phylsgirl

I don't know what to say...I'm so sorry. I have followed you and Bill's journey on these bbs although I haven't posted in awhile. Barb, my thoughts and prayers are with you and your family at this time.

I am so sorry to read this. I wasn't sure who Sandra was until I saw her picture in her obituary link. I am so so sorry to read this. Sandra posted some encouraging word to me when my mom was battling this disease. She will be missing here. My thoughts and prayer to her family, especially her children at this time. God speed Sandra... I am so tired of this disease and its effects on peoples lives, health and their loved ones. When will it end?

Unfortunately, I had a feeling this news was going to come, but I am glad I got to know Carole through these boards-she did it her way and showed a way for others too; an inspiration indeed. God Bless you Carole on your journey and my thoughts and prayers to her family.

Carole, Thank goodness you were at the clinic when all of this occurred and things did work themselves out. I know I said this before but Your attitude and wisdom are just awe-inspiring. I hope your Inauguration Party was a blast!!! Yes You Can, Carole!!! Bless you. *Hugs* Ree

Chris, I understand completely. And yes it does suck, big time. This past Thursday was the one year 'anniversary' (lack of a better term) of my mom's seizure which led to her craniotomy the next day a year ago. For those two days I relieved every momemt of a year ago. I'd look at my watch and say to myself, "Oh at this time a year ago ma was in still in surgery or my grandmother or brother was calling me to give me an update, etc." I can still remember so much of last year concerning my mom, just like it was yesterday. I understand the feeling of not having that normalcy in life anymore. Just today I went clothes shopping and got me a great deal on some shoes. And the first person I thought of was my mom. I was thinking, I can't call her and tell her about my shopping expedition and my new cute shoes. I like to shop, but my mom LOVED to shop and comparing notes on our shopping expeditions was one of "our" things to do. It might've been a simple ritual for us, but it was one part of our mother-daughter things and now I can't do that anymore. Just like I couldn't tell her I am back in school this month. But school does help me regain some normalcy in my life. I tell myself my mom has left us only four and a half months ago and it will take time-this new normal work itself out. I do understand Chris.... *hugs*

I have to agree, IT IS ABOUT TIME!!!! especially to see the UK possibly embarking on a national early detection program. I hope the early detection study leads to a national screening program sooner than later. Both of these topics: reduction in Rx pricing and early detection program...it is about time!!!

GardenLady, I'm sorry to hear this news. My mom had brain mets(3) at her dx. And they immediately started her on steroids, followed by radiation. There was a noticeable improvement on the steroids mostly in her coordination, but her memory still lapsed (short-term memory) even when on steroids. In y mom's case, she could remember long term event from years agos, but the short term she could not tell you what she just ate for dinner ten minutes ago. It was only after she had a craniotomy that her memory, short term came back. Another thing, my mom's appetite increased dramatically when she was on steroids. It seemed like she was eating every hour on the hour. Also, if my memory is correct they will do blood tests to keep an eye on the steroid levels in the bloodstream. My thoughts and prayers are with you and your family at this time. *Hugs*

Denise, This had to really send you for a major loop; I know that is an understatement. I hope the cough can be gotten under control soon. Please take care of yourself as well and let us know the results of the test and how the cough and blood sugar is doing. *Hugs*

Jude, What can I say to you except comfort to get you through this time, blessings of peace but also your love of thirty-five year, Don M, s will always be with you. May the smile and peace of your husband also give you comfort as well. Don offered words to me when my mom passed a few months ago. But prior to my mom's passing it was Don's story of his battle with this disease, it was one of a few, that offered me hope when I began this journey over a year ago with my mom. Like others have and will probably state: you and your family have us if you need us- we are here. Prayers of peace,blessings and comfort to you Jude and your family.Your husband left a great legacy to us here at LCSC. *Hugs*

Amanda, My deep and heartfelt sympathies to you and your family. Your daddy was supportive of me a few months ago when I was at the stage of saying goodbye to my mom. Don M was very supportive and informative to everyone here at LCSC. His courage example gave others the willpower and hope to fight. Like you asked Amanda, your dad earned his bragging rights...I know how it is at this time but also know he is free!!! Prayers for your family at this time. *Hugs*

Just wanted to send my prayer to you and Bill and your family. I read your posts you are a tower a strength. Keep believing... Namaste, Ree

I never heard of this but it seems like wonderful tribute to your loved ones. Hoping this service will continue annually. Thanks for sharing this. Peace and Blessings to you and yours as well this holiday season. Namaste, Ree

