Sunday, July 24, 2016

5076 Moving along

Sunday, July 24, 2016

"Writing gives you the illusion of control, and then you realize
it's just an illusion, that people are going to bring their own stuff into it."
-- David Sedaris --


The last three weeks have been very busy.  There was a lot of testing, of course, that kept me moving.  When this all first came up, I started out so very positive, and then things got more and more frustrating, and I got more and more angry.   I believe that one's attitude has a lot to do with medical outcomes, so being put under unnecessary stress made me even angrier, like a snowball effect.  

One thing is my insurance.  They've tried to be very helpful, but ... it turns out nobody much accepts this insurance.  When I called around to schedule the chest xray, for example, I discovered that my local hospital doesn't take my insurance!  Same when I was trying to find a surgeon for a second opinion.  My PCP recommends that as soon as possible, I should dump these guys and go back to just plain Medicare.  Medicare works everywhere.

Another frustration was that no one seems willing to accept that I want both breasts removed, and I DO NOT want reconstruction!  I get looks of disbelief, like an incredulous "You know that means you'll be just flat?"  Uh, yeah.  That's what I want.  The surgeon said she would not do a mastectomy, just a lumpectomy, and her reason was that because I have a long history as a smoker, there's an increased chance that "the flap" would not have enough blood supply, and the flap skin would die, so she doesn't want to make a flap.

Well, I did the research.  First off, the incidence of flap necrosis is in fact doubled for smokers, but as is often the case, a very small incidence doubled is STILL a very small incidence! People tend to forget that.  Secondly, the research indicates that the difficulty with the flap occurs ONLY when the skin is draped over a filler/mold/expander used when reconstruction is planned, because the flap is thin injured skin draped over non-living non-organic material, so the skin must be able to support itself throughout healing.  If you are not planning reconstruction, the skin is laid nice and flat over living tissue, into which it happily grows and shares blood with.  None of the research indicates a common flap problem when no reconstruction is planned.  But, this is the reason she gives for insisting on lumpectomy.

Why do they refuse to believe I want NO RECONSTRUCTION!  Are my breasts so magnificent they can't imagine my ditching them?

(You know, I'm almost believing that, because almost everyone was amenable to complete removal until they saw them in all their glory.  Then suddenly they were against anything more than lumpectomy.)

So, I had the lumpectomy last Wednesday, July 20.  Daughter took me in early morning (arrived at 7:40).  Things did not happen quickly after that.  There was a lot of waiting, with, of course, no food or water since midnight.  I finally got into the OR at 2 pm-ish.  That was kind of funny.  They had taken my glasses, so I couldn't see anything, but there were 10 or 12 people in the OR, mostly women, and it sounded like a party going on.   They have tumor conferences on Thursday, the interesting case of the week, and it turned that the prior Thursday was me.  Every doctor and technician I had seen since then knew all about me.  It felt weird.

We finally got out of there around 5 pm, I think.

I'm all bandaged and taped up, and probably swollen, so I have no idea what it looks like.  The right one is definitely smaller now than the healthy left, but not by as much as I had hoped.  Imagine a volcano shape.  Now blow off the top of the volcano, leaving the base intact.  That's what I seem to have.

They gave me a prescription for Percocet, which I haven't filled.  They chewed up my upper lip and the right side of my jaw inside, so I briefly needed pain killers for that.  But not for the breast.  No pain whatsoever from the breast or from the two lymph nodes removed high on the side of the breast.  Nothing but itching.

The surgery was Wednesday.  Wednesday evening blood showed in the gauze through the transparent bandages.  Thursday morning the red was replaced by pale yellow.  By Thursday evening there was nothing there.  The gauze actually looks almost clean, which is weird.  Thursday morning the itching started.  That's supposed to be good.  There's some slight tenderness off to the side, pretty much where the lump was.  And that's it.

The lump and lymph nodes went off to the lab.  I'll find out what the lab says when I see the surgeon in a few days.  According to my research, something like 30% of lumpectomies show "dirty" edges, and you need a second surgery to get to clean edges.  That's a part they never tell you.  I told her if she was going to insist on lumpectomy, she should "go deep, go wide, take a lot more than you think you need, I don't want to see dirty edges, and remember cosmetic result is not a consideration", so we'll see.  I will be absolutely pissed if we have to go back in there.  Um, considering I wanted a mastectomy.  Once and done.

Also in a few days I'll find out what kind of follow-on treatment I need.


KJL said...

This is frustrating - you should have been able to have mastectomy or mastectomies if you wanted since reconstruction was not a consideration for you. Glad to hear you're recovering well - itching is healing :-). More frustration waiting for the path report but there's a lot of testing they should do and that takes time. You have to heal before anything else, if needed, can occur so this delay will not set you back any in the process.

rockygrace said...

I'm glad you're doing well!

the queen said...

They are pledged to do no harm and are penalized for unnecessary surgeries and afraid of lawsuits. Three reasons to not do it count more than your desire to have them do it. I'm on your side, but I see why they would hesitate.