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CANCER: An Uncensored Journey

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Bill Sable
Post Posted: Tue Dec 08, 2009 10:01 pm

Joined: 14 Feb 2009
Posts: 259
A snapshot of the financial aspect of major medical.....


Total (Straight) Billing, to-Date: $ 520,791.
Total, @ PPO rates: $ 281, 525. (54.%)

ER and ER-related costs: $ 29,983. (6%)

Surgery: $ 170,366. (33%)

Radiation: $ 280, 350. (54%)

Oncology/Chemo: $ 40, 152. (8%)


Nuclear medicine is evidently an expensive proposition; it will be interesting to see the billing for the CT and PET scans.
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Bill Sable
Post Posted: Fri Dec 11, 2009 5:48 pm

Joined: 14 Feb 2009
Posts: 259
So, as long promised (or threatened), the first installment of..."The Care and Feeding of Your Ileostomy"

If you have an aversion to reality, skip this post.

If, however, you have not yet gotten a colonoscopy or think that you might get one but just haven't scheduled it yet (life gets busy, I know), then you need to read this.

So, if life has kept you busy and you have put off getting a 'scope and all of a sudden you find yourself in front of a surgeon who informs you that you have Stage III rectal cancer and that, yes, it is serious and your survival is not assured, and, further, that following chemo and radiation treatment you will require an 8 - 10-hour surgery to remove the afflicted area and that treatment will involve.......a temporary ileostomy.

You do all of the above and, aftwer you wake up from the surgery one of the things you are given is a nice cartoon-like booklet called "Living With Your Ileostomy" or somesuch. The book is fine - a wonderful start on things - but it does not tell you the full story.

This post does.

Some backround. You eat. Food goes into the stomach, passes through it into the small intestine which absorbs the nutrients; the "ileum" is the last section of the small intestine - food passes along into the colon, then into the rectum, and, finally, from your anus into your toilet bowl.

1. While in the "ileum" ..."stool tends to be quite liquid. That's because there is no colon to absorb water from the stool. The stool also contains digestive juices, so it is very irritating to the skin."
Now hear this: "very irritating" means that you will want to scream, to hit something, to consider stuffing your ostomy bag with ice cubes, or anything to make the pain go away.
The sensation is identical to pouring heavily salted lava on an open wound. It is not mildly annoying, it hurts like a sonuvbitch and it does not stop. I shit thee not.

The problem here is that, although you may inform your surgeon and ostomy nurse or the nature and type of work you do, they do not understand or realize the full measure of what grocery work entails. Especially on the night shift. Lifting, twisting, bending, pulling, pushing, etc. usually with weight in hands/arms and with physical stress on all parts of the body.
What this type of work does is: break down the paste caulking and other "skin barrier" parts of an
The problem is that with too much "skin barrier" sorts of things, the ostomy bag will not stick on your skin very well if at all. Then you have another major problem, to say the least.

2. You will realize (and pretty damn quickly) that you need "emergency kits" with spare ostomy bags, clamps, paste, kleenex and underwear in your locker at work and whereever else you spend much time (in the truck, for example).
Ostomy bags leak. Not always, not every day, but they do leak - especially at work. The paste/caulking wears down, the adhesion of the bag gives way and, all of a sudden, you have the experience and sensation of a bag emptying itself down your leg.
This means: (1) you need a new bag with new adhesion, (2) you need new paste, and (3) you need to clean and dry the affected area completely before the new bag will properly adhere. You may also need some fresh skivvies and some way of cleaning up your "Big Ben's".
Doing this at home is one thing - doing it at work or in a public restroom is a much more interesting experience. So, you will have "emergency supplies" at hand and a plan for their utilization.

More soon. Rolling Eyes
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SharynS
Post Posted: Fri Dec 11, 2009 6:56 pm

Joined: 28 Jan 2006
Posts: 2883
Location: the 'puter 		...and it can all be yours for a mere half a million or so. To qualify simply ignore the warnings.

So sorry you have to go through that WJ. I won't quote you the alternative nonsense I'm sure you've heard it plenty. May the Ileostomy gawds be with you.

