my diagnosis of advanced cancer: how to help my kids

<p>well, content wise, friend on this thread have seen them scattered here and there in several of my latest posts. The following is a more formalized essay I used to update my offline friends that combine the key elements of my latest posts on CC.</p>

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<p>The Absinthe Drinker and David</p>

<p>Musee d’Orsay in Paris is one of my three favorite museums in the world - the other two being Metropolitan Museum of Art in Manhattan, and Rijksmuseum in Amsterdam. I remember our family vacation some years back – a whirlwind two week affair from France to Netherland with Belgium in between. In Paris we made an obligatory pilgrimage to her world famous museums. When you are exposed to so many masterpieces in a short period of time, the art overwhelms you. You don’t really remember individual pieces and everything becomes a blur after a day or two. Yet, one piece of painting stood out. I have seen this painting in countless art books, and I even saw it in my previous visit to Musee d’Orsay. Yet, somehow that day, it called out to me and drew me in. </p>

<p>It was Degas’ Absinthe Drinker. I stood there, transfixed. It shows a woman staring downward at a glass of Absinthe. Absinthe was allegedly a very popular drink – a powerfully addictive concoction favored by artists and other not so desirable non-conformists of the time. I have never seen a painting or a photograph that captured the sense of quiet resignation and a wordless despair quite like this. Not the divine sorrow that elevates both the original subject and the viewers eons later that Michelangelo’s Pieta evokes. Not the wordless wail of pain and horror in Much’s paintings. But deeply set melancholy that one can’t scrub away. Some might say that the Absinthe drinker’s despair is repulsive in its willful failure to extract even an ounce of pity from us by refusing to distill the sadness into something more noble or worthy of our sympathy - something that transcends the vulgarity of the situation depicted: a woman of ill refute about to embark on yet another binge cycle, not out of excitement and anticipation, but out of a lack of choice to do otherwise. I was drawn to this woman who made me feel like a cripple. There was this whole swath or emotional landscape that I have never experienced in my life. I felt incomplete – emotionally. I wail. I holler. I scream. I don’t sit in a quiet despair. She was giving me a glimpse of a foreign landscape. I was morbidly fascinated with and alternately repulsed by her. </p>

<p>Little did I know years back then that one day I would actually know in my heart what that woman must have felt had she been a real person. Last week, sitting in the waiting room at the Memorial Sloan Kettering Cancer Center, I felt like that Absinthe drinker. How apt is it that I was actually about to “drink”, through an IV, a toxic cocktail that my body cannot live without? How is it different from the addictive narcotic the woman in the painting feels she has no choice but to imbibe? I am usually the most upbeat patient in the whole center. I come in with a bounce in my gait and dispense cheery greetings to the staff peppered with a good natured tease. But that day, I sat there with a foreboding sense of impending doom and an ever increasing sense of futility of it all, waiting for my turn to be called into the pen where I would get hooked to the IV bag full of poison. For all I know, I was getting the chemo infusion that may not even be working anymore.</p>

<p>Lately, my cancer blood tests results have not been good. Though a scan taken mid way two months ago was clean, the cancer antigen number has been slowly, but consistently rising and it seems to accelerate now. Though there is a chance the number is going up for reasons unrelated to cancer, the more likely scenario is, the drug that worked at the beginning stopped working now, and cancer is coming back again. I have seen this movie before many times, watching other women go through this, and so far, a happy ending is rare. We will have to get a scan to see what’s going on, and devise a plan for the next step. Given that my cancer meter has been really quiet, I am hoping if anything is showing on the scan, it’s just a really early stage. If it’s wide spread, I can no longer rely on my cancer meter to get an early warning on what is happening. That would be an alarming development. </p>

<p>So, there, I sat like the Absinthe drinker, already dreading the results of the scan that has not been even taken yet. No matter how prepared I think I am for bad results, a part of me is already asking - how many times should I buoy myself only to fall hard? How many times should I pick myself up off the floor to charge forward only to hit the wall instead? The other day, a friend of me said she admired me for my courage and determination. I felt like she was describing someone else that I did not even recognize, because that was not how I felt. I felt like the Absinthe drinker. While she might be worthy of pity, she certainly did not look like a hero to me.</p>

