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brain met

Forums General Melanoma Community brain met

  • Post
    lhaley
    Participant

      I am still shocked but news was bad.  Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal.  The receptionist commented during the phone  that it's just not normal that she hears from these symptoms from a fractured tooth.  The dentist had called in 2 others because she was confused. Life would have been so easier.

      I am still shocked but news was bad.  Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal.  The receptionist commented during the phone  that it's just not normal that she hears from these symptoms from a fractured tooth.  The dentist had called in 2 others because she was confused. Life would have been so easier.  The PET was planned the next morning for my regular scan.  Called the oncologist and at 6:30 that morning the tumor was discovered.  It's fairly large, 2.15cm and is deep in the area of language/written/ and reading.  By that afternoon I was already loosing my words.  Totally in denial I'm thinking it was anxiety and bloodpressure.  

      I had to wait for the appointment and the receptionist kept appologizing that there was an emergency.  Found out later it was because the team had already met. The nuero surgeon was in DC and already sent pictures. The radiologist was already called, I saw him just didn't know at the time who he was. The team worked quickly that helped us to deal emotionally. 

      All appointments have been completed. Talked to many different of the oncologists I've talked to in the past. Even my mel specialist that is now retired from Univ of Penn has contacted me and gave me his thoughts.  I'm ready and on Monday I'll be having SRS.  Plan B will be a crainectomy.  They are only doing this 2nd because it is deep.  The Surgeon isn't daunted by his ability but also knows damage in this area can definitely happen.  He already knows how he will actually enter the area if needed to limit as possible.

      I've been told that a single met has %80 success.  The hope is that nothing else grows. 

      I'm offering the Caring Bridge if you choose to follow my story.  I hate melanoma.

      https://www.caringbridge.org/visit/lindahaley/settings

      Linda

    Viewing 59 reply threads
    • Replies
        FormerCaregiver
        Participant

          Linda, I am stunned and saddened to read this news. However, I think that you are a real inspiration to everyone here and if anyone can overcome this obstacle – you can.

          Hope that treatment will be very successful, and that you will be feeling better soon.

          Take care

          Frank from Australia

          FormerCaregiver
          Participant

            Linda, I am stunned and saddened to read this news. However, I think that you are a real inspiration to everyone here and if anyone can overcome this obstacle – you can.

            Hope that treatment will be very successful, and that you will be feeling better soon.

            Take care

            Frank from Australia

            FormerCaregiver
            Participant

              Linda, I am stunned and saddened to read this news. However, I think that you are a real inspiration to everyone here and if anyone can overcome this obstacle – you can.

              Hope that treatment will be very successful, and that you will be feeling better soon.

              Take care

              Frank from Australia

              James from Sydney
              Participant

                Dear Linda, i know you will knock this out,  you just will, i am a bit lost for words at the moment but want you to know that we are sending you lots of positive energy from Oz. It sounds like you have an incredible team around you. Maybe ask your Onc. to see if you can enter a combined  Ippi/Pd1 Trial post Radio.

                best wishes

                James

                James from Sydney
                Participant

                  Dear Linda, i know you will knock this out,  you just will, i am a bit lost for words at the moment but want you to know that we are sending you lots of positive energy from Oz. It sounds like you have an incredible team around you. Maybe ask your Onc. to see if you can enter a combined  Ippi/Pd1 Trial post Radio.

                  best wishes

                  James

                  James from Sydney
                  Participant

                    Dear Linda, i know you will knock this out,  you just will, i am a bit lost for words at the moment but want you to know that we are sending you lots of positive energy from Oz. It sounds like you have an incredible team around you. Maybe ask your Onc. to see if you can enter a combined  Ippi/Pd1 Trial post Radio.

                    best wishes

                    James

                    akls
                    Participant

                      Linda,

                      I'm so sorry to hear this.  You are a very strong person and I have no doubt you will come through this with flying colors just the way you have come through all the others.  My thoughts and prayers are with you.

