Any one got extra white blood cells?

Well, crap. My WBC (white blood cell) count is pretty low, so I won't be able to do my regular rounds scrubbing toilets at the walk in clinics.

I'm too low to do treatment now, but am scheduled to go back later this week to see if my counts come up to normal (low) levels. If not, I may have to either take some shots to increase my WBC production (thank you Amgen!) or potentially delay treatment...a pretty horrible option from my point of view. So...we know what we're praying for this week.

Just reviewed the financials so far, for those of you that are interested. So far >$35k billed to insurance company, $29k of which was reviewed, insurance company is paying just over $8k, we're out about $1k in various fees/copays, etc so far.

The startling number is the difference between billed & paid, $20k (once you remove what we've paid). I'm not exactly sure how the whole system works, but I'm surprised nonetheless at the dramatic difference between what a hospital bills for service and what the insurance company will actually pay for that service. This is where a known issue that a lot of folks have duped has come in, where the hospital bills the patient for the balance (which is illegal)--and if (they have not) my hospital did it, we'd receive an invoice for $20k in unpaid balances. Not a risk in our case, but I'm not surprised about the how/why it happens. The surgery is the largest discrepancy, by far--only about 15% paid by the insurance company. In my opinion, for all that was done that day, the number paid out is exceedingly low for the number of specialists involved. Remarkably low. Hospital losing money kind-of-low.
Each day of chemo is billed at just over $2k, insurance paid is just over $1k, and out of pocket is $25. That doesn't include the secondary/prophylactic drugs (anti-nausea, etc.) that I take at home.

That being said, three things from this:
1. Insurance companies apparently are doing a good job negotiating rates with docs. I'm surprised that docs are willing to participate at this % of their fee schedule.
2. I'm delighted by our insurance coverage. The largest expenses have been meds and copays, both a deal considering the nature of the disease. Financially, we hardly have cause to bat an eye...especially when I compare it to our investment performance.
3. If you don't have insurance, you have a hell of a lot of room to bargain. The first question you should ask is what would a large insurance company pay for this same procedure, that alone could get you an 85% discount from "list"! Then go from there on the negotiation...

Back to growing some more WBCs.

Day 2.5 - Feeling Like Rock Star

It is pretty odd to think that I have something actively trying to kill me running around my body...and more than that, that I'm actively pumping poison into my veins on a daily basis to kill the stuff that's trying to kill me...along with some collateral damage in the form of my hair, skin, nails and (yikes!) kidneys and liver.

Especially odd because I don't feel much different from a month ago. Except for the scar and the missing piece of my former self.

Just got home after working all day plugged into chemo. It feels pretty good to keep stuff moving along at work and especially with the team I've got, they're a bunch of good young people, I'm pretty impressed by how they are all stepping up. I mowed the backyard...the new grass was about 6" high, it looked like a wheat field out there.

So, no nausea, no hair loss (not expected at this point), no real fatigue. Just another regular day. Feeling like as much of a rock star as I can.

Day 2 Getting Started

Had a great walk and a big meal last night...not even a lick of nausea, which is a damned good sign. It was an early night, probably more due to the first long walk since surgery...I don't think the drugs would've caught up with me that quick, but who's to know? Got up for about an hour or more last night, I think it was mostly nerves. It is amazing how this stuff will consume your mind in any free moment.

Key learning: Distractions = sleep. Focus on disease = sleeplessness.

Anyway, should be a shorter day today. Took the Emend via capsule and got started much earlier. And so the slaughter continues...

End of Day One - The Drug Haul

Well, that was pretty durned easy. The day took a little longer than expected...about 7.5hrs total. We had to go a bit slower on the Cisplatin because it was burning my arm, but no big deal.

We got the drug haul today:
Emend, 2 capsules. one for day 2 and 3. I got it via IV for day one. Treats the nausea. Expensive drug...apparently $300 retail for 2 pills, $60 copay. Yikes. If it works, I'd pay more than that. Go pharma companies...you rock. No matter what combo of marketing/R&D/lobbying they do, as long as they can bring these magical concoctions to market to save my life...God Bless 'em.
Famciclovir, a bunch, one a day. A pre-emptive strike to prevent the canker sores that have plagued me most of my life--and that I'll be especially prone to over the next 83.5 days.
Lorazepam, a bunch, if needed. Anti-anxiety drug, there for nausea though it suspiciously lists it as a side effect. Hopefully I can avoid these, apparently they're good at putting you to sleep though.
Prochlorperazine, a bunch, as needed. For nausea should it strike.

The glass is now 1/84th full.

Day 1 of 84 Chemo Journal

Pretty uneventful so far, got in around 8:30 to sign in, pay our copay and wait to get started. I'm getting an arm IV vs. the port, so have to get that "installed" each day--not bad at all, by this point they don't even warn you about needles anymore, it has become standard practice.

So...paid and wating by 9ish.
Bloodwork at 9:15.
Cleared by doc for chemo by 9:30.
IV inserted about 9:45.
Got comfy & waited for nurse & med instructions...
Talked with nurse, reviewed routine and all drugs/drips.
Plugged into saline for 2 hrs at about 10:30.
Started pre-meds for 1 hr (3 different bags of goodies) at 12:20ish.
Started chemo at 1:20 ish. And so the slaughter begins.

I've got a comfortable chair, and Melissa is with me. TVs here and lots of other folks. Pretty surprising how many people are here...have to be 20 or so. A few distractions are readily available with the TV/DVD/VCR combo, a library and my iPod.

Been on a saline drip for 2 hrs to hydrate, on my premeds now for nausea and the diuretic to keep the flow going for my kidneys. Nothing to worry about so far beyond the trips to the bathroom with all these damned tubes...six bags in total, and what looks like a cell phone from 1978 controlling the show. Carting this thing in & out of a bathroom is crazy...