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Well, if that title doesn’t throw you off a little…I’m not entirely sure what will.

In truth it’s going in about three different directions.  First and foremost, is the fact that I have been terribly absent in my writing for a while and for this, like all the other times, I profusely apologize.  Not just to those who read this for entertainment, but for those who read it to keep up on my health … and also to myself.  I really need to sit down and focus on writing a little bit more.  Second attributes to the absentminded part.  Which I will have to delve into with much more detail further below.  But third, which is actually what I intend on starting out with, is the Spoons.

That’s right, spoons.

Chances are if you have ever heard of the spoon theory you can gauge where this is going.  Now, the spoon theory is in no way something I created, but before reading on in my post I would highly recommend either reading it, listening to it, or watching it at the original author’s website.

Copyright Christine Miseradino

Christine Miserandino’s Spoon Theory

 

Yes, there are some very, very distinct differences between Christine and myself, the most obvious being her having lupus and me having a trump card of cancers.  It doesn’t change the fact that just about everything she states here strikes a chord for me in a way that I’ve never really been able to articulate fully to all but a tiny, tiny handful of people.  So I really hadn’t ever tried.  Having the benefit of, for the most part, not looking sick and being able to function on a visually normal basis has made this possible for me over the last eighteen years.  There are and were a few exceptions.  So what brings it on now, then?

One of those exceptions.  Guess that means it’s story time, right?  I hope you like to read! (I mean, if you’re here I’d hope that’s at least part of the case…because this is going to be a bit long.)

This part is going to have to go all the way back to 1998.  I was pretty normal for a 6’2″ beanpole and I had what I considered to be two very close friends, BFFs as my daughter would call them now.  Thick or thin, lunch, after school, between classes, pretty much any time we could wedge in to hang out together we did.  A terrible trio of slightly warped blondes who defied popularity, loved Metallica and Celtic music, and spent a lot of time making up really bizarre inside jokes that left everybody else around us scratching their heads and passing us wary looks.

One, Jenn (who I will unabashedly name here), and the other who I will simply refer to as ‘3’ for the purpose of privacy.  This doesn’t mask who it is to those who were there in High School with me and it doesn’t really mean to since I’m not telling this story to tarnish her image or drag old dirt out.  It’s simply a story to help understand where I come from and what it is that shaped my outlook on life the first time I had to deal with cancer.

Jenn, who I have mentioned as my ‘Hospital Buddy’ several times in the course of blogging here, started her medical trek a few years before I did.  I don’t envy her dive into it, either.  Getting sick in Middle School is quite possibly the worst time you could do it.  Pre-teens and young teens are often, without a doubt, insensitive, mean, and very insecure.  Particularly to each other.  We’ve all been there and know there are exceptions, but in a big group at that age we’re a pretty judgmental bunch still trying to figure ourselves out, so the search for normalcy is a common struggle.  While popularity is up there on the top of the totem pole for a few, most of us just aimed to keep ourselves from the very bottom, flattened under the weight of our peers.  Hovering somewhere around the middle was where most of us settled.  When you get sick you start slipping.  When you get visibly sick and people hear about it, you go straight to the bottom.  Jenn’s body started to fail her rapidly and the methods taken to bring her body back into full swing made it very well-known to her peers that she was no longer normal in their eyes.  To make a long story short, she lost a lot of friends.  It’s devastating enough going through something that paints you as abnormal at any age, but at that age when so many are still trying to maintain their self-image it slams as a double blow. She maintained very precious few good friends. Those that had extraordinary maturity for that age and defied social stigma to remain friends with her in her time of need helped her through those years and beyond.

And, in a way, also helped me.

About a year before my own initial cancer diagnosis Jenn, 3 and I developed what I considered to be a very close bond.  The three of us were pretty much against the more popular crowd, which, by the time you’re in High School pops you into one of those cliques.  Ours drifted somewhere between the Music/Drama/Art crowd including the ever-popular 90s flannels tied around our waists  and ‘goth’ mentality without the stereotypical heavy black makeup.  Not to mention we giggled too much to be outwardly goth, never did drugs so we didn’t really fit into the stoner crowd (though most of our friends resided there), and spent more time drawing or writing up our own stories to be too worried about what the rest of our High School thought of us.  Considering our graduating class was over 700 in size … this wasn’t really too hard to do.  Staying away from the jocks and the popular kids who we weren’t too fond of was actually a pretty easy feat and we liked it that way.

