Andrea

Warning: Have tissues on hand. That was so beautiful

Praying for your mom! What kind of s urgery is she having?

Hi guys, I need your help. Boy am I learning! I am going to out of pocket expense to cover venue and insurance and then get reimbursed from the proceeds, so that is not an issue. But here are the issues as there are pros and cons to all ideas: 1. City parks don't hold enough people and they all rejected me. 2. County parks hold the people, have picnic seating area, will allow ampliphied low level sound, have rest rooms. Problem is, everyone has to pay $5 to get into park and also I cannot exchange money on Countypropery, so everyone would have to pre register (I see that as bad, but one pro is that I will know how many are coming, and for walk ins I can do an IOU voucher). Costs: $210 venue; $250 insurance; plus I have to purchase insurance. 3. Schools---I have called and am talking to a lot. I am talking to all the schools where the Cancer Society holds events. However, the Cancer Society is bigger than we are, so they can get more people and have more help and committees. Schools are expensive. $1000 rental fee for venue. Plus I have to get insurance. And porta potties. I am thinking County parks and dealing with the money issue

Hi Everyone, So what are the walks called? I was going by Renee's post and thinking of "Lung Cancer Survivors 4 Change is proud to announce that the First Annual Southern California Lung Cancer Walk/Rally will take place on Nov 6.". I was thinking "First Annual Southern California Lung Cancer Walk/Rally"so in future years I am not limited to Orange County and can also do Los Angeles County. I have one thing secured for my walk. A couple of gift certificates to haircuts from a top salon (haircut value $100). Yay! It is a small step. I also set up an e-mail address for myself for the walk Now I still need the venue. I was all excited, I thought I was set. I have learned SOOOOO much. City parks will not hold the amount of people. The larger regional parks are beautiful, they are County owned and can hold lots of people. However, you are not allowed to exchange money on county grounds, even for raffles! To make matters worse, only 3 parks allows a PA system. I was about to book one park and have everyone pre-register and do IOUs for the few walk ins, but thankfully I talked to a Clown who does work in the area and said the walk from parking is sooooo far and up a hill and that didn't seem good. Next week I am calling local universities to see if I can use the track area of o ne. I am sooooo anxious to get a venue so I can start hitting everyone up for donations!

I did not even think of that. Well we may be boycotting the products, but no harm in taking a "looky look" at their forms and brochures for our walks Heehee

http://www.revlonrunwalk.com/ is a website my friend sent me to give me some ideas on registration forms, etc.

I am making some progress in organizing the California walk...... I contacted a bunch of local parks as a venue....I wanted somewhere that we can walk, rally and do raffles, and ahve restrooms...... I will need to lay out $210 venue fee, $200 permit fee, and probably $500 insurance, but I am sure I will get that back. I just e-mailed Rick and Katie. This board has helped me soooo much that I want to do the California Walk to benefit LCSC and have proceeds go to them. Profits will be a bit less having to buy insurance, but so what. I hope and plan to hit as many people up for money as I can :):):)

Heather you crack me up. I would do the same thing, we would be fast friends Although I gotta admit, I am not the best at nutrition, battling weight issues my entire life which I am trying to get under control. After reading your post though, I spilled out my coffee with sweet n low and got a new cup with just a little sugar. I agree wholeheartedly with what Dean says, it depends on the source of the jokes. Those suffering can and should joke. It is the ignorant people, who don't realize they are ignorant, that I want to punch. Same thing with chubby jokes, it is fine if I make them; but if it comes from a different source it just is not good

Thanks Fay It is Grade A, highly undifferentiated adenocarcinoma. Also called now broncheogenic carcinoma. So it is the fast fast spreading kind. My hope is that it they keep a close eye so should it come back, it is nipped in the bud ASAP. I told my mom I very well could have saved her life b/c no one in their right normal mind would have asked for a chest xray for that minor minor cough (we had a family friend in NY die of lung cancer, she was a nonsmoker, so being neurotic, my radar was up). Since it is such a high grade, it really does seem like time was of the essence. I suggested (jokingly) that my parents bow down to me or call me princess or do something to acknowledge me, so now they nicknamed me "Royal Henie" b/c I can be a pain in the butt. Heehee

