CAT Scan

Perfect on so many levels...

Astonishing Truths

One of my favorite plays is Eugene Ionesco's The Bald Soprano. I have been in it twice, directed it once, and go to see it whenever it is around. Ionesco wrote it after an attempt to learn English as an adult, and his discovery that:

"I learned not English but some astonishing truths -- that, for example, there are seven days in the week, something I already knew; that the floor is down, the ceiling up, things I already knew as well, perhaps, but that I had never seriously thought about or had forgotten, and that seemed to me, suddenly, as stupefying as they were indisputably true." *

This led to the ideas that haunt Soprano - the uselessness and pathos of language, and the concomitant hilarity that dances around it. There's also a certain nostalgia in the play; an irony about fantasies of hearth and home.

This feeling of ironic nostalgia found me as I made my first visit to the Radiation Oncology unit at Hospital F today. The techs (who were lovely, a man and a woman who worked together like a well-oiled machine - I love witnessing that kind of synergy!) introduced me to the machine, which to my untrained eye is indistinguishable from a CT scan machine. Although more cancer survivors have tomotherapy than have other forms of radiation, they did not assume I'd had radiotherapy before.

The first part of the treatment was making sure I was properly aligned in my mask, the second part was having a scan of my head to track any changes in the tumor, and the third was the treatment. While the beamlets skipped gaily into my head, I imagined them coaxing the cancer cells out of their un-rightful places. Afterwards, Mr. Husband and I had lunch and discussed why I shouldn't eat bread or drink beer for the time being. (Thrush. Yuck.) It was altogether civilized.

And to bring this full circle, radiation therapy is responsible for one of my best paper titles ever when I was in college. "A Critique of Ionesco's The Bald Soprano," I wrote, "by Herself".

Too bad my singing voice dropped a register as I aged.



*"The Tragedy of Language How an English Primer Became My First Play" Eugene Ionesco, Jack Undank. The Tulane Drama Review, Vol. 4, No. 3 (Mar., 1960), pp. 10-13doi:10.2307/1124841.

Radiation Eve

It begins tomorrow - mask, beamlets, and all. I have been working like a madwoman to get as much of my workload as possible under control before this starts. Stay tuned...

No Time Like The Present

Hallelujah and praise the Lord. I'm starting radiation therapy on Thursday - exactly five weeks from when I was told that I had five weeks to start. Nicely done, Hospital F.

Honestly, I didn't want to have to bother the Godfather...

Bummer Of A Hairnet

This reminds me of a Far Side cartoon. Like Hal, I am carrying my own target when I have my lovely new hairnet (also called a mask) on. And don't worry, they've covered all their bases - they targeted, oops, I mean MAPPED me from the side as well.

(note target above ear)

I like the look of white plastic hair that bolts to the table, don't you?

Planning

Lepers begging for alms carry a noisemaker to warn villagers of

their approach; from a 14th-century French illuminated manuscript.

I never looked leprous. I guess that you don't look like that unless you have the LONG fitting. (I had the short one.) It was interesting, though. Mildly nerve-wracking in the few moments when they were holding my nose and I couldn't breathe. There were some photos snapped which I will post when I have a little more time - the staff members were confused, but sweet, about my wanting copies of the pictures they took for my chart. They freely admitted that they took them so they would know who I was, which I found refreshing. (Really!)

So now the doctors are fighting, politely, amongst themselves. Apparently the Godfather has Dr. Surya concerned, as his take is that my treatment should be more aggressive than Dr. Surya has suggested. Dr. Brakes (my neurosurgeon in 2003) has weighed in that surgery is not a good option now, so that's one less person to consult, but other than that I think they are involving every doctor I've had since this whole cancer thing started in 1989. Even though most of them on the radiotherapy side were trained by the Godfather, they each have their own opinion - kudos to him for teaching them to think for themselves, but this is not when I most need them to disagree.

