Monday, August 21, 2017

5108 Eclipse

Monday, August 21, 2017

Nothing much happened here.  We were supposed to get something like 73-78% (I'm not going to look it up again), and it was clear skies out there, but there was just a slight dimming as it passed.  I was watching the sun patches under the tree in the front yard, and saw no shadow move into them.  Birds didn't seem to react, either.  I don't understand.

The last equivalent eclipse I experienced was in 1969, I think, in Kingston, New York.  It was about the same percentage as this one, but I seem to remember it as much different.  It got noticeably darker and cooler, and you could see the moon's shadow move across the sun patches under trees.  Eerie.

I watched a live broadcast on YouTube of when it first hit land (Oregon?  I'm not going to look it up) this morning, and I made the mistake of reading the comments scrolling down the right side of the screen.  Screams of "FAKE!  I'm in Pennsylvania right now, and the sun looks just like normal!"  And so on.  Some people were displaying their smarts by pointing out that it requires a full moon, since a quarter moon or new moon wouldn't fully cover the sun.  

I despair. 

Others were excited because "It won't happen again for 100 years!"  It won't happen here for a while, but there are multiple solar eclipses every single year.  It's just that the vast majority are over the ocean, or desolate or inaccessible areas of Mongolia or the Russian taiga.  Also, the path is relatively short - one or two thousand miles altogether.  I felt sorry for that young lady in France who was begging folks to tell her when it would reach Europe.

I should know better by now - do not read YouTube comments!  It leads to thoughts of suicide.
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5107 Collisions at sea

Monday, August 21, 2017

There have been two collisions between US warships and large commercial ships in the Pacific in the past two months, nasty enough to rip holes in the steel.

I don't understand how that can happen.  It's not like the other guy came out from behind a tree, or from around a corner.

Duh?

Wednesday, August 16, 2017

5106 Medical update - eyes

Wednesday, August 16, 2017

As if surgery, chemotherapy, radiation, meds that make me ache, and three teeth pulled in one day weren't enough, I am now getting monthly injections in my eyeball.  Yeah.  In the eyeball.  Told ya it was icky.

I've had this eyeglass prescription for like five years now, so back in maybe early May when I noticed I was having difficulty reading street signs, I wasn't surprised.  It's about time.  Went to my optometrist.  Couldn't read anything on the screen with my right eye.  The big "E", but nothing else.  Left eye was fine.
She freaked and did a bunch of more tests, and informed me that she suspected macular degeneration, in both eyes, and recommended that I see an ophthalmologist ASAP.

Macular degeneration?  For many years I've had one of those grids, you know, all the little squares with the dot in the middle, on my refrigerator.  You're supposed to look at the dot with each eye, and check that the grid looks regular.  I really have been doing it occasionally.  Always looked just fine to me.



I called the optometrist's  first choice recommendation, and got an appointment several weeks out.  I gave them my insurance info, she assured me the accepted it, and my optometrist sent copies of my scans etc.

The DAY BEFORE the appointment, the ophthalmologist's office called to inform me that they didn't actually take my insurance.  Oops.  Appointment cancelled.  Three weeks plus down the drain.

I went online to my insurance company to find a doctor on their list of physicians, and there were no ophthalmologists listed.  The next Monday I called the insurance company, and got two recommendations.  I made an appointment with the first.  Two weeks later, that office called to ask what specifically I was calling about, because they noticed I was an adult, and their office handles mostly pediatric strabismus.  Another two weeks down.

So I called the second recommendation.  I actually made it into the office that time, and got examined.  When I told the ophthalmologist that the optometrist suspected macular degeneration, she shook her head. 
"Um, no, I don't do that.  You need a macular specialist."  Like, I'm supposed to know about the specialties, and who does what?  So I asked her to examine me anyway and see if she agrees with that preliminary diagnosis, and if so, can she recommend a macular specialist?

She said ok, and diagnosed wet macular degeneration in both eyes, the right more advanced, and gave me some names that she was sure took my insurance, one of whom she highly recommended.

Great.  After two months, we're making some headway.  In the meantime, the right eye has deteriorated.  It had gone from sometimes no noticeable problem on some days to now constant grayed-out blurred central vision every day, and the past couple of weeks I'm getting some roundish areas of sparkle.  Oh, and the grid on the refrigerator is now wavy - when the right eye is clear enough to see it.

Saw the finally right doctor on Friday, August 4th.  Exam.  I think it was last Thursday Daughter drove me in for the first treatment.  You know, I knew I was going to get a shot in the right eyeball, but for some reason I wasn't nervous at all, which surprised me!

The technician put several kinds of drops in my eyes, then several rounds of numbing drops, then a shot of Novocaine (!) very shallowly under the outer layer (I forget whether that was the doctor or the technician) which worried me at first because that crap hurts when you get it anywhere else, but I didn't feel anything at all.  At. All!

Then the doctor futzed around a bit, once for all of two seconds using a clampy thing to hold the eye open while telling me to look at the tip of my nose, then he announced all done.  I don't even know when I got the injection.

I said, "That's it?"  I asked him why we're treating only the right eye if both are degenerating, and he said that the right eye is wet, the left is dry.  The left may at some time go to wet, but for now we don't have to mess with it.  He also said that we can halt the progression, and with the least little luck we can probably even get regression and restore much of the right eye vision.

I'll get a shot in the eye of Avastin once a month now for I don't know how long.

When the numbing wore off, there was no pain.  That evening I had a small blood spot on the top, under the upper eyelid, but the next morning it was gone.

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I hate New Jersey.  I swear I didn't get old until I moved here.

Oh, and what bugs me the most is that no one will give me a new prescription for lenses, even just for the left eye, because "it will change as you go through treatment", so I STILL can't read street names until I'm almost on top of them.  No fair! 

