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Thursday, May 15th, 2008
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9:45 am - Brilliance
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First, I am weeks behind in posting about a breakthrough in thinking about art. The breakthrough, thanks to a spur-of-the-moment visit to the Seattle Art Museum with ![[info]](http://p-stat.livejournal.com/img/userinfo.gif) betanoir, is that I need more art in my life.
( Read more... )
And something about the changes Focalin has made in my thinking, combined with my own efforts to change my thinking, and various unknown factors, has brought on this flood of creativity. Brilliance. Colors, lines, weight, light, movement and meaning. It is overwhelming, sometimes. But it is usually overwhelming in a very enjoyable way, rarely reaching an unpleasant sense of flooding. I would rather be overwhelmed by beauty, movement, and meaning, than by fear, confusion, and isolation. So I intend to embrace it.
And here's the jewel of my recent creativity, an extremely practical, original, artistic way to keep my soap drained and clean on my bathroom sink. There is limited space, and it's an old enameled iron sink which had a worn-out brassy soapdish which never really worked. I removed the skewed (it seems to have been put on crooked many decades ago!) green-crud-causing soapdish. And I replaced it with... (drumroll)
( Read more... )
It reminds me, in a tiny, bathroom-sink kind of way, of one of my favorite artists, Andy Goldsworthy. It's a turning-point in my thinking about my own competence, my own sense of design, my own creativity, and my own skills and abilities. My artistic nature is coming back, but it never really died. It was hiding, discouraged, for too long, but it's back. Something has changed radically, and something has lifted. I have some more positive, encouraging voices re-appearing in my life now (more on this later) and I am waking up.
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| Monday, May 12th, 2008
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11:28 pm
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I considered deleting the previous post, but that seemed (1) cowardly? (2) unscholarly? (3) misleading.
My feelings are what they are. I have a responsibility to transform my thinking and find what's good, and right, and constructive. I have a responsibility to do more good than damage. But I'm no authority on the topic of turning oneself around, and I won't pretend to be. What I am is a mess, physically, mentally, emotionally, behaviorally. A sick and struggling person, working with undeniable damage, refusing to give up on this process. I refuse to give up, and I refuse to delete this journal. At the very least, it can be a record of how low a person can feel - how alienated, panicked, regretful and ashamed - and still find the means to transform what's left into a good life. I will still learn, and I will find This is a record of how it is, to be followed by how I turn this around. However that is to go, you'll be the first to know. I figure half a miracle is a good start: I may almost have the catastrophe part adequately outlined.
Tomorrow, I will eat more carefully. And record what I do right. And tell you about the astonishingly artistic item on my bathroom sink.
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6:13 pm - life as a dog...
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My sense of smell has become ridiculously, unbelievably hyperacute at times. Walking up flights of stairs from the laundry room, I smell... so many smells. Not merely a different set of smells at a good distance from each apartment's door. But I run into different smells crowding each other on the walls. The smells seem to lie flat in the air, like patches of molecules, inches away from the wall as I pass. It's like swimming through patches of warmer or colder water. They border each other and they overlap. It's fascinating, bizarre, disturbing, distracting. The most mundane activity becomes surreal, and I'm so tired.
I have to find hope.
I have to sniff it out and seize it wherever it hides, like an animal desperate for life.
It has been hard to eat today, not because of nausea or discomfort, but because of loneliness and grief. Somehow I have to force myself to eat something with iron in it. Yes, I do know what to eat. Sometimes I am so overwhelmed that I forget how to eat. I am so tired.
The crows are flying low these days, with meat in their beaks for their babies. I can almost smell it.
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| Friday, May 9th, 2008
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4:00 pm - I am O.K. after Navebine chemo
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A little nausea and fatigue have made me aware that this really is chemo, of course. Scents are more intensified than I can remember, in a way which surpasses the effect of radiation - but it's not as unpleasant as the radiation-distorted odors. There's a weird burning feeling which morphs into a "smell of something burning" in my lungs. I'm choosing to think of this as Navelbine attacking cancer cells there. It took me nearly a week to stop trying to find the source of smoke, or "burning chemicals." I may be smelling something, and not imagining it, but in reality it's no more than tiny traces, particles in the air or in my lungs. My senses are hyperacute again, to go with my underlying state of being hypervigilant and hyperreactive. This is just one more thing to work around. I'm learning the territory.
