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Beanie

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Posts posted by Beanie

  1. 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)

  2. 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.

  3. 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 :cry::cry:

    Take care Christopher, I know what you are going through. My thoughts are with you and everyone suffering because of this miserable disease.

    Brenda

  4. (((((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

  5. 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.

  6. 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. :cry: 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

  7. 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.

  8. 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!!

  9. 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! :cry: 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.

  10. 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

  11. 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

  12. 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

  13. I first posted about two weeks ago wondering about zometa increasing bone pain, it turns out that the sharp increase in Dad's leg pain had been caused by a large blood clot. The Doc had tried to admit Dad to the hospital on the 12th but Dad refused, mostly because the last time he was admitted, the hospital did a very poor job at controlling his pain. (Also, they have bad TV). His leg pain continued with severe swelling in his upper leg/groin through the 19th when they did an ultrasound & found a large blood clot in the groin area.

    Admitted to hospital and started on Heparin (had been on coumadin at home). 1-23 His swelling hasn't subsided much, pain still bad, and he is currently waiting to do a CT scan to see if the clot has moved, etc. Doc's are saying he will need to be on the low-weight heparin when he does return home (home injections everyday) but the insurance company may need to be sold on the matter because the Heparin for home costs $100-$150 per DAY. (WHAT?) Why would the insurance company have anything to say in the matter??? The low cost coumadin obviously didn't work because he developed a large blood clot while on it. Not sure what they will do if the clot has moved toward the heart/lungs??

    Interested in hearing any suggestions/insight on the medication and recovery from this type of clot.

    Also, beware of sudden increase of pain in leg or occasionaly, arm. The pain increased way before (7-10 days)the swelling started. I have read that blood clots are the second leading cause of death for cancer patients (scary!!)

    Brenda

  14. Cheryl, my heart breaks for you and your family; I have read your posting several times before responding and had to leave the site because I started crying (was at work). The tragegy of this disease is so horrific. I pray for you and your husband - for your peace and no more suffering.

    Brenda

  15. Lynda, my Dad was also diagnosed with stage iv NSCLC with mets to the neck and spine. That was almost two years ago!! :D He's having some difficulty right now but hope to get past that soon.

    My Dad has been treated by both radiation and chemo several times since the first diagnosis in march 04. He has had some really good feeling times throughout that time with some weak and pain filled times too. One of his first Docs (Dad and Jane called her "Dr. Death") didn't think he would survive the first summer, but he did great. They later came to really like that Doc (Dad appreciates the no BS type of people) and were saddened when she relocated this year from SW florida.

    My grandfather had lung cancer and survived for decades after - he of course was diagnosed at a much earlier stage but he was "cured".

    Hope this helps - I am new at posting here but have been reading and following leads and info for quite some time -- it has been really helpful!!

  16. Amie, was your Mother's stroke from the bloodthinners? That is scary. I haven't checked back on Dad since this morning so I'm not sure if the Docs are still saying wait until tomorrow. I probably would have heard if they were off to the hospital. I have my fingers crossed and will pray tonight for a good Doc visit tomorrow (that would mean chemo accomplished and some resolution on the leg -- I would think they would want to see where the clot is, how big, etc...through ultrasound). Also, I read that upper leg swelling (like Dad's with swelling also into the groin area) would say that he is a greater risk for pulminary embolism if anything were to break free than if the swelling was in the lower leg.

    I worry that they don't see the situation as an "emergency" just because he is a stage iv cancer patient.

  17. Yesterday, Dad's leg (that has been causing him so much pain in the last two weeks after the chemo/zometa) is now swelling. The nurse told Jane to increase the coumadin (has been on since pin placed in last fall) and elevate the leg, I guess they suspect a clot (I'm surprised the Doc didn't hospitalize???). The swelling has come down some and Jane is waiting for the nurse to call shortly. Dad has an appointment for tomorrow AM to try & do chemo again since he couldn't last week due to pain.

    His mobility is down to occasional bathroom visits since the leg pain has elevated - this worries me.

    I was reading throughout the message boards yesterday and had to leave :cry: - many have been lost recently. My prayers are with their families.

    My five year old daughter said the most beautiful prayer for her grandpa last night.. went something like this "god, I love my grandpa Jerry so, so much, please make his pain better so he doesn't have to hurt anymore" .... that is my prayer too!

    Brenda

  18. Thank you all sooo much for your kind words, info, and welcome. Good news - Jane did get on-line here and registered but had difficulty getting the system to recognize her username and password. I will help get her in - she will be Hoskie!! Please be looking for her entries. I will give an update for Dad in another section now - probably in General or Family/Caregivers.

    Thanks,

    Brenda

  19. Hi everyone! This is my first time posting but I’ve been a reading visitor for over a year now. My Dad, “Mr. Invincible”, was diagnosed with stage IV NSCLC almost two years ago (March 04, age 60). He’s an amazingly strong man, tough as nails, self-made businessman, who has always been able to conquer anything – thus, the “Mr. Invincible” persona, especially in his children’s eyes. I think the family has been through the shock, disbelief, and denial phases several times in the last two years because of the kind of man we know him to be, and he continues to amaze with his perseverance through this nightmare.

    The pain is the worst, what a cruel disease! My Dad (Jerry) and my step mom (Jane) live in SW Florida while the rest of the family is scattered around FL & GA. Unfortunately, Dad and Jane have been through most of this on their own. Jane is a wonderful person who has always been a great step mom, and we are extremely grateful for having her in our family for over 30 years now. I wish I could help them more and have tried to do a lot of research and reading on the internet for them. I have told Jane about this site and have encouraged her to visit and join because I think you all could really help give her a sense of not being alone and be a source for information and sharing. I hope she will.

    My Dad has done extremely well with his treatments responding even when certain Docs didn’t think he would and he has never lost weight. The first summer (2004), they were able to go to their summer home in the mountains of NC and continue treatment. That summer home, by the way, was on the side of mountain that was historically an apple orchard/farm that was heavily treated with arsenic and now the soil is full of arsenic. We always thought that was suspect for my Dad’s current condition but who knows (the man that owned that house before my Dad also had lung cancer too, hmm).

    The current situation is concerning. My Dad’s pain has been increasing and spiked up tremendously after a recent treatment of Zometa and Chemo. This was about two weeks ago. Last summer/fall Dad had some cancer in the femur and received radiation and had a pin placed along the bone. In mid November, they started Chemo again because the Doc said it was getting active again (rib). He had a bad reaction to a new blend of chemo and was hospitalized for a few days. In December, they went back to the old chemo drugs and started again. I think he has had only one treatment since which brings us to now. He couldn’t even go to treatment last week because he was in so much pain and couldn’t sit there – they feared a leg fracture but that is not the case. We are wondering about the Zometa and the fact that in small percentages of individuals – people actually experienced an increase in bone pain vs. a decrease. I have had difficulty finding any detailed info on those experiences and was wondering if any of you might have any similar situations? We are looking for answers and hope – Dad seems to be losing some of that lately when the pain is so intense (talking about home hospice, Oregon, etc.). His morphine usage is up quite a bit and he has had to use some of the oxycotin again in the past week (was on that in the beginning when first diagnosed). I wish I had more details but we live in different states and I have tried to lay out what I remember.

    Thank you all for being here! Sorry so long.

    Brenda

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