The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Gamma Knife Surgery – Update The Gambler

Forums Caregiver Community Gamma Knife Surgery – Update The Gambler

  • Post
    lovingwifedeb
    Participant

      After Bob’s brain surgery on January 12th it had been decided that he needed to be treated with Gamma Knife Surgery. This procedure was done on Tuesday, February 1st, it was a long process that started at 6 in the morning and we walked out of there by Noon. In the two weeks after Bob’s brain surgery his tumor had started to regrow and instead of the 1/2 hour of radiation planned his doctor decided to be on the aggressive side and treat him with 2 hours.

      As this news was being delivered to me by his doctor the words – “larger after surgery” & “regrowing” kept echoing in my head. Bob was prepped and snoring in his chair ready to be rolled away for his radiation treatment. This whole morning was really frightening to me and so was this news of tumor regrowing and as everyone left the room I couldn’t hold back my tears any longer. I realized that I hadn’t really cried since last summer when I had my meltdown. This treatment was getting the best of me today and I couldn’t sort my feelings in all this craziness. Thinking back on the past weeks… one doctor saying he got all the tumor and removed all lymph nodes, now Bob is cancer free, that was in July. Then a brain tumor being removed with a doctor saying he got “most all” of it, that was in January. Now another doctor saying yes, this time he thinks he will get it all with gamma knife, this is February. We are talking 7 months… yes, I want to believe…

      I find my heart tearing apart in my chest and my tears rolling silently down my face as I spent 2 hours waiting for Bob to return to me. I have to wonder would I have what it takes as Bob does to wake up each morning knowing it might not be my best days any longer.  I admire him more and more for the man he is and strives to be. He does not complain because of his diagnosis but strives to do his best with what he has been given.

      I hate this cancer with every cell of my being. Since Bob’s diagnosis I have read there are a lot of patients that have learned to be grateful for having cancer. I may be just the caregiver but I feel damn close to the subject of cancer and everything I have learned so far. I am not that grateful yet. I am not sure Bob is there yet either. BUT… I am reaching in places inside myself that I did not know existed and had it not been for Bob’s diagnosis I don’t know if I could have explored myself this deeply if for any other reason. I’m sure I have a long ways to go and I don’t look forward IF this cancer road takes me there.

      So, we wait until March 7th for one more test, one more deep breath.

      Peace to all.

      Deb

      lovingwife to Bob, stage 4

    Viewing 11 reply threads
    • Replies
        Vermont_Donna
        Participant

          Dear Deb,

          let it all out, the anger and despair…but keep your HOPE alive! Maybe Bob doesnt have NED status yet but believe he will get there. It sounds like you are in good hands with the treatment.

          Hugs,

          Vermont_Donna, stage 3a

          Vermont_Donna
          Participant

            Dear Deb,

            let it all out, the anger and despair…but keep your HOPE alive! Maybe Bob doesnt have NED status yet but believe he will get there. It sounds like you are in good hands with the treatment.

            Hugs,

            Vermont_Donna, stage 3a

            Sherron
            Participant

              Hi Deb, I have looking for a post from you…I have been thinking about you and your husband Bob and what all was going on.  Thanks for updating for us.  I know the fear, the anxiety, all the feeling you are describing.  It is hard to be the caregiver, the wife, watching this happening to your husband and there is nothing you can do, really, except wait, wait, wait, pray, and like Donna said never give up HOPE.  My Jim was the eternal optomist, I do not know how he did, if he did it for himself, for me, or for the both of us.  Even when we moved to Hospice, Jim said we would just be there a little while until he got his strength back.  I don't know if he really believe that, or it was an act for me, him, both of us….He was so incredibly strong…I know how hard it is watch your husband suffer and you can do nothing.  I pray things get better for you and Bob soon.  I can't believe Jim has be gone since Nov 30th….still seems unreal to me at times.  I am starting in grief counseling this next week…..

              Remember to keep close to God, pray, and never give up that Hope!

              Take Care,

              Sherron, wife to Jim FOREVER

              Sherron
              Participant

                Hi Deb, I have looking for a post from you…I have been thinking about you and your husband Bob and what all was going on.  Thanks for updating for us.  I know the fear, the anxiety, all the feeling you are describing.  It is hard to be the caregiver, the wife, watching this happening to your husband and there is nothing you can do, really, except wait, wait, wait, pray, and like Donna said never give up HOPE.  My Jim was the eternal optomist, I do not know how he did, if he did it for himself, for me, or for the both of us.  Even when we moved to Hospice, Jim said we would just be there a little while until he got his strength back.  I don't know if he really believe that, or it was an act for me, him, both of us….He was so incredibly strong…I know how hard it is watch your husband suffer and you can do nothing.  I pray things get better for you and Bob soon.  I can't believe Jim has be gone since Nov 30th….still seems unreal to me at times.  I am starting in grief counseling this next week…..

                Remember to keep close to God, pray, and never give up that Hope!

