Switching It Up & Changing Plans

Even after my several years of experience with cancer it never ceases to amaze me how oblivious to the symptoms I can be.  Especially when they’re being waved in front of my face like a checkered flag.  I’ll get a bit more into that further on.  Otherwise I also wrapped up my chemotherapy sessions.  This, of course, means that I get the round of CT scans and MRIs followed by the traditional ‘wait and see’ phase that follows.  A full torso/abdomen checkup and a brain scan to cross our T’s and dot our I’s.  Last Thursday was the CT scan, Monday was the MRI.  I’m so very accustomed to these, though, that I choose to not worry and panic over the wait for results.  See, going through cancer you have to wait…a lot.  Blood tests, scans, samples from tumors and biopsies.  When I first started this almost twenty years ago the wait was sometimes two weeks to a month and it was absolutely excruciating.  Sometimes it’d be even longer.  Presently it’s typically a week at the most, sometimes shorter than that if my doctor wants to fill me in and move me through the process of things quicker.  He’s quite good at keeping me in the loop, even if it means Sunday night phone calls

So instead of fretting I move forward with my plans.

On Saturday, before my son set off to summer camp for the first time, we got to meet and partially pay for our newest member of the family.  She is a beautiful Great Dane that we’ve dubbed ‘Anora’.  All black save for a few white specs here and there and has, to my delight, dubbed me as hers.  If I sit in her vicinity she is my shadow, on my feet curled up,  or snuggling into my lap.  If I’m not careful I will have an over-sized lap dog in a year.  Oddly enough, I’m not too distraught about this.

Anora snoozin’ it up at my feet. Between her crate and my shadow she has also adopted the space under the Japanese Maple in the back yard as her outside ‘den’.

Before picking up our newest addition, legs and all (and her legs are exceptionally long!), Jenn and I took my youngest minion to the coast.  It was…admittedly exhausting but at the same time lots of fun.  Due to my recent need for pain killers I’ve formed the unfortunate habit of napping on car rides as the medication takes hold.  Luckily my daughter is very good at filling the quiet with song and ideas and kept Jenn awake on the ride home with her chatter.  It’s odd for me to be the passenger still.  We’ve been close friends since we were fifteen and it never occurred to me that over the hundreds of times we’ve visited the coast that Jenn had never been in the driver’s seat.  It was almost always me or our friend Leah.  The fact that I can’t just hop into my car and drive still feels surreal, something I’m not sure I’ll ever get used to.

That leads to the whole need for pain killers thing.  Back in April I had a run in with pneumonia that left a lot of water pressed between my chest wall and my lung.  The pain was pretty bad, but it slowly started getting worse over the few weeks after I left the hospital.  Both my husband and I figured it was the fluid not draining, as it wasn’t getting better like a rib break or a muscle sprain would.  Because of so many possible factors that could contribute to chest pain for me, my doctor and I agreed to hold off on a scan until after my latest chemotherapy treatment.  In the meantime the pain went from my shoulder blade and then down into the chest right under the bra.  Sometimes a constant ache, other times sharp stabs, but it was always present.  Sleeping comfortably has become near impossible.  So hydrocodone was what I was given to hold off until we could properly diagnose the issue.  I regret to say I need it daily now.  There’s no shame in having to take the pain medication, I know this.  I just detest having to rely on it with such frequency.  The alternative though … not so pretty.  I’m not the kindest person when I’m in pain, especially when the pain won’t go away.  I say things, snap things…on those closest to me when I’m in pain because all I can think about is how to make the pain go away.   Nobody around me deserves that.  So I’ll buck up, kick my pride in the butt, and take the medication. I hate it, but I hate how pain makes me act so ugly a lot more.

There was also a minor incident about six weeks ago where I had a major dizzy spell while waiting for my daughter and husband to get their hair cut.  It was briefly terrifying, giving me the impression at the time that I was going to experience a major seizure in the middle of the waiting room in front of several kids.  The only seizure I’ve ever had, back in February, I don’t recall anything from…so I had no idea what to expect if I started experiencing one.  Vertigo, dizziness, imbalance, my vision going wonky and my jaw locking up on one side.  I sat there, trying to carry on conversation with the lady next to me to help distract me from the symptoms…until I noticed my speech was starting to slur.  She noticed it, too, her expression going from friendly to confused…to a little concerned.  We fell into silence for a few moments as the symptoms passed and I was left with a bit of dizziness at best.   I fumbled through grocery shopping and then shortly after we took a quick trip to the ER to double check.  Nothing came back to mark that I’d had a stroke, seizure, or anything of the like.  The official diagnosis was, I believe, “It’s a thing…that happened?”

