Thrombocytopenia*

My platelet count is low. I have petechiae all over me. And bruises galore. But what I really resent about this time is that this is ALL I have gotten from the chemotherapy - no benefits, just side effects.

The thrombocytopenia has happened before. The first time, I was 16 and had mononucleosis, and my doctor called me at home personally, so I knew the news couldn't be good. I thought she'd let me wait until my mom got home before leaving for the hospital, but she didn't. I guess they thought that maybe my bone marrow wasn't churning them - platelets - out at all, because I had the second bone marrow extraction of my young life that day. I was crying (those needles really hurt!) and rubbed my eye. For the rest of the week I looked like someone had clocked me. They wouldn't even let me get out of bed to use the bathroom unless someone walked with me.

The second time was right after I had radiation in 1989, and I can't remember how the platelets were revived, but it wasn't particularly traumatic.

The third time was about ten minutes before Mr. Husband and I left for vacation in 2003, having weathered the brain surgery in May and the beginning of chemo in August. My doctor called and told me that I needed to come into the hospital for a transfusion. Those of you who remember this story know what happened next: I started crying inconsolably, my sister Froggie (who was living in DC at the time and had come to see us off) tried to comfort me, and Mr. Husband got on the internet. Twenty minutes later he'd made reservations for us at an inn near the hospital. Leaving the capable Froggie in charge of the cat, we got in the car and drove off.

I thought I understood serendipity before that trip, but I didn't. First of all, the Wayside Inn turned out to be a charming place with amazing food. And chocolate kisses in strategic places throughout the house! Second, while wandering around the town we found a store that made custom stained glass panels, which we'd been talking about ever since buying our house. The beautiful transom over our front door? We designed it on that trip, and Len from Great Panes drove to our house to install it. If we had taken the vacation we planned, it would have been wonderful - but these things would never have happened.

We've gone back the Inn several times since then - we've celebrated birthdays and anniversaries there, and for me it represents (to coin a phrase) the ability to make lemonade when life hands you lemons. (Which is a skill I am trying to perfect, if anyone is wondering.)

Now if I could learn to make my blood clot without platelets, I'd be all set.

*a.k.a., low platelet count

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.

Grant's Proposal

Hubbuda hubbuda hubbuda. That's what we used to say when we were just too tired to be coherent, which pretty much describes me tonight. In an effort not to think too much about Thursday (or Thrusday, which is what I wrote first, because why isn't there a Thrusday?) I am working my fingers (or finfers, which is what I wrote first, because on Thrusdays I have finfers) to the bone.

Not to mention that the Grant (it is capitalized because it has TAKEN OVER MY LIFE) is has now oozed its way across my desk and into all of my filing drawers. Everything is coated with Grant goo.

So here's a kind of funny story, my mother used to be in a sort of work/study group and they were working on a grant proposal and I was about ten and I thought they should just write, Dear Julia (Mrs. Grant's first name was Julia) will you marry me love Ulysses.

If that last paragraph does not indicate a need to go to bed, I do not know what would.

guess whose tomb this is!

If I Only Had This Kind Of Patience

I was not planning to start a blog post tonight, and then I visited this site and was blown away by the fact that this person cobbled together this whole video from tiny teeny pieces of recording. Teeny. Tiny. It is amazing - not the video itself (I'm no expert, but I like it) but the PROCESS.

I can hardly concieve of having patience like that. I generally abandon any project that requires more than three hours of work, and I grow steadily more resentful after a whole day. Even if I keep working on it, I grumble mightily. I feel the deepest respect for Fredo Viola.

(Thanks to Dooce for the link.)

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.

Ow

I'm sorry, I just can't do it today - too many hours at work writing another section of the never-ending proposal. Carpal tunnel is acting up and I simply cannot type another wo

Hubbub

Today the hours seemed to just slip by. Partly this is because I love what I do. I truly do, and it is a good thing, because if I didn't it would be a lot of time to spend doing something I don't love, if you follow me. But partly it is also that I feel so very much better than I did last week. I mean, how can I complain? I'm not even nauseous!

When I think now about how low I am setting the bar for a good day, it seems a little sad. On the other hand, I am SO grateful for the quiet days. I feel like sick days are noisy, and since they tend to come in bunches (along with the treatment) it is like receiving a bouquet of noise. Cacophonous carnations.

