<p>I agree with missypie. You have a great talent for writing and a unique and healthy perspective on you illness that could help so many people in a similar situation. Thank you so much for sharing your thoughts and experiences. I hope, of course that I never have a diagnoses of cancer but, if I do, I know my outlook will be changed for the better by your words.</p>
<p>I agree. You write beautifully, and your kids, husband and you are all inspirational.</p>
<p>Hi Sunrise!</p>
<p>Thanks again for a wonderful post. I’m so happy you continue to do well. I like the book idea too!</p>
<p>It’s funny that many of you are egging me on to write a book. I periodically send update email to a circle of my friends and family members, and the contents of many of the same posts on this thread have been the main stay. I am getting the same feedback.</p>
<p>Your platitudes are finally getting to my head. So, today I went to Barnes and Noble to see what kind of books are displayed. This is my business training affecting my personal life. Before you venture in a new business project, you survey the market and check out the potential competition. </p>
<p>I was amazed to see 1000 “bimbo books” and thousand “diet and exercise” books, and another thousand cook books. By “bimbo books”, I am talking about books full of amazing words of wisdom from women with questionably developed intellect about how to act in bed to enthrall the guys, how to beat love competition, how to apply makeup just so… You get the idea…</p>
<p>So, I came to a tentative conclusion that there may, may, may be a small niche for a cancer book that does not revolve around a “maudlin, however heroic it may be, and heroic struggle against this mighty enemy” theme…</p>
<p>Well, not that I am putting potential publishers on my speed dial. I am mostly writing and keeping journals because it has been enormously therapeutic for me, and it’s another way for me to turn this cancer of mine as a net positive experience. This is very important for me. </p>
<p>Anyway, since I am writing continuously, I can decide later whether I will take a more formal step. </p>
<p>As much I give you all the credit for giving the idea of writing a book, I have to admit there are two people who really made me think perhaps I can.</p>
<p>First is my older son. Though he may not have as much life experience as I do, in terms of a raw intellectual power, he is my superior (I noticed this a long time ago), and has a very high standard for writing (going to a school best known for intellectual rigor and having a mentor there who teaches writing). The other day, after he got one of my update email, he called and said “mom, your writing is so powerful I sat there for few minutes just mulling over what you were saying…” </p>
<p>Second is my husband’s most significant ex-girl friend. Over the years, she became a good friend of mine also. In fact, I think she should have married him - her loss is my gain. She was very moved by my updates and she started to share them with her close friends, and reported to me that there are many people that I don’t know who were touched by me. </p>
<p>When I was getting serious about him many many years ago, one of the things I checked out was the kind of women he was involved with in the past and how he he parted with them. I get very suspicious with men who keep breaking up badly with his significant others. One back breakup. OK. perhaps the other party was really nasty. Repeat that pattern, I can see either you are a really nasty SOB or you have incredibly poor judgment in picking nasty awful people as your significant others (if so, what does that make me?). Either way, a very poor bet. I wanted to hedge my bets. In life, sometimes, couples break up. Though I would like to have a long happy marriage, in case it does not work out for whatever reason, I would never want to get mired in an acrimonious divorce with nasty custody battle. I wanted to choose a man who would behave in a dignified and respectful manner even in a break up. </p>
<p>It was very easy to track down his ex’es, since most of them were still in his life as good friends. That was a huge sign of confirmation for his good character. The best was this friend - the most significant ex (I will call her T). Shortly after we got married, she came to visit us and stayed with us for a few days (she was living in a different country), and I was very impressed with her. I had a sigh of relief for the good choice I made in one of the most important decisions. It confirmed that indeed he had a good judgment for character, and he was respected and cherished enough by such a woman to remain as a significant presence in her life as a life long friend. </p>
<p>Some people may think I was playing with fire. However, I always felt that the more freedom I give to my loved ones to fly away from me in search of better things that I can offer, they more often they come back to rest by my side. Hey, perhaps the more freedom they feel they have, the less temptation there is for them to fly away to begin with… From the beginning of our relationship, I always felt that whatever slips through my fingers that easily has never been mine to begin with…</p>
<p>When the spring comes and my chemo is over, I would like to have a small road trip with T. that will be lovely.</p>
<p>
That is exactly what I just did. Your words harvest emotion.</p>
