So I'm still feeling a bit of nausea these days, but the Compazine worked well enough this morning for Ian and me to go and do some rock climbing, which was definitely fun. My hands have been feeling pleasantly abraded today. Later on, I took a stroll with the dogs, where a daring squirrel raced across the sidewalk an inch in front of Hoover's nose, causing him to go briefly apeshit, just long enough to pull actually out of my hand and knock me into a rock in someone's garden. My ankle is now unpleasantly abraded. I then had my infusion—30 minutes late getting into the infusion room (which meant I sat in the waiting room for an hour after my blood draw), but at least I had a bed when I finally got there. And I was able to get my tumor marker results: 49, down another 5 from last time. I feel like I'm now within spitting distance of normal . . . at least as far as my tumor marker test goes.
Wednesday, April 29, 2009
I was finishing my Gyrotonic workout on Monday, doing my Upper Body Opening of shrugs and yawning circles, and suddenly I felt like I was going to throw up. I didn't feel nausea, really. It wasn't like being carsick, or being too drunk, or having food poisoning. Instead, it was almost mechanical: my body now wants to purge. I stopped stretching, and stood up and went to the bathroom and had a couple cups of water, and cleaned up my apparatus and went home. My body did not purge, and in fact I felt mostly okay Monday night. On Tuesday morning I had the same feeling though, and eventually took a Compazine (trying to avoid the more effective but more constipating Zofran) and lay down on our guest bed for awhile, trying to release the upchuck need, without actually upchucking. While lying there, I thought about all the reasons why I could finally be revisiting last spring's symptoms, for real.
Option One is that I had just, Monday afternoon before Gyrotonic, gotten my MRI rescheduled (for 5 May, from 1 June), and so anxiety about that had pretty much infused my psyche, conscious and subconscious. I know I had told Dr Jason, a week or so before on the phone, that it wasn't going to stress me out, moving that appointment up, but it turns out I was lying. I blame the full-brain radiation for that lapse in morals.
Option Two is, of course, the possibility that the tumor pressing on the top of my spinal cord has, in fact, grown again.
Option Three is that my brain and body are simply revisiting, as a result of the craniosacral work I had done last Wednesday, the physical trauma of last spring—because it was trauma. Frequently with the subtle kind of bodywork that craniosacral is, old traumas, occasionally years old traumas, are briefly revisited as the body completely heals. A broken bone from 4th grade might ache again for 24 hours. A scar will itch and burn. And, perhaps, the mechanics of puking will recur, all on the path to full recovery.
I was actually pretty confident on Option Three this morning. When I went to bed last night, I felt weird enough that I wasn't sure I would feel comfortable driving out to Woodinville this morning, and I was prepared to take the $62.50 loss on a missed riding lesson. However, I woke up feeling well. I got out of the house slightly earlier than in recent days (necessary, because my instructor has kindly started my lesson late every week for about a month now), made it to the barn on time, and had my horse groomed and saddled and was in the arena warming up before my instructor came. The lesson was great. I felt strong—stronger than I have in probably 18 months or more—and my lesson ended because it was time to end, not because I was tired. In fact, my right hamstring started to twinge as I came around the arena, posting, for my last circuit, and I felt like I was starting to actually build new muscle—recovery is over!
But then in the car on the way home, after eating my other half of a PB&J (a little less sticky without the honey) and finishing my latte, I suddenly, on 405 right before the merge onto 520, felt the mechanical need to puke again. I didn't puke, but the sensation did make me anxious, and I've felt my old familiar disconnected self ever since. I took the dogs to Magnuson anyway and we had a good time (except when Hoover ran snarling at a Weimaraner and scared the bejeezus out of her—he seems to have twin nemeses: Corgis and Weimaraners), and I'm home now and I haven't thrown up. I actually feel a bit more normally nauseas right now. I don't know if that's a relief. At any rate, I'll have more information Tuesday next.
