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Brain Tumor Complications bring an end to our “cancer-fighting” stage

Forums General Melanoma Community Brain Tumor Complications bring an end to our “cancer-fighting” stage

  • Post
    shellebrownies
    Participant

      I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

      I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

      When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

      Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

      And before people tell me we shouldn't take that for an answer and to get second opinions… I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

      I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

      This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

      Thanks; you all are awesome!

      Michelle, wife of Don

    Viewing 71 reply threads
    • Replies
        justlittleoleme
        Participant
          Praying for your miracle!
          justlittleoleme
          Participant
            Praying for your miracle!
            justlittleoleme
            Participant
              Praying for your miracle!
              mombase
              Participant

                I am so sorry, Michelle. Miracles can and do happen, so sending prayers your way!

                Cristy, Stage IV

                mombase
                Participant

                  I am so sorry, Michelle. Miracles can and do happen, so sending prayers your way!

                  Cristy, Stage IV

                  mombase
                  Participant

                    I am so sorry, Michelle. Miracles can and do happen, so sending prayers your way!

                    Cristy, Stage IV

                    deeczar
                    Participant

                      You dont know me but I'm praying for you and your family.

                      Dee

                      deeczar
                      Participant

                        You dont know me but I'm praying for you and your family.

                        Dee

                        deeczar
                        Participant

                          You dont know me but I'm praying for you and your family.

                          Dee

                          Phil S
                          Participant
                            Michelle, I am so very sorry that you and Don have reached this point, I truly will hope and pray that he can return home and be comfortable and free from pain. You have been an amazing advocate and caregiver for Don, and I can only imagine how tough this week has been on both of you. Please know others care and hold you tight in our hearts, take good care of yourself and we wish for Don a peaceful journey. God bless, and call or email me anytime, we all are really like family in this fight! Valerie (Phil’s wife)
                            Phil S
                            Participant
                              Michelle, I am so very sorry that you and Don have reached this point, I truly will hope and pray that he can return home and be comfortable and free from pain. You have been an amazing advocate and caregiver for Don, and I can only imagine how tough this week has been on both of you. Please know others care and hold you tight in our hearts, take good care of yourself and we wish for Don a peaceful journey. God bless, and call or email me anytime, we all are really like family in this fight! Valerie (Phil’s wife)
                              Phil S
                              Participant
                                Michelle, I am so very sorry that you and Don have reached this point, I truly will hope and pray that he can return home and be comfortable and free from pain. You have been an amazing advocate and caregiver for Don, and I can only imagine how tough this week has been on both of you. Please know others care and hold you tight in our hearts, take good care of yourself and we wish for Don a peaceful journey. God bless, and call or email me anytime, we all are really like family in this fight! Valerie (Phil’s wife)
                                JuleFL
                                Participant
                                  I’m sorry to hear this, Michelle. I’ll be praying for Don and you. I understand your feelings.

                                  Jule (Cal’s wife)

                                    Terra
                                    Participant

                                      Thinking and praying for both of you.

                                      Terra
                                      Participant

                                        Thinking and praying for both of you.

                                        Terra
                                        Participant

                                          Thinking and praying for both of you.

                                        JuleFL
                                        Participant
                                          I’m sorry to hear this, Michelle. I’ll be praying for Don and you. I understand your feelings.

                                          Jule (Cal’s wife)

                                          JuleFL
                                          Participant
                                            I’m sorry to hear this, Michelle. I’ll be praying for Don and you. I understand your feelings.

                                            Jule (Cal’s wife)

                                            lhaley
                                            Participant

                                              Michelle,

                                              My heart is broken for all of your family.  I'm sending your thoughts and prayers. 

                                              Linda

                                              lhaley
                                              Participant

                                                Michelle,

                                                My heart is broken for all of your family.  I'm sending your thoughts and prayers. 

                                                Linda

                                                lhaley
                                                Participant

                                                  Michelle,

                                                  My heart is broken for all of your family.  I'm sending your thoughts and prayers. 