<p>Physician here. There is a need for cancer patients to tell others their wisdom- especially those with your wise posts. Share your posts with your nurses and others and I’ll bet they say the same thing about publishing so many others have.</p>
<p>My husband learned to accept and live with my idiosyncrasies. One of the glaring examples is my tendency to go all the way and beyond if I like something or if I get excited about some scheme. Having been raised in a culture that values greatly balance and moderation, I turned out to be a misfit and rebel with vengeance. My motto has always been Nothing worth doing should be done in moderation</p>
<p>People who thought my lack of moderation could sometimes result in catastrophic consequences have plenty of examples to quote. One such event my husband just loves to talk about happened when we moved to our first home. It was a lovely starter home with a beautiful shaded backyard. I decided to be a bit of a gardener, even though I had never known anything on this subject matter. </p>
<p>One thing a graduate school education gives you is the foolish belief that everything and anything can be studied and mastered by reading a book and drawing up and executing a sound plan. So, with the same resolve I had as a Ph.D. candidate getting ready for the qualifying exam, I went to the book store, and came home with a veritable arsenal of gardening books. In the end, I decided that for a shady garden like ours, impatiens will give us colorful blooms all summer. So, off I went to a nursery and came home with 500 impatiens plants. </p>
<p>My husband was horrified. Where are we going to plant all these? How long will it take to plant them? How are you going to water them I silenced him with one withering look I have that effect on him. It took a hard labor dawn to dusk for a whole weekend to plant the impatiens. When it was done, it gave me a measure of pride I didnt have before: I was now a truly a Renaissance woman with a solid career in high tech with a touch of Suzy the homemaker as a finishing touch!</p>
<p>It would have been a nice story if I could tell you that the plants settled beautifully, and we enjoyed a paradise on earth for the whole season. Well, it did not happen. I did not prepare the soil properly, and yes, we did not have a solution to water all these plants. Most of them did not survive. </p>
<p>Score one for the snickering critics!</p>
<p>I am ever an optimist, always hopeful for the second and third chances. So, when we bought the next house, the house where S2 was born and the house we still live in, I hatched another scheme. I thought I learned the lesson of high maintenance annuals. So, I researched for fool proof garden beautifying solutions. Voila! The long lasting bulbs some of which could even be perennial. Order a variety of bulbs to cover from March to September. Just stick them in the ground in the fall, and watch the garden bloom from early spring to late summer. Sounds like a plan! </p>
<p>So, with characteristic enthusiasm and waving the banner Nothing worth doing should be done in moderation, I let my fingers do the work: I ordered close to 1000 bulbs through a mail order outlet. The company was so impressed with the sheer quantify of the order, and , figuring that I was the neighborhood king pin doing bulk ordering for the entire block, gave me a huge discount, and encouraged me to open a business to business account. </p>
<p>In that fall, I learned the true lesson of what it feels to be a manual laborer working the soil. I developed a healthy respect for those who work with their hands to make a living. I had to do backbreaking work for two solid weekends to plant all these bulbs. My husband watched me toiling with a mild look of alarm on his face while muttering a few perfunctory words of encouragement. Whether he was genuinely rooting for my cause or not, I couldnt tell something tells me he was not the most sympathetic supporter in this endeavor.</p>
<p>I was so excited about what I would reap in the spring I spent many pleasurable idle moments during the bleak winter visualizing the explosion of colors and shapes. Just to make sure that indeed everything was going just fine, I even dug out a few bulbs to see if anything was happening. Yes, though nothing showed above ground during the winter, the bulbs were growing roots and setting in. Great! Now, what could possibly go wrong? This is a done deal. Finally, the spring came, and yes, as promised, the shoots started to come out. And, this is when another catastrophe struck. </p>
<p>We live near the woods with a pack of roaming deer. A thousand bulbs sprouting made our yard an extravagant gourmet buffet for them. I think the entire deer community of the whole county learned about this bonanza. I am happy to report that a few bulbs did survive. They happen to be the perennial varieties (day lilies and narcissuses). Every spring they still fitfully and gingerly sprout to remind me of my wild and naïve enthusiasm of the years gone by.</p>
<p>Score two for even more gleefully snickering critics!</p>
<p>Yet, I believe this lack of prudence and reckless extremism are what makes me special, though special in which direction is open to interpretation. Now, with the advanced stage cancer, I have the third round, and this time, I am convinced I may finally reap the benefit of my cherished motto - Nothing worth doing should be done in moderation</p>
