<p>Sunrise, I was so happy to sign on and see your good news. I hope that you and your husband continue to improve.</p>
<p>Sunrise - sorry to hear of your chemo side effects and your husband’s health concerns. I am overjoyed with your good news. I will continue to keep your entire family in my prayers.</p>
<p>Sunrise, thanks so much for continuing to share with us. Your insights during your journey are so inspiring. </p>
<p>You and your husband continue to be in my thoughts and prayers.</p>
<p>Thank you for the update, sunrise! And what wonderful news! I am so happy for you. :)</p>
<p>Your grace and eloquence continue to amaze me. Thank you for sharing your good news with us. You and your husband are in my thoughts. May you both find yourselves regaining strength and improved health in the weeks and months to come!</p>
<p>As one of my CML listserve buddies used to say when a fellow cancer warrior got good treatment news – “Yahoo! Yippee!” I am thrilled you are getting good results. After all the trouble you’ve had this summer, that good news has to be the best medicine.</p>
<p>Let the waves of love from everyone around you wash over and cleanse your wounds.</p>
<p>Give your DH a big gentle hug. He certainly needs one, too.</p>
<p>How are your guys doing?</p>
<p>Sunrise, thank you for sharing both the good and the bad news with us. I imagine that your DH’s health struggles make the surprise party you threw him seem all the sweeter. Sending both of you healing wishes.</p>
<p>Sorry for all you and your family are going through right now. Thanks for checking in and sharing the encouraging numbers. You have a lot of people rooting for you here. All good thoughts to you and your husband.</p>
<p>Thank you, sunrise. Glad to hear about the good number. Hope things improve for your H, also.</p>
<p>I’m so happy to hear such good news, sunrise! May the number continue to decline.</p>
<p>I am sorry to learn how serious your husband’s condition is. I hope that some good news comes through for him, as well.</p>
<p>Every day I have been logging on to see if we have heard from you. Imagine my elation in seeing you had posted AND the tremendous news. You are in my thoughts and prayers daily.</p>
<p>Sunrise - Glad to hear your update and good news on the marker! Keeping you and your husband in my thoughts! And thanks for checking in, you don’t have to write a ton, just a hello would be fine!</p>
<p>Continued prayers for you and your husband and all the other cancer warriors on this thread. While we celebrate your good news, we’re here for you every day regardless of whether it’s a good one or a bad one. So glad you have good people in your life like the friend who comes each week from CT.</p>
<p>Thanks for the post.
Have been thinking of you and glad for the good news.
Stay tough through the chemo.</p>
<p>Yeah!!! Continued positive vibes sent you and your DH’s way.</p>
<p>so good to hear your update, sunriseeast. I’m praying for continued great blessings for your family.</p>
<p>Friends,</p>
<p>you have been amazing to me all throughout this. I don’t know you personally (except one friend that I managed to communicate off channel and met in NYC), but you are all my friends and I am enormously grateful for the kindness you bestowed on me. Please know that you all are one of the reasons that I don’t consider my cancer an unmitigated disaster. It brought gifts, and you all are one of these gifts. You may think I am being unduly corny. Believe me if you actually met me, you would realize that I am far from “corny” :)</p>
<p>the cancer number going down was very meaningful because it went down by over 30% - showing unmistakable efficacy. Not only for the long term disease management, but for short term relief: enormous relief. It allows my surgical team to reverse the ileostomy they performed on me when they operated for bowel perforation and the septic shock. Those of you who are unfamiliar with this term (ileosotomy) can google it. I did not want to discuss in my previous posts since it’s not a pleasant subject to dwell on.</p>
<p>The significantly lower cancer antigen number means tumor bulks being reduced. this is a very important fact. The fundamental cause of my bowel problems is the fact that my
cancer metastasized not as identifiable solid tumors but as accumulating cancer layers over the bowels. That was the reason for obstruction and eventual bowel perforation. And a reason for the ilieostomy procedure: they couldn’t rely on my colons doing its job with layers of cancer cells over their surface, so they had to bypass it.</p>
<p>My ileostomy is temporary (hopefully) and reversible as soon as there is enough evidence that my treatment is working, and cancer volume of layers coating my colon is significantly reduced. Both my surgeon and Dr. S believe that if the current treatment is working, they
should be able to perform another surgery to reverse ileostomy and make me whole as early as middle of December (after three complete cycles of the current treatment). Of course, subject to encouraging scan results and results of several other tests. I hear that it’s a minor surgery: they use the surgical hole that is already there for the ileosomy. No fresh incision through the abdominal area again. there is no real estate left for me for another major surgery that requires a fresh incision at this point. I am told that it requires about three day stay at the hospital to make sure that all the internal digestive functions are restored to their normal operation.</p>
<p>this is one surgery I am actively looking forward to it.</p>
<p>The fact that the cancer antigen number went down rather meaningfully gives me some optimism that even if it may not bring me all the way to remission, it will give me a lot of options and choices, and most significantly buy time for other options to emerge. Yesterday during my consultation with Dr. Sabbatini, before the number came out in the middle of the night and was posted on my patient web portal on the MSKCC site, I raised the possibility of this number going up significantly (meaning the treatment not working). I
