 mos NED)

      http://www.emandmichael.com

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      EmilyandMike
      Participant

      Jaime – I feel EXACTLY the same way.  I could have written this myself.   I am a total stress case and my husband is calm most of the time but he does get scared around scan time.  Melanoma is so emotionally devastating…it is so sneaky – always lurking.  Its just so hard to deal with mentally.  My biggest fear is having to watch my husband suffer.  I just dont think I could take it. But somehow, people make it through with grace and strengh as you said. 

      This board is my therapy right now, but I am thinking it would be good to get some kind of professional help. Even though your husband is the one with melanoma, you have also been through a lot and you need to remember to take care of yourself.  It is hard being the caregiver.  It is hard being the patient.  It just sucks…but then I realize we have a deep appreication for one another and life that many people who arent facing cancer, might not have… and that makes me happy.  What also keeps me sane is spreading the word about melanoma and doing fundraising.  I am actually hosting my first event this weekend benefiting MRF in the San Francisco Bay Area and I created a page on Firstgiving for my husband – http://www.firstgiving.com/mikemcauliffe.   

      Keep in touch and sending my best to you for calm and peace.

      Emily (wife of Mike, stage 3a -15 mos NED)

      http://www.emandmichael.com

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      bluepeople
      Participant

       You have just written what I have been thinking almost non-stop since last August when my hubby was diagnosed!  It is so hard to keep up a positive, upbeat facade, but what else can you do?  Of course we have touched upon the what-ifs together a few times, but mostly I keep my worrying to myself.  I guess I feel a little numb because cancer has hit my family so hard (both parents have passed away from cancer, my dad from melanoma) and my father-in-law also has melanoma (had it about 30 years ago, and now they just found 2 small spots on his back).  I guess you can't really dwell on it, we have a 1-yr old that keeps us on our toes and a girl-crazy 14-yr old that we are trying to rein in :)  so we have lots of stuff to keep our minds off it, but this week my hubby started interferon so I guess it is hitting me harder this week.  I have found this board to be very helpful, just reading other people's stories and knowing that we are not alone in this whole thing.  Good luck and know that our thoughts are with you. 

      Akilyn

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      bluepeople
      Participant

       You have just written what I have been thinking almost non-stop since last August when my hubby was diagnosed!  It is so hard to keep up a positive, upbeat facade, but what else can you do?  Of course we have touched upon the what-ifs together a few times, but mostly I keep my worrying to myself.  I guess I feel a little numb because cancer has hit my family so hard (both parents have passed away from cancer, my dad from melanoma) and my father-in-law also has melanoma (had it about 30 years ago, and now they just found 2 small spots on his back).  I guess you can't really dwell on it, we have a 1-yr old that keeps us on our toes and a girl-crazy 14-yr old that we are trying to rein in :)  so we have lots of stuff to keep our minds off it, but this week my hubby started interferon so I guess it is hitting me harder this week.  I have found this board to be very helpful, just reading other people's stories and knowing that we are not alone in this whole thing.  Good luck and know that our thoughts are with you. 

      Akilyn

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        Wendi Lynn
        Participant

        Akilyn,

        How is your husband doing on the Interferon?  I, too, started it this week and had read as much as I could as to what I should expect, but still feel like I haven't experienced everything that is to come with the side effects.  Just finished my 4th dose and decided to go back to work afterwards since my Tues & Weds doses went okay with no major reactions.  Just looking to compare notes :)

        Going back on topic tho, my husband is under a tremendous amount of stress and I'm doing everything in my power not to complain or make things more difficult.  And I have 3 teenage boys at home that he's keeping on task and making sure they are helping out, but his job (police officer) and the fact that his father is in the hospital with liver/kidney failure and then me are all pushing him to the max.  I feel terrible that I don't have the energy to help him get through this better with his dad.  The saying "when it rains it pours" has never been more true for us.

        I had a short stint at caregiving for my mom, but that is nothing compared to the long term care that you all are giving your loved ones.  And, although we may not say it, we couldn't do it without you!  So, thank you to you all!

