fillise
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Posts posted by fillise
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Congratulations! You are in inspiration for us all!
Susan
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I'm angry about the recurrance of Elizabeth Edward's breat cancer. I'm angry that she has to deal with this awful disease, but I'm even more angry that there is now another prominent woman with breast cancer. There will be more walks, more pink ribbons, more raising awareness. And yet, Lung Cancer is the leading cause of cancer deaths in the US. More women will die of lung cancer than will die of breat, ovarian and cervical cancers combined. A great deal more money is spent per breat cancer death than per lung cancer death in this country.
I hate the fact that it feels like we are pitted against the other cancers in the race for funding, But look what increased funding has done to improve early detection and survival rates for breast cancer. My own mother is a 7 year survivor of breast cancer. But now she has a completely different cancer and no one has devoted the time or the money or the awareness to finding the cure of lung cancer.
I'm angry because I feel like we are going to be lost again. . .
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Amanda--My thought and prayers are with you.--Susan
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Sorry you have to be here--but welcome. When my Mom's Onc told her that he wasn't sure he could cure her (stage IV NSCLC with mets to the spine), but he thought he could keep her tumor stable indefinately, she told me that for the first time she didn't feel like she was under a death sentance. That, of course, implies incurable, but it sounds like your mom will get aggressive treatment. Stable is wonderful.--Susan
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It's not as off topic as might think. About a year ago my cat was diagnosed with Feline Chronic Renal Failure. We treated her as best we could, but I always knew i was only buying time. I was so upset wondering how many days together we had left. Then it danwed on me that I should be thinking about her illness completely different. From that day onward I treated every additional day with her as if it was a gift. Instead of subtracting time down I was adding time together up. It made all the difference in the final months and weeks I had with her. I finally had to let her go on Dec 2nd, but I was very grateful for the gift of her companionship every single day she was with me. It was still hard to let her go--the hardest thing I've ever done.
Just a month later my mom was diagnosed with lung cancer and it seemed to me that maybe my cat's purpose had been to teach me something about life. So every day I have with my mom is a gift. None of us are promised tomorrow (or even all of today), so everyday I have with her is a gift, and I'm thankful for every single one of them.
Crystal is teaching you someting just like Miss Belle taught me a valuable lesson. It's closer than you think.--Susan
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Missy--let us help you. So many here seem to have been where you are now and many more of us know we may soon be where you are now. Let us help.--Susan
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Heather, you are in my thoughts and prayers during this very difficult time.
Susan
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I understand your need to be with your Dad. My mother is in NC and I'm in Alabama. It's hard not to drop everything to go be with them. But I bet your Dad doesn't want that. As much as he would probably love to see you, he probably wants you to live your life. When my Mom was first diagnosed, I had extended my visit over the Christmas Holidays. She finally kicked me out and told me to go back to my life. I call just about every day, but I have to remember to talk about life, not just the disease.
I suspect that being far away, and being a nursing student you will want to know everything about all the treatments and how he is feeling. I do too. I finally got on my mom's nerves. Now I have to remember to be attentive to how she is feeling, but to talk about the little things, the way we always did.
If you can head out there for a visit, try to arrange it to coincide with a Dr. visit. I was able to go with my mom to her first appointments abd talk with the doctors and, more importantly, exchange phone numbers with them. I am very conforted knowing that I can call them myself if I need to.
One other thing I've been able to do long distance is prepare questions. When my mom was preparing for her chemo, I emailed her and her best friend (who goes with her to appointments) a list of questions. The Dr. was terrific about answering the questions and explaining. His PA even wrote the answers to some questions so she could take it home with her.
As the shock wears off, you will find other ways to help your Dad. God Bless you. You are where I was just a couple of months ago. You don't like it, but you learn to deal with it. This site is certainly more hopeful that almost any other website out there. I'm so glad you found your way here! --Susan
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Sending prayers your way. I know this can't be easy, but as you do everything you can to help your mom during the next few weeks, I think everyone on this board will do everything we can to help you. God Bless.--Susan
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Beth, Your story sounds so similar to mine. My mom also began having trouble walking with a lot of back pain right after Thanksgiving. One scan led to another and she was diagnosed with Stage IV NSCLC on Jan 5th. She did 15 radiation treatments to her back and just finished her second chemo treatment. My mom does one chemo (carbo/taxol)every three weeks and seems to be tolerating it fairly well. She is 77 and was in perfect health before the LC. Is your mom doing the chemo every week? That might explain why this is so hard on her. The weekend after my mom has her treatment she feels week and sore, but then begins to feel stronger by Monday (she has her treatments on Thursdays). I think it helps that she has a little time to recover between the treatments. Have you talked with the onc. about why he/she feels this combo/schedule is the best? Does your mom tell the Dr. how hard this is on her (my mom hesititates--I have his number and can call him myself if I have a question or I think there is something he needs to know)?
I understand how scary this is. I've been the last couple of months being terrified, but this board really helps. Good luck--Susan
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Finding the balance is hard. I actually went two full days without calling her this week and so yesterday morning we have a good store of "general life stuff" to talk about, not just the disease. It was a great conversation. And then she floored me. She mentioned that they didn't know for sure the mass in her lung was malignant! It's true they didn't biopsy the lung, because they biopsied the tumors in her spine and the pathology was consistent with lung cancer. I didn't challenge her, but how much should I gently try to help her understand? She says things that just stun me every now and then. The idea of cancer hasn't been that hard to understand, but the LUNG cancer has really been difficult for her to grasp. She wouldn't believe that she had anything in her lung until her radiologist took her back into his office and pulled her CT scan up on his computer. Now she has convinced herself it isn't malignant. I don't know whether I need to help her understand or not.
