<p>LTS: Keep your chin up, through the good times and the not-so-good. Anything of the bad stuff you go through will only be temporary. My thoughts are with you lots and lots.</p>
<p>LTS, Iām healthy, but you are wayyyyy stronger than I am. I am in awe.</p>
<p>I am praying for you.</p>
<p>Patsmom, just a note, you were fine to inquire. I wouldnāt have posted the information but seeing these responses I am glad I did and am greatly comforted by all of the posts. I came home from the hospital Friday night one week ago, and I have been lurking but not feeling much like posting. I did read the thread on Randy Pausch (but have not been able to bring myself to listen to his final lecture all the way through - I listened to about 20 minutes of it). But that thread helped me a great deal in that any danger that I might slide into any sort of self pity is stopped cold, thinking about this husband and father with three young children. </p>
<p>Thanks to the moderators for moving the thread, and, Soozievt I will print these out as well. </p>
<p>I do agree that oncologists just have to be a special breed. I am particularly grateful that I found mine. He āgetsā me; we āclickā. We donāt have any āissuesā. We communicate very, very well and for that I am so thankful. He manages to be positive but in a science-based way. He answers my questions. He talks to me in clear, concise sentences. He gives me the facts and the science and while he doesnāt play games or soften terrible news, he somehow manages to serve it to me in a way that does not leave me in a wreck. When I had my outpatient appointment with him this week I left his office feeling as if he could ācureā me with his words and demeanor alone, which I know is ridiculous of course but that is how he makes me think and feel. </p>
<p>I did NOT have the same experience with ANY of the physicians in the hospital, in fact, I got into some situations that earned a warning from a friend of my daughters along the lines of ādonāt fight the doctors, fight the cancerā. </p>
<p>For example, a staff psychiatrist came to see me one morning. He wanted to know why I was declining to take the anxiety medication that had been prescribed, and the sleeping pills. Didnāt I understand that they were there to help me? </p>
<p>So I explain to this man that while this news is, yes, horrible, terrifying, yes I am very frightened, and just so, so, shocked, this is just about as bad as it gets, the only way I can see that I have even the smallest chance to launch a strong battle, fight and win is by facing it head on. That means I am not going to be hiding behind a chemical haze, but, rather, I am going to look directly in the face of this terrifying freight train as it comes at me full speed, and all the horrors it brings, and I am going to face it head on, with a clear mind and both eyes wide open. I see no other way to win. As to the sleeping pills, even if I cannot sleep, I need to pay attention to, and listen to, my body. Sleep will come when I am tired, when I have worn out my mind and my body with the exercise that my oncologist has approved that I continue, and, so far that has worked. I am not going to be on any stupid pills and while I understand that things like chemo have to happen, I am not going to put one more chemical in my body that is not absolutely necessary or that does not in some way fight cancer.</p>
<p>So this man goes away and writes something in my chart, which, I get my hands on and read the next day (there isnāt much else to do in a hospital although you do sort of have to argue with people to get your hands on your chart I discovered). He writes something along the lines of I am uncooperative with medications. So I summon him back to my room and challenge him. I pointed out that what he wrote in my chart did not accurately reflect our conversation. I asked him to correct it, and told him I would be checking to make sure that he did. </p>
<p>Then, I had a similar tangly discussion with the radiation oncologist (staff physician). Because of SVP syndrome (and/or other reasons) she prescribed a steriod. Then, she told me I was stuck on the drug for a long time and would not be able to get off of it. I challenged this as well (when I read about this drug on line it terrified me - I am at a loss as to why she just followed procedure and didnāt consider me, the patient), and, bottom line, as of this morning, I am 100% tapered off the steroids as well. I am on zero drugs and I am o.k. </p>
<p>My oncologist approves, and supports me 100%. I do not see how anyone wins this battle if they just silently sit back and accept whatever they are told.</p>
<p>late to schoolā¦please accept another support message from a Virginian who has always valued your posts. Your LIFE is amazing. You are a creative force and everything in you trumps this disease. Please stay in the conversations here at CC, and keep us apprised. While you fight this most unexpected and random cancer, you will further discover how much you are valued. You are special and your response to cancer will be as unique as you are. We want to hear about what you are thinking and doing.