Near the end of my sophomore year, however, our bond was put to the test in a way that was completely out of our control.  I was diagnosed with Hodgkin’s Lymphoma shortly after my 16th birthday.

To paint a picture, I went from relatively chipper to pretty dour right off the bat.  I didn’t even know what Hodgkin’s Lymphoma was when the doctor gave me the diagnosis.  What didn’t help is that there was a good month and a half of tests, biopsies, antibiotics and the like just to diagnose what the heck I had, so it started adding anxiety to my already insecure teenage attitude.  When the bridge between ‘Hodgkin’s Lymphoma’ and ‘Cancer’ was finally connected … my world shattered.  I didn’t feel sick.  I didn’t look sick.  The word cancer back then to me meant certain death, too, since that’s what you do when you have cancer…right?  Lose your hair, end up on a bed stick-thin, and die.  I was sixteen and facing the most amazing trip to England that I had been fundraising for with Girl Scouts for two years and now I had not one, not two, but a slew of doctors from several different hospitals all telling me that I shouldn’t go.  I had two weeks between diagnosis and England and the stress of everything was beginning to make me crack.  I didn’t want to die.  Two years of planning, fundraising, preparing…

So I did what any stubborn sixteen year old would do.  I went to England.

I should point out that my mother and I did some pretty heavy negotiating and agreed to get all of my pre-chemo testing done before I left.  Which also put me smack-dab into the chemo chair the day after my plane landed back in town.

All the while I started to see a shift in the way both Jenn and 3 were treating me.  While Jenn was on the phone with me immediately after chatting about the diagnosis, 3 didn’t seem sure what to do.  We were both in that boat in truth, as I was clueless as to what this would bring.  I also can’t blame her for taking a step back to try to figure things out.  One of her closest friends had been diagnosed with cancer and she had pretty much the same experience with the disease that I did.  None.  I believe she cared, but she didn’t know how to handle it.  She stuck around, however, through the entirety of my treatments.  3 was a pretty positive force, but I will never know for certain if it was because of Jenn’s overwhelming support that made her feel it was something she had to do…or if she truly wanted to stick around but the general ‘illness atmosphere’ put her into a very deep discomfort zone.  Because she stayed, however, she and Jenn both got to see every brutal detail of what cancer brought to the table.  I didn’t spare them details when we’d talk because those two were the only peers I could talk to about it.  Or so I thought.  Jenn took it in stride because she had been there, she was living this with a different disease but the experiences were all too familiar to her.  Even some of our medications were the same.  We tried to be inclusive of 3, but I don’t think we ever saw that she might have felt left out, uncomfortable…or just unsure how to break away without hurting me when I was obviously at a pretty bad low in my life.  Where Jenn would come to doctor appointments, 3 would start to opt out.  Hanging out at one of our houses?  More often than not it happened at my place or Jenn’s, but only sporadically at 3’s.  Attending Girl Scout meetings?  Jenn kept coming, 3 eventually dropped after missing most of the meetings.  She stuck it out admirably until maybe two to three months after my last chemotherapy and I was announced in remission.

Because of what I thought was unwavering support from both of them at the time, I was able to pull my head out of where the sun didn’t shine about halfway through my treatments.  My negativity slowly lifted towards the optimistic, but not before it had me alienated by quite a few people outside of our circle of friends.  Each lost friendship hurt, but I had two friends that I could count on…and they kept me going.  My attitude improved, my outlook improved.  Hand in hand with this I began to mature in a way that only a life-threatening situation can really do to a teenager.  My perspective on life changed, the way I treated people changed, and I began to grow in confidence that there was a light at the end of the tunnel.  I mean, sure this was a poor situation, but it didn’t mean I was done for.  As far as I could see?  I had beaten this.  I was ready to move on in life with a few ugly setbacks, but there was nothing that could hold me back.

Which is why it was so confusing for me at the time, why it is she chose when things were getting better to break away.  Not to mention the breaking away wasn’t in a pleasant way at all.  We’re talking a lengthy letter pretty much expressing all the anger, resentment, hurt feelings she’d likely been keeping bottled up for near a year delivered via e-mail and followed by an avoidance that would’ve put a four block perimeter between us in even that crowded school.  The type of letter that delivers so much articulate pain all at once that you just don’t come back from it.  There was no room for reconciliation, no room for discussion, and a very clear message that there was no desire for it.  Only a permanence that bordered on raw pain that came completely out of left field for not only me, but Jenn as well.

