<p>Sunrise, wishing you the strength to accept and trust in the love and support of your family and friends and to be kind to yourself in these moments of uncertainty.</p>
<p>Sunrise - I know you are here to express yourself, which you may not do in front of family and friends. You probably diclose more here to strangers than to your loved ones. As someone who doesn’t know you, every time I read your post, I generally feel so much burden on you. You want to control your destiny and you also want people to know you are strong and are still in control. I am wondering if you would feel better if you were to let it go a bit. It must take a lot out of you to be so composed, but you probably felt a lot better after your cry. I admire you for your spirit.</p>
<p>sunrise, I hope your cry was cathartic and theraputic. I would cry, too. </p>
<p>May today’s treatment be easy and uneventful.</p>
<p>good news regarding my sister in law who had a lung transplant surgery in Vienna, Austria.</p>
<p>Six days out of surgery, she is largely breathing on her own except some period here and there, and they finally woke her up today (they kept her heavily sedated till now), and she was able to communicate with her husband. They are keeping he awake for a few hours and sedated for the rest of the day so that the burden on her heart is minimized.</p>
<p>Amazing, this modern medicine!</p>
<p>She is recovering very well, and all signs are good. She may be discharged from the hospital in a couple of weeks. we will see.</p>
<hr>
<p>As for me, today I finished 12th chemo out of 18. Still no side effects and everything good. This regimen is the best breakthrough in the field of ovarian/UPSC cancer management in last twenty years, but one drawback is that the harshness of the treatment resulted in over 50% of the drop out rate in the clinical trial. Every woman I know who was/is on this regimen during last year either had to skip chemo sessions, take a break or reduce the dosage. So far, chemo has absolutely been a breeze. If I manage to finish the program on schedule without a single deviation from the protocol, it bodes very well for me. I think I will be able to do that. I am so grateful that my body is handling it so well.</p>
<p>I have mostly recovered from the bad cold, and that makes a huge difference in the way I feel both physically and emotionally. Normally a simple cold won’t leave me this weak, but I guess my body that was already being assaulted withe toxic drugs on a weekly basis just did not have a lot of margin to work with. </p>
<p>Thanks for your kinds words and concern after my last post.</p>
<p>Now regarding the whole issue of how much I should unburden myself emotionally and let others “take care of me” - this is actually not such a simple issue.</p>
<p>First of all, my optimism and upbeat outlook is actually genuine, 99% of it, that is. I actually experience clam and contentment most of the time. I am certainly not putting on a show. I was not faking optimism when I told my husband and close friends that in spite of all this, I have this weird feeling that 2011 is going to be the best year for me. I still do believe it, honest.</p>
<p>The remaining 1% is, yes, a very conscious decision on my part to avoid unburdening myself without a proper filter. It is this 1% that came to the surface and demanded attention last few days when I was already feeling pretty low on energy with the cold and the surgical incision spot pain. It needs to be given a voice, and by writing about it really helped - it’s safe way to give it an outlet. </p>
<p>I think “showing total honesty” in the context of having your raw, unexamined, unfiltered emotion spewing all over the place for other people to do the processing for you and picking up the pieces can be a very irresponsible thing to do. We are responsible, not only for our well being but for others’ emotional states (perhaps even more). I always felt that using one’s weakness as a cover for having an emotional diarrhea that is spattered all over the place for others to take responsibility for your pain is a very mild form of emotional abuse, or at least a form of narcissism. A child is allowed to do that. A responsible, mature adults should not do it. </p>
<p>If I let cancer seduce me to deviate from what I consider to be an important of my core belief, then it has already won, because it managed to rob me of my dignity. </p>
<p>When I first got an inkling of what I was dealing with, the first thought that came to my mind was profound gratitude that it’s me, not my husband or kids that will have to go through this. It’s not because I am a Saint. It’s party because I am selfish - it would be so much worse to be a “watcher” - I would rather be the one going through it than watch my loved ones go through it. </p>
<p>The main reason, though, is because in this family, I am the one best equipped to handle a crisis of this magnitude. God forbid, my kids should ever be in a position like this. Regarding my husband, as perfect as he is (to me, that is), he doesn’t come close to me, when it comes to persevering though eating $%^& day in and day out for an indeterminate period into the future. His forte is elsewhere, like being an unbelievable parent - I genuinely believe he is a better parent than I: the fact that both of our kids (age 19 & 17) turned out to be such emotional well balanced kids is mostly his doing. I am far more a blunt instrument if you what I mean. </p>
