Hiatus day

Also known as New Year's Eve.

And this is just to reassure my friends and family that, while I didn't love every minute of 2011, it was by no means the worst year of my life. (That would have been 1985. Ask me about it sometime when you have a week or two.) For one thing, I found out all over again how many really nifty people care about me.

I do hope that we can all have a year without major health crises, and there are a few other things I'm hoping against hope for, such as  decent restraint in the United States' electoral politics. But, all in all, I look forward to 2012 without conditions. After all, were it not for miracles of modern science, you wouldn't be reading this, because I'd have no idea yet that I had cancer at all. As it is, I am cancer free, and soon to be treatment free.

HUZZAH! And Happy New Year!

Countdown: Six!

The targeted treatment, or "boost" takes such a short time that positioning the Huge Device takes longer than the treatment. Also, I saw the nurse again today for a few moments, and though my radiation burns -- expecially the one under my arm -- look as though they wanted to grow their own mouths and eat my fingers, I am really doing fine. Things should be much better in a week.

Not much else to report, except that another day is knocked off the Radiation Calendar.

Oh, and the seed/flower catalogs have started to arrive! I am going to bring some in and leave them in the waiting area -- much more cheerful reading than another People or Real Simple magazine. (The latter is so thick with ads of things you can buy to simplify your life that it could serve as the dictionary illustration to define "oxymoron".)

Countdown: Seven! -- Things I Wish They'd Told Me

(Please note the updated hair picture. I figured the Dome was worth documenting once.)

• The goop you have to slather on your breasts will play merry hell with your clothing. Wear your oldest, softest, saggiest undergarments, and be prepared to throw them away when it's all done.
• If the goop don't get your clothing, the B.O. will. Tom's of Maine unscented smells funny in its own right (hops and rosemary, rather like soup), and is remarkably ineffective.
• Don't go swimming. I didn't do this, but I had to figure out not to do it myself.
• When they say you will "get tired", they mean you will battle through waves of exhaustion. This is different from merely being sleepy. The waves can be battled through, though!
• Hot showers are a bad idea. Try lukewarm. I was told this eventually, after my skin was all broken down.

There may be more later. We'll see.

In more cheerful news, my husband and I met 21 years ago today! Which I guess is more of a "Today in History" entry than "News," but it still seems like news to us. :)

Countdown: Eight!

So, the word is that two weeks from today the area under my breast will be all healed up, and the area under my arm nearly so. Because we are not treating any of those spots any more. Further, we're not going to be treating the new spot long enough to cause any major skin breakdown. And I have enough goop to last through the end of treatment.

"The end of treatment." What a concept!

Today was not a wonderful day, but the lack of wonderfulness had nothing to do with the cancer. As most who know me know all too well, I am clumsy to the point of being a danger to myself and others. And today... well, let's just say that a sudden spurt in the fruit-fly population will come as no surprise, and I'm not sure the situation can be resolved. And all because when I drop things I'm trying to cook with they often bounce off my shoes.

As The Bravest Man Alive has cause to say far, far too often, it's a very good thing my parents didn't name me Grace.

Things I Wish They'd Told Me will be addressed tomorrow.

Countdown: 9!

I said this entry would be Things I Wish They'd Told Me, but that's going to have to be postponed for a day or two. Because other stuff happened today -- good stuff!

First, though, I am sorry to relate that the clinic where I'm being radiated changed my schedule and somehow didn't tell me. So the schedule I'd been handed said "3:10 PM", but they had me scheduled for 3:20. Which is fine. It just means I was never late. On the other hand, someone should have told me. And this is especially true because when I found out my schedule was changed and was given a new one, it had me all over the place for these last two weeks -- 3:20, 3:10, one day even at 3:00!

So, naturally, I asked what the [REDACTED] was going on and why I hadn't been told, and no one knew. No one knew who had changed the schedule, no one knew why I hadn't been asked if it was convenient or informed of the change, etc. (Don't worry, that [REDACTED] isn't covering up any profanity.)

So today I asked to speak with an administrator, and lo, the head of the clinic was covering phones (it being a holiday week) and she has promised to get to the bottom of things, not because anyone needs to be disciplined, but because communicating changes to people who are going through a lot already is one thing a clinic of this type should do exceedingly well.

AND THEN. After my treatment (which occurred on time), they took films of the new treatment positions! There will be three of them -- one to the left, one to the right, and one over my left shoulder. This "field" approach is necessary because the tumor was almost at my chest wall, and they need to radiate the site without blasting my heart. The aperture through which the radiation will pass is much, much smaller. HOORAY!

It's really going to end on time, folks.

Countdown: 10!

After today (yesterday, as I write this), there are only nine treatments to go! Time to take stock of how I'm doing.

• The skin under the breast is tender, raw in places, and starting to itch. This is being eased, though not eliminated by wearing a thin, honeycomb gauze called Cuticerin, which I impregnate with a thinner version of Vaseline (called Aquaphor), and then cover, first with non-stick gauze pads, then with a large, thick pad, and then with a bra. It's rather messy and uncomfortable, but it does help.
• The skin under my arm is ready to secede from the Union, leave the planet, and join the Klingons. It's red, angry, sore, and getting worse by the minute, and there's very little to be done. Armpits naturally rub against stuff including the other side of themselves, and that's that. My various bulges and blobs don't help the situation. But people who have slender bodies and small breasts have their own issues with radiation, so I am not repining.
• The weariness is here, but I am dealing with it. Pushing through it as I can, and sleeping when I must. For example, on Christmas Eve I finished the last hat of my Great Hat Project (hats for all the Sunday School children, which is only eight, but the girl's hats were complicated), wrapped them all, went to church, made dinner, and then went over to my son's house to set up presents for the grandbaby. I was reeling with weariness through most of this, but it all got done.
• Hair is growing pretty fast now, and as far as I can tell is coming back exactly as it went. I can't tell if it is going to be more curly yet.

Wednesday, I will start the targeted portion of the treatment. The radiologist tells me that because the tumor was deep, nearly against the chest wall, they may still have to use a "field" approach to treatment, which means some continuing damage to already treated areas, but there's only eight days of it and at this point that's a mere bagatelle.

Countdown 9: More Stuff I Wish They'd Told Me

Re-scanning

Today was quite a day.

First, the sales team on my current proposal decided we really couldn't bid on the contract as specified by the RFP. (Financial issues)  Always a relief, even though this one was going fairly smoothly. I spent some time drafting a no-bid letter.

Then, out of the blue, the IT guy for my office calls -- I have to bring in my old laptop TODAY so he can pick it up tomorrow and get the data on it swapped to "my" new laptop, as the warranty on the old one has expired. So, schlep through the Route 1 traffic and back, because I also had to be at the radiology clinic early. Why?

RE-SCAN! This means I am nearly done with the whole-breast radiation and the physicists need to plan out the targeted therapy. I also saw the nurse and the doctor, picked up some different pads and bandages and goop for keeping the radiation burns to a minimum, and waited for more than an hour because the radiology team was backed up. Oh well, it just meant more knitting got done on my last hat.

The doctor and the nurse have no idea why I'm cold. The nurse suggests the anemia; the doctor, a hormonal imbalance. This actually makes some sense, as I was just starting the hormonal part of menopause when all this cancer business began. (Long story, but in essence I went through the physical part of menopause early due to a medical condition; but this left my ovaries intact and functioning, and they are just now starting to conk out.) And also, all my friends who told me they had cold issues are close to my age, or were when they had cancer. I will be asking the PCP about this.

And the cavity where the Lump was removed has really shrunk! The doctor is quite impressed with the surgeon's work. According to everyone, my skin looks "great -- considering..." which is the best it seems I can hope for.

