<p>^ Do something FUN today for me.
What a great idea- one good deed in honor of each of our brave- and witty- posters here. I’m on.</p>
<p>Wishing the best for all three of you, with all my heart. I will definitely do something fun today in your honor, and count my blessings with a little more awareness.</p>
<p>Doing something fun in your honor TPTshorty, the kitchen can be cleaned later- my plans just changed after reading your post.</p>
<p>I feel like a weenie writing this: I was diagnosed with stage 2 breast cancer almost 5 years ago. There is a potential complication, but I am leading a fairly normal (as anyone can) life. I want to third and fourth the mantra of living for today and planning for a healthy tomorrow.</p>
<p>We all have busy lives. And suddenly we are making deals with God (or the higher power or to the universe) to let us live until…fill in the blank. First my mother’s (may she rest in peace) mantra, “If you live long…you’ll live longer.” So, take everyday as a gift and a day closer to the cure. (A WEEK after my mother died of CLL they announced clinical trials of a new drug…and now they are starting a new treatment that seems to have been successful.) Stay focused on life…not death. (That is hard for me.)</p>
<p>What I have done in the last five years: My husband and I have taken our daughters (son is older and doesn’t want to travel with the parental units) to New York (3 times) Hawaii (4 times), London, and the city of my mother’s dreams, Paris. She never got to go.</p>
<p>And I bought myself a talisman: a very dressy diamond necklace for special occasions. Why? I want to get a lot of usage out of it. You know cost benefit of each wearing…I figure I will need thousands of weddings, Bar Mitzvahs, family dinners whatever to make this purchase cost effective. </p>
<p>I guess it is my deal to myself: make this worthwhile and look to the future.</p>
<p>To all of us, healthy or in transition to become healthy: Don’t look to the skies, but rather look to your family and friends, the medical people who will make you well, and be happy and plan for the future.</p>
<p>I check and occasionally post on a couple of cancer related forums. I have to say in terms of “intelligent thoughtfulness” of the discussion, CC parent cafe gets the top prize. </p>
<p>Thank you so much for your support. </p>
<p>havehope and tptshorty: so sorry that we are acquainted in this circumstance.
ellebud, I hope you are cured. I heard that early stage breast cancer with longer than 5 year remission is considered cured. So, keep it up.</p>
<p>Here is something I wrote very early on in my journey. </p>
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<p>I must confess, for about a nano second, I did wonder why me? I have lived such a healthy life! But then again, I thought, why not me? In fact, if there is a Cosmic Score Keeper whose mission is to keep everyones fate a fair and balanced deal, he would realize very fast how I have been given all the advantages in life and how unfairly fortunate I have been all these decades. Even with this disease, I have been favored by fate and fortune, and I have been given a winning hand to handle this condition with maximum odds of success while so many women have to struggle with both hands tied in the back. So, better not tip the Cosmic Score Keeper off of his mistake by letting my complaint about my current situation draw his attention to my ledger. He may feel compelled to “redress” the balance. No need to tempt fate. </p>
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<p>Even with this recurrence, this still rings true. I am still grateful for all that I was given. Yes, I am acutely aware that there is a good possibility that I may not be around see my college freshman S2’s graduation. When/if I go, I would my last thoughts to be “I loved and am loved. I did not leave a scorched earth of emotional devastation for my husband and kids. I did my best and did it with grace, dignity, and humor”. Even if worst comes worst, I think I can achieve this ultimate goal, and I am optimistic for that reason. </p>
<p>That said, I am still “rationally” optimistic that I will be around for a while.</p>
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<p>You seem to have the grace, dignity, and humor thing down pat. </p>
<p>Even those of us who have not been directly touched by cancer appreciate your insights on this very challenging disease.</p>
<p>Like HaveHope, I have also been inspired by sunriseeast’s story–and by the words of other posters in the cancer-connected fraternity here. My husband is in treatment for Stage 4 colon cancer, so while I’m sorry so many are facing and have faced similar situations, it’s comforting that we are not alone. My thanks to all of you. Gratitude, hope, humor, and fun–good suggestions, all.</p>
<p>Sunrise, I’ll be thinking of you today!</p>
<p>Wishing you lots of luck, sunriseeast, on this new phase with the new drug trial. Wishing all the best to you and to all the posters here who are faced with these very serious health challenges.</p>
<p>This is far from being a mainstream treatment option, but it looks very promising. A group of researchers develped a technique for making ovarian tumors “glow” so the tumors could be more precisely removed during surgery:</p>
<p>[First</a> fluorescence-guided ovarian cancer surgery](<a href=“http://www.sciencedaily.com/releases/2011/09/110918144946.htm]First”>First fluorescence-guided ovarian cancer surgery | ScienceDaily)</p>
