mamasbabygirl Posted December 29, 2004 Share Posted December 29, 2004 Mom has been doing so well for the past few months. Last night, she had a seizure where she was completely convulsing and what seemed to be her swallowing her tongue. She was taken to the ER via ambulance, where a CT scan revealed 2 lesions on her brain. We met with a different oncologist this morning who said that there is at least one on each side. The MRI later today will reveal if there are others. He said surgery is not an option. Why is surgery never an option for her? I feel like the Drs. have given up! The Dr. today said in front of all of us that the care is palliative which may give her 6-12 months. I guess it opened up my 19 year old brother's eyes as to how sick she really is. All she keeps talking about is that my kids who are 4 and 2 will not remember her. I am at a loss. What can I say? Do you live like this isn't real and keep trying to fool her that the treatment is for a cure or are you realistic and make sure that she is living every day to the fullest bc she IS dying??? Peace to you all in 2005. Lori Quote Link to comment Share on other sites More sharing options...
TAnn Posted December 29, 2004 Share Posted December 29, 2004 Lori, I know how scary this is for all of you. I was also diagnosed with inoperable nsclc and just recently found out I have 6 brain mets. Please do not give up. I was diagnosed in April of 2003. I am 20 months since diagnosis and was told I had less than a year. This journey is full of "bumps in the road" and we must keep our hope alive in order to fight it. (I know, that's easier said than done) Please keep us posted on your mom's progress, and if you have any questions or need to vent, feel free to pm me. TAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 29, 2004 Share Posted December 29, 2004 Lori, sorry about the news of your mom. The mets can be treated with radiation, I believe. I am in the camp that says there is no cure, and we live each day to the fullest, making it the best we can. And, who knows but God, how many there will be. We were told 9 months and we have now traveled 27. Hang in there. Don Quote Link to comment Share on other sites More sharing options...
Haylee_38 Posted December 29, 2004 Share Posted December 29, 2004 Lori, I just want you to know you and mom are in my thoughts and prayers. Haylee Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted December 29, 2004 Share Posted December 29, 2004 Hi Lori I can only imagine that this is a very stressful time for you and your family. Part of jumping in the ring and putting up a good fight is having a great coach. You need to find a coach who will get your Mom through this. I know that oncodoc says that sometimes he will warrant no treatment for individual cases and then the patient will go from doc to doc to find someone who will help, only to be roped into a treatment that was unnecessary. But, on the other hand, your mom may not be in this category at all... It is tough. Maybe you could post your mom's disease and treatments on the "Ask the Experts" column and see what they have to say. At least get a second or even third opinion. I would not be so quick to throw in the towel just yet. I, too, have inoperable lung cancer...25 months out from diagnois. There are many people out there who are farther along than me...way farther. I don't see this as a death sentance at all.. Somethin's going to get me eventually...I think maybe that beer truck that Becky keeps talking about. Let's see what the others have to say, okay? In any event, everything is going to be all right. All my best, Cindi o'h Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted December 29, 2004 Author Share Posted December 29, 2004 You guys are the best. I am praying that she is blessed to live beyond a year. What is the best advice that I can give her? She has always been my coach, through the death of my 29 year old husband, to raising my boys. I cannot imagine my life without her. I still call her when I feel down or panicky. I want to step up to the plate and be her coach, but I just feel like I would be living in a fastasy world. Her mom died of lung cancer at age 67, my mom smoked for 30 years (she has quit), she is still having a ton of pain on her back bc the lung tumor had eaten into her 4th left rib. She takes 6 or more percocets a day, morpheine once a day, ambien, and now the dylantin and decradon to help with the swelling. Does anyone have those horrible factors to consider and make it out alive from this horrible beast? Sorry for my rants.. Lori Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 29, 2004 Share Posted December 29, 2004 My wife is on morphine, probably forever. A lot is in attitude. She has accepted what she cannot do, does what she can, and continues to push on the envelope. Encourage your mom to get involved in things she is interested in and enjoys. It makes for better days, whatever number there are. Don Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted December 29, 2004 Author Share Posted December 29, 2004 I agree Don. I would love for her to "live like you' re dying" (hopefully you have heard the Tim McGraw song). I told her and my brother today that I wanted to take all of us to some place like Colorado, somewhere majestic and beautiful. I lived there with my husband and he was a flyfisherman, so our plan has always been to throw his ashes into a stream when my son who is now 4 turns 9. I told her I wanted to go and she said, I do not want to leave, ever. I just want to live beyond a year. Maybe this will just take some time... Quote Link to comment Share on other sites More sharing options...