This was a lot more driving than I have done recently, and through some difficult traffic, so I arrived home fairly beat. Fortunately, there's always pizza.

The Cold

At church yesterday, four or five of the ladies of the congregation who have also gone through various types of cancer treatments were talking with me about side effects and this and that. Referring to radiation, one of them said, "And I was always cold." And all of them nodded.

Ah, yes. The cold. It's like a live thing. I can feel objectively that I am warm; my hands and feet are warm, my skin reports warmth. But the cold still strikes. It makes the non-hair on my body stand on end, makes my legs twitch, makes me shiver. It's like a wind blowing where there is no real wind. Covers comfort, but do not eliminate it.

My mother spoke of this when she was being treated at the Gamma Knife Center at the Boston Floating Hospital, in a last-ditch attempt to shrink the biggest tumor.

Ah well, at least I know this isn't unique. And I also know there's no point in turning up the heat.

And more billing... / Other news

I have yet to contact the billing people for the Radiology clinic (problem for next week), due to an outbreak of bills from Dana-Farber. These were bills for bills that we had already paid, so today after getting home from the rays I called the Magic Billing Number with the bank account open on the computer in front of me.

Turns out that when you pay by credit card or by letting D-F directly siphon money out of your bank account (as if THAT will ever happen!), all is well. But if you or your bank sends them a paper check, it may take several weeks between the time the check clears your bank account and they get around to posting the payment in their internal accounting system. They are "several weeks behind," to quote my source.

In the meantime, their billing system keeps spewing out bills and threatening patients with collection actions, and maybe even referring them to collection agencies. FAIL, as the kids say. The fact that you laid off too many people in accounting does not give you the right to screw up my credit rating. You have been paid; cease the threats, or you will be PWNED. (Another internet-ism.)

Seriously, I have a lawyer friend who takes just such cases pro bono and pursues them with great gusto and persistance. And if they mess with us much more, I will be calling him in.

Anyway, our account has been annotated with the check numbers and we are not to send any more payments for these particular bills as that would only make them have to generate a credit and lead to more work for them.

In other news, I am definitely feeling and seeing peachfuzz. To my great joy, it seems to be coming in dark on top and white at the sides, so I may be getting my old hair back!

I am also switching to a concoction called Jean's Cream, which has aloe vera and Vitamin E and isn't made of motor oil and parabens. I am already finding an improvement.

Last treatment is January 6

For those keeping track of such things, that's the Feast of the Epiphany, aka Three Kings Day or Little Christmas. Which all seems appropriate somehow.

I am starting to have some fatigue and skin issues, for which I get advice from every quarter. The whole situation rather reminds me of the issues I had breastfeeding, lo these many years ago. There were about six different nurses at the hospital where I was immured for a whole week, each of whom had a different recipe for dealing with my bloated and cracking mammaries. This being Springfield, MA, there was no one who specialized in such things, and naturally neither the OB doctor (who only cared about me from the waist down) or the pediatrician (who didn't care what the baby ate as long as he gained) had anything to say at all.

Turns out the nurse who recommended the heat lamp was the right lady for me; I am now in search of her equivalent.

On the good side, I am really enjoying my current proposal. The combination of enough energy to really get the work done and a good proposal team is making this one a very smooth process... so far. I just hope I can keep up with things as time passes -- I may have to hand this off to someone else.

Tomorrow I go into a frenzy of on-line shopping!

Billing, take 2

Constant readers will recall the issues I had with confusing bills (shoulder surgery?) from Brigham and Women's Hospital.

Well, rejoice and be glad, because now it's the turn of Dana-Farber and the Winchester Hospital Cancer Treatment Center!

I had gotten and paid bills for $20.00 for each of my chemo visits to D-F. "Cool," I thought. "These are only costing me what a co-pay at the health plan would be!" But no. I am now receiving bills AGAIN for each of my chemo visits. Each of these details the actual chemo treatment itself, and depending on what happened at each visit, each is slightly different. For example, the time they had to look for a new vein in three different places and call in a phlebotomist was a lot more expensive than the time the blood draw nurse hit the right one immediately.

And Winchester has billed me for three radiation treatments at three different rates, all occurring on my first visit there -- when I received no treatment at all, just went through the simulation process. I am sure this is yet another issue of the codes not keeping up with the technology.

Bravest is adopting a very lassiez faire attitude to the whole thing. On his recommendation, I am paying everything and assuming that the parties responsible will eventually sort it all out and reimburse us if we are owed anything. After all, B&W just sent us a refund for an over-bill from his thyroid surgery in March of 2010.

Well that would explain a lot.

So, it seems I havea UTI, and a subsidiary sinus infection! The good news is that my kidneys are fine, so I don't need to go to the hospital for intravenous antibiotics.

Expecting to feel better soon!

When it isn't even spring

This is not only a reference to the amazing (and kind of creepy) warm weather we've had this November, but also to the fact that I've been running a low-grade fever for a couple of days. "Low" as in nearly 101. I'm going to the doctor tomorrow morning for the second time in two weeks, and this time I intend to stay there until someone gives me a better diagnosis than "Well, let's see if it's still a problem after you're done with radiation."

This difficult time (I have been trending lower for more than two weeks now) has also brought something else into perspective; that people around me rather expect me to be tough and cheerful, to have a "good attitude", to "bounce back." And I rather expect this of myself -- at least, I don't want to disappoint people. So, I've been trying to work when I wasn't really well enough to work, and trying to do all the chores when I wasn't really well enough to do all the chores. The result has been exhaustion when I was expecting to feel stronger, and a lack of patience with myself and others.

This problem is compounded, in our household, by the fact that Bravest, in dealing with his disability, has lived his life with the idea that there's some sort of moral failing involved in asking for and receiving help. For anything. Mostly, this has served him well. When you ask for help, you put yourself in the hands of the person you have asked to help you. Especially in the case of a sensory disability, this gives the "helper" enormous power over the "helpee".

But, just as I had to learn in my days of poverty how to be a gracious receiver and still retain my independence, this seems to be the time for me and perhaps for Bravest to learn that sometimes you can't be tough. You have to admit that you can't, and ask for help. Which may come up again this weekend, as right now I very much doubt if I can do the grocery shopping without falling over.

Oh, why should I have spring fever, when it isn't even spring...

Zaptastic!

The zapping continues, though I have another "short" week this week, due to preventative maintenance on the machine.

The treatment room is freezing, and drafty. No one knows why.

But on Monday, I was waiting with a woman who was having her last treatment. They gave her a plaque, and a round of applause. And another woman I was waiting with had really nice (short) hair, which we talked about. She says that once it starts growing, it grows in fast!

Attitude of Gratitude

Yep, still grateful.

I spent this afternoon and evening at my brother- and sister-in-law's, eating the traditional eats, talking about the traditional things, and generally enjoying Family. (The Wonder Family were bravely having his family at their house, which involves catering to a whole host of food peculiarities, from real allergies to just quirks.)

There were a few awkward moments. Some of the "kids" now have kids of their own who are old enough to see what's going on and ask questions. So while the adults mostly did fine (we will leave aside the person who said of my headscarf/shawl combo, "You look like a Muslim in that thing!"), some of the children were curious, and even frightened. But anyway, in general, things were cool. And I was very grateful to be there and to be able to be there.

I spent some time tonight reading over this journal. And really, if you have to have cancer, I could not be having a better experience as far as treatment goes. I still think the System at D-F is broken, and I would like to be part of fixing it. But that's for later.

For now, grateful.

Time to think

Today was the first radiation treatment. My cough is a little better, which was good, because first the therapists (minions of the Machine is more like it) had to do a bunch of studies. The Machine is quite similar to a 2.5-axis milling machine, only instead of drills and burrs it has a gigantic drum (the radiation generator) and a capture plate for the digital images. Blood-red, glowing crosses on walls and ceiling generate overlapping lines of laser light by which the initial orientation of the Machine is plotted, and the two parts describe independent, angled orbits around the patient, who is lying on a platform that itself can be raised or lowered or moved back and forth as necessary.

