mjb

Thank you! I haven't been able to find any support groups here, but this site has some wonderful suggestions.

Main site: http://www.lungcanceralliance.org/ Petition: http://www.lungcanceralliance.org/invol ... tition.php I posted a year or so ago but tonight I was at a site called redtoenail.org, a blog started by a doctor who was diagnosed with lung cancer that had spread to several other locations. I was reading one member's message about the lack of funding for lung cancer and got sent to the Alcase site again. I signed this petition a long time ago, but we need to get as many people as possible to petition the government to fund lung cancer research! Quoting the site: "Over 60% of new lung cancers are diagnosed in people who never smoked or who managed to quit smoking even decades ago. Our initiatives aim to make fighting lung cancer a priority for more people and change public perceptions about the disease." Whether you do or don't smoke, no one should have to go through what lung cancer patients do with such slim odds of survival. Please sign the petition. And if you want to read someone else's railing on the subject, go to: http://elevitt.redtoenail.org/#a8 He points out that prostate and breast cancer now have a 98% survival rate because someone took action and got funding. I don't want to see any more people go through this. I don't want to worry that my children will have to go through this some day. Please sign the petition. And refer people on the other boards to this. We all get bogged down in just trying to survive day by day and in worrying about ourselves or our loved ones. Here's a simple step that can make a difference. Thanks for reading:)

Back again. And thanks again. I'm better now - just had a few bad days. Had to laugh about the 'get a cut and style.' Earlier this year I decided I could no longer deal with long, all one length, hair so I went and got it cut off. Since then, I've been back twice trying to get something I can style - it's terrible! And I hate to complain about it because he's been through chemo, radiation, WBR, stereotactic surgery & brain surgery. What's a bad hairdo compared to that. Per the suggestions, yes we have gotten ss disability. With a 10K deductible, it covers that and not too much more. I will survive - God hasn't let me starve yet. Just worry about all the money going out and not much coming in. I have hated to call my church for help because I haven't been there much since he was diagnosed. It's my church, not his, and I prefer to send Sunday mornings with him. But I'll talk to them. This last two years has taught me to appreciate every single day - even the bad ones. We love deeper, we appreciate each other more and the trivial things really are trivial (except for the haircut thing). If anyone had told me 2 years ago that I could crack jokes about a brain tumor, I would have thought they were crazy. The planning I do have trouble with. I have always planned my work and done yearly plans on a personal level. Now my days are dictated by all the things that have to be done, which includes running anywhere he needs or wants to go. Trying to do a business plan seems pointless - I can't see far enough ahead to know if I'll even be able to get on the phone on a given day. And my business requires that I be mentally tough and take a lot of rejection. Right now, some days I can and some days I can't. But it's okay - I will get some things going and we'll get by. Sorry, I've rambled on. I just lost it for a few days and needed to know there were other people who had a clue what this like. I get tired of being told how strong I am. Anybody else been there? Thanks for the support.

Thank you all. Believe it or not, just having people reply made me feel better. In the past 5-6 weeks he has gotten weaker and suffered from dizzy spells, so I don't like to leave him alone for long. Between worrying about him and worrying about money, I just seemed to slip into a bout of depression. We have no family nearby and one or two people I thought I could count on are not the friends I thought they were. (And yes, I actually did ask them for specific help.) However, after reading the messages I have taken some small steps and am meeting an acquaintance who has been through something similar for a drink. And my former boss for lunch. Need to look at this as an opportunity to make some new friends and not spend time thinking about the others. Now, if I can just get focused enough to concentrate on working from home, that will take care of the money problem. Thanks again - my mood is somewhat lighter today. Love to all.

Does anyone else here ever feel like they are living on a different planet from the rest of the world? At this point I have virtually no social activities. I am grateful for every day I have and I want to spend every minute I can with my husband but there are times when I feel very removed from the rest of the world. How do you make small talk when the only thing you can think of is your loved one may be gone soon. How do you prepare? There are tons of support groups for people with prostate, pancreatic or breast cancer, but very little for those with lung cancer and even fewer, apparently, for those who are taking care of someone with lung cancer. If I do go off by myself for awhile, I find myself crying - can't do that at home because he would worry about me. I know I need an attitude adjustment but there is so much I need to do. Earn a living (from home), take care of paperwork, fix meals, take him places, clean house. My yard is a mess, repairs to the house have to be put off, finances are tight, my hair won't even behave! How does everyone cope?