                                                  Linda

                                                  triciad
                                                  Participant

                                                    Michelle,

                                                    I am so sorry to hear about this.  It is truly a sad day, but like others have said…miracles do happen!  I will be praying for one for you and Don.

                                                    Tricia

                                                    triciad
                                                    Participant

                                                      Michelle,

                                                      I am so sorry to hear about this.  It is truly a sad day, but like others have said…miracles do happen!  I will be praying for one for you and Don.

                                                      Tricia

                                                      triciad
                                                      Participant

                                                        Michelle,

                                                        I am so sorry to hear about this.  It is truly a sad day, but like others have said…miracles do happen!  I will be praying for one for you and Don.

                                                        Tricia

                                                        Karin L
                                                        Participant

                                                          My prayers are with you Michelle and Don. 

                                                          Karin

                                                          Karin L
                                                          Participant

                                                            My prayers are with you Michelle and Don. 

                                                            Karin

                                                            Karin L
                                                            Participant

                                                              My prayers are with you Michelle and Don. 

                                                              Karin

                                                              momof2kids
                                                              Participant

                                                                Michelle, my thoughts are with you and Don.

                                                                momof2kids
                                                                Participant

                                                                  Michelle, my thoughts are with you and Don.

                                                                  momof2kids
                                                                  Participant

                                                                    Michelle, my thoughts are with you and Don.

                                                                    Jewel
                                                                    Participant

                                                                      Sending a warm prayer to you both

                                                                       

                                                                      Jewel

                                                                      Jewel
                                                                      Participant

                                                                        Sending a warm prayer to you both

                                                                         

                                                                        Jewel

                                                                        Jewel
                                                                        Participant

                                                                          Sending a warm prayer to you both

                                                                           

                                                                          Jewel

                                                                          nickmac56
                                                                          Participant

                                                                            Michelle, so sorry you have reached this point. I wish you a lot of strength and peace during this difficult time. No matter how it resolves I am sure Don would want you to take care of yourself  – so try. My thoughts are with you.

                                                                            Nick

                                                                            nickmac56
                                                                            Participant

                                                                              Michelle, so sorry you have reached this point. I wish you a lot of strength and peace during this difficult time. No matter how it resolves I am sure Don would want you to take care of yourself  – so try. My thoughts are with you.

                                                                              Nick

                                                                              nickmac56
                                                                              Participant

                                                                                Michelle, so sorry you have reached this point. I wish you a lot of strength and peace during this difficult time. No matter how it resolves I am sure Don would want you to take care of yourself  – so try. My thoughts are with you.

                                                                                Nick

                                                                                FormerCaregiver
                                                                                Participant

                                                                                  Michelle, I am saddened to read this. Unfortunately, it looks like the tumour burden has reached the point at which melanoma is starting to overcome any efforts to control it.

                                                                                  I agree with Dr Lawrence regarding his assessment of the situation, and a second opinion would probably confirm his view.

                                                                                  You and Don are in my prayers.

                                                                                  May God bless you both.

                                                                                  Frank from Australia

                                                                                  FormerCaregiver
                                                                                  Participant

                                                                                    Michelle, I am saddened to read this. Unfortunately, it looks like the tumour burden has reached the point at which melanoma is starting to overcome any efforts to control it.

                                                                                    I agree with Dr Lawrence regarding his assessment of the situation, and a second opinion would probably confirm his view.

                                                                                    You and Don are in my prayers.

                                                                                    May God bless you both.

                                                                                    Frank from Australia

                                                                                    FormerCaregiver
                                                                                    Participant

                                                                                      Michelle, I am saddened to read this. Unfortunately, it looks like the tumour burden has reached the point at which melanoma is starting to overcome any efforts to control it.

                                                                                      I agree with Dr Lawrence regarding his assessment of the situation, and a second opinion would probably confirm his view.

                                                                                      You and Don are in my prayers.