I should share that, a few days after meeting with Witch Doctor Dan and feeling absolutely great—relieved, well, present, emotionally normal—I had a talk with Dr Jason about things I'd experienced and emailed (before meeting with Dan) to Dr Specht's nurse. The nausea and the migraines didn't concern him; what concerned him was the pinched nerve I experienced at Easter supper (which hadn't concerned me—it was almost an afterthought that I had mentioned it at all). Anyway, since that conversation, which took place 18 April, I have again been experiencing anxiety/disconnectedness, all of which went away after seeing Dan. The main difference is that I have not been too terribly anxious about everything, like I was before; rather, I have been understandably anxious about very specific, ominously familiar, things.
It turns out that cancer recovery is not all fun and games.
Thursday, April 23, 2009
Monday, April 20, 2009
I just got back from an appointment with the ophthalmologist where she did, in fact, stick a needle into my eyeball. The right eye hasn't really been responding to the steroid drops, the steroid injection under the brow bone, the first session of craniosacral therapy, or the Witch Doctor, and so we decided it was time to do something a bit more extreme.
"Just so I'm straight about this," I said, after Dr Myers-Powell described, in somewhat oblique terms, what she was going to do, "this is where I get a needle actually into my eyeball. Right?"
She laughed. "I really don't like to call it that," she said. "And I am very careful to make sure you feel nothing but pressure."
"Can I hold a barf bag in my lap?"
"If you really want one! Look," she said, "we can plan this for another day."
"No," I sighed, "that's okay. Let's do it. I don't see any reason to wait."
The procedure did not actually involve her withdrawing fluid from the eye; rather, she injected a medicine (Avastin, primarily used as a chemotherapy drug for colorectal cancer) designed to toughen up the teeny blood vessels and dry up the liquid from inside. My eye was numbed with several drops over 15 minutes preceding the actual needle, Betadine was spread over the closed lid, then she held my eye open, put a drop of Betadine on the white of my eye, and in two presses, inserted the microneedle and the medication.
I had to have my blood pressure taken before and after (100 over 60—normal for me), then I was set free on the roads of Seattle. I am now back home, wearing sunglasses in a dark room, waiting for my monthly dilation to return to normal, and feeling occasional remnant chills running up my spine.
Friday, April 17, 2009
I saw Dan, my Witch Doctor, Tuesday at noon. "How've you been?" he asked as we walked back to his room at the chiropractor's office where he rents space.
"If I may be completely frank," I said, "for the last three weeks I have been a complete fucking basket case."
He chuckled, catching the spirit of my outburst, but he also knew I meant it. I had been a complete fucking basket case.
I mentioned this a few weeks ago, right after it happened—right after my life went from seeming pretty normal and liveable to seeming fraught and terrifying and distant. I didn't want to go into it any more when I was in the throes of the anxiety, because, well, it really sucked. And I didn't want to just sit here and write about my life really sucking. And even during the anxiety, I wasn't about to do absolutely nothing. But now that I seem to be pretty much through the haunted forest, here are some of the things I've been experiencing.
- Lots of migraines (primarily the visual part, not the nausea and hurting head part, except once).
- Lots of low-grade nausea, throughout the day and throughout the week between treatments. Much more than I'd been experiencing by the end of my Taxol, which was none.
- Blood sugar issues—intense hunger and hunger dopiness, and then a bit of food coma dopiness as well, as soon as I'd eaten. No ability to function without regular intake.
- Left inner ear issues left over from my cold in March, which caused some equilibrium issues, and a scary episode of vertigo.
- A general feeling of disconnection from the world, much like being drunk, but minus the slurring words, the stumbling, and, of course, the fun.
- My right eye is still a mess—fluid under the cornea and a growing cataract.
Dr Jason keeps saying, when I see him, "You remember how you felt last year, right? When you were sick? Well, you tell me if you're starting to feel that way again." And then Dr Specht said, "Now all we need to worry about is your brain!" and I put those two things together and thought Check. Done! Worried about the brain!
