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minnie

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  1. minnie

    My mom died

    Thank you all for respecting my feelings, or lack of knowledge about what I feel. I spoke to my sister and she feels like what both her and I feel just might be 'normal.' (What is normal anyway?) After mom was diagnosed with brain mets, we both mourned the loss of our mother - at least her mental and physical characteristics - but she was still mom. But yet I still feel like I have not 'properly' grieved. How can things be so ironic? Thanks again. Minnie
  2. minnie

    My mom died

    My mother died June 13, 2005. I can't even explain how I feel. I got a call from my sister on May 20 that mom couldn't breathe well and was going to ER. As, these hospital visits happen often, I asked my sister if I should come home. She said yes. I flew out the next day. My mother was already swollen from extended steroid use. (She had brain mets that had not changed much in over 20 months even with use of Temodar, gamma knife and other WBR.) She was preparing for neurosurgery when two more spots were found on her lung after being clear for over 2 years. She was admitted to hospital. She had a lot of trouble digesting food. Her stomach was very extended. GI doc says it had basically shut down. About 2 weeks into hospital stay after bronchoscopy, my mother began hallucinating and talking nonsense and went into respiratory distress. Was rushed to ICU and placed on ventilator. My mother never told my sister, brother or me what she wanted in a case like this. When we tried, she just told us that she had a husband who knew. She never did a living will or advance directives. After three tries to remove her from the ventilator, she finally was able to stay off. She made great progress. The cancer was, however, in her lymph node system. She still wanted to continue chemo. Her oncologist also recommended she finalize her plans. He asked her about life support, etc. ad she said she did not want it. He drew up modified DNR papers. She was not sure about IV therapy. After another week in ICU, my mother was moved to the cardio pulmonary unit. She was doing better. Ordering me around, telling me what to do. Laughing, joking, it was almost as if I had her back again. I spent the night with her, and the next night my sister stayed. It was the first night in over three weeks that I did not spend the night at the hospital. The phone rang at about 1 a.m. and my sister was telling that us that my mom was being rushed to ICU again. My father and I rushed to the hospital and made sure that she was not put on a ventilator again. I could hear her screaming in the ICU waiting room, and went in to see what was going on. She was fighting the nurses and trying to pull off all the sensors and IVs from her body. The nurses were still trying to draw blood for blood gas levels and she was telling them to stop. I told my dad that I thought she was trying to tell us to stop. She said that he wasn't doing anything. She told me to get her a cup of tea and I made it for her, She took two sips and told me she loved her and never spoke to me again. That day, I told my father that me and my siblings trusted that he would do the right thing according to her wishes. He asked the nurses to call her oncologist. He told the onc that he wanted all life-saving measures stopped and to have her placed in hospice. My brother, sister, dad and I were all there in the room when they disconnected her IVs. She looked relieved. She didn't fight at all. We wanted to take her home, but the onc didn't think she would make the trip home. So we moved her to a private room. She hung on for four days. My sister and I realized that she began to push our hands away. My sister and I talked and decided that she probably wanted to spare us the anguish of watching her die. We left the hospital around 9:30 p.m. June 12. My mother died at 12:02 a.m. June 13. We knew when we left that we would not see her alive again. It was no surprise when my dad came home to tell me. The week of the funeral was a blur. I didn't really cry until the dirt was poured over my mother's grave. I'm told I should feel angry, sad, and go through a bunch of emotions, but I don't know how I feel. All I can remember is that I had a great mother, and I hope to be just half as good a mother as she has been to me my brother and sister. Minnie
  3. My sister just told me today that my mom has knots in her stomach and leg. She doesn't know what they look like, as my dad told her today in a conversation before she left for work. Has anyone had this problem? If so, what is this a sign of? Mom already has brain mets, I just can't imagine anything worse. Minnie
  4. minnie

    PET Results

    I'm so gald that you all have had the wonderful news! I just want you to now that I think the suggestion of "preventative chemo" is a great idea. My mother was supposed to be on a regimen of the same. She elected not to do so. She was stage 3b and inoperable, as well. She was fine for about a year, and then brain mets were found. She often wonders what would have happened had she done the chemo even after scans were clear. Good luck to you and your husband. Remember, everyone is different and no one has the exact same response to treatment, your husband just might have the miracle we all hope for. Minnie
  5. Last night, I called my parents' house. No one answered the phone. A bit later I was on the phone with a friend of mine, and I got a call from my parents' home. (Caller ID is wonderful!) So, I just assumed it was my dad becuase he usually will call me back. But to my surprise it was my mom!!! We had a really 'normal' (non-cancer) conversation. Funny thing is, I was doing some online research trying to find out about how age alters people's memories. Well, I was getting frustrated and telling her about it, how I really didn't want to write this paper. She proceeds to chastise me. Ha-Ha! Never in my life have I enjoyed getting put in my place by my mother like last night! So, after that, she asks me what I'm looking up. I say, memories and cognitive whatever, brain and aging, etc. She says, why don't you just type in memory and old people? I did and I got a ton of info! I told her it was grad school and academia that makes people lose brain function, not tumors. Just wanted to share that. It was just a tiny moment back into how she used to be. Minnie
  6. minnie

    WHY???!!???

