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Posts Tagged ‘chemo brain’

Well, if that title doesn’t throw you off a little…I’m not entirely sure what will.

In truth it’s going in about three different directions.  First and foremost, is the fact that I have been terribly absent in my writing for a while and for this, like all the other times, I profusely apologize.  Not just to those who read this for entertainment, but for those who read it to keep up on my health … and also to myself.  I really need to sit down and focus on writing a little bit more.  Second attributes to the absentminded part.  Which I will have to delve into with much more detail further below.  But third, which is actually what I intend on starting out with, is the Spoons.

That’s right, spoons.

Chances are if you have ever heard of the spoon theory you can gauge where this is going.  Now, the spoon theory is in no way something I created, but before reading on in my post I would highly recommend either reading it, listening to it, or watching it at the original author’s website.

Copyright Christine Miseradino

Christine Miserandino’s Spoon Theory

 

Yes, there are some very, very distinct differences between Christine and myself, the most obvious being her having lupus and me having a trump card of cancers.  It doesn’t change the fact that just about everything she states here strikes a chord for me in a way that I’ve never really been able to articulate fully to all but a tiny, tiny handful of people.  So I really hadn’t ever tried.  Having the benefit of, for the most part, not looking sick and being able to function on a visually normal basis has made this possible for me over the last eighteen years.  There are and were a few exceptions.  So what brings it on now, then?

One of those exceptions.  Guess that means it’s story time, right?  I hope you like to read! (I mean, if you’re here I’d hope that’s at least part of the case…because this is going to be a bit long.)

This part is going to have to go all the way back to 1998.  I was pretty normal for a 6’2″ beanpole and I had what I considered to be two very close friends, BFFs as my daughter would call them now.  Thick or thin, lunch, after school, between classes, pretty much any time we could wedge in to hang out together we did.  A terrible trio of slightly warped blondes who defied popularity, loved Metallica and Celtic music, and spent a lot of time making up really bizarre inside jokes that left everybody else around us scratching their heads and passing us wary looks.

One, Jenn (who I will unabashedly name here), and the other who I will simply refer to as ‘3’ for the purpose of privacy.  This doesn’t mask who it is to those who were there in High School with me and it doesn’t really mean to since I’m not telling this story to tarnish her image or drag old dirt out.  It’s simply a story to help understand where I come from and what it is that shaped my outlook on life the first time I had to deal with cancer.

Jenn, who I have mentioned as my ‘Hospital Buddy’ several times in the course of blogging here, started her medical trek a few years before I did.  I don’t envy her dive into it, either.  Getting sick in Middle School is quite possibly the worst time you could do it.  Pre-teens and young teens are often, without a doubt, insensitive, mean, and very insecure.  Particularly to each other.  We’ve all been there and know there are exceptions, but in a big group at that age we’re a pretty judgmental bunch still trying to figure ourselves out, so the search for normalcy is a common struggle.  While popularity is up there on the top of the totem pole for a few, most of us just aimed to keep ourselves from the very bottom, flattened under the weight of our peers.  Hovering somewhere around the middle was where most of us settled.  When you get sick you start slipping.  When you get visibly sick and people hear about it, you go straight to the bottom.  Jenn’s body started to fail her rapidly and the methods taken to bring her body back into full swing made it very well-known to her peers that she was no longer normal in their eyes.  To make a long story short, she lost a lot of friends.  It’s devastating enough going through something that paints you as abnormal at any age, but at that age when so many are still trying to maintain their self-image it slams as a double blow. She maintained very precious few good friends. Those that had extraordinary maturity for that age and defied social stigma to remain friends with her in her time of need helped her through those years and beyond.

And, in a way, also helped me.

About a year before my own initial cancer diagnosis Jenn, 3 and I developed what I considered to be a very close bond.  The three of us were pretty much against the more popular crowd, which, by the time you’re in High School pops you into one of those cliques.  Ours drifted somewhere between the Music/Drama/Art crowd including the ever-popular 90s flannels tied around our waists  and ‘goth’ mentality without the stereotypical heavy black makeup.  Not to mention we giggled too much to be outwardly goth, never did drugs so we didn’t really fit into the stoner crowd (though most of our friends resided there), and spent more time drawing or writing up our own stories to be too worried about what the rest of our High School thought of us.  Considering our graduating class was over 700 in size … this wasn’t really too hard to do.  Staying away from the jocks and the popular kids who we weren’t too fond of was actually a pretty easy feat and we liked it that way.

