Friday, July 01, 2016

5075 Surgery tentatively scheduled.

Friday, July 1, 2016

Short story - She lies. He lies. They lay.


I spend a good portion of yesterday and today on the phone.  Dr. Kohli, the surgeon, wants a nephrologist (kidney) consultation as part of the presurgical testing.  She wants to ensure that they don't kill my kidneys with whatever else they have to give me. 

We're having trouble finding one known to her and my PCP who will also take my insurance, and is fairly close to Monmouth Medical Center (where the Breast Center is).  Found one today, have an appointment with her July 14.  The surgery is scheduled for July 21.  Three weeks out.  I wish it were sooner.

I have to get a referral to the nephrologist from my PCP, so I called him today to ask for that.  The poor guy.  He's been getting scan and lab reports, but still feels out of the loop and isn't sure why we need the nephrology consult, so I have an appointment with him on Tuesday to fill him in on what's been going on.

I'm feeling a bit frustrated.  I don't like delays.  This thing is fairly small, in a good location, and so far the lymph nodes "look good".  But it's growing fast.  It's aggressive.  I don't want it to suddenly decide to become an empire, with colonies elsewhere.

As far as the kidney is concerned, it's only the left that we have to worry about (I guess).  I can live with one kidney, and even if the worst happens, there's dialysis, whatever.  I'd really rather take care of the thing that we KNOW will kill me and not delay working on that because of  worry about the possibility of something that might kill me.

But, I seem to be the only person worried about delay, so, maybe I should relax.

Wednesday, June 29, 2016

5074 Changing plans

Wednesday, June 29, 2016

"It is dangerous to be right when the government is wrong."
-- Voltaire --


Well, I said I would be willing to change plans after taking into consideration what the surgeon had to say.  And yeah, plans have changed.

I spent about an hour and a half with her.  She was open to double mastectomy ... um... but not right now.

It's a little complicated.  I'll explain.  And this explains why she cancelled today's surgery (or handed it off, I don't know) and moved my appointment from Friday to today.

I smoke.  Not a lot, but enough.  Where this causes a problem is in the blood supply to the skin that will cover the area.  I've got one count against me because of the size, a second count because of my age, and the third is the smoking, which constricts blood vessels, so there's a danger of the skin actually dying, and then we're talking necrosis and grafts and a royal mess.  

If I quit smoking right now, after about (I forget how many) weeks, (in a minute you'll understand why the time span doesn't matter anyway) my odds of no problems after the mastectomy go way up.  So, ok.  Cold turkey tonight.

The problem is that I don't have that much time.  We have to move on this fast.

I had noticed that every time someone scanned or prodded this thing, the size estimate went up.  I kinda figured that was because everyone was looking at or estimating something different.  Well, no.  It IS getting bigger.  Fast.

It's now at 2.1 cm by 2.2 cm by 2.2 cm.  On the 16th it was 1.5 ish.

I saw the lab results from the biopsy today.  Most stuff looks pretty good, but there's one bad number, and that makes all the difference.   Not in prognosis - that still seems pretty good - but it means we don't have time to waste.

Biopsy lab results: 
Grade 2 (of 0 to 4), in the absence of a lymph node biopsy, but the nodes "look good".
It is estrogen sensitive, 60%.  That's good for treatment effectiveness.
Slight progesterone , at 1%.
Her2/neu is negative, which is very good news.
Ki-67 is 40%, which is very bad.

Ki-67 is an indicator as to the aggressiveness, rate of growth.
Under 10% is almost like the tumor is resting.
10-20% is borderline.
Over 20% is high, fast and aggressive.
I'm at 40%.
That means that 40% of the cells are currently in the process of dividing.
Do you know what exponential growth is?

So, there's no time to wait for anything other than pre-surgical testing. 
She wants to do a lumpectomy and sentinel node biopsy ASAP.
I had told her about my negative feels about lumpectomies, so I asked her to "go wide and deep, way beyond what looks like the margins, as much as you can take without creating secondary problems.  Remember, appearance is not a consideration."  She laughed, and agreed.  Go wide and deep.

And then, after we have the malignancy in control (after radiation and chemo, and how much of what kinds depends on what they find), after I've healed from all that, THEN we can do the double mastectomy if I still want it. (And I'm pretty sure I will.)

I swear I heard her say the lumpectomy will not require a hospital stay.  In and out in one day.  Interesting.

Now I quit smoking, and wait for calls scheduling all the pre-surgical testing.

Garbage collection is tomorrow, luckily, so I can clear out all the ashtrays and whatever tonight.  (One ashtray on the front porch, one on the back patio, one in the van.  I don't smoke in the house.)  That's a quick cut.  And I have all the milk, eggs, and bread I'll need for a long while, so I won't have to go to the deli and be tempted.

You know, I'm still not worried about the tumor.  The quitting smoking, yes, but not the tumor.  I'm surprisingly relaxed.  Or at least I am now.  I might not be so relaxed after four days cold turkey.


Rocky, any hints to make it easier?

Tuesday, June 28, 2016

5073 Costs of medical care

Tuesday, June 28, 2016

"Love is an irresistible desire to be irresistibly desired."
-- Robert Frost --


I read a NY Times article this morning about the high cost of maternity care and delivery in the US.  When Daughter was born 41 years ago, the bill wasn't so terribly high, but I do remember that when I requested an itemized bill, the hospital objected at first, then finally gave in, and I was shocked to find that we were charged for things that we never got.  I'd had no medication whatsoever, not even aspirin, and yet we (well, the insurance co.) were billed for all kinds of stuff.  I noticed, for example, that we were billed some ridiculous amount for Daughter's blood typing, so I called the hospital and asked what her blood type was.  They hemmed and hawed, and finally admitted it had never been done.  Buncha stuff like that.

