Tuesday, October 25, 2016

5090 Chemo Rounds 1 and 2

Tuesday, October 25, 2016

"Skill without imagination is craftsmanship and gives us many useful objects
such as wickerwork picnic baskets. Imagination without skill gives us modern art."
-- Tom Stoppard --


So, here's how it goes.  I arrive on a Tuesday and go upstairs, where I sit in a recliner that's much too big for me, so I can't recline it.  They take blood through the PICC or port, and start an IV with saline and Zofran (for nausea).  We wait for the blood counts to come back.  If they're good, we do the infusions.

I'm getting CMF (cyclophosphamide 1,000 mg, methotrexate 67 mg, and 5-fluorouracil 1,000 mg) on day one of each cycle, or "round".  The M and F are what they call a "push" - it's like a slow injection into the IV.  The C is a drip, takes about 30 minutes or so.  On day 2, I get a shot of  Neulasta to encourage the marrow to make white blood cells.

Then nothing for two more Tuesdays.  That's one round.  Three weeks.

I started Round 1 on September 20.  I had a prescription for Zofran pills, every six hours for two days for nausea, and as needed thereafter.  The doctor had also given me a prescription for Olanzapine (Zyprexa) 10 mg, one a day for four days.   On label it's an anti-psychotic.  Off label it has been shown to help with chemo nausea.  He warned me that it might have mental effects.

The Olanzapine prescription was difficult to fill, required calls back and forth between the onco-nurse and the pharmacist.  I don't think they wanted to fill it.  Given what happened next, I suspect the dosage was too high, and the pharmacist was uncomfortable with the high dosage, once a day, for four days.  This is one of those things you're supposed to ramp up, and ramp down.  No ramping here.

So, I dutifully took the Zofran as prescribed on Wednesday and Thursday.  I took the first Olanzapine on Wednesday late afternoon, and it was ok.  I took the second Thursday late afternoon, and everything was fine until I went to bed about 9:30 pm (I like to read before falling asleep).  

Now, me and drugs - I almost never even bother to fill prescriptions for pain meds.  I don't want to take hard-core prescription opiates if I don't really need it.  Recreationally, in my whole life I tried marijuana exactly once, in maybe 1979, and it made me so sick I can't even be in the same house with it now.  There's never been anything else, never tried anything else.  So it's difficult for me to describe what that night was like, having nothing to compare it to.  

The minute I went horizontal, things got really weird.  Maybe like a bad LSD trip?  One part of my mind was seeing things that weren't there, things were happening that weren't happening, movement, whirling, colors, scenes played out from things I recently read, many of them, and it wasn't like serially - it was all at once, everything overlapping, and all on a roller coaster.  There was pandemonium going on in there. The other (smaller) part of my mind was still rational and watching this happening and trying to wrest control back.  That went on until about 5 am, when I finally fell asleep.  The next day I was exhausted.

Other than that, Round 1 was pretty much a breeze.  No nausea, no fatigue.  

One thing I noticed was that suddenly I smelled everything very strongly, even with a headcold, even things that weren't there.  That wasn't a real problem until I went to the grocery store.  Man, ever notice how many things there are to smell in a grocery store?  That was my closest brush with nausea.  I had to rush around, grab my stuff, and get out quickly.

Constipation was expected, but two days of prune juice (which I actually like) fixed that quickly and easily.

The doctor had said that this cocktail might thin my hair a little, but I wouldn't lose it.  Well, it quickly started falling out by the handful.  By the second week, the "rope" that should have been 1.5 inches in diameter was less than an inch thick.  I gave up and cut the hair that had been touching my tailbone to mid-neck.  By then the tail was too thin to even consider donating it.  If I had known that was going to happen, I'd have donated it before starting chemo.  It was in perfect condition.  Not a single split end or shaft break in any of it.  No coloring, no heat, no chemicals, no crimping barrettes, no rubber bands had ever been allowed to touch it.  Sigh.  No big deal.  Actually, I kind of like it this swinging length.

I'd also been told that the Neulasta would likely cause bone pain, sometimes severe.  I had one bout of excruciating pain in my lower back, but one Motrin banished that in minutes, never to return. 

And that was Round 1.  Not bad.  Now we get to the second place I may have been misled.  The doctor and the nurses told me that the first round would be the most difficult and subsequent rounds would be easier, except that the fatigue would likely increase.  So you can imagine how pleased I was that it went so well.

Round 2 started Tuesday, October 11.  The first thing I did was give the bottle of Olanzapine to the doctor and tell him that I didn't care what he did with it, but I never wanted to see that stuff again.  Days 1 and 2 went just like before, except this time I was allowed to be in the big room with all the well-behaved people.  The rest of the week didn't go so well.  Wednesday and Thursday I ate next to nothing.  I'd try to fix food, but then couldn't face it.  There wasn't any nausea, but I felt like if I ate that crap, there would be.  Wednesday through Sunday I kept falling asleep on my feet.  I was miserable.  It wasn't until the middle of the second week (last week) that I felt alive again.

