<p>sunriseeast-spreading the vigil to your DH’s sister with hopes that she comes through the surgery with flying colors. Please let us know how you both are doing.</p>
<p>sunrise, you, your SIL, and your DH are in my prayers.</p>
<p>sunrise - I will keep your SIL, H, and you in my thoughts. Sending strong healing wishes for all of you.</p>
<p>Prayers for the lot of you!</p>
<p>So, my sister in law is out of surgery. She is so petite they had to cut the donor lungs to her size. I did not know it could be done!!! The surgery was a success - so far so good.</p>
<p>She is in an isolation chamber and people can only see her through the glass. Not sure how long she is going to stay at the hospital. </p>
<p>(another drama: she got a call from her doctor to show up at the hospital for a transplant surgery, and when she got there, she was told to wait for a few more hours because the donor was not quite dead yet !!! A friend of mine who is a doctor told me that they would never do it that way in USA. Maybe they have a different way in Austria. It must have been so unnerving for her to wait for this donor to die!)</p>
<p>thanks everybody for your good will.</p>
<p>Your poor husband. What a situation. </p>
<p>It is always deeply distressing to realize that someone has to die in order for a donor organ to be made available. My thoughts are with you family and with that of the donor. I hope it is of some comfort to them to know that their loved one gave the gift of life to another person.</p>
<p>Thank goodness the surgery was a success. May she make a full recovery. The donor’s family is in my prayers.</p>
<p>Glad everything went well. I wonder if it was necessary to tell her that the donor wasn’t dead yet. TMI if you ask me.</p>
<p>I’m glad to hear that the surgery went well. I’ll keep your husband, SIL and you in my thoughts. Hoping for happy and healthy days ahead for all of you.</p>
<p>One side effect of chemo that I could not escape from is the tanking blood count, especially the white blood cell count. These days, I get three daily shots of Neupogen to keep my white blood count up so that I can stick to the weekly chemo schedule. Plus a weekly blood work, and the main event – the chemo itself. I have developed an intimate relationship with health care facilities in my area. </p>
<p>Couple of days ago, I was driving from the lab where I go for a weekly blood draw to the hospital where I get my shots. For no particular reason, I just started cry, and I cried all the way – all forty minutes of driving. Last time I cried like this was the evening I picked my husband up at the train stations 3 ½ months ago when I broke the news that it looked like I would be dealing with stage 4 cancer based on the biopsy results. </p>
<p>It would be tempting to pin this on a gloomy March weather with an unseasonable snow shower, or the fact that I have had bad cold last few days which left me with very low energy, or a resulting total lack of appetite that left my body undernourished, or the surgical incision spot that has been painful on and off last several days (I have this checked: nothing wrong, just normal part of long term healing), or a myriad of other usual suspects. Well, one thing I can’t blame is the hormones – the all purpose female excuse. All the female parts have been taken out, so nothing left to manufacture such a convenient cover……</p>
<p>Yet, I know that the reason is elsewhere. I think I know what it is. I have preached to everybody who cared a whit about me that we need to handle my cancer and recovery process as a marathon. No heroic measures that will burn people up for a short, brilliant spark. I have felt so smug about being a wise ecosystem manager for sustainable resource management for a long haul.</p>
<p>Yet, amid all this preaching and pontification, one thing I neglected to manage for long term sustainability was expectations I put on myself – my body’s ability to face the worst challenge and come on top of everything and my mind’s ability to let me be the heroic one who lifts and inspires everybody without needing nurturing and comforting. The fear of being needy and being the dark cloud hanging over everybody’s head that sucks all the joy and energy out of the room is so great I could not, and did not allow myself a “down time” necessary to manage my resources for long term, sustainable harvesting. </p>
<p>It started on a day a week and a half ago when I had a mid chemo consultation with Dr. S. CT scan results were back. The blood results were back. The scan taken at the time of initial diagnosis (Dec 3) showed a 4.3 x 3.5 cm tumor (the largest) along with too many to count small cancer nodules spread all over the abdominal and pelvic area. The surgery could not take out this big tumor among other much smaller ones. The latest scan showed that this tumor did not shrink much, while all other cancer nodules seem to have mostly disappeared. Meanwhile, no new progression is seen anywhere. </p>