                       

                      Amy S. in Michigan

                      akls
                      Participant

                        Linda,

                        I'm so sorry to hear this.  You are a very strong person and I have no doubt you will come through this with flying colors just the way you have come through all the others.  My thoughts and prayers are with you.

                         

                        Amy S. in Michigan

                        akls
                        Participant

                          Linda,

                          I'm so sorry to hear this.  You are a very strong person and I have no doubt you will come through this with flying colors just the way you have come through all the others.  My thoughts and prayers are with you.

                           

                          Amy S. in Michigan

                          triciad
                          Participant

                            Linda,

                            I am devasted that  you are going through this…you have been through so much already.  You have always been here for all of us with your uplifting and informative responses, and we will be here for you!  I really hate this disease!  Having said that, you are a true warrior and have what it takes to battle this beast.  Please know that you are in my thoughts and prayers.  I am looking forward to hearing about your latest victory…God speed! 

                            Tricia

                            triciad
                            Participant

                              Linda,

                              I am devasted that  you are going through this…you have been through so much already.  You have always been here for all of us with your uplifting and informative responses, and we will be here for you!  I really hate this disease!  Having said that, you are a true warrior and have what it takes to battle this beast.  Please know that you are in my thoughts and prayers.  I am looking forward to hearing about your latest victory…God speed! 

                              Tricia

                              triciad
                              Participant

                                Linda,

                                I am devasted that  you are going through this…you have been through so much already.  You have always been here for all of us with your uplifting and informative responses, and we will be here for you!  I really hate this disease!  Having said that, you are a true warrior and have what it takes to battle this beast.  Please know that you are in my thoughts and prayers.  I am looking forward to hearing about your latest victory…God speed! 

                                Tricia

                                Rebecca and Bob
                                Participant

                                  Linda,

                                   

                                  I'm sorry to hear this news for you, but as others have said you are strong and you need to get through it. I'm praying SRS gets rid of it for you and quick!

                                  I hate melanoma too.

                                  Rebecca

                                  Rebecca and Bob
                                  Participant

                                    Linda,

                                     

                                    I'm sorry to hear this news for you, but as others have said you are strong and you need to get through it. I'm praying SRS gets rid of it for you and quick!

                                    I hate melanoma too.

                                    Rebecca

                                    Rebecca and Bob
                                    Participant

                                      Linda,

                                       

                                      I'm sorry to hear this news for you, but as others have said you are strong and you need to get through it. I'm praying SRS gets rid of it for you and quick!

                                      I hate melanoma too.

                                      Rebecca

                                      TracyLee
                                      Participant

                                        Linda,

                                        Ah, my fellow Delawarean…this just stinks. All of it.

                                        Prayers for you, my friend.

                                        TracyLee

                                        TracyLee
                                        Participant

                                          Linda,

                                          Ah, my fellow Delawarean…this just stinks. All of it.

                                          Prayers for you, my friend.

                                          TracyLee

                                          TracyLee
                                          Participant

                                            Linda,

                                            Ah, my fellow Delawarean…this just stinks. All of it.

                                            Prayers for you, my friend.

                                            TracyLee

                                            Gene_S
                                            Participant

                                              Hello Linda,

                                              Prayers are being sent and with your strong will you can make it through this stumbling block also.  Thank you for sharing the caring bridge and keep up the fight.  I hope and pray that the SRS works well and you will be back to tell us all the good news soon.

                                              Judy (loving wife and caregiver of Gene)

                                              Gene_S
                                              Participant

                                                Hello Linda,

                                                Prayers are being sent and with your strong will you can make it through this stumbling block also.  Thank you for sharing the caring bridge and keep up the fight.  I hope and pray that the SRS works well and you will be back to tell us all the good news soon.

                                                Judy (loving wife and caregiver of Gene)

                                                Gene_S
                                                Participant

                                                  Hello Linda,

                                                  Prayers are being sent and with your strong will you can make it through this stumbling block also.  Thank you for sharing the caring bridge and keep up the fight.  I hope and pray that the SRS works well and you will be back to tell us all the good news soon.

