And the hair is leaving, right on schedule!

The little bristles of my whiffle-cut are falling all over the place. It started this afternoon, and just yesterday -- nay, this morning -- they were as secure as if they'd be there forever.

This is just what the medical oncologist predicted. "Let's see," she said, "Your first treatment is September 12? You will lose your hair September 30." Amazing thing, modern science. So glad I had my head shaved; it would be very difficult to stay calm about this while pulling big clumps out of my head.

I have towels on all the furniture I normally use, and we're not changing the sheets until the moulting has abated. Then, like a bird, I will await my new feathers.

The third day seems to be the iffy one.

I was full of steriod-fueled energy yesterday and this morning, but faded in the afternoon and actually had a bout of nausea (though no sickness) this evening. No mouthsores as yet, though I can feel them in the offing. I am trying a new mouthwash.

I did get a lot done today, though; many bills paid, some writing done, even a bit of my own work, plus picking up for the cleaners. And yard work! I have a whole strainer of green tomatoes, and Grandpa's tomato pickle recipe somewhere on my computer...

Not such a smooth groove, this time.

We got to the D-F rather early for our 11:15 appointment, and were very pleased to be taken immediately by the lab nurse. The IV line was placed in my hand, as it was last time, but it wasn't quite as comfortable (more on that later). Blood was drawn, and as we were wafted to the 9th floor by the elevator, we were thinking, "And maybe the doc will take us early, too." I had had a bit of pre-chemo anticipatory nausea, and so was riding in on an Ativan, which may have aided this delusion.

No such luck. "Just so you know, the doctor is running about an hour and a half behind schedule."

When I was called for the taking of the vitals, I mentioned that I would be amenable to seeing the nurse practitioner. "She has a patient scheduled too," I was told, "but we'll see what can be done."

The urgency is that I have to have the Neulasta shot (I had nearly written "foolish Neulasta," but since my red and white counts are both fantastic, I will refrain from bad-mouthing the Wonder Drug) 24 hours after the chemo treatment starts, and so, since chemo was scheduled for 1 pm, I had scheduled the shot for 3 pm.

At 1:30, I saw the NP. Looks like I may not see the actual surgical oncologist ever again, based on the schedule for the rest of my treatments. We talked about this and that, and I learned a thing, namely that withdrawal from steroids can cause shakes and heart flutters. So, instead of using less decadron, I will use more, tapering off instead of stopping with an abrupt bump.

Then there was a half-hour wait in the infusion waiting room, while the infusion gnomes hand-mixed my particular kill-to-cure brew. We are now pushing 2:15, and I am starting to stress, because re-scheduling the shot will not be fun.

Finally, we were brought into a slightly less pleasing infusion cubicle than the last one, and that's where the fun started. See, the first chemo, the one they "push" is a  vesicant, so it's really important that it not leave the vein into which it is getting pumped. (I will ask how it doesn't damage the vein next time -- I do know that this one can damage your heart.) And as the infusion nurse began to administer the drug, my hand began to hurt. Not burn or sting, but really hurt, both downstream from the insertion point and around it.

• Analysis: The IV line is poorly placed -- probably nudging the wall of the vein. Best to replace it.
• Further Analysis: If you are having infusions at Dana-Farber, ask if Anne Lundquist can be your infusion nurse. The woman knows venous anatomy, people. She went for the large vein that curves around the outside of the forearm like it was a well-known street a few blocks from home.

And all went smoothly after that. Also, I learned another thing! (Two in one day!) It seems that:

• Some mouth sores can be quelled by chewing ice while the chemo is being administered -- but alas, not for this type of chemo.
• The mouth sores generally are worst when one's immune system has crashed. Therefore, they are a fairly reliable indicator of when one ought to be staying away from folk.

This fascinated me, and made me feel rather differently about the durn things.

I do feel both peculiar and queasy, but I was able to eat chicken-and-rice soup with a zucchini cut up in it. (I am not telling anyone how long it took me to type this entry.) And now, bed.

(Oh, do not be scared by the pictures in the Wikipedia entry. This is much more mild.)

Hairlessness is strange

Today I had the nice lady who cuts my hair shave it all off.

While it would be nice to believe that I wasn't going to lose my hair at all (and it certainly looked all strong and springy), certain signs from regions other than my head are warning me that the lossage has begun. So, she gave me a wiffle, which feels really strange. Girls almost never have cuts like this, and I had no idea that hair was so firmly directional in its growth. And family legend is correct -- I do have two birthmarks above and behind my right ear. I can't see them, but confirmed that they were their. The lady with the clippers referred to them as "raspberries," so they are not large.

