emurphy Posted May 10, 2004 Share Posted May 10, 2004 My mom has a mass in her lung , lesions on her liver & brain and something about the lymph nodes surrounding her heart. Her liver & pancreas are swollen and "the fish" ( my personal assessment of the smug little ....doctor of my moms) has said that the therapy would be non surgical because of metasteses. I have been online all night- I just got back from Texarkana - all of this has happened between thursday & now- and quite honestly i feel like i am on a handful of codeine- everything is distant and removed and most of what i am reading tells me she is stage four ( the mass is large, the lesions are many) and estimating her life expectancy in weeks. Help me find how to save her- because weeks will not do it . I need her, my kids need her - and my 11 year old daughter - who is literally a misunderstood genious ( this is nothing to brag about- it is a gift of God- but it is a burden too) cannot lose the one person on this earth who can and does completely accept and embrace her differences . ( as her mother i have to keep her grounded- her grandmother doesnt- and she needs that so badly). Please tell me everything I need to do, read, demand of her docs, feed her & look into to save my mom. She is the best person you have ever known- she has worked with "special needs " people for almost a decade, and with battered women. She took care of her father, and takes care of her mother and never asked for or expected anything for herself. I am an only child- I lost my dad when i was 20- i cannot bear being orphaned- even at 36- she is my best friend- i am asking for your help- please. Quote Link to comment Share on other sites More sharing options...
karenl Posted May 10, 2004 Share Posted May 10, 2004 Hi and welcome to the Board. You have come to the right place to find support, advice and information. Everyone here knows what you are going through right now. I think the period between diagnosis and treatment is perhaps the most difficult - hopefully your mom's doctors will have her started on something before too long. If you are interested in alternative and complementary therapies, check out that forum, as there is some great information about things that might help your mom. You have obviously done some research - don't pay too much attention to the statistics you find on the internet, or the prognosis trotted out by the pesky doctor. Your mom is a unique individual, not a cancer statistic. If you stick with this board, you will find MANY people who are continuing to outlive the dismal prognosis they were given. I would also encourage your mom to visit the Board too, so that she can see there ARE success stories. I wish you and your mom all the best in this battle. Karen Quote Link to comment Share on other sites More sharing options...
brm1949 Posted May 10, 2004 Share Posted May 10, 2004 My prayers are with you and your mother for strength and courage as you go through this process. Its not easy but there is always hope, many of us have outlived the prognosis we were given and continue to do well. It is a hard road but you will gain strength. The people here are great and do understand where you are at and will give you much needed support. Please keep coming back and keep us updated. I've learned that statistics do not encourage or help anyone. Take each day moment by moment and try not to dwell on the future. That does nothing for the present and is a waste of precious time that you have with your mother. Your role as a caregiver is not easy but do your best to be supportive to her as now she needs you to be strong as does your daughter. I am truly sorry that you had to find out about us this way, but when you need to vent, ask questions and a shoulder to cry on, we are here. It is what it is, but there is difinitely hope and God gives much grace to bear the burden that comes with it. He has never left me nor forsaken me but has always given me the strength to deal with it one day at a time. His mercy is renewed every morning. He is an ever present help in time of need. Trust in Him to bear you up. Quote Link to comment Share on other sites More sharing options...