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<p>There are no clinical trials in the US yet, but Phil Low’s group is apparently working with the Mayo Clinic to design a trial.</p>
<p>I just got an email from the daughter of an old friend. My friend battled breast cancer a couple years ago and won … only to have it recur last fall. She has fought like crazy, but she is now in hospice care and at the end of her time. Her girls are all in their 20’s, and she made sure they all know how very much she loves them, how very proud she is of them. They in turn have let her know how much they love and appreciate her. I am so sad, but I am so glad that they had time together to say what they wanted to say. We can’t control when our time will ultimately come, but we do have control over how we live until that time comes. </p>
<p>I am so impressed with my friend and with all of you here who are battling cancer. Your strength is inspiring.</p>
<p>Day 1 of the new round</p>
<p>I am going to take a break for one day from this “I am so grateful even with this disease since I have so much going for me” f$%^& bull s$%^ and let my curly red haired inner demon finally have day a day in court also (no, I do not have a curly red hair, but in my mental image, a demon was never a creature with horns and a pitch fork, but rather an uncontrollable girl with a satanic temper with flailing curly red hair). </p>
<p>Yesterday was non-stop frustrating. </p>
<p>First, I did not sleep well the night before. A lot on my mind, ya know?. I left home around 8:10 AM. I missed a train from NJ to NYC by a minute. (there was a traffic accident on the way). Huffing and puffing, I barely made it to platform while the train was still there, but the door was closed and it wouldn’t open. This is the first time ever I missed a train or a plane. So, I sat at the platform for close to an hour already in a sour mood. So, I was late to my appointment by 45 minutes. Had to wait for an hour to see a doctor. OK. Since I was late, I can’t complain. Though, I must say, even when I was right on time or even early, they had the track record of making me wait well over an hour so I wonder if it would have been same any way. </p>
<p>To make it worse, Lo, it’s not that handsome Dr. Sabatini but one of his minions – OK, forewarned here because he is not around on Mondays…. He is an eye candy. Last time when I was there, I told him “you know, you have groupies among us. And, unlike 18 year old airheaded bimbos going for a rock star, your groupies are mature, thoughtful, sophisticated, and intelligent” He blushed for a minute but had a presence of mind to collect his wits and say “And, modest too”. Don’t worry. It was a consultation meeting about recurrence and treatment, so husband was there too. So, don’t tell me that I am hatching any immodest plan behind my darling husband’s back. Besides, I am faithful to my first love, Dr. S in NJ who diagnosed me, operated on me, and saw me through the initial treatment phase. </p>
<p>Anyway, I digress. The doctor examines me, and she has a chaperon with her (when her assistant was about to leave, she clearly indicates “you are my chaperon, I want you here”). I wonder whether she thought I was going to pounce on her: you know, with a curtain drawn, and only about 1000 people milling around, you never know what impure designs some of the predatory cancer patients may have on you. Of course, I know the real reason. We live in a world of founded and unfounded law suits of all kind, frivolous or not, so she has to be cautious when her job includes examining women very privately. She asks me where my chemo port was. I tell her that it had to be taken out 10 days after my last infusion since it got infected. She says Doxil is particularly toxic to veins – maybe we should insert another port into you. I am now panicking. I hated that port. I am thin and bony so it sticks out a mile high around my collar bone and SO obvious. She IM’s Dr. Sabatini, and he says perhaps not necessary unless I starts to react badly around the vein (pain, rash, etc). First good news of the day.</p>
<p>Now, I am sent back out to the waiting room. I know that after chemo infusion, they will have to jail me for 4 hours to draw research blood a couple of times, so I am doing reverse engineering. Surely, they do NOT want to hang around well into the evening, so just for their sake, they are going to make sure I am not there beyond 6 PM tops. Two hours pass. I get nervous. So, I ask the front desk receptionist how late they open. She say 10 PM. My heart sinks! </p>
<p>After these two hours, they call me in for a blood test: they say, the lab has been busy so…. Another 2.5 hour pass I am finally called in for a chemo infusion. There, they explain the reason why everything was delayed: because the last week’s blood test showed something that they did not like, and they wanted to retest me. The blood results take at least an hour to come back, and it takes another 1.5 hour to prepare the chemo drugs once it is deemed “go”. Now I am going back to the elementary operations research principles I learned while at Wharton, and thinking, you guys knew about this a whole week. You could have drawn the blood the moment I arrived first. Now I am silently fuming. I take back all the things I said about MBA program being useless. I finally see the real life application of that education because it allowed me to have a theory based, empirically validated annoyance. </p>
