they’re intricately connected with the occurrence of depression.

here’s a research paper:

Cytokines, stress and depressive illness: brain-immune interactions
by
Anisman H, Merali Z.
Institute of Neurosciences,
Carleton University and Institute of Mental Health Research,
Royal Ottawa Hospital, University of Ottawa, Canada.
hanisman@ccs.Carleton.ca
Ann Med 2003;35(1):2-11

ABSTRACT

Cytokines, signaling molecules of the immune system, have been implicated as a contributing factor for mood disorders such as depression. Several lines of evidence supporting this contention are briefly reviewed and caveats are introduced. Essentially, a relationship between cytokines and depression is based on the findings that: 1) proinflammatory cytokines (interleukin-1, interleukin-6, tumor necrosis factor-alpha) and bacterial endotoxins elicit sickness behaviors (e.g., fatigue, soporific effects) and symptoms of anxiety/depression that may be attenuated by chronic antidepressant treatment, 2) cytokines induce neuroendocrine and central neurotransmitter changes reminiscent of those implicated in depression, and these effects are exacerbated by stressors, 3) severe depressive illness is accompanied by signs of immune activation and by elevations of cytokine production or levels, and 4) immunotherapy, using interleukin-2 or interferon-alpha, promotes depressive symptoms that are attenuated by antidepressant treatment. It is argued that cytokine synthesis and release, elicited upon activation of the inflammatory response system, provoke neuroendocrine and brain neurotransmitter changes that are interpreted by the brain as being stressors, and contribute to the development of depression. Furthermore, such effects are subject to a sensitization effect so that a history of stressful experiences or cytokine activation augment the response to later challenges and hence the evolution of depression.

so, inflammatory response is bad when it’s chronic. see here.

and why am i going on about this? (here’s more.)

well, they’re saying that cancer produces depression as a side effect.  and depression feeds cancer (i need to find a reference). so it’s like falling into a black  hole when you let depression take you. that’s why people die right after hitting retirement age when they don’t have anything to do.

they’re not saying that depression causes cancer. that’d be something i would say.

i think i’ve been anxious all my life. i’ve just never realized it until now. everyone who knows me laughs out loud at that, because it’s apparent to everybody. but me. and i don’t mean to list it all now.

i’ve been waiting for these random aches and pains to resolve into a tumor i can feel, because then i’ll have been right all along, and something’s been wrong with me for years.

for a whole year i had symptoms of post traumatic stress syndrome because a tornado went thru my back yard. this distracted me from the anxiety i was feeling because i was taking several years too long to recover from surgery. this distracted me from worrying about getting a recurrence immediately and dying. and like i said it goes way back in my personality.

now i’m fine with the tornado. but that’s because swine flu started up on or about the anniversary of the tornado (which is the conspiracy trigger for me)

cuz i’m a swine flu believer. i’m a flublogist, a flubie, a complete catastrophist. yes sir, the flu is real and coming atcha, and i’ve been watching it like a hawk for over a month now. and it was only when i acted like i was going to die, out in the passenger seat with jim driving the other day, that i was extremely edgy and tense, way moreso than usual, actually hard to control.

i guess obsessing on swine flu isn’t really conducive to a meditative state.

and then there’s all the things coming up.

i’m busy getting my kid’s maltese pregnant so we can have babies. i’m going to mexico in july with one of jim’s kids’ family. the puppies come the beginning of august. my sister is visiting at the end of august. the puppies are ready to go in mid september. i’m going to ireland in october and jim and i are going to amsterdam from there in early november.

so of course i’m doing all this travel arranging, and gazing at maps, and looking up histories and wasting a whole lot of time, but at least i’m not obsessing about swine flu at the moment. i’ve actually given that up for the last couple of days to obsess on travel.

but in the back of my mind there’s always the great but.

the biggest but is that the mammogram and sonogram come back suspicious and we do a biopsy and then we take the other breast off and i have to fight to keep my lymph nodes. then 6 weeks of recovery sandwiched in with the rest of my hectic schedule.

no, what really happens is that all of those lovely plans get torn up and i begin another round of assault on my cancer.

unless, of course, the swine flu gets us all starting in august.

i went in; they squished my left breast. squished from the top and bottom, and then sideways.they offered me the two for one deal but i said no thanks.

