<p>The best response to your beautiful posts seems to be the “wow” expressed by others. While cancer has posed many challenges for you, from everything I’ve read here, it seems that you and your family have met these with grace and courage. I hope you continue to enjoy the love that your husband and sons have shown you for many years to come.</p>
<p>Isn’t it wonderful to see sons mature. Even if you live decades there probably won’t be a better time for your son to make this trip. Even without the Cat in the Cradle- son just like me song attitude (sorry for messing up on the song folks) life gets busy with a job.</p>
<p>He is no better than you are- after all you raised him to be the caring person he is. Plan the trip and enjoy. Money isn’t everything.</p>
<p>This most recent story made me cry. How wonderful your S1 is. He must take after you.</p>
<p>Your son is a gift to not only your family, but whoever is or will be lucky enough to know him. It is to celebrated when anyone, especially a young adult, has such a clear way of sorting out what matters most. I think we all know where he got that!</p>
<p>Sunriseeast, i was just thinking about you today and sending positive thoughts. Hope all is going well with you.</p>
<p>^^^ ditto, sunriseeast. Although I have never before posted on this thread, I’ve been following your stunningly articulate writings with a sense of awe and tremendous respect. My thoughts are with you and your family.</p>
<p>bumping up this thread…thinking of you, Sunrise.</p>
<p>Hope all is well with you, Sunrise!</p>
<p>Hello, everybody.</p>
<p>Just to let you know that your favorite 
late stage cancer patient is still alive and kicking…</p>
<p>It’s been three weeks since I started on a new regimen. I go to MSKCC once every three weeks, and the rest of the time, I am a pill popper! Chemo in a pill - cute, huh?</p>
<p>I shared my latest essay (The Absinthe Drinker and David) with my handsome boy toy doctor at MSKCC. It may sound like a bit of an exhibitionist antic on my part, but the motive was very much rooted in my desire to emerge as a long term survival. I wanted to present myself as more than a patient number XYZ - a collection of tumors with two feet. Dr. S. is a kind, caring gentleman, so far as I can see, but I am greedy - I want to be more than just one of his patients. I want to be something (someone) special - so much so that when he thinks about my case and my treatment, he pauses and thinks a minute longer - a bit more involved than usual - a bit more care and thoughts that will propel him to think more innovativey, more out of the box, and more inventively. If all usual remedies have been exhausted, I want him to push the envelope and reach far and out for potential options still open for me. I want him to not give up. In the cyber community of patients with my diagnosis, I hear stories of patients whose doctors told them there is nothing much more left to do - so early in the game. In fact, a woman who started this journey around the same time as I, and has been on a similar trajectory like mine (early recurrence, failed treatment, etc) was told by her physician that there isn’t much left do to for her, while Dr. S told me that I barely scratched the surface of all that they could do for me. He is an outstanding doctor, so I am sure he does his best to help all of his patients. However, one thing decades of a corporate life taught me is that there is “doing one’s best” and there is “REALLY DOING ONE’S BEST” - often the distinction is at a subconscious level. </p>
<p>Among cancer patients, it has become quite fashionable to become hyper assertive with the medical staff. The pendulum swung very widely lately. There are actively engaged patients who are over compensating the image of a docile and passive patient who has a blind faith in a highly authoritarian physician. There is even a booked titled “Patient from hell” - a story of a hyper vigilant patient who managed to get more out of his treatment by being hyper aggressive and demanding. </p>
<p>I do not buy into this. When I was running a large organization, I never felt that the “stick” approach was a good option. It may work on a short term basis, but is never sustainable on a long term basis. AND, I intend to have a very long relationship with Dr.S. I want him to an extra mile for me because he genuinely cares and because he is personally invested. In short, I want him to be sucked in my psycho drama. I want to gently engineer the path for him to be an active participant in this show so that he will be personally invested in making sure that the show must go on.</p>