        Wendi

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        Wendi Lynn
        Participant

        Akilyn,

        How is your husband doing on the Interferon?  I, too, started it this week and had read as much as I could as to what I should expect, but still feel like I haven't experienced everything that is to come with the side effects.  Just finished my 4th dose and decided to go back to work afterwards since my Tues & Weds doses went okay with no major reactions.  Just looking to compare notes :)

        Going back on topic tho, my husband is under a tremendous amount of stress and I'm doing everything in my power not to complain or make things more difficult.  And I have 3 teenage boys at home that he's keeping on task and making sure they are helping out, but his job (police officer) and the fact that his father is in the hospital with liver/kidney failure and then me are all pushing him to the max.  I feel terrible that I don't have the energy to help him get through this better with his dad.  The saying "when it rains it pours" has never been more true for us.

        I had a short stint at caregiving for my mom, but that is nothing compared to the long term care that you all are giving your loved ones.  And, although we may not say it, we couldn't do it without you!  So, thank you to you all!

        Wendi

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        bluepeople
        Participant

        Hi Wendi,

        Lance is doing pretty well with the interferon.  He mostly just feels tired and gets headaches.  He's had problems getting comfortable at night due to some body aches, so he hasn't been getting as much sleep which doesn't help.  He hasn't been eating much, so I'm trying to work on that with him, just to help keep his energy up.  I think it's a combination of the fact that he is tired, and he has that bad taste in his mouth.  He is going out to lunch with some friends tomorrow so hopefully they'll get him to eat more.  He's taking this week off just to see how it goes, and he will probably go back to work next week, at least part time.  He's just trying to take it easy.   All in all, so far it hasn't been too bad, hopefully these 4 weeks go fast.  I just wonder if it will get better when he does the low dose shots, or it will stay about the same?  Good luck and I hope things stay manageable for you!

        Akilyn

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        bluepeople
        Participant

        Hi Wendi,

        Lance is doing pretty well with the interferon.  He mostly just feels tired and gets headaches.  He's had problems getting comfortable at night due to some body aches, so he hasn't been getting as much sleep which doesn't help.  He hasn't been eating much, so I'm trying to work on that with him, just to help keep his energy up.  I think it's a combination of the fact that he is tired, and he has that bad taste in his mouth.  He is going out to lunch with some friends tomorrow so hopefully they'll get him to eat more.  He's taking this week off just to see how it goes, and he will probably go back to work next week, at least part time.  He's just trying to take it easy.   All in all, so far it hasn't been too bad, hopefully these 4 weeks go fast.  I just wonder if it will get better when he does the low dose shots, or it will stay about the same?  Good luck and I hope things stay manageable for you!

        Akilyn

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      Jaime.30
      Participant

      Thank you all for responding.  My husband Eston was on Interferon until they thought that he had the brain lesions.  He completed the 20 infusion doses and then 9 months of the at home shots.  He worked the whole time and did very well but did lose some weight from throwing up quite a bit and he had horrible horrible joint pain.  Towards the end of his shots he seemed to have what we call interferon fog…where his memory was just not as sharp as normal.  It took a couple months but now almost all of his side effects from the Interferon are gone.  We were a little disappointed that he did not get to complete the last 2 months of the at home shots but the doctors felt, after we knew it was not disease progression that he more than likely would not benefit from starting up the shots again and it was time to get back on the road of recovery instead of making him go through more shots.  I always feel as the caregiver that I should do anything and everything for him and do it with a smile on my face but sometimes I just get so tired and feel like my emotions are going to burst out of my chest.  He is my best friend and I am only 30 and he is 33 and we want to start a family but we don't even know if we can do that now..and I worry is he really finally in remission and is it the right time…not to mention the lack of his income these past 4 months.  We have been able to stay a float on our own but I will admit that if he was not going back to work right now we would be at a point where we are in trouble.  It is such a roller coaster…we got good news today so of course we are very very thankful for that and are ready to try to get back to whatever our new normal will be like.  Eston has always said he thinks this whole thing has been worse for me because we react to it differently and because he is not the one waiting through the surgeries and milking drains and sitting up late nights…he always says I sleep through most of the bad stuff and then have some one wait on me hand and foot for a few weeks.  He does not even worry about losing the battle for himself…he says he knows where he is going…he worries about all of us down here with our broken hearts.  He is a great husband and I just want to do the best I can for him.

