...Is Good News

At the place where Torch and I are, along with many of you, the best news is that there is no bad news.

Dr. Smile's nurse came bouncing gleefully into the examination room near the end of this afternoon's long session to tell us that Sunday's MRI was excellent. The "flare" of edema was significantly less widespread through the left side of her brain and a worrisome spot on the late May MRI was all but invisible. There appear to be no new nasty things growing inside her brain. The nurse credited the Avastin treatments for this promising result.

Like the good news from last week's CAT scan, this leaves us without an answer to the question of why Torch can't walk or talk for the most part. On the theory that these difficulties and her rare falls (maybe twice a week) result from some sort of seizure activity in her brain, the nurse sent us home with a prescription for a seizure medication.

If it works two good things will result: Torch will again be mobile and communicative, and she will be able to start tapering off the steroids.

Stay tuned.

Another Torch Update

Torch asked me to post a quick update:

The July 4 weekend was very scary, with her symptoms (speech, movement, confusion) worsening daily and no response from Dr. Smile's nurse or anyone else at Hospital J until this Wednesday, five days after the holiday. Once we made contact, though, things moved fast.

• A CT scan Wednesday showed that her brain was not bleeding.
  
• We got pemission yesterday (Thursday) to increase the decadron to triple last week's dosage; that should help reduce the brain swelling though she isn't feeling any change yet.
• She will have her MRI Sunday, 11 days ahead of schedule, and meet with Dr. Smile and the nurse Wednesday, eight days ahead of schedule.

She is still not a happy camper but the scariness is receding. Oh, and we've managed a couple of restaurant outings and a very cheerful screening of WALL-E last night.

But remember the discussion of sneezing a few posts back? Yes, she has another cold, a doozy by the sound of it. Oh joy.

Independence Day

Torch asks me to report that she had her third treatment with Avastin yesterday.

She is still struggling with fatigue, lack of coordination, and speech difficulties, perhaps related to the mood-stabilizing drugs but the cause isn't clear. In two weeks we return to Dr. Smile and another MRI that may provide some answers.

Having the Blues

Torch has asked me to post tonight. She feels she is far behind on maintaining this blog.

The good news is that the tension, anxiety, and involuntary fidgeting the steroids had brought on have subsided now that she is taking two mood stabilizing drugs. What a relief, and what a joy to be sleeping again!

The bad news is that her body is again betraying her. She is falling more, having trouble putting words together, and sleeping at every opportunity. And she is enveloped in sadness and rage.

She will be working with her small army of doctors to get the bad symptoms under control and become more like herself. In the near future we are counting on the Avastin to free her from both the steroids and the need for other meds to help with the steroids.

She hasn't quit fighting. On Saturday we walked with our friend to a local restaurant for the first time in months, a grueling trek for her. Last night we went to Blues Alley for a CD release party - not her fault that the show was a disappointment, especially after our last outing to Step Afrika was such a success!

Stay tuned.

And Lithium Too!

Why not? Stabilize me, someone!

Ongoing Updates

I am trying to keep up with the latest bits of news. At the very least I might have everything in some order!

Last Friday Mr. Husband and I set out for Hospital J first thing in the morning. I felt like poop, and had managed to be so under the weather that I missed my weekly check-in, and totally forgot to check for my mucous and urinary values at my doctor. As a result, it was more than four hours later when I finally ran my chemo bags. While I got to lie down and doze, poor Mr. Husband had to hunch up next to my bed while his flu symptoms began. We finally got some food after we'd had many hours (six? seven?) of starvation. If nothing else, we were saved by Friendly's. But it was a harsh trip.

I spent the last few days starting to get better, and Mr. Husband is recovering. I have been reading, rather than just staring into space, and the spouse is actually upright and active. On the down side, I am feeling a number of worsening symptoms, including chattering teeth and shaking, extreme alertness, thick mucus, buzziness, and sudden fits of anger and fear. While I am improved in balance, I still cannot negotiate certain aspects of spatiality. I have forgotten, for example, how to stand on one foot at a time, and find myself stuck on the stairs.

All of this, I think, is going to add another medication. I hate the idea of adding still more drugs to my list, but I cannot imagine being somewhat functional without them. Klonopin is sold as Clonazepam and I have hopes.

So be it.

Back Into The Cosmos

After wheelchairs, staggers, and a voyage to a terrifying new world, I have flown back into the cosmos. I am now taking steroids. The symptoms Mr. Husband described in Update on Torch are slowly receding.

It is physically safer here, but not uncomplicated. I once wrote about

confusion and general inside-outness. The medications alone have given me reason to feel loosely confoosely on my tippy tippy toesies, and the neural inconsistencies are quite an experience...

and I retain, all these years later, an acute memory of a psychotic event brought on by steroids. However, with a little bit of luck I'll have a purchase on the world within the next six months.