    Mom was in the hospital for 2 weeks. I just got back to Florida from Texas. Several months ago, she was diagnosed with brain mets. After completeing WBR and Temador, she developed a blood clot in her leg. It was treated with Coumadin. Then suddenly, mom couldn't walk, couldn't talk, couldn't even feed herself. She was admitted to hospital and it was discovered that she had an edema. And on top of all this, the WBR and Temador didn't work. Scan done in the hospital showed that the 2 smaller brian mets were still there and the larger one was where the edema was occurring. WHY? I don't understand. She vomited everyday in the hospital. Nothing they gave her helped. Now she is at home and my family is concerned about all the medication she's taking. We picked up 15 prescriptions. Is this amount of meds "normal." She was supposed to have gamma knife, but now that's put on hold until her condition improves. But I can tell that she's losing faith. She keeps telling us that she's sick and tired of being sick and tired. I'm at my wits end here. After two years, I've finally made an appointment to talk to a "talking doctor." I really don't know what to do. As a grad student, I live on a fixed income, and I'm nearly broke from flying home to see mom. I know it seems trivial, but it gets even more depressing when I check the mail and every day there is another collection notice. I can barely stay afloat financially. And to top it all of, I started smoking again!! What do I do? Minnie.
  7. I know how you feel. I'm about 800 miles away from my mother who has been dealing with LC for over 2 years. I'd recently moved from TX to Florida to start grad school when I found out about my mother. I finshed the first year and went back home. After a semester at home, she had no evidence of disease, and I came back to school. Now, she has mets to brain, just completed Temodar and WBR and is in the process of getting ready to undergo Gamma Knife. I don't know what to do. I want to go home again, but she doesn't want me to. She wants me to complete what I started here. She wants to be around to celebrate. I didn't feel so awfully terrible at first about coming back becuase my dad is with her and is a wonderful caregiver, and my younger sister who is getting married in November still lives at home. (Though I'm worried abot her, too. Planning a wedding alone, working full-time and helping with my mother, she has recently been diagnosed with anxiety disorder.) It's just that now, my mom's in some state of depression. My sister says she cries alot and sleeps more than 20 hours a day. I'm really worried. I want to go home, but then again, I also want to respect my mother's wishes. It's so hard. But, I call everyday, two, three even four times a day. (Thank goodness for free nights/weekends with cell phone companies!) I send cards and letters. I push her, just like she has pushed me through my life. But right now, nothing is working. It's good that you have someone to tell you how your dad is doing. I know my mom often tries to sugarcoat things or just "forgets" to tell me things at all. My father keeps me pretty up to date on things. And, since I have gone home so much, I have devloped a relationship with her onc, as well as the nurses in the office. Whenever I have the slightest feeling that something is wrong, I just call the onc and let them know about certain aches/pains she has, etc. They have been really wonderful at following up on this. Being able to call her onc has been a comfort in a way. It also lets her know that I do care. That I notice when things aren't right, even when I don't see her, I can hear when things are right or wrong. If possible, I would recommend going to visit your dad during the time that he is to visit his primary onc or other physician. Let them know who you are, that you are far away, that you care. I was amazed when I went with my mother to her visits how many people go alone or without any support other than that from a caregiver. That must be very hard. I think it pleases doctors to know that their patients have a strong support system. Sorry about the ramble. I was just having a difficult time tonight when I saw this post. I haven't talked to my mother in 3 days because she's asleep everytime I call. That's pretty much a record for us. Many blessings to you and your family. Minnie
  8. Great news on your mom. I hope she continues to be in good spirits. Take care of yourself, too. Minnie
  9. Hello all. As if there isn't enough turmoil in my life with Hurricane Frances roaring in to Florida, I just found out that my mom is going to have gamma knife surgery. I don't know all the specifics yet, but I was just wondering how many people have had this procedure done and if you considered it successful? Any information will help tremendously. Thanks, Minnie