Recently, I have asked myself this question. Up to about a month ago I was focused on taking care of my mom's business; and that gave me an outlet not to focus on grieving or depression. But I think that brought about my anger because I was thinking, "Ma, you should be here to enjoy the fruits of your labor." I fought this disease with my mom while she battled the disease, but I grieved heavily during that time as well. But I stopped analyzing what phase of grief I am in...I don't know or really care what stage I am in. If I feel like crying I do, whether it is on the commuter train in front of people I don't know . If the tears come I let them fall. If something funny happens and I know my mom would have got a kick out of it sometimes I smile or laugh harder or I laugh and cry at the same time. But I do believe grief will encompass a bit of depression. The question is ...when is the depression taking control? I think that now that I have gone through my mom's first birthday without her and my first birthday without her (no card from her or phone call from her)and now the holidays are here, I think now I am starting to experience a renewed grief and possibily depression in some form. I find that although I am not sobbing every minute of the day, I have some mood swings on occassion. I do find that I am irritated more than usual. (lack of patience and I am not one for patience anyway) I made myself a promise that if I did not see an improvement in my 'irritabilty' by a certain date, I would join a grief counselling group. But I am lucky: my brother and grandmother and I have each other and we can talk about what we feel. and in that I have friends who can relate to what I am going through because unfortunately they have been down this road already; they have lost a parent. One thing they all have told me which I try to hold to is - the "hole" never goes away, you will always miss your parent BUT life must go on. You will live a full life and learn to live with that hole in your heart." Or as my brother has told me, "We aren't the first and unfortunately, we won't be the last." Of course something I know, everyone does NOT grieve the same way and one may not grieve the same for each passing they grieve for. Like I said , for me, the emotion that dominates at this point, may be anger/irritable. I am angry that my mom is gone...I am pissed that there isn't a cure for lung cancer, I am extremely heartbroken at seeing newly diagnosed patients, I rally in my heart for those that are still fighting, I am livid lung cancer funding is so low, I cry in understanding hat what others are feeling who have lost a love oned to this disease and I get anryr at why and what caused us to grieve . .. I can go on and on....but I have to find a way to deal with these feellings constuctively. So in the spirit of healing... I am creating a website in honor of my mom and I do find considerable comnfort in that. And another way I can deal wth this constructivey is through advocacy for lung cancer awareness in some form. It would be a fitting legacy to my mom and hopefully to support those in the fight and to bring awareness to this disease. Our parents birthed and /or nurtured us, they know us as well if not better than we know ourselves, ...I think if we spent our lives grieving or being in state or depression for them they would not like it (I believe that),. I think if we uphold the best of them that is within us, they would be happy and proud of us to the extreme. I will miss my mom ALWAYS, just as I know each of us here will miss our loved one(s), but I will live a fulfilling life, a good life ( I'll try my best) and that will honor my mom. At least I will try. Thanks for bring up this topic for discussion. Namaste, Ree

It was one year ago tonight on Dec 18 2007 at 7:38 pm my brother called me to tell me the news that changes our lives forever. I can still remember every word of that conversation. I can remember I had just come home from Target purchasing the lastest cd of my musical pleasure. I didn't have a care in the world until 7:38pm that evening. And after speaking with my brother and grandmother, I called my mother, who was in the hospital, resting as she was scheduled to have a lung biopsy the next day. I am to this day surprised at how "calm" I was speaking with my mom that night. One year ago...365 days have passed... and in that time, the woman that knew me before I knew myself, who birthed me, nurtured and raised me has departed from this world. My first Christmas without her, my mom... Tonight I put together the floral arrangement I am taking with me when I go home for the holidays to put on her grave. I started crying, but then again, I felt 'good' putting all the flowers together to create something special for my mom. Then I thought about why I am making this floral arrangement and felt sad again. I guess that's how it will be for a while. I don't know how my brother and grandma and I will do next week, but at least we will be together. But someone will be missed/missing. One year ago...365 days have passed...and we as a family and me as an individual, our world was ripped apart a year ago tonight. I still can remember most, if not all of my mom's doctors' appt, I can still relive moments of the journey that began a year ago tonight. How I hit the internet to find answers...how I didn't fall asleep until it was almost time to wake up the next day. I remember most, if not all of the past 365 days. One year ago tonight...365 days ago..December 18, 2007 at 7:38pm the phone rang...-my world changed forever. Peace and hugs to all....

