Tuesday, July 5, 2011
Overcompensation
Friday, July 1, 2011
Delayed Gratification
- · MS is recovering nicely and, while she’s accompanying me to Idaho again on the 5th, she won’t be riding at all until later in July back in Woodinville. She will be in Idaho merely to hike and sunbathe and relax with dogs.
- · My own riding lessons have been advancing at a new pace—or maybe, I leapt up (ha ha) to a new level recently and now I am continuing to advance at my slow pace but over the higher jumps and with more of them in a row. Very exciting!
- · Starting tomorrow I will be essentially away from Seattle for the month, except for three days near the end of July where I will have 1. an MRI and follow-up visit and then my legs sugared (starting at 6:30am, this day will be); 2. a visit to Dr Specht and a blood draw and Herceptin, so, several hours at the SCCA, followed by a massage; and 3. an eye doctor appointment where probably I will get only my right eye dilated—to see how it’s recovering from the needle—then I will be driving out to Maple Valley to drop dogs and pick up our boat trailer, because on day 4 we will be up early-early to haul out the boat and drive up to Orcas Island to begin our week-long San Juans vacation.
- · Yesterday was my first post-bed/chair-issue-resolving infusion and I arrived just before 7:30 and without having to say anything they gave me a lovely bed in the new wing with a memory foam mattress AND a door that closed all the way. Bliss. Of course, my next one will be mid-morning after the doctor visit, so, fingers crossed, but I don’t hold out too much hope. Still, most of them should follow the new plan.
- · We helped a friend move and had a small gathering to warm our new deck, and, perhaps most significantly,
- · We decided to delay building on Orcas for about five years.
Thursday, June 16, 2011
More Tying Up Of More Ends
Since it's pouring down rain at the moment and I'm 38, not 28, and I've never liked being inappropriately wet, I'm going to write in my blog instead of taking Shadow out for her first ride of the season. Weather report claims that tomorrow will be sunnier; Shadow—that crest of chunk you're building up along your mane? We're going to start getting after that tomorrow.
At my last stop yesterday afternoon, the Conoco station at the junction of 26 and 395 (I bought a Coke Zero which I hadn't had before—note—I think it tastes like artificial sweetener—and Gardettos Select Premium Rye Crisps or whatever they are, which are so crunchy my vision judders when I chew them), I received an email on my phone from my scheduler at the SCCA (my phone is now only functioning as a clock, which is quite useful, and a camera, which is less so). A solution has been found for my bed situation! Starting with my next infusion and continuing on, my appointments will be at 7:30am, first of the day; they will be scheduled for 2 hours; and there will be a note in my file saying that I need a bed. I was relieved, pleased, and . . . abashed.
I've been very good at asking for what I need for my physical health—confident and secure that my requests are reasonable and appropriate . . . but really not good at asking for what I need for my physical comfort, maybe because comfort seems so luxurious? And this cancer path is supposed to lack luxury? Besides, who am I to say that my comfort is more important than someone else's? And when someone (or at least three someones) take time to figure out a way for me to be comfortable, well, I'm very glad, and I'm going to enjoy the bed, but I also feel beholden. And these people were simply doing their jobs. I don't want to dwell on it too much, but it made me think: if I, who grew up pretty indulged and very well taken care of, feel guilt requesting and receiving simple gifts—which may not even seem like gifts to anyone else—how might people feel who didn't grow up learning how to accept gifts? It might be, psychologically, a very difficult thing to be welcomed into a new environment and lavished with care and attention and belongings and relationships and, yes, expectations for response, if you weren't used to it.
I hadn't talked about this at all before, so it will just be two loose ends tied together—I recently received in the mail some recall notice from Toyota about my accelerator pedal and driver's floor mat. I skimmed the letter because I wasn't at all concerned about it, and read only that the floor mat, if wrong or not installed correctly, could get in the way of the pedals. Well, I'm pretty sure it's installed correctly. Anyway, I swung by Toyota of Seattle when I was in getting my hair cut recently, to have them check the floor mat so that I wouldn't have to make an appointment, and the guy told me that if I received a letter, it meant I needed to get my accelerator pedal replaced, and that I was at risk of it sticking and driving me into a brick wall or whatever if I didn't. That was two weekends ago, and I haven't had a chance to take the 4-Runner in for care. So, instead, I've been thinking about what I would do if my accelerator pedal did stick. I thought about this a lot on my 6-hour drive over here yesterday. In all the histrionics about these sticking pedals, I cannot remember a single suggestion of what to do if you find yourself barreling down a busy freeway (or winding country road), unable to slow down.
