Damn, how many TV/movie references did I use in this?... I need to put down the remote.

I want to give an informational update as to where I'm at with treatment, well, as informative as it can be, coming trough me, from the doctor's, who, when they explain it to me, only about 25% (that's probably being generous) registers as anything more than, " Wahwah...radiation...Wah Wahwah Wah...chemotherapy...Wah...scan...Wahwah Wah Wahwahwah...spinal tap." What the what?

So yesterday I finished a 3 week course of radiation to my WHOLE brain. Radiation continues to work after you've finished treatment, so at this point, nothing is gone, but hopefully shrunk, and continuing to shrink. (The little bit of hope that I spoke of in a previous blog about the bumps on my head shrinking was dashed by the doctors yesterday when they told me "Yeah, that doesn't really mean anything." But I think sensing my letdown added "But it can't be bad, right?" Uh? You're asking me? Don't ask that of me, you won't like my answer).

Radiation in addition to killing cancerous cells, also kills healthy cells. The healthy cells will regenerate, but like with any healing process, it takes time. As of right this moment my vision has not improved, BUT it hasn't gotten worse (very good thing). So we wait 6 weeks for the full effect, then take pictures of my brain, but over the course of the next 6 weeks, the only real thing I have to go off of is if my vision starts to get better.

In my first visit with the Radiation Oncologists, they told me my plan, as well as, some other possible plans for the future depending upon the results of this first plan. As far as radiation goes, they mentioned the possibility of gamma knife radiation, where they target a specific tumor. A treatment used more commonly on people that have one brain tumor, not like me and my baker's dozen, where they just radiate the whole damn head. But it is one tumor in particular, right on my brain stem, that is causing my brain and my eyes to have, "...a failure to communicate."

In the meantime, I will be going back onto some form of chemotherapy, which has yet to be nailed down, due to some tests needed first, which leads me to the spinal tap. Monday I will have that procedure, don't know when I'll get the results, but what they are looking for is cancer cells having a pool party in my spinal fluid. If they are, then we're gonna dump a shark in their pool, no fuck that, we're gonna dump a metric shit ton (actual unit of measure) of piranhas in there! Way feistier. Now the way they administer chemotherapy to the brain and spinal cord is through a "port" placed in the head. I already have a port in my chest for my regular chemo, so the port in the head doesn't really freak me out, but it is a surgical procedure, and even after all I've had, I haven't grown to like them. And if they're not there? Well, they may just do it anyway for good measure.

I have to take a mandatory couple of weeks break between radiation and chemo, which will probably not be too much of a break, since there are tests to taken, results to be discussed, plans to be hatched, but it shouldn't mean being down at the hospital everyday. And to that I say, thank you Jesus! Time for a little trip!
So next on the line up is Spinal Tap, let's turn this shit up to eleven, and ROCK ON!

Radiation, done.

Today was the final day of my radiation treatment. Now I wait 6 weeks for an MRI. I felt I should make some sort of record of the occasion, so here it is, but have yet to feel, think, inspire, anything of substance to say about it. I'm kinda numb.

So hair went bye bye. And I, once again, heard the doctors utter the phrase, "We've never seen anything like this before!" Of course you haven't, have you met me? No? Well, I'm the girl where everything that happens to me seems to be some kind of first, or rarity, or just plain not supposed to happen by the "norms" of cancer.

Not that losing your hair doesn't happen when you go through certain cancer treatments, but I literally had hair Saturday night, and by Monday morning it was gone... not going, gone.

The radiation docs said the radiation shouldn't have even made it all fall out, and it definitely shouldn't have all fallen out at once. My only other guess is when I went out Saturday night, in order to maintain a reasonable amount of energy to be mildly social, I drank about 5 RedBulls. So I blame the toxic, cow piss, which I think might be radioactive, itself... it gave my hair wings.

But it's not all bad. I made a discovery that has given me some much needed encouragement, as far as the treatment process goes. With radiation there's really no good way of knowing if it's doing anything until well after it's done. So you go through these treatments hoping and praying, but essentially just... waiting.

When I first went through chemo, and lost my hair (the "normal" way) I discovered little lumps, and bumps, and other oddities on my scalp that I always kinda knew were there, but never paid them any attention. I asked my doc about them, and she said they were most likely just benign growths, between the skull and the skin, a lot of people have them, they're not dangerous.

