All Coming Together

This week I have a bit of a sore throat, which is a refreshingly mundane and minorly annoying ailment, all things considered. It's been a fairly typical December in other ways as well—tree collecting and decorating, visiting with friends, slightly too many egg nogs and Frangos, not quite enough walks with the sausaging dogs. I like the short days and long nights, and the cold—real cold—a couple weeks ago was a charming diversion from the norm. And, as 2009 draws to a close, I find my health—physical, but also mental and emotional—resolving into a sustainable place.

First of all, my right eye. I saw my eye doctor on Monday, and she says that the fluid under my cornea is no longer visible with just her naked eye and a magnifying glass—it actually has to be seen under some scanning machine for her to know it's still there. I can still see some distortion, but the vision in that eye is now 20/25, which is pretty good. My left eye is still normal and healthy and sees 20/20.

Second of all, the rest of my physical health. I won't get more scans until the new year, but at the moment everything seems good, and I continue to be bad ass as far as strength and fitness. Last week, I jumped my highest jumps yet—about 2'3", which is definitely a real jump! Even the ridiculously tall Gjinger (not a typo) couldn't just canter over.

Third of all, my mental and emotional health. I haven't been writing about this too much here, because it would've been tedious (for me). For the last several months I've been having anxiety attacks where I think something awful is going to happen (seizures, my death), with no provocation and no trigger that I can see. Flying and travel didn't make me anxious, for example, but having brunch with a group of close friends pushed me over the edge (or rather, I went over the edge during brunch). Since the attacks have been pretty common, and I've had several migraines also associated with stress and anxiety, and it's all been kind of the same thing day after day after day, I haven't really wanted to write.

Anyway, in an attempt to retrain my body how to be calm and reasonable, without the assistance of yet another pharmaceutical, I've been seeing Witch Doctor Dan every week (instead of every 3-4 weeks), and a new cranio-sacral person about every 10 days. I am also seeing a talk therapist every couple weeks, and having an ah HA moment or two with her every time.

And you know what? It's working. I have not had any sort of migraine (or neurological episode, as Taya wants me to call them, to reduce some of the stigma) for the last 8 days, and no anxiety attacks (after almost daily migraines—NEs—and several anxiety attacks the week before). I have some Ativan in my possession, just in case, and I've taken a few pills over the last couple months, but none for the last 8 days, either. I'm going to keep up the visits—all of them—for the next month (like finishing the course of antibiotics even after the symptoms are gone) until Ian and I head off to Africa.

All in all, though, a fine ending to 2009.

On Vacation

Which means, check me out over at the DT for the next week or so!

4 of 4

Brain MRI results from today are also stable. This is good news—nothing new has appeared, nothing is growing. However, Dr Jason still thinks there might be some possibility that the migraine with aura that includes speech problems is, in fact, seizure activity. There is a lesion in the area of the brain that deals with language (it's been there the whole time, of course), and there's some possibility that the injury to the brain around the lesion is causing the episodes. However, I do still think it's just as likely that the episodes are simply migraines. Although the fact that I had some while on the Keppra doesn't make Dr Jason think they aren't seizures, only that maybe I wasn't on high enough doses of the Keppra.

They way we're going to deal with it is that we filled a prescription of higher dose Keppra which we will take with us. It's enough to cover me for the trip. I won't take it unless I have an obvious seizure—blacking out, falling to the ground, something like that (nothing apocalyptic, although perhaps alarming for the people around me). I will have to see a doctor, but won't have to worry about trying to get a prescription in South America.

Because I really, really want to give my body a chance to recuperate her losses. I am physically—well, structurally and mechanically—healthy right now, and so it's the perfect time to focus on my emotional and spiritual health, which have definite, but rather less definable, physical manifestations than tumors do. Dr Jason understands that, and supports me in making that choice. And you know what, a seizure is not the worst thing in the world. If it is in my future to have one, I will have one, and then we'll know. We'll treat it, and I'll get rides to my horses for six months. And if it's not in my future, I don't want to be medicating against it any more. It's a tough, TOUGH call, believe me. I left my afternoon's appointment feeling WAY MORE anxious than when I went in, so I dipped into my travel Ativan and I'm much better now.

Life is a crazy, crazy rollercoaster. The nurse who accessed my port today has been to Chile twice (the first random stranger I've met who has been), both times for adventure boating—once whitewater rafting, the other whitewater kayaking. He asked if I was into the adrenaline rush. "Um, I don't really need it all that much these days," I said. "I'll be looking for horses."

Three Down, One to Go

I met with Dr Specht today and got the results of my first three of this week's tests—my MUGA, my PET, and my CT. In the MUGA, my heart function was considered to be the bottom end of normal, but there's not really any concern about that. Read more about the MUGA here. It's a number that fluctuates, and mine has been up and down, and I certainly seem to have plenty of energy and whatnot, good blood oxygen, etc etc. No one was concerned. My PET was completely normal, and my CT was not only normal as far as cancer stuff (or at least showed nothing new), my lungs had even cleared up more (Dr Specht thinks from the pneumonia scarring of last summer).

For the first time ever in an appointment, however, I broke down and sobbed and said that I had been feeling a lot of anxiety recently. Understandably, this alarmed Dr Specht, and she was suddenly worried that my tests had missed something important (or, perhaps, that tomorrow's test will show something important).

What the tests had missed, of course, is that emotional health cannot be measured using any sort of radiation.

Anyway, I explained that I had been feeling what I've now come to realize was mild anxiety, off and on since ending Taxol in March. It has recently become acute, particularly this week when I've been having major tests, am still recovering (structurally—my back has been growling at me on the left side where there's an old injury) from my surgery, and am planning a trip overseas that starts on Saturday and involves a transit time of about 17 hours.

I told her that I'd taken some time in September to really open up my emotional floodgates; that I'd found out and cleared some stuff that I'd been holding onto for 18 years, that I'd been grieving some major losses (my dad, my expectations of a normal life), in some ways for the very first time. I told her I was seeing a therapist, that I was not interested in medication (with the exception of some Ativan to take to Chile), and that I did not think I was crazy. I told her that she was not the first person to be alarmed, that I have been pretty calm and collected through most of everything for the last ten years and so this is definitely a departure, but that I really felt like I'd spent a long time focusing all my energy on physical and mental health, and now that I've achieved them, it was time to work on rounding out my whole Self with a dive into the Emotional Soup.

She told me that being a miracle did not, in any way, mean that I wasn't allowed to grieve and be angry, and she said that I had, again, convinced her that I was in good shape. She would like me to be on Keppra still, and was alarmed by the couple of migraines I've had with the language issue and the tingling fingers. I pointed out that those had occurred while I was taking Keppra, and I know that she is just concerned for me. She agreed that Dr Jason and I would work out that one based on what we see tomorrow.

I am not feeling anxious tonight.

Philosophizing (Well, A Little Bit Ranting)

I've spent the last two days buffeting my body with radiation and filling it with indigestible goops in the interests of monitoring my health. I was thinking this afternoon about why I always come home in a bad mood from such occasions, and I think I hit upon something.

The whole Western Medical Establishment treats humans in a very mechanical way. I don't want to sound too stereotypical here, but it's a very male way to problem solve. Stick people with needles, slice them up, implant things in them, poison them, irradiate them. It may hurt, it may be uncomfortable, even embarrassing, but it's the quickest way to get the job done. But let's be honest—it's not very nurturing.

Many, many of the individual people in Western medicine are nurturing and kind, it's true. The infusion nurses are, without exception, warm and funny. Many of the doctors, particularly these days, are warming up to the human interaction they necessarily take part in, and allowing it to happen on more level social ground. The techs are generally nice, but they also hold jobs where it's important to be very precise, and they don't inherently have the same friendliness as the nurses.

Regardless how nice, personable, warm, or congenial everyone is, though, the actual things we patients are going through, the tests and the treatments and the monitoring, those things are one indignity after another to suffer through.

I hate spending my days doing tests at the clinic. No matter whether or not I arrive on time (and I'm usually close, but occasionally up to 10 minutes early or late), I invariably have to wait at least 30 minutes, and often more, for whatever procedure I am having that day. For many of the tests, I can't eat for 12 hours before, can't have coffee, and have to fill my gullet with barium or something equally difficult to swallow. For the PET, I'm also not allowed to exercise or do physical therapy for 24 hours before, and I have to eat a high-protein dinner the night before, and avoid sugars and carbs. Even though I have a port implanted in my body (which, convenient as it usually is, is undeniably an invasion), for some of the tests, they can't use the port and so I still have to have a needle jabbed into my arm. It can only be my left arm because of getting lymph nodes out under my right arm ten years ago, and the veins are tired in my left arm. They roll and mince away while the phlebotomist pokes around under the skin with her needle (for at least 3 minutes today), or jabs and jabs again. I don't usually have to wear hospital garb, but I have to take my seven earrings out, and every single CT of the last year I've been hassled about my bellybutton ring. It's been in for 14 years; it's a pain in the ass to take out (you need a pliers to pop out the ball), and impossible to put back without going to a piercing place. I will bother to take it out for surgeries, but it stays in for scans. It's been in every single scan I've ever had for 10 ½ years and nobody's complained until now; pretend it's shrapnel.