<p>American Cancer Societys recommendation for 7 servings of cancer fighting fruits and vegetables a day? I will do a dozen servings. Limit the sugar intake to a few small servings of deserts a week? Not a gram of sugar in my diet. Exercise 45 minutes a day/5 days a week for a good prognosis? I will do 75 minutes everyday. </p>
<p>Beyond these actionable parameters, I believe the most important factor is the rationally grounded optimism that will start a cascading chain reaction of a virtuous circle of healing. Within a few weeks post surgery, I started to have the sense of well being and contentment that is so obscenely incongruous with the situation I found myself in the newly minted cancer patient diagnosed at the most advanced stage facing an intense and aggressive chemotherapy regimen everybody assumed to be a harsh experience. Given how well I am responding to chemo, by now, I do have a rational ground for being optimistic. But back then, what reason did I have to have such a sense of well being and unbound optimism? </p>
<p>I was wondering about this for a while. I am not a religious person: I dont pray and find solace in Gods mercy. So, unless God has a twisted sense of humor to reward an unbelieving heathen while ignoring many million true believers heartfelt plea for mercy, any divine intervention is out of question. One can come up with a new age sort of quasi spiritual explanation. But, that sounds pretty lame too.</p>
<p>Then, I had an epiphany. I believe, deep down, I realized, without realizing it, that the key to my survival is the optimism and a spirit of hope that will infuse my body with the right signal and create an optimal terrain to deal with my medical condition (I do believe in minds power over body this is different from being religious or spiritual). </p>
<p>The ability to recognize the gifts among the losses I experienced. </p>
<p>The ability to tune into a faint voice of hope while facing a relentless barrage of dire news. </p>
<p>The ability to see, in all this, a myriad of opportunities to give rather than receive. </p>
<p>The ability to reach out to the world and grow, rather than withdraw into an ever shrinking domain dominated by fear and uncertainty. </p>
<p>Most importantly, the ability to turn what could potentially send most people down to the bottomless pit of an abyss into something positive something life affirming so that in the end that which started out as everybodys worst nightmare is transformed into a catalyst for wonderful changes that would not have been otherwise possible. </p>
<p>I needed to generate them, nurture them, and sustain them. So, my survival instinct kicked into highest gear. And, unabashedly following my previous pattern of a flamboyant disregard for moderation, it went into an overdrive mode, and generated more optimism and positive energy than what the situation called for. In fact, more than what I need to manage my condition. It created a pool of surplus.</p>
<p>These days, I find myself more capable of handling other peoples stress. I spend a few hours each week talking over the phone with my mother. I listen to all her complaints about life, and I metabolize all of it for her and spit back out the balms that soothe her. I am her chief cheerleader. This has always been my role, but I find that these days, I am doing much more of it than I ever did with more sympathy, empathy, and understanding. As a result, I find that I am actually making her happier than ever these days (my mother does not know what I have a long story. Suffices to say, she is a much better dependent than a supporter, and for last 30 years and more, I have been her mother, and she my daughter for all practical purposes). </p>
<p>The same with my husband. In the past, there were times when it was not easy for me to listen to what bothers him. I love him, and what bothers him was at times threatening for me to hear, because it pained me to him distressed. Yet, these days, I find myself capable of listening to all of it with a measure of equinimity, reflecting on it with him and on his behalf. The other day, I told him you should really unload all that bothers you on me. I will metabolize and process it all for you, because I can. </p>
<p>So, even with all the minor catastrophes in the past, I believe my motto will serve me well in the most important test case. I hope my husband finally learns to appreciate my imprudent lack of moderation. </p>
<p>Nothing worth doing should be done in moderation.</p>
<p>Score one for me finally.</p>
<p>(Now that the spring is approaching, I am itching for another gardening experiment. This spring will be a very special one for me, so I should plan for something really interesting. Please share your suggestions )</p>
<p>I identify with your approach to mastering a new subject…gather information from MANY sources via books…so, my suggestion for spring gardening is to consider starting a special garden at your local library. I have been very involved at my local library over the years… and was extremely fortunate to cross paths with a local gentleman…our library’s patriarch. He was very committed to all things library, including the outside spaces. He created several different outdoor areas; 3 different patios, a shade garden, a border garden. Each one is unique and lovely and welcomes each patron, every day, even in winter! </p>
<p>Think of it as feathering the nest that will one day house your book… I believe the only thing in our life we control is our attitude and you excel at that. Share your strength… it will make you even stronger.</p>
