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Elaine

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Posts posted by Elaine

    Updating the Update WITH AN ADDITIONAL UPDATE

    in GENERAL

    Posted

    After sharing some other things that happened today with some friends on the board, I will fill you in on more of what happened. The talk was over an hour, but here are more highlights.

    When Skinny and I had our talk, I found out that she noticed something in some previous bloodwork, and that, combined with the disabling nueropathy and the unchanged "lesion" in the lung made her think that I might have either osteosclerotic myeloma or POEMS syndrome--or some other of the many rare plasma cell neoplasms. Something about a protein..

    I have looked these up. I don't understand what I am reading, and I don't really understand what she was saying.

    At this point, I brought out my article that showed that hypertrophic Pulmonary osteoarthropy also sometimes presents with parathesias (a type of nueropathy)-- she did not know this. and I think even Dr. Joe wrote in an answer to me that he had not heard of that either.

    She was somewhat taken back with this information. Of course, I cried a little because as bad as POEMS or the myeloma sound, they AREN"T as bad a prognosis as lc. Which is of course, why she didn't want to mention the myeloma until she had something else to back it up rather than a "hunch."

    I did have a sputum cytology. It went to the labs three times and came back with three different histologies. (I only found THIS out about a month ago when I started collecting all the records.)

    I turned down two bronchospies because they would not put me under.

    The Myeloma and/or POEMS are very, very rare. Maybe 700 cases of POEMS in the literature.

    I think she about cried, too, to be honest, because I don't think she wants it to be LC either.

    In the end, I told her that I really, really am getting sicker. SOMETHING is progressing. I know she hasn't seen me except these two times, so she does not know that my performance status has changed from like a 9.5 to maybe an 8, all within the last three months.

    I believe I got her attention. I don't look sick, I guess. Even my husband can't seem to get it in his head why I can walk pretty well some days and not others. Why some days I am in severe disabling pain and other days very mild pain.

    Even Skinny admitted that on my first visit she could not really believe that I could be having such intermittant and extreme symptoms. But what I failed to get through to her that day is that all of this has been intermittant all along. But now the excacerbations are disabling and on the not so bad days, I am not at all what I was.

    For example, at the beginning of August, I went away for a long weekend with extended family. NO ONE saw any signs of me being ill. I did have pain that weekend, but probably adrenalin let me function through it and I consiously manipualted a few things so as to minimize having to do some heavy distance walking.

    I can't do that now.

    I heard of a great pulmonologist, who is really booked up. She said she would try to get me into him and that she was sure that if needed, he would listen to my concerns and fears about the bronchospy.

    She did admit that the likelihood of it being lc was probably 100-1 in favor, (especially in light of the article I brought her) but she still thinks something isn't adding up. I think she now realizes that I am for real with what I am telling her.

    Like I told her, 100 to 1 its LC, we better move on that ratio because SOMETHING is progressing. SOMETHING is causing the extreme fatigue etc. The "lesion" may not appear to be growing, I said, but who knows what it's throwing and what place in my body might be catching it. Maybe it's growing behind something?!

    We talked about a lot of other things in my records, and she actually took a detailed and accurate account--clearing up some inconsistencies I had noticed. She brought to light other things, of a more medical nature.

    I at least feel I have a relationship with her. Nothing I will miss when I leave here, but I don't dread having to see her again. I wish I didn't have to see her, but I know I do. It beats getting all my medical care at the Urgent Care Center, which is what I had been doing for some time.

    It was a rough day because for a couple hours, I DID have this incredible hope that I don't have LC. I think reality is sinking back in and the despair has hit. But for two hours, I thought I had a reprieve.

    I know this is long, but I tried to hack it down some...

    elaine

    CTs for Charlie

    in MEMBER UPDATES

    Posted

    Tina

    I am praying for nothing but the "all clear" for Charlie.

    Please let him know how thankful I am that he is participating in this trial, not only for him but for the untold thousands who will soon face this DX.

    love and fortitude

    elaine

    Updating the Update WITH AN ADDITIONAL UPDATE

    in GENERAL

    Posted

    Ok more weirdness, but I did find out why she hasn't ordered scans.

    My onc or maybe my last PCP (no one is sure yet) billed for scans in August--scans I never had. Haven't gotten to the bottom of it, but I can assure you I will! The nerve! Anyway, she assumed I had had scans in August and that no one had bothered to send them to her. A lot of assuming going on.

