Sunday, December 23, 2007

This version of normal.

Tomorrow, I start 28 radiation and Xeloda treatments.
Today is my last 'normal' day for awhile. Or maybe not...maybe the effects of radiation and Xeloda will be minimal. No way of knowing until I just do it.

This is so different from the last time, when I went from diagnosis to port placement to chemo in a week, and barely had a minute to catch my breath in between. This feels measured, and finite...and hopefully it won't have drastic effects on my sctivities of daily life.

We shall see.

But for know, I know this as 'normal,' and I'm reluctant to fill up today with stuff, even though I've got a full to-do list. There are presents to wrap, gift cards to buy, laundry to do, trash to move outside, dogs I should probably groom rather than wait until next weekend. I don't want to do any of it. I want to just relax awhile, and enjoy the last few hours of this version of normal.

And let tomorrow's version of normal take over, tomorrow. ;)

Thursday, December 20, 2007

The little things that will twist your mind...

Twenty years I've been working for a pharmaceutical company, doing pre-clinical drug safety research.
Twenty years--a major part of that time building cancer drugs.

Tonight, I just spent 20 minutes on the phone with some telephone tech answering the phone at the company mail-order pharmacy, feeding her the information off my insurance cards and the lists of my doctors and their phone numbers--justifying, to this woman I've never met, why I deserve to have them waive their arbitrary rule that they alone must fill my Xeloda prescription.

I told them that I'm stage IV, that my treatment (radiation + Xeloda) begins on Monday, that there's no way that I'd be able to get any drugs which they tried to mail-order to me.

And they put me on hold.

And then, after my local pharmacy was closed, at 9:04 p.m., the telephone tech came back on and told me that yes, because of this special circumstance, out of the goodness of their hearts they would approve this ONE-TIME exception and authorize the local pharmacy to dispense a 30-day supply so that can start my radiation + Xeloda treatment on Monday.

On Christmas Eve.

Everything else I have to go through and put up with, and now I'm justifying my oncologist's treatment plan to a pharmacy tech in some phone center in Florida, because my pharmaceutical company has contracted for the worst prescription coverage in the western world.

And now tomorrow, I have to call the pharmacy back and they have to resubmit the scrip.

Hell, I probably should have called Elliot Siegal direct.

Saturday, December 15, 2007

when the other shoe drops...

Stage IV cancer is not a straight line, it's not predictable.
Remission isn't forever.
Part of me knows that and accepts that.
And part of me also knew that something was wrong, that there's no way I could lose five pounds in five weeks unless IT was back.

So I wasn't really surprised when Dr. Personality came in on Dec. 3 and told me that there was a new mass and that I needed new tests and to consult with Weiser again. Finally, after three and half years, she remembered that I don't actually live in NYC, but was relieved that I could take a couple of days for extra testing (too bad, no teaching in NBR this trip.)

Nothing lights up on the PET scan except a small tumor, 4cm x 2.5cm, in the area of the original tumor resection. It's pressing on and occluding the left ureter--so I needed a stent placed, and a radiation oncology consult, and next week I start the mapping for radiation which begins on (Merry Christmas to me) Christmas Eve. Then after radiation (6 weeks or 25-28 treatments, whichever comes first), a new PET and Weiser will re-evaluate me for surgery.

Other people go to Florida in February; I take disability.
One more time.

Monday, November 19, 2007

The prescription drug feedback loop

Lately, I've come up against a lot of angst and wringing of hands about advertising of drugs, prescription drugs in general, overprescription, the high costs of medicines. Usually, the finger is pointed at big pharma for all the harm done.
But you know, I don't think so.

Some of the angst I’m reading is just a little skewed. So here's a heretical viewpoint or six:
Not all generics ARE created equal.
Not all new drugs have a counterpart–-yet.
Not all drugs should be prescribed at the level they are currently used.
Pretty much no ad, good or bad, was created by the company who made the drug.
Docs don't always have control over the drugs that are dispensed, but insurance companies do.
New drugs are expensive, but I don't know why some of them cost what they do.

Mike Eades, a bariatric specialist I respect, blogged recently that ‘Any medication you see advertised on television has a less expensive counterpart out there.’ Well, that's not always quite the case. There may be a similar drug out there…and there may NOT be, yet. NDAs (new drug applications) are for a drug which somehow, some way, differs in mechanism of action or effect or is tolerable to different conditions or effective in lower or less frequent doses. There has to actually be a difference for it to qualify as an NDA, and get approved. Sometimes, that difference is the thing that makes taking that med possible for a percentage of the population. And if you really need the med, that difference can be the world.

This was all part of a blog discussing some particularly bad drug company advertising, that laid the blame for the bad ads on the drug companies. My response?

