<p>Sunriseeast - We feel honored that you are sharing your story with us. I hope you feel our love and support. Sometimes, it feels as if our relationship is lopsided with you giving us so much. I can’t help but think that if we new you IRL, your fridge would be full of casseroles and your tables adorned with freshly cut flowers everyday!</p>
<p>There are so many of us that care you would have to allot each of us a mere second a day of your time to get any sleep! Enjoy your life to the fullest. I am so glad you had the chance to decompress with one friend and can enjoy the others as well. You are so very fortunate to have a life rich with people.</p>
<p>Ellebud, what a beautiful post! I am not as eloquent as others here, so I will piggyback on your post, if you don’t mind. I agree with Ellebud!</p>
<p>Sunrise, I am so sorry about your compatriot in cancer. It must have been awful to receive a good-bye text from her. And of course you are spooked, as she has had similar journey a few months ahead of you. Don’t feel guilty for these feelings. But she is not your twin, and her journey is not necessarily yours. You are so strong and resourceful. I have never encountered anyone like you before. If anyone can beat this, you can.</p>
<p>Thinking of you, always.</p>
<p>lilmom: Couldn’t agree more. </p>
<p>Sunrise, an illness like yours puts one close to the epicenter of life. The place where all the meaningful things originate. I get the sense that you were one who always sought the connection to the deep stuff, even when it was a bit “messy”.</p>
<p>I know what you mean about spending time with authenticate people who can bear witness to whatever is real for others. There is little I cherish more than that inner circle. I am glad that you have people who can walk with you.</p>
<p>Thanks for continuing to share and helping us to see our journeys more clearly.</p>
<p>sunrise, sending positve thoughts and energy to you. when I read your writing, it feels like I am where you are. keep fighting that damn beast is strong but you are stronger, you have already proved that!</p>
<p>What ellebud and downtoearth said. I can’t say it any better.</p>
<p>Thinking of you and wishing you strength and serenity</p>
<p>Since my latest post sounded rather alarming, I would like to share with you somewhat encouraging news</p>
<p>So, I took the X ray and ultrasound. I got the results of the cancer blood marker test taken yesterday. </p>
<ol>
<li><p>ultra sound shows insignificant amount of abdominal fluid build up. Before this new treatment started, I had fluid too and it was accumulating and progressing. At least it did not get worse, and more likely, better. this is good news. If the fluid build up accelerated on this new treatment, it’s a clear evidence that the treatment failed again. </p></li>
<li><p>X ray shows a hugely distended bowels in several places. larger than the stomach. this is the reason why I look like I am 6-7 month pregnant. Cancer is the cause for the bowel issues. I have thickening bowel walls indicative of serosal accumulation of cancer cells over the bowel walls. The explanation is that cancer cells over the bowel walls paralyze the bowels and prevent them from contracting regularly which is necessary to move things along. So, if the treatment is working, the bowel issue should also abate.</p></li>
<li><p>the new cancer blood marker number from yesterday is unchanged from one that was taken at the beginning of the new treatment, and this is also good news. I am one of those women whose bowel issues make the blood marker go up significantly. The previous number was taken when my bowels were doing better. The new number was taken when the bowels were misbehaving significantly. Hence the fact that these two numbers are essentially the same tells me that the new number minus the bowel effect would have been much lower - indicating that the treatment is working.</p></li>
</ol>
<p>At least for now, there is no reason to believe that the new treatment is failing. I am relieved. We need to watch carefully next few weeks and see where we go from here.</p>
<p>By the way, my good Dr S told me that he may have to order another CT scan to get a better understanding of the bowel issue, and he was very apologetic. He said “you know, I hate to make you go through the scan so soon after the last one - four weeks” I answered “Why so conscientious now? After all you have sprung on me last umpteen months? Let me count. Endless blood draws. Jailing me for 8 hours after each vaccine shot to study the reaction (this was during the clinical trial when I was a guinea pig), weekly poisoning (chemo)… the list goes on and on” (He is not my surgeon. If he were, the list would even include physical, bodily assault)</p>
<p>We both had a good laugh. He said, “well, you got me there!” I love my doctor. I am so lucky to be his patient. By now we work like two colleagues solving a challenging business problem. Whenever we meet, I bring my research, and he brings his, and we compare notes with regard to what’s the best course for me.</p>
<hr>
<p>by the way, given that I talk so much of my bowels these day, does it make my discussion scatological by nature? Am I a hardcore Freudian anal retentive personality? 
