Monday, September 29, 2008
Our drive up to Anacortes yesterday was accompanied by several groups of motorcyclists, the largest being about 15. It was impressive to see them fall into formation in one lane, staggered right-left-right-left etc, one behind the other. It was particularly neat to drive behind them and see the long straight lines. They were definitely behaving as a single organism, not as a bunch of individuals, though, so it threw off both Ian's and my normal driving styles. One isn't used to a vehicle as long as three semis in Washington State, although from what I understand a semi can still be itself and pull two trailers behind it on the interstates in Oregon. Believe me, it's scary to drive a Civic when one of those is on the road. It's scary enough to drive a 4-Runner.
A group of bikers got off I-5 just behind us when we exited to take SR 20 to the boat, a group we'd passed on the road earlier. One of the men (I think it was a man—he had man legs) was wearing a helmet with crazy gray hair attached to it. Well, once I stopped the car at the light at the end of the off ramp and looked in the rearview mirror, I saw that the man (this is why I can't be sure it was a man) was also wearing a skull face mask with his, we now decided, crazy death head helmet. Hoover, who likes to look at the "road movie" unwinding behind him as we drive, noticed the man right after I did. His ears, already perky, tensed. "wwwWOOF," he said. "WOOF!" "WOOF!" Scaredy cat.
We found out when we reached Anacortes that we had happened upon a Classic Motorcycle Show, which they hold there every year the same weekend. I swear, it looked like Sturgis. There were bikers there from Fairbanks, bikers from the Northwest, and bikers from the Mid West. We saw lots of Bikers for Christ (lots of denominations), and a mobile tattoo unit. We did not see any Hell's Angels, which was a bit of a disappointment. Two really, really cute things were a German shepherd lying in the shade of his owners cycle, next to his customized dog trailer; and two riders we saw from the back as they rode down the street, and the one holding on behind had short, curly, little old lady hair.
We were able to see the bikers and take a quick tour of the show because we were two hours earlier to our sailing than we'd meant to be, because I could've SWORN that the schedule changed from summer to fall on the 29th, not the 28th. But no, it changed yesterday and so we arrived just before 9:30am for a 12:05pm sailing. A lot of people who spent the beautiful weekend on the island were probably even more annoyed than me—I at least could drive back to town and look at some good choppers—but they all got stuck waiting many extra hours and extra boats to get home because a couple sailings had been removed.
Anyway, Orcas was beautiful, as always. Our trees that we and friend E planted in April all survived the summer of inattention from us (the cherries were a bit stressed to not have been coddled but they were hanging in there, and E's nuts—I mean nut trees—were all gorgeous—one chestnut had even fruited!), THANK YOU VERY MUCH everyone who watered them and talked to them. We're very, very happy about them. Ian's parents came over from Bellingham with us and stayed to camp last night; we ate blackberries and the four yellow plums our inherited plum tree produced; Spackle and Hoover swam at the (smelly, smelly) mudflats in Anacortes and tore around the property until they were exhausted; Ian and I replanted a lilac that appeared to have been pushed over, but not actually destroyed, by the mower; we killed some paper wasps nesting in the eaves of our outhouse, way too close to bare bottoms; we ate a fancy dinner at the Orcas Hotel before getting on our ferry home; we drove back through Anacortes at 9:10pm and nary a motorbike was to be seen.
It was the farthest afield I've been since May—fitting, really, that it was back to Orcas. Next trip: Jerome Creek, Idaho, home of Dr. Jason's parents and my favorite horse in the world.
Yesterday, on our drive up to Orcas Island, we passed a giant pick-up on the freeway with a chrome scrotum, complete with balls, hanging from the tow "package", as it were, and swaying slightly in the motion of the vehicle. Nice.
This was not particularly related to a summer of cancer treatments, except that it was unexpected, a little unsettling, and a touch nauseating as well.
Saturday, September 27, 2008
For the most part this summer, I have been entirely without fear. This has surprised me, at least as much as it's surprised the people around me, if not more. I think I've had much less fear for my own health and long life than most everyone who's dealt with me. I was briefly afraid last spring when Dr. Specht called, after viewing my first brain MRI, and asked me to go immediately to the ER. Having your doctor call you and tell you your life is in danger is, in fact, scary. But even that fear lasted only a short time. I told myself that I was not appreciably different than I had been before the phone call—whatever tumors were there now had been there before, whatever danger I was in was no different than it had been—the only difference was knowledge. The only difference was that I now had a name to put on my only symptoms, the puking in the mornings. There was no real reason why knowledge would make me more likely to have a seizure, or die, than a lack of knowledge had, and the logic of that made sense to me, and I stopped being scared.
I am feeling a bit of fear now, though. The thrill of a quick response to treatments, the pleasure in shocking my doctors by my continued health in the face of dangers, the satisfaction in being the only intubated PCP (pneumocystis pneumonia) patient not in a coma . . . those have faded a bit. I realized several years ago—maybe only after I turned 30—that I was too old to be a prodigy anymore, in anything. I'd missed my chance to write a bestselling novel in my teens. No matter how much I practiced, I wasn't going to be a shockingly young concert pianist. Although I'm a good home cook, it was too late for me to be the next wunderkind chef. Not that I ever really wanted to be a prodigy, anyway—I didn't want to work that hard. Being relatively competent at a variety of activities was enough for me.
