Tuesday, March 31, 2009

Relief Surprise

Since Saturday morning, I have felt a bit disconnected from the world, as if I'm drunk, but minus the slurred speech and diminished motor control. Minus, as well, and this is the surprising part, the goofy happiness I generally feel when I'm pretty well sauced. I imagine there are a lot of reasons why I'm feeling as if I'm not quite here. One is certainly drugs. Last week I had radioactive glucose, and radioactive iodine, and some other radioactive substance. I also had a couple blood draws, and a four-hour infusion of Navelbine, Herceptin, and Pamidronate (the long one), without any of the premeds designed (remarkably well-designed, it turns out) to make me feel like I hadn't been pumped full of poison. I got a migraine Friday night—after my long week, and my good news, and my infusion—which actually progressed all the way to the nausea and headache part (99% of the time I just get the visual distortions). I took a couple of Tylenol PMs and slept through the night relatively well.

Saturday, though, when I got up, I felt this weird disconnect. It actually felt pretty normal to be tipsy later in the afternoon at N&Ks, celebrating. But the haze faded back in as the Maker's faded out. I am going to be getting some premeds Thursday when I get my next Navelbine and Herceptin, so it'll be interesting to see how next week feels.

The other reason I'm feeling disconnected from the world is probably emotional, though, and I really have no idea how it might be affecting the way things physically appear. I just spent 15 minutes sobbing in the car of my friend MS, and actually felt a bit more present at the end of it. But that feeling of actually being here, now, in this reality, has faded again a bit.

Here's the thing. For the last ten months, I've had the same job: healing from cancer. I haven't been at war with cancer. I haven't felt particularly nervous about cancer. It was, really truly, funny to me how bad things were last spring. Of course, I've undeniably enjoyed feeling better, getting my strength back. I've enjoyed watching my normalizing blood oxygenation levels and heart rate on my little REI climber's oxymeter. I have even enjoyed my infusions, with the Benadryl nap and the nice nurses and the bed with the warm blankets and the relatively-good-for-an-institution free lunch, and not having to think about or do anything else on those days. There are definite benefits to being in treatment.

And now, suddenly, all of that has pretty much been taken away, long before anyone really expected it to. I know it sounds perverse, but I have, in a sense, lost an intimate companion, and I'm left bereft. Now what?

Do I go out and get a job immediately? Add a second day of riding to my schedule, now that I'll have more energy? Start rock climbing regularly again? Or, do my responsibilities to my household change suddenly, now that I am "well"? And, those pesky brain mets, that seem to be non-problematic as far as anyone can tell for sure, are they dead? Dormant? Gathering their artists for another installation? The weird disconnectedness that I'm feeling, is that a precursor to major internal brain trauma (which is, of course, what I've been irrationally fixating on for the last couple days)?

So. Yes, I am, of course, thrilled that my PET was normal, that my cancer didn't put in an appearance. But I know that this is not the end of the cancer road for me. If I've learned anything from the last decade, it's that cancer is in my life, whether it's active or merely remembered.

I don't know why I'm so lucky that I still get to be here, still living in this exquisite world, still loving my family and my friends, my dogs, Ian. Life. I don't know why cancer hasn't killed me outright, why it hasn't maimed me, why it hasn't even, really, inconvenienced me. I don't know if this remission (I'm not sure that we can call it that with the brain the way it is) will be permanent. I don't know if it will be short. Basically, regardless of all the tests and meetings, I still don't know anything at all.

It's just a brand new collection of things I don't know, and at the moment that's proving to be a difficult adjustment.

Friday, March 27, 2009

New Drug Regimen

As of today my infusion drug regimen has changed. For the next couple months, I will weekly receive Navelbine, about 20 minutes to infuse, and Herceptin, about 30 minutes to infuse, for a total time (including flushing with saline and port activation and deactivation) of about 1 ½-2 hours in the clinic (as opposed to 4 or 5). I will no longer be getting any of my premeds (Decadron, ranitidine, Zofran, and, alas, Benadryl), because I will no longer be getting Taxol, BECAUSE MY PET SCAN WAS NORMAL.

