Pamela

Andrea, I know what you mean about the stress. It's hard to explain to someone who's not in the fight, but I FEEL it all the time. No matter what I'm doing or where I am, underneath the surface there is an acute awareness about Dad's cancer. I have to act normal and smile and laugh and do the work I'm paid to do and fix dinner and do laundry, but all the while I feel the fear and worry eating away. I read voraciously about lung cancer -- it's almost an obsession. I'm afraid I'll miss something that might make a difference. I sleep, but I don't really rest. I talk to others, but I'm never all there. Isn't it great to have this group? You've got a lot of friends here who understand and care. Hang in there! Pam

Thanks, everyone, for your help and advice. My youngest brother is with Dad now and, after seeing him, has agreed to hospice. So Dad will have someone there who can make sure he doesn't suffer unnecessary pain. That eases my mind a lot. Right now he is very weak, in and out of lucidity, but no pain. In a way it's strange to be sharing this most profound experience with people I've never met. But I feel more acceptance and understanding and empathy from this group than from any of the people I know -- including my own husband children. It's not that they're uncaring; it's just that they don't "feel it" the way I do. I guess you have to go through it to understand it. Again, thanks. I appreciate everything. Pam

I have been reading all the updates and learning so much from everyone, that I thought it only fair to post what's happening with my Dad. Maybe it will mean something to someone else down the road. Hard to believe that only 7 months ago I absolutely never thought about lung cancer. Never crossed my radar screen. Now my life is dominated by it. It is almost inconceivable how much Dad has endured in just 6-1/2 months. Lung cancer has taken a strong, independent, vibrant man and crushed him -- and it's not through with him yet. Every day I wonder what new torture it will bring. Dad has almost stopped eating and drinking. He'll take a few bites or take a sip of liquid if someone insists, but not enough to keep him going. He sleeps most of the day and isn't fully lucid when he's awake. His muscles have deterioriated to where he can't hold his head up anymore. We have been grateful that he hasn't had any pain during the whole 6-1/2 months. Until today. This morning Dad is having pain in his lower back, not a sharp pain but a dull throbbing pain. We don't know what it is. He has mets to the spine so it could be that. Or it could be his kidneys from the lack of fluid. Or it could be a kidney infection. Or it could be something we haven't even thought of. He's in a really small town in West Texas and there's no doctor there. To get him to a doctor would require a trip of at least 45 miles. And then we're afraid they'd want to hospitalize him, which he would hate, hate, hate. Right now there's a great debate taking place among his four children and his wife about what to do next. One brother and I want to call hospice, but two brothers aren't ready to take that step. My stepmother is overwhelmed by the situation and she doesn't know what she wants to do. Dad isn't at a place where he can tell us. When he can talk, he just says he wants to be left alone so he can sleep. This is so hard. Dad is miserable, and it tears me up to think what he's going through. Nothing about this has been easy, but this is devastating. I'm not thinking clearly. We want to do the right thing for Dad, but we don't know what that is. Please help me! My head is spinning. Pam

Hi, Ben. When I read your post, I vividly remembered the shock, fear, and just plain confusion we felt during the first few weeks after Dad was diagnosed. You hear medical terms and drug names and statistics (I hate statistics). A picture starts to form, but it is so incomplete that you don't know what's really happening or what information to trust. From our experience with Dad, I would recommend that you begin organizing information in a binder or some system that works for you. You or your dad should write down what is said during each visit to the doctor -- or phone calls to the doctor. Record the date of each CT scan or MRI or PET scan, and get a copy of the reports. There is so much information -- and emotion can cloud your hearing -- so you don't always take it in at the time. Reviewing it can be a great help later as you begin to understand more about the disease and treatment. I also strongly recommend that you research each and every medication that your mother is given. Know what the typical dosage is, possible side effects, possible adverse reactions and drug interactions. Then if you see something that doesn't seem right, you'll be able to ask informed questions. Remember that oncologists are people, too. They do the best they can, but they aren't always right and sometimes they just make mistakes. If you do not understand something or if you have a feeling in your gut that things just aren't right, speak up. Ask here. You'll get answers AND support. As said by others, your mother needs an advocate. If your dad can't do it, you may have to. Please don't assume that your mother and your family can put everything in the hands of the doctors and go along for the ride. The better informed you are, the better things will be for your mother. I'm sorry you have to go through this. But it sounds like you already understand that supporting your mother during this time is an honor. I'm pulling for your mother! Pam