<p>So, I opened myself up. I bared my emotion, my thoughts, my fears, and most importantly, my hopes in an effort to ensnare him into my lair. Perhaps, I forced a degree of intimacy that might not be welcome. But, I risked it. Surprisingly, he sent a very warm email response back: how much he enjoyed it, and how moving it was. Then, he connected me to a program director of a patient support program at MSKCC called Visible Ink. It’s a program that pairs their patients with volunteer professional writers on a one-on-one basis. It so happened that their annual event was this past Monday. I was invited, and I thoroughly enjoyed the event. They selected a bit over a dozen essays written by their patients and professional actors and singers “performed” the essays. Perhaps, next year, I may have the honor to have my writing included in the event. Today, I heard from a volunteer writer who was paired with me. I am very excited about getting to know her: she teaches at Smith College. When I was diagnosed with very poor prognosis, I vowed that no matter what happens, I will make sure this cancer will let me be more than I have ever been, not less. I will not shrink. I will expand. Expanding my horizon into the community of writers and their world – the kind of world I have not been exposed to before – is a new experience. One small way that I will be more than I have been, not less. I am excited.</p>
<p>Today, I had my regular consult with Dr. S. I gave him another essay. I told him that I intend to share one essay every time I see him, and just like Scheherazade’s Calif in The Arabian Nights, if he wants to hear the next story, he will have to keep alive till next time.</p>
<p>The Visible Ink program sounds perfect for you! I’m so glad you shared your essay with Dr. S. You sound great! Keep writing and please keep sharing!</p>
<p>Excited by the idea of actors & singers performing your writing and that of others!</p>
<p>Dismayed by the thought that unless you are an “exceptional” patient, you will fall through the cracks and not given every possible option. </p>
<p>And tickled by the image of you as Sheherezade! :)</p>
<p>Thank you for sharing your update. Something about serious illness as a catalyst to our deeper selves and portal to increased connection and competencies is very powerful.There is so much wisdom in what you write; your posts always get me thinking. Best with your new treatment regime.</p>
<p>I thinkit is important to establish yourself as a person. I was diagnosed the first time when i was 34 with two young daughters, I had a coffee cup with their pictures on it , I wanted them to see what was at stake. You are a wise woman sunrise</p>
<p>
This is so, so true–especially the subconscious part. It’s just human nature to work harder for someone when you connect with them.</p>
<p>
I love the image of you as Scheherazade!</p>
<p>“Today, I had my regular consult with Dr. S. I gave him another essay. I told him that I intend to share one essay every time I see him, and just like Scheherazade’s Calif in The Arabian Nights, if he wants to hear the next story, he will have to keep alive till next time.”</p>
<p>:). Very nice…</p>
<p>thanks for such encouraging words.</p>
<p>today, I got the latest blood test results back… Not good. the early indication is, this new treatment may not be working. </p>
<p>So, kind words from all of you were very nice - they soothed me.</p>
<p>I never though that this new treatment protocol ( a very gentle one) will put me in remission, but I was hoping that it will buy me some time so that I can do a lot of traveling this summer before gearing up for the heavy duty stuff later.</p>
<p>The good news is, the cancer is progressing slowly. So, it seems while it’s not working extra well, it is helping in preventing the cancer from going out of control.</p>
<p>I feel like a little child strapped in a car seat, constantly asking “are we there yet” - except, in my case, the destination milepost seems to be constantly moving further away…</p>
<p>I am starting to explore options outside the boundary of the conventional medicine. Statistically speaking, I am a very high risk patient, and as such, the risk/benefit equation that does not hold for someone with 90% of survival is worth the chance. I am not talking about crazy stuff like “eating cockroches to cure cancer” claims. I am talking about scientific, but at this stage, highly experimental stuff. I have already done the homework for these. </p>
<p>If you want to know what they are, you too must send positive energy in my way to keep me alive to hear the next story: The Arabian Nights, folks!</p>
<p>(I spent the whole day today metabolizing the latest setback. I am back on my saddle now)</p>
<p>Back in the saddle, again.</p>
<p>Happy trails, sunriseintheeast.</p>
<p>Sunriseeast…looks like there are going to be plenty of ups and downs…</p>
<p>Hang in there…</p>
<p>We’ll be riding along side you!</p>
<p>Lilmom, … Like! </p>
<p>Onward.</p>