Donna G Posted May 10, 2004 Share Posted May 10, 2004 Emurphy, welcome. First, what is the plan? What are they doing about the brain tumor? Is chemo coming now for the lung, liver. Is your mother having any symptoms? Are they treating those. Please keep us posted. All of this is very stressful, believe me we know. I pray for your peace and Mom and your family. Donna G Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted May 10, 2004 Share Posted May 10, 2004 Gosh, your pain came though my monitor. I know what your feeling, we all do. Its an all-consuming fear that had a hold on your very soul and life as you knew it is over. Ok , am I close. My mom was dx in Jan 03' passed in august of 03' she was to me what your mom obvoiusly is to you. I miss her horribly and totally but the pain eases. Now my dad is battling. He was dx's Jan 04' (hows that for a year from hell) he has completed all the treatment he is willing to take and were just living now. If you hate the attitude of your moms doctor so much "fire him" now. Find another oncologist. talk to people, get recomendations, call ALLCASE and ask if they can recommend someone in your area. Be your moms advocate. Thats, I'm afraid, all your going to be able to control on the roller coaster ride from hell. Even if your mom is stage 4, there are people here stage 4 who are in Remission. Its do-able. there is no one on earth who can tell you when your mom is going to pass or what from. ok she has cancer, BUT she could die from something completely unrelated. Cancer does not always kill. treatment today is different then from the things you read on the internet were written. if a web site is negative "click close" and come here. there is someone on this board who has been there, done that to almost everything you can think of in regards to lung cancer. please try to put the shock away, it wont help now. Get informed and get mad at cancer. 1) which chemos are they going to try first. 2) is radiation a possibility 3) is surgery totally out 3) what stage is she 4) when can treatment start, (insist this week if possible) 5) get a second opinion. start there and see what they say. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 10, 2004 Share Posted May 10, 2004 Welcome and I also am sorry you had to find us but glad you did. There are a lot of treatments available to your Mom. You need to get a medical team in place that will aggressively treat this beast! As long as your Mom is breathing there is hope so do NOT pay attention to statistics cause they are WRONG!! Your Mom is your MOM not a statistic! Ask questions, be sure she has given permission for you to get information so you can stay on top of what they are doing. Your family is in my prayers. God Bless, MO Quote Link to comment Share on other sites More sharing options...
Margaret Posted May 10, 2004 Share Posted May 10, 2004 This is a very difficult time for your Mother and for you, but it is a crucial time. You need a medical team in which you have confidence and one which holds out hope...and there is hope because there are treatments available. Before reading any of those outdated and unhelpful statistics (you more than anyone know that your Mother is an individual), if you can, look at the letter to newly diagnosed at http://www.blochcancer.org/ Keep us informed and know that you are not alone in this battle. Margaret Quote Link to comment Share on other sites More sharing options...
Rick Posted May 10, 2004 Share Posted May 10, 2004 Welcome and sorry to hear of your mothers condition. This is exactly the way my wife found of her dad. He went to the doctor because he lost his voice and pow, the medical verdict was in. Dont pronounce you mom diceased but rather get on her playing field and block for her. You will run across MANY doctors that are cold and non-caring, you know what you do? You fire them and move on. It is key to get a good doctor both manners and inteligence. The battle will be a long tough one that you and you mom will want to have a Great doctor on your team. Please keep us updated.. Rick Quote Link to comment Share on other sites More sharing options...
rick m Posted May 10, 2004 Share Posted May 10, 2004 hello, i am also sorry to here of your mom's condition. i totally agree with all the above members opinoins,,,,get another dr who will be on your side,,,not a negative one,,,,,also tell your mom to put on the shoulder pads, strap on the helmet, and pop in the mouth piece and get ready to do some down right nasty fighting in the trenches!!!!! do not give up,,,always is hope!!!!! Quote Link to comment Share on other sites More sharing options...
natalie Posted May 10, 2004 Share Posted May 10, 2004 I'm so sorry that you have to go through this. I ditto what everyone has posted back to you. Find a compassionate and caring doctor. I had to go through 3 before I found the right one for my mom. I also am an only child and my mom was 56 so I can especially relate to you. I feel your pain and can completely empathise with you. They are coming out with some great treatments, do NOT give up hope. There are some amazing survivors on this board. Look into clinical trials and alternative treatments. I recommend that your mom reads the Lance Armstrong book. I hear that it is inspirational and will provide you some hope. Lance Armstrong had multiple lesions in his brain, lungs, testicles and he beat it. Quote Link to comment Share on other sites More sharing options...
rick m Posted May 10, 2004 Share Posted May 10, 2004 yes definatley have her read the book as natalie said,,it is called it's not about the bike......i read it...very inspiring.....it is a big help in wearing your "nothin gonna stop me attitude!!! Quote Link to comment Share on other sites More sharing options...