The reason I am so optimistic is the appearance in my life, starting today, of a new drug called Avastin. It will likely, they tell me, free me from dependence on steroids by shrinking the edema. It will fight the growth of tumors in my brain. Its side effects are few and have none of the horrors of steroidal side effects.

When we met with Dr. Smile and his nurse on the way to the Cape, they told us that this drug had been approved within the last two months by the insurance company. I've scrambled back from the brink again, thanks to "all manner of unforeseen incidents and meetings and material assistance, which no one could have dreamed would have come his way" (Goethe Faust, 1835 John Anster translation). Oh glory be!

I will receive Avastin intravenously at Hospital J every two weeks until we find out more. They tell me that it has a 60% success rate. This is nothing to sneeze at. I am not sneezing.

Correction

Sorry, everyone; I led you astray! I meant that I was starting the LASIK process today. My actual surgery is Thursday.

The young man who examined me at the Eye Doctor today told me that he was taking time off from med school to do an internship there. He moved here for a year to study optometry, and feels very lucky to have gotten the chance. There are more things, as it goes, in heaven and earth, than are dreamt of in my philosophy. (That makes me Horatio, of course.) Apparently this office is the place to be! I like them because, among other things, the one doctor did his partner's procedure. It is hard to ask for a better recommendation.

One day last week, we drove out to one of our favorite places to eat. To get there, you have to drive through our largest park, and it was fairly dark under the trees at 5:45 on a February evening. I took off my glasses (Mr. Husband was driving, obviously!) to watch the lights one last time. At night in the city, the kingdom of myopia is a magical place. If I could paint, I'd try to make a picture of it - sudden sunbursts, zany zigzags right in front of me, bursts of color.

I am limiting my options, I told someone, by having this procedure. Now I have two options: I can choose to see clearly or I can choose to see the runny watercolors of my near-sightedness. After the surgery, I will only be able to see clearly. The person I was talking shook his head and said, no, you can always choose to close your eyes. Oh yeah, I said. That's right.

Update On Merle

We went to the vet again on Sunday - who knew they had Sunday appointments? - and got good news afterwards: we only have to give him the subcutaneous fluids once a week now!

The vet assistants tried get a syringeful of urine from his bladder to test for infection, which was a loss on all counts; they both got scratched, they were unable to get anything from his bladder (though he peed copiously after the fight with them was over and he was hiding behind a trash can) and everyone was traumatized. The "up" side to this is that when we gave him his sub-q (to use a little vet-speak) that evening he was so relieved not to have a replay of the afternoon that he purred the whole time. I have a friend who is a high-falutin' vet and I'm hoping she'll alert me if she thinks he was maltreated. (Suze?)

And while we are talking about pets, you need to read this. I've never had a dog, but Merle acts like one, so I know the syndrome. To paraphrase, WOE.

It has taken me 2 days to post this entry. Like the man says, ARRRRRRG!

Pet And Purr

Merle came home today. His kidney values are still high with ick like potassium and phosphorus, and that damage is done. However, he is much better than he was last week, and we have him on a new diet that should help, and tomorrow we begin giving him subcutaneous fluids. (The vet did it today while Mr. Husband watched, and he will show me.) In a couple of weeks we'll return to the animal hospital and to get him tested and see how he's doing; we may be able to go to more infrequent treatments.

The best news is that he seems as happy to see us as we are to see him. I took a nap when I got home today, and he was so close to me that he was almost underneath me. He wants to cuddle and be petted and purr and rub up against us and purr some more. And sleep sitting bolt upright on Mr. Husband's lap. And eat.

(The vet gave Mr. Husband two kinds of food to try to see what Merle preferred, which I thought was hilarious. The only thing he DOESN'T eat, as far as I can tell, is carrots, and I bet if they were cooked he'd like them too.)

The sobering part is that this is the beginning of the end of his life. Of course, when I was first diagnosed with cancer, that was the beginning of the end of my life, and it was almost 20 years ago. In the end, it is just seeing the world from a different vantage point. (Okay, that's kind of a big "just". But you know what I mean.)

Prophylactic Amputation*

I returned to work today, or rather, hobbled to work - I broke or sprained my rightmost baby toe a week and a half ago while I was packing, and it is still painful.

It isn't as bad as it could be, though. I had decided, right after this injury happened, that gangrene was setting in. Because I've had some minor numbness in my right hand and foot (maybe from the radiation, maybe?) I was sure I was the second Thomas Covenant. I tortured myself with questions. How would I know if my foot was still there? How would I avoid hurting it more badly if I could not feel it? Would the disease spread? Should I have a prophylactic amputation?

I was verging on hysteria when I went to the bathroom in our hotel room last weekend, took off my shoes and socks, and discovered a hugely swollen and bruised toe. Which was an enormous relief. Because at this point, if a malady can be diagnosed and treated, or even if I know that it will heal, I am grateful.