                                                  Judy (loving wife and caregiver of Gene)

                                                  LV
                                                  Participant

                                                    Oh Linda, this just sucks, there's no other way to say it.

                                                    It does sound like you have a fantastic team on your side, and I -we ALL- are pulling for you!

                                                    Laura

                                                    LV
                                                    Participant

                                                      Oh Linda, this just sucks, there's no other way to say it.

                                                      It does sound like you have a fantastic team on your side, and I -we ALL- are pulling for you!

                                                      Laura

                                                      LV
                                                      Participant

                                                        Oh Linda, this just sucks, there's no other way to say it.

                                                        It does sound like you have a fantastic team on your side, and I -we ALL- are pulling for you!

                                                        Laura

                                                        lovingwifedeb
                                                        Participant
                                                          Linda,
                                                          There is a silver cord that keeps me attached to this group, I come back to read updates but this was not one I expected. You are one of the first supporters for me in this group and that is what it’s all about here. I know melanoma sucks big time…

                                                          If I have learned anything my only advise is to not lose sight of family and loving everyday. The fight/war takes over all our time because surviving is what it’s all about but really it’s about love.

                                                          Write… Write… Write… Keep a journal telling all.

                                                          Peace to you Linda.
                                                          Deb
                                                          lovingwife to Bob, May 27th
                                                          redesign08.blogspot.com

                                                          lovingwifedeb
                                                          Participant
                                                            Linda,
                                                            There is a silver cord that keeps me attached to this group, I come back to read updates but this was not one I expected. You are one of the first supporters for me in this group and that is what it’s all about here. I know melanoma sucks big time…

                                                            If I have learned anything my only advise is to not lose sight of family and loving everyday. The fight/war takes over all our time because surviving is what it’s all about but really it’s about love.

                                                            Write… Write… Write… Keep a journal telling all.

                                                            Peace to you Linda.
                                                            Deb
                                                            lovingwife to Bob, May 27th
                                                            redesign08.blogspot.com

                                                            lovingwifedeb
                                                            Participant
                                                              Linda,
                                                              There is a silver cord that keeps me attached to this group, I come back to read updates but this was not one I expected. You are one of the first supporters for me in this group and that is what it’s all about here. I know melanoma sucks big time…

                                                              If I have learned anything my only advise is to not lose sight of family and loving everyday. The fight/war takes over all our time because surviving is what it’s all about but really it’s about love.

                                                              Write… Write… Write… Keep a journal telling all.

                                                              Peace to you Linda.
                                                              Deb
                                                              lovingwife to Bob, May 27th
                                                              redesign08.blogspot.com

                                                              dian in spokane
                                                              Participant

                                                                Linda,

                                                                 

                                                                thanks for writing, you've been on my mind, of course, for the last few days, I"m glad to hear things are moving along so swiftly. I know you've had good luck in the past knocking out single mets, so I hope that you are just as successful this time.

                                                                 

                                                                dian

                                                                dian in spokane
                                                                Participant

                                                                  Linda,

                                                                   

                                                                  thanks for writing, you've been on my mind, of course, for the last few days, I"m glad to hear things are moving along so swiftly. I know you've had good luck in the past knocking out single mets, so I hope that you are just as successful this time.

                                                                   

                                                                  dian

                                                                    Karin L
                                                                    Participant

                                                                      Damn this melanoma!  You can fight this and we will be with you all the way as you do.  My prayers are with you.  Big hugs!

                                                                      Karin

                                                                      Karin L
                                                                      Participant

                                                                        Damn this melanoma!  You can fight this and we will be with you all the way as you do.  My prayers are with you.  Big hugs!

                                                                        Karin

                                                                        Karin L
                                                                        Participant

                                                                          Damn this melanoma!  You can fight this and we will be with you all the way as you do.  My prayers are with you.  Big hugs!

                                                                          Karin

                                                                        dian in spokane
                                                                        Participant

                                                                          Linda,

                                                                           

                                                                          thanks for writing, you've been on my mind, of course, for the last few days, I"m glad to hear things are moving along so swiftly. I know you've had good luck in the past knocking out single mets, so I hope that you are just as successful this time.