DianeR Posted May 11, 2004 Share Posted May 11, 2004 I am so sorry to hear that your mom is battling this terrible disease. I know exactly how you feel, as my dad was dx a stage IV in Jan. 04. This website has helped me so much. Here I see there are survivors! Check here often because you will get wonderful support and lots of information. I will keep you and your mom in my prayers. Diane Quote Link to comment Share on other sites More sharing options...
emurphy Posted May 11, 2004 Author Share Posted May 11, 2004 You guys - thank you so much! I expect to hear from her doc tomorrow- theydid the bronchoscopy this morning and threw in a surprise bone marrow test this afternoon. I want to get her moved here ( i am in dallas, she is in texarkana) as soon as they will let her travel. I love her- i can take better care of her. I have to look into getting her assistance / medical treatment for uninsured - she was new to her job and had not been eligible yet for benefits. I called the hotlines and they are sending packets and telling me where to look. I thank God that there are so many resources available- including this one. I can handle being a caregiver- exhaustion, hard work, dirtiness, sore muscles, being broke- whatever--those are just little nothing irritants/ inconveniences, stupid stuff that matters for a second- not a lifetime. What i find unbearable is being afraid and not working- not trying to help , not knowing how- that makes me crazy crazy.I can and will do anything and everything- except wait and sit. There is power in knowledge- but there is more in action. i will let everyone know what the fish says- and if i dont like it- i will tell you if we fired him. thank you guys so much- i have added everyone here to my prayers. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted May 11, 2004 Share Posted May 11, 2004 Hi EMurphy, Well, I can see you have picked up quite a new burden, but at the same time, you seem to have a pretty good sense of humor. I read your signature/history, and cracked up where you wrote that you are: pretending that we are okey flipping dokey Also, that is pretty good that you have called the doctor "the Fish". One more thing, I just absolutely loved your statement: There is power in knowledge- but there is more in action. Wow! That was really a great statement and I'm going to remember that one. I do want to welcome you with all my heart. You sound like a wonderful, loving, caring daughter who will do anything to help her mom fight this very frightening disease. That's the attitude you will need to get through the battle that you and your mom are about to begin. Attitude plays such a big part in it all. You will find some folks on this site who have a great sense of humor, yet they are going through the same circumstances that you and your mom are. It's just a wonderful place and I'm so glad you found us. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 11, 2004 Share Posted May 11, 2004 Gee, emurphy, your mom is so unlucky to have cancer but so very lucky to have you. Cat Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 11, 2004 Share Posted May 11, 2004 Emurphy: So, so sorry we had to meet this way. I hope you find all the support, care and answers you need from your new family here. My heart aches for you and for your mom. Bean_Si is right: Your mom is so lucky to have you. My own daughter lives far away from me and I think she is too young to have to care for me. I fear for her and my son more than anything in the world, even this beast who has paid me a most unwelcome visit. If your mom comes to live with you, I am almost certain that you can add her to your health care policy. You might want to check that. Pls keep us posted and know that there are so many here who truly care and understand. Elaine Quote Link to comment Share on other sites More sharing options...