What this means is that MY BODY IS COMPLETELY FREE OF ACTIVE CANCER. The CT showed that there are still polyps and nodules in my lungs, and the bone scan showed lots of sclerotic spots, as it has before, but the PET, which measures cancer activity, shows that everything is either dead cancer cells or scar tissue. This does not include the brain, however. Even a PET scan on the brain isn't very accurate for metabolism because the brain uses glucose so quickly in normal function, so we'll continue to monitor that with the MRIs and Dr Jason's expertise.

Dr Specht said a few notable things today:

"I can't believe, I really can't believe, that I get to deliver these results to you today!" and

"I wish I could take your response and multiply it tenfold and give it to all my patients!" and

"If you want to travel, you are free to go, just say the word. After all, you can always tell me, 'and just what are we treating?'"

There are a variety of reasons that I am continuing drugs at all—one is that it's pretty clear that my body tends to allow cancer if I'm not on some sort of therapy. Another is that, even though no pockets of activity showed up on the PET, the assumption is that there are still rogue cells roving about my body trying to get a party together somewhere warm and vital, and we want to keep killing off those rogue cells. I will probably stop the Navelbine in the next couple months and continue with Herceptin on its own (back on my old 3-week schedule) or possibly with a different addition; there are also a variety of pills, some with chemo, some with the Herceptin drug, that I might consider instead (obviously, if I don't have to be infused at all, I could take much longer to travel when and where my . . . uh money, and, I guess, full-time working husband, allows . . .). A third is the slim possibility that some of the medication is crossing the blood-brain barrier and helping keep my brain healthy.

Navelbine is supposed to be pretty low on side-effects, though—my hair should grow back (well, we'll see what happened to the follicles with the radiation), I probably won't need anti-nausea meds, and the slight neuropathy in my fingers (which has improved greatly over the last couple weeks with no Taxol) should continue to abate apace. I will still do some GCSF shots (the insurance company is happy about that, I'm sure!), and I think all the other things I'm taking at home.

This news completely outweighs the story I was going to write about yesterday's experience in the bone scan, which was this: right as the main scan finished, the fire alarm went off and we all had to evacuate the building (I was wearing loungey clothes from home, not a breezy gown). Turns out to have been only a burst water pipe on the 3rd level of the parking garage. My car was down there, but it didn't even get wet. So that's all that happened there. Oh, but also—so much more annoying than the person next to you behind the curtain wall listening to TV? The person next to you behind the curtain wall listening to her voice mail on speaker phone. Not just current messages, but saved messages, and then deleted messages. AYFKM?!?

Wednesday, March 25, 2009

New Level

Today has been a better day, although it looked like another ugh when I tried to leave the city for Woodinville this morning. It took me 25 minutes just to get on 520, which is about how long it typically takes for the entire trip. I stuck with it, though, calling my instructor to see if I should still come, and by the time she called me back to say "come along," I was literally 30 seconds away from the barn.

And then, I had an awesome ride. There was nothing particularly outstanding about the lesson itself—nothing more than walk-trot-canter around the arena, and over two poles on the ground, but somewhere along in the middle of the trotting, I stopped being aware of the effort of posting (rising and falling in the saddle with the gait of the horse), and sometime soon after I became aware that I had lost awareness, my body shifted into marathon mode for the first time in a year, and I felt like I could post forever. I wasn't even breathing hard—after probably 10 or 15 minutes non-stop—when I slowed down to walk a bit before cantering, and the cantering felt fluid and easy as well. I probably rode for about 45 minutes, but I felt like I could go on all afternoon.

So I figured why stop with horses? and I went rock climbing, for the second time this week, and started up our memberships again. And—I successfully completed a V-1!

And my eyes are better today. At least, my left eye is back to its pre-PET abilities, and my right eye is, I guess, as well.

So, yes, today has not sucked. It's day 20, and it seems that day 20 rocks.