"Nothing is past, nothing is lost" Amen!! This poem is so true. Thanks for sharing this. Ree

Debbie, I have followed you and Alan's journey while on my own journey with my mom. You, Alan and along with a few others here gave me hope concerning my mom, for you all were such fighters and never gave in. I am glad to see you posted here after a hiatus. I can relate to your post in many ways. This is the first holiday season without my mom. Her birthday was two weeks ago and my birthday is right around the corner, then of course is Christimas and the New Year. A year ago this time, my family and I thought our world was 'safe/normal'. Little did we know just before Christmas a year ago our safe world was lost to us forever by this disease. In addition to my mom, and good friend of my brother's, he was only 35 years old, lost his battle to lung cancer on the same day as my mom, he was dx only two months prior to passing. And another friend of mine, his mother is currently battling. I hope your friend has success with her Gamma knife treatment, sending prayers and positive thoughts her way. This has been a heck of a year. Like you asked, does it ever end? I hope we all have a blessed and peace filled Thanksgiving day and upcoming holiday season. *Hugs* Ree

Thanks for sharing these tips, Christine. The last two are definitely applicable to me. I always donate gifts to charities every year, but this year I had the need to donate more gifts than usual. And tomorrow, I will cook a scaled down version of Thanksgiving meal. The first Thanksgiving without my mom. It will be different. I guess this is just another aspect or road in my 'new normal'. Again thanks for sharing these tips. Ree

A couple of months ago I posted a link to an article about landmark screen program for lung cancer sponsored by I-ELCAP in conjuction with Wellstar in Marietta,GA Here's the link to the previous article http://www.ajc.com/search/content/busin ... lstar.html Well today there was more information not only about lung cancer but a follow up about the screenings from the other article. From what I gather at least 2 people were diagnosed by taking advantage of the program and most important they were diagnosed early meaning a chance to be cured... Here is the link to today's article http://www.ajc.com/living/content/print ... ancer.html

I have to agree with this wholeheartedly. Although I have nothing but kudos for my mom's oncologist and neurosurgeon I cannot say that about some of the other doctors and medical personnel my family had to deal with mainly in terms of "bedside manner" . It seems like doctors don't know how to deliver bad news to family members. Another thing is it seems the minute you bring someone into the ER and they hear a lung cancer dx the first thing they want to do is administer morphine or some other drug. I don't know how many times my family and I had to make it crystal clear we don't want or need morphine right now, that time is not here and now we are here for another reason, ie blood clot, etc) Also another thing is talking over the patient about them. Isn't it common knowledge that even if you THINK a patient cannot hear, that the hearing is the last to go they might be albe to hear. It seems to me patients with this disease aren't really respected enough by some not all medical personnel they way another type of cancer patient is. My grams actually told one doctor, " don't come near my daughter again". She was too through with that particular doctor. For the most part I believe my mom got the best care she could receive given her dx, but with this disease (any one for that matter) one has to stay on top of things and advocate strongly there is a bias I believe by some, not all, members of the medical community. I hope you feel better Shrimp

HeartoftheSouth and Family, I saw your post on the thread for my mom and posted there, but I just wanted to post here as well and say again my thoughts and prayers are with you and your family at this time. I read your signature line/diary--I hope your family has sorted through the confusion with the funeral home about the burial..I don't understand how that could happen!!!Hhow thoughtless of them... Prayers and strength to you and yours at this time Hugs Ree

Thank you all who posted your kind thoughts and prayers for my family and I at this time I was able to scan (somewhat) the cover of my mom's homegoing program it is at the bottom of my profile. I'll leave it there for a couple of weeks. Eventually I'll have a memorial site set up. This was my first week back to my job, etc. I've been in touch with my grams each day except one. She is okay although this Friday she was a bit melancholy when I called, she had been thinking of my mom and my mom was her last surviving child. She said to me, " I can't believe they all left me." So Jaminkw and Filse you are right in your post about mom's burying their children but it is equally hard for children to let go of their parents. I thought I would have had mom at least a few more years, it is very unfair. but it would have been more unfair to keep mom here if she was in pain and nothing more could be done. Thank you Ry, you are right about my grandmother being with with mom. Grams said that being with ma at the end brought her, a sense of peace -so yeah it was right and her being their with mom brought me a sense of peace as well and along with faith too. HeartolftheSouth- I am so sorry to hear about your grandma, same day as my mom. Thank you for your words of comfort to me and mine. I hope you and your family are holding on to each other at this time, but remember, your grandma is no longer suffering and you and yours, like mine, have a lifetime of loving memories, that is what she would want you to focus on. I went back to work on Monday, (I should have taken an extra day off instead of going back the day after I arrived back in town...anyway) I have also been trying to settle ma's things...phone calls, emails, letters, etc. but that makes me feel close to her too, this is all so strange... again, thank you all so much. Hugs Ree (Phylsgirl)