So for the last three weeks then, up until seeing Dan on Tuesday, every single thing I was experiencing was about my brain. The migraines, even though I was feeling incredibly stressed (a trigger) and I've gotten them for almost 20 years, long before the cancer, they were all about my brain. The vertigo, even though I've had experiences with my ear being plugged before, and even though I could induce vertigo by plugging my nose and blowing, that was all about my brain. The nausea was OF COURSE all about my brain, because that, even though it felt different last year, was, for a long time, the only symptom I had that anything was wrong. And then I rationalized that yes, I remember how I felt last year, but my body is, in fact, much fitter right now than it was a year ago, and so OF COURSE it will feel different, and so ALL THESE THINGS I'M FEELING MIGHT JUST BE MY BRAIN!!!
I tell you, it was exhausting.
I am not against having emotional responses to things, although in general I think I'm pretty even keel—what was untenable was having weeks of completely uncontrollable emotional responses. I did an I Ching reading right before seeing Dan, to get some insight, and it was
"KEEPING STILL, MOUNTAIN: Still your emotions through meditation. Receiving this hexagram is a sign that you need to quiet your emotions so that you can think clearly." Oh, really.
ANYWAY. It seems that the main issue, according to what Dan could ascertain, was that something was up with my amygdala, the little part of the brain involved in emotions of fear and aggression. Generally, when it's functioning correctly, a stimulus comes in and the amygdala says either "yes, FEAR THIS!" or "no, I think you can let this one by." My amygdala was saying only "FEAR THIS," every time anything even remotely concerning, or even simply unusual, occurred. As a result, my system was being flooded with adrenaline, which made me hungry and contributed to the migraines. Dan did his tapping, cleared up a few other issues, and I have been feeling increasingly normal ever since.
I have spent at least 30 minutes in meditation each of the last three days to help ease out the last of the tension. It seems that even the dogs like the calming atmosphere in the house during meditation time.
I cannot describe how relieved I am. I am no longer afraid of interacting in the world. I am not wondering when the next bout of dizziness is coming, and whether or not it signifies growing brain tumors (I am, again, confident that it is not.). I am not hanging onto my equilibrium—both physical and emotional—with the extremities of my will.
I am, once again, living, and loving, life.
Thursday, April 16, 2009
My hair started growing back this last week. My eyelashes have been s l o w l y creeping in for several weeks, and are at the point right now where it looks like I'm wearing mascara, because for the first time in months my eyes have some definition. My leg hair also ramped up a little (which means I'm taking more frequent showers, to shave, if for no other reason). The rest of my hair, however, was still pretty dormant. I've been estimating, based on previous experience, that I will be looking healthily butch by July, and won't feel the need to cover my head in public anymore, but I haven't had the full-brain radiation before, and I have no idea whether or not my hair return will be normal or not. In fact, I wasn't sure it would grow at all. There are also 10% or so of people on Navelbine who lose their hair, so it was, in my mind, in no way guaranteed that mine would start growing while I was still on treatments.
To my pleased surprise, about 5 days ago I noticed that the top of my scalp, previously smooth and strangely shiny, like pink patent leather, had thousands of teeny, tiny little bumps on it. Could it be?!? I thought. I didn't say anything the first day, and the second day I could see an even more pronounced bumpiness. "Ian," I said, "I think my hair's coming in! Look at the top of my head! Do you see bumps?"
Being slightly less obsessively aware of every small detail of my anatomy than I am, Ian was not so sure that what he was looking at was any different from anything he'd seen for the last several months but, being the diplomat that he is, he was noncommittal rather than outright negative. I knew though, I knew, and sure enough, two days ago, when I looked in the light just right, I could see thousands of teeny-tiny little hairs, almost clear, furring the top of my head.