Tuesday, March 24, 2009


Just ugh. I'm not feeling like my usual go-with-the-flow-life-is-good self today. First of all, my right eye is not overall blurry like it was yesterday during the numbing, but there haven't been any miracle clearings of the other issues either. Second of all, my left eye, since my PET this morning, has developed a clear—I mean defined—blurry spot of its own, smaller than the right eye (thank goodness), and not quite in the center of my vision. I can still see very well outside, and certainly well enough close up. I'll call Dr. Meyers-Powell tomorrow when she's back in the Northgate office and see if I should start the steroids in the left eye, too.

Third, the reason I didn't have a CT on my schedule for this week was because it took place just after my PET today, in the same big donut. I had been told, weeks ago, to expect this, but I forgot. I mostly figure that I have to be at the clinic anyway, so whatever they do, they do. Still, it was rather a nasty shock to have contrast to drink this morning. Cold, viscous, "berry"-flavored contrast, an hour before I'm usually out of bed. Fourth, the PET is the only scan that they can't use my handy-dandy Power Port for, so yes, you're right, I had to get an IV in my arm (I had to get one in my hand yesterday at the eye doc's). Of course, the first poke failed, and so John was called, who I may just request next time, because he is very good.

Fifth, the technician who came in to inject me with the magic antimatter was very upset to find out that I have a belly button ring, which is really easy to remove with a pencil-nosed pliers. Evidently, the metal distorts some picture. She wanted to know why no one had ever caught it before, and I said that I have talked about it for years, and that the only time I've ever had to remove it has been for surgery. She said they didn't have any tools in the scan room, and that she would go talk to the other technicians and see what they had to say. I pointed out that there was construction going on in the building (not to mention maintenance people). Anyway, she asked the PET people and they said, since it was pretty hard to remove, that they would let me keep it. Turns out that the PET procedure has changed since 2006, and now there's an X-ray component, and that is what is distorted by the metal. We shall see what we shall see. Sixth, as the magic antimatter tech was leaving, I asked her for another warm blanket, as it was chilly in the room and I was going to have to lie pretty much perfectly still for 45 minutes to let the magic, well, work its magic. I wasn't allowed to read, because that would pull too much of the markered glucose into my eyes (which I'm thinking happened anyway). As she was going out the door, she said she would bring one after a couple minutes, as she had to record some data. I knew as she turned away that she had already forgotten. Ten minutes later, shivering and feeling completely sorry for myself, I found that there was, in fact, a nurse call button wedged into the side of my recliner. I pressed it, and pretty much immediately a nurse appeared, and 30 seconds later had wrapped me in warm cotton and turned off the lights. Okay, so that was good.

The rest of the day has actually been fine, I think, except for the nebulous physical response to all the different contrasts (three, including the radioactive iodine also with the CT), and the fact that my first meal of the day was a small apple juice and piece of string cheese post-scan, followed by a latte and three doughnuts (I guess I had them on the mind). I really didn't feel like leaving the house this afternoon, and the dogs have been exemplary lie-abouts, even Hoover. They did get some afternoon rawhide chewing as a distraction.

So, the world isn't coming to an end. It's just been kind of low-grade sucky today.

Monday, March 23, 2009

Well, It Wasn’t Exactly in the EyeBALL

Had another appointment with the ophthalmologist today, which included redoing all of the scans, and a new diagnosis. My left eye is still fine. In my right eye, however, the pocket of fluid is a little worse, and I seem to be starting a cataract. I could tell that things were looking (or rather seeing) worse, so the fluid wasn't a surprise. I suppose the cataract is a surprise, but not really. I mean, what do I know, what to expect. The ophthalmologist actually twigged onto the full-brain radiation today, and now thinks that what she's seeing is more likely related to that than to my occasional low iron levels. I was pretty sure I'd mentioned it on my first visit if not my last one, and sure enough, it is in my file. Apparently now is about the time that eye issues will show up (as well as short-term memory loss issues and trouble multi-tasking. So far, nothing I'm experiencing mind-wise seems to be any different from any other over-30 friends. My logic skills also still seem to be fine, as I was able to successfully complete all the Mensa questions in the American Airlines magazine while waiting for our return flight from Dallas last week. I've been trying to work that in somewhere.).

