<p>Thinking of you and sending good wishes your way. I hope you have a good weekend of rest.</p>
<p>now I have Greek food on the brain…</p>
<p>Sunrise, I hope you are well enough to have at least a few bites of moussaka soon.</p>
<p>avidly following your posts, sunriseast! glad where you are is top-notch and everyone has your back there.</p>
<p>Yesterday, some friends visited. They are very close friends. All of them productively engaged with the greater world. Part of me is very envious. I feel like it was a distant past that I had a productive outlet for my mental energy: something to do professionally, rather than just mere survival. Something that will outwardly focus me - something that will let me give back to the wider world. Give and take of creative energy. that’s the reason why I applied to the law school. </p>
<p>However, survival seems to be a near full time job these days. Honestly, I don’t see how I could start a law school this fall with all this going on. I hope i can execute on that plan next year. </p>
<p>I am likely to stay in the hospital at least till Monday. I have a chemo scheduled on Tuesday so I was hoping that they will just give me the infusion here on Monday a day earlier and discharge me so that I don’t have to come back to NYC on tuesday. Either that or they discharge me on tuesday, I get the chemo and go home. Either way, I would like to save myself one NYC trip.</p>
<p>I am not getting a particularly warm and fuzzy feeling that this new treatment is working. Maybe I am just super sensitive and paranoid. The latest scan taken two days ago is inconclusive. It’s too early to tell, but if there is any first reliable proof that the treatment is not working, I need to immediately switch horses. That way, there is a hope that I can stick to the plan to visit my family in Asia. If my condition does not improve, that plan has to be scratched. It’s not just the emotional aspect. I have some property issues that need to be taken care of. If something happens, I want absolutely no ambiguity that the financial benefits go to my H and kids rather than anyone else there, like my siblings. I am not a citizen there anymore, and I need to make everything unambiguous. </p>
<p>Yesterday, my H looked sad. I think this hospitalization makes it real that he may lose me. He said so as much. Though I take everything in high spirit and good humor, this whole thing is not exactly a walk in the park. By any objective standard, the trend line I am on is not really an encouraging one.</p>
<p>I got a note this morning that the friend who sent me a good bye text message has passed away. This is a woman whose path has been almost identical to mine so far, only a few months ahead of me. Not only I am so saddened, this scares me. I have never had anyone who died on me with so many things we share in this critical life and death journey. Identical diagnosis, actually better surgical outcome, same length of short remission, then on going treatment going through multiple treatment regimens. Everything same except she was only a few months ahead of me in timing. She was fine only a few months ago other than chemo side effects. How could things have happened so fast, so precipitously! I just don’t understand. I have so many questions and no answers…</p>
<p>I know everyone will tell me that she and I are not the same. We are not twins. All this rational advice, I internalize it. still, it does not reduce the gut reaction on my part.</p>
<p>That said, I remind myself that I am so much better off than so many people, especially those with my diagnosis. So, I feel fortunate. When I look back at this year some time in the future (I hope), I would like to know that I did my best to keep myself centered, and to protect my family. I think about this all the time - this guides my every action, every word… That is, I don’t want to implode. I don’t want to become the thing who thought that the world revolves around her simply because she has a deadly disease. I don’t want this fear to reduce me to be less than who I am. I don’t want to have anything that I would regret about my behavior, attitude, and words… Thoughts - that I can’t control. I should have some freedom from my own censorship, shouldn’t I?</p>
<p>So, I am in a somber mood today. BUT… this too shall pass. I need to think about some mundane things to get out of this funk. Now that I have an obsession with moussaka, I checked some recipes online. This never happened before in my life, recipe checking!!! Anyway, they all sound like a prescription for an instant heart attack. Too much animal fat is not good for cancer patients either. I will have to find a healthier version of the recipe…</p>
<p>Sunrise, I am so sorry that your friend died. What awful news! But try not to think of it as a sign that you will follow the same path. </p>
<p>You certainly deserve to enjoy moussaka when your system is up to it. I use cookinglight.com a lot. They have what looks like a great, healthier moussaka recipe:</p>
<p>[Lamb</a> Moussaka Recipe | MyRecipes.com](<a href=“http://www.myrecipes.com/recipe/lamb-moussaka-10000000222987/]Lamb”>http://www.myrecipes.com/recipe/lamb-moussaka-10000000222987/)</p>
<p>There are suggestions for improvements in the comments under the recipe.</p>
<p>sunrise, you have as much right to your fears as you do to your enthusiasms and optimism. They all make you who you are. I imagine you are recreating your self, day to day, as the new information arrives. </p>
