Mskim

Eppie put my thoughts to words... and I want to add that I often feel guilt for having the feelings that I have as well... especially after an ANGRY day or a day when I feel kind of shocked and heartbroken and wrecked all over again. I think, well, I have already felt like this so I don't have a right to do it again, but I am learning that I DO HAVE A RIGHT TO MY FEELINGS!!! I am learning to take the time to experience them which sound so cliche and DR PHILL-ISH but it helps. Of course my husband has to ride the rollercoaster with me so that can be tough. Another thing that helps me is to 'schedule' a kids free day to just go to mom's and not do things for her, no cleaning or errands or necessities, I just sit with her. I have had some precious moments with this woman I love so dearly, this woman who never in a million years offered up a free 'I LOVE YOU' without the prompt of me saying it first, now sits with me and snuggles on the couch and has hugged me and told me she loves me just out of the blue. It makes the days that are so emotionally draining feel like a trade off, like yeah today my heart feels like it is being ripped out, but yesterday my mom & I actually snuggled on the couch watching I love Lucy and talking about when she was a girl. Love freely and leave nothing left unsaid. GOOD LORD DID I JUST WRITE ALL THAT? lol... got a little carried away there... Hugs, Kim

Welcome home, it sounds like you had a lovely visit and I bet your dad was so grateful for the help. I know my mom gets so frusterated when she can't do things herself and is so happy to be helped especially when it is done with love. Hugs, Kim

I'm so sorry. I try to come up with all kind of solutions myself to the point where my step dad says I need to stop reading about treatments and implies I am some know it all.. I think is just shows I am not ready to give up or give in. I am praying for your husbands health and for some peace in your heart. Kim

It makes me so frusterated to that the side effects of WBR were minimized by moms doctors. I want to stay as positive as I can here but after my 10 rounds in July of 05 my mom was simply not the same woman. Aside from SEVERE short term memory loss she became very childlike and self indulgent (can't blame her there) She was extrememly confused and had a hard time concentrating on anything. My mom only took decadron the first few weeks and that certainly made thing worse and when she stopped taking it she became less a little less emotional and argumentative. She was unable to read and disliked being in a room with more than one or two people because all of the conversation confused and frusterated her. Littel things like being unable to knit because the counting was confusing and all this from and executive at our local Houseing Authority! We were no longer able to discuss financial matters with her and discussing alternative medical treatments was out of the question. Not because she was apposed to it but because it was too much for her to think about. SHe began shaking and jerking and ticking. SHe was no longer able to drive and had to retire 2 years short of full benefits. On a happy note, in the last month or so I feel that I am getting her back. Her eyes seem more clear and I can see her in there! Her short term memory is still not good but we write lots of notes. I know that every case is different, which is really an understatement. I have heard of people having WBR and the only side effect was hair loss so I believe my moms side effects were extreme. I just wish we could have been a little more prepared. OF course how do we prepare for any of this? I am so proud of my mom and grateful she is persuing treatment and enduring everything that comes with it. If she had know all that would happen I am not sure she would have taken the same path but I am grateful she is. I would rather have her with me, changed but esentially still her, than not have her at all. Hugs and prayers, Kim

I know it has been forever since I posted Lori, but I have thought of you often over the months (along with so many others here) and I am so sorry to hear of your mom's didease progression. I have been so wrapped up in my family that i expect to come in here and everything be the same. I am so sorry for your broken heart and I am keeping you in my prayers. Kim

The same thing has happened to my mom, although they couldn;t do chemo and rads at the same time as she had just finished rads to her brain. A delay in chemo makes me think 'it' will have a chance to grow and prolongs her treatment and I am very impatient! We were hoping for her to be done by Christmas and our gift would be that everything has disappeared, but it looks like treament will go well into 2006 with the delays. One thing I am learning about much of this is that it is out of my hands, I am trying to concentrate more on today and mom and the rest of my family, although I can't say I am good at it!! They finally put my om on Neulasta, which is kind of like procrit I guess. I hope this break for your mom helps her to gain the strength back to get her through her next round. Hugs and prayers, kim

I am so sorry to hear about your Gramma... It is so difficult for this to be out of your hands. My mom is stage 4, non small cell with mets (has spread to) to her brain. This is known to be treatable, but not curable. They could fight to extend her life or they could treat her symptoms to make her comfortable. I know when we all went to the oncologist with my mom, he took her aside away from the rest of us and asked her if this treatment was her choice or if we were making the choice for her. As much as you can suggest for her to seek antoher opinion or treatment, it may be that this is what she has chosen and as you said, if she is sugar coating it for you, may not want to hurt you by telling you the path she has chosen. My hope for you is that you can spend time with your Gramma loving her as it sounds like you do love her so much. I hope that you can all feel some peace in whatever decisions your Gramma makes. My prayers are with you and your family. kim