Dr Meyers-Powell thought it was worthwhile to try something more, and she described a treatment where she pulls back right eyelid, I look down and to the left, and she injects a pocket of steroid into the eye socket just above the eyeball. This steroid, supplemented by eye drops, should bring down the swelling, and has virtually no side effects. The next step, if this doesn't seem to work, is the needle IN the eyeball procedure, which can have several side effects, including extreme horror and the worsening of the cataract. "Well, it may do that anyway," I pointed out. "After all, it wasn't here six weeks ago."

So I opted for the needle just above the eyeball. First I was given numbing eyedrops (felt very weird to blink), then she spread another numbing drop, using a cotton swab, onto the top of my eye under the lid, and the flesh there (I couldn't really feel this). Then I looked down and to the left, and she pulled up my eyelid and injected the steroid. I was supposed to only feel pressure. I felt a teeny, tiny sting. And then my eye hurt for about five minutes. The vision in it was already (and still is) blurry from the numbing drops.

Then they let me go, and I drove to Northacres Park off-leash and played with the dogs a bit, and then I came home. It's really amazing to me how much the brain can compensate for impaired vision in only one eye. It appears that I can see very well—I have my depth perception, I can read signs, I see goose families crossing the road in front of me in time to stop (well, I haven't had the need to test that.). But if I close my left eye, everything I see is blurred. But, I am still getting the depth when both eyes are open, and the left supplies the clarity. Very interesting.

Anyway, my new visualization for right before sleep is going to be a draining and clearing of my eye. I do not want that other needle.

Sunday, March 22, 2009

Thoughts about the PET scan

This is Ian writing. Calin's PET scan scheduled for Tuesday inspired me to ask her permission to be a guest blogger for a day and share a few thoughts about PET scans.

When Calin first had some PET scans in 2001, I became fascinated by the idea because I had a vague memory from high school physics that the positrons which form the basis for the PET (a.k.a.Positron Emission Tomography) are a form of antimatter. Indeed, positrons are the antimatter counterpart of the electron. Electrons are negatively charged and positrons are positively charged. When an electron and a positron bump into each other they are both annihilated and gamma rays are given off.

The idea of the PET scan, as I understand it now, is that you are injected with a bunch of positrons, which are magically attached to something like glucose or estrogen. Any cancer cells in your body will be growing faster than normal cells, and therefore taking up lots of glucose or estrogen (depending on what type of cancer you have). The positrons will therefore concentrate in cancer cells. They will keep bumping into electrons and getting annihilated, and the gamma rays given off by these annihilations (having been detected by a giant donut around your body) can be used to draw a picture of where the glucose, or whatever, was being taken up. Abnormal concentrations are likely indicative of cancer, as opposed to scar tissue left behind by dead cancer cells. The differences between cancer and scar tissue are hard to detect on other types of scans, so the PET scan will likely provide insight into how Calin's treatments are progressing.

So that's everything I know, or think I know, about the science of the PET scan. However, there's more too it than that. Reading about the science still doesn't get me past the fundamental question of “What the heck? Antimatter?!?”

To explore a slightly less scientific aspect of antimatter, I did some research in the form of viewing a 1967 episode of Lost in Space, called “The Antimatter Man” (you can view it here). This episode presents antimatter the way that I think seems more natural: as the stuff of which a parallel universe is made, a parallel universe filled with people who look identical to us, but are actually our nemeses, and who are bent on trapping us in their world and taking our position in ours. At first you may recognize them by their symbolically black and white patterned outfits (see picture below), but after they steal our clothes, only a telltale scar can reveal the difference (that and the fact that they act like evil jerks).

Of course the climax of the episode must surely be when the matter and antimatter versions of the same man battle each other to see who will live on. This was also the case in the Star Trek episode “The Alternative Factor” (available here) of similar vintage, where the nature of the epic struggle between a man and his antimatter nemesis caused Kirk to wonder, “How would it be?...Trapped forever with a raging madman at your throat...until time itself came to a stop...for eternity...how would it be?”