<p>We are all enriched by every single post you put up here. Thank you very much. And I just know that your children are so well set, that you have given them so much, and will continue to do so.</p>
<p>“this whole thing is not exactly a walk in the park.” …understatement of the century. Thinking of you.</p>
<p>nymomof2,</p>
<p>I also found this light recipe for vegetarian moussaka.</p>
<p>low on fat, low on sodium, low on sugar (very important for cancer patients: cancer cells just love sugar), and high on fiber.</p>
<p>[Low</a> Fat Vegetarian Moussaka Recipe - Food.com - 240894](<a href=“http://www.food.com/recipe/low-fat-vegetarian-moussaka-240894]Low”>http://www.food.com/recipe/low-fat-vegetarian-moussaka-240894)</p>
<p>I am eager to try this when I can eat.</p>
<p>Thank you everybody for getting me vent a bit in my previous post.</p>
<p>If you do not vent you will explode. If you do not explore your emotions and understand them AND experience them fully you will sink into the, what I call the rabbit hole that is a hard climb to return to the new normal.</p>
<p>I am so very sorry about your friend. I grieve for all of us who lose this fight. But you are not your friend. And by living another day that day brings us closer to a cure.</p>
<p>One of my best friend’s mothers was diagnosed with breast cancer at age 35 in the mid 1960s. At that time it was a death sentence. It was called the Five Year Plan. No radiation, no chemo…nothing. EXCEPT along the way they came up with some treatments. And, at year 10 she was one of the first women to have chemo in the United States. Yes, she died…15 years after the initial diagnosis. She had three times the life expectancy at that time. You be the lady who with a new treatment will be able to bear oral testimony to the new survival rate.</p>
<p>Remember what I, and other have said before, you live long…you will live longer.</p>
<p>Your writing and clarity take my breadth away. You are a role model for patient advocacy and for taking risks and ownership and teamwork with your providers. The respect they have for you and for your research is evident. I have always found it to be a sensitive dance when asking questions and seeking more from my providers. You dance with the training and skill of a prima ballerina! I am sure that you make each and everyone a better health provider!</p>
<p>I admire your desire to handle your journey with grace and respect for your family. I feel like I have so much to learn from your reflections, and they make me think deep and hard. I am sorry that you are facing this challenge, but I feel honored to read your writing and thoughts during this challenging time. You educate all of us, and we in return feel enormous compassion for you.</p>
<p>I hope that you get your infusion on Monday, get home fast, and have less discomfort this week!!! </p>
<p>You are amazing!</p>
<p>sunrise how cute are the docs in your hospital? Question do they use IP chemo there? I hear it can be sucessful. would it kill the cancer strangling your bowel.
It is really hard to be friends with other cancer survivors, because you are so vulnerable when something happens to them. although it sounds trite, our bodies are different and how they react to this disease is different. That is what makes it so difficult to treat. plus the dang cancer cells, dont go away easily. So sorry about your friend. I just lost someone too, it stinks.</p>
<p>sunrise, I’m so sorry to read about your friend’s passing. </p>
<p>I understand how you want to get some property issues addressed. I would be the same way. However, something tells me that you give your H and sons other things every day that they will always treasure more than the material things.</p>
<p>thinking of you sunrise, hope you had a better night and a couple winks from some good looking docs. it’s funny that moussaka would pop into your mind, not something from your asian roots but something so oddly non-asian, right?</p>
<p>Sunrise, though I rarely post, I read all of your updates and am grateful for all that you share with us. Sending thoughts your way for a better week and continued strength and odds-beating.</p>
<p>downtoearth,</p>
<p>people are GOOD LOOKING here at MSKCC. I don’t know whether it’s part of the employment screening criteria or not, but the average “look quotient” is very high. Especially the nurses. Of course, my very Dr. S. is a handsome dude: that goes without saying! Since there are more women than men working here (half the doctors are women. Most nurses are women), I have decided to be a gender neutral connoisseur of beauty. My total addressable market size is much bigger that way! By now, I am flirting with everybody. I know where they live. How long it takes to commute, whether they have children or not, etc.</p>
<hr>
<p>I got out of the funk I had yesterday. Regarding my friend’s passing, I had known it’s coming for well over a week, since she sent me a good bye text. So, I had a chance to work that out, though it was still a shock to actually get the final news. But I know she was at peace. And, the obligation toward those who departed should not prevent the living from appreciate what life has to offer even in dire circumstances. This is what she would have liked it, and this certainly what I would like my family and friends to do. </p>
