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So I made it through brain surgery with flying colors; back home and sitting on my sofa next to Chris inside 26 hours. Healing, rebound wise, functionality: all I did very well on. I seemed to not have acquired any new major losses. What I have developed, ‘I think’ as a result of the removal, is a worsening of the basic areas of complaint, to a minor degree.
I type more typos, hit speech glitches, and have seen real noticeable loss of use in that right tumor side—most markedly the hand and arm. Weakness exists that didn’t quite on the right leg, but it’s barely blipping on the radar. Minor balance issues creep up; visual glitches hit. I am having spontaneous pee fun, headaches, and nausea—those three are most likely related to swelling. I mean they did cut a chunk outtalk my brain here kids. I expect it to be a bit pissed off.
The typos are glaring—word rearranging, letter substitution; since we did not operate on technically the ‘language’ center for the most part, I have to think swelling, edema, and the already existing tumor growth are all behind this issue.
When I cough, my right arm springs to life as a marionette, jerking in spasms upwardly. And with the never ending flu stat sprung up as soon as I had brain surgery in this home, I am doing plenty of coughing. In fact at first, it was a real trip, as an entire section of my skull and brain would pop outwards with a cough.
That’s resolved now.
The arm and hand use was going to hell real fast pre-surgery. The hope is that this debulking will buy some time, and a wedge on treatment.
I came out of surgery on 40mg Decadron—yes, the Devil Dex, my arch enemy. I’ve spent the last 3 weeks in taper hell, feeding the endless hunger, swelling to the point where my cheeks block some of my vision, feeling the bones in my body seem to crush into powder, and basically fighting off the hounds of hell to get off the damn steroids.
And as of this writing, I am 72 hrs since the last Dex dose, and I ain’t looking back (caveat: unless my brain threatens to explode). Yes, I am still dealing with some issues that will ultimately decide how things are really going—like that spontaneous urination and the pounding skull—but I am hopeful that yet again, I have left the Devil in the dust.
Although it’s going to take me a while to lose this corndog inspired weight.
Surgery notes: They took more of Casper that they had thought could be safely taken in the past. They were using some new and manifold mapping techniques in the OR. That’s why, or part of why, I went for the resection. However, when they got into it, the mapping failed. The surgery notes say “we continued with an aggressive resection anyway”. Well now—hey Dr.: maybe ask a patient next time. Personally, I didn’t have the need for taking such extreme risks to remove that section of tumor, or get a larger sample. The resection was subtotal—partial—regardless. Don’t get me wrong: it all turned out pretty well (‘cept the more dead hand and arm that just did a jig for me when I sneezed), but still….
Still getting things set up with the doctors here. Jefferson has been disorganized thus far, a mess, really. The left hand knows not the right does. But what I seek isn’t typical; it’s the exact NO that will lead my case, Jon Glass. And as soon as I manage to get contact of a more secure type through with him we will shape and start treatment.
It will be an individual cocktail. I have declined on radiation treatments again at this time. Pathology remains questionable. And I should have a goddamn report by now
I wish I could access Novocure, but unless someone has $10,000 a month and a crash pad in Switzerland… well, you know…
I did have 3 very interesting and different seizures in the days following the surgery, I should mention. Since then, knock on wood, none. I half expect a seizure in the next few days as my body finishes getting used to life without Decadron. I have a visit with an Epileptologist and an EEG coming soon, to map out and get an idea of where the seizure issues stand today, and how best to treat them.
Things are bound to be different:
Like the bomb that changed the lunar landscape forever, there for the grace of god goes my brain. The sucker is different, has a big chunk gone from it, never to be the same again. It’s a real trip when you think on it. What the hell was that big missing chunk doing, anyhow, if it could be removed with so little change?
So, I should have made contact with you all before now, and this relates to my final concern. I have a concern, brain wise that I hope is just a recovery from brain surgery/shock/flu/rest/stress issue: I lack desire to create. I have no urge to write, no push to paint, no desperate needy seeking searching wanting. My ambitions of the soul seem dried up and shriveled.
And what scares me most: I am only feeling sad about the lack, concerned about the loss, in abstract. Unfinished works, unstarted paintings, unopened paints, lay about my room. Sketches never revisited; ideas never reworked.
And these words, to you, are the first that I have written.
A funny side note: spell check just had a party and a half correcting document!
NP
… And Other Tales
Brain surgery: 5:30 am, Thursday the 24th of September, 2009. You are all cordially invited, BYOB (brains or beer, Erica): Be there or be square!
There’s a nice Dr Andrews at Jefferson Hospital here in Philly, who shall attempt to remove the main old original part of Casper—the “golf ball” section, older readers may know it as. This part of the tumor appears to have moved brain tissue aside to grow, instead of quite digging into it. Of course, we heard this before. We heard it at diagnosis, when we were told they’d just scoop that sucker out with an ice cream scooper. 4 needle pokes and the loss of most use in one arm later, they said: "Naw, that’s what we call an inoperable tumor.”
First, this chunk o tumor at present represents about ¼ to 1/3 of the whole tumor these days. The areas of new growth since diagnosis—and especially most recently—are diffuse, meaning infiltrated among healthy tissue to such a degree that surgical removal would be impossible. Then add to that the fact that all of that area is generally inoperable regardless, due to the dangers involved—the corpus, thalamus, etc, etc, etc.