*beware: icky pictures below the fold

Yo-Yos

I'm done.

Only of course, I'm not REALLY done - in fact, I've been told that the radiation effects will get worse before they get better, but I am getting back two hours or more of every weekday. Given that I am very, very tired, having a little more time in my day is welcome.

Symptoms report:
The apraxia is as it was. I experience the word block effects at least a time or two every day; the key is getting enough rest (enough is about 16 hours a day, apparently, so that's tricky, but I try) and not obsessing about it. Me, obsess?

The hair continues to fall out. (Sorry, 614, didn't get a photo in time!) I now have some gel to soothe the places where the hair used to be, as they are sensitive and also itchy. Unfortunately, it stains. (The gel, not the hair.) I'll be using it at night for maximum impact. It's also apparently very good for chapped lips, which I tried today. I don't endorse the taste, but it did absorb well.

My balance is shot. This was explained to me as a function of my ability, or lack thereof, to triangulate my position. Balance depends on vision, inner ear function, and proprioception, which is "the relative position of neighbouring parts of the body". This is neither an interoceptive sense, meaning that it focuses inwards, nor an exteroceptive sense, which focuses outwards, such as sight and hearing, but "a third distinct sensory modality that provides feedback solely on the status of the body internally".

In a nutshell, if two of these three senses are working right, a person can balance on their feet. (Although you might not guess it from the number of times I've fallen, I am generally a successful biped - just clumsy.) However, it seems I do not have two out of three at the moment, as evidenced by my alarming level of imbalance over the last week or two. At this point I feel the need to hold tightly to a person or a railing when descending stairs or even steep ramps.

This is all probably because of the proximity of the corpus callosum - one of the foci of the radiation - to the optic nerve. (I'm also having some trouble focusing my eyes.) So I have neither the proprioception nor the vision, and grateful as I am to my inner ear (a story for another day, remind me) it is not enough.

The positive aspect, though, is that I am almost at the turning point. I think of it as a yo-yo, playing out over the length of the line, then hovering briefly before starting to climb back up. In a couple of months I'll catch it back in my hand, and we can see what has been accomplished.

And by the way, when a yo-yo sits at the bottom of the string and spins without going up and down? It's called sleeping! What a wonderful idea...

Apraxia

For the last week or two, I have been affected by a disquieting phenomenon called apraxia. The kind I seem to have is apraxia of speech, meaning that although I know what I want to say, I cannot say it. I can hear myself getting it wrong repeatedly, but I cannot fix it. It seems to be happening more often, but the tension I feel about it probably doesn't help. I found this definition:

...also known as verbal apraxia or dyspraxia, [it] is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

My version is probably extremely mild - I do seem to get to the word I want eventually most of the time - but it is making me feel very crazy. (Most of the research that has been done on the condition is on developmental speech apraxia in children, which seems to be unrelated to the kind caused by injury to the brain, and so feels less than useful to me.) While Wikipedia defines apraxia of speech as "difficulty planning the movements necessary for speech" it feels to me like I can hear, see, taste and touch the right word, but it does not come out of my mouth.

The best example I've had thus far was when Mr. Husband and I were driving back from my treatment one day and I was talking about how many treatments I have left. The word I was reaching for was fourteen. I said, "so I only have seventeen treatments left. No, that's not right. I mean seventeen. No, seventeen." I could hear fourteen in my head each time I said it, but it come out seventeen. It was not at all comfortable. But I've been told that as long as I keep exercising the connections that need to be made between the thought and the word, I am unlikely to have permanent damage.

In spite of being well-educated and a bleeding-heart liberal, I secretly find things like this - situations that take one out of the driver's seat, so to speak, of one's behavior - extremely frightening. The ultimate example for me is Tourette Syndrome. I can imagine few disorders more upsetting. Yet I have known several people with it, and they were all interesting, intelligent, even well-spoken people. Still - if I was given a choice (wouldn't it be nice if we were given choices about these things?) I would rather lose my sight or my hearing than have a severe version of Tourette Syndrome.

Now what does that say about me? That I am a control freak? We knew that. That I am obsessive about language? We knew that, too. And also that back in 1989, when my neurosurgeon made a decision to forgo surgery because of the chance of slicing into Broca's Area or Wernicke's Area - well, that was a wise choice.

Going Off In All Directions

As a result of my insurance shenanigans, I wanted to talk to Dr. Surya - who, you will remember, is overseeing my treatment at Hospital F. I've written before about how lovely the hospital is, with the coffee and tea in the waiting room and the floral art and the comfy chairs.

[I can't help but note that two days in a row last week a passage from Les Miserables played over and over the entire time I was waiting, but that's just me. I am a scoffer when it comes to musicals, and was enormously embarrassed when, as part of my job as performance critic for a Gannett paper, I had to attend and review the touring production. I cried my eyes out. Oh well.]

