Wednesday, November 10, 2010
Anyway, my MRI last week was stable (confirmed by Nurse Sarah on Saturday after the official report came in), and just now I received a copy of my blood test results from last week and it seems that Xeloda (or something, but likely Xeloda) is, in fact, doing its job: my tumor markers are 32, back in the normal range by 5 points, and down 8 points from last test!
Even though I wouldn't go back and change anything that's happened in my life, I'm not sure I'm yet to the point where I'd enthusiastically add another 11 1/2 years of the same sorts of experiences just for the soul growth, so I take all this as good news, and a blessing to go out and experience more of the world.
Thank you, Universe.
Tuesday, November 9, 2010
Today is my 38th birthday. On my 30th birthday, I announced that my 30s were not going to be about cancer. What I meant was that cancer was a thing of my 20s, and that I was done with it, and that the changing of the initial numeral in my age was somehow going to signify a change back to pre-cancer days.
What I discovered today is that, in fact, my 30s haven't been about cancer after all, although not in the way I intended.
This morning I had a therapy session, over the phone, lying on the couch in our living room, dogs snoring softly near my feet and a mug of coffee next to me on the table, and in the context of sharing with Nancy some of the compliments I've received in the last few years from various medical personnel, she asked me a question.
"You may have heard and deserved those beautiful things, but wouldn't you not have chosen this if you could go back?"
"Well, of course," I started to say, because who would choose this? Who would actively choose to fear for her life, to the point where each body twinge or tickle is ominously suspect? Where certain options that most adults can pick from aren't available? Where life is structured, unsought, into three-week segments? Where every day involves five different pill sessions, and not a single dose wrapped in tasty treats like Spackle gets?
But I paused, and really thought about it.
For a long time, I've recognized that I've appreciated the lessons I've learned from my cancer and been grateful for the knowledge, but even so . . . I would rather have come about that knowledge in a different way. But today, this morning, when asked if I'd go back and change things, I realized this:
I like the person I am now much more than I like the person I was before my cancer. I was more selfish, less empathetic, at times heartless and mean in my self-interest. I also put up with treatment that I didn't deserve, while occasionally treating others in ways they didn't deserve.
"I am a much better person now than I was before the cancer," I said to Nancy instead. "I like myself better. I like my life better! I get to do amazing things, with amazing people." I lay here on the couch and thought about that, what it meant. "I would not go back and change anything, after all," I said, surprised.
Last night I had my legs sugared again (preposterous practice), and I was chatting with my aesthetician about having just been in the Seychelles with my husband who has this ridiculously awesome job, and taking off in a couple days for Australia and New Zealand with a friend for horseback riding in the Southern Hemisphere. "I am so lucky!" I said. "I just . . . I'm so lucky. I have this great husband, these amazing opportunities, I feel like no one else in the world can possibly have such an awesome life!"
Rrrrrrrrip went the hair being yanked from my shin. "Honestly," I said, "I feel sorry for everyone else!"
DeAne burst out laughing. "You need to get that on a t-shirt," she said.
Tuesday, November 2, 2010
It's nice to know that, in the eight days that I have left before I head off to the other side of the world for my horse riding trip with my friend MS, I will not have to be freaking out about spots in my brain. I had an MRI this morning (the nurse who accessed my port said "Didn't I just see you in here???" Answer: of course.), and everything appears to be stable. Not only that, but Dr Jason admitted that he was expecting a different outcome, i.e. the spot from last time would have been significantly larger and/or something else would've shown up, all of which would've meant changing (definitely) 1) my treatments, (possibly) 2) my travel schedule, (undeniably) 3) my peace of mind for the next month. But, instead, Stability! And so I get to travel with the relief of that.
Also, saw my eye doc yesterday, and the fluid mass that's distorting the vision in my right eye is reducing, so evidently the 30-second laser treatment helped!
And, today it's beautiful fall sunny outside, and so I'm heading out for a couple hours to attempt a fix on the yard. Which means I will pull out everything that died over the summer.
Thursday, September 30, 2010
Tuesday, September 28, 2010
I had my late-evening MRI last week, and it turned out to be pretty much late-night by the time I was done—I guess the whole day had been one urgency after another at the hospital, and even the people who were inpatients were getting scanned late. So instead of getting started at 8:00pm I got started after 8:30pm, and the scan was long—maybe 1 ½ hours. I never really remember how long a spinal cord scan is, but it naturally has to be long, because the spinal cord is long, as almost all of us can personally attest; at least, long compared to the brain. Anyway, Ian had driven me to the hospital in an act of very sweet moral support and, at my suggestion, stayed in the waiting room to put in some of his work while I put in some of mine—instead of driving another 5 minutes to his office. I had imagined that it wouldn't be worth his time, that I'd be in and out in just over an hour. Ha ha. Aside from running late, though, the night was pretty uneventful.
The next morning, Wednesday, Ian put in a call to Nurse Sarah to let her know the scan had taken place, and then Thursday morning we got up early and left for a fantastic wedding weekend on Orcas Island, where we didn't have cell coverage or internet and were forced, instead, to hang out with dear friends and have long walks and hikes and rock skipping (or just increasingly frustrating rock throwing, if you're me) sessions, drinks by fireplaces, dancing and barbecue and festal breakfasts, and Ian's second brilliantly performed marriage ceremony. Really, the man's a born secular minister. Keeping in mind my aftermaths from Austin, I didn't abuse myself quite so flagrantly with the Jack Daniels as I could've, and I still had a great time, and I came home tired but well. I thought about my MRI once, but never was I in any position to try and call home and see if messages had been left, and indeed, none had.
Nurse Sarah called yesterday with the news that my MRI looked A-OK. Which is to say, just like the last one, so some evidence of stuff in bones, but perfectly clear spinal cord fluid, so nothing in particular to watch out for whilst traveling in tropical paradises. And today, healthy me went rock climbing at Stone Gardens, and actually climbed a V-2, and it's only my 3rd day (sort of) back!
Strong. Healthy. Well.
Note: I began writing this post about 10 days ago, but the message is still valid so here I go completing it, and sending it off anyway.
Austin was, as has been my experience during my previous two visits, a hedonistic smorgasbord of pleasures to suit every mood. This time, mid September instead of February or May, was also HOT-HOT-HOT, and HUMID-HUMID-HUMID-HUMID, which really only got in the way of the pleasure of sleep, because the air conditioner was on 24/7 struggling to keep the house as cool as 80 degrees, which meant we Seattleites were a long way from taking advantage of the lovely duvet, and the fan droned in our ears all night. Nevertheless, the mattress itself was very comfortable, and Ian and I seemed to take turns sleeping through the night and getting up early. Actually, what I pretty much did was go to bed on Seattle time and wake up on Austin time, which meant I wasn't getting my usual 9 ½ hours. Nevertheless, it is a home away from home, and whoever was up first made extra-strong coffee and went to lounge in a living room eerily similar to ours (the built-in bookcases flanking the brick fireplace, the white-painted mantel, even many of the same books).
Our friends in Austin are the kind of people who go out for a barbecue lunch at the Salt Lick in Driftwood, TX ("You can smell our pits for miles"), and revel messily in smoky, spicy meat . . . and then hours later, when we're coming out of our food stupors and a supper of salad and freshly made cornbread is suggested, are just as happy to follow my suggestion instead—and go to Amy's Ice Creams for Milkshake Dinner. OMG, that dark chocolate malt was the best thing ever. And the secondary caffeine in the chocolate kept me up for several hours.
And the next day—I won't lie to you—I did have some gastrointestinal issues probably related to the flagrant disregard of good alimentary sense the day before. And I'll probably do it again someday.
Other pleasures included a 5 ½-month-old baby who is just learning to mimic others and be aware of food, beginning to watch all us adults carry things from our plates and put them into our mouths. At the Salt Lick, she got a bit of a bare toe in some barbecue sauce—it can't have been difficult there—and the next thing we knew, she was doubled over in her Bumbo chair sucking her toes. She continued to suck her toes at random intervals—hoping beyond hope for more of that delectable flavor, I assume—for the remainder of our stay in Austin. It led to several—well, at least two—adults attempting the same thing: both JP and I successfully brought our toes to our mouths. We did not look as cute in the posture. Baby DP is also trying out her language range with quite successful production of alveolar clicks, along with the more expected—for English speakers rather than Xhosa—MAMAMAMAs and high-pitched squeaks and grunts. She is a happy, healthy, and easy-going baby, and Ian and I had the pleasure of a couple hours of her all to ourselves whilst both her parents went about other things.
