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Posts Tagged ‘cancer’

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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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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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.

unnamed

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

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

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

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

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

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

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

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

A mistake I will never, ever make again.

 

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

I should do something about that.

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

And so forth.

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

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

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

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

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

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

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

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

Cheers!

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

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

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

The short list of crazy?

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

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

Car Chaos

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

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

Backyard Flooding

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

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

Parenting Challenges

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

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

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

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

Radiation Reality

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

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

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

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

Under One Roof

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

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

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

“My roof…is brand new.”

“..r..really?”

“Yep. Just replaced it last Summer.”

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

“Oh…w..it looks old.”

“It’s not.”

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

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

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

This received a long silence from me.

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

“I haven’t started chemotherapy yet.”

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

Chemotherapy … again

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

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

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

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

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

Image

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

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

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