A Burdence

Most my life has been spent feeling as though I am a burden to someone.

Having gone through cancer….hasn’t lessen that feeling.

I don’t know when I will return to full capacity.  Yet I feel that there are expectations and assumptions about my return to “normalcy”.

I don’t even know what is normal anymore.  Not that I ever really believed in a “normal”.

Truth be told, I just don’t know what to do with myself now.

I don’t feel as though I am ready to jump back in full swing.  One, my energy wanes from time to time.  I get sick on occasion.  My immune system is weak causing me to pick up a cold every other week.

I know during my treatment all I bitched about was getting back to my life and the things I loved to do.  Yet now, my life…those things I loved to do have become tiresome.  Difficult.

This rant is nothing new.  Just the same old blah blah blah that plagues me from time to time.  Yet, when it comes to others, and their sense of time, It just feels like more is expected of me.

And I just don’t know what to expect of myself just yet.

And I don’t want to expect anything really.

Because I just don’t know.

I just don’t know where to go after all of this.

And it’s the scariest, most depressing part of this journey thus far.

The Year of Rebirth: Alive and Kicking.

Once again, another year has come and gone and a new one is upon us.

Let me just say that I am sooooo glad to say goodbye to 2016.  It truly was a fucker of year, what with having cancer and everything that goes with it, loved ones struggling, Trump being elected.  I mean seriously, I don’t know what crawled up 2016’s ass and died but it pretty much had a vendetta for most of us.

Of course with turmoil, comes knowledge.  I know that a lot of people struggled with 2016 on various levels.  I would hope that out of those struggles, a deeper understanding of ourselves has been attained. With the passing of 2016 we can now move out from under the rubble of such a tumultuous year stronger, wiser, kinder and with more love in our hearts.

Each year I try to attach a theme to it.  Something to work on or overcome.  A reminder of some sorts to help me be the best me possible.  It was something I noticed someone I know doing way back when, and I thought it such a great idea.

I’ve had many themes over the years.  (you’ll stumble across them if you dig about in this here blog of mine.)

Sometimes I come out a champ.  Sometimes I don’t.   I reflect, take what I need to be a better me, and move on.

The last few years I began calling upon the wisdom of the Fairy Oracles to share their insight in the potential the year could bring, and what areas of myself I should pay close attention to and work on.

Last year they must have been incredibly drunk and on crack, because the card pulled for the theme of 2016 was…..Vacation.

If they thought taking a vacation from my day to day was going through chemo treatments, well I gotta say…I disagree.

In any case, 2016 became the year of survival.  Whether it was known or not.  Because that is exactly what I did.  I survived.   (and if you are reading this, you did as well.)

As 2017 made it’s appearance, I toyed once again with consulting the fairies about their thoughts on what the focus of the year could be, but before I could get my deck of Oracle cards out, a word began to reverberate with in.

rebirth

After all the muck and mire of 2016, Some sort of re-birth is needed.  A Renascence if you will.

This is the time to come back alive.  To shed whatever crap 2016 burdened us with and begin anew.  Like the phoenix rising from the ashes.  The time is now.

If not now, then when?

And I am tired of waiting for “when”.

This is the year to do something you’ve always wanted to do but were too afraid.  Fuck that fear.  Do it.  You owe it to yourself to get out there and tap into your authentic being.  Authenticity doesn’t come from being afraid, or putting something off till tomorrow, or the next week, or month.

And not only is it getting out there and living life to it’s fullest, it’s also living each and every moment with gratitude.  Even when the shitty stuff happens, because it is only then that we truly realize how strong we are.

So there you have it.  The year of rebirth.  The year of really digging deep and connecting with who we really are, and really living that truth to the very best of our ability.

And yeah, living it up while you can.

 

Out of curiosity, I consulted the fairy oracle to see if they too were in tune with the idea of renewal for the year, and what do you know…..They feel Vacation is still a good theme for this year as well.  Or maybe they are trying to tell me they are on vacation and to quit bugging them.

Those damn fairies.

vacation

 

 

 

 

 

 

 

 

Nose to the Glue Gun

I taped my Burlesque pasties back on this past September.

I wouldn’t say I am in full on Foxy mode, as I have yet to incorporate the hoop back into new numbers, or perform older numbers.

Hooping is still quite cumbersome and trying.

The effort to actually….jump…even a few inches.. is akin to the feeling of twenty pound weights tied around ones ankles.

