<p>Wonderful news, sunriseeast!! What a fabulous way to start the weekend!!! I hope you’re doing a happy dance around the house!!!</p>
<p>In our circles we call it dancing with NED, no evidence of disease. He is a wonderful partner and we like to pass him around for all to share!!! Dance away!!!</p>
<p>hahaaa, yipeee! joyous news!!!</p>
<p>sunrise,</p>
<p>I have been staying away from the bad news, but I am really happy that you are FREE and CLEAN… great news and hope it last for a long long time.</p>
<p>My dad was told the same as you did at first, however, he lasted 7 years and lived a full life…</p>
<p>Sunrise, I have read and followed your blog, but never written. Congratulations! What wonderful, awesome news.</p>
<p>A Choreographer and a Dancer</p>
<p>I got the scan results today. All clean. All the tumors and accumulation of cancer cells around colons like thick films disappeared. Some enlargement of couple of thoracic nodes, but they are way below the size that warrants clinical interests, and besides they have been like that for months. Dr. S. believes that this is unrelated to cancer, and the radiologist only noted them so that it’s on record to see if later scans show any difference going forward. It looks like I am likely to go into remission. In fact, technically I am already in remission (a clean scan with a cancer antigen blood marker within a normal range). When and if I finally end this treatment successfully, I will have beaten 10 to 1 odds for complete remission following recurrence after such a short remission from the front line therapy.</p>
<p>I am relieved. I felt all along that the treatment was working based on my cancer-o-meter, and I knew I wouldn’t be surprised at all if the scan comes back clean. Still, it’s good to get this confirmation. That said, last couple of weeks, I spent an inordinate amount of time researching treatment options in case the scans show the disease progressed while on this treatment. Patients with my diagnosis succumb for two reasons - their body can no longer tolerate chemo or they no longer have chemo drugs that work for them, because a majority of patients eventually develop resistance to one chemo drug after another. If this new treatment did not work, this means, I am starting to exhaust usable options fairly early in the game after all, I have been at it for only 14 months, and I was booted off of a clinical trial for recurrence because they believed that the treatment failed (though I more or less proved otherwise later a moot point since trials have very strict rules and they do not take back the patients they booted off). Facing a foe charging forward with a full force and realizing that there are no more arrows in the quiver this is the scenario I fear most. The name of the game is how to deploy a finite set of assets for maximum bang for the bucks as long as possible long enough until new shipment arrives in the form of new breakthrough treatment options. </p>
<p>There is a sliver of hope here even for those who used up all of their arrows. Based on my research, it looks like there is a way to retrieve some of these arrows and used them again. I also realized that most oncologists are not very well versed in this black magic. This is a result of a perceptual block and a linear thinking on the part of the medical community, especially in USA where there has been a comparative dearth of access to different ways of practicing medicine. I am not talking about wildly exotic alternative medicine quacks and charlatans are hawking to desperate patients. I am talking about an out of the box thinking that is a bit different from the mainstream practice. I love Dr. S. at Memorial Sloan Kettering Cancer Center (MSKCC), and I have a huge respect for his professional expertise. However, I dont think he is infallible. Nobody is - as a premeditated lapsed Catholic (at the age of 7), I never accepted infallibility of Pope. I dare say I have been very good at what I do in my primary vocation but I have also been wrong many times. So, why should Dr. S. be an exception? After all, it takes one naked emperor to spot another. Nobody is free of their own blind spots, and it takes a pair of outsiders eye to spot it. I intend to be that outsider for him. . </p>
<p>So, I went to the consultation with Dr. S. today up in arms with a dossier of research papers of clinical trials conducted in Europe that have not made their way to North American medical community for one reason or the other (mostly a profit motive, or lack there of, of pharmacological companies). These were all about how to use the same drugs that appeared to have failed on a patient with a different delivery schedule and additional complementary drugs to produce a maximum, synergistic benefit. I was going to spring this on him if the scan results were bad. Well, no such dramatics. Instead of being a dignified, albeit tragic, heroine standing tall in the presence of her inquisitor, I behaved like a simpering teenager with dopey eyes muttering some incoherent nonsense at least this is how I felt. O.K. He is a pretty handsome dude, but still for a 52 year old woman with a modicum of intelligence to behave like this is nothing to brag about. Well, between a tragic heroine at the stake, and a happy airhead, I will choose the later for now, that is.</p>
