mjb

I not only like it, I have started back through it. I'm seeing a lot of things I missed the first reading and I'm more aware, I guess, instead of numb. Thanks for the recommendation.

I am almost through this book and I agree it offers some excellent insight. I particularly liked that she said people always say they wish they "had done this" or "they hadn't done that" when they were going through the grief process but that it was all part of the journey to the person you become. I paraphrased that but you get the idea. I suspect people will look askance at some of the things I do and I so do not care - we have this one wonderful life with all it's joy and pain and we should really live it. Lung cancer, my husband, our journey - they will always be part of who I am regardless of what happens next. And I'm starting to look forward to the idea of new adventures I have yet to experience. I want to bring some laughter and joy to this world, not just reflect on my losses.

What you wrote: When you are surrounded by family, friends and work friends you tend to forget the pain. Every one thinks you are ok and coping. Be alone for a while especially where you were the happiest then the pain and loneliness hits hard. is so true! I spent this first Christmas in Houston with my children. It was different but we got through in pretty good shape. Then I came back home to my empty house and reality started setting in. I can't help wondering at times if I am still in shock or numb. I go along and don't cry for days and then the least little thing sets me off. I make plans for all the things I want to do and suddenly I wonder how I am going to get through the rest of my life without him. Scott once said that he knew if something happened to either one us, the other would pick back up and go on and be fine. I think that will happen. And I know that he came to me once in the night and comforted me and there at times that is all that keeps me going. Sometimes it just seems like I'm living on this different planet and I don't know the landscape or what the rules are. I didn't mean to whine and carry on, but that statement so accurately said what I've been feeling that I had to comment. Hugs to all. MJ

I would walk this path again even knowing where it ends, But I would hold your hand more tightly and hug you more often, I would spend more time memorizing your face and voice and I would hold more closely the moments of pure happiness. I would walk this path again and bear the fear, I would feel hope again and survive the ups and downs, Just in case this time it turned out the way I wanted, the way you always thought it would. I would walk this path again and be stronger, I would fight harder, challenge everyone, hold you so tightly that you would draw strength and survive in spite of what anyone said. I would walk this path again and again and again, Even knowing it leads to never ending pain and tears by day and night and lessons I don't want to have to learn. I would walk this path again because I miss you so much.

It's hard to come here and post about Scott's passing because he fought so long and hard and beat so many odds. He passed away October 4 with me, his son and his daughter at his side. All of his family managed to make it in to see him in his last few days of consciousness. He truly raised me up and gave me the freedom to be me for 41 years. I miss him. http://hosting-655.tributes.com/show/ch ... n-92487023 Charles "Scott" Bean, 59, of Roland, died October 4, 2011. He was born in Clarksville, Arkansas on November 15, 1951 to Joy and Clarence Bean, Jr., both deceased. He was owner of Scott Bean Plumbing, former President of the Little Rock Chess Club, a long-time youth baseball coach, and an avid hunter. He is survived by his wife, Marjean Bean, of Roland; children Zack Bean and Marguerite (Will) Taillac; siblings Dennis (Betty) Bean, Dianne Hammond, Jim (Edna) Bean, Marcia (Terry) Dean, and Mike Bean; and many nephews and nieces. Visitation will be held Friday, October 7, from 5-7 p.m. at Trinity Presbyterian Church in Little Rock. Funeral services will be Saturday, October 8, at 11 a.m. at Trinity. North Little Rock Funeral Home is handling the arrangements. No graveside services. Donations may be made to Arkansas Hospice or Lungevity Foundation (http://www.lungevity.org). Online obituary and guest registry at http://www.nlrfh.com.

Today we were scheduled for the 5th of 12 chemos in this round. After discussing pain meds for the pain still bothering him from the thoracotomy almost a year ago, we got a new pain medication as the old one has been pulled from the market (darvocet). Then the doctor told us that no taxol is available so she is substituting taxotere - that taxol was supposed to be available again by sometime in August.. She thought the pharm companies just wanted a more expensive drug. I read up online and it sounds to me like, since it comes from yew trees, they have a hard producing enough of it. Either way, there wasn't any. Has anyone else run into this?

Sharon - Back before my husband was diagnosed he ran into a former co-worker and friend of mine at the coffee shop. Almost didn't recognize him because he had been going through treatment for lung cancer and had lost a lot of weight. Upshot was, I got back in touch with my friend and we started having lunch occasionally when he's in town. He me that when he was diagnosed, he had his sister go with him to the doctor because she was a nurse - they told him he had 3 months to live at the outside. He thought it was kind of funny because when he was telling me, it had already been a year or two. Last time I talked with him was a couple of weeks ago and he's still going strong. Don't let anyone set limits and don't waste your time feeling guilty - my husband smoked, my father-in-law who had the same kind of cancer smoked (though never heavily) and had quit 14 years before diagnosis, my father-in-law's mother never smoked or drank a day in her life and she had it. There's a lot they don't know about what causes cancer. Obviously.