:)</p>
<p>" I love my doctor. I am so lucky to be his patient. By now we work like two colleagues solving a challenging business problem. Whenever we meet, I bring my research, and he brings his, and we compare notes…"</p>
<p>…and I’m sure he feels very lucky to be your doctor!!</p>
<p>well, if so, that makes him a truly exceptional doctor.</p>
<p>Most doctors would find a patient like me onerous and high maintenance. Many doctors may still prefer a docile, obedient patient who simply follows orders. I ask tons of questions. I need to have my medical curiosity satisfied. I challenge him regularly (in a good way, I must add). I don’t take anything he recommends simply because he says so. Luckily, he is very much on the bleeding edge of medical research, so he presents the data first to me. I guess he does that because he knows that I read all the research first hand, and I have enough statistical knowledge to decipher it (probably better than 99% of the doctors since statistics was my Ph.D. minor).</p>
<p>Any way, I get along with him splendidly. I give him more credit for this than myself, just as I give my H more credit for our successful marriage than myself. I could be a real pain in the a**, you know - challenging everything and questioning everything - with Olympic grade stubbornness to boot!</p>
<p>“I give him more credit for this than myself, just as I give my H more credit for our successful marriage than myself”
Ok, sunriseeast, I see a pattern here… :)</p>
<p>You. are. amazing.</p>
<p>“I could be a real pain in the a**, you know - challenging everything and questioning everything - with Olympic grade stubbornness to boot!”</p>
<p>The above may just be exactly what is making the difference!</p>
<p>A report from my favorite spa…</p>
<p>I have been admitted to the MSKCC inpatient for an extended weekend.</p>
<p>My bowel issues flared up again last two days. Yesterday I couldn’t eat anything, could barely drink. My belly looked like I am about 7 months pregnant. I see a pattern now. Last 6-7 weeks or so, I have been having an on going bowel obstruction issue. When I get hit hard, I become super careful, not eat for a day or so. Then my bowels rest and I get better. Next day I get my appetite back. I indulge. The next day, back to square zero. Repeat! I was doing well till the July the fourth holiday. We visited our dear friend in MA. Indulged a bit. Major problem. Don’t eat over the weekend, get better by Tuesday. Eat. A giant step back… After a day of not eating yesterday, I am already feeling so much better. Only 4 month pregnant look.</p>
<p>Yet, finally after much urging from my good Dr. S, I decided to follow his orders and check into the MSKCC inpatient hospital for a few days. I will give my bowels a complete rest. Nothing orally. Only IV for fluid and some glucose. It’s not an issue of pain or discomfort that finally motivated me to be a docile patient. That, I can tolerate very well. I have a very high pain threshold. When I had a major cancer surgery, I did not need any pain killers. What tipped the balance is the fact that while I am having a bowel problem, I won’t get one of the two cancer drugs, since it comes with a risk for bowel perforation. As such, when bowels are inflamed and distended (membrane becoming thinner), they can’t give that drug to me. Well, I figured, the root cause of my bowel issues is the cancer cells coating the outer layers of my bowels which paralyze them. As such, unless the treatment works, this problem is going to get worse and worse. So, I need to make sure that I get both drugs. I already skipped two doses due to my bowel issue.</p>
<p>My next infusion is tuesday. I hope to get my bowel issues under control so that I can pass “Dr. S. test” so that he will give me both drugs. Meanwhile, this spa performs a full panel of prodding, poking, and what not. Blood tests and scans galore. I feel special :)</p>
<p>I hope the CT scan taken today shows that the new treatment is working. if not, it’s going be yet another failed treatment… Maybe too early to tell anything definite, but at least if it shows that the disease is not progressing it’s good news. (the main reason for the CT scan is to see if bowel issues require more serious intervention - surgery. God, I hope not).</p>
<p>I have to say, MSKCC is truly a top notch facility. My H had been admitted to another very well known NYC hospital a couple of months ago (both ER and later for a surgical biopsy that required over night stay). Whoa… compared to that place, MSKCC is a five star resort. I feel truly pampered. I wonder what explains this difference? Nice facility. Pleasant and confident nursing staff. Gook looking doctors (my own Dr. S !!!). What more can you ask for? </p>
<p>My H dropped me off at MSKCC in the morning. I packed him off to work (he works in the city). He stopped by after work, and I just showed him the door just now. I want to flirt with all the male staff here, and having a husband around is a real turn off for that noble endeavor. </p>
<p>Some time later in the future, I will look back at this year, and I will make a stupid joke out of it (the singing bowels, the pregnant look, etc) and make everybody laugh. Well, that’s the plan of record for now. Something good has to come out of all this, right?</p>
<p>PS. now that I cannot eat, I am obsessed with mousaka. I haven’t had that dish for years, and it’s normally not my favorite. But somehow, I am now totally obsessed with it. When I finally feel OK enough to eat a real meal, I am going straight to a local Greek restaurant for a big serving of mousaka. Meanwhile, I have to resign to the fact that until the root cause of all this (cancer) is cancer control even when I feel deceivingly better, I should stick to near liquid diet for a while. Sigh…</p>
<p>I hope this gives you some relief over the weekend. I know the flirting will be good for your soul.</p>
<p>sunrise, feel better soon! I agree with you about MSKCC, as I have had a relative treated there.</p>
<p>“mostly liquid” diet…can you have smoothies? Yummy smoothies full of fruit, made with yogurt or perhaps almond milk? :)</p>
<p>I hope you get all better soon!</p>
<p>Thinking of you, Sunrise. And wishing that I had half your courage and determination.</p>
<p>
</p>
<p>Oh, but this is NOT mousaka!!! Anyway, thanks for the suggestion :)</p>
<p>When I was going through chemo I couldn’t eat/touch/look at chicken. But sushi and salad (normally verboten)…my nirvana! (And my doctor let me have it.)</p>
<p>So Sunrise: Here’s to moussaka!!! Lots of moussaka…and something wonderful for dessert.</p>
<p>Perhaps a blended moussaka smoothie. Hope they get you feeling better & eating sson.</p>