I might have been a pretty mature sixteen year old, but I don’t think there’s a teen out there that would take a hit like that without responding in one form or another.  For Jenn it was silence, avoidance, discomfort in regards to 3’s letter.  She had never been confrontational in High School, and she had been blind-sided into shock.  For me, however, I still had a bit of teen-rage in reserve and 3 lit a fire that only turned into slamming the nail in the coffin of our friendship.  She gave me an outlet for my anger and it simply deteriorated from there.  To refer to the Lion King, our trio went down to two in one e-mail.  Even years later Jenn and I have looked back on how we would’ve done things differently, but have come up empty-handed.  There are just some things that can’t be truly rectified I suppose.  After all of it I’m not angry at her … nor am I angry at myself or Jenn or how it happened.  I simply learned the hard way on who, where, when, and how to share my cancer history and to let people know up front so there were never any surprises.

I’ve been complimented on my attitude about handling cancer, how I go on without bemoaning …I’ve amazed doctors with my fortitude and how I take things in stride.  Despite fighting cancer for 18 years I’m still not rolling over, it’s just not in me.  Call it stubborn, I’ll take that.  Call me a fighter?  Sure, I mean a good stiff wind might knock me over, but we’ll go with that.  I’d like to think more along the lines of having goals that I’m not really bothering to let my disability interrupt.

Yep.  I just broke down and called it a disability.  Technically with the side effects I’ve been going through with lung cancer I should have been officially calling it that for a good four years now.  Complete with a roller-derby wheel chair jockey handicapped placard in my car.

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

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

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

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

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

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

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

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

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

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

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

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

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

A mistake I will never, ever make again.

 

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

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

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

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

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

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

Radiation.

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

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

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

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All right, I know what you’re thinking and the answer is no, I’m not turning into some sort of a fashion blog.  In fact, the only fashion I’m interested in is the comfortable kind.  Looking nice is only second in my mind, but I have to keep in mind that for some it may not be the same.  When it comes to preparing for scans and infusions, you have to consider a little more than when you go to a regular doctor visit.

Scans

A lot of the time scans come with their own dress codes.  CT, PET, MRI, all of them!  Depending on the technician you get, you may even be able to avoid changing into a hospital gown.  First of all, and most importantly is to avoid metal.  This may be impossible for those that have metal anywhere in their body (metal fillings do not count, oddly enough).  For the rest of us it means no earrings, necklaces, watches, glasses, sometimes even rings (though I’ve never had to remove my wedding ring…which is probably a good thing since it won’t come off anymore.)  This doesn’t mean you can’t wear them to your appointment, but you can’t wear them during your scan.  This means your possessions will be left in a locker or a changing room and while they might be locked up, it’s usually not super secure.  So if you have fancy valuable hand-me-down earrings from your great-grandmother…leave them at home.

I tend to come expecting to have to remove very little, my bra, glasses and my watch for example will all come off, but the rest remains on.  If you have sweat pants, leggings, shorts, comfy skirts or yoga pants with, again, no metal, those should all be able to run through the scanning machines.  Shirts follow the same vein, avoid buttons and snaps, zippers or buckles and you should be set.  Only once was I stopped by a technician to change into a hospital gown when she saw that I had decorative screen printing on my shirt (this was for a run-of-the-mill x-ray).  This may happen every now and then, but typically if you walk in wearing a plain t-shirt and yoga pants they’ll give you a pass.

Chemo

Going to chemotherapy is a whole different animal.  There’s a good chance you could be sitting in a chair for up to eight hours!  It is so important to dress comfortably.  Everybody has different levels of comfort, so don’t think I’m telling you to wear sweats and a giant old t-shirt unless that’s the way you roll.  Here’s some deciding factors about chemo that you’ll want to know when it comes down to what to bring.

