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….

Last of the BIIIGGG Chemo Treatments

Bye, Bye Carboplatin!

[Carboplatin, or cis-Diammine(1,1-cyclobutanedicarboxylato)platinum(II) (trade names Paraplatin and Paraplatin-AQ) is a chemotherapy drug used against some forms of cancer (mainly ovarian carcinoma, lung, head and neck cancers).^[1] It was introduced in the late 1980s and has since gained popularity in clinical treatment due to its vastly reduced side-effects compared to its parent compound cisplatin. Cisplatin and carboplatin, as well as oxaliplatin, interact with DNA, akin to the mechanism of alkylating agents.--Wikipedia]

So, I delayed taking my sixth and final major chemo treatment until yesterday so I could be awake during my poetry reading at Gallery Nord in the affluent little suburb of Castle Hills—a suburb totally surrounded by San Antonio.  I had seen Doc Onc1 on Tuesday, my regularly scheduled meeting, once-a-month visit with my chief Onc Doc, and found out the things were still going well, cancer markers down below 25, and that my Thursday chemo treatment would be the last to use three different chemical brews.  After yesterday, I’ll be dropping the carboplatin and taking only the Alimpta and Avastin.  The after-effects should be much more easily handled.

It’s been a four-doctor kind of a week:  My primary care physician, a jewel among doctors, who is also working on my Type II diabetes and controlling it nicely; Doc Onc1; my ENT doctor who checks on my throat to help improve my voice; and my urologist who does unmentionable things.  Aside from that, two blood labs where the vampires dine heartily on my veins.

So, yesterday, feeling somewhat grumpy, I walked into the “treatment center”(read: chemo therapy drip room) with the dozen or so other cancer patients and got hooked up to an IV while three different chemo mixes and three flushes plus a B-12 shot found their way into my veins.  The whole chemo treatment takes a total of approximately four hours with nurses racing from patient to patient when their IV machines began beeping loudly.  I am usually the first patient in and the last patient out in the mornings.  each of us seems to be doing something different or suffering from something different:  testicular cancer, breast cancer, kidney cancer, brain cancer and so on.  I don’t think I could work in such a place and retain my sanity.  I have tremendous respect for those who can.

I finally cracked and asked the nurse who watches over my IV and sticks the needle in me each time (not having abused my veins in what I delicately call my wilder days, I do not need a mediport) what my real prognosis was.  She looked at my right foot and said, “Nope, no expiration date has been tattooed on.”  Meaning, she said, that as long as I did the maintenance and kept having regular check-ups with Doc Onc1, I should be okay.  That’s fine.  That’s something I can live with.  This morning, I went in for my Neulasta shot, an injection that restores some of the red blood cells killed by chemo.  I had blood labs done at Stone Oak Methodist Hospital.  I visited my PCP.  I saw my cardiologist.  I came to work.  

This little poem is for my cardiologist's EKG/Sonogram techie:

Dopplering the Heart

So, I’m almost watching this monitor, see—

no, its not an EKG—this nurse

with too long fingernails, some kind

of clear jewel in the middle of each—

well, she leans over and rubs cool gunky

stuff all over my chest and neck.  She had

soft hands, a delicate, well-trained touch,

but I hardly notice cause I’m looking

at her fingers and not feeling much

of anything until her blouse falls open

slightly and black lace starts showing,

my eyes shift a few degrees north

she jabs me with something, not a needle,

some hard device she rubs all over my chest

and neck and says look up at the screen

and I see my heart doesn’t look like much

it’s swelling, retracting, tiny little lines

open and close on the monitor but that

gets boring.  After a few minutes she shifts

slightly well, I’m tempted to look back

at the heart display just to see if anything

significant in that area had also sped up

but I’m kind of ticked about all these tests

anyway, missed teaching yet another class

and nothing’s shown up after these exams,

so I just enjoy the show—not the one

on the little  tv screen but the other display

 this tech puts on  intentionally I suspect

                         

she puts the stuff away, wipes my chest

and neck with coarse tissue “ just to get you

cleaned up,” she says and then she looks

down at me. “You have a good heart”

she says and I laugh.  She winks,

turns around,  looks back and waves.

She purses her lips, says "have a good day”

and  leaves the room.

Back to treatment:  the carboplatin, Nurse Maggie explained, was the chemical brew that caused most of the exhaustion for days, sometimes more than a week, after treatment.  It's better than cisplatin because it does not cause vomiting or nausea.  When I stop taking that, the Alimpta and Avastin will still cause some problems but not as many.  So, I'm facing a not great weekend, but a much better tomorrow.  As Scarlet O’Hara said, “Tomorrow is another day!”

I’ll go in once a month for a half year to have the other chemo brews dripped into my veins, will continue to get B-12 shots and Neulasta, but will not be as exhausted as I have been.  I get to keep my handicapped parking sticker.

More as more occurs.

I think I skipped #22 but I'll call this one #25 anyway!!! More Chemo!!!!!

Yet Another Round of Chemo:  I Win a Few More Rounds

After getting in from New York last night, I slept fairly restlessly.  You may recall that before we left San Antonio, I had an MRI of the brain and a CTscan of the lungs and abdomen and liver.  Why the abdomen and liver?  Just to be safe.  Those scans were in the back of my mind each day and night I was in the City.