But boy, lemme tell ya: this is one big bad motherfucker of a tumor on scans.
Part of why they feel that the brain functions have been pushed aside is because they think I should not have all the uses and abilities I have at present, –have had pretty much, in decent shape (barring the arm/hand), all along.
Now I’ve been around a bit in this medicine-go-round. I have consulted with all the best. I have had scan reviews galore. The best options given me regarding surgery in the past were an offer from Duke of a larger biopsy that the first if re-pathology or further info for treatment matching would be in my best interests (always weighing the risks vs. benefits). The same Dr. also offered a subtotal resection, should the time come that I simply must reduce the tumor burden to keep some type of quality of life, and to stay alive.
And that’s where we are. At present, symptoms are growing daily, seizures yet again on the rise. To stay alive, to keep any quality of life, I must take risks that greater than ever before. The tumor will kill me, and pretty damn quickly, if I do not act. The symptoms will only worsen, each becoming permanent, brain damaged more and more, if I do nothing. Morbidity will fast become a real issue, even barring me from trials or treatments, should I sit on my ass and let this tumor chew my brain to bits.
Now, don’t get me wrong: I can live with the state I am in. I can live with the seizures; if I knew they stay at an even keel and not progress, I could live with the symptoms.
Even as I sleep half my days (actually, more) away, seize in variety styles through those days, lose feeling down my right side, in my mouth, tongue, face. As I lose more and more strength and use on the right side. Even as I stumble into walls and bash against them with visual glitches and major balance problems. Hell, I can even live with the level that my speech skills have deteriorated to: mush mouth, mush brain—thinking of words, arranging a sentence, trying to speak it, and more.
But what both symptoms and seizures imply, in reality, is a very ugly picture compared to “how well I look”. You can’t judge this book by its cover.
So, we start with surgery, then. Part of the plan being that reducing the tumor burden will leave less to treat afterwards with lovelies such as radiation, chemotherapy, or it just may give me enough time to find a trial.
Mind you, I have dug the entire world through for a trial, and I do mean the entire world. And there is nothing I can access, out of what little trials are still getting funds. BUT:
The Society of Neuro-Oncology has its annual meet in New Orleans this year, at the end of October. And I WILL be there, as a rep with others, for the Grey Ribbon Crusade. This is one of those dr to dr conferences, a big one, and often unveiling of new research and new trials occurs there. Also, the fiscal year, and with it, grants and funds and approvals and the like starts up about now, but doesn’t hit the workshop with cash until around that time or later. Ever the optimist, I like to hope that there will be a promising trial I can access that may come out of the event.
Now it is extremely likely that I will start radiation of some type, as I simply must act that aggressively at any cost, but my hope is to find a trial that uses it with other study items, preferably HPV style trials, that would help build on the GMO work Dr. Okada spent the last year creating.
And if nothing pans out, I was able to network with some doctors, as well as help further the face and presence and voice of the brain tumor community and, hell: I spent my birthday in New Orleans, because you know that I will stay a little longer than the conference to enjoy a taste of the Big Easy. Not a bad combo deal, you must admit.
So amusing tales from recent days: I peed all over the best scanning machine I have ever been in. A 3-tesla magnet MRI machine, set for me to do functional pre op mapping of the brain in the hopes that I don’t get fucked up (a risk, seeing as how some still feel it’s a very bad idea to have surgery, still consider it all inoperable, and well, we all remember history. Don’t we?). The amazing detailed images this bugger gives are fabulous. I can’t pretend to know how to understand some of the scans they took, as it’s a research machine and some I am just clueless on, but what I can read and understand, wow—I am very impressed, and slightly unsettled. Nothing like seeing even deeper infiltration and specific areas of growth of your brain eating tumor to give the belly that oogey free-falling feeling.
But I had to pee, see, bad. And they had this little video playing in the machine for you to chill out to, and watch, and damned if they weren’t travel videos on the wonders of various rivers! Finally I could bear it no longer (and was already concerned, knowing that I have the symptoms of urgent urination and sudden spontaneous urination), and kicked my legs and yelled “let me out now!”
I nearly broke that fancy machine trying to escape, but it mattered not: I still peed all over the bugger. Good thing this girl had a back up pair of sweats to bring along!
Seizures: now a fascinating thing here. I have had seizures in many locations by now, parks, grocers, sidewalks, even had one in the waiting room at UPMC Pittsburgh, where the nurse freaked out and made me leave the room and wanted me to go to the ER—which is just silly for a basic usual motor seizure that are my ‘regulars’ and over in under 5 minutes. But at Jefferson University Hospital, I have found the only location on earth where one can seize invisibly.
The first seizure there was almost a week ago, on the waiting room floor for the neuro clinics. The employees not only ignored me instead of freaking out, they stepped over me as though I wasn’t there and it was a regular occurrence. I am not using exaggeration to make a point here—she literally stepped over me. Actually I had to ask to her to move first so I could lay down, then she got Chris to sign some papers, and then she stepped over me. Wow. Hey, maybe it is for them?
