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Posts Tagged ‘radiation’

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

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.

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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…

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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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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.

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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.

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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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For the last three to four months I’ve been starting and re-starting, erasing and saving this post.  Half the time I get a  paragraph in and I just walk away.  Writing, reading, memorizing, and altogether being creative lately has all but been sapped from my person until recently.  With how fleeting these moments seem to be for me, I feel it’s best to sit down, while I still have it, and write once more.

My house has been under a false sense of sanity for a while now to the casual observer.  Two kids, a semi-decent lawn, a house not completely derailed and messed, a dad who works, a mom who stays at home and looks healthy.  We smile in public, we pay our bills, and we do our best to keep ourselves informed in the world around us.  But I can tell you, right now, that what you see is only the tip of the iceberg.  Not to use cliché statements or anything but really, what you see of the iceberg is small compared to what’s beneath the surface.  A little lesson I’m sure the survivors of the Titanic could tell you in spades.

When you dig a little deeper, though, boy are things on the crazy side.

The short list of crazy?

  • The axle on my car broke.
  • A pipe burst in our back yard.
  • My son was diagnosed with ADHD.
  • My son keeps getting into fights at school.
  • I just spent the last three months in radiation therapy.
  • The roof keeps trying to leak.
  • Found out that I’ll be starting chemotherapy soon, even though I’d hoped to avoid it again.

And now…for some expansion, because when you just list it out like that it really, really comes across as bad.

Car Chaos

So, last summer as I was driving to and from various doctor appointments (All part of my monthly routine, mind you.  These were just followup and checkups) I heard a few strange noises coming from under the hood.  Both the brake and the oil light came on together, giving me reason for alarm.  Searching through the manual just told me to replace the belt, checked under the hood…the belt was fine.  Attached. Didn’t seem off at all.  So I pulled onto the freeway and headed home. Turns out that shortly after, somewhere along I-5, I lost one of the pulleys from my engine.  I pity the driver who had to dodge the bouncing thing that was somewhere, somehow, ejected at seventy miles per hour.  This, of course, stopped my battery from charging.  Over the forty mile trek I watched my battery power slowly deplete and by the time I was backing into the garage all of the interior lights had gone out and the car sputtered to an uneasy stop. My husband came home, figured it out with some research, and after a bit of Google-fu did his own fix.

This seemed to be all right for a while. Until I was about halfway through Radiation this year.  It rattled. It squeaked.  And every time I turned the corner it sounded like somebody tossed a wrench in the engine just to watch it bounce around.  Taking a leap of faith I found a mechanic to look at it and it turned out that not only did my husband install the pulley wrong–but that my axle was grinding out its’ last few breaths of life.  Every corner turned was a protest of agony that could be heard five blocks away and sent me sinking down in the driver’s seat in shame.  Between my parents and my husband taking a day off, the mechanic had it to me the next day, fixed up and ready to go.  This alone wouldn’t have been too bad, but…

Backyard Flooding

The same day I’d been trying to figure out the axle, I came home to yet another surprise.  I stepped into the house, went to fill up my water bottle and noticed that the water pressure was insanely low.  I could hear water running in the pipes.  Checking frantically I could not find the source.  Finally I ran outside to see water bubbling up from the ground like a primitive drinking fountain.  Calls to the city, plumbers, and my husband led me to seeing dollars that I just didn’t have fly out the window.  After monetary help from both my parents and my husband’s parents and, of course, turning the water to the house off, we finally finagled a solution out.

Long story short?  The city I live in, last year, changed their water source.  It used to have a low pressure, flowing easily downhill.  When they changed, the direction in the pipes all shifted, having to add pressure to suddenly deliver water uphill. There was at least a little consolation knowing that my house was one of many that had to face pipes bursting in back yards.  Now if I can just hold my breath, cross my fingers and not asphyxiate myself in the process hopefully, just hopefully, the pipes in my house can handle the water now coming in from a brand new line in my back yard.

Parenting Challenges

I like to think that my own health offers my family enough challenges, but often I am reminded that there are no real limits to what can be thrown into the gears.  I’ve suspected for a while that my son might have hints of ADD, possibly even Autism.  This year, his first grade year in school, things seem to have boiled over.  He can’t keep his hands to himself.  He randomly would stand, walk around, drop to the floor, kick at his chair.  He has troubles verbalizing things, even if he does understand them.  I am constantly having to remind him to use his words.  Unfortunately it got to the point at school that he was becoming a danger to other children.