jamie Posted May 11, 2004 Share Posted May 11, 2004 Hi there.... First things first... IGNORE THE STATISITCS!!!! They dont mean anything. Your Mom is not a statistic, but a person, going through her own battle, and everyone's case is different. It does sound like your mom is a stage 4, but seeing that your not sure, you need to press the doctors for info. Keep in mind that sometimes you need to ask, ask and ask again. A game plan would be nice. I would think your doctors would want to take an aggressive approach to this. My Dad's doctors did, and my Dads outcome is pretty good thus far. My daughter is also "gifted", and knows full well whats going on with my Dad. Smart kids can grasp whats going on, and my daughter seems to be adjusting well enough. Like your daughter, she LOVES LOVES LOVES her PaPa, and the news was hard, but not hopeless. (Her Words). Keep your head up, inform yourself and your Mom, and make sure those doctors are kept in line Keep us posted, we will always be here for your questions... Welcome, Jamie Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted May 11, 2004 Share Posted May 11, 2004 Hello from Ohio! I am sorry to hear about your Mom's diagnosis. Those doctors don't know everything. Your Mom could fool them. I have a friend who has been in stage IV for a long time. One of our relatives was in stage four for a long time. He was not able to have chemo or radiation because of heart and other problems. Some folks are having good luck with Iressa. I myself am in stage 3A and will be 57 soon. I don't feel too bad when I'm sitting but any walking or exertion gets me short of breath and my side still hurts from the lung surgery especially when I walk. Keep Mom comfortable and she is in my thoughts and prayers! Sharon Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted May 11, 2004 Share Posted May 11, 2004 Dear emurphy, I felt your pain through your post. It reminds me so vividly of the pain I felt back in March 2003, when my mom was diagnosed. I felt helpless, lost, scared and completely in the dark. Through the care and compassion of so many here, I turned that around and became very active in my mom's treatment and care. It helped me tremendously to feel like I was doing something. Doctors have so much going on that they don't always know the latest surgeries or clinical trials...so you must be an advocate for yourself and loved one. For instance, is your mom eligible for Radio Frequency Ablation (RFA) for her liver tumors? Maybe she is eligible for the GVAX vaccine (if she has non-small cell lung cancer). I can honestly say that hope is what sustained me and my mom throughout her battle. She in fact never gave up and had received a chemo treatment one week prior to her passing. I also desperately know how you feel about being scared of losing your best friend. I unfortunately lost mine and am dealing with the daily pain. I have a 2 year old daughter and it pains me to know end that she won't have her loving grandma around to lead her through life. But your mom is here and there IS hope!!!! With every breath they take there remains hope. Your mom will be in my prayers. Quote Link to comment Share on other sites More sharing options...
emurphy Posted May 12, 2004 Author Share Posted May 12, 2004 Okay- the fish got flushed! Mom has an actual dx now- and its Stage four. They are going to start with radiation to the brain lesions - I will ask about the Gvax - thanks!!!- They will start chemo in 2 weeks after the first series of radiation- they want her to gain some weight ( the funny thing is- I have always envied my mom her 125 lb 5'10 - and of course painfully buxom & long legs physique- and now she would be better off with my 5'5, 175 !) And honest to pete if one more person tells me she might be better off not fighting this stupid monster I am going to scream. She wont move here and let me care for her- she asked me to respect her wishes as a mother- and a grandmother - and I told her as soon as she is better I am going back to not listening to her again . I told her abou you guys and the importance of being comfortable with her doc, looking for all treatment options, speaking up & out ( she is normally demure- not an inheritable trait !) She could not remember the Onc's name but will get it to me tomorrow ( she is tired) and then- "he n' me are gonna git right chummy". She asked me how I would feel if she did find all this tiring and I told her I would respect any decision - as long as she would respect it if it were me in her position- and I made the same. We are still sticking in Happy Land but we occasionally peek thru the window to reality. Thats okay- we need to do this her way- I dont care whose rules we play by as long as we are both still in the game right? I am still terrified- but now there are things to DO, better- definitely- and she isnt dying today- she is living today. And tomorrow. I told her what everyone said . I told her "Mom- you are not an illness, or a diagnosis- or any other damn thing they can put on paper and wrap in a big manilla folder" she told me not to curse. I cannot tell you how much you guys mean to me already- i want to be the voice of hope for someone like me next year. I have to go check out the info sites- thanks you guys! Quote Link to comment Share on other sites More sharing options...
emurphy Posted May 13, 2004 Author Share Posted May 13, 2004 They will discharge her tomorrow . She sounded exhausted- more MRI's , scans , etc. We hired a maid- my mom likes things very clean and we dont want her wearing herself out . I dont want to be wealthy- i lead a happy life- but I wouldnt mind it being a little easier to budget!!!! I am trying to think of this as the Cancer Lottery- and there has to be a winner somewhere- why not my mom? She says I am the most logical idealist in the world. I wish I could carry her- I am as strong as an ox. If I could give her blood, or an organ- and it could make her stronger, and less scared- it isnt fair really- she is so genteel and elegant. I am the rough one. All my life I have wanted to be like her- now we need her to be like me. May God Bless Everyone Quote Link to comment Share on other sites More sharing options...
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