Dr. Surya was not in the office on Friday. That was okay, I said - he'd warned me that he would not be able to be there every day, and it seemed reasonable to me that I would see other members of the practice as well. Sweet Sister C (I just gave her a rap name!) was my driver that day, and I felt like as long as I had a family member with me to provide another pair of ears, I would be fine.

In hindsight I realize that no doctor could be expected to get up to speed in the space of time we had before Dr. Shrug, which is what I am calling the clod whom I saw, had to come in and pronounce his opinion on my condition. "Well," he said, "I'd say you have a brain tumor." Smirk, smirk. I think I just blinked at him.

I had no idea what to say. Options flashed through my mind: oh, so THAT'S what it is! or yes, I know that but I'm trying to find out if an expert, i.e. you, thinks the two are related or simply are you for real? And then he started talking about various things that I know to be untrue, like maybe I suddenly couldn't control my right side anymore but hadn't noticed. I looked at Sweet Sister C like, okay, this guy isn't going to be helpful, and she looked back the same, and we said polite goodbyes.

Then I went to the nurse and made an appointment to see Dr. Surya on Tuesday.

I mean, really. Don't treat me like an idiot. If you don't take the trouble to read my history, that's fine - tell me that you'd rather a) scan the chart before we talk or b) send me back to my own doc. Don't be condescending and a smartass. I don't need it, and frankly, it is a waste of my time. I am acutely aware of the passage of time just now, as (I'm wagering) are many of your patients.

In fact, most of my time is taken up with trying to remember who I am. I am so busy, and so anxious, that (like the fiance in Mrs. Smith's story) I am going off in all directions. Either the worry or the beamlets or some combination thereof is also making me confused a lot of the time, which is both infuriating and frightening. Just keeping my feet on the ground where they belong can be a struggle. Breathing helps. Also meditation. And chocolate, of course.

Speaking of chocolate, I will never go hungry again - my grandmother, wise woman that she is, arranged an enormous gift certificate for me at Biagio. As far as that goes, I am incredibly spoiled and loving every minute of it.

Incandescence

It looks like lightning. Bursts of brightness, gleaming incandescence - at first it scared me. I thought must be hallucinating, or worse, that the radiation beamlets were damaging my eyes. But it only happened once, and the people in the radiation unit have been wonderful about anticipating my needs and questions, and I forgot about it.

And then it happened again. I opened my eyes right away, and I could still see it. About a minute into the second part of the treatment, silent fireworks go off behind my eyelids. I look around, in the very limited way that I can when I'm in the mask (eyes up, right, down, left) and cannot see a source of the light. I figure this is just a strange emission from the machine as it works; maybe a shadow (?) of the real beamlets, which I know are not visible. I determine to ask Dr. Surya on my weekly visit to him.

This is what he told me: scattered radiation stimulates the optic nerve and triggers what looks like bright light. Apparently people see all kinds of color and patterns. So far I have seen white, yellow, and blue light. Sometimes it is like a strobe, other times more sustained, but never more than a fraction of a second. In the last few days the light has been moving, right to left, which isn't surprising because that is the path the machine describes around my head.

But it isn't there. It is loose radiation tapping my optic nerve on the shoulder, for lack of something better to do.

Dr. Surya says he has never had a patient who cared much about this, and is surprised by my interest. I cannot imagine not being interested. This is what will keep me invested in the daily trek (and it is a trek, forty minutes out there to the suburbs in the middle of the day to lie in a machine for half an hour and another forty minutes back) - what wonders will the beamlets share with me today? What color, what shape, will I see them at all? Like mermaids or pixies or other ineffable creatures, they engage my curiosity.

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.

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.

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.

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.

Jokers And Tens Of Hearts

I've been thinking a lot about how people deal with medical situations, especially tests and treatments at specialized facilities. This is probably at least in part because I am thinking more seriously about what I am going to do next. Yes, I came back down to earth and realized that it is crazy to drive to a hospital well over an hour away every day for almost two months for a five-second (literally) treatment. So now I am looking at local places which are highly recommended by all medical folk involved. I already feel calmer now that I have eliminated about 3 hours of traveling a day.

And all this thinking brought back to me the ill-advised trips to the heart MRI place. It was in a suburb about 40 minutes away, in good traffic, and I went because my father's heart stopped beating in, well, a heartbeat, in the winter of 2006, and he fell down dead. His father had died in a remarkably similar manner, and there was concern about my sisters and me. We all drew our doctors' attention to the issue. My particular doctor wanted me to get an MRI of my heart and then go to a cardiac specialist, which I did. Sounds pretty straightforward, doesn't it? Ah, it is to laugh. Ha.

It turns out that they do these things in an office in a strip mall in a suburb. Although I gave the required paperwork to my G.P.'s office two weeks ago and watched the person there fax them last week, they are mysteriously not here in the MRI office. I have taken the whole day off to do this and I am not eager to waste the trip, so they fax it again and I wait while it comes in one... page... at... a... time.

