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CANCER: An Uncensored Journey

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Bill Sable
Post Posted: Wed Aug 05, 2009 5:17 pm

Joined: 14 Feb 2009
Posts: 272
Now the fun really begins...brawls with the medical bureaucracy.

The patient-care part of our medical system is filled with extraordinary, dedicated people - doctors, nurses, hell, everyone - whose purpose is health, mine and yours. No question. No problem.

The other side of the medical system is the bureaucracy, the bean-counters/paper-pushers who have no contact with a patient, with an issue of health or well-being, of pain or need. It is this side of the system that, apparently, needs some change.

I know this because, yesterday, I was on the verge of becoming another victim of the bureacracy.
This is what happened.

My oncologist has mandated two forms of chemo, a 2-hour IV one time every three weeks and a course of pills to be taken twice each day for 2 weeks. These chems are aimed at killing off any remaining cancer cells in my body; they are serious meds, not aspirin.

Last week, when I took the first IV, the doctor arranged for delivery of the pills to my home. Nothing showed up by Saturday; nothing and no word by end of business Monday. So I emailed the doc.

1. The chemo-pill pharmaceutical operation [ACS] contacted the NorCal UFCW/Employers Benefit Trust Fund. It was informed that I was not eligible for benefits in August 2009 - in consequence, ACS refused to undertake supply of the chemo-pills.

2. When I was informed of this by ACS, I telephoned the NorCal UFCW/Employers Benefit Trust and ultimately spoke wirth a very nice lady named Kelly.
Kelly informed me that I had only worked 92 hours in June (rather than the required 96, because surgery was scheduled for the 17 of June) but that Safeway/payroll in Arizona had not yet reported the FMLA hours to the UFCW Trust.
So I was, in fact, eligible on the basis of hours worked plus unreported FMLA benefit payments.
Kelly also called me back 10 minutes later to tell me that I was also eligible for August benefits because, in addition to the 92 hours worked, I has also filed for Sick Leave (signed by the surgeon) and for California State Disability.

So Safeway did not do its job in timely fashion in reporting FMLA payments to the NorCal UFCW Benefit Trust.
And the NorCal UFCW Benefit Trust, in essence, told me one thing (i.e. I have eligibility for August 2009) while informing the chemo-providers, ACS and the 2nd provider which did deliver this morning, that I do not have eligibility for August 2009.....
In short, the UFCW Trust tells me in no uncertain terms and in three ways that I have benefits while tell the providers of the anti-cancer drugs that I do not have benefits.
...What we have here is, as they say, a failure to communicate, effectively and accurately.

Mr. Jody Osterweil of the NorCal UFCW/Employers Benefit Trust can expect effective and accurate communication from me on this matter. It will be interesting to hear his response...and to post it.

Footnote: even the second provider of the Xeloda informed me via phone yesterday afternoon that the only reason they were able to process and deliver the order is because it was dated by the doctor 31 July and that they, too, had been informed by the UFCW Benefit Trust that I was not eligible for benefits and would not be eligible in 2-or-3 weeks for provision of the next supply/dosage.
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Bill Sable
Post Posted: Sat Aug 15, 2009 5:11 pm

Joined: 14 Feb 2009
Posts: 272
Hell, I think I'm going to throw my own "Town Hall" meeting about US healthcare...

Apart from correspondence to and from the UFCW Trust (about which more in the future - it's only fair to give time for a response), I received in the mail yesterday the Statement of Benefits from the Trust for the 5 days I spent in the hospital following surgery.

The total amount charged by CPMC was: $ 152,756.45 Exclamation

That is approximately $ 30,000.00 per day. Exclamation

What the Trust actually paid under the PPO contract was: $ 25,965.00; still, $ 5,000. per days seems like alot.

Point is: you go in without insurance coverage, you will be charged the full $ 152,756.45 and the hospital corporation will come after you for payment, no holds barred, no qualms.

Which is why so many folks in the US file for bankruptcy after a major medical situation - they have to.