  • It’s cold.  This seems to be a pretty common thing in most clinics and hospitals, and it’s not something you can really change.  Chemo can make this worse.  Think of it this way, chemo shrinks your veins.  Less blood flow, less circulation, the easier it is for your appendages to get cold.  Some clinics or hospitals have heating pads or warm blankets and can offer coffee, tea, hot cocoa or cider for their patients.  Not all do, however, so know what is going to be offered and plan to bring your own if you can’t do without.  A simple throw pillow and a stadium blanket are often perfect.
  • There’s not a whole lot to do.  Some places have TV, most have magazines or books, and now you can typically find wi-fi service there.  It still doesn’t change that you’ll be on your rear for a while.  My best advice is to bring your own stuff.  Have work?  Bring it with.  Homework? That can come.  Want to finally get a chance to write that novel you’ve been dreaming of?  Well, you can bring it with, but I can’t really guarantee that chemo-induced writing will be your best quality work.  But you can always bring a laptop or a tablet or a phone or a notebook, all will work.  Books, magazines, drawing pads or writing notebooks.  Portable gaming systems, too.  All those things that you just never have time to sit down and do?  As long as it doesn’t require a ton of space or epic amounts of materials, bring it.  If that still doesn’t appeal to you, snag an eye mask and some earplugs and enjoy a long nap.
  • It can be lonely.  If you don’t have an infusion buddy–get one!  Time passes quickly with another person there.  This also gives you the perfect excuse to bring board games.
  • Not all places offer snacks.  Bring some!  But remember not everybody will do so, so try to bring something that isn’t super aromatic.  Chemo can make people sensitive to certain smells, if you bring in a burger and fries or a homemade dish rolling in garlic you may accidentally cause some unwanted vomiting in the infusion lounge.  Not the best way to make friends with your fellow patients.

Remember that your comfort is the most important thing.  If you’re not comfortable running out of the house without make up on, then why change that?  Be comfortable.  What other people think is the least of your worries.

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Fuzzy socks. While the traction is iffy these things are wonderful companions for chemotherapy, CT scans, and your friend’s house that has those perfect hardwood floors and the long hallway.

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So, I saw this being done around the web a bit here and there, one of those things that randomly pops up and a good chunk of people hop on the bandwagon.  It disappears, and then tends to show up all over again about a year later.  Considering at sixteen I was in a rather unique situation, I figured I’d try my hand at it.

Me at sixteen with my friend and her brother in 1998, shortly before being diagnosed with Hodgkin's Lymphoma

Me at sixteen with my friend and her brother in 1998, shortly before being diagnosed with Hodgkin’s Lymphoma

Dear…well, me,

Happy Birthday!  It’s me…you in about fourteen years.  Yep, we’re still tall, that doesn’t change.  Shoes and clothes are still hard to find, but in about four years you’ll discover a few places that actually sell your size.  So no worries, you won’t be buying men’s pants for the rest of your life.  Enjoy and savor that feeling of finding a pair of women’s pants that you step on because they’re too long, I know I do, even though sometimes it results with fraying on the hem.  The good news is that you’re still at least semi-OK with a sewing machine, so it’s nothing you can’t fix.

That aside, I wanted to step into a more serious topic.  Remember back in science class in junior high when they were discussing diseases?  Particularly cancer?  Distinctly recall thinking…”That won’t happen to me,”?  Yeah, we should probably talk about that.  The fact is that you’re not immortal…far from it.  In less than a month you’re going to find something that’s going to change your outlook on life forever.  A small lump just above your collar-bone.  To spare you the months it’s going to take for the doctors to figure out what it is, I’ll just tell you now.  Look up Hodgkin’s Lymphoma.  Telling you to google it would probably go over your head, so go to the library, check out a book on cancer.  Figure out where I’m going with this yet?

Basically you’re about to head down a long and rough road.  It’s going to make high school considerably more isolating, but I’m not here to write a letter that’s going to depress you into an early suicide because there’s hope.  A lot of hope.  See … you’re going to fight.  I’m not going to really give you a choice here, because without you I wouldn’t exist.  And the picture I’ve enclosed?   Those two kids wouldn’t exist, either.  That’s right, they’re yours.  Didn’t know you could make something that cute, huh?  Me either, it still baffles me.  Also, see that incredibly good-looking guy beside you with a smile to die for?  He’s yours, too.  So when you don’t get asked out to any dances the entire time you’re a teenager, or when you get turned down by the one guy you do ask…or when you find yourself depressed because none of your crushes reciprocate…?   You get him, and he’s worth it.  No, I’m not telling you whether or not he’s taller than you, either, because that won’t matter.  He’s amazing, that’s all you need to know.