Thank you all for the kind words. So many people dealing with so many different kinds of cancer - it's almost overwhelming and I am in constant awe of how well you handle it. But one thing I have learned absolutely is that people can overcome incredible odds. Hugs and kisses:)

If I wrote a book, that would be the title - 7 Years and counting. I've been hanging around the boards since my husband was diagnosed though I don't post much. I feel like I need to share my husband's story to encourage others but I find it difficult to come here and write - like I'm opening up my soul and letting people in. Nonetheless, here is an abbreviated story of our journey with SCLC. In January of 2004, my husband got out of his truck and passed out on our front porch which is made of rough stone. Not a good place to take a fall! We put it down to low blood sugar, or possibly the flu coming on. The next morning he passed out again as we were having coffee at a coffee shop. This was the start of our journey, though we didn't know it yet. We had just gotten our youngest off to college and were starting to focus on building for retirement. The best laid plans o' mice and men . . . The diagnosis was delivered by a 68 year old doctor originally from Puerto Rico who immediately said "This is not a death sentence." We were very fortunate our first doctor said that because there were others along the way who didn't hold that view. You can look at my signature and see the treatments and tests we had so I won't go into great detail here. Through these treatment, tests, hospital stays and in between, we have dealt with side effects - dizziness, loss of appetite, falling down, seizures, confusion, memory loss and more. Thank God for our families and for the people who continually prayed for us. While I'm at it, let me thank Him for giving us a sense of humor - you wouldn't think that you could joke about having brain surgery but trust me, you can! Scott had two years of ongoing treatment, chemo, radiation, stereotactic brain surgery, regular brain surgery and guided navigator (robotics) brain surgery. The last one was especially scary because there was concern that he might come out of it partially paralyzed. Fortunately he didn't. Then we had four years of tests that were good and he gradually started regaining some of his strength. Though he was frustrated that he couldn't do the things he used to, this was the "new" normal. That's a phrase you hear a lot and at some point it sinks in and you find out what it really means. Then last year during a routine CT, hot spots showed up again. He was diagnosed with lymphoma and there was also a suspicious spot in the lung that they couldn't get to. They did chemo but the spot in the lung was still there. In September he underwent surgery for a biopsy, followed by partial lung removal when they discovered that he once again has SCLC. I almost lost him this time - and I learned how to give an IV. Once again he pulled through and is now on his second kind of chemo. Over the past 7 years, there were times when I felt that I was being carried by prayers and the universe. I am so very grateful for my family and friends. Few of them live here but they call, show up when needed and keep us in their thoughts and prayers. Certainly you discover just how short life is and how valuable every day is. You also discover just how much you can bear and how much you can do when you have no choice. It's not that I'm strong - I don't have a choice. But God does give me strength. The one who is strong is my husband. I look at what he has gone through and wonder how he has managed to do it. Our new doctor (the old one has retired) laughs at the jokes he makes and the things he says and I tell her she should be glad it's not me because I would be whining and crying. Here are some random things that I hope will be helpful to those newly diagnosed. I wish I had kept a journal (though I don't know when I would have had time). It is absolutely critical to keep a record of treatments and tests. Hospitals and clinics don't maintain that information and you will get hopelessly lost if you don't have it to refer to. It's okay to cry (trust me, I've been there on this one). Expect changes in yourself or your loved one. The treatments take a toll, some temporary and some permanent. But the basic person is the same one you have always loved or been. I would say that dealing with the medical profession and the constant waiting around teaches patience, but the truth is my husband was a very patient person before this happened and now - not so much. Do not let anyone convince you that you have x amount of time left. We had two different doctors indicate that it was hopeless. Thankfully Scott didn't believe it and chose to live. If you are a patient, get someone to advocate for you. If you are a family member, advocate for the patient. If at all possible, do not to leave your loved one alone at the hospital! Nurses will not take care of them like you do and may not realize when there's an emergency. The doctors can certainly provide guidance but it's ultimately your call on treatments. And if something doesn't feel right you need to let them know. And by the way, no question you have is stupid. There is very little support for lung cancer patients and families. Sad, but true. You can always come to lungevity.org for support, to ask questions, to rant and rave, whatever you need to do. It's like a safe house. Don't let people guilt you. Maybe you smoked, maybe you didn't. Maybe it contributed to your cancer and maybe it didn't. We all do things that are not good for our health. Some people live to 100 with bad habits while others do the right things and die young. We don't know what all causes cancer. Your focus needs to be on living day by day. You are going to hear comments but just consider the source. Patrick Swayze in his interview with Barbara Walters before his death said something like "my b***s***t meter is very sensitive." Facing the end of life as we know it affects how much time we want to waste on people who aren't contributing something positive. Faith and attitude are, in my opinion, the two most important factors in healing. It also helps to have good doctors:) Sometimes you have to just turn loose and trust the universe to take care of things. Try not to get overwhelmed. Yes, the bills still have to be paid, the lawn has to be mowed, the groceries bought, the washing done - all the things you were already doing and on top of that there has to be time for treatments and rest. I would wish that I could hug each person who is going through this as either a patient or a caregiver. I know how hard it is. A final comment before I close. When my husband was first diagnosed he said to me "Five years from now I will still be here and they will have new treatments". Half of that statement was right. But research for lung cancer is not a high priority and there are not many new treatments. "No one ever told me that grief felt so much like fear". C.S. Lewis Love to you all.