(See? 2.5 axes. All that CAD/CAM has come in handy!)

The position of the patient on the (narrow) platform begins as one of mild discomfort, with the arm next to the affected breast in a support beside one's ear, and the hand gripping a shaped handle over one's head. Since I was having studies done, I had to hold this position for about 25 minutes. By the end of this time, the discomfort was no longer slight.

The only way to deal with things of this nature is to abstract one's mind and think of other things. Fortunately, I can do that. And the other sessions sre only 10 minutes, so I may not even get past the light haze of beginning meditation.

They give you heated blankets if you ask, too. Mmmm... blankets.

So much for energy...

Today I got out of bed at a reasonably early hour, performed various morning rituals (pills, eyedrops, more pills, read paper while waiting for pills to take effect, make and eat breakfast with (you guessed it) more pills, shower, dress) and made my way to church for the first time in six weeks. I enjoyed the service thoroughly, saw a bunch of friends and took care of some churchly business. Then I gave a friend a ride home and did an errand.

And then I collapsed. I slept for two-plus hours, and would have slept longer except that the phone rang. Yard work will have to wait till tomorrow.

But I did make a delicious soup for supper -- cream of roasted butternut squash soup, garnished with toasted pepitas and blue cheese. We hogged the entire pot, about six cups. I am particularly pleased because I made it up myself -- not squash soup, but the garnishes. \I did the pureeing with my handy stick blender, and there wasn't all that much cream used. Still, I should probably switch to yogurt.

Tats. I gots um.

Today was the first consult with the radiological oncologist. All the nurses and such really admired Dr. Cavillo's work. The radiology technician even said that if I hadn't pointed out the scar to her, she would have had trouble finding it.

And as it happens, they had time to do all the mapping studies today, so I stayed an extra hour and got scanned and tattooed. Since I am large and floppy, they ended up making bubble-wrap supports for my breast. These are kept for use during the actual treatments. They also had to strap me up here and there. Such an unglamorous use of boob tape -- these Hollywood starlets that rely on the stuff to prevent wardrobe malfunctions don't know what they're missing. (And I hope none of them ever have to find out.)

The tats are tiny. What they do is make an x-marks-the-spot with a Sharpie, drop some ink on the cross-hairs, and prick the crossing-point with a needle. It's got all the glamour of a zit. I have one at what might be called center-left, totally hidden by les balcon, and another just below my armpit.

The bummer is NO perfumed skin products, NO anti-perspirants, NO deoderant, and NO powder. Cornstarch, Tom's of Maine Unscented, and goop they'll give me is it, for the duration. And LUSH has a whole host of products I love that are being discontinued, not to mention all the scented soaps and ungents I use daily. But ... it's in passing. All of this is in passing.

And in better news, I have Five O'Clock Shadow Head!

(And apparently I still don't look old enough to be the mother of a 31-year-old.)

Better, but Strange Things Are Happening

My mouth and other spots are doing much better, which is a great relief. However, the peeling skin and other nifty manifestations on my hands and feet are still peaking. I bought a cucumber/shea butter ungent today because I was told not to use any lotion with alcohol in it, and virtually every lotion I've found contains cetyl alcohol. This goop does not, and it feels most refreshing. Time will tell if it helps.

Monday will be the day I really start to leave the shadow of chemo behind, and Tuesday I see the radiological oncologist. More on this as it transpires.

A better day / Boosting the signal

Better day today -- stronger, less mouth pain, less distress in general. I even did some work.

The skin is peeling off my fingertips and feet. I was warned this was a possible consequence of chemo, so I'm not worried, but it's painful and has made these appendages unusually sensitive to temperature and pressure. Usually, I can plunge my hands into nearly boiling water without a qualm, due to decades of the same. Right now, I am qualming away.

And speaking of qualms and even more disturbing sensations, I have linked to a story over in my other blog that has me channeling my Civil Rights Warrior mother. Please boost the signal, if you feel so inclined.

Thank God for Cream of Wheat

I do, in fact, have opportunistic infections in my mouth and elsewhere. I also now have two mouthwashes and a stronger antifungal powder. They aren't helping much yet, and it's too painful to eat anything that's not utterly soft. A piece of soft roll requires to be soaked in water before I can eat it. See heading for other sources of nutrition.

It is to be hoped that this will abate post haste. Also, boo on no one telling me that I have to be extra-careful rinsing my mouth after using my Advair inhaler, as steroids make this whole thing worse.

What yeast can do to the human body makes me glad I'm not vegan. I plan to kill lots of them (or have them killed on my behalf) and eat them. In the future, when it doesn't hurt so much.

And... They Get Me Again.

About two weeks ago, I got a call from the administrative assistant in the medical oncologist's office. "Your appointment is all set with the radiologist. A week before, just call this number, and the Radiology Library will send you your films. Bring them to your appointment."

So today I called. A rushed voice said, "Radiology!" I explained my request. "Well! You need to send me a letter."

Now, this does make sense. Can't have voices on the phone demanding confidential records. But with a week to get this done? Not good.

"That's not what I was told, and I only have a week to get this done." Was my voice rising? Yes.

"Someone's given you the wrong information." At which point I became inarticulate and hung up.

I have since spoken to the medicaal onc's office again, as well as to Patient and Family Services and Risk Management, and found out the following:

* The Radiology Library person should have offered to email me a request form. It's the job of. Each department to explain their procedures to patients; this was not done well in my case.
* Even with this form, I would still need to contact the surgeon's office to get my "external" films -- the ones I went through Hell to get in July.

In other news, the reason my medication info took so long to make it into the LMR is that my first appointment ar D-F was a consultation, and since many patients only come for that, they wait for the second appointment. In my case, this was with the surgeon, who should have signed something then to start the process, but did not. This is a well known break in the system and will be reviewed at the next QC meeting.

And finally, no one knows who the pharmacist was that I met with, or where or what the list of meds was that she had.

My internal films are being sent to me, and I have arranged to get my external films myself. And I am exhausted.

Tachycardia

I've probably pushed myself a bit much the past two days, trying to get errands done before the storm (and before Halloween). The rapid heart-rate stuff is really noticeable. Today, we came home from grocery shopping (not easy) and I walked down to the garage to fetch the second snow-shovel, and by the time I got back up to the car the only sound I could hear was the swish and thump of my heart.

But I slept for about two hours this afternoon, which seems to have helped. The heartbeat's down to a dull roar.

Still, going to take it a bit easier tomorrow, in the hope that I can even get some work in on Monday.

One... more... climb...

I suspect that the climb out of the Chemo Hole may take longer this time, only because it's Treatment Four and Treatment Three was rather devastating in that regard. But I am really starting to look forward -- everything from plans to watch most of the Breeder's Cup races to plans for an anniversary Dinner Out, to plans for Thanksgiving and Christmas and future adventures.

Future adventures. Anniversaries. How wonderful.

And, perhaps, yet more meaning to come. I hope to stay connected to the data management people at D-F in some way, if they want the sort of input I can provide. Going to work on seeing if that's possible next week.

The Last Chemo Train Has Left the Station

Quite groggy from the last chemo, but I just wanted to document that it was nearly as smooth as silk. After listening to my tale of woe from the last time, the lab nurse spent a good 15 minutes finding just the right vein. It was on the side of my wrist, right over a nerve, which made it uncomfortable once the infusion began, but a couple of warm compresses opened everything nicely.

