<p>An article from the Huffington Post…a little simplistic compared to all of the research OP has done…from Dr. David Katz on cancer prevention and attempting to stay in remission.</p>
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<p>[David</a> Katz, M.D.: 6 Habits That Can Add Years To Your Life](<a href=“HuffPost - Breaking News, U.S. and World News | HuffPost”>Six Habits That Can Add Years To Your Life | HuffPost Life)</p>
<p>It’s the line about the “veritable quest” that made me think of the OP.</p>
<p>Between “When” and “If” – A thousand Shades of Grey</p>
<p>A few weeks ago, we went to Jon’s high school graduation ceremony. I was happy to see him conclude his “juvenile” status on a high note –with much personal growth and with a full ride Army ROTC scholarship to a prestigious university. Yet, clearly for this kid, the best is yet to come. I said to myself that Jon’s graduation from college and commissioning as a US Army officer will indeed be a very special occasion since it is all about his dedication to hard work for the life’s goal that he chose for himself from the time of toddlerhood (I never thought one of my kids would become a solider!). He prepared all four years of his high school to win the scholarship and will have spent four years in college to emerge as a top Army officer. I was saying to myself, “I will be so proud of him when I see him commissioned”. Then, in mid sentence, I noticed a hint of hesitation in my inner voice with the word “when” — should I use “if” instead? </p>
<p>I have always been a stickler for a precise choice of words – perhaps it is my attempt to overcompensate for the fact that English is not my native tongue. Regardless, I have always been vain about my ability to articulate abstract concepts with precision and emotional nuances with colorful visual imagery and out-of-the-box metaphors. I often choose a book for the beauty of the language and words, not the most exciting plot. As a mystery buff, I used to read and re-read Dorothy Sayers’ books over and over again. Some might ask “Once you know the plot, what’s the point of re-reading a mystery book?” Ah, but we are talking about Dorothy Sayers – she may have written popular mystery books – not exactly the most profound thesis on the meaning of life and death, but her language and choice of words are exquisite – practically delicious. I read her sentences just as a gourmet explores a sublime taste of an exotic chocolate. Agatha Christie may be a good story teller but her words do not have this allure – they do not inspire. Same with the science fiction – another hobby of mine. Issac Asimov has wonderful story lines and power of imagination, but his words are insipid. It’s Frank Herbert’s language and words that excites me as they come alive in my head.</p>
<p>Up until eight months ago, most of my sentences about future events started with “when”. Now, for anything that is a couple of years or more into the future, I sense a familiar hesitation, an uncertainty on my part. If I were to make a choice each time between “when” and “if”, an anal book editor in me with a fetish for a precise word choice should and would choose “if” most of the time. Yet, I invariably choose “when” instead. Partly because I do not want to sound like a drama queen who constantly draws everybody’s attention to her problem. More importantly, because I do not wish to demoralize my husband and kids by reminding them of the precarious nature of my future going forward. Yet, it is hard not to be aware of the reality that I can no longer take it for granted that if I want to, I can do this and that a few years down the road. As such, most of my when’s these days are a conscious choice over if’s against a better probabilistic judgment.</p>
<p>On the online forum of ovarian/uterine cancer patients, I started, for fun, a thread titled “Stupid Things People Say About Deadly Diseases”. Though there were some real gems that gave all of us a good laugh, the most common one was some variety of “well, we all could be hit by a bus tomorrow” line. I suppose it’s an awkward attempt by those who are fortunate enough not to have ever dealt with life threatening medical issues to make us feel better by pointing out that the rest of world is not better off than we. The difference being, we are more aware of our fate while those ignoramuses are happily going about with their routines not knowing what awaits them. I guess ignorance can indeed be bliss.</p>