Cheryl, Nothing to add to what has been said, but I wanted to offer encouragement. I have been following your posts because your heart shows in everything you write. It is clear that you are a very good person, and I wanted you to know that my thoughts and prayers are with you. Pam

Joni, I'm so sorry you have to go through this. I'll give you my perspective, for what it's worth. I think you go through the expected motions because your loss is so incredibly deep and profound that it would feel like an invasion of privacy to show it in front of others. There is a private world between a husband and wife in love that no one -- not even their children -- can really be a part of. You guard that world and the aching loss of your soulmate because it is too precious to let anyone else share it. They do not understand. They were not part of it. It was a place only you and Robert shared. You will grieve with your son for the loss of the father and leader of the family, and together you will grieve the wound to your family. You will grieve with friends for the loss of a friend. You will grieve with his parents for the loss of a son, and with siblings for the loss of a brother. But no one can grieve with you for the loss of your soulmate, best friend, lover. The only person who could share that loss with you is Robert, and he's not there. When everything settles, you will grieve privately. And I believe with all my heart you will feel Robert comforting you. My heart aches for you. Be good to yourself. Pam

Jane -- welcome. I'm sorry you have to be here, but it sure helps to have a group like this who know what you're going through and CARE, REALLY CARE! I live in Independence, MO, and both my son and daughter-in-law went to MU. My daughter-in-law, Shelley, received her nursing degree there and worked at the Ellis Fischel Cancer Center for about 4 years. I'm with Dean. I'm looking forward to your announcement that you have your Ph.D! Pam

Oh, you must be hurting so bad. I'm sorry. Pam

Add my prayers. Maybe tomorrow's visit will bring just the right answer for the pain. Pam

Ooops! I think I worded the first sentence wrong. I mean I'm with you and ANGRY AT THE DOCTOR. Sorry if it came across wrong. You go, girl!!! Pam

Denise, I'm angry with you! That kind of thing really ticks me off. We've had the same experience with our Dad several times with several different oncologists. We work to keep him positive, and they want to make sure that he is fully aware at all times that they think he is dying. It's infuriating. I have promised myself that the next time a doctor wants to make sure Dad knows that he is dying in x number of months, I'm going to let that doctor know that he is a jackass whose quality of life may suffer if he continues to make that kind of ill-advised prediction! Tell your Mom that doctors have been wrong many, many, many times. Until they can part the Red Sea, just ignore them. I know what you're doing is very difficult, so hang in there! Pam

Robin, I'm sorry for your pain and sadness. Please stay in touch. Even though your mom's battle is over, we still need each other! Pam

Jana -- Thanks for saying it. I feel the same way. Pam

Amy, Dad lives in Kermit, Texas. (Probably no one here has heard of it.) His radiation oncologist was at the West Texas Cancer Center. That oncologist was the one who forgot (oops!) to taper down the Decadron from 16 mg a day, resulting in steroid myopathy. Dad was also treated at M. D. Anderson in Houston and Scott & White in Temple, Texas. The absolute worst care he received was in the Symptom Control & Palliative Care unit of M. D. Anderson. I would never, ever, ever, ever suggest anyone allow those quacks to touch them. They didn't do much except prescribe 12 medications that interacted with each other and his lung infection -- which they did not find even after Dad was in the hospital for 2 weeks complaining that his chest hurt ("Lung cancer. Get used to it." they said) -- to produce the most god-awful case of delirium you have ever seen. Anyway, I hate being negative. I've learned here that Dad's not the only one who has experienced less-than-stellar medical care, and it can't be undone now. Thanks for asking. Sorry for the rant. Pam

Ginny, I don't know what to say, but I wanted to say something. My prayers are with you and Earl. Pam

