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My Angel


Elaine

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All your prayers and good wishes have brought an angel to me. An angel with a stethascope around her neck! A Dr. who we all expect to see and often don't. She IS the right one for me. Now I have to find a way to pack her up and take her with me when I move. Already I miss her. That is how much I like her.

I am guessing I am carrying a ton of weight on my shoulders, and after my 90 minutes with her, I surely have shed several hundred pounds.

Thank you all. I do believe the energy and love from this board was with me when I chose a name, just a name is all I had to go on.

elaine

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I'm so glad you finally found a good fit, Elaine! Don't start worrying just yet about your move, though....as maybe this doc will have an equally great colleague to refer you to......huh?

I'm just grateful that for now....and the coming weeks...you've got an onc you can talk to and trust and feel good about. It's about bloomin' time....eh?

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Addie,

I trust her to point me to Drs who are good. She, being a human, unlike someone else I know, knows who is not only good, but GOOD, as in good with people.

She called an onc right then and there. He and she want me to have a bronchospy before I see him. I have resisted having one since day one, but when she told me I had to do it, and the way she said it, I would do anything, even do my best to be awake through it, if it comes to that.

Together we picked a pulmonologist and it might be after the new year, but she assured me based on my CT that it should be ok to wait. I felt calmer just being in her presence.

I guess having been told 10 months ago that I only had 6-9 months, makes me a little nervous, lol.

They need to REALLY see what is going on and get a good hunk of it, cause all I had were sputum cytologies and each said a diferent thing. The CT doesn't really show the mass to the extent needed, so......it's hard telling what's going on there. We just know it is still confined to the bronchus. There is some lymph node involvement, but this report said two and previous reports said four, so who knows. PET Scan at DX showed three. They aren't growing much either. I have a small area of collapsed lung distal to the bronchus. It is NOT a mass to the best of anyone's ability to say.

I only wish I knew if my brain and spine/bones were "clean." And I am still a lot angry that I don't know that yet.

I also have some pretty hefty emphysema in upper lobes. This report calls it "moderately severe" while 10 months ago it was deemed mild to moderate....????? I need a pulmonologist, that's for sure.

This is probably more info than anyone needs or wants to know, so sorry.

She says it's all puzzling to be sure and thought that if I weren't freaked out about it, I wouldn't be normal. Whereas, Skinny thought I was whacko for being freaked out. Worse, what Skinny deemed being whacko is wanting to know information and pushing to get her to move! That's the main difference. One has empathy and the other does not.

elaine

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This is probably more info than anyone needs or wants to know, so sorry.

She says it's all puzzling to be sure and thought that if I weren't freaked out about it, I wouldn't be normal.

No, no.....this isn't TMI...you AND the rest of us (on your behalf) are finally getting to where the info is sufficient.....don't you think? (Or almost sufficient...because like you, I'd be wondering about the bones and brain too!!)

As you said...this one is human....empathetic. She will steer you in the right direction and I think you need to ask her too, about an MRI and bone scan.

It sounds good to me that things appear to be relatively stable...aside perhaps from the SOB. Mild to moderate as opposed to moderately severe probably depends on who's looking at it. The first chest CT I had done to dx my cancer...the radiologist referred to the lymphedema as "mild to moderate". With a later CT it was called "moderately extensive". When I asked the rad. onc what he thought, he said I had "significantly less than" he normally sees with small cell limited!! See what I mean...they all have a different way to term the same thing, it seems.

All that matters is the end results...eh? I feel you're now in good hands...AND you have someone who will listen...who seems to understand how it is to be on YOUR side of this doctor/patient equation.

This is a very good....if sadly belated...."start". I look forward to hearing how things go from here...and hope you start getting some answers...and some GOOD answers at that! Hang in there, E. You know we're with you....

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Hi Elaine

I am so glad to read this post!!

A kind, compassionate and empathetic doctor is the least that you deserve - I'm just sorry you had to wait so long for one to turn up!!

I hope you get all the tests you need, and the results are what we are all hoping for you to hear!

Love

Karen

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Elaine,

I've been reading your story and I can't tell you how happy I am for you. You sound so relieved to have someone that you can trust. Being able to place yourself in to hands you trust is so important. Try to stay calm and take it one day at a time. Hopefully, now you will get answers and a game plan. God Bless you Elaine.

sue

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Elaine,

I am so happy Santa saw fit to give you your Christmas gift early! It is SO good to hear you finally found a human doctor! Glad to hear you starting on the "Getting Somewhere" trail! Hope the questions are answered, and in a far more positive manner than you ever dreamed possible!

Take care,

Becky

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The fact that you are all so happy for me, makes me even happier! We went out tonight and had $30.00 steaks! I kept thinking that was a whole lot of Ativan we were eating, lol. But once the steaks arrived, I did enjoy my meal!

