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Brandie721

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  1. Kelly, I know what you mean. I keep it to myself as well. As a result people think I am "over it." It has been a month today - so no I am NOT over it. People grieve in so many ways. Just because we choose to do it when no one is looking, doesn't as you say, mean we are not doing it. We just don't feel like causing a big scene. You don't need to defend yourself. I wish I could have been as strong as you and have spoken at my Mom's wake or funeral. I knew I wouldn't be able to without crying. I would have loved to. And I think you are amazingly strong for having accomplished that. People are proud of many things in life. That would be one of the big ones in my book. take care, Brandie
  2. Hi there, Absolutely push for answers. If I learned anything in this whole thing, it is that you have to advocate constantly to get good care. In regards to eating, my mom like ensure and also ramen noodles (which have a ton of fat...I didn't know). The doctors said let her eat anything she feels like. She was also a fan of Egg McMuffins! Regarding hospice, I just faced this decision last month. I had always said I would take care of Mom at home but when things went quickly down hill and I needed the support of the Visiting Nurses (who would also provide hospice care), it wasn't there. Many hospitals do keep a set number of hospice patients. My Mom was able to be kept inpatient based on the fact that her level of care was too much for me to handle. Her care was wonderful and I am glad I did it. I was able to still sleep there with her, so it didn't limit our time together. Good luck with everything. Please let me know if there is anything else I can do. My Mom sounds so similar to yours. She had symptoms for years and between avoiding the doctor and seeing a bad one, it was all too late. Brandie
  3. Kelly, That is the most perfect quote. thanks for sharing it. Brandie
  4. Brandie721

    Do you ever ?

    Hi Katie, I understand what you are saying. It's not that life can't go on. And it's not that I can't keep living. It's just simply that my life isn't as happy without my Mom. People say "oh that will change when (insert standard phrase here)." But it won't. Period. I am so sorry you have to go through double the pain. You are incredibly strong. And somehow, someday, we'll learn to patch up that hole in our hearts. Take care, Brandie
  5. On Saturday, May 19 I was married. On Sunday May 20, my Mom passed away. She never made it to my wedding - which was all for her and it was the one thing that kept her going. She never had a wedding (her and my dad eloped) and she had dreamed for so long of my wedding. She waited for us to go back to the hospital to tell her what happened the night before and then she passed away. It has been the most horrible two weeks of my life. What an awful thing to say when you've just gotten married, huh? My Mom went into the ER on mother's day (we had gotten her red sox tickets as a surprise because she had been wanting to go ever since she moved in with me in Boston - she never made it) and had a large accumulation of fluid around her heart. I was told if they didn't remove it, she would die that day and even if they did she'd not last more than a week. It went downhill so quickly at the end. The doctor had just told us we could FINALLY resume chemo and then she just stopped eating and drinking and grew weaker, incontinent and moaned and whimpered instead of sleeping. My Mom was unconcious the week before my wedding. We were left with the most horrible decision to have to make - go ahead with the wedding or cancel it. No one should ever have to make a decision like that. But my Mom held on for us. It was her wedding gift to me. It's been one week since she died. The pomp and circumstance of her funeral are over. I know the pain is just beginning. I miss her more than life itself.
  6. Hi Missy - I can't even begin to imagine how you feel. The hurt must be so painful. During my Moms ups and downs she had a prolonged, severe period of paranoia. The docs prescribed Zyprexa and it has really helped. Might be an option for your Mom to try. Take care, Brandie
  7. Hi there, Fluid intake is a constant battle with my Mom. She has been dehydrated several times and the side-effects are not nice. She has had low BP and also a UTI which caused major confusion. She pretty much drinks gatorade all the time now. The elctrolytes plus the sugar is a winning combo to me. But it is just getting her to drink enough of it. I also understand that ingesting caffinated products makes you actually have to compensate even more. Staying hydrated is so important. The watermelon sounds like a great idea. I will see if that will work on my mom also. good luck! Brandie
  8. Brandie721

    Temodar

    Hi - Can anyone share with me their experience using Temodar as a chemo to treat brain mets? This has been suggested for my Mom because a new met has reoccurred and there is some growth elsewhere that would not be a candidate for steretactic radiosurgery. I'd appreciate any feedback. thanks so much! Brandie
  9. Brandie721

    decadron

    Hi there, My Mom also had leg weakness while on and after decadron. She has been on and off it a while and will be going back on it again shortly. The weakness did resolve - it just takes a while. I think the decadron can impact your muscles pretty severely, which is why they try to get you on and off pretty quickly. At any rate, stay hopeful - the weakness should resolve in a reasonable amount of time. Mom could deal with the weakness because we were both so relieved it wasn't because of some larger underlying problem. Brandie
  10. I agree, Liz. Now that cancer has once again been brought to the forefront of the news, emailing and encouraging increased funding for research certainly cannot hurt! And not to get into a political debate, but the Bush Administration has seen consistent cuts in cancer research funding (since 2003), specifically to the NCI. For FY 2008, there is a proposed $11 Million cut, I believe. http://www.bloomberg.com/apps/news?pid= ... refer=news Brandie
  11. Hi all, My Mom mentioned to me this morning that it would be helpful to speak to someone else going through a similar course as she. She's stage IV with mets and is 66 years old. She lives in RI, but is currently in Boston with me. Would anyone want to speak by phone with her? thanks in advance. Brandie
  12. Shannygirl - Hi. I understand where you are coming from. My Mom is in the same situation. Middle Class - not rich enough to pay out of pocket and not poor enough for Medicaid. We are about to run into a problem where she will run out of the skilled nursing facility benefit she gets via Medicare. She has had WBR and stereotactic radiosurgery. I have to say that mentally she is fairly close to being completely gone. She cannot complete the simplest of tasks by herself. It is the most horrible, painful thing to watch. it is sad that divorce from my father is the only option for her as well. I hope you find out some useful info from social security. Perhaps there is still an alternative. take care, Brandie
  13. I echo Mass General in Boston. My Mom is Stage IV and her medical oncologist agreed to be agressive where other Med Oncs didn't seem so interested. Brandie
  14. Hi - My Mom has been diagnosed with this. I've read all the info out there. I'd like to know if anyone has dealt with this diagnosis and treatment (intrathecal chemo). Drugs used, etc. It seems there are really no options and little success. Thank you, Brandie
  15. Hi everyone - Need your input once again. My Mom presented with facial paralysis on Friday night. Took her to ER. Ct scan and MRI ruled out any new brain mets. (She had just had stereotactic radiosurgery on Wed). Stroke is ruled out. Hemmoraging is ruled out. Her muscle strength is good. The most worrisome thing is she has some mental confusion. I don't know if that is from WBR?? They are doing a spinal tap this afternoon to check for cancer cells in the cerebro-spinal fluid. This is what I fear. Has anyone had experience with this? Thanks, Brandie
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