Friday, December 26, 2008

Merry Christmas!

Hello everyone—that is, if anyone is still reading—and Season's Greetings (what a ridiculously meaningless phrase, no?) to everyone! I'm sorry it's been so long (15 days!) since I've posted any information about myself, but that's really because there hasn't been much new to tell. Mostly I've been doing my typical Christmas season stuff, which means sewing mittens and knitting hats, some of them even for other people, and baking cookies, and generally keeping myself busy way too many hours for someone with no job who's not on chemo, let alone someone who is on chemo.

It finally caught up with me a little bit last Monday when I woke up feeling pretty sick to my stomach. I took a Compazine and went back to sleep and got up at 11:00, when I thought I was feeling somewhat better so I ate two pieces of excellent banana-oat-blueberry bread that I'd just made the night before. They stayed with me until about 1:00pm, then forcibly ejected themselves from my body. I went back to bed. I slept off and on all day, had some ginger ale around 6:00pm, threw up again at 7:00pm, then watched a movie and went back to bed for good. I had a slight fever at the height of it—about 99.6.

Tuesday was to have been my infusion day, but it seemed like a bad idea to bring my bugs into the clinic, and also to add poisons to a system already taxed, so it was postponed (I had hoped to be able to skip it entirely, but no go). I felt pretty good though—no stomach pain, although I still didn't want to eat much—so I continued the last bits of frenetic activity I wanted to finish before the next day, then went to a party in West Seattle with Ian and several dear friends.

Wednesday morning, Christmas Eve, the day we were celebrating with my family, I woke up—not surprisingly—feeling a bit ill again. I soldiered through, though with the help of the stronger anti-nausea Zofran, and Ian and I prepared a breakfast quiche (lamb sausage, sharp cheddar, sautéed mushrooms and green onions), fruit salad, and eggnog lattes, and ate only about two hours after we'd intended. Mom and Marsh actually drove in from Hobart; when they finally made it home around 9:00 or so that night, they called and told us it had snowed another 10 inches while they were away! We had a few extra family members over for dinner, including Cousin S (lamb, potatoes, salad, Brussels sprouts, pecan pie, lemon chiffon pie). Mom and Marsh made it up their driveway after only about twenty minutes of digging.

Thursday morning, Christmas Day, the day we were celebrating with Ian's family, I woke up feeling much better. We served them French toast and bacon, and more of the cinnamon rolls Mom had brought the day before, as well as a fruit salad and eggnog lattes and mimosas, and I was actually able to eat a reasonable portion.

This morning I felt like one of those people who had to go to work at 8:00am, when my alarm went off in the dark and I hurried off to the clinic. I got 500ml of extra saline today because I'd been sick, and I do think it helped. It was certainly obvious that I needed it when, in the four hours I was there, I only piddled once.

In weather news, we've loved the recent snowfalls. The 4-Runner is an excellent, excellent snow beast, so if we wanted to go somewhere we could. If we didn't, however, the weather offered a perfect excuse. I felt worse and worse as the days progressed for all those people who really did need to be somewhere and really couldn't make it. But still—snow! On several days in a row! In the middle of the city! I loved it.

I really can't believe 2008 is already winding down. It's certainly been a momentous year for me in a lot of ways . . . and pleasingly calm for many of the same reasons. I certainly feel that I learn more about life with every breath. Be gentle with yourself, and be gentle with others. And ask for what you want—that's the only way for the universe to know.

Tuesday, December 9, 2008

Tumor Marker

It was 81, so 37 down from last time. Not bad!

Ho Ho Ho Merry Exhilarating Christmas

I had a Shakespeare teacher tell me once that the difference between comedy and tragedy in Shakespeare's time was not so much that a comedy made you laugh more than a tragedy, but rather that comedy had a happy ending and tragedy a sad one. Perhaps it's also true that a comedy is a situation that makes you laugh in relief.

At any rate, we had a bit of a comedy, as it turned out, on Sunday afternoon. We went out to Maple Valley for our annual tree-buying expedition—me, Ian, L&S, Dr. T, her former mate R, and their two kids, M&D, and Cousin S. Mom and Marsh cooked us a fabulous breakfast, as always (that's one of the main reasons we keep coming back), then we headed off to their neighbors' (who own a cut-your-own tree farm) to cut our tree.

Well, the morning had been relatively dry—misty, with a few small showers. As soon as we trekked off into the rows of trees, however, the monsoon hit. Except it was 42 degrees, not 90 degrees. Nevertheless, soaking wet, we all got trees. Friend Dr. T chose a corpulent Grand fir, and Ian threw it up onto the roof of our car with our more modest Fraser fir. I stayed pretty firmly indoors, or outdoors under my umbrella, while all this was going on. Anyway, after the milling about and the almost endless goodbyes, we got on the road, Dr. T and Cousin S following us to Dr. T's house in Dr. T's car.

