<p>
She’s where she needs to be and wants to be. If you live to be 100, she’ll still know she unselfishly spent this trying time with you & she’ll have no regrets. She’ll have “done the right thing,” and will pass on that important value system to her kids. She is a credit to you & you should be very proud.</p>
<p>LTS, your beautiful daughter wants to be with her beautiful mother during this important time. You are at the top of her list of priorities. Don’t waste energy fighting it, just accept it. </p>
<p>Very interesting about the change in food choices - the wisdom of the body is astounding.</p>
<p>I’ll toss out a random recommendation just in case you find it useful: omegabrite.com fish oil capsules. I started taking them on general principles months ago and, to my surprise, they cured a shoulder problem (pain, stiffness, severely restricted range of motion) of 10 months’ standing. The shoulder is now 99.99% normal. The capsules are supposed to reduce inflammation, and I think that must be the mechanism that cured my (minor) problem.</p>
<p>LTS, </p>
<p>Although it is unlikely that you are going to talk your daughter out of being there for and with you, any parent can instantly empathize with your desire to protect a child from all of this. But from what I can see you have already done a tremendous amount to alleviate the burden on her, now and in the future. You have introduced all those close to you to one another - a great way to allow for networking and communication between those who care about you most. You have started out organized to the nth degree, with resources and a game plan mapped out, which will help her in more ways than you can imagine. You can and I’m sure you have also encouraged your D to talk to friends or a counselor, for support or practical advice. You can bug her to take care of herself, to get out and spend time with her BF and friends or relieve stress through healthy exercise etc. With you on her side and vice versa, you are a formidable team.</p>
<p>One thing that strikes me about what you are saying regarding the importance of financial and family support systems is that it is so true that many people don’t have those. Putting that aside for a moment, however, you DO have those things and it bodes well for you. The story of the patient who continued to do well through one clinical trial after another is one that especially resonated for me. How is it possible, I have wondered, that in my own relatively small circle of acquaintances so many people seem to be in the category of beating supposedly impossible odds? Well, I have become convinced that the odds are not the same for each patient, unfair as that may sound and actually be. Your news was a huge blow, but you have a strong advantages and defenses on your side, financial, social, spiritual, intellectual and medical. You have a loving daughter and many friends in real life and places like here - all rooting for you. </p>
<p>On that note - so glad to hear the recent good news. The fact that they can’t even see the liver spot to the point where the doctor was even questioning its existence for a moment is awesome. </p>
<p>{{{HUGS}}}} to you and your D, LTS, to your H UCDAlum82, and to you and your H dmd77. as well as to all of those here that have posted about similar challenges and to those of you who haven’t posted but are facing them just the same.</p>
<p>Late to school, I just want to say I look forward to your posts…your thoughts are lucid, you are clearly a force of nature, you are ethically sound, courageous and have an enviably accurate take on your self and others. Please keep sending us your For Real thoughts…and experiences. </p>
<p>My sister finishes her radiation this coming week, and had quite the dance with the local docs vs the second opinions at a major research hospital. She is aversive to “too much information” by her own personality, not introspective, and has never been one who sought out the latest on any subject, so advocating for herself has been a stretch.</p>
<p>Latetoschool,
Just wanted to let you know I’m praying for you tonight: complete healing, peace of mind. Always those two. I hope today was a good day for you.</p>
<p>UCDAlum82,
You sound like an amazing woman. Your husband is so lucky to have you by his side through this time that I can only imagine must be so confusing and difficult. I’m praying for you and your husband tonight, too. Same thing: complete healing and peace of mind. I hope your bike ride yesterday was fun for you and that your husband had a good day today.</p>
<p>Both of you give the word ‘strength’ a new meaning for me.</p>
<p>LTS: One of the few regrets I have in my life is that I moved so far from my mom. I visited very, very often but I missed the chance of meeting for a quick lunch or surprising her with a visit. As time goes by I realize that for me what really matters are the people I love and the people who have love for me. Everything else is just filler. Enjoy the wonderful relationship that you and your daughter have built together.</p>
<p>Continued thoughts and prayers to you both.</p>
<p>LTS, while I understand why you want your daughter to get on with her life, it seems to me that a few months out of 85-90 years (her life expectancy as a twenty year old woman) is nothing. Her “regular life” will wait, and having that support will indeed help your healing.</p>
<p>LTS, regarding your thoughts on how your daughter spends her time these days,
I remembered taking care of a grandfather in late-stage lung cancer. Everyone had been helping him who lived in that city, and I was already in my mid 20’s, living alone and working professionally far away. My mom called me and asked me to arrange a week off of work so she and her sister could all fly up to witness my cousin’s college graduation. We switched places, basically. As unprepared as I was, I’ll never forget that important week with my grandfather as the only bedside relative (he was hospitalized and aged 80). </p>
