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<p>[delawareonline</a> ¦ The News Journal, Wilmington, Del. ¦ For this multiple cancer survivor, mind over ‘tests results’ matters](<a href=“http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20080128/OPINION08/801280318/1109/OPINION]delawareonline”>http://www.delawareonline.com/apps/pbcs.dll/article?AID=/20080128/OPINION08/801280318/1109/OPINION)</p>
<p>"I am worried that I am signing on with a doctor just because he is saying things that I want to hear… "</p>
<p>Stop worrying, if you both are on the same page, you are a team with a common goal.</p>
<p>My wish for you: a good, restorative sleep tonight, then wake refreshed and ready to resume your fight with your new team at your side.</p>
<p>Like several others, lts, your description of new doctor brought tears to my eyes as well. Someone who will really try. I know you are not asking for guarantees, (though of course you would love them) just someone who will fight with you for your best shot.</p>
<p>It’s so little to cry for; all doctors should be like this.</p>
<p>But it’s also so much. I did lie in my bed last night when I couldn’t sleep either and pray for you and others here. I heard the Brahm’s violin concerto today and prayed again.</p>
<p>An analogy, though not about life-threatening illness. When I was pregnant with D an older friend got me to switch doctors because my doctor was a resident who didn’t have enough experience, in her opinion. She sent me to her H’s practice.</p>
<p>One of his colleagues told me, “with your fibroids I’d be surprised if you carried this fetus until it is viable.” Oh my god, he was talking about my baby.</p>
<p>I ran back to the first doctor. She gently said, 'well yes, we talked about the danger of fibroids, but I didn’t think we had to dwell on it." I carried D 41 weeks! and then S 39!</p>
<p>Attitude and partnership are both important.</p>
<p>I am so glad.</p>
<p>LTS- I learned long ago degrees hang on a wall, but experience and an open mind make the doctor good at what they do. Sounds like you found a Dr. as strong and determined as you! Introducing you to a long term survivor, what a blessing as well.</p>
<p>4Giggles</p>
<p>My thoughts are with you.</p>
<p>LTS,
your most recent post really speaks to me… I think that you are almost home free… I wish for you a chance to tell your newest doctor what you said here…that you are tired of playing doctor and patient…that you are ready to pass the doctor reins to the doctor… if they are willing to take them… so that you can concentrate on being the patient, the human you are and resume your life…cancer and all… that you want to trust … that you are ready to trust and that you think this is the time to cede the ownership of the medical information to him/her. You are not ceding all responsibility, ie you will continue to learn and understand, but you don’t have to do it ALL yourself. Luckily, you have gotten yourself this far. No idea why it has to all be soo hard. Someone famous once said “Never, ever give up!” Instead give yourself permission to watch “A Daily Show” which is guaranteed to make you laugh. Love sent your way…</p>
<p>Quote is from Winston Churchill. Maineparent, I think you know about this, too. I like your very wise post.</p>
<p>LTS…
Came acros this article that I thought might interest you:</p>
<p>Cancer Struggles Inspire Patient Crusader</p>
<p>[Cancer</a> struggles inspire patient crusader - CNN.com](<a href=“http://www.cnn.com/2008/HEALTH/01/30/bg.paf.founder/index.html]Cancer”>Cancer struggles inspire patient crusader - CNN.com)</p>
<p>discusses Patient Advocate Foundation</p>
<p>It’s not that he “told you what you wanted to hear.” It’s that he told you that what you wanted to hear is valid and that the path you want to take is a path he will walk with you. And that he does things differently and looks at things differently from the “standard of care” for very legitimate reasons.</p>
<p>It is right that you found him.</p>
<p>late to school…my Book Club just left my home and I came in to see if you had news. </p>
<p>I am relieved that you met someone whose focus is on Practice! He is going with practice wisdom as well as the latest standard of care, and he knows there is a lag between journal articles and reality in those people fighting your cancer. My own sister, a perfectly wonderful teacher…recently declined Duke’s recommendation to do chemo plus radiation and went with the local oncologist’s belief that she would get negligible benefits from chemo and could skip it without much risk increase…as they all agreed she had very little to gain from chemo in her particular cancer scenario. She did only radiation for breast cancer…why? it is early cancer and the data which leads the “majority rules” standard of care is not based on cancers caught early like hers. Her local docs are following people more like her profile in Scandinavia where cancer is picked up early in a population because health screening is more universal. I am not suggesting Duke was wrong, and we know they were well-intentioned and cautious on her behalf. Certainly she was also able to listen to them and absorb their rationales…but she also listened to her oncology team, and made her own conclusions. Most people would simply follow the Second Opinion at a well known research hospital or worry themselves silly over being viewed as “noncompliant and in denail.”</p>