Also, if you look up wet macular degeneration, you'll see examples of the vision loss.  I'm not that bad.  I can see big things with my right eye just fine.  I can't see detail.  I can see the microwave across the room, I can see the clock on it, I just can't read the time on it.  On good days I can read the time.
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Tuesday, August 15, 2017

5105 Medical Update - teeth

Tuesday, August 15, 2017

As reported earlier, I'm taking generic Femara.  After the first few weeks, I no longer have the hot flashes.  I do have bone, joint, and muscle pain, but I've always had that, so I don't know whether it's the Femara or not.  No big deal.

I have slight osteopenia in my left hip, so the chemo doc wants to put me on Fosamax  to protect my bones from the Femara.  That has its own set of side effects.  For some strange reason it especially likes to cause problems with the jaw bones, so I need to have all dental work taken care of now, because if there's anything wrong with the jaw bones, it won't heal.  When I was entubated for the lumpectomy, apparently they smashed a molar on the upper right, and shortly after surgery it crumbled, so something had to be done about that.  (By the way, every time I have been entubated, they've either broken a tooth or dislocated my jaw - which I don't understand, because when I was an EMT, we never broke anyone's mouth.  We never had to push that hard.  The opening you aim for is straight back there, and as long as you aim straight....)

So, dentist.  I found one, got an appointment right off, explained the situation and what I wanted done, and the time constraints.   He took xrays, and worked up a plan right then, said I had to pay for it ALL before he'd start, they have an arrangement with a loan shark if I don't have it up front, and said I had to follow his instructions and do everything he said or he'd refuse to treat me.  

If I hadn't been under time pressure, I'd have thought about it more.

His bill was $12,000, but he was giving me a discount so all he wanted was $9,000 paid in full before he started.  I don't have dental insurance.

I moved some money around online, called Schwab to sell some stock so I could replace that money to pay some insurance premiums and real estate taxes coming up soon, and wrote him a check that day, and the next business day he started.  Pulled three teeth, and did something involving lasers and scraping.

THEN I looked at the plan, thought about it, and did some research.  The broken tooth on the upper right did need pulling.  I'd had a root canal on that tooth  and it was capped or something, so I had no pain from it, but it still needed to be fixed somehow.  He pulled two more teeth on the bottom right because in the xrays, it showed blank areas under the crowns, just above the roots.  Neither of those teeth had been bothering me, and the xrays showed just blank spaces, there was NO INFECTION!  Now I wonder why they needed pulling.  It's possible that was just empty space, or packing.

The laser and scraping was root planing, on 1/4 of my mouth, three more quarters to go.  But I remembered that when he was poking around in my mouth, he dictated to the technician on that first visit  "periodontal disease, slight."  So given what I wanted when I came in, did I need that?

Plus, they gave me a special rotating electric toothbrush and a special mouthwash, which showed up on the bill.  No option.  No refusal.  My gums and palate are extremely ticklish and I told the technician there was NO WAY I'd be able to use the damn thing, my regular brush and routine seem to be doing fine, but, well, doctor says....

Now I got mad.  I didn't want to go back, called and cancelled my next appointment ($250 charge for cancelling) and said I was willing to pay for work done, but wanted a refund of the remaining $9,000 deposit.  The gal gave me an argument, said they couldn't refund anything because he "gave you a discount".

The earlier research I'd done before going showed glowing reviews of the practice.  I dug deeper.  Turns out this guy's license had been suspended for five years in 2010.  I found the actual legal consent decree he'd had to sign to get his suspension reduced to six weeks with the remainder of the time on probation, with a healthy fine spread over those five years.  He'd been suspended for doing unnecessary procedures (bingo), charging for materials not used, not offering patients the option of purchasing things outside (like the toothbrush and mouthwash, bingo) as the dental association requires, and not refunding payments when patients bail (bingo).

That was three weeks ago.  No refund yet.  I may have to sue the SOB.  And I WILL notify the NJ dental board.

So, that's been going on.

I may have to see another dentist.  I think he may have left some fragment of that upper tooth in there.

There's more. Eyes.  Next post for the really icky stuff.
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Sunday, August 13, 2017

5104 All the news that's fit to .... whatever.

Sunday, August 13, 2017


 "Trump: a poor person's idea of what a rich person is, 
a stupid person's idea of what smart person is, 
a weak person's idea of what strong person is." 
Fran Leibowitz, Chris Falcinelli, and others

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On Korea.  I almost died of eyeroll when Trump did his tough-guy act.  Having no concept of history or motivations, he's played right into Kim's hands.  The Kim dynasty is terribly afraid of revolution and of being deposed, so they've been ruling through fear, convincing the populace that the Americans want to invade and conquer them, and "only we can save you".  The people have no access to outside news/views, and they still remember the war in the 50's, so that used to work.  But that was a long time ago, and people are forgetting, so Kim needs to refresh that fear.

Please watch the following video.  This is an Australian guy who has lived in Japan for many years (Japanese wife and children and the whole bit), and he expresses exactly what the rest of the world sees.  I don't claim to know much of anything about international stuff, but I agree with his observations 100%.  And he's living in Japan, where if anyone should be freaking out like the US is, it should be them!  Unlike the US, however, they know what's going on.   (He's just driving and talking, so it's not necessary to actually watch the video.  You can just listen.)


[https://youtu.be/dlO3pVOPjqA]

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On Charlottesville.  This blog post from Greg expresses my thoughts perfectly.  Enjoy.
https://gregfallis.com/2017/08/13/many-sides/

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On Medicare and health care insurance.  I just realized something horrifying!  Republicans would love to gut Medicare, but are afraid to.  Medicare doesn't (normally) kick in until you are into your mid-60s.  So all they have to do is make sure that people who would cost Medicare the most (the least healthy seniors) simply don't make it into or much past their mid-60s!  Voila!  Medicare costs cut.