Drug companies don’t make the ads–-they buy them (or rather, the ideas for them.)
Advertising companies make the ads. Drug companies just approve the ads and the campaigns, but most of the time, they are babes in the woods when it comes to judging good work. Richard Jarvik for Lipitor, or 'prostate–-a growing problem' or Cialis ads are all a creative department idea (or failing). It ain’t the science selling that stuff. It’s the people the company pays to think up a way to market it, who sell it to the suits in the front offices of the drug company’s marketing group.

Sure, there are ad and marketing types in every drug company. But they serve mainly as translators to the creatives in the outside world who speak their own language and have their own sets of three-letter-acronyms. Internal media outsources the heavy lifting of creating the campaigns to the bona fide ad agencies. I used to be one of the ad agency people who had to come up with the marketing plan packages and the slogans and then sell it to the suits from whatever company we were pitching. Bibles, durable medical equipment, insurance, industrial washing machines, charitable giving programs–-describe your product and it was my job to sell it. I had to sell it whether I thought it was stupid or not–-which is one reason I am no longer in advertising! If the resulting ad is stupid or insulting, it’s because the drug company bought it, but not because they dreamed it up. So error in judgement for buying it? yes. Bad creation? well, um, no.

One very good series of pharma ads, IMO, is the one promoting pharmaceutical research and Glaxo Smith Kline. It shows researchers, and why they chose their area of research, but none of them promote a specific drug. It reminds me why I enjoyed creating the kind of advertising that makes you think (yes–-there is such a thing!) And it makes me proud to have spent 14 years doing preclin R&D drug safety research, and to now be making that work possible for others. It rings true in the context of the scientists I work with, and it feels real. Hats off to the company that created the campaign, and to GSK for not messing with a good idea.

The first rule of being a smart creative is to never show a client a bad idea-–because even if it’s presented in the context of five or six other amazing ideas, the client will embrace the bad idea every time. EVERY time. So shame on whatever ad company thought up the idea of talking mucus to promote the decongestant Mucinex…but I can’t really blame the drug company for buying it. It’s exactly the kind of cute crap suits from stiff companies love. It was my job as a creative to make sure that kind of bad choice wasn’t even presented to them so they wouldn’t make fools of themselves by choosing it. And clearly, someone in the ad agency dropped the ball the day talking mucus sounded plausible!

I really like the story of Mucinex, an over the counter expectorant/decongestant, which used to be available as the generic prescription guaifenisen and has always been available in liquid form as plain old unglamorous Robitussin expectorant cough syrup and its generic counterparts. The plain expectorant type of Mucinex, which I take daily because I live in the rain-soaked northeast (instead of somewhere like Tuscon), contains 600mg of guaifenisen–just like the old scrip stuff. The company that marketed the prescription version (which cost me about $6 for 60 tabs, versus the 50 cents per tab Mucinex costs), somehow failed to renew the right paperwork and lost the right to sell it about five years ago. Enter Mucinex, at approximately 8 times the price of the prescription drug. After about 12 months on the market, I began to see an unbranded tablet form of the drug that is relabeled and sold on the internet and in Walmart–but it’s a lower dose per tab…and the price for two tabs is just about the price for the branded med…so no payoff in going generic there. The generic is not equal to the branded product–you have to take more of it to get the same effect. And yes, in that case, the company is clearly protecting an investment in name and marketing $$$ with direct to the consumer drug costs.

But, to take this in another direction–-I belong to an employer-sponsored health insurance plan. In those programs, patients frequently HAVE to purchase the generic version of a prescription. The insurance company makes that decision–not the doc, and not the patient. The insurance company can deny coverage of any price in excess of the generic’s cost, and they do. Been there, paid the bills to prove it. On a doctor's scrip pad is a little box at the bottom, with the phrase ‘dispense as written if box is checked’ or something similar over the top. The doc must specifically X that box in order for the patient to get the branded version when an exact equivalent generic is available. Otherwise, the dispensing pharmacy can give out the generic–-per the insurance company branch of the healthcare industry. It would be the insurance companies and health care plans and pharmacies scoring on that one--not the docs, nor the ad agencies, and most days, not the patients, either.

