<p>“Local knitters use talents to help cancer patients, survivors”</p>
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<p>[Daily</a> Progress, Jacksonville, TX - Local knitters use talents to help cancer patients, survivors](<a href=“http://www.jacksonvilleprogress.com/local/local_story_068220535.html]Daily”>http://www.jacksonvilleprogress.com/local/local_story_068220535.html)</p>
<p>Garland, lol, I don’t think so. I am just a rulebreaker I think and so perhaps that is what makes me a little different? I just don’t accept predictive outcomes of challenging situations, and all my life I have fought really hard to overcome various sorts of obstacles. Years ago, my mind just simply rioted against the concept that the daughter of a homeless, penniless single mother and high school drop out was doomed to poverty and failure. Today, I cannot accept that I can be so easily defeated by such a cowardly disease and so perhaps my mind riots in something of the same way, and my body follows (???). I’m just guessing…</p>
<p>This morning I am scheduling major business commitments for the next couple of weeks, even though the cyberknife treatment is going to make for some interesting days. I am very much afraid of these sorts of medical procedures, though I refuse to waste any energy worrying. It’s going to happen; it’s going to be very scary for me and the only way out is through. </p>
<p>Each day when I wake up in the morning, I do not feel well, and sometimes it is a different sort of feeling poorly each day. Today it’s sort of a general chemo spaciness, for lack of any other way to explain. But I notice that when I take those first very difficult morning steps - check blackberry for urgent stuff from other time zones, get into the shower, get moving, get dressed, get out, head for the metro, the next thing you know, I am almost close to normal again, and happy again. </p>
<p>I feel terrible, horrible, for people who are suffering from major illnesses and who are in dire situations. Cancer seems to have a way of finding whatever is the achilles heel in one’s life, and exposing it, and forcing a clean up. For me, it has been the forced realization of how so many people are suffering so horribly from not only lung cancer but other serious illnesses. I am lucky in that I do not have the financial, personal support or societal challenges. But I am the exception. I am very, very lucky; even if - worst case scenario these are to be my last days on earth, at least I am not spending them under tremendous duress. I am also very careful to thank my supporters profusely. So many people are suffering from these sorts of diseases and they are at the mercy of their insurance companies, their employers, and other immovable structures that I am certain impede any possibility they have of recovery. I am not so sure people die of their diseases as I think perhaps they actual die of the collateral stress.</p>
<p>Tobia-e, do you think so? I am sometimes very disappointed in myself as a person. I wonder where my brain has been for the past 20 years. This morning, coming off the metro, without needing to look more than three feet in any one direction, I observed a person in a wheelchair, a person half my age walking very slowly with the help of a cane, a person with a seeing eye dog, and so on. </p>
<p>Comparatively (although I was very short of breath) I still climbed the three escalators rather than ride. </p>
<p>I am amazed that I have overlooked all of this, and for so long…</p>
<p>Epistrophy, thank you again, as always, and especially for not leaving me during the trial. I am glad it is going well. I am also puzzing over the recent arrest of Viktor Bout - that seems like an almost impossible prosecution…why would they bother?</p>
<p>LTS, perhaps the morning difficulties are not new, but before now you have been distracted by your enthusiasm for your day and plans. I used to leap out of bed in the morning, ready to go, but now as I get older, I have to talk myself into it, knowing that as I move I will feel livelier. Just a thought. </p>
<p>Glad you are joyful with your best realities, LTS, just as we are grateful that you share so completely with us. Would that we were all getting our jollies in other ways!!!</p>
<p>LTS…do you remember before you were pregnant…did you ever notice pregnant people? I didn’t…but boy, when I was, I thought I saw other pregnant people everywhere…once I had my kids…pregnant people disappeared…it is that way with many things… we only have 100% of energy…we allocate every bit of it every day…when we are feeling poorly, some of the energy has to go towards dealing with the illness… perhaps you notice some folks because you are just moving more slowly so your able to “see” more…</p>
<p>I will risk passing along an obit from our paper today…the gal who drove our local #5 school bus for both my boys from K thru … here is the opening section that merits a read:</p>