The implanted port is healing, b'esrat HaShem. And that hypothetical person I mentioned, you know the one who might hypothetically get socked in the chest really hard by a hypothetical mugger? He'd be O.K. - these ports, while providing a line to the heart's blood, apparently do not cause fatalities if hit hard. (Someone needs to tell this to my adrenal glands in a language they can understand.)
I am rushing to get ready for Friday night, which I am determined to set aside for observance of Shabbat. I haven't quite managed to achieve that practice as completely as I'd like to, but my approach to everything now is bit by bit, movement, effort, intentions, something rather than nothing... hopes without expectations.
Or maybe that's hopes AND expectations. While I'm working on my own flexibility, some strongly defined goals and needs have come up after this past week. I have been tearing through my apartment and my mind, removing clutter and stagnation. If you've talked to me on the phone recently, you may have noticed that some of my thoughts have come out in a jumbled and anxious way. A few doctors and two therapists have informed me that this is reasonable, and normal (NOT "psychotic" which is something I had worried about) considering my intense load of stress combined with the aftermath of a difficult recovery from general anesthesia. I figure if doctors and therapists consider my reaction normal, I can accept that as a reasonable view, even while I address what I intend to correct in my own thinking, choices, and behaviors.
( Read more... )
current mood: meshivat nefesh
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| Thursday, May 8th, 2008
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12:00 pm - the moment
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My second (of once-weekly for 12 weeks) Navelbine chemotherapy is at 1:20. Blood draw is at 12:20. The new port will make this easier than finding a vein. Someone pointed out last night that this port is very near my heart chakra. Symbolically it may represent opening my heart. Unfortunately, my heart has been overloaded with words. A flood of words, a storm of anxiety. I have so many things to fix about myself. I need to fix myself so I can be capable of choosing life. I'm full of anxiety, words, and mistakes. And in that chaos, there are good intentions down at the bottom. Sometimes I am afraid that these good intentions are lost, impossible to see, and worthless when it counts the most. And then I discard that fear, because it does me no good. Survival first, details later.
O.K., I'm off to the hospital now.
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| Tuesday, May 6th, 2008
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8:01 am - Who Will Live and Who Will Die
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Survived port surgery (YES, I was a little worried because of a few factors including the general anesthesia, my medications, and some quirks which put me into touchy territory) and I'm healing.
I don't know how to thank those who thought to call, text, or comment here wishing me a safe and successful surgery and a good recovery, and even offering help. You are part of what keeps me alive and fighting for more life. I have been going through some anguish - a major breakthrough in my psychotherapy, followed by this surgery, seems to have opened the gates. I wish I were not dealing with so many losses at once. It's overwhelming. And I need to focus on the real fight: building up my life-energy to fight the cancer itself.
I have great, positive things to write about: surges of creativity, complete intoxication with colors, design, ideas, inspiration. Brilliance. My mind is spinning with the best thoughts, but for some reason I have not been able to complete an LJ entry on the topic. Maybe it's too big. Or I'm too exhausted. But you can expect it any day now, after I whine a little more about being scared and lonely and sore.
I hate this ugly process of letting go of various illusions of support. Reality is really fucking painful.
This whole thing is an ugly, painful process at times. Ugly and painful like war and childbirth.
------------------------------------------- ( Read more... )
So, back to this list of who is identified as not to be treated. The list includes those with a "slim chance of long-term survival," and those "with a severe chronic disease."
I intend to fight and beat this breast cancer. Some stage IV cancer patients DO beat incredible odds, to survive for many years, and some even have complete remissions. But STATISTICALLY, I am in a category considered unlikely to survive. I have every intention of being one of the exceptions to these odds, but someone looking at only the odds would put me in the group sent to die.
I feel as if I am fighting for my life on several fronts. There is the cancer itself. And there is this terrible political cancer, an ideology which sees human beings as commodities, materials to be used. We are weighed and measured in a system which seeks the acquisition of surplus value above all. And we've been sold this idea disguised as what we love most about life. But it is the enemy of life.