What I learned is that about the only food I could face the first week was "white" food.  Plain yogurt.  Plain ice cream.  Vanilla and rice pudding.  White cheeses.  Mashed banana.  Chocolate milk.  Boiled eggs. Mild crackers with brie.  (Somehow, brie was ok, but Philadelphia cream cheese was not.)

Round 3 (of 6) starts next week, Tuesday, November 1.  I plan to lay in a good supply of the above white stuff ahead of time so I don't have to send Daughter on foraging trips again.  


I'm starting to worry a little bit about the care I'm getting.  (Starting?!)

I got the PICC in my left arm just before Round 1.  The only thing I was told about the care of it was that I shouldn't get it wet.  If taking a shower, wrap with Saran (I tried, it didn't hold at all), if bath, hang that arm over the side of the tub.  I had to add a little tape to keep the IV hookup doohickies (lumens) from flopping around, and I loosely wrapped it with a kind of wide athletic wrap so it wouldn't get caught on my clothing or scrape my breast.  

[Pictures and descriptions of PICCs and Ports here:  https://infuserveamerica.com/iv-line-access/]

So when I went in for Round 2, the nurse was shocked to see the same doohickies as had been installed three weeks before.  The PICC was supposed to be flushed and the doohickies replaced at an absolute minimum of every 7 days, preferably every day.  So she was freaked that they hadn't been touched in three weeks.  She seemed surprised that the line was open, not clotted, and it worked fine.  After the infusion, the exterior parts were replaced, and I was scheduled to get the port WITHIN A WEEK!!!

How come nobody ever mentioned daily flushing to me?   Seems like that should have been important info.

So I got the port last Tuesday, October 18.  

It was placed on the left instead of the usual right because the tumor was on the right.  The catheter goes up from the port (which is implanted under the skin), under the collar bone, into a vein near the side of my neck, and down to the heart.  I was sedated, so Daughter accompanied me for the day.  I was very happy that they were able to use the PICC for the sedation instead of an IV in my hand (pain!).  It was mild sedation because I was awake the whole time, but couldn't see anything because they had a kind of tent over my head.  The only pain was the numbing shots.  They pulled the PICC when they were finished and I was happy to see it go.

My left chest is a mess.  There's a glued incision above the collar bone, and another where they put the port in, and they look terrible because under the glue it's all bloody.  From the port on down my breast for about six inches there's heavy bruising, probably from subcutaneous bleeding.  Otherwise it seems to be doing just fine.  Couldn't get it wet for four days, can't wear a bra for a week (because the strap would come too close).  So today is my first bra day.   I've been driving with the seat belt under my arm, because over the shoulder it goes directly over the port.  I'll have to figure out something better and more permanent for that.  Maybe just padding.

The chemo nurse said they would remove the port when chemo is finished.  I said "Uh-uh, no way, I'm keeping this!"  They're good for up to two years if they are flushed once a month, and I suspect that there will be many blood draws and with my diagnosis (triple negative) with a high chance of recurrence there will be all kinds of scans with contrast, and a port will come in handy (I got a power port, supposedly, so it can handle denser contrast fluids).  No more blown veins, no more monster bruises, no more branding irons on my hands and arms.  No more flinching and crying.  The nurse laughed, and said "It's yours, and you have to sign permission to have it removed, so yeah.  Just don't sign."

Over and out.

Monday, October 24, 2016

5089 Medical progress, start chemo

Monday, October 27, 2016

Rita Rudner: "Men don't live like humans. They live like bears with furniture"


Over the past few decades, breast cancer survival rates have been improving due to earlier detection (better mammogram technology) and targeted therapies.   When my core biopsy was examined by the lab, they said the cells showed 60% estrogen receptors (and 0% progesterone and HER2).  Everyone who saw that said, "Oh, that;s very good!", because that meant that that targeting the estrogen receptors would work.  That's targeted therapy.

When you last heard from me  on this topic, we were anxiously awaiting the Oncotype DX results.  The medical oncologist had said that we would definitely be doing the estrogen receptor blocking, and would likely do radiation, but whether I needed chemotherapy or not would depend on my Oncotype score.  If it was low, no chemo.  High, definite chemo.  In the middle, "We'll talk."

So, we got the report.

The scores on the chart went from  0 to 50.

I scored 57.  Off the chart.


While we were talking and he was making chemo noises, I happened to notice something odd on the report.  In the fine print it said that "this sample" had 0% estrogen receptors.  I pointed it out to him, and he made some noises about how "their lab isn't certified" or some other term that seemed to imply that I should ignore what it said.  It was more than obvious that he'd have preferred I hadn't noticed that.