it’s a conspiracy against the dignity of women very much like the conspiracy not to put pockets in women’s clothing.

don’t let me get started.

mammograms.

i was surprised to see a big screen monitor behind me when she released the machine’s grip on my left breast. it showed this lovely planet-like shadow with lines and fibers running all over it.

my breast.

i asked where i could get a copy of my film, and she didn’t understand what i was talking about because patients never ask for copies of their xrays, they go straight to PROFESSIONAL people for consideration and we’ll mail you a copy, well, we’ll mail your doctor a copy when we’re finished with the report.

i told her i was an artist. in fact i’ve been making paintings of planets lately, which are very breastlike, and seeing my own breast up there on the monitor excited me – you have no idea.

i’ve been drawn to painting planets, moons, round things in space. i’ve done four or five since the beginning of the year. and to me the semblance to breasts is inescapable, so i’ve been naming them accordingly: the great red nipple of jupiter; earth and moon, metaphor for breast cancer, things like that. but what better way to get the point across than by doing a picture on the same scale (4′x6′) of my xray?

how do i get a copy of my xray? she mumbled something vague. records, down the hall to the left and keep going.

so i went home. i can use one off the internet, or i can ask for several years ago’s xray and use that.

cool.

so anyway i’m sitting at home several days later when my medical person calls me and tells me to go in and do follow up things. i say okay and ask her to send me the results, so she does. you have to ask for these things. they won’t tell you anything unless you ask.

it says they’ve found mixed fatty fibroglandular breast tissue with predominant amount of fatty replacement, which sounds i don’t know normal to me.

then it says. there is a new, 7mm nodular density located 12 cm directly posterior to the nipple on the craniocaudal projection (the squeezing from top and bottom). this is not identified on teh oblique view. no suspicious microcalcifications are seen.

so i’m going to have to go in for 3 hours on june 5, several weeks from now.

i don’t feel anything special behind my nipple. on the other hand, i’ve been feeling phantom tumors for 5 years now that just happened not to be phantom a few times.

so who knows. and i’m not particularly worried about it. i’ve been feeling for many months that it’s only a matter of time before it’s back, so i’m kind of expecting, any day now, to be told they’ve confirmed a recurrence or a metastasis.

i’ve written before, i think, about how comforting it is to know the general details of how you’re going to die. okay, i could still get hit by a bus, and there’s always swine flu, but in general i can plan on being felled by cancer’s complications, or the complications of cancer treatment, which are not at all the same things.

maybe this is the start.

but i feel that with every twinge, which makes this time nothing special. just like having cancer is nothing special. dying is nothing special. living is nothing special.

so what’s the point?

that’s the point. i remember jumping up and down with my hand in the air yelling pick me pick me when they asked for volunteers to be born into a body.

that makes it all worth it, even the struggle, the pain, the agony, the loss, the death. even the death is worth it. death is definitely worth it, just for the parting lesson. i remember from last times.

but i won’t go there. most of you don’t want to hear my ramblings about my past lives. maybe in the novel i want to write – a fictionalized autobiography. i’ve started my notebook on it, who knows, if i get another five years, i may end up finishing it. it would be appropriately published posthumously, and then make a mint for my relatives and the abuse charity.

anyway, i’m alive for today. and for today i sat in front of the computer reading up on swine flu (i’m hooked, it’s all true, and it’s going to be a wicked ride), then went downstairs and painted on my planet venus painting, took the dogs for walks with jim, ate and sat reading on the porch while we have our first (unacknowledged – is everyone having conspiracies at the moment?) tropical storm swirl by.

i love my life.

hey, i’ve been spending every day preoccupied with my incipient brain tumor or that metastasized bone or liver cancer that i might could be growing. i worry that any minute now it’ll grow to the point of actually being diagnosable. of course i’ve got cancer, i’ve had cancer, you don’t get rid of it, it just goes into hiding until some other stressful event or wrong turn reactivates it and suddenly you’ve got 20 distant tumors.

this is what i live with.

i’m pretty anxious all the time. jim says it’s good, because anxiety and creativity go hand in hand. i just need to direct it. sublimate it. ride it.

but fuck that. we’ve got swine flu, so i’m not downstairs making paintings of planets, i’m up here reading up on the spread of the flu.

first off, its dna has been cobbled together out of two strains of human flu, two strains of pig flu, and a bird flu. nobody’s ever seen anything like this before.

