A Matter of Time.

The thing about cancer is that it always looms.  Even when you beat it to it’s core, there is still that worry that it will spring forth new life and wreck havoc again.

I feel anxious and jittery these days.   For many reasons actually.  But this has been one that sits with me, compelling me to do so much more with the time I have been given, because you never know.  You just never know.

Time.

It is something that has become acutely aware within me.  I fear that there is not much left.

Everyone else sits calmly.   I can not.   They seem content with the motions.  Or in no hurry.  Priorities elsewhere.  Meanwhile, time…life, is slipping by.

If not now then when?

 

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Tired Climb

I’ve been keeping to myself since the completion of my final treatment.  Staying quiet. It’s been a rough one emotionally and for a few days there I found myself sinking into an ugly pit of anger and sadness.

Depression we meet again.

I wish I could say that it’s turned tail and scampered off, but it still sits at the foot of my emotions waiting for whatever scrap it can gnaw it’s teeth into.

I’ve been sort of distancing myself, not really reaching out.  Frankly I don’t have the energy to really explain the way I feel, because I feel that everything I am feeling in the past days is stupid compared to the grand scheme of things.  There is no real justification.  Again…on a grander scale.  That and I just don’t feel like people can truly understand or grasp the reasons why I feel the way I do.  So I waited for the tides to pull out before reaching out and easing back into “everyday life “and social interactions.

Cycle 7, if memory serves correct, went off ok.  I don’t recall it being too incommodious.

I was moving around quite a bit.  Getting out.  I think I  felt pretty good.

Another aspect of what was so great about finishing cycle seven was the realization that I just had one more cycle to go.  I found such a sense of peace and comfort in knowing that this whole hardcore chemo ordeal was almost over.  I was in a state of gratitude.  I found myself taking pauses to just thank the heavens that be for getting me this far.  Not going to lie but I also fantasized quite a bit about that moment when I would finish my last bag of chemo and the elation and alleviation that would hopefully follow.

Then came cycle eight.  The very last one.  I went in with my warrior face on, ready to knock it out of the park.  I felt mentally and emotionally prepared.  I knew what I had to do.  There would be no boo hooing about it too.  If they wanted to give me all the lasix, then so be  it.  I would do it.  (and they pretty much did, but I did it.)

There were some hiccups with the last cycle, but I tried to keep a level head about me and push through best I could.  (I said I tried, I mean I didn’t rip anyone’s face off…as much as I wanted to.)

My last lumbar puncture was an ordeal. The technician for the life of her could not get the needle into my spine, so she continuously kept jabbing me in areas outside of where she had numbed.  Not to mention she would also hit bone in my spine.  After thirty minutes of misses, she decided to try a spot that other technicians had found successful in the past.  Again, her aim was not precise and I had to endure another twenty minutes of needle jabbing.  You’d think with a fluroscope she could see what she was doing, but I guess the needle didn’t want to cooperate.  I think she was pretty upset herself.  She left the room in quite a hurry when all was said and done.  Still I got through it.

But no more lumbar punctures.  That was my last one.  So I suppose that is one good way to look at that.  Actually no supposing.  It is the only way to look at that.

The day I finished my very last bag of chemo, there wasn’t much fanfare.  Not that I expected there to be.  I had thought I would have been more emotional than I was… but I was unhooked from the bag and cried in my boyfriend’s arms for a few minutes.  We talked about how grateful we were that it was done and over, but I think the physical exhaustion of what we were both feeling took precedent over the moment, and naps ensued.

It wasn’t until my last day in the hospital, when I was finally unhooked from everything and able to take a shower that things started to shift to a dark place.  As I was putting my clothes on to go home, I caught glimpse of myself in the mirror and my heart just broke.

Who the fuck was this girl?

What happened to her?

How could anyone be attracted to this girl yet alone love her?

It’s quite superficial considering all that has happened and the fact that I am still alive, but it was definitely the catalyst into my depression and anger that ushered me into a million other thoughts and fears.

My body is a wreck.

All of my muscle has deteriorated leaving behind areas that are just out of shape.  There are ripples and dimples that have become quite prominent.  While maybe not major for some, for someone with body dysmorphia I can’t even begin to tell you how much it disgusts me.  I’ve never been comfortable with my body, mostly due to my bone condition.  It took me years of actually getting to a place of acceptance and self love and now I feel that I have just been shoved back another ten years.  What I see today is NOT acceptable.

It’s not acceptable because this is just one more thing cancer robbed from me.

And once again….I’m angry.

I can’t even look in the mirror while getting dressed.  When I bathe, I try to turn a blind eye.  It’s very unsettling to me and triggers all kinds of unhealthy coping mechanisms, mechanisms I am trying to not indulge in which can be very mentally tiring.

