ursol

I started Stereostatic Radiosurgery treatment to the abdominal area (by the renal artery and adrenal gland area). First treatment was this past friday and I have two more to go. Has anyone else on the board had SRS to the abdomen and what side effects did you go through? I have excruciating pain of the abdomen and now taking painkillers. I have also been vomiting quite a bit. thanks for any input. Lilly

Hi James, I'm sorry you have to join us. This disease truly sucks but this is a good place to make some friends, share information and get support. Lilly

haley, Welcome to the site, the people here are really supportive. Don't let the dr. give your mom an expiration date. I've already lived past my statistic as many, many others have. Lilly

I'm soo sorry to read about your loss, I don't have any words that could probably comfort you right now so just know you are in my thoughts. Lilly

Debbie, I have not been on the site much lately and didn't realize Alan was not doing well. My heart goes out to you at this time. I'm so sorry for your loss. Lilly

Rich, I'm soo glad you are home. You are an inspiration to many. Lilly

Although I had symptoms for awhile, shoulder pain, Bronchitus annually, bad coughs I and my doctor assumed the coughing and bronchitus was due to my smoking and the shoulder pain was due to lack of exercise as the pain would get better when I participated in Aquaerobics. By accident after my third child was born, my pulmonologist sent me to a CT Scan much to my resistance as it took them about three months to actually get me to go. I do not believe he meant to send me to a CT Scan as he normally does not send without a chest x-ray. In my case, Chest X-rays would not have shown my cancer. I went for the CT Scan in the morning, within a few hours my pulmonologist called me. That is the worst phone call that I ever received in my entire life. It absolutely ruined my life. Lilly

My baby girl (two and a half) is getting worse by the day. I cannot seem to control her at all. Neither can my mother. She also has figured out that mom is sick and cannot run fast or go up the stairs, so she takes advantage of that. I continously find her with mascara on her face, and lipstick all over her mouth, writings on my walls or desks, temper tantrums all the time when she does not get her way. Please tell me this gets better. Happy Fathers day to all the Dad's on the site.

Tracy, I'm soo happy this is working for you. Wishing you lots of continued stability!! Enjoy the summer!

I just went through my three month scan this morning. CT Scan of the chest, abdomen and pelvis. My oncologist's assistant called me tonight to let me know that she has already read the report and although my doctor has not yet read it, it looked good. I just did not expect it..I was thinking I couldn't be that lucky. Anyhow, it looks like I will get another 3 month vacation. Yipee kai ay! Lilly

Sandra, Great topic..I am a workaholic and am not ashamed of it. Sometimes my oncologist thinks I'm crazy to keep working but as long as I can still physically do it I prefer to work full time than take a pay cut with LTD and SSD. It's not just the money, I love the challenge. My company really promotes professional development and allows us to take on projects outside the scope of our jobs. Currently I'm getting involved in our international business because I felt like learning something new and now they are sending me to Brazil. I also think that my mother does a better job at raising kids than I do so I like that she babysits my baby girl every day. I do realize that in this journey there will come a time when I absolutely cannot work and I'll cross that bridge when I get there but for the meantime I'm loving what I do. My older kids also think I have a cool job and would really be disappointed if I left it. Lilly

I just thought I would share that today is two years from my official diagnosis of this dreaded disease. Thankfully, I'm still alive.. Thank you to everyone on this site for your support, it has made the two years easier for me to handle. Lilly

anne, I'm sorry I'm answering this string so late. Between work and the kids I have so little time. In 6 more days I will be a two year survivor. I started off stage IIIA but soon advanced to stage IV. I believe I was stage IV all along and that they missed the adrenal gland tumor initially. I don't dwell on whether it could have been caught earlier. It is what it is. My baby girl is only two and like you I have got 16 more years until graduation and really want to be there. You need to believe that miracles can happen, and we could survive long term. People have proven that it is possible and that survivor could be you. A big hug to you Lilly

