Support for LateToSchool

<p>fencersmom said her family had been throwing up all last weekend…</p>

<p>Oh LTS, your own shock at getting sick takes me back 20+ years…when my oldest was sitting in his high chair one day, in the kitchen, eating Cheerios, one at a time… and all of a sudden, he threw up all over the high chair tray… he had never done that before…and the look on his face was one of total amazement…like "WHAT was THAT? He just was stunned… that is how I think of you…your body was telling you to wait, stop and rest because it knew something big was a coming!! I am glad you were in the comfort of your own home when so physically sick. </p>

<p>Mental health days work for me every once in a while…and my work benefits from the interlude cause I do continue to mentally process… so, I choose to know that I have earned some time to do what I need most… I have always felt that it was ironic that when I have been home ill, I was too ill to enjoy the downtime. Many times I have wished for a day in bed to read…but, when ill with a bad flu or whatever, I am too sick to read. That always frosted me a bit!! Best wishes for a satisfactory visit with your doctor.</p>

<p>I’m sorry you felt sick today, LTS. I hope that tomorrow’s treatment goes twice as fast as expected and sets you on the proper course. Good luck with tomorrow’s calls and client dealings. You are an inspiration to me every single day.</p>

<p>I am so glad you got 48 hours to explore your options and feel resolved to the course of action. </p>

<p>Remember, you are still way ahead of the game, in that you were so fast getting to DC. Lots of people would still be going over the films and reports in Miami right about now…</p>

<p>Crossing fingers, & toes for you and hoping for healing.</p>

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<p><a href=“http://www.ncsdf.org%5B/url%5D”>www.ncsdf.org</a></p>

<p>I will mark my calendar as well and celebrate along with you, not as a cancer survivor but as a friend, admirer and supporter of one!</p>

<p>Sending prayers and wishes for a day filled with purpose, new treatment plans and moving forward.</p>

<p>Best to you!</p>

<p>SBMom the films and reports in Miami - I cannot seem to erase from my mind the moment the oncologist said “good news…” etc., and then I asked to see what he was reading from, and, that report did NOT say any such thing…it’s like a nightmare that won’t stop playing in my head, the same film keeps rewinding and replaying and I cannot seem to shut it off. </p>

<p>In any event I am not sick today, for which I am very thankful; have had several meals already. That tells me my immune system still has some ability to raise a defense; something is working. </p>

<p>I also discovered that a trial of great interest at MSK is opening at Johns Hopkins in three weeks, so, closer to home and perhaps just in time. So I will take this to my appointment this afternoon as well…</p>

<p>It’s astonishing how aggressive and how much of an advocate one must be in this situation. I always naively thought one went to the doctor; the doctor had the answers, knew all of the resources and made things better. I only found out about the JHU trial opening by the sheerest of accidents, thanks to an email volley I’ve been engaged in all weekend…</p>

<p>What happens to the people who aren’t questioning, reading, emailing, calling, researching, ready and able to move their lives 1,000 miles away at a moment’s notice? Scarier still, what happens to people who face this all alone and who do not have anyone to help them? </p>

<p>Why does healthcare have to be this way???</p>

<p>It doesn’t. The problem, I think, is that, by the time most of us find out about the problems, we are in no condition to advocate for a patient-centric system. Also, we, the consumers in the system do not have expensive lobbyists working on our behalf.</p>

<p>Please get better and fix this for the rest of us. No pressure…</p>

<p>^^^Because even though many doctors might think they are godlike … and many patients trust them as such … everyone is a mere mortal. I don’t think any doctor sets out to do what has happened to you. Unfortunately, though, real people do get hurt because no one knows it all or can do it all. Your case illustrates why we can’t just trust that someone (even a doctor) knows it all. I agree that it must really be awful to not know what to do for oneself or how to do it … or to not have any help in the midst of it. The best each of us can do is contribute whatever we can to help. Some of us can provide support (like the amazing folks on this board), some can advocate for improved training or laws, some can reach out & help a patient, etc. One by one, we can change the world.</p>

<p>That’s my soapbox speech for today.</p>

<p>I am so glad you are feeling better today.</p>

<p>Mafool, you hit the nail on the head. The oncology nurse who administered my chemotherapy in Miami told me I was the first patient she had (in many years of experience) who asked to see every single blood count report, asked how to read and interpret a CBC report, information on what it all meant, how diet impacted, documents all all dosages of the chemo, the printouts of all the information on the drugs, etc.</p>

<p>She told me everyone else was too sick to care, or, they just didn’t see how they could work in partnership with their doctors, or they just didn’t want to. She said it was like “oh, well, I have cancer, well, I give up…” etc. </p>