    Sooooo she didn't order any since the HMO won't pay for Cat or Pet etc except for every 6 months unless there is an indication they are needed. Since the chest xray showed little if any progression......

    I was able to get one of the articles printed, I did show it to her and we did talk for over an hour. I can't say I like her much, but I don't dislike her to the extent I did, which is saying something.

    I think she has figured out that she is not dealing with a dummy AND that I am also smart enough to know that I don't know a fraction of what she knows--. She is the doctor and I am the patient who happens to know some things, and until I am unable, I am also the advocate for myself.

    I got my Rxs, and even she shuddered a bit when she heard about my dealings with the lab. I have scans set up for next Friday, assuming the HMO stuff gets dealt with--today being a holiday didn't help matters.

    She assured me she would let me know about the bloodwork, and I assured her I would not let her forget to let me know.

    My husband isn't nearly as excited about the KC job as I am.... To me, it makes sense, at least for now, as it will give him all kinds of flexibility that a regular job doesn't offer-- and it keeps him off the road.

    Maybe he's in denial. Maybe I am over-reacting. Hard telling.

    You guys are the greatest!

    elaine

    PS: I don't want anyone to think the visit wasn't entirely without its moments of absurdity.

    Since they can't get a vein in my arm, they took blood from the top of my hand--then wrapped my hand in brown gauze--so tightly that my hand was turning blue--which Skinny DID notice--frantically tearing off the gauze, asking me how I had sprained my hand--I told her about the bloodwork.

    Immediately, she leaves the room, returning five minutes later proclaiming that she can't find the results of my bloodwork--that had only been drawn minutes before, some of which has to be sent out! She turns red looking at the heap of gauze she had just thrown in the trash.

    And yes Frank, both of us, Skinny and me, are blonde. Thank God for the African American nurse who pointed me in the right direction after I left the examining room, or else I might still be wandering the bowels of the clinic--

    Hopefully, Skinny made it home, too.

    Quick Update

    in GENERAL

    Posted

    My husband can start the other job whenever he wants. He is a little worried about it since it is strictly commission and no benefits, but we do have our COBRA, which by the grace of God our HMO does cover the KU Med Center and its Drs. He would be an emoployment recruiter. Anyone need a job?

    I am not certain what he will decide.

    I am headed off to the Laurel and Hardy of medical "care."

    I planned to take my articles, but God has other plans as my printer is out of ink.

    I don't know when I will be able to report back, but I will take someone's phone number just in case. Blood work this morning and then appt with Skinny at 11:40.

    I am feeling a bit shaky since I am used to eating constantly. lol. Add to that my nerves and .....

    Thanks for all the best wishes and prayers.

    elaine

    Has Anyone Ever Done This

    in GENERAL

    Posted

    I have an appointment with my PCP "Dr." tomorrow AM. She is not going to be all that happy to see me since the results of my bloodwork aren't back--but I don't care about the tests she is running, I CARE about my lungs.

    For some reason she is obsessed with finding out why I am having the nerve pain and the parathesias--I found a recent article on the Hypertrophic Pulmonayr Ostroarthropy I have that lists parathesias and one that lists buring pain.

    Has anyone ever brought medical articles or info to their Dr? How offensive is this for me to consider doing it?

    I just want to get on with greater things. I don't know why the mass in my lung has shown little if any growth, but I do know that I feel worse and I breath worse too.

    Any help would be appreciated.

    elaine

    Treatment after surgery

    in INTRODUCE YOURSELF!

    Posted

    From my understanding, the research is showing that chemo after surgery is showing a reduced chance of recurrance.

    I am sure several people on here will reply.

    Just a question though: Did the surgeon remove "spots" from BOTH lungs as your profile reads, or did he just leave the one spot he thought was not cancer there--and now it has disappeared.

    My best to you all. Hope the insurance thing is working out, too.

    elaine

    Happy and Sad (not cancer related)

    in GENERAL

    Posted

    Peggy.

    I am so happy and so sad, too. I know this is good for Mike, but if one of my kids called now and said they were moving ONE inch farther from me, I would be crazy!

    I raised them to be independent and self sufficient--well, pretty much so, but you know the story, lol. And in the end, the fact that they are living lives without my constant meddling lol, gives me a great deal of comfort.