I wouldn't let go, especially given that the report was ABOUT the effectiveness of estrogen receptor targeting, and I asked how believable ANY lab report was, and finally he admitted that after he saw that, he'd had the hospital lab run tests on my post-surgery tumor, and their results were also 0% estrogen receptors.  Note that the core biopsy, one month before surgery, showed 60% estrogen.  That's a big difference.

It appears that I now have what is called "triple negative" breast cancer (TNBC), which means there is no targeted therapy for it.

I am incredibly angry.  If the initial core biopsy had shown TNBC, then I would have had chemo before surgery, which studies have shown that to vastly improve the prognosis.  Too late now.  The prognosis for TNBC is miserable.  Don't bother looking it up.

So, did someone screw up?  Was it a mixed tumor and different slices showed different characteristics?  Did they mix up my results with someone elses?  (Shades of 2012 when a hospital mixed my records up with a heart patient, and I was being treated for conditions I didn't have.  Now I was not treated for a condition I do have!)  Did the tumor really change so drastically in one month, while having shown no growth during that period? 

So, I have an extremely aggressive tumor (scoring 8/8).  Targeted therapy seems a vague hope.  The only good news is that it was found at an early stage (T2a)  and there was no node involvement (assuming I can believe the lab).

Immediately after that meeting with the oncologist, I was scheduled for a chest port, but I had a head cold and so much post-nasal congestion I couldn't control the coughing, so there was a last-minute decision to install a PICC instead.  That's an IV hookup that enters a vein in the inside of my upper arm and travels to just before the heart.  Not pretty.  Can't get the dangly parts wet, so rather interesting to bathe.

The next day we started chemo.

Now, I had been told I had a very treatable cancer.  Then I find out that's not true.  
I had been told I wouldn't need an IV to get the port installed.  That wasn't true.  
Then I was told I'd have four rounds of chemo.  That became six.  
I was told I'd have one "push" med on day one, one on day two, and then one oral spread out over two weeks.  That wasn't true.  I'd be getting all three on day one.  
 Then I found out I had to go in again the day after infusion to get a shot for boosting my immune system.  
All of this jerking around in the space of three days.  I no longer knew what to believe.

So that day, September 20, when I started chemo, when I got more of the "different" info, I confess I freaked.  I insisted that I was NOT supposed to get all three at once, that one of them was supposed to be oral, this was not at ALL what I had been told, I had done the research on those meds and the oral version of that stuff was supposed to be much better tolerated   ----

Long story short, I threw a very uncharacteristic fit in the infusion room in front of a dozen other patients ensconced in recliners.  The nurses packed me off to the oncologist in a hurry, where I told him what he had told me, he agreed that's what he told me, and then he and the onco-nurse got into a huge fight in front of ME where she told him he had it wrong, that's not the way they do it, their procedure is blah blah, complete with her slapping the calendar on the wall.

The upshot was that I got my three infusions in a private room. Keep the crazy lady isolated.  Round 1.  I'm not sure who won, but it wasn't me.  The onco-nurse hasn't spoken to me (or looked directly at me) since then.

Bedtime.  I'll finish this tomorrow.

Sunday, October 23, 2016

5088 Thoughts on trumpery

Sunday, October 23, 2016

"Those that flee temptation generally leave a forwarding address...."


It's been a long time since I updated here.  There's lots of updates on the breast cancer, but I don't have time for those details right now.  Tomorrow, I promise!

In other news:

Trump has terrible legal advice.  He wants to sue the women who claim molestation, but it's a classic "he said, she said" situation.  He can't prove it didn't happen, and most of them can't prove it did.  Stalemate.  The backstage beauty contestants would win hands down because they have witnesses and his own words (to that foul radio guy, what's his name), and the woman who told at least six people about it when it happened, would win.  As for why no one complained when it happened, it's one of those things where you cringe and say nothing and shake it off because otherwise you'd be accused of making it up and be destroyed by someone much more powerful than you.  As for why now, he stood up in front of the world and claimed he never did anything like that, and that would thoroughly piss off anyone he did it to.  If he'd never denied it, it's unlikely anyone would have said anything.

Another example of bad legal advice, he doesn't seem to understand how the government works, that the president's power is limited by the Constitution, Congress, and the judiciary.  How come nobody pounces on him when he says things like, "I'll pass a law that...."  Presidents don't pass laws.  Dictators do.

You know, he could still win.  I'm sure there are people out there who would not admit to a pollster that they'd vote for him, but who then would because they see him as a grenade they could toss into the houses of Congress, and that sounds like fun.  Maybe he should use that as a new campaign slogan:  "Toss a Trump grenade!"  Sell "T-branded" grenades instead of those stupid hats.

OMG!  I just had a horrible thought!  Could you imagine the White House interior redecorated in televangelist-stage-style gold leafed thrones (like his apartment)? Cringe.

