Sunday, August 23, 2009


On Friday I had one of my regular brain MRIs, and, since our friend the neurosurgeon from Portland was going to be here, we got copies of two of my scans for him to look at (just for fun, not for diagnosis): the very first one, from 20 May 2008, and the one from Friday, 21 August 2009.

Basically, my response has been remarkable. Not only did the lesions all shrink significantly (some even disappearing or almost disappearing), I do not seem to have sustained much, if any, brain damage from the radiation. I guess that usually in scans like these doctors expect to see white patches around the ventricles in the center of the brain and also, perhaps, around the lesions themselves. This whiteness, our friend doctor explained, is destroyed capillaries, and is pretty much the same thing as what happens in a stroke. Old people also tend to have these white areas of capillary damage, and pretty much all brain radiation therapy patients do as well.

I do not.

Even Dr Jason, who is careful to remind me that we'll never really be out of the woods on the brain, simply because we can't treat or measure as much as we'd like to there, was impressed with, I guess, the healthiness of my brain in general. Sure, there are still some obvious irregularities (we counted 9), but I think it's safe to say I weathered the treatment with a minimum of trouble. Dr Jason even said something like "whatever you've got going on up there, it's good stuff." Friend doctor agrees.

Wednesday, August 12, 2009


I was at the vet today with Hoover, paying the extra $20 to work him in as an "urgent" care patient at the inconvenience of people who had planned ahead, and while I was waiting for him to be called, I paged through a monthly publication about pets and other animals. Several weeks (months?) ago, I was musing about the length of time I'd be in active cancer treatment, and comparing it to a gestation. Would it be, in fact, nine months like a human? Eleven like a horse? Up to two years, like a spiny dogfish? Well, it turns out that the gestation of a giraffe can last up to 14 months—the same as my treatment! Those of you who have been to my house, or seen me in a swimsuit, will understand that I am particularly happy with this coincidence.

As for Hoover, he is already better. He seems to have been stung several times about the face late last week, and although he doesn't have bumps on his nose anymore, both his ears have stayed plush and pillowy. Nice to pet, but probably a bit weird to wear on the head. He actually hasn't been bothered, which is why, after talking to someone at the vet last week, I didn't take him in immediately. But today, when his ears were still super soft and huggable, and we're leaving at 4am tomorrow morning for Mexico, and my mom is coming in to town specially to pick up the dogs and then take care of them, I thought I'd better be a responsible parent and get him checked out. He got a steroid shot and two Benadryl ("This dose might make him a bit lazy right after he takes it," the vet said. Uh, no. Hoover has not been noticeably lower energy than usual), and he'll have six more Benadryl over the next two days. His ears are, I'm just a tiny bit sorry to say, already leaner and more real doglike, than stuffed doglike. They're still very velvety.

Tuesday, August 11, 2009

The Numbers Game

First of all, since last I mentioned, I know of another pregnant person, and another new baby I didn't even know was on the way, already born. I haven't yet counted up how many that's been for the last year.

What I have counted is just how much time I've spent, since beginning my treatment at the beginning of May last year, in the clinic and driving to and from various appointments. I have included time at the SCCA, time at the UW hospital, time dealing with my eye, time visiting my Witch Doctor, and time with the craniosacral person. This is an estimate—I have not kept scientific track—but I think you'll find the numbers interesting nonetheless.

I have spent a total of 1,000 hours either in treatment, in appointments, or having scans. This works out to 25 weeks in a 40-hour-per-week job, or more than half a year working full time. On top of that, I have spent at least 72 hours on the road, traveling hither and thither to all my appointments, thus bringing my full-time job week count up to 27. I have been in treatment for 67 weeks now, though, so when I average 1072 over 67 weeks, my time spent in treatment drops to a mere 16 hours per week. This, of course, does not count the time spent recovering from infusions at home, which is not really measurable. At a 16-hour work week, I have driven (or been driven) for 4 ½ of my weeks.

Yeah, okay. So this really has been a significant proportion of my time.

This month, I am not jumping immediately into my only-every-three-weeks schedule, because there are still a variety of kinks to work out before that happens. So far, this is the only week I don't have anything medical going on. It's getting there, though.

Friday, August 7, 2009


I'm feeling quiet and thoughtful this afternoon.

I had an appointment this morning to talk to the gynecological oncologist and discuss getting my ovaries removed. Evidently, it's an easy procedure. They do it laparoscopically, it takes about an hour, I would be put under completely (to allow for the least tension in my guts), but it's still an outpatient surgery. I have never had abdominal surgery and my ovaries appear to be healthy, as well as small from having been suppressed for the last year, so I am a particularly routine case. Women who have had the surgery report about a week of feeling just kind of "ungh", then maybe one more week before they really feel like picking anything up (hear that, seventy-pound Spackle? You'll have to get yourself into the back of the car for a little bit), but there's no major pain, and, since I've already had them suppressed for the last 14 months or so, I should not feel any of the menopause symptoms as my body adjusts to the lack of ovaries, because, well, they're essentially gone already.