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      Jaime.30
      Participant

      Thank you all for responding.  My husband Eston was on Interferon until they thought that he had the brain lesions.  He completed the 20 infusion doses and then 9 months of the at home shots.  He worked the whole time and did very well but did lose some weight from throwing up quite a bit and he had horrible horrible joint pain.  Towards the end of his shots he seemed to have what we call interferon fog…where his memory was just not as sharp as normal.  It took a couple months but now almost all of his side effects from the Interferon are gone.  We were a little disappointed that he did not get to complete the last 2 months of the at home shots but the doctors felt, after we knew it was not disease progression that he more than likely would not benefit from starting up the shots again and it was time to get back on the road of recovery instead of making him go through more shots.  I always feel as the caregiver that I should do anything and everything for him and do it with a smile on my face but sometimes I just get so tired and feel like my emotions are going to burst out of my chest.  He is my best friend and I am only 30 and he is 33 and we want to start a family but we don't even know if we can do that now..and I worry is he really finally in remission and is it the right time…not to mention the lack of his income these past 4 months.  We have been able to stay a float on our own but I will admit that if he was not going back to work right now we would be at a point where we are in trouble.  It is such a roller coaster…we got good news today so of course we are very very thankful for that and are ready to try to get back to whatever our new normal will be like.  Eston has always said he thinks this whole thing has been worse for me because we react to it differently and because he is not the one waiting through the surgeries and milking drains and sitting up late nights…he always says I sleep through most of the bad stuff and then have some one wait on me hand and foot for a few weeks.  He does not even worry about losing the battle for himself…he says he knows where he is going…he worries about all of us down here with our broken hearts.  He is a great husband and I just want to do the best I can for him.

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        Melanoma Mom
        Participant

        I have been on both sides of the fence …. I am a stage 4 thyroid cancer survivor and now I am the caregiver (well, continued caregiver!) to my 14 year old son who was diagnosed with melanoma in September. Both scenarios completely suck. BUT – we have our good days and our bad and we learn to live with this new "reality". 

        I personally have found professional counseling extremely helpful because it is someone who is not emotionally invested in the situation and at the same time, they can provide such support and guidance that might not be possible to get from family and close friends, only because they are also worried.

        We are all there for you, Jaime, and I am confident that you will find the strength when you need it. But you don't have to be  strong 100% of the time.

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        Melanoma Mom
        Participant

        I have been on both sides of the fence …. I am a stage 4 thyroid cancer survivor and now I am the caregiver (well, continued caregiver!) to my 14 year old son who was diagnosed with melanoma in September. Both scenarios completely suck. BUT – we have our good days and our bad and we learn to live with this new "reality". 

        I personally have found professional counseling extremely helpful because it is someone who is not emotionally invested in the situation and at the same time, they can provide such support and guidance that might not be possible to get from family and close friends, only because they are also worried.

        We are all there for you, Jaime, and I am confident that you will find the strength when you need it. But you don't have to be  strong 100% of the time.

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        Jaime.30
        Participant

        I am so sorry that your son has to go through Melanoma at all let alone at such a young age. What a brave guy he is to go through so much.  It is great that you are a survivor of your cancer as well!!  I think that is one thing I would love to be able to get through my head is that I do not have to be strong ALL of the time.  I had a friend remind me that my husband knows I struggle no matter how I try to hide it and she is so right!  Thanks for the support and if there is anything I can do to help you please let me know!

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        Melanoma Mom
        Participant

        Jaime, if you are facebook, you should friend me. 

        Elizabeth McEvoy Henderson

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        Melanoma Mom
        Participant

        Jaime, if you are facebook, you should friend me. 

        Elizabeth McEvoy Henderson

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        Jaime.30
        Participant

        I am on facebook..I will send you a friend request. :o)

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        Jaime.30
        Participant

        I am on facebook..I will send you a friend request. :o)

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        Jaime.30
        Participant

        I am so sorry that your son has to go through Melanoma at all let alone at such a young age. What a brave guy he is to go through so much.  It is great that you are a survivor of your cancer as well!!  I think that is one thing I would love to be able to get through my head is that I do not have to be strong ALL of the time.  I had a friend remind me that my husband knows I struggle no matter how I try to hide it and she is so right!  Thanks for the support and if there is anything I can do to help you please let me know!