Saturday, September 24, 2016

5087 HOTW - Chief Hampton

Saturday, September 24, 2016

"Oh, my dear little librarian, you pile up enough tomorrows, 
and you'll find you are left with nothing but a lot of empty yesterdays. 
I don't know about you, but I'd like to make today worth remembering."
-- Professor Hill, "The Music Man"  --


Hi. Long time no update.  I'd been trying to get definitive stuff on the breast problem before I try to write about it, and it seemed like every day I'm up in the air but I'd know something more meaningful in another few days, and then that day would come and go and there'd be more stuff that was up in the air.  If it's frustrating for others, think how it must be for me.   One thing I've learned, though - ignore anything the doctors say, and believe what the nurses say.

So, anyway, I'll try to get an update on that topic either later today or tomorrow.

Today I have a Honey of the Week (HOTW)!  Haven't had one of them in a very long time.  I really truly haven't seen any that made my tummy tickle.  Today I found one.  Maybe I should call him HOTY!

You may have heard the stories coming out of mostly the south about clowns trying to lure kids into the woods?  Yeah.  I suspect it started out as a joke, and then some kids in other localities thought it sounded like fun, and now it's the latest dumb thing for idiots to do, either to make a bogus report, or to put a mask on and cause some excitement.  

I happened to read this article this morning about clowns showing up in a small town in Mississippi, and I was stunned by the photo of the local Chief of Police.  A HOTW if I ever saw one!  It seems he's not only a hunk (I'm a sucker for cheekbones and dimples, and he's got both), but he has some very novel ways of going after the bad guys.  Novel enough that they sometimes show up at the police station and turn themselves in.  

So I did some research, looking for better photos, and found out a little more about him.

This is a newspaper article about how he operates, and there's a video there,  and this is from a radio station about some of the controversy caused by his use of Facebook to address suspects, and his, um, less than friendly language on Facebook.  Which reminds me, he has a smooth soft voice in the video, something else I can't resist.

He sounds like a really cool character.  If you want to see how he uses Facebook, look for Tchula Police Department.

So, without further ado, my first HOTW in maybe years, Chief Kenneth Hampton:

If you want to check him out without the hat, and with maybe even a smile, see the videos at the links above. 


Bonus.  I don't know who this is or where I found him, he was just out there lurking in my HOTW folder, and I don't feel like doing an image search to find out anything else right now, but he's certainly worth "honorable mention":

Actually, I have to admit, this guy scares me a little.  He doesn't look like someone I'd want to snuggle next to.  But it's also true that if he were in a crowded room, I wouldn't be able to stop staring.


And just because, this from historian Jeffrey Herf in "The American Interest":
"Trump discovered what the classic demagogues of the 20th century understood: namely, that in a democracy it is possible to gain millions of votes by appealing to the worst in people. Trump, like Mussolini and Hitler but also like Stalin and Mao, understands that there are millions who enjoy hatred, who take pleasure in humiliating others, who find relief in giving a face and a name—Mexicans and Muslims today, Jews, capitalists and imperialists—to complex economic and social processes."

I'm amazed that no one has yet pushed Trump on his wonderful plan to eliminate ISIS.  I guess they know there's no point in trying, because there IS no plan, we all know that, but at least you'd think someone would point out that many people are dying horrible deaths every day, and if his plan would save them, then as a human being, if he has the tiniest ounce of humanity, he has a responsibility to divulge it so it can be put into action immediately, and all those refugees could go home.


Wednesday, September 07, 2016

5086 I wonder which way she went....

Wednesday, September 7, 2016

"If you are neutral in situations of injustice, you have chosen the side of the oppressor."
Desmond Tutu --


Well, we are finally rid of Phyllis Schlafly.  Can you tell I'm not a fan?  

She almost single-handedly defeated the Equal Rights Amendment the first time it was submitted to states for approval.  She said there's no such thing as marital rape, since when a woman marries, she has implicitly agreed to have sex whenever and however her husband wants, "Not now" is not an option.  She said that if your husband beats you, you are at fault for not keeping him happy.  She insisted that a woman should stay home and keep house, even while she herself was out running political groups and giving speeches all over the country. 

This wouldn't be so very bad except that she had enormous political and social power. Men ran everything, and they liked what she was saying.  Women who liked being treated like fragile princesses lined up behind her.

She fought so hard against the ERA because she felt that if it passed, women would lose all the legal protections, benefits, and advantages they had.  One of her most effective arguments was that women would be drafted and forced into combat.  A lot of people bought that.  And women would be forced into the job market, instead of having the option to not take an outside job if they didn't want to.  Goodbye afternoon soap operas and bon-bons.  Goodbye huge alimony and rent-free house if the slob left you.  And maybe goodbye to the kids.

Young women today have no idea what it used to be like, when a woman couldn't take out a bank loan for anything without a male cosigner.  When a husband could sell anything a woman owned without her permission or even knowledge, including a business in her own name that she had built from the ground up.  When ten fully-qualified women and one less-qualified man could apply for a job, and the job would go to the man (of course) and the women had no recourse whatsoever.  When a woman likely had no idea what her husband's salary was, what money was spent on, what the family finances looked like, where accounts and savings were, and she was given a household budget (an allowance, really) and that's all she knew, not because her husband was mean - that's just the way it was done.  Women were treated as no more capable than children, except where childcare was concerned, and the laws allowed it.  Encouraged it.

