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.

 

 

 

 

 

 

 

 

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.

 

 

 

The Goings On.

Today I embark on round five of the chemo.   Once again my initial date for admittance was pushed back due to my counts being low, so I got the weekend off so to speak.

I learned that the type of treatment of chemo they have me on is called Hyper CVAD. It switches between two chemo regimens. Since this regimen is the odd number treatment it will be the following drugs:

Hyper is short for hyperfractionated. It means you have more than one treatment of the same drug given in a day.

Schedule A (cycles 1, 3, 5 and 7)
On the first day your nurse gives you two separate drips of cyclophosphamide 12 hours apart. They repeat this again on days two and three of treatment, so you have six doses in total. You’ll be given fluids through a drip before and after the cyclophosphamide. You may also be given a drug called mesna to help prevent bladder irritation. You start a course of dexamethasone tablets on day one, which you take for four days.
On day four you have vincristine and doxorubicin as a drip. You can usually go home the day after it finishes.
On day eleven you have vincristine again, usually in the chemotherapy day unit. You also start another four-day course of dexamethasone tablets (days 11-14).
You then have no treatment for the next week. This completes a cycle of Hyper-CVAD. Your next cycle will be Schedule B.

 

The last time I had the Schedule A I puked for two days? (Time becomes so relative when you are dry heaving.) Something I hadn’t experienced during the first go around of this.

However I have been feeling pretty good up to a point and hope that I will make it through Schedule  A, Round 5 with flying colors.

There is a second part to this chemo regiment as well.  Schedule B, or as I like to call them, The evens, which is what I just finished up about two and a half weeks ago.

Schedule B (cycles 2, 4, 6 and 8)

On the first day your nurse gives you methotrexate as a drip. The next day you usually start having a drug called folinic acid (Leucovorin) as a drip to reduce the side effects of methotrexate. You have it regularly with fluids until the methotrexate is out of your system.
On the second day and on the third day you have cytarabine as a drip given twice – 12 hours apart. You can usually go home after this if you are well enough and your methotrexate levels are okay. You then have no treatment for the next 18 days. This completes another cycle of Hyper-CVAD. Your next cycle will be schedule A again.
If you are having cytarabine and methotrexate by injection into the spinal fluid, your doctor or nurse will explain more about this. You usually have these on different days from the rest of your chemotherapy treatment.

My last cycle of chemo was an even (and halfway point…Hooray!)

I didn’t experience much of the side effects in the hospital during my last even round.  I had a headache before the chemo started and that was about it.

It’s when they start pulling the Methotrexate out of my body that makes me a bit nutty.  They like to see that you have gotten rid of most the Methotrexate before they send you home, and then have you continue to take the Leucovorin at home to pull out any remainder or residuals if you will.  This is when I feel like I am out my mind, cause I am on my own and don’t have the luxuries of fluids and sweet drugs dripping into my I.V.

At home I have to take 4 doses of the Leucovorin every six hours.  For some reason I get incredibly anxious and my mind starts racing about all the things I “think” I should be doing.  For instance, cleaning out the freezer.  Or reorganizing my underwear drawer.  The thoughts are almost imperative and gnawing, yet I lack the energy to really do anything.  So I sit and agonize over how I am not a productive person.

I’m not so much sure it’s the Leucovorin, as much as it’s the Methotrexlate.  Methotrexate is some serious stuff.  Once I finish up the Leucovorin, I tend to feel a lot better.  Mentally and emotionally.  Methotrexlate has the tendency to take me to some dark places.  Though for Round Four, I handled it way better than I did in Round two.

Round two I felt like I was dying.  I was so fatigued.  I also wasn’t taking the Leucovorin like I was suppose to that first day of being home.

In fact I was quite surprised how well I did with my last Even round, because those are the rounds that are the most taxing and difficult and I find myself feeling depressed and bitter over the quality of life and time that cancer has robbed from me deeply.

But this  time around I was more hip to the do’s and don’ts and was chugging along quite nicely until a few days ago when the lymph node right on the left side of the back of my head started to act up.  It wasn’t swollen, just very sore…and throbbing.  Made sleeping very difficult and because I am a side sleeper it made no difference to which side I laid on, it would just throb.  Sleep of course was interrupted, it hurt to sit up or lay down, and once again, it baffled my Dr, who could not give a good clear explanation, other than this is probably just a side effect of chemo, and you can never say with certainty why shit happens the way it does and oh hey, didn’t this happen before in a different area but once you started the chemo that round hadn’t it gone away cause of the steroids?  So maybe that will also be the case this time.

In the meantime he prescribed some lidocaine gel to help with the pain, but once applied…I felt nothing.  And I don”t mean nothing as in the lidocaine doing its job numbing up the joint….er or in this case, the lymph node.  I mean I didn’t feel the lidocaine work at all.  No tinglies…  No coolness… No numbness….Nothing.  Upon further inspection of the the drug information I read where it states this medication is ineffective on intact skin.  So a lot of good that did me.  Thanks Doc.

Luckily I had some steroids left over from a previous round, took a small dose of that and that seemed to do the trick.  You ask me I think the node was just inflamed for some dumb reason.  Maybe it sucks or is slow going at draining all the yuck from my body.  Maybe its just super sensitive to the chemo.

It’s amazing how in tune you become with your body during something like this.

Anyways where am I going with this?  I don’t know.  But there is all that jazz.

On the plus, it was figured out why I have been so fatigued and winded when I move about.  I am still anemic, so the Dr. upped my need for blood products.  Anytime I fall under my newly fixed level, I gets the blood, and let me tell you… It has made a world of difference. I feel like a vampire feeding for the first time in ages.   I have been able to get out a little bit more.  I’ve been able to do a little bit more around the house (like clean out the freezer and organize my underwear drawer.) and I even picked up my hoop here and there.  (which i must add how weak my leg muscles have become.  I can hardly shimmy up from my knees…if I can get the hoop around my knees to begin with.)

I also had another bone marrow biopsy ( not fun) but the results came back showing no cancer cells.  So it seems the chemo is doing it’s thing, and technically I am cancer “free” for now.  Of course the Dr’s won’t come out and say that I am in full remission until the treatments are done.  So kicking cancer in its dick is being accomplished.

I’m hoping, now knowing how to combat these chemo side effects a little more efficiently, that the rest of the treatments and recovery time will go by a bit smoother.  And after this treatment, there will only be 3 more left….and then two…and then none!

I know I am redundant in saying this, but I am quite antsy  in returning to a “normal” life.

And that’s not even the Metotrexlate talking.

 

 

 

 

 

 

 

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.

 

Previous Older Entries Next Newer Entries