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Posts Tagged ‘medicine’

So I have to admit that because of my history I’ve got a pretty lengthy medical file that probably weighs more in pounds than it measures in thickness.  So it’s always been in my best interest to actually purchase some sort of medical ID bracelet or dog tags to give people a heads up in case something goes wrong and I’m unable to communicate.  I am, unfortunately, a true procrastinator at heart.  What makes matters worse is that, when I’m faced with a lot of decisions before reaching an end goal, I tend to drag my feet like an overweight dachshund being forced on a walk around the block.

Case in point: I probably should have had a medical ID bracelet the moment I discovered I had an allergy that led to anaphylactic shock.  That’s basically when your body reacts so severely to something that it starts shutting down.  Eyes, throat, mouth…everything swells and cuts off the necessities.  You know…like air.  It’s not a super common allergic reaction, but most that deal with it frequently tend to carry an epi-pen or other life-saving medications around for this very reason.

Of course, the trigger for that severe reaction in me only comes from one source and it’s only maintained in one environment that I’m aware of.  Medicating myself ahead of time tends to curb the reaction to the bare minimum or down to nothing at all.  While great, it may or may not have given me a reason to procrastinate on a medical ID bracelet for just that much longer.

Jump ahead several years and we’ve got Breast Cancer breathing down my neck, a full on radical mastectomy complete with lymph node removal.  Anybody who has been through this or is even remotely familiar to this procedure knows that most nurses, phlebotomists and the like tend to frown on using the arm on the side your lymph nodes have been removed.  Not only does this include drawing blood and IVs, but they also strongly advise not using blood pressure cuffs and lifting anything over a certain weight due to the strong risk of developing lymphedema.  Lymphedema, in short, is pretty much a chronic and painful swelling in the arm.  It’s an unfortunate and pretty common side effect of losing your lymph nodes, as those are what pull water and fluids from any sort of injury through to your body’s waste system (liver and kidneys, naturally).  Without them, the fluid tends to pool and collect right where it forms, causing painful swelling.  In order to control it you’re pretty much stuck with the equivalent of compression socks on your arms for life.  There’s at least some solace knowing that people do make some pretty fancy and fashionable lymphedema wraps. But, once you have it, it can flare up or calm a bit, so you’re pretty much looking at a permanent condition.  Thus far it’s one I’ve managed to avoid.  Probably in my best interest to keep it that way.

You would think that this would get me off my rear, right?  A severe allergy, risk of a painful chronic condition if somebody pokes or squeezes the wrong arm…?  Well … sort of.  It did push me to start looking around.  My major roadblock, however, was that I was also on a plethora of medications, had several doctors…had emergency numbers that should be placed on such a thing…

But when you look at most websites offering these bracelets, you’re given 4-5 lines of space to put the most important things down.  How do you prioritize?  What do you tell people if you’re found unconscious and in need of medical help?

Like…how if you’re found unconscious in a parking lot, slumped over your steering wheel…?  Stop looking at me like that.  I can feel the disapproval through your screen.

I still didn’t have a bracelet made yet when I had my adventure during that chaos.  If you consider I could open my own pharmacy with all the medications they have me on,  knowing that info in the ER would have been mighty helpful.  I lucked out in that my husband is pretty well-informed with my health, but the wrong medication, the wrong dosage, mixed with another…?  There’s no way to pretty up the fact that it could kill you or severely hamper your recovery.

So I finally did some research.  Google can be such a marvelous thing for the prepetual procrastinator.

Turns out that if you have a novel of information you want EMTs, Nurses, ER staff, doctors or even perfect strangers to know if you’re out cold…can be put onto a simple medical ID card.  Tuck it away in your wallet, call it good.  I was hesitant at first, though, knowing that most of my medications and dosages, times, etc., are prone to changing.

Turns out people have thought of that, too.

If you go here you can find a form online that you can fill out with all the information that will be needed.  Blood type, emergency numbers, allergies, address, name, conditions, medications and dosages and times …

All the stuff to make your nurse proud.

So what does that leave to put on your medical ID bracelet or dog tags?  Anything you think would be needed immediately.   For me?  My name, two emergency numbers, and a line that simply reads “SEE MEDICAL ID CARD”.

Best part?  While the medical bracelet doesn’t come free (or cheap in a lot of cases), you don’t feel so bad buying a nice one that will last knowing that there will be little cause to have to replace the actual tag in the future.  Every time something changes?   Go back, fill it out again, print it for free in any of the available card sizes, tuck it in your wallet and go on with your day.  Considering how everything else in life is far from simple, it’s nice to see at least one thing is.