Then they tell me to strip off everything I am wearing and put on a hospital gown. I question whether it is necessary for me to remove my socks, and I am told that anything can interfere with the computer. I should have left at that point. Because there is NO METAL in my socks, and metal is what you need to watch for in these machines, which I know because I've been doing brain MRIs at least every two months for years. But did I leave? I did not.

Instead I lie down on the slider thing on the MRI machine and they slide me in. They tell me not to worry, and I tell them that I have these all the time, that I was probably having MRIs while the tech running the machine was in kindergarten. And she says, "okay, so these tests use magnets?" and I make affirmative noises so she can get on with it. Everything goes really smoothly, except once in a while I hear this strange rustling sound - an envelope being opened? A newspaper being smoothed? - from the little booth where they have the monitors for the machine.

And then there's a beeping and I hear this voice out in the hall say, "hey, I don't know how to do this part? Where are the rest of the instructions?" and I realize that she has been running this whole test OUT OF A BOOK. Which is missing some pages. She comes in and tells me to get dressed, and they will reschedule the rest of the test for another day. I should be grateful that at least she didn't try to wing it, but I am a little peeved.

I get dressed, including my non-metallic socks, and go to the scheduling window. I tell them that I have to reschedule the remainder of the test. The woman at the desk says I can come in tomorrow. (And miss another whole day of work, and all the meetings that I moved to tomorrow because I was going to do this testing today, I think.) So I tell them that unfortunately I will need a couple of days to make another opening in my schedule, and that I will have to call them. And I ask why they scheduled me for an appointment with a technician who does not know how to do the test I need. The answer: "oh, (the MRI tech) is never in on Fridays." Then I must have given her a strange look, because she says immediately, "but we won't be charging you for this visit." Um, no, that's right, you won't.

Fortunately, that last interchange put the whole experience so far over the line of farce that I was more amused than surprised by what happened next. After I finally had the test, I called to arrange to get the films. This conversation ensued:
Me: I live almost an hour away, and I would like to send you a release so that you can send me my films.
Supervisor: Oh, I'm sorry, we don't send films.
M: What do you do if the person lives in another state, then?
S: Well, I guess we would send them, but that would have to be pretty far away.
M: So if I lived further away, you could send them?
S: Yes. Like if you lived more than 100 miles away.
M: So I could have them sent to someone who lives more than 100 miles away, and they could send them to me.
S: I really don't know what they would do with them.
M: I would ask them to send them to me.
S: I'm not sure they could do that.
M: What if I sent someone to get them for me? And wrote a note for them to bring? Would that be okay?
S: No, we could only release them to you.
(And to the U.S. Postal Service, but only if I live far enough away.)

I eventually convinced this person to give them to one of my employees at the time, a lovely young woman who was in nursing school and happened to live in this same suburb. I wrote a letter identifying her, describing her, giving all my contact numbers to call if there was a problem, practically signing it in blood. When I got in the next day a neat package with the films inside was on my desk. And they never asked her for the letter.

Oh, and apparently the tests were so badly done that the cardiologist ran them again in his office in about half an hour, with me almost fully dressed. And there is nothing, nothing even a little, wrong with my heart.

This Just In

The tumor is continuing to grow. The chemo seems to have had no impact at all on it; my oncologist says that what we are seeing now is no larger nor smaller than he would expect if it were running its unfettered course. Clearly I will not be continuing to use this drug, and in spite of some frustration, I know that this is the only way I would have found out this crucial information.

There are several options now. One is to continue chemotherapy and try a different drug. This drug would be administered every six weeks by IV at the hospital or my doctor's office. Another is to try radiation and see if that is successful. The third is to have a brain biopsy to aspirate a needleful of the tumor and send it to NIH to have it classified. Dr. Smile (those of you who have been with me from 2003 will remember my neuro-oncologist) seems certain that unlike the last tissue they classified, this one will qualify as aggressive, which means I can be involved in experimental testing there.

I do not want to do more chemo right now, and I want to save NIH in case all else fails; radiation has by far the best track record with brain tumors, so I am leaning toward doing that. (If you follow this link, please note that I have a kind of tumor that cannot be treated with any of those nifty-sounding approaches like brachytherapy, alas, only external radiotherapy.) It would be a 6-week course with treatment every weekday, as I did in 1989. Although it diminished my appetite and made me quite weak by the end of the treatment, I did not experience anywhere near the level of nausea then that I have had with the last two rounds of chemo. I am going to talk to a radiotherapist colleague of Dr. Smile's before making a decision.

Please understand that we knew we were gambling with the chemo being effective again. While I am disappointed about the continued growth, I am not shocked and am prepared to move on. Last time I had radiation it was tremendously successful, and I assuming it will be again. I am a patient at one of the best brain-tumor treatment centers in the world, and at the moment I am also asymptomatic. I am really ahead of the game in many ways.