<p>So, my verdict that among this family if they have to choose one, I should bear this cross is not some exaggerated form of self sacrifice, not a defiant braggadocio, or a vague, quixotic sense of heroism. Rather, it’s a logical resource allocation and talent match.</p>
<p>Of course, nobody came to my family with a draft notice and said one of you must bear this cross, who will it be? The reason why I am rambling about this entirely imaginary scenario is because it illustrates the background of my conduct last several month.</p>
<p>I am much more capable than others in metabolizing all that happened, and turning the toxin into harmless substance. So, it makes perfect sense that I do most of it myself, rather than passing it along to others who are less well equipped to do so. It’s simply logical. When I think of the collective resources we as a family must muster to deal with this reality, I realize that we need to get the best bang for the bucks. And, that requires closely matching the tasks and the talents. </p>
<p>So, I bore most of it, not out of heroism, but as a sensible business manager who is looking to get the maximum “corporate” (my family) score on the cost/benefit analysis. </p>
<p>Of course, there are ways to do it better so that I won’t have to occasionally find myself over taxed - like this past week. And I admit I can go too far with this “logical resource allocation” schtick. I understand it’s also a mild form of narcissism. Guilty as charged. </p>
<p>To my defense, I would like to add that one gift cancer brought me I almost immediately recognized is my willingness to be far more porous than I ever was with my close friends so that they can come closer to me than ever. Their care, concern, kindness, and generosity has been unbelievable. I genuinely don’t understand how it is that they are so amazingly wonderful to me. I don’t feel that I have done anything to deserve it. To one of them, I joked “you know, I have been wrecking my brain to figure out why you are so good to me, and I came to a conclusion that it has nothing to do with my virtue, and everything to do with your pathology” 
</p>
<p>I also realize that I do need to find a more and more middle ground where I can “reasonably” let my angst come through more so that others can help me. This, my friend, is still a hard thing for me to learn. It goes against a life time habit.</p>
<p>All of you on this thread has been so kind to me. Even though I don’t know you in real life, you are my friends, and you provided me a safe outlet for me to let go. For that, I am immensely grateful.</p>
<p>sunrise- keep running that marathon- the last few miles/treatments are worth the extra effort they often take. Beat the mid race fatigue- only a few more sessions.</p>
<p>Regarding your emotional health. Please relax about yourself. Allow yourself to be a flawed human like the rest of us. There is stress is constantly maintaining a self image of being the perfect patient (ie doing all you can to combat the cancer)- the race to keep living is never over until the minute you die- that can be more than a zillion marathons, there is no way to live at a top pace the rest of your life- many decades perhaps. Leave room for enjoyment and breaking the rules you have laid down for yourself. You sound like a perfectionist (as they say, it takes one to know one…). Sometimes you have to think that “what will be will be”- if you don’t follow your regimen so strictly you are just as likely to do well attitude. The regime you choose to insure you beat the odds may mean you do so, but beware of the pressure you inflict upon yourself in achieving your goal- you also want to have pleasure during the weeks, months and years of doing so. Right now you are immersed in chemotherapy and getting well, but take time for simple pleasures, too. It may sometimes mean making lemonade out of lemons, taking time to smell the flowers or whichever of the numerous cliches you can enjoy.</p>
<p>I’ll bet a new realization of the whole cancer business is hitting you- different stages (not my area of expertise so I can’t state any). Trust me, you don’t need female parts/hormones to be emotional about things. LET your family- especially your husband- take care of you sometimes. Flatter him with the knowledge that you need him and his love/support/help.</p>
<p>You done good- you not only passed the test, you aced it…</p>
<p>Final words (for now). You not only are going through the major life changing fact of having a cancer, you are also at an age when other major life changes take place. The loss of hormones, kids growing up, realizing you are aging in many ways- gray hair, bifocals- so many different reasons to need to momentarily decompensate. More than enough said.</p>
<p>We are here for you, sunriseeast. Unload whenever you need to.</p>