A day from hell Thursday was spent in pre op clearance, that functional MRI, labs, x-rays—everything, really. I seized in the first waiting room, and I swear no one even saw, except maybe the lady who seemed bored watching TV. Then, at the end of the day, seizure #2 hit, again on the waiting room floor (different waiting rooms), and while one patient was a little worried and asked if she could help, the employees seemed to not even notice that some pinkish-blondish-reddish haired woman was on their floor doing a mild arm and head fish flop.
Mind you, there’s more details, more stories to share, more specifics that could be in this entry, but with my lapses in posting, hell, it’d be a novel by now. Like I still smell pee many times a day from the smell seizures, that I am having a new type of seizure ‘spread’, added to the fact that at this point, daily I can feel my symptoms insidiously grow worse, take more and more from me. Casper is the thief.
So at any rate, that’s where we are at present: Brain surgery this week. Grab up them dice, blow on ’em, and just toss, baby. That’s the best I can do from my end at present. But Dr. Andrews, the rest is on you. Upside: the surgery may reduce or remove ‘some’ symptoms, and will likely back others down just by reducing pressure in the noggin, and hopefully will buy me time in an overall sense. Maybe not much, perhaps only give me a slightly smaller target to treat with the rest of the arsenal, but at this point it’s a risk I am taking. Since this may affect language greatly, it may be a while before I can post again, so if anything goes awry, I will have Chris post an update here.
So I am just climbing into a little Zen; gonna spend time with the family until Thursday, and just… leap.
See you all on the other side.
NP
This is one of those updates I hate to write.
First, the upper part: my gorgeous little baby girl turned 17 on July 8th. Holy crap! Who let my baby grow up??? We are considering grounding her for ten years or so, before she tries to move out on us.
We started the day at 2:30 am, driving out of Philly, leaving mom and Zachary here to fend for themselves. By ten am, I was in Pittsburgh, sliding into UPMC’s fancy trial T-3 MRI machine. After that we chased down the Boston Market chicken pot pie that my darling girl had been craving and begged for. Then we checked into the room, hit the pool and hot tub, swung by the room for a seizure, headed out to the mall to let her pick her present, and ended the evening in a full on no holds barred pig out at Outback Steakhouse—another craving the girl had: Outback’s ribs.
Other than the seizure, and having to be in Pittsburgh for emergency scans and evals, a great time was had. My girl is so easy going that as she always says, “It’s all good.” And it was real good.
On the medical front:
First, the motor seizures are seeming to finally come under some control. The last seizure was in Pittsburgh, on July 8th, after my silly head decided it sounded like a good idea to sit in a hot tub for a bit. With my history of bath and shower triggered seizures, I was a bit nervous, mind you. No one left me alone, I was cautious; everyone kept an eye on me. I safely made it back to the hotel room. I dressed, I applied make up. I was ready for us to hit the mall and the feed bag… when whammo: on came another motor seizure, starting in that bogus right hand/arm. It had been 4 glorious days since the prior seizure.
Meanwhile, a little back story here:
Over the 4th of July weekend, I noticed that the house, the neighborhood, had the distinct odor of human urine. Now normally my sense of smell is acute, so when the family didn’t also smell it wafting on the breeze I assumed not that it was neurological, but that they just didn’t smell as well as I—ever the ego beast, eh?
But you know, the scent followed me into Pittsburgh, it continued through sterile halls and empty rooms. It overcame antiseptic odors normally found in a hospital. So I hit the staff up, asking if they could smell it too. Each said no, they did not. So then I worried that I was what reeked of pee. I made those poor people smell my arms, my clothes, my hair, and got another negative response—at least I wasn’t the root of the evil smell. The odor was very strong for me, coming and going as if on a breeze. And then came the realization that this was likely neurological.
But, not wanting to deal with that quite yet, I first turned to everyone I knew asking if there was any shrub or plant that carried such a smell of urine, that I could blame it on, even as I knew that it still wouldn’t explain my smelling this in sterile environs. I got some great responses back, but in reality, it was all in my head:
What this is is an uncinate seizure, a seizure of scent, originating from the uncus, in the medial part of the temporal lobe, on the right side. So what we have here are two different seizures, coming from basically two different brain areas: motor seizures that start in that bogus right hand and originating from the left sided brain motor strip which is pretty much all tumor, and ‘smelly’ seizures, coming from the right-sided brain area mentioned.
Now to slow down a step here to let that soak in….
A pet/ct scan was done on Thursday night, the 9th, and on Friday am we met with Dr. Okada for neuro exam and consult, and get the results of those scans. Me being me, I had already gotten a copy of the MRI and viewed it. And I didn’t like what I saw.
Casper the tumor is on the move. The smelly bastard (his newest nickname while the odor of urine still floats on the breezes in my brain) has gone from a left sided lesion, grown into the corpus, filled that sucker up, the lateral ventricles, 3rd ventricle, and definitely involving the thalamus more markedly, the basal ganglia, and infiltrated the right side of my brain, in the motor cortex there. I have what looked like just a little bigger than a penny sized area on the right brain now cancer/tumor also.