Denise, I understand. I think I know what you're going through. I am torn between wanting to be Dad's hard-hitting coach and wanting to let him do whatever he wants, even if it looks like giving up. He's a tired, sick, depressed person. He cannot do the things that made life good for him. He doesn't know how to be this tired, sick, depressed person that disease and doctors have forced him to be. Of course, my brothers and I want to be a good reason for him to keep fighting. We want him to hang around, and we want that to be enough for him. It's not. I hear the cry of your heart. You want to do the right thing for your mother. You want to be her champion, her friend, her strength. And she doesn't know how to tell you what she wants. Maybe she doesn't even know what she wants. So you try harder and harder. It's a tough place to be. Does she need someone to tell her she can do it? Or does she need someone to tell her it's okay to let go? Is it quitting to decide that the battle may not be worth winning if it means adding months or years of more suffering, more fear, more uncertainty, more rollercoaster emotions of hope and bad news? My brothers want to fight with everything they've got. They want to push Dad to fight harder. They may be right. But I believe in the spirit of each life, that life force within your mother that makes her a unique creation of God. If that spirit can be in a loving, peaceful place -- surrounded by people who accept her and her decisions with confidence and unconditional love with no obligations placed on her -- I believe she will come to know what she needs. Maybe she'll decide to fight harder; maybe she won't. It's hard to do that. I haven't been able to do it with Dad yet because I fear what he will decide. But I'm trying. This is his journey. He needs to do it on his terms. I just need to come to a place where I can let go and trust him. Denise, I appreciate your deep love for your mother. I appreciate your heart and the openness of your posting. Pam

My brother called tonight and my dad has been coughing up blood the last day or so. I've read about people coughing up yellow and green mucous, but I don't know what blood means. Is it infection or is it the cancer? Or something else? He is not on any medications except Zoloft and Pepcid. He has not had any chemotherapy, only WBR. Any suggestions or comments are welcome. We just can't drag him back to a hospital unless it's acute and needs immediate attention. He was gone for more than 3 months, and he's only been home for 5 days. He's not in any pain and he's not having any difficulty breathing. Thanks! Pam

Luannie, I'm sorry about your mother. I know how overwhelming all of this can be, and I'm glad you've come to this forum for support. The Decadron will also help with swelling in the brain from the radiation. It works wonders for that. It would be a good idea to read everything you can find about Decadron, especially if your mother continues to take it after radiation. The dosage is VERY important, and you'll need to be alert to side effects. Your mom should be very careful to take each dosage as prescribed -- don't let her forget a dosage or quit suddenly. You have to taper off. My father was taking 16 mg per day during WBR and the radiation oncologist forgot to taper down the dosage when the tumors started shrinking. After taking that extremely high dosage for weeks, Dad lost all muscle tone in his legs, arms and neck. Three months after going off Decadron, he still can't stand up because his leg muscles are so weak. He can use his hands now, but I cried last week when I saw what effort it takes for him to sign his name! You may also want to read about side effects from the radiation. Dad had sores in his mouth, "burns" on his ears and thighs, and, of course, fatigue. Depending upon the number and size of the brain mets, you may also want to look at stereotactic radiation or gamma knife radiation. There are fewer potential side effects than with WBR, and it has been shown to be very effective. Good luck -- and let us know how things go with your mother (and you). We've all been where you are, and we want to help if we can. Pam

Thanks, Lily. I know it must be very scary for others to hear our stories . . . and it may seem unbelievable. I'm not sure I would have believed it if I hadn't experienced it. I was reading about Jackie Onassis in Readers Digest last night, and she was given such high doses of steroids for her brain mets that her stomach perforated. And you know she had the best care money could buy! When you read something like that, your tendency is to accept that it couldn't be helped, and that may be true in her case. But I can't help but wonder. I don't think malice is intended by doctors treating cancer patients. I just think they aren't paying attention as much as they should. Medications are wonderful and prevent so much suffering, and I am very glad that things like Decadron and morphine and Vicodin are available. A neuro-oncologist told us that prescribing medications is an art. A doctor has to evaluate whether a medication may do more harm than good or whether other options might be better than medication. If prescribing medication, he has to determine what medication, how much, when to give it, and WHEN TO STOP. Along the way, he has to make decisions about what he thinks the patient should or should not be told about possible side effects and adverse reactions. If he alerts the patient, it may cause anxiety. If he doesn't alert the patient, dangerous side effects could be ignored. What a terrible education all of this is. I'm so glad that there is a group like this! Thanks, everybody, for being there. Pam

