<p>Huh? I asked my primary oncologist when he said this to me today. </p>
<p>His comment was provoked by my request for some reassurance. I almost never ask for reassurance, mostly because I know of no one who owns a crystal ball. Typically, I ask for the science. Give me the numbers. I can work with anything greater than zero. </p>
<p>But today, I needed reasurrance. I visited briefly with the radiation oncologist following my 5th and final treatment today; I was foolish enough to ask him for a prognosis, and the BEST thing he would say was “well, it’s a very challenging situation”. </p>
<p>In any event, when I left him, I went to my next appointment with my primary oncologist, and asked him for some reassurance, citing the comment from the radiation oncologist. He explained to me that others doctors are going to be extremely pessimistic: by the numbers, based on the January scans, based on disease course, based on every study ever documented, I should have died in March. </p>
<p>Instead, it is nearly July; not only am I not dead, but, I am working full time, fullly functional, and cancer aside, perfectly, enviably healthy.</p>
<p>AND we will keep fighting he said; there are still more chemos to try, even if this current plan should also fail. </p>
<p>I’m sort of troubled though - but I cannot put my finger on why. I think I am worried that my ability to pull off the “impossible” might run out…</p>
<p>LTS, I’ve seen a lot of people do the “impossible” many, many times over. There’s no reason to give hope that you can keep doing it for years and years to come! No one knows how long they have (or anyone else has), really, not even doctors…</p>
<p>LTS–I want to say: You don’t have to do the impossible; merely the improbable. I know that sounds facile, but I really believe that the difference between the impossible and the improbable is immense. One implies you need to be a superhero; the other that you are human, trying your hardest.</p>
<p>Of course, *we *all see you as superhuman, but I don’t think you need to yourself. Your human self is pretty darn strong, and I believe you will continue to change the odds from improbable to absolutely possible. over and over.</p>
<p>garland makes an excellent point. To have “done the impossible” is, on the face of it, impossible. What you have done is what the doctors had previously considered impossible. You have demonstrated that your accomplishment was not impossible, but “merely” improbable. The next time they are confronted with a patient in your situation, they will see what you have done as possible for him or her. So you are expanding the doctors’ perceived range of outcomes.</p>
<p>LTS, You are not a statistic. Repeat as needed. For you, your extraordinary force of will and level of proactiveness have taken you beyond what others might have predicted.
I am VERY happy to hear that your onc has more ideas up his sleeve! You had sounded concerned a couple of weeks ago that you were ruuning up against what they had to offer.</p>
<p>“I’m sort of troubled though - but I cannot put my finger on why.”</p>
<p>I’d say it’s probably because you have a scary type of cancer. Seriously, you’ve done a spectacular job of staying in a fighting frame of mind, but no one has perfect control over their feelings. You are a person, not a robot. You are allowed to have feelings of doubt and worry. That doesn’t mean you won’t maintain (and win) the fight. The most courageous soldiers are those who feel fear but fight on anyway.</p>
<p>Thanks for so many supportive responses. I very rarely let this thing (or any other sort of thing) to get to me, but, for some reason, today I allowed it. </p>
<p>CountingDown, I am worried, in that, it is stastically proven that small cell becomes more and more resistant with each new line of chemotherapy. From what I have read, most oncologists recommend hospice after the second line. By the numbers, they know that third and subsequent avenues of treatment are useless against small cell. And I am on the fourth line. I am guessing though that most patients are not well enough to be considered for a third let alone a fourth line. </p>
<p>So I am worried that if this does not at least stop the disease, we are truly going to be experimenting beyond this. </p>
<p>Having said that, the studies also show an over 80% response rate to this particular chemotherapy regime - and these are patients with refractory disease. My oncologist showed me the study today - I didn’t ask to see it; he offered it. </p>
<p>I need to find some way to recapture my natural state of hope and optimism…I mislaid it somewhere, this afternoon…</p>
<p>“I’m sort of troubled though - but I cannot put my finger on why.”</p>
<p>LTS, perhaps it is because what you just went through is the first time that you face a treatment to palliate an uncomfortable symptom. Having self-doubt and wanting reassurance at this juncture is natural. Hopefully, the treatment gives you time for your chemo, which is what you need to beat this beast. Best,</p>
<p>LTS: Time to call a good friend and repeat that last sentence about reclaiming your hope and optimism. Certain friends are always good at this. Go out tonight. </p>
<p>80% response rate is something to hang your hat on.</p>
<p>Rather than looking for reassurance about the future, which seems pointless in light of the various statistical projections (of which you’re only too well aware), and surrenders your sense of well-being to things outside of yourself and beyond your control, why not focus wholeheartedly on what is at hand - this day, this moment?</p>
<p>That’s all any of us has, whether we’re “ill” or “well” - right? </p>
<p>And the only statistic that would seem to mean anything right now is this: whatever may happen later today, or tomorrow, or the next day, or the next, at this moment you’re 100% alive.</p>
<p>Something that Albert Einstein once said (and that was quoted in something I posted a while back) comes to mind: “There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” </p>
<p>Why not live your life as though, this very day, this very moment, everything is a miracle?</p>
<p>Doing so might not make you feel more “optimistic” about the future, but it would likely leave you feeling more alive, more buoyant, in the present.</p>
<p>LTS, if you watched any of the Tim Russert memorial, you are like all of us, somewhat down from that.
