EastCoastLadi

Sue, My heart goes out for you at this difficult time. Big (((HUG))) for you. Grace

thank you don for the update, my prayers go out to teri and her family grace

Carlene, I hate what Keith and you are going through right now, please know I am here for both of you, whatever I can do, please let me know, right now I am praying that everything works out for you and Keith. Never give up hope, you have so many people who are praying for both of you. Grace

Awesome Gina and Joe!!!!! Grace

I am so sorry about all your husband has gone through. My husband has extensive sclc and I can tell you that w/ sc it moves very quickly, but if it is and he is on chemo, sc does respond well to chemo, I don't know what his schedule of treatment is, my husband's first 6 rounds were 3 days every 3 weeks of cisplastin and etopiside and after 2 rounds the cat showed reductions in his lung and liver tumors. I know you must be extremely frustrated w/ the not knowing exactly, I know that sometimes there can be large and small cells together, but i don't know how common or uncommon that is. I also have 2 young children ( girls 8 and 11 ) and they're now use to seeing daddy very tired and not feeling well. My prayers are going out for you and your family. and please if there is any way I can help please don't hesistate to email me. please make sure to try to take care of yourself, the boys need you.... Grace

Andrea, I am so sorry, please take care of yourself. Grace

..Rose is in my prayers tonite Grace

Oh Carleen, When does all the pain stop!, and why? I ask my self alot these days, you don't need any more, but for whatever reason..it is happening to you, I, like others unfortunately totally understand. Carleen, stay strong, like the strong woman you are! You have many people here who are here for you, whenever and in whatever way you need no matter how big or small. I'm sending my prayers to you and your family... Grace

Debbie, your situtation with your husband hits too close to home for me. My husband first had cisplastin and etopside, and it worked on his lung and liver, then he finished 6 rounds, went for brain scan and found 17 mets, so then he needed to go for wbr, so once he stopped chemo, bam now radiation for 4 weeks, so he's done that and gets a chest scan yesterday, and we find out today that his tumor in his lung and liver have doubled/almost trippled in size! not good...so the next option for my husband is more chemo, there are many different "combos" for sclc, he wants my husband to start next week, of course i broke down, my husband says i'm more stressed then him, but his onc is very good and tells him he's checking with thorastic onc in boston, and also checking out dana farber for any trials that may be right for him. Debbie I know even waiting a day or two can seem forever, especially with sclc and when it is extensive time is of the essence. I would say if your husband has a good primary care dr. to call him and have him talk w/ the oncs where your husband is going. I know these drs. sometimes don't want to "interfer" with other drs. patients, but I think it's your husbands' life here, and if he wants to know, who cares what onc. tells him, because he is the one who has to decide what he wants to do. So Debbie, please don't hesistate to email me, like i said i know all to well... Grace

Jorja, I am so sorry about your dad, please know my prayers go out for you and your family. Grace

Jorja, I'm praying for your dad, hopefully the drs. can get down to what exactly is happening and help your dad. Grace

Cindy, This hits so close to home for me. I saw my dad dying from cancer right before my very eyes too. and he didn't want to die, he fought so much to the very end, he lived for weeks when the drs. said it would be for days. But as you know we don't have that control over this dreaded disease (in whatever form)...My dad was in the hospital for a month and had enough of treatment and wanted to come home, all of us just lived one day at a time. What I personally told my dad was it was alright to go, that he didn't fail me or our family, all I ever wanted was my dad not to be in the horrible pain we had seen him in for months. Cindy there are no magic words, you just speak to your dad from your heart, remember it is him who is going through all this pain, and we are all human and it's ok to be selfish to want someone around, never to leave. I remember telling my dad whatever he wanted it was ok by me, nothing profound, just simple.....my heart goes out to you at this time, I found at those moments with my dad there was no right or wrong, it was just what was happening in the moment. Grace

Malou, My prayers go out to you tonite, I'm so very sad to hear about Thomas, I know that this is so so difficult for you and your family, please make sure you take care of yourself. Grace