Sometimes I wonder if I should not have told anyone that I had lung cancer. Obviously they would have wondered what was wrong with me once they saw the wig and the obvious health changes but maybe I could have kept more specifics to myself. I say this because more and more I feel very isolated. I have my really close friends who still treat me the same for the most part but at work there are so many people who treat me like a leper. They stay away from me, they don't ask me questions instead they ask my team members. Sometimes they don't even respond to my e-mails. No one ever says to me "how are things going" people say instead "how are you feeling". A nice woman at work said to me the other day "I hope you don't mind that I don't ask you how you are feeling, I'm sure you are sick of hearing that". I was so thankful that she understood how I felt. I cannot imagine what it must have been like for my grandmother when she found out she had cancer at 37 years old in 1927 and had to deal with the fear that people had about cancer back then. I really don't think that people see me as a person anymore, only as a disease. It really makes me sad. Anyhow...I needed to share that tonight. I'm going tent camping with my family this weekend, first time since my diagnosis. A little bit of normalcy. Hope you all have a great weekend. Lilly

Sandra, My children are 14, 8 and 2. I have and continue to tell the older two the truth about my disease. They know it is not good but they also know I am tough and a fighter and that I don't want to die and will do what I can to stay alive but sometimes it just isn't up to me, it is up to God. I am really glad that I have been honest because I don't want them to have any surprises. I came soo close to dying in January so now they truly understand the gravity of the situation. Like Gail, I rely heavily on the guidance counselors at school. They keep an eye on my kids. My 8 year old sees the school social worker once a week with three other boys that have a very ill parent. (unfortunately one lost his mother to leukemia last month). The baby on the other hand does not understand what is going on and just knows that mommy is sick somehow. She knows I can't pick her up like daddy does and chase her up the stairs. She is very accomodating to what I cannot do and need her to help. It is really hard to give you advice, only you will know what you think your children can handle. Lilly

Bucky, I have read that Tarceva may pass the blood brain barrier. I hope Tarceva works well for you. You made me laugh about becoming a muslim. When my hair fell out after chemo I wished I were a muslim where I could cover up almost my entire body. There was a muslim woman getting chemo at the same time as I and she looked always incredibly beautiful. Lilly

christine, I hope this turns out to be nothing. Lilly

Randy, Thanks for posting this. I was saddened to hear about this. Lilly

Connie, You always give me hope. You Rock!! Lilly

Rich You are an inspiratuon lilly

A few days ago PBS televised a documentary which was done by a woman who had lost her husband in 2001 to Mesothelioma. She had taken home movies to document her husbands journey and then interwoven are several stories of other cancer patients. The documentary was called "the truth about cancer". I liked it because it showed people with cancer with a more accurate perspective. Not sugar coated at all. It was somewhat difficult to watch at times. Following it was a panel of Dr.'s that were also cancer survivors having a conversation about cancer. If interested both of these programs can be watched online at pbs.org I can't sleep tonight..in law woes!

Welcome Susan! Hope you continue to remain stable. Lilly

I had to share this. Today was my second day of a three day training at work called breakthrough trainer. The moderator from California talked about Responsibility and that we are responsible for everything in our lives and we make choices for everything. As people were questioning him, he brought up the tobacco industry as an example and indicated that they (smokers) blame the tobacco industry for their problems when they should blame themselves as they knew tobacco was bad for them. I cannot believe he said that. I wanted to get up in the middle of the class and scream "I have lung cancer you Moron, do you think I deserve this". But I didn't because I did not want the whole room to feel sorry for me. He also said there is no such thing as hope. Hope doesn't make things happen. Unfortunately I have another day to put up with this guy tomorrow. YUCK! Lilly

I totally understand. No one in my house will talk about it either. I put a binder together that I keep at work and my colleague has instruction to give it to my husband if something happens to me. I list out things like "Don't forget to sign the baby up for Chatechism in 1st. grade". What I can say is that I recently was on a respirator for two weeks and my husband managed to pay bills, take Katia to Dance, sign Alex up for spring soccer, cook dinner so on and so forth. I was impressed. They will figure it out when they have to. Lilly

Thanks for the advice on the curly hair. My daughter who has a room full of hair products has been helping me style it. Others tell me that it looks good and I look younger but I think the bottom line is that like Heather I still want to see myself as the person I used to be. After 40 years of long hair I cannot seem to want to accept a short haired version of myself. When I was young I permed my straight hair but it was long curly hair as opposed to the short version. ((((Heather)))))Big hugs to you as I totally understand how you feel. The good news is that our children will always think we are beautiful no matter how our hair looks. Lilly