This is a good time to do the surgery (that is, after my next trip to Idaho at the end of September), particularly because I'm not on chemo, which can make healing take longer, and risks of infection higher. Since my ovaries respond well to medical suppression, which I could evidently be on indefinitely or until natural menopause takes over, there is no medically crucial reason to get them out. It seems like a good idea to keep the estrogen out of my system, though, and I could have another 20 years of it, so it's got to be one or the other.

The problem with medical suppression is partly that it's yet another drug—and this one an uncomfortable shot in the ass—but mostly it's that it's on a monthly schedule—meaning I'd have to be in the clinic every four weeks—and the Herceptin protocol I began as of yesterday is on a tri-weekly schedule, meaning that, with the combination, I would have to be at the clinic almost every week anyway. Years ago, Dr Livingston had me on a different suppression regimen, which I was able to get every three weeks. The one I'm on now, the pharmacists won't allow that. For all I know, they wouldn't allow it with Zoladex (the old one) now either.

I know this is surprising to you all, but I don't actually like hanging out at the clinic that much. I would like to stop going there so regularly. I used to complain about the 3-week bungee cord that kept me tied to Seattle. It wasn't a steel cord—I could stretch to a bit longer than 3 weeks every once in awhile. But my life was definitely in 3-week intervals. I would love to have that back for awhile. As long as Ian is on the ridiculous schedule of the American working stiff, with technically only two weeks off in a year (well, with comp time and whatnot he gets about 3), there's no need for me to have more than 3 weeks at a time.

None of this at all even approaches the true meaning of getting my ovaries out, though, which is that, once and for all, no turning back, I will lose all ability and all potential ability to reproduce.

This is proving to be surprisingly harder to deal with than I thought it would, particularly when last year it seemed I was a hair's breadth away from dying, and no one, NO ONE, would ever want me to try to get pregnant with my history. Logically, I don't even want children anymore. I don't think either Ian nor I would've survived the last year if we'd had to care for anything even a teensy amount more needy than a dog (and we had a lot of help with them), and kids are in a completely different universe of neediness. Even excluding my cancer past and the possibilities of future recurrences (which, of course, I can't after 10 years and four bouts), I'm 36 years old now, I'm set in my ways, and I like having the bulk of my time to call my own.

That said, without being a rabid "I will only find meaning in my life if I have children!" sort of person, I always assumed I would have kids. We picked out a name for a girl, and would occasionally discuss boys' names, without really reaching any sort of conclusions. In the past few years, I've thought a lot about parenting, and I still catch myself in certain situations thinking "Oh, I'll have to teach my kids about this!" or "I can't wait to share this place with my kids!" We even designed our future house with two kids' rooms. They are now extra guest rooms, because the fact is, there will always be children in our lives.

I have not been kidding (ha ha) about the baby boom in my friends' lives this year—there are, like, a dozen new babies who are going to come to "summer camp" at our place on Orcas to do all the things our cousins had to do on my family's farm—planting and weeding, feeding animals and cleaning stalls, riding, collecting eggs, splitting wood, canning and freezing vegetables, and whatever other country things we can think of to subject them to. I am confident that I will be a perfectly adequate parent figure in the lives of these children, the offspring of our extended circle of friends and family.

I am also confident that I will enjoy my time on the farm without the kids, as I enjoy my time here in the city. I truly do not feel that I am missing out on some great mystery, even though I know I am. My life is full.

Ian, bless him, would've liked a kid, but has never really cared if we have children.

All he wants is me.

Wednesday, August 5, 2009

Patently Normal

Well, as you readers know, I officially went off chemo last week, after 52 weeks in 14 months (minus several weeks for pneumonia and the two PET scans). Yes, I had ended Taxol, the more toxic and side-effecty of my medications, in March when my first PET was normal, but my tumor markers were still high (54, of a recommended high of 37), and so I continued with Navelbine as well as Herceptin. The Navelbine allowed my hair to start growing back, but I did still have to give myself shots (4 days a week instead of 6—a "sterile environment" in which to inject myself was pretty much in name only while we were camping) and take anti-nausea meds, and Bactrim to guard against recurrent pneumonia. My hair has been coming back in, and it's doing it pretty nicely except for a weird patch at the nape of my neck where it isn't growing at all, and some apparent male pattern baldness on the top (well, male pattern thinning). This is probably because of the full-brain radiation and the hair may never go back to my former thickness, but it probably will. But it will probably take time. In the meantime, I still have my wig, and evidently my mojo. Saturday night after attending a bachelorette party, I stopped for doughnuts at our local supermarket (they were awful, by the way), wearing my goin' out black dress, some red strappy patent sandals and the aforementioned wig, and as I was walking (okay, strutting, as one can't help doing in goin' out clothes) from the car into the store, a guy walking out with a bag of beer and chips said, in a totally nice, non-creepy way, "You are BEAUTIFUL!" I said "Thank you!", and thought "Little do you know, charming frat boy." My neuropathy has likewise resolved so my toes and fingers don't tingle anymore.