<p>My self introspection and a nascent journey to “complete” my emotional repertoire did not last long as I had to put a final touch on Amir’s surprise birthday party that was to take place in a few days. I planned this six months ago, just before my recurrence was confirmed. It was meant to be a complete shock to him, since this is about the last thing he would ever suspect me of doing. I have always sneered at the oh-so conventional American middle class bourgeoisie ritual of a surprise birthday party. How sophomoric, I used to say. I even have it in writing that if he ever pulls off anything like that on me, it will be a ground for divorce. Hence, the foundation for a successful surprise party was there. I needed to execute well though to make it a real success. I meticulously created a guest list consisting of all the shady characters plucked out of the far flung alternate universe called his ignominious past with the help of various people who got to know him at different points of their shared past. Amir’s sister and her husband flew in from Israel. Friends from his graduate school days flew in and drove from Illinois. Friends from near and far came. All of them completely cooperated and did a magnificent job keeping this a secret for 6 months. </p>

<p>This was not an easy stunt for me. First of all, I don’t do events. In fact, I am allergic to ceremonies and such. I couldn’t even stomach the idea of my own wedding event so we got married in a court house. My two kids have a standing offer of an elopement bonus from me. The worse problem is the fact that we are the type of couple who share everything and anything. We tell each other when we sneeze, barf, cough, and perform a few other bodily functions that will remain unelaborated on. For me to keep this kind of a monumental secret from him was not an easy feat. I even had to orchestrate a decoy birthday event with only a very small group of friends, so that he wouldn’t sulk in the corner. And of course, there was this pesky little problem called party finance. Daniel had to put a deposit on his credit card since mine are all joint accounts with Amir. Then a few days before the party, I had to write a cashier’s check worth quite a tidy sum without generating automatic fund transfer alert that goes out to him. None of my Wharton MBA courses dealt with personal money laundering. Yet another proof that they don’t teach you anything really useful and practical in school. All in all, it would have been much easier if I had a division of gigolos on my payroll the whole time.</p>

<p>It was so worth everything though. I will never forget the look on his face when he walked into the banquet hall: he thought we were attending a wine tasting event held at a local hotel. The party was a magnificent success. Food was superb, the setting elegant, and the staff courteous and efficient. More than anything else, it was the guests that really bespoke the kind of person Amir is and made it such a meaning and moving occasion for him. People genuinely loved and appreciated Amir and it showed. I could feel the warmth the guests felt even just among themselves. There was such good cheer all around. I asked the guests to come up and share quintessential Amir Mane stories. I shared mine, and several guests did too. The most touching was what our two kids shared. One of them concluded his remarks by saying “you all are very fortunate to have him as a friend. As for me, having him as a father was like winning a lottery.” Amir is one lucky dude. People were saying things about him they would normally say when the object of their exaggerated and revisionist platitude is lying in a casket at his funeral.</p>

<p>In the end, the joke was on me, because I was very pleasantly surprised: the party was much more a success than I ever imagined or planned it to be. All I wanted was to pleasantly surprise him, and see him amused. Last 16 months were not easy on him either: I believe it’s much worse to watch a loved one go through what I had to go through, than do it oneself. I just wanted to give something back to him. I must also admit, I wanted to create an occasion for my kids to see their dad through my eyes – there might not be enough time for me to tell them in so many words. Another motivation for the party was, if I don’t emerge as a lucky survivor, I want my family to remember the time of my struggle as a happy time in our life together - the spring time when all the beautiful things blossomed, not the emotionally barren landscape of bitter cold winter. The evening like this is what I want to leave behind… This is what I want them to carry forward with them. In short, my ambition was relatively contained and modest. Yet, what I saw was beyond anything I expected to get out of this event. I have never seen Amir so happy. He said, “This was the happiest moment in his life, and it was a transformative experience. I never want another party for me, because nothing is going to be better than this!” Guests did not want to leave even when it was well past the allotted time in the banquet hall. I was reminded of the Danish movie Babette’s Feast. If I were to capture one perfect moment in life, that evening of the party would be it. </p>