We also had outings to swim—both in a pool owned by a friend, and in a municipal pool, and on our last day, before our flight back home, we went to a park and played Frisbee and then croquet, with the best croquet set ever created, with a picnic of leftover Tex-Mex from the night before, followed by a giant pitcher of Pimms back at home before getting on the plane back to Seattle.
What all of this hedonistic joy led to for me was a giant crash, skidding into home on my head, which promptly issued a migraine which followed the latest trend of turning into nausea and a massive headache. Sigh. Nevertheless, I could hardly be surprised—if you want the sweeping, vertiginous heights, you must be prepared to balance things out with the crashing, excruciating depths. What I had going for me was an already pre-scheduled massage with the peerless Luata.
Luata pointed out that the Universe does seem to look out for me, as I was there in her office, prepared to have C1 put back in place in my neck mere hours after it had gone on walkabout, and I mused to her about the causal relationship in my migraines. "What do you mean?" she asked.
"Well," I said, "do I get a migraine because my vertebra has moved out of position? Or does my vertebra somehow move out of position because I'm having the migraine?"
Luata was thoughtful for a minute, then she asked me a question. "When you go to the symphony, and you hear the beautiful music sweeping over you, what instrument is it that is the cause of that beauty?" She paused for me to think about it. "Exactly," she said, "there isn't just one instrument. It all plays together to make that beautiful experience. The body is just like that. We can't say what one thing causes a migraine, or anything else—it doesn't work that way."
It all plays together.
Friday, September 10, 2010
I had an MRI earlier this week, the first since June. I think three months was maybe the outside Dr Jason wanted to wait, and I kept that in mind and called to make sure I would get something scheduled, because as we know my life over the next few months is taking place away from here at least as much as it's taking place here. At my last visit with Dr Specht, she'd mentioned that she and Dr Jason hadn't been talking about me much recently (always a good sign for me, but it meant trouble for somebody else), but as much as I wanted to just run with it and let them remember me sometime, it seemed to be a good idea to take it upon myself to get on the schedule.
Well, I got on the schedule at 7:30 in the morning on Tuesday—which is pretty much a guarantee that I'll have no conflicts, provided I'm in town—and after the usual 20+ minutes of sound-battered somnolence in the MRI tube, I headed over into the examining room to meet with Nurse Sarah and Dr Jason.
I passed all my neurological tests with flying colors—I am incredibly strong, and balanced, and clear-headed—and I've been feeling really well lately (aside from a pudgy ring finger, but that's rather inconsequential in the scheme of things—and, in fact, not being able to get my wedding rings off really shouldn't make me feel panicky when Ian is so A W E S O M E) . . . and yet, when I went with Dr Jason to look at my scan, he pointed out a new spot in my brain that first appeared in June and seems to have not quite doubled in size since then. It's still very small—smaller than a pencil eraser; larger than the nib of a pen—but my brain at the moment isn't showing any signs of irritation at it (that's up to my consciousness, I guess), and so we're going to watch and wait. Because I'm planning a trip to Africa in a month, I am going to be having a spinal cord MRI (this one scheduled at 8pm, which seems sort of pleasingly atypical for scans) to make sure I'm not likely to suddenly lose the function of my legs whilst climbing one of the Seychelles' granite mountains—a precaution taken at this stage only because of the travel, therefore, I say, a small price to pay. There are no current plans to deal with the brain spot—it's too small, and too single, to cause much concern (on the part of Dr Jason) at the moment.
Yesterday during my extra long infusion, however, I got my CA 27 tumor marker score back and I'm now better than normal—40, when the top score really should be only 37, up from 30 in May. From my experience with my own body and this particular test, anything over 25 or 6 means scan-readable cancer in my body somewhere, and so 40 presumably means scan-readable cancer in my body in more somewheres than just one.
This slightly elevated tumor marker, much lower than the 1009 original from 2008, has been slowly rising since going on the Xeloda, which is a chemotherapy that is supposed to be slowing it down—ideally reducing it back to normal. This reversal of hope and expectation is not something I want to see, and herein lies my opportunity.
My first response to these bits of news is, of course, entirely human, and entirely knee-jerk (although I think various chemos in my past have long-since destroyed that actual physical reflex in me). I am angry, afraid, frustrated, annoyed, and, damn it, PISSED OFF that I can't just go to a tropical paradise with only the glowing equatorial sun hanging over my head. But no, I go with my mortality hanging over my head.
On the other hand, as Ian points out, and as I know from personal experience, I am one of the strongest, fittest, wellest, people I know—and the only reason I don't feel that way right now is the fear. And fear is, in fact, something I can, theoretically, control.
So, what if I get over my knee-jerk reactions and, instead, learn to blow the fear off? The thing about cancer for me is that it's going to be perpetual and endless, and if I don't want to crash every time a scan implies activity, I'm going to have to figure out a different way to process my life. A more thoughtful way, perhaps. I'm going to have to learn to focus on the certainties—that I am strong and talented and smart and, yes, healthy—and let the uncertainties take the bit parts, the cameos, the walk-ons, that they deserve in this drama of my life.
I have an idea that it's going to take me some time to master this new art—of brushing the fears aside and focusing on the obvious truths of how I live, how I LIVE, but fortunately the cancer seems to be awarding me endless opportunities to practice.
So, Thank you, Cancer. In your face.
Tuesday, August 24, 2010
I'm in Idaho right now and, true to form, Spackle has again been somewhat mirroring my own medical issues—in this case the procedure even had the same name. My lumpectomy was 11 years ago, of course, and took out a malignant tumor and his was yesterday and took out two benign cysts, but nevertheless. Like mother, like dog.
Read about it here.
Tuesday, August 17, 2010
So, travel and cancer, cancer and travel. Travel, for the next several months, really seems to be taking the upper hand. We've got a couple of local weekends away coming up—Ian to a bachelor party in the woods this weekend, and me to Idaho for an almost-week of summer riding and helping out while K&A are home. I'm leaving the dogs when I come back, at Doggy Heaven on Earth II (DHoEI being Mom and Marsh's place, OF COURSE), where K&A have kindly agreed to look after them whilst Ian and I fulfill several non-dog-friendly weekends.
The first weekend back from Idaho/the woods we're going to Orcas to spray for tansy ragwort in our pasture—a noxious weed that kills livestock but enjoys boundless growth itself. It can be eradicated by being dug up by the roots and burned, but the ground is hard and dry now, and this would be backbreaking work. An island neighbor, who has mowed and hayed much of our land for the last couple years (charging us nothing and taking the hay—a perfect trade, from our perspective), discovered the infestation and is going to help us kill it. She explained that she tries to lead a mostly organic life herself and would, on her own place, prefer to catch tansy in the spring and dig it up—and indeed, she did try to dig up a lot of ours, for hours—but she also said that there are times when it's better to use chemicals. I explained that I understand completely—sometimes, the organic, natural way is best and works well—sometimes, however, you need chemotherapy. She laughed with me—that's exactly right. So the last weekend this month we're going up to Orcas to camp and administer chemotherapy to our giant pasture (if there's an infestation near the campsite, we'll do that part last, after we've packed up and are ready for home); we didn't think it would be such a good idea to administer chemotherapy to our dogs.
The following weekend we'll be on Mt Rainier attending a wedding of dear friends; the following weekend we're going to Austin for four nights, to meet a baby who was born in April. I believe we have nothing planned but a big holing-up-at-home-and-hiding-from-the-world crash the following weekend . . . oops--and an important birthday celebration . . . and the weekend after that we're spending 3 nights on Orcas, this time for a wedding of more dear friends. That takes us through September.
The first weekend in October I'm going back to Idaho to resume command/responsibility for my dogs, and then K&A are taking off on a fall tour of NYC and Europe, and so I'll remain in Idaho until 14 Oct. I would've stayed longer, because K&A will be gone longer, but THIS JUST IN: IAN'S JOB TOTALLY ROCKS. He's been invited to some sort of conference or something in the Seychelles. AND WE ARE GOING. The plan right now is to leave Idaho on 14 Oct at 5am, stop at Doggy Heaven on Earth I and leave the dogs and hitch a ride to the airport, meet Ian there, and then be gone until the 29th. I'm sure none of you are following my Herceptin schedule quite so closely as I do, but this is going to interfere. HA! Travel 1, Cancer 0.