And I had been having a very rapid heartrate, which concerned me -- as I thought, it's due to chemo-induced anemia, which is forcing my heart to beat faster to keep me oxygenated. Kind of like being at high altitude, in a way.

And it seems that my immune system should be back to life in about a month! Just in time to kiss babies at Thanksgiving.

Infusion nurse: "I mean this in the nicest possible way -- I hope I never see you again!"

Arigato Gazimashta to you, too!

Tomorrow, and tomorrow, and tomorrow...

But I have much more to be thankful for than that rather hung-up Danish prince.

Tomorrow is the Last of the Chemo. I am really not fully recovered from the last blast -- still tiring much to easily, and enduring an irruption of mouth sores, rather late. The pain woke me several times last night. Consequently, I skipped church. And the Wonder Family were going to come over for dinner and to make applesauce, but Little Wonder is coming down with a cold; so I forwent the pleasure of their company.

Ah well, subs are a fine meal if you get enough vegetables with them.

VICTORY! (Or something very close to it!)

I spent time today talking with the Risk Manager at Dana-Farber, and then with the Patient and Family Services manager, and then with her and the leader of the IT group for new patient intake.

Turns out the form I was complaining about (ancient word document, formatted for completion on type-writer or by hand, no secure way to send it back, no way to capture its data digitally) is specific to the breast cancer group and maybe a few more. Nonetheless, THEY ARE GOING TO REVIEW THE FORM FOR TRANSFER INTO AN ON-LINE FORMAT and also review the question of how data gets back to them and into The System.

They listened to one patient, and are (possibly) changing the way every breast cancer patient who chooses Dana-Farber experiences the intake process.

I am hugely impressed, and so happy I could dance.

(They are still going to address the medication reconciliation issues. That's apparently a manual process, but once the data is in, it should show up everywhere. But I feel a certain level of trust now that they will track the issue I had to its source.)

Boobeucracy, I will beat you or change you!

So, yesterday I found out that an old work friend died last week of a very rapid form of cancer. I couldn't go to his wake or funeral because of The Immune Issues. Meh. I did have a really good conversation with another old friend in consequence, and am resolved not to wait until anyone else dies before repeating that experience.

And today comes news that one of my cousins was recently diagnosed with breast cancer. Her surgery is Thursday. She reads this blog (*waves*), so send good thoughts Martha's way! Her prognosis is excellent, as is mine, and I am pushing through the discomfort that these two bits of news produced.

Survivor's guilt? Quite real. Silly, but real.

Interestingly, though my cousin and I have the same grandparents on one side, her diagnosis is very different from mine. Fast- vs. slow-growing, estrogen-sensitive vs. "triple negative", etc. Quite different genetics at work.

And the computer here is Not Happy. It failed to start, ran Start-up Recovery, and now I am having to scan everything and reinstall more than 150 MB of updates.  Yes, this is a First World problem.

Climbing back out of the chemo hole

Yesterday I managed to do some cleaning and make a decent dinner, and that was it.

Today I've done laundry, cooked, cleaned, knitted, read some law to Bravest, and done a few errands outside of the house. Plus, I deliberately parked further away from where we were going than I needed to, in order to walk further.

My legs were quivering with exhaustion by the time we got home, but nothing that a few hours in the reclining chair didn't cure. Too bad I have to wrestle with the larger of our two cats over Chair Control. He always loses, but he's persistent, which makes sleeping an interesting proposition.

(The cat in question, James Boswell, is just smart enough to know he's not human and to be annoyed about it. Our other cat, McLeod, likes being a cat just fine, and is consequently much easier to get along with. Naturally, I love Boswell best, and spend much time being nice to Cloudy to make up for my poor taste.)

Third day == heavy day

It's pretty clear now that the third day after chemo is the one where everything crashes for me. It's the day that makes you realize you really have been poisoned. There's no way to "power through" the weariness, as I can do on most other days.

Thank goodness, the Wonder Family did our grocery shopping with impeccable attention to the list I sent them yesterday, when I still had a functional brain. The ice cream got into the freezer right away, but it took me several hours to get the rest of it stowed.

I filed a Patient Safety Incident on-line form with Dana-Farber, and a legal eagle friend in NYC has advised at least discussing this situation with a similar person up here. Just in case. Spouse and I are agreed that we certainly do not want money from them; we just want to know with quite a great deal of specificity how this problem will be corrected.

Actually, what I really want is to sit down with someone in their IT department and find out why they have a perfectly lovely on-line form for safety incidents and are still using a form they expect patients to print out and fill up by hand for new patient info. It makes no sense, no it doesn't.

Till We Have Faces (Warning, this one is religious)

Today I was mistaken for a man. A man knitting a tiny little purple-and-pink child's hat.

I was in the waiting-room of my doctor's office, waiting to see the nurse practitioner who administers my Neulasta shot. The room was crowded with folks waiting for flu shots. One of the ladies sitting by my had Down's Syndrome, and as such people often are, she was quite friendly. We got to talking about this and that, and then an older, rather pleasant-seeming gentleman sat down across from me, and said (but entirely without offensiveness), "Well that's great, a man who knits!"

He was so pleased, I was sorry to disabuse him.

And you know, I really was not offended. Because I am post-menopausal, my face has started to lose its female specificity, and is now, as Ursula K. LeGuin puts it in Left Hand of Darkness a human face, neither male nor female. And with my bulk and no hair, I really could be either, until you see me smile.

And I remember a tiny little Baptist church I visited once in Georgia because it was the closest church to my temporary home. I was the youngest person there by far, and I never went back -- it was one of those places where men and women pray separately because otherwise a man might end up being instructed by a woman's prayer, and that would Never Do. But I clearly remember all the very elderly women, and their deeply kind faces that, other than their hair and earrings, were neither male nor female -- just the face of people who have loved Christ and lived Christ all their lives, to the best of their knowledge.

My knowledge of Christ is very different from that which shaped those lives, but I hope that as I age, I show His face in mine that clearly. And since in Christ there is neither male nor female, why should someone's mistake about which I am matter? And besides, how cool would it be to be a man not embarassed to knit a tiny little purple-and-pink child's hat in public?

The details devil strikes again.

So today I got to meet with the lady in charge of mxing my near-death-dealing potion, and found out that three critical meds -- the ones dealing with my high blood pressure -- were not on her list. No explanation has been forthcoming as yet. I expect to expend significant energy units on this tomorrow.

And the IV was placed in my hand again, it felt better. Unfortunately, what was a great blood return at 8:50 AM was barely there at 11:30 or so, and gave up completely 2.5 syringes in. And it took three tries and an additional expert to get a workable vein going.

The problem seems to be that my veins, in two cases, just said, "Enough!" Not that veins talk. No. They act, rather decisively. The third time, the insertion was too near a place where two veins join. This really restricts the flow of blood out; the IV fluid was pouring in like mad, and the infusion nurse could feel the vein bulge when she put pressure on the line, but no return flow.

They were surprised when I wasn't angry. I'm saving angry for the medication botches.

WOW is a wonderful chemo buddy.

It's strange looking at that there hairy picture.

I'm already used to being bald -- isn't it both strange and wonderful how the mind adapts to changing circumstances? For example, I love to have my face and neck right on the pillow when I sleep, and thus was always thrusting my hair out of the way. No more of that; and I am also enjoying never reaching for the comb or hairbrush after a much, much shorter shower.

Not that I'll be sad to have hair back. But I wasn't expecting to enjoy being hairless at all, and lo, even this cloud has silver tints. And not by Clairol!

I did make it into work, and even managed a small amount of yard work this afternoon. Chemo tomorrow.

No news is no news.

Next chemo treatment is Wednesday, and I am very much enjoying having an extra day or two to feel pretty good (though tired) in. I have even eaten spicy food TWICE.

