Kerri Gottlieb

My Mom died at home 2 weeks ago (Feb. 15, 2009). It was really peaceful, like she just forgot to take a breath. Hospice was amazing. Over 300 people came to her wake and funeral. I am in awe of how many people's lives she touched. It was absolutely beautiful and I know she was smiling down at us. I washed and styled her wig the week before she died, gave them her makeup, pictures of her, a description, etc. and they did an amazing job. I even brought tweezers with me in case there was a stray hair or something. LOL Thankfully, she looked so natural and beautiful. If not, she would have come back and haunted me for sure!!! My job as a caretaker is over and I'm finding it difficult to even have the energy to look for a new job. So I am just sending out resumes and really thinking of going back to school to get my Masters, maybe in social work. My Dad and I (Mom's main caregivers) joined a Bereavement Support group through our church that started today. Unlike everyone else who can go back to their lives, it's different for us. For me, I guess I just feel a little lost. But I know it is only temporary. At least I have my husband. I cannot even imagine how my Dad feels. Just wanted to thank you all for the hope and info that you gave to both my Mom and myself for the last year and a 1/2. It really made us feel like we weren't alone and I cannot tell you what a difference it makes when you have HOPE. Without this message board and the people here, we never would have made it through this process. Thanks so very much!

My Mom died at home 2 weeks ago (Feb. 15). It was really peaceful, like she just forgot to take a breath. Hospice was amazing. My job as a caretaker is over and I'm finding it difficult to even have the energy to look for a new job. My Dad and I (Mom's main caregivers) joined a Bereavement Support group through our church that started today. Unlike everyone else who can go back to their lives, it's different for us. For me, I guess I just feel a little lost. But I know it is only temporary. At least I have my husband. I cannot even imagine how my Dad feels. Just wanted to thank you all for the hope and info that you gave to both my Mom and myself for the last year and a 1/2. Without this message board and the people here, we never would have made it through this process.

((((((((Linda))))))))) Are you still in shock??? The first few weeks were the worst for me. I am realizing just how lucky my Mom is that Sloane Kettering is in her insurance network. My sis-in-law is facing same problem of where to go to get a great Oncologist that is still in your network. It must make things even more difficult. Keep us updated and we'll try to help as much as possible. The people here are such a great support system and they gave my family HOPE when we needed it most. You and your family are in my thoughts and prayers. Kerri

Judy: I completely understand about being offline, I was for a long time when Mom was not doing well. Mom's still hasn't been on computer in forever. LOL Hope your final chemo went well. What was the results of the scans????? You are in my thoughts and prayers!!!! Kerri

My Sis-in-law's Mother just had brain surgery to remove a tumor and now they are pretty sure it is in the lung also. We're waiting for PET scan results. They want to go to Sloane Kettering, but Sloane doesn't take Oxford (her insurance). Does anyone any info about health insurance and other ways to get the best doctors if they don't take your insurance??? Any help, info or links would be most appreciated! Once she's locked in with an Oncologist, it's hard to switch. Thanks, Kerri

Dannie: Sorry to be so late to the discussion, but I wondered if the Ritalin was helping. How much are you taking? I actually have been on Adderall for 8 years to help my treatment resistant depression and counteract the fatigue from the antidepressants. I only found out about it being used for depression when I did some research and then found a Dr of neuropharmacology who knew about it and would prescribe it. I've been on the same meds for 8 years and it is the only thing that has helped the depression for any length of time. So your insurance company should pay for it if they say as a treatment for depression. I take 40mg. a day, but I take the generic Adderall, not the Adderall XR (which probably works better but will cost you). The generic Adderall is really cheap, the lowest copay (mine's $10) on the insurance company step ladder. My Mom has been so tired for so long and I didn't even think about asking her doctor about Adderall. Thanks for the idea. Maybe it will help her. Good luck and keep us updated! Kerri