Then, of course, is a trip you've heard about: 10 Nov to 2 Dec in Australia and New Zealand (should be able to work cancer around that trip, with a little poking and prodding of schedules).
In January, we're spending a week in a beach house on the Kona Coast with Ian's family, and yesterday he was invited to attend a conference in Honolulu in February. This time, I told him he could go without me.
And then, in March, we're going to Kenya (which will also interfere with Herceptin: Travel 2, Cancer 0).
Bring it on!
Monday, August 16, 2010
I had an eye doctor appointment today, which is generally mildly uncomfortable, because I usually get my eye dilated—just the right one—which throws off my stomach just a little, in addition to making me look alarmingly crazed to the casual observer. My stomach wasn't so bad today because I'd just had my morning Xeloda, and my morning Compazine. The Compazine, much to my pleasure, acted as a catch-all and I didn't get sick.
I've been noticing lately that my eyesight hasn't been changing all that much—i.e. is not getting better. With all the drops and the needle to the eyeball last year, the fluid issue should've been dying down by now, and it's not. And so I got to experience again the test where they can determine where, in my eyeball, my capillaries are leaking, because they clearly are.
This test, given while my eye is still dilated and therefore most likely to hurt when klieg lights are shined in it, involves taking some brilliantly flashing pictures while I'm doing my best to stare at a blinking red light with my left eye—then they inject me with a fluorescent yellow dye (in my arm) and immediately take the pictures again and then they wait 15 seconds and take them again. And then they wait a minute and take them again. At this point, I'm sweating fluorescent yellow like those disgusting Gatorade ads.
Anyway, Dr Meyers-Powell, who sees a lot of patients in a day and is good at making quick decisions, thought that the best thing for me would be a minor laser surgery that I could have right then, or Thursday or Friday. Well, I was there already, my eye was dilated and I was uncomfortable already, and Thursday is already pretty full of clinic, and Friday is riding day and I'm obviously NOT missing that, and I, too, am good at making quick decisions and so I said yes.
Ten minutes later I was sitting with my chin in yet another cup and my forehead pressed against yet another curved bar, my eyes bugged open as wide as I could hold them, getting an EVEN MORE INTENSE light shot into my eye.
It feels a bit hot to me right now, the right eye—but then, I am hypersensitive to any unusual body sensation and so, I'm guessing it's to be expected.
Anyway, I have renewed hope that I will, someday, be able to see normally from this eye again.
Whatever normal means.
Monday, August 2, 2010
I received an email from a dear aunt the other day, who had just spent much time catching up on my blog. "Calin," she wrote to me, "How do you have time for cancer with all the travel you're doing?"
I mean, it really got me thinking about the nature of busy-ness in our lives, and what we make time for, and what we don't, and how much that really affects the experiences and events that we take part in. Cancer certainly has not presented itself as a choice—something that I can consider and, then, when I've had a few days to think about it, either accept it or reject it—it does seem to have been thrust upon me. But maybe there's a level of life and living that I haven't figured out how to reach yet (and maybe can't in human form), where all experiences are choices? Maybe, in fact, I already have chosen cancer, and travel, and the only reason I have time for both is that I've really planned it that way.
Back in the metalife, before I incarnated here to this base reality of incomparable physical experiences (if you believe in such things)—joys and vertigos and agonies, exhaustion and supreme, utter peace and energy and vigor, maybe I chose cancer and travel as the two best ways to live my life to its extremes. And so I have time, because there is time. There's always time.
But then again, sometimes there's time because I refuse to let an schedule—self-imposed or externally-imposed—completely dictate my personal events. For the most part with my travel, I do hold myself to the three-week cycle that my Herceptin schedule has me on . . . but not all the time. For our trip to Kenya next spring, I am going to miss an infusion. And it's not going to kill me. And it's going to allow me to see Giraffes! With their heads in my bedroom window! And the Indian Ocean and mangrove forests! And misty mountains covered with tea plants!
And so, I guess the answer is, I have the time whenever I want it, or whenever I need it. The jigsaw puzzle of my hours might be more complicated than some, with 1,000 pieces instead of 350, or the handmade, Stave version of a puzzle with lots of gaps cut into the intricate connections, just in case the classic approach of things fitting tightly together is somehow unsatisfying.
My life is certainly not unsatisfying.
Tuesday, July 27, 2010
My right eye has been finking me for about a year and a half now, because of the Whole Brain Radiation. Even though I had a fraction of the usual dose, I developed one of the possible side effects. I have to say that I am endlessly grateful that, heretofore, I seem to have held on to my smarts, including my short-term memory—the loss or waning of which is another possible side effect. My eyes did not fare so well, unfortunately. My left eye is mostly fine, mostly just nearsighted and astigmatized as before. I do have a small bit of cataract in it as well, but I usually don't notice it, as it's not in the center of my vision. I have not been able to figure out why I do sometimes notice it . . . really, it's quite strange.
My right eye, however, maintained its nearsightedness and astigmatism and added both fluid under the cornea—near the center of my focal point so therefore visible all the time as a distortion of any line I look at—any thing I look at; and a slowly growing cataract that is also virtually in the center of my lens. Combined, these issues in the right eye frequently send me unexpected data about the world around me.
Because my left eye is corrected—ignoring the tiny cataract—to 20/20 vision, and my right eye is corrected—because of the fluid and cataract—to about 20/40 or 50 (keep in mind that this is tested reading an eye chart, which is not the same as using the eye in the real world, and that changing my glasses prescription at this point, while prescription drops are slowly changing things would be . . . pointless)—I can see remarkably competently for every task I've tried to undertake, from driving to reading to riding to cooking to threading a sewing machine needle. The left eye gives me clarity; the right eye rounds out the dimensions into the three we typically see.
Nevertheless, we see in stereo, and when I happen to catch a glimpse of something obliquely with only my right eye, I usually have a moment of shock—that the woman walking around the corner is missing an eye and part of her nose. Or the seaplane coming in to land on Lake Union is miraculously aloft on only one wing. Or the photo on my friend's wall is of her as a child next to a headless baby, presumably the remains of her brother. As you might imagine, it can be alarming.
My brain knows that, for the most part, people tend to have two eyes and a nose. Planes landing calmly and smoothly tend to have two wings. Babies in pictures tend to have heads. And so, after the initial nanosecond hiccup, I'm back on track and observing the world as I learned to as a toddler.
A tiny part of me continues to wonder, though, if maybe I'm somehow seeing something more real now. Who's to say that what we learned back then was the absolute truth?
Saturday, July 24, 2010
I've been wondering for a while if I really am getting any benefit, anymore, from my morning 0.5mg of Clonazepam, the antianxiety drug I've been taking daily. It's such a baby dose, and I've been rebuilding my adrenals (their exhaustion being the most likely direct cause of my anxiety over the last year or so), and so this morning I thought, since I didn't have anything major planned for the day, that I'd just not take it and see what happened.
I went from feeling my usual morning self—pretty normal, alert—you know, thinking about what I was going to do with my day—to, within a couple hours, feeling really sick to my stomach, exhausted, disconnected, and able only to sit very still and focus on my Saturday NY Times crossword puzzle (which, even in my state of physical distress, I have still almost completed . . . yes, I'm bragging, execrable habit . . .). In part, I've just started Week 2 of my cycle of chemo, but that can only account for mild nausea and attendant mild disconnectedness. There was definitely more going on with me today, which I'm assuming was a combination of simple withdrawal, and the more complex physical/emotional need for the medication.
And so, I took my Clonazepam, and after about 20 minutes, had recovered enough to write this post. A repeat experiment will be put off for a time.
Wednesday, July 21, 2010
This is really a post that belongs on both The
Dilettante Traveler and I Thought I Was Done With This. I've been thinking a lot recently about the things that I like to do with my time, with my life. I like the horses, of course. My 20-year high school reunion was just last weekend and people I haven't seen in 20 years asked what I was up to and I said horseback riding and they nodded knowingly. "You always were into horses," they said. Which is a little weird, I suppose, since my being "into" horses has never involved the insane show circuit . . . it was, I have thought, a much more low-key "into horses" . . . but nevertheless, it's true. I am and I have been, into horses.