I was so frusterated. I knew she was having a day when I went to her house and she asked me not to act mad. Apparently I didn't have a happy enough look on my face and she was acting paranoid. I felt like telling her if this was how she was going to be today I'll go home and we can start again the next day but I held back, and tried not to notice how sensitive she was. Anyway, we were going to the comissary grocery shopping (her idea) and she insited on driving. She was shaking and jerking and would drive slow and then fast and slam on her brakes. A few times I braced myself becasue she was drifting towards the curb. I was a bit scared. I suggested I drive home. By the time we left she was way worse and she again insisted on driving. This is with 2 of my kids in the car as well. I felt like a guinea pig when I asked her why she insisted on driving she said she wanted to see if she could. Here is my problem, if I take a hard line with her and insist on driving she get mad or cries. In some ways I feel she is manipulating me and knows it but on the other hand, maybe she doesn't know what she is doing. I have a hard time believing that. What do I do? I know she is scared of becoming dependant and I have tried to convince her this is temporary but that doesn't matter to her. I asked my husband and he said it's not like she will disown me, but I can see it coming up whenever we go somewhere and she wants to drive. I can only come up with some many excuses to take my car. Sorry for the book. ;o) Kim

My mom went camping this weekend and I was with her before she left and she was barely able to walk. SHe threw herself from one place to another. It is making me crazy that she goes away when she feels so awful but how can we deny her what makes her happy. SHe has started Neulasta (SP?) but it takes 6 weeks to work. DOes anyone know what kind of improvement we can expect? SHe is so different than the woman I knew. The rads to her head really took a toll and it is so sad somedays, she is so child like. She jerks and shakes on both sides now and it gets way worse when she is tired (when is she not tired?) I wish I know if there was some hope of her personality returning. I just wait and pray. Kim

Hi, My name is Kim. I am a 35 yo stay at home mom of 3. My 57 year old mom ELAINE was dignosed with nscl with mets to brain in July. This comes on the heels of my Dad getting killed in a motorcycle accident just 2 years ago. My life has certainly gone from 'charmed' to 'hell' in a very short time. I grapple with where it is best to spend my time, I spend as much as I can with her and try not to neglect my home and family but it is so hard to leave her. My Step Dad works... has to work to save his sanity. So I hate for her to be alone during the day. Some days she is so weak she can barely walk to the bathroom and she shakes and jerks uncontrollably. Other days (few and far between) she is a glimps of my mom, cooking or shopping like we used to but it is still not her. We have been comparing my mom to a 6 year old with a drivers license. She is there yet she isn't. She is trying so hard to hang on to her independance, driving when I know she shouldn't and even camping with her friends without my step dad to care for her. It makes me crazy to know she is away, too far for cell phone service and with people who may not know what to do to help her. On the other hand I want her to do whatever gives her peace. I wish I could say do whatever makes her happy but she feels no joy. I know the people she spends time with will make sure she is safe just as I would, maybe I am jealous, maybe because the time I spend with her is to help her with basic needs instead of fun things like sitting around a campfire. She also tends to be pretty mean to me and my step dad and I when it suits her. She hates to take anything to help her sleep or stop shaking because they make her drowsey and she despises having to take antidepressants. SHe blames us for making her take these drugs even though it helps her. Her personality has changed so much with treatment and drugs. I have always been very close to my mom, never living more than a few miles from her and talking to her almost daily. I have adopted these things to apply to my life: ONe day at a time, I'm doing the best I can, and one of my favorite phrases latley is "thats not helpful right now." One day at a time is for when I look too far ahead at my daughters wedding or my sons graduation and knowing in my heart she will not share it with me. Who will be left to answer the questions about the past and who will be there to show me how to do things like gramma showed her? I am doing the best I can is for those I disappoint if I am late or forget or can't help in some way that I used to be able to. Last but not least is THATS NOT HELPFUL is for those who say things like "maybe the treatment is worse than dying" and "you know, if you smoke for 40 years it's bound to happen" and all of the other things we all hear all the time. This doesn't mean I am well adjusted, I have many Zanax moments but whatever gets you through the day right? Thanks for having me here.