outside of a lab.

outside of a lab.

the strains come from different continents, nobody’s got any immunity to it, and while authorities say that there are definite medicines that will handle the viri, people at ground zero are saying that the antivirals the government’s stockpiled aren’t working.

except that when they sequenced the virus dna, they discovered that it was all cobbled-together bits of swine flu, and no avian or human flu bits at all. the press is still reporting the original conspiracy-theory-promoting 3-headed monster story, however.

it’s going to be interesting to watch the dots on the map grow as the disease spreads.

it’s very interesting to be seeing this happen. the news channels give the news, but that’s the official line, and you can get that anywhere you look on the internet. what’s hard to come by is people who know what’s going on. insider information.

when you know all the pieces of a complex situation, you’re in a better position to figure out what’s going on for yourself, which means you’re no longer at the mercy of the official authorities. which is why i love the internet.

i have pluto prominent in my birthchart. this gives me a fascination with large scale events. i live for hurricane activity in the summer, i thrill at thunderstorms, and i’m still high from the tornado that went thru the back yard last spring. catastrophic change spellbinds me. if a meteor hit the earth this afternoon, i’d be outside staring up at it at the time.

so part of me is rooting for a pandemic. and i’m thinking of stocking up on canned and powdered milk because we’ve got the grandson in the house.

i’ve been expecting the first cases to show up in atlanta. we should have had something reported overnight. i’ll give it a few more days. it’s spreading mathematically in europe. i think the numbers will be downplayed. there’s a doctor in mexico city that says it’s vastly underreported, and in the hinterland they haven’t been reporting it.

to recap, i’ve been spending all my emotional energy worrying that i’m going to have a recurrence, an operation, chemo and radiation, and then another recurrence, and die. real soon now.

and here’s something new that could sweep thru here in another couple of weeks, and take us all, or take my girl, or jim, or the baby. so why am i worrying about someday getting cancer and dying, when i could be coming down with something and lose it all next week?

you know how we were all worried about herpes right before aids broke out, and after that herpes didn’t seem so important? i think i’ll go downstairs and paint now.

not that anything’s been going on with my health, i’ll hasten to assure you first. i keep going to doctors; they keep finding nothing wrong with me. the latest is a test for bone tumors. monitoring turns up nothing, but that’s a worrisome negative. what lurks beneath the surface, waiting for the trigger…

i’ve got an artist residency coming up, in seven months but i’m already planning and scheming. the blog of it is here.

my sister is coming for a couple of weeks and we’re going to rent a house on a soon-to-be-ex beach on the carolina coast. that’s in six months.

how much can happen in six months. i’m not posing that as a question, please let me make this clear. i would never do that. it’s like asking god, what else. which you would never do. inviting god to do his worst only gets you hurt.

but every plan i make has a hidden, unspoken thought, yes, if i’m in fit shape to enjoy it and not recovering from surgery or chemo; yes, if i’m still alive.

i leave it out of my discussions with jim and especially susie, who just worries. but it’s always a question.

it seems my great fatigue and accompanying diarrhea all started right after the tornado that went thru across the street from our back yard. i thought it was overwork preparing for my sister’s wedding, which was hectic. but it started before the wedding, while i was feverishly preparing for said wedding, it’s true. so i linked it to the wedding and laughed off teh tornado.

but i have every symptom of post traumatic syndrome, and it’s uncanny. it explains a lot. and i didn’t twig it until the first of the late winter/early spring southern storms that really whip the trees around. and my anxiety about going outside, and driving. and my dietary upsets.

does knowing this cure me? no it doesn’t. but i’m getting less fatigued, and my stool samples are rejected for not being watery enough, si i’m thinking of leaving off doctors for awhile and getting to work on things i’m doing artistically, like in my fabric blog, and preparing for a residency.

which is only kind of like tempting fate. it’s definitely sleeping dogs lie.

i’m applying for a grant from an organization that supports women artists with cancer. you might think that there would be many organizations supporting cancer patients. but alas, most grants are given to cancer research, which is a misnomer, because most of the grants go to encouraging women to take mamograms, which basically supports the cancer industry, not cancer victims. but so it goes. it’s always organizations that get money, rather than individuals who actually need the help.

this application requires an essay about how art has helped me deal with cancer. it’s a topic i have often thought about before, because actually having cancer has changed my attitude toward art. so i thought perhaps somebody might find this train of thought useful. here it is.