I was wondering this afternoon if medical care had to evolve this way, if the progression from Medicine Man or Medicine Woman to Visiting Doctor to depersonalized clinic of specialists was the only way for this river to flow. It seems so incongruous to me that I'm being subjected to all this stress and hassle, poison and violation, in the interests of being healthy. Maybe there's an alternate dimension, a branched off river not so far from ours, where healthcare is nurturing and spiritual and intuitive, where Dan is the norm and Drs Jason and Specht are the crazy, alternative Witch Doctors.

I'm living here in this dimension, though, on this river, and so the obvious choice to stay healthy—possibly the only choice—is to buy into the accepted norm and submit to the indignity. I'd like to think that even yet this could change, however. That maybe these rivers could merge again, and together work wonders. That if enough care and attention is given to the other forms of healthcare, to the humanizing, sensitive, intuitive forms—Acupuncture, Reiki, NIS (Neurolink, or Witch Doctory), Craniosacral Therapy, Homeopathy, and more—we could figure out a way to buoy people up to health, instead of pummeling them there.

37!

I turned 37 last Monday, and celebrated with a dinner at Il Bistro at Pike Place Market. It was atmospheric and tasty and very sweet of Ian to plan. As you can see here, the hair is coming in.

I have to say, it's a pleasure to add a birthday to this blog.

A Mother’s Loving Support

My mother is not a complete Luddite, but unlike me, she does not have her computer on during all her waking hours, and so Sunday afternoon after I finished my blog post about my anxiety-induced apocalyptic vision, I called her to read it to her.

As I launched into the actual vision of utter destruction, I burst into tears. When I finished reading the entry, though, she did not immediately rush to comfort me.

"I don't mean to be cold-hearted," she said hesitantly, "but I have to tell you a something that this reminds me of from your childhood."

Okay . . .

"It was August, and you were about twelve, and you said you were going to go out and pick the blueberries. 'But Calin,' I reminded you, 'it takes hours! Won't you be bored?' and you said 'No, Mom! I have a very active fantasy life!' And I thought 'Oh, dear. This is going to turn on her someday. And you see, it really has.'"

Yep, she's right. It REALLY has.

Processing

I said in a recent blog post that I am not the type to want to put a bandaid on an issue, simply to hide it or make it go away, and yet, with the Keppra I've been taking since July, it has become increasingly clear that that's exactly what I've been doing, so last week I asked Dr Jason if I could stop taking it. He said sure, and gave me two options—step it down to one pill a day for five days, or stop cold. I decided to step it down, and so Thursday night I didn't take a pill.

Part of the problem I've been dealing with here, with the difference between migraines and possible seizure activity, is that the two issues can present in similar ways, which I have been aware of, but not really schooled in. Dr Jason suggested the step-down approach to stopping the Keppra so that I could monitor any symptoms I might have, and see if the lower dose allowed in more "seizure activity." The thing is, though, I have no idea what "seizure activity" is. I've been imagining it as a complete and utter loss of control, much, I suddenly realize, like my dad's rapid death from anaphylactic shock. I imagine it being sudden, gargantuan, biblically Terrible. I imagine people around me fleeing in horror as I slip or crash to the ground, my eyes rolling back in my head, my bowels releasing, foam and spittle leaking out of my mouth, my limbs juddering uncontrollably. More dreadfully, I think of this happening while I'm on the freeway, while I'm in the throes of some demonic grasp, careening the 4-Runner across multiple lanes of traffic, leaving death, destruction, and hideous maiming in my wake.

I am a logical person, though, and although I fear this outcome, I also don't believe it's likely. Also, I have shared with my doctors, pretty immediately, everything I've experienced that has struck me as particularly odd (minus the image of rush hour carnage on I-5 at my hand). However, my utter terror of the event has definitely been a factor in how little I've actually learned about it on my own.

An aside here: I have found that, without fail, getting more information about something that horrifies me to the point of lightheadedness comforts me immediately, and immeasurably.

Last week I started down the path to understanding more about my head when I read about "migraine with aura" symptoms on the Mayo Clinic website. This seems very much like what I experience.

This morning, I finally got up enough courage to read about seizures, epileptic and non, onset and during and after. None of these seems very familiar to me. While one or two of the symptoms are marginally like those I experience with my migraines, with seizures they are much more extreme. Most symptoms are completely unexperienced by me.

I then read the list of possible side-effects of Keppra, and many, many of the things I've felt in the last few months, that aren't related to the migraines, are pretty much there in black and white as side-effects of this drug.

And then, just now, just to round out my day's education, I read a list of anxiety symptoms and, folks, I THINK WE HAVE A WINNER. I would say that not all of the symptoms on that list are things I feel often (my guts/bowels are actually pretty healthy these days), but I would say that, since ending my chemotherapy this summer, I'm pretty regularly experiencing about 80% of these things (note: migraine is a symptom of anxiety). At my first therapy session several weeks ago I did fill out a form about Post Traumatic Stress Disorder and we determined that I don't have that, but it does seem clear (clearer all the time) that I am, very much, working through a bout of intensive, focused anxiety.

Well what do you know.

Thank you all for providing a forum for working through my current issues. Although (finally) recognizing acute anxiety doesn't make me want to medicate it any more than necessary, I think I will make sure I have some Ativan on hand when we go to Chile next Saturday.

Profundity Out of the Mouths of Babes

I'm in the process of editing my mom's latest memoir. In the section on my brother and me, she's included several things we said that she jotted down to remember for later. Here is one, when I was maybe 5 or 6:

After being in an auto accident: "I cried for a little while until I knew I was alive."

Not Much Has Changed

Evidently, I have held my great regard for horses and dogs for a long time. I must have been about twelve in this picture. Snappy was about 4 years old at this point, and it looks like Pepper was only a couple months.

Not Judging

I've been spending a lot of time recently, actively working on not judging, on, instead, coming into situations with an open mind and heart, and really seeing and feeling what is going on in me, and around me—whether or not it is easy, comfortable, funny, or, as sometimes is the case, excruciatingly painful. I am not a bandaid-on-my-problem sort of person. I do not want an anti-anxiety pill if accepting, loving, and welcoming anxiety will allow me to really look at it, and really see where it's coming from. At this moment, I'm feeling pretty content and comfortable, sitting here in my warm living room with my two dogs sound asleep on the floor, all the rain and chill outside. Claiming to want to welcome anxiety makes me feel a little masochistic right now, because I have had some recent poignant and distressing experiences with letting strong, difficult emotions into the forefront. But I've survived them, and grown from them. And the thing is, we humans have a rich palette of emotions that we are able to experience, that we can use to color and tint our day-to-day lives. It's an amazing gift that we have, this ability to feel, and I wish to take full advantage of it. I wish to be aware of my life—all of my life.

All of this preamble is to say that my tumor markers were down again last week, from 29 to 24. Now, 24 is significantly lower than 37, and even Ian the statistician, not just Ian my husband, would agree.

Which is to say that, after my breast-cancer containing ovaries were removed, my markers dropped. Does this mean that my ovaries contained the last live breast cancer in my body? Or were they simply another part of my body containing cancer, and there are more still in there, but losing the ovaries is what dropped the blood count? I am happy that my tumor markers went down again, but the truth is that I have no idea why—therefore, I am accepting this information, but trying my best not to pin hopes to it. It is information that makes me happy, but it is only one small piece of information.

One of my colleagues—my colleague in that she, too, is spending much of her life at the moment in breast cancer treatment and "colleague" was the first word I thought of to describe our relationship—did several months of surgery and systemic (chemotherapy) treatment and radiation, was pronounced clear, her tumor markers were low like mine, and then she started having headaches and they found 10 or 12 lesions in her brain, metastasized breast cancer that hadn't put in an appearance in any other way.

And so. Information: my tumor markers are down. I had a fantastic first ride yesterday after my surgery, and jumped, and I feel gloriously stiff today. Hoover still barks at dogs on the street. Spackle is holding his own. Ian is dorking out with colleagues (the work kind) this week.

Life is as it should be.

Blocked Up

It's not what you think.