I really appreciate all for the input. Tomorrow is chemo day and I will have an opportunity to ask some things and now I have a better idea of what. Am relieved to hear that we are not the only ones who are constantly sitting around waiting like we have nothing else to do. In my next life I am going to manage some kind of medical facility - efficiently!

Appreciate the input. It's not Procrit though, it's something that starts with an N. One week they had him come in and take shots three days in a row. Now he has to come in and meet with the doctor to get a shot. I wasn't there this time or I would have asked about it but she told him that now medicare required it (new health plan going into effect?). It's just that it turns a 30 minute stop into a 2 1/2 hour appointment and he's fed up with sitting around waiting rooms:)

My husband has had to get shots for low white blood cell counts between chemos several times. It was borderline last chemo and doctor said come in and get shot Tuesday before chemo on Thursday. Any trip to the clinic is at least a 2 hour ordeal but shots have not been so bad - go in, go back and get it, leave. Today they told him he has to come in, have blood drawn, see the doctor, then get the shot. Said medicare requires it. Does anyone else have experience with this? Is it really a requirement or is this just another way to meet payroll. Don't mean to be cynical ... but I am:)

Scott never loses his hair during chemo! Maybe because he was already partially bald:) And he's already fatigued from all he's been through and the heart medication they put him on, so that won't be anything new. I just had not heard of it and hadn't had time to do any research. Thanks for the input.

My husband's pet shows possible cancer still there following his most recent chemo of 4 months. So doctor is switching him to Topotican - does anyone have any experience with this?

You need a new oncologist! The first thing our oncologist did after he told my husband that he had extensive SCLC was to say "This is not a death sentence." And our doctor kept that positive attitude. The cancer went to the brain - twice. And my husband is still alive and kicking, though now being treated for a totally different cancer. If you're stuck with that doctor, for your own sake decide that he does not get to make the decision about whether you stay or go:) He doesn't, you know.

I feel bad that I have not posted more to encourage people - particularly those who are battling SCLC. So I thought this post might give someone hope. My husband was diagnosed in January of 2004 and brain mets showed up in May of the same year. I came here quite a bit that first year. And here we are 6 years out and still going strong. Yeah, life is different now. But some doctors didn't give him much chance at all back in 2004. Fortunately, we had a wonderful elderly oncologist who was a bundle of energy with a positive outlook. And my husband just refused to believe that this was it - he told me the first year that he would still be here five years later. Wish I had some magic formula to tell you why and what to do. I think the single biggest reason is his state of mind - he believes he is going to beat this and he always has. So when you think it's hopeless, don't give up! Trust me, I've been there. God bless you all.

There is a tendency for doctors and people in general to automatically equate brain lesions or tumors with "the end is near". Look at my husband's profile - he had 5 or 6 lesions show up back in 2004 not long after he was diagnosed. He had whole brain radiation, gamma ray and two brain surgeries - the last one almost three years ago. No more tumors at this point and his oncologist has said he is in remission. I definitely think it's worth trying. He said the radiation was not near as bad as chemo - just made him bone tired. Hang in there. It's not over until God says it's over.

Thank you all. He said this morning that "sometimes I think there's something wrong with me" and we both had a good laugh. Once the wedding is over, I think I'll schedule both of us for a physicians visit just to make sure. It's good to know that he's not the only one who has this problem and that I'm not the only one who worries when things are going well.