                Take Care,

                Sherron, wife to Jim FOREVER

                Carmon in NM
                Participant

                  Hello Deb – I'm the melanoma patient in my marriage (stage 4) and I see the toll it takes on my husband as well. I really believe that in many cases, this disease is much harder on the caregiver than the patient.

                  One of the worst things I've ever had to do was to call my husband where he was working in ND to tell him that I had a new metastasis on my adrendal gland after we thought we were clear with the success we had in treating two brain mets.  I was so glad when he told me that he finally understood what I had been saying for the last two years, that this is our 'new normal' and that we will never be able to go back to what we used to think of as normal.

                  Since that moment of acceptance, our relationship has completely changed and we are closer than we have ever been in our marriage. We both focus on the joy of each moment we have together. It has allowed us to be completely open and honest with each other which has been a huge relief for me because I used to feel like I had to protect him from the reality of this disease.

                  I'm not sure what I'm trying to say except that in my marriage, this journey has brought us closer together than we ever might have been otherwise. If I should be one of those folks who announces ten years from now that I am 'still NED', how great that we will have had ten years of such bliss together! If my time in the flesh turns out to be shorter, then I will know that we haven't missed a single minute of loving each other and that there will be no regrets for either of us.

                  My prayers and best wishes for you both – Carmon

                  Carmon in NM
                  Participant

                    Hello Deb – I'm the melanoma patient in my marriage (stage 4) and I see the toll it takes on my husband as well. I really believe that in many cases, this disease is much harder on the caregiver than the patient.

                    One of the worst things I've ever had to do was to call my husband where he was working in ND to tell him that I had a new metastasis on my adrendal gland after we thought we were clear with the success we had in treating two brain mets.  I was so glad when he told me that he finally understood what I had been saying for the last two years, that this is our 'new normal' and that we will never be able to go back to what we used to think of as normal.

                    Since that moment of acceptance, our relationship has completely changed and we are closer than we have ever been in our marriage. We both focus on the joy of each moment we have together. It has allowed us to be completely open and honest with each other which has been a huge relief for me because I used to feel like I had to protect him from the reality of this disease.

                    I'm not sure what I'm trying to say except that in my marriage, this journey has brought us closer together than we ever might have been otherwise. If I should be one of those folks who announces ten years from now that I am 'still NED', how great that we will have had ten years of such bliss together! If my time in the flesh turns out to be shorter, then I will know that we haven't missed a single minute of loving each other and that there will be no regrets for either of us.

                    My prayers and best wishes for you both – Carmon

                    NicOz
                    Participant

                      Ah, Deb… I am *snorting* my head off at the moment- not at the emotional strain this is taking on you (both), but the "grateful" phrase. I am very much hearing you on that one, hun. I think it is simply a matter of the human mind needing to make 'reason' of a completely bulls#!t diagnosis that turns one's world upside down.

                      There are valuable lessons that I learned earlier than I otherwise would have, but I would have gotten those in the end- the cosmos didn't HAVE to throw me into a very uncomfortable exponential learning curve like it did, IMO.  I'd much prefer to be still taking things for granted, having priorities that were probably a bit 'skew-wiff', and the like, than being forced to confront things that can really take their toll on you on a daily basis.

                      It's forced on us, so in an effort not to go around the twist, we attempt to justify ourselves that at least we're learning something from it. I'm not sure, however, that my 5 year old needs to be learning some of these "lessons", nor my family and friends and that makes me kind of furious to be honest. This disease has no damned business forcing THEM to have to go through what I go through simply because they love me.

                      No one (unless they are a complete sociopath) should HAVE to have to delve into their feelings to this depth. There is a very good reason as to why we avoid it like the plague until it is forced upon us ๐Ÿ™‚

                      I'm glad you had a good cry. It's not a sign of weakness to admit (even to yourself) the depth of your feelings. I think understanding exactly what it is you're feeling (and specifically "why") is something that lets us deal with things in a way that is more constructive and helpful to ourselves and others… but given that I'm not long out of another surgery, my brain may be scrambled ๐Ÿ˜› Sometimes it can help us avoiding going places where we don't need to go at the time.

                      As I'm sure you know, I have everything crossed for you and Bob that things will settle down, and maybe give you both a chance to breathe and rejuvenate and get some of your emotional energy back.

                      No words of wisdom to end on- it just sucks. Be good to yourselves!!

                      NicOz
                      Participant

                        Ah, Deb… I am *snorting* my head off at the moment- not at the emotional strain this is taking on you (both), but the "grateful" phrase. I am very much hearing you on that one, hun. I think it is simply a matter of the human mind needing to make 'reason' of a completely bulls#!t diagnosis that turns one's world upside down.

                        There are valuable lessons that I learned earlier than I otherwise would have, but I would have gotten those in the end- the cosmos didn't HAVE to throw me into a very uncomfortable exponential learning curve like it did, IMO.  I'd much prefer to be still taking things for granted, having priorities that were probably a bit 'skew-wiff', and the like, than being forced to confront things that can really take their toll on you on a daily basis.