Well, Dad went home from the rehab hospital on Saturday. He's had a rough time, and he still can't walk, even with a walker. He has trouble getting from the bed to the wheelchair. For the past 4-5 weeks, he's been withdrawn, confused, fatigued. All he wants to do is sleep. He is lucid most of the time, but sometimes he says weird things. I went to see him a week or so ago, and he told me he didn't know how to read (which certainly isn't true) and there were times when he was definitely in another world. He's obviously depressed, but he's already taking 100 mg of Zoloft with no effect. The confusion is something else again. The doctor told us last week that he thinks Dad has radiation damage from the WBR. I read another post here about radiation necrosis, and so I researched that. Once again, I felt like we had been blindsided. We had no idea this could happen to him -- and we still don't know if it has. I can't tell you how it felt to see my strong, determined dad now a tired, confused little old man in a wheelchair. The worst part is knowing that nothing he has suffered so far is a direct result of the cancer itself! His doctors thought he would die soon so they weren't the least bit cautious with the medications or treatments they gave him. It is appalling how often we have encountered doctors who have the attitude, "He's going to die anyway. It doesn't matter when he dies or what kills him." 6 months after being diagnosed as Stage IV with brain and spine mets, he still has no pain whatsoever and does not need oxygen at all. However, he is in a wheelchair, weak, confused, depressed -- because of the medications and not the cancer. It wouldn't be so bad if the meds were chemo to fight the cancer, but these were meds taken to counteract the side effects of other meds which then required additional meds to counter those side effects, etc., etc., until he was on 12 different meds -- NONE OF THEM NECESSARY! All he's been taking for the last 2 months is Zoloft, Pepcid and a stool softener. Just venting. When Dad was diagnosed, all he wanted was to go fishing and enjoy what time was left. He still hasn't gone fishing. Now he doesn't even want to do that anymore. Sorry if this upsets anyone. I'm just really down today. The fight isn't over, but we're very discouraged. Pam

Phyllis, I agree with Ginny. When I read stories like yours, I want to scream . . . but I'm at work and they already think I'm nuts. After going through the many nightmarish experiences with Dad and the medical profession, I know the horror, frustration, anger and discouragement you must have felt. One thing for sure, you are one tough lady. You've learned how to get through the crap and keep going. Thanks for sharing. We're all with you. If you decide to sucker punch a doctor someday, we'll support you! Pam

I am so sorry about your daughter. I know she must be miserable. My dad had a lung infection that triggered other problems. His lung actually collapsed and he was put on a ventilator for a week. We were told that infections can get behind the cancer in the lung and that makes it difficult to clear up. If the antibiotics aren't working after 5 weeks, have they considered putting her in the hospital and trying IV antibiotics or something else? Let us know how it goes. My thoughts are with you. Pam

My father is having similar symptoms after WBR. But the weakness in the arms and legs began before the radiation -- it was due to high doses of Decadron. Is your mother still taking any meds that might be contributing? Dad just went home from rehab today, but he's not very lucid any longer. He knows who we are and where he is, but he has what I think are hallucinations. He asked the other day about the awning on the car. And he told me that he never learned to read (not true). He's been saying some weird things, and he can't seem to retain instructions from one physical therapy session to the next. A CT scan on Thursday showed that the brain mets are stable. No pain, no difficulty breathing. Just total muscle atrophy and mental confusion. Thanks for posting. Now I'm going to research radiation necrosis. I'll let you know if I find anything interesting about reversing or coping with it. Hope things get better for your Mom. It's excruciating to see someone you love deteriorate and feel so very, very helpless. Pam

Cheryl, My prayers are with you. Hope the CT scan brings good news! Pam

Steroid myopathy -- in nonmedical terms -- is steroid-induced weakness in the muscles of the arms, legs and neck. In my dad's case, he was taking (at the direction of an oncologist) 16 mg of Decadron daily for almost 3 months. Because he had a lesion on the cerebellum, which affects coordination and movement, doctors assumed his muscle weakness was caused by the brain tumor. He had whole-brain radiation that shrank the lesions considerably, and that dosage of Decadron was completely unnecessary. No attempt was made to decrease the dosage -- or even check the dosage. He became almost completely incapacitated before it was discovered that he was taking WAY TOO MUCH Decadron. His oncologist had simply forgotten to ramp him down to a lower dosage. (He is not taking Decadron at all now and there has been no recurrence of brain tumor symptoms whatsoever.) I live in Kansas City and Dad lives in West Texas. I visited him in the rehab hospital this past weekend, and he is still pain-free and does not have any breathing or other cancer-related symptoms. It makes me physically ill to see his continuing weakness and helplessness and know that it was caused not by cancer or cancer treatment but by carelessness on the part of his oncologist. Perhaps even worse, the steroid myopathy has cost him the opportunity of trying chemotherapy. Decadron is a wonderful med when used appropriately. But be very careful about the dosage, know possible side effects and watch for them, and do not try to decrease the dosage or go off of it without medical supervision. My two cents worth. Hope things improve soon for your Mom! Pam