On another note, when things start getting rough with your best friends–you know the two I’m talking about–try to be patient.  Try not to jump to rash actions when one of them starts to pull away.  It’s going to hurt, ending a friendship never feels great.  She’s scared, and what you’re going through…she has no way of understanding.  Some people will never understand and the best way that they cope is to pull away.  Find it in your heart to forgive, though, because she doesn’t really know any other way to react than lashing out.

Don’t wait eleven years to thank Jesse.  Hell, do it before High School is out.  He found the lump in your collar and if he hadn’t you wouldn’t be around beyond eighteen.  When it comes to Jenn…take her word first.  She’s never lied to you, nor has she had reason to, so if somebody else tells you something about her … take five minutes to think, remember to listen to Bryan (you’ll know who this is by the time you get to this point anyway), and then ask her instead of taking somebody else’s word for it.  The girl sticks her neck out for you, and you do as much for her…just…when this one time comes?  Do not go off writing one of your ranting letters.  Those things get you into more trouble than they’re worth.  Type them, get them out of your system, then just put them in the recycle bin.  Also, avoid discussing politics with people.  This gets you into trouble now and then and ends up not worth the emotional irritation.

Beyond that…well, the chips are going to fall where they do.  Give Shannah (Cookie) a big hug for me, make sure Grandma B knows you love her, and be patient with your mom.  I know you’re scared, but she’s scared too.  Remember what happened to your sister?  Everybody was afraid then, everybody will be afraid again…but you can get through it.  Just … patience.  You could really use some.  Try to stay positive and keep your chin up.  There’s a lot of good on the other side of this mountain, so just remember to bring your hiking boots.

And some chocolate.  Bringing chocolate never hurt you.

Sincerely,

Me.   Or you.  In fourteen years.

P.S.  – You could really do to stay away from the spiral perms, just sayin’.  They never get any better, so I’m not sure why you keep getting them.

Also, make sure this picture doesn't happen. I'm begging you.

Also, make sure this picture doesn’t happen. I’m begging you.

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Over the last fourteen years of battling cancer I can say with certainty that one of the most overwhelming feelings that comes with the diagnosis is loneliness.  Most of those I know that are struggling with cancer personally don’t know many people inside their social circles that are going through the same thing.  Cancer, while unnervingly common in our society, is still rare enough that you won’t often run into a group of people already established as friends suddenly all being diagnosed with cancer around the same time.  I’m sure it may have happened, but it’s not a typical situation.  This is one of those reasons why there are support groups out there…if you don’t know anybody in your situation, these groups are out there to provide the links to possible friendships so that you can get to know somebody like you.

Now, I had the luck of having a best friend who was very much a hospital veteran by the time I was diagnosed with cancer at sixteen.  She’d been going through her own medical problems since junior high school and a lot of her medications were similar to the ones I would be taking during chemotherapy.  We had known each other since third grade initially, but due to my elementary school hopping we ended up in different schools until about tenth grade.  Long story short, we became fast friends and when I was suddenly facing cancer she was the only one who I felt I could talk to about all of the stuff I would be facing.  We jokingly called ourselves ‘Hospital Buddies’.

In my experience I feel that everybody should have a hospital buddy.  Not every hospital buddy will be a veteran of the IV pole, but a hospital buddy should be somebody who is a solid rock for you and understands exactly what you’re going through.  Especially when chemo comes to town.  A lot of chemotherapy treatments involve lovely side effects that tend to leave you unable to think clearly much less function well enough to operate a vehicle or chase down a bus.  So, in short, bringing somebody with you to those treatments is not only a morale booster, but also a necessity.

At sixteen I always had my mother with me–most of my friends could not make it because my infusions were during school hours.  It was rare, however, to feel lonely up at Doernbecher’s Children’s Hospital.  They made it a point to have the atmosphere as welcoming as possible for the patients treated there.  From board games to video games, books to toys, the patients were always provided for.  It wasn’t uncommon to see the kids running up and down the halls with their IV poles in tow, giggling and laughing.  They were never stopped by the staff or any of the adults.  In retrospect I can only imagine that seeing them with that energy and being capable of even running and smiling was much more important than making sure nobody ran in the halls, especially to their parents.  Most hospitals could and should take example from the way Doernbecher’s Oncology sets up shop.