The first thing I would do, on my way to turning on my hazards, is turn the engine off. I would then hit my hazards and coast, as quickly and safely as possible, to the side of the road. I would then put the car in neutral or park, and turn it on again to see if the engine started racing, or if everything was back to normal. Depending on the outcome of that test, and whether or not I had a cell phone signal, I would choose my path. I thought about it the most when I was punching the accelerator to pass someone going under the speed limit, about 3 times—since I really did set my cruise control at the appropriate speed and stick with it—and, I will say, 4-Runner comported itself very well and got a respectable 24.3 miles per gallon on the way over, and performed no shenanigans trying to run away with me.
And here I am in Idaho!
Tuesday, June 14, 2011
Tying Off the Current Loose Ends
Let's see . . .
Beds in the Infusion Room: I have a call in to Dr Specht's nurse at the Seattle Cancer Care Alliance, and she is going to be looking into what I have to do to have a bed, every time I have an infusion. Do I need to switch days? Go at the last minute in the evening? Switch weeks so my three-week cycle is a different three-week cycle? Go early in the morning, but have a permanent note in my file that says I get a bed? My initial scheduler, who picks the day and puts me into the system, DOES, it turns out, have the ability to change my preferences from the automatic 30-minute Herceptin infusion to my 90-minute one, and she forgot this last time. However, that was obviously not the only element at play last week. Also, I asked the Occult why this chair/bed issue was SO difficult for me, and it said that I have a tendency to worry so much about other people's comfort over my own that I occasionally do myself injury (psychological in this case, but real nonetheless). I had been desperately hoping someone else would just grant me Full-Time Bed Privileges, but I have to learn to FIGHT. for my RIGHT. to infuse comfortably—and I do have that right. My bed is out there; and it will be found.
Needle to the Eyeball Part II: I had my one-week check-up this morning where my right eye alone got to be dilated—the one-off dilation, with its attendant nausea and equilibrium issues always being a joy to experience. I spent about an hour in the waiting room after the drop was administered, bored because the video is still truncated, and also it REALLY doesn't work to try and read or do any other close work when only one eye can see it—very discombobulating. But I was actually happy to be bored, as I haven't had much of a chance to just sit and stare at varyingly focused nothing in several weeks. And—YAY—the fluid pocket has already shrunk a little, and I have had one set of eyedrops removed from my regimen, so I only have to administer a total of three drops per day now! I think I can handle that . . .
Fasting Blood Test Results: My HDL and LDL were both where they should be (I can't find the paper where I wrote down the numbers—because it was a scrap of newspaper and therefore tidied away when we had last-minute dinner guests last night—and the official letter hasn't arrived yet), and my triglycerides were slightly high (damn that all-fat diet), but no one is worried about them because I am in such good physical condition. I, too, am not worried about them. My fasting glucose was normal. My Vitamin D was actually quite high after supplementing for several months—84 (that's the D-level, not the number of months)—and so for the moment I'm stopping all supplementation except for Nature's Supplementation (i.e. the Sun, should it choose to appear).
Old Blogs: It turned out Ian had created Orcas Estate and had given me permission to post, but THAT WAS ALL. SERIOUS ERROR IN JUDGMENT, IAN. Anyway, I now have full permissions to do whatever I want with the Orcas Estate blog.
Microsoft Word and its foibles: Word shut down on me again at the very beginning of this post today, and, for the first time ever, offered me a little pop-up window asking if I would like to have Microsoft run some diagnostics and see if it could fix the problem, as it had noticed that Office was shutting down somewhat frequently. I said "yes," even though, to my knowledge, Microsoft diagnostics had not ever even found problems, let alone fixed them. Well, lo and behold, a problem was evidently found, and something behind the scenes was claimed to have been done to fix it! Maybe so, maybe so . . .
The Boat: is in full vigor, raring to go. If only the weather and the schedules would cooperate.
Tomorrow: Off to Idaho and Jerome Creek for the first of several summer weeks! Dog and girl (okay, fine, I'm middle-aged now—WOMAN) heaven!