OK, back to “reality.” It seems to me that the reality of the PET scan, which includes the creation and collection of antimatter positrons by smashing particles in a cyclotron (either somewhere underground in the UW Medical Center, or perhaps at a new facility in Kent, which has come a long way since the tractor pull reputation of yore), the attachment of the antimatter to familiar substances to trick the cancer cells into building up concentrations of positrons, the continuous annihilation of the positron and electron alter-ego pairs, the detection of the highly energetic gamma rays as they flee the annihilation events, and the creation of detailed images to aid cancer diagnosis and treatment, are far more far fetched than anything that the Lost in Space and Star Trek writers could have thought up.

Saturday, March 21, 2009

Social Climbing

Ian and I went climbing at Stone Gardens today, for the first time in over a year. We stopped last spring because I just didn't have the drive to go (and of course I now know why), but I really love it, and I missed it a lot. But, rock climbing takes a lot of strength, both physical and mental, and it has just seemed a bit out of reach during chemo. During my time off this month, though, I determined I would go. One awesome thing about Stone Gardens is that we bought a season pass last January, and they let us put it on hold as of last March, even though I called and asked them to do that last May, so we still have 9 months to go of climbing. We were debating starting up our passes this month and our friend J, who works there, told us not to do that and gave us two free day passes. I mean, he understands. I'm not sure if I will be able to start climbing regularly yet, and we really just wanted to get a baseline reading on our strength. I figured I would be good for about 15 minutes the first time around.

In the event, we lasted 20 minutes, and Ian (bless his heart) was the first to say "Well, I think I could be done." My skill level (if not my physical conditioning) seems to be pretty much the same, at least on the VBs and the V0s that I attempted. The rating system goes from V0 to V10 (with VB at the beginning, presumably for "VERY basic") for bouldering (which is climbing walls up to about 10 or 12 feet tall, without ropes, or, in the wild, just climbing boulders instead of cliffs). We usually boulder. At the peak of my rock climbing ability, a couple years ago, I successfully completed one V3, could do a few V2s, was pretty consistent on the V1s, and mostly climbed 0s and Bs as if they were ladders. My goal is to become that good again. From what I can tell by watching, you have to be a monkey to climb anything from a 4 to a 7, and a gecko to climb anything from an 8 up. Note: for those of you who are concerned, the gym, around the bouldering areas, is entirely covered with foot-thick floor matting, with maybe twenty portable mats to add to a specific area in case of falls.

My heart rate went up pretty quickly, of course, and so I paused between climbs and took deep breaths, but my pausing wasn't noticeably longer than it used to be. My 10 or so successful climbs included a V0 with an overhang, which gave me the old familiar thrill of accomplishment. My hands got sore and a bit abraded, but not noticeably faster than my arms and back got tired. In other words, I seemed to have no particular issues slowing me down today, but rather a full-body capability-potential.

Friday, March 20, 2009

In With the Riff-Raff

My infusion today was short, only Herceptin, only 1 ½ hours, so I was put in a chair and left there for the whole time. I was expecting this, so I didn't feel put-upon or otherwise cheated, like I do when they put me in a chair for a 4-plus hour infusion (so far, this has only happened twice, and I've been moved to a bed within the first 30 minutes). I was even there long enough for lunch, although, strangely, it was only a half-sandwich today. Where was the other half? Have people not been eating their full lunches, and they want to not be wasteful? Could we not, therefore, choose? Anyway, the bad thing about the chairs is that, like the beds, they each have a TV. Unlike the beds, however, the walls between the chairs are not made of wall, but are instead made of curtain. There are actually 5 beds in the chair area, which I very much dis-prefer to the ones in the bed area, but they at least each have one wall, and only share one curtain with another infusion slot.