Everyone keeps saying that once I start moving around more I will lose the weight.  That once I start working out I should be fine.  That it’s not as bad as I think it is.

Yeah?  Well I don’t want to fucking work out.  I’ve already worked enough battling this asshole disease…and here is just one more thing I have to add to the clean up list.

I’m just tired of working at this disease.

Any disease for that matter.

I know it sounds unmindful that I would be so caught up in the physical, especially when I still have my life and that I have overcome so much. I am grateful.  Sometimes it feels like the gratitude sinks so far below the surface.  I know it’s there.  I can feel it, and when I go fishing for it, sometimes it’s an old boot or tin can that I pull up.  Not exactly what I was looking for, but there it is.  I’m sure the mixture of drugs isn’t helping my emotional state, especially the steroids.  I was told I wouldn’t have to take them anymore, so hopefully that will calm things down and help with me being more rational.  Of course I was sent home with the leucovorin to pull whatever traces of methotrexate from my body, and that always makes me feel like a loon.  I finished that last round a week ago, so again, trying to wait calmly for that moment of “even”.  Again emphasis on the word trying.

This journey is still not over.  There is still the maintenance chemo that will take place for the next year or two, and while it may not be as intense as the Hyper cvad or as time consuming, it will still be a part of my life, and a daily reminder that this dickface cancer needs to just stay away.

And stay away it better, because I don’t have time anymore for it’s bullshit.  I’ve got things to do…and yes, as much as it angers me and makes me even more tired thinking about it, I will clean up it’s mess, throw it’s shit out on the lawn, change the locks and move on with my life.

 

 

 

 

 

 

The Waves Have Come.

I’m nearing the end of the Hyper CVAD treatments.

Only two more to go.

I’m really fortunate that this last round went as smoothly as it did.  The only thing I noticed was the slow cumbersome drag of fatigue, which hit probably a day or two before I was discharged.

In fact, the Dr. was all set to send me home a few hours after finishing my last bag of Cytarabine.  To which I said no.  I wanted another night,  especially since they had given me 40mgs of lasix that morning.

Of course transitioning from the hospital to home is always strenuous.  Part of me is relieved to slip into the familiarity and comfort of my bed and blankets but there is that other part of me that perhaps goes through a sort of withdrawal from the accessibility and ease that comes with being cared for.  I don’t have to worry about drinking enough fluids, because they are being pumped into me without any real notice.   Only the changing of the bag reminds me that there is something dripping into my veins.  I don’t have to worry much if I feel sick or off, because I ring the nurse and they bring the appropriate relief.

At home I’m left guessing.  Which leaves me feeling anxious and paranoid about every pain, every sensation, every function my body undergoes.  I often lay there  wondering what is normal and if I should be concerned.  And it’s hard to judge what is “normal” as chemo affects everyone differently.

You become inimitably hyper aware of everything your body is or is not doing.

There is also a soul crushing sadness that seems to be looming and thickening as the treatments progress.  One would think it would be the opposite as the treatments wind themselves down to completion, more a sense of elation, but for me, these feelings have been getting heavier and heavier.

It comes with feeling isolated.  Being removed from the normal activities of life far longer than I care for.  Not being able to relate to the day to day of the world outside of you, and feeling you have nothing else but this disease to offer.

I spend a lot of time alone.  Not at the fault of anyone.  And even when I’m not alone I feel sad at my lack of contribution.  I can’t offer much.

Why would I want to have people sit around watching shitty Netflix with me when they can go about and have adventures?  Life with out the burden of this disease or its treatments.

Loved ones have the luxury of stepping away from all this….even if it’s for a few hours. And at times I am very  envious.  And of course…bitter.

Of course none of this is directed towards the people I love and adore.  I want my loved ones to soak up as much life as they can.  Even if it’s the mundane day to day.  I live vicariously through others at this point.

It’s the shittiness of this situation.   The shittiness that is leukemia and the course of chemo that leaves me so incapacitated.

I know a better way to look at all this presently is the fact that  I am still here fighting.   And kicking ass.  Many are not as fortunate.  And believe me, I am especially grateful in those regards.

Perhaps this is just all part of the grieving process.

The loss over a life I once knew.  The girl I once was.

The force-able wiping of the slate clean.

 

 

 

 

 

 

 

 

Ramble On

I know.  I know I’ve been a total poo as of late.  Debbie Downer, all pessimistic and shit.  Jaded and bitter. 
My sense of humor dulled and watered….my outlook on life darkened.

I’m in an emotional rut.  My depression is getting the best of me.  Fucker.  I hate that guy. 

I’ve been trying to climb out of this hole it created….er…I created, and get back on my feet.  It’s not easy.  It’s hard to find rainbows and unicorns amongst all the dick cheese and grime of this world. (Haha…dick cheese…ehhhh….ewwww.)