Now, before anybody assumes, I am going to point something out.  My son is amazing.  I could write an entire blog post gushing about how much my son has already gone through and triumphed and it still wouldn’t give you the best indication of his personality.  He’s joyful and curious, creative and full of ideas.  He loves to smile, to have fun, and is so very wonderful to his little sister.

In January he was diagnosed with ADHD after I finally managed to meet with a doctor from Doernbecher’s Children’s Hospital in Portland.  Even though he flaps his arms when he’s concentrating, opts to yell or grunt or make awkward noises instead of speaking, and will at times pace or run circles in the house so he can think (‘Dream dancing’, as he calls it), the doctors have dismissed the possibility of Autism.  Unfortunately, like so many people with experience with ADHD know, ADHD tends to not just come alone.

The medication did wonderful for him for a couple of months, almost five in total, but now it seems to be petering off and he’s resorting to old habits.  It may require a dosage change, but there may be other things going on.  OCD, Asbergers…these are just two of many possible things that have been put onto the table.  Not to mention that he’s watched his mother go through cancer three times in his short life…which I cannot imagine is easy on a child’s shoulders.  I don’t think he understands the possible gravity of my situation, but I’d be a fool to think that my poor health hasn’t had an effect on him.

Radiation Reality

Yes, they even give you a certificate when you finish. My daughter was there with me for every treatment, enjoying the waiting room and free access to PBS. I'm sure she'll miss it more than I will.

Yes, they even give you a certificate when you finish. My daughter was there with me for every treatment, enjoying the waiting room and free access to PBS. I’m sure she’ll miss it more than I will.

And on that note…well, the good news is that I am done with radiation.  The small tumor between my esophagus and my bronchial tubes has been radiated up until the beginning of this month.  The side effects of pain in the area are mostly gone now, but I seem to have a cough that doesn’t want to leave me alone.  The dead tissue in my lungs often contracts, too, and I find myself struggling to breathe.  Chances are I might be coughing for the rest of my life and keeping an inhaler in reach for days that I just can’t get my lungs to fully expand on their own.

As I step further from radiation I’m getting my energy back, which is good because I was about as useful as a sloth for the longest time around here.  I’m walking more, I’m up and capable of doing laundry and dishes and cooking once more.  But Monday proved to me that I still can’t quite get through the grocery store without struggling.  Normally I can come home and help my husband unload the van and put things away.  When I walked in this time, however, all I could do was sit. This much is a general frustration on my end every time I go through some sort of extensive treatment.  Be it for surgery, chemotherapy or radiation none really prove to give me an energy boost.

Under One Roof

So, a year ago my roof, in the middle of the night, started to leak.  We patched it as best as we could, but by Summer of 2013 we were up there for months peeling off old shingles and putting new ones on with a fresh spread of tar paper.  This took most of our summer, and I was under the impression it was done.  It was a bit on the chaotic side,  however, when I came home only a week after the back yard and car issues to find my laundry room light full of water and spilling over onto the floor.  It took a few tries and testing and one hefty tarp, but my husband figured out where he’d missed a bit of roofing tar.

While it seems to be doing all right, I admittedly cringe a lot more during a heavy rainstorm–which spring has supplied us endlessly with so far.  It looks good, I think, and I’m hoping to paint the house to match  this summer.  Changing it from a chewed Trident cinnamon gum look to a nice navy blue will be a welcome look, I think.  Maybe it’ll stop the door-to-door salesfolk from coming up and making silly conversation with me:

“Hey there, we’re in the neighborhood fixing up a gal’s place over on Field.  We noticed that your roof is old and looking like it needs repair!”

“My roof…is brand new.”

“..r..really?”

“Yep. Just replaced it last Summer.”

Two of these in a row.  The second looked properly abashed, gave us his card and left.  The first, however, kept putting his foot in his mouth.

“Oh…w..it looks old.”

“It’s not.”

“R..right. So about your windows, looking to update those?”

“When we can afford to, but right now I’m about to go into chemotherapy so we’re saving up our funds.”

“Really? You don’t look like you have cancer.”

This received a long silence from me.

“That is…I mean, you have hair, which is neat. Lucky you!  My aunt lost hers during chemo.”

“I haven’t started chemotherapy yet.”

At this point he made a hasty departure.  Somehow I don’t think he felt he was going to get a sale.  The ‘No Solicitors” sign should have helped, but…some people are apparently illiterate.