Bottom line: the country needs major reform immediately. I would be pleased to go to a Town Hall which my stack of medical bills/statements and take on any dumb sonofabitch who thinks otherwise.
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Bill Sable
Post Posted: Tue Aug 18, 2009 8:04 pm

Joined: 14 Feb 2009
Posts: 272
In a tidy segue from the universal to the mundane,
I have some really good advice for you guys.

Really, I mean you guys, because (a) women are probably too intelligent to do this, or (b) most women have already done this once - only once.

So, gentlemen, my advice, based upon verifiable experimentation is:

Do not, repeat NOT, under any circumstances, run a Maxi-pad through the washer-dryer.

The volume of material that these companies compress into just one of those most useful pads is absolutely incredible.

Just so you know.... Razz
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SharynS
Post Posted: Wed Aug 19, 2009 2:17 am

Joined: 28 Jan 2006
Posts: 2939
Location: the 'puter 		Mr. Green damn good advice WJ.

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Free speech is the whole thing, the whole ball game. Free speech is life itself. - Salman Rushdie
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Bill Sable
Post Posted: Fri Sep 04, 2009 10:58 pm

Joined: 14 Feb 2009
Posts: 272
Greetings to all...and apologies for being a touch out of touch of late.

This double-barelled chemo treatment is taking a bit bigger chunk out of my butt than the first go-around...that and I have successfully completed my second week back to work without major (or minor) catastrophe.

Some discomfort but no bag-blowouts - no intestines popping out my ear - etc.

Actually got back to cooking for the crew at least a couple of days (while being cooked for by the ladies on the crew!!)

Been sleeping alot, though.
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SharynS
Post Posted: Sun Sep 06, 2009 3:51 am

Joined: 28 Jan 2006
Posts: 2939
Location: the 'puter 		WJ why (the heck) are you back at work mid-treatment/recovery? I know from personal experience, just knowing you are able to can restore some sense of invincibility but from the recovery perspective and based on countless studies - not to mention the numerous hazards of your line of work - you can't possibly make a case that it's somehow beneficial to your health.

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Free speech is the whole thing, the whole ball game. Free speech is life itself. - Salman Rushdie
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Bill Sable
Post Posted: Fri Sep 11, 2009 2:26 pm

Joined: 14 Feb 2009
Posts: 272
Morning, folks...and thank you, Sharyn, for the question and the concern accompanying it.

Why am I back to work?
Well, good question. Got the same question from all of my store medical committee (the Ladies, God/Buddha/etc. bless them all!!)

First of all, the doc OKed it - though the oncologist has no problem providing the necessary paperwork is the chemo gets too heavy...and I would have no problem taking more time off if that situation occured.
Weight is good - steady @ 210 lbs - appetite is good; just get a little more tired a little more easily, but things are actually going rather well at the store from the physical side of things.
Secondly, I cook better when I'm cooking for the crew. Got to say, I make some absolutely killer prawn alfredo with linguine Saturday night. Followed it up with a spicier sausage and prawn pasta in marinara on sunday night.

The son of one of my (retired) former co-workers was in the store the other AM (he's a cop. SFPD, works the night shift). His mom wanted to know how I was doing and why I didn't just retire.
My response was that with two assholes and a 5-gallon bag of shit on my leg I was ready for a second career in management.

I recollect a Jethro Tull song: "Too Old to Rock n Roll, Too Young to Die".
Guess I just don't feel too old - or too sick - not to work.
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Bill Sable
Post Posted: Thu Oct 15, 2009 3:32 pm

Joined: 14 Feb 2009
Posts: 272
Hi, folks...
My sincere apologies for not keeping this commentary up a little better. Of late the choice has been between online time or chemo-created fatigue/sleep.

Sleep wins, mostly...well, that and the workweek.

In the meantime, there is a soupcon of news.

First, I've received the second report on blood analysis...all looks very normal (as it did in July/August); CEA is 1.9 and well within the normal range.