Janice, I am so sorry about your dad, I send my prayers to you and your family. Please know you can come here any time for support and comfort. God bless. Grace

Darrell, I am so thrilled at that wonderful accomplishment and what a fantastic attitude you have!!!! You have that fighting spirit that is going to take you a very long way!!!!! Grace

Tina, My husband had one placed in his upper left side chest after his first round of chemo, the procedure was simple and he had no pain, it did make it easier for the nurses to administer his chemo, and they took care of flushing it out. Also he doesn't have to worry about it when he's taking any tests like catscans, mri's or petscans. He isn't in chemo as of now, but his dr. wanted to keep it in him, because he probably will be going for more chemo in the near future, and now the nurses just flush it once a month. Grace

I am very sorry about your dad, I too lost my dad this past Aug. and know how difficult it must be for you and your family. My prayers and thoughts go out to you all. Grace

Carleen, I am very happy to hear that Keith is finally making some good progress, I totally understand how exhausted you must be, but like Donna said you must take care of yourself, even if it's only for a few minutes a day. Sending more prayers your way. Grace

Teri, Even though we don't know one another, I am sending my prayers and good, positive thoughts your way. From what I have read from and about you, you are a very strong and uplifting person, I know that with those wonderful qualities and hospice you will overcome your pain. I wish you peace and love. Grace

Stephanie, I have to say, you have come to the right place, I know it must seem so surreal to you, and it does truly suck, one bad thing after the other, it isn't fair! I wish I had the answer to "why?". You're worried and rightfully so, but please know one thing you are not alone....you will find many, many kind and wonderful people here who will be there for you.. and if I can help you in anyway...please don't hesitate to let me know....many prayers and good thoughts are going out for you and your family right now. Grace

Cindy, I am so sorry about your dad, I can understand exactly how you feel, I went through a similar situation with my dad last summer, his bladder cancer had spread all over, and after a month in the hospital they did all they could do and all of my family, including my dad agreed that it was time for hospice. His dr. thought he would only last the weekend, but my dad was tough and stayed with us 7 weeks, I never knew my dad was such a strong person, but I knew at least he was not in pain.....I pray that you and your family will have the strength... Bless you... Grace