Probably one of my favorite medical summaries so far, one that had us joking with the doctor and nurses for a few minutes.  Is it weird that I get along so easily with hospital staff?

Do we really need to answer that question?

Ehh…likely not.

I’ve had a few speech problems since then, but most I had attributed to the pain medication.  Hydrocodone or any powerful pain medication tends to knock me out pretty quickly, so it wasn’t a surprise at all that I’d start sounding mildly drunk after taking it.

However, I really should start paying attention to my symptoms more.  My body, while I pride myself on knowing it really well, loves to throw curve balls at me.  I know better than to expect anything ‘textbook’ (my cyberknife therapy) to turn out as such.  I try not to be paranoid, but every time I turn around cancer finds a new and not so entertaining way of keeping me on my toes.

Now I know that I posted the picture of my first brain tumor back earlier in the year, possibly at the end of last year.  That’s right.  I said first.  It is my pleasure to say that the cyberknife treatment worked beautifully on that first tumor and it is now a bit of dead tissue shaped like a tiny jelly bean that is slowly fading away.  As it fades I’ve also noticed any vision problems I was having have also done the same.  Unfortunately it decided to invite a few more unwanted guests.

This one apparently decided it had to be bigger than the last. Really, I could do without the internal competition. As if my body would listen, though.

Yeah, that’s one of three new tumors in my brain that have popped up.  Obviously the biggest.  When I asked what sort of side effects might happen with a tumor in that location, the doctor swiveled in his chair to look me over and asked, “Have you had any slurred speech or balance problems?”

Hindsight is always 20/20.  The good news for these is that they can be treated in the same way as the last, but we won’t be taking me off the steroids quite so quickly this time while we’re doing it.  My doctors came to the conclusion that halving my steroid dosage at the same time I had my cyberknife therapy last time was likely what caused my grand mal seizure.  As much as I dislike steroids…I think avoiding a seizure might be the dominant priority here.  This does mean no driving for a bit longer.  Who knows, maybe it’ll be a good Christmas present at this rate?  One can hope.  My van is getting pretty dusty and is in dire need of some cleaning.

As for the rest of the scan?  I can’t say it’s good.  Sometimes pictures are worth a thousand words, so let’s start with that…

OK so a picture with scribbles in neon is worth a thousand words. Same idea, right?

Unfortunately the cancer has metastasized considerably.  There’s no way to pretty it up.  This means my current chemotherapy isn’t working and I will be facing radiation again.  Those who have been following my blog or that know me will realize that localized radiation is likely what got me into this mess in the first place.  We’ve surmised that it caused the breast cancer and the lung cancer even though it completely destroyed my Hodgkin’s Lymphoma.  But we’ve tried immunotherapy and just about every chemotherapy we can fathom.  Some have slowed it, some temporarily got rid of it…but every time you go through chemo your body starts to build up a resistance to it.  You can’t often do a treatment again after you stop, so our options are pretty limited.  Luckily the liver and kidneys are areas that haven’t been radiated before on my body.  While they are a cause for concern, it’s considerably less so than what’s going on inside my head.  My body won’t be worth a damn if my head no longer functions.  So…head first, and then the body.  I will be in months worth of radiation treatment at this rate, but it’s to be expected.

This leads to a question that some have asked me.  Have I been given a time?  No.  I don’t ask for one.  These therapies will extend my life for a while, but there’s no guarantee that they will rid me of the cancer.  Especially if you consider that my upper right lung is riddled with tumors (and not fluid anymore at all).  Those we’re not even sure what to do with just yet.

There is one chemotherapy that my insurance company has denied more than once, stating each time that we need to look into a chemotherapy that is meant for lung cancer treatment.  It doesn’t seem to matter that each time we’ve pointed out that we have done these therapies and that they aren’t working.  The beautiful picture up above dictates that pretty clearly.  You would think it’d be obvious, but when companies just look at the paperwork and not the person it’s hard to get the message through.  We’ve exhausted just about every chemo out there.