 

Med ID Bracelet

I went for the functional, but I’ve got a fancy one, too. I snagged mine from Lauren’s Hope … ended up arriving super early and in great condition.

 

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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.

unnamed

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

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

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

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

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

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

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

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

A mistake I will never, ever make again.

 

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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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Well, June has done it to me again.  Between the children being at home full time (and fighting considerably more often than I ever recall them doing), medical fun, and working on the last touches to the day camp I’m helping to run…well, needless to say life has been hectic.

That and I’m having a very hard time trying to figure out what to write.  I’m not done, by far, but every time I open up wordpress I find myself reading other blogs as opposed to writing in my own.  A simple case of writer’s block, likely, and I’ll find my way through it.

But, as an update:

Medically I’m feeling better, at least for the most part.  I still have my delightful pleural effusion (water stuck between the lung and the chest wall) that has led to my acquisition of a pulminologist to add to my collection of specialists.  I meet with him for the first time next week.

I am recovering from what feels like borderline pneumonia as well, so I am in high hopes that I might be able to get out of this chair a little more with the energy I had a little over a month ago.  I was, proudly, able to walk the entirety of the Oregon Zoo for my daughter’s birthday without growing the least bit tired or breathless.  Not bad when you only have most of your lungs as opposed to all.

All together I should be fine, give things a rest, then plow straight into directing a day camp.  I may not be as in shape as I’d like to be for walking the camp, but I at least can say that I’m alive and present.

Gotta look at the bright side of things sometimes, to remind me that things could be a lot worse.

I mean, really, I could be without chocolate.

And we all know how bad that could get.

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While sitting  in my infusion chair the day after chemo for my neulasta shot I found myself surrounded by the kind faces of my nurses.  There were cheers, a friendly card, and a large bottle of sparkling cider showered on me and fond statements of, “We love you but don’t ever come back unless it’s for a port flush or a blood draw!”.

Really, how else would you expect to be sent off after chemotherapy?  I feel like I’ve been running a marathon for a few months now and that finish line is very, very close.  Except, that finish line is only really an end to chemotherapy–correction, this chemotherapy.  There’s no way of telling if I’ll be facing more in the future or if I’ll just jog in for a series of tests and scans on the occasion every few months.  My cancer, this time, has been different, and not definitive in the “Hey, the lump is gone you’re cured!” sense that I would prefer.  My doctor is still murmuring possibilities of another type of chemo, just to be safe, and I’m sure more blood draws and scans are due in the very near future.

So what does this mean for me?  It means I’m back on my watch-and-wait routine.  As I’ve stated before, Cancer never really leaves me, it only takes vacations from now and then and randomly shows up unwanted on my doorstep.  But thus far it’s been manageable, as long as I do what I can to manage it.  So I’ll air out my bald head, watch the hair slowly start to come back, and put on my Girl Scout boots for a few months as summer camp season treads in once more.  I’ve been co-directing a scout camp the last two and a half years that’s been very near and dear to me since I was only two years old.  I can’t say I was coerced into directing, because when I was asked I didn’t exactly try to run in the opposite direction.  It’s been fun, so far, and with our Hawaiian theme we’ve got a lot of neat ideas to poke at.  Our spirit day, no less, is Mustache Day.  While I may have some hair growth by then, I somehow doubt that I’ll have enough to run about without my scarves.

There’s a terrible urge in me to pull out a yellow scarf, toss on a fake mustache that’s been bleached a bit, and toss on a yellow spandex shirt over my camp shirt.  Don’t get the reference? It’s OK, I’m not sure if it’s a good thing or a bad thing if you don’t know Hulk Hogan’s trademarks.

Maybe I’ll just go ZZTop.  That’ll work.  I’m sure of it.

 

 

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Ok, so maybe not quite appropriate for Girl Scout camp. But I digress.

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I know a while back I did a cancer glossary, a brief, somewhat humorous breakdown of all the words I use every day that most people would find foreign.  Chemotherapy was something I described as:

Chemotherapy – ‘Chemo’, medication given to a person to treat cancer.  Can be taken orally or through an IV, port, or tunneled line.  Kills cancer and just about any other quick-growing part of your body.  Removes both unsightly and sightly body hair.  Guaranteed to go from Chuck Norris to Lex Luther in one treatment.

Not exactly Webster’s quality, but still a rather cut and dry description.  But for me, there’s more to it.  A whole lot more.

