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<p>You are not allienating me at all, and I already knew the odds in general terms. I just wanted to give you something to make the cup look a bit more full than empty, and the story that I told you is 100% true, even though I realize that you have a totally different cancer. I agree with GLM, and I know that you are going to fight this thing with all of your might. In fact, you are doing that right now.</p>
<p>Greatlakesmom, I appreciate that, I really do. Some days it just all simply descends on me and gets difficult. Usually it impacts when there is a sudden avalanche of information that I wasnât really looking for and could have done very well without. </p>
<p>In the past 12 hours Iâve had the negative exchange with the oncologist, update/confirmation of the 27 year old lawyer, newly married and never-smoker in Manhattan who just died of this exact same cancer, Johns Hopkins saying âyep everyone relapses/recurrs then everyone diesâ, etc., and then the trial researcher could only find the two trialsâŠanywayâŠI do try very hard to not let these things get to me, but, this is one of those very difficult days where I am sitting at my desk, trying to do my work, and my horizons are always long, and so I wonder if I will even be here after the first quarter of next year to enjoy the result of my efforts - let alone all of the other things I have always dreamed ofâŠsorry for my lapse, just having a very bad dayâŠ</p>
<p>LTS:</p>
<p>I am so sorry you are having a bad day. Having cancer is like being on a roller-coaster emotionally. In our work, we need to have some long-term planning; but we also need to take one day at a time and not let long odds depress us. Statistics are just that. Itâs not helpful to know that in 99% of cases some medical devices is entirely successful if you happen to be the 1% exception. But it is helpful to know that you can belong to the percentage of people who can beat various types of cancer. Remission is what to aim for. Not total assurance of being cancer free forever.
Anyway, think of today as one of your bad days. Youâre entitled to them. But it need not be the norm for all your days.</p>
<p>Youâre allowed your difficult days, as we all are. Life can be a roller coaster, but Iâd think cancer might heighten the emotional drops and climbs. If you were here, Iâd make you some tea, and rub your shoulders. Find a way to shorten the horizon for a few hours, and do something kind for yourself.</p>
<p>LTS, thanks for the additional background, and my apologies if I strayed into inappropriate territory in referring to the Yale site, which I thought might be material for a rebuttal to the negative oncologist with whom you spoke yesterday. </p>
<p>Certainly, I only mean to support your belief that your particular approach can make a significant difference in which category of the data you fall into. </p>
<p>Please have no concern about venting here to any of us about anything, including what one of us says (provided you stay within the TOS, LOL!) 
That is one privilege to which you are entitled â you can use your âcancer cardâ to vent freely. </p>
<p>You have been dealt a very challenging hand but I do believe that you will play it exceptionally well.</p>
<p>JEM, thank you for your sensitivity. I do still require credible information, however, the hole I keep falling into is that (in spite of having people at the ready to do this for me), I cannot keep my hands off the search engines, and I cannot stop searching for ways to help myself, and, so, stupidly, in my search for information, I run into things that simply break my heart. The 27 year old lawyer is one story, and, I just read the story of a family who was told to take their beloved father home to die. He is working full time (just like me) had an excellent physical prognosis at the beginning (just like me) and the family is having such a difficult time understanding how this very robust, outwardly healthy, active, hard working man and loving father and non smoker (just like me except Iâm a mother!) has been given maybe two more months, and, the family has been told to call hospice. (They are not ready for hospice yet and are going to seek a second opinion it sounds like.) Then, I also read the story of a woman my age, came through first line of treatment and achieved full remission, relapsed, second line worked but then didnât, and she died last week, 11 months after diagnosis. </p>
<p>And thereâs no rhyme or reason to it. In the above examples, none of these people smoked cigarettes, according to the information they and/or their family members self-reported. Yet all of the long term survivors I have spoken to are former smokers, and one of them STILL smokes. Iâm not being accusatory but it sure does make it hard(er) to even try to figure out any reason for who lives and who does not. </p>
<p>It isnât the idea of imminent death that bothers me so much. Itâs what the families and supporters go through, and the heartbreak, and how very long and deeply they hurt. The person with cancer may actually have it far easier - at least once deceased they are no longer suffering. It seems though that the surviving family endures the brunt of the agony, and that all seems so terribly unfair. For the family members, itâs a horribly long period of stress, with great ups and terrible, unthinkable downs, and, itâs so hard for me to imagine how my 22 year old is left standing out there, all alone after such a journey. My heart positively breaks for her, just imagining it⊠</p>