The last two times I've been in for a blood draw recently, blood leaving my body from my port has been S L O W. I've had to go through various contortions (well, subtle contortions), like leaning back in the phlebotomy chair, raising my left arm and squeezing my hand into a fist and taking deep breaths, while the nurse strains and cajoles, trying to suck out blood. Nothing that true contortionists would find remotely taxing, but the port is meant to help avoid difficulty in a blood draw, among other things. What probably happened was that a bit of a clot formed over the end of the hose where it sits in the center of the aorta just over my heart, and as things have been pushed and pulled through that tube, the clot has expanded up inside. I have several tests scheduled for the week after next, and I definitely want to use my port as much as possible for them, and so I went in this morning for a TPA. TPA is some sort of enzyme that breaks up blood clots, quite effectively, although not always very quickly. Sometimes 30 minutes is enough; sometimes they send you home overnight.

Concerned that it might be an amount of time inconveniently between 30 minutes and 24 hours, I brought plenty of stuff with me to the clinic to keep me occupied, including dogs. Unlike my normal infusion days, I didn't have to be hooked up to anything for this treatment—they just accessed my port, pushed something in with a syringe and then let me go. So I went downstairs and got my flu vaccine (the normal one, although it hurt more than I remember last year's hurting. Evidently, I'm not the only one who thinks that this year's is ouchier. The woman who administered it is getting hers this afternoon, and was definitely not looking forward to it after all the input she's received from her patients), then took my dogs for a walk right as the rain started. Hoover doesn't really like pounding and reverberating up long, echoing staircases in parking garages, but I found the experience pleasantly incongruous, and later in an elevator back in the clinic, someone complimented me on my dogs.

We returned and I made it back upstairs, ready to settle into my infusion chair for a long wait (pulling out my coffee and scone from EBC, my crossword, a couple books, and taking off my sweater), but my nurse came by to check the progress of my port and it had cleared out, so she let me go.

Pretty minor in the scheme of my usual unblockings.

Two Accomplishments

Today I met with my new GP, Dr Alison Kneisel at One Sky Wellness Center. I have needed to establish a relationship with a primary care physician for, oh, ever since I left grad school and no longer had access to the student clinic. So, almost a decade. The main reason I haven't done this is that, during that past decade, I've been pretty well taken care of by oncologists, with rarely much of a breather between bouts of cancer treatment. And frankly, a little bit of a cold doesn't even register on my illness-to-wellness scale.

I've had these scaly patches on my lower legs for long enough now to bother me though (I'd say about 3 months), and not only are they itchily, drive-you-insane annoying, they are also unsightly. The unsightliness hasn't mattered much here in Seattle where fall is in full (and today, gloriously sunny and crimson and gold) sway, but Ian and I are heading to Chile for 8 days at the end of November and it's late spring there—i.e. short skirt weather—and I'm vain. And so, circumstances finally built up enough pressure for me to search out a doctor. Dr Specht is great and all, but her focus is on saving my life, not my narcissism.

Another reason I haven't searched out a GP is that, in my lull times, I've been superstitiously sure that anything an allopath can tell me about myself is going to be cancer. And, that's been true for the last ten years, so my fears in that vein have been pretty well realized. Anyway, as I said, itchiness, vanity, and the knowledge that Dr Specht has crises to deal with and someone else can cover my minor annoyances, finally came to a head and today I saw a new GP. Accomplishment One.

Accomplishment Two: The scaly patches on my legs ARE NOT CANCER. They are eczema, or a slight yeast infection, and they will most likely go away with the assiduous application of a prescription steroid cream. They may be related to the cancer indirectly—in that my body may have been more susceptible because of all the torture and drama it's dealt with over the last 17 months or so—but that is all. They are a normal, run-of-the-mill, itchy inconvenience.

Release breath.

Another Good Reason to Get Them Out

Dr Swisher, my surgeon, called today with the pathology report on my ovaries, and to see how I am recovering from the event. My recovery, complete with 3-mile dog walk yesterday, and walking to lunch with a friend today, seems to be on schedule, if not ahead.

My pathology, however, was not what we were expecting. There was breast cancer found in both ovaries. Dr Swisher said that they were both slightly larger than she had expected after all the time I've spent on Lupron (the ovarian suppression drug), and they were a little bit hard. This explains why my left abdomen hurts more than the right—they were both pulled out the left side, and they stretched the hole a little.

It is impossible to tell looking under a microscope just how active the cancer was in my ovaries, but it was definitely not scar tissue or dead cancer cells. It's not surprising for breast cancer to metastasize to the ovaries, and the Herceptin may have been enough to be keeping it in check, like a dormant volcano, so that it wasn't showing up on the PET scans or CTs. Dr Swisher took a good look around at everything else in my abdomen while she was filming in there, and from the outside of the organs at least, everything else looks normal.

I don't know if Dr Specht will recommend any changes in my care. My next visit with her is scheduled for mid-November, after a new MUGA and an updated PET/CT. And as Dr Swisher said, this surgery was an easy way to take more cancer out of my system.

I guess that, if anything, it's all the more evidence that for me 1) cancer is systemic and 2) I will need to be on the alert about it.

Bound to Happen

Last night, I accidently dosed myself with a drop of Spackle's eyedrops. It is a medication that I own myself, so it could've been worse, but for months now I haven't been supposed to use the drops, so it could've been better. I blame the cleaners for (however reasonably) tidying up the sink in the bathroom by placing the vial of drops on the glass shelf at the end of the tub, with the several other vials of drops. I of course don't blame myself for not paying attention.

Follow-up Call

I've been feeling pretty good today—so good, in fact, that Mom and I went shopping. We started at Wallingford Center, where everyone thought we were from out of town (I live 6 blocks away, but evidently looked like I was touring). We then went over toward U Village and bought some buttons for a sweater I'm knitting for my niece's first birthday (I don't think she's reading this yet so I'm probably not ruining the surprise), then stopped for lunch at the Ram (soup and a salad for me), then, since we were there, hit Something Silver and Anthropologie—where I didn't buy anything, but Mom did.

We arrived back home to the message light blinking. Someone had called from the U hospital to check up on me. "Hello Mr Taylor," she said. "I'm calling from the UW to see how you're doing today. There's no need to call us back. We'll try again later."

I thought Wait a minute. Did I hear that right??? I hit 4 to repeat the message.

"Hello, Mr Taylor . . ." said the voice.

Maybe the procedure I had yesterday was a vasectomy.

Not What I Was Expecting to Have Keeping Me Awake

My whole surgery experience today has been, in fact, pretty minor. The surgeon told my mom that my bowels were well cleared out—yes. That I knew. I just used the toilet about 30 minutes ago, about 30 hours after beginning my 1 Day Bowel Cleanse yesterday afternoon, and it was the first time that I only piddled. I have to say, I was surprised to find out how many people have had similar 1- or 2-day bowel cleanses. It turns out lots and lots of my friends have had to do them, for various surgeries or procedures, and I'd never heard a word about it. Evidently, I am much more comfortable with my own scatology than most people. This is a behavior that I may want to curb.

I am currently feeling pleasantly fatigued in the post-operative-drugged sense. My gut is still blurp-blurping a little, but that's to be expected after any surgery with its prophylactic antibiotic and preparatory fast. My throat is slightly abraded from the air tube, but nothing like last year after 8 days of it. I am, for the most part, feeling no pain whatsoever, and I haven't taken any pain medications since leaving the hospital around 1pm, when I was given a fluorescent red tipple to help me with the journey of 3 miles. Which, of course, I accomplished in the passenger seat of my mom's car. Issuing her directives all the way. When I stand up from lounging on the sofa I am not quick to throw my arms above my head and stretch, or even straighten my back all the way, but I'm pretty comfortable where the incisions are.

I didn't sleep much last night, which is not terribly surprising. I had to be up at 6:15 for a 7:15 arriving at the hospital (which turned out to be at least an hour and a half before they actually needed me.). We made it to bed around 11:30 and I used the bathroom again around 12:15. At 3:00 Ian got up to let Spackle out to piddle—one of the side effects of his Prednisone is that he drinks a lot more, and subsequently pees a lot more. He is used to being able to hold it for up to 15 hours, and so perhaps he's just taken by surprise in the middle of the night when, after a mere 4 hours, he suddenly wets his bed. At any rate, for two nights in a row he had small accidents on his bed, so Ian preemptively got up last night to let him out, which naturally disturbed me a little, but really not much, and then I was awake at 6:00 when I heard Mom being stealthy in the kitchen making some coffee. She was stealthy enough for Ian; not for me.

Anyway, after I piddled for the last time and before I fell asleep, I spent about an hour in my head, mulling over my upcoming surgery, and this, my mullings, were what surprised me. I lay there thinking about going under the knife, losing my ovaries, removing yet another part of my physical womanhood and I was . . . excited.

