<p>Every single LTS (long term survivor) disproves that sunset comment.</p>
<p>Think of it simply as a recognition of the difficulty of the battle… but it IS a winnable battle!</p>
<p>lts–That oncologist has to be wrong. Every day researchers are finding out more about the effects of mind on the body and its various systems. How we handle stress, for instance, affects the endocrine system, which in turn affects our other organs.</p>
<p>And probably 30 years ago I read an amusing essay by Lewis Thomas on how people can “wish” away warts. Now warts are a lot lower on the scale of terrors than cancer but still…the mind-body connection is a force to be reckoned with.</p>
<p>So phooey on him. :raspberry:</p>
<p>
LTS, I’ve been hesitant for the most part to contribute here given my vocation as a hospice chaplain… the last thing I want is for it to appear as if the grim reaper has joined a CC discussion. However, I do have some insights that I think are important at this point.</p>
<p>My own dad died of sclc in 2001 at age 82. He lived 3 ½ months after his initial diagnosis, after having had a clean chest x-ray eight weeks prior to diagnosis. His diagnosis was made after he already had mets to the brain, which were causing painful seizures in his hand. He was treated at M.D. Anderson, which I’m sure you’re aware of, is one of the top cancer treatment institutions in the world. He chose stereotactic radiation (I think that’s the term) to address the tumor, and had a successful outcome from it. </p>
<p>Due to my mom’s own chronic health issues and inability to care for him 24/7, they had caregivers in the home 24 hours a day toward the end. Also, for the last week or so, my mom’s sister (a retired ICU nurse) was there. I was there the last 2 ½ days. About a week before he died, he became more weak, and lost interest in food (we knew something was up when he declined James Coney Island hot dogs). When I arrived, he was sleeping more, he was not on oxygen (nor did he need it), nor was he having any pain. About a day and a half before he died, he experienced some restlessness that was easily taken care of with oxygen and morphine. The day before he died, he was still getting up (with help) to go to the bathroom, but it was exhausting. He died very peacefully.</p>
<p>While I’m sure the oncologist you’re referring to is highly respected in his field, there are several red flags raised as I read your comments that you must take into consideration. I’d question how many deaths he’s been present at; as hospice staff, we’ve been present at many. I’m sure he is a great advocate for those who wish to fight their cancer to the end, but once someone decides to come onto hospice, the oncologists tend to not be as involved. All orders (and changes in orders) for medications (even OTC) and medical equipment must come through the primary care physician via a phone call by one of the hospice nurses. So the primary care physician is the one who is more aware of comfort level based on the phone calls they may or may not be getting from the hospice nurse. Only once do I remember being present with particularly difficult to manage symptoms which required our hospice nurse to offer continuous care in the home until the symptoms were under control (although I’m sure it happens more often, but I’ve only been present at one with our agency). On hospice, people are not left to die gruesome, painful deaths. That being said, what we do tend to run across from time to time, is the occasional senior citizen who insists they will become ‘addicted’ to the medications ordered by their physician, and becomes non-compliant. That’s an education piece we have to deal with then, with the patient and family.</p>
<p>What I suspect the noted oncologist might be alluding to is his experience in managing treatment of younger people. Generally, senior citizens (like my dad) have lived long, full, complete lives, and do not take their prognosis as harshly as younger people. Many of their family and friends have already died, their adult children are standing on their own two feet, and they are ready to put their lives to closure. They decline any aggressive treatment or cure (well, there was my 99-year old grandmother who had major surgery twice by her own choice and thrived, but that’s another story) meaning the only goal is comfort. I’d say it’s achieved 98% of the time when someone is on hospice.</p>