You have all lifted me up! I got something from every post here and it lightened my mood considerably. This was the only place I could have gone to express my thoughts and not have people think I'm losing it. I know other people really don't know what we're going through, but every one of you does. And I know there will be other days when I go off alone to cry but I will carry you with me and that will make it more bearable. I pray that God blesses each of you and helps you beat this monster. Love to all.

The kids are gone - off to pursue their dreams. Now we’ll have some fun! Collapse, an ambulance, a diagnosis. Small cell lung cancer - it runs in his family. No fair! We’re only in our early 50’s - we’re supposed to enjoy this phase of our life - travel, spend time together, get ready for the day we’ll be grandparents. A new appreciation for every single day God blesses us. More happiness, more sadness than I’ve ever known. All the things I love about him - what if I lose him? How do I survive? Ups, downs, I never did like roller coasters. I still don’t. But I’m strong - everyone tells me so. I’m doing great, they just don’t know how I handle it. At least that’s what they say when they run into me. Funny, I thought I had more friends. But if they were really friends, wouldn’t they call ever so often and see how I’m doing? I’m not really that strong, you know. I’ve turned it over to God, but then I turn around and ask Him to give us a few more years. I smile and say all the right things and keep a positive attitude. Then I go off by myself and cry. Then I fix my face up so he won’t know. Does God think I need more character? Trust me, I have enough, I don’t want any more. What I do want is: More research to improve lung cancer treatment. For my husband to live to see his grandchildren and teach them how to play baseball, how to hunt, how to tell if the construction of a house is good. For my husband to be able to drive again. A normal life that doesn’t revolve around doctor’s visits and MRI’s and Petscans. To grow old together.

Thank you all for the input and prayers. We'll find out more next week. This tumor is very close to the control center of the brain which is why they decided to try the stereotactic radiosurgery the first time around. Obviously we hope they don't have to operate but the tumor or swelling is affecting his ability to do things. Will update when I know more and have a minute to myself. Prayers to all.

Has anyone had stereotactic brain surgery, then had to have regular surgery? My husband's brain mets were treated first with WBR, but one continued growing. Then they did Stereotactic surgery on it. First MRI showed it shrinking and swelling gone. Then dizziness started and headaches. 2 months after the MRI, they did another one and swelling has returned and they think possibly the tumor is growing. Will compare scans and talk with neurologist, but if it is, next step is surgery. Any input on this? Thanks.

Seldom have time to get on here and read, let alone post. Scott had a seizure March 7th, so he is not allowed to drive for a period of time. Then the first part of April he started having dizzy spells - just occasionally and only after getting out of the car after a short trip. Last week his left hand went numb and after a couple of hours, the movement came back. It's about 98-99% ok now. But I worry everytime he gets out of the car, walks outside, etc., that he will get dizzy and fall. I've been with him every time except the time his hand got numb - he was with a friend playing pool. I'm working from home, running him where he needs to go, and not doing much else - afraid to leave him alone and there is no one else here. I think I read that others have had dizzy spells after radiation or stereotactic surgery but I don't have time to search - he's usually three feet away. Any input? Doctors seem to think that may be the cause, though they have moved up the next MRI. Anything I hsould watch for? Prayers to everyone.

I promised I would come back and post after my husband's radiosurgery. Last Wednesday was a loooong day, but it went without a hitch. He had a headache when they took off the screws, which he took 3 ibuprofin for (doctor gave them to him), then he went home and slept. No side effects to date except that he is on steroids again and that makes him eat like a horse. Also on anti-seizure medication for 6 weeks. Knock on wood, he's feeling pretty good. Next MRI in Jan/Feb time frame. Many thanks for the prayers - trust me when I say I wouldn't have made it without them. It was one of those weeks when all the little things that can go wrong did - with a vengeance. I am almost recovered:) Thanks again. MJB

Thank you all! The last couple of days have been harder than usual. Appreciate the prayers and good words:) Will post sometime after the surgery and let you know how it went.

