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Posts Tagged ‘hodgkin’s lymphoma’

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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Ok, so this is something that’s bugged me for a very, very  long time now.  I thought, perhaps, that I was imagining it when I was a teenager looking into possible support groups, that there was a bit of a cancer hierarchy.  The only support groups I could find were for women in their 40s and up (which is ancient to a 16-year-old) who had gone through breast cancer alone.  When I was re-diagnosed I found the same situation.  The only support group that was relatively close to my needs was at my college campus: which consisted of people my age who had known somebody who had gone through cancer.  Usually a mother, father, or grandparent.

But that’s not where I’m going with this.  See, on the list of importance Hodgkin’s is somewhere on the low scale, mostly affecting people who are young.  Non-Hodgkin’s is far more popular, and diverse, and therefore given much more attention.  But not nearly as much as breast or cervical or ovarian or prostate.  However, when I was first diagnosed with Breast Cancer it wasn’t a sudden get-in to the pink cancer club.  It was disbelief.  “What? You’re 27?  Everybody knows it doesn’t happen that early. Go on your merry way, now, back to being a normal twenty something.  This club is for 40 and up.”  Of course, until I had a breast removed.  That apparently makes you qualify for the club.

Now…now lung cancer.  You see, for me this is all very simple.  It’s a cancer.  Cancer sucks.  I do what I can to get treatment, same as the last three times thinking that there’s no possible way I could face any more disbelief in my situation.  Most people I know, including doctors and nurses, are used to my odd predicament.  They don’t bat an eye when I say, “Guess what!  I’m back!”.  My insurance company, however, is convinced I’m doing this to myself.

Ever since they’ve processed my claims I’ve had non-stop pamphlets on how to quit smoking.

You know, that’s funny, since I’ve never smoked a day in my life.  I never got a pamphlet on how to prevent Hodgkin’s.  And instead of a pamphlet on how to prevent breast cancer I was showered with pink, given stuff on how to find support groups and tips for early detection from my insurance company.  But, now that I have lung cancer, I should have been able to prevent this.  All that smoking I didn’t do has caught up to me!

Funny how certain cancers can be made out to be your fault, while others are simply a tragedy that sympathy must be showered on.

Thanks, guys!  I’ll do my best to quit cancering, but somehow I just haven’t figured it out.  No worries, I’ll keep working on it though, wouldn’t want people to think that I’m not trying to cure myself.  This disease totally would’ve been prevented if I had just known that I should quit smoking those imaginary cigarettes.

Too much sarcasm?

Probably.

But just FYI?  Breast cancer = tragedy.  Hodgkin’s = Tragedy.  Lung cancer = Why did you not take greater measures to prevent this?!

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

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

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

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

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

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

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

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

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

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

…and then cancer.

Again.

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

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

Yeah, that pretty much sums it up.

 

 

 

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Oh dear, I made a meme. This could get me into trouble.

Oh dear, I made a meme. This could get me into trouble.

Well, I have to admit I was a bit excited for today to be done with, but overall it ended up being a surprisingly good day.  I had a fun ride down to chemo with my mother, stopped for some celebratory coffee, and settled in.  Talked a bit with the doctor, who was happy to see my progress and how well I’m doing. Really, I am doing well.  Especially if you compare how I handled the last three chemo treatments, this one has been a lot easier on me.  I guess in a way that’s not saying much though!  Because of this my doctor is, in his words, “Feeling brave” and wants to consult with the doctors up at OHSU (Oregon Health Sciences University) about a possible two more rounds of chemo on a different drug than the two I’m on now.

He also stated that this was because I’m not your typical textbook case.  I laughed at that.

Jenn, my hospital buddy, has also moved back to town just in time to come sit with my mother and I for the last treatment.  I was loopy on the high dosage of Benedryl they give me for about half of it…managed a half hour nap…but it went surprisingly quick.  I did end up getting a good three or four calls (…that’s a bit sad that I can’t remember!) about the registration for the day camp I help run.  I find it ironic that the day that I don’t have access to a computer to look over the website registration site is the day that I get several calls about it messing up.  Ahh, technology, offering amazing things and increasingly frustrating stuff all at the same time.

After a little bit of lunch I took off home with Jenn and am in a sleepy state of celebration.  I also found a beautiful flower-pot from my husband’s uncle and aunt sitting on the counter with a gift card to a local burger place that’s quite good.  I think a celebratory taste is in order, of course.