Most of us are aware of what hair is like when it's growing in after being shaved, and this is not like that at all. When hairs are shaved, they are cut off, blunt, at the surface of the skin. These hairs, though, are all entirely new, and as such, are very, very pointy, so that they could break from the follicle through the surface of the skin. Since identifying my head hair as definite hair, I've looked closely at the rest of my body, and it's growing back everywhere. I have occasional itchy spots, where the sharp new hair has gone astray and grown in instead of reaching for the sun. My eyebrows are also making a comeback, although mostly in the places where I will be plucking them soon. And I've already pulled out a few mustache hairs, which were quite stubborn, as of old, instead of coming out at, basically, my whim, as in recent times.
It will be interesting to see what the hair looks like this time around, when it's really back. The last few times, it's grown in curly initially, then over a period of about six months has returned to its usual board-straightness. Even though the top of my head is covered right now, though, doesn't mean that the hair will be as thick as before the radiation. We shall see. In the meantime, please enjoy the following close-ups.
Eyelashes! It's weird to take a shower without them--lots of water gets in the eyes.
Look at the very edge of my scalp, and you can see the wisps of new hair. The bigger hairs are the few that never fell out. Also--this is why hi-def TV is so much not fun for aging stars and news reporters.
Tuesday, April 14, 2009
The other day I was cooking dinner for friends and cleaning the kitchen at the same time. A dish with some cream cheese scrapings in it was sitting on the counter over the dishwasher and the dishwasher was open, the bottom drawer pulled out, the clean dishes halfway emptied. I left the kitchen for a moment and Hoover made his move. Suddenly, there came a tremendous CRASH! and I ran back in, in time to see Hoover high-tailing it out the partially open kitchen door. On the floor of the kitchen, several feel from the open dishwasher, lay the drawer from the bottom of the dishwasher, littered with smashed crockery. I'm guessing he tried to stand on the open drawer of the dishwasher to get at the cream cheese bowl, and of course that backfired. Dramatically.
Four bowls gone in one fell swoop.
Thursday, April 9, 2009
Recently, on an infusion morning, Ian and the dogs rode with me down the hill to the Essential Baking Company, so Ian could get coffee with me then walk the dogs home for their morning constitutional. Ian had put his stainless steel travel mug in the upper breast pocket of his jacket, which would've been a fine place for it, as it left his hands free for wrangling dogs and hugging me goodbye, except that he forgot about it when he was putting some things in the car for me and it tipped out and spilled coffee all over the front passenger seat. This was not actually a big deal, because the seats are leather and very wipable, and no one was going to be sitting in the passenger seat for a while anyway.
A week or so later, Ian was driving and found the turn indicator lever to be a little sticky on top. "Oh," he said, apologetically. "I'm sorry—I think when I spilled coffee all over it must have gotten on the turn signal."
"No, it didn't," I said, a touch sheepishly. "I've been eating a peanut butter, banana, and honey sandwich while driving to my riding lesson."
It seems we are perfectly capable of sticking up a car all on our own.
Wednesday, April 8, 2009
A few years ago, I developed an intense fear of flying. This really sucked, because I have an intense love of travel, and there are lots of places in the world that I want to visit, and that I don't want to spend my days getting to instead of enjoying while I'm there. In short, flying, for me, is not optional (I will say that two horrifically turbulent trips across the Pacific—one to Hawaii and one to, or more specifically from Thailand, contributed to my fear). Eventually, I came to realize that virtually all my fear of death associated with cancer was transferred to flying. Death is something I have virtually no control over (and I don't want control badly enough to commit suicide—at least right now. Lest you readers worry that I am contemplating suicide, let me assure you, I am not. But if I am ever truly in agony, and my condition is truly terminal, I might consider cutting the end short.). And an airplane flight, likewise, is something I have virtually no control over. What I can control is my decision to board a plane—no flying, no dying from flying. But, I can also control my response to my irrational fears, and fly regardless, and still visit places that I love, and so that is what I chose to do. Over the last few years, as I have worked through my feelings about death, I have stopped being afraid of flying, and not only because of booze (I will occasionally have a Jack and Seven on the plane or before boarding, but only at time-appropriate hours.).