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On American Exceptionalism. I believe the following came from The Newsroom (2012–2014), an American drama television series created by Aaron Sorkin, airing on HBO, that chronicles the behind-the-scenes events at the fictional Atlantis Cable News (ACN) channel.
There's absolutely no evidence to support the statement that we're the greatest country in the world. We're seventh in literacy. Twenty-seventh in math. Twenty-second in science. Forty-ninth in life expectancy. A hundred and seventy-eighth in infant mortality. Third in median household income. Number four in labor force and number four in exports. We lead the world in only three categories: Number of incarcerated citizens per capita, number of adults who believe angels are real, and defense spending,

And with a straight face, you're gonna sit there and tell students that America is so star-spangled awesome that we're the only ones in the world who have freedom? Canada has freedom. Japan has freedom. The U.K. France. Italy. Germany. Spain. Australia. BELGIUM has freedom. Two hundred and seven sovereign states in the world, like, a hundred and eighty of them have freedom.

Now none of this is the fault of a twenty-year-old college student, but you nonetheless are without a doubt a member of the worst, period, generation, period, ever, period. So when you ask what makes us the greatest country in the world, I dunno what the f**k you're talkin' about.  

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On art. I discovered the Museum of Bad Art, and therein discovered the painting "Lucy in the Field with Flowers".  I am madly in love with it, and have scoured the internet trying to find a print.  Doesn't exist, except as a small part of a poster for the museum.  I don't know why I like it so much.  I just do.
http://www.amusingplanet.com/2017/01/the-museum-of-bad-art.html   Scroll down a bit, it's the second painting on the page.

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On my health.  Stuff going on.  NEXT POST, I promise.
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Thursday, June 08, 2017

5103 I'm still here, and there, and ....

Thursday, June 8, 2017

Rabbi Julius Gordon: "Love is not blind - it sees more, not less.
But because it sees more, it is willing to see less."

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Wow.  It's been something like six weeks since I updated here, and a month since the end (May 8th?) of radiation.  My absence was not on purpose - it's just that there were higher priorities, and very little energy.

With the doctors I kept denying that I was fatigued.  I was wrong, I guess.  It crept up on me so slowly I didn't recognize it.  After the first two rounds of chemo I didn't feel a need for daytime naps at all, and I guess that was my definition of fatigue.  On Tuesday, May 23, I woke up in the morning with all kinds of energy - suddenly!  It was as if someone had flipped my on-switch overnight.  Really, it was really that sudden.  Pow!  I'm back!

And I can't believe how bad the house is.  I hadn't done laundry in months.  The piles of dirty clothes were huge (yeah, I have a LOT of clothes, I've worn things in the past few months that I hadn't seen in years).  Literally mountains.  I can't remember when I last changed the sheets, and it's hard to change the sheets just yet because the bed footboard and the end of the bed are covered in "can get another wearing out of this maybe" clothes.

The day after I finished the radiation I got started on the anti-aromatase FEMARA® (letrozole), which sort of blocks estrogen.  There's some confusion as to whether my tumor was estrogen-sensitive or not, so the doctor decided to err on the side of caution.  If I can tolerate it, I'll be taking it for five years.  Some of the possible side effects are significant, but so far all I've noticed is hot flashes - about 8 or 10 short and tolerable flashes a day.  That's kind of funny - when I went through menopause I had a total of two hot flashes the entire time.  

Other side effects include muscle, bone, and joint pain, and I've got that, but I've ALWAYS had so much random pain that I can't tell what's the normal pain and what might be the medication.   

Well, we'll see where it goes.

Last Friday Daughter and I wandered all over Ikea (a big store) for almost three hours, and I was very proud of my energy - didn't need to sit down at all.  Saturday I was still fine.  Sunday my hips and thighs rebelled, and I'm still achy.  I'll have to start a regular exercise program.

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It took me forever to clear up the medical bills mess.  The breast center, the oncology area (chemo and radiation), radiology, and some but not all of the doctors bill separately.  I have to register anew every time I go to the medical center, and every day's procedures (every registration) gets a new account number.  The first bill will be itemized, but any subsequent reminders for the same day won't say anything about what it's for, just that X dollars are owed.  I was often confused as to whether or not I'd already paid it and my payment and the reminder had crossed in the mail.  Sometimes when I registered they wanted my share of the out-of-pocket up front, but mostly they didn't.  The upfront payments were estimates, since it hadn't gone through the insurance yet, and then when the "real" bill arrived, it might or might not show the upfront amount I'd already paid.

So as I got more and more tired, it got harder and harder to figure out what the status was.  It got to the point where a few bills went to collection, and then it got even more complicated, since the collection notices didn't say what the account number, procedure, department, or date of service was - just the amount due, which was not necessarily unique enough to match up to a bill.  

Sigh.

So once the on-switch got flipped and I could think again, I spent some time in an few billing offices and got it all straightened out.  You know those up-front payments that didn't show as credits on bills?  It turns out that apparently those amounts were credited to earlier bills (with no notice to me), so the nice ladies in the billing offices were able to hand me several older bills with "Don't pay this one, or this one, or this one...) written on them.  The only way I'd have known not to pay them would have been the lack of "overdue" reminders.  

This, by the way, has been my experience with hospital billing for centuries.  There are some real horror stories with Jay's billing.  Albany Medical Center had one, count 'em, one, little old lady handling all billing and payments, and she was easily confused.  

Last night, at midnight, I drove to the post office and dropped the last batch of checks and payment slips in the outside mailbox.

Very large load off.