<p>I am reminded of Cassandra of Troy. The common understanding of her curse is that she knows the future, the pending doom, but nobody would listen to her. The emphasis is on not being listened to. But one could easily argue that the true curse lies in the fact that she was given the power of prescience to begin with. When good things happen, the foreknowledge robs you of spontaneous joy of a pleasant surprise. When it’s a catastrophe and disaster, it dooms you to premature despair and amplifies the punishment beyond what the fate intended to mete out to you. I remember a Korean legend about a king who executed a famous fortune teller who had an uncanny ability to predict the future of anyone who sought his service. Those told of their good fortune in the future simply idled away their time waiting for the amazing luck to strike them. Those told of the pending misfortune resigned to their fate in despair. Either way, the fields were untilled and the animals unattended to. </p>
<p>But, what if Cassandra’s prescience had been truly a gift, not a curse? What if Trojans had listened to her? Then it could have been Hector dragging Achilles’ body around the walls of Troy. Odysseus’ ten year journey back home may not have taken place. Electra may have had no reason to seek vengeance on her mother. There is a thin line between a curse and a gift of knowing what awaits us. A curse, if you conclude that there is nothing you can do to change the chain of events. A gift if you conclude that with the foreknowledge of what might happen, you can affect the outcome. That what the oracle showed you may be the most likely future, but not a definite one. That between “likely” and “definite”, there are thousand shades of grey , and at any given moment, the eventual outcome can move along this spectrum wildly. That ultimately, you have the power to move as close to the lightest shade of grey on the spectrum as possible.</p>
<p>For patients with a life threatening diagnosis, I believe the prognosis is like this oracle as a gift, not a curse. It tells us the most likely outcome. Some people with my diagnosis may decide to “enjoy” life to the fullest now, whatever that may be. A surrender, even if it’s a bitter variety, not sweet, can be powerfully alluring. But I am one of those fools with the delusion of grandeur to believe they have the power to rearrange the likely outcomes – radically! I believe I have the power to change many if’s to when’s not by wishful thinking but by actions and choices I make on a daily basis. Furthermore, I believe between “when” and “if”, there are thousands of shades to choose from. Even if I fail to change all the if’s to when’s, every time I bring an if a shade closer to when is a victory. This is what I should strive for every day. My survival is a matter of painstakingly bringing as many if’s as close to when as possible. I intend to be a Cassandra with believing acolytes who will heed to her prophecy to change the course of the future. </p>
<p>I must admit though that this is not a unidirectional journey. Not all of my if’s move a shade closer to when as time goes by without retreating. There are days when they move back several steps – when I look at myself in the mirror and notice a twinge of fear in the corner of my eyes, when I lose a grip on something I was holding due to a belated onset of neuropathy a month after my treatment was over, when I read about the passing of a woman I got to know through on line information exchanges…… Yet, as paradoxical as it may sound given the common assumption that people with my diagnosis are living on a borrowed time, the inexorable march of time is the most powerful engine for the forward movement from if’s to when’s. Survival odds get better every day the patient survives, and this is especially so for advanced stage cancer patient. The five year survival odds for someone like me nearly double if I passes the one year mark. Every time I have another serving of kale and broccoli, a few of my if’s move a micro inch closer to when. Every batch of blood results that comes back normal move them a fraction of an inch. Every scan that comes back clean sends a few if’s all the way to when – a home run! </p>
<p>All things considered, my progress is directionally correct – as they would say when they monitor troublesome business affairs. But, it’s a dynamic process – the storyline of this drama is still being written, and there is no guarantee which direction it will head, and where it will eventually rest. I would like to believe that I am the principal writer, not some god in Mount Olympus that sends down the oracle etched in stone to hapless Cassandra. Who knows, there may even be a point of time in the future when I get fully rehabilitated into the “civilian” population full of people who never hesitate to use the word when. As it stands now, I am still watching these people from a distance with a twinge of nostalgia and a trace of shameful envy.</p>