<p>Dr. S. considered this to be an evidence of quite an encouraging progress together with the blood work that showed my cancer marker at an almost normal range, and was quick to point out that what showed on the scan often lags behind the real clinical improvement of the patient. He also suggested a possibility that the tumor at this point may not consist of solid, live cancer cells as it is possible that some of it may be a scar tissue or fibroid. Furthermore, given how aggressively my cancer progressed in a short time period, it’s a safe bet that the tumor actually grew between Dec 3 when the last scan was taken and Jan 7 when my chemo started. So, it is highly likely that the tumor shown on the latest scan is actually a SHRUNKEN tumor compared with what it was before chemo started. </p>
<p>Later, a good friend of mine who is a physician also told me that indeed the progress I have made is an excellent one and she never expected the large tumor to shrink drastically half way through chemo anyway. Her own words: if one of my patients made a progress you are making, I would be thrilled. She is not the type to pump you up with sugary words she does not really mean, so I have to take her words at a face value.</p>
<p>Even so, I was bitterly disappointed. I felt like little Suzy who did everything she could do for a school project and expected a smiley stamp and 10 gold star stickers from the teacher, but instead only got “Good progress. Keep up the good work” . I felt like shouting:</p>
<p>“Don’t you see how I have been “the” perfect patient? Nobody sailed through the harsh, weekly chemo regimen like I have. Several integrative oncology management books told me to eat 12+ servings of fruits and vegetables. I did that and more. They told me to exercise 30 minutes a day, so I did 75 minutes every day. They said keep up the positive outlook, so I mustered enough positive energy to turn all the electrons in the universe into protons! What else do you want me to do?”</p>
<p>Somehow, I set my expectations so high I thought I would see the tumors almost gone and I am almost in remission already. But, there is also an element of fear. If you were a smoker and a couch potato with a terrible eating habit, you can say, OK, I will stop all this and get better. If you are doing everything humanely possible already, and if it still does not improve, where else would you turn? What else can you do to affect the outcome? There is no more arrow left in your quiver, and the enemy is charging forward. This is a scary scenario. </p>
<p>I am afraid of this helplessness. And, I did not share this fear with anyone. Every time I was fearful, I dug deeper into the well to find another fix of fearless optimism. And, finally the well dried up. So much for sustainable resource management! Whatever I preached to others, I did not practice myself. </p>
<p>So, what do I do? The usual pop psychology answer would be to share my sense of vulnerability more and let other people nurture me. Yes, it would be a good answer, wouldn’t it? Yet, this is one of those things – you know the answer, but you are constitutionally incapable of fully implementing it. Presenting myself to the world as this needy, poor thing that needs everybody’s pity is so antithetical to who I am, I simply cannot bring myself to do it. Whatever the doctor prescribes has to be tolerated by the patient, so forcing myself into this direction is not an answer, since it will trigger a gigantic allergic reaction.</p>
<p>Perhaps the answer is where it all began – me, myself. </p>
<p>When I left my home country and my privileged but suffocatingly cloistered life some thirty years ago with two big suitcases and not a soul I knew in this country, I learned that I was capable of making big, bold moves. </p>
<p>Several years into my marriage, having learned how much power I had over my husband, and not having ever abused or exploited that power, I learned that I was worthy of his unquestioning trust in me. </p>
<p>When I worked in a company with culture and value completely antithetical to mine, and I kept my value and beliefs intact even though doing so caused a great deal of aggravation and caused me to lose all the benefits and privileges that could have been mine if I had only agreed to go with the flow, I learned that I had integrity. </p>
<p>And, during last few months, I learned that my mind is capable of finding beauty and hope in most unlikely places. </p>
<p>So, this is the answer. I need to look into myself, and find a balance that will let me regenerate myself. I need to first loosen the iron grip of high expectation I put on myself. As I pontificated to others, this is a marathon, not a sprint. I should not sign my body up for an impossible challenge - a sudden and miraculous recovery and instant and permanent remission. No matter how good I am feeling and how well I am doing, I have just finished only first few hundred meters, if that much, of the race. There is a long road ahead, and there will be bumps and falls. I may even have to take a break here and there. I need to remind myself over and over again it is OK to stumble now and then. The goal is to keep up the race one way or the other. And, perhaps, I will get to actually finish the race somehow. </p>
<p>That, for me, would be to live long enough to see children of Dan and Jon growing up, and play this role of an obnoxious grandmother who would take them to boring museums all over the world, and drag them to all the hidden corners of this world through the unbeaten track. Better yet, perhaps I will even attend their wedding and more. </p>