                        It's forced on us, so in an effort not to go around the twist, we attempt to justify ourselves that at least we're learning something from it. I'm not sure, however, that my 5 year old needs to be learning some of these "lessons", nor my family and friends and that makes me kind of furious to be honest. This disease has no damned business forcing THEM to have to go through what I go through simply because they love me.

                        No one (unless they are a complete sociopath) should HAVE to have to delve into their feelings to this depth. There is a very good reason as to why we avoid it like the plague until it is forced upon us ๐Ÿ™‚

                        I'm glad you had a good cry. It's not a sign of weakness to admit (even to yourself) the depth of your feelings. I think understanding exactly what it is you're feeling (and specifically "why") is something that lets us deal with things in a way that is more constructive and helpful to ourselves and others… but given that I'm not long out of another surgery, my brain may be scrambled ๐Ÿ˜› Sometimes it can help us avoiding going places where we don't need to go at the time.

                        As I'm sure you know, I have everything crossed for you and Bob that things will settle down, and maybe give you both a chance to breathe and rejuvenate and get some of your emotional energy back.

                        No words of wisdom to end on- it just sucks. Be good to yourselves!!

                        jag
                        Participant

                          Deb, I don't know if I am grateful for having cancer, at the same time, I would say that it has brought me much closer to my wife and family.  That I am grateful for.  Also knowing how much they love me really helps.  It has definitely changed my perspective and has gotten me to realize what is important in life.  I'm sure Bob knows what is going on and doesn't want to upset you.  Sometimes flat out denial does get you through the rough stuff, that and doing fun stuff.  Plan a trip away even if it is only a weekend.  Get everything off of your mind, and spoil yourselves.  Sometimes pacing yourself and realizing that you have to deal with a chronic disease is what you need.  Taking time off can really help.  I have had plenty of brain recurrences over the years.  This year I will be going on my 5th year of dealing with melanoma in the brain.

                          It can be done.  Sometimes it all doesn't happen at once.  

                          p.s. are you talking about actual brain surgery, or gamma knife surgery?

                          jag
                          Participant

                            Deb, I don't know if I am grateful for having cancer, at the same time, I would say that it has brought me much closer to my wife and family.  That I am grateful for.  Also knowing how much they love me really helps.  It has definitely changed my perspective and has gotten me to realize what is important in life.  I'm sure Bob knows what is going on and doesn't want to upset you.  Sometimes flat out denial does get you through the rough stuff, that and doing fun stuff.  Plan a trip away even if it is only a weekend.  Get everything off of your mind, and spoil yourselves.  Sometimes pacing yourself and realizing that you have to deal with a chronic disease is what you need.  Taking time off can really help.  I have had plenty of brain recurrences over the years.  This year I will be going on my 5th year of dealing with melanoma in the brain.

                            It can be done.  Sometimes it all doesn't happen at once.  

                            p.s. are you talking about actual brain surgery, or gamma knife surgery?

                            glewis923
                            Participant

                              Hey Deb-  Am i grateful for having cancer, or worse yet my wife of 22 yrs., my 2 sons, my older bro/ sis.  my both healthy over 80 parents has to see this "through" while i start to feel a burden and possibly leaving this world at a very inconvenient time for others??  Am I grafteful?   NO  NO  NOOOOOOOOOOOOOOOO!!!!

                              However, I am very grateful, blessed, luckey, enlightened, and so on because God HAS given me all of the above! (well, he could've left out the STG. 4 cancer stuff)  I resign myself to the will of God, hoping that through Drs., medicine, and my hard-headedness, that i still have a chance and a fight left.  I also think of so many others, so much younger, killed by 100's everyday in carwrecks, accidents, childhood diseases (like f-in' c-cer) and sometimes wonder why God even spared me 48 yrs.!  I am grateful for the life i've had so far,   ……and hopeful that anything can happen, and God will take care of ALL. , before, now, and in the future-  whatever it holds.

                              With very MUCH Love for ALL of YA! :   Grady, Bonita Lewis and Families.

                              glewis923
                              Participant

                                Hey Deb-  Am i grateful for having cancer, or worse yet my wife of 22 yrs., my 2 sons, my older bro/ sis.  my both healthy over 80 parents has to see this "through" while i start to feel a burden and possibly leaving this world at a very inconvenient time for others??  Am I grafteful?   NO  NO  NOOOOOOOOOOOOOOOO!!!!

                                However, I am very grateful, blessed, luckey, enlightened, and so on because God HAS given me all of the above! (well, he could've left out the STG. 4 cancer stuff)  I resign myself to the will of God, hoping that through Drs., medicine, and my hard-headedness, that i still have a chance and a fight left.  I also think of so many others, so much younger, killed by 100's everyday in carwrecks, accidents, childhood diseases (like f-in' c-cer) and sometimes wonder why God even spared me 48 yrs.!  I am grateful for the life i've had so far,   ……and hopeful that anything can happen, and God will take care of ALL. , before, now, and in the future-  whatever it holds.

                                With very MUCH Love for ALL of YA! :   Grady, Bonita Lewis and Families.

                            Viewing 11 reply threads

                            Tagged: 

                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            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.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byย MRF posting policies.