Just got back in town last night and I just wanted to let everyone know my mom, Phyllis, passed from this life on August 30, 2008. She was in the hospital and my grandmother was with her when she took her last labored breath. My grandmother stayed in the hospital for the last three nights and my brother brought her change of clothing and food during that time. My grandmother told me she told my mom, that we don't want to see her suffer anymore, and it is okay to let go. That we will miss her, but put her hand in the Lord's to lead her way. My grandmother also told mom we will always love her, but we will be okay, promise. Then my grandmother said she gave my mom a kiss and my mom took her final labored breath. For some reason knowing my grandmother was with my mom at the end helped me alot. I had just seen my mom a week and a half prior to her passing, spending ten days back in my hometown (NYC), I think that helped me deal with this too. I was on my way back for another visit when she passed (prior post on the subject ) http://lungevity.org/l_community/viewtopic.php?t=38459. The funeral was a week ago today(September 8 and although my mom did not leave instructions, I believe I planned it the way she would have wanted it; a beautiful homegoing ceremony for a lovely lady, my mom. We did not post an obit in the paper, but I will either set up one on a website or scan a photo of the program at a later date. Again just want to thank everyone here for their support and I hope I can offer support in the future for those in need. Thank you all !!! Hugs Ree (Phylsgirl)

Mom dx 12-17-2007 so today is eight months and eleven days since dx. Although things are a bit rough right now, my mom is a fighter and still fighting. We are blessed!!! Ree

SharRob When my mom was dx back in December 2007 she too was Stage 4 with mets to the brain. Although she was dx in 12-07, her lung tumor had been there and growing for a minimum of a year and due to the size and other factors of the tumor after the biopsy the doctors feel the tumor was there longer than a year In hindsight, the only major symptom mom had until about 4 months prior to the dx, was an awful cough which she had mostly in 2006. Believe it or not the cough subsided, but then in the late summer of 2007 the brain mets was caused more obvious symptoms (slurred speech, affecting mom's concentration, headaches how she was walking, etc It was really the symptoms of the brain mets that caused my grandmother and brother to drag my mom to the ER which led to the dx in December 2007. And the tumor in her brain was Huge when it was dx and removed in Jan 2008. The cough in 2006 was probably a symptom, but it's one that is usually ignored as "a cold or "touch of the flu" etc. So although I am not a doctor, I would say yes, it is possible to be stage 4 and not know about it or have those symptoms that are brushed aside as something minor. All the best to you, your dad and your family. Ree

Thank you Don, Judy, and Flyman36. Just an update... Mom's breathing did get better afterIit seems the position of her head may have had something to do with why she was having trouble breathing..From what my grandmother was telling me, the day my mom had trouble breathing (last Friday) it seems she was either leaning forward or something. I don't know, it hard sometimes to get news second hand and to really understand what's going on but whatever it was (personally , I think moving her from one ward to another may have had something to to with it) it seemed to have passed. On this Tuesday my grandmother said the doctor did say was that my mom is "fighting" the ventilator; she wants to try to breathe on her own. From what the doctor told me when I was there a week and a half ago, my mom breathes two breaths on her own and then the rest of her breaths areventilator assisted; this is a per minute set up. So I asked my grandmother why don't they try to let ma breathe more on her own per minute? I was told that since ma has only one lung that is functioning to any degree the doctors don't want to overtire it with my mom breathing on her own. Also I was told on this Tuesday we will be meeting with the doctors today(Thursday) to talk about resuscitate orders. My brother says he will call me on my cell phone so I can partake in the meeting, But just in case the doctors/hospital does not allow him to call me, we have already KNOW to resuscitate my mom if the time comes. A co-worker of mine, who went do a path similar to this with her dad a few years ago told me this is standard protocol to discuss this and have clear understanding of the family/patient's wishes before the need may arise so not to worry which I initially did. Well, I'll be heading back to my hometown and family again this weekend to stay for a week. Thank God for FMLA even if it is without pay. I'll be able to talk and question the new doctors for myself and get answers directly. But most important I can spend time with my mom. Again, thanks to everyone for their prayers and thoughts. When I leave this weekend to head home I will be without or with very limited internet access for the week I am visiting mom so I will update when I return. Love to all Ree