Friday, June 10, 2011
Blessing in Disguise
I had an absolutely awesome riding lesson this afternoon on my dear friend Gjinger, who was in a bit of an irascible mood, which only made me look all the better when she tried to buck me off every single time I asked her to canter and I didn't go off, and when she tried various tricks at the jumps to avoid going over them—even though she loves going over them—and I had the force of will to make her go over, every single time. Teri was very proud of me, particularly because I was doing a nine-jump pattern AND they were the HIGHEST JUMPS I've been over yet! Which means that a few were two feet tall, a couple were just under, and one was two feet four inches, in other words, up to my mid-thigh. AWESOME (and also, still, WAY below Olympic-level jumps).
Just after I turned out of the driveway and hit the road on my way home, though, I realized I was beginning to have a migraine. I could still see almost perfectly well, but I had a flash of anxiety and so I pulled into the local Shell station where Susan and I often stop for coffee (she was not with me today; she's in Mexico) and parked the car out of the way by a grass berm. I checked for more visual cues and they were scant, but I was pretty sure that would be changing anon. Without further ado I popped ½ a Clonazepam (the anti-anxiety med), and called Ian to let him know what was up.
There's no way it would've been convenient for Ian to come and get me and the dogs and the car out there, at 4:00pm on a Friday afternoon, and I told him I didn't think he would have to. I know the new and improved cycle of my migraines, and I thought it would be worthwhile to sit this one out and see what happened. "In fact," I told him, "I really think this is the perfect opportunity for me to see how I respond to a migraine when I'm on my own, you know, before I drive to Idaho next week."
I sat as my vision became more kaleidoscopic and ate some lunch—pepperoni sticks, some hunks of swiss cheese, and an apple—I was in a rush when I left the house—and Ian called back about 30 minutes later.
"The vision is pretty much normal again," I reported, "and nothing else seems to be going on . . . I'm going to go into the store and use the bathroom, then probably hit the road. I'll call you before I drive away."
"Okay, good," said Ian. "And if you need to stop again, you just do it, and we'll figure out a way to get you and the car home."
The trip to the bathroom was successful in its primary purpose and also the secondary one of interacting with someone—the clerk, who was happy to have me park in his lot while partially blind, even if I didn't buy anything—and the tertiary one of seeing how stable I was on my feet (perfectly stable). I called Ian back.
"I'm going to hit the road," I said. "I think I'm fine. I'll call you when I get home."
And I did hit the road, and I was fine. I set the cruise control at 60 and drove conservatively in the right lane (WHAT?!? THAT DOESN'T SOUND FINE AT ALL!!!). My hand started its somewhat expected buzzing/numbness thing as I switched from 522 to 405, and completed its cycle from thumb to pinky by the time I reached 520, when my speed slowed to 20 minutes/mile before reaching the lake. I made it home safely and called Ian to report before getting out of the car.
What I had initially realized/discovered/thought—that this was the Universe telling me I would be okay if a migraine happened when I was alone—was true. I sensed it coming on long before I was visually incapacitated; I pulled over to a safe place; I fed myself and medicated myself; it passed as usual; I continued on with my life.
And I'm no longer worried about the next one.
Thursday, June 9, 2011
Unprofessional
This morning I was at the clinic when the doors opened, 7:00am, to have my fasting blood draws (glucose and lipids) done. It was already broad daylight, but still early enough that the express lanes were quite expressy as I raced across the Ship Canal Bridge, after a brief stop at Essential Baking to pick up my post-blooding breakfast. Yesterday a scheduler for the SCCA called me to set up the 7:00am Port Access, and was able to move my Herceptin infusion back from 8:30 to 7:30, so that I could open that department as well. This all struck me as quite a fine plan, as it would allow me to be back at home just a little after 10:30, or more or less the time I'm ready to start thinking about the day, anyway. It would be like an infusion in my sleep!
Having finally realized that one of the only things I truly hate about my position in life as a cancer patient—hate with a passion—is sitting in those awful, uncomfortable, noisy vinyl chairs, I was excited for my first bed-anxiety-free infusion appointment. After my last visit I had asked when to come in for a guaranteed bed and was told that things were pretty open before 9:00. Well,
7:30 is way before 9:00.
Nevertheless, when I checked in at 7:25 I said, "They'll just put me in a bed, right, getting in here this early?"
"Why?" asked the check-in lady, someone I didn't know from my afternoons. "Are you having a long infusion?"