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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 12, 2009 4:53 pm

Joined: 14 Feb 2009
Posts: 259
Why, thank you, Sharyn...actually all of the gods have been with me through this whole fandango...and I thank them for their attention.Back to live action..."The Care and Feeding of Your Ileostomy" [if you are so foolish as to refrain from a colonoscopy]I must preface the above and below by saying that I can speak only for the experience of a Hollister One-piece Drainable Ileostomy Pouch/Bag" There are two-piece doohickeys - haven't been there. There are other companies that make ostomy bags and paraphenalia - haven't been there either.3. Where I have been are a number of medical supply shops. The company specifically cited by the NorCal H&W Benefit rep as being a "Preferred Provider" (APRIA) does not deal with ostomy equipment. One must find a non-PPO medical supplier. With regrets, it is my experience that most medical supply houses either have no idea what you are inquiring about or simply do not carry ostomy supplies. When they do, the markup is ferocious. Walgreen's does not stock ostomy supplies although you can get them through their online operation (I think - haven't tried).Where you can get such supplies in the city of SF with all of its fine hospitals, medical supply houses, and corporate pharmacies, is at a family-run single-shop pharmacy on Noriega St. ACE Pharmacy - unrelated to the ACE hardware store immediately across the street. Not only do they carry all the supplies on hand (or can order and receive within a day or so), they deliver if needed, and their prices are at least 25-30% less than at the medical supply places.I must mention that these supplies are not inexpensive; a box of five (5) bags goes for between $60. and $85. (depending on where you purchase them). Five bags might last a couple of weeks, at best. Then there's the paste and other stuff.The paste is mentioned as an optional thing...BULLSHIT !!...you will need it, especially if you work night crew. Stings interestingly when you put it on (alchohol in the paste on damaged skin) but it works, at least for awhile until the activities of stocking break it down.4. Getting the sucker on. Now the booklet shows how to do it: (a) with the assistance of a nurse, and (b) on folks who have absolutely flat abdomens with washboard abs.In the real world, (a) there ain't no nurses who are going to be there to help after the first couple of times - and the bag really requires the use of at least 3 hands (preferably 4) to get on correctly every time, primarily due to (b) the wholesale absence of flat/washboard abdomens in the real world.So, you are going to have 2 hands when you really need 3 or 4 and are going to apply this one-time/one-shot adhesive surface bag to an area that, for most of us, is decidely not flat.You will screw up - I have been doing this since June and I am still screwing up.
You will know you have screwed up when the brand-new Hollister One-piece Drainable Pouch (with paste) starts a prodigious leak anywhere from 10-seconds to an hour after you put it on. It is easy, very easy, to start running out of bags and tubes of paste - when it happens at work, in the middle of the night, it is also a very special experience.

You can avoid this experience (and expense) by getting a preventative colonoscopy.
More soon, folks...
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Bill Sable
Post Posted: Sat Dec 12, 2009 4:56 pm

Joined: 14 Feb 2009
Posts: 259
My apologies for the format of the above post. Didn't come out the way I intended or typed it.

Sort of a Hollister Pouch kinda thing. Embarassed
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Bill Sable
Post Posted: Mon Dec 14, 2009 2:49 am

Joined: 14 Feb 2009
Posts: 259
The laws of nature inevitably kick in...having posted all of the above, I "blew out" my ostomy bag last night at the store, i.e. leakage off the port side. Not the night for this particular game, as we were well and truly buried.
The good news is that is happened while I was at lunch...the "hoodoo" law of the universe...there just ain't no escaping. Without going into details, basically the response is to get the "emergency kit" out of the locker, strip down in the toilet cublicle, wash up at best possible, paste the replacement, stick it on, tape it up if it doesn't go on perfectly (the cloth-backed nurses tape works pretty well), say a prayer while changing skivvies and getting work clothes back on.

Parenthetically, the replacement bag lasted until mid-morning when I woke up to a second tidal wave.


5. So here's the thing about that. The booklet specifies that you empty/flush the bag when it is about 1/3rd full (it holds, perhaps, a couple of pints or less at best). No question about that - you want to be proactive about it.

The problem is, and this is not mentioned in the booklet, is what you do while asleep. There are two options: (a) you sleep really well, let's say for 3 hours or more; result - you wake up to a football-sized bag on your side, or a tidal wave of nasty liquid/semi-solids all over your sweats; (b) you learn - quickly - to wake up every hour or two to check on the status of the bag - you endure the sleep deprivation and its effects.