<p>One thing I realized during last 14 months is, for recurrent advanced stage cancer like mine, treatment decisions are really more an art than science. Not all doctors are consummate artists. Or, should I say, a choreographer with a nuanced appreciation of his main performers and an artistic temperament to anticipate and internalize their changing moods so that he can come up with a moving visual narrative. It does not help that his two principal dancers are not exactly on their best terms. One with petulant mood swings, and the other in perpetual fear. I am that dancer in perpetual fear even though I do my best not to show it. I have been most reluctantly paired with this partner of mine. Even when I am executing my best upbeat move kicking high and leaping into the air, he is dragged on behind me like a flickering shadow of the ghost of the Christmas yet to come. Pushing him away and exiting the stage is not an option my cancer is deemed incurable at this stage, but potentially manageable, hence survival means coexistence. So, the show must go on as long as there are stage lights still burning bright. </p>
<p>Dr. S. choreographed for the likes of my partner many a time. But, I am a new. In order for him to be the best choreographer for this show, I must reveal myself to him. How my body works. How it feels. How it reacts. I also have something else he does not have. Having danced with this partner for last fourteen months, I am beginning to understand his moods, his temperaments, and his idiosyncrasies. Most importantly, I am beginning to develop a sense for his next moves. This instinct comes from spending day and night entwined in his painful embrace. I believe Dr. S. is an acclaimed choreographer, but he can do better with me sharing the hard learned insight of my temperamental partner. </p>
<p>Among the women of my diagnosis, the term NED is described lovingly as the consummate dancer partner. N.E.D. No Evidence of Disease - remission. Dancing with NED is a privilege everybody strives to earn. Everyone wants to be on his dance card. Yet, I believe this NED is the same guy I have been dancing with for months now. The trick is to help my choreographer come up with the best moves for him and me so that he spends most of his time on stage as NED, not his evil twin. When I was reluctantly cast for this show 14 months ago, I was mostly just a dancer an awfully inexperienced one at that, doing what the choreographer told me to do (though, in retrospect, I dont think I was ever an obedient ingénue I always questioned everything). Gradually, I have become a lead dancer and an assistant choreographer. Eventually, my goal is to become a co-choreographer, producer, and a director all in one. I believe this is the only way I can turn this show into the Broadways longest running hit. </p>
<p>To my credit, I am an excellent dancer. I can handle any contorted moves my choreographer can come up with. Not many cancer patients can go through near full years worth of weekly chemo with no meaningful side effects to speak of. I am also determined and capable of learning the lore of other professionals. I have already read Choreographing for Dummies. I am planning to advance my knowledge to a more professional level by reading, learning, and researching. I am very fortunate that I have a choreographer and director who respects my ambition to share some of his role. A lesser man would resent such encroachment. I am very grateful to Dr. S. for his open mindedness, even though he still rolls eyes over when I mention my cancer-o-meter. Well, there is still room for improvement for him yet! In return for his respectful appreciation for what I bring to the table, I try my best to be the most entertaining patient. After all, he quite frequently deals with desperate women in their worst moments. This guy needs a break. Last time I was there, I regaled him with a story about a hooker on board on our cruise to Bahamas the week earlier. (Those with a prurient leaning, please contact me about this story. Its a good one). </p>
