<p>
</p>
<p>This reminds me a bit of an old Zen saying, which goes roughly like this: </p>
<p>“We study the self in order to forget the self.” - Dogen</p>
<p>I am glad you found a gifted clinician to work with you through this. And so thankful to you for sharing this with us. You are magnificent. For some reason that is the word that comes to mind.</p>
<p>I forgot to add - this goes back to my insistance that we have to - just stone cold HAVE to - do something about the health care system; it is a big, horrible, tangled up mess and there is no silver bullet, of course…anyway, she has been in the health care system for a very long time, counsel to patients with very serious illnesses. I was describing to her some of my frustrations - even just the simple matter of getting scans scheduled properly, and lobbying the techs to speed the results to my oncologists, and getting films sent here and there. And I have plenty of resources and have complete control of my schedule. How very, very difficult this just has to be for people who are restricted by their resources (limits on insurance or underinsured) or who have employment issues - anyway, we talked about this, and how horrible it is, and even worse, for someone who has never been sick before, ever, not even one time, with the exception of a sinus infection like ten years ago, it’s simply overwhelming. Just the sheer management of the details is overwhelming. </p>
<p>So we talked about this and what an incredible stress factor it is. We didn’t come up with a solution, but, we did agree that the system needs very serious work, and we just have to do something about it. I am no further along on this than I was the last time I posted about it, unfortunately, but, I will have some sort of plan in place in Q1. She talked extensively about how destructive the stress factor of the health care system is to a patient’s immune system.</p>
<p>In the short term, it might make sense for everyone to have some sort of plan in place in advance - sort of like the hurricane preparedness kits we all have in Florida; perhaps it makes sense for families to have some sort of continuity strategy or plan of action in the event of sudden serious diagnosis.</p>
<p>latetoschool: Right there with you about the health care system. And thank you for your insights about empty nest syndrome. Knowledge is power.</p>
<p>Mythmom, I actually have a mirror group of oncologists, meaning, I have teams in two cities. Each gets paid; this works for me because I have LOTS of eyes on this. It’s sort of protection against anything falling through the cracks - so - anyway, it probably makes things a little more difficult because of the need to make sure everyone has all of the same information. </p>
<p>In any case, this afternoon I was talking to the business manager for the cancer center in Washington; we were talking about some of the second and third line chemotherapies for this in case they’re needed, and, I told her that I called the drug company directly because I wanted to know the price of the second line chemo. Not that it matters, I was just curious - you wouldn’t believe the answer - it’s something like whatever the drug reps wanna charge for it - and the Medicare allowable is only $15,000 per treatment or so, not bad, but, anyway, how horrible, as, people will pay ANYTHING if they think they will stay alive. Can you imagine what the margins must be? But anyway, my point is, the business manager was explaining how awful it is for physicians to have to have the business people breathing over their shoulders all the time. It really, really interferes with patient care. And, they actually prefer to work with the uninsured and the indigent - they have a LOT less interferance and frustration vs. working with the needs of the insured. Basically, no insurance, you can pretty much get whatever you want rather easily; comparatively, if you have insurance, there will be lots and lots of oversight, delays, weird decisions, and not all of it goes the way the physician wants and the patient needs.</p>
<p>LTS:</p>
<p>I, too, felt relieved when I put my affairs in order. One less thing to worry about. I could concentrate on getting well.
I agree that the health care system needs fixing. I wonder, though, whether worrying about it is a good distraction from your worries or another source of pressure you don’t need at this moment?