<p>This onslaught of negativity is the hardest part of all of this - far more difficult than any medical treatment etc⊠I do know from personal stories, and from statistics (mostly from Europe) that there are long term survivors of this. I need to find some way to achieve a better balance of positive information and stories of hope, since I evidently cannot control my urges to research this, and therefore end up so emotionally derailed.</p>
<p>LTS: Last year I thought to donate in memory of a former colleague who had a case of melanoma when we worked together some years ago, after which she had passed through the five year screening only to find that several years after that it had reoccured. I thought that I heard that she had passed away, and made the donation. When I asked other colleagues if they would also donate in her memory, they expressed surprise that she had passed away, and I then learned that in fact she was still with us, though a lot weaker. She e-mailed me that she had been kept going, even with metastasis, for nine years - now more than ten years, by her doctors.</p>
<p>May we hear the same from you, ten years hence.</p>
<p>latetoschool: I am a compulsive researcher, too, so I understand. </p>
<p>Please feel free to PM to vent, be angry, be sad, rage or cry. I will just be there.</p>
<p>Iâm sure everyone here feels the same.</p>
<p>Yes, LTS, please think of this forum as a âsafe placeâ for you.</p>
<p>I can only try to imagine what this is like for you psychologically. </p>
<p>Do keep in mind however that oncologists are a breed apart. They are in a field in which a high percentage of their patients have challenging outcomes. IMO these doctors sometimes protect themselves emotionally by being conservative when asked about chances for survival. They thus head off their own disappointment in case a patient does not do well. Then when a patient has a better-than-predicted outcome, they can still celebrate the victory. </p>
<p>Further, patients who post online about their experiences or participate in support groups tend to be the ones undergoing active treatment. Once in remission and going on with their lives, they may prefer to spend their time otherwise. So what you see online may underrepresent those patients with positive outcomes. </p>
<p>Again, I hope you find nothing but understanding, release and support here. Please feel free to communicate how we can be most helpful to you.</p>
<p>LTS, I did a quick search on your cancer and found the following article on a current report of a promising new treatment. I include it, at the risk of adding to your information overload, in case it is not one of the trials you already know about:</p>
<p><a href=âhttp://www.forbes.com/forbeslife/health/feeds/hscout/2007/10/30/hscout609579.html[/url]â>http://www.forbes.com/forbeslife/health/feeds/hscout/2007/10/30/hscout609579.html</a></p>
<p>There are some beautiful posts here.</p>
<p>LTS: I am reminded by your story of relentless searching for good news of my own reaction to my husbandâs diagnosis seven years ago. His doctor gave me good advice then: âmake all the legal and family arrangements as if the worst will happen, then assume the best will happen, and get down to the business of making that happen⊠and oh, by the way, the internet information is dreadful, unreliable, if not downright dangerous. Stop it.â</p>
<p>And for everyone dealing with those with cancer and immunocompromised systems: get your flu shot now. Flu can be life-threatening to those going through chemo.</p>
<p>
This is just good advice for everyone. LTS, you are certainly facing a great challenge. But any of us could have an accident or heart attack or stroke at any time. Itâs good to be prepared.</p>
<p>DMD77, how in the world did you make yourself âstop itâ. I slide off the slope last night, when I received the CT and PET reports in email from Lombardi. I havenât been able to have the consultation with their team yet on account of my missing original films, and, while I forwarded the reports on to my Miami oncologist, it was too late in the day, and he didnât return my calls. </p>
<p>Now, I am NOT a physician, as I am sure everyone is aware. So I spent like hours looking up medical terminology on line in an attempt to read these things myself. I think I came aware with some vague comprehension that SUV numbers like 3.0 and 2.9 are good things, and the prefix âhypoâ just about anything is good. But there were other words in the reports that just simply quite frankly upset me terribly - âsuspicious ofâ in a sentence is scary, etc., and, so, the more I drilled into the internet to try to figure it out, the worse things becameâŠ</p>
<p>In any event, my Miami oncologist called me back this afternoon. He confuses me sometimes in his statements, but, he said that the scan reports do give him more information, but do not change the treatment plan. He said I am doing very well - âexceptionally wellâ he stressed, and that he is looking for a âcureâ here. Yep, he actually uses that word. And he MEANS it. </p>
<p>I then told him Iâd been on the internet, and what I found, and I confronted him with the realities of the typical course of this disease. He basically said well, he doesnât know what Iâve read, things on the internet can be true and not true, and, yes, the odds are definitely against me, but we are going to think positive. </p>