I like the fiber arts, if you will. Knitting hats and sweaters, most recently getting myself into the Fair Isle designs—which take a lot more time than the simple hats I've been doing for the past several years. I've also been sewing a lot—glitter bags for everyone I can think of (if I haven't thought of you and you'd like one, drop me a line)—and recently, crazy-patterned pillowcases because we've started using more than two pillows on our bed—hence, more than the number of cases that came with our sheet sets. Also, we like to have our pillowcases hold our down pillows together a bit—and so we only want them to be 18 inches wide. I've already had to alter most of our existing cases. I also bought some fabric just the other day to make some scrub-like lounge pants—much prettier, of course, than scrubs (particularly Dr Jason's black, Grim Reaper ones), but the same basic, loose-fitting drawstring design.
I've been finding it satisfying to keep the yard moderately tidy as well; it's been quite the season for lawn growth—particularly if your lawn consists primarily of dandelions—and twice I've had to do an entire sweep with the weedwacker before I could even begin to make any headway with our rotary mower.
As for the less domestic pleasures, well, travel. What can I say—I find it exhilarating to visit new cultures and new locations. The ability to fly around the world, observing people in all their natural habitats, and immersing myself in those habitats—I love that. And so, while I've been reveling in domesticity, I've also been making plans for World Domination. To that end, friend MS and I (you may remember her from the most recent day of lostness in Jerome Creek) are going to be taking an Equitours trip in Australia in November—horseback riding (with guides!) for a week from inn to inn along the Sunshine Coast. We're then going to pop over to New Zealand's South Island and add some more rides—in this case following in the footsteps of Strider and the Hobbits— and visit my friend C in Wellington (and, in fact, actually get to visit the place where I "moved" in 2007 when Ian and I sold our cars and rented our house and left town for several months). And I can't help being excited about this part: it will be my 6th continent within a year. I love my life.
And then, in April, KENYA! Ian and I have been wanting to go back to Africa for years—well, East Africa, since Cabo Verde last January certainly counts as Africa—and we've managed to finagle an unbelievable plane trip: two BA tickets in Club World, Seattle to Nairobi and back, for the price of only one set of airline miles. I tell you, if you can figure out how to work the system, the system REALLY works for you.
So . . . I'm happy. I'm still feeling a little anxiety associated with things that I commit to doing for other people . . . or even mention I may be interested in thinking about doing for other people (the problem seems to be my personal definition of "commitment," rather than any external expectations). I'm slowly, as well, figuring out the benefits of a life of scheduled days off (I have chosen to "work through" my day off this week, in the interests of, well, horses), and I'm learning to stop feeling guilty about enjoying the path I am so fortunate to have been given.
Thursday, July 15, 2010
My brother once informed my mother that no news was never good news—that people want to share good news and so they tell it—but I am here to say that my two-week radio silence and generally sparse recent posting is because I have been learning to employ my 80% rule, and I've pretty much been enjoying myself in this nascent Seattle summer.
The Xeloda, since my ER trip in June, hasn't been finking me very much. I feel perhaps a bit more fatigue (although not consistently, and hardly ever when I'm doing something really fun) and a little nausea (which is dealt with alacritously by Compazine). My palms and soles are slightly sensitive during the weeks that I'm taking the pills, but not so much on the weeks off. I have not lost any hair (I'm not expecting to). My mouth is not, in fact, developing sores; at least not yet. I am not noticeably more prone to sunburn than usual, which is not very. It's not the end of the world to drive to Capitol Hill once every three weeks. This evening, in fact, Ian and I turned it into a date complete with dinner at the Kingfish and two dog walks.
I did just spend last weekend in New York City, mostly the Brooklyn part, and I suppose a mention of that belongs in DT, but I'm not going to write anything there. Suffice it to say that 7-year-olds can be unbelievably bossy . . . perhaps because it turns out that 30-somethings are unbelievably (embarrassingly) easy to boss.
Anyway, temperatures at least in the 70s are here, and life—and news—is good.
Wednesday, June 30, 2010
Okay, the last time I wrote was just after my trip to the ER a couple weeks ago. There are a variety of reasons I experienced multiple aura and speech issues and intense pain with the migraine that hung out with me for about 36 hours, from what I can tell. First of all, it was 8 days after I'd begun my new chemotherapy. Second, it was 8 days after I'd stopped with the drug, Femara, that was taking the remaining estrogen out of my body, so I was beginning to have some slight hormonal issues again. Third, I've been eating very little sugar for most of the last few months, working on reducing my anxiety and some unexplained itchiness on my lower legs (it seems to be working), and the weekend before the ER experience we'd been to a wedding in Bellingham which, of course, involved lots of sweets, some alcohol, multiple events mostly with strangers, a lot of time in the car, and a night in a hotel with dogs—none of which are terribly relaxing things, although the wedding was beautiful and the dogs comported themselves reasonably well. I would say that the Rodeway Inn, with its use of quirky spelling to draw you in, is slightly less nice than the La Quinta (which draws you in with the hint of foreign Country Estate) where we've stayed before, but it was perfectly adequate and no one batted an eye at two 80-pound Labs pulling us joyously through the lobby. They love staying in hotels. And fourth, I'd spent the previous week working my ass off in the yard and around the house—six or more hours every day lifting and weedwhacking and mowing and bending and taking long dog walks and having a pretty intense jump lesson at the end of it all. Any number of these things could have thrown my alignment off so that C1—the first neck vertebra—decided to search for a better life and began a migration east, thus setting in motion the searing pain. I kept thinking to myself throughout the week: "Well, I feel okay today, so I may as well get as much done as I possibly can."
Well. I did get a lot done. But it took me all the following week to recover from my labors and the excruciating subsequent discomfort.
Several years ago, my mother told me of a tradition from, oh, somewhere in China, or maybe just somewhere in Asia (Calin wrote with typical American cultural sensitivity), where the secret to maintaining a healthy weight was to "eat until 80% full." This makes a lot of sense, because your body has the ability to take in food much faster than it can process it, and by the time you're feeling 100% full, you've got more than you actually need—and your body hasn't had a chance to tell you that. And so, eat to 80% full.
I realized last week that the same advice could—and at least in the case of the Mathewsons, from what I can tell, SHOULD—be applied to work. Eat until 80% full, work until 80% tired.
Ian is very good at working until 80% tired, then taking off to lie on the couch and read something interesting about the world. I am very good at eating until 80% full and thus maintaining a relatively stable size/weight over time. Our new goal is to share our complementary skills with each other, and each have a better life for the experience.
All that being said, our meeting with Dr Specht went very well yesterday. There were no scans to report on aside from my last MRI which was stable(=good); the meeting was mostly to see how I was tolerating the Xeloda. Aside from my melodramatic couple of days, it's been pretty much as expected: slight sensitivity in palms of hands and soles of feet (why is that?), a slight awareness of the drug starting its work about 5 minutes after I take it, mild nausea and anxiety about 1½ hours after, slight fatigue but nothing anyone else would notice. We're not really going to talk about adding Cytoxan at this time—I wanted to get through a full cycle of Xeloda without hitting the emergency room—and this may be all I need at the moment anyway.
Tuesday, June 15, 2010
Yesterday morning I got up and came out to the kitchen a bit after 8 am, ready to have some morning coffee and start the day. We've been offered this free mortgage refinance through our bank, which will lower our interest rate and therefore our monthly payments (the savings works out to be pretty much the exact amount I owe as my new co-pay for Xeloda, so that's something), and so I was going through the paperwork to make sure I had everything in order before sending off a fax. I eventually noticed the telltale sign (or, maybe more exactly in this case, the "tell-void" sign) of impending migraine activity. Well, whatever. I've had them before, and even though it's been several months now since the last one, I've always assumed I'll have them again. I went about my business preparing my protein shake (frozen banana, two other fruits, yoghurt, peanut butter, whey powder, rice milk, YUM) while the neurological issue progressed, then I had my shake, noticed the language difficulty for a short time, some mild buzzing along my right hand, and whatever. Went on with my day.
Well, not long after this, I noticed the blind spot building again. And with it some headache. I tried to lie on the couch and just doze, and I think I was able to achieve some relief. Then Hoover came and got me and insisted on lunch, so I woke up, and I was in the middle of one of the difficult speech times, and by this time my head was THROBBING. I have been extraordinarily lucky and have not had much pain ever, but my luck was clearly on vacation somewhere else yesterday. I fed the dogs, whimpering a little (me, not them), and, strangely cold, dragged myself into the guest room and curled up in the comforter there. The third time the dogs came in to get me to play with them—they'd had a boring morning of it since dad left—I woke up in the middle of one of the language issues again and tried to figure out how to reach Ian. I could remember the first six digits of his phone—206-321—but couldn't get beyond that. I went to my computer and opened an email to him, but I couldn't write anything longer than "come home. Help me." I eventually got an email off, but then I also recognized his number on our caller ID and was able to reach him by phone. It was, I thought, time for another visit to the emergency room.
