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Hello to all,

I know I have been reclusive and maybe even rude for the past couple months. I just woke up one day realizing how overwhelmed I was with all that has happened to my family and to my LCHelp family.

I lost so many friends here and see so many struggle. I am a person who feels deeply and also feels so powerless to change what is happening. I just became mute, so to speak--for those of you who know me, I know that is hard to believe, lol.

I finally sought professional help because the meds weren't doing the trick. I still feel like I am carrying a heavy load, but I am doing better--some days, anyway.

I updated my profile twice and lost it both times. I couldn't bring myself to rewrite it because it was like reliving it.

Basically my status is that I had a broncoscopy in Feb., and they removed a mucoepidermoid tumor from my right bronchus. There were other suspicious areas which turned out to be squamous dysplasia (unless of couse they were wrong again!.) Due to heavy bleeding they did stop, and the pulmo did admit he didn't get as good a look as he would have liked.

These tumors are often mis Dxed as they did with mine--saying I had a highly agressive adenosquamous tumor. The one I had is "somewhat aggressive" though he "thinks he got it all."

That is the good news. The bad news is that I have went through so much turmoil with bad doctoring again. Really bad. I finally had to go to a new pulmo (my third and the most obnoxious, I must say)

The only thing good about him is that since he didnt have my records, I asked him what he would do if such and such..... and he told me the right answers (IMO) which were totally NOT what the other pulmo was doing.

My main concern is that I still have enlarged lymph nodes which no one has explored. I still have the HPOA; it hasn't let up one bit. So how can I be NED?

The final blow was when I received my pulmo's notes from a recent visit, which said..."Patient refuses to believe that her parathesias (nerve pain etc) are the result of chemo and continues to believe that she is suffering from HPOA."

I have had no chemo, which I have told him at least three times! That was the most glaring of many, many errors in his reports. He says I am on meds he never prescribed, that I have sisters etc etc.

My new PCP is my daughter's age, which is kind of strange. She is ok. But she is on maternity leave until July. Their office is a mess and my records were "lost" for a month--and not until I stood in the reception area saying I would not leave until they were found-- they did find them--filed under KR instead of KA--how hard had they looked before! By this time, however, my PCP had had her baby, a few weeks early, so no one to my knowledge has looked them over.

I had the breast cancer scare last month. Had to go back for tons more views and a ultrasound. And get this!!! The radiologist came out within minutes of my getting dressed to personally give me the results of the new views--a cyst! This was at a scanning center. I am going there in about 10 days for a CT and I wonder if I will have this personal attention for my lungs!! Anyone want to bet?

The ruematologist they sent me to was so uplifting--he told me that "even a few cancer cells in one's body can wreck havoc with it" when I asked why I still had the HPOA. However, when I got his written report it said that my HPOA was probably being caused by my emphysema. How do they get away with this kind of stuff? At least he didn't blame the phantom chemo.

I do have emphysema, but I blow a 91% FEV1 but for some reason my DLCO is only between 33% or 59% of predicted depending on which of the PFTs one wishes to believe. I don't see how two PFTs, done 5 months apart, could be so different.

All the numbers were different, outside the realm of statistical probability, so I have no clue what shape my lungs are in. With the tumor gone I can see why my FEV1 rose from 79% to 91%--but none of the other "improvements" have much logic to them.

I am able to do more; it took me some time to realize that I could, but I can!!!

I am thankful to be alive and able to fight the good fight. I wish I didn't have to "fight" the medical establishment because it is tiring.

My new smart *ss pulmo said, when he realized he was my third pulmo, "Are you expecting me to practice defensive medicine?"

I replied, "If you think it's rough practicing defensive medicine, try practicing defensive


I went on to say that "had he known me BEFORE Jan 04, he would have known that whenever I went to the Dr. I was the one trying to get out of the exam room as quickly as possible--now I feel like I have to post guards at the door so they don't weasel out without addressing MY concerns."

He was expecting to spend 5 minutes with me, and I ended up with about 12--isn't that ridiculous? Having to just about headlock a specialist into 12 minutes???? He basically threw me a script for whatever tests I wanted.

Husband still without work. I went to voc rehab and they are going to try to help me change careers or at least get a job. I want to work. And I need the money and the benefits.

I am off to Vegas for a week. Neice is getting married.

I love you all.