Anyway, I didn't have my tumor marker (test number CA27.29) result yet last week when I met with Dr Specht because of the usual delay (I have no idea why there is this delay, but I'm assuming it has something to do with having to mix the blood with something, or age it, or whatever), but since the CT and the PET were both non-alarming, we went ahead and stopped chemo completely, in a conversation that went something like this:

Dr Specht: "I'm guessing you wouldn't mind taking a break from chemo for awhile."

Me: "Uh, yeah. I wouldn't mind." <sniff>

Today, however, that CA27.29 was ready, and it was 35! 35!!!! That, if you will remember from all my discussions of 37 being the goal, is LOWER THAN THE UPPER END OF NORMAL. Clunky designation for a number, but I'll take it. It turns out that it really was only 1008 last May, and not 1015, as I've somehow recently believed. Trying to toot my own horn, I guess.

While I have your attention, I will also say that my left eye, which had showed minor issues, has completely resolved and is very healthy. My right eye, while I am still having to do drops every morning and evening (surprising how difficult it is to remember that), is definitely better. I am still seeing distortion from a cyst of liquid just under my focal center, but the cyst is shrinking.

Also, I missed a month of riding lessons in July (although added in the 8 days of trail riding), and so today's lesson allowed me to really see how totally buff I am after 4 hours of exercise a day while I was in Idaho. My lesson, starting and stopping and trotting and cantering and stopping and cantering and walking and trotting and cantering etc was easy. And sure, it was only 62 degrees today, but I wasn't even warm. I hope I can maintain this level of fitness for awhile without the 4 hours of hiking/riding every day. Because it's awesome.

Tuesday, August 4, 2009

Hot Stuff

A few months ago I noticed a change in my body temperature. That is, my temperature, when measured, was still the same—about 97 degrees—but my perception of how cold or warm I was had changed. When I was a kid, I didn't have much of a cold sense. The first sunny day at age 9, I'd be outside in a hand-me-down bikini, even though it was March and probably not quite 50 degrees. I wore shorts over long underwear to school during sleety Novembers, and was comfortable in jeans and a cotton sweatshirt in the snow. I was one of the people in shorts, bare legs sticking out from the tops of my ski boots, during the last couple weeks of ski school.

Then I went to Kenya for five months in 1993, and that all changed completely. When we first arrived in mile-high Nairobi in January of 1993, most of us pale white kids from Portland, Oregon, wore shorts and tank tops in the mid-70s temperatures. A week later, when we were on the coast in Mombasa where the mercury stood around 110, and the humidity was close to there, we almost expired from the heat. Three-fourths of the way through our trip we were doing heavy labor—hauling coral blocks and mixing cement with shovels from sand and lime, pulling water from wells, and constructing a school room in that same heat—and we found it relatively untaxing. By the time we were back in Nairobi for our final few days in country, we were all in jeans and jackets in the still 75 degree weather, and not any too warm.

For some reason, I never readjusted. Since 1993, I have been wearing sweaters starting at 70 degrees, scarves starting at 65, knit caps sometimes starting as warm as 75. A 68-degree room temperature makes me cold. It feels unfriendly, and I can't relax, even bundled up. The tip of my nose ices up and stays that way.

Until this year. Sometime this last winter, my sense of cold readjusted back to something more helpful for living in the northwest. I could be outside for more than 10 seconds without developing the shivers. My internal organs felt warm. Having our thermostat set at 72 degrees felt oppressive all of a sudden, instead of comforting. It may have had something to do with chemo, but I kind of doubt it. After all, I've been on chemo several times in the last 10 years with no obvious effect on how warm I feel (with the noted exception of hot flashes when my ovaries were being shut down).

I have to say, though, that our recent uncommonly hot weather has not made me all that uncomfortable, and has perhaps, in fact, set back my adjustment to our usual climate yet again. Today is cold—about 70 degrees outside right now as I type, at 1pm—and I am having trouble with it. I'm sitting in my 76-degree living room with my warm laptop on my lap, wearing long pants, wool clogs, and a fleece jacket. I am perfectly comfortable, if still slightly cold about the toes. My nose is fine.