There are truths I seek, and they all seem to lead to disappointing endings.  Or fallacies that were never truths to begin with.   Carefully guised in the form of subtle manipulation and insecurities.
It’s hard to, well for me anyways, to discern these truths as axioms or if they are just isolated to me.  Am I just the one with over the top expectations?  Am I stuck on “expectations”? Or is it hope? What’s the difference? This seems to be what I am stuck on as of late.

We all know that we should be open and honest.  Love unconditionally.  So why do some individuals find this to be so taxing?  Why is it so incredibly crushing when the trust you place in another human being is violated?
Why do I constantly set such high expectations?  Are these high expectations?
It’s not me…..It’s the other persons crap. I don’t need to carry it. Yet I do. How can I not when it does involve me….as in the way they treat me.

I miss the me I discovered a few years ago.  Sure sure, she was going through some major shit.  But she got through it.  With sass and perseverance.  Intention, even though she had no idea what the intent was or where it would take her.

Breathe in….breathe out…move forward with Intent.

Did I forget this?
Hmmm….
Or maybe what it all boils down to is that I dimmed myself down due to the insecurities of someone else.

Never dim people.

I dunno.  I’m a just rambling here.  Making no sense as usual.

Kevin Breel: Confessions of a depressed comic

Kevin Breel: Confessions of a depressed comic #TED : http://on.ted.com/qTQo

I listened to this today and was so moved to tears.  I too, like so many out there, suffer from depression.
It’s such a difficult illness to live with because it IS something that is not taken very serious.  People are constantly telling you, to shake it off….yet you can’t.  It’s always there, no matter how much you shake.  People will tell you, Life isn’t that bad….and instinctively you know it isn’t…yet you always feel that is it.  And maybe the word bad, isn’t the right word……

And yes….you do become numb to it.  It’s crazy.  Sometimes I can’t even wrap my head around how it’s just something that’s….there….like a fixture in a room.

What really caught me about this talk is when he says “My hurt has forced me to have hope.”
And I can sooooo identify with that statement.  Many may see me as pessimistic but in reality, I have nothing BUT hope.  Hope that one day I won’t come across so pessimistic.  😛

But in all seriousness…yes…Hope.  Because sometimes that’s all you have.  That fart stinking hope….that shit will alight itself and you won’t have to just live with it.  That you one day won’t have to fake it…That you will overcome.

I Feel For You: Chakras, Synthesia and Energy

I did a Chakra Yoga Class.

Since I feel that we are beings of energy, I feel it is important to make sure that our energy is positively flowing.  It is so easy to become bogged down or “tainted” in this world.  (Tainted as in carrying around negativity, especially when that negativity is turned inwards.  It doesn’t do the soul or body good.) When your perception is pointed towards the negative, you tend to miss out on all the good stuff.  And there really is so much good stuff.  Not only that, but there really are physical repercussions that take place.  The body is tired.  Depression.  Chronic ailments that affect the joints, digestive system, so on and so forth.  I think when there is an awareness to when your being is closed off to a certain aspect of the mind and body, a shift occurs. . .and it just makes dealing with things a tad bit easier.  A sort of acceptance maybe?  Or plan of action to be put in place? (depending on the circumstance) As someone who suffers from depression I totally notice how different and off my body feels when I am in the midst of a low point compared to how it would feel during a “normal” point.

So as of late, I like to try and be more in tune with “Me”.

During the class the instructor went over the different chakra points and the attributes associated with each center.  We would meditate for a few minutes and  then go into a few yoga poses that are specifically aimed at opening up those centers.

chakra

For the last year? Or so, I have been having trouble with my root chakra.

The root chakra is at the base of your spine.

It is the chakra associated with the color red, the element of Earth and the sense of smell.

It’s also associated with the adrenals, legs, feet, bones, large intestine and teeth.

Pretty much your root chakra is your feeling of having the right to be here, the right to have and security.

When your root is all off it can lead to weight gain, constipation, sciatica, degenerative arthritis and knee problems.

Since it is associated with the bones, and I have this genetic bone disorder, there is not much I can really do about that now is there?  That was the one part I don’t get.  That is something beyond my control, and if you ask me, no amount of meditating on the word LAM is gonna fix it.  However, looking back, there was a lot of upheaval in my personal life (as in love life) and that whole decision on if I should move to my new place.  There was also that whole debacle with being let go from my job, to being called back, to being not sure how long this new company that took over would keep me on.  So, lot’s of un-stableness.  My depression was a lot more noticeable. (To me at least.)  I wasn’t exactly a content person.  I was dealing with a lot insecurities.

When we did the root, I could feel a buzzing red orb of fiery vibrating color sitting with in that energy location.