<p>Last week, my husband and I went to Chicago to visit Daniel who is staying on campus there this summer for the internship he got with a firm in down town Chicago. What was supposed to be a short vacation filled with visits to the museums, architecture walking tours, and a survey of nice restaurants turned out to be three solid days of furniture shopping at IKEA and assembly work in Hyde Park in an off campus student apartment. Yet, this was the most emotionally rewarding vacation ever for both my husband and me. Daniel expressed such a delight at having a nicely appointment room with matching furniture and bed linen accessories. His almost childlike and innocent sense of joy and outburst of genuine gratitude for our “service” touched me deeply. I must say, though, inspiring these two unskilled day laborers to finish the furniture assembly work was a hard work on my part– they delighted so much in talking about politics, ideas, philosophy, and the meaning of education when they should be paying 100% of their attention to the task at hand…. </p>
<p>Toward the end of the trip Daniel said “Mom, I am so glad that you are determined to do everything you can to be a long term survivor, because I want you to be around to teach my kids your values.” I was almost in tears. Yes. “WHEN” I get to spend time with his kids, and if he and his spouse are still interested in having me pass down my values to them, I will savor every moment and opportunity to do so. In order for this “when” to happen, I need to turn a lot of if’s to when’s along the way. Daniel just gave me the biggest incentive to do everything I can to achieve that feat. </p>
<p>Oh, regarding the “Stupid Things People Say…” thread, my contribution was the question I got from a health insurance agent when I called to make sure that all necessary preapproval, if any, was in order for the major abdominal surgery I was scheduled to get (total abdominal hysterectomy with concurrent removal of all other reproductive organs). She asked “Is it an in patient or out patient procedure?”</p>
<p>sunrise, I hope you sorted out the issues of rights to what you post here. This last post is a masterpiece. Inpatient or outpatient, indeed! (Although these days, who knows?)</p>
<p>I was interrupted partway through reading this post, and while away from my computer I had that thought that you address so eloquently - I thought that, although I assume “when,” it is really “if” for all of us, especially as we get older. Then I came back to read your thoughts on this. Your ideas are so original, and you write beautifully in English, second language or not. </p>
<p>What a lovely time you had with your son!</p>
<p>A very wise gym buddy who lost his only son seven years ago has a family history of difficult medical issues, but he makes every effort to keep himself fit. He made a remark that resonates: that all us, sooner or later, will walk out of the doctor’s office with a bad diagnosis…just a matter of when and what. Bodies fail. We are all in the time of “if”. Meanwhile we live.</p>
<p>You are stunningly eloquent</p>
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<p>MYmomof2,</p>
<p>I finally got a response from CC. I can use any of my OWN material posted on CC for any commercial purpose. Now that it’s clarified, I would continue to post my essays. </p>
<p>Thanks for reminding me!</p>
<p>I have been moved beyond description by your words.</p>
<p>You are a treasure.</p>
<p>Sunrise, I’m so glad you have control of your posts here on cc. It would be a shame to not be able to share your beautiful words with the “outside world”!</p>
<p>so, I was at Memorial Sloan Kettering Cancer Center in NYC today for my cancer vaccine shot as part of the trial I joined.</p>
<p>While I was waiting for the vaccine to be thawed for injection, I ended up talking to a gentleman sitting next to me. Turns out, he is an MD (not an oncologist) whose wife was going through a chemo treatment at MSKCC (she has the same cancer as mine). Soon, he and I are discussing clinical trial options, latest research outcome for the cancer both his wife and I have, various treatment modalities, etc.</p>
<p>His wife chimes in and tells her husband “how come we don’t have discussions like this, you and me” To that, he blurts out “because she is far brighter than you!”</p>
<p>Oh.My.God!!! </p>
<p>If she had signed a prenuptial, this would be justifiable ground for its nullification.</p>
<p>Maybe she just went home and put something in his coffee instead. :D</p>
<p>Wonderful post 742, sunriseeast! A terrific piece of work.</p>
<p>I think she should keep him a little while longer. During the conversation, it was clear that she did not want to know anything about her condition (too depressing), and he is taking a super good care of her both as a husband and an MD. He is not an oncologist or a cancer specialist, so his learning curve was also steep, and he is doing all this for her. Obviously, he loves her!</p>
<p>The Anatomy of Optimism Are you a Giraffe or an Ostrich?</p>