It's funny that I just started going to the Caregiver Forum, as I usually just always go to the regular NSCLC forum. Even though it is my Mom that is sick, when it comes to anything regarding her health, I am the go to gal. Sometimes even she forgets things and she'll say, Oh Yeah, I forgot about that. LOL I guess I like to be prepared for anything, it makes me feel a little better since most of it we have absolutely no control over. Believe me, that has come in mighty handy the last 12 months. This past year, it has been my father and I for the day-to-day things and that is OK. I stopped working because I was working 12 hour days and that was fine when she was doing well, but when things got bad, there really wasn't any other choice for me. I talked to my husband and told him that I would never forgive myself if I didn't get her better, or at least do everything in my power to help her. My dad was trying to take care of everything but we could see he was overwhelmed. I guess it just felt too important to get wrong. There would be no second chances at this. So from December-August I stayed at my parents house during the week and went home to my husband on the weekend. To say I have an amazing and supportive husband would be an understatement. LOL Financially, it's been difficult. Now that Mom is feeling good, I am actively looking for a new job. I'm finding it more difficult than I thought it would be. Now, both of my brothers love my Mom just as much as I do, but they both work and have families. They are just as worried as I am and are there whenever we need them. I read this article in my over 150 hours of research. It talked about Caregiving and how everyone in the family plays a part and serves a purpose. And even though some parts are more active than others, they are all important. It really helped me keep things in perspective. It makes me feel good to be able to help my parents, especially when they've both always been there for us 200%. In the beginning, I would get a little annoyed that my brothers didn't help more, but then I realized they do help. One brother comes with his family every Friday for pizza and seeing her 2 yr old grandson and 1 yr old granddaughter totally makes my Mom's day. And his wife Angie is so amazing, she'll make us dinner and bring it over once a week and make sure Mom sees the kids at least twice a week. Their antics always crack us up. My other brother checks in all the time and he goes to the Doctor appts that I can't go to. He and the family come over a lot to spend time with Mom also. He's also the one I cry to when I get overwhelmed or just need to talk. And my Dad is just phenomenal, always making us laugh and doing the food shopping, cooking, driving us to all the appts and about a million other things. Since this whole thing started a year ago, it's the first time in my whole life he has cried. He just adores her, even after 41 years of marriage So if you are the go to guy/gal, remember that everyone plays a part and ask for help, most likely you'll get it. And if you are one of the other family members, remember what you do is important as well and cut yourself a break if you cannot be there all the time. It's not just the quantity of time you spend with a loved one, it's the quality of time. When they say it takes a village to raise a child, it seems like it also takes a village to fight Lung Cancer. I cannot wait until we finally find a cure. Kerri

Thanks Patti!!! I sent her the info and the link to her and her sister, so hopefully they come. Love, Kerri

Sandra: Let's also hope and pray that they FIND THIS BOARD!!!!! I do not know what we would have done without it and everyone here. It's the only Lung Cancer board I have found that people respond and not in a few months ya know??? LOL It means so much to be able to get answers from people that are going through or have gone through it. Love, Kerri

I am so glad he had such a good day. Hopefully it is one of many. After a year, I have finally gotten used to the uncertainty from day to day. Today might be a crappy day, but the next 3 days could be great. Just cherish all the good days you can. Do the fentanyl patches stay on your Dad?? My Mom was on them for a few months when she had Shingles (and the oh so lovely byproduct Post Herpetic Neuralgia) and recently the Dr took her off them because they kept falling off. She was on the 75mg in the beginning, but then she started LITERALLY falling asleep at the kitchen table, while she was standing up, etc. LMAO Then she was on 50mg which seemed to work well, except that we were putting a new one on everyday after they would fall off. Just wondering. Thankfully, Mom has been feeling good for the past few weeks. So we're just enjoying spending time with her. She's still tired, but it's nothing a few small naps on the couch doesn't cure. Both you and your family are in my thoughts and prayers. Keep on fighting!