"I'm getting Herceptin, which is scheduled to be over 30 minutes, but I get it over 90," I said. "It just feels wrong to do it in less time, so yeah, I'm here for at least a couple hours."
"Oh," the check-in woman said vaguely. "Well, I'll mark down that you'd like a bed."
"Thank you," I said, and took my pager over to a seat by the window, where I could look out at the unfamiliar sights of both early morning and sun glinting off of southern Lake Union.
The lady called me back by name a few minutes later (they instituted the pagers to maintain more privacy but I guess I didn't get that this morning), and sent me to bay 45.
There are 43 sequentially numbered beds.
I went into the back, past empty room after empty room, to the chairs, just to be sure. I took one look, and turned back to the area infusion desk, where nurses congregate between patients and where bay assignments are made.
"Hi," I said, smiling, to the nurse currently sitting behind the desk. I like the nurses. They're very nice, they like their jobs, they're friends with each other. It's a warm and supportive place, the infusion room, an oasis in the blinding, skin-scouring, howling sandstorm of terror and sadness and pain that is often the cancer experience. I think it would be a difficult job. These people do it very well. "I want a bed," I said. "I came here early so that I would not have to sit in those chairs anymore. I hate the chairs," I said.
She smiled. "Oh, I understand. That's the lady in charge," she said, and pointed to another woman, up on a stool at the dry-erase chart, figuring out which patient to give to which nurse in which location. It was a woman I recognized from sometimes working in the check-in desk; she always complimented my engagement ring, so I had thought she was quite a fine person.
"No, there's nothing," she said shortly, glancing over her shoulder at me. "I have several people coming in later this morning who will be in for 3 and 4 hours."
"Whoa," said a different nurse, who turned out to be in charge of me for the day, "how about 43 right here? I'm just going to put her in there."
"I have someone in contact isolation coming in. Where am I supposed to put her?"
I started hemming and hawing, my guilt kicking in, but my nurse (I'm sorry, I really can't remember any of their names right now) said "No, Calin, go into 43. It's fine. Go and get settled."
So I went into 43 and my nurse shut the curtain, then lowered her voice and admonished the scheduler lady. I couldn't hear what she said, but I could hear the response: "I'm just doing my job! I am JUST doing my JOB."
I feel badly enough already for the cancer patients who are not as lucky as me. I know that people in that infusion room are dying. I know that people there are divorcing. I know that some are deeply in debt. I know that some have other diseases (bay 43, however, with only a curtain closure, was functionally no better than an end chair bay for someone in contact isolation who, I overheard, was happy to have a chair. I was not that problem.). I am probably the healthiest patient to pass through that infusion room. Hell—I might be the healthiest person to pass through that clinic full stop. But I have been passing through that clinic and getting jabbed and poked and irradiated, having my stomach upset and my dignity abraded, FOR THE PAST TEN YEARS SINCE IT OPENED, AND IT IS SHOWING NO SIGNS OF STOPPING.
I WANT A BED.
Part of the problem is that the amount of time allocated to "Herceptin" in the first scheduler's worksheet, the one who reserves the date and time, is 30 minutes for the infusion, which implies a visit of roughly an hour to the infusion room. Granted, that doesn't appear to be very long. I, however, take my Herceptin over a more leisurely hour and a half, and all things being considered, I am usually in my bay for around three hours anyway. This morning I was just shy of that, and there hadn't been any time for delays to build up. The infusion room nurses know my preferences and they know why—when I receive Herceptin faster, it makes my heart feel slightly, indefinably oogy. Herceptin, over time, is cardiotoxic. So far, my heart has been up to the challenge. I wish to keep it that way. And so the infusion room nurses are happy to give me a bed and let me hang out as long as I want. They don't care what the schedule says—to them I am a human being, not a time-frame.
But I have yet to figure out how to have everyone along the way see me as a human being.
Wednesday, June 8, 2011
You Blink, and Next Thing You Know There’s a Needle in Your Eye
I saw the ophthalmologist yesterday for my regular check-up which is, roughly, every four months. My right eye continues to be slightly troubling, with a cataract across the middle and fluid under the cornea. The fluid keeps building up from tiny, tiny (well, everything in the eye is tiny . . . I think I've written that before . . .) hemorrhages in the eyeball capillaries, and as I am absolutely worthless at keeping up with my fluid-reducing eyedrops (a total of 7 prescribed per day, from two different bottles, and I have to wait at least 2 minutes between drops . . . it's a math problem I've never even remotely worked out—I think I've had 7 drops maybe three days total), at best my eye has been stable and at worst, the fluid builds up more.