It doesn’t help my on going problem of balance and stability.

So sans hoop I have been going.

I will say though that my costuming has improved quite a bit.  Not to say that I had shitty costumes before, but the effort for me…on some things were a few ruffles sewn in here and there.

One of the biggest appeals of burlesque for me was all the glitter, sparkley, fluffy, shiny fun things one could wear.   (You basically can wear anything.  That old potato sack?  Couch cover?  Dining room curtains? Pot holders?  Just throw some glitter on it.  Good to go.)

I have become best friends with my glue gun.  (And pretty much burned the fingerprints off my fingers.)

For my Troupe’s Vegas show I put together two showgirl looks…..

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Ok it’s hard to tell really and I didn’t get a good picture of me looking Vegasy…but you get the idea.  Definitely more bling going on.

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Bling!

 

I did a real cute number where I was trying to get this man to notice me while we were waiting for our bus to Vegas.  Coyly flirting at first, then as my subtle advances fell on uninterested eyes, I would punch it up a notch with more lascivious moves and then burying the mans face in my bosoms.  (The man kindly played by my fiance…as I don’t think he would have approved of me motor boating some other dude….and not that I would want to motorboat some other dude.)  I would post the video, but it was during this performance I had my very first pastie pop.   Took me a whole good five seconds to realize it as well.  So, there you go world.  You got some nipple from me.  Ehh whatever. I wasn’t that bent about it.

Our Halloween show, I took a more..bizarre road?

I definitely wanted to up the creep factor.  So this is what I came up with.

 

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I’m not really sure how this one went over with the crowd.  Personally, I thought it was creepy.  I busted out my poi, which is something I hadn’t done in a loooooooong while.  And let me just say, spinning poi in a poofy crinoline skirt is not easy.

Overall I am pretty proud of this one.  I feel it’s pretty unique, to my local scene anyway.

You can see the video to that here: Foxy Moon Halloween

No pastie pop there, though I do have a moment to make sure everything is intact. 🙂

 

The last show I did for the year was a Heavy Metal Food drive for our local food bank.   Our troupe did a improve-ish group number.  I dressed as an elf and made the whole group reindeer pasties, because honestly….how could I not??  They were so F’n cute and fun.

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Move over Rudolph.

 

There you have it.  Or there I have it.  My getting back into the waters of burlesque.  I’ve got some down time till next April, and I’ve got some more silly ideas.  I would like to get back to hooping.  I know that I could.  It just takes time and discipline.  Yet the whole ordeal with cancer has made me very flippant towards anything that requires “hard” work.  I mean, I just worked hard on beating a fucker of a disease and pretty much, oh you know, not dying.  I’m not really ready, nor want to do battle with learning how to hoop all over again.  But I know I will, because I can feel it calling to me.  I may never be the best hooper in the world.  Shit, I may not ever be a decent hooper again, but something inside me loves it to much to just walk away and be done with it for good.

I just don’t want to deal with that struggle right now.

 

Jackyl

A lot of time has passed since I’ve last posted (Does anyone read this anyways?)

So much time in fact, that I am nearing the one year anniversary of my “D” day.

The day I was diagnosed with cancer.

 

It’s a strange feeling.

There are times when I am at the cancer center for a check up or blood work, and I am transported back in time when my life revolved around those hospital stays.

It makes me almost feel lost again.

The thought of me getting back to “life” somehow feels adrift.  There is this feeling that I should be on my way back up to the third floor for another round of treatment.  Another week of lasix, heavy chemo, and major fatigue.

Funny what you get used to when you bitch about not wanting to get used to something.

Maintenance has been slow going.  Every two weeks I am pulled off of something due to my white blood cell count being to low still, or my liver enzymes being to elevated.  At the present moment I am on nothing.  Which worries me slightly that I will have to stay on maintenance longer than anticipated, but my Oncologist assures me that I am doing just fine and not to worry.

And really, I’m not all that worried.  But it does sit in the back of my mind.  That all the progress I’ve made in the past few months, could be taken away from me once again.  Just like that.  One day I will wake up and there will be the petechiae all over my legs.  The incredible fatigue that was once so encapsulating.  The ache in my joints that left me immobile.  Being dumped on death’s doorstep once again.

Ok.  So I was never on the doorstep.  More like on the block.  But I got the fuck out of there, and I know I would get the fuck out of there again if I had to.  But I’m not going back there.

Ever.