There will still be bills to come.  I decided to keep the implanted chemo port because I'm sure there will be future blood draws and possibly other scans possibly with contrast and my veins are not cooperative for stuff like that, so I need to go in and have the port flushed every six weeks, and I have to see the chemo doc every four weeks (but I suspect that will end up being every six weeks, since he's in that same area).  But those bills won't be arriving in quick succession, so I should be able to keep on top of them.

Getting late.  Bye for now....

Sunday, April 30, 2017

5102 Radiation Flagellation

 Sunday, April 30, 2017

Sometimes you can't really know what someone is saying to you. You hear the words, but sometimes the words carry a meaning different from their dictionary definition. If you have no other basis for interpretation, you interpret from your own base. In an intimate relationship, the only way to fully understand the other person's messages, or lack thereof, is to understand their motivations, how their mind works, what their concerns and priorities are. If you don't understand that, you don't have an intimate relationship. You're just skimming along the surface. -- Me --

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 Taking a shower the other day, I found myself wishing someone would invent MY shower.  It's kind of like a car wash.  Jets shoot water straight out from the wall for the full length of the body (temperature, height, and pressure adjustable).  Then you push a button and soapy water comes out of the jets, covering you in foam, and then shuts off.  There's a pause while you can either scrub yourself, or stand next to a rotating bar covered with strips of that stuff that's used for those scrubby puffs (you know, the material that doesn't hold water and rinses clean) which slaps you like a mean massage.  Another button gets you a full body spray rinse with clear water.  Another button gets jets of hot air.  Clean, dry, and done.  If it's good enough for cars and dishes, why not for people?  I want this!

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In many Victorian novels, a woman is described as having a "long upper lip"  (or sometimes a short one, but usually long).  I was never too sure how to picture that.  Is that a wide mouth?  Then why not describe it as a wide mouth?

I recently found the answer, I don't remember where, but here it is.  That central groove from the nose to the upper lip is called the philtrim, and it's the philtrim that's described as long or short.  So a woman with a "long upper lip" doesn't have a long lip at all - it's that she has more distance between her nose and mouth, and that was once considered more aristocratic (a long face).

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I'm almost finished with the radiation.  The last should be May 8th, I think.  I say "I think" because they keep changing things on me.  

Back when the plan was based on the needle biopsy lab results, I was told I'd have a lumpectomy, four rounds of chemotherapy, then 33 sessions of radiation, and then an anti-estrogen for a few years.  After the lumpectomy, after someone (oh, yeah, that was me) thought to check the lab results on the excised tumor and it was discovered the report was drastically different (I still think they screwed up and mixed up my needle biopsy with someone else, because it's so very different), I was told when starting chemo that I'd have six rounds instead of four.  That grew to eight.  

When I started radiation, I was told I'd have 28 sessions of whole breast, and 5 "boost" sessions at the end, which is electron (I think) radiation focused on the tumor bed, for a total of 33.   Last Tuesday was session number 24.  

My regular radiation oncologist was on vacation last Tuesday, so I saw a different doctor, and he was concerned because my skin was peeling in the crease under the breast, so he decided my skin needed a break, so the next day we'd start the boost, and then finish the "last two whole breast sessions" at the end.  I pointed out that there would actually be four more whole after the five boost, and he said there'd be seven boost, not five.    My head is spinning.   I wish they'd stop changing things on me.

Another reason this bothers me is that everything I've read cautions that the whole breast radiation must not skip any sessions, since it must be tightly consecutive to be accumulative (I guess weekends don't count, eh?).  And there was one Monday we had to skip because the machine was down.  So, uh, will those last two be wasted effort?  

I hope the regular guy is back by next Tuesday.  I'll have the fifth boost that day, and maybe he'll say to go back to five?  

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Everybody says that the radiation doesn't hurt.  That's true.  The machine buzzes for a few seconds, and you feel nothing.  Everything else I read said there may be some skin problems, like a bad sunburn.  Sometimes the skin gets really bad, like blisters, weeping, and yuck.

I've got a lot of red.  The worst part is in the crease under the breast.  That got fiery red, then grey, then started to peel (but no blisters).  That's why the substitute doc decided to "take a break" and do the boosts now.  Where it peeled it's new pink skin, and it's not at all painful. None of the skin is painful.

But everywhere I've read has said the internal breast shouldn't hurt.  Some of the scar tissue in there might get hard and ache, stuff like that.  But wow!  I HURT!

I mention the pain in the breast to the doctor every Tuesday, and he just passes it off.  Like he thinks I'm hysterical or overreacting.  On the outer side, toward the underarm, it feels like someone has grabbed a handful of breast inside and is squeezing and twisting it.  Not all the time.  Randomly, a few times a day, for like 20 seconds, which is long enough, believe me!  On the inner side, near the sternum, that's like bee stings inside there.  Three times in the past five days it's felt like someone was stabbing me over and over with an ice pick.  Twice I was driving home from a session, on the Garden State Parkway at the time, and had to pull over until it stopped.  I hiss and ouch ouch ouch with every stab.  

I can't wait to stop beating myself up
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Monday, March 20, 2017

5101 Tattoo!

Monday, March 20, 2017

We need a president who is fluent in at least one language.

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I now have seven tattoos!  They are tiny black dots, three on my back, three on my chest, and one on the back of my left upper arm, acquired last Tuesday, and to be used to position my body in exactly the same position for all of the radiation treatments.  I can barely see them, they're that tiny.  

Well, they scrapped any musings I may have had regarding any "real" tattoos.  They HURT!  One little poke each, and it hurt so much I can't imagine getting multiple pokes - and I've had two babies with no anesthesia whatsoever, and no yelping, so it's not like I'm a wimp.  I've just got this thing about people poking holes in my skin, I guess (which, actually, is why I opted to have the babies naturally in the first place).

I go in tomorrow for a "dry run".  The treatment is done with me lying face down on a framework that has the right breast falling through a hole, and the beams go across that breast.  This is supposed to avoid exposing the lungs and heart etc.  That framework doesn't look like it's made of lead, so I don't know about that....