<p>When my hair started to fall out, I had my husband shave it to half an inch from the scalp. Interestingly enough, some strands kept on growing through the chemo treatment phase while others were falling out. Among those that grew a couple of inches, a few of them were grey. One evening, my husband caught me standing in front of the bathroom mirror and pulling these few, pitiful grey hair from my mostly bald head. He started to laugh hysterically. I turned around, and said Dont laugh. Its this kind of unhinged optimism that will let me outlive you. Now that I think about it, I have to admit the scene must have seen quite comical. </p>
<p>One of the common marching orders cancer patients get from friends and relatives is to be positive and optimistic. I know they all mean well, but this actually is quite annoying. What, now, on top of everything else we need to deal with, we have another action item to follow up on? That, we can just will ourselves to be positive and optimistic? Positive for what, for whom, and how? Furthermore, even if you can manufacture an optimistic attitude on demand (there are ways to do it, some legal, some not), precisely what does it really mean and how does it do its magic? You become positive and optimistic, and poof, a miracle happens and you have a spontaneous remission? Just like that?</p>
<p>I am a bit sarcastic here. In support groups, cancer patients routinely show support for each other by saying I am sending positive thoughts to you. Of course, a positive outlook helps. Some researchers are starting to discover that there is an actual neuro-immunological ground to support a hypothesis that minimizing stress has a very positive effect on cancer management. So to the degree that optimism keeps anxiety and fear at bay, and thus lowers the stress level, it may provide a bit better prognosis for the patient. Some people believe positive energy unleashed by optimism will have an impact on their prognosis in and of itself. I will allow this also - to a degree. Who knows, maybe there is indeed something called universal energy, and one needs to harness it through positive thinking. I am not a subscriber of such a belief, but many are, and I dont feel I have the final say over whose belief is correct. </p>
<p>I suspect, though, the role of optimism and positive thinking alone, in isolation of actions that accompany them, is rather limited. I believe optimism must be earned, justified, and rationalized. If it is not grounded on facts and followed by actions, it is at best wishful thinking and at worst delusion. If a lung cancer patient is so optimistic and positive about her survival odds that she continues to smoke a pack a day, what would be the consequence of her positive thinking? I am a big believer of optimism and positive thinking because of what it may encourage the patient to do. It may give her a sense of control over the future course of events, which in turn motivates her to gather information on what needs to be done and do it. It may enable her to make a rational decision on her treatment course without fear induced intellectual incapacitation
Among patients facing life threatening medical conditions with a very poor prognosis, you can find two extreme groups. One group, I will call them an ostrich, do not want to know much about the disease. It is too scary and threatening. It overwhelms them and challenges their sanity. I certainly understand this sentiment. Right after the surgery, I spent about a week being an ostrich with my head buried in the sand deep. Couldnt even look at my scar, let alone going on line and doing all the research on post op issues and treatment plans. Didnt open my email in fear of reading something from well meaning people asking me how I was doing, because that would mean something happened to me. I wanted to pretend nothing really happened. It is so ironic. Since this whole affair started, that was most improbable time to fake normalcy. With a fresh, unhealed incision scar of 14 inches, I barely managed to walk around the house, hunched over with one hand over my abdominal area. </p>
<p>In the end, I realized that I had to pull my head out of the sand: I was starting to suffocate there without any insight, data, knowledge, and, most importantly, a plan of action a project management template. So, I decided to be a giraffe instead, sticking my neck out to survey the landscape as far out as possible. In fact, I developed genetic mutation to add several feet to my neck I am a giraffe with the longest neck in the recorded annals of great giraffes . I am an avid, some may say morbid, consumer of all the mortality statistics for my diagnosis. I meticulously collect them and analyze them with a cold passion and a macabre precision of an actuary. No, this is not a form of self flagellation, though this is a sin I have been often accused of for other things. Nor is this a twisted attempt to exaggeratedly advertise the severity of my condition to garner maximum sympathy from others. Instead, its a matter of sizing up my adversary. </p>
<p>Who are you?
Are you as scary as they all think you are? Or are you bluffing?
Though you pretend otherwise, surely you must have weaknesses. What are they?