 

 

 

 

 

 

Move Your Feet

 

Not much has been going on since my last treatment of Hyper Cvad.  Well nothing medical.

I started maintenance and everything seems to be ok.  Though I do still feel tired at times, but not the extent of what it once was. ( Go Hemoglobin!)

Other than the fatigue and my liver enzymes being slightly elevated from the oral chemo, (which I was told to stop for a few days to see if they level out or if they need to adjust the dosage.) I’ve been doing pretty good.

Actually really pretty good.

As per previous bitch and whine fests, I am still “cleaning up” cancer’s shit fest, and expect I will be cleaning up for some time.

As fleeting as it is, time is all I have these days.

I’ve been trying to incorporate some work out activity, but I’ve noticed that my legs feel stiffer when I move.  I walk with the gait of a 80 year old who has just had a hip replacement.  The backs of my ankles just feel tight and strained and unwilling to bend to the fluidity that is needed to put one foot in front of the other and walk.  It’s as if all of a sudden I am living out my nightmares of not being able to move.  More specifically, to walk.  Those dreams of feeling like my feet are cemented to the ground and it takes every ounce of will to lift them.  However, in real life I push those damn legs to do what they were evolved to do.  Move.

Because of the intensity and severity of the chemo, lack of bone density and osteoporosis has began to show in my femurs.  A regiment of Vitamin D has been added to my cache of pills I have to take on the daily.

I have been trying to incorporate more physical activities to my day.  Working out specifically or walking, though the dedication and discipline of the work outs are not sticking.  Some days I’m on it….other days I’m just too tired and would much rather lay on the couch reading and eating a box of Milk Duds.

And Milk Duds aren’t doing anything for my ass and thighs.

I’ve been hooping here and there, but nothing of great extent.  My body still feels heavy when I try to perform certain moves.  My legs especially.

Even though I have grown quite distasteful towards my physical appearance, I have decided to join in my troupe’s upcoming burlesque show.  I won’t be doing a hooping number, as I am no where up to par with my hoop abilities, so I will be doing a traditional bumps and grinds number.  I’m actually quite excited about the idea of the number, so I hope I can execute it in a fun, silly and flirty way.

Now if I could just get excited about my stomach, butt & thigh ripples, that would be even awesomer.

 

 

 

Enterococcus faecium

 

It was the wind down to Memorial weekend.  I had been quite busy, pushing myself a bit physically.  I had just assumed my tiredness was due to my over exertion and the probability that my hemoglobin had dropped, but as I sat there with everyone, trying to stay in the moment, something felt off for me.  Just not right.

At first I thought it was the pizza I ate.  It didn’t seem to be agreeing with my stomach.  I got up to use the bathroom and then went and laid down hoping that I could recharge a bit. After a few minutes I rejoined the group, but noticed I felt very, chilled.  I thought it was sort of odd that I kept having continuous shivers, sending my skin into explosions of tiny goosebumps.  No one else looked or seemed to be chilled.

But I have always been sensitive to the slightest movement of air dancing across my skin.

Maybe that was all it was, but the longer I sat there, the more the chill was sinking deeper into my body.

I headed back to the safety of my bed and curled underneath the blankets, trying to trap any heat that may escape.  In my head, I tried to ration all the possibilities to why my body was reacting the way it was.  Was it just shock from pushing myself too much the past three days?  Was this just my body’s way of saying enough?  Was the effects of the pizza the last straw and sending my body into shut down mode?

I took my temperature.  It’s a little high.  Half hour later, it’s still climbing.  I’m praying it doesn’t shoot above 100.3.  Anything over that and it’s a necessary trip to the hospital. I still can’t get warm.

One last check and the thermometer goes off with urgent beeping, informing me that I have crossed the threshold into the range of the 100’s.  101.8 to be exact.

Not good for someone with a compromised immune system.

We are on our way to the ER.

They start me on some generic antibiotic in the Emergency Room, which they kept me on for a few days after being admitted back onto the third floor of the Seidman cancer center. Sending me back to the Cancer floor is typical protocol for anyone in my position.  I had to be monitored and watched.  Make sure the infection didn’t spread or get worse.  It was determined that I had caught some sort of bacterial infection that was in my blood. What it was exactly, they weren’t sure of.  They had to wait for results and run more tests.