So I got outta the shower yesterday, and toweled off my perfectly smooth, hairless head, and then realized something... it was very nearly perfectly smooth. The bumps that had been there were shadows of their former selves.

Now in all the hoopla that my astonishing hair loss caused, I forgot to mention to the docs my discovery. So I don't know if the radiation has anything to do with it, but it makes me hopeful that if the growths, be them benign, are shrinking on the outside of my head, then just maybe that's an indication that the asshole growths on the inside of my head are shrinking, too.

And that it's not from all the RedBull.

Wait... am I dying?

Beside this, so far seemingly, therapeutic from of catharsis, "the blog", that I have begun, I also have a much more traditional, and less techie, form of therapy... I see a therapist. Which I highly, and constantly, recommend to anyone with any issues! If I had to choose between my two forms of therapy I would choose to sit with a real person and ball my eyes out any day!

That was not always the case. I had a therapist (not by choice) when I was in high school, when I was a "troubled" teenager. Personally, looking back, I think I was just hormonal and angsty, what 16 year old isn't? And the therapy I had then consisted of me sitting and complaining about living with my parents (ironically enough, a topic that comes up a lot in my current therapy) while she sat across from me with a yellow legal notepad, wrote things down, and said " Mm,hum", and "I see", and the biggest cliche one of all time, that I had to stop and look around for the camera, because I thought I was in a movie, "How does that make you feel?"

Now that's not to say I don't think teenagers can't benefit from a good therapist. Just the opposite. I vividly remember that feeling, when something in my life would go wrong, and I could not see past it. The feeling that the world was coming down around me, with no way to recover, no reason to even try to go on. That feeling of complete and utter hopelessness, that I haven't felt that strongly since...not even now, with cancer. And I don't have to tell you there are a number of teenagers that don't see past it, and tragically, find no reason to go on.

One of the topics I've talked with my current therapist about is, "What happens at the end?" Not the death itself, the just before death... the dying part. Because honestly, that scares me far more than the unknown place I will or won't be going once I'm no longer here.

My grandfather recently passed away. They brought in Hospice for his final weeks. He seemed pretty comfortable, and when it got really close, a syringe full of morphine helped him along his way. Doesn't seem so bad?

But me, the dramatic one, can't help think back to the movies I've seen, picturing myself lying in a bed (and still living in my parents house!) All bald, and sickly looking, with only my mom, and close family there, crying. And I think to myself... that would suck.

One of my fears is having my friends see me like that. My even greater fear is not having any friends come see me at all.

Well recently, actually since I started this blog, I've had a number of friends, some I haven't seen in years, come to see me, others with flights booked, and plans to see more in the works. It's fantastic, I can't hardly stand it! I'm so excited.

But then I stopped and thought... Do they think I'm dying?? Maybe my blog is making this out to seem more serious than it is?? That is when my therapist had to gently remind me, "Kourtney, this is serious."

"Wait... am I dying?"

That question wasn't given an answer, I hope the reason is because there isn't one. But I was reminded of my fears, and it was brought to my attention that right now, at this moment, regardless of the warfare going on inside my body, outwardly I'm happy, vibrant, energetic, vivacious. And isn't this the way I want to see my friends? Hell yeah!

A Letter to My Sister

Hey Morgan,

Well so far there's nothing wrong with my appendix, so don't go making deals with the devil just yet, especially not over an organ that seems to have no real purpose anyway!

So I'm confused? You speak of your disgust with the system, all the while eating a brownie, which you say you don't deserve, but that you didn't break any laws?

I'm not asking you to defend yourself to me, but in reading your letter to the boy ( I hope you don't mind, and I will save it for him) you used the metaphor of: there are those, such as yourself, that keep their colors of life's playdough colorful, and those, the majority, who mix it up till it's just grey (sorry to inform you, the boy got playdough for easter, and likes nothing more than to mix them all together).

I myself take offense to that. Not just as an artist, but as a strong willed individual, with a degree of disdain for "The Man" myself. However, I have never found myself in your situation, nor do I feel like I am just a sheep in a flock of nameless drones. What I have felt is frustration, anger, and sadness at times, because it doesn't always seem fair, but when millions of people live in a society there is an unavoidable amount of conformity that is required to keep the "peace". And it is up to us as individuals to find constructive ways to conform with integrity. That could be with art, or music, nature, or trying to make a change in this world with advocacy and activism...which are far more powerful approaches than flat out rebellion out of spite.