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The Angel is no longer my tax guy, since I fired Piper.  I needed to find someone down here, so I'm using the folks (a husband-wife team) who do Daughter and Hercules' taxes.  

I took my packet in to him on Sunday.  He was very impressed that I had everything separated and clipped, with sticky-tab labels and all.  He showed me a few files from other clients, just big jumbles of forms and papers.  I can't imagine how disorganized they were.  How do those people know if everything is there?
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Tuesday, March 14, 2017

5100 The "Blizzard"?

Tuesday, March 14, 2017

A lethal dose is also a lifetime supply.

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We were supposed to have a huge blizzard today, 12 to 18 inches of snow.   I don't know how much we actually got, because by the time I got up this morning, the snowfall had turned to sleet, which soaked into the foot or so that was already on the ground, and turned it all into something like 6 inches of ice.  

It's miserable.  Very difficult to break up, let alone shovel.

I have to see the radiation oncologist tomorrow, so it's now 9:15 pm, and my lawn/snow guy and his helper buddy are out there now working on it.

I felt so sorry for them I paid double.

I hope I can get down the driveway tomorrow without sliding.

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Apparently the country house is getting it much worse.
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Monday, March 13, 2017

5099 I've got to purge memories....

Monday, March 13, 2017

The reason the washing machine eats one sock is because
 if it ate the pair, you'd never notice.

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I've been inundated with scenes from my past a lot lately.  The easy conclusion is that I've been feeling mortal, and need to "examine my past", but I don't think that's what's happening.  I suspect it's just that my life is a lot more restricted these days.  I don't go anywhere, don't do anything, can't make a lot of plans because I don't know what my health or schedule will be, so I have a lot more time to mull things.

One scene is from college days.  There was a whole group of us in the Husky Lounge sitting around a table talking, when a guy walked up to the table and stood next to a seated young woman who was talking about something-or-other.  Without saying a word, he unzipped his pants and flopped out his penis, inches from her face.

Now, this was shocking because it was a crowded public space, full of students grabbing a soda or burger between classes or playing cards.  It was 1963 or so.  Alcohol was difficult to obtain, you could be expelled for drinking at all anywhere, and drugs were virtually unheard of, so I don't know what his reasoning or excuse was.

Anyway, I have admired that unknown young lady (I didn't know her personally) for more than fifty years.  Without pausing in her speaking, without so much as turning her head, by peripheral vision alone, she bent her elbow, raised her hand, gripped the offending member tightly, and JERKED it toward the center of the table as hard as she could.  When she let go I swear it went sproing!

The guy doubled up, yelped, and stumbled out, and she didn't even blink.  Just kept talking.  The rest of us at the table, well, nobody said a word, but a photograph would have caught us sitting ramrod straight up with huge round eyes.  Nobody said anything.  

I've often wondered what that was all about, and whether he suffered any damage.  

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Something different that has been intruding on my thoughts all day today is my high school class ring.  They were distributed on like the last day of school.  The boyfriend at the time insisted I had to immediately give it to him to wear on a chain around his neck.  That was "the thing" at the time, and it would be the height of disloyalty not to present it to him.  So I did.

[Elvis Presley - Wear My Ring Around Your Neck] 


I broke up with him when I went to college, so (wonder of all wonders) he gave it back.  In college, it was not cool to wear a high school ring, so it sat in my jewelry box for a year, and then I started dating Ex#1, and he wanted it.  He "lost" it when I left him and we divorced.   I think I actually wore the damn thing maybe three times.

I  never got a college class ring because I graduated a year early, so I wasn't on the list to be offered the opportunity, and by the time I thought of it, it was too late.  (They still have me listed under the wrong year, so I get the reunion notices a year late, and I barely made it into the correct yearbook.)

Somehow, I still feel deprived.  I really do miss the high school ring.  It was unusual - rectangular and inset instead of the usual mounded round.  Very pretty.
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Sunday, March 05, 2017

5098 March

Sunday, March 5, 2017

Trying to get rich by playing the lottery is like 
trying to commit suicide by flying on commercial airlines. 

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 I an in the midst of an  ocular migraine right now.  It started with the small circle of zig-zags about 10 minutes ago, and has grown to the full field already.  No headache, just the visual disturbance.  We'll see where it goes.

I looked up my past ocular migraines:
1996
02/25/06
12/05/06
05/12/07
07/20/07
11/11/10
10/13/11
06/06/14

03/05/17 (today)
This blog has a real use after all!

I thought I'd had three - the first when I was helping a friend move, the one where I'd lost names for a while, and this one.  I'm a bit shocked that there have been so many.

---------------------------------

Our weather has been weird.  We'll have three days in the mid-70s, and then it will suddenly drop back to freezing for four days.  Rinse, repeat.  I don't understand, and I'm very tired of it.

-----------------------------------

I have an appointment with the radiation oncologist at Monmouth on Wednesday the 15th, to start radiation planning.  

Sloan Kettering has opened a cancer center only seven miles from my home, and I wanted to switch to Sloan Kettering for the radiation, because Monmouth would involve an eighty minute round trip every day for something like six weeks, bleck.  But Sloan Kettering doesn't accept my insurance.  I made some calls, back and forth between S. K. and my insurance to try to get authorization to go to S. K., and it might have happened, and then one day I realized I was avoiding making the calls.

I don't know why.  Maybe I'm just too tired.  I hate the telephone.   And because it would be out of network, I'm pretty sure the out-of-pocket would be a lot higher.  (Not that cost matters that much.)  And it's only about six weeks.  I don't think I'm depressed, but, well, I just don't feel like fighting.  I quit trying.  I'm just tired.