This summer, though, I have felt a bit like a healing prodigy—I've set myself big hurdles to overcome—brain tumors, life-threatening pneumonia—and I've been smartly overcoming them, much to the pleased amazement of everyone around me (including me, of course). It's been a lot of fun to be so good at what I do—namely, heal from cancer. But now that the initial uncertainty about whether or not I would actually live has faded, now that I can plan a vacation four or five months away with a reasonable amount of surety that I'll be alive to enjoy it, now that I'm free to drive and free to horseback ride and free, to the extent that I have the energy, to do whatever I want to do, I'm a little afraid.
When all I had to focus on was healing, it was surprisingly, shockingly (when I thought about it), easy to do without fear. There was so much at stake—my life—that there didn't seem to be anything at stake at all. I had one narrow path, and I took it. And I didn't worry about where it was going to lead me.
But now the path is wider. I have healed to a large extent. I feel better in a lot of ways than I did even early last spring. Mom keeps being impressed by not necessarily what I can do, but what I have the energy to even think about doing. It's true—last spring I barely had the energy to go about the things that I knew I loved—horseback riding, walking the dogs, day-to-day life stuff. In recent weeks, on the other hand, I've cleaned out several messes in the house, collected the components to complete some long-term projects, and come up with some Plans for how I intend to use my brain and my skills in the future. I feel good, I feel energized, and even though I take more naps and sleep longer and spend one day a week (usually—this last week it was three days) at the clinic, I know I am healthier than I was seven months ago.
And therein lies the risk. When I was really, truly ill, there wasn't any point in being afraid, because I appeared to have two options—Life or Death. Now that I have Life, I have a lot more options—riding again, taking care of my house and dogs and husband, cooking, doing projects, The Plans. And I desperately want to keep on with the richnesses of Life that have been, again, miraculously, regifted to me.
And so I also have fear.
Thursday, September 25, 2008
(this title's for Gregory)
Ian and I met with Dr. Specht this afternoon, and she was, again, quite pleased with how I'm doing, both in tests and in real life. I didn't have any more imaging this time—no bone scan, no chest CT (we'll do those at the end of November, sounds like), but my tumor marker blood tests both improved. One of them, the one with the small number, actually put me at normal—1.9 out of a recommended score of 0.0-2.0 (at last viewing it was 6.2). The other test wasn't quite so munificent, giving me 196 out of a high of 37. However, 196 is still down from 215, where it was last time four weeks ago. And I am feeling much better—setting up riding lessons and Gyrotonic, and starting to play Dance Dance Revolution with Ian again—and we have been given permission to remove the Oxygen R2 from the hallway, and return Moxy so she can be used by some other needy person (note—all the tubing that spent time in my occasionally snotty and occasionally bloody nose will be thrown away. Unfortunately, all the tubing that spent time merely in our house will probably be thrown away as well. Anyone want 50 yards of oxygen tubing?).
Wednesday, September 24, 2008
I had another brain MRI this morning and it looked good. I had written in my calendar that my appointment was at 9:00am, and I know you're supposed to be there 30 minutes early to get the port accessed and just be on hand, so Mom and I arrived at the hospital at 8:30. And then waited until 9:30, because I had actually written down the time I was supposed to be there, not the appointment time. Now, why they give you an appointment time, then ask you to be there 30 minutes early, is beyond me. The appointment time actually is 30 minutes earlier, else why require people to be there then? Anyway, Mom had brought along Julia Child's first French cookery book, so we had plenty to entertain ourselves with until I was called back. Somehow, I did manage to doze off multiple times during the actual noisy, noisy scan—I was very sleepy, probably because I actually had to get up with an alarm this morning, which is something I'm not accustomed to at all. I didn't sleep well, though, during the test. Occasionally the noises of the changing scans woke me, but more often it was just my own self snoring.
After the scan we (and Ian, who bicycled over from work) met with Dr Jason, and here is more or less what he said: The lesions are pretty much all looking better, some of them much better. The most worrisome one at the beginning of the summer, the one near my spinal cord, the one that was actually pressing into my spinal cord, has clearly shrunk quite a bit. There is now no visible pressing going on anywhere near the spinal cord. Also, since things have been continuing to respond to the treatments I've already had/am having, there are currently no plans to change anything. That is—no current plans for either gamma knife or traditional surgery. It's possible that my brain lesions will stop shrinking, or may even start to grow again, or that new ones will appear, in which case we will discuss different treatment options. It's also possible that they'll continue to shrink, perhaps even into non-existence (I vote for option number 2). I'll have another scan in about 2 months to see what we see.