Sorry this was long and boring, but I guess no one HAS to read it.

Also, I lost one of my cats last summer to feline leukemia and now "my boy" has Felline Aids. He is such a fighter and I love him so, so much. (unfortunately, fighting is how he got the disease). The two of us, my Iago and I, have been on so many journeys together. It is sad to see him weaken, but he has kept his spirit.


Here is a link that explains my LC--I don't know if anyone else on the board has this kind or not.

Let me know if you do.

http://www.vh.org/adult/provider/radiol ... rmoid.html

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I have really missed you. Sorry you have had such a rough time of it. Have a good safe trip to Las Vegas. Try to enjoy it as best you can. Don't really understand what is going on with the lung readings. But, praying for you to continue to improve. Take care.

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I am glad to see you back. Of all that you related, I'm really sorry for the wrap-up, about losing your beloved companions. That was how "the Year of Cancer and Loss" ended for me in 2003, I lost my dear dog and we had journeyed far together, "saving" each other as we went.

I wish you the BEST of luck finding a REAL doctor and getting back to work.

Thank you, for taking care of yourself. Wrapping up in a protective cocoon is sometimes what has to be done to keep our sanity.

I've missed your wit and the BSL updates. I truly hope the "NED" is right on because in every tall tale there has to be a glimmer of the truth.

Love to you,


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Oh My! You've been though a lot these last couple of months. Oh MY!!!! I just keep saying Oh My when I read your story. I have never seen anyone have so many horrible doctor's as you have had for over a year now. (are you sure these are real doctor's)? :shock::wink: I can understand why your not to keen on the fact of seeing any new doc's. :?:wink: I sure hope things will start to work in your favor.

Well, I'm glad your up to going to Vegas and up to having a good time. It's pretty hot out in Vegas right now. Stay cool! Have fun!

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Elaine,it is good to hear from you.Sorry for the the loss of your pet,that is always a tough thing to have happen.

Sounds like you are fighting the good fight (I would expect no less from you).I wish you well with finding work and a dr. that is good to you and of some help.

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I'm just glad you're back, E....and hope you'll continue to feel good enough to stay a while. :wink:

It's hard sometimes, being here. I understand that. And on top of that you've had a tad more than your share of docs who should have sought out another profession... :?

Sending all good vibes and thoughts your way for work, and continuing to feel good enough to do it!

You've been missed more than you know...

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Welcome back, Elaine. You've been missed. And what a saga you relate! It really is the luck of the draw, I guess, ending up with a good doctor. We've really been fortunate with our oncologist, but I've heard so many horror stories, most of which pall in comparison to yours.

Enjoy yourself in Vegas -- it's time for some fun in your life.


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Elaine!!! I was so glad to see you are back. You have been through tooo much. You are right, you shouldn't have to fight the medical community AND cancer.

I hope you get the answers you are looking for. We are here for you and you can post your fears and concerns and updates no matter how long they are.

I also lost my beloved dog in December. He was 15 years old and we too had been through so much together. He had cancer. I miss him sooo much, but we have a new puppy (got him in February) and he is such a sweet dog. He brings me smiles and happiness.

Take care Elaine and keep in touch.


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WELL, IT'S ABOUT TIME, STRANGER!! Good to see you back, my friend!

I''m thinking we need to send the chicken cultees out that way to teach some doctors some lessons. I think Fay, Debi & Ry are in charge of chicken-bashing. In this case, they need to be sure they've been trucked through the 110 degree Arizona desert before use. Ewwweeee!

Seriously, I'm sorry to hear you've had such a rough time. I can't even imagine. Somebody above me said it must the "luck of the draw", and I think they're right. You must be so frustrated!

It's very exciting to hear that you're ready to try to re-join the work force. I think it will do you a lot of good just to get back in touch with some people and make some new friends.

Sorry to hear hubby still hasn't found work. How are your children?

Have fun in Vegas and enjoy the wedding!

Love and hugs,


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Wow, Elaine! Good to hear from you!! I have not been posting much myself, as we are going through a tough time down here, but I have been watching for an update from you. I'm sorry that you have been having such a rough time, and that your doctors still suck. But I am really glad that the news wasn't worse, as is always a concern when someone disappears off the board.

I truly hope things settle down quickly for you.