I mean, one migraine is one thing. But already 3, the pain, and the nausea (which I treated Ian to—obliquely, on the other side of the closed bathroom door—soon after he arrived home), and the fact that I'd just begun a new chemo 8 days before, seemed like reasons enough to let a professional look at me.
I was whisked in right away, courtesy of "the worst headache I've ever experienced" and my history, given four heated blankets, then taken off for a blood draw and a CT. Dr Jason stopped by to say hi, as did an ER resident, and then the ER chief.
The upshot? Migraine. Dr Jason said the CT looked fine. The resident did my habitual neurological test, including the muscle resistance part where I inadvertently pushed him around with my massive strength, and the mental part where I identified not only the day and date, but the relatively obscure national holiday. "What's the day today?" asked Dr L. "June 14, 2010," I said. "It's Flag Day."
And the ER chief, bless him, said "All those symptoms you've experienced are very common migraine symptoms. Nevertheless, good for you got coming in the have it all checked out."
We had pizza for dinner, and just after 9 pm I noticed the 4th episode of the day starting up. No matter—I had an Ativan and 2 extra-strength Tylenols, went to bed and slept like a baby. Or, rather, from what I hear from my friends with babies, slept like an exhausted adult whose kid is staying over at Grammy's for the night. Or the summer.
Saturday, June 5, 2010
The Xeloda, which is on a three-week cycle, costs $3,000 per cycle. I pay a $50 co-pay. I have to pick it up per cycle; they won't even give me enough for two cycles. This makes it cost $52,000 per year, basically Ian's salary. What I pay is $866 for the year.
Friday, June 4, 2010
In the, yes, baroque way of these things, I will be picking up my Xeloda prescription from the Capitol Hill branch of Bioscrip. This is not because it is convenient for me and I would much rather do it this way; it is that Bioscrip will not mail me this particular prescription. I have to pick it up. This information was received from two different SCCA employees this morning, a nurse and a pharmacist, after each spent several hours dealing with the rat's nest of phone trees and supervisors.
However, I thumb my nose at YOU, Bioscrip and Uniform, because you have inadvertently given me exactly what I want.
Thursday, June 3, 2010
Okay. So, my PET/CT showed that I stayed pretty much the same. Of the three spots of "marginal uptake" from the previous PET/CT, one was completely gone, one looked to be exactly the same, and the third seemed to be ever so slightly larger. I feel like the results pretty well mirrored the effort—very intense for some time, then a bit of petering out of commitment.
Since they hadn't gone away completely (note: Dr Specht was, I think, utterly amazed that they hadn't taken over the world), I decided to opt for the chemo choice, which in this case is going to be the drug Xeloda, which I will take from home, three tablets in the morning and three in the evening for 14 days on, then 7 days off, in a 3-week cycle.
That is, I will take it from home if I can ever get the prescription filled.
Like Neupogen, the hilariously expensive shots I had the pleasure of self-administering, Xeloda does not have a generic form, and is itself hilariously expensive (I'll get back to you with the number when I see it). This means that Uniform, our otherwise generous and supportive insurance company, insists for some convoluted reason that I order this medication only through Bioscrip, a mail-order pharmacy. It takes about 10 days for a prescription to clear through the mail-order pharmacy's trolls, and in the meantime I am sitting here without it. That's not all, however: Bioscrip actually has a Seattle store, on Capitol Hill by the hospitals. BUT THEY WON'T LET YOU USE IT.
There is a baroque process involving lots of phone calls to lots of increasingly superior workers whereby Uniform will allow a one-time "work around" that enables you to fill your prescription at a pharmacy convenient to you, which I had to invoke a couple years ago when a $7,000 box of their drugs failed to be delivered to me, and that is what we're trying to do right now with this new medication. The SCCA pharmacy, unfortunately, knows exactly what to do because they SEE THIS ALL THE TIME.
So, when a new medication is prescribed for me to be started the next morning because, in my case, I HAVE CANCER, Uniform and Bioscrip basically thumb their noses at me. If only I'd thought of that before saying no to the Fasolodex.
(except, of course—my secret weapon—Oleander and MMS maybe did keep things under control for awhile—so I can outwait YOU, big business health insurance!)
Tuesday, June 1, 2010
Tomorrow is my PET/CT. In a way, it really is my PET/CT, more than any of the other ones have been, because it's the one I insisted on getting after spending a few months treating my cancer in my own way, before adding any new Western treatments. I should capitalize that: My Own Way. Back in March, at my last set of tests, new cancer was discovered in a variety of places, but at a low, low level. It was, in fact, the opportunity I had been wishing for: enough cancer to measure so that I could try some of my own things, but little enough that I could try my own things for a few months without putting myself in the position I was in two years ago.
Don't get me wrong or tell me to be careful what I wish for—I also wish to be entirely cancer free forever and ever. I wish that my full-time, 24/7 job would fire me, boot me out the door, let me paddle around in unemployment for awhile, then let me maybe put some serious thought into switching careers. But it's not going to do that—not in this lifetime—and so instead I accepted the opportunity it did offer me.
My Own Way has been very different this year than it was in 2007. In 2007, I got my boob sliced off and then I washed my hands of the whole matter. I attempted to move out of the country, and took that opportunity to cut ties with Western medicine. I pretty much figured that I could beat the whole thing with force of will.
We know how that turned out.
This year, I took supplements: MMS (the Miracle Mineral Solution) and oleander. I read information, I listened to people, and I knew that simply doing nothing was not an option. I have also been seeing a talk therapist (well, sometimes just talking over the phone), and doing my best to let out emotional and spiritual sludge and decay. I have also been trying to incorporate my cancer more into my understanding of my life. I know I've talked about my tapestry, but even so, I kept feeling that time at the clinic was a step out of my real life. An empty space that had no bearing on what I was really all about. I would lie in my scans feeling, if anything, vaguely inconvenienced, but usually it's my habit to simply lie still, occasionally wondering how I got to be in that tube. I'm trying to change that mindset, to allow my life and all its threads to blend together a little better.
And what I've come to, having had the freedom to explore My Own Plan, having had the time to manage that in the middle of everything else in my rich existence, and having had two weeks of utter joyful satisfaction in LIFE and what amazing things I can do with it, is this: It doesn't matter where the care comes from. The only important thing is that I get to continue, as long as possible, hauling bales of hay. Riding 4 miles out of my way, and falling into bed, so blissfully comfortable and muscle-fatigued that it's a singular pleasure to lie awake. Waterskiing. Visiting foreign lands. Writing. Cooking. Clipping the nails of our incomparable dogs. Sharing spur-of-the-moment projects with Ian. Tortilla soup. Working out the etymology of a word. Piano. Morning coffee. And an infinity more.
There is no value added by the simple fact of me choosing the drugs. I don't have to have that control.
And so, tomorrow: my PET/CT. To my surprise, I find myself completely indifferent to the results. The scan will show what it will show, and I will make a choice.
Such is life.
Thursday, May 13, 2010
Friday, May 7, 2010
Insurance should be available for everyone.
Thursday, May 6, 2010
I met with Dr Specht today (after seeing my eye doc this morning and spending the next several hours with one eye dilated), and did not receive any new results from any tests from her, aside from the usual blood counts which were normal (not including tumor markers, which won't be available until next week, although the last ones from a month ago were, I think, 32, which is still within normal range, but higher than they were before). She was expecting me to tell her which of the three options for changed care I was interested in; at the close of my appt with Dr Jason on Tuesday, that's what I was expecting to talk about today, too.
But, yesterday at Taya's, I had a spectacular emotional breakdown about going back on chemotherapy because, it turned out, what I really wanted to do was have my next set of diagnostic tests (PET/CT, specifically) BEFORE anything else, because I really want to see if the MMS and Oleander that I've been taking since mid-March have done any good at all. Taya is a great person to have emotional breakdowns around, because she's seen them, and she's had them, and she's pretty calm about this whole life thing most of the time. And so, while I'm lying on her heated massage table, sobs wracking my body, my arms and legs and abdomen and face buzzing with 10,000 volts of energy just like in my panic attack, but not freaky because I knew why it was happening (more to investigate about this, I think), she sat there and chuckled and said "Good. Good! You're in a really good place now! Good for you! This is how you get more familiar with your intuition—break all these barriers away!"
