<p>I would like to add my prayers for you as you continue on the path of a survivor. And I may I say that I admire your spirit and fighting attitude.</p>
<p>LTSâŠwhen I think of you, I think of SurvivorâŠyouâre gonna be the one left standing. Itâs part of your nature. Youâve been tested before and it must have been the build up for this next challenge!</p>
<p>LTSâŠI admit when I read past posts about your desire to live close to your college-age D, your desire to be as close as possible, I had my doubts. That wouldnât have been my choice. </p>
<p>What a lesson Iâve learned now. I am sure your close relationship is a blessing to you both in this time of crisis. No matter what happens, she will have all of those moments to treasure.</p>
<p>I shouldnât have doubted your instincts for your family. Youâre a very clever gal.</p>
<p>Hi - just a note to thank everyone for all of the wonderful, kind and thoughtful posts. They mean a lot to me and I very sincerely appreciate each and every one of them. I was not planning to post this information at all - itâs not about college after all and itâs negative information and it doesnât really help anyone else or contribute to the community for me to post it - anyway, I came home from the hospital and had been quietly lurking for a week and would not have said anything if someone (Patsmom?) hadnât asked where I was. I am glad to have posted and very thankful for so many responsive encouraging posts. JEM, I very much did like the story - and reading ânormalâ things helps me tremendously, especially as a break between researching my illness, and doing my work. </p>
<p>I am especially very thankful for the many PMs and those of you who have shared your personal stories. Some of my friends in real life have explained to me that it is difficult to find survivors to talk to; most seem to want to forget the cancer and the entire experience once they are cured or in remission, and I can certainly understand this. I will answer my PMs very soon and I apologize for those I have not yet answered. </p>
<p>Calmom, thank you for what you posted about charts. I am wondering if you can imagine that another document I read in my chart was completed - or at least signed by - the staff radialogy oncologist. Part of the form appeared to be a psychological assessment, with about 20 words such as âsuicidalâ or âdepressedâ or âuncommunicativeâ and places to check boxes beside each word. This oncologist checked âanxiousâ, and, she also checked âdepressedâ. </p>
<p>Now, anxious? oh, absolutely, as well as terrified, and so, so shocked. Deliver this news to any rational person, and, oh, yes, they are going to be very, very anxious. But depressed? Thatâs ridiculous. In the first place, at the time the form was populated, I had the information less than 72 hours. I was VERY busy with matters like making PR decisions specific to business (who do we tell, what do we say, how do we protect business interests); re-arranging travel and rescheduling business commitments (I was supposed to be a key note speaker at an event last week, then, I had to reschedule like three flights); completing other conference calls (I actually completed a two hour long conference call to Tokyo from my hospital bed on Sunday); plus, I was meeting with lawyers, all the operational stuff that goes into making room for this, I was informing close friends, reviewing CVs and other information re oncologists, ordering research, then I had something like 300 email backed up I had to answer, and, I still didnât have anywhere near enough information on the size and scope of this monster to even get anywhere near âdepressedâ. </p>
<p>So, my last day in the hospital and my last radiation treatment (for now), I finally got some time with her, and, in addition to some other questions specific to my treatment plan, I confront her with what she wrote on the chart. Guess what she said? âI didnât write thatâ. But you did, I insisted. I saw it. Itâs there. So - this became a âno I didnâtâ vs. âyes you didâ situation. Finally, I said, âI am not sure who actually checked the box, but, your signature is on that form. You authorized - and signed off on - the informationâ. She denied it again, and, she got very, very defensive. </p>
<p>I found this soooooo surprising - there I am, sitting on a gurney, in a hospital gown, still very swollen from SVC, bruises on both arms from IVs, and, in my condition, what threat can I possibly be to this physician? I expected poise, polish, professionalism; instead I received adolescent defensiveness and arguments. I stopped just short of demanding the chart be produced on the spot to prove her wrong and demand she either support what she signed off on, or, she issue a correction, but, the conversation was going absolutely nowhere, and, there were some things I needed to know about radiation that were to me at the time 100 times more important, so, I let it go, and so this âinformationâ is still in my chart. </p>