There is a link between art and healing. Making art stills and focuses the mind, channels the energies, gives an outlet for all sorts of emotions, positive and negative. In that way, I have used art to help me work thru the fears and anger associated with losing a breast and expecting to die early. If I hadn’t had my art to sustain me, I would have succumbed to depression and hopelessness in the first year following my diagnosis.

 

Internally, my art is a wonderful way of taking my mind off of my worries. Instead of focusing on every twinge of pain and fearing it means the cancer is coming back, I can ignore the twinges and throw myself into my work.

 

Externally, I frequently teach an art class at a community center, which lets me focus on encouraging others to use art to work on whatever problems they have. My classes are less about learning techniques and more about exploring human expression and bringing out the artist inside of everyone.

 

When I had a day job, putting all my effort into someone else’s goals in exchange for money, I was angry, depressed, self destructive. Now, by focusing on making art instead of making money, I have found wholeness, healing, a positive attitude, and the means to leave a tangible legacy, something that expresses who I am and what I have to say.

 

An aside: I found that writing about the specified topic was rather too easy. Everybody knows that art helps the healing process, gets you in touch with your unconscious, enables you to deal with the painful subjects everyone chooses to avoid. Suspicious that this was too trite and unthinking an answer, I changed the wording of the sentence around, and found a much richer topic.

 

How My Cancer Has Helped Me Deal With My Art

 

Before I got cancer, I made pretty pictures. Landscapes, still lives, interiors. I didn’t think I had anything to say. I didn’t think there was any rush. I didn’t think my art was important, since I never went to art school and didn’t have gallery representation other than a few gift shops. People at the art festivals where I sold my paintings liked my work, but what did they know? I had already dismissed myself as a dilettante.

 

However, once I got cancer, everything changed. I decided that making art was the most important thing I could do, sold all my things, and embarked upon a year and a half of art residencies, where I painted and wrote everything I had in me. I worked with all sorts of conflicts, emotions, new understandings and awakenings.

 

As I worked thru the process of grieving and getting on with what remained of my life, I found that my art became political. Suddenly I had plenty to say, about women, about cancer, about the cancer industry, about society, about the purpose and meaning of life. Being soon to die gave my thoughts urgency and importance. I began to envision simple and complex statements about having cancer, being a woman, being a mother and a daughter, being a human, about living and dying. It took me several years to work up the courage to make art about having cancer, but my feelings got stronger, and eventually the idea of making pretty pictures became irrelevant as the need to say something became overwhelming. Now I can hardly work fast enough to keep up with the art I plan to shove in peoples’ faces. I’m becoming a real pain in the ass. That’s a good goal for an artist who’s tired of painting pretty pictures.

 

I gave up a breast in my fight against cancer. Pressured to undergo reconstructive surgery, I found myself asking how I as an artist should handle it. Should I hide my scars and pretend that nothing ever happened? Should I paint pretty pictures of my life and never let on that I was suffering inside? My reaction was a very strong, instinctive unwillingness to disguise myself. I embarked on the sometimes excruciatingly embarrassing practice of going out in public with one breast, displaying my mutilation, inviting notice, asking for dialog, demanding that people not only accept me as I am, but feel the fears inside of themselves and acknowledge what they would prefer to ignore. In doing so, I have become a performance artist, displaying my deformity in order to shock people out of their comfortable, willful ignorance.

 

Having cancer, I find that my priorities have changed completely. If I’m going to die sooner rather than later, I see no reason to continue trading my energy and efforts for a paycheck, wasting my time and energy, and life, on someone else’s goals. Since time is short and my energy precious, I have focused all my effort to the important things – myself, my family, and my art. In doing so, I have become remarkably clear in my emotions, highly focused on life, and intent upon saying everything I’m uniquely qualified to say while there are people to hear it.