                                                                           

                                                                          dian

                                                                          MaryD
                                                                          Participant

                                                                            I'm so sorry to hear this Linda –  I can only imagine what a shock this was for you.   But . .it sounds like you are surrounded by a great health care team and they have all the plans in place to get the met gone!    Please know you are in my prayers and sending good  thoughts that the SRS treatment is a complete success!

                                                                            While this is a setback, I have no doubt you will come out fighting as you always have ..

                                                                            Mary

                                                                            MaryD
                                                                            Participant

                                                                              I'm so sorry to hear this Linda –  I can only imagine what a shock this was for you.   But . .it sounds like you are surrounded by a great health care team and they have all the plans in place to get the met gone!    Please know you are in my prayers and sending good  thoughts that the SRS treatment is a complete success!

                                                                              While this is a setback, I have no doubt you will come out fighting as you always have ..

                                                                              Mary

                                                                              MaryD
                                                                              Participant

                                                                                I'm so sorry to hear this Linda –  I can only imagine what a shock this was for you.   But . .it sounds like you are surrounded by a great health care team and they have all the plans in place to get the met gone!    Please know you are in my prayers and sending good  thoughts that the SRS treatment is a complete success!

                                                                                While this is a setback, I have no doubt you will come out fighting as you always have ..

                                                                                Mary

                                                                                mombase
                                                                                Participant

                                                                                  I am so sorry to hear that you have to deal with a new met. I am so glad that you discovered it before it grew any larger. I am so glad to hear that your doc is so confident in his abilities to zap that bugger out of there. And 80% are fantastic odds for non-recurrence! I am so hopeful for you and your speedy recovery. Thanks for setting up the Caring Bridge page.

                                                                                  Cristy, Stage IV

                                                                                  mombase
                                                                                  Participant

                                                                                    I am so sorry to hear that you have to deal with a new met. I am so glad that you discovered it before it grew any larger. I am so glad to hear that your doc is so confident in his abilities to zap that bugger out of there. And 80% are fantastic odds for non-recurrence! I am so hopeful for you and your speedy recovery. Thanks for setting up the Caring Bridge page.

                                                                                    Cristy, Stage IV

                                                                                    mombase
                                                                                    Participant

                                                                                      I am so sorry to hear that you have to deal with a new met. I am so glad that you discovered it before it grew any larger. I am so glad to hear that your doc is so confident in his abilities to zap that bugger out of there. And 80% are fantastic odds for non-recurrence! I am so hopeful for you and your speedy recovery. Thanks for setting up the Caring Bridge page.

                                                                                      Cristy, Stage IV

                                                                                      King
                                                                                      Participant

                                                                                        Linda,

                                                                                        I am so very sorry to read this post.  It's great that you have a plan in place so quickly but it sure would have been better if a root canal could have fixed it all.

                                                                                        Please know that you and your family are in my thoughts and prayers.  Things can change so quickly with this disease.

                                                                                        I will follow your Caring Bridge site as well.  We are here to support you and help you in any possible way.

                                                                                        Another very sad day in the melanoma world.

                                                                                         

                                                                                        Stay Strong

                                                                                        King

                                                                                        Stage IV 7/05 Liver mets

                                                                                        King
                                                                                        Participant

                                                                                          Linda,

                                                                                          I am so very sorry to read this post.  It's great that you have a plan in place so quickly but it sure would have been better if a root canal could have fixed it all.

                                                                                          Please know that you and your family are in my thoughts and prayers.  Things can change so quickly with this disease.

                                                                                          I will follow your Caring Bridge site as well.  We are here to support you and help you in any possible way.

                                                                                          Another very sad day in the melanoma world.

                                                                                           

                                                                                          Stay Strong

                                                                                          King

                                                                                          Stage IV 7/05 Liver mets

                                                                                          King
                                                                                          Participant

                                                                                            Linda,

                                                                                            I am so very sorry to read this post.  It's great that you have a plan in place so quickly but it sure would have been better if a root canal could have fixed it all.