This time around, I got a sore between two teeth, and the after-effects have proved stubborn. Otherwise, all is status quo. Hair continues to fall out, blood pressure continues to be a little wonky, tiredness continues to continue. I am still trying to drink what feels like inordinate amounts of water. Food continues to taste a little bit funny.

And the Neulasta arrived right on schedule!

Tomorrow, I am going to try and go into work for a meeting. This will be a longer drive than I have tried so far, though not much longer than my weekly Whole Foods pilgrimage.

I ain't nothin' but a houn' dawg...

... sheddin' all th' time.

Today there was some serious molting, and the bare patches spread like a glacier in a new Ice Age. Also, the mouth sores, though not as bad as chemo week 1, are back in a fairly major way. I am not as unwilling to have them, though, as they are alerting me to the state of my immune system.

I've been able to work both days this week, and expect to put in about 19 hours. This will keep me in yarn quite nicely!

Hare today, goon tomorrow.

Yes, that's the punchline from the famous "Little Rabbit Foo-Foo" joke, boldly appropriated by me. Currently:

• Most of the hair is gone, though there's enough left to make the truly bare patches look ...disturbing.
• I have a new appreciation as to why men with short / no hair wear hats. I am wearing one well-nigh constantly.
• On the other hand, when I need some radiational cooling, it's available at the drop of a hat!
• There may not be a whole lot in my head, but there's certainly enough space for whatever's there -- in fact, if I didn't have a pronounced double chin, I'd look quite top-heavy.
• Our smaller kitty has decided that the top of my head is very nice to lean against.

Today was a quiet day, though I did manage to cook a real dinner (sauted chicken breasts in a shallot pan sauce with baked potatoes and broccoli.) And tomorrow, I'm going to try and do some work.

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?

And Yet More Billing

So it turns out that the anesthesia department at B&W uses a single code to stand for several different surgeries, relying on the diagnostic code to tell the insurer what is going on.

And telling the consumer/patient NOTHING AT ALL.

I mean, when you go to a fancy restaurant and pay, oh, $35 for truffled goose liver or sake-soaked squid or something, would you be happy if your check showed thaat you had a grilled cheese sandwich with a code to tell your credit card company what you really had?

Some sort of action may be in order.

Someone gets to have a bad day... not me, though!

The anesthesia bill was clearly coded wrong. The very nice customer service rep I spoke with says they will re-code it, resubmit it to the insurer, return the payment the insurer already made, and "generate a new responsibility" for me.

Query: the CSR was able to pull up my diagnosis on the computer and see that it didn't match the type of surgery for which I was billed. Why couldn't any other parts of The System do that? It shouldn't take a programming genius to restrict the list of valid codes based on the diagnostic code.

Billing.

And wouldn't you know, Bravest (the spouse) and I have both run into a bad streak of billing errors?

Bravest got told he had to pay a huge sum for a visit to the dermatologist.  Turns out, someone had written the wrong code and thought he had maxed out on his yearly visits to a chiropractor. Neither of us has a chiropractor. (The phrase "manipulative visits" was a clue.)

I had a mysterious bill from Brigham and Women's with a previous balance of Quite A Lot of Money. I had never received a bill for that amount. Turns out, it was for services on August 3rd, the pre-op visit, which is the day I updated my billing and insurance information with them -- but the change didn't move as fast through The System as the bill did, so they sent that one to a place I haven't lived in more than 15 years, and billed the wrong insurance company. (I had to tell the lady on the phone to stop interrupting me and stop calling me "hon", too.)

And then I went to pay the anesthesia bill today -- same hospital, different department -- and it says I had shoulder surgery. Someone entered the wrong code. So there's another energy-draining phone call.

While we're on the subject, I fully expect to receive at least eight separate bills from Brigham & Women's, and probably more, to whit:

1. Lab work.
2. Pathology.
3. Radiology.
4. Nuclear medicine (yes, they are separate.)
5. Surgery.
6. Anesthesia.
7. Postoperative care.
8. Any doctor who so much as glanced in my direction.

This expectation is based on our experience with Bravest's various hospitalizations and surgeries. The separate billing (to separate addresses, with separate numbers to call if you have questions) is an historical artifact dating from the days when radiologists, anesthetists, and surgeons were all considered to be in separate practices so their payments had to be managed in separate piles of money. Now, it's just because it's too damned expensive to rationalize the computer systems.

But God protect the poor people who aren't technically sophisticated and don't understand, for instance, the difference between an EOB and a bill. It's hellishly confusing for me and my husband, and we are reasonably astute consumers of medicine.

And then there are the ER bills...

Anxiety anxiety.

So compazine is an anti-psychotic. I'm not too worried about it, as it's anti-nausea propreties are also well known. It makes you hella sleepy, but that's all to the good, really.

No, the one I'm worried about, ironically, is the ativan. Also know as lorazepam, it doesn't really do anything for nausea. It makes you forget that you were nauseated,or that you were worries about it.

I have a bad history with such drugs. Back when I was young, poor, and a new mommy, a doctor gave me a similar drug to treat back spasms. (And probably also because he thought I was anxious. I was, but for entirely justifiable reasons. We will save the rant about not drugging people who are responding normally to bad situations for another time.)

It took two days on Valium for me to start talking about suicide, a development that surprised even me. It is an experience I'd very much like to not repeat, and thinking abut it is making me feel anxious and slightly nauseated.

Which is funny, in a sick way. I plan to talk to the doctors about it.

(Please note that I may be nauseated, but I hope never to be nauseous. If I am, pipe up and say something. Maybe I can take a breath mint or hide under the blankets or something.)

And now for some Science!

Today we went in to see the surgeon's Nurse Practitioner. We were also supposed to see the surgeon, but our 11:30 AM appointment didn't happen until 1:10 PM, by which time the surgeon was already slicing and dicing over at the hospital.

The NP did check out the embroidery, and is very pleased with how fast I'm healing. She then reviewed the pathology report with me in detail, and gave me my very own copy. It's a little weird reading about the various shavings and slicing, but whatever.

Did you know that the scientific name for the type of cancer I had is the same as the name for a pimple? Neither did I! That name is comedo. On your face, a blackhead is an "open comedo" and a whitehead is a "closed comedo". In the breast, a comedo is a center of dead cells surrounded by a hungrily expanding and wildly proliferating set of cancerous cells. If they are at the surface, comedo cancers can be "squeezed". Yes, just like your momma told you not to do. (It doesn't make them go away, though.)

They are also a lot more aggressive than other sorts of cancers. Mine was very, very different from normal breast tissue, and was really growing very fast (lots of nuclei). So glad that Lump is gone!

The NP said not to worry about the little bits in the lymph vessels. If there's anything at all (and chances are good that there isn't) left behind by the surgery, the radiation and chemo will clear it. But it makes it even more clear as to why I need all this heavy-duty poison medicine.

(And they not only didn't have my medication list right, they didn't have the new medications the oncologist ordered on the list. I got a bit upset. The NP had the right list, thank goodness! and promised to make sure whateveritis is fixed before the 12th. If they don't get it right, I will refuse treatment, because I have to be sure that the people mixing the chemo know what else I'm taking. In fact, I may call the oncologist's office the week prior, just to be sure.)

Now then:

• The chemo is AC (Adriamycin/Cytoxin). The A keeps cells from making or repairing DNA. It really is a poison; fortunately, since cancer cells are madly dividing, it hits them harder than the more leisurely normal cells. The C keeps cancer cells from replicating. So, they can't reproduce and they can't repair themselves and they die. Hopefully, before anything else important dies, like my heart muscle or all my T cells.
• I will be getting Neulasta the day after surgery. This will help my blood recover its ability to fight infection sooner, so I can go through the speeded-up regimen.
• The backbone of the anti-nausea regimen is three drugs: emend, aloxi, and decadron, mostly administered with the chemo. I will also have compazine and ativan as needed, and Zofran if the nausea lasts more than three days. I have been instructed to take an ativan before coming in for my first treatment.

