<p>A belated congratulations. I’m so happy to hear your wonderful news!</p>
<p>Belated congratulations from me, too. Such wonderful news. 
:)</p>
<p>A very belated good wishes on your super results. Wishing you all the best.</p>
<p>Now that my chemo treatment is over and I have been declared to be in remission, I have decided to explore what I could do to maximize my odds for a good long term prognosis. I have a cancer with one of the highest mortality rates diagnosed at the most advanced stage. I am optimistic for my long term survival, but realistic enough to understand “cure” is not the word they usually use for my condition, and recurrence is likely within a few years. My realistic goal is to have remissions that last long and manage recurrences in between with effective treatments.</p>
<p>I am exploring cancer vaccine trials and maintenance therapies with latest drugs on the horizon. As usual, I have been doing very intense research on these subjects. All of these options are experimental in nature. I believe when you have such a poor prognosis going in, the risk assessment analysis favors an experimental route with a large potential payoff. The kind of options and choices that will be too risky for someone with 95% survival odds for 5 years are worth the risk when you have 5% odds on the book – like me!</p>
<p>It so happened that a week ago, they held the largest annual cancer conference in Chicago. As can be expected of any large professional conferences, numerous research papers were submitted, many of which were results of the latest clinical trial outcomes. I have read all the abstracts of the papers related to my condition. And, I found some interesting common denominators. When researchers try to demonstrate the effectiveness of a new drug or a new therapy regimen, they compare the survival statistics of the new treatment against that of the “control group patients” who have gotten the standard, default treatment. When I started to read the papers, what caught my attention was not just how well or poorly some of the experimental treatments worked, but also the baseline survival stats – the stats of the “control group”, who got essentially very similar treatment as I did with a comparable diagnosis as mine. Study after study, the median remission length for women with a comparable diagnosis was within a range of 10-12 months. </p>
<p>This was a very sobering insight. Official survival statistics are available on the web. However, no official data is available on remission statistics. This is the first time I had empirical data that gives me a realistic view on remissions for women diagnosed at my stage. When I processed the implication of these numbers, I sat for a while with cold realization that, achieving remission after the initial diagnosis is only a tiny fraction of all there is to it when it comes to long term survival. Recurrence within 12 months of initial remission bodes poorly for the longer term prognosis as it limits the treatment options that are effective for the patient. Subsequent remissions are likely to be even shorter. One can soon embark on a full career of near constant cancer treatment with a worsening outcome at each successive try until all the tricks in the bag are exhausted – and we all know what this means……</p>
<p>Three weeks ago, I felt like I won the lottery. Getting into remission so easily after a standard treatment was never a given for me considering where I started. Now I realize that I have to beat even greater odds if I were to make good on my promise to my husband and kids that I will emerge a long term survivor. I haven’t even finished the victory lap, and the race is starting all over again.</p>
<p>On a short term basis, life might be easier if I were to believe that what will happen will happen, and it’s out of my hands. Fatalism can be very seductive. It absolves you of any responsibility and guilt. You get to do what you please and have a veneer of normalcy and freedom of choice. But, I am constitutionally incapable of pulling off such a feat. I have always been under the delusion that I have a choice to decide how I respond to a given situation and power to control what happens to me. I don’t know how much of my easy remission was due to pure luck and how much of it was due to my rigorous regimen of doing everything right, which, much to my husband’s dismay, included eating a bulb of garlic a day! in addition to exercise, visual imagery, dietary supplements and radically healthy eating habit. If I were to believe that my discipline to stick to this regimen helped me achieve remission, it goes without saying that I must keep it up to avoid recurrence. It’s one thing to do this for a finite period of time to emerge a winner for remission. Even for an incorrigible, self flagellating, Type A personality masochist like me, the prescription of life long commitment to such a regimen is a daunting thought – and can be downright depressing…. </p>