Generally, this falls into the category of a ‘Butterfly Glioma’ tumor, due to the appearance on scans, with the corpus being the body, and the two brain halves with tumor being the wings. But the right sided involvement is still small, and Dr. Okada said he didn’t want to call it a butterfly because as he said “that scares me” (it should be noted that it scares me too).
Butterfly gliomas are usually GBM, the tumor is already looking suspiciously like a GBM; they are generally very difficult to treat—can’t cut em out, can’t radiate, can’t access many things that I would prefer, option wise. So I’m calling it a cocoon, for Dr. Okada. There are grade 3 or 4 Oligodendrogliomas that are butterfly gliomas, albeit a bit rarer, so I’m keeping that in mind for us both.
This technically is recurrence #2 for me, by the way. God knows I’ve pushed my luck a long way, and somehow I’ll push it even further. Just don’t know how yet. I’ve passed due dates already, I’ll try to pass the latest prognosis schmognosis. Not that I was told one, with this recurrence, nope, but let’s just say some days I wish I didn’t know as much as I do.
The option was left open for me to stay in the trial or not. The amount of growth on the scans is not clinical progression as usually measured when in a trial or even outside of them—meaning the growth rate from the last MRI to this is less that 25% increase. There are many little details the doctor shared about the scans that he didn’t have to. His integrity is high, ethics outstanding, and he genuinely wants his patients to have the best care, options, and info that they can get. That’s very rare. Another doctor would have been likely to keep me on the trial for a while longer just to keep his results looking better.
So, I will continue with the poly shots, technically still in the trial, chase down options, redo surgical opinions (not likely, but always worth a look again), chase down far flung trials and compassionate exemption items, and try to formulate a game plan. We will MRI again at the end of August, and review all films past and that one, to try to get a handle on the growth rate, and hopefully help me make some decisions. How aggressive I must be will depend greatly on this type of info. I may look at re-biopsy. I just don’t know yet: it’s digging time again.
Pretty soon it’s going to be easier to list the parts of the brain not involved than those that are cancer-fied!
And a note about the trial I am likely leaving in two months:
I will never regret joining it. It gave me the first shrinkage I ever had. It gave me an incredible quality of life for the last year–I mean truly GOOD. Worst case scenario, the growth rate was slowed further beyond the shrinkage that occurred. It has just stopped working for me, as every treatment eventually will until a cure is found. There are patients further out than me, who started in more dire straits, who are still seeing success. Responses to any treatment are so hugely individual that there is more guessed art than science half the time in this field.
I am wide open to other trials having done this–and early studies are showing patients having been in immune vaccine trials are seeming to respond even better to other treatments.
What I have gotten that is good from this trial has been completely worth every moment. I was screwed walking in, so this time of respite and reaction and QOL has been amazing
I will keep everyone posted as I dig into options.
To be honest, while this is extremely disenheartening, it didn’t come as a huge surprise: with the newer symptoms, the sudden increase in seizures, and the general funkiness, we had a feeling all was not well in the Niki machine. Balance has been an issue, some minor memory glitches, face tingles, rarer double vision, coordination problems, depth perception, increased headaches, so nausea and vomiting… it’s a long list, and none of it extreme enough to stop me living well yet, just a whole pile of small annoyances that aren’t great on morale; just enough to keep reminding me I have a brain sucker in there.
But, as a last note, I’ve got some living to do—and I don’t mean ‘staying alive’. I mean living, experiencing, not in a hell with very low odds of any success. My eyes stay on that ball and set that bar.
NP
Well, kids, we have a new word for you all: Depakote. And if I stick you on this med you are not likely to give a crap about the condescending tone of voice I am opening this update with. No, you shall not care, because if you keep the train of thought long enough, and if you really still even care a drop by the time you have mustered what outrage you can dig up, it will still be naptime by then, and so we’ll all just grab teddy bears and pillows.
But oy, have I got a headache for you!
I’ve gotten my spasming feet wet a tad in the seizure dept; my latest forays have been into public seizures.
Start at the back…:
Had a seizure about a month ago, right before some dentistry. Dr Okada upped my Keppra dosage to the ceiling, at 3000 mg daily. Then I went to Chicago, a couple of weeks ago. Got off the plane, made it through a store, and had a lovely seizure laid out across the exit to my local Acme grocers (yes neighbors, that was me; howdy). Went home, had 2 more that day. Decently severe, longer lasting buggers, I might add. I visited the good Dr. in Pittsburgh, received my first booster vaccine in the trial restart.
Restarted the poly iclc, which is far less kind that it was the first few months. Nice little flu once a week.
We agreed—any more seizures and we would start adding a second medication.
Hit Love Park and City Hall this Thursday with Chris and Zach for a fun day out in the hood, and (you guessed it) had a nice seizure on the concrete by the fountain at Love Park.
So the Doc ordered up some Depakote (250mg 3 xs daily—follow that link, it leads to some research on this item actively fighting brain tumors) for me to take on top of the Keppra. I took the midday dose yesterday, the pm dose last night, the am dose this morn, and 2 hrs later I was having another stupid damn seizure.
Only now I can’t judge how stupid and uncoordinated I am from the seizure because the Depakote already did a good job in that department. It, by the way, is basically Valerian Root and Flouride, at base.