<p>I have been willfully deluding myself into thinking that the cancer, as a whole, is a net positive event, a gift. I wanted to believe this so that I can create a convincing façade of hope and optimism to what could be an unmitigated catastrophe. That evening, I felt that maybe I was not deluding myself after all. Without my cancer, it would not have occurred to me to throw this party for him. Without cancer, I would not have had such a keen sense of appreciation for the love we shared. Without cancer, I would not have made such a deep connection with some of our mutual friends in that banquet hall. Cancer made my outer shell porous. Though I am still obstinate and stubborn, I am more open to letting people in and reaching out farther. That evening, it almost felt like a tendril of billowing smoke that used to dull the colors and obscured the shapes of all that surrounded me was clearing away. A haze that hid the distant beauty on the horizon was lifting, and I could see far away…… I could almost discern each individual wave length that made up the vibrant colors I saw. I could almost hear individual note of all the sounds I was hearing – the laugher, the song, the whisper, and the cheery melody of wine glasses clinking….</p>

<p>But this gift comes wrapped in a thorny ribbon. There is an abysmal darkness to this gift. And, yet, this darkness is a shadow paired off with light. I remember another glorious museum trip in Florence – to the venerable Uffizi. No matter how many times you saw the photograph or a replica of Michelangelo’s David, you are never prepared for the visceral, emotional impact of being there in David’s presence. All other objects and creatures diminish in scale. He alone is alive. I remember that visit so long ago. I remember the interplay of light and shadow that together gave David his presence. I remember the shadow that defined his gorgeous contour. It imbued him with a soundless voice that speaks to the viewers across the chasm of time and space. Imagine - no shadow, no David. I know now the darkness as part of the harmony of light and shadow can be a beautiful thing as it gives shape to beauty that would remain shapeless otherwise. I understand now the Absinthe drinker is David’s shadow. I must remember to embrace both of them, for one does not exist in its full glory without the other. </p>

<p>I feel blessed that so far, my cancer did not extinguish the life force of this family. It did not become the darkness that snuffed out any trace of light in the room. Rather, it became that shadow that gives the elegant nuance to the contour of the beautiful sculpture we managed to chisel out of a block of marble during last 27 years of our life together – my little David. My primary goal is not necessarily a long term survival (though I will do my best to achieve it), but to leave the legacy that fits the essence of who I am. A little miniature David with a perfect harmony of light and shadow. This is the legacy I want to leave behind. So far, I am succeeding.</p>

<p>I hope to take my kids this summer to Florence. To introduce them to my David. To show them the light and shadow of Tuscan sunset. I will not leave the Absinthe drinker home. She is part of me. She gives David his glorious contour.</p>

<p>Incredibly eloquent, thank you for sharing it with us, Sunrise.</p>

<p>^Ditto.</p>

<p>I am incredibly proud to “know” you.</p>

<p>Beautiful passage, sunrise. I am so happy your party was a huge success. I think of you and your journey often. I appreciate your willingness to share your story and the eloquence in which you do it.</p>

<p>Sunriseeast: As others have said, you are such an inspiration! I look forward to reading your posts; you have such a way with words! I have gone back and read this entire thread and it has certainly helped me put things into perspective. So often we get so focused and obsessed on the small things failing to appreciate the many blessings that we have. You and your family are in my thoughts and prayers.</p>

<p>for those of you who want to see the Absinthe drinker painting: </p>

<p>[The</a> Absinthe Drinker - Edgar Degas Painting](<a href=“Famous-painters.org”>Famous-painters.org)</p>

<p>thanks for sharing your story Sunrise. And thanks for the link to the Degas painting - really haunting. </p>