So, today, I was scheduled for additional chemotherapy (alimpa, carboplatin and avastin™ —the new drug fabricated by Genentech) and a chat with Doc Onc1 about the two scans.  I was, I confess, a bit nervous.  I got to the Start Center for Cancer at 8:30 because they always draw blood, check my urine (not for drugs), weigh me and take my vitals.  They have the results before I’m ready to see the doctor at 10 a.m.  After seeing the doctor, I have my chemococktails and read a book while it drip drip drips into my arms and those drips go off to fight both the good and the bad cells affiliated with blood delivery to cells.  This is a huge, on-going war waged entirely in my body and all over my body [See Bob Steck's Message (not available most places) on Cancer as a War We Fight Within Our Bodies].  The chemo is non-directional and will fight heavy users of blood (e.g. cancerous cells and good cells, too, not vampires) wherever they may be in your body whether the MRI or CTscan can see them or not.  The avastin ™ is more targeted and can actually get into the brain to fight cancer cells there.  Until avastin™, that was not really possible.  I (wish I had Genentech stock—I might have in my TIAA stock fund.

I piss off yet another very nice nurse

Anyway, at 10:20, Anita, Doc Onc1’s nurse comes in and tells me he’s running twenty minutes late because of an oncological emergency at the hospital.  I ask her if she means he’s running forty minutes late and she says no, he said twenty.  I ask, Where is he?  Hiding behind you?"  She says at the hospital.  I ask “Who’s on first?”  She doesn’t understand.  I explain, not the allusion to the old baseball joke, but that since my appointment was at 10 and it is now 10: 20 and he’s 20 minutes late, he should be standing in the door right now.  She sighs and says she means twenty minutes from now.  And I say, oh...he’s forty minutes late.  She leaves.

Doc Onc1 Arrives

Finally, he does make it into the office—at 11:00 a.m.  He cranks up his computer to view the med records from the radiology clinic.  And says, “If you don’t mind, we’ll run two more full chemo treatments.  Then, we’ll start maintenance.”  I ask “What’s wrong? I thought we were starting maintenance after today’s chemo.”  And therein lies a tale.

The tale:  Each time Doc Onc1 or Doc Onc2 (I have not seen the second of the Docs Onc since I had cybersurgery) wants to do something, I disappear for a while.  Prior to the cyberknife sugery and the first chemotherapy treatment, I lose myself and Susan in Europe for a few weeks.  When I return, ZAP!!!!,  I get both evil procedures. But I loved Europe and both procedures were extremely effective.  This time, Doc Onc1 had thought he’d move to maintenance after the chemo I had this morning.  I was supposed to have had it last Tuesday, instead, ZAP!!!, I go to the City and see Broadway plays, the superb Willem deKooning exhibit at MoMA and relive my youth by hanging out at Occupy Wall Street for a while.  So, today, I am told that Doc Onc1 wants to delay shifting to maintenance until after two more full chemo treatments.

I gulp (I hate chemo!!!! And its after-effects) and ask why?  Has the prognosis changed?  He explains that yes, the prognosis has changed a bit.  Seems I have been doing so well on chemo (markers moving from 200+ to 75- to today’s 27) and my lungs sound clear and the cancer there is retreating and that’s also happening in the brain and lymph node and I am tolerating the intolerable so well that he wants to try to reduce all of the cancers until they are almost not detectable at all (I'm out of breath!).  At that point, we might try cyberknifing what’s in the lung or just cutting out what’s left.  At any rate, even if that does not happen, we can move on to maintenance.

Good News Day!!!

So, a good news day again.  Though a nervous day in the making.  I went to work for an hour after today’s chemo (which lasted three hours) and then out to Robert Flynn’s house for his signing of his new "Jade" book.  Had a good time.

Thanks for reading.

I Grow Old (#24)

I do grow old…and the mermaids are singing each to each and not to me.  I did have a peach today:  delicious.

Yesterday, Monday, October 17, I was scheduled for both a CTscan (lungs) and MRI (brain).  I suspect the MRI found nothing but oatmeal.  I woke up this morning, prepared to visit huge machines that I would be slid into on narrow beds, and noticed, when I opened the daily paper that it was already October 18. 

I would like to say I “hopped” into the MX-5 (sounds so much better than Miata, doesn’t it?) and raced to the South Texas Radiology Clinic [STRIC], but honesty compels me to say I slid into the driver’s side seat and, in spite of cool weather this morning, flung the top back. Prepared for almost anything, I went first to Jim’s on Blanco and Loop 1604 for a hearty breakfast of eggs and whatever came with them.  I spotted #50, David Robinson, the Admiral, a couple of tables over and managed to resist pointing at him and going ga-ga-ga-ga.  I’m sure he would have been appreciative had he known. 

The news is that we may not have a basketball season until after Christmas.  I think the owners are shooting themselves in the feet.  This is not like the auto industry where unions take pay cuts because the industry is in trouble; this is a case where the owners have gotten more and more greedy and want to change the CBA downwards.

Afterwards, I drove over to the START Center and confessed to my time reversals and basic guilt.  They rescheduled me at STRIC and I drove a mile down to Hardy Oak to get zapped once more.  The CTscans don’t bother me and the MRI is a bit better since they opened it up a little.  But you still get those machine gun sounds.  Years ago, when I had my first MI, I discovered that I have claustrophobia and was shaky for almost a full week afterwards.

I woke up, also, to the news that the UT Health Science Center at San Antonio’s Medical School had been placed on probation by its accrediting agency for improper supervision of faculty and students.  That has nothing to do with me nut thought some people might want to know.

I’m going away for a week and then will come back to San Antonio to find out whether the cancer has continued retreating or has stormed back.  I suspect things have improved.  I’ll let you know.