Keep in mind that there is no muscular control over the stoma - it has a mind of its own and, basically, acts in unpredictable and irresponsible fashion.
Trust me when I say that you will develop a whole new respect for the human rectum and toilet training.

6. So you "empty the pouch"...and you will (and should) multiple times each day.
A couple of things: (a) do not, repeat NOT, lose your grasp on the tail (the open end) of the pouch. It will immediately do evil things that would make Linda Blair blush. that benign-looking bag will turn into a damn fire hose in that very moment; (b) do not drop the clamp into the toilet - you really need this simple piece of plastic so treat it with reverence.

7. Your stoma (if you are so foolish as to failure in getting the 'scope) will shrink over time.
So, what do you do with the now too-large bags. You cannot return them even in an untouched box, understandably. Personally, I keep some for use in a true emergency, i.e. when you have blown through 4 bags and the pharmacy is not open until Monday morning. But, as well, they can be decorated and given as truly unique Xmas ornaments, earrings, stuffed and decorated into sort of a "Matryuska" doll, and other creative possiblities.
Twisted Evil Note to the evil: they do not work well as water balloons. Sorry.
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SharynS
Post Posted: Mon Dec 14, 2009 3:56 am

Joined: 28 Jan 2006
Posts: 2883
Location: the 'puter 		It would be more expensive, however I'm you're worth it, but have you tried doubling up?

It could be my imagination and unique to Canada's socialized health care but I do remember a time when they sent people home with a shitload (npi) of whatever medical necessities. When supplies were a dime a dozen and came with the procedure.

The point being, if you aren't rich then who the hell can afford that kind of medical overhead?

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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: Tue Dec 15, 2009 9:46 pm

Joined: 14 Feb 2009
Posts: 259
Actually, i thought about a sipon and a gas can...but decided it might be just a little unwieldly.

The supplies are covered @ 80.% reimbursement by the NorCal Benefit Trust, once i get a copy of the form promised a couple of months ago. Rolling Eyes

Meanwhile, back at the ranch...

8. Before I forget - and this is vital - know that you will have to avoid contact with moisterizers/skin care/oils/etc., even secondary contact. These will, basically, cause the adhesive properties of the bag to disappear. The problem is that chemo causes your skin to dry out considerably. What the one requires, the other prohibits. Go figure.

9. "Clean the Pouch" [from the booklet]...Grand idea but you will not be using flat/folded pieces of TP to accomplish this; rather, you will find it needed to roll up lengths of TP into tampon-looking thingies and inserting those into the bag. [note: thought about actually buying a box of tampons until I checked the price].
The booklet continues about rinsing the pouch. Now, this is a liitle difficult to do (a) in a public restroom, and (b) while in the recommended position on the toilet. I have found it better to do this at home, exclusively. The other problem not adressed by the booklet is the conveyance of said water into the pouch. My solution has been a rinsed-out 12 or 15-oz. plastic Coke bottle (Pepsi would be just fine, as well); it fits the bag opening just about perfectly and, in general, works out just fine.

10. "Releasing the gas" [from the booklet]...you betcha, preferably on an aisle full of customers who are in your way.

11. "Changing Your Pouch"...this we have already covered. To repeat: this is really a job for two (2) people, four hands, two sets of eye. That is not going to happen, folks, not regularly unless you have a 24/7 nurse.
The adhesive bottom of the pouch is especially susceptible to screwing up because ist is difficult to see what you are doing under the flap while simultaneously getting the stoma properly placed within the circular thingie.
Note: while prepping for a change, do not, repeat not, get any water (not even a drop) on the paper adhesive covering - this will cause it to stick to the bag adhesive and you will have problems getting it to adhere to your skin.

More soon, folks, but remember: there is a way to avoid all of this. You know what it is by now.
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Bill Sable
Post Posted: Fri Dec 18, 2009 4:00 am

Joined: 14 Feb 2009
Posts: 259
Update: Medical Status

It is a pleasure to let you all know that today's consultation with my oncologist focused on the results of the PET and CT scans I had done a couple of weeks ago.

The news is good, extraordinarily so. The two scans indicate no evidence of any metastases or any malignancy whatsoever in any other part of my (magnificent) body. No lymph involvement, no gallbladder, lung, pancreas, etc. Nada. Nowhere.