Chemotherapy … again

And now it all boils down to this.  As I approach Summer and a few months of weather that will allow for house painting, swimming lessons, and the summer camp that I help run, I’m also facing an entirely different issue.  For the first time during summer I’ll be going through chemotherapy.  Four months of it.  Once a week for two weeks in a row, then one week off, then back two weeks, wash, rinse, repeat.  It won’t be near as much driving as radiation, but again, I will lose my hair.  I will be exhausted.  I will be a useless sloth once more.  But somehow I’m going to do it.  It’s not a matter of bravery, it’s a matter of …well…really, what other option do I have?  In my eyes there’s only one other and it isn’t an option.

I have until after my CT scan to get things done for camp—which has not been scheduled yet.  While I’d like to put it off as long as I can to get things done, I know that after I do a little spell check and re-read this for errors…I’m going to be on the phone trying to figure out what’s taking so long.

And then?  Well, at least I didn’t give away my scarves, eh?

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There’s always that lapse of time between diagnosis and treatment that is riddled with tests and multiple doctor appointments.  Over the last two weeks I think I’ve spent a vast majority of my time in my car driving to and from the various doctors offices.  To my list of specialists I’ve added a new radiation oncologist, who has, as of yesterday, had me fitted for a new pillow.  There’s a technical term out there, but it’s essentially a plastic bean bag pillow that they lay you on and suck all of the air out of so that it forms neatly to your back.  Line it up with my old radiation dots and you’ve got a pre-posed position suitable for every radiation treatment.  After doing a little fitting the official word is that my treatments will begin next Friday.  I’ll be continuing radiation treatments for six weeks and after that there’s still the possibility of chemotherapy on top of it.  Both my oncologist and I are a bit hesitant to jump into that just yet.

Radiation is going to be a bit different, from everything I’ve been told.  I will likely have that deep sore throat that will last for far too long once more.  My heart will be exposed, as will my spine, lungs, and esophagus.  There’s a whole list of things that could turn wrong, including the risk of secondary cancers from the radiation. (Hah!  Secondary.  I think I’m a bit beyond that, somewhere in the quaternary and quinary arena.)  My radiation oncologist seemed a bit surprised that, due to how the cancer is pressing on both my esophagus and my bronchial tract that I’m not coughing up blood.  I’m not sure what to think when I’m not having an expected symptom.  Am I not coughing hard enough to make the cancer cells hemorrhage? Should I be aiming for this?  Somehow…I think I’m going to count myself lucky in this case.

Image

I live in the shadow of a volcano. This isn’t metaphorical for anything, I just..really like that volcano and this update was in dire need of a picture.

Amid all of this what do I do?  I live on.  My daughter will be registering for Kindergarten today with the same teacher that my son had.  I’m working on getting the Day Camp I help run planned and ready to run, and also trying to wrap up what commissions I have so that I’m not leaving those who’ve requested them out in the lurch.  It’s the day in and day out chaos that most people expect on some level or another.  I get by, press on, and enjoy every minute I can.  Really, what else should I do?

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Cancer has so many imprints of my shoe on it's proverbial rear at this point, I may as well add another.

Cancer has so many imprints of my shoe on it’s proverbial rear at this point, I may as well add another.

From the picture alone you can gather exactly what’s been going on in my absence from my journal.  Between taking care of my son, who is, in fact, ADHD and starting his own vast array of treatments and dealing with my side of the health spectrum, life has been nothing short of crazy.  Some things do get neglected in those situations and for that I apologize.

A few weeks after Christmas the entire family came down with a round of the worst head-cold known to the history of man.  Or at least to me.  As I watched my kids and my husband each get sick and get over their illnesses I noticed that one thing was a bit off.  My cough wasn’t getting better.  In fact, it was becoming incredibly difficult to breathe in through my right lung.  I could fill it.  But it took a lot more effort than it should have.  I didn’t do much, however, knowing that I had a CT scan scheduled for January.

Well, the CT came and went, only to show that I had a few inflamed lymph nodes.  Because of my history (I could almost trademark that statement, I hear it so often) they sent me in for another bronchoscopy a week ago to poke around.  Turns out there’s a bit of a cancerous return that’s poking into my airways–hence the difficulty breathing.  That’s right, lung cancer is back.

This time we’re not really looking at chemotherapy, for a first, and since it’s in the lymph nodes it’s not really something they can fully operate on.  So what’s on the table?

Radiation.