Near the end of my sophomore year, however, our bond was put to the test in a way that was completely out of our control.  I was diagnosed with Hodgkin’s Lymphoma shortly after my 16th birthday.

To paint a picture, I went from relatively chipper to pretty dour right off the bat.  I didn’t even know what Hodgkin’s Lymphoma was when the doctor gave me the diagnosis.  What didn’t help is that there was a good month and a half of tests, biopsies, antibiotics and the like just to diagnose what the heck I had, so it started adding anxiety to my already insecure teenage attitude.  When the bridge between ‘Hodgkin’s Lymphoma’ and ‘Cancer’ was finally connected … my world shattered.  I didn’t feel sick.  I didn’t look sick.  The word cancer back then to me meant certain death, too, since that’s what you do when you have cancer…right?  Lose your hair, end up on a bed stick-thin, and die.  I was sixteen and facing the most amazing trip to England that I had been fundraising for with Girl Scouts for two years and now I had not one, not two, but a slew of doctors from several different hospitals all telling me that I shouldn’t go.  I had two weeks between diagnosis and England and the stress of everything was beginning to make me crack.  I didn’t want to die.  Two years of planning, fundraising, preparing…

So I did what any stubborn sixteen year old would do.  I went to England.

I should point out that my mother and I did some pretty heavy negotiating and agreed to get all of my pre-chemo testing done before I left.  Which also put me smack-dab into the chemo chair the day after my plane landed back in town.

All the while I started to see a shift in the way both Jenn and 3 were treating me.  While Jenn was on the phone with me immediately after chatting about the diagnosis, 3 didn’t seem sure what to do.  We were both in that boat in truth, as I was clueless as to what this would bring.  I also can’t blame her for taking a step back to try to figure things out.  One of her closest friends had been diagnosed with cancer and she had pretty much the same experience with the disease that I did.  None.  I believe she cared, but she didn’t know how to handle it.  She stuck around, however, through the entirety of my treatments.  3 was a pretty positive force, but I will never know for certain if it was because of Jenn’s overwhelming support that made her feel it was something she had to do…or if she truly wanted to stick around but the general ‘illness atmosphere’ put her into a very deep discomfort zone.  Because she stayed, however, she and Jenn both got to see every brutal detail of what cancer brought to the table.  I didn’t spare them details when we’d talk because those two were the only peers I could talk to about it.  Or so I thought.  Jenn took it in stride because she had been there, she was living this with a different disease but the experiences were all too familiar to her.  Even some of our medications were the same.  We tried to be inclusive of 3, but I don’t think we ever saw that she might have felt left out, uncomfortable…or just unsure how to break away without hurting me when I was obviously at a pretty bad low in my life.  Where Jenn would come to doctor appointments, 3 would start to opt out.  Hanging out at one of our houses?  More often than not it happened at my place or Jenn’s, but only sporadically at 3’s.  Attending Girl Scout meetings?  Jenn kept coming, 3 eventually dropped after missing most of the meetings.  She stuck it out admirably until maybe two to three months after my last chemotherapy and I was announced in remission.

Because of what I thought was unwavering support from both of them at the time, I was able to pull my head out of where the sun didn’t shine about halfway through my treatments.  My negativity slowly lifted towards the optimistic, but not before it had me alienated by quite a few people outside of our circle of friends.  Each lost friendship hurt, but I had two friends that I could count on…and they kept me going.  My attitude improved, my outlook improved.  Hand in hand with this I began to mature in a way that only a life-threatening situation can really do to a teenager.  My perspective on life changed, the way I treated people changed, and I began to grow in confidence that there was a light at the end of the tunnel.  I mean, sure this was a poor situation, but it didn’t mean I was done for.  As far as I could see?  I had beaten this.  I was ready to move on in life with a few ugly setbacks, but there was nothing that could hold me back.