All went well until we got on I-90 to return to Seattle.

Ian accelerated up the on-ramp, and suddenly shouted "OH SHIT", with a great deal of alarm in his voice. I immediately dropped my knitting, quick enough to turn and see Dr. T's tree bouncing down the middle of the freeway behind us. "What do we do?!?" Ian cried, as I fumbled around the car, frantically looking for my cell phone.

"I'm calling 911," I said. "Let's get off at the next exit." So as Ian drove us off the freeway and into holiday strip mall traffic, I called 911 and reported a tree in the middle of I-90 that had fallen off of our car. I then called Cousin S. "Hey there," I said. "Did you see T's tree fly off our car?"

"We sure did!" said Cousin S, then "and we have it already on the side of the road. Just drive around and get back on the freeway and we can put it back on the car." There was some conference between Cousin S and Dr. T, then Cousin S came back on. "We're going to try to stuff it in the back seat," she said, "but come around anyway". They already had the tree? They were going to stuff it in the back seat of Dr. T's Corolla?

I called 911 back and told them the tree was out of the road (thanks to Dr. T, who, with great derring do, ran across two lanes of freeway), and then we drove back around to pick it up. While we were standing on the side of the road (amazing how loud it is when you're not in a car), a police officer came up behind us. He took Ian's license and the car registration, and our insurance information (in case of any calls—sounds like one truck hit the tree before T reTREEved it), let us off with a warning (otherwise it would've been a $216 ticket), and told us that, had the situation been much worse and someone actually injured by the thing falling off our car, Ian would've been charged with a felony. I can totally understand why, but it would've been very bad for Ian's career as a government scientist.

ANYway. The cop suggested we carry the tree/drive our cars up the road a hundred yards or so where we could pull off at a wider shoulder. This we did, and we got the tree on and I drove uneventfully the rest of the way.

Oh, and Hoover somehow really scraped up a leg out at Mom's, and so he's Mister Cone Head right now because he won't stop licking. Poor silly pup.

Thursday, December 4, 2008


I have been trying not to expect much over the last six months. I have been focusing my energy on living each day as it comes, and not planning too strenuously for the future. I have been pleased—grateful—to have recovered as much as I have. I have loved the return of energy, which allows me to do so many things that bring me joy—both selfish, like the horseback riding and Gyrotonic, and generous, like making soup for Ian to take to school (he can't quite give up the weekly lunch ritual, even though he's no longer a student) because he was exhausted—and I wasn't!

I've sort of been expecting, though, based on my prior experiences, that I would go through chemo for some amount of time, the cancer would all disappear from my body, and I'd be in complete remission again, as I have been three times before. It may not work that way, however. Yes, my response to treatments heretofore has been very good. However, there is a chance that the cancer will stop responding, and may even start to grow again. This has happened to people. In that case, there are other chemotherapies, including oral ones which wouldn't involve needles at all—but it would definitely suck to have to look at it that way.

There is also a chance that my neuropathy (which seems to have stabilized in a state where I really don't notice it in my feet; my thumbs, first and middle fingers have some numb spots and some tingling; and my bowels seem to be unaffected) could get bad enough that it's necessary to take me off the chemo, even if I am still responding to it.

My bones will probably always bear the marks of the cancer, through scarring at the very least. And yes, those bone scars are weaker than bones normally are. I can help support my skeleton by having a lot of muscular strength, but jumping—on a horse that is—may not ever again be something I should do, not only because of the risk of breaking a bone if I fall and the time it would take to heal, but also because, if I do have a break, it will always, ever after, look suspicious on scans. I promised I would not jump for the time being. I can't promise I will never jump again.

And so, though I wasn't consciously yearning for my old life back, I was assuming—expecting—that it would come at some time, with only alterations so minor I maybe would'nt even have noticed them. Hmmm.

It's just another reminder to live fully in the moment—because now is all we ever have.

Yes, Yesterday’s Appointment Had Not Enough Information

I've had some pretty obvious psoas pain (what an awesome spelling!) in the lower left side of my back for the last couple weeks (haven't been able to get in to see Taya yet and have it fixed), and so when the resident said something yesterday about a new spot showing up in my bone scan, what had been an annoying but perfectly familiar pain in the ass became, for about 24 hours, the onset of a new outbreak of cancer.

It is not. According to Dr Specht, the CT is much more useful in a lot of ways than the bone scan in determining what's going on with the bones, and it continues to show lots of lesions, but they're all looking sclerotic these days (which means they're looking like scar tissue). My lungs still show some disease, but much, much less. Spots that had appeared on one adrenal gland and one ovary last spring have disappeared. And, yes, my brain lesions are doing better as well. Unfortunately, neither me nor my mom nor Ian could remember exactly what my new tumor marker number is (aren't three people between then supposed to remember the important information?), but it's somewhere in the 80s, which shows another drop.

