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Haleystitan

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  1. All of your kind words and advise are always so incredibly helpful and once again I can't tell you how much I appreciate you all being just a keyboard away. I am trying to understand the medications because I do realize she is on so many and I remember her being similar to how she is now when she was on the Decadron the first time. Unfortunately her prognosis seems to deteriorate with every person she sees and is now being told she also has breast cancer and days to weeks to live. At this point my family and I have decided to take what she says in stride and try to remember the woman she was as she doesn't have many normal moments anymore. Her frontal brain tumor has returned, though not nearly as large as before. This too may cause emotional and mood issues if not adding to the ones she's already experiencing. The doctor she saw recently recommended she request hospice, a family friend has told her that once she chooses hospice she can't change her mind and request treatment. Is this true? Basically due to mom's liver condition the doctor doesn't feel that chemo therapy could be metabolized through the kidney therefore making chemo more of a risk than a benefit. With that being said the doctor has said she has no other options.
  2. Hi all. I've been wanting to stop in and say hi for a few weeks now and things went seriously down hill fast for mom and I. I truly don't know where I left off, but mom's story now is bleak. We still have hope but the doctor's and her body don't seem to have so much hope. She now has metastasis all throughout her body, including her kidney, liver, clavical and back in her brain. She also may now have breast cancer! The good news is we are in Chicago with the rest of her family. Before we were able to get here though she had another stop in the hospital because the tumors on her liver had caused an internal bleed and she had to have something in the liver embolized. I apologize if my terminology is off. She was doing much better but in the past few days things are looking down again. Her legs and ankles are incredible swollen. There are so many large tumors on her liver the reports don't say anything other than numerous and her oncologist is fearing that her liver is giving out on her. If that is the case she will receive no chemotherapy. I am sad because I wanted her to get to Chicago sooner for treatment and she just couldn't come to peace with leaving Sacramento. Now in just weeks we are faced with this horrible news. She is back on her Decadron because of the tumors still being there after radiation. Good news there is her headaches haven't returned and her pain seems to be focused on her stomach, gut, abdomen areas. We've been fighting a lot lately. It upsets me a lot, she seems to be very negative unless she's talking to someone she's trying to impress like her parents. She fights with my sister and I on a regular basis, is this normal? I've asked her to see a therapist she says she doesn't need to, I've recommended a church she says she will, I really don't know what else to do. I don't want her to pass and us not be on good terms, but to be honest we are on really horrible terms now. There's probably a lot that goes along with that but I worry that we won't resolve our issues before she passes. You guys were all so helpful at the beginning of this journey, I was having trouble logging on for a while, hopefully I've got i all figured out now! I have a feeling I'm going to be in need of your wisdom again. I hope peace and wellness has touched everyone else out there.
  3. Lillee: I'm sorry to hear about your father and what you are going through. I do want to say though my mother has recently been diagnosed and had a doctor look at her and tell her she has 2 weeks to 1 year to live, she lost hope for a day or so until I took her to another doctor. That doctor told her she's already made it 2 weeks and from what she saw for mom's fight she certainly expects more than a year. It's amazing what a different opinion can bring, it all depends on the fight your dad is willing to continue to put out. Good luck, my prayers are with your father, you and your family.
  4. I can't tell you how much you guys help when I try to convince her of things She says she thinks you're all right, no cold turkey on the caffeine, today she had a pepsi and this evening no headache!!!!! She's also been complaining a lot about a pain at the lower left side of her chest. Her radiologist said it was probably regurge, she's been eating lots of tomato sauces, pizza at 9:30 am, spaghetti, raviolis, etc. So Ned thank you, thank you, thank you, I've been telling her marinara's give me heartburn and I'm not battling half what she is! And hey, we are of the same blood right So, she says tomorrow she's eating no red sauce or tomatos to see if we're all right! Thanks again, I'll keep you all informed. Oh, and a little more good news, only 5 more days of radiation. No chemo plan yet, the doctors are waiting to see the brain tumors defeated first.
  5. Welcome Christie: I can't tell you how amazing the people on this site are. They are comforting and enlightening. I pray for good and speedy news for your husbands tests. I'm sorry your family has to endure such a painful time. My thoughts and prayers will be with you and your family. I look forward to hearing more about your husbands progress.