In the meantime, tomorrow afternoon I meet with Dr. Specht again. I haven't had any scans with her in quite a while. I guess I had a chest CT in the hospital, or maybe right after I got out . . . yeah, I think right after I got out . . . but I did have a big blood draw again on Monday, so I'll probably have new tumor marker numbers. And besides that, we'll probably talk about taking the oxygen out of our house for good, and how I've been feeling much more energetic lately than I was last spring. But more specifics on this tomorrow.
Monday, September 22, 2008
Ian and I put a "NO SOLICITORS" sign next to our front door before we "moved" to New Zealand last year, and it's really cut down a lot on the number of strangers who come knocking. Until this evening, when Spackle's deep I'm-a-giant-mastiff-going-to-tear-you-to-shreds-you-stranger-if-you-come-into-my-yard bark (he's really hoping to scare people away with the bark, because at heart he's a total softy) alerted us to a strange man with pink streaks in his hair coming up our stairs. Hoover of course went wild, and so Ian went to the front door bent over, gripping Hoover's collar, while Hoover flung himself this way and that, barking hysterically. Ian opened the door as Spackle and I arrived, more sedately.
"I'm sorry," Ian said to the stranger, who was carrying some small brief case or clipboard or something, "but we don't take solicitations of any kind. Did you see our sign?"
The man said a little testily, over Hoover's insane barking, "Well, legally you can't keep me from knocking on your door—I'm with the Democratic party."
"Yeah," Ian said, still leaned over, holding the dog, "we're with the Democratic party too, and we don't accept solicitors here, and we're not going to talk to you now, legal or not," and he slammed the door, with the help of Hoover who jumped against it, over the man's last, rather indignant words.
If we don't want strangers coming to our door, and we've made it clear to you in the politest way possible, don't come to our door, legal or not.
I desperately hope that the rest of the Democrats out there stumping for Obama are a little more polite.
Friday, September 19, 2008
I've wondered several times over the summer when the cancer started growing in me—at least, when it was measurable. We all have cancer cells in our bodies all the time, but occasionally something goes wrong with our immune systems and those individual cells catch hold and wreak havoc, instead of simply being destroyed.
It's likely that, had I been seeing allopaths regularly, my current cancer would have been discovered long before it got to the point of riddling my lungs, bones and brain. But not necessarily—these things can come up fast, say, within six months, and it could have been the six months between check-ups. Anyway, I'm not regretting my decision of last year—to take time off from cancer and treatment and live a "normal" life for awhile—I'm merely wondering when the cancer would've started showing up on scans.
I'm wondering this for a couple reasons. First of all, the riding lessons I've been taking since 2001 have been primarily for hunter/jumper—that is, a typical lesson starts with a warm-up on the flat, walk-trot-canter and some dressage, then ends with jumping. I was far from accomplished as a jumper, but at one point I was pretty comfortable jumping a series of four or five jumps in a row, each one about two feet tall. Not so this last fall and winter.
Once we'd decided to stay in Seattle and bought a car, I started my riding lessons again. I jumped for a couple months, but gradually became less and less comfortable with it. I took a spill off a tall horse in one lesson and landed on my hip. It wasn't that I was riding unbalanced or otherwise poorly, but that the horse didn't want to go straight after the jump. We'd gone over once and he'd swerved to the left instead of heading the several paces to the arena wall then turning; Stephanie, to help me keep him straight, had gone to stand some distance from the jump on the left side to encourage him to reach the back wall. He was having none of it, though—even with more pressure on the right rein and left leg to keep him straight, he took one look at Stephanie when he landed and turned immediately left. I flew off. I didn't get injured, but I also didn't jump him again in that lesson, which I really should've done for both our sakes. Soon after that I came in one day and said to Stephanie, with some regret because jumping's fun, "You know, I'm okay not jumping for awhile." In part, my favorite horse at this barn had been sold and none of the others were as responsive and comfortable as him, but mostly something just didn't feel right. I rode for maybe another month and a half, all flatwork, before my morning nausea and my shortness of breath brought a stop to that as well.
The other reason I'm wondering about when my cancer was measurable is because sometime in the spring I virtually stopped driving, on my own, without Dr. Jason requesting it. Again, I just felt not right in some way. I was starting to be a bit fatigued, and I guess I just didn't think that gave me the right level of awareness for operating a vehicle. I think the last time I drove before last week was to an acupuncture appointment in Fremont, and I enjoyed the freedom of taking myself somewhere, but mostly I was content to let someone else operate the car (although I was very bossy about where he should park, where he should turn, and how fast he should go—a lot of fun for Ian, I know).
Looking back, it seems that my body was very clearly telling my mind that something was wrong, and equally clearly making recommendations for how I could be the safest until I found help to deal with the issues. As the spring progressed and my bones became more and more riddled with cancer, falling off a horse would've been more and more dangerous to my physical health. And as the spring progressed and my brain became more and more riddled with lesions, driving became less and less safe for me and the people on the roads around me. And so my body told me to stop doing these things.
But the telling—it's very hard to hear and understand the body. I think I did a pretty good job—I took it easy, I didn't try to muscle through or ignore my hesitations—but I kept wishing the messages were clear. It was such a relief to have a sinus infection, because I knew what that was. Of course, the messages were clear, at least clear enough to keep me safe, and they perhaps would've been even more clear if, from the start, I'd been open to the idea that the cancer was back. I was trying every method I could think of, barring Western medicine, to prove to myself that it wasn't cancer—who knows how many small clues I was deaf to.