I had seen my friend/mentor/bodyworker Taya Thursday morning, and she had pointed out that removing my ovaries was the final step in closing the door on a path that was not mine. It was a path that I'd fondly assumed would be mine—the path of bearing children with my dear husband—but, several times over the past ten years, it had been implied to me, with greater and greater blatancy, that it was not my path. Closing it off completely would allow me to open up myself up to the Universe in a way I've never been open. Closing that door would free me to receive, without interference, my true path.

I mulled this over for awhile, and then realized that I have been struggling with trying to impose an "ordinary" life, as understood and practiced by a majority of Americans my age—spouse, kids, employment, exercise, etc—when I have had several extraordinary experiences. It's true that everyone's life is different from everyone else's, but even so, I have had a combination of extreme things happen in my adult life. My father died when I was 19. I know of three other people my age who have lost a parent. When I was 25, I became able to live without having to work. I know two other people in a similar situation. When I was 26, I contracted a breast cancer that has dogged me for a decade. I know two people my age in similar physical situations. When I was 27, I met Ian, who is the most incandescent blessing in my life. Many of my friends have had difficult relationships in the same time period that we have been together.

In short, I have been trying to fit my expectations into a framework where they just won't go, and getting my ovaries out (and a special thanks to Taya for bringing this to my attention) frees me from that futile pursuit.

And so, I am excited. I am excited to see where Life will take me next.

Home from hospital

Calin is home again, having been a model patient at the hospital and now resting on the couch. She says, "It seems to have gone quite well: I'm not in too much pain, I'm having a lovely cup of chicken broth, and then I might have a snooze."
-Ian

The Burbling Begins

Tomorrow I am having my oophorectomy, or, more completely, my bilateral salpingo-oophorectomy, which it's called since I am getting my fallopian tubes removed as well as my ovaries. In more common terms, I am getting spayed. I may have described the surgery in my blog before but I'm too lazy to go back and check, and besides, I'm assuming you readers are too, so here I go again:

It is laparascopic, which means that there will only be small incisions made in my belly. Two incisions are ¼ inch, and one is ½ inch. One ¼ inch incision goes in my belly-button, and the camera goes in there. I then have another ¼ inch incision over my left (I think . . .) ovary, and a ½ inch incision over my right ovary. The larger incision is where both my ovaries will be extracted, once they and the fallopian tubes are excised from their traditional location, to either side of my uterus. My uterus will be left completely intact, although, of course, perpetually dormant. I asked why both ovaries are pulled out one side, because in my image of the abdominal cavity there are actually small bits of connective tissue holding the skin on in various places—that is, the belly skin is not simply a purse that things are tossed into—but evidently the potential injury to non-blood bearing, minor tissues is much smaller than the potential infection to a larger, ½ inch incision. So one is okay because it's necessary, but two are not necessary and so it's safer to stay with the ¼ inch size. I have to be in at 7:15 tomorrow morning, but should be back home by early afternoon. The procedure is outpatient, and takes about an hour.

Even though the actual physical surgery is pretty much as minor as a surgery can be, since it takes place in my abdomen I am required to do a one-day bowel cleanse. This involves, first of all, no food today, the day before the surgery. I can drink clear fluids—including coffee and tea, apple or cranberry juice, energy drinks, and chicken broth, but nothing solid or opaque. This sucked a little already this morning when I went to the U Village Burgermaster with my book group (we actually had read a book this time, The Guernsey Literary and Potato Peel Pie Society, which I am obsessed with and have read 3 times already). When we originally set the date, I was planning to try a milkshake for breakfast (I've already discovered that one occasionally makes a fine supper), but as it was, I was limited to a large cranberry juice and a cup of coffee.

The next, more important step, since I won't be adding any solids, is to clear what is already there, languishing through the 30 feet of digestive tract, in many fewer than the usual 20 or so hours. To accomplish this, I have to drink two bottles of magnesium citrate with a "pleasant lemony flavor." Magnesium citrate is an oral laxative and, as I'm not actually constipated at this time, you can imagine the effect it's about to have on me. Although you probably don't want to.

Excuse me a moment while I go to prepare my second bottle.

So, yes, my bowels will be clear. I am supposed to drink lots of fluids so I won't be dehydrated and my electrolytes won't be completely off. But it's increasingly hard to watch the people around me having tasty hamburgers, chips and dips, even toast. And especially milkshakes. I am going to do my best to not fall victim to hanger, though, and instead enjoy this routering out of my system. I have never felt the need for a fast, and yet I'm glad to have the opportunity to experience one (of a sort).

And now, in the spirit of the external matching the internal, I'm going to go clean months of unknown ickiness out of the fridge. If anything will make me not hungry, that will.

Radio Silence

Hello all you patient readers, who have heard nothing from me in weeks. I'm still here, and still doing well physically. Emotionally happens to be another story.

I took the opportunity of peace, quiet, nature hikes, horses and dogs—i.e. Heaven on Earth, Jerome Creek Idaho—to dig into my closet of emotional traumas, where I've been stuffing things for the last, oh, at least 20 years or so. Turns out it was a big mess in there, and now everything's out, scattered haphazardly on the floor, emitting various stenches and high-pitched, ceaseless whines. I'm wading through it, and clearing the air, and making promises to donate to the Good Will in future, rather than keep around a passel of old distresses that I've outgrown.

Adding to the poignancy of old troubles are, of course, my feelings about the impending oophorectomy (this Monday, no time yet), and my concerns (currently assuaged by the wonders of prednisone) for Spackle.

If you happen to see me and I look—or act—a mess, rest assured that the cleaning/tidying/reorganizing catharsis will eventually end, and I have no doubt I'll be the better for it.

Like Mother, Like Dog

Spackle has been suffering from Basset Hound disease for a little over a week. That's what I'll call it, because that's what it looks like: Not the ear part of the Basset Hound (that would be weird), but the eye part. His lower lids have been puffy and droopy, showing off the whites of his eyes, which have been rather red and sad-looking. I know that I am totally anthropomorphizing to say that Spackle is sad, because the truth is, he really doesn't seem to notice that anything is amiss. I have seen him paw at his eyes a total of two times in the last 9 days. He is maybe slightly squinty in the sun, but he is still eating his 1 ¾ cups of dog food, morning and night, in 30 seconds flat; he's still jumping into the back of the car whenever we invite him to join us on a trip; and he's still obsessed with racing after his tennis ball, as long as he can get someone to throw it for him. Still, dogs probably more than any other animal outside primates can stand up to being anthropomorphized—after all, haven't we humans spent thousands of years trying to get them to live with us?

Anyway, what I'm probably really doing is projecting, and I'm projecting sadness most likely because I'm a little depressed that my own eye is still acting up. I have wondered if Spackle's eye issue is not so much his, but just an energy he picked up in the house and is manifesting. Dr Mortimer, our vet, didn't say much about that theory, but I did get a reaction when I told him about the needle in the eyeball that I myself got to experience just a few months ago. That made him shudder. Anyway, he diagnosed an inflammation of the tissue between the cornea and the iris, which has a specific medical name which I can't remember, which could indicate something more serious going on systemically, but doesn't really seem to in Spackle's case. And so, we're treating the symptoms: redness and puffiness. And one of the drops we're using is the EXACT same as one of mine. Ian already carefully wrote "Spackle's Drops" on the first bottle we brought home, to add to the dozen I have; we were careful to label this one, too, even though the prednisolone has been discontinued for me for the time being.

I thought about saving the $15 for the prescription by just giving him mine, but what stopped me was not whether or not I should use the drops after they've been used in a dog's eye, but rather whether or not I may have contaminated the drops by touching the bottle to my eye accidently, and therefore might cause more injury to my dog. So now there are three entries for our family at the pharmacy up the street: for Calin, Ian, and Spackle Taylor.

Back to Good

I should say that, when I wrote my last entry, I was in the middle of feeling scared of everything about my world. While this is definitely something that happens, and I was in the throes of it the other day, it is not something that I deal with all the time. That is to say, I often feel strange aches and pains, see distortions, and have alarming thoughts: I do not always have to try hard to convince myself that I'm safe. Nevertheless, even when I'm feeling predominantly optimistic and happy, I still don't really trust myself to know what is significant—i.e. should be monitored by a medical doctor—and what is simply part of life. The episodes of anxiety seem to be decreasing, which is much appreciated by me, and I'm sure by Ian as well. I did go horseback riding yesterday—a horse whose withers (the part where the mane reaches the back) is about 5'10" high (i.e. taller than me)—and, as usual, I completely loved it.

It also always helps to get news like yesterday's: My tumor markers have gone down again, putting me securely in the "normal" range, even though the last actual chemotherapy I received was in early July. I quote from my nurse:

"Calin,
They look wonderful!
CA 27/29 was 35, now 29  normal  0-37
CEA  was 1.3     now 1.2  normal 0-5.0
 Keep doing whatever you are doing."