I don't look as bad as I thought I was going to, which is a relief. The eyes looking at me in the mirror are still mine, and with a headscarf on I look like something out of Bruegel. Or a Pirate Queen. Or both!

Since we had a warm and humid day, the cooling and evaporative functions of hair were immediately apparent by their absence. But, I will adjust. I think I will be more comfortable, though, when the hair finally does fall out and I don't have to deal with all these prickles.

I wish phrenology were still a science. Then I could Bare All for Science by simply removing my hat.

Honestly, I was a little distressed thinking that I might become distressed. And it is a bit distressing. A very ashes-to-ashes moment, seeing all one's hair on the floor like that.

"Behold your servant, Lord, a sheep of your own sheering."

A few homely truths

So, a few things I haven't read in the chemotherapy literature, but which seem to be true based on experience.

Chemotherapy makes one's urine smell like the distilled effluvia of a dozen swamp monsters. Not that I've spent a lot of time distilling swamp monster effluvia, but you get the picture.

Mouth sores happen mostly at the hinges of the jaw. This can make eating difficult even if you've rinsed with baking-soda so that your food doesn't make things worse. They also seem to occur at the edges of teeth. I've fallen asleep and awakened with a nice fresh crop, right along the line of my upper teeth. Therefore, one bites and chews with great care. If I needed lessons in attentive eating, this would be it.

Baking soda rinses make orange juice taste very odd indeed.

The weary, weak feeling caused by chemo is more like mono than it is like the weariness after surgery, or childbirth. One feels as though one could zip through a series of errands, only to accomplish one or two and have to return home for several hours of rest. (I would not have expected the literature to tell me this, because how could the writer know the reader's experience of health or illness?) I expect that my experience with all three sorts of exhaustion is helping me to bear this -- it must be pure hell for some of the more vigorous, athletic types to be so reduced.

Still can't get rid of the Billings

The Blue Cross Pharmacy says to just destroy the check they sent us. When they back out the payment and the bill (and apparently that process hasn't even been started yet!), they will note that the check has not been cashed, and will absolutely, positively, NEVER EVER think of bothering us to reimburse them.

And the Titanic is berthing in New York any day now.

As Terry Prachett might say, "I'm not so much green as I'm cabbage-looking." We're voiding the check, but keeping it, along with a notation of the name of the person we spoke to and the date and time of our speaking. That way, when they ask for their money back, we will be able to kindly and sweetly return it to them.

Nearly normal!

Still a bit tired, and still have a grumbly tummy -- but the worst right now is mouth sores, which are changing the way food tastes, hurt, etc. Potato chips, for instance, not only hurt to crunch -- they don't taste good, since the fat makes them too acid. Walnuts the same.

Baking soda rinses help, and in general I am eating (though way less than usual, not a bad thing.) I am managing apples, because now is Fresh Cortland Apple season. :)

And I am starting to feel some strength. I hope to get some yard work done tomorrow, as well as some shopping for a new trash barrel!

And now, the weird stuff starts...

Mouth sores, little fevers, floaty head, right on schedule. But I am not complaining. I have strategies for all of them. And groceries got bought, and it was good to be out of the house. Bravest came with me, and we didn't talk about cancer once.

Slightly better

So, I am still as gassy and disgusting as an 11-year-old boy with a bottle of root beer and a belly full of bean dip. But, on the advice of the nice people at D-F, I also have Gas-X, which is helping. Still quite uncomfortable, though.

The lack of appetite is not playing well with the blood sugar drugs. I may have to talk to someone about that if this doesn't let up soon.

But anyway, there was slight progress -- a long shower, a bit of a drive, a little walking around.

Today was a bad day.

Woke up with all the signs of a steriod overdose -- racing heart, shaking hands, the works. Today was the first day I didn't have anti-nausea medication to take, and while I have not been nauseated,the gas pains are extremely painful. I was probably led to eat what I shouldn't by the fact that I felt so well yesterday.

Oww.

A Faithful Reader enquires...

... what I plan to do when my hair is gone?

I am taking a variety of approaches, including bandanas and crochetted caps, and a rather magnificent pale mauve cowl I am knitting for myself.

But no wig, because anything less than the hair I had (I've already had it down to an inch, and it's already back to two) would depress me more than being bald will. Besides, would YOU wear what this here prescription I have in my hand calls a "scalp prosthesis"?

I should start seeing the new hair in December, anyway. So, that's that.

Oh, and no pink, for the love of God.

And yet MORE billing

Blue Cross has sent us a co-pay for the Neulasta I never picked up at the health care plan. So tomorrow (today) I get to call them and ask what they want me to do with this Very Large Check.

This whole thing is totally, patently, absurd. Kafka could not invent it.

In other news, I am feeling OK, and expecting to feel better.

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?