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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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.

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.

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

 

More Molecules Than Air

I’m fucking tired.

There is nothing I would love more at this moment than to drift off to tranquil sleep,but that’s not going to happen.  Not tonight.

Not even the ativan I took earlier is able to gently coax and whisper for my mind and body to relax and succumb to it’s serene suggestives.

My body is beaten and battered and my head is constantly going.   It seems I can only shut one off at a time.   If I can get my body to relax, then my head starts fixating on all the mundane cacophony of white noise dribble from the day or days to come.  If I can get my head to shut up, then my body ends up twitching, jolting itself awake with aches.  Groaning for that one spot, position where it can find comfortable respite.

Fighting cancer is hard.   And I’m angry, because even when I am done fighting, I’ll still have to clean up cancer’s shit.  Which  just means even more work.

I’m overwhelmed by the feeling of being robbed by this shitty disease, and let’s face it, that’s what cancer does.  It ransacks.

It creeps into every facet of your life placing conditions and ripping things apart.

You can only go so long, bright eyed and bushy tailed, before you start wanting to punch everything in the face.

 

 

 

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