Sometimes I thank G-d for this chance to see it from this angle, to learn life-and-death social empathy. That passes, because I am human and fighting for my own life. But I am writing this down so I can keep what I am learning.
And now I'm going to focus on fighting for my own life. I am putting this fear on the shelf, and going to enjoy the day. Expect a happy post about good things next. It is all part of the whole.
Those who are still with me, tell me I'm not alone. It helps.
current mood:  awake
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| Thursday, May 1st, 2008
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4:20 pm - First Round
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I got my first blood-draw with the port - wow, how nice! No struggles with my scarred-and-scared veins, just a handy little jab near my heart, and it's... blood. Whew. And an hour later, I got my first dose of Navelbine. After a month of this, they will be adding Avastin to the routine, but they want my port to heal thoroughly first.
I came up borderline anemic, which is a little surprising. I thought I was eating well. And this is BEFORE chemo. So I'm going to have to put some effort into getting naturally-chelated ("enriched" white flour will not do it) iron in my food. Great example: cooked spinach, in an organic, kosher omelet made from eggs laid by unionized, self-actualized chickens. The cooking of the spinach is what helps. They want me on a "high protein diet," which is confusing, because I feel that my diet is already pretty high in protein. Who knows what's going on there, but I have to work on making it better, whatever it is.
But it was easier than I'd anticipated today. Let's hope it goes well.
I have things to write, but I'm going to go lie down now, hit the re-set button, and come back later.
I'm still a little befuddled after the general anesthetic yesterday. I've misplaced a few things, including my ID. Ha. Just for now, I'm going to take some time out, and rest, and let the chemo do its work to smash the Bizarro-Ivy cells to smithereens, and then into air into thin air...
current mood:  blank
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12:12 am - Quickly, THIS is my anti-Odwalla!
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Fresh orange juice, what a concept! What could be better! Well... looking at what's available, even the high-end bottled OJ, $3.50 or so for a TINY little half-bottle of Odwalla at certain delis, let's see what we get for that $3.50.
Flash-pasteurized (because realistically, cow poop HAPPENS, and somehow the mega-manufacturers of juice can't be expected to keep bits of it out of their machinery and their juices) juice is STILL pasteurized. If it's heated enough to kill germs, it's heated enough to kill vitamins, enzymes, and intangiables. Heat and vitamin C have never mixed well. Do I want "flash" heated orange juice?
Plastic bottles. Hey, for years we were all told how silly it was to worry about plastics. And now, month by month, scientists, researchers, doctors step up and say... plastic may be doing more harm than we knew. I prefer to minimize my contact with plastics, specifically acidic drinks which have been stored in plastic.
Time, time, time. Yeah, it's sealed. Refrigerated. IF its's kept relatively cool and away from light (hey, check out that crazy SUN thing at QFC! Do they think we want to buy wine, fish, and fine oils that have been sitting in bright, direct sunlight? What is it with whoever designs grocery layouts and the FULL SUN shining DIRECTLY on the food? And how can anyone continue to buy this stuff?) sure, it will taste better. But the bottom line is that this was squeezed some time ago, on equipment shared with WHATEVER, then "flash-pasteurized" to take care of any stray deadly germs from stray bits of stuff we'd rather not talk about at breakfast. Tick tock, tick tock. Squeezed juices do NOT get fresher as they sit on the shelf.
All right, that's enough for me. No wonder Odwalla adds gooey, overly-sweet "naturally derived" pulps, nectars, and syrups to their plain juices. Sugar sells. Maybe their plain juices just don't have the vibrance a plain juice should have. I gag on their thick, too-sweet, mushy-pulpy. confectionish "nectars" and "fruit smoothies." All I want is pure, clean, fresh juice.
( Read more... )
current mood:  Duh!