My final chemo infusion was February 14.  Every cycle has been different - some easier than others, some harder, but in almost every three-week cycle I was feeling lots better within a week, and much better within two weeks.  This last cycle knocked me out.  I'm not sure I could handle another.  Every previous cycle, the onco doc asked me if I had any mouth sores or extremity numbness, and I'd always said no.  This time I had about a week of some kind of tender sore on the roof of my mouth, and a few days of intermittent numbness in the tips of my fingers.  That's all better now.

I still feel awful, and I'm starting the third week.

Nausea has not been a problem.  That problem seems to be solved, but you still feel crappy all the time.  An acquaintance who is in chemo tried to describe how it feels:  it doesn't really feel like you're sick, or even like you're coming down with something, it just feels like something is terribly wrong, and you can't put your finger on it.  (Not surprising that something feels wrong - every cell in the body is being poisoned.)

After thinking about it, I can describe it for me.  It feels like I've been pumped full of air, like a bag of potato chips, and it's causing pressure on everything inside me.  Pressure on my heart, lungs, kidneys, liver, intestines, muscles, everything, everything being squished, and the excess "air" itself makes me weak.  I ended up giggling thinking that, because ever since starting chemo I have had a lot of flatulence.  A LOT!  So the thought of being full of air was, um, interesting.

-------------------------

It is now much later.  The ocular migraine finished quickly, but midway through the above paragraphs, I discovered I couldn't write.  I couldn't put together sentences that made sense.  I knew what I wanted to say, but it came out wrong.  After my last ocular migraine I couldn't remember or recognize proper names for a half hour or so.  This time I could compose sensible sentences in my head, but when I tried to write/type them they made no sense.  Words were mixed up, spelled wrong, and for some reason every third word was "feel".  Weird.  No problem with names like last time - I tested me a little.  

----------------------------

I've been sleeping badly lately, and I don't know why.  I do know I involuntarily wake up at about 6:45 every morning, and I wake up furious.  Absolutely spitting mad.  The neighbors across the street have a totally untrained pit bull, and I guess they put him out in the morning (fenced yard), and the damn dog barks CONSTANTLY and angrily and insistently and loudly at something, maybe another dog in a yard on the next street over, for an hour and a half.  No breaks.  Constant.

I doubt that the township has effective animal control, and I doubt I could get anyone to come out to hear him at that hour anyway.  I can't be the only person disturbed.  On the other hand, most other people are getting up to go to work then.  It's bad enough that I have toyed with the thought of doctoring some hamburger (no, that's not something I could do, but it's nice to think about it).

I'm mad at them anyway.  They have made no effort to train the dog in any way.  When the dog is outside, the woman will open the door and yell, "Cody!  Stop jumping at the fence!  Get in here!  Go in the house!" and gets angry when he doesn't obey.  Does she really think the dog understands random English sentences?  I've noticed that trait with most dog owners around here - they have no concept of how to train a dog.  Or even why.
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Wednesday, February 22, 2017

5097 Caution

Wednesday, February 22, 2017

I keep hearing, “Nowhere in Humpty Dumpty does it say he's an egg.” 
 That's because it's a very old riddle!  That he's an egg is the answer, not the story, so of course it's not given.

--------------------------------------------------------------------- 

A post or two back I recommended writer Lawrence Block.  I have to withdraw that recommendation.  Some of his books contain scenes of nasty sex.  I suspect it has a purpose, perhaps to lead the reader to distaste or dislike for some of his characters.  

Perhaps it works too well.

Blech.
.

Saturday, February 18, 2017

5096 Wasted reading time

Saturday, February 18, 2017

Mosquitoes are dirty used needles that fly.

========================================== 

I did something today that I have never done before in my life.  I quit a book.  Done.  Finis.  Threw it across the room less than half read.

I hear and read about other people who get partway through a book, and set it aside as not being worth the effort.  I never do that.  I struggle onward and (eventually) finish every book I start.  Sometimes it takes a while.  The House of the Seven Gables, for example, required literally years of coming back to it, but eventually I did finish it.  There were a few others like that.

It's not that I'm especially virtuous or anything.  I'm just pretty careful about what I pick up.  I choose books based on reviews, recommendations, or skimming in the bookstore.  Buying books online makes it a bit harder to skim, so with crap like that shades of purple thing, I sometimes get stuck.  It arrived, I skimmed, and just from a paragraph or two here and there I knew it was so poorly written it would drive me crazy, so I never even started actually reading it.  Stuff like that doesn't count.

Well, I stupidly fell for Michael Crichton's sales numbers again. 

I've read Crichton before, and every time I end up annoyed.  He can't tell a story!  It's like he immerses himself in the topic, learns all the buzzwords, loads up on details, and then writes 300 pages of everything he has learned about the topic, like he wants to show how smart he is, and half-heartedly wraps a thin story around it so he can call it a novel, rather than a textbook.

I got 141 (of 431) pages into Airframe and gave up.  I'm tired of page after page of details on airplane parts, repeated over and over, and thin characters who seem to serve just to spout that stuff.  It really is possible to give us as much as we need to understand the situation, Michael, without page after page of detail!

And then, of course, I remembered that I'd had the same thoughts reading Crichton in the past.  Phooey!  I have a very poor memory.

If you want good mystery, try Lawrence Block.  I've read two of his books recently, and enjoyed both.  

(Yeah, I know the color on the "shades of" thing is wrong, but you know what I meant, and I didn't want it to show up in searches.  Ok?)
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Monday, February 13, 2017

5095 Disappearing varmints

Monday, February 13, 2017

Girl Scouts is a brand-name cookie company
that gets away with child labor.

==========================================

Remember when cable TV subscription meant no commercials on their proprietary channels?   Your monthly subscription payments were supposed to eliminate the need for commercials.  That's what they told us, anyway.  

