Medical ID Bracelets

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

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

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

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

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

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

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

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

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

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

Turns out people have thought of that, too.

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

All the stuff to make your nurse proud.

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

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

 

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

 

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Absentminded Spoons

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.

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.

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.

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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Hospital Fashion

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.

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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The Cancer Glossary

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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How to throw a head shaving party

You’ve been through the barrage of tests, you’ve got your diagnosis, and you’ve just been informed that the treatment you’ll be facing will likely take your hair away.  Now what?  Do you wait for it to fall out or do you go in, sheers blazing, and get rid of those locks before they can succumb to medication and gravity?  When I was sixteen I let it slowly fall out, taking on a rather sickly look as each lock fell out bit by bit, gradually thinning to the point where I felt a funeral dirge over a trash can while shaving off what remained was needed.  My third time through I simply shaved it away in the privacy of my own home…but my second time?

I threw a party.

It sounds a bit odd, throwing a party to kick off the loss of your hair, but it was therapeutic in many ways for not just me, but my friends as well.  Looking back on it, however, I think there were a few things that I could’ve done to make it a more light-hearted experience.  Note, however, that no matter how you pull this off, you will likely have somebody turn on the water works.  Most likely your mother, your best friend, and also people who cry when watching Gerber commercials.  So it’s probably best to be prepared.

Timing

Figuring out just when your hair will actually fall out due to chemotherapy can be a bit tricky.  When I threw my party, my timing was just a little off and my hair actually started growing back after I shaved it.  It did eventually fall out, but I ended up with a ton of tiny little hairs about a centimeter long all over my pillow for several days afterwards.  My shaving happened literally the day after my third day of chemotherapy.  In hindsight you’re probably better off waiting for a week, possibly two after your first chemo treatment.  One is due to the timing of your hair falling out, but the other is for the sake of your own immune system.  The first chemotherapy treatment can be tricky and have a pretty powerful affect on your body, so give it a week or two to recover before you start inviting the masses to your house.

Food

It’s a party, so of course having some food for it will be ideal.  Like any party, what you make should depend on the time of day and what you’re capable of.  I was pretty worn out when we started prepping for mine, but I was lucky enough to have two far more alert friends there to help out.  There were deviled eggs involved, if I remember correctly, but due to being in a post-chemo haze the exact menu is still a bit of a blur to me.  If you want to get more particular on food due to your GI track being all sorts of messed up due to your treatments, I highly recommend this book —>  http://www.amazon.com/Eating-Well-Through-Cancer-Recommendations/dp/0961088885/ref=sr_1_1?s=books&ie=UTF8&qid=1343316631&sr=1-1&keywords=eat+well+through+cancer .

Eating Well Through Cancer is a good foundation book for those who enjoy cooking and it even breaks foods down into a cross-reference sheet in the first chapter to help you pick out which foods will help with what you’re eating.  There’s also a snack section with good dip and salsa recipes that may help here.  Each recipe has nutrition information and some come with doctor’s notes to break it down even more for those like me that stare at the number of carbs and scratch our freshly shaven heads.

After a little perusing on the web I’ve also found that I was not the only one that took this approach to my impending baldness.  You could always bring in a cake in the shape of a bald head or something silly like that.  Get creative!  If you know somebody who loves doing the party thing, let them have fun.  The less you have to do the better!

Invites

To be clear, you don’t have to go so far as making invites for everybody, but this was something I really wanted to do.  Being an art student in college I was finally learning how to work the kinks out of Photoshop and illustrator, so I decided to dabble a little there.   The front of my invites, when pulled out of the envelope, had a traced picture of myself sans-hair when I was sixteen with the wording “You’re Invited to a Head Shaving Party!”.  Inside were all the details along with, “Help Erica kick off chemotherapy by shaving her head!  Please bring a hat, scarf, or bandanna to help her keep her head warm over the coming winter months.  But really, who needs hair anyway?”  Pick your wording as it fits you, and you don’t have to ask for hats or anything of the sort, either.  Most of the time people will simply want to come to support you, and that’s the most important part.

The Party

Now, we didn’t go all out on decorations, but I’m sure there were things I could’ve done to do so.  The highlight of my party was shaving my head and then afterwards trying on all the hats and scarves that had been brought to me.  You could easily theme the party around hair, possibly playing games that involve trivia about  famous celebrities that have shaved off their locks.  Maybe have a baby-doll head shaving race between people.  After your hair is off, maybe let some of the younger party goers paint your head.  The possibilities are endless.

For me, exhaustion was creeping in, so my party wasn’t exactly an exciting bash.  There was food, chatting, and then the climax of the party was shaving my head.  My mother came out with an old New Kids on the Block sheet (one that I never liked, mind you, so I had no qualms with covering it in hair).  This was tucked around my neck and out came the shears.  At one point there was a bowl on my head as my mother tried to emulate a perfect ‘bowl’ cut.  You could do any hairstyle you normally wouldn’t, mohawk, shaving all but your sideburns, whatever you want.  Eventually the hair will come completely off, however, and you’ll be there with your newly balded head.  I wouldn’t suggest going as far as shaving with a razor and shaving cream at your party, however, unless you really trust the person shaving!  Buzzing it down to nothing will do for there, and later you can do the fine details yourself.

Each and every scarf was tried on, and if you have somebody who brought some fun wigs–try those on, too!  Have some fun, pose some crazy pictures, even have other people shave their head if they so choose.  Not everybody will be willing to lose their locks, however, so it’s probably smart to keep that in mind.

After all is said and done, there might be some teary eyes, but you’ll feel better prepared for the treatments ahead of you.  Not only that, but you’ll also have the support of your friends and family there, which is more important than just about anything in this time.  Have fun, but be sure to bring a tissue or two!

Now you’ll be free to stand in a windstorm without worrying about if your hair will tangle. Brush, begone, take on that new more aerodynamic style!

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