And I am very sorry too, to hear about the loss of your pet. I lost my much loved Golden Retreiver, Oskar, on Boxing Day, and it broke my heart.

Love and fortitude right back at ya!


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Another board I go to has a 2x4 club... We all round up our 2x4s when someone needs a butt-kicking... and then the people who stay behind collect bail-money...

Sounds like a 2x4 club is in order for your Docs!!!

I'm so glad to see you post, and you're remembering my mom in your other post meant so much to be. What a blessing you are!

Will be praying for you as well, Elaine!

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Hi Elaine: I hope you find some docs who are willing to investigate your ideas. I have been lucky in that regard. My oncolgist listens to my ideas and looks into them.

I am sorry to hear about your cats. Feline leukemia is a nasty disease. I hope your tom gets along ok. I have 2 cats, both females. One is an outside cat and the other is an inside and outside cat.

Have a nice time in Las Vegas.

Don M

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I was so glad to see your name beside your post topic. I have missed you and been very worried about you. It sounds like my worries were right. What a ride you have had for the last few months. It isn't fair for you to have so much trouble with your caretakers. Doctors are suppose to be a help to us..not an albatros.

I am also sorry to hear about your cats. I have a little 11 year old dog and a 4 year old cat that I adore. They mean so much to us. Family members.

I will keep you on my prayer list and hope that you and your husband find jobs soon. It will be good for you to get out more and make new friends. I hope we see you more often in the future.


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It is so so so so good to hear from you. I have worried and wondered where you were and how you you were. I so know what you mean about hte pulm doctors. I for the life of me cannot locate one I like for my mom, or should I say one that wants to try and help her. Its frustrating.

I have a questions though what is HPOA and the DLCO percentage?

Please come around and post when you feel up to it, I know I miss ya!~



PS extra prayers for your hubby quickly finding employment, and you too.

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Hi Elaine.

Good to see you post again. Hope that the shrink will shrink whatever it is that needs it.

Listen. I know that you have been through so much and that you are physically isolated from folks who matter to you. Try to stay connected to someone who cares about you, Okay?

So. As far as the bronchus tumor is concerned:

Did the surgeon remove the tumor in its entirety?

What about the areas of dylpasia?

Are they associated with the mucoepidermoid tumor?

How big was it anyway?

And is this an aggressive tumor?

What are the treatment options for you?

Do you have an oncologist working with you?

I know that this has been a rough time for you, Elaine, but take it easy and put your mind in a nice warm bubble bath and give yourself tons of tlc.

Take care.

Cindi o'h

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Writing about our experiences is very much like reliving them. I am sorry you are dealing with people who treat you this way. Fighting the disease is hard enough without having to fight the people who are supposed to be our healers.

I hope you know that on this site many people care for you.

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Hi Elaine,

I don't think I had the pleasure of meeting you. I have been here since Jan.

Welcome back. You certainly have been on the roller coster ride of your life. :shock: Da_n what a bummer. It was one thing after the other. We have to get you straighened out a bit.

You could make a movie titled "Doctors from Hell" or " The attack of the Oncologist Creatures"

starring your former Onocologists and Pulmonary doctors.

I am so blessed to have found wonderful doctors who have taken care of my husband. Bedside manners plus.

Praying that your load is finally being lifted.

Welcome back, let us help you through your delimmas. You certainly have had more than your share.

Also Ellen, I know how hard it is when there is bad news from one or more of our family members here. :( I have felt like you when there seems to be a spurt of bad news. It becomes overwhelming. It seems it all happens at the same time. We help each other to get through those dark days.

Life goes on, and there are many of us who have had negative news that has turned into positive results. For that there is always hope that that dismal light at the end of the tunnel, shines brighter and brighter. That is so uplifting for me!!

Keep posting and be good to yourself. :wink:


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I had the "mucoepiod" thing too. I sent you a PM. I really like to chat with you about what your doctors said.

I haven't been able to find much information about it and I haven't talked with anyone who has been through it.

I'd love to talk...

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Awwww, Elaine. How I've missed your wit and intelligence. I truly understand the difficulty in posting sometimes -- can hardly drag myself upright to the computer, not from being weak or sick, but just not quite knowing how to find the right words.

I wish you all the good things. And more cats in your life. (I had to put one of my older cats down right after I was diagnosed last year -- SO sad.)

Take care of yourself.


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