<p>momof2, What a wonderful story! Thank you for linking to it.</p>
<p>Payingfor3tuitions, thank you for your post, I appreciate it. Last couple of days have been very difficult but I think I am beginning to see the pattern - the whole experience of chemotherapy treatment really is just totally icky. It hasnât made me sick or anything and I still havenât had any side effects, but, the whole experience is horrible. I note that my mood improves tremendously when I am not receiving chemo, and, it may also be because of the steroid injection that they swear everyone has to have.</p>
<p>Today is better; itâs a beautiful day, and I am at long last doing the sorts of fun, happy things that I have not done since September 14 - making the house wonderful, charging up my iPod in preparation for a workout, and enjoying the stunningly beautiful new flowers that seem to have exploded outside in the last day or so. </p>
<p>Binx, I am sorry that you had to have that experience and am glad that it is apparently a small spec in your rearview mirror now. I do have to be in control - even in just this short period of time since my diagnosis I have seen so many errors (of the paperwork/admin sort) that itâs terrifying. I also tend to speed-dial my doctors if I see even one word out of place that I do not understand. </p>
<p>SBmom, thank you for the hug, I appreciate it so much. Unfortunately I am not a massage sort of a person, but, I am grateful for the people in my life who happily distract me and keep me from totally going off the cliff. My daughter has been simply beyond awesome - I have a âcanât missâ conference call Monday, but, it is scheduled to overlap with my radiation oncologistâs appointment. My daughter is taking the afternoon off work so that she can drive me to my appointment, so that I can place the call from my blackberry and continue it uninterrupted, right into the waiting room for my appointment. What a godsend, I am so fortunate. </p>
<p>DMD77, youâre right. There isnât anything new. No one is going to come up with a cure for this thing any time soon. The statistics are not going to magically change overnight. I do need to keep my eye on the trials, and I am registered so far in every trial database I can find, but, I also do not trust the database alerting systems, so will have to keep a close, constant eye on this. Of course, the long term survivors of this that I either know of or have spoken to directly have not needed trials. </p>
<p>Dadofsam, I may actually have to do that LOL. Iâm not even two months into this yet and the total cost to date appears to be about $175,000. That doesnât consider the cost of my time and loss of productivity. Iâd better make sure Iâm worth it! </p>
<p>Momof2inca, thank you for posting that. Inspiring stories are always helpful and I wish there were more of them.</p>
<p>LTS, I hope that you had a good weekend, away from doctors and hospitals, to renew your spirit. </p>
<p>The cost is, indeed, staggering - but of course youâre worth it! How awful it is, though, that so many others who are also âworth itâ do not have access to the best care.</p>
<p>LTS, you are my inspiration. When I think Iâm having a bad day, I read some posts on this thread to remind me that all my office and other troubles are so insignificant compared to what someone fighting with cancer is going through. I wish you all the best!</p>
<p>LTS, just dropping in with a short note to say that Iâm thinking of you often.
Hang in there. In my experience from observation, managing mood is at least as difficult as managing the physical aspects of treatment.</p>
<p>Many, many thanks for every prayer said for me by everyone here; I sincerely appreciate it and believe that prayers have been heard. </p>
<p>I met with my radiation oncologist this afternoon (so thankful my daughter shows up for this stuff); anyway, reading the scans that I brought back from Washington, she estimates there is an 85% reduction in detectable cancer; only 15% left to go, and, I had another week of chemotherapy since those scans, and, three more cycles to go. The oncologist said this is fantastic, then did an exam, then said everything is âexcellentâ. </p>
<p>Having said that, there may now be no radiation (no decision until more scans the first week of December), because, there might not be anything left to radiate. Thatâs both potentially good and bad from my completely uneducated perspective. I guess it errs more toward good, because, given the recurrance percentage of ânearly everyoneâ, that still gives me radiation as an option later, if and when this nightmare returns. </p>
<p>She also reminded me that the survival percentage âisnât zeroâ, and, I am under orders to reduce stress, and to have fun, and, to stay off the internet and stop looking stuff up. In fact, I think DMD77 must have called her up prior to my appointment, because she said nearly verbatim what is in the third paragraph of post #588 lol. </p>
<p>While I do know that small cell is high chemo sensitive and easy to kill the first time, I am still very, very grateful for incremental good news.</p>
<p>Bunsenburner, as horrible as this is - and it is truly horrible - in the googling that I have done in the past seven weeks, there are many, many cancer experiences that are simply 100 times worse, and that I am very, very grateful that I do not have to face, because, quite frankly, I donât think I could. There are cancer situations that involve unimaginable disfigurement and various elements of physical disability that are simply beyond horrible. And beyond the physical, there are situations out there - far too many - where people do not have the money or resources to get proper treatment or in some cases even any treatment. And then there are those who are old and alone and socially isolated. I talked with the five year survivor in Texas over the weekend; he described to me an elderly woman in Los Angeles living all alone and dying of this cancer; he and his wife tried to call her but her telephone was busy, for days on end. Finally he called the LAPD; they went to her home; her upstairs telephone was off the hook, and she was too ill to climb the stairs to put it back on the hook, and furthermore she was too socially isolated to even know it was off the hook in the first place. And I have read numerous other stories and blogs and personal accounts of people struggling with cancer that are simply heartbreaking, unbelievable, and - to my mind, in a civilized world, totally unacceptable. (This HAS to be fixed and I am looking for ways to work on it, today.) </p>
<p>The message is that no matter how bad things get, itâs not too hard to find someone else experiencing something far, far worse.</p>
<p>NYMomof2 I did have a wonderful weekend - the weather was beautiful, and I spent time doing things I really enjoy, including going running. (Weird that I have lung cancer yet can go for runs.) D and I talked through where to spend Thanksgiving and Christmas; we ate a huge dinner on the water, and went to see American Gangster last night. 