80% is very encouraging…good thoughts from south jersey</p>
<p>Something about what epistrophy posted reminded me of a book from the 70’s called “Inner Tennis.” The advice it gave was to play each point, indeed each shot, purely in the moment, focusing only on that particular shot; to erase from your mind the last point or the next point, the last game or the the next game, or how far down you might be, etc… </p>
<p>Essentially, in tennis, there is no clock, so if you’re still playing you can still win. I think that philosophy applies here.</p>
<p>Epistrophy, thanks for that, but, my brain just isn’t wired that way. I execute my life in long horizons. Last month, I signed the single largest contract of my entire career. I have been in legal negotiations with my client’s company for two years. With the original participants the entire time. I’m not kidding. The rest of my work is the same way. My life is that way. I am not a “live for today” sort of person, never have been. </p>
<p>I do totally get that all each of us has is this moment; today; tomorrow is not guaranteed. But I work and live with an eye on several months/years out.</p>
<p>My optimism has to come from seeing beyond the election and crafting my next steps. I frame things out in months. I am scheduling November and December meetings. I have no idea what I am doing for dinner however. </p>
<p>I need to recover my optimism; I do not like feeling like this.</p>
This statement communicates two things to me, LTS:
Your oncologist is doing well by you and has you on the BEST current treatment plan for your situation.
Your oncologist understands and respects the way you work and considers you a partner in treatment with a right to full information. Many doctor/patient relationships are not that way, but your doctor is “just what the *patient *ordered” LOL.</p>
<p>SBmom, just tracking back to what you posted re Epistrophy’s post - you’re right I guess. I just wrote out the dates and see that I am ten months into this disease. My two year long contract negotiation was one hit of the tennis ball after the next. Sometimes, on the phone with legal counsel from both sides there were very spirited discussions. There were some concessions that both sides refused to make. But over two years it never once occurred to me that I would NOT land the contract. It just never entered my mind as a possibility. Because I’m super stubborn, and I play to win. And that is some of the best work of my career, what went into that contract, and especially what continues, now that I am serving my new, hard-won client. A very, very named, blue-chip client. </p>
<p>Maybe this challenge will be the same…</p>
<p>JEM, that study is in my chart, as it turns out. I usually read my charts when I am in the exam room but for some reason I overlooked the study - do you think they always put the studies in the charts?</p>
<p>I think you are going about it the right way: plan for the long term, but live each minute to the fullest. As long as you’ve put your affairs in order, just use as long a horizon as you would if you did not have lung cancer. Think how different things would have been if, ten months ago, you’d given in!</p>
<p>^^^ (to post 3260)
I do not know what is generally done, but in my experience “studies” were never a part of my chart. Just my own records would be in my folder. My oncologist and I might on occasion discuss studies very briefly, but that was it. (And I was very happy with my oncologist and tried to be well informed but freely acknowledge I am not anywhere near as dogged as you, LTS!!!)</p>
<p>It seems to me that your oncologist is partnering with you on a level that is not typical. I think he knows you are an excellent partner to have!!! :)</p>
</p>