I have not been on here in quite a while. The last year has been tough in many ways but at least my husband has not had to have anymore treatment. I guess it's a good news/bad news thing. On the bright side, they have been doing MRI's every 3 months and the one spot that shows up is growing very, very slowly. Then the oncologist did two pets 6 months apart, with a CT in between, and nothing showed up, so he told us not to come back for 6 months and used the R word. He was worried about the loss of 6-8 pounds in 6 months, but the tests reassured him. However, it seems to me that my husband is weaker and still losing weight gradually. Sleeps more, has more trouble getting things done. Considering all he's been through, we are happy that he can walk, talk, drive, work puzzles and putter around. But I still worry. Apparently nothing bad has showed up in his blood tests at the oncologist. We have gone only to cancer doctors for the last four years except when he has a sinus infection. Then he goes to a walk in clinic. I guess I'm wondering if I should find a general practitioner and have him running tests on him as well. I know my husband will resist the idea of more doctors. And am also wondering if anyone else has had a similar experience and, if so, what you did about it. I have a daughter getting married in two weeks (that's another of those good news/bad news things - love the fiance, hate the wedding planning)and don't have much time to read or do research right now, so any input is appreciated. I am still angry that lung cancer research is not a higher priority - no one deserves to have to go through these things. Had to get that off my chest once again:) God bless to all.

Can't remember how to do a stickey, but I try to post this once every 6 - 12 months as we constantly have new people joining the boards. Many of us are so worn out just dealing with taking care of those who have this awful disease and trying to pay the bills that we don't have a lot of time or energy left over to advocate for lung cancer research. Here's one small thing you can do - go to this site and sign the petition asking the President & Congress to make lung cancer research a priority and raise the 5 year survival rate to 50%. http://www.lungcanceralliance.org/invol ... tition.php

It's my understanding they don't like to use the stereotactic or gamma knife if there are several brain tumors. They would start with WBR, then possibly do it if one or two were still growing (as in my husband's case). Looks like they maybe would have done radiation to the tumor in the lung, though. Did they discuss that? Have you considered getting a second opinion? Our oncologist went to bat when one doctor didn't want to treat and got us an appointment with another one. Having said all that, I think it's also important to remember that any of us could hit by a car or have a plane drop on us tomorrow. We can't see the really big picture and understand why these things happen. So while pursuing every option, do treasure each day along the way. God be with you.

I know how hard this is - please hang in there. I don't know what your father's odds are but I can tell you that the doctors are amazed at my husbands case - and I think you'll find other people who say the same thing. Can it happen? Absolutely! My husband has refused to give in to this, just takes the attitude that he's going to beat it. Lung, adrenal, mets to the brain. Chemo, radiation, stereotactic brain surgery, two brain surgeries under the knife. He's still walking and talking, joking and working puzzles. And we're thankful for every single day. It could change tomorrow and he could lose the battle. None of us know what is going to happen - to our loved ones or ourselves - so all we can do is be grateful for each day we have. Maybe the one thing this awful disease teaches us is how to appreciate life. That doesn't mean we don't sometimes despair and think how unfair it is so it's okay to come here and vent as well. Wish I knew all the answers.

The survival rate for lung cancer has not increased significantly yet the funding per person is still much, much lower than other types of cancer or AIDS. 60% of the people diagnosed today either never smoked or quit years ago but the only thing the governments seem to want to spend money on is smoking cessation. If you want funding for lung cancer research, please go to the Activism board and sign the petition - it's about the 6th or 7th message down. Or go directly to: http://www.lungcanceralliance.org/

I received a reply but because of my husband's deteriorating condition am just now getting around to posting it. They did respond promptly and perhaps this will help. As the only national organization dedicated solely to advocating on behalf of those living with lung cancer and those at risk for the disease, we see first hand how petitions, letter writing campaigns, publicity in local newspapers can make a difference. Just in the past year, through our efforts and the efforts of our advocates across the country, lung cancer and Lung Cancer Alliance has received more attention from public health leaders and public policy leaders here in Washington DC than ever before. We have launched many public awareness initiatives—a national ad campaign and a public service announcement that has been endorsed by the Ad Council and was played for a month on the Jumbotron in Times Square. We are working with Members of Congress to add line items for lung cancer research and early detection into appropriations bills. The petitions will be presented to the Members during our advocacy training session this spring. The more signed petitions, the better! Politicians need to see that their constituencies want lung cancer to be taken seriously and made a priority.

I have emailed them to ask what, if any, impact this petition has had on funding. I'll share the answer if and when it arrives. Meantime, there is another site I will post later - have to go back and find it. Thanks for the input.