Lately, I've been thinking about my irritation—outright anger, sometimes—at other drivers on the road, and where that's coming from. After all, in general I am not an angry person. I can be angry, and I have a scary voice that I can employ if necessary (or if I want to), but I am, in general, pretty easy-going. I am also a big fan of driving—the mechanical part of driving, that is (and I really miss my stick shift . . . at least until I try to tow the boat for the first time), not the other-people-in-the-way-of-where-I-want-to-go part. But, where is this anger coming from?, I thought. Because it's pretty pointless.
I'm sure I've been a screamer at other people on the road for longer than I've been dealing with cancer, and I think that it used to be simply arrogance. There's an element of that still—I'm pretty sure that if everyone drove like me, then we wouldn't have any problems on the roads—but I think, at least in recent years, there's more to it than simple obnoxiousness (on my part).
This is what I came up with: My anger at the other people on the road happens when they do things that either 1) inconvenience me or 2) do not follow the laws that are clearly set out and that I believe they should follow. The obvious connection here is life in general, and my life specifically. It seems pretty clear that my life has, in fact, been inconvenienced (much as I don't feel it now, mostly) and has, definitely, not followed the "laws" that I thought it should follow (i.e. normal 30-something with kids and career, no cancer, or indeed any other major illness, until I was 70, if then). However, I know there's no point in being angry at that—I've thought about it a lot over the last ten years, and I've concluded that if I want to live my life the best I can, regardless of what it throws at me, then I need to find my happiness where I am, right now, and not yearn for it in some nebulous other life that I may have imagined for myself. And so, all the frustrations and fury that I don't attach to my life—to the cancer, the chemotherapy baldness, the missed trips to weddings, childlessness, the proximity of my mortality—I instead hurl at drivers around me, in my sphere only fleetingly.
From now on when I'm driving, I'm going to work on merely observing and responding in the way that best accommodates me (i.e. simply change lanes, without getting worked up and yelling at the person going 59 in the fast lane), with a minimum of petulance, annoyance, and self-righteousness, as I've been doing with my cancer, and my life.
So I recently emailed my nurse and asked what, exactly, the tumor marker test measures, and she called back the other day and told me this, which isn't a huge amount of information, but was all that she and Dr Specht knew. Basically, the test is a measure of the amount of a certain type of protein in the bloodstream, a protein sloughed off by tumors. No one knows, however, if it is only present when there are active tumors. We are assuming it's not; that dead, or maybe even dormant, tumors/cancer cells would also slough the protein. It turns out that there are a lot, a very lot, of things we don't know about cancer. Well, duh.
Tuesday, April 7, 2009
Today is the third glorious spring day in a row, and I decided to take the dogs for a long walk. Hoover has had two days at the park recently where he's been a little too aggressive for Ian's and my comfort, both days where he really hadn't had any exercise until we arrived at the park, around 3:30 in the afternoon. Since, aside from those times, he's been invariably playful and fun at the park (although not so much on his leash), I decided that 3:30 was simply too late in the day for him to not have had any exercise. I.e.: my fault, not the fault of the dog. So today, to test my theory, we walked to the Woodland Park off-leash area.
This was a walk of 4 miles and change, round trip. Nevertheless, when we arrived at the park, old Spackle (with his two rebuilt hips and his rebuilt knee), surprised to be where he was, and assuming I hadn't brought one, immediately picked up a filthy ball and commenced dropping it at my feet. I had brought one, however, and the Chuck-it from the car, and as I pulled it out of my bag, Hoover went off at a surprisingly leisurely pace to investigate.