For the most part I felt fine.  Fatigued, but that is nothing new for me. However, I could not escape the chills that would grip me in the early morning for the first few days I was there.  It was almost clockwork. Every morning around four in the morning, it would start.  I would shiver and my teeth would chatter.  I would turn the heat of my room up into the 80’s, crawl under all the blankets and shake violently.  I’d contort my body as much as possible, trying to absorb any body heat I was losing back into myself.  Burrowing under the blankets.   Waiting for the cold to pass so I could once again drift off to sleep.

By the time the nurse came in for my morning meds, it felt like a sauna in my room.

In my head, I figured I would be in the hospital five days at the most.  Get the antibiotic, and get out.   But the bacteria couldn’t be so easily identified.  They knew what family it belonged to, but couldn’t pinpoint which strand it was and what it’s particular sensitivities were.  So until they could figure that out and what to send me home on, I was stuck in the hospital.  For most of my stay, I either napped or walked around the floor and grounds.  I can tell you that by day five, I was becoming incredibly bored.  There’s only so much day time T.V. one can stand.

In the meantime, because the infection was in my blood, my PICC line had been compromised.  They felt best that they just pull it out and stick an IV in until they could figure out what to do with me.  I was never so glad to see it gone, but also was quite appreciative of the ease the PICC offered.  Now instead of just effortlessly pulling blood from the PICC, I had to be poked and prodded every time someone needed blood samples.  Which was pretty often.

The first IV blew.  The second one had to be placed near the crook of my arm because no other veins seemed viable or accessible.  Any time I bent my right arm in the slightest it would pinch and burn, so I would have to try and keep it straight as possible.  This made doing some activities cumbersome, mostly because I am right hand dominate.

It turned out that whatever strain of bacteria I had only had a sensitivity to a specific type of antibiotic that had to be administered through IV.   It was decided that I would need to get another PICC line to go home with so I could administer the antibiotic.

Of course the thought of having to get another PICC wasn’t pleasing.  The nurse had a hell of a time getting the damn thing in.  My veins were too small.  The one she did find, closed up.  It’s hard to relax when you have someone poking at you and trying to shove a tube up your arm.  Another one she tried was wrapped in nerves which sent a jolting electric pain down my arm into my fingertips.  The stinging and burning of the lidacain for every attempt.  It wasn’t fun.

I was sent home with my new PICC and home health care came out to show me how to administer the antibiotic.  It really wasn’t that hard.  All you had to do was make sure that you didn’t push all the liquid through at once, timing the plunges with in a two minute span.  By the time I was finished with the antibiotic 9 days later, I began to feel a lot more peppy.   The Dr. even pulled the second PICC out on my last visit.  So as of today, I am PICC free.

I have to say that even though it was a sucky experience in the grand scheme of a sucky event, I have been quite lucky in regards to the lack of infections that could have over taken my body during this whole ordeal.  Too often I read stories of others going through what I am going through, and they seem to be afflicted with some bacteria or another on a continuing basis.  Or the bacteria isn’t responding to the treatment.  Considering that this was only my second time really coming down with anything, I’d have to say that I did pretty good through out this whole shit show that cancer has tried to drag me down into.

I almost feel that cancer was like “Hey!  This girl isn’t going down!”  and tried  sending it’s goons out to scare me into submission.  Break my knee caps so to speak so I’d pay up and give in to it’s whims.

Silly cancer.  It obviously doesn’t know who it’s messing with.  It’s gonna take a lot more than some bacterias to bring this girl down….and even then, I’m not going down with out a fight.

 

 

 

 

 

 

 

 

 

 

 

It’s Just the Drugs Talking…..Right?

 

I have steroids wrecking havoc on my system.  I can’t seem to get away from them.

I would be all done with them except they are the only thing at the moment keeping a tedious and excruciating pain away.

Days later I feel the emotional effects.  Which are just as worse as the pain.

Lose Lose.

I’m tired of the disgust towards my body I am carrying.  It’s becoming obsessive.  And scary.

I thought working out was suppose to help you fee better?  Instead I just feel more depressed and unsure.  I don’t know what the hell I am doing.  How do I know if what I am doing is effective?  How many times do I need to do this?

I just want pizza.

Either way I look at it, restriction comes from somewhere, and some part of my being suffers regardless.  (though typing that and thinking about how I am “suffering” from lack of pizza is quite ludicrous.) But my relationship with food is dangerously close to becoming unhealthy.  Every time I eat, I want to cry and the shame just washes over me.  I feel every calorie turn to fat and settle into the blubbery recesses of my ass.

This is what cancer has done to me.

 

And I hate it’s fucking face.

 

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