asked “what then?” He mentioned that there are still many options for me, and especially there will be a promising trial with the immunology angle that will start within 2-3 months that MSKCC will participate in. He is in charge of most clinical trials at MSKCC, especially
immunology related trials are all his trials. He said, if this treatment is not working, I will put you on another treatment that will hopefully just maintain the current condition for 2-3 months till I can get you enrolled in this new trial". I have always believed that the previous immunology based trial I was booted out of was actually working, and they used a wrong criteria to kick me out of it. So, it’s good to know that this option will be available to me.</p>
<p>This is why I love my doctor and the fact that I am being treated at MSKCC. None of these options would have been readily available at my original local NJ hospital. A definite advantage of not living in one of the remote areas. Especially regarding Dr. S, I love his
“there are still plenty of options for you” attitude. My friend, who passed away this summer with the same track that I was on only four to five months ahead, had a doctor who more or less gave up on her after a fewer number of treatment options than mine failed to work on her. I am sure it’s not his attitude that killed her. there may have been a lot more serious other issue she was dealing with that I did not have. However, for a patient to work with a doctor who exudes an attitude of no hope is a hugely demoralizing affair.</p>
<p>During this summer, there were some dark moments, and my reservoir of hope and optimism was at a low end. It was so assuring that when I was low on my vital resources, I had a doctor who thinks there are so many options for me. I am hopeful, positive, and optimistic by nature, but even for me, there were moments when I needed to rely on
other people for that - that other people execute that mission of carrying the bag of optimism on their back for me for a while. It is appreciated when friends and family do that. At times, it’s even more meaningful when my doctor does it since his medical opinion matters a lot. </p>
<p>This is NOT to diminish the role you, my amazing friends, are playing. Never. It’s just different kind of help and resources.</p>
<p>Regarding my H, his condition did not worsen precipitously. Registering for the transplant list is because his doctors see that it will continue to deteriorate and at one point he will need a transplant, and he may as well be on the list early enough because the condition might deteriorate fast without a notice. He is short on breadth. Uses an oxygen pipe all the time. Tires easily. His company has been enormously accommodating. They have the platinum health insurance coverage, and very flexible and accommodating policies that respect employee’s individual needs. Deserves the reputation for one of the best places to work for. He goes to the office one a week in NYC, and the rest of the time he works at home. Still works full time. This not only saves him the physical exertion of commuting to NYC, it allows him to be there for me. I don’t need him all the time, and in fact, I try not to even engage him during his work hours, but it’s good for us both to know that he is there in case there is an emergency. </p>
<p>when I think of all these, how can I feel self pity? I have been given so much - the friends, the resources, and the favorable condition. I have a lot to be grateful for. And, I truly feel bad for those who are struggling without what we have. when I think about them, i feel like a pampered brat. I hope we as a society, arguably the richest nation on earth (collectively), does more to help those without my resources. I don’t want to go into detail, but I am trying to do my part for that to happen. </p>
<p>P.S. I never want to miss the “teachable moments” when it comes to my children. I told them the other day, we are able to throw resources to ease our condition in times of dire needs. these days, I have a physical therapist and a full time house keeper. I cater in food from restaurants to entertain my friends at home - dinning out is iffy since my condition can go from good to bad in one hour (I still would like to enjoy social interaction with close friends). I use car service to and from NYC for my treatment as much as possible. All this without having to worry about our current cash flow or future retirement saving needs (you see I am still optimistic that I need retirement savings! 
). And, this is the result of years and years of having lived way below our means. I have always been too cheap to consider anything other than a NJ transit train to NYC when I was in a relatively good shape while on chemo treatment, and too reluctant to accept the offers from my friends to drive me there. However, I decided to hold all that attitude of self denial in favor of prudent saving on the side for a while. We worked hard, and saved hard, firstly for our children, and now to weather the storm like the one we are facing. when my H gets a transplant surgery, he will have to stay close to the hospital even after for about 3 months or so. we shall throw our resources to make it as convenient and pleasant as possible courtesy of the safety net we built over the years. this is the value I hope my kids practice. I think they have already internalized it.</p>
<p>Surnriseeast, I am loving your last couple of posts. Looks good.</p>
<p>Sunrise,
On a practical note, I thought of you earlier this week while flipping through the latest issue of Fast Company. There is an article in this month’s issue titled “Calling Dr. Watson” about the increasing use of the IBM computer by MSKC to personalize care for their cancer patients. I thought “wow” as I skimmed the graphic showing how physicians use Watson and thought of how often you have sung their praises. So glad you have the blessing of treatment from a cutting edge medical team.</p>
<p>Sunrise, it is so wonderful to hear from you. I have checked every day, looking for updates from you. I am rejoicing along with you for your good results and for your very resourceful doctor.</p>