Elaine

Well, here's a toast to the end of the toasting of your brain!! Thanks for sharing your ODDyssey (intentional misspelling)! I think you should hang the mask in the gallery. Or give it to an artist who does collages--I've seen some really neat ones with "found" objects. I wish for you the happiest of holidays and a healthy New Year! love and fortitude elaine

Santa has a middle name and it is NED. Glad to hear this great news! elaine

I can only imagine how you must feel. Keeping you and your son in my thoughts. love and fortitude elaine

Good to hear from you and VERY glad to hear you are stable! Lately when it's cold and gloomy I turn on the Travel Channel and hope to see some nice warm spot I can visit in my head. Try not to let winter get you down. I have lived up north and I know how long it sometimes seems before spring arrives, but it DOES arrive! Happy Holidays! love and fortitude elaine

Angie I am glad to hear your Dad is up and around. Prayers for your dad and uncle--and your whole family. elaine

Thanks for the HO HO HO. Your Faith is so lovely. I am off in a day or so to see my neice's children, ages 3 and 1. They sure do bring joy to the season. elaine

Curtis Thank you for your wise beyond your years letter. I can't read it without crying but also seeing the reality that life does go on. Keep learning from your Katie. She is your gift. May your holidays bring you joy. elaine

Jane, Just want to let you know that you have been missed. I hope things get better for you soon. There's a lot on your table and you are a person who feels so deeply. But you are also very strong. Your strength will carry you through. love and foritude elaine

It's good to hear from you and that things are beginning to look up. I know you miss your parents, but like you said they are together. Thank you for the Christmas wishes. love and fortitude elaine

Kim I can really feel the hurt pouring from you. Family dynamics can be so difficult, and the holiday season often brings those pains to the forefront. Is there any way you can speak to your mom about this? Can she speak to your brother? My two "babies" have grown somewhat apart over the years. And I know that one thing I want so desparately is for them to hold onto each other and stay in each other's lives. I can't imagine that your mother doens't feel the same way. I also want at least one of my brothers to step in and be there for my kids, but I doubt that will happen. I just pray my illness doesn't add any more separation to my family. I wish the same for you and yours. love and fortitude elaine

Ginny Thank you so much for your continued support. I know it must sometimes be difficult to come here and be reminded of your own loss. I know Earl wants you to find joy in every day. love and fortitude elaine

So sorry Andrea. My best to the family and may they find comfort in their memories. elaine

Cyndy, I am so saddened by Tim's passing. I am glad it was peaceful and that his family surrounded him. May you and your family find comfort in your memories of your dear Tim. elaine

Cindi I agree that it shouldn't matter to anyone if a person wishes to change Drs. But if you type in "difficult patients" in Google, you will get over 4,000 hits--there are courses Drs take to learn how to handle "difficult patients" and how to spot them early on, and how to get rid of them. Many of the articles talk about ways to turn difficult patients into "good" patients. Some of the articles even talk about how sometimes it is the Dr. who is making things difficult and give advice to Drs. Glory Be! There are whole lists of nicknames Drs give to patients--horrible names. One of the attributes of "difficult patients" is patients with a terminal illness. That alone can make a Dr see a person as "difficult" especially if the patient has seen several different Drs, which is always suspect, it seems by the things I read. The one thing that is evident is that it is the patients, sometimes very sick or emotional people who get the label, and thus often the blame. We all know that there are "Difficult Drs.", but there are no courses for us to take on how to deal with them. Some of the articles focus on patients who are likely to "slap a lawsuit"--I would like to know where the information is that will tell me what Drs are incompetent and how to protect myself from those Drs. People with the so-called "power" get to do the defining. I do care about the label. I don't want that label dictating what a Dr does or feels about me--as that definately effects the care they render. But, maybe some Drs are more "careful and thorough" with "difficlut patients." They ought to be that way with ALL patients. Lisa, no one puts a stigma on a parent with an ill child who visits many Drs--it's almost required behavior for a parent if the child seems not to be Dxed correctly or is not responding to Tx. Sheesh, they make made for TV movies about that! But for adults--especially women, we get labels. For me, it was best to address the issue up front, but not everyone will want to do that. It felt right, because one way to a counter a label and the discrimination that goes long with it, is to redefine and use the word from the aspect of the one who is labeled. In my case, I defined "difficult" as being a patient with some brains and a new found intolerance for BSing around (not the words I used). elaine