<p>So, what now? What are the next steps? First, in the spirit of truth in advertising, I have to share with you a bit of a potential glitch. Today, they ran a new cancer antigen blood marker test, and the number went up slightly from 21 three weeks earlier to 23 (below 35 is normal). The number going up is always not welcome news. However, even before the number came out, Dr. S. already warned me that when the number is already within the normal range, it can wobble up and down for a couple of times, and later come down again to settle down and plateau. Furthermore, there is this little fact that the test was taken just two days after the scan. For the CT scan, you have to drink a liter of awful concoction for better imaging, and there is some evidence that it causes the blood test number go up a bit they dont know how long that effect lasts though. If next couple of blood tests still show the number going up, then we need to consider the very real possibility that the treatment worked to the point that it eliminated all the visible tumors, but is not working anymore to go to the finishing mile post. If such a scenario develops, I will have to continue treatment with different chemo drugs. I hope it wont come to that.</p>
<p>My lowest number during remission was 8. I still have some room to plateau again at that level. This is the reason why Dr. S. and I both decided that I should go for another two or three cycles (6-9 weeks). A clean scan does not mean that the disease disappeared. Loose cancer cells may be still floating around, and we need to get rid of them as much as possible so that they dont reseed themselves. I am dying for this treatment to be over though. I dont have any adverse side effects that so many other women have to chemo drugs. However, on this particular treatment, I gained about 17 pounds of water weight. For some, this may not be a lot, but if you start with ~111 lb, this is well over 15% of body weight. Imagine walking around with water bottles taped all around you!</p>
<p>If I go into remission, I will participate in a clinical trial for prevention of recurrence. When asked, Dr. S. already told me that there are several such trials that he is conducting that I can participate in. This is precisely the reason why I choose to be treated at MSKCC, not at my local NJ hospital. This level of access to all possible options, clinical or conventional, is what allows me to pivot back and forth as needed.</p>
<p>So, are you enjoying this show, so far? Maybe, enjoying has a bit of sadistic nuance, given the circumstance. But in a way, I want you enjoy this exquisite dance, rather than watch it with an ever increasingly foreboding sense of doom and gloom. I would rather have you as an audience of a Broadway show than spectators in a bloody boxing match even if you are cheering me on to win. I do not see my fickle partner as a foe to knock out in a killer punch. He is shaping me into someone that I actually like better on the mirror than one before he came along. He has led me to open my parachute fully, and I like the colors that I see. He made me more loving and loved. He brought me and my loved ones closer. He is a force of nature, and not necessarily evil. Most of all, he is part of me.</p>
<hr>
<p>PS. My husband came to the consultation with me. He was in Europe this week on business, and was supposed to be back tonight. Instead, he came back the night before, and showed up at MSKCC unexpectedly! I think he thought about the possibility of the scan results turning out bad, and did not want me to face it alone. If I could distill his essence, mass produce it, put it in a bottle, and sell, I would be a millionaire.</p>
<p>Sunrise, what wonderful news! You made my day. You are a fantastic writer … and an amazing dancer.</p>
<p>Oh my, what beautiful prose!</p>
<p>How is that book deal coming along?</p>
<p>So happy for you spectacular news.</p>
<p>Following your story with interest. I also have advanced cancer. Remission is not a possibility for me. After hearing it from doctors at two of the best cancer center on the West Coast, I have to believe it. But I found a new oncologist at USC/Norris whom I LOVE, who answers my phone calls himself and emails me back within an hour even on a Saturday (plus he’s good-looking, a snappy dresser). As a Bruin (UCLA) with a daughter who is currently a Bruin, I never for a moment let a football rivalry stop me from seeking the best treatment options. (I might have gone to UCLA but they failed to renew their contract with my insurance). Unfortunately, there aren’t many options for me, just chemo, as it turns out. So I’ll be back to the chemo routine after a short break over the holidays. I don’t want to appear defeatist, but I guess I have to face the reality of “getting my affairs in order”. Honestly, when the doctor tells you to do that, and the nurse says to enjoy every day, even if they mean well, it hurts so much. Nevertheless, I try to do something every day that makes me happy. Yesterday it was watching the Stephen Colbert/Herman Cain rally in South Carolina. I am so thankful for my job (I’m a teacher), which provides me with meaningful interaction with people as well as great insurance and a pension in case I have to retire early. Cancer ABSOLUTELY sucks, but when it hits you or someone you love, just doing whatever you can to feel NORMAL or to help them feel normal is what gets you through the day. There is no more normal, but we can pretend.