In my never-ending search for information, I happened upon this article from a couple of years back....it just brings tears to my eyes Grace (Jane Brody, NY Times)---The letter that appears below was written by the husband of a woman whose oncologist had cared for her for nearly seven years, and then abandoned her in the final weeks of her life. A copy of the letter was sent to Dr. Diane Meier, director of palliative care at Mount Sinai Medical Center. Dr. Meier told me, "I have seen this happen hundreds of times, causing profound hurt and injury to the patient and family that compounds the losses a thousandfold. Patients wonder what they did to offend their doctor, why they are no longer worthy of attention. And, of course, patients do not realize that since they 'failed' therapy, the doctors feel they 'failed' the patient. When patients are so sick, the doctor-patient relationship is deeply personal and vulnerable and unequal. Doctors need to know the cost of this behavior for their patients, whose interests they are sworn to put first." So, like Dr. Meier and the bereaved husband who wrote this eloquent letter, I am hoping that physicians whose patients no longer respond to active therapy will read this column. The husband chose to bring his wife's experience to public attention in the hope that other dying patients will be spared similar anguish. I have deleted the doctor's name, the name of the patient, and the hospital where she was treated, because the point is to highlight not the specifics of this case, but the broader point about a behavior that, as Dr. Meier points out, is all too common. The doctor works at a major New York cancer center. ====================================== Dear Doctor: I'm writing to you in reference to my wife, who died on May 29, 2004. I wish to make clear from the outset that I am not impugning your medical competence but am seeking to bring to your attention what, in my opinion, constitutes a grave breach of the moral contract you entered into with her. As you know, my wife was diagnosed with lung cancer in 1997 and was treated successfully by you for almost seven years. During that time, she developed a relationship of confidence with you which, given her many unhappy past experiences with doctors, was both encouraging and surprising. And yet, at the end, to her (and my) profound disappointment, you failed her. When you realized that you could do no more to reverse her progressive disease and that death had become inevitable, you abandoned her. You evaded her telephone calls; you waited 10 days before informing her of the April 2004 CAT scan results; you pulled away. The empathy you had displayed was replaced by what she experienced as indifference. And, sadly, your behavior dovetailed perfectly with the New York Times article "Facing Up to the Inevitable, in Search of a Good Death" of Dec. 30, 2003, which speaks of physicians who withdraw from patients rather than address feeling 'guilty, insecure, frustrated and inadequate.' It is true that you informed my wife, offhandedly, that the hospice staff would care for her during the final phase. As they did - with dedication and great dignity. However, your coldness during her final weeks made it more difficult for us because she felt that she had lost the medical anchor you had provided and no longer had a doctor she could trust to explain what was happening to her as her body withered and her vulnerability grew. Much precious time was wasted trying to turn her mind from your dismissal of her that she experienced as a professional and personal betrayal. Which I believe it was. Would it have cost you so much, doctor, to have picked up the telephone to speak with her after almost seven years of treatment? Would it have been so intolerable to you to have looked into her eyes - at the hospice perhaps - and told her that you wished her well and wanted a chance to say goodbye? Were you truly unable to offer even a shred of comfort, a word of condolence to her family? Had she really become no more than another statistic, a failure you preferred to brush aside? I am asking you to help ensure that oncologists like yourself, who work with many patients they are bound to lose, not abandon them emotionally, as you did. I am asking that you suggest that your hospital consider setting up a training program for doctors like yourself so that other patients can be spared the pain of the rejection my wife experienced. Because it is my conviction that doctors treating terminally ill patients have a moral obligation to stand with them from start to finish even when, at the end, those patients must be transferred to hospice care. It is not easy for me to tell you that from this perspective, I believe that your failure was monumental. Perhaps this letter will help you display greater feeling with future patients and not ask them, as you did my wife from a distant height, 'What would you like us to do for you?' What she wanted you to do was simple: she wanted you to speak to her with courage; she wanted you to show a bit of concern, which would have meant as much to her then as all the chemotherapy you prescribed when there was still hope; she wanted you to help her die more peacefully - as you had promised that you would but did not. It would have made the work of the hospice staff easier. It would have been a consolation to her and to the family and friends who loved her. =========================================== Dr. Dan Shapiro, a clinical psychologist at the University of Arizona, is one of a growing number of experts who teach medical students and physicians the importance of healing patients even when they cannot cure them. He pointed out that "when patients are referred to hospice care, some doctors think that it's their cue to bow out." At that point, he suggests that patients make it clear to their physicians that they want them to stay involved. Dr. Shapiro advises patients to tell their doctors: "I don't expect miracles from you. I appreciate everything you've done up to now. I and my family would be grateful, even though I may be dying, for your continued help with my quality of life and dignity." Patients might then add a specific request, he said, like asking for help on how to remain clear-headed while still getting appropriate pain relief. Such a statement expresses gratitude and takes the physician off the hook by saying that the patient does not expect miracles but would like help in achieving a peaceful end, Dr. Shapiro said. "This makes the physician feel useful and less likely to retreat."

Ben, Please don't give up on yourself, I know that this all can be overwhelming and confusing, but you've done one of the best things you could do is find this place! You will find the most kind and compassion people here, who not only can personally relate, but can give you valuable advice and direction. As many have said, you need the 2nd opinion, I know you went thru the VA, but please don't take offense, but the VA may not be the best place to deal with your cancer ( I know my dad was a disabled Vet ) and his best treatment was outside of the VA. Please re-think about another opinion, you have many people here thinking about and praying for you..... Grace

Carleen, I know we chatted on tuesday, i'm thinking about you and keith, if you need to chat, email me i'm here for you, lots of prayers going out to you the keith...

Missy, I too am so sorry to hear about your mom, it is so emotionally exhausting to endure the highs and lows of all of it. But I agree with finding out more about what's happening to your mom. Don't be afraid to ask questions and even ask or demand a second opinion. Please know that many people are praying for you and your mom. Grace