<p>“Despite valiant medical efforts and countless prayers, the ■■■■■■■ cancer took Nancy from us on March 7, 2008. Her soul is liberated and now abides with our spiritual master.” </p>
<p>I cannot help but smile as I think Nancy wrote that first line! And I think she got the last word?? It is soo Maine to phrase it the way she did. I can tell you all that she drove a fast bus…and I totally trusted my babies in her care… so, climb those stairs and tote that briefcase… I think you are seeing exactly what God intends you to see LTS… perhaps that is why he slows us down sometimes?? Just to change our view…</p>
<p>The Lung Cancer Advocacy Summit
May 27-29, 2008/Chicago</p>
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<p>[Lung</a> Cancer Information - National Lung Cancer Partnership. Women. Research. Change.](<a href=“http://www.nationallungcancerpartnership.org/page.cfm?l=Summit]Lung”>http://www.nationallungcancerpartnership.org/page.cfm?l=Summit)</p>
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See: [SI.com</a> - More Sports - Mackey wins Iditarod for second year in row - Wednesday March 12, 2008 12:33PM](<a href=“http://sportsillustrated.cnn.com/2008/more/03/12/iditarod.winner/index.html?cnn=yes]SI.com”>http://sportsillustrated.cnn.com/2008/more/03/12/iditarod.winner/index.html?cnn=yes)</p>
<p>LTS: Suffering these challenges has made your heart open to others. This is the most beautiful kind of compassion. Your compassion for others is what fuels much of our compassion for you. Love is passing through us and then through you to the everyone else suffering. This is the way this process is supposed to work.</p>
<p>And you are noticing these others at just the right time. You had other things to think about that helped to arrive at the place you are.</p>
<p>Since I developed really severe asthma when I was 17 I haven’t been able to climb stairs, or basically do anything, without severe shortness of breath. It’s been a challenge, but it has slowed me down enough to grow in other directions I never thought possible.</p>
<p>My acceptance of other people has just expanded. I shudder to think of the smug person I might have become if no challenges were placed in my way.</p>
<p>There’s so much beauty and love on your thread because of your ability to be the conduit for it. We need this in the world.</p>
<p>Keep going just as you are.</p>
<p>By the way, I still have a killer picture of you in suit and shoes in my head.</p>
<p>Today I will lob in a quote that is one of my personal favorites…
from Emerson…</p>
<p>“Make the most of yourself, for that is all there is of you.” </p>
<p>I just love that saying…it is not about becoming the best… it is about knowing who you are…and doing something with it… we all have attributes and using them is the key… as I wake up and find myself at 54… I like to think about “what to do with the rest of my life” because some of the things that have concerned me in the past, no longer do… I still have concerns, they are just different ones. Some days I don’t make enough of myself, but I have faith and hope in tomorrow… and when I listen to the voice of LTS I am reminded of what humans are capable of when they strive for excellence. It is hard to find…but, boy, is it easy to see when someone lives for it!!</p>
<p>I hope this makes sense…</p>
<p>Maineparent I deliberately avoided noticing pregnant people after I once very enthusiastically, loudly congratulated a friend on her pregnancy and asked about the due date; embarrassingly for me she had merely gained weight. This was 20 years ago but I remember the exchange as if it were yesterday. So from that point forward I have avoided noticing other people’s physical conditions. </p>
<p>Yesterday I had an experience that convinced me once and for all that we just absolutely have to do something about health care - this is simply a disaster.</p>
<p>From the moment of diagnosis, I have researched extensively every single fact about small cell cancer, with a special focus on what could potentially happen to me, and what to expect. Therefore, considering the possibility of brain mets, I understand the concepts of PCI, whole brain radiation, gamma knife, cyberknife, etc. very well. I believe I have downloaded every single complete article from pubmed on this issue and I do not believe there is a resource I haven’t harvested. </p>
<p>So, when the dreaded news came, I already knew what I wanted to do. I had a consult with the neurosurgeon, the radiation oncologist, my oncologist, etc., and we are all in 100% agreement that I am an excellent candidate for cyberknife, and that is what we all agreed, and there was no ambiguity whatsoever specific to this decision and the treatment plan.</p>