Second, there has been a minor schedule change. December will be devoted to an additional go-round with the chemo program, to be followed by a complete study" including CT and PET scans, and, then the reversal surgery, probably in Jan. if all is well.

Third, I have passed the HALF-MILLION-DOLLAR mark in medical charges...straight-time billing, that is; the PPO billing is around a quarter-million dollars.

The question is, obviously: how could any working person in the US, even someone making a six-figure income, afford this level of economic pressure?
The plain fact is, they (and we) cannot. Hence, the number of people in this country who die each year bereft of medical attention/healthcare coverage and the number of individuals/families who are compelled to file for bankruptcy protection.

The status quo is impossible and inhuman.

The solution: agitate, agitate, agitate.
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SharynS
Post Posted: Fri Oct 16, 2009 12:32 am

Joined: 28 Jan 2006
Posts: 2939
Location: the 'puter
Quote:
December will be devoted to an additional go-round with the chemo program,...
Why if the counts are normal - additional insurance? Were they on the list of possibles going in? Beautiful evil stuff that chemo is.

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Free speech is the whole thing, the whole ball game. Free speech is life itself. - Salman Rushdie
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Bill Sable
Post Posted: Fri Oct 16, 2009 2:50 am

Joined: 14 Feb 2009
Posts: 272
Damn, online twice in one day...I must be feeling better. Razz

Sharyn, I emailed the oncologist with exactly that question but I presume that "insurance" is the reason...and who wants surgery just before Christmas anyway. Rolling Eyes

And, speaking of insurance...as of today, the total "straight billing" is:

$ 603,043.

PPO coverage has resulted in payments from the UFCW NorCal Fund of: $ 350,021. (approx. 58% of "straight billing"). This is of some significance given that we have a $ 2 million lifetime cap on expenditures. All of a sudden, in the current economic climate in the healthcare industry, that ceiling doesn't look very high at all.

The breakdown is as follows:

* ER/2-day hospitalization
in Jan. 09/etc. $ 29,983. PPO $ 10,276.

* Surgery/5-day hospitalization
in June 09. $165,898. PPO $ 31,050.

* Radiation. $385,180. PPO $299,264.

* Chemotherapy $ 21,982 PPO $ 9,431.

...and counting. Crying or Very sad
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Bill Sable
Post Posted: Sat Oct 24, 2009 8:27 pm

Joined: 14 Feb 2009
Posts: 272
Well. now...just had my second-to-last IV chemo (Eloxitin) and wolfed down my three morning Xeloda tablets...and, all in all, I feel pretty decent.

The good news is that the Onc-Doc reversed himself and said that the November IV will be the last - you only get six (I guess he miscounted).

Blood still looks good; my store "Medical Mama" Committee" is still pumping out the good stuff. The ostomy bag is periodically uncomfortable and usually annoying but tolerable.

All in all, the sun is out, the winter clovers are starting, the menu for the crew tonight is set,one more member of my crew is going to get a colonoscopy this week and another has joined me in quitting the cigarette addiction...what's not to like. Question Question

best to you all...get the scope Exclamation Exclamation

BILL
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Bill Sable
Post Posted: Fri Nov 13, 2009 4:11 pm

Joined: 14 Feb 2009
Posts: 272
A bright and shining morning to you all, along with my apologies for not updating a little more often.

A do have some good news: one more member of my crew (after a little initial reluctance Embarassed ) scheduled and received a colonoscopy...the results were completely clear. Bravo.. Very Happy

As for my own self, I just received the 6th and final IV Eloxotin yesterday with the final shipment of 2 weeksx worth of Xeloda to arrive this AM. After than, the doc has scheduled a "Full Study" including PET and CT scans and possibly more intricate blood analysis prior to a consult with my medical committee and myself and possibly reversal surgery in Jan.

No major chemo effects ( Surprised Very Happy ) apart from some tiredness and more rack-time than usual. The last blood labs came back totally "normal" again in all aspects including cancer marker/CEA...this is a good thing.