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| Wednesday, April 30th, 2008
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11:00 pm - awake... and back to sleep
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I was too out-of-it when I got home from surgery to post this. Since Fentanyl does not work on me, I had to have the portacath surgery at the UW Medical Center, with full anesthesia. I must note here that the surgeon and the anesthesiologist were the best, both people I would have picked out of a bunch if I'd been able to select them myself. Decades apart, each exhibited a great down-to-earth sense of humor, authentic optimism, and real caring for their patients. It must take uncommon courage amd harder work than ever, these days, to stay positive in medicine. I felt safe, confident in both their strong skills and in their positive attitudes toward me. Meeting them before surgery, I am sure, helped my surgery to go well.
I got the use of a no-frills hospital bed for about an hour before being sent home. (Pre-Bush-era, I probably would have been in a nice, clean hospital bed after surgery, RESTING with medical supervision, instead of jostling home on the rush-hour freeway, unable to wear a seatbelt across my fresh surgical incision and close-to-the-surface implant, fading in and out of consciousness as the general anaesthesia wore off.) I'm home now, with a bit of pain, but it's "eh, who cares!" level pain. I wonder what it would rank on the Great Paintings Scale of Pain. It's not The Scream at all... but certainly higher than Mona Lisa. It's warmer than Madame X, although I'm tempted to rate it Madame X on the Pain(tings) Scale because of the way people are carrying ON about my collarbone... yes, it will show. Yes, I am O.K. with that, although my clavicle has always been one of my better features. And wow, was it ever weird to be called "a petite lady" by my surgeon. "Petite" is not a word I'd ever use to describe myself. But there just isn't a lot of extra room or any extra fat on my chest, so the port is going to show on me more than it would on most otherwise-similar patients. Eh. But the pain... the so-called pain. It's softly sharp and pleasanty burny, like a new tooth when you're a kid. It feels like an arrow through a wing, when all it takes is removal of the arrow, and the bird will fly again. I have an aching throat from the breathing tube, but that has the oddly happy quality of the way it feels after a night out... pleasant hoarseness after conversing over music and laughing too loudly. I remember that. This is not a bad pain.
This is a happy pain. I have this gift of battle, a fantastic chance to fight and take my life back. I will fight resentment, stagnation, disappointment, discouragement, pessimism... while the doctors make it possible to fight cancer cells with serious weaponry derived from Madagascar's Rosy Periwinkle.
I have more to write about, but that will take a lot more words. I have those words, but they want to go lie down again now. Next, something about art, friendship, fun, positive life energy... a brilliant visit to the Seattle Art Museum recently with betanoir which brought back that sense-of-wonder I used to have so much, and reset my attitude toward joy and inspiration. I need to experience more art in my life. I need to live more, to discuss and feel... and not so much stress about acquisition of STUFF. Sights, sounds, experiences, feeling, doing...
So, more about art and less about hospitals! When morning comes. Or sometime after chemo, which is tomorrow at 12, at SCCA. I do not know how long it will take, but my experience with chemo is to expect at least an hour or two. By tomorrow afternoon, I expect to find the words to describe some inner changes.
Text me if you feel like being someone who can pick me up after chemo in the future. We can get tea and socialize a little on Capitol Hill, and I think it would be a happier way of doing this than just scurrying home on foot or in a cab. I need to be around more people.
current mood:  optimistic
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| Thursday, April 24th, 2008
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6:47 pm - surgery is on
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Update... just got a call. It WAS a mix-up. Someone mistook ONE UW Medical entity for the OTHER UW Medical entity, and mistakenly told me that my insurance wouldn't cover the surgery. But the detail Bruce caught turns out to have been correct: I most definitely AM 100% covered for the UW Medical entity where I would be having the surgery. I was covered all along, contrary to what I was told.
Whew.
It was a mistake anyone could have made, thanks to the inherent screwiness of the (1) similar names and (2) ridiculous "preferred provider" nonsense. What a mess. But then, this is the town with two First Avenues, Olive and Olive, and the intersection of Bellevue, Bellevue, and Bellevue. Why not two University of Washington Hospitals, one a "preferred provider," and one NOT a "preferred provider?" SURE, why NOT...