Anyhow: Next MRI was to be in September at the same time as the next vaccine. I was hoping to get into a T-3 fancy machine they have there. Now I MRI, and maybe get an MRS (spect) or a pet scan July 8th. Wow.
So, I’m freaking a bit. But it took me forever to type thing through the molasses in my brain, so that’s as far as I am going now. Naptime, all
NP
Once upon a time I felt so whole. Yes, always I pushed for more and more, to taste, to feel, to live and experience to the fullest extent that existence could offer. And still I do, even knowing that such blessings are also curses. Yearning has always been a part of my basic nature.
These days, however, it feels as though I have fragmented, become pieces of myself, each sectioned off from one another, not unified in voice, desire, will. One day I feel the urge for life to flow one way, the very next a contrary self raises its hand to destroy the steps towards desires that I had spent the day before reaching for, in my thoughts, my mind… my heart.
I am too many: a cacophony of voices; a conflict of existence. I want so badly, you see, so urgently, deeply, that I yearn with an ache much like that of a heart rending in two. I am, in an entirely new way, my own worst enemy.
A pattern has taken root, for self destruction. Oh, not of my body; I fight as hard as ever to breathe another day and another, to stay physically whole, intact. No, the wounding and fracturing I speak of is deep inside, the only outward sign of it being an increase of inertia, a few wrinkles of troubled thought and self let-down in the forehead, a slight frown that flits across my face. It’s destruction via the lack of action. To allow oneself to rot and wither through enforced ignorance, forced detachment.
It feels as though piece by piece, I am allowing myself to fade, allowing the compromise of my dreams in waking life, allowing myself to back down, to give up. I tell myself that so many things that once meant something to me, so many desires I wanted to chase, have simply faded, their importance and urging has waned. But the tiny voice behind that frown, and an increasing feeling of disappointment in myself, show that I am lying.
That’s the greatest sin of lies: I am lying to myself. If anything, everything is more important than ever, so important that my hands become tied, my thoughts twisted, my desires suffocated by a fear that doesn’t sound at all like terror—no: it sounds very much like a voice of reason.
Likely it’s that same asshole voice that insists it’s time to ‘grow up’. It winds spells of compromise that reach with webs to hide your heart’s desires from you, in some screwed up effort at self protection from disappointment. It’s destined to fail, that effort, but none the less we all seem to fall victim to its siren song, which offers a barter: your dreams in exchange for less pain, less heartache. That voice is deadly, and insidious; you don’t hear it coming at all, then suddenly it is wrapped itself tightly about your heart, making you think that YOU decided to make these choices, that this is what life is—get used to it!
The desire thumps just as hard within my breast; it urges and pushes with a pressure I can hardly keep down. So these days, I smother it; cover its noise with the variety voices vying for my inner ears.
Why? I have theories, but no answers. So much in life I wanted seems locked forever out of reach. The constant feeling of sadness that accompanies this awareness is too painful to keep in mind. What can I do, I ask myself; what is it I want? That’s half the problem—I’m not sure I have a clue what the hell I want anymore.
I suspect fear crept in at some point, garbed in a new disguise, one of safety. I cannot see it, I don’t know from which direction it comes, or where it plans to feast next, but I do suspect that the act of living with fear, and not always fighting this demon successfully, has created in me a state of constant compromise.
I tell myself it—whatever it is—is not so important. I tell myself that I am grateful for what I have. I am grateful that I don’t feel ‘that’ badly, that I am not doing ‘that’ badly. And where I cannot see it, the anger builds, until it surprises even me, rushing at my throat with fangs, filling me with rage at life, at self. I am so sick of the guilt that keeps me having a knee jerk reaction of being grateful. Since I can’t do anything about where I lay physically, I try to use logic to simply accept it. I try to see the bright side. I try to be appreciative of how well I am doing. If I don’t do this I’ll only whine, and the guilt is overwhelming. So many face far worse, with far greater grace; this will forever be true.
The man complained who had no shoes, until he met a man who had no feet—and all that jazz
But in reality, I’m pissed as hell. And I suspect this anger is at root for my splintered selves, the fear, the rage, the hopelessness. So much easier, I seem to express, to accept, to push back desires that may be beyond reach, to place dreams into the darker hidden corners of the heart, and just accept. What is, is; what isn’t will likely never be. A frightening thought that is, to find that dirty little crutch in my hands. Because when I am truly honest with myself, I want both shoes and feet, and the ability to feel, without guilt, remorse for what I have lost, joy in what I steal away, and happiness at what I can claim back into my own.
And I want even more to stop accepting the “is” and start again, as I used to long ago, to reach and live in each day. To celebrate all that can be celebrated. The choking off of hopes has also smothered desire.
This isn’t apathy, or ennui that I speak of, it isn’t a state of non-caring, of emptiness. It’s an all out war inside, amongst these voices, and the spoils are my soul. It isn’t a battle I can sit idly by and watch, for if I do so, I can assure you that defeat is all that will be had.
Fuck doing what is right, screw being grateful for what is, to hell with acceptance and grace. I’ve always been a scrapper, willing to gnaw my way through the bullshit and back to life. The terms I somehow accepted unawares are not acceptable. There is no sin in wanting; no evil in remorse. There is no reason for the feeling of constant guilt and of feeling so let down by myself. But there I shall stay unless I take action.
