Beanie

This is fun ... I haven't posted in awhile (it's been a bad year) but I do visit and read a few times every week. When I was in grade school my brother (who is one year older) gave me a nickname that he taunted me with constantly!!! The nickname was "Beanie Boo" and I HATED IT (although I'm not sure why I hated it so). Anyway, my family has always referred to me since as Beanie for fun (at least they dropped the Boo part). I guess I finally got over it in my mid thirties and now being in my early 40's I often use it a username online since my real name (Brenda) and all the other usernames I try are taken! Brenda a.k.a. Beanie (without the Boo)

More bad news...... Dana Reeve Dies of Lung Cancer Tuesday, March 07, 2006 PHOTOS Click image to enlarge SHORT HILLS, N.J. — Dana Reeve, who fought for better treatments and possible cures for paralysis through the Christopher Reeve Foundation, named for her late actor-husband, has died, the foundation said. She was 44. Reeve died late Monday of lung cancer, said Kathy Lewis, President and CEO of the foundation. "On behalf of the entire Board of Directors and staff of the Christopher Reeve Foundation, we are extremely saddened by the death of Dana Reeve, whose grace and courage under the most difficult of circumstances was a source of comfort and inspiration to all of us," Lewis said in a statement.

Christopher, I am so sorry for your loss, I too lost my Dad 11 days ago. It is very hard to be here in this section of the message board - I want to be one of the ones sharing encouragement and hope on how my loved one is beating the odds.....but I can't. I am so glad that your father didn't have an extended period of suffering and that he was surrounded by those who loved him when he passed. We must find a cure for this disease - it is so devastating, so cruel, and so scary. Thank you for your prayers as well, we all need them. This is so hard.......I don't want to let go---not ready Take care Christopher, I know what you are going through. My thoughts are with you and everyone suffering because of this miserable disease. Brenda

(((((Erin))))) I am so sorry for loss! I know what you are going through, I lost my Dad 11 days ago and I feel like a have an elephant sitting on me most of the time. I do OK trying to stay busy and not allowing myself to think very much ("don't think, don't think" I have to tell myself, especially at night). You are sooo blessed to have had such a wonderful woman as a mother...... Try to keep her memory alive and honor her by loving those babies of yours with every ounce of your being ------ loving and holding my five year old daughter gives me great comfort, even more so now!! She makes my day, every day and always has. I only hope that my daughter and I can have as great a relationship as you and your mother have had ---- what a great gift you gave her with your love, admiration, and support!!! I am sure no mother could be more proud than she must have been of you, and I hope that gives you strength as you go forward to bring a new life into the world. Brenda

Thank you, thank you!! (((((all of you)))))-- You had the most wonderful things to say in response to the news of my dad's passing and the manner of his death. I have shared your responses with my family, especially Jane, my stepmom, and we have all been very touched and comforted by your words - you seem to know the right things to say and how to say them!!! My Dad was a warrier, a fighter, a perfectionist, a doer...., a man who could always conquer just about any problem or issue he ever faced!! I was soooooo proud to have him be my Dad. He met his match in this awful disease but he also did what he had to do in the end for the type of person he was - he took back control and ended things on his terms. My Dad was an incredible man and we are blessed to have had him and his influence in our lives. We did our best to celebrate his life and I think he would be proud - a week long gathering or family and friends with many late nights of sharing stories and memories of Dad's life!! It was so great to hear things about him from people that were life long friends. I am struggling with exhaustion - emotional and physical, but will be ok. Jane is doing fantastic but I know she will come crashing down when the last family member leaves. We are going to try to keep her busy and will be there to support her through what I know will be a very difficult journey.

I don't know how to say this ...... My wonderful, tough, awesome Dad couldn't stand the pain anymore and he chose to end his suffering this morning. We are all having a very difficult time dealing with this but we are trying to focus on the fact that the suffering is over and based on the circumstances, that he had made peace with his decision. He had also taken measures to ensure that he was not found by his wife - the authorities were there first. Please pray for our family and for my Dad. I have asked God to welcome him into heaven, to take care of him, and to forgive him for his actions. Please don't be angry or lose hope for yourselves or your loved ones.......this is most horrific disease!!! Please keep the strength and hope going!! Brenda