So now I have a court date with a lawyer in August.  I have the option to not show as it’s presented to the insurance board…but I plan on paying them a visit.  I am not a frail thing, ready to die.  I have two kids, a husband, a puppy and friends and family that need me.  I have a strong will to live and desire to at the very least see my kids graduate from high school.   If that means I have to show up ready to lay my situation down in vivid detail in front of a panel of strangers then I will do it.  In my experience showing up in person almost always gets the point across much more clearly than on paper.  I will not be written off as an unfortunate case or a sad story.

Don’t get me wrong though, I know this cancer will kill me eventually.  Ever since lung cancer started rearing it’s head repeatedly I’ve not since been under the delusion that I would live a long and drawn out life.  In truth I’m pretty sure I’ll never see my 50th birthday, the same age that my aunt died.  The same age my sister’s mom died.  Their deaths described as tragic and how they went too young at an age that I am almost one hundred percent certain I will never see.

That doesn’t mean I give up, though.  I have no intention of letting cancer dictate when I go for as long as I can help it.

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A little time off

Off week.

That happy time where you’re in between cycles of chemotherapy.  When you get that chance to have a little recovery from the medication you’ve been hammering your body with steadily for months.  That time that you squeeze in every bit of social activity that you can without overdoing it because the last thing you want is to crash during the only week you have a little freedom.  Vacations are planned for off week.  Social get-togethers are planned for off week.  Chores you’ve desperately been putting off are reserved for off week.

It may sound a bit like I’m waxing poetic about off week, but really…it’s a whole week without chemotherapy.  Not that I dislike my nurses or anything, but as they say;  “We love you, but we don’t want to see you again.”  This is the week I have a little more energy and I feel a little more normal.

Or it’s the week that my children bring home some sort of elementary school plague and I end up, ironically, sick on the only days I’m supposed to be recovering.

And yes…yes it’s happened several times.

This time around off week is a grand total of at least two weeks.  This isn’t too unusual, as I’m due for a CT scan to see if this chemo is even working.  We’re hoping for stable.  We’re also hoping to see what might be causing the chest pain I’ve been experiencing since early April.  When you have such a laundry list of things that could be causing the symptoms it can be hard to diagnose.  This time around we’re waiting on the CT scan, though, which you also tend to want to limit exposure to because…oh right, it’s one of those cures/diagnostic tools that can also cause cancer!  Sometimes I wonder if the human race just really likes shooting itself in the foot in that regard.   Yet I’ll find out if it’s broken ribs, bruised ribs, torn or sprained muscles, fluid pressing against my chest wall (there was some stuck between the lung and chest wall in the last CT scan), or the cancer itself pressing against my rib cage.  Maybe it’s scar tissue, that seems to be the bane of my existence quite frequently.

So, again, during my beloved off week I also get to play the waiting game.  Everybody knows the waiting game, but it seems to be a constant for cancer patients.  One thing we share in common with this widely varied disease.  You scan and then you wait for results.  Has it spread?  Has it gotten smaller?  Is it simply holding steady?  Is it causing problems with the rest of how the body is functioning? Most of the time only a CT or a PET scan can tell.  I wish a simple X-Ray could, but the detail needed to see most cancers isn’t going to be picked up with a quick run through an X-ray I’m afraid.

Though this does also mean I get two off weeks.   Granted one of them has a few doctor appointments to follow up on scans but…

It means I get to go to the beach.

Now if only the weather would stop pretending it’s early April.  That’d be awesome.

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When life gives you lemons…

Really, I want to know who came up with that.

Especially the followup of ‘make lemonade’ part.  This would thrill my husband and son, as are both avid lemonade enthusiasts.  Me?  The one with the ample supply of lemons?  I can’t imagine wanting to risk diabetes just from the sugar alone you’ll have to throw into the lemon juice to make it a drinkable treat.  Perhaps not Kool-Aid recipe sugar dosage (though I’ve seen some recipes come close…), but lemons have a pretty good chunk of natural sugar that you add into the mix.  Nice for one glass or two.  But if life is throwing a peak harvest California lemon orchard at you there’s only so much lemonade you can really handle.

I mean…does it have to be lemonade?  What about a nice meringue?    Lemon bars?  Cheesecake?  Pie?  Sorbet?  Trifle?  Panna Cotta?  How about some pudding or pastries?  Lemonade just seems so limiting by itself.

Granted pretty much all of the options above will have you sitting in a nice diabetic coma or a sugar rush eventually.  That sort of sugar rush and crash will have you busting through walls like the giant Kool-Aid pitcher guy.

Suppose that explains a few things about that guy, doesn’t it…

There is too much of a good (or just flat out sugary) thing, too.