I just looked back and discovered that I wrote about meeting with the Hospital J radiotherapist on July 26. That was the day I found out I would need radiation treatment. It was a month ago today - counting by weeks, not by days. When we went to the ill-fated meeting with the radiotherapist-who-turned-out-to-be-a-radiologist, and then finally met with the right doctor, everyone was very clear with me about time being of the essence. That was August 6. I assumed that upon my return from vacation I would go straight into treatment. And yet, here it is, almost the end of the month, and we do not yet have a treatment plan.

On the one hand, I don't want to get in the way - they all know what they are doing, and the fact that they are doing it with the Godfather makes it feel safe to me. They need to consider everything, and I want them to. But what will it take for them to make a decision? Even if they do what they are talking about doing, and create a computer model of my head and subject the model to the treatment I received in 1989, they can probably figure this out in a few hours.

As an aside, I also got the impression from Dr. Surya that I am not a typical patient. (I guess to start with, he doesn't have a lot of patients who first heard about their imminent demise almost twenty years ago.) But what he was talking about, I think, is that I am not interested in holding them culpable should something not work out as planned. I know that they are doing their best for me. But because everyone is in an unmitigated state of fear regarding litigation in this country, there's a constant litany of cautions. I want them to know that I understand what is and what isn't at stake, and stop it with the warnings. I get it that there are no guarantees.

Today I made a plan of my own. I will give them one more week. If I do not have a treatment plan by next Thursday, I am going to raise holy hell - including calling the Godfather if necessary.

Leprosy As A Learning Experience

Dr. Surya told me that after being "mapped" - i.e., having my face strapped into a piece of honeycomb patterned plastic for an hour so that the machine can learn where to send my beamlets - I will look like I have some form of explosive leprosy. He said that many people decide not to return to work on the day that they are mapped.

Hell, if I have to go through this, I am taking my colleagues with me. Working with me is always an education!

Beamlets

One of the most reassuring things about Hospital F is that one of the doctors there, Dr. Asclepeia, was a resident at the hospital where I received treatment when I had radiotherapy in 1989. We stared at each other when we met again last week, each willing the other to remember, but neither of us did. Nonetheless, she remembers the context in which I was treated, her mentor (like everyone else) is the Godfather ¹, and she knows my past. I don't know why that matters, but it does. It is a little bit like discovering that you lived across the lake from someone that you never met, but with whom you share certain landmarks - the buoy would have been to her left, my right, but we were both aware of the rocks it marked.

She will not, however, be my primary doctor at Hospital F. That will be Dr.Surya. (I thought a name that was associated with beams, like sunbeams, or radiation beams, and Indian intercontinental missiles would serve. Yikes! But I suppose there is aggression in this treatment, because there has to be. I want to drive this thing out of me.)

Dr. Surya is a brand-new addition to Hospital F. As recently as last month, he was at Hospital J, so he knows the folks over there. That makes me feel like things are less likely to fall through the cracks. After all, he knows not only names and reputations, but actual practices by his former colleagues. I admit that I listen to doctors talk about each other with a certain amount of relish. Apparently Dr. Smile (who, you will remember, is my neuro-oncologist) is known as fairly conservative, so Dr. Surya was surprised that he'd advised this treatment.

The essential difference between standard radiation therapy and this type of radiation therapy, which is known as tomotherapy, is about dosing. Radiation doses are measured in grays. With traditional radiotherapy, if there is such a thing, the radiation doses are generally delivered from two or three sides. (See below. The assumed dose is 60 grays. The picture is from above my head and behind me - I'm looking at the top of your monitor. The black thing is the tumor. The arrows show the direction of the radiation.)

If you dose from just two sides, as above, then you must give half the radiation from each side. That means that at the very least, the cells on each side of the head are getting walloped with that dose of radiation. But some smart cookie realized that with more sites for rays, there would be less incidental irradiation of the tissues in between.