                                                                                            Please know that you and your family are in my thoughts and prayers.  Things can change so quickly with this disease.

                                                                                            I will follow your Caring Bridge site as well.  We are here to support you and help you in any possible way.

                                                                                            Another very sad day in the melanoma world.

                                                                                             

                                                                                            Stay Strong

                                                                                            King

                                                                                            Stage IV 7/05 Liver mets

                                                                                            CarolA
                                                                                            Participant

                                                                                              Dear Linda – I haven't been in contact much via writing, or commenting.  I've been the great lurker here lately.   (We had the breast melanoma issue in common, mine 3 years ago.)   What I have seen by lurking, is that you are the first line of support for many here on the board.    Well, let us rally and now support you, in prayer or whatever it takes from this gallery of friends you have acquired.   How many times have we all stated that we HATE this #[email protected]!! disease.   Saying it again, with great anger.   You are an inspiration and will continue to be an inspiration, Linda.

                                                                                              With the sincerest of good wishes and prayers for you and what sounds like an incredibly supportive medical staff, I say goodnight and God bless.

                                                                                              CarolA – Stage III and holding on

                                                                                              Amherst, NY  

                                                                                              CarolA
                                                                                              Participant

                                                                                                Dear Linda – I haven't been in contact much via writing, or commenting.  I've been the great lurker here lately.   (We had the breast melanoma issue in common, mine 3 years ago.)   What I have seen by lurking, is that you are the first line of support for many here on the board.    Well, let us rally and now support you, in prayer or whatever it takes from this gallery of friends you have acquired.   How many times have we all stated that we HATE this #[email protected]!! disease.   Saying it again, with great anger.   You are an inspiration and will continue to be an inspiration, Linda.

                                                                                                With the sincerest of good wishes and prayers for you and what sounds like an incredibly supportive medical staff, I say goodnight and God bless.

                                                                                                CarolA – Stage III and holding on

                                                                                                Amherst, NY  

                                                                                                CarolA
                                                                                                Participant

                                                                                                  Dear Linda – I haven't been in contact much via writing, or commenting.  I've been the great lurker here lately.   (We had the breast melanoma issue in common, mine 3 years ago.)   What I have seen by lurking, is that you are the first line of support for many here on the board.    Well, let us rally and now support you, in prayer or whatever it takes from this gallery of friends you have acquired.   How many times have we all stated that we HATE this #[email protected]!! disease.   Saying it again, with great anger.   You are an inspiration and will continue to be an inspiration, Linda.

                                                                                                  With the sincerest of good wishes and prayers for you and what sounds like an incredibly supportive medical staff, I say goodnight and God bless.

                                                                                                  CarolA – Stage III and holding on

                                                                                                  Amherst, NY  

                                                                                                  jax2007gxp
                                                                                                  Participant

                                                                                                    Linda,

                                                                                                    I am deeply saddened by this news, but I know you have enough heart and soul to come through this!  You have been here for all of us, and I can only speak for myself, but I'll be out here reading, praying, and sending the most positive thoughts and words your way.

                                                                                                    God bless and Godspeed!

                                                                                                    Jacki

                                                                                                    jax2007gxp
                                                                                                    Participant

                                                                                                      Linda,

                                                                                                      I am deeply saddened by this news, but I know you have enough heart and soul to come through this!  You have been here for all of us, and I can only speak for myself, but I'll be out here reading, praying, and sending the most positive thoughts and words your way.

                                                                                                      God bless and Godspeed!

                                                                                                      Jacki

                                                                                                        Vermont_Donna
                                                                                                        Participant

                                                                                                          Dear Linda,

                                                                                                          I was so shocked to read your post!!! I am so sorry that this had to be a horrible melanoma brain tumor. I am glad that you have a great plan so quickly and will be dealing with the tumor right away. I'll be thinking of you!

                                                                                                          HUGS!!