If you’ve been following my blog for any amount of time you’ll know that my lung cancer and breast cancer were caused by the radiation I went through ten years ago for Hodgkin’s Lymphoma.  I have my reservations, but really at this point it’s down to me having much less options due to just how much my body has gone through.  Four chemotherapies, one radiation, several surgeries, and two pregnancies can do a number on a body.  Even if they were spread out over fifteen years.  Ultimately, for me, I want a cure.  Everybody does.  That goes without question.  But if that’s not possible, I want to live as long as I can and still go kicking and screaming in the end.  It’s not just about me anymore, it’s about my children, my husband, my parents and his parents, all of my family and friends.  Even for the checker at Fred Meyer who loves to chat with me every time I get groceries.

Not to mention that I’ve been told explicitly by several people that I’m not allowed to die any time soon.  Can’t go disobeying orders now, can I?

So here is where I stand, waiting on a PET scan to make certain that this is all collected in one small area before I delve into radiation therapy.   I won’t sit here and start cackling about the prospect of possibly not losing my hair, though, since I went and drew up an entire comic on it last time…and still lost my hair.  Some day I won’t put my foot in my mouth, honest.  Either way, though, it stands to say that I’ll likely be dusting this blog off again and writing a bit more.

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…to my obnoxious lung.loplung

Now, it may seem a bit odd to say it, but I can confirm that air does not belong where it has been highlighted.  Air in your lung? Good!  Air out of your body? Also good!  Air stuck between your chest wall and your lung?  Not so good.  This is what you would call a pneumothorax, which is what I went through post-surgery last winter.  Oddly, I didn’t really feel it initially, but once it was released I could certainly tell the difference.

Jump forward, skip my chemotherapy, to now.  It would appear my latest PET scan has revealed that my obnoxious right lung is at it again.  This time my body decided that it would build up a little bit of fluid between my lung and chest wall.  Same spot, same story, but at least a little less on the serious side.  It could be tapped, yes tapped (much like a keg) in an outpatient procedure, but due to my previous pneumothorax I run the risk of it inflating right back up again.  It’s not affecting how I function on a day-to-day basis, and once again I don’t really notice the difference.  So this means that I’ll be pretty much doing the wait-and-see game for a few weeks, come back in for a CT scan, and we’ll go from there.

However, this isn’t the only news I received on Wednesday about my PET scan.  I’ve been a bit hesitant to divulge in the rest because I don’t really want to instill fears in my family and friends…but there’s really no point in holding out.  There’s a spot in the lymph nodes on the right side of my pelvis. That’s correct, my right side.  Again.

Here’s the catch: it’s tiny.  So tiny in fact that they’re really not sure what it is or if it’s anything at all.  But due to my history, that is also something we’re keeping an eye on.  Too small to treat or biopsy…and it’s not impairing anything or causing less than desirable side-effects.  It’s also out of the radiation field where I was treated, so it’s got all of us scratching our collective heads.  It’s not a cyst, it’s not something spawning off of my uterus, it is simply there.

And only time will tell if it’s something to be concerned over or whether it’s something I can forget.  Until then…?

I’ve got a life to live.

And chocolate to obtain.

Because … oh really, do I need to explain why I need chocolate?  It’s chocolate. ‘Nuff said.

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When I was little and an adult would ask me, “What do you want to be when you grow up?” there were really only two options that I ever replied with.  The first one came natural, as it revolved around a hobby I’d come to thoroughly enjoy.  All of my notes and homework were littered with illustrations on the side, sometimes they were cartoon characters, other times they were doodles of family members or the family dog.  Even into college my lecture notes often had doodles along the edges of the paper, often times serving as my own interpretation of the written subject or as marks that I could easily find exam material by.  Obviously, I wanted to be an artist.

My second one was a little less known and considerably less obvious.  Especially if you consider that, while I enjoyed babysitting kids and working with them, I truly was not a fan of toddlers and diapers.  I preferred being able to hand a difficult child off back to the parents when they came home or back to the leader out at Girl Scout camp when I was quite done with being a climbing tree/song leader/line leader/game instructor/hiking guide/helping hand as a Program Aide.  Despite all of this, for some silly reason I really, truly, wanted to be a mother.

To be honest I also wanted to be a teacher, but that would mean I had three things I wanted to be when I grew up, and completely derail my train of thought.  But I digress.