Chemotherapy starts with the night before the infusion, drinking lots of water to make sure that my body’s ready for the onslaught of medication.  The pre-medication that needs to be taken to combat the side effects the next day will bring and the trip to the local hospital to get my blood drawn for labs.  It’s an early to bed so I can be up early the next day, kiss my kids goodbye as I place them in the hands of my mother in law for the day, and then drive with my mother the hour trip to the clinic.  Meeting with the doctor briefly before he gives me the OK to be treated.  Then, after all the fuss, I’m escorted to my chair where I’ll be spending the next six hours or so watching nurses hustle and bustle back and forth to their wealth of patients.  After a lengthy time dozing in and out of consciousness and barely registering guests that have dropped in, I’m allowed to go home, napping through a car ride and then spending the evening shuffling about and crashing early due to exhaustion.

That’s far from the end of it, however.  The next day I wake up feeling fresh and renewed, perhaps a little off, but otherwise great.  I’ve got the energy to drive down and get my neulasta shot and drive home. Possibly even make dinner and pick up the kids from school depending on the time of the appointment.  I’m active, alert, and feeling generally just fine until right around nine.  I should be getting tired.  I should be crawling into bed for a nice night’s sleep.  But I can’t.  I’m buzzed and awake but physically exhausted.  What’s worse is that my brain isn’t particularly active at this point, it’s remarkably silent.  Yet I cannot fall asleep.  I stare at the computer, I read a book, I pace, I clean, and finally I throw up the white flag and crawl into bed where I’ll lay awake for another hour before my body finally gives in and lets me rest.

Until the next day…when I wake up at nine wondering why my children are at my bedroom door staring at me in hopes that I’ll stir and get breakfast on the table.  But even then I only open my eyes and stare at the ceiling and attempt to will my body into cooperation.  It’s stiff, sore, and decidedly heavy with exhaustion.  Typically on this morning I can’t physically manage to get breakfast on the table until nine-thirty, when I’ll be serving lunch only an hour and a half later at eleven.    I’ve got a little energy, but the pain starts to kick in, the joints start to ache and get stiff, and even ibuprofen and copious amounts of water don’t seem to do anything but take away the edge.  The next few days it’s a downward slope where I huddle on the couch or in my computer chair, only moving to eat or use the bathroom or to help my children do much the same.  If I can avoid it, which I rarely can, I don’t take my kids to school, instead relying on my husband to do so.  Most of the times he works, however, and I find myself huddled against the steering while and trekking around town to make sure their education doesn’t suffer.

This downward slope is aches in all my joints.  Random bouts of nausea coupled with a sudden sensitivity to certain smells and tastes.  Constantly wanting to eat but not being hungry and chewing on gum to get a flavor that you just can’t explain out of your mouth.  Stopping conversations mid-sentence because I can’t recall what I was talking about and then fumbling for words I know exist but I simply cannot recall.  Staring at my computer screen for hours wondering what I was going to do.  Was I going to write something?  Was I going to simply check my email? Play a game?  I can’t recall.  Sometimes I end up waking up with keyboard imprints on my forehead from an unexpected nap while staring at the constant cycle of family pictures on my wallpaper.  Yet, in spite of all the tiredness that leaves me heavily leaning on door frames, at night I still can’t get to sleep until eleven or midnight and I can’t pull myself out of bed before eight or nine.

Then, after a few days, things swing upward.  I get my energy back and my digestive system seems to right itself.  I can eat regular food again and I won’t be near-vomiting when my toddler soils her diaper.  I can do housework again-but not too much.  I have a bad tendency at these times to jump on all the cleaning that’s not been done while I was on my down-swing and end up a shaky tired mess.  So I take it easy…and then my hair begins to fall out.  It’s a stiff and sore feeling along the scalp that signals it, the death of my hair follicles.   It’s painful to have somebody rub their hand against the grain.  I wake up with small hairs that have fallen on my pillow, get stuck in the collar of my shirt, and somehow manage to find the most sensitive places on my skin and make me itch like I have chicken pox all over again.

As the hair falls out I get new surprises, a wave of hot flashes that start with a pin-pricking feeling along the back of my neck that’s followed by a wave of heat that flushes over my back, my head, my chest and my arms.  Night sweats, cold chills, hot flashes, and a general drained feeling that follows each one.  Signs of my body considering giving up on the whole fertility thing, leaving me wondering if my obstetrician’s worries of possible ovarian failure could be true.