<p>All through my research, I have yet to read the first person account of having lived with the same diagnosis as mine for more than 10 years. If I were to be there to torture the grandchildren the same way I did with my kids by taking them to all the boring museums in the world, I would have to become an extreme outlier. Deep down, rightfully or wrongly, I am convinced that I can make it happen, but it will take an unusual commitment to doing everything exactly right. This cancer of mine is a formidable partner, and it will take an extraordinary feat to forge and maintain a peace treaty. Any moment of lapse can trigger a volatile reaction. I am reminded of a movie about a terrorist who planted a bomb on an airplane. The bomb was designed to go off if the plane dipped below a certain altitude. I feel like the pilot who will have to find a way to keep the aircraft stay afloat no matter what - indefintely. </p>
<p>And, there is no co-pilot. Ultimately, this is a lonely endeavor. Even those closest to me and love me dearly cannot do this for me. They can help, cheer, and encourage, but they can’t take the helm. It’s easy to forget what a lonely venture this is when you are going through a treatment. If you are half way good, you are a star performer and the theater is full of adoring fans and enthusiastic audience. There are supporting actors and actresses. They are props and stage hands. Everybody is rooting for a happy ending. By all accounts, it seems I pulled off an extraordinary performance. An element of Greek tragedy at the beginning but with an happy ending. How can you beat that? I had a perfect storyline. A cancer version of “rags to riches” -from the worst diagnosis to a remission victory featuring a courageous heroine. When the show was over, I got the standing ovation. Most of the audience gave raving reviews and went home inspired. </p>
<p>Yet, the show is not over for me. It has only started. The part that was an open performance was only Act One, and I don’t know how many more acts there are – I hope many. Now the theater is dark, and I am left alone on the stage, yet I still dance and sing because that’s what the script calls for, and the script must be adhered to no matter whether there is audience or not. Otherwise, the show will be over, and the show must go on. Paradoxically, it’s my sincerest hope that I will perform in the dark alone as long as possible. I know what it means to open curtain. I would rather that my plight does not become a public spectacle again. And, I also know that I am to perform alone in a dark empty stage night after night so that I won’t have to have a public performance. That amazing performance I just had that resulted in repeated curtain calls – I would like to avoid them. I hope I had my last curtain call. One such glory was more than sufficient for me. </p>
<p>So, tonight I dance alone again – and it is becoming a comfortable routine, but maybe I will do a bit of improvisation. A variety is the spice of life, as the clich</p>
<p>Sunrise, living in remission is different from yet so similar to living with a chronic condition. I have found some comfort in ECAP (Exceptional CAncer Patients), even tho I’ve never had cancer. They are all hoping to perform in the dark, as I do with my chronic condition and hope to continue to do rather than be in the bright ER/hospital lights with potential life-threatening infections. “Tuesdays with Morrie” ias another source I find helpful. Bernie Siegel also has “How to Live Between Office Visits” and “Prescriptions for Everyday Living,” and other titles that might be helpful.</p>
<p>Please know that there are many other performers, each doing their best to avoid having the lights and curtain go up. I hope this is somehow comforting–it helps me sometimes to know that there are others. ;)</p>
<p>sunrise, I’ve been wondering where you’ve been. I assumed you were celebrating your good news and son’s graduation. Now I see that you’ve been researching and reflecting, too. </p>
<p>I don’t blame you. It must be a shock to think you just finished a marathon, but it turned out to “only” be a 10k. Don’t despair. I’m convinced you’re meant to beat this. Your H and the boys think so, too, I bet. </p>
<p>I hope you enjoy your summer and take time to get your rest (physical and mental) before the next act starts. The fall semester will be here before you know it. And, with the extra anticipation of seeing your baby become an AROTC cadet, you’ve got so much to look forward to. Enjoy it all.</p>
<p>My cousin died very young of metastatic breast cancer. Her husband started an online support group for those living with cancer and living with hope. Maybe it will be a support for you
