Flu, Cedar...maintenance and bright weather

So, maintenance chemo again yesterday afternoon, followed by a B-12 intramuscular injection and then a Neulasta shot this morning.  The injections are to stave off some of the damage done by the chemo.  The numbers:  I have now had nine (9) IV drips of Avastin.  Each injection costs right at $12,564.80 for a total (thus far) of $113,083.20.  The Alimpta costs $1.80 less per drip; so, the cost if approximately the same.  I’m fortunate in that I have decent health insurance from my university.  I wonder, though, about those not old enough for Medicare and who cannot afford health insurance and do not have an employer that provides health benefits.  This is part of why we need the Affordable Health Care Act or, as its detractors call it, Obamacare…and sometimes even RomneyCare.

I am also aware that the costs provided by my health insurance company are not realistic.  Those are the costs provided by Genentech and other drug manufacturers.  The cost paid by health insurance providers have been negotiated downwards from the peak cost by a goodly percentage.  And that is why the Republican deal not to allow Medicare to negotiate with suppliers is so noxious and is so expensive to the government.  Okay, no more politics in this blog entry.

So, the previous time I went in for maintenance therapy (chemo therapy by another name), I developed a bad case of the flu.  Remember:  chemo reduces your natural immune system's ability to protect you.  It took two weeks to get rid of that with powerful antibiotics and, as soon as I did, the billions of cedar trees between here and Fredericksburg and north to just west of Fort Worth decided to get sexual and spread their pollen.  So, I continue to sneeze and cough though the flu is gone.  Neither here nor there.  Doc Onc1 tells me that my lung cancer is no longer visible on X-Rays and that the chemo has shrunk it remarkably on the CTscan displays.  That’s pretty remarkable since the diagnosis of Stage-4 lung cancer was a definite death sentence less than ten years ago.

I am typing this from work this morning and am rushing through it…do bear with me if some sneaky little grammatical problems creep into some of the sentences.  But, it’s a beautiful day and I ventured to work with the top down in spite of pollen dancing in the air and am, off and on, sneezing onto my keyboard.  I do hope you catch nothing from all that.

We have re-jiggered my maintenance schedule so that I can go to Beaumont for a reading at Lamar University (they’re actually going to pay those of us who are reading!) and then fly to Chicago on Leap Day for the annual conference of the Association of Writers and Writing Programs (AWP) where I’ll be hosting a party at the Gage Gallery (arranged by my former St. Mary’s Colleague, Scott Blackwood—a fine fiction writer).  By the time I return, the cedar trees should have ceased their winter frolicking and I should have stopped sneezing and coughing.

Two more doctors to see in the next three weeks:  my pulmonologist and my cardiologist.  Crap!  Add in my ophthalmologist.  More after those visits.

Ah, the effrontery of it all...allergies!!!!!!!!!!!!!!

Perhaps the only real downside of living in San Antonio, Texas, is the fact that we have a huge arc of millions, perhaps billions, of juniper cedar trees to our north and west.  Each year at about this time, the junipers get randy and start broadcasting their pollen.  We call them “mountain cedar,” but they’re really juniper ash trees and they are, as one web site calls them, the “plague of trees.”

“The Allergy, Asthma and Immunology Clinic of Georgetown, Texas has a web site describing the awful effects of cedar allergies http://hovanky.com/allergy/mountain.htm .  From December through February, many people experience an itchy, runny nose, sneezing, nasal blockage, excess tearing and itchy eyes. Others complain of itching of the palate, throat, or ears, and postnasal drainage. Some have fatigue, mild headache, facial discomfort, sore throat, partial loss of sense of smell, and sensation of ear plugging. If you experience the above symptoms every year during these months, the chance is great that you have Mountain Cedar allergy.”

Just after Christmas, local television weathercasters predicted that the next day we would receive 1,800 units of cedar pollen per whatever they use to measure the damned stuff.  Instead, we got 21,000 parts per….  That’s nice and academic.  Look at the list of symptoms up there and please note that I NOW HAVE ALL OF THEM PLUS MY VOIC IS GONE.  People assume I am coughing and acting close to death because I have cancer, but it’s the allergens in the air.

I have been back to Doc Onc1 since my last report:  low platelets, high white blood cells, the adenocarcinoma is in retreat still.  But I am getting extra liters of IV drips to replenish my dehydrated body.  I may wind up wearing one of those silly little masks everywhere until the end of February, perhaps my voice will come back.

In the midst of all this, I may have to go see an allergist.  I may wind up walking in a haze of strong antihistamines, shooting myself with whatever mix the allergist comes up with, along with my insulin shots.  I may be able to breathe again, to function again.  And I suppose it would have been worth  it after all.  I suppose.