Anyway, the curtain does absolutely nothing to mask sound. What this means is that I frequently believe my infusion pump is beeping when it's actually the one next door, and I have even called a nurse to turn it off in the past, only to discover the sound had nothing to do with me. Worse, though, is the blathering of daytime TV. The sound emits from the nurse call device, which can be placed very close to your ear. Headphones would be nice, but people would have to bring their own because of sterility, and who could remember that all the time? Probably not me, and I'm doing pretty well with the memory for the most part. Today my chair was between two other chairs. Both chairs were filled; both people were watching TV. I could hear every word said, and it really drove me bats until finally a small crisis developed with the person to my left (low white and red cell counts; hold chemo; get a blood transfusion; go home; come back tomorrow), and I had something interesting to eavesdrop on until I was done.

Thursday, March 19, 2009

Noted About the Dog Cycle

Yesterday my riding lesson began at 11:00am instead of noon. The dogs came with me, as usual, and as usual, we spent a while at Magnuson park before returning home--soon after 2:00pm, instead of soon after 3:00pm. Somewhere around 3:15pm--two hours early instead of just one--Spackle came to find me with his "How about now?" enthusiastic tail and dinner grin, which notified Hoover that now was the time to start the dinner squeak. Spackle was right on time for our old schedule.

Now that my regular riding time is 11:00am, I fear I am going to have to put up with an extra hour of grinning and squeaking for a long time.

Also noted--they seem to have adapted to Daylight Savings time with no trouble at all. Dinner a practical hour earlier these days? Awesome.

Saturday, March 14, 2009


Today is day 9, not day 2, and yet something happened last night that I associated completely with my chemo treatments, which have been coming on Fridays for three months now: I couldn't sleep.

Granted, I finally dragged myself out of bed at 11:20 yesterday morning Austin time, but still, I wasn't really tired enough to go to bed last night even around 2:00am when I went, so I read for awhile, and then I turned off my light for awhile and lay there in the bed and thought about things, wide awake, and then I turned on my headlamp and finished my book, which I did at 5:40am, and then I finally drifted off, only to awake again about 4 ½ hours later. And I was really awake, so I showered and dressed, drew on my eyebrows, and made some decaf. Because clearly, I'm not having any trouble staying up.

Here is what I thought: Has my body accustomed itself to this seven-day schedule so much that it followed it even in the absence of my drugs? Can we recognize, at a cellular level, a pattern of that length? I frequently wonder, with the dogs, how much they know to expect during a routine that spans several days instead of just one day. For example, did they know, after several months, that Mondays meant they would sit in the back of the car to Woodinville, then get to go to the park? Could they, in some way, anticipate the activities of the day, know what the day would comprise? Now that riding is Wednesdays, are they confused? I know they are creatures of habit—at least their stomachs are—but does that extend longer than 12 hours?

Also, when was "the week" as a unit of time created? I'm assuming sometime with the rise of Judaism . . . (Of course, Wikipedia is full of interesting information on that last question, including various non-seven-day weeks in history, and here it seems that I was right about the Jews . . .)

I will also point out that it's now noon, and I'm the only one out of bed (although C did make herself some coffee about 1 ½ hours ago). I don't really know what that means. Better go have some more decaf.

Friday, March 13, 2009

On Vacation . . .

From my very busy life. Check out my antics at the Dilettante Traveler . . .

Wednesday, March 11, 2009

Horseback Riding Accident

As you can see, if you look really carefully, the upper right side of my right thumbnail (pictured here) is a little bit purple. This was the only injury sustained when I fell off my horse during my lesson today (we were cantering; something in the melting snow outside the arena spooked her). No smashed bones, no concussion, not even a muscle tweak (as far as I can tell right now, although after tomorrow morning's flight to Texas, who knows). My pants were dirty, though, even on the inside.

And my thumb does hurt.

Note: Ian, in his comment (see below), makes an excellent point about the inside of my pants. They were dirty with DIRT, arena DIRT. That is all.

Tuesday, March 10, 2009

OK, Fine Universe. I Hear You Loud and Clear.

I went skiing today, possibly the only time I will get to go all year. I went once last year, March 5th, as it turned out when I pulled out my ski jacket this morning and looked at the ticket hanging on the pocket. Note—I felt very short of breath during that day, which I attributed to being out of shape. Sure, that was true, but my lungs were also filling with cancer.