[MetaCancer.org</a> - Resources and Support for Metastatic Cancer Survivors and their Caregivers | MetaCancer.org](<a href=“http://metacancer.org/]MetaCancer.org”>http://metacancer.org/)</p>
<p>sunrise, I am sorry that you will not have the break you deserve from research and decision-making. I have read the entire thread, but I don’t remember whether you said anything about your tumor being typed. Has this been done, for tailored treatment?</p>
<p>My friend who was diagnosed with stage 4 of a very aggressive form of breast cancer was given a 50% chance of living a year; she’s working on her 7-year survival anniversary, as she still has a lot of living she intends to do and has defied all the odds, much like you! Keep on keeping on and smell the roses as you go!</p>
<p>Sunrise- how are things going with your mother? Is the cancer & treatment still a secret? Is mom doing okay? And are you able to keep up with the demands without issue to your own health?</p>
<p>somemom,</p>
<p>my mother still does not know. It’s best that I keep it this way.</p>
<p>I talk to her three times a week. The conversation runs the same every time. My mother complaining about the indignities of growing old, and me cheering her up.</p>
<p>Last time we talked, I just got so tired of this same routine, I ended up blurting out "mom, you know there are people whose life goal it to live long enough to complain about the indignities of growing old. I have a very good friend who wishes to live long enough to see both of her children graduate from college!</p>
<p>Sunrise, 28 years ago my grandmother was diagnosed at age 72 with ovarian cancer Stage 3c with widespread metastases. She chose the most aggressive form of then-available treatment and survived for another 12 years, with several recurrences but eventually dying from cardiac failure, relatively peacefully and with all her marbles. Cases like hers often don’t get included in the literature or in the scary statistics–she moved and was lost to follow-up by her original treatment team. There’s lot to suggest you’ll be part of this statistical silent minority. And whatever the future holds there’s even more to suggest that you are living a powerfully engaged and fulfilling life. All of us reading about your journey feel very lucky you are sharing your wisdom.</p>
<p>Two days before I was schedule to have an operation, I went to a book store to buy a few interesting pieces to read while I am recovering from a major surgery. The first thing that caught my eye was a travel book titled 1000 Places To See Before You Die. Having spent a few days gorging on one series of grim statistics after another on my survival odds, I had a gut reaction of dismay Geez, they gotta come up with a more manageable list now for people like me! As optimistic as I am, I am also a realist. So, in the end I settled with The Most Scenic Drives in America 120 Spectacular Road Trips. </p>
<p>I love traveling. If I have to pick one passion as a hobby that fires me up more than anything else, it is traveling to remote corners of the world. The less trodden, the better. Its not just the destination per se that excites me. Simply being out there on the road in an unfamiliar environment is all it takes to exhilarate me. The place does not have to be a world renowned tourist attraction. On the contrary, I enjoy driving through a back road and finding myself at a local café in a small town with no pretention of serving anybody other the locals. I am a voyeur at heart. When I am surrounded by the ordinariness of other peoples daily routines in an unfamiliar town, I feel like I am a peeping Tom peering into other peoples private room. There, I find a woman stepping out of a shower with water dripping from her freshly scrubbed bare face. This is a far more fascinating sight than any elaborately manicured tourist attractions decked out like a beauty pageant contestant with heavy makeup and fake smiles. </p>
<p>Before the age of iPad, I used to have a stash of adventure trip brochures under my pillow. Just like a dirty old man reading a dirty magazine by a dimmed bedside lamp while his wife is sound asleep, I used to read about the trips word by word, getting progressively more aroused by the pictures of the remote villages and the descriptions of the proposed daily itineraries.</p>
<p>So it is no wonder that I dragged my kids through all four corners of this world we live in. Last time I checked, they have visited close to 50 countries, many of which in developing worlds. On one such trip (Mongolia), when we finally made it back to the capital city (Ulaan Baatar), kids went straight to an Internet Café to IM their friends. A response came back Mongolia? Didnt you go to some other god forgotten places last few years also? Do your parents work for an International Aid Agency? It is my hope that I will be around long enough to torture my grandchildren the way I tortured my kids last 15 years or so.