 

I thank you for asking the question. Our society gives us little opportunity to talk about the important things. Death embarrasses us, infirmity makes us uneasy, disease frightens us. In asking the question, you have given me an opportunity to think about things we have been encouraged not to think about, to focus on the purpose and meaning of my life, and to reflect on the statement that cancer has turned out to be the best thing that ever happened to me. This is a statement that flummoxes many friends. How can cancer be a good thing, they wonder, do I have a death wish? But no, I have a life wish. Because I have cancer, I no longer waste my time. I no longer enjoy the luxury of depression and lassitude. I no longer tolerate toxic people, emotions, situations. I have faced death, accepted it, and become ruthless in doing what is best for me. If I’d never gotten cancer, I’d still be wasting my time. As it is, I enjoy every day for itself, I work at my art constantly, and I love myself and my family with a tenderness I had no time for when I was focused on how far short my life came of my dreams of perfection.

 

I live to make art, and make art to live.

i’ve decided on my next piece. a couple of friends saw what i’d already done and loved it. i hadn’t expected them to love it at all. i expected them to be embarrassed for me. what do i know.

so, my next piece is going to be as unconventional as the last one. it’s going to be in layers.

i’m seeing a 2 ft by 4 ft canvas, upright. on the canvas i’m going to paint an anatomy picture, what doctors see when they cut you open.

i don’t know whether i’m going to show diseased organs or not, but if i can riddle her with cancer that will be my goal. what does cancer look like on the surface of your intestines, or on your stomach or liver? i wonder.

i got jim to buy me a towel holder at the hardware store. you know, the kind that have 3 rods that swing so you can hold multiple towels. it screws into some wooden surface, possibly under your sink on the cabinet door. i’m going to afix this to the top of the canvas so that the next steps can be suspended above the canvas.

on these rods i am going to put 3 pieces of silk, the same size as the canvas or maybe a little smaller. on the bottom one i’m going to put the closed up body of a woman, with stitches and scars and missing body parts. bruises, swelling. it’s going to be very ugly.

on the middle silk i’m going to start assembling the woman’s clothes. the underclothes won’t be the usual frilly lacy panties, but it’ll be a colostomy bag, fake breasts, all the artificial bits and pieces women have to wear to be accepted as women in society.

on the top silk i’m going to paint the woman in full drag, looking like a normal woman, all her disfigurement disguised.

this is going to be a painting about layers. layers of truth revealed, layers of lies, layers of pretence and the things women do for acceptance. i hope it will be disturbing.

i didn’t put anything down for january because i ordered my daybook later. but starting februaryof 2008, here is a tally of my medical to-dos…

feb 1: mammogram.

march 6: oncologist checkup. she seems satisfied to know that i’m not dying right now.

march 14: a tornado rips thru our backyard. i watch until i’m too frightened, then grab the grandkid and head for the bathroom while jim is being drawn to the window. and then it passes. i think nothing of it for awhile.

march 20: a visit to my nurse practitioner. i’d been having diarrhea for a few weeks. i attributed it to overwork, as i’d been doing a lot of unnecessary work for my sister’s wedding in late march, and was tired and fatigued.

during april i recovered from my sisters wedding and didn’t schedule anything. i was having problems with greeat fatigue and diarrhea. i had applied for disability because i could no longer work. i felt like i was fading away.

april 21: i saw my nurse practitioner for a gameplan. we decided to see a gastro guy for my diarrhea, and a cardiologist to get an angiogram in case my dad’s ascending aortic aneurysm had passed down to me.  

april 22: an interview with social security over the phone. i told them how tired i was, and the woman was sympathetic but noncomittal. she kept saying is that all.

may 23: went and saw the cardiologist. they did a sonogram of my heart and said it was larger than it should be, and that i needed an angiogram, and scheduled me for that.

june 3: back to the cardiologist. he forgot why he’d told me to come back, had to go review my files. lots of waiting. he blamed his nurses for not scheduling me for the mra.

i was supposed to go get my eyes examined to rule out aneurysm. but i never went. they look at your fundus and see broken capillaries or something.

june 6: my nurse practitioner set up an appointment with a gastroenterologist, someone else in an office i’d been to before. so i called up and changed the appointment so i could see the doctor i had visited previously, a real sweetheart.

june 9: saw my oncologist again. i wasn’t supposed to see her until august, but i had developed a rash at the site of my surgery scar. it had gotten hot out, and we don’t use air conditioning, so it seems i was developing heat rash around the scar, and nothing more. sure had me going for awhile, tho.

june 12: the gastroenterologist. just as wonderful as i’d remembered. he listened to what was wrong and ordered both a colonoscopy and an endoscopy for later on.