About the medical bills being a major stress factor: I heard Barack Obama talk about his mother. She died of cancer at 53. He said something along the lines: She was not worried about her health so much as she was worried about the medical bills. Things have not changed since.</p>
<p>Hoping you are not snowed in as we are!</p>
<p>lts: So disturbing to read that. I’m sure you will put your notes to good use. Lots of time to fix things. Like marite, I want you to do whatever you think will help you. I think we’ve all had a few go arounds with the health care system; I have my own horror stores. We can all focus on fixing.</p>
<p>Marite, I am in Miami at the moment; just leaving for the gym; can you guess what I’m wearing :)</p>
<p>As to the health care system, it’s just not in my DNA to stand by and do nothing. I have the bills well in hand, oddly; I’m pulling down record revenue (how weird is that), I’m not worried about money. I am very upset about the system though. </p>
<p>I fired a radiation oncologist off the team last week because, I left a message for her to call me at her convenience; I had some questions; she returned my call; I was right in the middle of my questions and she actually had the nerve to say to me “could you hurry it up some, I have some other people waiting”. </p>
<p>Um, no. You don’t get to address me that way, not now, not ever, you just, nope, stone cold do NOT get to talk to me that way. Not when I have some disease that says that the median is six months and the survival rate is 1% - 6% at two years, and I am counting on you to help me AND paying a lot of money to do so. And certainly not when you’re a radiation onc with a LOT of alphabet stuff after your name, and I’m so new to this whole ugly mess.</p>
<p>So I fired her off the team. But most people cannot do that, or at least, they cannot do so as easily… </p>
<p>So the system HAS to be fixed. And sick people are the only ones in it who CAN fix it. That means me, and everyone else who is stuck in it.</p>
<p>LTS:</p>
<p>I get you. I just hope you don’t get stressed to the detriment of your own health. That has to be your priority. I agree with you about the oncologist. I would have fired her, too.</p>
<p>I understand where everyone’s concern for LTS’s being “stressed” over trying to improve the current healthcare system. My impression, though, is that this woman is a force of nature who gains strength from moving forward in all things she encounters…work, healing, and, yes, even the pitfalls of our broken healthcare system. To ask her to not focus on something upon which she could have a positive effect is like asking a bird not to take wing, IMO.</p>
<p>I trust, LTS, that you will put yourself and your own best interests in the position of primary importance. We all love ya, so that is all we ask!</p>
<p>LTS - you and your doctors will continue to be in my prayers. I commend you for wanting to help mend this broken health care system. I also fight it, try to work within it or around often with my sons health issues. Keep up the good fight and enjoy the warm Miami weather, it is COLD here.</p>
<p>
</p>
<p>You are right on the ball LTS. Sad but true.</p>
<p>P.S. to #783:</p>
<p>The advice from the psychiatrist, concerning the need to confront and work through an issue - here, death and dying - in order to be able, ultimately, to put it aside, also reminds me of a line by Robert Frost: “The best way out is always through.”</p>
<p>Agreed, Epistrophy. That’s why - in spite of dozens of people pleading with me to just cave to anti-depressant meds, I firmly believe in facing this thing head on, and not hiding behind some chemical artificial reality. </p>
<p>Doctors said no progression; things are going well and I am having an excellent response. We also got into quite a discussion - it turns out that I am a very annoying, irritating patient, their exact words. I said well, I’ve never been a cancer patient before, guess I’m not very good at it. Sorry. They said I need to trust them. I said well, o.k., my position is sort of “trust but verify”. They told me that I do not have the medical knowledge to decide my own course of treatment, so, I should stop trying. I don’t need to quote to them from the Journal of Oncology etc. </p>
<p>I said, well, sorry, I have a disease that 95% of people die from, within one year of diagnosis. I’m going to be just a little bit, ah, INVOLVED!!!</p>
<p>But after some discussion we ended the visit on positive terms, and even hugs. They really are fighting very hard to save my life.</p>
<p>But I’m confused as to their expectations - do most patients with my diagnosis just sorta sit around and swallow wholesale whatever they’re told, and not ask any questions??? Not verify what their doctors say? Not look for alternative answers? Not do their own research? If so, I’m starting to understand why 95% of them die…</p>
<p>LTS, many, many people have very little medical knowledge, and even when faced with a problem are often loath to find out more about it, trusting that the doctors “know what they’re doing”. Or they may have no idea <em>how</em> to find out. You’d be amazed at how many of my intelligent, well-educated friends call me to ask about minor medical issues - things which I thought everyone knew. (I’m no doctor, I just read the NY Times Science section every Tuesday!)</p>
<p>Anyway, I applaud you for doing exactly the opposite, taking control of your health, and doing what you know is best in your case. You’re in my prayers.</p>