And I know you have the talent and the passion to do whatever it is you set out to do, but I'm led to believe, due to your current circumstance, that this has nothing to do with not wanting to mix your playdough.

I'm not going to go into what I think about the situation you've landed yourself in. But I do want to say there are circumstances surrounding it that have me angry with you. I don't have to tell you that I'm not close to dad, but the fact that you took him on as his caregiver, and he had to be lawfully removed by APS, and placed in a facility in Stockton, where no one he knows can visit him, greatly upsets me. Again, I know both you and dad feel that APS is just another watchdog of the man, hell-bent on interfering in peoples' lives. Well, your right. But it is exactly for this reason. The situation you put dad in was unacceptable, and something needed to be done, before you ended up in jail, not for whatever it is you're in there for now, but for abuse, neglect, or even involuntary manslaughter.

I don't believe in Karma anymore, and this may sound fucked-up, but I do believe that, in a way, dad has brought this upon himself, partly by allowing you, when you were younger, to be the rebellious individual that you are, and not disciplining you, as a parent should.

And while we are on the topic of parental resentment, I know you resent mom, and that is how you feel, probably more so than I resent dad. But if you cannot see the potential for the boy being "brainwashed" by his father, much like I believe you were "brainwashed" by yours, to resent his mother, and therefore leading him to not want to have anything to do with you, just like you don't want to have anything to do with your mother...well, I'll have to contradict my previous statement about Karma, and say, "What goes around, comes around."

My only, unsolicited suggestion, is to suck it up, get your shit together, so that your son at least has the option of making his own mind up about wanting to see you in the future, rather than confirming everything his father tells him by being in jail, or homeless, or dead in a fucking gutter.

Ok, I'm done lecturing. If this made you angry, or feel that I am against you, it was not my intention, just the opposite. I think about you everyday. I miss the sound of your laugh, and your smile, and the most natural, spiritual connection I've ever felt with another human being. And it's just not because we are sisters. It is far more transcendental than that, we are soul mates.

I love you.

Kourtney

I woke up today, and my follicles hurt. It won't be long now.

Just a quick little happy note...

About a week ago when my oncologist called to schedule her appointment with me, she also told me that she had informed my orthopedic surgeon of my MRI results, and that he wanted to see me, as well. I asked her if there were any concerns, and she used some terms such as "hardware", "pressure", "movement", in a rather vague, noncommittal kinda way, which of course, had me freaking the fuck out!
Side note: I have 2 titanium rods running the length of 12 vertebrae, 18 screws, and a titanium cage holding the place where the T 3,4, and 5 vertebrae used to be, before cancer ATE THEM! I had the the first spinal fusion surgery June 11, 2008. The hardware failed 8 months later, and I had the second, spinal fusion replacement surgery on February 12, 2009. It is now April 22, 2010, over a year from that second surgery.
So back to freaking the fuck out. When I hear certain keywords, such as the ones listed above, spoken in reference to my back, I..I..I get a little nervous.
Not to worry! The Doc just wanted to check up on me since it had been soooo long since he'd needed to see me, and everything looked A OK! He gave me a big hug, told me he liked my tattoo, and loved my eye patch ;-) I told him I hope he was paid well for my surgery.
I love my orthopedic surgeon!

I'm not religious. At least not in the theatrical sense. Meaning I don't believe in the show. The stage, the audience, the costumes, the script, or even the principle players...living, dead, resurrected or ethereal.
I am however open to the belief that I, as a mere human, one of billions on this planet, along with a seemingly infinite number of other living things, have no idea what there is beyond the world I live in, both in life and after death. In fact, if I were to best describe what I thought there could be, I would use what some might call a cop-out, and say I don't think we are meant to understand.
Yet, humans have continued to discuss, debate, argue, alienate, oppress, and kill over such topics. Because if there's one thing I've learned, it's that we don't like not knowing how things work, and once we think we have it figured out, we don't like others not knowing how we think things work, too.
I've heard the argument that we have been given the gift of reason for just this purpose, to question our existence. I personally, lean more towards the idea that our brains have just evolved into being able to reason, and they are still quite flawed at that, hence all the debate.
With all that said, I'm still here right now, having this debate with myself right now. Maybe it's just my meds, or maybe one of my 12 tumors is pressing on the part of my brain that makes me think about these things, or maybe this is just what people do when they become very aware of their mortality... or maybe I'm not supposed to understand.
One thing I'd like to say is that I believe in prayer. Maybe not in the sense of the word that many people associate with it. I believe that we are all part of a great human network. Let me restate that, a living network, everything on this planet. And that somehow, someway, our energies are connected. And whenever we send a message out into that network, it has the power of connecting with someone or something. And that message can be sent by any means: prayers, thoughts, vibes, love. Who you choose to address that message to is all a matter of choice.
I have received a great deal of messages that I'm being prayed for, that I'm being thought about, that good vibes are being sent my way, that I am loved. I'm not just talking about the ones sent via comment or email, though I do appreciate those. I'm talking about all of them. The ones I receive every minute of the day, from someone, or something, somewhere, via this great living network. Thank you.