Guilt, fear, anger, rage, sadness, resentment: all these things must be allowed, so that I can face them, and walk away, in awareness, not in denial of their existence. So that I may move forward clearer of voice and head, more pure in thought and heart, on paths, no matter how petty or great, that will feed my soul, and create a life, a life not half-lived. They are but more faces of fear, that bitch of endless facades and even more endless paths to destruction.
Problem is, I just don’t have a clue what to do about all this. I distract myself a thousand ways, I have occupations I care about, chores enough to fill many days (some of which I never do get around to). It isn’t an activity I seek; it isn’t a need to be busy. I am too busy, if you ask me, or I’d have never reached this point unnoticed, due to being distracted. Its deep food for the root of my soul that I have neglected; the single pure voice of self that I have defiled by simply ignoring it, drowning out its cries amid a million daily time takers.
Worse, I have begun to allow things only half-important to me to start shaping my sense of self. It seems as though with the loss of that one true inner voice, the one straight from my soul, I am not just lost in how to live, but am left wondering who I am. I stare at my reflection and feel surprise at the eyes that gaze back at me. Surprise and disappointment.
Once upon a time, I knew who I was, I knew where I stood. These days I find I’m consoling myself by holding up accomplishments that while meaningful, are not a replacement for my sense of value, should never be viewed as more than add-ons to the Niki machine. What I do lately seems to be all I have left of my pride and sense of worth. I feel no value inside, or I would not feel such pressure to hold firmly in my minds-eye my abilities, to label my worth by what I can provide, what I can do. At this point I wouldn’t put it past me to create a list of nonsense reasons why I am valid: Which would just be truly pathetic.
It was never that way before. I have replaced my sense of core validity with a mirror, seeking validity from the world around me, judging myself by the yardstick of others. I was never such a meek and weak creature in the past to use such measuring tools. I lived, and I was full of life, even when going through hell. I knew me.
Even sitting dead still, I knew I had worth, and had my arms tight about my soul.
A new life must begin, even if at first it is forced and cramped and uncomfortable. These terms I live under now, this turmoil and confusion, will eat me whole while I sit still, if I let them. I must rearrange my life, and my mind, yet again, to find a new way to live. Trial and error shall be my route. Nourishment is sought, before I have starved the core of self, before I allow the silencing of my heart to be complete.
But maybe I’ll start after a nap, and some down time; maybe after a cup of tea and some light reading to bring my brain away from feeling. Maybe after a joint, a glass of wine, a movie…. Maybe never, at this rate.
NP
The entangling threads of my nightmare still linger, whispers at the edge of my hearing, tickles against my face, my throat, a lingering feel of inescapable realities that lead me to the edge of that land, to this area where I stand, halfway in between. My feet step, my face looks out at the sunny day, my pets snuffle and scurry between my legs, but still my heart races in urgent fear, and the eyes from the dreamscape follow me, felt in the little raised hairs against my neck. From somewhere behind me the dream still reaches through, darkening the corners of the sky, lurking in the corners of my room, of my mind.
A few weeks ago I got a geranium, a bitty little thing, with just a couple blooms on it–one of the sadder from the sales lot, really–but gads of buds dotted the plant, with the promise of exploding into a riot of petals that now has become a reality. I placed my dreams in the flowers hands, it’s purpose a sort of dream catcher, a safety valve between myself and the haunting of my overactive nights. And so far, the little bugger has done a pretty decent job of keeping the worst at bay.
Why geraniums, you ask? Why on earth would this science brained geek-girl do such a thing as to place her dreams in trust to a funny little plants, the very same plant that once was a major decorative feature of her grandmothers back porch? Good question. It all goes back to dreams, in my usual way of convoluted logic.
In years gone past, in the midst of wondering over whether or not I was losing my mind, while writing perhaps the ugliest of my ugly fiction for an even more vile customer, I dreamed of geraniums. While feeling my body rot from within as I faced cervical cancer, to feeling my mind play victim to the sewer of violence that I was creating from this ugly customers psyche and desires, I reached a point where the nightmares were so extreme, so vivid, they pushed through the barrier between wake and sleep, leaving me unsure of which horrors were real, which I created, and what was real.
Oh, I knew very well what events were real or not; I was not hallucinating, mind you. Well, not yet anyhow. It was the feel, the residue, the eyes pressing into me from a corner of nightmare land, lurking, laying in wait for my return, preying upon my sense of safety, my ownership of my own mind and emotions. Unlike the usual dissipating of powers that occurs after nightmares, as reality crunches them under sunshine, and the memory of the events and the terror once felt fade into ’just a dream’, these nightmares lost no power through time, space, and light. The physical pains I suffered in these dreams, during this period, night after night after night, would feel sore and bruised in the very light of day. A piece of hell came back with me every time I awoke.
This has happened off and on throughout my life, but at that time, it was an endless event: wake, sleep, wake, sleep, one bled into another into each other. What I wrote was as horrible as what I dreamed; what I feared in reality was as terrifying as what dogged my heels in nightmare land. At that moment in my life, there was no escape, as each fed into the other, and little by little I felt my sanity buckle under the pressure of fear, felt my mind fray and scatter. Under this assault without end, I began to feel that it was becoming one endless event, that no longer needed to fit logic. What use is logic in the realm of fear, when reality has become a tenuous thread at best?