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      MariaH
      Participant

      You have put into words what many of us caregivers have felt. My husband was diagnosed stage 3 in November of 2008 and there were many a night when I would sit in the basement next to the woodstove (away from the kids and hubby) and just bawl my eyes out.  But, that was 2 years ago…. 2 years that we lived life to the absolute fullest.  It has never been far from our minds, but the "pit in the stomach" fear has been put on a shelf.  There is a chance that he will head into an appointment and we'll get news that we did not expect, but we don't dwell on that as often anymore.  And Dave always makes a point of saying when being asked that he "had" melanoma, not "has".  He is moving on with his life and not letting this get the best of him.  And I, quite frankly, am happy to be right beside him.

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      MariaH
      Participant

      You have put into words what many of us caregivers have felt. My husband was diagnosed stage 3 in November of 2008 and there were many a night when I would sit in the basement next to the woodstove (away from the kids and hubby) and just bawl my eyes out.  But, that was 2 years ago…. 2 years that we lived life to the absolute fullest.  It has never been far from our minds, but the "pit in the stomach" fear has been put on a shelf.  There is a chance that he will head into an appointment and we'll get news that we did not expect, but we don't dwell on that as often anymore.  And Dave always makes a point of saying when being asked that he "had" melanoma, not "has".  He is moving on with his life and not letting this get the best of him.  And I, quite frankly, am happy to be right beside him.

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      kristylee92
      Participant
      I was one of the primary caregivers for my father and since I’m a nurse my family thrust me into the job of going to all his doctor appointments. I wanted to scream, cry, and not get out of bed some days because of overwhelming stress. The hardest part for me was being the strong one for everyone. My father and the rest of my family were in denial the last 6 months and refused to hear what the doctors had to say. All they heard is that they would continue treatments until the end. I didn’t have the heart to squash my father’s hope so I felt it was better not to tell him. When he did realize he was not going to recover he suddenly became scared to be alone because he was afraid of dying. I would break down and cry in the car, shower, or at work, whenever he wasn’t around me. I finally decided that I needed to see a counselor due to my insomnia and I could no longer focus on anything. I was diagnosed with situational depression. I learned that it was ok for me to have those emotions. I know it’s hard, but try to enjoy the good days he has. He appreciates what you are doing for him more than you will ever know. I’ve found that talking about it is the best therapy for me. Regardless of how overwhelmed you may feel, you will never regret taking care of him and it will make your bond stronger. Keep your hopes up, my aunt was diagnosed with Melanoma 8 yrs ago and she is doing well. She has had 5 surgeries to the same area because of recurrence but has continued to follow up with her physician which allows her to catch it early. I will keep you and your family in my prayers.

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      kristylee92
      Participant
      I was one of the primary caregivers for my father and since I’m a nurse my family thrust me into the job of going to all his doctor appointments. I wanted to scream, cry, and not get out of bed some days because of overwhelming stress. The hardest part for me was being the strong one for everyone. My father and the rest of my family were in denial the last 6 months and refused to hear what the doctors had to say. All they heard is that they would continue treatments until the end. I didn’t have the heart to squash my father’s hope so I felt it was better not to tell him. When he did realize he was not going to recover he suddenly became scared to be alone because he was afraid of dying. I would break down and cry in the car, shower, or at work, whenever he wasn’t around me. I finally decided that I needed to see a counselor due to my insomnia and I could no longer focus on anything. I was diagnosed with situational depression. I learned that it was ok for me to have those emotions. I know it’s hard, but try to enjoy the good days he has. He appreciates what you are doing for him more than you will ever know. I’ve found that talking about it is the best therapy for me. Regardless of how overwhelmed you may feel, you will never regret taking care of him and it will make your bond stronger. Keep your hopes up, my aunt was diagnosed with Melanoma 8 yrs ago and she is doing well. She has had 5 surgeries to the same area because of recurrence but has continued to follow up with her physician which allows her to catch it early. I will keep you and your family in my prayers.