I know we aren't supposed to reply on the Ask the Experts threads, so this is in response to Fay's question there if anyone needs to know the context of what I am writing. I was recently called "difficult" to my face by the medical director of the clinic where my second PCP, "Dr. Skinny" is employed. I know what a slap in the face that is. I was called difficult because I questioned the Dr. (and who wouldn't if you have been following my recent posts), spoke to my HMO about her (which caused them to investigate) and demanded I be allowed to leave her care. I was also accused of Dr shopping since Skinny was my second PCP since DX. When I got my records and hand carried them to who will become my new Dr., there was nothing in the reports that indicated that I was "difficult." --however, the first words out of my mouth to my new Dr was this" "I want you to know that I have been called a "difficult patient." She laughed (thank God!) and asked why. I told her. Because I felt at ease enough to tell her and she could obviously see my distress, I think she is one of probably many, "right" doctors for me. I just happened to find this one. I guess my point is this: when a Dr sees that a patient has seen other Drs, and several other Drs over the past months or few years, I think they will automatically think "difficult", so I think that a person should just address that up front with any new Dr. It gets that out of the way, so to speak, and if the new Dr. does not seem empathetic to the situation, then I say go somewhere else because that stigma might be there, regardless if it is unspoken. Further, when I saw all my records, I saw that the Drs reports did not adequately reflect many things. thus I prepared my own chronology, which my new Dr gladly accepted as part of my record. Now, my troubles aren't over, not at all, but if I can just bear it out until Jan 1, then I will feel at least some confidence that I have a Dr who will view me as part of the team. When I move, I will have to start all over, but I will follow my own advice until I find a Dr who I can trust. I know Dr. Joe says that he doesn't have preconceived notions about patents who transfer to his care, but I think that many Drs do and if not consciously, then subconsciously. I think it can and does effect they way they respond to a patient. Like I told the medical director, she can get my records from birth and see that I never switched Drs unless I had moved (once I changed Pediatricians for my kids), and that was not because I always LIKED my Drs.--but I did trust them and felt I could speak to them adult to adult, human to human. What I found here was not in any way human to human. I wonder if it is the stigma attached to lc, that made the Drs, and nurses to a degree, treat me as they did. As a side note, I did find that some earlier records from last year were falsified--to the point where things were crossed off, which I think is illegal and Xrays have "vanished." It does happen. I don't plan to outlline what I think would be the best treatment to anyone. But I do plan to make sure that all options are covered, including no treatment. All I can say is "THANK GOD" I will no longer be in an HMO in a month or so. It was and has been hard fighting on both levels. elaine

Thank you so much for your response. I don't understand the following paragraph very well: They(CT) can't see the inside of hollow structures that well but once their have been a few branching of the bronchial system, the hollow tubes rapidly become microscopic anyways. Virtual bronchoscopy has few advantages over a high resolution CT scan except for the ability to see the interior architecture of the larger bronchi. The first sentence I don't at all understand. In the second, what are the advantages over HRCT? Thanks again. Elaine

Sorry I am late here, but I have been missing posts. I hope Bob has found out a little more about what is causing the pain and that it is being treated. Well, you need to stay on your feet, Nell! Quit trying to walk on your knees! Seriously, I hope you are healing nicely and that you have happy holidays planned. love and fortitude elaine

