<p>Marian is a wise woman – I was told something similar ten years ago when I was first diagnosed.
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<p>I will PM you, but PLEASE take the side effects seriously. They can indeed be worse than the treatment.</p>
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<p>We are all going to die. It’s just a matter of when. Some of us will live to a ripe old age; some of us will pass unexpectedly from unforeseen causes much earlier than we hoped. Some of us will have the misfortune to continue to live and breathe many years beyond the point where our bodies or minds allow us to do much of anything, confined to our beds or living out our days in nursing homes unable to recognize our occasional visitors. Others of us will live out our lives, long or short, in relatively good physical health, even if we ultimately are struck down by a sudden or chronic illness. </p>
<p>As humans are probably the only creatures blessed with the ability to be aware of our own mortality, in a sense we all operate under the “delusion” of immortality – without that, it could be hard to find motivation to do much of anything. </p>
<p>The point is, all that any of us can do is live the life that we have now. If we perceive our remaining time to be short, then certainly that is a reason to reset priorities. But then again, the wisest among us will never take anything for granted.</p>
<p>I am so sorry!!! (((hugs)))</p>
<p>You have made so many good choices. Such a full, vibrant life. Never regret any of your decisions. Good luck with your mother- the good news is that this is just a visit, you can leave her behind. She may even surprise you when you drop your bombshell. If we were allotted only so many quality experiences in life you have already taken most other people’s shares! And the negatives never subtract from the positives- this isn’t a balance sheet. Thank you so much for sharing your thoughts with us. When things get tough on your Asian visit remember why you left, and get to do so again.</p>
<p>just sending positive vibes…</p>
<p>Thinking of you, sunriseeast.</p>
<p>have a wonderful trip to Asia. thinking of you!</p>
<p>sunrise you really made me laugh reporting on your old colleague’s remarkably narcissistic commentary. I, too, have a friend who is a blurter that I still love and tolerate well. She also never can distinguish when she hears a confidence vs a report for the public domain. Her character otherwise is so charming that everyone overlooks her peculiar deaf ear. I hope you will keep posting whenever. I am so sorry you have to do the big chemo round again which can be punishing for your body. I will pray for your sought after post-chemo remission so your body can gain some rest and repose. You have an adventurous spirit and have ways of turning things over to examine in your mind that is very good reading here as we readers keenly feel our mutual mortality as we read your thoughts. And we all share with you this time in life with sons just getting launched into their own adulthood–in your case by thoughtful, lively and loving parents who laid sound foundations for them. keep shining and posting</p>
<p>thanks for such kind words from everyone! I already have gone through two weekly treatment s of the new regimen. This treatment is a bit more arduous. Every week, and it takes door to door round trip from NJ to NYC including the treatment time 8-9 hours. Makes a long day. But I am still holding up remarkably well. Still walking at least one way from the Penn Station to MSKCC (2 miles) with a backpack containing a laptop, food, and water. </p>
<p>My bowel problems are on going. By now, we all know that it’s caused by a film of cancer over the bowel walls, so if/when this treatment has done it work, it should easy. It may be my imagination, but I feel already better. The problem is, with this bowel problem, my healthy eating habit went down the toilet. In face, I haven’t had a decent, regular meal in three weeks. So, my immediate goal next few weeks is to be able to eat healthy again!</p>
<p>But, otherwise, I am in good spirit. Objectively speaking I should be down with all these failed treatment and non-stop chemo with no end in sight, but I manage to stay in a remarkably good spirit. </p>
<p>love to you all.</p>
<p>Good to hear from you.</p>
<p>I don’t know if I could walk two miles carrying a backpack. Hope the heat isn’t too bad for you. I hear it has been bad in NYC.</p>
<p>Best to you, sunrise. Sorry the treatment is arduous, though I am most impressed by your walking with a backpack for that distance.</p>
<p>though I am still in good shape: I am NOT like my former self. A few years back, I hiked around the Everest base camp. NO WAY! I feel mortified that I now prefer escalators in public building over stairs. </p>
<p>I hope I get my former easy jaunt back. I really would like to stay chemo free, cancer free, even if it’s only for a few months at a time. I can hope, right?</p>
<p>In a way, I feel like a gambling addict. You keep losing, but you are convinced that the next round will be a block buster win. Hope springs eternal!</p>
<p>Glad to see you are keeping your amazing spirits up! </p>
<p>Be careful in the heat! I did that walk last (from LIRR to MSKCC, to visit a friend, and its tiring in nice weather. PLEASE take a cab if you are having to go in during this heat wave - its just too hot. Conserve your strength.</p>
<p>sunriseeast: I developed really severe asthma at 17 and have never been able to live the active life you have. I’m pretty sure you’re still more fit than I am. And yet, there have been many joys and rewards. I would have loved a more active life, but I have adjusted.</p>
<p>I am impressed with your two mile walk, but some Cancer free folk would never attempt it. Be gentle with yourself.</p>
<p>Only learn to seize good fortune, for good fortune is always here.