<p>I do not judge the devotion and love of my family and friends for me by how much they would miss me in my absence or how much they hurt if I am gone. Rather I judge it by how much they enjoy their own life in my presence, and how much they feel empowered, nay, even obligated, to experience all the little and big joy their own life has to offer after I am gone. Better yet, if they feel that my presence in their past somehow allowed them to better appreciate the joy of their life after I am gone, that is the greatest testament of their love for me. I am not the one to ask anyone “did/will you miss me”. Rather I would ask, “did/will you enjoy life while/after I am gone?” </p>
<p>So, after having had about a day to metabolize the news of my friend’s passing, I am bouncing back. I always do. It usually takes 24-48 hours. So, I am checking out what this fine facility has to offer other than good looking people to ogle. A volunteer stopped by and asked me if I would like a visit with a healing dog. She showed me the picture. A cute poodle. She seemed far better groomed than I. Why not? I will have a canine visitor for an hour. They also provide compliment messages. I signed up for one. I hear that they have a floor where Juliad students come and perform for the patients, and where they hold various art classes and what not. Definitely a place to stop by. Hey, this is the spa treatment that is not costing me anything - it’s a fully paid for vacation courtesy of Cigna. One place I am not allowed though is the 19th floor. that’s where all the foreign dictators and their wives come and get cancer treatment in secret. OK. I exaggerate. It’s a VIP wing. I asked one of the nurses about it. She said, it looks like Ritz Carlton hotel. Whoa, I would love to have a tour on that floor, but she says I can’t just walk in. No riff raff’s allowed.</p>
<p>Humor aside, I must say, MSKCC is a first rate institution. I thought so when I was getting treatment in the inpatient facility. the outpatient facility does NOT disappointment me at all. More than anything, people here are first rate in their compassion, competence, and amazingly warm attitudes from doctors, to nurses, to the cleaning staff. I have so much respect for all of them. When I am “serviced” in medical facilities, if I have a chance, I always ask “so, how are they treating you here”. This is not just a rhetorical question. It’s one of my most cherished values to make sure that I give my “business” to organizations and institutions that treat their employees with respect and dignity: that’s why I don’t like to shop at WalMart, and I want to give my business to CostCo. </p>
<p>When it comes to medical services, it goes beyond the value statement. I believe the way less empowered employees are treated correlates directly with the kind of care I get. If nurses, nurses aides are not well treated, not respected by the doctors, they won’t feel empowered to step in when they see something the doctors might have missed. After all, it’s the nursing staff who see the patient around the clock. I won’t feel comfortable being treated in a hospital where they don’t feel empowered to voice their input to the doctors.</p>
<p>In MSKCC everybody whom I asked this question (how do they treat you) answers with enthusiasm, including the lady who cleans the rooms. Having worked in large corporations my whole life, I know this does not just happen randomly. It’s the organizational culture that is carefully nurtured and encouraged. My hat’s off to the MSKCC management team. Job well done! One of the companies I used to work for treat their people horribly. I make a point of NOT buying anything from that company.</p>
<p>Regarding the status of treatment, the scan results are still inconclusive: it’s too early to tell whether the treatment is working or not based on what’s shown on the scan. At least it’s not getting worse. On the other hand, I haven’t felt this good in a couple of months now that my bowels had a chance to rest and recover. I will get the cancer blood test today. If the number is stable or even going down, great - given that my bowels are still inflamed (which elevates the cancer blood marker). If it goes up from the last number a week ago, that’s a sign that perhaps a new treatment protocol must be introduced (because if anything, since the bowel inflammation is less acute, the number should be lower). I have the feeling that it will be OK, and probably I will stay on the current treatment a while longer to see where it goes.</p>
<p>They will probably release me tomorrow.</p>
<p>PS.</p>
<p>I told my friend that I am very happy at MSKCC, and I felt like I checked into a resort. She asked, are they giving you facials? So, when Dr. S. stopped by today, I asked him to prescribe a facial for me, and some how, he seems unable to pull this off for me. OK. one notch down for him…</p>
<p>oh, by the way, I was stood up by a dog today. Poodle, the healing dog was a no show. How low can you get? there is not a shred of pride or dignity left in me!</p>
<p>sunriseeast, your strength is very inspirational and the fact that you are still able to have a great sense of humor is truly amazing. Thinking of you, especially at an even rougher time than usual. I’m sure the passing of your friend, though not a surprise, was still painful and sad. Sending hugs your way!</p>
<p>I hope tomorrow you either get a visit from the healing dog, or you go home! Maybe both? :)</p>
<p>May you be saluted by a pack of poodles, in formation, as you go home.</p>
<p>Poodles are way too fussy, must have called out because of the heat! Hope they have a more reliable dog to offer - golden retriever maybe? my own havanese would be too bouncy for any therapeutic effect. Hope you get good results and early release for good behavior.</p>