I got Sirius radio on my car seven years ago, and back then there were no commercials.  Now not only has the subscription fee doubled, but I'm hearing loads of commercials.

I don't understand....

Well, actually I do, I just don't want to.

-----------------------------------------

My neighborhood varmints have disappeared!

When I first moved in here, every evening there were bunnies in the front yard.  Almost every evening an opossum would wander onto the porch, and a family of raccoons would raid the neighbor's garbage cans.  (According to neighbor George, the raccoons had been living in the buried truck in my back bank for decades.)

We had at least two regular skunk visitors.  I know there were at least two because one of them had only half a tail, so he was easy to identify.   They were totally unafraid; one walked across my foot one evening.  

Twice deer cut through my yard while I was standing there, and one evening two does sauntered down the middle of the street, heading toward the bay. 

And we had loads of squirrels.

In short, my tiny yard was full of varmints. 

I'm seeing a lot fewer seagulls and terns, too.  There used to be for years a pair of year-round resident swans on the lake out back, and I don't recall seeing them in at least the past year.

I slowly became aware over the past two years that they all seem to have disappeared.  All gone.  All the beasties.  All but the squirrels, and there are a lot fewer of them.  

What happened to them?  Nothing has changed, not that I know of, anyway.  Poison isn't likely, given the diversity.  Coyotes or foxes are unlikely, because they don't usually get squirrels.  Dogs don't run loose here, but cats do, and I hear outdoor cats are disappearing, too.

I don't understand.  It worries me.
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Wednesday, February 08, 2017

5094 Strange weather.

Wednesday, February 8, 2017

Why do we say “hair” when we mean lots of it,
but “hairs” when we mean a few?

==============================================

It got to 60 F this morning.  Now the temperature is dropping, it's 43 F at 3 pm, and we are supposed to get several inches of  snow this evening and tomorrow.

I don't understand.
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Saturday, February 04, 2017

5093 Rigged election? Yes, but not the way Trump thinks.

Saturday, February 4, 2017

One of the biggest problems facing the world today is
overpopulation, and if the religious types want everything to
be according to their version of God's plan, well, perhaps
they should recognize that homosexuality might be part of
God's plan to stem overpopulation, the "natural" way.  A gentle
way.  The other ways are unthinkable. -- Me –


============================================ 

Oh!  Oh! I forgot!  Don't know how I could have forgotten given all the talk of rigged elections and voter fraud! 

I voted on the appointed day at my assigned polling station, the local VFW.  The machines, two of them, were the kind that are the size of a refrigerator with the big vertical screen, and the curtains that swung open and closed.  The volunteer in charge of the machines checked my ticket and pointed to the one on the right.  I went in, and closed the curtain.  

The screen looked just like the sample ballot that had been mailed to me, and that I had studied before coming in.  Across the top was a long chart of candidates for federal offices, names down the left, and then party affiliations listed across the chart toward the right.  It was a touch screen, and you were to touch the check-box next to the candidates you wanted to vote for.   Then, below that, on the left, there was a box with the text of a proposal about allowing casinos other than Atlantic City, with yes/no boxes.  In the middle bottom was a box for some local office.  On the lower right was school board choices.  At the very bottom far right was the huge "cast votes" button.

So, I went down the top list, names and check boxes on the left, and made my selections.  The check boxes all lit up.  I ran down it again to check that all the correct ones were lit.  They were.  Remember, this thing was BIG, and I am only 4'8.5", so I had to look up for this part.

Then I moved down to eye level to the gambling part, read it through to make sure it said the same thing as was on the sample, and made my choice, and verified that the correct box lit.  Then my eyes moved right to the local part, made my choices, verified that they were lit.

Then my hand moved to below the school board to the "cast vote" button on the bottom far right, and I was about to press it when --- something told me to check the whole board again  ---

I am registered independent.  I rarely vote a straight ticket.  I do my research, and I scatter-shoot.  I have even on occasion voted third party.

Imagine my disbelief when I looked back up at the federal section, and discovered that ALL THE CHECK BOXES FOR DEMOCRATS WERE BLANK!!!!   All my votes for Democratic candidates were thrown away!  I quickly went through again and touched the boxes, and they turned on again, and I quickly hit the "cast vote" button on the lower right, watching to make sure they stayed on.

How many people had followed the top-left-down-right-right-bottom path without looking up again to check before hitting that red button?  How many Democratic votes were thrown away, and nobody noticed?

When I left the booth, I told the volunteer what had happened, and he refused to believe that I hadn't accidentally cleared those boxes myself somehow,  even though it was obvious that those boxes were too high for me to have brushed them accidentally.

I didn't pursue it further, because there's no way to prove what had happened.

So no, I have no faith in the results of the election, but not for the same reasons as Trump.  But there's nothing anyone can do about it, and at this point in my life, I don't have the energy to stir up a hornets' nest that is doomed to failure.

5092 Almost finished with chemo.

Saturday, February 4, 2017


We get heavier as we get older because there is a lot 
more information in our heads.
So I'm just really intelligent and my head can't store 
all that information, so it has to be stored other places.
That's my story and I’m sticking to it.

================================================

Well, a major update.  I'm in the middle of my seventh round of chemotherapy, will start the eight and last on February 14th, and then on to the daily radiation.  I am tolerating the chemo so well that for the past two rounds we skipped the Neulasta (immune system stimulater) because I figured out that it was that shot that was causing me to feel so icky in week one of each round, and on every previous blood check my numbers were (to use the doctor's term) robust.  

Round five was interesting - I had an allergic reaction to one ingredient of the mix that resulted in itchy red hives all over my entire body.  Claritin quickly took care of that, so now I take one tiny Claritin every day.