I've been going at a dead run for a month now (20 people for Thanksgiving at a house that has been neglected). Wanted to drop in and say that my husband is having the radiosurgery next Wednesday. Just finished radiation for adrenal gland, did MRI. Good news is 5 tumors have disappeared. Bad news is one is larger. So they will zap it next Wednesday and, God willing, that will take care of the last one in the brain. I haven't had time to get on and even look for the last month but hope to be back after Christmas reading and (occasionally) posting. Prayers deeply appreciated - God bless you all. MJB

Katie - Sorry you have to be here but since you are, there are hundreds of kind people who will help. One of the best things you can do is read these boards and look for messages similar to what you're asking about. And continue doing that as new questions come up. You can also search them by keyword. And people will respond - you'll be hearing from others. There are a couple of oncologists on here as well who often make comments. It's also a great place to come when you need to vent! You can say anything here. I can't answer your question because we're dealing with a different type, but good luck to you and your father and God Bless. MJB

Don - My mom died 24 years ago next month. I was 29 at the time and despite the fact that I had a son, a husband, a father and two siblings, I thought life as I knew it was over. I do not to this day know how the people who cared about me lived with me for the year that followed. Holiday season is the worst - particularly the first few years. I don't have a lot of words of wisdom. Every time I hear of someone's mother passing away, it breaks my heart. One of my daughter's childhood friends called me two weeks ago to tell me that her mom had died - she was 45. The girl said "I keep thinking I'll have to call Mom and tell her something. Then I realize I can't." Boy do I know that feeling. One of the things I do remember doing at some point was looking at my mother's life and realizing all she had been through. Her mom died when she was 6, she lost her father and a daughter within 3 months of each other, her older brother before I was born, her younger (favorite) brother when I was a teenager and her twin brother when I was about 20. She had taken care of my partially paralyzed father for the last 14 years of her life. I think maybe it finally clicked that the best way I could honor her was to be a better person and enjoy my life. As a mother myself now, I know that my children love me. Even when they were shouting "I hate you" I knew it. Don't doubt that your mom knew. You will get through this.

Wow - now I think my brain has been affected. I swear I posted a reply and it disappeared! Thanks for the link - I went and read it. Since 1999 when it was posted, AIDS funding has apx. doubled each year. Quoting from the Kaiser Foundation www.kff.org More than half (59%) of the $18.5 billion of funding for FY 2004 was for care activities, 9% for cash and housing assistance, 16% for research, 5% for prevention, and 10% for international. My calculator doesn't go that high, but 15% (research 16%) of 18.5 billion should be about 2.7 billion. Can't find the breakdown for lung cancer except that it said $1740 per death and apx. 160,000 deaths and if my math is right (fingers crossed) that's only 10% as much. AIDS is a horrific disease. We had a lady at our church this morning from Africa and she lost several family members to it. Research for the cure can cross lines and help cancer patients. The same is true if equal funding were given to lung cancer research. As I said in the post that I apparently sent into cyberspace, some doctors have been quoted as saying lung cancer research is the "stepchild". I'm angry, I'm sad and I'm scared to death I will lose my husband before they make enough advances. I know you all have these fears. I would like to think we can make a difference. Bear with me if at times I don't make sense. And God bless everyone who is struggling with this. I'll shut up now:)

I still have your poem that I read when I first came on this board. Think I will add this to it. Both of my (college age) children have a strong leaning to writing. I'm going to suggest they read yours. Thank you. MJB