After all of this I’m suddenly faced with random and uncontrollable body shakes, leaving it difficult to grab things because my hands won’t stop moving and causing my feet to turn in now and then when I’m trying to walk.  Making tasks so simple seem so difficult.  It’s days like this where I’m at the store getting a small batch of groceries and luck would have it I get the cart with a sticky wheel.  It takes all my effort to turn it and with each item I put in it gets more difficult to maneuver.  Halfway through the trip my hands and arms are shaking and I’m tripping over my own feet.  I take a moment to rest and my body, as if to spite me, sends me into a hot flash that leaves me gasping for cooler air.  Somehow I make it to the car, unload the groceries, and realize Murphy is a sick and cruel man when I note that the only places to return shopping carts are three lanes away, crossing busy lanes of traffic.  I feel so very, very tired.

Yet I still manage to drive home, back into the garage and close the door.  As I sit there in the dark everything hits me as I can’t even seem to coordinate well enough to grab my car keys and all I can do is rest my forehead on the steering wheel and cry.  For no reason and every reason, and the realization that this godforsaken disease will never leave me alone.  Even after the tests are clear and the scans are clean, cancer will never, ever leave me.  I take a moment, catch my breath, unload the groceries, and carry on.

And in another week I’ll do it all over again.  Why?  Because the alternative is something I cannot, and will not ever accept.

 

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Every cancer patient (and many more patients of other sorts, rest assured) are all too familiar with prescription drugs.  Not just the stuff we get intravenously, but also the stuff we have to take by mouth.  Pills in particular.  These pills run in all sorts of sizes and arrangements, from tiny to horse-sized, from basic to sugar-coated, chewable to grab a cup of water you’ll need it to swig this sucker down.  There is one pill, I’ve discovered, that is the universal wonder-pill that just about everybody has had to take at one time or another.  This pill is called prednisone.  

There is a good reason why doctors seem to use this as a fall back.  I alone have used it to coincide with my chemotherapy at age sixteen, and it has been a blessing when pre-medicating myself for CT scans so I don’t go into anaphylactic shock due to the contrast dye.  But this little miracle pill does much, much more.  Prednisone is a corticosteroid, and is used in a wide array of treatments from arthritis to asthma, from lupus (yes, lupus) to allergies.  It’s not always in pill form for all of these, but the pill form is what I’m here to talk about.  To sum it up, Prednisone is a miracle pill.

It’s also a bit of a bad pill, too.  See, prednisone is one of those medications that has equal benefits to its horrible side effects.  In my personal experience it’s caused some rather crazy mood swings (giving a speech about your summer vacation to a class and then randomly breaking down crying when you announce…”England was so fun..but now I have cancer!” is one of many examples I can think of), all sorts of fun water-retention that leads to some rather awkward weight gain.  It also gave me a horrible craving for eggs.  But the list goes much, much beyond that.  Depending on your dosage it can also cause glaucoma and increased blood pressure.  It gets even better if you take it over a long period of time, like a few people I know do.  Cataracts, high blood sugar that can lead to diabetes, increased risk of infections, osteoporosis, and thinning skin leading to easier bruising.  Those, my friend, are the common side-effects.

But let me tell you, when you discuss prednisone with somebody else who’s experienced this wonder drug as well, none of these are the first thing that comes to a prednisone-victim’s mind.  Not the benefits, not the harmful effects.  No, the first thing they think of is the taste. 

That’s right, the taste.  Prednisone by far is the worst tasting pill there is and in no situation have I ever seen it sugar-coated.  It is likely one of the medications that I would not object to having a nice sugar-coating to spare my tongue.  It’s almost like walking into a room where somebody’s been sanding and burning plastic and walking around with your tongue out to taste the fine particles, which leave an acrid burnt taste in your mouth that no less that five pieces of the strongest mint gum will get rid of.  Many suggest, who have never had it, to wash it down as quickly as possible and to not let it sit on your tongue.  Yes, because I let it settle and let it melt on my tongue, clearly I am not swallowing it fast enough.  I love the offer of advice, but really, would I be complaining if I didn’t swallow it as fast as humanly possible?

As I sat in the chemo chair yesterday talking with my mother prednisone came up.  I don’t recall the entire conversation, but the minute I said that magic word, ‘prednisone’, I watched the lady in the chair next to me cringe and stick her tongue out as if she could taste it simply by mentioning it.  For me, and for her I later discovered, we were only subjected to the tiny pills.  Did I mention that for some people, like a lot of liver transplant patients, these pills come in a glorious horse-pill or enema size, too.  Count your blessings if you only have to take it once or twice in a nice tiny size, because these patients take those horse pills daily.

 

It should really come as no surprise that when you do a Google image search for ‘taking prednisone’ this image popped up for me. Remember that weight gain? It can be a real PITA.

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