peacelover

Hey Amy, I hate that your dad is going thru this right now...I am sending you hugs and praying for dad to be in less pain... My mom was on Tarceva for 2 years and it was great at the beginning. The only bad side-effect she had was a bad rash and loss of appetite-but it did shrink her tumors considerably and actually killed the new cancer in her 'good' lung which was awesome. They used Tarceva when the other treatment options were no longer options for my mom, not sure if that is the case with your dad too but it sounds like his illness is progressed like my moms. When her tumors showed actvity again they doubled her does which was AWFUL-she had major side-effects from this and once she reported them they stopped giving it to her altogether. Not sure if that helps-I hope your dad does well with this... Bright Blessings- Melissa

Karen....i am so sorry you have to make this trip and grateful that you are able to make it too. I am praying for you and your family and asking angels to comfort your daddy.... Big Blessings! Melissa

Hey Everyone- Thank You All SOOOO Much for the good thoughts, prayers and support...I went to se mom on Sunday. I took my son. She was 'all smiles' for Josh(my son)I sent my dad and him to go look at a couple of cars we saw on the way over and that is when her smile came down and she started talking. One moment about her and my father looking at retirement homes....the next about the suit she has picked out for her funeral. Dealing with your own mortality must be really tough..i have no idea how she must be feeling right now. She told me that she was aware that she was dying.that she was waiting on a sign from God, that she was not ready to give up yet but that it just hurt soooo bad all over all the time and she was so tired of feeling tired. I told her the doctor could prescribe meds for pain-she said she did not want to 'trip thru her time left' in a drug haze but feel everything she could as long as she could. She is having incredible awful nightmares, i told her they could give her something for sleep and anxiety..we packed so much talk in 30 minutes...then, as soon as my dad and son got back she put on the smiles again. I went today and spent the day with her. She said she felt better but she has a hard time getting off the sofa...helped me from the couch cook some dressing and stuff for turkey day. today, she says if the tumors are shrunk then she will 'think' about keeping up the chemo. I told her I respected either decision. Anyway, hug your loved ones extra tight and know that I am saying prayers for all of you and sending you blessings! Peace Melissa

Hi All- I just had to share this..I went to the doctor for a physical last week. I started training for a marathon and am turning 40 next year and wanted to havea baseline as to how much my health improves with this training. Anyway, I told my doc my moms history and that my paternal grandma had LC and that I wanted a chest Xray.... he said...'you have a cough' I said no, 'i do not have a cough' he says again...'melissa you have a cough' I say nope no cough just want an xray cause my mom never had a cough either and still has LC Doc proceeds to tell me that without a cough or some symptom my insurance will not pay for an xray at a routine physical.... WHAT!!!! They take money from me twice a month and I cannot get a 75$ Xray that could save my life!!!!I tell him that is crazy and he tells me that there is no clinical evidence that yearly xrays help in survival or detection of lung cancer..WHAATTT!!!! I was amazed and enraged! what exactly is good for detection anyway!!!! I fained a cough and got my xray!!! blessings! Melissa

Hi Bam- I am sorry to hear about what you and your family are going through right now. I think the doctors sometimes don't want to get 'to optimistic' although I have a hard time understanding that since positive mental input is very helpful in this fight... I think 77% shrinkage is awesome really! I know that this is a roller coaster and it is easier some days to be strong than on others. Remember to take care of yourself too! My mom was diagnosed in March many years ago and that first Xmas I thought would be the last...i just sortof learned that you have to take each day as the gift that it is, hope for the best and not worry yourself silly everytime you leave her or every holiday/birthday thinking this will be the 'last one' that you have together. I did that for a while and it will make you crazy FAST! Easier said than done I know..I am praying for you guys and send you bright blessings! Melissa