To echo Peggy, I, too, have been reading your posts each day of your journey. I haven't replied much to them, but I do want you to know how inspiring you are! Your strength and attitude are amazing. You fought hard for this and you are fighting hard through it. I thank you for being here for all of us and hope you find the support here you need, too. love and fortitude elaine

http://www.news-medical.net/?id=6430 One in three smokers or former smokers screened for lung cancer at a baseline and one year follow-up visit using a recent advance in computed tomography tested positive according to a new study. Of those, 12 percent had lung biopsies, and 7 percent were diagnosed with lung cancer. The findings, along with detailed characterizations of practiced follow-up patterns, appear in the January 1, 2005 issue of CANCER, a peer-reviewed journal of the American Cancer Society. Low dose spiral computed tomography (LDCT) is currently being evaluated as a more effective alternative to chest radiographs for lung cancer screening through the National Lung Cancer Screening Trial (NLST). LDCT can identify small lesions than x-ray, however, studies have yet to show any improvement in lung cancer mortality using the test. Paul F. Pinsky, Ph.D. of the National Cancer Institute in Bethesda, Maryland and his colleagues reviewed medical records pertaining to the follow-up of more than 1500 current or former smokers who received LDCT as part of the Lung Screening Study, a multi-center pilot study testing the feasibility of a large-scale nationwide trial. The researchers say 522 were found to have abnormal lung findings. Of those, 12 percent underwent biopsy, 55 percent had a follow-up CT scan but no biopsy, 12 percent were compared to prior x-ray or CT scan, 4 percent had only a clinical exam, and 3 percent received no follow-up. A total of 37 of the 522 subjects (7 percent) were diagnosed with lung cancer within a year of the first positive screen. The investigators found that only a minority of subjects received a diagnostic work-up according to published algorithms. While biopsy was less likely the smaller the nodule size, surprisingly, the more positive LDCTs the radiologist identified, the lower the rate of the use of biopsy for diagnostic follow-up. Also, few subjects received follow-up CT in the time commonly recommended for nodule size. For example, only 11 percent of subjects with 4-9mm nodules and 24 percent with 10+mm nodules received a follow-up CT within the recommended 4 months. In describing the patterns of diagnostic follow-up for people with abnormal findings on LDCT, the authors conclude, the "data may be useful in estimating the potential burden and cost of CT screening and in evaluating whether practitioners are generally following reasonable procedures in their work-up of positive CT screens."

http://www.news-medical.net/?id=6495

I am working on an article, well, mostly today I was thinking about it, which is a kind of work. Anyway, I read that up to 95 per cent of cancer begin in the lining of the bronchial tubes. Earlier you told me that CT scans aren't reliable as to masses in the respiratory tree. So,,,,,, my question is this: Mighten there be a better screening for LC than a CT? Maybe one of those newer bronchosopic (is that a word?) procedures such as virtual bronchosopy or one of the ones that put some kind of substance in the tree that highlights dysplasia? Or is it that most masses begin further down in the tree and so they more quickly spread to the lung? What would be the best CT slice to best view the airways? Would it or should it be with contrast? Thanks elaine

Good point. I never thought of steroids having not been on them but having heard so much about them, I should have. But I also think that if his mind is racing and it most likely is, he is doing what he THINKS is the best thing for now. As for later, he may have entirely different thoughts. love you lots. elaine

Cyndy I am so sorry, but I keep hope alive that once Tim's pain is managed he can regain strength. Pain knocks so much out of person. I wish you peaceful days ahead. I hope you know how many friends you have here, and I for one wish I could be closer or do more or know the right thing to say or do. Just follow your hearts. love and fortitude elaine

Betty, I saw this yesterday, and I just stopped cold...I kept asking my feet for a little happy dance, something. But they just kind of stood there, barely holding me up... I bet yours were and maybe are a little reluctant, too. But, I know that you will dance, more happy dances. I will too, in spite of myself. You are so, so dear and so, so strong. It kinda sucks, being thought of as tough, but it's kind of invigorating, too. I am rambling, I know. But you are ALWAYS in my prayers. love and fortitude elaine

So you have the proteins!!!! Now all you need is the vegies, the grains, the fruits, and in my opinion the desserts, and you have a whole meal!! I think it's great that you are doing this. Stage I or is it Stage II trials are so important to cancer fighters of the future. You are paving roads, Cheryl, and may you build a terrifically long road for yourself, too. love and fortitude elaine