And then I finished packing boxes to ship to my new Washington office; I am looking forward to finishing my lifeâs work there, regardless of if itâs only months, or the hoped-for years.</p>
<p>TheDad, thank you :)</p>
<p>
</p>
<p>That would be #558. :)</p>
<p>So glad to hear your positive report!</p>
<p>Lorenzoâs Oil was not scientifically accurate.</p>
<p>We stop because the cost/benefit analysis tells us further research brings diminishing returns. When I was first diagnosed with extremely severe asthma I researched and researched and researched and tried every naturopathic remedy. I kept getting sicker.</p>
<p>When I found a doctor I trusted and worked with him and stopped stirring the pot I improved.</p>
<p>Latetoschool: You have been so successful in all your endeavors. Follow those same instincts.</p>
<p>I like the Zen adage: Muddy water is better cleared by not stirring.</p>
<p>Latetoschool: My family talks of your often. Both my college age children are pulling for you. </p>
<p>Sending you the vision of crimson leaves against a bright blue sky.</p>
<p>Love from us all here.</p>
<p>LTS, I can actually hear the thoughts of all your many CC friends, all hoping youâll pick THEIR town for Xmas vacation, so they can take you out for some celebratory⊠errr⊠ginger ale!!</p>
<p>ADad my brain is not working quite correctly. Itâs either the stress of the situation, or the onslaught of drugs, orâŠanyway, last night, we left for dinner, then movie, then didnât get home until 2:00 a.mâŠI left the keys to our house handing in the door. Literally. Didnât even finish locking the door; I must have just put the key in the lock and hopped in the car without finishing the process. In Miami no less. Weâre so lucky that all the laptops etc. werenât stolen. </p>
<p>Mythmom, thank you sooooo much for such kind thoughts. My intention from the start was to keep this thing in its appropriate cage, but, I wish I were a little bit better at it. Immediately after release from the hospital I got myself a third, special cell phone. Itâs my dedicated âcancer phoneâ, meaning, all calls with doctors, hospitals, insurance, etc. and even calls to survivors are strictly restricted to that phone. I did this on purpose because I love my work, and I adore my friends, and I donât want cancer infestations all over the place - anyway, I was in the oncologistâs office this afternoon, and the stupid thing rang, and I explained, oh, thatâs the cancer phone, let me silence it, anyway, I explained to her what is a âcancer phoneâ and she burst out laughing and said that was the funniest thing sheâd ever heard of a patient doing. </p>
<p>SBmom lol we came up inconclusive and intending to make the decision based on the radiation treatment plan, which we now of course still do not know.</p>
<p>LTS, that doctorâs report sounded very encouraging, didnât it? Must be all those positive thoughts we are sending your way.</p>
<p>Never, ever, ever underestimate the power of prayers and good wishes paired with the power of an amazing mind and spirit determined to accomplish wonderful things!!! If I was in church right now I would stand up and SHOUT!!(and my church is not so much accustomed to that⊠</p>
<p>LTS, You go!!!</p>
<p>LTS:</p>
<p>This item just appeared on the Harvard website. Hope it might be of some interest to youâand cause for hope!</p>
<p>
</p>
<p>[Study</a> paints genetic portrait of lung cancer | HarvardScience](<a href=âScience & Tech Archives â Harvard Gazetteâ>http://harvardscience.harvard.edu/node/7675)</p>
<p>Well, LTS, I canât take credit for the stuff in my post (558) since Iâm pretty much quoting the oncologists weâve dealt with (things I wish I hadnât learned, items 197 and 301). I think maybe they teach that stuff in oncology school or something ;)</p>
<p>Today my son told me heâd done what we call around here âplaying the cancer cardâ as part of explaining to his current employer why he would only be working for them part time. âI want to spend more time with my parents.â I thought of your daughter immediately. I know my son meant it, and Iâm delighted to have him around. (He then told me he was planning on spending January visiting friends in Australia⊠so Iâm not too worried.)</p>
<p>cancer phone, thatâs funny indeed but a great idea</p>
<p>why not program some messages on it, like, âIf you are calling with healing and support, thank you so much. Just leave a message. If you are calling to describe how your relative had it much better or worse than me, or how you âknow just how I feel,â press 0 and donât expect me to respondâŠâ</p>
<p>Hey that was great news about the obliteration/smashing/smushing of the bad guy cells.