One of my pharmacy benefits is that I am eligible for any med my company manufactures free of charge-–if it can be dispensed by a pharmacy and self-administered. The thing is, we make cancer drugs, so there aren’t a lot of meds my company makes that you’d WANT to be sick enough to have to take. And none of my cancer infusion meds qualified as being able to be self-administered, so no freebies there. But our employee prescription benefit, regardless of the health insurance plan chosen, mandates use of a specific mail order pharmacy…and any scrip for what the plan classifies a maintenance med MUST be written for 90 days, with three 90 day renewals, and filled by mail for a preset minimum copay (which can go up if the med costs more.) If the employee chooses to use the local bricks/mortar pharmacy, all fills after the 3rd one are charged 100% to the employee at the current retail price for the drug. And the prescription benefit for drugs that can’t be filled mail order or for those first three fills while a doc is trying to figure out what med/dose works for you, is a minimum $10 copayment, or 10% of the retail cost, whichever is *greater.* If the doc does a dispense-as-written 90-day scrip and you try to fill it mail order, it will be bounced back to the doc to rewrite if a generic is available. So I can’t just go in and ask to try Ambien unless I’m willing to pay the retail cost of the drug at my local pharmacy. Trust me, THAT gets old fast.

Anti-emetic pre-meds for chemo infusions were $60 for six pills (two infusions), and the low molecular weight injectable heparin I take daily is $100/month for 30 doses (charges for needles and syringes are extra, of course.) Neither med was eligible for mail order, so I had to pay 10% of retail (since it was greater than $10.) I pay for the sharps I need for the heparin out of pocket…it’s 30 cents a setup from my local pharmacist (who thinks it’s possible I have the worst prescription benefit he’s ever seen), versus 28 cents a setup if I were to get them on a maintenance scrip from the mail order pharmacy. The group scoring on this arrangement is not the employees…it’s the mail order pharmacy and the underwriter guaranteeing the policy for the company. I don’t think the company is scoring that well, either…but they wanted to set an example as part of the pharmaceutical industry. My *mother* gets her meds cheaper than I do…and I subsidize her medicare part D plan with my taxes. When she and I are taking the same med (thankfully, that doesn’t happen often, but it did briefly with a couple meds during chemo), I was effectively paying twice…once through the nose for my meds, and once via taxes for hers.

And no, I cannot justify the prices charged at retail for new drugs…even though I do know the average time to approval (it used to be 15 years; I think certain drugs, when fast-tracked, can be brought in under 8 years) and I do know the costs associated with developing a new meds. I am one of those costs, after all (IT support, and before that, the staff that actually compounded the drugs and did the preclin testing). But that is a feedback loop that is bigger than an ad campaign that prompts a viewer to ask a doc about X medication.

I think Saturday Night Live could do a lot with that material…or any of the commercial spoof sites. But I’m not sure the drug companies are the only ones responsible for the ads. I’ve learned first hand that what insurance will approve and what they mandate about scrips plays a huge part in what a doc will write, and what a pharmacy will fill.

As always…to paraphrase Arsenio Hall, it's all something to make you go ‘hmmm’.

Wednesday, October 17, 2007

And then someone notices...

Every since my first cancer surgery, the one in Feb. 2005, I've had a permanent colostomy. Sometimes, it's a pain in the butt (ok, I couldn't resist.) Sometimes, I forget and eat something that causes me discomfort, and sometimes stress gets the better of me which makes managing the ostomy a bit trickier. But overall, I seem to have gone through most of the last two+ years without feeling a huge impact on my life from having an ostomy.

Don't get me wrong--I am always conscious of it, and a little self-conscious. I can never go anywhere without knowing what the bathroom conditions are going to be like, without my emergency replacement kit, without being prepared. Some nights, I go straight home because the ostomy is uncomfortable or the stoma or hernia around it is painful. It impacts my life...but it doesn't derail it the way that cancer sometimes has.

When we were camping a few weeks ago, a friend from work made the comment that most of the people in the building had no idea I had an ostomy. Somehow, I just couldn't believe that could be true. They *all* know I had cancer, had surgeries, and that 'working from home' at certain times was a euphemism for 'having a chemo treatment.' And then today, a guy who had an emergency ileostomy 6 weeks ago after a bout of diverticulitis came back, and we talked...and it blew me away that he had no idea that I have an ostomy, and that I understood what he was going through and what he has to look forward to in the next few weeks when they reverse it.

Maybe the thing that is so obvious to me ISN'T that obvious to the rest of the world.
Goddess knows my self-image could use all the boosts it can find...

Monday, October 08, 2007

as if it was yesterday...

Tonight, I watched Kris Carr's self-portrait movie "Crazy Sexy Cancer."
I've seen it before, but only part. Tonight I caught the whole thing.

She was diagnosed on Valentine's Day, 2004, and she was chasing normal at the same time I was in MSKCC for the first operation. I watched the part where she's walking through Central Park with her new boyfriend, looking at Christo's orange flag installation and marveling. I got to drive home during that exhibit, but I was too weak to see it
any closer than the windows of the town car as it drove through the park. Watching Kris walk through the flags, watching her rediscover that life could be beautiful again...