My body feels good now. I feel safe driving—I haven't, as I'd worried, thought at all about having a seizure on the road. I feel good. And I felt good on the horse yesterday. I'm a little sore today—mostly my sitz bones, which don't have so much muscular padding as they used to and will again—but by no means wiped out. I was tired yesterday, too, after I returned home from my ride, but a comfortable tired, not a drained tired. I cooked dinner and went with Ian and Hoover to puppy class, and was in bed around 10:30pm. Even the chemo fatigue is nothing, now that I look back on it, to the way I felt last spring.
I'm on the mend.
Thursday, September 18, 2008
From what I can gather, looking back over my calendar, today is the first time I've been horseback riding since April 14, or five months. Granted, that's nothing compared with the 13 ½ years between 9th grade, when I sold Snappy, and October of 2001, just after Ian and I were married and we went to Idaho for a long fall weekend of trail riding. Snappy went for $700, and Dad gave me 15% for doing part of the legwork, even though I'd done nothing to pay for her care in the 4 years that I owned her, and had even been fired by a riding instructor for not ever practicing his lessons (Deane was fired too). Nevertheless, that weekend in 2001 reminded me of all the joy of riding and interacting with horses, and when I returned to Seattle I quickly found barns—relatively close—where I could get back into it. I don't currently have a horse of my own on which to practice my lessons, although you may be sure that I would now do so. Having grown up on a farm where the horses had outdoor space and small herds (they're very social), the whole keep-your-horse-in-a-stall-all-the-time-except-for-1-hour-of-turnout-alone-in-a-muddy-paddock-each-day seems bleak to me. I will have another horse or so (three seems like a good number) someday when we have the land.
Anyway, I know that I'm pretty weak still, so I thought I'd try to get in a trail ride before the weather turned, if Stephanie (my excellent instructor) were available. She was, today at 1, and put me on a very, very safe old plug, and we wandered through the woods together for an hour. It was great to be back on horseback. I actually felt, while I was riding, like the athleticism of it was no trouble at all (of course, that's why I wanted to go on a trail ride in the first place—I knew that at least my first day back should be all walking, and that's much more interesting on a trail than around and around and around the arena). My legs stayed quiet, my hands stayed quiet, the horse, MacDuff, also stayed quiet. Stephanie walked, and we were able to have an excellent conversation covering all of the last five months in both our lives (well, touching on the all the last five months), because she didn't have a horse to pay attention to, and I really didn't either.
The only slight trouble was coming back down the hill at the end of the ride—MacDuff, unlike Shadow and her Appaloosa herdmates in Idaho, didn't automatically pull himself together so the greatest downhill force was centered in his haunches—instead, he wove back and forth across the trail, into and out of the blackberries, until Stephanie reminded me to shorten my reins and pull him together a little. Which worked—he stuck to the trail after that.
Anyway, I didn't feel tired or winded at all during the ride, so it was with some surprise that I dismounted and found my inner thighs to be shaky with fatigue. I didn't collapse to the ground in front of the barn, but I did notice a quivery tiredness throughout the grooming. So I was right to not try anything more strenuous my first day back. On the other hand, I think it'll come back pretty quickly when I have time for regular lessons again. I keep being amazed by what muscles remember how to do, by what they'll simply do, even if they really don't have the strength for it.
At this time of year I always find myself sleeping more, and wanting to go to bed earlier. I know it's the ancient cycle of seasons at play in my body—as the days get shorter, there's historically less and less reason to be awake. After all, there's not much hunting, gathering, or repairing of tools that one can do in the pitch black (did tools come after fire? Probably . . . but then, I'm no historian). Anyway, I've been finding myself yawning and thinking about bed at around 8:00pm the last few nights. I make myself stay up until 10, but then I'm plenty happy to go. I stayed in bed until 9:30 this morning, too. I know part of it is simply chemo fatigue, but a lot of it is the season change (strangely enough, once winter really hits and the days are incredibly short, I find myself wanting to stay up until way after midnight.).
Of course, the financial markets and the political scene are enough to make anyone want to hibernate for a while anyway.
Tuesday, September 16, 2008
I asked to resume taking the dexamethazone yesterday, and sure enough—no flu-like symptoms last night or yet today. My tummy feels better, and my joints aren't aching. I didn't sleep very well last night, and each time I woke up I thought about Sarah Palin, which didn't make my waking times comfortable, either, but I so much prefer this to how I felt last week. After the dip to 5 and the spike to 60, my white cell count seems to be hovering around 22. I'll get another tumor marker test next Monday, and another brain MRI next Wednesday.
