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.