<p>I am not afraid of death. I believe death is easy on the dying. Every night, we go to bed and blissfully surrender ourselves to the void, the nothingness. It’s only because we wake up that we are aware of our being. If we did not wake up, how would we know anything different? I believe death is like that. I believe the burden death is on the living. I do not wish to burden those I love dearly with my untimely death. More than anything, I must keep my promise to my husband – that is, I will be there when his time comes, holding his hands and comforting him. This is the only promise I made him, and I intend to keep it. </p>
<p>If one were to go by the published statistics (which is very poorly compiled, dated statistics with a very weird population sample, and which I don’t think apply to me, but still……), doing all this will require a miracle – the 5 year survival odds for my condition peters out at a long single digit. They do not even bother to compile statistics beyond that. So, how should I go about obtaining this “miracle”? Certainly not by turning religious out of a utilitarian purpose. I have taught my kids it’s a very poor form of conducting oneself to reach out to friends and acquaintances you ignored for a long time only when you need something from them. In truth, I have a mild disdain for people who suddenly find religion when they need something. I am embarrassed for them in their brazen attempt to turn God into their personal errand boy/girl – fetch this and solve that, give this to me, and cure that disease. If I ever become religious, it would be when I realize the profound meaning of universal moral clarity that is embodied in his/her divinity. </p>
<p>Maybe, I should audition for this miracle. I am reminded of a documentary about young actors and actresses who were going through multiple rounds of a grueling auditioning process that stretched over a year to get a part in a Broadway revival production of A Chorus Line. Their whole being, whole life hung in balance while they pushed their body and mind through the limit on a daily basis with every round coming with a fresh possibility for a rejection. Many of these would-be Broadway stars had a history of trying out for different productions, each with a grueling schedule and its own share of disappointments and excitements. How many times did they stumble in the past before they finally succeeded in getting a part in a Broadway show? Perhaps this is not that different for Olympic athletes. How many years of grueling work day in day out did it take, how many losses did they have to learn from, and how many injuries they had to recover from before they had a taste of that single moment of shattering glory? </p>
<p>I would like to believe that my stake is much greater than a part in a show or a medal. And, I should not expect any easier auditioning process than theirs. I must give my best every day, but learn not to expect to be rewarded for it every time. I may lose one bit part, but I must audition again for the next one. I may lose in one track meet, but I must train for the next competition. I must accept the loneliness of that struggle – because no matter how much support and nurturing I get, in the end, it is a solitary endeavor to reach that perfection that is good enough to win my miracle. </p>
<p>Auditioning for a miracle and winning it – it is a big goal and a long term project. Each day, I have to take small actionable steps that will get me a bit closer. This week, I must “cure” the blues that got hold of me. Since my diagnosis, I made a point of doing something useful for others whenever I feel down so that I can remind myself that out of all this, something good came. I want to be the oyster that creates a beautiful pearl by secreting the nacre that surrounds the irritant (a grain of sand). </p>
<p>I wrote a long thesis on “how to interpret statistics” for the women on the ovarian/UPSC cancer Internet forum. Several of them are avid researchers but I realized that most of them lacked sufficient knowledge of statistics to interpret the study results they were reading. This is my contribution for collective knowledge of this community. I also ordered another copy of the book “Life Over Cancer” – the best book on Integrative Oncology that considers the whole person and whole body as a target, not just the tumors. I intend to donate this book to the oncology wing at the hospital where I get my chemo treatment. Perhaps this will help some other patients and also give an interesting insight to the medical staff there.</p>
<p>So, tomorrow will be another day, and I will be eating my 12+ servings of cancer fighting fruits and vegetables, and exercising 75 minutes. And hopefully, I will shake off the blues. If not, I shall not dig through the bottom of the well in search of another quick fix of optimism. Rather, I intend to let it recover on its own, and allow myself to be gloomy for a couple of more days. I should walk the talk: renewable resource management for long term sustainability.</p>
<p>Sunriseast,
Congratulations on how far you have already come and maintained your equilibrium. You have much to live and work for. My thoughts are with you as you face your challenges. I and many others have personal health challenges. </p>