Which is why it was so confusing for me at the time, why it is she chose when things were getting better to break away.  Not to mention the breaking away wasn’t in a pleasant way at all.  We’re talking a lengthy letter pretty much expressing all the anger, resentment, hurt feelings she’d likely been keeping bottled up for near a year delivered via e-mail and followed by an avoidance that would’ve put a four block perimeter between us in even that crowded school.  The type of letter that delivers so much articulate pain all at once that you just don’t come back from it.  There was no room for reconciliation, no room for discussion, and a very clear message that there was no desire for it.  Only a permanence that bordered on raw pain that came completely out of left field for not only me, but Jenn as well.

I might have been a pretty mature sixteen year old, but I don’t think there’s a teen out there that would take a hit like that without responding in one form or another.  For Jenn it was silence, avoidance, discomfort in regards to 3’s letter.  She had never been confrontational in High School, and she had been blind-sided into shock.  For me, however, I still had a bit of teen-rage in reserve and 3 lit a fire that only turned into slamming the nail in the coffin of our friendship.  She gave me an outlet for my anger and it simply deteriorated from there.  To refer to the Lion King, our trio went down to two in one e-mail.  Even years later Jenn and I have looked back on how we would’ve done things differently, but have come up empty-handed.  There are just some things that can’t be truly rectified I suppose.  After all of it I’m not angry at her … nor am I angry at myself or Jenn or how it happened.  I simply learned the hard way on who, where, when, and how to share my cancer history and to let people know up front so there were never any surprises.

I’ve been complimented on my attitude about handling cancer, how I go on without bemoaning …I’ve amazed doctors with my fortitude and how I take things in stride.  Despite fighting cancer for 18 years I’m still not rolling over, it’s just not in me.  Call it stubborn, I’ll take that.  Call me a fighter?  Sure, I mean a good stiff wind might knock me over, but we’ll go with that.  I’d like to think more along the lines of having goals that I’m not really bothering to let my disability interrupt.

Yep.  I just broke down and called it a disability.  Technically with the side effects I’ve been going through with lung cancer I should have been officially calling it that for a good four years now.  Complete with a roller-derby wheel chair jockey handicapped placard in my car.

rawimage

Seriously, though. This guy’s rockin’ it.

So why finally the change?    My lung cancer has remained relatively stable for about a year now, a little growth, but nothing that’s been overly debilitating in my book.  Key part of that, ‘in my book’.   This is something that Jenn and I both understand a little too well.  We take on a lot outside of our personal lives, but it comes at a cost.  Early nights, no drinking or smoking, no real social lives outside of what we do during the day.  Lots of medication and planning we have to do in order to have a somewhat normal life.  Sometimes there are days where we have lots of energy … spoons in plenty.  Other days we have little to none.  Passing out for hours, barely managing to go pick up my kids or for her to get to the store or get her cats to the vet.  Most days we have Skype open simply sitting in silence and understand that the other may not be capable of being any sort of social with people who don’t understand it.  There’s never been a way we could explain why we can’t drop everything to do something social without it making people feel like we’re brushing them off or excluding them.  How each and every outing requires planning right down to when to take medications, when those medications will hit us, how much we can eat, when to eat, what to eat, if we should do anything before hand.  This may seem like a lot of planning … but after the amount of time we’ve been doing it?  Like any change in your lifestyle it will eventually become routine.

There have been hiccups along the way, scares that make us step back and realize that we’re probably not as infallible as we’d like to think that we are.  Liver and kidney transplants for her, flare ups in new types of cancer for me.  Surgeries.  Treatments.  ER visits.  Not to mention all the side-effects and a pharmacy of medication that comes with it.

All of this is the stuff that people just don’t see and by no fault of their own do they understand it.  Even as up front and open about our situations as we are, Jenn and I still have never really been able to articulate what it’s like to them.  But we’ve been fine with it and have coped…and we still do.

Back in November, on a whim and a few dizzy spells, my Oncologist brought up the idea of doing a brain MRI just to rule out anything that might be attributing to them.  I wasn’t opposed, especially if you consider the fact that in all of my years I’ve never actually had my head scanned.  A small part of me may have just wanted to see what my head looked like.   Then there was that little nagging part that wanted to be sure that the dizzy spells weren’t related to another issue.  My priorities might be a little weird, but I digress.

unnamed

Well, it turns out I can’t really do anything normally. Lookie, lookie what they found!