Hi All- Need to vent a sec- I had a rather surprising phone call from my dad today. Mom is not doing so well. She had a round of chemo 2 weeks ago and it has really taken a toll on her body and spirit this time around. I suppose that 8 years into treatments that will happen. I am shocked because she has never had a really big issue with chemo other than some fatigue and digestive side effects. Big surprise too that he had to take her to hospital on Weds last week for fever and pain she could not stand anymore- in 8 years of cancer fighting she has never had to go to the hospital...surprise too that he did not call me. Apparently she has not been able to get off her back all week. O2 all week and he is having to shower her and everything because she is so weak. No pain meds were prescribed-just penicillin for the fever, a procrit and B12 shot and sent her home. This morning he says that he is not sure how long she is going to last, that if i need to say anything to her I should come and say it tomorrow and that he really does not think I should bring my son because he does not think he should see her this way.... I am really shocked-last week we went shopping and she seemed to have a ton of energy..now this.... another surprise, he said she does not think she wants to take any more chemo Some of you know that I am starting a non-profit to donate paintings to chemo centers...yesterday I found out I get to have an exhibit of my work at a gallery here in Dallas.and paint for a 12artist compilation being given to St. Paul Hospital..Awesome news! I have never felt such complete opposite emotions at the same time...this roller coaster is a doosey! Blessings to all Melissa

I have often wondered why people see lung cancer the way they do....and if that has anything to do with research and donation and support. I mean the first thing that people always say to me when I tell them about my mom is 'Oh she must have been a smoker, huh?' Of course I reply emphatically NO......that alway leaves them with a question mark on their face-almost like the do not believe that she never smoked nor was she around second hand smoke.. I walked in OK last year for Lung Cancer and had a hard time raising 500$..I just started training for a marathon with Team In Training for Lymphoma/Leukemia and in 4 days am there already... It boggles my mind. So my question is...do you think people are less likely to support Lung Cancer research because they think people 'do this to themselves' with cigarettes? Almost the way society throws out single moms because it is their fault they are single.... Maybe that thinking is what we need to try to change. just some thoughts melissa

I must be weird, it just does not bother me at all to see pink everywhere I just think cancer stinks period...and any raised awareness is awesome..including pink! I would never wish the effects of cancer on any person or any family and would love to see ALL forms vanish from the face of the earth. I think to that all cancer to some extent is interconnected and that advancements in the treatment of one type will cause advancements in the all the other types of cancer...and I think that is what we ALL want! Peace Ya'll! Melissa

Hey Sis- I know that Alimta is fairly new and that it is used specifically after othr treatments have not worked and cancer has spread. It takes 30 minutes to administer and in my mom's case she gets a shot every 3rd week for 9 weeks-so 3 total in that round. Here is their website http://www.alimta.com She has really done well on this drug. It sounds like your sister has a great attitude and that makes a huge difference in the fight. Let me know how you are-I am sending you great thoughts and blessings melissa

Hi Sis- My mom took Tarceva, which the docs explained IS a form of chemo because it is designed to attack the cell by starving the cancer. She was on it for about 18 months. She did fairly well with it But ALWAYS had the rash and dry dry skin. No other real side-effects from it. Tarceva did great for a while and her primary tumor appears 'dead' now on the PT scan, or as scar tissue only....she did have some other tumors start to appear in March of this year. Doc said Tarceva was not working so he doubled the dose-which was a BAD thing...she coughed up more blood than she ever has and started using oxygen for the first time ever in this process...he took her off of Tarceva and those symptoms went away quickly.... she takes Alimta now which is doing an awesome job I am not sure about the steroids but sending you and your sis great thoughts and good news at the doctor Blessings Melissa

Great News Ya'll- My mom went back to work after her 3 month FMLA.She had her last chemo of this round last week. She took the leave because the docs said the Alimta would be really hard on her but as it turns out the neulasta shots give her worse side effects than the chemo does... Her SOB is gone as well as those pesky tumors that were on adrenal, thyroid and in her brain..and the lung tumor has shrunk(although still there) Doc says she tolerates this chemo so well and it is doing the job well so she will be on this long term-or until something better comes along. Just wanted to share some great news! Blessings Melissa

Hi Grace- Congrats to your husband for beating his illness for one year-it takes a lot out of a person to fight so hard everyday I know. I hope you choose to celebrate life today in some way, even if very small-I think it helps us focus on what CAN be done instead of what CANT be done and goodness knows that a CAN perspective helps in the fight. I am hoping you have many, many years left together! Blessings to You and Hubby- Melissa

this is a tough time for you I know-waiting on test results is hard! I just wanted to let you know I was thinking about you and sending up a prayer for your family Blessings to you! Let us know how ya'll are please Melissa

