Sunday, November 22, 2009
Friday, November 20, 2009
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."
Thursday, November 19, 2009
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.
Tuesday, November 17, 2009
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.
Monday, November 16, 2009
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.
Sunday, November 15, 2009
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.
Thursday, November 12, 2009
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."
Tuesday, November 10, 2009
Thursday, November 5, 2009
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.
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.