On the other hand, well, shit.

The Helping Hand Strikes Again

When I (or to be more exact, Mr. Husband) first thought of writing a blog, I conceived of a sort of ongoing newsletter to my friends and family that I could easily update with new information about my health. As it turns out, it has only rarely served that function alone. It has given me a platform for many musings, only a few of which are actually spurred by my status as a cancer patient. I find that reassuring, actually. When I think of the ways I define myself, the ways that I absorb and reflect the world around me, I am quietly relieved that my health status does not define me.

Tonight, however, I do have some news that I promised I would share. My MRI has been scheduled for next Thursday, a week from today. I may or may not get results the same day; they are pretty good about it, but you never know what will happen in a huge and busy hospital. It will be a long day, since the person who schedules these appointments is, well, let's just say I am unhappy with the way I am being "handled" for the first time since I have been going to this hospital. One of the things on my list of peeves is that they waited too long to schedule these slots, and as a result my appointments (scan and doctor) are at weird and inconvenient times.

Actually, my top peeve at the moment is that this same person, who is a smart and experienced professional in neuro-oncology, addressed me (in an email) by a nickname that I have hated since I was a child. Nobody who knows me personally would call me this. I have a nickname that I do like, and many of my near and dear use it, but that isn't really the point. The point is that YOU DO NOT ADDRESS YOUR PATIENTS BY PET NAMES. Even if this person and I had a long and affectionate history, which we don't, I might not encourage her to use my nickname. We are in a medical relationship, not a personal one, and, for many reasons, I do not want to be pals with her.

I feel the same way when I ask her why something I needed to have done has gone undone, and she tells me how busy she is. This may be terrible, but you know what? I DON'T CARE. I require her services and I (and my insurance company) pay her handsomely for her work. I need the formality that is built into our relationship as patient and caregiver. As sympathetic as she has been, she doesn't seem to consider a scenario in which I grieve - or celebrate - privately. I feel like her paradigm of how our relationship should be is light years away from anything I recognize or want. And I don't need an interpersonal struggle right now.

Mr. Husband and some of my friends are telling me that I need to speak to my doctor about this. And I cannot help resenting that, I mean, can nobody else around here do ANYTHING? I can't be the only patient who has issues. And yet I do see their point, albeit reluctantly. I have always railed against people who complain but don't act on their own behalf, so I better put my money where my mouth is.

But I'm not going to like it. Hmph.

Boggling

Hello, and welcome back. I guess since I am the one that has been gone, I should be the one to get that greeting, but so what?

As many of you know, this last round of chemo was the hardest ever for me. It's interesting that as long as I go to work I can deal with the fuzziness and the nausea and the exhaustion. Even when I am not particularly effective at my job, I can still sit at my desk and not brood about how my body feels. When I am at home, this is not as easy. Maybe it is just the people around me, buoying me along to wherever they are going.

At any rate, the weekend was awful. Suffice it to say that I spent many hours suppressing my gag reflex. By Sunday night I was in tears, telling Mr. Husband that I couldn't do it anymore. I did, of course, with the help of meditation and guided visualization and anti-emetics and sheer will. But when I think about doing this for 5-7 days every month for another year, and then maybe get a two year break (as it was this time) and start again, I am horrified. It isn't even that I doubt my ability to do it. I know I can. The question, God forgive me, is whether I want to.

Because you don't get something for nothing in cancer treatment. (Or ever, maybe, but I prefer to be optimistic, or maybe a Pollyanna.) The drug that I take to treat the nausea causes "trouble sleeping, and anxiety may occur." And one website warned me chattily that with my chemo drug itself "there is a slight risk of developing a blood cancer such as leukemia". Which is to say that in medicine, as in life, nothing is free. But thankfully, no decisions need making this week. And even if it is determined that this treatment is too expensive in the coin of stress and energy, there are other options to be tried.

I need to pause here to register my fervent hope that my sleepless and sometimes haunted nights were researched to a fare-thee-well, because if they were not ABSOLUTELY NECESSARY and UNAVOIDABLE, I want my money back. And that's a lot of money. Meanwhile, I wait for my scans, which are supposed to happen on the 26th.

It is bizarre to think that what is going on inside one's body is only revealed by technology. I keep waiting to feel something, some hint that there is an interloper in my brain, that some struggle is going on. But I don't. How can that be? It is as if you go to the doctor and she orders a test and when it comes back from the lab it shows that you have a broken leg. But you look down at your leg and it looks fine. And it is not fine. So what else around you looks fine and isn't fine? It's boggling.