Hi Laurie- Not much advice, I just wanted you to know you are not alone. My mom never took this drug but took an ativan for a very short time and said she would rather deal with a little anxiety than the side-effects. It made her really 'mud-headed' as she called it. She has however had periods of extreme confusion like you are mentioning that really freak me out too. We had an entire conversation once with her thinking I was her sister. Then I called her right back and she did not remember we had talked. Another time she called my sister in NH to bring her a breakfast burrito in texas and when I called her and told her i was bringing her one she had no clue what I was talking about. I understand that is hard to go through-this does happen to my mom sometimes after chemo, not everytime it seems. It does go away after a few days. Although it is bothersome since you already talked to her doc I would just say some extra prayers and talk with her as much as you can to make sure she is okay and her chemo head is clearing up. Blessings to You Melissa

This is awesome news- continued good health and strength for your mom. You guys are in my prayers Blessings Melissa

WOW 5 YEARS- YOU ROCK GOLDEN!!!!! I am so happy for you-keep fighting and living life to it's fullest! I am sending you angels to keep you and that pup company! Blessings! Melissa

Happy Friday Everyone! Thanks for all the suggestions, opinions and support. Doing everything for everyone is the way my dad has always been, it is the way he shows loves and always has been and i accept that -it is just exacerbated by mom's ilness. You guys are right that this is his way of coping-he hates that he cannot magically heal her and he is controlling and 'doing' everything to know that he is taking the very best care of the person he loves most in the world. For him, like every spouse I am sure, this is excrutiatingly painful to watch. He does not complain really so much as make comments that are kinda smart *ss to us like when mom doesn't want to eat after he has fixed a healthy meal after working 12 hours he might say ' come on maggie, I cant be the only one trying to make you better' or it's hard work taking care of you maggie, you gotta help me out too' or off to go get medicine for her and I offer to run by on the pharmacy on my way to their house for him ' no it's okay followed by- if it wasn't for me nothing would get done around here' he is just coping the best he can I know, I talked to him about it a lot last night and honestly, he is terified that 'something' will not get done 'right' if I do it and it will kill her and I think he is going thru a phase where he is just flat out tired-8 years is a long time to worry and wonder. also, mom is feeling great now and he has this feeling of impending doom-like the calm before the storm you know. Personally, I want him to know he is supported just like my mom and last night we talked about the fact that mom is not the only one effected by this disease-he doesn't see it that way, and I understand he feels it is his priviledge to care for her at the same time as it gets old. I know those are normal emotions. He knows I am here and will do anything they need-I see them every weekend and talk to them 4 times a week on the phone and he says that is enough support. I just want to wave the magic wand too and make it all better for them you know. No one deserves this disease..... thanks for allowing me to vent once again. Blessings and Peace to You All Melissa

My dad.. Next to my mom he is the strongest person I have ever known. He also has what I call the martyr syndrome. He will not let anyone help him with my mom. Don't misunderstand, mom is fully functional and mobile and all that but there are chemo rounds every 3 weeks and weekly trips to the doc and Scans upon scans-you all know about that. I live 30 minutes away and have plenty of time off work that I could take to help. He is an electrical contractor and just started to work again and is working 12 plus hours a day. My mom will be going back to work soon, but she cannot drive, so he will be going to work via her work and then back to pick her up in the afternoon. I volunteer to help all the time and he says 'your mom is not your responsibility she is mine' I have let him know how concerned I am about his own health and call everytime I know there is an appt to offer a ride to give him a break and he will not ever let it happen. This week he said 'St Paul is a big place and you would not know where to take her but thanks for offering' I take her flowers almost everytime I go to their house on the weekends and always get the lecture that I should not be spending my money on that-bring them dinner and get the same lecture. I think there is nothing wrong with trying to help-I guess he has thinks I am the child and should not be taking care of them.....hmmmmm Anyone else have a well parent that will not let anyone do anything for them to help? Any creative ways you can suggest to get dad to let me help! I know this is just his way of coping and I accept that-I just do not want him to feel all alone in this fight Blesings to all Melissa