<p>The chemo infusion starts. Takes an hour. It’s 5: 40 PM now. I know I will have to there till 9:40 because of the research blood collection requirement. Shortly after 7 PM, my husband shows up with food. He works in NYC. No, he is not a heartless cad who wound’t accompany his sick wife to a chemo suite. It’s my wish. I told him multiple times that there is NO reason why two people have to be punished when one suffices, and he should go home early since unlike me, he has to track back to NYC the morning after. Nevertheless, he shows up, and I am glad. But I still thinks that him showing up was a net negative on the collective sunriseeast & hubby dyad happiness index. The amount of “gladness” I had is far outweighed by the unnecessary aggravation on his part. Well, anyway, part of me is glad that he is not so good at optimizing everything on a rational basis.</p>
<p>I am finally out close to 10 PM. By the time I came home, it was close mid night with the train schedule and what not. So, it turned out to be a 16 hour day. They should mandate a certification process for an advanced cancer patient status. Those who fail will be assigned to less glamorous garden variety ailments like high blood pressure and indigestion. </p>
<p>Today, I am off. Tomorrow, I go back. This time, I am getting their experimental drug shot. The appointment is 10 AM. I know for sure by now, that I won’t get the shot until earliest noon, and then they have a schedule for drawing my blood 4 times for the duration of 8 hours for the research purpose. I am glad that I will be contributing to the advancement of science, though, I must confess that’s not my primary motive: I am doing it mostly for myself since it gives me the best option going forward. </p>
<p>PS. Going back to the regular programming of “gracious me”, I am SO GLAD that I am getting this Doxil treatment. I can really feel exactly where my tumors are located. I have a particular sensation in several locations in my abdominal/pelvic area and when I went back to the scan report, lo and behold, they talk about these areas. I am by now an incredibly honed machine in reading the signs of my body. When I had my first chemo, I knew within 2-3 weeks that the chemo was working since the sensations were much weaker than before. I “sensed” this recurrence well before any tests or scans and just only about 10 days AFTER the clean tests results. This time, I will know within a month top whether this second of chemo is working or not. It’s a very unnerving feeling that you feel your tumors growing day by day. It freaks me out. So, yes, I am incredibly grateful that I was offered this trial that comes with the drug currently nowhere to be had in USA.</p>
<p>It’s nice to meet your curly red haired inner demon, sunrise. I like her. I’m glad you get a day off today. I’ll be thinking of you tomorrow as you start shrinking those tumors with Doxil!</p>
<p>Thank-you and best wishes to all the posters who have shared stories.</p>
<p>Sunrriseeast, you continue to be an inspiration to so many. More power to you!!</p>
<p>Dear Sunriseeast, I too am very happy to meet your inner demon. She may be helpful to you during this research phase when you need to be a little less gracious and advocate for a care plan that is more reasonable than a 16 hour day. </p>
<p>Can you ask to be sent a copy of the blood results so you can learn if there are levels that may make them delay your treatment? If you had known there was a problem you may have approached the day differently. </p>
<p>Sending you thoughts of tumors shrinking.</p>
<p>sunriseeast, I am so happy to meet the curly red-headed demon! She has a compelling voice, too. You have every reason to complain - what a day to subject anyone to, let alone a chemo consumer! It’s strange that no one has put any thought into making the day more efficient and less grueling for the patients.</p>
<p>I hope that your internal scanner feels those tumors shrinking away before long.</p>
<p>“Theory based, empirically validated annoyance.” So very true. Unfortunately, what they’re optimizing isn’t your time. (Or, even your health.) If you want a kick, try and find a copy of, “If Disney Ran Your Hospital.” </p>
<p>I have never understood why peds, for example, don’t leave a bunch of empty appointments for Monday late morning and afternoon, because they will certainly have a bunch of patients who had conditions that emerged over the weekend, and where one of the doctors said, “Let’s get you into the office on Monday and take a look.” But no, they book up Monday just like it is any other day, and everybody waits and waits. </p>
<p>Sending good thoughts for extreme tumor shrinkage…</p>
<p>Admiration for the courageous women posting in this thread and prayers for improved health. I am in awe of you all.</p>
<p>Sorry you had a bad day, sunrise. May tomorrow be better. :)</p>
<p>It’s ok to have that demon on occasion. You are fighting and the demon is protecting you and advocating for you. </p>
<p>I am wishing you all good thoughts.</p>
<p>Sunriseeast, my mother had a non cancerous bone marrow disease, and was treated by a hematologist at a cancer center.</p>
<p>Many of her days were much as you described, spending hour upon hour waiting because they were overbooked and because of inefficient scheduling. I think you will continue to need your curly haired demon in this fight, to advocate for your needs in a system that treats the disease, but doesn’t always take the person into account.</p>