I tried to not sleep for a time; that was a useless attempt. I tried to sleep all the time, thinking that my fears and the feeling of rotting from within were bleeding into the darkness, where they were set free to torment my mind in a place where I had no control. The idea of my body diseased from cancer, the sense of my mind being swallowed in the rotting cesspool of this customer’s desires, these were the daylight terrors. The idea was that if I could escape the thoughts and worries and input that filled my daylight world, perhaps I could hope to catch a few dreamless, lovely hours of true escape in sleep. That also failed.
At that time, we lived in a home on Maui, built way up on the sides of the volcano, in the midst of lava fields, in a forgotten area that once was the village of Kanaio, where all spiritual workers and healers from the ancient Hawaiian and Polynesian nations were sent to learn and study, live and grow. Our home sat in the ruins of this village, the old stone walls and cistern still stood, the graves of ancient healers and the royalty still lie in the lava tubes around the home.
All native priests and priestesses were sent to live there in times now mostly forgotten, to refine their arts, many sent from early childhood. The spiritual strength of this area could be felt within, could be experienced in the ancient whispers carried on the howling wind. There are no words that will express the feel of magic in this landscape. This is the real magic of nature, of energy; this sort of magic is neither benign nor malignant, not friend nor foe. As nature is, it simply exists. It holds within it both creation and destruction, without partiality.
If I had to quantify it, I would call such places as the birthing seat of universes, as the raw core of energies expressed and prima materia living in every cell. This is a place where Darwin could wonder over the constant surprises of evolution and still keep a sense of glee at all that science has not yet quantified into words or numbers, of all that may make people reach to the heavens towards the idea of gods. A land where ideas and emotions were as solid as the miles of lava rock under your feet.
After yet another day, week, month, of these never ending nightmares, in the midst of an especially violent section of the story, my mind deep in the customers ugliness and my own fears, I snapped. As I stood in the kitchen, not yet really awake, but no longer asleep, stuck by now in this half-there state and truly exhausted, the lines between the two states of being faded.
As I watched, blood dripped across the counters, spilled over the floor, even crept up the walls. Not down: up! As I watched, I knew even then the difference between what came from my haunting dreams, and where sat the world of ‘awake‘. Logic of reality argued with what I was experiencing.
The blood was as a shadow, it lacked substance. I could see the untouched solid kitchen as if through a screen of the nightmare vision. My mind fought and argued with itself, seeing everything darken, watching it all swallowed by this blood, hearing the roar of what seemed a river of blood in the background somewhere, my heart hammering at my ribs. I collapsed on the floor in sobs, rubbing hard at my eyes, trying to make it stop, make it go away. I was just as afraid of opening my eyes as I was closing them. I knew that all sat normal in my kitchen, I was not insane, I knew the image of blood and the bare whisper of screams from what sounded like a land far away came only from my tormented mind. I slid to the floor and sobbed, unable to go on, unable to escape the claws of the nightmares and the dreads of realities. They had become one entity.
I gave up and lay in bed until exhaustion finally led me back into sleep. And then I dreamed of geraniums.
I was back in the darkened alleys and abandoned buildings of nightmare land, but scattered amongst the dead and ruined scene were these geraniums, growing in the oddest of places: out the tops of rusted car hoods, blooming in the middle of glass littered asphalt. I was alone in the dreamscape, all alone–no eyes watched from hidden corners beyond my sight. Each time I saw a geranium, –pink, white, red, it mattered not,– I knew in the dream that the way I walked was safe. I traipsed the dangerous terrain with a growing sense of strength and security, as the flowers and fat leaves marked a safe path for me.
I took me several hours after that nap to scrape the courage and willpower up to get back to writing. The last thing on earth I wanted to do was continue with the story. It was bleeding, literally, into my everyday, it was seeping and creeping and eating at my peace of mind. But I finally did–I had deadlines, I needed the pay, I had bills past due. I could see no way to walk away. I decided I would simply spend the rest of the day editing the work of the weeks before on this horrid novella.
As I read, I started to realize that I had written the word “geranium” several times in the story. It was completely out of place; trust me, the story has not a single flower to be found in it. This was not a day’s event: I had unknowingly stuck this word into the oddest sentences–it made zero sense. I had apparently been doing this for days, I have no idea how many.
That night, as I lay down and sleep started reaching to me, I pictured the geraniums from my grandma’s porch. A small residue of the childhood safety that we lose before age 10 crept inside me. I had no dreams that night.
Needless to say, perhaps, this was the very last story I wrote for that customer, or for any customer. I would later reclaim my words as only my own to use, from my self and being and heart, and find another way to try and pay the bills. After that story, I have written only that which comes from within me, to this day. Never again will I brave the darkness of another’s ugly desires. The cost is far too steep.
For a few months after that, when nightmares would come, I would look around me in my dreams, until I found it: the geranium. It wasn’t always there, and I didn’t always have the mental self-control to see or look for it–lets face it, when you are in full flight from the boogeyman in a bad dream, thinking to look for a geranium isn’t generally a first thought.