Good News-My son does not have strep, some weird viral infection that 'acted like' strep. Mom's doc put her on a preventative antibiotic. She just finished her last chemo round of this bunch and took neulasta today but her blood counts are good so I am thankful for that! Thanks for all the encouraging words and support- Blesings to all Melissa

Don, I am so sorry for your loss. I have not been here long but you and Lucie have shared so much love and hope with so many people here. She was indeed a shiny star and I know you and all your family as well as everyone here will miss her sooo much.... I am sending you comfort and hugs and lifting you all up in prayer at this difficult time. Blessings to you Melissa

We found out Tuesday that my 15 yr old son has strep throat. Now, he is strong and healthy so I am not worried about that, I am worried about my mom though. She is pretty deep into her chemo now and feeling good- next week is her final shot of 3 rounds over 6 weeks so I am sure her white blood cells are low low low right now! I feel AWFUL to have exposed her to it! We were at her house most of last weekend and he was hanging all over her although he did not have a fever and I had no way to know he was sick it stinks to wait and hope my son did not give her a nasty infection! I called my dad and let him know that at her onco doc visit to check her blood counts he should ask for some antibiotics and they gave her some-boy was my dad angry! I understand this anger-it would stink for her to fight so hard and beat cancer for so long and lose to a dang infection! Riding the rollercoaster- Melissa

welcome to this wonderful and supportive space- i am with you-get a second opinion-this can be beat! I second Don's wish that you find an oncologist who is willing to fight as hard a you are! My thoughts are with you! Blessings! Melissa

My heart goes out to you and your family Gwen-i know your love and support means more than you know to your parents. Sending You All Blessings! Melissa

No advice Shirley, I just wanted to let you know I am holding you and your family in my prayers. Blessings to You- Melissa

Hi Shannon- I am sorry to here about your step-dad's diagnosis however-I am so glad you found this place. There are so many supportive people here and so much can be learned from hearing other peoples journey. A diagnosis like LC will push the a human soul to the limit and I imagine that everything your mom and sd are going thru are pretty normal. My family has ridden the emotional roller coaster and we have all dealt with it in different ways. At first, my dad was very angry at mom for 'leaving him' and even more angry at God for taking away from him the only thing he ever really loved more than life....he thought mom's dx was God's way of getting even with him for some imaginary crime he committed. My first reaction was 'uh-huh, no way-this is NOT happening to my mom' I handled my emotions by researching every single possible treatment for this disease. My sister lives 3000 miles away so her reaction is very matter-of-fact and while she makes no bones about the fact that this sucks she is a realist much more than optimist like me. She can be quite harsh sometimes when we talk about mom's health but I know that is just her way of coping. 8 years later we have all just learned to take one day at a time....I guess that is all we can do really Try not to take your Step-Dad talking about his death as some sign that he has given up on life-maybe he NEEDS to talk about it, maybe he is trying to make all of you feel better by expressing that he is okay with dying if it is his time. In 8 years my mom has only talked in brief spurts of her own death. Not too long ago she told us where the dress is that she wants to be buried in...this while she was NED no less so it really wigged us all out-why would she talk about that if she is getting well! Try to feel the blessing that he is having time to share with you how he feels at all and is at least open enough to do that....So, I understand that it is disconcerting to have to hear-you are doing well to be supportive of him despite your own hurt and fear so pat yourself on the back for that please. Anyway, I would not pay any attention to the 'time left' thing....that is anyone's guess truly. There is a fine line to walk between hope and honesty. Hoenstly, I know my mom will die sooner than I would like her too and that most probably it will be from her LC. Hopefully, I enjoy each moment we have together and focus on what she CAN do rather than what she cannot do while we are together. Is the manner of her death something I focus on ever-NO WAY--is the courage and determination and sheer joy that she is fighting this disease with and living her life with each day something I focus on-Absolutely! Not much advice from me I am afraid-I just wanted you to know that you are not alone and that I am here if you need to talk Blessings to you and your family Melissa