I want yesterday back. Other than that, I'm doing very well, and things seem to be falling into place for the next phase. I'm shocked, but in a good way this time.
current mood:  shocked
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2:00 pm - staying calm
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euterpe35 is over here, and she brought her doll Lulu to play with my Esti doll. We are all, the four of us, watching a movie called Beat Girl. I am trying to stay calm while waiting for people to get back to me about the surgery... one weird glitch which may make a difference is that there are TWO entities known as UW... UW Hospital and UW Medicine, or something. One I'm covered for 100% and one I'm not - I'd have to pay %40 of the cost of inpatient surgery, yikes. We'll see which UW is which. If it turns out I'm not covered, I really can go to another hospital - it's just so distressing to have to change plans in the middle of such urgent treatment. My low blood sugar yesterday from fasting for surgery exacerbated my panic. Yesterday was one big meltdown. What a horrible, horrible day. Today is better, but I wish I could just curl up and sleep until someone's ready to tell me what's next. I am not good at waiting. I hope to know what I will do for this surgery by Monday or Tuesday.
I plan to get well and do something to help other women avoid this kind of stress.
current mood: thankful
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| Tuesday, April 15th, 2008
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12:00 am - Vinca Pervinca
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A nurse at the pain clinic, whose fully-engaged smile elevates my immune system every time, gifted me with this little detail today. My new IV chemo drug, Navelbine, comes from the periwinkle plant.
And this means, aside from Navelbine's value as a chemo drug per se, (did I just hear a couple of you ultra-rational types bonk your heads on your keyboards?) that I have a symbol to latch on to. It's an especially hypnotic-looking flower, with many fine qualities bees look for in a flower: purpleness, blueness, extra hidden fluorescent spirals. No scent, but visually it is bee porn. And as this plant's five-petaled invisible-violet-spiraled flowers form targets for bees, so symbols form targets for thoughts. This is just what I needed. I'm collecting information on periwinkle symbolism. Here we go. Good stuff.
( Read more... )
current mood: artistic
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| Sunday, April 13th, 2008
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6:13 pm - hour of anguish
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Mornings are brutal. No matter how wonderful, strong, beautiful, loved, and ALIVE - or at least determined to get that way or stay that way - I may have felt the day before, I wake up 8 out of 10 mornings in the worst psychic pain. Torment. I lie there for 20 minutes to an hour, contorted in grief, sobbing, silently screaming at God. Begging for my life, I choke on the words, I writhe in my thoughts, as if drowning in a stream of horror and despair at this terrible illness I'm fighting. I see my days go by, and my good days seem almost wasted at times. The loss, regret, and deep shame of what seems a wasted life - and now so much of my freedom to choose and to change, to use what I've learned, finally, to LIVE... seems taken from me. I do not want to die. Though I have never been bored with life, not once, I have been terribly unhappy at times and I've let myself indulge in despair. But now if only I could have those years, not even twenty, but ten or even five years, which I might have expected to live, I will not ungratefully pout about what I do not have. I have learned gratitude in one of the hardest ways. I have learned to accept my life as a gift, and not to insult the Giver by envying others' beauty, acceptance, and lovability. It's taken this long for me to recognize what I had, and what I have. And now keeping any of it is a desperate fight.
I think maybe I fight going to sleep because I dread the anguish and horror of that first morning hour.
Part of this is that I am alone so much. I want my friends, and acquaintances who may become friends, to see me NOW, strong and well-recovered from the radiation treatments. I am so afraid of how my appearance may change after I start the chemo. Yes, I have been through chemo before: IV Carboplatin and Cytoxan in 1992, IV A/C (Adriamycin and Cytoxan) and IV Taxol in 2005-2006, with oral Femara followed by oral Exemestane and intramuscular Faslodex 2007-2008. Yes, because of genetic luck (LOL) and fierce determination to research ways of renewing my skin's appearance, be'ezrat Hashem I have managed to fight the effects of the chemo in some key ways. (Yes, I am working on a skincare booklet for my doctors to give their other chemo patients!) Be'ezrat Hashem, I feel that I look pretty good right now.
I'm just afraid this little window may close on me.