                                                                                      May God bless you both.

                                                                                      Frank from Australia

                                                                                      jag
                                                                                      Participant

                                                                                        I am very sorry to hear this Michelle.  

                                                                                        I will say a prayer for Don.

                                                                                          deardad
                                                                                          Participant

                                                                                            Dear Michelle,

                                                                                            I'm very sad to hear this news. My thoughts are with you and Don on this journey.

                                                                                            Nahmi from Melbourne

                                                                                            deardad
                                                                                            Participant

                                                                                              Dear Michelle,

                                                                                              I'm very sad to hear this news. My thoughts are with you and Don on this journey.

                                                                                              Nahmi from Melbourne

                                                                                              deardad
                                                                                              Participant

                                                                                                Dear Michelle,

                                                                                                I'm very sad to hear this news. My thoughts are with you and Don on this journey.

                                                                                                Nahmi from Melbourne

                                                                                              jag
                                                                                              Participant

                                                                                                I am very sorry to hear this Michelle.  

                                                                                                I will say a prayer for Don.

                                                                                                jag
                                                                                                Participant

                                                                                                  I am very sorry to hear this Michelle.  

                                                                                                  I will say a prayer for Don.

                                                                                                  hope4cure1
                                                                                                  Participant

                                                                                                    Michelle, if there was a way to make any of this easier for you and Don, I know a lot of people on this board would do just that.  Your courage and love for each other is strength that you share with us all.  Tonight, Michelle, there are many prayers coming your way from a lot of people.  I can't find the right words, but please know that the feelings are here for you guys, and I pray for your peace.

                                                                                                    hope4cure1
                                                                                                    Participant

                                                                                                      Michelle, if there was a way to make any of this easier for you and Don, I know a lot of people on this board would do just that.  Your courage and love for each other is strength that you share with us all.  Tonight, Michelle, there are many prayers coming your way from a lot of people.  I can't find the right words, but please know that the feelings are here for you guys, and I pray for your peace.

                                                                                                      hope4cure1
                                                                                                      Participant

                                                                                                        Michelle, if there was a way to make any of this easier for you and Don, I know a lot of people on this board would do just that.  Your courage and love for each other is strength that you share with us all.  Tonight, Michelle, there are many prayers coming your way from a lot of people.  I can't find the right words, but please know that the feelings are here for you guys, and I pray for your peace.

                                                                                                        Lauri England
                                                                                                        Participant

                                                                                                          I will be sending prayers your way. I am very sorry to hear things are not going so good.  Try to remain positive and know miracles happen every day.  Never lose hope… It is all we have.

                                                                                                          Lauri England
                                                                                                          Participant

                                                                                                            I will be sending prayers your way. I am very sorry to hear things are not going so good.  Try to remain positive and know miracles happen every day.  Never lose hope… It is all we have.

                                                                                                            Lauri England
                                                                                                            Participant

                                                                                                              I will be sending prayers your way. I am very sorry to hear things are not going so good.  Try to remain positive and know miracles happen every day.  Never lose hope… It is all we have.

                                                                                                              MariaH
                                                                                                              Participant

                                                                                                                Michelle,

                                                                                                                I am so sorry that your fight has come to this.  I know it is so heartbreaking for you and it is always difficult to hear that there is nothing more they (or you) can do.  May God give you peace and strength as you both walk down this path.

                                                                                                                You both are in my thoughts and prayers…

                                                                                                                Maria

                                                                                                                  Lisa13
                                                                                                                  Participant

                                                                                                                    Hi Michelle,

                                                                                                                    I'm sending prayers and all the good wishes I can send to you and your husband. I know how hard this has been on you and Don, so I continue to hope for a miracle and a better MRI as you may think.

                                                                                                                    You're in my thoughts.

                                                                                                                    Lisa

                                                                                                                    Lisa13
                                                                                                                    Participant

                                                                                                                      Hi Michelle,

                                                                                                                      I'm sending prayers and all the good wishes I can send to you and your husband. I know how hard this has been on you and Don, so I continue to hope for a miracle and a better MRI as you may think.