I am supporting my own sister who started treatments Monday with breast cancer after surgery.</p>
<p>I am very sorry to learn your news.</p>
<p>I so admire your indomitable spirit.</p>
<p>How is your daughter doing?</p>
<p>Adad, thank you for asking, my daughter is doing as well as can be expected under such shocking circumstances. She did return to Miami last month, and she started her new job the same week I was in the hospital. I mandated immediately that while yes this is horrific, and yes this has to be managed, we will NOT allow it to consume our lives and most of all not hers. So I insisted she continue with her professional commitments, and, so, lol, she started her new job on schedule, and then came to the hospital every night after work. In my mind there was no reason in the world why she should have been stuck in the hospital all day with meā¦</p>
<p>I am so sorry. I hope that everything turns out okay for you, and I also hope that you find the strength to deal with this problem.</p>
<p>Tega</p>
<p>LTS,</p>
<p>Iām sorry to hear this, but I suspect that if anyone has the inner strength to fight this and win, it is you. My best to you and your daughter.</p>
<p>LTS-I have always admired your strength and determination and know they will serve you well in the challenges ahead. Keep the glass half full.</p>
<p>Best wishes and lots of positive energy being sent to you and your D. I know youāll be a great source of comfort and strength to each other.</p>
<p>LTS: Count me among those that you have inspired and awed over the last few years. Isnāt it amazing that you have touched so many people in such positive ways by just sharing on this site and here you go again sharing yet another part of the journey that is your life. I do truely admire you.</p>
<p>I believe in the power of prayer, the power of numbers and the power of being positive. Statistics and real science prove these are powerful allies. I will be yet another that has you and your daughter in my prayers daily. We will be your army and fight along beside you as you continue this battle. </p>
<p>I only hope we can give back to you as much as you have already given to those of us who have followed your life these last few years. Onward!</p>
<p>LTS, Please accept my admiration for your strength and courage. Your have been and continue to be a model parent for all of us at CC. I wish you the best and my prayers are with you.</p>
<p>LTS ā hereās a {{{{BIG HUG}}}} from meā¦ the silly lady who told you to bring the cat inside. :eek: Did Jackie ever find somewhere else to live?</p>
<p>Your cancer fighting story hits all of us hard. Would I be so brave and tough? I hope so but just donāt know. </p>
<p><a href=āhttp://www.caringbridge.org/[/url]ā>http://www.caringbridge.org/</a> is a great website for āblogging your illness.ā </p>
<p>Iām pulling and praying for you.</p>
<p>Score: LTS - 2; Doctors Who Donāt Get It - 0</p>
<p>Firing Dr. Pessimist - good, very good
Calling Dr. Chart Saboteur on his (her?) unforgivable chart notes - even better.</p>
<p>You go girl.</p>
<p>It is just as we are all saying. And as you said yourself. If there is a person who can beat this thing, you are that person.</p>
<p>And if it helps to have a posse; we are that posse.</p>
<p>LTS:</p>
<p>You know this. I am writing it again, and writing it BIG:</p>
<p>STATISTICS MEAN NOTHING.</p>
<p>Statistics work for populations, not for individuals. And, by God, you are an individual!</p>
<p>You didnāt know it, but you have been in training for this fight all your life. And you are better armed for the fight than most anyone.</p>
<p>Hundreds of us have your back. If you waver in the slightest, come back here. The collective power of our hugs, prayers, thoughts, etc. will be pouring your way.</p>
<p>Late to school -
I am so sorry to hear your sad news. Please count me among the many others who are pulling for you. You are an amazing person, and the way you have dealt with your illness so far is further proof of that.</p>
<p>LTS - These are some inspiring books re to cancer.</p>
<p>Lance Armstrongās āItās Not About The Bikeā and the sequel</p>
<p>There is an older book by Ken Wilbur about his wifeās bout with cancer. Unfortunately, she doesnāt survive, but it is full of wonderful info.</p>
<p>About the Psychiatrist - Your main doc makes a referral to him for all patients - the Psychiatrist then gets to BILL insurance - Fire him and have it recorded in your chart if you donāt want him.</p>
<p>Latetoschool,</p>
<p>I have admired you for quite a while, and now I am finding you truly awe-inspiring! I was shocked and saddened to read about your medical crisis, but inspired by your responses and actions. Count me among your cheering squad as you swat the bad doctors out of your (emphasize āYOURā) path as you charge ahead.</p>
<p>I echo other posters comments about statistics. But you knew that already. Besides the obvious (except to flung-aside doctor #1) fact that SOMEBODY has to be in those small fractions, the statistics represent the experience of a group of people,most of whom are older and less healthy than you are, certainly less determined than you are, and who lack your talents and abilities, which are already serving you well. I am rooting for you to be one of the few!</p>
<p>I am enjoying the descriptions of your battles with the doctors. I consider myself quite assertive when dealing with doctors, but Iām an amateur compared to you. It occurs to me that if you have the energy and inclination to keep detailed notes, you would have the makings of a wonderful book when this is behind you, one that could be very helpful to others facing disease.</p>
<p>Iāll be following your posts with great interest, and sending you good thoughts, and cursing the gods with Alumother!</p>
<p>MaryTN, thank you for inquiring about JackieO - my daughter was in the process of integrating her into our household from outside (intensive process, not going smoothly); however, once in the ER, when discussion escalated so quickly from ābring me a bottled water from that vending machineā to ābring me my lawyers, my estate planners, my business continuity people, please summon clergyā etc. I had to make a lot of decisions very quickly, and one of those was to divest myself of all minuteau-type issues so I can focus on this larger issue. So JackieO became a part of that; while I was in the hospital my daughter found her a lovely home with two young men that she knows well who are seniors and roommates. They love her; she sleeps in their beds, she loves their indoor carpets; they have purchased for her something like $100 worth of toys and they even now have a place for her on facebook (cat facebook I think itās called???) - this, even though the two young men do not use their own facebook profiles. So JackieO is being friended on facebook by lots of other cats. Does that make any sense to you? LOL.</p>
<p>My daughter asked me if I missed her and I said that I did, however, this is better all the way around and JackieO appears to be in a far better situation. </p>
<p>Thank you very much to everyone who has posted - I do appreciate it and I am sorry if my very responses are a bit disconnected.</p>
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<p>LTS:</p>
<p>Itās great to hear the update on your cat saga! Your responses are in no way disconnected. I enjoy them as I have enjoyed your posts over the year.</p>
<p>I remember your early posts where you described yourself as being tremendously organized in your work but often scatty in personal matters 9i still chuckle over your rental car story). But you seem to be extremely well organized to battle both cancer and doctors. Keep it up!</p>
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<p>LTS, I am sorry to read about your situation. One of my wifeās best friends was diagnosed with terminal cancer close to 20 years ago.</p>
<p>She is still alive and doing very well. </p>
<p>Good luck to you. Iām sure you will beat this.</p>