june 16: saw my nurse practitioner, don’t remember why, but in order to go see anybody  i need to have a referral from her, so i go to her when setting up anything at all. i believe i remember her asking me what i wanted her to do, after hearing my continuing complaints. i outlined all the people  i would have to see and all the tests i thought should be run, she nodded, and started referring me. i was still waiting to be denied benefits at this point, and could hardly walk with the heaviness in my legs.

june 21: saw the social security doctor who listened to me, nodded, and asked a few questions. i told him about the rash and he had a look and said hmmm.

june 24: went thru a lot of red tape to go see my former surgeon, who my new insurance does not have a contract with. we were scheduled to do a biopsy of the rash. but it had faded. it had faded last month, as well. this was alarming to me because it indicated that it was fluctuating with the moon, and my cancer had done the same thing, getting big before i bled, getting small again, almost going away, in the midstof my cycle. the rash was doing something similar. i still hadn’t quite connected it with heat spells, because in this part of the world it’s usually hot after may. just not unbearable like it gets in august.

june 26: back to the cardiologist. we’d had a cat angiogram and he told me my heart was within normal limits, but on the large end of that. he said we’d have to have a cat scan every six months to watch it. i asked if he knew how much radiation he was talking about, and he said we can do a transesophageal echocardiograph, but it would take sedation and did i really want to deal with that. it’s a serious question. both have their bad points.

july 10: went for my anal probe, also my deep throat test. when i came out of the anesthesia the doctor said i had gastritis, and diverticuli, and that he could see no reason for the fatigue or the diarrhea, and that we would have to do more tests. he arranged for a cat scan of the pelvis and abdomen.

july 15: after no food for a day and this truly awful barium sulfate smoothie, they gave me a cat scan, a very annoying procedure. at this point i was at the height of my fatigue, and couldn’t go down the hall without having to rest. i was very put out that i had to get dressed, travel 20 miles, and sit in waiting rooms, never mind the evil shit they made me drink, and the loudness of the radiation donut. grr. the cat scan revealed nothing to the point, but showed that my spine is degenerating with age and that i have fibroids in my uterus, most likely due to the tamoxifen.

july 22: went for my mra, to rule out aneurysm. this was louder and more noisy than the cat scan, more disturbing, and more tiring. they used a contrast agent that has since been linked to cancer. they didn’t find out anything new with this test. either.

sept 11: my oncologist. i wanted to talk to her about protein and albumen in my blood, markers for something. she was her usual impassive self.

sept 29: my nurse practitioner. we discussed my case. she asked me to call for followups with the gastro and the cardio guys, and to ask them to explain the test results they’d sent to her. things to ask about: ibs, chrone’s disease, insulin resistance, the aberrant subclavicular artery that was discussed in the mra report. she said the best thing for me to do would be to go thru this one hospital system so all these findings could be documented. she recommended i see a psychiatrist as well, because at this point i was too depressed to deal with anything. i had been turned down by social security, for the reason that they couldn’t see where i was disabled. this threw me into a tailspin. what was i supposed to do, crawl off under a bush and die?

october 6: i went to the lab for blood and stool work. a large workup, many vials of blood and tupperware containers of poop. again, nothing.

october 22: went back to the gastro guy, who was  stumped. nothing nothing nothing, let’s send me for more stool tests. we’ll look for really obscure things this time.

october 24: my oncologist. stolid and silent as usual. she seemed amused that i was trying to get disability. they usually fill out that form when they’re alot more along than me. well, shoot me if i think i have a problem, when obviously i just need to get off my fat ass and do something.

october 31: the cardiologist. a review of the mra. he was very dismissive of my questions. obviously there’s nothing wrong with an aberrant subclavicular artery. it’s just not where they expected it, that’s all. oh. is he being arrogant, or am i worrying about nothing? i always talk to the nurses and secretaries. they’re pissed at him because he doesn’t complete his paperwork. maybe i need to rethink this. being in the clutches of doctors isn’t good for your health.