<p>I am sure I must sound like someone who argues with people all the time and this isnât the case - I just have a problem with information in official documents that is either completely inaccurate, or way out of scope of what may have been discussed, etc. I also have serious problems when educated professionals get defensive and whiny. Is it just me - or - are medical charts just full of subjective wild guesses and inaccuracies and other sorts of ânoninformationâ? Do most people read charts? Is it advisable to read charts? Or maybe itâs my profession - in my world, we do not issue statements or sign letters or documents or anything - not even email - without making sure 100% of what we write is factual, correct, and we can prove it. But of course I think about FOIA and 100 other things. So maybe I am applying a personal obsession to a subjective professional field and perhaps these things donât matter as much in medicine?</p>
<p>For now, I am thankful that the radiation oncologist wonât have any more to do with my care and that my oncologist will arrange for a replacement for her. People who cannot respond to what I believe are reasonable questions with professionalism have no business being in charge of delivering radiation to me.</p>
<p>LTS-</p>
<p>You are absolutely right to have the attitude that anyone delivering
care to you had better be prepared to be on the âAâ team. </p>
<p>I really admire you, LTS, and Iâm praying for you through this tough time.</p>
<p>LTS, to answer your questions â I think that most people do not read their medical charts, but you do have a right to see them. I also think that medical staff do fill out forms in a hurried fashion, so it would be easy for someone to make an error in judgment when going through a check list â though that is no excuse for being defensive or denying the problem. I donât think a notation about âdepressedâ following a cancer diagnosis is going to be harmful in the greater scheme of things (itâs a pretty normal response to sudden bad news) â but depending on the order of events, it can explain why you had a staff psychiatrist arriving on the scene wanting to prescribe medication to help you through the depression and sleeplessness you had never complained of. </p>
<p>Do keep in mind that because of the screwy way that health insurance works, medical professionals often need to fit things into diagnostic categories in order to justify further services. So there could be hospital policy at work too: for example, the hospital wants everyone newly diagnosed with a life-threatening illness to be screened by the staff psychiatrist, but some insurance companies only pay for such screening if there is a specific reason for referral â so it becomes âpolicyâ to always check the âanxietyâ and âdepressedâ box in order to make sure they psych bill gets paid. I donât know if in fact that applies to your situation â its just conjecture on my part â but it does explain why sometimes you see things on a medical chart that donât really apply.</p>
<p>Sending you warmth and good thoughts on this Sunday night.</p>
<p>Calmom, thanks for that, that makes sense. Perhaps that is what happened or perhaps she just checked boxes without thinking, or perhaps she has signed off on that form so many times she no longer knows what it even says. </p>
<p>I requested tons of information while in the hospital and one of the articles that I received described how some oncologists prescribe less effective, âweakerâ chemotherapy to women with perceived lessor social support, the rational being that the stronger chemotherapy makes them too sick, and without family/friends to care for them, they will not be able to care for themselves and therefore will not do well. So weaker chemo for them, but the price is the cancer isnât killed off or at least not as effectively, and they do not live as long post-diagnosis, etc. </p>
<p>This made me want to connect a dot that the psychiatrist asked - only one living relative? just one daughter? I remember feeling somewhat annoyed that I had to explain to this man that yes we have a very adequate social support system, even if all but one are not blood relatives. Annoying, as in my mind this situation calls for scientific strategy, non psycho-drama. So, anyway, when I interviewed my oncologist, I quizzed him carefully - to what extent - and how - do the political, social and even financial issues impact his treatment planning, selection and prescription of medicines, etc.? He was VERY emphatic that he ignores all political and financial issues - âthey have nothing to do with my prioritiesâ, and knows, and focuses only on what my body needs to fight the cancer. I wonder if this is a good or wise thing, and, if it is a good thing, if itâs really possible for him to do. </p>