<p>Wishing you continued strength on your journey. We are all on this journey, one way or the other; your attitude is inspiring.</p>

<p>I have also always liked to look at The Absinthe Drinker and to feel Degas’ keen eye and discerning heart.<br>
You write so beautifully. Your friends must treasure you very much. Here is to the beauty of Tuscany with your sons and husband this summer–go for it! Keep writing. As san-de says, we are all on the same journey and time is often squandered and unappreciated.</p>

<p>I don’t think I’ll ever look at The Absinthe Drinker in the same way, and I thank you for that.</p>

<p>The latest blood test clearly shows that the current treatment is not going to put me in remission and if unchanged will result in actual measurable tumors on the scan. The number has gone up very meaningfully, and there is no doubt by now.</p>

<p>I am still grateful that my cancer’s MO has changed. This means that the current treatment is somewhat working. My doctor, and my own research indicate that one of the two drugs is still helping while the other one petered out. I think this is the reason why the scan is still coming out clean. Meaning, cancer cells are all around, but they haven’t consolidated into a tumor form. If both drugs stopped working, I would have already have several tumors showing. Cancer moves from zero to hundred miles on a nano second for me unless there is something that is holding it back. </p>

<p>So, we will keep the one that seems to still working, and replace the other with a new drug. I chose a gentle drug this time. It’s an oral pills. I read good reports of women taking these pills for years and keeping cancer at a bay: not cured, but maintaining a “truce”. But then again, it may stop working (as they frequently do also) and I may see tumors some months down the road. So, now, I will go to MSKCC every other week or every three week for infusion of one of the drugs, and the rest of the time I pop pills into my mouth. </p>

<p>I have chosen a gentler path for now because I want to preserve really powerful heavy artillery for when/if I see actual tumors on the scan. There are only so many times you can use this heavy stuff before you develop resistance, so I wouldn’t want to waste it when there is no tumor to work on. </p>

<p>There are always stories of women who have been on constant chemo for years and finally reach a remission that lasts a long time. However, realistically, odds are not very high that will happen for me. As for me, my number one asset is my otherwise perfect health that has allowed and will continue to allow me to handle all kinds of assaults called chemo poison. Women with my diagnosis exit the stage when their body can’t take it any longer or when they run out of drugs that work for them. I already have ONE winning asset. I hope they keep coming up with something that works. </p>

<p>Yes, I am bummed out, because when I started this treatment four months ago, and when the scan came back clean two month ago, I thought I would be done by now. Instead, I am starting all over again, and we don’t even have an end plan, because we know nothing about my trajectory. However, I am not so down as you might expect. It’s because I saw this coming for close to two months now. I already had a hunch in January when the blood test number showed initial tiny uptake. Though many people told me that this may be due to unrelated reasons, I already had a hunch. I am so sick and tired of being right all the time about my cancer coming back since I notice it even before any test last time it came back. And, this time also, I already knew. Can somebody please prove me wrong? Oh, but then again, I was also 100% right when the treatment was working –and I proved my wrong when he thought it did not. I guess it goes both ways…. I also feel pretty secure in my knowledge that when tumors form, my cancer meter will tell me, so I will never be caught off guard and unprepared and unknowingly let cancer spread all over.</p>

<p>My near term hope is, for this new regimen to hold off the progress for next several month at the least before I go into an intense treatment again: I have a lot of plans for the summer, and I would like to do them all.</p>

<p>I am not so down- so don’t worry about me. It usually takes a couple of days for me to metabolize my angst, and I am past that phase. I remain hopeful, and grateful that I have so much going for me in spite of everything.</p>

<p>Awww, shoot! This news bums me out, too. I’m going to join in putting my hope in the new regimen. I want you to do everything you have planned for this summer. In the meantime, we’re here for you.</p>