Thanks everyone As for the blood clots, she is on cumadin for it. She went off and had lovenix shots before surgery. They took her blood on Monday to check levels ( i forget the name of waht th ey look for for clots), and her level was good, so they want her to stick with cumadin. I myself am a FIRM believer that statistics are outdated and we should not look at them. They are based upon studies from years ago w hen treatments were different. I can honestly call myself hypocritical for even worrying about that b/c i am the first to jump up and d own and explain how logically they are outdated

Has anyone else experienced a realization of now being extremely sensitive to all jokes that deal with cancer or any medical issue? We were on a break waiting for the judge and people were talking and the clerk innocently said "If I ever find out that I have an incurable cancer, I am going to divorce my husband, cash everything out and travel Europe " I immediately like an idiot said "well you never know if cancer is incurable, you have to investigate, don't ever give up before getting a few opinions". And then I said "go to Europe now, by the time you find out you have incurable cancer you most likely will not physically or mentally be able to travel and enjoy yourself." It was such an innocent comment she made. Yet I took it so seriously. I then said being embarassed "don't mind me, lung cancer is like every other word out of my mouth or in my mind". It is true, I am thinking about lung cancer and this board all the time. The thought is as routine as it is for me to brush my teeth daily I even seem to find the need to educate my friends on the absurdity and statistics of this beast

I could not help but laugh and cry when I read this strong of posts. It puts the feelings I am experiencing right now into words. Yes, I AM happy that my mom was possibly restage incorrectly and it might be 2B instead of 3A. Yes, even if it is 3A, I AM happy that her path report was good. BUT I sit here and read all of the posts and signature lines and realize that so many whom I have come to know were "clean" or in remission or doing well and then BOOM, mets. It is like Fay said, Ed has a way of re-entering our lives and I sat here tonight crying, hitting the sofa and not understanding why Ed has to do that. The fear and uncertainty is overwhelming. And I feel SOOOOOO guilty for even sharing my feelings here b/c I AM lucky, right now my mom is in lots of pain and recovering from surgery, but she does have a chance. I want to be an activist b/c my mom cannot be one and I feel like I have had rare good fortune with this beast so far. I just wish I cou ld get past the everyday feeling of fear and anxiety. I am glad to know I am not alone. Well now, let me take that back, this is utter torture, so I don't wish it upon anyone, I'd rather be alone. But at least I know others feel like I do, so we don't have to call the paddy wagon and tie my hands with a white jacket just yet

Karen, I have no experience to give an opinion, but I just want to say prayers are your way! I feel like I missed something, what led you to the neurosurgeon? How are you feeling?

Yay! And look at it this way T-bone, if you woke up feeling good, you STILL would not have wanted to go to radiation; I am sure you would have rather taken in a good movie I am glad you are finished with this part!

Thanks John. That was helpful. The new report says "this is now clinical stage 2b (t2-n1-m0). During the mediastonoscopy, a l ymph in the right upper paratrachael was positive, so they made it stage 3 at t hat time. This is all so confusing. And statistics are the worse, some websites say 23%, others high, others lower. I guess it is best not to look at those

I noticed that if i go to www.lchelp.com i automatically log in, but not at lungcancersurvivors.org

We got the pathology results, the margins were clean and they removed lots of lymphs. The surgeon told my mom yesterday that she is now in the "favored" group of being "potentially curable", although I don't buy it. We see so many people living with NED, but then ED just returns and it is still more likeley than not it will come back. We just have to keep fighting. The surgeon said she will feel crappy for a few months from the surgery. Another intersting thing, the report has her at Stage 2B. I called the surgeon office and the nurse explained that a mediastinal lymph was positive during the mediastonoscopy which automatically makes it Stage 3, but they cannot be sure till the "big surgery" and now they have her as 2B clinically. I don't think it much matters, we just need to wait and see. Don't get me wrong, I am GRATEFUL that we now have a chance. I just am overall bummed and depressed and mad at how this disease robs us, the uncertainty, etc. My mom's oncologist wants to do his own tissue testing and then will decide upon radiation and/or chemo. That's all for now. We started a trial which got continued, so I am going to work on finding a venue for the walk.

Andrea, Tears are rolling down my face. I am so sorry. I wish I had magic words to say. You and your mom are constantly in my thoughts

I love that poem. It describes life as I now live it. Can I send that along to some friends?

