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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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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.

It's my lemon! Love him!

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

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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.

rawimage

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

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

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

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

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

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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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I know that everybody has heard of those random horror stories shared by triage nurses, doctors, and staff in the ER all over the internet.  The odd things people shove in certain places.  The strangest things found on X-rays!  You won’t believe what these people swallowed!  Those and the other insanely titled click-bait that pops up on your Facebook feed and Twitter.  What they leave out, however, is what it’s like to be on the receiving end of those strange mishaps.

I can’t speak for everybody, but when I have something downright stupid happen to me because of my own, well, stupidity, I find it easiest to simply own up to it and keep trucking on.  If you’re laughing (after you’re done crying, of course) about your own injury then you know that the ER staff will be laughing at it, too.

This weekend started as any other in winter might.  A slew of things to do, one kid sick, the other in trouble, and I was staring at the very real possibility of catching my tiny minion’s plague.    I spent the first half of my Saturday running around like a chicken with its head cut off trying to get things ready for a Christmas Parade.  The scout troop I co-lead in would be marching and I wanted to make sure everybody had something festive as well as candy to give out.  Instead of just stopping at a few glow-necklaces and a bag or two of candy I decided to go all out.   Already somewhat drugged up on DayQuil I sat on the floor of my dining room, decorating my kids radio flyer wagon.  Little Girl Scout signs lined the sides, candy canes stuck out the back, glitter, tinsel, candy, ribbons, the works!

As it happened, this time, I was in a bit of a bind trying to attach the signs to the wagon.  Neither myself or my husband could find my hole punch.  Minor problems, I know, but when you’re on a tight schedule and feeling a bit doped up on cold medicine anything can seem stupidly dire.  As a last resort I decided…what better to use than our brand new stainless steel meat thermometer?  Quite sharp, it went through the signs like butter and made my task that much easier.  Perhaps a bit unconventional, but it certainly did the trick.

Back to work I went, and for several hours I sat there sprawled on the floor, poking holes and weaving signs.  At long last it seemed that I was finally done.  Candy was mixed.  Wagon was decorated.  Bells and glow necklaces were prepared.  Candy bags were opened.  With a satisfied sigh I settled the meat thermometer and the tape on the chair next to me as I pushed to a stand.  Mission, accomplished.

I’m sure some of you can already see where this is going.

There are times in my life that I wish I had a studio audience on hand to cringe or yell at me, warn me when something stupid was about to occur that everybody could see coming except for me.  This was one of those times.  As I stood there I realized that I could add just a little bit of flair to the front of the wagon.  Now, I’m 6’2″, and the ground only seems to get further and further away the older I get.  So I opted, this time, to sit on the chair

The good news is that the meat thermometer missed my spine and only went in about an inch.  The bad news, well…where do I start?  I sat on a meat thermometer, which puts a hole in more than just your favorite pair of pants to say the least.

Unfortunately I had to miss the Christmas Parade and call my co-leader, half laughing, half crying, about how I had to go to the ER and get a tetanus shot instead.  Her concern slowly (OK, no, rapidly) morphed into amusement as I relayed my tale of woe.  She later on had another of our leaders swing by for the parade goodies so that I could go to the ER.  But not without asking if I properly figured out my temperature first…

I must admit there is really nothing like walking into the ER, staring at your triage nurse and telling them, “So, I mean I know the best and most accurate temperature is taken through the rear, but I promise you that was not what I was trying to do.”

Or…

“Yeah, I just-just used that thing for turkey at Thanksgiving but I just don’t think I’ll be using it again…”

Or…

“So the phrase ‘stick a fork in me I’m done’ has an entirely new meaning for me now…”

Or…

“Sadly I didn’t keep it in long enough to figure out what my temperature was, but I’m pretty sure I’m somewhere in the ‘undercooked’ category.”