<p>Where things become sticky is when younger people, still in the midst of their careers with adult children who may not quite be on their own two feet yet (financially and/or psychologically), who are looking forward to weddings and grandchildren (and great grandchildren if they’re lucky) and other life milestones, choose to fight the cancer aggressively. And aggressive treatments often have debilitating side effects. But younger people are more willing to withstand the treatments because they have what feels like is an unfinished life here on earth that they wish to complete. Younger people rarely give up without a fight (and that fight is defined differently by each person). They continue treatments that older people would not consider, and therefore are more likely than older people to experience distress with these prolonged and aggressive treatments. I suspect the oncologist you referred to sees more people who want to fight for as long as possible. At some point, people either enter into remission, are cured, or find the fight is too exhausting and choose hospice care. The point at which that decision is made is entirely individual, contingent on many, many variables. No one answer is right for everyone. Often when young people enter hospice, it’s because the treatment has become too unbearable and/or co-morbidities have arisen from that treatment that in and of themselves, are fatal. So the aggressive oncologist sees patients who are willing to endure everything under the sun, but for whom treatment may cause some ugly side effects. Often, younger people, even after they are totally spent and exhausted from aggressive and even experimental treatment, feel they can’t give up because of responsibilities and obligations in their lives. And their family can continue to pressure them to try more and more treatments that, in the end, cause more pain than is reasonable, because they want them around for selfish reasons. These are the circumstances under which I can see an oncologist defining death as gruesome, drawn-out, ugly, etc. Those kinds of deaths almost always involve some sort of conflict that has not been resolved. The key, I’ve seen, with younger people who are stricken with a fatal diagnosis, is that they find their own voice to articulate exactly what they want and communicate that to their doctor. You may choose to fight this disease way beyond what someone in the next room chooses to do, but both of your wishes should be honored. It’s when someone’s voice isn’t honored, that difficulties arise, and things can get ugly. What I’m trying to point out is, when someone is at peace with their own mortality (doesn’t mean you can’t be angry), and can articulate (or have someone articulate for you) their wishes and feel heard, then they’re more likely to not fight the end when it comes. This opens up the doors for an experience that doesn’t have to include strife and hardship. I suspect this oncologist tends to see more younger people who cannot give up the fight (for obvious reasons) and are therefore more likely to not die peacefully. It is a much more conflictual decision to make (to give up curative treatment) for younger people than older people, but it’s not a hard and fast rule, and there are exceptions. So take what the oncologist said with a grain of salt and in the context that he sees patients. If he’s been treating someone for a year, very aggressively, and they’ve had unmanageable side effects, and they finally decide this isn’t how they want to spend their remaining time, and they die weeks later, he will view it as a gruesome death. It’s the treatment that’s bad, not necessarily the death once someone (and their family) has come to terms with it.</p>
<p>Hope this sheds some new light on his observations.</p>
<p>^^^what a posting, with a wealth of experience and heart behind it. Thanks, Teriwtt, and I hope it helps LTS to consider your perspectives. It might unring a bell.</p>
<p>teri…what a thoughtfully written post…spoken from experience!</p>
<p>LTS…one problem with the internet, I find, is that we can get more upset the more we read and come across things that worry us. I have never been in your shoes but I have had moments when I would read this or that and it would make me more nervous about what “could” happen. Anyway, while I wish you had not read that, I hope you can try to remind yourself that we are ALL individuals and others’ experiences are not going to mirror our own. There simply is no generalization to be made about that stuff. </p>
<p>Four and a half years ago, my dad died of lung cancer, having been a very healthy person prior to his diagnosis. He lived five months. My dad was never in the hospital. He was never confined to a bed. He was eventually on oxygen. He was only confined to a bed on his very last day (I was there). And even then, I think it had something to do with that the night before, he had gotten up during the night in the dark to use the bathroom and he was more fragile due to the illness and he slipped on the floor and fell and I got up and ran to him and he had hit his head in the foyer on a huge ceramic vase thing they have in their home there. He was conscious but started talking more deliriously and not making sense much. I got my brother to come over and got him back into bed. He never was fully conscious the next day. We had hospice for one day but again, he was only confined to a bed for one day and I would say died peacefully as hospice helps with that so that the patient feels no pain. While he wasn’t out running around in his last month, he was up and doing things in his home. While it was no cakewalk, I would not call it a painful death. I feel he died peacefully and luckily didn’t suffer greatly at the end or wasn’t bedridden, etc. He was weak and all but not unable to do things. </p>