I'll never forget having coffee one morning with a neighborhood mothers' group, and the subject of the ERA came up, and one woman was very annoyed and declared, "Oh, that!  I don't need liberating.  My husband lets me do anything I want."

We couldn't convince her there was anything wrong with that "lets".

Goodbye Phyllis, fifty years too late.  I hope the door hit you on the way out.

Saturday, September 03, 2016

5085 Purple houses might be better after all

Saturday, September 3, 2016

"New truths go through three stages. First they are ridiculed. Second they are 
violently opposed and then, finally, they are accepted as being self-evident."
– Arthur Schopenhauer --


About 30 years ago, a homeowner near where I lived in NY was in some kind of dispute with the town.  So he painted his house  violent purple and orange.  With red and yellow and green florescent trim.  Oddly, none of his neighbors complained.  Everyone seemed to consider the whole situation comical.

Now there's a guy who, fifteen years ago, purchased a few hundred acres of farmland about 10 miles down the road from here, in a very residential area.  The township won't approve his building houses  on it.  They want either agricultural use, or commercial.  I used Google maps to check it out, and the plot is surrounded by homes worth probably $400K+ (small lots, two stories, likely 2,500 sq ft, attached 2-car garages, with minor details they all look pretty much alike, solidly middle class).  Commercial developers who have looked at the land and its location have determined that it's just not commercially viable.  The guy has been growing soy beans and other crops, but it's not "paying the rent", so to speak, and he's steadily  losing money on his investment.

So, he has announced that he plans to turn it into an enormous pig farm.  That's agricultural.  He doesn't need permission, since he won't be building permanent structures.  He's in active negotiations with a big pork producer who will actually run the operation, and expects to move in the first batch of (free range) hogs in October, gradually ramping up to thousands.

I can wait to see what happens next.  I doubt the neighbors will consider it comical.


Friday, August 26, 2016

5084 Calories

Friday, August 26, 2016

Rudeness is the weak man's imitation of strength.
 – Eric Hoffer --


I figure I've got to lose weight, because I have to fight the nicotine gain, and since since my ovaries aren't pumping out estrogen, most of that is coming from the fat.  Less fat, less estrogen; less estrogen, less potential tumor growth.

I started counting calories today.  By the time I'd finished supper, I had a total of about 900, maybe a little less, including the creamer in my coffee, and a one ounce bittersweet baking chocolate treat.  Today is a "no meat" day, I do that about two or three days a week, so that makes it easier to count. 

Then Daughter brought over an ear of sweet corn (fresh, boiled, no salt or butter).  I love her corn.  She always does them just right, sweet and tender.

I ate it.  Then I tried to find out how many calories to add to the total.

Some websites say 59 for a "small ear".  Some say 59 for a "regular ear".  Other sites say 135.  All the others are somewhere between.  89 seems to be popular.  Very few get into specifics like weight.  All I can say about this ear is that it was 7" long and had about 17 rows of kernels.

Maddening!  Whose numbers do I believe?  Whatever.  I think no matter what number I use I'll probably still be below the target 1100 for the day.

It's a sad truth that if I stick to canned and packaged foods, it's easier to count calories.  Something wrong with that.

5083 Still no idea what's going on

Friday, August 26, 2016

"Those who can make you believe absurdities,can make you commit atrocities" 
– Voltaire AKA Fran├žois-Marie Arouet --


Last week I saw the medical oncologist, but didn't learn a whole lot, except that we don't know much of anything until we get the Oncotype DX results.  I mentioned that I had no idea when the radiation was supposed to start, so he set up an appointment for me with the radiation oncologist, whom I saw yesterday.  Again, I didn't learn a whole lot.  One important thing is that they will do my radiation prone, the "drop the breast through the hole" position, so there is almost no chance of messing with heart and lungs.

I was under the impression that the radiation would be definite, and before any other treatments, but again, they're waiting for the Oncotype DX results.

If I need chemo, this group likes to do it before radiation.  We won't know whether chemo is advised until ... guess what.  And that might be another week.  Or two.  Or more.
So, chemo if required (and if I decide to accept it - I may not), then radiation, then the hormone stuff.   (Calling it hormone treatment is a misnomer, because they wouldn't actually be giving me hormones.  It's an estrogen blocker, blocks the receptors on cells.  Big deal.  It's still treating hormones as far as I'm concerned.  Menopause is a hormone issue, right?  With menopause you stop producing so much, and with the blocker you can't use what little you've got left.  Same kind of thing.  So there!)

So here I sit.  I can't make any plans for the next many many months because I don't know what will be happening when.
The medical oncologist  said that the estrogen blocker he'd want to use is called Femara (Letrozole).  So I did some research.  Apparently there are three blockers out there, and this is the one with the mildest side effects.  