Anyway, I felt quite calm and resolute going into my appointment today. I knew what I wanted to do and why; I'd done my research on the next steps and knew what those meant, so I could talk to Dr Specht about changing my treatment; but I was clear on what my intuition was telling me, and—even though it is scary to trust myself, and not just capitulate and start a new chemo immediately—I held strong for updated diagnosis before updated drugs.
Dr Specht was reluctant, but ultimately agreed, cautioning that she was getting more and more worried as time went by. I know she cares very much for me, and wants me to live as long as possible, and wants to do her best to help that happen, and doesn't really believe in a lot of the things I believe in, but she does, I think, trust me and what I need to do for myself. I know, also, that she thinks things will look worse on my next scans. But I don't think that—but, nor do I think things will look better—I can't keep an opinion on the matter at all. I just want to see what they say. I explained that I was not trying to put her off indefinitely; that I know that my situation is serious, if not at the moment presenting as acute. But that, if what I've been doing has, in fact, been clearing cancer from my body, I want to know that. She should want to know that.
I didn't put on an exam gown today, and so my sleeves covered my arms. There didn't seem to be any need to make a point of my tattoo, so I let it stay hidden. I think Dr Specht was worried enough about me today, without me essentially thumbing my nose at her.
And then I went and had my Herceptin infusion.
And now I am exhausted.
Tuesday, May 4, 2010
Dr Jason did, however, recommend that I go back on some systemic treatment (read: chemotherapy) anyway, because if the stuff in the brain already big enough to see isn't doing anything, then maybe the cancer cells are sneaking in from somewhere outside the blood-brain barrier. Also, last body scans I had, three months ago, did show some "marginal uptake" of a couple places in the skeleton, if you'll remember. Last night I read through all the proposed drug information Dr Specht left me with three months ago (not such a good night's sleep after that), and I asked for his recommendations to go with hers and my own guts. On Thursday when I meet with Dr Specht, we'll decide what to do next.
Dr Jason did suggest I not show the below to Dr Specht (his way of chastising me),
the new tattoo that I got last Wednesday, on the inside of my right arm. The reason I deserved scolding was that I had lymph nodes (some, not all) removed from under my right arm 11 years ago, which means that I am at greater risk for infections and lymphedema (uncomfortable swelling due to the body's inability to drain with a compromised endocrine system) on that arm. I haven't had my blood pressure taken or a single blood draw done from that arm since April 27, 1999--I know the risks. That was where I wanted the tattoo though, and it is, after all, my body, and so that's where it went. It's an orca and I love it. Dr Specht will live.
Tuesday, April 20, 2010
It's been my goal for the last few weeks to rest and relax and recover from some of the arguably frenetic activity of the last six or so months. On March 8, when we landed in Tokyo and successfully passed through immigration and into Japan, we visited our fifth continent in just over six months, if you count a trip to Mexico in August as our visit to North America, instead of simply living here. If you count simply living here, then we hit five continents in less than four months. This was nothing compared to the travel Ian's coworker, J (who was with us in Japan), has done in a similar amount of time—he figured he had crossed a world meridian—either east-to-west or north-to-south and vice versa—something like 80 times in six months (might have only been 60, but still). Much as I love travel, I think even for me that would be a bit much. Jet lag would stop even being a separate concept—it would just be the state of one's being.
Nevertheless, we were overseas a lot, and when we were home, I was pretty much in the clinic having radioactive tests and learning new dire information, or getting pins screwed into my skull so only the cancer in my brain was destroyed by the crossed beams of cell-destroying gamma rays, and not all the very important healthy tissue.
As you might imagine, it's been exhausting.
Before going to Japan, I had chatted with Dr Specht about trying a couple things on my own, and she'd given me three months to do so, but then I would have to decide on a new course of (Western medical) action, because some of the scans between Africa/Europe and Asia showed marginal new cancer activity. She offered me some information about suggested new chemotherapies and hormonal therapies and off I went, expecting to read about them in Japan.
Well, I didn't read about them in Japan, finding myself hugely distracted by Japan, and then two days after I returned home, we found during the gamma knife day that I had two additional spots in my brain, turning the one-spot anomaly into a three-spot trend. I was pretty sure that that information blew my hopes for trying my own, slightly less toxic? onerous? dictatorial? therapies, and I started getting really anxious and stressed out.
I feel like I've made some poor choices in my life (don't we all), and part of my recent anxiety has been not trusting my own intuitions to tell me what's best for me. I have come to see, though, that they are always telling me what's best for me; that the times in my life when I've made poor choices, I can remember that I've very clearly been ignoring my inner voice. Anyway, the day when I went in to visit Dr Specht, about 3 weeks ago, I just felt EXHAUSTED. Mind, body, spirit, emotion. WIPED OUT. It suddenly came to me that I was way too tired to make a decision about the future of my care—that, regardless of what the scans had said and what Dr Jason had found on Gamma Knife day—I wanted to take the remainder of my three months, the next six weeks (well, seven because of Idaho), and concentrate on rest, on recovery, on rebuilding my immune system, and on the couple of things I wanted to try. Dr Specht understood, and was willing to give me that amount of time, just so I stayed on Herceptin and Femara, even if they weren't 100%; and so I've been doing my own thing.
First off, I am not good at resting. Even though I've been doing it for a few weeks now, today is only the second day I've had completely unscheduled and without Ian around since 19 January. Since that was only a couple days before going to Cabo Verde, though, I'm pretty sure I didn't spend it lying about the house reading novels. I have been sticking close to home, and I've been reading more, and blogging less (well, not blogging more), and turning down a lot of social events, and allowing myself to feel what I'm feeling. I haven't had another panic attack, but I've also not driven farther than Greenwood—and not that driving itself freaks me out—but if I am freaking out, for some other unknown reason, worrying about being a safe driver does make it worse. I've done a lot of yard work, and have pretty much kept the household running smoothly the way I always do, but I feel like I'm taking better care of myself. And I tried MMS for a few weeks, and now I'm taking Oleander and South Africa's Cancer Bush, and in another few days I'll put them together and see what happens.
I mentioned to Ian the other night that, if cancer is my full-time job, it's also one in which I am on-call 24/7. Nevertheless, April has been a month off, as much as it can be. Part of my rest, I will admit, has included the beginning stages of planning a trip back to Kenya, and I haven't been to Australia yet at all (or Antarctica for that matter), and Ian and I sent in our passports for additional pages and so those need filling now, but for the moment I am learning self-trust and self-care, and I am, in fact, less exhausted than I was.
Monday, April 5, 2010
I haven't written a lot recently, as you know, Joel R and a few other dedicated hangers on, but I've been thinking about a lot of entries I could write, and I'm finding that the words I want to use are words that are sort of inherent superlatives. Like PROFOUND. Or SPECTACULAR. Or EXHAUSTION.
I'll start with that last one, just to explain the recent radio silence. It's not that either the cage screwed into my head, or the morning spent bolted into the radioactive distributer cap turned me into a pumpkin (by the way: total billed cost for that morning's procedure? $72,312.); rather, that morning was just one in a long series of intensive medical events bookended by wildly exotic international travel. We had to send our passports in for extra pages. Oh yes, I have been living the gloriously vertiginous life of high-to-low-to-high-to-low-again swoops—and I am still glad of it—but I realized last week before going in to see Dr Specht to talk about the necessary change in my care (made more necessary by the two lesions found on Gamma Knife day that turned the brain event from an anomaly into a trend), that I was in no position to make a decision about anything more important than what shoes to wear that morning, let alone a matter of life and death. MY life and death.
I was EXHAUSTED. My swoops and plummets, glorious though they were, had caught up with me, and I NEEDED A REST. Fortunately, Dr Specht understood, and also had something else she was going to follow up on, and so our original agreement—of me getting three months to try something on my own—is going to stand. I'll meet with Dr Specht in early May to discuss our changes, then I'll head off to Idaho for a couple splendid weeks, and then I'll return and get started.
In the next few weeks I hope to continue ramping up my use of MMS—the perhaps hyperbolically named "Miracle Mineral Solution"—I couldn't tell you yet if it will prove to be bald truth for me; and perhaps dabble in the mysterious world of oleander and African "cancer bush" supplements, but more on those another time.