                                                                                                          Vermont_Donna, stage 3a

                                                                                                          Vermont_Donna
                                                                                                          Participant

                                                                                                            Dear Linda,

                                                                                                            I was so shocked to read your post!!! I am so sorry that this had to be a horrible melanoma brain tumor. I am glad that you have a great plan so quickly and will be dealing with the tumor right away. I'll be thinking of you!

                                                                                                            HUGS!!

                                                                                                            Vermont_Donna, stage 3a

                                                                                                            Lisa13
                                                                                                            Participant

                                                                                                              Linda,

                                                                                                              I too was very saddened and shocked to read about your new occurence, but happy to hear there's a plan in place and ready to go.  You've giving us all such tremendous support in times of need, so we're all routing for a successful surgery and healing.   

                                                                                                              I'm sending good thoughts and the best of wishes your way.

                                                                                                              Lisa – Stage 4

                                                                                                              Lisa13
                                                                                                              Participant

                                                                                                                Linda,

                                                                                                                I too was very saddened and shocked to read about your new occurence, but happy to hear there's a plan in place and ready to go.  You've giving us all such tremendous support in times of need, so we're all routing for a successful surgery and healing.   

                                                                                                                I'm sending good thoughts and the best of wishes your way.

                                                                                                                Lisa – Stage 4

                                                                                                                Lisa13
                                                                                                                Participant

                                                                                                                  Linda,

                                                                                                                  I too was very saddened and shocked to read about your new occurence, but happy to hear there's a plan in place and ready to go.  You've giving us all such tremendous support in times of need, so we're all routing for a successful surgery and healing.   

                                                                                                                  I'm sending good thoughts and the best of wishes your way.

                                                                                                                  Lisa – Stage 4

                                                                                                                  Vermont_Donna
                                                                                                                  Participant

                                                                                                                    Dear Linda,

                                                                                                                    I was so shocked to read your post!!! I am so sorry that this had to be a horrible melanoma brain tumor. I am glad that you have a great plan so quickly and will be dealing with the tumor right away. I'll be thinking of you!

                                                                                                                    HUGS!!

                                                                                                                    Vermont_Donna, stage 3a

                                                                                                                  jax2007gxp
                                                                                                                  Participant

                                                                                                                    Linda,

                                                                                                                    I am deeply saddened by this news, but I know you have enough heart and soul to come through this!  You have been here for all of us, and I can only speak for myself, but I'll be out here reading, praying, and sending the most positive thoughts and words your way.

                                                                                                                    God bless and Godspeed!

                                                                                                                    Jacki

                                                                                                                    lhaley
                                                                                                                    Participant

                                                                                                                      I'd like to thank all of your comments and support.  It's amazing how at times the board has been more support then intermediate family.  Closest friends and immediate family is great, brothers and sisters are scared and I guess to upset to talk.  When I recover I will have some words with family, especially the help my husband and son need.

                                                                                                                      The procedure is early Monday morning.  My hubby is not technology (ha ha) and we are spending time getting things that should have been done years ago. Our son is the backup with paperwork but he lives 3.5 hours away. He doesn't even know how to use a cellphone!  We've been married 37 years and he's my block. My sil is co-authoring my Caring Bridge if need be.

                                                                                                                      Am feeling this will work, just have my moments where the fear moves on.  Like life changed in 79 and then a new change in 06 I continued.  I do want the feeling that I feel good again. I know that the steroids are part of the fuzzy look.

                                                                                                                      I know that as a long term survivor it has always worried me for the board when I progressed and how it also scares other members.  We are each unique and our destination can be different.  I hope next year I'll be doing well with just regular MRI's added to my plan.  Last night we found out that my husbands best friend also now has stage IV follicular lymphoma.  Chaz and I have set a date next year to celebrate.

                                                                                                                      Love ya,

                                                                                                                      Linda

                                                                                                                      lhaley
                                                                                                                      Participant

                                                                                                                        I'd like to thank all of your comments and support.  It's amazing how at times the board has been more support then intermediate family.  Closest friends and immediate family is great, brothers and sisters are scared and I guess to upset to talk.  When I recover I will have some words with family, especially the help my husband and son need.