Paradoxically, American country side is a virgin territory for me. I was so busy taking the kids to remote destinations overseas, we did not have a chance to do road trips in this country. Other than the usual suspects of business trip destinations for someone in a tech industry, the rest of USA is, indeed, the New World as far as I am concerned. Now that Jon will be off to college this fall, its time for me to explore the hidden treasures in my backyard. As such, the book about 120 road trips in USA is quite a timely acquisition, provided that I will be in a shape and, more importantly, have enough time to execute and enjoy these trips.</p>
<p>Midway through the chemo treatment, I came to realize that the odds of going into remission after a standard 18 week treatment are not in my favor given my starting point. I told myself that if I beat the odds, and indeed become a free bird, so to speak, before the summer is over, I will treat myself to one of these road trips. There were some other things I wanted to do, and one of them was to reconnect with a dear friend of mine whom I have known since middle school. She is now a faculty member at a small private college in Minnesota. The last time I saw her was eight years ago. Though we stayed in touch via email and phone calls, there is something to be said about seeing somebody. So, she and I hatched a plan. If I go in remission, I will visit her in Twin Cities and from there embark on a road trip along the Mississippi River all the way down to Iowa. These were #60 and # 67 trips in the book. </p>
<p>So, when I was declared in remission, I made good on the promise, and promptly headed out to Minnesota. An intense three day road trip ensued. Since my friend does not drive much, I drove 12 hours a day, all along the river and through the back roads connecting one small farming town to another. My friend was exhausted just sitting in the passenger seat: I guess she is not used to being driven, literally and metaphorically, by a drill sergeant. What she probably did not realize was how intent I was on covering all the places along the way that were mentioned in the book. I had a goal and a challenge, and by George, come hell or high water, I was not going to underperform and miss a single place mentioned in the book. When I realized I missed a couple of check marks, I even back tracked the next day this, my friend did not know, since I was the driver and the navigator at the same time, and a stretch of rural back roads can look fairly similar especially when we were deep in conversation about our passion, love, angst, disappointments, happiness, grievances, regrets in short, life! </p>
<p>For me, its almost a compulsion to finish the task and finish it well, without a single t missing a line and an i missing a dot. I guess this is an over expression of Type A personality galore. Oh, I do enjoy the care free nature of the road trip, but the basic minimum of what I set out to accomplish must be met first. Being disciplined and goal oriented is not antithetical to finding pleasure from unexpected and unplanned places and enjoying the moment. On the contrary, I thrive on being disciplined and determined. It enhances the satisfaction and joy I draw from spontaneous pleasure. I enjoy a sense of achievement in all things small and large when the set goals are met. And, this is the same approach I bring to managing my cancer and executing a co-existence plan with my cancer for the rest of my life hopefully a long one. I have a goal to achieve, that is, one long term remission at a time, and have a game plan to maximize the odds of achieving it. I have every intention to do what needs to be done from life style choices, nutrition, exercise, and continuous monitoring of the latest potential breakthroughs in the medical science. I also need to be vigilant for any sign of recurrence for early intervention, if necessary. </p>
<p>Upon learning about the strict anti cancer exercise and nutrition regimen I am following and a constant effort to keep up with the latest development in cancer research, some of my acquaintances and friends advised me to learn to relax, forget about cancer, and enjoy life. In short, they think I am obsessed with my cancer, made it into a central aspect of my life, and am stressing myself to death with an unsustainably strict regimen which I am bound to fail to adhere to in the long run. I have to admit cancer is a big part of my identity now. How can it not? Unless there is a miracle cure just around the corner, what I have is not curable with a near 100% recurrence rate within a couple of years. Continuous monitoring and daily adherence to a regimen that might perhaps allow me to stay in remission longer is a fact of my life a new normal for me. </p>
