As well as could be expected.

We got to D-F only a little late, having underestimated the demand for cabs in the morning. We did have to double up with a younger Russian couple, who had a lively conversation all the way there, in Russian. As we got out, I dropped a "SpaSEEboh!" on them and made them jump, thinking I had understood their entire conversation. One word in 10 would be more like it, but it is always a mistake to assume that the people around you do not understand you.

Feeling rather clever was a nice prep for the day, which went very smoothly. I'm tired, and very slightly queasy, but it could hardly be called nausea. More reflections later.

Oh, the correct med list was finally in the System, put there by the same Nurse Practitioner who wrought so mightily with Blue Cross for me. No matter how good you make a System, you have to have good wetware to smooth out the silicon/carbon interface.

So, I guess this is where I screw my courage to the sticking point.

Chemo starts tomorrow. We have really no idea how it will treat me, so we are preparing for many eventualities, from buckets-beside-the-bed on upwards.

But the anticipatory tummy wobbles I had yesterday may actually have been a bug, as Bravest is poorly today.

Anyway, I have a bag of comforts ready to go, the table and alarm clock are both set, and it only remains to say g'night to a few online people. Don't be surprised if there's no posts for a couple of days.

Finally!

Two syringes, packed in cool-pacs and styrofoam, arrived this morning and now repose in my refrigerator. Price: $0.00.

Whew.

I'd give up, but what good would that do?

Oh my goodness, people, has this been a hellish three days!

As you may recall, I was trying to figure out if I could really get Neulasta, the Wonder Drug, sent to me at home from the mail-order pharmacy used by FEPBlue. The answer appeared to be "yes," and the co-pay appeared to be $0.00 -- a truly amazing and even a bit concerning difference from the original price of $1961.00 that I was given by the healthplan pharmacy.

So. First I had to go through getting a pre-authorization done again, which meant getting the telephone number from the insurance company's Customer Service Rep and passing it to the doctor's office. And then I had to get the prescription sent to the pharmacy, which meant getting another number to the doctor's office. And then I had to get the original submission to the healthplan pharmacy stopped, so they don't bill me (this is still incomplete).

This is where we should all heave a sigh of pity for doctors who don't have the totally awesome staff that the Dana-Farber doctors have. Because when I tell you that eventually today there was a THREE-WAY CONFERENCE CALL between the insurance company, the pharmacy, and the doctor's office in order to get the pharmacy to agree that yes, they had the prescription, and yes, they had the pre-approval authorization, and yes, the co-pay was indeed $0.00 and yes, they could arrange delivery -- all of that is only a faint shadow of what we have all been through trying to get this done.

Because first we had to get the insurance company to agree that even though they had paid the claim to the healthcare plan, I could still have a different prescription pre-approved.

And then we had to get the insurance company to fax a copy of the pre-approval to the doctor, so there was proof somewhere else other than their computer that this was so.

And then we had to get the pharmacy to agree that even though their computer wasn't showing the pre-approval, the fax from the insurance company PLUS the verbal confirmation from the insurance company on the phone was evidence that, in fact, the pre-approval was a real pre-approval.

And when I say "we" here, I mean that there were multiple rounds of me being told by Person A that "It's all set," only to call Number B and be told, "I'm sorry ma'am, I'm not seeing that in our System." and then calling the doctor's office and wailing and gnashing my teeth.

Between this and work and catering funerals and all, my stress bucket is so full that when they plug me into the chemo IV I will probably just fall asleep. The floor is tear-stained around my nice new recliner from all my horribly frustrating phone calls.

And all of this is because there's no part of the System at Enormous Giant Insurance Company Blue Cross that says, "Waaaaaaitaminute, don't we have a less expensive way to meet this patient's needs?"

I'm telling you, one and all -- while computers are wonderful things, software has to be constantly reviewed and adjusted to get the most out of any System. If you don't spend money on the perpetual improvement process as part of your commitment to The System, what happens is crap like this and like the multiple billing problem at Brigham & Women's and the anesthesia practise billing breast cancer patients for shoulder surgery services.

It's stupid, wasteful, and most importantly, it adds enormously to the frustration patients experience at what's already a sufficiently difficult time. It makes We the Patients feel certain that someone is taking advantage of us somewhere, makes us resent the bureaucracy that surrounds the healing process. And if more and more of a hospital's or insurance company's or a doctor's funding is going to come out of the public pocket, resentful taxpayer patients are not a good thing.

Right now, though, I'm leaning towards finding out where the servers for Partners Healthcare and Blue Cross of Massachusetts live and strolling through the premises with a very potent magnet. If I can manage to destroy their software, maybe they'd have to build a better system from scratch.