( Read more... )
current mood:  cold
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2:31 am - synaesthesia
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Every angle of the day yesterday was extraordinary, from the black, turquoise and bottle-green dawn, with loud, liquid robin-song, to the sumptuous breezes blowing in my windows now. How does wind have such qualities? Tonight it is so soft, thick, silky, soothing and body-cool like a clean cotton blanket, dense like velvet, sweet and reviving. I think the trees' loads of cherry blossoms, that luminous pale-pink storm, added rare and subtle, lingering perfume oils to the wind. Those pale, glowing ballet-pink clouds, emptying into brilliant sunlight, against dark green or bright green foliage or the perfect forget-me-not blue sky. The air blowing across my bed still tastes and feels like these colors, this pink/green/blue distillation.
I want these colors, all of them, colors, sounds, textures, in a perfume. Is this asking too much?
It seems so simple. I have a list of ingredients, and I'm sure I could blend them into this perfume.
I only need for you to bring me the essences of (without harming at all, of course) a few things:
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current mood: asleep
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| Friday, April 11th, 2008
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10:18 am - Netzach
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After a weekend of extreme grief, sorrow, rage, alienation, and some panic, with the most valuable words I've ever seen and heard in my life coming in from friends, and from my medical team, advocates, and therapists, I'm somewhat "back," and I'm working on a Plan. I am feeling strong, happy, and optimistic.
(The story so far...
Metastases of the breast cancer have been detected in five spots, the largest of which is about the size of a small marble. Two lymph nodes, one over my heart to the right, and one in my neck on the left at my collarbone, are involved. And three spots in my lungs, spaced with eerie regularity, upper right lobe, upper left lobe, and lower right lobe. Five spots in my chest and neck, large enough to show. This indicates the extreme probability that there are tiny "seeds," maybe just a few cells, of this same cancer throughout my body. The "good" news is that breast cancer usually avoids the heart, and that it's unlikely to have invaded my brain at this point. I'm hoping that latter part is true, because I have been experiencing many episodes of spasmodic jerking, tremors, similar to the kind of movements brought on by near-sleep. I am hoping that my first hunch, that these are related to either the Focalin or the pain medication, is right, and that these tremors do not indicate brain involvement. Chas v'shalom, and insert your choice of any favorite religious, cultural, or superstitious anti-evil, anti-doom gestures and phrases here: this LJ values diversity. Atheists, agnostics, and those rationally-inclined may also shake a biology text, a favorite mathematical formula, or the Periodic Table of the Elements around in the air at this time.)
So, anyway, The Plan.
( Read more... )
current mood:  till victory
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| Sunday, April 6th, 2008
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2:16 pm
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I need to go to the park.
I need air.
I need sunlight.
I need to see something green.
I am forgetting to breathe.
I am fighting against giving up.
I keep forgetting to breathe.
I keep forgetting to live.
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| Saturday, April 5th, 2008
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11:00 am - April
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I have fought so hard for so little.
I just had this little window of feeling good, of thinking clearly, of really feeling like good company, someone people might want around. I felt like someone people would want to include in their lives again.
But if the chemo takes that away from me, AGAIN...
I can't face another two or more years of sickness and isolation. Realistically, this chemo I'd be going into would continue for the rest of my life, which is not looking long.
This is looking like bleak hell, for nothing. Chemo, so I can sit home in my bed, alone, friendless. Dying.
I am seriously considering declining the chemo, which is set to begin next week. This (they say) would shorten my life to a couple of months, a year at the outside. But at least I would have my personality, my energy, my new creativity, my newly-sharp mind.
And if my old friends decide not to be around, won't take my calls or return text messages, I could at least have some hope of going and making new friends in the time I have left. With the way my mind is working right now, I have something to trade, in a friendship. I have wit, I have creativity, I'm good company, for the first time in over two years.
I can't go back. I can't go through this isolation again. I want what I have now, rather than another dragged-out period of being sick on chemo and being left out of things, abandoned and ignored by former friends. I don't want what's left of my life to be like this. It would not be worth living.
I am leaning strongly in the direction of declining the chemo next week.
current mood:  indescribable
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| Friday, April 4th, 2008
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4:00 pm - contact with the enemy
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The two tumors in my spine have been knocked into dormancy by the radiation. The one between my liver and kidney has not grown, but shows some signs of activity.