Enjoy the last few days of sunlight, folks. I will be.

Post-Traumatic Stress Disorder?

Ian suggested yesterday that it might be helpful for me to find someone who has actually been diagnosed with PTSD and see if some of the ways I feel occasionally could simply be symptoms of a psychological condition, brought about by living through extremely difficult times. It seems likely that I am dealing with a bit of this.

One of my doctors yesterday emailed to ask if I would be willing to talk to a patient who is about 16 months behind me in terms of disease and care (i.e. just diagnosed with breast cancer mets and about to start treatments), and of course I would be, but when I first read the letter a totally unexpected wave of vertigo passed over me and I was glad to be sitting down.

Also, I feel a bit like I can't stay still. In part, it really is simply the joy of being strong and healthy and able-bodied, but in part, I feel that, as long as I am in motion, I am safe. As long as I am producing, as long as I am exercising/cooking/creating/running errands/on the go, I am proving to myself that I'm not dying—that I am here to stay. But I need to keep going, to keep staying.

I knit a lot of caps for people, and this past year I've been sewing a lot of glitter bags—like, maybe 40 by now. And as I finish each one, I think okay, another person has something I've made. As with activity in general, I do enjoy sewing and knitting and creating. But I also recognize that, as long as I can do these things, I'm here, in this world, alive. And as long as I can give away these things that I've made, I'm here, in this world, in the hearts of people I know. Fatalistic? Definitely. Discomfiting? Undeniably. Reasonable? Definitely not. Understandable? Of course.

People who have lived through wars hear a car backfire down the block and dive for cover. I sit, hunched over a sewing machine for an hour guiding glitter vinyl with cramped hands, get a twinge in the muscle at the top of my head, and immediately have to convince myself it's not a tumor. Much of my day is spent in reassuring myself that all is as it should be, and that "as it should be" means I am well.

I have no reason, other than having lived through the last 16 months (added, I suppose, to the last ten years), to be worried about myself right now. But I am constantly in negotiations with myself, the one absolute exception being when I am on horseback. Then, I finally feel so completely, uncompromisingly alive that I no longer think about it. I just am.

Judgment

Judgment about what is good for me, physically, or probably more to the point in my case, lack thereof.

I am in a surprisingly difficult place in my recovery right now, where I feel pretty much fantastic, and therefore have no real sense of what my limitations are, and when I should take it easy. I am physically in better shape than I can remember being in for some time—probably years. I'm lean, strong, fit. When I last got my oxygen levels and heart rate measured at the UW (10 days ago with my MRI), oxygen was at 99 (as high as it can go) and heart rate was 67! Last year was something like 88 and 125. I have, as I explained to Taya the other day, passed another threshold of fitness. The first threshold was back in March where I was trotting and posting in my riding lesson and suddenly realized I was doing it. And then felt like I could continue trotting forever. My lessons stopped ending when I was too tired, and started ending when the lesson was over.

This second threshold seems to have been leapt over in mid-July when I was in Idaho and found myself exercising pretty intensively for about 4 hours per day. I came back to Seattle energized (well, after my initial day or two of recovery), and have found that my level of fitness is now self-perpetuating: meaning, not only can I post for 45 minutes if need be; I am seeking out ways to really revel in the strength and speed and flexibility and endurance of my body.

This has already led to a couple issues. One was last week, when I went rock climbing for the first time in awhile. It seemed easy to haul myself up walls, and even though I hadn't done it in awhile, my added strength really helped me. However, I seem to have stretched one leg too far on one wall, and then flexed it to propel me up, and pulled my hip so that when I stood up or sat down, turned to pick something up, or occasionally when I walked with Hoover, it felt like it was about to pop out of the socket. Taya fixed me on Saturday.

On Monday, Witch Doctor Dan fixed me first—helped me integrate with my new supplements, and reminded my brain (and, this time, specifically my thalamus) of the ways it should behave to keep my body healthy, as he does. It was a pretty intense appointment, and I came home and slept profoundly, crosswise on the bed, for a drooling, snorting hour. Yesterday, much recovered from all my reawakenings and reintegrations, I reorganized the basement storage shelves, then felt well enough to do some Dance Dance Revolution—you know, get my heart rate up, put out a bit of a sweat, and hear some fabulous Japanese pop music while I was doing it. Well . . . it seems my thalamus wasn't quite ready. I didn't actually break any of Dan's work, but I did seem to push it back a bit. Evidently, the thalamus is the part of the brain where sensation passes through on its way to becoming conscious thought (which seems like evidence for why it is associated with migraines) . . . and for a thalamus that was a bit taxed already and perhaps wanting to focus on some quiet contemplation, Dance Dance Revolution was a sensational NIGHTMARE. By the time I was done, after about 30 minutes, I had the beginnings of a migraine (yes, the migraine that kept me from shopping with my SIL and niece), which turned out to be HIDEOUS, complete with head pain and nausea, which mine usually don't have, and which s u c k e d.

I took a Tylenol PM at 10, which didn't knock me out immediately, and did allow me to wake up to piddle at 5am, but did keep me pretty well zonked until 9 this morning when I had to get up to go riding. And, as usual, the ride was wonderful and I felt much better having spent my morning on a horse.

So, all in all, this was a pretty quick recovery. And I'm trying, I really am, to listen to my body and what it needs and wants, and give it those things. It's just that its needs and wants are different now than the last time I felt fit, because it is different now, and became that way more rapidly than if I hadn't had the cancer and all these changes had just been left to aging. And so, body, hang in there. I love you very much, and I'm doing my best to keep you happy.

On the Schedule

It looks like I am going to have my oophorectomy surgery on Monday, 19 October. I will probably have to take a couple weeks off from riding to recover (takes a lot of core strength, this horsing around), but I have up to 21 days of riding between now and then. I'm hoping to want the break.

Similar Schedules

Several times recently I've attempted to make plans with some of my girlfriends who are new mothers. It's worked a couple times, but more often it hasn't. In part this is because infants, no matter how Type A you are, really try their darndest not to be schedulized. Inlaws are also occasionally difficult to schedulize, as are various other friends and relatives of the bouncy new babe. Clearly, these moms have a lot of personnel to manage. However, possibly the greater part of the trouble following through on get-togethers is my own obvious inability to schedulize my own life. It seems that people going through cancer recovery can be about as rock solid on plans as can parents of new babies, which is to say, really not at all.

I do like all these people I've been trying to meet up with, and I am, without exception, looking forward to the events we have planned (hint: most of them involve shopping). But sometimes, even still, after about two months without the worst of the worst, i.e. chemotherapy, I can't get to sleep until 3 am and so, to approach my 9-hour preferred minimum, I sleep until at least 10. And then I have to call and cancel brunch. There are also various ailments that crop up at various times, both physical and psychological. Today I was lucky in that the changes were not entirely my fault—my niece didn't go down for her nap until about the time I was planning to leave home to meet them . . . but right around the same time I had a migraine which turned, annoyingly, into a second migraine (after my own nap), and so, after all, I had to cancel what would've been merely delayed.

All of this gives me an acute sense of forgiveness and understanding for people who have to change plans or cancel them, even at the last minute. So far everyone has been treating me the same, which I do appreciate. I really wish I could make an appointment and know I can stick with it . . . but I guess, as illustrated by that metaphorical bus that could kill us all at any moment, we can't ever know. I'm just in a position to appreciate that particularly intensely.

Validated

On Friday I had one of my regular brain MRIs, and, since our friend the neurosurgeon from Portland was going to be here, we got copies of two of my scans for him to look at (just for fun, not for diagnosis): the very first one, from 20 May 2008, and the one from Friday, 21 August 2009.

Basically, my response has been remarkable. Not only did the lesions all shrink significantly (some even disappearing or almost disappearing), I do not seem to have sustained much, if any, brain damage from the radiation. I guess that usually in scans like these doctors expect to see white patches around the ventricles in the center of the brain and also, perhaps, around the lesions themselves. This whiteness, our friend doctor explained, is destroyed capillaries, and is pretty much the same thing as what happens in a stroke. Old people also tend to have these white areas of capillary damage, and pretty much all brain radiation therapy patients do as well.

I do not.

Even Dr Jason, who is careful to remind me that we'll never really be out of the woods on the brain, simply because we can't treat or measure as much as we'd like to there, was impressed with, I guess, the healthiness of my brain in general. Sure, there are still some obvious irregularities (we counted 9), but I think it's safe to say I weathered the treatment with a minimum of trouble. Dr Jason even said something like "whatever you've got going on up there, it's good stuff." Friend doctor agrees.