Further research indicates...

...some interesting things.

 

First thing today, I called the medical oncologist's office and arranged to be called back with answers to some of my questions. Then I called FEPBlue, the federal Blue Cross people.

 

And the Customer Service person there told me that if I got the syringes sent to me by their email service, the cost would be only $70 for up to 90 days worth. I only need 60 days, but apparently it would be about the same. The nice lady gave me two numbers to call; one for the pre-authorization, and one for the "Special" pharmacy.

 

!

 

Then the doctor's office called back, and I found out that if I drive into Dana-Farber the day after my chemo treatment, the Wonder Drug (neulasta, if you're wondering) would cost me....

 

Are you ready for this?

 

$0.00

 

Y'see, if I get it at Dana-Farber, it can be billed as part of my "chemo footprint".

 

A few hours later, I got another call from the doctor's office -- the pre-authorization had been submitted, but I needed to call the "Special" pharmacy to find out my co-pay. So I did. And... my copay is not $1,961, and it's not $70.00.

 

My co-pay is $0.00. Because this is a catastrophic illness, and I have already used up my catastrophic deductible for the year. Apparently, this information was not available to the insurance people who gave the original co-pay quote to my health plan's pharmacy, because it came through the regular approval process, not through the "Special" pharmacy that's part of the mail order pharmacy.

 

Are you following this, Gentle Readers? To summarize:

• If I was to buy this drug outright, two syringes would cost me between six and seven thousand dollars.
• If I had shrugged my shoulders and accepted what my health plan's pharmacy was told by the right hand of my insurer, I would have paid $1,691.00.
• If I had gone with the first information from my insurer's left hand (whose activities clearly are not well monitored by the right hand) when I called them, I would have paid $70.00.
• If I had gone with the information from Dana-Farber, I would have paid $0.00, but might well have shelled out $100.00 in cab fair there and back if I'm not well enough to drive.
• As it is, it seems (and that caveat is there because at this point I am so confused that I am fully prepared to be told I have to pay my weight in diamonds) that I will be paying $0.00 to have the drug mailed to my home, where I will take it on a very short cab ride to Medford, MA and pay $20.00 to have one of my health plan's nurses inject it.

 Let's see... I make that three different sets of information from the same insurer. And while I am pleased to be paying $0.00 (assuming that's what ends up happening), I am appalled as to what this means with regard to the effort to reduce health care costs by making people better consumers of health care. I mean, WTF, Blue Cross?

In related news, it seems that the speeded-up schedule for chemo DOES have a medical purpose. There are fewer metastases and recurrences when the schedule is accelerated. So it's not just for my convenience and to allow me to attend Thanksgiving dinner with the chemo all behind me. :)

I would also like to point out that when I was given the recurrence/metastaes stats by the Dana-Farber staff, they told me both the initial risk (what could happen if I did nothing) and the absolute risk (what could happen if I did the treatment). They did not tell me the relative risk, which is that the chemo reduces the chance of recurrence / metastases by 50%. Which sounds like a lot, until you realize that you're starting from 15%. Relative risk is how drug companies sell, and by not putting a lot of emphasis on relative risk the Dana-Farber doctors appear to be fighting the Boobeaucracy from within!

Yesterday was a sad day.

My friend John died yesterday-- peacefully, at home, with his wife and children and a couple of good friends by his side. That's the way to do it.

I went over later and helped wash his body. It wasn't bad, as the hospice visting nurse had done the messiest parts. It was more a way of honoring the vessel that had carried his soul through so many joyous and difficult years. We talked about recent memories of John and things we'd done with him -- his wife even got out a scrapbook their daughter had made from their most recent trip to Puerto Rico.

Their son has given up his summer to be with his father so his mother could keep working. I took him for a ride over to Burger King (paying attention to the road on a day like this is tricky, as I know well), and we talked about everything except what was happening, which was exactly what he needed.

I expect to be busy helping out with the wake and memorial service early next week.

Sad, but also good. It helped me remember that death is not the enemy. The enemy is whatever makes us lead an empty life.

I think I should just create a tag for money talk...

The pharmacy called today. You know the drug that's supposed to help my immune system out so I can do the chemo more rapidly than usual?

The co-pay, as in, "the money you pay after the insurance company has paid their share is $1,961.00 for two injections. And I will need four.

It's not like we don't have the money. We do; though I am starting to feel guilty about being such an expensive wench. But... we may re-think this "fast-track" approach. I need to find out if it would alter my probable survival rate to do the chemo more slowly.

All the other drugs? I got them as generics; the total cost was less than $10.00.

What the hell do people do who need things that are even more expensive, and more essential to survival?