                                                                                                                      You're in my thoughts.

                                                                                                                      Lisa

                                                                                                                      Lisa13
                                                                                                                      Participant

                                                                                                                        Hi Michelle,

                                                                                                                        I'm sending prayers and all the good wishes I can send to you and your husband. I know how hard this has been on you and Don, so I continue to hope for a miracle and a better MRI as you may think.

                                                                                                                        You're in my thoughts.

                                                                                                                        Lisa

                                                                                                                      MariaH
                                                                                                                      Participant

                                                                                                                        Michelle,

                                                                                                                        I am so sorry that your fight has come to this.  I know it is so heartbreaking for you and it is always difficult to hear that there is nothing more they (or you) can do.  May God give you peace and strength as you both walk down this path.

                                                                                                                        You both are in my thoughts and prayers…

                                                                                                                        Maria

                                                                                                                        MariaH
                                                                                                                        Participant

                                                                                                                          Michelle,

                                                                                                                          I am so sorry that your fight has come to this.  I know it is so heartbreaking for you and it is always difficult to hear that there is nothing more they (or you) can do.  May God give you peace and strength as you both walk down this path.

                                                                                                                          You both are in my thoughts and prayers…

                                                                                                                          Maria

                                                                                                                          Carol Taylor
                                                                                                                          Participant

                                                                                                                            Michelle,

                                                                                                                            I'm so sorry. My heart breaks for the two of you. Prayers will continue as you continue your journey; it's not over. Give Don lots of hugs from all of us. I'd hug you myself if I could. You're trememdous. The two of you are quite blessed.

                                                                                                                            Grace and peace,

                                                                                                                            Carol

                                                                                                                            Carol Taylor
                                                                                                                            Participant

                                                                                                                              Michelle,

                                                                                                                              I'm so sorry. My heart breaks for the two of you. Prayers will continue as you continue your journey; it's not over. Give Don lots of hugs from all of us. I'd hug you myself if I could. You're trememdous. The two of you are quite blessed.

                                                                                                                              Grace and peace,

                                                                                                                              Carol

                                                                                                                              Carol Taylor
                                                                                                                              Participant

                                                                                                                                Michelle,

                                                                                                                                I'm so sorry. My heart breaks for the two of you. Prayers will continue as you continue your journey; it's not over. Give Don lots of hugs from all of us. I'd hug you myself if I could. You're trememdous. The two of you are quite blessed.

                                                                                                                                Grace and peace,

                                                                                                                                Carol

                                                                                                                                Gene_S
                                                                                                                                Participant

                                                                                                                                  Michelle,  I am so sorry to hear this sad news.  I hope you are able to find some comfort in all of us that are praying for you and Don.  You have been a real asset to this board and I really appreciate all the information and updates you have given us.  You will be in my thoughts with the hope of some good news.  Please keep us posted.

                                                                                                                                  Judy (loving wife and caregiver of Gene)

                                                                                                                                  Gene_S
                                                                                                                                  Participant

                                                                                                                                    Michelle,  I am so sorry to hear this sad news.  I hope you are able to find some comfort in all of us that are praying for you and Don.  You have been a real asset to this board and I really appreciate all the information and updates you have given us.  You will be in my thoughts with the hope of some good news.  Please keep us posted.

                                                                                                                                    Judy (loving wife and caregiver of Gene)

                                                                                                                                    Gene_S
                                                                                                                                    Participant

                                                                                                                                      Michelle,  I am so sorry to hear this sad news.  I hope you are able to find some comfort in all of us that are praying for you and Don.  You have been a real asset to this board and I really appreciate all the information and updates you have given us.  You will be in my thoughts with the hope of some good news.  Please keep us posted.