<p>He told me a few stories that hadn’t been shared with others. More importantly I had the observation that at the end of his life, after all the work he had performed, only the family was there for him; no employees or coworkers. </p>
<p>So from that I resolved to rebalance my own life and make sure I had more time for a personal life, not just career. I resolved to have my own children, whereas before that I was kind of “on the fence” about whether I should. So let your D do her thing and figure she’ll benefit most in the long run by being with you. She might have epiphanies that you wish you could have helped her discover, but she’ll figure them out herself. Everything else pales in comparison.</p>
<p>LTS, & LTS D:</p>
<p>Happy Halloween!! Hoping there was a little frivolity in your day today!</p>
<p>I wanted to keep this thread at the top for latetoschool.</p>
<p>How are things going?</p>
<p>edit - SBmom beat me to it!</p>
<p>Thank you for thinking of me; I am well. In chemotherapy this week - went straight from the airport Tuesday morning to the hospital, and the first day is supposed to be like five hours but it takes more like eight, by the time they run labs, hook me up, etc. Day two and three should only be one hour but it takes three. Fortunately I bring work, have blackberry and all my stuff, but, still, it eats up a ton of time and so then I spent the rest of my day making up my missed work. </p>
<p>Happily my daughter goes to the grocery store, feeds me, etc. And, yesterday, I felt - for the first time - that I am absolutely, positively, winning this thing…I always intended to win but have had deeply, troubling doubts - yesterday for the first time felt certain of a win. Cannot say why, or what changed. Do you know how you just “know” some things? </p>
<p>Also, got into a bit of an argument yesterday with an oncologist (not one of mine) who said small cell lung cancer extensive cannot be cured - might squeeze out an extra year if lucky but otherwise no. I wondered aloud if perhaps his patients were meeting his expectations. Many people, especially the elderly, put a lot of faith and trust in their doctors, and therefore perhaps they tend to drop dead on or about the expected date. Younger people I suspect take more of a “trust but verify” position, or, perhaps find another care provider altogether. That is what I think, anyway. But overall I refuse to believe I cannot be “cured”…my current doctors are certainly treating me with curative intent…I do totally, completely understand that their treatment strategy and/or prognosis can change depending on response to treatment but at least they aren’t starting out circling my date of death on the calendar…</p>
<p>lts</p>
<p>I used to wonder that about AIDS. Before there were effective treatments, people seemed to die soon after getting the diagnosis and I wondered whether they just gave up because everyone “knew” it was fatal and had no treatment. I do think it’s quite possible that many people live up to their doctor’s expectations.</p>
<p>LTS, it is unfortunate that that oncologist feels that way – unfortunate for him and for his patients. You are very aware that the odds are daunting but NOT impossible. Refer him to the below from the Yale Cancer Center site at <a href=“http://ycctrials.med.yale.edu/detail.asp?nm=CDR62947[/url]”>http://ycctrials.med.yale.edu/detail.asp?nm=CDR62947</a>. Note that it says most and we have already determined that you are NOT “most” people:
For most patients with small cell lung cancer, current treatments do not cure the cancer.
If lung cancer is found, participation in one of the many clinical trials being done to improve treatment should be considered. Clinical trials are taking place in most parts of the country for patients with all stages of small cell lung cancer. Information about ongoing clinical trials is available from NCI Cancer.gov Web site.
I am confident that your extensive research has led you to the best current treatment for YOU and that your docs know very well that you want to explore ANY promising new developments in treatment. I suggest you plan to put that negative oncologist on your Christmas card list for years into the future.</p>
<p>I have faith in your “knowing” that you will win.</p>
<p>As for your daughter, I too am a parent who does not want to limit my kids’ lives. BUT please appreciate that your D is growing in special ways through this experience. She sounds WONDERFUL. Allow her to express/live that “wonderfulness” through how she handles this challenge. There will be many other jobs, etc. in her life. Clearly, she feels “right” about giving priority to helping you through this now. Support her in doing what feels right to her. Your only job is to appreciate it. </p>
<p>Thanks so much for keeping us all updated.</p>
<p>
Our goal as parents are to raise our kids to become independent, caring, successful people who know themselves and can make thoughtful decisions for themselves. It sounds like you’ve suceeding wonderfully and your daughter does know what her choice of her next step in her life path is … I understand your angst about her giving up some things to be closer to you to be able to help … but it sounds like, to her, this is the only choice and she is doing what her inner self is telling her she should do … I know that is what I want my kids to do as adults. She sounds like a wondeful young women!</p>
<p>LTS - although I check CC regularly, I have studiously avoided hitting anything other than Parent Forum and my D’s school. Today, breaking all of my rules I hit the Parent Cafe. </p>
<p>I had noticed you hadn’t posted recently and I just spent the last 45 minutes reading all of your updates and blessings from members.</p>
<p>I believe with all of my heart that you are on to something with nourishing your body and encouraging your own immune system. As you receive chemo and allow it to attack your cancer, I think good food and imagery can support the healthy part of your system. We may never know why some people survive and others don’t, but continuing to bolster your core health has to make a difference. </p>