<p>Kelsmom, I do not think my doctor was being intentionally negligent or misleading. I seriously believe he was motivated out of goodness - I believe he wanted it to be true so badly that he reinvented reality in real time; perhaps he so very badly wanted to be able to give me good news that he simply created it. What’s scary (according to my “research” and talking to other cancer patients and caregivers) is that a majority of people would not ask to see the report, and would go home thinking they were nearly cancer-free.</p>

<p>Hi. I only posted once on this thread but I read it every day. </p>

<p>Regarding the nightmare scene that’s playing over and over in your mind, you might want to consider dictating or writing the whole thing in detail. Sometimes our minds “rehearse” things (even bad things) because we know they were pivotal moments in our lives and, on some level, we don’t want to forget them because they will be important in the future. If you write it all down sometimes it will enable you to be better able to say to yourself when it surfaces, “Self, that is all written down in my blue journal. I am going to think about something else now.” In fact, you can compose a list of things you want to think about whenever you have a moment.</p>

<p>It does sound odd when I type it out, but it can be effective. {{{HUGS}}}</p>

<p>LTS,
I have always gotten surprised looks when I’ve asked for reports, too. I have a notebook filled with them. At one point, I was even graphing my numbers on Excel to look at trend lines. This has been a good reminder to get on the horn and find out about getting my newest numbers. I’ve been told over the phone, but a piece of paper in my hand gives it a bit more reality (and a visible target to fight!).</p>

<p>Some doctors just don’t know how to tell a patient things aren’t what we hoped. Even oncologists. Marjorie Williams’ book The Woman at the Washington Zoo, in addition to her wonderful personal profiles and interviews, spends the last third of the book describing her battle with doctors following her Stage IV liver cancer diagnosis. Hint: she fired docs, read reports, fought like hell with them and didn’t hesitate to find docs who would offer hope and treatment. She was given 3-6 months; she got herself four years.</p>

<p>My internist sent me to the ER for a CT scan after getting my CBC report. She called me at work, said I had the highest WBC she’d ever seen, and sent me off “for a couple of tests.” She gave me no inkling anything was seriously wrong, nor did she suggest that I might not want to go to the ER alone. But that’s where I was dxd – by a 30-year-old ER doc who announced, “Hey! You have the good kind of leukemia!” to me and the patients in bed on either side of me. (I must have made his day – I was a zebra!) I didn’t realize it then, but my internist HAD to know I had leukemia when she saw a WBC of 143,000. The only question would be which flavor.</p>

<p>If you can, take whatever you feel about that doctor and use it towards your own battle. Whether he’s a good guy, a bad guy, whether he makes you angry or whether you want to carry the hope he had for your improved health – take it and and use it to help yourself gird for the coming battle. If you can’t, that’s OK. Then just let him go.</p>

<p>I remember waaaay back in 1973, admitted to the hospital at 19 years of age for a neurological work up, I asked to see my brain scan. I didn’t have any belief that that I could interpret it, but I wanted to see the image of my brain. You should have seen the furor that my request created! That evening, the Grand Neurologist appeared at my door and asked me, “Don’t you trust me?” I did see the scan, but, my, many feathers were ruffled.</p>

<p>The following evening, I was informed that I would be having an arteriogram in the morning and not to worry, but one of the possible side effects was a stroke. I was a healthy 19 year old woman who was in because I was passing out on occasion. (Turns out I had low blood pressure…but no one noticed.) No way was I going to risk a stroke, so again, I upset all sorts of apple carts by checking myself out that evening. The nerve!!!</p>

<p>I really would have thought that things were better by now. I am so discouraged that it is not.</p>

<p>CountingDown: such wise advice. You had me angry at your internist too. Good that you know how to battle, too.</p>

<p>Mythmom,
Thanks. My kids were 10 and 11 at the time. NO WAY was I going down without a fight!</p>

<p>MaryTN, that sounds like great advice - to write down those experiences that become recurring tapes in the head. I have a few haunting memories I’d like to get rid of and I’ll try that. I’m sure LTS is right that the oncologist had only the best motives when he announced the good news that wasn’t, and I’m sure he would be distraught if he knew how that mistake was living on. But the important thing is that you didn’t allow the mistake to stand, LTS, and you quickly discovered the truth and took action.</p>

<p>Isn’t it strange how so many medical professionals resent demands to see information about our own bodies?</p>

<p>I’ll be eager to hear how this afternoon’s appointment went, LTS.</p>

<p>Oh, my. Another very difficult day. I went to my appointment; nothing good came of it except that perhaps my information is more sharply refined. </p>

<p>I presented my case for trying a different combination of chemotherapies and I described the trials with Topotecan that I know for a fact are open, including the new one coming to JHS from MSK in three weeks time. I had with me a file five inches thick, complete with evidence of others who I know have gone on to platinum based chemos following their first chemos, etc. I explained that the goal was that I wanted to keep my options open; that I saw this as a marathon, not a sprint, and so I wanted to use my options strategically. </p>