  10. Thanks so much for the words of encouragement. I must say that I have not tried to get my mother to talk to me about the possibility of death. Maybe I'm the one with my head in the sand right now. I was reading a pamphlet that her onc gave me and one of the suggestions for the families of cancer patients was to treat them as normally as possible. So, that's what I try to do. Maybe that in itself is denial. I don't know. My sister and I went to a local cancer center, not where my mother is receiving treatment, and picked up some info for cancer support groups. We gave them to her. She said thanks, but nothing else. I did notice that she had posted a few on the fridge. At least she didn't throw them all away. My father even told her that he would go with her to the one for cancer patients and their families. We'll see what happens. As much as I can feel for her, care for her, love her, I can not understand the feelings that she is feeling. I want her to be able to talk to people that do. And yes, the feelings get worse at night. I'm single and so most of the time I'm alone at night. It is sometimes so overwhelming. My eyes are puffy this morning from crying so much last night. The things I put myself through. The thoughts that creep into my head, especially the what ifs. What if I want to share something with my mom and she's not here. What if I finally get married and she's not here. She always said she was going to dance all night at my wedding ... even if she was 90 years old. It's a running joke with her as I have broken off one engagement and have not had a serious relationship in years. I think of how she would make a wonderful grandmother and how that opportunity might not be a reality for her. I could go on and on. I am thankful and blessed that I still have both my parents, and they are still together. That my dad loves my mom very much. I can't possibly imagine what he feels. He himself is not well, but he does whatever it takes to take her to treatment, do the grocery shopping and bills, and he even cooks for her every single day. We did have a moment of laughter when I told my dad while I was home that I didn't even know he knew how to cook! When I was a child, he never cooked. There was never meals cooked every day of the week. I told them I was jealous and just needed to move back home so I could enjoy dinner everyday. They both laughed. It was nice to see them laugh again. Don't get me wrong, our family has had it's dysfunctional moments through the years, but I can see, at least we knew we were sometimes dysfunctional. Oh well, thanks again. I'll be heading home one more time before my sister's wedding. Though it will only be for a weekend. I hope to see my mother doing a little better. I must go, and get ready for class. Thanks again for letting me vent. Minnie
  11. My heart is torn into pieces. I go out to work/class and put on a smile and laugh and I'm the same person that everybody knows me as. But I can't escape what I feel when I'm alone at home. I just left my mother about 3 days ago, and the mother that I love is not the same. She's going through WBR and Temodar. She's also on anti-seizure and anti-inflammatroy medication. She is in a constant state of fogginess. She sleeps every other hour of the day. Is this normal? I used to talk on the phone with my mom for hours, now it's good if she can manage 10 minutes before she falls asleep on the phone. I'm at a loss. I don't know how I would manage without her. She means everything to me. She is the one that has told me since I was a child that I could be or do anything that I wanted to be or do. Oh God, why does this happen? I just don't understand. She was doing so well, and then suddenly so awful. She doesn't talk to me about death, but I know she thinks about it. She talks to my father, and I in turn listen to him and his feelings. It hurts so much when you see your father cry. When you see him have to go out and try to find side-by-side burial plots because that's what she has asked him to do. I tried my hardest when I was home not to break down in front of her, so most of my crying was done in the shower. I tried my hardest to help my sister plan her wedding. And it hurts when my little sister prays that my mom will live to see at least one of her children get married. I found photos of me and my mom when I was little and I put them on my fridge. I just want to see her smiling as she was in the photos. Sometimes I feel like I'm just torturing myself. If I could take the cancer for her, I would. I'm so sorry for the rant, but I just needed to get this out. By the way, I'm just wondering what kind of outcome/side effects people have had with Temodar. Please let me know. Thanks, Minnie
  12. My mom had the same experience. I agree with those about the Benadryl. The onc gave her Bendryl and an anti-nausea med before the Taxotere from then on. All worked out well after that. Minnie
  13. The patch should work at the right dosage. It took my mom about three tries before we found the right one. The first one was too weak. The second one too strong. It made her sleep all day and lose her balance and fall. Eventually, we found a middle ground that worked well. It was just trial and error to see what dosage finally worked. She was still drowsy, but that is just one of the more common side effects. Her onc said it takes about 24 hours for the patch to take full effect. Minnie
  14. Insurance approved the medication for my mom, though it was still terribly expensive. She began whole brain radiation Tuesday. As for second opinions, she has seen a different radiologist and he agrees with the current course of treatment. I really appreciate the honesty of the doctors. They are not painting a rosy picture nor are they painting a dismal one. They are treating her aggressively and telling us that we'll have to see how this treatment goes. I suppose I'm thankful really that they didn't put a number on the amount of time that my omther has to live. After all, statistics show she's not supposed to even be here now. I just hope that one again she can defy those statistics. Thanks to all for the posts. Minnie