<p>I think churchmusicmom is right about LTS - she observes a problem, and her mind gets to work on it. There probably isn’t much choice involved. I was amused, LTS, by your near-apology for not yet having come up with a solution to the health-care crisis, and your promise to accomplish something in Q1! </p>
<p>In answer to your question about most patients, you are definitely in a small minority. I have had relatives with cancer, and offered help finding the best specialists, and tried to discourage them from using their friendly neighborhood clinic for cancer treatment, and more often than not, was told that they preferred to stay in familiar territory, that they didn’t really want to know the details of their disease, they wanted to leave it up to the doctors to solve. </p>
<p>I’m glad that you and (most of) your doctors came to terms with your approach. Of course you are absolutely right, but be aware that they do not often encounter someone like you. It’s easier for them if someone just passively follows directions, doesn’t ask too many questions, etc. - thus the unfair characterization of you as an “annoying, irritating patient.” </p>
<p>I think it’s interesting to compare these attitudes to those in other professions. I’m sure you’ve used lawyers to do work for you, LTS. Have any of them ever objected when you questioned them closely about what they were doing? Would any of them expect, knowing that they were working for a top businesswoman, that they would be dealing with a passive, accepting client? Of course not!</p>
<p>
</p>
<p>As long as you brought up this issue, in response to my last post:</p>
<p>For whatever it may be worth, my own view is that there is nothing at all incompatible between, on the one hand, taking antidepressant medication (or any other psychotropic medication) in appropriate circumstances and, on the other, “facing” something “head on.” Put another way, I do not equate taking such medication in appropriate circumstances with “hiding behind some chemical artificial reality.” However, I understand of course that this is the sort of issue upon which people might reasonably have different views. And there’s room for all kinds of disagreement as to what might constitute “appropriate circumstances” for taking such medications.</p>
<p>(And at the risk of perhaps stating the obvious, I certainly do not mean to suggest by any of this that you ought to consider taking such medication. Among other things, I would never presume to give such advice - one way or the other - knowing as little as I do here.)</p>
<p>LTS, from my own limited observational experience it seems that a lot of patients DO just follow doctors’ orders (IF that much!). Passivity is common.</p>
<p>But I figure a doctor who is confident and comfortable with how he or she is handling a case should appreciate questions and input. It makes the patient a part of the treatment plan process and that can only be for the good. Plus docs are so busy treating patients that they may not have as much time available for researching options as would be ideal. So whatever you, the patient, can bring to the table may be very worthfy of consideration, and every additional margin of helpfulness could help build the critical difference in outcome you seek. </p>
<p>You may not have much medical training but your research and critical thinking capability are very strong. Putting those skills to work for you only makes sense. (By the way, Randy Pausch has clearly taken the same approach, and has never stopped researching options for his situation.) </p>
<p>You are an exceptional patient and I am hoping that that will work for you to help you become an “outlier” re the stats. When that happens your docs will be sure to share the joy of victory! </p>
<p>Great to know that there is no progression in the disease, and that you are having an excellent response to the chemo. Nice news with which to start the weekend! :)</p>
<p>Not to be dismal, but even sitting on my hands I am unable to stop myself from posting that the gentleman I mentioned in a prior post has just died. He was diagnosed with small cell four days after me; he and his wife just had their first child October 2. He was 31 years old, and a never-smoker. He was also a policeman, and leaves his wife, ten week old son, both sets of parents, and siblings. He had never been sick before and went to the doctor in late August suspecting bronchitus etc. </p>
<p>Given the aggressiveness of this particular cancer, it’s hard to imagine patients wouldn’t work very hard to check behind their doctors, verify facts, look for the best specialists, etc. </p>
<p>Epistrophy, I get you. I really do. Almost all of the long term survivors I have spoken with were, and many still are, on anti-depressants. They swear by them. It just doesn’t mesh with my “style”. The doctors and I talked about that a little bit today - to my extreme relief, they said that they know there are times when a patient just has a very strong 6th sense that a particular course of action (treatment) will work, and, in those cases they will push the envelope, and do the unconventional. My sense tells me that placing any medication in my body that is not 100% critically necessary is a mistake. I don’t know why I think that and I do not have any science to support it, but that is what I think. </p>
<p>As to other people living with very aggressive cancers, I sincerely hope that funding levels to NCI are restored, and that we can get moving on rehabilitating the system…</p>
<p>LTS - still crossing my fingers for your discussion about the meaning of your scan.</p>