It's the same amount of radiation to the tumor, but easier on the tissue between. Once they'd gotten that down, it was a short distance to the inevitable conclusion - that this can be done with a gazillion itty bitty doses from a gazillion directions, and the healthy tissue in between will not suffer nearly as much. With IMRT (intensity-modulated radiation therapy) the key is for the patient to be positioned exactly the same way for each treatment. (The picture is not accurate, but gives an idea.)
This requires a special machine, of which, if I understood correctly, there are exactly 4 in the greater metropolitan area where I live. In addition to performing this high-density treatment, the machine also takes a new image of my brain every single day. Thus, the treatment can be responsive the activity of the tumor; as it grows in one place it may shrink somewhere else, and the machine can be adjusted accordingly.

This week I am going to have my mask made, which I will wear when I have treatment. (See here for more on that process.) On one of the web pages connected with the manufacturer of the machine reads, “the only machine designed from the ground up to do IMRT is TomoTherapy. So, if you want to sculpt the dose and aim at one thing and miss another, there is no other option." With the mask on, and the machine calibrated, the likelihood of the radiation going much outside the intended treatment area is very small. (For more information on TomoTherapy, go here.)

There are potential side-effects, more than I had thought originally, and they could be permanent. Mostly they have to do with vision - my eyesight has never been great, but I may lose part of my field of vision on the right. (My "good" eye, ironically enough.) If that happens, I will not be pleased. On the other hand, if it staves off the cancer again - well, I will figure out how to live with it.

Plus, I love the word "beamlet", which what they call the tiny beams of radiation. My sweet little beamlets!

¹The Godfather is what I am calling the doctor who oversaw my original radiation therapy.

May I?

First off, let me just draw attention to capybaras in the news. Remember, they are equines, not rodents.

Second, I have a treatment plan and will be going to Hospital F for radiation. I am impressed by them and particularly by the guy who will oversee my treatment. I am going to have my mask fitted next week. (And explain that strange statement!) There will be an exhaustive posting on this tomorrow, with more than you ever wanted to know. Today I am too tired.

Third, the Grant has taken another tiny step toward us, so I will have a lot of work to do before Wednesday, to help prepare my CEO to negotiate. Exciting!

[Does anyone else remember playing "Mother, May I?" as a child? Here's a description. I think it may have been the only time I was so polite. Going through the steps to get this money feels a little bit like that.]

Cute Baby Mammals

I typed "cute baby mammals" into Google because I don't think birds look very cuddly and fish, well, it's hard to get past the fact that they're wet. I looked through pandas (their fur gets all brownish if they don't have baths) and puppies (they require housebreaking) and remained uninspired. I almost settled on this guy, who is doing exactly what I would like to be doing but cannot find a moment free enough of anxiety to let it happen. However, there's something so balanced, so serene about him, that I realized he could never be part of my life. Don't get me wrong - I find my own form of serenity, but it is usually the pandoran result of clumsiness.

Then I remembered the majestic, the bizarre, the make-you-look-twice-to-see-what-the-hell-it-is, capybara. Look at the nobility in this photograph. The capybara is the strong and silent type. I have long thought they are secretly related to camels, which explains the nose, and hippopotami, which explains the birds.

So it was with horror and regret that I read, after basically falling in love with them on line (how many ill-fated love stories have begun that way?) that capybara are the worlds largest rodents. Like the rats in the street. The ones that hide under my car. And jump out JUST TO SCARE ME and run over my foot with their nasty little claws. And are all rabid, probably.

At this point, however, there is no turning back. Look at the cute ears! The dogged determination! The lingering half-smile! The commitment to family!

So from now on, the capybara is a form of equine - not sure what form, but that's enough for me.

capybara happy among his/her brood

Errata Compounded

I try not to be too self-referential in this blog, or create posts that require that someone to read some previous post to make sense of them, and boy was that a strange sentence phrase, but blame it on driving 11 hours home today. What? Oh, yes. I felt I had to put this here - it is too good to miss.