Something happened today to make me realize how vital HOPE is to surviving this really crappy disease. My Sister-in-law's Mom had surgery to remove a brain tumor last week. While they were doing pre-surgical testing they saw a spot on her lung. So after more testing, it is believed to be Stage IV Lung Cancer that spread to her brain. But they have not done a lung biopsy yet and they have not gotten the results of last week's PET Scan. I spoke to my sis-in-law last night and she said that the head of the hospital's Oncology Dept told them it might be terminal since it has spread. I was so very angry at that Idiot who should be working in a lab, not dealing with human beings. Terminal is a horrible word that is used way too much and, sometimes, prematurely. when I heard her voice, I just felt so horrible because she just sounded so terribly defeated. A few days earlier she was set to fight. My Mom has Stage IV NSCLC and the first thing her Oncologist @ Sloane Kettering said to her was "You are NOT going anywhere." It gave my Mom so much HOPE and helped to get her ready for the fight. Her Doctor and many other wonderful doctors believe that NO ONE comes with an expiration date and to give a timeline could hinder someone's recovery and would just be a guess anyway. They are looking for a new Oncologist and I pray that the PET Scan shows that it has not yet spread anywhere else. I also pray that she fights and doesn't give up. A lot of times it's the difference between life and death. Kerri

Gloria, I am glad your dad is getting through the chemo ok. We did the same thing as many others, brought DVDs, music, books, etc. Mom would sleep a lot of the time or just watch Cable TV in her little room. I definitely think it is IMPERATIVE to make sure he doesn't lose more weight. It seems to keep them stronger and more able to fight. Mom also got sick of Ensure, so we switched to Boost. Also once or twice a day we make her a shake with Milk, Ice Cream, Ice, Vanilla extract and a LOT of Hershey's chocolate syrup. My Dad buys either that or Bosco LOL And he buys 4 at a time now. We also put in ground up Apricot Seeds and her supplements. Another reason for the shake was because after like 3 months of chemo Mom couldn't handle swallowing all the supplements we had her on. I really think the supplements (we got them from Ernie's story initially) really made a difference. But it's like 20 pills a day so we grind the tablets in coffee grinder (we got the coffee grinder because we heard apricot seeds help and they have to be grinded) and open up the capsules. Then we add them all to the shake. This way Mom is getting the supplements and she hasn't lost any weight. And for a few months there, she had NO appetite and I was the only one who could get her to eat. Because I would get a small plate and put like 3 green beans, a big spoonful of potatoes and a few bites of chicken. That way she didn't feel overwhelmed by the food. And applesauce, yogurt, little cup of fruit. Anything he likes just a tiny bit so he'll eat. Hope this helps a little. This website and message board gave my family and I hope when we thought there was none. They are such an amazing group of people and I cannot imagine what we would've done without them. You can actually come here and say see, this person has lived 1,2,3, even 5 and 10 years with late stage Lung Cancer. It is NOT a death sentence. Keep us updated on your Dad. You all are in my thoughts and prayers. Kerri

Patti B., I hope you both get the RASH really really bad. LOL When does the rash start? Can I ask you what you have gotten for the stomach in preparation? Want to make sure we have all Mom will need. Any other helpful Tarceva hints??? Thanks all!

Mom's Oncologist @ Sloane called me back and told me that there are actually 2 spots, 2.5cm on the liver. He said they have had very good success with Tarceva and she will get another scan in 6 weeks. If they have not gotten smaller they will do RadioFrequency Ablation. He believes it will be more successful than the cyberknife. I feel a LOT better knowing that there's HOPE and this isn't catastrophic. I really appreciate all the responses. Thanks for being there. It helps A LOT!!! Mom is feeling great and I'll keep updating. Thanks again!

I'm getting a little nervous because it seems like NO ONE has ever had any liver mets. I don't know if I am being paranoid or if this is a REALLY bad sign. Please anyone that had liver mets, even tiny ones, please let me know. Thanks so much! Kerri