For the moment, everything is clear and normal. The Doc does not want to see me for three months (at which point he will do some blood-work and check out the CEA metric). He has also referred the data to the surgeon so that he and I can discuss and schedule "take-down" or reversal surgery in the upcoming months.

Truly, a large number of people are responsible for this most positive outcome: my Medical Committee (Shirl and Patricia, and the store's Medical committee and Nutrition Sub-committee), friends, family, associates, customers...hell, it begins to sound like the "Million man March" and I guess is has been, in a way. My thanks to all, to all of you who checked into this post, who got a 'scope and, hopefully, encouraged someone else to do the same. (n.b. this post/blog/whatever it is is not over with...plenty of miles left on this road.)

Lastly, to all of you who entertained doubts, the PET-scan proves, without equivocation, that I have a brain. Cool Went there, got the pictures. Fairly chunky little spinal column, too.
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SharynS
Post Posted: Fri Dec 18, 2009 12:04 pm

Joined: 28 Jan 2006
Posts: 2883
Location: the 'puter 		The one question on everyone's mind and something you haven't touched on throughout this leg of your journey is: did you fall in love with your doctor?

Way to put the Merry into Christmas 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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atuuschaaw
Post Posted: Fri Dec 18, 2009 1:03 pm

Joined: 29 Jan 2006
Posts: 780
Location: an ahwangan 		Bill, that has to be the best holiday news I've heard so far Bro! Big ol' thumbs up! I just had my 6 month labs as well...and I'm good to go for another 6 months! Wink

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"Speaking the truth in times of universal deceit is a revolutionary act." George Orwell
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Laboryes
Post Posted: Fri Dec 18, 2009 3:17 pm

Joined: 29 Jan 2006
Posts: 1959
atuuschaaw wrote:
Bill, that has to be the best holiday news I've heard so far Bro! Big ol' thumbs up!


I agree!!!

WJ, I know your much more use to the other finger(No pun intended) being sent your way but this double thumbs up is for you my brother....



Yes a merry xmas indeed!

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"When people refuse to obey, then democracy comes alive."
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Bill Sable
Post Posted: Fri Dec 18, 2009 4:28 pm

Joined: 14 Feb 2009
Posts: 259
Well, thanks to all of you for the best wishes...and great news from autuuschaaw. Way to go yourself!...I hope to follow in your 3-month and 6-month footsteps.

Sharyn, I cannot claim to have fallen in love with my Doc...he's 20 years older than me but he does have some truly great glasses.
However...I could cut you a list of other docs, nurses, and techs who would be well worthy of a lust-interest.. Cool Wink

LY...honest. I have never inquired into precisely which finger the surgeon uses in his exams but it seems like the largest one he has availible.
Thumbs are not an option.
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The Third Element
Post Posted: Fri Dec 18, 2009 7:14 pm

Joined: 22 Feb 2006
Posts: 363
Very Happy Happy Christmas indeed.

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No Beast so fierce knows but some small amount of pity, but I know none and so I am no beast.
~ Richard III
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Bill Sable
Post Posted: Sat Jan 09, 2010 3:41 pm

Joined: 14 Feb 2009
Posts: 259
MED UPDATE, 8 jAN. 2010

Had a hot date with my surgeon's index finger yesterday...apparently the afflicted area retains an impressive muscularity (which will be neccessary shortly).
In consequence, I have been scheduled for a radiological "Hypaque Enema") which,essentially, checks the pipes for pinhole leaks, etc. before hooking everything back up. That will be done next Wed. with a consult on the 22nd with myself and the Medical Committee (thanks again, Shirl and Patricia...love ya and great dim sum selection, Shirl..!!)
Following the consult, we should be able to schedule the reversal surgery, hopefully in February (as to get some hours to less senior, laid-off, reduced-hour Clerks on the crew). The surgery is less severe, according to the surgeon, with a 3-day hospital stay rather than the preior 5-day residence. Cool

It occurred to me that I am coming up quickly upon the 1-year anniversary of the bleeding episode that got me into the ER and with the cancer diagnosis.
Perhaps a "Fete De Cul" is in order.??
It would be a way of saying "Thanks..!!" to all of you who have made this year better, much better, than it could have been.

More soon...
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