Giraffe

I was at the vet today with Hoover, paying the extra $20 to work him in as an "urgent" care patient at the inconvenience of people who had planned ahead, and while I was waiting for him to be called, I paged through a monthly publication about pets and other animals. Several weeks (months?) ago, I was musing about the length of time I'd be in active cancer treatment, and comparing it to a gestation. Would it be, in fact, nine months like a human? Eleven like a horse? Up to two years, like a spiny dogfish? Well, it turns out that the gestation of a giraffe can last up to 14 months—the same as my treatment! Those of you who have been to my house, or seen me in a swimsuit, will understand that I am particularly happy with this coincidence.

As for Hoover, he is already better. He seems to have been stung several times about the face late last week, and although he doesn't have bumps on his nose anymore, both his ears have stayed plush and pillowy. Nice to pet, but probably a bit weird to wear on the head. He actually hasn't been bothered, which is why, after talking to someone at the vet last week, I didn't take him in immediately. But today, when his ears were still super soft and huggable, and we're leaving at 4am tomorrow morning for Mexico, and my mom is coming in to town specially to pick up the dogs and then take care of them, I thought I'd better be a responsible parent and get him checked out. He got a steroid shot and two Benadryl ("This dose might make him a bit lazy right after he takes it," the vet said. Uh, no. Hoover has not been noticeably lower energy than usual), and he'll have six more Benadryl over the next two days. His ears are, I'm just a tiny bit sorry to say, already leaner and more real doglike, than stuffed doglike. They're still very velvety.

The Numbers Game

First of all, since last I mentioned, I know of another pregnant person, and another new baby I didn't even know was on the way, already born. I haven't yet counted up how many that's been for the last year.

What I have counted is just how much time I've spent, since beginning my treatment at the beginning of May last year, in the clinic and driving to and from various appointments. I have included time at the SCCA, time at the UW hospital, time dealing with my eye, time visiting my Witch Doctor, and time with the craniosacral person. This is an estimate—I have not kept scientific track—but I think you'll find the numbers interesting nonetheless.

I have spent a total of 1,000 hours either in treatment, in appointments, or having scans. This works out to 25 weeks in a 40-hour-per-week job, or more than half a year working full time. On top of that, I have spent at least 72 hours on the road, traveling hither and thither to all my appointments, thus bringing my full-time job week count up to 27. I have been in treatment for 67 weeks now, though, so when I average 1072 over 67 weeks, my time spent in treatment drops to a mere 16 hours per week. This, of course, does not count the time spent recovering from infusions at home, which is not really measurable. At a 16-hour work week, I have driven (or been driven) for 4 ½ of my weeks.

Yeah, okay. So this really has been a significant proportion of my time.

This month, I am not jumping immediately into my only-every-three-weeks schedule, because there are still a variety of kinks to work out before that happens. So far, this is the only week I don't have anything medical going on. It's getting there, though.

Thoughtful

I'm feeling quiet and thoughtful this afternoon.

I had an appointment this morning to talk to the gynecological oncologist and discuss getting my ovaries removed. Evidently, it's an easy procedure. They do it laparoscopically, it takes about an hour, I would be put under completely (to allow for the least tension in my guts), but it's still an outpatient surgery. I have never had abdominal surgery and my ovaries appear to be healthy, as well as small from having been suppressed for the last year, so I am a particularly routine case. Women who have had the surgery report about a week of feeling just kind of "ungh", then maybe one more week before they really feel like picking anything up (hear that, seventy-pound Spackle? You'll have to get yourself into the back of the car for a little bit), but there's no major pain, and, since I've already had them suppressed for the last 14 months or so, I should not feel any of the menopause symptoms as my body adjusts to the lack of ovaries, because, well, they're essentially gone already.

This is a good time to do the surgery (that is, after my next trip to Idaho at the end of September), particularly because I'm not on chemo, which can make healing take longer, and risks of infection higher. Since my ovaries respond well to medical suppression, which I could evidently be on indefinitely or until natural menopause takes over, there is no medically crucial reason to get them out. It seems like a good idea to keep the estrogen out of my system, though, and I could have another 20 years of it, so it's got to be one or the other.

The problem with medical suppression is partly that it's yet another drug—and this one an uncomfortable shot in the ass—but mostly it's that it's on a monthly schedule—meaning I'd have to be in the clinic every four weeks—and the Herceptin protocol I began as of yesterday is on a tri-weekly schedule, meaning that, with the combination, I would have to be at the clinic almost every week anyway. Years ago, Dr Livingston had me on a different suppression regimen, which I was able to get every three weeks. The one I'm on now, the pharmacists won't allow that. For all I know, they wouldn't allow it with Zoladex (the old one) now either.

I know this is surprising to you all, but I don't actually like hanging out at the clinic that much. I would like to stop going there so regularly. I used to complain about the 3-week bungee cord that kept me tied to Seattle. It wasn't a steel cord—I could stretch to a bit longer than 3 weeks every once in awhile. But my life was definitely in 3-week intervals. I would love to have that back for awhile. As long as Ian is on the ridiculous schedule of the American working stiff, with technically only two weeks off in a year (well, with comp time and whatnot he gets about 3), there's no need for me to have more than 3 weeks at a time.

None of this at all even approaches the true meaning of getting my ovaries out, though, which is that, once and for all, no turning back, I will lose all ability and all potential ability to reproduce.

This is proving to be surprisingly harder to deal with than I thought it would, particularly when last year it seemed I was a hair's breadth away from dying, and no one, NO ONE, would ever want me to try to get pregnant with my history. Logically, I don't even want children anymore. I don't think either Ian nor I would've survived the last year if we'd had to care for anything even a teensy amount more needy than a dog (and we had a lot of help with them), and kids are in a completely different universe of neediness. Even excluding my cancer past and the possibilities of future recurrences (which, of course, I can't after 10 years and four bouts), I'm 36 years old now, I'm set in my ways, and I like having the bulk of my time to call my own.

That said, without being a rabid "I will only find meaning in my life if I have children!" sort of person, I always assumed I would have kids. We picked out a name for a girl, and would occasionally discuss boys' names, without really reaching any sort of conclusions. In the past few years, I've thought a lot about parenting, and I still catch myself in certain situations thinking "Oh, I'll have to teach my kids about this!" or "I can't wait to share this place with my kids!" We even designed our future house with two kids' rooms. They are now extra guest rooms, because the fact is, there will always be children in our lives.

I have not been kidding (ha ha) about the baby boom in my friends' lives this year—there are, like, a dozen new babies who are going to come to "summer camp" at our place on Orcas to do all the things our cousins had to do on my family's farm—planting and weeding, feeding animals and cleaning stalls, riding, collecting eggs, splitting wood, canning and freezing vegetables, and whatever other country things we can think of to subject them to. I am confident that I will be a perfectly adequate parent figure in the lives of these children, the offspring of our extended circle of friends and family.

I am also confident that I will enjoy my time on the farm without the kids, as I enjoy my time here in the city. I truly do not feel that I am missing out on some great mystery, even though I know I am. My life is full.

Ian, bless him, would've liked a kid, but has never really cared if we have children.

All he wants is me.

Patently Normal

Well, as you readers know, I officially went off chemo last week, after 52 weeks in 14 months (minus several weeks for pneumonia and the two PET scans). Yes, I had ended Taxol, the more toxic and side-effecty of my medications, in March when my first PET was normal, but my tumor markers were still high (54, of a recommended high of 37), and so I continued with Navelbine as well as Herceptin. The Navelbine allowed my hair to start growing back, but I did still have to give myself shots (4 days a week instead of 6—a "sterile environment" in which to inject myself was pretty much in name only while we were camping) and take anti-nausea meds, and Bactrim to guard against recurrent pneumonia. My hair has been coming back in, and it's doing it pretty nicely except for a weird patch at the nape of my neck where it isn't growing at all, and some apparent male pattern baldness on the top (well, male pattern thinning). This is probably because of the full-brain radiation and the hair may never go back to my former thickness, but it probably will. But it will probably take time. In the meantime, I still have my wig, and evidently my mojo. Saturday night after attending a bachelorette party, I stopped for doughnuts at our local supermarket (they were awful, by the way), wearing my goin' out black dress, some red strappy patent sandals and the aforementioned wig, and as I was walking (okay, strutting, as one can't help doing in goin' out clothes) from the car into the store, a guy walking out with a bag of beer and chips said, in a totally nice, non-creepy way, "You are BEAUTIFUL!" I said "Thank you!", and thought "Little do you know, charming frat boy." My neuropathy has likewise resolved so my toes and fingers don't tingle anymore.

Anyway, I didn't have my tumor marker (test number CA27.29) result yet last week when I met with Dr Specht because of the usual delay (I have no idea why there is this delay, but I'm assuming it has something to do with having to mix the blood with something, or age it, or whatever), but since the CT and the PET were both non-alarming, we went ahead and stopped chemo completely, in a conversation that went something like this:

Dr Specht: "I'm guessing you wouldn't mind taking a break from chemo for awhile."