Oh.  My.  God!

If this is the mildest, I'd hate to even contemplate the others.  Want to scare yourself?  Check out the user reviews on
 http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=femara&questionid=fdb4363_pem or 
Side effects include severe bone pain, joint pain, weight gain, insomnia, spontaneous bone fractures, headaches, ... to list a few.  

Yeah, some people it will affect more than others, so I sorted the reviews to see the positive ones.  They listed joint pain, bone pain, headache ....
Oh dear. If this is on top of my fibro, oh dear. On the other hand, it's possible it's no more pain that I usually experience, just in different places. These women might think it's so awful because they so seldom experience random pain, so maybe I'm conditioned to pain enough to just pass it off.

But really, I'd rather not have to find out.

The worst part is that you will be on this poison for YEARS!

You know all those women who go off to Europe or Mexico, or to fringe nutritionists, to get alternative treatments?  Now I know why.  Sometimes the price of continuing to breathe just is just too high.


Philosophical musings:

My theory is that everyone "has cancer" multiple times in their lives.  A cell somewhere goes rogue and doesn't behave as it should.  But the immune system recognizes it as "not mine" and kills it and its progeny very quickly, and you never knew it was there.  Only when the immune system does not recognize that there's something wrong, when the rogue cells somehow escape detection, does the person "Have Cancer".

Right now we attempt to excise and kill off rogue cells with poisons.  It's all we've got.  But in doing so, we also damage the immune system.  That seems counter intuitive.

It seems to me that we should perhaps be looking closely at what allows the rogues to escape detection, and attack that.  Looking at how to energize and direct the immune system.  (That's the clinical trial Jay was enrolled in, and it was sort of crudely working when he died, but it was so experimental that he wasn't allowed to enroll until he was so damaged by all his earlier treatments that his organs simply gave up.  He couldn't survive long enough to see success.)

So it bothers me a little bit that all the treatments planned for me are concentrating on the precise characteristics of THIS tumor.  It has been excised, wide excision with clean margins, and there has been no signs of metastasis.   Maybe we should ask why the immune system didn't detect it, and fix that?  Why do we assume that a recurrence would be the same tumor (progeny, escaped cells), and not a brand new tumor with different characteristics?  If this tumor is estrogen positive, then it makes sense for an estrogen blocker to prevent the growth of "children" of this tumor (although from what they're saying, there shouldn't be any), but why do we assume all future tumors would follow the same rules?  If they're thinking I could throw another tumor in this or the other breast, maybe we should look at why tumors got started in the first place, and why the immune system missed it, and attack that issue instead?

I'm just wondering.

Sunday, August 21, 2016

Saturday, August 20, 2016

5081 Lots of little stuff

 Saturday, August 20, 2016

"The big thieves hang the little ones."
-- Czech Proverb -- 


The breast.  I had hoped that after the surgery and lab reports I'd have a better idea of what's going to happen.


I got a tiny bit of additional info, and it's not the best.  The stage is still good, at T2aN0M0, and it's stage 2a instead of 1 only because it's .2 cm too large in one of three measurements to qualify for T1, and there's a lot of other good indicators.  So that's good.  However, there's a bunch of stuff they look at after it's removed to judge the grade of the tumor - how active it is, how "deformed" the cells are and so on, and I score 8 out of 8.  It's a very nasty tumor, high grade, as high as they get.  Not so good - or so I thought.

So, last week I had my first visit with the oncologist.  The first thing he said was, "Congratulations!   You are now cancer-free!"  

I gave him a look that said, "Yeah, sure, so why am I sitting here?  Let's not play that game, ok?"

I found out nothing useful.  I had assumed that cells would be sent out immediately after the surgery for an Oncotype DX test.  They check the genetic makeup of the cells and it gives all kinds of information, like the likelihood of recurrence, susceptibility to various treatments, and so on.  In fact, most oncologists no longer base treatment on the stage and grade any more.  Oncotype DX, although expensive and not covered by some insurance, is now considered the standard of care.

Anyway, it was NOT ordered automatically, and he had just received my files, and just ordered it (duh?) so it will be another week or two or three before we get the results and I find out whether I'll need hormonal therapy and/or chemotherapy.  In the meantime, I do still have to have radiation (Grrrr! Because I had the lumpectomy instead of the mastectomy I wanted.)

No one has contacted me yet about starting the radiation.  And I'm still having some kind of nasty reaction to the blue dye.  I don't know if that will delay stuff or not.



How to thread a needle.  Someone will say they can't thread needles, and then you see them hold the needle in front of them, squint, and try to push the thread into the eye.  Yeah.  That doesn't work.  It especially doesn't work if you wet the thread.  Here's a hint I've never seen anywhere before, but it always works.  