JC--I could not open that link. Fay--thank you! We did call the dr immediately, a few times actually Why is it though that I am never 100% satisfied when the doctors say it is normal? I just don't trust them all. The surgeon said it is very common, she just keeps soaking through everything. So at 5:30 my dad took her to her internist who is more local and he looked at it and said it was ok, normal also. Yet the internist is not following the lung cancer care and I just wonder what they all know anyway since he didn't want to do a chest xray in the first place. My dad called the surgeon office again at 9pm last night and they said she can come in Monday. Until then, either live with it or go to ER for another stitch. So far she is trying to deal with it, my dad prefers not to take her to ER b/c at ER you are exposing youself to tons of germs, so it is a double edged sword.

My mom is majorly oozing, her s urgery was last Thurs. Has this happened to anyone?

Thanks for the info! The original pathology from the mediastonoscopy said it was non small cell with adenocarinoma features, highly undifferentiated, Grade A tumor (which I beleive is fastest growing). Apparently Grade A spreads the fast, but does better with chemo, or so the surgeon told us that day to make us feel better I am assuming they took out more lymph nodes and are testing all of those. I won't call them and bug them yet about the report, but I'd rather save my nagging for ct-scan time

Thank you It is all coming together now! I remember reading from the mediastonoscopy report that they removed like 4 lymph nodes and one was positive, so they knew she was IIIA, closed her back up for chemo before surgery. I also know that they did remove lymphs this time, but not sure how many. I guess they need to see if more lymphs are positive than we intially thought and then do more chemo. I believe they said no matter what, radiation was likely to be on the safe side. Also interesting what you said about tumor sample, my mom's oncologist is at a different hospital than the surgery and he wants a sample. His office mentioned this on Tues and surgery was Thurs before. I was wondering if they keep the tumor that long. From what I understand her oncologist is big into doing his own testing.

Hi. I feel so dumb asking this b/c I think I know the answer, but yet I am confused. So my mom had her lobectomy which removed upper right lobe and they took out lymph nodes, one or two lit up on PET scan, hence IIIA. Now we are waiting for pathology reports. What exactly are we waiting for though? We know the tumor in the upper right lobe was cancer and we know from the mediastonoscopy that the lymphs were cancer. My only thought is that the pathology will tell if additional lymphs are cancerous? I am so confused about what we are waiting for

Med mal cases are so hard to prove for many reasons. Again, I really have no opinion b/c in certain situations, lawsuits are 100% justified; and in other cases I have seen, I feel bad for the drs. First, it is hard to prove what a doctor did is wrong b/c decisions are made fast in emergency situations and it is a judgment call. Second, doctors are all somehow connected, so it is really difficult to find one doctor who is qualified as an expert to actually be willing to give testimony that another dr is wrong. Usually you have to go out of your area for experts which is expensive. Let's say you live in LA and are treated at Cedars and want to sue a dr related to Cedars--you will be hard pressed to find a dr in the LA area to give an opinion that a Cedars dr was wrong (or wrong in the sense of violating the law) because that doctor may sometime want to work at Cedars. Also, that dr would not want someone to say that his judgment in his own practice was wrong; so he won't testify against another dr. Third, in most states, which I find ludicrious, a Plaintiff can get $7million punitive damages from McDonalds for coffee being too hot, but on Medical Malpractice claims, the limit for non-economic damages is only $250,000!!! Fourth, you have to prove all of your damages and show that your outcome now is different because of the dr's mistake. In other words, if the dr screwed up, but you are in the same position you would have been, you lose b/c no real damage. Fifth, you have to get an economist as an expert to prove how your income has been effected, what you would have earned but for dr mistake, how much you had to spend in medical costs. That is expensive itself! Sixth, Plaintiff lawyers usually work on a contingency, meaning they get a certain % of winnings. So it is expensive for an atty to even be willing to take on a med mal case that does not have the potential for huge winnings and many won't take small cases unless the client puts up fees or pays up front. Also, it is expensive to hire doctors to give their expert testimony and most people cannot afford expert fees and many lawyers won't forward them. Bottom line, it is crappy for those with a legitimate case. But protects drs from all the ridiculous lawsuits.