november 10: went to the large urban hospital that is rated number one in the southeast for trauma. like my nurse practitioner advised. waited for several hours in a clinic waiting room, read a good deal of my book and listened with much amusement to conversations all around me, many not in a language i could follow. i saw a snot-nosed doctor, i mean 3rd year resident, who had to dash out to ask what he should do, a slightly older supervisor came back with him and looked at my hands, which i had said were very painful. since they didn’t look like eagle’s claws, they decided it was nothing, and refered me to the hospital’s 13th floor, which is where they had their psych ward. a scary place, where you need a pass from a nurse in order to leave. i decided i did not want my fate left in the hands of residents. i’d had enough of them when i first had cancer. they’re the last place you want to go when you have something complicated wrong with you. they don’t have a clue what they’re doing, and are full of arrogance and dash.

around this time, it began to occur to me that the tornado had left me scarred. i had become afraid to drive, more afraid to be a passenger, starting at the slightest noise, viscerally disturbed when the wind got high. poor sleeping, loosing weight, digestive problems, memory loss, all these symptoms i’d been having were covered under post traumatic stress disorder. but this suspicion isn’t really testable, just locatable. and knowing doesn’t reall yhelp. these are fight or flight reactions i keep having, and once they’re triggered, i can only watch myself freak out but can’t do much to curb it.

december 15: a trip to the gastro. no results with that bunch of tests, let’s do more. stool samples, looking for electrolytes. he thinks perhaps i have lactose intolerance and advises refraining from all milk for 3 days. this has mixed results. if i can’t have milk, i won’t drink coffee, and my bowels shrivelled up and produce nothing for the three days. except that was back to normal slush on the 4th day, the day i ended the test. a mere 20 minutes after i drank my first cup of coffee with lovely moo.

december 17: my nurse practitioner. testing my a1c levels to see if i’m insulin resistant, since i have many of the symptoms of someone who is developing diabetes but does not have it yet. she tells me that even tho i tested negative for celiac, i should try wheat elimination because some people have mutations that don’t show up in the blood and stool tests.  of course i would be one of those. of course.

december 22: a different oncologist, one who specialized in hematology. the cardiologist thought i should have her look at my blood work to see if there was anything funny. there wasn’t. this was a pack-em-in-before-the-holiday-vacation appointment, where i saw in the waiting room for 2 hours, with all the chemo patients, and then sat for another hour in her office awaiting the consult, and an other hour between interviews with her while she slipped out to check on something. i was also supposed to go for a lung function test, but my old pulmonary doctor no longer takes my insurance.  he’s investigating my shortness of breath and fatigue.

december 31: i was sent by my nurse practitioner to get an mri to see what was wrong with my back, but they called to cancel it because the insurance said no. they weren’t going to authorize an mri because i hadn’t been hospitalized and wasn’t using drugs other than aspirin to treat it. okay. i don’t need an mri. she told me to come in for another blood test, an alkaline phosphatase test, to see if there was in fact anything to worry about, or if it were all in my head, where i can deal with it better than they can. i got in the mail that day an official denial of the mri from my medicaid, and with it was a form requesting continuation of services. as ifthey might think of discontinuing services because i’d asked for one thing to many. this sent me into a freewheeling spiral of anxiety.

and the new year begins. may it be an altogether better year than last year. in all the ways that count.

so we leave the year here, with a total of 32 doctor visits recorded in my day book. i think i remember that number right. you count it if you want. the upshot of almost a visit a week was a bunch of tests that revealed nothing, a large donation to the health system of this country, a situation that has somewhat improved just by letting time work at it, and a new understanding and respect for the power, wisdom, and expertise of doctors.

i’ve just started on my second encaustic painting. now that xmas is over and i finished making most of my presents, i’m doing something interesting that jim and i have just picked up. we’ve discovered a mutual interest in encaustic painting, or painting with melted crayons.

so over on my faabric blog i’m writing a lot these days, and not so much here.

however, i am compiling a list of doctor things i did this year, thinking perhaps i’ve made some kind of record for me. and since i suffer from white coat syndrome, and run a fever every time i enter a doctor’s office, i think it’s medically significant. i’ll try to publish that report before the new year starts another round of giving back to the health system.

so go follow my painting trials and tribulations and don’t expect any whining from me for awhile.

jim thought i might could name it “the reign of condescension.”

i was thinking “crap i’ve heard come out of the mouths of doctors.”

one of them even patted me on the head as he said his piece.

asshole.

unfortunately you can’t read what i’ve written. should have made the words bigger. as it is it felt like writing 50 times on the blackboard. (did any of us dare write that crooked when we were punished like that?)