<p>So, yesterday, I went for my CT scan, which is part of the staging process. I went in and went along, never in the world imagining anything had changed from our discussions. But suddenly it sort of fell out in the CT scanning room, something one of the supporting nurses said, that suddenly clued me in that I was being staged for whole brain radiation, NOT cyberknife. </p>
<p>The nurses were clueless. They had no idea I was there to be staged for cyberknife. They thought I was there for whole brain radiation staging and that I was just fine with that plan. </p>
<p>I immediately halted the entire process, of course, and, demanded the doctors back in the room, demanded explanation, etc. I was told to hang on, the doctors were looking at the scans. Nonsense, I said, what in the world would make the doctors change their minds in the space of a couple of days, and in the absence of any new scans indicating that the course of treatment should be changed, and anyway why would anyone change anything without talking to me? </p>
<p>I was put off and told to wait, doctors were looking at scans. Just a few minutes. The nurses were nervous. </p>
<p>I confronted and confronted and confronted (I asked over and over and over, who changed the order? how did it changed? why would it have changed from the time of my consult, just days ago? what do you mean you don’t know? who specifically told you to write this on the form, and, when did they tell you to write it? what do you mean, you cannot remember? what protocols do you follow that tell you what to write on a form? when did you fill out this form exactly?..and so on…) and finally was able to force an admission from the nurses that the head of the radiation oncology department ordered whole brain radiation for me. </p>
<p>I wonder if you can imagine my absolute amazement when the next thing that happened was that the head of the radiation oncology department came in together with TWO representatives from the financial office. </p>
<p>The head of the radiation oncology department introduced the two people who were with her from the financial office, and said exactly this to me: “…the thing is, if you want cyberknife, we need to collect a $3,000 deposit. We haven’t had time to contact your insurance yet so we will have to reschedule all this unless you want to write a check for the deposit.” And then she stood there expectantly waiting for me to write a check. </p>
<p>I wonder if you can possibly imagine my shock, outrage, astonishment, etc. The two people from the financial office looked down at the floor; I suspect that they were equally appalled. Certainly they didn’t look happy to be there and wished they were just about anywhere else. And can you imagine that this is taking place with me sitting on the CT scanning bed, IV for contrast dye already in place. </p>
<p>I resolved it in short order; I wrote no so such check; I had my CT scan as scheduled; I am set for cyberknife (unless some scan result indicates otherwise). And, as of this morning, I have the hospital CEO’s office on this, as well as the patient representatives, and a bunch of other resources. Someone is going to answer for this, hopefully before this business day ends. And I am not going to let it go until it has been addressed to my satisfaction. </p>
<p>I can write such a check any time I wish; I am not having any difficulty with resources. And I am a VERY confrontational person - I just simply do not allow people to get away with nonsense around me. And I have no problem approaching a CEO’s office and demanding action, and getting results. There is literally no office, person, power position, etc. that I am intimidated by; there are no barriers to entry that I consider beyond my reach, and I refuse to let these sorts of bizarre situations throw me off course. </p>
<p>But the majority of patients probably cannot navigate their way through this stuff. Health care consumers need serious, 911 level help. No one should EVER be in the position of having a hospital employee demand a check from a patient at the point of treatment, and/or having the treatment plan arbitrarily changed by a hospital staffer who is not a member of the medical team - and then LYING about it. I am guessing that the majority of patients would have written the check as demanded, or, permitted the scan to be rescheduled, and either of those courses of action are potentially very dangerous.</p>
<p>LTS, I just read your last post. I cannot believe the gall of the hospital to have financial people intruding on your medical testing! How difficult was it to get them out, and to proceed? I don’t know where you get the energy from to fight with these people who are supposed to be helping you!</p>
<p>They haven’t had time!! I thought that was the job of the financial office!!! It is shocking that a doctor would stand there and demand payment to continue with your agreed upon plan, and you are right most people would have gone along with them, having been intimidated. </p>