<p>I know that just a few days experience with this, my entire perspective specific to healthcare is changing. I had no idea the healthcare system was in such a tangly, scary, frightening mess.</p>
<p>Sax, thank you so much. Each and every post means so much, I really appreciate it.</p>
<p>LTS, Prayers for you tonight and every night. And they work- Iâve seen it happen. Watching my dadâs battle with cancer- I am convinced that the medical establishment errs on the side of negative. No matter, with all the people here on CC supporting you, praying, giving good vibes toward you; and your will to beat this thing⊠you have the worldâs greatest army behind you. Go for it, weâre all behind you. We have your back.</p>
<p>
</p>
<p>And you, LTS, are demonstrating with unmistakable clarity that you are up to working with that system in a strong and rational manner!</p>
<p>I send my prayers and good wishes along with everyone else. </p>
<p>I do feel lots of negative energy coming out of your descriptions of your dealings with some of the doctors. They think youâre depressedâŠlaugh it offâŠprove them wrong, make it small stuff. Laughter is an integral part of healing.</p>
<p>Latetoschool â just got back from a weekend away. What a shock! Sending prayers, support and positive energy your way.</p>
<p>LatetoschoolâYOU GO, GIRL! This disease just doesnât know who itâs messing with (neither, it would appear, do some of your doctors), so youâll just have to show it.</p>
<p>LTS - Tell anybody who asks that you have dozens of invisible friends ready to come support you at a momentâs notice. 
Thatâs what my family calls all you folks on CC - my invisible friends. (I donât suppose that will foster a good discussion with the psychiatrist, though.)</p>
<p>Family is highly overrated sometimes. ;)</p>
<p>Shocking news, but the last post made me smile.</p>
<p>Count me among your âinvisible friendsâ pulling for you.</p>
<p>LTS-</p>
<p>Another invisible friend here! Thoughts and prayers with you.</p>
<p>(My Mom (78 years old) was diagnosed in March. She lives in Florida, and we have had some discussions about her care. I did fly down in July to meet with the oncologists.) Mom is flying up this weekend to visit the family. She has stopped radiation, but continues chemo.</p>
<p>LTS, the oncologist obviously has picked up from your incredible focus on fighting the disease and educating yourself on how best to do so that you will want the most aggressive treatment. Youâve proven that you can handle it. As to the wisdom of his ignoring political & financial issues â He sounds like a doc who will make sure his treatment plan isnât knocked off the rails because of any outside problems. Youâve spoken of your network of friends, and hospitals DO know how important the volunteer groups, parish helpers, etc. are. But they tend to want to âCYAâ by checking a box or adding a quick note to the doc or nurseâs notes: âSocial services contacted.â</p>
<p>Calmom is correct about the depression box being checked to assure the psychiatristâs involvement was covered. Her complete failure to view you as an individual, and her decision to immediately start prescribing sleeping meds or anti anxiety meds is inexcusable, however. But sadly, docs & hospitals have been burned in the past by law suits. Thsi leads to almost cookie-cutter standard & reasonable treatment plans. More âCYA,â and more work & aggravation for an involved, informed patient such as yourself. </p>
<p>As a former med surg nurse, I always hated the inflexible language of doc & nursesâ notes. As I did nightly rounds on a sleepy, comfortable, stable patient, who really didnât want or need a sleeping pill, it seemed ridiculous to chart âpatient refusedâŠâ It makes the patient seem beligerent. But that is what is required. </p>
<p>Your description of the business you handled while lying in a hospital bed makes me feel exhausted! You are truly remarkable.</p>
<p>LTS- All prayers and heartfelt wishes from another âinvisible friendâ You clearly have all the tools to win, the smarts, spirit, and amazing attitude!</p>
<p>4Giggles</p>
<p>Oh, Iâm so sorry to hear this, lts.</p>
<p>two thoughts: </p>
<ol>
<li><p>Since you trust your oncologist, maybe he/she can help you sort through the recommendations of other doctors re: meds, etc.</p></li>
<li><p>At the very time that there is the least to laugh about, laughter could be your best friend. So if there are people, movies, books that make you laugh, that could be the best anti-anxiety medication possible.</p></li>
</ol>