What really got me was that at the end of the section after we did the yoga moves, we closed our eyes and repeated the word “Lam” 4 times.  I swear that as soon as I shut my eyes and repeated that word, I saw . . . I mean actually SAW the color red.

It was so profound, that I wanted to cry.  (But I didn’t . . . because I’m not a sissy!  Ok, well that is a lie, I am a sissy.)

Now, I can argue that the reason I saw the color red is because when you close your eyes, they roll back into your head and it’s possible that you are able to see the redness of whatever membrane is back there.

It is also possible that it could have also been part of suggestion.  My mind flashing that intense color of red because after all, we were just focusing on it.

I should point out that I have acute synthesia.  That is where you see colors when you hear words or touch things.  (It’s not just seeing colors, it could be smells or tastes.)

So when I hear a number, or a name, I will see a color.  The thing is, it’s not always the same color.  So even though I will tell you today that Tuesday is blue. . . a week from now I could be telling you that it is a celadon color with drops of pink.

Also, when people touch me, I will see colors.  Depending on the intensity of the touch depends on the vividness of the color.

Again, it is not very strong.  My colors are muted half the time. . . maybe not muted, but definitely faint.  Also depending on what mood I am in, and how tuned in I am with my senses will also encourage the intensity and brightness of the color.

Anyways, where am I going with this?  Uhh, yes, the last possibility of my Red vision could be my synthesia.

However, as the class progressed, I noticed with just about every chakra,  I could see the color grow behind my eye lids. . . or one could even say. . Mind’s eye.

Now that I feel a deeper connection to my Root, I finally feel it’s time to move to my Sacral

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My Sacral Chakra is very weak.  And I am not surprised.  This chakra has to do with desire, sexuality and pleasure.

And well.. . .I know what my block for this one is.

I also felt my Heart Chakra the most.  Or I should say, that seems to be the one that is lingering for some reason.  My heart chakra is actually in a very good place.  Yet it’s energy seems to perforating the most.  It feels as though I am just “beaming” this energy out of me.

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We were given a test to take home to see which areas needed the most work.  Most of my numbers were pretty consistent (except my Sacral.) so I feel pretty good and balanced.

If anyone is interested in checking their Chakras, I have included a link where you can go through a questionnaire that helps determined where you are blocked and so on and so forth.  Even if you don’t buy into all of this, it’s still kind of fun.

http://www.eclecticenergies.com/chakras/chakratest.php

Reach.

It’s been almost 2 weeks since the death of my ex husband.  I am doing somewhat ok.  As can be expected . . . but at the same time . . .I am so not ok.

 

I have been going about my life, trying to do things that I normally would do.  I am in another show.  I went to jam last week and worked on hoop drills that I learned at Snow Flow.  I am hanging out with people. . . trying to make sure I still eat and not act out in destructive ways. . . yet, even though I continue on, there is still a level of fucked up-ness that I am carrying.  That I think I will always carry.

 

One of the reasons I got heavily into hooping was because of Depression.  I have pretty much been clinical depressed most my life.  I will also note here, that I am a self mutilator (which I have mentioned over on my other blog) I’ve been pretty good about it these days, though over the course of the past few  months, I have had relapses here and there. 

 

Hooping was also one of the ways that helped me get through my divorce.  I carried a lot of guilt about leaving my ex.  He was heading towards a downward spiral, and despite my efforts (though now I feel they really weren’t much of an effort) I could not get him to help himself. 

 

That’s the thing when it comes to any kind of depression or addiction . . . you have to want it yourself.  You can’t have other people do it for you.  And while I have been at the bottom of a despair pit (as I like to call them) many a times, just wanting a hand to reach in and pull me out, I also realized that when the hand is reaching down, you gotta reach up as well.

 

I think he was just too proud to ask for me to reach down.  And sometimes I felt like I myself was going to fall in from reaching down so much.

 

I wish he wasn’t gone.  Even though we didn’t work out as being a married couple, I still was glad to just know him.  To still be able to talk to him and see each other when we did.  I wish he could have seen the brightness he was.  The way he shone if he just let himself.  I wish he didn’t just see himself as the sum of all the fuck ups and mistakes that humans inevitably make.  That he meant so much to so many.  That he was loved. 

 

I loved him. 

 

And yet, I also blame myself.  Because that is what I do.  I didn’t try hard enough.  I didn’t love him enough.  I  should have done this.  I shouldn’t have done that.  I wish I just would have been better to him.  That maybe if I hadn’t been so selfish. . .

 

I carry these thoughts with me.  No matter what I do.  While I am at rehearsal or trying to learn lines. . . they are there.  While I am talking with friends. . . they are there.  While I am trying to force food down into me. . . they are there.  While I pick up my hoop and try to find my space. . . they are there. 

 

They will always be there.  Because he will be forever gone.