Like every time I go through cancer, the future is uncertain and I don’t know if this is the last time I’ll face the disease and all the medical treatments that come with it.  But despite it’s difficulties, I don’t spend my time worrying about it.  There’s too much I have to do, people I have to spend time with, children to raise, and a husband to cherish.  Cancer may butt in, but all I can do is remember to put on my steel-toe boots and kick it right back out the door.  And maybe start doing a little more exercising again.  Couldn’t hurt.

That's right, without the scarf.  I have fuzz!  But it's likely going to fall out again before it starts to really grow.

That’s right, without the scarf. I have fuzz! But its likely going to fall out again before it starts to really grow.

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So I realize that when it comes to my blog that there’s a lot of words I use that won’t necessarily be familiar to everybody.  I thought perhaps it might be a good idea to throw a little glossary together to help people understand a bit of where I’m coming from.

Benign – A way to describe a tumor as ‘non-cancerous’.  Can be a wart or mole as well.  While these are non cancerous they tend to be obnoxious or annoying, making your doctors panic until they know for certain that they are not life threatening.

Biopsy – Open or Needle.  Inspection and sampling of tissue in the body.  In cases of cancer it typically samples tumor tissues.  Usually taken by knife (open) or needle (needle).

Blood count – A count of blood types; red, white, and platelets.  These are necessary to…y’know…live.

Cancer – There are far too many types of cancer lumped under one word to truly put an adequate description here.  However all can be summarized neatly in two words:  It sucks.

Catheter – Flexible tube inserted into your body to drain fluids.  Mildly unpleasant.  Sometimes necessary.

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

Chemo-brain –  … I forget.

Diagnosis – Finding out what’s wrong with you.  “Hey, Sue!”  “Hey, Doc!”  “Sue, I looked at your tests, you have cancer!”  “Well … that sucks.”  Yes, Sue, it most certainly does.

Immunotherapy – Usually added to chemo to help bolster your immune system.  A shot following chemo, whether given by trained staff or self-induced.  Makes your bones creak like an old ship in a hurricane.

Infusion – Not a mixed drink.  Sitting for hours in a  chair while medications are given to you intravenously.  Not just a term reserved for chemotherapy.

Intravenous (IV) – Roughly translated to “into a vein”.  Any time drugs or fluids are given through a needle into your body.  Often into a vein in your arm or hand.  Sadly coffee cannot be obtained this way.  Yet.

IV Pole – Tall and emaciated companion on a leash.  Usually beeps at inappropriate times.  Rolls while you rock.

Lobectomy – The surgical removal of a lobe of your lung (there are five total lobes, two in your left lung, three in your right lung).  Ironically this is also a term used to remove a lobe of your brain.

Lymph Node – A bean-shaped organ that has an intricate system throughout your entire body.  The body’s highway for processing infection and impurities on their way to the liver.  Also an unfortunately convenient travel system for cancerous cells.

Malignant –  Tumor, wart or mole that is cancerous.  We do not like these.  Kill on sight.

Mastectomy – Double, partial, or radical.  The ritual of removing breasts that have become unruly and attempted assassination on the host body.  Tends to cause lopsidedness or concaveness.  Sadly does not improve archery skills.

Metastasis – When cancer moves from it’s starting point to a point further inside the body.  Not usually a good thing.  Bad metastasized cancer, no cookie.

Neutropenia – When your white blood cell count is way too low, usually caused by chemo.  Also known as the “I’m going to wear a mask everywhere!” stage.

Oncology – Medical study of cancer.  The best nurses tend to spend their time in Oncology wards and are known for their deft ability to find rolling, popping, or hiding veins and make them produce.   Not to be confused for vampires.

Orpemborp – A family term for breast prosthesis.  Squishy.  Some also float.  Good for pranking people.  “Oops!  There’s a fork in my boob!”  Also expensive.  Stabbing your orpemborp is not recommended.

Prognosis – A guess or theory on your outcome after treatment.  Since I plan on whuppin’ cancer’s butt, I’d say mine is good.

Prosthesis – Replacement parts when the ones we come with reach the limit of their use or are no longer under warranty or are causing more trouble than they are worth.

Radiation – (Radio therapy in the UK).  Invisible laser beam that kills cancer cells.  Also can give you a radiant red glow.  Known to cause other cancers while curing current cancers.  Can be used over a large area or narrowed down to a small pinpoint called Cyber Knife.  Does not make you glow in the dark.

Recurrence – When cancer comes back after it’s had a proper butt-kicking.  Apparently it did not get the message that it was an uninvited guest and is simply asking for its butt to be kicked again.  Truly this disease is masochistic.