Me: "Uh, yeah. I wouldn't mind." <sniff>

Today, however, that CA27.29 was ready, and it was 35! 35!!!! That, if you will remember from all my discussions of 37 being the goal, is LOWER THAN THE UPPER END OF NORMAL. Clunky designation for a number, but I'll take it. It turns out that it really was only 1008 last May, and not 1015, as I've somehow recently believed. Trying to toot my own horn, I guess.

While I have your attention, I will also say that my left eye, which had showed minor issues, has completely resolved and is very healthy. My right eye, while I am still having to do drops every morning and evening (surprising how difficult it is to remember that), is definitely better. I am still seeing distortion from a cyst of liquid just under my focal center, but the cyst is shrinking.

Also, I missed a month of riding lessons in July (although added in the 8 days of trail riding), and so today's lesson allowed me to really see how totally buff I am after 4 hours of exercise a day while I was in Idaho. My lesson, starting and stopping and trotting and cantering and stopping and cantering and walking and trotting and cantering etc was easy. And sure, it was only 62 degrees today, but I wasn't even warm. I hope I can maintain this level of fitness for awhile without the 4 hours of hiking/riding every day. Because it's awesome.

Hot Stuff

A few months ago I noticed a change in my body temperature. That is, my temperature, when measured, was still the same—about 97 degrees—but my perception of how cold or warm I was had changed. When I was a kid, I didn't have much of a cold sense. The first sunny day at age 9, I'd be outside in a hand-me-down bikini, even though it was March and probably not quite 50 degrees. I wore shorts over long underwear to school during sleety Novembers, and was comfortable in jeans and a cotton sweatshirt in the snow. I was one of the people in shorts, bare legs sticking out from the tops of my ski boots, during the last couple weeks of ski school.

Then I went to Kenya for five months in 1993, and that all changed completely. When we first arrived in mile-high Nairobi in January of 1993, most of us pale white kids from Portland, Oregon, wore shorts and tank tops in the mid-70s temperatures. A week later, when we were on the coast in Mombasa where the mercury stood around 110, and the humidity was close to there, we almost expired from the heat. Three-fourths of the way through our trip we were doing heavy labor—hauling coral blocks and mixing cement with shovels from sand and lime, pulling water from wells, and constructing a school room in that same heat—and we found it relatively untaxing. By the time we were back in Nairobi for our final few days in country, we were all in jeans and jackets in the still 75 degree weather, and not any too warm.

For some reason, I never readjusted. Since 1993, I have been wearing sweaters starting at 70 degrees, scarves starting at 65, knit caps sometimes starting as warm as 75. A 68-degree room temperature makes me cold. It feels unfriendly, and I can't relax, even bundled up. The tip of my nose ices up and stays that way.

Until this year. Sometime this last winter, my sense of cold readjusted back to something more helpful for living in the northwest. I could be outside for more than 10 seconds without developing the shivers. My internal organs felt warm. Having our thermostat set at 72 degrees felt oppressive all of a sudden, instead of comforting. It may have had something to do with chemo, but I kind of doubt it. After all, I've been on chemo several times in the last 10 years with no obvious effect on how warm I feel (with the noted exception of hot flashes when my ovaries were being shut down).

I have to say, though, that our recent uncommonly hot weather has not made me all that uncomfortable, and has perhaps, in fact, set back my adjustment to our usual climate yet again. Today is cold—about 70 degrees outside right now as I type, at 1pm—and I am having trouble with it. I'm sitting in my 76-degree living room with my warm laptop on my lap, wearing long pants, wool clogs, and a fleece jacket. I am perfectly comfortable, if still slightly cold about the toes. My nose is fine.

Evidently, I Lied.

This morning when the woman called me from that cancer organization, I told her I was currently undergoing chemotherapy. Well, as of my meeting with Dr Specht this afternoon, that is no longer true. My PET scan and my neck-to-pelvis CT both looked good. Which means that the CT showed sclerotic tissue in the bones (which is scar tissue and is consistent with healing) and nodules in the lungs that were still reducing in size—either scar tissue from the cancer, or scar tissue from the pneumonia; and the PET showed no signs of heightened glucose metabolism where we don't want it to be. The blood test results will be available next week.

In the past when I was on chemo, I continued it for 3 months after my numbers normalized and my scans showed nothing new; of course, that totaled six months of chemo. At the moment I am at . . . hold on a second and I'll consult a calendar . . . okay, it looks like I have had 52 weeks of chemo in the last 14 months. I missed several weeks when I was in the hospital, and I've missed another couple weeks to prepare for the PET scans, but that's a year's worth of weeks, anyway. That's a lot of toxin.

That amount of toxin has depleted a lot of my natural stores of immune-supporting vitamins and minerals, and I've pretty much not been taking any supplements during this time (although I do eat a largely organic diet, which hardly ever includes any sort of processed foods.). Vitamin C can interfere with the efficacy of chemotherapies, and the natural supports for specific, known issues—B-6 for neuropathy, calcium for bone strength, folic acid for I don't know what—is small and cautious. I am hoping to work with my Witch Doctor to build up a more complete internal support system, which Dr Specht is carefully supportive of. It is not her area of expertise, and she wants to be sure that anything I plan to do outside her jurisdiction is still discussed with her. I completely understand, and I completely agree.

That amount of toxin has also reduced the cancer load in my body to an invisible amount, at least for the measuring tools we have. As for my specific treatments with Dr Specht, for the foreseeable future I will having Herceptin infused at the clinic once every three weeks (well, I'll go next week, and then start the 3-week cycle after that so that I am cleared for my next trip to Jerome Creek, for two weeks in September.), with regular meetings with her, regular blood tests, and additional scans at various, relatively short, intervals. There is a new drug that I may begin, if my insurance approves it—it costs $4,000-$5,000 per month, so they may not. There is some belief that the new drug, being a smaller molecule than most chemos and Herceptin, will be able to cross the blood-brain barrier and help out in my head. Dr Specht said that lots of doctors hope this to be true; Jason does not believe it to be so. I figure, first I'll see if it's available to me, then I'll decide if I want to use it. It's oral, so I could take it at home at my convenience, but it has the unpleasant side-effect of diarrhea, which, as Dr Specht said when she first introduced the idea of this medication several weeks ago, will probably not be bad enough that I will need to be hospitalized. Sounds like fun.

Anyway, I am thrilled that I get to spend some time without the nausea (albeit minor), the fatigue (even though small), and the weekly hassle (the true bane) of chemotherapy. I almost don't really believe it—I still have a fridge full of expensive Neupogen (ooh—black market dealer!) and a stack of syringes next to my dining room table. I have several pills left in one of my bottles. And I suddenly have two Thursdays out of every three FREE!

What to do first???

Phone Call

I just received a phone call from the Cancer Fund of America. I wasn't going to answer it, because I'd just walked in the door from dropping off Ian at work and taking the dogs to swim in the bathwater lake, and I needed to make a breakfast (I've had coffee—iced, with raw whole milk—but not yet my yoghurt and fruit), but I did answer, and here is what the lady said:

"We are an organization dedicated to helping women with various types of cancer get the care and supplies that they need."

And I thought wow, someone is calling me up to offer me some assistance, after all these years and all these treatments and all this therapy. I felt touched, and was looking forward to saying that no, I didn't need anything, that I have all the support and assistance I could ever use, and please find someone who needed help.

She went on, reiterating the assistance they offered, then paused briefly, and I was about to explain that I am fine and taken care of, and she said "So will you be willing to look over some information that I send you in the mail, and make a donation to help someone with cancer?"

I thought what?!?. I said "I have been dealing with cancer myself for ten years. I am currently undergoing chemotherapy. All of the resources I have, I need, to keep myself alive and healthy. "

She said, "Well, it doesn't take much to help out, just a little bit. Can I send you the information?"

And I thought, did you not just hear me? "No," I said, "I am not in a position to help others in this way right now."

Perhaps I am being selfish, childish, unkind. Because I have been, and continue to be, very lucky in my care. However, I have spent probably a couple hundred thousand dollars of my own money, a couple million of insurance money, and ten years of my life helping people—not just me—with cancer. At the moment, I tend to feel that that, plus however much more I have in my future (which will always be an unknown), is enough.

Back in the Saddle

Funny how, in this case, that phrase, "back in the saddle," means exactly the opposite. Instead of getting to ride and hike today, I got to spend several hours in the SCCA clinic, celebrating my return to city life with a PET scan and a concurrent CT (results Thursday afternoon). It just feels like kind of an . . . indignity, I guess, to come back from 10 blessed days of freedom into a place of 24-hour white noise, static, light, and unavoidable social intervention, and then have to spend most of my first hours here at the clinic getting needles jabbed into my arm, and being pumped full of radioactive glucose (stay away, all you new and soon-to-be mothers I know) and "berry"-flavored barium ("berryum?"), all on an empty stomach.