pardon me while i crop and upload a detail.

for this one i got up on the bed and had jim take pictures of me squinting at the ceiling like i used to do as a child. maybe i’ll upload that one as well. 

 i used to squint because i was always nearsighted, but nobody noticed, not my mom, not my teachers. i squinted my face up like i was scowling at the world, whenever i was out in the sun, whenever i tried to look at the blackboard. i even voluntarily sat in the front of the class, well the second row, because i don’t just see fuzzy, nosir, i see clear. i just see fractured multiples of every object, superimposed on itself. i suppose this is called astigmatism, but nobody can confirm this for me, so i just figure it’s me.

so i wanted to show a very small me crouching at the bottom of a long canvas, a long white space, aseptic, barren, cold, as bland and blank as possible. and then i wanted bars, imprisonment, but that was too obvious. and what’s my point about cancer being a prison? so never mind the bars. but maybe if i did them in blood. oh stop.

i wanted a frightened naked woman with scars and ugliness, haglike qualities i cultivate now that i’m over 50.

i wanted her alone and small and miserable (dorothy the small and meek).

i wanted her battered down, assaulted, by all the useless crap they tell you when you’re trying to navigate the maze of your own disease.

i should have made the words bigger.

there’s me, that’s my scar, my pendulous breast, my sticky-out belly. i love me.

i felt a lot of confusion when i was dealing with doctors, at the beginning of my progression with cancer. i tried to paint this once before, and it never got off the sketch paper. but i’ve been thinking about it for 5 or 6 years now, how long am i alive past the onset of this?

at the beginning, i was trying to listen to the little voice. since i gave myself cancer by asking god to take me home now, after 9/11 and our wild west response. since i gave myself cancer, i knew that this was not your normal case of cancer, that is, well, what am i trying to say here?

i had been trying to acknowledge the little voice since i started getting my wishes. i would get what i wished for, 6 months after i’d wished it, several months after i’d changed my mind and wished for something different, which then went into the pipeline.

the little voice always advised me well, but i never paid it any heed, and forgot it had even spoken while i went on my headstrong way.

the only notice i paid the little voice was when i’d pause in my deliberations for a moment while thinking a different thought, and then shake my head and go, “nah.”

the “nah” was the only memory i would retain of the conversation.

and that’s why i was trying to listen to the little voice.

this is when i was deciding what to do about the tumor. get it out was the first response, of course. but then what?

so i consulted the little voice whenever i had a decision to make. i went on my gut feeling. if a doctor gave me the creeps and treated my concerns in an offhand manor, my little voice started throwing him insults and generally misbehaving.

the little voice yelled and screamed when this one guy tried to simplly slot me into his chemo shedule without considering which chemo or what dose. it was a one-size-fits-all operation, and i’d done enough research to know that there were lots of options and he was being lazy. or that’s what my little voice was telling me.

previously i’d have sat there and let him shovel shit around my feet and stamp it down, thinking he must know what’s best. but my little voice wouldn’t let me.

what i wanted was for someone to tell me what to do. i wanted to believe in the platitudes and admonitions, i wanted to think someone had my fate in their hands and would treat me gently.

but that’s not what modern medicine is all about. if i trust in what the doctor tells me, i become fodder for some drug company experiment. it’s not in my best interests. it’s in the cancer industry’s best interests. it’s in the doctor’s best interests. they can help me, but look around – they help me to die of cancer.

so there i was, knowing this, knowing that i had to stand up for myself.  against the powerful, authoritarian medical industry. being assaulted by the other vested interests, the wheels of whatever.

i feel like i’m a cow being herded thru the chute onto the slaughter floor. i’ve got account numbers at a dozen hospitals and doctors’ offices. i help the system go around. i am worth hundreds of thousands of dollars a year to all these institutions just to check me out to make sure i don’t have a recurrence (using diagnostic techniques that promote the growth of what ails me).

so i’m trying to convey some of the confusion, revulsion and panic i felt dealing with being a cog in a wheel that would end up with my death.

you’re not supposed to cooperate with your own punishment.

i know your parents tell you that you need to. stand there and let me spank you. i’ll make you sorry you were ever born. stop wiggling, you’re going to take this like a man.

but what kind of true rebel stands there and takes their lumps? defiant to the end. attitude. never give up, never surrender.

yeah.