The reason we probably have to wait until Jan 1 for tests etc is because my new Doctor is not officially my new Dr., so she cant really order me tests (unbelievable bueracracy, I know!) And she can't really call Skinny up and tell Skinny what to do. But I am going to keep working on making her my official Dr. as soon as I can since I am one step away from calling the newspaper. (But like some small towns, and this really is a small town kind of place even though it's the biggest in the state) the press may be reluctant to write about two main employers and two hefty advertisers.

However, she's lining up the appointments now and she will flash out referrals later!

Since I spent two hours this AM before a 10 am appointment wrestling with the clinic administrators, who had promised me yesterday that they would "fix" things so I didn't have to pay today, and of course I ended up having to pay (thank God it was worth it and more!), I didn't have the stomach to come home and badger them.. Why ruin a good day!

I have PFTs tomorrow that Skinny had ordered way back when, so Angel Doc convinced me to have them done and insist the reports be sent to her, so I don't have to ever talk to SKinny again, we can only hope. I don't know if that can be done or not but I can pick them up I guess and take them to her like I did everything else today.

Anyway, I would like the PET and Bone and brain scans I was "promised in Oct. Sheesh. On the other hand, I want Christmas too.

elaine

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I have PFTs tomorrow that Skinny had ordered way back when, so Angel Doc convinced me to have them done and insist the reports be sent to her, so I don't have to ever talk to SKinny again, we can only hope. I don't know if that can be done or not but I can pick them up I guess and take them to her like I did everything else today.

You're starting to figure you way thru the system, aren't you? :wink: YES......pick up a copy of those reports and hand carry them to Angel Doc!!! Don't rely on the system to follow thru. You do it for yourself!

E....yesterday, I got up and walked out of the GYN/ONC's office I'd been sent to for a consult. My PCP and GYN want that ovarian cyst found at dx to come out...so both ovaries are on the block and a GYN/ONC has to be on standby "in case" of a malignancy (which nobody thinks this is!)

The gyn/onc's exam room was cramped and the window sill was filthy. There was no place to even hang my clothes, so my jacket was on top of my purse on the floor and my slacks and underwear had to be folded and placed on the drainboard next to the sink! :shock:

I was upset because I had NOT anticipated the need for a physical exam at this consult. I mean, hell...this guy will ONLY be on standby during surgery IF the lesion on my ovary is malignant....he's NOT doing the surgery otherwise. So why the need for yet ANOTHER physical exam when the cyst is TOO SMALL to be felt (2 X 3 cm) AND there are four ultrasounds and at least two CT scans to show it? :?

The nurse said surely I understood that the good doctor "didn't want to just take another doctor's word" for what was going on with me!! Huh? Why the hell not? I mean am I there on a lark? Are we all just making this cyst UP in order to get our jollies yanking the chain of a GYN/ONC? Did my GYN not send over a file, those ultrasounds, maybe even the CT scan reports?

They let me sit yesterday, in this cramped, not very clean exam room, upset, blood pressure thru the roof, half naked.....for over 15 minutes after the nurse AND doctor both knew I was upset and fighting back tears.

That 15 minutes was my limit. I got up and walked out....called my GYN and PCP later and said that if they cannot figure out a way to get these ovaries out of me WITHOUT the need for yet another new doctor doing an invasive exam......well, then....I'd be keeping my ovaries for a while!

My point, E., is that sometimes enough really is enough! I'm generally very easy going. I trust my docs and go along with what they advise. But once in a while someone pushes me beyond reasonable endurance and I fight back!

After all I've been through over the last 7 months...my limit now is that NOT ONE MORE DOCTOR is going to do a physical exam on me because "this is how he always does it"!! This is MY body and I've had enough. Everyone in the Western Hemisphere knows, by now, where that cyst is....how big it is....that it's not done ANYTHING since May of this year (not really gotten bigger OR smaller) and my GYN has never been able to feel it so I don't expect the GYN/ONC would have either....and the REAL bottom line is......WHY DOES HE HAVE TO FEEL IT IF IT'S ONLY GONNA COME OUT ANYWAY?????

See my point? :wink: I've had enough. I'm calling the shots now on just WHO - if anyone - gets any more chances at feeling that little cyst. And right now, I'm leaning towards....WHEN HELL FREEZES OVER!! 8)

We are captains of our own ships, Elaine. Some days.....we just have to take the helm and prove it!

Go get a copy of the PFT report and hand deliver it to Angel Doc! Take the helm, E.....you're in charge! 8)

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Elaine, I've been off the boards for a couple of days, and was so glad to see this! A human doctor, at last -- I'm celebrating with you! I hope all works out so that you never have to deal with people who don't care about you again. So glad your Angel doctor finally showed up!

BeckyCW

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