Tonight we got home from vacation. I listened to our phone messages. There was one from Tuesday, from the clinic where I saw Dr. Mistake. (Go to the entry entitled Errata.) They figured since I had MISSED MY APPOINTMENT with him, they'd better check in to make sure I didn't need to reschedule.

Missed my appointment. With the radiologist. Whom I was never supposed to see in the first place. Who is not a radiation therapist, because they do not have those at that facility, but where I was given an appointment anyway. All of which seems deeply mysterious to them, and is probably my fault because in their parallel world I apparently missed the appointment that I actually waited for half an hour, thus further delaying my vacation.

Sometimes I wonder how much of my hair actually fell out on the first round of treatment and how much I tore out in frustration.

(For a beautiful image of a bald woman, see http://imsc.usc.edu/haptics/LostandFound/contemporary_sb_3.html.)

Errata

The title is a warning. Settle in, folks, because this is going to be a long one.

I now know less than I did when I wrote my last entry. Funny, that I live in a moment where unlearning is more pervasive than learning. I would be happier if I was learning more, and I suppose that in a way, I am learning, but I am learning that some of the things I thought I learned were wrong.

In The Sound Of Music, when Julie Andrews is teaching her young charges about singing, she begins, "start at the very beginning - a very good place to start." So I am going to go back to before last Monday.

After I had my workup with the radiation therapists at Hospital J, we all agreed that I should also check out Hospital S, which is much closer to where I live. (Radiation therapy is a time commitment, in that one is treated daily, and convenience counts.) Hospital J is where I have had all my treatment to date in this city, including the craniotomy and subsequent chemotherapy in 2003. In the course of arranging the Hospital S workup, I ordered the Ancient Scans from Hospital B, which is where I was treated in 1989.

(Bertha totally came through with the scans, by the way - not only did she send them, she called later to make sure they'd arrived. We need more Berthas in the world.)

The radiotherapists at Hospital J were really comfortable with the team at Hospital S, and my primary care folks were as well, so it looked like everything would be copacetic. The only problem was that their first available appointment was not until this last Monday, when we were supposed to be on vacation. I didn't see how I would be able to relax until there was some resolution as to where I would be treated, so we rearranged our plans to remain in town through Monday and leave for vacation immediately after the appointment. It looked like all would be smooth sailing.

There is a cartoon by Sidney Harris that I have always found hilarious, which shows a mathematical progression that includes a miracle. What happened next in the story of Monday is like the anti-miracle. Somehow there was a misunderstanding of mammoth proportions and I ended up at the office of a radiologist instead of the office of a radiation therapist.

"So what?" I hear you ask. Well, radiologists use radiographic techniques (like PET scans, X-rays, MRIs, etc.) primarily for imaging and diagnosis. Radiation therapists use radiation to control (i.e., destroy) malignant cells. While both are amazing advances in modern medicine, THEY ARE NOT INTERCHANGABLE. Add to this the fact that the medical group where I went on Monday acted as if I had set this up myself on purpose to confuse them (the doctor's first words to me after he looked at my chart were "what are you doing here?") and the lengths I went to make sure we'd be in town for the appointment and you will get a sense of my frustration. Then this doctor - we can call him Dr. Mistake - told me that I'd need to reschedule, because I'd gotten the appointment in the wrong place. Never mind that we'd put off our vacation. Never mind that I was waiting to find out what treatment would be more likely to save my life. Oopsie!

Maybe he actually looked at me for the first time then, and saw that I was about to blow. At any rate, Dr. Mistake suddenly started moving on my behalf. He does work at Hospital S as well as at this clinic downtown, and he called what said was the "bat phone" to get me in immediately. (I thought at first he said "back phone" - medical places frequently call the line that goes directly to the medical offices the back line or back phone - but it turned out he was invoking the power of Batman. Which redeemed him somewhat for the initial condescension.) He came out with a name on a slip of paper and told us to get there right away, because she would be waiting for us.