Boggle is actually a funny sort of word. It's also a word game. The score you get is based on speed and accuracy, so I guess it is a little like typing. I own a gorgeous but somewhat unwieldy Boggle set that the Big Lug made for me when we were in college. What always got me in those kind of games was my lack of patience. I'd see a word. T-A-L-L for example. But checking out all the possible variants bored me. I'd see B-A-L-L, but not W-A-L-L or C-A-L-L, because by then I had moved on. I am not methodical. To say the least.

So you won't be surprised when I jump topics again...

Almost across from our new office is a deli that stocks fabulous fruit - especially watermelon, which is delicious. When I started eating again on Thursday it was what I had. Mark Twain wrote of watermelon that "it is the chief of this world's luxuries, king by the grace of God over all the fruits of the earth. When one has tasted it, he knows what the angels eat. It was not a Southern watermelon that Eve took; we know it because she repented."

All I can add is that I'm glad that watermelon juice doesn't stain, because I had it all down the front of my shirt.

Cycling To Nowhere

This confounded me the last time I did this, and confounds me again today. I am charged with delivering a very nasty drug into my own body. When I did this in 2003-2004, there were reasons why I couldn't always take each treatment as planned; mostly it had to do with my body's reactions to the previous treatment. But this time, though the effect is the same (I cannot take the treatments every 4-5 weeks as I should) the culprit is the medical establishment - to wit, my own doctors.

[Let me just say here that some of my best friends are doctors. My cousin is a doctor. One of my closest comrades from college is a doctor. My newest friend works for the CDC. I think doctors are in an impossible position in this country. Read Atul Gawande's book Complications for more.]

Here is how it is supposed to work. My doctor's office at the hospital (not my beloved regular person) places orders for two drugs - the chemo drug and the anti-emetic - at different pharmacies. The pharmacies call me. I confirm the delivery addresses. They are delivered. The first night I take the anti-emetic pill, which makes me feel confused and disoriented, and an hour later the chemo pill, which makes me feel queasy at best. The next morning I take another anti-emetic, and take both medications in the evening. This continues until I have taken five doses of the chemo, at which point I take only the anti-emetic for two more days. The morning of the eighth day I rest. (God only gave the world seven days of creation. Me, eight days of treatment. I'm just saying.)

When I have the chemo in my system, I cannot vomit, because I take the medications orally. I would lose the dose I just took and have to extend the process by another day. Thus the anti-emetic. And as I think I mentioned elsewhere, I have a raging thirst that never lets up. And just to top it off, I cannot relax enough to sleep, but if I do, I have terrifying nightmares. Also I have to pee constantly. (See "raging thirst" above.) But I can do it. I have done it. I will do it again. (And I can conjugate the verb phrase, too.)

I was ready to start this new cycle last Thursday. The pharmacies never called. When I called them, they said they had never heard from the hospital. And I wonder, isn't it enough that I have to toss back these poisons in my own bathroom, with no soothing or reassurance to be had, with no idea whether this is even helping, without having to chase down the prescriptions and the doctors? Is it really necessary to add insult to injury?

Phacochoerine

I have now completed one (1) dose of chemo. Four more to go this month. And tomorrow I am supposed to serve on a federal jury. I cannot imagine that anyone will have a better reason than I do for skipping my civic duty. (Actually, I always sort of enjoy jury duty - I feel so Democratic!)

There are a number of things about this drug that I conveniently forgot since the last time I took it. For one thing, when it is actually in my system (for about 8-10 hours after I ingest it) my mind whirls. It does not even seem like it is my mind. I have long dream conversations full of disquieting import and peppered with words I DO NOT KNOW. Last night I said urgently to someone at an airport, "triangulate raptorial contradistinctions for declination of jabberwocky phacochoerine!" or some such thing. I had to look up "phacocherine" - it means relating to warthogs. How did that word get into my unconscious?!

The other thing I forgot is that I am always thirsty when I take this drug. Always. When I am not actively pouring liquid down my throat, I am thirsty. The second I put down the glass, thirsty. Parched. Dehydrated. Electrolytically starved. So I am always drinking and - I bet you saw this one coming - I have to pee a commensurate number of times. So even if I wasn't having somebody else's dreams (that's all that I can think of; they sure aren't mine) and feeling very anxious because I don't understand myself and there is great urgency about everything in these dreams I STILL wouldn't be able to sleep because I have to spend half the night in the bathroom.

Four more days. Twenty percent down for this month.

(Is that right? I'm terrible at percentages.)

Checklist for Chemo

1.
Q. Do you have the medication?
A. Yes, I have the medication, and I know that nobody but me should touch it, since I will be exposed to it anyway, and that I should wash my hands THOROUGHLY after touching it.

2.
Q. Do you have the anti-emetics, and do you understand how to take them?
A. I do have them, and although I have not yet read the package insert, I will before I take one.

3.
Q. Do you have time set aside for the first dose?
A. I do. I thought we were going to go for a drive in the country tomorrow (I love that phrase, it's so Victorian!) but Mr. Husband is sick with something between cold and flu, so it looks like we are staying home. I do have federal jury duty on Tuesday morning, but the plan is to go in and tell them that I cannot come because of my new diagnosis. I cannot imagine that they will want me to stay.