I had this silly notion at the age of twenty-one when I relapsed that I would be entirely too grown-up to have my treatments done at Doernbecher’s…even though the offer was on the table.  Looking back, I think I should have opted for it.  I was greeted by a very different arrangement when I went to Kaiser Interstate.  The room was large with several beds that were separated by curtains, each having their own small television and a long row of windows behind them.  At first I was happy with the idea of having a television to watch.  It was peaceful, which I didn’t mind, and I was a bit shocked at how few patients there were alone, quietly reading books or flipping through magazines.  For me, traveling to Interstate was a lot shorter and more convenient than driving all the way up to Doernbecher, especially since I was facing chemotherapy during the winter instead of the fall.  This meant, of course, having somebody drive me there.  Even with the closer distance it was still a trek across the river from the East part of town…at best I had a thirty minute commute, mostly by freeway.

For the most part the nurses didn’t seem to mind as my mother drove me to and from most of my infusions and sat quietly with me at my bedside.  I was doing chemotherapy three times  a week, then I would have three weeks off and then start the whole thing over again.  The third treatment on my first week of infusions I had the pleasure of having my boyfriend in town to drive me there before I was due for a head shaving party the following  evening.  As it was he lived a good two hours away from my parent’s home, so commuting to Interstate tacked on an additional thirty minute drive that nipped at his gas tank.  Per my previous two days routine, he joined me as my mother had joined me, settling down to sit by my bed to keep me company for the six hours I would be enduring my infusion.

At this point a nurse meandered over and informed me that I was not allowed visitors in the infusion area so that none of the other patients would be disturbed.  I looked to my left and right … there were exactly two other patients there and we were largely spaced out.  Friday was not typically a very busy day there unless a three-day-weekend was approaching.  Before I could argue, my boyfriend left, assuring me that he’d stick around in the cafeteria and keep himself busy.  I was incensed, not at him, but on behalf of him.  My treatment was six hours long.  He had driven for a total of two and a half hours and he didn’t live in the area, so he had no idea of what to do aside from sit and wait outside.  Not to mention that he hadn’t brought a book or anything because we’d planned on sitting and chatting quietly or watching whatever daytime television looked mildly amusing together.  Neither of us had a laptop, nooks and kindles didn’t exist, and we didn’t own a portable gaming device of any sort.  I wanted to argue and throw a fit.

…and I didn’t want to be alone.  Chemotherapy can make you overly emotional, so while I was feeling miserable sitting there for six hours I seemed to end up doubly so.  Half the time I caught myself hiccuping sobs, blinking back tears, and glaring at the nurses as they walked by.  I could turn the television up alarmingly loud and nobody would blink, but for some reason my boyfriend couldn’t walk in and simply sit next to me without the nurses getting up in arms.  After six hours of this building up I was on the verge of a breakdown.  When my infusion was over  I was unhooked from my IV and led into a room to see a video on giving myself shots of Neupogen to help my white blood cell count.  To my nurse’s surprise I wasn’t fully coherent (third day in a row of chemo at this point), was over emotional, and had been building up a good adult-sized tantrum for the entirety of my infusion that day.  They saw that I wasn’t processing the video fully, so they pulled out a cork and told me to inject a needle into it to help me understand.  I stared at the needle, couldn’t help but make the connection that I was going to have to do this to myself (a brand new experience for me), and proceeded to outright bawl.

For ten minutes they tried to reason with me, but all I did was sob.  I couldn’t get the needle into the cork and kept fumbling it onto the ground.  The video was making me cry about absolutely absurd things.  The nurses took my boyfriend away.   Not the most reasonable thought process, but chemo can mess with your brain on so many levels.  Finally they broke down and brought my boyfriend in.  He watched the video with me and then helped me home.  The following night he help me cope with giving myself my own shots for the first time.

I want to point out that this wasn’t typical of my treatments.  After that I was never given any problems with bringing one person with me to chemo.  Even with that said I should have gone back to Doernbecher’s.

Breast cancer offered a whole new situation.  At this point I was a mother of two, happily married to said boyfriend, and very much off of my parent’s medical insurance.  The insurance provided by my husband’s job led us to the Vancouver Clinic for my treatments and I couldn’t have been happier.  Though I’ve never planned on bringing in a fist full of people with me to my treatments, they had no qualms in my having guests.  The infusion lab is smaller than that of the lab at Interstate and yet the nurses’ were constantly asking if they could search out a few more chairs for me should I have more than one guest.  They even offered snacks to those with me.  Our chairs were faced out so that we could see outside and even though my view was of the large parking lot it certainly beat staring at the nurse’s station while they tried to work.  I imagine that would be a little unnerving for them, too.