We jumped in a cab, zipped to our house, grabbed the luggage we'd packed for our vacation, and leapt into the car. We were at Hospital S in about an hour. They swept us in within moments. (At least, they tried to. We got to witness some internal power struggles as the receptionist battled for me to fill out every piece of paper she could find before I went in, because of course that is the most important piece of the treatment plan.) I was still filling out paperwork when SuperNurse came in. Lovely, funny, sweet, comforting, and smart. She got my extended health history and made a brilliant suggestion, which I wish I'd done years ago - write up my health history on my computer and bring it with me everywhere! I'm working on that now.

And then we met WonderDoc. Oh my. I didn't think anything could redeem that day, but I was wrong. She was so ON. On her mark, on her game, on the spot, on her toes, on track, on the go, on tap, on point, on a dime, on time, on board, on topic, on the ball, on a wing and a prayer, on the money, on top of (and I mean this in the most admiring way) SPAGHETTI. It was so reassuring to be treated as an intelligent adult by another intelligent adult. She never condescended. She explained all of her suggestions. She made sure our questions were answered. By the end of the appointment, she had made me a list of things to do right away, all of which made sense in a way that they never had before. And I'm not even telling you about her burgundy patent leather shoes.

Of course, I desperately want WonderDoc to treat me, and she will if she can. The problem is that there are roughly 4 million different types of machines that they use for radiotherapy. Given that I have already had radiation treatment once (albeit almost 20 years ago) the doctors are eager to expose my brain to as little radiation as possible. In order to do that, they are looking at two forms of radiotherapy: IMRT and tomotherapy. Hospital S has a machine that does IMRT, but not tomotherapy, which WonderDoc suspects would be better for me. For that, I will have to go to Hospital F.

Quick and dirty definitions: IMRT stands for Intensity-Modulated Radiation Therapy. In other words, it is high-precision radiotherapy that "utilizes computer-controlled x-ray accelerators to deliver radiation doses to a malignant tumor or specific areas within the tumor. The radiation dose is designed to conform to the three-dimensional (3-D) shape of the tumor by modulating the intensity of the radiation beam to focus a higher radiation dose to the tumor while minimizing radiation exposure to surrounding normal tissues". (See reference here.) Or, in OTHER other words, there's a computer that makes sure that you only hit what you want to hit with the radiation. What I am less sure about is whether tomotherapy is basically a form of IMRT, with an excruciatingly exact machine.

I will learn more, however, because next Wednesday I will see Dr. Asclepeia at Hospital F, and we will talk. In the meantime, I've set up a mapping appointment (when they will made a mask of my face to guarantee my position for each session will be the same) with Hospital S, in case she suggests that I go back there.

The overlay to all this, and perhaps the redeeming feature of the whole mess, is that every single one of these doctors was trained by the man who was my original radiotherapist back in 1989. I am going to call him the Godfather because he seems to be responsible for all the radiotherapists on the planet, or at least on the eastern seaboard. WonderDoc called the Godfather to consult about my current situation, and he opined that the course we have begun seems "reasonable". I trust him.

Needless to say, this is not how I wanted to leave things before I went away. Nothing is pinned down and it makes me anxious. Rather than feeling resolved, I feel at sea, a dark sea with potential monsters brushing against my windmilling legs in the water. But on the plus side, the Godfather is satisfied that we are on the right track.

And at least I saw the right kind of doctor in the end. That was good.

HI!

Sometimes people write to me on this blog, and sign their names. My maternal aunts both fall into this category, and my mother, bless her. Sometimes Anonymous writes to me, but I know who it is - either how the person writes or something they refer to gives them away. And then sometimes Anonymous writes to me, and I have no idea who it is. A couple of times I thought I could probably figure it out if I set my mind to it, but mostly I just don't know.

Of course, these are the postings that are most fascinating to me. How did they find this unpublicized (for the most part) collection of sporadic semi-essays? Do I know them? Would I like their work, too? Does mine reveal anything to them? I will never know these people, unless they choose to reveal themselves to me; technology has given them a kind of anonymity they could never have dreamed of in my childhood.