<p>COMPLETELY different health issue, but twelve years ago my H who seemed to be the picture of health (marathons, triathalons, etc.) had a massive heart attack and bypass surgery. We already were relatively healthy eaters - but long story short - we have changed how we look at food, at stress, at relaxation. All I can say is that we have the greatest medical care in this country in terms of attacking problems, but we are only starting to acknowledge the mind/body connection of health. I love Dr. Weil, particularly his early book, Spontaneous Healing. It is really uplifting. </p>
<p>Take care - and stick to your instincts.</p>
<p>ps - let your daughter care for you, she will NEVER regret it.</p>
<p>
</p>
<p>Let me tell you about our friend’s oncologist. We have a friend who got the diagnosis of non-Hodgkin’s lymphoma about 7 years ago. He is still in remission today, but his doctor did say that he would not be cured. He told him to look at it like a chronic condition. He used the example of arthritis, which I found shocking because arthritis seems so benign. It was so shocking to me that I still remember this conversation 7 years later. The point was that if my friend comes out of remission they have drugs to get him back into remission. If he doesn’t go into remission, or comes out of it again, the oncologist said that there are so many new drugs in the pipeline. He said that today (and this was 7 years ago) one can just look at the disease as a chronic condition, rather than a death sentence, but he also said that there is no cure. My friend has been living his life fully, and I mean fully. He goes for his occasional screenings, but that is it. I am telling you this to say “no cure” does not necessarily mean death.</p>
<p>LTS - have you moved to Washington yet, or are you still being treated in Florida? My S1 lives in Georgetown, and we’ll be there for Thanksgiving week! Because of the location connection, I pray for you everytime I think of him!</p>
<p>LTS - given what I’ve read about you and your daughter, I’d like to turn the issue around and see if it helps you see things a it differently. What if her significant other, best friend, or someone equally close had this disease, opposed to you, and she had the opportunity, with some employer flexibility to make some changes in her life to help this person. I’m sure you would fully support her wish to do so, as she is a very capable adult. Everytime you begin to have concerns that she’s sacrificing something in order to support you, ask yourself why you are holding her to different standards than if it were someone else. You would probably so proud of her if she were doing this for someone else… be proud that you’ve raised her in a manner that makes her want to do this for you, too.</p>
<p>I try very hard to not have bad days, or even bad moments out of this, but sometimes it’s just simply impossible. It’s no wonder the mortality rate for serious diseases is not lower; the stress of working with the information is simply overwhelming. I have not yet transferred care to Washington because they need to give me a treatment plan first; they cannot do so until they see comparative scans; I cannot (yet) provide comparative scans because the originating hospital lost them, and, the records department has a two week backlog to even be able to pull the pathology report. So, I am in the position of moving to D.C. but holding medical care in Miami - which sort of works, because I do like my local oncologist. </p>
<p>But Lombardi is sort of troubling to me at this point anyway (lack of responsiveness, and, when I asked for copies of my films, they did give them to me, but, they ended up being some other patient’s films). </p>
<p>So as backup, I am in the process of scheduling December and January appointments with Johns Hopkins and Sloan Kettering, respectively. </p>
<p>JEM, Northeastmom, I know you are trying to help, and I certainly don’t want to be negative or alienate support and people who mean well, but, this particular disease is so frustrating. Websites like Yale’s do not really tell the tale, as I understand it. </p>
<p>Small cell has an excellent response rate to chemotherapy and radiation - it’s really easy to kill, the first time. Then, it recurrs, very resistant and nearly impossible to kill - in 95% of persons. Then, there is a second line chemotherapy, which works in only 20% of persons. Then, there is nothing, except clinical trials. No third line. I was on the phone this morning with a trial researcher; we found two that I might qualify for if I need them (we are trying to work this as a “worst case scenario” position) - anyway, one is in California, the other in Cleveland. But they are phase I and II trials, and, I see nothing in the pipeline for phase III trials with curative intent, and, unlike other cancers and illnesses, I see nothing in the new drug pipeline, either. Bottom line, no one is working on this. Or, they are working very hard on it, and cannot come up with anything that works against small cell. It appears to be very discouraging for researchers, etc. </p>
<p>Even Johns Hopkins admiited this morning “yep, pretty much everyone dies after the recurrance” - I told them, gee, I really wish you would have said just about anything but that.</p>
<p>Of course, it doesn’t mean that it is hopeless - the goal is to get to a remission position, and try to stay there. Then, the longer one stays in remisssion, the better the odds, however, it’s equally critical to make sure to find a physician that supports a very aggressive treatment plan. In the long term survivors I have spoken to, they all appear to have been in the care of doctors who pushed the envelope in terms of treatment.</p>
<p>Between your intelligence, research skills, and willingness to push the envelope youself, you will be one of those to beat all odds. The organizational pieces of this are so discouraging at times though! Fortunately you have the skills to negotiate the maze. I imagine all the point of light and prayer sent in your direction, and know you have amazing forces on your side.</p>