The numerous rear-related puns that my husband has been throwing around has also been nothing short of amusing.  At one point he asked me if I wanted to use our daughter’s Samoa Cookie shaped pillow (a near-perfect circle) to sit on.   He really can’t keep a straight face when he’s telling jokes, either, so every time he’s started a pun of some sort he just trails off giggling.  I think I’ve thrown my hat at him about five times today.  It must be love, though, since every time I throw it at him he just brings it back for me to throw again.

And thankfully the tetanus shot wasn’t in my throwing arm.  Small blessings I suppose.

 

 

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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!

bristolmyers-bmy-lung-cancer-drug-successful-in-latestage-trial

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.

rarities-31

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

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

I should do something about that.

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

And so forth.

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

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

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

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

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

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

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

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

Cheers!

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Updates n’ Fixes

Hello people!  Whomever you are out in cyberspace that still happens to peruse over this blog, that is.  Whether you’ve long since thought I’ve dropped off the face of the planet, or you’re stumbling across my place for the very first time, again, hi!  Real life, as I’ve pointed out on my ‘about’ page has been nothing short of crazy this last year.  Between my lung cancer coming back, having to endure radiation once more, and then chemotherapy last summer you’d think I had well enough on my plate.  But really, my life isn’t about my illness, so there are a lot more things that keep my plate not only full, but overflowing.  My son is doing better, starting to adjust to his ADHD and OCD (the second surprisingly more difficult to adapt to than the first in his case) and is doing much better in school.  Every day he impresses me with how articulate he’s getting and how much better he’s doing in school.

My daughter, on the other hand, is struggling.  She’s smart, beautiful (shush, I’m not bias, I swear), and very friendly when given the inclination.  However she’s started acting out at school in the footsteps of her brother last year, and between myself, the teachers and her doctors, we’ve not quite figured out what’s going on to make her act out as much as she does.  Could be mimicry of her brother, could be emotional stress of watching me go through cancer again, or it could be ADHD as well.  Or all three.  (Admittedly I kinda doubt the third option, she seems more disinterested than distracted most times.)  She’s pretty bright and catches on quick, though, and I have no doubt she’ll come out of this stronger…it just might be a bit of a long road ahead of her before we see that come to light.

On my own I’ve been working on art commissions, slowly trudging through them when I can find the time.  The ultimate goal is to earn up enough in my commissions alone to buy an upgrade to my dated camera (Pentax K1000 … 1979!).  Film is becoming more difficult to purchase and develop, but I’ve been so spoiled by having a nice camera that I just can’t justifiably buy a replacement unless it can do what my old camera can do.  That…costs money.  Money I don’t want to pull from our savings or from our checking, so it’s going to come straight from my commissions alone.  Long story short, this may take a few years of savings at the rate I’ve been drawing as of late.

I’ve also dived back into Girl Scouting, taking a test drive leading my own Daisy troop.  Needless to say it was a struggle with everything else going on, and I have discovered that I am far better at teaching teens than I am five and six-year-old kids.  Starting in April I’ll be helping lead a troop that spans all ages, and while I’ll still be a leader in my daughter’s troop, I will be helping lead the older girls instead.  Not going to lie, it’s decidedly a win-win for me in that regard and it means my daughter gets to stay in scouting with social interaction that I think she very much needs.

Hopefully I’ll get a chance to write more frequently, as I know this blog is how a lot of people keep up to date on how things are going in this household.  I have a few more topics I can touch on now, like this strange marvel of how I kept my hair during the last chemotherapy.  I…I’m still not sure how that happened.  But, regardless, it should be fun and hopefully much more up to date!  I might even toss in a bit of Scouting stuff and kid stuff, as I am prone to do.

(And also, as a note, I know a lot of my pictures are showing up as broken links.  All of those were linked from Facebook, which seems to not be so keen on direct linking.  I will not be doing this in the future, but I don’t think I have the time to go back and fix all the ones from the past.  So much apologies, but those broken links will likely save and drive somebody insane out there.  They..kinda drive me insane, too.)

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