Sunday, September 14, 2008
My plan at the beginning of the summer—no, let's be more exact—my plan from the time we considered staying in Seattle last October and I told Ian if we did we would have to buy a ski boat—was to spend a lot of time this summer waterskiing. For a variety of reasons this had not happened. One reason is that, on truly warm and sunny days, Lake Washington is full of other boaters, and as a contained volume of water, is also full of huge waves that break against the boat like boulders. Not a fun time to ski. My cousins who live in Kirkland frequently go out at 6:00am, when the sun is misty and new, and the lake is glassy calm. But their boat is moored on Lake Washington. We would first have to ask to have our boat taken down the evening before, then we'd have to motor the slow, slogging pace through the Ship Canal for 30 minutes, then we'd be on Lake Washington and we could ski. That just seems like a lot of extra work to me, to be, essentially, very cold and wet in a very short time, very, very early in the morning.
And, then, of course there's been the matter of the cancer and the pneumonia and the treatments, so I haven't really been at my full strength this summer, plus the entire month of July was a total loss because of the hospital. Also, the last time I waterskied was about 15 years ago.
Anyway, about a week ago I decided that, if at all humanly possible, I wanted to ski at least once this summer. On Thursday, the chill of the lake put me off the idea a little—after all, it's been cold at night and Lake Washington is significantly colder than it was just two weeks ago. But today seemed like it might be our chance. Our friends T&E (recently engaged in one of the cutest stories I've heard) came with us, the weather was hot, and I was determined to try and find a place that would work.
Well, of course Lake Washington proper was full of water boulders again, but as we bumped across it, Ian looked over to Juanita Bay and suggested we check it out. A little bit sheltered, big enough to go fast (i.e. we would be far enough from shore), and evidently party central today (ski boats anchored and rafted together playing music popular with frat boys from the early 90s, lots of people on wave runners, some skiers). We decided it looked good enough to try, so we pulled the tags off our tow rope and skis (they were very new), I zipped up my super tight (and I mean actually tight, that's not slang for hip or cool or awesome or other slang words) lifejacket and away I went. That is to say, Ian had never towed a skier before so he had a bit to learn (which he learned very quickly), and I was using my atrophied legs that hadn't done it in 15 years. In 4 or 5 tries, I managed to get pretty much up once, but Ian cut back the acceleration too quickly and I fell in. I decided discretion was the better part of valor and got out. Then, much to our delight, E decided to have a go. She got up immediately and skied around several times (I was driving at this point, and was also learning/remembering—I had driven skiers several times before, but again not in 15 years. At least once she fell as a direct result of my actions). Then Ian went, and he got up immediately as well, and even did a tricky trick where he crossed one wake, then turned and went all the way across the other wake! He told us when he got out that the second wake crossing was an unavoidable consequence of the first—he couldn't stop the skis in the middle on the way back.
After all that, I had to try again. First hit it! was just a continuation of water being shoved quickly and coldly into all orifices, but the second time I actually got up! I got up, on water skis, and I skied! It seemed that the rope was pretty short though (we have an adjustable one and we'd adjusted it too much, I think), and I decided to let go rather than crash.
We adjusted the tow rope and E went again and said that yes, indeed, it was easier. And then we came home.
Note: This is Ian skiing, not me. I didn't stay up quite long enough for the camera to be found. Next summer.
Saturday, September 13, 2008
Thursday, September 11, 2008
Wednesday, September 10, 2008
The first place I went with my newly re-found driving emancipation was to Goodwill, where I dropped off a couple boxes of things that have been sitting in our basement for, literally, months. In fact, one large covered basket has been down there, waiting to be donated, since the day we moved back into our house in December. So as you can imagine, it was a relief to go. I arrived just after another woman, who was driving a large black GMC SUV which made the 4-Runner look, if not small, at least modest. And then she left the monster running while she donated her bags of clothes and got her tax receipt. Listen lady—you wanna save a few cents? Turn off your car.
Tuesday, September 9, 2008
First, before I talk about my two things, please read the comment Ian posted to "Do Statistics Count As Permission?" because he spent a lot of work time figuring out what, exactly, he was trying to say to me, and I've suddenly gotten extremely verbose in this blog, so all his hard work is at risk of being buried.
Now, today. First thing: Dexamethazone. Definitely want it back next week. I've been fine, more or less. Meaning I haven't puked. But I did have to ask for bathrooms in both Anthropologie and Coldwater Creek (the sales associates were very nice about it in both stores and the bathrooms, too, were better than the ones at the grocery store where my brother always had to go when he was little, even though we were ten minutes from home, or sometimes one minute from home), and my bowels have definitely not been happy today. I've been awake enough to suit me—I had one shot of caf and three of decaf in my morning coffee today instead of all decaf—but it's definitely not been a normal Tuesday. And I didn't even sleep well last night. A good night's sleep was the main reason for not wanting the Dex, and I didn't get it. Anyway, I tend to soldier on through all sorts of adversity, so I did manage to buy a new pair of jeans, a birthday present for Ian (ha ha Ian—you have to wait six weeks!), and some soaps at the Body Shop. I also helped Mom pick out a jacket at Pendleton, then sat in a chair at Coldwater Creek and chatted with a dashing elderly Pennsylvanian about our fair city while his wife and Mom shopped. The gentleman had not been to Seattle before and loved it. I did point out that this last week has been a particularly good time to visit. Regardless, next week: Request Dex!