<p>sunriseeast, You are a truly exceptional person. I am hoping that I will have a chance someday to read your book. Not only are you a gifted writer (your description of your gardening exploits had me alternately on the edge of my seat and laughing out loud), but you are an original thinker. I am aware of the evolution of cancer terminology from victim language to survivor language to conqueror language. Accepted, even valued, companion is new to me. What a wonderful way to think of it! A suggested title for your book: Cancer, my lifelong companion. Not very poetic or exciting, but maybe it’s a starting point?</p>
<p>And I agree with you that cancer is far from the worst disease to live with (assuming it can be controlled). I know from the experience of very close relatives that autoimmune diseases can be far worse, affecting every organ of the body and destroying quality of life for years before ending it altogether.</p>
<p>I had to laugh at your gardening efforts. You had incomplete data bases, despite the number of sources. Those @#% deer plague us too. Be sure you use moderation now- choosing where to be extreme. Attitude is one of your best weapons against disease. Limiting some things is different than excluding them (such as calories…), likewise exceeding recommended amounts (some vtamins can be toxic). Be sure to run your plans by someone in health care- they may have data you don’t that could make a difference. Sounds like you are moderating your excesses, however. </p>
<p>Must be great to finally feel better than in a long time- being ill can sneak up with gradual less well being so you don’t notice until a certain point. Enjoy the improving weather- spring will get here this month! Silver lining- you went through the rough parts in winter instead of summer.</p>
<p>Sorry folks- it is sunny right now AND above freezing- a rare winter combination here. Have spring on the brain (OP’s fault for mentioning flowers).</p>
<p>wis,</p>
<p>you are right about moderation with supplements and such. This, I am very careful about.</p>
<p>In fact, my policy is to take all the ‘good stuff’ in natural food form, rather than extracts and concentrates. There are way too potent stuff all over the place people are self medicating on, and I am a bit concerned about these: you don’t really what’s in it, and how much you are supposed to take.</p>
<p>Thanks for the reminder that, yes, there is room for moderation :)</p>
<p>lots of oncs dont want their patients to take vitamins and such while in treatment. They think it also optimizes cancer cells. I know if your regime can cause neuropathy it would be good to look into B6 or glutamine as a preventative. But one needs to always ask their docs</p>
<p>I finished 9th weekly chemo infusion out of total 18. Mid point now!</p>
<p>Still no side effects other than hair and blood count tanking (on a weekly schedule, it really can’t be avoided: the body has no time to get the blood count up on its own: I get shots for this). </p>
<p>I am back to my daily 75 minutes aerobic exercise routine plus lots of running around with errands, work, meetings, etc. Sometimes, it’s hard to believe I have a serious, life threatening medical condition. I am feeling sooooooooo goooooooooood. Yes, other than stage 4 cancer, I am a perfectly healthy person.</p>
<p>I lost 4-5 pounds during chemo (not because of nausea, but because I don’t have the very best appetite, and I also cut out all the sugar and animal fat from my diet). I got a whole lecture from the oncology nurse, but still, loosing a few pounds is not bad, even expected. I think they are constantly reminding me of this weight issue since I started right on the borderline of normal and underweight on the BMI scale to begin with. </p>
<p>I read articles on chronic fatigue as a major side effect that people don’t recover from even long after the chemo regimen is over (some say, it took several years for them to get their full energy level back). I feel pretty sheepish that I am back to a full cardio exercise routine while on chemo… I feel so profoundly fortunate.</p>
<p>Next week, I get scanned to see how my tumors are doing. I hope they are not doing as well as I am :)</p>
<p>You guys on this board have been tremendously supportive. Though I don’t know you in person, and though I can’t always thank you individually, please know that I am immensely grateful for your kindness and generosity. This all counts toward my recovery: mind over body.</p>
<p>(PS: some of you asked me through PM how the job interview situation is going. It’s going well. I think they really want me. I am dragging my feet to lengthen the “foreplay” (sorry for the risque expression) so that by the time the offer is accepted, I have only 4-6 weeks to my chemo finish line - telling them that the start day is 4-6 weeks away is well within the normal range).</p>
<p>Great update sunriseeast- you are an inspiration, thank you.</p>
<p>Sunrise,
I am visualizing your tumors as cowardly little raisins that have been chastised into submission. I know that you are okay with having cancer as a companion but there is nothing wrong with letting it know who’s in charge :)</p>
<p>When my husband had cancer I visualized little Pac-men throughout his body, gobbling up any cancer cells as they appeared!</p>
<p>Thinking of you Sunrise and hoping week 10 went ok</p>
<p>as am I.