<p>This is not really something to be thinking about but since you brought up that doctor’s description, I just want to say that just as many people have that not happen too. You are you and not like anyone else. Live each day to its fullest. I understand the fears of the unknown but try to enjoy what you do have and take it a day at a time. You are doing SO well and I admire you greatly.</p>
<p>teriwtt and soozie’s posts are wonderful personal examples of how a person chooses to die. LTS- you are an individual who clearly takes the bull by the horn. I think if that issue ever must be faced, and hopefully it is in 80 years, you will choose what is best/right for you.</p>
<p>LTS, speaking as a scientist and engineer, statistics say this guy’s gotta be wrong some of the time, and you’re sure as heck doing a good job of proving this dude wrong so far. Fact is, NOT EVERYONE dies of this… so what’s this goofiness that this doctor’s spouting? Who <em>does</em> survive, if not the strong, otherwise-healthy fighters? I seriously doubt it’s the ones who roll over and say, “Welp, this’s been fun!” I’m casting my vote with those who think this doc’s being a pessimistic dweeb. My dad’s a nuclear medicine radiologist and while he obviously believes in the power of medical healing and that having the best doctors and the latest treatments will result in great prognoses, he said that the main thing that medical school taught him was to stay away from doctors… I’m pretty sure this is the guy my dad’s been telling me about.</p>
<p>I’d just keep on doing what you’re doing, since you’re doing an awesome job so far. I think it just goes to show you that maybe Ivy educations ain’t all they’re cracked up to be. ;)</p>
<p>teriwtt: Thank you for such a thoughtful post. It benefits us all.</p>
<p>LTS: None of us know what the next day will bring, and it’s our misfortune or good luck as a species to know we will die. This colors our lives as human beings. But you may well live longer than I with no cancer diagnosis today.</p>
<p>Each day you do your work, visit with your friends, look at cherry blossoms is an eternity of life, filled and luminous. The future is unknown, but your present is an inspiration.</p>
<p>Keep living in the present. Keep living.</p>
<p>All my love.</p>
<p>“As background, by the numbers, I am only supposed to live a few more weeks. The median survival with treatment is 8-11 months; I am at nearly 7 months”</p>
<p>LTS, that is not what the numbers say. A median is just the middle. </p>
<p>There are people living a lot longer than 11 months.</p>
<p>You will.</p>
<p>I am another hospice employee and I can back up Teriwtt’s above post. We see people of all ages and 98% of our folks regardless of age have a comfortable, peaceful death. A younger stronger heart and well nourished body can last longer than a senior citizen with multiple co-morbidities without food and water but there are wonderful medications to bring comfort at the end without knocking one out.</p>
<p>There are different types of pain–physical, spiritual, psychological, emotional, financial and as the above noted the younger folks who still have goals to accomplish may have heightened pain in the non physical realms. It is definitely sad to die before we are ready to go and we encourage people to avail themselves of our social workers and chaplains and talk about the spiritual distress and grieving process but please know that most all people no matter the age do not die a gruesome death. Studies also show that people live on average a month longer when they have hospice care.</p>
<p>There is an interesting book called “Chasing Daylight” by Eugene O’Kelly and the author writes about his journey after being diagnosed with brain cancer. He wants to stay alert to the end and tell everyone what death is like. The first part I felt was a bit too much “I am a CEO and rich and smart etc etc” but the very end where he describes his experiences a few days before his death and the final chapter that his wife writes about his last days is interesting and I think you would find it calming and informative.</p>
<p>When you feel the anxiety creep in from reading such a troubling article please remember that the whole cyber world is holding you in our hearts.</p>
<p>Teriwtt, that sounds absolutely gruesome. Ugh. By that logic, there is absolutely no point wasting energy having a positive attitude, keeping oneself in shape, fighting the disease, etc. The outcome is inevitable because cancer is going to do what cancer is going to do, seems to be his attitude. But the explanation makes some sense, I suppose.</p>
<p>Adding my small voice to the many wiser ones above:</p>
<p>It seems to me that I have read on this very thread where several docs have told you very pointedly that your excellent physical condition and the fact that you are, aside from the stupid cancer, very, very healthy and a fighter are all factors working very solidly in your favor. Hang on to those voices. They sound true to me…</p>
