minnie

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

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

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

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

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

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.

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

Great news on your mom. I hope she continues to be in good spirits. Take care of yourself, too. Minnie

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

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

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

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

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

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

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