Hop skip and a jump and we’re looking at what we call cyberknife or gammaknife radiation.  By comparison to my other cancers, my Radiation Oncologist was quite positive that this little ugly lesion would be the easiest cancer of mine to treat.  90% chance of success (I don’t think I’ve ever been given such a positive percentage prognosis quite so readily, either!).    Two months of waiting, insurance approval, too many steroids in order to keep swelling down, and I was ready to start up my treatment.  Throw in a fancy facial mask to keep my head still and by January 29th I was done with my one and only treatment.

Only to have the treatment (they presume) cause a grand mal seizure two days later in the parking lot of a local strip mall while I was purchasing Girl Scout supplies for our troop.  I was in my car, I had just parked…and then nothing.  I remember absolutely nothing.  Everything I have that day is told second-hand from those around me.  I was found slumped over my steering wheel.  They had to break the passenger window to get me out for the EMTs.   The officer who helped me stayed with my car until family could arrive to take it (because of course I had to park somewhere that theft would’ve been a real possibility).  Not only how I fought the EMTs (…this one still baffles me), but I also ripped out one of my IVs for some unknown reason.  I had bruises all up and down my arms, medication that could sedate a horse coursing through my system and words like hospice, end of life treatment, brain damage, never driving again, always needing care were being tossed around like popcorn popping without a lid on a hot stove.

For the first time in my life I was actually terrified…and I let it show.  I had to let go of control, let others step in to take on jobs I’d easily done in the past.  I was slurring speech due to medication, spaced out, exhausted, holes in my memory that I was filling with the wrong memories from weeks and even years before.

My body may have been a bit of a failure but my mind had always been there.  Sometimes a bit flighty and buzzing but always there.  Now it was questioned not only by myself, but others.  Despite having a month of recovery there are still fuzzy spots in my memory over the last month, but I am improving.  I’m getting better.  Things aren’t dire anymore, at least not to me.  I’ve had to adjust how I approach things, make plans that I should’ve done before, write everything down.  My independence has been limited, but not erased, and in five months I’ll be able to drive again.  I’ve had no seizures since then and today I’ll even find out if I can start to get off these steroids that are eating at my physical mobility and making me walk with a cane.

But even in all of this, I realized through my years of experience when to recognize when those around me get that look.  If you’ve been through this sort of thing, you know it.  You can see the distancing, the look of pity or sorrow.  The way some of the doctors look at you as a hopeless case but just don’t know how to tell you, especially when they don’t know you outside of the three-inch binder full of your medical history.  How even years away from High School we recognize those who still struggle dealing with mortality and those who face it daily a bit with trepidation.  Perhaps it reminds them of our own limited time.  Maybe they’ve dealt with it recently and just cannot put themselves through it again.  No way of dealing with this is wrong, but if there was a way to make it a bit less scary then I had to try.  I knew that I was going to have people draw back, whether they realized it or not, and I couldn’t let that happen the way it did back in High School.  I wouldn’t let that happen again.

This led to a very long discussion with Jenn and re-visiting the Spoon Theory, something we’d seen a few months previous but never really had a use for since we’d had each other. But we can no longer just isolate ourselves.  I especially can’t with my kids, they might be used to my cancer and see it as a normalcy in their lives … but their friends won’t.  Their friends won’t understand why I can’t hold a sleepover.  Why I can’t drive to take them places or even leave them with people who don’t understand and know my situation.  I had to find a way to communicate this, and the only person I could figure out who to help me get there was Jenn.

Let me just point out that deciding to share her story…?  It’s helped a lot.  Like I wrote earlier, not everything is perfectly lined up, but it is the closest thing either of us have ever had to accurately describe our unique situation.  For the first time in a long time those faces of fear and trepidation turned into looks of understanding.  I don’t have to go into lengthy explanations now, I just let them know ‘I’m out of spoons’ and there’s no questions asked.  My kids aren’t being left out, I’m not feeling left behind, and people understand that I am recovering, even if my normal isn’t the same normal that they thought it might have been.  But most importantly they know the importance and weight behind my words when I tell them I have spoons for them.  That not only that, but they are one of my spoons.  A message I wish that I could have conveyed to 3 so many years ago, but never had a way to do so.