<p>I’m so sorry to hear that the numbers continued going up and that the interpretation that the doctors provided has put you back in a place that seems uncertain. As you say, the fact that the current treatment is clearly working in part, if not 100%, will hopefully pave way for a great response to the new regimen. I have no doubt that you are in the very best of hands, and that your doctors are strategizing a treatment plan that will give you the best possible chance to achieve all that you are hoping for and more. Wishing you all the best.</p>

<p>I think you have made a wise decision, sunrise, to pursue a “gentler” option at this time. I’m wondering how you and the doctors know which drug is working and which is not? Just curious.</p>

<p>We are all hoping for long-term success of the new combined treatment!</p>

<p>Wishing you the best for your summer plans and your new regimen.</p>

<p>Nymom,</p>

<p>Both my doctor and I came to the same conclusion on which drug must be still salvageable, and which one pooped out. He based on the clinical observations of many patients at Memorial Sloan Kettering. Me through internet search. One drug tends to have many patients for whom it no longer worked after several months, while the other has a history of working much longer.</p>

<p>Another point: one drug (the one we are jettisoning) works directly on the cancer cells to kill them. as such if cancer cells goes through mutation, the drug may not work effectively. The other one we are keeping works by pruning blood supplies for the cancer cells - it’s less susceptible to the effect of cancer cells going through mutation. </p>

<p>This is the basis of the decision. That said, what I learned is, cancer treatment for patients like me is a good portion art, not straightforward science. There is so much unknown.</p>

<p>It appears you are doing a great deal to add to the knowledge pool. I am glad you have a team of doctors who work well with you and agree with your conclusions. Good luck on the new regime!</p>

<p>Thanks for satisfying my curiousity, sunrise. That does make sense.</p>

<p>sunrise, I’m sorry to hear about the latest developments. The saying that medicine is art is especially true when it comes to oncology. Your doctor’s strategy makes perfect sense ([Utility</a> of Vascular Endothelial Growth Factor Inhibitors in the Treatment of Ovarian Cancer: From Concept to Application](<a href=“http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3180777/]Utility”>Utility of Vascular Endothelial Growth Factor Inhibitors in the Treatment of Ovarian Cancer: From Concept to Application - PMC)). All the best to you.</p>

<p>OK. So, yesterday was the starting point of my latest saga.</p>

<p>Now, I go to MSKCC once every three weeks for an infusion of one drug, then I pop a pill every day. It’s a chemotherapy in a pill. What a nifty invention. I wish all chemotherapy was like that: a pill form. However, most chemo drugs can only be taken through IV, and this and a couple of other drugs are rare exceptions.</p>

<p>This is supposed to be a very gentle drug: not that it matters to me much immediately since I have been virtually side effect free even when I had a very powerful concoction every week. Still, it’s good to treat my body gently given how long I have been at it without a break. This may not put me in remission: though it may because I am starting this regimen without any tumor burden and all it needs to do is to keep the number down on a sustainable basis, and thus preventing floating cancer cells from settling into tumors. I have so many plans for this summer, so I hope this pill will let me do all that.</p>

<p>Even if it does not go all the way (remission), if it buys me another 6 months or so before I need to deploy heavy artillery, it’s a victory. These days, I feel like a promiscuous village tramp: fleeting from one chemo drug to another. Oh, well… At least I have stayed with one man last 27 years.</p>

<p>I am in good spirit and in good energy. It usually takes a couple of day for me to metabolize the latest set back, and I bounce back. During this period, I am zealously possessive of my misery and don’t want to share it with people with the exception of my H. Even so, he had to fight tooth and nail to be admitted to the orchestra seat of this gloomy and macabre performance. He now has a season subscription ticket. But, I reserve the right to cancel his subscription any time. However, I have the feeling that he may try to report it to better business bureau for a breach of contract.</p>

<p>I am a cat with nine lives. If I die eight times, I win, and I haven’t died yet :)</p>

<p>Your husband is a wise man…he knows he has a keeper.
And it’s apparent that you have a keeper too.
I can visualize your pill breaking down and floating off in your bloodstream to do its work…</p>