Banana Bread

I just baked banana bread. And I'm wearing yellow. Don't know if there is any correlation, but they both make me happy.
The folks are out of town for a week, the broder went out for the night, I'm home alone, and it's the night before the start of week 2 of treatment.
This would be a good night for reflection. The last 2 weeks have been a whirlwind, I feel like I have yet to wrap my head around it. But maybe I just need to decompress.
Aside from finding out about my brain invaders, starting a totally new intensive treatment, trying to not think about grad school, which up until a few weeks ago was ALL I thought about, adjusting to my vision limitations, I have also moved my horse, given away my turtles, and am currently making arrangements for my chinchilla.
Those who know me would not be surprised to know that I have a bit of a zoo. Leo, Mica, Rico, Mia, and Lola. The turtles I had for 5 years, I raised them from silver dollar sized hatchlings. They weren't affectionate, or even very good company, but I liked them.
When I was first diagnosed with cancer I was desperate for a fuzzy companion. It went against many of my principles of pet owning, buying from Petco, keeping a caged critter, one that is primarily bred for pelts, and may have even come from a ranch that raises them for both. I didn't think about any of that, I wanted a little friend to love me unconditionally. And that was Rico.
And then I found out that you aren't even supposed to be around pets, especially the rodent variety, during chemotherapy, due to lowered white blood cell counts, and possibilities for infection. I took my chances with my first round of chemo, and came out ok, but I met with my doc the other day to discuss my future treatments, and I may not fair so well next time. I was told she will most likely be putting me on the oldest form of chemo there is, which is also the harshest. She said, " You will be like the classic idea of a cancer patient on this treatment." I appreciate her honesty. So Rico will need to go.
That will also mean being unable to spend much time with my horse, for the same reason. The horse, Mia, has been a sore subject at some times. No one wanted me to get the horse. My orthopedic surgeon could have killed me dead when I told him, a few months after my back surgery, that I bought a horse... and had every intention of riding her. She was also used as a scapegoat in ending a relationship/friendship, though I know she's not the real reason, because truthfully, I would have sent Mia to the glue factory if it meant that relationship could have worked.
I wanted a horse of my own before I died. My life plan was always to live the life of a theatre artist, and when I retired own a horse and a garden, and it wasn't looking like I was going to make it to retirement. So now I have Mia... and a garden.
She's gone to live with a friend for now while the pastures are filled with Spring grass, and she can be with other horses. I rode her yesterday. It was nice.
You might think I learned my lesson with the chin, and the horse, but nope. Next came Lola. My parents had expressed an interest in getting a dog, and I jumped on this. There are no regrets. Lola is the closest thing I will ever come to having a child, and she is my pride and joy. There is no loyalty like that of a dog. She makes me smile countless times a day.
Time for reflection. All this change has me a little sad, and though I know the animals which have left or are leaving will be going to loving homes, I can't help but feel that I have let them down in some way. It will pass, and it is all for the best. I know this because I did not actively seek out any of these arrangements. Through a number of animal loving friends, which I cannot thank enough, this all just happened. And despite all that has happened lately that could have jaded me, and made me believe that all is senseless and even cruel, I still do believe that things have a natural way of working themselves out, when it is right.

Radiation is kicking my ass, and I've had only had three sessions so far. To be completely honest the side effects could be far worse. I am so lethargic, I can barely drag my ass outta bed to the car, sleep the whole way to my appointment, zone out on the way home, and fall asleep on the couch for the rest of the afternoon.
You may be wondering how it is that I'm up right now then? Well, the steroids they have me taking to combat the side effects (namely nausea, vomiting, headaches, what have you) have some side effects of their own. One being that I'm always hungry, and not just hungry for your average bear, hungry for your average bear that's also a defensive lineman.
So the only reason I'm out of bed is so that I can eat, and the only reason I'm not eating laying down in bed, is because I don't want to choke on my food and die ironically.
Though, that would be a big "Fuck You!" to cancer, wouldn't it? Like, hey cancer, this sandwich was able to kill me before you could, you pussy.