So, my advice?  Get a hospital buddy.  Assuming you can bring one.  If you can’t…honestly I’d say bring one anyway and throw a fit or something, because nobody should go through this alone.  (Come on, my advice can’t always be sage and useful.)

This is my hospital buddy. It's just a shame that Nebraska and Washington aren't easy commutes, so we have to skype to make it happen. It still works though!

This is my hospital buddy. It’s just a shame that Nebraska and Washington aren’t easy commutes, so we have to skype to make it happen. It still works though!

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So I was driving my kids to school today and this sorta…popped into my head.  I don’t usually do two posts in one day, but it had to be put down somewhere and I feel it’s a bit too big for Facebook.

What if…?

I once was asked if there was one wish to make
Would it be that my cancer had given me a break.
That instead I was a teen who had not a care
Without all the appointments and a head full of hair.
To do as I pleased once out of school
To travel, experiment, to make my own rules.
I’d never once have to wake up in the night
Where my joints ached severely and standing, a fight.
No chemo induced illness, no fatigue or depression
No radiation and cancer’s unnerving progression.
To take life by the reigns, make my own quests,
Perhaps my husband might get a wife with two breasts.
The only worry my parents may know
Is if their daughter on Christmas might be bothered to show.
And insurance money that would not be spent
Would go to the people far less fortunate
For those patients the nurses would now have more time
There’d be one less fighter standing in line.
At night my doctor would not have to find
A treatment for me that to my body would be kind.
No invasive surgery, no hospital stays
Instead off to England and Ireland for a few days.
But to my friend’s surprise my answer was so:
I shrugged, splayed my hands, and simply said no.
For if cancer had never been part of my life,
I might not have been my husband’s wife.
To college I might not have ever gone,
For insurance I had to go full-time or have none.
Without this I might never have met
The man who I married, and that I’d regret.
My children, I might have, but not quite the same,
Different father, different city, perhaps different names.
And while I would love them as I love my two,
Replacing their faces, I just couldn’t do.
Without all of this I wouldn’t have my home,
Or all of my in-laws and some friends I have known.
My understanding of illness would severely lack
My compassion for friends thus would be off track
No hospital buddies, no survivor friends
No relays, no support groups, the list doesn’t end.
While cancer is something I’ll always wish gone
I would not be me if something hadn’t gone wrong.
For sometimes the worst always brings out the best.
But if you know me, well … you know the rest.

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When I was sixteen going on seventeen I was a brand new cancer survivor, stumbling out into the world with a shiny new perspective and outlook on life.  But with this new outlook I suddenly found myself very much in a situation set away from my peers and I couldn’t help but look around the sea of high schoolers and feel more like I was stuck in a small room without windows or doors.  I didn’t lack in friends, but there were very few that I could actually feel comfortable opening up to and speaking to about what I had gone through.  This came from a particular vulnerability that I felt, too, since shortly after being announced in remission one of those close friends that had stuck it out through chemo with me up and abandoned me the moment it seemed survival was in the cards.  Losing a friend in the way I did her was a rather cruel smack of reality to me, as she seemed to take the first two months of my treatments when I was the most angry and vulnerable and hold them against me.  While others noticed my attitude slowly improving even with my chemo-induced-illness increasing, she continued to only see me as the whining first-diagnosed teen who was certain the world was against her.  I attempted, in a rather unsuccessful (and likely immature) way to find out several years later why she suddenly snapped at me and attempted to pull another friend away from me in the process.  The only thing of value I took from her reply (the rest was a few strings of obscenities and veiled insults) was that she was quite simply sick of being around somebody who acted like she was going to die.

To be quite honest I can say that I never, ever, thought I was going to die.  I was terrified of the unknown chemotherapy and what it would hold.  I was afraid of losing my hair.  I was afraid of having yet one more thing singling me out, as if being 6’2″ and socially awkward as can be wasn’t enough.  But I never let it cross my mind that I would die, because as a teenager, even a teenager with cancer, I still thought I was invincible   At the time her words shook my trust in many of my friends, leading to unnecessary fights, bouts of unjustified jealousy, and finally a sobering realization that the world will go on without me if I didn’t get off my rear and keep up.  It took until I was nineteen and living in a new town for college where I knew quite literally nobody to finally open up and attempt a fresh start.