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      aws803
      Participant

      Hi  Im so sorry to hear all of your experiences

      My hubby just had a biopsy and waiting the results… his mum, aunty, uncle and grandparents have all died from Melanoma and the waiting game is killing me. We just went for a regular skin checkup last Saturday and had a suspicious one removed it was 8mm wide but very deep, the dr said it was down to his fatty tissue and the deepest one that he has cut out?? Is this good, bad or what… I have no idea about any of this but its very scary.

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      aws803
      Participant

      Hi  Im so sorry to hear all of your experiences

      My hubby just had a biopsy and waiting the results… his mum, aunty, uncle and grandparents have all died from Melanoma and the waiting game is killing me. We just went for a regular skin checkup last Saturday and had a suspicious one removed it was 8mm wide but very deep, the dr said it was down to his fatty tissue and the deepest one that he has cut out?? Is this good, bad or what… I have no idea about any of this but its very scary.

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      Jaime.30
      Participant

      I wish I had some more time to write but we are getting ready to go to Eston's oncology appointment.  We hoping that he will be moving to being  seen every three months.  6 weeks ago his liver levels were off and his blood counts as well, that could have been from the Interferon lingering in his system.  So today we are hoping all has returned to normal or it will be off for a liver ultrasound to "make sure" all is ok.  One thing I know for absolute sure is I will NEVER regret taking care of him…ever.  I love to take care of him and had to do so in the past because of knee injuries. I am feeling better and I do understand that worrying about this all the time will never change the outcome no matter what.  Its like I am wasting the good time worrying about something that may never happen.  I have also come to the conclusion that even though I want all of this to be over that if it being over means I lose him then I would much rather keep doing it this way.  I would never want him to have to keep going if it were really bad and he was truly suffering but for the next 50 years we have to fight Melanoma then so be it.  I have felt that by opening up and just getting a lot of this off my chest I feel a whole lot stronger and connecting with people who know these fears has helped tremondously…I dont feel like such a crazy person. 

      Thank you all for replying!  Having a support system makes all the difference.  If any of you are on facebook feel free to add me.  I may not always have my own situation under control but I am a good listener!  Jaime Smith and I have a black and white picture. If there a lot of Jaime Smiths I think you can narrow it down with the city which is Indianapolis.

      I am so sorry you are in the waiting game…that has always been the hardest for us…just the not knowing.  Eston always says no matter what the results I just want to know so we can kick butt if we have to or so we can relax a bit.  I will be keeping your families in my prayers and I so appreciate you all reaching out to us.

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      Jaime.30
      Participant

      I wish I had some more time to write but we are getting ready to go to Eston's oncology appointment.  We hoping that he will be moving to being  seen every three months.  6 weeks ago his liver levels were off and his blood counts as well, that could have been from the Interferon lingering in his system.  So today we are hoping all has returned to normal or it will be off for a liver ultrasound to "make sure" all is ok.  One thing I know for absolute sure is I will NEVER regret taking care of him…ever.  I love to take care of him and had to do so in the past because of knee injuries. I am feeling better and I do understand that worrying about this all the time will never change the outcome no matter what.  Its like I am wasting the good time worrying about something that may never happen.  I have also come to the conclusion that even though I want all of this to be over that if it being over means I lose him then I would much rather keep doing it this way.  I would never want him to have to keep going if it were really bad and he was truly suffering but for the next 50 years we have to fight Melanoma then so be it.  I have felt that by opening up and just getting a lot of this off my chest I feel a whole lot stronger and connecting with people who know these fears has helped tremondously…I dont feel like such a crazy person. 

      Thank you all for replying!  Having a support system makes all the difference.  If any of you are on facebook feel free to add me.  I may not always have my own situation under control but I am a good listener!  Jaime Smith and I have a black and white picture. If there a lot of Jaime Smiths I think you can narrow it down with the city which is Indianapolis.

      I am so sorry you are in the waiting game…that has always been the hardest for us…just the not knowing.  Eston always says no matter what the results I just want to know so we can kick butt if we have to or so we can relax a bit.  I will be keeping your families in my prayers and I so appreciate you all reaching out to us.

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The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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