First, make sure the end is cut super bluntly, no trailing fuzz.  Now note the way the thread is twisted.  Put the end of the thread between the sides of your thumb and index finger, and roll it slightly, a tiny bit, in the direction that will tighten the twist.  Then pull the thread down until you can just barely see the tip between the thumb and finger.  Take the needle and slip the eye over the tip of the thread, holding the thread tightly and pushing the needle down between the thumb and finger.  Roll the thumb and finger a tiny bit up, so it's past the needle, but still gripping the tip of the thread.  Pull the needle down more, and you should find it on the thread.

Might take a little practice, but once you get it, it works first time every time.

My eyes are so bad right now (I'm about three years overdue for a prescription upgrade) that I can't even manage the huge eye on the sewing machine needle any more.  So I just remove the needle, thread it using the above method, and then put it back in the machine. 


Want to have a little fun?  Look up the word "trumpery" in the dictionary.  It'll probably be definition #2.


Donald Trump has been talking about an ideological test of "American values" for visa applicants (he doesn't seen to understand that there are different types of visas, oh well), to verify that they agree with things like religious freedom, gender equality, gay rights, and so on.  

I'm frustrated because I can't find exactly what values Mr. Trump is interested in testing.  Most pundits seem to think it's stuff like the short list above, but that can't be it, because those are all "disgusting liberal" values.  If we can't allow people into this country who would fail a test like that, then most of the population of the southern states and almost all of his supporters should be deported.

It's been Republicans who have fought and legislated against all those "values" over the past few years.  So it's gotta be other stuff, but what?

Comments from Trump supporters on this video insist that it's fake, that the interviewed people must be actors.  Uh, no, I've talked with a few Trump folks, and this is exactly what you get.  From the article linked below, "...current Republican congressional Rep. Jody Hice said that a woman should run for political office only if her husband consents to it since husbands have “authority” over their wives. Before you dismiss Hice’s views as being an exception, he easily won his election in 2014 and was vocally supported by well known conservative Erick Erickson."

This article is interesting, but I can't figure out how to link only the pertinent article, so ya gotta look fast, because it might scroll off the page:  http://www.thedailybeast.com/articles/2016/08/15/trump-s-ideological-vetting-plan-would-banish-most-republicans.html


This is super cute. I guess I didn't realize tortoises could have so much personality and would stand up for their rights. "MY ball!!"

Monday, August 01, 2016

5080 My clueless insurance

Monday, August 1, 2016

I mentioned that my medical insurance folks try to be very helpful, but next to nobody accepts my insurance.  They often send me emails or call me to urge annual checkups and mammograms and the like, and even offer incentives - like after I saw the doctor last month, I discovered a $25 gift certificate in my Amazon account, from them, for having a checkup. 

So, anyway, after the past two months of medical excitement, last week something rather weird happened.  I had just left the surgeon after the followup visit, was in a store looking for something to drink and munch on, and my phone rang.  It was deep in my purse and I had to dig it out, and I assumed it was Daughter calling for a report, so I answered it without looking. 

It was my insurance company.

The very young-sounding lady on the phone had called to urge me to get my annual checkup and mammogram, and embarked on an obviously scripted explanation of why it was so important. 

I exploded.  I'm afraid I was not very gracious.  Probably a lot of released tension.  I interrupted her and informed her that I'd had a diagnostic mammogram and ultrasound six weeks ago, had been diagnosed with breast cancer, had a slew of pre-op testing, had surgery just the week before, and had left my surgeon's office minutes ago, and I'm shocked that she didn't already know that!

This was off script, and the poor girl didn't know how to handle it.

Maybe I should feel bad, but I don't.

Wednesday, July 27, 2016

5079 Photos!

Wednesday, July 27, 2016

I forget where I got this: "If the Islamists laid down their arms, there would be peace in the Middle East. If Israel laid down its arms, soon there would be no Jews, Christians, or any other 'infidels' left alive in the world."


Daughter stopped by for the report.  She took some photos.  Here they are.

The red line high up on the breast is my reaction to the tape.  I always turn red along the edges of that thin transparent tape they use.
The blue spot is from where they injected the dye into the tumor to track the location of the "first-in-line" (sentinel) lymph nodes.  That spot isn't supposed to be there.  It surprised the surgeon.  It won't wash off.  It may end up as a permanent tattoo.  
The yellow is bruising.  The bruising above my hand looks worse in this photo than in real life.
Some of the fullness is swelling, but actually, not much.

A better view of the incision.  See how well the little old lady heals?  This is one week after surgery.

Sigh.  Can you see why I want a major reduction?  Nobody needs to carry that around.  By the way, I'm not lifting them here - that's their normal droop.

I rather like the way my hair looks.

5078 Hands are not visible if they're black?

Wednesday, July 27, 2016

Ain't no fun when the rabbit got the gun.

