Updating the Update WITH AN ADDITIONAL UPDATE

[Elaine]

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.

[Ry]

Wow, I feel so much better about skinny butt. Now isn't that something about these mysterious scans you didn't have....

I hope all works out well for your husband and the new job.

Take care and keep updating the updates.

[Elaine]

moved

[cindi o'h]

elaine..

I take offense that you call your doctor "skinny".

Hey! I used to be skinny once...a long time ago....no gutt, no butt

Give her time. She'll catch up with us... ah time has it's sweet revenge.

Seriously, so glad that you have made some type of progress today. Better than I thought possible.

Cindi o'h.

[Frank Lamb]

Elaine,thank you so much for sparing me having to ask you if skinny was a blonde or not.Glad things went better than you expected.

[Addie]

Glad to know that Skinny B sorta redeemed herself, E.

And glad things went in a little better *direction* today, including two blondes finding their way home! (Frank made me say that )

Still keeping a few things crossed that the job sitchy-ashun gets worked out to everyone's satisfaction.

As for drawing blood...for the first time on Monday, they took mine from my finger! One good thing is that the tip of your finger doesn't bruise like the crook of the elbow often does! Just a thought.....unless of course they need vials and vials. Then you kinda need a vein.

Keep us posted on things..alright?

[stand4hope]

Elaine,

Well, at least it sounds like you are making some progress and have somebody listening and scans scheduled. I'm glad to hear that! I'm also glad to hear that skinny butt is DOING something and that you got meds to help you through all this.

I have a skinny ortho doctor (male). I mean he is Barney Fife skinny, minus 20 lbs.

I'm so glad to see this update. Keep in touch!

Love,

Peggy

[Elaine]

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

[luvmydog2]

Thanks for the update Elaine. I like the nick-name you have given her. Don't forget where you are and call her that to her face tho.

[Connie B]

Wow Elaine I don't know! You poor thing! What a mess you have had to endure for sooooo long. How do you keep your sanity? Your a bigger person then I would be. YOU GO GIRL! You have been going through all this sense AUGUST or was it Feb of this year this all started for you RIGHT?? WOW! I think your entitled to cry now and then, and rightfully so. I went through three biopsies before we learned I had LC and it took three months before I found out, I was a basket case! I can't imagine going through what your going through and after all this time, STILL NOT KNOWING what you have. (((((Elaine))))))

I do want to share with you that when I was first dx.d with my mass, (before we knew it was LC) one of the things they thought (strongly thought) it might be was Sarcoidosis. Sorry, don't mean to add more to your pile. It appears to look like LC but it's NOT! You can Google it and find out more info. They also thought it in my case it might even be Lymphoma of some sort. But they said that IF it were Lymphoma or Sarcoidosis, at least those two things are very treatable. I guess I was suppose to find comfort in that at that time, and well..... I have to say I did.

Well, all and all, I am happy for you that your finally getting some answers. I'm sad that you have to go through sooooo much to get them though. This just shouldn't be! It's just not right!

Well Good Luck and Hang in there! Your strength will get you through this.

And we can always HOPE it's NOT CANCER! WOW wouldn't that be music to your ears??? Stay Strong!

[Elaine]

Connie

I have had a PET Scan at Dx, in Feb. The cat showed one mass and three enlarged lymph nodes in the hilar area. Four places in my lung lit up on the PET. The sputum cytologies showed first inconclusive, adenosquamoous and finally adeno.

The bone scan showd uptake in my forearms, shins, pelvis, ankles, and hips and mandible consistent with the HPOA--but the report could not definatively r/o bone mets. The onc did rule out bone mets and said the radiologist had to say he couldnt rule them out to protect hmself.

The liver and spleen were enlarged but no lesions were noted. (This is one of the things Skinny pointed to as perhaps being cosistent with the differentials).

I don't think the DX is as inconlusive as she makes it sound. In August, I was again urged to have a bronch to both get a samlpe and to see what if anything needed to be done about obstruction in a main right bronchus--or extinsic compression of the trachea after my breathing got worse.

In Sept., my husband took two trips, one to Scotland and one to Puerto Rico--after which time I decided to change all my Drs and there you have it.

I researched all night and none of the differentials she suggests seem to acount for all of clinical or radiological findings. Then of course there is the cytologies.....

The link below talks about the things she brought up yesterday. I cant really understand it, but apparently my blood work at DX showed a

monoclonal gammopathy. She is testing again for it, but from what I can gather, this monoclonal gammopathy would not account for the wide varieties of areas that show up on my bone scan. The differentials are ustually more focal in nature.

http://www.questdiagnostics.com/hcp/hcp ... latov.html

It was kind of a nice two hours yesterday....

[SDianneB]

Golly. Wow. I am impressed. Truly.

Elaine, please send some of your wonderful grit & gumption this way, ok? I need to borrow some while going through the maze of opinions and 2nd opinions I'm in right now!

I am in awe and have great respect for what you are doing, and how you are doing it.

Di

[TAnn]

Elaine,

I am glad to hear that your appointment with skinny butt went better than you thought it would. I am also glad that she actually "listened" to your questions and concerns. Maybe she won't be so bad after all and is probably one of those doctors that loves a challenge, which unfortunately it sounds like you are .

Thanks for keeping us posted, and am glad your hubby has the new job. He will grow to like it, or at least tolerate it!

TAnn