If I cant beat you, can we at least sign a treaty for peaceful coexistence?</p>
<p>I read enough statistics that put my five year survival odds at low single digit numbers given the initial diagnosis and suboptimal surgery results. Discovered at my stage, my cancer is not supposed to be curable, and even if a patient manages to get into remission after the initial surgery and chemo treatment, a recurrence within a couple of years is a near certainty. </p>
<p>O.K. I got you. You really are a scary monster. You have armor with spikes sticking out all over. Your face mask is a work of art and truly awe inspiring in its ability to induce a catatonic mental state among your foes. Like Medusa. I am sure you won many a battle with a sheer terror you can induce without actually charging forward toward your adversary. BUT . Are you really that scary for sure? Beneath that seemingly impenetrable armor, is your flesh too hard as a nail? What lies beneath that Medusa face mask of yours? </p>
<p>As someone with a Ph.D. level training in statistics, numbers do not impress me in and of themselves, unless I have every reason to believe that they are indeed legitimately generated and reflect my profile well. When I saw the published stats, I decided to learn how they were compiled, who the average patients were, and what kind of care these average women get. What I discovered was that these statistics were very poorly constructed with an egregiously unrepresentative sample with many methodological flaws. And, I came to a conclusion that with a perfect health other than the advanced cancer, diagnosed at a young age of 51, with ample resources and access to the very best care, I am already at the far right side of the statistical distribution curve an extreme outlier. Furthermore, survival statistics are by nature a retrospective affair. The numbers we see now reflect how the women diagnosed 10-15 years ago fared. The only way these odds apply to women recently diagnosed is if we assume that no advancement has been made during last couple of decades, and none will be made next 10 years or so either. As much as I am impatient with the lack of a rapid progress in the field, I empathetically disagree with this statement. By the time I reached this phase of my research, I already upped my own personal survival odds ten folds. </p>
<p>You are not as scary as you present yourself to be. That Medusa face of yours is a poor replica of the real thing. Now, let me see if there are weaknesses that even you are not aware of. </p>
<p>When I started to do research on treatment options, it became clear that surgery and chemo therapy are only part of the equation, and the western mainstream medicines obsession with the cut, poison, and burn approach for cancer management left the whole field of potential advancements unexplored. Its the whole body approach the role of nutrition, diet, exercise and the mind-body connection. I am convinced the next breakthrough will come from this unexplored territory. So what is my winning strategy for striking gold? Not by scraping the bottom of the mine already picked clean. But by exploring a new mine down the road. There, I intend to find the mother lode. I researched on all things that might prepare my body to protect itself better, keep cancer at bay longer, and keep me healthier things that will let me be the long terms survivor. So, for my tenacity to keep on learning about more ways to handle my cancer better and the discipline to do whatever is necessary, I am again doubling my odds of survival. Twelve servings of cancer fighting vegetables? Check. I will up it to 15 servings. Daily exercise of 30 minutes? Check. I will do one better 75 minutes. Good support network? Check I am giving more than I take the best way to nurture a support network.</p>
<p>Now, I found your weakness. You are not omnipotent. You can be defeated. I must say the odds are still in your favor. But perpetual conflict is exhausting for both of us. We dont have to talk about outright surrender either way. Can we perhaps coexist? What are your terms?</p>
<p>The word cancer evokes a very powerful emotional reaction. Though the survival odds in general have improved significantly last 20 years or so, most patients with a very advanced diagnosis do not escape the doom and gloom once they realize that the word cure does not apply to their case. However, the more I learn about cancer its symptoms, treatment options, and prognosis, I realize that cancer has an undeserved bad reputation. I believe that the fear of cancer, even the advanced type, is greatly exaggerated. Cancer is far kinder to life than a lot of other debilitating diseases. Even an incurable cancer like mine is a disease that lets you live a relatively and, in many cases, completely, normal life in between bouts of treatments that may be spaced months at the minimum or many years if one is lucky. Even if a cure is not possible, decades long remission is. </p>