A part of my experience for the last year that I haven't spent all that much writing about, which is taking on much larger proportions of my brain power these days as I'm trying to "take it easy" for a bit and am, therefore, perhaps less distracted by "real life", is the anxiety I've been feeling since the day after being freed from Taxol last April. Yes, the day after hearing that my cancer was confined enough that I could stop the most toxic of my drugs, I woke up to a feeling of slight disconnection that has been with me to some degree or other for most of the last year.
I have had several days, several weeks even, recently, when I've felt consistently right here, active in my world. I usually feel more engaged and more present at night, less engaged and less present earlier in the day. At the worst, I've felt a deep, relentless dread—that I'm going to drive off the road, that I'm going to have a seizure, that something will happen to Ian on his way to school—but specifics haven't been necessary to feel the dread. Sometimes, often, it's completely focus-less. Just chilling, debilitating dread. Up until recently, if I took an Ativan, an anti-anxiety pill, the dread would drift away and I would come back into focus, right here in the immediacy of this world we live in. But last week I took an Ativan when I thought I wouldn't be able to make it to my therapist's office without it—I woke from a nap feeling like, in about 30 minutes, I would feel like something awful was going to happen to the world—and the Ativan did nothing to stave off the anxiety attack. Fortunately, my therapist, who has done a lot with anxiety and post-traumatic stress, was able to talk me down pretty quickly once I arrived.
Today, however (and here I'm about to use the other two words at the top of this entry), the Ativan failed me PROFOUNDLY. I woke up feel a different kind of anxious today—the kind that makes you want to run on the treadmill for an hour, instead of the kind that makes you want to curl up in a ball deep in the corner of your bedroom with a couple dogs as doorguards keeping you safe. It was actually a nice change—I felt more connected with the world, which pleased me because I was off to see Taya and Debbie for some bodywork and some cranio, and I really wanted to go—and visiting them helps with the anxiety. I didn't have time for an hour on the treadmill though, or DDR as it is these days.
At any rate, dogs and I got into the car and hit the road, and I was feeling pretty good, a bit fizzy in the chest, but happy. But then the fizziness grew, and I started to feel antsy and like I couldn't keep calm in the car. I pulled off I-5 in Lynnwood—happened to be at a little park—and got out of the car to walk around and take deep breaths. I walked for about ten minutes, used a restroom, then got back into the car. I called Taya and told her where I was and that I was feeling anxious and she assured me I could take all the time I needed. I took an Ativan and a half—since the one hadn't worked---and sat for about five more minutes. I felt myself calming down (too soon for the Ativan to kick in, but I thought it would catch up with me along the way), and so we went back to the road.
Somewhere close to Everett I felt myself start to space out a little, and I noticed a bit of a tingle between my first and second and third fingers of the right hand. Now, I do drive with both hands on the wheel and I was gripping, and I had knitted for almost 2 hours the night before, but this felt potentially different. I started talking to the dogs and myself out loud, to keep myself present. "You're almost there," I said, "Only a little over ten minutes." I merged onto SR2 toward Lake Stevens, speaking quietly and comfortingly to myself the whole while. It sounded like my voice was coming from outside of my head.
All the while, the tension? Fervor? Expectation? Dread? grew on apace, and about 5 minutes from Taya's house, right after turning away from Lake Stevens onto route 9 north, I realized I had to pull over the car again—what was happening was not going to wait.
And it was SPECTACULAR. I pulled off the road at a conveniently empty bus turnout with a comfortingly vast yellow-striped "don't park here" section, well out of the way of traffic, turned off the car where I didn't belong and put on the brake and the hazards, just in time to be taken over by the most mind-blowingly petrifying panic attack I have ever even heard of. I thought I was going to pass out. My fingers started to tingle and buzz, then my face started to tingle and buzz and stiffen. I found myself remembering to breath, and to help myself in this task, I ran my buzzing hands up and down my buzzing cheeks, my mouth O-shaped, hooting air in and out. And the the buzzing spread, down my neck and across my torso, and back and forth across my abs, coming and going in waves of varying intensity. I felt like I would electrocute someone if I happened to touch them. It seemed that I could power my car just by thinking about it. I thought, dimly through my almost hysterical mindlessness, that I was really sorry I'd left my blood pressure cuff and my oxymeter at home. I called Taya.
"I am having a really hard time of it here," I said, breathlessly, a sob catching in my throat, when she answered. "I'm almost to your place, but I can't drive right now." She asked if I would like them to come and get me, and drive me to her place and I said "Yes, YES! THANK YOU!" out of a mouth strangely stiff, and seemingly frozen in my breathing O.
A life line.
I sat in the car and rubbed my cheeks and opened and closed my jaw and talked comforting words to the dogs and marveled at the sheer intensity of the electrical current arcing through my body, completely terrified that life as I knew it was ending. That Ian would have to ride his bike to Lake Stevens to take us home. That I would have to get out of the car right here, at this busy intersection, and pee behind the door because I was this close to not caring about propriety. That I would never be allowed to do anything on my own again. Not that it would matter, because I would be dead. There was no getting around that.
They finally arrived, just when I thought I couldn't take it anymore. I stumbled out of my door, body buzzing at 10,000 volts, and got into the back seat, telling Taya as I passed her that I was pretty sure I was having a seizure. She watched me walking and talking and operating the door, and got in to the front seat. I put on my seatbelt, then took it off briefly so that I could lean forward and offer information—how to put the car in gear, where to find the emergency flashers (I eventually just reached up and turned them off), how to release the brake, that the beeping from her not putting on her seatbelt would go off in a minute.
Gradually, as Taya pulled back onto the road toward home, someone turned off the energy taps that had taken over my entire being, and five minutes later, I ran competently into the bathroom and peed a gallon.
I have not had an outright panic attack in years, and this was by far the worst I've experienced. But the buzzing, the absurd, full-body high-wattage electrical generator, was INCREDIBLE to experience.
Sucked that it scared the crap out of me.
Saturday, March 20, 2010
Thursday, March 18, 2010
Welcome Home, Calin!
This morning, less than 48 hours after returning from a robustly fish-themed first-ever trip to Japan, I went in for my much-awaited Gamma Knife Procedure. It's true, the Gamma Knife was much awaited. From the beginning almost two years ago of this latest episode of cancer (which episode has helped me realize, I think, that it is not actually a fourth beginning but, instead, the fourth upswing in a single long episode of cancer that I have learned to call "one aspect" of my life path) I was interested in the focused radiation part—the "knife"—itself, and the more I heard about it, the more I was also interested in the the somewhat gruesomely barbaric preparation necessary to be able to hold my head still enough for the "knife" to do its remarkable focused radiating.
As you know, a routine MRI uncovered a tiny new spot in the left ventricle of my brain less than 48 hours after returning from my last overseas trip, to Cabo Verde and Portugal and England, and my "surgery" today was the direct outcome of that and the ensuing several more scans that I had in the three weeks before Japan. I've read recently that the shift in earth energies is causing more and more people to experience major things more and more often, in an attempt to help us learn to live in the moment—there simply isn't enough time to stew before the next major thing—and I have to say, in the past 3 months this has certainly been true for me.
Anyway, this morning at 6:00am we headed off to Harborview Medical Center and its Gamma Knife Center (one of 4 in the city, I believe, from research Ian was doing while waiting for things to happen—maybe I'll ask him to write up a quick post about Gamma Knife itself . . .). I checked in at 6:30, was first on the schedule of 4, and arrived back home close to 2pm.. It was supposed to be closer to noon, but the process is slightly different for every patient, and what was expected for me—that I would get in, get one spot done over a period of about 20 minutes, and get out, turned out to not be reality.
The first thing that happens is you get a metal cage screwed into your head by a neurosurgeon, one of three major players in the Gamma Knife experience. Even the cage itself doesn't go on the same way every time, because it has to be in a position that is out of the way of where the radiation is going. Most parts of the brain are accessible no matter where the cage is placed, but not all parts in any one placement. So the neurosurgeon comes in and says "I understand we're putting you in position to get treated for a lesion on the right side."
"No," I said, "I thought it was the left side."
"I'm pretty sure it was on the right side that Jason showed me," said Dr Bob.
"It says here the left side," said one of the nurses helping with the prep.