Some years back, my colleagues and I took the Myers-Briggs Personality test. We actually took the tests (you can take a similar one here) at home and sent the score sheet in, and then a facilitator came to us to explain the results. I'd taken the test at least twice previously, and although some details changed in my profile, one thing was absolutely clear: I am an introvert. Closeted, perhaps; years of acting classes (and a little of what my therapist calls dissociation) have served me well in that most people do not think that I am introverted at all. People actually laugh when I tell them how hard it is for me to introduce myself. But it is.

So you can imagine how surprised I was when the facilitator started at the EXTROVERT end of the spectrum and called my name first! She talked about how outgoing I am, and how I loved to be with other people, and how I secretly might fear being alone. (Just so you do not get the wrong idea, she didn't identify me by name, but used a number that had been assigned to me earlier. I outed myself later, which I suppose was a bit extroverted.) About how I gained strength from people. How I loved hubbub and how groups made me come alive.

At the break, I went up to her and asked if there was any way she could have mis-scored my test. She was quite smug about it and explained intensely how people's scores do change. I said I was sure they did, but I'd been an INFJ every other time I'd ever taken the test. I think the fact that I knew the shorthand helped (Introverted iNtuitive Feeling Judging) her justify revisiting my score. But that night when I went home, I had this little voice in my head murmuring this cannot be right. And if it is right, is this what it feels like to love hubbub? I hate people. (Which I actually do. I like some particular persons, though.)

The next day when we began she started by very graciously apologizing to me. She'd somehow managed to score my test - mine, and one other - absolutely 100% backwards. So I was not the highest-scoring extrovert in the group, I was the highest-scoring introvert. Which means that it makes sense that I would associate noise and yes, hubbub, with something that sickens me, and quiet - blessed, lovely quiet! - with something that feels healing to me.

An interesting question: would an extrovert experience an unpleasant physical experience like chemotherapy as too quiet? I am clearly the wrong person to ask.

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.

Five Minutes

I am five minutes away from starting a new round of chemotherapy. When I was a little girl, I held my nose when I had to eat something I didn't like. I liked most foods, so it didn't happen often. There were some legendary dislikes, though - yogurt, primarily. I even tried to learn to like it, since I wore braces for five years and starved through every adjustment to my wires. I tried yogurt with sugar, plain, every conceivable flavor. It just wasn't going to happen; I still don't like yogurt. And now "I'm grown up and can have what I please" I just don't eat it.

Not so with the chemo, unfortunately. We're about to find out if I can hold my (proverbial) nose for a week.

Signing On The Dotted Line

I think I've mentioned before that part of my job is making small grants. The process involves phone calls and faxes and signatures, but the final challenge to the grant comes when our affiliate returns their pledge to me so I can initial and date it. Then it goes to our financial folks to be paid.

I get, I don't know, maybe 4 to 8 of these every week, and I try to turn them around quickly. Since I am the person who writes the original pledge to begin with, I look at my signature fairly frequently. And I like the way my handwriting looks. I practiced for years with an italic nib to learn how to shade my lines, and I love it when I have a good pen and can swoop through the downstrokes. When the ink is flowing properly and you have the right kind of paper, even writing a grocery list is a joy.

Offices do not have the right kind of paper, for the most part. Copy paper - yuck! It's too slick to absorb ink, and no amount of blotting will help. I only keep one "real" ink pen at work now, and that's for emergencies. I have to confess, though, that I took Mr. Husband's last name when we got married partly because I love signing it. Swoop! Swoop!

All of which is to say, even when I am writing something as pedestrian as a promise to give an organization fifty dollars, I take a certain amount of pride in my penmanship. (Penwomanship?) At the same time, I have never really believed all the hoopla around graphology, although (like reading tea leaves) it will inevitably be right some of the time. But sentences like "large size handwriting can mean extrovert and outgoing, or it can mean that the writer puts on an act of confidence, although this behaviour might not be exhibited to strangers" seem confusing and vague to me. I mean, how many extroverts do not seem outgoing to strangers?

Until today, that is. Because today I received back two pledges I had written. One was written about ten days before my office moved. At that point I had put two or three things in boxes, and made a couple of lists. It looks like, well, my signature, swoops and all. Legible, but stylized.

The other was written the day before the move. And you cannot even READ IT. The shaky letters tumble over each other and there is no discernible line to the scrawl. Oh yeah, I was fine with having everything boxed up and taken away. No problem.

what does your handwriting say about you? find out here...

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?