Thursday, April 29, 2010

And then again, maybe not

So the surgery didn't work out quite like I planned.  Actually, it didn't work out at all because the oncology surgeon turned out to be a huge asshole.  When I got the the report from the oncologist and it was totally different from what he told me in the office. The report says that he doesn't think there's any reason to take out my thyroid except to "ease the patient's perception of discomfort, breathing problems, and fear of cancer". It continues to say that he thinks the several suspicious nodules are all benign and he considers my history of thyroid problems to be unlikely because radical changes in thyroid levels simply don't happen. He finished up with "I'm demanding that she consult with an endocrinologist even tho she says she's had issues with them in the past and will only perform the surgery based on the opinion of the endocrinologist. I will be happy to cancel this surgery."

That is SO not what he told us in the office! I have no idea what made him change his mind. Why would he schedule the surgery if he doesn't think that I need it?  And why is he completely overlooking that I have at least 8 nodules that are around 3cm and somewhere around *12* that are under 2cm.  How much room does he think there is in there anyway and why the hell else does he think it's difficult for me to breathe?  I really think that the simple test of "When I look down at my feet I can't breathe anymore" is fairly conclusive.  There is also the fact that there are more nodules than there were 2 years ago and I'm no longer on any medication to control the growth or multiplication of them thanks that that first endo who took me off the tapazole I'd been on for 14 years and started all this.    The oncologist also mentioned that there are SEVERAL nodules with microcalcifications, not just the one nodule that the internist told me about.  There sure weren't any microcalcifications in there two years ago and the development of those alone is scary enough.  

So, WTF?  I threw my hands up in disgust and cancelled the surgery, fired the oncologist and the quack internist, and I'm starting all over.  Again.  I can't even begin to describe how devastating this is to be so close to a resolution only to have it snatched away like that.  I don't often wish bad things on people, but I think that both of those doctors need to spend some time being as sick as I have been and go thru the same bullshit about not getting treatment. 

 I'm not going to dwell on that.  Right now I need to focus on starting all over again and trying to find someone who can help.   This time I'm going to the local university hospital in the hopes that they'll have a more open mind than the oncologist who said "Deborah doesn't fit the template of thyroid issues that I've seen before".    I hate that whole attitude that something can't exist just because it's different from the textbook.   I heard all that song and dance when I started going thru menopause at age 27.  The doctor I was seeing then flat out said I was just too young and put me on Prozac.  That's the same thing the quack internist wanted to do because he doesn't believe I could possibly have any endocrine issues that he hasn't heard of before.  I got news for these doctors, the problem is NOT depression and it's NOT in my head!  My mother had the same bizarre endocrine system I do and so did my grandmother.  We're not normal but it doesn't mean we don't deserve to receive proper medical care.  What I do need is for someone in the medical world to get up off their ass and work at a diagnosis! 

 I'm sorry y'all.  I'm really emotional about all this and for a change I'm sort of losing my cool about it.  I mean, I already had my bag packed for the hospital because I was so thrilled about the chance to get better.  Every time I've thought about that surgeon's letter for the past two weeks I've burst into tears. 

Anyway, I was going to tell you about the University.  There is a qualification process before being accepted by one of the doctors and after a lot of tense waiting I found out this week that I qualify and was accepted.  Yay!  I won't be seeing the head of the department but I don't really care.  I'll see their janitor if he knows how to fix me!  The doctor I'm seeing is a woman and at the risk of sounding sexist, I'm glad about that.  Maybe a woman will have more compassion in addition to being more accepting of the fact that hormones--whether estrogen or thyroid--can be completely unpredictable.   She specializes in the balance of thyroid hormones which gives me hope that she won't just look at a set of numbers and say "well, those are all in normal ranges" and send me away.   Personally I think that the numbers are all a moot point compared to the physical size of the thyroid and nodules and the health complications they cause but we've got to start somewhere.  And maybe she'll be able to see the overall picture and put together the puzzle pieces of all my endocrine problems to find a cause.  And sometimes when I dream, I have a pony.  LOL  But maybe, just maybe, she'll understand what's going on.

I'm hopeful.........ever hopeful.   There's probably going to be another fight later on if surgery is ever confirmed since the insurance company will probably refuse if they got a copy of the oncologist's report.  As much of an asshole as he is, I'm sure he sent them a copy too since he made sure to send a copy to every doctor he knows I see as well as four endos that he thought I might possibly see.   But if the new doctor is good at what she does, she'll have people who can fight the insurance company for me too.  And my pony.

I'm not giving up yet.  I see the new endo on the 4th so keep your fingers crossed for me.  Maybe she'll finally be the one who can help.

I never like to end on a negative note and there's always something positive about miniatures.  This time the positive is that a new mini shop in New York is going to be carrying my work soon.  Yay!  How cool is that!!    No matter what else happens, minis make life good.

1 comment:

  1. This kind of ticked me off "perception of discomfort"...yeah insert my sailor mouth here. I agree, find someone who will actually help. You're not a statistic, you're an individual case and I don't care how many times they've seen X senario before, quite frankly they should know that doesn't mean shit!

    Now on a happier note, I'm very excited to see what you create in 1/2 scale :)