-Johann Wolfgang von Goethe </p>
<p>This is your forte, sunriseeast: To seize the good fortune.</p>
<p>loving thoughts to you, too, sunriseeast. Hoping the bowel film will respond to the chemo treatments so that you don’t have to deal with this problem which has been undermining of your well-being and good diet. wishing you pleasures to light upon in between all the arduous things you are facing…</p>
<p>Sending you extra hope and positive thoughts</p>
<p>Sending a smile and 1000% wishes that this treatment will knock the cancer back. I don’t think it’s your imagination…you know your body.</p>
<p>I am not my former self. I take pills to help prevent cancer recurrence. I am happy I have them but I am not like I was five years ago when I started them. I love my life though. I have 13 days of these pills left. We can do it. As best we can. We can do it.</p>
<p>You have gotten the gist of the following entry already on this thread, but it’s a formalized version I shared with my off line friends and family as an update.</p>
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<p>Gamblers Anonymous? Its Show Time Again!</p>
<p>One thing I learned over last year and half with very advanced cancer diagnosis and near nonstop treatment is the stark realization that if I am to be a long tern survivor, it wont be because I am cured of cancer or because I managed to achieve a holy grail among patients with deadliest kinds of cancer near permanent remission. When I recurred over nine months ago, I was still hopeful that the second time is the charm: I will achieve remission with one additional round of treatment and stay there for a very long while. That did not happen. Now, it is increasingly likely that my long term survival would be a result of successful management of cancer as a chronic disease periods of treatment punctuated by blissful remission, or more likely, a constant treatment with a good quality of life if I am lucky </p>
<p>During last nine months, four successive regimens failed to put me in remission, though, I must point out that these treatments were not unequivocal failures either. My cancer is ferociously aggressive. At the time of recurrence, it took less than three weeks to move from complete remission to several tumors on the scan. For most women with a similar diagnosis, this process usually takes several months. Yet, lately, my cancer has demonstrated a remarkable restraint. The second regimen deployed for recurrence managed to wipe out the tumors, but alas, it quit working as soon as it wiped out the tumors and cancer started to immediately progress. Yet, its progression is uncharacteristically slow. After six month of rising blood cancer antigen markers, it has only now started to manifest itself as thickening bowel walls a serosal accumulation of cancer cells outside the bowel walls. I find this highly encouraging in that while the treatments may not have reversed the course, they worked well enough to significantly slow down the progression. </p>
<p>When the cancer blood marker started to rise again, I purposefully chose a mild regimen, and when that failed, an off label experimental drug to slow down the growth. I did not expect them to actually put me in remission soon enough. My goal was to see if they manage to reverse the trend given enough time or, failing that, prolong the period before I need to bring out the big guns the chemo that is powerful enough to give me a fighting chance for second remission but at a cost of potentially long lasting side effects. I need to manage my condition strategically this means knowing when to use a stop gap measure and when to deploy a harsh regimen so that in between rough treatments the body has an opportunity to rest a bit on a mild treatment.</p>
<p>I was hoping I could postpone the onset of a harsh treatment till this fall. I have lots of plans this summer including a trip to Korea with Daniel. This is not to be. My cancer has a mind of its own. Though the scan still does not show easily identifiable tumors, I have become symptomatic. The accumulation of the cancer cells over the bowel walls is causing intermittent partial bowel obstructions and ongoing discomfort which at time is rather severe. Not only they can cause acute pain and severe bloating, they prevent me from eating properly and healthy. I was almost hospitalized but escaped the jail term since the obstruction cleared on its own while I was going through the admission process. If it becomes bad enough, I will need a surgery, but I am hoping it will not reach that point. </p>
<p>Hilariously enough, this also gave voice to my bowels literally. I now have singing bowels. Loud gurgling noises that can be heard across the room every time I put something down my throats. One of the doctors at Memorial Sloan Kettering Cancer Center (MSKCC) explained to me that this may be due to the fact that food and liquid are trying to negotiate a passage through a narrow pass created by a partial bowel obstruction. I have always said I wanted to be an opera singer in my next life time. My bowels beat me to it. So, these days, I never feel alone I am accompanied by a full orchestra. I am certainly not fit to be part of any polite society. Perhaps a temp position in a freak show Are you grossed out yet?</p>
<p>Humor aside, I realized that I can no longer postpone the obvious its time to bring out the big guns. Last week, I started on a new regimen. I am now on a weekly schedule, and the door to door round trip including the treatment time is 8-9 hours. It makes a very long day. So far, I have managed to avoid side effects from all the chemo treatments I have been subjected to. I expect (hope) that I will remain so. I can still make a two hour each way journey to MSKCC on my own frequently walking from the Penn Station to MSKCC a two mile walk - with a backpack, though I must admit my level of energy for high impact exercise did diminish after 1.5 year of near non-stop treatment. After year and half of pouring various kinds of toxic materials into my vein, I am mortified to admit that I now prefer an escalator over a stair case in subway stations. But, still, I bet I do better than 95% of the people without my health problem. </p>