                                                                                                                                      Judy (loving wife and caregiver of Gene)

                                                                                                                                      NYKaren
                                                                                                                                      Participant

                                                                                                                                        Michelle,

                                                                                                                                        You are truly awesome.  You and Don are in my thoughts and prayers.

                                                                                                                                        karen

                                                                                                                                         

                                                                                                                                         

                                                                                                                                         

                                                                                                                                        NYKaren
                                                                                                                                        Participant

                                                                                                                                          Michelle,

                                                                                                                                          You are truly awesome.  You and Don are in my thoughts and prayers.

                                                                                                                                          karen

                                                                                                                                           

                                                                                                                                           

                                                                                                                                           

                                                                                                                                          NYKaren
                                                                                                                                          Participant

                                                                                                                                            Michelle,

                                                                                                                                            You are truly awesome.  You and Don are in my thoughts and prayers.

                                                                                                                                            karen

                                                                                                                                             

                                                                                                                                             

                                                                                                                                             

                                                                                                                                            James from Sydney
                                                                                                                                            Participant

                                                                                                                                              Hi Michelle, so sorry to hear about Don's complications. Our son had a large tumor that bled and he was vague and forgetful until he could not be aroused they put him into emergency surgery and removed the tumor and drained the bleeding, for what its worth he bounced right back and survived for another 6 months. Your Docs would have seen this before they will advise if its worth operating. Its a very emotional time and sometimes hard to make decisions just know we are all thinking of you both.

                                                                                                                                              best wishes

                                                                                                                                              James

                                                                                                                                              James from Sydney
                                                                                                                                              Participant

                                                                                                                                                Hi Michelle, so sorry to hear about Don's complications. Our son had a large tumor that bled and he was vague and forgetful until he could not be aroused they put him into emergency surgery and removed the tumor and drained the bleeding, for what its worth he bounced right back and survived for another 6 months. Your Docs would have seen this before they will advise if its worth operating. Its a very emotional time and sometimes hard to make decisions just know we are all thinking of you both.

                                                                                                                                                best wishes

                                                                                                                                                James

                                                                                                                                                James from Sydney
                                                                                                                                                Participant

                                                                                                                                                  Hi Michelle, so sorry to hear about Don's complications. Our son had a large tumor that bled and he was vague and forgetful until he could not be aroused they put him into emergency surgery and removed the tumor and drained the bleeding, for what its worth he bounced right back and survived for another 6 months. Your Docs would have seen this before they will advise if its worth operating. Its a very emotional time and sometimes hard to make decisions just know we are all thinking of you both.

                                                                                                                                                  best wishes

                                                                                                                                                  James

                                                                                                                                                  Rocco
                                                                                                                                                  Participant

                                                                                                                                                    Keeping you both in my prayers.  So very sorry to hear of this turn of events.

                                                                                                                                                    Rocco

                                                                                                                                                    Rocco
                                                                                                                                                    Participant

                                                                                                                                                      Keeping you both in my prayers.  So very sorry to hear of this turn of events.

                                                                                                                                                      Rocco

                                                                                                                                                      Rocco
                                                                                                                                                      Participant

                                                                                                                                                        Keeping you both in my prayers.  So very sorry to hear of this turn of events.

                                                                                                                                                        Rocco

                                                                                                                                                        Tim–MRF
                                                                                                                                                        Guest

                                                                                                                                                          Michelle:

                                                                                                                                                          I am a bit late reading your update, but want to add my support to the others written here (and, no doubt, the many, many more who did not write).  

                                                                                                                                                          I am sorry for this development.  Please know you have a lot of people holding you close in their hearts and minds.

                                                                                                                                                           

                                                                                                                                                          Tim–MRF

                                                                                                                                                          Tim–MRF
                                                                                                                                                          Guest

                                                                                                                                                            Michelle:

                                                                                                                                                            I am a bit late reading your update, but want to add my support to the others written here (and, no doubt, the many, many more who did not write).  

                                                                                                                                                            I am sorry for this development.  Please know you have a lot of people holding you close in their hearts and minds.