They had told me that my hair would "thin" some, but I wouldn't go bald.  "Thin" turned out to be about 90% of my hair.  I have very little left on my head, and I'm pretty much bald in other interesting places.  The doctor was happy to hear that, actually, because he was beginning to worry that I was tolerating it TOO well.  I gave up on my hair and cut it to about two inches, and just slick it back with gel to cover the nearly bald spots.  Doesn't bother me at all.  I can tell it's trying to grow back, because there are short fine angel hairs that stick up here and there.

Yeah, the fatigue is building.  I don't want to go anywhere or do anything, but it's not so bad that I want to take naps.  Don't care to walk very far, for some reason my thighs rebel, so early in January I got a handicap parking placard, but that's when we started skipping the Neulasta, so I haven't had to use it yet.

There was a question as to why I was getting CMF, when there are newer treatments out there.  CMF has been around since at least the '90s.  It's OLD!  Well, when the oncologist told me he chose CMF because it wouldn't cause the side effects that the newer ones did, I got worried that I got CMF because of my age (frail little old lady that I am (NOT!)), and maybe he thought I couldn't handle anything more nasty, so I did some research.  There are clinical trials comparing CMF to other newer chemotherapies, and, in particular for what I have, triple negative breast cancer, it turns out that CMF works just as well as all the others, with fewer side effects.  Any differences in outcome were like 1% or less, which is negligible, really.

The biggest news is that Memorial Sloan Kettering has just in the past few months opened a cancer center only 7 miles from my home, an easy 13-minute drive.  The surgery and chemo was at a breast center a 40-minute drive away, which wasn't so terribly far when I'd make the trip two days in every three weeks (Daughter went with me only for the first cycle).  But daily?  For like seven weeks?  That's a trek.  So I'm looking into having the radiation (prone, must be prone) at Sloan Kettering.  We'll see.  I'll also be able to get second opinions there on other stuff, too, like the follow-on treatments.

--------------------------------------------------------

Politics.  I've been freaking out just like most of the world, but funniest thing, it wasn't until yesterday that I realized, "This is REAL!  It's not a comedy skit that'll be over in a few weeks!  This is IT!  It's not a joke!"   Well, it is a joke, but it's no longer funny.   Chemo didn't nauseate me but what's happening in Washington does.  Bannon?  Cheney redux, but with less political savvy and fewer brains.  http://nymag.com/daily/intelligencer/2017/02/report-bannon-had-to-be-reminded-he-wasnt-the-president.html

(Does anyone know what happened to the Hatch Act, a 1939 federal law holding executive branch employees must "maintain a federal workforce that is free from partisan political influence or coercion"?)


I sort of was for Bernie, but I knew he'd never get the nomination.  I think the DNC realized that as soon as he was nominated the RNC would be screaming "Socialism!  Communism!", and the exact same people who voted for Trump would fall for it.  Bernie might have got even more popular votes than Hillary, but the electoral college fallout would have been the same.  Same people, in the same states. 

The website https://www.track-trump.com/ is updating daily on promises made, and actions taken over the first 100 days.  It's an excellent source for what's going on, presented without commentary.   

---------------------------------------------------------

Remember Matt and his dancing around the world?  At 0:14 in this video, Matt is dancing in Philadelphia, and if you look very quickly, you'll see a little girl in a striped dress on the left, directly in front of a guy in a grey-beige shirt, dancing up a storm.  That's my Nugget.  I don't know how Hercules (in the grey-beige shirt) knew Matt would be there, but, well, there they are.



---------------------------------------------------------

This is Tom Scott.  He mostly does science-oriented videos from fascinating places around the world, and I'm subscribed to his channel on YouTube.  He posted this one after the election.  And his fears are justified.  All over the internet, a certain group of people have become nastier.  Much much nastier.  It's like they think they have been given PERMISSION to be ... well, nasty.   And the one person who could tell them to knock it off, is ignoring the problem.  I despair.




---------------------------------------------------------

Several of the nurses have, after seeing the "age 72" on my records, remarked on my facial skin.  The left side of my face was torn up in a bicycle accident in my teens, and with age the scars are showing up now, finally, as a network of fine lines and pits.  The right side of my face is smooth.  I have the usual sagging along the jawline, but the nurses remark that "You have no wrinkles!"  

They'll ask if I moisturize, and I say no.  I'd hate to tell them why I think I have few wrinkles.

This is terrible to admit.  I rarely wash my face.  I don't wear makeup like foundation or blush, so it's not like I have to wash that off at night.  In a bath or shower I often forget my face - it gets washed as a side effect of washing my hair.  So, I guess, rather than moisturizing, I just don't wash the oil out.

I also won't exfoliate.  Jay had a theory that it was very bad to exfoliate, because your skin all over your body is naturally protected by a thin layer of dead skin cells, and if you remove that layer, the top layer of live cells die to reform the protective layer, and then the skin has to regenerate new cells to maintain skin thickness.  Cells generate by division, and any cell can split only so many times (look up "telomeres") and when it reaches that limit, the cell dies.  Exfoliation causes early cell death, so your facial skin will thin and age faster.  

Chemotherapy has affected my skin.  It seems to be thinner and saggier all over my body, probably because chemo will prevent regeneration (a good thing, I guess, as far as tumors go).  I've obviously lost some fat under my skin, even though I've lost only 2 or 3 pounds over the past seven months.  I'm hoping it will all go back to normal after this is over.

--------------------------------------------------

Well, I hope to be better about posting.  I will try, anyway.  
.

Thursday, January 12, 2017

5091 Oops!

Thursday, January 12, 2017

I didn't realize I hadn't been here since October.  Time passes when you're having chemo.

Ok, I'll be back pretty soon with updates.  In the meantime, enjoy this, Taking Fake Books on the Subway:


[https://www.youtube.com/watch?v=uywdkkEnTNc]
.

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.

Thud.

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.