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Peg, My mom is 77 years old with stage IV NSCLC with mets to the spine. She did three weeks of radiation to the spine and just finished her second of four initial chemo treatments. She is tolerating them well. Ae should NOT be a factor is determining whether to treat or not. There are many people here who are successfully fighting even advanced stages of this disease. You've gotten good advice here. An oncologist can help your mother understand her options and decide on the best course of action. Come back and let us know how she is doing.
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Don,
I just wanted to tell you that I love the photo of you and your wife. I am encouraged by her fou-year victory! Thanks, Susan
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Hi Mike--I, too am new at this with my 77 year-old mom. What does your mom want to do? My mom did three weeks of radiation for mets to her spine. That was a piece of cake for her. She then started chemo and while that hasn't been a piece of cake, it hasn't been nearly as bad as she feared. Other than the first weekened after chemo (she takes one treatment every three weeks) she can go to her church meetings and out with friends. But she is committed to fighting this. How does your mom feel about this and what is she willing to do to fight it? It's important to listen. Good luck--Susan
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Shelley--You are right, this is so very hard. I've done all the internet research. My mom's oncologist told her to stay off the internet and I think, in her case, he was right. When I first got on and started reading the median life survival rates for stage IV, I just sat at the computer and cried. Only after digging much much deeper did I find sites like this one where there are people who have beaten those odds. I fully believe my mother is going to be one of those, so I do all the research and send her questions to ask her drs. She is lucky in that her best friend is a nurse and goes with her to appts. to take notes and listen. I will go home for Easter and then, I hope to be there when she gets the results of next scan in May.
Jen--Thanks! It helps so much to hear from folks struggling with the same issues. My family laughs at me for being bossy, but I have to take charge in order to get things done. Having been with my Mom for the first oncologist appointment, and hearing what she told folks about that visit (when she called my brother to tell him, she told him what she heard the Dr. say and then I got on the phone and said "let me tell you what the Dr. really said. . ."). I don't blame her, she was in shock. While we were sitting in the radiologists office that morning waiting to hear the results of the biopsy my father called to say that my mother's sister had just passed away. So mom heard "your sister died" and "you have lung cancer" in a span of about 15 minutes. She pretty much went into shock and shut down at that point. At any rate, I think it is helpful to have someone to help her listen and remember. I'm sure we will find our pace. Thanks--Susan
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I, too, am new here, but the people here are fabulous about sharng experiences and information. You've come to the right place. The non-smoking thing is becoming more and more important. My mom is also a NS with lung cancer. Her oncologist said that the story of non-smokers and lung cancer, especially in women, is only now starting to eb written.
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Shelley--I've been reading bout your amazing mom and you for several weeks. I am one of two children, so we don't have 5 to drive my mom crazy. My brother lost his father-in-law to NSCLC on Feb 22. When Mom was diagnosed he was watching his FIL in the final stages of his disease, so his reaction has been much different. He's good and attentive, but I'm the one Mom and Dad rely on to get things done. You make a good point about allowing our moms to enjoy their normal routines. The day after my mom was diagnosed she kicked me out of the house (I had delayed returning to my home by a week to be with her during the biopsy and for the results)and told me it was time for me to go back to my life. As if.
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So glad for your good news!!! I'm all for good news!
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Thanks everyone! It sure helps to have folks to talk with who have been through this. I'm going to do my very best not to call my Mom today. Before her second chemo I cut back to every other day or so, and she seemed to like that better.
Again, you don't know (or, I guess, maybe you do) how good it is to hear from people who have been successfully fighting this disease. THANK YOU! Susan
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but I guess that's true for everyone.
My mom, a 76 year-old non smoker was diagnosed with stage IV NSCLC with mets to the spine on January 5, 2007. She began having trouble with back pain just after Thanksgiving. The first x-ray suggested a compression fracture, but after they did an MRI and Bone Scan they ordered a biopsy and head, chest, and neck CT scan for Jan 2nd. We got the bad news on Jan 5th. She immediatly began three weeks of radiation to the spine which helped to alleviate the back pain. She just finished her second of 4 cycles of Carboplatin and Taxol. She seems to be tolerating it well. No nausea, but she had lost all of her hair by the time she went for her thrd treatment.
This site has been a Godsend because it the the first place where I have been able to read about people actually making progress against this disease. I've learned a lot on this message board and am sure there is still much I need to learn.
I am 48, single and live 500 miles from my Mom and Dad. I was able to be with her when she was diagnosed and again a month later, but haven't been able to get back since. I have been in contact with her oncologist. I think I'm starting to annoy her by calling every night to see how she is doing. Those of you who are have the disease may be able to offer advice on how to strike a balance between being concerned and being overbearing. I tend towards the overbearing when it comes to making sure my family is ok.
Anyway, I just wanted to introduce myself. Thanks, Susan
Politics or Love?
in CAREGIVER RESOURCE CENTER
Posted
I was involved in a very intense discussion about this topic on another board (a political one). A year ago I might have thought he should not run. But after my mom was diagnosed, one of the things she seems to want is to retain as much of her normal life as possible. To do otherwise, to her, seems to be saying that she is giving in to the disease.
I know for another person, another couple the right thing to do might be different. But now that I'm living the scenaro, I'm willing the respect the Edwards enough to say that they are the most qualified to make this decision.