<p>He wouldn’t even consider it. Topotecan is the standard of care, period. It wouldn’t be sound medical practice to do anything different. </p>

<p>Sorry, but I know that’s nonsense, it’s done all the time. I have read everything there is to read on small cell, including case histories, and I know for a fact that people often have other chemos and sometimes never even get to Topotecan. I told him this (in a more diplomatic way - I didn’t tell him it was nonsense of course) and offered him the documented examples. </p>

<p>He then said there would be exclusionary issues in those trials anyway. I told him there weren’t; I’ve already checked, and verified, and I had those documents with me as well. </p>

<p>He asked me if I wanted to get a second opinion; I said no, there wasn’t time for that at this point. So we went ahead and rescheduled the chemo to start next week - I agreed to this because I have to do something, and I needed a fall back position just in case I had no other options. </p>

<p>I asked him about the oral version of Topotecan, and he said that it’s not available in this country. I know for a fact that’s not correct; I know people who are taking it. It’s called Hycamtin and the FDA approved it for small cell a few months ago. (I didn’t bother to tell him this though - there seemed to be little point in it.)</p>

<p>I asked him about overall treatment and his intent to treat me aggressively. He said that if this were small cell limited, a potentially curative situation, sure, but, this being extensive, palliative care was his intention. He doesn’t even think remission is a realistic goal and holds to his original six month prognosis. He actually ended the appointment with “I need to get going, to see other patients, I cannot sit here and have the same conversation with you that we already had last week”. </p>

<p>So, I now know that I have to find another doctor. Regardless of the gruesome statistics, I cannot continue this battle in partnership with a doctor who has already decided that I’m going to die of this: if that’s his mindset going in, then the outcome could become self fulfilling. But I also cannot work with someone who tells me I’m dead already, and oh by the way he is in a hurry. </p>

<p>So, on my way back to my office, I called the original doctor, the head of the lung cancer center, who referred me to him, only to learn that he is out for the next ten days, he & his wife just had a new baby. Could I get any luckier?</p>

<p>His assistant had one of his colleagues call me back, and I explained the situation, and, I explained how I found it troubling to try to work with someone who already had me counted as dead. This doctor agreed that I had a right to be very aggressive, especially considering the seriousness of my situation. He is going to call my doctor, and then perhaps find a different doctor for me to work with, either within the practice or elsewhere.</p>

<p>Am I missing something here? Am I just having some sort of a problem accepting my fate? Or in denial? Should I give in to what I’m hearing? I’m not understanding why this is so very difficult…</p>

<p>NO! You are extraordinary person! You just happen to be running into very ordinary doctors. I really have faith that an extraordinary one will come through soon. We know they exist! Hang in there, just a little more. Keep searching.</p>

<p>Have been through this with my asthma. I know time is of the essence, but it was when I couldn’t breathe as well. </p>

<p>Hold out for someone who really wants to fight, the way you do. You will find him/her. I really believe it.</p>

<p>Also sorry you had to go through this with someone who treated you like you were wasting his time while telling you you had so little of it. Yuck!</p>

<p>LTS, regarding the scenario that replays in your head. Last year, when a doctor verbally abused my kid right in front of me after being negligent, I did the same thing. It replayed constantly in my head. I had felt so blindsided in the moment that I had to keep retelling the story to actually make sense of it. I told the story over and over again until I no longer needed to. I wrote a letter that I never sent saying everything I wanted to say. It did help. It’s like witnessing an terrible accident or a trauma – when we had a major earthquake in our area, I noticed everyone needed to tell their story over and over again - their own trauma retold until it was incorporated into their life story. I think that’s normal whenever a huge and unexpected trauma occurs, which your situation was. You replay it trying to make sense of it and gradually incorporate it into the rest of your reality.</p>

<p>LTS, I am so sorry you had another bummer day. Do hold firm to your goals, though. What do you have to lose by giving it the best fight you can? And you have a lot that you could potentially gain. </p>

<p>I too have run into the “standard of care” scenario/argument. If the standard of care were always followed without question, there would never be any progress! IMO clinical trials provide the best options for cases such as yours. (OK, full disclosure here - I have zero medical training and was a lit major in college LOL! So please take that from whence it comes.) </p>

<p>But I do believe that patients who are willing to dedicate the time and the analytical skills to researching options may come up with some suggestions that doctors, who are often so very time-pressed, do not have handy in their bag of tricks. </p>

<p>There IS a difference between denial and wanting to explore every possible treatment option, and I think you know that well. I hope you are not too discouraged to continue your fight for every chance you can have. Remember, that is exactly what Randy Pausch did, and he has gained considerable time over what had been projected. He refers on his medical update page to his “bonus time” and boy, does he seem to be making the most of it!</p>

<p>Can you be seen by someone at MSK or JHU within the week? (If anyone can, it is you!)</p>

<p>The thoughts of many will be with you.
Remember, it is always darkest before the dawn.</p>