Now, I did not, however, go to college looking for a husband.  I went to work on my art, get a degree, and have a new experience away from home.  College was an adventure dabbling in a bit of reality and a lot of childhood, all crashing together in one central place.  I was never one that delved into the party-scene, in fact, I rarely touched alcohol.  My ‘parties’, if you want to call them that, consisted of me and a few friends meeting up to play Rolemaster or Dungeons and Dragons.  There may have been alcohol at a couple of these, and there may be a story about somebody taking shots to rolling natural 1s and 20s…but that’s a story for another time.  But while I was in the midst of this, I managed to end up doing what I didn’t expect I would.  I found a husband.  No, I found an amazing best friend.  (If you haven’t been reading long, I have a few best friends, all of a different assortment.  My mother, my husband, my father, my sister, and also the ‘traditional’ sort of best friend, if anything about my life can be considered traditional, that is.)  One thing we both found out after a while was that we both had the same sort of goals…we both wanted to be parents.

Now, Bryan, that’s my husband, had the idea of having a nice sized brood of children, having come from a family of four kids.  I was, for the most part, an only child since I rarely saw my half-sister until we were both in our teens and it switched to a constant.  For me a smaller family seemed more like something I could handle, but I wanted more than one since the times I did have with my sister I enjoyed more often than not.  We settled on four…maybe five as our decision, depending on whether or not motherhood drove me down the path of insanity after only two.

Then came cancer.  You know, you never really realize just how much you love somebody until something like this happens.  Bryan had already been informed about my cancer, but he, like myself, thought of it as something in the past.  I was sixteen then, and at this point I was twenty going on twenty-one.  Cancer was in my past.  But I was about to learn the hard way that cancer would never, ever, be fully in my past.  It was my past, my present, and my future.  My chances at motherhood were about to be tested in a way I never had even perceived.

When I sat down with my doctor I was given a few options for my treatment.  Not only had Hodgkin’s Lymphoma come back, but it had come back to the full extent of which it had been when I was originally diagnosed as a teen.  The chemotherapy hadn’t worked.  They wanted to hit it with everything, but in the spirit of giving me options, they told me I could either A: Do full body radiation, or B: Do an intense chemotherapy with localized radiation.  I was a little giddy about not having to do chemotherapy, but it seemed to dawn on me to ask, “Will I be able to have children?”  The two doctors exchanged looks, then looked to me, “With full body radiation it’s unlikely, however there are procedures we can do to surgically move your ovaries aside…”

Let me remind you that up to this point putting a port in scared me to no end, so the thought of somebody operating down there to move around what I’d hoped would be the temporary home of a new addition to my family was petrifying.  I opted for chemo and localized radiation.  To this day I’m thankful that I did.

Because of this, Bryan and I sat down for one of the most difficult talks I’ve ever had to start with him.  We were barely dating, but we knew we wanted to marry after we were done with college.  So I felt it important to bring up the elephant in the room.  After dealing with chemo twice, I wasn’t sure my body could handle doling out a brood of five children.  What surprised me was that he didn’t seem to mind.  I thought not only the cancer, but possibly the thought of having fewer children might scare him away.  But it didn’t.  Bryan stuck by my side through the whole ordeal and even afterwards.  If that doesn’t say love, then what does?

Over the years I got a bit braver, thought maybe I could do up to five.  After my first I was convinced I only wanted one, then eventually two, maybe three…my decisions never really had any finality to them because I knew that based on my own experiences that I would constantly change my mind on the matter.  Somewhere, inside, I had decided that I was done when I was holding my daughter in my arms for the first time.  I had one of each, they were both beautiful and only two years apart.  My husband, however, thought just maybe…maybe he might be able to convince me for just one more…

…and then cancer.

Again.

This time it was breast cancer brought on by the radiation I’d had previously.  Later Bryan told me that the only reason why he never tried to convince me for a third was because of breast cancer.  Two births, three different types of chemotherapy, radiation … the body can only handle so much and still be able to thrive during healthy times.  Not to mention my daughter’s birth had to be induced early due to pre-eclampsia.  We both decided that a third was out of the picture at this point.  We had two to cherish, love, and raise…probably a good decision on our part.  Why? Because as you know…cancer came back.  Again.

The chemotherapy I’ve only just recently finished will also possibly cause uterine failure.  Kind of the nail in the coffin when it comes down to  having any more kids.  However I count myself lucky.  I had six years of good health in which I had time to finish college, marry, and have two beautiful children.  Not everybody gets that choice or that chance when faced with similar situations to my own.  I always have to think of that whenever I feel a little bit of regret for not having more.  Besides, I think the two I got are pretty awesome and really, there’s only so much awesome the world can handle, right?

Yeah, that pretty much sums it up.

 

 

 

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