It turns out that a 2+ mile walk, mostly uphill, takes all of the aggression, and even most of the play, out of Hoover. That's a bit of an exaggeration, of course—he did play with dogs during the ten or so minutes we stayed—but not with his usual single-minded intensity. Spackle did fetch with his usual single-minded intensity, however, so I only threw the ball about a half-dozen times, and then I told him to sniff dogs, get a drink, and save the rest of his strength for the long walk home. Both dogs are lying on fleece on the floor of my office, totally wiped. I love it.
My strength, I'm pleased to report, held up marvelously. I felt healthy and fit, my legs loved the uphill striding, my heart and lungs never had to work harder than moderately (although I did not have my oxymeter to check), even my feet slapped four miles of asphalt painlessly. Yes, I give my body an A+ for functionality. Now, if I can only bring my emotions and spirituality up to the same level of competence, I'll be unstoppable.
Not that I can imagine what I might be doing that someone would want to stop, of course.
Sunday, April 5, 2009
Weather here in the Northwest has been a bit peculiar this year—colder and drier that usual here at sea level, and, from what I understand, drier than usual in the mountains for January and February. I hadn't really gotten my act in gear for skiing in the mid-winter, which worked out well for me—come March, when I was ready to go, the weather had changed and conditions were thickly snowy in the mountains. What also worked well for me, you might remember, is that there was at least a thin rime of snow in Hobart in March, too, so when I failed to bring half my ski gear with me, I was still able to get a couple turns in.
Well, snow continued to fall in our fair mountains, so Ian and I decided to give it a go together, and yesterday, we were wildly successful. We went to Crystal, of course, my favorite (and most familiar) resort in the area, which meant dropping the dogs at Mom's on the way, but we were in no hurry to get up there—we figured 3 ½ hours of skiing would probably do us just fine, so we arrived around 12:30pm and bought half-day passes for $110 (total), for a savings of $10. It turns out it's really not a savings to buy a half-day—rather, it's a huge bargain to ski an extra 3 ½ hours for only $5 more, if you're willing to leave Seattle at 6:00am. Nevertheless, the snow was new and plentiful, the azure sky glowed over snow-laden evergreens, and the lifts, all high-speed, ferried people up the mountain so fast you barely had time to remove your pole straps from your wrists before you were whisked away.
I was cautious on my first couple runs, and indeed, felt that my leg muscles just didn't have the emergency reserves I was used to employing to keep my balance after an unexpected bump, or to execute the hockey stop to blow snow over Ian. I thought, resignedly, that maybe I was just going to be an average skier this year, that skiing only one time last year, and my hospital stay, and my steady but nevertheless slow return to strength this year, just weren't enough for me to feel like my old zippy self. After a few pleasurable but not spectacular runs, we stopped at the lodge for water though, and after that pause, my legs suddenly came alive again. I whipped down the next hill, legs pistoning, wind and scenery rushing by, Ian left in my spray, the exhilaration of life singing in my chest. Sure, the run I was on was a blue square, but it had a tiny bit of bump action for interest. And I flew down that hill.
Thursday, April 2, 2009
So today I had my second infusion of the new regimen, with Zofran beforehand to stave off some of the low-grade nausea I felt during the last week. I remembered, at some point a few days ago, that part of me feeling weird and a bit crappy was no doubt because I basically started chemotherapy last week, at least as far as my body was concerned. I'd been off for weeks, and was feeling pretty fly, and then WHAMMO. Hit in the guts with toxins again. The fact that my mind saw it as a continuation, and a milder one at that, does not mean that my body felt it that way.
I didn't get my tumor marker value last week, because the blood was drawn minutes before I saw Dr. Specht and it generally takes 3 or 4 days to calculate the number, so I saw it today. 54, down five points from 59 a month ago. Normal range, still, is 0-37. It begs the question: what, exactly, is being measured? Is it just those little partying rogue cells that didn't show up anywhere specific in the PET, but are still swimming around pretty thickly? Do dead cancer cells still being sloughed affect the counts? I'm assuming the spots in my brain have something to do with it, too, because clearly cancer cells can cross the blood/brain barrier.