  6. Mom's been doing better than a week ago but we're experiencing some new things, or at least she's discussing new things with me. She keeps saying her bones hurt, at first this sounded strange to me and I thought she may have been semi dilusional, I researched it and it seems this is all very common. The only thing I didn't seem to find were any suggestions on how to make the bones feel less in pain? Any suggestions? Also, she's stopped smoking, thank god, but she's also been told she should cut back on soda. She used to smoke 1-2 packs of cigarettes a day and drank 2-4 pepsi's a day plus 2-4 cups of coffee. Today was her first day on the second step down of nicotine patches, it was also her first day with only half a pepsi, she has a horrible headache. We've tried tylenol which is what her doctor recommended, but she's still in so much pain. I've tried giving her an ice pack, a heat pack, she won't relax in the bath, I'm just not sure what else to do? I've made her some tea which I figure has caffeine, any one else have any issues like this, is it just the radiation and cancer or should we be allowing her to drink more caffeine? I get the feeling she's being asked to do soooo much right now, most people couldn't endure stopping smoking and drinking soda at one time much less adding radiation and cancer to the mix.
  7. Hi Randy and all others: Sorry I missed you all, I was looking forward to chatting n giving you all updates. I will try earlier next week. Just on a good note, the reason I was late was cause mom was feeling so well we decided to cook dinner together. Bummer now she's exhausted, in pain and can't sleep. I've noticed a pattern like this, it's either full of energy and ready to go or dead tired and ready to pass out. I've learned to really appreciate the good and understand the bad. Again, sorry I missed you all, my prayers are with you and your families, good night and have an absolutely wonderful week.
  8. I am utterly amazed and almost speechless. Mom and I have so many friends and family that care and check up on us. But all of you and your kind words are absolutely a god send. Thank you and I will most definitely stay in touch. I'm trying to familiarize myself with the site, so hopefully i did this correct Thanks again, my prayers are with all of you and your families.
  9. I am the 25 year old daughter of my 48 year old mother who was diagnosed two weeks ago with stage IV non small cell carcinoma. It started with a trip to the Emergency Room for headaches that had been ongoing and worsening for about two weeks. In that visit the xrays found two tumors in her brain. The doctors performed a crainiotomy to the frontal lobe to reduce the swelling and pressure and relieve her of the worst pain. The neurological doctors have done an amazing job and have made her almost back to the mother she was prior to her headaches. Now she is going to radiation for the full brain hopefully to get rid of the remaining tumor. If the radiation does not work as hoped she will either receive a gamma knife procedure or another brain surgery. After the surgery mom has been prescribed Dexamethasone (steroid) for the swelling to the brain, Darvaset (pain killer) for pain of the surgery and head aches from the remaining tumor, Colace (stool softner), Keppra (anti seizure meds) not that she has had any but as a prevention and Pepcid for acid relief because of the steroids. She can't see very well out of her right eye, she actually is having poor vision all around, but the right side is much worse. Her headaches are nothing in comparison to the original headaches though. She still has slightly slurred speach, she doesn't seem to control her thoughts as she speaks out loud about absolutely anything, she stumbles a little when she walks but other than that she is doing incredible. I think this is the reason I am so confused. Once the original tumor was removed from the brain a biopsy was performed and the doctors have said it's marking, although not clearly, is lung cancer. Since the lung cancer has spread to the brain it makes it stage IV. We just saw her lung oncologist for the first time and he really scared us. He says all he can do is treat the cancer with chemo and that it won't treat the cancer only prolong life. Mom is fighting and strong but this doctor said her life expectancy is only 2 weeks to a year. We are very confused as a family because she is so healthy other than this hidden disease. He says he wants to perform a PET scan, so I assume this is a more thorough test to see if there is infact more cancer throughout her body. Also he says at our next visit, after radiation is complete, he will have a port put into her chest for chemo, blood tests and ivs. I am also trying to jump through hoops for the state to get good healthcare for my mother becausec she was and is uninsured. I am working with Dept of Health and Human Svs to get Medi Cal established, that is an incredible task in itself. I am 25 yrs old, fortunately I don't have children to care for so mom is my first and foremost concern. I've moved her into my home and have taken FMLA for the next 6 weeks to be with her and care for her as she is not even allowed to drive. So I am also working with the state for assistance for myself for these few weeks, months or years? I'm sure there is more, all I know is that I greatly appreciate a site like this. Mom is too tired to attend counseling or support groups at the hospital. We both feel like we spend 90% of our days there anyway. Thank you ahead of time for all the help.
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