Don’t get me started on the mouth sores that come with too much lemon.  God forbid you have a cut on your lip.  I mean, chemo mouth is bad enough, but add your body weight in lemon juice and you’re asking for a month of pain. So … let’s look at it in a different way, shall we?

I like savory things.  Let’s go in a savory direction.  Gotta do something with these lemons…

Lemons can go into all sorts of sauces, marinades, can be squirted onto poultry and fish, into drinks…the opportunities are endless!  Roasted lemon chicken, lemon drenched veggies and pastas,  lemon fish of all kinds, lemon rice, lemon soups and stews, stir fry, shrimp…

I really should stop right here and point out that my doctors have had me on a pretty high dosage of steroids, so just about anything food sounds good.  That being said…this is still a bit of an overdose on the lemon scale, even for me.

That doesn’t change the fact that my life is, at the moment, an orchard of lemons.  Not to say that it’s terrible, just a bit more challenging than usual.   I try to be positive (and apparently ravenously hungry at the same time), but there’s only so much lemonade a person can take.  I get creative, flexible, come up with as many recipes as I can manage but in such a large dose if I can’t start selling these lemons I’m going to start turning yellow myself.  Yet somehow I persevere.  Being positive is what keeps my head afloat in this giant lemon juice swimming pool.   At least I hope it’s lemon.  I do have kids.  Is this a public pool…?  I really don’t want to know now.

So in my positive rhetoric that I’m sure some of you are tired of, I have decided to completely change the stupid saying so I’m not drinking lemonade until my stomach lining sloughs off into an acidic whirlpool of lemon-scented pain….

When life gives you lemons…

At least you won’t get scurvy.

Because what’s more confusing than a lemon with scurvy? I mean, other than my medical history…

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Absentminded Spoons

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.

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.

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.

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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Stepping Back

Time for another “I’m sorry I haven’t been writing but I’m going to try to write more” post!

I really do need to sit down and write a bit more, though, in all honesty.  Aside from singing in the shower it’s one of my better outlets.  And, unlike singing in the shower, I’m clothed and can drink coffee at the same time.  Win-win?  Something like that.

I figured I would step in and give a little update as to what’s been going on.  As of October of this year it looks like I’m going down the cancer hole again.  My lung cancer, persistent pain that it is, has returned for a third visit.  There are a couple larger tumors in my upper right lung as well as a few small ones.  Consensus between myself and my doctors is that … quite frankly, chemotherapy just isn’t an option this time around.  Nor is radiation.  Nor is surgery.  I like how one of my doctors put it, “We’d rather you not end up looking like Swiss cheese if we can avoid it.”

From anybody who has stared cancer in the face those options can look rather bleak.   However, one thing I always told myself going through all the previous chemotherapies is that if I could do these…live a bit longer, I might be around long enough to see something better come out.

This year the FDA approved a medication called Opdivo.  Immunotherapy.  There’s all sorts of technical ways of explaining it, but let me simplify. Cancer cells are just mutated cells, we know this, we get this.  The problem is why our body doesn’t attack those mutated cells.  Imagine your cancer cell as a stereotypical chameleon.  Tossing up camouflage whenever it perceives danger.  Cancer cells do the same thing, disguising themselves as normal cells with a shield of sorts, fooling your white blood cells into not attacking.  Now, in comes immunotherapy.  The goal is for it to come in, tear down those shields in order to let the white blood cells recognize it for what it is.  Prey.  Long story short?   The Opdivo kicks the door down and lets your body do the grunt work.

Ideally it sounds…so much better.  I’ve done two treatments so far and, admittedly, it feels a lot less harsh than any chemotherapy I’ve gone through.  Most of the side-effects I’ve felt are minor and things I can easily shrug off.

So far … cautiously optimistic.

To top this off, the doctors at OHSU are looking into doing a little genetic testing on my tumors.  A small percent of a small percent of my type of cancer in women my age can be affected by a few specific genetic mutations.  If mine match up, it may open a few more doors for me in the means of clinical trials and targeted treatments.

Until then … well, we always have Thanksgiving to look forward to, right?  Hope it’s  a good one for you folks!

Because putting a little drawn doctor next to the medication clearly makes it more appealing.  I’ve never seen the commercials, nor do I know if this little doctor guy is in them.   But somewhere, deep down, I’m imagining him as a little human version of Ludwig Von Drake.

“Now vis imm-un-o-ther-a-py ve make ze cancer dead, dead!”

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