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?

 

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.

 

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.

 

 

 

 

 

 

 

 

Waiting Game

 

Time.

It’s all I seem to have.  Or does it have me?

The thing about having cancer is time.  It robs you of it.

Everything is a wait game.  Wait to see if the chemo is working.  Wait for the nausea to stop.  Wait for the headaches to go away.  Wait for the results of such and such scan.  Wait to see what the Dr’s say.  Wait for the chemo to clear your body.  Wait for the next phase of treatment.  Wait for the cancer to be gone.  Wait wait wait wait.

Meanwhile, I feel life is passing me by.

It’s as if I am stuck in a holding cell with windows where I can peer out into the world but can’t really be a part of.

So many events happening that I would like to be a part of.  So many activities that I would like to join in on.  So many places I would love to go to.

Yet I can’t.  Or at times, should’t.  I’m to fatigued or  my white blood cell count is so low I become neutropenic, and large crowds are to be avoided.

I try not  to be bitter about my circumstances.  I am extremely blessed to have the support system I have and I seem to be kicking this in it’s stupid fuck face, but at times I find myself extremely frustrated that I can’t do more.

So I wait.

 

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