    I miss them. You will miss Mike, but I know you also are finding some comfort in his spreading of wings.

    love and of course fortitude, my friend

    elaine

    Pls Send Good Luck/ Prayers

    in GENERAL

    Posted

    My husband has a job interview in a city that would put us within 3.5 hours away from BOTH of our children--(who each live in a different city!).

    It would also put us in a city where I KNOW there is decent health care--I grew up there!

    Pls, pls, pls, send as much positive energy our way as you can. We REALLY, REALLY, need it. He goes this Wednesday. Yikes, only two days away!

    The person who is considering hiring him, already knows about my medical history, which relieves me a great deal--If he gets the job, I won't have to worry about him being fired when they find out.

    love and fortitude to you all.

    PS-- At first my husband didn't want to see a lawyer about ADA discrimination--but today he said he would consider it!!!!! I don't know that it would bring us much in the way of money, but the only way to stop such behavior is to bring it into the LIGHT of day!!!!!

    LCSC Has a NEW Sponsor!

    in GENERAL

    Posted

    Just want to say Thank you to JuicePlus for helping to make this site possible--and thanks to whomever was able to link them up with us!

    I am checking out the products now, and hope many of you do.

    elaine

    Celebrating One Year of Gratitude

    in GENERAL

    Posted

    Thank you so much for the inspiring story of your year--that even when the world seems to come crumbling down, there is joy and hopeful recovery!

    On a more selfish point, I want to thank YOU for letting me know that I have been of some assistance to you on your journey! Today I was feeling rather useless --and your words lifted me!

    Congratulations to your daughter for cutting smoking from her daily routine!

    love and fortitude to you all!

    elaine

    Missed Rates of LC on Chest Xray

    in GENERAL

    Posted

    Becky,

    In the cases and studies I am looking at--the missed lesions WERE visible and just not SEEN. I have another two studies and in both of those cases, the miss rate is 50 per cent.

    Since these studies are done with people who eventually are known to have lc, the other 50 per cent of the time, the lesions WERE NOT visible on prior xrays, for whatever reasons.

    Patients who do not have prior chest xrays available for comparison are excluded from the studies.

    By the way, the studies are done blind--those looking at the films in the study are given lots of xrays, some of which have no lesion to have been missed.

    elaine

    Missed Rates of LC on Chest Xray

    in GENERAL

    Posted

    This information really got me to thinking, plus a recent discussion on another thread thaat ended up being somewhat about malpractice.

    If it is acceptable by medical standards for radiologists to miss between 20 and 50 per cent of tumors that ARE visible on the chest xray, how can this be acceptable?

    Can mailpeople put the mail in 50 per cent of the wrong boxes, can structural engineers make half (or any) wrong calculations--without being accountable? Name the profession or job, and ask if being wrong up to 50 per cent of the time would be acceptable...

    Lord knows if a young person put the wrong toppings on half of the hamburgers people ordered, the person wouldn't have the fast food job very long.

    They say medicine is an art--well why do they take all those science classes and so few "art" classes.

    Of all the medical disciplines, radiology seems to be pretty black and white (pun intended). A lesion is there or not there. If it is visible to one person, it IS visible to another.

    No one is asking the radiologist to make a DX based on the xray--just to point out areas of concern.

    People's lives are at stake.

    elaine

    Are these the symptoms?

    in NSCLC GROUP

    Posted

    The seriousness of a cough is not indication of its cause. Many people on this board, myself included had and have only a slight cough.

    There is no way your wife can receive a diagnosis by any of us. As you know, she needs to see a Dr.

    I know only too well the fear, but the fear must be faced in order to rule out the worst or to get treatment, since it is quite possible IF it is cancer it is in an early stage.

    If you can't get her to a Dr., maybe you could have her come here for support. Many, many of us would be happy to offer our hands and hearts to her as she heads to the Dr.'s office and undergoes tests.

    One thing you may want to know is this. My experience has been that Drs. sometimes dilly-dally around and don't order tests initially--offering instead antibiotics etc.... Make sure whatever Dr. she goes to, takes her symptoms seriously and orders at least a chest xray.

    love and fortitude

    elaine

    Cancer Discrimination!

    in GENERAL

    Posted

    Jack

    I caution you to speak with your attorney BEFORE you go to the media. Going to the media can sometimes mess up a potential lawsuit. Sometimes it can help, and IF there is no legal remedy, sometimes the only way to try a case is in the "court of public opinon."

    My best to Cheryl.

    elaine

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