In short, still alive, still kicking, and plan on staying that way. Wink

Hope you all are the same.
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Bill Sable
Post Posted: Sat Dec 05, 2009 4:21 am

Joined: 14 Feb 2009
Posts: 272
Well now....an awkward phrase, perhaps, considering. Rolling Eyes

Had my second encounter with high-tech medical stuff today: the CAT-scan (no felines involved) and the PET-scan (likewise, including canines). All of y'all who have watched HOUSE have probably seen these gizmos...sections of a tube into which you enter on a sliding table, the techs leave the room and whirling doo-hickeys scope out you innards, showing all sorts of wonderful (or not-so-wonderful) things.

In the case of the PET-scan you are injected with a glucose-based solution (after a fast involving no carbs or sugars). The theory/practice is that fast-growing, energetic cancer cells will use this glucose quickly and rapidly, as they do, the wee bastards) and this shows up on the scan, layer by layer, organ by organ, area by area. In a way, the same principle as night-vision goggles or heat-seeking missles.

The techs stick your finger for a blood glucose measurement (damn near took a sledgehammer to get through the night crew callouses), an IV stick (finding what are called "ropey" veins after 6 months of chemo = not an easy proposition), one small dose of Valium (not quite sure what that was for unless it helps people who have panic attacks in enclosed areas), some time for the IV to work its way into your system, and then the PET itself - about 45 or 50 minutes of scanning.
The only (minor) discomfort was/is keeping your arms stretch out behind your head for that length of time, annoying but no more than that.
Also, as mentioned, some folks do get panic attacks from being inside the tube. Frankly, and I a told the tech nurses, I do not have a problem with that, having spent at least part of my life inside the "restroom" of a relatively small sailing vessel and another part under water (while surfing, not on the boat). The PET is not even close to being buried by a 20-foot breaking wave...now that gets claustrophobic.

About two and ahalf hours of time, validated parking, all done...except that, as always it seems, when one is in a hurry, with an appointment to make, the ileostomy bag exhibits its evil side Twisted Evil and decides to leak - twice, the old bag and then the brand-new bag, requiring time, effort, and a third bag
(which ain't cheap, people, a box of 5 for about $65.00).

So, be advised: my next post will be about the "care and feeding" of an ileostomy...the real stuff, not that "I race triathlons with my ileostomy" stuff.

If you get queasy, pass on the next post.
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SharynS
Post Posted: Sat Dec 05, 2009 5:46 am

Joined: 28 Jan 2006
Posts: 2939
Location: the 'puter 		I can't wait to see the tab you rung up. Sounds positive all around WJ, way to go! Did your blood at least run cold prior to or during the invasion and/or waiting for the results?

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Free speech is the whole thing, the whole ball game. Free speech is life itself. - Salman Rushdie
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Bill Sable
Post Posted: Sat Dec 05, 2009 5:06 pm

Joined: 14 Feb 2009
Posts: 272
Morning, Sharyn Smile

...and thanks for asking. The medical tab is approaching the total of my bar tab at the Cliff House for the past 35 years or so.
I will have to tabulate and post an update on that subject.

In answer to your second question....no, no "blood running cold" reaction. My attitude has pretty much been "c'est comme ca" or "it is what it is" with a shrug. One way or the other, I'll deal with it and with the results (which I do not have, incidentally...I'll have a sit-down with the oncologist pretty soon pending completion of the "full study" including blook workups, etc.)

Plus, I was so pissed off re the ostomy bag leakages prior to leaving for the appointment that my blood was probably boiling. More on that later. Rolling Eyes

Last: I noticed that there have been well over 10,000 views/hits/whatevers on this thread over the months (and, it approaches nearly a year since the original symptoms/diagnosis...damn fast and busy year Exclamation Exclamation )
I'd like to thank everyone who has checked in and checked it out...with the hope that each of you has spread the word about getting scoped.

In case I did not mention it previously, one of my (initially reluctant) night crew brothers got scoped a couple of weeks ago; results: perfect - he pitched a no-hit shutout. Bravo!!
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