And so it goes...maintenance is boring

I had the second of what will be many maintenance chemotherapy treatments yesterday and feel pretty good today.  I need to feel this good tomorrow when we have a sales rep from a major library furniture vendor coming to present a new line of furniture.  Usually, after-effects from chemo are felt the second and third days after treatment.  Maintenance therapy, though, is supposed to have a much less strenuous effect on the patient.

Good news yesterday was that all the blood work (including those naughty platelets) was normal.  So, I sat in the recliner re-reading Moby Dick and waited for the 2 and a half hours of IV to finish dripping in.  That’s much better than the old four-hour IV drip (though I would have made more headway on Melville).

Nurse Maggie, my IV nurse, is a wizard with needles and always manages to get the IV in with the first thrust.  Much different from the male nurse at my gastroenterolgist’s office who jammed the needle through the vein and quoted Rick Perry (“ooops!”).  That attempt oozed for three days before stopping.  Nurse Maggie is one of a platoon of fine nurses working in the treatment room (AKA Cancer Ward) and responds, in a nearly Pavlovian way, to the beep beeps when an IV bag empties itself into the vein and then rushes over to attach the next bag.  I get four bags a visit now:  two for chemo and two to flush the vein.  Before maintenance I had six bags full (Baa Baaa Baaaa).

And so, it continues.  I do have a cough, but the Docs Onc say the cough is not caused by the cancer and are referring me to a different Doc to see about that.  The ENT Doc couldn’t do anything but prescribe Benzonate (didn’t work) and, so, we’re trying a trip back to the pulmonologist this time.  Doc Rafael is the doc who first caught this thing, these things, whatever.  So, maybe he can do something about my waking up coughing at night.  We’ll see.

Anyway, it’s a beautifully brilliant day here in San Antonio and I am in my office instead of being out in the sun’s rays swinging long sticks at dimpled balls.  Three more weeks before the next chemo treatments and a bit more than a month before I head to Chicago for the national meeting of the Association of Writers and Writing Programs.  That last should be great fun.

I Have a Cold

I Have a Cold

(with a description of what exactly “maintenance therapy” is)

Okay, every day people are getting colds…no big deal.  But Saturday I slept from 4 p.m. to 11 a.m. Sunday (19 hours for a person who has always needed 6).  Then, went back to sleep from 3 p.m. Sunday until 10:30 a.m. (19 hours. 30 minutes) on Monday.  When I was much younger and pulled all-nighters at bars and libraries, I could do that.  These days, no.

Yesterday morning (that same Monday), I called Doc Onc1 (I’m supposed to do that if something odd happens).  Here’s the odd thing that was happening:  bad headaches, flatulence and belching (gross, I know), sore joints, sore lower stomach, sneezing, low-level fever. (Plus, my sister-in-law was visiting--that's a good thing, by the way)  The doc called back within five minutes and had set up an appointment for me to get a chest X-ray at STRIC, had set up an appointment with my superb PCP, and had set up an appointment with him.  My medical life was flashing before my eyes!  Everyone except my pulmonolgist, my nephrologist, my urologist, and my gastroenterologist).

The X-ray was negative.  Even trained X-ray technicians can no longer see the lung cancer, but the X-ray did pretty much rule out pneumonia.  Next, to the PCP's office:  a nose swab.  I hate those!  I sneeze for thirty minutes afterwards.  That ruled out the flu!  Everyone is listening to my lungs...clear.

An hour later, I dragged myself into the START Center for Cancer Treatment.  No pneumonia, no cold.  Doc Onc1 said, “H. Palmer Hall, you have a cold.”  *sigh*  But they also did a Complete Blood Count (CBC) and my platelets were down to 77 after last Tuesday’s maintenance chemo.  Not so low as to be dangerous (I was at 21 two weeks earlier!), but low enough that they wanted to do something about it.  What?  An IV drip of Saline Solution to rehydrate me.  That took an hour and a half!

A couple of you have asked precisely what “maintenance therapy” is.  So:

About five years ago, oncologists got tired of watching their lung cancer patients die.  Two of my friends died of lung cancer that year:  Carla Saenz and Cynthia Harper.  Carla was the Community Relations Director for the largest Barnes & Noble in town and that store donated $1000 to Pecan Grove Press each year plus readings to all of my San Antonio authors.  Cynthia was a superb poet and dear friend.  As editor of Chili Verde Press, she published my first two chapbooks:  From the Periphery and Deep Thicket & Still Waters.  We had lunch every Wednesday at the Blue Star Brewery.  I continue to miss them both very much.