As time went on, I lost the secret of the geranium, only very rarely remembering what it had done for me.
Nightmares are one of my personal curses. For some reason I have been chased through dreams for most of life, hounded, harried, beaten and bruised. Whatever you would never want to experience in the waking world, my dreamscape provided in spades.
Skipping the long story, a friend recently suggested I buy a flowering plant and “keep it alive” as part of a deeper delving into reiki, tai chi, breathing and visualization exercises all aimed at improving health, inducing greater melatonin and serotonin production, increasing oxygen absorption, keeping immune functions in great shape, keeping white blood counts pumping, dealing with stress to minimize health impacts, and much more. So of course my first thought is a geranium, as the entire ‘geranium‘ experience of the past came rushing back to me. When you dream like I dream, any straw you can reach for in hope will do just fine.
Without saying a word about it, I secretly assigned this little over-stuffed pot of healthy red flowers and bright green leaves the job of standing guard between me and my dreams. I never spoke the intent–this entry is the first admission ever that I may have pinned such a silly seeming hope onto a simple flower. It’s just not the sort of thing I would normally do, let alone admit to doing; me who sees magic and religions as mere human attempts and failures to quantify a scientific state of being, of laws and existence, that we simply are not advanced enough to understand or label yet.
Each morning when I awaken, I sit by this geranium and count its new blooms, watching it grow so fast and so well it seems almost to have fed on my un-dreamed nightmares that it swallowed whole. It’s near to busting out of it’s little pot.
Do I believe that a pot of flowers can protect me from my mind’s own demons? No. But I do believe in the mind’s ability to incorporate such ideas into functional tools for self-management. I do believe in our ability to use ideas and concepts in a much deeper and applicable way that has nothing to with logic and everything to do with emotions and what some may call the spiritual self. The scientific realities matter not a bit when one is attempting to battle a dreamscape, after all. Good luck convincing yourself that the dogs eating at your flesh while you dream are not real while in the middle of the terror.
So I am raising a guardian geranium. It makes as much sense as anything can when dealing with a recalcitrant subconscious.
And yes, since I got the geranium I have had far less nightmares than my usual quota. Those that I have had don’t impact so greatly, they lack the power to bleed into the daylight, lack the force to follow me into the waking world. If it’s just a silly mental panacea that in reality is nothing more than me screwing with my own head, well, I’m just fine with it. I’m just fine with anything that has me getting some blissful blank sleep on a semi-regular basis.
But last night’s was a doozie, I’ll tell ya. And not a geranium was in sight.
Most of it I don’t even remember: tendrils and twisting vines, hairs, plastics and metals and me trapped beneath this swirling pile, the pressure mounting, my heart drumming, dirt falling into my face. The world grew further from me, and further still, and soon I saw only a piece of sky in a rectangle above, the edges loose, a rough cut rectangle, blades of grass and chunks of earth along it’s edges, the sound of voices from above as I dropped lower and lower. It was the worm, and a set of toes, as the roots from a neighboring tree reached for me, grabbed at an arm, that made me suddenly aware that I was inside a grave.
I felt the same paralysis that comes over me during a seizure, the same desire and physical push to move without the ability to do so that I experience with the muscles that simply don’t work no matter how hard I try, that have been ‘switched off’ thanks to the brain tumor. The feel of paralysis is indeed its own sensation; it is not the ‘lack’ of sensation.
I lay in that grave, watching the world grow further from me, the sky narrowing in it’s little rectangle, the sun reaching towards me less and less, as I slowly slid toward a darkness deeper than anything I have ever seen. The cold ground was beneath my back as I stared helpless at the sky, and even in the dream I felt the cold creeping inside of me, grabbing onto my sides, sinking into me deeply. I pictured this cold of death even while in the dream, as reached into me, colder, colder, colder. The tendrils of weeds, of roots, wound about me, snaked about my throat, prodded at my eyes.
I tried to call out, but my voice was as paralyzed as my body, frozen and locked inside. I could feel the earth beneath my back moving ever so slightly as the bugs that would soon come to clean my bones started to move in anticipation of a new meal. I would try to breath, pulled as hard as I could with lungs and diaphragm to draw in air, but none would come. I was panicked that I could not breathe, even as I was aware I didn’t need to. My slack lips held small crumbs of moist soil which I could taste.
I could hear friends and family as if from far away, knew they were up on the grass, around this grave in which I lay. The claustrophobia was intense. The sense of paralysis was terrifying, the inevitability of what would be next had me trapped in my body in a panic that tore my mind to shreds. I sobbed in my sleep, knowing the shovels of dirt were about to fall across me and there was nothing I could do to stop it. And the tears wet my cheek, dripped across these roots and vines, made mud against my ears. The eyes of an unknown watcher, a spectator, in my mind Death as an entity, or perhaps no creature so powerful, a smaller guardian, a curious spirit that feeds off fear, bored into me.
I was still sobbing as I awoke.
The eyes I still feel as I type; the sensation persists that if I turn around quick enough, I may catch sight of this onlooker with too much morbid interest in my nightmares.
I think I need more geraniums. And maybe a fat bottle of wine.
NP
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Mutterings Of A Madwoman 