I had stopped by the PCC last night when I got into town, before even coming home (I knew there was nothing breakfasty in the house and I was pretty sure I wouldn't have the energy to leave again once I got here). At home, there were several messages from the SCCA reminding me of my appointment today and asking me to call, because there were several preparation issues that they had to go over with me. Now, why not just LEAVE THAT INFORMATION ON THE VOICE MAIL when it becomes Friday afternoon, right before you leave for the day, and my appointment is Monday morning, and YOU HAVEN'T REACHED ME?

I, however, am responsible, so I stopped eating last night 12 hours before my appointment, just in case, and I called them this morning at 8:00am when they opened, to find out what the restrictions were. I tried to look up the test prep instructions last night on the SCCA website, and as far as I can see, it would be a clever place to post all that info, but there was nothing. Anyway, I found out that, unlike a pure CT where I am allowed to have black coffee and even food 3 hours before, I could have nothing but water. They were even leery of my prescriptions, so I just took the Keppra and figured I'd be fine for a day. I left my bellybutton ring in, even though there was some complaining about it last time, because it could distort the image. I pointed out that I have never once had any exam--MRI, CT, PET, EKG, EEG, or anything else I may be forgetting--with the bellybutton ring out, in 10 years, and so, wouldn't it be better for any potential distortion to have things be the same as always?

Anyway, I didn't actually get home to get my coffee (iced, because it's about 90 degrees here right now) until about 2:45pm. I had two (with only a minor meltdown when the milk spilled all over the counter because the dairy had filled the container too full), and then a huge, awesome bowl of fresh fruit (pear, cherries, and blueberries and raspberries that Marsh picked and gave me generous portions of last night), with whole-milk Greek yoghurt, honey, walnuts and cinnamon on it. I think I finished my first meal of the day around 4:00pm.

Fortunately, the dogs are still in recovery mode, and the fact that they have had virtually no attention from me at all today, after days and days of never being free of me, has not seemed to disturb them. They are both still sound asleep, apparently unaware that their usual city dining time came and went almost an hour ago.

Ian arrives at SeaTac at around 11pm tonight, so we'll all be together again soon.

In Idaho

As it turned out, I was feeling slightly compromised yesterday morning from my new drugs, but not terribly so. I took my time packing things and organizing the house, and right before I loaded the car, I drove into Fremont to return a library book that would've cost over a dollar to return after I got home. I figured that, even though the drive totaled about 2 miles instead of 300, it would give me a good sense of how I felt operating a car. It turns out I felt fine—almost completely normal, and actually more normal than I felt walking around the house. As I told Alice, I thought I was maybe 15% impaired, so that put me about even—of course—with most of the population. So I loaded up the dogs and we got out of Dodge, turning onto Wallingford Ave at 2:00pm.

The trip was completely uneventful. I chose to drive the speed limit the entire way instead of pushing limits, and I set my cruise control at each exact speed on the dot. I was surprised to find what a pleasure it was, and how unstressful, to not be constantly wondering if I were going to get caught. Hmmm . . . new habit to be formed??? I was also pleased to see two or three of the cars that had passed me on the side of the road accepting speeding tickets as I drove by at a leisurely 65 mph. I saw a lot less traffic than usual while I was going the speed limit; the few cars I encountered were passing me, with the exception of an RV-trailer mess that pulled out in front of me in Washtucna. I was going 65 coming down the hill, no one behind me. He pulled out, in the bottom of the valley where highway 26 starts up the hill again, causing me to practically slam on my brakes. I had to get down to 20 to avoid hitting him, and as soon as I could pass I did, laying on my horn the entire time I was next to him. I mean, really.

We stopped twice, once for milkshakes and once for gas. The 4-Runner averaged a respectable 22.4 mpg, and we arrived in pretty close to 6 hours.

There are four dogs for me to play with this visit—two chocolate Labs (Spackle and Tessa, who used to belong to one of K's nieces, but was banned from Seattle after she nipped one too many toddlers), one Australian Shepherd (Sadie), and one Hoover. Sikem was left alone this morning, and he has been unhappily broadcasting his woes ever since. Later this afternoon when it's maybe not quite 90 degrees we'll have our first ride.

And, for the most part, I'll probably be posting on the Dilettante Traveler for this trip.

Best of Both Worlds

Just got off the phone with Dr Jason, who said that my EEG was completely normal. Even though it was completely normal, he thought that the fact of the early MRI and the other few strange things I've reported recently were worth noting, if not worth a great deal of concern, and so he shared my story with a neuroscientist colleague of his. They agreed that, since I hadn't really had a problem with Keppra, the anti-seizure med, I should go back on, just as a precaution. I am fine with this.

The one problem with anti-seizure meds is that they can make you feel a bit dopey at first, which may get in the way of me leaving for Idaho, in my own car, under my own direction, tomorrow morning. I promised I would not drive while dopey. From what I remember last year, I felt pretty drunk and discombobulated for one evening last year, and then normal the next day and from then on. So I may be fine, and I may be on the road around 10 as initially planned. Anyway.

EEG Scheduled

I'll get my EEG at 8:00am tomorrow morning. It should take about two hours, depending on how quickly I fall asleep for the second part. I thought it would be a good idea to cancel my Woodinville appointments for tomorrow, even if I could arrive in time, so after the test I'll be returning home. Although I have just invited my mother out to lunch, and we do still have a meeting with our architect, which I moved up from 4 to 2. But I'll be in Seattle, at least. That's rest, right?

Possible Minor Seizure Activity

So I was scraping paint on the doors to Ian's workshop late this morning, prepping them to repaint to match our gorgeous repainting job that was just completed on the house, and I was feeling pretty darn good. I felt energetic and was pleased to have the strength and interest to do this small home improvement task. I called Ian and we talked briefly about what color the doors (French, with lots of windows) should be painted, and decided white to match the bulk of the trim, instead of navy blue (little trim) or green (doors on the main house). I got off the phone and realized that I was beginning a migraine—annoying, but I've had them enough that I wasn't really alarmed—and so I pretty much ignored the fact that I was seeing increasingly less well and continued scraping.

I finished the scraping about 10 minutes before my brother was due to join me for lunch, and went in to lie on the couch with my eyes closed. Deane arrived around the time that the visual part of the migraine was going away. As usual, there was no pain and virtually no nausea, and I felt that the fact that I could "feel" my stomach was as much related to the fact that I hadn't eaten much yet today (a latte and a peach) as any migraine activity. The thing was, though, that I was stupid.

I took Deane into my office to show him some pictures from our recent San Juans trip, and I had a really hard time remembering a lot of words for a lot of things I was showing him—basic things, like "campsite" and "composting toilet." I could eventually get most of the words out, but it was distressingly, alarmingly slow. It helped a bit that Deane kept talking about people we both know and whom neither of us could remember the names of—not just me—but it was still weird.

We walked down to the Essential Baking Company and ordered our lunch, then, while we were waiting for it to be delivered, all of a sudden my right hand went numb, like it did about 3 months ago out at Mom's. Frankly, combined with feeling a bit dopey, it made me very alarmed and so we left and walked back home. As soon as we were on the road, I called Ian, who told me that he had also been having numbness in his hands, and generally helped me to relax a little and not worry. By the time Deane and I reached home, my hand was normal and I could remember my (generally quite extensive and colorful, I like to think) vocabulary again.

I paged Dr Jason, who I had to talk to anyway about my last MRI, and told him what I'd experienced. He thought it sounded like it could be minor seizure activity, and recommended that I get an EEG this week to scan my brain activity. Based on what the EEG says, I may begin antiseizure meds again (I was on them for a few months last year). The main side-effect of antiseizure meds is a sort of mental fogginess, which in my experience faded after a couple days. My MRI continued to be good—that is, lesions showing no change or shrinking, so whatever was causing my experience today was probably not tumor-related. It may very likely be a radiation-related injury, though. The symptoms seem to match the symptoms of an occipital migraine (thanks, Witch Doctor) . . . but google also has some articles about how occipital seizures mimic the migraine aura.

Dr Jason promised to get me in for my EEG by Thursday this week, as I said that I was hoping to be in Idaho taking care of his parents' place by Friday. He did not say "Oh my gosh, you should definitely stay home!", which I take to be a good sign.

Nevertheless, I don't think I will drive anywhere this afternoon, after all.

Over at the Dilettante Traveler

I'll be posting from the DT for a couple posts here. However, if I don't get my first one in tonight, it'll be next Wednesday or Thursday until you hear anything. Rest assured, I'm having a good time.