So, when I found out that I, too, had lung cancer, I became almost fatalistic.  Until I met the oncologists at the START Center.  For the past five years, oncologists have been debating something called “maintenance therapy.”  It works like this:  They give you large amounts of chemotherapy (in my case carboplatin, limta, and avastin) for six visits (one each month in my case) and then they check you out with MRIs, PetScans, blood workups.  If there has been sufficient shrinkage of the tumors, they give you two additional rounds of major chemo.   This brings you close to death, but should kill off most of the remaining bad cells. And then, they move you to maintenance.  An additional series of scans prior to maintenance showed that the brain cancer was gone, nothing left but scar tissue (oh, yes, plus the original gray mass that passed for a brain).

Maintenance, in my case, includes similar treatment to pre-maintenance, but the carboplatin is left out.  The IV drip last for 2.5 hours and not 4.  The after-effects are supposed to be neglible, but “H. Palmer Hall has a cold!”

Maintenance remains a fairly new therapy for oncologists and is still debated.  Some maintenance patients have been on maintenance for all five of the years doctors have been doing it.  There is no guarantee, but I feel pretty good abut it. 

There are two possible goals, neither with guarantees:  1) remission and 2) new therapies coming along.

So, there it is.  I have a cold.  But with chemo reducing my immune responses, colds are a bit harder on the body than they used to be.

Post Number 30 (I think): first maintenance chemo

One ought, every day at least, to hear a little song, read a good poem, see a fine picture, and if it were possible, to speak a few reasonable words. --Johann Wolfgang von Goethe (1749-1832)

I was back for the first round of maintenance chemotherapy yesterday.  Before starting, they did another CBC (complete blood count) to ensure that my platelet count had improved.  It had:  from 24,000/deciliter to 31 to 54 and now, all the way up to 109,000.  The ideal is 120,000 – 150,00 (file this under trivial info you just don’t need to have!).   At 109, I was okay for the IV to be stuck in my arm.  Quick note:  at last week’s endoscopy to ensure that I had not developed an ulcer, the PA jabbed my vein so hard that the wound “leaked” for three days afterwards.  So, they switched arms this time.

Since they had to wait for the doctor’s approval after the new CBC to start, I sat there for an extra hour waiting for Doc Onc1 to return from an emergency at the hospital.  The maintenance chemo (minus the Carboplatin--Carboplatin is a slow drip) only took two hours as opposed to the normal four.  Afterwards, I received my B-12 shot and returned to work.

This morning, I was back for a Neulasta shot (not the sleeping drug with the cute little psychedelic butterfly).  I get one of those the day after each chemo treatment to charge up my white blood cells.

The maintenance chemo leads to less tiredness but continues to work against the pesky, reduced, lung cancer.  With luck it will reduce itself into total remission.  Or, I will continue on maintenance until some new breakthrough occurs.  Whatever:  I should still be around for some years to come.  That’s according to Doc Onc1 who has a few people on maintenance now for more than two years.

So, there’s a path set:  once a month for maintenance chemo and the day after for Neulasta.  As Nurse Maggie, who does all of my chemo treatments, says:  "there is no expiry date tattooed on your foot."  Good news, I think.  I mean the IV drip every month is not too bad.  I take my iPad and check email, read books or watch old movies downloaded from Netflix.  Could be worse.

And I keep reciting poems I once sang into the valley between Engineer Hill and Pleiku ("big town" in the Jarai Monragnard dialect).  "The Lake Isle of Innisfree" (I will arise and go now, and go to Innisfree") and the first lines of "The Love song of J. Alfred Prufrock" (Let us go then, you and I, when the evening is laid out against the sky / like a patient etherized upon a table....").  Poetry has always been a great consolation as philosophy was for Abelard and others.  I remain grateful to my high school teachers who had us memorize thousands of lines.

Problems with Platelets

We Never Know What the Little Buggers Are doing, Do We?

It’s been a bit cool in San Antonio lately but the medical profession soldiers on and takes those of us in their grasp with them.  Don’t get me wrong:  that’s a good thing.  I spent last Friday being poked and prodded and mechanically moved into the core of various machines.  Here’s the schedule:
 
   PettScan at South Texas Radiology (STRIC) on Sonterra Blvd.  8 a.m.
   Blood draw (CBC) at the START Center for Cancer (this was a result of my previous encounter with 

             Stone Oak Methodist after my low platelet incident.  9 a.m.  [CBC=complete blood count] 
         MRI at STRIC on Hardy Oak.  12 noon.

At least STRIC provides donut holes since so many of us have to fast prior to going into the bellies of their machines.