It's like it just happened yesterday, like the first surgery was just yesterday.

Saturday, October 06, 2007

Camping at Sampson State park, site 232, Wine Country 2007

This post was supposed to include a shot from the lake, looking up toward the dog tent and the trailer and the road. 2 days of rain...and 3 days of the most glorious Indian summer weather possible. 5 days camping, completely unplugged, enjoying my friends and my dogs and a wonderful show circuit. Plus, Madison earned her rally novice title, outdoors on wet grass. Ch. Kabree Mad About you, RN!

Friday, September 21, 2007

Okay, just going to vent for a second...

I've been having back pain, intermittent and hard to pin down, since January.I've been on pain meds more or less since May...ibuprofen, which Dr. Personality upgraded to Celebrex in August.

When it hurts, it's mind-numbing. I literally cannot focus on anything else. It's a tearing pain that extends down my left leg and leaves my toes and sometimes foot tingling. Not good symptoms when you're also worried that the meds you're on might cause a stroke.

I was referred to an orthopedist who works with my oncologist, and they've ruled out cancer mets (whew!) and put me on physical therapy...which I've been doing faithfully since August. In fact, so faithfully that my insurance, which only covers 20 visits per year, is about to run out so I'll have to pay for it myself. But my PT can only go so far. If they try to add more reps or new exercises, I am racked up for at least a day, maybe longer, and have to take Lyrica to get through the pain (which gets me through the pain mainly by putting me to sleep.)

So finally, I asked for and they ordered an MRI; had it Tuesday.

It's not just the spondylolisthesis I already knew was there...a separation between L4 and L5 which they saw on the several CTs they've ordered since January. Tuesday's MRI shows an actual disc herniation between L5 and S1, apparently a rather large one. The extra weight I'm carrying in my abdomen and the pressure from the post-surgical hernias aren't helping.

I know it's not the end of the world and in the course of all the stuff I've been through in the last three years, this is not the worst thing by a long shot. But I am really, really discouraged right now. Funny how that works...because this morning I was excited that I seemed to feel better!
I know that the PT is working, albeit very slowly. This week I was able to wear pants I haven't been able to wear since the colostomy surgery. And I was actually excited about that...I've lost a good inch and a half from my waist and hips doing the breathing and abdominal contraction exercises which are the only ones I can stand to do every day. And I counted and it's been 10 days since I had to take any supplemental pain meds. So PT is working...but the way they described the herniation, it's pretty serious. It could compromise my bowel or bladder function if I'm not very careful. Great. Just exactly what I was looking forward to...not!

Jeez...some days I wonder why wasn't the stroke enough? Why wasn't cancer enough? What the @#$%! else can possibly go wrong?!? There's that old saying, 'if I'd known I was going to live this long, I'd have taken better care of myself.'

Oh, wait...I DID take better care of myself. Look how far *that* got me.

Ah, well, I know this will pass. But right now, I am really feeling like I'm taking two steps forward and then two steps back every time I turn around! I feel better. ;)

Sunday, August 12, 2007

My Sunline Sun Spot

Well, I never went to OH to pick up a Yoder Toter--because a local RV shop had a 1980 Sunline Sun Spot available that is turning into a LOT of fun.
Here are some pictures of the trailer on the first weekend when I picked it up. It's 4 1/2 feet wide x 10 feet long, and about 54 inches tall inside...a little bigger than a teardrop, but still only weighs 600 lbs. Mine probably weighs less because most of the galley cabinetry and the two inner seats that folded out to become a bed are gone.

On top are some pictures of the 'cleaned up' Sunspot, with new curtains, a cot/bed experiment, and a couple of galley accessories. Slowly but surely, it's getting there--and the late 80s red paisley tapestry curtains are gone gone gone!

cast iron find at The Christmas Tree Shop

Last weekend, while looking for 'stuff' for the Sunspot, I found this folding 24cm cast iron grill pan at The Christmas Tree Shop for $4. It's got a removeable bamboo and steel handle, and a low rim--perfect for a small serving of bacon or a quick quesadilla or burger. I seasoned it this weekend and made its first 'meal' -- splurged on some of the good organic pepper bacon from the farmer's market. This morning, I made a pork steak and grilled fennel. It's a very cool little grill pan, perfect for camping!

Monday, April 30, 2007

I've finally found the teardrop camper that I want, and now all I need is the time to actually go to Ohio to get it!

It's a Yoder Toter...double doors, finely crafted Amish woodworking, aluminum exterior with painted fenders. I don't know how much it will cost, but the teardrop fund is flush, and I'm ready. I'm worth it.