                                                                                                                                                             

                                                                                                                                                            Tim–MRF

                                                                                                                                                            Tim–MRF
                                                                                                                                                            Guest

                                                                                                                                                              Michelle:

                                                                                                                                                              I am a bit late reading your update, but want to add my support to the others written here (and, no doubt, the many, many more who did not write).  

                                                                                                                                                              I am sorry for this development.  Please know you have a lot of people holding you close in their hearts and minds.

                                                                                                                                                               

                                                                                                                                                              Tim–MRF

                                                                                                                                                              shellebrownies
                                                                                                                                                              Participant

                                                                                                                                                                UPDATE:

                                                                                                                                                                First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

                                                                                                                                                                 

                                                                                                                                                                The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

                                                                                                                                                                Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

                                                                                                                                                                Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

                                                                                                                                                                The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

                                                                                                                                                                I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

                                                                                                                                                                Michelle

                                                                                                                                                                  Bubbles
                                                                                                                                                                  Participant

                                                                                                                                                                    Dear Michelle,

                                                                                                                                                                    You don't know me, but I've read of yours and your husband's struggles even before all this.  I think you are both amazing.  I am the patient…and though that hasn't been easy…I have often thought it has all been harder on my husband…trying to care for me and make things work for our kids.  His theme song is the same Tom Petty song you have listed as your mantra.  I wish there was a way it could all be easier.  I wish you both peace.  So many folks here genuinely care…but I think you know that already.  I think of you and Don daily.  Yours, Celeste 

                                                                                                                                                                    Bubbles
                                                                                                                                                                    Participant

                                                                                                                                                                      Dear Michelle,

                                                                                                                                                                      You don't know me, but I've read of yours and your husband's struggles even before all this.  I think you are both amazing.  I am the patient…and though that hasn't been easy…I have often thought it has all been harder on my husband…trying to care for me and make things work for our kids.  His theme song is the same Tom Petty song you have listed as your mantra.  I wish there was a way it could all be easier.  I wish you both peace.  So many folks here genuinely care…but I think you know that already.  I think of you and Don daily.  Yours, Celeste 

                                                                                                                                                                      Bubbles
                                                                                                                                                                      Participant

                                                                                                                                                                        Dear Michelle,

                                                                                                                                                                        You don't know me, but I've read of yours and your husband's struggles even before all this.  I think you are both amazing.  I am the patient…and though that hasn't been easy…I have often thought it has all been harder on my husband…trying to care for me and make things work for our kids.  His theme song is the same Tom Petty song you have listed as your mantra.  I wish there was a way it could all be easier.  I wish you both peace.  So many folks here genuinely care…but I think you know that already.  I think of you and Don daily.  Yours, Celeste 

                                                                                                                                                                        mombase
                                                                                                                                                                        Participant

                                                                                                                                                                          Dear Michelle,

                                                                                                                                                                          Thank you for the update. I can't imagine how hard it must be for you to see Don in different states in such a short amount of time. I am so glad you are able to be there for both of you to enjoy his lucid states. Hearing that he called you Shellie is very heartwarming!

                                                                                                                                                                          I am still praying for more of these moments and reduced symptoms with reduction of steroids…

                                                                                                                                                                          Cristy, Stage IV

                                                                                                                                                                          mombase
                                                                                                                                                                          Participant

                                                                                                                                                                            Dear Michelle,

                                                                                                                                                                            Thank you for the update. I can't imagine how hard it must be for you to see Don in different states in such a short amount of time. I am so glad you are able to be there for both of you to enjoy his lucid states. Hearing that he called you Shellie is very heartwarming!

                                                                                                                                                                            I am still praying for more of these moments and reduced symptoms with reduction of steroids…

                                                                                                                                                                            Cristy, Stage IV

                                                                                                                                                                            mombase
                                                                                                                                                                            Participant

                                                                                                                                                                              Dear Michelle,

                                                                                                                                                                              Thank you for the update. I can't imagine how hard it must be for you to see Don in different states in such a short amount of time. I am so glad you are able to be there for both of you to enjoy his lucid states. Hearing that he called you Shellie is very heartwarming!