The Thursday before, I had an appointment with my PCP for my routine, annual physical.  Everything looked fine:  A1C (3-month blood sugar test), normal; cholesterol, normal; triglycerides normal.  I am, in terms of a general physical in extraordinarily good health.  But there is that tiny little problem of being a Stage 4 Cancer Patient.

I wait for the results of the blood draw on Friday.  My platelet count has gone all the way up from 24 to 27 (24,000/deciliter to 27,000/deciliter).  It should be at about 120,000/deciliter (120).  The carboplatin, which I no longer take has decimated my poor little platelets.  There is talk of transfusing me, but Doc Onc1 says wait until we draw blood again on Tuesday.  Tuesday’s blood draw shows that my platelet count has risen again—this time to 31.  I am on the mend again!

That afternoon, I have my meeting with the oncologist (AKA, Doc Onc1).  Some good news.  The cancer in the brain has gone; nothing left but some scar tissue.  And more good news:  the lung and lymph node cancers have shrunk markedly.  I am now ready for maintenance.  Maintenance means that I am now having only two chemotherapy drips every three weeks instead of three every four weeks.  The bad boy, though, was the carboplatin, which I will no longer take.  That means my bad days will be reduced dramatically, possibly to none.

But, and there’s always a “but,” isn’t there?  I could not start the new maintenance regimen yesterday because of that little jaunt to the hospital and the low platelet count.  Doc Onc1 wants to find out why there was blood in my stool (gross!) on Saturday morning.  It could be, he opines, an ulcer developing.  It could be something else.  We need to find out.  We know that it is not caused by cancer, but it could be caused by the cancer treatments.

To make an already too-long story as short as possible, tomorrow at noon I go fasting to see my gastroenterologist.  Not, thank God!, for a colonoscopy, but for an endoscopy to look at the upper GI tract.  My colonoscopy doctor is a good guy who buys all of my books (punishment for putting me through all those colonoscopies! (I have one every three years because my mom died of colon cancer at 85.)

So, I’ll be at the San Antonio Gastroenterology Center tomorrow and next week will begin maintenance therapies for the remaining cancers.  If you have read this far, I can tell you that Doc Onc1 thinks I’ll be on “maintenance” for at least a year and that my outlook remains incredibly positive.

An Unexpected Complication on an Otherwise Restful Day

A Lousy Afternoon in the ER

I had anticipated not writing another of these for a few weeks–that’s when I start maintenance chemo.  But that plan was waylaid by a little drive down to the emergency room [ER] at Stone Oak Methodist Hospital this afternoon.  Susan came along to keep- me company.  Take my iPad away when medical personnel came into the room, return it when they were gone for a while.  Oh, I forgot to say why I went in in the first place.

Okay, yesterday was a long day.  Susan was busy in the kitchen much of the morning preparing a lovely and nicely barbaric, oven-roasted turkey to welcome our son the computer programmer/developer home for the day.  Everything went well.  Aside from a fine late afternoon dinner, the Cowboys beat the Dolphins and UT squeaked past the Aggies.  Both games went up to the last five or six seconds.  I did, perhaps, have a little too much chocolate and apple pie.

So, this morning I woke up and went quickly, more quickly than I had planned, to the bathroom.  I feel rather like a 3-4 year old with potty humor mouth, but what appeared in the bowl was (dear me!  Excuse me, please.) black and greenish.  Something for Halloween and not for Thanksgiving.

So, I called Doc Onc1 and did not take the Imodium I had reached for because its label cautioned against taking it when you have…ahem…”black stool.”  That’s a direct quotation and I apologize again for the language…if any of you are squeamish.  Doc Onc1’s on-call partner, Doc Onc3, called back and told me to hie myself to the ER for various tests normally conducted by my urologist.  What a pleasant way to spend 3 – 4 hours:  an IV, blood tests, digital test (‘nuff said), and an X-Ray of lungs, stomach and full disgustive (<-- pun intended) tract.

The results?  Nada.  I did not have blood in the place suspected of having blood <--circumspection.

So, Susan and I went home with orders to call Doc Onc1 first thing Monday morning.  Were you aware that more soldiers died of diarrhea in the Civil War than of enemy action?  I had found that interesting until today.

What Doc Onc3 had suspected was that I had, in all the time of chemo treatments, developed an ulcer that was bleeding a bit (not the case).  I had suspected that the Avastin™ (possibly the culprit) had caused some kind of bleeding (the reason it is no longer approved for breast cancer while remaining the most effective chemotherapy for that cancer).  Neither case was true.  Instead, I had an inexplicable anomaly, something vaguely related to an allegory, I think.

The X-RAY Tech did compliment me on my clear lungs.  I stopped myself before complimenting her on hers.

Again, my apologies for this crappy little report, but in the interest of full disclosure….