  15. I've been home now for a few days and this is the first time I have had a chance to get to the computer. Thanks so much for the encouraging words. We're going to see the radiologist in the morning. I thought radiation would start last week, but now there's some insurance issues. Doc wants her to have radiation and oral chemo, but insurance might not pay for the oral chemo. I still don't know what the name of the med is yet. I hope to find out more when I go with my mother to her appointment in the morning. I really hope that all works out well. My sister's getting married in November and we were all pretty excited about it. I just hate how LC just takes the zest out of life, out of everything that we hope and dream for. I'll be sure to keep you all posted on her progress. And thanks again so much for the kind words. Minnie
  16. Finally got the results from my mother's brain MRI. She has three tumors on the left side of her brain. This is devastating news. She was doing so well for over a year. She was exercising, cooking, living life as normal. She begins radiation and oral chemotherapy tomorrow. I was just planning on going home for three weeks. Just in time. I leave tomorrow. I am so afraid. I just don't understand how this can sneak up so quickly. She had a chest X-ray a few months ago and her lungs were clear. There was nothing in her lungs. How can this be? I'm just really distressed over this. I really hoped that it would be something less serious. Why does this have to happen? Minnie
  17. Thanks so much. Not that any physical condition is better than another, but I hope and pray she is OK and that whatever is causing her problems is "mild." Bless you all!
  18. It's been a REALLY LONG TIME since I posted. It's nice to see some people still here! After almost a year with no sign of cancer, my mother who was stage 3B, is now having strange symtpoms. She recently had two episodes where her mouth and face became numb and the last one was accompanied by facial twitching. Both times, these episodes lasted less than 5 minutes. She wouldn't call her onc, so I did. I told the PA about her episodes and her other problems, including memory issues and slurred speech. My mother is constantly repeating herself. She'll tell me something in one converastion and then tell me again 10 minutes later as if she never said it before. After she found out that I called her doctor, she confessed that she feels like she has to concentrate on her speech when she talks or the words don't come out right. I had noticed in previous conversations that her speech was a little slurred, as if her tongue was heavy or something. I just thought she was sleepy and overlooked it. I'm so afraid that this could be a sign of brain mets. Maybe a stroke, I don't know. She's going in for a brain MRI on Friday. I'd like to know what kind of symptoms occur with brain mets. Thanks.
  19. Thanks for all the wonderful words of encouragement. You never realize that someone else's story can bring such encouragement to others. I have been trying to get my mother to post her story. I know what I felt while she battled cancer, chemo, radiation, but I can not imagine what she felt. The hopelessness, the longing question of "why me" etc. I have gotten a lot of questions concerning her chemo cocktails and radiation procedure. I can't be sure of the order since for most of her treatment I was in Florida and she was in Texas. (Most of my info was coming second-hand via my very tired dad). But, this I promise, if I can't get her to post it, I'll at least have her e-mail it to me so I can post it to you all. Many blessings to all of you and your families/friends. Minnie
  20. WOW! Once again, it has been a terribly long time since I posted. 2003 was full of ups and downs, but my family and I ended it on one of those ups that we hope to be riding for a LONG time! The last time I was here, my mother was waiting on the results of CT scans. The results came back and onc said that there was still a spot on her lower lung and her mediastinum. In addition, a chest X-ray showed fluid around her heart. So, onc ordered a PET scan. We got the results a day before Thanksgiving that her PET scans were normal! So I asked onc, "What do you mean normal? Normal like a normal person or normal for a person with cancer?" He said," There are no signs of malignant cancer." And he handed me her results and interpreted them for me. Her blood tests were perfect, too. So he said, "I think I'm done with you!!" Which is great, we just hate not having to visit him anymore (yea right) and I'm sure the nurses will miss the wonderful cakes that my mom used to make for them, but it's OK! He and his staff were wonderful! Onc decided not to do any "maintenance chemo" and wants to see her every 3 months, as does her pulmonologist. When the pulmonologist saw her scans, all he could say was "Amazing!" Anyway, she still has her portacath, just in case, but onc said he might remove it this summer, no later than the fall. So, for now, she still has to go in for maintenance on the portacath. As for the fluid around her heart, onc and pulmonologist seem to think it is a very delayed reaction to the chemotherapy. So, we wait and see. So, after taking a semester off, I'm back in the grind again, hoping to finish up my grad program in two more semesters. Brief history: -Mom diagnosed with stage 3B adenocarcinoma Sept. 2002 (inoperable) -Tried Taxol, Gemzar, and Carboplatin (Had to eventually take drug cocktail to avoid severe reaction) -Radiation (5 days a week for 6 weeks) - Hospitalized three times (once at first diagnosis, then for reaction to chemo, and lastly for severe weight loss) -Surgery to repair damage from severe radiation esophagitis (could not eat at all, lost about 20 pounds in 1 month) So there is hope for all. My prayers and thoughts are with all of you. Minnie