Second thing: Driving. When you're told not to do something for reasons that you feel are no longer valid and you do it even though you haven't checked with the reasoner to see what he says, there's a tiny thrill of getting away with something, of disobedience, of freedom, of self-determination. But when you talk to the reasoner and he says "Sure, you can do it—but be careful. Listen to your body. Use common sense and your intuition," well, suddenly doing the thing is a whole lot scarier, because there suddenly seems to be a whole lot more responsibility than there was before. This is augmented by the fact that cancer patients are constantly feeling things that they're not used to feeling. Today, for example, I don't feel the way I normally do the day after an infusion. But I can use my common sense and recognize that what I'm feeling is bowel-related. But still, there is always a question. So yeah, I'm thrilled to be driving officially. But I'm going to be extra careful.
Dr Jason, bless his heart, just called me back, and I—bravely, because I have plans to drive from Seattle to home this afternoon after our oil change and I didn't want to have to change them—answered the phone. He cleared me to drive, provided I use common sense. He said again that it was pretty unlikely I'd have a seizure at this point (and he did say that legally, I can only be barred from driving if I've had one), but the first one is usually unexpected anyway (apparently you can recognize signs once you've felt them—but if that were to happen I obviously wouldn't be driving for several months anyway). So I am to listen to my body, see how I feel before I get behind the wheel, and not go too far yet without someone else in the car with me. So, no trips to Orcas while Ian's at work and no solo jaunts to Idaho to go riding bareback in the woods all by myself. But I can go to Lake Stevens, I can go to Woodinville, I can go to Renton, and I can go to Greenwood Ave, and I can certainly come home this afternoon.
I'm very happy right now.
One of my dear friends sent me an email this morning asking me please not to drive until I'd been given permission by my doctor. I know, I know that my post about driving is going to be controversial—it's a controversial subject within me—it's certainly going to be controversial outside me, and for good reason. I know.
I did a quick google search then, just to see what I could find, and I found that in England, for example, one has to wait two years to drive after having secondary brain tumors (my kind), and one year after having a seizure. But I couldn't find anything in the US.
Then Katy, Dr Jason's nurse, called me back, and said that it's illegal to drive in the US for 6 months after having a seizure. But I haven't had any, so where does that put me? She was going to ask Dr Jason to call me if he has the time. Otherwise, I see him in two weeks.
It just never occurred to me that I may have this thing I love taken away from me for so long. And if driving is taken away, so is horseback riding. So are visits to Idaho. So is Taya, my fantastic bodyworker in Lake Stevens. So is Gyrotonic, really, because even though it's only three miles away, it's three buses and at least a 45-minute ride each way. So are trips by myself out to Maple Valley to see my Mom. So are trips up to Orcas on my own to prune trees or pull up Scotch broom while Ian's at work. So is taking my grandmother to lunch, just the two of us.
I cannot, nor do I want to, always ask friends to drive me around. I can't take a taxi to Lake Stevens or Woodinville. Frankly, this whole situation scares me more than anything else that's happened this summer.
I believe that everything that happens to us teaches us something valuable . . . but having to give up so much of what I love, so much of what makes me feel healthy and alive, that's a lesson I don't want to learn.
Monday, September 8, 2008
Today I drove myself to the clinic via the Essential Baking Company and home again, via Museum Quality Framing and the dry cleaner's. Ian really had to be at work (he's publishing a paper that needs revision, in addition to his real job), and my appointment was entirely midday. So we discussed last night and decided we both felt safe with me taking myself. After all, three buses and 1 ½ hours one way is ridiculous, as is $28 cab fare. Particularly when there's a perfectly good, new vehicle sitting unused in the garage and a perfectly good driver who needs to get somewhere.
I pride myself on my driving. I am attentive and assertive, but rarely aggressive. I signal in plenty of time for people to see my intentions, but not before (I'm also not one of those people who signals a turn after already beginning it, for example). I maintain a safe following distance, even still occasionally checking my position behind the next car by finding a fixed item on the side of the road (a sign, a particular tree), and counting off under my breath "one one thousand two one thousand three one thousand". I tend to drive a little fast, yes, about 5 mph over the speed limit. I tend to drive in the left lane, yes, but I am careful to check my rearview mirror regularly and I have hardly ever held someone up. On two occasions, me being in the left lane and next to the shoulder—i.e. an escape route—has kept me from being in a major accident on the freeway. When we go skiing, I typically want to drive home, because I know I won't fall asleep. I rarely look directly at my passengers when I'm driving, instead keeping my eyes on the road and frequently checking all mirrors to make sure nothing is going to come up from behind and surprise me. If someone is tailgating, or too close behind for my comfort, I increase my following distance. I don't answer my phone. I never take both hands off the wheel at the same time.
In other words, I have spent a lot of time perfecting this skill, so it was particularly disturbing for me to be told, 3 ½ months ago, that I had to stop driving because I was at risk of endangering others simply by being alive. Not because I'm reckless, not because I'm aggressive, not because I'm an alcoholic, but because this disease that's been dogging me for the last almost 10 years decided to mess with my head.