                                                                                                                        The procedure is early Monday morning.  My hubby is not technology (ha ha) and we are spending time getting things that should have been done years ago. Our son is the backup with paperwork but he lives 3.5 hours away. He doesn't even know how to use a cellphone!  We've been married 37 years and he's my block. My sil is co-authoring my Caring Bridge if need be.

                                                                                                                        Am feeling this will work, just have my moments where the fear moves on.  Like life changed in 79 and then a new change in 06 I continued.  I do want the feeling that I feel good again. I know that the steroids are part of the fuzzy look.

                                                                                                                        I know that as a long term survivor it has always worried me for the board when I progressed and how it also scares other members.  We are each unique and our destination can be different.  I hope next year I'll be doing well with just regular MRI's added to my plan.  Last night we found out that my husbands best friend also now has stage IV follicular lymphoma.  Chaz and I have set a date next year to celebrate.

                                                                                                                        Love ya,

                                                                                                                        Linda

                                                                                                                        lhaley
                                                                                                                        Participant

                                                                                                                          I'd like to thank all of your comments and support.  It's amazing how at times the board has been more support then intermediate family.  Closest friends and immediate family is great, brothers and sisters are scared and I guess to upset to talk.  When I recover I will have some words with family, especially the help my husband and son need.

                                                                                                                          The procedure is early Monday morning.  My hubby is not technology (ha ha) and we are spending time getting things that should have been done years ago. Our son is the backup with paperwork but he lives 3.5 hours away. He doesn't even know how to use a cellphone!  We've been married 37 years and he's my block. My sil is co-authoring my Caring Bridge if need be.

                                                                                                                          Am feeling this will work, just have my moments where the fear moves on.  Like life changed in 79 and then a new change in 06 I continued.  I do want the feeling that I feel good again. I know that the steroids are part of the fuzzy look.

                                                                                                                          I know that as a long term survivor it has always worried me for the board when I progressed and how it also scares other members.  We are each unique and our destination can be different.  I hope next year I'll be doing well with just regular MRI's added to my plan.  Last night we found out that my husbands best friend also now has stage IV follicular lymphoma.  Chaz and I have set a date next year to celebrate.

                                                                                                                          Love ya,

                                                                                                                          Linda

                                                                                                                          Bonnie Lea
                                                                                                                          Participant

                                                                                                                            Oh my Poor Linda  she who always gives me support and lovely words and thoughts.

                                                                                                                            well, now it is turn about I shall continue to pray for you and all of us here as I usually do.  You will beat this thing, I trust in that you will.

                                                                                                                            I want to join the carring brdige thing but it requires passwords and I just at this moment cannot remember I do write them down, but man that list is too long.  )prob half dont even work)

                                                                                                                             

                                                                                                                            Please keep us all informed.

                                                                                                                            With Love

                                                                                                                            Bonnie

                                                                                                                            Bonnie Lea
                                                                                                                            Participant

                                                                                                                              Oh my Poor Linda  she who always gives me support and lovely words and thoughts.

                                                                                                                              well, now it is turn about I shall continue to pray for you and all of us here as I usually do.  You will beat this thing, I trust in that you will.

                                                                                                                              I want to join the carring brdige thing but it requires passwords and I just at this moment cannot remember I do write them down, but man that list is too long.  )prob half dont even work)

                                                                                                                               

                                                                                                                              Please keep us all informed.

                                                                                                                              With Love

                                                                                                                              Bonnie

                                                                                                                              Bonnie Lea
                                                                                                                              Participant

                                                                                                                                Oh my Poor Linda  she who always gives me support and lovely words and thoughts.

                                                                                                                                well, now it is turn about I shall continue to pray for you and all of us here as I usually do.  You will beat this thing, I trust in that you will.

                                                                                                                                I want to join the carring brdige thing but it requires passwords and I just at this moment cannot remember I do write them down, but man that list is too long.  )prob half dont even work)

                                                                                                                                 

                                                                                                                                Please keep us all informed.