(This last bullet is mostly for my Uncle Bob, an expert on nausea in all its aspects, who instructed me to ask the doctor for medication to take before having the first treatment. Seems that if you take an anti-nausea medication before treatment, thus keeping you from having anticipatory nausea, you may not have much trouble from nausea at all.)

Today's extended wait was enlivened by a lady who moved from commenting on my knitting to a broad-ranging conversation that included a dig at immigrants! I jumped on that one tout de suite, but in a nice way, bringing in my great-grandparents, grandparents, and parents. She was relieved, I think, that I left her a graceful way to backtrack. Normally, I would be less polite, but the lady had to have a surprise mastectomy just a couple of weeks ago, so why point out that her doctor and mine rejoices in the last name of "Zabrinski-Calvillo"?

A long day, and a lot to digest (doing the math)

We met with the oncologist today. It was a long session, and some of it I need my notes for. For example, she obligingly outlined the whole anti-nausea regimen, which I cannot remember off the top of my weary head.

But here's the basics:

• The tumor was 1.1 cm. The margins were clear, though one was kind of close, due to the position of the tumor at the back of the breast.
• The two sentinal lymph nodes were clear.
• HOWEVER, there was some sign of Lymphatic Vessel Carcinoma, meaning that cancer cells had started to leave the tumor and were moving into the lymph system within the breast.

I am kind of freaked out a bit by the last item, but it didn't seem to concern the oncologist at all. So I am tamping down on the freaking, or trying to.

I was then presented with a number of choices, which I am not going to discuss in detail. Instead I will outline what I'm going to do. Which is:

1. Start chemo on September 12th, and have chemo every other week for four weeks.
2. Have a shot of a blood-stimulating drug the day after chemo that will speed up my recovery.

The more usual course would be to have the chemo every three weeks, but the oncologist thinks that 1) I am a fine candidate for this faster method, and 2) based on the usual schedule for radiation following chemo, I could be all done by early January. Whoo-hoo!

Now, the math. I am putting this here because several people have asked me, "Do you HAVE to do chemo/radiation?

The answer is yes, and here's why:

• If I do nothing, the chance that the cancer will metastesize somewhere else in my body, like my brain, is about 15%. Chemo will half that, down to 7.5%. Or, to put it another way, it will increase my chances of NOT having metasteses from 85% to 92.5%.
• If I do nothing, the chance of cancer recurring in the same breast is about 25%. Having radiation drops this to 10%. Or, a 90% chance of not needing a mastectomy in the future.

I hope that's clear to all and sundry, including me.

There's a bunch of logistics I have to clear, including making sure I can get the blood-boosting drug. And this fast chemo regimen is really going to wipe me out, energy-wise. I may just crawl into my hole and not come out for two months.

Oh, and it seems that the loss of hair is VERY predictable. If I start chemo on 9/12, my hair will fall out on 9/30.

More on the drug names and such in our next.

Oh, and there was a definite Boob Wars moment. As we were ushered into the exam room, our usherette handed my a clipboard with a "List of your medications, please confirm them," on it. IT WAS COMPLETELY WRONG. All that was there were the two post-surgery prescriptions (neither of which I need any more) and an asthma inhaler as prescribed by the folks in the ER two weeks ago.

I have given them the extensive list of my medications three times now. And I sat there and watched the pre-op nurse type them in, from a printout given to me directly by my PCP.

I'm feeling pretty mellow towards Dana-Farber at the moment, but if this happens again  there will be hell to pay. Or maybe just heck, if I'm feeling merciful.

And another waiting cycle ensues

I have an appointment with the oncologist Monday to discuss when to start chemo, what sort to use, and what the schedule will be. And I have an appointment Tuesday with the surgeon so she can admire her embroidery. :)

Also, a dentist appointment the following Monday so I can get one filling taken care of and go into chemo without any mouth issues.

Church today was rather strange. I got into a long discussion with a woman whose niece (only 32!) is dealing with really bad breast cancer, much worse than what's happening to me. She (the niece) apparently has a rare anomaly on the BRCA1 gene, and my even-Christian (Blessed Julian of Norwich's name for fellow-believers) was trying to extrapolate from my experience to her niece's. Despite my repeated warnings. She didn't want to question her sister (the young lady's mother), who is having a very difficult time with things, or her niece (who sounds, from her description, as though she wouldn't mind at all, but I forebore to say so because it's not my family). So, she asked me. This got us into the link between various cancers and ethnic background, and why X was happening to me while Y was happening to her niece.

It's really amazing how individualized cancer therapy has gotten.

Other than that, there's only a lot of trying to live while waiting to report. I will let y'all know as soon as I can about what the chemo schedule looks like.

In return, may I ask one favor? All sorts of chemo have side effects, and I'm sure my doctors will tell me what I need to know about them. Please, therefore, do not post links for me to read about this type or that type. I am staying away from the Internet as much as I can while dealing with this thing, because I am NOT a scientist or a doctor, and I DON'T have a way to filter claims and counter-claims, and a lot of the stuff out there is just scary and depressing. I find I scare rather easily (see previous lymphadema episode), so it's best to just try and understand what the docs are telling me.

And just to remind me (and you) that it's not all about me...

While I'm getting all this good news and merrily preparing for chemo, a good friend -- someone who, with his wife, opened his home to me on a very bad weekend, who witnessed my son's baptism, and who was a leader in our church's moving to acceptance of GLBT people, is dying of pancreatic cancer. This, after more than 10 years of battling a progressive brain disease similar (but not the same as) Alzheimer's, which hit him at a very young age.

The end for him is very close.

Those of you who do the praying thing, please pray for John, Peggi, and their children Morgan and Colby.

Bless the Lord, oh my soul,

And forget not all of his benefits.

The surgeon called. The margins are clean, the signal nodes were clear; I am done with surgery. Any treatment after this is on the off-chance that a cell or two slipped by, and to teach that area of my breast to behave itself and not go wildly multiplying.

Time from biopsy to post-surgical phone call -- two months and one day.

The scars are about two inches long apiece, and look like this:  /
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And if I was living in another time or another place, I might not even know yet that I had cancer.

Praise Him with the sounding cymbals!

Things They (Whoever They Are) Never Tell You

Here's a list of things I wish any one of my doctors had thought to tell me:

1. You will get at least two free bras that will be more comfortable than anything you will find in a store, because they are designed for support rather than support and display. (Not knowing this cost me $110, and means I have one marginally comfortable and two not-very-comfortable bras, in addition to the freebies.)
2. You should go to the dentist and get any fillings taken care of ASAP, as you shouldn't start chemo with any sort of infection in your mouth. (Fortunately, we are compliant consumers of dental health services, meaning that I have clean teeth and an appointment for an overlay filling in two weeks. But my dental hygienist told me this, not the oncologist.)

I plan to return to this list and update it from time to time. Then, when all is over, I will make sure at least one of my doctors gets it.

Time divides...

Did you ever notice that when something big is coming up in your life, time seems to divide into the known Before and the unknown After? A priest friend who reads this blog says that in this sort of circumstance she gets "very eschatological". And cleans!

I have washed, dried, folded, and put away every stitch of clothing I own, except for what I'm wearing now and tomorrow. If I'm destined never to return, at least my undies are clean.

(Note: I thought I had published this one on 8/8, but apparently not.)

Breathless

Yesterday, I started having trouble breathing.

It wasn't bad, at first. Just a feeling like a deep breath was needed more and more often. But it got worse as the day went on, and started to feel as though ecven a deep breath somehow wasn't getting me any air.