At this point, right now, I can't really imagine not worrying a little for the rest of my life about a seizure causing me to lose control of my vehicle and possibly injure or kill someone. It's such a strange feeling, not having any personal control over what has happened in my brain. I am a true child of the American West—my car is my freedom. I love to drive.
But I want to be as safe as possible while doing it. So Ian did some rough figuring. I've been taking Keppra, the anti-seizure medication, since near the end of May, or probably about 3 ½ months. That's about 100 days, at 24 hours per day, or 2400 hours. I have not experienced a single seizure. It takes me about 30 minutes round trip to get to the clinic by car, so approximately 1/4800th of the time I've been on Keppra. That alone is pretty good, but factor in that I was still driving last spring while I was throwing up every morning (my only symptoms of my beset body)—maybe 2 more months before anything was discovered, so another 1440 hours—and that brings my likelihood of a seizure on the way to the clinic down to 1/7680th, or 0.00013.
Obviously, Ian being a statistician and me living with one, we know that statistics mean nothing for the individual—they're merely demonstrating a trend. But it was a trend that made us both feel pretty good about me getting behind the wheel in this case, so we took advantage. And of course I was fine.
I intend to call Dr Jason's nurse tomorrow and ask her to ask him for his opinion. I can't say I'll abide by it completely, but I won't go on the freeway, or for long distances, until I'm cleared. When I told that to my nurse today at the clinic, she said "He'll tell you no, that you should wait a couple weeks until your next brain MRI and then you'll talk. He's a responsible physician."
"Unless he meant to tell me I could drive last time I saw him, when I got out of the hospital," I replied hopefully.
"No," said my nurse, "he'll tell you no." But she wasn't angry or disappointed in me—she understood.
I know that Jason will tell me not to drive, at least for a little longer. That's probably part of the reason why I didn't call him this morning. But he did say, right before I left the hospital, that my brain had simmered down enough that he no longer thought I was likely to have a seizure. It's not the same as saying "Here are the keys to my new Ferrari, why don't you take it and speed down the freeway and through neighborhoods full of children," but it was a highly educated guess at my level of health, and really, that's the best anyone can ever hope for.
Today at the clinic I didn't get any dexamethazone in my pre-med cocktail. I asked my nurse what it was for, anyway, and she said reducing side effects from Taxol—nausea, achiness, that sort of thing—and I said since it wasn't life-threatening to not have it, I'd not have it and see what happened. Not everyone does have it.
Well . . . I think next week I'll request the dex again. I've been very lethargic since getting home—which isn't totally a bad thing—I've enjoyed lying on our bed rereading a mystery novel (The Tiger in the Well, by Philip Pullman of His Dark Materials, third in the trilogy about Sally Lockhart), but I've also had some lower back stiffness and an almost flu-like roving ache in my muscles. And usually I'm pretty awake the day after as well, and tomorrow Mom and I are going back-to-school shopping, so I don't want to just drag around and be a total deadbeat. Maybe I'll make some real caffeinated coffee for myself tomorrow.
If you can't get the desired effect from one drug, there's always another option.
Friday, September 5, 2008
I've been eagerly awaiting the bill for my hospital stay for at least a couple weeks now. I think my friend L had already seen the totals for her surgery and hospital stay within a couple weeks of returning home. I was a little jealous of that (I'm also jealous that today she got the green light, as it were, to drive again and I have yet to hear anything . . . but then, the concern with her was would the driving hurt her back, not would she drive off the road and into innocent bystanders, hurting herself and others).
Anyway, as of today I am jealous no longer in the matter of the hospital charges—my bill, or rather, my summary of charges that are going to be submitted to insurance (thank goodness) arrived today, and I think, by sheer numbers, I've beat L hands down.
My total, for 24 nights: $142,154.28—and that doesn't even include a surgery.
Some of the subcategories include 13 days in the ICU for $46,449 (the regular room, without the private nurse, was $1,200 less per day, totaling a mere $26,202); Pharmacy for $20,957.29 and Drugs/Detail Code for $9,181.76; MRI—Brain for $6,156; and Phys Therp for $2,439 and Occup Therp for $1,887 (not including Phys/Therp Eval: $216 and Occup/Therp Eval: $218. Why the $2 difference? I don't know.). There were also thousands of dollars of Lab and Pathol.
Now, I know things in hospitals are expensive, and I understand that operating costs are high, but $2,439 for Physical Therapy? They were all charming and friendly, but I think they got me out of my bed a half-dozen times and walked me around for a total of up to 100 yards, and maybe 20 minutes. They didn't even take me up stairs, or suggest it, or remember to ask if there were stairs in my home; Ian and I took that jaunt by ourselves (it did look strange, I think, for the two people who used the stairs while we were there, to see me sitting in a wheelchair on the landing, nowhere near the elevators. Going where?). And the Occupational Therapist came even less often, although she helped me shower twice (and, frankly, that was worth $1800), and encouraged me to get out of bed and sit in a chair. But she didn't make me, or even watch me.