<p>Where I disagree is the impact of being on a high alert with no end in sight. Some people may find this a very stressful prospect - depressing even. For me, too, it is not always easy, but within the boundary of whats normal personally. When I have several errands to run, I try to come up with the most efficient route not because I necessarily have a time constraint, but because its a challenge to rise to and a piece of operations research puzzle that must have the most optimal, elegant solution for. When we play solitaire on the computer, dont we all try to achieve the best score? Not because there is a huge award associated with that accomplishment, but because we are wired to push the boundary and see the results of our personal best. </p>
<p>Thats how I feel about this whole cancer survival game. This is a game with boundary conditions set by the original game developer. So, published stats tell me that the odds of surviving 10 years is near zero for me. I would like to see how far I can push that number. Its not even a matter of a will to survive. Rather, its a matter of a personal challenge. Somebody, something gave me a very challenging problem to solve, and I want to solve it in the most parsimonious, elegant, and efficient manner. Like a mathematician who wants to solve a complex math problem with the least amount of steps. Like a bird watcher who wants to be the first among the group to spot that rare species. Like a photographer who patiently waits for hours to capture that perfect moment when the angle of the light and the shadow create a singular and ephemeral spark of absolute beauty. </p>
<p>I know I have much to live for. I am almost giddy with anticipation for what I will see and feel in ten years, twenty years, and thirty years and so on. Yet, I dont have a killer instinct for survival at all cost. I never had the fetish for living for the sake of living. I am not one of those people who elevate a mere act of survival as a heroic accomplishment. When and if living becomes burdensome not only to myself, but also to those I love, I am willing and ready to let go. I am not afraid of my own death. More than ever, I now believe that death is easy on the dying. The pain is for the living. I would like to minimize the burden of my untimely death on my family my husband and two kids. This is certainly a big incentive for me to do everything within my power to emerge a long term cancer survivor defying all the grim statistics associated with my diagnosis. </p>
<p>Yet, deep down, if this is all I have, I wont be able to sustain the anti cancer regimen I concocted and the effort to stay on a high alert for all the latest medical research development. The motivation to become a long term survivor is laudably pure, but the execution of the plan would not be possible without the desire to beat the system for the pure satisfaction of having outsmarted the original game developers intent. Just like the road trip: the trip was launched for the joy of care free pleasure, but the execution depended on the desire to cross all the Ts and dot all the Is. I have always been a planner and an optimizer. Being disciplined is a natural state for me. </p>
<p>Then, there is also a matter of curiosity. For cancer patients, waiting for the next drug or the treatment regimen is like a walking into a movie theater - with an unspecified movie to be shown. We don’t know whether it’s a dud or a master piece. But we won’t find out unless we buy the entry ticket. To me, earning a few more years at a time with whatever treatment options available is like buying this ticket. Who knows, maybe what happened to tuberculosis will happen to cancer - the most common cause of death disappearing virtually overnight with one brilliant and serendipitous discovery of a miracle cure! Well, this is unlikely. More “doable” scenario is a long and slow accumulation of medical advancements that may save some of us, but not all. If not for the strongest survival instinct, just out of curiosity, I will buy this ticket to the theater. I want to have a chance to witness what’s there behind the closed curtain.</p>
<p>Three days of road trip with my childhood friend was indeed wonderful way beyond my expectation. Both of us are at the classic middle age inflection point (age 50), and we were bound to ruminate on our lives so far. Spending long hours driving with no other distraction provided a perfect environment for us to discuss our triumphs, regrets, and hopes. And, nostalgia for the dreams that were just that, dreams, when we awoke from the slumber called carefree youth and stepped into the reality of the world around us full of compromises and thwarted ambitions. When my friend shared her regrets for aspects of her life, I asked her if you could go back in time and make a different choice, what would that be? Her answer was not any particular moment per se to choose. Rather, I wish I had been a little wiser, a bit more goal oriented, a little more disciplined all along the way I told her that what she was talking about was a few chapters of her life that could use some revisions, that the book called her life did not have a major missing chapter, or a chapter that shouldnt be there but cannot be taken out. In short, I told her, she is living the life meant to be lived by her, and by this standard, her life is a success. </p>