A mistake I will never, ever make again.

 

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There comes a time when you’re a blogger (or me.  Really it’s more likely if you’re anything like me, so let’s go with that analogy) that you end up running dry and sapped of creativity and end up staring blankly for hours when it comes time to write anything.  I have gone near two years with little to no postings, and I do apologize for that (to all five of you reading this, of course).   I need to rectify this.  Especially since coming online and seeing a notification from wordpress saying “Your blog stats are booming!” only to mouse over the stats to see that only 12 page views warranted this alert.

I should do something about that.

The fact is, when I sit down to write about my issues with cancer I tend to mull a bit too much.  How can this be  helpful?  Have I already written about this before?  Why is it so quiet in here?  What are my kids getting into that has them so quiet?  Did they go outside? I don’t remember sending them outside…

And so forth.

It’s not that I have a lack of things to say, but it generally boils down to me wondering, truly, if what I have to say really hasn’t been said before.  While the answer to that is an undeniable yes (as is the case with most creative endeavors), I can at least say that nobody else says it in my words and with my personal experiences.

But my life isn’t all about cancer.  I want to show people that there can and is life beyond a cancer diagnosis, despite what most social implications tell us.  In fact, I can say without blinking that most people I’ve known that have gone through cancer have survived.  This isn’t exactly an educated and highly studied statistic.  It’s my personal experience.  One that I’m happy to talk about.  However it’s not the only thing I want to talk about, and as per some of my previous posts I do have other things that make me unique.  Oddly tall, unabashed lifetime Girl Scout, artist, and, according to my mother, a chef.

I can see you laughing there behind your screen, but don’t worry, the chef part made me laugh, too.

While I don’t consider myself to be on par enough to go compete on shows like Master Chef or The Taste I do think that I do a relatively decent job at keeping my husband and kids happily fed.  My children, also, aren’t nearly as picky as others seem to be.  I cannot begin to tell you how many times that I’ve had employees in the checkout lane marvel at how my kids’ snacks vary from carrots to celery, how they’ll eat broccoli without batting an eye, and absolutely adore the peas my husband serves with his casseroles.  Now, I’m not going to peter off into a spiel about my kids amazingness — that would paint a horribly false picture and probably also get boring.  We all have faults and my kids are no exceptions.  But every mom has to have something to brag about now and then.

My daughter, on that note, went on strike at the tender age of one and a half when it came to eating anything green.  I am, admittedly, a bit warped in my solutions to things.  So when she began pushing her peas away and opting only to eat her cooked carrots and noodles, I decided to take action.  I purchased the colored pasta and only gave her the green stuff.  Rainbow colored goldfish crackers?  She got the green ones.  Mashed potatoes?  Green food coloring.  Do I need to go on?  My daughter was only given the option of green food (except for meat.  I didn’t want to try and figure out how to dye meat and …really.  Green meat.  Ew.)  for nearly six months before she decided that she’d had enough…and began to voluntarily eat her peas once more.

I’ll consider that a small notch on my belt of triumphant mommy moments.

Now that school has started up again (my house is quiet for a good reason.  I’m still not adjusted to this after summer.) I’ve decided to start experimenting around with cooking once more.  There have been frequent times when I’ve been asked for recipes, so here is where I will post them.  Written in a way that hopefully doesn’t bore you to tears.  (I’m looking at you, Betty Crocker.)

Does this mean I’ll be stopping writing about cancer?  Of course not.  My tall tales will still appear more sporadically, too.  I’m just adding in another part of my life to a blog that’s, well, about my life.  Hopefully this will prompt me to start writing once again, as I’ve begun to miss the overly obnoxious clacking of my outdated keyboard.   In any case, I hope you stick around (all five of you.  Or four.  There might be a slim chance of six.  I digress.) and see what I manage to pull out of nowhere just to give you something to read.

Cheers!

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