<p>I suspect that I may lose hair again. This, I find, is a highly distressing prospect. Its not just a matter of vanity. Its a constant reminder of what it is I am dealing with. My cap or a wig is a portable quarantine cell I carry with myself no matter where I go a fence of a sort that separates me from the yet to be afflicted. Going beyond the abstract, being bald will be a major problem when I go to Korea. Korea is a country of suffocating conformity. I hate my wig, and spent the whole time when I was bald last year with a cap even in the middle of the summer. There is no way I can get away with wearing a cap in the summer indoors without having it become a constant subject of discussion which I need to avoid for my mental health. I have never told my mother in Korea what I have been dealing with all this time. I intend to tell her about it shortly. During last thirty some years, she has been my dependent for all practical purposes when it comes to an emotional and psychological realm. The original dynamics of parent- child relationship has reversed itself shortly after I entered college. She has never been good at dealing with bad news. I dont know how she is going to handle it (not so good, I suspect). Having my wig silently confronting her every single moment she is with me is not going to go well. </p>
<p>When I realized a couple of weeks ago that the latest setback marks the fourth regimen that failed, I sat down and thought about what now? By now, I have a bona fide authorization to feel depressed and down by anybody’s standard objectively speaking, I know where this latest data is going be compiled on a statistical balance sheet. I started with a very advanced diagnosis. It got worse when they had to leave a good lime sized tumor behind when they operated on me. The odds plunged again when I recurred so soon after I reached initial remission. Now, nine months into the treatment for recurrence, there is no end in sight yet and I am going through treatment options like Donald Trump does with perpetually twenty something wives.<br>
However, I could also think about all that I was given - the uncommon privileges I was showered with. A good career that let me reach a fairly meaningful position without compromising my values and mortgaging my integrity. Two great kids who are thriving in spite of all this. A most loving husband. Great friends. Many people don’t get these in their life time even if they live to be 100. So, I chose to feel blessed - and it was not a heroic act achieved with a grim determination. Easy enough when I put all the “negatives” and “positives” in separate columns. There is such preponderance on the “positives” column. I am gearing up for the next round of this saga. I hope I do well. Losing four rounds in a row: this has never happened in my life. In fact, I havent failed much in anything I set my heart on, and I dont think I ever failed in anything twice in a row! A humbling experience, I must say. You may think it would teach me humility. Instead, I get feisty and rebellious. I have an unlimited reserve of self delusion, and feel that in the end I will emerge in one piece. I don’t know how to explain this phenomenon: all objective data paints my case rather bleakly. Yet, I “know” in my heart I will be fine. The rationale me is puzzled by this level of delusion.</p>
<p>I think I know what it is. It’s a survival instinct. Not the demonstrative kind that shouts to everybody that “I will beat this beast and I will live!” with fire and smoke coming out of the nostril, mouth, and ears - the popular image of a ferocious chest thumping hero. Mine is more a result oriented, practical variety. It does not waste its precious resources and limited energy on ostentatious plumage and a shock and awe display of resolve. Rather, it produces what I need most: optimism and a sense of self efficacy that prevent creeping fatalism that all this is futile from paralyzing me. After all, if I am not optimistic that whatever I am doing, whatever next course of treatment I will embark on is going to work, what point is there to sustain what appears on the outside as a losing battle? This is what my survival instinct is all about: to keep me psychologically and emotionally afloat - so that I keep researching all options, so that I stay as a highly engaged self advocate in dealings with all the professional staff around, so that I keep my “environment” intact and not damaged through my struggle, and most importantly, so that I never feel anger about my whole situation. I certainly did not spent a moment wondering why me. Stuff happens in life, in nature. When a tornado hits you, you don’t waste your energy being angry at it, you reserve all your energy to “deal” with it. I still don’t see my cancer as an enemy that I should beat to submission. I see it as a red haired little girl with a fiery temper. I will be the adult. I will be the one with a calm sense of balance. </p>
<p>I am also secure in my knowledge that regardless of how this movie ends, I have already won. When I was first diagnosed, I wanted two things: first a sense of dignity in the way I conduct myself, then survival. I did not see how a mere survival as a bitter, beaten down victim could be any better than not surviving. As I look back last year and half, I have no major regrets in the way I conducted myself. I now am confident that no matter what happens, my dignity is mine to keep and nothing can take it away from me. Cancer has not diminished me. Cancer has not determined me. I grew taller and bigger. I determine cancer. This may explain why in the midst of all this, I am oddly content, and dare I say? Happy!</p>
<p>I have an irrational believe that this new treatment may just work. Irrational in that statistical odds are not in my favor by any stretch of imagination. Part of the cynical me is saying I am behaving like a gambling addict. You keep losing, yet you think the next round is going to be block buster win. Should I cure myself of this addition? Time to enroll in Gamblers Anonymous? No. This is one addiction I intend to keep. Whatever it is, bring it on. I am ready to roll the dice again. Its show time!</p>