I found this on the ALCASE website - thought you all might find it interesting.... FOR IMMEDIATE RELEASE February 2, 2006 Contact: 202-225-3026 Gail Gitcho/Press Secretary **MEDIA ADVISORY*** Shaw to Host Lung Cancer Media Roundtable Washington, D.C. – Florida Congressman Clay Shaw (R-FL) invites health care reporters to a media round table in his office on Tuesday, February 7 at 4:00pm to discuss the first National Report Card on Lung Cancer. Congressman Shaw, a lung cancer survivor, will be joined by Laurie Fenton, President of the Lung Cancer Alliance, the leading lung cancer advocacy organization headquartered in Washington, DC. "Lung cancer was the number one cancer killer when Congress passed the National Cancer Act in 1971 and it still is. Lung cancer will kill three times as many men this year as prostate cancer and nearly twice as many women as breast cancer,” Shaw said. "There has been a troubling increase in young women in their thirties and forties who never smoked now being diagnosed and over hundred thousand boomers will get lung cancer this year and that number will grown as the boomers age,” Shaw said. "Unfortunately the mindset of some in the public health community has been that lung cancer is a "preventable" disease that warrants only tobacco cessation funding. Obviously when over 60% of new lung cancer cases are being diagnosed in men and women who never smoked or who quit smoking, many of them decades ago, that approach alone is not working." "We must address the entire disease as a public health priority and put much more effort on earlier detection and better treatments," he said. Details for the press event are as follows: 1236 Longworth House Office Building at 4:00pm February 7, 2006. For details or inquiries please contact Gail Gitcho at 202-225-3026.

I'm coming too!!! Hope you all are still there - have been doing solo red wine therapy nightly and would LOVE some uplifting company!! You are all so wonderful and soooooo brave!!! You really made my day today when I needed it most - THANKS!! and here's to all of you and all the beautiful souls watching on - you're amazing!!

Things aren't going so good - Dad came home from the hospital on Wednesday and is so miserable from excruciating pain! - wanting to do himself in........ may call hospice (don't know). WHY CAN'T THEY CONTROL THE PAIN??? I think that maybe Dad hasn't been clear enough about his level of pain (he is a very big guy - still weighs about 230 after 2 years being dx with stage iv LC). jane is calling the Doc now to talk to them about more meds - already on considerable morphine. The insurance case worker is working on getting info on hospice and at least getting a hospital bed brought into the house. We are confused - the Docs have told him that the cancer mets in the bones don't kill you and he hasn't had any mets to organs -- a week ago they said he thinks he can get another of good couple of years with continued chemo. THEN WHY SO MUCH PAIN - the pain is killing him (at least his spirit!!!) The doc also told him that 30% of the pain was probably from the cancer and 70% from the blood clot. I don't know what to do or say - feel so helpless. Jane said, maybe you can talk to your dad and convince him that he shouldn't shoot himself - but he keeps saying that you don't know my pain, my life is over! The case worker said maybe he needed to be readmitted to the hospital - he said no way!!If they can just get the pain under control then he can make a rationale decision, but we also have to respect his wishes, right? We don't want him to suffer. Thanks for letting me vent and question - my sister and I talk everyday but we run out of answers and hope etc.

Thanks for the info and update - I did sign the petition. I plan to donate both to this site (LCSC) as well as other causes specifically focused on LC.

Thanks Rich, you sure are wealth of information - I see your responses all over this message board. I have already checked out the link and will contact them today!! Thnaks again

Hi all! My Dad's insurance has very little to no perscription drug coverage. He is in the hospital and may be released soon but has to continue taking the low wieght heparin by injection at home (for large blood clot in thigh/groin area). Doc is prescribing ARIXTRA 10mg sq. Cost is about $110 per day. The case manager has worked out that he could go to the Docs office every day to recieve the shot and the insurance will pay - on the weekends he would have to go to the hospital to recieve the covered shot. He dosen't understand why it isn't treated like Chemo etc. and why they would make him go to the Doc every day to have it covered (very depressed) Looking for any leads for getting the presription filled at good price so that on the weekends he could do the injections himself at home. (Pain really too great for easy daily travel) Anyone know how to contact the drug companies or a website for good prices or Canada sites etc. Dad is 63 - too young for medicare scrips. Has minimal SS income but some income from investments. Thanks so much - I feel like all I do is ask for help and have had very little to offer to you all so far -- hope to be able to share back. Thanks. Brenda

That is awesome - keep it going, you give us all hope!!!!!!

Thanks Dave, I'll pass that info along to my Dad & Jane (Can't wait to hear how the insurance company responds - they are still fighting about last years PET scan). I've heard about the filter in the vein and "clot Busting" medications (very dangerous) as well - they haven't said anything yet about those procedures - I guess that would only come up if the clot moved?? My parents brought some of my dad's perscriptions with to the hospital this time to supplement for pain if they get the standard.. "You are not due for more pain meds for another 3 hours, blah, blah, blah..." as if he wants to be a morphine addict or something - go figure! Thanks again, Brenda

Hi Heather, I'm new as of last week but my Dad was diagnosed (stage iv) almost two years ago. Please keep us updated on your husband. I have been reading the message board here off and on for a year but just started participating. It was helpful to read and it is helpful to vent/ask questions of others who know what you are going through. Brenda