<p>I then asked him about long term - what about if the second line fails - given that nearly everyone has a relapse? He said weâre not anywhere near there yet - itâs a hypothetical, so weâre not going to address that now. (I wanted to accuse him of pulling Hillary Clinton here but heâs from Argentina I discovered so I was not sure heâd appreciate the humor.) </p>
<p>Bottom line, he said he believes that the correct way to approach cancer management is to address it one day at a time, and that right now, there is every reason to be optimistic. Issues such as what to do about possible preventative (extra) rounds of chemotherapy after the original six cycles, what to do in the event of recurrance, what to do if the that happens and the second line fails, he will address as or when they happen - IF they happen, he said. </p>
<p>Therein lies my absolute frustration. I live my life by long horizons. I am not a day to day sort of person - never have been. Even my work projects are months and years in the making. Today I am working on two contracts that have been in play for over 18 months - more than twice as long as the original remaining life expectancy I was given in the hospital on September 14. Itâs pure torture for me to look at my lifeâs work, and do the day to day activities that I do, and face that I may not be here to see how my work will turn out next year or the year after. PLUS I have always, always worked with multiple plans and backup strategies. I have done this with everything - most importantly with our finances, and my daughterâs education. I always have a plan B, C, D, etc. No exceptions. So itâs normal for me to just have to know âif, thenâ types of options. But my oncologist doesnât address this and firmly does not wish to do so until or unless it becomes necessary. </p>
<p>Thatâs it - thatâs all I can do. DMD77 I am going to do my level best to take the advice your husbandâs doctor gave to you, especially the âstop itâ part. </p>
<p>JEM, you make some very good points, thank you for pointing that out. The long term survivors I have spoken to do not spend their time â â â â â â â â around on the internet, writing posts in the lung cancer forums. They are out living life, although they are doing so between the scans. And I donât blame them - why would anyone actively choose to mire themselves in such misery? The survivors talk to me and they are very, very responsive, but they sure donât spent any more time on forums. </p>
<p>NYMom of 2, no, I did not have that information. Thank you very much for sending it, I will escalate it to the top of the âwatchâ list. The phase I trial is limited to 18 persons; hopefully it escalates to phase II quickly. </p>
<p>Dadofsam, thank you for that. It really does help.</p>
<p>SJmom329, I did that years ago. As a sole supporting single parent with no other living relatives itâs critical. After September 11 considering how much I fly, I made sure everything was updated and current, and, in the hospital in September I called lawyers in immediately.</p>
<p>Lol, LTS! Why am I not surprised that you have it all together!!!</p>
<p>Some of this hangs together. The upsetting comment from Johns Hopkins sounds like a thoughtless variation on your 20% success statistic. Didnât you say youâd found that after the relapse (95%), then thereâs still a success rate of 20%. Thatâs where Iâm picturing you triumphing. </p>
<p>The Argentinian oncologist is saying this in a different way by telling you heâs concentrating on each branch of the tree, and helpiing you through each branch with success, rather than distract himself by glancing at all the distant branches way down the road. For him, way down the road means months from now but youâre a longterm thinker so that seems close. Why should he â or you? â get discouraged today when you can cross each bridge as you come to it, with greater focus than studying all the future possible choices/bridges.</p>
<p>Maybe thatâs why the drâs advise staying off the INternet because we have trouble, as lay people, putting all that âavalancheâ of info into context or perspective. Not that weâre idiots, itâs just too much nuance and context to know how to fit that info into a manageable context for each individual patient. Still thereâs always the hope we might find something the drâs didnât hear about yetâŠbut sounds like they know what youâre reading about already, so you might be wearing yourself out to read âtheirâ stuff.</p>
<p>I think you made an IMPORTANT realization that your long-term plannerly persona conflicts with the guidance of medical people to âtake one day at a time.â </p>
<p>Iâm furious at the clerical error of the hopsital that sent the wrong film. Even if it only held you up for hours, and probably it held you up much more, I HATE that this happened to you at all! Pure carelessness on someone;s part, somewhere. You (and your D) do your jobs SO much better than that. Itâs unimaginable. At least the stakes were âlowâ over the mistake, but really, thatâs the only part of your posts today that made me angry!! On your behalf, of course.</p>
<p>What you wrote about your D made me cry. Of course you canât stand the thought of her alone without you. Thereâs nothing I can offer there except a cyberhug. That is really hard to fathom. Surely, it could happen tomorrow to any of us if a truck came down the road the wrong wayâŠbut we all share your heart on that image of your D. </p>