--I can find many uses of this, but I can't find the original source. Of course, no contemporary usage credits it, like it's supposed to be original to them? Nah. The earlier usage seems to apply simply to tables turning, to the oppressed rising up, like in country songs about battered wives. But my research also took me to some of the dark scary parts of the internet. The past few years it seems to be used most by people talking about an armed revolt against the government.


By the way, I strongly suspect that the reason the surgeon didn't want to do the mastectomy was that she had no faith in my ability to heal well from such drastic assault.  I think I proved her wrong.  Piss me off!


Police shootings in the news.  This is one that happened some time ago, but hasn't been in the news much, but I think it's one of the most egregious, most appalling.

Take a look at this photo:

The man lying on the ground is a health care worker.  The guy sitting is his charge, a kid or young man (age not given, but often described as a boy) with severe autism.  They are near a health facility.  The kid is holding a toy truck.  Someone called the police and said the kid was waving a gun.  The police arrived and got all excited. The caregiver lay down with his arms in the air as the photo shows and attempted to explain to the police that the kid did not have a gun, it was a toy truck.  He tried over and over.  The kid of course ignored all instructions to throw away the "gun".  So a police "sharpshooter" (quotes because he was incompetent) fired three shots, hitting the caregiver in the leg with one shot.

The police then handcuffed the caregiver's arms behind his back, and let him lay there for something like 20 minutes.

Now, here's where it gets even weirder.  The caregiver was lying down with his hands in the air the whole time.  I guess when the cops realized they'd screwed up royally, they claimed that they were shooting at the kid, who had ignored their orders and therefore deserved shooting (he's autistic, remember? and the caregiver had told them that)  and completely missed the (white) kid and "accidentally" hit the (black) caregiver.  Yeah, uh huh, so, um, why the handcuffs?  When you found out the kid had, in fact, a truck, why leave the handcuffs on and why no medical assistance for the caregiver?

As was pointed out in the Trevor Noah video, what is a black man supposed to do to avoid getting shot?  He can't walk toward the police.  Hands up or not.  He can't walk away from the police.  He can't stand still.  He can't lie down with his hands in the air.  He can't lie on his stomach, because then his hands aren't "visible".  What can a black man do to avoid getting shot?  Apparently, nothing.

As you know, I dated a black man for a long time.  He was respectable, intelligent, well spoken, law-biding, strong, and protective. But I'd seen him on a few occasions very nervous around police.  He knew there was no valid reason for them to target him, but he also knew that he had no power to stop very bad things from happening if we'd come up against the wrong ones.

Skip ahead to about 1:22 in the video:

 Here's the story from Snopes: 

5077 Lab report

Wednesday, July 27, 2016

"Education is what survives when what has been learned has been forgotten."
-- B. F. Skinner --


Saw the surgeon today.  Got the bandages off.  Got the lab report.  

I am healing beautifully.  Well, not beautifully, it's pretty ugly, but you know what I mean.  I can now wear a regular bra and do whatever I want.

The lab says the edges of the excised lump are perfectly clear, not only clear around what she removed (and she did go wide, as I had requested) but clear right up to (and including!) the centimeter around the tumor itself.  Two of the closest lymph nodes (what they call the "sentinel node" and one past that one) were removed and examined, and they are also perfectly clear.  Even though the earlier core biopsy said it was dividing rapidly, the size of the tumor was about the same as determined by the MRI of a few weeks ago.  

That was my biggest worry, and one of the factors in my decision to go ahead with the lumpectomy rather than searching for a surgeon who would agree to a mastectomy - I felt pressured by time.  My #1 priority was to get the tumor out of there before it decided to expand territory, travel, and set up shop elsewhere, and given the difficulty finding another surgeon who would accept my rotten insurance, I didn't feel I had the luxury of time.  Now I do.   We can clean this up later at our leisure.

So, altogether a very good report. 

Next I see an oncologist, and find out what the recommendations are for follow-on treatment.  I'm hoping that radiation will not be required (it probably will be recommended, but I can hope not), and hormone treatment rather than chemo (that's a probability).

Note.  This is important to know!  When there are multiple treatment possibilities, like mastectomy versus lumpectomy with radiation, you, the patient, have every right to choose which to have, which to reject.  No one can force you to accept any particular treatment, even if one is more highly recommended than another, as long as either is medically approved.  As long as the risks and benefits of one over the other are explained to you, you have every right to accept or reject those risks.  It's your body, and you can determine the course of treatment.  Your doctors also have the right to refuse to do one or the other if in their opinion it is not the best treatment for you.  In my case, my surgeon refused to do a mastectomy, but I also had the right to reject lumpectomy/radiation.  All I had to do was find a surgeon willing to do what I wanted (which, with my insurance would have cost time).  In fact, even with this surgeon, if I had flatly refused to even consider radiation, she would have done the mastectomy.  She did tell me that.

So, why didn't I just flatly refuse radiation in order to force her to do what I wanted?  Because I learned a long time ago that you don't piss off your waitress until after your food has arrived.

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.

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.