<p>They just don’t know who they messed with:) LTS you keep going!!!</p>
<p>Keep us posted</p>
<p>Northeastmom, the poor financial people had nothing to do with it. Sadly, they were simply present as summoned, by the head of the radiation oncology department. They appeared to be embarrassed and horrified to even be there. They literally fled the room as soon as they could. </p>
<p>How did I deal with it? I was so insulted, outraged, etc. I was already very, very upset to discover that I was being staged for whole brain radiation. I also did not like that my questions were being evaded and not answered correctly. I can tolerate a lot of things but evasiveness and stupidly I have zero patience for. </p>
<p>I am a very direct, confrontational person. I have no problem saying to someone, “I’d like an answer, and I will have that answer from you in the next 10 minutes, or we go see your boss”. My energy probably came from my outrage at being in this situation. </p>
<p>But what about the rest of the population of health care consumers? If this is happening to me, it is happening to other people, and I suspect their outcomes are not as favorable.</p>
<p>4Giggles, I am not sure at all that the head of the radiation oncology department is a doctor. In any case I gave her name and title to the CEO’s office this morning - they will surely address this. The doctor in charge of my case was not present during this. He was almost certainly embarrassed and cowering in his office. The equally confused nurses covered by saying he was “reviewing my scans”, which to me was a transparent lie, because why would he do that??? - a point I pushed over and over.</p>
<p>This thread sometimes makes me very, very happy…sometimes very,very sad. Right now, I’m very, very ****ed off. One thing you left off in your summary of what the majority of patients would do…I believe most of them would not have questioned what was going on at all. They would have blindly thought that they were in the hospital/doctor’s care and believe they were doing what was best for them, not that they were getting care based on $$$$. </p>
<p>I have no doubt that you’ve got the attention of the hospital CEO. I’m curious as to what your neurosurgeon and oncologist team had to say about this.</p>
<p>You’ve got a whole bunch of us (1835 posts so far!) behind you…we’ll be awaiting your triumphant cyberknife stories.</p>
<p>This is so incredulous. I am so glad you are documenting it here - I am learning so much. I am sorry you have to go through this; you certainly don’t need it. And yet, you are right - there are not many who would have handled it so effectively. So perhaps you have just saved this sort of thing from happening to someone else. I know you don’t really need the burden of being a savior right now, but I hope that the selfless effects of your actions give you a bit of satisfaction.</p>
<p>In the meantime, I am so GLAD you made that mistake with your non-pregnant friend - I have carried years of embarrassment around with me for having done the exact same thing, and it is so nice to be in such awesome company.</p>
<p>Your experience is outrageous; but unfortunately such incidents are common in our health care system. Good for you for not being intimidated! </p>
<p>So many cancer patients are suffering from “chemo brain” or other disability and alone and unable to question their health care providers.</p>
<p>I am stunned by this story. It is really unbelievable! The hospital will have a board of directors, and if I were you I would copy them on the letter you are probably going to write to the CEO. Essentially, your medical team (including you and your doctors) was overruled by some pencil pusher who decided to substitute a less-expensive treatment because they did not have a deposit from you, because they were too incompetent to request one? What’s more, you were not even informed of the change of plan? Why are they demanding deposits, anyway, especially from insured patients? </p>
<p>I don’t even know what to say.</p>
<p>LTS and binx…me, too, to a lady working at the bank…cured me very quickly about EVER mentioning a pregnancy, but I do notice and wonder. </p>
<p>LTS, whatever else evolves through your travail, you will have made a difference in the system…no one who has encountered your fury and power will go blithely through the motions and assume they are not responsible and will not be held accountable. You are making a significant difference as you inspire all of us to take on what we must. Thank you.</p>
<p>LTS, if this happened to me, I think (of course I could never really know) I would have been stunned, and paralysed by being thrown off guard like that! My reaction later I am sure would have been tears because of the callous attitudes displayed before me. I really admire your being able to handle this all by yourself! Giving you a cyber hug today!</p>