I spent the last 6 months coming on and looking at specific issues having to do with my husband's treatment & symptoms. This week I started looking for a support group and discovered what a neglected group we are! Did you know that Lung cancer kills more Americans each year than breast, prostate and colorectal cancers combined? Federal government spending on cancer research in 2003: Breast Cancer $13,649 per cancer death Prostate Cancer $10,560 per cancer death Colorectal Cancer $4,581 per cancer death Lung Cancer $1,740 per cancer death These statistics are via www.lungevity.org and they quote the National Cancer Institute and Couldn't find the statistics on HIV, though I'm sure they are out there but did read that government funding was 18.5 billion in 2003. I had a sister with breast cancer and I don't begrudge money spent on any of these because it may help with lung cancer. But. We need to advocate for our families and friends - no one deserves to go through this, smoker or not, and 50% or non smokers when diagnosed. There are two posts under LC Activism on our board. One says Let's Do It! and the other says Sign the Petition! They give websites where you can go right now and either send an email or write a letter to state and federal officials. I urge everyone to do that. When I saw all the support groups for other kinds of cancer and AIDS, it both saddened and angered me that there was so little out there for us. Make a difference. And tell others when you're talking to them on the boards. Thanks for reading my vent:) MJB

Arkansas is covered. Just saw this post yesterday and today I sent emails to Mark Pryor, Vic Snyder, Blanche Lincoln and President Bush. Am also going to recommend people on some of the other boards take a look see over here in case they'd like to participate. If they're like me, they've been too busy reading about symptoms, trials, tests, what do I do now posts to think about checking this category. MJB

Thanks to you both - I have started looking at it. I also went to ALCASE and after I did I posted under activism. There is a petition online that can be signed asking for more funding for lung research. Needless to say, I signed it. I also posted the lunk under the activism topic. It's http://www.alcase.org/advocacy/sign_the_petition.html May y'all already know about the petition, but I didn't and I'd love to see everyone on this board sign it! Thanks again. MJB

I had asked about support groups under the caregiver category and tnmynatt responded with a referral to a couple of groups. One of them was ALCASE and in looking over their sight, I found a petition to urge more funding for lung cancer research. I signed and submitted it. I urge everyone on this board to go the location listed below and sign the petition. If this has been posted before, I apologize, but I've been on here since March and haven't noticed it. If you think it needs to be posted in other groups (and it's not against the rules), let's do it. I'm very supportive of breast cancer research (my sister had breast cancer) and I know that any kind of cancer research can benefit other cancer groups, but I'm appalled at the lack of support for lung cancer patients and their families. And the guilt trip for people who have it - like they don't have enough to deal with! Url is below. http://www.alcase.org/advocacy/sign_the_petition.html MJB

I'm wondering if anyone has found (or for that matter, had time to look for) local support groups for caregivers? It is so wonderful to come on to this board and hear the encouraging words, the prayers, the advice, the sharing of joys and sorrows. Wish we could all get together in one place and talk and hug and laugh and cry! I mean face to face:) I visited the local lung cancer association right after Scott was diagnosed and they said there was a meeting (in a not very good part of town) for lung cancer patients and their families. But to call first and make sure they were having it. Scott isn't interested in going and I'm not sure. Would like to find a group for the family members where I could meet others who are going through the same types of things - they reallly understand. Has anyone had any experiences with a group like that? Or has anyone tried to start one? I'm sure there's one around here someplace - just need to make it a priority to find it. So far I"ve managed okay, but the last few weeks I've realized that it's getting a lot harder to keep my emotions under control and my outlook positive. I know y'all understand that. MJB

Thanks for the article. My husband's father and grandmother both died of SCLC and my husband has been battling it for 9 months. Our oncologist told us it was hereditary. If they can identify the gene, perhaps our children will be able to get tested at an early age. I'll be keeping on eye on this.

twodog (and to the others who replied - thanks for the first hand account. I made soup one night and just set it in front of my husband who gave me one of "those" looks but ate it. Next day he complained of an upset stomach and said it was because "I made him eat." So, I only fix something if he feels like he might can eat and it has gotten a little better. Also, I guess if you're used to be really active, doing hard physical work, and then suddenly you're lying around all day that maybe the appetite slacks off as well. Anyway, I appreciate the input. And my best to everyone who is delaing with this as either a patient or a caregiver. MJB

Thanks Don. He's taking his Boost juice (hates ensure) and vitamins. Just saw someone else had recommended an herb called Astragalus and went and read up on it. Think I will get some of that as well. It's the first time since all this started that he hasn't had an appetite.