  21. Well, once again, it's been too long since I posted. I'm back at home in TX to spend time with mom. Took semester off. We are waiting on the results of CAT scan. It's her first real "post radiation and chemo" scans. Her last ones were in June when she was hospitalized for severe esophagitis. Onc said that chemo and rad were probably still in body. Tumor had shrank at that point and he could not tell what was tumor and what was scar tissue. We're also waiting for the results of a barium test to see if her esophagus has closed more since surgery in June. She is still having a little difficulty eating, but not enough to stop her from eating!!! YEA! Onc said there's a possibility that esophagus will need to be stretched out again. So, now we wait. I jump every time the phone rings. I hope the news is good, or at least as good as it was in June. Please keep my mom in your thoughts and prayers, as you all are in mine. Minnie Mom diagnosed w/Adenocarcinoma Stage 3B Sept. 2002
  22. The swallowing difficulty is very common. However, I would keep an eye on it. Five weeks after ending radiation, my mother still could not eat anything but Jello. None of the prescribed medications to ease the pain when swallowing helped. Neither did aloe vera juice. She also lost about 30 pounds. She had a very severe case of radiation esophagitis and had to have surgery on order to stretch the esophagus. If it gets to the point where it seems just beyond the "expected" pain, please call the doctor. They will sometimes tell you it's "normal", but I don't want anyone to have to go through what my mom did. Minnie Mom diagnosed w/Adenocarcinoma (inoperable) Stage 3B Sept. 2003
  23. It's been a very long time since I have posted here. I just got back home to school/work after spending 7 weeks in Texas with my mom. Things were horrible. From February to May, I had been led to believe that everything with mom was OK. Boy was I shocked when I saw her. I can't even explain the sadness I saw in her eyes. She was giving up, I could tell. She said so, too. She was tired, she didn't want to fight anymore. She never wanted me to see her this way. Over the course of the first three weeks I was home, mom lost about 20 pounds. She wouldn't eat. She said it hurt too bad from the radiation. I kept calling the doctors. They kept telling me it was normal, and they kept prescribing medication that didn't work. Finally, I made her push up her 1 month follow-up after radiation and chemo. She was sick the entire 45-minute drive to the radiologist's office. It hurt me so much to see her like that. I had noticed that mom became sort of a mute when it came to describing what she felt, especially to the doctors. So I began to keep typed lists of problems, side effects, whatever I noticed. I gave it to her radiologist. He read it, put it in her file, called her oncologist and admitted her to the hospital. She cried and cried and cried. The dr kept asking why she didn't tell them just how bad things were. She had no excuse. She just didn't care anymore. Mom's esophagus was nearly closed due to the radiation. It was causing everything she ate, even liquid to build up and eventually come up because the food couldn't pass through the esophagus. She had minor surgery to expand it. We just have to keep an eye on it, because it can close back up again. After 2 1/2 weeks in the hospital, mom came home. She had to have TNP at home and the family was in charge of changing her IV bag everyday. She was so scared of us even doing anything near her portacath, but we did what we had to do. It took about a month for her esophagus to start feeling better again. Even now she has some problems swallowing food. But she's better. Every day is a different day. Some days she's up and some days she's down. I'm taking a semester off to go stay at home with mom and the family. I don't know how I'm going to make it financially, but I don't want to ever regret not spending time with my mom. It's been almost one year since my mom was diagnosed with adenocarcinoma Stage 3B, yet it seems like a hellish eternity. I don't know what to do anymore. I don't know what to say to make her feel better or want to keep trying. I suppose the best thing to do is just follow my heart. Minnie
  24. I'm breathing a sigh of relief. I talked to my mom around noon today. No clots in her lungs or legs. Her doctor really thinks that she had an allergic reaction. No more chemo though. She's in good spirits and using a lot of humor to get her through. Hopefully she gets to go home today. Thanks for the words of support. Minnie
  25. My prayers are with you and your family. I hope the drs. can figure out what has been causing the episodes your mom has been having. Minnie P.S. Thanks for the advice about the "pink lady." Before my mother's own episode today, she did get a chance to ask her oncologist about this and he prescribed something very similar for her.
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