<p>Prayers for your continued uneventful progress through your protocol.</p>
<p>Thinking of you and your SIL wishing you both continued improving health</p>
<p>A good magazine for anyone with cancer or a family member with cancer is CURE. It presents a good deal of research info and is free.</p>
<p>Now, my chemo regimen is approaching the finishing line. Last Friday was the 13th of the total 18 weekly chemo sessions. Still no side effects: no nausea, no neuropathy, no change in tastes, no fatigue that can be solely attributed to chemo. I am a minor miracle at the oncology wing: nurses told me that no patient came this far along on a weekly chemo regimen without a single missed/delayed session or downward dosage adjustment. </p>
<p>The only side effects I could not escape from are hair falling out and the white blood cell count tanking. The funny thing is, in the hair department, I did not become completely bold: just a lot of thinning out. I shaved my head, and some hair strands have even grown since then. I kept my eye lashes and eye brows. Annoyingly, my leg and underarm hair also did not fall out completely either. Oh, well: I will take this package deal! In terms of the white blood cell counts, I am getting shots three times week to force the bone marrow to produce white blood cells. These shots are life savers. There is no way anyone could stick to this weekly regimen without them: on this regimen, the body is simply given no time to recover on its own to produce these blood cells. </p>
<p>I am greatly encouraged that my body is handling this harsh regimen so well. I actually read the clinical trial results (published about 1 1/2 year ago) that made this protocol a viable treatment option. When I read the results, my eyes literally popped out: as someone with a significant graduate level training in statistics, I noticed the results were about as statistically significant as they come: in terms of its effect on progression free survival (length of remission) or overall survival, the confidence intervals of the experimental group and the control group did not even overlap (sorry for the nerd speak: just trust me - this is really BIG). This was more significant than any other clinical trial results I read regarding my cancer anywhere. I believe this is about the best breakthrough in the field in YEARS (actually this was echoed by a couple of experts in the field) </p>
<p>The down side is, the drop out rate of the women on this harsher protocol is over 50%. (by the way, the efficacy of this protocol INCLUDED statistics of the women who dropped out. I am assuming that the efficacy of the protocol among the women who managed to finish the program is even more outstanding). </p>
<p>Now, this brings the subject matter of self advocacy on the part of the patients. When I went in for a treatment option consultation with my oncologist, I was up in arms to insist on this protocol, but he offered it right from the beginning, so it was a happy ending. Since then I noticed that majority of women were not offered this protocol by their doctor. And, this is really puzzling. This protocol does not involve new fangled drugs. It is simply different way of administering same kind of drugs (different delivery schedule and a bit higher dosage in aggregate). If a patient can’t handle the weekly schedule, she can be put back on the standard delivery protocol later. In short, there is NO DOWNSIDE to starting a patient on this protocol. I am amazed by how most doctors still fail to offer this protocol as the first priority consideration to their patients. This is totally inexplicable to me. Perhaps not all of them are on top of the latest development. </p>
<p>The more I get to know about the way the medical industry operates, the more strongly I feel about patient’s self advocacy. There is way too much unearned reverence many doctors enjoy. There are top notch mechanics and so-so ones. There are wiz bang software developers and just passable ones. Why should a medical community any different ? Yet, most patients (most women in my condition) don’t seem to have a healthy dose of skepticism to make them second guess their doctors, and challenge them, or bring to their attention the latest study results that not all doctors seem to have time to digest on their own.</p>
<p>Of course, this is in no way to disrespect the medical professionals. Majority of them, I am sure, are outstanding professionals doing their best for their patients. I am simply stating my belief that there is no profession where EVERY practicing member is perfect, and we, the patients, must have the willingness and readiness to be our foremost advocates.</p>
<p>
</p>
<p>I work in the medical field and tell people this all the time. Physicians are humans and are thus subjected to biases, mistakes, misinformation, bad days, patients they don’t like, lack of information, poor training or they’re just plain not good doctors. Never assume anything when it comes to your own health and if you aren’t comfortable with what they are telling, go somewhere else. People who work in hospitals pick up on this eventually, which is why they tend to be so insistent about their own medical care when they need it.</p>