One thing that was difficult to work around in the hospital was the IVs and the oxygen tubes. Here I was in the last few days, supposed to get up and brush my own teeth, supposed to sit in a chair, if possible supposed to use the bathroom, but I was tied to my bed pretty effectively by the tubes poking into me. Eventually, maybe a couple days before I was released, my 24-hour IV stopped so it was only O2 holding me. Even so, it took a lot of initiative—something hard to come by after weeks of lying in bed—to stretch to the limits of my hoses and tubes and not just stay put. Even while I desperately wanted to be somewhere else.
Anyway, there is some chance that I'm not remembering the all the visits from the physical therapists or the occupational therapists, but I really don't think they came when I was intubated, and I know no one ever came to see me on weekends.
I will say this—it's a good thing I was hospitalized after Ian started his new job and our new insurance kicked in, because the old insurance has a $100,000 yearly limit, and we're pretty sure the new one doesn't have a limit at all. I will say this too—it's also good that I was hospitalized over the summer, because the old insurance doesn't actually kick out until the end of this month. So we should have plenty of coverage to mop up the bulk of this.
And I will say this as well—it is good to be home. SO GOOD.
Wednesday, September 3, 2008
We had some camping gear and an ice cream maker to put away in the garage today, and to reach the shelves, someone needed to back the car out. Ian was in the last stages of preparing to leave for work, so I said I would do it. "After all, the chances of me having a seizure backing the car out of the garage are pretty slim." Ian agreed that was true, and let me have my way (knowing that if he didn't, I would back the car out later, then also lift the big-enough-to-hide-an-adult-body camping crate up onto the 5-foot shelf myself. I'm feeling better these days). He lifted up the crate, I put away the ice cream maker, he went off to work, and I pulled back into the garage.
Dr. Jason, if you're reading, how soon can I drive? Really drive?
Tuesday, September 2, 2008
I think you might remember back in early June when we switched medical insurance and my G shots, Neupogen, the $1700/week drug, was a problem to obtain. For a quick recap, the new insurance company wouldn't cover me just picking it up, conveniently, at the SCCA pharmacy; instead, since my insurance categorizes Neupogen as a "special injectable", it had to be mail ordered, at least five days in advance. Well, I didn't have five days; I needed it that evening.
Anyway, the clinic is set up so patients can get their G shots administered if insurance won't pay for you to do it at home, so I set up five appointments and slogged in every day for a week, and spent a minimum of 45 minutes and $2 on parking every day. Ian and I wondered how much the clinic was likely to charge for the service.
Well, I got a bill today, and here's what it says:
$672.68 for the drug and a nurse to inject it, every day, even though I could've done it myself, for about $320 from the SCCA pharmacy, although, granted, about $275 from the mail order place.
Of that amount, the insurance company paid $520.65, or close to twice as much as at their prescription broker, and $200 more than the SCCA pharmacy.
$94.18 was an "adjustment" for the preferred insurance company status.
I appear to owe $57.85. So with the parking, it basically cost me $60 per 45-minutes to get those shots that week, when I could've done it myself for free.
There is a relatively good chance that I won't, in fact, have to pay those fees, because we found out while I was in the hospital that last year's health insurance actually covers us through the end of September. I didn't call the clinic to let them know until about a week ago, though, so I'm pretty sure this particular bill was only sent to primary insurance. Yes, I'll be on the phone again tomorrow, getting things straightened out. Or what counts as "straightened out" in the tortuous, knotty way of medical finance.
Monday, September 1, 2008
I went to the clinic today for my infusion, and the guy at blood draw told me it was tomorrow. I asked him if he was sure—I know today is a holiday, but I also know that the infusion room is open until 3:00pm on holidays, more than enough time to flood me with toxins, and I could've sworn I copied down my schedule correctly into all my calendars. But no, he printed out my schedule, and sure enough it says "TUES 2 Sept". That's tomorrow.
I was annoyed—somewhat because, while I don't mind having infusions eight days apart, I don't really want to have them only six days apart, and my next one really is next Monday. But more, I admit it, I was annoyed because I was wrong. I hate that, don't you?
Anyway, I called Ian up (he has the day off and had just dropped me off) and he came back to get me, and we decided to do a small driving tour of Seattle, ending at Alki where we'd drop off some firewood for our friends D&K for their backyard pit (the firewood had been collected from Mom and Marsh to be used camping at Wanapum State Park Saturday night, but we found out when we arrived there that wood wasn't allowed anymore for fear of larger fires). Anyway, we took our time getting to Alki, first driving through Georgetown and then South Park, where we'd never been. I like the looks of South Park. A bit gritty, lots of Mexican groceries and restaurants, small houses with big yards.
By the time we got to D&K's house at Alki, I was mostly resigned to my error, and the fact that I'll have to be infused tomorrow. After all, I didn't think I was going to get to spend this day with Ian, and now I get to. Mom, who taught school for 30-some years, calls days like this—when you thought you were going to have to do something and at the last minute find out you don't—"snow days", and she's always excited to have one.
I guess I am too.