<p>I detect some wi****lness that you cannot also rely on the second doctor that so shocked you with his callousness yesterday since his credentials were so highly touted. It is only natural that you want the support of anyone who has a reputation of being knowledgable and who has earned medical peer admiration. I am also sad the colleague didn’t call you back either. People are just so…human and fallible in character.</p>
<p>You never know. You may have an opportunity to speak to that man again in a way that may provide him with a small but hopefully meaningful epiphany. He failed to built that therapeutic relationship with a new patient with many legitimate questions and some good leads. What could be more important than making that first connection with a patient.</p>
<p>And truly, in your situation, don’t even apologize for looking for people who have something else to say right now. You have plenty of time, as you so eloquently stated, to face the big existential questions, but now is the right time to build a therapeutic alliance with a doctor who does not view your need for information and and your preference for real dialogue as denial. I will sleep better tonight knowing you have a fledgling therapeutic alliance in the making with a doctor who allows experience to also inform his practice.</p>
<p>Next month we are going to read the new Edith Wharton bio by Lee. It looks very diverting and there is so much about Edith to admire. just a diversion suggestion.</p>
<p>by the way: We all like you. We really really like you. 
Really.</p>
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I know its probably one more hassle you don’t need to deal with, but I don’t pay medical bills that I think are out of line or which I disagree with. I write letters to protest the bills. I’m assuming you are going outside/beyond your insurance and paying out of pocket for many of these consultations. My guess is that if you asked, you were probably quoted the fee for the first visit and ought to pay it - but if I were you I would protest the followup, writing a letter of polite complaint - pointing out that the doc gave you inaccurate information. You might want to wait until the results of the followup CT scan are in – if (and I certainly hope that this IF comes true) - it turns out that the PET scan was misleading and the areas of uptake are a result of your infection (not cancer)… then you will be easily able to show that it was malpractice for the MD to recommend the funeral-planning approach to treatment. You don’t need to sue… just putting aside those bills until after you know and then documenting specifically why you didn’t get the quality advice you paid for should be enough to make them go away.</p>
<p>Life is going to be expensive enough for you from here on out without your having to watch thousands of dollars trickle away to have your time wasted. So I’d recommend that you start by setting up separate “pay now” and “pay later” files for your medical bills, and don’t be afraid of writing letters to protest bills you don’t like. (If the doc is so sure you are at death’s door, give his billing office the name of the executor of your will – then they can wait and submit a claim against the estate. If you decide to stick around for another 10 years… they’ll just have to deal with you and your protests.)</p>
<p>LTS, i just wanted to say thank you for your posts. they really do mean a lot. daily, you remind me why i need to go after what i want, now. im praying for you.</p>
<p>LTS: A couple books that might be of interest after you’ve won this round:</p>
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<p><a href=“http://entertainment.timesonline.co.uk/tol/arts_and_entertainment/the_tls/article3277880.ece[/url]”>TLS | Times Literary Supplement;
<p>Thanks to everyone for your thoughts, wishes and prayers, I appreciate it. I do want everyone to know that often I want to address or answer an individual post, and intend to come back to it later, and don’t get to it or at least not as fast as I would like.</p>
<p>Epistrophy, I read everything you send. I often cannot digest everything as quickly as you can send it but I do come back to the links again and again. One phrase in one of the links you posted some weeks ago was “…don’t let cancer get you on your knees - you have to stay on your feet…” replayed itself in my mind over and over again yesterday, and in large part got me through the things that I needed to do to solve this immediate problem. I just kept telling myself, I cannot let this defeat me. </p>
<p>Calmom, thanks for that, I have been very worried about the possibility of brain mets for a while, and even though my September MRI was clean I am aware these things can happen at any time and the symptoms can be just disastrous - anyway, last week, I took my daughter around to my financial institutions and made her signatory and joint on all of my accounts. This way if something horrible happens she has access to all funds and plus this skates past probate. As part of that I have turned over some of the responsibility of bill paying to her. She needs to do this now in order to become familiar with what is owed and when, etc., not try to figure it all out in the event of an emergency. My daughter is obsessive with money and there is no danger anyone will get one penny out of her that they haven’t earned. </p>