During those frustrating years I did attempt now and then to reach out unsuccessfully to cancer survivor groups, becoming discouraged when I found there were very little offered to my age group.  My mother would occasionally point me in the direction of some random survivor, but for some reason I felt incredibly uncomfortable if I wasn’t the one reaching out.  Unfortunately the few times I did reach out, I got rather unnerving and disappointing results.  When organizations finally started posting websites I found myself coming across a cancer-survivor website that I thought might be helpful.  However, when I inquired about their support, I got a rather snobbish reply about how the site was mainly for breast cancer survivors and that while they hoped I found the type of support I was looking for, that they simply could not be found there.  The tone in and of itself prompted me to give up for a very long time.

It was at this point that I discovered that a lot of types of cancers seem to come with their own cliques.  The breast cancer survivors in one arena, the teen cancer survivors in another, prostate cancer survivors over in the lunch room, and the ovarian cancers sipping coffee at a tavern downtown.  Heck, we all get our own ribbons upon initiation to our clubs and some select cancers get their own month to spotlight how much more their cancer should be fought than the others.  Sadly, there are only twelve months in the year, and while some cancers share months, usually one will be far more outspoken than the other when all are equally deadly and should be equally eradicated.

When I ended up with breast cancer at the age of twenty-seven I found myself in an even more awkward position.  See…the world tends to think of Breast cancer as a disease that tends to only happen to those over forty.  There are the rare cases that happen in their thirties, but it seems people think it impossible to happen to a woman in her twenties.  I get a lot of comments regarding how I’m too young for this sort of thing to happen and I have to gently remind people…nobody is too young.  Nobody is exempt.  Yet I still get strange looks from the technicians when I go in for my yearly mammogram.  At one point I was called back and asked “Why are you even here? This has to be a mistake.”.  I refrained from flashing the fact that I only had one breast, knowing that my age is a bit of a surprise for a cancer survivor.  Instead I pointed out that after losing one breast to cancer already, I’d like to think coming by yearly to make sure I get to keep the other one wasn’t a mistake.  Even if I wear my pink ribbon hat and necklace people still aren’t convinced until I have to tell them the sacrifices I’ve made to combat the disease.  I suppose I’ll be tossing around my credentials til’ I hit forty at this rate.

Then there’s Pinktober.  I’m in a unique position when all the pink starts showing up in October to not only see the benefits but also the drawbacks.  Seeing as I’ve survived Breast cancer but also have survived Hodgkin’s Lymphoma and am now facing Lung cancer, my perspective is a bit more rounded (probably a lot more rounded than I’d prefer!).  I often wonder …  why doesn’t everything turn blue in November?  White in September?  All the other months seem to be mentioned in passing by while October is a sea of pink and an excuse for companies to use a little more breast in their advertisements.  There are so many breasts that it seems to almost defeat the point.  I get that they’re trying to encourage preventative screenings and such, and hopefully a cure, but at the same time…what of us that didn’t make it?  Are we nothing but a pair of lost breasts?  What about those of us who sacrificed our breasts to live?  Ultimately do we lose our fight because we lost our breasts or are we the only winners because we walk away with our lives?  While I don’t mind pink, as I know so many people wear it not for the endangered breasts but for the survivors and fighters they know, or the loved ones they lost  However it sometimes turns me off from products, knowing only a very small portion of what is earned will actually go to help find a cure.  Breast cancer is not about breasts, like any other cancer it’s about the life it threatens.  Hodgkin’s Lymphoma was no less dangerous to me than breast cancer was, and nor will the lung cancer I’m now facing.

Remember one thing, when you think about a survivor…a fighter…or somebody you lost to cancer.  We are not colorful ribbons, months in the year, or random body parts.  We’re mothers, fathers, sisters and brothers.  Sons and daughters, aunts and uncles.  Grandmothers, grandfathers, granddaughters and grandsons.  Nieces, nephews.  Best friends and acquaintances.  And all of us want to be known as survivors, regardless of what kind of cancer we face, and we all want to see every type of cancer erased to be nothing more than a memory.

Despite my troubles in high school and issues with trust there are always those friends who stick around no matter what. Even if half of them live across the country, they remain priceless to me.

Despite my troubles in high school and issues with trust there are always those friends who stick around no matter what. Even if half of them live across the country, they remain priceless to me.

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