<p>How do you find the balance not to research (becauwse maybe rest is more helpful on a given day). Is your research (the team) coming up with anything good, or is it time to just let the oncologists continue and you seek a day of rest or soft musical enjoyment with D? Only you know, and at least that is a day-to-day decision where you can probably just feel whatâs right for that given day. </p>
<p>Go back to when you said, (Iâm quoting from memory here): Today I just had the feeling Iâm going to win.</p>
<p>That is the feeling we ALL have here on CC for you.</p>
<p>EDIT: And that Argentinean oncologist (tongue-twister, there) most importantly is expressing that âwinâ when he reminds you heâs treating you for a cure. He thinks you could win this, too. You will.</p>
<p>LTS, my degree is in nursing, and the medical terminology blows my mind. I canât imagine how someone who âdoesnât speak the languageâ can do it. During my years of follow-up care, I had to have regular blood work and occasional chest x-rays. The kind of cancer I had tends to metastasize to liver or lungs. I got the bill for an x-ray once, and under diagnosis it said, âRule out breast cancerâ - which was NOT the kind I had, and I freaked out. I knew that the term ârule outâ was used when they didnât have a diagnosis but were exploring different possibilities. I called the doctor in a hurry, and found out he wrote that because he just wanted to write something he was sure the insurance would pay. But it sure scared me.</p>
<p>I suspect I am somewhat like you. I like to consider all the variables and have a plan in place for each. I like to be in control. It is hard for me to not be. </p>
<p>When we were in Germany, and my life was chaos, we would go places on the weekends, and I would do the driving. My kids questioned it, since my H usually drives on longer trips. My H explained to them that with things so out of control in my life, driving was one way I could be in control for a little while. That was unusually insightful for my H.</p>
<p>You are managing to find many things to take control of, in a situation that many would just be helpless in. Good for you!</p>
<p>My thought was the same on the âbad newsâ style docs-- some of them may be steeling themselves mentally. Also, many patients do not inform themselves as thoroughly as you have, so they may have to deliver harsh news to head-in-the-sand people. </p>
<p>An example: I know someone battling breast cancer that has metastisized to the bone. When she told me about it, I went straight to the internet and in 5 seconds saw that this is âStage 4.â Meanwhile, she had no idea what stage she was in . She has no idea about survival horizons or odds. She has a positive âremission mentality,â which I support, but I can imagine her doctors might be uncomfortable if they felt they were feeding into a false, hyper-positive picutre of reality, especially insofar as her needing to âplan for the worst.â</p>
<p>I have to say I would be a researcher bee, just like you. I would want to ferret out that obscure clinical trial too. (Remember âLorenzoâs Oilâ?) I would also want to know about the long horizon too. It would stress me out NOT to do that. If trials are at all tricky to get into it seems very important to know about them in advance and know where youâll have to lobby to get on the list, or whatever. </p>
<p>Can you add in something else though, to swing the pendulum back? Like 1 hour internet means you have to do 1 hour of meditation, or visualization, watching comedy, getting a massage� Something to counter-balance the stress? Either that or picture the internet like a big pile of mud and rocks that you have to THROW AWAY as you are searching for the diamond inside it?</p>
<p>Sending you a hug.</p>
<p>LTS, one way I manage to âstop itâ was by doing something else. For a while, I read the financials of companies making breakthrough cancer treatments (youâd be amazed how much good info there is on drug company websites). Then I bought stock in one of them and got obsessive about that.</p>
<p>In all fairness, when my chondrosarcoma cropped up, the first thing I did was run to the internet, where I found out that one treatment was amputation above the cancer. That stopped me cold and I didnât WANT to read anything else. (Not necessary, thanks, as it turned out.)</p>
<p>But more seriously, at this point, youâre not going to find anything new. Really. Youâve done the searching. However, it does sound like you would be well served to learn what all the tests mean and what they indicate; you can use that information as part of visualization exercises (which DO work)⊠go inside, find those stupid cells, and bring along your best macrophages to kill them.</p>
<p>I was very fond of I Love Lucy reruns at a certain stage. Lucille ball is one of the funniest people EVER. And laughter is very good for you.</p>
<p>LTS: (referring to a way earlier post) if you are becoming a two-million-dollar-a-year person, you have become even more valuable than before and hence should raise your charges to clients.</p>
<p>LTS,
I read this today in the Los Angeles Times. Itâs the fascinating account of one man, with cancer, who used his work knowledge, mind and life experience to find a (still-hoped for) cure. Itâs inspiring in many ways, and his spirit, drive and fortitude reminds me of yours. </p>
<p><a href=âSending cancer a signalâ>Sending cancer a signal;
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