Ry Posted December 29, 2004 Share Posted December 29, 2004 You know when you are ill, sometimes its a scary thought to be too far away from your doctors. I had a cousin that had terminal ovarian cancer. A member of her church offered her a vacation to Hawaii for her whole family, but she did not want to be that far from home. He then rented her a condo a couple of hours away on the beach and she had a wonderful week with her family there. So maybe if you think special but closer to home. Now this has nothing to do with your post (sorry) but that person also gave her $30,000.00 to spend however she wanted. She bought all new rocking chairs for the neo-natal unit, a furnace for someone else, and gave it all away and had a wonderful time doing it. Rochelle Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 29, 2004 Share Posted December 29, 2004 Hi Lori, I like your mom and T-Ann had inoperable LC and a met to the brain. Like Don said, positive attitude means a lot. If your mom and you believe and keep saying I am healed, then you are healed and cured. I was dx March 2003. Just stay positive and keep on encouraging your mom and go on with your everyday routines. Don't dwell on this illness... God Bless and prayers, Karen Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted December 29, 2004 Share Posted December 29, 2004 Lori, Get a piece of paper. Now in really BIG numbers write "6 to 12 months". After you do that rip that paper into at least a hundred little pieces and chuck it in the waste basket! Doctors and others come up with those numbers based on what they read in medical journals and their own personal experience with this disease. The studies usually involve a large number of people and what you get is the AVERAGES from that large group. Well you mom is NOT a "large group" of people. She's your mom. A single individual who will live as long as she lives. As for HOW to live. All I can say is that I've been living my life the same way for quite awhile now (long before I was dxd). There is only one "time frame" that really means anything to me. And that's the 24 hours I have to live TODAY. And I don't do it that way 'cause I'm dying. After all we are ALL headed in that direction anyway. I do it because I'm ALIVE today. Oh, and by the by. The numbers I was given when dxd? 8 to 15 months. That was 15 months and 3 days ago and I'm still chugging along. Dean Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 29, 2004 Share Posted December 29, 2004 I hate the word 'palliative.' I really do. It is currently my least favorite word. I'm sorry that you and your mom had to hear it. My mom's LC is inoperable as well. And I'm in the same boat as you--what mind frame do we take? Of course we fight the beast, but do we fight it hoping to beat it, fight it hoping to buy time, or... what? Maybe I think you just fight... for whatever. Your mama will want to fight to see as much of your kiddos as she can. My mama will fight to meet and thoroughly enjoy as much of my daughter on the way that she can. I haven't figured out what 'hope' means yet, but for some reason, without understanding the word, I have gripped onto it with all my might. I agree with what the others say as well. Your mom and my mom are NOT statistics. They are people. I hope my mom blows the doctor's prognosis away. I feel confident that she can. I hope your mom blow's the doctor's prognosis away. I also know the helpless feeling that comes from knowing your mama is in so much pain. It's awful. Maybe too, you don't need to be anything for your mom except her daughter. You cheer her on... You call her when you need her... You listen when she needs to talk... You confide in her when she's up to it. And you cling to that elusively mysterious word hope all the while. ((((hugs)))) to you. I'm sorry for this news. We'll plod along with you. Sending prayers for you and her up now. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted December 29, 2004 Share Posted December 29, 2004 Lori, I hope that I am correctly hearing what you're saying here. It seems to me that you do have hope, but that you want your mom to have hope, and that you also want your mom to live the way the Don and Dean and others have described here. It sounds like your mom is not doing that, and that she is depressed and kind of thinking about the "end" rather than the present. Is that correct? If yes, then here are a couple of threads that were just posted during the past several days that discuss the same type issues (depression and how to encourage hope). There were many outstanding suggestions on these two threads. I hope they help give you some ideas on how you can maybe help your mom, or at least how to help you to better understand where she is coming from: http://lchelp.com/community/viewtopic.php?t=13179 http://www.lchelp.com/community/viewtopic.php?t=13147 Love, Peggy Quote Link to comment Share on other sites More sharing options...
paddy Posted December 30, 2004 Share Posted December 30, 2004 My husband chose to fight and hold out hope until a month or so before he passed away. I regret that we did not do the things that he wanted to do while he was well enough to do them. So my vote is, keep fighting, keep up the hope, but , (just in case,) encourage your Mum to live every day as if it were her last! Give her all the love you can give her and you will have nothing to regret if things don't go well. I send my love, prayers and positive thoughts to you and your Mom and family. Paddy Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted December 30, 2004 Author Share Posted December 30, 2004 Thank you all so much. I guess that once we know more tomorrow, as far as how many brain mets there are and next week after we get the results from the Ct scan of the body, I will know more how I should feel. I learned my lesson very young to live life to its fullest each and every day, bc you don't know what tomorrow holds. It is just hard when the Doc rejects all of my suggestions or WHY CAN'T WE...with a time frame of 6-12 months. I will keep you posted as far as the test results in the next week. I read through these posts every single day and I do pray for each of you that ask. Thanks for being so available and willing to answer my questions and calm my fears. Love, Lori Quote Link to comment Share on other sites More sharing options...
Snowflake Posted December 31, 2004 Share Posted December 31, 2004 Lori, First and foremost, get a second opinion. If the two opinions are very different, get a third opinion. Get the reasons the other doctor/s feel that their treatment would work better than doing nothing, ask for some facts... Yes, she COULD die, but odds are she's going to live, until at least tomorrow...and the day after...and next week. Make as many good memories as you can with the time you have. Leave no "what if" unturned. If she doesn't want to go far, find fun things at home, be a tourist of your own state or county or whatever is comfortable to her. Have parties where her family and friends are invited and she can see all those people that at a funeral will say, "If I had only known, I would have visited". She is seriously ill, now is a good time to see people that only meet for weddings and funerals - a party, find a reason! Heck, throw a Mardi Gras themed party with beads and Zydeco music and cajun cookin' and gold coins and purple, green and gold shiny garland... Have a helluva party that they'll all be talking about for years to come - "Remember that party had in 2005? Imagine, a Mardi Gras party in !" Make memories...beware of beer trucks... And hope? Well, it's one of my favorite poems: Hope is a Thing with Feathers Emily Dickenson Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all, And sweetest in the gale is heard; And sore must be the storm That could abash the little bird That kept so many warm. I've heard it in the chillest land, And on the strangest sea; Yet, never, in extremity, It asked a crumb of me. I hope her book of life is in the middle chapters, but no matter how long or how short it is, I hope it is sweet and savored to the last drop! Take care, Becky Quote Link to comment Share on other sites More sharing options...
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