"Well, I'll be right back," said Dr Bob, and left the room. "Just as I said," he informed us as he returned, "the lesion we're aiming for is on the left side. In the left ventricle."
The placing of the cage was, in fact, the most difficult part of the day. Four shots of lidocaine were pushed searingly into my skull, then the screwing (by hand) began.
"Um, that really stings still," I said, and Dr Bob immediately pushed in another syringe of the numbing agent (my scalp has only recently started regaining feeling), in three of the four screw sites. The numbing hurt, a LOT, but it was the pressure of screwing the plate into my skull that really made me woozy. "I think I'm going to throw up," I informed my nurses, who started pumping saline into my IV and told me to take deep breaths, in the nose and out the mouth. The wooziness passed, to the gratitude of all.
Once the cage was installed, I was wheeled on a gurney up to MRI and had a picture taken of my brain including the coordinates of the cage, so that I could be placed perfectly in the Gamma Knife machine to hit only the spot we were focusing on.
I was then sent somewhere to rest and eat breakfast (Ian had been given $5 to spend on me at the hospital cafeteria) while Dr Jason reviewed the MRI to make sure he could perfectly identify the coordinates of the spot. Except that it turned out there were two additional new spots, both on the right, one, in fact, in a place where it almost couldn't be treated because of the placement of the cage.
The other two new spots were also very, very small—treating them in addition to the first one was not much of an issue since I was already there and prepped, provided the one under the cage could somehow be reached (and it was). And, in and of themselves, they, too, did not offer any serious risks at this time, either in size or in the locations where they were.
What they represent is a new surge of activity, presumably from the body, and delivered to the brain through the blood stream, because the original lesions in the brain are non-reactive at this point.
What this means is that maybe I don't, in fact, have time to try my own thing, even for three months. I'm going to sleep on it, though, a whole night tonight (jet lag allowing), and for the weekend read over the options Dr Specht has suggested to me, as well as continue my own research, and decide where I want to go from here.
I feel so healthy and fit and well for the most part, that I don't expect to see anything at all in my scans anymore, ever. I was surprised by the spot when I first found out about it in February, and I was surprised it was still there today. I mean, it was small—why couldn't my body, my supplements, my Herceptin and Letrozole, my general good health, my love, love of my life and all the richness that is in it, why aren't those things enough? And I felt bludgeoned in the face by the two new lesions.
I know that this is my path. And I know that today's experiences are all part of the richness. And I know that I am lucky to be alive, to be who I am, to have this wealth in its endless variety.
But sometimes, for just a little while, it SUCKS SHIT. No poetic language here.
Monday, March 8, 2010
Reporting to you from Yokohama, Japan: I am on the schedule for my gamma knife procedure on 18 March, two days after getting home. I'll be called the day before with specific instructions, but I will definitely be checking in between 6:30 and 7:00 in the morning. Depending on my position in the schedule, 1st, 2nd or 3rd, I'll be done at 2ish, 4ish, or 6ish. I'm assuming jet lag will help me with that.
Thursday, March 4, 2010
I saw Dr Specht this afternoon and heard about my scans from the last week. Let's see if I can get it all. So, we know about the tiny spot in my brain MRI. We also know that my spinal cord itself seems to be in good shape. There was a slight anomaly in the neck vertebrae, maybe, that showed up in the spinal cord MRI. However, the bone scan was great—and looked better, in fact, then the last one from 2008. I think that means that even the scar tissue is better? I don't know. At any rate, the bone scan did not show any new activity, including in the neck. And finally, the PET/CTs. The brain scans of the PET showed nothing at all out of the ordinary, but the tiny thing from the MRI may be too small to suck in enough glucose to be visible. The rest of the known lesions in the brain showed no unusual activity, and indeed many seem to be calcifying, which is supposed to be good. The PET of the rest of my torso (down to and including the pelvis) showed three areas of very, very minimally unusual activity, in a couple vertebrae and one back rib. It is likely that this is also cancer activity.
I'm in an interesting place here right now. For one thing, Dr Jason will probably call me and schedule a gamma knife surgery for pretty soon after Japan, to take care of the teeny spot that the MRI has shown, before it has time to cause any more trouble. For the body, though, what to do?
There are lots of options to try in the medical oncology world, and I've been sent home (well, sent to infusion, where I'll be for the next 3-4 hours) with information on two proposed changes to my current meds which, it appears, aren't working quite as well as we'd hoped for keeping everything down. I asked, though, and Dr Specht is tentatively willing to let me try something weird and alternative instead, if I can do it while on Herceptin and Letrozole, and she will scan me again in 3 months and we'll see what's happened. I told her I would write her a research paper on the two things that I'm interested in (I can't remember what they're called at the moment and I'm too lazy to look them up right now), and then make my decision. Several months ago, when I heard about these things, I thought to myself that I wasn't interested in taking any of them at that time—I was evidently in remission and what was the point—but that, if there were a circumstance in which evidence of disease was reassuringly small if not non-existent, I would maybe like to try something new. Not dive in from the very top of the cliff, but jump from a place where I could almost dip my toe, and be sure of not bashing my head in.
This is looking like that opportunity . . .
Monday, March 1, 2010
The poem that I posted over the weekend is the first poem that I've written since Mom's Creative Writing class in 10th grade. I'm not really a poem person—for the last couple decades, I've been a very concrete, spell it out sort of person. I'm a scribe, telling stories I've experienced, evoking people, places and things that exist, that I have known. I am not a novelist, creating worlds that exist solely in my imagination. There's a lot of poetry that I don't really understand, and for the most part I'd really rather be told the point and move on. Poetry seems to be, to some extent at least, a blending of the two modes—documentation and embellishment—and I really haven't seen the point, up until last Friday, when I came radiating out of my bone scan (no results until this coming Thursday) and couldn't leave the clinic until I'd jotted down a rough draft. I sat there on the bench in front of the second floor elevator, digging through my mental thesaurus, weighing grams of meaning against milliliters of implication, rhyme against alliteration, meter against free verse. My recent trip to Cabo Verde and more specifically Santo Antão, with its soaring mountaintops and crashing seashores, and our attendance at Avatar last Tuesday (Science Center 3-D IMAX woo), had towering heights and tumbling depths and swooping flights all topmost in my mind.
And this is the landscape of my life, pinnacles and pits, and the journeys between. I'm not living in Kansas.
I'm on one of the "vertiginous flights" right now, with three scans behind me and one ahead of me tomorrow, then a couple days to wait before I find out if I'm landing on a mountaintop or in a deep valley, or if maybe I just have to hike around a bit. And for the last couple days, I've felt it physically. My head feels just a little heavy, and my body's not yet used to hauling around the extra weight, so if I shake my head or turn too quickly or nod and walk at the same time, I feel a bit at sea. I had both eyes dilated today, too, (it's always something), and that definitely did not calm down the gentle, almost imperceptible motion of the earth. I've also been sleeping with my window open, just above my head, and my left ear is plugged, so there are tangible physical explanations for my perceptions. But that doesn't make the spiritual explanation less valid.
I had a dream this morning, between Ian getting up at 7:15 and me crawling out of bed at 8:30. I was on an island somewhere in the Mediterranean, and tons of people were around. I knew a lot of them (Cousin S and her mom, Dr Jason's dad K, my mom, the kid I went to prom with senior year of high school, among others), and interacted with some of them, but what I remember most clearly is this:
I was standing on a clifftop, a black, volcanic, vertical cliff with lots of little ledges and handholds, maybe 100 feet high—an awesome place to rockclimb—above a clear blue sea. The water was so clear that I could see perfectly tumbled lava boulders through the waves washing back and forth. My father was next to me, and then in one motion he leapt and dove off the edge of the cliff. I was petrified and ran to the side to watch him enter the water, sure that I'd see him dash his brains out on the submerged rocks, which were too clearly visible to be deep enough to avoid. He entered the water without a splash, his flexed feet burbling through with a small eddy at the end. He swam off to shore, completely unharmed. I found myself midway down the cliff face, holding a rope and kind of rappelling backwards, cautiously, carefully easing my way down to a place where I felt I'd survive the fall. About 10 feet above the surface of the water, I closed my eyes, screwed up my courage, and dropped in feet first.
The water was delicious. Clear and cool and buoyant and gentle, the rocks deep down and interesting, sunlit. I woke up before I could climb the cliff and try again, but I wasn't afraid of the leap anymore.
What I wish is this.