Remission – The step between being a cancer patient and being cured of cancer.  Cautiously optimistic and in ‘wait-and-see’ mode.

Staging – What your doctors do to figure out just how far and where your cancer has gone.  Usually comes with its own assigned numbers and letters to lessen confusion.

Transfusion –   “My blood is dying” or “Chemo killed my blood cells” which tends to lead to “Please may I have some of yours?”

Tumor – Malignant or benign, it’s still an abnormal growth.  We dislike these we does, precious.

Wig – Replacement hair when yours falls out.  Not to be confused with a 19th century political party.

 

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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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So I mentioned earlier in my posting my not-so-secret distaste for CT scans.  While I do love that they manage to find cancer inside of me, my intolerance (to put it lightly) for contrast dye tends to give me a rather bad taste in my mouth for them. (Literally, I can taste the contrast dye, same with saline.  It’s not really that great.)

Not long after my first CT scan I was due to go to England with my Girl Scout troop for a two and a half week scouting adventure.  We were to spend time at an international Scout & Guide camp, and then the rest of the time were due to enjoy all your typical sights and sounds of London.  I’d been saving up and fundraising with my troop for an entire year previous to this trip, so I pulled your typical sixteen-year-old and refused when my doctors asked me to forgo the trip to start chemotherapy.  It was a pretty frustrating struggle, but we came to a truce and I did all of my pre-chemo tests before we went to England, and I would start chemo immediately when we returned.

This left a bit of a sour taste in my mouth as well, knowing that this was my last trip of fun before I’d go under treatments and lose my hair.  I was sixteen and I had cancer.  I knew nobody my age, nobody in my class of over seven hundred students that had cancer.  Every teenager feels singled out…this took it to the extreme.  So, of course, it reflected in my attitude.  I tried to take on a positive outlook at first, joining with several girls in my troop at PDX as we prepared to fly.  We boarded a small aircraft from Portland to Vancouver B.C., and that seems to be where my happiness ended.    With as large of a group that we had on such a large plane, the computer gods seemed to deem it worthy that while everybody else in the flight was seated next to at least somebody else in our group on the plane, my ticket led me to a lone seat somewhere near the back of the middle section by a lady who felt it necessary to take up the remaining six empty seats next to us to lay down.

Needless to say I was pretty convinced that the world was against me.  Even though my mother did some shuffling and asking and maneuvering to get the lady to another empty row of seats and two other friends from my troop to sit next to me, it seemed to sour my attitude for the remainder of the trip.  I wanted so badly to have a good time, but it seemed no matter what my attitude took a dour perspective.

This all came to a head sometime in the middle of camp when I noticed that my left arm was becoming unbearable to move.  It was stiff and I couldn’t bend it to even a forty-five degree angle.  When I pulled back my sleeve I saw a rather large lump in the crook of my left elbow.  It was painful enough for me to bring it to my mother’s attention.  Who then brought it to the attention of the nurse.  Who then decided I needed to see an actual doctor.

I feel pretty horrible for the two lovely ladies that took the time to drive my mother and I to the nearest cobblestone village.  I don’t recall it, but apparently I had some very colorful words about being on vacation and having to visit a doctor…again.  After a short visit I found out that the lump was an infection resulting from the lovely jab of benedryl I’d taken to stop my anaphylactic shock after, well, my CT scan.  I was given antibiotics in a little glass pill bottle and sent on my merry way back to camp.  Like a good girl, I took the pills and watched the lump eventually shrink to less than a centimeter across.  Of course, in my rebellious streak, I didn’t feel pain anymore and my arm was mobile, so I tossed the remaining pills in a streak of stubborn stupidity.  The little bump caved in eventually and has served as a tiny hole in my arm that is to this day still there.

It is also what I call the bane of all phlebotomists as it seems to have pushed my veins out of sight and out of mind on my left arm.  This wouldn’t be such a bother if I hadn’t had a mastectomy on my right side–which very few nurses want to touch with any sort of IV or needle.  Also my veins are on the small side.  To put it straight, no nurse aside from one in the last fourteen years has managed to get the veins around my inner elbow (what is that spot even called anyway?), but it seems every time I try to ward a new nurse away from it they seem to take it as a challenge.  Or they don’t believe me.  Or they don’t like the other options on the arm and feel like it’s their last resort.  I’m not really sure what it is but every nurse seems to feel the need to try to find the vein and I tend to walk away bruised with multiple holes.

With the exception of oncology nurses.  For some reason they get it.  You’d think they’ve seen a lot of pathetic, small, or difficult veins in their line of work.  Crazy that.

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