Dr Specht thinks that the reason the bone scan showed new patches (a few—certainly more than the one mentioned yesterday) is because of the GCSF shots. The shots that I'm giving myself directly stimulate the bone marrow, and so frequently there is unusual activity in the bones, and it shows up on the scan. My descriptions of how I'm feeling and my other tests combine to make her think I'm in pretty good shape and not to worry.

It brings up an interesting question—did the resident yesterday act inappropriately by telling me the results of my tests, including that the bone scan showed new activity? I really don't know. Obviously, I left that appointment feeling nervous about my health, and now, given the right information, I no longer am. But he knew the results, so it seems appropriate that he share them. It might just be that a resident is still learning, and that in the future he'll know better how to recognize potentially frightening information, and collect more data before he speaks. I really don't know. As Ian pointed out, there is something particularly nice about being nervous before getting the good news—the news seems all the gooder. And, I was a little nervous. More so than I was all summer, actually.

My MUGA also looked good—heart's beating along normally.

I'll post this now, to set your minds at ease before I launch into my next topic . . .

Wednesday, December 3, 2008

Probably Not Enough Information

Today I had a brain MRI and met with Dr Jason after. My brain continues to improve—we were able to see the last scan and today's scan side by side, and even I, with my totally untrained eye, could tell that most of the spots looked better, none looked worse, and a couple were maybe staying the same, maybe very slightly better. There is still some concern about the lesion at the base of my cerebellum, simply because of its location and the fact that it hasn't gone away completely. But it, too, is smaller. My neurological tests were, as usual, easy to pass (although I could only walk five steps in a perfect row heel-to-toe and then I veered off a bit).

It occurred to me that I really had no idea what to expect about my brain mets—were they behaving the way they were supposed to? I mean, how long does it typically take for them to go away, if they are? So I asked Dr Jason where I stood on the statistical scale—knowing, of course, that the statistics meant nothing about me individually. He said that my response was better than average, taking into account the continuing regular shrinking.

We will test again in 2 to 2 ½ months—if, at some point, it becomes clear that the lesions aren't shrinking anymore, we want to know that as soon as possible because then the gamma knife might be a good thing to choose. But as long as things go as they are, we'll stay the course.

The thing that I probably don't have enough information about is this: since I've had a bunch of tests done in the last week, Dr Jason's resident checked out those scans as well as this morning's MRI, so that he could get a full picture of where I'm at. He said the CT looked good, looked "stable", I think, but I don't really know what that means. Things didn't start growing again, but they didn't shrink either? Because if that's the case, I'd rather not have "stable". Also, he said there was a new spot that showed up on my bone scan, on the low spine. Now, for about two weeks I've been having some left-side pelvis and low-back issues—a little bit of pain and stiffness, particularly when I first stand up, or after I've been walking around for a bit. It seems to have been improving over the last couple days, but it's still there.

We asked Dr Jason if he could elaborate—does it ever happen that lesions appear during treatment, on the way to complete disappearance? He hadn't looked at the scans, but suggested that the spot could be arthritis, and said that, when my next tumor-marker blood tests are available, that would help give us more information. If they're up from last time, that's not a good sign. If they're down again, though, it's likely the spot is something other than a new lesion. The part of the spine affected is the part, I believe, that I smashed a little tiny bit when I was thrown against the wall in a riding lesson several years ago—there is some possibility that it's showing up on a bone scan not because a new tumor has started up there, but because there's some remnant injury that was exacerbated by my recent activity. Anyway, Dr. Specht is the one who knows best, and I'll see her tomorrow afternoon.

One thought: If I were going to die from this cancer this time, wouldn't it have been much easier to do me in last summer? Certainly much more likely, statistically speaking.

On a lighter note, at a surreal confluence of sales (mark-down, additional percentage off in stores, additional percentage off that with a card sent to me in the mail) I bought four this-season items at J Crew today that would've been $193.05 but that I got for $42.31. Crazy.

A Lot Like Me

I was sitting in the blood draw waiting room yesterday morning when I heard a young voice bantering with the check-in guy. The girl had evidently left her green card behind, and they were joking about someone stealing it and pretending to be the girl so that she could get a blood draw instead. They laughed, then the guy asked her when her birthdate was, to look her up in the system. "November 5, 1980," she said.

November 5, 1980. Not only did the girl almost share my birthday, she was also only 28 (hence me calling her a girl—I mean, if I'm still a girl, anyone 8 years younger than me sure is.). And yet she seemed to be taking her situation in stride. I was proud of her.