<p>Great to hear you are doing so well. Love reading your posts. You are a great model for us all.</p>
<p>^^There is a joke, What do you call the person who graduates at the bottom of his/her class in med school? Answer: Doctor.</p>
<p>That being said, of course there are differences in the top of the class and the bottom. And even among extremely competent doctors, sometimes they have egos that make them believe they have all the answers. When the patient comes to them with an idea derived from on-line research, their response is, “Stop researching.” </p>
<p>Great news on the chemo toleration! Keep on keeping on. :)</p>
<p>Sunrise, you are an inspiration. Praying that you get better soon and give us all the benefit of your spirit for a long time.</p>
<p>by the way, you all have been terrific. though I don’t know you individually and I can’t thank you individually, please understand I am so grateful for your support. This thread has been a safe place for me to unload a bit of myself, and you all have been extremely gracious and generous with your support.</p>
<p>I have been having a persistent cold for last two weeks. Normally, I am so healthy a cold shouldn’t last this long or take me down a notch (or several notches) in terms of energy level, general mood and what not. </p>
<p>At this point, my body, three months into a weekly assault by toxic chemicals, is busy making sure that I don’t suffer from the chemo side effects, and has no margin for “unplanned” events like a common cold. </p>
<p>I don’t enjoy being the sickly one - a very unfamiliar and unwelcome role that even advanced stage cancer and chemotherapy did not force me to play, but this common cold has done it - it does crimp my upbeat style. Oh well, this too shall pass… All in all, I should be so grateful: no one I know has breezed through this harsh chemo regimen like I have so far… (knock on woods…)</p>
<p>Hang in there and double-check with your healthcare team about whether you may need to defer treatment to give your body a chance to lick that stubborn cold. Personally, I know that colds can knock me & my kids & hubby much harder than others. Especially when you’re having chemo & radiation, your body is busy dealing with that and has a tougher time fighting off infections.</p>
<p>Be kind to yourself but check with your team about what to do at this point. There is a LOT of art in medicine, especially when you’re at the edge of their knowledge base.</p>
<p>“…the confidence intervals of the experimental group and the control group did not even overlap…”</p>
<p>Wow, sunrise, that is amazing. I’ve cossed my fingers and my toes and knocked on wooden surfaces many times for you. I hope that the cold is going to be a minor bump on your road to recovery.</p>
<p>Hope your cold is retreating and your strength advancing.</p>
<p>I hope you take full advantage of the cold to treat yourself to a cozy day in your PJs and fuzzy slippers, with chicken soup and orange juice, a good novel and a DVD you’ve wanted to watch. We all need that kind of sick day now and then! :)</p>
<p>14th of weekly chemo done. 4 more to go, unless my oncologist wants me to extend it for a good security measure.</p>
<p>I am finally getting out of the cold after 3 weeks (long time in coming!!!), and boy, does that make a difference in terms of how upbeat I feel: the fact that the body seems to have more energy is lifting the spirit immeasurably. I am feeling good enough to exercise again at a full speed and duration. </p>
<p>However, in order to balance this out, of course, I had to be pulled over by a cop for making a questionable u turn right in front of the hospital where I got chemo this morning. This guy threw the book at me and gave me a ticket worth 2 points. </p>
<p>My H thinks I should have taken my cap off to show my bold head in clear view (I did say I was late for my chemo appointment!). Oh, well, the days of flashing a sultry smile with a come hither look are over, and if the cancer patient status fails to generate any sympathy, what other options do I have now? </p>
<p>Some years down the road, the decrepit, frail, broken down old age persona may do the trick - ah, this is the privilege worth doing my best to see that it happens!!!</p>
<p>If it’s not too inconvenient, I would show up for the court date on the ticket and play the ‘C’ card to get rid of the 2 points. A municipal judge may show some sympathy and reduce the infraction.</p>
<p>NJ2011mom,</p>
<p>this is exactly what I was advised to do. Funny thing is, the cop repeated about 3 times that if I want to lose the points, I should pleat NOT GUILTY on the ticket, mail it, and show up at the court. </p>
<p>I talked to a friend who live in that town, and was told that the township got really smart. Instead of just collecting the fine, and have the insurance have all the fun of collecting a hefty surcharge for years to come, they offer to remove the points in exchange of hefty surcharge on the fine they collect if the driver pleads not guilty and shows up at the court.</p>
<p>I think I will take this route. I am still better off not getting those points.</p>