~mafool</p>
<p>me too…</p>
<p>thanks for checking on me…</p>
<p>I am still doing very well. Now officially more than half way through the chemo treatment. Still no side effects - other than hair and the white blood count. I am fully back to my regular aerobic schedule (75 minutes a day, without missing a single day now) and doing everything I used to do with no break. Given the intense weekly chemo schedule, I think this is a tiny, minor, miracle.</p>
<p>I got a CT scan done last Thursday (it’s a mid treatment status check), and am anxious about the results. I hope my tumors are not doing as well as I am 
I have a reason to believe the scan results will show a good progress, but to be perfectly honest, I am a little nervous. </p>
<p>My doctor’s appointment is this coming Tuesday. The results of the scan were already ready by Friday afternoon, and I wanted to have a copy so that I have a chance to “study” it before I sit down with my doctor.</p>
<p>Amazing thing is, the imaging center will NOT release it to me until they get an OK from my doctor. I am flabbergasted. It’s my property. I will have to fight with them on Monday, because I do want to have a chance to go over it: I have a friend who is an OB/GYN and she offered to go over this with me. My doctor is an outstanding doctor, but communicative, he is not, and I have to coax detailed information from him, and in order to do that, I need to familiarize myself with the scan results. </p>
<p>As I am going through this whole thing, I am starting to see how the entire medical industry more or less treats the patients as passive passengers, rather than a driver or at least co navigator. I am also learning how important it is to advocate for oneself. It’s a long story, but suffice to say, if I had not been monitoring and tracking my white blood count like a hawk (I even have an excel spread sheet graph on this), I would have missed a couple of chemo sessions since the doctor’s office and the hospital did not notice the trend of the way my body reacts to the plunging white blood count issue. (I did, and I anticipated when the count would plunge and when an intervention is needed - I had to alert them and request that I get the preventive shots when they did not yet think it would be necessary). </p>
<p>One of the key factors affecting the prognosis chemo treatment is over is whether the patient was able to finish the whole program without any missed or delayed sessions. So, the fact that I already rescued “two sessions” because of self advocacy is a significant factor in engineering my own prognosis. On the forum I visit to gather information, I hear women talking frequently about their missed chemo session due to side effects (most likely the white blood count issue). As macabre as it may sound, every time I read yet one more post like this, I secretly up my odds for long term survival way beyond the published stats. If the majority of women don’t advocate for themselves, and they are all part of the population data that generated the survival statistics I see, that statistics don’t apply to me. Besides, someone has to over compensate for those who end up getting sub optimal results due to the lack of informed self advocacy to maintain the statistics. I intend to be the one on the extreme right side of the curve who compensates for all those falling on the left side of the “median” on the curve.</p>
<p>This past week was a conference week in FL among gynecologic oncologists. I got hold of the PDF file of the ALL the abstracts of the research/trials talks and presentations (close to 200 of them). Looks like a lot of interesting research is going on, though it will be quite some years before some of these results can be deployed as part of the treatment modality. This further convinces me that what may look “incurable” by the current standard may well be a treatable condition in the future. I just need to hang around long enough to benefit from these.</p>
<p>I know my doctor went to this conference. I hope he attended every single session. I have a vested interested to make sure that this man stays on top of the all the latest developments. I hope he did not play hooky, playing golf and what knot. I have to say, for all the professional conferences I have been to, there are times when I did play hooky for a half day or so. Let’s hope that he is a more conscientious professional that I am :)</p>