I like what you said about radiation - it may or may not be a future treatment. Either way, itâs there if you need it. You had said the chemo was icky, so itâs some goodness to know at least it did its job for you to offset the ickiness.</p>
<p>paying3tâphone messages LOL!</p>
<p>I hadnât realized lung cancer was the leading cause of cancer deaths. Of course, âthe worldâ includes many more smokers than we have in the U.S., courtesy of one of our great cultural exports. 
</p>
<p>Around here everyone (many women I know personally) seems to be getting breast cancer. I guess among women of a certain age group, it is the leading surprise disease, anyway. If you donât have a predisposition with a family history, it is a shock.</p>
<p>I hope all this research leads to methods to prevent this scourge once and for all. Chemo and radiation seem so muchâŠoverkill, for lack of a better word.</p>
<p>Marite, thank you for the link. Lung cancer gets only a small fraction of the research dollars per death as does breast cancer, etc., in spite of killing more people than any other cancer combined. Over time hopefully those brilliant minds will find some way to combat this. </p>
<p>Mommusic one of the confounding, frustrating things about this is that many of us do not smoke, nor have we ever. There appears to be no reasoning and no logic as to who gets this. While I was googling my way into serious despair I discovered cases of persons as young as 27 getting this same cancer, who have also never smoked. To a person they are all dead now. Even more confounding, some of the long term survivors I have found still smoke cigarettes. And there doesnât seem to be any commonality in terms of diet, exercise, etc. in terms of who lives and who dies. I also read some statistics last week that said that something like 40% of persons who have surgery for lung cancer and who quit smoking at diagnosis resume smoking cigarettes within a year of surgery - data like this isnât going to be very motivating for researchers, Iâm afraid. Yesterday, the radiation oncologist told me that the one long term survivor she had in her former practice (18 months) didnât smoke, but drank alcohol - daily. The woman lived her life in bars. The radiation oncologist explained this to me as part of her lecture to stop stressing and find ways to relax - she believes that this particular patientâs nonchalant, relaxed (unebriated perhaps?) state of mind contributed to her long survival (though she was NOT advocating drinking, she was clearly agnostic on the behavioral aspect of alcohol use). </p>
<p>Thatâs one of the hardest things about this for me - I donât tell anyone except those who absolutely need to know and who have either a right to know or I have an ethical obligation to tell them, because of the stigma attached. It doesnât provoke empathy like other cancers; people think you smoked. Itâs sort of gross and icky and embarrassing. They likely wonât even ask âdid you smokeâ rather, they will just assume that you did or perhaps still do. I not only do not smoke, I do not even like or very much approve of alcohol, as I have posted in this forum more than a few times (no offense intended to those who disagree). About the worst thing I have done to myself over the years is (1) work too many hours; (2) eat too much restaurant food. I have always belonged to gyms, worked out, taken care of myself in term of physical fitness, etc. And itâs really weird to me to read that there are heavy smokers who are in their 60âs, 70sâs etc. who do NOT get cancer⊠</p>
<p>It seems that the path to beating this lies in genetics and DNA, the will of God, and the determination of the personâŠ</p>
<p>NJres, yes, it did sound very encouraging, and I am thankful for every positive thought, prayer, wish etc. said for me or thought of in my name. My doctors are also very optimistic, at least at this point. </p>
<p>DMD77 I do totally understand where your son is coming from. Have talked to my daughter endlessly about this because I still have problems getting my mind around her putting so much of her life on hold, but, it seems that she genuinely wants to be with me, and so your son wants to be with his parents, as well.</p>
<p>LTS,
Iâve found my kids want to be there and do things for me because it helps THEM cope. It was difficult to let them âinâ that way â I have tried very hard not to let this thing run our lives. However, if it gives them a sense of comfortâŠitâs hard to argue. They need to be able to do what they feel is right so that in the long run, they arenât wracked with âI shouldâveâŠâ </p>
<p>All that being said, a couple of friends were shocked at the geographic diversity of DS1âs college list. âWhy donât you tell him he canât go that far away from home?â I would NEVER consider telling him that. Iâve spent the past 5 1/2 years fighting like &*%$ to prepare him to launch from the nest! Itâs bittersweet and thrilling and sometimes overwhelmingly sad, all at the same time â but Iâm here to see it. Shehecheyanu! (Itâs a blessing thanking G-d for allowing one to reach this season/special time.)</p>
<p>Am VERY happy to hear you are responding well to the chemo and keeping your life on track. You live fiercely, my friend! :)</p>
<p>LTS, when you just have to tell, you can always start out the conversation with âI have nonsmokers lung cancer.â And everytime you speak of it to a nonmedical person, it can just be ânonsmokers lung cancerâ. That is not say that smokers donât get diagnosed with it, it simply helps to indicate immediatly that you did not smoke. </p>
<p>And silly really, but people relate to âstars.â So for the really uneducated, you âhave nonsmokers lung cancer, the same as Christopher Reevesâ wife had.â Then, in only a few words, people âget it.â</p>