Ah, that felt good.</p>
<p>tpt,</p>
<p>I am so sorry to hear your story. I am the last one to trivialize your predicament by uttering mindless cheers and shallow encouragement like “you can do it - be positive”. I know what it is both you and are dealing with. I did not share this with my husband - I did some research on how my ending will be in case I exhaust all options. Looks like it can be managed painlessly. I also learned that in most cases, patients can be fairly active, living a normal life up until a few before it happens. This comforted me</p>
<p>that said, I am still an optimist - a realistic optimist, that is. I don’t think anybody really knows what truly awaits us and when. I don’t know how long you have been at it, and what kind, but there are always those who defy logic, gravity, and yes, doctors’ prognosis. </p>
<p>I wish you peace and love.</p>
<p>PS: on my internet research forum, there are several women who were never in remission but are hanging on for years with near non-stop chemo with a fairly good quality of life, going through one important milestone after another (graduation, wedding, birth etc)</p>
<p>^hugs tptshorty.</p>
<p>Sunriseeast, I wish my mom were around to read your writing. She, herself, was an eloquent writer but didn’t have the same view of her “dance” with cancer. She was the reluctant dance partner and never wanted to share her feelings and experience w/anyone. I suppose that was the sign of her time. When Cancer was still called the “c” word and most dealt with it in silence.
Through your writing, I want to believe my mom is finally sharing all that she felt and experienced. Thank you.</p>
<p>lilmom,</p>
<p>your memory of your mother brought tears to my eyes.</p>
<p>One of the major drivers for me to start writing was my children. if I succumb before I have a chance to have an adult to adult conversations with them, I want them to have something of me that is not just their mother telling them to wash their hands, to go to bed, and say thank yous and excuse mes. I wanted them to know me as a person who existed before them and lived a life with a three dimensional view of the world in addition to being their mother. More than anything, I wanted them to know the inner me.</p>
<p>My kids are reading all this now, and have gotten to know me as a full bodies figured, not some abstract - prematurely! This really brought them closer to me. I have a lot to be thankful for.</p>
<p>So uplifted by your good scan results. I am grateful for what you share here, and happy for your closeness with your family as you navigate this complex experience. Thank you.</p>
<p>Tptshorty…I don’t know what to say…I am sorry to read your post.</p>
<p>Good luck to you.</p>
<p>Tptshorty,</p>
<p>I am sorry to read your post. But as others have said, we are a bunch of big shouldered gals (and guys) so vent away.</p>
<p>Sunrise,</p>
<p>I read your posting and I just started singing (badly) I Hope You Dance.</p>
<p>for you cause you are living the words…
</p>
<p>Dance on, dance on!!!</p>
<p>Sunrise,</p>
<p>Great for you. Hope all keeps going well. I have been reading along, even though I have not posted in quite a while on this thread.</p>
<p>I hope you publish your meta research somewhere, since it sounds interesting. Even if you self publish your own blog of references, it might help someone along the way. I know you have enough to do, but I know you must have realized by now that the publications are one of the main ways that the knowledge actually gets shared among the doctors. If no one else pointed them out, good info remains obscure. I know you know that many other patients are out there searching, and they are not as talented or diligent or able as you to have figured out a lot of the things that you have.</p>
<p>Sorry about your mom, too. It is difficult to have such a relationship that is so one sided. I have had a few family members that fit that bill, so I know what you are talking about.</p>
<p>Yea SUNRISE!!! Cancer-o-meter is a powerful thing, I am so glad it was proven by the scans. :)</p>
<p>sunirise - Great news. I was very happy to read your update.</p>
<p>tptshorty - Sending you hugs. I hope your life stays normal for you and is always filled with joy and love. If you enjoy Colbert, then you must have loved the version of “In My Mind I’m Going to Carolina” that he sang with James Taylor on Thursday’s show. If not, go to his website to watch. It sure made me laugh and smile.</p>
<p>Many of you congratulated me. I thank you. Though I am not thanking you individually, please know that I am SO GRATEFUL for all the kind words and encouragement from every single one of you.</p>
<p>Lets not uncork the champagne bottle yet. I am not out of the woods yet. The blood cancer antigen marker has to come down a bit more, and I do hope that the number does not go up. If it does, all bets are off. I am off to more treatment with different chemo drugs.</p>
<p>I am keeping my fingers crossed.</p>
<p>Meanwhile, I am celebrating a little bit for the clean scan by not eating much last two days. I have been so disciplined to eat 70 grams of proteins and 12+ servings of cancer fighting vegetables while not having good appetite. There were nights when I woke up in the middle of the night and came down to the kitchen so that I can make protein green veggie green drink because I fell short of my quota for the day. So to reward myself for a clean scan, I decided to just let go and hardly ate anything last two days.</p>
<p>I wills start eating well again tomorrow.</p>