I like my ophthalmologist's office. The waiting room is full of the elderly (because you're supposed to be in your 80s when you develop eye-issues like mine, and it's 10:30am when I'm there, so you're supposed to be retired); there's free coffee (although I am usually still nursing my own from home); and there's a flat screen TV cycling through a series of vaguely disgusting informational videos about varyingly disgusting eye conditions and their remedies. The office is also the most efficient medical facility I have ever had the pleasure to be associated with. Which is to say, I actually experience pleasure when I'm there, simply because the efficiency is so satisfying to participate in.
Yesterday's visit had the added bonus of a small world encounter: Holly, one of the techs, and I were chatting about what I'd been doing lately, which was not going to someplace fabulous like Necker Island, but was assisting in deck replacement. "Oh, my grandfather needs his deck replaced—I was going to see about doing that this summer," she told me. "I fell through it last winter and really bruised my leg. He lives up in the San Juans, and it was really snowy for a little while this winter."
My ears perked at the mention of the San Juans.
"He's about 80," she went on, "and I've been warning him to be careful. We might need to get a barge to get the lumber out there, though," she mused.
"Oh!" I said. "He lives on one of the islands not on the ferry line! Which one?"
"Crane Island," Holly said dubiously. No one has ever heard of Crane Island.
"Your grandfather is not Tom Temple, is he?" I asked, pretty sure the answer was no, but having to ask all the same, as Tom is the brother of A in Idaho, of K&A, my third parents and owners of the Horse Paradise that I am lucky enough to take care of on occasion, and Tom lives on Crane Island (along with, it turns out, Holly's grandfather and two other families. Crane Island is a stone's throw off Orcas and very small).
"No," said Holly, "but I know Tom Temple! My grandpa's boat engine wasn't working once when we were up to visit and Tom ferried us across to Orcas in his boat!"
Yep, we nodded, it's a small world (and the more I learn about it, the more I think Tom Temple is at the center).
I went back out to the waiting room while my eyes dilated (which really messes up near seeing but doesn't get in the way of far seeing, so they let you drive recklessly away from your appointments) and learned about cataract surgery and astigmatism . . . over and over . . . the video seemed to be missing some of its sections yesterday . . . and then was called back into a treatment room. Dr Myers came in to look at my eyes—brisk, businesslike, but also, I've found, with a good sense of humor—and told me the fluid was a little worse than last time, and she'd like to try a steroid treatment again. Would I like to do it that day, or schedule it for another time? A brief vision of my calendar for the next two months flashed across my mind, wide swaths of time and days completely blacked out, as if the censors had gotten after a war-time letter full of army secrets with a jumbo Marks-A-Lot.
"Oh, let's do it today," I said.
"Okay," said Dr Myers. "I'll be back."
A different tech was in the room with me now, and suddenly I had a realization. "Wait a second," I said. "This is going to be another needle to the eyeball, isn't it."
"We like to call it a 'micro-injection'," she said.
"But that's really just a shot to the eyeball."
"Yep, it is," she said. We were both laughing about how utterly awful this sounds, and I reminisced about how you really can't close your eye when they're trying to put a needle in it, as I learned the last time. Men, she told me, pass out way more often than women, by the way, when their eyes get poked. "I'll go get a couple things ready and check with your insurance company and I'll be right back," she said, and zipped out of the room.
Within 3 minutes—not enough time to work up even a whiff of an anxiety attack—she and Dr Myers had both zipped back in, and within the blink of an eye—or rather, the much not-preferred non-blink of an eye—the steroid was injected and I was free to go, due back in a week (another swipe of the Marks-A-Lot) to make sure I haven't developed glaucoma.
I'm feeling just fine today, aside from the brief sting of the antibiotic drops that have been added to my regimen for 7 days (those I am being SURE to administer); and the dark floater that has been careening around my field of vision (I was told to expect this), occasionally causing me to bat at my head, trying to wave away non-existent gnats.
The cataract is actually smaller. I didn't know they could do that, and I'm happy to hear it.
Clarity of vision—that what this whole journey's about, right?