<p>After sleeping on all of this, I realized that the first doctor decided on a treatment plan on the basis of one piece of paper - the preliminary PET report. He ignored everything else, including the documents and studies I brought to the second consult; he wouldn’t even look at them. He didn’t ask for brain MRIs or medical records or anything else. </p>
<p>The new doctor wants to read the medical records and have the brain MRI etc. before issuing the orders for the treatment plan that we have agreed to in principle. </p>
<p>I am still continuing the due diligence but so far everything looks good.</p>
<p>It is mind-boggling to think that a highly regarded oncologist could make such important decisions (scheduling treatments that preclude trial participation, advising a patient to give up hope) on the basis of incomplete information. And 99.9% of patients would never question it. Is it any wonder that the statistics are so gloomy?</p>
<p>I am glad that you’ve finally found an MD who will review everything including new brain MRI he ordered, listen to you, and will hopefully have new ideas on how to treat you aggressively. I am angry that the first MD in Miami was so poorly prepared for your last meeting with him and that the first MD in VA took away all hope in his comments regarding your care and prognosis. Unfortunately some of the best MDs have poor bedside manners and the opposite is true as well – some of the least knowledgeable are great with patients. </p>
<p>My nephew was diagnosed with cancer at age three and his pediatric oncologist knew so much but was lacking in her interactions with him and the family; my sister learned which assistants and nurses would be more helpful and tried to deal with them whenever possible. Even though her pediatrician picked up the cancer, the MD never called the family during the year of treatment so they ultimately changed pediatricians. My sister was like you in that she was obsessive-compulsive about seeing every single lab report, CAT scan report, etc. She charted everything so she’d be on top of any change and could question the MD or nurse about it. She also double checked each and every med, amount, etc. given to him at home and in the hospital. An attorney friend took charge of the insurance bills – which my sister would review whenever possible to confirm that each item was accurate (difficult to do because of so many little line items ) – so that the family could focus on my nephew. I know you are on top of all these issues and am glad you’ve involved your daughter in the financial end. Having seen and heard about hospitals and medical care first hand (the good and the bad), I know how important it is to have your own patient advocate to step in and assist when you are not feeling well enough to do so. Good luck in your fight and I really appreciate it how you keep us on CC posted with updates.</p>
<p>you are such an articulate person, and there is no need for you to respond to our myriads of responses individually. Your updates are very appreciated. </p>
<p>This cyberteam of your peers-- assembled on CC --view you as a creative force in this world, a terrific parent, our contemporary…and someone with a nuanced grasp of things of the heart and mind. I am confidant you will soon settle into the support of a great group of medical allies. And I hope you get that call back today sometime. I only laid that egg with the Sally Field quote last evening because I was frankly sad/affronted that you also did not get the support of a call back in 24 hours from someone else who is a “gatekeeper” to a lung cancer center. I hated to think about how that felt when a call would have been such a plus on a very hard day. It can be mystifying to hit these walls in gaps in humanity/basic communication while you are deep in the crucial work of assembling the players who will be your allies in the care of your health.</p>
<p>LTS, I’m sure that none of your CC cheering section would like this thread to become a burden to you, yet one more thing on your list of things to do, that take away from your real life. We all look for and appreciate your updates, but certainly do not expect individual responses to our posts, or to PMs. </p>
<p>epistrophy, I appreciate the links you post and read many of them with interest. I read Sandra Steingraber’s first book years ago, and found her column that you linked to very powerful. I plan to read the books she reviewed.</p>
<p>Faline, I got your Sally Field quote and smiled at it. I didn’t think you laid an egg. I find your posts very insightful.</p>
<p>LTS, this view into the world of an unusually resourceful cancer patient is very eye-opening. I hope that once you beyond this crisis you will publish something, an article if not a book.</p>
<p>… . LTS
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<p>(that’s all of us supporting you) :)</p>