Optimism. It's a term, that, to many people, represents a whole state of being, and can be so simply determined by the age old standard of, " is the glass half full, or half empty?"
And once having answered this question you are deemed forever to be one way or the other, optimistic or pessimistic.

I have been told that I am optimistic. I have myself seen it as a virtue, and strove to be so. Looking down on pessimism even. But I think that the two poles of this particular scale have been so stretched apart, that it has become hard to see the grey area that exists in every spectrum. And the value that has been assigned to being optimistic has gone beyond a a simple state of mind, to be expected to be able to be some sort of transcendental power. The glass is half full, but just because you believe that, does not necessarily mean the glass is going to magically fill itself to the top.

And I think that is where some lose sight of that grey area. So wanting to believe that if they think positively they can actually change what's in the glass. I think that's a little something known as miracles, and I do believe they happen, but I'm sure I don't have to tell you that they are few and far between, and don't always happen to the people that you may think deserve them.

So what's the grey area? I guess I would best describe it to be realism. It feels almost defeating even as I write it. Like if you're realistic, that automatically makes you not optimistic, and there for you are thrust to the "bad" side of the spectrum. That half empty glass of water that you're going to drown in.

And I think something else has been lost sight of here, is that there is, and only ever was one glass of water. And if your opinion about it changes day to day, or even minute to minute, that's okay. Because the amount of water will never change.

...Well, not without a miracle ;)

Radiation Day 1

I was filling out my appointment book yesterday, and was abbriviating radiation with "RAD". It reminded me of an elementary school lunch room poster like "Carrots are COOL!".... "Radiation is RAD!"
And actually, after having my first treatment today, it was not scary at all, a little disappointing even. How, you might wonder? Well, when I first went in for the simulation (where they just map out the places they're going to zap) it was in this really high-tech room, all white walls and frosted glass, with cool blue ambient lighting, and projected images of a beach in South America on the walls and ceiling, and all technicians were Asians in lab coats (racist I know, but it brings me comfort).
Today I'm shown into your typical beige room, hospital wallpaper, and a mural painted on the ceiling, which I'm sure some people find lovely, but me being a snobby artist, found it highly offensive to my sense of aesthetics.
So the machine rolled around my head flashing pretty blue light at me, five minutes, and it was done. I asked the technician after, if people ever say they can smell the radiation. His reply was, "Yeah, they say it smells metallic, and some people even say they see flashes of blue light."
Oh, so what you're saying is that light wasn't real... RAD!

Friday will be the first day of 3 weeks straight of my dome being nuked. Yeah, it's scary, but it has me somewhat hopeful. It's hard to get too hopeful, though. I feel like that's what's gotten me into this mess. Like I got too cocky, I recovered so easily from back surgery, amazed all my doctors, was out riding my horse, and lifting buckets of paint like nothing had every happened. I let my guard down, and got caught.
And not just with one lesion, actually I don't know how many in total, because the doc stopped counting after 12. And here I go being cocky again, but they seemed a little amazed that with the number of tumors I have in my head, that I'm not a drooling, deaf, blind, vegetable in a wheelchair.
I know that's a possibility, though. I don't want to face it, because I don't want it to seem like I'm giving up, but it's probably time for me to write a medical directive. Because, you really just never know.
Back to being hopeful! The whole thing that tipped me off that something wasn't right in my head (besides the usual) was a change in my vision. I am a visual artist, not only my career, but a huge part of my identity relies on my ability to see and create art. That has been seriously threatend, and because so far with all that has happened to me, I assumed that the damage that has been done could merely be halted at best, but not reversed. The doctors told me there is a possibility of my vision getting better. And a possibility is all I need.

Like it's happening all over again...

So here it is. That moment that I always knew was a possibility from the moment I was first told I have cancer. My cancer is already stage IV, which means it's already metastasized, but up until this point it had just been to bone. Sure it wreaked a lot of havoc, broke my back, nearly paralyzed me, but it wasn't overtly life threatening. Well, it found another cozy spot to take up residence, my brain.
It still hasn't sank in yet, and I really don't even know what that means. But when my doctor called me to tell me the results of the MRI, it was the first time I heard her voice tremble.