I didn't sleep well last night, considering that I was due to have a pretty big day today. I shut off the light at midnight, and woke at 4:00am to piddle. After my piddle, I noticed that my throat was a bit scratchy, and that kept me awake until 6:00am. I hadn't had much water to drink throughout the day yesterday (until pretty much right before getting into bed) and I'd had a cold last week, and I thought perhaps the throat was my body telling me to drink more—it wasn't quite done flushing everything out.

As the minutes ticked by toward 7:00, my intended wake-up time, and the cough drops and extra water I was drinking did nothing to alleviate my scratchy throat, I began to think maybe I should call Mom and cancel. But I really didn't want to do that. I love skiing—the speed, the cold air, the riding over the treetops on the lifts, the inevitable chili in the lodge. I even like the long tired drive home (and I am usually the driver—and everyone else is asleep). Ian had already decided not to go with me. And I needed to get the dogs out to Mom's anyway, because they are staying there while we are in Austin (we leave on Thursday). And Mom had decided to be brave and go skiing herself, which she hasn't done in at least ten years (she was going to rent gear, which I completely supported). And so, I determined I would go.

I slept from 6ish until about 7:20, then got up, fed the dogs, made some coffee and a peanut butter, honey and banana sandwich, and collected all my gear. I got my boots and poles and skis (I'd put the rack on the car yesterday afternoon), my helmet, my ski pants, some extra thick socks for Mom (worried about the plate in her ankle from a fall several years ago poking into her tight ski boot), contact lenses, two choices of hat for under my helmet, mittens, goggles and sunglasses. I dressed, even remembering bandaids to cut down the rubbing on my inside ankle bones. I collected the dogs and their leashes, some books for Mom, and I got in the car and drove out to Maple Valley.

My throat continued to bother me throughout the drive, and I continued to ignore it, even knowing that I don't get to take any more immune-boosting Neupogen for the next two weeks. Even knowing that I'm getting on an airplane at 7:30 Thursday morning. Even knowing that I'm getting on another airplane Monday evening.

At Mom's, I let the dogs out, then let Loper out of the house, then went back to the car to get the thick socks for Mom. My duffel bag was not there. It was not in the front seat, nor was it in the back seat. Even though the dogs had been in the way back, I looked there. It was not there.

I had packed into the car my boots, poles, and skis, Mom's books, and the dogs' leashes, the turtleneck that I knitted last year specifically as a ski sweater, and my jacket, which I was wearing. Everything else was in the duffel bag sitting on the floor of our basement in Seattle, right by the door into the garage. There would be no trip to Crystal Mountain today.

I wasn't even that upset—a little upset, but not really. I mean, my throat is bothering me, still. It was SO OBVIOUS that I was not supposed to go skiing today.

But you know what? I WENT ANYWAY. Mom had about 3 inches of snow, and I took my skis off the car and strapped on my boots and grabbed my poles and I skied four runs in her back yard. Each run, granted, was between 50 and 100 meters.

And then I put on my dog park boots which, thankfully, I hadn't cleared out of the car to make room for anything, and we and the three dogs went on a lovely tramp through the snowy woods. And then we had lunch, and now I am back home, nursing my sore throat with some tea (well, I soon will be), and not taxing my already-strained system any more.

But next year, we will go on a ski trip again.

Thursday, March 5, 2009

Yep, More of Why I'm Glad to be an American

My brother just forwarded me this essay, which briefly presents some information about health care in the UK, and health care in Sweden. It reminded me that, when I was at Lewis and Clark, the father of one of my classmates came from Norway to Fred Hutch (1991) to have heart surgery. He had to come to Seattle, where he paid for the surgery himself, because at age 51 he was considered too old for such procedures by the Norwegian government. At 51.

I think the US medical system and insurance system and whatnot are somewhat bloated with misspent cash, and it would be nice to be more efficient so at least kids, to age 18, can have easy access to preventative care. I feel lucky every day that our system is working so well for me, though, and I hope we can figure out some way to make it happen more for everyone.