                                                                                                                                With Love

                                                                                                                                Bonnie

                                                                                                                                Leigh
                                                                                                                                Participant

                                                                                                                                  Hello Linda,

                                                                                                                                  I am so sorry to read this news.  I have never met you but you have answered many of my posts, as well as many others, at times when I have really needed somebody who understood and had a cool head.  I am praying for you across the ocean as I know many others are.  It is wonderful you have such a great medical team around you and I hope that your family are able to understand and find their own way to support you.  Thank you again from one of the many people on this board who have benefited from your kind words and knowledge.

                                                                                                                                  Leigh
                                                                                                                                  Participant

                                                                                                                                    Hello Linda,

                                                                                                                                    I am so sorry to read this news.  I have never met you but you have answered many of my posts, as well as many others, at times when I have really needed somebody who understood and had a cool head.  I am praying for you across the ocean as I know many others are.  It is wonderful you have such a great medical team around you and I hope that your family are able to understand and find their own way to support you.  Thank you again from one of the many people on this board who have benefited from your kind words and knowledge.

                                                                                                                                    Leigh
                                                                                                                                    Participant

                                                                                                                                      Hello Linda,

                                                                                                                                      I am so sorry to read this news.  I have never met you but you have answered many of my posts, as well as many others, at times when I have really needed somebody who understood and had a cool head.  I am praying for you across the ocean as I know many others are.  It is wonderful you have such a great medical team around you and I hope that your family are able to understand and find their own way to support you.  Thank you again from one of the many people on this board who have benefited from your kind words and knowledge.

                                                                                                                                      shellebrownies
                                                                                                                                      Participant

                                                                                                                                        Sorry it took so long to get to responding to this, Linda. We got some bad news ourselves this week and I wasn't ready to respond until now. I'm glad to hear that your docs think they can nip this thing in the bud. I am hoping for a long, long NED for you!

                                                                                                                                        Michelle, wife of Don

                                                                                                                                        shellebrownies
                                                                                                                                        Participant

                                                                                                                                          Sorry it took so long to get to responding to this, Linda. We got some bad news ourselves this week and I wasn't ready to respond until now. I'm glad to hear that your docs think they can nip this thing in the bud. I am hoping for a long, long NED for you!

                                                                                                                                          Michelle, wife of Don

                                                                                                                                          shellebrownies
                                                                                                                                          Participant

                                                                                                                                            Sorry it took so long to get to responding to this, Linda. We got some bad news ourselves this week and I wasn't ready to respond until now. I'm glad to hear that your docs think they can nip this thing in the bud. I am hoping for a long, long NED for you!

                                                                                                                                            Michelle, wife of Don

                                                                                                                                            Dynasysman
                                                                                                                                            Participant
                                                                                                                                              Linda —

                                                                                                                                              Here’s hoping that one of the warmest, toughest, mostbgenuine people any of us know will come through tomorrow sailing smoothly.

                                                                                                                                              We all hate melanoma But if Karma matters, you’re traveling on the Wings of Caring.

                                                                                                                                              My prayers and best wishes are with you.

                                                                                                                                              Roger

                                                                                                                                              Dynasysman
                                                                                                                                              Participant
                                                                                                                                                Linda —

                                                                                                                                                Here’s hoping that one of the warmest, toughest, mostbgenuine people any of us know will come through tomorrow sailing smoothly.

                                                                                                                                                We all hate melanoma But if Karma matters, you’re traveling on the Wings of Caring.

                                                                                                                                                My prayers and best wishes are with you.

                                                                                                                                                Roger

                                                                                                                                                Dynasysman
                                                                                                                                                Participant
                                                                                                                                                  Linda —

                                                                                                                                                  Here’s hoping that one of the warmest, toughest, mostbgenuine people any of us know will come through tomorrow sailing smoothly.

                                                                                                                                                  We all hate melanoma But if Karma matters, you’re traveling on the Wings of Caring.

                                                                                                                                                  My prayers and best wishes are with you.

                                                                                                                                                  Roger

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