Three spots in my lungs have grown. And two new lymph node tumors have appeared, one on the right side on top of my heart, and one in my neck on the left side. The largest of any of these is about the size of a standard blueberry or a smaller marble.
This means that the Exemestane and Faslodex are not working to keep the cancer in check. The radiation hit it, but new metastases have sprung up. And those plummetting tumor markers, as I had warned, do not mean a damned thing. This is why I was cautious.
It is unlikely that breast cancer will enter the heart, even if it is nearby. And my brain shows no signs of metastases, even though there is a bad lymph node in my neck.
Without chemo, I would live between a couple of months and a year. With chemo, I may live longer than that. But it is going to have to be different chemo. I have decided to start with a chest port to put Navelbine and Avastin directly into my heart, and then switch to Xeloda pills and Avastin. There is also a Taxol-based chemo which I am holding out against as the last choice, because Taxol is absolutely vicious for me.
(I will still continue to take my own natural anti-estrogen supplement therapy, which is refined from broccoli, and to avoid estrogenic foods and estrogen mimics in household and personal products. No soy, no lavender, and vote for Obama on the way to a real revolution, please, go smash carcinogenic capitalism for me. LOL. I'm quite serious)
Thank you for reading this far.
Of course I am going to fight. It's my nature. It would be absurd not to fight. And I'm going to try to secure for myself the best possible life for as long as I can.
Before that, though, in preparation, today I am going through some hours of raging grief. Absolute raging grief.
( Read more... )
current mood:  crushed
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| Wednesday, April 2nd, 2008
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8:01 am - out of the dead land
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I have a PET scan today at 8:15. This extremely sensitive full-body scan, measuring uptake of radioactive glucose, should show whether the three soft-tissue metastases in my back, close to my spine and between my liver and kidney, have grown, shrunk, or stayed the same. It will also show any new trouble spots.
I haven't said much about it, but I've been scared witless about this. It's the test of four months of Faslodex and Exemestane, an anti-estogen drug therapy aimed at shrinking these estrogen-receptive tumors. It's also the test of how successful last winter's radiation treatments were. And approximately two weeks ago, I had a recurrence of major numbness and tingling at the site in my right side, hip, back, and abdomen (this was a symptom before radiation) followed by a recurrence of major stabbing/burning type pain, with a feverish, sick feeling in my lower back, right side. These symptoms have not abated, and although they are well-managed with beautiful, clean, glorious opiates, when the pain breaks through it is terrifying.
The pain could mean that the tumor has grown, and is growing. OR it could mean that the tumor is shrinking and pulling away from healthy tissue, causing pain. OR it could be damage from the radiation itself.
At the same time, my tumor markers have plummeted, and are lower than they've been since this treatment began. This may or may not mean anything, but it's commonly taken to be a good sign.
And I've been feeling better, mentally and physically, than I have in five years. I am thinking in more organized ways than I have in a full twenty years. I am getting more done, work and creatively, than I have in five years, at least. Maybe ten. Yes, ten. I have a more positive attitude about myself and life than I have had in... a very long time. I believe in my own competence more than I expected to ever again. And I enjoy nearly every moment of the day, and I walk around in a noticeable good mood, lately.
But I'm scared, because this pivotal test may reveal some terribly challenging news. And I want more life.
So, I don't know. I really don't know. This is a seriously tricky disease.
I will get the results of today's test this Friday.
If ever there were a time for the "indescribable" mood indicator here, this would be it.
current mood: indescribable
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| Saturday, March 29th, 2008
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4:16 pm - outdoor exercise ideas around Capitol Hill?
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I need some new ideas for safe-ish places to walk alone, within walking distance of Capitol Hill, on these sunny days. Yeah, I know nothing's SAFE around this area, but I'd like to make an attempt at avoiding trouble spots. I find the parks a little depressing, because more "shiny happy people" are playing Frisbee and hanging out with their friends on weekends like this, but I'm just going to go do it, because at least I can walk fast and get some air and sun. I need a lot of therapeutic exercise, so I'm looking at places to walk vigorously over some distance. Even sick, I'm not a stroller. I can't do isolated woodsy parks, because I am by myself. I need some new destination that's not walking up and down Broadway, or downtown to shop.
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