Monday, March 2, 2009

As If It's Not Already Uncomfortable Enough

I forgot to say that, while I was lying in my MRI tube today (not too far in, because it was only scanning my brain), wearing earplugs and headphones, my head more or less in a cage, I farted several times. No one else was in the room with me, of course, so it wasn't actually embarrassing, but it wasn't nice.


I'm currently suffering from my first cold since I started doing the Neupogen several months ago and, well, it sucks. My nose is getting increasingly stuffy, and my throat is at that obnoxious scratchy stage that keeps me up at night. Fortunately, I have some Tylenol 3. It will be my friend this evening when I go to bed. Dr Jason looked in my mouth to make sure that it was a cold and wasn't another yeast infection, and I informed him that I'd gone through thrush twice already and this was not it. "We'd really rather not have you self-diagnose," said Dr Jason, "but in this case I think you've done a pretty good job." But colds are not particularly blog-worthy, so on to the interesting information: my brain.

I had another MRI this morning, and I tried to tell if the sounds I was hearing were recognizable from previous scans or not. I mean, will I eventually remember the sequence of sounds well enough to know where I am in the line-up? I don't think I will, because I don't think they're the same all the time. I really need to ask how the MRI works next time I have one. What I do know, from experience, is this: in the 35 or so minutes that I am being scanned, there are multiple mini-scans with durations anywhere from 45 seconds to about 4 minutes. I do about 2/3 of the full scan without contrast, then they add contrast for the last 11 or so minutes. There is one particular mini-scan which *is* pretty recognizable from time to time—it has this low down click click click click click etc part and then this high-powered MAAA MAAA MAAA MAAA MAAA etc part. I remember from the past hearing the clicks 16 times and the MAAAs 8 times, but today the clicks were 25 times and the MAAAs were 10 times. Also, the scan that has rattled my ribcage in the past wasn't around today. I don't really know what to make of it all.

Anyway, the initial reading of the picture, by Dr Jason, not the official radiologist, showed that the larger tumors have continued to shrink or stay the same (nothing is growing), and that some of the littler spots have disappeared altogether. It has finally come home to me that my internal body is not going to look the same, even when the cancer is all dead and gone, in any area that has been affected. I will have sclerotic patches in my bones, which probably weaken them. I will have nodules in my lungs, which fortunately don't seem to have any effect on my breathing anymore. And I asked—will I therefore, also, always have stuff in my brain? And the answer is, of course, yes. And one of the difficulties in the brain is that active cancer and scar tissue pretty much look the same on an individual scan. The main difference is that scar tissue shrinks or stays the same, and cancer grows, so you have to keep doing scans to see what, if anything, is happening.

I asked whether the PET scan at the end of the month might be useful, and the answer is, really not so much. The PET measures the uptake of glucose, which the brain sucks in at a faster rate than the rest of the body anyway. So PET imaging to the brain is usually not done.

Nevertheless, the PET and the bone scan and Dr Jason's MRIs will all help to create a picture of what might next be an appropriate step for me. I'm feeling a bit like one of those Magic Eye pictures, where, if you can cross your eyes in just the right way, you can get the answer and see an image in 3-D. One possibility is that I'll continue along as I am, watching the quarterly MRIs and the monthly blood tests and the occasional CTs, until the non-brain involved cancer is gone or something else happens to make chemo untenable. Another possibility is that Dr Specht and Dr Jason will decide that my best bet would be to stop chemo (otherwise known as systemic treatment) for a while, and do gamma knife stuff on what's left in my brain (which of course leads again to swelling, and it is, again, more activity in my brain, which is risky). Or maybe that will happen after my lungs and bones are "clear." Or maybe my brain scans will start to change and we'll have to make a snap decision.

So we don't really KNOW anything conclusive (but then, in life, when do we really?), but both Dr Jason and Dr Specht have been at least open to me asking about "After". I was also warned that I might still lose some cognitive function—that is, I am still in a position to lose some short-term memory, or some multitasking abilities. Aside from forgetting where my keys are (or, in today's case, knowing they were in the pocket of a particular jacket, but not being able to locate said jacket), I haven't noticed anything.