I informed the insurance company of all the bogus charges.  I don't know what happened after that.  It was like they had a standard list of usual procedures, and just charged for all of it, whether we got it or not.  

So, I wondered what the breast business might end up costing.  My insurance dealy has me pay 20% for just about everything up to a certain out-of-pocket limit, so I figured out what this has likely cost so far - just through the diagnostic part.
So far, I've had
- a diagnostic mammogram (how is that different from the standard mammo, BTW?)
- ultrasound
- ultrasound-guided core needle biopsy
- fine needle aspiration of a cyst
- MRI of breasts
- associated lab work and technical stuff for the above.

So far, I've paid a bit over $500 to the breast center.  If that's 20%, then so far it has cost over $2,500, and we haven't even got to the fancy parts yet.  I don't know if I should expect a separate bill from radiologists, but according to everyone I've spoken to so far, no, they are employees of the center, so do not bill separately.  The only ones who bill separately are apparently the anesthesiologists. (Incidentally, I did the math wrong first time through, and came up with $10,000 instead of $2,500.  Oops.  Not so terrible after all....)

Jay's brain cancer was intense, a lot of stuff done, many MRIs, three craniotomies, five different chemotherapies, immune system therapy, several weeks of daily radiation, steriotactic radiosurgery, many stays in hospitals and specialized care centers, many specialists, many expensive maintenance drugs, and yet between late 1998 and the end of 2001 the grand total was less than $300,000.

Wow.  I think costs have increased a bit ....  especially distressing given that insurance now covers a lot less of the total.

Monday, June 27, 2016

5072 Some exciting news

Monday, June 27, 2016

I am fully aware of all the things I don't know,
and those things seem more important than the things I do know.
-- Silk --


I had an MRI of the breasts today.  They were able to use my hand to infuse the contrast, so that was no problem at all.  The setup was kind of funny - I lay face-down on the table, with my breasts hanging through two holes in the surface.  I was quite comfortable.  I am seldom able to lie on my stomach, and I liked it.

Before we got started, I told the technician about my wonky left kidney, so we have to be cognizant that anything that goes into the lower chamber (my left kidney has two unconnected chambers and two ureters, and the lower one is blocked by a stone) may not be flushed out for a long time, so I would prefer not to use anything that might damage a kidney.  So he went off and talked to some doctor, and came back and did two things.

1.) They switched to another contrast that is gentle on kidneys, "It's the one we use for people with renal failure".  He told me the name, but of course I've forgotten it.  I asked him if it was as effective, does it give the same results, and he said yes, that the scans are exactly the same.  So I blinked twice, and asked "Then why don't you use that one all the time for everyone?"  He looked like I'd just voted for his favorite candidate, and said "Yeah.  That would make sense.  [shrug]  I don't know."

2.)  They took some blood, and ran it straight to the lab for renal function testing, and came back in minutes with the news that TA RAH my kidneys are not just working fine, they're working exceedingly well!  He told me what they tested for, what the ranges were, and what my numbers were, and of course I've forgotten (I didn't have a pen or paper in there to write anything down), but translating to a scale of 1 to 10 where 1 is a healthy teenager and 10 is you'll be dead next week, I came in like 1.2.    What the...?!?!?!

Remember that kidney doctor who tortured me through 2011 and 2012?  The one who, when I asked why we were doing the same (often painful) tests over and over when the results were always the same, answered "Because it's progressing" and wouldn't say anything more?  Who scared me to death because kidney failure is relentlessly progressive, kidneys once damaged never heal but turn into a chain of dominoes?  Yeah, him?  Before I just didn't like him.  Now I'm furious with him.

I fired him because I had no trust or faith in him, and I figured if I was headed for dialysis anyway, I'd rather skip all this useless testing between now and then, since nothing was going to stop or slow it, so I may as well sit back comfortably in the meantime. 

Apparently it's not progressing.  And I guess all the things I've been doing to protect my kidneys, like restricting foods and supplements high in minerals and salts and drinking lots of water throughout the day, have been working. 

Maybe now I can even have a banana occasionally.  I miss bananas. 

5071 Losing it

Monday, June 27, 2016

"God created Man in his own image and Man, being a generous sort, returned the favor."
-- Mark Twain --


In a comment on an earlier post, I wrote, in regard to mastectomy: "Daughter told me that losing them entirely will break my grandbaby's heart. "Huh?" Daughter doesn't even fill an A cup, and Nugget (5 years old) finds snuggling into Gramma's soft chest pillows very comforting."

That brought an old memory vividly to mind.

My grandmother was, no other way to say it, fat.  She was almost perfectly round from her shoulders to her knees, with big doughy arms.  She was no more than 4' 7" tall.

I forget how old I was at the time, still a child, anyway (but maybe into middle school?) when we went to visit her again.  We'd been living pretty far from Scranton and I hadn't seen her since the previous summer. 

She was skinny!  She was all flat all over!  There was nothing left of her! 

Mom said Gramma had been diagnosed with diabetes, so she had to lose weight, but that didn't mean anything to me.

I completely freaked.  It took me a very long time to come to terms with that.  I kept wailing, "Grammas are SUPPOSED to be fat!"

See, the way I saw it then, other fat people might take more than their share, but when a Gramma was fat, that meant she had more to give.  I was afraid Gramma couldn't love me so much anymore.

You know, I wonder if that has anything to do with the fact that I've gained a good 30 pounds since Nugget was born, and it hasn't bothered me at all?  Now I'm a Gramma.  Grammas are SUPPOSED to be fat!