<p>I have a mini book, a book within a book, in my life titled cancer and me. I hope this is a long book full of tedious and unremarkable ordinary routines. I hope this is not a book with short and intense drama. Unlike the road trip I took with my friend, if I miss important landmarks, I will not be able to surreptitiously back track the next morning. Regardless of how short or long it may be, when I find myself at the end of the journey, writing a closing chapter of this book, I hope I dont find any missing chapters or chapters that shouldnt be there. Wish for an opportunity to do some revisions, yes, but no major regrets that the whole story line should have been different. This, more than anything else, is what keeps me on the strict regimen and a daily vigilance for survival. Doing anything less at the risk of wishing for a different book at the finishing line will be so much more stressful that I am better off with the happy routine of a dozen fruits and vegetable diet and 75 minute exercise plus daily perusal of cancer research development.</p>
<p>As usual, I was slow in unpacking when I was back from this trip. I pulled the Most Scenic Drives book from the backpack: two down and 118 to go. Now that I think about it, here is a business idea. What if I publish a book with a list more manageable for cancer patients with a poor prognosis? There should be a huge market for it. But then, I realize convincing people to buy this book will be about as easy as it is to convince a couple planning their wedding to buy a divorce insurance that reimburses the wedding and honeymoon expenses in the event of a divorce within a few years. Given the divorce statistics, it would be an eminently prudent thing for the couples to buy this insurance, but nobody wants to be the statistics when they are planning for a happy ending. Come to think of it, not even I, ever the rational thinker, would want to buy a stage 4 cancer patients version of this book with only five entries </p>
<p>I love your turning to American road trips! What a marvelous thing to look forward to, one trip at a time.</p>
<p>I can’t say enough about making the drive to Hana on the island of Maui if you have not already done so. This is deservedly on the list of the world’s great drives. Renting a 4WD vehicle so you can circumnavigate the island rather than retracing your steps is worth it as well. I assume your book ranks Route 1 up the California coast in the top 10?</p>
<p>It’s not technically a road trip, but the Zephyr train from Chicago to Oakland is extraordinary. My parents and I made this trip (30 years after our first run) to celebrate my father’s 70th birthday. It offers some advantages over driving for someone with a health condition: you always have a bathroom at hand, and your companion can always turn her focus to you when necessary without pausing the trip.</p>
<p>May you make all 118 left on the list. :)</p>
<p>Yet another moving and inspiring post, sunriseeast! I am looking forward to reading about all of these road trips. I second Hanna’s recommendation for the Hana trip. We did it on our honeymoon in Maui, and it is wonderful. I would also add the drive along Lake Superior on the Keewenaw peninsula in Michigan’s UP (Copper Harbor, Eagle Harbor, etc.)</p>
<p>I would recommend the Utah/AZ red rocks/Lake Powell/Bryce/Zion/Beaver/Moab/etc area for one extreme the the PNW-BC/WA for the opposite extreme. Vancouver Island is stunning and you can take a car ferry from Vancouver to the island, then a different car ferry back if you want to loop down through the Olympic Peninsula.</p>
<p>Do you get bonus driving points for ferry rides & tunnels :D</p>
<p>sunrise, I do not know if this is included in your book, but the loop drive around (well, almost a loop) Mt Rainier is spectacular. If you go, take the side road and visit a place called Sunrise - it is not to be missed.</p>
<p>I second (third?) the Hana drive. And while in HI, don’t forget the Hawaii Volcanoes National Park on the Big Island. That drive through the solidified lava fields is an awesome experience - you will feel as if you are on another planet.</p>
<p>[Hawai’i</a> Volcanoes National Park - Hawai’i Volcanoes National Park (U.S. National Park Service)](<a href=“http://www.nps.gov/havo/index.htm]Hawai’i”>Hawaiʻi Volcanoes National Park (U.S. National Park Service))</p>
<p>I think that US road trips deserves its own thread…</p>
<p>Best of luck to you, OP, and your performance on a dark stage. For fabulous sites to see, here are some of my favorites: the coast of Maine (take a boat ride along Boothbay Harbor, see Acadia National Park), Yosemite, the Grand Canyon, San Francisco Bay. I have always wanted to go to the Bay of Fundy, but have not gotten there yet. Look at some internet photos if you have not been. You can add this on to a trip to Maine. Cruise boats leave from Portland.</p>
<p>Oh yes, NYMom, I want to go on a road trip in the South, through Alabama and Mississippi and South Carolina and Tennessee…</p>