                                                                                                                                                                              I am still praying for more of these moments and reduced symptoms with reduction of steroids…

                                                                                                                                                                              Cristy, Stage IV

                                                                                                                                                                              boot2aboot
                                                                                                                                                                              Participant

                                                                                                                                                                                i am truly saddened to hear of this latest setback in a long line of them…you guys fought hard, gave it your best…

                                                                                                                                                                                is surgery an option? 

                                                                                                                                                                                maybe not as they would have to take him off yervoy…

                                                                                                                                                                                oh, michelle, i just don't know what to say..except i am truly sorry..

                                                                                                                                                                                boots

                                                                                                                                                                                boot2aboot
                                                                                                                                                                                Participant

                                                                                                                                                                                  i am truly saddened to hear of this latest setback in a long line of them…you guys fought hard, gave it your best…

                                                                                                                                                                                  is surgery an option? 

                                                                                                                                                                                  maybe not as they would have to take him off yervoy…

                                                                                                                                                                                  oh, michelle, i just don't know what to say..except i am truly sorry..

                                                                                                                                                                                  boots

                                                                                                                                                                                  boot2aboot
                                                                                                                                                                                  Participant

                                                                                                                                                                                    i am truly saddened to hear of this latest setback in a long line of them…you guys fought hard, gave it your best…

                                                                                                                                                                                    is surgery an option? 

                                                                                                                                                                                    maybe not as they would have to take him off yervoy…

                                                                                                                                                                                    oh, michelle, i just don't know what to say..except i am truly sorry..

                                                                                                                                                                                    boots

                                                                                                                                                                                    dearfoam
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Michelle, I can't recall what post it was but saw somewhere Don was doing a little better today, and just wanted to say I am glad to hear it!

                                                                                                                                                                                      -DF

                                                                                                                                                                                      dearfoam
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Michelle, I can't recall what post it was but saw somewhere Don was doing a little better today, and just wanted to say I am glad to hear it!

                                                                                                                                                                                        -DF

                                                                                                                                                                                        dearfoam
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Michelle, I can't recall what post it was but saw somewhere Don was doing a little better today, and just wanted to say I am glad to hear it!

                                                                                                                                                                                          -DF

                                                                                                                                                                                        shellebrownies
                                                                                                                                                                                        Participant

                                                                                                                                                                                          UPDATE:

                                                                                                                                                                                          First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

                                                                                                                                                                                           

                                                                                                                                                                                          The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

                                                                                                                                                                                          Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

                                                                                                                                                                                          Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

                                                                                                                                                                                          The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

                                                                                                                                                                                          I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

                                                                                                                                                                                          Michelle

                                                                                                                                                                                          shellebrownies
                                                                                                                                                                                          Participant

                                                                                                                                                                                            UPDATE:

                                                                                                                                                                                            First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

                                                                                                                                                                                             

                                                                                                                                                                                            The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

                                                                                                                                                                                            Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

                                                                                                                                                                                            Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

                                                                                                                                                                                            The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

                                                                                                                                                                                            I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

                                                                                                                                                                                            Michelle

                                                                                                                                                                                            elias74
                                                                                                                                                                                            Participant

                                                                                                                                                                                              I'll pray for You.

                                                                                                                                                                                              I'm with you, evry time, evry day.

                                                                                                                                                                                              We are the fighters.

                                                                                                                                                                                              elias74
                                                                                                                                                                                              Participant

                                                                                                                                                                                                I'll pray for You.

                                                                                                                                                                                                I'm with you, evry time, evry day.

                                                                                                                                                                                                We are the fighters.

                                                                                                                                                                                                elias74
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  I'll pray for You.

                                                                                                                                                                                                  I'm with you, evry time, evry day.

                                                                                                                                                                                                  We are the fighters.

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