So, I used my "rescue" inhaler, and that helped a bit. And I took a nap, and that seemed to help as well.

And then I started making a cold soup for supper, and things got worse and worse. So, I used the inhaler again (this was most unusual, since I might normally use the thing once every six months, if that). And... no relief.

So, I got out the post-op instructions, and they said to call 911 if I experienced trouble breathing.

Which, after trying to contact the surgeon or her surrogate for forty minutes, to no avail, we eventually did, and I got my first ride in an ambulance! (The oxygen was a big help.)

My sister joined us at the Brigham & Women's emergency room, and blood was drawn (to make sure my kidney functions were OK), and then I had a chest XRAY and a CT scan. Results: No blood clot in the lungs, thank goodness; probably an asthma attack. Plus, I'm a bit low on potassium.

Which made me feel like an ass, and means that we're going to have to pay the whole bill for the ambulance ride.

However, when we walked in the door after five hours(major thanks again to my sister, who joined us in the ER and to her husband who brought us home), I felt my chest tighten again. So the hunt was on for the triggering agent.

Further conclusion: Any of y'all feel inclined to send me flowers, please make sure they do not include lilies. Apparently, even the ones that are nigh-scentless can send me into crisis mode, if enough of them are open.

Today, I'm fine. Doing the grocery shopping kind of wore me out, but only a little more than usual.

Oh, and the new haircut isn't half bad. I look even more as though I bat for the home team, as it were, but people have been making that assumption about me for years now, and I'm starting to consider it an honor.

An image I won't forget.

When they wheeled me into the OR I naturally took a look around. There were people burbling about everywhere, two clocks on the wall(one with the time, one to time the surgery), a lot of impressive white machinery around the very narrow operating table, and a large black screen on the wall.

The anesthesiologist began running through the Checklist (this is Atul Gwande's hospital and they use it rigorously), and I replied "That is correct!" to my name, birthdate, and procedure description. Then the surgeon breezed up and held a geiger-counter to my left armpit, and I heard my signal lymph node signalling. "Good," she said, "No blue dye needed."

And then she swept over to the large black screen, waved her hand (no unsanitary buttons here!) and the screen came alive with various images of my breast.

And she froze before them in absolute concentration.

It was tremendously reassuring to have that be the last thing I really saw other than the oxygen mask.

Recovery

I'm doing OK. Things hurt, and my neck is stiff from sleeping in a position I'm not used to. There's no fever, and the sites don't look too red or feel hot (some spectacular bruising, though). But I am moving around quite well, and starting to go a little stir-crazy, which is a good sign. Tomorrow I will put on ordinary clothes (I've been lounging around in mumus) and we will take a short drive and do some errands, just to gauge how tired I get.

Recovery also being a time for reflection, I should -- in the interest of honest reporting, as Bravest is wont to say -- relate that I know that a lot of my tears and flapdoodle before the surgery was due to the pressure of knowing that I have cancer. Even with the tumor out, I will still need a lot of patience and support from my friends and family to get through the next four to six months.

But I am glad to be feeling that mentally, at least, I am back from the surgery. It took about 36 hours for the last of the "logy" feeling to wear away.

Next up: haircut! I am having my hairdresser cut most of my hair off on Saturday, so there won't be so much of it to clog up the shower once the chemo starts in September.

Emergency keyboard is enabled!

So, I have absolutely NO griping to do about any aspect of the whole experience. We got there on time, and everyone in the whole hospital that I encountered did exactly what they were supposed to do. I had a lot of nausea from the general anesthesia and the anti-nausea drug they gave me sent me right to sleep again, so we were later getting back than I'd thought we'd be. but that was the only thing that could be described as a hitch.

I give the credit to 1) a very good hospital/surgeon/staff, and 2) to prayer. Because a lot of things could have gone wrong, but none of them did.

Also, my surgeon is a BABE. She showed up at the pre-op in a white linen suit, heels, a green necklace, a sparkly pin, and her long blonde hair in a carefully slightly untidy bun. Everyone there (save Bravest) let out an admiring sigh. Then she changed into scrubs, and was back in her full vestments for post-op. Scary!

I have some pain, but it's really not so bad. Tylenol and some ice packs have been all I needed during the day.

We should hear in a about ten days regarding the findings. Then I will know if I need more surgery, or if I can move on to chemo.

Sugery today.

The computer keyboard is dead, so this is from my teeny Droid keyboard. All is welll, and e'll hve results in a week or two.

No more deep thoughts today.

A reassuring note

Today was a much better day -- full of swimming in the broad Atlantic, lolling on the beach, and eating yummy things with pleasant people.

I love ocean swimming, particularly in surf. There's some point in being fat when you're in the water; you don't get cold as easily, and you're marvelously buoyant. I spent nearly an hour without touching my feet to the bottom, and emerged feeling just grand.

I'm afraid the Boobeaucracy won this one.

As I noted in my last, the people at the Dana-Farber Friend's Place Shop have the machine that measures limb volume. They also provide massage therapy for lymphedema, special exercise classes for those seeking to avoid or alleviate lymphedema, and compression garments for those with lymphedema who want to keep swelling under control.

Please note that they charge for all of this. Some of it is covered by insurance; some of it is on the patient's dime.

I buzzed in there to get measured this morning, per the prescription from the nurse at the Brigham & Women's Comprehensive Brest Health Center. Who had, of course, told me, "Call here if you have any questions." (I think you can see where part of this is going.)

While I was being measured, I naturally asked a couple of questions about how to avoid lymphedema. After all, it's fairly horrible, my chances of getting it after lymph node removal are enhanced due to being obese, and who wouldn't want to avoid something like that?

• Avoid repetitive strain, like raking leaves or swimming or kneading bread.
• Avoid long periods of gripping a steering wheel. No long car trips! (Unanwered: what is a long car trip?)
• Avoid hoisting myself up the (steep) staircase at home by holding on to the handrail. (This is impossible for me.) Alternatively, stop every three steps (that's four times in one ascent), release the stair rail, and wave my arm around over my head.
• Don't allow anyone to take blood pressures, draw blood, or administer injections in my left arm, and wear a medic alert bracelet with this information on it. (I can't wear bracelets; they cause pain all up and down my arms and a feeling like my hand has been chopped off.)
• Stop sleeping on my left side (a habit of more than 30 years standing).
• Wear a compression sleeve when I fly. (hot, uncomfortable, very weird-looking)
• Wear gloves when doing anything that could scratch my hands or arms, like planting plants or weeding. (I cannot do this; I have to feel the dirt)
• Don't allow manicurists to cut my cuticles.
• Never let my arm get tired.
• Do a set of exercises daily (I may do this one).
• For the rest of my life.

Well. No one said ANYTHING about lifelong limitations on all sorts of activities when lymphedema was discussed during the consent form signings and other events of Wednesday. All Bravest or I heard was, ">5% chance with signal lymph node biopsy, rising to about 20% in your case if we have to do a full lymph node dissection."

Also, this one. "Most people buy a compression sleeve and wear it when they travel, just in case."

And the more I thought about this, the more I thought about it. I thought about it as I bought a few scarves and said good-bye. I thought about it when I was visiting the grandbaby (who says, "Thank you, Bubbe!" as if saying thank-you was the most fun thing in the world), and I thought about it when I walked in the house, put down my stuff, and burst into tears. And even after I controlled that outburst, the tears kept coming; while I was fixing lunch, while I was cleaning up after lunch, while I was making a potato salad to bring "down the beach" tomorrow. I am planning on swimming in the ocean tomorrow, one of my top ten favorite things.

"Avoid swimming."

When I couldn't stand it any more, I called the Comprehensive Breast Health Center. Who comprehensively told me that since I was a patient of a Dana-Farber doctor, I would have to call my doctor at Dana-Farber.