<p>In my case, there are no statistics because no one really understands why my health is as poor as it is so no one has a good understanding of what the “normal course” is. I have already defied early predictions and also hope to continue to thrive and be here for my kids, husband, sibblings and parents. I do what I can and try to help others but never know quite what the future may bring. We hope I can stay healthy enough, long enough so they can develop better treatments than the few they have today (all of which help with symptoms but none get at the root cause to stop or reverse it).</p>
<p>I admire your strength and determination to give it your all–how can we do less and leave so much on the table when so much is at stake anyway?</p>
<p>Hang in there–be kind to yourself! You are doing a great job and an inspiration to many who know you, including your family and other loved ones!</p>
<p>HImom</p>
<p>I’ll clap for you at your audition, sunriseeast. You are an amazing writer and you will continue to be in my thoughts.</p>
<p>sunrise - I have admired your strength and approach in how you are dealing with your cancer since your first post back in December. You truly are an amazing person. I have learned so much from you. I agree with you that the battle is yours, but also believe it doesn’t show weakness to accept support from others. It is likely that many great actors and athletes had great coaches and support along the way. </p>
<p>I’m going to retell a story I told a while ago on a different thread. It is a story that was included in an article I read shortly after my mom died 22 years ago. I don’t even remember where I found the article, or if it is even true, but I remember this story touched me.</p>
<p>A mom was waiting for her son who was late coming home from school. He wasn’t one who was usually late, so she was concerned. When he finally arrived, she asked him why he was late. He told her he had stopped to help a young boy whose bike was broken. The mom said to her son “I didn’t know you knew how to fix a bike”. The boy answered “I don’t, I just sat on the curb and cried with him”.</p>
<p>Sunrise, You continue to be an inspiration to everyone who reads your words. You must have someone publish them. You are such a role mode,a brilliant and courageous woman. We are all rooting for you.</p>
<p>Sunriseeast-your honesty…your clarity…your courage …truly exceptional.</p>
<p>One of my wife’s best friends was diagosed with terminal cancer 20 years ago. </p>
<p>Well…she is still here…</p>
<p>She is looking good and feeling good too…</p>
<p>sunriseeast, Once again, your words are moving and inspiring. I do hope that you will publish something. I am wondering whether the crying spell left you feeling better? I know that some people believe that a short period of crying occasionally while going through an ordeal can be helpful.</p>
<p>In terms of your CT scan, as your doctor said, the CT scan only shows that there is a mass there. It shows anatomy, not function. That mass may be composed of scar tissue and necrosis. Even if it does contain active tumor, it may be operable now that the multiple small tumors are gone. It does sound as if you are doing extremely well.</p>
<p>BUandBC82, that is the loveliest story I’ve ever heard!</p>
<p>I had the same thought. A friend had a sarcoma with mets to her abdomen. They did surgery and were pleased to find the tumors were dead.
The cancer journey is a difficult one and hard for many people to understand. you give life to thoughts and feelings that cannot always be expressed. when you write i find myself nodding yes, yes, yes, can I email this to my boss? However it is the same place that Ihavehad to fight to maintain my integrity at significant cost.
Perhaps the crying was the withdrawl of hormones, an inbalance of sorts. Perhaps it was a stress release. I find myself often embarrassed by my tears, but why do I have to feel so weak? Cancer is no joke, it is daunting, and scary and the fact that we are walking and talking, surviving and thriving is amazing some days. (this is also true of other serious illnesses too)</p>
<p>Sunrise- I love the way you embrace humanity, including your own, in all its facets. Serious illness without tears- I have never seen it and I am not sure I would want to do so. There are things to be grieved when life is full of medical procedures, things not quite right, etc. It can be fortifying to acknowledge the poignancy of the situation. Also, somewhere between keeping it all inside with a brave front and falling apart or burdening “everybody” is a warm safe place of those closest to you, where sharing the fear or need is not only okay, but a gift to those who love you and would value the privilege of walking this journey with you. As a person who often found myself in the helper role as opposed to the “helpee” role, I learned much about letting others in when faced with challenges. That is the real stuff of life, when you have people who “get it” and can be there with you in whatever way makes sense. Your words leave me awestruck.</p>
<p>Sunrise–I enjoy reading your words and appreciate your clarity of expression and insight.</p>
<p>Remember that everyone has “down” days–even if they’re not engaged in a worrisome and wearying treatment process! Sometimes it really is the weather, or hormones, or a lack of good sleep.</p>
<p>Tomorrow is another day! :)</p>