<p>I will take cancer any day over a chronic heart disease that does not let you climb Mt. Kilimanjaro, or MS that gradually incapacitates you, or a kidney disease that requires dialysis and does not allow you to leave town. Cancer can be maintained like a chronic disease. In any oncology wing, there are patients who have been on some form of chemo for close to 20 years, with a relatively good quality of life attending their kids graduation ceremonies and weddings. You do not need to be necessarily cured to have a good quality of life for a long time. You do not necessarily need to have the survival odds of 90% NOW to be hopeful for the future. You need to hang around just long enough each time for the next breakthrough. I remember reading an article about a woman with a breast cancer who got only a few months to live. She lived a bit longer than that just long enough to become the first patient in her state to receive the latest experimental drug, which turned out later to be the breakthrough treatment for women like her. </p>
<p>I agree you are a formidable adversary. Actually, I do not loathe you. You took away certain things, but you also gave me a lot back. Lets co-exist. I will let you have your moments once in a while. You let me live my life peacefully in between. In the end, you may even find that it works out better for you to stay at peace with me indefinitely!</p>
<p>I am very optimistic for my future prospect. I believe I can beat the odds with the widest margin and emerge as an extreme statistical outlier. After all, I have already beaten the odds I managed to go into remission after a standard treatment against heavy odds. I worked very hard to develop this optimism - I had to become the giraffe with the longest neck to survey the land and find a greener pasture far over the horizon that is not a mirage or a product of a hallucination. It is optimism based on facts and reason, not denial, wishful thinking, and ignorance. It is optimism of a giraffe, not an ostrich. Most importantly, it is optimism which I endeavor tirelessly to justify, rationalize, and back up. And, I intend to do that indefinitely. To me, optimism is not a blind faith that one day a knight in shining armor will come along and sweep me off the feet. Rather, it is a conviction that there is indeed an accursed prince to be freed, and dogged determination to kiss as many frogs, toads, and for that matter any four legged amphibian creatures shorter than a foot (not even an optimist should tempt fate by trying to kiss an alligator), until my lips are covered with blisters. This is the anatomy of my optimism the willingness to do thousand things that will each increase my odds by 0.1% at a time. </p>
<p>I cringe when some well meaning people, upon learning about what I went through and what I am dealing with, casually order me to be positive. I am zealously protective of my special brand of optimism and would rather not see it trivialized and cheapened by some Hallmark style single line catch phrase. For those with a compulsion to induce positive thinking on others, I have a suggestion. Instead of ordering the patient to be positive, do something that will make her feel positive. Show her how the published stats are outdated and her actual prognosis is much better. Take her out to lunch and make her laugh. Share an article about effective new treatment options that are being developed. Show how you care, not just in words, but in your action and deeds.</p>
<p>I have a note on my office wall. It simply says, Sunriseeast. You are an inspriration, through your sharing, your bravery, your outlook, and the beauty of your words. Thank you. Best wishes. Forever.</p>
<p>I repeat Somemom’s comment above … “You are stunningly eloquent”…!</p>
<p>I can only echo lookingforward (except for the note on my office wall -maybe I should put one up, as well). Those are my sentiments, exactly.</p>
<p>^^What they said.</p>
<p>Sometimes prescribing optimism makes people think they brought the diagnosis upon themselves by not being “optimistic” enough. And if they don’t recover it’s their own fault for not being positive enough…akin to not praying hard enough or something. This sort of thinking is not good for your mental health. </p>
<p>Fight on! :)</p>
<p>thanks everybody for such kind words! I am actually on the path of compiling my essays as a book. there are many more essays I would like to write - the themes all mapped out. It won’t be a “how to beat cancer” book, like the ones you see all the time, especially those written (or ghost written) by celebrities. It will be a book of personal reflections. No incendiary statements about the evil big pharma companies or egregious malpractices by incompetent doctors. No get well quick voodoo treatment and therapies. As such, i don’t expect huge sales. </p>
<p>But I hope it will be a book my kids will proudly show to their kids!</p>
<p>Since CC gave me a green light that I can use my own original content for commercial use later, I will continue to post my essays here. </p>
<p>I know I am not thanking everybody individually, but please, please understand you all have me a great deal of strength and hope. Thank you so much.</p>
<p>Brilliant!! “Instead of ordering the patient to be positive, do something that will make her feel positive. Show her how the published stats are outdated and her actual prognosis is much better. Take her out to lunch and make her laugh. Share an article about effective new treatment options that are being developed. Show how you care, not just in words, but in your action and deeds.”</p>
<p>So, when can we look for the book?</p>
<p>I have a close friend battling the melanoma monster rd #2 (a few shadows trying to inch their way back) that will be heading to Sloan Kettering soon for additional treatment & opinions. Best wishes to both of you!</p>