To earn what I whimsically call a "living", I work at a non-profit organization. My staff is not entirely, but almost entirely, twenty-somethings. Their primary forms of communication involve technology. This week the Washington Post Magazine (it was their annual education issue) ran an article by a teacher who assigned her students a 24-hour period without said technology. I read it with fascination, and realized that my cohort of peers falls squarely in the middle of nothing, technology-wise.

What do I mean? Well, we had to take computer class in high school. I would not have taken it otherwise, because I was sure it was a sneaky way to make me take math. The assignment for the quarter - yes, the quarter, three months - was to write a program that would make the word "HI!" appear on the screen. I did it, eventually, but I never understood quite how.

When I got to college, the most forward-thinking of my classmates (which did not include me, as I was convinced that personal computers were a passing fad and would go the way of beta tapes) had huge computer boxes waiting for them in their rooms when they arrived. With these machines, they could store their writing - or lose it spectacularly. I didn't trust them - the machines, not the classmates, although in retrospect there were a couple of those whom I should not have trusted either.

Over the summer I doodled around on my mother's IBM-compatible machine, which ate enormous disks and spat them back out at regular intervals, presumably with data on them. I put a few things on these disks - I remember writing a few letters - but it certainly wasn't a primary means of storage for me. The IBM Selectric that my mother bought me for college (with a key that AUTOMATICALLY ERASED the last letters entered, oh joy of joys!) was my instrument of choice.

I lost this battle, needless to say. I finally entered the digital age, thanks in no small part to the generosity of my uncle and the simplicity of Apple computers. Now I have a HP laptop which I adore and can spout URLs with the best of them. I (like many introverts) like email more than any other mode of communication. I play solitaire on my computer instead of with real cards.

And yet, unlike the "millennials", on Sundays, I revel in leaving my cell phone at home.

Bertha's Will Be Done

Things are looking up! First of all, I do not have thrombocytopenia anymore. This is excellent, as those of you who have ever spent any time at all with me will certainly agree that I fall down as least as often as, and perhaps more often than, the average person. This has always been true and is not neurologically as much as genetically preordained - my father had the same problem with what I euphemistically call "losing control of my environment". Having the blood condition even for those few days left me with a bruise on my side the size of a dinner plate, if dinner plates were oval. Now I can breathe easily about my next spill, knowing that I will lose only my dignity, and not blood.

Second, we went to the hospital yesterday and talked to the radiation therapists there. They were terrifically nice and very encouraging. They both talked about a fairly recent German study (1999) in which patients who had previously had radiation therapy repeated it. Apparently there were far fewer problems than had been anticipated. (The reason there is no link to the study is that I refuse to pay $15 for a 48-hour window of opportunity in which I can use the article. Greedy researchers! But if you are interested, it is at http://content.karger.com/ProdukteDB/produkte.asp?Doi=61208.)

They said that only 10% of the people treated in this study had any lasting problems after the radiation was over. You know that most right-side functions are controlled by the left brain. For me, problems that might develop would be weakness on my right side, vision problems in my right eye (maybe even losing part of the field of vision) and short-term memory loss. Loss of short-term memory, that is, not a short-term loss. And the course of treatment would probably be more like 4-5 weeks, not 6.

It interested me that they laid out all their arguments as if I might decide against doing it. And of course I might. But people at the very same hospital have made very persuasive arguments for doing radiation, not the least of which is that it works better than anything else. I liked these two doctors so much (though the older one was quite strange) that I did not challenge them on this. But I could imagine asking them, what were you thinking I would do about this tumor in my head, then? Because it seems to be growing.

The third gift was that ordering copies of my old scans from the hospital that treated me 18 years ago went almost inconceivably well. (Yeah, that's right - I've lived with this supposedly terminal illness for almost twenty years. HA!) If the right material arrives on Monday it will be a kind of oncological records miracle. And I will thank Bertha, my administrative friend in radiation oncology up north.