4.
Q. So...
A. Yes?

5.
Q. Why haven't you started yet?
A. Oh.
Do I really have to?

Various Oblongatas

**Warning: this post contains non-graphic references to vomiting. But if you are as emetiphobic as I used to be, you may want to skip it.**

Today I learned that the source of nausea and vomiting in reaction to chemotherapy is in the medulla oblongata. This process even has its own name: Chemotherapy-Induced Nausea and Vomiting, CINV for short. As a bodily rejection of toxins, it makes sense, as many bodily functions do (yes, even what you did with That Guy in 1987) but unfortunately doesn't help in the long run. (The comparison stands, incidentally.) So we decided to move my medulla oblongata to my knee by using hypnosis. Now, when the nausea is triggered, my knee will itch and I will do self-hypnosis to control it.

We are going to call it the patella oblongata.

On a more serious note... My anti-emetics arrived this morning. The chemo drugs will arrive at the office tomorrow. Our anniversary is this weekend, and when we return from a very mellow day in the country on Sunday I'll start the first course. My Memorial Day will be a memorial to all who have been through this.

And Thank You Again For Your Support

First of all, a change in plans. I am supposed to present at a conference this weekend and I really want to go. I am cancelling my attendance at another conference to which I really wanted to go because it looks (as I calculate it by the calendar) like it will happen during a treatment period, but I am not giving up everything. So I will not start my new/not new chemo treatment until next week.

Second of all, more MedSpeak. Sometimes it is easy for me to forget, because I've been inside it for so long, that not everyone knows the basics of cancer therapies. Here's a crash course, labelled as many patients do. The options are:

• cut: surgery. This is when a surgeon, in my case a neurosurgeon, attempts to remove, or resect, a section of tissue that is malignant.
• poison: chemotherapy. This is when an oncologist, in my case a neuro-oncologist, attempts to destroy malignant tissue with toxic drugs while simultaneously not poisoning the patient.
• burn: radiation therapy. This is when a radiologist attempts to destroy malignant tissue by radiating it with toxic rays while simultaneously not burning the patient.

These therapies have become more sophisticated by leaps and bounds in the last 50 years. It's astounding how much they can do in the hands of a competent and knowlegable oncologist. But except for gene therapy which, in spite of enormous strides recently, is still largely an unknown quantity, there isn't much that is constructive about cancer therapies.

What I will be taking is chemotherapy, specifically a drug called Temodar (the brand name) or Temozolomide (the generic name, and I cut and pasted that, so don't ask me to spell it). Surgery is not a good option, at least until other options have been tried, and radiation is (for me) the backup for chemo. Temodar is a drug I can take orally at home, which is rare for chemo. (Usually you have to go into a hospital or clinic and have the drug dripped in from an IV. ) It's a 30-day cycle, 25 days off the drug and 5 days on it. As I said in a previous post, I'll do two months of treatment and then have more scans to see how the little bugger is doing.

Third of all, thank you for your support. I know that not everyone has this type of encouragement. I feel so lucky that my community - communitIES, really, of work and family and others - have been so kind.

(A prize to the person who recognizes the title line from an old TV ad...)

Again Into The Breach

I am going to be fine.

(Last year one of my colleagues was badly hurt while riding her bike. The next morning her fiancé emailed a number of people with the subject line "Amy is going to be okay." It was a lovely and thoughtful way to tell us that she was not okay – but only for the moment. )

There are new lesions in my brain. They are (and I quote from the radiologist’s report) “in the region of the splenium and of the corpus callosum on the left/adjacent subcortical left occipital white matter.” All I can see on the MRI is that it’s deep.

So I did some research, and I found it helpful to use the following visual aids. First, a piece of regular paper folded in half along the long side is slightly larger than a brain. Second, a dime is about the same size as the larger of these tumors. If you put the dime just below the center of the folded paper, and slightly to the left, you’ll be in the general area.

In other words,














The consensus from the doctors is that they want to try the same drug I was on for a year last time. Though I resist putting that horrible stuff into my body again, I admit that it worked. The plan is that I will have my blood drawn today and start taking the drugs again on Wednesday. I’ll have scans after two months and we will reevaluate depending on the results.

It does seem a little like a sick joke that today is the fourth anniversary of the surgery that excised most of the 2003 tumors. I’d hoped I would get more time out of the surgery and chemo combination – I got almost 13 years out of the previous treatment! – but so be it. I am more grateful than I can say for the many years I have survived beyond my original prognosis, and the many years I intend to survive in the future.

Starting tomorrow I will be back at work. I have no reason to think that I will be sicker than I was last time – maybe it won’t even be as bad. I am thankful for your prayers and good wishes.