<p>Dear LTS, onocologists are people too, and sometimes they get down. That said, for median to be 8 to 11 months, someone has to be the outlier on the long side, I’m thinking that easily could be you.</p>
<p>My dealings with hospice were not the “we’ll do anything to make you comfortable” experience touted by the brochures. Keep in touch with your doctors, our onocologist did ensure he was comfortable, especially when the hospice doctor didn’t want to be bothered and the nurses swore there was nothing they could do. (She kept on the hospice people, including driving to our home from the hospital to show the visiting hospice nurse why what they were saying didn’t jive with what was happening.) I did pay for over night home care, that the hospice would not provide and the insurance wouldn’t cover. Keep track of all your doctor friends, they can up meds when the hospice agency is too busy to call back. I wish I could say my experience was unique, but my mother’s experience with hospice this year with her elderly mother was similarly frustrating. And yet, the hospice provider/supervisors were shocked to hear how unhappy the caregivers were. They absolutely thought they were providing good service.</p>
<p>As for "Where things become sticky is when younger people, still in the midst of their careers with adult children who may not quite be on their own two feet yet (financially and/or psychologically), who are looking forward to weddings and grandchildren (and great grandchildren if they’re lucky) and other life milestones, choose to fight the cancer aggressively. " My husband wasn’t waiting for his adult children to get married, he was hoping to raise our minor children. Sorry that seemed to make it “sticky”.</p>
<p>LTS, that’s the first time I’ve seen you display a weakness. Apparently your mathematical understanding of the importance of the shape of the graph is weak! If the median survival is 8 to 11 months, that means that half survive less than that and half survive more.</p>
<p>But that’s only PART of the meaning of the data, and I don’t know where to find the rest of the information. Is it a long-tail curve? How long has the longest survivor lived? My guess is that you’d find the right-hand side of the graph (and these graphs are hard to find, perhaps epistrophy can find it for your cancer) extends out many many years–the long tail. It’s almost a sure bet it’s NOT a bell curve; much more likely that there’s a long slow descent to zero on the right hand side.</p>
<p>I am in constant awe of the eloquence of this group.</p>
<p>Keeping you all and you, latetoschool, in my prayers.</p>
<p>
</p>
<p>Oh my gosh, that’s right…! LTS, this isn’t an egg timer about to run out, this is you about to take the lead and make it to the right-hand side of that graph, where all the survivors are parked…!</p>
<p>UCDAlum82-- I am very sorry that you have had bad experiences with hospice. We do followup questionaires with folks to assess their satisfaction and we do get complaints but thankfully most folks are happy with hospice care.</p>
<p>It’s hard to leave this world with minor children still to raise and I my prayers are with you.</p>
<p>UCDAlum, </p>
<p>I think what was meant by “sticky” was that it can be a harder death, if instead of palliative care, one endures more punishing treatments to prolong life. It’s was not a judgement on anyone’s desire to do so.</p>
<p>
</p>
<p>This oncologist may be addressing those cancer patients who are told that their mental attitude will be the most important determinant of their survival and who subsequently feel guilty and inadequate when they succumb to bleak moods, days of lying in bed, or progression of their disease. He relieves them of some of that guilt by saying that mind-body connections are not everything, and that if their disease worsens, it’s not due to a failure of will.</p>
<p>You have an amazing fighting attitude as well as radiation and chemo and support. Enjoy the gym and the cherry blossoms.</p>
<p>LTS, I urge you to ignore the median figures mentioned above… perhaps you have already seen this study, but it seems from this data below that you have a much higher mathematical probability of outliving the median figures you cited and of achieving complete remission. Much higher because you are a woman, in excellent health and young:</p>
<p>[Analysis</a> of prognostic factors in 766 patients wit…[Br J Cancer. 1991] - PubMed Result](<a href=“http://www.ncbi.nlm.nih.gov/sites/entrez?db=medline&cmd=Retrieve&dopt=Citation&list_uids=1648949]Analysis”>http://www.ncbi.nlm.nih.gov/sites/entrez?db=medline&cmd=Retrieve&dopt=Citation&list_uids=1648949)</p>
<p>
</p>
<p>Bottom line: 32% of the younger females achieved a 3-year survival rate. There is no doubt in my mind that you are even more fit, tough, smart and aware than those German patients, so clearly you will be at the high end of the 32%. Your past success (in career, parenting, fitness, health) is a predictor that cannot be ignored (along with your access to the top medical care in the world).</p>
<p>Just noticed the study was published in 1991; with the more aggressive diagnostics and treatments available today, the figures might even be higher.</p>