Which I did, and managed to explain, between sobs, that I had heard and read all this stuff and it was freaking me out and I needed some real information about my chances of getting this thing.

The office nurse called me back, and said that people who are only having signal node biopsies never have to worry about all that stuff. She had even called down to the Friend's Center and asked them what the hell they'd told me. As far as travel goes, the business about needed a compression sleeve turns out to be based on older research, disproven by more recent work with larger populations. (Please note that the person selling the sleeves didn't appear to know this.) I can drive as much as I want to. While they wouldn't recommend me going out to rake leaves for six hours with no previous exercise for months, I can most assuredly rake leaves and swim. And anyway, IF I feel any swelling or tightness or have any spongy dimpling of the arm, they will send me to PT, where my remaining nodes will be manipulated until they drain properly.

I'm still not exactly settled in my mind. The prospect of lymphedema is very frightening to me, and so is having to live a life of constant dread and limitation. When I got off the phone, even though I was relieved, I wept for about five minutes, out of sheer grief that this is happening to me. But I am really glad I checked with the doctor's office, instead of rushing out to buy things and sign up for things I may never need.

Bravest was, of course, distressed by my distress. He has had experiences around getting used to limitations (losing his one remaining eye that had sight when he was 13) that put anything I may go through to shame, which I try to remember before I inflict my vapors on him. And he knows that in all this, no matter how much a doctor may know, the practice of medicine is still practice, not certainty, and opinions, no matter how well-founded, are still opinions. He's pleased with me for calling the doctor's office and getting more complete information, instead of just sitting and sobbing.

But I'm afraid I have to score this one as a win for the Boobeaucracy. I let my peace of mind be disturbed by someone who, under the guise of being a "friend," was actually trying to sell me something.

Medical Time

Today (yesterday, really) I had appointments at 9:30 and 10:30 for pre-operative stuffs. All the morning things were done with expedition, we left the house with 50 minutes to make it to Brigham & Women's, and were at the first office we needed to visit with five minutes to spare.

Whereupon we entered Medical Time.

In Medical Time, all times are later. Since I am trying to be efficient and effective, I had lots of documents ready to hand. This disconcerted everyone we encountered. We actually made it from the consent form review over to the pre-operative center with 20 minutes to spare, which was good, as it turns out the hospital's information about me was 20+ years old. So I went over to Registration and fixed that, which meant I was right on time.

Then we waited half an hour.

I then handed the nurse practitioner my medical history, my pre-surgery clearance report from my primary care (with all the meds on it), my Healthcare Proxy, and the consent form from my first visit.

Turns out the EKG was bad, so they had to redo it. But! In a true triumph of efficiency, the pre-operative center outfits their consulting rooms with lab chairs, and a lab tech with both an EKG machine and a basket of blood-drawing supplies roams the halls. Everything is done in the room, while the nurse practitioner is continuing to work on getting all your meds into The System.

(Oh, funny moment. She asked what my blood pressure usually was, and I told her, and then said, "If you're going to take it now, could we do the urine sample first?" "Oh no, we don't need a sample, I'm so sorry, I know the form letter says we do, go right down the hall and take your first left, it's on the left." Result: BP was 116 / 64 with a pulse of 69.)

I also found out the results of my echocardiogram. I have the heart of a workhorse, surprise, surprise.

And even with me being hyper-prepared and all this efficiency, we still weren't out of there until 12:30. So, we got some lunch, and then schlepped UP one flight and through three different bridges between buildings and past two incorrect elevator banks to the correct ones, then DOWN three floors to the "Friends Center," where they offer cancer-related goods and services.

Because it turns out the support bras I bought on Saturday aren't the "approved" support bras (and why no one told me this is a subject for further inquiry), which are provided through insurance (for one bra) and free for the second because everyone wants to be nice to women with breast cancer. (I am not really happy about this. I prefer to be asked about what I need rather than have someone gratuitously assume I can't pay for a bra.) Also included was a nice canvas bag (purple, thank goodness!), a humilating pink Boston Red Sox baseball cap (you should hear what our local sports radio says about people with pink caps), and a whole bunch of very sobering literature. What to eat when you have advanced cancer and so on.

We finally got home at 2:45. So much for morning appointments! But I cannot complain, as every question I had was answered and quite a few I hadn't thought to ask as well. Still, it doesn't bode well for the day of surgery.

Oh, and I have to make two phone calls Monday, one to the surgeon and one to the hospital, both to confirm that the surgery is, in fact, happening.

I go back on Friday to have the volume of my arms measured, in case of lymphedema (warning, very scary pictures). Oddly, this is done at the Friends Center instead of by the doctors, even though they prescribe it and want it done. Apparently, because treatment is massage therapy which is done at the Friends Center, it doesn't count as "medical". With any luck, my 10 AM appointment will be over before dark.

OK, this is annoying

I wanted to post some pictures here to show all my wonderful readers how my hair looks now. But I can't. Because Blogspot won't read the URL of pictures posted to the Livejournal Scrapbook, even if they are public. No, I have to use Picassa, or add them to the blog in some other way, or get them into a different URL.

Sorry, not maintaining two separate Web picture files. You-all will just have to meander over here.

And while you're in the neighborhood, click on the tag (list on the right) called "absurd locutions." You will instantly feel better about your own sanity and writing ability.

I can get behind these. Figuratively speaking, of course!

Warning: This entry can only be described as crass and goofy.

Today we took a jaunt over to our old haunts (Brookline, MA, where we lived for 13 years) to visit a local and well-known vendor of ladies' intimates. I now own support bras. They are less uncomfortable than I thought they'd be, and make me look a little bit like this lady.

 (That's a Giant Robot named Aphrodite A, from a Japanese anime called Manzinger Z (also known as Trantor Z). Yes, her breasts are missiles. Yes, her pilot is a teenage girl. Yes, she only has the two weapons, and once they are fired she is weakened and helpless. Yes, the Manzinger Giant Robot has a lot more weapons, is piloted by a teenage boy, and always has to resue poor Aphrodite. Yes, there are bad guys and a mad scientist. Very silly, I know, but you'll never, ever forget Aphrodite A, will you?)

While there, I spotted a calendar put out by a group called All4One, which is four charities who do stuff for people with breast cancer. Most importantly, they provide free post-surgical bras and prostheses to underserved (read: poor) women. And every year they ask BRAtistes (sorry) and celeBRAties (sorry, sorry) to create art objects shaped vaguely like bras, make them up as a calendar, and auction them off at a gala Event.

See the galleries here.

Some of the bras are really art; others, even when they don't somehow have the Art vibe, are quite witty. I bought the calendar, and will investigate the charities involved further. If they deserve support -- and certainly their goal is small enough and worthy enough to be achievable and valuable -- I will let you know.

I did take mild issue with a quote from one of the artists. She made a bustier mosaic out of broken china, garnet rough, and other things. She is a breast cancer survivor herself, and wrote about how her life was "shattered" by breast cancer, and the broken pieces in the mosaic symbolize her broken, pieced-together life.

That's certainly one way to look at it. And maybe, if I was facing mastectomy, I'd feel the same. But right this instant minute I do not feel like my life is shattered, or is going to be shattered. I'm going to have surgery, and my left breast may come out of that surgery looking like it's been munched by weasels. Call me vain, but I'm more distressed by the thought of losing my hair as I pass through chemo and radiation.

I guess this falls into the category of, "It takes all kinds." The lady's art is quite good, and I don't need to share her emotions in order to empathize with their expression.

Speaking of which, a good friend has taken a bunch of pictures of me and will share them as jpegs. So I should soon be able to show you my pre-chemo hair in all its multi-hued glory.